Legislative Background: Medical Assistance in Dying (Bill C-14, as Assented to on June 17, 2016)
Part 2 – Consideration of International Medical Assistance in Dying Regimes
Canada is not alone in establishing a legislative regime that includes exemptions from criminal law to allow medical assistance in dying. In addition to being informed by the Carter ruling and the many public consultation exercises that have taken place across Canada over the past year, Bill C-14 is informed by the laws relating to medical assistance in dying in other jurisdictions, as well as research on how those regimes work in practice,Footnote 28 much of which was also before the courts in the Carter case. (see Annex C for more information).
I. Foreign Laws Overview
At present, in addition to Québec, there are 8 jurisdictions with precise legal rules for the provision of medical assistance in dying: 4 US states (Oregon, Washington, Vermont and California), the country of Colombia,Footnote 29 and the European countries of Belgium, the Netherlands, and Luxembourg (often referred to as the “Benelux” countries). The laws (or ministerial resolution in the case of Colombia) share many similarities, in particular with respect to the safeguards, such as the requirements for a second opinion and a voluntary request by the patient that must be in writing, which almost all regimes require. Many regimes also require the written requests to be witnessed, and require wait periods between the request and the provision of medical assistance in dying (or at least require the physician to talk to the patient over a period of time to ensure the suffering is enduring and the decision is firm). Colombia has a process involving an interdisciplinary committee within each hospital that is tasked with assessing the request and supporting the person and their family through the process. Almost all regimes also have mandatory oversight systems involving monitoring and publicly reporting on how assistance is being provided. In Switzerland, although it is not a crime to assist someone to die by suicide for unselfish motives, there is no law regulating how and to whom the assistance can be provided or what types of safeguards are required.
The foreign laws take differing approaches with respect to eligibility such as: the types of medical circumstances that can enable a person to receive medical assistance in dying; whether assistance is available to adults only or also to minors; and whether a person can receive medical assistance in dying after they have lost the ability to express their wishes, based on a request made while they were competent (i.e., advance requests). The foreign laws also differ with respect to the form of medical assistance in dying that is permitted, i.e., whether the medication can be administered by the physician or whether the person must take the action that causes their own death by self-administering it. Some of these differences will be described below.
II. U.S. State Laws
The first place to enact legislation permitting medical assistance in dying was the US state of Oregon, which adopted the Death with Dignity Act in 1994.Footnote 30 The Oregon legislation permits a mentally competent adult (18 years or older) to obtain the assistance of a physician to die if they make a voluntary request and they suffer from a “terminal disease,” defined as “an incurable and irreversible disease that has been medically confirmed and will, within reasonable medical judgment, produce death within six months.”Footnote 31 There is no requirement for the person to be suffering intolerably.
The physician is only permitted to provide the person with a prescription for medication that could end their life (physician-assisted suicide). The Act expressly states that it does not allow physicians to end a person’s life by “active euthanasia.”Footnote 32 There is no possibility of advance requests that would be put into effect if the person loses their competence.
Data from Oregon indicates:Footnote 33
- From 1997 to 2014, 1,327 individuals received prescriptions for medication and one-in-three prescriptions (468) did not result in death from such medication;
- Physician-assisted suicide increased from 0.5 deaths per 100,000 population in 1998, to 2.6 deaths in 2014;
- The most common underlying illnesses are: cancer (69%), amyotrophic lateral sclerosis (ALS) (16%), chronic lower respiratory disease (4%) and heart disease (3%);
- The most important end-of-life concerns for these individuals were losing autonomy (91%), less able to engage in activities making life enjoyable (87%); and loss of dignity (71%).Footnote 34
The Oregon law has served as a model for 3 other US states that have adopted laws: Washington (2008), Vermont (2013) and California (2015). All provide eligibility only to adults who are terminally ill, in the sense of having a disease that is expected to cause their death within 6 months, and only permit the physician to provide medication that the person must self-administer. Numerous similar bills are currently before other state legislatures. (see Annex D)
Considerations for Canada
The US state laws, and the reports provided by the bodies tasked with monitoring them, have all been reviewed in the development of the Canadian legislation. In terms of eligibility, the legal approaches contain no mandatory requirement for the person to be suffering unbearably or intolerably from their condition or to be in an advanced state of decline. In other respects, however, they are fairly restrictive in permitting medical assistance in dying only to people who have a fatal disease and who are expected to die within six months.
