1

End of Life Care COVID-19

Community Guidance

Pack version 7

22 June 2020

Version Action Owner Date

1 Created the document guide and collated contents from working group document authors

Hannah Layton

08/04/20

2 Added an updated Section 3 Hannah Layton

09/04/20

3 Updated flow charts, drug charts, VoD SOP, and Carer Administration SOP. Added Care Homes and Residential Homes Sections

Hannah Layton

17/04/20

4 Updated links to pharmacy EoL medicines, VoD SOP and VoD guidance for management of MCCD. Added section 5 - SOP Post End of Life Care in the Pandemic (Community Deaths)

Hannah Layton & Kate Rush

26/04/20

5 Updated pack with re-ordering of drug charts, making section 4 separate as an information leaflet from the carer administration SOP

Hannah Layton and Kate Rush

05/05/20

6 Updated Section 3: SOP for Informal Carer Administration of Subcutaneous Injections in the community and Section 7 and 8: EoL Information for RH and NH with version 2. VoD update in Section 5 aligning with national guidance released this week.

Hannah Layton & Kate Rush

12/05/20

7 Updated guidance for accessing EoL medicines in BNSSG (page 13) updated with agreed out of hours process – for use only in the out of hours period by Severnside

Kate Rush 22/06/2020

2

Introduction: End of Life Care Community Guidance Pack

1. Purpose The purpose of this pack is to provide an evidence-informed approach to managing End of Life Care in response to Covid-19 for use in system planning, clinical assessment and management.

2. Background This guidance pack has been collated from a series of draft guidelines for end of life care in the community with COVID-19. The drafts were approved by the BNSSG system Clinical Cabinet on 1st April 2020, and collectively authored by: Dr Kate Rush, Sirona care & health Caroline Munday, St Peter’s Hospice Debbie Campbell, BNSSG CCG Dr Candida Cornish, St Peter’s Hospice Helen Wilkinson, BNSSG CCG Hannah Layton, Healthier Together (deployed to Sirona care & health) Jon Moore, Sirona care & health Lisa Rees, BNSSG CCG Dr Laura Bernstein, NBT Kate Ryan, BNSSG CCG Dr Anne Whitehouse, Brisdoc The pack provides the information materials needed for the following areas of care in BNSSG:

Section 1 : BNSSG guidance on community Palliative Care and Anticipatory Prescribing (full range of guidance for complex and non-complex patients) and guidance on managing waste medicines for community teams

Section 2 : Advice on Accessing Medicines in BNSSG (a guidance diagram)

Section 3: (updated) A Standard Operating Procedure (SOP) for

Informal Carer Administration of Subcutaneous Injections in the Community Setting - Exceptional circumstances: Covid-19

Section 4: Information leaflet for people caring at home for a relative or friend who is nearing the end of life due to any diagnosis including coronavirus

Section 5 (updated): Verification of Death/VoD – overview of guidance, in hours support form for the VoD and full Community Services SOP for registered and unregistered staff aligning with the national guidance released this week * Please note for other organisations they may not be able to offer the same level of support to VoD at the current time

Section 6: Post End of Life Care in the Pandemic (Community Deaths) SOP for community services

Section 7: (updated) End of Life Care Information for Residential Homes

If you are not able to access stock

3

Section 8: (updated) End of Life Care Information for Nursing Homes

3. The Need for the Guidance Clinical Cabinet has approved and made available a pre-Covid baseline comorbidity score for the whole BNSSG population. This will assist with the proactive identification of a group of high-risk individuals who would benefit from discussions concerning their possible treatment options if they become ill with Covid-19 (ReSPECT, etc.); and clinical decisions when a patient becomes ill, whether to send to them ED, treat them in the community, or place on an end of life pathway.

• Increased numbers of End of Life Care patients expected across BNSSG:

• We need to plan a response to this across the system to best manage this and ensure people get the best quality care

Areas included:

• Medicines Management • Core medicines required • BNSSG Anticipatory Prescribing drug chart in the Community and

Acute Trusts guidance • Equipment required • Stock and supply of EoL medicines

• Educational materials

• SOP for administration by informal carers/family members • Non-drug information to support EoL patients • Care Home support

• Workforce and ways of working

• Making best use of resources • End of Life Advice & Guidance • Changes in legislation to death verification and certification

• Ability for medical practitioners to certify death irrespective of medical attendance during the last illness

• Any suitable person will be able to verify death

4

Section 1:

BNSSG guidance on community Palliative Care

and Anticipatory Prescribing

5

Anticipatory Prescribing for Patients in last weeks or days of life due to any diagnosis including COVID –

Community setting

No

Yes

No

Yes

No Yes

No Yes

Is there a carer

available who can

administer,

buccal/SL

medications?

GP to provide

prescriptions for option

A: Non injection pack

If eGFR <30 or very frail

adjust dose of

oramorph in pack. If

allergy or intolerance-

seek advice for tailored

non injection pack.

Either send prescription

to local pharmacy or

follow process for JIC

packs (in process)

Non – complex patient (e.g. frail, elderly COVID patient):

Opioid naïve with non-complex symptoms. Adjust

prescription if eGFR <30 or if very frail

Complex patient: Complex severe symptoms present, OR patient already on opioids OR history of complex symptoms e.g. medication for more than one symptom, OR can’t tolerate standard medication OR symptoms not controlled on Pack A.

GP to provide prescriptions

for B: Injection pack and

Community Palliative Care

drug Chart for

administration by

Community Nurses.

If eGFR <30 prescribe

oxycodone instead of

morphine

Either send prescription to

local pharmacy or follow

process for JIC packs (in

process)

Appropriate registered

community clinician to follow

procedure for suitability, consent

and competence assessment. GP

to provide individualised

prescription, carer authorisation

and community drug chart

following C: usual anticipatory

prescribing guidance. For COVID

patients remember opioid can

be used for cough. Plus supply

Paracetamol 500mg

suppositories PR for fever.

Is this patient

suitable for carer

administration of

injections? Is there a serious

shortage of injectable

medication?

Secondary care will process rapid discharge of patients to home setting for terminal care with Just in case medications in line with this guidance BNSSG Palliative Care Consultants and Trust and CCG pharmacists – for BNSSG clinical cabinet V5 community 9.4.20.20

GP to prescribe

D. Tailored non injections

Seek advice for:

Patients on opioids other

than morphine, use of

fentanyl patches or use of

Abstral.

GP to provide individualised

prescription and community

palliative care drug chart

following C: usual anticipatory

prescribing guidance.

For COVID patients remember

opioid can be used for cough.

Plus supply Paracetamol

500mg suppositories PR for

fever

Is there a carer

available who

can administer,

buccal/SL

medications?

6

Supportive Guidance:

Carer Leaflet - for those given non injection medication

Standard Operating Procedure (SOP) for Carer/Family Medicine Administration – see section 3

St Peter’s hospice Clinical guidelines and resources for healthcare professionals

Community Pharmacy information:

All community pharmacies should be able to provide medication to support patients at the end of life; however, a number of pharmacies

across BNSSG are providing the NHS England Enhanced Service for the Availability of Specialist Medicines which includes holding stock of

End of Life care medications. This locally enhanced service is being continued for the 2020/21 financial year. The current list of

pharmacies and medications they hold can be found here. Please note the medication list is subject to change during the pandemic and

may need to be revised as guidance and/or availability of medicines changes.

BNSSG CCG are working with the LPC and NHSE to make sure that these pharmacies have sufficient stocks of the medicines listed in the

above guidance but it is always best if possible, to telephone the pharmacy in advance to confirm stock and opening hours during the

pandemic as subject to change.

Advice contact information:

Prescribers in the community can access specialist advice from your local hospice: St Peter’s Hospice 01179159430. Weston Hospice: 01934423900

National Guidance:

RCGP Guide: Community Palliative, End of Life and Bereavement Care in the COVID-19 pandemic

NICE Guidance: COVID-19 rapid guideline: managing symptoms (including at the end of life) in the community

Association of Palliative Care: COVID-19 and Palliative, End of Life and Bereavement Care in Secondary Care

Local Guidance:

A. Community Anticipatory Prescribing Guidance for use during the COVID-19 pandemic: Just In Case (JIC) Non-injection pack

B. Community Anticipatory Prescribing Guidance for use during the COVID-19 pandemic: Just In Case (JIC) Injection pack

C. Usual Injectable Guidance (St Peters Hospice Anticipatory Prescribing Table for complex patients): Community Palliative Care Prescribing Table

Injectable & Syringe Pump Medication for Symptom Control

D. Community Anticipatory Prescribing Guidance for complex patients during the COVID-19 pandemic: Tailored non injections

7

BNSSG Clinical Cabinet Community Anticipatory Prescribing Guidance for use during the COVID-19 Pandemic

Non-complex patients This guidance is for patients in their last weeks or days who may be dying of COVID-19 or other causes. It should be followed for non-complex patient’s i.e. opioid naïve who do not have severe symptoms and who are not already on a range of medicines for symptom control. Choose one of the following options: A: Non injection pack: If a carer can administer medications: (adjust morphine dose if eGFR <30 or if very frail) B: Injection pack: If no carer to administer medications (adjust opioid according to eGFR)

Process: Either Prescribe on FP10, send to local or designated pharmacy and authorise on Community Palliative Care Drug Chart or use process for Just in Case Packs (in development) For complex patients i.e. those on regular opioids or with complex symptoms click here:

A: NON INJECTION PACK contains 8 - 14 doses of each PRN medication More doses may be needed if complex symptoms requiring frequent PRNs – seek advice *

Always check for allergy/ intolerance to medications and seek advice if needed*

Line Drug and preparation Dose and frequency Route Comments

SYMPTOM – FEVER /MILD PAIN

1st Paracetamol 500mg suppositories Supply: 20x500mg

Insert TWO suppositories rectally up to every 4 hours when required for pain or fever. Do not use more than 4g (8 suppositories) per 24hr

PR Paracetamol may help to reduce agitation when fever is present.

SYMPTOM – PAIN/SHORTNESS OF BREATH/COUGH

1st Morphine oral solution 10mg/5ml (Oramorph) Supply: 100ml

5mg-10mg up to once every hour. Squirt 2.5ml into one cheek and allow to absorb without swallowing up to once every hour when required for pain, breathlessness or cough. This can be increased to 2.5ml into both cheeks if needed

Buccal or oral if

able

Maximum volume for each cheek is 2.5mls. For eGFR <30 or if very frail. Prescribe 2mg – 4mg (1mls – 2mls) up to once every hour.

SYMPTOM – NAUSEA AND VOMITING prescribe one antiemetic depending on availability

1st

Prochlorperazine maleate 3mg buccal tablets Supply: 8 tablets depending on product availability

3-6mg (one to two tablets) twice daily for nausea or vomiting. Max 12 mg/day (4 tablets/day). To be placed in the buccal cavity, high up along the top gum under the upper lip, until dissolved. Do not chew or swallow the tablet.

Buccal Buccastem M Buccal tablet brand (OTC or POM pack depending on product availability)

2nd Ondansetron tablets orodispersible 4mg Supply: 10x4mg tablets

Place ONE tablet on your tongue, and allow to dissolve, up to every 8 hours when required to relieve nausea

Melts on tongue

Use if supply issue with prochlorperazine buccal tablets.

SYMPTOM – AGITATION IN LAST DAYS OF LIFE

1st Lorazepam tablets 1mg NB: Genus brand Supply: 14 tablets

Place HALF to ONE tablet under your tongue and allow to dissolve, up to every 6 hours when required for anxiety or agitation. Do not swallow for 2 minutes after this.

SL Sublingual – moisten mouth if dry

SYMPTOM – RESPIRATORY TRACT SECRETIONS IN LAST DAYS OF LIFE

1st

Hyoscine hydrobromide 300 microgram Tablets Supply: 12 tablets

150-300 micrograms as required. Suck or chew HALF to ONE tablet up to every 8 hours when required for secretions. Can also be placed under the tongue

SL Kwells (brand) tablets can be used SL

8

*Advice is available 24 hours a day from your local hospice: St Peter’s Hospice 01179159430. Weston Hospice: 01934423900 SL: sublingual. PR: rectal PRN: As required.

B. INJECTION PACK supply 5 doses of each injection

More doses may be needed if complex symptoms requiring frequent PRNs – seek advice *

Always check for allergy/ intolerance to medications and seek advice if needed*

SYMPTOM – FEVER

1st

Paracetamol 500mg Suppositories Supply: 20x500mg (10 doses)

Insert TWO suppositories rectally up to every 4 hours when required for pain relief. Do not use more than 4g (8 suppositories) per 24hr

PR Paracetamol may help to reduce agitation when fever is present.

SYMPTOM – PAIN/SHORTNESS OF BREATH/COUGH

1st Morphine injection 10mg/1ml

Dose 2.5mg-5mg PRN up to hourly SC See usual guidance if on regular opioids

eGFR

<30 Oxycodone injection 10mg/1ml

Dose 1mg-2.5mg PRN up to one hourly SC See usual guidance if on regular opioids

SYMPTOM – NAUSEA AND VOMITING

1st Ondansetron 4mg/2ml injection

4mg up to 8 hourly PRN SC Alternatives are available. See guidance or seek advice if symptom not controlled.

SYMPTOM – AGITATION IN LAST DAYS OF LIFE

1st Midazolam injection 10mg/2ml

2.5mg-5mg 1 hourly PRN SC Alternatives are available. See guidance or seek advice if symptom not controlled.

SYMPTOM – RESPIRATORY TRACT SECRETIONS IN LAST DAYS OF LIFE

1st Hyoscine butylbromide 20mg/1ml

20mg up to 2 hourly PRN SC

* Advice is available 24 hours a day from your local hospice: St Peter’s Hospice 01179159430. Weston Hospice: 01934423900 SC: subcutaneous PR: rectal PRN as required For advice on syringe pumps see usual guidance

BNSSG Palliative Care Consultants, Trust and CCG pharmacists – for BNSSG clinical cabinet V5 community 9.4.20.

9

Complex patients

This guidance is for patients in their last weeks or days that may be dying of COVID-19 or other causes. It should be followed for complex patients e.g. those who are on regular opioids, have severe symptoms or may be on a range of medicines for symptom control. Choose one option: C: Usual injectable guidance: for most complex but include paracetamol suppositories for fever if COVID here D: Tailored non injections: for less complex if a carer can administer or if injections may not be possible Prescribe one PRN for each symptom. Consider patches or MR preparation (MST) if PRN drugs have been needed

D: Tailored non injections Supply 7- 14 doses when prescribing PRN drugs only.

More doses may be needed if complex symptoms requiring frequent PRN doses – seek advice*

Always check for allergy/ intolerance to medications and seek advice if needed*

Line Drug and preparation Dose and frequency Route Comments

SYMPTOM – FEVER/MILD PAIN ALWAYS INCLUDE INDICATION IN PATIENT INSTRUCTIONS

1st Paracetamol 500mg suppositories

Insert TWO suppositories rectally up to every 4 hours when required. Max 8/24h

PR Paracetamol may help to reduce agitation when fever is present.

SYMPTOM – PAIN/SHORTNESS OF BREATH/COUGH ALWAYS INCLUDE INDICATION IN PATIENT INSTRUCTIONS

1st

Morphine oral solution 10mg/5ml OR Concentrate Morphine 20mg/ml for higher doses.

Opioid naïve: 5-10mg PRN up to once every hour Patient on opioids 1/6th of total oral daily morphine dose. PRN dose up to once every hour either orally or buccally by squirting into cheek and allowing to absorb.

Buccal or oral if

able

Opioid naïve: eGFR<30/very frail: 2mg-4mg (1ml-2ml) as required once every hour. Maximum volume for each cheek is 2.5mls. Dose can be split and delivered into each cheek. If on opioids other than morphine seek advice.

Caution when using concentrate potential for error in doses

2nd

Fentanyl sublingual tablets (Abstral®)*

100 micrograms up to once every hour PRN. Can be titrated to effect

SL If patient already on background opioid of ≥60mg oral morphine. Suitable if eGFR<30

Bac

kgro

un

d Buprenorphine

patches** Starting dose 5-10microgram/hr every 7 days in opioid naïve patients

TD Check – frequency of patch change varies with preparation

Fentanyl patches* Seek advice* TD Caution needed in patients with fever

Morphine sulphate MST Continus

Convert from total daily oral morphine dose using 1:1 conversion given in 2 divided doses every 12 hours.

PO/PR Note MST® brand for PR use

SYMPTOM – NAUSEA AND VOMITING ALWAYS INCLUDE INDICATION IN PATIENT INSTRUCTIONS

1st Prochlorperazine maleate 3mg buccal tablets

3-6mg (one to two tablets) twice daily. PRN/regular. Max 12 mg/day (4 tablets/day).

Buccal Buccastem M Buccal tablet brand (OTC or POM pack depending on product availability)

2nd Ondansetron 4mg orodispersible tablets

Place ONE tablet on to tongue, and allow to dissolve, up to every 8 hours PRN/regular to relieve nausea

Melts on tongue

Use if supply issue with prochlorperazine buccal tablets.

3rd Olanzapine 5mg orodispersible tablet

5 mg at night PRN/regular. Allow to dissolve under the tongue.

SL Moisten mouth if dry.

SYMPTOM – AGITATION/ANXIETY IN LAST DAYS OF LIFE ALWAYS INCLUDE INDICAITON IN PATIENT INSTRUCTIONS

1st Lorazepam tablets 1mg HALF to ONE tablet under tongue and allow to dissolve, up to every 6 hours PRN

SL Genus brand. Moisten mouth if dry.

Seek advice if higher doses needed*

2nd Olanzapine 5mg orodispersible tablet

5 mg at night and every 4 hours PRN SL Maximum 20mg/day Supply: 14 tablets

Or Diazepam suppositories 5-10mg up to 4-6 hourly PRN PR Maximum 30mg/day

3rd Buccal midazolam 5mg up to 1 hourly PRN Buccal Buccolam® (2.5mg/0.5mL) or Epistatus® (10mg/mL) brands

SYMPTOM – RATTLEY CHEST SECRETIONS IN LAST DAYS OF LIFE ALWAYS INCLUDE INDICATION IN PATIENT INSTRUCTIONS

1st Hyoscine hydrobromide 300microgram tablets

150-300micrograms (HALF to ONE tablet) every 8 hours when required

SL Kwells® brand tablets can be used SL

Can also be sucked or chewed

BNSSG Clinical Cabinet

Community Anticipatory Prescribing Guidance for

complex patients during the COVID-19 pandemic

10

2nd Hyoscine hydrobromide patch 1mg/72hours

2 patches every 72 hours regularly TD Scopaderm® brand. Use 2 patches on hairless skin behind the ear

* Advice is available 24 hours a day from your local hospice: St Peter’s Hospice 01179159430. Weston Hospice: 01934423900 **Opioid conversion tables advice available here SL: sublingual, TD: transdermal, PR: rectal. PRN: as required.

BNSSG Palliative Care Consultants, trust and CCG pharmacists – for BNSSG clinical cabinet. V7 community 14.4.20.20

11

Managing waste medicines in the Covid-19 pandemic by community teams

For background: The SOP can be found on the intranet https://intranet.sirona-cic.org.uk/useful-shortcuts/medicines-management/. Any Questions please contact sirona.medicines.management@nhs.net Overview At all times the best way of medicines being disposed is for a family member / friend of the patient to take them back to a community pharmacy for safe destruction which should always be our first line choice. There will be a small number of situations where a patient passes away and there is a suspicion of risk of abuse / misuse of medicines by the family / other members of the public or the nurses have concerns. In this situation it is not appropriate to leave medicines behind in the patient’s home. These are usually taken back to the community pharmacy by the community nurse. These can include controlled drugs (CDs). This happens currently; however, Covid-19 poses additional challenges. In a case where the patient has suspected or confirmed Covid-19 infection, medicines (along with other items) will need to be quarantined for a period of 72 hours prior to destruction. Pharmacies are not keen to accept patient-returned medicines in cases of suspected or confirmed Covid-19 patients, however, the risk vs. benefit of individual situations should be looked at in individual cases. Scenarios and action to take when the patient is suspected or confirmed as having Covid-19:

1. Patient dies in hours or out of hours with relatives / next of kin that can take medicines back to a pharmacy after 72 hours - the time deemed acceptable to be non-Covid contaminated [this should be the majority of cases]

2. Patient dies in hours or out of hours with no-one identified as being able to take medicines to a pharmacy after 72 hours. No suspicion of abuse of medicines from anyone– community team double bag (recommended advice) the drugs labelled ‘old medicines to return to pharmacy after x date’. This medicine then becomes part of the patient’s estate which will be sorted at some point and the medicines returned to the pharmacy at this point by whoever is clearing the house after death.

3. Patient dies in hours with no-one identified as being able to take medicines to a pharmacy after the set time. Suspicion of abuse of medicines from someone or if the nurse has any other concerns or feels there are safety risks.

In this situation the medicines are double-bagged and returned to the community pharmacy by the community team taking all infection control measures into consideration. Pharmacies will then need to quarantine the medicine bags in the pharmacy for 72 hours. Community teams will need to state to the pharmacist that this is the safest option due to risk of abuse of medicines if left in the home and the fact that they cannot keep the drugs in their own possession for periods of time.

4. Patient dies out of hours with no-one identified as being able to take medicines to a pharmacy after the set time. Suspicion of abuse of medicines from someone or if the nurse has any other concerns or feels there are safety risks.

The community team will need to destroy the Controlled Drugs (Schedule 2, 3 and 4(part 1)) in a CD destruction kit (see SOP on intranet) and then double bag this with the rest of the medicines to be stored at a locality base in quarantine (i.e. clearly labelled and in a place that is not accessible by everyone) and returned to a community pharmacy the next day (at all times using appropriate PPE). In this scenario, it is expected that the risk of misuse is already known and therefore to plan for 2 members of staff (one can be an unregistered staff member) to visit at this time and to collect a CD destruction kit from the store (Cossham hospital extended care team base for South Glos, Amelia Nutt team base for Bristol, Elton Rehab Unit (contact the night staff) for North Somerset).

Community teams are advised that when taking medicines to pharmacies that the reason for taking medicines to them is clearly communicated with the benefit vs. risk discussion. There may be objections to taking back medicines but this needs to be clearly explained that this has been discussed as a system-wide approach and that they can contact the Local Pharmaceutical Committee for support on this as they have been involved in discussions. The pharmacies have also had a letter from the Police regarding storage of Controlled Drugs and, whilst not specific to waste medicines, should be referred to in these circumstances.

