Medical assistance in dying and advance directives

Ruth Enns (disability rights leader and author)

Advance directives (AD) seduce us into believing that we can order up a beautifully scripted death like a latte-to-go.

However, in the July/August 2012 edition of Gray Matters, Jerome Groopman MD and Pamela Hartzband MD cited Muriel Gillick, MD, a geriatrician at Harvard Medical School and a researcher in end-of-life care, saying that “‘… the consensus … is that the directives have been a resounding failure.’” Nevertheless we are now to believe that we should be able to circumvent current euthanasia/ MAID restrictions by signing an AD even after a dementia diagnosis.

Groopman and Hartzband said the signatories “… cannot accurately imagine what they will want and how much they can endure in a condition they have not experienced.”

Caregivers tend to believe they know what care recipients experience, not understanding that their experience is of caregiving, not of receiving care. They can’t understand the recipient’s perspective any more than men who used to think they spoke for the women in their lives.

Secondly, many people change their minds after signing such a document. Would the authority figures interpreting the directive allow a change of mind or assume it is a product of the disease or disability, not to be taken seriously?

According to Richard Weikart, author of Unnatural Death: Medicine’s Descent from Healing to Killing, the first case of a physician being prosecuted in the Netherlands after euthanasia was legalized in 2001 involved a woman with an AD requesting euthanasia in the event of dementia.

But when her fears materialized, she changed her mind, rejecting the fatal injection three times. The doctor drugged her coffee. Still she struggled. Family members then restrained her to facilitate the euthanasia. Four years later, the doctor was acquitted.

In Canada, despite 428 breaches of current euthanasia/ MAID law in Ontario alone, no one has been prosecuted.

A third reason ADs don’t work is that the prevailing narrative views “disabled” people as lives not worth living.

In an American survey reported in Health Affairs in February 2021, more than 80 per cent of U.S. physicians perceived significantly disabled people’s lives as diminished, “… an attitude that may contribute to health-care disparities among people with disability.”

However, Lisa I. Iezzoni, a health-care policy researcher at Harvard-affiliated Massachusetts General Hospital told the Atlanta Journal-Constitution “Studies of people with disability show that most don’t view their lives as tragic … and view their lives as good quality.”

But wouldn’t authority figures interpret an AD in the light of the ableist narrative reflected in the survey?

Current legislation targets people with disabilities. If the euthanasia/MAID practitioner sees disabled people as having low “quality of life,” wouldn’t that person be inclined, consciously or unconsciously, to interpret an AD differently than the signatory intended?

Since the majority of non-disabled Canadians perceive the ableist narrative as truth, anything else will be and is ignored.

Would any other marginalized group face the same legal discrimination?

A fourth strike against ADs is our current stressed health-care system. What about the interpreter’s level of fatigue, social and other pressures? Fatigue and stress make most of us less tolerant than stress-free environments.

A fifth strike, as Groopman and Hartzband said, is that ADs “cannot encompass every possible clinical scenario.”

A sixth strike is that interpreters, usually medical practitioners, may well be strangers relying on maybe a cursory examination and other people’s notes in the signatory’s medical chart. Wouldn’t a lack of familiarity with the person tilt interpretation toward prevailing biases?

A seventh strike asks: is the euthanasia/MAID provider qualified or willing to assess the reasons prompting the request?

For example, is Dr. Ellen Wiebe in B.C., an enthusiastic and vocal member of the euthanasia/ MAID advocacy organization, Dying With Dignity, qualified to assess the person’s mental health?

Does she bother addressing social and economic pressures?

She has said she determines the person’s eligibility on her assessment of their “quality of life” rather than medical assessments. “Quality of life” is a vague catch-all phrase encompassing anything from economics to end-of-life distress.

As of March 2023 she had “helped” 431 people into the nearest hearse and faces no legal consequences, although she is getting pushback from her own clinic and others.

But what then? How are these directives to be used? As a yes-no shortcut for medical end-oflife decision-making? As legal protection for the interpreters?

Instead of ensuring choice, doesn’t signing ADs actually abdicate choice? Who is really empowered by such directives? The signatory or the interpreter? Are they not simply a manifestation of ableism?

If ADs don’t deliver on their promises for anyone, how can they deliver those promises for those diagnosed with dementia? Doesn’t that make vulnerable people even more vulnerable?

Groopman and Hartzband said, “… there are no shortcuts around emotionally charged and time-consuming conversations that involve patients, families and physicians.”

But who has time, resources and patience for such conversations these days?

Ruth Enns writes from Winnipeg.

Bioethicist Peter Singer Devalues Human Life and Supports Euthanasia

Richard Weikart
Professor emeritus, Department of History
California State University, Stanislaus

Peter Singer (left) Richard Weikart (right)

Richard Weikart published the book: Unnatural Death: Medicine's Descent from Healing to Killing (Order from Amazon).

