Newswire

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.


Death Class: New Jersey Offering Becomes A Chicago Idea?

Another Chicago Ideas Week is drawing to a close, the annual fall celebration convening the brightest thought leaders worldwide to inspire and stimulate Chicagoans to act on new initiatives and ventures. Whether residents or institutions of higher education will act on one such proposal hinges on one key attribute: comfort with the concept of “death,” or the curiosity to learn more about it.

Dr. Norma Bowe, a tenured professor at Kean University’s College of Education, challenged educators and students to explore the possibility of a class like her own in Union, New Jersey; “Death in Perspective” is an experiential learning opportunity with a three year waiting list to enroll.

Norma

Dr. Norma Bowe

“It’s a framework to experience death as a reality instead of as a concept,” Bowe told a crowded Thorne Auditorium on the downtown campus of Northwestern University. The former nurse shuns a typical curriculum of many “Death and Dying” university classes that focus on philosophical, religious and historical aspects of the dying process and its meaning. Instead, 30 students each semester take weekly field trips.

Bowe tours undergraduates through hospitals, a Ronald McDonald House for families with children receiving treatment for serious illness, nursing homes, hospices, maximum security penitentiaries, funeral homes, crematories, cemeteries and the office of a medical examiner. There, students witness the process of an autopsy. Each week, students write a reflection on the places they tour.

The first assignment, however, is to write a letter to someone they love who has died; they then read their letters aloud to classmates. “There’s something very powerful about looking into a person’s eyes and sharing their grief together,” Bowe said.

She recounted the personal impact of her class on students; one student, who was suicidal, was befriended by another young woman who overcame suicidal tendencies. She sat next to the suicidal student each week, sharing how she came out of profound depression. Another student, after witnessing a woman hold her father’s hand and say goodbye to him as he died in hospice, decided to call her own father. “She hadn’t spoken with her father in four years,” Bowe said. “The light is always juxtaposed to the darkness.”

“It’s a framework to experience death as a reality instead of as a concept”

Class feedback keeps other students eager to enroll, Bowe said, sharing their comments: “Death doesn’t need to be scary, it’s a natural part of life,” “Bucket lists are important, do one,” and “Say things now rather than later to those you love.”

“Death in Perspective” has been featured in the Los Angeles Times and inspired the reporter, Erika Hayasaki to write a book: The Death Class, A True Story About Life.  

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Bowe said her aim is broader than to foster an understanding of death, but to encourage authenticity, openness, sharing, honesty, fearlessness and acceptance.

“Life is a precious gift,” she said. “Treat it as such.”

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Physician Assisted Suicide Conference Draws Supporters And Opponents To Chicago

We think there are a lot of well-intentioned people here. Most of them have the best of intentions, but they refuse to stop and think about the implications of the policies they are pursuing.

Hundreds of patients, ethicists and medical providers attended the World Federation Conference in downtown Chicago to voice support for physician-assisted suicide, also known as “death with dignity.” The conference, made up of 49 right-to-die organizations from around the world, also drew numerous protestors from religious and disability rights groups.

Hosted by the non-profit Final Exit Network, the event aimed to encourage grassroots organization to support “death with dignity” laws and change attitudes.

“We believe that legislation does not go far enough. We believe that it is the right of every competent adult, suffering from severe, intractable illnesses which have deprived them of quality of life, to choose to hasten their death,” said Janis Landis, vice president of Final Exit Network, in a statement to Life Matters Media.

They would dictate to me how much pain and suffering I have to endure at the end of my life. They want to limit my right to choose.

Protestors with Not Dead Yet

Protestors with Not Dead Yet

Proponents of “death with dignity” legislation say such laws increase patient freedom at the end of life, because the seriously ill can avoid suffering and die on their own terms. In Oregon, the first state to legalize physician-assisted suicide, terminally ill adults may self-administer a prescribed lethal dose of barbiturates.

But some disability advocates, medical providers and religious organizations argue physician- assisted suicide is unnecessary and endangers the most vulnerable patients. The American Medical Association, the nation’s largest organization of doctors and medical students, does not support it.