12

Section 2:

Accessing Stocks of Medicines in BNSSG (Guidance Diagram)

13

Accessing End of Life Medicines in the Community in BNSSG

Informal Carer Administration of subcutaneous injections in the community setting. Exceptional Circumstances - COVID 19. V2 Review July 2020

14

Section 3:

A Standard Operating Procedure (SOP) for

Informal Carer Administration of Subcutaneous Injections in

the Community Setting Exceptional circumstances: Covid-19

FP10*

via

EPS

Prescriber completes EMIS EOL drug

chart electronically. Information should

include prescriber name, but does not

require a wet signature (as the signed

FP10 is the legal direction)

GP

IN HOURS PROCESS—FP10 route

If you are not able to access stocks o

GP Pape

r

FP10

Drug chart process as

above

Informal Carer Administration of subcutaneous injections in the community setting. Exceptional Circumstances - COVID 19. V2 Review July 2020

15

BNSSG Clinical Cabinet

Informal Carer Administration of Subcutaneous Injections in the Community Setting Exceptional Circumstances - COVID 19

1. POLICY/PROCEDURE STATEMENT:

Healthcare professionals that work in the community provide care and support to adults dying in

their own homes with a life limiting illness. Community healthcare professionals (HCP) such as GPs,

District nurses and Hospice staff all aim for the optimum management of end of life (EOL)

symptoms, with the comfort of the patient dying being of paramount importance for all.

In the exceptional circumstances that COVID 19 has brought, this policy and procedure relates to

the management of symptoms at the end of life in the community setting by informal carers

administering subcutaneous (SC) injections. We recognise that an increased number of people will

be dying at home with limited access to healthcare professionals being able to visit. The clear need

for effective 24 hour symptom control despite the limitations of HCP visiting is of concern for

patients, their families/carers and healthcare professionals.

The aim of this policy and procedure is to address the need for effective 24 hour symptom control

and provide a safe framework for healthcare professionals to work within when a patient’s

symptoms may not be controlled by the usual methods – that is oral medication or a 24 hour

subcutaneous syringe pump. This document provides guidance and frameworks to educate a

carer(s) to administer medication via a subcutaneous injection line or subcutaneous injection.

Despite these exceptional circumstances this role has been promoted by others in palliative care

(St Joseph’s Hospice – London 2019, Lincolnshire Community Health Services 2018, Bradford &

Airedale 2006, Brisbane South Palliative Care Collaborative –Australia 2018). In addition it is

common practice that carers administer other subcutaneous (S/C) medication such as

Clexane/Insulin.

2. RELATED POLICIES:

Anticipatory Prescribing of ‘Just in Case’ medication for symptom control in the last days of

life in the adult community palliative care patients. BNSSG.

https://www.stpetershospice.org.uk/userfiles/files/FINAL_AUG15_Just+In+Case+Policy+(5)

_compressed.pdf

Community Palliative Care Prescribing Table - Bristol Palliative Care Collaborative.

This policy available at:

https://www.stpetershospice.org.uk/userfiles/files/Palliative%20Prescribing%20table.pdf

Local Safeguarding policy

Local Mental Capacity Act policy

Local Incident Reporting policy

3. SCOPE OF POLICY:

3.1 Informal Carer (s) relates to the person providing care for the patient as part of a personal

and not professional relationship. This usually is a family member or close friend (1). An informal

carer is not employed as a paid carer for the patient. If the informal carer (e.g. family member of

the patient) is a HCP holding a current registration the whole process of this policy should be

followed. There should be no more than 2 informal carers that are trained using this policy per

patient. This policy is not to be used for training any employed non-registered carer, for

example a health care assistant working in a community or care home setting.

3.2 Patient has been assessed by a registered community clinician with appropriate competencies

and experience as suitable for anticipatory prescribing i.e. the patient is actively deteriorating

and believed to be in the last weeks or days of life. This will have been communicated to the

patient and their relative/carer.

Informal Carer Administration of subcutaneous injections in the community setting. Exceptional Circumstances - COVID 19. V2 Review July 2020

16

3.3 This document relates only to informal carers giving medication via subcutaneous injection or

via a subcutaneous line. A number of medications can be given by the sublingual route or buccal

route. A guideline relating to this is in development. If the patient has a subcutaneous syringe

pump it may still be appropriate for carers to administer as required injections. In these

circumstances a separate Saf-T intima line will be inserted for the sole use of PRN medication.

Therefore patients with a syringe pump will have two SC lines insitu 1 for the Syringe pump and a

second for PRN medication It is NEVER appropriate for a carer to change a syringe pump.

3.4 This document provides guidance to relevant registered community clinicians with

appropriate competencies and experience working within the BNSSG area that are required to

care for adult patients 18 years and above with a terminal illness. The clinician instigating

procedure or training and assessing competence must be more than 12 months post registration.

3.5. The registered community clinician with appropriate competencies and experience

who instigates the procedure by discussing, assessing suitability and obtaining consent will be

termed the lead clinician for the purposes of this policy. They may continue to complete the whole

process, but if they do not have the necessary skills, experience or equipment they may handover

to another registered community clinician with appropriate competencies and experience

to complete the teaching, competence assessment and insertion of the line.

3.6 The need to implement this procedure should be led by the needs of the patient/carer

and should not be imposed on the patient/carer by health care professionals. It is not anticipated

that this procedure will be relevant for all informal carers.

Definitions:

Injections/Injectable medication – This relates to medication for symptom control in the last

days of life. Such medication is most commonly given as subcutaneous (SC) medication.

Controlled drug (CD) – Some prescription medications are controlled under the Misuse of Drugs

legislation (and subsequent amendments). These medications are called controlled medication or

controlled drugs (2). For Just in Case (JIC) injectable controlled drugs are Midazolam and Opioids.

Competence – “The state of having the knowledge, judgement, skills, energy, experience and

motivation required to respond adequately to the demands of one’s [professional] responsibilities”

(3).

4. Risk Management:

4.1 Participation of an informal carer(s) in administration of SC injections must be entirely

voluntary. The registered community clinician assessing suitability must ascertain and ensure that

the carer has not been subjected to undue pressure from either the patient, another family

member or a healthcare professional to take on this role. The registered community clinician must

make it clear to the carer from the outset that the carer can stop administering SC injections at any

time if they don’t feel comfortable to continue. A registered community clinician can stop the carer

administering SC injections if it has been assessed as not to be safe.

4.2 The registered community clinician instigating this procedure must not increase the burden of

care by placing informal carers in distressing and emotive situations whereby a patient may ask

their carer to end their suffering by using a subcutaneous injection meant to manage symptoms. In

a particular case where this is deemed to be a risk carers should not be approved for

administration.

4.3 An assessment of suitability must be completed by the registered community clinician for each

carer being considered prior to any administration of subcutaneous medication (see appendix 1)

which includes criteria for suitability and relative contraindications to suitability. If the instigating

clinician is not the GP the clinician should obtain agreement from a doctor, ideally a GP who knows

the patient, to complete the process. The clinician will leave all documentation in the house and

record clearly on EMIS that it has been completed.

4.4 If an assessment for suitability shows that carer administration is not appropriate then this

form should remain in the home, and this should be documented in EMIS. A warning should be

added to EMIS that carer administration is not suitable/appropriate. Then within an EMIS

Informal Carer Administration of subcutaneous injections in the community setting. Exceptional Circumstances - COVID 19. V2 Review July 2020

17

consultation please add details, this must include the carer’s name, who has been assessed and a

reason(s) given as to why this was determined.

4.5 The consent form (see appendix 2) must be completed by the carer being assessed and the

lead clinician assessing the competency of the care and providing the training. This document will

stay in the house but the process should be documented on EMIS

4.6 The carer must successfully complete a Competence Assessment (appendix 3) prior to

administering subcutaneous injections. This will be completed with the carer by a relevant

registered community clinician with appropriate competencies and experience working within the

BNSSG area. The clinician will document on EMIS that this has been completed.

4.7 A prescriber must complete the Carers Authorisation Chart – see appendix 4 and 5. This could

be a doctor or non-medical prescriber (NMP). This must include the minimal interval between doses

in hours. This will be used alongside the usual Community Palliative Care Drug chart and therefore

must be in line with the drug chart, however may not contain the same ranges for dose of drugs.

As usual the prescriber should indicate on the Community Palliative Care Drug Chart the maximum

dose in 24 hours.

4.8 Carers will be provided with a “Steps involved to administering a subcutaneous injection” form

(see appendix 6), which includes information about sharps disposal and the steps to take in case of

needle stick injuries. Carers will also be given an Information Leaflet (see appendix 7) and the ‘Just

in case’ leaflet (Leaflet is found via:

https://www.stpetershospice.org.uk/userfiles/files/FINAL_AUG15_Just+In+Case+Policy+(5)_compr

essed.pdf )

4.9 Carers will be provided with the appropriate equipment for administration of subcutaneous

injections and appropriate disposal of sharps by the community service (usually the District Nurse

team). This will include being taught the correct technique for sharps disposal.

4.10 Carers will be permitted to take on the role of administration of subcutaneous injections with

the consent of a patient who has capacity. Where there is doubt about capacity a capacity

assessment should be carried out in accordance with the Mental Capacity Act (MCA) by a clinician

with the appropriate competencies. If the patient does NOT have capacity, and there is no Lasting

Power of Attorney (LPA) or relevant legal representative there must be a best interest discussion to

decide whether carer administration is in the patient’s best interests. The clinician involved in

leading the best interest discussion should sign the consent form. If the GP is not involved in this

discussion then the GP must be in agreement with the best interest decision. This must be recorded

fully in the patients EMIS notes.

4.11 Carers must have mental capacity to undertake this delegated task. Refer to the MCA as

needed.

4.12 Carers must not be given an opportunity to participate if there are any safeguarding concerns

relating to that carer. Please refer to your local safeguarding policy.

4.13 If there is a history or concern about injectable drug misuse relating to the patient or carer,

the carer should be deemed not suitable to administer injectable medication. The risk of drug

misuse or diversion relating to other members of the family or visitors to the house should be

considered.

4.14 The carer’s involvement in administering subcutaneous injections, and experience must be

taken into account when assessing bereavement risk and providing bereavement support.

Bereavement support must be considered and provided for informal carers who might be involved

in administering the ‘last injection’ prior to death for symptom control.

4.15 In order to reduce risk, easy dosing (e.g. using full vials/ easy drawing up of part vials)

should be considered and this may guide drug choices/ vial sizes where possible.

4.16 As outlined in the procedure the informal carer should contact the District nurses via Sirona

Single Point of Access (SPA, first line), or relevant local hospice (second line) in the following

circumstances:

Informal Carer Administration of subcutaneous injections in the community setting. Exceptional Circumstances - COVID 19. V2 Review July 2020

18

Any time if they have given 3 injections in total within a 24hour period to discuss whether it

is appropriate to give additional injections, or whether a review is needed

If the symptom has not improved an hour (or sooner if they are worried) after giving the

drug,

They have any concerns, questions or queries at all.

If they prefer to discuss with a HCP prior to administering the injection.

They no longer wish to give the subcutaneous injections

The carer has administered the prescribed limit of the number of administrations which has

been prescribed in 24 hours (this might be fewer than 3)

4.17 Should a drug error occur, and the carer’s competence is in question or carer’s intentions in

doubt then a further assessment by a relevant registered community clinician should take place to

decide whether it is appropriate for the carer to continue to administer SC medication. This must be

documented in EMIS.

4.18 All adverse incidents and significant untoward events are to be reported according to the local

incident reporting policy, and communicated to all relevant staff involved in the patients care as

soon as is practical.

4.19 Best practice is to avoid remote prescribing over the phone. However if a delay in changing a

prescription is likely to lead to significant harm or suffering of the patient then the prescriber should

assess the risk of going out of best practice. This must be clearly documented. If a prescription is

changed remotely over the phone then the Community Palliative Care drug chart and the Carers

Authorisation chart should be changed at the earliest opportunity.

4.20 It is not recommended that carers draw up injections in advance of them being needed as it

may not be safe to store them for any length of time.

4.21 Reconstitution has not been covered in this policy as Diamorphine is not a first line

medication.

4.22 Each time there is a face to face review of the patient by a relevant registered community

clinician the following must be reviewed:

Accuracy of Community Palliative Care Drug Chart

Review how the carer is coping and whether there have been any events

Drug accountability – do they stocks tally between the stock and drug chart

Review of any admissions for the patient (e.g. hospital)

The review should be recorded in the patient’s clinical records and any concerns escalated

appropriately.

5. Procedure (for summary of steps see Appendix 6a or 6b):

5.1 Identify the appropriate lead clinician for each patient for this process. This may be any

registered community clinician with appropriate competencies and experience. The lead clinician

will follow procedure points 5.2-5.9 (suitability and consent). They may also proceed to

complete procedure points 5.10-5.21 (teaching, competence assessment and insertion of the line)

if they have the necessary, equipment, experience and competencies. Alternatively they may hand

this over to another appropriate clinician.

5.2 Discuss with a GP, from the patient’s practice (if it is in hours), and a district nurse their

opinion of allowing a carer to administer subcutaneous injectable medication. Only proceed with the

rest of the procedure if the GP or a registered medical practitioner is in agreement.

5.3 Assess the patient and carers suitability: Complete check list in appendix 1. This must be

completed by a Registered Community Clinician with appropriate competencies and experience (i.e.

not within first 12 months of registration).

5.4 Approach the patient and carer - Where possible, the lead clinician will discuss with the

patient the possibility of their carer(s) administering subcutaneous injections. This discussion

ideally would be without the carer being present. The patient may wish to specify which carers they

would be willing to allow to take on this role.

5.5 Ask the carer(s) nominated by the patient if they are willing to take on administration of

subcutaneous injections. This would ideally be without the patient being present. Ensure that the

Informal Carer Administration of subcutaneous injections in the community setting. Exceptional Circumstances - COVID 19. V2 Review July 2020

19

carer understands that taking on this role is entirely voluntary and that they can choose to stop at

any time if they feel uncomfortable. (Note: Professional staff must continue to assess on an on-

going basis the impact the administration role is having on the carer and patient).

5.6 Provide copies of the information leaflet (see appendix 7) to the patient and carer and allow

sufficient time for them to read and consider the information, and ask any questions.

5.7 Ensure you discuss:

That the carer will need to be assessed for competence

That advice and support tailored to the individual patient and carer will be arranged

That it can be difficult for carers to undertake this as it places a burden on them - they do

not have to do it; they can change their minds

That near the end of life injections may need to be given; these will not cause death but

may be required near the time of death

That the locality SPA/District Nurse Team (first line) or relevant hospice (second line) can be

contacted 24/7 for advice

5.8 Document consent. If the patient has capacity, they must give consent for their carer(s) to

administer subcutaneous injections. Where a patient does not have capacity see 4.12.

5.9 The carer, patient and lead clinician must complete and sign the relevant sections of the

consent form contained in appendix 2. Where there are multiple carers administering subcutaneous

injections to a patient, a separate consent form must be completed for each individual carer.

5.10 If the patient and carer are happy then proceed onto assessing competence.

5.11 The competence assessment must ONLY be undertaken by a Registered Community Clinician

with appropriate competencies and experience who themselves is aware of the correct use,

limitations and hazards of subcutaneous injections as part of their scope of practice. The lead

clinician or other appropriate Registered Community Clinician should complete procedure

points 5.12-5.20.

5.12 Teach the carer about common symptoms that may occur in the last days of life and

how to assess if a medication is needed for a particular symptom.

5.13 Teach the carer and then assess their competence in administering SC injections.

Use the checklist provided in appendix 3 when assessing the carer’s competence. It is recognised

that full completion of this policy might require more than 1 visit. The focus should remain on

attaining competency and not compressing competency acquisition in a short a time as possible.

Where more than 1 carer will be administering injectable medication a separate checklist must be

completed for each carer.

5.14 The appropriate registered community clinician will teach the carer the correct procedure by

following the steps in the competency assessment (appendix 3). Note the SAF-T intima line is the

preferred method for carer administration. If the lines are not available they may be taught to give

a subcutaneous injection using a needle.

5.15 The appropriate registered community clinician will:

Insert the SAF-T intima line and secure with appropriate dressing. Add the no needle

bung (Bionector).

Arrange for change of the line every 7 days.

Ensure the Carer’s Authorisation Chart (Appendix 4 or 5) and Community

Palliative Care Chart are completed by a prescriber and correlate with each

other. If the prescriber is not the GP, then inform the GP and check they are happy

with the plan.

*Note if the patient is unlikely to need SC injections in the next 24 hours do not insert the SAF-T

intima line. It is still reasonable to complete the other parts of the procedure if injections are likely

to be needed in the near future.

5.16 Provide support and guidance for the carer. Provide the carer(s) with the ‘Steps

involved in administering a subcutaneous injection (see appendix 6a or 6b) and the ‘Carers

Informal Carer Administration of subcutaneous injections in the community setting. Exceptional Circumstances - COVID 19. V2 Review July 2020

20

Authorisation Chart’ (see appendix 4 and 5). This contains information about when and how often

each injectable medication can be given, the indication for each medication, and when and who to

contact for guidance and support. Explain also to the carer the possible common side effects of the

medications.

5.17 Advise the carer that all injectable medications they administer must be documented on the

Community Palliative Care Drug Chart, ensuring they complete the details of the section on the

front ‘Details of Person Administering Drugs’ indicating they are the carer

Please note this is the same Authorisation Chart already in use in BNSSG and being completed by

healthcare professionals administering subcutaneous medications.

5.18 Advise the carer that the Community Palliative Care Drug Chart must be kept with the patient

and must be accessible to any healthcare professional who visit the patient.

5.19 Show the carer how to complete the stock chart and remind them they can contact their GP if

their stocks are running low

5.20 Complete a warning and make visible to all organisations on the patient’s EMIS record that

says “Name of carer (relationship to patient) is authorised to give injectable medications to this

patient”.

5.21 Once the suitability, competence and consent is completed the carer is allowed to administer

injections. The following points apply to the administration phase.

5.22 The informal carer should contact Sirona Single Point of Access (SPA) or District Nurse (DN)

team (first line) or relevant local hospice (second line) in the following circumstances:

Any time if they have given 3 injections in total within a 24 hour period to discuss whether it

is appropriate to give additional injections, or whether a review is needed

The carer has administered the prescribed limit of the number of administrations which has

been prescribed in 24 hours (this might be fewer than 3)

If the symptom has not improved an hour (or sooner if they are worried) after giving the

drug.

They have any concerns, questions or queries at all related to injectable medication

They no longer wish to give the subcutaneous injections.

5.23 Carers who are administering subcutaneous injections must receive face to face visit from a

District Nurse/appropriate registered clinician from community provider at least once a week to

replace the line, check stock and provide supervision and support. Alternatively, in discussion with

the community provider one of the following may be able to fulfil this role:

Hospice CNS or doctor

General Practitioner

Hospice at home Band 6 or 7 Staff nurse

5.24 If at any time a carer wants to stop giving subcutaneous injections, reassure them this is fine.

Inform district nursing team and GP, remove alert from EMIS notes, and remove “carer’s direction

to administer as required subcutaneous injections” form from patient’s home at next visit. During

out of hours inform carer to please phone the SPA. Please also document on EMIS within

consultations that SC administration by carer has been stopped.

5.25 If the carer’s competency is in question or carer’s intentions are in doubt then the carer must

not continue to administer subcutaneous injections. If any of these situations occur, sensitively

inform patient and carer of this; then inform district nursing team, Hospice and GP, remove alert

from EMIS notes, and remove “carer’s direction to administer as required subcutaneous injections”

form from patient’s home at next visit. This discussion should be documented on EMIS.

5.26 Should a drug error occur a further assessment by a relevant registered community clinician

should take place to decide whether it is appropriate for the carer to continue to administer SC

medication.

5.27 Relevant contact numbers must be given to the carer, including out of hours contact.

Informal Carer Administration of subcutaneous injections in the community setting. Exceptional Circumstances - COVID 19. V2 Review July 2020

21

6 RESPONSIBILITY/ACCOUNTABILITY:

6.1 It is the responsibility of the relevant registered community clinicians with appropriate

competencies and experience to be familiar with this policy and procedure.

6.2 Registered nurses administrating any medicines, assisting with administration or overseeing

any self-administration of medicines must exercise professional judgement, maintain knowledge

and practice their professional accountability as per NMC The Code (2018).

6.3 Registered nurses are responsible for recognising any limitations in their knowledge and

competence and declining any duties they do not feel able to perform in a skilled and safe manner

(NMC The Code 2018).

6.4 The lead clinician will identify and assess the suitability of the carer.

6.5 It is the responsibility of the lead clinician to discuss and explain the procedure (Section 5 of

this policy), and its implications with the patient (where appropriate), and the carer (s) to ascertain

their willingness and agreement to undertake this task. The consent form in appendix 2 must be

completed.

6.6 It is the responsibility of the prescriber to clearly prescribe the PRN medication, implications for

use, minimal intervals and maximum number of dosages on both the Community Palliative Care

Drug Chart and the Carers Authorisation chart – Appendix 4 and 5.

For appropriate prescribing see: Anticipatory Prescribing of ‘Just in Case’ medication for symptom

control in the last days of life in adult community palliative care patients – Standard Operating

Procedure and Clinical Guidelines for BNSSG

https://www.stpetershospice.org.uk/userfiles/files/FINAL_AUG15_Just+In+Case+Policy+(5)_compr

essed.pdf

6.7 It is the responsibility of the lead clinician to explain to the carer(s) the indications and possible

common side effects of the prescribed medication.

6.8 The clinicians must provide an opportunity for the relative/carer(s) to express any fears,

concerns and anxieties that they may have.

6.9 It is the responsibility of the lead clinician or appropriate registered community clinician to

insert the subcutaneous device Saf-T intima needle, secure with a transparent film dressing and

flush the line with 0.5ml water for injection. The clinician will also remove the Saf-T intima bung

and replace it with a Bionector.

6.10 It is the responsibility of the lead clinician or appropriate registered community clinician to

educate the relative/carer(s) to observe for signs of swelling, inflammation or leakage at the

subcutaneous site and report to the community nursing team.

6.11 It is the responsibility of the lead clinician or appropriate registered community clinician to

teach the carer(s) to consult the Carer Authorisation Chart (appendix 4 and 5) and ascertain the

following, using this as a checklist:

Drug and dose

Interval of time between a further dose of the medication

Route of administration

6.12 It is the responsibility of the lead clinician or appropriate registered community clinician to

show the carer how to record drug administration on the Community Palliative Care Drug Chart.

