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.
Music helps calm and comfort seriously ill patients and grieving families facing the end of life, said thanatologist Tony Pederson at the Music-Thanatology Association’s International Conference.
Pederson, a trained harpist and vocalist with nearly two decades of music-thanatology experience, performed for nurses, physicians and end of life care advocates Friday at Midwest CareCenter in Glenview, Ill.
“Music thanatologists address pain and symptom management issues as people approach the end of life. We use music as a clinical tool to connect to things like breath, pulse, pain and tension,” Pederson told Life Matters Media. “It’s not about playing pretty music, it’s about connecting to the body.”
Music thanatologists are usually invited to perform for patients receiving hospice care or palliative medicine- care designed to comfort, not cure disease. The harp is typically the primary instrument played.
“It’s me, the music, the harp and the patient,” Pederson added. “I’ve also seen how beneficial this is to the family. People tend to be disconnected from the dying process, and because music provides the patient relief, it also helps the family calm down. Some are able to finally rest.”
Traditional thanatologists often avoid religious motifs or hymns in favor of moment-to-moment, almost improvised, melodies that mirror a patient’s emotions or environment.
“We’re not playing particular songs, it’s really changing moment-by-moment. But we are acutely conscious that we are caring for the whole person, spirituality included,” he offered.
Kieran Schnabel, a music thanatologist and palliative care specialist from Portland, Ore., often performs pop music for seriously ill children.
“There are so many benefits for patients: emotional, physical, spiritual, benefits to the family,” Schnabel told LMM. “Children near the end of life are different from adults. Many are still up and running around, so I end up playing interactive music for them.”
Popular songs include “Let It Go,” the Oscar-winning anthem from Disney’s animated musical Frozen, and “Shake It Off” by pop singer Taylor Swift.
“Pop and harp music does the same thing: changes the environment and helps people cope with what’s happening,” he added. “More people are recognizing the power of music and it’s ability to provide care.”
End of life expert Dr. Martha Twaddle, senior vice president for Medical Excellence and Innovation at Illinois-based Journeycare, said she believes music thanatology will become more common as the baby boomer population ages and more terminally ill patients opt for comfort care.
“Music helps patients, but it also affects hospital staff in a positive way,” Twaddle said. “It changes our agitation as we walk from agitated bedsides to the next room.”
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.”
Baby boomers and seniors planning for a natural, environmentally neutral burial have a multitude of options from which to choose.
There are nearly 50 certified green cemeteries in North America, according to the Green Burial Council, a nonprofit advocacy group. Many patients and families seek burials with minimal ecological impact to help curb the spread of ground pollutants and encourage organic decomposition. Others favor natural, or green, burials for religious or cultural reasons.
“It just seems to be the right thing to do for some people,” said Kevin Corrado, coordinator of Nature Path Sanctuary in Verona, Wis. “Natural burials are consistent with Jewish, Christian and Islamic traditions. The concept of ‘from dust to dust.’”
In 2011, Corrado, a retired clinical social worker, helped launch the 25-acre sanctuary, one of the first green cemeteries in Wisconsin. Embalmed bodies and non-biodegradable vaults or containers are prohibited.
“Putting concrete vaults into the ground or formaldehyde, a carcinogen, in embalming fluid doesn’t make sense,” he added. “People are questioning the practices of what has become conventional in the U.S. Embalming isn’t common elsewhere. We really are a traditional cemetery.”
Corrado said 26 bodies and seven cremains have been placed during the last three years. Some families opt to help bury or prepare their loved ones.
“They wrap the body in a shroud or transport it to the cemetery themselves,” he offered. “It can be very meaningful for some, and many have pre-planned for this type of burial while receiving hospice care.”
Most graves in green cemeteries are marked with a simple wooden monument or flat stone to help preserve the landscape. Others prohibit flowers not indigenous to the area.
Stephen Dawson, third generation owner of Sax-Tiedemann Funeral Home & Crematorium in Franklin Park, Ill., said he believes embalming fluid is unnecessary for most bodies set to be buried within three or four days of death.
“We have refrigeration, so if a person passes away and is buried during the weekend, it’s no problem,” Dawson said. Embalming fluid contains water and lanolin to keep tissues soft and slow down decomposition for bodies being transported across state lines or buried weeks after death.
“I think green burials are a great thing, because it brings us back to nature and families being able to say goodbye,” he added. “Most green cemeteries look like forest preserves, so families visit them and experience it.”
He recommends that patients and families plan for a green burial before death because of the multitude of choices; a body can be set in a wicker or wooden casket or placed in the ground naked. Cremation is environmentally-friendly if heated with natural gas and the ashes placed in a biodegradable urn.
Another option is alkaline hydrolysis: a body placed in pressurized boiling alkali water for four to 12 hours. “The alkali gets rid of all the soft tissue and just leaves the brittle bone behind,” Dawson said. “The bone is then put into a processor and broken down like cremains. The waste water can be used to fertilize fields.”
- 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
- 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