Today we are talking about death, looking at philosophical approaches from Socrates, Epicurus, and Zhuangzi. We will consider whether it’s logical to fear your own death, or the deaths of your loved ones.
Die like a dog
Pet dogs often have a peaceful death that forestalls protracted suffering and pain. Why can’t we do the same for humans?
[I] killed my dog last year. Mika was a shelter mutt, so she was around 10 or 12 years old; I can’t be sure. Twelve dog years would have put her at around 80 human years, which is a pretty good run. But what’s strange about having a dog is how quickly they age relative to us – they start out younger than we are, catch up for a time, and then pass us by, declining into their twilight years, all in the space of a decade or so. As witnesses to that accelerated timeline, having a pet means that we often end up experiencing their eventual demise and learning something about death in the process.
Mika was a great dog. Obviously abused before ending up at the shelter, she had scars on her head when I rescued her and, whenever I took a broom or rake in my hand, she would cower in fear. She was easily overwhelmed when other dogs came up to sniff her, and would often growl defensively. But with time she grew to be less apprehensive and almost pathologically affectionate, if there is such a thing with animals, demanding to be petted by anyone who happened to be near. She was a great companion watching TV on the couch during my single years, and she helped me win the attention of the woman, a veterinarian, who would eventually become my wife. In fact, my wife has often joked – and maybe it isn’t a joke at all – that she would never have gone out with me in the first place if I hadn’t had a dog.
For whatever reason, the way I’d always pictured the proper death of one’s dog was like a scene taken from the 1957 Disney film Old Yeller (1956): after years of steadfast companionship, when man’s best friend no longer derives joy from chasing rabbits and can barely lift his head, his owner has to muster the resolve to get out the rifle to put him out of his misery. Although an oddly bucolic fantasy for someone living in Los Angeles, at least part of it was no doubt influenced by how I’d learned to think about death as a physician.
In human medicine, we’re used to implementing any and every life-saving intervention right up to the very end. As a medical intern 20 years ago, I remember thinking about the futility of that approach with patients in pain and suffering from multisystem organ failure, sustained only by machines and a regimen of some 30 or 40 medications, and unlikely to ever make it out of the hospital. What was the point? Whatever happened to quality of life? But those reservations be damned, we never gave up, and among the interns who transferred care to each other from shift to shift, the dictum of patients ‘not dying on my watch’ was something to which we all held fast.
As long as there were no ‘Do Not Resuscitate’ orders in the chart asking us to withhold ‘heroic efforts’, we rarely considered doing anything less to prolong life, and financial cost was never part of the equation either. As far as hastening death, that was never even mentioned. After all, the original Hippocratic oath states: ‘I will neither give a deadly drug to anybody if asked for it, nor will I make a suggestion to this effect.’
[W]hen Mika, who’d had hip dysplasia from the start, developed increasing difficulties walking and was in obvious pain much of the time, my wife and I put her on medications and even tried acupuncture, which helped for a while. But one day, at the start of our morning walk, she ambled to the end of the driveway, sat down, and refused to go on despite me pulling the leash. It was the same the next day and the next, so I stopped trying. It was at that point that my wife first brought up the possibility of putting her down, but that seemed ridiculous to me because between Old Yeller and my experiences as a human doctor, I envisioned Mika struggling through the pain, fighting for her last breath to the very end. In other words, it didn’t seem right to think about letting her go because she hadn’t yet suffered enough.
As a veterinarian, my wife viewed things altogether differently. To her, putting our dog to sleep didn’t represent throwing in the towel as it seemed to me, but a compassionate way to preempt unnecessary but inevitable pain and suffering down the line. As she saw it, we owe this option to our pets as stewards of their care, especially given that animals can’t understand pain or decide for themselves just how much suffering they are willing to tolerate.
Indeed, the American Veterinary Medical Association Guidelines for the Euthanasia of Animals (2013) acknowledges that ‘there is no consensus on when it is appropriate to let [a] life go’, but notes that: ‘Euthanasia may be considered to be the right course to spare [an] animal from what is to come … if medical intervention would only prolong a terminal condition, or if current health conditions cannot be successfully mitigated.’
When we were dating in the years before we got married, my wife would often come home from a long day at work and say: ‘I killed my patient today.’ This, I came to understand, was a kind of self-reproachful statement of defeat as well as a starkly factual statement that reflected how she’d actually administered the medications that ended a dog or cat’s life that day, typically with tearful owners and their bawling children huddled around.
