On the obligation to prevent people from dying alone

The woman is dying. She’s 78, though she looks younger. I don’t know her, and I know little about her aside from her name, her career (she worked for the U.S. Postal Service) and her faith (she was an associate pastor at her Baptist church). I stand by her bed in a Springfield, Va., nursing home, noticing the religious knickknacks on her brown nightstand — the porcelain figurine of Jesus washing a disciple’s feet, a wood cross emblazoned with a quote from Proverbs: “She is clothed in strength and dignity and she laughs without fear of the future.”

I lean toward her closed eyes to introduce myself. Six days ago, she stopped eating, drinking and interacting. She may not survive the night, but her breathing seems surprisingly strong. “My name is Ken,” I tell her. “I’m a volunteer, and I’m going to be staying with you for a bit. It’s an honor to be here.”

I’ve been volunteering for about a month with Capital Caring Health, a hospice and advanced home-care organization that works throughout the Washington region. This is my second time working alone as a vigil volunteer, and despite weeks of training, I’m nervous. Should I talk to her? Should I not talk? Should I hold her hand? Some volunteers sing. Some pray. A pastor friend recommended some Scripture (I’m not religious), but the woman’s roommate, who’s quite alive, asks a nurse to turn on the TV, and an episode of “Martin” blares. Should I shout proverbs over the sitcom zingers and Geico ads? And what if she opens her eyes? What if her last image on Earth is a strange man in a mask?

So I sit quietly. The dying can feel our presence, I’ve been told. That’s the mission here. To be a compassionate human being. To provide family members — in this case the woman’s devoted daughter — with a break from their vigil. To make certain someone is here if she needs something. To ensure that she won’t feel alone and, most important, that she won’t die alone.

I understand the responsibility. Six years ago, my 74-year-old mother died alone in her home. As the years have passed, I’ve felt not only guilt, but a sense of failure. After my father’s sudden death in 2005, I would call Mom nightly around 9 o’clock, just to check in and chat. But on Sept. 13, 2015, I was out of the country. My brother-in-law unexpectedly texted. “Call me,” he wrote.

Two worried neighbors had found Mom’s body on her living room floor. She likely died of a heart attack the night before. One neighbor, an early riser, had noticed at 4:30 a.m. that the lights were on and the blinds were up, which was telling. Mom was fanatical about closing the blinds. When the neighbors entered that morning, the TV was still on. A 911 operator said to check for a pulse. The body was cold.

Mom suffered from anxiety and depression. She didn’t like living alone, so she surely hated dying alone. I assume she died quickly, but what if she didn’t? What if she was in pain? What if she was traumatized, terrified, aching for someone, anyone, as she died?

Over the years, I’ve tried to push those thoughts aside, but then covid-19 arrived, and dying alone became one of the pandemic’s many cruelties. Patients who died of covid in 2020 were 12 times as likely to die in a medical facility as patients who died of any cause in 2018, a Northwestern University study found. Because of visitation restrictions, many died without companionship, surrounded, at best, by the masked faces and gloved hands of medical staff.

“Patients with severe COVID-19 are hospitalized and left alone in a room where ‘spaceship-dressed’ health professionals visit them, speaking behind their mask and shields, trying to keep their own social distance with the patient,” noted a November 2020 opinion piece in the journal Frontiers in Public Health. “When patients are transferred to medium or intensive care units, they completely lose connection with their family and friends. They stay in isolation, and in many cases, eventually die, without ever having had a chance to share a final word with their beloved ones.”

Three days before my vigil service at the nursing home in Springfield, I visited my parents’ grave in Fairfax, Va. It was the sixth anniversary of my mom’s death. As I stared at her name on the flat headstone, I still wondered if she suffered. And I found myself asking: Why is it so important that people not die alone?

