Ingrid Miljeteig

Impact of ethics and economics on end-of-life decisions in an Indian neonatal unit.

OBJECTIVE: The aim of this article was to describe how providers in an Indian NICU reach life-or-death treatment decisions. METHODS: Qualitative in-depth interviews, field observations, and document analysis were conducted at an Indian nonprofit private tertiary institution that provided advanced neonatal care under conditions of resource scarcity. RESULTS: Compared with American and European units with similar technical capabilities, the unit studied maintained a much higher threshold for treatment initiation and continuation (range: 28–32 completed gestational weeks). We observed that complex, interrelated socioeconomic reasons influenced specific treatment decisions. Providers desired to protect families and avoid a broad range of perceived harms: they were reluctant to risk outcomes with chronic disability; they openly factored scarcity of institutional resources; they were sensitive to local, culturally entrenched intrafamilial dynamics; they placed higher regard for “precious” infants; and they felt relatively powerless to prevent gender discrimination. Formal or regulatory guidelines were either lacking or not controlling. CONCLUSIONS: In a tertiary-level academic Indian NICU, multiple factors external to predicted clinical survival of a preterm newborn influence treatment decisions. Providers adjust their decisions about withdrawing or withholding treatment on the basis of pragmatic considerations. Numerous issues related to resource scarcity are relevant, and providers prioritize outcomes that affect stakeholders other than the newborn. These findings may have implications for initiatives that seek to improve global neonatal health.

Physicians' use of guidelines and attitudes to withholding and withdrawing treatment for extremely premature neonates in Norway

Objectives: To examine if explicit written guidelines for withholding and withdrawing treatment for extremely premature infants exist and are used in obstetric and paediatric units in Norway, and to explore changes in attitudes and which factors are considered important when making decisions regarding life support.

End-of-life decisions as bedside rationing. An ethical analysis of life support restrictions in an Indian neonatal unit

Introduction Hundreds of thousands of premature neonates born in low-income countries are implicitly denied treatment each year. Studies from India show that treatment is rationed even for neonates born at 32 gestational age weeks (GAW), and multiple external factors influence treatment decisions. Is withholding of life-saving treatment for children born between 28 and 32 GAW acceptable from an ethical perspective? Method A seven-step impartial ethical analysis, including outcome analysis of four accepted priority criteria: severity of disease, treatment effect, cost effectiveness and evidence for neonates born at 28 and 32 GAW. Results The ethical analysis sketches out two possibilities: (a) It is not ethically permissible to limit treatment to neonates below 32 GAW when assigning high weight to health maximisation and overall health equality. Neonates below 32 GAW score high on severity of disease and efficiency and cost-effectiveness of treatment if one gives full weight to early years of a newborn life. It is in the childs best interest to be treated. (b) It can be considered ethically permissible if high weight is assigned to reducing inequality of welfare and maximising overall welfare and/or not granting full weight to early years of newborns is considered acceptable. From an equity-motivated health and welfare perspective, we would not accept (b), as it relies on accepting the lack of proper welfare policies for the poor and disabled in India. Conclusion Explicit priority processes in India for financing neonatal care are needed. If premature neonates are perceived as worth less than other patient groups, the reasons should be explored among a broad range of stakeholders.

Prioritizing child health interventions in Ethiopia: modeling impact on child mortality, life expectancy and inequality in age at death.

