COVID-19 primary care guide to decision making around escalation priorities, advance care planning, palliation

and end of life

16th April 2020

The aim of this is a guide is to support GPs with advance care planning prior to COVID-19 infection. It also considers when to convey to hospital those patients who do not have a Coordinate My Care (CMC) plan in place but have a history that put then in the high-risk group with a degree of frailty.

Contents

1. Support for decision making around escalation of treatment……………………………………..page 2-5

2. Care Planning………………………………………………………………………………………………………………page 6-7

3. Top tips for completing CMC……………………………………………………………………………………….page 8

4. End of Life pathway and practical support to GPs……………………………………………………….page 9-12

a. CMC Support: Accessing, training and helpline……………………………………………………………page 13

b. Suggested script for GPs for ACP/CMC………………………………………………………………………..page 14

c. City and Hackney EoL services during Covid 19………………………………………………………………page 15

5. Symptom control in the last days of life during COVID-19 pandemic………………………….page 16-17

6. Anticipatory injections: prescribing advice for the community…………………………………..page 18-21

7. What you can do to practically care for someone who is in their last days and

hours of life……………………………………………………………………………………………………………….page 22-23

8. Death Verification, certification and cremation forms……………………………………………….page 24-29

9. Death registration……………………………………………………………………………………………………..page 30

10. Information and advice on funerals during COVID-19 pandemic………………………………..page 31-32

11. Signposting to bereavement support…………………………………………………………………………page 33-34

Support for decision making around escalation of treatment Primary care clinicians should take an individualised and shared decision-making approach to the patient and those important to them about potential benefits of hospital admission vs care at home. Those considered to be at increased risk from severe illness from COVID-19 include:

• anyone aged 70 or over • aged under 70 with an underlying health condition (instructed to get the flu jab) • people who have been identified of at very high risk

Barnet CCG have produced a detailed COVID-19 pathway and some of the information in this guidance has been included in this City & Hackney guide.

Experience in other countries, such as Italy during the COVID-19 virus pandemic, has shown that outcomes are generally very poor in frail elderly patients with severe coronavirus illness. These outcomes make it a priority to have shared decisions with individual patients. This includes discussions around the benefits of escalation of care in hospital and the benefit of symptom relief for people who remain at home who may still recover but remain at risk of dying. Older people should receive similar treatment to that of all ages in the community. Offer an oral antibiotic for treatment of pneumonia in COVID-19 in people who can or wish to be treated in the community if:

• The likely cause is bacterial (becomes rapidly unwell after only a few days of symptoms, does not have a history of typical COVID-19 symptoms, has pleuritic pain and/or has purulent sputum).

• It is unclear whether the cause is bacterial or viral and symptoms are more concerning • Or they are at high risk of complications because, for example:

o They are older or frail o Have a pre-existing comorbidity such as:

Immunosuppression or Significant heart or lung disease (for example bronchiectasis or COPD),

Have a history of severe illness following previous lung infection. 4.8 When starting antibiotic treatment, the first-choice oral antibiotic is: doxycycline 200 mg on the first day, then 100 mg once a day for 5 days in total (not in pregnancy), alternative: amoxicillin 500 mg 3 times a day for 5 days. Do not routinely use dual antibiotics. For choice of antibiotics in penicillin allergy, pregnancy and more severe disease, or if atypical pathogens are likely, see the recommendations on choice of antibiotic in the NICE antimicrobial prescribing guideline on community acquired pneumonia. Source: COVID-19 rapid guideline: managing suspected or confirmed pneumonia in adults in the community https://www.nice.org.uk/guidance/ng165 In parallel with primary care focusing on elderly frail patients, for whom updated Advance Care Plans (ACPs) are a priority, acute care is focusing on supportive care for the same patient group. All acute hospitals are focussed on providing ventilatory support for those seriously ill patients with COVID-19 that have the functional reserve to benefit from this prolonged form of invasive treatment. Those patients whose functional reserve is poor are not going to be escalated to this form of treatment

as they are unlikely to survive. However, the focus in all hospitals will be to provide supportive care and if they deteriorate, they will be offered symptom control until they die.