Concern over lonely deaths didn’t originate with covid. In 1854, while Britain, France and the Ottoman Empire were at war with Russia, Florence Nightingale worked to ensure that someone stayed with soldiers as they died. Quarantined individuals frequently died alone in the 1918 influenza pandemic and during the AIDS epidemic. “When I was an intern, at least half the patients on the floors were young men with AIDS,” says Evelyn Granieri, emerita professor of medicine at Columbia University. “We would go in there with our hazmat-like suits. And they died alone.”

If anyone understands the need to accompany people as they die, it’s retired nurse Sandra Clarke. On a rainy night in 1986, as Clarke made her rounds at the Sacred Heart Medical Center in Eugene, Ore., a dying patient made a request. He was old, frail, alone, and his organs were failing. He had a do-not-resuscitate order. With a faint and feeble voice, he asked her: “Will you stay with me?”

Yes, she said — as soon as she finished her rounds. For the next 90 minutes, she visited six other patients, assessing vital signs, checking charts, assisting with bathroom trips, providing meds. Finally, she returned to the man’s room. It was too late. “I was angry because I felt so helpless,” she tells me by phone from her home in Oregon. “All he wanted was companionship.”

It triggered the idea for No One Dies Alone (NODA), a program that places volunteers with patients as they die. Clarke modestly calls it “a fancy phone tree,” but the program has saved thousands of patients from a lonely death. One thousand to 1,500 NODA programs exist worldwide, in hospitals as well as prisons — though the pandemic put many programs on hold.

NODA serves dying patients who may not have family. Some are homeless. Sometimes a person has been ostracized by relatives. Loved ones may live out of town. This is a common problem at large facilities like Inova Fairfax Hospital: Patients often arrive from long distances, including other states.

Fear is a big reason people don’t want to die alone — fear of the unknown, fear of finality — but the anxiety often seems stronger during an unexpected, traumatic event. Clarke tells the story of a fellow nurse who treated a 20-something man after a car accident triggered a gasoline explosion. “The nurse who took care of him said he was so afraid,” she recalls. “He said, ‘I’m dying, I’m dying.’ That’s when I think you find the fear factor.” Elderly people in hospice often seem more prepared, even ready, for the inevitability of death. “I think people kind of get over the fear,” Clarke says.

Yet people at all stages of life are social creatures. We want companionship, love and touch. We surround ourselves with loved ones during major life events, and death is the ultimate life event.

Michael T. Manning, a NODA volunteer at Inova Fairfax, once sat vigil with a dying man in his late 70s. The man wanted something and tried to speak, but the words wouldn’t come. “He kept raising his right arm,” Manning says. “He raised his right arm again, and I took his hand, and he squeezed it. He turned his head to me, and he just smiled. And he embraced my hand even firmer. No words were spoken, but there obviously was a connection. And he began to relax. And I said, ‘Okay, you know, we can just sit here and we can hold hands. And I’ll just be here.’ ” The man fell asleep but didn’t die, so Manning left a note for the next volunteer: “He likes to have his hand held.”

Clarke recalls a gentleman who awoke from a coma-like state and wanted everyone to sing. “Boy, this is the most fun I’ve had in a long time,” he declared before dying a few hours later. For many, their social experiences in life influence their needs as death approaches. “We found that a lot of homeless people who were dying alone did not want to be touched,” Clarke says. “But they also didn’t want you to leave the room. Everyone is different.”

In some cases, patients hold on, barely alive, until family arrives from out of town, says Claudia Escobedo, manager of community and volunteer engagement for Capital Caring Health in D.C. Once those encounters occur, patients sometimes die minutes or even seconds later, Escobedo has found. And yet I repeatedly hear about family members who sit for hours with a loved one, take a five-minute bathroom break, and discover the person has died during their brief absence.

“We used to find this in ICU — sometimes patients wouldn’t die until everybody was gone,” Clarke says. “The family would be there for days and days and days, and then everybody left, and suddenly they passed. As though they wanted not to have their family there.”