While the US state approach may accommodate individuals suffering from certain diseases that lead to a steady, rapid and predictable decline toward death, it may fail to accommodate other types of conditions. For example, some degenerative diseases can progress more unpredictably and over a longer period of time, such that it can be more difficult to foresee when death will occur and suffering associated with the dying process can last longer. The US state approach also does not provide medical assistance in dying as an end-of-life option to intolerably suffering individuals who are not dying from a fatal disease, but who are nonetheless approaching death for other reasons.
Finally, as the US state approach only permits physicians to prescribe medication for the person to self-administer, it would not accommodate those who are physically unable to self-administer, leaving them unable to access a peaceful and pain-free medically assisted death.
In response to two rulingsFootnote 35 from the Constitutional Court of Colombia, the Ministry of Health and Social Protection in Colombia adopted Resolution 1216 of 2015Footnote 36 in April 2015 which establishes detailed rules and procedures for individuals who wish to access medical assistance in dying. Similar to the US state laws, eligibility is limited to adults who meet the definition of a “terminal patient”, which is defined as any person who has a serious condition or pathology that is progressive and irreversible with a prognosis of approaching death or death within a relatively short timeframe. While the resolution does not require that the person have less than 6 months to live, it does contemplate those who are dying in the short term.
Unlike the US state laws, a terminal patient in Colombia can only obtain what is commonly called voluntary euthanasia, i.e., where a physician directly administers the medication to cause the person’s death. Also different from the US state approach, Colombia does permit a patient to prepare an advance request in case they become no longer capable of expressing their wishes in the future.
Considerations for Canada
Like the US state laws, the Colombian approach appears somewhat limited by virtue of the requirement that death be expected within a relatively short time frame. The language of “terminal patient” also suggests, although it is not entirely clear, that the patient must be dying from the illness that is progressive and irreversible, which would also deny access to those who may be approaching death but whose suffering stems from non-fatal conditions. As the Resolution was adopted in 2015, there is as yet no publicly available data on the experience with medical assistance in dying in Colombia.
IV. Belgium, the Netherlands and Luxembourg (the “Benelux” countries)
Both the Netherlands and Belgium enacted legislation in 2002,Footnote 37 although courts in the Netherlands had over several decades developed criteria for physicians to perform what is commonly called voluntary euthanasia without criminal consequences. Luxembourg enacted its law in 2009.Footnote 38
Regarding eligibility, the three Benelux laws are very similar: people are eligible if they have “intolerable” or “unbearable” suffering, either physical or psychological, resulting from a serious and incurable medical condition, and where there is no prospect of improvement. They can be eligible even if they are not dying or suffering from a condition that is life-threatening. As a result, people have obtained assistance to die in the Benelux countries where they suffer only from mental illness, from a physical disability, or other medical conditions that do not shorten life.
Some cases from Belgium and the Netherlands involving patients who were not nearing death have received significant international media attention, for example: a transgendered person suffering psychologically after a failed sex change surgery; middle-aged and deaf twins who were also going blind; an anorexic woman who was a survivor of sexual abuse; individuals suffering from grief at the loss of loved ones.Footnote 39
Data collected in these jurisdictions indicate some changing trends. While cancer is still the main underlying illness for medical assistance in dying requests, its proportion has decreased significantly in recent years, while the proportion of mental illness cases has increased. For example, in Belgium, cancer represented 83% of all medical assistance in dying performed in 2003 compared to 69% in 2013, while mental illness cases increased from zero in 2003 to 4% in 2013 of all medical assistance in dying reported.Footnote 40 Similarly, in the Netherlands, cancer represented 88% of all medical assistance in dying performed in 2003 compared to 74% in 2013. Data on mental illness in the Netherlands has been reported starting in 2012 only, but has shown a consistent and significant yearly increase from 14 cases in 2012 to 41 cases in 2014.Footnote 41
In Luxembourg, medical assistance in dying is available only to adults. In the Netherlands, minors as young as 12 can request medical assistance in dying with their parents’ consent, and minors aged 16 and 17 can request such assistance as long as their parents have been consulted. Belgian law provides access to adults and “emancipated minors”Footnote 42 equally. Amendments to Belgian law in 2014 extended eligibility to all minors, but on narrower grounds of eligibility than exist for adults and emancipated minors: they must be in constant and unbearable physical (but not psychological) pain, and they must be likely to die in the short term. Parental consent and other additional safeguards are also required in these circumstances.
