A Virtual Memorial for Those We’ve Lost

The special project “What Loss Looks Like” presents personal artifacts belonging to those who have left us and explores what they mean to those left behind.

Readers submitted photos of items that reminded them of loved ones who died in the past year.

By Jaspal Riyait

As the art director of the Well desk, I’ve spent the last year looking for images to reflect the devastation of the pandemic and the grief it has wrought. As the crisis has stretched on, I’ve thought of all the people who have lost loved ones to Covid-19 — not to mention those who have lost loved ones, period — and how they were cut off from the usual ways of gathering and grieving. Watching the numbers rise every day, it was easy to lose sight of the people behind the statistics. I wanted to find a way to humanize the death toll and re-establish the visibility of those who had died.

To help our readers honor the lives of those lost during the pandemic, we decided to ask them to submit photographs of objects that remind them of their loved ones. The responses were overwhelming, capturing love, heartache and remembrance. We heard from children, spouses, siblings, grandchildren and friends — people who had lost loved ones not only to Covid-19 but from all manner of causes. What united them was their inability to mourn together, in person.

Dani Blum, Well’s senior news assistant, spent hours speaking with each individual by phone. “It’s the hardest reporting I’ve ever done, but I feel really honored to be able to tell these stories,” she said. “What struck me the most about listening to all of these stories was how much joy there was in remembering the people who died, even amid so much tragedy. Many of these conversations would start in tears and end with people laughing as they told me a joke the person they lost would tell, or their favorite happy memory with them.”

The photographs and personal stories, published digitally as an interactive feature, was designed by Umi Syam and titled “What Loss Looks Like.” Among the stories we uncovered: A ceremonial wedding lasso acts as a symbol of the unbreakable bond between a mother and father, both lost to Covid-19 and mourned by their children. A ceramic zebra figurine reminds one woman of her best friend, who died after they said a final goodbye. A gold bracelet that belonged to a father never leaves his daughter’s wrist because she is desperate for any connection to his memory.

For those who are left behind, these items are tangible daily reminders of those who have departed. These possessions hold a space and tell a story. Spend time with them and you begin to feel the weight of their importance, the impact and memory of what they represent.

Museums have long showcased artifacts as a connection to the past. So has The New York Times, which published a photo essay in 2015 of objects collected from the World Trade Center and surrounding area on 9/11. As we launched this project, we heard from several artists who, in their own work, explored the connection between objects and loss.

Shortly after Hurricane Sandy, Elisabeth Smolarz, an artist in Queens, began working on “The Encyclopedia of Things,” which examines loss and trauma through personal objects. Kija Lucas, a San Francisco-based artist, has been photographing artifacts for the past seven years, displaying her work in her project “The Museum of Sentimental Taxonomy.”

Saved: Objects of the Dead” is a 12-year project by the artist Jody Servon and the poet Lorene Delany-Ullman, in which photographs of personal objects from deceased loved ones are paired with prose to explore the human experience of life, death and memory. And the authors Bill Shapiro and Naomi Wax spent years interviewing hundreds of people and asking them about the most meaningful single object in their lives, gathering their stories in the book “What We Keep.”

As the pandemic continues to grip the nation, the Well desk will continue to wrestle with the large-scale grief that it leaves in its wake. Other features on this topic include resources for those who are grieving, the grief that’s associated with smaller losses, and how grief affects physical and psychological health. As for “What Loss Looks Like,” we are keeping the callout open, inviting more readers to submit objects of importance, to expand and grow this virtual memorial and provide a communal grieving space.

Complete Article HERE!

You’re going to die.

So now what are you going to do about it?

By

My position on death? I’m against it.

That said, I will concede I lose that argument, and that moreover, my opinion has never even mattered. Die I will.

And I am not alone in this — you will die, too. After all, death, darn it, just happens. Globally, about 65 million people die each year, 180 per day, 120 each minute. 108 billion people have walked the planet, and then died. That’s a lotta dying, and while it’s incredibly difficult and tragic — this last year especially so — that doesn’t mean we shouldn’t talk about it. Avoidance is not a solution.

Indeed, I’d argue that death is a grand mystery — sacred and important — and this last physical act of our lives can either go pretty well, like a graceful well-rehearsed piano solo or free-throw, or it can go pretty darn badly. Some of how it plays out is beyond our control, but not all of it. Some of it we can prepare for — and if anything deserves our full attention, some preparation, or some renewed clarity, death might be it.

