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!

The art of doing makeup on a dead body

Applying makeup on a dead person is not much different than on a living person, one funeral director says.

A funeral director says that applying makeup on a body is not much different than on a living person.

By

Evie Vargas had always been drawn to death. That sounds morbid, or possibly extremely goth, but her interest wasn’t in the afterlife nor the aesthetics. Vargas wanted to pursue a profession rooted in service, and entering the death care industry was a calling — an inexplicable calling that, once she began work, seemed like destiny.

Throughout high school, Vargas considered attending mortuary science school, but worried she wouldn’t be able to handle the sight of a dead body. Still, she knew that a two-year program could lead to an associate’s degree, an apprenticeship, and eventually a mortician job.

To gauge her nerves, Vargas decided to go to a place that would expose her to death firsthand: a funeral home in Illinois.

There, she shadowed an embalmer, who offered her a part-time job after their first session. “He said he saw something in me,” Vargas says, still amazed at how prescient the offer turned out to be. “I didn’t have a license to embalm so I did makeup, dress, and casket.” She’s worked there since graduating from mortuary school.

Even after eight years in the industry, makeup and hair is still a special part of her job, Vargas says. As a funeral director, she does “basically everything” — administrative work, service preparation, meeting with family members, embalming bodies. But she thinks mortuary makeup work is uniquely intimate and significant.

Funeral director Amber Carvaly sets up for a viewing.

Makeup plays a starring role at many funeral services — the last time family members will physically see their loved ones before the casket is closed. These services are usually done by a certified embalmer, a person tasked with cleaning and preparing the body, who takes on the burden of replicating a person’s likeness and essence. Makeup artists — whether embalmers, funeral directors, or freelance workers — find meaning in this ritualistic work of dressing a body, mulling over the details of its presentation, and receiving input from the family. It can help loved ones grieve, artists say, in remembering a person at their best.

Embalming a body and applying eyeshadow seem to demand different skills, but the work contributes to the body’s final presentation. Embalming is typically the first step; fluids are injected into a body during the process to slow its decomposition for the funeral ceremony.

According to the Funeral Consumers Alliance, the process could give the body a more “life-like” appearance, although it isn’t always required. Amber Carvaly, a funeral director at Undertaking LA in California, doesn’t think embalming is necessary for most natural deaths, although it might firm up the skin more. She says that applying makeup on a body isn’t drastically different than working on a living person.

Carvaly has an array of products in her makeup kit — typically thicker theatrical makeup for discoloration or jaundiced bodies — but drugstore brands like Maybelline Cosmetics work fine. There are little techniques and tricks she’s picked up, for example, in applying lipstick on a dead person’s lips, which are much less firm.

She uses a pigmented gloss or mixes a dry lipstick to paint the color on. Vargas prefers using an airbrush kit for a more natural look, since it provides full coverage and is easier than applying foundation.

Carvaly doesn’t work with bodies as much as she likes to anymore, ever since cremation overtook burials as the preferred means of after-life care in 2015. While there is no proven correlation between price and popularity, cremation is cheaper than a burial. According to the National Funeral Directors Association (NFDA), the average burial and viewing costs $8,508, while the average cremation and viewing comes out to $6,260.

Post-death makeup is only a fraction of the cost for burials — an average of $250 per funeral, according to the NFDA — but the added costs aren’t worth it for some, Carvaly says. Many families struggle emotionally and logistically in the aftermath of a death, she adds. The logistics that go into the burial ceremony, especially dress and makeup, are often the last things on their minds.

A common complaint from families is that a body doesn’t look like their living relative. The embalmer might have parted their hair differently or used an unfamiliar lipstick color. Carvaly points out that family members can do makeup on their loved ones before the body is sent to a home. But if they’re uncomfortable with that, she encourages them to assist the embalmer with the makeup and presentation.

“Doing makeup with the family present is extremely rewarding,” she says, adding that family members’ input makes it much easier to capture the aesthetic essence of a person. It’s helpful for the families as well: “When you’re grieving, having a physical or artistic activity can help walk you through it.”

Years before Carvaly went to mortuary school in Los Angeles, she worked as a cosmetologist on film sets. She’s changed careers multiple times — from makeup to nonprofit work to the death care industry. Like Vargas, Carvaly is dedicated to the service aspect of her job, and she sees makeup as a physical manifestation of that service.

In her seven years of work, Carvaly’s found that most people are uncomfortable in the presence of a dead body, even in preparation for the burial. “I’m more than happy to do makeup for a family if this is something they don’t think they have the strength to do,” she says. “But I want them to know that they have options.”

On rare occasions, she brings along makeup or hair tools for families to touch up their loved ones at the service. She once worked on a woman with blonde, beehive-style hair that she struggled to recreate. At the funeral, Carvaly suggested that the woman’s daughters help her touch it up — a request they were initially shocked by.

