Access to hospice care. Expanding boundaries, overcoming barriers.

Too many Americans approach death without adequate medical, nursing, social, and spiritual support. (1) In the last stage of a long struggle with incurable, progressive diseases such as cancer, heart or lung disease, AIDS, Alzheimer's, Parkinson's, or amyotrophic lateral sclerosis, their pain is untreated or inadequately controlled. Their depression or other mental health problems are not addressed. Debilitating physical symptoms rob them of energy, dignity, and sometimes the will to carry on. Family members who provide care are stressed, inadequately supported by professionals, and often rendered ill themselves by the ordeal. Patients who wish to remain in familiar surroundings at home are often forced to spend their final days or weeks in a hospital or nursing home. Neither dying patients nor their families are provided with the kind of emotional and spiritual support they desire and need. In sum, too many Americans die unnecessarily bad deaths--deaths with inadequate palliative support, inadequate compassion, and inadequate human presence and witness. Deaths preceded by a dying marked by fear, anxiety, loneliness, and isolation. Deaths that efface dignity and deny individual self-control and choice. And too many Americans have their access to better care and services, through hospice and other forms of palliative care, blocked by a lack of information, misunderstandings, ambivalence about treatment options, unfairly restrictive governmental policies, financial limitations, and other factors that can and must be changed. Death is an inevitable aspect of the human condition. Dying badly is not. Yet it usually cannot be avoided by single individuals and families acting alone. Dying badly is a social problem that requires a social solution. It is an artifact of the way our health care system is organized and financed. And it is a product of our societal failure to perceive the ethical and human cost of limited access to, and inadequate provision of, hospice care. Although the acceptance and utilization of palliative and hospice care have grown, there are still over one million Americans who die each year without receiving the hospice or hospice-type services that would have benefited them and their families. These are difficult, even daunting, problems in the American health care system today. Who opposes improvements in palliative and end of life care in the abstract? The challenge is to find new practical approaches to hospice care, building on the strengths that this movement has developed over the years and correcting those policies and practices that have shown themselves to be unduly restrictive, unworkable, or unwise. The challenge of end of life care will grow more serious over the next three decades. The population of seniors in the United States is projected to more than double over the next 30 years, rising from 34 million in 1997 to over 69 million by 2030. At that time, one in five Americans will be age 65 or older. One in nine baby boomers is expected to live to age 90, and by 2040, the number of Americans over age 85 will be nearly four times greater than today. (2) The United States already struggles to provide basic primary care to its population; more than 40 million Americans are without consistent or adequate health insurance coverage. Either they do not have access to health care at all, or they do not get it in a timely or efficient way. Out-of-pocket expenses for prescription drugs are a significant burden to many, and families must shoulder most of the financial and emotional burden for long-term care. We have been remarkably slow to acknowledge the impending health care crisis that looms ahead, much less the serious problems already with us. Health insurance reform has failed several times since the end of World War II, despite the bipartisan efforts of several presidents. Some incremental efforts are under way, but there is no public or governmental vision of a just health care system as a whole. …