An Impossible Dilemma: Choosing Treatment For A Sick Child (Part II)

An Impossible Dilemma. Mother with sick childPart Two of a two-part study examining the parent-physician relationship regarding treatment in cases of severely and critically ill children 

Part II

There have been few empirical studies conducted that look at disagreements between health care professionals and parents. One article examined the influence health care providers have on parents in these difficult decisions. The article looked at differences in preferences and the following quotation is contained in the author's thesis.



“In critical care situations involving newborns, parents often assume responsibility for making important life sustaining decisions, along with neonatologists. Obviously, the preferences of newborns are unknown, and it is assumed that parents will take the best interests of the infant and the family into consideration. But it is not clear whether parents are influenced by health care professionals, and if they are, to what extent those decisions are based on the preferences of the very individuals on who they rely for information and advice: neonatologists, neonatal nurses and their personal physicians. Thus, it is important to determine whether the preferences of medical personnel are similar to or differ systematically from patients who are extremely low-birth-weight (ELBW) infants or their parents and to measure the direction of these differences, if any”.


In this study, hypothetical fact situations were given to parents, health care providers and adolescents, one-half of whom had been ELBW infants. The participants were asked how they would rate the health-related quality of life for the hypothetical conditions of five children with varying degrees of disabilities. The authors found that the health care professionals and the parents viewed the mild to moderately disabled states similarly, but that parents were more accepting of the severely disabled health state than health care professionals. Furthermore, there was more of a consistency between adolescents and their parents for the severely disabled health state than between the adolescents and the health care professionals. The authors theorize that a health care professional’s clinical bias may affect that person’s decision making in terms of assessing the quality of life for others. They state: “This finding lends support to the concept that parents are the most appropriate agents when making decisions on behalf of their infants in the neonatal intensive care unit”


A second study looked at the concept that parents are the most appropriate agents when making decisions on behalf of their infants in the neonatal intensive care unit. This study looked directly at the role of parents in end-of-life decisions in neonatology and found that disagreement was most likely to occur in cases of severely ill infants who were expected to survive with a very poor quality of life. Treatment decisions involving major medical interventions versus comfort care caused the most frequent disputes between parents and physicians on the medical course to be followed. They found that:


“The opinion of parents about which course of action is in the best interest of their child is apparently accepted by doctors in case it [sic] entails continuation of treatment. This may be the case for infants without chances of survival, as well as infants who may survive with, according to the pediatricians, an extremely poor quality of life. However, pediatricians frequently feel discontented about the course followed afterward in such cases, especially about whether they sufficiently served the interests of the child. Acting in accordance with the principle of respecting the opinion of parents about which course of action is in the best interest of their child may occasionally collide with the medical motive of avoiding any pointless suffering of the infant”


This study identified the ethical dilemma that often presents in these situations as a conflict between the principle of non maleficence on the part of the physician, and the autonomy of the parents on behalf of the patient.


As indicated earlier, the resolution of the conflict between a parent and a physician can occur by approaching each case individually. In a study of parental roles in decision-making about paediatric cardiac transplantation, the author conducted a prospective ethnographic study of 24 parents of 15 children before their decision to accept or reject the transplant option for their children.


The author comments that the parents’ desire to be considered a ‘good parent’ for the ill child was one of the strongest variables in influencing their choice. Examples of ‘good parenting’ included advocacy, unconditional love, presence and sacrifice. The health care practitioner who acknowledges his or her own belief system and values about treatment options, and also expresses a genuine respect for the personal differences in beliefs and values of the parent, will greatly assist the parent in the agonizing treatment choice that must be made.


The types of decision-making for parental involvement in deciding for their critically ill child has been categorized as collaborative, passive and active. Most parents prefer collaborative decision-making (52%) followed by passive (34%). Should physicians be polled, it is likely that they too would prefer a collaborative effort in reaching a decision for treatment of a severely ill infant or child.


Although the presumption is that the parents are the ones to whom deference should be given when there is a disagreement concerning the treatment choice for an ill child, the health care professionals have an important role. The shared ethical dilemma facing the parents and the health care team must be resolved or the alternative is to seek the court’s intervention. As stated earlier, each ethical dilemma contains its own resolution. If the parties take the time to understand each others perspective as comprehensively as possible, then the balance of elements required to resolve the ethical uncertainty will emerge.


The last resort option of having a judge impose a treatment, is one neither side would choose, encouraging both sides to do whatever is necessary to agree upon what is best for the child under very difficult conditions.




1. Munson R. Intervention and Reflection: Basic Issues in Medical Ethics. 6th edn. Toronto: Nelson/Thompson Learning; 2000.


2. Roy DJ, Williams JR, Dickens BM. Bioethics in Canada. Toronto: Prentice Hall Canada Inc; 1994. p. 52.


3. Saigal S, Stoskopf BL, Feeny D, et al. Differences in preferences for neonatal outcomes among health care professionals, parents, and adolescents. JAMA. 1999;281:1991–7. [PubMed]


4. van der Heide A, van der Maas PJ, van der Wal G, Killee LAA, de Leeux R, Holl RA. The role of parents in end-of-life decisions in neonatology: Physicians’ views and practices. Pediatrics. 1998;101:413–8. [PubMed]


5. Higgins SS. Parental role in decision making about pediatric cardiac transplantation: Familial and ethical considerations. J Pediatr Nurs. 2001;16:332–7. [PubMed]


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