“Allowing people to be a part of the funeral is important,” Carvaly says. “Keeping that veil of magic up prevents regular people from doing something very valuable.” Families shouldn’t hesitate to ask a funeral home if they can do their loved ones’ hair and makeup, which could reduce costs, she says.

Shifting social norms and new funeral practices, like eco-friendly burial options, have driven homes to find ways to increase profits — often at the expense of families, who are missing out on an opportunity to properly grieve, Carvaly explains.

“There is no law that prohibits people from coming into a home and requesting that they do makeup on the deceased,” she wrote in an e-mail. And while Carvaly feels that her job is a calling, the daily human interaction can be taxing. The most difficult part of being a funeral director, she says, is explaining why people have to pay for certain services that the home offers.

It’s what upsets people the most, but homes also have to pay for overhead expenses — the indirect costs of operating a business. Carvaly’s funeral home, Undertaking LA, opts to rent time and space from another crematory.

Carvaly’s funeral home co-founder, Caitlin Doughty, has found unprecedented success on YouTube under the account Ask A Mortician, a series where Doughty takes questions about her work and about death.

Demystifying death is a big part of Undertaking LA’s mission — to put the dying person and their family back in control of the dying process and the care of the body. It’s a liberal “death positive” approach, one that Carvaly likens to “breaking down the walls and windows” of a rigid centuries-old industry. Vargas feels similarly, and tries to destigmatize the death industry on her YouTube channel.

After a death occurs, families often immediately send the body to a funeral home and don’t interact with their loved ones until the ceremony. And sometimes, they’re taken aback by the body’s made up appearance. Reclaiming the makeup process can be a cathartic first step, as an unexpected outlet for grief, and eventually acceptance of the death itself.

Complete Article HERE!

Some Blunt Advice About Your Death

Author and end-of-life educator Sallie Tisdale gets real about death and dying.

“We’re beginners at this. Everything you know falls away.”

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Sallie Tisdale has advice for all of us future corpses. And that is to talk bluntly about death—especially our own.

Tisdale has worked in palliative care and is an end-of-life educator and Buddhist practitioner who holds workshops on death preparation. Her recent book, Advice for Future Corpses (and Those Who Love Them): A Practical Perspective on Death and Dying, was named one of the New York Times Top Books of 2018. In it, Tisdale explains the realities that come with dying and the importance of normalizing conversations about death.

Ideas of impermanence and rebirth after death are tenets of Buddhism, yet Tisdale finds they don’t make the prospect of dying easier to grasp. At 62, she still finds it difficult to imagine herself as a future corpse. When death hits close to home, everything feels clumsy and uncertain, she said. “We’re beginners at this. Everything you know falls away.”

Rather than planning too meticulously for  a “good death,” Tisdale suggests adopting a “mastery of death”—just coming to peace with the fact that we all must die eventually—because we can’t know how our death will go.

Still, that doesn’t mean you shouldn’t prepare. I spoke with Tisdale, and here’s what she suggested we can do.

Sydney Worth: How has your experience with end-of-life care affected the kind of advice you give in your workshops?

Sallie Tisdale: A lot of what I do as a nurse is to normalize [death]. One of the things I want people to consider if they’re going to be with someone who’s dying, is what do you bring into that room. Are you bringing ideas of what you think is a good death that might start to impact how you care for a person? A good death—most people think that means peaceful, no pain, and at home with family. That’s not realistic for a lot of people. I want people to get in touch with their own state and realize that we’re all carrying around some kind of idea about death.

Worth: Where do you think our avoidance of death comes from?

Tisdale: We in the modern West are in a unique position. In less than 100 years, [death has] disappeared from the home in the U.S. That change happened because families became more mobile and scattered. It’s the current generations that have not been exposed to it very much.

Worth: So, this lack of exposure is a result of modernization?

Tisdale: We have a fantasy that we’re going to die in our home like we did 150 years ago, but that world doesn’t exist anymore. [Death] may not look like the fantasy we’re still carrying around. A body gradually loses all of its integrity as we die. We need to say you might have diarrhea at 3 in the morning. How is that going to be handled? And how does that fit into your fantasy? I like this idea of a mastery of death meaning that I am at peace in myself. My dignity and self-worth have nothing to do with what happens to my body.

Worth: Can we start mastering death now?

Tisdale: Notice I didn’t say “master” death, because we don’t get to stop it. Mastery of death would mean acceptance. It’s this old Zen saying, “We love the china bowl because it will break.” We love the fragile. And that’s why we love each other—because we only have so much time. We see the fragility of change.

Worth: What are some things people forget to do before they die?

Tisdale: An awful lot of people never tell their friends or family or doctor what kind of death they want to have. There’s nothing more difficult than being handed this awkward object of a loved one’s corpse and being told what to do with it in a moment when you’re in emotional distress. Why would we consign our family to make that decision instead of being willing to talk about it?

Worth: When should we start preparing for death, then?

Tisdale: Today.

Complete Article HERE!