Designing Effective Interactions for Concordance around End-of-Life Care Decisions: Lessons from Hospice Admission Nurses.

Abstract

Near the end of life, hospice care reduces symptom-related distress and hospitalizations while improving caregiving outcomes. However, it takes time for a person to gain a sufficient understanding of hospice and decide to enroll. This decision is influenced by knowledge of hospice and its services, emotion and fear, cultural and religious beliefs, and an individual’s acceptance of diagnosis. Hospice admission interactions, a key influence in shaping decisions regarding hospice care, happen particularly late in the illness trajectory and are often complex, unpredictable, and highly variable. One goal of these interactions is ensuring patients and families have accurate and clear information about hospice care to facilitate informed decisions. So inconsistent are practices across hospices in consenting patients that a 2016 report from the Office of Inspector General (OIG) entitled “Hospices should improve their election statements and certifications of terminal illness” called for complete and accurate election statements to ensure that hospice patients and their caregivers can make informed decisions and understand the costs and benefits of choosing hospice care. Whether complete and accurate information at initial admission visits improves interactions and outcomes is unknown. Our recent qualitative work investigating interactions between patients, caregivers, and hospice nurses has uncovered diverse and often diverging stakeholder-specific expectations and perceptions which if not addressed can create discordance and inhibit decision-making. This paper focuses on better understanding the communication dynamics and practices involved in hospice admission interactions in order to design more effective interactions and support the mandate from the OIG to provide hospice patients and their caregivers with accurate and complete information. This clarity is particularly important when discussing the non-curative nature of hospice care, and the choice patients make to forego aggressive treatment measures when they enroll in hospice. In a literal sense, to enroll in hospice means to bring in support for end-of-life care. It means to identify the need for expertise around symptom management at end-of-life, and agree to having a care team come and manage someone’s physical, psychosocial, and/or spiritual needs. As with all care, hospice can be stopped if it is no longer considered appropriate. To uncover the communication tensions undergirding a hospice admission interaction, we use Street’s ecological theory of patient-centered communication to analyze a case exemplar of a hospice admission interaction. This analysis reveals diverse points of struggle within hospice decision-making processes around hospice care and the need for communication techniques that promote trust and acceptance of end-of-life care. Lessons learned from talking about hospice care can inform other quality initiatives around communication and informed decision-making in the context of advance care planning, palliative care, and end-of-life care.