LMM Founders on Barriers to End of Life Care for Chicago’s Public Radio
Posted on Friday, July 19th, 2013 at 5:58 pm by lifemediamatters
The barriers standing in the way of the best end of life care are numerous. Randi Belisomo speaks with Dr. Julie Goldstein of Illinois Masonic Medical Center, Dr. Mary Mulcahy of Life Matters Media and Ronette McCarthy of Elements Cremation for the Morning Shift.
Unreasonable optimism among physicians common during end of life care
Posted on Monday, May 6th, 2013 at 10:06 am by Life Matters Media
Unreasonable optimism among physicians negatively impacts patients’ end of life care- often influencing the terminally ill to accept more aggressive, costly treatments with little chance of effectiveness.
Haider Javed Warraich, a resident of internal medicine at the Beth Israel Deaconess Medical Center, recounts his optimism when he first met a woman suffering from heart failure and a condition preventing blood from flowing out of her heart.
“While learning her medical history, I also got to know her,” Warraich writes. His patient was a 50 year-old former artist, derailed by addiction. “At this point, she wasn’t a suitable candidate for heart surgery. But I felt there was still hope,” he recounts in The New York Times Sunday Review.
With perseverance, Warraich convinced his colleagues to order a procedure called alcohol septal ablation. Though the procedure could potentially reduce her symptoms, it came with many risks. His patient died the next day, after a complete heart block and aggressive attempts to revive her.
Warraich explains that he was victim of “irrational optimism, a condition running rampant in both doctors and patients, particularly in end of life care.” These physicians may push for costly and more aggressive treatments as a last resort, even when there is little hope of recovery.
As a study published in 2000 for the British Medical Journal shows, about two-thirds of doctors overestimate the survival of terminally ill patients. ”Doctors are inaccurate in their prognoses for terminally ill patients and the error is systematically optimistic,” concluded the researchers, headed by Nicholas A. Christakis, then of the University of Chicago.
Many times, those poor estimates are never fully communicated to the patient. A 2001 study of cancer patients published in the Annals of Internal Medicine found that physicians only told patients their estimated survival 37 percent of the time. No estimate was given 23 percent of the time. “Around 70 percent of the discrepant estimates were overly optimistic,” Warraich notes.
A 2012 study published in the Journal of Clinical Oncology found that cancer patients who talk with their physicians about how they want to die are less likely to opt for aggressive end of life treatments in the last two weeks of life, and they have much more comfortable deaths.
“Aggressive care at the end of life for individual patients isn’t necessarily bad, it’s just that most patients who recognize they’re dying don’t want to receive that kind of care,” said lead author Dr. Jennifer Mack of Harvard University Medical School.
Similarly, Warraich suggests more palliative care for patients unlikely to survive a serious illness. “Modern palliative care originated in response to the proliferation of new treatments and resuscitation technologies,” he writes. Palliative care not only provides more comfort alongside standard treatments, but it has been shown to help patients live a little longer.
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POLST form presented at Northwestern Memorial, a seminar from LMM co-founder Mary F. Mulcahy, M.D.
Posted on Thursday, May 2nd, 2013 at 3:12 pm by Life Matters Media
“The Illinois POLST form is a step in the right direction,” said Mary F. Mulcahy, a co-founder of Life Matters Media and practicing oncologist at Northwestern University, while lecturing physicians about the form Thursday at Northwestern Memorial Hospital.
In March, the Illinois POLST form was released to the public, an effort headed by the POLST Paradigm and the Chicago End-of-Life Care Coalition. This update to the Illinois DNR advance directive aims to improve the quality of life for patients at end of life.
POLSTs, Physicians Orders for Life Sustaining Treatment, are more detailed than conventional living wills and advance directives. These forms give patients the freedom to indicate preferences regarding resuscitation, intubation, intravenous antibiotics and feeding tubes. Such forms are intended for patients in their last year of life, and they can follow patients across state care settings and direct doctors to provide or withhold lifesaving treatments.
The form should be adjusted over time to fit each patient’s prognosis. “This is not a one-time thing, as patients progress the form can change,” Mulcahy said. “There should be shared decision-making between physicians and patients.” To be valid, the form must be signed by the attending physician.
In the U.S., the average patient visits the hospital more than 30 times and meets nine different physicians during the last six months of life. These patients could benefit from having their medical wishes written down and on hand; the convenience helps cut through the chaos and confusion prevalent in care settings.
POLST was developed in Oregon in the 1990s, and now 14 states have POLST programs. Twenty-eight states are considering the use of such forms.
“Hopefully this form will change the culture and get people talking and preparing for the end of life,” Mulcahy said.
Palliative care expert Andrew Thurston, M.D., agreed. “I think this is great. My hope for the POLST form is that it will clarify patients’ wishes for their end of life care, and that it helps doctors more effectively communicate with their patients,” said Thurston. “We need more open discussion, and with easier language, this form helps.”
