Neonatal intensive care units (NICUs) in different countries take different approaches to decisions about forgoing life sustaining treatment. These differences partly reflect decisions about resource allocation and the ways that babies’ lives are valued compared to the lives of older children or adults. The differences also reflect different philosophies about the appropriate ways to make end-of life decisions.
Lin and colleagues recently reviewed dozens of studies that described how babies die. They found that, in Western countries, most deaths followed the forgoing of life-sustaining treatment. In other regions of the world, life-sustaining treatment is rarely withheld or withdrawn. The authors speculate about the reasons for these differences but acknowledge the limitations of their review. They only analyzed articles published in English, and most of the studies were retrospective. Thus, they couldn’t say much about the reasons behind different approaches in Western and non-Western countries.
One view of these differences is that non-Western countries just lag behind. The Western approach, which generally requires careful consideration of prognosis for both survival and disability, and then a process of shared decision making between doctors and parents, has evolved over the last few decades. Even in the West, there are differences from one NICU to another, and from doctor to doctor, in the ways that these practices are used. but, overall, they have become the standard of care for decision making about treatment of critically ill babies. By this view, it is just a matter of time and education until other countries catch up to the West.
Another view is that the Western approach just one among many, that it isn’t and should not be considered universally applicable or preferable, and that it reflects the particular set of values that are common in countries that are individualistic, wealthy, and pluralistic. By this view, Western approaches neither can nor should replace those of countries with very different political, legal, cultural and religious traditions.
One recent study by Mariani and colleagues from Argentina directly addresses these issues. There, researchers found that only about one third of neonatal deaths were preceded by a decision to forgo life-sustaining treatment. They speculate that there is “withdrawal aversion” in Argentina (and, perhaps, in other non-Western countries) and offer reasons to explain why this phenomenon occurs. Good end-of life decisions, they say, must consider four factors: 1) the best interest of the patient; 2) the interests of the family; 3) the harm principle; and 4) distributive justice. The proper balance between these factors will vary, depending upon legal, political, religious, and cultural factors. For example, in India, the withdrawal of life-support was long considered a form of euthanasia and was technically illegal. That has changed recently, but in ambiguous ways. Such withdrawal is widely practiced, but it is recorded as being done “against medical advice.” In countries where Islam is the dominant religion, religious guidance on end-of-life ethics is complex and leads to practices that are quite different than those in the West.
Because our world is so interconnected, we are more aware of religious and cultural differences than ever. Respect for such differences challenges the ways that we think about clinical ethics and decision making. To make the best decisions, we need to better understand and analyze different approaches to balancing the interests of babies, parents, families, and societies as we try to decide when it is better to try to save a baby and when it is better to forego life-sustaining treatment and, instead, provide high quality palliative care. Reports from other countries should not automatically aspire to Western standards. Instead, they should suggest reasons why other approaches, many of which are deeply embedded in long-standing cultural traditions, may be preferable. The best approach require a combination of different traditions, a combination that will only be possible if the different traditions are developed, analyzed, and compared to those of the West.
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