The Life Matters Media Newswire aims to serve as a comprehensive portal of all news related to end of life decision making and care. We aggregate stories from other media outlets in one place- here, where you can access them easily. We also strive to produce original content covering stories we feel are receiving scant attention.
Two weeks after the physician-assisted suicide of 29-year-old Brittany Maynard, an Intelligence Squared debate in New York explored whether the policy is compatible with the doctor’s healing role. The argument opposing physician-assisted suicide laws was judged the winning one by an audience gathered at the Kaufman Music Center Thursday night.
Maynard moved to Oregon to take advantage of the state’s “Death with Dignity” law before cancer caused her increased suffering. She was diagnosed with an aggressive glioblastoma in January; Maynard and her husband, Dan Diaz, left their home in California because that state does not allow physicians to prescribe barbiturates for terminally ill adults wishing to end their lives.
Physician-assisted suicide is legal in four other U.S. states: Washington, Vermont, Montana and New Mexico. Roughly 750 people in Oregon have used the law since it was enacted in 1997 to obtain and consume the lethal drugs.
Arguing for legalization were philosopher Peter Singer, a Princeton University professor of bioethics, and Andrew Solomon, an award-winning writer and Columbia University professor of clinical psychology.
Those opposing physician-assisted suicide were Baroness Ilora Finlay, a palliative care physician and president of the British Medical Association, and Dr. Daniel Sulmasy, the associate director of the University of Chicago’s MacLean Center for Clinical Medical Ethics.
Solomon supported physician-assisted suicide that was both regulated and easily accessible for the dying.
“Aiding dying needs to be tightly regulated, as any life or death matter does, from driving to surgery,” he said. “But while no one should be pressed into assisted dying, no one should be categorically denied that right. It’s about dignity.”
The wish to end life may be a rational decision for some seriously ill adults, Solomon argued, because it ends mental and physical deterioration. It also allows the opportunity to find “great meaning” in final moments, he said.
“From a non-theological point of view, it can be argued that the meaning people attach to that stage of life is an artifact of the human imagination,” Solomon added. “It’s not about suicide. Suicide responds to personal disintegration while this precludes it.”
Solomon argued that comfort care, such as palliative medicine or hospice, does not negate the need for “Death with Dignity” laws.
“It’s nothing short of medical arrogance to say that palliative care and hospice can adequately deal with the end of every life,” he said. “Hospice, in fact, can impose an authoritarian, hard, paternalistic view that the hospice way of dying is the only way.”
In response, Sulmasy said he strives to help the seriously ill die with dignity. However, he does not “want to help you or your daughter or your uncle commit suicide.” He called physician-assisted suicide “bad medicine and bad policy.”
“We strongly support the right of patients to refuse treatments and believe physicians have a duty to treat pain and other symptoms even to the point of hastening death,” Sulmasy said. “But empowering physicians to assist patients with suicide is quite another matter. Striking at the heart not just of medical ethics, but of ethics itself, because the very idea of interpersonal ethics depends upon our mutual recognition of each other’s equal independent worth, the value that we have simply because we are fellow human beings.”
Sulmasy said the terminally ill must be reminded of their intrinsic dignity at a time of fierce doubt, especially in a society that prioritizes independence, youth and beauty.
The opposition was determined the winner after 22 percent of participating audience members said physician-assisted suicide should not be legalized, up from only 10 percent at the start of the debate. Sixty-seven percent of respondents at the end supported legalization, up only 2 percent.
“Don’t vote for this dangerous, dangerous law that actually deprives people of the possibility of having their dignity and having doctors who have to work to improve their quality of life,” Finlay said in closing remarks. “This law allows them to throw the towel in.”
Intelligence Squared U.S. is a non-partisan, nonprofit organization founded in 2006 that aims to provide constructive public discourse and reasoned analysis.
The young woman who moved to Oregon to take advantage of the state’s controversial physician-assisted suicide law ingested a lethal dose of doctor-prescribed barbiturates Sunday, sparking national debate on so-called “death with dignity” legislation.
Brittany Maynard, 29, was diagnosed with an aggressive glioblastoma brain tumor in January and was later given six months to live. Maynard and her husband, Dan Diaz, moved from California because that state does not allow terminally ill adults to end their lives with doctor-prescribed drugs.