So, the deal is: Tax Day is April 15. But I’d argue the real task — and probably the less miserable one — is to get our stuff in order for Healthcare Decisions Day, which is April 16.

I know: no one wants to do it.

I know: you’re probably starting to X out this essay, or skim it, or scowl at it.

But I’m begging you — and so are your peeps — to take a few hours now in order to save them potentially hundreds of hours. Yes, hundreds of hours. And possibly a lifetime of regret or heartache.

Getting basic and important documents done, and your simple wishes on paper, can literally be your great parting gift.

We all knew someone who left behind a mess — and we all promised ourselves not to be that person. Which means we have to set aside some time and get this stuff done.

First, there’s the medical and legal stuff – Advance Directives and a will – and making sure they’re done, signed, and accessible (they’re really no help if no one can find them). Plus, heck, just leave a note with a trusted person about where some of your stuff is and what you basically want done with it. A great place to start is The Conversation Project.

But in my death-positive work (stemming from my book Making Friends with Death: A Guide to your Impending Last Breath), I advocate writing an ethical will, too — what you stood for, your best and worst times, any reckoning or forgiving or venting or whatever you need to do.

Basically, it’s a “Goodbye letter to life,” if you will. My guess is that doing so will bring you a lot of peace, and will provide peace to those around you, too. Ideally, you don’t want to write this when you’re under duress – write it when you’re feeling great, write it on a lovely spring day, write it on April 16!

Finally, our last task is to advocate simple and direct communication about end-of-life care with those that will likely be involved with it. What looks good to you? What do you want to avoid, if possible? Get clear on what “a good death” looks like for you. Me? I’ve come to believe that a good death is simply one that has been claimed, to the extent possible. For me, that will involve: My medical wishes and decisions being respected (such as my DNR wishes being followed); I would like to die outside, or with a view of nature; I’d like to be with my children and loved ones, if possible; I’d like to be as fully informed about what’s going on, to the extent possible; I want people to be honest with me and I want to be honest with them; and I wouldn’t mind the smell of vanilla or sage and a taste of good whiskey on my lips. Such wishes are written down in about 10 different places, all accessible; my children roll their eyes when I bring it up and say, “Yes, yes, we know, Mom.”

What does yours look like? And who have you told?

Completely bizarre to me is this: A recent Pew Research Center study on end-of life issues found that less than half of people over 75 had given much thought to the end of their lives, and incredibly, only 22% of them had written down or talked to someone about medical treatment at the end of their lives. However, the same Pew study finds a sharp increase in all adults putting something in writing (six in 10 of us) and thinking through our deaths, which indicates that percentage-wise, it’s the slightly younger folks who are preparing now. Attitudes are shifting, too: an unprecedented 66% of us now think there are instances in which doctors should allow a patient to die (instead of doing everything possible to save a patient’s life). A tipping point, it seems to me, has been reached—and we’d like a more mindful, respectful death. We are reclaiming the ancient art of dying.

But there is much to be done. Indeed, though our culture is death-avoidant and confused, I am heartened by the increasingly popular “Death Cafés” and new movements such as “Slow Medicine,” and I’m grateful for April 16, which is the day we should all admit that our life belongs to us, but it also belongs to everyone we interact with, and we owe them the gift of directing an honest gaze at our demise.

But best of all, spending some time now might leave us thinking of death as more of a friend rather than a spooky stranger. With our newfound peace, we can then spend our precious time really living.

Complete Article HERE!

End-of-life doulas prepare people for death in evolving role due to pandemic

By Christine McCarthy

In a field that is quickly growing but evolving due to the coronavirus pandemic, death doulas are providing comfort for the terminally ill and helping their family members grieve.

Similar to how a birth doula supports an expectant mother through the process of bringing a life into the world, an end-of-life doula – a trained, non-medical professional – guides a person through the final stages of life.

Mariah Riess, a certified end-of-life doula, often receives calls from new clients following terminal diagnoses.

Riess helps them navigate all aspects of death, from making legal, financial and funeral arrangements to deciding where and how they want to die.

“Death, in some ways, it’s the biggest event in our lives, and for many it’s the most disappointing to think about or have to experience,” Riess said from her Dover home. “There’s maybe a way to bring grace to this process and also information and understanding to this process of dying.”

Riess’s goal is to eliminate the stress and fear of one’s own mortality, providing comfort before and during their death and supporting their grieving loved ones after. Her work with each client can span days, months or years.

Riess believes the isolation many are experiencing during the pandemic has led clients to services like hers.

