The debate over the care of the terminally ill has largely focused on the issue of physician-assisted suicide. But the more important issue is how to best provide care at the end of life.

The quality of care for dying people in the United States is inadequate. In this country most deaths occur in hospitals and other institutions where, in the majority of cases, palliative care is minimal and patients' wishes regarding their own deaths are ignored. Too often patients spend their last days suffering from pain and feeling abandoned.

According to the American Academy of Hospice and Palliative Medicine, most health care professionals and members of the public are unaware that comprehensive palliative care can alleviate suffering. Most people still don't know what comprehensive palliative care is. They don't know that there are clinicians who can provide patients with the help they need to make informed choices about medical treatment, to live comfortably during end-stage illness, to prepare for death, and to die with dignity and respect in the company of loved ones. Tragically, the absence of palliative care has led some patients to conclude that the only alternative to end-of-life suffering is premature death through physician-assisted suicide.

The Project on Death in America supports research and other activities contributing to humane end-of-life care. But what does proper care consist of? What constitutes palliative care? What are the barriers to provision of and patient access to palliative care? How can you determine if a palliative care program or hospice program really provides adequate care?

This memo addresses these questions, provides background information and the names of expert sources, and suggests areas of inquiry for journalists reporting on health care. If the American way of death is to be improved, the public must be acquainted with possibilities and options. People cannot ask for services that they are unaware of. Nor can they support policy reforms or the work of palliative care pioneers if they do not know that a better way of dying is possible.

Contents:
What Is Palliative Care?
Economic Barriers to Palliative Care
Palliative Care Education
Treatment of Pain
Profiles of Researchers and Projects