Why does dying cost more for people of color? New study takes a deeper look

Deep dive looks for causes of disparities in Medicare costs for end-of-life care

Dying_in_America

Dying in America is an expensive process, with about one in four Medicare dollars going to care for people in their last year of life. But for African Americans and Hispanics, the cost of dying is far higher than it is for whites.

And despite years of searching for the reason, no one has quite figured out why.

A new study by a University of Michigan Medical School team tried to get to the bottom of this expensive mystery with the most detailed study to date. The team published their findings today in the Journal of the American Geriatrics Society.

Unlike other kinds of health cost disparities, they didn’t find that the difference could be explained by differences in patients’ income, education, medical conditions or other individual factors such as use of hospice. The differences also persisted after they took into account general health spending patterns in a dying person’s area.

The team also took into account specific factors related to the unique circumstances that are present at the end of life – the first time this has been done. These indicators of patients’ own preferences still didn’t explain the differences in cost.

As a result, the researchers conclude that something bigger, rooted in the healthcare system as a whole, must be going on. After all the other factors were figured in, the cost of that last six months of life was $7,100 more expensive to the Medicare system for blacks, and $6,100 more expensive for Hispanics, compared with whites.

“We need to look harder for the causes of disparities in end-of-life care costs, and look at factors on the provider level and health system level, including family dynamics that may come into play,” says Elena Byhoff, M.D., M.Sc., who led the study while she was a Robert Wood Johnson Clinical Scholar at U-M and is now at Tufts Medical Center.

Byhoff and her colleagues, including U-M end-of-life care researchers Kenneth Langa, M.D., Ph.D. and Theodore Iwashyna, M.D., Ph.D., hope that their study will add to the broader conversation about how to encourage good patient-provider-family interactions in patients’ final years, including the difficult but important questions about advance planning for end-of-life care. Whites were twice as likely as blacks and Hispanics to have an advance directive document in place in the study.

New Medicare coverage for doctor visits that include such discussions may help, Byhoff says. But providers must also act on patients’ wishes as spelled out in advance directives, and families must understand and honor those wishes when the patient can no longer speak for him or herself.

Previous work by Langa and others has shown that end-of-life care costs tend to be lower for patients who have spelled out their wishes to limit treatment ahead of time.

Dying_in_America2

A long-term look

Patient preferences have been seen by many as a key factor in end-of-life cost disparities, but are hard to study. The U-M team found a way to take them into account in their analysis by using data from the Health and Retirement Study, based at the U-M Institute for Social Research.

They gathered data from interviews with more than 7,100 seniors over age 65 with traditional Medicare coverage who took part in the long-term, nationally representative study and died sometime during a 14-year period that ended in 2012.

They also used HRS interviews with the seniors’ survivors, which allowed them to find out if the death had been expected, if the patient had discussed their end-of-life treatment preferences with their survivor, and if they had a formal advance directive in place when they died.

Then, the researchers matched each senior’s survey data with his or her Medicare data, from doctor visits and hospital stays to prescription drugs and home, hospice and nursing home care. HRS participants consented to this analysis as part of taking part in the study.

The researchers used an End-of-Life Expenditure Index developed by the Dartmouth Institute to correct for regional variations in care costs for people in their last year.

In all, 78 percent of the people studied were non-Hispanic whites, 14.5 percent were non-Hispanic blacks, 4.7 percent were Hispanic and 2.8 percent were members of other racial or ethnic groups.

In-depth analysis

At first glance, without correcting for any differences between groups, the Medicare costs for black patients in their last six months of life were 35 percent higher than for whites, and costs were 42 percent higher for Hispanics.

Those differences in cost were cut in half after the researchers took into account a wide range of demographic, socioeconomic, geographic and health status differences among the people in each racial and ethnic group. But still, the final months of a black person’s life cost the Medicare system 20 percent more than those of a white person, and the difference was 21 percent for Hispanics.

That left ‘patient preferences’ as the last factor to take into account. The researchers bundled together the presence of an advance directive, discussion of end-of-life treatment preferences, and the fact that a death was expected, to reflect ways in which patients could express their preferences. They did not have access to the advance directives themselves.