“I’ve seen quite an uptick in my practice, because I’m not sure there are places where people can talk about what’s going on with them when they’re facing the death of another or their own imminent demise, decline, diagnosis,” Riess said.

Terry and Melinda Sortwell began working with Riess last June. The Maine couple had been referred to Riess, who also provides nutrition and wellness services, as Terry struggled with digestive issues and gaining weight.

Terry, now 71, had been diagnosed with bile duct cancer in 2018 and had undergone extensive surgery and six months of chemotherapy before another cancer scare.

While further testing showed the cancer had not returned, his wife, Melinda, 66, experienced her own cancer scare. She, too, would receive good news, but considering their own mortality had been eye-opening.

“The fact is, we’re all going to die,” Terry said by Zoom. “We all think as human beings, ‘Oh, no. It’s not going to happen to me now. It’s not going to happen to me.’ Everything’s fine until it isn’t, and everything comes to a screeching stop. So you might as well plan for it.”

When the couple, married for 45 years this September, discovered Riess provided end-of-life services, they began working with her regularly, meeting virtually.

“It’s wonderful to think you can do it all yourself. But emotionally, there’s so much going on when you think you’re leaving your body, or you’re letting people down,” Melinda said. “The last thing you need to think about – or all the things you haven’t thought about – paperwork-wise and what are your desires and wants at the end of your life.”

Between Riess’s appointments, she asks her clients to complete assignments. For Terry, she instructed him to visit a hospice center so he can make his own plan for how he wants to spend his final days.

“[Riess’s] field and what she does, it takes all the worry away – a lot of the worry away,” Melinda said. “This is an important step and important support system for us and our family.”

Interest in end-of-life services has been increasing, even as doula work evolves due to the COVID-19 pandemic, according to Henry Fersko-Weiss, co-founder and executive director of the International End of Life Doula Association (INELDA), a non-profit that trains and certifies death doulas as private practitioners.

“I see people much more open to talking about death and dying,” Fersko-Weiss said by phone Wednesday. “The pandemic has made us all more conscious, aware and engaged with facing dying. That’s something that’s happening universally.”

Some death doulas have temporarily stopped providing services during the pandemic, while others, like Riess, have converted in-person meetings to online or telephone appointments.

While she already serves clients across the country remotely, Riess will soon resume appointments at her home with local clients, as she has now been fully vaccinated.

“Dying is a very intimate experience. So, I know it’s much richer and better if a doula can be physically present,” Fersko-Weiss said. “But it’s better to have a doula virtually than not to have a doula at all.”

While Terry undergoes scans and bloodwork every few months, he and his wife are stable and feeling well. Still, the couple feels their sessions with Riess are important, to prepare for their final days, whenever that may be.

“The point is to have these conversations when you’re feeling good,” Terry said, “so that you’re able to make decisions and talk to our children and think about things rather than try and solve these problems or make these decisions when you’re in a crisis mode.”

For Riess, her job is more of a calling – the most fulfilling role she could imagine.

“It’s such a privilege for me to be in the lives of the people that I’m in the lives of and to see the courage and the love,” Riess said. “And the opportunity for me to be involved with these families at the most personal, really profound time of life – I look forward to going to the end of my own life doing this.”

Complete Article HERE!

Death as Something We Make

An anthropologist dives deeply into how “medical aid-in-dying” is transforming the ethics and aesthetics of death.

By

Renee (a pseudonym) closed her eyes, lay her head in her brother’s arms, and gently drew her last breath. Minutes before, she had chugged a bitter concoction of Seconal and juice, while the loved ones encircling her offered their final blessings and softly sang her out of this world.

This carefully choreographed scene was exactly the way Renee had imagined her death after months of careful planning. She had endured a grueling course of cancer treatments several years prior. When the cancer recurred and metastasized, she was quickly drawn to the possibility of a medically assisted death. As a resident of Vermont, she became one of the roughly 1 in 5 Americans legally permitted to end their lives when faced with a terminal illness.

Medical aid-in-dying (MAID), currently legal in 10 U.S. jurisdictions, with another poised to likely follow soon, authorizes physicians to prescribe a lethal dose of medication to a terminally ill, mentally competent adult patient. With legislative safeguards in place to protect against abuse, and many physicians reluctant to participate, the process is neither easy nor guaranteed. But the very prospect of MAID is changing the way people in the U.S. and elsewhere in the world think about death.

As the pandemic has made avoiding the subject of death all but impossible, planning for death has taken on new urgency. Palliative care experts have urged people to document end-of-life wishes in advance directives, while end-of-life startups have tapped into the market potential of death. These developments align with what has long been a strong motivation for terminally ill people seeking MAID: to control and carefully craft the scene of death.

