Is there greener life after death?

An alkaline hydrolysis device

By Tom Jokinen

In Winnipeg in a January blizzard, there are few places as toasty and sheltered as a crematorium. I know this because I worked in one. When the cremation chamber, or retort, is firing at 1,600 degrees Fahrenheit (900 Celsius), the work space is balmy, like a ski lodge. The noise of the powerful gas jets is buffered by the stone and steel of the machinery. When the gear is running, all you hear is a low, soothing rumble. It’s peaceful. I used to read Eudora Welty short stories while the body burned, stopping regularly to monitor temperatures and stoke the remains with an iron hook passed through a small, eye-level porthole in the oven door. The process is conducive to reflection.

Cremation seems clinical: fire, ashes. But in fact there is enormous spiritual heft behind it. We talk about the cleansing power of fire. As a funeral rite it goes back to the Bronze Age at least. “Fire,” writes the philosopher Gaston Bachelard, “magnifies human destiny, it links the small to the great, the hearth to the volcano.” Man “hears the call of the funeral pyre” not as destruction but as a road to renewal. This is overstating the case, as French philosophers do, but it still scans. Now try saying the same about a chemical process.

Last week, I read a story about a new process called alkaline hydrolysis. In a nutshell, it’s like cremation without the fire: The body is immersed in chemicals in a cylindrical device that looks (judging from the photo, as I’ve never seen one up close) like a large telescope with an Instant Pot lid. The chemicals break down the soft tissue, which is flushed away, leaving behind bones and any non-organic residue such as tooth fillings or artificial hips. The device is called a Resomator, a Doctor-Whovian commercial euphemism for what is basically a body-dissolving machine.

Industry licensing bodies such as the Bereavement Authority of Ontario are not sure what to make of alkaline hydrolysis. Is it safe to just flush the liquefied organic material into the city sewage system? Are there health risks? Is it dangerous or just very, very creepy? Is it any creepier than cremation – or burial for that matter? For now, though, its main selling point is that alkaline hydrolysis is considered greener, or less carbon-intensive, than other methods.

According to the Ecology Action Centre, the average cemetery buries 4,500 litres of formaldehyde, 97 tonnes of steel and 56,000 board feet of hardwood per acre. A single cremation, which intuitively (and emotionally) seems so clean and efficient, uses as much fossil-fuel energy as an 800-kilometre car trip. Sulphur dioxide and mercury are released into the atmosphere, up the flue. That warm feeling on a January day in Winnipeg comes at an ecological cost.

Meanwhile, hydrolysis uses one-eighth the energy spent in cremation. There is no embalming, no casket or container. Even with cremation, there is always a container of some kind, including, in my experience, very expensive hardwood caskets with brass trimmings. So alkaline hydrolysis is marketing itself thusly: your green alternative.

When you’re dead, there are few options for what happens next. I don’t mean spiritually – that’s between you and your God or His/Her metaphysical substitute. I mean with the body. We all leave a remainder. Some more than others. You can bury it, sink it in the sea, leave it in the trees or on hilltops to be devoured by carrion birds – known technically as excarnation, a natural process of removing the flesh before earth burial (in Tibetan and Comanche cultures, known as sky burial) – or most commonly you can burn it. In Canada, the cremation rate varies by region, but in 2018 more than 61 per cent of the dead in Ontario and Manitoba and more than 71 per cent in Quebec were cremated. The national cremation rate is expected to rise to 76.9 per cent by 2023, according to the Cremation Association of North America.

For the funeral industry, cremation has always been a shoe that pinches. It’s an industry based on the pricing of intangibles: the meaning of life and death, ritual, the concept of “closure.” It has been able to translate the emotional turbulence of death into product (caskets, vaults, embalming) and real estate (cemeteries), but over the past 50 years has watched as a cultural revolution changed everything. Religion loosened its hold, and fewer people felt bound by tradition. Cremation was cheaper. People moved around – for work, for relationships – and the idea of a permanent resting place lost its appeal. Postmodernism struck the funeral industry: Meaning and ritual came down to personal taste.

So the industry reinvented itself. Funerals became “celebrations of life,” and funeral directors became event planners like those who booked weddings (and the cost of weddings, they noticed, was skyrocketing). If cremation was on the rise, it could surely be monetized: urns shaped like golf bags, garden watering cans or basketballs, depending on the hobbies of the dead in question. Cemeteries focused on marketing columbaria, the small, above-ground vaults for urns.