But even after factoring these in, the disparities persisted. The Medicare system paid 22 percent more for the care of a dying black senior, and 19 percent more for the care of a dying Hispanic senior, than they did for a white senior who matched them in more than 20 ways.

The persistence of disparities even after taking into account so many factors makes end-of-life care different from other types of care, where factors such as income, education and ZIP code explain much of the difference in outcomes and spending between racial and ethnic groups.

Finding out what factors make the most difference in the last months of life will mean more research. But in the meantime, the researchers hope their findings will help encourage more patients, providers and families of all racial and ethnic backgrounds to start the conversation before it’s too late, and uphold the wishes of the dying when they’re known.

In addition to Byhoff, Iwashyna and Langa, the study team included John Harris, M.D., M.Sc., a former RWJ Clinical Scholar at U-M. All of the authors are current or former members of the U-M Institute for Healthcare Policy and Innovation.

Complete Article HERE!

The sobering thing doctors do when they die

By Carolyn Y. Johnson

The sobering thing doctors do when they die

In “How Doctors Die,” a powerful essay that went viral in 2011, a physician described how his colleagues meet the end: They go gently. At the end of life, they avoid the mistakes — the intensive, invasive, last-ditch, expensive and ultimately futile procedures that many Americans endure until their very last breath.

“Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits,” Ken Murray wrote.

A new study reveals a sobering truth: Doctors die just like the rest of us.

“We went into this with the hypothesis we were going to see very large differences,” said Stacy Fischer, a physician who specializes in geriatrics at the University of Colorado School of Medicine. “What we found was very little difference to no difference.”

The study in the Journal of the American Geriatrics Society examined 200,000 Medicare beneficiaries to bring some hard data to the question. They found that the majority of physicians and non-physicians were hospitalized in the last six months of life and that the small difference between the two groups was not statistically significant after adjusting for other variables. The groups also had the same likelihood of having at least one stay in the ICU during that period: 34.6 percent for doctors vs. 34.4 percent for non-doctors. In fact, doctors spent slightly more time in the ICU than non-doctors, the study found — not enough time to signify a clinical difference, but suggesting that, if anything, doctors may be using medicine more intensively.

In one regard, doctors seemed to die slightly better than non-doctors: 46.4 percent of doctors used hospice during their last six months compared with 43.2 percent of non-doctors. Doctors also spent nearly 2½ more days in hospice than non-doctors.

But these differences are small, and overall, they are far from the powerful mythology that doctors are dying better than the rest of the populace.

“Doctors are human, too, and when you start facing these things, it can be scary, and you can be subject to these cognitive biases,” said Daniel Matlock of the University of Colorado School of Medicine.

This is striking because it is the opposite of what doctors say they’d prefer. Onesurvey asked doctors and their patients what treatment course they would choose if they were faced with a terminal illness. Doctors said they would choose less medicine than their patients in almost all cases.

Many people have witnessed a death that seemed to be exacerbated by modern medicine: a drug that came with side effects but never seemed to halt the disease’s progress, the surgery that was totally unnecessary and might even have sped up someone’s death. Doctors have seen that happen even more often.

“Patients generally are not experts in oncology, and yet they have to make decisions without knowing what the whole course of their illness will be,” Craig C. Earle wrote in the Journal of Clinical Oncology. “We, on the other hand, have shepherded many patients through this journey toward death.”

That’s why powerful anecdotes about doctors who die better, whose last moments are spent peacefully and with family, give us hope: There is a better way.

But Matlock and Fischer think their data may reveal the odds against the patient, even when the patient is a doctor. The health-care system may simply be set on a course to intervene aggressively.

“These things that encourage low-value care at the end of life are big systems issues,” Matlock said. “And a strong, informed patient who knows the risks and benefits — maybe even they have a hard time stopping the train.”

There are definite limits to the study: It could not control for differences in education or income among people in the sample. Most of the doctors who died were white men.