Advance requests in case of loss of competence
All three Benelux laws permit individuals to make an advance request for medical assistance in dying that could be carried out in case they lose their ability to express their wishes. In Belgium and Luxembourg, the request can only be carried out where the person is “in a state of irreversible unconsciousness”, e.g., in a coma. Only in the Netherlands are advance requests permitted where the person is unable to express their wishes but is nonetheless conscious, such as persons with dementia or Alzheimer’s.
Considerations for Canada
The Benelux laws were studied closely, in particular their approach to eligibility. While some recommended this approach for Canada, others expressed concern about it. Accordingly, the Government has committed to study additional complex circumstances in which a person may seek access to medical assistance in dying, namely requests by mature minors, advance requests, and requests for assistance where mental illness is the sole underlying medical condition.
All regimes worldwide, except for those in Belgium and the Netherlands, limit access to adults. The 2014 extension of eligibility to children in Belgium was controversial, including in Belgium, and drew international media attention. The trial judge in Carter heard a significant amount of evidence on views about medical assistance in dying in Canada and found that there was a strong consensus that if it were ever to be ethical, it would only be with respect to a “competent, informed, voluntary adult patient who is grievously ill and suffering from symptoms that cannot be alleviated.”Footnote 43 There was no evidence before the courts in Carter concerning the development of the brain and mental capacity of minors to understand the consequences and seriousness of such a decision, nor is there at present any available information about the willingness of Canadian physicians to provide medical assistance in dying to minors. The Canadian Paediatric Society, in their submission to the Special Joint Committee, recommended against including access for minors at this time, and submitted that comprehensive consultations should be undertaken before moving in this direction.Footnote 44
With respect to advance requests for medical assistance in dying that would be carried out after the patient has lost the ability to express their wishes, evidence from the Netherlands suggests that in the case of individuals suffering from dementia, physicians are generally unwilling to administer medical assistance in dying after the patient has lost the ability to express their wishes.Footnote 45 This evidence raises questions about the prospect of permitting a practice that Canadian physicians and nurse practitioners might be unwilling to honour. In its testimony before the Special Joint Committee, the Alzheimer’s Society of Canada noted that the disease has become a special focus in the debate about physician-assisted dying, but it nonetheless warned of the risks associated with permitting medical assistance in dying for individuals who have lost the ability to express their wishes. For instance, they indicated that the nature of the disease makes it “difficult or impossible to know what the person with dementia comes to value over time, especially if those values are at odds with previously expressed desires” and that the “risks are just too great” to allow such assistance when a person is no longer competent to express their wishes.Footnote 46 Other evidence supports the view that people generally make poor predictions about how they will cope with negative events in the future, and that in fact people cope much better than they anticipate.Footnote 47
There has also been significant discussion regarding eligibility for individuals who suffer unbearably only from mental illness. In the Benelux countries, the only places where medical assistance in dying in these circumstances is legal, this remains controversial. Recently, a group of 65 professors, psychiatrists, and psychologists in Belgium wrote an open letter “about the increasing trivializing of euthanasia on the ground of psychological suffering only” and urging the law to be amended to exclude medical assistance in dying in these circumstances.Footnote 48 A recent study of assistance in dying for individuals with mental illness in the Netherlands found that in more than half of approved cases, people declined treatment that could have helped, that many cited loneliness as an important reason for wanting to die, and that people often sought help to die from doctors they had not seen before.Footnote 49
Broad eligibility for medical assistance in dying could pose real risks for individuals who are marginalized, lonely, or lacking in necessary social or other supports, and it could re-enforce negative social perceptions about the quality of life of people who are ill or disabled. For instance, as one witness wrote in a submission to the Special Joint Committee: “Having to wear diapers and drooling are highly stigmatized departures from what is expected of adult bodies. Those of us who deviate from these norms experience social shame and stigma that erodes resilience and increases vulnerability. The more deeply these stigmatized accounts are embedded in our discourse and social policy, the more deeply virulent social prejudice takes hold within our culture.”Footnote 50
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