Death, dying, and end-of-life care and decision-making Practical insights into the end of life
• Conversations about dying
• Questions and answers about death and dying
• End-of-life decision-making
• Death cafes and group discussions about end-of-life concerns
• Improving end-of-life care
• Practical aspects of end-of-life care and decision making
• Saying goodbye
• The best books about death and dying
• When is someone legally dead?
• Crossing over and near-death experiences
• End-of-life planning and options for pets
• Statistics about death, mortality, long-term care, hospice care, and palliative care
end-of-life concerns, and final wishes)
• At Death’s Door, Shedding Light On How To Live (Judith Graham, KHN, 11-8-18) When doctors told Ronni Bennett that her pancreatic cancer had metastasized to her lungs and peritoneum and that she probably had six to eight months to live, she began living differently, and writing about the process of dying in her blog As Time Goes By. “I’m new to this — this dying thing — and there’s no instruction book. I’m kind of fascinated by what you do with yourself during this period, and questions help me figure out what I think,” she told me. She and her former husband broadcast their video conversations about it over YouTube (The Alex and Ronni Show: On the End of Life. “There’s very little about dying from the point of view of someone who’s living that experience,” she said. “This is one of the very big deals of aging and, absolutely, I’ll keep writing about this as long as I want to or can.”
• We should all have the end-of-life conversation (Ellen Goodman on The Conversation Project). "Too many people are dying in the way they would not choose. Surveys tell us that 70 percent of Americans, for example, want to die at home but 70 percent end up dying in hospitals and institutions....Too many survivors, for that matter, are left not just mourning but feeling guilty, depressed, uncertain of whether they have done the right thing.... And we cannot wait for "the right time" because it will always seem too soon ... until it is too late." The Conversation Project, which she helped cofound, quotes Goodman in a WBUR interview about collecting stories about "good deaths" and "bad deaths": A good death? " I would say it’s, among other things, a pain-free death, and one in which you are not subjected to the kinds of aggressive care that you would choose not to be. We know that 70 percent of people want to die at home. And we know that 70 percent of people are dying in institutions, hospitals and, God help us, ICUs. So I would say a good death is dying in the way that you would choose, whatever it is." (Oregon Live, 7-15-13)
• A nurse with fatal breast cancer says end-of-life discussions saved her life (Amy Berman, Washington Post, 9-28-15) Metastatic cancer will one day kill her, but the advanced-care planning conversations she has had with her health-care team have been lifesaving since her diagnosis. "I use the word 'lifesaving' advisedly because that is what these conversations are truly about. When done well, they can shape care in ways that give people with serious illness a chance at getting the best life possible....Faced with an incurable disease and a prognosis where only 11 to 20 percent survive to five years and there is no statistic for 10-year survival because it so rarely happens, I came to understand that my priority was to seek a 'Niagara Falls trajectory' — to feel as well as possible for as long as possible, until I quickly go over the precipice. Quality of life is more important to me than quantity of days, if they are miserable days." Encouraged by one doctor to undergo aggressive treatment, she knew she didn't want the side effects. "I am pleased to report that the subsequent nearly five years have rewarded my decision to seek palliative rather than more aggressive treatment. The cancer has spread a bit farther from my spine and into a couple of my ribs. But because my treatment focuses on helping me live well and feel well, I haven’t been in the hospital."...I estimate I’ve saved about a million dollars by avoiding care I do not want, which includes the cost of chemotherapy, radiation, surgery to remove the breast, at least one hospitalization for that care, and the follow-up care to the surgery. Chemotherapy alone would have cost upward of $500,000....The benefits of a rule from Medicare covering such conversations are clear: better health, better care and, in many cases, lower costs. Most important, these conversations will be lifesaving, enabling those of us with serious illness to live the way we want to, fully and deeply for as long as possible."'
• Terminal breast cancer leads woman to pick palliative care, not aggressive therapy (Amy Berman, Health Affairs, Wash Post, 4-30-12) How I decided to live a good life with the life I have left. "[M]y research revealed that despite all the funding going toward curing breast cancer, what seemed an insignificant amount goes toward finding a cure for inflammatory breast cancer....[the specialist she consulted "never asked me what I wanted. He didn’t mention my needs or treatment goals. He didn’t know — or seem to care — that my hope was to extend my quality time on this planet rather than merely linger. He didn’t care about the toll of the treatments on my body and my remaining days."" Were I to choose his one-size-fits-all approach, I’d strip myself of the very type of life I’m pleased to have now, probably without gaining any benefit....Why do these and so many other doctors miss that patients have their own needs and desires?" As a nurse, she knew what "treat aggressively" means. "Recent evidence suggests that people with certain cancers might actually live longer — and better — using a palliative approach, such as the one I’m taking....Recent studies suggest that fully informed patients nearing the end of their lives are less likely to choose aggressive care when they understand what they can realistically expect. They are also less anxious, and they rarely end up in intensive care units or on ventilators."
• The Conversation Project (slow-loading when it draws a lot of readers, but helpful when you get there!) as my friend Artie puts it: "Their goal is to demedicalize death, similarly to how birth has been partially demedicalized by encouraging home birth and letting dads in the delivery room with video cameras" (not sure if the last one is an advance, but you get the idea). Different from "Death with Dignity" and doctor-assisted suicide because The Conversation Project does not agree on this issue and also because fewer then 1% will choose that route, based on experience in states like Oregon where it has been legal for a while. The project's starter kits are to help families or friends discuss what they want in a personal way. They are not supposed to be like the forms one fills out for doctors and hospitals (which are mainly intended to protect them from liability). There has been a lot of progress in the last five years. See Atul Gawande's book Being Mortal, a report by the Institute of Medicine, and a decision by Medicare to pay for end-of-life counseling visits (a big step from the panic over death panels when Obamacare was being voted on).
• How to Talk to Your Doctor (or any member of your health care team) (PDF, The Conversation Project)
• Where to Start with End-of-Life Discussions (45 minutes, groups discussion, on radio 1-A). Guests: Diane Rehm, Rosemary Gibson (Author of The Treatment Trap: How the Overuse of Medical Care is Wrecking Your Health and What You Can Do to Prevent It ), Budd Hammes, and Jessica Zitter (author of Extreme Measures: Finding a Better Path to the End of Life -- see their credits on site). Today’s treatment options offer many options for prolonging life. But when someone decides that it’s time to let go, how can they and their loved ones best prepare?
• The Starter Kit (PDF, The Conversation Project)
• End of Life Stories (a safe place to share stories of love and loss, devastating grief, exhausting care-giving, memorials, advanced directives, mourning, hope, and despair. "What you wish you had known or done differently, what you wish those around you had known or done differently, and what went right. We will never tell you to move on or find closure.")
• How do you want to die? A mission to make death part of popular conversation (Lynn Sherr interviewing various experts, PBS NewsHour, 3-28-15) A growing national movement to normalize end-of-life discussions among family and friends has gained traction in recent months. As Medicare considers whether to cover such conversations with physicians, The Conversation Project, a Boston-based non-profit, is highlighting the importance of talking openly about dying. .According to a survey the group conducted, more than 90 percent of people agree, saying they should have The Conversation. But only 30 percent have done so. The Conversation Project says, nothing will change until people start talking about it.
• Atheists: your five-year-old daughter is on her deathbed and asks, “Will I go to Heaven when I die?” How do you reply? (Quora.com) If Cecelia Smith's "Real Clown" response is still up, read that response.
• When do you know you're old enough to die? Barbara Ehrenreich has some answers. (Lucy Rock, The Guardian, 4-7-18) In her new book Natural Causes: An Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves to Live Longer, 'Ehrenreich – who holds a PhD in cellular immunology – casts a skeptical, sometimes witty, and scientifically rigorous eye over the beliefs we hold that we think will give us longevity. She targets the medical examinations, screenings and tests we’re subjected to in older age as well as the multibillion-dollar “wellness” industry, the cult of mindfulness and food fads. These all give us the illusion that we are in control of our bodies. But...Ehrenreich argues this is not so. For example, she details how our immune systems can turn on us, promoting rather than preventing the spread of cancer cells. When Ehrenreich talks of being old enough to die, she does not mean that each of us has an expiration date. It’s more that there’s an age at which death no longer requires much explanation.'
• Family Conversations About End-Of-Life Care Listen to Diane Rehm and guests on her radio show (recorded in 2012) explore how to begin discussions about end-of life care--explaining some of the things that can go wrong if such discussions are not held."Armed with basic facts and good listening skills, it's possible to create a strategy that gives a loved one comfort and provides caregivers with peace of mind."
• First, Sex Ed. Then Death Ed. (Jessica Nutik Zitter, NY Times, 2-18-17) "Many of us would choose to die in a planned, comfortable way, surrounded by those we love. But you can’t plan for a good death if you don’t know you’re dying....The fact is that when patients are prepared, they die better. When they have done the work of considering their own goals and values, and have documented those preferences, they make different choices. What people want when it comes to end-of-life care is almost never as much as what we give them." And 80 percent of Americans would prefer to die at home, but only 20 percent do so.
• Five Wishes. Changing the way we talk about and plan for care at the end of life. (Aging with Dignity) A living will that talks about your personal, emotional, and spiritual needs as well as your medical wishes--an easy-to-complete form that lets you say exactly what you want. The wishes: The person I want to make care decisions for me when I can't. The kind of medical treatment I want or don't want. How comfortable I want to be. How I want people to treat me. What I want my loved ones to know. See Sample document..
• Prepare (English or Spanish and oral is available). Step-by-step instructions and forms to let medical and family caregivers know your end-of-life wishes. (Beautifully and carefully designed website.)
• A Necessary Look at the End of Life in an ICU (Ellen Rand, Last Comforts blog). Ellen (the author of Last Comforts: Notes from the Forefront of Late Life Care) recommends three things:
(1) "a remarkable 24-minute short film, “Extremis” (available now on Netflix)," a relatively short but powerful film which "shows how the technology that can prolong our lives when we are desperately ill raises important questions about the difficulties in making decisions at the end of life."
(2) "The Waiting Room," a 2012 documentary about "the complexities of health care in the United States by focusing on the ER waiting room of a public hospital in Oakland, Calif., where a diverse -- and largely uninsured -- collection of patients seek care."
(3) The book Extreme Measures: Finding a Better Path to the End of Life by Jessica Nutik Zitter MD.
To that I would add Knocking on Heaven's Door: The Path to a Better Way of Death by Katy Butler. Doctors tend to overestimate by 5 to 6 times the length of time failing patients have left. As a result, important conversations do not take place and family members are unprepared and insist on "doing everything" to save the patient. It takes weeks, maybe months, to really absorb the reality of a terminal diagnosis -- people go in and out of denial, taking time to process the news. "Although most of us claim no desire to die with a tube down our throat and on a ventilator, the fact is, as Katy Butler reminds us in “Knocking on Heaven’s Door,” a fifth of American deaths now take place in intensive care, where 10 days of futile flailing can cost as much as $323,000..." 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."
• When it Comes to End of Life Care, Don’t Fall for Magical Thinking! (Ellen Rand, Sixty and Me, 5-22-17) "In 1998, The Precursors Study, as the research is called, started asking the physicians in their 60s, 70s and 80s about how they wanted to die, with 10 possible treatments listed: CPR, ventilation, dialysis, chemotherapy, surgery, invasive testing, feeding tube, blood transfusions, antibiotics, IV hydration and pain medication.
With the exception of pain medication, the physicians said they would choose, in essence, none of the above. A more recent study from the Stanford University School of Medicine echoed the results of the Precursors Study: In 2013, it found that 88.3 percent of the nearly 2,000 physicians surveyed said they would choose “no-code,” or do-not-resuscitate orders for themselves. So, when you’re tempted to succumb to magical thinking, remember these physicians’ choices!"
• The Charlie Gard story reveals what we won’t accept about medicine (Alheli Picazo, Maclean's, 7-18-17) Amid the crass politicization and the cruel false hope around the Charlie Gard case is this truth: We, as a society, refuse to grasp death. "... the push to assign blame and assume control over what’s ultimately a genetic tragedy speaks to a broad misunderstanding of disease and how it’s treated—and our stubborn reluctance to concede to the cruelty of fate....The fate of the child is not open to ruling; Charlie’s genetic disorder remains his death sentence....By and large, society’s grasp of death and understanding of illness is selective and flawed. Disease is presented as something to be valiantly fought against as opposed to professionally treated; when people die, they’re said to have 'lost the battle,' suggesting failure on the part of the individual for circumstances well beyond their ability to influence. Medicine and doctors treat disease as best they can, but not every illness can be remedied or managed—that’s not failure, that’s nature." A powerful piece.
• Improving end-of-life care. Links to many helpful articles.
• Zen and the Art of Dying Well (Courtney E. Martin, Opinion, New York Times, 8-14-15) "For someone who is dying, the past can be too complicated to contemplate and the future is jarringly unknown. Focusing on the present, Zen Hospice Project believes, is where the potential for living most meaningfully — even while dying — exists....Historically, neither private health insurance nor Medicare covers the cost of residential hospice care. One result is that when people don’t have a place to go or a care plan that’s realistic for their situation, they languish in their hospital bed, taking up a resource that the hospital cannot be reimbursed for." How the Zen Hospice Project does what it does.
• Why is it so hard to discuss end-of-life care? (Liz Seegert, Association of Health Care Journalists, 4-27-15). Addressed to journalists, who are often over-optimistic, selling hope. Treatment is not always a good idea, death must not always be fought, and it's important to understand "the gray zone"--"the area between active living, when curative medicine is effective, and active dying, when funding for hospice is available."
• Let's Have Dinner and Talk About Death (an interactive guide to having a conversation about dying).
• The Other Talk: A Guide to Talking with Your Adult Children about the Rest of Your Life (Tim Prosch, AARP) Helps you address these questions and others:
Who will manage your finances and how will you budget for unknown needs?
Where can your children find important documents they will need to help?
Where will you live if you need assistance?
What type of medical treatments do you want--and not want--and who will advocate for your needs?
• Wealthy parents fret over 'inheritance talk' with kids (Shelly Schwartz, CNBC, 7-22-15) A CNBC survey of wealthy parents found that many fret over whether the fortune they have earmarked for their heirs might stifle kids' drive, how much to leave, while others question how much they should reasonably bequeath and when to tell their kids about the financial windfall coming their way.
• Ethnic Differences Thwart End-of-Life Conversations (April Dembosky, KQED, State of Health, 4-22-15) Virtually all doctors have difficulty talking to their patients about death, and those conversations are even harder when the patient’s ethnicity is different from the doctor’s, according to a study (No Easy Talk: A Mixed Methods Study of Doctor Reported Barriers to Conducting Effective End-of-Life Conversations with Diverse Patients by Vyjeyanthi S. Periyakoil , Eric Neri, Helena Kraemer (PLOS One, 4-22-15) Number 1 barrier: language and medical interpretation issues. No. 2: religious and spiritual beliefs ("It's in the hands of God, so don't turn off the ventilator.") Sometimes mentioning the word "death" is taboo because that might be tempting fate. Periyakoil recommends the Stanford Letter Project solution -- urging patients to write letters to their doctor, in their own language, in their own words, about what matters most to them about the end of life.