I once met a cemetery salesman who assured me that scattering human remains was illegal (not true) and that he himself once stepped on a human bone on a beach in British Columbia (unlikely, as most crematoria process the remains to a fine, biologically inert powder). His sales pitch was simple: Only the industry knows how to handle what we all leave behind – the rest of us are not equipped. It’s a powerful message. As Jessica Mitford, author of The American Way of Death, found out, people will pay to avoid dealing with death and will subcontract what is basically an existential puzzle (what’s to become of me?) to a professional.

But it’s possible to be too clinical. We like at least a little meaning with our rituals, especially the death rituals. “Belief in a future state,” writes Bertram S. Puckle in Funeral Customs: Their Origin and Development, a 1926 text, “presupposed a material existence after death, with corresponding material necessities. Food must be provided, weapons and clothing, and a supply of charms with which to ward off evil influences.” And so even today people are buried with iPhones or cremated with a blanket from home. This is not superstition. It is about doing the right thing, even if the thing is a complete mystery. Alkaline hydrolysis is maybe too much like a chemistry experiment to bear much meaning.

And the industry continues to adapt and innovate. An Italian company used to market the Capsula Mundi, a starch-based, acorn-like pod that calls for no headstone as it, with the body, dissolves in time as compost and produces a tree. Demand, it turns out, was slim. Now the company offers an egg-like urn for cremated remains that does the same job for US$457 – tree not included. (But again, there’s the carbon footprint of the cremation itself.)

Straight-up green burial – in a shroud, with no embalming, in a legally designated forest (the law frowns on “freelance” burial) – is sparsely available. The industry has never embraced it.

Maybe it expects greater things from alkaline hydrolysis. After all, if meaning is and always will be knit deeply into our death rituals, it ticks the right boxes: In life, we rejected plastic straws and used twirly light bulbs. In death, we were thus safely melted. Carve it into your tombstone.

Complete Article HERE!

Netherlands nuns convert former battlefield to “natural burial” cemetery

Natural burials are a return to the old-world way, which avoids chemicals and resource waste.

By J-P Mauro

In a gorgeous plot of land that was once the site of the Battle of Arnhem in World War II, the Trappistine Sisters of the Abbey of Koningsoord in the Netherlands have opened a new cemetery where they will be providing natural burials.

“Natural burial” is a term that describes the burial practices of humankind for the majority of history. The process avoids embalming chemicals, as well as steel or cement vaults that are placed underground to protect the coffin from the natural course of decomposition.

These natural burials are becoming more popular today, as they are substantially more eco-friendly than the modern burial. According to Order of the Good Death, a website that supports the return to natural burial, modern burial practices can take a hefty toll on the environment, and squander valuable non-renewable and non-biodegradable resources. They write:

“American funerals are responsible each year for the felling of 30 million board feet of casket wood … 90,000 tons of steel, 1.6 million tons of concrete for burial vaults, and 800,000 gallons of embalming fluid. Even cremation is an environmental horror story, with the incineration process emitting many a noxious substance, including dioxin, hydrochloric acid, sulfur dioxide, and climate-changing carbon dioxide.”

At the Trappistines’ new cemetery, known as Koningsakker — King’s Field — the nuns are trying to remedy these ecosystem compromising factors by returning to the old methods of burial. Hettie van der Ven of Crux news reports that bodies there are not encased within a casket, but rather wrapped in a burial shroud made from linen, jute, hemp and wool that will biodegrade much faster. This avoids wasting natural resources and burying forever materials that would have impeded the decomposition process.

The sisters told Katholiek Nieuwsblad Foundation, a Dutch Catholic news organization, that they were inspired to open the cemetery by their American sister-house, The Trappistine Sisters of the Abbey of Our Lady of the Holy Cross, in Virginia, who opened their own natural burial cemetery several years ago. The cemetery will provide the sisters with funds to sustain them, along with a book bindery and a restoration workshop.