Adam Vallard, a member of Not Dead Yet – a national disability rights group opposing all forms of aid in dying legislation – said he worries doctors could pressure disabled patients to end their lives early.

“There is this movement of right-to-die advocates who are not making distinctions between allowing someone to die with dignity and steering someone to assisted suicide. We see this as a larger trend in our society to devalue lives that are costly,” Vallard said. “We think there are a lot of well-intentioned people here. Most of them have the best of intentions, but they refuse to stop and think about the implications of the policies they are pursuing.”

Other protestors held signs, wore skeleton masks and chanted. Some conference attendees said they were told to avoid them. Many reported being instructed to avoid conversation out of fear of inciting violence.

Ken Leonard, a board member of the Hemlock Society of Illinois, called the protestors “religious extremists” and misinformed.

“Most of them are there because they believe it is God telling them to do so,” Leonard said. “They would dictate to me how much pain and suffering I have to endure at the end of my life. They want to limit my right to choose.”

Tucker

Kathryn Tucker, executive director of Disability Rights Legal Center

Kathryn Tucker, executive director of the Disability Rights Legal Center and former legal counsel to Compassion & Choices, one of the nation’s leading advocacy groups for the legalization of physician-assisted suicide, said she works to ensure disabled Americans receive the care they want at the end of life.

“Dying these days has become a long, arduous journey,” Tucker said in her presentation. “Choices will expand, aid in dying will become increasingly available, we will see more clinical practice guidelines and more evidence that the process is becoming normalized.”

Physician-assisted suicide is legal in five states: Oregon, Washington, Vermont, Montana and Hawaii.

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Support For Medicare Coverage Of End Of Life Discussions Among Providers

Courtesy WikiMedia Commons.

Courtesy WikiMedia Commons.

Many medical providers, end of life care activists and hospice nurses support Medicare reimbursement for end of life conversations between physicians and patients.

Medicare could soon begin reimbursing doctors if proposed billing codes from the American Medical Association are approved. Almost five years ago, similar proposals were dropped from the Affordable Care Act amid allegations that coverage for end of life conversations would lead to “death panels.”

“Each year, the AMA provides CMS with revisions to the CPT (Current Procedural Terminology) coding system that is used to price thousands of physician services. In a typical year, there are hundreds of codes that are either new, revised or deleted,” according to a CMS statement sent to Life Matters Media.

The Centers for Medicare and Medicaid Services may choose to establish payment and cover the sessions as described by the code; not pay for the specific code, but cover the sessions as part of another code; or deny payment altogether. A decision is expected this fall.

Sessions for some 50 million Americans could be covered by Medicare, and some private insurers have already started reimbursing doctors for time spent helping patients complete advance health care directives. Interest in doctor-patient communication has increased as baby boomers age.

“We think it’s really important to incentivize this kind of care,” Dr. Barbara Levy, chair of the AMA committee that sends codes to CMS, told The New York Times. “The idea is to make sure patients and their families understand the consequences, the pros and cons and options so they can make the best decision for them.”

The hope is that doctors will encourage more seriously ill patients to complete advance health care directives and identify “goals of care.” An advance 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 carried through in case of illness or incapacity.

“Just as important as the completion of these documents are the discussions that patients have with their physicians and other health care providers, as well as their family members,” said Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization, in a statement to Life Matters Media. “Discussing advance care planning before a person finds him or herself in a medical crisis will help ensure the patient is more likely to get the care that he or she wants.”

Research shows patients that discuss their care options when facing a serious or life-limiting illness report a higher quality of life. “Family caregivers also benefit from discussions held between physicians and patients,” Schumacher added.

When health care reform was signed into law in 2010, many Democrats wary of being identified with “death panels” dropped all proposals associated with end of life planning, despite support from many in medicine.

