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Patients report poor understanding of liver disease, palliative care options

Results of an international systematic review showed that patients and their families had a poor understanding about advanced liver disease, felt they needed more information about treatments and how to get practical and psychological support, and were unaware of the potential for palliative care.

Additionally, the review showed that general practitioners and hepatology specialists often found it difficult to discuss the seriousness of advanced liver disease and the options for future care with their patients.

“Initiating early supportive and palliative care can improve symptom control in people with cirrhosis,” Joseph T.S. Low, PhD, from the University College London in the United Kingdom, and colleagues wrote. “Supportive and palliative interventions should seek to improve communication and care coordination whilst encouraging discussions on unmet information needs and end of life preferences.”

Conducting a literature search using Medline, Embase and CINAHL, Low and colleagues gathered data from 19 studies that included patient, family member and health care professional perspectives derived from interviews, surveys and focus groups.

While some patients understood that being diagnosed with cirrhosis increased the likelihood of a shorter life expectancy, most patients indicated that they lacked understanding of their disease or its prognosis, were unaware that their symptoms were related to their cirrhosis, how cirrhosis progressed, and why screening for hepatocellular carcinoma was necessary. Additionally, many patients did not consider palliative care.

Patients diagnosed with cirrhosis were twice as likely to talk to their doctors about liver disease. However, many patients reported that they were not satisfied with the quality of information, which was often too “medicalized.” Patients with alcohol-related cirrhosis and their family members noted they also felt stigmatized during health care discussions.

The studies showed that patients wanted information on a range of psychological and practical needs such as alcohol and substance rehabilitation, cancer risks and screening, losing the ability to do daily tasks, and anxiety related to future care and mortality.

“Having clearer information about their next appointments and a better understanding of their disease may enable patients to plan their life better, encourage them to continue with their treatment or reduce their level of anxiety,” the researchers wrote.

Regarding the health care professional perspective, the studies highlighted miscommunication and an assumption of duties between general practitioners and “liver experts.” General practitioners often felt it was difficult to discuss HCC with their patients and that liver specialists were responsible for conversations about prognosis, disease progression and treatment.

In contrast, liver specialists reported a lack of confidence and skills discussing those topics due to the unpredictable nature of liver disease and negative perceptions that patients and family members had about palliative care.

“Improving care coordination was identified as an important element in improving early delivery of palliative care,” Low and colleagues wrote. “Shared care models or joint multidisciplinary teams were suggested as ways to improve care coordination between liver, palliative care teams and [general practitioners] such as setting up combined hepatology/palliative care multidisciplinary teams, similar to those set up in heart failure.” – by Talitha Bennett

Disclosure: The authors report no relevant financial disclosures.