This strange admixture of guilt from failing to save a life, along with the resolve to be the agent that takes it, comes with the territory in a veterinary clinic where euthanasia is a daily occurrence. Although euthanasia literally means ‘good death’, it was totally foreign to me in my training as a physician. Human doctors might feel guilty losing a patient in the end, but that guilt is almost always tempered by the reassurance that while we might have lost the battle to cancer, nature, God or whatever, we did everything we could in the process. Being a physician means that doctors must sometimes admit defeat, but in doing so, we don’t go on to be the hand of death.
[A]s time went on, medications and acupuncture had less of an impact on Mika, and her hind legs would often give out so that she would walk only a limited distance before collapsing. She seemed to be slipping cognitively too, and one day even fell into the swimming pool while we were away at work, requiring rescue from a neighbour. In what seemed like a short amount of time, her muzzle turned fully grey, and she would often sigh heavily with a distant look in her eye. Finally, she began to lose control of her bowels, with increasingly frequent accidents around the house.
And so, discussions about euthanasia became more about ‘when’ than ‘whether’.
The difference in attitudes towards euthanasia for animals and human beings is understandable. After all, people have been killing animals without remorse for food, to avoid becoming food ourselves, and for sport long before we began domesticating animals or keeping them for companionship. Whereas traditional Judeo-Christian and Islamic teachings include strong proscriptions against murder and suicide for humans, religious doctrine questions the animal soul. And while euthanasia is used as an ethical means to preempt suffering in veterinary medicine, it’s not unusual for some owners to simply abandon their pets by the side of the road, put puppies in garbage bags, or refuse to pay for life-saving medical procedures based on both economics and expediency. No wonder the expression ‘die like a dog’ has historically referred to the most miserable of ends.
In 2009, US legislation that would have allowed physicians to be compensated by Medicare for providing voluntary counselling to patients about options for end-of-life care was defeated due to political uproar over ‘death panels’. And yet, as I discuss in the World Journal of Psychiatry in 2015, human euthanasia is being increasingly considered and sanctioned both in the US and abroad. As life-extending medical advances over the past 50 years have fuelled growing concerns about prolongation of suffering and loss of autonomy, the euthanasia movement of the 1930s has gained momentum, evolving into the modern ‘right to die’ and ‘death with dignity’ movements that challenge us to consider what constitutes a ‘good death’. Today, some form of voluntary active euthanasia – death by administration of a lethal dose of medication to avoid pain and suffering – is legal in several states in the US, as well as in Japan and parts of Europe including Belgium, Luxembourg, Switzerland and the Netherlands.
Still, if the historical divide between our attitudes towards euthanasia for humans and for animals is narrowing, the devil in the details of cultural sanctioning involves who can actually administer, or is willing to administer, the medications that end life. With existing legislation to date, the sanctioned individual – whether a physician, family member, some neutral third party, or the person seeking to end their own life themselves – varies by jurisdiction. Although ‘death with dignity’ is increasingly supported in many parts of the world, often neither doctors nor patients seeking death want to ‘push the plunger’ and take responsibility for being the hand of death. In this sense, euthanasia remains a hot-potato issue in human medicine.
Consequently, we now find ourselves debating a range of possible end-of-life care options, including passive euthanasia (withholding life-sustaining interventions including food or water), physician-assisted suicide (providing the means for a patient to end their own life), and active voluntary euthanasia (administering a lethal medication to a patient). Palliative sedation is an increasingly popular option within medicine, which involves administering medications that are intended to relieve suffering through sedation and pain control to the point of possible unconsciousness. Although death is a potential side effect, palliative sedation avoids the moral objections of suicide and euthanasia through the ethics of the so-called ‘double effect’, which argues that death is an acceptable outcome if unintended and in the primary service of relieving suffering among the terminally ill. Pushing the envelope of what it means to die a ‘good death’ for humans even further, my colleagues at the University of California, Los Angeles have been investigating the use of psychedelic drugs such as psilocybin to relieve anxiety and depressive symptoms and to find meaning at life’s end.
[A]fter hemming and hawing for weeks, my wife and I finally decided to pick a date to have Mika put down. We asked a veterinarian friend to perform the euthanasia in our home. On the agreed day, it was my wife who put off making the call until I couldn’t take it any longer, and had to prod her to do so. The vet came to our house, started an intravenous line, and filled a syringe with Euthasol as we sat on the floor by Mika’s bedside, petting her with long strokes and saying our tearful goodbyes.
When we were ready, I asked if I could push the plunger, and the vet allowed me to place my hand with hers as we did it together. I was worried that Mika might show signs of discomfort, but seconds after the medication went in, she simply took a single, long, deep breath, and then let it out slowly for the last time.
‘Good dog,’ I told her. ‘Good dog.’
It was a good death. We should be so lucky.
Complete Article ↪HERE↩!
