(end-of-life care -- care to comfort, not to cure)
• The differences between hospice care and palliative care
• Why you should engage palliative care sooner rather than later
• Frequently asked questions
• Finding a hospice or hospice care
• Managing costs
• Issues with end-of-life care
• Issues with for-profit hospices
• Stories about end-of-life care
• Hospice blogs
• Helpful organizations
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. His dying took place over two years and hospice care is available mainly over the last six months, although when projections of longevity change there can be extensions. 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, particularly with the proliferation of for-profit 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: "The focus of hospice is on caring, not curing." 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--or maybe, subconsciously, fearing that hospice care means he has failed. 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. There are many stories of people feeling much better once they get palliative care. 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?
How medical professionals can help terminally ill patients prepare to die
Letting Go. What should medicine do when it can’t save your life?by Atul Gawande (New Yorker, 8-2-2010, and in a follow-up discussion with readers) "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.
Being Mortal: Medicine and What Matters in the End by Atul Gawande. How medicine can not only improve life but also the process of its ending. (1500+ Amazon readers have given this an average five-star rating.) “In the end, people don’t view their life as merely the average of all of its moments—which, after all, is mostly nothing much plus some sleep. For human beings, life is meaningful because it is a story. A story has a sense of a whole, and its arc is determined by the significant moments, the ones where something happens. Measurements of people’s minute-by-minute levels of pleasure and pain miss this fundamental aspect of human existence....When our time is limited and we are uncertain about how best to serve our priorities, we are forced to deal with the fact that both the experiencing self and the remembering self matter. We do not want to endure long pain and short pleasure. Yet certain pleasures can make enduring suffering worthwhile. The peaks are important, and so is the ending.”
Watch online: PBS's Frontline broadcast, Being Mortal (Atul Gawande in a powerful televised version of his wonderful book.
“A family meeting is a procedure, and it requires no less skill than performing an operation.” One basic mistake is conceptual. To most doctors, the primary purpose of a discussion about terminal illness is to determine what people want—whether they want chemo or not, whether they want to be resuscitated or not, whether they want hospice or not. We focus on laying out the facts and the options. But that’s a mistake, Block said. “A large part of the task is helping people negotiate the overwhelming anxiety—anxiety about death, anxiety about suffering, anxiety about loved ones, anxiety about finances,” she explained. “There are many worries and real terrors.” ~Atul Gawande, Being Mortal: Medicine and What Matters in the End
"Palliative care is whole-person care that relieves symptoms of a disease or disorder, whether or not it can be cured. Hospice is a specific type of palliative care for people who likely have 6 months or less to live. In other words, hospice care is always palliative, but not all palliative care is hospice care." ~ from Frequently Asked Questions About Hospice and Palliative Care (Palliative Doctors)
Hospice care emphasizes palliation of symptoms but is limited to what doctors project are the last six months of a person's life (for Medicare reimbursement). The goal is no longer to cure, but to promote comfort.
Palliative care focuses on relieving symptoms related to chronic illnesses and can be used at any stage of the illness — not just the advanced stages.
• Bounced from Hospice (Paula Span, The New Old Age blog, NY Times, 1-7-14) "...hospice patients sometimes hit plateaus or temporarily improve; in fact, studies have shown that they live slightly longer than those with the same diseases but without the additional care. At that point, to comply with Medicare rules, 'you have to seriously consider whether they’re eligible to continue.'"
• Differences in Palliative vs. Hospice Care (San Camillo) Differences in definitions, treatments, timing of treatment, types of services. See brief summary of insurance coverage along right side. "While each medical insurance policy is a bit different, Palliative Care is usually covered through your regular medical insurance. For Hospice Care, Medicare has set the standard for coverage for patients with a prognosis of six months or less, if the disease runs its normal course. Under certain conditions, the Medicare Benefit for Hospice Care may be covered longer than six months. Medicaid and most other insurance plans follow the Medicare guidelines."
