Palliative care is often misunderstood, at least at first. “I’ve had the experience of walking into a patient’s room and saying, ‘I’m from palliative care’ and a patient just bursts into tears,” said Andrew Putnam, MD, who was among Yale’s first palliative care attendings when he arrived in 2012. Such reactions are less common than they were a decade ago, but it’s still a chilling term to some. That is why members of the Palliative Care Program at Smilow Cancer Hospital can find themselves describing who they aren’t even before clarifying what they do.
“We are not the grim reapers of hospitals. We’re more like the Power Rangers or PAW Patrol of medicine,” explained Yale New Haven Hospital’s outpatient palliative care Chaplain Jane Jeuland, MDiv in introducing her new podcast ‘In The Midst of It All.’ “We are not just for people who are dying, we are a group of people who are committed to alleviating suffering in whatever way we can.” Alleviating suffering is a broad portfolio that can range from symptom management to pain control or from facilitating a bedside wedding ceremony to reuniting patients with estranged family members. Not surprisingly, the palliative care team is strongly interdisciplinary and includes social workers, a pharmacist, a psychologist, nurses, bereavement counselors, advanced practice providers, attendings, and fellows.
“I think there is a lot of joy in our work,” said Elizabeth Prsic, MD, Director of Inpatient Palliative Care. “It’s patient focused care to the most seriously ill people in the hospital and what that means for each patient is as different as every patient.” In her years with the program, Dr. Prsic said supporting the critically ill goes well beyond balancing medications and treatment, beyond negotiating the complexities of insurance and finances. Support can mean bringing a patient peace, fulfilling a wish, or even delighting them. Dr. Prsic recalled the team securing a marriage certificate from city officials so that a critically ill man could marry his longtime love, or arranging to allay the fears of another patient who was deeply worried that his wife wouldn’t know how to use the snowblower because that had always been his responsibility.
One of the more memorable joys, Dr. Prsic said, was the time that the hospital brought in volunteer ballroom dancers to twirl and spin their way down the hallway outside a patient’s room so that she could once again enjoy what had been a lifelong passion. “The patient was smiling and clapping, it brought her so much happiness, there were lots of happy tears,” she said.
"It’s patient-focused care to the most seriously ill people in the hospital and what that means for each patient is as different as every patient."
Dr. Elizabeth Prsic
Exponential Growth
The Palliative Care Program began with three people—one physician and two nurse practitioners—in 2008, the year it was recognized nationally as a medical subspecialty. “They were really pioneers. They worked hard to establish the value of [palliative care],” said Jennifer Kapo, MD, who is Chief of Palliative Care. Recruited in 2012 from the University of Pennsylvania, Dr. Kapo has grown the now nationally-recognized program to include 35 members who form the interdisciplinary team. Team member Christina Holt, MSN, APRN (BC), ACHPN, OCN, was recently recognized nationally by The Cunniff-Dixon Foundation with a nursing award for outstanding end-of-life care. About 70 percent of the patients under palliative care have cancer diagnoses and the other 30 percent are patients oft en with multiple illnesses.
“Administratively we are under Yale Cancer Center, but we serve the whole hospital,” Dr. Kapo said. “We are that extra layer of support over your medical specialists [here to] address any needs that you have.” Expanding training opportunities in palliative care has also elevated Yale’s leadership in palliative care. “We’re focused on growing the number of well-trained palliative care clinicians to better meet the needs of our patients,” Laura J. Morrison, MD, Director of Hospice and Palliative Medicine Education and Fellowship, said.
In addition to training two fellows a year up until last year when the cohort grew to three, Dr. Morrison coordinates a series of two-week rotations for medical students, residents, and fellows from other specialties, and specialized curricula to meet department requests for training. Increasing the diversity of representation within the field of palliative care nationally is a priority, and in July, the team welcomed the first class of four fellows, two of whom are from underrepresented in medicine minority groups.
Growing To Meet Goals
Outpatient palliative medicine in the 16 Smilow locations is where Dr. Kapo sees “real value, longitudinally” in helping patients achieve their goals of care, which often include less time in hospital settings in favor of more time at home. Decreasing the length of stays and patient mortality in the hospital will take the focus of all teams, including palliative care, Dr. Kapo said. Support systems to facilitate treatment and care at home, skilled nursing facilities, or hospice can be complex and require frequent coordination with clinical teams in concert with caregivers.
Dmitry Kozhevnikov, DO, Director of Ambulatory Palliative Care, said relationships are the not-so-secret ingredient to success and that they take time as there is “confusion about the role of palliative care in patient’s lives.” And that confusion can be on the part of the patients, caregivers, and even members of the care team, he said.
“You have to give people time and space to think about what they are hoping for in the future (and then to) align what they’re hoping for with their treatment,” Dr. Kozhevnikov said. “It’s not just medical issues, there are human, life issues.” The thorny life issues—those comprise most of what palliative care teams manage. Dr. Putnam said he often explains that about 20 percent of his time is spent on palliative-related matters, while 80 percent is devoted to caring for and talking through issues with patients and their caregivers, being aware of the importance of candor as well as compassion.
There are so many questions to be answered and choices to be made, Dr. Putnam said, adding: “It’s a privilege that people let me into their lives at one of the most difficult times. If we can make things easier for people, that’s what gets us up in the morning.”