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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!!