Tagged: End-of-life care

May 6, 2013

Unreasonable optimism among physicians common during end of life care

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.

POLST form presented at Northwestern Memorial, a seminar from LMM co-founder Mary F. Mulcahy, M.D.

Image: Mulcahy speaking to a group of physicians at Northwestern Memorial Hospital

“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

Washington POLST form: A new bill aims to close loophole

Illinois POLST form released to public

How POLST forms clarify wishes: Three scenarios

Life Matters Media participates in “Great Challenges”: End of Life Care

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

-Randi Belisomo

More from the Life Matters Media Newswire:

Death over dinner? There’s an appetite for it

Preparing for the dementia tsunami, a TEDMED discussion

POLST Illinois moves forward

February 24, 2013

Projects get people talking about end-of-life

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:

Some doctors still believe in psychedelic drugs

Intimacy and end of life: “The Sessions”

Medical Marijuana: DEA continues to classify cannabis alongside heroin and LSD

February 21, 2013

An OP-ED for PBS: Inequalities in the health care system

Life Matters Media co-founder Mary F. Mulcahy, M.D., published her research about the racial and economic inequalities in the U.S. health care system for PBS. She continues to spread the message of advance care planning.

She writes:

“Racial disparities and inequities in American healthcare are evident in daily life, but regrettably they are also prominent in death. In these final days of Black History Month, it is imperative to reflect on the final days of all African-Americans and the choices they have within our health care system. These are the choices they aren’t taking, and the phenomenon serves as a means of further disenfranchisement from the medical community at large.

“The National Center for Health Statistics reports that African-Americans in home health care and nursing homes are half as likely as whites to have an advance directive, such as a living will or a do-not-resuscitate (DNR) order. This disparity leaves African-Americans at risk for unwanted medical procedures, unnecessary pain and family strife.”

Read the rest at PBS

Learn more from the Life Matters Media Newswire:

Death Cafe: A movement discusses end-of-life

Some doctors still believe in psychedelic drugs

February 9, 2013

Costs and benefits of end of life treatment: A TEDMED discussion

Modern medicine allows the terminally ill to survive longer than ever, but debate continues about how much should be spent on aggressive end of life care and if such care is actually best for patients. TEDMED facilitated a live discussion about some possible solutions to these challenges with industry experts this week, as part of its Great Challenges series.

In 2010, Medicare paid $55 billion on doctor and hospital bills during the last two months of patients’ lives- more than the budget for the Department of Homeland Security, according to CBS News. Some 20 to 30 percent of those medical expenses may have had no meaningful impact on the patients’ health, according to the analysis.

The discussion tied those problems to the need for better advance care planning and communication between doctor and patient. End of life concerns take an emotional toll on a patient’s family and friends, especially in the absence of advance care plans, such as a living will or POLST form.

Some families may insist on more aggressive care for the patient because of religious or societal expectations. Some doctors do not adequately communicate a patient’s condition to family, providing loved ones with the false sense that more treatment will work. This failed communication often results in increased spending.

Medical schools continue to improve training in how to listen to patients and mind the severity of illnesses, said Richard Payne, M.D., professor of medicine and divinity at Duke University. “Generally, there is much more emphasis now on teaching doctors to listen empathically to patients and their wishes,” he said.

Although it may be difficult and uncomfortable, it is important to speak with loved ones about death and dying ahead of time, said Bruce Jennings, director of bioethics at the Center for Humans and Nature. “Advance planning and treatment planning are very important aspects of ensuring that the kind of care you receive at the end of life will be beneficial for you, and will respect your wishes and dignity,” Jennings said.

Debate about end of life care will become increasingly 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:

The lack of advance care planning persists

Vermont Statehouse votes “Death with Dignity”

Medical Marijuana: DEA continues to classify cannabis alongside heroin and LSD

February 8, 2013

TEDMED addresses health care costs

As the U.S. continues to debate solutions to the problem of rising health care costs, TEDMED facilitated a live discussion about some possible answers with industry experts Thursday.

Kavita Patel, M.D., former director of policy for the Office of Intergovernmental Affairs and Public Engagement for the White House, moderated the hour-long installment of TED’s Great Challenges program. The event streamed via YouTube.

