Patients suffering from long COVID stand to benefit if health care providers integrate palliative care principles into their approach to treating the disease.
The U.S. Centers for Disease Control & Prevention (CDC) defines “long COVID” as situations in which patients have symptoms that last beyond four weeks of their initial infection. As of now, insufficient time has passed to determine a typical duration of this condition.
The possibility exists that it could be permanent, according to Dr. Joe Rotella, chief medical officer for the American Academy of Hospice and Palliative Medicine (AAHPM).
“We don’t know if that will, in the long run, be permanent or potentially get worse over time. But the range of experiences that have been reported are symptoms that have lasted for weeks, symptoms that have lasted for months, and symptoms that have lasted for more than a year,” Rotella told Hospice News. “There have also been some reports of people having symptoms that then get better and then mysteriously get worse again, and we don’t why it happens or what the long-term consequences will be.”
Patients with long COVID can experience a wide spectrum of symptoms, which can make the condition difficult to diagnose. To date, data suggest that fatigue, “brain fog,” and muscle and joint pain are common, according to the CDC. Patients may also experience blood clots, anxiety or depression, as well as digestive, cardiovascular, or respiratory symptoms, among others.
Other terms used to describe the condition include “post-COVID syndrome,” “post-COVID conditions,” “long-haul COVID,” and the more technical designation, “post-acute sequelae of SARS COV-2 infection,” according to the Mayo Clinic.
Due to the range of symptoms, including the psychosocial aspects, the interdisciplinary palliative care model is well suited for serving these patients, according to Rotella.
“This certainly is going to impact patients as whole people. They’re going to have social disruptions; they’re going to have practical issues; they may have spiritual concerns around it. It’s going to have an emotional impact,” Rotella said. “In that sense, someone suffering from a bad case of post-COVID syndrome might look a lot like a patient with a serious illness that we treat in palliative care, and so the way I would approach their care would be with the palliative care model.”
Though the care model could be the right approach for these patients, most may not have access to full palliative care teams during their course of treatment.
The lack of a robust reimbursement structure for interdisciplinary palliative care creates barriers to access. Currently, Medicare reimburses for palliative care physician and licensed independent practitioner services through fee-for-service payment programs that often do not sufficiently support the full range of interdisciplinary care.
Some coverage is also available through Medicare Advantage supplemental benefits in some markets, but in most cases, eligibility is limited to a narrowly defined patient population.
In addition, the incidence of long COVID is not limited to seniors or other Medicare beneficiaries, meaning many of those patients would not have access to those benefits.
“These post-COVID conditions have been observed in all age groups. It isn’t in any way limited to older people,” Rotella told Hospice News. “I really haven’t seen much evidence that would suggest that necessarily older people get it more often or get it worse.”
Another factor is the workforce shortage, according to Rotella. While this problem exists throughout the health care system, palliative care is often at a disadvantage compared to other clinical specialties.
Most medical and nursing students receive little to no exposure to hospice or palliative care during their training, and a large contingent of working clinicians don’t fully understand the nature of those services.
Nevertheless, even if the patient lacks access to a palliative care team, clinicians outside the specialty, such as primary care providers, could consider taking an interdisciplinary approach that goes beyond ameliorating physical symptoms, according to Rotella.
“The first thing we need to do is believe our patients when they describe their experience to us and then taking that holistic approach where we are not just here for the symptoms, but how they are affecting your quality of life,” Rotella said.”We should not delay in doing everything we can to help people live with it, and that might mean really important attention to their symptoms, support for their family and caregivers, access to rehabilitation, whatever it may be.”