I am a medical anthropologist who has spent the past five years studying the implementation of Vermont’s 2013 Patient Choice and Control at End of Life Act. I interviewed over 140 patients, health care providers, caregivers, activists, and legislators to collect their stories and experiences. I also attended medical conferences and advocacy events where MAID was being discussed.

While I learned a lot about what drives people to MAID, I was particularly fascinated by what MAID does to death. The option transforms death from an object of dread to an anticipated occasion that may be painstakingly planned, staged, and produced. The theatrical imagery is intentional: An assisted death is an event that one scripts, a matter of careful timing, with a well-designed set and the right supporting cast. Through this process, death becomes not just something that happens but also something that is made.

The four friends I interviewed about Renee’s life and death all used similar words to describe her: independent, stubborn, strong-willed, even a bit of a curmudgeon. She loved being a crone, what some people define as a woman who has gone through menopause and stands in her power and wisdom. She never married nor had a significant romantic relationship, which was a source of sorrow for her. Still, her life was rich with friendships, meaningful work as an artist and teacher, and a devoted spiritual practice.

Terminally ill patients who choose medical aid-in-dying can plan when and how they prefer to die.

Renee was also dignified. A friend recounted how, during a spiritual retreat, a group was doing a silent meditation while walking outdoors. They stumbled upon Renee, up to her breasts in snow, waving calmly.

“She had fallen through a spot and was literally stuck in the snow up to her chest, but she was just like, ‘Um, excuse me,’” her friend recounted. “Where other people might be thrashing around or screaming for help, she was just like, ‘Hello.’ And that’s a really good way of describing her.”

As her cancer progressed, Renee was in constant pain. She rejected strong pain medications to avoid a foggy brain. Fluid built up in her chest, affecting her breathing. An intensely private and independent person, she did not want to depend on others for care at the end of life. And she did not want to be stuck in her body longer than it could be useful to her.

Renee loved her life, but she knew where her illness was headed. When she reached the limits of what she thought she could bear, MAID offered an enticing pathway out.

Historically, humans have largely been passive witnesses to their own deaths. Since the middle of the 20th century, however, technological developments in medicine have offered increasing possibilities for human control over one’s own death. These changes have led to heated debates about what counts as death and altered the kind of event we take death to be.

MAID renders not only the time of death but also the broader landscape of death open to human control. MAID allows terminally ill patients to choreograph their own deaths, deciding not only when but where and how and with whom. Part of the appeal is that one must go on living right up until the moment of death. It takes work to engage in all the planning; it keeps one vibrant and busy. There are people to call, papers to file, and scenes to set. Making death turns dying into an active extension of life.

Staging death in this way also allows the dying person to sidestep the messiness of death—the bodily fluids and decay—what the sociologist Julia Lawton has called the “dirtiness” of death. MAID makes it possible to attempt a calm, orderly, sanitized death. Some deliberately empty their bladder or bowels in advance, or plan to wear diapers. A “good death,” from this perspective, has not only an ethical but also an aesthetic quality.

Of course, this sort of staging is not without controversy. For some, it represents unwelcome interference with God’s plans. For people like Renee, however, it infuses one’s death with personal meaning and control.

Renee set the weekend for her death to avoid another hospitalization to drain fluid from her chest, a procedure she had undergone several times. Determined not to face hospitalization again, she bought a plane ticket for a spiritual mentor who lived in another state and invited a small group of family and friends to gather at her home.

It was an emotional but humor-filled weekend. “She didn’t want us to be all sad and heavy about it. She wanted to have a good time,” one friend recalled.

Medical aid-in-dying transforms death from an object of dread to an anticipated occasion that may be planned, staged, and produced.

Her friends were amused by the incongruously frenetic pace of her dying. All weekend, Renee shuffled around the house, shredding papers and making lists and phone calls. Her friends made up a playful song, “Follow the Little Blue Hose,” set to the tune of “Follow the Yellow Brick Road” from the film The Wizard of Oz, which they sang as they watched her scurry around trailed by an oxygen tank.

Renee was very organized about dying. She had thought about which people she wanted to inherit her dog, her journals, and her art. She ordered dry ice for her in-home wake and wrote a check to the crematorium and clipped it to the relevant paperwork. She even finished her taxes. She left detailed instructions for her postmortem care and funeral in a file to be opened after her death. A pine casket, constructed by a friend, had been sitting in her shed for months. The only matter left to attend to was her actual death.

