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 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!

This is what a good death could be

By Larry Beresford

Recently, a neighbor and friend of mine died. After her cancer was diagnosed as incurable, she was referred to hospice care, and family members traveled long distances to spend quality time with her during her last month of life.

Her neighbors in our condo building clamored for slots in her packed social calendar. Two days before her death, she held a socially distanced open house for people lined up six feet apart outside her door to come in for a few minutes, one and two at a time, to say their goodbyes. Then we received an email telling us she had gone, quietly, at home, in the presence of family. All in all, the kind of good death promised by hospice care at its best. And yet there’s something about how it unfolded that I’m having trouble wrapping my head around.

I had spoken with my friend a couple of weeks earlier, and she told me that she was going through the steps to obtain medical aid in dying – which became legal in California through the 2015 End-of-Life Option Act. It requires two oral and one written request to a physician for a lethal dose of medication, with a 15-day waiting period and confirmation of eligibility by a second physician. My neighbor complained to me about the bureaucratic hoops, knowing that I am a medical journalist who has written extensively about hospice and end-of-life care and trusting that I could listen non-judgmentally.

I told her that the regulatory hurdles, rightly or wrongly, were crafted to prevent the appearance of abuse for a procedure that continues to generate controversy in medical ethics. Advocates say terminally ill patients should have the right to choose the time of their deaths and to opt-out of the pain and suffering of living with an advanced illness. Opponents argue that good hospice and palliative care can obviate that pain and suffering and thus the need for patients to request a medical escape from this precious life. There is little room for compromise between those two views, but the option is now legal in California and eight other states.

Some hospices and hospitals will not participate in the end-of-life option, and it can be hard to find a doctor willing to sign the necessary forms. Very few terminally ill patients actually go through with obtaining and consuming the lethal medication. Only 551 Californians started the process in 2018, and 337 took the medication to hasten their deaths, according to state records. There are also questions about the choice of medication, which may include a combination of morphine, diazepam, and propranolol, a beta-blocker that slows the heart.

My parents died of cancer or cancer-related complications. I was present in my mother’s hospital room when death came to claim her. I was a hospice volunteer for more than 20 years and sat with a number of cancer patients in their final days. In other words, I feel familiar with the process by which cancer, which kills more than 600,000 Americans every year, makes its terminal advance.

Some patients may pursue oncologic treatments until the end, trying to stave off that advance. For others, hospice provides an option to step off the medical treadmill and receive care at home with the support of an interdisciplinary team of end-of-life experts who focus on comfort, symptom management, and maximizing opportunities for dignity and peace. Either way, terminal cancer is relentless.

With good palliative medical management, many – but not all – of the worst side effects and symptoms of terminal cancer can be managed. It can also be very messy, with incontinence, other bodily fluids, and unpleasant odors. All bodily functions will fail by the end. Most of the time, it unfolds on the disease’s timeline, as it has throughout human existence.

When someone dies of cancer, there is a retrospective sense of its inevitability, that this is what had to be. Those who witnessed its relentless advance can find comfort in that inevitability. It wasn’t a cosmic mistake that cancer has taken their loved one; it was part of the natural order of things. The loss and grief for those left behind are real, but the memories, hopefully, can be free of recriminations.

The end of life can also be a time to focus on expressing what Dr. Ira Byock calls “the four things that matter most” as one faces life’s end: please forgive me, I forgive you, I love you, thank you – plus a fifth, saying goodbye. Some have found that life becomes singularly precious when its ending looms, with opportunities for the most poignant kinds of resolutions.

To me, this is what a good death could be, one grounded in the reality that the cancer could not be denied but with doors opened for meaningful interactions along with the mess and pain. And there’s the ineffable profundity of a loved one’s final moment of transition from this world, such a huge, terrible mystery, yet guaranteed to everyone who lives. That should command our respect.

What happened to my friend? A peaceful, natural passing from the cancer? Or did she avail herself of the end-of-life option to make it happen a little sooner? If the latter, was it pain, or loss of control over the messy details, or an unwillingness to continue living with the existential awareness that death was lurking around the corner? Was she tired of living, that tiredness magnified by the cancer, or tired of talking about it? I’ll never know what she chose. It’s really none of my business. My admiration for her is unaffected, undiminished.

