Category: Death Education

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Death, one day, is inevitable. Suffering should not be.

A temporary hospital at the Javits Center in New York on March 27.

By Sebastian Mallaby

About a month before the coronavirus pandemic engulfed us, my mother understood that she was dying. She had cancer. She had struggled to swallow food and maintain her weight. She was so light that I could lift her like a 12-year-old. On her firm instructions, the ambulance we children had arranged to take her to the oncologist was rerouted to a hospice. There, she received tender and expert end-of-life care. After four days, she died: peacefully, without pain, and with her family around her.

Today, this memory feels weirdly distant. In Italy and Spain — and soon in other countries — patients are dying in opposite conditions to the ones my mother experienced. They go to hospitals hoping for treatment. But, for lack of ventilators, some of them die gradually, alone. Visits from loved ones are often prohibited.

The flood of commentary on the pandemic focuses, correctly, on how to reduce fatalities. But we should also consider how to ease the loneliness and pain of those deaths that are inevitable. No one wants to die slowly in a medical hangar, cut off from family and friends. Rather, most want something as close as possible to what my mother had. They want to choose their own balance between prolonged life and prolonged pain. They hope to have the right to reconsider their choices.

Of course, in the current crisis, the hospices cannot serve everybody, and infectious disease presents risks to caregivers that cancer does not. The imperative is, therefore, to give people the tools to manage death at home, as humanely and safely as possible. Yet this component of our response to the pandemic is missing. We have not grappled with the need to distribute morphine to those who are suffering, even if this is a risky course, as the opioid crisis makes obvious; once we have finally supplied our medical professionals with the masks and other protective gear they need, we need to do the same for family caregivers. But we do not discuss these things, because we are determined to resist death, not dwell on the question of how we might go about dying.

My mother’s last lesson to her children was that this obstinacy is mistaken. While I was vainly learning all I could about her treatment options, she was coming to terms with the reality she could feel around her liver. “No more abracadabra,” she told me fiercely, when I protested that it was too early to give up. She knew she would soon die, and she wanted a good death.

A good death requires lucidity, not magical thinking. Today, this means confronting the reality of overloaded hospitals, and being honest about their inability to help all those who are stricken. In Italy, doctors have had to perform a kind of triage normally seen in wartime: They allocate life-saving ventilators based on age and health status. The same has happened in Madrid, where hundreds queue to be admitted to emergency rooms. Countries such as the United States and Britain will be lucky to escape this fate. New York’s governor, Andrew M. Cuomo, has repeatedly sounded the alarm about the shortage of ventilators. “You’re going to be thousands short. Thousands,” he said on March 15.

Hospitals don’t like to talk about the terms of the triage. Like the rest of us, they prefer to focus on preventing death; they recoil from being explicit about when death might have to be accepted. As a recent article in the New England Journal of Medicine noted, the absence of clear guidelines burdens front-line clinicians, who are forced to make heart-rending choices — doctors in Italy have wept under the pressure. But the absence of clear guidelines also leaves citizens adrift. If you or I fall seriously ill, will we have access to a ventilator?

Last week, two medically connected relatives called me. Being well informed and 70, they both know they fall on the wrong side of any triage. They have therefore resolved that, if their lungs begin to fail, they will avoid going to the hospital. At 70 — even in their 80s — patients still have a good chance of surviving covid-19 at home. But if they do not, my relatives’ definition of a good death is to be together at the end, even at the risk that one will infect the other. All that they ask is access to the palliative drugs that will control the suffering.

Society should think about the millions of people who are not medical insiders, and who should be helped to understand the choices that may potentially confront them. No doubt if governments and hospitals made public their criteria for triage, people would be horrified. But at least they could decide whether to seek help at a hospital or remain in their own beds. And the medical authorities, having leveled with the citizens, could be more forthcoming about the help available at home. To anyone who has witnessed death, it would be a huge relief to know that at least the pain can be managed. Death will be inevitable for each of us, one day. Terrible suffering should not be.

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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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↩!

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Website that helps you plan for death finds success with millennials

By Rebecca Ruiz

Liz Eddy has lost track of how many times she’s told the story that led her to co-found Lantern, a website that helps people tackle the complex logistics of losing someone they love and also plan for their own deaths.

That story starts with a phone call on a Saturday morning from a nursing home with news that Eddy’s grandmother had died. Two police officers and a nurse greeted Eddy in the room where her grandmother’s body lay.

“They looked at me and said, ‘What do you want to do?'” recalls Eddy, who was 27 at the time. “I had no idea what to turn to … and really was just thrown into a rapid Google search where I typed in what do you do when someone dies?”

“I was just thrown into a rapid Google search where I typed in what do you do when someone dies?”

