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Advance Care Planning Needed Earlier for Patients with End-stage Liver Disease

Key findings

  • In response to a national U.S. survey, gastroenterologists and hepatologists said misperception about the role of palliative care (PC) is the leading barrier to its utilization by patients with end-stage liver disease (ESLD)
  • Unrealistic patient/caregiver expectations about prognosis and competing demands for clinicians' time are also substantial barriers to PC utilization by patients with ESLD
  • Discussions about advance care planning occur most often during acute hospitalizations or when death is clearly imminent, and most respondents said discussions about end-of-life care occur too late in the course of ESLD

End-stage liver disease (ESLD) is often a terminal condition. In the absence of liver transplantation, median survival is two years. Specialty palliative care (PC) has been shown to improve the quality of life of patients with cancer and other terminal conditions, but research published in the Journal of Palliative Medicine, published by Eva Chittenden, MD, director of education programs in the Palliative Care Division at Massachusetts General Hospital, and colleagues, suggest that such services are underutilized by patients with ESLD.

Nneka N. Ufere, MD, research fellow in the Gastrointestinal Unit, Areej El-Jawahri, MD, assistant professor in Medicine at Mass General, and colleagues recently surveyed U.S. gastroenterologists and hepatologists to examine their beliefs about barriers to PC for patients with ESLD. In Clinical Gastroenterology and Hepatology, they suggest multiple interventions targeted to patients, caregivers, clinicians, medical educators and institutions.

A National Survey

Between February and April 2018, the researchers sent a web-based survey to 1,236 physician members of the American Association for the Study of Liver Diseases who provide direct clinical care to adults with ESLD. There were 396 respondents. 60% were transplant hepatologists, and 79% practiced in a teaching hospital. None reported formal training in PC.

Attitudes about PC

The large majority of respondents (88%) indicated that PC specialists, rather than gastroenterologists or hepatologists, are best suited to provide PC to patients with ESLD. Most respondents (86%) agreed that patients with ESLD would benefit if PC were provided earlier in the course of the illness.

Conversely, 84% of respondents said that gastroenterologists or hepatologists, not PC specialists, should discuss advance care planning with patients who have ESLD.

Barriers to PC Utilization

The survey identified multiple barriers to the use of PC:

  • Patient- and caregiver-related barriers: Nearly all respondents said patients and caregivers have misperceptions about PC due to cultural factors (95%) and that patients have unrealistic ideas about prognosis (93%), as do their caregivers (90%)
  • Institutional barriers: Physicians commonly reported limited reimbursement for time spent providing PC (76%) and insufficient recognition by colleagues on the importance of PC (68%). Close to half (46%) reported that their center lacks a PC service
  • Clinician-related barriers: Respondents most commonly reported that the barriers to providing quality PC are competing demands for clinicians' time (91%), fear that PC destroys patients' hope (82%) and the belief that PC begins when active therapy ends (81%).

Advance Care Planning

Advance care planning is a critical component of PC in which clinicians help patients discuss their expected illness trajectory and their goals and preferences for medical care at the end of life. In the survey, the most commonly reported barriers to timely advance care planning were:

  • Inadequate communication between clinicians and families about goals of care (84%)
  • Insufficient cultural competency training about end-of-life care (81%)
  • Insufficient clinician training in communication about end-of-life care (80%)

Half of the respondents (50%) reported that they typically have initial discussions about resuscitation status during acute hospitalizations. Only a minority discuss resuscitation status during a period of clinical stability (29%) and even fewer at the time of diagnosis (11%).

Physicians most frequently reported that initial discussions about hospice care (42%) and preferred site of death (43%) occur when death is clearly imminent. Most of them, 81%, said discussions about end-of-life care occur too late in the course of ESLD.

Recommendations for Improvement

There are multiple barriers to the delivery of high-quality PC for patients with ESLD, including:

  • Patient misperceptions of the purpose of specialty PC
  • Competing demands for clinicians' time
  • Lack of access to PC specialists
  • Insufficient communication among patients, families and providers that leads to a gap in treatment

To address these barriers and improve the quality of PC, the authors recommend the following solutions:

  • Targeted educational interventions to inform patients of the benefit of PC
  • Outpatient specialty PC visits coordinated with gastroenterology and hepatology visits
  • For practices lacking specialists, enlistment of social workers, psychologists and psychiatrists to offer support or additional layers of support
  • For practices with a wealth of PC researchers, provision of additional PC education and training to hepatologists
  • Creation and testing of methods that enhance clinician–patient communication about advance care planning following a diagnosis of ESLD
of gastroenterologists/hepatologists report limited reimbursement for palliative care provided to patients with ESLD

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