10/14/17

New study looks at end-of-life decision making for people with intellectual disabilities

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by Bert Gambini

 
A new study by researchers at the University at Buffalo provides a groundbreaking look at how advance care planning medical orders inform emergency medical service (EMS) providers’ experiences involving people with intellectual disabilities.

Most states in the U.S. have programs that allow to document their end-of-life decisions. In New York, the Medical Orders for Life-Sustaining Treatment form (MOLST) allows individuals to document what measures , including EMS providers, should take near the end of a patient’s life.

Studies suggest that this approach to person-centered advance care planning can alleviate a dying patient’s pain and suffering, according Deborah Waldrop, a professor in the UB School of Social Work and an expert on end-of-life care. Yet little research on end-of-life decision-making has been done on the growing population of older Americans with intellectual disabilities, which the American Association on Intellectual and Developmental Disabilities defines as a disability characterized by significant limitations in learning, reasoning, problem solving, and a collection of conceptual, social and practical skills.

Waldrop and Brian Clemency an associate professor of emergency medicine in the Jacobs School of Medicine and Biomedical Sciences, authored one of the first scholarly examinations of how pre-hospital providers assess and manage emergency calls for patients who do not wish to be resuscitated or intubated. Jacqueline McGinley, a doctoral candidate in UB’s School of Social Work, joined their research team and served as first author for their most recent work.

Through a series of interviews with five different agencies in upstate New York, the researchers asked EMS providers specifically how forms like the MOLST shape what they do in the case of someone with an intellectual disability.

“The best available research before our study suggested that as of the late 1990s, fewer than 1 percent of people with intellectual disabilities had ever documented or discussed their end-of-life wishes,” says McGinley. “But with this study, we found that about 62 percent of the EMS providers we surveyed had treated someone with an intellectual or developmental disability who had these forms.”

That disparity points to the need to illuminate this understudied area of how people with intellectual disabilities are engaging in end-of-life discussions, according to McGinley.

She says the EMS providers’ charge is to follow protocol by honoring the documents, their directions and organizational procedures. The MOLST, as its name implies, is a medical order that providers are professionally bound to respect. Their procedures are identical for all emergency calls involving someone who is imminently dying regardless of a pre-existing disability, the study’s results suggested.

But questions remained.

“We heard from providers who wrestled with the unique issues that impact this population, including organizational barriers when working across systems of care and decision-making for individuals who may lack capacity” says McGinley.

There are approximately 650,000 adults age 60 and older in the U.S. with intellectual disabilities, according to Census Bureau figures from 2000. Demographers expect that figure to double by 2030, and triple within the foreseeable future.

Person-centered advance care planning specifically involves the individual in discussions about their health history, possible changes to their current health status and what future options might be available in order to best inform that person’s end-of-life decision-making.

The results, published in the Journal of Applied Research in Intellectual Disabilities, suggest that medical orders largely favor efforts to prolong life. This may be due to a reluctance to discuss advanced care planning in this population. Still, this sociocultural context must be strongly considered as future research explores how people with intellectual engage in end-of-life discussions.

Since January 2016, Medicare pays for patients to have conversations with medical providers. In fact, at least once a year, as part of a service plan through the state, people with have face-to-face discussions with their service providers, according to McGinley, who notes the importance of this built-in opportunity to have conversations about serious illness and the end of life.

“What’s most important in all of the work we do is knowing that people can die badly,” says Waldrop. “We know we can make changes that illuminate some of the uncertainties and improve care for people who are dying. Knowing how forms, like the MOLST, are applied in the field is an incredible step in the right direction.”

Complete Article HERE!

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10/13/17

Caitlin Doughty Talks Exploring the World to Find a Better Death in From Here to Eternity

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By Bridey Heing

The question of what happens when we die—in a literal rather than philosophical sense—haunts many of us. But few have made it the focus of their life’s work like Caitlin Doughty. An advocate for shifting the conversation about the “right” way to care for deceased bodies, Doughty owns a Los Angeles funeral home and organizes events where people discuss death with a range of approaches. Her latest book, From Here to Eternity, explores death culture around the world, illuminating the many ways to hold a funerals.

Doughty describes herself as having always been interested in death, but it was after studying Medieval History that she wanted to learn in a more hands-on setting. “When I graduated from college,” she says in an interview with Paste, “I decided that I wanted to see what real dead bodies look like and how they were being taken care of and disposed of.” She found an opportunity when she got a job at a crematory, where she immediately felt a connection to the work. “It’s hard to describe to people, but really from the second that I started working at the crematory, it was like, ‘Oh, this is what I’m supposed to be doing.’”