"The letter addresses some important practical issues that are not currently addressed in the advance directive document. It clarifies the patient’s stance on palliative sedation should pain and symptoms become refractory. Most importantly, it offers guidance to the doctor about what to do when the health-care proxy overrides the patient’s stated wishes. We created an app that uses the letter template to generate pre-filled advance directives. By answering a few simple questions, patients are able to complete both the official advance directive and the letter (as a supplement to the advance directive) and to send the documents to their doctors to be saved in their medical records." ~ from The most important letter you may write. See full section of helpful articles about and guides to writing such a letter.
• Deficiencies In End-Of-Life Care Extend Across Ethnicities (Barbara Feder Ostrov, Kaiser Health News, 11-23-15)
• The Stanford Letter Project. New research at Stanford shows that most doctors are reluctant to talk to their patients about what matters most to them at the end of life. Download a letter template from the Stanford Letter Project to help you write a simple letter to your doctor about what you want most at the end of your life. And give it to your doctor.
• Death cafes and conversations about end-of-life concerns (links to several articles). At a Death Cafe people drink tea, eat cake and discuss death--a topic that too often remains in the closet because so many feel we should not talk about it...." talking about everything from advanced care directives to grieving rituals — it ends up being about not so much how we die but about how we live."
• Let's Have Dinner and Talk about Death. As described in the Atlantic article Discussing Death Over Dinner (Richard Harris, 4-16-16). A nonprofit is experimenting with shared meals where participants are asked to grapple with their own mortality. Founded by a group of medical professionals and wellness experts "concerned about the disconnect in the American health care system between how Americans say they would prefer to die (at home) and how they actually are more likely to die (in hospitals or care facilities)." (quoting Sixty and Me)
• Teenagers Face Early Death, on Their Terms (Jan Hoffman, Well, NY Times, 3-28-15)
• Voicing My Choices A blueprint for end-of-life choices, for adolescents and young adults living with a serious illness--focusing on topics identified as most important by young people. Nothing in Voicing My Choices overrides the legal authority of a parent or guardian in relation to a minor child. The document simply helps the parents and guardians to make good decisions based on the wishes of the seriously ill young person. See Frequently asked questions
• My Wishes (a booklet written in everyday language that helps children express how they want to be cared for in case they become seriously ill)
• Larry King Is Preparing for the Final Cancellation (Mark Leibovich, NY Times, 8-26-15) Five years after CNN pulled the plug on his show, the TV host is thinking about whom he’ll book for his funeral.
• Am I dying?-- The honest answer." (Matthew O'Reilly, TED@NYC, July 2014). I highly recommend this brief transcript of a TED talk about how to answer that question (Am I dying?) when you're alone with a person who is clearly dying.
• 5 things you should know about end-of-life conversations (Megan Thompson, PBS NewsHour, 3-28-15)
• Atul Gawande, “Hope is Not a Plan” When Doctors, Patients Talk Death
• Being Mortal: Medicine and What Matters in the End (Atul Gawande). (from a review by Sara Nelson: '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.” In his compassionate, learned way, Gawande shows all of us—doctors included—how mortality must be faced, with both heart and mind.' From the book itself: "The terror of sickness and old age is not merely the terror of the losses one is forced to endure but also the terror of the isolation. As people become aware of the finitude of their life, they do not ask for much. They do not seek more riches. They do not seek more power. They ask only to be permitted, insofar as possible, to keep shaping the story of their life in the world-- to make choices, and sustain connections to others according to their own priorities."
• Choosing Not to Choose (Robin Marantz Henig, New Old Age, NY Times, 4-30-09) "What our mother confronts now is an impossible choice: an immediate, relatively low risk of injury or death during five hours of grueling surgery, versus the long-term risk — those 50-50 odds — of gradual disability and death over the next few years. On the one hand, she wants to avoid the scary operation and the harrowing recovery. On the other hand, she wants to do whatever it takes to live as long as she can. She knows she can’t have both."
• JAMA Forum: Conversations About How We Die (Diana Mason, News@JAMA, 3-18-15)
• Hospice care and palliative care (links to resources)
• Helping a dying friend.
• Can Good Care Produce Bad Health? (Amy Berman, RN, The Health Care Blog, 8-15-12) "As a nurse and a senior program officer at a health care foundation, I understood my disease and my health care options well enough to make an informed decision about my treatment. What about the millions of older Americans facing a terminal illness or chronic disease? How can they possibly stand up to the juggernaut of our health system and say, “No. I want care that focuses on my goals, care that is centered on me.”
• Saying Goodbye.
• Statistics about death, mortality, long-term care, hospice care, and palliative care
• What to say (or not say) to those who are dying or grieving (Helping a Dying Friend)
• More stories about death and dying
• Housing options for seniors and disabled (because sometimes you need information about various options)
• Site Map (to find more links, information, and resources)
• Answers to Reader Questions About Death and Dying (Ronni Bennett, Time Goes By. 10-26-18)
• Questions of Death and Dying (WebMD)
• Frequently Asked Questions on Death and Dying (Grief.com). Scroll down to avoid annoying pop-ups, then click on the questions you have and some pretty good answers come up.
• How to answer the question: “Am I dying?” Scroll down for video of Matthew O’Reilly's TED Talk. O'Reilly is an emergency medical technician in New York. He knows what it’s like to be asked by a patient, “Am I dying?” — and what to do when the answer is, “Yes.” What happens when first responders answer with the truth. Patterns of response: The hope for forgiveness, the need to be remembered, the need to know that their life had meaning.
• Questions and Answers on Death and Dying by Elisabeth Kübler-Ross. A companion volume to On Death and Dying See Goodreads comments.
• 10 questions to ask your loved one about death and dying (Funeral Zone)
• Questions and Answers About Children's Grief (PDF, Scholastic Teacher Sheet)
• The Death Penalty: Questions and Answers (ACLU)
• Death: how to talk about it with children (Raising Children, Australian parenting site)
• Five Wishes lets your family and doctors know:
---Who you want to make health care decisions for you when you can't make them.
---The kind of medical treatment you want or don't want.
---How comfortable you want to be.
---How you want people to treat you.
---What you want your loved ones to know.
• What an End-of-Life Adviser Could Have Told Me (Jane Gross, The New Old Age, NY Times, 12-15-08). "If only I’d had the 800 number for Compassion & Choices in the last difficult months of my mother’s life."'
• Compassion and Choices (supports, educates and advocates for choice and care at the end of life -- improving pain and palliative care, enforcing living wills and advance directives, and legalizing aid in dying). See Answers to common end-of-life questions (Compassion & Choices, scroll down)
• Slow Medicine (Facebook site managed by Katy Butler, author of The Art of Dying Well: A Practical Guide to a Good End of Life
• Choosing Wisely, an initiative of the ABIM Foundation to help providers and patients engage in conversations to reduce overuse of tests and procedures, and support patients in their efforts to make smart and effective care choices. See Choosing Wisely lists (resources for consumers and providers to engage in conversations about the overuse of medical tests and procedures that provide little benefit and in some cases harm):
• The Conversation Project (important discussions families need to have later in life). The Conversation Project asks these questions, in a kit you can order from their website:
---When you think about the last phase of your life, what’s most important to you? How would you like this phase to be?
---Do you have any particular concerns about your health? About the last phase of your life?
---What affairs do you need to get in order, or talk to your loved ones about? (Personal finances, property, relationships)
---Who do you want (or not want) to be involved in your care? Who would you like to make decisions on your behalf if you’re not able to? (This person is your health care proxy.)
---Would you prefer to be actively involved in decisions about your care? Or would you rather have your doctors do what they think is best?
---Are there any disagreements or family tensions that you’re concerned about?
--- Are there important milestones you’d like to be there for, if possible? (The birth of your grandchild, your 80th birthday.)
---Where do you want (or not want) to receive care? (Home, nursing facility, hospital)
---Are there kinds of treatment you would want (or not want)? (Resuscitation if your heart stops, breathing machine, feeding tube)
---When would it be okay to shift from a focus on curative care to a focus on comfort care alone?
• The Conversation: A Family's Private Decision (ABC News)
• The enemy is not death. The enemy is needless suffering. (oncologist James C. Salwitz, Kevin MD, 5-24-16) The final part of life is about being alive, not about death. Only by seizing those precious moments, deciding our own fate, can we hope for quality, comfort, and dignity.'
• In the fog of loss: A reflection on love, life and death (Joyce Maynard, Stanford Medicine, Summer 2017) An excerpt from her book The Best of Us: A Memoir. Married a second time in her late fifties, Maynard and her husband get the diagnosis that he has pancreatic cancer. This pieces describes what their decision to fight the cancer aggressively entails, and what she would do differently, in retrospect.
• The Last Chapter: End of Life Decisions (West Virginia Public Broadcasting) In this excellent one-hour documentary, individuals battling end-stage disease reflect on how they want to live their final weeks--examining end-of-life care options and the need for advance directives including a living will, a medical power of attorney, and a POST form (Physician Orders for Scope of Treatment, known as a MOLST or POLST in other states). May well help motivate people to stop putting off spelling out their final wishes--empowering them to have the last word on how they live at the end of their lives.
• When Prolonging Death Seems Worse Than Death (Fresh Air from WHYY, 10-11-12). Terry Gross interview Judith Schwarz, who helps dying patients and their families decide whether and how to hasten the end. Compassion & Choices is an organization that helps terminally ill patients and their families make informed and thoughtful end-of-life decisions. Schwartz discusses the practicalities of various choices.
• In Plain Language: A Glossary Of Terms For End-Of-Life Planning (New Hampshire Public Radio, 8-28-13)
• Can advance care planning help you avoid the treatment trap? (Rosemary Gibson, author of The Treatment Trap and Wall of Silence) PDF of her presentation on the subject. Death panel” rhetoric has it backward: The latest research and clinical approaches in advance planning focus on how to help patients make more informed medical decisions. This panel explores the changes and challenges: How are patient values and beliefs about medical interventions influencing later decisions? Can you really ask people to make “end-of-life” treatment decisions in advance? What are alternative models to advance directives? What reforms are under way, and what else is needed?
• Knocking on Heaven's Door: The Path to a Better Way of Death by Katy Butler. An expertly reported memoir and exposé of modern medicine that leads the way to more humane, less invasive end-of-life care—based on Butler’s acclaimed NY Times Magazine piece What Broke My Father’s Heart. Against a backdrop of familial love, wrenching moral choices, and redemption, Butler celebrates the inventors of the 1950s who cobbled together lifesaving machines like the pacemaker—and she exposes the tangled marriage of technology, medicine, and commerce that gave us a modern way of death: more painful, expensive, and prolonged than ever before.
• Resources for end-of-life care Many useful links, with descriptions of what they're for. Categories: Academic; aging, health, and healing; allied members; children and family support; federal government; grief, healing, and spirituality; international resources; other.
• Oregon Emphasizes Choices At The End Of Life (Kristian Foden-Vencil, Shots, NPR Health News, 3-8-12) It turns out Americans facing death want something they also want in life: choice. A two-page form created in Oregon is providing insight into how people want to be cared for at the end of their lives. And the so-called POLST form — short for Physician Orders for Life-Sustaining Treatment — offers far more detailed options than a simple "do not resuscitate" directive does.
• An Impossible Choice: Deciding When a Life Is No Longer Worth Living ( Joanne Faryon, inewsource, ) An award-winning article by an investigative reporter -- a rare look inside a subacute unit in Coronado, Calif., one of hundreds statewide that house more than 4000 life-support patients. Berger award description: Their groundbreaking story looks at “vent farms,” the 125 care facilities across the state of California housing 4,000 patients being kept alive by machine. This number has doubled in the past decade due to advances in medicine. Many of these people appear to have no cognitive ability. All would perish if the machines were turned off. The number of people kept alive by artificial means has nearly doubled in the past decade. The average age of people who live in subacute care is 56. Subacute made so much money it subsidized the hospital’s emergency room and surgical unit. One week on life support can cost more than an entire year of health care for the average person enrolled in Medi-Cal.
• PolitiFact's Lie of the Year: 'Death panels' (Angie Drobnic Holan, PolitiFact, 12-18-09) How two words generated intense heat in the national debate over health care.
• A Family Says 'Enough' (Paula Span, Health, NY Times, 9-12-13). Before you agree to that pacemaker, know how hard it might be to undo. Deactivating an implanted cardiac device is neither euthanasia nor assisted suicide, and a doctor who feels morally unable to do it should find a colleague willing to help. The end of Katy Butler's story.
• The Best Possible Day (Atul Gawande, NY Times, 10-5-14) If you are dying, how do you want to spend your time? People who are seriously ill might have different needs and expectations than family members predict, "Hospice’s aim, at least in theory,... is to give people their best possible day, however they might define it under the circumstances." Asking the right questions might help us figure out how to make such the best possible day happen.
• Being Mortal: Medicine and What Matters in the End by Atul Gawande. “A deeply affecting, urgently important book—one not just about dying and the limits of medicine but about living to the last with autonomy, dignity, and joy.” —Katherine Boo
• Our unrealistic views of death through a doctor's eyes (Craig Bowron, Washington Post, 2-17-12) When 'we did all we could' is the worst kind of medicine." In elderly patients with a web of medical conditions, the potential complications of any therapy are often large and the benefits small....At a certain stage of life, aggressive medical treatment can become sanctioned torture.
• Too much intervention makes patients sicker (Aseem Malhotra, The Guardian, 7-19-14) A culture of over-investigation and over-treatment is now one of the greatest threats to western health...Even respected medical guideline panels appear to be influenced by corporate interests....a campaign known as Choosing Wisely is gaining momentum in the US. Part of the campaign involves communicating with patients that more expensive medicine doesn't necessarily mean better medicine. And this is reflected by the evidence that four fifths of new drugs are later found to be copies of old ones – not surprising perhaps when pharmaceutical companies spend twice as much on marketing new medications as on research.... Sometimes "doing nothing is the best approach. Questions such as: do I really need this test or procedure? What are the risks? Are there simpler safer options? What happens if I do nothing? And even how much does it cost?"
• The case for slow medicine (Richard Smith, BMJ, 12-17-12) "The characteristics of health systems are complexity, uncertainty, opacity, poor measurement, variability in decision making, asymmetry of information, conflict of interest, and corruption....It is time, said Domenighetti, to open up the black box of healthcare."
• When Did We Get So Old? (Michele Willens, Sunday Review, NY Times, 8-30-14) For boomers, the “what, me, get old?” generation, denial of aging is an important and difficult issue to tackle. “I had almost always been the youngest through most of my career,” says the former media executive. “Now I was the oldest, and it caused great discomfort.”