While originally intended to serve as a Catholic cemetery, Koningsakker is now a public cemetery and the nuns welcome people of all faiths and walks of life, even those who come from foreign lands. The nuns feel that this was the right way to go, as it gives their graveyard an opportunity to impact a much wider range of the community. Riny Bergervoet, the cemetery’s location manager, said:

“Natural burials are a perfect fit for this day and age. At the end of their lives, people are looking for connection with the ground they came from and on which they are living … Choosing this as a resting place is a testimony to one’s identity. People know that we are praying for them on a daily basis, which they find very uplifting.”

CruxNews reports that Koningsakker currently only has four people buried on their property, but dozens have already reserved a plot. It’s only a matter of time before this “natural cemetery” will be full of people visiting their beloved lost.

Complete Article HERE!

A Documentary of Funeral Care for Abandoned AIDS Patients

With restrained camera work, “Departing Gesture” shows the process of a solitary funeral and burial, tended to by funeral-home staff.

By Sarah Larson

Jonathan Napolitano and Brian Bolster’s eleven-minute documentary “Departing Gesture” opens inside a suburban-style funeral home, with a long shot of a visitation room, where a white-haired man in a red necktie appears to be setting up for a wake. The casket is open, the flower arrangements generous and autumnal. The only people we see are the man in the coffin and the man taking care of him. “It happens more than you think,” a man’s says, in a voice-over. “Maybe ten or twelve deaths a year, I think, where their family would abandon them and never come back.” The film gives us a minute to contemplate this—the screen goes dark and shows a title card, and then the camera lingers on an exterior shot of the tidy funeral home. Who would abandon their late relatives, and why?

“Departing Gesture,” the first film in The New Yorker’s new series highlighting short documentaries, sheds light on this story patiently and with care. It focusses on the Sebrell Funeral Home, in Ridgeland, Mississippi, whose director, Trey Sebrell, is the person we have just heard speaking. Bolster’s camera observes the funeral home, both its public-facing rooms and its behind-the-scenes areas—offices, an embalming room—as we listen to Sebrell talk. “It’s one of those professions that, once you’re involved, you feel like you’re serving,” he says. “Even if I did not love working for myself, I still would be a funeral director and an embalmer at another funeral home in Mississippi.” As Sebrell goes about his work, in a suit and cufflinks, his movements have a calm certitude.

Sebrell Funeral Home has a partnership with a local charity, Grace House, which provides care and housing for people with H.I.V./AIDS; Sebrell cares for its dead, some of whom are ultimately abandoned by the family members who survive them. These families don’t hold a service and don’t want their relative’s remains. In the film, we watch the process of a solitary funeral, of sorts, and a burial, tended to by funeral-home staff.

Many of us have been in funeral homes like Sebrell’s and have attended memorials of various sizes—the wakes that teem with mourners, the calling hours that feel underpopulated. Either circumstance can enhance the sad surreality of death; in this case, the sadness is heightened further still. Bolster’s camera remains static, at a respectful distance, as it watches people at work: a man with flowers, a woman tending to the deceased’s makeup, pallbearers bringing the casket to the hearse. Other shots show us caskets, a lectern, the embalming room and its tools, embroidered seat covers that say “pallbearers.” The restrained camerawork subtly heightens the contrast between life and death, movement and stillness.

Bolster and Napolitano met on the film-festival circuit and have worked together on several projects; for “Departing Gesture,” Bolster shot and Napolitano edited. They met Sebrell in the course of working on a feature, still in development, about H.I.V./AIDS in the American South. The South has become the epicenter of the crisis in the United States, owing to factors including poverty, cuts to health-care funding, and social stigma. And H.I.V. infection in rural areas and smaller cities is on the rise. “I’m very interested in issues of regret,” Bolster told me. As a boy growing up in Massachusetts in the eighties, knowing that he was gay, Bolster watched reports of the unfolding AIDS crisis and the ignorance and fear that surrounded it. “Families abandoned their kids in hospitals,” he said. “I thought, This is what’s going to happen to me.” In 2019, an era of PrEP, undetectable H.I.V. viral loads in well-cared-for patients, and nationwide marriage equality, it can be stunning to see and hear about present-day ignorance that reminds us of decades past—for example, when Sebrell mentions a local funeral home that refused to collect a man’s body after learning that he was gay. “Departing Gesture” gives us a window into such stories with compassion, through Sebrell’s empathy and its own.

Complete Article HERE!

