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End of Life Care: Different
Perspectives on What Options
Should Be Available in BC
Romayne Gallagher MD, CCFP, FCFP
Physician Program Director, Palliative Care Program
Providence Health Care
Clinical Professor, University of British Columbia
Faculty/Presenter Disclosure
 Faculty: Romayne Gallagher
 Relationships with commercial interests:
 Grants/Research Support: None
 Speakers Bureau/Honoraria: Purdue Pharma
 Consulting Fees: None
 Other:
CFPC CoI Templates: Slide 1

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Disclosure of Commercial Support
 No financial support has been made available for this presentation
CFPC CoI Templates: Slide 2
Mitigating Potential Bias
 I am not discussing any pharmaceuticals in this
presentation
CFPC CoI Templates: Slide 3

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Palliative Care
 Approach to care
 Backed by medical evidence
 Controlling symptoms
 prevention and relief of suffering
 Any life-threatening illness
 Early identification of those who would benefit
 Treating the whole person – body, mind, spirit
 Supporting the identified family
 Supporting survivors after the death
Palliative Care vs End-of-Life Care vs Terminal Care

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Does palliative care improve outcomes
in hospital?
Results of systematic reviews
Compared to conventional care, palliative care teams were associated with
significant improvements in:
 Pain
 Non-pain symptoms
 Patient/family satisfaction
 Hospital length of stay
 Reduces in-hospital deaths
Jordhay et al Lancet 2000Higginson et al, JPSM, 2003;
†Finlay et al, Ann Oncol 2002; Higginson et al, JPSM
2002.
NEJM August 2010
 151 patients newly diagnosed with metastatic lung cancer, randomized to
early palliative care v.s. usual care
 Outcomes: length of life, quality of life, mood
 Early palliative care group:
 Length of life was 2.7 months longer p=0.02
 Quality of life better p=0.03
 Fewer depressive symptoms p=0.01
 Temel et al NEJM 2010

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Why is physician-assisted dying &
euthanasia NOT part of palliative care?
 WHO definition 1990 and beyond
 “affirms life and regards dying as part of the normal process of living”
 “Neither hastens of prolongs life”
 “enhance quality of life and may positively affect the disease
process”
 The “work” of palliative care includes reframing the illness,
redefining hope, seeing a crisis as an opportunity, healing,
transforming suffering into emotional and spiritual growth
Willingness to engage or practice physician
assisted suicide amongst physicians
 Those with the most experience in end of life care are the least likely to
support PAD.
 Society for Canadian Palliative Care Physicians 2013 86% opposed/unwilling to
provide PAD
 Previous studies of physicians have shown relationships between lesser
knowledge of symptom management and symptoms of burnout and willingness
to participate or support euthanasia. Portenoy et al 1997; Craig A et al J Med
Ethics 2007; Curlin et al Am J Hosp Pall Care 2008
 Those who would be providing this service have the least experience in end-
of-life care

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Evaluation of competence to consent to
physician assisted dying: mental illness
 US forensic psychiatrists national sample – 290 respondents – 64% response rate
 61% suggested psychiatric assessment in some or all PAD requests
 58% recommended an automatic finding of incompetence if major mood
disorder present
 Ganzini et al Am J Psychiatry 2000
 Oregon psychiatrists: only 6% felt very confident that they could adequately
assess whether a psychiatric illness was impairing judgement of a patient
requesting PAD in one session. Just over half felt they could do this in the
context of a longer relationship.
 Ganzini et al Am J Psychiatry 1996
Mental Illness and Serious Illness
 In patients with terminal illness depression and hopelessness are highly
correlated with desire to hasten death
 K. Mystakidou et al Gen Hosp Psychiatry 2005; O’Mahoney et al J Pain Sympt
Manage 2005; Breitbart et al JAMA 2000; Mystakidou et al Int J Psych Med 2007
 The prevalence of major depressive disorder in 300 palliative patients was
19%.
 Rayner et al Palliat Med 2011
 A systematic review suggests true prevalence is higher 19-34%
 Hotopf et al Palliat Med 2002

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Evaluation of competence to consent to
physician assisted suicide– mental illness
 Review of official statistical report from Belgium, Netherlands, Luxembourg,
Washington & Oregon, USA
 Average of 5.4% of applicants see a psychiatrist (range 4.2-6.7%)
 McCormack R, Flechais R. Psychosomatics 2012
Evaluation of capacity to consent to
physician assisted dying: delirium
 Review of 302 consecutive medical inpatients with acute conditions
 24% automatically severely cognitively impaired, unconscious
 Of 159 who agreed to be interviewed 31% were not capable of consent
 Of the incapable patients (50) medical team only identified 12 (24%) as not
having capacity to consent
 Raymount et al Lancet 2004
 Prevalence of delirium in advanced illness – approx. 50%
 Leonard M et al Psychosomatics 2009

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Concerns about PAD programs
 Belgium: reporting of PAD is not mandatory.
 52.8% of cases reported
 Unreported cases showed significant difference: short time to
expected death, written request often absent, palliative care
less likely to be consulted
 Smets et al BMJ 2010
 Netherlands: reporting of PAD is not mandatory
 Estimate of 2.9% of deaths
 77% reported to a review committee
 Ending of life without explicit request 0.2–0.8% of deaths
 Onwuteaka-Philipsen et al Lancet 2012
Concerns about PAD programs
 US programs have tracking by prescription
 Rate stable at 2/1000 deaths
 No data available about who was refused a prescription
 Referral to psychiatry
 Oregon 2/77 in 2012
 Washington 3/121 in 2012
 Duration between first request and death
 Oregon 2012 median 47, range 16-388
 Washington 2012 no median/average range 21-1050

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Concern about PAD programs
 End of Life Concerns 2012 Washington
 Losing autonomy 94%
 Less able to engage in activities making life enjoyable 90%
 Loss of dignity 84%
 Losing control of bodily functions 56%
 Burden on family, friends/caregivers 63%
 Inadequate pain control or concern about it 33%
 Financial implications of treatment 5%
Physician Assisted Dying
 The vast majority of people die naturally
 Palliative care cannot relieve/remove all suffering
 There will always be a tiny minority of patients
who will want to control timing and
circumstances of their death
 Risks of harms/mistakes/abuse outweigh the
potential benefit

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What should we work for?
 Palliative care access and integration into all chronic
diseases
 Awareness of what palliative care can offer for people
with advanced illness
 Know your own limitations and when to refer to palliative
care team
 Further research on treating suffering
 Dignity-Conserving Care www.dignityincare.ca
 Canadian Virtual Hospice www.virtualhospice.ca