• The Right to Know, Then to Say ‘No’ (Jane Gross, New Old Age, NY Times 10-21-08)
• Letting Go (Atul Gawande, New Yorker, 8-2-10). What should medicine do when it can't save your life? Modern medicine is good at staving off death with aggressive interventions—and bad at knowing when to focus, instead, on improving the days that terminal patients have left.
*** How to Talk End-of-Life Care with a Dying Patient (video, Atul Gawande speaking at New Yorker festival, 10-12-10) An expert tells him what to ask patients about. Do they know their prognosis? What are their fears of what is to come? What are their goals--what would they like to do as time runs short? What tradeoffs are they willing to make? How much suffering are they willing to go through for the sake of added time? There is no checklist to mark off--instead, you need a series of conversations.
• Finding Liberation in Two Deaths (Jamie Brickhouse, The End, Opinionator, NY Times, 4-25-15, from his memoir, Dangerous When Wet) The last time I wished my mother dead, I meant it.... she was in what I now know were the final stages of Lewy body dementia." As one reviewer calls it, "a dark journey studded with gems of hilarity."
• Re-Examining End-Of-Life Care (Laura Knoy with guestsPatrick Clary – doctor at the New Hampshire Palliative Care Service in Portsmouth; John Loughnane – medical director at Commonwealth Community Care in Boston, on New Hampshire Public Radio 8-28-13)
• Planning For The End: When Courts Have To Make Medical Decisions (Todd Bookman, New Hampshire Public Radio 8-28-13)
• Planning For The End: Miraculous Recovery, Little Regret (Todd Bookman, NHPR 8-28-13)
• A Graceful Exit: Taking Charge at the End of Life (Claudia Rowe, Yes! magazine, 9-19-12) How can we break the silence about what happens when we’re dying? The best thing to come out of Compassion & Choices’ campaign (informed choices about how we die) may be a peace of mind that allows us to soldier on, knowing we can control the manner of our death, even if we never choose to exercise that power.
• Let's talk about dying (Peter Saul's TED talk, Nov 2011) We can't control if we'll die, but we can “occupy death,” says Dr. Peter Saul, an Australian intensive care doctor (intensivist) who is passionate about improving the ways we die. He calls on us to make clear our preferences for end of life care -- and suggests two questions for starting the conversation.
• The Art of Dying: A Mind-Body Transformation by Danielle Schroeder (ADEC)
• When to Refer to Hospice by Lisa Wayman (ADEC)
• Compassion & Choices: Choice and Care at the End of Life, including the blog entry A dying patient is not a battlefield (by Theresa Brown)
• A dying patient is not a battlefield (Theresa Brown, CNN Opinion, 8-31-10) Brown is author of Critical Care: A New Nurse Faces Death, Life, and Everything in Between
• Quiet deaths don't come easy (Melissa Healy, Los Angeles Times, 2-5-12) A study finds that Medicare patients near death are increasingly choosing hospice or palliative care over heroic measures in their last days — but that many go through futile hospitalizations and treatments first. "Doctors often fail to be clear about a patient's poor prognosis and to plainly state the likely consequences of continuing painful, aggressive care." If a patient's wish to avoid aggressive treatment is clear, "you need to prevent him from getting into that cycle of acute care," gerontologist Julie Bynum said, "because once they get into the hospital, it's really hard to get them out."
• More on end-of-life care and decision-making.
• Death Cafe At a Death Cafe people drink tea, eat cake and discuss death--a topic that too often remains in the closet because so many feel we should not talk about it. The aim of death cafes is to increase awareness of death, to help people make the most of their (finite) lives.
• Holding your own Death Cafe. Death Cafe's how-to guide.
• Death Cafes Breathe Life Into Conversations About Dying (Deena Prichep, All Things Considered, 3-8-13). Listen or read the story. "A death cafe isn't a physical cafe — it's more like a temporary event....And as the death cafe movement expands — talking about everything from advanced care directives to grieving rituals — it ends up being about not so much how we die but how we live."
On the same theme: Let's Have Dinner and Talk about Death. As described in the Atlantic article Discussing Death Over Dinner (Richard Harris, 4-16-16). A nonprofit (Death Over Dinner) is experimenting with shared meals where participants are asked to grapple with their own mortality. Founded by a group of medical professionals and wellness experts "concerned about the disconnect in the American health care system between how Americans say they would prefer to die (at home) and how they actually are more likely to die (in hospitals or care facilities)." (quoting Sixty and Me)
• Death over dinner (CrossCurrents, KALW, 6-21-17) How death cafes are attracting thousands of people in the Bay Area and beyond
• Introducing Death Café: How Talking Can Help You Overcome Your Fear of Dying (Sixty and Me) From the same site: End of Life Planning Doesn't Need to Be Depressing
• How to talk about death when no one else wants to (Nuri McBride, Offbeat Home & Life, 5-5-17)
• What is Death Café? (deathcafe.com). " Death Cafe is a group directed discussion of death with no agenda, objectives or themes. It is a discussion group rather than a grief support or counselling session." And more.
• Want to be more successful? Try thinking about death - study (Adam Boult, Telegraph, UK, 11-2-16)
• Dying Is Radical: Talking Taboo with a 'Death Doula' (Bodhi Be, Vice.com, 4-7-17) Bodhi Be is a "death doula," coffin maker, and executive director of Doorway into Light, a nonprofit organization on Maui, providing advocacy and educational programs for those approaching death and their caregivers.
• Death Talk Is Cool At This Festival (Jake Harper, Shots, Health News from NPR, 5-29-16) How to make thinking about death less somber? Hold a festival! Indianapolis did. Through art, film and book talks, residents explored everything from bucket lists to advance directives -- to help make conversations about death easier. The purpose of each gathering is to get people thinking ahead — about topics like what they want to accomplish in their remaining days, end-of-life care, funeral arrangements, wills, organ donation, good deaths and bad — and to spark conversations.
• Death Cafes Grow As Places To Discuss, Learn About End Of Life (Jaweed Kaleem, HuffPost, 2-4-13) "Death Cafes begin in 2004, when sociologist Bernard Crettaz began hosting pop-up "cafe mortals" in Switzerland. Crettaz, who incorporates the study of death into his research, spread the popular events to Belgium and France."
• Death Cafes bring grave matters to life (Geoff Olson, Vancouver Courier, 5-8-14) "Death is rarely a first-choice topic for casual conversation among friends and strangers. But with an aging population and growing issues involving palliative care and pain management — to say nothing of the background hum of our finite personal lives — there appears to be an increasing desire for public conversation about end-of-life matters."
• Facing death, over tea and cake (Jeb Phillips, Columbus Dispatch, 7-11-12)m Hospice volunteer hopes to promote informal discussion. "A British man named Jon Underwood held an informal discussion session about dying... There were plenty of refreshments — tea and cake — and he decided to call it Death Cafe. He based it on the cafe mortels popularized in Europe by a Swiss psychologist."
• Talk about death, hold the sugar (Alex Beam, Boston Globe, 7-4-13) "Here is what the Death Café isn’t; it’s not a support group for men and women who are grieving, although it probably functions that way for some people. Our meet-up was generally cerebral. People asked each other questions about death, with the answers wandering all over the lot."
• 'Death cafes' normalize a difficult, not morbid, topic (Janice Lloyd, USA TODAY, 4-7-13) "Death cafes," a trend that started in England, are spreading across the USA.
• Death and scones: Cozy gatherings make end-of-life conversations less scary ( Tara Bahrampour, Wash Post, 5-3-14)
• The Art of Dying Well: A Practical Guide to a Good End of Life by Katy Butler. A reassuring and thoroughly researched guide to maintaining a high quality of life—from resilient old age to the first inklings of a serious illness to the final breath—by the New York Times bestselling author of Knocking on Heaven's Door.
• On the Art of Dying Well (Rob Waters interviews Katy Butler, California Health Care Foundation, 2-21-19) "We need to concentrate on the psychological and spiritual challenges of decline and death and stop delegating the management of emotional and spiritual tasks to a medical system with poor emotional intelligence." Includes the story of Louise Manfreddi, who Katy said had the best end-of-life experience of anybody she'd known.
• Knocking on Heaven's Door: The Path to a Better Way of Death (Katy Butler) Doctors tend to overestimate by 5 to 6 times the length of time failing patients have left. As a result, important conversations do not take place and family members are unprepared and insist on "doing everything" to save the patient. It takes weeks, maybe months, to really absorb the reality of a terminal diagnosis -- people go in and out of denial, taking time to process the news. From Abraham Verghese's New York Times review: "Although most of us claim no desire to die with a tube down our throat and on a ventilator, the fact is, as Katy Butler reminds us in “Knocking on Heaven’s Door,” a fifth of American deaths now take place in intensive care, where 10 days of futile flailing can cost as much as $323,000..." "A year later, her father was outfitted with a pacemaker. The device would keep his heart functioning even as he descended into dementia and almost total physical helplessness over the next five years....Butler finds that the health care system — and society — seem quite unprepared for a patient like her father. Had he received a diagnosis of a terminal illness, the family would have been supported by a Medicare-funded hospice team. If he had died, there would have been a funeral, condolences, company. 'But there is no public ceremony to commemorate a stroke that blasts your brain utterly, and no common word to describe the ambiguous state of a wife who has lost her husband and become his nurse.' Much of what ails health care, as Butler discovers, revolves around reimbursement issues. Doctors are paid to do things to people, not for people. She takes particular issue with a cardiologist’s decision to put in a pacemaker despite the reservations of her father’s trusted physician. Knocking on Heaven's DoorThe 2015 Quality of Death Index: Ranking palliative care across the world (PDF, a report by The Economist Intelligence Unit, 71 pages). Customer satisfaction surveys are unsuitable for ranking the quality of death, so The Economist devised a ranking of end-of-life care, rating 40 mostly rich countries rates by how well they care for the dying. "Britain tops the table. For all the health care system's faults, British doctors tend to be honest about prognoses, the mortally ill get plentiful pain killers and a well-established hospice movement cares for people near death. Countries such as Denmark and Finland rank lower because they concentrate more on preventing death than on helping people die without suffering pain, discomfort and distress." (Quality of death (2010). A case study for the US appears on p. 31 of the 2015 report. The US ranks 9th for palliative care, 6th for palliative care and health delivery. "The trouble is, patients are only eligible for reimbursements for home care if, having been discharged from hospital, they have a '[skills need;—that is, they require a nurse or physical therapist to help them learn to take insulin or to dress a wound [for example]. And to qualify for hospice home care requires two doctors to say the patient is likely to die in the next six months." And in most cases we have no idea until the very end," says Dr. Meier....What this means is that private sector insurers--rather than the government--are driving service provision because they have recognized that it is in their financial interests to prevent unnecessary hospital stays and emergency room visits...the private sector is nimbler and more innovative than the government And it is easier for companies to offer palliative care services than for the public sector, which was famously accused of planning to run 'death panels.' Conversely, in the long term, Dr. Meier worries about the profit motive." The traditional fee-for-service model of Medicare creates incentives to use hospital stays and intensive and emergency care, which often results in late hospice enrollment.
• When my dad was dying, we forgot to ask him how he wanted to live (Sarah Dew, Inependent, UK, 5-22-17) Professionals arrived to do the job they were sent to do – take bloods, give drugs, request a hospital bed at home. They didn’t take the time to understand that what Dad wanted most was to be outside, to feel the sun, wind and rain on his face....When it comes to improving end of life care, calls are repeatedly made for more palliative care services, for better access to pain control, for better planning....But the end of life is not just about dying. It is about living well, right up until the end. And throwing more professionals at “the problem” of dying will not enable us to die well (nor do we have the resources to do so). We must start with what it means to live well..."
• A 'good death' by going gentle into that good night (David G. Allan, CNN, on The Wisdom Project, 8-16-16) In the section on the 'good death' checklist, these three are at the top of most people's lists (and I quote):
---Feeling "at peace" and in a good emotional head space
---Dying in a location where the conditions are ideal for the patient, whether that's in one's bed with family around or the hospital with doctors nearby.
This thoughtful piece may help you in discussions you have with your doctor, your friends or family, and so on. Our condominium is holding a meeting of people who want to have these end-of-life planning conversations while we are healthy, but also while we're all too aware that the end could come unexpectedly and quickly, so we'd better start thinking about it and being practical.
• The Most Important Talk You Need to Have With Your Doctor (Barbara Sadick, AARP, 1-28-16) A talk with his primary care physician about his wishes for care near the end of life gave Bob Samuels "comfort that dying doesn't have to be painful — and more importantly, the likelihood of my end-of-life wishes actually being followed is now quite high." As of Jan. 1, 2016, Medicare has begun reimbursing physicians and other health care professionals for talking with patients about future medical decisions and their priorities for care at the end of life.
• Starting the Conversation About End-of-Life Care (AARP, 12-21-15) How we want to die is the most important and costly conversation America isn’t having.
• When a doctor and patient disagree about care at the end of life (Ravi Parikh, WaPo, 4-18-16) End-of-life discussions are opportunities to learn more, to start a conversation that we as doctors have been missing out on for quite a while. Once we listen enough to learn, maybe those “goals of care” discussions will start focusing on the goals of the patient, not the doctor. "More resources for advance-care planning exist. A nonprofit called ACP Decisions has created videos to help physicians explain emotionally charged end-of-life concepts such as CPR, hospice and feeding tubes. At my hospital, we have used simulated conversations with patient actors to help residents approach the end-of-life conversation."
• Mission creep doesn’t benefit patients at the end of life (Samuel Harrington, Washington Post, 8-22-16) At a certain point, Harrington's father had to make "an important distinction, between care at the end of life (in this case, palliative care for pain) and treatment (aneurysm repair)." He also wanted an "exit strategy." Much has changed in medicine, but "Painful, futile treatment continues to this day, particularly with elderly patients who often are not informed of the difference between palliative care, designed to minimize pain while trying to preserve quality of life at the end, and aggressive treatment more designed to prolong life at any cost, using such methods as surgery or chemotherapy. Often they are not informed about the benefits of letting some conditions run their course." ... In another situation, "After listening carefully to what the doctor offered, the patient posed the question, 'How long can I expect to live if I decline chemotherapy, and how much longer can I expect to live if I undertake therapy?' When the doctor responded that the answer to both questions was three to six months, she cut short the consultation." ... "If asked by patients, most doctors are willing to discuss quality of life at the expense of quantity of life. In elder care, that conversation should include a discussion about futile treatments vs. making sure the last days on earth are comfortable."
• A nurse with fatal breast cancer says end-of-life discussions saved her life (Amy Berman, Washington Post, 9-28-15) Berman, a nurse expert at a foundation focused on improving the life of older adults, writes a letter to Centers for Medicare & Medicaid Services: "Faced with an incurable disease and a prognosis where only 11 to 20 percent survive to five years and there is no statistic for 10-year survival because it so rarely happens, I came to understand that my priority was to seek a 'Niagara Falls trajectory' — to feel as well as possible for as long as possible, until I quickly go over the precipice. Quality of life is more important to me than quantity of days, if they are miserable days." She makes an excellent pitch for supporting home-based care for frail and dying elders.
