Keeping the dead among us

One Indonesian culture could offer new perspective on the end of life in America

Image: Toraja burial site, Wikimedia Commons
Image: Toraja burial site, Wikimedia Commons

When members of the Toraja ethnic group of eastern Indonesia tell you the dead live among them, they don’t mean that figuratively.

Corpses of loved ones often remain in households for up to two years until a traditional funeral can be held, and in the interim, family members symbolically feed and bathe the body of the deceased.

Kelli Swazey, a cultural anthropologist at Indonesia’s Gadjah Mada University and wife of an ethnic Torajan, told an audience gathered at the TEDMED 2013 conference in Washington, D.C. that a careful examination of her husband’s native culture has reshaped her views on death and could be helpful in allaying common American fears surrounding the end of life.

“Death is the most visible and remarkable aspect of the Torajan landscape,” Swazey says, describing the typical sight of one or more corpses in a Torajan home.

Funerals in this culture are elaborate, often stretching days or weeks. Because they are so expensive to carry out, the average family may need months or years to save the funds needed for such a ritual. In the time prior to funerals, bodies are placed in special rooms of a family’s household, symbolic of that family’s identity.

Swazey says this period of Torajan transition serves as a gentle way to come to terms with loss and to properly grieve.

“They socially recognize and culturally express what many of us feel to be true,” Swazey argues. “Our relationships with certain humans and their impact on our social reality does not cease with death.”

Image: Toraja burial site, Wikimedia Commons
Image: Toraja burial site, Wikimedia Commons

As Americans see death as an unquestionable reality, Torajans view it as a part of a larger social genesis.  Dying is a process for the entire Torajan community, Swazey says, not solely a biological definition. Examining death this way removes some discomfort towards the physical realities of dying.

Because the bodies of the dead are revered and attended to for such lengthy periods, death is not only honored, but normalized in the Torajan culture, she says. Prolonging life in the face of debilitating illness is unheard of in this culture. Torajans view human life as having a pre-set length of thread that should be allowed to unspool to its natural end.

When illness strikes in our own western culture, Swayze says “we decide whether to stretch that thread of life based on emotional ties between us.”

As global citizens, she says we can’t afford to devalue knowledge because it emerges from a place so foreign and one that most Americans don’t understand. A cultural shift in perspective could be what is needed to transform end of life care and the frequent use of heroic, costly and often futile treatments for the dying.

“If we entertain and value other knowledge about life, including views on death, it can change the way we die, but more importantly, it could transform the way we live.”

-Randi Belisomo

More from the Life Matters Media Newswire:

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

Preparing for the dementia tsunami, a TEDMED discussion

Choosing not to eat and drink: Some terminally ill hasten death

Life Matters Media participates in “Great Challenges”: Caregiver crises

Life Matters Media is proud to participate in the TEDMED “Great Challenges” program, sponsored by the Robert Wood Johnson Foundation. The caregiver crisis has been designated as one of the twenty “Great Challenges” in health and medicine. The program’s mission is not to solve the caregiver crisis, 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 the caregiver crisis. 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 stem from sharing true narratives- not data.

Below is the “Discovery Doodle” by graphic recorder Robbie Short, depicting some of the challenges offered by program participants in coming to grips with the caregiver crisis.

"Discovery Doodle"
“Discovery Doodle”

An estimated 44 million people provide care for the elderly, disabled, sick and injured. Caregivers have few tools and few support systems as they carry out their tasks, and they receive minimal, if any, training for these responsibilities.

Here are some of the contributing factors that make the caregiver crisis such a pervasive health and social problem, as offered by “Great Challenges” team members:

-Lack of recognition by payers, providers, employers and regulatory agencies on the value and financial impact family caregivers bring the health care system. (Cheri Lattimer, Consulting Management Innovators)

-Emotional isolation and lack of support (paid and unpaid) to help a family caregiver balance his or her life. (Suzanne Geffen Mintz, National Family Caregivers Association)

-The graying of the U.S. – 10,000 Americans turn 65 every day (Alan Blaustein, CarePlanners)

-Randi Belisomo

More from the Life Matters Media Newswire:

Hope or Denial in the Face of Death?

Preparing for the dementia tsunami, a TEDMED discussion

Death over dinner? There’s an appetite for it

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

The future of caregiving could be a talking dog

Pet avatars offered as a solution to caregiver crisis at TEDMED 

The thought of virtual pets evoke 1990s toy memories for millennials, but a new incarnation of such may help stave off dementia in their grandparents- and provide them  enriching social connections.

