Complex and 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 losses here. Alternatives include assisted dying ("aid in dying") and VSED (voluntarily stopping eating and drinking
• End-of-life decision-making
• End-of-life decision-making in the critical care unit
• Death with Dignity
• Assisted dying and VSED (voluntarily stopping eating and drinking)
• Aid in dying (assisted death)
• "Right to Try" legislation
• Euthanasia (physician-assisted dying)
• Suicide and suicide prevention
• Books and stories about suicide and surviving suicide
• Helpful organizations and Web resources
• Useful links, general
• How to tell children their parent is dying
• Grieving the loss of a child
• A reading list
• American Foundation for Suicide Prevention (AFSP). Walk to save lives: Out of the Darkness Walks
• Compassionate Friends (national self-help organization for help grieving the loss of a child of any age). Resources include a Chapter Locator and online brochures on topics ranging from Understanding Grief, Sudden Death, Surviving Your Child's Suicide or Homicide, The Death of an Adult Child, Death of a Special-Needs Child, Adults Grieving the Death of a Sibling, Suggestions for Various Professionals Dealing with Someone's Loss of a Child. Compassionate Friends' credo: The Compassionate Friends credo: "We reach out to each other in love to share the pain as well as the joy, share the anger as well as the peace, share the faith as well as the doubts, and help each other to grieve as well as to grow. We need not walk alone. We are The Compassionate Friends." Here Linton Weeks describes the healing that goes on at a Compassionate Friends conference. He writes: "No matter how your child dies, there is an undeniable sense of failure among bereaved parents. Jan and I are haunted by Stone's and Holt's violent, senseless deaths, and all of the wrongs that can never be righted. Including the biggest of them all — we could not save our sons from death. We should have been the ones who died first, not our precious boys. We carry that guilt in our already shattered hearts, and we relearn every morning when we wake up that the loss of our children is something we will never get over. Or past. Or through." The Compassionate Friends conference brings together parents isolated from their friends, family, work by pain and inexperience with such loss.
• ERGO bookstore (Euthanasia Research & Guidance Organization). For the rights of the terminal or hopelessly physically ill, competent adult. Sells editions of Final Exit, and specialized items such as Derek Humphrey's How to Make Your Own Inert Gas Hood Kit
• Growth House provides access to over 4,000 pages of education materials about end-of-life care, palliative medicine, and hospice care, including the full text of several books.
• HALOS, a support group for families and friends who have lost a loved one to homicide (not a therapy group and not associated with any religious group)
• The Hemlock Society, founded as a right-to-die organization founded in Santa Monica, California, by Derek Humphrey, merged with and changed its name to Compassion & Choices in 2003, helping with end-of-life consultation.
• Homicide Outreach Project Empowering Survivors (HOPES program), William Wendt Center for Loss and Healing, Washington DC
• Mothers in Charge Stop the Violence! Prevention, Education, and Intervention
• National Child Traumatic Stress Network (NCTST)
• National Organization for Victim Assistance (NOVA)
• National Suicide Prevention Lifeline. Call 1-800-273-TALK (8255)
• Now I Lay Me Down to Sleep (NILMDTS), a nonprofit organization of professional photographers who, as volunteers, take photos for grieving parents, when a baby dies
• Parents of Murdered Children (POMC, for family and friends of those who have died by violence)
• Right to die organizations (world directory, Final Exit)
• SAVE (Suicide Awareness, Voices of Education), suicide prevention
• Teen Suicide Prevention Campaign (American Foundation for Suicide Prevention). Watch these brief public service announcements (PSAs)
• Violent Death Bereavement Society
"An assisted dying law would not result in more people dying, but in fewer people suffering."
• The Last Day of Her Life (Robin Marantz Henig, New York Times Magazine, 5-14-15) When Sandy Bem found out she had Alzheimer’s, she resolved that before the disease stole her mind, she would kill herself. The question was, when? (Read this beautiful story with a tissue on hand.)
• My Right to Die: Assisted suicide, my family, and me. (Kevin Drum, Mother Jones, Jan./Feb. 2016) Framed by a particular story, this is an excellent overview of the social and legal (U.S.) history of assisted suicide, physician-assisted suicide, aid-in-dying, right to die legislation. Will assisted suicide be the next civil rights battle? Drum faces the issue himself, as little by little multiple myeloma resists his battle against it. "My choice has always been clear: I don't want to die in pain—or drugged into a stupor by pain meds—all while connected to tubes and respirators in a hospital room. When the end is near, I want to take my own life. ... I suspect that taking your own life requires a certain amount of courage, and I don't know if I have it. Probably none of us do until we're faced with it head-on." The piece concludes: 'When he signed California's right-to-die bill, Gov. Brown attached a signing statement. "I do not know what I would do if I were dying in prolonged and excruciating pain," he wrote. "I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn't deny that right to others."'
• Support Death with Dignity (Compassion & Choices) Nearly 7 in 10 Americans support giving terminally ill, mentally competent adults the option to access life ending drugs, yet it is not authorized in 45 states.
• Death With Dignity Should Not Be Equated With Physician Assisted Suicide (Peter Ubel, Forbes, 8-26-13)
• Death with Dignity and Palliative Care (Melissa Barber, Living with Dying blog, Death with Dignity National Center, 8-28-13).
• The Dying of the Light (Craig Bowron, Washington Post, 1-11-09) This isn't about euthanasia. It's not about spiraling health care costs. It's about the gift of life -- and death. It is about living life and death with dignity, and letting go. ...At some point in life, the only thing worse than dying is being kept alive.
• Aid-in-Dying Laws Are Just a Start (Katy Butler, Opinionator, NY Times, 7-11-15) "In the hour of our deaths, most of us will yearn not to cut short our time but for a “soft technology” of compassion, caring and interpersonal skill... To truly die with dignity, we will need good nursing, practical support, pain management and kindness. All should be better reimbursed by Medicare."
• 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."
• My Decision to Die: A terminal cancer patient's controversial choice (Nicole Weisensee Egan, People, 10-27-14) Headline: Terminally Ill Brittany Maynard: Why I'm Ending My Life in Less Than Three Weeks. Maynard, 29, has terminal brain cancer and has made plans to end her own life with the sedative Secobarbitol on Nov. 1 if her suffering becomes too much to handle. See links to more stories about this death-with-dignity advocate on website for The Brittany Maynard Fund. "With one six-minute video, Brittany Maynard started a global conversation about death with dignity."
• Long Legal Battle Over as Schiavo Dies (Manuel Roig-Franzia, Wash Post, 4-1-05) Florida Case Expected To Factor Into Laws For End-of-Life Rights
• Death with Dignity: The Oregon Experience by Susan Hedlund (Association for Death Education and Counseling, or ADEC)
• Why Americans Can't Die With Dignity (Mother Jones, 9-7-13) Katy Butler on overtreatment, end-of-life suffering, and the need for a Slow Medicine movement.
• I didn't like it, but this was the death she chose (Cindy Schweich Handler, Washington Post, 6-21-16) "While her pronouncement that she’s “had a good run” has left Harry and me sidelined with shock, our eldest son, Ted, understands. A graduating fourth-year medical student in Boston, he has often relayed horror stories about the hospital patients whose bodies are kept alive long after their occupants have experienced any pleasure in them."