6.13 It is the responsibility of the lead clinician or appropriate registered community clinician to

teach a carer how to dispose of any unused/ excess ampoules.

6.14 It is the responsibility of the lead clinician or appropriate registered community clinician to

ensure that the carer(s) understands the procedure expected of them and that the instruction

leaflet is provided which includes contact numbers (appendix 6a or 6b).

Informal Carer Administration of subcutaneous injections in the community setting. Exceptional Circumstances - COVID 19. V2 Review July 2020

22

6.15 The lead clinician must explain all relevant contact numbers to the carer(s) and encourage the

prompt reporting of any concerns or to ask questions. Record on the Information leaflet for carer’s

(appendix 7).

6.16 It is the responsibility of the lead clinician to inform the GP as continuing prescriber.

6.17 The lead clinician will ensure that it is clearly marked on the patient’s EMIS records by use of

a warning that this procedure is in operation. The lead clinician will also document that the:

Criteria for suitability checklist has been completed

Competence Assessment is successfully completed

Consent form signed

6.18 When a relevant registered community clinician is present in the home they must check the

balance of all medication ampules is correct, update the stock list for controlled drugs, and assess

the need for further supplies. Any discrepancies must be reported.

6.19 Any community pharmacy should accept any unused medicines for destruction after death.

7 COMPLIANCE WITH STATUTORY REQUIREMENTS/REFERENCES:

1. https://www.gov.uk/government/publications/care-act-2014-part-1-factsheets/care-act-

factsheets

2. Misuse of Drugs Act 1971; Misuse of Drugs Regulations 2001

3. RCN (2020). Medicines Management. Available from: https://www.rcn.org.uk/-/media/royal-

college-of-nursing/documents/publications/2020/january/009-018.pdf?la=en

4. Lincolnshire Community Health Services: NHS Trust (2018). The Lincolnshire Policy for Informal

Carer’s Administration of As Required Subcutaneous Injections in Community Palliative Care.

Version 10. Available from:

https://www.lincolnshirecommunityhealthservices.nhs.uk/application/files/7315/2121/0510/P_CS

_20_Carers_Giving_Subcutaneous_Injections.pdf

5. St Joseph’s Hospice (Oct 2019). Carer Administration of sub-cutaneous injection procedure. St

Joseph’s Hospice, London. Version 2.

6. Brisbane South Palliative Care Collaborative. Guideline for Handling of Medication in Community

based Palliative Care Services in Queensland [online]. 2015. Available:

https://www.health.qld.gov.au/__data/assets/pdf_file/0028/141778/medguidepall.pdf

7. NMC (2018) The Code – Professional standards of practice and behaviour for Nurses and

Midwives. Available: https://www.nmc.org.uk/standards/code/

8. Nursing & Midwifery Council. Delegation and Accountability: Supplementary information to the

NMC code. Available from:

https://www.nmc.org.uk/globalassets/sitedocuments/nmc-publications/delegation-and-

accountability-supplementary-information-to-the-nmc-code.pdf

9. Bradford and Airedale Teaching Primary Care Trust. (2006) Subcutaneous Drug Administration by

Carers (Adult Palliative Care). Available:

https://www.palliativedrugs.com/download/SubcutaneousDrugAdministrationbyCarers.pdf

10.General Medical Council (2013): Good Practice in Prescribing and Managing medicines and devices. Available: https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-

doctors/prescribing-and-managing-medicines-and-devices

11.Mental Capacity Act. (2005). Available: https://www.legislation.gov.uk/ukpga/2005/9/contents

12.Royal Pharmaceutical Society. (2019). Professional Guidance on the Administration of Medicines in

Healthcare Settings. Available:

https://www.rpharms.com/Portals/0/RPS%20document%20library/Open%20access/Professional

%20standards/SSHM%20and%20Admin/Admin%20of%20Meds%20prof%20guidance.pdf?ver=20

19-01-23-145026-567

13.Royal Pharmaceutical Society. (December 2018). Professional Guidance on the safe and secure

handling of medicines. Available: https://www.rpharms.com/recognition/setting-professional-

standards/safe-and-secure-handling-of-medicines/professional-guidance-on-the-safe-and-secure-

handling-of-medicines

14.Helix Centre (March 2020) Carers administration of as-needed subcutaneous medicines. Adapted

from the CARiAD study. Available: https://subcut.helixcentre.com/

Informal Carer Administration of subcutaneous injections in the community setting. Exceptional Circumstances - COVID 19. V2 Review July 2020

23

8 POLICY MONITORING AND REVIEW:

TITLE:

POLICY NAME: Informal Carer Administration of Subcutaneous Injections in

the Community Setting Exceptional Circumstances - COVID 19

Version: 2

Approved By: BNSSG Clinical Cabinet

Signature:

Date of Approval: April 2020

Policy Owner: Dr Kate Rush on behalf of Clinical Cabinet, BNSSG

Revision due by: July 2020

Policy Authors: Caroline Mundy/Dr Candida Cornish/Katie Versaci/Claire

Daniels. St Peter's Hospice. Bristol.

Committee: BNSSG Clinical Cabinet

REVISION HISTORY:

Description Date Version Author(s)

Title word ‘Informal’ added Section 3 – 3.1 additional sentences

added to enhance clarity that this SOP is not for HCA’s or any paid carer

16/4/20 2 Caroline Mundy

Informal Carer Administration of subcutaneous injections in the community setting. Exceptional Circumstances - COVID 19. V2 Review July 2020

24

Appendix 1 – Criteria for Suitability Checklist.

Patient’s Name: NHS Number:

DOB: Carers Name:

Criteria suggesting suitability Yes/No

1 The carer(s) are over the age of 18 years.

2 The patient may require as needed medication subcutaneously

3 Patient has been assessed by a registered healthcare professional as actively deteriorating and in the last few weeks or days of life. This will

have been communicated to the patient and their relative/carer

4 The carer must understand the purpose of As needed medication

5 The patient would like the carer to undertake the procedure

6 If patient lacks capacity a best interest decision has been made that

a carer can administer medication subcutaneously

7 The carer’s willingness and mental capacity to undertake the procedure

has been ascertained

8 The Carer is physically capable of the task

Criteria that may prevent suitability NB these are relative, not absolute, contra-indications

9 There is concern about misuse of injectable medications in the home, e.g. contact with known illegal drug users, security issues within the

home etc.

10 There is concern that the carer will not be able to cope either physically

or emotionally with undertaking medication administration subcutaneously. This must include consideration of the carers own

health, dexterity and maths literacy levels

11 There is concern that the carer has cognitive problems (i.e. who are

confused, disorientated or forgetful, or unable to understand the importance of medications and information relating to them), or is unable or unwilling to engage with and access available healthcare

support systems.

12 There are relationship issues between the patient and carer which

contraindicates carer-administration of medication (e.g. where either the patient or carer can assume this practice intentionally hastens

death).

13 The patient is on a complicated drug regime

14 Where there is no suitable place for medications to be stored

15 There are safeguarding concerns regarding the patient &/ or carer(s).

16 The patient is known to be positive for HIV / viral Hepatitis.

Additional info: Carer is a registered nurse or doctor: Yes/No

Healthcare professional completing assessment Signature:………………………………………………………….. Print Name………………………………………………………

Job Title………………………………………………................ Telephone Number……………………………………………….

Employer: …………………………………………………………..Date completed:………………………………………………

Informal Carer Administration of subcutaneous injections in the community setting. Exceptional Circumstances - COVID 19. V2 Review July 2020

25

Details of GP who has agreed that carer administration procedure to be considered (including best interest decision):

Name ……………………………………………………………………….. Base……………………………………………………

Details of Community Nurse whom this discussion has occurred with:

Name ……………………………………………………………………….. Base……………………………………………………

If Questions 1-8 are answered “Yes”, the patient may be considered potentially suitable to

have carer administer medication subcutaneously. If you have answered “Yes” to any of points 9 to 14, a discussion should take place with the

GP and other professionals involved in the patients care e.g. the District Nurse team. After considering the issues, a decision whether or not to proceed further must be made. This

discussion and decision must be clearly documented within the patient’s EMIS records.

(Adapted from: St Joseph’s Hospice: Carer administration of subcutaneous injections procedure.V2

2019. Carer administration of as-needed subcutaneous medicines. Helix Centre. March 2020.)

Informal Carer Administration of subcutaneous injections in the community setting. Exceptional Circumstances - COVID 19. V2 Review July 2020

26

Appendix 2 – Consent Form

Patient’s Name:…………………………………………………………………………………………………………….

NHS Number:…………………………………………………………………………………………………………………

DOB………………………………………………………………………………………………………………………………….

Section 1 (To be completed by the carer):

I, …………………………………………………….. (carer name) have been fully informed about my role in administering subcutaneous injections and I am happy to participate in this role as a carer to

(patient’s name)….………………………….………………………………………………………………………………………….. Carer to please read the following statements and initial box as appropriate:

Initials

I have been given an information leaflet and given sufficient time to read and consider its contents before proceeding further

I have been taught the procedure and associated documentation, and I have undergone an assessment of my competence to give subcutaneous injections

I am happy to proceed with administering subcutaneous injections

I know who to call for support and have their contact numbers.

I have been provided with a “Carer’s Authorisation Chart” to administer as

required subcutaneous injections” form and need to comply with its contents.

I have been taught how to complete the Community Palliative Care Drug

Chart

I am aware that I can relinquish this role at any time.

I am aware that I am only to give up to 3 injections in a 24 hour period without seeking further advice

I will phone the District Nurses via Sirona Single Point of Access (SPA as a first line) or relevant local hospice (second line) in the following circumstances:

Any time if I have given 3 injections in total within a 24hour period to discuss whether it is appropriate to give additional injections, or

whether a review is needed If the symptom has not improved an hour (or sooner if I am

worried) after giving the drug,

I have any concerns, questions or queries at all related to injectable medication

I no longer wish to give the subcutaneous injections

Carer’s signature: ……………………………………………………………………………………………………………………….. Date /Time: ………………………………………………………………………………………………………………………………….

Healthcare professional witnessing carer sign this form: Name (PRINT):………………………………………………..Signature:…………………………………………………………..

Date:…………………………………….

Section 2 (To be completed by the patient – if/where feasible):

I…………………………………………………………….(patient name) am happy for my

carer…………………………………………..(carer name) to take on the role of giving me subcutaneous

medication.

Patient’s signature: ………………………………………………………………………..Date: ………………………………….

Informal Carer Administration of subcutaneous injections in the community setting. Exceptional Circumstances - COVID 19. V2 Review July 2020

27

Section 3 (To be completed by the healthcare professional where patient lacks

capacity to consent):

I……………………………………………… (HCP’s name) agree that it is appropriate and in the patient’s

best interests for ………………………………………………… (carer name) to administer subcutaneous

medications to ……………………………………………..(patient name)who lacks capacity to consent.

Healthcare professional completing best interest assessment

Signature:………………………………………….. Job Title:……………………………………. Telephone Number………………………………………

(Adapted from St Joseph’s Hospice Carer Administration of sub-cutaneous injections procedure.

Version 2. 2019)

Informal Carer Administration of subcutaneous injections in the community setting. Exceptional Circumstances - COVID 19. V2 Review July 2020

28

Appendix 3 – Competence Assessment (Please complete a separate assessment for each carer)

To be completed by the Assessing Registered Nurse or Medical Professional

__________________________________________________________________________

Name of Assessor ………………………………..……………….. Designation/role …………………………………….

Place of work …………………………………………………………..Telephone Contact Number ……………………

Patient’s Name ……………………………………………………………………………………………………………………………

Address ……………………………………………………………………………………………………………………………………….

DOB: ………………………………………………….. NHS Number: ……………………………………………………………..

Carer’s Name ….……………………………………………………Date of assessment ……………………………………

Carer’s relationship to patient:…………………………………………………………………………………………………..

This assessment form should be completed by the carer and assessor together for each

episode of supervised practice.

Initial

Section A Knowledge

The carer:

Yes

/No

Carer Assessor

Is able to name and identify specific drug being used and common

potential side effects.

Is aware of how and who to contact in the case of queries or

untoward events

Is able to identify potential problems with injection site and their

likely causes (including sites that should not be used)

Section B Observation The carer:

Washes hands before preparing drugs and equipment required for the injection.

Checks injection site for redness, swelling or leakage before giving the medication

Checks drug preparation and dosage against patient’s prescription

Checks when drug was last administered

Checks expiry date on drug preparation (if expired –discard)

Ensures drugs are stored appropriately and away from sun light.

Draws up correct drug dosage using correct needle (NB: If patient does not require medication at this time please demonstrate using

water for injection)

Expels air correctly from syringe.

Removes needle from syringe and disposes of needle safely.

EITHER (preferred option):

Cleans Bionector with alcohol wipe and waits for this to dry

Flushes the line correctly

Connects syringe to Saf-T-intima line correctly & expels the drug

Flushes line after administering the drug with 0.5ml sterile water for injection

**NB If patient does not require medication at this time

Informal Carer Administration of subcutaneous injections in the community setting. Exceptional Circumstances - COVID 19. V2 Review July 2020

29

please observe carer flushing the line with 0.5ml water for

injection only**

OR (no lines available) ** This will only be assessed when

the patient is requiring a ‘as-needed medication’ **

Attaches correct needle for subcutaneous injection.

Inserts needle into the skin and gently expels the drug

Section C Post injection The carer:

Re-checks site for redness or leakage after injection.

Disposes of syringe and needle safely.

Documents that the injection has been given, recording the time, drug, dosage, signature in the Community Palliative Drug Chart

Completes the stock chart

Knows when to seek help/advice and how to obtain this. For example, if symptoms are not controlled and they feel unable to give the injection

Knows how to immediately respond to a needle stick injury and how to seek help following.

All stages above need to be met to meet competence.

……………………………………………. (name of carer) is competent to administer a subcutaneous injection via an injection or injection line.

Healthcare professional completing assessment

Signature:………………………………………………………………………….

Print:…………………………………………………………………………………..

Name:…………………………………………………………………………………

Job Title:……………………………………………….........................

Telephone Number:………………………………………………………..

Employer: …………………………………………………………………………

Date completed:……………………………………………………………

DATE Reassessment Due:……………………………………………..

**Please keep a copy of this assessment in the patient’s community nursing notes**

(Adapted from St Joseph’s Hospice Carer Administration of sub-cutaneous injections procedure.

Version 2. 2019.

The Lincolnshire Policy for Informal Carer’s Administration of As Required Subcutaneous Injections in

Community Palliative Care. Lincolnshire Community Health Services. Version 10. 2018)

Informal Carer Administration of subcutaneous injections in the community setting. Exceptional Circumstances - COVID 19. V2 Review July 2020

30

APPENDIX 4 - Carer’s Authorisation Chart to administer as required subcutaneous injections for Palliative Care Patients (Patient on opioids or eGFR <30)

PATIENT’s SURNAME

FORENAME:

DATE of BIRTH NHS Number:

Allergies or Adverse Drug Reactions : None known tick here NAME OF HEALTHCARE PROFESSIONAL

PRINT NAME:

SIGNATURE:

DESIGNATION:

BASE:

DATE:

DRUG &

strength

INDICATION FOR

USE

DOSE VOLUM

E

(MLS)

ROUTE FREQUENCY

Minimum

interval

ANY OTHER

COMMENTS

Convert usual opioid, seek advice if eGFR<30

PAIN

Low:

SC 1 hour If low dose

not effective

call for

advice*

before giving

high dose.

High:

Ondansetron

4mg/2ml

NAUSEA/

VOMITING

4mg

2mls SC 8 hours

Alternative score out ondansetron

NAUSEA/

VOMITING

Midazolam

10mg/2ml

AGITATION/

RESTLESSNESS

Low:

2.5mg

0.5ml SC 1 hour If low dose

not effective

call for

advice*

before giving

high dose.

High:

5mg

1ml

Hyoscine butyl

bromide

20mg/ml

RATTLY

BREATHING

20mg 1ml SC 2 hours

Convert usual opioid, seek advice if eGFR<30

BREATHLESSNESS

OR PERSISTENT

COUGH

SC 1 hour If breathless

open

window, sit

upright.

OTHER:

SC=subcutaneous injection either into SAF-T intima line or using syringe and needle

GUIDANCE FOR PRESCRIBER: (also complete usual community palliative care drug chart)

Check the following have been completed for each carer administering injections Consent form.

Assessment of carer’s competence in administering subcutaneous injections, using the competence assessment tool.

Doses to be as simple as possible think about vial sizes. Carers to record doses on Community Palliative Care Chart used by District

Nurses/visiting professionals.

Give a minimum interval between doses in hours for frequency and avoid abbreviations

GUIDANCE FOR CARER:

* Please phone Sirona Single Point of Access (1st line) on 0300 125 6789 or your local

hospice 2nd line (St Peter’s Hospice Advice line on 0117 9159430 or Weston hospice on 01934 423900) if:

Informal Carer Administration of subcutaneous injections in the community setting. Exceptional Circumstances - COVID 19. V2 Review July 2020

31

Any time if you have given 3 injections in total within a 24hour period to discuss whether it is appropriate to give additional injections, or whether a review is needed

If the symptom has not improved an hour (or sooner if you are worried) after giving the drug.

If you have administered the prescribed limit of the number of administrations which has been prescribed in 24 hours (this might be fewer than 3)

If you prefer to discuss with a HCP prior to administering the injection

You have any concerns, questions or queries at all related to injectable medication You no longer wish to give the subcutaneous injections

(Adapted from St Joseph’s Hospice Carer Administration of sub-cutaneous injections procedure (2019)

by Dr C Cornish 2020)

Informal Carer Administration of subcutaneous injections in the community setting. Exceptional Circumstances - COVID 19. V2 Review July 2020

32

Appendix 5 - Carer’s Authorisation Chart to administer as required subcutaneous injections for Palliative Care Patients (Opioid naïve patient, eGFR>30)

PATIENT’s

SURNAME

FORENAME:

DATE of BIRTH NHS Number:

Allergies or Adverse Drug Reactions :

None known tick here

NAME OF HEALTHCARE PROFESSIONAL

PRINT NAME:

SIGNATURE:

DESIGNATION:

BASE:

DATE:

DRUG INDICATION FOR

USE

DOSE VOLUME

(MLS)

ROUTE FREQUENCY

Minimum

interval

ANY OTHER

COMMENTS:

Morphine

injection 10mg/ml

PAIN

Low:

3mg

0.3mls SC 1 hour If low dose

not effective

call for

advice*

before giving

high dose.

High:

5mg

0.5mls

Ondansetron

4mg/2ml

NAUSEA/

VOMITING

4mg

2mls SC 8 hours

Alternative score

out ondansetron

NAUSEA/

VOMITING

Midazolam

10mg/2ml

AGITATION/

RESTLESSNESS

Low:

2.5mg

0.5mls SC 1 hour If low dose

not effective

call for

advice*

before giving

high dose.

High:

5mg

1ml

Hyoscine butyl-

bromide 20mg/ml

RATTLY

BREATHING

20mg 1ml SC 2 hours

Morphine

injection

10mg/ml

BREATHLESSNESS

OR PERSISTENT

COUGH

3mg 0.3mls SC 1 hour If breathless,

open a

window, sit

upright.

OTHER:

SC=subcutaneous injection either into Saf-T intima line or using syringe and needle

GUIDANCE FOR PRESCRIBER: (also complete usual community palliative care drug chart)

Check the following have been completed for each carer administering injections Consent form

Assessment of carer’s competence in administering subcutaneous injections, using the competence assessment tool.

Doses to be as simple as possible think about vial sizes. Carers to record doses on Community Palliative Care Chart used by District

Nurses/visiting professionals.

Give a minimum interval between doses in hours for frequency and avoid abbreviations

GUIDANCE FOR CARER:

* Please phone Sirona Single Point of Access (1st line) on 0300 125 6789 or your local

hospice 2nd line (St Peter’s Hospice Advice line on 0117 9159430 or Weston hospice on 01934

423900) if:

Any time if you have given 3 injections in total within a 24hour period to discuss

whether it is appropriate to give additional injections, or whether a review is needed

Informal Carer Administration of subcutaneous injections in the community setting. Exceptional Circumstances - COVID 19. V2 Review July 2020

33

If the symptom has not improved an hour (or sooner if you are worried) after giving the drug.

If you have administered the prescribed limit of the number of administrations which has been prescribed in 24 hours (this might be fewer than 3)

If you prefer to discuss with a HCP prior to administering the injection You have any concerns, questions or queries at all related to injectable medication You no longer wish to give the subcutaneous injections

(Adapted from St Joseph’s Hospice Carer Administration of sub-cutaneous injections procedure (2019)

by Dr C Cornish 2020)

34

Appendix 6a - Steps involved in administering a subcutaneous

injection not via a line (To be left in the patient’s home for use by the carer)

Before administrating any prescribed medicine check the Community Palliative

Care Drug Chart for the time that the last dose of an injection was given, making sure it is ok to give another. Also check when the last oral dose of

medication was taken for the same symptom (if applicable) Check the dosage and frequency of medication against the Community

Palliative Care Drug Chart and then the Carer’s Authorisation Chart, making

sure it is ok to give another dose.

1. Wash your hands with warm water and soap and dry well with a clean towel or kitchen roll. Put on gloves and apron.

2. Assemble all the equipment you need. Check the

packaging of all the equipment is intact and that products have not passed their expiry dates. Equipment needed:

• Blunt fill needle 18G • Safety needle 25G

• Syringe • Carers Authorisation chart • Tray or clean area to draw up

• Drug to be given • Sharps bin

3. Drawing up medication:

Check the label for medication name and strength making sure it matched the drug listed

the Community Palliative Care Drug Chart. Also check the expiry date.

Attach the blunt fill needle 18G to the syringe

Break open the ampoule of the drug to be given by snapping the top off.

A glass ampoule should be held in upright position. Check all fluid removed from neck of ampoule. If not, gently flick the top of the

ampoule until the fluid runs back down into it. If there is a dot on the ampoule ensure the dot is

facing away from you. Hold the ampoule in one hand, using the other hand to snap the neck of the ampoule away from you.

A plastic ampoule - simply twist the top of the ampoule until it is removed

Do not discard any of the ampoules until all of the

paperwork has been completed. Draw up the drug into the syringe If you have an air bubble into the syringe, push

the plunger in very slightly to remove the bubble.

35

Change the needle to Safety needle 25G

4. Assess the infection site for signs of

inflammation, oedema (swelling), infection and skin lesions – if any of

these are present you should use an alternative site. Decontaminate your hands again and put on gloves. Remove

the cap from the needle on the prepared syringe.