But I find to my surprise, thinking it might have been the case, that something feels missing. It doesn’t seem final, or quite so real. With COVID, her memorial gathering was transferred to Zoom. To me, it just doesn’t feel like the same thing, death’s natural advance versus a medical intervention to check out early, even if the outcome is more or less the same.

What were the unmanaged issues to make ending it sooner seem the right answer? Could something have been done to make her more comfortable, more willing to stay for a natural end? Could there have been more poignant farewells, more reflections, more stories? Could I have had one more chance to talk with her about what she was seeing from her vantage on the rim of eternity? Could I have heard her laugh one more time? And am I selfish to want that? That’s what I can’t get my head around.

Complete Article HERE!

‘These Are Real People Dying’ —

Why an Artist Filled His Yard With Flags

Plastic flags, each representing a Texan who died from Covid-19, outside the home of Shane Reilly, an artist in Austin

Shane Reilly plants a flag for each Texan who dies of the coronavirus. As the national death toll nears 200,000, The New York Times used an image of his memorial to illustrate the staggering scale of loss.

By

In May, when Shane Reilly, an artist in Austin, Texas, started planting one flag in his yard for every Texan who died from the coronavirus, the state had fewer than 1,000 deaths.

Now, Texas is approaching 15,000 people dead, and the nation will soon hit 200,000.

For passers-by and those who have seen pictures of the memorial, including an image featured on the front page of Monday’s New York Times, Mr. Reilly’s yard serves as a sobering reminder of the losses so many American families have endured this year.

I spoke to Mr. Reilly recently to ask how his project started, and where it stands today. Portions of our conversation have been edited for clarity.

Take me to the beginning. What made you want to do something so public? And how did you land on flags as the way to tell this story?

I’ve got an immunocompromised son, so when the coronavirus hit, I started paying close attention to it. We live on a corner, so I see people walking by every day and I would notice that they just weren’t wearing masks, and I thought, something’s not hitting home with them.

These are real people dying, real Texans dying, and I’ve got a kid in quarantine here at home and people are acting like this is almost a vacation.

So I thought, what could I put out there that would wake people up and make them say, “Oh, this is real, this is something we should pay attention to”?

Where do you get the flags?

I started getting them from Lowe’s and Home Depot. Lowe’s carries orange and pink, and Home Depot carries red and white. When I started this project we were at 850 deaths here in Texas. I thought, “Wow, 850 flags in this yard is really going to wake people up.” So I bought 1,000 just to be on the safe side.

And now we’re at roughly 15,000 deaths.

As I’m talking to you I see a guy and a girl outside, taking photos of my yard. I get a lot of that. I get a lot of people walking by and taking photos.

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The response has been pretty amazing. I’ve had several handwritten letters in my mailbox, no name on it, no return address. Just, “Thank you for doing this, I’m a first responder and I’ve seen a lot of deaths from this.” Or, “My mother died of this, thank you so much.” Other people have left bundles of flags outside. It’s been pretty touching.

For people who haven’t seen this in person, can you explain how your yard has changed over time?

In the beginning I was trying to space everything out in an even pattern. I thought that would have more of an impact, to see this uniform field of flags.

Now I’m at the point where there are so many flags I just kind of walk in between rows until I can find a large enough space, and I just plop a bunch of them down. When I hit 3,000, I had people telling me, “You’re going to run out of space.”

What started just in the corner now covers the entire front yard and the entire side yard. I put flags out about every other day, but there were certain times when Texas was spiking that I couldn’t wait two or three days because there would be 1,000 more flags I would have to put out if I waited that long.

Now that you’ve been doing this for so long, does it still carry the same emotional weight?

I never lose sight of the fact that these are people’s lives. That stays with me every time. The other day I put out 300 flags and, you know, that hits you. But also I’m looking out at this sea of flags and it seems never-ending.

I can’t keep carrying that weight like I did earlier in this project, so I’m starting to build a callous. That sounds awful, but I do have to remind myself sometimes that this was someone’s mom, this was someone’s lover, this is real.

As the nation approaches 200,000 deaths, how are you grappling with that?

My first emotion is anger. There was a plethora of information out there to suggest that we could have done things differently, but people in charge chose not to. They actively went in the other direction.

I squarely place a lot of these deaths on them. Proper leadership could have saved tens of thousands of lives.

It’s shocking and saddening and infuriating. And every day, people walk by my house still not wearing masks.

Complete Article HERE!