Stay Close and Do Nothing: A Spiritual and Practical Guide to Caring for the Dying at Home By Merrill Collett Andrews McMeel, Kansas City 240 pp., $22.95 Caregiving: Hospice-Proven Techniques for Healing Body and Soul By Douglas C. Smith Macmillan, New York 222 pp., $14.95
In the four years since Sherwin B. Nuland scored a bestseller with his book "How We Die," a small publishing boom has occurred around the problems -- and opportunities -- found during the latter stages of terminal illness.
Last year, hospice physician Ira Byock answered Nuland's grim picture with "Dying Well." Byock argued that life's final chapter, gritty, messy and painful though it may be, also carries important opportunities for reconciliation, reflection, life review and closure -- so long as the dying person's pain and physical needs are addressed.
Among the new books on end-of-life care are two written from the vantage point of hospice, which is a program established to care for those in their final months.
Former foreign correspondent Merrill Collett's "Stay Close and Do Nothing" is based on its author's experiences as a volunteer caregiver at the Zen Hospice Project, associated with the San Francisco, Calif., Zen Center. Collett's book speaks directly to the families and friends of people with terminal illnesses, offering them the hopeful message that they can successfully care for a dying loved one at home. In accepting this responsibility, they also bestow a priceless gift. "By choosing to be a caregiver," he writes, "you can help someone dear to you die at home, free from unwanted medical interventions, relieved of as much pain as possible, and warmed by the sun of your loving attention."
Collett explains the complex role of the family caregiver who, supported by professional caregivers such as hospice teams, assumes the primary responsibility for a dying loved one's care and must juggle a host of physical, practical and emotional concerns. "Caregiving is a tender craft we learn by doing. Patient care is so constant and so challenging that it can alter the old, stale ways we see ourselves," he says. "And you'll learn new things about yourself. The biggest discovery is that you already have what it takes." The essential skills needed for this task, he adds, are the capacity to listen, to learn and to love.
Collett's book is clearly written and conveys real empathy and understanding for the caregiver's challenge. He unflinchingly wades into the earthiest subjects of caregiving, including the basics of eating and elimination, how to keep the patient clean and dry, techniques of pain relief, preventing bedsores, and how to construct a draw sheet and move an immobile patient in bed. It would be hard to find a clearer and more helpful discussion of nitty-gritty caregiving tasks such as giving a bed bath, cleaning soiled bedsheets, or making a bed with someone still in it.
Most of all, he counsels acceptance and a kind of loving detachment to protect the caregiver from being consumed by the responsibility -- utilizing a heavy dose of meditation and breathing techniques derived from Collett's Buddhist practice.
Douglas C. Smith's "Caregiving" also presents hospice-derived insights with a pronounced slant: the author's firm advocacy for the "rights" of those who are terminally ill and for returning to them, as much as possible, the control over their own lives that has been stolen by illness, medical routines and families' unintentional interventions. He describes the various losses dying patients experience, and their grief over the looming loss of everything.
"As caregivers, we need to remind ourselves never to forget that a dying person is a living person," he writes.
Based on a decade of work in the hospice field (he now directs Kanawha Hospice in Charleston, W.Va.), Smith offers a nine-point dying patient's bill of rights. Although some of these may seem obvious (the right to be comfortable, to cry and express anger, to explore the spiritual, to have a sense of family), Smith shows how these rights are often eroded by illness and he offers techniques for restoring them.
Smith's book, which is targeted more at health professionals and volunteers than at family caregivers, is filled with over a hundred exercises, assessment tools, stress reduction techniques, meditations and scripts for guided imagery. Two-thirds of the book is taken up with these tools and techniques, making it more of a training and professional self-improvement resource than a book to be read straight through. But he also offers numerous stories of real patients he has known to illustrate his nine rights.
Smith offers as well the valuable insight that medical assessments of dying patients shouldn't focus only on their needs; their personal strengths and assets should be enlisted so they can play a role in their own care.
Family and hospice caregivers will find both these books full of practical, field-tested advice and techniques on how to navigate the rigors of caregiving through to the ultimate goal of a peaceful, comfortable, dignified death.
However, the books take for granted what may be an even more difficult issue: When is hospice appropriate? When is the right time to give up on aggressive, cure-oriented medical care and focus instead on making the most of the limited days that remain? These questions are far from easy.
Although U.S. hospices cared for nearly half a million dying Americans last year, an increasing proportion are referred to hospice only in the final days or even hours of their lives -- too late for much beyond crisis management. Understandably, patients, family members and physicians are reluctant to "give up," to accept a terminal prognosis, or to bring the painful subject out into the open. But if the benefits to patients and families from the hospice approach, as portrayed in these books, are to be realized, we must also learn to identify the right time to use it. Larry Beresford is a San Francisco-based freelance journalist, editor of the Hospice Management Advisor newsletter and author of "The Hospice Handbook" (Little, Brown).