Hospice care and palliative care
End of life care
Care to comfort, not to cure
• Improving end-of-life care
• Frequently asked questions
• More about end-of-life care
• Finding a hospice or hospice care
• Medicare Compare (search to compare facilities, services, providers)
• How medical professionals can help terminally ill patients prepare to die
• Managing the costs of dying and end-of-life care
• Hospice care
• Palliative care
• The differences between hospice care and palliative care
• Stories from and interviews about hospice and palliative care
• Recommended measures (and issues) with hospices
• Hospice and palliative care blogs
• Books about hospice and palliative care
• Helpful organizations
Far too often people wait until the very last days to ask for "comfort care," not wanting to admit defeat. Patients who get comfort care often recover and live many more years.
• Atul Gawande on How to Improve End-Of-Life Care (WBUR). Gawande (@Atul Gawande), author of Being Mortal: Medicine and What Happens in the End, joins Here & Now's Robin Young to talk about improving end-of-life care. Many nursing homes are more like prisons, he says, when people who may have only a year left in their life still want to experience autonomy and pleasure. It's not about whether you spend more or not, it's letting them do a little more what they want. In fact, it might cost less, because given a little autonomy they may need less medication. "Safety is what we want for our loved ones; autonomy is what we want for ourselves." Gawande discusses some of the alternatives and tradeoffs for those who can't take care of themselves? Consider palliative care instead of cancer treatment -- because palliative care may extend life better than medical care, in many cases. We need to be effective counselors, and ask our loved ones what their priorities are: Do they want to try chemotherapy or other aggressive medical care that might make them worse? Or do they prefer to spend their final days enjoying life? Of the many possible choices for facing the end of life, the choices of the dying should be their own.
• Hospice isn't just about dying: too few families know how much hospice can help (Kimberly Goessele, Tennessean, 11-29-19) Every year, more than 1.5 million Americans with a terminal diagnosis choose hospice care because it provides a broad range of services tailored to meet their unique needs. Hospice care is unlike any other service in our healthcare system, and it is still not widely understood, despite being part of Medicare’s benefits since the 1980s. Sadly, many of the families we serve here in Middle Tennessee say they wish they had learned about hospice sooner.
• Katy Butler on future hospice needs, from "On the Art of Dying Well" (Rob Waters' interview, CHCF, 2-21-19) "We have a silver tsunami of the Baby Boom generation that is about to crash. I’m worried for a lot of my peers. We don’t have as many long-term stable marriages as our parents, so a lot of us don’t have that person, that central tent pole, who’s going to make home hospice possible. We’re going to need more residential hospices. Right now in nursing homes, there’s no guarantee you’re even going to be alone in the room when you’re dying. You may have some poor roommate behind a curtain trying to watch TV. It’s not humane. All hospitals and nursing homes need dying rooms that are beautiful and humane. An intensive care unit death can cost $450,000. A difficult open-heart surgery, same deal. If we have the money for that, why don’t we have the money for slow medicine that truly supports people through the toughest times in their lives?"
• 5 Questions to Ask Your Doctor (The Conversation Project, in collaboration with the Institute for Healthcare Improvement)
• Lessons on End-of-Life Care From a Sister’s Death (Paula Span, 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."
• 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
• 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."
• Last Comforts: Notes from the Forefront of Late Life Care by Ellen Rand. Haven't read this yet, but I like what she says about it: "The book grew out of one basic question that kept nagging at me not long after I became a hospice volunteer: Why do people enter into hospice care so late in the course of their illness? ...this question drove me to begin researching the current realities of end-of-life care. I wanted to learn: how can we do this better?"
• Slow Medicine (Katy Butler's Facebook group) You have to ask for approval to join the group but it didn't take long to get it.)
• A Smile at the End of Life: When a dying man wants new front teeth, what do you do? ("Cranberries," End of Life Stories, 8-10-17) A dentist's wonderful gift.
• How Can We Increase the Use of Palliative Care In Medicare? (Donald Taylor, Matthew Harker, Andrew Olson, and Janet Bull, Health Affairs blog, 2-13-17). A 93-year-old woman dies of congestive heart failure five weeks after undergoing surgery to receive a pacemaker. Alternative care options "were not offered to her and her family in a timely manner, at least in part because of Medicare’s long-standing payment rules that value procedures over discussion of goals and alleviation of symptoms. Medicare paid for the surgery and pacemaker with no questions asked, even though the procedure was, in retrospect, unproductive, wasteful, and even harmful from the family’s perspective." The better alternative would have included palliative care, which helps patients and family members to call a “timeout,” step back, and decide what course of treatment is best for addressing symptoms and deteriorating quality of life in persons with advanced, life-limiting illness. However, there was no palliative care team available to disrupt the default, “do everything” course of care during this family member’s last hospitalization. Nor was such care offered at any of the four previous hospital visits she experienced in 2016, or through her primary and specialist care providers. Medicare will cover some elements of palliative care, but payments are generally less than the cost of delivering the service because Medicare’s approach to reimbursement values procedures over time spent with patients and families."
• The ‘It’ in Palliative Care (Donald H Taylor Jr, ) "The August 2010 publication of a randomized control trial (RCT) that showed that patients receiving early palliative care had better quality of life, lower resource use (costs), and longer life expectancy (~12 months for treatment v. ~9 months for controls of patients with stage IV lung cancer) garnered a lot of attention.... The intervention was simply early exposure to palliative care, which more commonly comes very late in the disease process." "Variation in time spent doesn’t mean the care is bad, it is just not as straightforward as delivering a pharmaceutical, in large part because a key aspect of palliative care is listening to patient concerns and helping them to express and clarify their goals of care. In fact, variation implies it was patient-specific, which is a key point of palliative care." See also Prime Time for Palliative Care? (Don Taylor, The Incidental Economist, 3-18-11) It is prime time for palliative care in the overall health care system because of the body of evidence that it benefits patients and may reduce costs.
• Dying is hard. Death doulas want to help make it easier. (Ellen McCarthy, WaPo, 7-22-16) The work of a death doula is primarily about presence. He is there to ease the passage from this world to the next. Especially with patients who can no longer speak, Craig Phillips "has learned to slip his hand beneath theirs, palm to palm, rather than rest it on top. This way, he says, 'you get an understanding of how well wanted you are.' When his grip is returned, he knows that he is welcome." "Phillips operates alone, but he is part of a growing army of volunteers and professionals who call themselves death doulas. (Some, opposed to that term, prefer end-of-life doulas, soul midwives or transition coaches.)"
• How to plan for a good death (Celia and Jenny Kitzinger, The Guardian, 6-19-15) Sheila Kitzinger, the natural childbirth activist who died in April, pioneered the idea of birth plans. Her daughters, Celia and Jenny, describe how their mother made a death plan – so she could die at home according to her own wishes. The short advance decision (AD) she had written some years earlier was a single paragraph (signed and witnessed, and legally binding on her carers and medical professionals). It declared: “If the time comes when I can no longer take part in decisions for my own future, I want to receive whatever quantity of drugs can keep me free from pain or distress, even if death is hastened. If there is no reasonable prospect of recovery I do not consent to be kept alive by artificial means. I do not wish to be transferred to hospital and should like to die in my own bed.” She later added, one of her last sentences: "“I decline antibiotics if I get pneumonia.”
