Coronavirus preys on what terrifies us: dying alone

by Daniel Burke

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

He never saw his family again.

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

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

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

 

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

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

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

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

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

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

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

‘Lonely deaths’ can haunt us

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

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

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

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

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

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

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

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

“People in a hospital are not dying alone.”

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

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

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

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

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

It takes away our end-of-life rituals

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

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

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

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

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

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

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

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

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

Dying alone is different from dying lonely

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

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

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

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

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

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

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

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

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

This family said their final goodbyes by phone

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

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

On a ventilator, Kaminski himself could say nothing.

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

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

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

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

Complete Article HERE!

Anticipatory Grief Is Real,

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

By

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!

He Was Already Sick.

Was His Life Worth Less Than Yours?

With the coronavirus upon us, Americans now must confront death up close.

By

Before this novel coronavirus ever reached American shores, I heard dark tones of reassurance. Don’t worry, people said. It kills only the old and the sick. The thought, a temporary (and misleading) escape from rising panic, crossed my mind, and surfaced in conversation. When I spoke last week to Jessica Smietana, a 30-year-old doctoral student in French literature at New York University, she admitted the thought had occurred to her, too. “I remember saying, ‘Well, you know, when it’s reaching people that aren’t in vulnerable populations, that’s when I’ll worry about it.’”

And then, like many of our unsavory national tendencies, the sentiment took an exaggerated, grotesque form in the statements of President Trump. “We cannot let the cure be worse than the problem itself,” he tweeted in all-capital letters, signaling that he might urge states to lift protective restrictions on gatherings and businesses rather than continue to incur economic costs. In that calculus, the lives of the sick and dying became a mere data point in an actuarial account of the coronavirus pandemic’s economic impact. Mr. Trump has since changed his view, saying, “the economy is number two on my list. First, I want to save a lot of lives.”

Rightfully so. Such an easy dismissal of the sick and elderly is a ghastly indictment of one of our most cowardly cultural reflexes: an abandonment of the dying as a means of wishing away death.

It’s a weakness only the lucky can long afford, and in the midst of this pandemic, their numbers are swiftly shrinking. As coronavirus cases in the United States multiplied, Ms. Smietana, like many of us, found reason to reconsider her initial response. Her 63-year-old father, Bruce Smietana, began chemotherapy treatment for early-stage pancreatic cancer last month. “I realized what a terrible attitude this is,” she told me. “We shouldn’t think of that as an acceptable outcome — ‘Well, all these people were going to die soon enough.’”

In America, Ann Neumann writes in “The Good Death,” “death has been put off and professionalized to the point where we no longer have to dirty our hands with it.” But with the coronavirus, death has drawn too near to ignore. And this is a good thing. The dying, their value and their particular wisdom should never have been banished from our common life in the first place.

The physicians who accompany people as they face death have a unique perspective on mortality, perhaps thanks to the example of their remarkable patients. I spoke to Christopher D. Landry, a postgraduate trainee in the Columbia University psychiatry department, last month, during his emergency medicine rotation. “A lot of young people feel that life in the shadow of death is no life at all,” Dr. Landry said. “But everybody approaches that shadow eventually. And then, even people who were previously young and healthy learn to appreciate the many good things in life that they’re still able to have.”

The prospect of death also prompts a philosophical evaluation of life. These reckonings can bring the blur of ordinary life into sharp and brilliant focus.

At 19, Ms. Smietana lost her mother, and later, her older sister. From that point on, her family consisted of herself and her father, a stoic and steadfast garbage man who worked for the city of Chicago for some 30 years. Ms. Smietana told me that she had always been close with her father, but that their relationship became even more vital after the loss of her sister and mother. “That’s made this whole situation a little more intense,” she said.

The threat of the coronavirus kept Ms. Smietana from being with her ailing father.

Her father’s battle with a miserable disease has led her to contemplate justice, or the lack of it. He had already lost so much. Because the chemotherapy weakened his immune system, she wasn’t permitted to visit him during his treatment. He would be alone. As we spoke, her voice thinned with tears. “It feels tremendously unjust,” she said.

