DYING, SURVIVING, AND AGING WITH GRACE

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End-of-life care and decision-making

Resources for when terminal or life-threatening illness requires decisions about what individuals, families, and professional caregivers should do.

• Return of the Hero (Peg Ackerman, Pulse, 5-24-13). A hero's natural death.

• The Art of Dying: A Mind-Body Transformation (PDF, Danielle Schroeder, Association for Death Education and Counseling, or ADEC)

• As End Nears, Cancer Patient Struggles With Cost of Long Term Care (Viji Sundaram, New American Media, 11-26-12)

• Compassion & Choices: Choice and Care at the End of Life.

• Cost of Dying, a MercuryNews.com series on end-of-life care. Reporter Lisa Krieger's story of her father's death brought an outpouring of response from readers. The occasional series that followed was written by her, with Dai Sugano helping on videos.
~Discovering a better way for final days ( updated 1-4-13)
~The cost of dying: It's hard to reject care even as costs soar (Lisa M. Kreiger, My Dad's Death, Mercury-News, 12-24-12)
~The cost of dying: Lessons learned (2-19-12)
~Cost of Dying: planning for a good death, from advance directive to talking with your family (6-24-12)
~Relief at the door: Palliative care improves lives and eases the cost of dying (10-9-12)
~Simple act of feeding poses painful choices (11-02-12)
~The challenges of at-home caregiving (Dai Sugano, Lisa M. Krieger, 12-02-12)
~Hospitals' end-of-life care differs (Some Bay Area hospitals combat death aggressively with expensive treatment, 12-14-12)
~Tips on how to fill out the AHCD and POLST, the end-of-life directive forms (4-17-12)
~Videos, The cost of dying (Dai Sugano and Lisa Krieger)

• A dying patient is not a battlefield (Theresa Brown, CNN Opinion, 8-31-10)

• Engage with Grace and the One Slide Project. To help ensure that all of us--and the people we care for--can end our lives in the same purposeful way we lived them. • Watch the Engage with Grace Story (Video, Za's Story) • Download the One Slide (PDF), which asks five basic questions:
* "On a scale of 1 to 5, where do you fall on this continuum (with 1 being "let me die without medical intervention" and 5 being "Don't give up on me no matter what, try any proven and unproven interventon possible").
* Is there were a choice, would you prefer to die at home, or in a hospital?
* Could a loved one correctly describe how you'd like to be treated in the case of a terminal illness?
* Is there someone you trust whom you've appointed to advocate on your behalf when the time is near?
* Have you completed any of the following: written a living will, appointed a health care power of attorney, or competed an advance directive?"

• End of Life and Palliative (California Healthcare Foundation). Toward the end of life, too many people receive ineffective, expensive medical treatments while their physical comfort, spiritual, and emotional needs are poorly addressed. CHCF is working on many projects to promote palliative care, to communicate patient preferences and care plans across care settings, and to reduce medical errors, avoidable hospitalizations, and unwanted care. Read more.

• 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.

• Kristie Miller's Letter of Intent (Kristie's letter is a good model for letting your family and friends know what you want done if you are ill, incapacitated, or facing the end of life)

• Nursing Home Inspect (ProPublica, journalism in the public interest -- find nursing home problems in your state). A piece from Charles Ornstein about what's new about the site.

• When to Refer to Hospice (PDF, Lisa Wayman, for ADEC)

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Ask Judy. Do you, or someone you care about, know someone who is dying? Each Wednesday Judy Bachrach answers your questions or offers advice to the dying and those who care about them.

Cost of Dying: Discovering a better way for final days (Lisa M. Kreiger, MercuryNews.com 12-30-12). Kreiger recommends taking charge of our lives by putting our wishes in writing, involving entire communities in commitment to planning, encouraging doctors to talk more frankly about choices, paying doctors to help patients decide what's best for them, avoiding costly care that won't prolong or improve life, offering better comfort care to patients in their final days, paying families to help at home instead of using hospitals, and broadening use of comfort care through Medicare and insurance.