But the findings may reveal a deep bias that lies at the root of medicine. Fischer pointed out that the entire health-care system is aimed at fixing problems, not giving comfort. For example, a hip replacement the day before someone dies is something the medical system is equipped to handle: Surgeons can schedule it, and health insurance will pay for it. But, Fischer pointed out, if a patient needs less-skilled home care — such as help with feeding and bathing — it’s much harder to write a prescription.

Complete Article HERE!

End Stage: Talking About End-of-Life With Those With Cancer

A nonprofit is partnering with performance artists to stimulate end-of-life discussions.

By MIRCHELLE LOUIS

Cancer cells release a plethora of chemicals that inhibit appetite and affect the digestion and absorption of food’
Cancer cells

No one likes to think about dying, so we don’t. We avoid the “elephant in the room” and talk around the topic. But what happens when, because of some life-threatening circumstance, you are forced to confront the idea of death? At Cancer Support Community North Texas (CSCNT), we see this happen far too often. Emotions run high, making conversations about death and end-of-life care daunting and overwhelming, sometimes even resulting in decisions that would not have been made if there had been some advance conversation and planning.

So what if we don’t avoid that “elephant?” What if we address it head-on, maybe even laugh about it? Maybe embrace the fact that death, like birth, is part of the natural order of things, and that we’re all going to die someday? In the hope of making the important conversation about death a little less overwhelming, and a whole lot less intimidating, CSCNT has partnered with The Final Acts Project, a community-based health education initiative that serves as a catalyst to stimulate end-of-life discussions, planning and legacy building through theater, creative arts and the humanities.

The Final Acts Project, the brainchild of Deborah Kaercher, Ph.D., an expert in public health and grassroots startups, was created to humanize the end-of-life experience. The initiative uses the performing arts and theater to ease the stress and anxiety of planning for our final days. By using laugh-out-loud, single-act performances and “bucket list” parties, Kaercher’s group encourages us to have the tough conversations we would otherwise avoid.

One performance that we just hosted in Dallas was “The Dead Giveaway,” a one-woman, audience-focused conversation that confronted the character’s impending death from cancer as she gave away her possessions to audience members. The interactive quality of this performance — which Kaercher’s group performs across the country — engaged the audience on a very personal level, encouraging empathy and self-reflection. More importantly, the talk-back following the performance addressed questions from the audience about end-of-life planning and advanced directives.

What particularly interests CSCNT about this unique way of broaching a tough subject is that it not only opens doors to better communication between spouses, families and close friends, but it can also lead to better care from medical professionals, social workers and loved ones. That is, by being better prepared, by being up front about our wishes and expectations, we can help direct the care we receive from others.

Rooted in personal experiences as well as evidence-based findings, the statistics on end-of-life care speak volumes: According to data from the Dartmouth Atlas of Health Care, more than one in four Medicare beneficiaries experiences an intensive care unit (ICU) stay during the last month of life. A quarter of Medicare deaths occur in the hospital, even though, in American public opinion surveys, most say they’d prefer to die at home if they were terminally ill. Medicare beneficiaries also would almost always choose to die without mechanical ventilation or medications that would make them feel worse all the time, and yet that describes the dying process for many in our nation’s critical care units.

The good news is that the times are changing. Medicare is now encouraging people to have a greater say in their desired end-of-life care. In fact, they’re now reimbursing doctors for time spent with patients having these conversations. And, organizations like ours and The Final Acts Project are collaborating to encourage people to take more control by doing advance planning that makes talking to doctors and families about end-of-life wishes easier…on everyone.

CSCNT and other cancer support organizations are already well-poised to have these conversations, with existing comprehensive systems of support in place. Now, the goal is to make it feel OK to “talk death” sooner and more comfortably with the people closest to us. So, let’s do this! Lights, camera, action…!

Complete Article HERE!

Opting for a funeral at home: Challenging cultural norms

BY AMY WRIGHT GLENN

HOME FUNERAL

Originally from East Montpelier, Vermont, writer Lee Webster didn’t foresee leading a national organization that provides how-to guidance on caring for the dead, particularly from the comfort of one’s own home.