• Life, Death & Lee (a collection of stories chronicling how Northampton resident Lee Hawkins'got the death she planned for)
---Full of life, Lee Hawkins decides to plan her death (Laurie Loisel, Daily Hampshire Gazette, 9-22-14, photos by Carol Lollis) At age 90, Lee stopped taking in food and water, a method now common enough to have its own acronym: VSED, for voluntarily stopping eating and drinking. "Neither Lee nor her doctor saw this as an act of suicide, but something far more natural." This three-part series chronicles Lee’s "decision to bring about her death and the health care workers, family members and friends who accompanied her on a journey of her choosing."
---About this series
---After decision made, time for Lee Hawkins’ slow goodbye to friends, family (9-23-14)
---Decision by Lee Hawkins to stop eating and drinking prompts new policy at VNA & Hospice of Cooley Dickinson (9-24-14) “In every state this is an option, it’s a legal option,” Kirk said. “You don’t need anybody’s permission to stop eating and drinking.”
• Aid-In-Dying Laws Only Accentuate Need For Palliative Care, Providers Say (Anna Gorman, Kaiser Health News, 12-1-15) KHN staff writer Anna Gorman reports: "More times than she can count, Dr. Carin van Zyl has heard terminally ill patients beg to die. They tell her they can’t handle the pain, that the nausea is unbearable and the anxiety overwhelming. If she were in the same situation, she too would want life-ending medication, even though she doubts she would ever take it. 'I would want an escape hatch,' she said. Earlier this month, California law became the fifth — and largest — state to allow physicians to prescribe lethal medications to certain patients who ask for it."
• The Traveler's Final Journey (Carrie Seidman, Herald Tribune) Dorothy Conlon's final journey took 16 days.
• End-of-life resources (sidebar for Dorothy's Final Journey)
• Diane Rehm: My Husband's Slow, Deliberate Death Was Unnecessary (Maggie Fox, NBC News) Polls show that 65 percent or more of the U.S. population supports having an option available to help people choose a quicker, more painless death, Compassion & Choices says. This is different from assisted suicide or euthanasia, the group stresses. “Assisted suicide is a crime in many states, including Oregon and Washington, where aid in dying is legal,” the group says....Compassion & Choices says it doesn't support euthanasia or "mercy killing," "because someone else — not the dying person — chooses and acts to cause death." What is called euthanasia and is legal in some European countries more closely resembles what the group calls aid in dying. “We do not let our little animals suffer and people shouldn’t have to suffer.”
John Rehm had to deliberately die by dehydration. It took nine days. “John said he felt betrayed,” Rehm said. He said, ‘I felt that when the time came, you would be able to help me.’”
• Diane Rehm Advocates for Aid in Dying Nationwide After Husband’s Painful Death From Parkinson’s (Compassion & Choices)
• NPR host Diane Rehm's disclosure about her husband's death puts light on end-of-life choice (Jodie Tillman, Tampa Bay Times, 7-11-14) A more complete piece than most of them on this story.
• Expanded Access: Information for Patients (U.S. Food and Drug Administration) Expanded access, also called “compassionate use,” provides a pathway for patients to gain access to investigational drugs, biologics and medical devices for serious diseases or conditions-- investigational drugs/devices not yet been approved by the FDA and not been proven to be safe and effective.
• Seeking the Right to Try (Kimberly Leonard, U.S. News, 11-18-14) Laws allowing terminal patients to try drugs not approved by the FDA have passed in five states, but experts question their efficacy.
• 'Right to Try' Legislation Tracker (RAPS) ( Alexander Gaffney, Regulatory Affairs Professional Society, 6-24-15) Since early 2014, more than 20 states have introduced so-called "Right to Try" bills in the hopes of allowing terminally ill patients to access experimental—and potentially life-saving—treatments more easily. These bills are modeled off a federal policy known as " Compassionate Use," but contain several key changes meant to make it faster and easier for patients to obtain experimental therapies. This Right to Try Legislation Tracker is meant to be a resource for regulatory professionals and patients to keep track of legislation as it moves through various state legislative bodies. Links to states with Right to Try Laws
• How State Right-To-Try Laws Create False Expectations (David Farber, Preeya Noronha Pinto, Arthur Caplan, and Alison Bateman-House, Health Affairs blog, 5-22-15) "Federal preemption laws prevent states from creating workarounds that purport to supersede the extensive regulatory scheme enforced by the FDA. Contrary to the hype surrounding them, so-called Right-to-Try laws do not create any additional “rights” for patients."
A Life-or-Death Situation (Robin Marantz Henig, NY Times Magazine, 7-17-13). A Right to Die, a Will to Live: As a bioethicist, Peggy Battin fought for the right of people to end their own lives. Suffering, suicide, euthanasia, a dignified death — these were subjects she had thought and written about for years, and suddenly, after her husband’s cycling accident, they turned unbearably personal. Follow-up story: Choosing to Die After a Struggle With Life (Henig, The 6th Floor, NY Times, 8-21-13) On Saturday, July 27, six days after the article was published in print, , Brooke Hopkins finally decided he’d had enough. "Later, Peggy told the Tribune reporter, Peggy Fletcher Stack, that 'it was peaceful and painless, just as he wanted it' — close to the kind of ending he described to me earlier as a 'generous death.'" Here's a video slideshow of about the peaceful end of Brooke Hopkins' life (Peggy Fletcher Stack, Salt Lake Tribune, 8-29-13
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. I agree with Robin Henig: ""One of the most beautifully done, searing articles I've ever read about death in the age of medical intrusion." Quoting from the article: "The traditional exits, of a sudden heart attack, of dying in one’s sleep, of unreasonably dropping dead in the street, of even a terminal illness, are now exotic ways of going. The longer you live the longer it will take to die. The better you have lived the worse you may die. The healthier you are – through careful diet, diligent exercise and attentive medical scrutiny – the harder it is to die. Part of the advance in life expectancy is that we have technologically inhibited the ultimate event. We have fought natural causes to almost a draw. If you eliminate smokers, drinkers, other substance abusers, the obese and the fatally ill, you are left with a rapidly growing demographic segment peculiarly resistant to death’s appointment – though far, far, far from healthy."
At the end of a loved one's life, why is it so hard to let go? (Craig Bowron, Washington Post, 2-22-12). Craig Bowron is a hospital-based internist in Minneapolis. "When families talk about letting their loved ones die 'naturally,' they often mean 'in their sleep' — not from a treatable illness such as a stroke, cancer or an infection. Choosing to let a loved one pass away by not treating an illness feels too complicit; conversely, choosing treatment that will push a patient into further suffering somehow feels like taking care of him. While it's easy to empathize with these family members' wishes, what they don't appreciate is that very few elderly patients are lucky enough to die in their sleep. Almost everyone dies of something."
UNNATURAL CAUSES | SICK AND DYING IN SMALL-TOWN AMERICA (Washington Post series, April 8, 2016)
• ‘We don’t know why it came to this’ ( Eli Saslow, Washington Post, 4-8-16) As white women between 25 and 55 die at spiking rates, a close look at one tragedy, in rural Oklahoma.
