"It's not that I'm afraid to die... I just don't want to be there when it happens." -- Woody Allen, Without Feathers
Over the centuries healers have been called upon to palliate, or "make better," myriad afflictions. Only in recent times has the notion arisen that our primary goal is to identify and cure diseases, thereby prolonging life and, presumably, preventing distressing symptoms and associated suffering. The medical advances made in recent decades are indeed so astonishing that one could almost forgive those who would hope that a cure-based medicine might eliminate scourges such as pain and the debilitations of old age. However, we remain mortal. I recall a scene from Bernado Bertolucci's film Little Buddha in which a child sits with a wise, old monk looking out over a bustling city in Nepal. "What is impermanence?" asks the child. The monk answers, "See these people. All of us and all the people alive today. One hundred years from now we'll all be dead. That is impermanence." Intellectually, I understand the truth of this statement. However, that more than 6 billion people will die in a period of 100 years is beyond my comprehension.
That people die is nothing new. Illness and death have always been part of human experience. Ancient people were plagued by chronic debilitations often associated with parasitic infections.1 Egyptians in the time of the pharaohs, for example, frequently suffered from schistosomiasis, resulting in chronic pain and weakness. However, how we get sick today and how our society responds to sickness has changed radically. As the nature of illness has changed, so too has dying.2-5 In 1900 the top five causes of death in the United States were respiratory infections (influenza and pneumonia), tuberculosis, gastroenteritis, heart disease, and stroke, in that order.6 With the exception of tuberculosis, most other deaths were relatively sudden, occurring over a few days of illness. In 2000 the top five causes of death in the United States were heart disease, cancer, stroke, chronic obstructive pulmonary disease (COPD), and accidents.7 With the exception of sudden heart attacks and accidental deaths, most of these deaths were due to prolonged, chronic illnesses. While significant differences remain between developed and developing countries in terms of causes of death, the trend seems irreversible: illnesses and deaths associated with infectious and parasitic causes are on the wane, and chronic, degenerative illnesses such as cancer and dementia are increasing. (HIV disease is a sad exception.) In 1990 it was estimated that for every death due to cancer worldwide, two deaths occurred due to infectious and parasitic causes. By 2015 this ratio will be one-to-one.8
Dying of cholera or some other horrible gastrointestinal scourge seems a very unpleasant way to go. However, because we remain mortal, to prevent one way of dying is, in effect, to "create" another. Even very good things like seatbelts are "carcinogenic" in that by decreasing the chance of dying in car accidents, seatbelts proportionately increase the probability of growing older and dying from other diseases such as cancer. That we are more likely to die of chronic illness at an advanced age is not such a terrible thing, considering the alternatives. However, we must take responsibility for these new forms of illness and associated dying.
This book has an unavoidable bias based on my experience practicing palliative care in the United States. I hope this perspective is not entirely irrelevant to people in other parts of the world who are struggling with illness, death, and suffering. Each society and culture will have its particular issues and challenges. For developing, often impoverished, countries, simply increasing the availability of oral morphine for patients dying of cancer or AIDS may be an overwhelming challenge. Developed countries may be struggling with complex social forces that result in the warehousing of their sickest and dying members in dehumanizing institutions far from family and friends. Despite the great social, cultural, and political differences that divide the globe, I would argue that we have more in common than not. These dramatic changes in how we experience illness and death affect virtually all of us. While we may find guidance and strength in our cultural traditions, I think none of us can rely on old ways of "doing" illness and dying. Cultural traditions related to illness and healing evolved slowly over millennia and are resistant to change. Civilizations developed elaborate ways for dealing with illness. However, as recently as 50 years ago, few people lived to an advanced age. Virtually nobody experienced prolonged states of severe incapacitation and dependence. For most, dying was a brief affair, usually lasting a few days and requiring simple acts of kindness from family and friends.
It is safe to say that our new ways of becoming ill and dying have swamped our cultural coping mechanisms. We are simply unprepared for the vast numbers of people in both developed and developing countries who will succumb to diseases such as cancer, AIDS, and dementia. We must create new ways of responding to modern forms of illness and dying if we are to maintain any hope of living and dying well.
Palliative care, as an international movement, is trying to respond to these changes. Palliative care seeks to use the powerful tools developed by modern medicine to address the needs of the sick in terms of relieving suffering and enhancing quality of life. We must also be mindful that the very same medical system that creates these tools too often creates new forms of suffering that must be addressed. Thus, palliative care must walk a tight-rope-we try to use a system of medicine for the good of patients and families without being overrun and dominated by that system. Only time will tell if we will succeed. The origins of the palliative care movement are to be found in the hospice movement, an alter-native approach to dealing with terminal illness.
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Palliative Care Perspectives
James L. Hallenbeck, M.D.
Copyright © 2003 by Oxford University Press, Inc.
The online version of this book is used with permission of the publisher and author on web sites affiliated with the Inter-Institutional Collaborating Network on End-of-life Care (IICN), sponsored by Growth House, Inc.