Practice Support ProgramEnd of Life

Learning Session 1

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Acknowledgements

• Practice Support Program End of Life Committees:

Dr. Cathy Clelland, Chair, Sheila Balson, Andy Basi, Sherry Bar, Dr. Doris Barwich, Dr. Clifford Chan-Yan, Louise Donald, Dr. Ian Courtice, Dr. Romayne Gallagher, Dr. Neil Hilliard, Pamela Hinada, Dr, Bruce Hobson, Dr. Marcus Hollander, Judy Huska, Pauline James, Dr. Marnie Jacobsen, Dr. Helena Kadlec, Liza Kallstrom, Dr. Douglas McGregor, Dr. Chris Rauscher, Pat Porterfield, Della Roberts, Christina Southey

• BC Hospice Palliative Care Association Learning Centre for Palliative Care: Hospice Palliative End-of-Life Primary Care Provider Education Project

• Fraser Health End of Life Care Program: Advance Care Planning Initiative

• Gold Standards Framework (http://www.goldstandardsframework.nhs.uk)

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Why we are here(25 minutes, including patient/family

voice and the module aim)

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Session opening

• Introductions• Housekeeping• Personal experience with PSP End of Life

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Module aims

To improve the care of patients and families living with, suffering and dying from life-limiting and chronic illnesses by:

Identifying patients early who could benefit from a palliative approach to care Enhancing GP & Specialist confidence and communication skills to enable

Advance Care Planning (ACP) conversations. Improving the experience of health care providers, patients and families:

o Assessing patient and family needs from a palliative perspective.o Improving the experience of the patient, family, physician, MOA and healthcare

providers in End of Life care.o Improve physician confidence related to End of Life

care (e.g. care planning, forms).

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Module aims

To improve the care of patients and families living with, suffering and dying from life-limiting and chronic illnesses by:

Improving collaboration:o Identifying and referring appropriate patients to specialty palliative

care and others for consultation and services.

o Understanding provider needs, clarifying roles, tools and resources for practice support and collaboration.

o Improving collaborative care planning, coordination and communication with patients/caregivers and physicians and other local health care and community providers.

“Integration in Action”

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PSP End of Life Care Algorithm

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Case study: Mr. James Lee and his wife

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Patient/Family’s voice video

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End of Life Care: Expanding the scope

(30 min. for this section plus Palliative approach to life-limiting disease

section)

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We are living longer. By 2025: • 30% of the population >65. • 33% increase in deaths over

2004.• 2/3 will die with 2 or more chronic

diseases after months or years in state of “vulnerable frailty”.

• Only 20% of us will die with a recognizable terminal (“palliative”) phase.

Changing face of dying

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Cause of deaths in Canada

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Fu

nct

ion

Death

High

LowBegin to use hospital more often, self-care more difficult

Time ~ 2-5 years. Death usually seems “sudden”

Modified from Lunney JR et al. JAMA 2003: 289: 2387.

TerminalPhase

End Stage Organ Failure: Approaching End of Life

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“There will not be a distinct terminal phase. The week we die will start out like any other and some unpredictable calamity will occur. Amongst those of us with advanced heart failure,

we will have had a 50-50 chance to live for six months on the day before we died”

Joanne Lynn: Sick to Death and Not Going to Take it Anymore (2004)

Ambiguous dying

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The Palliative Approach to life-limiting illness

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BereavementCare

Illness trajectory

Diagnosis of life-limiting

illness

Death

Disease-modifying therapy

Palliative Approach to Care

Canadian Hospice Palliative Care Association: Model of care (2002) www.chpca.net

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WHO definition of palliative care

Palliative care is an approach that improves the quality of life of patients & their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification, impeccable assessment & treatment of pain and other problems, physical, psychosocial and spiritual.

http://www.who.int/cancer/palliative/definition/en/

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The Palliative Approach: Living Well; Dying Well; and Bereavement

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Palliative Approach

Guided by person centered goals of care:1. Pain and symptom management.2. Psychosocial care for person.3. Psychosocial care for family.4. Spiritual care.5. Disease management.6. Preparing for and managing dying.7. Bereavement.

(Canadian Hospice Palliative Care Association: Norms, 2002)

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Goodlin, S. J. J.A.C.C. 2009;54:386-396Copyright ©2009

Patient journey in comprehensive heart failure care

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Palliative Approach: Care through all the transitions

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Time of

Diagnosis

Disease advancement

Complication indicators

Decompensation

experiencing life limiting illness

PPS

ESAS

BC Palliative benefits

Decline and last days

Dependency and symptoms increase

Home care

Death and bereavement

Transition 1

Time

McGregor and Porterfield 2009

Transition 5Transition 4Transition 3Transition 2

Early

Chronic Disease

Management

Hope for cure survivor

Seniors at risk

Best practice: Integrating the palliative approach

• Concurrent palliative and disease modifying care.

• Elimination of the “terrible choice”.

• Advance Care Planning and patient centered decision making.

• “Sick enough to die” rather than “certain to die”.

Melanie Merriman PH.D. MBA NHPCO Conference Fall 2003

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Best practice: Collaborative and interdisciplinary

Palliative Care Australia25

Outcomes: Palliative approach to care

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Improved quality of life

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Improved survival

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Outcomes

• “Good death” in the most appropriate location. • Better pain and symptom management.• Better long term outcomes for bereaved relatives.• Improved experience of care.• Better quality of care.• Lower health care costs.

Zhang et al. Arch Intern Med Vol 169(5) Mar 9 2009:480-488

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BC Guidelines.ca

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Table discussion (15 minutes)

• Introduce yourself and how you are involved with patients with chronic and life threatening illness.

• Identify what you hope to get out of the session today to improve the care of patients in relation to considering palliative/supportive care needs.

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Table discussion (continued)

Think about your self-audit OR a recent death

of a non-cancer patient you were involved with`• Were you satisfied with the experience?

If so, what made it work? If NOT satisfied, why not?

• What were some of the gaps in clinical care?• What could have been done differently?

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