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.
Muslim physicians, bioethicists and faith leaders must convene and debate brain death to better understand its significance and offer guidance to patients and families facing the end of life, said Dr. Aasim Padela, an emergency physician and director of the University of Chicago’s Initiative on Islam and Medicine. Padela addressed differing Islamic beliefs regarding brain death at the Dorothy J. MacLean Fellows Conference for Clinical Medical Ethics.
Padela began by explaining how Islamic bioethics concepts are shaped from a multitude of sources, including divine ascription to what is considered “good” and “evil,” textual revelation from the Qur’an, revelation from the Sunnah– the Prophet Muhammad’s statements, actions and tacit approvals– and Islamic moral theology, Usal al-fiqh.
In the Islamic tradition, a dead body should be treated with dignity and care. “Breaking bones of the dead is akin to breaking bones of the living,” Padela said. “Body is more than an empty shell and is the bearer of rights and respect.”
Because brain death is not total brain failure, beliefs about its significance vary amongst Muslim physicians and ethicists– a brain dead patient’s pituitary gland or hypothalamus may continue to function. The debate about brain death emerged about 25 years ago, when advances in medical technologies allowed physicians to artificially prolong life longer than ever before.
According to a national survey of 250 American Muslim physicians conducted by Padela, 54 percent did not consider brain death to be “true death.” Seventy percent said they are psychologically troubled by withdrawing life support from brain dead patients.
However, many respondents seldom discussed or shared their beliefs with other Muslim medical professionals. Fifty-five percent of participants said they never or rarely read Islamic bioethics books. Nearly 80 percent said they never or rarely look to Islamic medical, or fiqh, academy verdicts.
The Islamic Fiqh Academy has ruled brain death as a form of legal death if all vital functions of the brain cease irreversibly, and the brain has started to degenerate. Some proponents argue brain death is “death” because it indicates the departure of the soul, and it is the soul that animates the body.
Others believe brain death is not “death” because the brain is “not tied to the soul” or “privileged over any other organ.”
“Some juridical councils such as the Organization of Islamic Conferences’ Islamic Fiqh Academy (OIC-IFA) equate brain death with cardiopulmonary death, while others such as the Islamic Organization of Medical Sciences (IOMS) analogize brain death to an intermediate state between life and death. Still, other councils have repudiated the notion entirely,” Padela wrote in a 2013 study exploring end of life beliefs amongst Muslims. “For those searching for ‘Islamically-sanctioned’ responses that can inform their practice, both the OIC-IFA and IOMS verdicts have palpable gaps in their assessments and remain clinically ambiguous.”
Padela called for renewed interdisciplinary discourse exploring Islamic beliefs about whole-brain and brain-stem death, cardiopulmonary, or traditional, death and the clinical responsibilities of physicians caring for Muslim patients.
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.
Nearly 100 medical professionals, storytellers and patient advocates attended the Chicago End-of-Life Care Coalition’s annual fall benefit, an effort that raised funds supporting the organization’s educational programming throughout the Chicago area. The event, “An Afternoon of Stories,” was presented with Stories on Stage, one of the city’s only live, dramatic short story reading series.
One-by-one, performers shared emotional, often comical, stories about death and dying as guests sipped craft beers at Revolution Brewing in Chicago’s Logan Square neighborhood.
Dr. Charles Rhee, an assistant professor of medicine at the University of Chicago’s Center for Geriatrics and Palliative Medicine, said he appreciated the nonprofit organization’s commitment to educating the public about the importance of end of life conversations and advance care planning.
“It’s amazing to see such a gathering of people united for such a cause, and the performances really highlighting the joys and terrors of the end of life,” he said. “I think end of life discussions are taboo in America because of our health care system. We talk so much about cures and extending life as long as possible, and we forget about death. The most natural things in the world are birth and death.”