The Clinical Frailty Scale (CFS) is a predictor of poor outcomes in urgent care (not COVID-19 specific) and can support escalation decision making. NB: it should be completed in relation to the patient’s capabilities two weeks prior (i.e. not their current picture) and can be used to help decisions in escalation in people <65 years old but should be used with caution. The CFS should not be used with stable long-term disabilities (e.g. cerebral palsy), learning disabilities or with autism. CFS is being used in COVID 19 setting following consensus guidance from the British Geriatric Society (BGS) advises to use it as a guide for those who would not benefit from escalation of treatment so secondary and primary care are adopting it to help guide escalation decisions. Homerton Hospital and community teams are currently using the CFS* (see diagram below) as an evidence-based tool to aid the decision-making process regarding escalation of care and so it would be useful if GPs familiarise themselves with this score to aid their assessments of patients and discussions with hospital admitting teams.

The combination of the very restricted visiting policy in all hospitals, the physical environment being cared for by people in full PPE and potential for rapid decline in COVID 19 means we should be encouraging home treatment where possible for continued healthcare and if needed palliation.

• Patients with a CFS of greater than 5 are unlikely to benefit from hospital admission for

ventilatory support • Patients with a CFS of greater than 5 would be offered supportive and palliative care which

could be provided at home • Those patients with a CFS ≤ 5 may be appropriate for escalation for ventilatory support and

follow the guidance on considering conveyance to hospital

In difficult decisions around escalation of care GPs are encouraged to have a peer discussion with another GP colleague in the practice or PCN before calling the geriatrician rapid access phone for a second opinion.

Rapid access phone carried by a geriatrician Consultant – Monday - Friday 9:00am – 5:00pm on 07766 703 203.

General advice from the palliative team is available 24/7 on how to manage: pain, nausea, vomiting and restlessness, distressed family members and queries around referrals to the hospice. St Joseph’s 24/7 advice and support line: 0300 30 30 400.

COVID-19 not for transfer script as per the diagram above:

In the Coronavirus Pandemic this patient would be likely to have a poor outcome with COVID 19 infection and would not be considered for escalation for ventilation in hospital as they would be unlikely to survive if

they became seriously ill hence will benefit from symptom control and care at home.

Care Planning

Conversations and documentation noting ceilings of care will be critical to ensure that inappropriate conveyancing to hospital does not occur, and that hospitals remain able to support those who have a high probability of surviving and maintaining a good quality of life after receiving critical care support.

Homerton have developed some videos that can help open up CMC COVID-19 ACP conversations:

1. Support for GP (or other health professional) with discussions with patient in their home will be made to their care and reflected in CMC in the event they contract COVID 19.

This video supports discussions with patients who retain mental capacity to take their own health decisions but in those with Patients with Dementia who are unable to retain information relevant to the COVID-19 and health care then discussions should be undertaken with Next of kin, Lasting Power of Attorney or family.

2. Support for GPs having discussions with Next of kin/family regarding changes to the care of their

elderly relative in a Home.

3. Information video for Matrons and care staff in LBH homes: The priorities of looking after elderly frail patients with COVID 19 approaching end of life.

All three videos can be found on the following link: https://gps.cityandhackneyccg.nhs.uk/coronavirus-covid-19/end-of-life/end-of-life-guidance

There is work underway at a national and local level to help identify who would benefit most from a care plan. We will issue further guidance in due course but please commence updating care plans for your vulnerable/at risk/frail patient cohorts.

