Grief in a Pandemic:

Holding a Dying Mother’s Hand With a Latex Glove

by Deborah Bloom and Nathan Layne

Doug Briggs put on a surgical gown, blue gloves and a powered respirator with a hood. He headed into the hospital room to see his mother – to tell her goodbye.

Briggs took his phone, sealed in a Ziplock bag, into the hospital room and cued up his mother’s favorite songs. He put it next to her ear and noticed her wiggle, ever so slightly, to the music.

“She knew I was there,” Briggs recalled, smiling.

Between songs by Barbara Streisand and the Beatles, Briggs conference-called his aunts to let them speak to their sister one last time. “I love you, and I’m sorry I’m not there with you. I hope the medicine they’re giving you is making you more comfortable,” said Meri Dreyfuss, one of her sisters.

Somewhere between “Stand by Me” and “Here, There, and Everywhere,” Barbara Dreyfuss passed away – her hand in her son’s, clad in latex. It would be two days before doctors confirmed that she had succumbed to COVID-19, the disease caused by the coronavirus.

Dreyfuss, 75, was the eighth U.S. patient to die in a pandemic that has now killed more than 1,200 nationally and nearly 25,000 worldwide. She was among three dozen deaths linked to the Life Care nursing home in Kirkland, Washington, the site of one of the first and deadliest U.S. outbreaks. (For interactive graphics tracking coronavirus in the United States and worldwide, click https://tmsnrt.rs/2Uj9ry0 and https://tmsnrt.rs/3akNaFr )

Dreyfuss’s final hours illustrate the heartrending choices now facing families who are forced to strike a balance between staying safe and comforting their sick or dying loved ones. Some have been cut off from all contact with parents or spouses who die in isolation, while others have strained to provide comfort or to say their final goodbyes through windows or over the phone.

Just three days before his mother died, Briggs had been making weekend plans with her. Now, in his grief, he found himself glued to news reports and frustrated by the mixed messages and slow response from local, state and federal officials.

“You find out all these things, of what they knew when,” Briggs said.

Officials from Life Care Centers of America have said the facility responded the best it could to one of the worst crises ever to hit an eldercare facility, with many staffers stretched to the brink as others were sidelined with symptoms of the virus. As the first U.S. site hit with a major outbreak, the center had few protocols for a response and little help from the outside amid national shortages of test kits and other supplies.

‘NOT FEELING TOO GOOD’

A flower child of the 1960’s, Dreyfuss lived a life characterized by art and activism. After marrying her high school sweetheart and giving birth to their son, she pursued a degree in women’s studies at Cal State Long Beach, where she marched for women’s equality and abortion rights.

Furious over President Gerald Ford’s pardoning of former president Richard Nixon in 1974, Dreyfuss took to her typewriter and penned an angry letter to Ford. “Today is my son’s 9th birthday,” she wrote of a young Briggs. “I do not feel like celebrating.”

By the time she arrived at the Life Care Center in May 2019, years of health issues had dimmed some of that spark, her son said. Fibromyalgia and plantar fasciitis restricted her to a walker or a wheelchair, and chronic obstructive pulmonary disease required her to have a constant flow of oxygen.

When her son visited on Feb. 25, he brought a grocery bag of her favorites, including diet A&W root beer. She awoke from a nap and smiled at him, but hinted at her discomfort.

“Hi Doug,” she said. “I’m not feeling too good.”

Still, Dreyfuss talked about an upcoming visit with her sisters – the movies she wanted to see, the restaurants she wanted to try. The mother and son then had only a vague awareness of the deadly virus then ravaging China.

In hindsight, Briggs realized he had witnessed the first signs of her distress. His mother was using more oxygen than usual, her breathing was more strained.

At the time, staff at the nursing home believed they were handling a flu outbreak and were unaware the coronavirus had started to take hold, a spokesman has said.

‘A TINY FOOTNOTE’

Two days later, Briggs dropped by to see his mom. She felt congested, and staff were going to X-ray her lungs for fluid. Briggs, 54, still saw no red flags, and continued to discuss weekend plans with his mother.

