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Hospice and Palliative Care
I've written about my own experience with hospice in my book DYING: A BOOK OF COMFORT. When my father died, my family and I were able to help him do so with the help of a wonderful hospice in Southern California. When my mother died, at the home of my brother and his wife, they too -- Mom and Steve and Sue -- were able to get through a difficult death chiefly because a Utah hospice helped them deal with practical, emotional, and spiritual issues. I expect there are inadequate hospices somewhere, but that has not been my experience.
People often wait too long to call about hospice. What hospices know how to do is alleviate pain and suffering. As soon as pain is an issue, look into the option of hospice care or palliative care. Most of it is done in the home, with hospice volunteers helping families cope. If you aren't sure that that someone is dying, let hospice experts and your physician help you figure things out. Don't wait too long -- because what they are good at is helping people feel comfortable, and most professionals in the regular health care system are not nearly so good at that. Palliative care serves an important function.
Following are links to some resources. To find a good hospice near you, ask friends if they know of a good local hospice; ask the social workers at your local hospital for a referral; check the yellow pages under Hospices; ask for referrals through the local American Cancer Society, an Agency on Aging, Visiting Nurse Association, or house of worship. Check with the National Hospice and Palliative Care Organization (click on link below, or call NHPCO’s HelpLine at 1-800-658-8898). Check with the local state departments of health or social services to learn which hospices are certified (making them eligible for Medicare and in some states Medicaid). Or Google hospices and your zip code (which may turn up hospices that do not belong to NHPCO as well as those that do).
One gift you can offer a person in hospice care is the gift of life review--the gift of reminiscence. Helping the dying to capture their life story, whether written or recorded, is to let them know that they will not be forgotten. It's best not to wait till they're in hospice to offer this gift, as with waning strength they may not be able to say much, and their memories may be fading. But if they have not had that gift of life review at the point when the end is near, it can feel powerful to speak to someone who is truly listening and who will remember. And if you record their voice, often you will later find that that recording is the only one the family has, and it will mean a lot to them.
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Links to Hospice and Palliative Care
Buchwald, Art. Heaven Can Wait (Buchwald's classic essay on hospice care, Washington Post 5-23-06) CaringBridge.org (free websites to support and connect loved ones during critical illness, treatment, and recovery)
Caring Connections (tollfree help line 1-800-658-8898, National Hospice & Palliative Care Organization)
Gawande, Atul. Letting Go. What should medicine do when it can’t save your life? "All-out treatment, we tell the terminally ill, is a train you can get off at any time—just say when. But for most patients and their families this is asking too much. They remain riven by doubt and fear and desperation; some are deluded by a fantasy of what medical science can achieve. But our responsibility, in medicine, is to deal with human beings as they are. People die only once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come—and to escape a warehoused oblivion that few really want." ~ Atul Gawande, writing about hospice medical care for dying patients (New Yorker, 8-2-2010, and in a follow-up discussion with readers). Helping Patients Face Death, She Fought to Live (Anemona Hartocollis, NY Times, 4-3-10, profiles the unexpected denial of death a palliative care doctor showed when cancer ended her own life all too soon). Part of the Times' Months to Live series, examining the promises and challenges of extending, or ending, the lives of very ill patients.
Jane Brody's Guide to the Great Beyond: A Practical Primer to Help You and Your Loved Ones Prepare Medically, Legally, and Emotionally for the End of Life -- a practical book, with explanations and to-do lists for everything from advance directives and why a living will is not enough to funeral plans, living with a bad prognosis and dealing with uncertainty, caregiving, hospice, communicating with doctors, assisted dying, organ donation, autopsy, and legacies.
Making Rounds with Oscar: The Extraordinary Gift of an Ordinary Cat by David Dosa (about a cat who senses death and stays to comfort the dying, but also about Alzheimer's and geriatric care and nursing homes and being there, at the end of life)
Months to Live. A New York Times series, examining the promises and challenges of extending, or ending, the lives of very ill patients. Includes Weighing Medical Costs of End-of-Life Care by Reed Abelson, 12-22-09; Fellow Inmates Ease Pain of Dying in Jail by John Leland, 10-17-09; Sisters Face Death With Dignity and Reverence by Jane Gross, 7-8-09 (a group of convent sisters rely on social networks rather than aggressive medical care); Fighting for a Last Chance at Life, by Amy Harmon, 5-16-09 (A family’s campaign for access to an unproven drug (Iplex, for ALS, or Lou Gehrig's disease) highlights the challenges terminally ill patients face in the search for treatment; and At the End, Offering Not a Cure but Comfort (Anemona Hartocollis, 8-20-09 on what palliative care specialists do during patients' last months).
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"You matter until the last moment of your life, and we will do all we can, not only to help you die peacefully, but to live until you die."~ Dame Cicely Saunders, the nurse and physician who founded the modern hospice movement, a pioneer in palliative care
“I once asked a man who knew he was dying what he needed above all in those who were caring for him. He said, ‘For someone to look as if they are trying to understand me.'
Indeed, it is impossible to understand fully another person, but I never forgot that he did not ask for success, but only that someone should care enough to try.” ~ Dame Cicely Saunders, who died July 2005, at age 87, in the hospice she founded
This quotation is from the BBC obituary for her, which speaks of her belief that dying is a phenomenon "as natural as being born," at the heart of a philosophy that sees death as a process that should be life-affirming and free of pain.
"This remarkable collection, coming from personal experience and wide reading, will help many find the potential of growth through loss." ~ Dame Cicely Saunders, founder of the hospice movement
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