Choosing death during a life with debilitating disease

By SHEILA HAGAR

Donna Coffeen remembers hearing about Washington state’s Death with Dignity Act when it passed in 2008.

That legislation allows terminally ill adults who want to end their life ask for lethal doses of medication from a physician.

Eight states, including Oregon, have right-to-die laws.

Coffeen was especially alert to the matter. Her husband, Jon, had been diagnosed with Parkinson’s disease in 2003.

Both Coffeens researched Death with Dignity and were pleased with their findings at first, she recalled.

Parkinson’s is a progressive nervous system disorder that affects movement. The symptoms start gradually, sometimes with a barely noticeable tremor in just one hand. Tremors are common, and so is stiffness or slowing down, according to the Mayo Clinic.

Those issues contributed to why the Death with Dignity act would fail Jon, who could no longer swallow by himself by the time he died last year.

Fatal doses of medication must be self-administered under the law.

Donna, a lifelong educator, wants others to know more about physician-assisted death and what changes would benefit others in her husband’s situation. Particularly in an area like Walla Walla, with fewer health care options, she said.

The Coffeens had been sure of two things for the past several years: Parkinson’s would take Jon’s life too soon, and he didn’t want to end up in a wheelchair or dependent on a caregiver, Donna said.

For better or worse

The couple met while attending Walla Walla University. Their engagement photo, a study of the 1970s in hair and wardrobe, shows two faces glowing with contentment. They married March 19, 1978, in Donna’s hometown of Miles City, Mont.

Jon had arrived in the Walla Walla Valley at age 12, when his family bought 35 acres of farmland along Old Milton Highway, south of College Place. While he and Donna were teaching middle school at Milton Adventist School, Jon built a custom home on a section of that land, Donna said.

“He would get up at 5, come build on this house, teach all day, then build on it at night.”

Jon craved activity. For 41 summers he fished commercially in Alaska. He built fiberglass boats. He loved to hunt and hike and camp. He served with Walla Walla Fire District 4 for more than 20 years, his wife said.

It seemed especially cruel when Jon got the diagnosis of Parkinson’s at age 49. By then, some signs had been present for a few years, such as unexplained fatigue and pain.

The average onset age of the disease is 60, according to Parkinson’s resources.

Donna said Jon was determined to stay healthy as long as possible, despite the diagnosis. Their sons, Phillip and Aaron, were just entering adulthood, and the parents were becoming more free to have adventures.

“He fought as hard as anyone could,” Donna recalled.

“He had nine surgeries in 11 years. He walked every day. He exercised. ”

In 2009, Jon underwent a procedure known as DBS, or deep brain stimulation. A surgeon implants a device similar to a heart pacemaker in the brain. The neurotransmitter delivers electrical stimulation to targeted areas in the brain, blocking the abnormal nerve signals that cause tremors and other Parkinson’s symptoms, said Sherri Woodbridge in writing for Parkinson’s News Today.

Doing so added five or six years of “high quality” life to her husband’s timeline, even letting him captain his fishing boat another three summers, Donna said.

“It brought him back to a level of functioning … But it’s not a cure. The disease will progress past what the surgery will do for you.”

The Coffeen family could tell when Jon’s brain intervention had passed its efficacy. He gave up fishing and firefighting in the same week and eventually began falling at home. The travel they loved stopped. Jon’s exhaustion and pain enveloped everything.

Cannabis use helped a lot. “This was a man who’d never had a drink in his life,” Donna said with a laugh.

Looking back, she could see her husband was beginning to plan for the end of his life.

“I think he wanted to spare me. He didn’t want to use up our money, and he didn’t want to be in a nursing home.”

When Jon began worrying he was developing cognitive issues, “that was his line in the sand,” Donna noted.

Out of options

In September 2018, Jon mowed the lawn one day and entered Providence St. Mary Medical Center for foot surgery the next.

He ended up in rehabilitation care at a nursing home for about 10 days, his son Phillip said.

It was there his dad’s Parkinson’s symptoms worsened, likely from stress, he added.

Those increased symptoms sent Jon back to the hospital, where he spoke little and stopped eating, Donna said.

“‘This Parkinson’s is coming down on me like a freight train, and I won’t be able to make decisions soon,’ he told me. But I thought he was coming home. I bought a wheelchair and a wheelchair lift just a few days before we figured out what he was doing.”

