How COVID-19 Is Changing End-of-Life Care

Some hospice agencies have been reluctant to go into homes lately

Entrepreneur Mika Newton with his wife Nuray, his daughter Ava and his mom, Raija

By Sherri Snelling

It was a decision Mika Newton had been dreading, but he knew he needed to stop seeing his mom.

For nearly three years, Newton, an entrepreneur in cancer care advocacy and patient support with his startup xCures, had been taking care of his 79-year-old mother, Raija, who lives near him in Oakland, Calif. When his father passed away, Newton took over caregiving duties for Raija, who suffers from mid-stage dementia and was recently diagnosed with terminal lymphoma. As the coronavirus pandemic exploded in March, Newton’s wife, Nuray, a nurse at Concord Medical Center at John Muir Health, was treating the sudden influx of COVID-19 patients. That meant a halt in Newton’s daily visits to his mom to protect her from any virus transmission.

“I wasn’t able to see her for eight weeks which was hard. But we spoke on the phone every day and I had peace of mind she wouldn’t die alone, because we have full-time home care and hospice for her,” said Newton.

Hospice in the Time of Coronavirus

According to a 2019 National Hospice and Palliative Care Organization report, nearly 1.5 million Medicare beneficiaries currently receive hospice care, defined as compassionate care that replaces treatment for patients who have a terminal condition with less than six months of life expectancy.

However, a National Association for Home Care & Hospice (NAHC) survey conducted in May 2020 found that 95% of hospice agencies have had existing patients refuse visits due to fears of contracting the virus  And while two-thirds of hospice agencies are taking COVID-positive patients, they have lost overall clientele, forcing them to reduce direct-care staff. Some staff concerned about their own health and their families’ health are reluctant or even refusing to help any COVID-confirmed patients.

“The agency said they couldn’t risk staff getting the virus and having to be quarantined and out of commission. That was a blow.”

Rebecca Bryan, a journalist for Agence France-Presse based in Los Angeles, realized that hospice care can be a blessing when her father spent eight months in hospice in 2004. But things were different when her 89-year-old mother, Margie, needed hospice before passing away during the pandemic.

“Hospice is a wonderful program, but I never realized how hands on my mom must have been for my dad since I was only home the last month of his life,” said Bryan.

When her mother was recently diagnosed with late stage leukemia and given three to six months to live, Bryan spent two months in Dallas caring for her.

“Mom made a decision not to proceed with blood transfusions, so we secured hospice care for her at home,” Bryan said. But while the small agency in Dallas helped deliver a hospital bed and did an initial inspection, it refused to send any staff to Bryan’s mom’s home when she showed an elevated temperature.

“She had just tested negative for COVID in the hospital and because of her cancer, she had not been outside. She was only at home alone but the agency said they couldn’t risk staff getting the virus and having to be quarantined and out of commission. That was a blow,.” said Bryan.

Bryan said she and her sister learned how to turn her mom to avoid bed sores, put on adult diapers, administer morphine and other paraprofessional caregiving tasks without any instruction.

“That was hard, I wish we had more guidance, because you are constantly asking yourself, ‘Am I doing this right?’” said Bryan.

Hospice Telehealth

Robin Fiorelli, senior director of bereavement and volunteer services for VITAS Healthcare, a provider of end-of-life care, believes in-person hospice care can never really be replaced but that telehealth has become a solution to some hospice challenges during COVID-19.

“We can conduct a virtual tour of a home hospice patient’s living area so our nurses can assess whether a hospital bed, walker, patient lift or bedside commode should be delivered to the home,” said Fiorelli.

“COVID has magnified the strain on family caregivers, there is no relief.”

She also added that face-to-face conversations about goals of care are being replaced by video chats in which physicians, patients and family members explore care-related wishes and document difficult-but-necessary decisions about ventilation, do-not-resuscitate orders and comfort-focused care. This proves especially valuable for family members who live far away from the patient and who can be part of those conversations remotely.

The Centers for Medicare and Medicaid Services (CMS) has waived certain requirements for hospice care at home due to the pandemic, such as allowing health care professionals to recertify patients for another six months of hospice care via a telehospice visit, foregoing the mandatory two-week supervisory visit for home health aides and waiving the mandatory hospice volunteer hours, which normally have to meet 5% of total hospice hours delivered.

“COVID has magnified the strain on family caregivers. There is no relief,” said Vic Mazmanian, a dementia care expert who operates Mind Heart Soul Ministry to train faith-based organizations, provide support group services for senior centers and memory care communities and work with hospice chaplains.

“Not being able to take a loved one to adult day care or a senior center so you can get a break is accelerating the stress and impacting the health of caregivers,” said Mazmanian. “The 24/7 nature of hospice care, with most, if not all, the work being done by the family member without help from professionals or volunteers, is being derailed by the pandemic with many caregivers feeling increased anxiety, depression and loneliness.”

