Background. Lack of knowledge about the end-of-life treatment preferences of patients undergoing haemodialysis is problematic in the acute care setting as, often, patients are unable to communicate their treatment wishes effectively and have not previously documented their desires in the form of advance directives. Existing theoretical models offer an incomplete explanation of end-of-life treatment decisions in haemodialysis patients.
Aim. This paper reports a study exploring decisions about end-of-life treatment (e.g. cardiopulmonary resuscitation, mechanical ventilation) in people with kidney failure undergoing haemodialysis.
Methods. Grounded theory was used. Theoretical sampling led to selection of 20 haemodialysis patients (11 men and nine women with a mean age of 56) who attended three dialysis outpatient centres in central Texas. They were interviewed about end-of-life treatment plans and the use of advance directives (i.e. living wills and durable powers of attorney for health care). Interviews, transcripts and field notes from the first 12 patients were analysed by making constant comparisons. The remaining eight interviews were used for validation purposes. Data collection and analysis spanned the years 1997–2000.
Findings. When prompted to think about and discuss end-of-life treatments, haemodialysis patients chose to focus on living rather than dying. A substantive theory of ‘personal preservation’ was developed. This consists of three phases: knowing the odds for survival, defining individuality (beating the odds, discovering meaning, being optimistic and having faith in a higher force) and personal preservation (being responsible and taking chances).
Conclusions. The theory of personal preservation furthers understanding of illness behaviour and the process by which patients make decisions about end-of-life treatments. It can be used to sensitize health care professionals to patients’ desires and to enhance patient-professional communication.