Category: Advance Care Planning

Covering news of living wills, durable power of attorney for health care, do not resuscitate orders, physician orders for life-sustaining treatment, organ and tissue donation and other similar directives regarding the end of life.

Preparing for a Good End of Life: TED Talk by Judy MacDonald-Johnston

Planning for the end of life is both practical and allows for peace-of-mind during one’s last days, said multimedia entrepreneur Judy MacDonald-Johnston in her brief presentation for TED.

Her TED Talk, “Prepare For A Good End Of Life” sought to identify five best practices in planning for death. “We all think a lot about how to live well. I’d like to increase our chances of dying well,” she said.

“Most people say, ‘I want to die at home’– 80 percent of Americans die in a hospital or in a nursing home,” MacDonald-Johnston said. “Saying we’d like to die at home is not a plan.”

A real plan involves answering straightforward questions about the end you want and having able, willing advocates ready to follow your wishes through– whether it be in the ER or hospital room. Choosing the right caregiver is also important for those planning for end of life, and she advises not settling for just anyone or any elder care community. “Assess your personality and financial situation,” she said.

Last words should be carefully crafted. “When you hear it’s okay to let go, you will,” she said. “What do you want to hear at the very end?”

MacDonald-Johnston launched Goodendoflife.com in 2013, featuring a set of downloadable worksheets and tips aiming to help those facing the end of life do so with confidence. Five documents mirror her TED presentation: “Make A Plan,” “Recruit Advocates,” “Be Hospital Ready,” “Choose A Place And Caregivers” and “Discuss Last Words.”

Providing resources and support pertaining to the end of life is a sharp departure from MacDonald-Johnston’s work as a publisher of reading tools for young children. She co-founded the company Blue Lake Children’s Publishing.

“I am not a geriatrician. I design reading programs for preschoolers. In the last few years, I helped two friends have the end of life they wanted. I learned a few things about how to have a good end of life. At the end, our bodily functions and independence decline,” she posted for Good [End of] Life. “I wanted to share what I learned from my friends’ successful approach to the end of life.”

Due to advances in medical technologies, health often declines over a increasingly long periods-  making advance care planning more imperative. “Advance care planning is a dynamic process that evolves over time as a person’s health goes from well, to ill, to ultimately terminal,” LMM co-founder Mary F. Mulcahy, M.D., wrote for The Huffington Post. “Medical advances have led to few cures of illness, have prolonged the experience of living with chronic illness and have prolonged the process of dying.”

MacDonald-Johnston’s advice is resonating– her Ted Talk has been viewed more than 350,000 times since Feb. 2013.

More from Life Matters Media:

Beyond “The Sessions”: Intimacy at end of life

Resuscitation efforts death ritual in Western medicine

Telling your child about terminal illness

Resuscitation efforts death ritual in Western medicine

REL and MED

Although palliative care and hospice service have improved the death experience for many Americans, demands for non-beneficial resuscitation efforts are still frequent, said neonatologist Kelly Stuart at the Second Annual Conference on Religion and Medicine in Chicago Tuesday.

Medicalizing the death experience promotes dualism, Stuart said, separating both body and soul and death ritual and medicine. She said dualism does not attend to the needs of the whole person.

Dualism is more common in the Protestant traditions, because Protestants are largely without rituals. The rituals have been lost since the Reformation and the growth of organized medicine. Rituals become funeral services, usually without prayers for the dead.

“Race has been a disparity in the marketplace, so being black is a negative indicator for advance directives,” Stuart said. Due to a long history of receiving less care than whites, many blacks opt for more aggressive treatments at the end of life.

Blacks are almost twice as likely than others to choose aggressive end of life treatments and decline do-not-resuscitate orders, according to a recent study by the American Journal of Critical Care.

“Predominately Protestant, there is also comfort in redemptive suffering for the black community,” Stuart said.  Thus, many insist everything medically possible be done at the end of life- giving them they care they wanted all along. Resuscitation becomes a sort of death ritual for blacks and other Protestants, almost a Christ-like experience.

The adult children of terminally ill patients often spend months fighting with insurance companies and hospitals for their parents’ medical treatment. Once treatment begins, it can feel like giving up to elect hospice or palliative care.

Only 7.5 percent of hospice patients are black- that is less than half of their population representation in the United States, The Washington Post’s Rob Stein reported in a 2007 article.