From Grief to Gratitude

Mika Newton feels he’s been lucky. In addition to the daily home care for his mom, hospice workers come three times a week. But now that he has resumed his visits, he realizes the stress of not seeing her regularly like before has taken its toll on both of them.

“She’ll ask me why I’m wearing a mask and get angry about it because she doesn’t remember what is happening in the outside world,” said Newton. “Or she’ll forget she has cancer and I have to remind her. I realized the cancer may be killing her, but the dementia is slowly taking her soul.”  

Rebecca Bryan advises family caregivers facing hospice for a loved one to ask a lot of questions such as, “If my loved one tests positive for COVID or has one of the virus symptoms, does that affect your ability to come care for them?”

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“In the beginning of the pandemic, many of our patients and their families did not want our professional staff coming into the home. But that has eased up more recently,” said Dr. Kai Romero, chief medical officer for Hospice By the Bay, affiliated with UCSF Health in San Francisco. “We’re proud that throughout this entire experience we have continued to provide needed end-of-life care to everyone on our service and we’ve kept our direct care workers safe with strict testing, PPE and other guidelines. Not one of our staff has tested positive for COVID-19, even though we have had twenty-seven patients who have had the virus.”

COVID-19 Sparks ‘The Talk’ For Families

When Next Avenue asked readers on our Facebook page how the pandemic has affected care for their loved ones, one shared that she recently lost her mom after home hospice care and worked hard to make sure COVID-19 wouldn’t be part of the end of her life.

“Eighty percent of people don’t make a will or have the family conversation about long-term care because they are afraid if they do, they will die,” said Scott Smith, author of “When Someone Dies — The Practical Guide to the Logistics of Death.” Smith, who is CEO of Viant Capital and sits on a hospice board, advises families to have “The Thanksgiving Talk” where older family members share not just their wishes but where all the important legal and financial documentation can be found. 

Mika Newton said losing his dad galvanized him and his brother, Timo, to get all his mom’s end-of-life plans settled now, while she’s still alive. “My mom was able to participate in the conversation. which I’m really grateful for. And my dad did a great job making sure she would be OK financially, so it wasn’t a huge burden. I’m glad we went the route with hospice, I feel at peace with it.”

Complete Article HERE!

The Newly Legal Process for Turning Human Corpses to Soil

Reusable eight-by-four-foot steel cylinders, packed with wood chips, straw, and alfalfa, present an eco-friendly alternative to traditional burial

By Corinne Purtill

There’s an empty warehouse 20 miles south of Seattle that, if everything goes as planned, will soon be full of dead people.

The facility belongs to Recompose, the first U.S. company to compost human bodies indoors, through a process known officially as natural organic reduction. Washington state became the first — and so far, only — U.S. state to legalize the practice in May 2019. Recompose opens in November. It’s designed to hold the bodies of up to 10 recently deceased people at a time, each of them quietly decomposing into a loamy, nutritious soil, just as their previous owners wanted.

At the most basic level, decomposition is not a new technology; microbes have been doing it extremely well for just about as long as organic matter has existed. But it’s a part of death that Western funeral practices have traditionally gone to great lengths to evade: Embalming a corpse in chemicals with the goal of preserving a “natural” (that is, not dead) look; hawking expensive caskets that claim to seal out nature’s corrupting forces.

Recompose takes the opposite approach.

Against an attractive millennial pink background, the company’s website plainly explains the eco-friendly setting in which clients will decay. Instead of in a single-use casket, bodies rest temporarily in a reusable eight-by-four-foot steel cylinder, packed snugly in a cocoon of wood chips, straw, and alfalfa. For 30 days the dead human and living microbes stay in the vessel together, lying alongside fellow Recomposers in the warehouse’s hexagonal wooden frame, while the microorganisms slowly break down the corpse. At the end, after a brief turn in a curing bin to cool and dry out excess moisture, what once was a human body is now about a cubic yard of fertile, nutrient-rich soil, which can be returned to loved ones or scattered according to the decedent’ wishes. (The company will deliver all or part of the soil free of charge to Bells Mountain, a protected wilderness in southern Washington.) The service costs $5,500 — more than a typical cremation and service costs in the U.S., but about half the cost of burial. Some 275 people have already signed up for the service since reservations opened a month ago, said customer and communications manager Anna Swenson.

“There are a lot of signs and signals that are somewhat apocalyptic that kind of turn you back to your mortality.”

