Category: Talking about death

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Coronavirus Disrupts Hard Decisions About End-Of-Life Treatment

The coronavirus means more people are dying alone in ICUs. Families are having to make abrupt decisions at a distance about terminal care. Palliative care specialists try to adapt.

By Will Stone

TRANSCRIPT

Palliative care is a specialized branch of medicine that focuses on relieving pain and symptoms in seriously ill patients and those who are dying. Will Stone reports that the coronavirus pandemic has disrupted this kind of care at a time when families are facing abrupt decisions about end-of-life treatment.

WILL STONE, BYLINE: Before coronavirus, Darrell Owens rarely worked in the emergency room. Now he’s there daily. Owens is a nurse practitioner and directs the palliative care program at a hospital run by the University of Washington in Seattle. Owens used to visit with families in quiet conference rooms or at the bedside.

DARRELL OWENS: Cancer patients, stroke – regular routine palliative care patients.

STONE: Back then, he could grab a chair and scoot up right next to the patient and take his time. Palliative medicine focuses on patients’ quality of life and relieving symptoms of serious illness, like pain and anxiety.

OWENS: We are obligated – as much as we are to try to save people’s lives, we are as obligated to save their deaths.

STONE: Across the country, coronavirus has disrupted this sacred task. Owens is adapting. The ER now calls him a lot. He sees every coronavirus patient who’s older or at risk for complications.

OWENS: The conversations are more abbreviated than they would be because, one, you’re behind a mask. You’re in a loud room, completely gowned up, and so you want to limit your exposure.

STONE: All that makes it harder to talk through a patient’s chance of survival and big questions, like do you want to be resuscitated? Do you want to be put on a ventilator? Because of the pandemic, relatives are usually barred from the hospital.

OWENS: You cannot underestimate the stress on family members who cannot visit and now, in a crisis mode, trying to talk this through over the phone.

STONE: It’s this painful new reality that Rich and Rob Mar and their sister Angie Okumoto faced when they lost both of their parents to coronavirus last month. Their mother Elizabeth was in her early 70s, still running a Hawaiian restaurant with her daughter. Rich says she liked to give out hugs.

RICH MAR: One of those people that just quickly made friends and made an impression on everyone.

STONE: They say their mother was in good health before contracting the coronavirus. They brought her to the ER when her breathing got worse. She was asked, did she want to be resuscitated, if necessary, and put on life support? Angie says they didn’t hesitate to say yes.

ANGIE OKUMOTO: You know, yeah, of course. We just had no idea what this virus was going to do.

STONE: They just assumed she would pull through.

MAR: I didn’t know that was the last time I was ever going to talk with her.

STONE: Before they knew it, she was sent to the ICU.

OKUMOTO: For 14 days on the ventilator, she was alone.

MAR: Right. Right.

OKUMOTO: Alone for 14 days.

MAR: That’s the part that hurts the most and what will haunt me forever.

STONE: Near the end, they did get to see her, but she was sedated.

MAR: We were all gowned up. And so we’re, like, trying to talk to her and let her hear our voices.

STONE: Meanwhile, their father Robert was also getting sick. He was 78, an engineer.

MAR: My dad was more of the analytical type. He can give you a practical solution for everything.

STONE: They took him to the same hospital as his wife, where he made his wishes very clear.

OKUMOTO: My dad, from Day 1, he said he did not want to be on life support.

STONE: So Darrell Owens, the palliative care director, started managing Robert’s care.

MAR: He was super compassionate, telling us the facts and being straightforward with us.

STONE: Because Robert had decided against aggressive treatment, he was never moved to the ICU. He was able to have a few visits with his kids, and he wasn’t on a ventilator, so they could talk to him and text. Their father died on March 27, not long after their mother.

MAR: The way he wanted to.

OKUMOTO: With dignity.

MAR: With dignity, yeah. That was very important to him.

STONE: The family is grateful to the nurses and doctors. Still, they grieve those visits they never had. Angie never got to say goodbye before her mom was intubated.

OKUMOTO: If I got to be bedside to my mom earlier, holding her hand and just being present – and that we’ll never know, right? Like, that’s what sucks.

