Finitude of life in a reference hospital for infectious diseases: a descriptive study

Abstract

Background: Patients living with serious infectious diseases, such as infection by human immunodeficiency virus (HIV) or tuberculosis (TB), are candidates for palliative care from diagnosis to the advanced stage of the disease. There is a scarcity of studies on palliative care for infectious diseases. The purpose of this study was to describe the clinical and care aspects related to palliative care in patients with severe serious illness that occurs in a referral hospital for infectious diseases. Methods: We conducted a cross-sectional, retrospective study of patients who died of severe advanced disease during hospitalization in a Brazilian reference hospital for infectious diseases from January 2017 to March 2018. We defined serious illness as a health condition that presented a high risk of mortality, and negatively affected a person’s daily function or quality of life, or overloaded their caregivers. Results: There were 95 deaths during this period, of which 77 (81%) were included for analysis. Forty-nine (63.6%) were male. The mean age was 56.3 years (SD 17.34). The average time from hospitalization to death was 8.15 (SD 15.67) days. Of the 77 patients, 24 (31.1%) had active TB, 37 (48%) had HIV infection, and 21 (27.2%) had advanced neoplasia. At the time of death, 49 (62.8%) were admitted to the ward, 8 (10.2%) to the emergency unit, and 21 (26.9%) to the ICU. At the time of death, 51 (63.5%) used vasoactive drugs, 49 (62.8%) used mechanical ventilation, 17 (21.7%) underwent hemodialysis, 56 (71.7%) had a central venous catheter, 55 (70.5%) had an indwelling urinary catheter, 59 (75.6%) were on enteral diet by nasoenteral tube or gastrostomy, and 58 (75.3%) received antibiotic therapy. At the time of death, only 10 (12.9%) patients used opioids to control symptoms of late life, such as pain and dyspnea. Conclusions: Assistance for suffering in patients with severe health conditions and finitude of life, even in a hospital unit specialized in infectious diseases, occurred to a limited extent. It is necessary to evaluate the benefits of a specialized service in palliative care in order to provide better assistance to patients with this profile.