When the COVID-19 pandemic first hit Boston, Massachusetts General Hospital made the decision to embed palliative care specialists in the emergency department. Every weekday from 9 a.m. to 7 p.m. a palliative care doctor worked alongside intensivists evaluating patients, addressing their symptoms, answering their questions and having conversations with them about what was important to them in their medical care.
Palliative care is a medical subspecialty that focuses on providing relief from pain, stress and other symptoms for seriously ill patients. A patient with a serious illness can be referred to palliative care at any point in the disease trajectory, including at the time of diagnosis. Palliative care providers include doctors, nurses and other specialists who work with a patient’s primary care doctor or specialist to provide an extra layer of support for the patient. They often work with patients who have cancer, chronic obstructive pulmonary disease, Alzheimer’s disease, Parkinson’s disease, or any serious illness that might limit a patient’s lifespan and hinder quality of life. In a palliative care visit, the clinician will ask patients and their families in-depth questions about the patient’s symptoms and any side effects of treatment, review their medications and help them cope with the general stress of having a serious illness.
While palliative care specialists don’t typically work in emergency rooms, doing so in the age of COVID-19 seems like a natural fit, according to Diane Meier, director of the Center to Advance Palliative Care, based at the Icahn School of Medicine at Mount Sinai Hospital in New York. “They were providing symptom relief for shortness of breath, agitation, anxiety, delirium and confusion,” says Meier. “Importantly, they were providing skilled communication between patients, clinicians and family members that the front line clinicians did not have time to pursue because the volume of demands on them were so high.”
“Goals of care” conversations
In the first wave of the pandemic, many of the patients being hospitalized with COVID-19 were elderly and had multiple underlying medical conditions. They had become suddenly ill, were having difficulty breathing and needed someone to talk to them about what interventions they would want if they became sicker. These are called “goals of care” conversations. In them, palliative care professionals talk to patients and family members about the medical realities of the situation and which aggressive measures, such as intubation or CPR, would be effective. These conversations give patients and their families a voice, and they support medical staff who may suffer moral anguish when they have to make these decisions without this input.
While many doctors and nurses know how to ask these questions, palliative care clinicians have had intensive training in how to conduct them with compassion and how to advocate for patients.
“I had to work at the top of my skillset,” says Dr. Vicki Jackson, chief of the Division of Palliative Care and Geriatric Medicine at Mass General, who has worked 10-hour shifts in the emergency department during the COVID-19 crisis. “You’ve got five minutes to do a chart biopsy and you have to go in with someone who is critically ill. Then you call the oncologist if they are a cancer patient, or the primary care doctor, and then the family. And take all of that and make a recommendation with the team about how we should proceed.”
According to Jackson, some patients were adamant that they did not want extreme measures such as a ventilator. Other cases were more nuanced. One such case was written up for the New England Journal of Medicine in June.
Jackson and colleagues describe a 74-year-old man who came in with possible COVID-19. He had advanced cancer with a prognosis of less than a year. He’d had recent surgery for a heart valve issue and numerous other serious health conditions. He agreed with the palliative care clinician that being intubated was probably not going to be effective if he had COVID, but he wanted to try everything to get better.
He indicated that he wanted to be taken off the ventilator if he wasn’t getting better. He was intubated and then tested negative for COVID, but positive for influenza A. Unfortunately, his lung function worsened and his kidneys failed. At that point, his wife talked to the ICU staff and made the decision to remove the ventilator. He was given comfort care, which is medication to reduce pain and other symptoms, and died shortly afterward. In the article, his wife is quoted as saying that the goals of care conversation gave her the clarity she needed to act on his wishes.
A shortage of palliative care clinicians
Palliative care clinicians were in short supply even before the pandemic. Palliative care was formally recognized as a medical subspecialty in 2008 by the American Board of Medical Specialties. Doctors need to undergo a 12-month fellowship and take an exam to become certified. The American Academy of Hospice and Palliative Medicine reports that there are 7,618 board certified palliative care physicians in the U.S., of which 6,999 are active. (Compare this with 12,940 practicing oncologists).There are more than 18,000 palliative care-certified nurses. According to a 2018 article in the Journal of Pain and Symptom Management, there is a critical need to increase the training pipeline to meet the growing demand for trained palliative care professionals.