Doughty immediately recognized that the knowledge gap between the funeral industry and the general public is significant; she says no one quite knows what happens with a body after death. So not only did she want to learn more about the American way of death, but she wanted to talk about it with others. Her first book, Smoke Gets in Your Eyes, chronicled her journey into the funeral industry. And if she needed any indication that people were willing to listen, the fact that the book was a bestseller suggests that there is a desire to learn more about what takes place behind the scenes.

Doughty received a similar response a few years earlier when she founded the Order of the Good Death, an organization dedicated to expanding our understanding of and comfort with death. The organization established a space where everyone from academics to creatives could discuss death. “I was trying to create a community around death, and over the years it has become a resource. It’s hopefully a place where the culture of silence around death can, even just for a moment, be broken.”

Breaking the culture of silence around death is the heart of From Here to Eternity. Each chapter focuses on one or two cultures that handle death in unique ways. In Indonesia, Doughty watched as mummies were taken out of special house-slash-tombs to be feted. In Japan, she visited hotels where families spent time with loved ones’ corpses before cremation. In Colorado, she witnessed an open-air pyre where the community came together to honor the dead. In Bolivia, she made offerings to skulls called natitas, which were dressed up and paraded in the streets during the annual festival in their honor.

Doughty’s mission with her new book is to start a conversation about death in other cultures in a way that says something about U.S. funeral culture, and she wants to communicate the significance of rituals other than our own to combat a lack of cultural relativism.

“I see over and over again people talk about American death tradition, like embalming and burial in a big vault underground, and not liking that at all,” Doughty says. “But at the same time, whenever they heard about something that goes on overseas, they’d go, ‘Ugh, that’s so disrespectful and morbid.”
From Here to Eternity humanizes rituals that might otherwise seem unfathomable. “Even the things that are so out there by our standards feels so normal when you’re there. I wanted to get across that just because it’s not what you do doesn’t mean it’s weird or morbid or should be disparaged.”

Doughty’s text about the way families interact with their deceased loved ones is incredibly moving. But she doesn’t lose sight of her own role as an outsider observing a deeply intimate ritual, and she even talks about the ways in which death tourism has become an issue in countries with well known ways of handling their dead.

“You go into it thinking, ‘I have the best intentions, I’ve spent my life researching these things.’ But the family doesn’t know that,” she says. Doughty relied on local contacts and close friends, who could make sure she didn’t overstep while families were grieving. “The places I chose to go were places I had some in, whether that was a local guide or a person I know who travels all the time to these places.”

While the book has an international focus, the message is clearly one of a domestic nature. The shadow of how the United States handles death is always present, and Doughty dips in and out of her travel narratives to contrast what she sees with what she experiences in her own work. She also questions the very foundations on which the United States has built its funeral industry, including supposed health concerns that have led to profit-driven models of post-death care that many funeral homes require.

Doughty ultimately wants to change the way we talk about and experience death for a simple reason: she regularly hears about how frustrated Americans have been with their own experiences grieving loved ones. “This is my country and my own industry that I work in and own a funeral home in, and it doesn’t seem to be working for a lot of people,” she says. “If I didn’t hear that again and again, I wouldn’t keep doing this work.”

Doughty doesn’t advocate anywhere in the book for one system over another, but she does reveal that the U.S. system as it exists is deeply flawed. Her goal is to explore better ways to handle death, and in this, From Here to Eternity succeeds.

Complete Article HERE!

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10/12/17

The G-Spot: A Good Death

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Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

-Dylan Thomas

By

As organisms that fight for survival, just as other organisms on the plant, a fear of death is built into our psyche. We write about it, we sing about, and Woody Allen obsesses about it. Throughout the ages, civilizations have created various deities to try to explain our origin, our purpose, and our fates when our bodies fail us. As science has evolved, we have learned to worship technology as a new deity that may protect us from aging and our ultimate demise. Despite our growing medical technology, life still has a 100-percent mortality rate. Someday, you are going to die.

Our medical technology sometimes gives us false hope. We pray to the false gods of machines and newer and more expensive pharmaceuticals to stay our execution, often without the thinking about the financial and emotional costs. As a society, we need to be good stewards of resources, as these resources are not infinite. Money that is spent on futile health care could be better used for other things such as alleviating homelessness, treatment for substance use disorder, or perhaps ensuring that every American has a cell phone. What is often overlooked in this discussion is the burden of suffering.

When you are admitted to the hospital, you will often be asked your wishes as far as resuscitation. If you are a 46- year-old otherwise healthy person who is having a heart attack, the answer will almost always be to do everything possible to resuscitate you. If you are 102 years old with dementia and a massive stroke, the answer will probably be to allow natural death. In fact, if I’m the doctor for the latter, I would not ask the family their wishes; I would tell them that it would be medically futile to attempt resuscitation and would only prolong suffering.

