Tagged: Washington

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

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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

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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

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Connecticut assisted suicide bill finally gets a hearing

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Image: Wikimedia Commons

For the first time in Connecticut’s history, the General Assembly’s Public Health Committee allowed a legislative hearing about a physician-assisted suicide bill.

H.B. 6645 aims to allow physicians the ability to prescribe life-ending medications at the request of mentally competent, terminally ill patients. Patients would have to self-administer the drug.

Connecticut’s CBS affiliate reports that because Democratic State Sen. Ed Meyer of Guilford received so many phone calls supporting “Death with Dignity,” he chose to author the bill, which he insists is both compassionate and cautious.

“The bill that we’re hearing today, for example, requires two different physicians to certify under oath that the person is terminally ill, likely to die within six months and is mentally competent to make an informed decision about ending his or her life,” Meyer told WCBS 880.

Washington, Oregon and Montana have already approved the legislation known as “Death with Dignity.”

“If the legislators see the bill as providing a choice, an intelligent choice for people making an informed decision to end their life and end the misery and pain they’re going through at the end of life, I think the bill will go forward,” Meyer said.

However, the bill faces strong opposition from religious and social organizations, such as the Family Institute of Connecticut and Second Thoughts Connecticut. Such opposition could hold-up the bill’s passage.

“We will be killing our vulnerable parents and grandparents through public policy,” said Teresa Wells, a nursing home administrator, according to the Hartford Courant.

The Catholic Church has also been a vocal critic. The Church cites the lack of wait time between the necessary oral and written requests for drugs. Other states require a 15 day wait.

Meyer said he remains open to suggestions.

Proponents of the bill argue it would ensure individual freedoms at the end of life. “The deep yearning for increasing autonomy for patients themselves to have a voice, I think now it’s reaching a tipping point all across the world,” Compassion and Choices’ Barbara Coombs Lee told CBS. “I think the Baby Boomer generation has something to do with that.”

A similar bill was proposed in 2009, but it failed to garner a hearing. Connecticut has banned assisted suicide since the late 1960s.

Read the bill at Connecticut’s General Assembly Web site

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Vermont Statehouse votes “Death with Dignity”

The Vermont Senate Health and Welfare committee unanimously approved the bill known as “Death with Dignity,” which would allow some terminally ill patients to end their lives with prescription barbiturates, Vermont Public Radio reports.

More than 300 people gathered in the Vermont Statehouse Tuesday to voice opinions on the proposed “Death with Dignity.” The law would allow terminally ill patients to end their lives with prescription drugs.

Patients expected to live no longer than six months or less could be given a prescription for a lethal dose of barbiturates. Two physicians are needed to agree upon life expectancy.  Patients also must declare their wish to die three times, once in writing, within a 15-day period.

The joint session of the Senate Health and Welfare and Judiciary committees heard testimony from both sides of the issue. The Judiciary committee has not yet voted.

Judy Murphy, who still mourns the loss of a friend who she said starved herself to death to end her suffering, came to support the act. ”Not everyone would make that choice to die. But many, including myself, would have great comfort in knowing that that option is possible,” Murphy said. “She should have had the choice of death with dignity,” WCAX reports.

“The bill simply offers end-of-life choice,” said another supporter, William Wilson. “Its presence alone is comforting,” USA Today reports.

Lynn Caulfield, a registered nurse, disagreed. ”It is a sad day in Vermont when our lawyers are asking health care professionals to help human beings to die rather than extending compassionate and respectful care to ease pain and suffering,” she said.

The act still needs to pass the House and Senate before being sent to Democratic Gov. Peter Shumlin for approval.

Earlier on Tuesday, Vermont Public Radio reported the Senate Health and Welfare Committee heard from Attorney General Bill Sorrell and former Gov. Madeleine Kunin, both support the bill.

Some opponents of the act say they fear suicide’s definition will change, including Guy Page from Barre. He asked his twenty-something son, who he said struggled with suicidal thoughts as a teenager, about his thoughts on the bill.

“His response shocked me. Shaking with anger and fear he said ‘What hypocrites. Everyday my teachers tell me that killing myself is never an option. But here they are saying that suicide is ‘okay’,” Page said.

In November, Massachusetts voted against allowing physicians to prescribe life-ending drugs to terminally ill patients. Question 2, known as “Death with Dignity,” faced strong opposition from prominent physicians and the Roman Catholic Church.

Physician-assisted suicide is legal in Oregon and Washington.

Last year, a bill came before the full Vermont Senate, but it failed.

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Illinois lawmaker pushes for medical marijuana bill

Illinois lawmaker pushes for medical marijuana bill

An Illinois sponsor of a medical marijuana measure says he may have enough votes to pass the bill in the Statehouse, the Chicago Tribune reports. Rep. Lou Lang, D-Skokie, says his ”nose count” has him near the 60 votes needed for approval of a three-year trial medical marijuana program called the Compassionate Use of Medical Cannabis Pilot Program Act, which would be a first for Ill.

“If members vote their consciences, I’ll have the votes,” said Lang, who fell short a handful of votes last year, although the Senate approved similar previous legislation in 2010.

This season may be different, however, because three dozen lawmakers in the House and Senate are not coming back in the next General Assembly, making them lame ducks, Ray Long reports. “Their votes are more likely to be up for grabs given that they are not expected to face the voters again.”