“I hope we can finally watch that new Mr. Rogers movie,” she told him, referring to the film, A Beautiful Day in the Neighborhood.

Briggs hugged his mom before she was wheeled to the imaging room and drove for a quick meal. Soon after, he received a call from the nursing home. His mother was experiencing respiratory failure. She was on her way to the hospital. Doug rushed to nearby EvergreenHealth Medical Center. By then, she was unresponsive.

At the time, there were 59 U.S. cases of coronavirus, a number that has since soared to more than 85,000.

After hearing of her sister’s sudden hospitalization, Meri Dreyfuss remembered an earlier voicemail from Barbara: her distant voice, groaning for 30 seconds. When she had first heard it, she assumed Dreyfuss had called by accident, but now she realized her sister was in pain. “It haunts me that I didn’t pick up the phone,” she said.

Briggs spent close to 10 hours the next day in his mom’s hospital room. He wore a medical mask and anxiously watched her vital signs – especially the line tracking her oxygen saturation.

On his way out the door, a doctor took him aside to say they were testing her for the coronavirus. He remembered the difficulty reconciling the outbreak taking place on television – far away, in China – with what was happening in his mother’s hospital room.

In the Bay Area, Meri and Hillary Dreyfuss were packing their suitcases on Feb. 28 when Briggs telephoned. After the call, they decided that visiting their sister would pose too much danger of infection.

“I realized there was no way we were going to get on a plane at that point, because we couldn’t see her,” said the middle sister, Hillary. “And now, it seemed that we shouldn’t be seeing Doug, either.”

They canceled their flights. On Saturday, Feb. 29, Briggs learned his mother’s condition was deteriorating. Tough decisions loomed. Briggs and his aunts decided to prioritize making her comfortable over keeping her alive. Doctors gave her morphine to relax the heaviness in her lungs.

She died the next day.

Having emerged from a two-week quarantine, Briggs will soon retrieve his mother’s cremated remains. The family has been struggling with how to memorialize her life in such chaotic times.

“All the things that one would want to happen in the normal mourning process have been subsumed by this larger crisis,” said Hillary Dreyfuss. “It’s almost as though her death has become a tiny footnote in what’s going on.”

Complete Article HERE!

It’s Time to Talk About Death

The coronavirus pandemic highlights how much we need to have conversations about end-of-life care.

By Sunita Puri, M.D.

Joseph, a man in his 70s, has been on a ventilator for two weeks. His heart, lungs and kidneys are failing. Though I know these facts about his physiology, I will never see him up close. I can only glance at him through clear glass doors, the ventilator and dialysis machine obscuring his face. The coronavirus has limited the number of physicians who can enter his room.

I cannot sit with Joseph’s wife and children to ask what sort of medical care he would want. I cannot read their body language, lean in toward them or offer a tissue as they cry. Now, because of the coronavirus, most hospitals don’t allow families to visit.

Instead, I met Joseph’s wife and children on a Zoom conference call.

“I want to apologize to you for being a face on a screen,” I began. “I wish we could talk about this in person.”

They nodded together, their eyebrows furrowed.

“I wish that I had better news to share,” I said. “Unfortunately, despite our very best efforts to support Joseph’s heart, lungs and kidneys, his body is showing us that he is getting sicker.” I watched, disembodied from a distance, as they hugged each other and cried.

His wife told me that Joseph had never talked with her about what he would want in this sort of situation. “I don’t know what he would say,” she said. “We didn’t think this would ever happen.”

Americans are not good at talking about death. But we need to be prepared for when, not if, illness will strike. The coronavirus is accelerating this need.

In Italy, doctors have had to make excruciating decisions about which patients receive ventilators, which are in short supply. In the United States, we are already facing shortages of life-sustaining therapies; doctors will need to make these same difficult decisions.

Our collective silence about death, suffering and mortality places a tremendous burden on the people we love, and on the doctors and nurses navigating these conversations. We should not be discussing our loved one’s wishes for the first time when they are in an I.C.U. bed, voiceless and pinned in place by machines and tubes.

