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Neuropalliative Care During COVID-19—How Clinicians Help Patients and Families Cope with Isolation, Fear, and Life-Limiting Illness

As the calls kept coming, it became apparent that nearly everyone agonized over the same heart-rending decision: With COVID-19 affecting a disproportionate number of residents in US long-term care facilities, should they bring their elderly relative to live at home?

Farrah N. Daly, MD MBA, a neurologist and hospice and palliative medicine specialist in northern Virginia, received many such calls. When the pandemic took hold this spring, she counseled many adult children of older people with neurologic disorders to think things through.

Most likely, the risk of virus exposure would be lower at home, but COVID-19 strains could lurk anywhere. She cautioned that their loved ones "could be unlucky in either location.

Lending an empathetic ear, Dr. Daly advised every caller to consider how much hands-on care Mom or Dad would require. How much help does he or she need getting in and out of bed or a chair, or navigating in a bathroom? And would durable medical equipment be accessible?

The "logistics of the home" factored into that thought process. "A lot of family members realized that it actually wasn't feasible" for an elderly parent to move in with them, Dr. Daly said, while acknowledging the emotional upheaval in reaching this foregone conclusion.

Others felt they could manage the care for a week or two, but not much longer, if the pandemic persists. "Families are really having to make choices where there's no right answer," she said. "They're just having to make the best choice that they can under difficult circumstances."

Gut-Wrenching, Complex Discussions

Neurologists who specialize in palliative care have been engaging in many gut-wrenching conversations with patients and families saddled with the complexities of chronic and terminal conditions. In the context of COVID-19, neurologists, neuro-oncologists, and palliative medicine physicians are improvising health care delivery, acquiring new know-how and applying telemedicine to delicately broach the subject of advance care planning even with stable patients.

As the pandemic weighs heavily on people's minds, the openness of discussions unfolding on video feeds from patients' living quarters allows physicians to naturally bring up advance care planning, said Christina L. Vaughan, MD, MHS, associate professor and chief of the division of neuropalliative care in the department of neurology at the University of Colorado, Anschutz Medical Campus in Aurora, CO.

While Dr. Vaughan said many neurologists believe palliative care should be reserved for the end of life, she contends that it is appropriate at any stage of a serious chronic or life-limiting illness. The specialty aspires to match a patient's goals and values to the treatment plan while easing various forms of suffering—from physical to psychological, spiritual, and practical. An interdisciplinary team helps the patient experience "more good days than bad."

The Challenges of Telehealth

Rendering palliative care services via telehealth appointments is more difficult because she can't observe body language from head to toe, and she can't hold someone's hand. But there are silver things—such as meeting more family members than the typical person accompanying a patient to the clinic.

"It's like a modern version of an old-fashioned home visit," Dr. Vaughan said. "This has really sparked a lot of conversation. So much of palliative care is understanding someone's story and what is important to them."

For instance, a veteran with Parkinson's disease shared photographs of himself in uniform from the Vietnam War, reflecting on proud moments from his storied life. His wife's presence next to him was reassuring to Dr. Vaughan when she asked him to get up and use his walker.

That's when one of Dr. Vaughan's worst fears turned into reality: witnessing the man take a tumble during a telemedicine encounter. "You feel helpless for having him fall while trying to examine him," she admitted, but thankfully, he wasn't hurt. "He said that hadn't happened in a long time."

Performing a neurological exam via telemedicine can be tricky. As a movement disorders specialist, Dr. Vaughan is able to assess mental status, some cranial nerves, and abnormal movements, but not reflexes, muscle tone, or sensation.

Breaks in video streaming—the brief freezes that occur relatively often—can complicate the evaluation of Parkinson's symptoms. To avoid such interferences, she recommends maintaining a robust internet connection.

That connection allows Dr. Vaughan to continue seeing patients as regularly as she did before the pandemic. "It's important if we can, on the medical side, to reach out proactively to our patients," she said, as the number of ancillary services has dwindled—a necessary measure to stymie infections or prevent flares of symptoms. "We're eager to help them."

Feelings of Isolation

In many locations, home health aides have stopped coming. So have physical and occupational therapists. For residents of long-term care facilities, meal service has moved out of dining halls and into individuals' rooms. Spouses and adult children can no longer visit.

As the COVID-19 pandemic spread throughout the states, such changes have become the norm and the need to take precautions is paramount.

Fewer encounters with visiting providers and social interactions with loved ones have amplified feelings of isolation. Some patients are walking less often and experiencing setbacks more frequently. Still, others are surviving and even thriving in the face of unprecedented adversity.

"I've been surprised by the resilience of so many patients," Dr. Vaughan said. "There are plenty of people who are rising to the occasion in our patient pool. So often, we don't give people credit for being as resilient as they are."

Family caregivers also have shown incredible resilience. They have been particularly hard-hit by social distancing and protecting their loved ones from COVID-19 risk. Now, they're managing gaps that adult day care workers, neighbors, and other family members filled in the pre-pandemic world, said Benzi M. Kluger, MD, MS, FAAN, professor of neurology and medicine and founding director of the neuropalliative care program at the University of Rochester Medical Center in Rochester, NY.

Virtual house calls are a welcome paradigm shift. The new arrangement means they're unburdened from traveling long distances to medical appointments, said Dr. Kluger, a neurologist who specializes in the new and growing field of neuropalliative care.

