Jeff Kirby

Professor, Department of Bioethics

Faculty of Medicine, Dalhousie University

Two case studies to help ‘ground’ the presentation and discussion

Clarification of some assisted dying terminology

Relevant ethical values and principles

Two distinct sets of assisted dying circumstances

Other ethical assisted dying issues and

considerations

What’s been happening in Canada?

Interactive dialogue

Normal critical/acute care practice◦ Withholding of potentially life-sustaining treatment

◦ Withdrawal of potentially life-sustaining treatment

Integrated palliative care practices◦ Potentially life-shortening use of pain/opioid

medication

◦ Proportionate, distress-relieving sedation

◦ Continuous deep sedation until death

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Assisted dying practices ◦ Physician-assisted suicide

◦ Voluntary euthanasia

The intentional administration of an intravenous or subcutaneous sedative medication at the end-of-life to induce and maintain a deep coma state until the patient dies

Usual length of CDS when artificial hydration and nutrition have been discontinued: 1 to 4 days

Either the patient or the patient’s legitimate substitute decision maker (if the patient lacks capacity) may consent to the use of CDS

The intentional ending of the life of the patient by (the hand of) the patient who consumes/drinks a lethal dosage of a barbiturate sedative medication; usually preceded by the use of an anti-nausea drug

The patient must be capable of consenting to an assisted death

One of the physician’s roles is to prescribe the sedative medication; the pharmacist’s role is to fill the prescription

The direct, intentional ending of the patient’s life by the physician’s intravenous administration of two medications:◦ Initially, a lethal dosage of a potent sedative

barbiturate

◦ Subsequently, after achievement of a coma state, a large dosage of a paralyzing (muscle-blocking) agent

Requirement for fully-informed, direct consent of the patient

Individual autonomy: foundational basis of ‘right to die (with dignity)’ and ‘choice in dying’ claims:◦ A person has the right, and should have the

opportunity, to choose his/her ‘life plan’ and to make meaningful decisions about her/his health care and treatment, including decisions that are made at the end-of-life

◦ This principle is actualized in health care through: 1) the informed consent/choice process, and 2) health care providers’ and organizations’ commitment to patient-centered care

Patient welfare principles ◦ Beneficence – the obligation of health care

providers and organizations to provide therapeutic benefits to patients with legitimate health care needs

◦ Nonmaleficence – the obligation of health care providers and organizations to do as little as possible harm to patients

‘Do as little as possible harm’ – what is the relevant harm in the assisted dying context?◦ Version 1: profound/unbearable suffering

experienced by a patient (primary perspective of supporters of assisted dying)

◦ Version 2: hastened death of the patient (primary perspective of those who are opposed to assisted dying)

Social justice◦ The responsibility of individuals and societies to

prioritize, and pay particular attention to, the interests and needs of members of historically marginalized and otherwise disadvantaged social groups

◦ It could be argued that individuals with a terminal illness who are experiencing profound distress/ suffering constitute a disadvantaged social group (for the purposes of eliciting the above obligation)

Concept of a ‘relevant difference’ – what makes it morally permissible (ok) to provide continuous deep sedation, assisted suicide or voluntary euthanasia to some patients (when it wouldn’t be ok to provide these practices to others):

◦ ‘3i’ paradigm circumstances:

Intolerable/unbearable suffering/distress

Distress/suffering is refractory to standard acute and palliative care treatments/interventions (intractable)

Death is predicted to be ‘near’/imminent – a few days to a few weeks

It is anticipated that death will occur ‘naturally’ within days to a few weeks

Current presence of profound suffering which is experienced as unbearable/intolerable by the person

The suffering is either primarily physical, e.g., shortness of breath, agitated delirium (confusion) or mixed physical and psychoexistential in nature

Intractable/refractory medical condition – realizable treatment modalities have failed or are anticipated to result in more burdens than benefits or (?) an informed decision to forgo further treatment been made by the patient

There are other circumstances in which persons seek out an assisted death when their death is not anticipated to be ‘near’◦ Presence of a significant health condition that, from

the perspective of the individual, makes the prospect of further life ‘not worth living’ because of one or more person-specific, quality-of-life factors

◦ Affected individuals in these circumstances tend to be highly-actualized in educational, occupational and economic domains

Typically, the distress in these non-paradigm circumstances is primarily of a psychoexistential nature

