richard chye - st vincents hospital - a clinicians perspective on palliative and end of life care

A Clinician’s Perspective on

Palliative and End-of-Life Care

Assoc Prof Richard Chye

Director, Sacred Heart Supportive & Palliative Care

St Vincent’s Hospital, Sydney

• An early shift - Improving palliative care

and enabling people with chronic illness to

get the best out of the time they have left

• Changing the focus - Doctors taking some

responsibility and knowing the right time to

let someone go

• Home based palliative care - How can we

achieve this for more patients?

Improving Palliative Care

Palliative Care has to change with a

changing health landscape

– People are living longer with illness

– People are living longer with disability

– Cancer is a chronic illness

– Treatment IS prolonging life

– Treatment IS more tolerable

Ms A.K.

• 56 year old lady

separated

living by herself

librarian

Ms A.K.

• Locally advanced large rectal cancer which

was initially unresectable

• Received neoadjuvant chemo-irradiation

– to reduce the size of the tumour before

surgical resection

• An attempt at cure!!

Ms A.K.

Locally advanced large rectal cancer which

was initially unresectable

Received neoadjuvant chemo-irradiation

to reduce the size of the tumour before

surgical resection

An attempt at cure!!............

………but probably 20 to 40% chance of cure

Ms A.K.

An attempt at cure!!............

………but probably 20 to 40% chance of cure

...or a 60 to 80% chance of dying from disease

Ms A.K.Developed many symptoms including

• local rectal pain

• diarrhoea

• pain on defaecation

• anorexia

• nausea

• difficulty drinking

• dehydration

• lethargy

Ms A.K.

• Really needed admission

Ms A.K.

Really needed admission

– But not sick enough for acute hospital

admission

– Not a palliative care patient, therefore not

for hospice admission, or support from

community palliative care service

Traditional Palliative Care

Active TreatmentTerminal

Care

Contemporary Palliative Care

Symptom control is provided throughout

the later stages of the illness, but

becoming increasingly involved in the

terminal phase.

Active Treatment

Palliative Care

Contemporary Anticancer

Treatment

Anticancer treatments are becoming more tolerable

more orally administered chemotherapy

less side effects from modern chemotherapy

better drugs to control side effects

Palliative Care

Active Treatment

Contemporary Anticancer

Treatment

Palliative anticancer treatments are being

given later in the trajectory of disease,

closer to death.

Palliative Care

Active Treatment

Contemporary Anticancer

Treatment

However, more combinations of anticancer

treatments are being promoted

Palliative Care

Active Treatment

Contemporary Palliative Care

Palliative care has promoted and encouraged

earlier referral

Oncologists recognise community support for

their patients keeps them out of hospitals

Active Treatment

Palliative Care

Contemporary Palliative Care

Symptom control is provided throughout

the later stages of the illness, but

becoming increasingly involved in the

terminal phase.

Active Treatment

Palliative Care

Contemporary Palliative Care

Increasing the interface between

“Active Treatment” and “Palliative Care”

Active Treatment

Palliative Care

0%

10%

20%

30%

40%

50%

60%

1999 2000 2001 2002 2003 2004 2005 2006 2007 2008

Hospices

Hospitals

"Home"

Place of Death of Patients Known to Palliative Care

Services in South East Sydney (Excluding Calvary

Hospital and Illawarra)

Because more patients are being treated

closer to their death….

…..palliative care more than ever needs

to be part of acute hospital care

Contemporary Palliative Care

Increasing the interface between

“Active Treatment” and “Palliative Care”

Active Treatment

Palliative Care

Specialist Palliative Care

Palliative Care

Palliative

Approach

Specialist

Palliative Care

Specialist

Palliative

Care

Palliative

Care

Supportive

Care

Supportive Care

DOHA Palliative Care Case Type

• Palliative care is care in which the clinical purpose or treatment goal is primarily to optimise the comfort and function of a patient with an active and advanced life limiting illness. It is always evidenced by:

– an interdisciplinary assessment, and

– a management plan to meet the physical, social, psychological, emotional and spiritual needs of the patient, and

– the availability of grief and bereavement support for the patient and their carers/family.

