Coronavirus preys on what terrifies us: dying alone

by Daniel Burke

Steve Kaminski was whisked into an ambulance near his home on New York’s Upper East Side last week.

He never saw his family again.

Kaminski died days later of covid-19, the disease caused by the novel coronavirus. Because of fears of contagion, no visitors, including his family, were allowed to see him at Mt. Sinai Hospital before he died.

“It seemed so surreal,” said Diane Siegel, Kaminski’s daughter in law. “How could someone pass so quickly and with no family present?”

Mitzi Moulds, Kaminski’s companion of 30 years, was quarantined herself, having also contracted the coronavirus. She worried Kaminski would wake up and think she’d abandoned him.

 

“Truthfully, I think he died alone,” said Bert Kaminski’s, one of Steve’s sons. “Even if a doctor was there.”

As the coronavirus stalks victims around the world, one of its scariest aspects is how it seems to feed on our deepest fears and prey on our primal instincts, like the impulse to be close to people we love when they are suffering and near death.

In a painful irony, the very thing we need in moments of fear and anxiety could also kill us.

Many hospitals and nursing homes have closed their doors and placed covid-19 patients in isolation wards to prevent the disease from spreading. One doctor called it “the medical version of solitary confinement.”

Priests are administering last rites over the telephone while families sit helplessly at home.

The isolation extends beyond coronavirus patients. Amy Tucci, president of the Hospice Foundation of America, estimates that 40% of hospice patients are in hospitals or nursing homes, many of which have placed strict restrictions on visitors. Their families, too, are worried about loved ones dying without them.

“We crave closure,” said Maryland psychologist Dr. Kristin Bianchi, “so it’s only natural we would want to be there in our loved one’s final moments. We want to bear witness to that process and say our last goodbyes.”

‘Lonely deaths’ can haunt us

Something about dying alone seems to haunt us. To some it may suggest the deceased’s life lacked love and worth, and that in the end they were forgotten.

The Japanese have a word for this: “kodokushi,” meaning “lonely death.” In recent days, as funerals have been cancelled or postponed because of the virus, it can seem as if coronavirus victims simply vanished, like people in “The Leftovers.”

But some medical experts challenge the idea that scores of people are dying unaccompanied in hospitals right now. In many instances, they said, hospital staff are standing vigil by patients’ bedsides during their last moments.

It’s not ideal, they say, but they’re not quite the lonely deaths we may imagine.

As a lung specialist and member of the Optimum Care Committee at Massachusetts General Hospital, Dr. Emily Rubin is on the frontlines of the pandemic.

The hospital, where 41 employees recently tested positive for coronavirus, does not admit visitors except for limited circumstances, like births — and, in some cases, for patients near death.

But Rubin said the situation is evolving rapidly as the virus spreads. In some cases, the hospital may connect families and covid-19 victims electronically instead of in person. Other times, nurses and other hospital staff will step in to stand vigil.

“Even if the disease is too mighty, the ethic of not abandoning people is so strong,” Rubin said. “We feel like being present with people at the end of life is a huge part of what we do.

“People in a hospital are not dying alone.”

Still, shepherding patients through the last stages of life can take an emotional and physical toll on doctors, nurses and other hospital staff, Rubin acknowledged.

Dr. Daniela Lamas, a critical care doctor at Brigham and Women’s Hospital in Boston, wrote about that toll in a recent New York Times op-ed.

“The devastating image of the lonely deaths of coronavirus patients in Italy hangs over us all,” Lamas wrote. “Talking with one of the nurse practitioners in our hospital’s new Covid-19 I.C.U. one recent night, I asked what worried her most. ‘Patients dying alone,’ she replied quickly.”

But some hospice chaplains question notions of “lonely deaths,” saying that in their experience, some people want to approach the end by themselves.

“I don’t think dying alone has to always be a bad thing,” said the Rev. C. Brandon Brewer, a hospice chaplain in Maryland. “What we’ve done is make it into something that it doesn’t have to be.”

It takes away our end-of-life rituals

When we think about dying alone, we’re really talking about two separate things, psychologists say: The fear that people we love will die alone, and the fear that we ourselves will stare down death solo.

“It creates in almost everyone a sense of terror,” said Bianchi, of the Center for Anxiety & Behavioral Change in Rockville, Maryland. “We want to be be able to cushion the experience from what we believe will be a painful and difficult experience. We also want to be there because we imagine ourselves in that scenario.”

Often, it’s the people left behind who suffer more than the deceased, said Kerry Egan, a former hospice chaplain who has turned to writing essays and books. We want to be there to comfort and help the dying, she said, as if we could somehow alleviate their suffering.

“People feel a sense of guilt. What could I have done better? How could I have stopped this?” she said. “Part of that is just part of the normal grief process.”