• Can't We Talk about Something More Pleasant?: A Memoir by Roz Chast. (Readers suggest buying the print book, not Kindle, so you can see the cartoons better). Washington Post: “The book provides an unflinching look at the increasingly common struggles faced by adult children caring for parents as they age and lose their health and independence,” said the Heinz statement, noting that Chast “details the realities of aging and end-of-life care—from dealing with the tragic effects of dementia to managing the high costs of elder care to reconciling her own personal feelings of guilt, exhaustion and love.” (Referring to the $250,000 Heinz award Chast received.) "Spanning the last several years of their lives and told through four-color cartoons, family photos, and documents, and a narrative as rife with laughs as it is with tears, Chast's memoir is both comfort and comic relief for anyone experiencing the life-altering loss of elderly parents."
• 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. See also 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.
• Conscious Dying (a Facebook community and page)
• Lessons on End-of-Life Care From a Sister’s Death (Paula Span, NY Times, 5-22-15)
• A Bittersweet Season: Caring for Our Aging Parents--and Ourselves by Jane Gross
• Helping Patients and Doctors Talk About Death (NY Times editorial, 7-25-15) "Patients who had end-of-life discussions with doctors and those who created living wills, which describe the kind of care a person should receive, were most able to avoid having treatments that they did not want imposed on them. Patients who relied solely on designated health care proxies to make decisions if they were incapacitated were often subjected to aggressive last-minute care."
• 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), which asks five basic questions:
* "On a scale of 1 to 5, where do you fall on this continuum (with 1 being "let me die without medical intervention" and 5 being "Don't give up on me no matter what, try any proven and unproven interventon possible").
* Is there were a choice, would you prefer to die at home, or in a hospital?
* Could a loved one correctly describe how you'd like to be treated in the case of a terminal illness?
* Is there someone you trust whom you've appointed to advocate on your behalf when the time is near?
* Have you completed any of the following: written a living will, appointed a health care power of attorney, or competed an advance directive?"
• What doctors know about death that the rest of us don’t (Danielle Teller, Quartz, 7-12-15) "The narratives our society uses for death are not just a problem for surviving family members, they are perhaps an even greater problem for the dying. We want to believe that death is optional, so we don’t talk about it, and we don’t make plans for our deaths. When diagnosed with terminal illness, we focus on the fight, not on making our exit from the world as graceful as possible. When our family members are on their deathbeds, we show our love for them by lauding their courage, by not “giving up,” and by exhorting physicians to “do everything.” The secret doctors know is that the stories aren’t true. There’s nothing more noble about dying from cancer than from alcoholism. There isn’t a battle against death to be fought, just treatments to endure when the disease is treatable and symptoms to endure when the treatments are futile. Death has always been inevitable, but once their deaths are imminent, doctors just want to be comfortable and to spend the last days with family. It turns out that this is what most of us want, and we can have it if we can just bring ourselves to let go of narratives that don’t make sense and get more comfortable with the truth."
• End of life: A guide, a free PDF book, online, for people in the final stages of their life, and for their carers ( Macmillan Cancer Care and Marie Curie Cancer Care)
• Advance directives, living wills, Medicare, and other practical matters
• 10 FAQs: Medicare’s Role in End-of-Life Care (Kaiser Family Foundation)
• When to Refer to Hospice (PDF, Lisa Wayman, for ADEC)
• 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."
• End of Life: Helping With Comfort and Care (National Institute of Aging)
• ‘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." (Is this related to more hospices being for-profit now?)
• 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)
• 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."
• 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)
• Knowing How Doctors Die Can Change End-Of-Life Discussions (Stephanie O'Neill, Shots, NPR, 7-6-15) "It was about 10 years ago, after a colleague had died swiftly and peacefully, that Dr. Ken Murray first noticed doctors die differently than the rest of us."
• 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)
• Fighting to Honor a Father’s Last Wish: To Die at Home (Nina Bernstein, NY Times, 9-25-14) Maureen Stefanides wanted to fulfill her father's request after long nursing home stays left him weak and unhappy, but the forces of the health care system bounced him from one expensive form of inpatient care to another.
• Government raising bar on ratings of nursing homes (Julie Appleby, Washington Post, 2-16-15). About Nursing Home Compare: "...the star ratings, which debuted in December 2008, are lauded as an important tool, critics say they rely too heavily on self-reported data and allow a majority of homes to score high ratings." They don't fare so well on inspection reports.
• Nursing Home Compare (read Appleby article first)
• Nursing Home Compare data
• In Alzheimer’s Cases, Financial Ruin and Abuse Are Always Lurking (Paul Sullivan, NY Times, 1-30-15) "[N]ursing home care for an Alzheimer’s patient can run around $80,000 a year and last for a decade or more, depending on the person’s age....adult children also don’t always respect their parents’ wishes. Consider when a person with Alzheimer’s wants to have a say in when he or she dies....Just as vexing is the abuse of someone with Alzheimer’s by a family member, caregiver or grifter."
• A Fruitless Fight to Die at Home (Letters to the Editor, NY Times, 10-5-14)
• 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)
• My right to death with dignity (Brittany Maynard, CNN, 10-7-14) Diagnosed with terminal cancer, turning 30, a young woman chooses to die on her own terms, "Having this choice at the end of my life has become incredibly important. It has given me a sense of peace during a tumultuous time that otherwise would be dominated by fear, uncertainty and pain."
• As End Nears, Cancer Patient Struggles With Cost of Long Term Care (Eileen Hadidian, New American Media, 11-26-12)
• Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Illness by Hank Dunn
• My Mother, Your Mother: Embracing "Slow Medicine," the Compassionate Approach to Caring for Your Aging Loved Ones by Dennis McCullough
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.
• Communicating End-of-Life Care Wishes With Clinicians and Family (Nursing@Georgetown, 6-17-19) Examples of questions that prompt care decisions: What are my options? What does each option look like in practice? If your heart stops beating or if you stop breathing, would you like to receive CPR? In the event that you cannot eat, swallow, digest properly, etc., do you want to use a feeding tube for nutrition? If you can no longer breathe properly or need to clear your airway, are you comfortable receiving a tracheostomy? How do you want your pain controlled? If I choose this option, can I change my mind later?
• The Conversation Starter Kit (The Conversation Project) Who Will Speak For You? How to choose and be a health care proxy (or agent). See also Pediatric Conversation Starter Kit designed to help parents of seriously ill children who want guidance about “having the conversation” with their children.
• Choosing a Hospice: 16 Questions to Ask (Naomi Naierman and Marsha Nelson, Hospice Foundation of America)
• Frequently asked questions about hospice care (FAQs, NHPCO)
• Hospice Care Services - Most Commonly Asked Questions (video, HospiceAdvantage)
• A checklist of questions about hospice care ( questions to ask as you try to find the right hospice service for someone, from the National Caregivers Alliance)
• What is palliative medicine? Frequently asked questions about palliative care (Palliative Doctors, "compassionate care at any stage of an illness")
• 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."
