Published on: April 11, 2019

Published in: Chronic Conditions and End of Life Care, End of Life, Hastings Bioethics Forum

Imagine Ann, an 82 year-old widow in the Netherlands in decent physical health. She had a successful career and lives close to her family. Yet she fears further decline and, though she sees her family often, she feels increasingly lonely and useless. Growing weary of living and feeling that her life is completed, Ann is seriously contemplating ending her life with the help of a physician.

Should Ann be legally allowed to do this? Would permitting euthanasia or physician-assisted suicide for those who feel that their life is “completed” or who are “tired of life” but are otherwise in decent physical health reflect respect for individuals’ autonomous decision-making, or would it reflect unmet social support for older adults? Could it even shift societal ideas about what it means to care for older adults away from enhancing their quality of life to hastening their death?

These are among the questions that have been debated by many Dutch scholars and citizens for several years. Euthanasia and physician-assisted suicide, which have been legal in the Netherlands since 2002, account for almost 5% of all deaths. Several years ago, government ministers proposed legislation that would grant elderly people who feel their life is “complete” access to these options. Though that proposal did not become law, physicians and end-of-life specialists in the country expect similar legislation could be introduced in the future.

Among the voices in the debate is Els van Wijngaarden, an assistant professor and researcher at the University for Humanistic Studies in the department of care ethics in Utrecht, who was a visiting scholar at The Hastings Center in March. I interviewed Els via email about her research and findings on older people who wish to die. Here are edited excerpts of our exchange.

What is currently legal in the Netherlands concerning euthanasia and physician-assisted suicide?

van Wijngaarden: The Netherlands was the first country to legalize euthanasia, in which a physician administers a lethal substance to a patient, and physician-assisted suicide, where a physician supplies a lethal substance for a patient to take in the physician’s presence. When the law was passed in 2002, these practices were almost entirely restricted to terminally ill patients. Over the years, they have been extended to chronically ill people, psychiatric patients, and, most recently, older people suffering from an accumulation of old age impairments. If a person suffers from depression or another mental health condition, all reasonable treatments must be tried before the person can pursue euthanasia or physician-assisted suicide. In all cases, the patient’s suffering should be unbearable without the prospect for improvement and predominantly originate from a medical disease, either somatic or psychiatric.

What’s being debated is whether older people who consider their lives to be “completed” and no longer worth living, while being relatively healthy, should have a legal option for physician-assisted suicide or euthanasia. And a growing group of people are convinced that even the suffering from an expected, feared future situation, such as advanced dementia, should be grounds for legal dying assistance.

What does your research show about the motivating factors that underlie these older individuals’ wishes to end their lives?

van Wijngaarden: My research over the last few years has shown that many of these people might claim that they are making an autonomous decision. They might believe that these options give them a way to control death; some speak of it as a way to “safeguard themselves” from expected further suffering. But they may also disclose deep uncertainty. Despite their efforts to plan a good death, many of their accounts are also permeated by worries about the consequences of their actions.

Though these individuals can already end their own life without the assistance of a physician, such as by stopping eating or drinking, many postpone hastening death due to certain attachments to life, such as physical vitality, or responsibilities and duties towards themselves and others. Parallel to their wish to die, some people report a forlorn hope that things may change a bit for the good. Indeed, some keep doing exercises or going to the doctor for treatments to improve their health, such as surgery or medication.

Thus, I’ve seen a lot of ambivalence from those I’ve interviewed. I wonder about how to interpret this ambivalence. Shouldn’t it make us reluctant to enable or empower individuals who wish to die?

And what do these motivating factors say about social supports for older people in the Netherlands? About broader societal attitudes towards aging?

van Wijngaarden: My research supports the idea that, to some extent, older people’s sense of indignity and unworthiness appears to be rooted in their experiences of marginalization and exclusion. For example, many of the people I’ve interviewed use language indicating a sense of being an economic and social “burden.” Some have spoken about having a “roleless role,” living an “undignified,” “worthless,” or “futile” life, or the experience of being “socially dead.”

My research also shows that the elders who wish to die may have profound negative images about old age and about themselves being old, reflected in the discourse they use. Many have characterized old age as distinctly negative, using metaphors like being a “captive,” a “wreck”, or a “piece of dirt.” This indirectly demonstrates that widespread negative, stigmatized images of old age not only play a role in a societal devaluation of old age in general, but also affect how older people see themselves.

How can we best address the needs and concerns of older people who express the desire to end their lives because they are tired of living? Should we grant them access to euthanasia and physician-assisted suicide?

van Wijngaarden: Without trivializing the deep suffering of these people, in line with the Royal Dutch Medical Association, I think that we should be reluctant to view expanding access as an appropriate answer for social problems such as widespread feelings of loneliness and uselessness. I would rather advocate for the prioritization of good care. I believe we are compelled to build an inclusive society where older people might feel less marginalized. Along with building this society, I believe we should make more of an effort to encourage a public discussion that promotes the moral view that old age is part of life and considers ways to elevate the role of elders in our societies.

However, there is no quick fix for this highly complex and multidimensional problem. I think we need much more thorough research in this specific area. Currently, with a group of medical and humanities researchers, I am working on a follow-up project to empirically investigate the prevalence, characteristics, motives, and needs of Dutch older people who wish to die, commissioned by the Dutch government. I hope this project will deepen our understanding of this predicament, guiding us in properly and carefully addressing the issues at stake.

Learn more about van Wijngaarden’s research here.

Marnie Klein is the communications assistant at The Hastings Center.