In discussing the end of life, the trend over many decades has been toward less paternalism and more autonomy. We encourage living wills and we try to discuss these issues with patients ahead of time. When I was a medical student in an academic university, the discussion was never IF we were going to resuscitate, but what fluids, what size endotracheal tube, and how many medical students could practice procedures before we called the code. Now we are trying more to give the patients and families their opportunity to decide within the setting of their values.

One of the ethical dilemmas in medicine is the balance between autonomy and beneficence. In the United States, we greatly value autonomy in medical decision-making; your ability to make your own decisions about your life, including health care. Built into Western medicine is the idea of informed consent. I offer you medical options and you can choose to take a medication, undergo a procedure, or try your favorite essential oil. I inform you of the options, and make recommendations, but autonomy says that you get to decide if you prefer lavender or vanilla.

Beneficence is a stronger force in other cultures, but it is also ingrained in our medical culture. Beneficence is essentially when your clinician is deciding what is best for you. The opposite is maleficence, the act of committing harm, which every physician swears an oath not to do. If there was no beneficence in medicine, you could walk into your neighborhood pharmacy and get OxyContin, Adderall, Xanax, and a side of cocaine by request. I practice beneficence over autonomy regularly by telling patients that certain controlled substances are not in their best interest, or declining a patient’s request for an unnecessary CT scan because the risks of radiation outweigh potential benefits. It is also beneficence when I place a patient on a psychiatric hold because I feel that they are in imminent danger of harming themselves.

When discussing end of life care with patients, health-care professionals must balance these two ideas. Many providers are uncomfortable with these discussions, and often begin and end the discussion with, “Do you want everything done?”

Well, who doesn’t want everything done? The logical converse is putting someone in a corner to be ignored as they gasp for breath. In reality, there is plenty that can be done at the end of life. Medical school focuses on the diagnosis and treatment of disease, but often falls short in discussions of palliation of symptoms. I do not like the term “do not resuscitate (DNR)” as it implies that we are withholding care. In fact, what we are doing is changing to focus of care to allow natural death and palliation of pain and anxiety. We have many treatments available for symptoms at the end of life and I minimize the suffering of my dying patients.

What happens when the family and the provider are not on the same page? Just like most areas of human interaction, the key is communication. I was the chair of the bioethics committee at a community hospital for two years and the vast majority of ethics consultations were regarding end of life care. In almost all of these cases, the issue was resolved by compassionate, open communication. Physicians are often frustrated by patients and families who have unrealistic expectations. Unfortunately, we also put the burden on families in the name of autonomy. I have seen many families struggle with the decision of whether or not to attempt resuscitation for a loved one, and it is evident that they fear the guilt of making the wrong decision. I often then put that burden on myself and give them an opportunity to object by saying things such as, “resuscitation is unlikely to provide a meaningful recovery and likely to cause suffering so I recommend if she stops breathing or her heart stops that we allow a natural death.”

This often assuages the family’s guilt as I advise them what I think is best.

Since death is inevitable, the decision is really the balance between extending quality life and suffering. If I extend your life, but during that time you are unable to communicate and have to endure painful procedures, I have not really helped you. However, if those painful procedures will then return you to a life that you consider meaningful, I have done some good. Although I cannot see the future, I can predict the likelihood of a good outcome based on your prior health, function, and the nature of your current illness. All too often I see someone with severe dementia who is bed-bound with a feeding tube undergoing painful procedures that will inevitably only prolong suffering. Ethically, I think that is doing harm.

According to medical ethics, clinicians should not offer futile care. I see it happen in the name of autonomy or misguided fears of litigation. I do not offer feeding tubes to patients with dementia who stop eating because there is ample evidence that it does not prolong life and it does increase suffering. Those of us in healthcare need to remember that we are the experts and we should first do no harm. Those of you who are involved in these decisions need to ask your medical providers these difficult questions. Ask your physician, “If this were your mother, what would you do?”

Most of the deaths I see are predictable. As we age and deal with illness, we should not fear death, but plan for it. Death is a natural part of life, and will occur whether we are ready to accept it or not. Several studies have demonstrated that physicians are more likely to die at home and less likely to have aggressive surgical procedures at the end of life. Our patients should have the same consideration and be allowed a dignified death.

Speak with your family about your wishes and their wishes. If you have a family member with a serious chronic illness, don’t wait until you’re in the emergency department and frightened and someone is asking you if they should “do everything”.

We will all die some day and if we are prepared, we may be able to die well.

Complete Article HERE!

