- This qualitative study explored the experiences of 15 patients with end-stage liver disease (ESLD) and 14 caregivers to identify their needs as they transitioned from hospital to home
- Few patients with ESLD and their caregivers received adequate disease education at the time of diagnosis. For many it was deferred to an outpatient visit weeks or months later, and caregivers often were not involved in discharge planning
- Both patients and caregivers reported feeling unprepared for the psychological and economic consequences of ESLD
- Participants' suggestions for supportive care resources include a discharge checklist, list of online resources, referral to mental health care, caregiver support and financial navigation
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Patients with end-stage liver disease (ESLD) have high rates of early hospital readmission: over 25% are readmitted within 30 days. Paradoxically, early follow-up visits to subspecialists actually increase the rate of readmission.
Nneka N. Ufere, MD, faculty of the Cancer Outcomes Research and Education Program in the Massachusetts General Hospital Cancer Center, Lara Traeger, PhD, psychologist in the Mass General Cancer Center and the Behavioral Medicine Program, Areej El-Jawahri, MD, assistant in Medicine in the Division of Hematology and Oncology at the Mass General Cancer Center, and colleagues say patients with ESLD and their caregivers have specialized needs that require intensive care coordination at the time of hospital discharge. Their recommendations appear in Digestive Diseases and Sciences.
Between April 2019 and May 2019, the researchers conducted 30-minute semistructured telephone interviews with 15 ESLD patients and, separately, 14 caregivers (there were 12 patient–caregiver dyads). All patients had been newly diagnosed with ESLD in the hospital, then discharged to home (median time since initial hospitalization, 25 months; range, 3–122 months). Eight were listed for liver transplantation.
The interviewees identified four main themes: (1) informational needs, (2) psychosocial needs, (3) practical needs, and (4) supportive care resource suggestions for both patients and caregivers.
The ESLD diagnosis came as a shock for almost all participants, usually during life-threatening acute decompensation. Many patients had limited prior knowledge of ESLD and didn't know how advanced their liver disease had become.
The hospitalization was highly distressing for many caregivers, who described it variously as "traumatic," "a whirlwind" and "calamitous" due to the suddenness and their fear that their loved one would die.
Information retention was impaired in the acute setting for both patients and caregivers.
In addition, at discharge, many participants felt unprepared to manage medications, nutrition and symptom monitoring. Several caregivers said they were not involved in discharge planning and didn't know where to get accurate information about ESLD.
Many participants didn't receive disease education until their first outpatient visit to the hepatology clinic, which for some occurred weeks to months after hospitalization. Too often, the delay led to unplanned readmission.
Patients reported that as they began to recover from their acute illness, they felt overwhelmed and unable to imagine what life would be like with ESLD. The sudden loss of control and inability to plan for the future often led to a depressed mood.
Caregivers expressed difficulty coping with the uncertainty of the illness trajectory and worrying whether their loved one would be able to undergo curative liver transplantation.
All caregivers reported substantial unforeseen disruptions to their daily routines. Due to the unpredictable course of ESLD, they had to contend with unexpected deteriorations, unplanned hospitalizations and increasing dependency.
Patients faced reduced work capacity or sudden loss of employment, and along with rising medical care costs, this often produced significant financial hardship. Many caregivers also experienced financial losses because of having less time for paying work.
Suggested Resources and Targeted Interventions
Study participants identified multiple resources and interventions that they believe would help themselves and their caregivers with ESLD management. These include:
- Inpatient medicine and hepatology services should collaborate to write discharge instructions in patient-centered language; include advice about what symptoms to watch for and who to call if they arise
- Include caregivers in discharge planning
- Consider post-discharge tele-education about the liver and ESLD
- Provide a list of websites to trust for further information
- Make early referrals to specialty palliative care and/or mental health providers
- Warn caregivers of the emotional and physical burden ahead and help them prepare a support network
- Assess financial status early and refer to social work and related services
It is clear from this study that clinicians must develop new models of care delivery. Such models, when established, may improve patients' quality of life and care.
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