Talking about death is ultimately talking about life — about who and what matters to us, and how we can live well even when we are dying. Rather than being motivated by fear and anxiety, we can open these discussions from a place of care and concern.

Here’s how I opened a conversation about death with my own parents earlier this month: “Mama, Daddy, seeing a lot of people getting really sick with the coronavirus made me think of both of you. None of us knows what’s around the corner, and I want to be sure I know what you would want for yourselves when you get really sick,” I told them. “I want to be your voice so that I can make decisions for you, not for myself.”

“If I needed a ventilator for a short time, or dialysis, that would be OK, but I would only want treatments that would help me stay independent,” my mother replied.

My father nodded in agreement. “My main hope is to be with all of you. If I will lose my ability to be myself, if my mind will never be clear, please just let God take me,” my father told me, stirring his tea.

Though it is a daunting task, talking about death offers opportunities for grace and connection with our loved ones. Last summer, I watched as a patient’s brother told her for the first time how much he loved her, just before she told him she was choosing hospice instead of a clinical trial. In the fall, I walked the wife of a patient into her husband’s hospital room, where they renewed their wedding vows amid cake, balloons and glittery confetti.

“This was what she always wanted,” he told me when we discussed what was most important to him. “I put it off for so long, but I have to do it before I die.”

Working in the hospital with patients suffering from the coronavirus made me ask myself the questions I hope you will ask yourselves and the people you love:

  • What is most important to me in my life? (My family and pets, and the ability to write and doctor).
  • What makes my life meaningful? (My work; dancing; being outdoors; being with my loved ones).
  • What sort of quality of life would be unacceptable to me? (Being permanently bed-bound or neurologically devastated; indignity and suffering; depending on others for personal care).
  • Who is best positioned to speak on my behalf? (My brother).
  • Who would I not want involved in decision making? (Family living abroad).
  • Would I want to undergo C.P.R. should my heart stop? (Only if the issue leading to the cardiac arrest is reversible. If my heart stopped even when I was being sustained on life support machines or dying from an incurable disease, then I’d prefer to die peacefully rather than with C.P.R.).
  • What would bring me comfort if I were hospitalized? (Pictures of my family; music I love playing in my room; prayer).

This is by no means an exhaustive list of questions. The Conversation Project offers many more, as well as guidance on how and when to begin these conversations. The Serious Illness Conversation Guide gives health care providers a road map of when and how to start asking patients about dying. Both resources offer the compassionate, incisive — and often unfamiliar — language required for us to ask the right questions and empower our loved ones to share specific, honest answers.

Confronting our fears about death — having a conversation about it in frank terms — can be alternately terrifying and tender. Yet knowing how to honor our loved ones’ wishes when they can’t speak for themselves is one of the bravest and most loving things we can do.

Complete Article HERE!

A Daughter Learns in Voicemails That Coronavirus Has Killed Her Mother

by Tim Reid

Debbie de los Angeles woke up on March 3 to two voicemails from nurses at the Seattle-area care home that housed her 85-year-old mother, Twilla Morin.

In the first one, left at 4:15 a.m., a nurse asked a troubling question – whether the “do not resuscitate” instructions for her mother’s end-of-life care were still in force.

“We anticipate that she, too, has coronavirus, and she’s running a fever of 104,” the woman on the recording said. “We do not anticipate her fighting, so we just want to make sure that your goal of care would be just to keep her here and comfortable.”

The nursing home in Kirkland, Washington was dealing with the beginnings of an outbreak that has since been linked to more than 30 deaths. De los Angeles had not yet fully grasped the grave threat; she comforted herself with the thought that her mother had made it through flu outbreaks at the center before.

Then she took in the next voicemail, left three hours after the first by a different nurse.

“Hi Debbie, my name is Chelsey … I need to talk to you about your Mom if you could give us a call. Her condition is declining, so if you can call us soon as possible that would be great. Thanks. Bye.”