• Terminal breast cancer leads woman to pick palliative care, not aggressive therapy (Amy Berman | Health Affairs, Washington Post, 4-30-12) "Breast cancer, in general, has a five-year survival rate nearing 90 percent. But inflammatory breast cancer, which I suspected the spot might be, is different." One expert advises aggressive treatment. But, she writes, "The 'treat aggressively' approach can leave patients bruised and battered, wishing they were dead. Yes, perhaps a few months of added life come with it — but at what cost? Furthermore, recent evidence suggests that people with certain cancers might actually live longer — and better — using a palliative approach, such as the one I’m taking." "As you read this piece, I’m heading toward two years into a terminal diagnosis. I have the most deadly form of breast cancer, and it will eventually kill me. So far the disease seems to be held at bay by one small yellow pill each night (an estrogen blocker to slow the cancer’s growth), some extra vitamins and minerals, and a monthly infusion to stave off such problems as spontaneous fractures that can be caused by the cancer eating at my spine." Her advice: Choose a doctor who treats the patient, not the cancer.
• Letting Go (Atul Gawande, New Yorker, 8-2-10). What should medicine do when it can’t save your life? Modern medicine is good at staving off death with aggressive interventions—and bad at knowing when to focus, instead, on improving the days that terminal patients have left.
• Being Mortal: Medicine and What Matters in the End by Atul Gawande. Read Sheri Fink's review (NY Times, 11-6-14) "In the first part of the book, Gawande explores different models of senior living — from multigenerational households to newfangled nursing homes. In the latter part, which is shorter, he shifts somewhat abruptly to end-of-life medicine, promoting hospice as a model of care. The two sections are anchored by two of Gawande’s most memorable New Yorker essays, which make up two of the book’s eight chapters — “Things Fall Apart” and “Letting Go.” Around them are rich stories from his own family."
• How Doctors Die (Ken Murray, Zócalo Public Square, 11-30-11) It's not like the rest of us, but it should be. "If there is a state of the art of end-of-life care, it is this: death with dignity. As for me, my physician has my choices. They were easy to make, as they are for most physicians. There will be no heroics, and I will go gentle into that good night. Like my mentor Charlie. Like my cousin Torch. Like my fellow doctors."
• The Rituals of Modern Death (Haider Javed Warraich, The End, Opinionator, NY Times, 9-16-15) Increasingly, when death is imminent, many patients and their family members seek a different end than aggressive attempts to extend life. “No pain, no cry, just peace.” "Much like the overarching experience of patienthood, the end of life has been sterilized. For most of human history, death has been an intensely spiritual experience....These days, instead of a shaman, patients are surrounded by strangers in scrubs. Death – one of the most complex events that can occur in a hospital – is usually handled by the youngest physicians." Warraich Worth reading.
• 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.
• Dying Well in Missoula (Linda Wertheimer, Robert Siegel, All Things Considered, 11-6-1997) NPR’s Howard Berkes travels to Western Montana to report on the work underway there to change a town’s attitudes about death, grief, and the care of the dying. Dr. Ira Byock, a hospice physician in Missoula, believes attitudes can change, that the care for those at the end of life can be improved, and that this will, in the end, improve the quality of life in the community. The project has begun by trying to assess the "base level" attitudes in the town by having people come together to tell their stories to one another. Others in the project are working to get people in Missoula to think about how they want to be cared for in their final days and to complete advance directives such as Living Wills and Durable Powers of Attorney. Still others in the project are working to create shrines to the memory of people they have loved who have died. You can read the transcript.
• Dying Well Is the Best Revenge (Paul Wilkes, NY Times Magazine, 7-6-97) In its insistence on shaping a death of ''quality,'' hospice may well be as aggressive as medical treatment. This piece about the uneasy relationship between mainstream medicine and the hospice movement, with patients often caught in the middle during the most emotionally anguished passage of life. Where modern medicine could literally wear down a body -- and both public and family finances -- with well-intentioned aggression in an effort to forestall the inevitable, hospice took an entirely different approach. Hospice accepted the inevitable: the terminally ill were going to die. The object was to focus on quality -- not length -- of life at its end. Hospice workers fear that the movement will become another cost-effective, coldly efficient service, provided by for-profit -- and even not-for-profit -- groups without the individual care, attention and team approach so important to the hospice philosophy. This piece focused on Mike Morris's journey and occasional struggle toward the kind of death he wanted.
• The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life by Ira Byock . Read Paula Span's review, The Caregiver's Bookshelf: Dying by Degrees (NY Times, 3-20-12) "That we still aren’t dying well has become a familiar refrain among those who talk and write about end-of-life care... What makes Dr. Byock’s book particularly valuable is the chance to eavesdrop on the doctors we’re often quick to blame. He tells what it’s like on the other end of the stethoscope."
• My Mother, Your Mother: Embracing "Slow Medicine," the Compassionate Approach to Caring for Your Aging Loved Ones by Dennis McCullough
• A Bitter Pill: How the Medical System Is Failing the Elderly by John Sloan. An investigation into why the health care system does not work for old people, who are in fragile health, and what we can do about it. Sloan argues that we must understand what people in poor health at the end of their lives really need: comfort, dignity, and quality of life. He also argues that caregivers, sons, daughters, nurses, doctors, and social workers -- all of us -- must assume responsibility for what happens to the elderly and give these loved ones the kind of care we hope, one day, someone will give us.
• A Bittersweet Season: Caring for Our Aging Parents--and Ourselves by Jane Gross
• 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
• 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)
• End of Life Stories (Nell Minow's blog). This is a safe place to share stories of love and loss, devastating grief, exhausting care-giving, memorials, advanced directives, mourning, hope, and despair. We want to hear about what you wish you had known or done differently, what you wish those around you had known or done differently, and what went right.
• Care of Chronically Ill Patients during the Last Two Years of Life (Dartmouth Atlas of Health Care)
• 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."
• 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
• End of Life: Helping With Comfort and Care (National Institute on Aging website) Planning for end-of-life care decisions. Talking about end-of-life wishes. Advance directives and other documents.
• Despite Gains In Advance Directives, Study Finds More Intensive End-Of-Life Cancer Care (Michelle Andrews, KaiserHealthNews, 7-21-15) "For physicians, offering treatment, even if there’s little chance it will help, is the only way they may know to show their loyalty and love for a patient, says Diane Meier, director of the Center to Advance Palliative Care. We have to change the training or nothing will change....she hopes that the Centers for Medicare and Medicaid Services will require doctors to get some training in how to introduce and take part in conversations about advance care planning rather than simply check a box on a form that says a conversation took place."
• Imperfect endings: Baby boomers are beginning to grasp what it means to grow old in America (Carol Robidoux, Concord Monitor, 2-6-15) Those baby boomers among us lucky enough to still have a parent or two left are already living between worlds – trying to figure out how to gracefully escort our parents through the valley of the shadow of death while juggling the trials and tribulations of being fifty-something – which for most of us means our own looming health issues, compounded by teens or college-aged kids, over-employment or unemployment, maybe long-distance caregiving, or maybe dividing care with siblings scattered around the map.... It was costing my cousin close to $8,000 per month for his mother’s nursing home care in Indiana. He tried to keep her in her home, but had some bad experiences with in-home caregivers who were less than trustworthy. The nursing home seemed safer. Yet, in the end, she fell – more than once – suffering hematomas and humiliation. “We can’t be with them around the clock,” one of the caregivers told him. The tribulation for the rest of us comes as we struggle to make the tough joint decisions with siblings or spouses. We could agree to disagree, but that doesn’t help get things done. So it gets messy, even ugly, with collateral damage that may be permanent."
• Aging Solo: Okay, I don’t have a child to help me, but I do have a plan ( Sheila Sullivan Zubrod, WaPo, 8-15-16) "We need a manifesto on how to age without children — but with our friends — from choosing the best place for us to grow old to making sure we know our best friends’ Plan B logistics before they all disappear on us....Location is HUGE to anyone aging solo....I had flourished in Washington, Los Angeles and Manhattan, but never realized all three were rich in museums, parks, mass transit, theater and all manner of unmarrieds. In Tampa, culture meant children’s museums. There were no foreign films or documentaries, no world-class museums, no opening nights for new plays. People’s lives and leisure time revolved around their children. Single friends seemed like an afterthought....Remember this: When you’re past 50 and single, location is 75 percent of the enchilada. Subways matter. Proximity to friends matters.
• Natural Causes: An Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves to Live Longer by Barbara Ehrenreich.
• How We're 'Killing Ourselves To Live Longer' (Barbara Block talks with Barbara Ehrenreich and Dr. Ronan Factora, a doctor at the Cleveland Clinic on WBUR's On Point, 4-18-18)
• Preparing for the Death of a Terminally Ill Loved One: What to Expect, and How to Help the Entire Family Move Forward (Neptune Society) Very practical.
• Providing Comfort at the End of Life (National Institute on Aging). Information on physical comfort, mental and emotional needs, spiritual issues, and practical tasks.
• When my dad was dying, we forgot to ask him how he wanted to live (Sarah Dew, Independent, UK, 5-22-17) Professionals arrived to do the job they were sent to do – take bloods, give drugs, request a hospital bed at home. They didn’t take the time to understand that what Dad wanted most was to be outside, to feel the sun, wind and rain on his face
• The Symptoms of Dying (Sara Manning Peskin, MD, NY Times, 6-20-17) "Dying has its own biology and symptoms. It’s a diagnosis in itself. While the weeks and days leading up to death can vary from person to person, the hours before death are similar across the vast majority of human afflictions. Some symptoms, like the death rattle, air hunger and terminal agitation, appear agonizing, but aren’t usually uncomfortable for the dying person....While few of us will experience all the symptoms of dying, most of us will have at least one, if not more. This is what to expect."
• All Choked Up (Mara Altman, The End, NY Times, 9-9-15) Her grandmother's eyes have been closed for days. Hospice warns that no more than broth should be provided, for fear of choking. She rouses briefly to ask for a bagel--she's struggled all morning to request it. What to do??
• A Necessary Look at the End of Life in an ICU (Ellen Rand, Last Comforts blog). Ellen recommends three things: (1) "a remarkable 24-minute short film, “Extremis” (available now on Netflix)," a relatively short but powerful film which "shows how the technology that can prolong our lives when we are desperately ill raises important questions about the difficulties in making decisions at the end of life." (2) "The Waiting Room," a 2012 documentary about "the complexities of health care in the United States by focusing on the ER waiting room of a public hospital in Oakland, Calif., where a diverse -- and largely uninsured -- collection of patients seek care." And (3) the book Extreme Measures: Finding a Better Path to the End of Life by y Jessica Nutik Zitter MD (due out Feb. 2017).
• As End Nears, Cancer Patient Struggles With Cost of Long Term Care (Viji Sundaram, New American Media, 11-26-12)
• My husband was dying, but his mind was still good. It was hard to let go. (Katherine McQuay Lewis, WashPost, 7-11-16) Her husband was diagnosed with stage 4 head and neck cancer, and they beat it. "But the side effects of the grueling, twice-a-day radiation gradually destroyed Dave’s health." Keeping him alive was expensive, and difficult...."All I know, now, is that until you live through it, you have no idea how you will feel. And that there are no right answers — only bad choices and worse choices."
• Alzheimer's disease: Anticipating end-of-life needs (Mayo Clinic) As an Alzheimer's caregiver, you might be your loved one's most powerful voice. Make decisions for your loved one that ensure respect, dignity and comfort until the end of life.
• Being Prepared for the Final Days (CBS News, 4-27-14) We can't know for sure when the end will come -- but at least we can be prepared. Dean Reynolds takes us to LaCrosse, Wisconsin, a lively Mississippi River town that is putting those words into practice. Bud Hammes is a medical ethicist at the Gundersen Health
System here, who started the program called "Respecting Choices" 20 years ago, after seeing firsthand what death was like without it. One key point for Hammes as he spreads the word to other states and countries is that patients at the end of their lives often choose to forego efforts to extend their lives at all costs. That, he says, translates into shorter, less expensive stays in the hospital. "The ultimate content of this conversation, I think, isn't about death," said Hammes. "I think the ultimate topic that's being discussed is how people care for each other. And so what comes out at the end of the conversation is, 'I love you, and I now know how to take good care of you.'" See also Respecting Choices -- Advance Care Planning (Gundersen Health's Respecting Choices program is an "evidence-based model of advance care planning (ACP) that creates a healthcare culture of person-centered care; care that honors an individual’s goals and values for current and future healthcare."
• 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."
• Coming Full Circle, Doulas Cradle The Dying (Bruce Horovitz, Kaiser Health News, 4-10-17) "As Ellen Gutenstein lay in her bed at home, dying from lung cancer that had metastasized in her brain, a heart-wrenching Mother’s Day card arrived from her granddaughter. Neither Ellen’s daughter — nor her husband — felt they could read it to her without breaking down. Fortunately, a volunteer from the local hospice’s doula program was on hand to help the then-77-year-old resident of Ridgewood, N.J., comfortably die at home. She picked up the letter and read it with compassion."
• How to Avoid Family Conflicts after the Death of a Parent (Neptune Society)
• Do you want to die at home? Here's why you probably won't. (Haider Javed Warraich, OpEd, Los Angeles Times, 9-14-15) "An overwhelming amount of research from around the world has shown that home is where most patients and their family members would like to take their last breath. But not everyone has that option." If "we want more people to have the option of dying in their own homes, we need to push insurance providers to increase end-of-life options. Although most insurance pays for hospice care, many patients also require increased support at home, which is not typically covered....we also need a culture change, convincing patients and their families that more is not always better in healthcare, particularly when death is inevitable." Read which factors affect your ability to die at home.
• A dying patient is not a battlefield (Theresa Brown, CNN Opinion, 8-31-10)
• End of Life and Palliative (California Healthcare Foundation). Toward the end of life, too many people receive ineffective, expensive medical treatments while their physical comfort, spiritual, and emotional needs are poorly addressed. CHCF is working on many projects to promote palliative care, to communicate patient preferences and care plans across care settings, and to reduce medical errors, avoidable hospitalizations, and unwanted care. Read more.
• End-of-life care for people who have cancer (National Cancer Institute)
• Five Wishes lets your family and doctors know:
* Who you want to make health care decisions for you when you can't make them.
* The kind of medical treatment you want or don't want.
* How comfortable you want to be.
* How you want people to treat you.
* What you want your loved ones to know.