Renee had never been certain she would take the lethal dose of Seconal. (In Oregon, only about 64 percent of people who obtain the medication go on to ingest it.) Initially, she hoped she might avoid it by willing herself to die. A natural death was more aligned with her worldview and spiritual practice. Her friends performed an “unbinding” ceremony in an effort to untether her soul from her body.

But she couldn’t make herself go. And if she didn’t die, her friends would need to go home, and she would be expected at the hospital on Tuesday, which had become, for her, a fate worse than death.

When Renee went to bed Saturday night, she had not yet made up her mind about what she would do. During the night, her intense coughing echoed throughout the house. Finally, she got up at 4 a.m., grabbed her laptop, and went back to her bedroom to pen love letters to friends. At 6 a.m., she emerged and announced she was ready to go.

While Renee said her goodbyes, four friends sat in a circle and prepared the medication with a makeshift ritual ceremony. Using beautiful pottery and sacred chalices, they emptied 100 capsules—the number of Seconal pills required to form a lethal dose—singing while they worked, and carefully mixed the powder with juice. They all piled on the couch for a final photo shoot. Renee laid across their laps in a favorite leopard print and purple velvet outfit.

Then, in her signature no-nonsense style, Renee got into bed and started directing everyone on where to stand. They surrounded her as she drank, chanting softly. Ten minutes later, she was dead.

Some health care providers I’ve talked to worry over the portrayal of deaths like Renee’s. There is a danger in suggesting that death should be clean and orderly, they rightfully suggest, when most deaths are far from it. Media accounts of glamorized assisted deaths may set up unrealistic expectations for what death should look like.

And some MAID deaths fail to follow the plan, as I learned from my research. There was the woman who took hours and hours to die, scaring her children when she repeatedly turned blue, then miraculously started breathing again. There was also the man who swallowed a dose of morphine that “should have killed a grizzly bear,” according to his physician, yet who nevertheless awoke the next morning.

In my experience, however, most of the bereaved remain deeply satisfied with their loved one’s medically assisted death. They tend to view supporting a loved one’s wishes for MAID as an ultimate form of care and being by their side as a consummate honor.

After she died, Renee’s friends quickly got to work implementing her plans. They called the hospice nurse to pronounce her dead. They notified people, following a list Renee had annotated with her characteristic wit: those to be nice to, those she really didn’t give a shit about but should probably know that she had died. Three women washed and anointed her body with meticulous care. The coffin was set up in the living room for a three-day in-home wake. Renee’s funeral was held in the same room, then a friend drove her body to the crematorium, followed by a caravan of other friends.

Hilarity frequently punctured the somber mood. “It was just like a comedy of errors,” a friend recalled. “The dry ice all melted, like a day or three days earlier than it should have, the casket almost didn’t fit in the car. … Right until the last minute, we were like, ‘Thanks, Renee,’ you know, like, ‘good planning on that one.’”

By choosing an assisted death, a terminally ill person can make their passing into an aesthetic and meaningful experience—for themselves and for loved ones.

Despite these hiccups, the friends who participated in Renee’s death felt extraordinarily honored to be present. They saw her final act as brave and dignified, very much aligned with the way she lived her life. “It takes personality, at least that’s my impression,” one friend said. “It’s hugely courageous to go, ‘All right, in this minute, I’m gonna be here, and the next minute, I’m not. Here I go to make that happen. I’m gonna make that happen right now.’”

This comment captures an important feature of MAID: For observers, there is something startling about going from being fully alive one minute, and then, suddenly, willfully dead. Aside from suicide, this is not how we’re taught our own deaths happen.

But MAID is shifting the stakes of what we think death might be—transforming death into something we make.

Complete Article HERE!

When Patients Choose to End Their Lives

For some, the decision to die is more complicated than a wish to reduce pain.

By Jane E. Brody

At a time when so many are dying against their will, it may seem out of sync to discuss the option of having a doctor help people end their lives when they face intolerable suffering that no treatment can relieve.

It’s less a question of uncontrollable physical pain, which prompts only a minority of requests for medical aid in dying, than it is a loss of autonomy, a loss of dignity, a loss of quality of life and an inability to engage in what makes people’s lives meaningful.

Intractable suffering is defined by patients, not doctors. Patients who choose medical aid in dying want to control when they die and die peacefully, remaining conscious almost to the very end, surrounded by loved ones and able to say goodbye.

