The Social Origins of Dignity in Medical Care at the End of Life

How do social forces constrain or foster dignity at the end of an individual’s life? Such a question rightly concerns individual patients, their families, and decision-makers beyond the circle of immediately affected people. A society in which people die in an undignified fashion must surely be concerned with this state of affairs. And a key measure of the credibility of any health-care system is surely the respect and dignity it accords to its most vulnerable patients, those who are dying. Unfortunately, numerous studies in the US document that many patients die prolonged and painful deaths, receiving unwanted, invasive, and impersonal care in the process. Surely this is undignified however dignity is defined. What is more, this type of care is not consistent with the care people themselves desire. Table 1 illustrates the discrepancy between people’s desires regarding their terminal care, and the outcomes that are actually observed. This is a sorry report card indeed. The gap between the care that is desired and the care that is provided is substantial and, at least in most cases, needless. For example, 40–70% of Americans die in pain, yet effective treatment for pain is widely available. This discrepancy threatens patient dignity in at least two ways. First, it is undignified in itself to die in pain or otherwise endure a bad death. Second, it is undignified to give patients a kind of care at the end of life that is inconsistent with their wishes. In a comprehensive, grounds-up study of how Americans define a ‘good death,’ involving the identification and assessment of 44 relevant attributes, one study found that patients identify a heterogeneous set of objectives, as shown in Table 2. The items on this list are noteworthy for their explicit statement of the importance of dignity, for their emphasis on metaphysical concerns near the end of life, and for their emphasis on specifically social aspects of good death—all of which are key elements of dignity.