Brain Tumors, Lethal Drugs, and the Art of Dying

Increasing enthusiasm for the controversial practice of physician-assisted suicide—when doctors give patients the tools to end their own lives—shines a spotlight on the perennial challenge of how to die well. Contemporary approaches to the art of dying must take into account the strengths and limitations of medicine today, the increasing use of medical capabilities to exert control over death, and our evolving cultural sensibilities.

In the United States, physician-assisted suicide is currently legal or decriminalized in ten states plus the District of Columbia. The legalization movement gained steam in 2014 with the case of Brittany Maynard—the outspoken young woman with brain cancer who commanded a strong media presence as she prepared to end her life and who remains to this day the standard-bearer for the cause in the United States. As various states consider legalizing physician-assisted suicide, Oregon health authorities went a step further in March by agreeing not to enforce the state’s residence requirement, thereby expanding access to physician-assisted suicide to all qualifying patients across the country.

Support for physician-assisted suicide has grown in recent years, including among people of faith. For example, a 2018 Gallup poll indicated that over 40 percent of Americans who go to church every week support legalizing the practice, up from 30 percent in 2005.

This trend raises important questions: should dying occur at home surrounded by loved ones, or in an institution, surrounded by healthcare practitioners? What is the proper role for medical technology? Does the relief of suffering justify—or require—eliminating the one who suffers? Do the sick have an obligation to hasten their deaths to relieve the burden they place on the living? If our responses are primarily guided by the medicalization of dying and notions of self-determination, we may lose sight of deeper, more timeless questions.

A Medieval Perspective on Dying Well

That is why the Ars moriendi (Latin, “art of dying”) provides such a helpful resource for thinking about dying well today. A Latin text written anonymously in the late Middle Ages during the aftermath of the Black Death, it draws on centuries of experience and traditional wisdom to provide a compass for navigating the dying process based on Christian theology. This handbook, which sparked a genre of art-of-dying literature in the West, circulated extensively in two versions—the longer original and a later abridgement—and was translated into most European languages at a time when physicians and clergy were scarce due to the devastating effects of the bubonic plague.

In broad terms, the Ars moriendi builds the case that living well is wrapped up in dying well, and vice versa. Virtue is critical to those approaching death, and its cultivation a lifelong process—not to be delayed until the end is imminent: “For this purpose, everyone would greatly benefit from having before their eyes the art of dying well—the focus of this work—and to reflect upon their own final illness.”

According to the Ars moriendi, the preparation for death is meaningful insofar as it is teleological, that is, directed toward the most final end—blissful union with God. The Ars moriendi commends five virtues as critical for attaining this end. The first three—faith, hope, and patience—are fundamental to the pursuit of God at the end of life because they anchor the dying person in the love of God amid interior struggles. The last two, humility and poverty, guard against the vices of pride and greed that may lead the dying person to reject God.

The Ars moriendi owes much of its popularity and appeal to its sweeping vantage point: it looks forward to the modern era in its focus on the subjectivity of suffering and dying, and it looks backward to ancient and medieval discourse in its pastoral instruction. Its message is refreshingly simple and focused on bare-bones realities: the inevitability of death, the need to prepare for one’s own eventual death by cultivating virtue, and the importance of support from loved ones and community as death approaches. For instance, the work recommends that the dying person identify “a devout, faithful, and suitable relative or friend who will reliably assist her at the point of death—to constancy of faith, patience, devotion, trust, and perseverance—by encouraging her, enlivening her, and faithfully saying devotional prayers for her as she suffers.”

With that in mind, it is helpful to consider two recent cases—both involving brain tumors—that challenge what it means to die well.

Two Contrasting Approaches to Dying

Brittany Maynard was in her late twenties, newly married, and hoping to raise a family when she discovered she had glioblastoma, an aggressive type of brain cancer. As her mother Deborah recounted in her memoir, Wild and Precious Life, Brittany was angry about her diagnosis and felt God had abandoned her. She investigated treatment options and quickly realized her illness would almost certainly be fatal. She asked her doctors about physician-assisted suicide—a practice not yet legal in her home state of California, but available to residents of Oregon.

Brittany underwent surgery to remove some of the tumor, then declined the standard chemotherapy and radiation treatments—interventions that likely would buy more time but also cause significant side effects. She considered hospice but feared a progressive decline with worsening symptoms. To her doctors’ dismay, she decided to move to Oregon to die. Her family helped her settle into a beautiful, two-story yellow house in Portland, where she enjoyed exploring local trails and parks with her friends. As her seizures and headaches worsened, she went up on her medications. On the date Brittany had set for her death, she went for a walk with family and friends, then returned home. The medication was prepared—a hundred capsules’ worth, dissolved in water. As Brittany sat on her bed, surrounded by her mother and husband, she took the medication and died quickly and quietly.

A few years later, another young woman, whom we will call Wendy MacGowan to protect patient confidentiality, faced imminent death from glioblastoma. Wendy was in her mid-forties, happily married and with an adolescent son when she received the same diagnosis. After undergoing chemotherapy and radiation treatments to delay the growth of the tumor, she decided to enroll in hospice to focus on comfort and quality time with loved ones. In the final days of her illness, she moved from home to a hospice facility for close treatment of worsening symptoms, which included severe headaches, nausea, and seizures.

