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!

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 State of the Medical Aid-in-Dying Debate

Diane Rehm updates us in her new book, ‘When My Time Comes’

Diane Rehm spoke during her book kickoff event Feb. 3, 2020, at the Sixth & I synagogue in Washington D.C.

By Richard Harris

Maybe, just maybe, America’s greatest taboo — talking openly about death — is itself dying a slow death. Too slow, if you ask Diane Rehm, author of the new nonfiction book, When My Time Comes.

“Until we overcome our fear about talking about death,” the longtime NPR host says, “few of us can have the end of life we envision. We’ve been so focused on living and accomplishing and moving forward that we don’t think about death as part of life.”

For 37 years, Rehm’s morning talk show — first on Washington, D.C.’s public radio station WAMU, then on NPR — allowed her to focus on living, accomplishing and moving forward. But that changed as she witnessed her husband of 54 years, John, decline to the point where he pleaded with his doctor to prescribe him a medication to end his life. And without a medical aid-in-dying law in Maryland, his doctor refused.

So, John Rehm, wracked by Parkinson’s disease, with a severely diminished quality of life, decided to starve himself to death. No water. No food. No medication. It would take him 10 days to die.

And that began Diane Rehm’s journey into advocacy. After signing off her talk show in 2016, she has immersed herself in the world of the terminally ill and studying the limited options available to those for whom palliative care (focused on relieving pain and symptoms) is not the solution to their end-of-life misery.

“We focus so much on happiness and joy surrounding birth, but we think about death as this place no one wants to go — but we’re all going there. Everybody is,” says Rehm in her office at WAMU, where she hosts the podcast “On My Mind.” A February 2019 episode discussed end-of-life issues and why so many people’s end-of-life wishes are not realized.

Discussing Aid in Dying

For several years, Rehm, 83, has crisscrossed the country, speaking to the terminally ill and their families, as well as advocates and opponents of medical aid in dying. She also talked to ethicists and physicians on both sides of the issue. It’s all part of an emerging national conversation about the right to die that Rehm has captured in her new book.

A companion public TV documentary of the same name as her book to be presented by WETA in Washington, D.C., is due out in the spring of 2021, and is being shown at festivals. See the trailer here.

During a speaking engagement in a church in Falmouth, Mass., Rehm asked audience members to raise their hands if, “you are one of those people who is not going to die.” Not a hand went up, of course, and it provoked a lot of nervous laughter.

Some of the crowd had gathered at that church for a “death café,” part of a movement that began in Europe in 2004 in which people of all ages talk candidly about dying, their fears and hopes for the end of life. It’s a sign that America’s reluctance to bring death out of the shadows may be fading.

The medical aid-in-dying movement for the terminally ill — some call it death with dignity —began in Oregon in 1994. It took another 14 years for Washington state to pass its law. “But since then, Montana (2009 State Supreme Court ruling), Vermont, California, Colorado, Washington, D.C., Hawaii, New Jersey and Maine have followed suit.

Each jurisdiction allows a patient who has no more than six months to live (certified by two physicians) to request a lethal dose of medication as long as that person has the capacity to decide and can self-administer.

Changing Minds on Medical Aid in Dying

More than a dozen other states are considering such a law, including Maryland, where Rehm testified last year in support of medical aid in dying. The bill lost by a single vote in the state Senate. But supporters, including the bill’s sponsor, the Maryland House of Delegates’ Shane Pendergrass, are optimistic that the End of Life Option Act will pass this year.

“Everyone is one bad death away from supporting the bill,” Pendergrass, a Democrat from Howard County, said during a news conference in January 2019.

Case in point: Maryland Del. Eric Luedtke, a Democrat from Maryland’s Montgomery County, who originally opposed the legislation. “The two biggest things that gave me pause were the concern about normalizing suicide (three of his family members had attempted suicide) and that some folks in the disabilities community believed aid in dying could be abused,” he told Rehm, who included his comments in her book.

Then, Luedtke’s mother, stricken with esophageal cancer, was in extreme pain — even with palliative care. A few days before she died, “she got the bottle of liquid morphine she had been prescribed, tried to drink it, tried to commit suicide,” he said.

A few months after his mother died, Luedtke signed on to the bill. “I began to question whether I had the right as an elected official, or even as her next of kin, to make that decision (of whether she could use a lethal prescription),” he said. “I think her death would have been less painful and there would have been more closure, had that option been available to her.”

Joe Fab, producer and director of Rehm’s documentary, became interested in end-of-life issues after his sister and both his parents died within four years. “We are just too frozen up in this country, talking about death,” he says.

The Core Conflict

Dr. Lonnie Shavelson, a former emergency room doctor who founded Bay Area End of Life Options in Calfornia, distilled the complex debate surrounding medical aid in dying, to a phrase, included in Rehm’s book: “You’ve got the ethic of autonomy against the ethic of maintaining life.”

The American Medical Association sides with maintaining life, opposing what it still calls “physician-assisted suicide” because the group says it’s “incompatible with the physician’s role as a healer.”

The question that remains unsettled in the context of the physician’s Hippocratic Oath is whether a doctor does more harm than good in writing a lethal prescription for a suffering, terminally ill patient.

The Catholic Church and other religious groups have not given their blessing to medical aid in dying. Diane Rehm is quick to say she respects all opposing views, but remains steadfast in her support for the terminally ill individual choosing when his or her life should end.

