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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

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Palliative CareOverview 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


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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…


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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.


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“Thank you for giving me aliveness”

Jonathan – 6 yr old boy terminally ill boy

Ref: “Armfuls of Time”; Barbara Sourkes


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“What if…?

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

Can Help Inform The Choice Of Not Intervening

  • 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”)


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100

50

0

Timeline

A SOBERING TRENDLINE

Lifetime Risk of Dying (%)

Dawn ofTime

Today


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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

1:1

Death:


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  • 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


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Program approach to care in the context of life-limiting illness with “Palliative Care service delivery”….

Available

Services

Criteria

Palliative Care As A Philosophy Of Care


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D approach to care in the context of life-limiting illness with “Palliative Care service delivery”….

E

A

T

H

D

E

A

T

H

EVOLVING MODEL OF PALLIATIVE CARE

“Active

Treatment”

Palliative

Care

Cure/Life-prolonging

Intent

Palliative/

Comfort Intent

Bereavement


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Over-representation of cancer diagnosis, due to: approach to care in the context of life-limiting illness with “Palliative Care service delivery”….

  • 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.


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

  • Withdrawal of life-sustaining therapy

  • Inoperable surgical conditions

    • Ischemic gut

    • Gangrenous limbs

    • Dissecting aortic aneurysm

  • Massive stroke

  • Trauma


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How To “Raise The Bar” Of Expectations their involvement to address the needs of those affected by sudden, unanticipated end-of-life circumstances:

On Such a Fundamentally Sad Issue?


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Low Expectations… how can you their involvement to address the needs of those affected by sudden, unanticipated end-of-life circumstances:

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


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Compare With Other Interfaces their involvement to address the needs of those affected by sudden, unanticipated end-of-life circumstances: 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?


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SYMPTOMS IN ADVANCED CANCER their involvement to address the needs of those affected by sudden, unanticipated end-of-life circumstances:

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


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Symptoms At The End of Life in Children With Cancer their involvement to address the needs of those affected by sudden, unanticipated end-of-life circumstances:

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

80

70

%

60

50

40

30

20

Successfully

Treated

(% Of Affected

Children)

10

27 %

16 %

10 %

Nausea And Vomiting

Dyspnea

Pain


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PHYSICAL their involvement to address the needs of those affected by sudden, unanticipated end-of-life circumstances:

SUFFERING

PSYCHOSOCIAL

EMOTIONAL

SPIRITUAL


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CHALLENGE- their involvement to address the needs of those affected by sudden, unanticipated end-of-life circumstances:

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”


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Effective care of the dying involves: their involvement to address the needs of those affected by sudden, unanticipated end-of-life circumstances:

  • Adequate knowledge base

  • Attitude / Behaviour / Philosophy

    • Active, aggressive management of suffering

    • Team approach

    • Recognizing death as a natural closure of life

    • Broadening your concept of “successful” care


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Potential Palliative Conditions their involvement to address the needs of those affected by sudden, unanticipated end-of-life circumstances:

  • “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…


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Potential Palliative Care their involvement to address the needs of those affected by sudden, unanticipated end-of-life circumstances: Interventions

Generally

Not Palliative

Palliative

Variable

Support

CPR

  • Emotional

  • Spiritual

  • Psychosocial

Ventilation

Transfusions

Infections

Highly

burdensome

Interventions

Control of

Hypercalcemia

  • Pain

  • Dyspnea

  • Nausea

  • Vomiting

Tube Feeding

Dialysis


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Potential Palliative Care Settings their involvement to address the needs of those affected by sudden, unanticipated end-of-life circumstances:

Anywhere


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  • Core competencies

  • Curriculum in undergrad and post-grad in all involved disciplines

  • Continuing education

Education

Professional Practice

Public Awareness

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

  • Raise awareness and expectations

  • Improve “death culture”

  • Empower in decision-making

Improving Palliative Care


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