His neuropalliative care program offers virtual access to caregiver support groups, a chaplain, a social worker, and a psychotherapist. The team can tailor solutions to families' needs.

When a woman whose husband has dementia was struggling to find time for herself, for example, they came up with a plan: His four adult children would take turns talking with their father on the phone for one hour each time over the course of the week. Familiar voices alleviated the man's anxiety while his wife got a reprieve, Dr. Kluger said. She caught up on work and bills or relaxed in the garden.

Like palliative care, hospice often can be provided at home. "The goal of hospice really is comfort and to provide an alternative to going into the hospital," he said. But patients who "need a greater level of support," such as those with hard-to-control pain or severe dementia-induced confusion or agitation, can receive inpatient hospice care.

Just as the pandemic has accelerated the demand for telemedicine, it has escalated the need for palliative care skills to manage COVID-19 patients, Dr. Kluger said.

The pandemic has been a particularly scary time for immunologically compromised patients, said Neha M. Kramer, MD, assistant professor in the departments of internal medicine and neurology at Rush University Medical Center in Chicago, where she specializes in hospice and palliative medicine.

"A patient in her late 30s who has Duchenne muscular dystrophy (DMD)  has been afraid to leave her room in the home she shares with her parents and siblings," Dr. Kramer said. "The panic attacks, wrought by worries of contracting coronavirus, compel her to go to great lengths to minimize exposure."

Her lungs are already compromised, and she's connected to a breathing machine at home. When she used to visit Dr. Kramer in the office, she relied on a portable ventilator, as well as a wheelchair.

[Although DMD usually affects males, there are rare instances of symptomatic female carriers with the classical, severe phenotype, Dr. Kramer explained. Dr. Kramer said she suspects that the patient may not have the second X chromosome altogether, or one of the X chromosomes is damaged, or there is skewed X inactivation.]

Another patient, a woman in her early 20s with centronuclear myopathy, relies on a ventilator to breathe while asleep. She lives with her parents and can't leave the house in the winter other than for a doctor's appointment, because she's always at risk for an infection.

"This pandemic, the quarantining is not much different for me," Dr. Kramer recalled the patient telling her, "so now, the rest of the world kind of understands what I'm going through."

Social Determinants of Health

With shelter-in-place orders and expansion of telehealth services, physicians can see the social determinants of health and barriers to care with their own eyes. A glimpse inside a patient's home can be quite revealing, noted Roy E. Strowd III, MD, MEd, MS, associate professor of neurology and oncology at Wake Forest University School of Medicine in Winston-Salem, NC.

On the other hand, "delivering bad news that pertains to cancer recurrence and progression is extremely difficult via video or telephone. Nonverbal cues, including body language, are critical in such conversations, particularly when patients have exhausted treatment options and it's time to transition to hospice care," Dr. Strowd said. Telemedicine doesn't lend itself well to these circumstances, added Dr. Strowd, a neuro-oncologist who is also editor of the neurology residents and fellow section of the journal Neurology.

The pandemic also has altered the dynamic of interactions in the clinic, "where not being able to shake a hand or share a hug is a tough new reality that we must respect, as we maintain the safety of our patients and staff through physical distancing," he said.

Patients in advanced stages of brain cancer or with other cognitive impairment may not understand why family members no longer visit or why they wave through a window but don't enter the facility or room, said Alissa A. Thomas, MD, a neuro-oncologist who is assistant professor of neurological sciences and neurology residency director at the University of Vermont Medical Center in Burlington.

Such changes in routine also compound the stress and anxiety for loved ones, so staff in hospitals and long-term care settings often go above and beyond the call of duty to connect them with patients through technology. "We are trying to adapt as rapidly as possible," Dr. Thomas said, "but the parameters that we're working with are changing each day."

Even so, "I've been impressed by how fast facilities have been able to get iPads in the building and sort of ramp up," she added. "I have to give so much thanks to our nurses and our medical assistants, who really spend large amounts of their day setting up Zoom visits and FaceTime," as well as providing more emotional support to patients coping with isolation and fear of infection with COVID-19 due to a compromised immune system.

Near the end of life, the pandemic has led patients and their families to think long and hard about where and how they want to approach the dying process. Bereavement can be even more traumatic if most family members aren't allowed at a patient's bedside in the final days or moments, said Tobias Walbert MD, PhD, MPH, director of the neuro-oncology fellowship and co-director of the Hermelin Brain Tumor Center at Henry Ford Health System in Detroit.

"The stakes are much higher for patients dying in the hospital, with possible isolation and limited access to family because of the visiting restrictions," said Dr. Walbert, who is also associate professor of neurology and director of the neuro-oncology fellowship at Wayne State University School of Medicine in Detroit. That's when some essential questions come to the forefront of these challenging conversations: "What is quality of life? How is that defined? How do you want to live these days, weeks that you have?"

For some patients, he said, soaking in "15 minutes out in the spring sunshine on the porch" may be "more meaningful than trying to grasp for the last straw in the oncology clinic" or a hospital, especially during a pandemic.

"At the end of the day," Dr. Walbert explained, "palliative care in neuro-oncology is really about helping patients and their families to maintain the best quality of life and to guide them, so that they can make the sometimes-difficult decisions that are right for them."