• Choosing a hospice and FAQs about hospice care (Hospice Foundation of America)
• Shedding New Light On Hospice Care: No Need To Wait For The ‘Brink Of Death’ (Judith Graham, KHN, 9-7-17) 'Although hospices now serve more than 1.4 million people a year, this specialized type of care, meant for people with six months or less to live, continues to evoke resistance, fear and misunderstanding. “The biggest misperception about hospice is that it’s ‘brink-of-death care,’” said Patricia Mehnert, a longtime hospice nurse and interim chief executive officer of TRU Community Care, the first hospice in Colorado....In fact, hospice care often makes a considerable difference for those with months to live....New research confirms that hospice patients report better pain control, more satisfaction with their care and fewer deaths in the hospital or intensive care units than other people with similarly short life expectancies....It’s fairly well understood that patients forgo curative therapies in favor of comfort care when they enter hospice....Four levels of care: Hospice providers are required to offer routine care in patients’ homes (this includes seniors who reside in assisted living or nursing homes); continuous care at home for people with out-of-control symptoms such as pain or breathing problems; inpatient respite for families that need a break from caring for a loved one; and general inpatient care for medical crises that can’t be handled in any other setting....Routine care at home is by far the most common service, accounting for about 94 percent of hospice care....What families and patients often don’t realize: Hospice staff will not be in the home every day, around the clock.' (For more answers to questions about hospices work, read the whole article!)
• Patients served by hospice in the US (1982 to 2013). Just the numbers. Graphed.
• 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)
• History of hospice care (NHPCO)
• 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)
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 type in your location at Hospice Compare (Medicare.gov, Find a hospice agency). Or Google hospices and your zip code (which may turn up hospices that do not belong to NHPCO as well as those that do).
• National Hospice and Palliative Care Organization (NHPCO) 1-800-658-8898 (toll-free)
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?
What should you look for when evaluating a hospice? Is the hospice accredited? Has the hospice been surveyed by a state or federal oversight organization? If so, when? What were the results? How many patients does the hospice program care for? What is the typical caseload?
• Ten Things You Didn't Know About Hospice (Silverado, South Houston Hospice, 12-13-13) Hospice is not a place—it’s high-quality care that focuses on comfort and quality of life. Hospice is paid for by Medicare, Medicaid, and most insurance plans. Fear of costs should never prevent a person from accessing hospice care. Research has shown that the majority of Americans would prefer to be at home at the end of life—hospice makes this possible for most people. Research has shown that people receiving hospice care can live longer than similar patients who do not opt for hospice.
• Is one hospice the same as any other? No. Why it’s important to choose carefully. (Peter Whoriskey, Washington Post, 9-3-14)
• Suggested Questions to Ask When Choosing a Hospice (Medicare)
• Hospice Compare (Medicare, to help you find a local hospice) Tells you if those near you are nonprofit or for-profit, among other things. According to the Medicare Payment Advisory Commission, three-fourths or more of the hospices scored at least 91 percent on six measures now in use:
---Patients or caregivers were asked about treatment preferences like hospitalization and resuscitation at the beginning of hospice care
---Patients or caregivers were asked about their beliefs and values at the beginning of hospice care.
---Patients were checked for pain at the beginning of hospice care.
---Patients were checked for shortness of breath at the beginning of hospice care.
---Patients received timely treatment for shortness of breath.
---Patients who were taking opioid pain medication were offered care for constipation. (Thanks to Association for Health Care Journalists, which provides tips on how health care journalists can better cover local hospices.) It is particularly important that hospices take steps to satisfactorily address problems with pain or shortness of breath, and provide relief from constipation.)
• How For-Profit Hospices Compare to Nonprofit Hospices (Angela Morrow, RN, VeryWellHealth, 9-8-17) Why patient characteristics differ between the two types of hospice. Among other things, for-profit hospices prefer patients who require less care, which means they prefer dementia patients (long-term, low-hassle) to cancer patients (who "need more expensive care with intensive pain and symptom management"). Also, "for-profit hospices had a higher proportion of patients residing in nursing homes and a lower proportion residing at home," according to research published in the Journal of the American Medical Association (JAMA).
• Differences in Care at For-Profit Hospices (Paula Span, NY Times, 3-3-14) "A study published recently in JAMA Internal Medicine has found that for-profit hospices have significantly higher disenrollment rates than nonprofits, among other disparities." In other words, some "patients are getting bounced as corporate bottom lines have come to matter more."
• ARCH National Respite Network and Resource Center When you need a break from caring for someone who is dying, if you're lucky there will be day care facilities, or you can hire someone to come manage care in your home. Check ARCH's National Respite Locator or search the site to learn about potential options in your community. The U.S. Dept. of Veterans Affairs also runs some adult day care centers.
• 5 things you should know about Medicare’s new end-of-life discussions (Philip Moeller, PBS, 1-20-16) Questions answered: 1) How much will Medicare pay doctors for these visits? 2) Does this amount represent 100 percent of the visit’s costs, or do Medicare beneficiaries have normal copays? 3) Can doctors combine these appointments with other patient activity with these other visits? ) If the doctor’s office is not familiar with this new benefit, can you provide the names and online locations of any forms that doctors must complete to be compensated by Medicare for these appointments?
• Three issues of hospice (Robert Killeen, GeriPal, 7-20-10) 1) What is the "right" answer? (e.g., Chemo or hospice?) (2) The fundamentals of depression. (3) The dispersal of anguish. Bottom line: Good hospice and palliative care professionals know how to help you deal with these issues.
• 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.
• How to Create a Peaceful At-Home Hospice for Your Loved One (Home Advisor)
• 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.
• Coming Full Circle, Doulas Cradle The Dying (Bruce Horovitz, Kaiser Health News, 4-10-17) Doula programs — male and female volunteers and paid certified staff — are increasingly helping elderly patients fulfill wishes to die at home rather than in hospitals or nursing homes. The doula association trains and certifies professional end-of-life doulas. The end-of-life doula movement is supported by the National Hospice and Palliative Care Organization. "While most hospice workers focus on the physical needs of the dying, doulas offer emotional and spiritual support. They often help the dying reflect on life’s meaning. They conduct comforting rituals, including light touch and holding hands."
Caring for the Dying: The Doula Approach to a Meaningful Death by Henry Fersko-Weiss. Sacred moments surrounding the last days of life are explicitly delineated in this easy-to-read book which is full of stories from the author’s experience as a professional doula."~ Roberta Temes, author of Living with an empty chair: A guide through grief
• 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)
• Find a provider Visiting Nurse Association)
Blog directory (National Hospice and Palliative Care Organization)
• An Artful Way to Teach About Hospice (Ellen Rand, Last Comforts)
• What is Hospice? Stories from Patients and Care Givers, Part 1 (Hospice Foundation of America) The chief benefit of hospice care at home is that the patient can focus on living. Most patients prefer to die at home and hospice care makes that possible for many patients. Part 2, a patient celebrates being kicked out of hospice, when her condition improves, knowing she can ask for the services again, when she needs them. This video explains what hospice is and is not. You hear from actual patients, families and caregivers why hospice is 'something more.' What that 'something more' is depends on what the patient believes. "Not all people who are spiritual are religious." Chaplains offer a listening presence.
