How COVID-19 changed end-of-life care
Hospitalists have had to find new strategies during the pandemic in order to provide optimal care, including company and comfort, to dying inpatients and their families.
Hospitalists may not be able to work miracles. But despite countless challenges throughout the COVID-19 pandemic, they have often found ways to deliver compassionate care for patients at the end of life.
In New York City, the biggest test came when COVID-19 cases peaked there in April 2020. “We were engaged with three times as many families as we normally would be,” said Joseph Lowy, MD, director of palliative care at New York University (NYU) Langone Health and a clinical professor of medicine at NYU Grossman School of Medicine.
At the peak, all of the 600 or so beds at NYU Langone's flagship Manhattan hospital were filled with COVID-19 patients, and across the health system's three hospitals, many more patients than usual were dying or receiving intensive care.
“The mortality for all three hospitals is usually less than 100 a month, and that went as high as 700 in April, and this is almost entirely COVID,” he said. “We [typically] have a handful of patients on ventilators at any given time. At our peak in April, we had 200 patients in the equivalent of a medical ICU, and 130 were on ventilators.”
With medical care at this fever pitch and visitation restrictions in full force, new strategies were needed to provide optimal care to dying patients and their families.
Maintaining human connection
As the number of COVID-19 patients surged, hospitalists had less and less time to connect with and update patients' families, especially in light of visitation restrictions.
To fill the communication gaps, Katherine Hochman, MD, division director of hospital medicine at NYU Langone Health, launched a new program called Family Connect, which recruited volunteers to remotely reach out to families.
“We had all these people who couldn't see patients: medical students, radiologists were not as busy, orthopedists who couldn't do their surgeries because all elective surgeries were canceled,” said Dr. Lowy.
The volunteer clinicians attended virtual rounds to get updates on the patients they were responsible for, and then they would call those patients' families to convey the information, he explained. The program supported more than 1,700 patient families through May 2020 and was also adapted and implemented by Yale New Haven Health System, according to a case study published in 2020 by Patient Experience Journal.
The early days of COVID-19 “harkened back to past centuries of medicine when physicians might not have had a cure, but they could sit with the patient and the family in their concern and grief and be a source of support,” said ACP Member Alexandra Moretti Morrison, MD, a hospitalist and clinical assistant professor at the University of Washington's Harborview Medical Center in Seattle.
Other clinicians took on the ancient task of preventing patients from dying alone, she noted. “Physicians may make one or two visits in a day, but the nurses and aides are at the bedside multiple times throughout their shift. They often sense when patients are coming to their end and try to be in the room more frequently,” said Dr. Morrison, who also specializes in hospice and palliative medicine.
The moments physicians do have to spend with patients can also provide emotional support at the end of life, she noted. “As a hospitalist seeing COVID patients on comfort care, I intentionally make an extra moment of eye contact [and] hold the patient's hand for a minute longer to foster as much connection as possible through the haze of blue gowns and masks,” Dr. Morrison said.
The pandemic has also changed how clinicians are supporting grieving family members. For several years, the 3 Wishes Project at the University of California, Los Angeles (UCLA), was known for fulfilling small but meaningful requests to honor and memorialize patients who died in the hospital.
But when the pandemic hit in March 2020, Thanh Neville, MD, MSHS, cofounder and medical director of the project, was unsure it was going to continue, and nurses initially held off on fulfilling wishes.
Patients' fingerprints, sealed in a key chain or frame, were the most common gifts given to families, and that was a major concern. “I was terrified of potentially giving a patient's family something infectious,” said Dr. Neville, an associate clinical professor in the division of pulmonary critical care at UCLA.
But as the first weeks of the pandemic passed, she became increasingly determined to continue the program. “More and more I felt like, ‘If anything, this is needed now more than ever,’” Dr. Neville said. “We had to be creative in terms of ways to be able to continue to provide compassionate end-of-life care.”
Dr. Neville and colleagues implemented a protocol to disinfect patients' fingerprints before creating and mailing the keepsakes. “[This] was the same mechanism that we were using to UV irradiate our N95s to reuse them,” she noted, adding that on several occasions, volunteer artists incorporated the fingerprints into paintings of things the patients had loved, such as musical notes and a bale of turtles returning to the sea.
With family members less likely to be at the bedside, such memorial keepsakes became even more common, according to a study by Dr. Neville and colleagues that was published in the October 2021 Critical Care Explorations. The analysis showed that more patients were involved with the 3 Wishes Program as part of their end-of-life care during the pandemic compared to the one-year period beforehand.
For Dr. Neville, one memorable moment underscoring the impact of visitation restrictions was when the 3 Wishes team made an electrocardiogram keepsake with two heartbeats for a daughter whose parents both died in the hospital. “[It] is a double heart, which broke my heart,” she said. “It's the only one that we've ever done, and I hope to never have to do it again.”
Some joyful wishes were also fulfilled during the pandemic, such as a patient who got to see a live mariachi performance before going to hospice and a dying patient who got to be in her son's wedding. But these, too, required adjustments.