• A new divide in American death (Joel Achenbach, Dan Keating, Washington Post, 4-8-16) An urban-rural mortality gap emerges among whites as risky behaviors work to defy modern trends. White women and men in small cities and rural areas are dying at much higher rates than in 1990, while whites in the largest cities and their suburbs have steady or declining death rates. INCREASING DEATH RATES: From 1990 through 2014, the mortality rate for white women rose in most parts of the country, particularly around small cities and in rural areas. Rates often went up by more than 40 percent and, in some places, doubled. DECLINING DEATH RATES: Mortality rates were most likely to decline in the Northeast corridor and in large cities that anchor metropolitan areas of more than a million people, including Chicago, Los Angeles, Miami, St. Louis and Houston.
• Some regions are hit especially hard, such as the belt of poverty and pain that runs across the northern tier of the South, incorporating much of West Virginia, Kentucky, Tennessee and Arkansas. But significant increases in white mortality also showed up in the small-town and rural Midwest — such as Johnson County, Iowa, home of the University of Iowa — and in parts of the American West, such as Nye County, Nev., and Siskiyou County, Calif.
• Multiple factors are converging to produce this corrosion of American health. Foremost is an epidemic of opioid and heroin overdoses that has been particularly devastating in working-class and rural communities.
• Another killer is related to heavy drinking. Deaths of rural white women in their early 50s from cirrhosis of the liver have doubled since the end of the 20th century, The Post found.
• Suicides are also on the rise. The suicide rate is climbing for white women of all ages and has more than doubled for rural white women ages 50 to 54.
• Other trends may be contributing to the die-off, including obesity.
• Where living poor means dying young (Emily Badger and Christopher Ingraham, WaPo, 4-11-16) Men in the bottom income quartile live longer along the West Coast than in Las Vegas, Louisville and industrial Midwest towns, such as Gary, Ind. Life "expectancies continuously rise with income in America: The modestly poor live longer than the very poor, and the super-rich live longer than the merely rich." "...places with high shares of college graduates, high population density, high home values and high government expenditures per capita were correlated with better life expectancies for the poor. In some ways, this finding is surprising..."
Compassionate Friends (national self-help organization for help grieving the loss of a child of any age). Resources include a Chapter Locator and online brochures on topics ranging from Understanding Grief, Sudden Death, Surviving Your Child's Suicide or Homicide, The Death of an Adult Child, Death of a Special-Needs Child, Adults Grieving the Death of a Sibling, Suggestions for Various Professionals Dealing with Someone's Loss of a Child. Compassionate Friends' credo: The Compassionate Friends credo: "We reach out to each other in love to share the pain as well as the joy, share the anger as well as the peace, share the faith as well as the doubts, and help each other to grieve as well as to grow. We need not walk alone. We are The Compassionate Friends." Here Linton Weeks describes the healing that goes on at a Compassionate Friends conference. He writes: "No matter how your child dies, there is an undeniable sense of failure among bereaved parents. Jan and I are haunted by Stone's and Holt's violent, senseless deaths, and all of the wrongs that can never be righted. Including the biggest of them all — we could not save our sons from death. We should have been the ones who died first, not our precious boys. We carry that guilt in our already shattered hearts, and we relearn every morning when we wake up that the loss of our children is something we will never get over. Or past. Or through." The Compassionate Friends conference brings together parents isolated from their friends, family, work by pain and inexperience with such loss.
Complicated Losses, Difficult Deaths: A Practical Guide for Ministering to Grievers (Roslyn A. Karaban, an eBook)
Dad's Last Visit (Pat Jordan, AARP, 2006, posted on Alex Belth's Bronx Banter). He spent his life pretending to be someone he wasn't. Now he wanted me to know the real deal.
Darcy at Her Days’ End :A beloved dog afflicted with the disease of old age brings her owner face to face with responsibility in its purest form (Verlyn Klinkenborg, NYTimes, 12-18-09)
The Death Penalty: Righteous Anger or Murderous Revenge?. A Conversation with Thomas Cahill, David R. Dow and Robert K. Elder. Moderated by Jill Patterson (posted on Creative Nonfiction)
The Depressed Child
‘Everyone Welcome’—Even Now (Chris Buice, The Daily Beast, 1-9-09). After a senseless act of violence in our church, we did not give in to anger. We sought a better way.
A Facebook story: A mother's joy and a family's sorrow. Ian Shapira, Washington Post, has edited and annotated Shana Greatman Swers Facebook page to tell her story from pre-baby date nights to a medical odyssey that turned the ecstasy of childbirth into a struggle for life.
Families of Military Suicides Seek White House Condolences (James DAO, NY Times, 11-25-09, on pressure to change a hurtful policy)
Farrah Fawcett's Long Goodbye (Jim Rutenberg, NY Times, 5-27-11). Dying of cancer, she authorized a documentary of her final days. "Ms. Fawcett had intended the film to address shortcomings she saw in American cancer treatment and to present it in art-house style....After [Ryan] O’Neal and NBC gained full control of the documentary, the film took on the feel of network celebrity fodder — at once more glossy and more morbid....Many scenes addressing the American medical system were scrapped or truncated." Her final story became the object of a lengthy battle.
The Good Short Life by Dudley Clendinen (NYTimes, 7-9-11). Living with Lou Gehrig's disease (ALS) is about life, when you know there's not much left. And Writer Dudley Clendinen has chosen not to go to the great expense and limited potential of extending his life--but to enjoy what he can of it, while he can. He learned he had the disease when he was 66, and Maryland Morning, an NPR news station, has been airing conversations with him about how he and his daughter Whitney have been dealing with the disease and its implications. Listen to the podcasts
The Guardians: An Elegy by Sarah Manguso. “A bittersweet elegy to a friend who ‘eloped’ from a locked psychiatric ward . . . [Manguso] explores the extent to which we are our friends’ guardians and, in outliving them, the guardians of their memory . . . Manguso’s writing manages, in carefully honed bursts of pointed, poetic observation, to transcend the darkness and turn it into something beautiful. The results are also deeply instructive, not in the manner we’ve come to fatuously call “self-help” but in the way that good literature expands and illuminates our realm of experience.” —Heller McAlpin, Barnes and Noble Review
How the mother of a slain 9-year-old sank into despair, then sought justice (Neely Tucker, Washington Post 1-20-10, part 1. Slow-loading. Part 2: Carol Smith fought for justice after daughter Erika's murder in Silver Spring
How to Die by Joe Klein, reads the cover of 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."
How to Die: Safeguards for Life-Ending Decisions (by James Leonard Park). Read this book free online. He defines terms for the right to die (e.g., distinguishes between "irrational suicide" and "voluntary death") and writes about protecting patients from greedy relatives, from family pressure to die, and from health-care administrators who must save money, and other safeguards. Very informative and in useful linked format.
If You Have Dementia, Can You Hasten Death As You Wished? (Robin Marantz Henig, All Things Considered, NPR, 2-10-15). Choosing an endgame is all but impossible if you're headed toward dementia and you wait too long. Part of what happens in a dementing illness is that the essential nature of the individual shifts. Listen or read transcript.
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)
In Romania, bribery is a health problem (Dan Bilefsky, NY Times, 3-8-09, from a story in International Herald Tribune) Medical Care in Romania Comes at an Extra Cost
KOTA blog (poems of grief, Knowing Ourselves Through Art)
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?"