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10/10/17

Being a Funeral Director Made Me Realize the Death Industry Is Too Exclusive

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By Caleb Wilde

It was nearly six in the morning when I heard the sounds of hovering helicopters a couple hundred yards away from my house. At the time, my wife, Nicki, and I lived in a small half of a double on the farthest fringe of the Borough of Parkesburg. While the occasional helicopter could be heard in the Parkesburg proper, our little house on Upper Valley Road was sandwiched by the sounds of the trains that ran on the tracks a hundred feet from our small backyard and the speeding cars on Upper Valley a mere 20 feet from our front door.

I peeked my head outside the window but couldn’t see the machines that were producing the sounds I could so clearly hear. The idea that something must be very wrong entered my mind. I turned on the television, and sure enough, the Philadelphia station I turned on had a breaking news update. The rhythmic and practiced voice of the news anchor read the prompter with all the outward concern he could exercise: “Two young boys and their aunt and uncle died in a fiery car crash outside of Parkesburg, Chester County, late last night.”

Parkesburg is an hour outside of Philadelphia. We’re the small town of 3,500 that claims Philadelphia as our closest “big city” while Philadelphia has no idea we even exist, except when something horrific happens. This morning, Parkesburg had made the news. Today, Philadelphia reporters descended upon Parkesburg to fill their 6 a.m. quota.

There have been a few times when Facebook has informed me of a death before the family has called us at the Wilde Funeral Home, where I work with my father and grandfather. But this was the first time I had turned on the television and watched aerial footage of a disaster that was soon to be passed onto me. When I got to the funeral home later that morning, I learned we were the ones entrusted to handle the services for all four of the deceased. The two adults (the aunt and uncle of the boys, who were babysitting them at that time) were to be cremated, while the boys, 8 and 10 years of age, were to be embalmed and viewed, depending on the condition of their bodies.

The following day — after the coroner performed her duty — I drove our van to remove the two adults first (our removal van comfortably fits two in the supine position). After I dropped them off at the funeral home, I jumped back in the van to pick up the bodies of the two boys. When I go on these tragic calls, I’ll usually either sit in silence or find some upbeat music on the radio to distract me from the void. It can be anything — Pop music. Oldies. Katy Perry.

After driving the bodies home, it was my duty to unzip the body bags for the two boys to see if their faces could be made presentable for a public viewing. The smell of burnt human flesh is somewhat distinct. It sticks to your hair, to your clothing, and when I opened those bags, what I saw will forever stick in my mind. You’ve seen the Hollywood versions of burn victims, and it’s all horrible, but the visuals we see on the TV screen don’t do justice to these tragic deaths. All deaths have a type of presence, but tragic deaths have a presence that fills a room. I don’t know if I believe in ghosts, but I do believe that the dead have some kind of aura.

I had to look at the boys’ faces to determine whether or not we could have a viewing, hoping to find a visage that could — through hours of work — be presentable to the family. Unfortunately, I didn’t find what I was looking for and had to inform their stricken parents that a public viewing was outside of our ability, which — in a way — produces a small sense of guilt in me. Whether the pressure is from an inward or an outward expectation, there’s always this nagging feeling that we should be able to restore any form of disfigurement, that embalmers should possess some Harry Potter magic in our prep room and magically wave our trocar (a large needle-like instrument we use during embalming), and then “poof” we have beautiful corpses. But there is no magic trocar. And there are no mystical chants.

The family was broken in more ways than one. They were fighting about who would officiate the service. One part of the family wanted a nonreligious service while the other side wanted a Christian service. Threats were made. Words were spoken that should never be spoken, and we had to involve the police. The day before the service a police officer came to the funeral home to go over the plan of action if the funeral became volatile.

As we were going over the funeral procession route with the officer, I collapsed and momentarily lost consciousness; the policeman called the ambulance, and I was taken to the hospital’s emergency room with what would later be generically diagnosed as physical exhaustion.

On my way to the hospital, not knowing what was happening to me, I had a moment of unshackled clarity: Was this what I wanted to do? Is this who I wanted to be?

* * *

Months before I found myself in the back of that ambulance, watching the strobe lights bounce off nearby houses and road signs, I found myself struggling with depression and compassion fatigue. My doctor had prescribed me antidepressants to combat the day-to-day experience of depression, but there wasn’t anything for rejuvenating my burnout.

The first couple years of working at the funeral home, I felt like a duck swimming in deep water. From the outside, I was calm, confident, and natural, but underneath, I was kicking furiously against the darkness. Although I knew what I was getting into when I joined the funeral business, it wasn’t my closeness to death that was destroying me; it was how I viewed it. If someone had suggested to me then that there’s beauty in death, that there’s goodness in death, that death could inspire a healthy spirituality, I would have thought them both morose and naïve.