Why hack death? Cremation releases more than 500,000 tons of greenhouse gases annually in the U.S. alone, along with significant levels of mercury emissions. Traditional burial shoves truckfuls worth of metal, concrete, wood, and formaldehyde beneath the ground each year. Cities around the world are running out of traditional cemetery space, and preserving any unmolested open space is hard, even if you’re not trying to get permission to plant corpses in it. Human composting and its kindred green death technologies distill the body from a large, unwieldy, decomposition-prone state to one that is smaller, shelf-stable, and portable, with negligible environmental cost along the way.

There are existential reasons as well. As a pandemic rages and wildfires burn and a general feeling of doom pervades the air, “there are a lot of signs and signals that are somewhat apocalyptic that kind of turn you back to your mortality,” said Jeff Jorgenson, who owns green funeral homes in Seattle and Los Angeles.

“We look at what we’re doing and how disconnected we are from the earth and realizing that we’ve created this mess. We’ve allowed this to happen. And I think that informs decisions and perspectives on death.”

Recompose founder and CEO Katrina Spade was raised in a family of doctors “where it was fairly normal to talk about death and dying at the dinner table,” as she explained in a 2016 TED Talk. That frank approach to life and its end followed her to architecture school, where she became fascinated by a particular design question: How to dispose of her own physical body when she was no longer living in it, without — as she put it — “destroy[ing] the possibility of giving back after we die.”

She admired the example of green cemeteries, where nonembalmed bodies are wrapped in biodegradable materials and buried in a grave about three or four feet deep in which, over the course of about two years, tissues decompose into matter that nourishes the surrounding soil. (Bones can take up to 20 years more to fully disintegrate, according to the Green Burial Council.)

Green cemeteries are lovely places, with trees and plants growing freely without the austere manicuring of a traditional cemetery. There just aren’t very many of them. Only a few hundred of the thousands of cemeteries in the U.S. offer any green burial option, including many Jewish and Muslim cemeteries, whose burial practices traditionally forgo embalming and nonbiodegradable caskets. With composting, the body can go through the same process as it would beneath the soil of a green cemetery, even if there’s no open space for miles.

There’s also the question of one’s final resting place. A body placed in a green cemetery becomes, effectively, a part of that particular expanse of earth. One of the benefits of cremation is that the deceased or their survivors can dispose of the resulting “ashes” however they see fit: scattered in a meaningful spot, divided amongst children, even shot out of a cannon if that feels most appropriate.

Wouldn’t it be nice, Spade thought, to rot closer to home, to turn back into something that feeds the earth instead of takes from it, and to have a say in where the soil made from you goes?

Agriculture has been using natural organic reduction for decades to dispose of dead cows and other livestock on farms. For her master’s thesis in architecture, Spade laid out the idea for a facility where humans could be composted this way, indoors, in a setting that would be both dignified and sanitary.

Upon graduation, she began in earnest to make the business a reality. In 2018 she partnered with the Washington State University Soil Science Department for a study using six donor bodies to confirm that soil produced from human composting would be pathogen-free. The heat produced by the composting process kills almost all pathogens; the only people who will not be eligible for composting at Recompose are those who die with prion conditions, like Creutzfeldt–Jakob (“mad cow”) disease, as the proteins that cause those conditions can remain toxic in soil for years.

Recompose’s vessel is not the only relatively new advance in the disposal of human corpses. The law that made Washington the first (and so far only) state in the U.S. to legalize human composting also explicitly legalized alkaline hydrolysis, also known as chemical cremation.

The novelty of Recompose got more attention, as alkaline hydrolysis was already legal in more than a dozen U.S. states. But because the technology fits so easily into existing crematoriums, chemical cremation, which was also originally developed to dispose of dead cattle, may be the more accessible option at the moment for people without access to a green cemetery or reduction facility.

More than half of the people who die in the U.S. each year are cremated, a process that emits more than 500 estimated pounds of carbon dioxide per body. In alkaline hydrolysis, a body is placed inside a vessel containing a solution of water and the caustic base potassium hydroxide that’s then heated and pressurized. Over about three hours, the pressurized liquid dissolves the body’s soft tissues as fire does in a traditional crematorium. Because there’s no combustion, there are also no greenhouse gas emissions.

The end result of both processes is the same: Bones that are then pulverized into what are typically referred to as the “ashes” of the deceased. Traditional cremains are the color of gray sand. The remains of a chemically cremated body are the pure white of seashells.

Green death tech also expands to engineered materials that line coffins and wrap corpses, and that sell themselves as accelerating the conversion of the former, resource-consuming you into matter that feeds other life forms, the ideological opposite of traditional burial marketing.

“People want their deaths to mean something. They want their bodies to be useful in some way.”

These include the offerings of designer Jae Rhim Lee’s company Coeio, which sells burial garments laced with a mixture of mushrooms and other organic matter that claim to speed decomposition and break down the toxic compounds the body releases. (According to his wishes, actor Luke Perry was buried in one after his 2019 death from a stroke at age 52.) The Italian designers Anna Citelli and Raoul Bretzel created Capsula Mundi, a biodegradable, egg-shaped urn whose creators say should be buried in the ground, with a tree as a grave marker.