• Hospice prepares families, patients for 'the long dance' (Luanne Rife | The Roanoke Times, 9-10-17) For years, Shirley Ballentine had confidently nursed hospital patients before wading into hospice care. “They’ll say, ‘I’m not ready.’ And I say, ‘Good to hear. I’m here to help you live with what’s dancing in your body right now,’” she said. “‘We don’t know if it’s going to be a long dance or a short dance. I’m voting for the long dance, and we have a lot of dance partners here for you. So let’s make this good.’”
• Hospice house advocates seek peaceful settings for final days (Luanne Rife | The Roanoke Times, 9-11-17) Death doesn’t frighten Christine Slade nearly as much as dying. "It’s a universal experience, and we can get this one right. We have to build a safe haven.”—Tina Smusz, retired doctor and vice president of the Sojourn board
• Introversion and Hospice & Palliative Care: Insights from ‘Quiet’ by Susan Cain (Ben Skoch, Pallimed blog, 2-19) In reading Quiet: The Power of Introverts in a World That Can’t Stop Talking by Susan Kain, Skoch notices some parallels between the natural tendencies of introverts and the work required in the world of Hospice and Palliative Medicine. Janice Dorn told her that “introverts…are more successful at regulating their feelings…they protect themselves better from the downside,” largely because of how they are wired, while "extroverts are more excitable and are more likely to 'find themselves in an emotional state we might call ‘buzz.’ So perhaps introverts are better biologically equipped to handle sad and tough conversations." Introverts may find it easier to listen.
• Susan Cain's TED talk: The Power of Introverts (listen and/or read transcript)
• Amid For-Profit Surge, Rural Hospice Has Offered Free Care for 40 Years (JoNel Aleccia, Kaiser Health News, 10-20-17)
• Some Good Days. - The Story of a childrens hospice (video, Little Bridge House, North Devon, 2000)
• Faces of Palliative Care (video produced for University of British Columbia, 7-21-14) (Palliative care--a place where people come to die, but learn to live; )
• Hospice Care: How Does It Work? (video, Dr. Bob interviews Dr. Gregory Phelps, medical director, UT hospice in Knoxville, Tennessee)
• What Hospice Nurses Know: Dying and Afterlife Questions and Ansers (video, Staff of Hospice of Missoula, Aug. 2014)
• A hospice nurse tells her personal story (video, Beth Hurley, Patriot Ledger, 3-31-10) Beth Hurley tells of experiencing the relief hospice provides, then becomes a hospice nurse herself.
• Carolyn's hospice patient story (video, Carolyn, a hospice nurse with Dignity Hospice tells the story of one patient)
• Dying at Home in an Opioid Crisis: Hospices Grapple With Stolen Meds (Melissa Bailey, Kaiser Health News, 8-22-17) Hospices have largely been exempt from the national crackdown on opioid prescriptions because dying people may need high doses of opioids. But as the nation’s opioid epidemic continues, some experts say hospices aren’t doing enough to identify families and staff who might be stealing pills. Washington Post headline for same story: Dying at home in pain doesn't keep relatives from stealing the pills.
• Frequently Asked Questions About Hospice and Palliative Care (Palliative Doctors) Palliative care is compassionate care -- for people of any age, and at any stage in illness, whether that illness is curable, chronic, or life threatening.
• Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer (Jennifer S. Temel, M.D., Joseph A. Greer, and others, NEJM, 8-19-10). "Among patients with metastatic non–small-cell lung cancer, early palliative care led to significant improvements in both quality of life and mood. As compared with patients receiving standard care, patients receiving early palliative care had less aggressive care at the end of life but longer survival."
• Who Pays For Palliative Care (Start the Conversation)"Who pays for palliative care is a good question to ask when speaking to your doctor about starting palliative care. It is often handled much like a referral to a cardiologist, neurologist or other specialist and may be covered by Medicare, Medicaid or your private insurance. Some illnesses and diagnosis may limit the ability to access care out of the home. In these cases, palliative care can be provided in the home by skilled nurses and therapists. Talk to your doctor to request a referral for home-based palliative care which is covered by Medicare under some circumstances." Discusses what to expect from Medicare, Medicaid, and private insurance, HMOs, and managed care programs and answers many frequently asked questions.
• From Specialty to Shortage (Debra Bradley Ruder, Harvard Magazine, March-April 2015) “Our main procedure in palliative care is difficult communication,” says professor of psychiatry and medicine Susan Block. Palliative care emerged with the hospice movement of the 1960s, but it wasn’t until 2006, after a strategic campaign led by Block and other advocates, that hospice and palliative medicine became a defined medical specialty. The move marked “a critical step in achieving legitimacy and a seat at the table in American medicine,” says Block. Palliative care is associated with higher quality of life and lower costs through fewer and shorter hospital stays, less intensive treatments, and more hospice use, so it’s an attractive option in the context of healthcare reform. But there is already a shortage of palliative-care trained physicians; one study estimates a gap of at least 6,000.
• New state report card shows palliative care services uneven across the U.S. (Liz Seegert, Covering Health, AHCJ, 10-17-19) Access to palliative care across the U.S. varies widely. It often depends more upon accidents of geography, whether a hospital is for-profit or nonprofit, and hospital size than it does on the needs of patients living with a serious illness, and their families, according to a new state-by-state report card from the Center to Advance Palliative Care (CAPC). Growth continued in the overall number of hospital palliative care teams, with 72% of hospitals with 50+ beds reporting such a team. the overall national grade in 2019 is a B, unchanged from 2015, according to the report. One-third of the states received a grade of C or D. Check this interactive map to see how your state rates. Palliative care services are more likely to be provided in large hospitals than in small, in nonprofit hospitals than in for-profit hospitals, in urban areas than in rural areas.
• Demand Grows For Palliative Care (Michelle Andrews, KHN, 3-29-11)
• Expanding Palliative and Hospice Care Programs (How the Duke Endowment is doing so in North Carolina)
• 2011 Public Opinion Research on Palliative Care (research supported by the Center to Advance Palliative Care, the American Cancer Society, and the American Cancer Society Cancer Action Network) Consumers on the whole are unaware of palliative care, but once they are aware of it they want access to it for serious illness. Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness -- whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.
• Five Ways to Pay: Palliative Care Payment Options for Plans and Providers (Nancy Wise and Dave Briere, California Health Care Foundation, Sept. 2015). Brief discussion of five examples of payment models: Fee for service, outcomes-based reimbursement ("pay for performance"), prepaid or capitated reimbursement, bundled payment, and shared savings model.
• Next Generation of Palliative Care: Community Models Offer Services Outside the Hospital ( Larry Beresford, Kathleen Kerr, California Health Care Foundation, 11-14-12) Acute care hospitals have been establishing palliative programs at a rapid pace; the United States now has more than 1,600 of these team-based programs that focus on relieving symptoms and improving quality of life for patients with serious illness. But when patients leave the hospital setting, the lack of community-based palliative care (CBPC) becomes a problem. This report looks at emerging palliative care models that aim to fill the gaps, including hospice=based models, outpatient clinics, medical groups, and integrated delivery systems (e.g., Kaiser Permanente and Veterans Affairs).