While Webster volunteered with hospice for years while writing for educational and conservation organizations, she never questioned standard American funeral practices until the day these interests converged.

What led Lee Webster to question commonly held assumptions about funeral rites? What exactly is a home funeral? And why are a growing number of Americans returning to the practice of caring for their own dead?

In courses I teach on pregnancy and infant loss, I highlight the practice of home funerals as potentially healing and positive rituals that bereaved parents can embrace. I often share this moving story of the home funeral of a 5-month-old baby named Burton and refer people to the work of theNational Home Funeral Alliance.

Since 2012, Webster has served on the board and most recently as president of the NHFA – an organization whose growth represents a paradigmatic shift in how Americans understand death/dying. In this interview, Webster reflects upon the significance of home funerals and articulates a vision of how we can care for the dead in a way that is “intentional, well-informed, responsible, and transformative.”

Let’s start with the basics. What is a home funeral?

Home funerals have to do with family-directed caring for, and honoring of, the deceased in the home after death occurs.

From the beginning of time, deaths were handled by close family members. Also, culturally designated after-death caregivers assisted the family in this work. Religious and community groups were often the first volunteer responders. Usually a birth midwife, or someone else known in the community as a healer, would offer support.

It wasn’t until the U.S. Civil War that the caring for the dead became outsourced and professionalized. This was primarily as a result of arterial embalming – which, incidentally, is the only thing professionals are licensed to do in caring for a body that no one else can legally do.

So, it’s legal for people to care for their own dead?

Absolutely, yes. Home funerals happen when next-of-kin exercise common law right to custody and control of the body. This is a fundamental American right that falls into the constitutional category of family rights, much like the right to care for children in the privacy of our own homes without governmental interference.

There are no legal obstacles to keeping or bringing a loved one home for a vigil period wherein the body may be bathed and dressed. One can have friends and family visit, or host a ceremony if desired, all at home. Also, home funerals don’t preclude standard or traditional observances that can be incorporated into the experience.

It’s important to note that there are unbroken traditions of home and community after-death care in religious communities. For example there are burial groups in the Quaker tradition and in the Jewish faith, the Tahara washing is central. Also, in some places in the U.S., professional funeral service is out of reach, so neighbors and fellow church or civic organization members volunteer to help with laying out the body and burial.

Why is interest in home funerals growing? 

There is no way to determine the statistical growth in home funerals – no office of statistics tracks this. But we do have observations that indicate a strong increase in awareness and favorability of home funerals.

“(Home funerals are) a fundamental American right … much like the right to care for children in the privacy of our own homes without governmental interference.” – Lee Webster, president of NHFA

We are seeing a steady increase in interest of people from every socio-economic and age level searching for more environmentally, culturally, financially, and spiritually satisfying after-death experiences. There is a simultaneous and systemic embracing of death and grief as normative processes in life, not as illnesses to overcome. These shifts are forming the underpinnings of the movement to bring after-death practices back into our own hands – and homes.

You mention the historical role of birth midwives in supporting families through death. Do you see parallels between the home-birth movement and the home-funeral movement?

On the surface, there are certainly similarities. For example, those drawn to home birth and home funerals often desire self-reliant, natural, and empowering life-threshold experiences.

However, I feel it is an inaccurate comparison for several reasons, chief among them the obvious difference in physical, moral, and legal care and responsibility for a newborn life and the life of its mother (compared to that of) a dead body. The education required to know where to place the dry ice on a dead body doesn’t compare with the education required to prevent death or catastrophe for a mother and child.

There is a fundamental legal problem with the analogy as well. Birth midwives were absorbed, for the most part willingly, into the medical model and remain a part of that model today. Home funerals and home-funeral guides are not aligned with the medical community. Once the body dies, it is no longer part of the medical wheel, except when organ or body donation occurs. Instead, home funerals are offering an organic alternative to a licensed funeral profession that has no medico-legal authority over families who choose to go it alone, minus a small minority of states that stipulate a funeral home official sign the death certificate.

