Physicians’ Perspectives on Palliative Care for Patients With End‐Stage Liver Disease: A National Survey Study

Abstract

Specialty palliative care (PC) is underused for patients with end‐stage liver disease (ESLD). We sought to examine attitudes of hepatologists and gastroenterologists about PC for patients with ESLD. We conducted a cross‐sectional survey of these specialists who provide care to patients with ESLD. Participants were recruited from the American Association for the Study of Liver Diseases membership directory. Using a questionnaire adapted from prior studies, we examined physicians’ attitudes about PC and whether these attitudes varied based on patients’ candidacy for liver transplantation. We identified predictors of physicians’ attitudes about PC using linear regression. Approximately one‐third of eligible physicians (396/1236, 32%) completed the survey. Most (95%) believed that centers providing care to patients with ESLD should have PC services, and 86% trusted PC clinicians to care for their patients. Only a minority reported collaborating frequently with inpatient (32%) or outpatient (11%) PC services. Most believed that when patients hear the term PC, they feel scared (94%) and anxious (87%). Most (83%) believed that patients would think nothing more could be done for their underlying disease if a PC referral was suggested. Physicians who believed that ESLD is a terminal condition (B = 1.09; P = 0.006) reported more positive attitudes about PC. Conversely, physicians with negative perceptions of PC for transplant candidates (B = –0.22; standard error = 0.05; P < 0.001) reported more negative attitudes toward PC. In conclusion, although most hepatologists and gastroenterologists believe that patients with ESLD should have access to PC, they reported rarely collaborating with PC teams and had substantial concerns about patients’ perceptions of PC. Interventions are needed to overcome misperceptions of PC and to promote collaboration with PC clinicians for patients with ESLD.

Hepatobiliary and Pancreatic: Early palliative care referral in patients with end‐stage liver disease is associated with reduced resource utilization

“…The majority (69%) of the cohort were male participants, with a median (IQR, interquartile rage) age at study entrance of 59 years (54-69). Median (IQR) MELD score at study entrance was 26 (22)(23)(24)(25)(26)(27)(28)(29)(30)(31)(32). The most common etiology of ESLD for the study cohort was alcoholic liver disease (47%), followed by non-alcoholic fatty liver disease (22%), alcoholic liver disease and hepatitis C (16%), hepatitis C (6%), and miscellaneous causes (9%).…”

“…Others have explored this area and have suggested that these clinicians may not have the skills or confidence to initiate such confronting discussions and may also have difficulty identifying when palliative care referral should occur. [20][21][22] Upskilling The difficulties of clinicians engaging with patients in discussions concerning prognosis is reflected by the lack of documentation of resuscitation status and advanced care directives seen in this study. This finding has also been noted by other investigators who have suggested that discussions regarding prognosis occur infrequently.…”

Integrated Model for Patient-Centered Advanced Liver Disease Care

“…34 Available literature in other areas of medicine suggests that clinicians may be reluctant to initiate such discussions when patients are not experiencing severe symptoms, or when they have not exhausted curative treatment options. 55,56 Almost all (90%) patients receiving dialysis in one study reported that their clinicians had not discussed disease prognosis, 57 despite the relatively high annual mortality rate. Clinicians may avoid discussions of prognosis because they are uncertain about prognostic accuracy.…”

Nonhospice Palliative Care Within the Treatment of End‐Stage Liver Disease

“…( 23 ) For providers, barriers include uneasiness in including PC consultants, misperception of PC being just end‐of‐life care, insufficient guidelines for PC integration, inadequate access to PC providers coupled with deficiency in the PC‐provider workforce, insufficient time during routine clinical care for complex discussions, inadequate training in goals‐of‐care discussions or psychological/symptom management, and a preferential focus on life‐saving interventions. ( 24 ) Fear of upsetting patients, not wanting to abandon them, considering PC referral as an admission of failure/no hope, patients’ having impaired cognitive capacity to participate in provider‐led discussions, and providers not completely understanding the benefits of PC are other reasons. ( 4 ) For health systems, implementation and policy barriers have been identified.…”