I Embalm Dead Bodies For A Living — Here’s What It’s Like
By Annie Georgia Greenberg
[T]he building that houses Milward Funeral Directors in Lexington, Kentucky has been around for 193 years. It’s a three-story maze that starts with a light-soaked, stone-floored entrance hallway. The hallway is home to an awfully regal cage of tiny, yellow-breasted finches, and they greet you as you walk in through the funeral home’s front doors. Even when they’re out of sight, you can hear their occasional, lively chirps, particularly if you’re in any of the nearby pastel-hued rooms on the first floor. Say, the powder blue chapel, the pink viewing room, the green family meeting room, or the front office where office associate Elaine Kincaid has found a way to answer the ever-ringing phone with a pressing sense of compassion.
By contrast, it’s nearly pin-drop-silent in the upstairs casket showroom, where, if you were preparing to bury a loved one, you would arrive to find a selection of 30-plus casket models in every variation of wood and steel. Should you be cremating your loved one, there’s an adjoining hall where you could select an urn, each one of them unique in presentation and name — “White Orchid” for the porcelain vase and “Solitude” for the simple, gold rectangle. You could also turn loved ones’ cremated remains into jewelry, a keychain, a bench or, in the words of Miranda Robinson, Milward’s youngest mortician, “pretty much anything you want.”
Like Milward funeral home, Miranda Robinson is polished and professional. Yet, at 30-years old, she both embodies and defies the stereotypes often associated with morticians. Yes, she has a fascination with death and dying. Yes, she loves the skeletal system, owns a black cat, and displays a ouija board on her apartment’s living room table — but she’s anything but morose. In fact, her bubbly Kentucky drawl is often interrupted by a burst of up-swinging giggles, even while discussing death. She used to be a cabaret performer and closely follows RuPaul’s Drag Race. Her most-used word is “lovely” and her retro-feminine personal aesthetic matches that same description.
At around 5 feet, 4 inches tall with an obvious flair for vintage, Miranda pays almost as much attention to her own presentation as she does to those on her embalming table. Robinson clips in hair extensions that she curls every morning. Her arms, which remain covered while at work, are decorated with tattoos. One of them is of a bottle of embalming fluid.
Still, at first blush you’d never guess that Robinson works with the dead on a daily basis. And, perhaps, you’d never guess how many women her age are actively entering the field, either. Frustrated by nursing school and looking for a change, Robinson shifted gears from aiding the living to preserving the dead, and enrolled in mortuary school in Cincinnati, Ohio. In doing so she joined the ranks of young women now outnumbering men in the mortuary education system. In fact, the National Funeral Directors Association reports that, “While funeral service has traditionally been a male-domination profession…today, 60% of mortuary science students in the United States are women.”
Once a male-dominated industry, after-life and funeral care is now becoming not only a budding, female-centric space but also one ripe for disruption. And no one knows this better than Miranda. “Even in mortuary school, I was taught that [funeral service] was still a different, difficult field for women.” She explains, “Women, so I’ve heard, were expected to wear skirts and heels still, so it seemed, before I got into the funeral home, that [the] funeral service [industry] hadn’t come a long way for women… but now that I’m here, I feel like I’ve made my mark and I’m really seeing women in funeral service emerge.” They’re emerging and they’re excelling, bringing with them calm, care, and attention to detail that may have long been lacking.
While embalming, Miranda says she feels like “both an artist and a scientist,” because her work combines aspects of both. Made prevalent during the Civil War, when bodies of fallen soldiers were shipped back home for viewings and funerals, embalming is a technique used to preserve the deceased by replacing a portion of their blood with chemicals (including formaldehyde). The body is also made up to look as it did in life — lipstick and all. But, while this method may long be favored in the United States, a new wave of green burial options seeks to challenge the traditional funeral industry. In fact, for the second year running, cremation is now more popular than burials, and the National Funeral Directors Association only expects this trend to continue.
That’s because green burials, alternative and eco-friendly practices are popularizing. Some of these green practices, like home funerals and vigils, pre-date the popularization of embalming, while others like bio-urn cremation (when the body’s cremated remains are buried and grow with the seeds of a plant) or aquamation (a proposed way of breaking down a body using water rather than fire) are brand new. Whether the increased options in funeral care signify an impending end of the traditional funeral industry that Miranda is a part of is a matter that may only be answered in time. For now, what it does mean is that this freshly energized attention to death care is bringing light to a space that, despite touching every single life on Earth, has largely been kept in the shadows.
Ultimately, it is not the method of end-of or after-life care that concerns women like Miranda, but rather the instinct to talk about death in a meaningful way, early and often. Miranda loves her job because what she does helps bring peace to grieving families. She explains, “The most beautiful thing about my job, is taking the loved one into my care from a removal, especially when family is gathered, just that intensity of how much they love that person. It’s an absolute honor to be in the worst possible moment in someone’s life. To be there and for them to look at me and just me to try to at least give them some answers, to try to give them some peace in that moment.”
