When my time comes : conversations about whether those who are dying should have the right to determine when life should end

Title:

Author:

Rehm, Diane, author, interviewer.

Summary:

"What do you want when you are near the end of life? All too often, Rehm argues, this question goes unaddressed or unresolved, whether from uncertainty, from fear, or from a lack of awareness of the resources that are at hand for helping the terminally ill decide for themselves what they want to do. She argues that every human being deserves to die with dignity, and she points to the recent legislation in six states and Washington, D.C., providing citizens with the right to choose end-of-life medical aid. She examines the current debates among numerous state legislatures about whether or not to adopt similar laws. Through interviews with terminally ill patients, physicians, ethicists, spouses, and relatives (and including voices vigorously opposed to the movement), Rehm tells the moving stories of those who are personally linked to the realities of Medical Aid in Dying, including the family of Brittany Maynard, who became a public face of the movement when she chose to end her life in Portland, Oregon, in 2014. A documentary film featuring many of the interviews Rehm conducted will air at the time of the book's publication. When My Time Comes is a corrective to misconceptions and misrepresentations of end-of-life care; it is a call to action; and it is an attempt to heal and soothe our hearts, reminding us that death, too, is an integral part of life."-- Provided by publisher.

General Note:

Unabridged.

Edition:

Large print edition.

Contents:

Barbara Coombs Lee, President of Compassion and Choices -- Lori Wallace Pushinaitis, a terminal cancer patient, and Dr. Catherine Sonquist Forest, Lori's end-of-life care doctor -- Christina Puchalski, board certified palliative care physician -- Dan Diaz, widower of Brittany Maynard -- Martha Kay Nelson, Director of Spiritual Care at Mission Hospice -- Heather Massey, death educator -- The Reverend William Lamar, African Methodist Episcopal Church in Washington, D.C. -- Dr. Roger Kligler, a supporter of MAID -- Stella Dawson-Klein, widow of Mary Klein -- Dr. Katalin Roth, Professor of Medicine at George Washington University -- Mary Cheh, Professor of Constitutional Law and member of the D.C. City Council -- Eric Luedtke, Delegate from the Maryland House of Delegates -- Alexa Fraser, a Death With Dignity supporter -- Father John Tuohey, a Roman Catholic priest -- Bill Roberts, a terminal cancer patient and friend of the author's -- Dr. Lonny Shavelson, Director of Bay Area End-of-Life Options -- Deborah Gatzek Kratter, a patient of Dr. Shavelson's -- Dr. David Grube, National Medical Director of Compassion and Choices -- Four students who attended Dr. Grube's lecture -- Dr. William Toffler, National Director, Physicians for Compassionate Care; Professor Emeritus, Oregon Health and Sciences Univ. -- Allan Christopher Carmichael, widower of Terry Stein, and Dr. Stephanie Marquet, Terry's palliative care physician -- The Honorable Selwa "Lucky" Roosevelt, Chief of Protocol in the Reagan administration -- Benjamin Zide, the author's grandson.

Physical Description:

373 pages (large print) ; 22 cm

Genre:

Subject Term:

Terminal care -- Moral and ethical aspects.

Terminally ill -- Interviews.

Physicians -- Interviews.

Publisher:

Wheeler Publishing, a part of Gale, a Cengage Company,

Publication Date:

2021

2020

ISBN:

9781432881092

Publication Information:

[Waterville, Maine] : Wheeler Publishing, a part of Gale, a Cengage Company, 2021.

Call Number:

LP 179.7 REHM

Holds: Copies:

Available:*

Item Barcode	Collection	Call Number	Status	Item Holds
33607003516096	Large Print Nonfiction	179.7 REHM	Searching... Unknown	Searching... Unavailable

Bound With These Titles

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Summary

From Diane Rehm, renowned radio host--one of the most trusted voices in the nation--and best-selling author: a book of candor and compassion, addressing the urgent, hotly contested cause of the Right-to-Die movement, of which she is one of our most inspiring champions.

Soon to be a public television documentary of the same name, featuring the author.

Through interviews with terminally ill patients, and with physicians, ethicists, spouses, relatives, and representatives of those who vigorously oppose the movement, Rehm gives voice to a broad range of people who are personally linked to the realities of medical aid in dying. The book presents the fervent arguments--both for and against--that are propelling the current debates across the nation about whether to adopt laws allowing those who are dying to put an end to their suffering. With characteristic even-handedness, Rehm skillfully shows both sides of the argument, providing the full context for this highly divisive issue.

