Choosing to Live, Choosing to Die: The Complexities of Assisted Dying

All of us are mortal. How and when we die may be a function of genetic inheritance, accident, disease, or geopolitics, but the certainty is the same for everyone. However, in the last century, advances in medical technology have prolonged life in ways previously unimagined, leaving family, medical support teams, and often, an individual him/herself with very difficult choices: can or should life be extended beyond what might reasonably have been expected? Is someone who is being maintained by life support technology, or who is in unremitting pain, or who is in the throes of advanced dementia living a life that has some quality, some meaning? These difficult questions of death and life are explored in the 11 chapters of Nikki Tate’s Choosing to Live, Choosing to Die: The Complexities of Assisted Dying.

These questions are often mere abstractions until the health of a spouse/partner, a family member, or a close friend forces us to confront them. In the book’s first chapter, Tate begins with two very personal accounts. The first is the story of her grandmother’s end-of-life struggle with terminal liver cancer. Racked with pain, pleading to be allowed to die, Tate’s grandmother’s pain level had moved beyond morphine management. During her final hospital admission, she refused food and water and tried to tear out her IV drip. The family and the medical team concluded that she was ready to die, and so she was given a large dose of a Brompton’s Cocktail, a mixture of analgesics and sedatives, powerful enough to hasten death, with minimal pain. Years later, Tate’s mother was diagnosed with Pick’s disease, a rare type of dementia. “Long before my mother became ill, she told me that if she ever developed Alzheimer’s disease I should take her into the woods and shoot her. If I had actually shot my mother as she had asked, perhaps I could have argued that the act was an assisted suicide – even though I had pulled the trigger.” (p. 22)

One of the arguments in favour of MAD (medically assisted death) is the real possibility that a desperate person will attempt suicide and be unsuccessful, leaving that person in a state of irreversible injury. What are the choices for someone who wants a death that is peaceful and painless? Tate describes the options, along with both the positive and negative aspects of each. Some people make a conscious choice to end their lives, and they have reasons: the fear of being a burden to others, the loss of independence, fear of and a desire to avoid extreme pain, a lack of hope coupled with fear and uncertainty, or profound anxiety at what ongoing life might hold for them. For centuries, death often occurred at a person’s home, but now it is more likely that one will take place in some type of institution, such as a hospital or a care facility (i.e. a nursing home or palliative care centre). If that facility is affiliated with a particular religion, end-of-life choices might be restricted or unavailable. And it’s not just the elderly who face end-of life decisions; children under the age of eighteen also experience terminal disease, and there can be a disconnect between their wishes and those of their parents.

End-of-life decisions are rarely easy to make. In the chapter, “Consider the Context”, Tate explores the legal, ethical and moral aspects of the issue. She poses the question, “What happens if medical assistance in dying is the only way to relieve pain and suffering when a terminally ill patient asks for help in speeding the arrival of the end?” (p. 38) It’s difficult, although the availability of supportive palliative care and hospice care can make pain more manageable, both for the patient and the family. Discussions about death are often very distressing and emotional; the chapter entitled “The Language of Dying” deals with the many ways people use to “find[ing] the right words” (p. 52) to describe the routes to the end of life. Then, there is the law. There are those who would agree with Supreme Justice John Sopinka that “the active participation of one individual in the death of another is intrinsically morally and legally wrong.” (p. 56) It is certainly possible that legalizing assisted death may open the doors to abuse whereby someone with an interest in the death of another may take advantage of that option. And, when does medically assisted death become medically assisted murder? Countries which have passed laws allowing individuals to have access to both medically assisted death and active euthanasia have had to grapple with these questions, and there is a definite awareness that there are always grey areas.

There are medical, legal, religious, moral, and ethical issues with which to struggle. At the same time, there are individuals and groups who have become activists in the “right-to-die” movement, including several Canadians who have become well known for their advocacy: poet Al Purdy, Sue Rodriguez, and Lee Carter, (who took her “right-to-die” case to the Supreme Court of Canada). Dr. Ellen Wiebe, a Canadian physician, has challenged the right of care institutions to deny medically assisted death to those patients who have requested it, even if the institution in which a patient is living is firmly against the practice.

