This summer, over dinner with her best friend, Jacki Barden broached an uncomfortable topic: the possibility of her dying alone.
“I have no children, no husband, no brothers and sisters,” Barden recalls. “Who’s going to hold my hand while I die?” »
Barden, 75, never had children. She has lived alone in western Massachusetts since her husband died in 2003. “You come to a point in your life where you’re not going up, you’re going down,” she told me. “You start thinking about what it’s going to be like in the end.”
It’s a question many older adults who live alone — a growing population, more than 16 million strong in 2023 — ponder. Many have family and friends to turn to. But some have neither a spouse nor children, have relatives who live far away or are separated from other members of their family. Others have lost dear friends they once depended on to old age or illness.
More than 15 million people aged 55 or older have neither a spouse nor biological children; nearly 2 million have no family members.
Still other elderly people found themselves isolated due to illness, frailty or disability. Between 20 and 25% of older people who do not live in retirement homes are not in regular contact with other people. And research shows that isolation becomes even more common as death approaches.
Who will be there for these lonely people as their lives come to an end? How many of them will die without the people they know and care for by their side?
Unfortunately, we have no idea: national surveys do not collect information on who is accompanying older people at the time of their death. But dying alone is a growing concern as more older people age alone after widowhood or divorce, or remain single or childless, according to demographers, medical researchers and doctors who care for the elderly.
“We’ve always seen patients who were essentially alone as they transitioned to end-of-life care,” said Jairon Johnson, medical director of hospice and palliative care at Presbyterian Healthcare Services, New Mexico’s largest health system. “But they weren’t as common as they are today.”
Attention to the potentially serious consequences of dying alone increased during the Covid-19 pandemic, when families were excluded from hospitals and care homes due to the deaths of older relatives. But since then, this subject has largely disappeared from the radar.
For many people, including healthcare professionals, this prospect causes a feeling of abandonment. “I can’t imagine what it feels like, on top of a terminal illness, to think I die and I have no one” said Sarah Cross, assistant professor of palliative medicine at Emory University School of Medicine.
Cross’ research shows that more people die at home today than in any other setting. While hundreds of hospitals have “No One Dies Alone” programs, which connect volunteers with people in their final days, similar services are generally not available to people at home.
Alison Butler, 65, is an end-of-life doula who lives and works in the Washington, DC area. She helps people and their loved ones through the dying process. She has also lived alone for 20 years. During a long conversation, Butler admitted that being alone at the end of life seems like a form of rejection. She fought back tears as she perhaps spoke of a feeling that her life “does not and does not have deep significance” to anyone.
Without reliable people to help terminally ill adults, there is also a high risk of self-neglect and deterioration in well-being. Most seniors do not have enough money to pay for assisted living or home care if they lose the ability to shop, bathe, dress, or move around the house.
Nearly $1 trillion in Medicaid cuts planned under President Donald Trump’s tax and spending law, formerly known as the One Big Beautiful Bill Act, will likely worsen challenges in accessing adequate care, economists and policy experts predict. Medicare, the government health insurance program for older adults, generally does not pay for in-home services; Medicaid is the primary source of this type of assistance for people who do not have financial resources. But states may be forced to gut Medicaid home care programs as federal funding dwindles.
“I’m really scared about what’s going to happen,” said Bree Johnston, a geriatrician and director of palliative care at Skagit Regional Health in northwest Washington. She predicted that more terminally ill elderly people who live alone will end up dying in hospitals rather than at home, because they will lack essential services.
“Hospitals are often not the most humane place to die,” Johnston said.
Although hospice care is a Medicare-funded alternative, it is too often not enough for terminally ill elderly people who are alone. (Palliative care is for people whose life expectancy is six months or less.) On the one hand, palliative care is underutilized: less than half of people under the age of 85 benefit from palliative care services.
Additionally, “many people mistakenly believe that hospice agencies are going to provide power to people on the ground and help them solve all the functional problems that arise in people at the end of life,” said Ashwin Kotwal, associate professor of medicine in the division of geriatrics at the University of California San Francisco School of Medicine.
Instead, agencies typically provide only intermittent care and rely largely on family caregivers to offer needed help with activities such as bathing and eating. Some hospices don’t even accept people who don’t have caregivers, Kotwal noted.
That leaves the hospitals. If seniors are clear-headed, staff can talk to them about their priorities and guide them through upcoming medical decisions, said Paul DeSandre, chief of palliative and supportive care at Grady Health System in Atlanta.
If they are delirious or unconscious, which is often the case, staff normally try to identify someone who can discuss what that older person might have wanted at the end of their life and possibly serve as a surrogate decision maker. Most states have laws specifying default surrogates, usually family members, for people who have not named decision-makers in advance.
If all efforts fail, the hospital will go to court for guardianship and the patient will become a guardian of the state, which will assume legal control of end-of-life decision-making.
In extreme cases, when no one comes forward, a person who dies alone may be classified as “unclaimed” and buried in a mass grave. This, too, is an increasingly common phenomenon, according to “The Unclaimed: Abandonment and Hope in the City of Angels,” a book about the phenomenon, published last year.
Shoshana Ungerleider, physician, founded End Well, an organization committed to improving end-of-life experiences. She suggested that people make a concerted effort to identify older people who live alone and are seriously ill early and provide them with increased support. Stay in touch with them regularly via calls, videos or texts, she said.
And don’t assume that all older adults have the same priorities when it comes to end-of-life care. This is not the case.
Barden, the Massachusetts widow, for example, has focused on preparation in advance: all of her financial and legal arrangements are in order and funeral arrangements are made.
“I’ve been very lucky in life: we have to look back on what we have to be grateful for and not dwell on the bad parts,” she told me. As for imagining the end of her life, she said: “It’s going to be like this. We have no control over any of this. I guess I would like someone with me, but I don’t know how it’s going to happen.”
Some people want to die the way they lived: by themselves. Among them is Elva Roy, 80, founder of Age-Friendly Arlington, Texas, who has lived alone for 30 years after two divorces.
When I contacted her, she told me that she had thought long and hard about the possibility of dying alone and was considering medical assistance in dying, perhaps in Switzerland, if she became terminally ill. It’s a way to maintain the sense of control and independence that sustained her as a single person.
“You know, I don’t want anyone around if I’m emaciated or frail or sick,” Roy said. “I wouldn’t feel comforted by someone holding my hand, wiping my brow, or watching me suffer. I’m definitely okay with dying alone.”
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