Emotional Factors Among Latinos Facing The End Of Life: Talking About Dying Makes The Illness Worse
The purpose of this study is to explore various emotional factors that hinder engagement in end-of-life (EOL) care communication between providers, patients, and family members emphasizing the needs of underserved Latino patients with advanced cancers who utilize public healthcare for treatment.
When confronting a life-limiting illness, EOL care communication activates individuals’ feelings and thoughts about death and dying. Although complex, healthcare providers have a responsibility to deliver bad news and openly discuss the risks and benefits of medical treatment as well as engage in advance care planning. Along with the uncertainty of a life-threatening illness, emotional factors influence discussions about the possibility of dying which can help people prepare for the end of life. Yet, patients and providers have difficulty engaging in such discussions. Gaps in EOL care communication contribute to mismanagement of symptoms, over- or under-use of medical treatment, and increases psychological distress. Despite these important issues, little is known about how emotional factors hinder EOL communication.
Using open-ended interviews, we explored patients’, family members’, and providers’ experiences with EOL care communication which revealed emotional factors that limit open communication about dying. Interviews were conducted in two phases: 1) with healthcare providers (n=46; 11 physicians, 13 nurses, 11 social workers, and 11 chaplains) who were asked about their experiences with EOL discussions and 2) 9 Latino advanced cancer triads; (n=27): a patient, a family member, and their physician or nurse who were also asked about EOL discussions. A grounded theory approach with a constant comparison method of analysis of all transcripts (n=71) and field notes were used.
While providers reported that they prefer to initiate EOL discussions as soon as possible, this was not always the case. Providers outlined an idealistic view of EOL care communication, as they said that they specifically talk with their patients who have metastatic cancers to identify miscommunication, elicit questions and concerns about dying, and help patients and family members make informed decisions about EOL care. In contrast, the themes that emerged from the triad data indicated that EOL discussions occurred infrequently and were limited by emotional factors. Emergent themes describe the ways in which emotions limit engagement in EOL care communication involving: 1) avoidance: a natural reaction to emotion-laden discussions; 2) mutual pretense: “You’re doing fine!”; 3) fear: talking about dying makes the illness worse; and 4) hope: only focus on positive things.
While providers have unique roles for engaging in EOL care communication, they may not be aware of how emotions negatively influence care. Due to gaps in EOL care communication, vulnerable populations might not get the information they need and simply rely on their providers for treatment. Social workers need to know how to assist patients, family members, as well as other providers with the emotional limitations that hinder communication, especially when advance care planning is needed. Further attention is needed to develop strategies to move through emotional limitations in to improve overall care quality.