STONE: It’s an experience of death that more families are coming to know – loved ones dying alone and out of reach from a new and poorly understood virus. In New York City, Dr. Diane Meier works in palliative care at Mt. Sinai School of Medicine. During the worst of the surge, the hospital set up a palliative care hotline for families.

DIANE MEIER: So this is completely unprecedented. All the cues you normally get with face-to-face are very hard to pick up over the phone.

STONE: Mt. Sinai doctors are even calling elderly patients at home to learn their wishes just in case they do get infected.

MEIER: Many of our patients had been thinking about it a lot, incredibly relieved that we had reached out to them.

STONE: Meier says it’s a new way of doing palliative care when faced with a virus that moves so fast. For NPR News, I’m Will Stone in Seattle.

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Do You Want to Die in an I.C.U.?

Pandemic Makes Question All Too Real

Cheryl Goldman of Valley Stream, N.Y., has emphysema and relies on supplemental oxygen. She told her son that if she contracted Covid-19 and needed a ventilator that she would refuse treatment.

Sobering statistics for older patients sharpen the need to draw up advanced directives for treatment and share them with their families.

By Paula Span

Earlier this month, Cheryl Goldman, a retired high school teacher living on Long Island, called her son, Edo Banach, in Maryland. It seemed a routine chat until Ms. Goldman announced that if she became ill with Covid-19, she would decline a ventilator.

“I’m her health care proxy,” said Mr. Banach, who happens to be the president of the National Hospice and Palliative Care Organization. “Her perspective was, what’s the point? In all likelihood it’s not going to help, and she’d be taking a vent away from someone else.”

At 69, Ms. Goldman has emphysema and already relies on supplemental oxygen. She told me that she’d been following the news, including the grim statistics for older adults with chronic illnesses who require ventilators during extended stays in intensive care.

In such cases, “the number who leave the hospital is low, and it’s lower for someone with health problems like me,” she said. She also feared being separated from her family during a hospitalization and wanted, instead, to remain at home with hospice care. “It’s a pragmatic decision.”

Mr. Banach, leading the response of about a thousand hospices nationwide that are facing heightened demand and bracing for worse, appreciated her forthrightness. “It’s the kind of conversation everyone should be having with their loved ones,” he said.

In the best of times, it can be tough to get Americans to discuss and document their end-of-life wishes. Depending on the study, a third to two-thirds of adults haven’t drafted advance directives, the documents that outline which medical treatments they would accept or refuse and designate a decision maker to act on their behalf if they’re incapacitated.

“People think, I’ll deal with it in the future,” Mr. Banach said. But for thousands of older adults, the future may have arrived.

To date, there’s no clear evidence that older people are more apt to contract the new coronavirus, said Dr. Douglas White, a critical care specialist and the director of the Program on Ethics and Decision Making at the University of Pittsburgh School of Medicine.

“What we do know is that older individuals are more likely to experience very severe disease if they do become infected,” he said. “The data are sobering.”

That’s partly because most older adults have chronic conditions — heart or lung disease, diabetes, high blood pressure — known to intensify the virus’s effects. And they have less physiologic reserve — “less ability to rebound from an overwhelming illness,” Dr. White explained.

When seniors and their families engage in what’s called advance-care planning, they often focus on the D.N.R. question — whether patients would want to be resuscitated after cardiac arrest.

But because Covid-19 is a respiratory disease, the more pressing question will likely be whether a hospitalized patient who’s seriously ill will accept intubation and ventilation.

That initially involves a tube inserted down the throat, connected to a ventilator that pushes air into the lungs. When a patient has spent two weeks on a vent, doctors commonly perform a tracheostomy, creating a surgical opening in the windpipe that replaces the swallowed tube.

Long before the virus erupted, among people over 66 who spent 14 days in an I.C.U. on a ventilator, 40 percent died within a year of discharge. Now, “those numbers are too rosy for Covid,” Dr. White said, citing findings from Italy and Britain, where more than half of older patients on prolonged ventilation died.