De los Angeles called the home immediately. Her mom was comfortable, she was told. She did not change the “do not resuscitate” instruction. She wanted to visit, but held off: She is 65, and her husband Bob is 67; both have underlying medical conditions that pose serious risks if they contract coronavirus. She thought they had more time to find the best way to comfort her mother in what might be her final hours.

At 3 a.m. the next morning, Wednesday, March 4, de los Angeles woke up and reached for her phone. Life Care Center had called – leaving another voice message just a few minutes earlier, at 2:39 a.m.

“I know it’s early in the morning but Twilla did pass away at 2:10 because of the unique situation,” the nurse said. “The remains will be picked up from the coroner’s office. They’ve got your contact.”

The “unique situation” has of course become tragically common worldwide, as thousands of families have been separated from their loved ones in the last days before they died in isolation, often after deteriorating quickly. The three voicemails – eerily routine and matter-of-fact – would be de los Angeles’ final connection to her mother. She had gone from knowing relatively little about the threat of COVID-19 to becoming a bereaved daughter in the span of one day.

The hurried voicemails with such sensitive information were one sign of the chaos inside the facility at the time, as nurses worked feverishly to contain the outbreak while residents died from a virus that was just hitting the United States. One of the nurses who called de los Angeles, Chelsey Earnest, had been director of nursing at another Life Care facility and volunteered to come to Kirkland to care for patients through the outbreak. She never expected the disease would cause dozens of deaths and the mass infection of patients and staff.

Earnest worked the night shift, when patients with the disease seemed to struggle the most, and many, like Morin, succumbed to the disease. Infected patients developed a redness in and around their eyes. The center’s phones rang constantly as worried families called for updates. About a third of the center’s 180 staff members started showing symptoms of the disease; the rest started a triage operation.

“There were no protocols,” said Life Care spokesman Tim Killian, as nurses found themselves thrust into a situation more dire than any faced by an elderly care facility “in the history of this country.”

The center’s nurses, he said, would not normally leave such sensitive information about dying relatives in voicemails, but they had little time to do anything else – and did not want anyone to hear about a loved one’s condition in the news before the center could inform them. Outside the home, journalists and family members gathered for the latest scraps of information on the home’s fight against the virus. Many relatives, barred from going inside for safety reasons, stood outside the windows of their loved ones’ rooms, looking at them through the glass as they conversed over the phone.

Leaving the emergency voicemails, Killian said, made “the best of a difficult situation.”

From the outside, the messages appear abrupt and impersonal, but may well have been the best or only way to properly notify families in such a crisis, said Ruth Faden, professor of biomedical ethics at John Hopkins University’s Berman Institute of Bioethics. While medical professionals should normally aim to impart such urgent information in person, the circumstances – an overwhelmed staff, dealing with dozens of dying patients – likely made that impossible, she said.

“The way to find out is difficult, always,” Faden said. “What people remember is how much the nurse cared about the person.”

When de Los Angeles heard of her mother’s death in one of those voicemails, she immediately called one of the nurses back, looking for any bits of information about her mother’s final hours. The nurse sounded upset.

“She told me my Mom was one of her favorite people there; she was going to miss seeing my Mom going up and down the hallway in her wheelchair,” de los Angeles said.

They had given her mother morphine and Ativan to keep her calm and comfortable, the nurse told her.

“My Mom was asleep, and then she just went to sleep permanently,” de los Angeles said.

De los Angeles, an only child, aches over not having spoken to her mother before she died. Morin had been a bookkeeper for several companies. De los Angeles fondly remembers doing household chores with her mother on Saturday mornings, then going to the local mall or to Woolworth’s for lunch.

The separation continued even after her mother’s death. De los Angeles telephoned the crematorium where her mother had been taken, as Morin had arranged years earlier, to ask if she could view the body.

“Absolutely not,” the woman told her, out of concern de los Angeles could be infected.

Morin had been tested for coronavirus shortly after she died, on March 4. The results confirmed her coronavirus infection a week later. Soon afterwards, she was cremated.