This relentless pandemic, which brings deaths shockingly quickly, heightens the anxiety. Many people can’t get to their loved one’s bedsides to whisper last goodbyes or reconcile old grudges.

Secular and religious end-of-life rituals, too, have been stripped away. Hospice care, for example.

“Hospice is all about being able to provide an environment where people can review their life and say their goodbyes and their sorries and hold hands and kiss one another and then — poof! — all of that is just gone overnight,” said Tucci, of the Hospice Foundation. “It’s a nightmare.”

At the same time, many funeral homes have cut way back on memorials, burials and other rituals used to commemorate departed friends and family.

“Even when there are people around to support us during times of mourning, it can be an extremely isolating experience,” said Bianchi. “Take that, and then put someone into forced isolation, like we are now, and it can be absolutely agonizing.”

Dying alone is different from dying lonely

It happens too often to be a coincidence, hospice chaplains say.

Family members will maintain a constant vigil, spending hours, even days, by their loved one’s deathbed. And then, when they leave for a few moments to make a sandwich or take a shower, their beloved dies.

“There’s no coincidence in my mind,” said Brewer, the hospice chaplain in Maryland. “This is an intentional process.”

Egan agreed. “Ask anyone who has worked in hospice and they will have dozens of stories like this. “I think a lot of people want to die alone.”

In other words, there’s a difference between dying alone and dying lonely.

“Dying alone is not necessarily dying without love. It is simply in some cases the absence of another person in the room,” said Brewer. “And if that’s what someone wants, that’s OK. It doesn’t mean they were forsaken.”

In a certain sense, Egan added, we all die alone, even if we are surrounded by people we love. Often, as we die, our bodies are breaking down and our minds are elsewhere. The conscious experience of death is, by nature, solitary.

And the movie image of someone imparting profound last words upon his deathbed, encircled by his faithful family? That’s a comforting fiction, hospice chaplains said.

“That is not how it happens,” Egan said. “Many people are not responsive at the end. Their bodies are busy doing something else.”

This family said their final goodbyes by phone

Before Steve Kaminski died, a nurse practioner at Mt. Sinai set up a group call so he could hear his family’s voices one last time.

His face brightened, the nurse told family members, as each offered their tearful goodbyes or said, hoping against hope, that they’d see him when he left the hospital.

On a ventilator, Kaminski himself could say nothing.

When he died days later, it was a sudden and stunning ending to 86 years of vibrant life, said Bert Kaminski, Steve’s son.

But Bert Kaminski said he took some solace from a dinner he shared recently with his father and his father’s longtime partner. They went to a Vietnamese restaurant, drained a bottle of Merlot and then feasted on ice cream. His father was his usual bon vivant self, Bert remembers.

“People shouldn’t take it for granted that there is time to connect with them later, particularly older family members,” Kaminski said.

“This thing can come very suddenly. No visitors. No final words.”

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!

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!

Why You Should Request an Extra Layer of Support When Living with a Serious Illness

By Andrew Esch, MD

Did you know that most large hospitals in the U.S. have a specialized medical team that uniquely cares for people living with serious illnesses? If you or a loved one has any type of cancer, heart or kidney disease, dementia/Alzheimer’s disease, or any other serious illness, you should know about this extra layer of medical support. It’s called palliative care and focuses on relieving symptoms and stress that so often come with these kinds of illnesses.

The goal of palliative care (pronounced pal-lee-uh-tiv) is to improve quality of life for both the patient and the family. Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.

Experts in Symptom Management, Care Coordination and More

Your palliative care team has expert training in managing symptoms and treatment side effects. Palliative care teams help patients and families in many ways, like avoiding unwanted and unnecessary trips to the hospital.

In addition, they will make sure you have the support you need to make informed decisions about your care. Having a serious illness often means having many doctors. Your palliative care team will make sure that you, your family, and your doctors are all on the same page. They will take the time to get to know you, help you plan goals for your treatment, and coordinate with your other doctors to match your treatment options to your goals.

Palliative Care is Available in Many Settings and Most Hospitals

As of 2019, more than 70% of hospitals (with 50 or more beds) in the U.S. have a palliative care team to help people living with a serious illness. And when people receive palliative care during hospital stays, they spend fewer days in the intensive care unit, have less pain, and are happier with the care that they receive. They may also be less likely to end up back in the hospital. Palliative care is also becoming more available outside of the hospital, in clinics and at home.

What This Means for You

If you or a family member are living with a serious illness, ask your doctor for a palliative care referral as early as possible. To find out which hospitals or clinics provide palliative care where you live, search this Palliative Care Provider Directory.

To learn more about palliative care, visit GetPalliativeCare.org, an online resource with clear, comprehensive palliative care information for people living with a serious illness. The site is provided by the Center to Advance Palliative Care (CAPC).

