Living Long in Fragile Health: The New Demographics Shape End of Life Care

Abstract

Not long ago, people generally got sick and died--all one sentence and all a few days or weeks. end of life had religious, cultural, and contractual significance, while paid health care services played only a small part. Now, most Americans will grow old and accumulate diseases for a long time before dying. Our health care system will cleverly supplement body's shortcomings, making it possible to live for years in valley of shadow of death, fearing not only death but also all sorts of evil from regular dysfunctions of our health care and social systems. In a sense, great success of modern medicine has been to transform acute causes of death into illnesses. Mostly, we do not spend much time or money on cures--these are quick and cheap when they are available at all. Instead, health care now involves substituting better conditions and helping people to live with implacable illnesses, a few of which are stable and many of which are progressive but not life-threatening. However, each of us eventually lives with a set of conditions that are, taken together, progressively worsening and eventually fatal. This is a very different way of coming to end of life from that of the old days, when people died childbirth, of occupational hazards, of periodic epidemics, and with first heart attack. In 1897, Sir William Osler's Principles and Practice of Medicine noted that usual adult hospitalized with diabetes would within a month. Things have changed so much that today we don't really have language, categories, and stories to help us make sense of our situation. One hears people say, He's not dying yet, of a person living with fatal lung cancer. Generally, that means he's not yet taking to bed, losing weight, and suffering from pain, as would be expected when dying is all that he can do. But category is used as if one is either temporarily immortal--which is usual state of human beings--or dying, which case person is of a different sort, having different obligations and relationships. The Dying are expected to do little but wrap life up and go. But this dominant myth about dying does not fit many people. Many elderly people are inching toward oblivion with small losses every few weeks or months. If our language does not accommodate new reality, it is not surprising that our shared social life has not yet taken up challenge. characters on evening television are cracking jokes while dealing with Grandma's wandering and incontinence. movies show accommodations needed to live with advanced emphysema. As a patient once told me, No one Bible died like this. People find little guidance when they look to our ancient texts for comfort and advice on how to live while walking a tightrope of serious and frailty, propped up by modern medicine. That lack of social understanding also shows conceptual apparatus we have used trying to bring reform to what happens last part of our lives. Remarkably, we have used language of decision-making and law more often than that of spiritual journey and psychological meaning. In 1970s, issues were framed as the right to die or the right to choose. work of President's Commission on Ethical Problems Medicine and Biomedical and Behavioral Research marks a transition to language of foregoing life-sustaining treatment. At that time, widespread reaction to suffering inflicted on patients by cancer treatments and to mainstream medicine's inattention to physical pain led to only widely adopted change health care delivery last half of twentieth century--hospice programs. Half of Americans use hospice at least briefly before dying. However, most of time spent living with serious illnesses that will end death is spent not hospice care, but indistinct zone of chronic illness that has no specific care delivery system. …