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End-of-life planning and decision-making
Have "The Conversation"

October 9, 2015

Tags: Compassionate choices, Choosing Wisely, slow medicine, death with dignity

by Pat McNees
Resources for when terminal or life-threatening illness requires decisions about what individuals, families, and professional caregivers should do. Let's start with
Five Wishes (Aging with Dignity -- changing the way we talk about and plan for care at the end of life). 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)

The Conversation Project (important discussions families need to have later in life)
The Conversation: A Family's Private Decision (ABC News)
Conversations About Dying (under Advance Directives, etc., ComfortDying.com site)
Talking About How You Want To Die Before It’s Too Late Ellen Goodman on "the 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." (Sacha Pfeiffer interview, WBUR, posted on The Conversation Project, 8-13-12)

CaringInfo provides info and support for anyone who is planning ahead, caregiving, living with a serious illness or grieving a loss.

Death with Dignity Death with Dignity is an end-of-life option that allows certain terminally ill people to voluntarily and legally request and receive a prescription medication from their physician to hasten their death in a peaceful, humane, and dignified manner. Death with Dignity is governed by state legislation. See map: States with a Death with Dignity statute a>.
Stories from Death with Dignity Seven in ten Americans support Death with Dignity as an end-of-life option for the terminally ill; most people join our movement because of a heartbreaking personal experience. We receive stories of such experiences every day, and every day they inspire us to work toward ensuring terminally-ill Americans have the freedom to decide how they die.
Frequently asked questions (FAQs) about Death with Dignity
Articles about the Death with Dignity movement.


Physician orders for life-sustaining treatment (POLST) paradigm. POLST is an approach to end-of-life planning based on conversations between patients, loved ones, and health care professionals designed to ensure that seriously ill or frail patients can choose the treatments they want or do not want and that their wishes are documented and honored. (This is in contrast to "death with dignity," which is about deliberately ending life.) Find a POLST program in your state.

Consumer's Toolkit for Health Care Advance Planning (American Bar Association). You can download some or all of the ten tools in the toolkit: 1. How to Select Your Health Care Agent or Proxy; 2. Are Some Conditions Worse than Death? 3. How Do You Weigh Odds of Survival? 4. Personal Priorities and Spiritual Values Important to Your Medical Decisions; 5. After Death Decisions to Think About Now; 6. Conversation Scripts: Getting Past the Resistance; 7. The Proxy Quiz for Family & Physician; 8. What to Do After Signing Your Health Care Advance Directive; 9. Guide for Health Care Proxies; 10. Resources: Advance Planning for Health Care (updated).

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.

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.

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):
---Clinician lists
---Patient-friendly resources

Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life (Institute of Medicine, 9-17-14) Download report (PDF) for free, and look at slides, etc., online.

Before I Die (a global public art project that invites people to reflect on their lives and share their personal aspirations in public space)

Death Cafe . A Death Cafe is a group directed discussion of death with no agenda, objectives or themes. It is a discussion group rather than a grief support or counseling session.

Death over dinner. This story on NPR may be the easiest way to explain it: Let's Talk About Death Over Dinner (Lesley McClurg, Food for Thought, The Salt, 5-8-15). And here's Michael Hebb's TED Talk, Let's have dinner and talk about death (6-29-13) "Breaking bread has historically been a step toward social progress, says Michael Hebb. How can we use the power of home and hearth to change healthcare?"

Deathwise (a nonprofit organization passionately committed to helping people talk about, make decisions and plan for the end of their lives)

Engage with Grace (the one slide project). Watch the video of the Engage with Grace story

Honoring Choices (an initiative of the Twin Cities Medical Society, Minnesota)

In Plain Language: A Glossary Of Terms For End-Of-Life Planning (New Hampshire Public Radio, 8-28-13)

Life Before Death (purchase and watch an award winning documentary series that asks the fundamental question underpinning our mortality)

National Healthcare Decisions Day (April 16, 2016 -- to inspire, educate and empower the public and providers about the importance of advance care planning)

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

The Ways We Approach Death (Sue Rochman, Cancer Today, Spring 2015) Cancer often requires making difficult decisions in the face of the uncertainty that accompanies most terminal cancer diagnoses. "Many of the estimated 590,000 people expected to die of cancer 
in the U.S. this year may, at some point, have to determine where they see themselves on this spectrum. Some will have lived with the disease for years. For others, the time from diagnosis to death will have been measured in only months or weeks. But all will have to make choices—about treatments, palliative care and, ultimately, how they hope to face their deaths."

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.

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.

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."

For the Very Old, a Dose of ‘Slow Medicine’ (Abigail Zuger, NY Times, 2-26-08). "For the very elderly...the usual tough love of modern medicine in all its hospital-based, medication-obsessed, high-tech impersonality may hurt more than it helps. In its place, doctors like Dennis McCullough, a family physician and geriatrician at Dartmouth Medical School, suggest “slow medicine” — as he puts it, “a family-centered, less expensive way.” "...medical care for the parent should favor the tried and true over the high tech. For instance, Dr. McCullough points out that instead of a yearly mammogram, a manual breast exam may suffice for the very old, and home tests for blood in the stool may replace the draining routine of a colonoscopy. The parent’s doctors should be nudged to justify flashy but exhausting diagnostic tests, and to constantly re-evaluate medication regimens. The high-blood-pressure pills that are life-saving at 75 may cause problems at 95, and paid companionship or a roster of visitors may prove to be antidepressants at least as effective as any drug. The pace of care should be slowed to a crawl. For doctors, that means starting medications at low doses and increasing them gradually. For children, that means learning not to panic and yell for an ambulance on every bad day." From a review of My Mother, Your Mother: Embracing "Slow Medicine," the Compassionate Approach to Caring for Your Aging Loved Ones by Dennis McCullough. “As valuable a resource as any I’ve found.” (Jane Gross, New York Times)
"
NY Times obit for Dennis McCullough, Pioneer of ‘Slow Medicine’ in End-of-Life Care After a personal experience being sidelines with an inherited autoimmune disease, Dr. McCullough "became a crusader for the cause, arguing for a pragmatic form of elder care that combines “cooperation, coordination and conservation of limited resources” in the patient’s best interest rather than inflicting “death by intensive care.” “The vast machinery of modern medicine, which can be heroically invoked to save a premature baby, when visited upon an equally vulnerable and failing great-grandmother, may not save her life so much as torturously and inhumanely complicate her dying,” he wrote in 2008 in the alumni magazine of the Geisel School of Medicine at Dartmouth College. In “My Mother, Your Mother,” he wrote: “Slow medicine is not a plan for getting ready to die. It is a plan for understanding, for caring, and for living well in the time that is left.” Dr. McCullough invoked his mother’s entreaty — “Why is dying so hard to do?” — in recalling her care during the five weeks in a hospice after being transferred there from a nursing home, where she had lived for 18 months.

Improving end-of-life care (a roundup of important pieces on the subject)

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.”

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."

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." For another account of a death from Lewy body dementia, see The beautiful, horrible death of Bill White (by Roy White).

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.

Death with Dignity: The Oregon Experience by Susan Hedlund (Association for Death Education and Counseling, or ADEC)

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)

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.

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.

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.

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.

Stories about death and dying

Advance directives, living wills, and other practical matters

Complex and difficult endings (Aid in dying, "right to die" legislation, suicide, and VSED (voluntarily stopping eating and drinking)