The Unseen Effects of the Pandemic on Hospice Physicians
For Bethany Snider, MD HMDC FAAHPM, senior vice president and chief medical officer of Hosparus Health, a large not-for-profit hospice and palliative care provider based in Louisville, KY, the emergence of the COVID-19 pandemic in March 2020, changed her job almost overnight.
What used to be a major emphasis on strategy, innovation, and new program development shifted to reading everything she could about the virus—practically a full-time job in itself considering the constantly changing information. "I had to develop policies to support our staff. I had to know what the latest evidence said so I could communicate that to staff. Never did I imagine how quickly things would change, or that I would need to become an infectious disease expert driving policies and procedures for my organization of 700 employees," Snider, a member of AAHPM's Hospice Medicine Council leadership team, said.
"But our organizations looked to us to do that, with the chief medical officer as the point person for all of the questions and all of the controversies. I was waking up at 2 am many nights, wondering if we were making the right decisions. The job got harder every day, and some of the grief for me, personally, was no longer doing the job I used to enjoy." Other changes included a major pivot to telehealth for both team meetings and patient encounters.
For hospices nationwide, and for their physicians, the impact of COVID has not yet been quantified, and data on how hospice admissions and caseloads fared during the pandemic remain to be seen. Anecdotally, some hospices reported significant drops in referrals, particularly early on, when access to nursing homes and their residents were halted by quarantine policies.
Some patients and families were reluctant to accept hospice personnel into their homes for fear of exposure. Others, having given up their customary visits to physicians or hospitals because of COVID, no longer had access to the usual pathways for hospice referrals. But other hospices reported that referrals went up—in some cases beyond their ability to hire enough staff to care for the new patients. For some patients who had not been receiving routine or preventive care, hospice might have seemed like their only alternative.
What about hospice enrollment of patients with COVID—either as primary hospice terminal diagnosis or a comorbidity? Again, the data haven't caught up with realities from the front lines. Many of those with advanced COVID and respiratory distress who were in intensive care units or on mechanical ventilators could not easily transition into hospice care—or their condition worsened so quickly that there wasn't time to place a referral. But patients with COVID did make it to hospice.
Those referred with terminal COVID often have very short hospice stays, typically less than a week before death. And for those who live longer, there are no clear guidelines for continued COVID hospice eligibility—or when they should be discharged from hospice care. Patients who have other primary diagnoses such as cancer but a COVID comorbidity might have more typical lengths of stay.
In many ways, hospice clinicians say, managing COVID patients has required only the usual excellent symptom management of hospice care, with a greater emphasis on controlling pulmonary symptoms. But a handful of treatments specific to COVID, such as the broad-spectrum antiviral remdesivir or infusions of monoclonal antibodies, have demanded new responses.
Some hospices felt that they lacked the resources—whether that means personal protective equipment (PPE), rapid testing, medical supplies, or willing staff—to take on COVID patients, although a COVID diagnosis may not always be known at the time of an admission decision. And most of the limitations imposed by the pandemic, such as the need to don and doff personal protective equipment and no-visitor policies for patients in facilities, remained in effect whether the patient had COVID or not.
Meanwhile, finding adequate staffing to take care of them has been a huge challenge for many hospices, with the pandemic compounding existing workforce shortages. Whether because of people deciding to leave the field, increased rates of burnout and compassion fatigue, quarantines for those exposed to or infected by the virus, or just feeling done with this work after wrestling with the pandemic amid widespread disinformation and social conflict, these losses have left many hospices struggling to fill essential positions.
Hanging by a Thread
For Hosparus, with a customary census of about 1,250 hospice patients and 600 palliative care patients, COVID has represented about 5% of the total hospice caseload—or 50 to 60 patients at a time. Overall hospice census is up compared to early 2020, Snider said: "We've been seeing sicker people at higher volumes."
Experienced hospice medical director Ruth Thomson, DO, explained that both increases and decreases have happened in the market—depending on the organization's location—and that staffing issues are equally prominent. "It can be very dependent on local markets. From what I've seen, the staff shortages are getting worse, even more so since the pandemic. Some professionals were hanging by a thread, emotionally, and then along came the pandemic to make their situation even more tenuous," she said.
Seriously ill patients who haven't sought medical care for a year because of COVID can be a lot sicker upon their first presentation to the doctor and might then have a shorter stay in hospice, said Thomson, who also serves as treasurer of the AAHPM Board of Directors. The government's eligibility criteria for hospice care haven't changed, although they showed flexibility during the pandemic. "But it can be harder for hospices to make a decision about eligibility, with less clinical data such as performance status, weight, or other ongoing assessments to draw upon," she said. "It also seems, anecdotally, that [hospices] are getting more referrals than they used to from outpatient medical offices—and from patients and families themselves."