A just-published JAMA article looked at coronavirus patients admitted to Northwell Health hospitals in and around New York City. Excluding those still hospitalized after the monthlong study, the mortality rate among patients over age 65 exceeded 26 percent, and almost all patients over 65 who needed mechanical ventilation during that period died.

That data can prompt frank exchanges. “If a patient is elderly and has significant medical issues, I’ll explain that a large proportion of people who become ill with Covid-19 and need a ventilator unfortunately will not survive,” said Dr. Kosha Thakore, the director of palliative care at Newton-Wellesley Hospital in Massachusetts.

Moreover, longevity is not the only priority, and sometimes not the primary one, for older people considering medical options. What will life look like if they do survive?

“After elderly people have been on a ventilator, they’ve often already developed physical debilitation, difficulty swallowing, bedsores,” Dr. Thakore explained. They frequently cycle in and out of hospitals with complications. Their deficits can be physical or cognitive or both, and are often permanent.

Even pre-Covid, after 14 days on a ventilator in an I.C.U., only about one in five older discharged patients went home. “The others end up in nursing homes,” Mr. Banach said. “Some may later go home, and some will die in the nursing home.”

Though older adults with Covid-19 may not require hospitalization or ventilation, the decisions they face if they do highlight the importance of reviewing advance directives.

A new study in JAMA Internal Medicine questioned 180 patients over age 60 with serious illnesses; most said they would trade a year of life if that meant they could avoid dying in an I.C.U. on life support.

But that kind of aggressive care is exactly what they might receive. “If you don’t let the system know your wishes, the system takes over,” Mr. Banach pointed out. Family members can feel lingering trauma if they’re forced to make life-or-death decisions for loved ones who never discussed what they wanted.

“Many older patients we’ve encountered with Covid-19 have opted not to undergo ventilation and an I.C.U.,” Dr. White said. “No one should impose that on a patient, though if there’s true scarcity, that may arise. But patients might choose it for themselves.”

If older people have paperwork stashed in a drawer or safe, now is the time to unearth it and see if their instructions still reflect their values. If so, scan the document and send it to family members and doctors, Mr. Banach advised.

But for those who never got around to drawing up advance directives, appointing a decision maker — and telling that person what’s acceptable and what’s not — is ultimately more crucial. In emergencies, doctors probably won’t flip through documents to learn patients’ wishes; they’ll ask family or friends.

Mr. Banach’s counsel: “Take out your phone and do a video selfie: ‘This is who I am. This is the date. This is what I want.’ Send it to your friends and relatives. That’s enough.”

Many hospitals and health systems have developed workarounds when documents require signatures or witnesses; some are also doing palliative-care visits via telemedicine.

Dr. Gregg VandeKieft, a palliative care specialist with Providence Health on the West Coast, recently spent half an hour on Zoom talking with a patient’s sons about her end-of-life care. Dr. VandeKieft and a nurse were in Olympia, Wash.; one son was in Alaska and two elsewhere in Washington. “It felt not all that different than if we’d been in the same room,” Dr. VandeKieft said.

The coronavirus pandemic may spur more such conversations. In Los Angeles recently, Brie Loskota and her husband contacted close family friends, a couple in their 70s, asking about their well-being, offering to FaceTime, and then inquired: “If you got sick, is there anything we should know?”

The older couple, one of whom has a neurodegenerative disease and has already experienced mechanical ventilation, responded that they both wanted to avoid hospitalization and to die at home.

“It was a relief to be told,” said Ms. Loskota. “It’s not less heartbreaking, but it lets us make a decision with them in mind. It led my husband and me to talk about it for ourselves.” They’re in their 40s and have not yet drafted advance directives.

Complete Article ↪HERE↩!

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Do I want a ventilator?

Coronavirus prompts more people to consider, or revisit, end-of-life care

As the coronavirus pandemic began, internal medicine residents at Massachusetts General Hospital filled out their health care proxy forms and urged the public to follow suit. They are, top row, Dr. Ashley Martinez, left, and Dr. Gabrielle K. Bromberg; bottom row, from left: Dr. Ryan Flanagan, Dr. Samuel D. Slavin, and Dr. Bradley J. Petek.