And while it may seem strange to light up while talking about death, it’s a conversation everyone will someday need to have, regardless of personal preference or spiritual beliefs. Miranda has this conversation every day — at work, at home, with her 1,859 instagram followers — and in doing so helps to de-stigmatize a topic that’s long been off-limits.
As a mortician, Miranda believes that viewing the body is of the utmost importance. As she puts it, “I think it’s important to see the body because you face the reality of what’s actually happened.” But, it’s the trend toward personalization, transparency and increased discussion around death and dying that continues to be a universal priority for many women working in both alternative and traditional funerals.
For Miranda, part of this conversation means addressing the details of her own funeral. And, of course, she can’t imagine anything more fitting than a traditional embalming. Ever the enigma, while her choice to embalm may be traditional, her last look will be anything but. Robinson would like a “glitter casket” with a leopard interior. Dark brown extensions will be clipped and curled, her lips will be painted in the bright red pigment Ruby Woo by Mac. Years from now, when that day comes, Miranda may very well lay on the table that she works alongside every single day at Milward Funeral Directors, in the storied embalming room that she considers sacred. Perhaps somewhere beneath her in the entry hall, the finches will be singing.
Complete Article ↪HERE↩!
I Graduated Law School — & Decided To Become A “Death Doula”
By Annie Georgia Greenberg
“Death is inevitable. My life span is ever decreasing. Death comes whether or not I am prepared.” These are three of the nine contemplations on death written by Buddhist teacher Atisha — and Alua Arthur reads them to clients during death meditations. As a death doula and owner of Going With Grace, an end of life and death care company, Arthur (who graduated from law school before shifting to work in the death industry) facilitates these sessions to help people who are uncomfortable with the idea of death or dying.
“Death meditation is an opportunity for people that are struggling with some fears around death and dying to confront those fears head-on,” Arthur says. “It’s not for the faint of heart. It’s an opportunity to really think about the body’s eventual decline, and to go there to see what the discomfort is, so that we can then talk about that and process that. It’s intended to soften the fear around death.”
And, true to her claim, Arthur’s work is meant to soften fears around death. “Doula” is a word derived from a Greek term meaning, “women who serve.” As a death doula, she works with clients to plan for the final stage of their lives, holds space to support them emotionally through their deaths, and ensures their wishes are met.
Arthur developed a nine-part “Advanced Care Directive” that allows clients to list how they’d like to be cared for in the event of terminal illness. It includes everything from personal grooming preferences to thoughts on life support. By filling out Arthur’s document, a client can clearly state how they’d like their social media to be handled in the event of their death and whether they’d prefer to be embalmed, buried in a bio-urn (a seed pod for ashes that nourishes the earth and grows into a plant), or anything in between. She’s helped prepare for end of life with healthy millennials, large family groups, and even her own father.
Of course, when it comes to her own funeral, Arthur, who thinks about death “all day, every day” knows exactly what she wants. If possible, she’d prefer to die outside, at sunset. And she wants to be buried in a pink or orange raw silk shroud. Her funeral will be a party filled with music (Michael Jackson is a must on the playlist). She’d like her jewelry — an extensive collection of bangles and big earrings — hung on trees and for attendees to take the pieces they like. This tendency toward bright colors, generosity and liveliness mirrors Arthur’s sensibility in life. Her smile is contagious. Arthur’s yellow and magenta and green African-print frocks are a far cry from the drab, stereotypical wares one might associate with the death industry. In fact, there’s nothing grim about her or the work she does.
Yes, Arthur’s death consultations can be heartfelt and tearful to be sure, but, as she puts it, “death can definitely be funny.” And so, she approaches each conversation with a seemingly effortless but effective sense of levity. Arthur is part of a new trend in the death industry that favors pre-planning, personalization, and, ultimately, the normalization of death as a topic of conversation. In Arthur’s vision of the world, everyone over the age of 18 has an end of life plan and is willing to talk openly about death, she says.
“I think people don’t talk about death, because we’re not really comfortable with it,” she says. “Yet, whenever I talk about my work, people always talk to me about death… I think my work gives people permission to talk about this thing that we all want to talk about anyway, yet we’re just not doing.”
So, while many of us may not all be ready to recite the nine contemplations just yet, we can take comfort in the words Arthur uses to signs off on all of her Advanced Care Directives: “Yes, one day you and I will die, but before that day, let us live.” When she says those words out loud, she can’t help but smile.
Complete Article ↪HERE↩!
