For three weeks, the 56-year-old woman’s struggle with Friedreich’s ataxia, a rare genetic disorder that causes the spinal cord and peripheral nerves to wither, wound down in her home. She could reminisce with her mother. She could sit on her back deck, pet her dog, let the sun warm her face and hold her daughters’ hands.
One of her daughters was Kayla Herget, who in April 2015 was a physician in the midst of her residency. Her training colored how the Indianapolis native grappled with her mother’s decline.
“I saw in her signs that we were nearing the end,” Kayla said. “I experienced the pain and discomfort of that knowledge.”
The hospice care that gave Kathy “grace and dignity” inspired Kayla’s path as a healer. “There was a medical need for professionals to support our family in a way that’s different than the traditional goal of curing and more on the goal of living,” she said.
During the past year, Herget served as the first Vera Z. Dwyer Fellow in Hospice and Palliative Medicine. She gained critical experience at the Center for Hospice Care in the South Bend region, training made possible by the generosity of the Vera Z. Dwyer Trust Fund and the Hospice Foundation. The gift covers the cost associated with training specialists like Kayla at the Indiana University School of Medicine. Vera Z. Dwyer Fellows complete a 12-month fellowship program, which includes the opportunity to do a four-week clinical rotation at the Center for Hospice Care.
It also corresponds with an expansion of the facility’s center in South Bend, where ground was broken last week on a new 12-bed in-patient facility.
“Hospice and palliative medicine fellows need excellent training in hospital-based care and hospice care outside hospitals,” said Lyle Fettig, MD, who is director of the Palliative Medicine Fellowship Program and an assistant professor of clinical medicine at Indiana University School of Medicine. “Our partnership with the Center for Hospice Care helps to make sure that our fellows receive top-notch training.”
Palliative care is intended to support patients during all phases of illness, beginning at the point of diagnosis and in tandem with therapies designed to cure or improve symptoms, extending into survivorship. Often, it is confused with hospice care, which is focused on the period when a patient’s life is winding down.
The specialty is little more than a decade old, so many patients and families are unfamiliar with how it differs from hospice care. Palliative medicine physicians like Fettig are called upon to help ease a patient’s symptoms, meet their psychological needs, and bolster family and social support. The goal is to help patients—and their loved ones—navigate the complexities of care and document their preferences in what can be a period fraught with stress.
“The experience of having a serious illness is not just physical,” said Fettig. “It’s a psychological, spiritual and social one. To meet the needs patients and families face, you really need all those components working together.”
While at the Center for Hospice Care, Herget rounded on inpatient units in South Bend and Elkhart, caring for patients whose symptoms became too difficult to manage outside a clinical facility. “Many of these patients are within the last hours to days of their lives,” she said, “and are requiring frequent monitoring and medication adjustments to maintain comfort and peace for patient and family.”
The role means sitting at a bedside with a husband losing his wife, preparing four daughters to say goodbye to their mother and lauding a family member for the diligence and care he showed in managing the care of his dying father. “We cannot take away pain and sorrow, but we can intentionally be present to bear witness and comfort those who are suffering.”
For Herget, palliative care’s allure went beyond the care her mother received. Over the course of her combined residency in internal medicine and pediatrics, Herget enjoyed interactions with families that belied the clear-eyed detachment sometimes required by a physician.
“I felt more drawn to holding their hands, hugging them, really talking to them and really feeling feelings with them,” said Herget, a 2013 graduate of IU School of Medicine.
IU School of Medicine was also early adopter of palliative medicine, starting its palliative care programs in 1999.
Nineteen years ago, the program did 150 consultations a year. Now that number is more than 800. It’s staffed by four physicians, a nurse practitioner, a nurse, three social workers, a spiritual adviser and a program manager. And since 2005, up to four fellows have been trained each year.
Over the past decade, palliative care’s growth has been rapid. Today, roughly 70 percent of U.S hospitals offer services, including 90 percent of facilities with more than 300 beds. Palliative care also starts earlier. For example, Fettig consults with cancer patients shortly after they receive their diagnosis.
“We’ve moved upstream,” he said.
Access to palliative care, though, can be sporadic outside of metro areas. Only 42 percent of Indiana hospitals that act as a sole provider in a community, or have less than 50 beds, have palliative care teams.
In the South Bend region, the Center for Hospice Care has filled the gap for nearly four decades. During 2016, more than 2,100 patients utilized its services and facilities, which include seven-bed facilities in Roseland and Elkhart. Even with their services, unmet need still exists in the region and throughout the state.
Fellows like Herget are crucial to filling this gap, and the long-term goal is to use the position to construct a pipeline of palliative care physicians to the South Bend region and other areas in need throughout the state. While the initial gift from the Dwyer Trust Fund will cover the IU School of Medicine fellowship position for the first five years, the Center for Hospice Care’s goal is to endow the position by raising $1 million from donors to secure another $1 million from the Dwyer Trust Fund, which is offering the additional gift as a match.
The views expressed in this content represent the perspective and opinions of the author and may or may not represent the position of Indiana University School of Medicine.