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Narrative Medicine (or medical narrative)and illness memoir |
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Hospice care and palliative care
(care to comfort, not to cure)
• Hospice care and palliative care
(what you should know about end-of-life care)
• Links to hospice and palliative care
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. No doubt there are inadequate hospices, but that has not been my personal 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 palliative care or hospice care (the most comprehensive and best-known form of palliative care). For us, hospice care was provided in the home, with hospice volunteers helping our family cope --and this is fairly common. But hospice care can be provided in hospitals, assisted-living residences, long-term care facilities, and special hospice facilities. If you aren't sure that that someone is dying, let hospice experts and your physician help you figure things out. (Just realize that your doctor may hesitate to suggest hospice care, fearing you will lose hope; so ask, and hear what your doctor has to say.) Don't wait too long -- because what hospices 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 resources that may be helpful for end-of-life care even if you choose not to seek the help of hospice workers.
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).
Consider offering a person in hospice care the gift of life review--the gift of reminiscence. Helping the dying to capture their life story, whether written or recorded or simply shared with a good listener, 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 waning strength may make it difficult 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 many who record these sessions are told later that this is the the only recording the family has. It is tremendously comforting, later, to be able to hear the voice of someone who has passed on. What would you give to hear the voice of your grandfather?
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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) A Calling for Care of the Terminally Ill (Andi Rierden, NY Times, 4-19-98, writing about Florence Wald, who spent two years talking to officials, inmates and health-care providers in Connecticut to learn the needs of dying prisoners and their families)
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)
'Dignity therapy' gives comfort to dying patients. Helping terminally ill patients pass on their final thoughts may help give them a better quality of life, reports Harvey Chochinov, head of a Canadian research study (Jonathan Shorman, USA Today 7-11-11, on study published in Lancet Oncology)
The End of Life: Exploring Death in America (PBS series)Transcripts and audiotapes on topics ranging from palliative care and the afterlife to do-it-yourself funerals and burial societies
Engage with Grace and the One Slide Project. To help ensure that all of us--and the people we care for--can end our lives in the same purposeful way we lived them. • Watch the Engage with Grace Story (Video, Za's Story) • Download the One Slide (PDF)
Facts about end-of-life care. Helpful and interesting information and quotations, collected by Gil Porat, MD, author of The Other Face of Murder, a novel mixing mystery and humor, which conveys the complexity of end-of-life issues.
Fellow Inmates Ease Pain of Dying in Jail (John Leland, Months to Live series, NY Times, 10-17-09)
For Dying People, A Chance To Shape Their Legacy (Julie Bierach, Weekend Edition, NPR, 4-9-11). Imagine that you've just been told you have only a short time to live. What would you want your family and community to remember most about you? In St. Louis, a hospice program called Lumina helps patients leave statements that go beyond a simple goodbye. At the website of BJC Palliative Home Care and Hospice you can download a patient handbook and/or a caregiver instruction manual (PDFs), and a PDF of Courtney Strain's What you can do when a friend (like me) faces the end of life.
Future Elder Caregivers Should Learn Life Histories. The social work and history departments at the University of South Florida designed a project to introduce the concept of "person-centered care": Working with a class of 22 undergraduates, 23 participants from a residential facility for seniors shared their life stories in various ways (talking, creating a scrapbook, being videotaped for an oral history, etc.). It makes a difference!
** 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 dying patients offers Canadians life lessons (Carmen Chai,National Post, Canada 12-6-10)."Canadian hospice care workers say their daily experience caring for dying patients has changed their personal lives — but in a positive way, according to a new study that looks at how people are shaped by exposure to death." Listening to dying patients "helped health-care professionals realign themselves to live as meaningful a life as possible."
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 Plans for the Last Chapter of Life (Talk of the Nation, 8-31-09--listen or read transcript). Sherwin Nuland and Ira Byock tell Neal Conan how they talk with patients who are facing the ends of their lives.
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).
Pallimed (a hospice and palliative care blog). Entries include The Unspoken (a short film about father-son communication), What Happens When the Patient Stops Fighting Cancer?
Patient with Chronic Lung Cancer Becomes Hospice Caregiver. (ABC News, Good Morning America 3-18-11). Jim Stanicki has not only accepted his fate, but has become a leading voice on how to enjoy life, whether you know the end is coming or not.
PBS Series: The End of Life: Exploring Death in America. Transcripts and audiotapes of excellent programs on topics ranging from palliative care and the afterlife to do-it-yourself funerals and burial societies.
Pet End-of-Life FAQ (helpful ASPCA articles on pet loss, including one on hospice or palliative care, to reduce your pet's suffering)
The Unspoken Diagnosis: Old Age (Paula Span, The New Old Age, NY Times 12-29-11)
When is the right time? What are some signs that a person may be ready for hospice care? What are some signs that our family could benefit from hospice care? And in Frequently asked questions, Is care provided only in the homes of patients? Only for patients with cancer? The answer is no to both questions.(Hospice and Palliative Care of Greensboro)
Who decides when medicine prolongs dying, not living? (Susan Jacoby, The Spirited Atheist, Washington Post, 1-31-11)
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“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.
"I read what the Hospice guidebook has to say about the last stages of life, as the body and mind shut down: how death is a gift for both the person dying and those taking care of him. But the gift for me is Hospice itself.
"My country can seem so shameful, with its warmongering and imbalance of wealth, and neither the military nor any politician ever stirs me to patriotism. But Hospice does. That there is a group like this, that these people have helped so many die with grace, makes me proud of my beautiful nation and everyone in it. I know that Hospice started in England and exists in many other countries--but this is the Hospice and palliative care I know, one recognized by our government and largely paid for by Medicare. So now I sing praises to my country."
~ John Thorndike, writing about his father's final year, in in The Last of His Mind: A Year in the Shadow of Alzheimer's
Engage with Grace and the One Slide Project. To help ensure that all of us--and the people we care for--can end our lives in the same purposeful way we lived them. • Watch the Engage with Grace Story (Video, Za's Story) • Download the One Slide (PDF)
"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
"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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