28 DECEMBER 12, 2021 THE WASHINGTON POST MAGAZINE 29
“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.”A
s 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 breath-
ing. 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.”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 inevitabili-
ty 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.C
oncern 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 theyI 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 wom-
an’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 also 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, sur-
rounded, 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?
People are social creatures.
We want companionship,
love, touch. We surround
ourselves with lovedones during major life
events, and death is the
ultimate life event.