New technologies for disposing of bodies allow new ways of mourning the dead. Even before Covid-19 disrupted the ability to gather in mourning, it was a challenge to convene dispersed loved ones and choose a specific place to lay to rest a person who lived their life in multiple cities or countries. The share of people who identify with organized religion has fallen. Secular services that fill the need for mourning rituals have grown in their place.

Recompose is also a funeral home, and eventually, the business hopes to move to a facility large enough to allow for memorial services where loved ones can participate in the process of placing the body in the vessel. The company also plans to offer franchising opportunities in a few years. While patents are pending on the specific design of their vessels, composting itself is not a proprietary idea. In the future, rather than calling the church to organize a service, one may call the closest organic reduction facility.

“People want their deaths to mean something. They want their bodies to be useful in some way,” said Nora Menkin, executive director of the People’s Memorial Association, a Seattle-based nonprofit cooperative funeral home. Over the last six months, there’s been a jump in calls to the organization from people contemplating their mortality while riding out the pandemic at home. They want options, she said, so that “your last act on earth isn’t polluting it.”

The way we dispose of bodies says more about how we live. Embalming became popular in the Civil War, the first episode in U.S. history where people died en masse far from their homes and needed to be transported for burial. Cremation rates rose as the country became more mobile, and scattered families could not be convened fast enough for a burial. Today, more people seek options that don’t contribute to the environmental destruction we see around us, that allows our earthly remains to be shared by the people we loved or disposed of altogether. To embrace our final obligation, which is to return to the earth the substance that let us be ourselves.

Complete Article HERE!

Race, education, gender may influence some divergent views about death

Danvers resident John Barbieri looks over a collage of photos of his late wife, Ann “Peachie” Barbieri. They were married for more than 60 years.

By Mark Arsenault and Liz Kowalczyk

A Boston Globe-Suffolk University poll late last year shows that, for the most part, Massachusetts residents share widespread agreement on issues related to the difficult subject of death.

They say society would be better off if end-of-life issues were discussed more openly and believe terminally ill patients should have more options to choose when and how to die. A sizable majority say they would prefer to die at home, and many men and women have first-hand experience with hospice, according to the poll of some 500 residents across the state.

But some major — and subtle — differences emerged along racial, education, and gender lines, a sign that physicians must address cultural attitudes and life experiences, not just medical options, to reduce inequities in end-stage medical care. The poll showed differences in the types of diseases people most dread, how religion affects views on death, and when to stop aggressive treatment at the end of life.

For example, the survey found that Black and Hispanic people are more likely than white and Asian people to say religion and spiritual beliefs guide their medical end-of-life wishes. And it found that Black people more often want to continue treatment for an incurable, debilitating disease than other groups, likely reflecting longstanding fears of under-treatment due to a history of discrimination.

The poll also found women were more likely than men to believe greater public discussion about death is a good thing and have more religious and spiritual beliefs guiding their medical decisions at the end of life. Women were also somewhat more likely to believe in the afterlife.

Differences among groups also emerged on what life-threatening disease they most feared. Black and Hispanic people identified cancer above all, while white and Asian respondents identified Alzheimer’s and dementia as the condition they most dreaded. Similar differences were found along educational lines.

Complete Article HERE!

How to survive a pandemic

— by a gay man who’s lived through one before

By

From the number of complaints I’m hearing of pandemic fatigue and the widespread resistance to simple precautionary measures such as wearing a mask at the grocery store, it’s clear to me that many people don’t fully appreciate what the gay community has been dealing with for the past 40 years and don’t understand how we survived the AIDS epidemic.

At the risk of over-sharing, here’s a snapshot of what it was like to have come of age in the midst of a sexually transmitted and deadly virus.

We learned how to protect ourselves and one another by practising safer sex. We started using condoms, for which gay men had previously had no use.

And we did so not just for a few short months, but for decades.

Over the years I’ve had boyfriends and lovers and one-night-stands with men whose names I’ve long since forgotten, and I used condoms with all of them.

I had casual sex with strangers in bathhouses and in the backrooms of leather bars and I used condoms. I had sex in parks and parked cars and I used condoms.

I had sex when I was sober and I had sex when I was too drunk to stand up or even see straight, and nonetheless I somehow managed to use condoms.

I had sex with men who warned me that they were HIV-positive and with men who assured me that they were HIV-negative, and in either case I used condoms. I worked on the assumption that anyone and everyone might be infected – myself included – and I used condoms.

