Too often, patients and providers equate palliative care with hospice, considering it only when someone has a terminal illness and there’s no hope for curative treatment. But palliative services can be used in a variety of ways, including to help patients understand their conditions, sort through treatment options, and find relief from pain and other distressing symptoms. While hospital programs are the most common, community-based palliative care programs — that is, those outside of hospital settings — offer support to patients coping with serious and often progressive medical conditions and serve as a complement to primary and specialty care.
During the pandemic, palliative care has proven to be an essential part of our health care system’s response. Palliative care providers have enabled sick and frail people to shelter safely at home and have stepped in to support COVID-19–positive patients and their clinicians in ICUs. And at a time when more than 30 percent of the most gravely ill COVID-19 patients weren’t surviving, palliative care providers have comforted the dying and helped patients and their family members say goodbye.
We look at the evolving role of palliative care during the pandemic, elicit lessons for policymakers and practitioners that are emerging from this crisis, and consider what it would take to sustain and spread palliative care programs to benefit more people.
Palliative Care Providers Respond to a Surge
This spring, as New York City’s Mount Sinai health system coped with a surge of COVID-19 patients, a team of palliative care providers at the health system’s Icahn School of Medicine quickly launched a 24/7 telephone help line, known as PAlliaTive Care Help (PATCH-24). Initially, the team thought they could offer guidance to critical care clinicians on ways to explain treatment options and elicit patients’ goals, as well as on how to manage symptoms like shortness of breath. But it soon became clear that emergency department clinicians didn’t have time to conduct palliative consults, much less learn how to do so when faced with a new disease during a pandemic. “Normally, we would ask patients’ own physicians to call family members first to have the conversation. If it doesn’t go well, then they can call us for help,” says Nathan Goldstein, M.D., a Mount Sinai geriatrician and palliative medicine physician. “But they literally didn’t have time to take off their PPE and make a call.” Instead, the PATCH team began calling patients and their families directly, handling 873 cases in four weeks.
Tools for Providing Palliative Care During the Pandemic
Talking about palliative services can be a challenge for health care professionals, particularly when they may not have sufficient time or good answers. Advocacy and research groups have created tools to help health care professionals broach difficult subjects related to the pandemic and offer their patients information and support.
The COVID Ready Communication Playbook, created by Vitaltalk, offers guidance to health care professionals on how to talk with patients and family members about COVID-19.
The COVID Conversation Toolbox, created by the Coalition for Compassionate Care of California, includes resources and educational materials for health care providers and consumers.
To meet this high demand, the PATCH team enlisted medical students to triage calls and palliative care professionals from across the country to help staff the hotline as volunteers. The volunteers relied on scripts that had been created to address the uncertainties of a new disease and the stress of being unable to visit hospitalized patients. In addition to helping family members understand their loved ones’ status and treatment options, they arranged video visits, dispatched chaplaincy and art therapy services, and offered mindfulness coaching and other supports. “We expected a lot of distraught, angry family members,” says Diane Meier, M.D., director of the Center to Advance Palliative Care, who helped to launch the hotline. “All we got was gratitude because somebody was talking to them about their loved one. It shouldn’t be special to get regular communication like this; it should be the standard practice.”
Another unique facet of Mount Sinai’s approach to palliative care is its use of community health workers (CHWs). Before the pandemic, Goldstein had been conducting a randomized control trial of a community-based palliative care program in which CHWs provided basic health education to patients with serious illnesses and their caregivers and helped them think through treatment goals. The goal was to expand access to these services and more closely engage patients in their care. Nurses and social workers also made home visits, supported by a nurse practitioner and a physician.
