Rashad Rehman, Nipa Chauhan and Rebecca Greenberg argue that beneficent paternalism should be integrated into shared decision-making in the NICU to maximize the patient’s best interests.
Shared decision-making is a central tenet of paediatric healthcare. In neonatology specifically, it is the preeminent paradigm for decision-making as neonates will never be in a position to make decisions for themselves. Within this paradigm, the assumption is often that the burden of responsibility should be shared; however, this lacks an acknowledgement that both the contributions to as well as the consequences of decision-making are different for physicians and parents. In keeping with Ontario’s Health Care Consent Act (HCCA), which delineates specific roles for clinicians and decision-makers, shared decision-making should not always require equal contributions from stakeholders. Physicians provide medical expertise, and parents contribute their own values and goals. The dilemma in shared decision-making is that it does not recognize the inherent asymmetry of information – consequently asking parents to act like physicians and evaluate highly technical data. Consequently, shared decision-making inadvertently obscures the roles of the decision-makers, does not align with the legal requirements from the HCCA, places an unfair burden onto parents, and may not maximize the neonate’s best interests.
Some healthcare providers in paediatric contexts have recognized that shared decision-making is not always appropriate in its traditional application: for instance, when the path forward is clear and only one medical recommendation is justified. It has been argued that in the case of terminally ill children, when CPR is not medically appropriate, parents should not be burdened to consent to no CPR. Instead, physicians should shoulder the responsibility of providing explicit recommendations in alignment with the best interests of the child, and rather than ask for consent for a DNR, to instead inform parents why CPR is not being offered. This approach, directed by the clinical team, can remove the emotional burden on parents while maximizing the child’s best interests.
The model of shared decision-making often lacks an acknowledgment that decision-making for each case must be matched to parents’ needs and the patient’s clinical context. In an effort to preserve parental autonomy and avoid paternalism, physicians sometimes circumvent making clear treatment proposals and instead ask families what they want done. This places a heavy burden on parents to choose and can lead to situations where the best interests of the child are compromised. Further, in some instances, it translates into shirking of professional roles and responsibilities necessary to facilitate informed consent.
To prevent harm to parents by way of burden and maximize best interests of children, we propose the use of moderate paternalism in a sub-set of cases involved in NICU care. Specifically, we argue for “beneficent paternalism” where clinicians should be beneficent paternalist by only offering treatment choices that are medically appropriate and also match the values and goals of the patient and family. This view is “paternalist” because it suggests limiting the options to what is best in a specific case rather than presenting all possible options. If parents wish for “everything to be done” for their neonate, it is important to understand what future the parents are imagining when making this directive. If the future they wish for their child is not clinically possible, making treatment directives that extend suffering in an effort to strive for this clinically impossible dream is not in the best interest of the patient. It may be more helpful to map parental values and goals onto what is clinically possible first, in an effort to avoid the false hope resulting from the request to “do everything”. However, there are necessary criteria for adjudicating when beneficent paternalism would be appropriate, since our proposal is that it would only work in a sub-set of cases.
Here are six relevant clinical case considerations, that when present, bolster the appropriateness of applying beneficent paternalism:
- The values and wishes of the family are known and align with the medical recommendation
- The parents show a desire to absolve themselves of responsibility and to seek guidance
- Alternative pathways are likely to cause significant harm to the patient
- The treatment proposed is highly efficacious and/or only one treatment option is appropriate
- The physician has good awareness of the family’s desire, or lack thereof, to participate in decision-making
- There is consensus among the medical team
The zone of parental discretion is not all-encompassing. The fluctuating balance between parents and clinical teams is the result of shared decision-making done well, rather than expecting parents to always share responsibility in treatment planning. This approach can be in the best interests of all stakeholders involved (the parents, the neonate, and the clinical team). When parents are inappropriately asked to make decisions where there is medical clarity, the patient’s best interests are not prioritized and parents can be harmed by the decision-making burden. Beneficent paternalism mends this problem, avoiding the pitfalls of shared decision-making as it is currently practiced. .
Rashad Rehman is a PhD candidate in the Department of Philosophy and Joint Centre for Bioethics at the University of Toronto. He is also a Graduate Fellow at Schwartz Reisman Institute.
Rebecca Greenberg is the Senior Bioethicist at Sinai Health in Toronto and an Associate Professor in the Department of Paediatrics, Faculty of Medicine, at the University of Toronto.
Acknowledgment: The authors would like to thank Dr. Alessia Gallipoli for her feedback and input on the manuscript.