• We should all have the end-of-life conversation (Ellen Goodman on The Conversation Project). "Too many people are dying in the way they would not choose. Surveys tell us that 70 percent of Americans, for example, want to die at home but 70 percent end up dying in hospitals and institutions....Too many survivors, for that matter, are left not just mourning but feeling guilty, depressed, uncertain of whether they have done the right thing.... And we cannot wait for "the right time" because it will always seem too soon ... until it is too late." The Conversation Project, which she helped cofound, quotes Goodman in a WBUR interview about collecting stories about "good deaths" and "bad deaths": A good death? " I would say it’s, among other things, a pain-free death, and one in which you are not subjected to the kinds of aggressive care that you would choose not to be. We know that 70 percent of people want to die at home. And we know that 70 percent of people are dying in institutions, hospitals and, God help us, ICUs. So I would say a good death is dying in the way that you would choose, whatever it is." (Oregon Live, 7-15-13)
• The Conversation Project (slow-loading when it draws a lot of readers, but helpful when you get there!) as my friend Artie puts it: "Their goal is to demedicalize death, similarly to how birth has been partially demedicalized by encouraging home birth and letting dads in the delivery room with video cameras (not sure if the last one is an advance, but you get the idea). Different from "Death with Dignity" and doctor-assisted suicide because The Conversation Project does not agree on this issue and also because fewer then 1% will choose that route, based on experience in states like Oregon where it has been legal for a while. The project's starter kits are to help families or friends discuss what they want in a personal way. They are not supposed to be like the forms one fills out for doctors and hospitals (which are mainly intended to protect them from liability). There has been a lot of progress in the last five years. See Atul Gawande's book Being Mortal, a report by the Institute of Medicine, and a decision by Medicare to pay for end-of-life counseling visits (a big step from the panic over death panels when Obamacare was being voted on).
• How to Talk to Your Doctor (or any member of your health care team) (PDF, The Conversation Project)
• The Starter Kit (PDF, The Conversation Project)
• How do you want to die? A mission to make death part of popular conversation (Lynn Sherr interviewing various experts, PBS NewsHour, 3-28-15) A growing national movement to normalize end-of-life discussions among family and friends has gained traction in recent months. As Medicare considers whether to cover such conversations with physicians, The Conversation Project, a Boston-based non-profit, is highlighting the importance of talking openly about dying. .According to a survey the group conducted, more than 90 percent of people agree, saying they should have The Conversation. But only 30 percent have done so. The Conversation Project says, nothing will change until people start talking about it.
• Five Wishes. Changing the way we talk about and plan for care at the end of life. (Aging with Dignity) A living will that talks about your personal, emotional, and spiritual needs as well as your medical wishes--an easy-to-complete form that lets you say exactly what you want. The wishes: The person I want to make care decisions for me when I can't. The kind of medical treatment I want or don't want. How comfortable I want to be. How I want people to treat me. What I want my loved ones to know. See Sample document..
• Prepare (English or Spanish and oral is available). Step-by-step instructions and forms to let medical and family caregivers know your end-of-life wishes. (Beautifully and carefully designed website.)
• A Necessary Look at the End of Life in an ICU (Ellen Rand, Last Comforts blog). Ellen 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 Jessica Nutik Zitter MD (due out Feb. 2017).
• Zen and the Art of Dying Well (Courtney E. Martin, Opinion, New York Times, 8-14-15) "For someone who is dying, the past can be too complicated to contemplate and the future is jarringly unknown. Focusing on the present, Zen Hospice Project believes, is where the potential for living most meaningfully — even while dying — exists....Historically, neither private health insurance nor Medicare covers the cost of residential hospice care. One result is that when people don’t have a place to go or a care plan that’s realistic for their situation, they languish in their hospital bed, taking up a resource that the hospital cannot be reimbursed for." How the Zen Hospice Project does what it does.