Examples of some negatively-perceived, quality-of-life factors in these circumstances:◦ Inability to participate in activities that formerly made life

meaningful and/or enjoyable

◦ Perception of current or anticipated, progressive loss of ‘self’, dignity, independence and/or social significance

◦ Preference for control over one’s destiny, including one’s ‘final exit’

◦ Desire to not become, or continue to be, a burden to loved ones

◦ Hopelessness

Recent high-profile Canadian examples:◦ Kim Teske – 52 woman with mid-stage Huntington’s

disease made a decision to permanently stop eating and drinking

Kim’s Choice: A death on her own terms

(Globe & Mail article and photojournal July 2014)

◦ Gillian Bennett - 84 year old, retired clinical psychotherapist in early to mid stage dementia committed suicide by drinking a sedative barbiturate in liquid form (with a “draught of good whiskey”)

Recent high-profile Canadian examples, cont’d:◦ Donna Delorme – Calgary-based advocate for assisted dying

(who was living with longstanding, progressive multiple sclerosis) committed suicide at home

◦ Elizabeth Fischer – 68 year old artist, musician and writer with terminal lung cancer chose to end her life in a DignitasClinic; her trip to Switzerland and her assisted death (via a vacation in Iceland) are largely funded by a “fun(d)raising wake” held in September 2015

Often used in an attempt to justify potentially life-shortening use of pain/opioid medication and continuous deep sedation

Essentially states that it’s morally permissible (ok) to deeply sedate patients or escalate dosages of their pain medication if the healthcare provider’s sole intention is to relieve profound suffering (in ‘3i’ circumstances) even though the risks – loss of consciousness and hastening of death – are foreseeable

Given the ‘exceptionally bad’ alternative – the continued profound suffering/distress of patients, the use of pain medications or sedatives in these atypical ways and in these particular circumstances is morally ‘good’, a proportionately beneficial response

Assisted dying practices are viewed as constituting discrimination against, and abuse of, persons with disabilities

Related concerns about: 1) reinforcement of existing negative stereotypes, 2) devaluation of the lived experiences of persons with disabilities, and 3) engenderment of a ‘duty to die’

American ‘Not Yet Dead’ grassroots disability rights activists view ADPs as “deadly forms of discrimination”, while the Council of Canadians with Disabilities opposes decriminalization of assisted dying and characterizes these practices as “killing with state sanction”

Dr. Catherine Frazee, a prominent Canadian disability rights activist, commented in 2014…◦ “See me as anything but your equal in human worth

and, at that moment, in that glance, with that sorrowful sigh, you have robbed me of dignity. Speak of willful death as a reasonable choice for persons afflicted with the presumed indignity of physical incapacity, and my dignity is undermined. This is not some trivial conceit. For my dignity is utterly bound up with your respect for my way of life. It is not abstract, and it is not a solitary attribute. Dignity is social.”

◦ http://ottawacitizen.com/news/national/catherine-frazee-there-can-be-dignity-in-all-states-of-life

A ‘paradox’ that many individuals who request an assisted death in non-paradigm circumstances are persons living-with-disabilities

Margaret Battin and colleagues failed to demonstrate a disproportionate impact of legally-available physician-assisted suicide on ten “vulnerable” social groups, including persons with non-terminal physical disabilities or chronic non-terminal illnesses (other than HIV disease) in a systematic analysis of physician-assisted suicide practice experiences in the early to mid 2000s in Oregon and the Netherlands

Battin MP, van der Heide A, Ganzini L, van der Wal G, Onwuteaka-Philipsen BD. Legal

physician-assisted dying in Oregon and the Netherlands: evidence concerning the impacts

on patients in “vulnerable” groups. J Med Ethics. 2007 Oct; 33(10): 591 – 97.