Background The fourth Millennium Development Goal calls for a two-thirds reduction in under-5 mortality between 1990 and 2015. Under-5 mortality rate is declining, but many countries are still far from achieving the goal. Effective child health interventions that could reduce child mortality exist, but national decision-makers lack contextual information for priority setting in their respective resource-constrained settings. We estimate the potential health impact of increasing coverage of 14 selected health interventions on child mortality in Ethiopia (2011–2015). We also explore the impact on life expectancy and inequality in the age of death (Ginihealth). Methods and Findings We used the Lives Saved Tool to estimate potential impact of scaling-up 14 health interventions in Ethiopia (2011–2015). Interventions are scaled-up to 1) government target levels, 2) 90% coverage and 3) 90% coverage of the five interventions with the highest impact. Under-5 mortality rate, neonatal mortality rate and deaths averted are primary outcome measures. We used modified life tables to estimate impact on life expectancy at birth and inequality in the age of death (Ginihealth). Under-5 mortality rate declines from 101.0 in 2011 to 68.8, 42.1 and 56.7 per 1000 live births under these three scenarios. Prioritizing child health would also increase life expectancy at birth from expected 60.5 years in 2015 to 62.5, 64.2 and 63.4 years and reduce inequality in age of death (Ginihealth) substantially from 0.24 to 0.21, 0.18 and 0.19. Conclusions The Millennium Development Goal for child health is reachable in Ethiopia. Prioritizing child health would also increase total life expectancy at birth and reduce inequality in age of death substantially (Ginihealth).

Should patients who use illicit drugs be offered a second heart-valve replacement?

Intravenous drug users (IVDUs) have an elevated risk of contracting infectious endocarditis. Most of them have good effect from medical treatment, but some will need valve replacement. Until a few years ago, our hospital withheld valve surgery if patients with intravenous drug dependency and infectious endocarditis came to need a second valve replacement. However, there are no consensus guidelines for treatment of this group of patients, and a dearth of data on the effects and benefits of interventions. Using a method of ethical analysis, we here discuss whether it is appropriate to offer valve surgery to drug users for a second time.

HIV priorities and health distributions in a rural region in Tanzania: a qualitative study

Background International and national agencies play a major role in setting HIV care-and-treatment priorities in low-income-countries. Little is known about priority setting at lower health-system levels. The objective of this article is to explore experiences of HIV priority decisions, at what levels these decisions are made and how they might influence the distribution of health benefits in a high-endemic region in Tanzania. Methods This is a qualitative study using observations, key documents and semistructured focus-group and individual interviews (43) with health workers, patients and administrators at one regional and one district hospital. The analysis was based on an editing analysis style. Results Health workers did not perceive themselves as bedside rationing agents and they reported following national recommendations and felt they have little impact on important priority decisions. Health benefit distributions were largely determined by priority decisions made at a national level. External factors, such as eligibility criteria, inadequate funding and barriers to access seemed to play a major role in the actual distribution of health services and benefits in the region. Patient groups who were actually given high priority were the sickest patients, those living near a facility and those who could afford long journeys and frequent visits. Low-priority groups were those experiencing other co-morbidities or treatment failure, children, asymptomatic patients and the poorest. Conclusions/significance The interaction of priority setting across health-system levels and their impact on distribution of health outcomes in the population has been underestimated. The distributional pattern of health outcomes calls for further normative assessment.

Ethical Challenges in the Provision of Dialysis in Resource-Constrained Environments

The number of patients requiring dialysis by 2030 is projected to double worldwide, with the largest increase expected in low- and middle-income countries (LMICs). Dialysis is seldom considered a high priority by health care funders, consequently, few LMICs develop policies regarding dialysis allocation. Dialysis facilities may exist, but access remains highly inequitable in LMICs. High out-of-pocket payments make dialysis unsustainable and plunge many families into poverty. Patients, families, and clinicians suffer significant emotional and moral distress from daily life-and-death decisions imposed by dialysis. The health systems obligation to provide financial risk protection is an important component of global and national strategies to achieve universal health coverage. An ethical imperative therefore exists to develop transparent dialysis priority-setting guidelines to facilitate public understanding and acceptance of the realistic limits within the health system, and facilitate fair allocation of scarce resources. In this article, we present ethical challenges faced by patients, families, clinicians, and policy makers where dialysis is not universally accessible and discuss the potential ethical consequences of various dialysis allocation strategies. Finally, we suggest an ethical framework for use in policy development for priority setting of dialysis care. The accountability for reasonableness framework is proposed as a procedurally fair decision-making, priority-setting process.

