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Cultural perceptions impede palliative care in end-stage liver disease

Most gastroenterologists and hepatologists felt that the key barriers to palliative care for patients with end-stage liver disease included perception of palliative care and unrealistic expectations about prognosis, according to results of a recent survey.

“Unfortunately, ESLD is a terminal condition for many patients, who either die while awaiting a liver transplant or are deemed ineligible for liver transplantation,” Nneka N. Ufere, MD, from the Massachusetts General Hospital, and colleagues wrote. “The significant morbidity and mortality associated with ESLD makes the provision of early palliative care (PC) and advance care planning (ACP) discussions important considerations for this vulnerable population.”

Ufere and colleagues conducted a cross-sectional study of a national sample of hepatologists and gastroenterologists to examine their perceptions of current patient, caregiver, institutional, and clinician barriers to PC use and timely ACP for patients with ESLD. Of the 396 physicians who completed the survey, 60% were hepatologists and 79% practiced in a teaching hospital. No physicians reported formal palliative care training.

Most physicians responded that centers providing care for patients with ESLD should have PC services (95%), that patients with ESLD would benefit if PC were provided earlier (86%), and that a hepatologist would be the best person to discuss ACP with patients compared with a PC clinician (84%).

Almost all respondents agreed that cultural factors influenced the perception of PC (95%) and that both patients (93%) and caregivers (90%) had unrealistic expectations about prognosis.

Physicians commonly cited limited reimbursement for time spent providing PC (76%) and insufficient recognition by colleagues of the importance of PC (68%) as institutional barriers. Most cited competing demands for clinicians’ time (91%), fear that PC destroys patients’ hope (82%), and belief that PC begins when active therapy ends (81%) as clinical barriers.

Factors reported as barriers to ACP included: inadequate communication between clinicians and families about goals of care (84%), insufficient cultural competency training surrounding end-of-life care (81%) and insufficient clinician training in communication about end-of-life care issues (80%).

“Our study demonstrates that hepatologists and gastroenterologists perceive substantial barriers to PC utilization and timely ACP discussions for patients with ESLD, and most responding physicians believe that [end-of-life] care discussions occur too late in the course of illness in this population,” Ufere and colleagues wrote. “Multiple interventions targeted at patients, caregivers, institutions, and clinicians are needed to overcome barriers to improve the delivery of high-quality palliative and [end-of-life] care for patients with ESLD.” – by Talitha Bennett

Disclosure: The authors report no relevant financial disclosures.