What Ms. Smietana saw was that the presumption of fulfillment — that the elderly have lived life, and can ask little more from it — is mistaken. As much as any young person can hope to feel more love, happiness, curiosity, satisfaction in the balance of life, so can the aged and the ill. In fact, they may experience those good things in life even more acutely for recognizing their scarcity.

In that respect, the dying may be more alive than any of us — more awake to the truths that emerge at the end of all things, and more aware of the elements of life that lend existence its meaning.

When I spoke to Mr. Smietana on the telephone, he was recovering from chemotherapy in the midst of a pandemic. But he didn’t ruminate on pain; instead, he talked about gratitude. He told me about Jessica, how she would be the first doctor in the family. He looked forward to her graduation, and to all of the other things he had no doubt she would accomplish; “she’s an amazing daughter,” he said.

And then he drew a labored breath, still exhausted from his treatment. “I’ve had a relatively great life,” he reflected. “I lost my wife, and I lost one of my daughters. But besides that, I’ve been pretty damn lucky.”

Mr. Smietana died a week later, on a cold Sunday morning in Chicago. He awoke that day with breathing trouble, and passed shortly thereafter. When I spoke with Ms. Smietana, she was still thinking about justice, or the lack of it. “Coronavirus is the reason I didn’t get to see my dad during what turned out to be the last week of his life,” she said. “It was the right thing to do. But I will regret it forever.”

Complete Article HERE!

Institute of Professional Grief Coaching Offers No-Cost Online and Telephone Support During Coronavirus Crisis

Many are confined to their homes and feeling a lack of personal connection, some without loved ones, and some are losing loved ones. The emotions of fear, anxiety, stress, and grief during these times of uncertainty are heightened.

Dora Carpenter, Founder of the Institute of Professional Grief Coaching, says, “We want to do our part and share compassion during this time of crisis. Sometimes individuals simply need a safe, nurturing, and non-judgmental listening ear.” A team of From Grief to Gratitude Certified Coaches has volunteered to offer no-cost online and telephone comfort, encouragement, and support.

Grief manifests in many ways and extends far beyond death of a loved one. If left unresolved, it can have a negative impact on the physical, emotional, and spiritual wellbeing. Anticipatory grief is an underlying factor as many feel uncertain about safety, health and wellbeing, and the future. Although limited in our ability to control this pandemic, how we respond can be beneficial as we move through it. Our grief coaches suggest:

  • Give yourself permission to grieve. This is a new, although temporary, sense of normalcy.  It is important to acknowledge and allow yourself to feel the painful emotions, fear, doubt, uncertainty, anxiety, stress, loss, anger, sadness, loneliness, overwhelm, and even thoughts of worst-case scenarios. 
  • Allow time to come into the present moment. Find a form of quiet that works for you to experience a sense of peace. This might be meditation, prayer, yoga, breathing, or other suggested coaching exercises to quiet the mind and go within.
  • Accept the reality of the situation. We are not only forced to accept the reality of this pandemic and uncertainty, but to confront the fragility of life itself. This is not all bad as it moves us closer to places of gratitude, appreciation, love, and even forgiveness. Look for ways you might find meaning and purpose in your life going forward as we emerge from this.
  • Take forward-moving action. Adhere to local authorities’ mandatory requirements. Use this time to focus on family togetherness, communication, self-reflection, complete unfinished projects, start new projects, journal, write a book, start an online business, get creative and think outside your comfort zone. Don’t forget to check on others.

Request a no-cost chat with a certified grief coach at www.fromgrieftogratitude.com.

Grief in a Pandemic:

Holding a Dying Mother’s Hand With a Latex Glove

by Deborah Bloom and Nathan Layne

Doug Briggs put on a surgical gown, blue gloves and a powered respirator with a hood. He headed into the hospital room to see his mother – to tell her goodbye.

Briggs took his phone, sealed in a Ziplock bag, into the hospital room and cued up his mother’s favorite songs. He put it next to her ear and noticed her wiggle, ever so slightly, to the music.

“She knew I was there,” Briggs recalled, smiling.