Ronald Crossno, MD HMDC FAAFP FAAHPM, an AAHPM past president and chief medical officer and national medical director for Kindred at Home, a national in-home and hospice company, no longer has direct contact with patients, but does serve as an advocate and sounding board for the hospice physicians employed by Kindred and has taken a lot of questions from them.
"A handful of our doctors got fed up and retired during the pandemic. Some of our nurses were not willing to go out into the field during the pandemic and chose to retire. I have to say I'm getting to an age where that thought has entered my mind," Crossno said. "But the challenge of COVID in some ways has reenergized me." And although some Kindred offices saw decreased staff census numbers, others saw big increases.
"We made a decision early on that we would care for COVID patients, including on our inpatient unit," said Edward Martin, MD MPH HMDC FACP FAAHPM, chief medical officer of HopeHealth, a hospice and palliative care organization based in Providence, RI. The eight-bed second floor of the hospice's 24-bed inpatient facility was dedicated to COVID patients and was full for many months, although the numbers have decreased recently, he said. However, the agency has seen larger numbers—dozens at a time—of COVID patients at home.
"We worked closely with our local health department. For our staff, there was a lot of anxiety at first, but within a couple of weeks, the anxiety lessened as they got into the routine," Martin said. Many of the patients came from hospital intensive care units, where it had become clear because of their comorbidities that they wouldn't recover.
"Some COVID patients, by the time they get to us, have no ability to reminisce," he said. "Maybe the most interaction their family got was a squeeze of the hand. We've also had patients come waiting to be weaned from the ventilator. We would take them here then remove the vent, and they would die within minutes or days."
Martin, a member of the leadership team for AAHPM's Hospice Medicine Council, adds that his own experience in providing hospice care in the COVID era has been largely positive, although he had some important losses—for example, he and his wife love to do ballroom dancing at a competitive level. "COVID wiped that out, but I tried to maintain other wellness activities," he said. And many other staff at HopeHealth have been remarkably resilient: "It seems like we can see the light at the end of the tunnel," he said.
"When it started, some of my younger colleagues offered to relieve me from responsibilities for seeing COVID patients because of my age. But I just felt as the chief medical officer that I had to remain involved. I staffed the COVID unit and took consults. My family was anxious about that at first, but I made it through the year," he said.
Martin credits the leadership of HopeHealth for keeping on top of the crisis. A COVID response team of senior administrators met remotely every day at the beginning of the pandemic. "We'd be on the phone for an hour at a time before gradually cutting back. We tried to make sure that we overcommunicated, telling staff here's what we're thinking and why we're doing things. 'Here's what we've learned.'"
What Is the Academy Doing to Help?
In recognition of how these issues have impacted hospices and clinicians all across the country, AAHPM has offered leadership programming to help members identify and refine their nonclinical leadership skills, which are increasingly needed to navigate the extra stresses in their practice.
"Hospice physicians have come to us with concerns about how to lead through a crisis of rapidly changing patient care needs and staffing shortages made worse by burnout and turnover. They say, 'My regular medical director role has gotten harder. I'm having to learn new things and develop new skills,'" said Joseph Rotella, MD MBA HMDC FAAHPM, chief medical officer of AAHPM.
"We learned in the early days of the pandemic that there was a great thirst to connect with others going through the same experience. It's lonely to be in a leadership position during a crisis. It can be isolating," he added. Managing change, evolving with a changing environment, making the right strategic choices in unprecedented circumstances—these issues all have challenged hospices to keep up.
AAHPM Ignite—which offers coursework and self-assessments to better equip hospice and palliative care team leadership with recognition of their strengths and limitations as leaders—is customarily offered as a live event at the Annual Assembly. It went virtual in 2021, with the most recent program offered October 12. Other resources include panel discussions on the dilemmas of COVID; virtual special interest group meetings; and AAHPM Connect, an online community discussion platform specifically for Academy members to network, share ideas, and ask questions of peers. The Academy also compiled a wide variety of resources, tools, and guidance for participation in a range of leadership roles and work settings.
AAHPM's advocacy on behalf of hospice and palliative medicine professionals has included continuing to push for its top legislative priority, the Palliative Care and Hospice Education and Training Act (PCHETA), which passed the House in the last two Congresses but got stuck in the Senate despite bipartisan support. PCHETA would expand opportunities for interdisciplinary education and training in palliative care—particularly for health professionals who will never specialize in the field—by establishing new education centers; physician and nurse training grants; and academic and career incentive awards for physicians, nurses, physician assistants, social workers, and other health professionals. The Academy told congressional leaders that PCHETA would help build a healthcare workforce more closely aligned with the nation's evolving healthcare needs, including during future pandemics, and urged its inclusion in COVID-relief bills and budget reconciliation legislation.