When giving a subcutaneous injection, it is important to gently pinch the skin

between the thumb and the first finger of your non dominant hand.

While continuing to grasp the skin press the plunger of the syringe and inject the

medicine smoothly and slowly. When all the medicine has been injected, remove the needle and release the skin.

Image of best sites for injection

5. Disposal of equipment: Immediately after the needle has been

removed from the patient, activate the safety device see below. Dispose of the

needle and syringe in to the sharps bin.

6. Write on the Community Palliative Care

Drug Chart the time, date, drug, dose,

route and sign to record you have given it.

7. Remove and dispose of gloves and apron.

8. Wash and dry your hands thoroughly.

If you have given 3 injections in a 24 hour period, Sirona SPA (district

nurses) on 0300 125 6789(1st line) or the relevant hospice: St Peter's Hospice

advice line 0117 9159430 or Weston Hospice advice line: 01934 423900.

Please remember you can also ring for advice if you feel the injections are not working or need any advice.

Needle stick injury

If you pierce or puncture your skin with a used needle, follow this first aid advice immediately:

Encourage the wound to bleed, ideally by holding it under running water.

Wash the wound using running water and plenty of soap. Don’t scrub the wound while you’re washing it.

Don’t suck the wound. Dry the wound and cover it with a waterproof plaster or dressing. Contact Avon Occupational Health on 0117 342 3400 for further advice within

an hour. (Adapted from: The Lincolnshire Policy for Informal Carer’s Administration of As Required

Subcutaneous Injections in Community Palliative Care. Lincolnshire Community Health

Services. Version 10. 2018. St Joseph’s Hospice Carer Administration of sub-cutaneous

injections procedure. Version 2. 2019)

36

Appendix 6b - Steps involved in administering a subcutaneous injection via a Saf-t-intima line. (To be left in the patient’s home for use by the carer)

Before administrating any prescribed medicine check the Community Palliative

Care Drug Chart for the time that the last dose of an injection was given, making sure it is ok to give another. Also check when the last oral dose of

medication was taken for the same symptom (if applicable) Check the dosage and frequency of medication against the Community

Palliative Care Drug Chart and then the Carer’s Authorisation Chart, making

sure it is ok to give another dose. A line called a Saf -T-Intima is a simple device that sits under the skin, usually

on the arm, so that when an injection is given it is only injected into the device and not directly into the skin of the patient.

This is a Saf-T-intima line it will have a Bionector ‘bung’ on

the end

1. Wash your hands with warm water and soap and dry

well with a clean towel or kitchen roll. Put on gloves and apron.

2. Check the site of the injection device for inflammation, redness, hardness or soreness.

If you are concerned please phone Sirona Single Point of Access on: 0300 125 6789

3. Assemble all the equipment you need. Check the packaging of all the equipment is intact and their expiry dates.

Equipment needed: • Blunt fill needle 18G

• Syringe – Luer-lock • Carers Authorisation chart

• Tray or clean area to draw up • Drug to be given and sterile water for injection (for

flushing)

Alcohol swab • Sharps bin

4. Drawing up medication:

Check the label for medication name and strength making sure it matches the drug listed on the Community Palliative Care Drug Chart. Also check

the expiry date. Attach the blunt fill needle 18G to the syringe

Break open the ampoule of the drug to be given by snapping the top off.

A glass ampoule should be held in upright position.

Check all fluid removed from neck of ampoule. If not,

37

gently flick the top of the ampoule until the fluid runs back down into it. If there is a dot on the ampoule

ensure the dot is facing away from you. Hold the ampoule in one hand, using the other hand to snap the neck of the ampoule away from you.

A plastic ampoule - simply twist the top of the ampoule until it is removed

Do not discard any of the ampoules until all of the

paperwork has been completed.

Draw up the drug into the syringe

If you have an air bubble in the syringe, push the plunger in very slightly to remove the bubble.

Use a separate syringe and blunt needle to draw up any other medications you may be giving and a 0.5ml sterile water flush as above.

NB Do not give more than 2mls total volume of

medication (excluding the line flush) at any one time.

5. Swab the end of the Bionector ‘bung’ with an alcohol

wipe and wait until dry approx. 30 seconds.

Bionector Bung

6. Remove the blunt needle from the syringe and place

the blunt needle directly into the sharps container.

7. Before administration of medication flush the Saf-T-

Intima line with 0.5ml of water for injection. Attach the luer-lock syringe containing the water for injection

by using a twisting or screwing motion until the syringe is securely attached into the Bionector ‘bung’. Slowly push the plunger until the barrel is empty, and

then remove the syringe by untwisting.

8. Then attach the luer-lock syringe containing the

medication using a twisting or screwing motion until the syringe is securely attached into the Bionector

‘bung’. Slowly push the plunger of the syringe until the barrel is empty, and then remove the syringe by untwisting.

9. Follow administration of the medication flush the line with 0.5ml of water for injection

10. Discard all the syringes and any remaining needles in the sharps container.

11. Write on the Community Palliative Care Drug Chart the time, date, drug, dose, route and sign to record you have given it.

12. Remove and dispose of gloves and apron.

13. Wash and dry your hands thoroughly.

If you have given 3 injections in a 24 hour period, Sirona SPA (district nurses) on 0300 125 6789 (1st line) or the relevant hospice: St Peter's Hospice advice line 0117 9159430 or Weston Hospice advice line: 01934

423900

38

Please remember you can also ring for advice if you feel the injections are

not working or need any advice.

Needle stick injury

If you pierce or puncture your skin with a used needle, follow this first aid advice immediately:

Encourage the wound to bleed, ideally by holding it under running water. Wash the wound using running water and plenty of soap. Don’t scrub the wound while you’re washing it.

Don’t suck the wound. Dry the wound and cover it with a waterproof plaster or dressing.

Contact Avon Occupational Health on 0117 342 3400 for further advice within an hour.

Adapted from: The Lincolnshire Policy for Informal Carer’s Administration of As Required

Subcutaneous Injections in Community Palliative Care. Lincolnshire Community Health

Services. Version 10. 2018. St Joseph’s Hospice Carer Administration of sub-cutaneous

injections procedure. Version 2. 2019.

39

Appendix 7 – Information leaflet for carers giving Sub-cutaneous injections

Introduction Seriously ill people, who are nearing the end of their lives, may want to be cared for at home, but as they become more poorly they often cannot swallow oral medication

or liquids. A range of injections can be provided to keep at home just in case they are needed to help with symptoms which may occur.

Common symptoms can be pain, nausea/vomiting, agitation/restlessness, rattley breathing, or breathlessness. These troublesome symptoms can be often be relieved

by extra medication given by a small injection, which is usually given by a member of the Community Nursing team. This is often called “As required medication”. This can be at any time of the day or night, and sometimes relatives can be taught how

to give these injections to ensure comfort and the control of pain, and other symptoms. This is similar to when you might have given oral (by mouth) pain relief/

other oral medication, but just the route of giving has changed as the patient is no longer able to swallow. Teaching carers to learn how to do this instead of having to wait for a nurse to

attend is a method that has been used successfully in parts of Australia for many years, and more recently in the UK.

If the person needs regular medication or frequent injections and can not swallow then usually the Community Nursing team can set up a syringe pump to give

continuous medication under the skin. You will not be asked to change the pump. The Community Nurses will do this every 24 hours but you may still need to give

occasional extra injections to control symptoms.

You do not have to do these injections unless you want to, and feel comfortable to

do so. If you do, the doctors, nurses and Hospice nurses will support you in this task

and teach you how it is done.

If at any time you feel you can no longer do these injections please phone Sirona Single Point of Access (1st line) on 0300 125 6789 who can arrange for a Community Nurse(s) to administer the injections instead. If you want advice or support you can also contact your local hospice: St Peter’s Hospice Advice line on 0117 9159430 or Weston hospice on 01934 423900.

What are the steps involved? If you as a carer would like to do this, some steps need to be followed to make sure

everyone involved is happy that it is a safe thing to do.

The doctors and nurses will assess if it might be helpful and possible. This

would include thinking about what medicine might be needed, how often, and how complicated the situation is.

The patient will be asked if they would like their carer to give injections. You as the carer will be asked if you would like to learn more about it. The doctor or nurse will talk to the you about benefits and difficulties, for

example It can be difficult for carers as it places a burden on them – you do not

have to do it; you can change your mind. Near the end of life, injections may need to be given; these will not cause

death but may happen near the time of death

It can be a positive way for carers to help support their family members.

You will have training to show you how to give an injection- including a ‘competence

assessment’. You will need to show that you are able to give an injection on your

40

own. Please remember to say if you are happy to do this. You will be given written information about how often they can give injections, including when to ask for help.

The training given to you is very important; in order to make sure that the patient is given the correct care for these symptoms. You should not train anyone else who is helping to look after the patient. If you are unable for any reason to give an injection

the healthcare team should be contacted to give the patient any as required medication. It is important for you to know it is legal for carers to give symptom-

relieving medication as long as they are supported to do so. If after discussion with and assessment by a registered healthcare professional it is

agreed by both you and the healthcare professional that you are able to give injections the following will happen:

1. EITHER:

The registered healthcare professional will insert a line so that when you give the injection you only inject into the line, not directly into the skin of the patient.

OR: In certain circumstances carers may be taught to administer the medication

directly into the skin, not via a line. 2. You will be taught what the medication(s) are for, how much to give, when to

give it and any likely side effects.

3. You will be taught how to draw up the required amount of drugs into a syringe and how to give the injection.

4. If you are administering the drug via a line you will be taught how to flush the line with 0.5 ml of water for injection before and after giving the medication.

5. You will be shown how to and asked to document each injection given.

6. You will be advised to only give up to a maximum of 3 injections in any 24hour period before contacting a Sirona Single Point of access(1st line) or your local

hospice (2nd line) for further help and advice. 7. A healthcare professional will change the line every 7 days and at each visit they

will review the patient’s regular medication so that hopefully further injections

may not be needed.

IMPORTANT CONTACTS:

Single Point of Access (Community Nursing Team): 0300 125 6789

St Peter's Hospice Advice Line 24/7: 01179 159 430

Weston Hospice: 01934 423 900

Frequently asked Carers’ questions

What if I can’t go ahead with giving injections? You will receive training in how to give an injection, and this can be repeated until

you feel happy. The healthcare professional giving the training will assess if you are safe to give an injection. If you or the person providing the training do not feel that you are safe to do this, then the patient will continue to receive injections when

needed by a Community Nurse.

What if I or the person I am caring for change our minds about giving

injections? If at any point you want to stop giving injections, this is fine. Also your relative (the patient) can say at any point that they want you (their carer)

to stop giving injections. Please contact one of the numbers above and the community nursing team will take over this responsibility.

41

(Adapted from: Carers administration of as-needed subcutaneous medicines. Helix Centre.

24th March 2020. https://subcut.helixcentre.com/. St Joseph’s Hospice Carer Administration

of sub-cutaneous injections procedure. Version 2. 2019).

42

Symptoms and medication

This leaflet provides information about symptoms that your relative or friend might experience.

This information relates to subcutaneous injections, which should be given for symptoms when your relative or friend is unable to swallow medication by

mouth. You will be advised to only give up to a maximum of 3 injections in any 24

hour period before contacting a Sirona Single Point of access(1st line) or

your local hospice (2nd line) for further help and advice. If you are concerned or would like to discuss with a healthcare professional

before giving subcutaneous medication please phone for advice: o Sirona Single Point of Access (1st Line) 0300 1256789 o your local hospice (2nd line) St Peter’s Hospice Advice line 0117

9159430 o Weston Hospice 01934 423900.

A. Breathlessness:

Step 1:

You may wish to try some relaxation techniques. Opening a window or door can help and keep the room cool. Cooling the face by using a cool flannel or cloth can help.

Portable fans are not recommended for use during outbreaks of infection

Step 2:

You only need to give medicine if your relative or friend is distressed by their breathing. If they are breathing fast but seem comfortable and

settled you do not have to treat it. If they are distressed and you are going to administer medication please look at the Carer’s Authorisation Chart and choose the medication for breathlessness.

If there are 2 dose options give the lower dose

If their breathing has not improved an hour after giving the medication you

can repeat the medication with the SAME dose.

If you are not sure about giving the 2nd dose or distress from breathing is still not controlled after the 2nd dose please see above for who to contact for

advice.

If you have noticed that on several occasions the lower dose is not that effective and you are often needing to give a 2nd dose phone for advice.

B. Fever:

Fever is not harmful but can be treated if the symptoms cause distress Signs and symptoms of a fever

shivering

shaking chills

aching muscles + joints other body aches may feel cold despite body temperature rising

Step 1 Try a cool flannel applied across the face

Reduce room temperature - open a window or door Wear loose clothing Oral fluids if able to drink

43

Step 2 If able to swallow please give your own supply of paracetamol by mouth.

If not able to swallow you can discuss paracetamol suppositories with your GP.

Two Paracetamol 500mg tablets can be given four times a day, 4 hours

apart.

Do not use more than 8 Paracetamol 500mg tablets per day (Max 4g/24h)

C: Pain People may experience pain due to existing illnesses and may also develop

pain as a result of excessive coughing or immobility. At the end of life they

may grimace or groan to show this. Not being able to pass urine can cause pain.

Step 1 A medication to help relieve pain will have been prescribed - please check

the name and dose of this on the Carers Authorisation chart.

If there are 2 dose options give the lower dose If their pain has not improved an hour after giving the medication you can

repeat the medication with the SAME dose.

If you are not sure about giving the 2nd dose or distress from pain is still not controlled after the 2nd dose please see above for who to contact for

advice. If you have noticed that on several occasions the lower dose is not that

effective and you are often needing to give a 2nd dose please phone for advice.

D: Agitation/Distress

Some people may become agitated and confused towards the end of life. They may seem confused at times and then seem their normal selves at

other times. People who become delirious may start behaving in ways that are unusual

for them- they may become more agitated than normal or feel more sleepy and withdrawn.

Pain may worsen agitation (see pain advice section)

Not being able to pass urine may also worsen agitation Step 1:

A medication to help relieve agitation/distress will have been prescribed - please check the name and dose of this on the Carers Authorisation chart.

If there are 2 dose options give the lower dose

If their agitation/distress has not improved an hour after giving the medication you can repeat the medication with the SAME dose.

If you are not sure about giving the 2nd dose or agitation/distress is still not controlled after the 2nd dose please see above for who to contact for advice.

If you have noticed that on several occasions the lower dose is not that

effective and you are often needing to give a 2nd dose phone for advice. Step 2:

Please telephone for advice if: o you are concerned your relative or your friend is unable to pass

urine.

o Their agitation is persistent and distressing.

44

D. Nausea & Vomiting

Sometimes people may feel nauseated or sick when they are dying A medication to help relieve this will have been prescribed – please check

the name and dose of this on the Carers Authorisation chart

phone for advice if: o The nausea or vomiting has not settled after giving the medication

E. Rattly Breathing

Before someone dies their breathing can often become noisy. Some people call this the ‘death rattle’. Try not to be alarmed by this, as it is normal. It is due to an accumulation of secretions and the muscles at the back of the

throat relaxing. Medicines intended to dry up secretions may not work, so try to be

reassured that if your friend or relative is asleep or unconscious they are unlikely to be distressed.

Step 1:

Repositioning your friend or relative in the bed by using pillows to support them at a different angle can help reduce rattily breathing

Step 2: Medication that may help relieve this will have been prescribed – please

check the name and dose of this on the Carers Authorisation chart.

Step 3: If your friend or relative seems distressed by their noisy breathing despite

waiting an hour after the measures above please phone for advice.

45

Appendix 8

Summary of steps for clinicians to follow for carer administration of injections procedure

1. Obtain agreement from patient (ideally without carer present).

2. Obtain agreement from a GP and discuss with District Nurses if known by a

DN team.

3. Obtain agreement from carer (ideally without patient present).

4. Assess suitability of carer and complete Criteria for Suitability check list

(Appendix 1).

5. Gain consent from patient and carer. Complete consent form (Appendix 2).

Make Best interests Decision in line with Mental Capacity Act if patient lacks capacity.

6. Teach process and assess competence. Complete Competence Assessment (Appendix 3.)

7. Ensure you discuss:

That it can be difficult for carers to undertake this as it places a burden on them - they do not have to do it; they can change their minds.

That near the end of life injections may need to be given; these will not cause death but may be required near the time of death.

That the locality SPA/District Nurse Team (first line) or relevant hospice (second line) can be contacted 24/7 for advice.

8. Insert SAF-T Intima line if injections likely to be needed in next 7 days and

attach a Bionector connector to the end.

9. Ensure Community Palliative Care Drug Chart and Carers Authorisation Chart (Appendix 4 or 5) have been completed by a prescriber. Show the carer how

to complete the Community Palliative Care Drug Chart including completing their specimen initials on the front of the chart.

10. Show the carer how to complete the stock card and remind them to contact the GP for repeat prescriptions if stock running low.

11. Remind the carer that they should contact Sirona SPA (1st line) and relevant

local hospice (2nd line) in the following circumstances:

Any time if they have given 3 injections in total within a 24hour

period to discuss whether it is appropriate to give additional injections, or whether a review is needed.

If the symptom has not improved in an hour (or sooner if they are worried) after giving the drug.

They have any concerns, questions or queries at all related to

injectable medication.

They no longer wish to give the subcutaneous injections.

12. Give the Carers information leaflet (Appendix 7).

13. Leave all paperwork in the house. Document fully on EMIS. Add a warning to EMIS to record assessment of suitability and outcome.

14. E.g. Carer (add full name) is suitable for administration of SC medication.

Full process completed.

15. Arrange for a weekly face to visit for line change and support.

46

Section 4:

Information for people caring at

home for a relative or friend

who is nearing the end of life

due to any diagnosis including

coronavirus

This is a leaflet written for people who are caring for someone who is very unwell and may be nearing the

end of their lives. It is written for use during the coronavirus outbreak to provide the best possible care and

support when there may be a higher than usual demand on community nurses.

It may be useful for the very unwell person to read if able. It contains some practical tips and advice about

medications to help with symptoms.

47

1. Who to call for advice

Page 3

2. General information about caring for a dying relative/ friend at home

Page 4

3. What practical things you can do when caring for someone in their last

days and hours of life

Page 5

4. Symptoms and medicines

I. Breathlessness

II. Cough

III. Fever

IV. Pain

V. Agitation/ Distress

VI. Nausea & Vomiting

Page 8 Page 9 Page 10 Page 11 Page 12 Page 13 Page 14

5. How to give a suppository

Page 15

6. How to give medicine into someone’s cheek

Page 17

7. What to do after your friend or relative has died

Page 18

8. Grief

9. Cleaning

Page 19

10. Carer’s diary for giving medicines

Page 20

Contents

48

1. WHO TO CALL FOR ADVICE

For help with care, equipment and giving medicines please phone your community (District) Nurse:

Bristol, North Somerset and South Gloucestershire Single Point of Access

Tel. 0300 125 6789

Gloucester Single Point of Access

Mon to Fri 8am to 4pm, Tel. 0300 421 6071

Any other time, Tel. 0300 421 0555

Bath Single Point of Access

Mon to Fri 8am to 6pm contact your usual GP surgery

Any other time, Tel. 01225 831 400 or 01225 831 500

Care coordination centre also available 8am to 8pm (if unable to get

through to your usual GP surgery) Tel. 0300 247 0200

For advice regarding medicines and symptoms phone the community palliative care team (hospice)

advice line:

St Peter’s Hospice 24/7, Tel. 01179 159 430

Weston Hospicecare 24/7, Tel. 01934 423 900

Dorothy House Hospice, Tel. 0345 013 0555 (option 1)

If you need a doctor:

You can phone your usual general practice number

For an out of hours doctor telephone 111 or use 111.nhs.uk 999

In an emergency you can call 999, for example if your relative or friend has a fall and you need help to get them back into bed.

49

2. GENERAL INFORMATION

We as a team are very grateful that you have been able to care for your relative or your friend at home at

the end of their life; it is a loving and generous thing to do.

We hope you have been given information and feel supported with this decision.

We acknowledge it may feel overwhelming and frightening at times. It may be helpful to identify a family

member or friend that you can call for support during this time.

We feel it is important to remember a few things:

Look after yourself.

Take breaks: Having some time to yourself can help you relax and feel more able to cope. This can help the person you are caring for too.

Your GP will be available for telephone advice.

If you yourself are taking any medicines regularly it is important you have a supply of these. Your support contact may be able to visit your community pharmacy for you.

Try to eat well. If you can, make time to prepare and sit down for a cooked meal. If you don’t have time, perhaps you could ask a friend to help you by dropping round some food.

Getting enough sleep can be difficult too. Many people say that when they are caring for someone who is very ill, they find it difficult to relax at night. You may be thinking and worrying about them and this can keep you awake, or you may need to help them regularly at night. Take naps if you can.

Do not underestimate the importance of just being with your relative or friend, even if you feel you

aren’t doing much. Just be with them.

If possible, creating a sense of calm around your relative or friend can help them to feel settled.

Talking to your relative or friend can help reassure them, even if they appear to be asleep.

Listen to the radio or music and watch TV as normal. Perhaps read out loud. You may take

this opportunity to create new memories.

If you feel overwhelmed it may be useful to phone your support person to chat.

It can also be useful for you to pause, take a breath and consider what you are doing or giving. There

is no rush to do anything at this time.

When someone is dying medication can be very useful for managing symptoms. These medicines will

not hasten death, but it is possible that your relative or friend could happen to die soon after

receiving a drug for their symptoms.

50

Pain

What you can do to practically care for someone

who is in their last days and hours of life

While people rarely complain of thirst at the

end of life, a dry mouth can be a problem due

to breathing most ly through their mouth.

It’s important to keep lips moist with a small

amount of un-perfumed lip balm to prevent

cracking. Regularly wet inside their mouth

and around their teeth with a moistened

toothbrush whether he or she is awake or has

lost consciousness. Check for sore areas and

white patches on the tongue, gums and inside

the cheek which can be sore. If this happens

tell the person’s healthcare professionals as it

can be treated easily.

When approaching the end of life, people

of ten sleep more than they are awake and

may drif t in and out of consciousness.

Try to imagine what the person you are caring

for would want. Provide familiar sounds and

sensations, a favourite blanket for example,

or piece of music. Keep the environment

calm by not having too many people in the

room at once and avoid bright lighting. This

can reduce anxiety even when someone is

unconscious. Even when they cannot respond,

it is important to keep talking to them as they

can most probably hear right up until they die.

