IX. Dying,self-determination,and the (im)possibilities of a “good death”

I came of age as a feminist understanding how important it is that women can make choices about their bodies and that they need to be wary of attempts to usurp this right, including on the part of—sometimes well-meaning—physicians, welfare bureaucrats, and lawmakers. The second thing I have learned from feminism is to be sceptical of modernist discourses which lull us into believing we can have perfect bodies (with a little surgery), turbo minds (thanks to cognitive enhancement), designer babies (reproductive technologies), or the elimination of all sadness or despair (long live valium and anti-depressants). It seems we have forgotten that frailty and death are features of life—features that need to be met head-on rather than anxiously avoided or denied. And, finally, I have been encouraged through feminism to think relationally, to realize that we are not completely autonomous, but rather social beings whose lives are entangled with the lives of others, families, friends, partners, lovers.

I come from a family where the women at least grow to be very old—well into their eighties or even nineties—but suffer the last 10 years in a state of fairly extreme dementia. One of my most poignant memories was of visiting my much-loved grandmother in a nursing home, where she had been living for many years. She couldn’t speak, nor did she recognize me. She sat quietly on her bed, staring into space. At one point, she looked at me and said, “Can’t you …. Can’t you…. Can’t you just…” and she raised her hand and pointed her finger at the side of her head as though it were a gun, flicking the imaginary hammer and whispering, “Pow.”

I remember how sad and helpless I felt. Afterwards, I had many conversations with my mother in which we agreed that we never, ever wanted to find ourselves in the kind of situation in which my grandmother was. My mother, a pharmacist, used to explain in great detail how she planned to end her own life before she got that far. After doing some research, she came up with what was for her the best solution—tidy, effective, and something she could do herself. Unfortunately, her efforts were in vain. She came down with an unexpected attack of cerebral meningitis. While she—amazingly—survived the meningitis, her cognitive capacities were dramatically diminished. I watched her emerge from the hospital, confused and frightened, and continued to see how she lost everything that had made her the person she had been: her love of classical music, her voracious reading, her delight in discussing politics and movies, and even her passion for watching baseball games on TV. She lived on, however, growing ever more bored and unhappy, but unable to help herself. In the final weeks of her life, she was constantly terrified by hallucinations, agitated, and looking in panic for her mother. She died of what was euphemistically referred to by her health care professionals as “old age,” surrounded by family members who she no longer recognized.

So, here I am, more determined than ever that this is not going to be the end of my life. I want to be able to decide when I am ready to go and how I want to do it. I want to be the one to judge what my quality of life standard is—not being able to read and wipe my own bottom, being on the top of my list. Since I live in the Netherlands, where active euthanasia has, unlike the parts of the US where my grandmother and mother lived and died, been a legal option for many years, I have until recently assumed that making my own decision about how and when to die would be a real possibility. However, recent events—both personal and public—have led me to question this assumption.

Euthanasia—despite the widespread image that this is easy in the Netherlands (some would say too easy; many US Americans believe that we lead our aged and infirm off to slaughter)—is not nearly as common as one might imagine. About 4000 people actually underwent euthanasia officially in 2012, the most recent year for which statistics are available (Regional Euthanasia Review Committees, 2012). It is not at all easy to get. Two-thirds of the requests for euthanasia that are put to doctors are refused (Netherlands Ministry of Foreign Affairs, 2010, p. 6). Euthanasia is regarded as a medical matter, something that requires the approval of the physician treating the patient who determines whether the decision meets a series of requirements set by law, including that a second, “independent” physician has agreed to it. Euthanasia is, in short, not something a person does on her or his own or together with family members and friends. Even if a person has gone through all the steps required to obtain euthanasia, including getting the approval of two physicians, finding a GP willing to “do” it, and setting out all of the conditions under which she/he wants to die in writing, she/he may still hear—as did a terminally ill friend of mine recently who made it clear that he really, really wanted to die—that he was “still too good” and would “have to wait a little longer.” In other words, it was not my friend’s belief that the moment had come, but rather the GP’s reluctance to initiate the process before—in her view—absolutely necessary was what prevailed. This meant additional (and excruciating) suffering for him, but also for his partner who had to sit by helplessly as he begged her to “please, please help me.” Given that euthanasia is regarded as a medical matter, the ethical debates in the Netherlands have centered around the problems physicians have in performing euthanasia rather than a person’s right to end her or his own life when and how she/he sees fit. Because euthanasia has been personally difficult for health care professionals in practice, many prefer palliative sedation, which means in practice ensuring that patients take enough pain medication so that they will not suffer and when they are estimated to be with two weeks of dying bringing them into a comatose state, in which they neither drink nor eat, and, after about a week, die “naturally.” Palliative sedation occurs in 12% of the deaths as opposed to 2.5% of the cases of “active euthanasia” (Van der Heide, Brinkman-Stoppelenburg, van Delden, & Onwuteaka-Philipsen, 2010).

