Judith Graham and Oona Zenda
Illustration by Oona Zenda
This summer time, at dinner along with her finest buddy, Jacki Barden raised an uncomfortable subject: the likelihood that she may die alone.
“I have no children, no husband, no siblings,” Barden remembered saying. “Who’s going to hold my hand while I die?”
Barden, 75, by no means had kids. She’s lived on her personal in western Massachusetts since her husband handed away in 2003. “You hit a point in your life when you’re not climbing up anymore, you’re climbing down,” she advised me. “You start thinking about what it’s going to be like at the end.”
It’s one thing that many older adults who reside alone — a rising inhabitants, more than 16 million strong in 2023 — marvel about. Many have household and pals they will flip to. But some haven’t any partner or kids, have relations who reside far-off, or are estranged from remaining members of the family. Others have misplaced pricey pals they as soon as relied on to superior age and sickness.
More than 15 million individuals 55 or older don’t have a partner or organic kids; almost 2 million haven’t any members of the family in any respect.
Still different older adults have turn out to be remoted on account of illness, frailty, or incapacity. Between 20% and 25% of older adults, who don’t reside in nursing houses, aren’t in common contact with different individuals. And analysis reveals that isolation turns into much more frequent as dying attracts close to.
Who can be there for these solo agers as their lives draw to an in depth? How lots of them will die with out individuals they know and look after by their aspect?
Unfortunately, we don’t know: National surveys don’t seize details about who’s with older adults once they die. But dying alone is a rising concern as extra seniors age on their very own after widowhood or divorce, or stay single or childless, in accordance with demographers, medical researchers, and physicians who look after older individuals.
“We’ve always seen patients who were essentially by themselves when they transition into end-of-life care,” mentioned Jairon Johnson, the medical director of hospice and palliative look after Presbyterian Healthcare Services, the biggest well being care system in New Mexico. “But they weren’t as common as they are now.”
Attention to the possibly fraught penalties of dying alone surged through the covid-19 pandemic, when households had been shut out of hospitals and nursing houses as older relations handed away. But it’s largely fallen off the radar since then.
For many individuals, together with well being care practitioners, the prospect provokes a sense of abandonment. “I can’t imagine what it’s like, on top of a terminal illness, to think I’m dying and I have no one,” mentioned Sarah Cross, an assistant professor of palliative drugs at Emory University School of Medicine.
Cross’ analysis reveals that extra individuals die at residence now than in some other setting. While tons of of hospitals have “No One Dies Alone” applications, which match volunteers with individuals of their closing days, related companies aren’t usually out there for individuals at residence.
Alison Butler, 65, is an end-of-life doula who lives and works within the Washington, D.C., space. She helps individuals and people near them navigate the dying course of. She additionally has lived alone for 20 years. In a prolonged dialog, Butler admitted that being alone at life’s finish looks as if a type of rejection. She choked again tears as she spoke about probably feeling her life “doesn’t and didn’t matter deeply” to anybody.
Without dependable individuals round to help terminally unwell adults, there’s additionally an elevated danger of self-neglect and deteriorating well-being. Most seniors don’t find the money for to pay for assisted dwelling or assist at residence in the event that they lose the power to buy, bathe, costume, or transfer round the home.
Nearly $1 trillion in cuts to Medicaid deliberate below President Donald Trump’s tax and spending legislation, beforehand referred to as the “One Big Beautiful Bill Act,” in all probability will compound difficulties accessing adequate care, economists and coverage consultants predict. Medicare, the federal government’s medical health insurance program for seniors, usually doesn’t pay for home-based companies; Medicaid is the first supply of this type of assist for individuals who don’t have monetary assets. But states could also be compelled to eviscerate Medicaid home-based care applications as federal funding diminishes.
“I’m really scared about what’s going to happen,” mentioned Bree Johnston, a geriatrician and the director of palliative care at Skagit Regional Health in northwestern Washington state. She predicted that extra terminally unwell seniors who reside alone will find yourself dying in hospitals, reasonably than of their houses, as a result of they’ll lack important companies.
“Hospitals are often not the most humane place to die,” Johnston mentioned.
While hospice care is an alternate paid for by Medicare, it too typically falls brief for terminally unwell older adults who’re alone. (Hospice serves individuals whose life expectancy is six months or much less.) For one factor, hospice is underused: Fewer than half of older adults below age 85 make the most of hospice companies.
Also, “many people think, wrongly, that hospice agencies are going to provide person power on the ground and help with all those functional problems that come up for people at the end of life,” mentioned Ashwin Kotwal, an affiliate professor of medication within the division of geriatrics on the University of California-San Francisco School of Medicine.
Instead, businesses normally present solely intermittent care and rely closely on household caregivers to supply wanted help with actions resembling bathing and consuming. Some hospices gained’t even settle for individuals who don’t have caregivers, Kotwal famous.
That leaves hospitals. If seniors are lucid, staffers can discuss to them about their priorities and stroll them by means of medical selections that lie forward, mentioned Paul DeSandre, the chief of palliative and supportive care at Grady Health System in Atlanta.
If they’re delirious or unconscious, which is usually the case, staffers usually attempt to establish somebody who can focus on what this senior might need wished on the finish of life and probably function a surrogate decision-maker. Most states have legal guidelines specifying default surrogates, normally members of the family, for individuals who haven’t named decision-makers upfront.
If all efforts fail, the hospital will go to courtroom to petition for guardianship, and the affected person will turn out to be a ward of the state, which is able to assume authorized oversight of end-of-life decision-making.
In excessive circumstances, when nobody comes ahead, somebody who has died alone could also be labeled as “unclaimed” and buried in a typical grave. This, too, is an more and more frequent prevalence, in accordance with “The Unclaimed: Abandonment and Hope in the City of Angels,” a e-book about this phenomenon, printed final yr.
Shoshana Ungerleider, a doctor, based End Well, a company dedicated to bettering end-of-life experiences. She instructed individuals make concerted efforts to establish seniors who reside alone and are critically unwell early and supply them with expanded help. Stay in contact with them frequently by means of calls, video, or textual content messages, she mentioned.
And don’t assume all older adults have the identical priorities for end-of-life care. They don’t.
Barden, the widow in Massachusetts, as an illustration, has centered on getting ready upfront: All her monetary and authorized preparations are so as and funeral preparations are made.
“I’ve been very blessed in life: We have to look back on what we have to be grateful for and not dwell on the bad part,” she advised me. As for imagining her life’s finish, she mentioned, “it’s going to be what it is. We have no control over any of that stuff. I guess I’d like someone with me, but I don’t know how it’s going to work out.”
Some individuals wish to die as they’ve lived — on their very own. Among them is 80-year-old Elva Roy, founding father of Age-Friendly Arlington, Texas, who has lived alone for 30 years after two divorces.
When I reached out, she advised me she’d thought lengthy and exhausting about dying alone and is toying with the thought of medically assisted dying, maybe in Switzerland, if she turns into terminally unwell. It’s one method to retain a way of management and independence that’s sustained her as a solo ager.
“You know, I don’t want somebody by my side if I’m emaciated or frail or sickly,” Roy mentioned. “I would not feel comforted by someone being there holding my hand or wiping my brow or watching me suffer. I’m really OK with dying by myself.”
KFF Health News is a nationwide newsroom that produces in-depth journalism about well being points and is likely one of the core working applications at KFF—an unbiased supply of well being coverage analysis, polling, and journalism. Learn extra about KFF.
USE OUR CONTENT
This story could be republished totally free (details).