Some people may be in pain when they are

dying. If they are less conscious they may

grimace or groan to show this. There are

medicines that can be given to ease pain.

Always check their positioning in bed to see

if this can also help. They may be too weak to

move and this can cause discomfort. Consider

if they have any areas that are known to hurt,

for example a bad back, and remember this

when positioning them.

It is important to be aware of what to expect

and how to make the experience as comfortable

as possible.

Your health team will advise you on the

medicat ions that can help with cont rolling

symptoms experienced at the end of life.

The person will require washing at least once

a day and regular turning every 2-4 hours to

protect their skin f rom developing pressure sores.

Alternate their position from lying on their

back to each side. You can use pillows or

rolled up towels to support them and also to

support under their arms and between and

under their legs. When you are washing the

person, look for signs of redness, or changes

in the colour or appearance of their skin.

Check the back of the head and ears, the

shoulder blades and elbows and the base of

the spine, hips and buttocks, ankles, heels

and between the knees.

Communication and environment

Feeling sick

Moving

Mouth care

Somet imes people can feel nauseated or sick

when they are dying.

If vomiting, and unable to sit up, turn the

person on their side to protect their airway.

There are medicines that can be given to help

relieve this.

Going to the toilet

Towards the end of life, a person may lose

cont rol of their bladder and bowel. Even

though we expect someone to go to the toilet

less as they eat and drink less, contact the

health care team that is looking af ter them if

they have not passed any urine for 12 hours or

more as it can be uncomfortable.

Keep the person comfortable by regularly

washing them and changing pads if they

are wet or soiled.

https://helixcentre.com

Accessed 5.4.2020

51

Breathlessness and cough can be another cause

of agitat ion and dist ress and it can make it

dif fi cu l t to commu ni cat e. Do n’ t expect the

person to talk and give them t ime and space

to respond. Reassure them that the unpleasant

feeling will pass.

You can offer reassurance by talking calmly

and opening a window to allow fresh air in.

If possible, sit the person up with pillows

rather than lying fla

t

as thi s can hel p the

sensation of not being able to breathe.

Before someone dies their breathing of ten

becomes noisy. Some people call this the

‘death rat t le’. Try not to be alarmed by this,

it is normal. It is due to an accumulat ion of

secret ions and the muscles at the back of

the throat relaxing. There are medicines that

can be given to help dry up secret ions if it

is a problem.

Washing

Somet imes it may be too disrupt ive for the

person to have a full wash. Just washing their

hands and face and bot tom can feel ref reshing.

To give a bed bath, use two separate fla

n

nel s,

one for the face and top half of the body

and one for the bottom half. Start at the top

of the body, washing their face, arms, back,

chest, and tummy. Next, wash their feet and

legs. Finally, wash the area between their legs

and their bottom. Rinse off soap completely

to stop their skin feeling itchy. Dry their skin

gently but thoroughly. Only expose the parts

of the person’s body that are being washed at

the time – you can cover the rest of their body

with a towel. This helps to keep them warm

and maintains their dignity.

Some people can become agitated and appear

dist ressed when they are dying. It can be

f rightening to look af ter someone who is

rest less. It ’s important to check if the cause is

reversible like having a full bladder or bowel

which can be reversed by using a catheter

to drain the urine or medicines to open the

bowels. Your health team can assess if this

is necessary.

Check if their pad is wet to see if they are

passing urine or if they are opening their

bowels. If it’s not either of these things, there

are things you can do and give to help. Try to

reassure the person by talking to them calmly

and sitting with them. Touch can be effective

in doing this too. There are also medicines that

can be given to help settle and relax someone.

Caring for a dying person can be exhaust ing

both physically and emot ionally. Take t ime

out to eat and rest . Try to share the care with

other people when possible and remember it is

OK to leave the person’s side to have a break.

Agitation or restlessness

Looking after yourself

Eating

As the body shuts down it no longer needs food

and flu

i

d to keep it goi ng. Wh en a per son is

dying they of ten lose their desire to eat or drink

and fin

a

l ly thei r abi lity to swa l low . They can lose

weight rapidly.

This is of ten dif ficu l t to accept because we of ten

equate food with health and feeding people as

an act of love. However, hunger and thirst are

rarely a problem at the end of life.

Continue to offer a variety of soft foods and

sips of water with a teaspoon or straw for as

long as the person is conscious (but allow

them to refuse it). It’s important not to force

food or drink onto someone who no longer

wants it. Rem em ber t o si t t hem

up w hen of f er ing f ood and f l u

i

ds to

avoid chok ing.

When a person is no longer able to swallow

some people want them to have flu

i

ds vi a ot her

routes like a drip, but at the end of life this

offers lit t le, if any, benefi t. The body cannot

process the flu

i

d like a heal thy body can and it

can be harmful to art ific

i

al ly feed and hydr at e.

Risks include infect ion at the insert ion site or

in the blood, and flu

i

d over l oad resul ti ng in

swelling or even breathing problems.

Version 1.0 (18 March 2020) At t ribut ion-NonCommercial 4.0 Internat ional (CC BY-NC 4.0)

Breathlessness and cough

52

4. SYMPTOMS AND MEDICINES

You can telephone for support any time that you feel unsure.

Please consider calling for advice if you have given 2 doses of medication for one symptom in four hours

and it is still uncontrolled.

Also call if your relative or friend has needed more than 3 doses of medication for one symptom in a 24

hour period.

(i) Breathlessness

Step 1

- You may wish to try some relaxation techniques.

- Opening a window or door can reduce air hunger and keep the room cool.

- Cooling the face by using a cool flannel or cloth can help.

- Portable fans are not recommended for use during outbreaks of infection.

Step 2

You only need to give medicine if your relative or friend is distressed by their breathing. If they are breathing fast but seem comfortable and settled you do not have to treat it. If you are not sure call your local hospice for advice.

You have been supplied with a bottle of morphine liquid. The instructions on the bottle suggest what dose to give.

o Squirt the lower dose of oral morphine into the cheek and allow to absorb, without swallowing, up to once every hour when required.

o If you have tried the lower dose several times and it hasn’t been that effective then you can try the higher dose. The maximum volume for each cheek is 2.5 mls. The higher dose can be divided if needed by giving half into each cheek.

o If the morphine is accidentally swallowed that is OK.

o If more than 2 doses are needed in 4 hours please telephone for advice using the numbers above.

See guide below on giving medicine to be absorbed into the cheek

After 2 doses of oral morphine if still in distress:

Step 3

Check medication label to confirm lorazepam dose.

You may need to moisten your relative or friend’s mouth with some water on a toothbrush.

Place HALF or ONE lorazepam tablet under the tongue and allow to dissolve, up to

53

every 6 hours, when required, for anxiety or agitation. Your relative or friend should try not to swallow for 2 minutes after this.

Step 4

If breathlessness is persistent and distressing please telephone for advice using the numbers above.

(ii) Cough

Step 1

If your relative or friend is awake enough to swallow, simple non-drug measures may help, e.g. a teaspoon of honey.

Elevate their head with pillows if able. Step 2

You only need to give medicine if your relative or friend is distressed by their cough. If you are not sure call your local hospice for advice.

You have been supplied with a bottle of morphine liquid. The instructions on the bottle suggest a range with a lower dose and a higher dose:

o Squirt the lower dose of oral morphine into the cheek and allow to absorb, without swallowing, up to once every hour when required.

o If you have tried the lower dose several times and it hasn’t been that effective then you can try the higher dose. This higher dose can be split by giving half into each cheek.

o If the morphine is accidentally swallowed that is OK.

o If more than 2 doses are needed in 4 hours please telephone for advice using the numbers above.

See guide below on giving medicine to be absorbed into the cheek

(iii) Fever

Fever is not harmful but can be treated if the symptoms cause distress

Signs and symptoms of a fever:

shivering

shaking

chills

aching muscles + joints

other body aches

may feel cold despite body temperature rising

54

Step 1

Try a cool flannel applied across the face

Reduce room temperature - open a window or door

Wear loose clothing

Oral fluids if able to drink

Step 2

If able to swallow please give your own supply of paracetamol by mouth.

Suppositories should not be given by mouth.

If unable to swallow consider inserting TWO paracetamol suppositories rectally.

Paracetamol can only be given four times a day, 4 hours apart, regardless of route.

Do not use more than 8 suppositories or tablets per day

(Max 4g/24h)

See guide below on how to give a suppository

(iv) Pain

People may experience pain due to existing illnesses and may also develop pain as a result of excessive coughing or immobility. At the end of life they may grimace or groan to show this.

Not being able to pass urine can cause pain Step 1

o You have been supplied with a bottle of morphine liquid. The instructions on the bottle suggest a range with a lower dose and a higher dose:

o Squirt the lower dose of oral morphine into the cheek and allow to absorb, without swallowing, up to once every hour when required.

o If you have tried the lower dose several times and it hasn’t been that effective then you can try the higher dose. This higher dose can be split by giving half into each cheek.

o If the morphine is accidentally swallowed that is OK.

o If more than 2 doses are needed in 4 hours please telephone for advice using the numbers above.

See guide below on giving medicine to be absorbed into the cheek

55

(v) Agitation & Distress

Some people may become agitated and confused towards the end of life. They may seem confused at times and then seem their normal selves at other times.

People who become delirious may start behaving in ways that are unusual for them- they may become more agitated than normal or feel more sleepy and withdrawn.

Pain may worsen agitation (see pain management table)

Not being able to pass urine may also worsen agitation

Step 1

Check medication label to confirm lorazepam dose.

Place HALF or ONE lorazepam tablet under your relative or friend’s tongue and allow to dissolve, up to every 6 hours, when required, for anxiety or agitation. They should try not to swallow for 2 minutes after this.

You may need to moisten your relative or friend’s mouth with some water on a toothbrush.

Step 2

Please telephone for advice if

o you are concerned your relative or friend is unable to pass urine

o agitation is persistent and distressing

(vi) Nausea & Vomiting

Sometimes people may feel nauseated or sick when they are dying

Your friend or relative’s discharge pack will contain either prochlorperazine maleate or ondansetron to treat any nausea.

Step 1

Either

Check medication label to confirm prochlorperazine maleate dose.

Place ONE or TWO prochlorperazine maleate 3mg buccal tablet along the top gum under the lip and allow it to dissolve twice daily for nausea and vomiting. Try not to chew or swallow the tablet. Maximum 4 tablets a day.

Or

Place ONE ondansetron tablet on their tongue, and allow it to dissolve. You can use this every 8 hours when required to relieve nausea.

You may need to moisten your relative or friend’s mouth with some water on a toothbrush before giving these medicines.

Step 2

If nausea persists an hour after trying step 1

56

Check medication label to confirm hyoscine hydrobromide dose.

Place hyoscine hydrobromide under the tongue or suck or chew tablet (every 8 hours if need be).

Step 3

If nausea is persistent and distressing despite trying steps 1 + 2 please telephone for advice.

(vii) Rattly Breathing

Before someone dies their breathing often becomes noisy. Some people call this the ‘death rattle’. Try not to be alarmed by this, as it is normal. It is due to an accumulation of secretions and the muscles at the back of the throat relaxing.

Medicines intended to dry up secretions may not work, so try to be reassured that if your friend or relative is asleep or unconscious they are unlikely to be distressed.

Step 1

Check medication label to confirm hyoscine hydrobromide dose.

Place hyoscine hydrobromide under the tongue or suck or chew tablet (every 8 hours if need be).

You may need to moisten your relative or friend’s mouth with some water on a toothbrush before giving this medicine.

Step 2

See guidance for managing agitation/distress above

Step 3

Repositioning your friend or relative in the bed by using pillows to support them at a different angle can help reduce rattly breathing

Step 4

If your friend or relative seems distressed by their noisy breathing despite waiting an hour after the measures above please telephone for advice.

57

5. HOW TO GIVE A SUPPOSITORY

Adapted from Gloucester Hospitals NHS foundation trust

1. Wash and dry your hands thoroughly and put on gloves.

2. Have the medication ready. Remove the suppository you are going to give from the pack.

3. Position the individual on their left side if possible. You may require help from a friend or relative to do this safely for you.

4. Remove or pull their underwear down and out of the way.

5. Gently pull the uppermost knee towards their chest as far as is comfortable.

6. Lift the upper buttock to expose the rectal area.

7. Apply a small amount of lubricant to the suppository and to the tip of the gloved finger you will use to insert it with.

8. Insert the suppositories (one at a time if multiple to be given) through the anus. Gently push them inside to approx. 1 inch.

58

9. Keep the individual on their side for 5 minutes if comfortable to prevent medication being expelled. After this gently reposition them back to a comfortable position.

10. Remove your gloves and wash your hands.

NB. If positioning the individual on their side is

difficult consider keeping them on their back but

lifting their legs up. Again, help from a friend or

relative to do this may be needed.

6. HOW TO GIVE MEDICINE TO BE ABSORBED INTO THE CHEEK

1. Support the head. Gently insert the syringe into the patient’s mouth between the cheek and lower gums.

2. Slowly administer the liquid in the syringe by pushing the plunger downwards. Repeat on the other side if needed.

59

7. WHAT TO DO AFTER SOMEONE HAS DIED

Please find below a practical checklist for what you need to do now:

o You do not need to call the police or ambulance.

o Call your nominated family member or support person if needed.

o During the day: call the District Nurse Single Point of Access team or your GP surgery to inform

them of the death.

o During the night: call the District Nursing Single Point of Access team.

o You can care for your relative or friend after death as much as you feel able to. If possible, lie

them straight in the bed.

o Keep the room cool if possible by turning off the radiator.

o Do not allow pets in the room unattended.

8. GRIEF

Many feelings can occur at this time, for example numbness, disbelief, exhaustion, relief, sadness and

anger. Under these extraordinary circumstances you may feel emotions more acutely. Grieving in

isolation can be one of the hardest aspects of the current situation. Do reach out to others however you

can - online, via telephone, letters and videos.

If difficult feelings persist or you feel you are not coping then seek help. Your local hospice can provide

bereavement support and these organisations may also be useful:

Cruse Bereavement Care 0808 808 1677 https://www.cruse.org.uk/

Winston’s Wish Support for bereaved children and young people 08088 020 021 https://www.winstonswish.org/

The Good Grief Trust https://www.thegoodgrieftrust.org/

60

9. CLEANING

Cleaning an area with normal household disinfectant will reduce the risk of passing the

infection on to other people.

Wherever possible, wear disposable or washing-up gloves and aprons for cleaning. These

should be double-bagged, then stored securely for 72 hours then thrown away in the

regular rubbish after cleaning is finished.

Using a disposable cloth, first clean hard surfaces with warm soapy water. Then disinfect

these surfaces with the cleaning products you normally use.

Pay particular attention to frequently touched areas and surfaces, such as bathrooms,

grab-rails in corridors and stairwells and door handles.

If an area has been heavily contaminated, such as with visible bodily fluids, from a person

with coronavirus (COVID-19), consider using protection for the eyes, mouth and nose, as

well as wearing gloves and an apron.

Wash hands regularly with soap and water for 20 seconds, and after removing gloves,

aprons and other protection used while cleaning

For latest government guidance see:

https://www.gov.uk/government/publications/covid-19-decontamination-in-non-

healthcare-settings/covid-19-decontamination-in-non-healthcare-settings

20

10. CARER DIARY FOR MEDICINES

It is not essential to keep this diary, but you may find it helps to record the date and time of any

medicine doses given.

Patient name + Date of Birth:

Drug Form and strength

Indication for use

Dose (see medication guide for frequency and maximum dose)

How often to give a dose

Record of administration Record date and time of doses given

Morphine sulfate 10mg/5mL Oral liquid

Pain, shortness of breath or cough

Dose 1…………….

Up to once every hour

Dose 2…………….

Either Ondansetron 4mg dispersible tablets

Nausea/ Vomiting

4mg Every 8 hours

Or Prochlorperazine maleate 3mg buccal tablet

3-6mg (one to two tablets)

twice daily (max 12mg/day)

Lorazepam tablets 1mg

Panic/ Agitation/ Restlessness

Half to one tablet (500microgram to 1mg)

Every 6 hours

Hyoscine hydrobromide 300mcg tablets

Rattly breathing

Half to one tablet (150 to 300micrograms)

Every 8 hours

Paracetamol 500mg suppositories

Symptoms of fever

2 suppositories (1g)

Up to once every four hours

Adapted from St Peter’s Hospice and BNSSG Carer Administration of Subcutaneous Injections in the Community Setting Exceptional

Circumstances - COVID 19 CDaniel

Contact us:

Healthier Together Office, Level 4, South Plaza, Marlborough Street, Bristol, BS1 3NX

0117 900 2583

bnssg.healthier.together@nhs.net

www.bnssghealthiertogether.org.uk

Section 5: Verification and certification of death

102

1. Background

The Coronavirus Act updated guidance for the management of verification of death and medical certification of the cause of death (MCCD) during the pandemic. This includes:

A relaxation of previous legislation about verification in that any suitable person is able to verify deaths and,

Changes concerning the completion of the MCCD by medical practitioners

It is anticipated that the pandemic will generate increased demand for verification of ‘expected’ and

‘unexpected but not a surprise’ deaths in the community. Work is underway to train a wide range of

community colleagues – clinical and non-clinical - to be able to verify death, in case this is needed. The aim

of doing this is to ensure that we are prepared in advance to manage a potential significant increase in

demand for verification of death, that we reduce distress for families and carers, that we best support

people in feeling competent/capable of doing this, and that we minimise face to face contact if a person has

Covid-19. Recent guidance has been released nationally around verification of death that has now been

incorporated into this section https://www.gov.uk/government/publications/coronavirus-covid-19-

verification-of-death-in-times-of-emergency/coronavirus-covid-19-verifying-death-in-times-of-emergency

2. Key messages (subject to future update as further guidance is released) 2.1 Verification of death Clinicians should always consider whether a death is expected, ‘unexpected but not a surprise’, or unexpected. Verification can be undertaken or supported by a clinician if the death is unexpected or ‘unexpected but not a surprise’. Unexpected deaths should not be managed by primary and community care, but referred to the police via 101. It is considered best practice not to have carers/family members verify death. All registered professionals must follow their professions’ code of practice and conduct. These require professionals to acknowledge the limits of their professional competence and only undertake practice and accept responsibility for those activities in which they are competent. Non-medical professionals should not experience any pressure to verify deaths. If they are not comfortable or equipped to verify, they should defer to medical colleagues or refer on to NHS 111, the patient’s general practice or another provider of primary medical services. If they are content to verify, they can use remote clinical support (see below). There are currently three options to enable verification of death:

OPTION 1: A community colleague who is trained in death verification undertakes

the verification. Currently, this is most likely to be a healthcare professional (HCP) e.g.

nurse in nursing home, district nurse. However, verification training is being developed

to enable, for example, HCA’s and carers to support verification of death.

*Please be mindful that this training will not currently have been undertaken by a full

range of staff and therefore some may not feel able to undertake verification of death

103

OPTION 2: A clinician supports verification remotely, if the patient is with (or will

be) with a community HCP who is not trained in death verification.

o A HCP not trained in death verification can use the Support form for Verification

of life extinct (see below) ‘in-hours’ as a prompt to collect the required

information, and then speak with the clinician (e.g. GP) who supports and

documents the verification on their electronic record. If a community HCP will be

attending the deceased anyway after death (e.g. to remove a syringe driver),

explore whether that HCP can verify using this or the previous option. The

established and existing form from out of hours has been used as a basis to

support verification during the in hours period.

OPTION 3: Home visit by a clinician to undertake face to face verification. This is

more likely to be appropriate/ required if:

o The deceased is in their own home, or in a residential care home setting without

community HCP involvement in their care.

o The death is expected or ‘unexpected but not a surprise’ but the patient has not

been seen (face to face of video) in the 28 days prior to death. In this situation, a

GP face to face verification of death will avoid the need for the GP issuing the

MCCD to also attend the deceased. However, if GP verification is not possible,

the patient can still be verified by other clinicians, a trained community colleague

(option 1) or remotely supported verification (option 2).

2.2 Certification of death The Coronavirus legislation updates the requirements on the GP issuing the MCCD. There are

a number of facets to this, but if the patient has not been seen (video or face to face) in the 28

days prior to death, a medical practitioner needs to see the body after death to be able to

issue the MCCD. In this situation, it would be sensible for that verification to be undertaken by

a medical practitioner (GP) so that a second face to face assessment is not required by the

certifying GP.

Further guidance can be accessed via the following link:

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/

file/877302/guidance-for-doctors-completing-medical-certificates-of-cause-of-death-covid-

19.pdf

The process for sending the MCCD to the Registrar for Birth, deaths and marriages is that

the form should be completed, signed, stamped and then a scanned copy sent via email.

Each patient this applies to should have a separate email sent. Paper versions are to be kept

and sent on at a later stage (yet to be agreed when this will be in terms of the pandemic).

In the circumstance that section ‘c’ is circled (not seen after death by a Medical

Practitioner) then the Medical Practitioner should state the following:

104

Date last seen alive by them (if not within 28 days of death please refer to Coroner)

If not seen alive please state NEVER (Please refer to Coroner)

The doctor MUST also -

Sign

Print their name (clearly)

Write their GMC number (clearly)

If referral to the coroner is required the doctor should do this.

Also below is the Sirona care & health current guideline for the verification of death for

information on how community health care staff are being asked to best support the new

guidance and legislation. This will also be updated as required in line with new guidance as it

develops.

105

Support form for verification of life extinct – in hours

Equipment to assist verification of death:

pen torch or mobile phone torch

stethoscope (optional)

watch or digital watch timer appropriate personal protective equipment (PPE)

Process of verification in this period of emergency

1. Check the identity of the person – for example photo ID.

2. Record the full name, date of birth, address, NHS number and, ideally, next of kin details.

3. The time of death is recorded as the time at which verification criteria1 are fulfilled.

Unexpected deaths, whether child or adult, must be notified to the coroner using agreed policies. In all such cases,

lines, drains, endotracheal tubes, for example, must not be removed without the express approval of the coroner.

The verifier, and the clinician providing remote support (if used) have a responsibility to consider, as far as possible,

whether there’s any reason to notify the death to the police or coroner.

If a parenteral infusion is in place, for example syringe drivers in a community setting, and the death is not notifiable

to the coroner, the infusion must be stopped at the time of verification of death by simply removing the battery.

Removing the device, accurate recording of residual drugs and safe disposal of equipment and medicines should take

place in line with local policies and procedures.

Following verification of death, care after death must be performed according to the wishes of the deceased as far

as reasonably possible. The deceased should be transferred to the mortuary or funeral directors as soon as

practicable. Public Health England (PHE) guidance on the care of the deceased with suspected or confirmed

coronavirus must be followed.