CBS News reports that advocates of medical marijuana are in Springfield to lobby state lawmakers to approve the use of medical marijuana with strict limitations. The drug would only be prescribed by doctors, in small amounts, to qualifying terminally ill patients or their designated caregivers. Individuals suffering from AIDS, cancer, multiple sclerosis or a “debilitating medical condition” may qualify.

A qualifying patient or caregiver would only be able to legally possess 6 cannabis plants and 2 ounces of dried usable cannabis during a two-week period.

State Rep. Jim Durkin, R-Countryside, opposes the measure because he fears it will make the drug more available. “Just in the last two weeks in DeKalb, there was a 10-pound traffic stop of medical marijuana that came from Oregon,” Durkin said.

The AP reports that Rep. Jim Sacia, R-Freeport, acknowledges that Lang may have enough votes to pass the measure, but the former FBI agent still plans to fight it. “I just see it as a tremendous mistake,” said Sacia.

Lang may bring the measure to vote this week at the General Assembly. He told the AP that there are ”a whole bunch of people who are wavering.” He will work over the weekend before putting the measure to vote, although he may be close to the 60 votes needed.

Medical marijuana supporters have already won local approval for medical use in 18 states and D.C. Voters in Colorado and Washington chose to legalize marijuana, although, the federal government currently lists marijuana as a Schedule I controlled substance, meaning it has no medically accepted use and high potential for abuse.

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In America, death is taboo

Are new technologies and medical treatment making Americans less comfortable with death? The Milwaukee Journal Sentinel has published a feature by practicing cardiologist and former hospice director Bruce Wilson. Wilson recounts an experience he had counseling a friend whose mother declined aggressive cancer treatments for her terminal diagnosis. Wilson’s succinct commentary focuses on the taboo nature of death in America and how the culture is changing that.

Wilson writes about when his friend Jack came to him for support: “Jack’s mother had seen her doctor who had ordered a routine CT scan. Unfortunately, there was evidence of the cancer having spread to her liver. She had explored the options with a number of physicians and had decided that she was not interested in chemotherapy or more surgery to treat her spreading, and therefore terminal, disease.”

Like many in his position, Jack was upset that his mother would no longer be accepting of treatment, even though she could possibly recover. This uncomfortable experience would lead Wilson to explain America’s unnerving relationship with death.

Accepting mortality has become harder because death is now so uncommon. According to Wilson: “Death has become a taboo subject, but it hasn’t always been so. It seems to be feared mostly because as a society we have become so unfamiliar with death. Medical science has evolved very rapidly, and over the past 50 years we have become so good at treating illnesses that we somehow have come to view death as an option. Before heart surgery and angioplasty and antibiotics and chemotherapy, people often died when they got sick.”

Since death has become a taboo subject, hospice care, assisted suicide, or “hastened death” as Wilson calls it, are viewed as giving up or immoral. Hospice care is becoming increasingly popular for its cost and comfort focus.

“The number of hospice patients on Medicare doubled to 1.1 million between 1998 and 2008, according to the federal Centers for Medicare & Medicaid Services. Another estimate of hospice patients this year, from the National Hospice & Palliative Care Organization, put the number at 1.6 million,” writes Jim Doyle for the St. Louis Post Dispatch.

There are a growing number of states allowing assisted suicide. Wilson writes: “Many people in the U.S. are now making choices at the end of life that are viewed by some as radical. Physician-assisted suicide is legal in Oregon, Montana and Washington and is on the legislative docket in one form or another in a number of other states. Massachusetts will vote on this in November.” Wilson believes assisted suicide is more about the quality of one’s last days and not the number of one’s last days.

Learn more about the pending Mass. law here.

Some choose assisted suicide

According to a recent feature in The New York Times: “Dr. Richard Wesley has amyotrophic lateral sclerosis, the incurable disease that lays waste to muscles while leaving the mind intact. He lives with the knowledge that an untimely death is chasing him down, but takes solace in knowing that he can decide exactly when, where and how he will die.” Dr. Richards is based in Washington, which has the Death With Dignity Act.

Katie Hafner’s feature probes the issue of “Right to Die.” She notes critics of the law’s morality, some of whom feel the poor will be unjustly persuaded to die early for financial reasons. Ironically, Hafner notes: “Dr. Wesley is emblematic of those who have taken advantage of the law. They are overwhelmingly white, well educated and financially comfortable.”

The law is similar to what Massachusetts will vote on this fall. According to Hafner: “Two physicians must confirm that a patient has six months or less to live. And the request for the drugs must be made twice, 15 days apart, before they are handed out. They must be self-administered, which creates a special challenge for people with A.L.S.”

Some doctors, such as former president of the Massachusetts Medical Society, Dr. Barbara Rockett, oppose assisted death. “We as physicians must avoid the so-called slippery slope of attempting to save money by doing less for our patients rather than rendering the proper care to them. To substitute physician-assisted suicide for care represents an abandonment of the patient by the physician,” she wrote for Boston.

There is support for the Massachusetts law. Hafner quotes Stephen Crawford of Dignity 2012, “Support isn’t just from progressive Democrats, but conservatives, too.”According to Crawford: “It’s even a libertarian issue. The thinking is the government or my doctor won’t control my final days.”