Eddy, who lost her father as a child, anticipated this moment. Her grandmother, who was frail, had done some pre-planning. She’d written a will, completed an advanced directive for her medical care, and told Eddy where she kept important paperwork and belongings.

But Eddy quickly learned that there’d been oversights, including how she might close certain accounts, stop auto-refill prescriptions, and find online passwords. Eddy figured she’d rely on a comprehensive online resource that could walk her through what to do but found none. Instead, she embarked on a “scavenger hunt of websites” for answers.

“I fully expected to find something like Lantern,” she says.

In the midst of coping with her grief and trying to settle her grandmother’s affairs, Eddy walked in the door of her best friend Alyssa Ruderman’s home, and said, “We’ve got to do something about death.”

The pair launched Lantern last fall with $890,000 in pre-seed funding. The website offers free checklists for users who need to plan a funeral, help dealing with logistics that follow a funeral, or assistance sorting out their last wishes in advance of their own death. The site has thousands of users, and to Eddy’s surprise, 40 percent of them are 35 and younger.

Lantern’s appeal to millennials speaks to a number of trends. They may help older parents plan for what happens when they die and then decide to make similar arrangements for themselves. Accustomed to having everything in their lives optimized or organized by a digital tool, the 35-and-under crowd may view online end-of-life planning as a helpful service like any other they use.

In general, talking about dying seems less taboo to many millennials. They encounter the “positive death” movement online, which aims to make conversations about death normal and routine. But millennials also live in a world that seems beset by crisis, whether that’s mass shootings, climate change, or coronavirus. Contemplating what the end looks like is part of being alive.

Anita Hannig, an associate professor of anthropology at Brandeis University who studies death and dying, says people — not just millennials — increasingly want to express their unique selves in death as in life.

The challenge is getting people comfortable enough to consider what that looks like. Eddy and Ruderman have designed Lantern to sound like a compassionate friend who knowingly takes your hand. The site isn’t morbid but instead offers practical information about the choices we can make before we die, like hiring a death doula and how to write a will. Users can compare different burial options, learn how to select life insurance, and explore how they want to be remembered online.

“A lot of people still think that if you’re talking about death too much, there’s an eerie way you’re bringing it about,” Hannig says. “In some ways, having a website like this [is] making death so much more manageable so that you can focus on the actual process of death and dying when it happens.”

Viana McFarland, a 25-year-old New Yorker, discovered Lantern after an employer-sponsored financial planning workshop prompted her to think about what might happen to her belongings and modest savings after she died. After searching Reddit and Google for resources, she found Lantern.

“There were small things I didn’t think about,” McFarland says.

That included the specifics of her burial. McFarland learned that she could let her body decompose in a “mushroom suit,” which hastens the breakdown of a corpse using mushroom spores and other microorganisms. She explored how to donate organs and leave money to the ACLU and Planned Parenthood. Most of all, McFarland wanted to spare her loved ones stress, confusion, and conflict. The time she spent on Lantern felt useful and productive.

“I guess younger people, with more resources at our hands, might become informed sooner or in a different way than our parents and grandparents were,” says McFarland.

More than three dozen articles on Lantern offer advice and insight on common questions. Its checklist offers a step-by-step guide to managing your last wishes. Tasks include making a funeral financial plan, safely storing financial information so it can be accessed by a loved one, and writing a last will and testament.

Lantern is also sentimental. The checklist prompts users to reflect on their legacy, asking about the three best decisions they ever made, what advice they’d give to their younger selves, and what they’d want their grandchildren to know about them.

“These questions were really developed because we started to realize that people don’t ask these questions of their loved ones, and it’s often the thing you think about when they’re gone,” says Eddy, who personally longs to know stories from her father’s life.

While it’s crucial to record the practical and sentimental information, Lantern must also deliver on keeping it secure. The site uses encryption and currently doesn’t collect information it doesn’t feel equipped to protect, such as passwords, wills, and Social Security numbers.

Instead, its business model is based on referring users to services that specialize in certain products, and which Eddy and Ruderman have personally vetted. For estate planning, Lantern recommends Legal Zoom. To help loved ones close online accounts, it suggests the password manager 1Password. Lantern can receive a referral fee when its customers sign up for such services. Eddy and Ruderman are also exploring pitching Lantern to organizations, like life insurance companies and hospitals, whose clients need the information the site has to offer. They’re making the same case to human resources departments who could use Lantern as a benefit for employees who, like McFarland, don’t know how to start end-of-life planning.

Though Lantern will probably offer a premium subscription to users in the future, Eddy and Ruderman are adamant that its basic how-to content and checklists will never be paywalled.

“We don’t think people should not have access to this information because they do not have means,” says Eddy. 

The company can take that stand because it’s a public benefit corporation, which means it plans to pursue a mission-driven approach while also seeking a return for investors. 