“We picked up her ashes on Saturday,” she said. “I never saw or spoke to mom. It’s put off the closure.”

It’s also put off the funeral. De los Angeles had planned the ceremony for April 4 – the birthday of her father, who died ten years ago. Her ashes would be placed next to his. But the service will have to wait because Washington’s governor, Jay Inslee, has banned gatherings of 10 people or more.

In the meantime, de los Angeles has worked to make sure her mother’s death certificate records her as a causality of the pandemic. The doctor who signed it did not have confirmed test results showing a COVID-19 infection at the time of her death, de los Angeles said, and listed the cause as “a viral illness, coronary artery disease and a respiratory disorder.” But the doctor has since moved to include coronavirus as a cause, at de los Angeles’ request.

As she waits for the funeral, de los Angeles has put the urn holding her mother’s ashes behind some flowers on the mantle in her living room. She says she can’t bear to look at it.

Complete Article HERE!

Death of the funeral

Trends in commemorating those who die are shifting away from tradition. And, as the population ages and times change, the City of Kamloops is looking at how to manage the dead


A statue of Jesus stands among the remains of loved ones in a mausoleum at the city’s Hillside Cemetery. Funerals with large gatherings are on hold amid the COVID-19 pandemic.

By Jessica Wallace

Dead are the days of traditional casket burials for all.

These days, a dying man’s wish may be to grow into a tree, while another may choose to be buried in a certified eco-friendly cemetery.

Last spring, Washington became the first state in the U.S. to legalize human composting.

Funerals — once a place for obligatory tears and dark clothing — are today often substituted with a “celebration of life,” complete with funny stories and laughter.

Trends in dying are shifting away from tradition. And, as the population ages and times are changing, the City of Kamloops is looking at how to manage the dead, with an update to its Cemetery Master Plan.

The plan focuses on the city’s primary cemetery, Hillside Cemetery on Notre Dame Drive.

City civic operations director Jen Fretz said the plan will address current trends as traditional casket burial declines in popularity.

More common these days is cremation, Fretz said, noting the plan will look at demand for increased mausoleum space at Hillside Cemetery. The current mausoleums, she said, are “fully subscribed.”

Schoening Funeral Service manager Sara Lawson lauded the city’s planning, telling KTW the industry is rapidly changing.

She said some people may be surprised to know that in British Columbia, 85 per cent of people are cremated after death, with 15 per cent buried in a casket.

In Kamloops, that number is slightly lower, at 80 per cent and 20 per cent, respectively.

The overall trend, however, is a rise in cremation. Lawson believes that is happening for multiple reasons, primarily a new generation and loss of tradition.

“Newer generations aren’t attending church as much as grandma and grandpa,” Lawson said. “Back in the day, that’s what you did. You had a casket burial. You had service at the church.”

Another reason cremation is increasingly popular is due to urgency for gathering that comes with casket burial and desire for options. For example, if a family cannot unite in one place for some time until after a loved one’s death, cremation might make more sense. Perhaps everyone wants to meet in a place that was meaningful to the deceased.

“It happens more and more where there is a bit of a delay for the service,” Lawson said.

In addition to mausoleum space, the city will explore trends in green burials.

The Green Burial Council describes a green burial as a way of caring for the dead with “minimal environmental impact that aids in conservation of natural resources, reduction of carbon emissions, protection of worker health and restoration and/or preservation of habitat.”

Green burial requires non-toxic and biodegradable materials.

Lawson said only one cemetery in B.C. is certified to meet green burial standards — Royal Oak Burial Park in Victoria, which opened in 2008.

According to its website, Royal Oak is the first urban green burial site in the country, where it “returns human remains to the earth in a simple state permitting decomposition to occur naturally and so contribute to new life in a forest setting.”

Green burial prepares the body without embalming.

The body is buried in a biodegradable shroud, simple container or casket made from natural fibre, wicker or sustainably harvested wood.

Lawson said the difference between regular cemeteries, such as Hillside, and a green cemetery is the grave liner. While most cemeteries have grave liners made of concrete, wood or fibreglass, green cemeteries use dirt as a way to return remains to the elements as quickly as possible.

