Palliative Care for Non Cancer

Patients
8th Malaysian Hospice Congress
Penang 2008
Dr Ghauri Aggarwal
Palliative Medicine Physician
Concord Hospital, Sydney

Historical Context
! Palliative care for cancer patients and their
families
! Cancer: supportive care / symptom control
! Models of care, research and education reflect
cancer care
! Now: Increasing aging population worldwide
Table 3 Percentage of population aged 60 years or more in selected
selected countries, years 2000 and 2050a
2050a,b

Country 2000 2050

Italy 24 41
Germany 23 35
Japan 23 38
Spain 22 43
Czech 18 41
USA 16 28
China 10 30
Thailand 9 30
Brazil 8 23
India 8 21
Indonesia 7 22
Mexico 7 24

a United Nations Population Database: The Sex and Age Distribution of the World Populations.
Populations. New York: UN
Publications, updated 1998.
b WHO: Health and Ageing.
Ageing. A discussion paper. WHO/NMH/HPS/0.1/2001.

Historical Context
! Palliative care for cancer patients and families
! Models of care, research and education reflect cancer
care
! Increasing aging population worldwide
! Care of patients with advance disease is costly
! Large proportion of the health dollar
! Significant costs in the last year of life (US studies)
! WHO recommendations: earlier intervention of PC
! Symptom control for chronic diseases
 Palliative Care Principles
! End of Life Care
! Advanced care directives and ethics
! Terminal Care
! Symptom control
! Psychosocial support
! Bereavement support
! Multidisciplinary team care
! Non cancer context: HIV/AIDS

Are there differences?

! Trajectory of illness
 Case RK Knutsen 5/08

! 69 yo man recently in nursing home for respite

! Past Medical History
! IHD
! Cardiomyopathy LVEF 15%
! HT
! Fe deficiency anaemia

! Supportive frail wife who couldn’t care for him

! Repeated admissions into hospital with
worsening cardiac failure

Case RK Knutsen 5/08

! Admissions
! Iv infusion Dobutamine, dopamine and frusemide
! Discussions (family / cardiologist / palliative care)
! Poor prognosis
! Limitations of medical interventions
! Discharge to N/H
! Advance care planning: conservative management and not
for re-
re-admission, terminal care in the nursing home or home
(planned discharge home)
 Case RK Knutsen 5/08

! Re-admission to hospital
! Felt better within 24hours of inotrope and symptomatic
management: ‘I always do’
! Very calm and feeling in control
! ‘Wanting to live as long as he can with his wife of 35
years’
! Sister called in from the countryside numerous times:
‘he is dying’…….’he always pulls through’
! Remained at peace, symptoms optimally controlled and
died in hospital feeling everything possible was done

Illustrative Prototypical Death Trajectories

Scenar io A : Sud d en D eat h f r o m U nexp ect ed Scenario B: Steady Decline from a
C ause
Progressive Disease w ith a "Term inal"
Phase
Health Status

Tim e
T i me

Scenario C: Advanced Illness w ith

Scenario D: Slow Decline of Frail Patient
Slow Decline, Periodic Crises and
w ith Multi-System Disease
"Sudden Death"
Health Status

Health Status

Tim e
Tim e
 Are there differences?
! Trajectory of illness
! Different disease
processes
! Are symptoms different?
! Is terminal phase the
same?
! Diagnosing dying

Cancer Vs Non Cancer

Concord Palliative Care Patients
(Jan 1997 - Dec 2007)

Non-Cancer
23%

Cancer
77%
Number of patients = 4700
 Age Profile of Concord Palliative Care Patients
(Jan 1997 - Dec 2007)

1400
Number of patients 1220 Non Cancer
1200 Cancer
970
1000
800
488
600 504 399
297
400 250
191
83 107 35
200 10 17 52 32
0 2 0 14 27
0
Below 15

15-24

25-34

35-44

45-54

55-64

65-74

75-84

85-94

95-104
Age Groups
Total patients =
4700

Source of Referrals of Concord Palliative Care

Patients (Jan 1997 - Dec 2007)
Non Cancer Cancer
Surgical Surgical Cardiol
Units Renal Haemat Units 1%
14% 7% 9% 11%
Haemat Others
Cardio Colorect
5% 9%
9% 5%

Colorect Respirator Gastro

Others 1% y 7%
13% 8%
Gastro
6% Geriatric
7%
Respiratory
8% Neuro
3%
Geriatrics
Oncol 25%
6% Oncology
Neuro
41%
10%

Number of patients = 4700

 Reason for Referral of Concord Palliative Care
Patients (Jan 1997 - Dec 2007)
Non Cancer Cancer
Pain Other Pain Other
Total Control Symptom Control Symptom
Manage 13% Control 20% Control
ment 10% Total 10%
9% Manage Terminal
ment Phase
Terminal 14% 4%
Phase
15% Link to
PCS
Link to 20%
PCS
Other Social 10%
Other Social
42% problems
31% problems
1%
1%