DOHA Palliative Care Case TypeInclusions:

• Palliative care provided in any setting and by any team

if, and only if, the above evidence is documented in the

medical record

• Grief and bereavement support for the family and carers

continuing after the death of the patient that is

documented in the patient’s medical record.

• Specialist palliative care, care provided with a

palliative approach and supportive cancer care.

“Palliative Approach” as a patient whose

needs could be met by a non specialist palliative care team “eg. aged care specialist

or general practitioner and a generalist

community nurse or non palliative care ward

nurse”.

“Specialist Palliative Care” as patients who

are considered to have complex needs requiring an interdisciplinary approach from

health professionals who have had specific

palliative care training or a specialist in

their field of palliative care. These patients are

more likely to have problems associated

with their disease.

“Supportive Care in Cancer” as patients who

require care whilst they undergo active anti-

cancer treatment, be it of palliative or

curative intent. These patients are more likely

to develop or have problems associated

with their treatment.

Aging Well

Australia’s Age StructureAn Indication of Health & Prosperity?

Australia’s Age Structure

An Indication of “Prosperity”?

Acute vs Chronic Illnesses

• We all live longer now

• More previously acute diseases are

becoming chronic, eg cancer

• We develop multiple co-morbidities

• Chronicity of disease allows more

complications to develop

• Frailty with disability now a chronic

condition

But Still, Life Ends – But How?

And Life Still Ends – But How?

What is Heart Failure?

CHF is a complex clinical syndrome with

typical symptoms (e.g. dyspnoea, fatigue) that

can occur at rest or on effort, and is

characterised by objective evidence of an

underlying structural abnormality or cardiac

dysfunction that impairs the ability of the

ventricle to fill with or eject blood

(particularly during physical activity).

Guidelines for the Prevention, Detection and Management

of Chronic Heart Failure in Australia. Updated October 2011

What is an Incurable Disease?

“The only cure for heart failure

is a heart transplant”

Cardiologist on the ABC 2015

What is an Incurable Disease?

“The only cure for heart failure

is a heart transplant”

Cardiologist on the ABC 2015

“Everything we (cardiologists)

do for heart failure with surgery or medicines

is to improve symptoms and quality of life”

What is an Incurable Disease?

“The only cure for heart failure

is a heart transplant”

Cardiologist on the ABC 2015

“Everything we (cardiologists)

do for heart failure with surgery or medicines

Is PALLIATIVE CARE”

Palliative Care Definition

Palliative Care is the total active care of

patients whose disease is not responsive to

curative treatment.

Other than heart transplantation, is heart

failure curable?

Can structural deficits to the myocardium

(not valves) be changed (or optimised)

Palliative Care Definition

Control of pain, of other symptoms, and of

psychological, social and spiritual problems

are paramount.

A focus on symptoms of heart failure

Must include psychological, social and

spiritual problems.

Perhaps what doctors already do to manage

symptoms is already palliative care!

Palliative Care Definition

The goal of palliative care is achievement

of the best possible quality of life for

patients and their families.

Best quality of life (in the face of a

reduced quantity)

Includes helping families

“Patients with Chronic Kidney Disease,

particularly those with End Stage Renal

Disease are among the most symptomatic of

any chronic disease group.”

Murtagh F, Weisbord S. Symptoms in renal disease.

In Chambers EJ et al (eds)

Supportive Care for the Renal Patient 2010, 2nd ed, OUP.

