Palliative care grows in Butler Health System
The Latin word palliatus means “to cloak.”
“We cloak every aspect of a person's life, and we don't take away any of the other pieces that are part of it, but we infiltrate those spaces and support them there,” said Jenna Rhodaberger, a palliative care social worker.
Palliative care is complex symptom management and advanced care planning for people with serious or terminal illnesses, said Lisa Doverspike, a physician's assistant.
Butler Health System's palliative care program opened its doors in August 2015. The BHS Outpatient Services, located at 245 Butler Commons, launched in October 2016 for people with serious illnesses.
At the time, health system administrators saw a need to develop high quality palliative care in Butler County for improved symptom management.
The program affects more than 2,000 people in the community annually, said Dr. Kathy Selvaggi, a palliative care physician and director of the palliative care program for the Butler Health System.
As the population ages and people have longer life expectancies and multiple ailments, the need for palliative care is also growing.
Recently, palliative care has gained momentum nationally, said Dr. Dillion Stein, a palliative care physician.
Palliative care in U.S. hospitals has increased, according to the 2018 Palliative Care Growth Snapshot issued by the Center to Advance Palliative Care. The prevalence of hospitals with 50 or more beds having a palliative care team increased from 658 to 1,831, a 178 percent increase from 2000 to 2016.
The rise in prevalence of palliative care in U.S. hospitals has been steady over the past 16 years. In 2000, less than one-quarter of U.S. hospitals, 658, had a palliative care program, compared to three-quarters, 1,831, in 2016.
“Part of what the health system saw is a growing need as the population gets a little bit older and shifts,” Stein said.
Since its inception in 2015, the program has gradually increased in staff and the number of patients served.Palliative care is different for everyone and tailored to each patient and family.The person still has their underlying illness, but the goal is retaining a quality of life during that time.“People think to come see us they can't be on therapy anymore and that's not true,” Rhodaberger said. “Almost all the patients we are seeing in clinic are still on medications. The goal is to improve their quality of life.”Patients vary from adults of all ages with cancer and noncancerous illnesses to serious, chronic issues, including heart and lung diseases and dementia, Doverspike said.Medical care is aligned with the patient's goals, Stein said.“Quality of life (for one person) could mean sitting and watching TV in their house or right by their dog, while someone else should be out running marathons,” Doverspike said.The reason behind the patient's goal becomes the focus for treatment, Stein said.“The 'why' is such an important part of the person that we dig a little bit more into the why,” he said.An interdisciplinary team of physicians, social workers, nurses, chaplains and pharmacists work to assist patients. The group approaches the psychosocial, financial, advanced directives and care of each patient, Rhodaberger said.The staff advocates for treatment and action to help patients keep their quality of life, Doverspike said.In addition to working with patients' primary or treating physicians, the palliative care team also relies on community services to get patients the help they need, Selvaggi said.“Many people don't really know what a social worker can provide for them, but most of the time people start spilling to me what they are trying to navigate while they're in the hospital or at home,” Rhodaberger said. “Sometimes, it's just the connection of how do I get help (at) home or how do I talk to my kids about the fact my husband is dying, what do I do about going to work and still being able to find care for him?“Really, it's what's important to people and how they can try to manage all that beside serious illness.”One job is to help patients and families understand what is going on, so down the road they can make decisions based on good medical information.Many patients seen in the intensive care unit, or ICU, are among the most ill patients in the hospital, Selvaggi said.At times, they see patients hours before their death.In a short period, they determine how to keep the patient comfortable and manage their symptoms. Additionally, they try to secure the patient a private room and ensure medications are available.“We try not to have people die here in the hospital,” Stein said. “Our goal is to get people out of the hospital.”This is when they lean on hospice care services to take over and get the patient to an inpatient facility or their home.“Nine out of 10 times, that's out of the hospital,” he said. “Usually, people can say where they want to be or picture themselves.”
Palliative care is different from hospice care. If someone has a serious or terminal illness and they feel preparations for end of life and the comforts of home are most important, then hospice is the choice for them, Stein said.If a person desires to pursue curative or life-prolonging medications, palliative care is their choice, Doverspike said.“It's about talking with people and figuring out what are their goals, what things are important to them and how do we align that with the medical care that they get,” Stein said.While hospice has a narrow criteria for acceptance determined by Medicaid, patients who seek palliative care can have an indefinite life expectancy at any point in their disease, Rhodaberger said.The team digs deeper into the reason why people choose palliative care as an extra layer of support while pursuing curative treatment.“We sit down and talk to patients and families or whoever their caregivers are about what's important to them, what bothers them the most — symptoms, stressors socially, emotionally, physically — and then we match the medical care, the social supports with those,” Doverspike said.People often confuse palliative care — quality of life — with hospice care — quality of death — Selvaggi said, adding her team works to change perceptions of delivered care.“Palliative care has grown so much as well because that's not the conversation we're having,” said Rhodaberger. “Our conversation is how can we improve your quality of life and talk quality over quantity and hospice, not that it has a bad reputation, but to many people that word can be really daunting to approach.”Educating people about palliative care is important, said Selvaggi, who has spoken to the community, newspapers, churches, synagogues and at national meetings.“You can't make good decisions about what you want if you don't know,” she said. “I think education is empowering.”
A national focus in the medical care field is the health care worker's resiliency and how they can take care of themselves and their well being, Stein said.Palliative care workers develop a deeper threshold or tolerance for conversations about death, rather than them becoming easier, Rhodaberger said.“At the end of the day, I go home and feel like I've contributed something, and even though we don't always see what things play out after the hospital — we don't see that family again — we were able to be present with them and sit in that pain with them,” she said. “I think, to me, at least that's enough. That's enough for me.”More than the next medicine, victories are the times when they provide a ride for a family member to see their dying loved one or when they check on a family and have a connection with them beyond the pain, medicine or a living will, Stein said.At the same time, while palliative care work can be stressful and emotional, it is gratifying, Selvaggi said.“You sit with a lot of emotion, grief, crying, but on the other hand ... It's very rewarding,” she said. “I think for families or patients to know that they're walking this walk with someone of our team ... That's calming for a lot of people to know they're not going down this road alone.”