• Hospice vs. Palliative Care (National Caregivers Library)
“A landmark 2010 study from the Massachusetts General Hospital had even more startling findings. The researchers randomly assigned 151 patients with stage IV lung cancer, like Sara’s, to one of two possible approaches to treatment. Half received usual oncology care. The other half received usual oncology care plus parallel visits with a palliative care specialist. These are specialists in preventing and relieving the suffering of patients, and to see one, no determination of whether they are dying or not is required. If a person has serious, complex illness, palliative specialists are happy to help. The ones in the study discussed with the patients their goals and priorities for if and when their condition worsened. The result: those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25 percent longer. In other words, our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality.”
¯ Atul Gawande, Being Mortal: Medicine and What Matters in the End by Atul Gawande.
(It might be that palliative patients spend less time in hospital and are thus less likely to pick up a hospital- based infection or be the subject of a medical error.)
One of the chief fears people face as someone they love approaches death is the fear that providing palliative care (comfort care, not rescue care) means they are "giving up." Certainly a time comes when patients or families decide enough is enough, no more pain and suffering, let me enjoy the life I have left. Far too many families wait too late to bring in palliative care and/or hospice care--which are focused not on saving a life but on making the life more comfortable. Getting palliative does not mean you have to give up your curative care team. But not all medical experts routinely bring in palliative care --you may have to ask for it! Hospice care, an important Medicare benefit, is palliative care for terminally ill patients who probably have only months to live. Patients who get hospice care are no longer receiving curative treatment for their underlying disease but do get treatment to keep them comfortable.
Most hospice care is provided at home, typically with a family member serving as primary caregiver. Hospice care may also be available at local hospitals, nursing homes, assisted living facilities and dedicated hospice facilities. No matter where hospice care is provided, if the hospice care team cannot deal with a particular problem in the home setting, a hospital stay may be needed. Read up on the subject. Here are some helpful articles.
• Frequently asked questions about hospice care (FAQs, NHPCO)
• Their Dying Wishes (Ann Neumann, Opinionator, NY Times, 3-4-15). Beautiful story by a hospice volunteer, which may well address questions you have about hospice.
• A Better Way to Manage Pain (Karen Rafinski, AARP Bulletin, print edition, 6-1-11). "Like hospice care, with which it is often confused, palliative care focuses on helping patients with their pain and symptoms, and offering counseling and other services. But if hospice care is about a good death, palliative care is about making the most of life with a serious illness, whether the disease is terminal or not."
• What is palliative medicine? Frequently asked questions about palliative care (Palliative Doctors, "compassionate care at any stage of an illness")
• Choosing a hospice and FAQs about hospice care (Hospice Foundation of America)
• Frequently asked questions about end-of-life experience and care (Ira Byock, MD)
• How to Choose a Hospice (Paula Span, NY Times, 6-17-14).
• 8 Facts to Know About Palliative Care (Sarah Baldauf, US News, 8-25-09). Misconceptions abound. Patients and families need not be afraid to ask for help.
• Frequently Asked Questions (Center to Advance Palliative Care, and National Palliative Care Research Center)
• Choosing a Hospice: 16 Questions to Ask
• Questions To Ask When Looking For a Professional Geriatric Care Manager (NAPGCM)
• Living at the End of Life: A Hospice Nurse Addresses the Most Common Questions by Karen Whitley Bell RN, who "she delivers a wealth of useful information on pain management, choosing a hospice and general day-to-day care giving in a powerful, hard-to-forget way. Straightforward and empathetic, with an easy-to-navigate style, Bell details what to expect in both physical and spiritual terms, including practical considerations as well as ways to find closure and cope with loss." (PW review)
• Links to FAQs (Hospicenet.org)
• Learn the Truth About Hospice Care for Advanced Illness (Frank D. Ferris, Advisor.com). The facts about how hospice and palliative care can give your family help and hope when they need it most
• 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)
• Pet End-of-Life FAQ (helpful ASPCA articles on pet loss, including one on hospice or palliative care, to reduce your pet's suffering)
• What is palliative care, how does one get it, and other FAQs (Get Palliative Care)
• Blog directory, hospice and palliative care community (National Hospice and Palliative Care Organization)
• Top 50 Hospice Care Blogs (2010)
• Crossroads, a blog for family caregivers and healthcare professionals
• Hospice and Nursing Homes Blog (Frances Shani Parker, eldercare consultant and author of Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes)
• Pallimed (a hospice and palliative medicine blog). See, for example, this excellent entry about why doctors might hesitate to prognosticate: Cases: Talking About Prognosis
• Hospice Doctor
• Hospice Physician's Blog (life of a hospice and palliative care doctor)
• Life as a Hospice Patient (the late Judi Chamberlin, about her fight for the right to die at home)
• Takeaways (Debra Bradley Ruder's blog, Goodbyes, Growth House) Here she talks about the value of eulogies, obituaries, and photos, as we mourn the dead. "...
