Quality Matters in End-of-Life Communication
The problem of how to make decisions near the end of a person’s life has attracted much attention in recent years. Interventions have proliferated, new organizations dedicated to addressing the problem have been created, and public service campaigns have been launched both within the medical field and by members of the press, artists, and legal professionals. Research on end-of-life decision making has reached consensus about the importance of communication about end-of-life issues as a way to improve the quality of end-of-life care, reduce suffering, and lower healthcare costs. However, few of the interventions that have been introduced have actually improved end-of-life discussion. This is likely because most interventions have focused on increasing theamount of communication about end-of-life issues without paying attention to the quality of that communication.
The purpose of our recent study was to challenge the assumption that more communication is better communication by demonstrating how people talk about end-of-life matters. To capture communication quality, we focused on how well individuals pay attention to three broad types of goals in conversation: task goals (such as making an end-of-life treatment choice or naming a healthcare proxy), identity goals (such as maintaining one’s autonomy or being a responsible parent), and relational goals (such as preserving a close relationship or not damaging a relationship).
In this study, we analyzed conversations between 121 pairs of older parents and their adult children. In the conversations, the pairs discussed various end-of-life issues, including where they would prefer to receive end-of-life care, which life-sustaining treatments they would like to accept or refuse, and how they define “quality of life.” A team of four student coders rated the participants’ communication in terms of attention to task, identity, and relational goals, and we examined how participants’ goal attention was related to several outcomes.
We found people who paid better attention to task, identity, and relational goals were more satisfied with the conversation, felt more hopeful after the conversation, experienced less hurt after the conversation, and felt less relationally distanced after the conversation.
These findings suggest potential guidelines for how families can successfully have end-of-life conversations. First, a common recommendation offered by researchers and practitioners is that families should “be open” when discussing end-of-life issues. However, we found having a successful end-of-life discussion is not just about being open. So rather than offering the blanket recommendation to “be open,” the conversations we studied provide examples of what optimal openness might look like. For instance, talking about what decisions would be made in specific hypothetical situations (“Once I start having to wear diapers, that’s the time to put me in a nursing care facility”) or real third-party situations (“If I ever get to the point where I’m like Uncle James, don’t take me out in public”), and explaining what factors might change a specific decision (“Right now I’m okay with being put on a mechanical ventilator, but if I ever get Alzheimer’s, then I wouldn’t want to be on the ventilator”) can provide a good basis for family members in the event that they must take over decision making for a loved one.
Second, our findings suggest considering how certain end-of-life choices affect people’s identities and relationships will make for better outcomes than if identities and relationships are not considered. In fact, the observable quality of attention to identity and relationships was more consistently related to better conversational outcomes than attention to the task itself in the conversations we studied. This means that expressing approval of the other person (“I think your decisions make a lot of sense”), respect for the other person’s autonomy in making health decisions (“I support whatever choice you make”), and affirmation of the relationship (“I’m glad we’re close enough to talk about this kind of thing”) can give needed reassurance of how much a family member is valued and of the strength of the relationship.
The problems that result from a lack of quality communication around end-of-life issues are well documented. Many programs that attempt to deal with these issues focus on ensuring conversations happen or on documenting the wishes of patients. Our results demonstrated attention to task, identity, and relational goals is one way better or worse outcomes are brought about in family conversations about end-of-life health decisions. Many initiatives to improve end-of-life care can be enhanced by integrating training that helps people identify and correct issues related to task, identity, and relational goals in end-of-life communication.