Death Flicks. Celebrating Life Before Death in Short (and Shorter) Films. (Life Before Death site)

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.

Engage with Grace and the One Slide Project. To help ensure that all of us--and the people we care for--can end our lives in the same purposeful way we lived them. • Watch the Engage with Grace Story (Video, Za's Story) • Download the One Slide (PDF)

For me to have a good day, somebody must die (Del Stone, Open Salon, on writing about death for a newspaper website and feeling guilty about his own gallows humor)

Hospice care and palliative care (care to comfort, not to cure). What you should know about end-of-life care.

‘How Many of You Expect to Die?’ Jane Gross, The New Old Age (NY Times blog), 7-8-08. Custodial care, "can easily cost $100,000 a year and is not reimbursed by Medicare," a program created in 1965 when hardly anyone lived so long as people are living today. Gross quotes: “We’re doing this so badly because we’ve never been here before,” Dr. Lynn said. “But the care system we’ve got didn’t come down from the mountain. We made it up, and we can make it up better.”

How to Die by Joe Klein ( Time Magazine, June 11, 2012). Inside the story is called "The Long Goodbye." Klein writes about the dramatic improvement in his parents' care when they were moved to a facility with no incentives for unnecessary interventions. "For five months, I was my parents' death panel. And where the costly chaos of Medicare failed, a team of salaried doctors and nurses offered a better way." For subscribers only but you may be able to read it in the library.

Incapacitated, Alone and Treated to Death (Joseph Sacco, NY Times, 10-6-08)

In death, a promise for the future. As her world diminished, Elizabeth Uyehara signed her body over to researchers to help unravel the mystery of Lou Gehrig's disease. (Thomas Curwen, Los Angeles Times, 8-28-10, on the course of Uyehara's ALS and on what happens when organs are donated for science)

Last Words (famous last words, famous epitaphs, illuminations, famous farewells, and stories of last stands)

Let's talk about dying (Lillian B. Rubin, Salon.com, 12-27-12). "At 88 and ailing, I refuse to live at any cost. I only hope that when the time comes, I'll have the courage to act. ... At 88-going-on-89 and not in great health, what’s cowardly about my deciding to turn out the lights before putting my family through the same pain they’ve already lived through with their father and grandfather? What’s courageous about spending our children’s inheritance just so we can live one more month, one more year? Is it courage or cowardice to insist on staying alive at enormous social cost – 27.4 percent of the Medicare budget spent in the last year of life – while so many children in our nation go hungry and without medical care?"

Life After Life: A Novel by Jill McCorkle. Listen to Melissa Block interview her about the book on All Things Considered (NPR, 3-22-13)

A Life Worth Ending (Michael Wolff, NY Times Magazine, 5-20-12). The era of medical miracles has created a new phase of aging, as far from living as it is from dying. A son’s plea to let his mother go. "One of the most beautifully done, searing articles I've ever read about death in the age of medical intrusion," commented Robin Henig, and I agree.

Living Consciously, Dying Gracefully - A Journey with Cancer and Beyond by Nancy Manahan and Becky Bohan (how Diane Manahan chose to live life fully at the end and die at home)

Making Rounds with Oscar: The Extraordinary Gift of an Ordinary Cat by David Dosa (about a cat who senses death and stays to comfort the dying, but also about Alzheimer's and geriatric care and nursing homes and being there, at the end of life)

Months to Live. A New York Times series, examining the promises and challenges of extending, or ending, the lives of very ill patients. Includes Weighing Medical Costs of End-of-Life Care by Reed Abelson, 12-22-09; Fellow Inmates Ease Pain of Dying in Jail by John Leland, 10-17-09; Sisters Face Death With Dignity and Reverence by Jane Gross, 7-8-09 (a group of convent sisters rely on social networks rather than aggressive medical care);Fighting for a Last Chance at Life, by Amy Harmon, 5-16-09 (A family’s campaign for access to an unproven drug (Iplex, for ALS, or Lou Gehrig's disease) highlights the challenges terminally ill patients face in the search for treatment; and At the End, Offering Not a Cure but Comfort (Anemona Hartocollis, 8-20-09 on what palliative care specialists do during patients' last months).

