Oncologists’ and haematologists’ views of what facilitates or hinders referral of a child with advanced cancer to palliative care in india

Abstract

Background and aim: In India, there is high incidence, low cure rates and increased cancer-associated deaths among children with cancer. Although a significant proportion need palliative care (PC), few are referred or referred late. Oncologists and haematologists gatekeep the referral process. This study explored their views on facilitators and barriers for PC referral. Method(s): 22 paediatric oncologists and haematologists from 13 Indian cancer centres were recruited and interviewed. Data were analysed using reflexive thematic analysis. Findings were interpreted using social exchange theory and feedback intervention theory. Result(s): Four themes were generated. 1) Presuppositions about PC where qualifications, experience and being an oncologist conferred power to refer. Oncologists had mixed views about their ability to address PC needs. PC could symbolise therapeutic failure and abandonment, which hindered referral. Trustworthy PC providers had clinical competence, benevolence, knowledge of oncology and paediatrics. 2) Making a PC referral was associated with stigma, navigating illness- related factors, negative family attitudes and limited resources, which impeded PC referral. 3) There was a cost-benefit of PC referral. Symptom management and psychosocial support benefitted the patients. Teamwork, stress reduction and personal growth benefitted the oncologists. Perceived interference and communication by the PC team incongruous with oncologist’s views hindered referral. 4) Suggested strategies for developing an integrated model of PC include clear collaboration between oncology and PC, early referral, rebranding PC as symptom control and accessible, knowledgeable and proactive PC team. Conclusion(s): Presuppositions, task and cost-benefit influence referral behaviour. Continuous feedback between PC and cancer providers could foster integration and improve PC management of children.