Shortfalls observed in advance care planning for cirrhosis at transplant centers

Patients with decompensated cirrhosis had insufficient advanced care planning during their trajectory of illness until end of life, according to JAMA Internal Medicine.

“Transplant center clinicians infrequently engaged patients in conversations about death and dying as well as about values, goals, and preferences regarding end-of-life care,” Arpan Arun Patel, MD, PhD, from the division of digestive diseases, department of medicine, David Geffen School of Medicine at UCLA, and colleagues wrote. “This finding may partly explain the aggressive life-sustaining treatment provided to patients at the end of life.”

Patel and colleagues conducted semistructured interviews between July 1, 2017 and May 30, 2018 with 46 clinicians and 42 patients with decompensated cirrhosis at three transplant centers in California. Clinicians included 13 hepatologists, 11 transplant coordinators, nine hepatobiliary surgeons, six social workers, five hepatology nurse practitioners and two critical care physicians.

“Patient participants were adults and had a diagnosis of cirrhosis, at least one portal hypertension-related complication, and current or previous Model for End-Stage Liver Disease with sodium score of 15 or higher,” the authors noted.

Experiences with advanced care planning observed by clinicians and patients served as the primary outcome. Clinicians and patients were asked about context, behaviors, thoughts and decisions concerning elements of advanced care planning.

Five themes were identified from experiences with advanced care planning:

• Outside outpatient visits, patient-considered values, goals and preferences were noted.

• Discussions about dying may have hindered optimistic attitudes from transplant teams.

• Clinicians discussed death to encourage behavioral changes.

• Transplant teams discussed nonaggressive treatment options with patients.

• Surrogate decision-makers were not prepared to make end-of-life decisions.

“Results of this study suggest that substantial deficits exist in advance care planning for patients with decompensated cirrhosis at transplant centers; these gaps may help explain the suboptimal end-of-life care in this population,” the authors wrote.