Article begins

Medical aid in dying shows us how care is a reciprocal act in which the dying person also takes care of the living.

On the morning of her death, Sally Hammond dressed herself in a pair of red and white striped knee-high socks. Hoping to make her sons laugh, she topped off her look with a fanciful blouse with yellow embroidery that she found in the back of her closet. Hours later, after heading to her bedroom to swallow a lethal dose of medication lawfully prescribed by her doctor, she doubled back to the kitchen to arrange a tray of cheese and crackers for the friends and family that had gathered to witness her death. “Right to the end, she wanted to make people comfortable,” her dear friend Lisa later explained. “Make sure that they had a couple of laughs.”

Sally is one of dozens of Vermont residents whose stories I collected during three years of research about medically assisted death. The state’s 2013 Patient Choice and Control at End of Life Act (also known as Act 39) permits physicians to write a lethal prescription for terminally ill, mentally competent adult patients. Since Oregon first legalized medical aid in dying in 1997, 10 additional US jurisdictions have followed suit, and several more states are now debating similar legislation.

I wanted to understand how this growing yet still controversial social and political movement might transform the culture of death and end-of-life care in American society. Like the best ethnographic projects, it has led to some unexpected questions. What happens when end-of-life care means the dying care for the living?

Credit:

Emily Thiessen

Illustration of two people and everyday items around them

Sally’s mundane acts of care—to humor and nourish her family in the moments after her death—poignantly encapsulate a core yet often overlooked motivation for assisted death. Advocates’ arguments for medical aid in dying emphasize autonomy and the desire for personal control over the dying process. Many want to remain independent in the final stages of life, particularly with bathing and toileting. But proponents of medical aid in dying also want to live life fully right until the end—and this means caring for others.

The desire to care for others through one’s death is complicated and even dangerous, however. Where legalization movements for medical aid in dying have been successful, they have marshalled bioethical arguments that justify the practice as a matter of individual, autonomous choice. Consider the end-of-life advocacy organization Compassion & Choices’ popular slogan, “My life. My death. My choice.” Opponents, such as the disability rights group Not Dead Yet, have expressed concerns that aid in dying could subject people to coercion by family members or caregivers to end their lives prematurely. Proponents like Compassion & Choices have countered such worries by pointing out that there are safeguards in place to ensure that the choice for medical aid in dying is independent and voluntary. These include the requirements that the patient be mentally competent and that the lethal medication be self-administered. The notion that one might pursue a medically assisted death out of concern for others threatens the very arguments that have authorized it.

When I interviewed Lisa, six months after Sally’s death, she relayed a text message exchange she had had with Sally several days before she died. Sally complained of congestion that had kept her awake clearing her throat for four hours. “Should you have home health to come?” Lisa asked. “Maybe they can help.” Sally responded that there was nothing they could do. “I’m thinking of the suicide script,” she wrote, referring to the prescription her physician had written under Act 39. “I’m sick of being sick and that would help my family. I don’t want to do it if it freaks them out.”

Sally’s message captures a core dilemma surrounding the choice for a medically assisted death. For some, it may be considered a final act of care: it alleviates family of the twinned burdens of end-of-life care and watching a loved one suffer. Sheila, a woman who experienced two significant deaths in a single year, felt fortunate that her best friend’s medically assisted death was not as long and drawn out as her father’s death from Alzheimer’s disease. She told me, “I have to say that Act 39 was a gift for me as well. Not just for her to avoid an awful, slow, painful death. You know, it’s certainly not designed for the caregiver, but…I was grateful that I didn’t have to experience that again.”

Her comments suggest that in releasing control, we allow ourselves to be fully cared for.

For others, however, caring for dying loved ones is a gift rather than a burden. And others still may perceive medical aid in dying as a traumatic event that causes caregivers to suffer, as Sally’s worries about “freaking out” her family suggest. Parsing the different meanings of care and suffering assigned to this choice is challenging in a context in which it is primarily the ill person’s values that are deemed important.

While death is undeniably a solo journey, anthropological research has demonstrated abundantly that we also die in community, surrounded by caregivers and loved ones whose mortuary and grief rituals set death in a meaningful cultural framework. Yet the sociality of death and care for the dying has been largely excluded from the public conversation on medical aid in dying. The motivation to avoid being a burden—to die to “help my family,” as Sally put it—is silenced because it represents a possibility that choosing death might not be independent and autonomous.

This silencing has harmful consequences. It distorts the complex reasons why people may be motivated to pursue an assisted death. It also distorts the complex effects that medical aid in dying may have on care at the end of life. This includes the possibility that care, as material practice and affective orientation, is bidirectional and reciprocal. Casting end-of-life decision-making as an exercise of individual autonomy obscures the messy relations of care in which nearly all people, and dying people even more so, are entangled.

After a course of cancer that had lasted more than 20 years, Bennett Tucker was attracted to the option of medical aid in dying to avoid a prolonged dying process. He felt fortunate to have a supportive oncologist, who agreed to prescribe the medication. Bennett’s wife, Noreen, had dutifully cared for him for years, helping him navigate clinical trials and chemotherapy, then later bathing, dressing, and catheterizing him. Eventually, this care became too taxing on Noreen, a slight woman in her sixties. Tired and discouraged, Noreen was on the cusp of broaching the possibility of hiring full-time caregiving support in their home when Bennett announced that he was ready to take the lethal dose of medication that he already had on hand.