“She died as she intended– peacefully in her bedroom, in the arms of her loved ones,” Sean Crowley, a spokesman for advocacy group Compassion & Choices, told The Associated Press. Maynard suffered increasingly frequent and longer seizures, severe head and neck pain, and other stroke-like symptoms, he said.
Working with Compassion & Choices, Maynard used her story to raise awareness about physician-assisted suicide and inspire other terminally ill Americans to end their lives on such terms.
“I don’t wake up every day and look at it, I know it’s in a safe spot,” Maynard said in a Compassion & Choices-produced video about her life-ending drugs. That video has been viewed more than 10 million times on YouTube. “I will pass peacefully with some music I like in the background.”
Gwen Fitzgerald, director of communications with Compassion & Choices, told Life Matters Media she believes younger people can identify with Maynard and learn from her decision.
“The attention has been incredible, very heartwarming that people have listened to what she had to say. People are trying to have a more open mind about her decision,” Fitzgerald said. “We tend to think about people who are dying as older. Obviously, a 29-year-old is a bit more a-typical, thank goodness, but her message is resonating with a broad range of audiences.”
Physician-assisted suicide is legal in four other states: Washington, Vermont, Montana and New Mexico. More than 750 people in Oregon have used the law to die.
Both the Oregon Death with Dignity Act (1994) and the Washington statute (2008) set safeguards to protect patients against coercion from physicians or from family members. Each patient must be of sound mind when requesting the prescription and be informed of palliative and hospice care options. Two doctors must confirm a diagnosis of terminal illness with no more than six months of life-expectancy.
Maynard’s decision and influence upset some religious and disability rights groups.
“We are saddened by the fact that this young woman gave up hope, and now our concern is for other people with terminal illnesses who may contemplate following her example,” Janet Morana, executive director of Priests for Life, said in a statement to the AP. “Brittany’s death was not a victory for a political cause. It was a tragedy, hastened by despair and aided by the culture of death invading our country.”
Dr. Ira Byock, a palliative care physician, said he believed Maynard was being “exploited” by Compassion & Choices and that palliative medicine could have aided in alleviating her suffering.
“Compassion & Choices actually sold to the public the legalization of physician-assisted suicide because of unremitting pain. But we can control pain,” he said on PBS Newshour. “What’s happening now is that over 85 percent of people who use Oregon’s law and end their life do so because of existential or emotional suffering, feeling of being a burden to their families, feeling the loss of the ability to enjoy life, feeling the loss of meaning.”
Byock, author of The Best Care Possible, said Maynard could have received “excellent whole person care and be assured of dying gently in her bed surrounded by her family.” Palliative medicine is provided to the terminally and seriously ill to help treat symptoms and side-effects of disease. The goal of palliative care is not cure.
But Craig Klugman, chair of DePaul University’s Department of Health Sciences and a bioethicist, told LMM many terminally ill patients wish to have control over their final days and die only when they feel ready.
“As the Oregon experience has shown, for many patients, assisted suicide is about having a feeling of control– since a large percent of individuals who receive a prescription for their death do not take it,” he said. “The decision is a very personal one that needs to take into account not just the patient but also their family. That this was, controversially, the right decision for Mrs. Maynard does not mean it is the right decision for anyone else.”
Klugman said the assumption of many medical professionals that palliative care and other comfort treatments negate the need for “death with dignity” laws is based in belief that suicide is immoral.
“Sudden, unplanned suicide by healthy people is tragic and leaves survivors with questions and often guilt that they could have or should have done more. But that is not the case here,” he added. “For Mrs. Maynard, even though palliative care could help with her acute symptoms, it could not assist with her existential ones— watching her lose control over her body and mind, the loss of what she felt was her dignity as others had to take on more and more of her daily activities of living, and living with the knowledge that for her, this diminishment was not a life she wanted to experience.”
Peg Sandeen, executive director of the Death with Dignity National Center in Oregon, told LMM the national attention on Maynard’s decision reflects increasing support among Americans for “death with dignity” legislation.
“I am saddened by the tragedy of this young woman’s death, but I am thankful the state of Oregon offered her options at the end of her life,” she said. “When you talk to average Americans, between 60 to 70 percent of people say ‘yes,’ ‘death with dignity’ should be legal. When you have a compelling story, when you show a young family with a member dying, suddenly an issue that has broad support becomes something that everyone is engaged in.”