How were you drawn to this work? 

My personal path to advocating for home funerals is based upon many years of service as a hospice volunteer, hospice spiritual care coordinator, and active conservationist. These interests converged while listening to a National Public Radio interview with Mark Harris focusing upon his book “Grave Matters: A Journey Through the Modern Funeral Industry to a Natural Way of Burial.” From there I learned about home funerals, non-invasive ways to care for bodies, and family-directed care.

For me, home funerals became a social justice issue that revolves around fundamental human rights and environmental imperatives, as well as a pragmatic way to solve financial and logistical problems.

Finally, I am a strong believer in the revelatory power of discomfort. I also believe that facing death on our own terms rather than outsourcing it creates opportunities for healthy grieving. Seeing the light go on when people realize there are positive alternatives to expensive, outgrown, and downright dysfunctional methods of caring for our dead and their bodies appeals to me.

Yes, offering meaningful options to people in times of grief is so important.

Choice matters. I have a deep Yankee quality of self-reliance and a disdain for being told what to do or think. I have come to the conclusion that the blind acceptance of our myths around funerals doesn’t serve us.

How do home funerals challenge what we’ve been told to think about the dead?

The first challenge relates to decades of misinformation and false mythology about the dangers of dead bodies. The fear that a dead body becomes instantaneously contagious is so ingrained in our culture that even our TV and movie programming perpetuates it in both subtle and blatant ways. Few know that the World Health Organization, for example, affirms “the widespread belief that corpses pose a major health risk is inaccurate.”

The other cultural assumption that home funerals challenge is the myth of the helpless mourner. Since the invention of the funeral industry, we have bought the storyline that we are necessarily and organically helpless in the face of grief. But it’s not true. Not everyone is devastated, paralyzed, or beyond coping. It doesn’t mean they don’t care. It means they have a plan for coping.

An emerging narrative that some home-funeral family members express is that they want to immerse themselves in the experience purposefully and experience the discomfort of grief as a catalyst for growth and purposeful action. They want to meet death head on. In fact, this is probably the primary reason for why people choose home funerals – to feel useful and connected.

Both cultural norms view us as victims, with the funeral profession as the only savior. While families are encouraged to partner with professionals for anything they wish, the move toward taking more personal responsibility represents a fundamental shift in our relationship not only to death itself but also to those we choose to partner with in meeting our needs.

Are there commercial interests that may be threatened with the growth of home funerals?  

Ostensibly, professional funeral business would appear to be threatened by home funerals, but I believe the opposite is true.

First, not all deaths are easy and tidy, and not all families are candidates for a complete do-it-yourself funeral. Even highly motivated families may find that the timing and logistics are just too much to manage on their own. So professionals can assist families in planning home funerals. After all, serving a bereaved family is the heart of death work whether you are paid for it or not. It’s not about any rigid requisite for the number of days one can keep a loved one at home, what kind of cooling technique is used, or how many hoops the family can jump through to get paperwork done within a mandatory time period. It’s about meeting the family’s expectations and desires for an intimate and authentic experience at home.

Home funerals present an opportunity to serve the family in a myriad of ways that can’t occur if the deceased is whisked away when the family chooses direct cremation or immediate burial to save money. Home funerals slow the pace, allow family to gather, give them time to think through what they want and act on it – all at little to no cost to the family or loss to the professional.

Add the possibility of including home-funeral guides to established practice and you have more growth potential, not less.

What are home-funeral guides?

Home-funeral guides are educators who consult, coach, demonstrate, and provide information that empowers families to care for their own if they are unaware of details of the practice.

Home-funeral guides don’t aspire to be pseudo-funeral directors. They don’t direct anything or anyone. Instead, they act as resources for people who are unfamiliar with the practical skills and possibilities for caring for their own dead at home. The ideal is for families to be prepared as a matter of course with the necessary information and the confidence to do it themselves, but home funeral is not a household word – yet.

What are the main misconceptions about your organization’s work?