• How Doctors Die (Ken Murray, The Health Care Blog)
• Informed Refusal (Richard Gunderman, The Health Care Blog)
• Kristie Miller's Letter of Intent (Kristie's letter is a good model for letting your family and friends know what you want done if you are ill, incapacitated, or facing the end of life)
• Media Death vs. Reality (Lisa Howard-Fusco, American Funeral Director, June 2015) Media show gazillions of murders and very few funerals. Only "Six Feet Under" comes close to portraying funerals realistically. Is it any surprise so many of us fail to plan ahead for our funerals, experience sticker shock when the time comes to plan one, and tend to avoid discussing death-related practicalities?
• Nursing Home Inspect (ProPublica, journalism in the public interest -- find nursing home problems in your state). A piece from Charles Ornstein about what's new about the site.
• Preparing for a Loved One to Die at Home (Susan Seliger, New Old Age, NY Times, 1-14-13) Twelve practical things to do to make dying at home comfortable and workable. A practical follow-up to Linda G. Beeler's piece, Turning a Home Into a Hospital (NY Times, 11-26-12)
• Should terminally ill patients be able to choose when they die? (PBS, 10-14-14 ) After being diagnosed with terminal brain cancer, 29-year-old Brittany Maynard moved her family from California to Oregon to die on her own terms. Oregon law allows Maynard to take lethal prescription medication to end her life. Jeffrey Brown gets debate from Barbara Coombs Lee of Compassion & Choices and Dr. Ira Byock of Providence Institute for Human Caring.
• When Dialysis Is the Wrong Approach to End-Stage Kidney Disease (Vanessa Grubbs, California Health Care Foundation, 7-18-16) "Dialysis may not be the best option for everyone with kidney failure. Several European studies have shown that dialysis does not guarantee a survival benefit for people over age 75 who have medical problems like dementia or ischemic heart disease in addition to end-stage kidney disease. In fact, it often worsens their quality of life. One study found that elderly people who had dialysis lived on average a year longer than those who didn't — but almost all of this added time was spent in the hospital, traveling to and from dialysis, or undergoing dialysis treatments."
• Your Medicare Coverage: Preventive visit & yearly wellness exams (accessed 6-20-14)
• What to Say to Someone Who Is Dying (What to Say to Someone Who is Dying, A Place for Mom) There are things you can say that will help your loved one maintain dignity and respect during their final days.
• How one of my closest friends taught me how to die (Peter Weber, The Week, 3-11-16) "Last year, in the warm Austin fall, when it wasn't clear if the chemotherapy was working, Mike would invite friends on walks, one at a time, presumably for company as well as exercise. I hope he got something more out of them; I know the rest of us did. On one of our walks, he told me he'd never imagined he would become "that guy," the person who makes everyone around him reconsider their priorities and, yes, appreciate their life in a new way."
• A dying mother wrote her children letters, leaving a gift of love for years (Steven Petrow, WaPo, 8-31-18) Jacquie wrote multiple letters to each child, to be opened at different life milestones. Jacquie wanted to be “present with her kids,” he said, at each of those important moments.
• ALS diagnosis inspires family to live 'magical year' (YouTube video). Journalist Susan Spencer-Wendel was in her prime when she got a devastating diagnosis: ALS. Knowing she only had a few years to live, she and her family started tackling all the items on her bucket list. "Don't cry because it's over; smile because it happened," she said. With one finger, she typed/wrote the book Until I Say Good-Bye: My Year of Living with Joy .
• The Things That Carried Him (Chris Jones, Esquire, 8-30-10, originally May 2008). '
• The Breathing Ghost of Veterans Day (Chris Jones, Esquire, 11-11-10)
• From Iraq to Grave, We Can Finally Remember the Fallen (Chris Jones, Esquire, 2-26-09) The Pentagon has lifted its 18-year ban on news photographs of military caskets as they are returned to American soil.
• The Real Heroes (James B. Stewart, The New Yorker, 2-11-02) A love story.
• Finding Your Way to Say Goodbye: Comfort for the Dying and Those Who Care for Them by Harold Ivan Smith
• When 3,500 Strangers Helped Comfort a Dying Man (Brian Anthony Hernandez, Mashable, 10-27-13) ""It may sound silly, but with media and politics often telling us we're all so different, it was a great reminder — that despite any real or contrived differences — we're all people and we actually have a lot in common," Brandon says. "We all have feelings, emotion and compassion. #SkyBluePink was just one way to unlock this."
• Birth of a Hospice Nurse (Sara Conkle, Pulse: Voices from the Heart of Medicine, 7-10-15) "Many years after witnessing that young mother's grief, I heard the phrase "lean into the pain." Instantly I recalled her two physicians. One, dealing with the chaos of the emergency room, performed his duties, snapped the lid on a specimen container and walked out of the room. The other literally leaned in, a precious form in his hand. Despite how differently each physician had responded, I had come to know them both as caring, competent and respected doctors, but the resident's words and actions stayed with me."
• Offering comfort to dying patients (Thomas Curwen, Los Angeles Times, 7-15-12) "No One Dies Alone was started in Oregon in 2001 when a dying man asked a nurse to sit with him. She agreed but first needed to make her rounds. When she returned, the man was dead, and the nurse resolved to enlist volunteers to stay with patients who were alone and close to death." '
• Hearing is the last sense to go (Yumiko Sasho) Music therapists can play a unique role in end-of-life care.
“For what are we, if not a body taking a mind for a walk, just to see what's there?” ~ Cory Taylor, from her book Dying: A Memoir. See Patricia Wall's review, ‘Dying: A Memoir’ Is a Bracing Illumination of Terminal Illness (NY Times, 7-26-17) "It is commonly said that end-of-life memoirs offer wisdom for the living. That is certainly true here. Dying has sharpened Taylor’s vision, occasioning a thorough life inventory, and writing, her métier, has given her a chance to linearize her thoughts. 'I am making a shape for my death, so that I, and others, can see it clearly,' she writes, 'and I am making dying bearable for myself.'...Dying turns many of us into counterfactual historians. But the alternate universe Taylor imagines is unusually provocative. It’s almost inevitable that dying makes you reflect on your past, which perhaps explains why 'Dying' is not merely a meditation on the present, but a journey backward in time, all the way to Taylor’s girlhood."
• Can't We Talk About Something More Pleasant?: A Memoir Spanning the last several years of their lives and told through four-color cartoons, family photos, and documents, and a narrative that elicits both laughs and tears, Chast’s memoir is both comfort and comic relief for anyone experiencing the life-altering loss of elderly parents.
• The Miracle In Front Of You: Raymond Barfield On Practicing Medicine With Compassion (Janice Lynch Schuster interviews pediatric oncologist Raymond Barfield, The Sun, Jan. 2016) Pediatric oncologist Raymond Barfield on practicing medicine with compassion. "Keep in mind that 70 percent of the children I treat are cured of their cancer. For the most common childhood cancer — acute lymphoblastic leukemia — we are reaching a 90 percent cure rate. Forty years ago that rate was less than 10 percent. But if 70 percent are cured, that means 30 percent die. Helping people near the end of life has changed me. Before I became a physician, I had never seen anyone die, and death felt like a vague future possibility. Now I live every day in awareness of death, and my life is better for it. My dying patients help me to delight in small wonders and to grieve the times when I’ve hurt others."
• Bettyville: A Memoir by George Hodgman. “The idea of a cultured gay man leaving New York City to care for his aging mother in Paris, Missouri, is already funny, and George Hodgman reaps that humor with great charm. But then he plunges deep, examining the warm yet fraught relationship between mother and son with profound insight and understanding.” —Alison Bechdel, author of Fun Home
• Baby Boomer's Last Revolution Will Be Changing the Way We Die (Nell Minow, Huff Post, 1-5-16) Brilliant overview of a generation (and maybe a few before and after that generation). Must read on "why Baby Boomers, now in our 60s and caring for parents in their 80s and 90s, are going to change the way we think about end of life care. " In Part 2 she writes about how we begin.
• She needed treatment to save her life. Instead, she chose to live it. (Sarah Larimer, WaPo, 10-4-16) She was diagnosed with a large mass, uterine cancer, but when the doctor wanted to go over the possible course of treatment — surgery, chemotherapy, those kinds of procedures — she told the doctor that she would have none of it. She and her son and daughter-in-law spent a year driving around the country. "We've come around to the fact that this isn't even a sad story, at all," her daughter-in-law said. "There's nothing sad about it. It is the most graceful way to land. It was a soft landing. She used up every last ounce of her little body, and lived till the last moment."
• Our unrealistic views of death, through a doctor’s eyes (Craig Bowron, Washington Post, 2-17-12) "In elderly patients with a web of medical conditions, the potential complications of any therapy are often large and the benefits small. It’s a medical checkmate; all moves end in abdication....The family may ask me to use my physician superpowers to push the patient’s tired body further down the road, with little thought as to whether the additional suffering to get there will be worth it.... it’s typically the son or daughter who has been physically closest to an elderly parent’s pain who is the most willing to let go. Sometimes an estranged family member is 'flying in next week to get all this straightened out.' This is usually the person who knows the least about her struggling parent’s health; she’ll have problems bringing her white horse as carry-on luggage. This person may think she is being driven by compassion, but a good deal of what got her on the plane was the guilt and regret of living far away and having not done any of the heavy lifting in caring for her parent." Read this is you are caring for (or worrying about) a frail elderly with many chronic health problems.
• Unforgettable: A Son, a Mother, and the Lessons of a Lifetime by Scott Simon. """Patricia Lyons Simon Newman was a bombshell: drop-dead gorgeous, glamorous, hilarious, insightful, curious, a woman whose bounding, generous, mischievous presence beckoned to others like the first warm sunshine of spring. She was wise, irreverent, brave in loss and grateful in joy, and urgently, thankfully alive to the beauty in everything and everyone. And before anything else, she was a profoundly devoted mother to her son, NPR host, journalist, and author, Scott Simon. In his poignant, funny, intimate memoir of his last days with her, Simon reflects on the lessons she taught him, the preciousness that death gives to life, and the endless resonance of love. This is an unforgettable meditation on a life lived, as Hemingway wrote, 'all the way up.'"~Laura Hillenbrand, author of Unbroken: A World War II Story of Survival, Resilience and Redemption
• A Beautiful Death (multimedia story, Nancy Metcalf, Consumer Reports) Paul Scheier lived a full and loving life. So when his cancer returned at age 86, he said no more hospitals, no chemo. He faced the end on his own terms -- something that's not so easy to do in America today. But he showed it can be done. Click on these headings to learn about:
---Going your way. The most effective way to enforce your end-of-life wishes is to create an advance directive or a living will and to appoint a health care proxy.
---When things go wrong. Paul's death represents a best-case scenario. What happens when things don't go as smoothly? Here's what to do.
• A Quiet End to the ‘Death Panels’ Debate (Paula Span, NY Times, 11-20-15). In October, a six-year struggle about advance-care consultations came to a quiet resolution. With hardly a ripple of dissent, Medicare authorized payment for end-of-life discussions. "For every hospital social worker lamenting that patients haven’t discussed how they want to be cared for when they’re extremely ill and the medical options are running out, there are patients or family members arguing that they knew and expressed exactly what they wanted — and were overridden." We’ve been urged for years to have this conversation. Campaigns like The Conversation Project, Prepare and Five Wishes try to help people tackle it. See Conversations About Dying (www.comfortdying.com)
• Toward ‘A Beautiful Death’ (Jenny Gold of Kaiser Health News interviews Nancy Metcalf about the story she did for Consumer Reports). Read the transcript; it's a guide for how to anticipate things in your own life. "We have a very medicalized way of death in the United States." Although 86 percent of adults polled said they would like to spend their final days at home, and 50 percent preferred pain management and comfort care to other medical treatments, but only 47 percent had completed an advance directive or living will and 61 percent had never heard of palliative care, which is a tremendous resource. You can refer yourself to hospice; you don't need a doctor to do so.
• A good death: Like Sue Otterbourg, more people are taking control of the end (Barry Yeoman, Indy Week). "Gentler end-of-life care saves money, eases depression and potentially extends lives. Yet stories like Otterbourg's remain exceptional. There is still too much futile treatment—with all the side effects, hospital noise and invasive hardware—and little of the peacefulness people say they want."
• Return of the Hero (Peg Ackerman, Pulse, 5-24-13). A hero's natural death.
• Homecoming by Ronna L. Edelstein (Pulse, 7-31-15). "Like many middle-class people, he had saved too much money to qualify for Medicaid, but not enough to pay for the facility....I faced a harsh choice: to deplete both of our nest eggs to pay for the facility, or to bring him back home....The nursing-facility staff prepared me for Dad's homecoming. They taught me practical skills--a better way to lift him from his wheelchair, how finely to cut his food in order to keep him from choking, the trick to putting his pressure socks on him without ripping them. These tips made our life together much easier."
• Last Stand by E. Wesley Ely (Pulse). This story of a woman dying of ALS, and her husband's account of how much she wants her life to be extended, may change some attitudes.
• Lottery Tickets (Elizabeth Alexander, Personal History, New Yorker, 2-9-15) Beautiful piece about grieving for a husband.
• Ask Judy. Do you, or someone you care about, know someone who is dying? Each Wednesday Judy Bachrach answers your questions or offers advice to the dying and those who care about them.
Death (a five-part series) (To the Best of Our Knowledge, WNYC, NPR, started 1-2-15)
• Episode 1 - Examining Death: The Reckoning Death is too often shielded from public view and our daily lives.
• Episode 2 - Examining Death: Exit Plan What are the emotional and financial costs of extending life?
• Episode 3 - Examining Death: The Last Moment (1-13-15) What are the medical, spiritual and psychological questions surrounding our time of passing?
• Episode 4 - Examining Death: The Wake How do we mark death and celebrate lost lives around the globe?
• Episode 5 - Examining Death: After Life Does death gives life meaning? Explores the philosophical and religious dimensions of mortality and the afterlife
A Right to Die, a Will to Live (Robin Marantz Henig, NY Times Magazine, 7-17-13). After Brooke's cycling accident, Peggy Battin had a new perspective on the right of people to end their own lives. "Proponents generally focus on only one branch of the decision tree: the moment of choosing death. There’s much talk of living wills, D.N.R. orders, suicide, withdrawal of life support, exit strategies. Brooke’s experience has forced Peggy to step back from that moment to an earlier one: the moment of confronting one’s own horrific circumstances and choosing, at least for now, to keep on living. But the reasons for that choice are complicated too."
How a Cheerful Monk Became a Doctor of Death (Alizah Salario, Narratively, 7-9-15) As the only practicing Tibetan monk to complete a doctorate in Public Health from an American university, Dr. Kunchok Gyaltsen is invited to give two workshops at the 2015 Art of Dying Conference, to share his mastery of Tibetan medicine, a complex 4,000-year old medical tradition that emphasizes the importance of finding the imbalances that underlie illness. One of the tradition’s main tenets is that death is inevitable, and each day of life brings us closer to it. This approach to death is vastly different than that of a western biomedical system, which gives both doctor and patient the job of “fighting death".... Mindfulness and compassion are key parts of the mental training of the Tibetan physician." Compassion is considered one antidote to the three poisons in Buddhism, which Kunchok defines as ignorance, attachment, and anger. Death is more likely to be accompanied by 'unnecessary suffering' when these poisons are imposed upon the dying process, suggests Kunchok."