During the surge of COVID-19 cases in New York, the trial was put on hold and the palliative care teams pivoted to help people who were falling into what Goldstein recognized as a “newly emerging gap in care”: people who were seriously ill with COVID-19 but wanted to stay home and focus on comfort measures instead of going to the hospital, where they would be isolated from friends and family. They also wanted to support patients who were having difficulty enrolling in hospice services, which were overwhelmed and couldn’t always enroll patients quickly enough. Teams of CHWs, nurses, and social workers offered support to nearly 40 patients in three weeks, mostly via video visits and calls. They arranged to have oxygen and medications sent to people’s homes, typically within two hours, and delivered personal protective equipment (PPE) to family members so they could care for relatives. “In this time of great uncertainty, people who knew what they wanted were referred to our program,” says Goldstein.
Like Mount Sinai, MedStar Health system, which provides close to 5 million outpatient visits per year across the Washington, D.C., and Baltimore area, has relied on telehealth and nonspecialists to expand palliative care capacity and keep patients safe. Before the pandemic, MedStar Health’s palliative care providers had already been holding virtual visits with seriously ill patients in the community; they’ve continued to do so in recent months, helping manage patients’ anxiety and other symptoms and stay away from hospitals. Palliative care providers have also offered video consults to COVID-19 patients in hospitals; doing so has helped preserve PPE, keep people safe, and enabled palliative care providers in inpatient and outpatient settings to cover for one another.
Starting in April, the health system launched a new screening approach to identify all hospitalized patients who may benefit from palliative care consults; the system flags patients who are COVID-19–positive, have symptoms such as shortness of breath, have difficulties performing basic activities, or have had frequent hospitalizations. “We make clear that palliative doesn’t mean hospice,” says Meena Seshamani, M.D., Ph.D., MedStar Health’s vice president for clinical care transformation. “We ask, ‘Are we keeping you comfortable? Do you feel like your values and desires are being met?’ This approach should go alongside curative treatment because it promotes healing.”
To help patients identified as needing consults, MedStar Health trained physical and occupational therapists — who had slack in their schedules because they weren’t helping patients after elective surgeries — to serve as advance care planning facilitators in Respecting Choices, an evidence-based approach to health care decision-making. The therapists then had conversations with patients and their families about their decision-making preferences, via video. “Using the therapists and video-enabled telehealth has enabled us to increase capacity while preserving PPE,” says Seshamani. “And because people don’t have to wear masks, you can actually see the whole person when talking about making health care decisions.”
Modeling Palliative Care Consults in the ICU
Dana Lustbader, M.D., is chair of the department of palliative care at ProHEALTH, a multispecialty accountable care organization serving 1.2 million patients in the New York metropolitan area that is part of Optum. During the pandemic,Lustbader has been wearing two hats: one as a critical care physician volunteering to treat COVID-19 patients in the hard-hit Long Island Jewish Forest Hills hospital in Queens — the borough that has seen the most cases — and another as a palliative care physician offering services to patients while modeling how to do so for other clinicians.
“At the end of every round in the ICUs, we would do palliative care rounds. We would hold family meetings for each and every patient. So many doctors I was with, and trainees and medical students in these units, were not critical care folks. They were repurposed pediatricians or surgeons or dermatologists or others who came to volunteer. I would put the calls on speaker andwe would all have the meeting with the family, and their skills would be raised because they would get to see how a good palliative care family meeting can be done.
This means talking with families about the risks and benefits of each decision. We know, for instance, that a good percentage of people who are on ventilators with COVID-19 will develop kidney failure. Do we put these patients on dialysis? What is the likelihood that it is going to bring this patient back to a life that they would value if they were bedbound with advanced dementia? And making sure we help families understand that a do-not-resuscitate order for somebody who’s failing all therapies, who’s already on a ventilator, simply means that when their heart stops, we’re not going to do CPR because it won’t work. Regardless of what patients’ prior wishes were, they may not be applicable to this situation, so we have to have these conversations before each and every procedure.”
Community Programs Support Patients During Pandemic
Sharp HealthCare’s community-based palliative care program in San Diego, known as Transitions, is offered to patients whose physicians recognize in them the early signs of decline, such as rapid weight loss or inability to walk without assistance. Implemented in 2007, the program was initially designed to help patients with advanced chronic illness, such as heart failure, avoid hospitalizations as their condition deteriorates. Many of the patients in the program are covered by Medicare Advantage contracts, for which Sharp assumes financial risk; services for patients covered by fee-for-service insurance contracts are paid for through grants.