When someone hovers at the edge of death, these singers step in to ease the passage
by Debra Bruno
[I]t’s a quiet afternoon at the Halquist Memorial Inpatient Center, a hospice, as four women huddle close, talking quietly in a tight circle before walking through the doors to sing to men and women on the threshold of death.
These women are part of the Threshold Choir, a group that brings the comfort of song to dying people.
A thin woman, who is in the last weeks of life, is the choir’s first stop. She is sitting nearly upright in a hospital bed, her daughter beside her. Leslie Kostrich, the group’s leader for this day, asks the older woman if she would like to hear a few songs. She nods; the singers set up folding stools and pull up close to her bed.
“We sing in a circle of love,” the women sing, a cappella and in three-part harmony. “In music we are joined.” As they sing, the woman gazes off with a faraway look in her eyes, as if she’s trying to remember something.
The group sings another song, and as they finish, the older woman claps softly. “Thank you,” she says. “Nice.”
It takes sensitivity, situational awareness and a dash of emotional intelligence to sing to the dying. The sound of soft harmonious voices can be very comforting as life closes down, but the songs can also bring forward the immediacy of death to family members sitting nearby. Singing in such an emotional environment takes practice and a recognition that it is less a performance than a service.
For the dying and their families, the singers are hoping to bring peace, comfort and a feeling of love. “We call it kindness made audible,” says Jan Booth, who with Kostrich is co-director of the Washington-area Threshold group.
It is also very life-affirming for those who sing in this unusual choir.
“When I tell people I’m in a choir that sings at the bedside of the dying, they’ll say, ‘Oh girl, what a good thing,’ or ‘Girl, you must have lost your mind,’ ” says Kadija Ash, 66.
But the opposite is true. “Sometimes I run” to rehearsals, she says, “because of the healing.” In the two years she has been a member of Threshold, Ash says, she has gone from having a fear of death to an ability to be more accepting of life’s ups and downs.
Kostrich, 60, who has been with the group for three years, likewise says: “This has changed my life. That’s not an exaggeration. It gave my life a spiritual dimension that I was totally unprepared to receive.”
Threshold Choir — which has more than 200 groups around the world — seems to have tapped into something both primal and much-needed: a growing desire not to recoil from death or abandon the dying but to face that ultimate truth and figure out how to help ease the isolation of those near the end.
Bedside singing is a way of “normalizing death,” says Kate Munger, 68, who founded the first group in the San Francisco area 18 years ago. Many of the choirs are started and run by baby boomers, who are comfortable shaking up the accepted way of doing things, Munger says. “We’ve done that for childbirth, for education, and now for our impending death.” She says the number of people participating in Threshold Choir has grown to about 2,000.
Similar deathbed choirs have also surged, including Hallowell Singers, based in Vermont, which recently celebrated its 15th year, says founder Kathy Leo. She estimates that Hallowell has as many as 100 spinoffs, mainly in the United States.
Although they sing some requested songs, such as “Amazing Grace,” Threshold Choir mostly uses a repertoire designed for singing around a dying person. The pieces tend to be limited to just a few words, and sung without accompaniment in three-part harmony.
The idea is to keep things simple and not tied to any spiritual tradition — for instance, “Thank you for your love” and “We are all just walking each other home.” Complicated verses could intrude on the process of dying, which often involves people retreating from the day-to-day and reviewing their lives.
During the afternoon at Halquist, the four Threshold singers — Booth, Kostrich, Ash and Margo Silberstein — move out into a hallway after their first group of songs. One hospice staffer says, “I love working on Thursdays because I love listening to this group.”
The group slips into another large room with four beds separated by curtains. A frail woman with brilliant blue eyes smiles at the group. In another bed, someone is making noises that are halfway between breathing and groaning.
The blue-eyed woman asks, “Do you know ‘A Mighty Fortress?’ ” The group knows some of the words to the hymn but ends up mostly singing “oooo” to its tune. After they finish, Kostrich offers, “We do have ‘Amazing Grace.’ ” “Oh yes,” the woman answers and quietly sings along with them. After they finish, she says: “Oh, thank you. That was just wonderful.” They go on to sing “Simple Gifts” and “He’s Got the Whole World in His Hands” and then a few Threshold songs.
A TV next to a different bed blares.
After they finish, they approach a man sitting at the bedside of a woman. Can they sing?
“She’s pretty well gone out, but you can try,” he says.
As they sing “Hold this family in your heart,” the man’s eyes redden. He shifts in his seat. They sing, “Rest easy, let every trouble drift away.” His chin starts to tremble. As they begin to sing “You are not alone,” the woman begins to breathe more loudly but doesn’t move. The woman in the bed across the room, where they first sang, calls out, “Beautiful!”
