Palliative Care and COVID: One Year In

The COVID-19 pandemic’s impact on the U.S. healthcare system and the field of hospice and palliative care took center stage recently at the 2021 Annual Assembly of the American Academy of Hospice and Palliative Medicine.

In a session of COVID Conversations at the virtual conference and in outside interviews, clinical leaders and educators said they’re grateful that COVID cases appear to be waning after a horrifying holiday surge. Still, many remain concerned about the spread of new variants, scarce healthcare resources, and the long-term effects of moral distress and PTSD among healthcare providers.

“In California, the surge is abating, but we still have high death rates from cases contracted 4 to 6 weeks ago,” said Holly Yang, MD, a hospice and palliative medicine specialist with Scripps Health in San Diego, and President of the San Diego County Medical Society.

“It’s now a race against the viral variants, coupled with reopening in this state—which could come too soon and cause another surge (in cases),” Yang said. “Some people are hopeful, but a lot of us are holding our breaths. Are we in a good place, or is it just the calm before the next storm?”

Moral Distress Comes to the Fore

COVID-related moral distress is also an increasing concern, with high levels of stress and burnout reported by front-line providers, experts said at the AAHPM conference.

Moral distress is a term that emerged in nursing in the 1980s, but today it has wider applications. It describes the moral repercussions some clinicians (including physicians) face when they’re unable to do what they think is right, said Billy Rosa, PhD, a postdoctoral research fellow in psycho-oncology at Memorial Sloan Kettering Cancer Center in New York City.

“It starts at the source – some troubling and challenging incident,” then goes beyond that, Rosa said. “Moral distress is about the relationship or intersection between the incident and some kind of moral trespass that leads to distress for the clinician,” he said.

Rosa is leading a qualitative study in New York, interviewing palliative care providers about their experience meeting psychosocial needs for acute care inpatients using telehealth. He said he’s been “taken aback by the amount of moral distress I’m seeing.”

Rosa said an increasing numbers of health professionals are talking about leaving the profession. “Progress to resilience is not a given,” he said.

Some of these professionals are in “total moral pain,” which has physical, psychological, social, and spiritual manifestations, Rosa said.

“My colleagues in Liberia, Africa, many of whom lived through a civil war, reminded me of the importance of this total moral pain concept,” he said. “They say that COVID has just heightened and retraumatized their moral distress.”

Most of the time, health professionals don’t recognize this kind of distress in their colleagues until it has already reached crisis proportions, Rosa added. He encouraged clinicians to get clear on their own personal compass and code of ethics, work on self-awareness, and know their red flags—when to seek outside assistance.

Many health professionals are also dealing with isolation in their personal and professional lives, repeatedly witnessing suffering, feelings of futility, doubts, and exhaustion, said Vicki Jackson, MD, chief of palliative medicine at Massachusetts General Hospital.

In addition to practicing self-care, it’s important think about personal boundaries and how to find rest in the middle of all that’s happening, she said.

Value of Palliative Care Recognized

Amid the suffering brought on by the pandemic, the value of palliative care has become increasingly clear to generalist healthcare providers who have relied on palliative care clinicians for support in the trenches.

“They’ve turned to us often,” Yang said.

Palliative care’s expertise in communication, facilitating healthcare decision making, and managing physical, emotional, and spiritual symptoms of serious illness, have been especially important these past several months, experts said.

Jennifer Ballentine Headshot
Jennifer Ballentine

“Truly, in the absence of widely available and effective therapeutics for COVID-19, all COVID care is palliative care—and while this year has been brutal for healthcare providers in all settings, it’s shown a bright light on the particular skill set and value of palliative care clinicians,” said Jennifer Moore Ballentine, Executive Director of the CSU Shiley Institute for Palliative Care.

In acute care hospitals, palliative care teams have been a bridge and a resource for patients, families, and overwhelmed staff.

A recent survey of 2,000 palliative care providers nationally, conducted by the Center to Advance Palliative Care in December and January, found that overall respondents had experienced many new COVID-related responsibilities and an increase in volume of consultations and patient encounters over the past year.

While some also saw some negative effects—such as furloughs or reduced budgets—many felt that the value of palliative care had become more visible and had high confidence in the future viability and even growth of their programs.

Scarcity of Resources a Wakeup Call

For Marcia Glass, MD, Hospice and Palliative Medicine Fellowship Director at Tulane University in New Orleans, the pandemic has focused new attention on issues of scarcity of healthcare resources—whether personal protective equipment, hospital beds, ventilators, or trained personnel.

Those with experience in international development work or humanitarian crises are more accustomed to these issues, which are now being discussed for perhaps the first time in the U.S. healthcare system.

“We’re not used to talking about triage,” Glass said. “The themes I’ve noticed are about deprivation and scarce resources and the panic of ‘Oh, my gosh, we don’t have the resources we usually have.’”

When you move from contingency standards to crisis standards of care, the important thing is to identify and acknowledge it. “When you don’t do that, you just put all the stress on providers at the front lines,” Glass said.

The limited resources include health professionals trained in palliative care, Ballentine said.

“The COVID-19 pandemic has shown a bright light on the scarcity of palliative care-trained clinicians,” she said. “To replenish a strained workforce and meet the needs of an aging population – now with tens of thousands suffering long-term after-effects from COVID – palliative care education is needed more than ever.”

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