Currently, nine states and the District of Columbia allow doctors to help patients who meet well-defined criteria and are on the threshold of dying choose when and how to end their lives. The laws are modeled after the first Death with Dignity Act, passed in Oregon in 1997.

A similar law has been introduced repeatedly, and again this January, in New York. Last year, Maryland came within one vote of joining states that permit medical aid in dying. Diane Rehm, the retired National Public Radio talk show host, says in a new film she created on the subject, “Each of us is just one bad death away from supporting these laws.”

Most people who seek medical aid in dying would prefer to live but have an illness that has in effect stripped their lives of meaning. Though often — and, proponents say, unfortunately — described as “assisted suicide,” the laws hardly give carte blanche for doctors to give people medication that would end their lives quickly and painlessly. The patient has to be terminally ill (usually with a life expectancy of less than six months), professionally certified as of sound mind, and able to self-administer the lethal medication without assistance. That can leave out people with advanced dementia or, in some cases, people with severe physical disabilities like those with amyotrophic lateral sclerosis (A.L.S., or Lou Gehrig’s disease).

A desire to broaden access to medical aid in dying prompted Ms. Rehm to create the film “When My Time Comes” to air on public television starting April 8. (A free livestream of the film preview and discussion will be available on April 8, at 12:45 p.m. Eastern, at weta.org/WhenMyTimeComesFilm.) The film follows the 2020 publication of Ms. Rehm’s book of the same title, subtitled “Conversations About Whether Those Who Are Dying Should Have the Right to Determine When Life Should End.” Both the book and film were inspired by the protracted death in 2014 from Parkinson’s disease of John Rehm, her first husband, to whom she was married for 54 years.

Mr. Rehm, then living in Maryland, could no longer stand, feed or toilet himself, but his doctors could not legally grant his plea to help him die quickly. Instead, the only recourse he was given was to refuse all food, liquid and medication, which ended his life 10 days later.

This is still the only option doctors can legally “prescribe” for the overwhelming majority of Americans who live in the 41 states that have yet to pass a medical aid-in-dying law. The approach does indeed work, but it’s not an acceptable choice for many dying patients and their families.

Ms. Rehm said her goal is that no patient should have to suffer the indignity her husband experienced at the end of his life. She described his death as “excruciating to witness,” even though after about two days the absence of food and water is usually quite tolerable for the patient.

Dr. Jessica Nutik Zitter, a palliative care physician at Highland Hospital in Oakland, Calif., said in an interview, “The concept of medical aid in dying is gaining acceptance, but it takes a while for people to be comfortable with it. Doctors are trained to just keep adding technology to patient care regardless of the outcome, and withdrawing technology is anathema to what we’re taught.”

As a result, doctors may convince dying patients and their families to accept treatments “that result in terrible suffering,” said Dr. Zitter, author of the book “Extreme Measures: Finding a Better Path to the End of Life.” In her experience, a fear of losing control is the main reason patients request medical aid in dying, but when they have access to good palliative care, that fear often dissipates.

Only a third of patients who qualify for medical aid in dying actually use the life-ending drugs they get, she said, explaining that once given the option, they regain a sense of autonomy and no longer fear losing control. In a study of 3,368 prescriptions for lethal medications written under the laws in Oregon and Washington state, the most common reasons for pursuing medical aid in dying were loss of autonomy (87.4 percent); impaired quality of life (86.1 percent), and loss of dignity (68.6 percent).

Of course, many doctors consider medical aid in dying contrary to their training, religious beliefs or philosophy of life. Dr. Joanne Lynn, a geriatrician in Washington, D.C., who is not a supporter, said the emphasis should be on providing better care for people who are very sick, disabled or elderly.

“We should resist medical aid in dying until we can offer a real choice of a well-supported, meaningful and comfortable existence to people who would have chosen a medically assisted death,” Dr. Lynn said. “There’s currently no strong push for decency in long-term care. It’s not a real choice if a person’s alternative is living in misery or impoverishing the family.”

Barbara Coombs Lee, president emerita of Compassion & Choices, a nonprofit organization in Portland, Ore., that seeks to expand end-of-life options, said, “The core principle of medical aid in dying is self-determination for someone who is terminally ill.”

Still, Ms. Lee, the author of “Finish Strong: Putting Your Priorities First at Life’s End,” said that there are options for the majority of dying patients who still lack access to an aid-in-dying law. In addition to voluntarily refusing to eat and drink, everyone has the right to create an advance directive that stipulates the medical circumstances under which they would want no further treatment.