Lives Cut Short by Depression (Daniel Ofri, Well, NY Times 6-9-11)
'Making Toast': Simple Gestures for Moving On, National Public Radio story and review of 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."
The Mercy Papers: A Memoir of Three Weeks by Robin Romm (a young woman's raw unflinching account of losing her mother to cancer--with no sugar coating, as one reviewer puts it)
Months to Live, Palliative Care Doctor Fought for Life (Anemona Hartocollis, NYTimes, 4-3-10). Desiree Pardi the palliative care doctor who believed in a peaceful death, chose at the end of her own life to endure a lot, even though she knew deep inside "this was not fixable," because she wasn't ready to let go.
Moving Away From Death Panels: Health Reform for the Way We Die (Ira Byock, The Atlantic, 3-6-12). There is surprisingly little disagreement about what constitutes good care at the end of life, but we still can't seem to fix any of our problems. It's time for conservatives and progressives to declare a truce before we lose opportunities for health reform to improve the way Americans are cared for and die.
Murder-Suicide: A Review of the Recent Literature (Scott Eliason, Journal of the American Academy of Psychiatry and the Law Online Sept. 2009)
Music for Funerals and Memorial Services. This could be a healing part of the process of burying the dead. Here are links to samples of selections that may help you remember the good times, and mourn the end of the life.
Out of This World (Pulse: Voices from the heart of medicine). Fourth-year medical student Katelyn Mohrbacher on the family's and medical staff's experience with an eighty-year-old man in a persistent coma.
Sick and Tired (Paul Rousseau, in Pulse: Voices from the heart of medicine). A mother being kept alive by transfusions is sick of them and must decide whether to continue for the sake of her daughter.
The Still Point of the Turning World by Emily Rapp. This luminous memoir about mothering a dying child, Ronan, from his diagnosis with Tay-Sachs disease, a degenerative condition with no cure is also about "the loving process of letting go while holding on for dear life." Read Sarah Manguso's review, Requiem (NY Times, 3-15-13) and listen to Terry Gross's interview with the author (Fresh Air, NPR, 3-18-13).
Terminally Ill California Mom Speaks Out Against Assisted Suicide (Stephanie O'Neill, NPR: All Things Considered, 5-20-15)
Resources for when terminal or life-threatening illness requires decisions about what individuals, families, and professional caregivers should do
• 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)
• 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.
• 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):
• In Plain Language: A Glossary Of Terms For End-Of-Life Planning (New Hampshire Public Radio, 8-28-13)
• 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.
• 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 Conversation Project (important discussions families need to have later in life)
• The Conversation: A Family's Private Decision (ABC News)
• 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.
Terminology is a problem in discussing this subject. What supporters call "aid-in-dying," opponents call "physician-assisted suicide," emotionally freighted phrases that cannot capture the choices individuals and families face in the presence of prolonged illness.
• Another Word for It (I highly recommend this essay by Alison Lester, about her father's death in 2010). Lester writes of this essay (in a comment about a RadioLab podcast, The Bitter End) "My father owned the way he wanted to die in a way that had us all in awe." Lester's essay "covers what it was about him that made it possible for him to decide how to end his life and see that decision through, and what it required from us as a family. It is my fervent hope that this account of his death can help people facing similar situations."
• Despite Sweeping Aid-In-Dying Law, Few Will Have That Option (Robin Marantz Henig, Shots, NPR, 10-7-15)
• Lawsuit Seeks to Legalize Doctor-Assisted Suicide for Terminally Ill Patients in New York (Anemona Hartocollis, NY Times, 2-3-15) A group of doctors and terminally ill patients are asking New York courts to declare that doctor-assisted suicide is legal and not covered by the state’s prohibition on helping people take their own lives. Assisted suicide — advocates prefer the term “aid in dying” — is legal in only a few states, including Montana, Washington, New Mexico, Oregon and Vermont. The author lays out the arguments for and against.
• Cancer Patients And Doctors Struggle To Predict Survival (Amanda Aronczyk, Shots, NPR, 2-10-15) "...prognoses are almost never that clear-cut, despite the fact that patients need to make big decisions based on those numbers. Should she quit her job? Take that dream cruise? Write a living will? Physicians play a part in the confusion, too. Doctors consistently overestimate how long a patient has to live... And if patients think a doctor is doing a good job of communicating with them, they're more likely to be erroneously optimistic about a cure. That can keep patients from fulfilling key goals before they die."...Sometimes a family's desire to "think positive" can make people reluctant to bring up death or dying. "And the end result is that the patient is left alone with his fear of dying and he can't speak to anyone about it." Levin also wants the doctors to make it clear to their patients that they will not abandon them if the worst-case scenario comes to pass.
• Sharlotte Hydorn of GLADD exit bags dies at 94 (Faye Girsh, ERGO, Assisted Dying blog, 12-13-13) "...she did so much to give people around the world the comfort and reassurance of a peaceful death by making and distributing her GLADD exit bags. GLADD = Good Life and Dignified Death." A story in which it's not always clear who the good guys are.
• A Candid Conversation with Public Radio's Diane Rehm (Part 1). Public radio host Diane Rehm‘s new book “On My Own” details her husband’s battle with Parkinson’s Disease, and her decision to support “right to choose to die,” as she puts it, after John Rehm was denied assisted suicide and starved himself to death. In the first of a two-part interview, Here & Now’s Robin Young speaks with Rehm about her often fraught marriage and her husband’s illness. Part 2, an excerpt from Rehm's book On My OwnWhen John Rehm could not legally receive medically aid to die comfortably (his state didn't allow it), he followed his doctor’s suggestion and starved himself to death. The experience set Rehm on a path to better understanding medically assisted death, which is only legal in a handful of states.
• The terminal confusion of Dignity in Dying (Jenny McCartney, The Spectator, UK, 7-5-14) The closer you look at the campaign in the UK to legalize assisted dying, the less reassuring it all becomes. What is this clause of ‘six months or less’ to live? As most doctors know, such diagnoses can be deeply unreliable. And by what logic do we attach an ‘assisted death’ to a six-month prognosis but not, say, that of a year?... If you were around in the days when the US series M*A*S*H was a regular feature on British television, its sing-song theme is probably still lodged in your memory: ‘Suicide is painless/ It brings on many changes/ And I can take or leave it if I please’. However catchy, it is broadly untrue. The human life force is stubborn, and it takes a visceral struggle to extinguish it. Suicide, as commonly practised by amateurs, is not painless: it is frequently agonising, complicated, botched and has ample potential to leave one still alive but with a cruel legacy of permanently damaged health to add to one’s existing woes.
• Assisted suicide compromise (Arthur Caplan and Wesley J. Smith, USA Today, 11-13-14). As matters stand, the law requires patients considering hospice to make an awful choice. In exchange for insurance paying for hospice care — which focuses on pain control, symptom management and social support — the patient must forgo all other forms of treatment. As Ira Byock says, "A third of all U.S. hospice patients die within a week of being admitted. Thus, because of the 'terrible choice' Medicare rules impose, hospice is not doing end-of-life care as much as brink-of-death care."
