Parents who discover that their child has a terminal illness face a host of enormously difficult decisions. Many of these decisions concern medical treatment; many others relate to the impact that the diagnosis has on the family. But another important decision relates to the very fabric of the parent-child relationship: Should the child be told the truth about his or her condition? Although this question would never arise when a competent adult is diagnosed with a terminal illness – it would simply be assumed that they are entitled the truth – matters seem rather different when the individual involved is a child. This summer, with the assistance of Christina Coffin ’16, I began work on developing an ethical framework for dealing with this decision.
The origin of this project is perhaps an unexpected one: It grew directly out of a presentation that Christina gave in my Freshman Humanities Seminar last fall. In this class, “Life, Death, and Meaning,” students are required to give a final presentation on a topic of their own choosing related to the course material. Most years the topics hew pretty closely to the list of suggestions I distribute. But last fall, Christina had an innovative idea: She wanted to develop a presentation on children’s conceptions of death, and in particular, she wanted to focus on this question with respect to children diagnosed with terminal illnesses. Though her presentation was an excellent one, we were both surprised to discover a dearth of philosophical literature directly on this question. Although there have been various empirical studies of how children and their families cope with terminal illness, there has been remarkably little discussion of this general topic by philosophers. This omission is especially surprising given the moral dimensions of the decisions that must be made, and there are important issues here which are ripe for philosophical exploration. Moreover, these issues connect up in an obvious way with some of my own previous work – work that was supported in a previous summer by the Berger Institute – about the ethics of lying to children. Thus was this project born.
The centerpiece of the project involves fleshing out a notion of autonomy that can be appropriately applied to children. Though deceiving a terminally ill child about her condition is often undertaken with the best intentions – intentions, say, of protecting a child from a very difficult truth – I argue that such deception deprives her of her autonomy in such a way that it cannot be morally condoned. Rather, parents should adopt a context of “open awareness” in which they and the child can talk honestly with one another about the situation they are facing. Importantly, what’s required by “open awareness” in cases involving children is different from what’s required in cases involving adults. We must take into account, for example, the fact that children do not (and cannot be expected to) have a sophisticated understanding of the nature of death, and this may in turn limit the value of sharing certain sorts of information with children. We must also take into account the limitations of a child’s decision-making capacities. But the fact that we such limitations prevent us from being able to achieve the kind of openness with children that we can achieve with adults does not free us from an obligation to achieve the fullest degree of openness that we can.
My work this summer, and my continuing work on this topic, has been greatly enhanced by the research assistance provided by Christina – assistance that was made possible due to the generous funding by the Berger Institute. Christina has thus far conducted a comprehensive review of the philosophical literature on related topics such as medical decision-making, informed consent, and children’s rights (among others). Having reviewed countless articles, she then produced comprehensive outlines and notes on 15-20 of the most relevant ones. These outlines and notes have proved invaluable both for the direction of my own research efforts and for the development of my own argumentation. Upon its completion, the article will be submitted to a refereed philosophical journal.