End-of-Life Care Disrupted in COVID-19 Crisis

Christina Bennett

May 28, 2020

Editor's note: Find the latest COVID-19 news and guidance in Medscape's Coronavirus Resource Center.

An elderly man with congestive heart failure was getting worse, but fear of going to the emergency department during the COVID-19 public health crisis kept him at home.

Fred Rubin, MD, the man's geriatrician, talked with him and his wife on a video call, and together they decided that instead of going to the emergency department, he would go on hospice care and be made as comfortable as possible at home. The next day, however, he died.

"I spoke to his wife and she felt that his death was relatively comfortable," said Rubin, who is chair of the Department of Medicine at UPMC Shadyside in Pittsburgh. The wife felt that that was the best death he could have had and was happy that he did not go to the emergency department.

"He died with her holding his hands at the bedside," he told Medscape Medical News.

Disruptions to end-of-life care have become all too common during COVID-19, with some patients even being separated from loved ones at the time of their death.

"We've had patients pass away in the hospital, not from COVID, and the bereavement and the inability to have closure at the end of life is really difficult," said Joshua Uy, MD, a geriatrician at Penn Medicine in Philadelphia.

"People feel guilty that they couldn't be with their loved ones or are just angry that this pandemic has separated them from their loved ones at the end of life," he told Medscape Medical News.

Uy recalled a patient with mild dementia and schizophrenia who was admitted to the hospital with COVID-19. Her daughter — who had been her lifelong advocate — wasn't allowed to be present when she died. "She's been advocating for her mother her whole life, and then, when her mother needed her most, she couldn't be there," he said.

"We don't know this yet, but I'm pretty sure that the separation at the end of life is going to have consequences," he added.

She's been advocating for her mother her whole life, and then, when her mother needed her most, she couldn't be there.

Although advance care planning and understanding what a patient values most has always been important in geriatric care, COVID-19 has "intensified" that process, said Audrey Chun, MD, professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York City.

The amount of counseling and the effort it takes to identify what is important to the patient so that next steps can be determined if a person gets sick have become "much more" complicated, she told Medscape Medical News. Patients who want to pursue trial therapy for their conditions have to decide whether it is worth being in the hospital alone, without visitors and their usual support system.

"What's most important to that older adult and their family is more important than ever before," echoed Angela Catic, MD, assistant professor at the Huffington Center on Aging, Baylor College of Medicine, in Houston.

End-of-life care is not all that has changed for elderly people. They are not going to restaurants or places of worship, and family celebrations — like weddings, bar mitzvahs, and christenings — are not taking place.

Social Isolation

"What's very important to elderly people is family, and they're cut off from their family and from family events," Rubin said. The "big thing" he worries about for his patients is the social isolation they may face at home.

A tip sheet to help seniors combat social isolation at home — 12 Ways To Ease Isolation While You're Practicing Social Distancing — created by the American Geriatrics Society Health in Aging Foundation, offers suggestions like going outside, staying in touch with loved ones by phone, mail, or email, and having a device that supports video communication with apps like FaceTime or Skype.

"We're social creatures, and that's why in geriatrics we put so much emphasis on physical, not social, distancing," Catic told Medscape Medical News.

And social disconnection can increase the risk for depression and anxiety in older adults, according to a 2020 study, and can lead to a decline in cognitive function, as reported in a 2013 study. Staying home also might mean that people become less active.

For patients isolated in the hospital, disruptions to the Hospital Elder Life Program (HELP) for the prevention of delirium have only added to the situation. The HELP program is used by more than 200 sites of care in 32 states and 11 countries, and consists of various interventions — such as social visits, daily exercise, and cognitive stimulation — to help at-risk older adults maintain cognitive and physical functioning while in the hospital.

Before COVID-19, the interventions were typically done by volunteers, but those volunteers are no longer allowed in hospitals.

"All over the United States, health programs have been sort of frozen out because we can't send our volunteers to the bedside like we normally do," said Rubin, who is the head of the HELP program at UPMC Shadyside.

UPMC Shadyside is adapting by using paid staff in place of volunteers, which means they serve fewer patients. They are also lending patients iPads and smartphones so that they can FaceTime with family members, the nurse at the nursing station, or a different health worker. "Just somebody so that they're less isolated," Rubin explained.

Although COVID-19 has disrupted life for elderly people and the way they are cared for, their outlook is far from dismal.

"These are individuals who have a lot of life under their belt, a lot of accumulated wisdom," said Catic. "They've been through hard things before and, really, they're looking to see how they can help others and how they can reach out and contribute meaningfully to their community while still maintaining physical distancing."

Elderly people are helping the community in a variety of physically distant ways, such as sewing masks. "Older adults are a vibrant part of our community," she said.

American Geriatrics Society (AGS) 2020 Annual Scientific Meeting.

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