It’s possible we need family as we’re dying, but not as we die. Yet for those left behind, missing that final moment, that final goodbye, can inflict lasting pain, as Clarke knows firsthand. Many years before she founded NODA, her 9-year-old son was hit by a car. “He lived for three days,” she says. “I had been in the hospital all that time, and the nurses were like, ‘Why don’t you go home, go get a shower, change your clothes, come back.’ And he died while I was gone. The hospital was only like a mile and a half from my home.”

People are social creatures. We want companionship, love, touch. We surround ourselves with loved ones during major life events, and death is the ultimate life event.

As part of my training, I spend an August afternoon with Henry Parker, who volunteers twice a week with Capital Caring at a Providence Health facility in Northeast D.C. The hospital closed in 2019 — its empty parking lots and hallways feel eerie — but Providence still operates an urgent care and a small hospice wing, and I shadow Parker as he works. In one room, an old gentleman’s eyes are open wide, almost bug-eyed, and red, like he’s in shock. The blankets reach his shoulders; he’s so thin that his body seems to vanish beneath the covers. He exhibits signs of imminent death. Blotchy skin. Irregular breathing. Glassy eyes.

His gaunt face will haunt me for weeks. But in my mind, I will also see Parker leaning in, sharing soft words and gently rubbing his arm, providing a stranger with love.

Several years earlier, Parker cared for his dying mother. He fed her, bathed her, met her final needs. He tells me something I will hear from other hospice volunteers: We come into the world with someone. We should leave the world with someone. “She was there for my first breath,” Parker says of his mother. “And I was there for her last.”

I witness a similar end-of-life bond at a home in Dale City, Va. A dying ex-Marine moans from his bed, the sound bellowing above an oxygen machine’s rumble and the wail of Little Richard’s “Tutti Frutti” (hearing remains our most powerful final sense, I’ve been told, and music often accompanies vigils).

A tube hangs from the 89-year-old man’s nostrils. His mouth gapes open, and his eyes are closed. A gurgle interrupts his labored breathing. Congestion is another sign of impending death. The man’s son, his primary caregiver, puts drops in his mouth, then dips a cold compress in water, placing it on his forehead. The father’s protective poodle leans against his bare chest. When the son adjusts his father’s pillows, the dog growls.

Marv Floom, a longtime Capital Caring volunteer and retired Marine, sits next to the bed. He asks if he can read Scripture. The son approves, and Floom reads Psalm 91 from his phone, then Psalm 23. The son wipes his eyes. “Psalm 23 always makes me cry,” he says.

I stay quiet, feeling like an intruder as the two men chat, and I scan the Olan Mills-style photos, the children’s long-ago school pictures, the black-and-white wedding shots on the bedroom walls. Floom has visited once a week for several weeks. The son says that his father has been like this for a few days now. He has stopped eating and drinking. He’s nonverbal.

“It’s just a matter of time,” the son says.

“The problem is that he’s a fighter,” Floom replies.

“I wish he would stop fighting and just go see my mother.”

The old Marine will keep fighting, keep struggling, keep living for three more days, before finally, mercifully, succumbing to death. A few days later, I share the scene with Cindy Crane, a seven-year volunteer with Capital Caring. We sit at a shady table outside of a facility near Fort Belvoir where we’ve visited a resident in assisted living. She shares this reason for why no one should die alone: “Dying is hard work.”

At Inova Fairfax Hospital, Denise Mohess cared for a dying Greek patient who was talking in her bed. Mohess asked the woman’s son to interpret. “He said she was talking to relatives who passed on and she was negotiating,” says Mohess, a physician who founded the NODA program at Inova Fairfax in 2016. “She wanted to wait until she could see her granddaughter.” Within hours of seeing her, the woman died. “It’s a common phenomenon in geriatrics,” Mohess says of these conversations with the dead. “And it’s usually very pleasant.”

As people die, they’re often visited by deceased loved ones in dreams, visions, hallucinations; whatever you call them, the encounters are well documented and quite real to those who experience them. So is it possible that none of us really dies alone? To answer that question, I’ve driven two hours to Charlottesville to meet researcher and psychiatrist Bruce Greyson, professor emeritus of psychiatry and neurobehavioral sciences at the University of Virginia’s Division of Perceptual Studies.

