Advance Care Planning Among Seniors Of A Diverse City

Advance Care Planning Among Seniors Of A Diverse City

Posted on Friday, October 24th, 2014 at 8:02 pm by lifemediamatters

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Life Matters Media Co-Founders Randi Belisomo and Dr. Mary F. Mulcahy presented “Advance Care Planning Among Seniors of a Diverse City” at the Palliative Care in Oncology Symposium in Boston, Mass.

Abstract: Advance care planning (ACP) is a system of education, reflection and documentation of health care wishes. Respecting Choices has been successful in implementing ACP throughout Lacrosse County, Wis. (J Am Geriatr Soc 2010; 58: 1249–1255). A single center study in Melbourne, AU, showed that ACP improves end of life (EOL) care, patient and family satisfaction, and reduces stress, anxiety, and depression in surviving relatives (BMJ 2010; 340: c1345).

We aim to quantify knowledge about ACP, interest in engaging in ACP, and barriers to effective ACP among the older adults of Chicago. The results will provide actionable items to implement an ACP program in a diverse city.

Methods: 17 of the 22 City of Chicago senior centers participated in a survey and education forum “Starting the Conversation”. Participants provided demographic information, awareness and knowledge of EOL wishes and advance directives (AD). Data was tabulated and analyzed using descriptive statistics in IBM SPSS Statistics 22 Software.

Results: 375 people completed the survey, the average age was 70+8, (range 41 to 93), 93.3% in English, and 6.7% in Spanish. Respondents live alone (44.5%), with a spouse (29.9%) or child (14.4%). 71% have thought about the medical care they would want at the EOL, 60% have discussed their EOL wishes with their loved ones, and 4% with their doctor. 60.5% do not know what an AD is, 25% have an AD, 76% know who would speak for them if they were unable, 58% have discussed their wishes with that person. Using neighborhood demographics, there was no difference in having an AD for predominately African-American neighborhoods compared to others (33% and 27%). Respondents from lower income neighborhoods were less likely to think about medical care at the EOL (65% and 77%), less likely to have discussed EOL care (41% and 30% have not discussed EOL care) and less likely to have an AD (19% and 31%).

Conclusions: ACP is underutilized in Chicago. The frequency of AD completion among Chicago seniors mirrors that of the U.S. (Am J Public Health. 2013;103(6):e8-e10). Unlike other population studies, no difference was found among racial groups. Participants are aware of EOL wishes, are interested in engaging in these conversations, but lack the knowledge and collaboration of their health care team.

Read more at the American Society of Clinical Oncology University Library


Music For The Dying: Helping Patients And Families

Posted on Friday, October 24th, 2014 at 12:03 pm by lifemediamatters

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Tony Pederson, music thanatologist

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.”


Dr. Atul Gawande Chicago: A Plea For Better End Of Life Care In Chicago

Posted on Thursday, October 23rd, 2014 at 1:45 pm by lifemediamatters

Dr. Atul Gawande. Courtesy WikiMedia Commons

Dr. Atul Gawande. Courtesy WikiMedia Commons

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.

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“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.”


Advance Directives In Church: Honoring Choices Wisconsin Encourages Christians To Plan

Posted on Wednesday, October 22nd, 2014 at 5:45 pm by lifemediamatters

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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.

Rev. Charles A. Orme-Rogers, Association for Clinical Pastoral Education

Rev. Charles A. Orme-Rogers, Association for Clinical Pastoral Education

“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.


Brittany Maynard’s Date With Death

Posted on Sunday, October 19th, 2014 at 7:40 pm by lifemediamatters

On Nov. 1, a 29-year-old woman named Brittany Maynard plans to end her own life. Diagnosed this year with stage four brain cancer, doctors told her that she would die — quite possibly with a great deal of pain and loss of body and cognitive function — within six months (The Los Angeles Times).