In 2016, after my book The Death of Humanity: And the Case for Life appeared, I had a radio debate with Peter Singer, one of the thinkers I discussed in my book. The question for our debate was: “Is human life intrinsically valuable?” Singer argued that no, human life is not intrinsically valuable.

When the radio host asked Singer what would make a human more valuable than some other being, Singer responded that certain capacities that humans have give them value. In this interview, Singer specifically mentioned the ability for humans to make plans for the future, especially the long-range future. In his writings, Singer claims that a person must be “a rational and self-conscious being” in order to have a right to life. Singer overtly argues that humans who do not have the requisite rationality or ability to plan the future are not really “persons” and thus have no right to life. On the basis of this view, he believes it can be morally justifiable to kill infants, even after they are born, and to provide euthanasia to those with dementia.

While many euthanasia proponents insist that they only support voluntary euthanasia or assisted suicide, Singer is not so circumspect. His “personhood” theory provides justification for involuntary euthanasia when people no longer have a certain level of rationality or ability to plan the future.

One of the big problems with Singer’s philosophy is that he never provides any reason why rationality, self-consciousness, and the ability to plan the future have any value. In our debate I pressed him on this issue, asking why he chose those particular capacities, and I was stunned that he could not provide an answer. He stated, “I think that’s a discussion we should be having. This discussion needs to be an open one. We need to think about these things and perhaps we’ll eventually reach some kind of consensus on what’s important.” Thus Singer bases his whole conception of what gives value to human (and animal) lives on these traits, but he cannot provide a reason why they have value.

This problem is compounded by the fact that Singer’s own worldview undermines his own view that these traits confer value on (some) humans. Indeed in his many writings Singer argues forcefully that human life has no meaning and purpose, because biological life began “in a chance combination of gasses; it then evolved through random mutation and natural selection. All this just happened; it did not happen to any overall purpose.”[i] According to Singer’s worldview, human life is just a cosmic accident without any real significance.

Singer has continually campaigned against the idea that human life has value, meaning and transcendent significance. Thus the title of one of Singer’s books: Unsanctifying Human Life. In a 2004 interview Singer claimed that there is nothing special about humans, and then stated, “All we are doing is catching up with Darwin. He showed in the nineteenth century that we are simply animals. Humans had imagined we were a separate part of Creation, that there was some magical line between Us and Them. Darwin’s theory undermined the foundations of that entire Western way of thinking about the place of our species in the universe.”[ii]

Now here’s the contradiction: If both human life and the cosmos in general have no transcendent purpose or meaning, as Singer clearly believes, then how can rationality or self-consciousness or the ability to plan the future have more value than anything else in the cosmos? In Singer’s worldview, they are just as much the product of blind, chance processes as anything else in the cosmos. From my vantage point, it seems that Singer’s choice about what gives humans (and/or other animals) value is arbitrary (though Singer has obviously chosen traits that place himself within the ranks of “persons” who have a right to life).

But that’s not all. How much rationality or self-consciousness or ability to plan the future counts? These are not traits that one either has or doesn’t have. They exist on a continuum. Singer is often very cagey about this problem and doesn’t like to be pinned down about where to draw the line. In one of his earlier books he argued that a one-month-old baby may be killed, because it does not have the requisite rationality to be a “person.” However, more recently he tries to avoid drawing any line.

Where to draw the line is a huge problem, not only for Singer, but also for euthanasia proponents in general. When does a person’s life no longer have value? Different jurisdictions that allow assisted suicide and euthanasia draw the lines in different places. For those promoting euthanasia there doesn’t seem to be any logically consistent place to draw the line, so it becomes completely arbitrary.

A much better approach—and one that is not arbitrary—is to regard all human beings—regardless of their mental capacity—as persons with an inherent right to life. Thus we should value and protect the lives of all our fellow humans.

End Notes:

[i] Peter Singer, Practical Ethics (Cambridge: Cambridge University Press, 1979), 331.

[ii] Peter Singer, interview with Johann Hari, “Peter Singer—On Killing Disabled Animals, Saving Animals, and the Dangers of Superstition,” at www.johannhari.com/2004/07/01/peter-singer-on-killing-disabled-babies-saving-animals-and-the-dangers-of-superstition, accessed November 18, 2009.

Euthanasia's Past and Present Connection to Eugenics

Ridding the World of People with Disabilities:

Euthanasia’s Past—and Present—Connection with Eugenics

Richard Weikart
Professor emeritus, Department of History
California State University, Stanislaus

Richard Weikart recently published the book: Unnatural Death: Medicine's Descent from Healing to Killing (Link to order from Amazon).