• My right to death with dignity at 29 (Brittany Maynard, CNN Opinion, 10-7-14). Note that what makes her feel better is knowing she has a choice.
• Physician-Assisted Dying: Compassion or a Slippery Slope? (Roxanne Nelson, Medscape, 8-13-15) This piece draws on two reports, one from the Netherlands and one from Belgium, the first countries to legalize these practices.
• The End Is Near: Lawrence Egbert has replaced Jack Kevorkian as the face of assisted suicide in America. (Manuel Roig-Franzia, Wash Post Magazine, 1-19-12) He has helped about 300 people die but, he says, "I never get used to it." A thoughtful piece, which explains death by helium, among other things.
• ‘Aid in Dying’ Movement Takes Hold in Some States Erik Eckholm, NY Times, 2-7-14) "Helping the terminally ill end their lives, condemned for decades as immoral, is gaining traction. Banned everywhere but Oregon until 2008, it is now legal in five states....About 3,000 patients a year, from every state, contact the advocacy group Compassion & Choices for advice on legal ways to reduce end-of-life suffering and perhaps hasten their deaths."
• Politics: Democrats Shouldn’t Endorse Suicide (Dr. Ira Byock, Politico, 6-7-15) "For years it seemed like we were on a path to a future in which every person could be assured of comfort and having their dignity honored through the very end of life. Unfortunately, countervailing forces, chief among them the profit motive, supervened. Instead of transforming mainstream health care to become genuinely person-centered, hospice, palliative medicine and geriatrics are largely being absorbed within corporatized medicine." "Despite having the resources and technical know-how to reliably care well for people through the end of life, a persistent public health crisis surrounds the way we die." "An authentic, socially sound solution to this crisis is readily achievable if we can muster the will to demand it. A tectonic shift in the way healthcare is paid for—from financially rewarding quantity of services to measured quality of care delivered—has the potential to improve care for seriously ill people in transformative ways."
• Hoping To Live, These Doctors Want A Choice In How They Die (Anna Gorman, Kaiser Health News, 3-30-15) The American Medical Association still says that “physician-assisted suicide is fundamentally incompatible with the physician’s role as healer.” ... But a recent survey of 21,000 doctors in the U.S. and Europe shows views may be shifting. According to Medscape, the organization that did the survey, 54 percent of American doctors support assisted suicide, up from 46 percent four years earlier." One doctor's story.
• Contemplating Brittany Maynard's Final Choice (Nancy Shute, Shots, NPR, 11-3-14) "...a study published last year in the New England Journal of Medicine found that just 16 percent of 114 terminal cancer patients who had asked about assisted suicide at the Seattle Cancer Care Alliance eventually decided to kill themselves....The most common reason people gave for considering assisted suicide was fear of a loss of autonomy."
• Quebec's 'dying with dignity' law would set new standards (Janet Davison, CBS News, 2-17-14) Quebec's proposed Bill 52 follows Europe's lead, legalizing both physician-assisted suicide and voluntary euthanasia for those experiencing "unbearable suffering," but who may not be within months of dying, which is the U.S. criterion. Related story: The fight for the right to die (CBS News, 6-15-12)
• A Life-or-Death Situation (Robin Marantz Henig, NY Times magazine, 7-17-13). Behind the Cover Story: Robin Marantz Henig on Making End-of-Life Decisions (and Changing Your Mind) (Rachel Nolan's interview appeared 7-22-13)
• Assisted Suicide (American Psychological Association). Arguments for and against and what experience in Oregon and Amsterdam teaches.
• In Alzheimer’s Cases, Financial Ruin and Abuse Are Always Lurking (Paul Sullivan, NY Times, 1-30-15) A woman in good health may express clear wishes about wanting to end a prolonged dying, but once Alzheimer's takes hold, she may not have the ability to end it herself. And children don't always honor their parents' wishes. Be sure to read this article.
• Happy Endings: In Real Life, Mystery Writer Promotes Assisted Death (Elihu Blotnick, Stanford Magazine, 11-8-12). At 82, Merla Zellerbach has been reborn as a mystery writer. Her culprits always get their just deserts, but her “main concern is with the needless suffering of those who don’t know they have choices, don’t want to know for religious or other reasons, or who don’t have access to aid in dying.” She explains: “I saw my beloved father die a terrible death from pancreatic cancer, and I also saw my late husband Fred die pain-free and peacefully, with physician help. After those two experiences, I began delving into the mysteries of life and death.”
• Assisted Suicide — Murder or Mercy? by Ellen Hawley Roddick (Open Salon, 2010). "Do I believe in assisted suicide? You bet I do. And here ... is why."
• Assisted-suicide laws advance, but issue still divides Americans (gperreault, ReligionLink, 7-7-13, with extensive links to other stories and sites)
• Who’ll be in charge when we die? (Ashton Applewhite's excellent essay on the need for an advocate who will know what we want and realize that we might change our minds, on the blog, Yo, Is This Ageist? on her website on ageism, This Chair Rocks)
• New Trial Ordered for Man Who Helped a Long Island Motivational Speaker Kill Himself (Russ Buettner, NY Times, 10-3-13). The state penal code allows an assisted suicide defense in a murder case if the defendant only caused or aided another person to commit suicide “without the use of duress or deception.” Things can go terribly wrong.
• Hemlock Society (now Compassion & Choices)providing information about options for dignified death and legalized physician aid in dying
• 'The Last Good Nights'. (John West tells Diane Rehm and radio listeners 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. He also tells the story in his book The Last Goodnights: Assisting My Parents with Their Suicides Here is an excerpt (Good Morning, America)
• Tread Carefully When You Help to Die: Assisted Suicide Laws Around the World (Derek Humphrey, author of Final Exit: The Practicalities of Self-Deliverance and Assisted Suicide for the Dying (Euthanasia Research and Guidance Organization, ERGO, which publishes other books on the subject)
• Hans Kueng Considering Assisted Suicide As Parkinson's Disease Suffering Continues (Tom Heneghan, Reuters, Huff Post 10-4-13) Roman Catholicism's best known rebel theologian is considering capping a life of challenges to the Vatican with a final act of dissent--assisted suicide.
• Doctor-Assisted Suicide Is Moral Issue Dividing Americans Most (Gallup poll, 5-31-11)
• Cancer center goes public with assisted-suicide protocol (Kevin O'Reilly, American Medical News, 4-22-13)
• Getting the Freedom to Die (Roy Speckhardt, director, American Humanist Association, on HuffPost, 04/16/2013, with stories about recent cases)
• In Montana, New Controversy Over Physician-Assisted Suicide (Paula Span, NY Times, New Old Age blog, 4-15-13)
• Assisted Suicide . Wikipedia's entry distinguishes between "assisted suicide" (where one person helps another end his life) and "euthanasia" or "mercy killing" (where another person ends the life). Indicates what the laws are in various countries and U.S. states.
• Why Do Americans Balk at Euthanasia Laws? (Room for Debate, NY Times, 4-10-12) What would need to change before the U.S. would legalize physician-assisted suicide?