SYMPTOM PREVALENCE

Dialysis Conservative

FATIGUE/TIREDNESS 71% 75%

PRURITIS 55% 74%

CONSTIPATION 53%

ANOREXIA 49% 47%

PAIN 47% 53%

SLEEP DISTURBANCE 44% 42%

SYMPTOM PREVALENCE

Dialysis Conservative

ANXIETY 38 %

DYSPNEA 35 % 61 %

NAUSEA 33 %

RESTLESS LEGS 30 % 48 %

DEPRESSION 27 %

These Symptoms, Psychosocial

and Existential Issues

are Repeated in

Every Other End Stage Disease

Talking About End of Life

The Doctor is Waiting for the

Patient to Ask

The Patient is Waiting for the

Doctor to Ask

Talking About End of Life

Initiate Active Discussion

by the DOCTOR

DON’T WAIT FOR THE

PATIENT TO ASK

Patients (And Family)

Already Know

That they are very sick

May not completely understand why

Patients Want To Know

• Patient Choices

• Missed Opportunities

• Unnecessary Stress & Anxiety

• Regrets

• What Project to Bring Forward

• Making Plans, Wills etc

• Making it Easier for those Left Behind

……young patient who “hid” her illness from

family and friends, and now that she is close

to the end, she has regretted not having the

chance to resolve many things with her

family, but more importantly, she has not

been able to help her family plan for the

future without her.

Euthanasia isn’t a substitute for palliative care at the end of life

Richard Chye, SMH, 9 Nov 2015

The Story of Sara Monopoli

She was 34 years old with her first pregnancy

Found to have a malignant pleural effusion

(fluid on the lungs) from lung cancer

Induced labour “to get the baby out”

Started on erlotinib (chemotherapy tablet)

Complicated by

Chest Tubes

Pulmonary Emboli

The Story of Sara Monopoli

She started fourth line chemotherapy with

her doctors knowing the “minuscule

likelihood of altering the course of her

disease and a great likelihood of causing

debilitating side effects”

The Story of Sara Monopoli

She died from pneumonia in ICU with

antibiotics

The end comes with no chance for you to

have said “good-bye” or “It’s okay” or

“I’m sorry” or “I love you”

The Story of Sara Monopoli

“This is a modern tragedy,

replayed millions of times over”

“And it all happened because of an assured

NORMAL circumstance: a patient and family

(and a health system) unready to confront the

reality of her disease”

What Did the House of Lords

Teach Us About Anthony Bland?

Airedale Hospital Trustees v Bland [1992]

UK House of Lords 5 (4 February 1993)

URL: http://www.bailii.org/uk/cases/UKHL/1992/5.html

What Did the House of Lords

Teach Us About Anthony Bland?

Airedale Hospital Trustees v Bland [1992]

UK House of Lords 5 (4 February 1993)

URL: http://www.bailii.org/uk/cases/UKHL/1992/5.html

Deactivation of an ICD

Whilst it is tempting (emotionally) to link

the deactivation to death, we need to

recognise that it is the disease (heart disease

and its sequelae) that has caused the death.

Chronic Illness Trajectory

0

10

20

30

40

50

60

70

80

90

100

Chronic Illness Trajectory

0

10

20

30

40

50

60

70

80

90

100

Low, J. A., Chan, D. K. Y., Hung, W. T. & Chye, R.

Internal Medicine Journal 33 (8), 345-349.

Choices with regard to management

of recurrent aspiration pneumonia

on a background of severe dementia

Yes No Unsure P value

Would agree to further

hospital admissions for

treatment

32

(61.5%)

19

(36.5%)

1

(1.9%)

0.09

Would agree to

treatment with

antibiotics

38

(73.1%)

13

(25.0%)

1

(1.9%)

0.008

Low, J. A., Chan, D. K. Y., Hung, W. T. & Chye, R.

Internal Medicine Journal 33 (8), 345-349.

Choices with regard to management of

recurrent aspiration pneumonia on a

background of severe dementia (n = 52)

Choices with regard to management of

recurrent aspiration pneumonia on a

background of severe dementia (n = 52)

Yes No Unsure P value

Would agree to

artificial ventilation

22

(42.3%)

25

(48.1%)

5

(9.6%)

0.77

Would agree to

nasogastric tube

feeding

13

(25.0%)

36

(69.2%)

3

(5.8%)

0.002

Would agree to

gastrostomy feeding

12

(23.1%)

37

(71.2%)

3

(5.8%)

0.001

Low, J. A., Chan, D. K. Y., Hung, W. T. & Chye, R.