• Why is it so hard to discuss end-of-life care? (Liz Seegert, Association of Health Care Journalists, 4-27-15). Addressed to journalists, who are often over-optimistic, selling hope. Treatment is not always a good idea, death must not always be fought, and it's important to understand "the gray zone"--"the area between active living, when curative medicine is effective, and active dying, when funding for hospice is available."
• Let's Have Dinner and Talk About Death (an interactive guide to having a conversation about dying).
• The Other Talk: A Guide to Talking with Your Adult Children about the Rest of Your Life (Tim Prosch, AARP) Helps you address these questions and others:
Who will manage your finances and how will you budget for unknown needs?
Where can your children find important documents they will need to help?
Where will you live if you need assistance?
What type of medical treatments do you want--and not want--and who will advocate for your needs?
• Wealthy parents fret over 'inheritance talk' with kids (Shelly Schwartz, CNBC, 7-22-15) A CNBC survey of wealthy parents found that many fret over whether the fortune they have earmarked for their heirs might stifle kids' drive, how much to leave, while others question how much they should reasonably bequeath and when to tell their kids about the financial windfall coming their way.
• Ethnic Differences Thwart End-of-Life Conversations (April Dembosky, KQED, State of Health, 4-22-15) Virtually all doctors have difficulty talking to their patients about death, and those conversations are even harder when the patient’s ethnicity is different from the doctor’s, according to a study (No Easy Talk: A Mixed Methods Study of Doctor Reported Barriers to Conducting Effective End-of-Life Conversations with Diverse Patients by Vyjeyanthi S. Periyakoil , Eric Neri, Helena Kraemer (PLOS One, 4-22-15) Number 1 barrier: language and medical interpretation issues. No. 2: religious and spiritual beliefs ("It's in the hands of God, so don't turn off the ventilator.") Sometimes mentioning the word "death" is taboo because that might be tempting fate. Periyakoil recommends the Stanford Letter Project solution -- urging patients to write letters to their doctor, in their own language, in their own words, about what matters most to them about the end of life.
"The letter addresses some important practical issues that are not currently addressed in the advance directive document. It clarifies the patient’s stance on palliative sedation should pain and symptoms become refractory. Most importantly, it offers guidance to the doctor about what to do when the health-care proxy overrides the patient’s stated wishes. We created an app that uses the letter template to generate pre-filled advance directives. By answering a few simple questions, patients are able to complete both the official advance directive and the letter (as a supplement to the advance directive) and to send the documents to their doctors to be saved in their medical records." ~ from The most important letter you may write. See full section of helpful articles about and guides to writing such a letter.
• Deficiencies In End-Of-Life Care Extend Across Ethnicities (Barbara Feder Ostrov, Kaiser Health News, 11-23-15)
• The Stanford Letter Project. New research at Stanford shows that most doctors are reluctant to talk to their patients about what matters most to them at the end of life. Download a letter template from the Stanford Letter Project to help you write a simple letter to your doctor about what you want most at the end of your life. And give it to your doctor.
• Death cafes and conversations about end-of-life concerns (links to several articles). At a Death Cafe people drink tea, eat cake and discuss death--a topic that too often remains in the closet because so many feel we should not talk about it...." talking about everything from advanced care directives to grieving rituals — it ends up being about not so much how we die but about how we live."