What happens when someone’s mental state makes it difficult to think the decision through? An individual may have dementia, Alzheimer’s, severe depression, or just be completely overwhelmed by pain and despair. “When someone is overwhelmed with pain and suffering, when are superhuman efforts to save a life justified? When are they misguided?” (p. 106) Nikki Tate is a rock climber, and she acknowledges that this is a risky activity, especially for a mother who could leave a child to survive her, should she experience a fatal fall. Some rock climbers have had catastrophic injuries, leading them to suicide, and others overcome such injuries, embracing them as a new challenge. Other challenges faced by individuals include chronic physical conditions and serious mental illness. What prevents or compels individuals to search out end-of-life solutions?

Nor is it easy for parents or families who have children, parents, or relatives with profoundly severe medical conditions, especially if the patient is incapable of making a decision for him or herself. The case of Robert Latimer, for whom the suffering of his severely incapacitated daughter led him to kill her, or the case of Terry Schiavo (whose parents and husband disputed whether or not she should be disconnected from a feeding tube) both underscore the dilemma of families caught in terrible situations. Tate also details the story of her own mother’s decline, becoming “an infant living in a sixty-two year old’s body.” (p. 131) Meaningful life activities were no longer possible. And, although Tate knew that her mother would not have wanted to continue to live, there were no legal options, either for her or for her family. It is clear that the situation continues to haunt Tate.

Another aspect of family history also troubles the author. There is real concern that the availability of medically assisted death can be used against vulnerable and marginalized groups, such as the disabled. Tate’s mother was a baby in Nazi Germany and infantile polio left her partially paralyzed on one side of her body. Her grandmother was made to sign a paper stating that, if Tate’s mother’s brain was afflicted, the baby would be euthanized. It was part of Nazi Germany’s policy of eugenics. Tate’s mother recovered, but the situation heightened Tate’s awareness of the potential for abuse.

The final chapter of the book focuses on “A Good Death” and the ways that it can be enacted. North America is a death-denying culture, but failing to acknowledge its reality is living in denial. There’s a need for death midwives, death cafés, or other ways to make the reality of death, a part of the reality of life. Tate ends her book by stating that “I’ve always tried to live well, to be content, to love and look after those closest to me, but now I am also thinking about how important it is to die well too.” (p. 159)

For most readers of the book’s intended audience, death is something far off in the distance or something that happens to “older people”, such as their grandparents. But the truth is, no one knows when the end will come. A 14-year-old may contract cancer, or a sibling or parent may be the victim of a horrible accident, and then, the dilemmas are very real and unavoidable. Tate’s book blends her own personal experiences with the complexities of the emotions and realities faced by anyone who has to face the complexities of assisted dying, and she presents these complex questions in very accessible prose. Pull quotes, captioned photos of individuals prominent in the right-to-life and right-to-die movements, “end-of-life facts”, vignettes, case studies, and family photos of her beloved grandmother and mom, all add texture and meaning to a highly emotional issue. Each chapter begins with a quotation highlighting the issue under discussion, and facing that quotation is a drawing, rendered quite simply in black and white and grey tones (appropriate for the subject matter). A “Glossary” provides a comprehensive list of all bold-faced terms used in the book, and the “References” list offers print, online, and multimedia resources for further perusal, should the reader choose. I think that an index would be a helpful addition, especially for students looking to reference a specific case or individual.

My only issue was with some of the illustrations. It can be hard to strike an appropriate gender and ethnicity balance, but many of the “doctors” were male, and there could have been more ethnic diversity amongst the drawings of patients and family. Several times, the “religious” figures depicted were Roman Catholic nuns, wearing “old school”, pre-Vatican II habits. Given the diversity of Canadian society, perhaps other spiritual leaders – elders, imams, rabbis – might be featured. However, this is a small quibble, and, as I reviewed the book from an Advance Reading Copy, perhaps the final version might reflect change.

Choosing to Live, Choosing to Die: The Complexities of Assisted Dying is definitely a book that has a place in Grade 9-12 library collections. Medically assisted death will undoubtedly be a popular topic for classroom projects, essays, and debates. Tate doesn’t pretend to have all the answers, and she does an excellent job of posing many questions for consideration. Importantly, the author encourages her audience to participate actively in their reading of the text: “As you read, consider what you think and feel about this issue. Have conversations with other people and listen with an open mind and a kind heart to their opinions. Not everyone will agree with you, and that’s okay. Dying may be a universal experience, but it’s also a deeply personal matter; each death is as unique as the person’s life that came before.” (p. 9)

Living is an active experience, and so is dying.