End-of-life decision making
Enjoying the golden years
Autism, Asperger's syndrome, Savant Syndrome
Depression, bipolar disorder (manic-depressive illness), schizophrenia, and other forms of mental illness
Including suicide and assisted dying
Plus memorials and requiems
Plus cemeteries, coffins, headstones, memorials, etc.
(stories about specific diseases, conditions, syndromes)
Narrative medicine (or medical narrative)
Memoirs of illness, crisis, disability, differentness, and survival
Assisted living, nursing homes, cohousing, or living in place (with or without caregivers)
Making best use of the system
What's wrong with American health care?
Understanding the issues reform must address
Having a 'good death'
• 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 Doora is 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."
• 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
• 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.
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• 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.
• 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
~Cost of Dying: planning for a good death, from advance directive to talking with your family
~Relief at the door: Palliative care improves lives and eases the cost of dying
~Simple act of feeding poses painful choices
~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
~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."
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• 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."
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• 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.
• 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)
• 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."
• A dying patient is not a battlefield
(Theresa Brown, CNN Opinion, 8-31-10)
• 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."
• 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.
• 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)
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• How Doctors Die
(Ken Murray, The Health Care Blog)
• Informed Refusal
(Richard Gunderman, The Health Care Blog)
• 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.
• 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."
• 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.
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.
• Your Medicare Coverage: Preventive visit & yearly wellness exams
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• How to Say Good-bye When Someone You Love Is Dying
(Paula Spencer Scott, Caring.com). Excellent advice.
• 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.
• 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.
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including death with dignity
• 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.
• 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
• 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.
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• 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.
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."
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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
• At-home caregivers face challenges, sacrifice
• 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
• 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.
. Celebrating Life Before Death in Short (and Shorter) Films. (Life Before Death site)
. 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.
(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
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)
(Candice Carnes, Pulse, 7-11-14) Cleaning up after CPR fails to revive an 86-year-old with heart failure.
(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.
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.
(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?
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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.
• 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.
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• 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."
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• Old Dog Needs $6,000 Surgery. What Do You Do?
(Roz Warren, My Story, Booming, NY Times, 3-26-13).
• Pet Trust Primer
(ASPCA). See also Pet Trust laws (by state)
• 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
• Euthanasia... What To Expect
• 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.
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• 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.
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(events, not venues)
• 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.
• 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
• 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
• 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)
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• 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)
• Odds of Dying
( National Safety Council). See especially What are the odds of dying from...?
• 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."
• 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
(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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STORE OWNERS AND BOOKSELLERS:
Get in touch if you want to stock this title. E-mail pat at patmcnees dot com (in the usual format).
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
"Death Rate Holds Steady at 100%" ~ The Onion
We shall not cease from exploration,
and the end of all our exploring
will be to arrive where we started
and know the place
for the first time.
~ T. S. Eliot, The Waste Land
"I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity." ~ Gilda Radner
'The fear of death follows from the fear of life. A man who lives fully is prepared to die at any time.'~ Mark Twain
by Philip Larkin (about the dread of not existing anymore)