With a highly personal foreword by John Grisham, When My Time Comes is a response to many misconceptions and misrepresentations of end-of-life care; it is a call to action--and to conscience--and it is an attempt to heal and soothe our hearts, reminding us that death, too, is an integral part of life.

Reviews (2)

Publisher's Weekly Review

Former NPR host Rehm talks with individuals in support of and opposed to the right to die movement in this moving and candid interview collection. Rehm lost her husband to Parkinson's disease and writes eloquently of the agony he experienced in his final days. Her interview subjects include doctors, palliative caregivers, the terminally ill, and those whose loved ones have succumbed to terminal illnesses. She speaks to a hospice spiritual care director about how to discuss end-of-life care with one's family. Dan Diaz, whose cancer-stricken wife, Brittany Maynard, gained media attention in 2014 when she moved from California to Oregon to take advantage of the state's Death with Dignity Act, recounts the story of being by her side when she died. While most interview subjects are in favor of the right to die, Rehm interviews a doctor who suggests that patients seeking death might be in "spiritual or existential distress," in which case counseling is in order, and speaks with a Roman Catholic priest about the Church's official position against medical aid in dying. Rehm and her subjects offer practical information, nuanced perspectives, and poignant stories of peaceful final moments achieved through end-of-life care. Readers faced with similar decisions will cherish this thoughtful account. (Feb.)

Library Journal Review

Published as a companion work to a film documentary, this collection of enlightening interviews by former NPR host Rehm (The Diane Rehm Show) provides insight into end-of-life care in the United States. Like Rehm herself, who movingly recounts her husband's experiences at the end of his life, interview subjects share personal values and beliefs on the subject of dying well. These open conversations with patients and their relatives, along with advocates, doctors, caregivers, and spiritual counselors include profound arguments both for and against medical assistance in dying. Rehm also touches on specific information regarding state-based eligibility rules. Readers are introduced to organizations and support groups that can assist with discussion, preparation, decision making, and navigating legal paperwork. The work concludes with an interview with Rehm's grandson, which provides a model for establishing end-of-life instructions for when the time comes. For research purposes, an index would have been a useful addition. VERDICT Rehm definitively accomplishes her goal of spurring conversation about end-of-life care with these balanced, thoughtful discussions of a difficult but vital topic. [See Prepub Alert, 8/12/19.]--Theresa Muraski, Univ. of Wisconsin-Stevens Point Lib.

