End-of-life conversation from both sides of the bed: voices of family and staff

Purpose: Prolonged living with chronic illness and disability expands the discussion of end-of-life conversation because of the complex role of intercommunication among patient, family, and healthcare staff. Little is known about such interaction from participants’ different perspectives. This qualitative case study examined end-of-life conversation among patient, family, and staff during long-term hospitalization in a neurological rehabilitation department. Methods: After the patient’s death, 18 participants responded to in-depth semi-structured interviews: 16 healthcare staff and two family members (the patient’s wife and brother). In addition, we used the wife’s autoethnographic documentation of her experiences during end-of-life conversation. Results: Thematic analysis produced three themes: (1) The Rehabilitation Department’s Mission–Toward Life or Death? (2) The Staff’s Perception of the Patient; (3) Containing Death: End-of-life Conversation from Both Sides of the Bed. These themes represented participants’ different perspectives in the intercommunication in overt and covert dialogues, which changed over time. Death’s presence–absence was expressed by movement between clinging to life and anticipating death. Conclusion: The study findings emphasize the importance of practitioners’ training to accept and openly discuss death as an inseparable part of life-long disability, and the implementation of this stance during end-of-life care via sensitive conversations with patients and their families.IMPLICATIONS FOR REHABILITATION It is vital for rehabilitation professionals to be trained to process and accept end-of-life issues as a natural and inseparable part of the life discourse among people with disabilities and their families. Rehabilitation professionals need to acquire tools to grasp the spoken and unspoken issues related to life and death, and to communicate their impressions and understandings with people with disabilities and their families. Rehabilitation professionals need to encourage an open dialogue when communicating with people with disabilities and their families on processes related to parting and death.