“To identify appropriate patients, we ask physicians in our medical groups the question, ‘Do you think this patient, as a consequence of their illness, is likely to use the hospital as a tool to manage their condition?’” says Daniel Hoefer, M.D., chief medical officer of outpatient palliative care at Sharp. If the answer is yes, patients and their caregivers are offered support from teams of physicians, nurses, and pharmacists. The team works alongside the patient’s primary care or specialist physician to offer education about warning signs of decompensation and provide tools to stem problems, such as emergency stashes of steroids for those experiencing COPD exacerbations. The program’s spiritual care providers and social workers offer links to community resources and emotional support.
In recent months, Sharp’s palliative care teams have continued to visit patients, relying on PPE and other precautions, often cautioning patients about the risks that dementia may be exacerbated or accelerated by a hospital stay. Hoefer says most elderly people aren’t aware that anesthesia, surgeries, and the experience of hospitalization itself can lead to permanent functional decline, cause delirium, or worsen symptoms of dementia. Many elderly patients would choose to preserve their cognition over their physical functioning if given the choice, he says.
At the same time, the palliative care teams have seen the tolls that social isolation is taking on the elderly during the pandemic and have been working to help patients take part in family meetings, religious services, and other opportunities for human contact via video.
Lessons for Policy and Practice
Palliative care clinicians at Mount Sinai, MedStar Health, Sharp, and other institutions have offered rapid and creative responses to meet demand for palliative care during the pandemic — helping patients, family members, and clinicians grappling with COVID-19 navigate the unknowns and fears of a new disease while keeping others safe in their homes. Their experiences offer lessons for how to sustain and scale their work during the pandemic and beyond.
Use of telehealth and nonspecialists can expand palliative care capacity.
The sudden shift to telehealth during the pandemic has enabled some palliative care programs to expand their reach. MedStar Health’s use of virtual visits yielded a 21 percent increase in palliative care consults across its 10 hospitals from the first to the second quarter of this calendar year. Lehigh Valley Health Network, which operates a community-based palliative care program serving some 700 patients across eastern Pennsylvania, switched to only virtual visits for five weeks this spring and thereby increased patient volume by 40 percent. It now provides both virtual and in-person visits, which together have led to productivity gains of 25 percent.
Palliative care providers say that video and teleconferencing platforms have enabled them to do things they weren’t otherwise able to do, such as include distant family members in meetings and bring in translators on demand. But program leaders also note there are limits to the approach and say a mix of in-person and virtual visits is needed.
During the pandemic, palliative care programs have also enlisted nonspecialists, including medical students and residents in fields other than internal medicine, to expand their capacity. This may be a model that others will begin to adopt, given that a lack of trained palliative care professionals has been one of the biggest impediments to expanding access to these services. Mount Sinai’s Goldstein says his trial has shown that community health workers, in particular, are well suited to the work: “We found patients formed really close connections with them,” he says.
Sharp’s Transitions Program Associated with Lower Costs
In an age-matched cohort evaluation, Sharp found that total health care costs for patients with cancer, chronic obstructive pulmonary disease (COPD), heart failure, and dementia were substantially lower among patients who received concurrent palliative care. By condition, the net savings per patient per month were:
Heart failure: $3,447
Palliative care can help people avoid hospitalizations, reducing risks and costs.
While still rare, palliative care services delivered outside of hospitals are becoming more common, and the pandemic may fuel greater interest in them. Some community-based programs targeting people with serious illness or multiple chronic conditions, like those run by CareMore and Sutter Health, offer a range of wraparound services, including chronic care management, symptom management, and social supports. Other programs deliver home-based primary care as well as palliative supports to people who have functional limitations and can’t easily attend office visits.
