Dying at home in Norway: Health care service utilization in the final months of life

Abstract

Background: Although many people prefer to die at home, few people die at home in Norway. We know little about sociodemographic characteristics of people who die at home, the extent of palliative end of life care provided by health care services and whether they enable people to die at home. Aim: Investigate individual characteristics of decedents, health care service utilization in the last three months of life and associations with dying at home. Method: Population-based registry data from the Norwegian Cause of Death Registry were linked with other Norwegian registries, covering all decedents in Norway within 2012-2013, with data from the last 13 weeks before death. Paper 1 investigated individual sociodemographic factors and estimated potentially planned home deaths that occurred at home. In Paper 2, trajectories of home nursing services and admissions to short-term skilled nursing facilities were estimated. Potentially planned home deaths for deaths in all locations were also estimated. Paper 3 investigated follow-up from general practitioners, OOH services and hospitalizations. Associations with home deaths and factors of interest were estimated by regression analyses in all papers. Results: Overall, 15% of the total population (22% of the community-dwelling) died at home. We estimated that 24% of community-dwelling people (16% of total population) had deaths that were potentially planned to occur at home, regardless of actual location of death; nearly a third occurred at home. The most common causes of death at home were circulatory disease (35%) and cancer (22%). The predicted probability of dying at home increased with 39% when cause of death was symptoms/ill-defined and 9% for external causes of death but decreased with 12% for cancer compared to circulatory disease. In total, 18% of men and 12% of women died at home. There was a trend where younger decedents were more likely to die at home, ranging from a 39% predicted probability in people <40 years to 8% in those ≥90 years. For the community-dwelling, we estimated four trajectories of home nursing services and four short-term skilled nursing facility trajectories. Almost half received no home nursing. A quarter received a high level of home nursing; almost 7 hrs/wk. This was the only home nursing service trajectory associated with dying at home compared to hospital (aRRR 1.29). A fifth had decreasing home nursing and about 8% accelerating home nursing towards the end of life. Almost 70% had a low probability of having a short-term skilled nursing facility stay. Another 7% had intermediate probability, 16% escalating probability and 8% increasing probability of a short-term skilled nursing facility stay. Trajectories of increasing (aRRR 0.40), escalating (aRRR 0.32) and intermediate skilled nursing facility (aRRR 0.65) were associated with reduced likelihood of dying at home. Almost half the people with causes of death that predicted a potentially planned home death followed the high home nursing service trajectory. Nearly all people with potentially planned home deaths followed the trajectory with low probability of skilled nursing facility stays. During the last 13 weeks, 14% of the total population received ≥1 GP home visit, 43% ≥1 GP office consultations and 41% had GP interdisciplinary collaboration. A minority had OOH consultations, while hospitalizations escalated. During the last four weeks, 7% of patients (10% of community-dwelling) received ‘appropriate’ follow-up with ≥1 home visit when the GP had ≥1 interdisciplinary collaboration. GP home visits (1: 3%; ≥2: 7%) and interdisciplinary collaboration (1: 2%; ≥2: 5%) increased the predicted probability of dying at home in a dose-dependent manner. Health care services where the person had to leave home, including GP office consultations, OOH consultations and hospitalizations reduced the predicted probability of dying at home. Conclusions and implications: Few people died at home and many home deaths appear to have been unplanned. At a population level, follow-up from GPs and home nursing services at the end of life may enable people to die at home. Our results imply that most people dying in Norway do not receive enough ‘appropriate’ follow-up to make a home death feasible. The potential for delivering palliative end of life care at home is not utilized. To enable more home deaths, we should start talking about our preferences regarding end of life care and place of death. The way forward must include both an individual and a system perspective to give dying people a real choice about where they spend the end of life.