Internal Medicine Journal 33 (8), 345-349.

Yes No Unsure P value

Would agree to a modified

diet (e.g. blended, pureed,

thickened)

39

(75.0%)

8

(15.4%)

5

(9.6%)

0.0001

Would agree to continued

oral feeding (and accept

the concomitant risk of re-

aspiration)

31

(59.6%)

11

(21.2%)

10

(19.2%)

0.003

Choices with regard to management of

recurrent aspiration pneumonia on a

background of severe dementia (n = 52)

Low, J. A., Chan, D. K. Y., Hung, W. T. & Chye, R.

Internal Medicine Journal 33 (8), 345-349.

Community Palliative Care

• Many patients and their carers are

unaware of the possibility of receiving

palliative care at home

• Some do prefer to die at home

• Provide Backup

• Provide Choice

Community Palliative Care

What can be done in a hospice (or

palliative care inpatient unit) can and

should also be done at home (except

maybe initial drainage of a pleural

effusion)

Palliative Care and Suffering

spiritual

concerns

cultural

issues

social

difficulties

psychological

problems

physical

symptoms

pain

TOTAL

SUFFERING

Total suffering

needs

Total Care

which

requires

Interdisciplinary

Palliative Care

Community Palliative Care

Team Approach

– Doctors (Palliative Care, General

Practitioners)

– Nurses

– Allied Health

• Physiotherapists

• Occupational Therapist

• Social Workers

• Dieticians

Family & Friends

• Psychologists

• Pharmacists

• Paid Carers

• Volunteers

Community Palliative Care

Team Approach

– Doctors (Palliative Care, General

Practitioners)

– Nurses

– Allied Health

• Physiotherapists

• Occupational Therapist

• Social Workers

• Dieticians

Family & Friends

• Psychologists

• Pharmacists

• Paid Carers

• Volunteers

Community Palliative Care

Team Approach

– General Practitioners

– Nurses

– Family & Friends

Community Palliative Care

• Preparation, Preparation, Preparation

• Monitoring

• Medications

• Care Needs (Nursing & Equipment)

• Patient and Family Support

• Psycho-Social Support

• Expectation of Deterioration

• Explanation

Sacred Heart InpatientsPercentage of Deaths Within 2 Days of Admission

1.4%2.0%

9.9%8.4%

16.5%18%

15%

19%22%

0.0%

5.0%

10.0%

15.0%

20.0%

1999 2000 2001 2002 2003 2004 2005 2006 2007

0%

10%

20%

30%

40%

50%

60%

1999 2000 2001 2002 2003 2004 2005 2006 2007 2008

Hospices

Hospitals

"Home"

Place of Death of Patients Known to Palliative

Care Services in South East Sydney

(Excluding Calvary Hospital and Illawarra)

Community Palliative Care

The Provision of Home Support Packages

have help increase the proportion of deaths

at “home” (including RACFs)

40% of our community referrals can now die

at home in Eastern Sydney

>80% in Northern Sydney

Community Palliative Care

Home Support Packages (HammondCare,

Sacred Heart, Calvary Health)

Predicated on an Existing Pall Care Service

Personal Care Assistants (extra pair of hands)

Aimed at last 48 hours of Life

Extended for an Additional 48 hours

Can also be used now over extended periods

NSW Health extending for another 2 years

Community Palliative Care

• These services also provide emotional

support to patients and carers during the

terminal phase, as well as bereavement

support to carers.

What do

People,

Patients,

Doctors

Want

When Faced With An

Incurable Illness ?

Quality Care at the End of Life

Your Thought for the Day?

If you have a chronic illness

(that cannot be cured),

is your doctor already providing

PALLIATIVE CARE for you!!