• Cost of Dying: Discovering a better way for final days (Lisa Krieger, Mercury-News, 12-29-12), part of an occasional series on end-of-life care
• Coordinated Care for Those Nearing Life's End--But Does It Save Money? (April Dembosky, New American Media, 6-26-14)
• What Happens When the Doctor Says 'Hospice' and You Understand 'Poorhouse'? (Daniela Gerson, PRI's The World in Words 5-31-14)
• Medicare on Medicare hospice benefits . See also Is my test, item, or service covered? (Medicare.gov)
• FAQ: What is the Medicare Hospice Benefit? (American Hospice Foundation)
• What services are typically covered by hospice benefits? (American Hospice Foundation)
• Managing the Cost of Terminal Illness. Part 1: Prepare in Advance (Chris Cooper, financial planner)
---Part 2: Evaluate All Your Options
---Part 3: Consider Palliative Care (Chris Cooper)
• Fighting Financial Abuse of the Elderly (Chris Cooper)
• Assisted suicide compromise (Arthur Caplan and Wesley J. Smith, USA Today, 11-13-14). "As matters stand, the law requires patients considering hospice to make an awful choice. In exchange for insurance paying for hospice care — which focuses on pain control, symptom management and social support — the patient must forgo all other forms of treatment....That needs to change. If we really care about death with dignity, we will stop making dying patients choose between hope and comfort when they can easily — and affordably — have both"
• Is one hospice the same as any other? No. Why it’s important to choose carefully. (Peter Whoriskey, Washington Post, 9-3-14)
• Agency Locator (National Association for Home Care & Hospice)
• Hospice directory (Hospice Foundation of America). Links to state hospice organizations, where you can learn about local hospices.
• Choosing a Hospice: 16 Questions to Ask (American Hospice Association)
• Consumer Guide to Hospice by Dan Keating and Shelly Tan (Washington Post, 10-26-14). Consumers can benefit from knowing how a hospice compares to others on certain important measures.
• Choosing a Hospice: Reviewing the Washington Post's Consumer Guide to Hospice (Dale Lupu, Pallimed,
• How to find a good hospice program (Consumer Reports, 10-2014) 6 features to look for
• Quality of U.S. hospices varies, patients left in dark (Peter Whoriskey and Dan Keating, Washington Post, 10-26-14). Part 5 of a series on The Business of Dying.
• The Death Doula (Mara Altman, Modern Loss, 7-10-14) Hear the word 'doula' and you're likely to think of a birth coach. But some doulas are trained to help the dying.
• Doulas, Who Usher in New Life, Find Mission in Support for the Dying Death doulas (also called death doulas (also called end-of-life doulas, death midwives, or simply companions) help the dying with practical arrangements, like choosing and organizing caregivers, organizing paperwork, or just providing company--which may be the most important gift to many. The industry is not regulated, but training is available.
• Doula Program to Accompany & Comfort (a nonprofit organization that specializes in training and supervising volunteers who visit individuals facing the end of life without family or friends)
• Find a care provider (National Hospice and Palliative Care Organization's directory of members and vendors) Or call NHPCO’s HelpLine, 1-800-658-8898)
• Hospice Directory
• Finding a local hospice (Caring Connections)
• Finding a local hospice
• How to find a professional geriatric care manager (National Association of Professional Geriatric Care Managers, NAPGCM). Families of patients with a complex assortment of problems often have trouble keeping everything straight. A good geriatric care manager can help you schedule procedures and visits and hire the nurses and medical aides who keep dressings clean, keep track of things like which medications to take when, and so forth.