Even though I had grown up around death — funeral director was the family profession on both my mother’s and father’s side — I was just as susceptible as anyone to what I call the “death negative narrative” that so many of us have come to believe. On a practical level, I had seen too many tragic, traumatic, and horrific deaths portrayed on TV, the internet, and at work. And beyond the normalization of extremes via the media, the death-negative narrative is wired into our very biology. Humans are a most advanced death-defying machine.

We have highly evolved systems to fight against the onslaught of death, foremost of which is a brain that sets us above all our competition. And that brain has kept us alive and given us the chance to evolve through its fight-or-flight mechanisms. Death is our oldest evolutionary enemy, and we are so advanced at fighting it that for about 50 to 90 years, most of us win. Still, fearing death is part of our biology; it numbs our minds whenever we try to think about it, and even the most rational among us struggles to find clarity when confronted with the death-negative narrative.

Another thing that made me susceptible to the death-negative narrative is that even though I had seen thousands of dead bodies, I had never seen someone die. Many have had the privilege of holding the hand of a loved one as he or she passed, but many others of us haven’t, in part because the dying process has been isolated in nursing homes and hospitals. In times past and in many other cultures outside the United States, death and dying happen in home and community, with family and friends acting as death doulas, leading the dying through their final life stage. Today, though, doctors and nurses have replaced family and friends, an unintended consequence of the advancement of medical science. We fear death because we don’t know it, we don’t see it, and we don’t touch it.

* * *

Dressing a loved one, caring for him or her after the person has passed away is a great example of what a good death, a positive narrative, looks like. Part of what contributes and perpetuates the death-negative culture we find ourselves in is that death care has become an industry that has told people, This is beyond your capabilities to handle. Death is scary, messy, gross, sad. Let us take care of it for you.

When the funeral industry professionalized death care and did away with the “community undertaker,” it implicitly and legally made death amateurs of everyone else. With doctors having authority over dying, and funeral directors gaining authority over death, it created a culture of death virgins, people who have little experience and know-how when it comes to the end stage of life. The funeral industry is partially to blame for creating the “death professional”; after all, the industry has worked hard to secure our position by creating laws and educational requirements to make us at least seem like the exclusive practitioners of death care.

But it wasn’t just capitalist undertakers who created this professional and amateur divide. Part of the reason the funeral industry buried the community undertaker was because death doesn’t jibe with the modern American vision and those Americans who embrace it. Death questions our delusion of self-mastery. So let’s just ignore it. Or better yet, let’s find someone else to handle it.

Americans found a “win-win” situation by giving their dying and dead over to a willing nursing home industry, hospital care that stays death like an overdue pregnancy, and a funeral industry that happily disposes of our dead. We’ve created multiple groups of professionals to handle our dead, and we pay loads of money for the service.

Funeral directors are one of those groups. We perform the magical disappearing act when we take your body, embalm it, dress it, casket it, and give you back a sleeping corpse unscathed by the deterioration of decomposition. Cremation is no different. The body is whisked away and comes back in a small little box, with little to no family participation. This magic is modern and means people never get to touch death or care for their dead.

The axiom is simple, although forgotten, or ignored: the more we practice death care, the less we fear death itself; the closer we become to our dead, the less we fear death. In much of the history of our world, people have been much closer to death than they are now.

But sometimes, families transcend the narrative for just a little, and instead of being an audience to the funeral process, they take the active role, pulling away the magic and making death visible once again. They take death into their hands and decide they are the professionals. In fact, many Amish still dress and casket their loved ones. The funeral director will embalm the deceased and then the Amish family will take the body into their care. Some families will wash the deceased, then they’ll gently clothe the deceased and place the body into the plain wooden casket. Many Mormons, Muslims, and Jews all do the same. This is one of the luxuries of a close-knit community. And when the family of Tommy Ricci, a friend of my grandfather, called to let us know Tommy had died, it was a luxury I wanted to offer them, too.

My grandfather agreed. “Why don’t you ask them,” he said.

We rolled the stretcher through the front door, walked it over to the bed where Tommy lay. My grandfather invited anyone who wanted to to help lend a hand, and in a couple of seconds a good dozen people surrounded Tommy’s bed; we grabbed the bed’s mattress sheet, cocooned his body with it, and passed his body over to the stretcher. After we had strapped him on the stretcher, my grandfather confirmed the time we’d meet with them tomorrow for the funeral arrangements, instructed them to bring the clothing they wanted Tommy to wear for the viewing, and then left the conversation open for my question.

I cleared my throat, not sure how they’d respond to what I was about to ask them. I said, “Would you guys be interested in dressing Tommy for his funeral?”

