Our Medical Crisis: End-of-Life Care

Imagine that you're dying. Your doctor says, "You've got six months left." What sort of a death do you envision yourself having-is a "good death" possible, and if so, what does that mean to you?

Unfortunately, the American system of end-of-life care is broken, and positive experiences with death are the exception rather than the rule. Statistics and clinical studies indicate that you will probably die alone, in pain and receiving aggressive medical treatment unjustified by likely benefits. A high-tech, high-cost, hospital death will most likely leave your family emotionally and literally impoverished.

Our crisis in end-of-life care is one of the main reasons that physician-assisted suicide is at the forefront of public and professional discourse today.

Americans distrust the cavalierism of modern-day health care and fear invasive medical intervention to the bitter end, or a lingering, undignified death while hooked up to life-prolonging technologies. A Gallup Poll conducted last April found that 75 percent of Americans believe that doctors should be allowed to end the lives of terminally ill patients by painless means if the patient requests it. Two appeals cases on this issue made it to the U.S. Supreme Court this summer; the Court ruled that there was not a constitutional right to receive physician aid-in-dying, thus effectively turning the issue over to state legislatures for further discussion and subsequent legislation.

To understand the woefully inadequate experience of death in society today, we must understand how our medical and cultural experience of dying has changed dramatically over the previous century.

In 1900, life expectancy in America was 47 years. Antibiotics were unknown, and death often took place in the family presence, with most people dying at home. Now, with life expectancy climbing past 75, largely due to rapid medical and technological advances, we are able to live long enough to die from slow chronic killers such as cancer and heart disease.

Medicine has altered the trajectory of dying and provided us with a much longer time frame to confront and come to terms with our own mortality. The organization of health care delivery has also resulted in as many as 80 percent of people dying in institutional settings such as hospitals or nursing homes.

While the majority of us wish to be surrounded by family and friends, we spend most of our time next to machines and equipment, in the company of people who, despite their best intentions, may have no intimate knowledge of our personality, values, or priorities.

Second, never before have so many of us been so old. Currently, one in eight Americans is over 65 years old and in another half-century, 1 in 5 Americans will be over 65. The end result of these factors is that the number of people who die annually, and thus face these difficult decisions, is only going to rise.

A third major factor is the lack of medical education and training in end-of-life care. The eight-year, $20 million Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT), the largest, most rigorous study ever of the experiences of patients facing the end of life, confirmed our worst anxieties. Its main finding was that communication between health care professionals and terminally ill patients was horrendously insufficient. As a result, physicians often knew very little about their patients preferences for end-of-life care, and were reluctant to discuss the topic.

This is largely due to the fact that almost all medical schools in the United States address issues of death inadequately and dying in their training programs, offering on average zero to four hours of relevant lecture time. Only five of the 126 U.S. medical schools have a separate required course on the care of the dying. Physicians are taught how to cure diseases, heal patients and save lives at almost all costs, but not how to cope with life's inevitable final chapter.

Another problematic area is pain management. The SUPPORT study found that over a third of terminally ill hospital patients die in pain, often because of poor pain assessment and lack of knowledge among physicians about various drug therapies.

Lastly, this debate is also fueled by evolving notions of individual liberties and a patients' right to self-determination.

For a long time, suicide has been a felony in this country. This law reflects the traditional belief that the lives of individuals belong not only to themselves but also to the families and communities in which they are embedded. In recent history, however, our laws have increasingly suggested that our lives do indeed belong more to ourselves, and patient rights have become exalted.

In 1976, California passed a Living Will law, allowing individuals to express their own preferences for end-of-life care, including freedom from aggressive medical therapies. In 1980, Derek Humphry founded the Hemlock Society, the largest international public advocacy group lobbying for a competent, terminally ill individual's right to physician aid-in-dying. In 1990, the Supreme Court affirmed a constitutional right to refuse unwanted medical treatment, including food and fluids, and to appoint a health care surrogate decision-maker. These milestones demonstrate the concerted policy shift towards patient autonomy and patient-centered care.

Is physician aid-in-dying the most moral, compassionate and reasonable option to relieve suffering among the terminally ill? Would this new right provide a greater degree of control and freedom to a dying individual, or would it only weaken our society's respect for life? Can alternative approaches to dying allow one to experience a good death? More fundamentally, do our lives ultimately belong to us or to the larger community in which we are deeply rooted?

These are just a few of the sensitive and difficult questions which we will all have to come to terms with in the future. Our first priority now should be to recognize the need for open, balanced discourse on these issues and to take the time to explore our own feelings and understand this complex debate from many perspectives so that we can make an informed decision.