• UK hospice and palliative care services (find a hospice in UK or Ireland)
• Global Partners in Care, improving access to hospice and palliative care worldwide where the need is great and the resources are few (formerly Foundation for Hospices in Sub-Saharan Africa, ie FHSSA)
• Global directory of palliative care services and organizations (International Association for Hospice and Palliative Care)
• Finding a hospice (Growth House)
• Get palliative care (providing comfort, not cure)
• Find a provider Visiting Nurse Association)
Blog directory for hospice and palliative care community
• American Hospice Foundation
• Canadian Hospice Palliative Care Association
• 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)
• Center to Advance Palliative Care
• National Hospice and Palliative Care Organization (NHPCO)
• National Palliative Care Registry
• Social Work Hospice & Palliative Care Network. SWHPN was created to bridge the gaps in social work’s access to information, knowledge, education, training, and research in hospice and palliative care.
• Visiting Nurse Associations of America (VNAA, advancing nonprofit home healthcare and hospice)
• How to Die (Bill Keller, Opinion, NY Times, 10-7-12). An excellent essay on a peaceful hospital death that followed the Liverpool Care Pathway for the Dying Patient . The Liverpool Pathway or variations on it are common in England and several other countries but are demonized here by people like Sarah Palin (inaccurately as "death panels"). Keller argues that we should practice it not because it is economical (palliative care does cost money), but because it is a" kinder way of death."
• Time For A Shakeup In Hospice Care (Carolyn McLanahan, Forbes, 1-19-13). Most dying patients don't get palliative care soon enough. Among things that need to change: Comfort care should be provided while people are being treated (there should be no "six months to live" rule--who can tell if you have less than six months to live?). Payment systems must change. Hospice is paid a flat fee per day, so the less they do, the greater their profit--a terrible incentive system.
• Dying Shouldn’t Be So Brutal (Ira Byock, The End, NY Times, 1-31-15) "DYING is not easy, but it needn’t be this hard....As the end of life approaches, whether death is welcomed or feared, there is a lot we can do to make the process of dying safer....let’s repeal the Medicare statute that forces incurably ill people to forgo disease treatments in order to receive hospice care."
• Knocking on Heaven's Door: The Path to a Better Way of Death by Katy Butler. Review: "“Once upon a time we knew how to die. We knew how to sit at a deathbed.” In this sad yet valiant and exacting memoir, Butler, an award-winning science writer for the New Yorker and other venues, recounts the plight of her elderly father and the toll his many afflictions exacts on herself and her mother. He suffers a stroke followed by progressive dementia, speech difficulty, visual loss, and incontinence. An injury during WWII already cost him an arm. Before undergoing hernia surgery, a permanent cardiac pacemaker is implanted. As his mind and body further deteriorate, Butler and her mother plead with doctors to deactivate the device to no avail. When he finally dies from pneumonia, the pacemaker continues functioning inside the dead man’s chest, a chilling reminder of “our culture’s idolatrous, one-sided worship of maximum longevity.” About a year later, his physically and emotionally exhausted wife expires. Butler looks at the strain on caregivers, feelings of guilt and grief, the untapped utilization of palliative care, and the haziness between “saving a life and prolonging a dying.” --Tony Miksanek, Booklist
‘Warehouses for the dying’: Are we prolonging life or prolonging death? (Peter Whoriskey, Washington Post, 12-12-14) Sixth in a series on Business of Dying. "One key way to avoid unwanted treatment, according to experts, is to solicit a person’s preferences for end-of-life care before a crisis arrives."
• As more hospices enroll patients who aren’t dying, questions about lethal doses arise (Peter Whoriskey, Washington Post, 8-21-14) The hospice industry is booming, but concerns are rising about treatments for patients who aren't near death.
• End-of-life instructions find no place in electronic health records (Joanne Kenen, Politico, 1-9-15) "The federal government has spent billions helping doctors and hospitals digitize patients’ lives, but there are still many holes in our electronic records including a big one: We can’t list end-of-life wishes.... Some physicians and health care experts who work on end-of-life sense timidity, a fear of going back into “death-panel territory” that has made it toxic to talk about, let alone make policy for, the needs of an aging population."
• Fighting to Honor a Father’s Last Wish: To Die at Home (Nina Bernstein, NY Times, 9-25-14)
"Hospitals, eager to clear beds, increasingly sent patients to nursing homes. The nursing homes were often too short-staffed to reliably change diapers but still drew premium Medicare rates, ordering hours of physical therapy and other treatment that studies showed was often useless or harmful." "Even hospice was limited. Now mostly for-profit, hospice companies would provide supervision and visits at home a few times a week through Medicare if a doctor certified that Mr. Andrey had only six months to live. The hidden catch: He would lose all Medicaid home care, the daily help he needed to be home at all."