Towards universal health coverage for reproductive health services in Ethiopia: two policy recommendations

Reproductive health services are crucial for maternal and child health, but universal health coverage is still not within reach in most societies. Ethiopia’s goal of universal health coverage promises access to all necessary services for everyone while providing protection against financial risk. When moving towards universal health coverage, health plans and policies require contextualized knowledge about baseline indicators and their distributions. To understand more about the factors that explain coverage, we study the relationship between socioeconomic and geographic factors and the use of reproductive health services in Ethiopia, and further explore inequalities in reproductive health coverage. Based on these findings, we discuss the normative implications of these findings for health policy. Using population-level data from the Ethiopian Demographic and Health Survey (2011) in a multivariate logistic model, we find that family planning and use of antenatal care are associated with higher wealth, higher education and being employed. Skilled attendance at birth is associated with higher wealth, higher education, and urban location. There is large variation between Addis Ababa (the capital) and other administrative regions. Concentration indices show substantial inequalities in the use of reproductive health services. Decomposition of the concentration indices indicates that difference in wealth is the most important explanatory factor for inequality in reproductive health coverage, but other factors, such as urban setting and previous health care use, are also associated with inequalities. When aiming for universal health coverage, this study shows that different socioeconomic factors as well as health-sector factors should be addressed. Our study re-confirms the importance of a broader approach to reproductive health, and in particular the importance of inequality in wealth and geography. Poor, non-educated, non-employed women in rural areas are multidimensionally worse off. The needs of these women should be addressed through elimination of out-of-pocket costs and revision of the formula for resource allocation between regions as Ethiopia moves towards universal health coverage.

Ethics capacity building in low-income countries: Ethiopia as a case study

Ethical dilemmas are part of everyday clinical practice, and doctors worldwide must make value-based decisions. In low-income countries with very limited resources, healthcare personnel and policymakers face ethical challenges. Ethiopian policies aim to improve the ethical decision-making competence of healthcare personnel. But what are the dilemmas experienced by Ethiopian doctors and how can training and professional development equip them to deal with the ethical challenges they face? In this text, we illustrate ethical challenges that doctors experience in a resource-constrained health and welfare system. Our discussion is based upon our own empirical data from Ethiopia, our experience as healthcare workers in low-income countries, as well as relevant literature. We will describe the challenges and opportunities that lie in education, guidance and facilitation of ethical decision-making in a low-income country like Ethiopia.

Newborn health benefits or financial risk protection? An ethical analysis of a real-life dilemma in a setting without universal health coverage

Introduction High healthcare costs make illness precarious for both patients and their families’ economic situation. Despite the recent focus on the interconnection between health and financial risk at the systemic level, the ethical conflict between concerns for potential health benefits and financial risk protection at the household level in a low-income setting is less understood. Methods Using a seven-step ethical analysis, we examine a real-life dilemma faced by families and health workers at the micro level in Ethiopia and analyse the acceptability of limiting treatment for an ill newborn to protect against financial risk. We assess available evidence and ethical issues at stake and discuss the dilemma with respect to three priority setting criteria: health maximisation, priority to the worse-off and financial risk protection. Results Giving priority to health maximisation and extra priority to the worse-off suggests, in this particular case, that limiting treatment is not acceptable even if the total well-being gain from reduced financial risk is taken into account. Our conclusion depends on the facts of the case and the relative weight assigned to these criteria. However, there are problematic aspects with the premise of this dilemma. The most affected parties—the newborn, family members and health worker—cannot make free choices about whether to limit treatment or not, and we thereby accept deprivations of people’s substantive freedoms. Conclusion In settings where healthcare is financed largely out-of-pocket, families and health workers face tragic trade-offs. As countries move towards universal health coverage, financial risk protection for high-priority services is necessary to promote fairness, improve health and reduce poverty.