“We did this because we knew that unprotected sex could be fatal”

I had sex with the same man hundreds of times over the course of a 20-year relationship and we used condoms every single time, except for a very brief attempt at monogamy after 15 long years of endlessly discussing trust and testing and accountability, after which we decided that it would be easier and less stressful not to talk about it anymore and to just go back to using the damn condoms.

Occasionally condoms broke or came off, or I slipped up and put myself at risk, after which I lived in a state of anxiety for up to six months waiting for reliable antibody test results.

Then I renewed my promise to myself to be more careful, to do better.

We did this because we knew that unprotected sex could be fatal. We did this as we mourned and buried friends and co-workers and ex-lovers and attended more funerals than any young person should ever have to.

Whenever I needed a reminder of the importance of safer sex, all I had to do was look at the photograph that my older lover kept taped to his fridge, of a dozen of his closest friends at a birthday party in the early ‘80s. All of them so young, all of them so handsome. All of them dead by the time we met.

An entire generation of vibrant, talented men cut down in their prime, caught off guard by an emerging disease, wiped out by an invisible enemy.

‘We educated ourselves and the community’

We suffered from survivor guilt, wondering how and why we survived when so many had perished. We experienced anticipatory grief, wondering which of us would be next. At times we were nearly paralyzed with fear. Still we soldiered on.

We transformed our fear and grief into action by volunteering and fundraising. For years on end, every social event and drag show and gay bingo night involved selling raffle tickets and passing a bucket to scrape together donations.

We delivered meals to people too weak to cook for themselves and we visited the dying in hospices and palliative care wards and we stitched memorial quilts to commemorate those we’d lost.

We organized an annual AIDS Walk to support people living with HIV and we marched in the annual Pride Parade to remind ourselves and the world that we were still here and that we deserved the same rights as everyone else.

We educated ourselves and the community. My colleagues and I attended national and international AIDS conferences and created educational materials and conducted sexual health workshops. I coordinated a small group of dedicated volunteers who distributed literally millions of free condoms wherever men met for sex.

We were on a mission: every location and every interaction was another opportunity to promote HIV prevention.

“We trusted doctors and scientists”

We made weekly rounds of smoky bars with a skateboarding drag queen dressed as a nun and we sat in steamy bathhouses and talked to naked strangers about their sexual activities.

Late at night after the bars closed we cruised public sex environments with a bagful of condoms and a fistful of referral cards. We educated closeted men cheating on their wives and girlfriends, referring them to anonymous HIV testing sites and confidential counseling services.

We distributed condoms and clean needles to street kids and hustlers and transgender sex workers and injection drug users, and we collected untold thousands of used syringes for safe disposal.

We spoke to students of all ages and to young offenders in juvenile detention and we sat in healing circles in maximum-security penitentiaries with convicted rapists and murderers and encouraged them to keep each other safe.

We trusted doctors and scientists, even as the findings and recommendations changed. For years we used condoms and lubricants containing Nonoxynol-9 because health authorities told us that it might help prevent the spread of HIV, and then we stopped using it when studies showed that it actually increased the risk of infection.

We didn’t freak out or give up or give in to conspiracy theories and stop trusting science; instead we adjusted our behaviour as new and sometimes contradictory data became available.

‘To stay safe, to stay strong’

We told each other to stay safe, to stay strong. We put up posters encouraging everyone to “Be Here for the Cure.” Those of us with HIV took highly toxic pharmaceuticals for years and willingly participated in clinical drug trials until more effective and less damaging antiretroviral therapies eventually transformed HIV into a manageable illness.

Those of us who were as yet uninfected signed up for Phase III vaccine trials, allowing multinational pharmaceutical companies to inject us with experimental vaccine candidates, putting our bodies at risk for the greater good.

We told each other to be patient, that an effective vaccine would be available within a few years, never imagining that decades later the world would still be waiting.

We did all of this with insufficient government funding, with insufficient media attention and with insufficient support from our families of origin, while politicians largely ignored our plight and religious leaders preached that we got what we deserved and hateful bigots picketed our funerals with signs saying “God Hates Fags” and most people were simply oblivious to what was happening because it wasn’t happening to them.

“Normal wasn’t what we wanted; we wanted things to be better

We didn’t whine about the inconvenience the virus was causing. We didn’t demand that the government tell us exactly how much longer the pandemic would last, or complain that we just wanted everything to go back to normal. Normal wasn’t what we wanted; we wanted things to be better.

We took to the streets to demand civil rights and adequate research funding and more effective treatment options, not to demand that hairdressers and nail salons re-open.

I’m 53 years old and I have been successfully managing to avoid contracting and spreading a potentially deadly virus not just for the past few months, but for my entire adult life.