The greatest misconceptions are that we are fringe people looking to shock or challenge people’s sensibilities and go up against the established funeral industry. Neither is the case. We are looking to unveil realistic options about a topic that has been mystified for decades to people regardless of their ability to pay or their religious or spiritual leanings. We hope that the industry listens to what the public is demanding by responding with real change from within.

What we mean by “funeral” is changing. No longer do we jump to the assumption that a funeral means a specific service in a religious building, organized by a hired professional. Through the lens of home funerals, we are beginning to envision the entire funeral period, from death to disposition, as a time filled with possibilities for caring for the physical, emotional, and spiritual needs of both the deceased and the bereaved.

Any final words of advice?

Well, there are no funeral police, so I encourage people to overcome the fear that they are doing something wrong when exercising their legal rights and responsibilities to care for their dead. Ultimately, it is a privilege to offer this last act of loving care.

How can people learn more about home funerals?

The NHFA website is chock-full of information, including directories of home-funeral guides, teachers and trainings, celebrants and more, plus articles, interviews, videos, how-to guides, and other written materials to get people started. We have an active Facebook page, a monthly newsletter and opportunities to connect with others at our biennial conference and monthly call-in programs. No one need go it alone – there’s plenty of support ready and waiting.

Complete Article HERE!

How do you honor a dementia patient’s end-of-life-wishes?

By Bob Tedeschi

EndNotes_alzeihmerQuest

A terminal illness can be devastating for an entire family, with relatives often forced to make decisions about a loved one’s care if the patient is no longer able to do so.

If the patient has dementia, the situation can be even harder. By the time a neurological disorder is diagnosed, many patients can’t think clearly or articulate their wishes for end-of-life care.

So what to do?

Amid the many imperfect options comes a new and promising one.

The Conversation Project, an organization that publishes a guide called “the Conversation Starter Kit,” to help families through end-of-life conversations, recently released a sequel for families of Alzheimer’s and dementia patients. Co-produced by the Institute for Healthcare Improvement, it was co-written by Ellen Goodman, a Pulitzer-winning journalist who founded the Conversation Project and who lost her sister to Alzheimer’s disease roughly four years ago.

“The day she was told by a doctor that she had Alzheimer’s, we got back in the car. She talked about it for a moment and I had this great sense of relief that it was finally on the table,” Goodman said. “Then of course the next day she forgot.”

“We were really too late,” she said.

Goodman knew she wasn’t alone. When promoting the importance of end-of-life conversations, she said, “We were repeatedly asked the question: ‘Yeah, but what if your loved one is cognitively impaired?’”

The new guide, which is available in full here, breaks down the conversation into several steps, with recommendations based on a person’s cognitive abilities.

If the person with dementia is still able to process information effectively, the guide suggests leading them through a brief questionnaire known as the “Where I Stand Scales.” On a scale of 1-to-5, for instance, they are asked how much they’d like to know about their condition and treatment, or how much of a say they would like to have in their medical treatment.

If they are in the midstages of the disease, loved ones are encouraged to gather information in small bites, and look for the right opportunities to talk. Dementia patients often have moments when they remember certain events clearly, like the extended illness of a friend, and such topics can offer the chance to ask questions that might uncover a person’s medical preferences.

If a relative can’t participate in the conversation, the guide suggests a family meeting in which participants fill out the questionnaire as the patient would.

“So often, the doctors will have the family in the room, and they’ll all be absolutely positive that their loved one wanted something, and they’ll all have a different idea of what that is,” Goodman said. “It’s critical to say ‘Let’s bring this person in the room: How did they make decisions? When did they say something about someone else with Alzheimer’s?’ Figure out what that person wanted, not what you want.”

For families who may be prone to conflict or messy tangents, the guide serves as a script and a means of building empathy through brief testimonials. One such testimonial reads: “The shame involved is very parallel to mental illness. The more profound or accomplished the people are, the more shame is involved. The behavior can be so off the charts that you want to both protect and hide.”

There’s an all-important recommendation that too many families overlook — namely, to create a written statement of wishes for caregivers, other family members, and EMTs to follow, and circulating the document or placing it somewhere that’s hard to miss. (On the refrigerator door, for instance.)