By Naomi Martin

The coronavirus pandemic has pushed the fact of human mortality to center stage, prompting scores of people, not just doctors, to consider or revisit their end-of-life wishes. Complicating matters, the pandemic has introduced ventilators — a life-support tool seldom discussed outside hospitals before the outbreak — into mainstream Americans’ worries.

Amid talk of hospitals rationing ventilators, some people are updating their living wills or proxies to say that they do want a ventilator to extend their lives, if necessary. Others, largely elderly people and those with serious health conditions, are making it clear that if their odds aren’t great, they wouldn’t want the machine to keep them alive.

“In the two-and-a-half years we’ve existed, we’ve never answered questions on ventilators, but now they’re pretty common,” said Renee Fry, cofounder of Gentreo, which offers low-cost estate planning.

It’s urgent that people clarify their wishes to family now, doctors say, because the coronavirus can progress quickly, making patients suddenly so sick that to stay alive, they must be put in a medically induced coma and on a ventilator.

In that moment, they may not have a chance — or be able — to fully consider the potential consequences such as brain and organ damage, or needing to live bed-bound with a feeding tube.

Most people who contract the coronavirus don’t become seriously ill, and only a small portion require intensive care. However, early data suggest that perhaps 50 percent to as many as 80 percent of coronavirus patients who are placed on ventilators don’t survive.

“The reality is even if we have enough ventilators, that’s not going to save most people,” Dr. Breanne Jacobs, an emergency room doctor and professor at George Washington University School of Medicine who wrote about the issue.

Most elderly people would prefer to pass away at home with family rather than alone in a hospital, she said, so “if they understand a ventilator is not going to miraculously get them back to where they were, a lot of people would probably change their mind about allowing doctors to do intubation.”

The crisis has prodded many people to take up the oft-deferred task of discussing end-of-life goals. Thousands have downloaded a new coronavirus-related guide from The Conversation Project, which helps people broach the uncomfortable topic.

Doctors advise against using medical terms, like ventilator, in documents, because that’s not helpful to clinicians aiming to follow someone’s overarching wishes. Instead, they say, people should focus on big-picture values.

“A lot of people say, ‘I don’t want to be intubated,’ but they mean they don’t want to be intubated for the rest of their lives,” said Suelin Chen, cofounder of Cake, which offers free end-of-life planning services. “If it were just to recover for a few days, they’d want that.”

Specialists say everyone over 18 should, at minimum, record their health care proxy, which in Massachusetts requires two witnesses. If that’s impossible during social distancing, people can complete a “trusted decision-maker” form, which is better than nothing.

And they should discuss key questions with their chosen person before an emergency, such as what makes life worth living, how much suffering are they willing to endure, and for what odds of success.

These should be ongoing conversations, as people’s wishes change with age and health status, they said.

“This isn’t just doom and gloom — it’s how do you want to live your life all the way through the end?” said Kate DeBartolo, senior director at The Conversation Project.

The downsides of inaction can be high. Someone may receive procedures they don’t want, as hospitals can be obligated to try to keep someone’s heart beating, regardless of whether their brain is alive. Without clarity, family members may disagree over stopping life support, prompting infighting and guilt. Planning reduces depression in grieving relatives, a 2010 study found.

In some instances, family members may have to go to court to take a loved one off life support.

“With my mom, I always say it was the greatest gift that she gave us,” said Patty Webster, 50, a Conversation Project community engagement leader, whose mother, a hospital chaplain, made her wishes so clear that when she suffered two strokes, her family all agreed when the heart-wrenching time came to stop prolonging her life.

“She had an end-of-life that she wanted,” Webster said. “She had friends and family by her side, laughing and crying, together with her when she took her last breath.”

Amid coronavirus, Webster revisited the topic with her family. She shared an article by a doctor about the damage that ventilation can cause. Afterward, her in-laws, in their 80s, emailed to say they wanted to live to 110, but only if “cognizant, thinking, and communicative,” and likely wouldn’t want ventilators.

Webster and her husband, meanwhile, would be willing to try temporary ventilator treatment for a chance to remain in the lives of their children, 18 and 20, in an active, meaningful way.

People who have started end-of-life planning during the crisis say it offers a measure of control. That doesn’t mean thinking about death gets any easier.