• Palliative Care Leadership Centers Are Key to the Diffusion of Palliative Care Innovation (J. Brian Cassel, Brynn Bowman, Maggie Rogers, Lynn H. Spragens, Diane E. Meier, Health Affairs, Feb. 2018) Between 2000 and 2015 the proportion of US hospitals with more than fifty beds that had palliative care programs tripled, from 25 percent to 75 percent. Authors describe the dissemination strategies of the Center to Advance Palliative Care in terms of social entrepreneurship, especially its hallmark training initiative, Palliative Care Leadership Centers. They conclude with lessons learned about the role of purposeful technical assistance in promoting the rapid diffusion of high-value health care innovation.
• 8 Facts to Know About Palliative Care (Sarah Baldauf, US News, 9-25-09) Misconceptions abound. Patients and families need not be afraid to ask for help.
Why you should engage palliative care sooner rather than later: “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, in Being Mortal: Medicine and What Matters in the End
(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.)
• National Hospice and Palliative Care Organization (NHPCO) 1-800-658-8898 (toll-free)
• Aid-In-Dying Laws Only Accentuate Need For Palliative Care, Providers Say (Anna Gorman, Kaiser Health News, 12-1-15) KHN staff writer Anna Gorman reports: "More times than she can count, Dr. Carin van Zyl has heard terminally ill patients beg to die. They tell her they can’t handle the pain, that the nausea is unbearable and the anxiety overwhelming. If she were in the same situation, she too would want life-ending medication, even though she doubts she would ever take it. 'I would want an escape hatch,' she said."
• What Palliative Care Should Look Like (Ellen Ryan, Last Comforts, 11-17-15) If you are seriously ill, or taking care of someone who is, this is the kind of care you should look for (and she lists them).
• Focusing In On Palliative Care (Jane Lindholm and Sam Gale Rosen. Vermont Public Radio, 6-14-16) Audio. 30 minutes. Caring to provide comfort. How do we incorporate this into medicine?
Palliative Care Can Help Children and Families Navigate Bewildering Medical Terrain (Joanne Kenen, Kaiser Health News and Boston Globe, 3-28-11) Getting help while continuing treatment.
"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). As of January 2016, you and your doctor can discuss your goals, beliefs, values, and fears should you become seriously ill – and Medicare will actually reimburse for this service. (Not a lot, but that's progress.) Make sure your doctor knows how you want to end your life -- and more important, how you do NOT want to end your life.
• Palliative Care Versus Hospice Care (video, Lee Memorial Health System) Hospice is end-of-life care, when a patient can no longer benefit from curative measures, or have failed curative measures and are truly at the end of life and only need supportive care. Palliative care runs concurrent with a patient's medical illness, even in curative phases, such as being treated for heart failure, chronic lung disease, or stroke or any illness that is long term and debilitating. Both approaches take team approach to everything from pain management to helping them cope with their condition, focusing on quality of life.
Hospice is an insurance benefit, but with it come some regulations--including not to pursue life-extending treatments, says Dr. Robert Gramling, Chair in Palliative Medicine at the University of Vermont College of Medicine. Palliative care is primarily a hospital benefit, but Gramling and others are studying how to extend it beyond the hospital.
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. Palliative care began in the hospice movement, but doesn't require abandoning all curative treatments and doesn't cover just the last six months of life. Its focus on pain management also makes it more profitable than hospice care. But although Medicare Part B pays for some of the provider visits and treatments associated with palliative care, as of early 2017 it reimburses procedures more amply than time spent with patients -- a bias that inadequately "compensates the coordinated approach to delivering...time-intensive, procedure-light care" more suited to many end-of-life situations. In short, "the current Medicare payment design discourages palliative care." (See
How Can We Increase The Use Of Palliative Care In Medicare? (Donald Taylor, Matthew Harker, Andrew Olson, and Janet Bull, Health Affairs blog, 2-13-17)
• Palliative Care Beyond Hospice Is Spreading to More States (Michael Ollove, Stateline, Pew, 5-29-19) Now more states are taking steps to extend such coverage to millions more people. They are extending palliative care benefits to adult Medicaid beneficiaries who are not necessarily close to death, mandating that providers tell patients that palliative care is available when it might be of some benefit, and requiring palliative care training for doctors. Maryland in 2017 became the first state to require all hospitals with more than 50 beds to provide palliative care services.
• Get Palliative Care (https://getpalliativecare.org/ ). A guide to the benefits of palliative care medicine.
• End of Life: Helping With Comfort and Care (National Institute of Aging) Helpful chart showing differences between hospice and palliative.
• Medicare Care Choices Model. Through the Medicare Care Choices Model, the Centers for Medicare & Medicaid Services (CMS) will provide a new option for Medicare beneficiaries to receive palliative care services from certain hospice providers while concurrently receiving services provided by their curative care providers. CMS will evaluate whether providing hospice services can improve the quality of life and care received by Medicare beneficiaries, increase patient satisfaction, and reduce Medicare expenditures.
• 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."
• Most hospital palliative-care programs don’t have enough staff (Michelle Andrews, WaPo, 10-10-16) "In the September issue of Health Affairs, an analysis of 410 palliative-care programs found that only 25 percent funded teams in 2013 that included a physician, an advanced practice or registered nurse, a social worker and a chaplain. Those four positions are recommended by the Joint Commission, which sets hospital standards, including those for accreditation. If “unfunded” staffers were counted — those who were on loan from other units, for example — the figure rose to 39 percent."
• ‘Pre-Hospice’ Saves Money By Keeping People At Home Near The End Of Life (Anna Gorman, Kaiser Health News, 3-27-17) A pre-hospice program called Transitions, in San Diego, is designed to give elderly patients the care they want at home and keep them out of the hospital. "Social workers and nurses from Sharp regularly visit patients in their homes to explain what they can expect in their final years, help them make end-of-life plans and teach them how to better manage their diseases. Physicians track their health and scrap unnecessary medications. Unlike hospice care, patients don’t need to have a prognosis of six months or less, and they can continue getting curative treatment for their illnesses, not just for symptoms. Before the Transitions program started, the only option for many patients in a health crisis was to call 911 and be rushed to the emergency room. Now, they have round-the-clock access to nurses, one phone call away....Transitions was among the first of its kind, but several such programs, formally known as home-based palliative care, have since opened around the country. They are part of a broader push to improve people’s health and reduce spending through better coordination of care and more treatment outside hospital walls. But a huge barrier stands in the way of pre-hospice programs: There is no clear way to pay for them....In recent years, however, pressure has mounted to continue moving away from traditional payment systems. The Affordable Care Act has established new rules and pilot programs that reward the quality rather than the quantity of care."
• Hospice vs. Palliative Care (National Caregivers Library)
• What Will It Take to MEASURE WHAT MATTERS in Hospice and Palliative Medicine? (Joe Rotella, American Academy of Hospice and Palliative Medicine, Fall 2017). Measure What Matters is a group organized by the American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Nurses Association. Here are their
Top Ten Recommended Measures for Hospice and Palliative Medicine
---Palliative care and hospice patients receive comprehensive assessment (physical, psychological, social, spiritual, and functional) soon after admission.
---Seriously ill palliative care and hospice patients are screened for pain, dyspnea, nausea, and constipation on admission.
---Seriously ill palliative care and hospice patients who screen positive for moderate or worse pain receive treatment within 24 hours.
