Guidance for People Facing Serious Illness

By Joanne Lynn, Joan Harrold and

The Center to Improve Care of the Dying

Oxford. 242 pp. $25

Reviewed by Suzanne Gordon

One of the casualties of the media's focus on physician-assisted suicide and Jack Kevorkian has been serious coverage of the field of palliative care -- the care of patients with advanced or terminal illnesses. Although doctors, nurses, social workers and others in the palliative care movement have made great strides in reducing patients' exhausting pain and symptoms and providing needed emotional support to them and their families, their innovations are some of the best-kept secrets in American health care.

In Handbook for Mortals, Joanne Lynn and Joan Harrold and their colleagues at the Center to Improve the Care of the Dying reveal why the philosophy of palliative care is so important to the debate about the care of the dying. Their brilliantly titled guide helps patients both confront mortality (something Americans have resisted for decades) and exert some control over the dying process. Their advice helps patients and families understand that they don't have to tolerate the kind of excruciating pain, emotional isolation, and medical abandonment that makes physician-assisted suicide appear to be the only alternative to over-medicalized death.

The authors believe that "there is no one right way to live with or die of a serious illness." In an empathic, conversational tone, they present information on all the options, from pain management to getting home health care, from how to get aggressive, curative treatment to how to decide when to stop such treatment. Because their readers will be people in crisis -- who lack the time and energy to pore over reams of facts and decode terse scientific studies -- the book is mercifully short and refreshingly free of jargon. User-friendly boxes highlight or summarize important points, and italicized entries present moving patient profiles, snippets of poetry or fiction, and meditations about living with serious illness.

Handbook for Mortals is filled with practical advice. Many people, for example, are afraid to talk to a dying friend or relative about the taboo topic of terminal illness. But having a terminal illness is an inherently isolating experience. The authors thus warn relatives and friends against well-meaning cliches that -- albeit inadvertently -- silence the sick. "When you think you want to say: `Don't talk like that! You can beat this!' " the authors suggest, "Try instead . . . `It must be hard to come to terms with all this.' " They also warn patients against silencing themselves. "It is after all better to have told people that you love them more than once than to have missed the opportunity while waiting for just the right moment," they sagely advise.

The authors delve into and make accessible the critical problem of pain management, and explore the specifics of dying from a variety of different illnesses, including cancer, heart disease, kidney failure and HIV/AIDS.They deftly discuss the heart-wrenching experience of dealing with a dying child. An excellent chapter on forgoing medical treatment examines some of the many fears and myths that lead family members to continue aggressive treatment when it will do more harm than good. For example, most of us believe that "food means love," and will do anything to try to prevent a family member or friend from starving to death. In fact, forced feeding of the dying or relentlessly pumping intravenous fluids into a patient whose vital systems are crashing can lead to more, not less, suffering.

And what about "pulling the plug"? The authors provide useful information as well as relevant questions to ask the doctor about withdrawing artificial life support: "Ask your doctor how comfortable he or she is in removing the ventilator. Can your doctor keep you comfortable as the ventilator is removed? Does your doctor have experience using medications for sedation, so you won't ever feel short of breath?" No topic is out-of-bounds or too trivial for consideration. The authors recognize that most of us are unfamiliar with the mechanics of dying. So they give a short course in the nuts and bolts, as it were, of the dying process. We learn how to determine when death is close, how to ascertain when a person is actually dead, and how to make funeral and even autopsy arrangements.

What makes palliative care -- and this book -- unique is its commitment to teamwork among patient, family and physician as well as among physicians and nurses, social workers, pastoral counselors, and music therapists, among others. Unlike many other medical self-help books that highlight only the physician's role, Handbook for Mortals constantly advises readers to look beyond the physician to the other health-care providers who will be central to their care.

Indeed, the authors explain that when they use the term "doctor" in the book, they may actually be referring to a nurse, nurse practitioner, or physician's assistant. Although physician resistance to palliative care has tended to be one of the primary obstacles to more humane care at the end of life, Lynn, Harrold and their colleagues never engage in doctor-bashing. In a chapter about talking with your doctor (and here the problem players are clearly doctors) they walk their readers through a variety of scenarios that will "set the stage for a successful conversation."

Their assiduous attention to helping patients direct the medical encounter does underscore, however, the need to change medical culture. Why must patients be careful not to offend and alienate their physicians? Because doctors have been socialized to believe they know more about their patients than their patients know about themselves. If physicians read this book, perhaps they will realize that the sense of professional failure they feel when a patient dies should never take priority over alleviating the pain, suffering and isolation of the terminally ill and their families and friends.

Handbook for Mortals will surely help to popularize a philosophy and model of care that help patients navigate the last days of life with far more control, comfort, grace, and dignity than the majority of us experience today.

Suzanne Gordon is a journalist who writes about health care. Her latest book is "Life Support: Three Nurses on the Front Lines."