"Life is pleasant. Death is peaceful. It's the transition that's troublesome." ~ Isaac Asimov
'Dying is nothing to be afraid of. For a start you can't fail at it, and secondly you get a certificate." ~ Dr. Joanne Duran (posted on Natural Death Care Centre site)
“I'm not afraid of death; I just don't want to be there when it happens.” ~ Woody Allen
Cost of Dying: Discovering a better way for final days (Lisa M. Kreiger, MercuryNews.com 12-30-12). Kreiger recommends taking charge of our lives by putting our wishes in writing, involving entire communities in commitment to planning, encouraging doctors to talk more frankly about choices, paying doctors to help patients decide what's best for them, avoiding costly care that won't prolong or improve life, offering better comfort care to patients in their final days, paying families to help at home instead of using hospitals, and broadening use of comfort care through Medicare and insurance. You can read all stories in the series online:
• My father's death . The cost of dying: It's hard to reject care even as costs soar (San Jose Mercury-News, Feb. 2012)
• Lessons learned (follow-up Feb. 2012)
• How-To Plan (planning for a good death, from advance directive to talking with your family, 4-8-12)
• Relief at the door (Palliative care improves lives and eases the cost of dying, 7-20-12)
• Simple act of feeding poses painful choices (11-2-12)
• At-home caregivers face challenges, sacrifice (12-2-12)
• How hospitals' treatment varies . Some Bay Area hospitals combat death aggressively with expensive treatment (12-9-12)
• Gayla's goodbye. One nurse's end-of-life choice was surprisingly simple — and liberating. (12-13-12)
• Discovering a better way for final days (12-29-12)
• Related stories, including A shift in how we end our lives.. A shift from expensive and not always helpful intensive care to a more low-intensity, high-touch standard of care.
More than once I have given someone a copy of DYING: A Book of Comfort, which they put aside and ignored--until, one night, grief kept them awake, they picked it up, and found it helpful. Readers have told me they found it on the bedside table of a family member who died. I hope it provided comfort. That is the reason for this reading list: so you can find the book that suits a particular situation.
Clicking on a title here will take you to an Amazon.com description of a book and reviews. If you purchase a book after clicking on a link here that takes you to Amazon, my site gets a small referral fee, which helps pay for the Authors Guild server that hosts the site. I encourage shopping at your local independent bookstore, but Amazon has an excellent database, and bookstores don't carry many of these books.
• Albom, Mitch. Tuesdays with Morrie
• Apple, Dennis L. Life After the Death of My Son: What I'm Learning
• Ascher, Barbara Lazear. Landscape Without Gravity (about her brother's death from AIDS).
• Athill, Margaret. Somewhere Towards the End: A Memoir (about her experience with the end of life when, at 91, death is on the horizon)
• Babcock, Elise. When Life Becomes Precious: The Essential Guide for Patients, Loved Ones, and Friends of Those Facing Serious Illnesses
• Bastian, Sue and Mary Metzger. Fresh Widows: A Conversation (the book) and the blog. Great idea! Have mutual friends introduce you to a widow-buddy, a new friend who is going through what you're going through; you help each other re-enter the world as no-longer-part-of-a-couple, knowing without explanation what each of you is going through.
• Beauvoir, Simone de. A Very Easy Death (about the death of her mother)
• Bernstein, Judith R. When The Bough Breaks: Forever After the Death of a Son or Daughter (Paperback)
• Bolen, Jean Shinoda. Close to the Bone: Life-Threatening Illness As a Soul Journey
• Bolton, Iris. My Son...My Son: A Guide to Healing After Death, Loss, or Suicide.
• Bonanno, George A. The Other Side of Sadness: What the New Science of Bereavement Tells Us About Life After Loss . Bonanno finds "little evidence to support the existence of stages of mourning or the corollary that if the stages aren't followed completely, there's cause for alarm. What Bonanno does find is a natural resilience that guides us through the sadness of loss, and grief, rather than distracting us, actually causes the mind to focus; it also elicits the compassion and concern that humans are hard-wired to offer in response to another's suffering." (PW review)
• Boss, Pauline. Ambiguous Loss: Learning to Live with Unresolved Grief (about the sense of "frozen grief" that can occur when a loved one is perceived as physically absent but mentally present (because of desertion, divorce, or abduction, or because missing in action) or physically present but mentally or psychologically absent (because of dementia, mental illness, or other forms of mental or emotional loss or injury).
• Bowler, Kate. Everything Happens for a Reason: And Other Lies I've Loved "The prospect of her own mortality (at 35) forces Kate to realize that she has been tacitly subscribing to the prosperity gospel, living with the conviction that she can control the shape of her life with 'a surge of determination'....Kate is very sick, and no amount of positive thinking will shrink her tumors. What does it mean to die, she wonders, in a society that insists everything happens for a reason?"
• Braestrup, Kate. Here If You Need Me: A True Story
• Brodkey, Harold. This Wild Darkness: The Story of My Death (the story of his confrontation with AIDS)
• Brody, Jane. 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
• Broyard, Anatole. Intoxicated by My Illness (critical illness, in his case from cancer, as a spiritual journey)
• Butler, Katy. The Art of Dying Well: A Practical Guide to a Good End of Life by Katy Butler. (See The surprising comfort of a new book about death by Michael Dirda (WaPo, 3-20-19)
• Butler, Katy. Knocking on Heaven's Door: The Path to a Better Way of Death (as conveyed through a vivid and well-explained account of one hard path to death for both the patient and the family)
• Byock, Ira. Dying Well
• Caine, Lynn. Being a Widow
• Callanan, Maggie, and Patricia Kelley. Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying
• Colby, William A. Unplugged: Reclaiming Our Right to Die in America (making informed end-of-life medical decisions)
• Davis, Deborah L. Empty Cradle, Broken Heart: Surviving the Death of Your Baby
• DeVita, Elizabeth. The Empty Room: Surviving the loss of a brother or sister at any age (partly a memoir of surviving the loss of her brother Teddy to aplastic anemia)
• Didion, Joan. The Year of Magical Thinking
• Edelman, Hope. Motherless Daughters: The Legacy of Loss
• Ehrenreich, Barbara. Natural Causes: An Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves to Live Longer (how we are killing ourselves to live longer, not better).
• Elison, Jennifer and Chris McGonigle. Liberating Losses: When Death Brings Relief gives permission for the relief felt by many primary caregivers (especially spouses) about death after a long illness, or when one is released from a difficult or abusive relationship.
• Evans, Dale and Roy Rogers. Angel Unaware: A Touching Story of Love and Loss
• Fine, Carla. No Time to Say Goodbye: Surviving the Suicide of a Loved One
• Finkbeiner, Ann. After the Death of a Child: Living with Loss through the Years
• Funderburg, Lise. Pig Candy: Taking My Father South, Taking My Father Home (a compelling and beautifully written memoir by a grown daughter—a white-looking mixed-race girl raised in an integrated Philadelphia neighborhood—who gets to know her dying father in a string of pilgrimages to his boyhood hometown in rural Georgia)
• Gawande, Atul. Being Mortal: Medicine and What Matters in the End “A needed call to action, a cautionary tale of what can go wrong, and often does, when a society fails to engage in a sustained discussion about aging and dying.” -- San Francisco Chronicle
• Gilbert, Sandra. Wrongful Death: A Medical Tragedy (about the death of her husband after entering the hospital for routine prostate surgery)
• Goodman, Sandy. Love Never Dies: A Mother's Journey from Loss to Love
• Grollman, Earl A. Living When A Loved One Has Died
• Gunther, John J. Death Be Not Proud (a young son's death from brain cancer)
• Halifax, Joan. Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death
• Hall, Donald The Best Day The Worst Day: Life with Jane Kenyon, an account of the happy 23-year marriage of two poets, her illness (leukemia and chronic clinical depression), and their peaceful creative life and many friends.
• Hammer, Signe. By Her Own Hand: Memoirs of a Suicide's Daughter
• Harris, Mark. Grave Matters: A Journey Through the Modern Funeral Industry to a Natural Way of Burial (why eco-friendly burials make sense)
• Hickman, Martha W. Healing After Loss: Daily Meditations For Working Through Grief
• Hill, Susan. Family (about the death of a premature child)
• James, John W. and Russell Friedman. The Grief Recovery Handbook: The Action Program for Moving Beyond Death, Divorce, and Other Losses including Health, Career, and Faith. By the same authors (with Leslie Mathews): When Children Grieve: For Adults to Help Children Deal with Death, Divorce, Pet Loss, Moving, and Other Losses
• Jamison, Kay Redfield. Nothing Was the Same. The story of a midlife romance and marriage (she manic-depressive, he extremely dyslexic, and the difference between grief, madness, and depression. More about the marriage and dying than about widowhood and grief.
• Johnson, Fenton. Geography of the Heart (about the death of a gay partner)
• Kamenentz, Rodger. Terra Infirma (a searing recollection of his mother's life and her death from cancer, his mother "yo-yoing between smothering affection and a fierce anger")
• Kaplan, Robbie Miller. How to Say It When You Don't Know What to Say: The Right Words for Difficult Times--Illness and Death (less expensive ordered from the author)
• Kessler, David. The Needs of the Dying: A Guide for Bringing Hope, Comfort, and Love to Life's Final Chapter (about the need to be treated as a living human being, the need for hope, the need to express emotions, the need to participate in care, the need for honesty, the need for spirituality, and the need to be free of physical pain).
• Kessler, David. Visions, Trips, and Crowded Rooms: Who and What You See Before You Die
• Kincaid, Jamaica. My Brother (account of her younger brother's death from AIDS)
• Kowalski, Gary. Goodbye, Friend: Healing Wisdom for Anyone Who Has Ever Lost a Pet
• Kuhl, David. What Dying People Want: Practical Wisdom For The End Of Life
• Kushner, Harold S. When Bad Things Happen to Good People
• Latus, Janine. If I Am Missing or Dead: A Sister's Story of Love, Murder, and Liberation
• Levin, Mark R. Rescuing Sprite: A Dog Lover's Story of Joy and Anguish
• Lewis, C.S. A Grief Observed
• Lindquist, Ulla-Carin. Rowing Without Oars: A Memoir of Living and Dying (a brief, grim, and moving memoir of living and dying with ALS, Lou Gehrig's disease--not an easy death).
• Lynn, Joanne and Joan Harrold. Handbook for Mortals: Guidance for People Facing Serious Illness (Center to Improve Care for the Dying). Very practical, covering all the bases.
• McCracken, Anne and Mary Semel. A Broken Heart Still Beats: After Your Child Dies
• McNees, Pat, ed. Dying: A Book of Comfort. Gems of comfort, healing words on loss and grief.
• McWilliams, Peter, Harold H. Bloomfield, and Melba Colgrove. How to Survive the Loss of a Love
• Miller, James, with Susan Cutshall. The Art of Being a Healing Presence: A Guide for Those in Caring Relationships (how to be present in a way that is healing, nourishing, and potentially even transforming)
• Mitchell, Ellen and eight other mothers. Beyond Tears: Living After Losing a Child (powerful book in which nine bereaved mothers share their experiences about what life is like after losing a child in their teens or twenties, including Ellen Mitchell, Carol Barkin, Audrey Cohen, Lorenza Colletti, Barbara Eisenberg, Barbara Goldstein, Madeline Perri Kasden, Phyllis Levine, Ariella Long, Rita Volpe )
• Morrison, Blake. When Did You Last See Your Father?: A Son's Memoir of Love and Loss
• Myers, Edward. When Parents Die: A Guide for Adults
• Nuland, Sherwin B. How We Die: Reflections on Life's Final Chapter (superb explanations of the actual physical process of dying and good on why and when to stop trying to rescue the terminally ill and to let them die peacefully and in less pain and discomfort)
• Oates, Joyce Carol. A Widow's Story. A memoir of sudden widowhood, after 48 years of marriage. Her remarriage a year later elicited strong reactions. Read Should Joyce Carol Oates have revealed her second marriage? (David L. Ulin, Jacket Copy, L.A.Times 5-15-11) and listen to Michael Krasny's interview with Oates, KQED (and read NPR's forum comments). (See also "The Widow's Story," about the death of her husband, Raymond J. Smith, in New Yorker (12-13-10, subscribers only).
• O'Rourke, Meghan. The Long Goodbye: a memoir,m which Alice Gregory reviews for NPR in 'The Long Goodbye': A Syllabus For Modern Mourning.
• Picardie, Ruth. Before I Say Goodbye: Recollections and Observations from One Woman's Final Year
• Rando, Theresa A. How To Go On Living When Someone You Love Dies
• Rappaport, Nancy. In Her Wake: A Child Psychiatrist Explores the Mystery of Her Mother's Suicide. Haunted by the 1963 death of her mother, a Boston socialite, from an overdose when Rappaport was only four (the youngest of six children), the author tries to reconstruct what happened. As her brother asked: Didn't their mother know that she would leave all these shattered children wondering if it was their fault?
• Redfern, Suzanne and Susan K. Gilbert. The Grieving Garden: Living with the Death of a Child. Redfern and Gilbert reflect on their own experiences and tell the stories of 22 other parents whose children died at various ages and from various causes, from disease and accidents to suicide and terrorism. Organized in sections that mirror the stages of grief, from immediate reactions, seeking support, effects on family life and relationships, to integrating the loss into one's life and maintaining connections with a loved one.
• Riggs, Nina. The Bright Hour: A Memoir of Living and Dying. A much-loved, three-hankie memoir by a young woman with a loving husband and two children, who discovers she has metastatic breast cancer and has to say goodbye to all that.
• Rinpoche, Sogyal. The Tibetan Book of Living and Dying
• Romm, Robin. The Mercy Papers: A Memoir of Three Weeks (a young woman's raw unflinching account of losing her mother to cancer--with no sugar coating, as one reviewer puts it)
• Rosenblatt, Roger. Making Toast by Roger Rosenblatt, which E.L. Doctorow describes thus: "A painfully beautiful memoir telling how grandparents are made over into parents, how people die out of order, how time goes backwards. Written with such restraint as to be both heartbreaking and instructive."
• Sittser, Jerry L. A Grace Disguised: How the Soul Grows through Loss (about the transformative grace that can come even in the face of catastrophic loss)
• Staudacher, Carol. A Time to Grieve: Meditations for Healing After the Death of a Loved One
• Taylor, Nick. A Necessary End (about death of parents)
• Vincent, Eleanor. Swimming with Maya: A Mother's Story (how the daughter's fall from a horse ended in organ donations--transforming a mother's grief)
• Viorst, Judith. Necessary Losses: The Loves, Illusions, Dependencies, and Impossible Expectations That All of Us Have to Give Up in Order to Grow
• Waxman, Robert and Linda. Losing Jonathan (losing a beloved child to drugs)
• Westberg, Granger E. Good Grief: A Constructive Approach to the Problem of Loss
• Whiston-Donaldson, Anna. Rare Bird: A memoir of loss and love. "I wish I had nothing to say on the matter of loss, but I do. Because one day I encouraged my two kids to go out and play in the rain, and only one came home…."