Tears stared running down the face of Tommy’s wife. His sisters started, too.

Amid the tears, they responded, “Could we?” And with my yes, Tommy’s wife embraced me and started sobbing on my shoulder. By the time she was done hugging me, I had joked that she’d have to pay to have her snot dry-cleaned off my suit.

The next day, Christmas Eve, the Riccis were at our front door, clothing in hand. They made the funeral arrangements with Pop-Pop, and when they were finished, I guided them to the dressing room while explaining how the process of dressing a dead body worked. “Grief brain” is like being drunk. It’s hard to be “in the moment” as nearly 80 to 90 percent of your brain energy is being redirected to grasping the new normal of life after loss. I wasn’t sure if Tommy’s family’s grief brain would keep them from being able to do the task at hand. Maybe they’d burst into tears and storm out of the dressing room. Maybe they wouldn’t be able to stomach seeing the incision near his collarbone from the embalming.

They walked into the dressing room with stoic faces, bent on not being encumbered by the obvious emotional weight of the whole thing. We laid out the clothing and cut Tommy’s undershirt, dress shirt, and sport coat down the back. We used the body lifter to put his underwear, pants, and socks on. Then we tucked in the shirt, laced the belt through his pants. One of the sisters combed his hair and styled it. They all talked to him, just like I do when I’m with bodies.

Are your pants too tight? I’ll loosen that belt.

Let me get your hair just how you liked it. You could be a pompous thing with this hair of yours.

I know you hated dressing up, but you have a big day coming, gonna see a lot of people.

On the day of the service, all of Tommy’s family and over two hundred other people showed up to the church. It was a few days after Christmas, and the church was still dressed in its Advent outfitting. Wreaths and candles filled the air with holiday scents, and the cheer that seeps into this special time of year was still detectable.

Because life is this beautiful, complex, and messy web of giving ourselves away to others, and allowing others to give themselves to us, shouldn’t our dying process be supported by those who created our web of life? Shouldn’t our death be supported, not by a single funeral home or funeral director, but by these life connections that have been created by us and those that have created us? Funeral directors hold incredible value — and we’ve always existed in one form or another — because death is hard, but I believe bereaved families are robbing themselves and our loved ones by capitulating dying and death over to the “experts.”

Tommy’s family taught me that anyone can — and should — be a part of the death-care process. And I’m sorry our sometimes-capitalist intentions have made people “amateurs.” I’m sorry that we’ve helped exacerbate the fear of death by monopolizing death care, but I think together, in the messiness of life and death, we can find a way to grow closer to our dying and our dead.

Complete Article HERE!

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10/9/17

De-Medicalizing Death

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By Jessica Nutik Zitter

There’s been an unexpected, and excellent, consequence to California’s new medical aid-in-dying law. For many terminally ill patients, immersion in the process of securing lethal drugs ultimately renders them unnecessary. How did this come about?

Passed by the California legislature in late 2015, the End of Life Option Act allows physicians to prescribe a lethal concoction of drugs to some patients with terminal illnesses who meet certain criteria. The law, commonly described as providing “medical aid in dying,” took effect on June 9, 2016. It stipulates only that the requesting patient be considered terminal (less than six months away from death), possess full decision-making capacity, and be physically able to self-administer the life-limiting drugs. Although the physician is obligated by law to inform the patient of alternative care options, such as psychological counseling or symptom management with palliative care services, there is no direct requirement that the physician arrange or provide them. In its barest form, the option can serve as a dispensary for life-ending medications.

California’s medical community was taken by surprise by the rapid passing of the law in late 2015. It came on the heels of the dramatic case of Brittany Maynard, a young woman with terminal brain cancer who elected to move from California to Oregon to access medical aid in dying under that state’s Death with Dignity Act. Hospital systems and physicians in California suddenly found themselves with an urgent need to rapidly formulate policies around this new right of patients. Some, such as the Catholic Health Systems, opted out on religious grounds. Others scrambled to put basic policies in place for patients who met inclusion criteria. And some institutions decided to put significant time and resources into supporting this new legal reality in the most comprehensive way possible.

One standout example is the University of California, Los Angeles (UCLA) Health Centers. After literally thousands of hours of discussion, the working group determined that the intake process for patients requesting medical aid in dying should be conducted by trained psychotherapists (psychologists and clinical social workers) instead of physicians. Dr. Neil Wenger, director of the UCLA Health Ethics Center, led the effort to create processes and infrastructure to respond to this law. “We wanted to be able to offer a service that doctors tend to gloss over,” he said, when asked why they chose to lead with talk therapy. The intake consisted of an extensive set of questionnaires designed to assess all possible sources of distress. Any patient with physical or psychiatric needs was referred on to the appropriate services. But as the UCLA committee expected, most of what patients needed was to discuss their feelings about their approaching death and process their grief and sense of loss. This mirrors data from the entire state of California as well as Oregon, which suggest that the distress prompting patients to request these lethal medications primarily stems from their fear over losing control at the end of life. It is not, as many may think, due primarily to physical suffering.

