Chicago End-Of-Life Care Coalition Hosts Fall Benefit

Chicago End-Of-Life Care Coalition Hosts Fall Benefit

Posted on Tuesday, November 11th, 2014 at 8:42 am by lifemediamatters

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.

Brendan Kelly performing "Lilacs"

Brendan Kelly performing “Lilacs”

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.


Meeting Encourages More Comprehensive End Of Life Care

Posted on Monday, November 10th, 2014 at 1:51 pm by lifemediamatters

This piece was first published in Reuters Health. President Randi Belisomo is a contributor.

Randi BelisomoPhysicians turned to contemplative techniques last week in New York to learn how to improve end of life care and handle the stress, burnout and communication challenges faced in caring for seriously ill patients.

“There are skills that are not often talked about in medical schools that can be taught and learned, and it begins with self-care and developing empathy for one’s self,” said Robyn Brentano, executive director of the Garrison Institute in Garrison, New York.

The Institute, overlooking the Hudson River, is housed in a former Capuchin monastery and hosted close to 200 attendees at its symposium on communication and the interpersonal relationship within palliative and end-of-life care.

The conference centered on developing compassion and mindfulness among practitioners, so they may be more “fully present” with patients coping with physical, emotional and existential struggles often accompanying one’s final days, Brentano said.

Dr. Ira Byock, chief medical officer of the Providence Institute for Human Caring, considered the gathering a “master class” to discuss deeper levels of caregiving strategies.

“The entire culture of health systems approaches illness and dying through the lens of a medical problem,” Byock said. “But illness and dying are deeply personal experiences for the individual who is ill and the people that love that person.”

An Institute of Medicine (IOM) report released this fall – titled Dying in America – cited deficiencies in education and development among end of life care providers nationwide. The knowledge base of all clinicians needs improvement, according to the IOM, and is in urgent need of translation to bedside care.

Byock instructed attendees in the therapeutic use of imagination. The techniques are aimed at helping the providers perceive opportunities for growth during the end of life.

“We can look at the future as if we were shoulder to shoulder with a patient on a journey neither of us could choose,” Byock said. “Perceiving what is possible to have value or meaning to the person without it in any way discounting or diminishing the unwanted fact they can’t reverse the illness.”

That imagination often relies on narrative techniques in medicine, such as soliciting a patient’s life story to discern what inspires his or her individual life with value and meaning.

GARRISONNarrative medicine is a field pioneered by Columbia University professor and physician Rita Charon, who is asking attendees to better recognize what their patients may hold central.

“To the extent we can recognize something about patients, we get recognized back,” Charon said. “That’s where the joy comes from for us. It’s not just counting lung nodules on the x-ray. It’s being present in the room with the patient and making things better. It’s not always what we can fix with a pill or another radiation treatment.”

Sometimes, the death experience can be improved with attention to the aesthetics surrounding the patient, says BJ Miller, a hospice and palliative physician and executive director of the San Francisco-based Zen Hospice Project. The attention to design in a patient’s environment is something he is asking providers to notice and improve.

“So much is stripped away, but what you are really left at the moment you die is some sensory input,” Miller said.

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Palliative Medical Teams Encouraged By Institute Of Medicine’s “Dying In America” Report

Posted on Friday, October 31st, 2014 at 7:07 am by lifemediamatters

Courtesy the John D. & Catherine T. MacArthur Foundation.

Courtesy the John D. & Catherine T. MacArthur Foundation.

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.

American Cancer Society Adverrtismemnt

American Cancer Society Advertisement

“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.”


Palliative Medicine: Essential To Quality Cancer Care

Posted on Friday, October 10th, 2014 at 11:07 am by lifemediamatters

IMG_0192.JPGBetty Ferrell

Modern cancer care is often not patient-centered, coordinated or evidence-based, said Betty Ferrell, associate director of nursing research with City of Hope National Medical Center in Duarte, Calif. As the baby boomer population ages and costs of unnecessary cancer care rise, Ferrell expects palliative medicine to become more common and accepted by physicians.