“It’s terrifying to think about when you flat-line, that’s the end,” said Chris Haynes, 48, a South End restaurant publicist who recently crafted his will, but can’t bring himself to envision his end-of-life care. “It just shakes you to your core.”

Pushing past that discomfort can make a huge difference to families and doctors, said Slavin, the MGH resident. In one recent case, he said, a health care proxy for a critically ill coronavirus patient knew that the patient wanted to try a few days on a ventilator. Then, if her condition didn’t improve, she would switch to hospice care.

“It’s hard whenever a patient is dying,” Slavin said, but “it felt like we were doing right by this patient and her family.”

Lately, Slavin has discussed the coronavirus by phone with his primary care patients who have advanced cancer, dementia, or heart failure. He describes the potential harms and low odds they’d face on a ventilator. He recommends that, if infected, they not pursue intensive care. Most patients agreed, he said.

For Slavin personally, the calculus is different. At 33 and healthy, he faces a good chance of recovery if infected and would want to try every option to survive and build a future with his wife.

“At another point in my life,” he said, “I might say, ‘I want a time-limited trial of intensive care, then shift to making comfort the top priority.’ ”

Complete Article ↪HERE↩!

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Embracing Life in a Time of Death

By Molly Jong-Fast

Some people have recently described the air in New York City as heavy. I don’t think that’s exactly right. The air has a weird crackliness to it. There’s something about living in a place that has experienced so much death in such a short period of time that changes the physics of a place. There is an electricity to the air, a nervousness that seems to permeate everything, As well it should.

As I write this essay 12,199 people have died of coronavirus in my city. The actual numbers are probably higher. Who knows what the real toll is, what with nursing homes refusing to disclose numbers and many people dying without ever getting a test or getting to a hospital? And people are dying here in surreal ways, the way they die in movies. The husband of a friend is found dead in his car. My friend’s father in law is found dead watching television in his house; he had been like that for three days. I know a handful of people who have died., Mostly parents of friends. They are not young, but in a normal world they would have another decade or two. Instead, they have been taken by coronavirus in what seems like a blink of an eye.

As coronavirus rages, New York City is quickly eclipsing Wuhan (3,869, based on official numbers, at least) and Lombardy region of Italy, which includes Milan (11,851) and any other city on earth in terms of recorded deaths. We are the epicenter of the epicenter. We are the ground zero of death.

And yet, outside my window are flowers, spring in empty Manhattan continues unabated. The flowers don’t care that no one is there to witness them bloom. The streets continue to be empty except for the occasional ambulance. In my neighborhood, the ambulances do this little beeping thing now, not a full siren anymore, and perhaps they don’t need a full siren since there is no traffic. The stores are all closed except a small gourmet food store and a pharmacy which is selling both pandemic supplies (masks, and pulse oximeters) and fancy Manhattanite supplies (expensive candles and skin creams). Life here is both terrifying and oddly mundane. Most of my day is spent inside; occasionally I’ll go for a walk. I see my one friend from six feet away. I watch a lot of television. I write my pieces. My mother and stepfather continue in their apartment alone, 20 blocks away, but I haven’t seen them in five weeks. My in-laws occasionally call in a panic, desperate for us to leave to the city.

But what they don’t understand, what they can never understand is that New York is not a habit; it’s an addiction. To New Yorkers, New York isn’t something you casually use and then abandon when you realize it could be fatal. I always knew New York was fatal it’s just fatal in a slightly different way now. When I grew up here in the 1980’s, I was only mugged once. Most of my friends were mugged multiple times–it was kind of what happened here. Right now, it’s not the crime that kills you. In fact crime in New York is down 22 percent. Right now it’s this mysterious, dangerous virus that kills. But the idea that New York can be dangerous, and bad for your health, that’s always been part of its sometimes explicable charm.

And life here can still feel oddly normal. Sometimes, if I close my eyes, everything can seem for a minute or two, like it was before March. But then there’s the silence — the lack of traffic, the lack of construction, the lack of life– and I remember it’s mid-April and we have been in lockdown for more than a month now.

