Dr. Mari Siegel feels fortunate to be in palliative care, the field of medicine and health care dedicated to the mitigation of suffering for patients with serious illnesses. It makes her feel like she’s invited into a holy space — a space that’s usually only shared with a rabbi.
“People trust me with their secrets, with their feelings, with their loved one’s care,” said Siegel, a palliative care physician at Temple University Hospital, and a member of Adath Israel of the Main Line. “It really does give me balance and fill my soul.” (Siegel was recently brought to Temple through KeystoneCare, which places palliative care doctors at Chestnut Hill Hospital and in the Einstein Healthcare network, too.)
In the last few months, Siegel’s work has taken on a new element. Because the COVID-19 pandemic has put dangerously ill patients in isolation for months at a time, their families unable to enter the hospital, doctors like Siegel are finding themselves acting as friend, confidante and family surrogate for their patients, cut off from the people who would normally fill those roles.
Though those who provide palliative care always tend to the emotional and psychosocial needs of their patients, hospitalized patients have come to lean much more heavily on their doctors and nurses for those purposes in the last eight months.
“In normal times, we’re here to support the patient and the family. We organize family meetings where the whole family can come in, and we can go over options, and we facilitate discussions,” Siegel said. “And now with COVID, in the isolation, it feels like we’re providing much more hands-on, bedside care for the patient, because we’re their only link to the outside often.”
Distinct from hospice care, palliative care is intended to optimize the quality of life for those living with life-threatening illnesses. Beyond providing the medical care needed to ensure such a thing, palliative care teams coordinate with a patient’s other doctors, and provide emotional support to patients and their families. Those teams frequently include social workers, therapists, chaplains and nutritionists, and that care can be provided to patients at home or at the hospital.
For Larry Kramer, 79, of Center City, being a patient of Siegel’s this past fall meant more than COVID-specific treatment. It meant having an advocate, Kramer said, an asset that he tried to provide himself back in his days as a physician. It meant that he had someone to call his wife and daughter to provide updates on his condition, and it also meant a steady stream of Twizzlers and Swedish Fish whenever Siegel came to check on him. In low moments, individually wrapped candies can add up to more than the sum of their parts.
“She was almost like clergy, a nurse, a social worker,” Kramer said. “And I was happy that she came and saw me.”
Palliative care doctors, Siegel said, are “trained experts in communication,” which has been a boon to their work during the pandemic. Providing emotional support and acting as a go-between for patients and their families comes naturally.
Eric Goodlev, a palliative care physician at Einstein Medical Center Montgomery, was drawn to the field in part because of the work of his wife, Lauren Goodlev, the cantor at Beth David Reform Congregation. Inspired by the meaning and sense of purpose that she drew from her work, Goodlev decided to switch from life as an academic hospitalist to his current profession.
Now, it’s the work to which he feels called. A mentor of his has described palliative care as “medical care as a ministry.” Though Goodlev doesn’t quite sign on to that description, he feels strongly that the work he does is an expression of his own Judaism. In the past eight months, his patients have come to depend on his humanity as much as they have his skill.
At Jefferson Health, Greg Garber, director of patient support services, and Brooke Worster, medical director for supportive medicine and cancer survivorship, are adjusting to discussing life and death matters with their patients’ family members over the phone, right as they’re trying to help their patients adjust to it, too.
They’re also trying to make sure that inequalities in the distribution of palliative care aren’t exacerbated even further — not every patient or their family has access to the technology needed for virtual care, for example. Worster hopes that this period has underlined the necessity of palliative care for hospitals across the country.
“This is a needed resource, and we need to look at the ways in which we can financially make it either reimbursable or sustainable for all patients to have access to it,” Worster said.
The changes are not so drastic for everyone in palliative care.
At Children’s Hospital of Pennsylvania, Dr. Miriam Stewart works with the pediatric advanced care team, providing palliative care to children. For one thing, the incidence of COVID cases among her patient population is much lower.
But Stewart and her team have needed to get creative when it comes to meeting parents, as they are not able to come into the hospital as often as they were prior to the pandemic. Like everyone, they’ve come to embrace and rely upon telehealth in ways they never foresaw.
“They’re able to remain in the comfort of their home, and we’re actually able to see them in their homes in the setting where they live, which in many cases really helped us take even better care of them,” Stewart said.