The goal-directed approach acknowledges that death is an inevitable part of life and assumes that we all want the best death possible, given the uncertainties that nearly always accompany it. Since a good death is a universal goal, it should not be a taboo subject. In fact, conversations regarding end-of-life preferences should begin early in adulthood and continue off and on through the dying process.
The National Academy of Medicine has defined a good death as “one that is free from avoidable distress and suffering, for patients, family, and caregivers; in general accord with the patients’ and families’ wishes; and reasonably consistent with clinical, cultural, and ethical standards.” And the well-known medical ethicists E. J. and L. L. Emanuel have proposed six categories of modifiable factors that may contribute to the quality of the dying process: 1) physical symptoms, 2) psychological and other mental factors, 3) economic and care giving needs, 4) social relationships and support, 5) spiritual beliefs, and 6) hopes and expectations. The relative importance of these factors varies a great deal from person to person and situation to situation.
Some end of life preferences can be expressed on standard legal forms. While the rules vary somewhat from state to state, all of them provide the opportunity to complete some sort of advance directive for health care, what is often referred to as a “living will.” Since you don’t know when death will come, every adult should strongly consider completing one of these documents. In fact, advance directives are more important for younger adults whose deaths are more likely to create controversy.
Most advance directive documents allow you to document whether you would want to be resuscitated (1) if you had a terminal illness and were expected to die with or without resuscitation within 6 months or (2) were in a persistent coma. Many advance directives also ask about whether you would want to be fed through a tube or intravenous catheter. That becomes especially important in several U.S. states, which have decided that providing food and fluids is part of basic supportive care and therefore required unless there is a specific directive stating otherwise. Advance directives also make it possible to designate a surrogate decision-maker in case you are unable to make decisions for yourself. In many, if not most cases this may be the most important part of the document but only if that person knows about your goals and preferences.
All states also allow you to create a durable power of attorney (DPOA) for health care, in which you can specify who you want to make health care decisions for you if you are unable to speak for yourself. Unlike a regular power of attorney, a DPOA remains in effect after you have been declared incompetent to make decisions for yourself. Reminders, educational materials, assistance, and documentation of these legal expressions of your values and preferences ought to be provided and promoted in all primary care practices.
As important as they are, formal advance directive documents are nowhere near as important as the informal discussions you should have with close family members and your primary care physician. In my experience, the decisions that have to be made near the end of life rarely fall into the simple categories covered by advance directive forms. If you are still able to make your own decisions right up until your death, things are much more likely to go the way you want them to. But if you are not, responsibility will fall to surrogate decision-makers – family, close friends, doctors, or ethics committees. If your goal is to have a “good death” as you define it, you need to make sure those folks know your values and preferences.
Information about how to facilitate these conversations can be found at http://www.dyingmatters.org/page/resources-talking-about-death-and-dying and in the “Five Wishes” section of the “Aging with Dignity” website (www.agingwithdignbity.org). There is also a wonderful game families or friends can play called “My Gift of Grace” (www.mygiftofgrace.com), developed at the Pennsylvania State Hershey Medical Center, which can help both you and your potential surrogate decision-makers discover your (and their) values and preferences about end-of-life care.
A variety of more general, non-legal documents have been created to help you think about your values and preferences more generally. One example is the Values History developed at the University of New Mexico: (http://c.ymcdn.com/sites/www.hospicefed.org/resource/resmgr/hpcfm_pdf_doc/valueshistoryform.pdf).
When asked how they would prefer to die, nearly everyone says “in my sleep.” That sort of death is most likely to result from a heart attack or stroke. Therefore measures to reduce the risk of a heart attack and stroke will reduce the probability of dying in ones sleep. There is no simple solution to this dilemma, but it is worth talking about with your physician, particularly if life expectancy is otherwise short.
Even more challenging choices must often be made when faced with a life threatening condition like cancer. Atul Gawande, in his book Being Mortal, does a wonderful job of explaining and suggesting ways to address these difficult choices. For example, he suggests that people who are dying should consider four questions: 1) What is your understanding of the situation and its potential outcomes? 2) What are your fears and hopes? 3) What trade-offs are willing and unwilling to make? and 4) What course of action best serves this understanding?
The balance between relief of physical symptoms and preserving the ability to think is often an issue at the end of life. In most cases, it is an issue that can be discussed when the time comes. But it may also be helpful to have thought about it ahead of time and to have discussed your thoughts with your doctor and family members.