The feeling here is that things are getting better, that our curve is flattening, I talked to a doctor friend who confirmed this and said cheerfully that they were “no longer going on bed checks and finding dead bodies.” There’s a cautious optimism in New York City; it’s quiet but you can feel it percolating, just under the surface. Yes, things are getting a bit better here, people are no longer dying in their cars as much. Hospitals no longer have lines around the block outside of them.

On Saturday, Gov. Andrew Cuomo said that 540 people had died the day before due to coronavirus, less than the 630 the day before. A newscaster on NY1 just said, moments ago, that we are “trending in the right direction.” Yes, this is better than previous days but it doesn’t feel better. We’re supposed to be celebrating the fact that fewer people are dying here every day, but a lot of people are still dying every day.

New York is used to tragedy. We New Yorkers have survived AIDS, 9/11 and catastrophic hurricanes. And, yes, we will survive coronavirus. But not without some very profound scars.

Complete Article ↪HERE↩!

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When a Friend’s Loved One Dies

by Lori Lipman Brown

My father, Mel Lipman, died one year ago today on his own terms. He signed himself into hospice, stopped artificial nutrition, and died peacefully with the aid of pain-killing medication.

As a humanist, I appreciate straightforward language regarding death. I don’t consider my father to have “passed away,” and I certainly don’t think he’s in a better place. Although I suppose MedCure, an organization that supports medical science and the place my dad’s body was sent, could be considered a better place than fighting pain in the hospital. That said, I appreciated everyone’s well-wishes.

The sympathy cards showed a wonderful understanding of me, my family, and my father. Everyone who sent them had chosen exactly what applied to us—no talk of heaven or other theistic concepts. Instead, the focus was on the legacy and memories that my father left for us all. Notes recalled wonderful memories of specific times with Dad and appreciation of all he had done for the community. I’m grateful for those notes, as well as the wonderful longer letter I received from Dad’s colleague in the Humanist Foundation, which I read to him during his final days.

If you had asked me (before it happened) what I would need most when my parents died, I would have said the companionship of my friends. But what I really needed was time alone with my parents’ “stuff” (including paperwork), time off from work to handle necessary paperwork, and time with my immediate family (my spouse, my brother, and my brother’s family).

If you want to help a friend whose loved one has died, it’s fine to say, “Let me know what I can do.” However, suggesting specific things you might be able to do is even more helpful. Taking into consideration restrictions imposed by the current coronavirus pandemic, you can offer advice or assistance with:

  • Burial/cremation/funeral arrangements
  • Childcare
  • Rides to appointments
  • Laundry pick-up and other errands
  • Meals at your home/their home/take-out from restaurants
  • Grocery shopping

Add to the list whatever you think your friend might need that you can do. If you’re wrong, no harm is done in offering assistance.

As I mentioned, I received many wonderful emails, calls, cards, and letters of condolence. Below is an example of the kinds of emails that I found to be helpful when my father died.

Date: March 2019
Email Subject: So Sorry to Hear of Mel’s Death

Dear Lori,

I was so sorry to hear that your dad died.  He gave so much to us in his activism, his warmth, his humor and his friendship.  Please DO NOT FEEL THE NEED TO REPLY TO THIS EMAIL; I know you have a lot on your plate right now with all the details that need to be handled following a death.

If I can help you in any way, please let me know.  Here are some things I think I could do well that might help:

  • I can notify everyone at the local interfaith group.
  • If Mel left his tax documents and you trust me with such, I can help with his tax filings.
  • I can help go through Mel’s belongings and can bring anything you want donated to his favorite charity.
  • I can listen if you want to call/skype/visit/meet for coffee to share memories of Mel, how you are coping, or anything else you want to talk about.

These are just a few things I can think of that I could do, but if you think of anything else you need me for, just let me know.

With deepest friendship…

Emails like this made my life less stressful during a trying time. It left me free to read and then move on.  Although I did not mind responding to condolence notes, I mainly wanted to focus my time on going through my father’s documents before I had to return to the East Coast.

I did take advantage of some offers of assistance. Bullet number one in the above email was quite helpful. It would have been burdensome to wonder whether I had left out any individual who needed or wanted the information, but even more burdensome to try to contact them all. Another item on the list that I took advantage of was that I had someone else help me with Dad’s taxes.