My friend's dying tested my atheism (read or listen to Cerise Morris, Globe & Mail, Facts & Arguments, 9-13-10)

Note to My Patient (Sarah Stumbar, Pulse: Voices from the Heart of Medicine). A doctor's observations and feelings about the last stages of the life of a clearly terminal patient who wants everything done to save him--until the process grows more painful and he grows weaker.

The Quality of Death: Ranking end-of-life care across the world. According to this summary of the The Economist Intelligent Unit's white paper, the UK (where hospice originated) has led the way in developing its hospice care network and statutory involvement in end-of-life care. Indicators for the ranking include public awareness, the availability of training in palliative care, access to pain killers, and doctor- patient transparency. Canada and the U.S. tied for 9th place, after UK, Australia, New Zealand,Ireland, Belgium, Austria, Netherlands, and Germany. "Death and dying are stigmatised in some cultures" (including China's). Go to the Quality of Death Index site for the full report on this first-ever global study on the quality of death across 40 countries, commissioned by the Lien Foundation.

‘See you on the other side’ (Sara Morrison, Columbia Journalism Review, 5-1-13). Meet Jessica Lum, a terminally ill 25-year-old who chose to spend what little time she had practicing journalism

Stories of Hope, including Stories of organ recipients . You can also click on Donor Stories and Stories from Those Waiting. (James Redford Institute for Transplant Awareness)

Suddenly, They’re All Gone (Carol Mithers, The New Old Age, NY Times, 3-22-13) "While you’re caring for the old, you can’t believe what you’re called on to do and where you find yourself, can’t believe that your time with them will ever end. Then one day, it just does." The caregiving is over, but instead of feeling relieved, I feel worse.

Telling Stories (Rachel Hillestad, Huff Post 2-17-13). In which the author says goodbye to her dying grandmother by telling the stories the grandmother used to tell her.

The Ultimate Homework Assignment: Why We Need to Talk Openly About Death (Wendy R. Uhlman, My Turn, Newsweek, in Daily Beast, 10-2-08). We are often unprepared for the physical and logistical consequences of dying, but it doesn't have to be that way.

Waiting for death, alone and unafraid (Thomas Curwen, Los Angeles times, 2-28-09). Story about Edwin Shneidman, 90, who has written 20 books about death and says dying is easy. Living takes effort)

John West: "The Last Good Nights" (Diane Rehm radio show, 2-4-09). The author of The Last Goodnights: Assisting My Parents with Their Suicides tells why, and how, he assisted his parents with their suicides. He offers a first-hand account of the decision no child wants to face and explains why he followed through on his parent's desire to choose death with dignity.

When the Time Comes: Families with Aging Parents Share Their Struggles and Solutions by Paula Span. What will you do when you get the call that a loved one has had a heart attack or a stroke? Or when you realize that a family member is too frail to live alone, but too healthy for a nursing home?

STORE OWNERS AND BOOKSELLERS:

Get in touch if you want to stock this title. E-mail pat at patmcnees dot com (in the usual format).

This is a wonderful gift book for families experiencing a serious illness or a death in the family. Often the serious illness doesn't end in death, but elicits anxiety, sorrow, and thoughts about the possibility of death.

"For those who face the lonely reality of death, this book provides understanding and much-needed solace."
Claire Berman, author of Caring for Yourself While Caring for Your Aging Parents

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NAES bookstore, NIH Clinical Center, Bethesda (Building 10, Room B1L101, phone 301. 496.5272)