Caitlin Doughty, acclaimed author of Smoke Gets In Your Eyes: and Other Lessons from the Crematory, wants to encourage more open discussion on a taboo subject: death and decay. In 2011, Doughty founded The Order of the Good Death, a group of funeral industry professionals, academics and artists exploring ways to better familiarize America’s “death phobic” society with mortality and its meaning.
Doughty, a trained mortician, spoke with Life Matters Media about her memoir, burial wishes and experiences working in a crematory.
What inspired you to write Smoke Gets In Your Eyes?
I worked in a crematory, and it was so fascinating, the things that I saw and the things that other people didn’t see, because of the way that death works right now in America. It’s a hidden culture and a culture of silence– how we deal with death. My policy is always that we’re better when we know what’s going on, when we know the facts.
What goes on behind the scenes in a crematory?
A lot of crematories now are somewhat industrial environments, because things get centralized. There’s a single point that all the bodies will go to, whether it’s a centralized embalming facility or centralized cremation facility.
It’s completely fascinating. It’s one of the most fascinating places that you can go to, especially in a world where we don’t see a lot of death. It’s new everyday. Each body is different, each case is different, each family is different.
There’s a lot of care for the body where I worked, and I certainly tried to do that. But that doesn’t mean that there’s not a high volume. If you are concerned about it, ask to see the facility, ask for a witness cremation.
Are cremations considered completely natural and ‘green’?
No. The only really natural way to care for a body is just to put it straight into the ground. Dig a whole with a shovel and put the body right on in with a shroud. But cremation does use a lot of natural gas and releases mercury into the environment. The mercury comes from dental fillings.
Are ‘green’ burials becoming more common?
They absolutely are. I think it’s both environmental and a sense of “why am I cutting myself off from the earth? Why am I putting myself in a casket and then in a steel vault?” It’s also a cost issue.
How do you wish to be buried?
I would like to be naturally buried. Eventually, I would love to be left out for animals, but that’s not legal right now. I already have my cemetery picked out in Marin in California. Straight in the ground, please.
Why do you wish to be eaten by wild animals?
I think that metaphorically, it works very well for me. The idea of going back into the life cycle in a very basic way. Have it be fair play. I eat animals now, and I think that they should get to eat me, because I am an animal, too.
Why do you believe end of life discussions are taboo?
At a certain point in the early 20th century, both dying, the process of dying, and death itself, the dead body, got taken out of the home and given to professionals. Since that time, the cultural inheritance that we have is “don’t talk about death. It’s for the professionals, not for you.
Are you surprised by the positive reactions to your book?
The book has done pretty well, which shows that there is a market for it. People want to know about their death, they want to know the facts and be more comfortable with it.
In order to provide better medical care to the seriously ill, physicians must ask patients about their goals of care and end of life wishes, said Dr. Atul Gawande, bestselling author of Being Mortal: Medicine and What Matters in the End.
Gawande, a general surgeon at Brigham and Women’s Hospital in Boston, addressed hundreds of medical students and physicians at the University of Chicago Medical School on Thursday. He asked that they listen to patients’ concerns and recognize that prolonging life may not always be the best medical option for the dying.
“We have failed to recognize in medicine and society that people have priorities besides just living longer, that they have aims and goals,” he said. “The most effective way to find peoples’ priorities is to ask. But we don’t ask.” In the hospital setting, the physician often speaks more than the patient, Gawande added.
Some terminally ill patients wish to remain mobile or mentally competent enough to walk their dog or eat at a favorite restaurant; others wish for enough time to say goodbye to loved ones.
“At the end of life, people want to still participate, have a role and make memories,” he said. Because aggressive, often unnecessary, treatments can stymie mobility and cognitive ability, Gawande recommends that doctors familiarize themselves with the benefits of hospice and palliative medicine.
We have failed to recognize in medicine and society that people have priorities besides just living longer, that they have aims and goals
Gawande urged physicians and nurses to ask their patients if they truly understand the nature of their disease. Only with this understanding can a physician begin to provide guidance, he added. Patients and families would be more comfortable enrolling in earlier palliative treatments if they are told about the benefits soon after diagnosis.