I greatly appreciated an offer to take Mel’s many mementos and writing and place them in an appropriate setting. I was about to ship to my small condo a large trophy that had been awarded to my father by the Humanist Foundation (of which he was a trustee and treasurer). At my condo, it would hardly ever be seen by anyone other than me and my spouse. Then I received a sensitively worded query from the American Humanist Association about whether I would be keeping it. I was asked if I would consider making it available to the AHA headquarters in Washington, DC, where it could be displayed. I thought that was a perfect place for the award. I also received an offer to send my father’s humanist papers to the Meadville Lombard Humanist Library in Chicago. The papers are now there.

However your friends handle the death of their beloveds, please remember that whether they reach out to you or not, it is simply important that you’re available to them. Your job as a friend is to be kind and compassionate in allowing them to do what they need to do.

A note on Mel’s last days:

The folks at hospice assured me that even after he seemed to be less aware and more asleep as the medication took its course, he could still hear me. I wasn’t certain if this was an accurate medical fact or something they said to make me feel better when I visited. But on one of his last days, Dad was furrowing his brow in discomfort. I sang to him, and I could see his whole face relax. I mention this, because it can be helpful to both you and your loved one to spend some time together even if one of you is less communicative than the other. (These days that time might have to be via computer or smart phone, but contact is still key.)

Finally, anyone who knew Mel, knew that he loved to play the dice game craps. He used to say: “A good death after a good life is like a long roll on the craps table. It has to end sometime.”

Love you, Dad. Seven out.

Complete Article ↪HERE↩!

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Do your loved ones a favor.

Find out now how they want to die.

I’m an ER doctor, and we need to know what matters most to your family member.

By Emily Aaronson

By now, most of us know the basics of getting through the coronavirus crisis: Wash your hands. Stay at home. Stay informed.

But there’s one other task we should all engage in now: Talk with a loved one about what they would need so that they can feel at peace at the end of life. It’s important that you understand what would be most important to them if they were in the last phase of their life — and what steps you and others will have to take to ensure those needs are met. These are conversations about hopes, but also about finances, decision-making and even about their more basic fears. These are conversations designed to guard against regrets.

There isn’t going to be a better time than now, when the periods in our days in which we can offer full, undivided attention are expanding. While social distancing at home, where you can be perfectly positioned on your couches or over FaceTime, with no appointments to run to, reservations to make or kids to pick up, this moment is perfect. Call your mother, or your brother or your daughter.

Of course, all of that is in addition to the other very real reason that having a careful conversation with the ones you love most about what matters most to them is important: In the days ahead, you may need to know the answers.

The most recent worst-case modeling from the Centers for Disease Control and Prevention paints a dire picture, predicting widespread transmission and asserting that most of the U.S. population will be exposed to the virus. Reports from Italy show us what care looks like when we can’t care for everyone, including the obligation to make hard decisions about who should receive the rationed resources. This doesn’t, of course, take into account all of the dramatic measures now in place. But there is no question that as illness spreads, lives will be lost. We hope that the demands on our health-care system won’t outstrip its capacities, but we also have to plan for the possibility that they might. Under those circumstances, getting your loved ones to clarify their wishes will have been an act of heroism.

The alternative is terrifying. As an ER doctor, I am already faced with patients who arrive too sick to tell me their wishes, with no documentation of what those were when they were well enough to articulate them and with family members who never asked and, as a result, just don’t know. It is in these situations, as I place tubes and lines in this failing body, that I worry we are not providing care that is concordant with their goals. If I had known that the 68-year-old with recently diagnosed metastatic breast cancer is more worried about being uncomfortable at the end of her life, rather than prolonging it, we wouldn’t have placed that breathing tube and would instead have focused our intensive efforts on making her comfortable. If I had known that the 81-year-old had always hoped to die at home, I would have spent more time trying to mobilize our home hospice team rather than defaulting to a hospital admission. If I had known that the most important thing to the 44-year-old was spending as many days as possible with his sons, I wouldn’t have subjected his wife to the extensive ER discussion about his goals and would instead have focused on giving her the emotional support she needed to prepare for the lengthy ICU hospitalization.