Patel began by offering these statistics: ”In 1980, we had health care expenditures of $256 billion. In 2010, thirty years later, our health care expenditures were $2.6 trillion.” She then asked if the national health care system would benefit from physicians receiving standard reimbursements instead of fee-for-service payment.

Chapin White, a researcher for the Center for Studying Health System Change, provided an answer most doctors won’t like. “I think bringing physicians’ salaries down would certainly reduce health care spending,” White said, though noting that salaries are a small slice of overall costs.

Jeanne Stamper, a program director for Xerox Services, said we should be thinking more broadly.

“We see the trend now where a lot of physicians are giving up their private practices and going to work for these larger organizations,” Stamper explained. “So there’s a lot of change in the landscape of who’s getting paid.”

Anne Gauthier, senior program director at the National Academy for State Health Policy, said some physicians may rationalize more care to patients- regardless of that care’s usefulness.

“Physicians may have an incentive to repeat tests or to get their own information because it is not in one central place,” Gauthier explained.

“I think that we are deeply acculturated to ‘more is better.’ More medical care is necessarily better, and those who have studied this know this is not true.”

To view more in-depth analysis of this issue, some participants contributed written responses to questions from those who watched online.

For example, one TED community member asked how both doctors and patients could come to understand that doing less is often the best medicine.

Ron Pollack, J.D., executive director for Families U.S.A., answered by highlighting estimates that one-third of care delivered in the U.S. does nothing to improve outcomes and may actually be harmful.

“Without a doubt, there is a great deal of overuse and misuse within our system,” Pollack wrote. He also emphasized the need to learn more about what the right care really is.

Stamper responded similarly, pointing to care at the end of life. “Often medical decisions conflict with the patient and family’s values – I want to die at home, I want to spend as much time with family as possible, I want to keep my loved one alive as long as possible.”

Overall, the experts agreed that an American cultural shift must begin towards discussing health care costs and the end of life sooner.

“I think that we are deeply acculturated to ‘more is better’,” Gauthier offered. “More medical care is necessarily better, and those who have studied this know this is not true.”

Learn more from the Life Matters Media Newswire:

The lack of advance care planning persists

“Consider the Conversation”: A discussion at Fourth Presbyterian Church

January 24, 2013

“Consider the Conversation”: A discussion at Fourth Presbyterian Church

The acclaimed “Consider the Conversation: A Documentary on a Taboo Subject” was screened at Fourth Presbyterian Church in Chicago on Wednesday, in collaboration with the Chicago End-of-Life Care Coalition.

Directed by longtime friends Terry Kaldhusdal, a fourth grade teacher and filmmaker, and Michael Bernhagen, a hospice advocate, the film showcases interviews with health care professionals, religious leaders and the terminally ill in order to explain the importance of having the freedom to choose one’s end of life preferences. It also highlights the moral dilemmas surrounding the hastening of death, such as stopping eating and drinking, for those suffering and the artificial prolonging of life.

Loretta Downs, the CECC president, thanked the audience for being brave enough to watch such an emotionally evocative film. “Now we are living for years with chronic illnesses that before would have killed us. We think that we will never die, but we are required to talk about end of life,” said Downs, who is also featured in the documentary. “The film has inspired many people to have these conversations.”

The audience seemed to enjoy the film and engaged in a lively conversation afterwards. “I thought it was excellent, said Susan Thompson, 75. “It emphasized being natural in the most difficult moments of death and life.”

Downs acts out planning an advance care directive after film — Downs acts out planning an advance care directive with her colleague Daryl Isenberg, Ph.D., after the film for audience

Laura Pond, 54, said she did not like the film’s stance on hastened death. “I found it difficult to watch because I have a chronic illness and I thought people in the film were giving up,” she said. “You do not give up. It is not God’s plan.”

Marty Preiss, 60, said she found the film both compelling and engaging. She is planning a similar event for a screening at her church in Chicago’s northern suburbs.

The film has also been well received by health care professionals. “I have never recommended a film on the end of life before. But people deserve to see “Consider the Conversation” because it deepens our passion for life and enriches our lives,” wrote Compassion and Choices’ Barbara Coombs Lee.

“Consider the Conversation” has won multiple awards, including the Award of Excellence in End-of-Life Care from Agrace HospiceCare and the Silver Award of Excellence: Best Documentary or News Special from the Milwaukee Press Club.

