Transcript Palliative Care Overview And Concepts Mike Harlos MD, CCFP, FCFP Professor and Section Head, Palliative Medicine, University of Manitoba Medical Director, WRHA Palliative Care Medical.

Palliative Care
Overview And Concepts
Mike Harlos MD, CCFP, FCFP
Professor and Section Head, Palliative Medicine, University of Manitoba
Medical Director, WRHA Palliative Care
Medical Director, Pediatric Symptom Management Service
What Is Palliative Care?
 Surprisingly difficult to define
 Not defined by:
– Body system (compare with dermatology, cardiology)
– What is done (compare with anesthesiology,
surgery)
– Age (compare with pediatrics, geriatrics)
– Location of Care (compare with ER, critical care)
Any illness, any age, any location…
What Is Palliative Care?
(a personal definition)
Palliative Care is an approach to care which focuses on comfort
and quality of life for those affected by life-limiting/life-threatening
illness. Its goal is much more than comfort in dying; palliative
care is about living, through meticulous attention to control of
pain and other symptoms, supporting emotional, spiritual, and
cultural needs, and maximizing functional status.
The spectrum of investigations and interventions consistent with
a palliative approach is guided by the goals of patient and family,
and by accepted standards of health care.
“Thank you for giving
me aliveness”
Jonathan – 6 yr old boy terminally ill boy
Ref: “Armfuls of Time”; Barbara Sourkes
Palliative Care… The “What If…?” Tour Guides
Can Help Inform The Choice Of Not Intervening
•
•
“What if…? •
•
What would things look like?
Time frame?
Where care might take place
What should the patient/family expect
(perhaps demand?) regarding care?
• How might the palliative care team
help patient, family, health care
team?
Disease-focused Care
(“Aggressive Care”)
A SOBERING TRENDLINE
100
Lifetime Risk
of Dying (%)
50
0
Dawn of
Time
Timeline
Today
Palliative Care – Relevance In Context
Lifetime Risk of:
Heart disease:
1:2 men; 1:3 women (age 40+)
Cancer:
> 1:3
Alzheimer's:
1:2.5 – 1:5 by age 85
Diabetes:
1:5
Parkinson’s
1:40
Death:
1:1
• Don’t confuse “Palliative Care” – the philosophy
of approach to care in the context of life-limiting
illness with “Palliative Care service delivery”….
• the latter is the application of the broad
philosophy within the constraints of existing
(limited) resources
• Services are focused on the most needy, which
tends to be in the final months of life
Available
Services
EVOLVING MODEL OF PALLIATIVE CARE
Palliative
Care
D
E
A
T
H
Cure/Life-prolonging
Intent
Palliative/
Comfort Intent
D
E
A
T
H
“Active
Treatment”
Over-representation of cancer diagnosis, due to:
 Societal acknowledgement of CA as a terminal
illness
 More definable palliative phase in CA than nonmalignant illness
 Maximizing quality of life in non-cancer illnesses
often requires expertise in that specific disease,
with aggressive disease-focused interventions
(CHF, COPD)
 Budget constraints on may preclude aggressive
disease-focused management of illness.
Palliative Care services should be challenged to
broaden their involvement to address the needs
of those affected by sudden, unanticipated endof-life circumstances:
 Withdrawal of life-sustaining therapy
 Inoperable surgical conditions
• Ischemic gut
• Gangrenous limbs
• Dissecting aortic aneurysm
 Massive stroke
 Trauma
How To “Raise The Bar” Of Expectations
On Such a Fundamentally Sad Issue?
Expect – if not demand…
• High level of skill and knowledge
in pain and symptom control
• Consultations if necessary
• Communication with patient
and/or family
 Clear, honest, respectful
 Proactive/preemptive when
issues predictable
Low Expectations…
how can you
• Availability
and Accessibility
• Dignity – connection to the “who”
have
highthe
expectations
involved;
person for death?
Compare With Other Interfaces
With Health Care
 Surgery
– Informed consent
– Teaching videos
– Booklets
 Obstetrics
– Prenatal classes
– Birth Plan
What About A “Death Plan”… with broader expectations
than the usual clinical issues in a Health Care Directive?
SYMPTOMS IN ADVANCED CANCER
Ref: Bruera 1992 “Why Do We Care?” Conference; Memorial Sloan-Kettering
Asthenia
Anorexia
Pain
Nausea
Constipation
Sedation/Confusion
Dyspnea
% Patients (n = 275)
0
10
20
30
40
50
60
70
80
90
Symptoms At The End of Life in Children
With Cancer
Wolfe J. et al, NEJM 2000; 342(5) p 326-333
80
70
%
60
50
40
30
20
10
Successfully
Treated
27 % (% Of Affected
Children)
Pain
16 %
10 %
Dyspnea
Nausea And Vomiting
PHYSICAL
SUFFERING
PSYCHOSOCIAL
EMOTIONAL
SPIRITUAL
CHALLENGEAlleviate Suffering for a Condition Which:
• Ultimately will affect every one of us:
•
•
•
•
•
•
- Large numbers
- We have our own “death issues” as care providers
Only approximately 10% of Canadians have access to specialty
care
Few physicians or nurses have even basic training
Clinicians don’t intuitively know when they need advice…
They don’t know what they don’t know
The process & outcome are expected to be terrible… after all, it is
death
 How can you tell when something inherently horrible goes
badly?
Has a tremendous impact on those close to the individual…
“collateral suffering”
No chance of feedback from patient “after the fact”
Effective care of the dying involves:
1. Adequate knowledge base
2. Attitude / Behaviour / Philosophy
• Active, aggressive management of suffering
• Team approach
• Recognizing death as a natural closure of life
• Broadening your concept of “successful” care
Potential Palliative Conditions
 “The Usual Suspects” – progressive life-limiting illness
– Incurable cancer
– Progressive, advanced organ failure (heart, lung, kidney,
liver)
– Advanced neurodegenerative illness (ALS, Alzheimer’s
Disease)
 Sudden fatal medical condition
– Acute stroke
– Withholding or withdrawing life-sustaining interventions
(ventilation, dialysis, pressors, food/fluids…)
– Trauma – eg. head injury
– Ischemic limbs, gut
– Post-cardiac arrest ischemic encephalopathy
– etc…
Potential Palliative Care
Interventions
Generally
Not Palliative
Palliative
Support
• Emotional
• Spiritual
• Psychosocial
Variable
CPR
Ventilation
Transfusions
Infections
Control of
•
•
•
•
Pain
Dyspnea
Nausea
Vomiting
Hypercalcemia
Tube Feeding
Dialysis
Highly
burdensome
Interventions
Potential Palliative Care Settings
Anywhere
• Core competencies
• Curriculum in undergrad and postgrad in all involved disciplines
• Continuing education
Education
• Stds of practice for symptom
management, availability,
responsiveness, communication
• Certain palliative interventions held
to higher scrutiny and rigour – eg.
palliative sedation
• Specialty area for nursing
Professional Practice
Improving Palliative Care
Public Awareness
• Raise awareness and expectations
• Improve “death culture”
• Empower in decision-making
Service Availability
• Core requirements for facility and
program accreditation (CCHSA)
• Risk management people need to
see poor palliative care as a risk
• Re-frame good palliative care as
prevention/promotion