Every reasonable practical step must be made to inform people important to the patient when a patient’s condition

is deteriorating or immediately following the patient’s death, if earlier contact has not been possible. In some

instances, people important to the patient may request not to be disturbed at night. Any such agreement made must

be documented and notification of death made at the agreed time.

General considerations

it’s important that you have enough time to carry out this procedure in a compassionate manner

the below steps should be recorded in your organisation’s host IT system

be aware of any cultural or religious requirements

identify the person verifying and their role

ensure the verifier has considered privacy and dignity prior to verifying – such as ensuring only essential

persons are in attendance or checking with family whether they wish for only persons of the same sex to

verify the body

establish the circumstances immediately prior to the death and any patient history. You, and the verifier,

need to be satisfied that there is no reason to refer this death to the police or coroner

This form is for use by community clinicians who have not undertaken verification of death training during

in-hours General Practice.

This form is to support verification of death and the standardised recording of information about this. This

aligns with the information that would also be taken during the Out of Hours period by Brisdoc clinicians.

106

The clinician supporting verification of death will send you this form to collect relevant information about

the circumstances of the death. Please complete parts 1 and 2 before the clinician calls you back to discuss

your findings.

The form is intended to support you to examine the deceased patient and prepare the information required

by the clinician. If you are unsure about the answers to any questions on the form, please discuss these with

the clinician. It is the medical records made by the clinician which act as the formal verification of death,

not this form. The clinician retains responsibility for undertaking the verification of death.

You can retain a copy of this form on the patient’s records.

PART 1: Patient information Name of patient

DOB

Address

Time and date of death

The death was (*delete as appropriate) *Expected / Unexpected, but not a surprise

Did the patient have a DNAR? (*delete as appropriate)

*Yes/ No

Has the patient seen their GP in the last 28 days (in person or video consultation)? (*delete as appropriate)

*Yes/ No/ Not known

Diagnosis/ diagnoses causing death (if known)

Brief description of events prior to death (e.g. EOL care/ syringe driver, peaceful)

Who was present when the patient died? Please provide name and relationship to patient (e.g. nurse, wife, son)

Have the NOK/ family been informed that the patient has died? (*delete as appropriate)

*Yes/ No

Do family/ NOK and/ or staff have concerns about circumstances/ care prior to death? (*delete as appropriate)

*Yes/ No If yes, please ensure that you discuss these concerns with the clinician

If known, is the patient going to be cremated? (*delete as appropriate)

*Yes/ No/ Not known

PART 2: Examination to diagnose death *please delete as appropriate to log your findings for each assessment criteria 1-6

1

Observe for spontaneous movement

*No movements present

*Spontaneous movements

107

2 Does the patient respond to a painful stimulus? E.g. sternal rub, nail bed pressure

*No response to painful stimulus *Responds to painful stimulus

3 Assess body temperature

*Cool compared to ambient temperature/ usual body temperature

*Usual/ warm body temperature

4 Assess breathing sounds and/ or chest movements for 3 minutes (you may need to advise removal of clothing to expose the chest or abdomen)

*Absent breathing sounds/ movement for 3 minutes

*Breathing sounds heard or chest movements observed

5 Check pulses for 1 minute each

Radial pulse

Femoral pulse

Carotid pulse

*Absent radial pulse 1 minute *Absent femoral pulse 1 minute *Absent carotid pulse 1 minute

*Any or all pulses present

6 Check pupils. Are they dilated and fixed (unresponsive to light in both eyes using a torch)?

Pupils are dilated and unresponsive to light

Pupils not dilated and/ or do respond to light

Wait 10 minutes and repeat the actions above

PART 3: Discussion with clinician (to be completed by community clinician)

Name of Community clinician completing form

Role/ job title

Professional registration number

Name of clinician undertaking verification

Role/ job title

Professional registration number

Once you have completed parts 1-3 of the form, and the clinician has confirmed that they have verified the death:

You can retain a copy of this form on the patient’s file (if required)

Please proceed to contact the patient’s/ family’s preferred Funeral Director for them to collect the deceased,

or ask the family to do this

Be clear about removal from the deceased or safe keeping of items such as jewellery. Inform the key

person(s) of the next steps in the process and the range of options available to them.

108

Guideline for the Verification of Death

This document can only be considered valid when viewed via Sirona’s intranet site. If this document is printed into hard copy or

saved to another location you must check that the version number on your copy matches that of the one on-line. The document

applies equally to full and part time employees, bank and agency staff.

Version 11 Issue date: April 2020 Review Date: March 2023

APPLICABLE TO

All clinicians, therapists and care workers, employed by Sirona working in Community Services, inpatient Units and

Residential Services.

IMPLEMENTATION

Local cascade by managers - key points for implementation:

Ensure all staff expected to maintain competence in verifying death have completed the training available via the Learning Management System and are confident and competent to verify death following the prescribed procedure.

Make staff aware of the Sirona Staff Wellbeing Line for wellbeing support and the helplines for practical support at St Peters’ Hospice: 01179159430, and Weston Hospice: 01934423900.

Ensure all staff who provide health & care services are aware of the existence of the policy and how to access and implement it.

Temporary changes to legislation on certification and verification in the Coronavirus Act, enacted March 2020 via CQC on Death verification https://www.cqc.org.uk/guidance-providers/gps/nigels-surgery-13-who-can-confirm-death ; and

An MCCD update at https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/03/COVID-19- Act-excess-death-provisions-info-and-guidance-31-03-20.pdf are interpreted to mean the following subject to further guidance:

o Any suitable person is able to verify deaths; and a registered professional is not required for a verification if other staff are competent;

o Families are able to register deaths from home; o There is no longer a need for a second independent medical practitioner for cremation forms; and o Medical practitioners can certify a death if there has been contact (remote or face to face) within the last 28

days prior to death.

109

CONSULTATION PROCESS

Key individuals involved in developing the document

Name Designation

Jon Moore Clinical Quality Lead

Circulated to the following individuals/groups for consultation

Name Designation Date

Alison Griffiths Head of Locality Services – Kingswood and Out of

Hours 26th June 2019

Emily Denham Head of Locality Services – Severnvale 26th June 2019

Cathy Daffada Lead for Inpatient and Discharge Services 26th June 2019

Sue Parris Head of Specialist Services 26th June 2019

Tricia Davis Head of Operations – Residential and Extra Care 26th June 2019

Roy Sharma Medical Director 26th June 2019

Carrie Wedgwood Head of Adult and Specialist Services 26th June 2019

Details of approval by Lead Director

Director Designation Date approved

Jenny Theed Director of Nursing and Operations

Mary Lewis

Dr Kate Rush 3rd April 2020

Circulated to the following Committee for Ratification

Name of Committee(s) Date ratified

Clinical Quality Forum

VERSION CONTROL

Version Updated By Updated On Summary of changes from previous version

5 Jane Cook February 2016

Section 3.0

Section added on Death due to Industrial Disease to clarify that nurses can verify in these circumstances with GP permission.

Appendix A: Action Flowchart

110

Amended to include information about death due to

industrial disease.

6 Jon Moore July 2019 Guideline has undergone a total rewrite – please treat as

new version.

7 Jon Moore November 2019

Addition of new regulations on notification of deaths to

Coroner, further advice on recording verification and

removal of paediatric exclusions

8 Hannah Layton April 2020

Updated to reflect new legislation from March 2020 including CQC on Death verification https://www.cqc.org.uk/guidance-

providers/gps/nigels-surgery-13-who-can-

confirm-death ; and

MCCD update https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/03/COVID-19-Act-excess-death-provisions-info-and-guidance-31-03-20.pdf

9 Jon Moore April 2020 Suggested amendments added by Hannah Layton

10 Hannah Layton

Dr Kate Rush April 2020

Updates to remove the need for the use of a stethoscope

as may be required and prescribing updates

11 Hannah Layton April 2020 Amendment to VoD policy to correct XX

111

CONTENTS

Section

Contents

1 Introduction

2 Key Principles

3 Advance Decisions on Resuscitation

4 When Resuscitation Should Not be Commenced

5 When Resuscitation Can be Discontinued

6 Procedure for Verifying Death

Method of Verifying Deaths

Special Circumstances

When Not to Verify a Death

Expected Deaths

Unexpected (but No Surprise) Deaths

Unexpected Death

7 Links to procedural documents

8 References

Appendices

1 Method of Verifying Death Algorithm

2 Expected Deaths

3 Unexpected (but No Surprise) Deaths

4 Unexpected Deaths

5 Equalities Impact Assessment

112

1. INTRODUCTION

In patients with cardio-pulmonary arrest, vigorous resuscitation attempts must be undertaken whenever there is a chance

of survival. Where there is a suspicion of or the patient is confirmed to have Coronavirus, rescuers must only perform

compression-only CPR until appropriate PPE can be donned.

Nevertheless, it is possible to identify patients in whom there is absolutely no chance of survival, where resuscitation would be

both futile and distressing for relatives, friends and healthcare personnel or where there is valid evidence of a resuscitation

decision having been made in advance. The views of an attending General Practitioner (GP), Ambulance Doctor or relevant third

party should also be considered. This guideline outlines the organisations process for the Verification of Death (sometimes referred

to as Confirmation of Death or Recognition of Life Extinct/RoLE). Verification of death is defined as deciding whether a person is

deceased and is a procedure which can be undertaken by either a registered Nurse or Paramedic. Certification of death requires a

registered medical practitioner.

The aims of this guideline are to:

1. Provide a timely and standardised approach to the management of most deceased patients presenting to Sirona services. 2. To avoid unnecessary onward referrals between healthcare providers, causing unnecessary delays and distress. 3. To reduce the unnecessary utilisation of Coroner’s Officers. 4. To avoid unnecessary attendance of duplicate skills and resources.

This guideline explores the situations where it would be appropriate for a clinician to verify a death. It does not consider the making

and recording of advance decision on resuscitation or any decisions about resuscitation in children.

For ease of reading, service users / residents / clients will be referred to throughout this document as individuals, until the point at

which an individual is deemed to require medical treatment, from when they will be referred to as a patient. Post verification of

death, individuals will be referred to as the deceased, in line common healthcare terminology.

2. KEY PRINCIPLES

The key principles of this guideline are to:

1. Ensure inappropriate re-direction of care is avoided. 2. Enable appropriately trained clinicians to verify death in a timely manner (within one hour in an inpatient setting and within

four hours in a community setting). 3. Ensure inappropriate resuscitation attempts are avoided in the absence of an advanced decision on resuscitation having

been made.

3. ADVANCE DECISIONS ON RESUSCITATION It is the expectation of this guideline that a CPR decision will be in place prior to death and verification. However, it is possible that

there will be cases when a patient’s death is;

Expected but no discussion about CPR has taken place (or where the death is expected but the individual chose not to make a Do Not Attempt Resuscitation decision),

Unexpected (but no surprise), or

Unexpected. In situations where clinicians are not aware that an explicit decision has been made in advance about CPR, and there are no signs unequivocally associated with death, there should be an initial presumption that clinicians will make all reasonable efforts to resuscitate the patient in the event of cardiac and respiratory arrest.

113

Advance decisions are usually documented within Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) orders, Advanced

Care Plans (ACP), Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) documents, Treatment

escalation plan (TEP) or Advanced Decision to Refuse Treatment (ADRT).

4. WHEN RESUSCITATION SHOULD NOT BE COMMENCED

There are situations where it may be obvious, or expected, that resuscitation should not and / or would not be attempted. An example is where a clinician is familiar with a patient’s condition and documented resuscitation plans, such as being directly involved with palliative care in the End of Life setting or in the presence of one or more conditions unequivocally associated with death. All of the conditions listed below are unequivocally associated with death and resuscitation should not be attempted;

1. Hypostasis: the pooling of blood in congested vessels in the dependent part of the body in the position which it lies after death (see guidance note A below)

2. Rigor Mortis: the stiffness occurring after death from the post mortem breakdown of enzymes in the muscle fibres (see guidance note B below).

3. Massive cranial and cerebral destruction: where the injuries are considered by the Nurse / Paramedic to be incompatible with life.

4. Hemicorporectomy (or similar massive injury): where the injuries are considered by the Nurse / Paramedic to be incompatible with life.

5. Decomposition/Putrefaction: where tissue damage indicates that the patient has been dead for some hours, days or longer.

6. Incineration: the presence of full thickness burns with charring of greater than 95% of the body surface. Guidance note A: Initially hypostatic staining may appear as small round patches looking rather like bruises, but later these coalesce to merge as the familiar pattern. Above the hypostatic engorgement there is obvious pallor of the skin. The presence of hypostasis is diagnostic of death. In extremely cold conditions hypostasis may be bright red and in carbon monoxide poisoning it is typically ‘cherry red’ in appearance. Guidance note B: Rigor Mortis occurs first in the small muscles of the face, next in the arms, then in the legs (30mins to 3hours). The recognition of Rigor Mortis can be made difficult where death has occurred from tetanus or strychnine poisoning. In some, rigidity never develops whilst in other it may become apparent more rapidly. Rigor should not be confused with Cadaveric Spasm which develops immediately after death following intense activity, affecting one group of muscles. In true Rigor Mortis the whole body is affected. 5. WHEN RESUSCITATION CAN BE DISCONTINUED In most patients where a Return of Spontaneous Circulation (ROSC) is not achieved on scene, despite appropriate Advanced Life

Support (ALS) and treatment of any potentially reversible causes, little is to be gained from transferring these patients to hospital.

Conveying a patient in cardiac arrest to hospital is not easy, through the logistics of having to move a patient down stairs, off the

floor or into an ambulance, each of which may cause an interruption in chest compressions as well as the risks associated with

manual handling. Conveying a patient in a vehicle traveling under emergency conditions is not without risk to the patient and the

clinical team.

Consequently, there may be situations where a resuscitation attempt has been commenced (by bystanders, family or other

healthcare professionals), but if the following are identified, may be discontinued;

The presence of a valid DNACPR, ACP, ReSPECT document, TEP or ADRT which states the wishes of the patient not to undergo attempted resuscitation.

114

A patient in the final stages of a terminal illness where death is imminent and unavoidable and CPR would not be successful, but for whom no formal DNACPR decision has been made / documented.

There would be no realistic chance that CPR would be successful if ALL of the following exist together; - 15 minutes since onset of cardiac arrest, - No bystander CPR not commenced prior to the arrival of the clinician, - The absence of drowning, hypothermia, poisoning / overdose or pregnancy, - Asystole for >30 seconds recorded via ECG.

Submersion for longer than 1.5hours (NB: submersions NOT immersion).

Where asystole continues despite 20 minutes of ALS (assuming drowning, hypothermia, poisoning or overdose, and pregnancy have been excluded)

Offer relatives the opportunity to be present during any resuscitation attempt, providing their physical presence and behaviour does

not interfere with clinical care. Although priorities during the management of a cardiac arrest lie with the patient, it is important to

consider the relatives who may also be present. Relatives are also patients in this setting and sensitive treatment of relatives may

help the mourning process and minimise subsequent grief. Explain to the relatives as soon as possible during the resuscitation, the

gravity of the situation and the care that is being administered. If a decision is made to terminate the resuscitation attempt, consider

inviting the relative(s) to be with the patient before CPR is stopped (if they are not already present) so that they can spend time

with their loved one before they die.

6. PROCEDURE FOR VERIFYING DEATH There are three scenarios in which a death may occur;

Expected,

Unexpected but no Surprise and

Unexpected.

Below is generic guidance on the method of verifying death for Sirona staff, patient relatives, and carers, which should be followed

in addition to guidance, given specifically for each scenario.

Method of Verifying Deaths

All of the following techniques must be utilised in order to reliably verify a death;

1. No response to painful stimuli. 2. Absence of respiratory activity (breathing), determined by observation, after a minimum of one minute. 3. Absence of carotid (neck) pulse after palpation for one minute. 4. Pupils remain fixed or unresponsive and unresponsive to light. 5. The presence of any features in section 4 – When Resuscitation Should Not Be Commenced

o The results of these observations must be recorded in the patients’ EMIS record and where held, any paper notes (NB: in paper notes the clinician verifying the death must sign and print their full name, status / role, date and time of carrying out the procedure), along with the time (using 24hr clock) the death was verified (as ‘Verification of Death at xx:xx’). In EMIS this should be documented using the Sirona Verification of Death Template and a warning created. This needs to state ‘Deceased Alert – advised by *** / date***’, be entered at the earliest opportunity and made available to all.

If removing parenteral medication, documentation should also include drugs delivered by this route, amount remaining still to be

infused and time of disconnection.

This guidance is summarised in Appendix 1 - Method of Verifying Death Algorithm.

115

Special Circumstances

Clinicians and others verifying deaths should be aware of special circumstances in which the Coroner must be informed and / or

where the body should only be handled by the Coroner’s chosen Funeral Director.

Where a clinician or other person ‘suspects’ a death is due to one of the special circumstances below, a medical practitioner may

not issue a death certificate and must notify the coroner according to the Notification of Deaths Regulations 2019. In these

situations, the death should be verified and then must be reported to the deceased’s GP (in-hours) -or- the GP OOH Professional

Line (out of hours) to inform them of the death and the special circumstance in which you feel it should be notified to the coroner. It

will then be their duty to consider the situation and report as necessary.

- Poisoning - Exposure to toxic substances - Medicinal products, controlled drugs or psychoactive substances - Violence/trauma/injury - Self-harm - Neglect (including self-neglect) - Due to and undergoing any treatment or procedure of a medical or similar nature - Disease/injury attributable to persons employment - Other unnatural death -

Plus where

- Cause of death unknown (despite suitable consultation with colleagues or a medical examiner) - Death occurred in custody or otherwise in ‘state detention’ (including MHA detention, but not DoLS) - No medical practitioner to sign MCCD in reasonable period - Identity of deceased unknown. -

Coronavirus or CoVid-19 is currently not a notifiable disease necessitating referral to the coroner.

When Not to Verify a Death

A death should not be verified by a Sirona clinician or other person in the following circumstances:

- A paediatric (<18 years) death where it has not been documented as expected in the patients clinical notes. - Deaths in a public place. - Any death where it would be appropriate to attempt resuscitation. - Where the deceased is known to the clinician other than in a professional manner. - Where the deceased is not receiving Sirona care.

Expected Deaths

Sirona services may be called upon specifically to verify an expected death, it is also likely that there will be situations where

Sirona staff are presented with a deceased patient following a death, such as where a patient dies shortly before a planned visit by

Sirona staff or where a patients dies in the presence of Sirona staff.

Examples of an expected death are where the deceased has been recognised as or suspected to be approaching the end / in the

last few days / weeks of their life or has been receiving Palliative care.

In this situation the clinician should;

- Verify the Expected Death. - Inform the family to contact their funeral director.

116

- Contact the deceased’s GP to inform them of the death (in-hours) -or- pass a message to the in-hours team to contact the deceased’s GP to inform them of the death (out of hours).

- Family/next of kin to make arrangements for collection of death certificate. - Document all actions taken, advice given and that this was an Expected Death (including the rationale why). Add EMIS

warning. - Leave the deceased in the care of the family / next of kin / staff.

This guidance is summarised in Appendix 2 – Expected Deaths

Unexpected (but No Surprise) Death

It is likely that Sirona services could be called upon to verify an unexpected (but no surprise) death. An unexpected (but no

surprise) death is one where the death has not been foreseen or predicted as imminent (for any reason) yet is unsurprising due to

the patient’s general health.

Examples of unexpected (but no surprise) deaths are where the deceased is a Nursing Home resident, has been suffering multiple

chronic diseases, is in the advanced stages of a chronic disease but had not previously thought to be approaching the end of their

life, or where the deceased was in the extremes of age.

Where additional support is required around whether this death is no surprise or not, the clinician should contact the deceased’s

GP (in-hours) or the GP OOH Professional Line (out of hours) requesting decision making support. An OOH clinician will not be

expected to attend.

In this situation the clinician should;

- Verify the unexpected (but no surprise) death. - Contact the deceased’s GP to inform them of an unexpected (but no surprise) death and take advice regarding their

decision to certify the death or not (in-hours) -or- pass a message to the in-hours team to contact the deceased’s GP to inform them of the death and contact the GP OOH Professional Line requesting they notify the deceased’s GP of an unexpected (but no surprise) death via their Practice Liaison Service (PLS) (an OOH clinician will not be expected to attend) (out of hours).

- Inform the family to contact their funeral director advising them that the deceased’s GP may require referral to the Coroner.

- Family/next of kin to make arrangements for collection of death certificate when issued. - Document all actions taken, advice given and that this was an unexpected (but no surprise) death (including the rationale

why). Add EMIS warning. Notify your line manager and complete an adverse event report. - Leave the deceased in the care of the family / next of kin / staff.

Where the deceased’s GP is not prepared to certify the death, follow the unexpected death guidance. This guidance is summarised in Appendix 3 – Unexpected (but no Surprise) Deaths

Unexpected Death

It is rare that Sirona staff will find themselves in a scenario where they are expected to verify an unexpected death. An unexpected

death is one where the death has not been foreseen or predicted as imminent (for any reason).

Unexpected deaths are often seen following acute episodes (such as Myocardial Infarction or Sepsis) or where patients deteriorate

rapidly and unexpectedly (such as in chronic disease or during management of a sub-acute / minor illness).

In this situation the clinician should;

- Verify the death.

117

- Where there is evidence of a suspicious death, call 999 immediately requesting immediate Police attendance and remain on scene. Otherwise contact the Police via 101 requesting the attendance of Coroners Representative at an unexpected death.

- Contact the deceased’s GP to inform them of an unexpected death (in-hours). This should be done as professional courtesy as the patients GP is neither expected to attend or certify the death.

- Inform the family that the Police will attend, acting as the Coroners Representative, and that the deceased is likely to require referral to the Coroner.

- Document all actions taken, advice given and that this was an unexpected death (including the rationale why). Add EMIS warning. Notify your line manager and complete an adverse event report.

- Leave the deceased in the care of the family / next of kin / staff.

This guidance is summarised in Appendix 4 – Unexpected Deaths

COVID 19

Changes in legislation mean that any suitable person is able to verify deaths including carers; and a registered professional is not required for a verification if carers and/or relatives are competent, see CQC on Death verification https://www.cqc.org.uk/guidance-providers/gps/nigels-surgery-13-who-can-confirm-death

MCCD update https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/03/COVID-19-Act-excess-

death-provisions-info-and-guidance-31-03-20.pdfhttps://services.parliament.uk/Bills/2019-21/coronavirus/documents.html.

