Lonely COVID-19 Deaths Lead to Repositioning Palliative Care

Kate Johnson

May 21, 2020

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

Her COVID-19 patient was close to death. Jennifer Holton, RN, had to tell his large family via a conference call. They wanted to be with him, but the logistics were complicated.

Instead, Holton, a 22-year-old in her first year as an ICU nurse at Houston's Baylor St. Luke's Medical Center, offered to pray. "I said, 'Rather than me just going in there and saying your family is missing you, why don't you all give me your names and I'll go in there and pray with him,' " she told Medscape Medical News.

The patient's son recited the names of the grieving family members to her. She wrote them down, went into the patient's room, and mentioned each one aloud to the unconscious man. After he died, she comforted the family with the story of her prayer.

Holton chose to start her career with night shifts so she could have more hands-on learning, but with the pandemic, she got a lot more than she bargained for. Already in her first year she has seen more deaths and sicker patients than she ever expected — but it's the absence of patients' families that is the hardest. "We usually don't have as much resources at night, so it's usually just us nurses doing the palliative care — even the chaplains can't really come…. I don't think anyone could have been prepared for this," she said.

Now perhaps more than ever, palliative care teams are needed to guide their colleagues through the unfamiliar business of "organizing" death, but often the teams can't get access or the necessary PPE to be physically present where they're needed.

COVID-19 Not Aligned With "Traditional Pathways"

Paradoxically, even with its intensity of suffering, COVID-19 "is not aligning with the traditional pathways of where palliative care gets involved," acknowledged James Downer, MD, head of the Division of Palliative Care at the University of Ottawa in Canada.

"The big challenge for us is to be as nimble and adaptable as we can to get palliative care in these nontraditional settings like emergency, ICU, and long-term care," he told Medscape Medical News.

Until that happens, experiences like Holton's, of clinicians feeling alone with dying patients and having little training in end-of-life care, are being expressed by clinicians around the globe. "There are institutions where ER and ICU docs are having to take this on," said Sunita Puri, MD, medical director of the Palliative Medicine and Supportive Care Service at the Keck Hospital and Norris Cancer Center, University of Southern California, Los Angeles. "There are many hospitals that don't have either a full palliative care team or any team at all, or there might just be just one nurse practitioner, or there is simply not enough time to get another physician involved," she told Medscape Medical News.

Indeed, for doctors and nurses who are unaccustomed to filling palliative roles, the pandemic is exposing deficits in medical training that are "causing even more distress for everybody involved with COVID patients," Puri added. "What we're seeing now is that ER docs, ICU docs, really doctors of every specialty are encountering their absence of training around goals of care discussions and symptom management," she said.

Need for Universal Palliative Care Education

"We call that primary palliative care, which is a skill set all doctors should have. The need for that universal education has really been brought into focus with this pandemic," Puri said.

In the absence of palliative care experts, there are still many resources designed to help nonpalliative clinicians through the tough spots. Downer, of the University of Ottawa, and his group have provided some guidance in a recent article in the Canadian Medical Association Journal, where they outline suggested language for various end-of-life situations, including a description of palliative medication kits.

"There are certain things you cannot reasonably expect people who don't do palliative sedation on a regular basis to be very good at," he said. "Everybody should have access to some standard order sets and protocols."

Hospital administrators can also access and distribute a serious illness conversation guide or resources from Vital Talk, which have "suggested language, almost like a script, to help clinicians deal with these situations, to equip them," Puri added.

Supporting Colleagues

One area where palliative experts can play an active role is in supporting their colleagues, Puri pointed out. "I think a lot of healthcare systems are now coming to realize what an important role we play in supporting not just patients and families, but even the medical staff when we are encountering mass tragedy, which is what we're encountering as a nation now," Puri continued. "I also think it's the obligation of hospital administrations to provide emotional support to physicians on the front line — treating the distress physicians feel when they're forced into the role of having discussions they may not be comfortable with."

That distress often overflows in emotional tweets, such as a series from Arnav Agarwal, MD, an internal medicine resident at the University of Toronto, after he connected a dying COVID-19 patient with 15 family members through FaceTime. "I switched the video call off, doffed, and left the room. Then I took some time on a busy Friday to cry," Agarwal tweeted. He later removed the emotional outburst from social media, but it had already been reported in the media.

Emergency medicine physician Craig Spencer, MD, does not mince words in his tweets. "This is something we are NOT used to in the ER," he wrote after a particularly tough shift at New York–Presbyterian/Columbia University Medical Center. "We are trained to save lives. Not to plan on how to peacefully withdraw care."

https://twitter.com/Craig_A_Spencer/status/1248837626213404673

Taking care of the dying during this COVID-19 pandemic has taken clinicians into "uncharted territory," a team of residents wrote in a recent essay in the New England Journal of Medicine. Regarding their work in community ICUs around Detroit, one of the US epicenters in late March and early April, Glenn Wakam, MD, and three colleagues write they had "witnessed more death in the past 3 weeks than in all our previous years combined."

Describing a case in which a wife was denied access to her dying husband and finally viewed his dead body by FaceTime, they write, "Unfortunately, similar stories are becoming more common and represent uncharted territory for many of us, as we try to maintain our humanity and patient-centeredness while managing these difficult situations."

Too often, clinicians are left feeling "like there must be a better way," they write.

This is illustrated by a tweet from Spencer, the New York ER specialist, who questioned, "Are we doing the right thing? Are we having an impact?"

https://twitter.com/Craig_A_Spencer/status/1250240263529861122

Kate Johnson is a freelance journalist based in Montreal. She has also written for the New York Times; the Canadian Broadcasting Corporation; MDedge, part of the Medscape Professional Network; Men's Journal; Allergic Living Magazine; and others. She can be reached at kkatejohnson@aol.com.

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