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Original research
Palliative medicine referrals for hepatocellular carcinoma: a national survey of gastroenterologists
  1. Abdul Hamid Sabih1,
  2. Robyn Laube2,
  3. Simone I Strasser1,3,
  4. Lynn Lim4,
  5. Maria Cigolini3,4 and
  6. Ken Liu1,3
  1. 1 AW Morrow Gastroenterology and Liver Centre, Royal Prince Alfred Hospital, Camperdown, New South Wales, Australia
  2. 2 Department of Gastroenterology, Macquarie University Hospital, Macquarie Park, New South Wales, Australia
  3. 3 Sydney Medical School, The University of Sydney, Sydney, New South Wales, Australia
  4. 4 Palliative Care Services, Royal Prince Alfred Hospital, Camperdown, New South Wales, Australia
  1. Correspondence to Dr Ken Liu, AW Morrow Gastroenterology and Liver Centre, Royal Prince Alfred Hospital, Camperdown, NSW 2050, Australia; ken.liu{at}health.nsw.gov.au

Abstract

Objectives Palliative care (PC) service involvement for hepatocellular carcinoma (HCC) patients is suboptimal and little is known about the underlying reasons for this. We aimed to study clinicians’ experience and attitudes towards PC in HCC.

Methods A nationwide survey was conducted of consultants/trainees recruited from the Gastroenterological Society of Australia membership directory. Clinician demographics, experience and attitudes towards PC use for HCC patients were collected.

Results There were 160 participants. Most attended weekly multidisciplinary team meetings (MDTM, 60%) and had no formal PC training (71%). MDTM with PC attendance was reported by 12%. Rates of PC referral increased incrementally from BCLC 0/A to D patients but were not universal even in advanced (46%) or terminal (87%) stages. Most acknowledged PC patient discussions occurred too late (61%). Those with prior PC training were more likely to refer BCLC 0/A and B patients for early PC. Referral rates for outpatient PC were higher in respondents who attended MDTM with PC present across all BCLC stages. PC service was rated good/very good by 70%/81% for outpatients/inpatients. Barriers to PC referral included clinician-perceived negative patient associations with PC (83%), clinician-perceived patient/caregiver lack of acceptance (81%/77%) and insufficient time (70%).

Conclusions PC referral for HCC patients is not universal and occurs late even in late-stage disease. Prior PC training and/or PC presence at MDTM positively influences referral practices. Barriers to PC referral are not related to quality of PC services but rather to clinician-perceived patients’ negative reactions to or lack of acceptance of PC.

  • liver
  • end of life care
  • hospice care
  • terminal care

Data availability statement

Data are available on reasonable request. Deidentified data from participant surveys can be made available on request to the corresponding author. This can be made available immediately after publication to researchers with a methodologically sound research proposal to perform further research.

https://doi.org/10.1136/bmjspcare-2020-002807

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    Data availability statement

    Data are available on reasonable request. Deidentified data from participant surveys can be made available on request to the corresponding author. This can be made available immediately after publication to researchers with a methodologically sound research proposal to perform further research.

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    Footnotes

    • X @CigoliniMaria

    • Contributors AHS and KL performed the data collection and analysis; AHS and KL drafted the article; AHS, RL, LL, MC, SIS and KL critically revised the article. All authors have read and approved the final version including the authorship list.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.