‘Viewing in slow motion’: patients', families', nurses' and doctors' perspectives on end‐of‐life care in critical care

Abstract

To explore the meaning of end-of-life care for critically ill cancer patients, families, oncologists, palliative care specialists, critical care consultants and nurses. End-of-life care for critically ill patients, of whom nearly 20% will die in critical care, remains somewhat problematic (Truog et al. 2008). End-of-life care is an established domain in cancer; however, research has not been conducted previously into dying, critically ill cancer patients' experiences. Qualitative, phenomenological in-depth interviews were undertaken. Phenomenology was used to explore experiences of 27 participants: surviving patients at high risk of dying, bereaved families, oncologists, palliative and critical care consultants, and nurses. Purposive sampling from a UK critical care unit was carried out. In-depth interviews were taped analysed using Van Manen's phenomenological analysis framework. A phenomenological interpretation of dying in cancer critical illness, and the impact on opportunities for end-of-life care, is presented. Three main themes included: dual prognostication; the meaning of decision-making; and care practices at end of life: choreographing a good death. End-of-life care was an emotive experience for all participants; core tenets for good end-of-life care included comfort, less visible technology, privacy and dignity. These findings are discussed in relation to end-of-life care, cancer and critical illness. The speed of progressing towards dying in critical illness is often unknown and subsequently affects potential for end-of-life care. Caring was not unique to nurses and end-of-life care in critical care came with considerable emotional cost. There is an opportunity for nurses to use the care of patients dying in critical care to develop specialist knowledge and lead in care, but it requires mastery and reconciliation of both technology and end-of-life care. Healthcare professionals can help facilitate acceptance for families and patients, particularly regarding involvement in decisions and ensuring patient advocacy.