“Our vision is to be the central resource that any one person uses to navigate their life before and after a death.”

Nancy Lublin, an entrepreneur who is the founder and CEO of Crisis Text Line and the former CEO of DoSomething.org, made an angel investment in Lantern. Lublin knows Eddy and Ruderman from their previous roles at Crisis Text Line and DoSomething.org, respectively.

She said in an email that Lantern is poised to serve a “huge untapped market. Millennials, in particular, are bound to find Lantern appealing.

“How the heck are people going to deal when their parents and grandparents (fyi: enormous boomer generations) pass away?” wrote Lublin, noting that millennials use digital tools to find everything from roommates to lovers to marijuana. Of course they’d want something similar to help them manage death.

Eddy and Ruderman are aiming to become the first thing anyone turns to when it’s time to grieve a loved one or plan for the end of their own life.

“Our vision is — and always will be — to be the central resource that any one person uses to navigate their life before and after a death,” says Ruderman. “That is our North Star.

Eddy is buoyed by the possibility that she’s helping others avoid what she experienced following her grandmother’s death: “You don’t have to be forced to pick the first thing you see on Google,” she says.

Complete Article ↪HERE↩!

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Planning for death during a pandemic

By Dr. Ramy Salah

As a palliative care doctor, it is my job to sit with patients and imagine death, the distant reality that we would rather ignore. After warning a heavy conversation is forthcoming, I ask, “Have you thought about how you would want your care to look like if time were short?” The responses to questions about end-of-life care are as varied as they are familiar. “Keep me comfortable.” “I don’t want to be a burden to my children.” “If I can’t recognize my wife, let me go Doc.” Through statements like these, I learn which treatments are most appropriate for my patients on a personal level. It is my goal, after all, to make sure the care that my patients receive matches the care that they would want.

Palliative care focuses on quality of life for patients dealing with serious illness. Therefore, these conversations have become second nature to me. As precise as a surgeon is with her scalpel, I tactfully employ a combination of words and silence to explore my patients’ thoughts about transitions from health to illness, from home to hospital, from life to death. I temper my approach delicately over several visits — as the maxim reads, “Death, like the sun, cannot be looked at steadily.” This is possible with conditions such as cancer or dementia, where life expectancy can be months or even years. During the time of COVID-19, however, we may not have that sort of time.

In the last month, we have been inundated with medical information — I, for one, have tried to decipher more graphs than I would have cared to in a lifetime. From presidential press conferences to cable news to twitter feeds, we eagerly listen for the evidence to make sense of the pandemic. What are the latest numbers of cases and deaths? Which experimental treatments among the antimalarials, antivirals, antibiotics and antibodies seem promising? What are the ethical considerations on rationing ventilators in a national shortage? I am elated that medical professionals have become the loudest voices in the media, however there hasn’t been encouragement for discussions like the ones I have with my patients.

Advance care planning, or better read as “planning for your care in advance,” is generally thought of as a good idea. Though 82% of people say that documenting their wishes regarding end-of-life care is important, only 27% have completed advance directives. My patients are also reluctant to talk about death, but I have seen how much harder it is to have these discussions when they’re critically ill. I say, “In a health crisis you have to process your emotions before making medical decisions. Or you can make those decisions now before things get too emotional.” Studies show that the latter makes for a much smoother process for the patient, their loved ones and their care teams.

So, where do you start? There are three steps in advance care planning:

1). Reflection: Ask yourself — What makes life worth living? What quality of life would be unacceptable for me? There is no shortage of resources to help begin the process, including PREPARE, Go Wish, and The Conversation Project.

2). Conversation: This is the hardest step in the process, and the most crucial. This exercise is useless if you do not share your values and beliefs with those who will be involved in your care if you get sick. This includes your loved ones and your doctors.

3). Documentation: I urge readers to become familiar with two documents: 1). The Advance Directive (AD); and 2). The Physician Orders for Life-Sustaining Treatment (POLST) form. The AD names a durable power of attorney who will make decisions on your behalf if you are unable. It will also direct those involved in your care how to treat you if time were short. The pink POLST form mainly addresses resuscitation — if you were found pulseless, would you want medical personnel to carry out CPR or allow a natural death? I argue that everyone should have an AD, regardless of age or health status. Everyone with a serious medical condition, especially if they reside in a nursing home, should complete a POLST with their doctor.

In the age of coronavirus, I’m sure you, like me, have vacillated between hope and fear. Maybe you shrugged it off as unfounded mass hysteria one day and envisioned doomsday scenarios the next. Regardless, you must translate your energy into positive action. As grateful as I am to you for staying home, practicing good hand hygiene and donating protective equipment to hospitals, I urge you to begin the tough conversations and advance care planning with your loved ones. After all, it’s always too early until it’s too late.

