In recent years, end-of-life care—often identified as palliative care—is gaining both positive and negative media attention and is causing many discussions within health care organizations, as standardized protocol is established and practices are put into place to create the best solutions for patients and their families.
It’s no different at UC Health University Hospital.
Since July, Kelly Rabah, director of patient support services at University Hospital and the Barrett Cancer Center, and her team, comprising Elizabeth Rabkin, MD, Karla Shearer, Darlene Neal and Mary Bogan, have been providing palliative care services on a referral basis.
They are the Patient Support Services Team.
"We have been delighted with the progress, and since our start, we have had around 210 referrals from physicians and nurses, all ending with satisfied patients and families,” Rabah says.
Rabah says her team is often called in when the health care team has done its best to help patients and their families make difficult choices for their goals of care. Sometimes, she adds, teams need additional support for the family and assistance with pain and symptom management.
"We don’t get called in every case,” she says.
"We’re often consulted when difficult decisions need to be made and the team is challenged. We have a two-fold mission: To be a collaborative and unifying voice within the health care team and ultimately to be advocates for the patient and his or her family.”
Palliative care is a medical specialty focused on improving the quality of life of people facing chronic, life-threatening illness. Emphasis is placed on pain and symptom management as well as communication and coordination of care.
The palliative care team is brought in by the health care team as consultants to truly listen to the desires of the patient and his or her family and to follow the patient in his or her care from that point forward.
This communication is continued outside of the hospital setting and can result in hours of discussions and a number of tough decisions.
"Many people think that palliative care is only applicable in an end-of-life situation,” Rabah says. "However, it’s more about improving quality of life and allowing the patient to be comfortable, to control their symptoms, and to pursue their life goals and preferred course of treatment with dignity and respect”.
Rabah says a lot of the patients managed by her team are cancer patients, and for that reason, they hold Wednesday clinics in the Barrett Cancer Center.
"Our hope is to expand and have a more regular outpatient clinic in a centralized location,” she says, adding that her team also helps patients with heart and kidney diseases, liver failure, lung disorders and even patients on dialysis.
"We’re filling a gap, and we’re here to travel the journey with these patients wherever it may go. Our job is to listen and understand what the goal of care is for each individual patient.”
Rabah says it’s not uncommon to hear people who are not knowledgeable about palliative care talk about "death panels” or to assume that their job as a palliative care team is to cut costs for the hospital.
"There is a lot of misinformation out there,” she says.
"Hospitals are a place where people are very ill, and sometimes, no amount of medical intervention can save their lives. We often say that it’s not a matter of if, but instead is a matter of when and how they will die. Sometimes we can impact the when, but we can definitely impact the how, making patients as comfortable as possible.”
She says there is need to educate the population about the benefits of palliative care.
"We are here for the patient and their families, to ensure that they have a voice and to make things as easy as possible when the time comes by helping families to plan ahead,” she says. "We want to be able to match personal values with the plan of care for each individual because it truly is the right thing to do.”
Pilot Program Looks at Improving Planning for End-of-Life Care
As part of an initiative by the Health Improvement Collaborative of Greater Cincinnati to improve end-of-life care for patients in our region, UC Health University Hospital, Christ Hospital and West Park Retirement Center, which is an affiliate of Mercy Health Partners, have begun a pilot program to improve advance care planning for patients coping with serious chronic illness.
The six-month pilot program will examine the use of a "Medical Orders for Life Sustaining Treatment” form, or MOLST, as a way to document physician orders that reflect patients’ preferences for end-of-life care.
Doug Smucker, MD, adjunct associate professor in the department of family and community medicine who is also a physician with the palliative care consult team at Christ Hospital, is leading this effort for the Health Improvement Collaborative.
"With MOLST, we will be training nurses, social workers and physicians to have detailed discussions with patients and their family members about their wishes for care if a life-altering situation were to occur, like instructions in case a patient codes, whether or not to initiate CPR, and preferences for focusing on comfort measures or more aggressive medical interventions,” Smucker says.
He says the pilot will involve training health care professionals on how to initially approach the subject and how to listen carefully to patients and their families to understand and document their care preferences.
"MOLST is just one tool in a fully integrated model of advance care planning,” Smucker says.
"We hope that this step will improve the ability of health care providers to know and honor patients’ wishes across all health care settings.”
Smucker has been helping to lead the palliative care program at Christ Hospital since January 2010 with an interdisciplinary team that has helped close to 600 families in its first year.
"Like Kelly’s team, we are there to educate and support the patient and their family and to treat the whole person,” he says.
"Now that primary care physicians rarely admit their own patients to the hospital, there are some gaps in care, especially when faced with critical decision points. Physicians and hospitals are realizing that palliative care teams fill some of those gaps. We are able to take the time needed to understand patients’ values and goals of care and to support all aspects of the person coping with a difficult illness.”