More about POLST
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Life Matters Media participates in “Great Challenges”: End of Life Care
Posted on Monday, April 22nd, 2013 at 8:54 am by Life Matters Media
Life Matters Media is proud to participate in the TEDMED “Great Challenges” program, sponsored by the Robert Wood Johnson Foundation. End of life care has been designated as one of the twenty “Great Challenges” in health and medicine. The program’s mission is not to solve the problems surrounding end of life care, but to provide unbiased, inclusive viewpoints of the challenges from a multidisciplinary perspective.
At the conclusion of TEDMED 2013, Life Matters Media was pleased to take part in “Great Challenges Day,” held at George Washington University, in which participants explored how storytelling and narrative framework can be used to gain a deeper understanding of end of life care. Storytelling is at the core of what our organization aims to do as we prepare to launch our full digital platform in the coming weeks, and the “Great Challenges” program shares our belief that greater understanding in health care and decision making can stem from sharing true narratives- not data.
Below is the “Discovery Doodle” by graphic recorder Leah Silverman, depicting some of the challenges offered by program participants in coming to grips with end of life care.
Modern medicine has extended the life expectancy of many terminally ill Americans, but in turn, that prolongation of life can result in more intensive care and cost. In 2010, Medicare paid $55 billion for physician and hospital bills during the last two months of patient’s lives. Going forward in its work, the “Great Challenges” program believes that quality end of life care requires balancing doctor, family and patient input, and that making end of life decisions can relieve physical and emotional tolls on patients and their loved ones. Life Matters Media shares this belief.
Here are some of the contributing factors that make end of life care such a pervasive medical and social problem, as offered by “Great Challenges” team members:
-Deaths usually occur in hospitals or special care units, often with only medical personnel in attendance. Unfamiliarity with death seems to exaggerate fear of it. (Barbara Coombs Lee, Compassion and Choices)
-The Scarlett O’Hara Syndrome, or “I can’t think about this today; I will think about it tomorrow.” Many find it culturally inappropriate to go about advance planning or advanced health care directives, and others find it too emotionally difficult. (Bruce Jennings, Center for Humans and Nature)
-Linking end of life care with right to life movements are often erroneously linked. The term “death panels” often elicits an inaccurate and emotionally charged portrayal of the process involved in helping people die naturally and with comfort and dignity. (Jennie Chin Hansen, American Geriatrics Society)
-There is a lack of accountability in our health care system, with most measures task-based rather than patient-centered. There are no adequate quality measures to examine care of the dying (Joan Teno, Center for Gerontology and Health Care Research)
For more on the “Great Challenges”: www.tedmed.com/greatchallenges
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Projects get people talking about end-of-life
Posted on Sunday, February 24th, 2013 at 12:40 pm by Life Matters Media
As the nation’s baby boomer population begins caring for their aging parents and approaches retirement age, new online resources are aiming to get more people talking about death and dying.
Research shows earlier advance care planning contributes to better end of life care and more comfortable deaths. However, some 80 percent of patients do not plan, according to American Medical News. A new project, Prepare, aims to change this by offering free interactives that help seniors choose medical decision makers and form questions for doctors.
The Web site features large print and simple wording to make it navigable. Simple questions like, “Do you know how to use a computer?” and voice-over directions help those struggling with technology. There are even videos showing actors discussing end of life preferences with family.
“[The] tide in advance care planning has been moving away from forms and toward discussions,” project leader Dr. Rebecca Sudore, a geriatrician at the University of California, San Francisco, told The New York Times’ Paula Span.
Although advance directives remain important, they can be intimidating. Discussions are helpful because “most people make a lot of medical decisions about serious diseases and treatments over the course of their lives,” Sudore said. “They’re not only end of life decisions.”
The Conversation Project
The Conversation Project, launched in August by Boston journalist Ellen Goodman, aims to get families talking to each other about their end of life preferences. Supported by the Institute for Healthcare Improvement, the interactive site provides discussion questions and stories from those who have successfully made their wishes known.
“What we really need is to change the cultural norm from not talking about it to talking about it,” Goodman told USA Today. She said more than 60,000 people have visited the site and thousands have downloaded the free conversation starter kit.
These discussions will only become more common. In 2000, there were more than 35 million Americans 65 and older. By 2030, there will be 72 million.
Learn more from the Life Matters Media Newswire:
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- Zion-Benton News
- Diane Meier: Palliative Care Improves Quality Of Life, Reduces Medical Spending
- HIV-Infected Organ Ban Lifted With HOPE Act
- Short Hospice Stays May Mean Lack Of Awareness, As NHPCO Launches First National Campaign
- Northwestern Magazine Highlights Life Matters Media
- The Accidental Caregiver: An Interview With Gregor Collins
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