Between songs by Barbara Streisand and the Beatles, Briggs conference-called his aunts to let them speak to their sister one last time. “I love you, and I’m sorry I’m not there with you. I hope the medicine they’re giving you is making you more comfortable,” said Meri Dreyfuss, one of her sisters.

Somewhere between “Stand by Me” and “Here, There, and Everywhere,” Barbara Dreyfuss passed away – her hand in her son’s, clad in latex. It would be two days before doctors confirmed that she had succumbed to COVID-19, the disease caused by the coronavirus.

Dreyfuss, 75, was the eighth U.S. patient to die in a pandemic that has now killed more than 1,200 nationally and nearly 25,000 worldwide. She was among three dozen deaths linked to the Life Care nursing home in Kirkland, Washington, the site of one of the first and deadliest U.S. outbreaks. (For interactive graphics tracking coronavirus in the United States and worldwide, click https://tmsnrt.rs/2Uj9ry0 and https://tmsnrt.rs/3akNaFr )

Dreyfuss’s final hours illustrate the heartrending choices now facing families who are forced to strike a balance between staying safe and comforting their sick or dying loved ones. Some have been cut off from all contact with parents or spouses who die in isolation, while others have strained to provide comfort or to say their final goodbyes through windows or over the phone.

Just three days before his mother died, Briggs had been making weekend plans with her. Now, in his grief, he found himself glued to news reports and frustrated by the mixed messages and slow response from local, state and federal officials.

“You find out all these things, of what they knew when,” Briggs said.

Officials from Life Care Centers of America have said the facility responded the best it could to one of the worst crises ever to hit an eldercare facility, with many staffers stretched to the brink as others were sidelined with symptoms of the virus. As the first U.S. site hit with a major outbreak, the center had few protocols for a response and little help from the outside amid national shortages of test kits and other supplies.

‘NOT FEELING TOO GOOD’

A flower child of the 1960’s, Dreyfuss lived a life characterized by art and activism. After marrying her high school sweetheart and giving birth to their son, she pursued a degree in women’s studies at Cal State Long Beach, where she marched for women’s equality and abortion rights.

Furious over President Gerald Ford’s pardoning of former president Richard Nixon in 1974, Dreyfuss took to her typewriter and penned an angry letter to Ford. “Today is my son’s 9th birthday,” she wrote of a young Briggs. “I do not feel like celebrating.”

By the time she arrived at the Life Care Center in May 2019, years of health issues had dimmed some of that spark, her son said. Fibromyalgia and plantar fasciitis restricted her to a walker or a wheelchair, and chronic obstructive pulmonary disease required her to have a constant flow of oxygen.

When her son visited on Feb. 25, he brought a grocery bag of her favorites, including diet A&W root beer. She awoke from a nap and smiled at him, but hinted at her discomfort.

“Hi Doug,” she said. “I’m not feeling too good.”

Still, Dreyfuss talked about an upcoming visit with her sisters – the movies she wanted to see, the restaurants she wanted to try. The mother and son then had only a vague awareness of the deadly virus then ravaging China.

In hindsight, Briggs realized he had witnessed the first signs of her distress. His mother was using more oxygen than usual, her breathing was more strained.

At the time, staff at the nursing home believed they were handling a flu outbreak and were unaware the coronavirus had started to take hold, a spokesman has said.

‘A TINY FOOTNOTE’

Two days later, Briggs dropped by to see his mom. She felt congested, and staff were going to X-ray her lungs for fluid. Briggs, 54, still saw no red flags, and continued to discuss weekend plans with his mother.

“I hope we can finally watch that new Mr. Rogers movie,” she told him, referring to the film, A Beautiful Day in the Neighborhood.

Briggs hugged his mom before she was wheeled to the imaging room and drove for a quick meal. Soon after, he received a call from the nursing home. His mother was experiencing respiratory failure. She was on her way to the hospital. Doug rushed to nearby EvergreenHealth Medical Center. By then, she was unresponsive.

At the time, there were 59 U.S. cases of coronavirus, a number that has since soared to more than 85,000.

