Patients' participation in end-of-life care: Relations to different variables as documented in the patients' records

Patients' participation in care is crucial for assuring patients a high quality of care based on values such as autonomy. The patients are supposed to be actively involved in care and treatment, even though these situations are complex, as in the context of end-of-life-care. The aim in this study was to identify demographic and health-related variables' relation to patients' participation during the last three months in life as documented in patients' records. The population in the present study consists of 229 patients from 49 municipalities in a county in Sweden. Data were collected from all available documentation about deceased patients who were ≥18 years of age at the time of death and who had received healthcare services during the last 3 months of their life. This article demonstrates patients' participation in end-of-life care as it was noted in the patients' documentation. Demographic variables such as age, gender, and residence did not differ between those who participated and those who did not. Patients with dementia and disorientation were separated from those who were not disoriented. There was no information about the wishes of the patients with dementia and disorientation and they were not described as participating in care and treatment. Cognitive intact patients were participating significant more often. These patients had also more symptom describes in the records. These results can indicate that a patient's participation depends upon either the patient's cognitive capability or the healthcare professionals' competence to communicate and provide adequate documentation regarding patients' participation at end-of-life. The documentation about the participation of patients with cognitive dysfunction is poor and needs further investigation, to achieve the goal of dignified end-of-life care for all patients. The results of the presents study call attention to the importance of finding innovative solutions to make patients with cognitive dysfunction involved in their care and treatment at end-of-life. Improvement of documentation showing patients' involvement in care is necessary, as is a discussion of how healthcare professionals can assure patients a high quality of care at end-of-life even if patients voices are not heard.