When pressing for legalization of euthanasia and assisted suicide today, proponents generally try to sell it as an act of compassion toward those enduring horrendous suffering. They also claim that they are promoting freedom and autonomy, since the laws only allow for voluntary euthanasia or assisted suicide.

However, from the time the euthanasia movement arose in the late nineteenth century until today, it has often manifested a darker side: a tendency to support the involuntary killing of people with disabilities. From the 1870s, when the earliest public discussions of euthanasia began, through the early twentieth century, euthanasia was closely tied to the eugenics movement, which aimed at improving human heredity by eliminating people deemed “unfit” or hereditarily “inferior” and fostering reproduction of those deemed “superior” biologically. Of course, not all eugenics proponents endorsed killing people with disabilities; some thought compulsory sterilization would suffice (leading to compulsory sterilization laws in many states of the US and in some European countries).

In 1894 the British philosopher F. H. Bradley published an essay in the International Journal of Ethics that exemplified some of these problematic attitudes. He rejected the idea that humans lives are equally valuable and expressed utter contempt for those with mental illnesses: “I am disgusted at the inviolable sanctity of the noxious lunatic,” he admitted. They should not be institutionalized, he thought, since “it seems wrong to load the community with the useless burden of these lives.” Rather he argued that those who are “worse varieties” of humans should face “punishment.” Of course, the “punishment” he wanted meted out to those he called “dangerous specimens” was death.(1)

Bradley was not the only famous intellectual to promote involuntary euthanasia. In 1870 in Germany the leading Darwinian biologist Ernst Haeckel became one of the first to publicly endorse killing infants with disabilities, when he endorsed the idea in a popular book on biological evolution.(2) Like many others in the eugenics movement, he overtly rejected the idea that human lives are equally valuable. Then, in a 1904 book he condemned the idea that we should always preserve human life, “even if it is completely worthless.” In that book he not only defended infanticide, but he also vigorously argued that people with mental illnesses should be put to death, if a panel of physicians deemed it proper.(3)

The nineteenth-century German philosopher Friedrich Nietzsche, like Haeckel, radically rejected the idea of human equality, and he believed that those he deemed superior—the so-called Supermen—should dominate and even destroy the inferior masses. Nietzsche vociferously rejected moral ideals, such as love and compassion. In The Genealogy of Morals (1887) Nietzsche stated, “To sacrifice humanity as mass to the welfare of a single stronger human species would indeed constitute progress.”(4) He also wrote, “The great majority of men have no right to existence, but are a misfortune to higher men.”(5) Nietzsche overtly promoted suicide, and in 1882 he wrote a parable about a man who brought a “miserable and deformed” child to a saint. The saint advises the man to kill the child, and when some bystanders criticize him for this advice, he responds, “But isn’t it crueler to allow it to live?”(6) Thus Nietzsche’s philosophy, which is still quite popular in many intellectual circles, undermines the value of human life (at least of most human lives) and opens the door to involuntary euthanasia.

When the Euthanasia Society of America (ESA) was founded in the 1930s, the organization decided to focus on legalization of voluntary euthanasia. This was mostly a tactical move, as many of their members supported involuntary euthanasia, too, largely as a eugenics measure. One of the early presidents of the ESA, the New York neurologist Foster Kennedy, actually opposed voluntary euthanasia for the terminally ill, but supported killing the “hopelessly unfit.” He stated, “I am in favor of euthanasia for those hopeless ones who should never have been born—Nature’s mistakes.” He proposed that if parents and physicians agreed, five-year-old “defective” children should be killed.(7)

One of the most famous scientists in mid-twentieth-century America, Alexis Carrel, promoted involuntary euthanasia. Carrell was a Nobel-Prize-winning biologist who was featured twice on the cover of Time magazine in the 1930s. In a 1935 article on “The Right to Kill,” Time reported, “The Rockefeller Institute's famed Nobel Prizeman Alexis Carrel declared that sentimental prejudice should not obstruct the quiet and painless disposition of incurables, criminals, hopeless lunatics.”(8)

The most flagrant and shocking example of eugenics leading to involuntary euthanasia was the Nazi program to kill people with disabilities. The ideology underpinning this murderous program had been laid out in 1920 in a controversial book, Permitting the Destruction of Life Unworthy of Life, which was coauthored by the psychiatry professor Alfred Hoche and the law professor Karl Binding. In that book Binding stated that mentally ill people, whom he defined as “life unworthy of life,” are “not only absolutely worthless, but existences with negative value.” Binding and Hoche not only considered such people’s lives useless, but also warned that they were an economic burden on everyone else.(9) These ideas were controversial at the time, but nonetheless, a substantial number of German physicians and medical professors embraced them. This was not just a Nazi idea.