Stuart urged reform, because aggressive treatments can lead to more painful deaths. “The American death experience lacks positive ritual, and non-beneficial resuscitation has substituted for death ritual,” she said. The medical community participates in the distortion. She urged families to remove the conversation about the subject from hospitals, and instead speak of it within the context of a family’s faith.

Stuart said she finds it helpful to speak with chaplains about suggestions for non-beneficial resuscitation. “One woman told me I wanted her son to die because he was black, it really offended me. It took me a long time to get over, but you have to come with open hands and build trust,” Stuart said.

More from Life Matters Media:

Many seniors have not organized online information for heirs

Emergency departments account for half of all hospital admissions, study finds

Illinois Senate approves nation’s strictest medical marijuana law

Many seniors have not organized online information for heirs

Only 55 percent of high net-worth adults have organized digital passwords and online login information for their executors and heirs, according to new findings published for Insights on Wealth and Worth. About 60 percent have not specified their wishes regarding access to social or digital media, such as movies and music downloads.

“It’s not only something that needs to be addressed with an individual dying,” Chris Heilmann, chief fiduciary executive at U.S. Trust, told The New York Times. “If an individual becomes incapacitated, people typically plan for someone to have a durable power of attorney so someone can step in and handle your affairs. But now you’re finding the attorney has to deal with your digital issues. They have to access your computer; they have to pay bills for you.”

Five Suggestions
Chris Heilmann’s Five Suggestions

According to the Times, “People need to record their account information and passwords just as they need to make an appointment to draw up a will. And that seems to be the problem.” But organizing is easier said than done, because passwords change frequently and many seniors are reluctant to write down their login information for fear of theft. Many seniors also assume their younger relatives can figure out the passwords for themselves.

Sentimental photos saved on email accounts or financial statements risk being lost to individuals without organized instructions.

Heilmann suggests concerned adults mind his five suggestions to ensuring a seamless transition of data: maintain a list of digital information; send the information to someone trustworthy; let others know who has the information; leave instructions for handling the information; and put all data in an estate plan, updated regularly. Almost 90 percent of those surveyed have at least informed their spouse or partner where such records are kept.

More from Life Matters Media:

Emergency departments account for half of all hospital admissions, study finds

National Institute of Medicine recommends improving end of life care

Illinois Senate approves nation’s strictest medical marijuana law

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
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.

Image: POLST form
Image: POLST form

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

More from Life Matters Media:

Death with Dignity: Vermont House to vote amended end of life bill

Google “Death Manager”: A will for your digital data

Being a friend to someone sick: Advice from author Letty Cottin Pogrebin

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.

"Discovery doodle"
“Discovery Doodle”

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

Preparing for the dementia tsunami, a TEDMED discussion

TEDMED

As millions of aging Americans face cognitive decline, waiting for a cure to dementia is not an adequate plan for the future. So, TEDMED facilitated a live discussion about some possible solutions to the dementia epidemic with health care experts this week, as part of its Great Challenges series.

By 2020, there will be 43 million Americans 65 and older, 15 million 85 and older- double the numbers of 1980. The costs of dementia-related care will more than double by 2040, according to new findings published in The New England Journal of Medicine.

One of the most important solutions will be training all health care professionals about the issues of the aging population, said Dr. Sharon Brangman, a professor of medicine and division chief of geriatric medicine at SUNY Upstate Medical University. ”The fastest growing segment of our population are those people 85 and older, where the biggest risk for Alzheimer’s disease is.”

Echoing Brangman’s ideas about educating doctors and pharmacists was Dr. Guy S. Eakin, vice president of scientific affairs at the BrightFocus Foundation.

“The scale of the problem is huge. Right now, less than 1 percent of our nurses, our physicians assistants, and our pharmacists are certified in geriatrics, but 26 percent of their patient visits are from geriatric populations,” Eaken said. “That’s a huge discrepancy and training programs are necessary.”

The discussion was not intended to formulate concrete solutions, but provoke thoughts about possible remedies to address cognitive disease and the barriers to achieving them. For example, George Vradenburg, the chairman and co-founder of the USAgainstAlzheimer’s Network, noted the lack of funding available for research.

“Today we spend about $6 billion on cancer research, $3 billion on HIV and AIDS research, and less than $500 million a year on Alzheimer’s and dementia research,” Vradenburg said, while acknowledging concern about the sequester’s impact on medical grants through the National Institutes of Health. “The cost problem is an enormous one in this country.”

How can individuals help lower their chances of getting dementia? Brangman suggested exercise- even just walking to the mall from farther parking spots. Vradenburg said there may be a relation between cardiovascular disease and cognitive decline. “Being healthy gives you greater resistance to disease, but it doesn’t stop the disease,” he said.