Early on in the public health emergency, AAHPM advocacy also included calling on Congress to allow telehealth for hospice face-to-face visits and advance care planning services via audio-only technology; requesting payment parity for telemedicine visits and financial relief for practices; urging safer working conditions and enhanced mental health resources for healthcare professionals on the front lines; and recommending the inclusion of palliative care in COVID-19 treatment guidelines from the National Institutes for Health. Looking ahead, the Academy is advocating for permanent telehealth flexibilities and has joined with specialty society partners to call for a federal commission to develop a comprehensive national plan to address the care needs of millions of Americans expected to suffer with "long COVID," including resources to build a clinical infrastructure, appropriate payment models, equitable access to multidisciplinary care, and funding for research
Hard Setting for Safety
According to Snider, what often goes unrecognized is that home-based healthcare workers like hospice teams regularly go into some of the worst environments for personal safety. "We don't have the ability to dictate who else is visiting the patient, or their use of masks and social distancing," she said. Early on, there were a lot of anxieties and fears among Hosparus staff about catching the virus from their patients and bringing it home to their families—on top of an already emotionally demanding job.
Hosparus adopted a number of policies to manage these concerns, including screening patients for symptoms and risk factors before every visit. "We requested that only one family member, the essential caregiver, be present when we visited the patient, and that they respect social distancing. We asked if they would put on a mask, and we provided information on the gold standard of hand hygiene and basic infection control, along with other information," Snider said.
The hospice also instituted a travel advisory protocol, whereby if the patient or family caregiver had traveled to a location with a higher rate of infection—or was otherwise exposed to viral risk—hospice staff would use additional personal protective equipment including not just face masks but also gowns, gloves, and face shields.
Other burdens to providing care included the widespread public attitudes that the pandemic wasn't serious or that face masks and other protective strategies were unnecessary—even while hospice staff were exposing themselves to viral risk by visiting the patient's home. "Yes, we've had interactions with that sentiment. We serve rural areas and have encountered a lot of misconceptions," Snider said. "We just try to stick to our core values, which include grace as a core tenet. We continue to show people grace, but if we encounter misinformation, we may try to share more accurate information with them."
Most of the hospice's staff have stuck with the agency, she added: "There's been very little turnover, even though staff are putting their life at risk in encounters that already come with a lot of emotional demands. COVID made the burden of the work even harder, so we've seen the need to provide options and outlets to support them even when we can't come together in person."
The agency has a robust grief counseling center and has offered facilitated virtual support groups and counseling to staff. "We've done resiliency training for our managers. We learned that our front-line managers were drowning under the stress, so we instituted wellness check-ins for them. We've had to find other options and outlets for our staff—anything that can be done in meaningful ways," she said. "I tell my staff I want us all to survive the pandemic. Even if we can't turn the tide toward thriving under COVID, how can we support staff so they don't reach the point of burnout? The mission of hospice has helped to carry us. For a long time, that's what we clung to. But that is wearing thin.
"In hospice and palliative care, we emphasize wellness and self-care. I knew that I needed to find different ways to fill my own cup. I still feel blessed to do this work, but in the end it's still a job," Snider added. A big fan of recreational travel as a way to unwind, she learned to take staycations and to completely disconnect from work while at home. In addition, connecting with music is important for her, as is prayer.
Because much of her work during the pandemic has been virtual, with less time dedicated to a commute, Snider could have dinner with her two young children more often. She's also leaning more heavily on mentors and peers for support. Because of COVID demands, she has not been able to make as many clinical encounters with patients, although she hasn't given that up entirely.
On September 15, Hosparus implemented a policy making the COVID vaccine a condition of employment for all of its employees and volunteers unless they have an approved medical or religious exemption. Although the impact of that mandate was not known at the time this article was being prepared, Snider did expect some negative responses.
"I acknowledge that vaccination is a personal decision, but the risk-benefit analysis for our patients and staff was absolutely clear. I was confident it was the right decision to make for our organization, and I was the point person for the executive team's decision on that requirement," she said.
In September, the Biden-Harris Administration issued an order requiring COVID-19 vaccinations for more than 17 million healthcare workers at Medicare and Medicaid participating hospitals and other healthcare settings. AAHPM also issued its own statement that calls for vaccination of all hospice and palliative care workers to protect vulnerable patients and ensure staff safety. It is available at aahpm.org/covid19.
Larry Beresford is a medical journalist in Oakland, CA, with a strong interest in hospice and palliative care.