When My Time Comes: Conversations About Whether Those Who Are Dying Should Have the Right to Determine When Life Should End - Hardcover

Rehm, Diane

 
9780525654759: When My Time Comes: Conversations About Whether Those Who Are Dying Should Have the Right to Determine When Life Should End
Hardcover
ISBN 10: 0525654755 ISBN 13: 9780525654759
Verlag: Knopf, 2020

Inhaltsangabe

The renowned radio host and one of the most trusted voices in the nation candidly and compassionately addresses the hotly contested right-to-die movement, of which she is one of our most inspiring champions. The basis for the acclaimed PBS series.

Through interviews with terminally ill patients and their relatives, as well as physicians, ethicists, religious leaders, and representatives of both those who support and vigorously oppose this urgent movement, Rehm gives voice to a broad range of people personally linked to the realities of medical aid in dying. With characteristic evenhandedness, she provides the full context for this highly divisive issue and presents the fervent arguments—both for and against—that are propelling the current debate: Should we adopt laws allowing those who are dying to put an end to their suffering?

Featuring a deeply 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, reminding us that death, too, is an integral part of life.

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Über die Autorin bzw. den Autor

Diane Rehm hosted The Diane Rehm Show, distributed by NPR, from 1979 to 2016, when it had a listening audience of nearly three million. She now hosts the podcast On MyMind and The Diane Rehm Book Club for WAMU/NPR. She lives in Washington, D.C. www.dianerehm.org

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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...

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Verlag
Knopf
Erscheinungsdatum
2020
Sprache
Englisch
ISBN 10 
0525654755
ISBN 13 
9780525654759
Einband
Gebundene Ausgabe
Anzahl der Seiten
256
Kontakt zum Hersteller
Knopf
https://knopfdoubleday.com

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