For example, people in the early stages of Alzheimer’s disease could specify that when they reach a certain stage — perhaps when they no longer know who they are or recognize close relatives — they do not want to be treated if they develop a life-threatening infection.

Leaving such instructions when a person is still able to give them “is a gift to the family, relieving loved ones of uncertainty,” Ms. Lee said. She suggested consulting the website compassionandchoices.org for tools that can help families who want to plan ahead.

Complete Article HERE!

Diane Rehm tackles ‘death with dignity’ again, this time in a new documentary

“I’ve . . . learned that pain is number 6 on the list of reasons why people want medical aid in dying,” former NPR talk show host Diane Rehm says. “The loss of joy in life is number one.”

By Katherine Ellison

John Rehm’s death changed Diane Rehm’s life.

Ten years after John was diagnosed with Parkinson’s disease, he couldn’t stand, walk, eat or go to the toilet by himself. Outraged because the law forbade his doctor to help hasten his death, he resolved to stop eating and drinking.

Diane, the celebrated NPR talk show host and John’s wife of 54 years, kept vigil for the next 10 days. Just after 2 a.m. on June 23, 2014 — a few hours before John died — she took out her iPad and typed the first sentences of a passionate argument for medical aid in dying.

“In most of America, lawmakers and the church are deciding this issue for other people,” she says. “People they’ve never met. People whose suffering they have no way of understanding.”

In 2016, Diane retired from NPR station WAMU after working there for more than 30 years. Since then, she has championed what she and other advocates call “death with dignity.” On Wednesday, PBS will broadcast her new documentary, “When My Time Comes.”

The one-hour program and a similarly titled book published last year describe the death of her husband, a former lawyer for the Kennedy and Johnson administrations, and the perspectives of politicians, doctors and patients about the movement that has led to new laws in nine states and the District.

Diane remarried in 2017, at age 81, to retired Lutheran minister and therapist John Hagedorn. Since leaving WAMU, she has been producing a twice-weekly podcast and a monthly book club. She spoke to The Washington Post in an hour-long telephone conversation that has been edited for length and clarity.

Q: Why did your husband want to die?

A: It wasn’t so much that he was in pain. He said he had lost his sense of dignity. He was a very proud man, and he felt that if he continued to live he was going to lose even more dignity. He still had his sharp mind, and he knew exactly what he was doing and saying. Our daughter said, “Dad, we can keep you comfortable,” and he said, “Dammit, I don’t want comfort.”

I’ve since learned that pain is number 6 on the list of reasons why people want medical aid in dying. The loss of joy in life is number one. The morning after John had that conversation with his doctor, I remember walking in to see him and saying: “Sweetheart, you look wonderful! Your face is rosy and your eyes are sparkling!” He said: “I have begun the journey.”

Q: Do you worry that these laws allowing doctors to prescribe medications for the terminally ill so they can die peacefully could be a slippery slope toward making suicide more acceptable?

A: There’s a huge difference between medical aid in dying and assisted suicide. People who commit suicide want to die. In the film, I speak with a 37-year-old mother of two with breast cancer that had spread throughout her body. She said “If I had my druthers, I’d live until I’m 90. But I know I can’t, and I don’t want my 13-year-old son to see me suffer.” That’s the difference between medical aid in dying and suicide. One is a choice. The other is there is no choice; she knows she’s going to die and she wants to die peacefully and in a way that doesn’t leave her children with memories of her in agony.

Q: What limits, if any, protect people who might be pressured to end their lives early?

A: These laws are very specific, modeled on the first one, passed in Oregon in 1997. You must be within six months of death. You must be able to self-administer medication. You therefore cannot wait until your swallowing mechanism no longer operates and you also cannot wait until you can no longer say that you’re ready. In some states, you must be interviewed by a psychiatrist, alone, so that it’s clear that no one else is making this decision.

Q: What surprised you the most as you did your research?

A: What really shocks me is the fact that the Roman Catholic Church has been the most well-funded and outspoken opponent of medical aid in dying. A referendum in Massachusetts found some 70 percent of those polled said they were in favor. But then the church put $5 million into defeating that proposal.

Now, if your faith says to you, “I want God to decide when my life is going to end,” I’m in support of that. I’m an active Episcopalian myself.

If that’s what you want for yourself, I’m happy to support you along the way, and if you want everything medical aid can offer, then of course that’s what you should have. But I also believe that for people who’ve reached the end of a long, hard illness and are in their final six months before death, well, they should have a choice.

Q: What else do you think is preventing these laws from passing in more states?