The intake questions explored goals of care, quality of life, and patients’ emotions around their impending deaths: Were they ready? What scared them? What made them anxious? Did they feel their lives were complete? What did they feel makes life meaningful? What decrements in quality of life are too great? What haven’t they said and to whom? Anne Coscarelli, psychologist and founding director of the Simms/Mann–UCLA Center for Integrative Oncology, described the conversations that came from this intake process as revelatory and comforting for the patients. Several patients ultimately completed legacy projects, such as video or written messages and stories, for their children and grandchildren. This invitation to talk, which opens up a discussion that most of us are taught to avoid, turned out to be a game-changer.

Only a quarter of the patients ultimately went on to ingest the lethal drugs they came requesting. The actual data is more complex: Some who requested this service did not meet the basic requirements to receive it. Others died before they had a chance to ingest the medications. But the staff from UCLA reported case after case in which patients’ goals shifted from wanting to hasten their deaths to deciding to live out the remainder of their lives.

Ours is a culture that does not talk about death, even when it should be impossible to ignore. Despite the fact that 89 percent of people think that it is a doctor’s responsibility to discuss end-of-life care with their patients, in reality, only 17 percent of patients report having had such a conversation, according to a 2015 survey from the Henry J. Kaiser Family Foundation. As a doctor who practices both critical care and palliative care medicine, I have presided over thousands of deaths. Most of my patients have suffered with chronic illnesses for years: metastatic cancers, failing lungs, and progressive debilitation from dementia. And yet almost none of them have discussed their own death with their doctors, or even their families. Most have no idea that they are actually dying. In this culture that operates on a fantasy of immortality, with unrealistic promises made by television shows and advertisements, doctors see themselves as failures if they are unable to cure their patients. We physicians are trained to lead patients into battle after battle, into the next procedure or intervention, banking always on that magic pill or miracle cure.

This broad cultural unwillingness to acknowledge death results in a phenomenon I call the “End-of-Life Conveyor Belt,” where high-tech treatments are automatically attached to bodies as they progress through the stages of dying. As the baby boomers age and our treatment options blossom, more are being exposed to the suffering brought about by these protocols. The tremendous anxiety we see over loss of control is understandable. It is no wonder that people in many states have asked for, and finally won, the right to take back that control with a pill.

The effort by UCLA Health seems to be working. Placing highly trained psychologists and clinical social workers in the critical role of “first responder” to a patient’s request to hasten death has rendered many of these requests obsolete. In choosing this approach, UCLA is effectively “de-medicalizing” the experience of dying by prioritizing the need for deep reflection. In this way, the program provides patients with an option that doctors are not primarily trained for.

Patients requesting support to hasten their deaths are only a small subset of the population of the dying. They are in some ways canaries in a coal mine, their request for medical aid in dying is alerting us to the unmet needs of the wider population of dying patients. And what I am seeing is that our new legal responsibility to steward these patients responsibly through this rocky terrain will build practices and skills that will help all of those at the end of life.

Where goes California, thus goes the nation. California was the fourth state to legalize medical aid in dying and has since been followed by two more. And UCLA’s approach, with trained psychologists guiding patients through this tricky terrain, shows us the way. Let’s take advantage of this wave to take better care of all our seriously ill patients. And let’s make sure we give patients what they really need and hope that lethal drugs are always the last tool in the toolbox.

Complete Article HERE!

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10/8/17

Many kids dying of cancer get intense care at end of life

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By Lisa Rapaport

Nearly two-thirds of children and teens with terminal cancer receive intense care at the end of life, often in hospitals and intensive care units, a U.S. study suggests.

Certain patients, including kids under age 5 and teens aged 15 to 21 as well as ethnic minorities and patients with blood malignancies were more likely to receive aggressive care than other children, the study also found.

“The rates of medically intense end-of-life care we found in our study and the disparities we found raise the question: Are we providing a palliative approach to end-of-life care for these patients?” said lead study author Dr. Emily Johnston of Stanford University School of Medicine in California.

“I hope this study makes pediatric oncologists and others taking care of these patients reflect on the end-of-life discussions they are having, particularly with these high-intensity groups,” Johnston said by email. “I also hope it lets families experiencing the loss of a child due to cancer know that there are different ways for that death to happen, so they can think about and advocate for what is best for their child and their family.”