---Comfort and Familiarity
---Too Many Flaws in the Law (Marilyn Golden, a senior policy analyst at the Disability Rights Education and Defense Fund)
---How the Dutch Are Different (Petra M. de Jong, a pulmonologist and head of Right to Die Netherlands)
---Address Inequalities First (Patricia King, the Carmack Waterhouse professor of law, medicine, ethics and public policy at Georgetown Law)
---Skeptical of the System (Rita L. Marker, a lawyer and executive director of the Patients Rights Council)
---The Role of Religion in the U.S. (Philip Nitschke, author of The Peaceful Pill Handbook)
---A Recipe for Elder Abuse (Margaret Dore, a lawyer in Washington State and president of Choice is an Illusion, a nonprofit organization opposed to assisted suicide)
---The Power of the the Culture War (Jacob Appel, a doctor and lawyer in New York City)
• The Hemlock Society, a right-to-die organization founded in Santa Monica, California, by Derek Humphrey, merged with and changed its name to Compassion & Choices in 2003, helping with end-of-life consultation.
• Frequently asked questions, Death with Dignity National Center
• Physician-assisted death vs. euthanasia (explanation for journalists, Association of Health Care Journalists). See also AHCJ's explanation of physician-assisted suicide
• Euthanasia and physician-assisted suicide (BBC). Types of euthanasia, arguments for and against, good deaths and the practicalities of dying, legislation, religious views
• Euthanasia and physician-assisted suicide, all sides to the issue, ReligiousTolerance.org, Ontario consultants on religious tolerance)
• A method for dying with dignity (Marcia Angell, Boston Globe, 9-29-12) This is not a matter of life versus death, but about the timing and manner of an inevitable death. We respect people’s right to self-determination when they’re healthy. That shouldn’t be denied to them when they’re dying.
• Government lawyer draws line between euthanasia and war (Marc Hume, Vancouver, Globe and Mail, 12-8-11). Read the comments, too.
• Listen on Interfaith Radio to"Bioethics and the Legacy of 'Dr. Death,' which includes interesting segments on dying with dignity (individuals having some control over when they die, particularly if they're heading toward the painful end of a terminal condition: After a segment in which Michael Schermer tells how our brains are hard-wired for "beliefs," listen to Should Doctors Hasten Death? (starts at 21 min 36 seconds), in which bioethicist Art Caplan explains the pros and cons of one of the most controversial practices in both religion and medicine. (You can listen to full segment here . A third segment is Making the Choice: Merrily's Story (begins at 33 min. 46 sec.). One important point: Knowing that they have some choice allows patients who are terminally ill to relax and accept the natural course of death; only 10% of those who knew they had the option to end their life with medication did so.
• Hastening Death, information and arguments for and against physician-assisted suicide (from online edition of HANDBOOK FOR MORTALS by Joanne Lynn and Joan Harrold
• Should an incurably-ill patient be able to commit physician-assisted suicide? (BalancedPolitics.org)
• State-by-State Guide to Physician-Assisted Suicide (ProCon.org)
• U.S. Supreme Court rulings on physician-assisted suicide cases (University at Buffalo Center for Clinical Ethics and Humanities in Health Care)
• For Belgium's Tormented Souls, Euthanasia-Made-Easy Beckons (Naftali Bendavid, Wall Street Journal, 6-14-13).
• Tony Nicklinson Dead: U.K. Man With Locked-In Syndrome Who Failed To Overturn Euthanasia Law Dies (Maria Cheng, Huff Post 8-22-12)
• Unflinching End-of-Life Moments, review in NYTimes of HBO documentary about physician-assisted suicide (to air summer 2011), How to Die in Oregon, which was shown at the Sundance Festival.
Order the beautiful gift edition of Dying: A Book of Comfort
• National Suicide Prevention Lifeline. Call 1-800-273-TALK (8255)
• International Association for Suicide Prevention (IASP) Go here to find suicide crisis centers throughout the world.
• American Foundation for Suicide Prevention/a> (AFSP). Walk to save lives: Out of the Darkness Walks
• Schools Turn To Software For Suicide Prevention — But Not Everyone's On Board (Anya Kamenetz, All Things Considered, 3-28-16) Many schools in the U.S. already use a software tool (GoGuardian) to block certain websites. Now, they're implementing that same tool to prevent suicide — the second leading cause of death among youth. Touted as a life saver for some students who displayed suicidal tendencies, it does raise concerns about privacy and such potential problems as the outing of (for example) gay students or students searching for information about sexually transmitted diseases.
• Suicide – A Preventable Tragedy (SAMHSA)
• Suicidal Impulses Don’t Have to Be Deadly (Maia Szalavitz Time, 3-28-14) "Although nearly 40,000 Americans die from suicide every year—a death toll similar to that from unintentional overdose and car accidents—most suicide attempts that are foiled are not repeated. The majority of suicides are committed on impulse....This is why guns are strongly linked to suicide: they make the odds that a passing impulse will be deadly much higher, and account for nearly half of all suicide deaths....The link to impulsivity may be one reason that suicidal thinking is relatively common but suicide itself is far more rare, and predicting who is at highest risk is difficult." Safety nets, which will go up around San Francisco's Golden Gate Bridge, are a proven lifesaver
• Suicide Prevention (SAMHSA) A list of organizations, links, articles, and other resources for suicide prevention (somewhat Native American oriented)
• Suicidal Thoughts: The Creative Lives and Tragic Deaths of a Prince and a Pauper (Nancy Spiller, Los Angeles Review of Books, 12-30-14) A must-read article.
• Stay: A History of Suicide and the Arguments Against It by Jennifer Michael Hecht. Read this interesting review of and story about the book by Temma Ehrenfeld (The Humanist, 4-22-14).
• Small Towns Face Rising Suicide Rates (Laura Beil, NY Times, 11-3-15) "Rural adolescents commit suicide at roughly twice the rate of their urban peers.... the realities of small-town life can take an outsize toll on the vulnerable. A combination of lower incomes, greater isolation, family issues and health problems can lead people to be consumed by day-to-day struggles..." A spouse's "sense of self-sufficiency combined with a fear of stigma" can keep him from treatment. So can a lack of privacy.
• Why we choose suicide (Mark Henick, TEDxToronto, 10-1-13) Video of a 15-minute talk.
• Notes From My Suicide (Kenneth R. Rosen, The Big Roundtable, 3-10-16)
• David Sedaris Talks About Surviving the Suicide of a Sibling (Blake Bailey, Vice, 6-1-15)
• How old-fashioned, pen-to-paper letters could help pull people back from the brink of suicide (Jenny Chen, WaPo. 4-7-16)
• Finding a Bed in Bedlam (Jo Marie Reilley, Pulse: Voices from the Heart of Medicine, 5-8-15)
• The Dying of the Whites (Ross Douthat, OpEd, NY Times, 11-7-15) "[T}he mortality rate for minorities in the U.S. continued to fall between 1999 and 2013, mirroring the trend in Europe, and the African-American death rate in particular fell hugely. [Though it was still high.] Amid the stresses of the dot-com bust and the Great Recession, it was only white Americans who turned increasingly to drugs, liquor and quietus....Noting that religious practice has fallen faster recently among less-educated whites than among less-educated blacks and Hispanics, their paper argues that white social institutions, blue-collar as well as white-collar, have long reflected a “bourgeois moral logic” that binds employment, churchgoing, the nuclear family and upward mobility. But in an era of stagnating wages, family breakdown, and social dislocation, this logic no longer seems to make as much sense....Maybe sustained growth, full employment and a welfare state that’s friendlier to work and family can help revive that nexus. Or maybe working-class white America needs to adapt culturally, in various ways, to this era of relative stagnation, and learn from the resilience of communities that are used to struggling in the shadow of elite neglect."