Joanna Baker, of Brookline, Mass., moved her parents closer to her home several years ago so she could more effectively manage her mother’s Alzheimer’s disease and spend time with them while they were still relatively healthy. The new Conversation Starter Kit came too late to help her form an end-of-life plan with her mother’s direct input, but she said it helped her in other ways.

“With someone in cognitive decline, you really have to go do the detective work — intuition, translating signals,” she said. “It’s already hard enough. We’re all plodding through this with a tremendous underlying stream of grief.”

Looking for signals in a loved one’s suddenly foreign behavior, she said, requires separating oneself from that grief long enough to view such behaviors not as a reminder of something lost but as a token of something valuable.

Baker has seen her mother exhibit new tendencies the more time she has spent in the dementia unit: deep affection for, and whispered conversations with, a realistic-looking stuffed cat named Douglas, and an affinity for brightly colored caps from washing detergent bottles, for instance.

There was also the time she lashed out at a doctor who gave her a flu shot.

“The doctor said ‘She’s telling you she really doesn’t want an intervention,’” Baker said. “That was like gold to me, because she was helping me interpret my mother’s behavior.”

Her mother is happy, and Baker is confident she is helping her mother live her life according to her mother’s wishes, down to the songs that play in her room.

“We’ve had to cull the music selection, because things she might’ve liked at one time would be less understandable,” she said. “‘Somewhere Over the Rainbow’” always works.”

“How do I know this?” she added. “I pay attention. Her toes tap when she hears that music.”

 Complete Article HERE!

‘I miss you so much’: How Twitter is broadening the conversation on death and mourning

By

Death and mourning were largely considered private matters in the 20th century, with the public remembrances common in previous eras replaced by intimate gatherings behind closed doors in funeral parlors and family homes.

But social media is redefining how people grieve, and Twitter in particular — with its ephemeral mix of rapid-fire broadcast and personal expression — is widening the conversation around death and mourning, two University of Washington sociologists say.twitter

In a paper presented Aug. 20 at the annual meeting of the American Sociological Association in Seattle, UW doctoral students Nina Cesare and Jennifer Branstad analyzed the feeds of deceased Twitter users and found that people use the site to acknowledge death in a blend of public and private behavior that differs from how it is addressed on other social media sites.

While posts about death on Facebook, for example, tend to be more personal and involve people who knew the deceased, Cesare and Branstad say, Twitter users may not know the dead person, tend to tweet both personal and general comments about the deceased, and sometimes tie the death to broader social issues — for example, mental illness or suicide.

“It’s bringing strangers together in this space to share common concerns and open up conversations about death in a way that is really unique, ” Cesare said.

The researchers used mydeathspace.com, a website that links social media pages of dead people to their online obituaries, to find deceased Twitter users. They sorted through almost 21,000 obituaries and identified 39 dead people with Twitter accounts (the vast majority of entries are linked to or MySpace profiles). The most common known causes of death among people in the sample were, in order, suicides, automobile accidents and shootings.

Cesare and Branstad pored over the 39 feeds to see how users tweeted about the deceased, and concluded that Twitter was used “to discuss, debate and even canonize or condemn” them.

Among their findings:

  • Some users maintained bonds with the dead person by sharing memories and life updates (“I miss cheering you on the field”)
  • Some posted intimate messages (“I love and miss you so much”) while others commented on the nature of the death (“So sad reading the tweets of the girl who was killed”)
  • Others expressed thoughts on life and mortality (“Goes to show you can be here one moment and gone the next”)
  • Some users made judgmental comments about the deceased (“Being a responsible gun owner requires some common sense — something that this dude didn’t have!”)

The expansive nature of the comments, the researchers say, reflects how death is addressed more broadly on Twitter than on Facebook, the world’s largest social networking site. Facebook users frequently know each other offline, often post personal photos and can choose who sees their profiles. By contrast, Twitter users can tweet at anybody, profiles are short and most accounts are public. Given the 140-character tweet limit, users are more likely to post pithy thoughts than soul-baring sentiments.