“We had to get special infection control permission and were able to bring a band in for a socially distanced concert outside. Everybody was wearing masks, and it was really touching,” Dr. Neville said.
As for the wedding, the 3 Wishes team members again had to get creative. Since they couldn't host it in the ICU or bring in lots of family members like they would have before COVID-19, nurses arranged for the ceremony to be outside and made a wedding arch out of IV poles and hospital sheets.
“It's so remarkable what they've been able to do, despite our restrictions. … We also fully acknowledged that a lot of times, it was also for us. … It was so helpful to be able to contribute in a small way to health care workers who were stressed during these times,” said Dr. Neville, adding that other hospitals have expressed interest in creating their own 3 Wishes programs.
Learning ‘webside’ manner
Many hospitals, such as Veterans Affairs (VA) medical centers, restricted visitors during the pandemic but permitted in-person visitation whenever possible for patients who were imminently dying.
Still, 27% of surveyed family members of 328 veterans who died in one of 37 VA medical centers' acute care, intensive care, nursing home, or hospice units reported that they were not allowed in to see the patient at the end of life, according to study results published in December 2020 by the Journal of the American Geriatrics Society.
However, the bereaved family members reported that they valued the use of video-enabled remote technologies, such as bedside tablets, when visitation was restricted. They said such technologies allowed them closure and helped to ease end-of-life transitions and also noted the importance of support from staff in their use, said lead author Shelli Feder, PhD, an assistant professor in nursing at the Yale School of Nursing and a researcher at the Pain Research, Informatics, Multi-Morbidities, and Education Center at the VA Connecticut Healthcare System, both in West Haven, Conn.
“Effective communication is so important between hospitalists, patients, and their families at the end of life,” she said. “The COVID-19 pandemic has revealed that even under restrictive visitation policies, this type of communication can still occur with the help of remote technologies.”
Such virtual conversations require a skilled “webside” manner to maintain an empathetic connection with patients and families, according to a study published in October 2020 by the Journal of Palliative Medicine. For instance, clinicians often say “mm-hmm” to show they are listening, but this can disrupt the flow of a virtual meeting; a better tactic on video is to verbally paraphrase the words or feelings back to the speaker, the researchers noted.
Family meetings conducted over video applications have been both a challenge and an asset during the pandemic, said Dr. Morrison. “On one hand, having these tough conversations via any kind of technology is challenging: Images freeze at crucial moments, calls get dropped, delays make the flow feel choppy, and there isn't the warmth and energy of being in the same room,” she said.
Yet, having this technology allowed essential connection between medical staff, patients, and their loved ones, including those far away or with their own medical or social issues that might have made participating in person difficult even without visitor restrictions, Dr. Morrison said. “I think video conferences will continue to be a useful tool even after pandemic restrictions are lifted,” she said. “I found them invaluable with my own family member during their recent hospitalization.”
Video call technology has been very helpful for end-of-life conversations, agreed ACP Member Jacob A. Varney, MD, an academic hospitalist and assistant professor of internal medicine at Southern Illinois University School of Medicine in Springfield who also specializes in hospice and palliative medicine.
“Nonverbal communication adds so much meaning and context to the words we say. It has allowed family members to see their loved ones with their own eyes,” he said. “When the patient's condition is deteriorating, this helps the family realize the severity of the situation and take appropriate next steps.”
It is more difficult, however, for clinicians to read family members' body language over video than in person, and family members can't always appreciate the medical care their loved one is getting, noted Anthony Back, MD, a professor of medicine at the University of Washington School of Medicine in Seattle who researches patient-clinician communication.
When families are sitting in the hospital for hours or days, they better understand how hard the care team is working, he said. “It's much easier for a family member to be suspicious that the team isn't doing everything if they've never been in the room. They just don't see all that care and all that technical attention,” said Dr. Back, who is a subspecialist in hospice and palliative medicine, medical oncology, and general internal medicine.
As cofounder of the nonprofit VitalTalk, Dr. Back for years has provided free tips, scripts, and video demonstrations for communicating with seriously ill patients and their families. After COVID-19 hit, he and colleagues offered pandemic-specific tips in an article published in June 2020 by Annals of Internal Medicine, such as the importance of addressing patients' and families' fear, sadness, and anxiety rather than giving lots of information.
The pandemic has increased hospitalists' focus on anticipating potential decline in a patient's condition and engaging the patient and family to determine the best options for treatment in light of the patient's values, said Dr. Varney.
“Providers are more apt to inquire about what patient may or may not be willing to go through in the hope of treating reversible conditions,” he said. “I hope that these changes are persistent after the pandemic.”
COVID-19 also increased the number of conversations about death and dying that clinicians have with younger, previously healthy patients, Dr. Morrison noted. Going forward, she said she hopes that more of these conversations happen before patients are seriously ill.
“The pandemic has brought about a shared sense of the fragility and unpredictability of life. There is more widespread understanding of how health can deteriorate rapidly and unexpectedly,” she said. “I hope COVID will prompt more people to have these conversations with their families and primary care doctors before they have a reason to be hospitalized.”