• Terminally Ill, But Constantly Hospitalized (Fred Mogul, GTreatments, Weekend Edition, NPR, 9-21-14) Paula Faber decided to fight the cancer "every inch of the way," but she might not have, if her doctors had told her more about the upsides of palliative care and the downsides of aggressive treatment. "I think they sold her on it," says her husband. "She was so afraid of death that she was ready to buy, and they knew it." New York and New Jersey have the highest average end-of-life days in the hospital, instead of death at home and with hospice--partly because when there are plenty of hospital beds they tend to get filled. This and other NPR stories linked to here are part of a reporting partnership that includes NPR, local FM stations, and Kaiser Health News.
• Too Little, Too Late For Many New Yorkers Seeking Hospice (Fred Mogul, Treatments, Morning Edition, NPR, 12-17-14) "About 25 percent of people in the New York metropolitan area use hospice care in their last six months of life, compared with close to 50 percent nationally....Even more than in other places, the goal in New York City is to cure patients rather than simply care for them....If you're referred to hospice, it means no one expects you to get better. And that is, in my mind, a threshold that's difficult for people to step over," says a visiting nurse.
• Hello, May I Help You Plan Your Final Months? (Elana Gordon, Shots, Morning Edition, NPR, 8-27-14) Kate Schleicher is one of 50 or so counselors working for a company founded in 2008 called Vital Decisions. The firm represents roughly a dozen insurance companies nationally that want to, when appropriate, start discussions with beneficiaries about end-of-life care. "When you say that getting better is the most important thing on your mind, what does that look like for you?" Schleicher asks a Rhode Island man in a typical phone call.
• Rural Doctor Launches Startup To Ease Pain Of Dying Patients (April Dembosky, Shots, All Things Considered, 1-3-15) Dr. Michael Fratkin, an internist and specialist in palliative medicine, is essentially the only doctor in a 120-mile stretch to provide palliative care. "Government programs like Medicare and Medicaid don't pay for video sessions when the patient is at home. And they pay poorly for home visits." Fratzkin is looking for new ways to finance the startup he hopes will fill a major need.
• Why so many people die in hospitals instead of at home (Fred Mogul, WNYC, PBS Newshour, 9-22-14) "A year after his wife Paula died, Ron Faber still believes her oncologist at Beth Israel Hospital was strangely optimistic about her prospects. Faber acknowledges it was Paula’s decision to fight the cancer “every inch of the way,” but he thinks she might not have, if her doctors had told her more about the upsides of palliative care and the downsides of aggressive treatment."
• Care of Chronically Ill Patients during the Last Two Years of Life (Dartmouth Atlas of Health Care)
• Our medical system is ill-prepared for baby boomers (Katy Butler, Marin Voice 5-21-14) "A 'silver tsunami' of aging and dying baby-boomers is colliding with a medical system that pays well for long-shot tries at cure — but very little for care.... As a national health policy, it makes no sense. A single day in a hospital costs insurers roughly $1,670 — more than 10 times what hospices are paid per day, nationally. And hospitals are where people like Pete end up when they and their doctors do not know how to talk about death and keep chasing will-o'-the-wisp treatments. ... If we can pay for late-stage chemotherapies that are proven not to extend life and often create great suffering, we should pay doctors equally well to break bad news honestly."
• Bounced from Hospice (Paula Span, NY Times, 1-7-14). "Hospices have lamented for years that dying patients wait too long to call, enrolling at the eleventh hour when they could have benefited months earlier. Now, we’re hearing more about patients doing as hospice believers (including me) have urged, calling earlier in the course of a terminal disease — and then, in a substantial minority of cases, getting bounced."
