Gastroenterologists delay or avoid referring patients with incurable liver cancer for palliative care because of negative perceptions held by patients and their caregivers, an Australian study has revealed.
While most gastroenterologists had ready access to palliative care services and rated them highly, many patients with hepatocellular carcinoma (HCC) were not referred or were referred only a few weeks before death, a survey of GESA members has found.
A survey that drew responses from 160 gastroenterologists and hepatologists found that referrals for palliative care increased with stage of disease (BCLC stages A to D) but was not universal even for patients with advanced stage (46%) or terminal (87%) stage HCC.
The study showed that 59% of respondents primarily referred patients to PC in an outpatient setting while 41% primarily referred in an inpatient setting. Common reasons for referral were end-of-life care (93%), pain (64%), nausea and/or vomiting (31%), psychological symptoms (21%), ascites management (17%) and side effects from locoregional or systemic therapy (15%).
However the study investigators, from the AW Morrow Gastroenterology and Liver Centre, Royal Prince Alfred Hospital, Sydney, noted that their previous research involving HCC patients had shown that the median time from palliative care consultation to death was three days for inpatients and 22 days for outpatients.
Two factors that influenced the likelihood of early referral of early-stage and intermediate-stage patients were previous training or rotations in palliative care, and the presence of a palliative care physician in multidisciplinary team meetings.
When asked about attitudes to palliative care, most respondents said local services were good, had adequate knowledge to manage HCC/liver disease patients, and there were few or no access issues.
However they nominated the main barriers to referral as relating to perceived patients’ negative reactions to palliative care (83%) and patient discomfort and lack of acceptance of palliative care (81%). Other barriers included caregiver’s discomfort around palliative care (77%), cultural factors (74%) and lack of time in the consultation to discuss palliative care properly (70%).
Insufficient training to communicate end-of-life issues was also identified as a barrier to referrals, with only 14% of participants having previously received training in conducting end-of-life discussions with patients.
The study investigators noted that most clinicians anticipated patients would have negative reactions to hearing the term ‘palliative care’, such as feeling scared, anxious, stressed or depressed, while very few thought they would feel reassured or secure.
They said the results suggested a need for changing negative perceptions of palliative care and integrating it into gastroenterology training and/or multidisciplinary team meetings.
“Patient and caregiver education are … necessary,” they wrote.
“Patient misperceptions that palliative care equates to end-of-life care can prevent its earlier integration which needs to be addressed by targeted educational interventions. In light of these misperceptions, a change of name from ‘PC’ to ‘supportive care’ may also be beneficial and should be considered. This notion was supported by 78% of our participants, although it has been debated and is currently not uniformly adopted.”
Palliative care referral may also be improved if the process becomes less reliant on doctors and facilitated by other healthcare workers who look after HCC patients, such as clinical nurse consultants, they added.
The findings are published in BMJ Supportive and Palliative Care.