In addition to bringing comfort to patients and delivering care that accords with their wishes, community-based palliative care can substantially reduce costs. A randomized control trial found that patients enrolled in Sharp’s Transitions program had much lower hospital use than patients with the same health conditions (cancer, COPD, heart failure, and dementia) who were not enrolled.
Another community-based pilot, run by ProHEALTH, a multispecialty accountable care organization in the greater New York City area, was associated with $12,000 in savings per patient in the last three months of life, driven in part by fewer hospital admissions.
Smart use of data can enable providers to tailor their responses.
This spring, ProHEALTH’s palliative care providers went from having just a few virtual visits a day to having more than 3,000. According to Dana Lustbader, M.D., chair of the department of palliative care, she and her colleagues learned a great deal about what works via telehealth and what does not. Moving forward, she hopes to leverage these experiences, along with predictive modeling, to customize the type and frequency of responses in order to better meet patients’ needs.
“The one-size-fits-all model fails the seriously ill,” says Lustbader, noting that a well-designed risk prediction system could take into account not just patients’ medical conditions but whether they live alone or in neighborhoods that lack access to transportation or healthy food, for example, as well as patients’ own reports and feeds from remote monitoring tools. “We might be able to track patients who are starting to decline…and reach out to them proactively,” she says.
Clearer financial incentives are needed to promote greater use of palliative care.
While palliative care programs run by Sharp, ProHEALTH, and several others have been shown to reduce spending and improve patients’ quality of life, they can be difficult to finance. Sharp has been able to justify the expense of its Transitions program because it assumes financial risk for Medicare Advantage beneficiaries and recoups some of the savings it produces, as does ProHEALTH. Health systems that are largely dependent on fee-for-service reimbursement have less incentive to invest in palliative care. Indeed, Diane Meier of the Center to Advance Palliative Care worries that the financial crises many health systems are facing after cancelling elective procedures this spring may put palliative care programs on the chopping block. “Because we don’t bring in the big bucks, we are not prioritized,” she says. Already there is more limited access to palliative services in parts of the country such as the South, and in for-profit health systems.
One remedy would be having insurers reimburse directly for community-based palliative care services, a practice emerging in California after the state in 2018 required MediCal plans to make palliative care a defined benefit for Medicaid beneficiaries with specific advanced illnesses. Those who qualify are eligible to receive help with advance care planning and ongoing support from an interdisciplinary team that addresses a patient’s medical, psychosocial, and spiritual needs, among other services.
Before 2018, Blue Shield of California had already been testing the idea of paying community-based palliative care providers a monthly case rate to offer care from an interdisciplinary team that would be available to patients at any time. It has since expanded a pilot of the program, created at the behest of an employer, and has delivered the service to some 2,600 patients in 44 counties who are covered by its commercial or Medicare Advantage plans. Blue Shield places no time limits on the service, but limits eligibility according to patients’ prognoses.
The Centers for Medicare and Medicaid Services’ Primary Care First Payment Model, which will reward primary care practices for improving care for patients with complex, chronic needs and those who are seriously ill, could motivate participating practices to invest in palliative care. ProHEALTH plans to offer palliative care to patients in several New Jersey practices taking part in the Primary Care First program. “We want to see if that reimbursement strategy can be viable because without such supports, there’s simply no incentive for health systems to be accountable and available to patients 24/7,” Lustbader says.
Before the pandemic, palliative care was the fastest-growing medical specialty in the U.S., with interest driven by our aging and chronically ill population and the spread of value-based care. It remains to be seen whether the financial and service disruptions brought by the coronavirus will accelerate or hinder this trend. But the need remains urgent, says Amy Berman, R.N., a senior program officer at The John A. Hartford Foundation and someone who has experienced the benefits of palliative care as she’s battled stage IV breast cancer for 10 years.
“When you think about the 2.5 million people who die in this country per year, many of them have a known serious illness and many more live with chronic disease and would benefit from palliative care,” Berman says. “It really helps people live the best possible life in the worst possible situation.”
Martha Hostetter, Consulting Writer and Editor, Pear Tree Communications