After hearing of her sister’s sudden hospitalization, Meri Dreyfuss remembered an earlier voicemail from Barbara: her distant voice, groaning for 30 seconds. When she had first heard it, she assumed Dreyfuss had called by accident, but now she realized her sister was in pain. “It haunts me that I didn’t pick up the phone,” she said.

Briggs spent close to 10 hours the next day in his mom’s hospital room. He wore a medical mask and anxiously watched her vital signs – especially the line tracking her oxygen saturation.

On his way out the door, a doctor took him aside to say they were testing her for the coronavirus. He remembered the difficulty reconciling the outbreak taking place on television – far away, in China – with what was happening in his mother’s hospital room.

In the Bay Area, Meri and Hillary Dreyfuss were packing their suitcases on Feb. 28 when Briggs telephoned. After the call, they decided that visiting their sister would pose too much danger of infection.

“I realized there was no way we were going to get on a plane at that point, because we couldn’t see her,” said the middle sister, Hillary. “And now, it seemed that we shouldn’t be seeing Doug, either.”

They canceled their flights. On Saturday, Feb. 29, Briggs learned his mother’s condition was deteriorating. Tough decisions loomed. Briggs and his aunts decided to prioritize making her comfortable over keeping her alive. Doctors gave her morphine to relax the heaviness in her lungs.

She died the next day.

Having emerged from a two-week quarantine, Briggs will soon retrieve his mother’s cremated remains. The family has been struggling with how to memorialize her life in such chaotic times.

“All the things that one would want to happen in the normal mourning process have been subsumed by this larger crisis,” said Hillary Dreyfuss. “It’s almost as though her death has become a tiny footnote in what’s going on.”

Complete Article HERE!

It’s Time to Talk About Death

The coronavirus pandemic highlights how much we need to have conversations about end-of-life care.

By Sunita Puri, M.D.

Joseph, a man in his 70s, has been on a ventilator for two weeks. His heart, lungs and kidneys are failing. Though I know these facts about his physiology, I will never see him up close. I can only glance at him through clear glass doors, the ventilator and dialysis machine obscuring his face. The coronavirus has limited the number of physicians who can enter his room.

I cannot sit with Joseph’s wife and children to ask what sort of medical care he would want. I cannot read their body language, lean in toward them or offer a tissue as they cry. Now, because of the coronavirus, most hospitals don’t allow families to visit.

Instead, I met Joseph’s wife and children on a Zoom conference call.

“I want to apologize to you for being a face on a screen,” I began. “I wish we could talk about this in person.”

They nodded together, their eyebrows furrowed.

“I wish that I had better news to share,” I said. “Unfortunately, despite our very best efforts to support Joseph’s heart, lungs and kidneys, his body is showing us that he is getting sicker.” I watched, disembodied from a distance, as they hugged each other and cried.

His wife told me that Joseph had never talked with her about what he would want in this sort of situation. “I don’t know what he would say,” she said. “We didn’t think this would ever happen.”

Americans are not good at talking about death. But we need to be prepared for when, not if, illness will strike. The coronavirus is accelerating this need.

In Italy, doctors have had to make excruciating decisions about which patients receive ventilators, which are in short supply. In the United States, we are already facing shortages of life-sustaining therapies; doctors will need to make these same difficult decisions.

Our collective silence about death, suffering and mortality places a tremendous burden on the people we love, and on the doctors and nurses navigating these conversations. We should not be discussing our loved one’s wishes for the first time when they are in an I.C.U. bed, voiceless and pinned in place by machines and tubes.

Talking about death is ultimately talking about life — about who and what matters to us, and how we can live well even when we are dying. Rather than being motivated by fear and anxiety, we can open these discussions from a place of care and concern.

Here’s how I opened a conversation about death with my own parents earlier this month: “Mama, Daddy, seeing a lot of people getting really sick with the coronavirus made me think of both of you. None of us knows what’s around the corner, and I want to be sure I know what you would want for yourselves when you get really sick,” I told them. “I want to be your voice so that I can make decisions for you, not for myself.”

“If I needed a ventilator for a short time, or dialysis, that would be OK, but I would only want treatments that would help me stay independent,” my mother replied.