Sirona supports you to be courageous in your decision making and expects staff to support a system approach to verification, to reduce duplication and distress for families/carers however; you can be called upon if already visiting to support the verification of a death. This is all said above as the purpose of the entire procedure.

Verification of Death online training is available for all staff and access for care home staff should be facilitated by Sirona colleagues where required.

In Out of Hours the application of this policy is no different to other times of the day.

7. LINKS TO PROCEDURAL DOCUMENTS

Sirona care & health Consent Policy Sirona care & health Supervision Policy Sirona care & health End of Life Policy

Sirona care & health Medical Emergency and Resuscitation Policy

8. REFERENCES

Royal College of Nursing: Confirmation or Verification of Death by Registered Nurses. https://www.rcn.org.uk/get-help/rcn-advice/confirmation-of-death

Resuscitation Council (UK): Pre-hospital Resuscitation Guidelines 2015. https://www.resus.org.uk/resuscitation-guidelines/prehospital-resuscitation/

Association of Ambulance Chief Executives: UK Ambulance Services Clinical Practice Guidelines 2016. https://aace.org.uk/clinical-practice-guidelines/

Ministry of Justice: Notification of Deaths Regulations 2019 https://www.gov.uk/government/publications/notification-of-deaths-regulations-2019-guidance

CQC on Death verification https://www.cqc.org.uk/guidance-providers/gps/nigels-surgery-13-who-can-confirm-death

MCCD update

https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/03/COVID-19-Act-excess-death-provisions-

info-and-guidance-31-03-20.pdf

118

Appendix 1 - Method of Verifying Death Algorithm

Cardiac Arrest or Pulseless and Apnoeic with open airway

Condition unequivocally associated with death?

DNACPR/ACP/ReSPECT/ADRT?

End of Life/Terminal Illness/Palliative Care?

Prolonged submersion?

Yes

Do not commence or cease resuscitation.

Verify death.

Document findings/observations in

patient records.

Remove and document parenteral medication.

No

1. Apnoeic (stopped breathing)

2. Absent breath sounds

3. Absent carotid (neck) pulse

5. Pupils fixed and dilated

6. No response to painful stimuli

Verify death.

Document findings/observations in patient records.

Remove and document parenteral medication.

119

Appendix 2 – Expected Deaths

Expected Death?

No

Treat as Unexpected (But No

Surprise) Death -OR-

Unexpected Death

Yes

Verify Death as per Method of Verifying Death algorithm

Inform the family to contact their funeral director or if alone, contact a funeral director yourself and attempt to contact the

family

Contact the deceased’s GP to inform them of the death (in-hours)

-or- Pass a message to the in-hours team to contact the

deceased’s GP to inform them of the death (out of hours).

Family/next of kin to make arrangements for collection of death certificate.

Document all actions taken, advice given and that this was an Expected Death (including the rationale why).

Leave the deceased in the care of the family / next of kin/staff.

120

Appendix 3 – Unexpected (but No Surprise) Deaths

Unexpected (but no surprise) Death?

No

Treat as expected Death -OR-

Unexpected Death

Yes

Verify Death as per Method of Verifying Death algorithm

Contact the deceased’s GP to inform them of an unexpected (but no surprise) death and take advice regarding their decision to certify the death

or not (in-hours) -or-

Pass a message to the in-hours team to contact the deceased’s GP to inform them of the death (out of hours) and contact the GP OOH Professional Line requesting they notify the deceased’s GP of an

unexpected (but no surprise) death via their Practice Liaison Service (PLS) (an OOH Clinician will not be expected to attend) (out of hours).

Inform the family to contact their funeral director advising them that the deceased’s GP may require referral to the Coroner. if alone, contact a funeral

director yourself and attempt to contact the family.

Family/next of kin to make arrangements for collection of death certificate when issued.

Document all actions taken, advice given and that this was an Expected (but no suprise) Death (including the rationale why).

Leave the deceased in the care of the family/next of kin/staff.

121

Appendix 4 – Unexpected Deaths

Unexpected Death?

No

Treat as Expected Death -OR-

Unexpected (but no surprise) Death

Yes

Verify Death as per Method of Verifying Death algorithm

Where there is evidence of a suspicious death, call 999 immediately requesting immediate Police attendance and remain on scene. Otherwise

contact the Police via 101 requesting the attendance of the Coroners Representative at an unexpected death.

Contact the deceased’s GP to inform them of an unexpected death (in-hours). This should be done as professional courtesy as the patients GP is

neither expected to attend or certify the death.

Inform the family that the Police will attend, acting as the Coroners Representative, and that the deceased is likely to require referral to the

Coroner.

Document all actions taken, advice given and that this was an Unexpected Death (including the rationale why).

Leave the deceased in the care of the family/next of kin/staff.

122

APPENDIX 5: EQUALITY IMPACT ASSESSMENT TOOL

To be completed and attached to any procedural document when submitted to the appropriate committee for consideration and

approval.

Yes/No Comments

1. Does the document/guidance affect one group

less or more favourably than another on the

basis of:

Race ☐Yes ☒No

Ethnic origins (including gypsies and travellers) ☐Yes ☒No

Nationality ☐Yes ☒No

Gender (including gender reassignment) ☐Yes ☒No

Culture ☐Yes ☒No

Religion or belief ☐Yes ☒No

Sexual orientation ☐Yes ☒No

Age ☐Yes ☒No

Disability - learning disabilities, physical disability, sensory impairment and mental health problems

☐Yes ☒No

2. Is there any evidence that some groups are

affected differently?

☐Yes ☒No

3. If you have identified potential discrimination,

are there any valid exceptions, legal and/or

justifiable?

☐Yes ☐No

4. Is the impact of the document/guidance likely to

be negative?

☐Yes ☒No

5. If so, can the impact be avoided? ☐Yes ☐No

6. What alternative is there to achieving the

document/guidance without the impact?

☐Yes ☐No

7. Can we reduce the impact by taking different

action?

☐Yes ☐No

123

Section 6:

Post End of Life Care in the Pandemic (Community

Deaths) Standard Operating Procedure (Sirona

contribution)

124

Standard Operating Procedure

Post End of Life Care in the Pandemic (Community Deaths)

Version: 2

Name of originator/author: Hannah Layton

Name of executive lead: Mary Lewis

Date ratified:

Review date:

To be read in conjunction with Verification of Deaths SOP and Home Visiting SOP.

Applicable to

All unregistered and registered community services staff.

Executive Summary

This SOP has been written to provide up to date guidance on the management of deaths in the community during the current COVID-19 pandemic. This is in relation to the current assumption that each individual is treated as a possible COVID-19 case. This version of the policy is written in the current context of a lack of COVID-19 testing in the community to confirm cases.

Implementation

The Verification of Death needs to have been completed before tending to the body of the deceased.

Since there is a small but real risk of transmission from the body of the deceased, we strongly advise that mourners should not take part in any rituals or practices that bring them into close contact with the body of an individual who has died from, or with symptoms of, coronavirus (COVID-19) for the duration of the pandemic. Given the very significant risk for vulnerable and extremely vulnerable people who come into contact with the virus, it is strongly advised that they have no contact with the body. This includes washing, preparing or dressing the body.

It is estimated that viable virus could be present for up to 48 to 72 hours on environmental surfaces in “room air” conditions. In deceased bodies, particularly those retained at refrigeration

125

conditions, and depending on the above factors, infectious virus may persist for longer and testing for suspected cases should be considered.

Due to the consolidation of respiratory secretions and rapid degradation of the virus when not sustained by live tissues, residual hazard from body fluid spillage will not present a risk. There is no requirement for a body bag for the deceased.

Version Control

Version Updated

By

Updated

On

Summary of changes from previous

version

1 Hannah Layton 15/04/20 Original document

2 Hannah Layton 16/04/20 Amendments following comments from

Alison Griffiths, Sue Parris, and Joanne

Linnitt

Practices that Involve Close Contact with the Body

There may be coronavirus (SARS-CoV2) on the body, which presents a small but real risk of transmission.

Since there is a small but real risk of transmission from the body of the deceased, we strongly advise that

mourners should not take part in any rituals or practices that bring them into close contact with the body

of an individual who has died from, or with symptoms of, coronavirus (COVID-19) for the duration of the

pandemic. Given the very significant risk for vulnerable and extremely vulnerable people who come into

contact with the virus, it is strongly advised that they have no contact with the body. This includes

washing, preparing or dressing the body.

It is recognised that household members may have come into contact with the virus over the course of the

illness in the deceased person. However, even in these cases, we advise against further contact with

the body without appropriate PPE as it may pose additional risk. The use of PPE in those

circumstances should only be under the supervision of a professional trained in the appropriate use of

PPE.

It is estimated that viable virus could be present for up to 48 to 72 hours on environmental surfaces in

“room air” conditions. In deceased bodies, particularly those retained at refrigeration conditions, and

depending on the above factors, infectious virus may persist for longer and testing for suspected cases

should be considered.

Due to the consolidation of respiratory secretions and rapid degradation of the virus when not sustained by

live tissues, residual hazard from body fluid spillage will not present a risk. Therefore, body bags are not

deemed necessary but may be used for other practical reasons. Placing a cloth or mask over the mouth

of the deceased when moving them can help to prevent the release of aerosols.

Where the deceased was known or suspected to have been infected with coronavirus (SARS-CoV2), there

is no requirement for a body bag.

Following a risk assessment of the potential post-mortem risk pathways, PHE has developed this advice in

line with the principles in the HSE guidance for droplet transmission risk, as set out in Managing

infection risks when handling the deceased.

126

Personal Protective Equipment (PPE)

AAPT and RCPath in consultation with PHE have published guidance on the PPE requirements for care of the deceased during the coronavirus (COVID-19) pandemic. The table below should be used by all staff who manage deceased persons.

Transmission-based precautions

Non-autopsy procedures, including admission of deceased, booking-in of deceased, preparation for viewing, release of deceased

Disposable gloves Yes

Disposable plastic apron Yes

Disposable gown No

Fluid-resistant (Type IIR) surgical mask (FRSM)

Yes

Filtering face piece (class 3) (FFP3) respirator

No

Disposable eye protection Yes

Staff members should ensure they are aware of Sirona's procedures regarding PPE and that they are using them correctly. Guidance on donning and doffing of PPE, is available within the Home Visiting SOP.

Appropriate use of PPE may protect clothes from contamination, but staff should change out of work clothes before travelling home. Work clothes should be washed separately, in accordance with the manufacturer’s instructions.

Those handling bodies should be aware that there is likely to be a continuing risk of infection from the body fluids and tissues of cases where coronavirus (SARS-CoV2) infection is identified, through either a clinical diagnosis or laboratory confirmation.

Household Members

Please advise household members to move to at least 2 metres away or another room.

It is recognised that household members of the deceased person may have already been exposed to the virus during the course of the preceding illness. However, steps should be taken to minimise further exposure, and these should be rigorously applied in cases where individuals who are not

127

part of the household and those at risk of severe illness would otherwise come into contact with the virus.

4. Residential Care, Nursing Homes, and Rehabilitation Units

If a resident dies of suspected coronavirus (COVID-19) in a residential care setting:

Ensure that all residents maintain a distance of at least 2 metres (3 steps) or are in another room from the deceased person.

Avoid all non-essential staff contact with the deceased person to minimise risk of exposure. If a member of staff does need to provide care for the deceased person, this should be kept to a minimum and correct PPE used as set out in the guidance on residential care provision (gloves, apron and fluid resistant surgical mask)

You should follow the usual processes for dealing with a death in your setting, ensuring that infection prevention and control measures are implemented as set out in the guidance on residential care provision.

Management of Laundry in Residential Care, Nursing Homes or in

Rehabilitation Units

Store clean linen and clothing appropriately in a designated area and in sufficient supply for the scale of work. Dispose of any linen or work clothing that is unfit for re-use (e.g. badly torn). Categorise any linen (e.g. sheets or blankets) used for transfer of the deceased at the point of use. For all used linen, provide a laundry container as close as possible to the point of use for immediate deposit. The used linen should not be:

Rinsed, shaken or sorted when removed;

Placed on the floor or other surfaces (e.g. locker or table top);

Rehandled once bagged.

Do not overfill laundry containers and do not put inappropriate items in them (e.g. needles or used equipment).

Place all infectious linen or work clothing (i.e. that has been used for the deceased who are known or suspected to have been infectious and/or that is contaminated with blood and/or other body fluids) directly in a water-soluble or alginate bag and secure it. Then place it in a plastic bag and secure it before placing it in a laundry receptacle. Dispose of items that are heavily soiled and unlikely to be fit for reuse as clinical waste.

Store all used and contaminated linen in a designated safe area while awaiting collection or laundering. The storage should be lockable if it is in a publicly accessible area. A suitable frequency for collection or laundering should be in place to avoid a build-up of linen receptacles.

Management of Laundry in the Deceased's Home

Place all work clothing that has been used for the deceased who are known or suspected to have been infectious and/or that is contaminated with blood and/or other body fluids) directly in a water-soluble or alginate bag and secure it. Then place it in a plastic bag and secure it before removing. Dispose of work clothing that is heavily soiled and unlikely to be fit for re-use as clinical waste. If

128

the family/relatives/carers wish to re-use any linen that is not heavily soiled, place it in a in a water soluble bag and instruct them to wash it in a washing machine in the bag, and remove heavily soiled linen and dispose of as clinical waste. If no-one else is present in the home then remove all used bed linen and dispose of it as clinical waste.

Management of cleaning and waste

Reusable equipment should be treated as per the Decontamination Policy at INTRANET LINK, and sharps as per the Sharps Policy at INTRANET LINK.

The deceased’s clothing is usually passed to the family by staff, unless it is soiled. In this case discuss the issue sensitively with the family and if they do not wish it to be returned, please dispose of it as healthcare waste.

Guidance for managing waste medicines in the Covid-19 pandemic is at Appendix 1.

Communications

COVID-19 related deaths attract media interest and NHS England (NHSE) and Public Health England (PHE) have strict communication protocols which must be followed. These are comprehensive for deaths in hospital and we are seeking guidance regarding deaths in NHS community settings. The full protocol is available at Appendix 2.

Outbreaks of two or more cases and/or deaths in Residential Settings must be reported to PHE whose Communications Team will work with Sirona’s Communication Team to reactively manage external communication/media inquiries.

Inquiries can come in within hours of a death, primarily due to the instant nature of Social Media.

Therefore the CICC/SICC should notify the Sirona Communication Team – sirona.commscell@nhs.net - as soon as practical after confirmation of a death due to COVID-19 related infection so they are aware and can liaise with NHSE/PHE as appropriate to ensure any announcement is in line with guidance.

Information should be statistical, that is, the number who have died, the location e.g. home, residential or inpatient unit, and geography. The Communications Lead on duty will liaise with the duty CICC Lead for communications support.

Contact with any health and care staff by the media should be referred to the Communications Team in line with existing Communication Policy.

References

Transmission-based precautions: Guidance for care of deceased during COVID-19 pandemic, Issued: 19

March 2020, The Royal College of Pathologists and, Association for Anatomical Pathology Technology

in conjunction with Public Health England https://www.rcpath.org/uploads/assets/0b7d77fa-b385-4c60-

b47dde930477494b/G200-TBPs-Guidance-for-care-of-deceased-during-COVID-19-pandemic.pdf

Guidance for care of the deceased with suspected or confirmed coronavirus (COVID-19) Published 31

March 2020 Public Health England https://www.gov.uk/government/publications/covid-19-guidance-for-

care-of-the-deceased/guidance-for-care-of-the-deceased-with-suspected-or-confirmed-coronavirus-

covid-19

129

Managing infection risks when handling the deceased: Guidance for the mortuary, post-mortem room and

funeral premises, and during exhumation, Health and Safety Executive, Jul 2018

https://www.hse.gov.uk/pubns/books/hsg283.htm

130

Managing waste medicines in the Covid-19 pandemic by community teams

At all times the best way of medicines being disposed is for a family member / friend of the patient to take them back to a community pharmacy for safe destruction which should always be our first line choice.

There will be a small number of situations where a patient passes away and there is a suspicion of risk of abuse / misuse of medicines by the family / other members of the public or the nurse has concerns. In this situation it is not appropriate to leave medicines behind in the patient’s home. These are usually taken back to the community pharmacy by the community nurse. These can include controlled drugs (CDs). This happens currently; however, Covid-19 poses additional challenges.

In a case where the patient has suspected or confirmed Covid-19 infection, medicines (along with other items) will need to be quarantined for a period of 72 hours prior to destruction. Pharmacies are not keen to accept patient-returned medicines in cases of suspected or confirmed Covid-19 patients, however, the risk vs. benefit of individual situations should be looked at in individual cases.

Scenarios and action to take when the patient is suspected or confirmed as having Covid-19:

Patient dies in hours or out of hours with relatives / next of kin that can take medicines back to a pharmacy after 72 hours - the time deemed acceptable to be non-Covid contaminated [this should be the majority of cases]

Patient dies in hours or out of hours with no-one identified as being able to take medicines to a pharmacy after 72 hours. No suspicion of abuse of medicines from anyone– community team double bag (recommended advice) the drugs labelled ‘old medicines to return to pharmacy after x date’. This medicine then becomes part of the patient’s estate which will be sorted at some point and the medicines returned to the pharmacy at this point by whoever is clearing the house after death.

Patient dies in hours with no-one identified as being able to take medicines to a pharmacy after the set time. Suspicion of abuse of medicines from someone or if the nurse has any other concerns or feels there are safety risks.

In this situation the medicines are double-bagged and returned to the community pharmacy by the community team taking all infection control measures into consideration. Pharmacies will then need to quarantine the medicine bags in the pharmacy for 72 hours. Community teams will need to state to the pharmacist that this is the safest option due to risk of abuse of medicines if left in the home and the fact that they cannot keep the drugs in their own possession for periods of time.

Patient dies out of hours with no-one identified as being able to take medicines to a pharmacy after the set time. Suspicion of abuse of medicines from someone or if the nurse has any other concerns or feels there are safety risks.

The community team will need to destroy the Controlled Drugs (Schedule 2,3 and 4(part 1)) in a CD destruction kit (see SOP on intranet) and then double bag this with the rest of the medicines to be stored at a locality base in quarantine (ie clearly labelled and in a place that is not accessible

APPENDIX 1

131

by everyone) and returned to a community pharmacy the next day (at all times using appropriate PPE). In this scenario, it is expected that the risk of misuse is already known and therefore to plan for 2 members of staff (one can be an unregistered staff member) to visit at this time and to collect a CD destruction kit from the store (Cossham hospital extended care team base for South Glos, Amelia Nutt team base for Bristol, Elton Rehab Unit (contact the night staff) for North Somerset).

Community teams are advised that when taking medicines to pharmacies that the reason for taking medicines to them is clearly communicated with the benefit vs risk discussion. There may be objections to taking back medicines but this needs to be clearly explained that this has been discussed as a system-wide approach and that they can contact the Local Pharmaceutical Committee for support on this as they have been involved in discussions. The pharmacies have also had a letter from the Police regarding storage of Controlled Drugs and, whilst not specific to waste medicines, should be referred to in these circumstances.

132

Public Health England South West Care Home Communications Protocol

Public Health England South West Centre works in partnership with local authorities, NHS and CCG colleagues to support care homes in managing outbreaks and deaths from COVID. Due to the high number of care home settings affected, PHE has agreed with the Directors of Public Health that local authority comms teams will lead on production of local materials, but look to PHE SW comms for support. It is more important than ever that we are consistent in our messaging and ensure that any materials shared publicly are in line with the latest national guidance on COVID.

This guide is designed to help comms colleagues in local authorities prepare reactive communications and understand how the process for investigating and tackling spread of infection is currently working.

Local authorities should also liaise with their CCG. This is particularly important for nursing homes, where many residents are likely to be NHS-funded and where comms should be developed jointly.

CCGs that commission the majority of places at an affected nursing home should become the lead for comms, working with local authorities. As such, this guidance is also designed for CCGs.

PHE has also developed a series of short webinars for care home staff on a number of key public health actions. These resources are available online and links are included in section 8 below.

Please note: All materials contained in this guide are for reactive use and should be checked regularly as national guidance around care home management (particularly testing and provision of PPE) may be updated.

Outbreak control team meetings and actions to manage infection control

In normal times PHE would host outbreak control team meetings (OCTs) bringing together local partners to manage outbreaks. In periods where there are multiple outbreaks of similar disease, such as now, PHE will host selected, high risk OCTs. Local Authority Public Health teams will be able to host OCTs if they feel this is necessary based on their local understanding of the context.

We would ask that if you pick up an issue locally via comms that is creating media interest, you let PHE comms know so we can support you in managing the situation. PHE comms will not know about all outbreaks in the coming weeks but we can find out more information for you from our health protection team (HPT) and provide template documents (see section 6 and 7 below).

How confirmed cases are notified and how deaths are managed in the community

The PHE SW comms team will endeavour to send to LA comms teams every update we receive from the HPT – these brief emails will contain information about the care home, number of residents and staff affected any actions in place etc. and also shared routinely with DPHs. These emails are sent for info only so do not require further action unless the situation escalates, or you are contacted by media about an outbreak. If you need more info please contact comms and we’ll ask the HPT for you.

We are finding that a small number of care homes are not notifying either PHE or the LA before media find out about an outbreak – in these cases we will work with you to manage the situation as best as we can. Our HPT can make contact with care home managers to get updates if this happens – but if your PH lead makes direct contact with the care home yourself, please let PHE know so we can record it on our systems.

APPENDIX 2

133

Media handling for LAs and advice for care homes on dealing with media approaches

If you are preparing a reactive media statement it is vitally important that you involve care home managers and / or the comms lead for an affected care home (if part of a larger care home provider) as well as PHE comms.

We have found that care home providers who work regionally or nationally tend to have their own comms teams – and that connection with PHE or the local authority is not automatically being made. If you know of an outbreak that is gathering media attention, please investigate whether this is the case and make contact with the agency or comms team, so we can ensure any statements prepared are shared with all partners involved.

Each time PHE speaks to a care home we will let them know that they do not need to speak to media. Ideally, they should have the in and out of hours contacts for the relevant local authority so they can refer any media approaches to a comms professional. If care homes have their own agency to deliver comms, then the agency should link up with the LA and PHE comms, as above.

Care homes should also be made aware that if media persist in contacting them, either in person, or via phone or email, then the best course of action is to look to the Police for support.