• Wiesel, Elie. Night (powerful account of surviving the nightmare world of the Nazi death camps)
• Williams, Marjorie. The Woman at the Washington Zoo: Writings on Politics, Family, and Fate (the last third is about her losing battle with cancer, saying goodbye to her family)
Difficult endings. Suicide, homicide, physician-assisted suicide, violence (including domestic violence), sudden death (from accidents and otherwise), dementia and other forms of lingering illness -- complex and difficult endings may bring complicated losses and complicated grief. You'll find some resources to deal with such issues here.
Dying With Dignity and the Final Word on Her Life (Michael Winerip, Our Generation, NY Times, 8-5-13). Those closest to Jane Lotter recalled her as spunky, self-aware, and wise beyond her 60 years. So when she told her family that she planned to write her own obituary, they weren't surprised.
Endings (Francis Slakey, Huff Post, 6-24-13) "The end will come on his terms, at a location of his choice, with a person he loves....to seize control at our most frail of moments -- that is what it is to live."
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)
Failing a patient 3 times: A case of moral medical malpractice (physician Monica Williams-Murphy, Kevin MD, 8-24-13)
The Final Journey (hospice stories about death and dying, Hospice.net)
A final round of therapy, Fulfilling the Needs of 2 (Henry Grunebaum, MD, NY Times 10-5-09) A dying patient has lessons for his therapist.
Finding Joy in My Father’s Death (Ann Patchett, Opinionator, NY Times, 2-27-15) A prolonged dying, from Parkinson's and/or progressive supranuclear palsy (PSP). "Either way he was frozen solid, his muscles boiling beneath the surface of his skin. He liked to hold hands in the last months of his life, and holding his hand was like holding a linen sack full of bumblebees." Death came finally as relief.
The First Few Minutes After Death (Sam Barrett, PopSci, 10-30-08). A three-year study to explore the nature of death and consciousness, sponsored by the Nour Foundation as part of the Human Consciousness Project
For me to have a good day, somebody must die (Del Stone, Open Salon, on writing about death for a newspaper website and feeling guilty about his own gallows humor)
A Gentle Death: Five Months with Hospice (Barbara O'Neil Ross, Hospice Foundation of America)
Grave Matters: A history of death and mourning (BackStory with the American History Guys, NPR) In this special Memorial Day episode, the Guys and their guests explore Americans’ changing attitudes about death: historian Drew Gilpin Faust talks about how the Civil War altered the American way of dying; writer Kate Sweeney explores the 20th Century shift toward private, restrained mourning; and our own Ed Ayers tours Richmond’s Hollywood Cemetery — and discovers his own gravesite.
Handbook for Mortals (full text online of consumer guide to end-of-life care by Joanne Lynn and Joan Harrold)
Helping Patients Face Death, She Fought to Live (Anemona Hartocollis, NY Times, 4-3-10) Dr. Desiree Pardi, a leading practitioner in palliative care, counseled patients about accepting death, until cancer spread in her body, and she fought to live.
Helping yourself live when you are dying (Alan D. Wolfelt, Hospicenet.org)
The Honor Page (Tom Golden's website, where in the past those who were bereaved could honor Children's Deaths, Parents' Deaths, Loved Ones' Deaths, or post a link to a memorial)
Hospice care and palliative care (care to comfort, not to cure). What you should know about end-of-life care.
‘How Many of You Expect to Die?’ Jane Gross, The New Old Age (NY Times blog), 7-8-08. Custodial care, "can easily cost $100,000 a year and is not reimbursed by Medicare," a program created in 1965 when hardly anyone lived so long as people are living today. Gross quotes: “We’re doing this so badly because we’ve never been here before,” Dr. Lynn said. “But the care system we’ve got didn’t come down from the mountain. We made it up, and we can make it up better.”
How to Die by Joe Klein ( Time Magazine, June 11, 2012). Inside the story is called The Long Goodbye. Klein writes about the dramatic improvement in his parents' care when they were moved to a facility with no incentives for unnecessary interventions. "For five months, I was my parents' death panel. And where the costly chaos of Medicare failed, a team of salaried doctors and nurses offered a better way." Here's must-see/hear Time video of Joe Klein talking about his cover story and lessons learned -- how his parents' deaths taught him about the flaws in the fee-for-service health care system. (Note to self: Research the Geisinger healthcare delivery system.)
Incapacitated, Alone and Treated to Death (Joseph Sacco, NY Times, 10-6-08)
In death, a promise for the future. As her world diminished, Elizabeth Uyehara signed her body over to researchers to help unravel the mystery of Lou Gehrig's disease. (Thomas Curwen, Los Angeles Times, 8-28-10, on the course of Uyehara's ALS and on what happens when organs are donated for science)
Just One Last Swirl Around the Bowl (Dan Barry deals with the last days of his daughter's pet fish, Modern Love, NYTimes, 4-3-09)
Keeping a Promise When a Life Is Near Its End (Ellen D. Feld, MD, NY Times 11-10-08)
Knocking on Heaven's Door: The Path to a Better Way of Death by Katy Butler. The following essay is adapted from Ms. Butler's book: The Ultimate End-of-Life Plan by Katy Butler (Wall Street Journal, which published this story as A Full Life to the End, 9-7-13).
Kubler-Ross, Elisabeth, "On Death and Dying" (an interview conducted by Daniel Redwood in 1995, posted on Healthy.net)
The Last Goodnights (ABC News story about, and long excerpt from, John West's book about the assisted suicide of his parents)
Last Rites (Candice Carnes, Pulse, 7-11-14) Cleaning up after CPR fails to revive an 86-year-old with heart failure.
Last Words (famous last words, famous epitaphs, illuminations, famous farewells, and stories of last stands)
• Last Writes (Hilton Koppe, Pulse, 4-17-15) Frank and amusing account by a doctor in New South Wales of how he feels when he sees the body of a feisty and beloved patient, who had lived far longer than expected.
Let's talk about dying (Lillian B. Rubin, Salon.com, 12-27-12). "At 88 and ailing, I refuse to live at any cost. I only hope that when the time comes, I'll have the courage to act. ... At 88-going-on-89 and not in great health, what’s cowardly about my deciding to turn out the lights before putting my family through the same pain they’ve already lived through with their father and grandfather? What’s courageous about spending our children’s inheritance just so we can live one more month, one more year? Is it courage or cowardice to insist on staying alive at enormous social cost – 27.4 percent of the Medicare budget spent in the last year of life – while so many children in our nation go hungry and without medical care?"
Life After Life: A Novel by Jill McCorkle. Listen to Melissa Block interview her about the book on All Things Considered (NPR, 3-22-13)
A Life Worth Ending (Michael Wolff, NY Times Magazine, 5-20-12). The era of medical miracles has created a new phase of aging, as far from living as it is from dying. A son’s plea to let his mother go. "One of the most beautifully done, searing articles I've ever read about death in the age of medical intrusion," commented Robin Henig, and I agree.
Living Consciously, Dying Gracefully - A Journey with Cancer and Beyond by Nancy Manahan and Becky Bohan (how Diane Manahan chose to live life fully at the end and die at home)
Love & Rockets: A daughter tries to reconcile her mother’s last wish: to have her ashes shot up in the sky (Janna Bialek, Washington Post magazine, 6-18-15)
Making Rounds with Oscar: The Extraordinary Gift of an Ordinary Cat by David Dosa (about a cat who senses death and stays to comfort the dying, but also about Alzheimer's and geriatric care and nursing homes and being there, at the end of life)
Months to Live. A New York Times series, examining the promises and challenges of extending, or ending, the lives of very ill patients. Includes Weighing Medical Costs of End-of-Life Care by Reed Abelson, 12-22-09; Fellow Inmates Ease Pain of Dying in Jail by John Leland, 10-17-09; Sisters Face Death With Dignity and Reverence by Jane Gross, 7-8-09 (a group of convent sisters rely on social networks rather than aggressive medical care);Fighting for a Last Chance at Life, by Amy Harmon, 5-16-09 (A family’s campaign for access to an unproven drug (Iplex, for ALS, or Lou Gehrig's disease) highlights the challenges terminally ill patients face in the search for treatment; and At the End, Offering Not a Cure but Comfort (Anemona Hartocollis, 8-20-09 on what palliative care specialists do during patients' last months).
My friend's dying tested my atheism (read or listen to Cerise Morris, Globe & Mail, Facts & Arguments, 9-13-10)
My Mother Is Not a Bird (Julienne Grey, The End, NY Times, 2-18-15, about the final two years of her mother's--Linda Greenspan Regan's--life.) "Her last two years were a slow descent, each bit removing some part of what my mom and I could do, of what it meant for her to be my mom, and what it meant for me to be her daughter."
Nora Ephron’s Final Act (Jacob Bernstein, NY Times Magazine, 3-6-13). Her son's tribute to her final years, when she kept secret her illness (myelodysplastic syndrome, an aggressive blood disorder that destroys the body’s ability to make healthy blood cells and ward off infections), so she could keep writing plays and movies that stood a chance of production. Her last last completed work, the play "Lucky Guy," is about Mike McAlary, a journalist whose career had taken a nosedive, but who kept striving to do his best work even as he was dying.
Note to My Patient (Sarah Stumbar, Pulse: Voices from the Heart of Medicine). A doctor's observations and feelings about the last stages of the life of a clearly terminal patient who wants everything done to save him--until the process grows more painful and he grows weaker.
Physician-Assisted Death Is Illegal In Most States, So My Patient Made Another Choice (David Muller, Health Affairs, ) A patient in his nineties and in decline chooses the only legal way in most of the United States to hasten his death: He stops eating and drinking. His doctor wonders whether that is just or compassionate.
The Quality of Death: Ranking end-of-life care across the world. According to this summary of the The Economist Intelligent Unit's white paper, the UK (where hospice originated) has led the way in developing its hospice care network and statutory involvement in end-of-life care. Indicators for the ranking include public awareness, the availability of training in palliative care, access to pain killers, and doctor- patient transparency. Canada and the U.S. tied for 9th place, after UK, Australia, New Zealand,Ireland, Belgium, Austria, Netherlands, and Germany. "Death and dying are stigmatised in some cultures" (including China's). Go to the Quality of Death Index site for the full report on this first-ever global study on the quality of death across 40 countries, commissioned by the Lien Foundation.
Quiet deaths don't come easy (Melissa Healy, Los Angeles Times, 2-5-13) A study finds that Medicare patients near death are increasingly choosing hospice or palliative care over heroic measures in their last days — but that many go through futile hospitalizations and treatments first.
Roger Ebert Became A Voice For All Those Who Face Cancer Bravely (Matthew Herper, Forbes). The beloved movie critic first had thyroid cancer, then cancer of the salivary glands, and finally complications from surgery to remove those glands. See also Roger Ebert: A Health History Of The Iconic Movie Critic (HuffPost, 10-11-13). and this lovely profile of his life without a voice: Roger Ebert: The Essential Man (Chris Jones, Esquire, 2-16-10).
Scott Simon On Sharing His Mother's Final Moments On Twitter (NPR Staff, 7-30-13)
‘See you on the other side’ (Sara Morrison, Columbia Journalism Review, 5-1-13). Meet Jessica Lum, a terminally ill 25-year-old who chose to spend what little time she had practicing journalism
Stories of Hope, including Stories of organ recipients . You can also click on Donor Stories and Stories from Those Waiting. (James Redford Institute for Transplant Awareness)
Suddenly, They’re All Gone (Carol Mithers, The New Old Age, NY Times, 3-22-13) "While you’re caring for the old, you can’t believe what you’re called on to do and where you find yourself, can’t believe that your time with them will ever end. Then one day, it just does." The caregiving is over, but instead of feeling relieved, I feel worse.
Telling Stories (Rachel Hillestad, Huff Post 2-17-13). In which the author says goodbye to her dying grandmother by telling the stories the grandmother used to tell her.
The Ultimate Homework Assignment: Why We Need to Talk Openly About Death (Wendy R. Uhlman, My Turn, Newsweek, in Daily Beast, 10-2-08). We are often unprepared for the physical and logistical consequences of dying, but it doesn't have to be that way.
Waiting for death, alone and unafraid (Thomas Curwen, Los Angeles times, 2-28-09). Story about Edwin Shneidman, 90, who has written 20 books about death and says dying is easy. Living takes effort)
John West: "The Last Good Nights" (Diane Rehm radio show, 2-4-09). The author of The Last Goodnights: Assisting My Parents with Their Suicides tells why, and how, he assisted his parents with their suicides. He offers a first-hand account of the decision no child wants to face and explains why he followed through on his parent's desire to choose death with dignity.
When the System Fails (Sondra S. Crosby, The End, NY Times, 2-25-15) "The current landscape in medicine is that physicians are burdened with ever increasing workloads that make devoting the required time for complex patients very difficult....toward the end of Mohammed’s life when there was little communication among different silos of caregivers, and poor comprehension of a death plan for Mohammed and his family."
When the Time Comes: Families with Aging Parents Share Their Struggles and Solutions by Paula Span. What will you do when you get the call that a loved one has had a heart attack or a stroke? Or when you realize that a family member is too frail to live alone, but too healthy for a nursing home?
There is a "brain death" interpretation of death (when the brain irreversibly stops functioning) and there is a "beating heart" definition. Formerly, the medical profession used the beating heart standard; under the Uniform Declaration of Death Act, they moved to a broader standard that includes "brain death" (see below). But there are legal and there are religious definitions of death and, as health journalist Norman Bauman has said, "There seems to be racial and religious favoritism here. Orthodox Jews in New York and New Jersey have laws that let them choose the heart death standard, while black people elsewhere with equally sincere religious beliefs have the brain death standard imposed on them."
• What is the Uniform Declaration of Death Act (UDDA)? (FindLaw) The UDDA offers two definitions for when an individual may legally be declared dead:
1. Irreversible cessation of circulatory and respiratory functions;
2. Irreversible cessation of all functions of the entire brain, including the brain stem.
• What Does It Mean to Die? (Rachel Aviv, New Yorker, 2-5-18) When Jahi McMath, who had not wanted the tonsil surgery, was declared brain-dead by the hospital, her family disagreed and insisted on keeping her alive. Her case challenges the very nature of existence.