GeriJoy companions, virtual “talking dogs,” are now providing pet therapy, personal companionship and computer services to the elderly, and peace of mind to their long-distance loved ones.

“We’ve transformed what it is like to be a caregiver,” said GeriJoy CEO Victor Wang, as he presented his tablet-based software at the TEDMED 2013 conference in Washington, D.C.

Wang says he was inspired to create the real-time avatars as a result of his family’s experience emigrating from Taiwan- and his grandmother’s subsequent deep depression as she remained behind, alone in their home country. His parents could not afford to employ the services of a caregiver, so they lived in fear that his grandmother would harm herself, while they were rendered helpless.

“We can help increase seniors’ self-worth and improve their mental health,” Wang says, noting that more than 800,000 Americans suffering from Alzheimer’s disease live alone, and that more than half of those lack a caregiver. These numbers are expected to exponentially increase in the next two decades, and the current four-to-one ratio of able-bodied caregivers per senior is expected to drop to one-to-one.

“There are not enough real people in the U.S.,” says Wang, and he sees his GeriJoy companions as a solution to not only providing seniors with emotional interaction, but capable of updating scattered family members with the condition and overall well-being of their loved one.

Each avatar is monitored 24 hours a day by GeriJoy staff who are available to engage each virtual pet in dialogue with its senior. Relatives can use the company’s website to upload photos and updates for seniors to view and talk about with their companion. GeriJoy staff log the content of each interaction online, so that family can see how their loved one is faring.

Wang predicts that his software will soon be helpful in detecting senior abuse and accidents, as well as have the capacity to provide daily medication and activity reminders.

Wang says GeriJoy is changing the traditional definition of caregiver. “It’s about the joy, conversations, friendships and health that comes from all of this and the relationships that we build.”

To learn more: www.gerijoy.com

-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

Hope or denial in the face of death?

Pulitzer Prize winner recounts personal love story

Bennett 8.57.34 AM
Bennett family picture

What medical experts call denial, Amanda Bennett calls hope.

The Pulitzer Prize winning journalist and caregiver to her husband, Chinese historian Terrence Foley, sought to reframe the role of denial in the face of terminal illness during her presentation at the TEDMED 2013 conference in Washington, D.C.

“Denial isn’t even close to a strong enough word to describe what those of us facing the death of our loved ones go through,” says Bennett, whose recent book, The Cost of Hope, outlines the story of her quarter century romance with Foley, with whom she traveled the world and had two children.

Despite his cancer diagnosis, Foley thrived personally- traveling with his family to multiple continents, coaching Little League and even earning his Ph.D. in his 60s.

“We had a heroic narrative for fighting together, but we didn’t have a heroic narrative to letting go.”

Mysteriously, Bennett says, he continued to surpass all expectations. Meanwhile, she buried herself in internet research in search of a cure that was not to be found.

His health dramatically declined in December 2007, and as Foley began to spit blood during what would be his last stay in intensive care, his doctors asked Bennett what she wanted them to do.

The couple had advance directives in place, directives that ordered doctors to do nothing if no further hope was to be had.

“Keep him alive if you can,” she told his physicians. After all, Foley had repeatedly dodged all dire predictions for the past seven years and had recently started a new regimen of experimental therapy. Bennett continued to hang on to the slightest of indications that he could continue to live.

As her husband’s health worsened over the next week, she grew more resolute. “We believed if we were smart enough, strong enough, brave enough and worked hard enough, we could keep him from dying forever,” Bennett recalls.

But Foley died December 14th, 2007, and Bennett says she never said goodbye.

“We pushed the fight right over the edge, and I never got the chance to say to him, ‘hey buddy, it was a hell of a ride,’ ” Bennett remembers, noting in retrospect, that no wife- no matter how hard she tries- can stop the bravest of husbands from dying when it is his time.

Hope

Bennett would not consider hospice, because to her it meant defeat.

“We had a heroic narrative for fighting together, but we didn’t have a heroic narrative to letting go,” Bennett says, suggesting there are many “noble” paths available for curing disease, but no such culturally “noble” path to die.

If she had been able to shift her perspective, she says, perhaps watching Foley die would have been easier on them both. That perspective could be broadened: from fear of hopelessness at the end of life to, instead, repeated victories in the face of cancer, a lengthy battle, and then a graceful retreat in death.

“Not even the greatest general defeats every foe,” Bennett says, and such a framework of a triumphant, manly crusade through illness into death would have been a much more workable mindset than hope- and the subsequent lack of it.

Death, she argues, is not the enemy, but she knows most think it is.