Excerpts

Barbara Coombs Lee PRESIDENT, COMPASSION & CHOICES Barbara Coombs Lee began her medical career as a candy striper at St. Joseph Hospital in Joliet, Illinois. As she writes in her book, Finish Strong: Putting Your Priorities First at Life's End, she's been working in health care for almost fifty-five years, specializing in intensive care and emergency rooms, caring for very ill patients, helping them stay alive. However, she came to believe in an individual's right to finish life on his or her own terms. She remembers the day: May 19, 1994, the day Jacqueline Kennedy Onassis died of non-Hodgkin's lymphoma. She writes: "Her son, John F. Kennedy, Jr., emerged from her apartment that morning and comforted the crowd that stood grieving on Fifth Avenue. He said, 'My mother died surrounded by her friends and her family and her books. She did it in her own way and on her own terms. And we all feel lucky for that.' " Barbara said that moment motivated her to find a way to avert the suffering that so many undergo at the end of life. She became a public advocate, gaining admission to the Oregon State Bar, and ultimately joining the staff of the Oregon Senate Healthcare and Bioethics Committee. In 1994, the year of her conversion, she became one of the three chief petitioners who filed the Oregon Death with Dignity Act as a citizens' initiative. She writes, "I spent the next fourteen years defending the resulting Death with Dignity law from efforts to undo it in every governmental arena--legislative, executive and judicial." Oregon's law had been embattled until 2006, when the U.S. Supreme Court finally ruled that states have the authority to adopt medical aid in dying as part of the legitimate practice of medicine. On February 12, 2019, I interviewed Barbara for my podcast, On My Mind. I began by asking her about the lessons she had learned from caring for people who had not died well, who had had unwanted treatments and been kept alive against their wishes. "The technology that medicine wields, and of which we are so proud, is not necessarily in an individual's best interest. Only individuals can review their lives, their beliefs, their values, and decide what is best for them. It took many more years and many more bedside experiences in intensive care units, emergency rooms, nursing homes, et cetera, before I had what you might call a broader understanding of people's end-of-life journey. I learned that it might be different for each of us. It's as though medicine has gotten ahead of human desire. There are so many ways to keep us alive, and yet the incredibly sophisticated means of keeping people alive don't always take into account what people themselves want." Barbara calls dying in America a "terrible mess." She says, "We torture people with treatments that are futile and enormously burdensome, robbing them of the precious quality of their remaining days, robbing them of the time they would otherwise want to devote to the priorities of their lives, the legacy of memories they would like to leave their loved ones. We concentrate on extending the absolute duration of life irrespective of how dismal and degraded and burdensome the quality of that life might be. Something like 30 to 40 percent of people have an ICU admission in the last thirty days of life. Nine out of ten people with dementia--profound dementia--have some sort of invasive procedure. In the last month of life, we are replacing humanity with technology." Diane: Tell the story of Maria, an eighty-two-year-old who has do not resuscitate, or DNR, orders. What happened to her? Barbara: She had her advance directive. She made sure everyone had the directive and knew she did not want to have any resuscitation efforts applied when she was admitted to the hospital emergency room for some abdominal pain. She had done what we're supposed to do, and she did it in spades. She wanted to make sure that everyone in the hospital knew about her request, and that if some calamity happened during her hospitalization, she would not have to undergo resuscitation efforts. And then, one night, very peacefully, her heart stopped and her advance directive was just ignored. She was given CPR entirely against the likelihood that she would be revived. She was revived and taken to the ICU, and her son and grandson were told what had happened to her. And they visited her in the ICU, and she was devastated. She was alert. She was angry. She couldn't speak because there were tubes in her mouth and down her throat. But she knew she had been violated. D:But how could this happen? If she went into the hospital with an advance directive, why was it ignored? How frequently does that happen? B:The sad truth, Diane, is that advance directives are often ignored, particularly in situations like this, when a sudden catastrophe occurs. Advance directives on their face apply in two circumstances. If a person is terminally ill or permanently unconscious, that's when medical providers are told to honor the wishes of the patient. Well, physicians are loath to say that someone is "terminally ill" or "permanently unconscious." I would venture to say that even if Maria's physicians were aware there was an advance directive and a desire to refuse CPR, they would have ignored it anyway, because in their minds, she's not terminally ill. They think they're going to bring her back! She's just having a little spell, and they can bring her around. In legal terms, the conditions of terminal illness or permanent unconsciousness in her advance directive have not been met. D:That makes me wonder whether if something were to happen to me--if I'm having a heart attack or a stroke--I would really want to go to a hospital. B:There's a balance. If I see someone drop down on the sidewalk in front of me and her heart has stopped, I wouldn't consult her advance directive either. I'd give her a good thump and see if I can restart her heart. But in very short order, someone needs to inquire what the person's desires are. Would he or she want a vigorous resuscitation effort? And for how long? The atrocity that was committed on Maria was not that she got one shock, but that she was held captive in the ICU and they refused to take her off these machines and take out the tubes, even when she communicated by hand squeezes. They did not honor her specific instruction. D:Had Maria been in a religiously affiliated hospital? B:No. I think it's more indicative of the prevailing mentality and the desire of the medical community to not give up too soon. The determination to bring her back. Compare Maria's story with Lorraine Bayless, the woman who had the "good fortune" to die on the cafeteria floor of her independent living facility. She was not subjected to CPR because it was not the facility's policy, but someone called 911. And once 911 was involved, all the death aversion in our society and our nation swept full force into the cafeteria. The 911 operator just would not let go. I think the woman was about eighty-five, and she'd had a sudden massive stroke. She was very close to death. And the people around her wanted someone to breathe into her mouth or get paddles. D:As I recall from your book, the care facility in which the woman resided was prohibited