As Covid-19 patients started to flood New York City’s hospitals, Claire Ankuda and Chris Woodrell, palliative care doctors at Mount Sinai Hospital, realized they were going to need backup.
Palliative care physicians work with people who are chronically ill to improve their quality of life while they receive treatment and start to prepare for end-of-life care. Those patients usually have months or years to come to terms with their diagnosis. But Covid-19 is different. “We’re seeing people in the hospital who got sick very rapidly,” says Ankuda. Patients are scared and lonely, and families can’t be present because of hospital visitation rules. “In many cases during the Covid pandemic, we were helping people with decisions about end-of-life care,” says Woodrell. “Often that was coming as a surprise.”
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Even more challenging: During the height of the pandemic in New York City, there weren’t enough palliative care physicians at Mount Sinai to treat all the patients who needed their support. So in March, Ankuda and Woodrell set up a call line, each working in 12-hour shifts, so that doctors in the emergency rooms at six hospitals could reach them and connect them to families who needed their assistance. Within two weeks, call volume was so high they had to enlist palliative care doctors from across the country to handle the demand; their line ultimately served nearly 900 very sick patients in four weeks. (Once case numbers dropped substantially in New York, they were able to put the line on hiatus.)
Palliative care treats both the physical and emotional suffering of people who are seriously ill. The department at Mount Sinai includes doctors, nurses, art and massage therapists, and chaplains who all work together to improve patients’ quality of life and give them more control over their own treatment. Doctors treat symptoms and alleviate physical discomfort, but they also have conversations with their patients about decisions like whether they are ready to stop treatment and transition to hospice care. Do they want to have a feeding tube? What brings them joy in life? At what point will their life no longer be a life they want?
Physicians on the Mount Sinai call line had to quickly understand who each patient was, how severe their infection was, and what they and their family wanted—all from a distance. For Covid-19 patients, the doctors were treating physical problems, like patients who felt they couldn’t breathe, but also loneliness and anxiety. When patients were too sick to make decisions about their care, the doctors talked to family members about whether to intubate them and what procedures would be too invasive.
But in the midst of those difficult moments, Ankuda and Woodrell were excited to discover that they could have these serious conversations and treat patients effectively over the phone. “There is amazing potential for tele-palliative care to bring people together in new ways and in very joyful and surprising ways,” says Ankuda.
Tele-palliative care is not new, but before the pandemic, patients and doctors were slow to adopt it. Some patients were reluctant, thinking the quality of care wouldn’t be as good as an in-person visit. And doctors were hesitant. Could they really establish trusting and compassionate relationships from a distance?
Now, like so many other tele-health specialities, the technology has taken off. Patients like how easy it is to connect, and doctors who have never tried connecting virtually before are excited about using the technology to reach more people. “One of the problems we have in palliative care is that there aren’t enough of us,” says Ankuda. That means patients, especially minorities, immigrants, and people who live in rural areas, often don’t get equal access to care. “We’re both really interested to continue that work and to take the lessons we’ve learned and see what works beyond the pandemic.”
Eric Widera, a geriatrician at the University of California San Francisco, has practiced palliative care for over a decade. He says he’s used to having difficult conversations with patients, but never from 3,000 miles away. He helped treat patients by phone at Columbia University Irving Medical Center/New York Presbyterian Hospital, which saw a seven-fold increase in requests for palliative care consultations during the height of pandemic in New York. “I was incredibly worried and anxious going into these consultations,” he says. “I can’t even see the patient. What the heck am I doing here?” But once he got on the call and started talking to family members, Widera says those problems faded away. “When you’re one on one with that family member—it feels really familiar, and it feels like I’ve been doing it for a long time.”
In addition to relying on a phone line, Ankuda also used Zoom to connect patients in the hospital with loved ones who weren’t allowed to visit but who had to help make decisions about care. “These serious medical situations would turn into joyful family reunions,” she says. The technology allowed her to involve more family members than she otherwise could, including people who live out of state or in other countries.
Maria Silveira, an associate professor at the University of Michigan and codirector of the palliative care program at the VA Ann Arbor Healthcare System, started using tele-palliative care almost five years ago. “I didn’t initially think it was a great thing,” she says, because palliative care is a “high-touch” speciality. She uses a lot of nonverbal cues like sustained eye contact or hand holding to convey empathy and compassion when she’s talking to patients and families. “I really was skeptical that I could do it,” she says of creating those same connections through virtual care.