Many adult patients with cancer who know they are dying choose less intense care, and aggressive treatment is associated with worse outcomes for families and caregivers, Johnston and colleagues write in Pediatrics. But less is known about treatment choices for children, Johnston told Reuters Health.

For the current study, researchers examined data on 3,732 patients age 21 years or younger who died of cancer in California from 2000 to 2011.

Researchers examined the intensity of medical interventions at the end of life by looking at how often patients had cardiopulmonary resuscitation (CPR), intubation, intensive care unit (ICU) admissions or dialysis within 30 days of death. Researchers also looked at how often patients had intravenous chemotherapy within 14 days of death and how many patients died inside hospitals.

Overall, 63 percent of patients died inside hospitals and 20 percent were admitted to ICUs.

Children were more likely to receive aggressive interventions at the end of life when they lived closer to a hospital, or when they received care at a hospital that wasn’t a specialized cancer center, the study found.

One limitation of the study is that the results also may not reflect what would happen outside California, or represent more recent trends in end-of-life care, the authors point out. Researchers also lacked data on how patient and family preferences or other factors might have influenced care decisions.

“We do not know a lot about how the end-of-life experience of children impacts on family bereavement outcomes,” said Dr. Joanne Wolfe, co-author of an accompanying editorial and director of pediatric palliative care at Boston Children’s Hospital.

“Some earlier studies have shown that the child’s experience of pain impacts bereaved parents’ long-term outcomes including anxiety and depression,” Wolfe said by email.

Communication is also key, said Dr. Kim Beernaert of Ghent University and Vrije Universiteit Brussel in Brussels, Belgium.

“We know that communication and information about decision making, treatment options, prognosis etc. is very important for how bereaved parents cope afterwards,” Beernaert, who wasn’t involved in the study, said by email.

With the right information and support for parents and families, many children who die in a hospital might be able to die at home instead, said Dr. Amos Bailey of the UCHealth Palliative Care Clinic at the Anschutz Cancer Pavilion in Aurora, Colorado.

“However, it is physically and emotionally challenging to care for a loved one in the home through death, and parents and children may feel more comfortable and safe in a hospital where it is likely they have been admitted before and come to trust and depend on staff,” Bailey, who wasn’t involved in the study, said by email.

“It will be important to understand if more parents or children would want to die at home or out of a hospital if they were supported,” Bailey added.

Complete Article HERE!

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10/7/17

Washington State University considers composting human remains

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A nonprofit group, the Urban Death Project, is seeking what it calls an ecological alternative to disposing of dead bodies by transforming them into soil to be used to nourish trees, flowers and memorial gardens.

By Taylor Nadauld

Washington State University is acquiring the necessary approvals to test equipment to compost human remains at one of its facilities in what is bluntly being called the Urban Death Project.

Founded by Seattle-based designer Katrina Spade, the Urban Death Project is a registered 501(c)3 nonprofit organization that seeks to create an ecological alternative for the care of the deceased by returning their bodies to the earth through a process she calls “recomposition.”

Lynne Carpenter-Boggs, associate professor for WSU’s Department of Crop and Soil Sciences, said the project team is in an exciting yet boring phase of seeking necessary approvals to conduct such research on WSU’s campus.

Carpenter-Boggs and Rick Finch, manager of the WSU Waste Management program, both sit on the project’s technical advisory team, which consists of several other professors, morticians, anthropologists and authors from across the country.

The WSU Compost Facility has received modifications to its air quality permit from the Washington State Department of Ecology that would allow it to conduct a pilot study of composting human remains in part of the university’s existing 66-foot-long, in-vessel composter.

The approval order for the permit modifications will be issued in a week or two, Robert Koster of the department’s air quality program wrote in an email.

The facility, at the end of Dairy Road in Pullman, already converts animal carcasses and entrails, as well as animal bedding and manure, into compost.

Air emissions from the composting of human remains are not expected to change from those of composting other animal carcasses, according to a notice from the state Department of Ecology.

The project has also been approved by state and county offices for the state Department of Health’s Office of Environmental Health and Safety, said Marta Coursey, director of communications for WSU’s College of Agricultural, Human, and Natural Resource Sciences.

Still, several WSU scientific committees, the dean of CAHNRS and the WSU vice president of research must review legal and ethical issues, biosafety protocols and other aspects of the research before it can move forward. A verdict is likely to come in by the first or second week of October, Coursey said.

Were the project to move forward, the compost facility’s in-vessel composter would be divided into three 22-foot sections to isolate the study from other composting activity.

Koster said the department received no comments for or against the project during a monthlong public comment period that closed Sept. 15. The university published a legal ad about the comment period, but issued no news releases about it.

Complete Article HERE!

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