An hour later, as the group gets ready to leave the hospice, Kostrich says that singing with Threshold has given her a way to process her own family’s experiences with death. When her parents were dying in the 1980s, Kostrich says, no one acknowledged they were close to death, which didn’t allow her and her family to come to terms with the losses themselves. The Threshold Choir has both helped her in a small way alleviate her own loss and help others avoid that kind of pain, she says.
There’s another thing that comes out of Threshold singing: community. And that feeling is evident when group members get together for a twice-a-month rehearsal, often in a church basement in the District. All but one singer at this rehearsal is female, but they range in age from 20-somethings to 70-somethings, African American, Chinese and white, those with tattoos and those with carefully coifed hairdos. There are a lot of hugs and laughter.
Olivia Mellon Shapiro, 71, says that group members are her “kindred spirits.” When she retired from her work as a psychotherapist, she told a friend, “Now I want to sing people out in hospices,” Shapiro says. “My father sang himself out — he died singing, and I was very moved by that.” Her friend said, “Oh, that’s the Threshold Choir.”
“Now I have a new group that feels like home to me. It really does,” she says. “I’ve also always been a little afraid of death and dying, but I’ve always loved the idea of hospices. So the idea of singing people out in hospices to get more comfortable with the idea of death and dying appealed to me.”
(The group sings several times a month at Halquist in Arlington and also at Providence Hospital in Northeast D.C. through the nonprofit hospice provider Capital Caring.)
One of the singers, Lily Chang, 28, notes that the choir is helping her confront her own fears of loss.
Chang says she’s very close to her grandmother and, given her age, worries about her. “I remember telling my mom, ‘I don’t know what I would do’ ” if she died. “Thinking about it, engaging with it in different ways makes me feel better.”
Complete Article ↪HERE↩!
Truly understanding the differences between palliative care and hospice
By Terri Maxwell, Ph.D., MSN
[C]are at the end of life should address all of the important elements that play a critical role in ensuring a positive end-of-life experience for patients and families. Therefore, quality end-of-life care extends beyond managing physical pain to include psychosocial and spiritual needs.
Not all long-term care professionals carry the same understanding of the issues.
Frequently, nurses serve as advocates to support patients and families in making care decisions based upon their goals and values. Ideally, physicians, nurses and other team members work together to create an atmosphere of care and compassion in accordance with patient and family wishes.
Although hospice and palliative care both aim to deliver quality holistic care, there are key differences.
The dimensions of hospice care
Hospice is the model for quality compassionate care for people facing a life-limiting illness. Hospice clinicians focus on pain and symptoms, and attend to the patient and family’s emotional and spiritual needs. Hospice is offered at a patient’s residence, such as their home or nursing home, or, if needed, in a hospice facility.
Hospice programs utilize an interdisciplinary team (IDT) approach to plan the care needed by patients and their families during the final weeks and months of life. The IDT is comprised of nurses, chaplains, social workers, physicians and medical directors, hospice aides, volunteers, bereavement specialists and other clinicians who develop and implement a plan of care that is formulated to relieve anxiety and suffering during the final months and weeks of a patient’s life. This approach allows the team to address physical, emotional, spiritual and social concerns that arise with advanced illness.
Hospice is available to people with all types of conditions and diseases, and focuses on comfort — not cure. Hospice provides care for the “whole person,” including physical care, counseling, spiritual needs, drugs, equipment and supplies related to the conditions that comprise the terminal prognosis. It also supports family caregivers, including bereavement support for up to a year after the patient’s death.
Financing hospice
Hospice care is reserved for people at the end of life who meet Centers for Medicare & Medicaid Services eligibility requirements and elect a comfort approach to care. The Medicare Hospice Benefit (MHB) requires that two physicians certify that a patient has less than six months to live if the disease follows its usual course. However, if a patient is still alive after six months, he or she can continue to receive hospice services if he or she meets eligibility requirements and demonstrates signs of progressive decline.
When a patient elects hospice, they sign off their Medicare Part A (hospital insurance) and enroll in hospice under the MHB. From that point on, hospice covers all services and care related to the terminal diagnosis and related conditions through Medicare, Medicaid and most commercial insurance.
The hospice IDT, together with the patient’s attending physician, is responsible for determining the plan of care. Under terms of the Medicare Hospice Benefit, the hospice agency is responsible for the plan of care and may not bill the patient for services. All costs related to conditions that affect the terminal prognosis are paid from a per diem rate that the hospice agency receives from Medicare. This per diem rate includes all drugs and equipment, nursing, social service, chaplain visits and other services deemed appropriate by the hospice agency. Care and medications not related to the terminal illness or related conditions continue to be paid for through original Medicare.
Distinctions of palliative care
The biggest differences between hospice and palliative care revolve around where the patient is in their illness related to prognosis, their goals/wishes regarding curative treatment, and how palliative care is financed.