---Patients with advanced or life-threatening illness are screened for dyspnea, and if present at moderate or worse degree, should begin on a plan to manage it.4
---Seriously ill palliative care and hospice patients have documented discussion regarding emotional needs.
---Hospice patients have documented discussion of spiritual concerns or preference not to discuss them.
---Seriously ill palliative care and hospice patients have documentation of surrogate decision-maker’s name and contact info or absence of surrogate.
---Seriously ill palliative care and hospice patients have documentation of their preferences for life-sustaining treatments.
---Vulnerable elders with documented preferences to withhold or withdraw life-sustaining treatments have their preferences followed.
---Palliative care and hospice patients or their families are asked about their experience of care using a relevant survey.
• ‘No One Is Coming’: Hospice Patients Abandoned At Death’s Door (JoNel Aleccia and Melissa Bailey, Time magazine and Kaiser Health News, 10-26-17) As her husband lay moaning in pain from the cancer riddling his body, Patricia Martin searched frantically through his medical bag, looking for a syringe. She had already called the hospice twice, demanding liquid methadone to ease the agony of Dr. Robert Martin, 66. A family practice physician known to everyone as “Dr. Bob,” he had served this small, remote community for more than 30 years. But the doctor in charge at Mat-Su Regional Home Health & Hospice wasn’t responding.
• To Grace Lopez with love — and apologies that your end wasn’t better (Steve Lopez, Los Angeles Times, 1-19-19) "In our rapidly aging country, more than a million older Americans receive hospice care each year. It’s covered by Medicare, and hospitals often recommend it when they know death is near and have nothing left to offer. In retrospect, we could have done some advance research, but like a lot of families, we hadn’t and so had to scramble, making quick decisions at a time we were already overwhelmed and trying to keep grief at bay....
This form of end-of-life care began several decades ago as a small nonprofit enterprise and social movement designed to allow terminally ill patients to unplug the wires and tubes and die peacefully in non-hospital settings. Today, with support from Medicare and with an aging boomer population, it has grown into a multibillion-dollar, mostly for-profit industry, with huge national corporations dominating. Medicare now writes roughly $17 billion a year in checks to hospice agencies. But recent years have seen a spate of massive Medicare billing-fraud cases against hospice agencies, and last year, the federal Office of the Inspector General released the results of an industry probe that found evidence of shoddy care, billing for services never provided and enrolling patients not eligible for hospice care....I encourage you to share your own hospice experiences with me. I’ve been talking to local and national authorities about the strengths and weaknesses of hospice care and about their recommended reforms, and I’ll have more on that in coming weeks. email@example.com
• When hospice care goes wrong, where can you turn? (Steve Lopez, Los Angeles Times, 2-16-19) 'Roughly 80% of hospice agencies, records show, are not reviewed and recertified by the state. Instead, Connors said, they opt to pay private accreditation companies to evaluate their performance. That’s allowable, Connors said, but it’s a system fraught with potential for “huge conflicts of interest.”...But boomers are headed for the finish line in greater numbers than ever without the benefit of adequate oversight of the hospice industry and without enough information to choose the right agency.
• Peeking Up from the Rabbit Hole (Death Nurse, Feb 2019) "The biggest hospice corporations are rifling the silverware, counting the deck chairs, eating the stores, & have found all the liquor. Watch what happens to the ship, passengers, & crew.
• Hospice in crisis (Joanne Kenen, The Agenda: Aging in America, Politico, 9-27-17) The most important end-of-life movement in a generation struggles in an era of changing families and prolonged deaths.
• VIDEO: The end-of-life conundrum (Politico, 10-13-17) What does America need to grapple with most as the population ages? Our safety net has one great hole: Late-life care, the expensive middle ground between living independently at home, and Medicare-covered time in the hospital. Many families and shocked and blindsided by the costs when the need arises, and our policymakers just haven't reckoned with the problem on a national scale. Four national experts on the biggest gap we now face.
• Read Past the Headline (NHPCO Updater, National Hospice and Palliative Care Organization,9-28-17) Despite an unfortunate and misleading headline that appeared in Politico yesterday, “Hospice in crisis,” the article is actually a thoughtful look at what we as a provider community face in caring for people at the end of life. Kenen explores how demographic, competitive and public policy changes are challenging the hospice industry
• 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."
• Amid For-Profit Surge, Rural Hospice Has Offered Free Care for 40 Years (JoNel Aleccia, Kaiser Health News, 10-20-17) "In a nation where Medicare pays nearly $16 billion a year for hospice care, and nearly two-thirds of providers are for-profit businesses, the tiny Washington state agency is an outlier. Since 1978, the hospice founded by Crumb — a mother of 10 and devoted Catholic — has offered free end-of-life care to residents of Port Angeles and the surrounding area....Crumb and her successors have refused to accept federal funding or private insurance, relying instead on a mostly volunteer staff and community donations to keep the hospice going...There was pressure in the early years to “take the money,” as Crumb put it. But she had little use for the regulations that accompanied federal Medicare reimbursement starting in 1982....Patients don’t have to meet Medicare’s criteria of having six months or less to live to be enrolled, though most do. They can keep their own doctors instead of turning over care to a hospice physician. If families need medical equipment, the hospice supplies it for free....Crumb’s refusal to take federal funds put her at odds with the for-profit hospice industry, which lobbied state lawmakers in 1992 to eliminate an exemption that allowed volunteer hospices to remain unlicensed."
• 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."
• Hospices Should Improve Their Election Statements and Certifications of Terminal Illness . Report on a study by the Office of Inspector General, U.S. Dept. of Health & Human Services. Findings describing in next couple of articles.
• Report Uncovers Widespread Medicare Fraud in Hospice Care (Eric Pianin, The Fiscal Times, 9-18-16) The HHS report linked to above "claims some unscrupulous hospice operators, doctors and staff are aggressively recruiting patients for their programs in an effort to maximize profits – even when in some cases the patients shouldn’t be in hospice. The improper and fraudulent activities amount to hundreds of millions of dollars....in a number of cases, the patients outlived standard hospice care, which usually assumes a patient won’t live much longer than six months. That suggests that the patients were inappropriate candidates for the program, and as a consequence may have missed out on needed medical care."
• How tens of thousands of patients who weren’t actually dying wound up on hospice care (Peter Whoriskey, Washington Post, 9-15-16)
...over the past decade, as a 2014 Washington Post investigation found, the number of patients who outlived hospice care in the United States has risen dramatically, in part because hospice companies earn more by recruiting patients who aren’t actually dying. Now government inspectors have turned up information about how that happens.... In many cases, the patient was not informed that electing hospice meant that they intended to forgo a cure for their terminal illness — a critical distinction between hospice care and other health services. Hospices instead provide "palliative care"- that is, care focused on the prevention and alleviation of suffering. "When people elect hospice care they are forgoing curative care - and it's important for them to know that," Nancy Harrison, one of the investigators, said in a interview.'
• 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."
