Advance Care Planning and Living With Dying: the Views of Hospice Patients

Abstract

Advance care planning for adults is a process of consideration, discussion and decisions about care at the end of life. There is evidence that advance care planning improves outcomes such as the achievement of preferred place of death and the quality of dying. However, the uptake of advance care planning is variable. There are calls for more research to understand what influences people to carry it out to plan services and improve the quality of life of patients and their families. This dissertation reports on a qualitative, video interview study of 15 adult hospice patients. The study was interpretative influenced by the narrative approach with data driven thematic analysis and a video aide memoir. Coding was carried out using the Computer Assisted Qualitative Data Software programme Transana. The rigour and credibility of the study was viewed through the lens of trustworthiness which included the development of a Continuous Conversation Framework. The aim of the study was to investigate what would influence hospice patients to discuss their advance care planning to develop future education programmes based upon the perspectives of people at the end of their life: 1. What influences hospice patients in their advance care planning? 2. What communication skills do hospice patients find helpful when clinicians discuss advance care planning? Three findings are reported. These suggest that the influences on advance care planning activity and conversations is the less reported relationship of the personal context of a person’s life (as well as services, diagnosis and prognosis considerations). First, the findings highlight the relevance of how people with an incurable illness live with and talk about their dying within the individual context of their daily lives. Secondly, differences are illustrated between how people prepare (for themselves) and plan (for others) in their dying. Thirdly, clinician communication behaviours such as empathy (through mutual connection and visible behaviours), tailored conversations (through accessible and selective honesty) and the design and use of space empower people to carry out conversations which support them as they live with, prepare and plan for dying. The three findings contribute to the perspective which supports the complexity of advance care planning that should focus on the context of person’s life as well as the paperwork, prognosis or diagnosis. A contribution to person-centred care is suggested through a model of relational advance care planning.