Permissions around who can update and create CMC plans have been relaxed in recognition that there is a significant workload to update/create all the necessary plans at pace. The following teams now can support with editing and creating plans and will be provided with training and support from the Homerton as well as instruction on how to contact the GP practice if they have concerns:

• GPs working in out of hours settings including primary care COVID treatment centres • Paradoc GPs • Geriatrician Consultants

Medical on call consultants and ED Consultants will review CMC documentation as part of escalation planning in hospital. GPs will be familiar with the phrase below that appears on Homerton discharge summaries that reflect discussions that have occurred around what active medical treatments would be offered in hospital if deterioration occurred: During this hospital admission the possibility of serious deterioration in the patient's condition was considered, including end-of-life scenarios. It was decided what active medical treatment would be given. Despite treatment if deterioration continued then tracheal intubation and ventilation, or cardiac resuscitation should not be undertaken. It may be appropriate to continue advance care planning after discharge.

When this phrase is seen on Homerton Hospital discharge summary GPs should consider progressing CMC discussions at the earliest opportunity. The GP that the patient is currently registered with will remain the holder of the CMC plan, when an acute clinician, OOH/COVID treatment centre/Paradoc GP approves the plan they must leave the patients GP in the box as the next reviewer (or choose the patients GP as the next reviewer), this means that the GP will receive all future correspondence from CMC when the plan needs a future review. Once the patient’s GP has been chosen as the reviewer click the Approve button at the bottom of the Approval screen and you will get a ‘pop-up’ confirmation that you have successfully approved and published the care plan.

From this point onwards, the care plan can be viewed by the Urgent Care Services and has become live or ‘published’.

(It is good practice where possible to let the GP know that you have updated the CMC plan in the D/C summary or in other correspondence regarding the patient.)

Care Home Considerations: Many care home residents are particularly vulnerable to COVID-19 due to complex medical problems and advanced frailty. Primary care can work with care homes to ensure that any advance care planning conversations are completed and where possible documented on CMC. Video conferencing with care homes should be used where possible. COVID-19 in care home residents may commonly present with non-respiratory tract symptoms, such as new onset/ worsening confusion, delirium, slowing of baseline function or diarrhoea. Residents with cognitive impairment who ‘walk with purpose’ require specific consideration with regards to isolation. Physical restraint should not be used. A behavioural/psychosocial approach should be used to understand the behaviour and try to modify it where possible. These residents may need additional treatment as they approach the end of life. There is work underway in City & Hackney to prioritise those living in Residential, Nursing and SLS homes to support GP teams and care home workers looking after these patients to publish care plans. The aim is that Geriatricians, community matrons, allied health professionals will be supporting GP Practice teams with caring for this priority group. Support for GPs caring for care home residents is being coordinated involving community nursing teams, clinical nurse specialists and allied health professionals. Resource: British Geriatric Society Care Home COVID-19 Guidance https://www.bgs.org.uk/resources/covid-19-managing-the-covid-19-pandemic-in-care-homes

Top tips for completing CMC

1. Ensure you have the admission criteria at hand when commencing ACP:

• Patients with a CFS of greater than 5 are unlikely to benefit from hospital admission for ventilatory support

• Patients with a CFS of greater than 5 would be offered supportive and palliative care which could be provided at home

• Those patients with a CFS ≤ 5 may be appropriate for escalation for ventilatory support and follow the guidance on conveyance to hospital

• The combination of the very restricted visiting policy in all hospitals, the physical environment being cared for by people in full PPE and potential for rapid decline in COVID 19, we should be encouraging home treatment for palliation where possible

2. If your patient chooses to have all care at home (no escalation) or is likely to have a poor

outcome: please add the phrase below to the CMC care plan, please ensure it appears in the emergency treatment plan section AND the DNACPR: section. This will make sure that all agencies can view this information.

In the Coronavirus Pandemic this patient would be likely to have a poor outcome with COVID 19 infection and would not be considered for escalation for ventilation in hospital as they would be

unlikely to survive if they became seriously ill hence will benefit from symptom control and care at home

3. Ascertain and document if they live alone or don’t have consistent/reliable care support. If

you have concerns that there is a gap in their care needs that needs addressing immediately then they should be referred for urgent review for immediate care services though the duty desk at LBH or if at end of life through the single point of access at the Integrated Independence Team (IIT) for urgent immediate services.