This shortage affected the ability of some hospitals to get palliative care clinicians during the pandemic. New York City Health + Hospitals, the largest public hospital system in the U.S., was especially hard hit during the first wave of the pandemic. This is a safety net hospital system, meaning that their mission is to provide healthcare to patients regardless of their ability to pay, and their patients were the ones hardest hit by the virus. The hospital system administration put out a call in the spring for clinicians to come to the city and work in emergency rooms, but few palliative care clinicians responded, according to Harry Cho, the chief value officer at NYC H+H whose team was in charge of finding these external staff members. He says he realized quickly that they needed extra support for patients. “When the pace picks up so quickly and you’re worried about PPE and ventilators, it’s easy to lose that communication with patients and families,” he says, “Everyone knows that you need to have goals of care conversations, but that takes time. It takes experience and dedicated training to do it well.”
Cho’s solution was to crowdsource the problem. As he describes in an April article in The Hospitalist, he put out a call for remote volunteers across the country who would offer consultations via Facetime, WhatsApp, or telephone. In three days, they had 413 volunteers in three time zones. These volunteers were palliative care specialists, including doctors, nurses, social workers, medical students, and chaplains who were rapidly credentialed to practice in New York state. They could call their liaison in the hospital who would connect them to a doctor, the patient’s room and the phone number of a family member.
Cho acknowledges that this is not the ideal way to deliver palliative care, as it adds so many extra steps. “If you are both in the same room, you just look to your left and give the information about the patient and the other person can go call the family and come back and talk about it,” he says. “The information is flowing both ways. But with remote volunteers doing telehealth calls, you have to coordinate through the hospital liaison, then they call the volunteer, then the volunteer calls the patient or family.”
Still, “I think the teams really did appreciate it,” he says. “Even if a volunteer was able to do just one extra consult per day, it was a huge help.”
For journalists who may be covering the topic, we curated and summarized several studies relevant to palliative care during COVID-19.
The Experience of Emergency Department Providers with Embedded Palliative Care During COVID
Emily L Aaronson, Laura Petrillo, Mark Stoltenberg, Juliet Jacobsen, Erica Wilson, Jason Bowman, Kei Ouchi, Lara Traeger, Bethany-Rose Daubman, Christine S Ritchie, Vicki Jackson.
Journal of Pain and Symptom Management, Aug. 30, 2020
This paper looks at the results of an e-mail survey sent to emergency department doctors at Massachusetts General Hospital after the first wave of COVID-19 patients. The survey was conducted after palliative care clinicians were embedded in the emergency department to help deal with that first surge of patients in March and April. For eight weeks, palliative care physicians took turns staffing the hospital emergency department in 10-hour shifts. They met with patients as they were admitted, addressed their symptoms and anxiety, initiated goals of care conversations and closed the communication gap between patients, families, primary care physicians, and emergency department clinicians.
The survey had a healthy response, with 101 out of 134 clinicians responding (75%). Of those who had interacted with palliative care during this pilot program, 98% identified it as valuable or very valuable. Most indicated that palliative care practitioners freed them up to do other tasks, but also noted that they felt more supported in their work. A few noted that it was sometimes difficult to locate the palliative care clinician or that it was difficult to engage palliative care when patients were crashing. Respondents were unanimous in wanting palliative care to be ongoing in the emergency department. In open-ended questions, one respondent wrote, “please never let them leave.” Another respondent wrote, “[There were] times when I disagreed with the family, but palliative care was instrumental in advocating for them and listening in longer conversations that I would not have had time for, and they make me feel more confident that the clinical decisions are in line with the patients and families’ goals of care.”
Working Upstream in Advance Care Planning in Pandemic Palliative Care
Milana Zaurova, Mona Krouss, Sigal Israilov, Louis Hart III, Hilary Jalon, Georgia Conley, Khoi Luong, Eric K. Wei, Robert Smeltz, Michael Frankenthaler, Jeffrey Nichols, Susan Cohen, Natasha Suleman, Marina Ivanyuk, Pavel Shulman, Osbely Tala, Lauren Parker, Tita Castor, Nicole Pearlstein, Elizabeth Kavanagh, and Hung J. Cho Health Security, Oct. 12, 2020
This commentary details the experience at New York City Health + Hospitals during the first wave of COVID-19 when administrators realized they had an acute shortage of palliative care professionals. As a public hospital system, NYC H+H was serving the city’s most vulnerable population, including those insured through Medicaid, and those who lack insurance. At the peak of the surge, on April 8, their emergency rooms were filled at 3 to 5 times the normal capacity. Emergency department clinicians realized they had no time to talk to patients and families about goals of care. NYC H+H put out an urgent call through their own social media channels for volunteers who were palliative care professionals or others skilled in conducting goals of care conversations and would be willing to do so remotely, via telemedicine. Within hours, 413 volunteers had responded from three different time zones. These volunteers were offered rapid, temporary credentials to give them access to electronic patient charts. In the system they were known as “telepalliative” medicine volunteers. They conducted 109 consultations in the first 14 days. The report doesn’t say how many total consultations were performed, only that the program was ongoing.
