Dynamic Preferences for Site of Death Among Patients With Advanced Chronic Obstructive Pulmonary Disease, Chronic Heart Failure, or Chronic Renal Failure

Abstract

ContextTo die at the preferred site is a key principle of a good death. ObjectivesTo examine one-year stability of preferences for site of death among patients with advanced chronic organ failure, and to assess agreement between the actual site of death and the site patients indicated in advance as their preferred site. MethodsClinically stable outpatients (n=265) with advanced chronic obstructive pulmonary disease, chronic heart failure, or chronic renal failure were visited at home at baseline and four, eight, and 12 months after baseline to assess their preferred site of death. One-year follow-up was completed by 77.7% of the patients. A bereavement interview was done with the closest relative of patients who died within two years after baseline (n=66, 24.9%) to assess their actual site of death. ResultsDuring one-year follow-up, 61.2% of the patients changed their preference for site of death. During the home interview before their death, 51.5% reported to prefer to die at home. A considerable portion of the patients (57.6%) died in the hospital, and 39.4% of the patients died at the site they reported previously as their preferred site (κ=0.07, P=0.42). ConclusionPreferences for site of death may change in patients with advanced chronic organ failure. Future studies should explore whether and to what extent discussing the possibilities for the site of end-of-life care as a part of advance care planning can prepare patients and relatives for in-the-moment decision making and improve end-of-life care. Trial RegistrationNTR 1552 Dutch Trial Register.