Noreen did not discuss with Bennett his reasoning around the timing of this choice. I do not know whether and to what extent he may have been influenced by his wife’s struggles to manage his care on her own. Was Bennett coerced to end his life using medical aid in dying? That seems very unlikely. He had expressed interest in the option months earlier; it was only a matter of when. Yet this story, and the multiple possibilities it contains, reveals how relations of care can muddle motives for assisted death, exposing the limits of casting decisions for medical aid in dying starkly in terms of autonomous choice or coercion.

While death is undeniably a solo journey, anthropological research has demonstrated abundantly that we also die in community, surrounded by caregivers and loved ones whose mortuary and grief rituals set death in a meaningful cultural framework.

One of my primary goals in this research has been to shine a bright light on these issues, which are all too often concealed from public view. In my new book, Scripting Death: Stories of Assisted Dying in America (2021), I argue that medical aid in dying is a deeply relational practice that necessarily implicates caregivers and health care providers in end-of-life planning and choices. This relationality challenges and ultimately reframes the central prominence of autonomy in advocacy discourses surrounding assisted death.

Sally moved past her indecision in the days following her message to Lisa, in which she admitted to thinking of the “suicide script.” One of her last projects was a memory box made for each of her grandchildren, filled with special keepsakes. This was quintessential Sally: always doing for her family and for others. In the hours before her death, she bustled around her house, changing the bag on her vacuum cleaner, making a pile of books to return to the library, all while her friends implored her to stop, assuring her that they could take over these mundane tasks.

Such reversals of care at the end of life were plentiful among the people I interviewed. There was the man who chose the date for his death to prevent his friends from having to travel in bad weather, the woman who gave her dog to a lonely companion, and many who bequeathed treasured art and objects. One woman was concerned for the teenage daughter of a close neighbor and friend and designed a departure ritual to address the girl’s separation anxiety.

Yet there is another way of looking at these final acts of care. In the course of my research, a physician shared with me a disturbing dream in which he had ingested medication for a medically assisted death. While waiting for the medication to take effect, he became obsessed with the notion that he must take out the garbage before dying so as not to leave this task to his family. He ended up collapsing, dead, on a literal trash heap, and then woke up.

This dream—or nightmare, maybe—offers a cautionary tale about the inability to relinquish care responsibilities at the end of life. It also reveals the tight enmeshment of care and control. For many who pursue medical aid in dying, continuing to fulfill obligations of care is a way of holding fast to control over one’s daily routines.

Medical aid in dying allows us to see that caring for others in and through death stretches in many directions, some of which extend outward from the dying person.

This issue ties into a concern expressed by critics of medical aid in dying: without relinquishing care to others, a vital aspect of dying is lost. One of the primary reasons why people pursue assisted death is to avoid being a burden on others as their physical capacities decline. Critics worry that the desire to avoid depending on others for care reveals cultural assumptions about what kind of life is worth living that devalue the lives of people with disabilities.

Some also argue, as one anti-assisted death activist told me, that allowing others to care for you while dying is valuable and meaningful. She had taken care of her mother until her death, and she expected her children to do the same for her. She explained, “I think you have to leave a little bit of it up in the air. I don’t expect to control every moment of my dying. I’m telling my kids…sorry guys, if you’ve got to change my diaper, you’re going to have to change my diaper.” Her comments suggest that in releasing control, we allow ourselves to be fully cared for.

Sally’s story highlights other intriguing possibilities for end-of-life care, however. The last text message Sally wrote Lisa prior to her death is revealing. Lisa had said she was coming over right now, and asked Sally if she needed anything. “Fancy Feast, a 40-ounce bag,” Sally replied. She would be leaving behind a husband with dementia, and she worried that he would forget to feed their cat.

Leaving one’s family and pets well-fed at one’s death is a basic enactment of end-of-life care. Medical aid in dying allows us to see that caring for others in and through death stretches in many directions, some of which extend outward from the dying person. Moreover, this type of care is made possible through efforts of the terminally ill to control the dying process. These reversals of end-of-life care show us that care is fundamental to what it means to be human, and that care does not stop simply because one is dying.

All names in this article are pseudonyms.

Emily Thiessen is an illustrator and climate justice organizer living in Lekwungen Territories/Victoria, British Columbia. She holds an anthropology degree and has a fire for creative troublemaking. You can see her work at emilythiessen.ca.

Authors

Mara Buchbinder

Mara Buchbinder is associate professor of social medicine and adjunct associate professor of anthropology at the University of North Carolina at Chapel Hill. She is the author of Scripting Death: Stories of Assisted Dying in America (2021).

Cite as

Buchbinder, Mara. 2021. “Reversing End-of-Life Care.” Anthropology News website, June 23, 2021.

More Related Articles

Choosing a Journal Home

Ilana Gershon

Public Health Parasite

Melissa Salm