Guidance on how to refer to numbers affected and deaths in a care home setting

The media are inevitably interested in numbers of cases and deaths – however we know that these situations are quickly evolving, and that providing specific numbers is often more problematic than beneficial. We risk disclosing patient-identifiable information and the number of deaths reported by media may not be directly attributable to COVID-19.

We advise all partners to avoid including numbers for these reasons – and to refer to ‘a number of residents’ rather than specific numbers. In a situation where media are asserting that there are deaths from COVID, or reporting a high number of deaths, and we know this is not the case, numbers can be provided. However it is vital that this is done in line with the wishes of the families affected, via the care home manager or care home comms lead.

Data sources for numbers of cases and deaths

The PHE dashboard continues to show reported cases of coronavirus in the UK, and the two main sources of COVID-19 death data remain:

the daily DHSC COVID-19 deaths data, which is published for the UK at 2pm every day and is the most reliable for giving daily reporting for an immediate understanding of the pandemic

the ONS weekly death registrations data for England and Wales, which is released every Tuesday at 9:30am and relates to the week that ended 11 days prior

As of 160420 we have been informed that ONS will be providing breakdowns of deaths to a local authority level. At time of writing we have no further information but would expect that this will generate further media interest however there will be no further breakdown at present ie by setting.

Where to point media who have questions on PPE and testing

PHE is not leading on supply of PPE or provision of testing for NHS staff, symptomatic patients or others.

For any questions about PPE provision in the community or trusts, contact the SW NHS EI comms team on england.swcomms@nhs.net who can redirect your enquiry as appropriate.

134

For queries about testing provision, drive-through test centres or lab capacity, please direct media to the DHSC press office.

Draft reactive statement template for individual care home outbreaks or deaths

Please note: Before issuing this statement, you will need to agree content with PHE and the care home to ensure the correct information is included.

MEDIA STATEMENT: COVID-19 outbreak in XXXXXX Care Home

Public Health England South West and XXXXXX are working together with local NHS colleagues to support staff and residents of ENTER CARE HOME NAME in ENTER AREA following an outbreak of COVID in residents. [CAN BE INCLUDED IF NECESSARY WHEN REPORTING A DEATH] Sadly a number of residents have passed away.

The home is currently closed to visitors and staff have been given health advice about the symptoms of coronavirus. Staff will be closely monitoring residents and looking for symptoms such as fever, cough or difficulty breathing. If any symptoms are identified they will be referred for a clinical assessment.

Some staff and residents, who are deemed to have been close contacts of confirmed cases, are being tested. [LINE TO BE REVIEWED REGULARLY]

Dr XXX XXXXX, Consultant in Health Protection at Public Health England South West, said: “PHE South West is working closely with the care home to provide public health advice to stop the virus spreading.

“Everyone should be following social distancing advice to prevent the spread of the virus. Stay at Home; Protect the NHS, Save Lives.

“Good hygiene is the best prevention and there are some simple steps you can take to protect you and your family by washing your hands regularly and thoroughly and if you cough, cover your mouth and nose with a tissue.”

“After we’ve spoken to the care home initially we email out an information pack to support them with their infection prevention control with advice on what to do if they need additional support.”

xxxxxx Director of Public Health for XXXXX , said: “We are working with health colleagues to do everything we can to minimise the spread of the virus in ENTER AREA

“It is important that we protect our elderly and vulnerable in care homes, which is why we have issued extensive advice and guidelines to support them in managing suspected and confirmed cases of COVID-19.

“We all have a part to play in reducing the risk of infection and must continue to stay at home and only go outside for food, health reasons or work, but only if you cannot work from home.

“Good hand hygiene remains the best protection against the virus, including washing your hands more regularly with soap and water for at least 20 seconds and covering your mouth and nose with a tissue when you cough or sneeze.”

Ends

135

Notes to Editors

PHE and the NHS are well prepared to deal with coronavirus. Our priority is to safeguard local communities which sometimes involves taking preventative measures to help reduce the risk of further cases.

We cannot comment further on individual cases due to patient confidentiality.

For more information and advice on coronavirus (COVID-19)

PHE www.gov.uk/coronavirus

NHS https://www.nhs.uk/conditions/coronavirus-covid-19/

Template reactive statement on local public health support to care homes

“Local authorities have the lead role for protecting their local communities but work in partnership with PHE to manage outbreaks in care home settings.

“PHE has specialist Health Protection Teams serving every region in England and part of their role in the current response is to provide public health advice to support care homes dealing with coronavirus.

“When outbreaks of COVID-19 in care homes are suspected, PHE and the local authority work closely together on how to manage the outbreak, including issues such as PPE, infection prevention control, shielding and testing.

“Care homes that suspect two or more coronavirus cases among their residents or staff should report this to their local PHE Health Protection Team.

“In cases where a resident sadly passes away and COVID-19 is identified as a cause of death, we will not comment on deaths in care homes in order to protect the identity of individuals and respect the wishes of families.”

ENDS

Background

PHE will inform local authority partners and Clinical Commissioning Groups (CCGs) to ensure appropriate follow-up support to care homes.

In addition, care homes are receiving support from the NHS around plans for local support networks and care provision across the area, including identifying local capacity. They also support local authorities in planning around resilience, including plans to share resources locally in an outbreak of COVID-19. This should include workforce, including the deployment of volunteers where it is safe to do so. And in cases where there may be isolated outbreaks within certain providers, how best the NHS can support in recovery.

Local authorities, working with their Local Resilience Forums, are drawing on their pre-existing plans for pandemic influenza. This includes plans for mutual aid and close working with community health services.

The government and PHE has published guidance specifically for care homes covering: o https://www.gov.uk/government/publications/wuhan-novel-coronavirus-infection-prevention-and-control/covid-19-personal-protective-equipment-ppe

136

General guidance: https://www.gov.uk/government/publications/covid-19-residential-care-supported-living-and-home-care-guidance/covid-19-guidance-on-residential-care-provision#steps-the-nhs-can-take-to-support-care-homes

Admission and care of residents during a COVID-19 incident: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/878099/Admission_and_Care_of_Residents_during_COVID-19_Incident_in_a_Care_Home.pdf

Links to national guidance and care home webinars

The Coronavirus (COVID-19): adult social care action plan has now been published on gov.uk which outlines how the government will support the adult social care sector in England throughout the coronavirus outbreak https://www.gov.uk/government/publications/coronavirus-covid-19-adult-social-care-action-plan?utm_source=dfdae1be-7cc5-474f-a0de-4ec26695bdba&utm_medium=email&utm_campaign=govuk-notifications&utm_content=immediate

PHE SW has created a set of short webinar presentations for care home staff as follows:

Part 1 Introduction: What is COVID-19, Key guidance, Social distancing, Shielding and self-isolation and Recognising a case https://youtu.be/ShN2I0bhMo4

Part 2 Staff Protection and Wellbeing: Protecting staff health, Hand hygiene, Safe use of PPE, Obtaining PPE https://youtu.be/X-HDV0vP2P4

Part 3 Admissions and isolation Practices: Transmission based infection control precautions, New admissions, Managing isolation safely and Recognising and reporting an outbreak https://youtu.be/y6mxsheBURM

Part 4 Personal Protective Equipment: Putting on and removing PPE https://www.youtube.com/watch?v=-GncQ_ed-9w

137

Section 7:

End of Life Care Information for Residential Homes

(Where there is no registered nurse working)

138

End of Life Care Information

for Residential Care Homes (i.e. where there is no Registered nurse

working):

What to expect in the last few days of life.

This guidance relates to patients who have been identified as dying by a GP or registered

Health Care Professional and all treatment is aimed at comfort. If a resident is deteriorating and there is no plan in place for their treatment contact your GP or 111. This information describes some of the things that are likely to happen when someone is

dying or close to death. Everyone is an individual and can experience things differently;

hence the dying process is unique to every single person. Care should be individualised for

that person. You should ensure that the patient’s GP is consulted and updated about the

person’s condition; in particular if a GP has not reviewed the patient recently. The GP will

decide about medications that will be prescribed.

Please do remember that you can phone the advice line of your local Hospice on the numbers

below if you would like advice:

St Peter’s Hospice - 0117 9159430

Weston Hospice - 01934 423900

Coping with Dying

Each person is unique but in most cases we notice some characteristic changes that help us

to know that a person is dying. These fall into four main categories:

1) Less need for food and drink

2) Withdrawal from the world

3) Changes in breathing

4) Changes that happen just before death

1. Less need for food and drink

When someone is dying, their body no longer has the same need for food and drink as before. Their body slows down and cannot digest food so well or take up its goodness. The patient may want to eat or drink but try not to worry if they do not want very much.

Some people may not want to eat or drink at all in the last days of life and swallowing may become difficult as they become more unwell. Although their mouth may look dry, this is not

necessarily a sign that they are dehydrated. Gently moistening their mouth with a damp sponge and applying lip salve can give comfort.

139

2. Withdrawal from the world

For most, this usually happens gradually. The person spends more and more time asleep. When they are awake they are often drowsy and less able to show interest in what is going

on around them. This is a natural change, not usually caused by medication. This period often lasts several days but for some it can be longer or shorter. We are aware that people

who are dying from COVID-19 might die fairly quickly; hence this period can be short days.

It is important to remember that, even when the person is or appears to be sleeping or

resting, they may still be able to hear you. Do not feel that you need to stop communicating with the person.

The patient may find it comforting for someone to read to them or play some of their favourite music. Or they may prefer you simply to sit quietly with them. Try to do whatever

you think would give the person the most comfort. We encourage you to keep talking to them as they may well be able to hear you, even if they cannot respond.

3 Changes in breathing

A change in the breathing pattern is a normal part of the dying process. When someone is dying, the body becomes less active and their need for oxygen reduces. The knowledge that someone is close at hand can be a real help in preventing breathlessness caused by anxiety.

So, just sitting quietly and holding the person’s hand can make a difference. Medication can also be used to help relieve these feelings of breathlessness. Please discuss this with the

person’s GP.

Things that might help if someone is breathless:

o Opening a window or door can help keep the room cool. o Cooling the face by using a cool flannel or cloth can help.

o Portable fans are not recommended for use during outbreaks of infection

Occasionally in the last hours of life, breathing can become noisy. This is caused by secretions in the throat and upper chest, which may build up as someone becomes sleepier and less able to clear them. It may be helpful to change the person's position so that they are on their

side if they agree or do not seem too disturbed by being moved.

The doctor or district nurse may also suggest medication which may help to reduce the fluids

in their chest or throat. This is not always needed, and it does not always make a difference. The noisy breathing can sound alarming but this doesn’t usually distress the dying person.

In the very last moments of life, the person's breathing pattern may change. Breaths may become much slower and quieter before they stop altogether.

4. Changes that happen just before death

Some people may become restless or anxious as death gets near. If this is the case, District Nurses can assess as to whether medication to relieve this might help.

When death is very close (within minutes or hours), the patient’s breathing pattern may change. It can become rapid, shallow or with long pauses between breaths.

The patient’s skin may become pale, and moist and slightly cool.

140

Most people do not wake from sleep in the final moments of life but die peacefully and

comfortably. Breathing will usually gradually slow and then stop altogether. This may take a long time in some people and it can be difficult to pinpoint the exact moment of death.

Symptoms that might occur:

The GP and District nurse will usually organise ‘Just in Case’ (sometimes called ‘as required’) medications. These medications are prescribed to relieve symptoms and not change the course of the natural dying process. They are supplied in a variety of forms, for example:

injections, under the tongue (sublingual) or between the gum and the cheek (buccal). The following guidance is not related to administering these medications, but offers practical

advice in promoting comfort.

If medication has not been prescribed for a symptom please liaise with the patient’s GP. If it

has been prescribed please liaise with Sirona’s Single point of access (SPA) Tel: 0300 1256789, regarding administration of the prescribed injectable medication.

1. Pain: o People may experience pain due to existing illnesses and may also develop pain

as a result of excessive coughing or immobility. At the end of life they may grimace or groan to show this

o Not being able to pass urine can cause pain

o Check their position in the bed to see if this might help

2. Agitation/Distress:

o Some people may become agitated and confused towards the end of life. They may seem confused at times and then seem their normal selves at other times.

o People who become delirious may start behaving in ways that are unusual for them- they may become more agitated than normal or feel more sleepy and withdrawn.

o Pain may worsen agitation

o Not being able to pass urine may also worsen agitation

3. Nausea & Vomiting:

o Sometimes people may feel nauseated or sick when they are dying

o If they are vomiting and unable to sit up, turn the person on their side to protect their airway.

Symptoms related to suspected or confirmed COVID-19

1. Fever:

Fever is when a human’s body temperature goes above the normal range of 36-37° Centigrade.

Signs and symptoms of a fever: o shivering

o shaking o chills

141

o aching muscles + joints

o other body aches o may feel cold despite body temperature rising

Things that might help:

o Try a cool flannel applied across the face

o Reduce room temperature - open a window or door o Wear loose clothing

o Oral fluids if able to drink 2. Cough: Cough is a protective reflex response to airway irritation.

To minimise the risk of cross-transmission: o Cough Hygiene: cover the nose and mouth with a disposable tissue when

sneezing, coughing, wiping & blowing the nose

o dispose of used tissues promptly into clinical waste bin used for infectious or

contaminated waste Things that might help:

o humidify room air o oral fluids

o honey & lemon in warm water o elevate the head when sleeping

What happens after the person has died

Within the first few hours after death you will need to call the District Nurse or GP to come

and confirm the death. Once the GP or District Nurse has been you can contact a funeral

director. They can usually be contacted 24 hours a day.

The infection control precautions described in this document continue to apply whilst an

individual who has died remains in the care home. This is due to the ongoing risk of infectious

transmission via contact, although the risk is usually lower than for those living.

Please find further guidance from Public Health England about the care of the deceased with

suspected or confirmed coronavirus (COVID-19) here:

https://www.gov.uk/government/publications/covid-19-guidance-for-care-of-the-

deceased/guidance-for-care-of-the-deceased-with-suspected-or-confirmed-coronavirus-covid-

19

142

Section 8:

End of Life Care Information for Nursing Homes

(This is for a registered nurse)

143

End of Life Care Information

for Nursing Homes (This is for a Registered Nurse):

What to expect in the last few days of life.

This guidance relates to patients who have been identified as dying by a GP or registered Health Care Professional and all treatment is aimed at comfort. If a resident is deteriorating

and there is no plan in place for their treatment contact your GP or 111. This information describes some of the things that are likely to happen when someone is

dying or close to death. Everyone is an individual and can experience things differently; hence the dying process is unique to every single person. Care should be individualised for that person. You should ensure that the patient’s GP is consulted and updated about the

person’s condition; in particular if a GP has not reviewed the patient recently. The GP will decide about which medications are to be prescribed. NB: This guidance does not provide

information about specific medication. This can be found on separate BNSSG guidance. Please do remember that you can phone the advice line of your local Hospice on the numbers

below if you would like advice:

St Peter’s Hospice - 0117 9159430

Weston Hospice - 01934 423900

Discussion about Care Plans:

Conversations about preferences and priorities, including advance decisions to refuse

treatment, are part of advance care planning for anybody who has a progressive life-limiting illness. In the context of people who have severe COVID-19 disease, honest conversations about preferred place of care, goals of care and treatment escalation planning should be

initiated as early as is practicable so that a personalised care plan can be documented and revised as the situation changes. Families and carers should be involved in these discussions

as far as possible and in line with the person’s wishes.

In the context of COVID-19, the person is likely to have become ill and deteriorate quickly, so

the opportunity for discussion may be limited or lost. Families and carers may be shocked by the suddenness of these developments and may themselves be ill or required to self-isolate. As far as possible it remains important to offer these conversations. Equally, it is a person’s

right to not be forced to have these conversations. Being kept informed helps to reduce anxiety, even in highly uncertain situations and even if the conversations need to be

conducted behind PPE or, by telephone or video consult.

In Bristol, North Somerset and South Gloucestershire these plans are usually documented on

a ResPECT form (Recommended Summary Plan for Emergency Care and Treatment). Ideally a GP will complete a form electronically and print off a paper ReSPECT form for the Nursing

Home. The GP can then share the plan through our Electronic Palliative Care Coordination system and it can be viewed in a system called Connecting Care by out of hours doctors, hospitals, hospices and ambulance services. For further information regarding ReSPECT form:

https://remedy.bnssgccg.nhs.uk/adults/end-of-life-care-and-hospice/respect/

144

(Adapted from: COVID-19 and Palliative, End of Life and Bereavement Care in Secondary Care. Role of the specialty and

guidance to aid care. NHS Northern Care Alliance NHS Group. Association of Palliative Medicine of Great Britain & Ireland. V3.

6/4/20).

Coping with Dying

Each person is unique but in most cases we notice some characteristic changes that help us

to know that a person is dying. These fall into four main categories:

1) Less need for food and drink

2) Withdrawal from the world

3) Changes in breathing

4) Changes that happen just before death

1. Less need for food and drink

When someone is dying, their body no longer has the same need for food and drink as before. Their body slows down and cannot digest food so well or take up its goodness. The patient may want to eat or drink but try not to worry if they do not want very much.

Some people may not want to eat or drink at all in the last days of life and swallowing may

become difficult as they become more unwell. Although their mouth may look dry, this is not necessarily a sign that they are dehydrated. Gently moistening their mouth with a damp sponge and applying lip salve can give comfort.

2. Withdrawal from the world

For most, this usually happens gradually. The person spends more and more time asleep. When they are awake they are often drowsy and less able to show interest in what is going

on around them. This is a natural change, not usually caused by medication. This period often lasts several days but for some it can be longer or shorter. We are aware that people who are dying from COVID-19 might die fairly quickly; hence this period can be short days.

It is important to remember that, even when the person is or appears to be sleeping or

resting, they may still be able to hear you. Do not feel that you need to stop communicating with the person.

The patient may find it comforting for someone to read to them or play some of their favourite music. Or they may prefer someone to sit quietly with them. Try to do whatever you

think would give the person the most comfort. We encourage you to keep talking to them as they may well be able to hear you, even if they cannot respond.

3. Changes in breathing

A change in the breathing pattern is a normal part of the dying process. When someone is dying, the body becomes less active and their need for oxygen reduces. The knowledge that someone is close at hand can be a real help in preventing breathlessness caused by anxiety.

So, just sitting quietly and holding the person’s hand can make a difference. Medication can also be used to help relieve these feelings of breathlessness. Please discuss this with the

person’s GP.

Things that might help if someone is breathless:

145

Opening a window or door can help keep the room cool.

Cooling the face by using a cool flannel or cloth can help.

Portable fans are not recommended for use during outbreaks of infection

Occasionally in the last hours of life, breathing can become noisy. This is caused by secretions in the throat and upper chest, which may build up as someone becomes sleepier and less

able to clear them. It may be helpful to change the person's position so that they are on their side if they agree or do not seem too disturbed by being moved.

The GP may also suggest medication which may help to reduce the fluids in their chest or throat. This is not always needed, and it does not always make a difference. The noisy

breathing can sound alarming but this doesn’t usually distress the dying person.

In the very last moments of life, the person's breathing pattern may change. Breaths may

become much slower and quieter before they stop altogether.

4. Changes that happen just before death

When death is very close (within minutes or hours), the patient’s breathing pattern may

change. It can become rapid, shallow or with long pauses between breaths.

The patient’s skin may become pale, and moist and slightly cool.

Most people do not wake from sleep in the final moments of life but die peacefully and comfortably. Breathing will usually gradually slow and then stop altogether. This may take a

long time in some people and it can be difficult to pinpoint the exact moment of death.

Symptoms that might occur:

Please liaise with the patient’s GP regarding ‘Just in Case’ (sometimes called ‘as required’)

medications. The aim of these medications is to relieve symptoms and not change the natural course of the dying process. They are supplied in a variety of forms, for example: injections,

under the tongue (sublingual) or between the gum and cheek (buccal). If medication has not been prescribed for a symptom please liaise with the patient’s GP. If a medication is

prescribed, the symptom is causing distress and you have assessed that medication is required please administer following the prescribed instructions.

1. Pain: o People may experience pain due to existing illnesses and may also develop pain

as a result of excessive coughing or immobility. At the end of life they may grimace or groan to show this

o Not being able to pass urine can cause pain

o Check their position in the bed to see if this might help

2. Agitation/Distress:

o Some people may become agitated and confused towards the end of life. They may seem confused at times and then seem their normal selves at other times.

o People who become delirious may start behaving in ways that are unusual for

them- they may become more agitated than normal or feel more sleepy and withdrawn.

146

o Pain may worsen agitation

o Not being able to pass urine may also worsen agitation

3. Nausea & Vomiting:

o Sometimes people may feel nauseated or sick when they are dying

o If they are vomiting and unable to sit up, turn the person on their side to protect their airway.

Symptoms related to suspected or confirmed COVID-19

3. Fever: Fever is when a human’s body temperature goes above the normal range of 36-37°

Centigrade.

Signs and symptoms of a fever: o shivering

o shaking o chills

o aching muscles + joints o other body aches o may feel cold despite body temperature rising

Things that might help:

o Try a cool flannel applied across the face o Reduce room temperature - open a window or door

o Wear loose clothing o Oral fluids if able to drink

4. Cough:

Cough is a protective reflex response to airway irritation. To minimise the risk of cross-transmission:

o Cough Hygiene: cover the nose and mouth with a disposable tissue when sneezing, coughing, wiping & blowing the nose

o dispose of used tissues promptly into clinical waste bin used for infectious or

contaminated waste

Things that might help: o humidify room air o oral fluids

o honey & lemon in warm water o elevate the head when sleeping

This symptom information has been adapted from:

1) NICE. COVID-19 rapid guideline: Managing symptoms (including at the end of life) in the community.

NG163. Published 3/4/20

2) COVID-19 and Palliative, End of Life and Bereavement Care in Secondary Care. Role of the specialty and

guidance to aid care. NHS Northern Care Alliance NHS Group. Association of Palliative Medicine of Great

Britain & Ireland. V3. 6/4/20

147

3) What happens after the person has died

Within the first few hours after death you will need to call the GP to come and confirm the

death. Once the GP has been you can contact a funeral director. They can usually be

contacted 24 hours a day.

The infection control precautions described in this document continue to apply whilst an

individual who has died remains in the care home. This is due to the ongoing risk of infectious

transmission via contact, although the risk is usually lower than for those living.

Please find further guidance from Public Health England about the care of the deceased with

suspected or confirmed coronavirus (COVID-19) here:

https://www.gov.uk/government/publications/covid-19-guidance-for-care-of-the-

deceased/guidance-for-care-of-the-deceased-with-suspected-or-confirmed-coronavirus-covid-

19