Schoening does offer green options, but there is no green burial site in the B.C. Interior. Green burials are not yet a common request, Lawson said, but she expects it will become more in demand in the next five to 10 years.

The city will also explore the potential for a scattering garden, which is a place to scatter ashes. Lawson said scattering gardens may look like flower gardens, wherein ashes can be scattered for a fee.

Compared to scattering someone’s ashes in a backyard or elsewhere in nature, cemeteries are permanent — meaning loved ones won’t return to that special location one day to find a development in its place, a rose garden dead or a tree chopped down.

“Cemeteries stay the same,” Lawson said. “The record must remain forever.”

Updates to the Cemetery Master Plan are expected by the fall.

With need for expansion of the cemetery, rates may also be on the rise.

The city said its fees are between 20 to 25 per cent lower than similar-sized communities and the goal is to recover operating costs with revenue collected.

MODIFYING THE MEMORIAL

While funeral servcies undergo a transition, a Kamloops pastor has noticed memorials are also changing.

Rev. Steve Filyk, a minister at St. Andrew’s Presbyterian Church, said newspaper obituaries increasingly state “no funeral by request.”

He suspects it is due to the taboo nature of death. As a culture, he said, people don’t want to acknowledge death, as it is finite.

“Perpetual youth is sort of what the focus of our culture is, right? In that way, I don’t know how well prepared we are to face it — to face the loss of loved ones or face our own death,” he said.

Filyk said he worries about the psychological impact of not marking someone’s death.

“I think to set apart and designate a time, not just for yourself but for everyone, where the world will stop for a few moments. It’s about that,” Filyk said.

“A moment of silence at Remembrance Day, where the world just stops to acknowledge that this person was special. They had warts and foibles, but they were special to a bunch of people and had an impact and that their loss is felt. I think it’s important to acknowledge that.”

Of memorials that do occur, Filyk said they rarely involve a casket and often involve photo slideshows in an increasingly media-driven, photo-centric society.

In addition, Filyk said he has noticed memorials are getting longer and are often called celebrations of life.

Regardless of whether people follow a faith tradition, Filyk said it is important to acknowledge wisdom from centuries past.

Memorials can be secular or religious, he said, noting there are unique ways to honour someone. with the better memorials providing opportunities to share stories.

“Any story often reveals something interesting about who they were and I think there’s something about telling those stories that somehow helps us heal,” Filyk said.

“Maybe because we’re all together having that similar focus.”

Complete Article HERE!

Physician Aid in Dying Used Mostly by White Patients

By Roxanne Nelson, RN, BSN

In the United States, medical aid in dying (MAID) is used mostly by white patients, even after states with more racially and ethnically diverse populations legalized the practice.

Pondering why this is the case were speakers here at the National Clinicians Conference on Medical Aid in Dying (NCCMAID) 2020 during a session on ethnic and cultural considerations in aid in dying.

Factors such as culture and religious beliefs may play a role in preventing some individuals from considering this option, but a 2019 survey from the California Health Care Foundation found that there was support for MAID among African Americans.

“When asked if race and ethnicity prevented you from getting the services and healthcare you needed, 43% of black respondents said yes, that it has happened to them,” said Thalia DeWolf, RN, CHPN, clinical coordinator, Bay Area End of Life Options, Berkeley, California.

“But when asked if they would support the right to die when terminally ill, 70% of blacks and 82% of whites said yes,” said DeWolf.

“This is surprising, since it is almost at the level of the general population, and given the unequal access to medical care and unequal outcomes, they still believe that medical aid in dying should be legal,” she continued.

“We don’t bring this up to suggest complacency, but it brings up some interesting conversation to be had,” she added.

A recent study found that in Oregon and Washington, the two states where the practice has been legal for the longest period, most patients were non-Hispanic white individuals with some level of college education (JAMA Netw Open. 2019;2:e198648.)