A: Denial is a big problem. Talking about death is so taboo. You see me in the film standing in the church, asking how many people in the congregation plan not to die? Everybody is uncomfortable with the idea of death, so they don’t want to talk about it. But then what happens when your mother or father is dying and you haven’t spoken to them in advance? How are you to know what they want? Do they want to be hooked up to every possible machine at the end?

People also don’t know how and where the laws are changing. We now have medical aid in dying in Washington, D.C., but so many people do not know it. And 10 states are currently debating it, including New York and Connecticut. I am very hopeful this film will get more people talking about it. I also think covid has gotten people thinking more about how close death is for all of us.

As soon as the virus hit, I called my own physician and said I do not wish to go to a hospital if I come down with covid. I will not be put on a ventilator. She said “If that is your wish, I will make a note of it.” I switched doctors once we began making this film and I realized how few doctors are willing to help people who are ready to make up their minds.

Q: How did your bosses at NPR react to your outspokenness on such a controversial issue?

A: In 2016, there was a story about my advocacy in The Washington Post. I was planning then to do several dinners for Compassion & Choices, [ a U.S. nonprofit group working to improve patients’ rights]. NPR called and took me to task. Then 10 of the top executives at NPR came to WAMU and we sat in the conference room with my manager, and he was so worried I was going to stand up and say I quit if they told me I couldn’t do those dinners. I told them I was sorry but I wasn’t backing down. I wasn’t being paid to speak, but it was very important to me. Eventually they compromised and said do the three dinners you committed to do but if you speak out on this again on the air you will have to say you’re an advocate for medical aid in dying.

Q: Was this tension a factor in your decision to retire?

A: Absolutely not. Not at all. I was going to be 80 and I honestly feel that when those of us who’ve had such long and wonderful careers reach a certain point it’s no longer fair to just keep going because we have a big audience and people want us to keep going. There are young, talented people who ought to have a right to move into those chairs.

Q: Your documentary shows you with a young man videotaping you expressing your wishes for how you want to die. What are you telling him?

A: That’s my grandson Benjamin. He was 19 at the time. I’m telling him that should I somehow become an individual who experiences Alzheimer’s, I need you to tell me early on that you are seeing this. If that does happen, I will begin making my plans to end my life before I am no longer able to do so. Obviously, this is not allowed under any current Medical Aid in Dying laws around the country, so I will have to plan to take matters into my own hands.

When my time comes, I want all of my family with me: my husband, son, his wife, my daughter, her husband, their children and my dearest friends. I want us all to be sipping champagne and telling good stories about the times we’ve shared. And when the moment arrives, I want to go into my own bedroom with my children and my husband and I want to be able to go peacefully with the medications.

Complete Article HERE!

More pregnant women died and stillbirths increased steeply during the pandemic, studies show.

A nurse helping a pregnant woman at a hospital in Paris last November.

By Apoorva Mandavilli

More pregnant women died, experienced complications or delivered stillborn babies during the pandemic than in previous years, according to an analysis of 40 studies in 17 countries published on Wednesday in the journal Lancet Global Health.

Pregnant women face a heightened risk of severe illness and death if infected with the coronavirus. But the researchers, in Turkey and the United Kingdom, wanted to assess collateral damage from the pandemic on pregnancy and delivery, and so excluded from their analysis those studies that focused only on pregnant women who were infected.

Reviewing data on more than six million pregnancies, the investigators found evidence that disruptions to health care systems and patients’ fear of becoming infected at clinics may have led to avoidable deaths of mothers and babies, especially in low- and middle-income countries.

Data from a dozen studies showed that the chances of a stillbirth increased by 28 percent. And the risk of women dying while pregnant or during childbirth increased by more than a third in two countries: Mexico and India. A subset of studies that assessed mental health showed that postpartum depression and anxiety were also heightened during the pandemic.

Nearly six times as many women needed surgery for ectopic pregnancies — in which a fertilized egg grows outside the uterus — during the pandemic than before. Ectopic pregnancies can be treated with medications if detected early, so the results suggest that the surgeries may have resulted from delays in care.

The analysis did not find differences in other conditions associated with pregnancy, like gestational diabetes or high blood pressure, or in the rates of cesarean sections or induced labor.

The rates of preterm birth also did not change significantly during the pandemic in low- and middle-income countries. But in high-income countries, preterm births fell by nearly 10 percent.

The drop may be a result of changes in health care delivery and in pregnant women’s behavior during the pandemic, the researchers said, indicating that the pandemic has exacerbated disparities between low- and high-income countries.

Complete Article HERE!