Transitioning to Hospice: The Role of Family Communication
Patients and families coping with a terminal illness are faced with a number of decisions over the course of their disease. The decision for hospice care is often one of the most difficult and complex. Barriers and facilitators to hospice are important considerations for helping families access timely end-of-life care. For every one patient on hospice there are two others eligible to benefit from these services who never receive them (NHPCO, 2010). Using a team approach to facilitate discussion and decisions in end-of-life care may lead to increased hospice utilization. However, families facing difficult decisions are often not even asked about whom within the family might be involved with end-of-life decisions or discussions (Cisikai, 2006). Patient and family communication has been identified as an important type of communication within the transition to hospice care (Waldrop & Rinfrette, 2009). Yet little is understood about these familial interactions within the context of illness.
The question guiding this research is how do family relationships inform decisions about a patient’s care at the end-of-life? The purpose is to examine how family communication impacts decision-making in care. Goals included exploring the typology of patient and family communication in order to contribute to gaps within existing literature.
Using a qualitative design, researchers use grounded theory methods to analyze data from 20 semi-structured interviews with hospice patients and family members. A local hospice provider referred willing participants after presenting an introduction to the study during routine hospice visits. Theoretical sampling was used to identify families across ethnic backgrounds with varied patterns of communication. Researchers independently co-coded interview transcripts (Padgett, 2008) and utilized constant comparative methods alongside data collection.
Findings suggest that families are more likely to engage in early use of hospice services when a family member or close friend introduces hospice as an option and serves as an advocate for it. Typologies of family communication emerged providing context for better understanding how families communicate about illness and how these relationships shape the decision making process. For example, open family communication helped shape perceptions of illness and helped to reconstruct initial negative perceptions of hospice care. Open family communication is a facilitator to earlier use of hospice, while negative, or closed, types of communication can become a barrier to overcome in the decision making process.
Families shared stories about how they communicated affection when verbal conversation was not the primary mode of communication. Families also discussed the importance in seeking knowledge from outside sources and sharing the information between family members to aid in making decisions about care.
Conclusions and Implications
Understanding the role of family relationships and types of communication in decision-making at the end-of-life will help clinicians to identify and provide support to families who may be struggling to make decisions. Failing to recognize the role of family communication within this process could cause further delay in access to end-of-life care. Further research is needed to consider the interaction of family communication alongside other barriers and facilitators to hospice care.