I first heard about AIDS when I was an adolescent, back when it was tentatively known as GRID: Gay-Related Immune Deficiency. I saw a small story in the local newspaper about gay men in San Francisco and New York dying from a mysterious new illness, and even though I had never been to San Francisco or New York and even though I was too young to have had sex and had no one to talk to about being gay, I thought to myself: I better pay attention to this. I better take this seriously. Or it might kill me.

“I took it seriously”

I’ve done things in my life of which I’m not proud, but this is not one of them: I paid attention. I took it seriously. I didn’t let it kill me. Nor did I let it stop me from having an active and adventurous sex life, but I took precautions. I stayed safe, I stayed strong.

I lived to tell the tale.

So please: wear a mask in public, especially indoors. Avoid crowds and wash your hands frequently. Listen to public health officials. Trust the science and follow the recommendations, even as they might change.

This is the new normal; it might continue for years. Prepare yourself to be in this for the long-haul. Ignore the risks at your peril, or learn from the experience of the gay community in how to effectively respond to a pandemic with no end in sight: do your small part, protect yourself and take care of each other, work together for the common good. Stay safe. Stay strong.

Adapt and survive.

Complete Article HERE!

How Can We Bear This Much Loss?

In William Blake’s engravings for the Book of Job I found a powerful lesson about grief and attachment.

By Amitha Kalaichandran

If grief could be calculated strictly in the number of lives lost — to war, disease, natural disaster — then this time surely ranks as one of the most sorrowful in United States history.

As the nation passes the grim milestone of 200,000 deaths from Covid-19 — only the Civil War, the 1918 flu pandemic and World War II took more American lives — we know that the grieving has only just begun. It will continue with loss of jobs and social structures; routines and ways of life that have been interrupted may never return. For many, the loss may seem too swift, too great and too much to bear, each story to some degree a modern version of the biblical trials of Job.

I thought of the biblical story of Job last month when I was asked to speak to the National Partnership for Hospice Innovation. How would I counsel others to cope with losses so terrifying and unfair? How could those grieving find a sense of hope or meaning on the other side of that loss?

In my research I found myself drawn to the powerful rendition of the Book of Job by the 18th-century British poet, artist and mystic William Blake, in particular his collection of 22 engravings, completed in 1823, that include beautiful calligraphy of biblical verses.

Job, of course, is the Bible’s best-known sufferer. His bounty — home, children, livestock — is taken cruelly from him as a test of faith devised by Satan and carried out by God. He suffers both mental and physical illness; Satan covers him in painful boils.

Job is conflicted — at times he still has his faith and trusts in God’s wisdom, and other times he questions whether God is corrupt. Finally, he demands an explanation. God then allows Job to accompany him on a tour of the vast universe where it becomes clear that the universe in which he exists is more complex than the human mind could ever comprehend.

Though Job still doesn’t have an explanation for his suffering, he has gained some peace; he’s humbled. Then God returns all that Job has lost. So, the story is, in large part, about the power of one man’s faith. But that’s not all.

The verses Blake chooses to inscribe on his illustrations suggest there’s more. In the first engraving we see Job’s abundance. Plate 6 includes the verse: “Naked came I out of my mother’s womb, and naked shall I return thither: The Lord gave, and the Lord hath taken away.

So, the Book of Job isn’t just about grief or just about faith. It’s also about our attachments — to our identities, our faith, the possessions and people we have in our lives. Grief is a symptom of letting go when we don’t want to. Understanding that attachment is the root of suffering — an idea also central to Buddhism — can give us a glimpse of what many of us might be feeling during this time.

We can recall the early days of the pandemic with precision; rites that weave the tapestry of life — jobs, celebrations, trips — now canceled. In our minds we see loved ones who will never return. Even our mourning is subject to this same grief, as funerals are much different now.

In Blake’s penultimate illustration in this series Job is pictured with his daughters. Notably Blake doesn’t write out this verse from Job; instead he writes something from Psalm 139: “How precious also are thy thoughts unto me, O God! How great is the sum of them!” In the very last image, however, God has returned all he had taken from Job — children, animals, home, health and more. Here, Blake encapsulates Job 42:12: “So the Lord blessed the latter end of Job more than his beginning: for he had 14,000 sheep, and 6,000 camels, and 1,000 yoke of oxen, and 1,000 donkeys.

Blake intentionally didn’t make the last image a carbon copy of the first, likely in order to reflect new wisdom: an understanding that we are more than just our attachments. The sun is rising, trumpets are playing, all signifying redemption. Job became a fundamentally changed man after being tested to his core. He has accepted that life is unpredictable and loss is inevitable. Everything is temporary and the only constant, paradoxically, is this state of change.

So, where does all of this leave us now, as we think back to how our attachments have fueled our grief, but perhaps also our faith in what’s to come? Can we look forward to a healthier, more just world? Evolution can sometimes look like destruction to the untrained eye.