• Robin Williams and Why Funny People Kill Themselves (David Wong, Cracked, 8-11-14) but see also:
• 'It Was Not Depression That Killed Robin' (Kara Warner, People, 11-4-15) "It was not depression that killed Robin," Susan says, speaking to the public perception of what drove Williams to commit suicide. "Depression was one of let's call it 50 symptoms and it was a small one." "Frequently misdiagnosed, DLB is the second most common neurodegenerative dementia after Alzheimer's and causes fluctuations in mental status, hallucinations and impairment of motor function. The disease started taking its toll on Williams in the last year before his death, by way of its "whack-a-mole"-like symptoms which included heightened levels of anxiety, delusions and impaired movement." It took more than a year to arrive at a diagnosis of diffuse Lewy body dementia or dementia with Lewy bodies (DLB).
• The Death of Robin Williams, And What Suicide Isn't (Elizabeth.Hawksworth, BlogHer, 8-14-14)
• Biology of Suicide (NPR, audio and transcript, part of its End of Life series: Exploring Death in America)
• By My Own Hand by Anita Darcel Taylor (Bellevue Literary Review). Taylor writes that for those who go through the hell of manic depression, suicide is simply a tool to end great pain -- an "earned choice."
• Teenagers, Medication and Suicide Richard A. Friedman, NY Times, 8-3-15). Parents should not be afraid of prescriptions for antidepressants for their teenagers. By preventing depression, they probably save, rather than risk, lives.
• Daniel, 1988-2000: A child's suicide, unending grief and lessons learned (Sara Fritz, St. Petersburg Times, 11-16-03)
• The Two Suicides that Changed My Life (Beth Duckles, Narratively) A moving personal story that may help you see others' suicide in a new light.
How witnessing a shocking suicide on the San Francisco-Oakland Bay Bridge—and talking the dead man’s father through his grief—helped me understand my mother and the lifelong pain she has lived with.
• The View from Vista Bridge (Christen McCurdy, Narratively). Portland is known as the city of bridges—but it’s also a capital of suicides. After losing a close friend who jumped, I needed to find out why.
• Oregon Father’s Memorial Trek Across Country Ends in a Family’s Second Tragedy (Jack Healy, NY Times, 10-15-13) Joe Bell was walking across the country to tell the story of his gay son, Jadin, 15, who killed himself after being bullied.
• Prayers for Bobby: A Mother's Coming to Terms with the Suicide of Her Gay Son by Leroy Aarons. Mary Griffith persuaded her son Bobby to pray that God would cure him, but the church's hatred of homosexuality and the obvious pain his gayness was causing his family led him increasingly to loathe himself. After his suicide, her anguish led her on a journey from faithful churchgoer to national crusader for gay and lesbian youth. Read this story about her and Stephanie Reed, for a few of how parents feel after such a suicide, and what they often do about it.
• Decades after 2 suicide attempts, I'm thankful to have the life I nearly cut short (Jacquielynn Floyd Dallas News.com, 2-2-13). "For me, depression took on a camouflaged veneer of normal that made it difficult to “read the signals.” "What I suffered from was real. It was also temporary and entirely treatable."
• Murder-suicide disturbing trend among the elderly (Diana Reese, Washington Post, 1-26-13). "The typical case? A depressed, controlling husband who shoots his ailing wife — without her permission, according to Cohen. . . . Experts say depression, exhaustion and isolation all play a role; often, it’s men who are thrust into the unfamiliar role of caregiver. They may suffer from undiagnosed clinical depression. And if they learn their own health problems put them at risk of dying before their spouses, they may believe that no one else can take care of their wives as well as they can."
• Complicated Grief in Survivors of Suicide Loss (American Foundation for Suicide Prevention). Watch free video of webinar on subject.
• Copycat suicide (Wikipedia entry)
• Bible passages dealing with suicide (Religious.tolerance.org)
• Families of Military Suicides Seek White House Condolences (James DAO, NYTimes, 11-25-09, on pressure to change a hurtful policy)
• My big sister took her own life (Ali Grant, Globe & Mail, 4-8-10). "Suicide. My beautiful big sister, Isobel. Dead by her own hands at 62. Literally the unthinkable happening. My mind was unable to allow for the possibility that she would kill herself, in spite of the daily conversations we had, in spite of my knowing that she was struggling with pain, both physical and psychological. "
• On Suicide And why we should talk more about it (Clancy Martin, Ars Philosopha, Harpers Magazine, 6-25-13).
• Preventing Suicide: A Resource for Media Professionals (PDF, World Health Organization)
• Religion and Suicide (Betty Rollin hosts discussion for Religion & Ethics Weekly--listen or read transcript)
• Remembering Denny (Calvin Trillin writes about the life and unfulfilled potential of his Yale classmate and former close friend Roger "Denny" Hansen, a Rhodes scholar, academic, and State Department employee whose great promise ended in middle age with his suicide)
• Reporting on Suicide website. Download PDF of Recommendations for Reporting on Suicide (PDF, American Foundation for Suicide Prevention)
• Sad End to a Long, Slow Slide (Corey Kilgannon, New York Times Regional edition 8-12-07), a loving couple dies together
• SAVE (Suicide Awareness, Voices of Education), suicide prevention
• Suicide and the Media (New Zealand Ministry of Health, tips on media coverage to reduce risk of encouraging suicide in at-risk individuals)
• Suicide Contagion and the Reporting of Suicide: Recommendations from a National Workshop (CDC)
• The Suicide Index: Putting My Father's Death in Order by Joan Wickersham. "Sixteen years ago, Joan Wickersham’s father shot himself in the head. The father she loved would never have killed himself, and yet he had. His death made a mystery of his entire life. Using an index—that most formal and orderly of structures—Wickersham explores this chaotic and incomprehensible reality. Every bit of family history—marriage, parents, business failures—and every encounter with friends, doctors, and other survivors exposes another facet of elusive truth. Dark, funny, sad, and gripping, at once a philosophical and deeply personal exploration, The Suicide Index is, finally, a daughter’s anguished, loving elegy to her father."
• Media and the hard truth about suicides (Stephen J.A. Ward, Center for Journalism Ethics, 9-24-11) "The guiding principle should be: publish uncomfortable facts where such information is necessary for a clear public understanding of the event and to indicate what social responses might be necessary."
• Suicide Notes (Liam Casey, Ryerson Review of Journalism 12-22-10). "I contemplated killing myself five years ago. Now, to help others, I call on all journalists to break the silence on our final taboo."
• Think about the words you use when covering suicide (Andrew Lowndes, AHCJ, Covering Health, 4-25-14). Journalists: Say died by suicide, or death by suicide because ‘committed suicide' stigmatizes families where suicide has occurred. You don’t say ‘committed’ cancer.