What Jon was doing is called VSED — Voluntary Stopping Eating and Drinking. Because he could no longer effectively swallow, Jon could not drink a fatal potion of prescribed medicine, nor was that allowable at the Catholic-based St. Mary.

He was too sick to go to another hospital, Donna said.

“He was out of options.”

VSED is an intentional decision to stop taking liquids or nutrition. According to the National Institute of Health, some people at the end of their lives choose this over physician-assisted death to give them more time for family interaction and reflection. In a case of terminal illness, VSED is not considered suicide. Some patients side-step the medical system altogether when choosing this action.

Some accounts say fatal dehydration and starvation are a hard way to end life, but that wasn’t their experience, Donna said.

In any case, she’d already agreed to follow Jon’s wishes.

“He told me, ‘Don’t you dare give me water.’ He was worried about delirium but that never happened,” she said.

“It took awhile for my heart to catch up with my brain. But I had no urge to talk him out of VSED. I did some grieving in front of him, but I would never ask him not to.”

Hospital staff knew what was happening when Donna and her sons brought Jon home the day after he began the VSED process, she said.

“No one actively stopped us, but no one could officially help us. It’s a Catholic hospital; we knew it would be that way.”

Few people understand the real loss of Walla Walla General Hospital or limited medical care choices until it comes to times like these, Donna added.

Going forward

Friends continued to be a constant support, and the family made sure all home visitors were either on board with Jon’s decision or kept their thoughts to themselves.

While most VSED users die in about seven days, Jon took 12, she said, attributing that to his age.

Jon Coffeen died Oct. 7, 2018, surrounded by his family.

Donna said she believes her husband wanted to go while his wife could still have an active life.

“I miss him, but he would not be happy if I quit living life to the fullest … In the last year it was like living with a ghost,” she said.

Advances in medical technology are wonderful, and the Coffeens took advantage of those while it made sense.

“But many people prolong things, too. We were right on the edge of hell.”

She might choose the same, given Jon’s shoes to walk in, Donna added softly.

“Our family considers him a hero for doing this.”

After 40 years of marriage, it’s hard not to feel cheated by Parkinson’s, she said, noting Jon’s parents lived into their 90s.

But Donna is learning to live alone. Toby, the “mostly” shih tzu puppy, joined her not long after Jon died and provides a reason for routine, she said, offering the bouncing, barking dog a few Cheerios during the interview.

“We’re still working on manners.”

At 63, Donna said she’ll retire soon. She believes a mission is ahead for her and suspects it’s bringing awareness of end-of-life matters.

“I strongly feel something needs to be done. I just don’t know the next step yet,” she said.

“Maybe it’s time to take another look at the law.”

Complete Article HERE!

Why people choose medically assisted death revealed through conversations with nurses

Without an understanding of the complexities of medically assisted dying, it’s difficult for patients and families to make good decisions.

By and

Since Canada legalized Medical Assistance in Dying (MAiD) in 2016, as of Oct. 31, 2018, more than 6,700 Canadians have chosen medications to end their life.

Canadians who meet eligibility requirements can opt to self-administer or have a clinician administer these medications; the vast majority of people choosing MAiD have had their medications delivered by physicians or nurse practitioners. Canada is the first country to permit nurse practitioners to assess for medically assisted dying eligibility and to provide it.

The precise meaning and implications of MAiD — in particular, who can request medical assistance in dying in Canada — is still evolving through court rulings. Québec’s Supreme Court recently struck down the reasonably foreseeable death requirement under the Criminal Code and the end-of-life requirement under Québec’s Act Respecting End-of-Life Care.

Without the requirement of a reasonably foreseeable death, it is likely that other legal challenges will occur to extend assisted dying to other groups such as those whose sole underlying condition is severe mental illness.

Involvement of nurses

Our research has explored how the nursing profession is regulating the new area of responsibility towards medically assisted dying and how nursing ethics might guide policy and practical implications of nurses’ experiences.

Current legislation guards the right of health-care providers to conscientiously object to participation in MAiD. Nurses who do conscientiously object have a professional obligation to inform their employers of that objection, to report requests for MAiD, and to not abandon their clients. They also must ensure that their choices are based on “informed, reflective choice and are not based on prejudice, fear or convenience.”