Part two: “Consider the Conversation: A Documentary About Unintended Consequences” will be released early next year.

Learn more from the Life Matters Media Newswire:

Psychological responses to end of life

The Breakers offers advice for caring for elderly parents

January 14, 2013

Life Matters Media featured in The DePaulia

Life Matters Media’s Daniel Gaitan shared his thoughts on the Oscar-nominated “Amour” and the importance of advance care planning in The DePaulia.

‘Amour’: Discussing death and dying

How do you care for a suffering loved one? “Amour,” the sublime French-language nominee for best picture directed by Michael Haneke, encourages discussion surrounding the end-of-life by highlighting the pain one aged couple faces navigating caregiving, medical treatments and death.

Amour’s first scene takes place in an elegant Parisian apartment. Firefighters bash in the doors and cover their noses from the smell of human decay. They proceed to the bedroom, only to find a woman’s corpse wreathed in carefully arranged flowers. The rest of the film is flashback.

The apartment belongs to Georges and Anne, a posh couple in their eighties who care deeply for each other. They have been married for decades and are finally enjoying the rewards of having lived successful music careers. However one morning, Anne (Emmanuelle Riva) goes into a catatonic state during breakfast. This state triggers a flurry of health problems, including paralysis. Georges (Jean-Louis Trintignant) dutifully does the best he can to care for her. He promised he would not put her in a nursing home or let her die in a hospital. The film suggests they do not have advance care directives, a living will or power of attorney. If they did, the film would have ended much differently.

Planning for the end of life

Advance care planning involves learning about the types of decisions that need to be made in case of a medical crisis and aims to ensure an individual’s desires are carried out.

One common form of planning is a living will, a written document that tells doctors how a patient wants to be treated if incapable of making decisions about emergency treatment, according to the National Institute on Aging. A power of attorney is a legal document that names a healthcare proxy, someone to make medical decisions on behalf of a patient unable to do so.

Read the rest at The DePaulia.

Learn more from the Life Matters Media Newswire:

‘Amour’: A film takes on death and dying

Organ transplants: Who should receive them?

Hospice enrollment policies contribute to underuse of care

December 28, 2012

Spirituality at end of life: Practitioners remain hesitant

Physicians and nurses at Boston medical centers cited a lack of training as the main reason why they rarely provided spiritual care for their terminally ill cancer patients, even though most patients considered it important to their end of life care.

A new study published in the Journal of Clinical Oncology reports that out of the 204 physicians from four medical centers who participated in the three year study, just 24 percent reported providing spiritual care. Among the 118 nurses, only 31 percent reported providing care.

“I was quite surprised that it was really just lack of training that dominated the reasons why,” senior author Dr. Tracy Balboni, an oncologist at the Dana-Farber Cancer Institute in Boston and researcher of spirituality, told Reuters Health.

Spiritual care may range from prayer with a physician or nurse to recommendations for a hospital chaplain.

Spiritual care “is considered by patients to be an important aspect of end of life care and is also associated with key patient outcomes, including patient quality of life, satisfaction with hospital care, increased hospice use, decreased aggressive medical interventions, and medical costs,” Balboni said.

Even though current palliative care guidelines encourage medical practitioners to mind religious and spiritual needs that arise during a patient’s end of life care, most medical practitioners remain silent. Ninety-four percent of patients with advanced cancer had never received any form of spiritual care from physicians.

Spiritual care may become more common in the future, however. “There was a time when nurses and physicians may have said, ‘That’s not my job,’ but I think the tides are changing,” said palliative care researcher Betty Ferrell of City of Hope, a cancer research center in Duarte, California.

“I think we are realizing we can no longer ignore this aspect of care,” Ferrell told Reuters. She’s a professor of nursing who was not involved in the new study.

Study researchers suggest more spiritual care training for physicians and nurses. The study found only 13 percent of doctors and nurses reported having such training. However, those who received training were almost 11 times more likely to provide spiritual care to their patients than those who had not.

Learn more from the Life Matters Media Newswire:

Beyond “The Sessions”: Intimacy at end of life

Catholic hospitals: Doctrine trumping patients’ wishes

Is hospice care really best?

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