The situation is more complicated when it comes to dementia. Dementia is treated as a special case, because the patient may no longer be able to indicate that she/he is ready to die. This was dramatically illustrated by a case several years ago concerning a 64-year old woman who was diagnosed with Alzheimer’s in 2004 (Sheldon, 2011). She was very concerned about being able to end her life with dignity and during the early stages of the disease, she regularly discussed her wish to have euthanasia with her GP and family. She made a “living will” while still competent, writing down what the limits were for her (being able to recognize her children and not having to be admitted to a nursing home), and making sure that all her family members were on board with her decision. When the time came (in accordance with her expressed and written wishes), her GP asked for a second opinion as the law requires, but this physician was unable to sign off on euthanasia because the woman could not say unambiguously “I want to die.” He, therefore, denied the request. The husband was frantic, informing the GP that he was determined to respect his wife’s wishes and if the GP refused to help, he would do it himself. Worried about the husband embarking on an illegal course of action, the GP sought another second opinion, found a physician who did agree that the criteria for euthanasia were fulfilled, and, eventually, helped the woman by terminating her life. A controversy ensued within the Netherlands about this case, whereby the central point of concern seemed to be not whether a person has the right to end her life, but whether a physician should perform euthanasia on someone who may have “thought she wanted to die at an earlier point in her life,” but may have changed her mind (sic.) later. As one policy advisor put it, “Just saying you want to die one time is not enough for a well-considered euthanasia request” (Sheldon, 2011).

Obviously, this is no help at all for someone like me (or my mother or my grandmother) who has strong feelings about how she wants to die and little confidence that the medical profession will be on her side when she is ready to do so. She can make a “living will”—known in other countries as an “Advance Decision” or “Advance Directive” (see Wilkinson, 2015)—but this will not ensure that it will be followed if she is not in a position to clearly and repeatedly make her wishes known. Without a clear endorsement by the medical profession, policy makers, and the legal system of the individual’s right to determine how and when she wants to die, she is left in the position of having to take matters into her own hands. This explains why many people—myself included—are considering the very real possibility that they may have to act while they still have the mental capacity and physical ability to do so, because they can’t count on people helping them later when they’ve lost that capacity. In other words, one is forced to give up what may be some good years of life in order to ensure that one can die with dignity.

How might feminism help us to think about this?

Obviously, first and foremost, feminism has reiterated the importance of difference and realizing that people have different needs, experiences, and desires. This means at the very least that no policy will ever fit each case. The best policy measures are, therefore, those that leave enough flexibility to take in the particularities of the specific case.

Second, end of life decisions should not be monopolized by health care professionals. We’ve definitely been down this road before—I am thinking about the feminist health movement, its long-standing critique of the medical profession, and the importance of de-medicalizing ordinary processes of life and death. As long as a person is capable of deciding when she wants to die, this is something she should be able to do herself, having been given sufficient information about how to do it effectively and without unnecessary trauma. The ethical debates that have influenced current policy in the Netherlands place responsibility in the hands of the medical professionals and patients have come to expect that it is the medical profession that should help them. As a feminist, I have learned to be sceptical of measures that undermine my agency, but also of my own laziness about leaving hard decisions to others. For me, support groups—like, for example, “Uit Vrije Wil” (Of Free Will) in the Netherlands—for individuals interested in ending their lives when and as they choose are the way to go here, not circuitous, bureaucratic and, ultimately paternalistic trajectories through the medical system.

Third, dying is not something you do alone. For me, a “good” death would mean not compelling my partner to care for me in a situation which I would find demeaning or which would go beyond his own capacities to do so. It is important to me how I am remembered by the people I love. I do not want the person who has been my lover, my soul mate, and my life-time companion to have to stand by as I deteriorate, physically and mentally, ultimately becoming a person he cannot recognize. Nor do I want to cling to a semblance of the life which is hardly worth living until the very last possible moment by making use of the medical technology available for prolonging life at all costs. Instead, I would like to take leave of my life with as much dignity as I can muster, and, if possible, at a moment of my own choosing and together with the people I most care about.