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!

Living With Dying:

An interview with Syd Balows

By and

Our monthly column addresses the same set of questions regarding advance planning and end-of-life care to a variety of people in our community. Our intention is to generate discussion as well as collect information by exploring this one theme seen through multiple perspectives. Possibly we can develop a vision and next steps for our community!

This month’s interview is with Syd Balows who has lived at The Woods Retirement Community in Little River since 1999. He is active as a real estate broker selling homes only in The Woods. He is a charter member of the Death and Dying Group, which started in 2012 with 15 active members. In the Death and Dying group, there have been eight graduates and they all have received Gold Stars. Our current group ranges in age from 67 to 99 years old.

• In your experience in this community and your profession: What has been successfully advanced planning for?

Taking care of business! The 6 Ps says it all: Prior Planning Prevents Piss Poor Performance.

Our friend Sunny was also a founding member of the Death and Dying Group. She planned her dying process. She used VSED (Voluntary Stopping of Eating and Drinking). I spent time with her every day as she was going through the process of dying. Sunny had a list of 18 people she wanted to call and say goodbye to. I would dial the number and then hand the phone to Sunny. She would say, “Hi, I just called to say goodbye because I’m leaving this planet. You have always been such a kind friend to me.” Often times we were holding hands as the tears flowed as she was saying goodbye to her many friends.

Sunny made previous arrangements with a home funeral facilitator. Sunny had chosen to have a Celebration of Life party in her living room. Her cardboard casket was on a table awaiting decorations and wishes for a safe journey. She had a green burial in Caspar Cemetery.

When you make your own decisions you take the burden away from someone else. Be as detailed as you can be to avoid resentment with family members. Many siblings never talk to each other again because of resentments. Think clearly about what you give your beneficiaries. I have seen the men in the family get the business and the women get the furniture.

What gaps do you see in advanced planning?

Honesty – being truthful about inheritance. If the dying elder changes their mind about who the family executor will be and doesn’t share that change with the family, the results can be a family breakup.

For example, David was told by his parental unit he would be the executor of their estate. The parental unit changed their minds about which sibling was going to be executor. They chose the oldest daughter, RN Ann, to be executor and daughter, RN Laura, to be co-executor. The parents signed all the right forms to make the change of executors but didn’t tell David that he was relieved of his duties. The elders didn’t want a conflict. He was really pissed!

Laura took care of Mom every weekend for four years. After Laura reached burnout, she asked Ann to become the new caregiver. Ann quit her job at the VA, moved out of her home into a suitable rental on the river and became the POA – power of attorney – for health care until the end of Mom’s life, four years later.

David and his sisters disagreed about whether they were to be paid caregivers for their parents, or if they were supposed to donate their time to the estate as co-executors. Because there was nothing spelled out in the legal documents that addressed these issues, it caused a family conflict.

What have you seen work about end-of-life care?

Acceptance. Accept the things I can’t change. Change the things I can.

Community works. Like-minded people sharing space as we age “right on schedule.”

“Neighbors helping neighbors.” My dying group has had many graduates. We all got to help each other through the process and that has been great for our group. Get the paperwork done to say what you want it to say. “Say what you mean and mean what you say.”

What gaps do you see in end of life care?

Our local medical system is not very dependable. The fate of the hospital and its chance of survival is having a huge impact on people moving here and people wanting to move away. We have a rural hospital that, to survive, must have an affiliation with a larger hospital group with deeper pockets. We need to have a Medicare-approved hospice, rather than our previous volunteer hospice. A Medicare hospice will serve the community better.

Real estate sales in The Woods in Little River has decreased because elders do not want to live in a community without medical service and a viable hospital. Election years are always bad for real estate.

Recruiting staff for the hospital is difficult for the same reasons that people do not want to commit to coming here if they do not know if their jobs are permanent. But people who live on the coast accept the fact that they will have less in the way of medical care than someone living in a city and plan accordingly. We know that we have to travel for care.

Elder financial abuse is rampant. I have heard of family caregivers removing jewels, a granddaughter set up a meth lab in an elder’s home, changed bank accounts into her name and brought in friends to live freely. There is no return of funds lost.

Many surviving spouses do not know how to deal with household finances. They need help or to have someone in charge to go through this phase. If the spouse who does know does not share the information, it is almost tragic because you have left that person paralyzed.

Is there anything else you would like to add?

The aging process takes place every day and is frequently life-altering. It is a loss that you can no longer do today what you could do yesterday and that could be frightening. The quality of life is way more important to me than the quantity of life. Healthy aging requires acceptance of the reality of the living and dying process. Birth and death are the natural evolution of coming and going.

Death isn’t that bad a thing, because afterward there has never ever been even one single complaint.

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