• Disparities found in hospice care among older dialysis patients (Liz Seegert, Health Journalism, AHCJ, 11-20-15) There are “substantial” racial disparities when it comes to hospice use among some older adults, according to a new study. Researchers found that end-stage renal disease (ESRD) patients who were African American or Native American were 44 percent less likely to take use hospice care than white patients. Asian-Americans were 43 percent less likely to do so. "In my line of work it’s become a major issue, this issue of how you deal with people who are really sick and dying and on dialysis,” Robert Foley, M.D., an epidemiologist at the University of Minnesota. “A common misconception is that a dialysis patient must stop dialysis in order to be accepted into a hospice program,” according to the Coalition for Supportive Care of Kidney Patients. Seegert discusses other problems, also.
• 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.)
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
Helpful sites for health care professionals
(Recommendations from the book Extreme Measures: Finding a Better Path to the End of Life by Jessica Nutter Zitter, MD
---Advance Care Planning Decisions (ACP Decisions has a library of videos you can watch online, decision aids to help patients and health care providers "discuss difficult topics in a neutral fashion."
---VitalTalk makes communication skills for serious illness learnable. "Our evidence-based trainings empower clinicians and institutions."
---Lown Institute (promotes patient-centered approaches to health care)
---Ariadne Labs (provide guidance for clinicians on how to initiate conversations about serious illness)
---Center to Advance Palliative Care (capc.org) (resources for hospitals and health care providers interested in developing palliative care programs)
• American Academy of Hospice and Palliative Medicine (Physicians caring for patients with serious illness). One particularly apt post: Poof! You’re a Caregiver
• Bioethics Discussion blog (Information and news from the National Hospice and Palliative Care Organization).
• Code Blog (tales of a nurse)
• Crossroads, a blog for family caregivers and healthcare professionals. (Sample: This is What It Takes to Be a Hospice Social Worker (3-15-17)
• Crossroads Hospice Charitable Foundation Sample: Waiter Tipped $500 after Random Act of Kindness toward Grieving Wife and Mother
• Death Care
• Death Nurse
• Dying Matters (to help patients plan, in their own way, for the end of life)
• End of Life (stories from an end-of-life, critical care doctor)
• GeriPal (a geriatrics and palliative care blog, focusing on older individuals)
• Get Palliative Care
• Goodbyes (Debra Bradley Ruder)
• The Good Death (a discussion of all the ways we communicate about death)
• Hospice Physician's Blog
• Hospice and Nursing Homes Blog (Frances Shani Parker, eldercare consultant and author of Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes
• Hospice Doctor
• Hospice Physician's Blog (life of a hospice and palliative care doctor)
• How We Die
• Last Comforts (Ellen Ryan)
• Life as a Hospice Patient (the late Judi Chamberlin, about her fight for the right to die at home)
• Medical Futility Blog (Professor Thaddeus Mason Pope tracks judicial, legislative, policy, and academic developments concerning medical futility and the limits on individual autonomy at the end of life -- a blog about medical futility, bioethics, end-of-life medicine, right to die, medical law, health law, patient rights, critical care and ICU ethics)
• Midwife for the End of Life
• The New Old Age (New York Times)
• NHPCO Updater (National Hospice and Palliative Care Organization)
• Oncology Professional Rebels Network (ONCO-PRN)
• Pain Management Resource Blog (Advanced Pain Management)
• Palliative Care Success (commentary on how palliative care programs and palliative medicine physicians can play a role in the improvement of advanced illness management in the US)
• Palliative Doctors (addresses what palliative care is, who comprises a team, how to get started, questions to ask your doctor, and how to develop a care plan that works for you, with patient stories)
• Palliative in Practice (Center to Advance Palliative Care site with news, information, stories, and insights from medical professionals)
• Pallimed (a all-volunteer hospice and palliative medicine blog, written primarily by doctors). See, for example, this excellent entry about why doctors might hesitate to prognosticate: Cases: Talking About Prognosis
• Pallimed Arts & Humanities
• Practical Bioethics (Center for Practical Bioethics)
• 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.
• The Best Palliative Care Blogs of the Year (Rita Mauceri, HealthLine, 4-28-17)
• Hospice and Palliative Care Community Blog Directory (National Hospice and Palliative Care Organization)
(in alphabetical order, by title)
• 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. "...by way of the story of his own father’s dying, Gawande examines the cracks in the system of health care to the aged (i.e. 97 percent of medical students take no course in geriatrics) and to the seriously ill who might have different needs and expectations than the ones family members predict. (One striking example: the terminally ill former professor who told his daughter that “quality of life” for him meant the ongoing ability to enjoy chocolate ice cream and watch football on TV. If medical treatments might remove those pleasures, well, then, he wasn’t sure he would submit to such treatments.) Doctors don’t listen, Gawande suggests—or, more accurately, they don’t know what to listen for. (Gawande includes examples of his own failings in this area.) Besides, they’ve been trained to want to find cures, attack problems—to win. But victory doesn’t look the same to everyone, he asserts. Yes, “death is the enemy,” he writes. “But the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee... someone who knows how to fight for territory that can be won and how to surrender it when it can’t.”
• On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy and Their Own Families by Elisabeth Kübler-Ross. (This is the one that started it all)
• The Beauty of a Slow Death: Understanding Acceptance and Learning to Live Differently Can Lead to Peace by Michele DeMeo
• Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes by Frances Shani Parker
****Being Mortal: Medicine and What Matters in the End by Atul Gawande
• 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)
• Dying Well: Peace and Possibilities at the End of Life by Ira Byock, author of The Four Things That Matter Most : A Book About Living
• Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying by Maggie Callanan and Patricia Kelley
• The Hospice Companion: Best Practices for Interdisciplinary Assessment and Care of Common Problems During the Last Phase of Life, edited Perry Fine and Matthew Kestenbaum
• Hospice Voices: Lessons for Living at the End of Life by Eric Lindner
• In the Face of Death: Professionals Who Care for the Dying and the Bereaved by Danai Papadatou
• LGBTQ-Inclusive Hospice and Palliative Care: A Practical Guide to Transforming Professional Practice by Kimberly D. Acquaviva. See story in Chronicle of Higher Education.
• Living at the End of Life: A Hospice Nurse Addresses the Most Common Questions by Karen Whitley Bell
• Medscape Ethics Report 2014, Part 1: Life, Death, and Pain (Leslie Kane, Medscape Ethics Center, 12-16-14). More than 21000 physicians told us about the ethical dilemmas that keep them awake at night, including several life-and-death issuesPart 2: Money, Romance, and Patients Ethical dilemmas involving money, patients, and romance arise regularly throughout a physician's career. The way physicians choose to deal with them reflects each doctor's values and personality, which may conflict with standards of the profession.
• The Needs of the Dying: A Guide for Bringing Hope, Comfort, and Love to Life's Final Chapter by David Kessler
• On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy and Their Own Families by Elisabeth Kübler-Ross
• One Foot In Heaven, Journey of a Hospice Nurse by Heidi Telpner
• The Other Side of Sadness: What the New Science of Bereavement Tells Us About Life After Loss by George A. Bonanno
• Pain Management Pocketcard Set (Ruchir Gupta)
• Preparing Your Children For Goodbye: A Guidebook For Dying Parents by Lori A. Hedderman
• Saying Kaddish: How to Comfort the Dying, Bury the Dead, and Mourn as a Jew by Anita Diamont
• Symptom Management Algorithms: A Handbook for Palliative Care by Linda Wrede-Seaman
• The Thing About Life Is That One Day You’ll Be Dead by David Shields (People keep walking off with my copy!)