• Brain death, cardiac death, and the dead donor rule (Robert M. Sade, J S C Med Assoc. Author manuscript; available in PMC 2012 Jun 12). Two thirds of people incorrectly believe that someone who is brain dead is not legally dead, and more than half believe that a comatose patient is brain dead. Such misunderstandings and confusions make it easy to comprehend why there is still a good deal of controversy about the relationship between determination of death and organ donation." The "introduction of cyclosporine in 1980...in combination with existing less effective immunosuppressive drugs, markedly increased survival rates and led to rapid expansion of the organ transplantation field. This, in turn, generated demand for increasing numbers of organs, especially from dead individuals, producing a paradox: “the need for both a living body and a dead donor.” The Dead Donor Rule "DDR is neither a law nor a regulation — it is a description of an ethical norm: an organ donor must be dead before vital organs are removed. The UDDA in combination with the DDR assures patients, families, physicians, and other health professionals that a patient who is brain dead is in fact dead, making removal of organs for life-saving transplantation legally and ethically acceptable." A discussion from the viewpoint of organ donations.
• Public Education and Misinformation on Brain Death in Mainstream Media (Thaddeus Mason Pope, Medical Futility blog on end-of-life law and policy, 6-22-16) The results of a study in Clinical Transplantation should come as no surprise. Mainstream media provides poor education to the public on brain death. The authors argue that because public understanding of brain death impacts organ and tissue donation, it is important for physicians, organ procurement organizations, and transplant coordinators to improve public education on this topic.
• Jahi McMath, Ariel Sharon, and the Valley of Death (Andy Crouch, Time, 1-20-14) Heroic medical procedures can leave us in a limbo between life and accepting what's beyond. Today, more and more of us face "the uncanny valley of the shadow of death. It's the domain of those, like Jahi and former Israeli Prime Minister Ariel Sharon (since a stroke in 2006), who suffer grievous injury and are kept on this side of life by elaborate and increasingly heroic medical procedures....It calls forth mourning but also forbids it....But many families choose the uncanny valley without understanding just how hard the journey will be. Raymond Barfield, director of the pediatric palliative-care program at Duke, sees every day what researchers have documented: religious families are consistently the ones most likely to insist on heroic measures and most likely to resist doctors' assessments of viability. It is the people with a "strong faith" who also want the most dramatic technological interventions....The real hope for all of us is not that there is a machine that will save us but that even at the very end there will be someone who loves us, closer than our own breath. From what I've seen of those closest to Jahi McMath, that hope and faith is with her, stronger than any shadow."
• Medicine Does Not Know What 'Dead' Is (Andy Crouch, Christianity Today, 1-20-14) Why doctors should not have the last word on life and death. An interview with Duke physician Raymond Barfield. "We didn't really start thinking of brain death as death until doctors at Harvard discovered that if we were to define it that way we'd be able to harvest organs for transplantation. Advances in organ transplantation is what first really pushed medicine to start coming up with alternate definitions of death." Why he would have no trouble sending home (with the proper equipment) a patient for whom further hospital treatment would be futile.
• Why brain death is considered death and why there should be no confusion (Christopher M. Burkle et al., Neurology, 10-14-14. doi: 10.1212/WNL.0000000000000883) "The tragic case of a 13-year-old Oakland, California, child (Jahi McMath) who was declared dead on December 12, 2013, following complications of a tonsillectomy, adenoidectomy, and redundant sinus tissue removal, recently pitted family members, lawyers, and the hospital against each other as they struggled to resolve continuing support." (The family followed their religious belief that a person was dead if and only if their heart stopped beating. They wanted to keep her heart beating and bring her to another facility.) "Many patients, family members, and the public at large remain confused about the differences between brain death (death) and other neurologic disorders such as coma or persistent vegetative state."
• The Determination of Death (PDF) New York state law allows Orthodox Jews who believe in the beating heart standard of death to follow their beliefs.
• Brain Death: Legal Obligations and the Courts (Christopher M. Burkle and Thaddeus M. Pope, Medscape Multispecialty, Semin Neurol. 2015;35(2):174-179) "In 1991, New Jersey enacted the New Jersey Declaration of Death Act. As in every other state, this statute provides that an individual who has "sustained irreversible cessation of all functions of the entire brain, including the brain stem, shall be declared dead." However, unlike other states, the New Jersey statute allows for a categorical exception for a religious objection to brain death. ...Summarizing, the New Jersey Declaration of Death Act provides that "the death of an individual shall not be declared upon the basis of neurological criteria when … such a declaration would violate the personal religious beliefs of the individual." Although the statute does not define what qualifies as a legitimate religious belief, it seems that upon the assertion of any plausible religious claim, death shall be declared "solely upon the basis of cardio-respiratory criteria." "
• Why a family fights over their ‘healthy and beautiful’ daughter, legally dead since 2013 (Yanan Wang, WaPo, 3-22-16) "Even though the law says Jahi is dead, many religions define life as breathing lungs and a beating heart, which Jahi has when she is connected to a respirator and a feeding tube. With this in mind, her family has fought to have her death certificate overturned. After Children’s Hospital Oakland refused to keep Jahi on life support, the family moved to New Jersey, where a state law allows for exemptions on religious grounds from neurological-death declarations. All the while, they have harbored hope that their daughter — brain-dead for two years, “alive” for 15 — will one day miraculously awaken. ... Jahi’s family filed a medical-malpractice lawsuit against the hospital and her surgeon, Frederick Rosen, last March. The complaint alleges that Rosen failed to note an “anatomical anomaly” in Jahi that put her at serious risk of the excessive bleeding that led to her brain death. This suit’s success also hinges on whether Jahi is considered alive or dead by the Alameda County Superior Court. California’s malpractice law has a $250,000 cap on monetary compensation in cases where a patient died from surgery and does not require funds for continued care. But if Jahi is regarded as alive, and thus needing financial assistance to stay on life support, the award could be much greater if her family prevails."
• Controversies in the Determination of Death: A White Paper by the President's Council on Bioethics (2008). Available at https://bioethicsarchive.georgetown.edu/pcbe/reports/death/
• Azamgarh Journal; Back to Life in India, Without Reincarnation (NY Times, 10-24-2000) " Lal Bihari, founder of the Association of Dead People, first learned he was deceased when he applied for a bank loan in 1975. Proof of identity was required for the transaction. But when Mr. Bihari came here to Azamgarh, the district capital, he was told quite peremptorily that he could no longer be who he said he was. Official records now listed him as dead, something that had allowed his uncle to inherit Mr. Bihari's share of the family's ancestral farmland." It took a 19-year legal battle to be "legally recognized as alive." "It is still too early to make an accurate estimate of how many of the legally dead are biologically alive, but the known cases most often involve intra-family fraud, and the reason for the infighting is a severe shortage of land."
• Texas Supreme Court Upholds Emergency Resuscitation Over Parental Objection (National Right to Life archives, 2003) An interesting case in terms of the implications of providing life-sustaining treatment for a fragile infant whose parents do not want such treatment provided--who is responsible if the hospital provides it anyway, and the child is born disabled as a result?
A lot of court cases come down to money. Yes, sometimes the hospital is operating on the profit motive, especially when it is pushing services that won't make much difference to the patient, but will to the hospital. But even with safety net hospitals that provide care to anyone regardless of ability to pay, as Elizabeth Leary has pointed out, "How much medically futile care should you provide when other patients need those services? Medically futile care is typically defined as not only brain death, but any care delivered which will not fundamentally change or improve the patient's outcome. Nevertheless, we still do it in many cases because the family is in shock and in mourning and they insist that 'everything be done' even if 'everything' has no significant impact on the patient's health.
"The problem is that as much as we have tried to provide unlimited resources with health care in this country, resources are still limited. We only have so many hospital beds and that bed will not be available to another patient whose health outcome could be improved with treatment. Even though many more patients now have Medicaid coverage under the ACA, they still end up in the ER because they have never had health care coverage before and they are not yet stable. This is where medically futile care can become detrimental to other low income Medicaid patients who need services."
• Old Dog Needs $6,000 Surgery. What Do You Do? (Roz Warren, My Story, Booming, NY Times, 3-26-13).
• New York Burial Plots Will Now Allow Four-Legged Companions (Sarah Maslin Nir, Regional NY section, NY Times, 10-6-16) "The new law permits only cremated remains of pets to be buried. Religious cemeteries are exempt, and cemeteries are not obligated to accept animals....Indeed, the new law codifies something that has long occurred on the sly — slipping a pet’s ashes into a coffin — said Robert Ruggiero, executive director of the Metropolitan Funeral Directors Association."
• Pet Trust Primer (ASPCA). See also Pet Trust laws (by state) (ASPCA)
• How to Set a Price on the Life of a Beloved Pet? (Tess Vigeland, Your Money blog, NY Times, 3-25-13). Costs and choices mount for pets' end-of-life care. Includes Q&A About Pet Health Care
• Making End-of-Life Choices for Our Pets (Richard Palmquist, Huffington Post, 12-5-11)
• Making End-of-Life Decisions for Pets (Tara Parker-Pope, Well, NY Times, 7-26-10)
• End-of-Life Care FAQ: A guide to caring for your pet during his final days (ASPCA)
• Euthanasia... What To Expect (Pet MD)
• Living with the loss of your cat (Rita Bruche, Cats of Australia)
• Euthanasia: What To Expect when the time comes (T.J. Dunn, Jr., Cats of Australia)
Let me know of other online material that is helpful.
• Crossing Over: How Science Is Redefining Life and Death (Robin Marantz Henig, National Geographic, April 2016) Can death be reversible? And what are we learning about the gray zone between here and the other side? See also the sidebars: What It’s Like to Escape From the Brink of Death and When Death Doesn't Mean Goodbye.
• AWARE study (AWAreness during REsuscitation) results (International Association for Near Death Studies, Inc., or IANDS). Initial results published from a multi-hospital clinical study of the brain and consciousness during cardiac arrest, including testing the validity of perceptions during the out-of-body part of near-death experiences (NDEs). Dr. Sam Parnia is the principal investigator. The initial results, from the first four years of the study, were published December 2015.
• Erasing Death: The Science That Is Rewriting the Boundaries Between Life and Death by Sam Parnia. Death is not a moment in time. Death, rather, is a process—a process that can be interrupted well after it has begun. Innovative techniques have proven to be effective in revitalizing both the body and mind, but they are only employed in approximately half of the hospitals throughout the United States and Europe.
• Consciousness Beyond Life: The Science of the Near-Death Experience by Pim van Lommel.
• How Death Strikes Around the U.S. 'A grim tally of “years of life lost” shows that substance abuse, suicides and diabetes drove a rise in premature deaths in nearly half the country, according to researchers who mapped variations in death rates among people 20 to 55.' (Betsy McKay, Wall Street Journal, 4-10-18). If you don't subscribe, see The State of US Health, 1990-2016: Burden of Diseases, Injuries, and Risk Factors Among States (Summary of JAMA original investigation) "There are wide differences in the burden of disease at the state level. Specific diseases and risk factors, such as drug use disorders, high BMI, poor diet, high fasting plasma glucose level, and alcohol use disorders are increasing and warrant increased attention."
• Getting the numbers right (on Writers and Editors site)
• Deaths and Mortality (Centers for Disease Control and Prevention, or CDC)
• CDC WONDER (online databases that use a rich ad-hoc query system for the analysis of public health data--including data on mortality). Under "Detailed Mortality," you can tell "search" to give you "data broken down by state, then gender, then age, then cause, etc. You can check a box to export the data at the bottom of the search page." Caution, says one journalist: Deaths are counted more than once.
• Mortality Data (National Vital Statistics System, CDC)
• 35 Years of American Death (Ella Koeze, FiveThirtyEight, 4-2-18) Infographic map showing "Mortality rates for leading causes of death in every U.S. county from 1980 to 2014."
• Odds of Dying ( National Safety Council). See especially What are the odds of dying from...? (NSC chart)
• Mortality Risk: Odds of death in the United States by selected cause of injury (Insurance Information Institute). See chart below that: U.S. Death Rates from Major Causes/Health Risks.
• The Odds of Dying (Live Science). "According to the National Center for Health Statistics, the leading causes of death in the United States are, in this order, heart disease, cancer, stroke, chronic lower respiratory diseases, and "accidental injury," a broad category that includes a lot of stuff that just happens."
• Heart Disease as the Number One Cause of Death Among the Elderly (James S. Goodwin, MD, Perspective, JAMA Internal Medicine, March 2014) Excellent story suggesting that CDC guidelines for reporting deaths as data may lead to overreporting of heart disease as a cause of death, especially when the cause of death is unclear and no doctor was nearby. See the CDC instructions for completing the 'cause-of-death sections of the death certificate and
(the same in more detail) Physicians' Handbook on Medical Certification of Death. There is some latitude for physicians being influenced by what's being talked about and pushed in medical circles, which as Norm Bauman speculates, is why "as Ivan Oransky would say, prostate cancer testing increases prostate cancer deaths."
• Diabetes Contribution to Deaths Underestimated; Third Leading Cause (Marlene Busko, Medscape, 1-31-17) A new study based on recent national surveys estimates that diabetes accounts for many more deaths in the United States than are being reported on death certificates — and that diabetes is actually the third leading cause of death. "Responsibility for approximately 12% of deaths would make diabetes the third leading cause of death in the United States in 2010, after diseases of the heart and malignant neoplasms and ahead of chronic lower respiratory diseases and cerebrovascular diseases," Drs Stokes and Preston write.
• Hospice statistics (NHPCO). See especially Facts & Figures: Hospice Care in America (PDF. 2014 edition)
• Advanced Illness Care: Key Statistics (The Coalition to Transform Advanced Care, C-TAC, 2012 -- dedicated to transforming advanced illness care by empowering consumers, changing the health care delivery system, improving public and private policies and enhancing provider capacity)
• Is Care for the Dying Improving in the United States? ( Joan M Teno, Vicki A Freedman, Judith D Kasper, Pedro Gozalo, and Vincent Mor, J Palliat Med. 2015 Aug 1;18(8):662-6.) Summary on Metajournal.com. "Striking changes occurred in health care in the United States between 2000 and 2013, including growth of hospice and hospital-based palliative care teams, and changes in Medicare payment policies." But there are substantial unmet needs.
• Change in End-of-Life Care for Medicare Beneficiaries: Site of Death, Place of Care, and Health Care Transitions in 2000, 2005, and 2009 (Teno, J.M., Gozalo, P.L, J.P. Bynum, et al. JAMA. 2013; 309(5):470-7) Thanks to Ellen Rand for those leads.
• Palliative care statistics (Center to Advance Palliative Care, or CAPC). Statistics for Providers, for Payers, and for Policymakers.
• Long-Term Care Services in the United States: 2013 Overview (CDC)
(Thanks to members of the Association of Health Care Journalists for guidance here, and particularly to Ellen Rand, author of Last Comforts: Notes from the Forefront of Late-Life Care http://lastcomforts.com/ (to be published March 2013)
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This is a wonderful gift book for families experiencing a serious illness or a death in the family. Often the serious illness doesn't end in death, but elicits anxiety, sorrow, and thoughts about the possibility of death.
"For those who face the lonely reality of death, this book provides understanding and much-needed solace."
Claire Berman, author of Caring for Yourself While Caring for Your Aging Parents