Making healthcare decisions for terminally ill adults and elderly in rural Bangladesh: an application of social autopsy

Nurul Alam, Hafizur Rahman Chowdhury, Sayed Saidul Alam, Taslim Ali, Peter Kim Streatfield, Ian Douglas Riley, Alan D Lopez
2019 Journal of global health reports  
This study investigated healthcare decision-making surrounding terminal illnesses of adults and elderly persons (aged 15 years or more), who later died at home, hospitals, or in-transit, in a rural, low-income area of Bangladesh where out-of-pocket health expenditure is very high. There were 1330 adult and elderly deaths in Matlab Health and Demographic Surveillance site in 2013. To record how decisions were made and implemented when caring for terminal illness, and how treatment-related costs
more » ... ment-related costs were managed, the main caregivers of 69 randomly selected persons who died at home, 74 who died in hospitals, and 11 who died in-transit were interviewed with a social autopsy questionnaire in 2014. Differences between groups were tested by χ 2 for significance at P <0.05. Those who died at home were sick for longer periods than those who died in hospitals or in-transit. During terminal illness, 33% of the home deaths were admitted, but discharged from hospitals prior to death for no chance of cure (52%) or financial constraints (17%). The reasons for 67% of home deaths not being admitted to a hospital were no chance of cure (28%), misjudgment of illness severity (21%), too short duration of illness (20%), or financial constraints (17%). For hospital deaths, final decisions were mostly made by family members (95%) as opposed to physicians (5%) for cure of serious illness (93%). Hospitals were chosen considering quality of care (59%), distance (36%), known doctors (35%) or referral (29%). After hospitals were chosen, 42% of hospitalizations were delayed due to lack of money (33%), misjudgment of illness severity (31%), or lack of someone to accompany the patient (31%). Payment of hospital costs included family savings (87%), borrowing from relatives (46%) or borrowing from moneylenders (6%). Healthcare decisions for terminally ill adults and elderly persons were influenced by the caregivers' assessment of chances of cure, judgment of illness severity and financial constraints. Improving understanding of illness severity and lowering direct out-of-pocket expenditures may help patients who have a reasonable chance of cure receive care in a hospital. Most of the literature on social autopsies of death or medical consultations prior to death of newborns and children focus on access to health services and the extent of service utilization as contributors to death. 1 , 2 Decisions to do with caring for the ill person shape how health services of varying types, qualities and costs are utilized. Making decisions for treatment is a process of assessing risk and chance of cure; knowledge and weighing up of multiple options for treatment; and other aspects, including costs of medical care. 3 Therefore, decision-making is an integral part of a patient's healthcare-seeking behaviour and constitutes a key component of
doi:10.29392//001c.11973 fatcat:g5iyrqdgxfddljlurn6arosmbq