DECIDING HOW TO DIE

By MILES KAUFMAN ALLISON GENTRY

At the end of your life, do you know how you want to die? Do you know if you want extreme measures taken to save your life? What measures would you consider to be extreme? Would you want to die in the hospital or in hospice? These questions are not easy to answer, and they’re definitely not easy to ask—especially to those who are terminally ill. But without asking these questions and making these challenging decisions, many patients receive end of life care they never would have wanted.

A patient who is terminally ill is not expected to recover, and the quality of their life until the end can vary greatly and is somewhat unpredictable. Some terminally ill patients may be active for a long time before becoming incapacitated while others will deteriorate very quickly. 1 This inevitable infirmity results in many patients becoming too ill to make their own medical decisions before they intended, leaving their care in the hands of loved ones. The emotional toll of watching a loved one die slowly and painfully can be traumatic, as can having the choice to refuse treatment on their behalf. That is why an advanced directive—a legal document that sets forth a medical plan in case one is unable to make medical decisions—is so important.

Physicians have the opportunity to suggest that terminally ill patients create advanced directives and counsel them through various decisions that follow. It has been shown that when people understand their possible outcomes of their illness, they have less anxiety about their disease. 2 Most people agree that living is more than being alive, and that patients should decide what medical care they believe will help them live and which treatments they consider too extreme. Although conversations about death are hard, by asking a patient what tradeoffs they are willing to make and counseling them through these painful choices, a doctor can ensure that end of life care matches that patient’s values, and lower the percentage of people who receive excessive or unwanted medical treatment at the end of their life, a fate which currently befalls 25% of patients. 2

For end of life care, there are typically two choices: palliative care and hospice care. Hospice is usually reserved for patients who have less than an expected six months of life left, and the primary focus is on comfort. Hospice care is typically provided in the patient’s home or in an assisted living home. These patients receive medicine to alleviate symptoms and pain, but no treatments are prescribed. With palliative care, on the other hand, comfort care happens alongside curative treatments, which are provided in a hospital. Unless otherwise specified by the patient or their family, palliative care tends to be the default type of treatment for terminally ill patients. 3

In these medical settings, much can be done to keep a dying person alive. The development of technology like ventilators and dialysis machines have allowed the global life expectancy to double since the turn of the century. 4 These medical advances have also lengthened the lives of the terminally ill, which has also lengthened the process of dying. Sick patients sometimes spend weeks or even

months in the “pre-active phase of dying,” where patients often stop eating, and become lethargic or increasingly restless. 5

All of our lifesaving technology has saved many, but how does one decide when to stop saving a dying person’s life and let them go in peace? The answer is highly contested. Some countries like the Netherlands allow doctors to end the lives of terminally ill patients. In the US, physician assisted death was ruled constitutional by the Supreme Court in 1997 and is legal in 9 states. 6 Despite legality, many doctors including Ezekiel J. Emanuel, a prominent oncologist and bioethicist, oppose physician assisted death, because they believe that those patients want to die due to their depression and fear of suffering more so than their actual illness. 7 The other 57% of physicians in the U.S. support physician assisted death because they believe that someone who is terminally ill should not be forced to suffer a painful end if they choose otherwise. 8

Between 1997 and 2018, 2,817 patients chose to end their life via physician assisted death — a microscopic percentage of terminally ill patients. 9 Given the ethical dispute and inconsistent legality, it comes as no surprise that most patients don’t think of physician assisted death as a feasible option. However, one option that many patients do consider is the choice to refuse treatment. In the case of many terminally ill patients, they are no longer able to make their own medical decisions and that responsibility falls on a family member or a court appointed health care surrogate.

Death may be a part of life, but nevertheless facing your own mortality is challenging. Decisions about if or when to refuse medical treatment are hard to make. Given the unpredictable progression of a terminal illness, advanced directives become even more imperative. Given the variety of options available and complexity of these decisions, doctors need to be initiating these discussions with terminally ill patients. By creating advance directives with terminally ill patients, we can ensure that all patients are given end of life care that aligns with their values.

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9. “Definition of Terminal Illness.” Marie Curie Charity, 1 Apr. 2019, www.mariecurie.org. uk/who/terminal-illness-definition. Kalanithi, Lucy, director. What Makes Life Worth Living in the Face of Death. YouTube, TEDMED, 16 May 2017, www.youtube.com/ watch?v=6VacgRdKqjM. Center for Hospice Care. Know the Difference -- Hospice vs. Palliative Care. Center for Hospice Care Southeast Connecticut, www.hospicesect.org/hospiceand-palliative-care. Roser, Max, et al. “Life Expectancy.” Our World in Data, 23 May 2013, ourworldindata. org/life-expectancy. Signs and Symptoms of Approaching Death. Hospice Patients Alliance, hospicepatients. org/hospic60.html. “Physician-Assisted Suicide Fast Facts.” CNN, Cable News Network, 1 Aug. 2019, www.cnn.com/2014/11/26/us/physicianassisted-suicide-fast-facts/index.html. Emanuel, Ezekiel J. “Why I Hope to Die at 75.” The Atlantic, Atlantic Media Company, 16 Apr. 2018, www.theatlantic.com/ magazine/archive/2014/10/why-i-hope-todie-at-75/379329/. Chamie, Joseph. “Assisted Suicide: Human Right or Homicide?” YaleGlobal Online, Yale University, 9 Aug. 2018, yaleglobal.yale.edu/ content/assisted-suicide-human-right-orhomicide. ProCon.org. “State-by-State PhysicianAssisted Suicide Statistics - Euthanasia - ProCon.org.” Pros & Cons Of Current Issues, ProCon.org, 28 Jan. 2019, euthanasia. procon.org/state-by-state-physician-assistedsuicide-statistics/.