Documentation of Patients’ Participation in Care at the End of Life

The aim of this study was to describe how patients’ participation in the care they received was documented in their health care records during the last three months of their lives. Two hundred and twenty-nine deceased adult persons were randomly identified from 12 municipalities in a Swedish county and their records were selected from different health care units. Content analysis was used to analyse the text. Four categories of patient participation were described: refusing offered care and treatments; appealing for relief; desire for everyday life; and making personal decisions. The most common way for these patients to be involved in their care at the end of their life was by refusal of the treatment and care offered. Characteristic of the different ways of participation were the diverse activities represented. The description of patients’ involvement in their life situation at this time indicated their dissociation from the health care offered more than consenting to it.