In a study that sheds new light on the impact of palliative care — specialized medical care focused on pain and symptom management as well as psychosocial interventions to improve quality of life — Vanderbilt University Medical Center researchers found patients with advanced liver disease who received palliative care services spent more days alive outside of the hospital than similar patients who did not receive palliative care.
The study, published in the Journal of Pain and Symptom Management and led by Myrick “Ricky” Shinall, MD, PhD, assistant professor of Surgery, shows that patients experienced a longer period of time from the point of receiving initial palliative care services until their first hospital readmission (about 36% longer) as compared to patients in the randomized controlled trial who did not receive palliative care.
“Liver disease is a leading cause of death in the United States, and we see a large number of individuals with liver disease here because we’re a large transplant referral center,” said Sara Martin, MD, medical director of VUMC Outpatient Palliative Care and a lead study investigator. “Patients with end-stage liver disease (ESLD) have a multitude of very serious symptoms and can be challenging for their loved ones to care for. We were able to show that palliative care interventions can make positive differences for these patients.”
Advanced liver disease, or decompensated cirrhosis, is a progressive illness that develops after chronic inflammation causes cirrhosis or scarring of the liver; that scarring then significantly disrupts liver function. While the hepatitis C virus and alcoholism are leading causes, fatty liver disease from obesity is also a growing reason for development of the disease, said Martin.
The diagnosis of end-stage liver disease precedes either a life-saving liver transplant or death. As of August 2019, more than 13,000 candidates were registered on the waiting list for liver transplant in the United States.
The VUMC study, named the Creation of Models for Palliative Assessments to Support Severe Illness (COMPASS) Investigation: Testing Early and Ongoing Implementation of Palliative Care for Incurable Non-malignant Diseases (NCT03022630), began in February 2017. An interdisciplinary team science approach involving members of Hepatology and Palliative Care was taken to conduct the research.
During the two-year investigation, 63 adult patients with end-stage liver disease were randomly assigned to either receive standard medical care alone or to receive palliative care in addition to their standard care. For those receiving palliative care, investigators measured the impact of inpatient specialist consultations and regular outpatient phone follow-up calls by a palliative care nurse. During the follow-up calls, nurses assessed physical and mental function, reviewed discharge instructions, reviewed medications, discussed advance care planning and identified additional care needs. Patients were followed for six months.
Previous studies on the impact of palliative care, most often involving cancer patients, have demonstrated increased quality of life, decreased health care costs and improved survival when palliative care is introduced early in the course of cancer treatment.
“It is interesting and reassuring that even though palliative care involves no procedures — no blood tests, no X-rays and few medicines — that it can bring such great benefits to patients,” said research team senior lead Gordon Bernard, MD, director of Vanderbilt Institute for Clinical and Translational Research (VICTR) and Executive Vice President for Research at VUMC. “Its essence is improved human interaction.”
The COMPASS study was stopped before the planned three-year trial period due to difficulty in recruiting participants. Study candidates were hospitalized, were often extremely ill and were facing significant medical decisions — not an ideal scenario for asking someone to join a research study, said Mohana Karlekar, MD, medical director of VUMC’s Palliative Care Program.
The challenges the VUMC investigators met when trying to enroll study patients illustrated a need for community-based palliative care services which would have better opportunity to assist patients earlier, ideally before they became critically ill.
“Many patients travel to Vanderbilt University Adult Hospital from long distances to see our hepatology specialists, and if they are not determined to be transplant candidates, they return home to follow up with their local physician,” said Martin. “They don’t continue to return to Vanderbilt. Having a palliative care provider close to home would certainly be beneficial for them.”
Despite the small size of the COMPASS study, investigators said the results were promising and a refinement of the study model could be used for future trials to further examine the effectiveness of palliative care in this patient population.
“An additional positive outcome is that the COMPASS study opened family and patient conversations about palliative care and the meaningful benefit this specialty provides,” Cheryl Gatto, PhD, associate director of VICTR. “Speaking from personal experience, in times of crisis there can be confusion differentiating between palliative care and hospice care.”
The research team hopes to capitalize on the study’s momentum and explore other clinical areas that might benefit from increased palliative care referrals, continuing to raise awareness around palliative care and its essential place at VUMC.
