Facebook Helps Users Plan For Their Digital Death

Facebook Helps Users Plan For Their Digital Death

Posted on Friday, February 13th, 2015 at 6:13 am by lifemediamatters

Legacy contact timeline. Courtesy Facebook

Legacy contact timeline. Courtesy Facebook

Facebook has added a new feature that allows users to indicate who will have access to their social media account after death.

Users in the U.S. now have the option of appointing a “legacy contact.” Once Facebook is informed of an individual’s death, the appointed contact will be able to download and archive the decedent’s photos, posts and profile information shared through the social networking service.

The “legacy contact” will neither be able to login as the person who died nor view private messages. Users can also choose to have their Facebook account permanently deleted.

“Facebook is a place to share and connect with friends and family. For many of us, it’s also a place to remember and honor those we’ve lost,” according to a press statement. “When a person passes away, their account can become a memorial of their life, friendships and experiences.” Users can change their preferences through the website’s security page.

Prior to the update, Facebook offered only a static “memorialized account,” which although viewable, could not be managed by anyone. Memorial profiles will remain, but the redesign now places “remembering” above the decedent’s name. The “legacy contact” may pin posts to the timeline or update profile pictures.

Facebook, originally designed for college students, now boasts more than one billion active users. In recent years, memorial profiles have become places where family and friends grieve and interact with each other.

In 2013, Google began offering a similar tool allowing users to decide who will have access to their “digital file cabinet,” often consisting of photos, files and emails.

“I think it’s great that Facebook, which I consider a powerhouse in the social media world, is taking additional steps to let loved ones actually control the page of one who has passed,” said Ronette Leal McCarthy, legal counsel to Elements, the cremation company and end of life care advocate. “I also find it incredibly exciting, because this is another way for death to be discussed among users and younger people.”


Mementos Mori: Chicago Shadow Puppets Explore Death And Disaster

Posted on Saturday, January 17th, 2015 at 9:37 am by lifemediamatters

Photo by Marc Perlish

Photo by Marc Perlish. Courtesy Manuel Cinema.

Hundreds gathered at the Museum of Contemporary Art Thursday evening for “Mementos Mori,” a riveting exploration of death, disaster and chaos. Presented as part of the Chicago International Puppet Theater Festival, an innovative group of performers used paper puppets, live music and overhead projectors to tell three overlapping stories in which death targets unsuspecting individuals.

Manuel Cinema, a Chicago-based puppet company, offered a “meditation on how digital culture is changing our relationship to death and dying.” Death, disguised as a young and stylish blonde, is only notified of her next target by a smartphone app called “Reapr,” a play on the adult matchmaking service Tinder.

Her three victims– a twenty-something delivery woman, an unemployed middle-aged smoker and a grandmother– struggle with day-to-day tasks until she arrives to claim them. Death is impartial and may arrive at any moment, whether it comes as a result of a heart attack, a car crash or complications of old age. Much of the silent production focuses on a seven-year-old girl who must confront her own mortality.

“Mementos Mori” is a play on the Latin phrase meaning to “remember death.”

The audience remained transfixed throughout the brisk 90-minute performance. Audible gasps and sighs echoed during some of the more emotional moments.

“I’ve never seen anything like this before. I am fascinated by death and read a lot about it,” said Amanda Mobley, a 25-year-old strategist. “It’s fascinating to think about what happens to you after you die, and what it means to be alive. The technological aspect of the play is interesting, because everything we do now will live forever on the Internet.”

Many left the theatre tweeting and sharing their reactions on other social media platforms.

Mementos Mori runs through Jan. 18. Tickets are available here.


Chicago End-Of-Life Care Coalition Hosts Fall Benefit

Posted on Tuesday, November 11th, 2014 at 8:42 am by lifemediamatters

Nearly 100 medical professionals, storytellers and patient advocates attended the Chicago End-of-Life Care Coalition’s annual fall benefit, an effort that raised funds supporting the organization’s educational programming throughout the Chicago area. The event, “An Afternoon of Stories,” was presented with Stories on Stage, one of the city’s only live, dramatic short story reading series.

