Cancer patients' care at the end of life in a critical care environment: perspectives of families, patients and practitioners

Innovations in cancer care requiring intensive support, and improved cancer patient survival in and out of critical care, have led to greater numbers of cancer patients than ever accessing critical care. Of these, however, a fair proportion will die. Current research points to around one in six patients dying in general critical care units and even higher numbers for cancer patients. End-of-life care (EOLC) for critically ill patients is problematic and rarely addressed beyond satisfaction or chart review studies, while palliative care is an established domain in cancer. It is not known whether dying, critically ill cancer patients experience good EOLC. In the context of a cancer critical care unit, this thesis explores the provision of EOLC for cancer patients in a critical care unit. Exploring measures for comfort care and palliative principles of care helped identify what is important for patients and families, and what those measures meant for all participants. The diagnosis of cancer and how it impacts on EOLC provision for critically ill cancer patients was also explored from the perspective of patients, families, doctors and nurses. A Heideggerian phenomenological interview approach was undertaken, in order to gain personal experiences. Families of those patients who died after decisions to forgo life-sustaining treatment (DFLSTs) were interviewed. Patients who have experienced critical care were also interviewed, since patients‘ views about EOL care provision are very rarely explored. Doctors and nurses also contribute their vision for, and experiences of, EOL care in a cancer critical care unit. Thirty one interviews with 37 participants were carried out. Cancer prognosis together with critical illness prognosis contributed to difficulties in deciding to move to, and enact EOLC. The nursing voice in DFLSTs was minimal and their role in EOLC depended on experience and confidence. Achieving a good death was possible through caring activities that made best use of technology to prevent prolonged dying. EOLC was an emotive experience. Decision-making and EOLC could be difficult to separate out which, in turn, affects prospects for EOLC. A continuum of dying in cancer critical illness is presented with different participants‘ experiences along that continuum. Three main themes included: Dual Prognostication; The Meaning of Decision-Making; and Care Practices at EOL: Choreographing a Good Death with two organising themes: Thinking the Unthinkable and Involvement in Care. These themes outlined the essence of moving along a continuum toward patients‘ deaths and the impact that had on opportunities for care and a good death. Nurses could use the care of patients dying in critical care as an opportunity to develop specialist knowledge and lead in care, but this requires mastery and reconciliation of both technology and EOLC. This work builds on Seymour‘s (2001) theory of a negotiated and natural death related to achieving a good death in critical care. Trajectories of dying, part of Seymour‘s (2001) theory, are extrapolated on with reference to Glaser and Strauss (1965) and Lofland (1978)‘s theories on dying trajectories. Nursing theory is developed through examination of Falk Rafael‘s (1996) and Locsin‘s (1998) theories of empowered caring. Implications and propositions are presented for nursing and wider practice around EOL care for critically ill cancer patients.