Ferrell, an oncology nurse with nearly 35 years experience, presented “Improving Quality Cancer Care: Palliative Care as an Essential Ingredient,” at the second annual Hospice and Palliative Care Symposium, held at the Chicago Botanic Garden. “It is an outrage that many patients are only referred to palliative care in their last days,” she said.

There is estimated to be a 30 percent increase in the number of individuals facing cancer by 2022, with a national cost totaling $175 billion. “The older population is getting older, and older people are living with cancer,” Ferrell said. “People are diagnosed with disease, and we often focus only on the life-prolonging treatments, we don’t focus on palliative care until the end. The best cancer care incorporates palliative care at the beginning.”

Fifty-three percent of cancer diagnoses in 2012 were from individuals 65 and older, according to a new report published by the Institute of Medicine.

Palliative medicine is usually provided to the seriously ill to help treat symptoms and side-effects of disease and aggressive treatments. The goal of palliative care is not cure, but symptom management. “There is growing evidence that people actually live longer with access to palliative medicine,” Ferrell offered.

“Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment,” according to recommendations from the Center to Advance Palliative Care and the American Cancer Society. Because palliative medicine is specialty care most often provided by expert clinicians only when life-prolonging medicines fail, many oncologists overlook it.

To help avoid unnecessary, often aggressive treatments and encourage earlier palliative care referrals, Ferrell recommends open and honest communication between doctors, specialists and patients. “Systems of care have to change,” Ferrell added. ” As the population changes and costs rise, there will not be an option to not have fully integrated palliative care at medical centers.”


A Simple Change? The IOM Report On “Dying In America”

Posted on Thursday, September 18th, 2014 at 8:24 am by lifemediamatters

Courtesy Creative Commons via Flickr

Courtesy Creative Commons via Flickr

Say there was a simple change to the health care system that would reduce cost, reduce demand, increase quality of life and satisfaction, address the patient and not just the disease, improve care coordination and increase patient autonomy. This change is possible, but it requires addressing the problem that in America, we do not die in the manner we wish.

The Institute of Medicine released its report this week, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Despite decades of efforts, the report shows that there has not been much change in how we die. We mostly want to die at home, and yet we die in hospitals. We mostly want comfort care, and yet we mostly receive aggressive care. We want our emotional and spiritual needs met, yet physicians are not trained in dealing with them.

The trends in end of life care have changed recently, though not for the better. We tend to move around a lot at the end- between home, long term care facility and hospital. More technical caregiving is done by family members. Although palliative care leads to a higher quality of life, including better understanding and communication, access to home care, emotion and spiritual support and symptom management, physicians rarely refer to such services.

The goal of the report is to create a roadmap examining what steps should be taken in order to make the end of life a better experience. Among its suggestions:

  • The system of care needs adjustment to provide for “higher quality, integrated, patient-centered, family-oriented, and consistently accessible around the clock” care. Palliative care can provide this, so more palliative care professionals are needed, along with more (and earlier) referrals. All medical students should receive training in palliative care.
  • Increased communication between physicians and patients. At the end of life, most need assistance in making care decisions at a time they are likely surrounded by people they do not know. Thus, the report suggests that advance care planning conversations begin in the teenage years and continue throughout life. These chats should address not only desired care and values, but also spiritual and emotional needs. People should receive assistance in completing advance directives. Health care providers should document these conversations not only in the physician’s office but also in medical records easily accessed from most care locations.
  • A change in funding priorities. Whereas most funding to aggressive, last-ditch efforts to keep bodies functioning, health care dollars should fund coordination of care, palliative care-like programs and physician time for conversing on end of life issues. There should be additional fund for POLST programs in all states, creating truly integrated, inter-operational records accessible in all settings.
  • Lastly, the report recommends improved and increased public education and engagement to “raise awareness and elevate expectations about care options, the needs of caregivers and the hallmarks of high-quality care” as well as to complete advance care planning conversations and documents.

Ever since Elisabeth Kübler-Ross inconveniently pointed out that Americans have an “avoidance problem” with death, efforts have been taken to improve care for the dying. As this report shows, those efforts are noble and innovative- but not nearly as endemic as they should be for real change allowing more to experience a good death.