End of Life pathway and practical support to GPs We have included a variety of practical aids for you to use as well as information and redesigned EoL pathway for reference.

Current COVID-19 End of Life Pathway in the Community Our aspiration is to provide patients approaching the end of life with COVID-19 quick access to end of life medications at home.

Please note that this is an early draft under active discussion with stakeholders.

The groups this COVID-19 end of life pathway applies to are: • In-hours GP practices • OOH visiting GPs • Paradoc GPs • COVID Treatment Centres based in primary care • Hub visiting service once operational from COVID Treatment Centre

It is anticipated that End of Life (EoL) services are likely to be working at or beyond capacity at the peak of the COVID-19 pandemic, and that alternative arrangements are likely to be required to enable patients to die in a dignified manner at home. For non COVID-19r palliative care patients, standard referral processes continue to apply (https://gps.cityandhackneyccg.nhs.uk/pathways/community-end-of-life-care)

Outline of general palliative care referral pathway:

1. GP assesses patient and identifies imminent/active dying 2. Prescription for EoL drugs by GP, to be collected or delivered to patient by pharmacy 3. Discussion with St Joseph’s advice line if needed 4. Completion of drug chart for EoL medications, the chart can be found here:

• https://www.stjh.org.uk/education/for-health-professionals 5. Referral to district nurses for ongoing EoL drugs and care support 6. Referral to IIT if appropriate 7. Marie Curie referral if it is felt support is necessary

As patients decline and lose the ability to eat/drink as part of approaching end of life then apart from prescribing end of life symptoms relief/ anticipatory please also withdraw all non-essential medications (e.g. primary and secondary preventions drugs).

Proposed COVID-19 EoL pathway:

This pathway is for utilisation in patients who are suspected to be dying of COVID-19. In all these situations breathlessness should be the priority of care. All the other symptoms are as per COVID-19 advice from St. Joseph’s and St. Francis’s Hospice (see below).

Oxygen treatment plays no part in managing patients who are approaching the end of their lives with severe COVID-19 infection as it has not been shown to alter the inevitable outcome and for whom effective symptomatic care should follow end of life COVID-19 medication guideline. However, some patients may deteriorate and die with other conditions for whom referral to usual EOLC pathway may warrant support with oxygen. The exception will be those with established hypoxia due to chronic respiratory failure, who can

continue to have their oxygen concentrator deliver oxygen at a level that maintains their usual oxygen saturations.

The NICE guidance on managing breathlessness may also be of use to clinicians managing end of life care in the community setting https://www.nice.org.uk/guidance/ng163/chapter/6-Managing-breathlessness

As part of the pathway please create or update CMC records to convey palliative approach being adopted.

Scenario A: Patient is not suitable to be conveyed to hospital and requires immediate palliation, and has family in attendance

1. Doctor to administer a stat dose of morphine, lorazepam and an antiemetic – oral medications should be used first line where appropriate and sublingual/buccal medications where the patient is deemed not to be able to swallow safely by the GP. (See the symptom control in last days of life table below for more details).

2. Where able, the family members are trained by the attending GP to deliver subsequent dosing and care as needed for up to 48 hours while awaiting further palliative care support.

3. Prescription for EoL drugs to be issued by GP, to be collected or delivered to patient by pharmacy. 4. Amber referral (72hours timeframe for response) made to Community Nurses +/- Marie Curie. 5. Advice from St Joseph’s Hospice as needed. 6. Remote support available via own GP Practice.

Scenario B: Patient is not suitable to be conveyed to hospital but lives alone

1. Doctor to administer a stat dose of morphine, lorazepam and an antiemetic - oral medications should be used first line where appropriate and sublingual/buccal medications where the patient is deemed not to be able to swallow safely by the GP. (See the symptom control in last days of life table below for more details)

2. Discussion with St Joseph’s hospice about bed availability for admission for palliative care • St Joseph’s Hospice to assist with Marie Curie rapid referral where appropriate

3. If not appropriate to admit to St. Joseph’s or no beds available, red priority referral by telephone (24 hours response time) to Community Nurses and/or urgent telephone referral to IIT single point of access.