In 2016, MAID became legal in California, a state with a much larger and far more diverse population compared to Oregon and Washington. Even so, about 88% of people who use California’s physician-assisted death law are white, according to 2018 data from the California Department of Public Health.

Speaking to Patients

There is an overall lack of participation by black patients in all programs related to end-of-life care, noted Tracey Bush, MSW, LCSW, regional practice leader, End of Life Option Act Program, Kaiser Permanente, Southern California.

“This includes aid in dying, and we consider this lack to be a healthcare disparity,” she said.

“We would be remiss to look at the disparities and participation in these programs without thinking about the disparities in the rest of our healthcare system,” she explained. “We need to think about where the line can be drawn between education, empowerment, and recruitment,” she explained.

From a programmatic perspective, she pointed out, information, pamphlets, and staffing are designed in a way that couches the MAID decision as individualistic, but not all patients have this point of view.

“My argument is that this population doesn’t really view medical decision making in that manner,” she said. “So are we designing our materials and having conversations in a way that really speaks to these patients?”

She also emphasized the need for a diverse care team across the board with regard to ideas, perspectives, cultural beliefs, gender, and ethnicity.

Complete Article HERE!

Deciding who lives and who dies

By Dr. Morhaf Al Achkar

I could soon be the physician following a policy that determines who would be denied medical care. At the same time, I could be one of those forbidden care if I needed it.

Medical leaders in Washington state quietly debated a plan to decide who gets care when hospitals fill up. Not many details are out, but the arguments echo a similar discussion in Italy, where an intensive-care unit protocol withheld life-saving care from certain people. The rejected were those older than 80 or who had a Charlson comorbidity index of 5 or more. With my diagnosis of stage IV lung cancer, I score a 6!

When I read the news, I was morally troubled, enraged and mortified.

I am in the same boat as many colleagues who have health issues or are older and could be asked to return from retirement or work accommodation to help out. Are we asking individuals to risk their lives, but will refuse them treatment if they get sick?

I am not familiar with empirical, objective evidence to support setting a threshold for who should or should not receive care as a way to improve outcomes for a community. Research to answer such an empirical question would have been unethical to start with. Using such a strategy also misuses predictive tools.

Age or the Charlson comorbidity index can help give an estimate of prognosis. But they cannot tell us how an individual person would fare in response to treatment for COVID-19. And if we want to decide who receives care, how can we forget about functional status, quality of life, and the person’s values and preferences?

Besides, the risk of eroding people’s trust is intolerable. The last thing we want is for people to lose confidence that they will be treated fairly just because of their health conditions or age. Do we intend to make such policies available to the public, or do we keep them secret so only people with privilege will know about them?

This is not the story we want to leave for history. And who said that an order from a health authority takes the moral burden off your shoulders? Have we forgiven the doctors in Nazi Germany who experimented with vulnerable patients? We humans carry moral responsibility for our actions. If anything, blindly following an unjust order doubles the burden. Worse than doing what is unjust is not standing up to advocate for the vulnerable. What will be remembered is that we pacified our consciences with a piece of paper we called a “policy.”

We can do better.

Restricting people from accessing care is not the only strategy. We can continue to shift resources to optimize the work. For example, a generalist can lighten the load for the specialist. A well-trained practitioner can supervise a less-trained one. Since the epidemic is not hitting every U.S. city with the same intensity, sick people can be moved around.

If we think we cannot save everyone, let’s invite people to have conversations about death and dying. Patients and their primary-care doctors should discuss advanced directives. The patient can sign a do not resuscitate order. People could even embrace death with dignity if they live in a state that allows it.

I can make the choice to not live and forfeit my right to care. But that right cannot be taken from me. Age or health conditions cannot alter a person’s entitlement.

We can trust doctors’ abilities to make the right moral decision, and we can give them the authority and support in so doing. In today’s hyper-complex context, medical doctors should be competent to manage, case-by-case and situation-by-situation.

Yes, it will be a difficult time. When a decision has to be made between two lives, we regret having to make the decision, and we express our deep sadness. We should not make such unfortunate decisions a norm, and we should not write a policy to make it OK. It is not OK, and it will never be.