They are needed to: ◦ Comprehensively assess and treat patients who are

approaching death due to illness(es)/injury(ies)

◦ Help establish when necessary conditions are met

◦ Perform certain actions, e.g.:

Prescribe an oral sedative barbiturate for the patient to take (physician-assisted suicide)

Prescribe and administer a ‘lethal cocktail’ directly by intravenous injection (voluntary euthanasia)

Determine and declare death

What supports professional autonomy and the (partial) authority of physicians in end-of-life, clinical circumstances:◦ Generally-accepted principle of respect for

professional judgment

◦ Their accepted ‘legitimate stakeholder role’ in shared decision making about their patients’ health care and treatment

◦ Principle of conscientious objection: healthcare providers are not required to participate in all legal medical practices (under certain conditions)

Claim that the use of assisted dying practices in non-paradigm circumstances in Belgium and the Netherlands has opened-up an ‘imaginative public space for doubt and fear’ about assisted death practices

Recent sensationalist media attention paid to a

number of provocative euthanasia cases in Belgium:◦ 45 y.o. twins with congenital deafness who were progressively

losing their vision due to glaucoma

◦ A transgendered person

◦ A person with an eating disorder

◦ Planned euthanizing of a convicted murderer-rapist (Frank Van Den Bleeken)

Provocative cases in the Netherlands◦ Recent assisted suicide of a 47 y.o. person with tinnitus where

std. treatment trials had not been performed

◦ Recent assisted suicide of a pre-retirement individual who was concerned about being lonely when he retired in the future

Also contributing to the public’s doubt and fear about assisted dying practices…◦ Highlighting of past-actual and alarming future-

theoretical non-paradigm circumstances by articulate disability rights activists who have understandable concerns about possible, related devaluation of the lived experiences of persons with disabilities, given the long history of conscious and unconscious discrimination directed against them and members of other historically-marginalized and otherwise disadvantaged social groups in the health care domain

2009 - Canadian Society of Palliative Care Physicians indicated that it did not support assisted suicide and voluntary euthanasia – “they are not a part of quality end of life [palliative] care”; the CSPCP reiterated its opposition to euthanasia in a statement on Quebec’s Bill 52 and stated after the SCC decision that… “while not endorsing the act of physician assisted death, we will work actively … in partnership with … to develop those system guidelines that will seek to minimize potential harm for the majority and respect the rights of the minority who seek this mode of death.”

Canadian Society of Palliative Care Physicians. Position statement following supreme court judgment re.

Carter [Internet]. Surrey: Canadian Society of Palliative Care Physicians; 2015 Feb 12 [cited 2016 Jan 8].

Available from: http://www.cspcp.ca/wp-content/uploads/2014/10/CSPCP-Position-Following-SCC-

Judgment-12-Feb-2015.pdf

2013 Canadian Medical Association poll: 4 out of 5 Canadian physicians would be unwilling to participate in (legalized) assisted dying practices https://www.cma.ca/Assets/assets-library/document/en/advocacy/Canadian-Approach-Assisted-Dying-e.pdf

June 2014 - Quebec National Assembly passes Bill 52 which ‘legalizes’ voluntary euthanasia in near-death paradigm circumstances in Quebec; to be implemented in December 2015

Aug 2014 - recent change in position of Canadian Medical Association: an advisory resolution adopted during the Annual General Council Meeting supported the right of Canadian physicians to follow their consciences when deciding whether to engage in (legalized) assisted dying practices

Oct 2014 – Supreme Court of Canada heard an appeal of the decision by the BC Court of Appeal to overturn an earlier decision by the BC Supreme Court that ruled that the existing ban on assisted dying was unconstitutional

2015 SCC Carter v. Canada decision:◦ Created an exemption to the Criminal Code

prohibition against assisted dying that will become effective in early February 2016

◦ After that, physicians will not be criminally prosecuted if they assist their capable patients to die when they are experiencing…

Enduring and intolerable suffering of a physical or psychological nature as a result of a grievous and irremediable medical condition

*Note: these criteria make no reference to whether or

not the patient is near-death

Interpretation challenge…◦ Although it may be relatively easy for an attending

physician to determine/confirm whether her/his patient’s suffering is enduring and intolerable “to the individual in the circumstances of his/her condition”, it may be more difficult to discern whether the underlying medical condition(s) is grievous and irremediable in nature, particularly when this condition is a psychiatric disorder

Traditionally, the assessment of irremediability (refractoriness; intractability) is jointly-informed by the patient and her/his attending physician

Three-person panel appointed by the Harper Government to explore assisted dying legislative options

Provincial/territorial (- Quebec & BC) expert advisory group appointed by the Ontario Government to advise re. development of assisted dying guidelines/regulations

CMA developed ‘principles-based recommendations for a Canadian approach to medical aid in dying’

College of Physicians and Surgeons of Nova Scotia◦ Federation of Medical Regulatory Authorities of Canada

NS Health Authority & NS Department of Health and Wellness (?)