End-of-life priorities in complex settings - An ethical analysis of decisions in Indian neonatal units
Year: 2010
Type: dissertation
Abstract: Background: In India, 1.2 million of the 26 million infants born annually die during the neonatal period. The National Neonatal Forum in India estimated that the need for intensive care beds in India is 72,000, but only 2,000 are currently in place. There is a lack of knowledge about how providers approach life-saving or life-ending decisions for potentially treatable newborns under conditions of obvious resource scarcity, and how socioeconomic factors affect these decisions. There are few studies exploring how different principles derived from general theories of distributive justice might be in conflict when applied to such decisions. The aim of this thesis is to describe and analyse end-of-life decisions for newborns in a context of resource constraints and non-Western culture. Method: Doctors’ experiences of ethical dilemmas, limits for treatment and reasons used in end-of-life decisions are explored by qualitative methods including in-depth interviews, observation and register data collected through several fieldworks in different neonatal units in India between 2000–2007. The analysis of the ethical acceptability of withholding life-saving treatment for children born between weeks 28 and 32 gestational age weeks (GAW) is done through a seven-step framework for impartial analysis of priority-setting dilemmas. Major effort is taken to analyse the outcome for neonates born between 28 and 32 GAW, by analysing their condition according to four accepted priority criteria: severity of disease, treatment effect, cost effectiveness and evidence of the former three. Results: We found that all physicians experienced end-of-life decisions as the main ethical dilemma in their job. The providers operate under conditions of severe resource scarcity, and they employ a variety of non-standardized criteria for choosing which neonates will or will not receive treatment. Multiple outcomes external to the clinical welfare of the newborn influence our informants’ decisions about treatment after preterm birth, and they had to adjust the gestational age limit for treatment thereafter. In these situations, they felt personally responsible for how their decisions influenced the family’s economy and future, other children’s access to equipment in the unit, and the use of resources in an underprivileged population. In one unit, the limits set for treatment of premature neonates were no treatment to neonates <28 GAW, and treatment to all >32 GAW. These limits are almost inevitable and understandable due to the current conditions in India. However, in our ethical analysis, we question whether it is ethically ever permissible to limit treatment to neonates below 32 and above 28 GAW if we apply the two principles of health maximisation and overall health equality. Neonates score high on severity of disease, efficiency and cost effectiveness of treatment if one gives full weight to life years gained for a newborn. It is in the child’s best interest to be treated. Lack of proper welfare policies for the poor and disabled in India are the main reasons for withholding treatment. This is not acceptable from a distribution-sensitive health- and welfare perspective. Conclusion: End-of-life decisions for premature and sick neonates are experienced as difficult ethical dilemmas in neonatal units in India as documented in other countries, but our empirical study and ethical analysis showed that the limits and reasons behind decisions to withhold or withdraw treatment of premature neonates are context specific and highly dependent on cultural and socioeconomic factors. We found that in the settings studied, the dilemmas of setting priorities are more pressing than ‘futility’-decisions, making end-of-life decisions a form of bedside rationing. We cannot generalise our results to all neonatal units in India or claim that our analysis captures all relevant aspects of such bedside rationing. The study was neither designed to provide results that can guide policy makers or clinicians in India on where to set fair limits. We can only hope that our efforts to make explicit choices made in some influential institutions in India, and describing and analysing the dilemmas, will be relevant to developing more informed decisions and priority setting processes. There is an implicit denial of treatment for hundreds of thousands of premature neonates born in low-income countries, as others’ needs are prioritised more. The limited hospital care available for premature neonates in the low-income countries presents a major and unmet challenge in health care prioritisation schemes. If premature neonates are perceived as of less worth than older persons or other patient groups, this should be explicitly discussed and the reasons for supporting such views should be explored among a broad range of stakeholders. We hope our preliminary descriptions and analysis will inspire further research that will contribute to securing the rights of newborn and children born into the most disadvantaged circumstances, and to meet the real challenges that lie ahead if we truly intend to meet the MDG goals of reducing childhood, and specifically, newborn, mortality by two-thirds before 2015.
Author: Ingrid Miljeteig
Language: English
Field: Medicine
Domain: Health Sciences
Open Access status: green
OpenAlex ID: W633316664