I think it leaves us with a challenge, to treat our attachments not simply as the root of suffering but as fuel that, when lost, can propel us forward as opposed to keeping us tethered to our past. We can accept the tragedy and pain secondary to our attachments as part of a life well lived, and well loved, and treat our memories of our past “normal” as pathways to purpose as we move forward. We still honor our old lives, those we lost, our previous selves, but remain open to what might come. Creating meaning from tragedy is a uniquely human form of spiritual alchemy.

As difficult as it is now, in the midst of a pandemic, it is possible — in fact, probable — that after this cycle of pain we feel as individuals and collectively that we might emerge with a greater understanding of ourselves, faith (if you’re a person of faith), and our purpose.

The word “healing” is derived from the word “whole.” Healing then is a return to “wholeness” — not a return to “sameness.” Those who work in hospice know this well — the dying can be healed in the act of dying. But we don’t typically equate healing with death.

Ultimately, to me, that’s the lesson offered by Blake’s Job: understanding his role in a wider universe and cosmos, transformed in his surrender, and the release from the attachments to his old life. Job had the benefit of journeying across the universe to understand his life in a larger context.

We don’t. But we do have the benefit of being his apprentices as we begin to emerge from this period, and begin to choose whether it propels us forward or keeps us stuck in pain, and in the past.

Complete Article HERE!

How death doulas are helping people process grief during the pandemic

By Tracey Anne Duncan

Like so many people, I have spent much of this pandemic grappling with grief. I’ve lost people I love, and even now, people I care about are ill. Even if you haven’t personally lost someone, you’re likely tapped into the collective sense of mourning. It’s hard to know how to comfort people who are dying or the people who love them under any circumstances, but when you can’t be together, it makes it even harder.

That’s where death doulas step in. In case you aren’t familiar with the term, a death doula is like an end of life midwife. They help dying people by guiding them and their families through the dying process. They help people plan out their death experiences. They can aid in navigating the practical parts — like wills and funeral planning, and also the emotional aspects — like helping people figure out what kind of rituals will make grieving cathartic.

Many of the usual ways that dying people and those who love them deal with death — deathbed visits, meetings with spiritual advisors, grief counseling — are not available to us right now. We may not get to have much, if any, contact with a person dying of coronavirus. In this pandemic of mass uncertainty, death doulas can help us through the grieving process.

“Doulas are professionals who provide support and guidance to individuals and their families during transformative life changes,” Ashley Johnson, an Atlanta-based death doula and founder of Loyal Hands, a service that matches people with end-of-life doulas, tells me. These doulas can train family members in some of the practical aspects of caregiving, help people create support plans, and counsel those who are dying and the people who love them, Johnson tells me.

Death doulas are also educators, in a way. Most of us spend a lot of time trying not to think about death, and we aren’t well-versed with the death process. Most of us aren’t even aware that death is a process that can be charted. Death doulas help folks get familiar with the normal and natural stages of dying, Johnson tells me. In the terrifying and confounding moments when grieving people are wondering what happens next and how they can deal with it with dignity, death doulas can step in to fill in the blanks.

There’s kind of a new-age, woo-woo stigma surrounding the work that death doulas do. They aren’t priests and they aren’t psychiatrists, so their professional world is kind of murky spiritual-ish/life coach-ish territory. But some psychologists do think that death doulas can play an important role in helping people cope with grief. “A doula could help people figure out how they want to mourn,” says Aimee Daramus, a Chicago-based psychotherapist.

Daramus adds that people should be mindful that many doulas aren’t trained therapists, but because they are familiar with managing grief so they are generally able to tell when a clinical professional is necessary. For people who are spiritually inclined, but not formally religious, this middle ground can be a comfortable place to mourn without devolving into either over-medicalized melancholy or eccentric science-shunning spiritualism.

“A doula should be able to recognize when someone’s thinking or behavior is starting to go beyond the normal range of mourning experiences.” In this way, death doulas can be a touchstone for figuring out if a person is having a healthy grief response or if they may benefit from another type of help. There is no one right way to grieve, of course, but some people can sink into depression if they don’t process their grief as it’s playing out.

One of the benefits of working with a death doula is that you can shop around to hire someone who fits your needs and understands the cultural specifics of your background. “A professional should work to understand the unique cultural practices relevant to that individual or family,” says Thomas Lindquist, a Pittsburgh-based psychologist and professor at Chatham University. This is especially important, he says, during important life milestones.

A lot of folks in the hospice and funeral industries will likely have a passing knowledge of many kinds of death practices, but you can find a death doula who shares your beliefs, or who literally speaks your own language. Grieving, while it is a universal experience, isn’t generic, and Linquist says that it’s important for a family or person’s religious beliefs to be incorporated into their care plan.

