Abstract
The debate over the role of pediatric consent and dissent in health care has yet to be settled since the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research created the concept in the 1970s. The above-presented case study and analysis provided an emotional distance that is meant to provide an objective presentation that would not unduly influence the reader’s opinion. Presenting the case using comparative arguments derived from the principles approach, again, helps frame this emotional case in a rational manner that the reader can use as a basis to organize their own thoughts and feelings when potentially being faced with such an experience. As stated in the case study, overwhelmingly, health care providers who witness patient suffering or who are part of end-of-life care describe the process as torturous. How then, in this state of mind, are we to be objective and to be the best advocate for our patients when we are also dealing with our own emotional turmoil? Stepping back and looking at this case from a distance allows providers to insert themselves into the scenario and determine what interventions may have proven beneficial for the family at varying stages.
The main point of this analysis stems from the importance of the patient/client voice and the many opportunities to advocate for their informed decision-making. Within nursing specifically, the sustained contact with patients endows them with a novel perspective on this type of patient care. Clearly, there is a disconnect between what the parents understand to be true of Max’s condition and the medical reality of the situation. The emotional distress of the situation appears to cloud the judgment of the parents but also demonstrates that the health care team indulges them and forgets about the most important agent in the decision-making process, Max. Empowering those at the bedside to bring the reality of Max’s demise to the forefront could help the parents with their grieving process. For example, discussing daily laboratory values and what they mean as his body is declining and the additional interventions needed to keep his body viable; showing the parents the ventilator and demonstrating that Max is not able to initiate his own breathing; or that increases in Max’s heart rate can sometimes be attributed to pain, and so on. If these interventions may have been in place from the beginning of the PICU stay, perhaps the family could have come to terms with Max’s decision sooner in the process. The theoretical framework applied to this case serves as a starting point to guide an interdisciplinary team in discussion of ethical debates but does not suffice as a prescription for ameliorating the problems identified within the pediatric consent.
The case study and commentaries were co-ordinated by Martin Woods, Case Studies Editor of Nursing Ethics. If you would like to respond to this or submit a case study you can contact him at