• Care Transitions Activism for Geriatrics and Palliative Care (Dr. Joanne Lynn, MediCaring blog, on need for activism to support changing Medicare regulations in a way that allows patients for whom only palliative care will be helpful to die at home instead of in a hospital). On a similar note, see also
• Agitator’s Guide to Elder Care (MediCaring.org)
• How Doctors Die by Ken Murray (ZocaloPublicSquare.org, 11-30-11). It's not like the rest of us, but it should be. (This article was widely reprinted, in Time, the Saturday Evening Post, Boing Boing, the Washington Post (asking Is this true?), Wall Street Journal (as Why Doctors Die Differently). Clearly it struck a chord! It was also featured on The Bitter End (RadioLab program, 1-15-13). I quote: Ken Murray, a doctor who's written several articles about how doctors think about death, explains that there's a huge gap between what patients expect from life-saving interventions (such as CPR, ventilation, and feeding tubes), and what doctors think of these procedures for themselves.We turn to doctors to save our lives -- to heal us, repair us, and keep us healthy. But when it comes to the critical question of what to do when death is at hand, there seems to be a gap between what we want doctors to do for us, and what doctors want done for themselves. As part of the decades-long Johns Hopkins Precursors Study, Joseph Gallo found himself asking the study's aging doctor-subjects questions about death. Their answers, it turns out, don't sync up with the answers most of us give. Read some findings from the Precursors study.
• Between Comfort and Care, a Blurry Line (Sandeep Jauhar, Health, NY Times, 9-18-07). "The number of hospitals offering palliative medicine has nearly doubled since 2000... Today, pain, nausea and shortness of breath are properly recognized as scourges of the terminally ill, and are aggressively treated. But the medical profession still has a long way to go....Doctors need better training in how to help patients end their lives with dignity."
• Study: Doctors Choose Different Plan for Dying Patients Than for Themselves (Paul Kleyman, New American Media, 6-2-14) "[E]ven though an overwhelming majority of physicians Stanford surveyed (88.3 percent) would reject unnecessarily invasive treatment for themselves and opt instead for comfort care, patients in the United States continue to spend their last days receiving high-intensity care that is often ineffective and sometimes ordered contrary to patients’ wishes.
• How Doctors Die — It’s Not Like the Rest of Us, But It Should Be (Martin Bayne, The Voice of Aging Boomers, 3-18-13)
• A Place to Turn When a Newborn Is Fated to Die (Neela Banerjee, NY Times, 3-13-07) In the 1970s, a perinatal bereavement movement began offering parents another way to deal with the death of a child at birth, by acknowledging the grief they feel and by creating family and religious rituals around a stillbirth or early death.
• Patients Teach Doctor How to Heal at the End of Life (Paul Kleyman, New American Media, 4-3-13) "Dr. Vyjeyanthi “V.J.” Periyakoil believes that contrary to conventional wisdom, most patients don’t simply want every medical intervention that may or may not prolong their lives. Overall people want appropriate care sensitive to their quality of life and, enabling them to experience their final days as fully as possible with minimal stress for their families. [They don't] want their families burdened by the cost of their care, or by having to struggle with troubling decisions about their treatment....On the survey’s list of 12 “Most Important Factors at End of Life,” people placed the desire “to live as long as possible” down at number 10.
• Palliative & Hospice Care (New American Media articles)
• Committee on Approaching Death: Addressing Key End of Life Issues (Institute of Medicine)
• Immigrants Facing Death Without Home Hospice Support (Daniela Gerson, Alhambra Source/New American Media, 2-20-14)
• Having a hard time finding a good place to die? Consumer Reports tells you where to go. (Peter Whoriskey, Washington Post, 11-12-14). "The latest Consumer Reports takes on end-of-life care and recommends that families steer away from newer, for-profit hospices."
• How Dying Became A Multibillion-Dollar Industry (Ben Hallman, Huffington Post series, 6-19-14) Offending companies "focused on maximizing Medicare reimbursement for as many patients as possible while disregarding patients’ medical needs" -- in one case, "bumping her up from routine care to 'crisis care,' a level of more expensive, continuous coverage, even when records show she wasn’t in pain." Hospices need to be inspected as often as nursing home are for violations in safety and patient care. With some for-profit hospices "it's all about money." "Many hospice employees are being pressured into wrongfully enrolling patients and adjusting health records in order to obtain more government funding, while health care staff, who object and whistleblowers are punished."