The nurses who surround the process of medically assisted dying are an important source of insight into the complex and nuanced conversations our society needs to have about what it is like to choose, or be involved with, this new option at the end of life, and to be involved in supporting patients and their families toward death with compassion.

Researchers are following how the nursing profession is regulating nurses’ involvement in medically assisted dying.

Impoverished stereotypes

Our most recent research involved interviews with 59 nurse practitioners or registered nurses across Canada who accompanied patients and families along the journey of medically assisted dying or who had chosen to conscientiously object. Nurses worked across the spectrum of care in acute, residential and home-care settings.

During our research, and as we followed media stories, we became aware that as with other morally contentious issues, involvement in MAiD has often been discussed in one-dimensional ways: We noted stereotypes of health-care providers and patients who heroically conquer suffering, death and the system by taking control of what might otherwise have been a difficult and prolonged dying. We also observed caricatures of oppositional or religious right-wing persons and institutions who stand in the way of compassion and dignity.

Neither of these perspectives do justice to the complexities of MAiD as it is enacted. Without an understanding of those complexities, it is difficult for patients and families to make good decisions.

Nurses accounts of MAiD

Nurses told us that medically assisted dying is about so much more than the act itself. Medically assisted dying is a conversational journey with patients that lasts weeks or even months.

These discussions patients have over time with skilled and compassionate health-care professionals help to determine whether this is what they really want, or whether there are other options that might relieve their suffering.

Conversations between patients and their families are essential to negotiating a common understanding and moving forward together.

Indeed, evidence has suggested that these conversations, when experienced as meaningful by patients, may help to alleviate the suffering that leads to the request for a medically assisted death. This is particularly true if the suffering has arisen from the sense of isolation.

If and when patients decide to proceed with MAiD, then conversations are required to ensure that all of the organizational details (what, where, when, how) are patient-centred choices and that those who are involved know the part they are to play. After the act of medically assisted dying, it is compassionate conversations that support families in navigating an uncharted bereavement process.

So yes, medically assisted dying is about supporting autonomy, but it is also about understanding that autonomy exists within, and is shaped by, our constellation of relationships. We need to be talking more about the essential nature of what it means to have a good death.

Complex reasons to choose death

MAiD is often spoken of as the definitive intervention that ensures control over the alleviation of suffering. But, we have learned that MAiD can also be chosen as the antidote to a system that fails in compassion or equitable palliative care access.

It may seem the perfect solution for rural and remote patients who want a home death but are unable to find sufficient palliative care in their context.

It may seem the best option for patients who do not want to enter what they perceive to be the dehumanizing environments of residential care.

We heard a story of one man who had overstayed the time allowed on a palliative care unit. His doctor was a conscientious objector to medically assisted dying so each time health professionals planned to transfer him to residential care, the man asked for a medically assisted death. In doing so his stay in palliative care was assured.

We need to ensure that inequitable access or lack of caregiving networks do not become the default reasons for requesting a medically assisted death.

We heard other stories of patients who were not willing to tax their caregivers any longer, particularly if those caregivers sent cues that they were exhausted.

So, while medically assisted dying does promise control over people’s suffering, it can also be used as a form of resistance to a challenging system or depleted support.

We need to plan ways to ensure that inequitable access or lack of caregiving networks do not become the default reasons for requesting a medically assisted death.

Deeply impactful

Nurses emphasized how important it is to have preparatory conversations repeatedly. Organizing an assisted death is labour-intensive for all involved; it requires thoughtful and detailed planning within the care system and among families and support networks.

Often the first time that patients and families hear a detailed explanation of the process is when the nurse or the physician first assesses eligibility. Nurses said it is not uncommon for patients to experience uncertainty, to vacillate in their decision around an assisted death, or to experience fear at the moment of death.

It is tough to talk about your uncertainty when so many have invested time and energy into planning your death. At the time of assisted death, nurses and physicians go to extraordinary lengths to ensure a “good death” by normalizing the process, fulfilling patient wishes and providing exemplary clinical care.

Despite all of this, the death is often deeply impactful because it is so different than the death we have known where people gradually fade away. Persons receiving medically assisted death are fully there one minute, and gone the next.

Within minutes they go from talking, to unconscious, to a grey pallour that signifies death, and this “greying” affects even seasoned health-care providers. The death can provoke an array of overwhelming emotions in health-care providers and families alike, both positive and negative.