The healthcare system has a terrible track record of failing various marginalized groups. But we do have a good track record of providing exceptional care to people. Let’s take the opportunity to do it right this time and not miss our chance, because if the public perceives a failure on our part, their trust will take decades to regain.

Complete Article HERE!

The Cure for What Ails Us

By L. S. Dugdale

A National Hospice Foundation survey some years ago found that Americans are more inclined to discuss safe sex and drugs with their children than they are to talk with their terminally ill parents about preparing for death. Although this may sound reasonable—unsafe sex and illicit drugs pose a threat more immediate than death—the consequences of avoiding talk of human finitude have been disastrous.

As a medical doctor, I have cared for countless patients who have approached life’s end without giving it much thought. Such patients often wind up dying highly medicalized deaths. They approach their graves having exhausted limitless technologies and therapies, including those unlikely to help. They don’t die the way that most of us hope for—at home, in bed, surrounded by family. And those they love are often left reeling from the experience.

With COVID-19 upon us, the threat of mortality is very real, even for the young. Yet preparing well for death is not what occupies the news. Instead, the conversation is focused on minimizing spread, treating disease, and amassing personal protective equipment—all necessary measures to safeguard public health. But the fallacy here is that all of these efforts are mobilized in opposition to death when the reality is that many will die—from the infection, its complications, or something else. Pandemic increases the odds of dying imminently, but mortality has always been 100 percent.

So what are we to do? Of course it is prudent to avoid crowds, wash hands, and call your doctor if you’re sick. But this is the domain of prevention, of thwarting death. These are short-term actions that we hope have long-term consequences. But they offer no cure for what ultimately ails us. They do not solve the problem of our mortality, nor do they provide the tools to prepare for it.

From the late Middle Ages until about a century ago, preparation for death was part of life. In order to die well, one had to live well, and this was worked out in communities over a lifetime. It wasn’t random or subjective. Rather, it was profound and coherent. Daily life itself was interwoven with the practices, rituals, catechisms, prayers, and beliefs concerned with preparing for death. Society today may have lost some of that coherence, but religious traditions continue to offer the tools for wrestling with human finitude, if we’re willing to consider them.

Will COVID-19 change the way we think about our mortality? It should. And it could start on a personal level. Do you know anyone of retirement age or anyone with a compromised immune system? Most of us do. What sorts of conversations have you had with them about human finitude?

When I ask this, people often counter that they don’t even know how to begin. Here’s a start: “Mom, Dad, if you caught the coronavirus and became so sick that you couldn’t make your own medical decisions, who would you want to make them for you?” Although this question is intended to establish a legal health care proxy, it leads naturally into questions about life support and end-of-life wishes. You can ask for their thoughts about “breathing tubes” and mechanical ventilators and whether they would want cardiopulmonary resuscitation or “CPR” if their hearts were to stop. You can rehearse the arguments against the efficient elimination of human life, against the misleadingly-named but increasingly vocal “death with dignity” movement. You can promise your presence. You won’t abandon them.

If this sounds too medical, numerous resources exist to assist the non-clinician. The founder of the nonprofit Aging with Dignity published a document called Five Wishes based on his work with Mother Teresa’s homes for the dying. Five Wishes gently guides the reader through five domains relating to decision-making authority, end-of-life wishes, comfort-related care, treatment with regard to personal matters, and how the dying wish to be remembered.

These sorts of discussions do much to mitigate dread of an isolated death in an anonymous intensive care unit. But their real value lies in their ability to pivot the conversation to what really matters, the so-called “big questions”—questions of human existence and of ultimacy. Why am I here? What is life for? What happens when I die?

Of course philosophers, priests, and rabbis have been wrestling with these topics for millennia. And they’ve written intelligently and persuasively about how to make sense of them. The work has been done; we don’t need to recreate it. But we do need to stop ignoring it. We must start to face our finitude and rehearse for death.

COVID-19 is giving us another chance.

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