• Terminal neglect? How some hospices treat dying patients. (Peter Whoriskey and Dan Keating, Washington Post, 5-3-14, part 1 of an ongoing series, "Business of Dying"). "While many home hospice patients require little more than weekly nursing visits, some encounter crises in which their symptoms — pain, breathing troubles, seizures and so on — flare up in ways that cannot be controlled without sustained attention. For those cases, hospices are supposed to be able to provide either “continuous” nursing care at home or inpatient care at a medical facility. But about one in six U.S. hospice agencies, serving more than 50,000 of the terminally ill, did not provide either form of crisis care to any of their patients in 2012..."
• Is that hospice safe? Infrequent inspections mean it may be impossible to know. (Peter Whoriskey, Washington Post, 6-26-14, part two of a series, "Business of Dying"). It is impossible to say precisely how many hospice companies might be cited for violations if there were more scrutiny, but a significant portion of them appear to be providing scant care, Medicare statistics and interviews show. Inspections are infrequent and are hard to monitor with at-home care.
• Huffpost misses palliative care forest for hospice trees (Generations Beat Online news) Huffpost confuses "mean" with "median." "People who may be over-treated in acute hospital care before spending their final 18.7-days in hospice, long after they might have benefited from good palliative care, face a reality quite different from the fraudulent and painful story told by HuffPost in “Hospice, Inc.” But it’s a story that needs to told along with the fear-factor reporting, lest the horrors lead merely to more “death panel” policy fallout."
• Hospice firms draining billions from Medicare (Peter Whoriskey and Dan Keating, Washington Post 12-26-13) Medicare rules have encouraged for-profit hospice companies to seek out patients who aren't actually dying. Part of a special report and series: The cost of healing: How America puts the wrong price on healthcare.
• NHPCO Responds to Washington Post 12-27-13
• Differences in Care at For-Profit Hospices (Paula Span, NY Times, 3-3-14) "The patterns in this Mount Sinai/Yale study suggest that, as the Washington Post reported in December, for-profit hospices aggressively recruit patients, keep them enrolled longer, then evict them when costs begin to endanger reimbursement."
• Hospice Care: For-Profit Has Pluses, Minuses (Michael Smith, MedPage Today 2-24-14)
• Changing the Way We Die: Compassionate End of Life Care and The Hospice Movement by Fran Smith and Sheila Himmel. Speaking on an NPR program, Smith said the commercial firms that operate hospice operations tend to "cherry-pick" the most profitable customers (long-term dementia patients).
• Hospice Care and Roto-Rooter—What Happens When For-Profits Run Hospice Care? (Ruth McCambridge, Nonprofit Quarterly, 1-9-12)
• In Hospice Care, Longer Lives Mean Money Lost (Kevin Sack, NY Times, 11-27-07) With patients living longer, the government is making hospices repay hundreds of millions of dollars to Medicare.
• Hospices Under Feds' Microscope (Bob LaMendola, Health News Florida, 7-2-13) Vitas, the nation’s largest hospice, has been accused of collecting “tens of millions of taxpayer dollars” through unjustified and inflated bills. (Vitas also owns Roto-Rooter.)
A Different Kind of Miracle (Anita Fry, Pulse, 10-11-13). Her father's terminal cancer diagnosis leaders her to realize, the hospital she is associated with needs palliative care for cancer outpatient care.
A Dying Person's Guide to Dying (Roger C. Bone, Hospice.net)
As Nurse Lay Dying, Offering Herself as Instruction in Caring (Abby Goodnough, NY Times, 1-10-13). With less than two months to live, Martha Keochareon teaches students about cancer and dying. "Perhaps more than anything, the students were learning about the challenge of managing late-stage cancer pain in a patient who had outlived her prognosis."
As Need for Palliative Care Grows, So Do Innovations (Elyse Salend, in an excellent AgeBlog story, from the American Society on Aging )
Because You've Never Died Before: Spiritual Issues at the End of Life by Kathleen J. Rusnak, who writes of the Brick Wall that separates the living from the dying--the knowledge of impending death changing the way you feel about things.
Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death (by Joan Halifax with foreword by Ira Byock)
The Beneficial Effects of Life Story and Legacy Activities by Pat McNees (Journal of Geriatric Care Management, Spring 2009). Get PDF file of journal article here (61.9KB)
Blog directory for hospice and palliative care community
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)
'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)
End of Life and Palliative Care (Robert Wood Johnson Foundation, which provides strong support for sounder policies and practices)
End of Life Care (Alan Meisel, The Hastings Center, summary of key issues in From Birth to Death and Bench to Clinic: The Hastings Center Bioethics Briefing Book for Journalists, Policymakers, and Campaigns, ed. Mary Crowley )
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).
