Increasingly common ancestral fear: ‘I will die alone’

This summer, over dinner with her best friend, Jackie Bardeen talked about an uncomfortable topic: the possibility of dying alone.

“I have no children, no husband, no brothers,” Bardeen recalls saying. “Who will hold my hand when I die?”

Barden, 75, has never had children. She has lived alone in western Massachusetts since her husband died in 2003. “There comes a time in life when you don’t go back up, you start going down,” she told me. “And you start thinking about what the ending will be.”

This is something many seniors who live alone wonder about, and they do Exceeds 16 million people This continues to grow. Many have family or friends. But others have neither a partner nor children; Their relatives live far away or are far away from the few relatives they have left. Some have lost, through age or illness, very dear friends.

More than 15 million people over the age of 55 do not have a spouse or biological children; Nearly 2 million have no family.

Other elderly people are isolated because they are sick, frail or have a disability. Nearly one in 5 Has little or no contact with others. Research shows that isolation becomes more common as death approaches.

Who will be with these people who grow old alone when they reach the end of their lives? How many of them will die without anyone who knows or loves them by their side?

Unfortunately, we don’t know: national surveys do not identify who accompanies older people when they die. But dying alone is a growing concern, as more and more people reach old age without a partner, become widowed or divorced, or remain single or childless, according to demographers, researchers and doctors who specialize in caring for the elderly.

“We always had patients who were pretty much on their own when they reached the end of their lives,” said Jerron Johnson, medical director of hospice and palliative care at Presbyterian Healthcare Services, New Mexico’s largest health system. “But back then it wasn’t as popular as it is now.”

During the COVID-19 pandemic, families were unable to enter hospitals or nursing homes when their older relatives died. It was a period in which most attention was paid to the potentially serious consequences of a person dying alone. But since then, the issue has largely fallen out of favor.

For many, including health workers, the prospect of dying unaccompanied causes a feeling of abandonment. “I can’t imagine what it must be like, other than having a terminal illness, to think: ‘I’m dying and I don’t have anyone,’” said Sarah Cross, an assistant professor of palliative medicine at Emory University School of Medicine.

According to Cross’s research, today most people die at home. But although many hospitals have programs called “No One Dies Alone,” where volunteers accompany patients in their final days, there are no similar services for those who die at home.

Allison Butler, 65, is an end-of-life doula living in the Washington, D.C., area. It accompanies people and their loved ones through the dying process. She has also lived alone for 20 years. In a long conversation, Butler admitted that she felt the idea of ​​dying alone as a form of rejection. She choked back tears as she spoke about the possibility of feeling like her life “doesn’t really matter and doesn’t really matter” to anyone.

The lack of trusted people who can help terminally ill adults can also lead to abandonment and decreased well-being. Most seniors do not have the financial resources to pay for assisted living or assistance at home if they can no longer shop, bathe, dress, or move around their homes on their own.

Economists and public policy experts warn that nearly $1 billion in cuts to Medicaid under President Donald Trump’s tax and spending law, which Republicans call the Big Beautiful Bill Act, will likely exacerbate difficulties in accessing adequate care.

Medicare, the federal health insurance program for seniors, generally does not cover home services. The main source of this type of assistance for those without financial resources is Medicaid. But states may have to eliminate Medicaid-funded home care programs as federal funding declines.

“I’m very afraid of what might happen,” said Bree Johnston, a geriatrician and director of palliative care at Skagit Regional Health in northwest Washington state. She is convinced that more seriously ill elderly people who live alone will end up dying in hospitals because they will not be able to access basic services.

“Hospitals are not usually the most humane place to die,” Johnston said.

in spite of Palliative care in centers It is a covered alternative to Medicare, but it is often not enough for seriously ill seniors who live alone. (Palliative care is for people with a life expectancy of six months or less.)

On the one hand, this service is underutilized: less than half of adults over 85 use it. On the other hand, “many people mistakenly believe that home agencies will provide in-house support staff and help with all the functional issues that arise at the end of life,” explained Ashwin Kotwal, MD, assistant professor of medicine in the department of geriatrics at the University of California-San Francisco School of Medicine.

But in reality, these agencies provide intermittent care and rely heavily on family members who can help with activities such as bathing or feeding. Some agencies won’t even accept people who don’t have caregivers, Kotwal said.

Then there are the hospitals. If an older person is conscious, staff can talk to them about their priorities and help them make important medical decisions, explained Paul DeSander, chief of palliative and supportive care at Grady Health System in Atlanta.

If the person is disoriented or unconscious, which is common, staff try to identify someone who can find out what the patient wants at the end of their life and perhaps serve as their legal representative. Most states have laws appointing pre-selected representatives, usually family members, for those who have not previously chosen one.

If no one is found, the hospital goes to court to request legal guardianship, and the patient becomes under the guardianship of the state, which bears legal responsibility for end-of-life decisions.

In extreme cases, when no one responds, a person who dies alone may be classified as “unclaimed” and buried in a mass grave. This is also becoming more common, according to the book “Unclaimed: Abandonment and Hope in the City of Angels,” published last year.

Dr. Shoshana Ungerleider founded End Well, an organization dedicated to improving end-of-life experiences. She suggested identifying older people who live alone and suffer from serious illnesses early and provide them with broader support. He recommended staying in touch with them regularly through calls, video calls or text messages.

He noted that not all elderly people have the same priorities at the end of life. Every one is different.

For example, Bardeen, a widow in Massachusetts, focused on preparing in advance: she had already organized all the legal and financial matters, as well as her funeral affairs.

“I’ve been very lucky in life. You have to look back and be grateful for the good things, instead of focusing on the bad,” she told me. Regarding imagining his death, he commented, “It will be as it should be. We have no control over those things. I think I would like someone to be with me, but I don’t know what it would be like.”

Some people want to die as they lived: alone. One of them is Elva Roy, 80, founder of Age-Friendly Arlington in Texas, who lived alone for 30 years after being divorced twice.

When I spoke with her, she told me that she had often thought about dying alone, and was considering the option of a medically assisted death, perhaps in Switzerland, if she became terminally ill. It’s a way to maintain the sense of control and independence that has supported her throughout her life as an older adult.

“Honestly, I don’t want anyone by my side if I’m emaciated or weak or sick,” Roy said. “It wouldn’t comfort me to have someone holding my hand, wiping my forehead, or watching me suffer. I feel good about the prospect of dying alone.”