One-by-one, performers shared emotional, often comical, stories about death and dying as guests sipped craft beers at Revolution Brewing in Chicago’s Logan Square neighborhood.

Dr. Charles Rhee, an assistant professor of medicine at the University of Chicago’s Center for Geriatrics and Palliative Medicine, said he appreciated the nonprofit organization’s commitment to educating the public about the importance of end of life conversations and advance care planning.

“It’s amazing to see such a gathering of people united for such a cause, and the performances really highlighting the joys and terrors of the end of life,” he said. “I think end of life discussions are taboo in America because of our health care system. We talk so much about cures and extending life as long as possible, and we forget about death. The most natural things in the world are birth and death.”

Rhee said his favorite story of the night was “Lilacs” performed by Brendan Kelly, partly because of its focus on HIV/AIDS and its “dark and powerful” tone. The script sampled fiction from acclaimed author and activist Dr. Abraham Verghese.

Brendan Kelly performing "Lilacs"

Brendan Kelly performing “Lilacs”

Rachael Telleen, project director for POLST Illinois, said she was encouraged by the diversity of the attendees.

“Seeing people of different ages, seeing people with an interest in end of life, having so many supporters is fabulous,” she said. “I hope the CECC helps the POLST form become more common and accepted, especially as people keep aging.”

POLST is more detailed than conventional living wills or advance directives- these medical orders extend patients the freedom to indicate preferences regarding resuscitation, intubation, intravenous antibiotics and feeding tubes, among other things. POLST is an updated version of Illinois Department of Health Uniform DNR Advance Directive and is intended only for the terminally ill.

The evening was sponsored by several end of life care organizations, including Midwest CareCenter, Rainbow Hospice and Journeycare.

“I love the fact that people are willing to come and hear stories about death and dying,” said Ronette McCarthy, legal counsel for Elements, the cremation company and a member of the CECC’s board of directors. “I look at the CECC as one of the only collaborative end of life groups in the Chicago area. It consists of physicians, attorneys, chaplains, doctors and social workers.”

Life Matters Media founders Dr. Mary F. Mulcahy and Randi Belisomo are members of the CECC.


Meeting Encourages More Comprehensive End Of Life Care

Posted on Monday, November 10th, 2014 at 1:51 pm by lifemediamatters

This piece was first published in Reuters Health. President Randi Belisomo is a contributor.

Randi BelisomoPhysicians turned to contemplative techniques last week in New York to learn how to improve end of life care and handle the stress, burnout and communication challenges faced in caring for seriously ill patients.

“There are skills that are not often talked about in medical schools that can be taught and learned, and it begins with self-care and developing empathy for one’s self,” said Robyn Brentano, executive director of the Garrison Institute in Garrison, New York.

The Institute, overlooking the Hudson River, is housed in a former Capuchin monastery and hosted close to 200 attendees at its symposium on communication and the interpersonal relationship within palliative and end-of-life care.

The conference centered on developing compassion and mindfulness among practitioners, so they may be more “fully present” with patients coping with physical, emotional and existential struggles often accompanying one’s final days, Brentano said.

Dr. Ira Byock, chief medical officer of the Providence Institute for Human Caring, considered the gathering a “master class” to discuss deeper levels of caregiving strategies.

“The entire culture of health systems approaches illness and dying through the lens of a medical problem,” Byock said. “But illness and dying are deeply personal experiences for the individual who is ill and the people that love that person.”

An Institute of Medicine (IOM) report released this fall – titled Dying in America – cited deficiencies in education and development among end of life care providers nationwide. The knowledge base of all clinicians needs improvement, according to the IOM, and is in urgent need of translation to bedside care.

Byock instructed attendees in the therapeutic use of imagination. The techniques are aimed at helping the providers perceive opportunities for growth during the end of life.

“We can look at the future as if we were shoulder to shoulder with a patient on a journey neither of us could choose,” Byock said. “Perceiving what is possible to have value or meaning to the person without it in any way discounting or diminishing the unwanted fact they can’t reverse the illness.”

