The experience of hospitals with significant surges of severely ill COVID-infected patients has delivered a powerful marketing case for the future of palliative care beyond the current pandemic, experts say.
"There wasn't a cure for COVID, and we had only minimally effective treatments. But with palliative care we can always ensure human connection and relieve suffering. Now everyone understands it better than before," said Diane Meier, MD, director of the Center to Advance Palliative Care at Mount Sinai in New York City.
While studies have shown that palliative care improves quality of life and reduces caregiver burden, not everyone can access it, "partly because we don't have enough clinicians, services, and programs -- especially for people outside of the hospital who are seriously ill but not hospice-eligible," she said.
Enter telemedicine, which can dramatically increase access for people in community settings, at home, in assisted living facilities, in long-term care, Meier said. One clinician can see 8 to 10 seriously ill patients a day at multiple sites without leaving the office -- exponentially increasing access.
It's not only more efficient for the clinician, it expands access for patients who can get to the clinic only with difficulty because they are homebound, live miles away or constrained by geographical barriers, or depend on public transit.
At the height of the COVID surge in New York City, three large health systems separately recruited and deployed palliative care and other professionals from across the country to serve as back-up volunteers to hospital teams on the ground. They gave debriefings for frontline providers, held family meetings and goals-of-care conversations online, even offered psychological and grief support.
"We have made huge strides toward building palliative care into the healthcare system focused on the broad concept of improving quality of life, recognizing that serious illness can turn one's life upside down," says Ashwin Kotwal, MD, assistant professor of geriatrics at the University of California San Francisco. "It's not just about end-of-life support but addressing physical symptoms throughout the disease trajectory, along with psycho-social and spiritual needs. And communication is a big part of what we do."
Kotwal spent the last year building a tele-palliative care program at the San Francisco VA Medical Center, focusing on patients who were homebound or who lived four hours or more from the clinic. Then COVID came along.
There was a time not long ago when sharing bad news such as a terminal prognosis via a computer screen was controversial, he said, citing news coverage of an when such a disclosure made by a doctor on a computer screen attached to a "robot" -- a rolling cart in the hospital -- angered the patient's granddaughter.
"Now we're in a situation where that's more the normal way. But we have to make sure it's not just a substitute for in-person care but a service that adheres to quality standards." That includes principles of good, effective communication, Kotwal said.
"I've witnessed poor communication of bad medical news in person. I've also seen how it's possible to build rapport online. Whether I'm communicating in person or online, I'm listening, processing things. I have to be intentional about what I say, trying to normalize the emotional experience for the patient," he said.
For example, if there's a time lag or an echo on the audio feed, that makes it harder to share bad news. "Sometimes the video goes out and I'll pick up the telephone -- or else try again later."
Beyond discomfort with the communication technology and inadequate internet infrastructure and access in some localities, there are also barriers for people who are hearing or vision impaired, cognitively impaired, or facing language barriers. Another key is whether palliative care professionals can be accessible to families 24/7 to address concerns and symptom crises that arise in patients' homes after hours.
For Michael Fratkin, MD, founder and CEO of Resolution Care Network in Eureka, California, the telemedicine encounter is not just more convenient, it's superior.
"The heart of the matter is the preservation of boundaries in healing relationships. We find that a video visit in real time is substantially better than invading people's homes," he says. "This is such a leveling technology. Something about the framing of the computer screen sets limits and puts us more on the same level. Clients show me only what they want to show me in their homes. It keeps the boundaries clearer."
What happens on these visits for Fratkin's community-based palliative care service, which covers a large rural area: trust-building; goal setting; shared-decision-making; advance care planning; symptom management. Surprisingly, he says, there are greater opportunities for intimacy in this encounter, even though the clinician can't reach out and put a hand on the patient's shoulder.
"People love it. Families love it. Even those over 85 who said 'we can't do this' learn to love it," said Dana Lustbader, MD, chief of palliative medicine at ProHEALTH, a multispecialty medical group in the New York City area. "When it's coached and taught and there's access to the internet, it's a game changer."
Lustbader's program practices the connection ahead of the actual visit with the clinician, making sure the patient and/or family members are able to get online.
"And like other medical encounters, it's good to work from a checklist," she said. "I follow a script, so I don't forget anything. The first thing I do is to acknowledge that we are here together, and give us all permission to focus on each other, not on the technology."
Of course, the future of telemedicine in palliative care will depend on reimbursement. Currently, temporary emergency Medicare waivers, , have allowed payment for professional telehealth and some telephone visits, including physicians' advance care planning conversations with patients and families. The emergency will end eventually, but at least 20 bills have been introduced in Congress to make some aspects of telemedicine coverage permanent.
After the current crisis fades, Fratkin predicts, "We'll see plenty of palliative care programs regressing to the old ways. Some will build a hybrid model, using telemedicine to improve access and efficiency while making home and office visits for those who would benefit from them. A few programs like ours, that are all in on telemedicine -- there's no way that the experience we've gained will be boxed up."