UChicago PULSE Issue 6.3: Spring 2020

Page 24

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

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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


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