Guest Post: Saving the baby, or the family?

Authors: Kristine Husøy Onarheim, Ole Frithjof Norheim, Ingrid Miljeteig
Papers:  Newborn health benefits or financial risk protection? An ethical analysis of a real-life dilemma in setting without universal health coverage. 

Imagine a two-day-old baby falling sick with a severe infection. Then imagine that the parents have no savings available, and cannot afford the necessary medical care. The father complains: “If I sell our seeds to pay for treatment, how will I get food for her brothers and sister? Can they go to school?” What should the parents do? And should the health worker convince them to start treatment, when she knows how costs will lead the family into economic ruin? Tragic dilemmas such as this is the reality for families and health workers in settings where health care costs are largely covered by out-of-pocket payments. In cases like this, is it acceptable – for the family, for the health professional, for society – to limit treatment for the baby to protect the family against high costs?

Our article Newborn health benefits or financial risk protection? An ethical analysis of a real-life dilemma in a setting without universal health coverage examines this real-life dilemma faced by families and health workers in rural Ethiopia. Central to answering this question are concerns for newborn health benefits, priority to the worse-off, and protection against financial risk. The ethical dilemma is this: What to do when these concerns conflict? This is not only a challenging normative discussion, but a question at stake in priority setting at country level, among health district planners and health care workers, and in resource allocation at household level.

The article discusses the dilemma that plays out at micro-level, and examines the question with the family and health worker as a starting point. As three medical doctors, we are reluctant to deny health benefits to the patient in need, who can benefit from highly cost-effective care, and has a poor prognosis without treatment. At the same time, the empirical evidence on the damaging effects of high health care costs are convincing, and the risk of financial ruin is real for families paying out of pocket for health care. In our seven-step analysis, we lay out available evidence and discuss relevant ethical issues at stake. Though limiting treatment for the ill baby to avoid high health care costs may secure three months of daily expenses and thus implies a total wellbeing gain for the whole household, the baby has a high chance of dying and is clearly worse-off than the others. We conclude – when giving additional weight to the newborn who is worse-off than all the others in the family, that limiting treatment is not acceptable. However, our ethical analysis is far from the lived reality of patients, their families and health workers. We therefore accept that the family may come to a different conclusion based on their balancing of expected gains and burdens.

What we should not accept – and what we encourage ethicists and others to engage in – are the problematic consequences of accepting this dilemma in the first place. Every year 2.6 million babies die within the first 28 days of life, and ¾ of these deaths could been avoided by life-saving interventions. It is unacceptable that newborn babies born into poor families die from diseases that could easily have been avoided with cost-effective interventions. It is also unacceptable that a family is forced into financial ruin when seeking treatment for their baby. In families’ and health workers’ everyday decision making non-health factors such as financial risk play a crucial role, in particular for the health and welfare of the poor. We argue that the unfair choice between the baby and the family imposed on lower-level decision makers is caused by priorities and choices made at higher levels. We hope our paper, providing a glimpse into the harsh decision-making on the ground, can be valuable input as countries set out to realize universal health care. Priority setting towards universal health coverage demands challenging trade-offs between health benefits and financial risk; The consequences for families and health workers must be taken into account to secure fairer opportunities and outcomes, particularly for the worse-off.

Competing interests None declared.