Treatment and care of patients with serious illness in the end of their life is often burdensome. Caregivers (family related or cohabitant) are often a great resource and support during the disease course of critical ill patients, but are at the same time at great risk of becoming physically and mentally ill. Knowledge of how end-of-life treatment and care of the patient affects the patient’s caregivers is lacking. By studying the impact of end-of-life treatment on the health care utilization of caregivers, this study seeks to improve end-of-life decision making and to better meet health care needs of family caregivers of the seriously ill.
The aim of the study is to characterize healthcare utilization including contact with primary and secondary sector (somatic and psychiatric), utilization of drug and municipality services for caregivers of patients with seriously illness before and after the patient die.
This study has the following specific hypotheses:
- Family caregivers will have decreased health care utilization during the patient’s illness that will increase following the patient’s death.
- Family caregivers of patients who undergo high intensity treatment at end-of-life will have higher healthcare utilization post-death compared to low intensity treatment.
The study is nationwide including all adults decedents dying of natural causes from 2009 to 2015. For each decedent the family will be identified including parents, siblings, children, grandchildren and great grandchildren. All persons will be followed in nation-wide registers to identify healthcare utilization before and after decedents death.
Period of project
2018-2020. Results will be published in peer-reviewed scientific papers.