Number of patients = 4700

Top 10 Symptoms of Concord Palliative Care

Patients (Jan 1997 - Dec 2007)
Number of recorded symptoms = 8122
0.30 Normalised data shown in chart

0.25

0.20
Non Cancer
0.15 Cancer

0.10

0.05

0.00
t y l
Pa
in
no
ea
ati
on mi xia ne
ss rg
y ilit era oss
yps sti p ea/vo n ore eak etha mob gen gh tL
us A L r i
D
Co
n W ck he e
Na La Ot W
Survival Time of Concord Palliative Care Patients
(Jan 1997 - Dec 2007)

2500 2279 2271 2240 Total number of deceased patients =

2170
2108 2986
2000
Number of patients

1745
Non Cancer Cancer

1500 1494
1314
1157
1039
1000 685 683
927
822
622 739 679
526 466 629
500
246 172 338
133 117 105
80 71 143
85
58 52
0 23 8 0

io n ay ay ay ay ay ay ay ay ay ay ay ay ay ar ar
ss < 1 d 1s t d 0 th d 0 th d 0 th d 0 th d 0 th d 0 th d 0 th d 0 th d 0 th d 0th d 0th d s t ye d ye
mi At 1 2 3 4 5 6 7 8 9 10 20 1 2n
Ad

Survival Time of Concord Palliative Care Patients

(Jan 1997 - Dec 2007) Normalised

1.20 1.00 1.00 Total number of deceased patients =

1.00 1.00 0.98 2986
1.00 0.95
0.92
Number of patients

0.91 Non Cancer Cancer

0.80 0.77
0.77
0.68
0.66
0.60 0.58
0.51
0.46
0.36 0.41
0.40 0.36 0.32 0.30
0.25
0.19 0.17 0.28
0.15
0.20 0.12 0.12 0.10
0.15
0.080.08 0.06
0.03 0.01
0.00 0.00
io n ay ay ay ay ay ay ay ay ay ay ay ay ay ar ar
ss < 1 d 1s t d 0 th d 0 th d 0 th d 0 th d 0 th d 0 th d 0 th d 0 th d 0 th d 0th d 0th d s t ye d ye
mi At 1 2 3 4 5 6 7 8 9 10 20 1 2n
Ad
 Care in older patients

Martin M. Evers, New York

! 1184 palliative care consultations
! More women 80yrs and above
! Cancer less prevalent, but still highest disease
! 38% vs. 60%
! Dementia, stroke, heart disease – 40%
! 17% dementia reason for referral
! (5% 65-
65-79, 1% <65)
! 32% also a diagnosis of dementia
! (11%, 4%)
! Decision making capacity: 28% vs. 51% vs. 60%
! Shorter ALOS, shorter time to referral to PC and
higher d/c to NH
 Martin M. Evers, New York
! >80 year old
! More likely to have a DNR order
! More recommendation to withhold or withdraw
life-sustaining treatments by PC
! Artificial nutrition, hydration
! Intravenous interventions
! Antibiotics

! Less communication with patient and more with

family / carers

Martin M. Evers, New York

! Fewer interventions for pain, nausea, anxiety and other
symptoms, but more for dyspnoea
! No difference in the 3 groups to frequency with which
recommendations from palliative care were
implemented
! Communication
! Symptom Mx
! Withhold or withdraw
! No difference in rate of advance care directives
! 60-
60-70% no directives
! 7% forego Rx other than CPR
Palliative Care: the needs and rights
of older people and their families
90
80
70
60
50 dyspnoea
40 confusion
30 pain

20
10
0
?
CA COPD CCF ESLD MOSF 80+
Lynn et al, Ann Int
Med, 1997;126:97

The level of need for palliative care: a

systematic review of the literature, PJ Franks
et al, Palliative Medicine 2000
The level of need for palliative care: a
systematic review of the literature. Pall
Med 2000
! Sample of 471 non-cancer deaths
! Lower percentage than in cancer: Pain prev 67%
! respiratory problems 49%: high
! nausea/vomiting 27%
! 6,900 p/M progressing non-malignant disease
! 3,400 p/M exp pain
! 3,400 p/M resp problems
! 1,900 p/M vomiting or nausea (Higginson ’95)

Care, Suffering and Ethics

 Suffering
! Increased awareness, diagnosis and treatment of
depression
! Up to 25% hospice patients are depressed
! Existential distress
! Syndrome of demoralisation
! Contributions by: Cassell, Cecily Saunders (‘total
pain’) and Kissane DW

Palliative Care and Suffering

! Provide the right and safe environment to
proceed through ‘the journey’ for patient
! ‘holding-frame’
! Multidisciplinary team
! The whole family included
! Bereavement care
! Risk assessment
 Are there differences?
! Trajectory of illness
! Different disease processes
! Are symptoms different?
! Is terminal phase the same?

