Death in the ICU: what families tell us about end-of-life care
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BACKGROUND: People survive repeated health crises that used to be fatal and, at times, treatment intended to prolong life, prolongs death instead. Many people die in hospitals although they say they prefer to die at home. At the same time, research identifies multiple ways the American healthcare system is ill equipped to serve patients at the end of life. Presently, 20% of Americans die in Intensive Care Units (ICU), thus ICUs represent an important setting for learning about end-of-life care and death in America today. PURPOSE: To explore the nature of ICU care as perceived by family members, this qualitative study analyzed 693 reports from surveys mailed to family members of patients who died in the ICU of a major Boston hospital between 2009 and 2015. The study focused on experiences of received services as reported in responses to the survey’s three open-ended questions regarding helpful and unhelpful aspects of care surrounding the patient’s death. Family member experiences with social work services were also explored. METHODS: Data were assessed using the Family-centered Care (FCC) model, an emerging framework for provision of best practices in hospital settings. This framework emphasizes that patients, families, and health care providers work in partnership to set treatment goals. Since FCC has been correlated with better outcomes, one research objective here was to explore the extent to which family members’ experiences reflected the presence of FCC. The study also assessed family members’ experiences that fell outside the realm of FCC. Using NVivo software, analysis was guided by Braun and Clarke’s (2012) six-phase thematic analysis approach. FINDINGS AND IMPLICATIONS: Family members described numerous positive experiences. Deaths were humane and the delivery of FCC was evident. An in-depth data analysis provided illuminating details of FCC and explicated over 47 themes important to families’ ICU experiences. Families reported that they received emotional support, were well-informed, and were treated with respect. Findings suggest that FCC is possible in an ICU setting, supporting the use of FCC in ICU care and suggesting that it could profoundly improve the quality of end-of-life care. Responses concerning the role of social work were limited.