With the changing landscape of medically assisted dying in Canada, the need for reflective conversations becomes ever more urgent. We need to better understand how medically assisted dying changes the nature of death to which we have become accustomed and how those changes impact all those involved.

Complete Article HERE!

Music and spirituality at the end of life

By Noah Potvin

Music and spirituality are two mediums frequently – almost ubiquitously – partnered in cultures around the world with the intention of enhancing engagement with the divine. Spiritual practices are infused with music to intensify the transpersonal components of worship, meditation, and ritual. Correspondingly, musical encounters are infused with spiritually-based beliefs and practices to provide individuals connections with themselves and others in uniquely powerful ways.

For many, this easy, reciprocal flow from music to spirituality may come as no surprise: both are malleable mediums responsive to the people engaging with them and the settings in which they are engaged. For instance, Amazing Grace performed at a funeral in a church with a large congregation might be led with a louder volume, increased pressure, and heightened resonance to match the congregation’s energy as they worship through song. In contrast, Amazing Grace performed bedside in a hospital room with a patient and caregivers might embody quieter, more prayerful qualities intending to comfortingly hold the patient in their depleted physical state and engender intimate musical sharing.

As music and spirituality intertwine, their boundaries become increasingly fluid to the point that distinguishing between one and the other becomes trivial. To be spiritual is to be musical, and to be musical is to be spiritual.

A similar malleability is also present in individuals’ health journeys. Objective characteristics of health – such as symptom acuity/chronicity; treatment dosage and frequency; and curative versus palliative outcomes – are subjectively experienced in response to the individual’s values, morals, and disease trajectory. For instance, one person’s 6 out of 10 pain is their daily baseline and thus easily managed, while another’s 6 out of 10 pain is breakthrough and requires treatment. Similarly, one person may prioritize the improved quality of life offered by palliative care while another may prioritize the potential increased longevity offered by curative treatments.

These dynamic, emergent qualities of music, spirituality, and health are a result of each being culturally situated phenomena. That is, the manner in which music, spirituality, and health are conceptualized and engaged with is directly informed by the distinct cultures in which they manifest. This leads to a fraught but important question: If music, spirituality, and health are each unto themselves complex phenomena derived from cultural factors, how do all three interact when they intersect in a singular encounter?

Board-certified music therapists frequently navigate this encounter in hospice. Hospice is a philosophy of care that prioritizes quality of life with six months or less to live, putting critical health issues at the forefront with limited time to facilitate resolution and closure. At such a juncture, spirituality can be a critical resource for patients and families who are simultaneously managing in the moment and preparing for the future. The type of resource spirituality can become (e.g., comfort in ritual, strength from scripture or peace through prayer/meditation/worship) is determined by the specific faith traditions of the patient – not just an identified denomination but the explicit experiences patients engaged in as part of their spiritual practice.

Music therapists assess those faith traditions for each patient and, coupled with a similar assessment of patients’ music traditions, craft music experiences that help patients become aware of and engage with their spiritually-based resources. These culturally informed clinical music processes interweave music, spirituality, and health in a way that affords patients agency in dictating the circumstances of their death. Yet, contemporary discussions in the music therapy literature have tended to frame spirituality from such a broad and generic stance that it becomes difficult for music therapists to locate spiritually-based resources in patients.

To address this limitation, my co-author (Cathleen Flynn) and I recently authored a paper that explored a specific culturally informed music, spiritual, and health intersection: music therapy for Christian patients and caregivers during imminent death. Using this intersection as a foundation, we developed a theoretical model positioning music therapy as a psychospiritual ministry providing patients and caregivers access to a faith-based resource – the Holy Spirit – that assists with transcendence as end-of-life transitions neared.

Transcendence, a difficult concept to lock down, is a movement beyond the typical, readily accessible experiences that define our day-to-day to experience the self and other in new ways that push beyond our known thresholds. For Christian patients who are imminently dying, that transcendence is vertical, an upward trajectory that moves them closer to an integration with the divine as they move beyond the corporeal. For Christian caregivers, that transcendence is horizontal, an outward trajectory that moves them closer to mortal support structures that assist in their transition to bereavement. The Holy Spirit, an intermediary between the mortal and divine, is the faith-based avenue through which these different but concomitant transcendences occur. From this vantage point, the music therapist assumes a ministerial role, constructing dynamic music experiences that facilitate interactions with the Holy Spirit promoting patient and caregiver transcendence.