4. If plan put in place through St. Joseph’s/Community Nursing/IIT teams then prescription for EoL drugs by GP, to be collected or delivered to patient by pharmacy

5. If symptoms uncontrolled and above fails convey to hospital for palliative care.

Scenario C: Patient is not suitable to be conveyed to hospital, has family in attendance, but they are unable to administer medication or provide care

1. Doctor to administer a stat dose of morphine, lorazepam and an antiemetic - oral medications should be used first line where appropriate and sublingual/buccal medications where the patient is deemed not to be able to swallow safely by the GP. (See the symptom control in last days of life table below for more details)

2. Red priority referral by telephone (24 hours response time) to Marie Curie, community nursing teams and/or urgent telephone referral to IIT single point of access. These teams will both administer palliative treatment but also support families to administer treatments.

3. If plan put in place through Community Nursing/IIT teams then prescription for EoL drugs by GP, to be collected or delivered to patient by pharmacy

In any of the above scenarios, as the patient declines and loses the ability to eat/drink as part of approaching end of life then apart from prescribing end of life symptom relief/ anticipatory medication please also withdraw all non-essential medications ( e.g. primary and secondary preventions drugs).

How to access supplies of EOL medications:

1. First line - prescriptions written by prescribers, dispensed from the 10 designated community

pharmacies (CP). In hours is by direct access ideally with prescriptions sent electronically to the community pharmacy. Out of hours 0845 299 3471. There is transport support for this service to support movement of prescription/medicines for both in and out of hours

2. Second line – supplies carried by primary care COVID-19 treatment centres/home visiting services for immediate administration of doses to patients - this is for patients where the prescriber wants to provide immediate symptomatic relief

3. Third line - labelled prepacks which can be left by the hot hubs/home visiting services for immediate symptomatic relief covering the next 24 - 72 hours; for when accessing medicines from the CP is not appropriate (these currently are on order).

Currently not recommending anticipatory prescribing (apart from very short-term care planning) or end of life packs. Putting medicines into patient’s homes in advance of when they might be needed is too much of a drain in the supply chain. Main constraints about accessing these medicines include:

1. Adherence to regulations controlling the supply of medicines particularly re Controlled Drugs – we are expecting some level of amendment to the law but currently ALL THE USUAL CD REQUIREMENTS STILL APPLY

2. Availability of EOLC medicines – large increase in demand and already some reported shortages. CHOICES OF MEDICINES WILL CHANGE AS STOCK BECOMES UNAVAILABLE. Lots of options included in the St Jos symptom control guidance

Community pharmacies that can supply EOL medications:

