OBJECTIVES: In many Euro-American societies, the ideal of patient and family involvement in clinical decision-making prevails. This ideal exists alongside the doctor’s obligation and responsibility to make decisions and to be accountable for them. In this article, we explore how medical staff navigate the tension between autonomy and authority when engaging life-and-death decision-making in a Danish NICU.
METHODS: The study rests on ethnographic fieldwork in a Danish NICU, involving participant observations in everyday care and decision-making work and semistructured interviews with staff and parents. All interviews were taped and transcribed. The empirical material was analyzed using thematic coding and validated in discussions with staff, parents, and social scientists.
RESULTS: Decisions are relational. Multiple moves, spaces, temporalities, and actors are involved in life-and-death decisions in the NICU. Therefore, the concept of medical decision-making fails to do justice to the complex efforts of moving infants in or out of life. Yet, many of these decision-making moments are staged, timed, and coordinated by medical staff. Therefore, we introduce an alternative vocabulary for talking about life-and-death decision-making in neonatology to help us attend to the moral stakes, the emotional tenor, and the fine-grained mechanisms of authority implied in such decisions around tiny infants.
CONCLUSIONS: We conceptualize decisions as an art of “careography.” Careography is the work of aligning care for the infant, care for the parents, care for staff, care for other infants, and care for society at large, in the process of deciding whether it is best to continue or withdraw life support.
Personally, I tend to focus on the relational. Of course, we need to know the medical facts, the statistics and so. But the decision is only five percent biomedical. Whether a family can live with a child with disabilities and what value they ascribe to such a life, no medical doctor knows any better than the family.
With these words, a Danish senior neonatologist reminds us of the relational nature of what we tend to term medical decision-making. In the field of neonatology, decisions must be made about whether to initiate, continue, or withdraw active treatment in infants born extremely prematurely. In this article, we will explore the process by which such decisions are made.
On the 1 hand, the neonatologist seems to stress the parental autonomy in such decision-making (no one knows better than the family). On the other hand, as we shall see in this article, the medical professional’s “focus on the relational” may not really be about parental autonomy. Instead, it may be more about care for and attention to the family situation as assessed by the doctor. As such, it might resemble what we sometimes deem “paternalism” or medical authority.
In this article, we begin from a social science curiosity as to what characterizes the 95% of the decision-making process that, in the neonatologist’s opinion, is not biomedical. We suggest that the answer lies in reducing or reinterpreting the classic tension between parental autonomy and professional authority in decision-making.
We recognize that choice and autonomy are considered core values in the realm of medical ethics.1 In many Euro-American societies, there is both an ethical and a political ideal of the involvement of patients and relatives in decision-making. This exists alongside the doctor’s legal obligation and ethical responsibility to make decisions and to be accountable for them. With this article, we ask how medical staff in a Danish NICU navigate this tension in a field where life-and-death decision-making may be only 5% biomedical. From what we learned, we propose an alternative vocabulary for talking about life-and-death decision-making in the field of neonatology. We hope this new vocabulary can help us attend to the moral experience, the emotional tenor, and the fine-grained mechanisms of authority implied in the process of life-and-death decisions for tiny infants. We suggest conceptualizing decisions as an art of “careography.”
METHODS: The study rests on ethnographic fieldwork in a Danish NICU, involving participant observations in everyday care and decision-making work and semistructured interviews with staff and parents. All interviews were taped and transcribed. The empirical material was analyzed using thematic coding and validated in discussions with staff, parents, and social scientists.
RESULTS: Decisions are relational. Multiple moves, spaces, temporalities, and actors are involved in life-and-death decisions in the NICU. Therefore, the concept of medical decision-making fails to do justice to the complex efforts of moving infants in or out of life. Yet, many of these decision-making moments are staged, timed, and coordinated by medical staff. Therefore, we introduce an alternative vocabulary for talking about life-and-death decision-making in neonatology to help us attend to the moral stakes, the emotional tenor, and the fine-grained mechanisms of authority implied in such decisions around tiny infants.
CONCLUSIONS: We conceptualize decisions as an art of “careography.” Careography is the work of aligning care for the infant, care for the parents, care for staff, care for other infants, and care for society at large, in the process of deciding whether it is best to continue or withdraw life support.
Personally, I tend to focus on the relational. Of course, we need to know the medical facts, the statistics and so. But the decision is only five percent biomedical. Whether a family can live with a child with disabilities and what value they ascribe to such a life, no medical doctor knows any better than the family.
With these words, a Danish senior neonatologist reminds us of the relational nature of what we tend to term medical decision-making. In the field of neonatology, decisions must be made about whether to initiate, continue, or withdraw active treatment in infants born extremely prematurely. In this article, we will explore the process by which such decisions are made.
On the 1 hand, the neonatologist seems to stress the parental autonomy in such decision-making (no one knows better than the family). On the other hand, as we shall see in this article, the medical professional’s “focus on the relational” may not really be about parental autonomy. Instead, it may be more about care for and attention to the family situation as assessed by the doctor. As such, it might resemble what we sometimes deem “paternalism” or medical authority.
In this article, we begin from a social science curiosity as to what characterizes the 95% of the decision-making process that, in the neonatologist’s opinion, is not biomedical. We suggest that the answer lies in reducing or reinterpreting the classic tension between parental autonomy and professional authority in decision-making.
We recognize that choice and autonomy are considered core values in the realm of medical ethics.1 In many Euro-American societies, there is both an ethical and a political ideal of the involvement of patients and relatives in decision-making. This exists alongside the doctor’s legal obligation and ethical responsibility to make decisions and to be accountable for them. With this article, we ask how medical staff in a Danish NICU navigate this tension in a field where life-and-death decision-making may be only 5% biomedical. From what we learned, we propose an alternative vocabulary for talking about life-and-death decision-making in the field of neonatology. We hope this new vocabulary can help us attend to the moral experience, the emotional tenor, and the fine-grained mechanisms of authority implied in the process of life-and-death decisions for tiny infants. We suggest conceptualizing decisions as an art of “careography.”
Authors
- Laura Emdal NavneMette N. Svendsen
About this publication
Published in
Pediatrics
