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Cancer palliative care referral: patients’ and family caregivers’ perspectives – a systematic review
  1. Lipika Patra1,
  2. Arunangshu Ghoshal2,
  3. Anuja Damani3 and
  4. Naveen Salins3
  1. 1 Bagchi-Karunashraya Palliative Care Centre, Bangalore Hospice Trust, Bhubaneswar, India
  2. 2 University of Toronto, Toronto, Ontario, Canada
  3. 3 Department of Palliative Medicine and Supportive Care, Kasturba Medical College Manipal, Manipal Academy of Higher Education, Manipal, Karnataka, India
  1. Correspondence to Professor Naveen Salins, Palliative Medicine and Supportive Care, Manipal Academy of Higher Education, Manipal, Karnataka 576104, India; naveen.salins{at}


Background Despite the evidence of palliative care benefits, referrals are infrequent and delayed. Patients and their caregivers are essential stakeholders in the referral process with valuable perspectives. This review systematically explored their perceived facilitators and barriers to palliative care referral.

Methods 4 subject-specific databases (PubMed, Cumulative Index to Nursing and Allied Health Literature, PsycINFO and EMBASE), 3 multidisciplinary databases (SCOPUS, Web of Science and Cochrane database) and 11 journals from 1 January 1990 to 31 May 2022 were searched; and scored for their methodological rigour using Hawker’s tool. Findings were synthesised using Popay’s Narrative Synthesis method and interpreted using decision-making theory.

Results 4 themes were generated from 14 studies: (1) The timing of referral should be right and communication must be comprehensive. Delays in initiating serious illness conversations, prognostication, and decision-making hindered referral. In contrast, the presence of symptoms facilitated it. (2) Referral was equated to death, and as an inferior form of treatment, a rebranding might mitigate the stigma. (3) Referral made families feel emotional and devastated; explanation and team initiatives enabled the normalisation and positive coping. (4) Long-term holistic palliative care facilitated a positive care experience and a sense of reassurance and satisfaction, enabling a smooth transition from curative to comfort care. The late referral was associated with perceived inadequate symptom management, diminished quality of life and death and complicated bereavement issues.

Conclusion Patients’ and caregivers’ predisposition to palliative care engagement was influenced by timely referral, comprehensive communication, perception and stigma about palliative care. Longitudinal association with the palliative care team mitigated negative perceptions and improved satisfaction and coping.

PROSPERO registration number CRD42018091481.

  • Cancer
  • Terminal care
  • Supportive care
  • Quality of life
  • Family management

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  • Contributors LP: formal analysis, resources, data curation, writing—original draft, writing—review & editing, visualisation. AG: methodology, formal analysis, resources, data curation, writing—original draft, writing—review & editing, visualisation, supervision, project administration. AD: data curation, writing—review & editing. NS: conceptualisation, methodology, formal analysis, resources, data curation, writing—review & editing, visualisation, supervision, project administration, responsible for the overall content as the guarantor.

  • 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; internally 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.