! Education versus actual care

! Different palliative care programs

Admission to palliative care

! Admission to hospice and palliative care
programmes happen more by chance than by
needs (Addington-Hall et al.)
! Growing evidence that suffering from non
cancer terminal illness may require at least as
much palliative care as patients dying from
cancer
 Global Trends

Global setting
! The importance of Palliative Care
! Relatively cheap compared to therapeutic and
treatment programs
! Simple model
! Availability of drugs: morphine!
! Service delivery
! Cultural and country specific: who’s model?
 Are there differences?
! Trajectory of illness
! Different disease processes
! Are symptoms different?
! Is terminal phase the same?

! Education versus actual care

! Different palliative care programs
! Super specialisation!
! Generalist vs. specialist palliative care

Management Concepts
 Challenges in
Care Delivery
! Definition of Palliative Care
! Defining specialist palliative care
! Timely access and when to initiate palliative care
! Palliative care in the non cancer setting
! Advanced care planning
! Death preparation

Terminology!

specialists

generalists

Informal carers
Who’s responsibility?
Table 1 Size of problem. Estimated number of people who would need
need palliative care (in
millions)

Annual deaths globally 56

Annual deaths in developing countries 44

Annual deaths in developed countries 12

Estimated numbers needing palliative care 33

a
It can be estimated that approximately 60% of the dying need palliative care.

Oxford Textbook of Palliative Med 3rd Ed.

 Types of illness that may require
palliative care
! Cardiovascular
! End stage cardiac disease, ischaemic and cardiac failure
! Respiratory
! End stage respiratory diseases, chronic airways disease
! Nervous Disease
! MND, MS, Stroke
! HIV / AIDS
! Geriatric
! Dementia
! Renal
! Dialysis

Types of Issues
! Terminal care
! End of life care planning
! Feeding
! Ethical decision making
! Withholding and Withdrawal of treatment
! Symptom control
! Disease specific
! General principles
! Psychosocial care
! Bereavement support
 Context of Palliative Care
! Hospital Consultative service
! Exposure to these patients
! Opportunities for education
! Collaboration: academic and research
! Community service
! Resource adequate?
! Manpower and budgets
! Chronicity
! Hospice
! Bed numbers
! Funding
! Long stays

Better concept: Most patients need

both disease-modifying treatments
death
and help to live well with disease
Disease-modifying
“curative”
Treatment

Symptom
management
“palliative”
Advanced care planning
Family support (incl bereavement)
Time
Bereavement
 Local Practices

Place of Death of Concord Palliative Care Patients

(Jan 1997 - Dec 2007)
Non Cancer
Other Nursing Unknown Cancer
Nursing Unknown
Home Hospital Home 2% 5%
Other Home
PC 5% 2% 6% Other Other
Hospital 7%
Centre PCC PCC
EH PCS 6%
6% 1% 2% EH PCS
ward Home ward
1% 12% 1%

PC
Centre
16%

Concord Concord
ward ward
77% 50%

Total number of deceased patients =

2986
 Place of death of patients in SGH
collaborative heart failure program

Geriatrics: Concord Hospital

! Large geriatric population
! Advanced care directives
! Dementia: support / feeding / end of life care / family
conferences
! 2008: implementing a ‘Special Care Plan’
! Discussions about issues that might cause a life threatening
decline in medical condition
! Documentation of: Active treatment measures or not for
resuscitation for all patients
! Integrated End of Live Care Pathway: Liverpool
(Ellershaw) integrated pathway for the dying patient
 ICU: Concord Hospital
! Looking at the interphase between
communication, symptom control, satisfaction
of patients and staff
! Randomised study of palliative care input

Prognostication
! Significant advancement in tools for
prognostication
! Immune / cytokine studies
! Can we diagnose ‘dying’
! Can we predict a patients’ illness and death
trajectory
! Prediction and communication
 Conclusion
! We have a responsibility to utilise the principles of
palliative care for patients with advanced diseases
! Not all patients need to be referred to specialist
palliative care services
! Generalist versus specialist palliative care
! Empower other specialist to manage with a small
proportion of patients requiring palliative care
consultations
! Education
! Research
! ‘Care plan’
plan’ development

Conclusion cont’d
! Advanced care planning
! Readmissions
! Interventions
! Treatment options / life
prolonging measures
! End of life care decisions
! Place of care
! Place of death
! NFR
! Family support
 Education
! General symptom control principles
! Medical students to specialists levels
! Dialogue with our colleagues
! Support and debriefing
! Changing the culture of the hospital environment
! Common pathways
! Two-way education
! Ethics
! Early advanced care planning
! Prognostication