Family Communication about End-of-Life Decisions and the Enactment of the Decision-Maker Role.

April Trees,Jennifer Ohs,Meghan Murray

doi:10.3390/bs7020036

April Trees, Jennifer Ohs + Show 1 more

Open Access

https://doi.org/10.3390/bs7020036

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Abstract

End-of-life (EOL) decisions in families are complex and emotional sites of family interaction necessitating family members coordinate roles in the EOL decision-making process. How family members in the United States enact the decision-maker role in EOL decision situations was examined through in-depth interviews with 22 individuals who participated in EOL decision-making for a family member. A number of themes emerged from the data with regard to the enactment of the decision-maker role. Families varied in how decision makers enacted the role in relation to collective family input, with consulting, informing and collaborating as different patterns of behavior. Formal family roles along with gender- and age-based roles shaped who took on the decision-maker role. Additionally, both family members and medical professionals facilitated or undermined the decision-maker’s role enactment. Understanding the structure and enactment of the decision-maker role in family interaction provides insight into how individuals and/or family members perform the decision-making role within a cultural context that values autonomy and self-determination in combination with collective family action in EOL decision-making.

Highlights

In the United States, when an individual is incapacitated at the end of life and cannot make a decision for him or herself, family members often are called upon to make decisions for the individual
Individuals who participated in family decision-making for a loved one at the end of life, either as a surrogate decision maker or as a family member involved in the communication about the decision, were interviewed about their family communication during the decision-making process
When making EOL decisions for a loved one, one or more family members took on the decision-making role

Summary

Introduction

In the United States, when an individual is incapacitated at the end of life and cannot make a decision for him or herself, family members often are called upon to make decisions for the individual. Making a decision for a family member at the end of life is one of the most emotionally difficult decisions families will ever face [1,2]. How this decision is managed has important implications for the patient’s quality of life at the end [3] and affects family members’. During decision-making, families encounter various dilemmas and challenges, including uncertainty about what to do and how to behave [4]. One important role in this context is the decision-maker role itself [5]

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Discussion

Conclusion