These remote volunteers used their own smartphones and apps to contact patients and families and connect with emergency department clinicians who could provide context for what was happening with the patient. The hospital system acquired 1,300 tablets to be used by those patients who lacked a device to use. The volunteers reported surprise at how warmly they were greeted by family members when they called, even when the information they provided was inconclusive or bleak. One volunteer noted that families would often inquire about the volunteer’s wellbeing, and send good wishes to the hospital workers during the call. The report also states that, “Remote volunteers were quite struck to discover that many patients had already lost multiple family members to COVID-19 and, in some cases, were the sole survivor in their household.”
The report says that as NYC H+H prepares for the next wave, clinicians are working proactively to initiate goals of care conversations with their most vulnerable patients.
REMAP: A Frame for Goals of Goals of Care Conversations
Julie W. Childers, Anthony L. Black, James A. Tulsky, Robert M. Arnold Journal of Oncology Practice, April, 2017
This influential article outlines a framework for oncologists about how to conduct goals of care conversations. The researchers note that oncologists sometimes avoid these conversations because they fear they lack the training to conduct them effectively, and because it’s hard for even experienced doctors to handle the strong emotions that patients have when learning that their cancer is advancing, or that chemotherapy is no longer effective. REMAP in this case is an acronym that stands for Reframe the medical situation, Expect emotion, Map out the patient’s values, Align with the patient’s values, Propose a plan.
This is a palliative care framework. The oncologist asks patients what they understand about how they are reacting to treatment, and asks if more information about the big picture would be helpful. Then the oncologist can offer that information and offer empathy for the patient. Then the oncologists asks open-ended questions about what’s important in terms of quality of life and what values should guide medical decision making. Some patients want more treatment even if it’s not effective, but others don’t. Based on this discussion, the oncologist makes a plan with the patient.
Early Palliative Care for Patients with Metastatic Non-Small Cell Lung Cancer
Jennifer JS. Temel, Joseph A. Greer, Alona Muzikansky, Emily R. Gallagher, Sonal Admane, Vicki A. Jackson, Constance M. Dahlin, Craig D. Blinderman, Juliet Jacobsen, William F. Pirl, J. Andrew Billings, and Thomas J. Lynch. New England Journal of Medicine, August, 2010
It’s important to understand how palliative care functions outside of a pandemic. This is a foundational study on palliative care in the cancer setting. The study enrolled 151 patients with a serious lung cancer diagnosis. Patients were randomly assigned to a study group or a control group. Of those 151 patients initially randomized, 27 had died by 12 weeks. Just 107 (86% of the remaining patients) completed assessments. The study group had standard oncologic care in addition to outpatient palliative care starting at the time of diagnosis. The control group had standard oncologic care alone. At the time of the study, patients with this type of cancer typically had a prognosis of about one year. At the time this study was conducted, cancer patients were typically referred to palliative care late in their illness or when their symptoms, such as pain, were difficult to control. The patients were followed at each monthly visit and assessed for quality of life, patient outcomes and the use of health services over time.
The study found that the patients who had palliative care in addition to standard cancer care had significant improvements in both quality of life and mood. Approximately half as many patients in the palliative care group had significant depressive symptoms, even though there was no significant difference between the groups in antidepressant use. These patients also had less aggressive care at the end of life and yet they survived approximately 2 months longer than those on standard care alone.
Oncologist Factors That Influence Referrals to Subspecialty Palliative Care Clinics
Yael Schenker, Megan Crowley-Matoka, Daniel Dohan, Michael W. Rabow, Cardinale B. Smith, Douglas B. White.