But how can a doula help someone die with dignity if they can’t even be in the same room with them? “As doulas, we have had to get really creative about the ways we meet with people,” says Christy Moe Marek, a death doula in Minneapolis/St. Paul, and an instructor at International End of Life Doula Association (INELDA). Marek says that she has met with the families of dying people on their decks and porches, but that she has had to meet with most dying people via Zoom. It’s not ideal, she says, but adds, “it is opening up such possibilities given the constraints of the pandemic.”

Death doulas are finding new ways to support people. “So much of the way this works right now is in helping both the dying and their loved ones to manage expectations, reframing what they hope for, and to shift focus onto how the ways we are connected whether we are able to be together in person or not,” Marek says.

Marek says that helping people accept the reality of difficult experiences is really the whole point of her work. “During the pandemic, what is actually happening is different than we could possibly imagine and we may not like it. We may actually hate it with our whole being, but it won’t change what is. So we work with that,” Marek says, “And that is what ends up being the mark of a good death.”

Complete Article HERE!

The Final Chapter

By Melissa Red Hoffman, MD

The first time I saw a death certificate, I was 19 years old. The cause of death was listed as “laceration of the trachea and esophagus, also laceration of heart and lungs with fractures and bleeding caused by two gun shots in the neck and chest.” The death certificate belonged to my father, killed by a terrorist while on a business trip in Cairo. By the time I laid eyes on it, the certificate only served to confirm a very painful truth: My father’s story had come to a very tragic and bloody end.

It’s 26 years later and I’ve managed to use this tragedy to inspire a career focused on both trauma and hospice and palliative medicine. In the simplest terms, I spend half my time trying to save lives and the other half trying to ensure a good death. For me, it works. But there’s no denying that my father’s legacy is always lingering in the background, whether I am in the trauma bay or at a patient’s bedside. The cause of death imprinted on that death certificate, along with the fear, pain and suffering that I assume it caused my dad, and the grief, sadness and never-ending longing that it evoked within me and many members of my family, is never far from my mind. And for reasons that I don’t fully understand, I have reread that death certificate more times than I can count.

That being said, the first time I was actually handed a death certificate to complete, I was well into my yearlong hospice and palliative medicine fellowship, and my only response was, “What am I supposed to do with this?” Despite 10 years of training including medical school, general surgery residency and critical care fellowship, I had never seen this form in the hospital, much less received any guidance on how to complete it. My hospice attending provided some cursory instruction and assured me she was available if I had questions, and that was that.

Since then, I’ve filled out more than 100 of these forms; when I work as a hospice attending, it’s not unusual for me to fill out a half-dozen death certificates during an eight-hour shift. The CDC publishes a free guide ( www.cdc.gov/ nchs/ data/ misc/ hb_me.pdf) that has proven to be helpful to me as I’ve attempted to correctly determine and report the cause of death. State medical boards stress that physicians should exercise their best clinical judgment when filling out the form and that lawsuits involving death certificates are exceedingly rare, but I still sometimes find it nerve-wracking to determine the exact steps that led to a patient’s ultimate demise. While completing a death certificate presents an intellectual challenge and demands a short, but not insignificant, time commitment, I have recently come to view the process as something more profound than another item on my to-do list. Because this form is required for both burial and cremation, I now regard it as both the final chapter of a patient’s life story and the first chapter of a family’s bereavement narrative.

I often think of my father when filling out these forms and it always gives me pause. When I open the medical record, I’m usually touched by the thought that I’m very likely the last physician who will ever study this information. Reading through the chart, I like to linger for a moment or two and think: Who was this patient? What did he do for work? Who did she love, and, just as importantly, who loved her? I also find myself wondering what happened. What, if anything, could we have done differently or better? Could we have caused less suffering? Provided more comfort? Consulted palliative care earlier or at all?

Last week, while I was working at the local inpatient hospice facility, a female patient, five years younger than me and recently diagnosed with metastatic cancer, died before I had the opportunity to round on her. When I went to view her body, I was struck by the stark difference between the glowing, robust woman pictured in a photo hanging above her bed and the bald, gaunt corpse lying curled up on her side. “She truly had nothing left to give,” I commented to the nurse and the chaplain as they gathered her few belongings to return to her family. As I was getting ready to leave for the day, the funeral director arrived to collect her body and asked if I had a few minutes to complete her death certificate. I knew almost nothing about this woman—she had been under my care for only a few short hours—and yet I was tasked, and blessed, with signing off on the final chapter of her life. With this last act of patient care, I was able to support her family in the first steps along their grief journey.

As a surgeon trained in hospice and palliative medicine, my personal narrative has changed from “There’s nothing more I can do” to “Let me walk with you.” Taking the time to complete a death certificate is another way for me, and all surgeons, to follow a patient’s story to the very end.

Complete Article HERE!