Soon after Hitler came to power in 1933, he pursued eugenics by introducing compulsory sterilization for those with congenital disabilities. The Nazis were very radical in carrying this out, sterilizing 350-400,000 people during their short time in power. Once he was at war with Poland, Britain, and France, he secretly directed his personal physician, Karl Brandt, and other Nazi officials to organize a massive program to kill people with disabilities. From early 1940 to August 1941 they killed about 70,000 Germans with disabilities in gas chambers in six facilities. Then they shut down these killing factories, but they continued the murderous rampage in a decentralized process at numerous asylums and hospitals. Ultimately about 200,000 Germans with disabilities, plus tens of thousands of others in German-occupied territories, were exterminated by the Nazi regime.

After the Nazi atrocities, public support for eugenics and euthanasia declined in the US and Europe. However, in the late twentieth century the euthanasia movement would experience a resurgence, beginning in the Netherlands and Belgium, and then spreading to the United States and Canada. While proponents touted this as bringing individual freedom, the reality is that society had to decide who was eligible to receive euthanasia or assisted suicide. Thus some of the same attitudes that had been so problematic in the earlier eugenics movement resurfaced: some people’s lives were deemed too valuable to receive euthanasia or assisted suicide, while others were deemed not so valuable. While anti-suicide programs are spending millions of dollars trying to discourage (some) people from killing themselves, other categories of people are being told: It’s not only OK for you to kill yourself, but we will help you do it.

Further, surveys of people in Oregon who have opted for assisted suicide show that such people are usually not doing it to escape pain and physical suffering. Rather, many of them are lonely and socially isolated. Further, many report that they no longer want to be a burden on society, which is precisely the way that the eugenics movement portrayed people with disabilities. In Canada some people with disabilities or medical problems have been urged by medical professionals or social workers to get euthanasia, showing that social pressure—sometimes subtle, sometimes overt—plays a role in euthanasia, too. It is not all about individual freedom and autonomy. The line between voluntary and involuntary starts to blur in many instances (and evidence suggests that in countries that have legalized voluntary euthanasia, physicians tend to be more open to providing involuntary euthanasia--secretly, of course, because technically, it is still illegal.

I understand fully that many proponents of euthanasia and assisted suicide today reject some aspects of the earlier eugenics movement. However, some of the problematic attitudes that fueled the eugenics movement in the late nineteenth and early twentieth centuries persist in the euthanasia movement. Wittingly or unwittingly, euthanasia advocates perpetuate the idea that human lives are unequal in value—and, just as in the eugenics movement, those considered inferior are those with disabilities or serious medical conditions. In addition these allegedly inferior people are being portrayed as (and often feel like) burdens to society who should “get out of our way.”

The way out of this downward spiral is for us hold firmly to the truth that all people are equal in value. Further, we need to offer love and compassion to those who are disabled, ill, or suffering, for that is what they really need. (By the way, I am the primary caregiver for my mother-in-law, who has dementia, so I am not just saying this glibly—I know what it means to sacrifice my time and energy to help a person with mental illness have a better life).

End notes:

(1) F. H. Bradley, “Some Remarks on Punishment,” International Journal of Ethics 4 (1894): 269-84; quotations at 272, 280, 281, 283-84.

(2) Ernst Haeckel, Natürliche Schöpfungsgeschichte, 2nd edition (Berlin, 1870), 152-55; quote at 155.

(3) Ernst Haeckel, Die Lebenswunder: Gemeinverständliche Studien über Biologische Philosophie (Stuttgart: Alfred Kröner, 1904), 21-22, 134-36.

(4) Friedrich Nietzsche, The Genealogy of Morals: An Attack, in The Birth of Tragedy and The Genealogy of Morals, trans. Francis Golffing (Garden City, NY: Doubleday Anchor, 1956), Essay 2, § 12, p. 210.

(5) Nietzsche, Will to Power, part 872, quoted in Jean Gayon, “Nietzsche and Darwin,” in Biology and the Foundation of Ethics, ed. Jane Maienschein and Michael Ruse (Cambridge: Cambridge University Press, 1999), 183.

(6) Friedrich Nietzsche, Die fröhliche Wissenschaft, in Werke in Drei Bänden, ed. Karl Schlechta (Munich: Carl Hanser, 1966), § 73, vol. 2, pp. 84-85.

(7) Foster Kennedy, “The Problem of Social Control of the Congenital Defective: Education, Sterilization, Euthanasia,” American Journal of Psychiatry 99 (1942): 13-16; quotes at 13, 14.

(8) “The Right to Kill,” Time 26, 21 (Nov. 18, 1935): 59.

(9) Karl Binding and Alfred Hoche, Die Freigabe der Vernichtung lebensunwerten Lebens. Ihr Mass und Ihre Form (Leipzig: Felix Meiner, 1920), 27-32.