According to Politifact, a Pulitzer Prize-winning fact checker, comparing end of life counseling to “death panels” was 2009′s “Lie of the Year.” Former vice presidential candidate and Alaska governor Sarah Palin was the first to coin the term “death panels” on her Facebook page after the release of an early draft of the bill. Some conservatives charged that vital care would be cut off to the aged and ill if doctors recommended they receive less aggressive treatments.

Karen N. Long, president of the Chicago End-of-Life Care Coalition, said she believes many oppose coverage for end of life discussions out of ignorance.

“Everyone in this field has been working on this for a long time. It’s very much needed, because it helps patients think about what’s important to them, what they consider a ‘good’ quality-of-life,” Long told LMM. “I think most of the controversy goes back to the conflated issue of ‘death panels,’ where some individuals misquoted and misunderstood what was in the proposed law.”

Dr. June M. McKoy, director of geriatric oncology at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University in Chicago, described coverage for end of life counseling as a “double edged sword,” because physicians must be careful not force their medical advice or religious and political beliefs upon patients.

“Doctors do not live in a vacuum,” she told LMM. “Can doctors learn not to be paternalistic? To also be quiet and listen? To be a facilitator?”

McKoy recommends doctors develop a trusting relationship with their patients and bring up end of life-related discussions more than once, because a patient’s wishes can change.

She called the “death panels” controversy “farfetched and ludicrous,” because most medical centers have “layers” to protect patients, and that most doctors work to honor their patients’ wishes.

“Coverage can be a great thing, because it gets the conversation going. Many people don’t get the chance to make their own end of life decisions — somebody else makes it for them. It helps to have decisions in writing,” she added. “It helps families, too. I have seen families torn terribly apart after a parent dies, when siblings stop talking to each other, because they disagree about the parent’s medical care.”

Loretta Downs, a hospice volunteer and end of life care activist, supports coverage for end of life counseling because she fears receiving unwanted treatments in case of incapacity.

“I just turned 65, and Medicare is spending a great deal of money on various medical tests that are triggered by turning 65,” she told LMM. “It would be helpful and practical to include payment for a conversation with my primary care physician about protecting me from unwanted medical treatment if I unexpectedly became hospitalized in critical condition and unable to voice my choices for treatment.”

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Reimbursing Doctors For End Of Life Discussions

Medicare could soon begin reimbursing physicians for end of life conversations with patients, almost five years after similar proposals were taken out of the Affordable Care Act.

Bypassing the political process, some private insurers have already started reimbursing doctors for time spent helping patients complete advance health care directives, The New York Times reports. Interest in doctor-patient communication has risen as the millions of baby boomers age.

Sessions for some 50 million other Americans could be covered by Medicare if recent requests from the American Medical Association, the nation’s largest association of physicians and medical students, are approved. The AMA recently created codes for end of life conversations and submitted them to the Centers for Medicare and Medicaid Services (CMS).

“Each year, the AMA provides CMS with revisions to the CPT (Current Procedural Terminology) coding system that is used to price thousands of physician services. In a typical year, there are hundreds of codes that are either new, revised or deleted,” according to a CMS statement sent to Life Matters Media. “Advanced care planning was among the codes sent to us by the AMA.”

CMS may choose to establish payment and cover the sessions as described by the code; not pay for the specific code, but cover the sessions as part of another code; or deny payment. A decision is expected this fall.

“We think it’s really important to incentivize this kind of care,” Dr. Barbara Levy, chair of the AMA committee that sends codes to CMS, told the Times. “The idea is to make sure patients and their families understand the consequences, the pros and cons and options so they can make the best decision for them.”

The signature of President Obama on the Affordable Care Act. Courtesy WikiMedia Commons and whitehouse.gov

The signature of President Obama on the Affordable Care Act. Courtesy WikiMedia Commons and whitehouse.gov

When health care reform was signed into law in 2010, many Democrats wary of being identified with “death panels” dropped all proposals associated with end of life planning, despite support from many medical professionals, caregivers and ethicists.