Complete Article ↪HERE↩!

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Anticipatory Grief Is Real,

And It’s Okay to Feel it During the Coronavirus Crisis

By Brittney McNamara

I keep having nightmares about going to Target. In these dreams, I walk through the aisles of one of my favorite places, enjoying a Saturday shop. Suddenly, as people brush by me or stand close in line, I realize my grave mistake: I’ve ventured out into a pandemic, and I’m surrounded by potentially infected people. Panic sets in. Anger at myself for somehow forgetting this new reality. Then I wake up feeling sad. I know I can’t go to Target, and I miss it. Once I can go back, will I be afraid, like in my dreams?

This is one of many minor things I mourn about our new way of life. As COVID-19 sickens thousands across the country and the world, the future we’ve all depended on is no longer a foregone conclusion, and it’s really, really sad.

Harvard Business Review named grief as the “discomfort” so many of us are experiencing, and that’s exactly true. I’ve cried for days on end, thinking about the things I thought I’d be doing. Worse, I cry when I imagine people in the near future I had neatly mapped out getting snatched away by an unrelenting illness. I grieve for those who are sick and dying, but I also grieve for my loss of autonomy, trips I’ve canceled, lost hours in the sun, and for the ideas I had about my future life that seem less tangible by the day.

I know I’m not alone. College and high school graduations won’t happen this year, leaving young people who are looking forward to a new chapter of their lives floundering. Many will miss out on prom, a pivotal coming-of-age moment for some. The going-away parties, weddings, birthdays — they’re all canceled.

Right now it seems trivial to mourn the absence of your college graduation ceremony or a school dance because of the coronavirus pandemic, particularly as dead bodies overwhelm hospital morgues. It is kind of trivial. And it’s true that it’s better to miss a milestone if it means saving lives.

But as our lives are torn apart, rendered unrecognizable by social isolation and coronavirus cancellations, it’s only human to mourn the life you thought you’d have.

“Anticipatory grief is that feeling we get about what the future holds when we’re uncertain. Usually it centers on death. We feel it when someone gets a dire diagnosis or when we have the normal thought that we’ll lose a parent someday,” David Kessler, grief expert and author, told Harvard Business Review. “Anticipatory grief is also more broadly imagined futures. With a virus, this kind of grief is so confusing for people. Our primitive mind knows something bad is happening, but you can’t see it. This breaks our sense of safety. We’re feeling that loss of safety. We are grieving on a micro and a macro level.”

It can also feel confusing because grieving a lost shopping trip, or even something bigger like a graduation, feels selfish. How can I feel bad for myself when I still have my life and, so far, my health? Ashley Ertel, LCSW, BCD with Talkspace, says ranking grief isn’t helpful.

“You may even be feeling guilty for being sad about missing out when other people are facing sickness and death,” she tells Teen Vogue. “I hope to encourage you by saying that grief comes in all shapes and sizes, and it is normal to feel all sorts of emotions when your reality does not match up with your expectations. Each of our emotional experiences is valid. We don’t compare our levels of joy, and we need to stay away from comparing our feelings of sadness. Sad is sad.”

Sad is, in fact, sad. Of course, no one would compare the grief of missing prom to that of losing a loved one, or even having and recovering from COVID-19. Everyone knows it’s not the same. Still, we feel sad, especially when the celebrations and rituals that “provide special meaning [in] our lives” are taken away, as Ertel puts it. Rather than push our feelings of grief and sadness away, Ertel recommends we allow ourselves to feel it. Acknowledge and honor your feelings, she says; then try to live in the current moment.

In this moment, I feel sad that I can’t go to my favorite restaurant on Fridays like I normally do. I feel sad that I might have to cancel my bachelorette party. I feel sad that this was supposed to be a happy, busy time in my life and it’s now marked by death and daily feelings of despair.

I also feel sad that people are sick. I worry about myself, my friends, and my family. I feel sad that people are dying, and I feel sad for their families. I feel sad that, when this is all over, we won’t know what’s normal and won’t feel familiar with the world around us. I feel sad that, more than ever, I don’t know what the future holds.

But I also feel excited for the dinner I’ll eat tonight. I feel thankful for my comfortable couch and my two adorable cats. I feel like I should brush my teeth. I feel grateful I have food in my fridge and a secure place to weather this storm. I also occasionally feel thankful for this big slowdown, for the canceled plans and postponed events. The mundane joys and discomforts of life are still here, amid all of this. Now, more than ever, I am reminded that there are things to be hopeful for, like the future trips to Target I know I’ll take. And I have hope that they will be happy, like they were before.

Until then, I think I’ll be sad — and that’s okay.

Complete Article ↪HERE↩!

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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.

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