My father nodded in agreement. “My main hope is to be with all of you. If I will lose my ability to be myself, if my mind will never be clear, please just let God take me,” my father told me, stirring his tea.

Though it is a daunting task, talking about death offers opportunities for grace and connection with our loved ones. Last summer, I watched as a patient’s brother told her for the first time how much he loved her, just before she told him she was choosing hospice instead of a clinical trial. In the fall, I walked the wife of a patient into her husband’s hospital room, where they renewed their wedding vows amid cake, balloons and glittery confetti.

“This was what she always wanted,” he told me when we discussed what was most important to him. “I put it off for so long, but I have to do it before I die.”

Working in the hospital with patients suffering from the coronavirus made me ask myself the questions I hope you will ask yourselves and the people you love:

  • What is most important to me in my life? (My family and pets, and the ability to write and doctor).
  • What makes my life meaningful? (My work; dancing; being outdoors; being with my loved ones).
  • What sort of quality of life would be unacceptable to me? (Being permanently bed-bound or neurologically devastated; indignity and suffering; depending on others for personal care).
  • Who is best positioned to speak on my behalf? (My brother).
  • Who would I not want involved in decision making? (Family living abroad).
  • Would I want to undergo C.P.R. should my heart stop? (Only if the issue leading to the cardiac arrest is reversible. If my heart stopped even when I was being sustained on life support machines or dying from an incurable disease, then I’d prefer to die peacefully rather than with C.P.R.).
  • What would bring me comfort if I were hospitalized? (Pictures of my family; music I love playing in my room; prayer).

This is by no means an exhaustive list of questions. The Conversation Project offers many more, as well as guidance on how and when to begin these conversations. The Serious Illness Conversation Guide gives health care providers a road map of when and how to start asking patients about dying. Both resources offer the compassionate, incisive — and often unfamiliar — language required for us to ask the right questions and empower our loved ones to share specific, honest answers.

Confronting our fears about death — having a conversation about it in frank terms — can be alternately terrifying and tender. Yet knowing how to honor our loved ones’ wishes when they can’t speak for themselves is one of the bravest and most loving things we can do.

Complete Article HERE!

A Daughter Learns in Voicemails That Coronavirus Has Killed Her Mother

by Tim Reid

Debbie de los Angeles woke up on March 3 to two voicemails from nurses at the Seattle-area care home that housed her 85-year-old mother, Twilla Morin.

In the first one, left at 4:15 a.m., a nurse asked a troubling question – whether the “do not resuscitate” instructions for her mother’s end-of-life care were still in force.

“We anticipate that she, too, has coronavirus, and she’s running a fever of 104,” the woman on the recording said. “We do not anticipate her fighting, so we just want to make sure that your goal of care would be just to keep her here and comfortable.”

The nursing home in Kirkland, Washington was dealing with the beginnings of an outbreak that has since been linked to more than 30 deaths. De los Angeles had not yet fully grasped the grave threat; she comforted herself with the thought that her mother had made it through flu outbreaks at the center before.

Then she took in the next voicemail, left three hours after the first by a different nurse.

“Hi Debbie, my name is Chelsey … I need to talk to you about your Mom if you could give us a call. Her condition is declining, so if you can call us soon as possible that would be great. Thanks. Bye.”

De los Angeles called the home immediately. Her mom was comfortable, she was told. She did not change the “do not resuscitate” instruction. She wanted to visit, but held off: She is 65, and her husband Bob is 67; both have underlying medical conditions that pose serious risks if they contract coronavirus. She thought they had more time to find the best way to comfort her mother in what might be her final hours.

At 3 a.m. the next morning, Wednesday, March 4, de los Angeles woke up and reached for her phone. Life Care Center had called – leaving another voice message just a few minutes earlier, at 2:39 a.m.

“I know it’s early in the morning but Twilla did pass away at 2:10 because of the unique situation,” the nurse said. “The remains will be picked up from the coroner’s office. They’ve got your contact.”

