Ethical Issues Associated with Family Involvement in Patient Care: A Scoping Review

Background: Family caregivers play an important role supporting patients across the care continuum. However, caregivers and health care professionals can experience ethical concerns related to family involvement in patient care. Ethical concerns can include aspects of privacy in relation to patient health information, respect for autonomy and conflicting moral choices. To date, there lias not been a synthesis of the literature examining ethical concerns related to caregivers' involvement in patient care. Objective/Aims: This study explores and synthesizes the extent, range, and nature of ethical concerns regarding family involvement in adult patient care. Methodology: A scoping review guided by Arksey and O'Malley was undertaken. A search was conducted on EMB ASE, EBP Database, Medline, Web of Science, PsycINFO, and CINAHL. Articles that were written in English, peer-reviewed, and discussed ethical concerns involving families in adult or older adult patient care were included. Data was extracted using a data extraction form and analyzed through conventional content analysis. Results: The review included 57 articles and included five primary ethical concerns. Synthesis of these ethical concerns resulted in six themes: communication between healthcare professionals, and caregivers; end-of-life decision making; truth within boundaries related to the provision of care; privacy considerations in the electronic tracking of people; discrepancies between caregiver and patient care preferences; and caregivers' decisions to be involved in patient care. Characteristics of these themes varied by illness population. Conclusions: Future research and clinical initiatives to develop and implement models of care that support family involvement in patient care must address these context specific ethical considerations.