The process used by surrogate decision-makers to withhold and withdraw life-sustaining measures in a Catholic intensive care environment

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Limerick, Michael Hyder

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Both families and health care providers struggle with the decisions regarding the amount and type of care that can be given to the terminally ill. Families most often become the surrogate for a loved one, whether the family member desires to do so or is prepared to do so. While this study was not designed to produce a how-to handbook, it does give some idea about the surrogate’s decision-making process. The purpose of this grounded theory, qualitative study was to generate a theory about the process used by surrogate decision-makers who have decided to withhold or withdraw life-sustaining measures from those for whom they act as medical decision-makers within a Catholic intensive care environment. The study was conducted with 17 surrogates of terminally ill persons who received care in an intensive care environment prior to the patient’s death. The participants in this study were recruited with the assistance of a local health care network’s nursing staff. Through direct mailings, surrogates of patients who died in the hospital were mailed invitation letters by the hospital staff. Stories obtained from the surrogates through face-to-face interviews were analyzed and through constant comparison of the data, nine themes emerged. These themes were then clustered into areas or domains representing the decision-making process. The nine themes within their respective domains include: (1) Personal Domain: rallying family support, evaluating the patient’s past and present condition and preferences, viewing the past and future quality of life for the patient, (2) Intensive Care Environment Domain: chasing doctors, expressions of the relationship with the health care team, the health care team confirms the probable medical outcome of continued treatment, and (3) Decision Domain: arriving at a new belief, getting alone to make the decision, and communicating the decision to withhold and withdraw life-sustaining measures. The themes and domains are expressed as a theory with an accompanying model. The study results have demonstrated opportunities for health care providers to improve education and change practice when trying to understand and support surrogates. Additional opportunities were found for further research to expand nursing knowledge related to the broader rubric encompassed by end-of-life issues.