According to Politifact, a Pulitzer Prize-winning fact checker, comparing end of life counseling to “death panels” was 2009’s “Lie of the Year.” Former vice presidential candidate and Alaska governor Sarah Palin was the first to coin the term “death panels” on her Facebook page after the release of an early draft of the bill. Some conservatives charged that vital care would be cut off to the aged and ill if doctors recommended they receive less aggressive treatments.

Karen N. Long, president of the Chicago End-of-Life Care Coalition, said she believes patients will benefit from one-on-one conversations with doctors about their “goals of care.”

“Everyone in this field has been working on this for a long time. It’s very much needed, because it helps patients think about what’s important to them, what they consider a ‘good’ quality-of-life,” Long told LMM. “I think most of the controversy goes back to the conflated issue of ‘death panels,’ where some individuals misquoted and misunderstood what was in the proposed law.”

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 that one’s end of life wishes are carried through in case of illness or incapacity.

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Katy Butler: Patients Can Experience A “Good” Death

Award-winning journalist and bestselling memoirist Katy Butler wants more Americans to plan for and experience a “good” death.

Katy Butler fields questions from audience members

Katy Butler fields questions from audience members

Butler, author of Knocking on Heaven’s Door, spoke about the importance of open and honest communication between patients, families and doctors Thursday at Loyola University-Chicago.

“We live in a culture that doesn’t want to talk about death at all,” Butler told the crowd of patients, medical students and activists. “We need to start getting braver and more honest about it.”

After witnessing her father’s aggressive, and often unnecessary, end of life treatments, Butler vowed to help ensure that her mother would experience a more peaceful death. At 79, her father, Jeffrey, suffered a severe stroke. As his condition worsened, doctors outfitted him with a pacemaker, a procedure Butler said artificially prolonged his slide into dementia.

KnockingOnHeaven'sDoorShe devotes a portion of her memoir to her mother’s struggle.

“On the phone with my brothers and me that winter, she cried. She loved my father. She’d vowed to be with him in sickness and in health, she told us— and who was she to think they’d escape the sickness part? He’d taken care of her for 50 years, and now it was her turn. But in ways we were only beginning to fathom, my father was no longer her husband, and she was no longer his wife,” she writes. “At 77, she had become one of 29 million unpaid, politically powerless and culturally invisible family caregivers— 9 percent of the United States population— who help take care of someone over 74.”

Her mother, Valerie, would later die in a quiet hospital room in Connecticut. She was fully conscious until the end, and she was not “plugged into machines” in the intensive care unit.

“Both my parents lived really good lives, and they hoped to die really good deaths. One of them succeeded, one of them failed,” she said. “Think about what is a good death for you. How would you like to die? Whatever the good death means to you, we all share something in common: we live in a country that doesn’t want to talk about death.”

According to Butler, advances in modern medical technologies coupled with a medical system that rewards doctors for providing more treatments have helped make death and dying taboo.

“Can you imagine the title of the bestselling book from 1451? Translated into all the European languages, the Ars Moriendi, or The Art of Dying, was a script for the death bed,” she said. “It’s full of very understandable, human illustrations … the most important person in these illustrations is the person dying, and their state of mind. Death is depicted as a very spiritual and important event.”

Today, about 20 percent of seriously ill Americans die in the intensive care unit, and 30 percent cycle through it in the last month of life.

“The problem did not start three days before the family showed up in the intensive care unit. The problem started five to 10 years before,” she added. “We’ve got to start talking about this in a much more subtle, nuanced way much earlier.”

Sheryl Brown, a clinical coordinator for the intensive care unit with Northshore University HealthSystem in Evanston, Ill., said she was inspired by Butler’s presentation.

“I think that she brings that personal experience that has so much weight. When people talk academically about matters of death and dying, it doesn’t touch the human soul,” she said. “A sense of passion about this will move us forward.”

Alyssa Foll, a chaplain with Adventist Midwest Health, said she believes conversations about end of life-related issues are taboo. “Like the Victorians in England avoided sex, we avoid end of life conversations,” she said. “I think we live in a youth-obsessed culture, but we also rely on technology. People think technology will save them and prolong their lives, but it won’t.”

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