Those characteristics, the researchers say, create a less personal atmosphere that emboldens users to engage when someone has died, even if they didn’t know the person.

“A Facebook memorial post about someone who died is more like sitting in that person’s house and talking with their family, sharing your grief in that inner circle,” Branstad said.

“What we think is happening on Twitter is people who wouldn’t be in that house, who wouldn’t be in that inner circle, getting to comment and talk about that person. That space didn’t really exist before, at least not publicly.”

Traditions around death and dying have existed for centuries, the researchers note. But increased secularization and medical advances in the 20th century made death an uncomfortable topic for public conversation, they write, relegating grief to an intimate circle of family and close friends.

Social media has changed that, they say, bringing death back into the public realm and broadening notions about who may engage when someone dies.

“Ten, twenty years ago, death was much more private and bound within a community,” Branstad said. “Now, with social media, we’re seeing some of those hierarchies break down in terms of who feels comfortable commenting about the deceased.”

Twitter use is still evolving, the researchers point out, making the site fertile ground for studying how social media is used for mourning in the future.

“New norms will have to be established for what is and isn’t appropriate to share within this space,” Cesare said. “But I think the ability of Twitter to open the mourning community outside of the intimate sphere is a big contribution, and creating this space where people can come together and talk about death is something new.”

Complete Article HERE!

Dying on the streets: UVic study examines palliative care for the homeless

‘We were hearing all kinds of stories, and service providers themselves were feeling very distressed’

By Roshini Nair

UVic researcher Kelli Stajduhar says it's not atypical people living on the streets wind up spending their last days in places like cars or parks.
UVic researcher Kelli Stajduhar says it’s not atypical people living on the streets wind up spending their last days in places like cars or parks.

It’s an uncomfortable truth, but some people spend their last days in parks, streets and their cars, alone and in pain.

University of Victoria researcher Kelli Stajduhar has been leading a study looking at palliative care options for the homeless after hearing stories from outreach workers about people dying in the streets.

“We would really like to think as a society that we care for our people, especially at the end of their lives,” she said.

“[But] we were hearing all kinds of stories, and of course, these service providers themselves feeling very, very distressed at the kinds of things they were witnessing.”

Poor relationship to health care providers

Stajduhar — a palliative care nurse — is a strong advocate for better quality end-of-life care, and she said that people on the streets face significant barriers to getting care.

For one, they might not be diagnosed properly or too late.

Many homeless individuals come into the emergency room in pain but leave early or are turned away, she said.

Eventually they are diagnosed, but it is too late.

“They’re finally diagnosed with an illness that’s so far advanced even if a treatment option was offered, there’s really no benefit.”

Furthermore, Stajduhar said homeless individuals are often denied pain medication because health-care providers assume they’re just trying to access drugs.

These negative experiences with the health care system leave homeless people distrustful and unwilling to seek out care, she said.

“We’ve got these situations where people are suffering needlessly, and a big part of that is because of our own biases and stigmas against people.”

Staying within the community

Stajduhar said since many people on the streets are isolated and estranged from their loved ones. Often, the only community they know and love is the downtown community.

“We need to be seeing people and providing service to where they’re at, where they are most comfortable.”

Kelli Stajduhar, a professor of nursing at the University of Victoria, has been a palliative care nurse for three decades.
Kelli Stajduhar, a professor of nursing at the University of Victoria, has been a palliative care nurse for three decades.

But shelters and outreach workers are not equipped to provide palliative care, she said, and there is often no coordination between different groups to provide the best sort of end-of-life care.

Stajduhar said her team is looking at how palliative care providers can be flexible enough to meet people in the community.

One especially promising model is Toronto’s PEACH team — or the Palliative Education and Care for the Homeless team.

The PEACH team has outreach doctor, nurses, and social workers who see people wherever they happen to be — in shelters, on the streets or in a housing complex.

Stajduhar said she can imagine a similar model in Victoria, although there would need to be more funding.

“We have the nuts and bolts in our community to do that.”

Complete Article HERE!