Ultimately, what we need to know in the hospital is what matters most to your family member. Among other things, how long would they want to receive medical care at the end of life? What concerns them about treatment? What are their preferences about where they would want to be if their time was short?

Before your family member gets here, however, there are other questions you will want to know the answers to, to better prepare yourself and them. What affairs do they need to get in order? Are there any family tensions or disagreements they worry about? How involved do they want to be in decisions about their care? If they couldn’t be, who would they like to make decisions for them?

I recently had this conversation with my own father and found out that he worried more about getting overly aggressive care than he did about not getting enough. He wanted me to be his health-care proxy rather than my mother, given my professional experience, and wants to be actively involved in any decisions about his care. Ultimately, he was clear that he would want to spend his last days at home, if my mom had the support she needed, rather than in a hospital.

These won’t be the answers for everyone. To help navigate the nuances of this conversation, the Conversation Project and Death Over Dinner are two collaborations among health-care professionals, community representatives and faith leaders that have created guides to help you move through these conversations. Regardless of which one you use, it’s important to recognize that it may take more than one discussion to leave you feeling prepared to speak with me, at the hospital, with confidence about what matters most to your loved one.

I wish we didn’t have to make and share these difficult decisions, but I worry that we are in a situation that necessitates it even more than usual. In this time of uncertainty, during which some of us have also been graced with a reprieve from the busyness of our external lives, I would ask that you join us at the front lines and — in support of the work that we all have ahead of us — have a conversation.

Complete Article ↪HERE↩!

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Four future scenarios of death and dying

By Richard Smith

The future is unpredictable. The unexpected happens often and can have a major impact. Nevertheless, some thought of how the future might look is important in preparing for it. Scenarios are one way of doing this and were developed after the wholly unforeseen oil shock of 1974. Scenarios are not predictions of the future, but rather sketches of plausible futures with the limits of plausibility set wide. They are not what people would like to happen, but rather what might happen. They have been used to think about the future of South Africa after Apartheid, the NHS, and scientific publishing. They are in many ways devices for thinking about the present, recognising things that will be important whatever the future brings.

Elaborate methods can be used to produce scenarios, but there is value in simply shared imaginings. I have imagined here four scenarios of the future of death and dying. Famously, the future is already here, but not evenly distributed, and that is true of these four scenarios.

“Immortality” and inequality

Medicine is successful with extending life but at great cost, increasing global inequality

Medical research uses genetics, big data, nanotechnology, artificial intelligence, and other methods to find ways to increase the length of life considerably. At the same private companies develop ways of “downloading brains” to allow some people to achieve “immortality.” These methods are extremely expensive, making them available to only a few. The very rich can access them and live much longer, while the poor, as now, have much shorter lives.

Climate response

The world and end of life care become much more equal

The climate crisis causes people to recognise our global interdependence and the rich to accept reducing their carbon consumption and access to expensive health care. Resources—financial and health care workers—shift from rich to poorer countries. The world becomes more equal, and the minimum package of palliative care described by the Lancet Commission on Palliative Care and Pain Relief becomes available to all while end of life care in rich countries becomes less technical and more human.

Rebalancing

Families and communities become more important and health care simply supportive in managing dying and death

A growing number of people become unhappy with the increasing medicalisation of end of life care and the lack of meaning around death and dying. They take back control from the health establishment, change laws, set the agenda, and run end of life programmes. These developments are an extension of programmes—like that in Kerala and Compassionate Neighbours, Communities, and Cities—that have developed to increase the capacity of families, communities, and volunteers to manage death and dying. Health care remains important but plays a supportive role.

Assisted dying spreads 

Assisted dying becomes a component of universal health care

Assisted dying spreads to all almost all high income countries and many low and middle income countries. It is available not only to those judged to be near the end of life but all those with unbearable suffering and those developing dementia. It is tightly regulated but provided by many health care professionals, including those working in palliative care. In most countries some 10% of people die this way, but the range is from 1% to 25%.

Complete Article ↪HERE↩!