Palliative care focuses on relief from physical suffering and caregiver burdens for individuals who are living with a chronic disease that may or may not be terminal, addressing their physical, mental, social and spiritual well-being. Atul Gawande recently defined palliative care “as the field devoted to providing people with serious life-limiting illness with expert care that serves their goals for quality of life, not just quantity of life.”
Similar to hospice, palliative care utilizes an interdisciplinary approach with highly trained professionals, including physicians, nurse practitioners, nurses, social workers, chaplains, and other disciplines.
Palliative care can be offered to people of any age, without restriction as to disease or prognosis. It may be appropriate for anyone with a serious, advanced illness, whether he or she is expected to recover fully, live with chronic illness for an extended time, or experience disease progression. Unlike hospice, patients receiving palliative care may continue to receive aggressive treatments, including life-prolonging therapies.
Conditions appropriate for palliative care include cancer, congestive heart failure, end stage renal or liver disease, chronic obstructive pulmonary disease, and dementia, among others. While palliative care is often appropriate earlier in the disease trajectory, referrals to palliative care clinicians are often not made until late in the disease process.
Palliative care focuses on relieving symptoms, such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite, difficulty sleeping and depression. Palliative care providers also support patients in carrying on with daily life so that they can tolerate medical treatments. In addition, patients receive support that empowers them to have more control over their care by improving communication so that they can better understand their choices for treatment. Helping patients and their caregivers coordinate care across care settings is a hallmark of palliative care.
Financing palliative care
Unfortunately, palliative care programs struggle financially because there is no reimbursement code specifically for palliative services and Medicare does not reimburse for interdisciplinary care management. Hospital-based palliative care is paid by the health system with some fee-for-service (FFS) billing for physician services. Medicare Part B covers physician and nurse practitioner (NP) fees for outpatient care delivered in the community or in clinics. Therefore, most community-based palliative care programs utilize NPs and physicians for home visits.
Other disciplines, such as nurses and social workers cannot bill Medicare for palliative home visits. Palliative care is also paid for through flexible bundled payments under Medicare Advantage, Managed Medicaid, ACOs and other commercial payers.
While Medicare doesn’t have a palliative care benefit, CMS has authorized demonstration projects that are testing different ways of meeting the needs of seriously ill patients. The Medicare Care Choices Model allows patients to receive hospice-like support services while concurrently being treated for their illness.
Demonstrated value
Costs for palliative care teams and programs are offset by fewer trips to emergency departments and lower hospitalization and rehospitalization rates. In addition, patients and families rate the value of palliative care services highly. This explains why 80% of hospitals with 50 beds or more have established palliative care teams and some are starting to consider outpatient palliative care programs. In addition, health plans and payers, including Accountable Care Organizations (ACOs), Integrated Delivery networks (IDNs) and other types of provider-driven managed care organizations, are beginning to offer community-based palliative care programs to their patients/members to extend the benefits of palliative care into the home.
Palliative care programs and advance care planning that include earlier conversations about patient and family goals of care are consistently demonstrating their value in helping patients live their final days in accordance with their wishes. Data shows that in communities that provide greater access to palliative care programs, patients are less likely to die in the hospital.
Furthermore, findings show that patients experience fewer admissions to the intensive care unit in the last six months of life and are less likely to die in an ICU
Today, palliative care is becoming recognized as option at any stage of advanced illness, not simply reserved for care at the end-stage of life. Its use should be driven by patient need, not disease prognosis. Hospice care remains the gold standard for end-of-life care. Together, hospice and palliative care offer compassionate care when it is needed most.
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How Virtual Reality Can Help You Face Your Own Mortality
[I] was in elementary school when I first became aware of my own mortality. It was early in the morning. My mom was in the bathroom getting ready for work, and I was on her bed covered in tears, thrashing around and yelling “I don’t want to die!” over and over.
Like a lot of people, dying terrifies me, the finality of it so unthinkable that I try not to acknowledge it in my day-to-day life. So when an opportunity came to go to “Second Chance” — an interactive experience that uses theater and virtual reality to help people come to terms with their demise — I was both scared and intrigued. It was one of 175 activities that took place during Reimagine End of Life week in San Francisco, an event that consisted of panels, film screenings, and other experiences that encourage people to talk openly about death and how it affects us.
SF-based art collective Lava Saga spent three months creating “Second Chance,” transforming a two-story gallery in the city’s Mission district into an ethereal environment.
“We believe that immersion is a way to experience things, and when we have those lived and bodied experiences, we can start to answer some of those big questions around death or around life itself or any other big topic we’d like to explore,” said co-producer Scott Shigeoka in an interview.