The public likely associates two people — Jack Kevorkian and Brittany Maynard — with medical aid in dying more than anyone else. Kevorkian, the controversial pathologist who assisted in the deaths of 130 terminally ill patients in the 1990s and was sent to prison, kicked off the national debate over the right to die.

But it was Maynard who put a new, young face on the right-to-die movement and perhaps did more than anyone in accelerating the growth of laws. Given six months to live with a brain tumor, Maynard moved to Oregon to take advantage of that state’s death-with-dignity law. Before she died on Nov. 1, 2014 at 29, her videos promoting medical aid in dying went viral.

Rehm’s Take on the Subject

At the conclusion of Rehm’s book and documentary, she asks her grandson, Benjamin Zide, a Dartmouth sophomore studying medical ethics, to pick up his phone and take a video of her as she described what would be for her a “good death.” Here’s what she says:

“I came across a perfect paragraph that Anne Morrow Lindbergh left behind. She wrote, ‘To my family, my physician and my hospital: If there is no reasonable expectation of my recovery from mental or physical disability, I request I be allowed to die and not be kept alive by artificial means and heroic measures. I ask that medication be mercifully administered to me for terminal suffering, even if it hastens the moment of my death. I hope that you who care for me will feel morally bound to act in accordance with this urgent request.’”

Last night, as Rehm kicked off her book tour at Washington, D.C.’s Sixth & I synagogue, she recounted her mother’s suffering before dying at age 49 and how John Rehm’s father and mother committed suicide. So, the subject of death was part of the conversation at their dinner table, even before John was diagnosed with Parkinson’s.

Diane Rehm says she told her husband, “When my time comes, I need some help from you. I don’t want to live to the point where I’m sick and infirm and cannot take care of myself.” And, she says, “John looked at me and said, ‘I feel the same way.’”

Complete Article HERE!

We can’t be squeamish about death. We need to confront our worst fears

Patients, their families and their doctors need to be open about the inevitable as the virus sweeps through our population

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As the coronavirus spreads through the population, there is one fact we can all agree on. Whether we like it or not, society’s greatest taboo – death and dying – has been thrust unequivocally centre stage.

How could it not, when government strategy is to allow the virus to infect huge swathes of the country in the hope of building sufficient “herd immunity” to protect from future harm? The virus has killed an estimated 3.4% of those it has infected, according to the World Health Organization, although this figure is expected to decline as the true number of people infected becomes apparent. Herd immunity, according to Downing Street’s chief scientific adviser, requires a minimum infection rate of 60% of the population. Thus we may face a potential early and unexpected death toll of hundreds of thousands of Britons.

There is, therefore, a glaring imperative to confront the topic so many of us long to squirm away from: the inescapable fact of mortality. As a palliative care doctor, I am intimately acquainted with our reluctance to square up to dying, and with the unintended harms of such squeamishness. Advance care planning – the phrase doctors use to describe proactively how much medical intervention you would wish for in extremis – is too frequently neglected, by patients and doctors alike.

Sometimes, for example, if an oncologist is less than candid about a patient’s frailty precluding any further rounds of chemotherapy, a family may be unaware that time is running out. Profound and vital conversations between family members never happen. Final messages hang in the air, forever unsaid.

Suddenly, the patient is comatose and fading. And no one has sought to find out if they would like heroic efforts at prolonging life – or if, perhaps, their final wish is to die at home, neither gowned nor tubed, with no machines and only loved ones at their side.

We are fast approaching a crunch time. NHS intensive care beds will be imminently overwhelmed with patients in dire need of mechanical ventilation. Italy’s experience has shown all too graphically that peak infection rates demand draconian rationing of health resources. In Lombardy, for example, some beleaguered hospitals have been forced to impose bans on ventilators for coronavirus sufferers aged over 60 – this despite knowing that it is predominantly the elderly who will die.

As Britain approaches peak infection, we therefore owe it to each other to start talking now. Would your mother, approaching 80, even wish for an intensive care bed? Do you, her anxious offspring, even feel able to find out? No one can pretend these discussions are easy. Our dearly beloved mums and dads are no less loved for their years; how on earth do we begin to broach the prospect of each other’s deaths?

If there is one thing I have learned from my time in a hospice, it is that these conversations rarely measure up to the degree with which we dread them. Indeed, for some elderly patients – conscious of their frailty – a little candour about the future can bring immense relief. It is fine to stumble, feel awkward, grope your way, get the words out wrong. In the end, all that matters is motive: the sincerity of your fumbled aim to tease out your loved one’s views.

Two medical truths may help you find the strength to talk and listen. First, every medical intervention has cons as well as pros. Even for young and healthy patients, intensive care is a gruelling experience that can leave serious, long-term medical problems. For the elderly, survival is more doubtful, let alone full restoration to good health.

Second, not every problem can be fixed. Sometimes, a disease is so aggressive that intensive care cannot cure, but only harm. When doctors conclude intensive care is not an option, it is not discrimination but a weighing-up of what might work, the sober balancing of benefits and risks.

In the end, an advance care plan need be nothing more technical than a chat over a cuppa. Steel yourself. Find out your loved ones’ wishes and tell them yours at the same time. There is kindness in being informed and prepared.

And – please – know that however besieged the health service becomes, we will never stop caring for every patient. You may be young, you may be old, but we will always do our best. How much you matter to us will never, ever run dry.

Complete Article HERE!