Jerika Bolen, a 14 year old from Wisconsin who suffers from type 2 spinal muscular atrophy, made headlines in July when she made the decision to end her life this fall by pulling the plug on her life-sustaining ventilator.1 The disease causes her constant pain and erodes all of her muscular ability. It is also fatal by mid to late adolescence, and she had been told that her pain would only increase in the years to come before ending in an inevitable death.1 Rather than endure this suffering, Jerika believes that a life after death would grant her freedom from her current pain. “I have been realizing I’m going to get to walk and not have this pain anymore and not have to, like, live this really crappy life” she said.1
In addition to ethical implications stemming from Jerika’s age, her decision also opens up a larger discussion on end-of-life decisions outside of euthanasia. Euthanasia is often a heated ethical issue, and Americans are deeply divided over it. Polls show that about half, 53%, of Americans believe that it is morally acceptable,2 and it is currently legal in only five states. However, conversations about end-of-life decisions rarely widen outside of euthanasia (physician-assisted suicide), to include ones like Jerika’s, which is a refusal of medical services that results in death.
Despite euthanasia’s high-profile nature, terminally ill patients have long chosen to end their lives by means other than lethal drugs. Some make decisions similar to Jerika’s, removing themselves from life-sustaining devices, while others choose palliative sedation, in which patients are medically sedated until death. Sometimes patients request that food and water be withheld during sedation, causing death by dehydration.
Perhaps discussion mainly focuses on euthanasia because it is more direct than other life-ending measures: the action to take lethal drugs is clear, and death comes quickly. Those who choose palliative sedation slip away in a matter of days, and there are no legal complications: no one is required to accept food or water, and death is inevitable if they choose to refuse it. The core issue, however, remains the same: in what case, if any, do terminally ill patients have the right to choose death?
Proponents of euthanasia claim that it is a more humane alternative to sedation. Though sedative drugs can be used to make a patient more comfortable, no one can be sure of how much a patient is able to feel while under their influence. An underlying principle is also at stake: proponents believe that a painless and intentional death should be available to those who feel that this world has caused them unbearable suffering.
On the other hand, proponents of palliative sedation view it as a more natural means of death. Sedation is a path often chosen when death is near, and sedation is simply a means of reducing discomfort and ushering in its arrival. It also does not carry the same risk of abuse, as is only available in truly terminal cases. Proponents argue that sedation upholds the principle of preserving life until it is no longer possible. Advocates of both means however, believe in a merciful answer to suffering at the end of life.
Jerika’s choice to end her life was one made under heartbreaking conditions, and one that will not easily be forgotten. It was not, however, without its share of public controversy and legal complications that must have added to her already-heavy burden. For her sake, and for others like her, it is the responsibility of society to continue dialogue that leads to ethical and legal decisions about what constitutes a compassionate end to life. This means opening up conversations to take a wide look at options beyond the often-discussed euthanasia to include palliative sedation, refusal of medical services, pain management, and other methods of easing suffering at the end of life. In doing this, we take a step towards securing a more just end for ourselves and those around us.
1 May, Ashley. “Q&A: What you should know about right to die.” USA Today, 8 Sep. 2015, http://www.usatoday.com/story/news/nation-now/2016/09/07/q-what-you-should-know-right-die/89959838/.
2 Swift, Art. “Euthanasia Still Acceptable to Solid Majority in U.S.” Gallup Polls, 24 June, 2016, http://www.gallup.com/poll/193082/euthanasia-acceptable-solid-majority.aspx?g_source=CATEGORY_HEALTHCARE&g_medium=topic&g_campaign=tiles.