Journal of Oncology Practice, March 1, 2014
Oncologists at cancer centers in Pittsburgh, San Francisco, and New York City were interviewed at length about their tendencies to refer patients to palliative care. All three cancer centers had palliative care clinics, so there was ample opportunity for the oncologists to make these referrals. A significant number of oncologists—22 out of the 74 interviewed—stated that they thought that palliative care was not appropriate for patients who were still receiving chemotherapy. Others said that they understood the role of palliative care in cancer care, but were hesitant about sharing responsibility for symptom management with another doctor. Some hesitated because they thought that sharing symptom management meant that they were shirking their own responsibilities. A few reported that they didn’t know much about palliative care. The researchers noted that the doctors with little or no knowledge of palliative care tended to have been in practice for a long time. While some of the oncologists said that they routinely referred patients to palliative care and had good experiences, this was not true of the majority of those interviewed.
This type of study shows that even inside the medical community, there are doctors who don’t understand the modern role of palliative care in outpatient cancer care.
Effect of a Home-Based Palliative Care Program on Healthcare Use and Costs
Brian Cassel, Kathleen M. Kerr, Donna K. McClish, Nevena Skoro, Suzanne Johnson, Carol Wanke, and Daniel Hoefer
Journal of American Geriatric Society, Nov. 2016.
This is a retrospective, observational study to see if a home-based palliative care program reduced the healthcare costs for people with serious illness in the final months of life. It looked at the charts of 368 patients in Southern California who had enrolled in a palliative care program alongside their regular care for serious illness between 2007 and 2014. These patients were living with one of four serious illnesses: cancer, chronic obstructive pulmonary disease, heart failure or dementia. All of the patients in the study had died at the time of the data analysis. Researchers then selected a control group of patients with matching demographics who had not enrolled in palliative care.
This home-based program had two phases of care: acute and maintenance. In the acute phase, patients would receive 4 to 6 home visits from a palliative care nurse, and additional visits from a social worker, plus visits from a spiritual care providers if requested. These clinicians would manage the patient’s symptoms, initiate conversations about goals of care, and talk about the likely trajectory of the illness. Once the patients were stable, the program would switch to a maintenance phase with fewer home visits, and more check-ins by phone.
The palliative care program, called Transitions, was created by the Sharp HealthCare, a nonprofit hospital system in San Diego. Researchers note that the cost of staffing the program was $4,585 per patient in 2014 dollars. The patients were enrolled for an average of 7 months. They estimate that the program cost the hospital $642 per patient each month. Yet, its participants had fewer hospital stays and lowered hospital related costs compared with those not engaged with palliative care. In the final months of life, the cost disparity became more dramatic. Those in home based palliative care for dementia had hospital related costs of about $885 per month, while those on standard care alone incurred costs of $3,575 per month. This disparity became more dramatic in the final month of life. Mean costs for those in palliative care was $3,711, while those on standard care incurred $17,006 in hospital costs in their final month of life.
Although the study wasn’t set up to measure the patient experience of palliative care, the researchers included information from patient surveys. They indicate that more than 80% of patients indicated that the program helped them learn to manage their medications and symptoms, that the clinicians were available and helpful and that they felt that the palliative care program had reduced their need for hospitalization.
The Costs of Waiting: Implications of the timing of palliative care consultation among a cohort of decedents at a comprehensive cancer center.
Colin Scibetta, MD, Kathleen Kerr, BA, Joseph Mcguire, MD, and Michael W. Rabow, MD
Journal of Palliative Medicine. Jan. 2016.
This is another retrospective study, looking at the medical records of 922 patients who had died of cancer after receiving care at the UCSF Helen Diller Family Comprehensive Cancer Center. It compares two groups, those who received palliative care before the final three months of life and those who didn’t meet with a palliative care specialist until the final three months of life. Many of the early patients had early palliative care for six months or more. Researchers gathered data on all inpatient and outpatient encounters within the entire medical system to see whether early palliative care, even if it occurred later in the disease trajectory, would help patients reduce hospitalizations and affect the direct costs of their care.
The results showed that those with late palliative care were twice as likely to be hospitalized during the final month of life, and four times as likely to spend time in the ICU in that same time period. They were also far more likely to have multiple visits to the emergency room in the final 30 days of life compared to those with early palliative care.
The researchers note that just 32% of all patients who died from cancer during the study period had had any contact with palliative care (297). Of those, 35% had early palliative care (93), while the rest had late palliative care (204). Despite the fact that the American Society of Clinical Oncology guidelines recommend early palliative care involvement for patients with metastatic cancer, there are ongoing barriers for doctors to refer patients to this type of care.
For more on medical care during the COVID-19 pandemic, see our roundup of research on racial disparities in telemedicine. Also see these tips for journalists who are covering palliative care, featuring guidance from Meier and Jackson.