Still, despite the lack of funding and volunteers in the U.S. for dementia research, “there really is no system doing it better,” Brangman said. “I really think the United States is the leader, we see a demographic shift in the whole world, where there are fewer young people.”

Learn more from the Life Matters Media Newswire:

Dementia more costly than cancer, will become more common

End of life questions from Catholics tackled at National Healthcare Decisions Day symposium

“Death denying” culture unfortunate result of medical innovation, says physician on Healthcare Decisions Day

Death over dinner? There’s an appetite for it

TEDMED 2013 reveals new plan to talk end of life at the table

dinner

When Michael Hebb was 12 years old, his father died in a nursing home.

He suffered from Alzheimer’s Disease, a diagnosis that was rarely discussed in Hebb’s household. “We didn’t know how to talk about death and illness in my family, so denial was the route we chose,” Hebb, a restaurateur and burgeoning end of life care activist, told a capacity crowd at the TEDMED 2013 Conference in Washington, D.C.

Hebb has a hunch that his family’s coping mechanism is prevalent in American culture, and the Portland native is now combining his family’s struggles with his own experiences in hospitality to found Let’s Have Dinner and Talk About Death, a national campaign which Hebb calls a “patient-led revolution at the dinner table.”

Image: Michael Hebb, from Let's have dinner Web site
Image: Michael Hebb, from Let’s have dinner Web site

Expected to launch online this summer, his program will serve as a guide for families and friends to host dinner parties and facilitate conversations about guests’ hopes and fears surrounding the end of life.

“My work is to bring people together, break bread and effect social change,” Hebb says. One harrowing statistic fueled this plan- that about 75 percent of Americans prefer to die at home, but only 25 percent actually do. Hebb argues that giving voice to these preferences is the first way to have them met, and that the dinner table is the perfect setting for this conversation.

“The table is a great magnet that draws us together, holds us in an embrace, and releases us into the world,” Hebb says, and he hosted the first such “death over dinner” last Halloween. Guests were shocked by the premise of the invitation, but once they agreed to join the party, Hebb says they could not stop talking.

“We assume America is afraid of this conversation, but I believe that is a cultural myth,” he says. What is necessary for a successful dinner is the proper invitation, a clear mission and guidance. His Web site, formed in conjunction with the University of Washington Communication Leadership Program, promises such to those wishing to host such a dinner- reading suggestions, conversation prompts and post-party action items.

“The best conversations happen when we are most comfortable, when our guard is down,” Hebb says, and the warmth of intimate gatherings provides a forgiving space to broach a seemingly scary topic.

His hope is that once these conversations take place at the table, guests can then see their physicians from an informed perspective- prepared to document wishes in some form of advance directive.

Hebb acknowledges that the process of changing American attitudes about death will be slow, but he says it can happen one dinner party at a time- to “spark the gentlest revolution imaginable.”

For more information: deathoverdinner.org

-Randi Belisomo

Learn more from the Life Matters Media Newswire:

“Death denying” culture unfortunate result of medical innovation, says physician on Health Care Decisions Day

Gay man claims discrimination after his arrest at hospital

Community cancer clinics turning thousands of patients away

“Death denying” culture unfortunate result of medical innovation, says physician on Healthcare Decisions Day

Advances in medical therapies and technological innovation have led to a “death denying” culture pervading American health care, said Dr. Susie White, an emergency medicine physician at Provena St. Joseph Hospital, during a bioethics symposium at the University of Illinois-Chicago on National Health Care Decisions Day.

National Health Care Decisions Day aims to inspire and educate the public and medical providers about the importance of advance care planning.

White speaking to a room of medical providers, caregivers at symposium on NHCD Day
White speaking to a room of medical providers, caregivers at symposium on NHCD Day

“Many older patients find themselves in a position they never thought they would find themselves in,” White said. “We have gained 30 years in our life expectancy.” Prior to antibiotics and modern therapies, most people died quickly- from infections, malnutrition or fevers.

Now, only 10 percent of Americans die sudden, unexpected deaths, and the sick and dying receive care in hospitals.

These shifts have fueled a “death denying” culture, one in which many wish to suppress or avoid any sign of aging or illness, White said. Families may grow angry at doctors- or even the patient- when treatments fail.

White maintains that palliative care can help patients and their families, and that the relatively recent medical specialty has the potential to reverse this culture of denial. “What we want to do is form a team of doctors, nurses, chaplains, anyone who might be helpful in an individual’s case and help anyone who has a life- limiting disease,” she said. “We want everyone in the family on the same page and smooth transitions.”