But she’s found those intimate moments can still happen over video calls and that those virtual visits have their own unique benefits. People receiving palliative care are usually very sick. Getting ready to leave the house, riding in a car, and going through all the clipboards of paperwork at the doctor’s office can be draining. Without the onus of coming into an office, Silveira can check in more frequently. “That allows you to be more in the moment,” she says.
Usually in-person visits happened only once every three months, and Silveira often felt like she was playing catch-up, trying to understand what had changed since she last saw her patient. With virtual visits, she can check in every month. “Those contacts may be shorter, but that allows me to develop a more robust relationship with them over time,” she says.
Since she can’t use touch, she now relies on storytelling to bond with the family and the patient. By listening and taking an active interest, Silveira can show she cares about this person, develop trust, and convey compassion. It can take a bit longer, but she says it works. The same strategy worked for Ankuda when she was treating Covid-19 patients in the emergency room over the phone line. “Emphasizing storytelling early on was so important to gain information that we would have more organically gained in person, and to develop a relationship with the people we were on the phone with,” she says.
And while some patients were initially hesitant to sign up for virtual care, the pandemic has made them realize that the quality can be just as good as an in-person visit. “It forced us to recognize this isn’t that bad,” says Silveira. “From the perspective of not burdening people to come in, families are starting to realize maybe this is a better thing.”
For doctors who see patients in their homes, tele-health allows them to see many more patients. “One of the challenges is your ‘windshield time’”—all the time you spend in a car, says Bethany Snider, chief medical officer at Hosparus Health, a nonprofit that delivers in-home palliative and hospice care to patients in Indiana and Kentucky. Hosparus had already piloted a tele-health system before the pandemic hit, but Snider says coronvirus pushed the organization to speed up adoption. Their group now treats 1,500 people a day virtually.
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Michael Fratkin, who has practiced tele-palliative and hospice care for five years in rural Northern California, also says virtual visits are more efficient. Seeing a doctor over the computer frames visits in a more focused, purposeful way. It’s easier, he says, “to dive into the work itself.” After all, in-person visits can introduce asymmetrical power dynamics that make people uncomfortable. Patients have to clean their house to prepare for a home visit, and it can be awkward for the doctor to find a natural, polite time to leave. Fratkin finds virtual visits go much more smoothly. “You can actually accomplish much more with less time, with totally adequate intimacy,” he says.
And in some ways, Fratkin believes that separation is important for care providers too. He compares palliative care doctors to the capacitors in circuits. The more surface area and the closer the two plates of a capacitor are, the more energy they’re able to store. Similarly, the more of themselves doctors bring to their patients, and the closer they get, the better their relationship and the care they provide will be. But if the plates of a capacitor touch, the magic is gone. Suddenly it’s just a circuit. The same is true of doctors: Getting too close to patients can ruin that relationship. “The trick is to manage the amount of yourself you bring to the encounter,” he says. Tele-health platforms give doctors an invitation to connect and create intimate relationships with people thousands of miles away. But they can also help maintain that necessary separation.
While tele-health adds a lot to their practices, neither Snider nor Silveira are ready to give up in-person visits just yet. It’s harder for doctors to tell what’s happening if they can’t physically examine a patient. And the technology can sometimes be a real problem. Silveira has battled glitchy platforms and struggled to help patients install the necessary software on their home devices. Plus, not everyone has a great internet connection. “There is a portion of Kentucky that has limited access to high-quality high-speed internet, and that does create a barrier,” says Snider. That hasn’t affected a huge percentage of Hosparus’ patients yet, but it’s a concern as tele-health starts to expand.
But Fratkin is ready to go all-in. “I’m not going back,” he says. His practice, ResolutionCare, normally mixes virtual and home visits, but during the pandemic he went 100 percent virtual to reduce the risk of spreading the virus. “Our patients, the people we care for, didn’t notice,” he says. And he doesn’t worry about connectivity. If patients don’t have good internet, he’ll arrange the installation of a better connection, hook up a satellite dish, or loan out devices to those who need them. Those initial costs might seem high, but they end up having big payouts. “If we avoid one emergency department visit by managing a set of symptoms early and at home, we’re killing it on the numbers game,” he says.
At its best, doctors say tele-health can help bring more family members into conversations and create supportive, loving environments for people struggling with hard questions about prognosis, treatment, and mortality. “Virtual touch and interaction still adds love and support and gratitude and joy,” says Snider. “It’s just a matter of us leaning into that.”
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