• When Breath Becomes Air by Paul Kalanithi. A young neurosurgeon faced with a terminal cancer diagnosis tries to answer the question What makes a life worth living?
• 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)
• Cost of Dying, a MercuryNews.com series on end-of-life care. Reporter Lisa Krieger's story of her father's death brought an outpouring of response from readers. The occasional series that followed was written by her, with Dai Sugano helping on videos.
~Discovering a better way for final days ( updated 1-4-13)
~The cost of dying: It's hard to reject care even as costs soar (Lisa M. Kreiger, My Dad's Death, Mercury-News, 12-24-12)
~The cost of dying: Lessons learned (2-19-12)
~Cost of Dying: planning for a good death, from advance directive to talking with your family (6-24-12)
~Relief at the door: Palliative care improves lives and eases the cost of dying (10-9-12)
~Simple act of feeding poses painful choices (11-02-12)
~The challenges of at-home caregiving (Dai Sugano, Lisa M. Krieger, 12-02-12)
~Hospitals' end-of-life care differs (Some Bay Area hospitals combat death aggressively with expensive treatment, 12-14-12)
~Tips on how to fill out the AHCD and POLST, the end-of-life directive forms (4-17-12)
~Videos, The cost of dying (Dai Sugano and Lisa Krieger)
• 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."
• American Hospice Foundation 1-800-347-1413 (toll-free)
• American Academy of Hospice and Palliative Medicine (AAHPM)
• 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)
• Centers for Medicare & Medicaid Services 1-800-633-4227 (toll-free)
• Center to Advance Palliative Care (CAPC, at Mount Sinai Hospital, 1-212-201-2670). Founded by Diane Meier, helped to establish hospital-based palliative care programs. See America’s Care of Serious Illness CAPC's 2015 report, with state-by-state rankings on access to hospital-based palliative care. How does your state stack up? Have things improved?
• Coalition to Transform Advanced Care (C-TAC). Advocates for comprehensive, high-quality, person- and family-centered care that is consistent with their goals and values.
• Department of Veterans Affairs (VA) 1-877-222-8387 (toll-free)
• The Initiative for Pediatric Palliative Care (IPPC)
• International Association for Hospice & Palliative Care (IAHPC (promoting and developing palliative care throughout the world). Read online a generous selection ofessays and articles on ethics in palliative care.
• International End of Life Doula Association (INELDA)
• National Academy of Elder Law Attorneys (NAELA)
• National Hospice and Palliative Care Organization (NHPCO) 1-800-658-8898 (toll-free)
• National Palliative Care Registry
• National Palliative Care Research Center
• 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) 1-202-384-1420
• 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)
• Knocking on Heaven's Door: The Path to a Better Way of Death by Katy Butler. "... a thoroughly researched and compelling mix of personal narrative and hard-nosed reporting that captures just how flawed care at the end of life has become." ~Abraham Verghese, NY Times Book Review
• 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 )
• Caring to Learn and Learning to Care: Inmate Hospice Volunteers and the Delivery of Prison End-of-Life Care (Kristin G. Cloyes et al., Journal of Correctional Health Care, 1-18-17) One strategy for providing prison-based palliative and end-of-life care is to incorporate prisoner volunteers into end-of-life services within a peer-care program. This volunteer-centric model is associated with emergent values of mentorship and stewardship, with response-ability for the end-of-life care of prisoners. See also The Prison Where Inmates Help Each Other Die With Dignity (Maura Ewing, Jeremy Leung, Narratively, 3-23-17) More Americans are dying behind bars than ever before. At one correctional facility (Osborn Correctional Institution, a medium-security prison in northern Connecticut), volunteer death-doulas offer care and comfort to their fellow prisoners.
• Introducing the palliative care ICU (Jordan Crumet, Kevin MD, 11-19-13) Less an actual place than a state of mind, the PCU is a philosophy of doctoring that allows physicians to treat both aggressively and palliatively at the same time. In other words, short term, intense, pain neutral interventions are carried out acutely with an eye on pivoting to hospice versus aggressive care depending on short term response....Many of my patients are elderly, demented, and plagued by metastatic disease. Often when one of them becomes ill, it is unclear if they are merely treading water, or about to drown. The problem with our modern definitions is that they leave little room to pivot.Pivoting, it turns out, is critical to delivering humane, dignified, high quality care. And our patients don’t want to be pigeonholed. They want aggressive doctoring when it will be helpful, and hospice when chances are slim.
• 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)
• A Chance to Pick Hospice, and Still Hope to Live (Reed Abelson, NY Times, 2-10-07) Many patients spend their last days in a hospital receiving expensive care they may not even want, or frequently return to the hospital because managing their disease is too much for a family to handle. Medicare’s fixed-payment system discourages some hospice programs from accepting patients who need expensive treatment. “The perverse incentive is to take the cheapest patient,” said Carolyn Cassin, the chief executive of Continuum Hospice Care, who said such a patient would be someone who had already given up hope and required very little medical care. Continuum Hospice Care is among the small number of hospice programs that makes a point of taking even those patients who want sophisticated treatment.' Many hospice programs, though, are too small to spread their costs, which would allow them to take patients needing expensive treatments. Some argue that Medicare should simply drop the requirement that patients forgo other coverage if they want hospice care. (Written in 2007) Sidebar: Hospice Basics.
• David Bowie’s Lessons on Dying (Gail Rubin, A Good Goodbye, 1-19-16). She refers to A thank you letter to David Bowie from a palliative care doctor (Dr Mark Taubert, BMJ Blogs, 1-15-16)
• '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, 1998) 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.
• Key topics on end-of-life care for African Americans (PDF, Duke University) . Derived from The Last Miles of the Way Home 2004 National Conference to Improve End of Life Care for African Americans
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
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.
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 dogs help ease final days for hospice patients (Jennifer Moody, Alaska Dispatch News, 1-24-14)
---A Day in the Life of JJ, the Therapy Dog (Samaritan Health Services).
---JJ, Hospice Therapy Dog (his Facebook page)
---On Dogs and Dying: Inspirational Stories From Hospice Hounds by Michelle Rivera
---Therapy dog provides comfort to hospice patients (David Caddell, AnnArbor.com 4-16-12)
---Project Canine (therapy dog training)
• To Die At Home, It Helps To Have Someone Who Can Take Time Off Work (Lynne Shallcross, Shots, NPR, 10-9-15) A wide base of support is needed in order for a patient's wish to die at home to be made real. Researchers found that four factors could explain 91 percent of deaths that occurred at home: patient's preference, relative's preference, home palliative care or district/community nursing. Only three states have paid family leave policies: California, New Jersey and Rhode Island.
• Turning a Home Into a Hospital (Linda G. Beeler, Caring and Coping, NY Times, 11-26-12) "...I am glad that I was able to be with my mother through the end of her journey. It was tough to watch this once strong, vital woman become thin and fragile. And as my last living parent, she was the buffer between myself and the reality of my mortality. Still, the experience was emotionally rich and liberating. And, in the end, we were both at peace. "
• 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)