In conversation with the hospice team, Wendy seemed at peace with the fact that she was dying and expressed gratitude for God’s goodness to her and her family. She said she was ready to die when the Lord takes her and looked forward to being with Him in heaven. When asked about symptom control, Wendy preferred an aggressive approach, even if it meant sleeping most of the time. Her husband, Colin, struggled over her decline and felt the need to speak with her more before he could let her go. To that end, Colin and Wendy worked with her doctors to develop a regimen of sedating medications that also facilitated significant periods of lucidity. She managed to have several conversations with her husband and son, and to receive visits from a chaplain, before she entered into the final stages of dying and quietly took her final breath.

The Art of Dying and Contemporary Challenges

These two women carried the same fatal diagnosis but chose remarkably different approaches to dying. At first glance, both women’s stories may seem consistent with the general ethos of the Ars moriendi—and, surprisingly, Brittany Maynard’s case even more so. In both situations, the dying person had come to terms with death, made preparations for it, and benefited from the near-constant support of loved ones. Moreover, in Brittany’s case, her death involved a greater degree of planning and attention to detail, and she took her last breath surrounded by loved ones in a carefully choreographed scene.

But the Ars moriendi helps us to see beyond logistical considerations and to make sense of these vignettes on a deeper level. As noted earlier, the Ars moriendi commends five virtues as critical for attaining union with God: faith, hope, patience, humility, and poverty. In line with this, Wendy demonstrated faith and hope for eternal life with God. She felt no need to hasten her death but demonstrated patience in waiting for “God’s timing.” She showed humility by acknowledging her indebtedness to God and committing herself to God’s will regarding life and death. She also showed poverty—in this sense, a willingness to part with the things of this world—by expressing her guiding desire to be with the Lord in the next life. For Wendy, both humility and poverty directed her toward the end of union with God. She and her husband were united in this aim, even if Colin needed more time than she did to come to terms with her approaching death. By contrast, and as Deborah’s memoir attests, Brittany did not die with the same equanimity or hope and instead chose to hasten her death.

Even if Brittany’s choice to end her life legally remains far from a dominant approach in America, it expresses a significant aspect of the modern project in its use of medicine’s tools to control death. An essential premise of this project is that a prolonged course of dying—with suffering that cannot be completely eliminated, however lessened—is unacceptable both to the dying individual and to her community. The dying patient may thus choose to end her life either to exert mastery over death or to relieve the inefficient burden she poses on her community.

But this modern approach to death lacks the teleological orientation the Ars moriendi commends—there is no clear goal or aim for what comes next, and those left behind have very little to console them and much to contend with. As the Ars moriendi attests, “Ever precious in the sight of the Lord is the death of his holy ones,” (Ps 116:14) and “Blessed are the dead who die in the Lord.” (Rev 14:13)

At the other extreme from Brittany Maynard’s approach is the possibility of spending one’s final days in the intensive care unit—perhaps on a ventilator, with intravenous infusions of medications working to keep the heart pumping and prevent other organs from failing. This also lacks a teleological orientation when it denies the reality of terminal illness and distracts the dying person and loved ones from anticipating and preparing for the mystery of what comes next.

In view of these poles, Wendy MacGowan’s path at inpatient hospice seems an important compromise. It is in keeping with natural law, the human creature’s partaking of the eternal wisdom of God, because it seeks to preserve life within the bounds of reason, rather than to take life or unduly prolong it. This is not arbitrarily proposed but meant to be a light for human flourishing. The medical and institutional aspects served the clear purpose of managing complex symptoms and supplying around-the-clock nursing support, but without the noise and bustle of an intensive care unit. Prior to her enrollment in hospice, she underwent the standard treatments for patients with glioblastoma—interventions meant to extend life expectancy and alleviate symptoms, but without expectation of cure. Wendy’s care at hospice was meant to ease, but not eliminate, her suffering in her final days.

Decisions to end one’s life, then, depend in large part on teleological considerations. If this life is all there is, and death is its ultimate end, then suffering poses a barrier to dying well. Since death is at any rate inevitable, it would make sense to hasten death. Such a perspective can be found in various end-of-life contexts, including hospice and palliative care. But for the person whose life is oriented toward deeper ends—that is, for the person who sees herself not as her own but as belonging to others, and even more so to God—that person is often more willing to bear momentary afflictions at the end of life, while awaiting hope of an eternal weight of glory. The Ars moriendi commends such an approach: “Note that as soon as the sick person perceives that she is tempted against faith, she should consider first how necessary faith is, since without it no one can be saved.”

In light of this reflection on the paths taken by Wendy MacGowan and Brittany Maynard, the successful incorporation of the art of dying into the contemporary context requires a careful balance—maintaining traditional wisdom and, when appropriate, applying medical capabilities to support the dying person without causing disruption and harm. With this perspective in mind, the growing number of Americans who support legalizing physician-assisted suicide may be losing sight of what the art of dying is all about.

Clarification: Neither author was personal physician to Ms. Maynard. All information in this article about Ms. Maynard is from publicly-available sources, including her mother’s memoir.