When Dr. Steve Pantilat asks his patients what they want most at the end of life, the answer is almost always the same: To be comfortable and surrounded by people they love.
“I’ve been in rooms where there are 35 family members, people are playing music and holding a vigil, saying prayers and singing,” said Pantilat, chief of palliative medicine at UCSF and author of Life After the Diagnosis. “They’re even having weddings in the hospital. Just last month, we had another wedding for someone who was dying.”
But in the age of coronavirus, none of this is happening. There’s too much risk of visitors getting sick or infecting critical frontline staff, and there’s not enough protective equipment to go around. So the new policy at UCSF and hospitals across the country is: One visitor, and only for patients who are actively dying.
“I think that’s really, really, really distressing for everyone involved,” Pantilat said. “We’ve never really faced this before, trying to make these really gut wrenching decisions about visitation of when and who and how many. It’s a very sacred time, and yet, for this pandemic, it’s really important to limit spread.”
Between 100,000 and 240,000 Americans are expected to die from COVID-19, according to the latest projections from the Trump administration’s pandemic scientists. Palliative care specialists, whose expertise is managing pain and disease symptoms as well as having difficult conversations about the end of life, are already feeling overstretched.
Dozens of hospitals in the Bay Area and beyond are racing to move their palliative care services online, using video visits and phone calls to keep patients connected with their families and their doctors. Apple donated 140 iPads to UCSF to use in their telemedicine program, and the Stupski Foundation gave $275,000 to Highland Hospital in Oakland to fast-track the building of their telemedicine program so it can be operational for the pandemic.
“Is a remote visit from a palliative care service as effective as an in-person visit where we’re sitting on the side of a bed and holding someone’s hand? I would say no,” said Jessica Zitter, a palliative care doctor at Highland and author of the book Extreme Measures.
But the technology will have to do. Her team is small, she said, and if one or two doctors get sick, the whole service would be wiped out.
“If we want to stay in the game here and offer our services as I think we’ll need to, I think we’re going to do better if we are working from a remote virtual platform,” she said.
Palliative care doctors have been fighting for permission to use telemedicine for years. Especially in rural areas, they’ve wanted the ease of video visits so patients who are ill and in pain don’t have to go to the trouble of coming in to a doctor’s office. But the federal government has refused to pay doctors for most video visits and insisted on various rules and restrictions, including making patients in rural areas drive to local clinics for a telemedicine appointment rather than doing it from their own home.
The coronavirus has forced some changes, and just two weeks ago, the feds abruptly shifted policy. At a White House press briefing on March 17, Seema Verma, administrator of the Centers for Medicare and Medicaid Services, said the agency was dropping the restrictions, as well as the fines doctors faced for using unapproved technology. She encouraged doctors to go digital.
“Doctors can provide telehealth with their own phones,” Verma said. “In an emergency, those on the frontlines shouldn’t have to worry about federal rules and red tape hamstringing them when they need flexibility above all else.”
Doctors can now get reimbursed for a video visit at the same rate as an in-person office visit, whether the patient or the doctor is at home.
“We’re in a system where the only way physicians’ practices keep the lights on is through what they’re able to bill,” said Chris Acevedo, who runs Acevedo Consulting, a health care billing firm in Delray Beach, Florida. “Without the changes that the government put in place, there would really be zero access to telehealth because the doctors wouldn’t have any remuneration for it.”
The policy changes will encourage the uptake of telemedicine, Acevedo said, and by extension, increase access to palliative care for patients. That includes people who are sick and dying from COVID-19, but also patients who are sick at home with other serious illnesses, some of whom are dying and some who will recover.
Rae Anne McLaughlin was one of those patients a few years ago. After she went through 12 rounds of chemotherapy and 35 radiation treatments to treat her stage four head and neck cancer, the last thing she wanted was to drive 70 miles from her home on Long Island to the hospital in the city. She had a palliative care team that would call her up and have normal conversations — not science jargon — about how she was feeling, what she could do about the tingling in her hands and feet and how to manage the opioids she was taking for pain. All of this was over the phone.
“It was fabulous,” McLaughlin recalled. “I didn’t have to shower if I didn’t feel like it. Imagine just feeling really, really crummy and then having to get in a car and drive an hour and a half. I didn’t want to do it.”
She had private insurance that covered the telephone calls. She’s fully recovered now, three years later, but she can still email her palliative care team. And she did recently to ask whether she was more at risk for becoming ill from coronavirus and to get advice about how to protect herself. They told her to stay home and get her exercise in her house and backyard.
Even before the coronavirus pandemic, palliative care specialists — including doctors, nurses and social workers — were in short supply. The subspecialty “didn’t get formal approval until 2007, and we didn’t start training palliative care specialists in any kind of serious numbers until recently,” said Dr. Diane Meier, director of the national Center to Advance Palliative Care and a gerontologist at Mount Sinai Health Systems in New York.
Meier knew they wouldn’t have enough palliative care specialists at her hospital to meet the demand of COVID-19 patients needing pain and symptom relief, especially shortness of breath. Her plan was to train frontline emergency department doctors and nurses how to do this themselves, but patients overwhelmed the hospital so fast, they didn’t have time.
“They’re getting a new patient in the door of the ED (emergency department) every 30 seconds,” she said. “So we’re creating things like pocket cards and 24/7 hotline numbers that a clinician can call at any hour of the day or night to get very specific advice: ‘What dose do I use? What do I do if it doesn’t work? How long do I wait before I give more?’”
But delivering bad news and having tough conversations is a skill they can’t easily delegate. And because COVID-19 can progress so quickly — with patients going from okay to barely able to breathe in an hour — there’s so little time to talk with patients about what kind of care they’re willing to have, what’s important to them and what they want for the end of their lives.
UCSF’s Pantilat says everyone should be having these conversations with their loved ones now. Some older people who have had a few tours of the medical system already may not want to be intubated and sedated on a ventilator, he said. They may not want to be in the hospital at all, especially if it means they will be separated from their families.
But younger people are dying, too, he added, and should think about where they stand on advanced directives for medical care and do-not-resuscitate orders. They should be thinking about how to say goodbye.
“Some of us who might not have thought about these issues and thought, ‘Oh, I’ve got a lot of time before I have to worry about this,’ are suddenly facing the reality that you could get suddenly sick and suddenly very, very sick,” he said. “No harm in saying, I love you and thank you and forgive me and I forgive you to the people you care about at any time. It’s a really good time to do that now.”