Most patients should not begin palliative care during the process of active dying, but rather, much earlier- even at the onset of illness, White said. “Palliative care is not hospice, but is an extra layer of support, that can go along with aggressive treatments,” she said.

The Integritas Institute for Ethics, a program of the John Paul II Newman Center, arranged the symposium, which explored the ethical challenges that arise at the end of life.

Learn more from the Life Matters Media Newswire:

Illinois POLST form released to public

POLST Illinois moves forward

The lack of advance care planning persists

What is your ‘Medical Mindset?’: Dr. Groopman suggests you define it

Dr. Jerome Groopman says when it comes to making medical decisions, he is a “maximalist,” a “technologist” and a “believer.” These qualities color his own choices and advice to patients, and he says they emerged directly from his Jewish upbringing.

Dr. Groopman
Dr. Groopman

We all have a medical mindset, Groopman argues, and it can be easily pinned down and translated for more effective communication in health care. It accompanies us from early childhood through the end of life, whether we are in the role of patient, physician or caregiver. The Harvard University oncologist and author discussed his own mindset and how we can determine ours at the Association of Health Care Journalists Conference this week in Boston, MA.

Culture and upbringing are perhaps the greatest shapers of a medical mindset. Groopman is the son of eastern European immigrants who put physicians “on a pedestal,” he says, and any natural medical intervention apart from the latest technology was viewed “as a throwback to village life.” His oncological training at the advent of bone marrow transplantation reinforced his faith in intense intervention.

When medical decisions must be made, Groopman advises patients to evaluate both their own mindset and that of their doctor. Having the vocabulary to describe mindsets is crucial, and Groopman suggests that anyone involved in such decisions should consider assigning oneself with the following labels. (Select one word from the following three pairs). 

1) Maximalist- “A maximalist is someone ahead of the curve,” Groopman says. They typically favor medication as a first-resort, whether or not there is a proven benefit. Maximalists often choose surgical intervention,aggressive chemotherapy and intensive care.

Minimalist- “A minimalist is someone for whom less is more,” Groopman says. Minimalists do not jump at the chance to take medication, and are far more likely to hold off on any invasive medical intervention. They often believe in “waiting it out.”

2) Believers- “Believers are certain there is a good solution to their problem,” Groopman says. Believers have faith that when they take a pill, they are on their way to better heath. They are generally trusting of physicians and the medical system.

Doubters- Doubters often worry that any treatment may be worse than the disease itself. They delay medication and therapy until absolutely necessary.

3) Technologists- With such a mindset comes a faith in prescription drugs, invasive
therapies and hospital stays.

Naturalists- Naturalists would rather take a vitamin or herbal supplement than any
drug.

Groopman says patients are able to better communicate with their physicians and better assess their end of life preferences if they identify their mindsets. Surrogates are better able to act on behalf of patients if medical mindsets are considered and discussed.

Pamela Hartzband, M.D., Groopman’s wife and an assistant professor and attending physician in the Division of Endocrinology at Beth Israel Deaconess Medical Center, says she agrees with her husband on the importance of evaluating one’s medical mindset. Hartzband and Groopman received similar medical educations, are on staff at the same medical institution, and are married, but her mindset still differs from his.

Hartzband says she is a “minimalist” and a “doubter,” and she hopes to help implement training on medical mindsets in medical schools, as mindsets are often set by young adulthood. The language Groopman outlined has proven beneficial to her as both a patient and a physician. “The language has helped us in our own clinical interactions, and when used, patients have expounded on it,” Hartzband says.

-Randi Belisomo

Learn more from the Life Matters Media Newswire:

Bed sores: New technology decreases occurrence

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

Texas bill would clarify end-of-life treatments

Illinois POLST form released to public

The POLST Illinois Task Force with the Illinois Department of Public Health announced the release of the new Illinois Department of Health Uniform DNR Advance Directive, known as the POLST form.

POLST form
POLST form

POLST was developed in Oregon in the 1990s, and now 14 states have POLST programs. Twenty-eight states are considering the use of POLST forms.

POLSTs are more detailed than conventional living wills or advance directives. They allow patients 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 care settings and direct doctors to provide or withhold lifesaving treatment.

Learn more about the Illinois POLST

Would a POLST form have prevented the Bakersfield CPR drama?

POLST Illinois moves forward

POLST coming to Illinois