Maintaining integrity in the face of death: a grounded theory to explain the perspectives of people affected by lung cancer about the expression of wishes for end of life care

Background An emphasis on patient choice in health and social care underpins a growing interest in advance care planning. Few studies have explored the views and experiences of people with advanced lung cancer about discussing their wishes or preferences for end of life care. Evidence suggests that some people may want nurses and other health professionals to initiate discussions about the future. However, there is a lack of evidence about what priority patients facing death give to their preferences and wishes, and how these shape their views about end of life. Objectives To explore the views and experiences of people affected by lung cancer about discussing preferences and wishes for end of life care and treatment. Design A qualitative study using semi-structured interviews and constant comparative method of analysis to develop a grounded theory. Settings One multi-cultural city and one post-industrial town in northern England, UK. Data were collected between 2006 and 2008. Participants Interviews took place with 25 patients with lung cancer and 19 family members. Method Qualitative constructivist grounded theory study. Results The study found that preferences and wishes for future care and treatment were not the main concern of people with cancer; rather, any concerns for the future were about the social aspects of death. A theory ‘maintaining integrity in the face of death’ is proposed. This theory purports that patients with advanced lung cancer and their families focus on acting and talking as ‘normal’ to help them balance living in the present whilst facing death. Participants talked about their experiences of facing death whilst striving to live in the present. Planning for one's own dying and eventual death was not something that people with lung cancer reported having discussed, except when, out of concern for their families, practical arrangements needed to be made following death. Conclusion The study suggests that people facing the end of their life primarily focus on living in the present. The findings suggest that nurses need to develop ways of helping people prepare for the ‘social’ rather than just the physical or ‘medicalised’ aspects of death