“Like Not Having an Arm”: Perspectives of Patients, Caregivers, and Practitioners on the Impact of Visitor Restrictions on Cancer Care During the COVID-19 Pandemic (RP405)

Abstract

Outcomes1. Understand how caregiver absence affected the patient and caregiver dyadic relationship2. Understand how caregiver absence affected cancer and palliative care practitionersImportanceVisitor restriction policies to prevent the spread of COVID-19 between patients and practitioners have been widespread during the pandemic, resulting in the exclusion of caregivers at key points of cancer care and treatment decision making.Objective(s)Explore how visitor restrictions impacted cancer treatment decision making and care from patient, caregiver, and practitioner perspectives.Method(s)71 interviews, including 48 cancer patients, 4 family caregivers, and 19 cancer and palliative care practitioners from four academic cancer centers in the US between August 2020 and July 2021.ResultsVisitor restrictions that prevented caregivers from participating in clinic appointments and perioperative hospital stays were universally disliked by patients, caregivers, and practitioners. Patients felt deprived of an advocate to help ask questions and to process and retain medical information when patients felt overwhelmed or impaired with “chemo brain.” Caregivers discussed that visitor restrictions made them feel “out of the loop” and increased their anxiety about the patient's care. Cancer practitioners described how visitor restrictions impaired care because caregivers were not present to share valuable health information that the patient may have forgotten or neglected to mention, and clinicians had to spend extra time to call caregivers to relay information. Some surgical oncologists expressed moral distress because they perceived that the absence of caregivers negatively affected their patients’ health outcomes because caregivers were not there to provide emotional support during hospital stays.Conclusion(s)Our data indicate that the structure of the medical decision-making relationship is more tripartite than bilateral, with caregivers being a significant third actor within the medical decision-making process. Caregivers provided support in the decision-making and care process to both patients and practitioners, and their absence created additional burden on both.ImpactAs the pandemic continues into its second year with new surges and a return to visitor restrictions, health systems should reconsider visitor policies to ease the emotional and physical burden on patients, caregivers, and practitioners.