• Let's Have Dinner and Talk about Death. As described in the Atlantic article Discussing Death Over Dinner (Richard Harris, 4-16-16). A nonprofit is experimenting with shared meals where participants are asked to grapple with their own mortality. Founded by a group of medical professionals and wellness experts "concerned about the disconnect in the American health care system between how Americans say they would prefer to die (at home) and how they actually are more likely to die (in hospitals or care facilities)." (quoting Sixty and Me)
• Teenagers Face Early Death, on Their Terms (Jan Hoffman, Well, NY Times, 3-28-15)
• Voicing My Choices A blueprint for end-of-life choices, for adolescents and young adults living with a serious illness--focusing on topics identified as most important by young people. Nothing in Voicing My Choices overrides the legal authority of a parent or guardian in relation to a minor child. The document simply helps the parents and guardians to make good decisions based on the wishes of the seriously ill young person. See Frequently asked questions
• My Wishes (a booklet written in everyday language that helps children express how they want to be cared for in case they become seriously ill)
• Improving end-of-life care. Links to many helpful articles, including one about Knocking on Heaven's Door: The Path to a Better Way of Death by Katy Butler. Doctors tend to overestimate by 5 to 6 times the length of time failing patients have left. As a result, important conversations do not take place and family members are unprepared and insist on "doing everything" to save the patient. It takes weeks, maybe months, to really absorb the reality of a terminal diagnosis -- people go in and out of denial, taking time to process the news. "Although most of us claim no desire to die with a tube down our throat and on a ventilator, the fact is, as Katy Butler reminds us in “Knocking on Heaven’s Door,” a fifth of American deaths now take place in intensive care, where 10 days of futile flailing can cost as much as $323,000..." A "thoroughly researched and compelling mix of personal narrative and hard-nosed reporting that captures just how flawed care at the end of life has become."
• Larry King Is Preparing for the Final Cancellation (Mark Leibovich, NY Times, 8-26-15) Five years after CNN pulled the plug on his show, the TV host is thinking about whom he’ll book for his funeral.
• Am I dying?-- The honest answer." (Matthew O'Reilly, TED@NYC, July 2014). I highly recommend this brief transcript of a TED talk about how to answer that question (Am I dying?) when you're alone with a person who is clearly dying.
• 5 things you should know about end-of-life conversations (Megan Thompson, PBS NewsHour, 3-28-15)
• Atul Gawande, “Hope is Not a Plan” When Doctors, Patients Talk Death
• Being Mortal: Medicine and What Matters in the End (Atul Gawande). (from a review by Sara Nelson: 'Yes, “death is the enemy,” he writes. “But the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee... someone who knows how to fight for territory that can be won and how to surrender it when it can’t.” In his compassionate, learned way, Gawande shows all of us—doctors included—how mortality must be faced, with both heart and mind.' From the book itself: "The terror of sickness and old age is not merely the terror of the losses one is forced to endure but also the terror of the isolation. As people become aware of the finitude of their life, they do not ask for much. They do not seek more riches. They do not seek more power. They ask only to be permitted, insofar as possible, to keep shaping the story of their life in the world-- to make choices, and sustain connections to others according to their own priorities."
• Choosing Not to Choose (Robin Marantz Henig, New Old Age, NY Times, 4-30-09) "What our mother confronts now is an impossible choice: an immediate, relatively low risk of injury or death during five hours of grueling surgery, versus the long-term risk — those 50-50 odds — of gradual disability and death over the next few years. On the one hand, she wants to avoid the scary operation and the harrowing recovery. On the other hand, she wants to do whatever it takes to live as long as she can. She knows she can’t have both."
• JAMA Forum: Conversations About How We Die (Diana Mason, News@JAMA, 3-18-15)
• Hospice care and palliative care (links to resources)
• Helping a dying friend.
• Can Good Care Produce Bad Health? (Amy Berman, RN, The Health Care Blog, 8-15-12) "As a nurse and a senior program officer at a health care foundation, I understood my disease and my health care options well enough to make an informed decision about my treatment. What about the millions of older Americans facing a terminal illness or chronic disease? How can they possibly stand up to the juggernaut of our health system and say, “No. I want care that focuses on my goals, care that is centered on me.”
• Saying Goodbye.
• Statistics about death, mortality, long-term care, hospice care, and palliative care
• What to say (or not say) to those who are dying or grieving (Helping a Dying Friend)
• More stories about death and dying
• Housing options for seniors and disabled (because sometimes you need information about various options)
• Site Map (to find more links, information, and resources)