Palliative Care

Overview And Concepts

Mike Harlos MD, CCFP, FCFPProfessor and Section Head, Palliative Medicine, University of ManitobaMedical Director, WRHA Palliative CareMedical 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?

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.

(a personal definition)

“Thank you for giving

me aliveness”Jonathan – 6 yr old boy terminally ill boy

Ref: “Armfuls of Time”; Barbara Sourkes

“What if…?“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?

• 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?

Palliative Care… The “What If…?” Tour Guides

Can Help Inform The Choice Of Not Intervening

Disease-focused Care(“Aggressive Care”)Disease-focused Care(“Aggressive Care”)

TodayDawn ofTime

Lifetime Risk of Dying (%)

0

100

50

A SOBERING TRENDLINE

Timeline

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

Lifetime Risk of:

Death: 1:1

Palliative Care – Relevance In Context

• 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

Progra

m

Progra

m

Criteria

CriteriaAvailable Services

Cure/Life-prolongingIntent

Palliative/Comfort Intent

Bereavement

DEATH

“Active Treatment”

PalliativeCare

DEATH

EVOLVING MODEL OF PALLIATIVE CARE

Societal acknowledgement of CA as a terminal illness

More definable palliative phase in CA than non-malignant 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.

Over-representation of cancer diagnosis, due to:

Withdrawal of life-sustaining therapy Inoperable surgical conditions

• Ischemic gut• Gangrenous limbs• Dissecting aortic aneurysm

Massive stroke Trauma

Palliative Care services should be challenged to broaden their involvement to address the needs of those affected by sudden, unanticipated end-of-life circumstances:

How To “Raise The Bar” Of Expectations

On Such a Fundamentally Sad Issue?

Low Expectations… how can you

have high expectations for death?

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 • Availability and Accessibility • Dignity – connection to the “who”

involved; the person

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

0 10 20 30 40 50 60 70 80 90

Asthenia

Anorexia

Pain

Nausea

Constipation

Sedation/Confusion

Dyspnea% Patients (n = 275)

Ref: Bruera 1992 “Why Do We Care?” Conference; Memorial Sloan-Kettering

Symptoms At The End of Life in Children With Cancer

Wolfe J. et al, NEJM 2000; 342(5) p 326-333

10

20

40

50

60

70

30

80

%

Pain Dyspnea Nausea And Vomiting

SuccessfullyTreated

(% Of Affected Children)

27 %16 %

10 %

SUFFERINGEMOTIONALPSYCHOSOCIAL

PHYSICAL

SPIRITUAL

CHALLENGE- Alleviate 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”

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

Effective care of the dying involves:

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

Control of

• Pain• Dyspnea• Nausea• Vomiting

Support

• Emotional• Spiritual• Psychosocial

CPR

Ventilation

Highly burdensomeInterventions

Infections

Transfusions

Hypercalcemia

Dialysis

Tube Feeding

PalliativeGenerally

Not Palliative

Variable

Potential Palliative Care Settings

Anywhere

Improving Palliative Care

• Core competencies• Curriculum in undergrad and post-

grad in all involved disciplines• Continuing education

Education Professional Practice

• 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

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