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.
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.
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.
“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.”
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.”
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.
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.”
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.
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.”
- Advance Care Planning
- Hospice and Palliative Care
- Life Choices
- Politics and Law
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- Reuters Health: LMM Reports
- Voices in Bioethics: LMM Commentary
- Advance Care Planning Among Seniors Of A Diverse City
- Music For The Dying: Helping Patients And Families
- Dr. Atul Gawande Chicago: A Plea For Better End Of Life Care In Chicago
- Advance Directives In Church: Honoring Choices Wisconsin Encourages Christians To Plan
- Death Class: New Jersey Offering Becomes A Chicago Idea?
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Daniel Gaitan serves as a content producer...More