• The search for sensitive coverage of the tragedy of suicide: An Australian story (Leo Bowman, Center for Journalism Ethics, 4-17-13)
• Suicide Prevention (many useful resources from Centers for Disease Control and Prevention, CDC)
• Suicide Prevention (National Institute of Mental Health)
• Mice and Mothers by Nathalia Holt (partly about her mother's suicide). Too many deaths have no meaning. I needed these animals' lives to be part of the fight against H.I.V..
• Teen Suicide Prevention Campaign (American Foundation for Suicide Prevention). Watch these brief public service announcements (PSAs)
• Why Michael Grosvenor Myer left his wife to die alone (Andrew Alderson, New York Times, 11-29-08), the story of a novelist whose final gift to her husband was to die alone, sparing him a jail sentence for assisting in her suicide.
"When speaking of those who take their own lives, it is always most dignified to use silence or at least restrained language, for the ones left most vulnerable and most deeply hurt by such an occurrence can feel oppressed by the louder assertions of understanding, wisdom, and depth of remorse foisted on them by others. One must ask: Who is best served by speculation? Who is really able to comprehend? Perhaps we must, as human beings, continue to try and comprehend, but we will fall short. And the falling short will deepen our sense of emptiness." ~attributed to Yasunari Kawabata by Howard Norman, in the fifth section of his excellent memoir I Hate to Leave This Beautiful Place
• Adorján, Joanna. An Exclusive Love: A Memoir (translated by Anthea Bell). Adorján tries to make sense of the dual suicide of her fascinating grandparents, who survived the Holocaust and the Hungarian uprising of 1956 and died in a suicide pact in Denmark in 1991.
• Bialosky, Jill. History of a Suicide: My Sister's Unfinished Life (about both her sister, Kim's, life and death and about sibling loss and survival guilt)
• Bolton, Iris. My Son...My Son: A Guide to Healing After Death, Loss, or Suicide
• Farr, Moira. After Daniel: A suicide survivor's tale. Here is an excellent review of the book (PDF), in which the reviewer, Paul S. Links, writes: "This chilling account will remind physicians that the suicide survivor’s response is often a complex combination of posttraumatic features and guilt-laden grief. Both aspects must be worked through during the process of recovery....this book is not a tell-all story of the Toronto artistic scene. It is not an academic recounting of current scientific formulations of suicide. It is not a prescription for the self-directed recovery from grief. Rather, it is an offer of hope, a beautifully written journey of reclamation, and simply a very personal account of the author’s own grief."
• Fine, Carla. No Time to Say Goodbye: Surviving the Suicide of a Loved One
• Hammer, Signe. By Her Own Hand: Memoirs of a Suicide's Daughter
• Handke, Peter. A Sorrow Beyond Dreams (transl. Ralph Manheim, intro. Jeffrey Eugenides). A slim and sorrowful memoir of the author's depressed mother's life and suicide at 51.
• Lourey, Jessica. My Fiction Therapy (The Truth in Fiction). This moving story is the opening for a memoir in progress, tentatively titled Better than Gin: Transform Your Facts into Fiction that Sells (The One Year, One Book Challenge.
• Page, Patricia. Shadows on a Nameless Beach. A brief and beautifully crafted collection of essays, a memoir of the year after her son's death by suicide, her feelings of parental guilt, finding solace in walks through California's coastal landscape.
• 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?
• Sharples, Madeline. Leaving the Hall Light On. A mother's memoir of living with her son's bipolar disorder and surviving his suicide. Read review by Dr. Jason M. Dew and interview with the author (on Women's Memoirs).
• Stone, Geo. Suicide and Attempted Suicide: Methods and Consequences
• Styron, William. Darkness Visible. Also available free online (Internet Archive).
• West, John. The Last Goodnights: Assisting My Parents With Their Suicides
• Wickersham, Joan. The Suicide Index: Putting My Father's Death in Order "Sixteen years ago, Joan Wickersham’s father shot himself in the head. The father she loved would never have killed himself, and yet he had. His death made a mystery of his entire life. Using an index—that most formal and orderly of structures—Wickersham explores this chaotic and incomprehensible reality. Every bit of family history—marriage, parents, business failures—and every encounter with friends, doctors, and other survivors exposes another facet of elusive truth. Dark, funny, sad, and gripping, at once a philosophical and deeply personal exploration, The Suicide Index is, finally, a daughter’s anguished, loving elegy to her father."
• Taking Chance Home (Marine Lieutenant Colonel Strobl's simple and moving account of escorting the remains of Lance Corporal Chance Phelps home from Dover Air Force Base). You can watch HBO's film based on the story, Taking Chance, starring Kevin Bacon.
• TAPS (Tragedy Assistance Program for Survivors)
• Three Little Words . Roy Peter Clark's memorable series in the St. Petersburg Times, "a tale of trust, betrayal and redemption," and AIDS, which "challenges us to reconsider our thoughts about marriage, privacy, public health and sexual identity"
• UNITE (grief support after miscarriage, stillbirth, and infant death)
• What Broke My Father's Heart by Katy Butler (NY Times Magazine, 6-18-10). How putting in a pacemaker wrecked a family's life. Katy Butler's father drifted into what nurses call “the dwindles”: not sick enough to qualify for hospice care, but sick enough to never get better. She writes, of her parents: "I watched them lose control of their lives to a set of perverse financial incentives — for cardiologists, hospitals and especially the manufacturers of advanced medical devices — skewed to promote maximum treatment. At a point hard to precisely define, they stopped being beneficiaries of the war on sudden death and became its victims." You may also want to read Knocking on Heaven's Door: The Path to a Better Way of Death
• What Comes After by Lisa Mundy (Washington Post Magazine). They lost their daughter in the deadliest campus massacre in U.S. history. One parent wants to file a lawsuit. The other doesn't.
• What It Feels Like To Be Photographed In A Moment Of Grief (Coburn Dukehart, NPR, The Picture Show, 1-28-13)
• When Treating Cancer Is Not an Option (Jane E. Brody, Well, NY Times, 11-12-12). An excellent discussion of how doctors need to communicate with patients who are terminally ill (and check to see if their communications got through). Telling patients to plan for the worst but hope for the best gives them "better outcomes — less depression and less distress, and they’re more likely to die comfortably at home.”
• Why Didn't They Stop Him? (When Domestic Violence Laws Don't Work, by Phoebe Zerwick, O, the Oprah Magazine, August 2009)
• Recommended reading
What Broke My Father's Heart by Katy Butler (NY Times Magazine, 6-18-10). Now scheduled for publication, her book: Knocking on Heaven's Door: The Path to a Better Way of Death
Pills or medicine labeled acetaminophen, "Tylenol," or "aspirin-free pain relief" may all contain acetaminophen. Combining such drugs is like taking poison: it may kill you or irreversibly damage your liver.
If you are in a suicide crisis, call the National Suicide Prevention Lifeline 1-800-273-8255
" Take pride in your pain; you are stronger than those who have none." ~ Lois Lowry
Order a personally signed copy now: Dying: A Book of Comfort. (ASK for Pat to inscribe it.)
The Beneficial Effects of Life Story and Legacy Activities by Pat McNees (Journal of Geriatric Care Management, Spring 2009). Get PDF file of journal article here (61.9KB)