Handbook for Mortals (full text online of consumer guide to end-of-life care by Joanne Lynn and Joan Harrold)
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.
Lessons on End-of-Life Care From a Sister’s Death (Paula Span, New old Age, NY Times, 5-22-15) Hospice gave us support and counsel, and gave Deb a peaceful death. No other cog in the health care system performs this service or is designed to. Hospice may need changes and improvements, but I don’t want to contemplate where we would have been without it, and we are nothing but grateful.
Liverpool Care Pathway for the Dying Patient (LCP)
--LCP website of the Marie Curie Palliative Care Institute
Life in the End Zone (Dr. Muriel Gillick's blog about topical issues for anyone concerned with the final phase of life). See also her book The Denial of Aging: Perpetual Youth, Eternal Life, and Other Dangerous Fantasies. Besides caring for two aging parents, she is a geriatrician, palliative care physician, and writer.
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)
Managing the Cost of Terminal Illness. Part 1: Prepare in Advance (Chris Cooper, financial planner)
• Part 2: Evaluate All Your Options
• Part 3: Consider Palliative Care (Chris Cooper)
The Medicare Hospice Benefit: A Good Fit with Managed Care (Naomi Naierman, American Hospice Foundation).
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).
Music, used in care of the dying (Growthhouse.org)
Music Therapy in Palliative Care: New Voices edited by David Aldridge, who has done a parallel book for use of music in dementia care
New York Times story of woman spending last days in grand fashion at Carlyle Hotel (with hospice care)
Palliative care resources for patients:
• Get Palliative Care.org
• National Hospice and Palliative Care Organization
• Palliative doctors
• State-by-state report card on access to palliative care in our nation's hospitals
• Stories about palliative care.
Palliative care resources for professionals:
• American Academy of Hospice and Palliative Medicine (AAHPM)
• Center to Advance Palliative Medicine (CAPC)
• The Initiative for Pediatric Palliative Care (IPPC)
• National Palliative Care Registry
• National Palliative Care Research Center
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.
Readings, prayers, and spiritual resources for those keeping vigil and giving care (Hospice.net)
Signs and Symptoms of Approaching Death (Hospice Patients Alliance)
Their Dying Wishes (Ann Neumann, Opinionator, NY Times, 3-4-15). This hospice volunteer writes: "My patients fear dying alone or in pain, and they want me to see them as they see themselves — as people who have had careers and families and rich experiences — and not as a fading patient in a bed. The truth about last requests is that by the time patients have accepted that their lives are ending, the wishes they have are often much simpler than a safari in Africa or a ride in a hot-air balloon....No two patients are alike. Every last request is specific and unique. Fulfilling them feels like a small blessing — not just to these patients, but to me."
Therapy dog provides comfort to hospice patients (David Caddell, AnnArbor.com 4-16-12)
203 days (click here to view free, online). A video by documentary filmmaker Bailey Barash. A woman makes peace with dying. 23 minutes.
The Unspoken Diagnosis: Old Age (Paula Span, The New Old Age, NY Times 12-29-11)
The Value of Reminiscence in Hospice Care (Dorothy Wholihan, RN, MSN, OCN, San Diego Hospice & Palliative Care)
“Acceptance looks like a passive state, but in reality it brings something entirely new into this world. That peace, a subtle energy vibration, is consciousness.” ~Eckhart Tolle
The quieter you become, the more you can hear.” ~ Ram Dass
“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 have seen in you what courage can be when there is no hope.”
"I’m told our hospice experience was a good one. Looking back I realize that once we called hospice, everything went smoothly—social services, medical care, bereavement counselor—everything. I learned that hospice isn’t just about the patient and pain relief. It’s also about the family and everything else connected with end-of-life. I think one of the reasons our experience was so good was because we called hospice early.
"When should you call hospice?
"Call before you think you need to."
~ Tony Levelle, from "Our Hospice Experience" (click on this link to download PDF copy of story)
"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