Life Matters Media Announces New Multimedia Site
Posted on Tuesday, June 25th, 2013 at 12:00 pm by Life Matters Media
Life Matters Media’s new multimedia website has launched!
Two years after they joined forces with an idea, Life Matters Media co-foundersRandi Belisomo and Dr. Mary F. Mulcahy announce that lifemattersmedia.org is now live and providing news and up-to-date information about end of life-related issues.
Life Matters Media features expert columnists offering diverse perspectives and counsel regarding various subjects and trends associated with advance care planning, health care costs, legal issues, faith and caregiving. Bruce Japsen, a Forbes Magazine health care contributor, and Michele Weldon, an associate professor of journalism at Northwestern University’s Medill School, are two such contributing writers.
Life Matters Media aims to empower patients about their end of life choices, Belisomo told friends, family and supporters at the Life Matters Media launch party Sunday. “Last year we started with the Newswire and now we have the new, complete multimedia website,” Belisomo said.
Visit lifemattersmedia.org for more complete coverage of end of life-related issues, expert columns, medical analysis and first-person multimedia narratives from those navigating life’s final phase. The Life Matters Media Newswire will continue to operate and provide coverage for Life Matters Media.
Death With Dignity: Vermont House To Vote Amended Bill
Posted on Monday, April 29th, 2013 at 4:39 pm by Life Matters Media
The Vermont House will soon vote on a more stringent version of the Senate legislation known as “Death with Dignity.” The House legislation would grant physicians the ability to prescribe life-ending drugs to some terminally ill patients; however, the bill has more caveats, such as mandatory hospice enrollment.
Several weeks ago, the Senate whittled down its 22-page bill to just two pages, simply granting doctors immunity from prosecution for supplying life-ending drugs to any terminally ill patient with less than six months to live.
But with a 7 to 4 vote, the House Human Services committee backed a new bill restoring much of the process the Senate version eliminated, such as the requirements for both oral and written requests, and a 48-hour waiting period before filling a prescription. Furthermore, it requires every prospective patient to have an advanced directive and be enrolled in hospice, VPR’s Bob Kinzel reports.
“We have all of the safeguards that they have in Oregon. We have a 15-year track record in Oregon with this law,” said Rochester Rep. Sandy Haas, a Democrat who helped overhaul the Senate’s bill.
Oregon mandates patients verbally request life-ending drugs to their physicians, followed by a 15-day waiting period and then another verbal request. Patients also must submit written requests. Then, they wait 48-hours before picking up the barbiturates.
“That bill was about doctors. The bill we passed this morning is about patients,” Haas said. “The Senate bill purports to be immunity for doctors for malpractice, basically for misprescribing, for confusing patients about what happens.”
Republican Rep. Anne Donahue from Northfield, said she worries the new version will make it easier for families to coerce loved ones into committing suicide. “A person can then wait a month or two or three or more before actually taking (the drugs),” Donahue said. “And at that point there’s absolutely no protection about coercion, family pressures, financial pressures and even whether a person still has the capacity to make that decision.”
Donahue said she favors how the Senate version limited the ability of the state to intervene once an individual committed to end his or her life. “I think that the direction that the Senate went made a huge amount of sense and didn’t have the intrusion on rights and the intrusion of the state actually sanctioning suicide,” Donahue said.
A possible vote is set for Tuesday. If passed, the bill would be kicked back to the Senate for a vote. This is the farthest this Oregon-style legislation has advanced in Vermont. Last year, a bill came before the full Senate, but it failed.
Being A Friend To Someone Sick: Advice From Author Letty Cottin Pogrebin
Posted on Wednesday, April 24th, 2013 at 10:01 am by Life Matters Media
Empathy + action = kindness
Pogrebin, a breast cancer survivor, spent most of her presentation telling the emotionally-charged room of fans, caregivers and journalists what not to say or do when friends first learn of a serious or terminal diagnosis.
“The thing that bothered me the most was the gossip,” Pogrebin said, recounting her own diagnosis at age 70.
Upon learning of her cancer, Pogrebin told only her family and 12 “uber-pals.” Humans have concentric circles of intimacy, Pogrebin said, and she told only those she completely trusted.
However, word of her diagnosis eventually reached Pogrebin’s outer circle of friends and acquaintances. Someone let the secret slip.
Pogrebin soon became inundated with concerned calls from acquaintances and colleagues. With each conversation, Pogrebin felt forced to once again explain her diagnosis, and in turn, she relived painful emotions. “My advice: Tell everyone so you can tell them all at once.” If she could rewind and do it a different way, Pogrebin would have sent a mass email to both explain her diagnosis and ask not to be disturbed.
Furthermore, Pogrebin insisted these phrases should never be uttered to a sick friend:
“Oh my God!”
“How are you?”
“You look great!”
“It’s God’s plan.”
These phrases, she said, can sound both fake and cliche. “Do you really want to know how I am? Did I not look good before?” Pogrebin laughed.
Instead, she advised that it may be more prudent to say something such like, “I’m so sad for you” or “I will be here for you, the moment you need it, and I mean it.”
Sometimes, Pogrebin said, family and friends visit just to make themselves feel better. “But what about the patient?” The sick person has to entertain the guests, get dressed, explain their most traumatic moments, and wonder if the person really even cares to know the full story. She suggested friends call before a visit, or plan a future date for dinner- once the patient starts feeling better.
Keeping The Dead Among Us
Posted on Tuesday, April 23rd, 2013 at 9:08 am by Life Matters Media
One Indonesian culture could offer new perspective on the end of life in America
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.”
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.”
Life Matters Media Participates In “Great Challenges”: Caregiver Crises
Posted on Monday, April 22nd, 2013 at 3:17 pm by Life Matters Media
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.
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)
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