II. the Ethical Imperative for Access to Hospice Care
The nature of the care that dying patients and their families and loved ones receive is fundamentally a question of values and ends, not of technical details and means. It is fundamentally a statement about who we are as a nation and as a community, for our moral identity is nowhere better tested and tempered than in the respect and care we show to those in the twilight of life.
Diseases and frailty are essentially dis-orders of human being, involving physical, cognitive, emotional, social, and even spiritual aspects. They create discomfort and disability and may impair one's ability to lead a personally meaningful and desirable life. Diseases frequently cause profound personal, familial, and social consequences. Whether acute, chronic, or terminal, what we refer to as the patient's and family's "condition" represents the totality of their experience in reference to a disease.
It was medicine's failure to exercise its art in response to the patient's and family's condition that made the United States receptive to hospice. The preferences and values of most Americans are not always in synch with the aggressive life-prolonging treatment that mainstream medicine offers. Large public opinion surveys have for many years confirmed that Americans are concerned about the circumstances of dying and the end of life care they and their loved ones are likely to receive. Fear of loss of personal control, of being a burden, of being abandoned, and of suffering from unrelieved pain stand out among the most common worries. (14) As much as we want, we cannot suppress the question of what counts as a "good death" (or, perhaps more accurately, "dying well") and what counts as good care near the end of life.
Values in Care of the Dying
All cultures consider the period A when people are dying to have special significance, and America is no exception. Moreover, despite this country's tremendous diversity, research suggests that there is surprising agreement among Americans about what is important at the end of life. (15) The strongest message that emerges from this research is the importance Americans attach to maintaining their independence and having their personal values and preferences respected as they are dying. They want information about what is happening to them and what their options are. Many fear "being hooked up to machines" in circumstances in which their quality of life is low, but they are not anti-technology per se. Rather, they see decisions about the use of life-extending technology as a matter of balancing benefits and burdens, and they want to be the ones to do the balancing and to decide when it is time to forgo the benefit. Once it is clear that death is inevitable, most people would prefer to die at home rather than in a hospital.
Americans value compassion in their caregivers, in the sense of empathy--the ability to sense what a patient and family are feeling and act accordingly. The most important act of compassion health care providers can perform is the alleviation of pain and control of suffering in all its forms. What many fear most about dying is the suffering and loss of dignity experienced by persons in severe and constant pain.
Trust is of paramount importance. People want to be able to trust health care providers and the system as a whole to act in their best interests. They want to be able to trust the information they receive about their condition and their treatment options. They want to be able to trust the health care system to respect the decisions they make, or their families make, if they are no longer capable of decisionmaking.
People who are dying are often concerned with spiritual or existential issues and struggle to come to terms with the meaning of life in general and their own lives in particular. Some have an explicit faith in religion (organized or individual), and expect to be able to turn to it for support. Others may have a more generalized belief that the course of life and destiny are in the hands of a power or powers beyond human control. …