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

PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Palliative Care's Role Managing Cancer Pain During the Opioid Crisis: A Qualitative Study of Patients, Caregivers, and Clinicians.

CONTEXT: Patients with cancer face symptoms because of disease and treatment, and pain is common and complex. The opioid crisis may complicate patients' and clinicians' experiences of managing pain in cancer care. OBJECTIVES: In our study of perceptions and experiences with palliative care (PC) at an outpatient cancer center, we examined communication around symptom management throughout cancer care, and pain and its management emerged as particularly salient. The objective of this article is to describe, from the perspectives of patients, caregivers, and oncology health care professionals, the role of PC in navigating the complicated dynamics of pain management amidst the opioid crisis. METHODS: A qualitative descriptive study with grounded theory components was designed to investigate experiences with and perceptions of specialist PC and symptom management, including pain. Interviews were audiorecorded and transcribed, and focused coding identified themes related to pain and pain management from all three perspectives. RESULTS: About 44 patients, caregivers, and non-PC health care professionals completed interviews. Patients with cancer and their caregivers had many concerns about pain management and were specifically concerned about opioid use and stigma. For patients, PC improved pain management and helped to destigmatize appropriate pain management. Oncology clinicians reported that partnering with PC facilitated complex pain management and also provided moral support around difficult opioid recommendations for patients. CONCLUSION: PC offers the potential to uniquely support both patients and other oncology professionals in optimally navigating the complexity around pain management for cancer care in the midst of the opioid crisis.

The Role of a Symptom Assessment Tool in Shaping Patient-Physician Communication in Palliative Care.

CONTEXT: Patients with cancer experience many symptoms that disrupt quality of life, and symptom communication and management can be challenging. The Edmonton Symptom Assessment System (ESAS) was developed to standardize assessment and documentation of symptoms, yet research is needed to understand patients' and caregivers' experiences using the tool and its ability to impact patient-provider aligned care. OBJECTIVES: The objective of this study was to understand how the ESAS shapes communication between patients and providers by exploring patients' and caregivers' experiences using the ESAS and assessing the level of agreement in symptom assessment between patients and palliative care physicians. METHODS: This study used a mixed-methods design. Thirty-one semistructured interviews were conducted and audio-recorded with patients (n = 18) and caregivers (n = 13). Data were analyzed following a social constructionist grounded theory approach. Patient and provider ESAS scores were obtained by medical chart review. Intraclass correlation coefficients were used to assess the level of agreement between patient-completed ESAS scores and provider-completed ESAS scores. RESULTS: Participants reported that the ESAS was a beneficial tool in establishing priorities for symptom control and guiding the appointment with the palliative care physician, despite challenges in completing the ESAS. Filling out the ESAS can also help patients more clearly identify their priorities before meeting with their physician. There was a good to excellent level of agreement between patients and physicians in all symptoms analyzed. CONCLUSION: The ESAS is beneficial in enhancing symptom communication when used as a guide to identify and understand patients' main concerns.