Greyson has studied near-death experiences for nearly 40 years, and I devoured his recent book, “After,” which shares his research on those who almost died. Many near-death experiences involve the well-known tunnel and bright light, and a being that seems like God, though rarely the God of Sunday school, Greyson’s interviewees report. “The vast majority say, ‘The entity that I saw was not like any God I was ever taught about. It was much bigger than what they talked about in my church,’ ” he says. And instead of praying to God, or receiving messages from God, they often feel like they merged with God.

The nearly dead not only meld with a divine entity, Greyson’s interviews found, but they are frequently greeted by a social committee of the deceased. “What I hear repeatedly from near-death experiences is that you don’t have a sense of dying alone,” Greyson says. “You are met by either people you knew who have gone before or entities that seem loving and welcoming.” Half of people who’ve had a near-death experience met someone who had died, his research has found, and “it’s almost always comforting and reassuring.”

Reunions with the dead are also common in hospice settings. Christopher Kerr, CEO and chief medical officer at Hospice & Palliative Care Buffalo, has studied the phenomenon for years. One patient told him that visits from dead relatives were disrupting his sleep. He enjoyed seeing his Uncle Harry, who had been dead for 46 years, but he wished Uncle Harry would quit yakking so he could get some rest.

People who recount their near-death experiences frequently say they felt no worries, no anxiety, no fear as they entered another realm. Perhaps I’m consoling myself, but maybe, rather than feeling scared, my often-nervous mother found serenity on her living room floor. Maybe she felt a bliss in death that escaped her in life. Maybe she was greeted by her father, who died on her 20th birthday. Maybe she saw my dad. Dying might be hard work, as Cindy Crane told me, but maybe death is not.

I’ll never know for sure, however — at least not in this life. And not knowing is exactly why the idea of my mother — or anyone — dying alone is so troubling.

Parker tells me something I will hear from other hospice volunteers: We come into the world with someone. We should leave the world with someone.

Granieri, who began her career during the AIDS epidemic, was pained by patients’ suffering in the spring of 2020 at New York-Presbyterian/Columbia University Irving Medical Center, where she worked as a geriatrician. The hospital was almost entirely filled with covid patients. Delirious, dying old men with dementia would call out the names of their wives. Seventy percent of patients died, she says. Most died alone, though staff sat with patients when they could.

“Among our group, we would say, ‘So-and-so is gonna die today or maybe tomorrow,’ and I was present with a few dozen people either at the moment of death or just before,” Granieri recalls. “There was a lack of PPE, and we still had less than adequate knowledge about transmission, so you were limited in how much time you could spend in someone’s room. The nurses were especially crunched. So the vast majority of people died without anybody at their bedside.”

The lonely deaths, Granieri says, were heart-wrenching. Her voice cracks as she says it. She stops for a moment. “I’m sorry,” she tells me. “I still cry. I cry about it because it just wasn’t right.”

Clarke, the NODA creator, says many volunteers are motivated by similar regrets: A parent or partner died alone, and it feels wrong. “They say, ‘I know I should have been there, so this is my way of doing that,’ ” Clarke says. “But I don’t want volunteers to feel guilty over something they didn’t control.”

I can’t control the past, but I can assist the dying now, even if it’s as simple as holding someone’s hand. At a facility near Oakton, I sit vigil with a 93-year-old man. The bed is tilted at a 45-degree angle, and though the room feels warm, he’s covered by thick blankets. His skin is pale, his mouth open. I introduce myself and he glances at me, only for a moment, before returning to sleep. He knows he is not alone.

Ken Budd has written for National Geographic Traveler, the Atlantic, the New York Times and many more publications. He is the author of the memoir “The Voluntourist.”

https://www.washingtonpost.com/magazine/2021/12/08/obligation-prevent-people-dying-alone/?utm_source=rss&utm_medium=referral&utm_campaign=wp_lifestyle On the obligation to prevent people from dying alone


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