Community Pharmacy Opening hours Haggerston Pharmacy

228 Haggerston Road, E8 4HT 0207 249 2441

Monday - Friday 9am - 6.15pm Saturday Closed Sunday Closed

Devs Pharmacy 103A Dalston Lane

E8 1NH 020 7249 8060Monday - Friday 9am - 7pm Saturday 9am - 2pm Sunday

ClosedKingsland Pharmacy406 Kingsland Road

E8 4AA 020 7254 6910Monday - Friday 9am - 7pm Saturday 9am - 6pm

Sunday ClosedUnipharm Pharmacy253 Kingsland Road

E2 8AN 020 7613 4176Monday - Friday 9am - 7pm Saturday Closed

Sunday ClosedSpring Pharmcy

233 Hoxton StreetN1 5LG

020 7739 7482

Monday - Friday 9am - 6pm Saturday 9am - 5.30pm

Sunday Closed Park Chemist

286 Seven Sisters Road N4 2AA 020 8800 0786

Monday - Friday 9am - 7pm Saturday 9.30am - 5.30pm

Sunday Closed Armstrong Dispensing Chemist

279 Green Lanes N4 2EX 020 8800 4546

Monday - Friday 9am - 7pm Saturday 9am - 6pm

Sunday Closed Regal Pharmacy

48-50 Chatsworth Road, Upper Clapton , London, E5 0LP 020 89852536

Monday - Friday 9am - 7pm Saturday 9am - 6pm

Sunday Closed Bee's Pharmacy 261 Wick Road

E9 5DG 020 8985 5265

Mon, Tue, Wed & Fri 9am - 6.30pm Thursday 9am - 2 pm

Saturday 9am - 1 pm Sunday Closed

F A Strange 185 Lower Clapton Road

E5 8EQ 0208 510 0829

Mon, Tue, Wed & Fri 9am - 7pm Thursday 9am - 6pm Saturday 9am - 6pm

Sunday Closed

CMC Support: Accessing, training and helpline Accessing CMC

All GP’s should have access to CMC, if you do not setting up a new user’s log-in to CMC usually takes 2 days via: https://www.coordinatemycare.co.uk/joining-cmc/ Forgotten passwords can be reset using the automated process: https://nww.coordinatemycare.net/csp/healthshare/hscc/compat/login.html CMC Training

• The CMC system is intuitive. Select “training waiver” if you feel you have the competence to create an advance care plan and don’t require additional training. Ticking the “training waiver” box will prevent delay with issue of a log-in.

• Full training is available online, via webinar and quick reference guide. There is also a 5 minute video explaining the basics. https://www.coordinatemycare.co.uk/for-healthcare-professionals/training/

How to publish/approve a CMC plan someone else has created on your behalf

CMC Help

• The CMC helpdesk can be contacted on 02078118513 Mon – Fri: 9am – 5pm. At this busy time, CMC clinical trainers are on hand to discuss any clinical or technical questions.

• If you’re not used to creating CMC plans or having difficult conversations, contact your local Specialist Palliative Care services or McMillan GP lead for advice.

Good to know:

• EMIS and Vision and configured TPP SystmOne records have a CMC flag that notifies clinicians if a person has a CMC plan. The flag is also a hyperlink to that person’s CMC plan.

• A number of Cerner systems and Health Information Exchanges have a CMC flag.

Suggested script for GPs for ACP/CMC The suggested script below was provided as part of the Covid 19 resource pack for EOL by NHSE/I on the 21st of March 2020.

Introduction ‘Hello my name is…’

Make sure talking to the right person

Ensure they can clearly hear and understand you

I know it must be very hard at the moment with all the endless news reports saying don’t worry this only affects the elderly and frail with underlying health issues. I can imagine it makes you feel quite vulnerable.

Just wanted to let you know we are here and working at the practice and that if you have any concerns or symptoms you can call us.

We are also aware that a lot of our patients are too worried to bother us in case we are too busy so I just wanted to touch base and make sure you are ok. Is there anything worrying you at the moment or that you would like to ask me?

It would also be a really good time to make sure we have all your contact and next of kin details up to date – can we check these please?

What support if any do you have at the moment? Do you have carers coming in, someone to do shopping/get any medications or things you might need during an extended time of staying at home?

We really are living through an unprecedented time, and we know for some people it makes them start thinking about what they want and what they do not want when it comes to medical treatment. I am sorry to bring this up over the phone like this and if you prefer not to talk about it, that is completely fine. However, if you feel you would like to talk about it, or let me know what those wishes are, so that everyone involved in looking after you knows and is aware what your wishes are, then I would be very happy to discuss that now or another time soon if that is better for you.

Conversation about patient’s wishes: If the GP feels confident then they should be more explicit about the types of decision they want from the patient. Hospital vs care at home if they were seriously unwell with COVID-19. And to inform them that they should not be for resuscitation if the GP feels that this is medically appropriate.

There is a digital system that we have been using across GPs, the ambulance service and the hospitals to share this important information about our patients so we can share information about your medical history and ensure your next of kin details are known by everyone, would you be happy for me to create a record for you on this system, called ‘Coordinate My Care’?

We will be in regular contact to check on you but please do call us on XXX Or the out of hours service 111 or if it is an emergency call 999