Such explicit framing is ethically fraught. First, we do not argue that adopting a Christian lens is the “only” way or the “correct” way for music therapy to be practiced in hospice; rather, we introduce this theoretical model as a broad template for conducting spiritual assessments of patients from diverse traditions and beliefs. Second, this is a person-centered model wherein any implementation of Christian theology into music therapy processes is cued by the patient rather than introduced by the music therapist; this is an essential aspect as it avoids the perception that music therapists might leverage privilege to proselytize to patients. Third, there are numerous avenues for ethical and effective clinical support of Christian patients and families at the end of life, and this model is not meant to be a linear prescription; rather, it is an exploratory avenue that opens a multitude of additional doorways for providing psychospiritual care.

As the baby boomer generation continues to advance in age, it will be increasingly important that healthcare systems are well positioned to provide comprehensive end-of-life care addressing mind, body, and spirit as equal partners in whole-person health. Music and spirituality continue to be important day-to-day aspects for many people, and exploring diverse permutations of music, spirituality, and health intersections can be an important contribution to this pursuit of the good death.

Complete Article HERE!

New program provides mobile end-of-life support to people in poverty

The new Palliative Outreach Resource Team (PORT) brings compassionate medical care and support to people living in poverty at end-of-life. Dr. Fraser Black,Island Medical Program’s associate dean of student affairs, is a team physician.

Death may be the great equalizer but the availability of good end-of-life care is rarely equitable. Now, a new mobile palliative care program designed to address that inequity is providing care and dignity to people with life-limiting illnesses who are homeless and living in poverty in Victoria. 

The Palliative Outreach Resource Team (PORT) is a collaboration of the University of Victoria, Island Health, Victoria Cool Aid and Victoria Hospice. PORT acts as a bridge between people with serious illness and their caregivers, palliative care, and other health and social support systems. 

The program is built upon lessons learned from a three-year study led by UVic palliative care researcher Kelli Stajduhar, lead investigator of the Equity in Palliative Approaches to Care program with the Institute on Aging & Lifelong Health and the School of Nursing. The study followed 25 people living homeless or barely housed while struggling with life-threatening medical conditions. The 2018 report Too little, too late: How we fail vulnerable Canadians as they die and what to do about it, found that homeless and barely housed people have to navigate many systems—health care, housing, social care—and that as their health declines, their ability to access these systems also declines. The big takeaway: despite a terminal diagnosis of cancer, heart failure or lung disease, those who were able to access palliative care actually experienced an improvement in quality of life. 

For PORT’s first year, the clinical team will be funded by Island Health and Saint Elizabeth Health Community Enterprise, a social enterprise with a commitment to end-of-life care for marginalized communities. Mirroring similar models in Toronto and Calgary, people can self-refer or be referred by their caregivers to a palliative care nurse and a physician who provide whole person care, manage the pain and symptoms related to life-limiting illness, support chosen family and caregivers, and provide grief and bereavement support. Chosen family and caregivers in this population include “street family” and shelter, housing, harm reduction, and peer and support workers from inner-city community organizations who are doing the bulk of end-of-life care for people living in poverty. 

The Vancouver Foundation is funding the UVic-led evaluation of the program, as well as the development of initiatives to increase access to and quality of palliative care in the inner city. The PORT team, which began service in July, has supported three deaths and is currently supporting seven people who are dying.

“For almost a decade, providers in our community have cobbled together resources to meet the needs of our clients who are living with unmet palliative needs,” says Grey Showler, director of health and support services at Cool Aid. “We are thrilled to see PORT come to life.”

“Over the next year, we will be implementing this model of palliative care in collaboration with organizations and people who have expertise in care and support for homeless and vulnerably housed people at end-of-life including street families,” says Jill Gerke, director of the palliative and end-of-life care program with Island Health. “We are using research and promising practices to inform the development of this model adapted to our community that bridges existing support and services.”

“Palliative care isn’t a ‘thing’ or a ‘place’ but an approach that focuses on whole-person care for the person, their family and community. This approach necessitates a community response where everyone sees their responsibility and their part in care for dying people,” says Stajduhar.

Complete Article HERE!