That imagination often relies on narrative techniques in medicine, such as soliciting a patient’s life story to discern what inspires his or her individual life with value and meaning.

GARRISONNarrative medicine is a field pioneered by Columbia University professor and physician Rita Charon, who is asking attendees to better recognize what their patients may hold central.

“To the extent we can recognize something about patients, we get recognized back,” Charon said. “That’s where the joy comes from for us. It’s not just counting lung nodules on the x-ray. It’s being present in the room with the patient and making things better. It’s not always what we can fix with a pill or another radiation treatment.”

Sometimes, the death experience can be improved with attention to the aesthetics surrounding the patient, says BJ Miller, a hospice and palliative physician and executive director of the San Francisco-based Zen Hospice Project. The attention to design in a patient’s environment is something he is asking providers to notice and improve.

“So much is stripped away, but what you are really left at the moment you die is some sensory input,” Miller said.

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Palliative Medical Teams Encouraged By Institute Of Medicine’s “Dying In America” Report

Posted on Friday, October 31st, 2014 at 7:07 am by lifemediamatters

Courtesy the John D. & Catherine T. MacArthur Foundation.

Courtesy the John D. & Catherine T. MacArthur Foundation.

Palliative medicine for the seriously ill should be covered by all payers and provided by all health organizations, said Dr. Diane Meier, director of the Center to Advance Palliative Care, during a presentation exploring new findings about dying in America.

Meier addressed a widely circulated report from the Institute of Medicine (IOM) calling for new public engagement strategies to foster informed decision-making. According to Dying in America, not only do most Americans lack basic understanding about end of life care choices, but community leaders “have not fully utilized strategies to make that knowledge available, meaningful and relevant across diverse population groups.”

Meier, a member of the IOM, helped develop the institute’s five key reccomendations: more person-centered, family-oriented palliative care; better doctor-patient communication and advance care planning; professional education and development; better policies and payment systems; and more public education and engagement.

The report cited the present as the best time to help normalize conversations about death and dying, partly because millions of aging baby boomers will require such conversations in the near-future. It also pointed to the social trends of health consumers’ willingness to pursue high-quality care, a growing urge to share stories about end of life care experience that resonate across diverse populations and engaged leadership within local communities.

“When the IOM says that something should be done, there is enormous imprimatur, legitimacy and influence on the zeitgeist about what’s acceptable to talk about,” Meier said. The IOM acts under the National Academy of Sciences through its congressional charter as advisor to the federal government. It is nonpartisan and funded by a network of donors, endowments and contracts.

Meier acknowledged the difficult nature of changing federal policies and payment systems involving end of life care, partly because of political polarization surrounding the Affordable Care Act– the health reform law signed by President Obama in 2010 and recently upheld by the Supreme Court.

Thirty percent of likely voters when polled said the law allows government “death panels” to make decisions about patients’ end of life care, a theory discredited by most medical professionals.

American Cancer Society Adverrtismemnt

American Cancer Society Advertisement

“We have a real challenge to improving accurate information and understanding on the part of the public about what palliative care is about and what it’s not,” she added. Palliative medicine is usually provided only to the terminally ill to help treat symptoms and side-effects of disease and aggressive treatments. The goal is not cure.

Meier mentioned a handful of national campaigns helping familiarize Americans with the benefits of comfort care and advance care planning, including a major effort from the American Cancer Society’s Cancer Action Network.

“We are working with disease-specific organizations. When a patient googles lung cancer, two things come up: the Wikipedia page and the American Cancer Society or other disease-specific organization,” Meier offered. “Through our partnership, we have developed a series of ads talking about palliative care that sees the patient beyond cancer treatments.”

Part of the cancer network’s “Quality of Life” campaign includes advertisements in magazines. One depicts a female cancer patient looking upward with the word “chemotherapy” written below. The “che” and “apy” are crossed out in purple, highlighting the word “mother.”