“I believed I could keep him from dying, and I would be embarrassed to say that if I hadn’t met so many people who have felt the same way.”

For more of Bennett’s story: thecostofhope.com

-Randi Belisomo

More from the Life Matters Media Newswire:

Preparing for the dementia tsunami, a TEDMED discussion

Death over dinner? There’s an appetite for it

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

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

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

On National Health Care Decisions Day, the Integritas Institute for Ethics hosted a symposium to explore the ethical challenges that arise at the end of life. Roman Catholic physician Ely Wesley, a Vanderbilt University pulmonary and critical care specialist, warned fellow doctors at the University of Illinois-Chicago against the hastening of death, a process that he argued breaks both the laws of God and nature.

Wesley speaking to a room of medical professionals about the "double effect"
Wesley speaking to a room of medical professionals about the “double effect”

The physician told a room of medical professionals, graduate students and caregivers that his Catholic faith shapes his medical practice, and that the two are inextricably intertwined. “People in this room know people who are struggling with their faith and putting it into context,” he said. “I have no incentive to hasten death.”

During his lecture, Wesley made numerous references to scriptures, prayers and Catholic teaching about death and dying. “Physicians have an opportunity that a priest does not have, and our mission does not end when medicine is no longer of help,” Wesley said.

“Human life is sacred from its beginning to its end,” Wesley said, pointing to the teachings of Pope John Paul II. Even though death is not “an awful situation,” since it baptizes the faithful to Christ, he argued that hastening death removes the dignity of the ill and aged.

“How can we do a better job for our older people?” he asked, and decried secularism, ageism and the ongoing political debate about assisted suicide.

“Euthanasia is a grave violation of the law of God,” Wesley said, referencing current battles in many states over “Death with Dignity” legislation. “If you’re not religious, then it violates natural law.”

What Wesley called the “double effect” is preferable, he said, for people of faith. “Double effect” is a terminal patient’s death due to excessive pain medication. This type of death is justifiable, Wesley argued, because it does not aim to end life- only to treat pain.

Image: The Pieta, Wikimedia Commons
Image: The Pieta, Wikimedia Commons

“It’s scary” that people can purchase ways out of life, he said, noting the rising use of the “exit hood,” a contraption that allows individuals to inhale helium and end their lives. The public support and national popularity of Dr. Kevorkian- a pathologist convicted of second-degree murder for his role in a case of voluntary euthanasia- is frightening also, Wesley argued.

Caring is an honor, Wesley said, referencing a Michelangelo sculpture depicting Christ’s broken body after his crucifixion in a peaceful Mary’s arms. “Look at Mary’s face in the Pieta.”

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

Gay man claims discrimination after his arrest at hospital

Roger Gorley was arrested this week in a Missouri hospital after he refused to leave his partner’s bedside. Gorley claims he is a victim of discrimination, and that a nurse refused to verify his joint power of attorney documents.

The 51-year-old was visiting his partner of five years at Research Medical Center in Kansas City, MO when a relative of his partner told Gorley to leave, FOX 4 News reports. According to the police report, an altercation ensued and Gorley was placed in handcuffs.

Gorley

“After several verbal attempts to get Gorley to leave the room, he continually refused and began to cause a disturbance,” according to the report. “He began to cause a disturbance by physically resisting security officers as they escorted him out of the patient’s room.” The hospital wanted him arrested for trespassing and disorderly conduct.

“I was not recognized as being the husband, I wasn’t recognized as being the partner,” Gorley told FOX 4. “All we want is equal rights.” Missouri does not recognize civil unions.

The hospital faced a barrage of criticism on social media, and released a statement on its Facebook page insisting that Gorley was acting outrageously: “This was an issue of disruptive and belligerent behavior by the visitor that affected patient care. The hospital’s response followed the same policies that would apply to any individual engaged in this behavior in a patient care setting.”

On Thursday, hospital officials said that Gorley is welcome back. The Department of Health and Human Services is looking into Gorley’s allegations, The Associated Press reports.

“All Americans are guaranteed the right to receive hospital visitors that they designate, and there are specific protections in our rules for same-sex couples across the country,” said Brian Cook, the spokesperson for the Centers for Medicare & Medicaid Services.

In 2010, President Obama ordered all hospitals accepting Medicare and Medicaid to respect the rights of patients to designate visitors.

Learn more from the Life Matters Media Newswire:

Community cancer clinics turning thousands of patients away

Dementia more costly than cancer, will become more common

Connecticut assisted suicide bill finally gets a hearing