Fully Integrating Patients, Caregivers, and Family Members Into the Palliative Care Team in Rural Populations

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When Patricia Fogelman, DNP became the first non-physician System Medical Director for the Guthrie Clinic, she knew it was a new version of the status quo. “There’s a lot of work to be done, I’m here to help.” Fogelman explained as she began to establish new protocols and procedures for the Palliative Medicine Program.

Getting her start as a hospital volunteer, Fogelman describes her career pathways into healthcare as “extremely good fortune.” Working as an RN in the Intensive Care Unit, and then as a Nurse Practitioner in a private Pulmonary medicine practice, she was later recruited to Cardiothoracic Surgery at Columbia University where she was the Clinical Chief for the Lung Transplant/Advanced Lung Disease Program. Following her marriage, Fogelman followed her spouse to Pennsylvania where she accepted a position at Geisinger, a rural health system in north-central Pennsylvania. Working first in General Internal Medicine, she then moved on to Palliative Care followed by Pulmonary/Critical Care and Sleep Medicine. It was then that she helped build the system’s integrated/comprehensive Palliative Medicine service for inpatients and outpatients. Inspired by a patient who became an incredible mentor and friend, Fogelman took interest in creating a clinic for patients with advanced lung disease and went on to establish the first Pulmonary-Palliative Clinic in the country at Geisinger Health system.

When Guthrie recruited her to lead the Palliative Medicine program, she went to work quickly, establishing metrics and constructing billing models and templates within the first six months. “There were disproportionate amounts of ‘automatic referrals’ to Palliative Care that did not demonstrate a clear understanding of the specialty,” she shared. “We worked hard to partner with our key stakeholders, improve our visibility, build relationships while educating our providers and learners across disciplines so that we were utilized as effectively as possible.” She believes strongly in partnership and collaboration. By integrating both principles into the mission of palliative care delivery, her team was able to more accurately identify and care for patients and families who were in significant need of support.

During the course of program building, Fogelman noticed grandparents raising young grandchildren while their parents were at work. “When the older family members’ health declined, people focused on the patient, and disregarded the children.” Fogelman explained. Recognizing the need to support children left behind, she asked herself: “If one of my most loved friends was sick, what would I want for their children?.”

In partnership with Care Compass Network (CCN), Fogelman’s colleague Josephine “Josie” Anderson Robles helped secure funding that allowed Fogelman to create the Palliative Care Children’s Resource Library. Josie served as the Director of NYS DSRIP and Community Relations prior to her retirement from Guthrie and championed for Dr. Fogelman and her Palliative Care program.

After significant research, the library grew to include books suitable for a range of ages from toddlers to teens, offering behavioral workbooks, journals, novels with relatable themes and coloring books. Some of the titles include, Wherever You Go My Love Will Find You, Freddie the Leaf and Angel Catcher for Kids. Dr. Fogelman pre-screened all the books herself. “I needed to be sure the materials we were handing out would be helpful. I knew the children needed time and we needed to help them work through it. I reached out to friends and asked if they would let me share the books with their own children for some real-time feedback and that really helped me identify the best choices to provide for our patients and their families.”

Soon the library became so robust that the remaining funds were available to create a similar library for adults. Fogelman brought the adult resource library to Alzheimer’s and other advanced illness patients and their families. This collection includes narrative workbooks and gratitude journals including Our Story Memory Book, Keeping Love Alive When Memories are Fading, and When Becoming a Caregiver Hurts. Go Wish and Re-Think flash cards were also acquired for the library, helping palliative team members work through conversations with patients in deeply meaningful ways. “Unfortunately, most health systems don’t have the capacity to offer in-person structured therapy,” Fogelman explained. This is especially challenging in rural areas where the patient population is spread throughout a vast geographic area. “We had to think out of the proverbial box to do better for the people we serve.”

Following the success of the program in helping patients and children, the Palliative Medicine team expanded their focus to include providers. Now, any Guthrie patient at any location can be scheduled in the outpatient clinics whether at the Robert Packer Campus in Sayre, PA or at their Corning locations.

“We’ve also been able to provide a lot of support utilizing the resource library during the pandemic,” Fogelman shared. During a time when patients and their families felt very isolated, the library offered a way to broaden their world. Fogelman and her team were a daily presence in the COVID ICU and she made herself available after hours and on weekends, helping frequently as a result of the consult protocols.

The Palliative Medicine program at Guthrie is comprised of Inter-disciplinary teams (IDTs) which pull together healthcare providers from all specialties. They meet regularly, share information about their cases and monitor results. “Ultimately, we are aiming for optimizing quality of life and increasing care giver satisfaction,” she explained. “My personal mission every day is to strive to be sure my work helps reduce human suffering. Sometimes this means with patients and sometimes it’s with or for my colleagues.”

On October 8th, Dr. Fogelman will speak as part of CCN’s Lunch and Learn series. She will highlight what it means to receive and provide Palliative Care, and will share her experience leading a transformative program. The webinar is free and takes place from 12:00pm to 1:00pm. Interested participants can register online.