Throughout his new book, Being Mortal, Gawande tackles the negative impacts of some relatively new life-prolonging treatments on the seriously ill.
“I never expected that among the most meaningful experiences I’d have as a doctor — and, really, as a human being — would come from helping others deal with what medicine cannot do as well as what it can,” he writes.
Unfortunately, many medical students avoid pursuing careers in geriatrics – care for the aged and ill – often due to the lower pay and the difficult, often emotional, nature of the work.
“Geriatrics is the lowest paying field in the profession. Ninety-seven percent of medical students are not taught about it, but I think it’s beginning to change,” Gawande told Life Matters Media. “End of life discussions are anxiety provoking for everybody involved, partly because they think it’s about giving up, but it’s not. It’s about ensuring we fight for a life worth living.”
David Axelrod, director of the Institute of Politics at the University of Chicago and former Senior Advisor to President Barack Obama, said he appreciated the presentation on a personal level.
“I think Gawande is one of the great thinkers on these issues and how our modern health system works and doesn’t work,” Axelrod told LMM. “I was particularly moved by it, because I just lost my mother earlier this year. A lot of the issues he discussed are what we dealt with.”
Evangelical and mainline Protestants need encouragement from medical providers within their own churches to better engage in comprehensive end of life planning, said the Rev. Charles A. Orme-Rogers at the Wisconsin Medical Society’s annual conference.
“When end of life discussions take place in a comfortable space, like a church, people are more trusting,” Rogers, an Episcopalian, told the crowd of nurses and doctors gathered Wednesday in Madison.
In 2013, Rogers helped launch the Association of Spiritual Caregivers Faith Ambassador Program, a fledgling effort to create educational materials for the incremental introduction of advance care planning conversations within faith communities. A group of 17 “faith ambassadors” tour the state’s capital to encourage families to make their healthcare wishes known through thoughtful dialogue with each other.
“Before each meeting, I need to check my bias at the door,” Rogers said. “We need to be nonjudgmental in how we present end of life materials to individuals of various faiths.”
Faith ambassadors have visited 20 faith and community centers in 2014. More than 260 have attended, Rogers said; about 60 percent signed or updated their current Power of Attorney for Healthcare (POAHC) directive.
The program is backed by the advance care planning initiative “Honoring Choices Wisconsin.” The statewide advocacy and education project is based on Respecting Choices, a program developed at Gundersen Lutheran Health System in LaCrosse, Wisconsin. Respecting Choices projects are also underway across Minnesota, northern Florida, Virginia and the Kaiser Permanente health system.
“We need to let the person being facilitated lead the dance,” Rogers said. “They need to unpack their process and also ask their faith leaders and doctors questions.”
An advance health care directive may take the form of a living will, power of attorney or the Five Wishes collection. The overall purpose of such forms is to help ensure one’s end of life wishes are executed in case of serious illness or incapacity.
In 2009, the Journal of the American Medical Association published a study linking religion to longer and more intense end of life treatment, even when suffering ensues. Faith was cited as the second most important factor influencing treatment decisions, after oncologist recommendations.
However, a report issued last month by the Institute of Medicine called for such public engagement strategies to address informed decision-making. According to findings published in Dying in America, not only do most Americans lack knowledge about end of life care choices, but community leaders “have not fully utilized strategies to make that knowledge available, meaningful, and relevant across diverse population groups.”
The Institute of Medicine report cited the present as an opportune time to normalize conversations about death and dying. It pointed to the social trends of health consumers’ motivation to pursue high-quality care, a growing willingness to share stories about end of life care experience that resonate across diverse populations, and engaged leadership within local communities.
- Advance Care Planning
- Hospice and Palliative Care
- Life Choices
- Politics and Law
- Society and Culture
- Treatments and Illness
- Health Care
- Reuters Health: LMM Reports
- Voices in Bioethics: LMM Commentary
- Debunking Palliative Care Myths
- Islam And Medicine: Differing Views On Brain Death
- Intelligence Squared Debate: Legalize Assisted Suicide?
- POLST Pioneer Susan Tolle: How Care Preferences May Become “For Tonight”
- Chicago End-Of-Life Care Coalition Hosts Fall Benefit
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- December 2013
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Daniel Gaitan serves as a content producer...More