Family Perspectives on End-of-Life Care A Metasynthesis

Aim: The objective of this study was to explore family perspectives of end-of-life care in long-term-care settings from interviews of family members who have had a loved one die in a long-term-care facility. Background: Researchers have identified the need to examine end-of-life care in long-term-care settings. By exploring family perspectives on the dying process, the intention of the researchers was to further expand the knowledge and standards of care regarding the end-of-life care. To pursue this goal, the researchers interviewed family members who had lost a loved one in a long-term-care facility during the prior 3 to 18 months. The research questions were as follows: (1) What was your family member's end-of-life experience like for you and your family? (2) Were the providers aware of your loved one's wishes (eg, compliance with an advance directive)? (3) What recommendations/advice do you have for healthcare providers giving patients care at the end of life? Methods: Participants in three student research groups conducted a series of 19 interviews exploring family members' perspectives after the death of an elderly loved residing in one of four long-term-care facilities between 2008 and 2010. The face-to-face interviews allowed family members of deceased frail elders to share what their family members' end-of-life experiences were like for them and their families. Investigators used qualitative content analysis to examine the interview data. Then, the investigators conducted a metasynthesis to explore the 19 interviews as one data set, identifying categories and uncovering important factors in end-of-life experiences. Findings: Open and frequent communication among the patients, family members, and healthcare providers emerged as essential to satisfaction of all participants at the end of life. Families desired frequent updates about the status as well as the care being provided to their loved ones. The recognition of impending death and prompt communication to families was identified as a significant factor for family satisfaction at end of life. Caring and highly experienced staff members allow families to feel comfortable with the care their loved ones are receiving. The presence of thorough and updated advance directives was reported as useful by the families involved, especially in shaping family decision making that focused on fulfilling patients' wishes. Families found the use of detailed advance directives removed the decision-making burden off of them and ensured that the patients' wishes were followed. Conclusion: Family members noted a quality of end-of-life experience to be characterized by open communication, continuity of providers and preparing families for the impending death of their loved one. In addition, having detailed advance directives in place also helped ensure adherence to the patients' wishes.