"When I Heard the Word Palliative": Obscuring and Clarifying Factors Affecting the Stigma Around Palliative Care Referral in Oncology.

Abstract

Palliative care (PC) can help patients with cancer manage symptoms and achieve a greater quality of life. However, there are many barriers to patients with cancer receiving referrals to PC, including the stigmatizing association of PC with end of life. This study explores factors that obscure or clarify the stigma around PC referrals and its associations with end of life in cancer care. A qualitative descriptive design using grounded theory components was designed to investigate barriers to PC referrals for patients receiving treatment at an outpatient cancer center. Interviews with patients, caregivers, and oncology professionals were audio-recorded, transcribed, and independently coded by three investigators to ensure rigor. Participants were asked about their perceptions of PC and PC referral experiences. Interviews with 44 participants revealed both obscuring and clarifying factors surrounding the association of PC as end of life. Prognostic uncertainty, confusion about PC's role, and social network influence all perpetuated an inaccurate and stigmatizing association of PC with end of life. Contrarily, familiarity with PC, prognostic confidence, and clear referral communication helped delineate PC as distinct from end of life. To reduce the stigmatizing association of PC with end of life, referring clinicians should clearly communicate prognosis, PC's role, and the reason for referral within the context of each patient and his or her unique cancer trajectory. The oncology team plays a vital role in framing the messaging surrounding referrals to PC.