“Second Chance” only allowed 10 people in at a time, and they all had to be strangers (one of Lava Saga’s few hard rules). It unfolded across four different rooms, with VR serving as a key piece of the production. My group entered the first space — a darkened room lit only by blue and purple lights — and found black futons on the floor, all of which had pillows and neatly folded white sheets. Next to them were Samsung Gear VR headsets and wired headphones that attendants asked us to put on after we sat on the beds.
The nearly four-minute VR sequence pulled me through a monochrome landscape filled with massive planets, intricate caverns, and pulsating tendrils that pierced the sky. An otherworldly hip-hop track from electronic artist Shigeto made the 360-degree journey feel lonely and isolating.
When the experience was over, I took the headset off and laid on the bed; another person came to pull the white sheet up to my neck. A cellist at the corner of the room began playing a peaceful but melancholic tune. I closed my eyes as our end-of-life doula (who had spoken to the group beforehand to address any concerns) read a poem from Buddhist monk Thich Nhat Hanh.
As far as the “Second Chance” narrative was concerned, we were dead.
Simulating Death
Surprisingly, the VR music video wasn’t made for “Second Chance.” It’s a pre-existing project (known as “Hovering”) from creative studio 79 Ancestors. Lava Saga worked with VR and augmented reality curator Dream Logic to determine what kind of piece would best represent the transition between life and death.
It wasn’t easy. For awhile, they wondered whether they should even have a symbolic representation of death. After all, how do you visualize an experience that, by definition, is impossible to come back from?
“We picked [‘Hovering’] because it feels like going through a portal. And with VR in ‘Second Chance,’ we wanted it to serve that function, to be a transporting mechanism that people could go inside, be transported, and come out into a shifted reality,” said Dream Logic producer Kelly Vicars.
Though “Hovering” wasn’t created with “Second Chance” in mind, its abstract graphics made it a fitting choice for the production. During the design process, Lava Saga interviewed people who had near-death experiences, with many of them saying they were moving through a tunnel or seeing black-and-white images before being resuscitated. “Hovering” also worked well because it wasn’t scary and didn’t adhere to any specific religious beliefs.
“It was important for us to honor the diversity of cultures, traditions, and wisdom around death. … We wanted to make sure that whatever experience we used was really inclusive,” said Shigeoka.
Lava Saga and Dream Logic knew that for a lot of people, “Second Chance” would be their first opportunity to be in VR. So they tried to make the experience as seamless as possible, with attendants giving clear instructions on how to use the equipment. And Gear VR offered the least amount of friction due to its portability and ease of use (when compared to PC-based gaming headsets like Oculus Rift and HTC Vive). Participants just had to put it on and wait for “Hovering” to begin.
“My team’s goal is to use immersive technology to elevate art, to have the technology disappear,” said Vicars.
Breaking through taboo topics
After dying in VR, my group entered a series of rooms that represented a kind of liminal purgatory state. One had thin sheets of white fabric hanging from the walls and ceiling, with actors and dancers (Lava Saga refers to them as spirits) talking to each other about their previous lives.
From there, “Second Chance” starts to pull back on its mystical interpretations of an afterlife and morphs into something a little more grounded: group therapy.
In the third room, we broke into two smaller groups with trained facilitators who asked us questions about our own lives. Shigeoka said this was often an “emotionally charged” space because of the stories people would share — about their hardships, mourning for loved ones who died, or anything else they just needed to talk about. This vulnerability is why it was so vital to go through “Second Chance” with strangers instead of friends or family members.
I didn’t let my guard down completely. I couldn’t quite squash the skeptic voice in my head, which was too loud and too stubborn to go away. But I still felt comfortable in those discussions, as well as in the 1-on-1 meetings that followed in the last room, where we were randomly paired with another person from our group. That I was able to share personal details about my life at all was remarkable given that we had only met an hour before.
“Second Chance” wasn’t a perfect experience; at times, I was bored or confused about what was going on. But the core conceit — getting people to express their feelings about a sensitive topic — was sound. It reminded me that sometimes, it feels good to have someone just listen to you.
“I hope that people emerge [from ‘Second Chance’] with a new perspective and a new relationship with what it means to die. And that’s [to] live,” said Vicars.
Lava Saga and Dream Logic consider this first run as a prototype. If the show ever returns (whether in San Francisco or elsewhere), they want to keep refining it based on the feedback they receive. One day, they might make their own VR experience to replace “Hovering,” or maybe even depict that life and death transition in a totally different way.
But the idea of using theater and immersive technology to break through cultural taboos is something both teams want to keep exploring.
“It’s so important for us to open up about [death] and it’s so important for us to change the narrative around it, to make it something that should be discussed and talked about. … We need to have a conversation that goes beyond the medical world around the end of life,” said Shigeoka.
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