Palliative care in the final week of life of older people in nursing homes : A register-based study

Sammanfattning: Background: Current palliative care recommendations stress the right to care according to palliative principles at the end of life for all people in need thereof, regardless of care place and including those who are old. The international literature indicates that residents in nursing homes often do not have access to palliative care competence. Accordingly, insufficient management and lack of communication about end-of-life issues have been reported. There is a scarcity of robust Swedish studies about the quality of care at the end of life in nursing homes. Aim: To explore the care being provided in the final week of life of older people in nursing homes. Method: The study used data from the Swedish Register of Palliative Care, of all registered individuals aged 60 and older, who died in nursing homes 2011 and 2012. Variables pertaining to monitoring and treatment of symptoms, end-of-life discussions, and circumstances around death, and individual characteristics of the deceased individuals, were explored with descriptive statistics. Results: The most common underlying causes of death were circulatory diseases (42.2%) and dementia (22.7%). The most prevalent symptom was pain (58.7%), followed by rattles (42.4%), anxiety (33.0%), confusion (21.8%), shortness of breath (14.0%) and nausea (11.1%). Pain was the symptom with the highest degree of total relief (46.3%), whereas shortness of breath and confusion were totally relieved in 6.1% and 4.3% of all individuals, respectively. The use of valid instruments for symptom assessments was reported for pain in 12.3% and 7.8% for other symptoms. The most prevalent individual prescriptions for injection PRN were for pain treatment (79.5%) and rattles (72.8%). End-of-life discussions were performed with 27.3% of all the deceased individuals, and with 53.9% of their relatives. Of all individuals, 82.1% had someone present at death, and 15.8% died alone. Of the all nursing home resident deaths recorded, 45.3% died in their preferred place. Conclusion: There were large variations in the degree of relief from the different symptoms in the final week of life. Pain was the most prevalent symptom, and was also the symptom with the highest proportion of total/partial relief. Other symptoms were less prevalent but also less well relieved. The results indicate a need for improvements in palliative care in nursing home settings, focusing management of distressing symptoms and end-of-life discussions.