By Amanda Anderson, a critical care nurse and graduate student in New York City who is currently doing a graduate placement at AJN two days a week.
Last weekend, 29-year-old Brittany Maynard died, in her bed, in her bedroom, with her husband and immediate family beside her. I learned of her death on Twitter, along with millions of other readers. Several weeks earlier, Maynard had publicly announced, in a YouTube video, the way she planned to end her own life: using a lethal dose of medications prescribed to her for that purpose.
Maynard, while a compelling public advocate, is not the first to choose to die this way. Compassion and Choices, the organization that worked with Maynard to publicize her choice, lobbies for the drafting and passage of “death with dignity” laws, which currently exist in some form only in Oregon, Washington, Vermont, New Mexico, and Montana.
In Oregon, where Maynard moved in order to be able to legally end her life before she was incapacitated by the effects of terminal brain cancer, approximately 71 other people made the same choice in 2013, the most recent year of reported data—the peak of a gradual increase from the law’s inaugural year of 1998, when 16 people did so.
Much social media discussion has arisen from Maynard’s case, often influenced by strongly held religious and ethical principles. For nurses, the issue can be further complicated by our own clinical experiences with death. Some have argued that legalized aid in dying opens a door to hasty, emotionally fraught, irreversible decision making.
Yet few commentators discuss other practices associated with hastening dying that are commonly practiced in our health care system, as described in a 2009 CE article in AJN by Judith Schwarz, “Stopping Drinking and Eating” (free until December 1). These practices include “foregoing or discontinuing life-sustaining treatment, including medically provided nutrition and hydration (such as tube feeding),” “using high doses of opioids to treat intractable pain,” and “initiating palliative sedation.”
Schwarz’s article focuses on the case of 100-year-old Gertrude, whose progressive loss of hearing and vision and her inability to complete activities of daily living had convinced her that she needed a plan to end her own life while she still could. Because she lived in a state where physician-assisted death was not a legal choice, Gertrude and her family enlisted the counsel of Compassion and Choices for knowledge of further options. Through a series of home visits and consultations, Schwarz assisted Gertrude and her family as they considered their legal options and arrived at the voluntary decision to stop eating and drinking.
What comes through in the article is that the process of deciding to initiate stopping eating and drinking is an arduous one that involves the entire family, medical providers, and even home help. In Gertrude’s case, she had to sacrifice her relationship with her long-time housekeeper on religious grounds, and her family had to make special arrangements with caregivers willing to respect her unique choice. In addition, Schwarz recommends that a nurse consult all other members of her health care team if asked by a patient about ways to hasten dying, and also suggests consulting mental health specialists to rule out clinical depression. It was also necessary to make sure Gertrude’s normal needs would be met in the course of the process.
On day four of her fast, Gertrude slept and “looked peaceful; her skin was luminous.” Her care continued as planned, including her beloved classical music, until day 10, when she died.
Brittany Maynard’s death differs in many details: she was young; her condition was acute; she hastened her death via a different mechanism, in a different legally approved way. But as with Gertrude, her decision to hasten her own death came with great thought and effort. Like Gertrude, she felt limited by her disease, speaking emotionally about the state of fear and pain her cancer placed her in, her autonomy stolen by her cancer’s “terrifying symptoms.”
After moving to Oregon, where physician aid in dying is legal under the state’s Death With Dignity Act, Maynard undertook the process of switching to a physician who would would provide care under the bill’s regulations. She also had to comply with Oregon’s rigorous criteria for the death with dignity program, including mandatory psychological screening for those with mental health diagnoses, multiple physician certifications, and a two-week waiting period before receipt of prescriptions.
And then, when she felt it was time to implement her choice, she had to do so voluntarily—in the environment she chose, facilitated by the support of her family, just as Gertrude did.
States where aid in dying is legal report that far fewer people make this choice than had been expected, with many of those who explore the option never filling prescriptions or, if they fill them, never choosing to use the drugs they’ve received. Maybe this has something to do with the healing power of knowing they are able to choose when it’s time to die.
Many people die as my patients sometimes do—in hospital beds, surrounded by their family members, as the intensive care team turns off their life support and nurses give ordered comfort care. Others die within moments of aggressive intervention, or while receiving advanced life support and CPR as specifically outlined by their advanced directives.
No health care provider or patient or family member takes dying lightly. There’s usually a lot of effort and thought and care involved for all concerned. Brittany Maynard’s case reminds nurses like myself that we should educate ourselves on every option so that we can speak to patients with compassion, regardless of their choices and our beliefs—in ways that are unbiased, informed, and protective of their rights, and within our scope of practice.