The “unique situation” has of course become tragically common worldwide, as thousands of families have been separated from their loved ones in the last days before they died in isolation, often after deteriorating quickly. The three voicemails – eerily routine and matter-of-fact – would be de los Angeles’ final connection to her mother. She had gone from knowing relatively little about the threat of COVID-19 to becoming a bereaved daughter in the span of one day.

The hurried voicemails with such sensitive information were one sign of the chaos inside the facility at the time, as nurses worked feverishly to contain the outbreak while residents died from a virus that was just hitting the United States. One of the nurses who called de los Angeles, Chelsey Earnest, had been director of nursing at another Life Care facility and volunteered to come to Kirkland to care for patients through the outbreak. She never expected the disease would cause dozens of deaths and the mass infection of patients and staff.

Earnest worked the night shift, when patients with the disease seemed to struggle the most, and many, like Morin, succumbed to the disease. Infected patients developed a redness in and around their eyes. The center’s phones rang constantly as worried families called for updates. About a third of the center’s 180 staff members started showing symptoms of the disease; the rest started a triage operation.

“There were no protocols,” said Life Care spokesman Tim Killian, as nurses found themselves thrust into a situation more dire than any faced by an elderly care facility “in the history of this country.”

The center’s nurses, he said, would not normally leave such sensitive information about dying relatives in voicemails, but they had little time to do anything else – and did not want anyone to hear about a loved one’s condition in the news before the center could inform them. Outside the home, journalists and family members gathered for the latest scraps of information on the home’s fight against the virus. Many relatives, barred from going inside for safety reasons, stood outside the windows of their loved ones’ rooms, looking at them through the glass as they conversed over the phone.

Leaving the emergency voicemails, Killian said, made “the best of a difficult situation.”

From the outside, the messages appear abrupt and impersonal, but may well have been the best or only way to properly notify families in such a crisis, said Ruth Faden, professor of biomedical ethics at John Hopkins University’s Berman Institute of Bioethics. While medical professionals should normally aim to impart such urgent information in person, the circumstances – an overwhelmed staff, dealing with dozens of dying patients – likely made that impossible, she said.

“The way to find out is difficult, always,” Faden said. “What people remember is how much the nurse cared about the person.”

When de Los Angeles heard of her mother’s death in one of those voicemails, she immediately called one of the nurses back, looking for any bits of information about her mother’s final hours. The nurse sounded upset.

“She told me my Mom was one of her favorite people there; she was going to miss seeing my Mom going up and down the hallway in her wheelchair,” de los Angeles said.

They had given her mother morphine and Ativan to keep her calm and comfortable, the nurse told her.

“My Mom was asleep, and then she just went to sleep permanently,” de los Angeles said.

De los Angeles, an only child, aches over not having spoken to her mother before she died. Morin had been a bookkeeper for several companies. De los Angeles fondly remembers doing household chores with her mother on Saturday mornings, then going to the local mall or to Woolworth’s for lunch.

The separation continued even after her mother’s death. De los Angeles telephoned the crematorium where her mother had been taken, as Morin had arranged years earlier, to ask if she could view the body.

“Absolutely not,” the woman told her, out of concern de los Angeles could be infected.

Morin had been tested for coronavirus shortly after she died, on March 4. The results confirmed her coronavirus infection a week later. Soon afterwards, she was cremated.

“We picked up her ashes on Saturday,” she said. “I never saw or spoke to mom. It’s put off the closure.”

It’s also put off the funeral. De los Angeles had planned the ceremony for April 4 – the birthday of her father, who died ten years ago. Her ashes would be placed next to his. But the service will have to wait because Washington’s governor, Jay Inslee, has banned gatherings of 10 people or more.

In the meantime, de los Angeles has worked to make sure her mother’s death certificate records her as a causality of the pandemic. The doctor who signed it did not have confirmed test results showing a COVID-19 infection at the time of her death, de los Angeles said, and listed the cause as “a viral illness, coronary artery disease and a respiratory disorder.” But the doctor has since moved to include coronavirus as a cause, at de los Angeles’ request.

As she waits for the funeral, de los Angeles has put the urn holding her mother’s ashes behind some flowers on the mantle in her living room. She says she can’t bear to look at it.

Complete Article HERE!