Rhee said his favorite story of the night was “Lilacs” performed by Brendan Kelly, partly because of its focus on HIV/AIDS and its “dark and powerful” tone. The script sampled fiction from acclaimed author and activist Dr. Abraham Verghese.
Rachael Telleen, project director for POLST Illinois, said she was encouraged by the diversity of the attendees.
“Seeing people of different ages, seeing people with an interest in end of life, having so many supporters is fabulous,” she said. “I hope the CECC helps the POLST form become more common and accepted, especially as people keep aging.”
POLST is more detailed than conventional living wills or advance directives- these medical orders extend patients the freedom to indicate preferences regarding resuscitation, intubation, intravenous antibiotics and feeding tubes, among other things. POLST is an updated version of Illinois Department of Health Uniform DNR Advance Directive and is intended only for the terminally ill.
The evening was sponsored by several end of life care organizations, including Midwest CareCenter, Rainbow Hospice and Journeycare.
“I love the fact that people are willing to come and hear stories about death and dying,” said Ronette McCarthy, legal counsel for Elements, the cremation company and a member of the CECC’s board of directors. “I look at the CECC as one of the only collaborative end of life groups in the Chicago area. It consists of physicians, attorneys, chaplains, doctors and social workers.”
Life Matters Media founders Dr. Mary F. Mulcahy and Randi Belisomo are members of the CECC.
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.”
Palliative medicine for the seriously ill should be covered by all payers and provided by all health organizations, said Dr. Diane Meier, director of the Center to Advance Palliative Care, during a presentation exploring new findings about dying in America.
Meier addressed a widely circulated report from the Institute of Medicine (IOM) calling for new public engagement strategies to foster informed decision-making. According to Dying in America, not only do most Americans lack basic understanding 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.”
Meier, a member of the IOM, helped develop the institute’s five key reccomendations: more person-centered, family-oriented palliative care; better doctor-patient communication and advance care planning; professional education and development; better policies and payment systems; and more public education and engagement.
The report cited the present as the best time to help normalize conversations about death and dying, partly because millions of aging baby boomers will require such conversations in the near-future. It also pointed to the social trends of health consumers’ willingness to pursue high-quality care, a growing urge to share stories about end of life care experience that resonate across diverse populations and engaged leadership within local communities.
“When the IOM says that something should be done, there is enormous imprimatur, legitimacy and influence on the zeitgeist about what’s acceptable to talk about,” Meier said. The IOM acts under the National Academy of Sciences through its congressional charter as advisor to the federal government. It is nonpartisan and funded by a network of donors, endowments and contracts.
Meier acknowledged the difficult nature of changing federal policies and payment systems involving end of life care, partly because of political polarization surrounding the Affordable Care Act– the health reform law signed by President Obama in 2010 and recently upheld by the Supreme Court.
Thirty percent of likely voters when polled said the law allows government “death panels” to make decisions about patients’ end of life care, a theory discredited by most medical professionals.
“We have a real challenge to improving accurate information and understanding on the part of the public about what palliative care is about and what it’s not,” she added. Palliative medicine is usually provided only to the terminally ill to help treat symptoms and side-effects of disease and aggressive treatments. The goal is not cure.
Meier mentioned a handful of national campaigns helping familiarize Americans with the benefits of comfort care and advance care planning, including a major effort from the American Cancer Society’s Cancer Action Network.
“We are working with disease-specific organizations. When a patient googles lung cancer, two things come up: the Wikipedia page and the American Cancer Society or other disease-specific organization,” Meier offered. “Through our partnership, we have developed a series of ads talking about palliative care that sees the patient beyond cancer treatments.”
Part of the cancer network’s “Quality of Life” campaign includes advertisements in magazines. One depicts a female cancer patient looking upward with the word “chemotherapy” written below. The “che” and “apy” are crossed out in purple, highlighting the word “mother.”
- 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
- May 2014
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- December 2013
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- October 2013
- September 2013
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- December 2012
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Daniel Gaitan serves as a content producer...More