Cancer palliative care referral: patients’ and family caregivers’ perspectives – a systematic review

Abstract

BackgroundDespite 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.Methods4 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.Results4 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.ConclusionPatients’ 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 numberCRD42018091481.

Providing clarity: communicating the benefits of palliative care beyond end-of-life support

“…In response to noted palliative care barriers, some academics and professionals in the field have also suggested that a rebranding effort may be necessary to move beyond these barriers. 42 , 43 Such recommendations focus on breaking the stigmas that tangle palliative care with end of life. In doing so, the hope is that palliative care could be rebranded to represent services that are integrated early in the chronic disease process leading to best care outcomes.…”

Quality of referrals to specialist palliative care and remote patient triage — a cross-sectional study

“…As a result, a substantial number of persons, despite evidence of a high level of unmet needs, are referred at the near-end-of-life phase [25]. What is more, delayed referrals depend not only on late initiation of serious illness conversation or prognostication made by physicians, but may also be the result of patients' or family caregivers' wrong perspectives of palliative care [26]. This care could incorrectly be associated with an inferior form of treatment or even approaching death, while such referral can be emotionally devastating.…”

Quality of Referrals to Specialist Palliative Care and Remote Patients’ Triage – A Cross-Sectional Study

“…As a result, a substantial number of persons, despite evidence of a high level of unmet needs, the majority of patients are referred at the near the end of life phase [20]. What is more, delayed referrals depend not only on late initiation of serious illness conversation or prognostication made by physicians, but also may be the result of patients' or family caregivers' wrong perspectives of palliative care [21]. This care could incorrectly be associated as an inferior form of treatment or even approaching death, and such referral can be emotionally devastating.…”