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End of Life Care: DifferentPerspectives 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 thispresentation

CFPC CoI Templates: Slide 3

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Palliative Care

Approach to care Backed by medical evidence

Controlling symptomsprevention 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 outcomesin hospital?Results of systematic reviews

Compared to conventional care, palliative care teams were associated withsignificant 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, JPSM2002.

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 diseaseprocess”

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 physicianassisted suicide amongst physicians

Those with the most experience in end of life care are the least likely tosupport PAD.

Society for Canadian Palliative Care Physicians 2013 86% opposed/unwilling toprovide PAD

Previous studies of physicians have shown relationships between lesserknowledge of symptom management and symptoms of burnout and willingnessto participate or support euthanasia. Portenoy et al 1997; Craig A et al J MedEthics 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 tophysician 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 mooddisorder present

Ganzini et al Am J Psychiatry 2000

Oregon psychiatrists: only 6% felt very confident that they could adequatelyassess whether a psychiatric illness was impairing judgement of a patientrequesting PAD in one session. Just over half felt they could do this in thecontext 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 highlycorrelated with desire to hasten death

K. Mystakidou et al Gen Hosp Psychiatry 2005; O’Mahoney et al J Pain SymptManage 2005; Breitbart et al JAMA 2000; Mystakidou et al Int J Psych Med 2007

The prevalence of major depressive disorder in 300 palliative patients was19%.

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 tophysician 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 tophysician 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 nothaving 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 toexpected death, written request often absent, palliative careless 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 psychiatryOregon 2/77 in 2012

Washington 3/121 in 2012

Duration between first request and deathOregon 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 patientswho will want to control timing andcircumstances of their death

Risks of harms/mistakes/abuse outweigh thepotential benefit

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What should we work for?

Palliative care access and integration into all chronicdiseases

Awareness of what palliative care can offer for peoplewith advanced illness

Know your own limitations and when to refer to palliativecare team

Further research on treating suffering

Dignity-Conserving Care www.dignityincare.ca

Canadian Virtual Hospice www.virtualhospice.ca