from doing anything to actively try to resuscitate. Articles then appeared in The New York Times and elsewhere calling the institution cruel because it did not lift a finger to resuscitate. B:Right. You know, I wish I could pull up some of those news clips where very young journalists on the evening news were opining that this woman had been terribly abused, that in spite of her advanced age she would've been likely to bounce back from a total collapse of her cerebral vascular and cardiovascular systems and go on to lead a high-quality life for many years, and that the institution depriving her of this opportunity was criminal. Her daughters came to the situation with much more common sense and an intimate knowledge of their mother and her desires. They said, "We are not litigious people. Moreover, our mom knew what she wanted. She wanted to be in an institution where she could die peacefully. And so we won't be suing anyone for granting her wish." D:What exactly are you advising people to do, so that they can "finish strong"? B:Finish in a way that aligns with your priorities. Make sure it is a fitting closure to your values and beliefs. My book is really not a book about dying. It's a book about living. It's a book about living fully and not being abducted onto a conveyor belt of medical technology that leads to a robbing of your priorities, and a displacement of the things that you value most at the end of life. Live your last precious months or weeks, or even years, according to the things that give you the most joy. D:I believe that one of the critical elements of "finishing strong" is having a conversation with children, parents, loved ones, and friends as to exactly what you want. There are so many people reluctant to raise the subject. It's the last taboo. We don't talk about death. I remember speaking in a church in Massachusetts. There were about three or four hundred people in the congregation, and I began by saying, "Please raise your hand if you plan not to die." And of course there was great giggling in the audience, but it was an uncomfortable giggling. People just don't want to raise the subject. How do we get past that? B:I would say it's not just one conversation but many conversations, an ongoing dialogue. That includes recording your values and priorities in a video or on your iPhone or something, so that people will remember. It's hard to have a conversation about what I want because there are so many variables, depending on what situation I find myself in. But what will guide people is what I cherish. I think the most important thing we can tell our loved ones is "If you are asked to make decisions when I cannot, know this above all: My values. Know what I hold to be most sacred in my life that I would never want to give up. And if I cannot reclaim that, if the likelihood of my reclaiming that in the future is very low, then act accordingly." Now there's a lot of emphasis on when these decisions are made for me by someone else. But the truth of the matter is that most decisions that get us in trouble, that put us on the conveyor belt of futile and burdensome care, that rob us of the quality of our life, we make ourselves when we are conscious and capable of making health-care decisions. But all too often, we just don't have enough information to make those decisions in a smart way. We don't understand what we're getting into, and we don't understand that we can hop off the conveyor belt at some time in the future. So we must learn to ask questions. We must learn to ask, when any test or treatment is proposed, how efficacious it is, how many people in my situation are cured by this treatment, how many have had their lives extended by this treatment. Zero to 2 percent. Extended by how much? Well, by three to four weeks. At what cost? What are the burdens of this treatment? How much time does it take? How will I feel afterward? Will I be able to do the things I enjoy? We make those decisions, we sign the consent form and say, "Yes, sign me up to do this treatment." But we don't realize that it may be futile and it may be robbing us of our quality of life and our precious time. D:Should right to die laws apply to people with Alzheimer's disease, or is that a step too far? B:Medical aid in dying is hard to apply to people with Alzheimer's, because it's hard to imagine delivering a life-ending medication to people who don't know that they're taking it, or aren't physically capable of taking it. I don't think that the American people are likely to adopt a policy like that in the near future. But I would say this: The fact that medical aid in dying does not apply to people with dementia or Alzheimer's is not the real problem. The real problem is all the things we currently do to delay the natural process of dying. My book speaks honestly about how one might make a plan to escape dementia--not endure and fail to cope with dementia but escape it. If a threshold of unacceptable deterioration is approaching, there are so many ways to invite an intended death without resorting to some lethal medication that is delivered by a third party. Most people with advanced dementia have some kind of invasive procedure to keep them alive, in most cases not something they would have chosen. We're not allowing nature to take its course. If there is an infection, we treat it. If there is pneumonia, we treat it. If people aren't drinking and they're dehydrated, we start IVs and we rehydrate them. We might spend a year sustaining the bodily functions that would normally decline and stop altogether if we allowed the disease to take its natural course. I say there's no shame, there's no guilt in having and articulating an intention to die. If I am not actually living, but only existing, I want my loved ones to act on that intention, and if I am still capable, I will act on that intention, if I see this threshold approaching. D:I spoke clearly to my grandson while he recorded me on a cell phone, to let him and others know my wish if I begin to feel the effects and recognize the effects of dementia coming on. Thus I have it on record for family that I do not wish to survive the end stages of dementia. It's so important, as you say, to think about what happens down the line; not just for today, but as time goes on. B:Good for you, Diane. That's brilliant. We're working right now on a tool at Compassion & Choices called the Dementia Decoder that will help people anticipate what may be in store for them. Help people pinpoint the threshold they do not wish to cross and help make it very clear to others around them that yes, they want this information, they want to know when that threshold is approaching and then want to be able to implement steps so that the progression doesn't continue beyond that threshold. It takes a clear-eyed determination, and I know you have it. It takes a loving family. And it takes some thought and some articulation so that people are armed with the knowledge they need and the tools to act on it when that threshold approaches. Excerpted from When My Time Comes: Conversations about Whether Those Who Are Dying Should Have the Right to Determine When Life Should End by Diane Rehm All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.