Abstract
A child is admitted to the pediatric intensive care unit (PICU) 2 weeks after birth due to respiratory failure. He required an uneventful short stay in the neonatal intensive care unit (NICU) after birth before going home. Intubation is difficult and only marginally successful in securing ventilation and extracorporeal membrane oxygenation (ECMO) is initiated. Over the next few months, after ECMO has been weaned off, it is determined that the child has a severely compromised tracheal anatomy and is in need of tracheal reconstruction.
The reconstruction is done, but due to the anatomical structure of the child’s airway, it is not ideal. He required a tracheotomy that only achieves relative stability. This relative stability means that on a good day he is a normal happy child with Trisomy 21, sitting up laughing and playing, but any time the tracheotomy tube comes out he arrests nearly instantly often requiring cardiopulmonary resuscitation (CPR) and vasoactive medications.
Over time, almost 2 years, he is weaned off the ventilator and enjoys what would otherwise be a normal development. He requires repeated bronchoscopies and dilations, and the surgical group continues to attempt to reconstruct his trachea toward a permanent fix. Until that can be found, this child must remain in the PICU because of the alarming suddenness of decompensation when he decannulates, which requires emergent response. Over time, he becomes increasingly interactive and requires more “daycare” than intensive care.
However, in spite of being in the PICU, and though he has recovered from many decannulations leading to arrests and CPR in the past (no less than 10), he sustained a neurologic insult during a decannulation event. The nursing staff unanimously thought this to be an inevitable outcome. He was often paired with other patients because of his relative stability in spite of this feeling by staff that there would be an eventual incident that would cause irreversible harm; though even keeping a caregiver with him at all times would likely not have prevented the outcome.
Now this child has a severe neurological injury. He has been in the PICU for 3 years. His parents wish to continue treatment in hopes of restoring his function. He undergoes several more procedures for his airway. Meanwhile, his primary nursing team recommends withdrawal citing best interests of the child. Due to administrative issues, the hospital’s deliberative and decision-making policy for harmful or non-beneficial care is not initiated. Some of the staff believes this is because the arrest happened in the hospital and administration does not want the bad publicity.
There are myriad ethical questions brought forth by this case but one in particular is, prior to his neurologic devastation what do you do with a child like this in a PICU? Can an outcome be inevitable? Although it could be said that most patients in the PICU have potentiality, this child presents a different question due to his apparent lack of actual critical status, only his potential critical status.
Suzie Gannon, Shooting Star Chase, London and Surrey, UK
This case raises questions about quality of life and decisions about limiting treatment and who makes those decisions.
With increasing healthcare technology, we can sustain life where previously children would have died. However all treatment should be beneficial and the benefits must outweigh actual or potential harm, including physical, emotional, spiritual and social. Once treatment has begun, continuous review is essential and withdrawal of treatment that is no longer beneficial should be considered.
A team approach to decision making is important. This should include the multi-professional team and the parents in a supportive partnership. At no time should the parents be burdened with feeling that they are making a treatment decision, the ultimate responsibility for the treatment decision should be held by the senior clinician, responsible for the child’s care.
In answer to the question, what to do with a child like this on PICU? The primary concern should be for his quality of life. Perhaps it would be useful to reflect on earlier decisions that were made about keeping him on PICU once he was off the ventilator, as there was uncertainty about whether a full reconstruction of his airway was possible, maybe the focus could have been on quality rather than quantity of life. It seems that there was no inevitable outcome due to the uncertainty of successful treatment, therefore it is worth considering whether he could have been discharged and readmitted for planned tracheostomy tube changes, excepting that an emergency tube change could be fatal, but with the comfort that he was experiencing life outside of PICU. It is important that everyone concerned, especially parents understand that a decision to limit treatment, only applies to the specified treatment; it does not mean limiting care. Other treatments which are seen to be beneficial should, and will be continued. An early referral to a children’s palliative care team, is important, and can begin and continue along side active management 1 . This may have helped facilitate early and open discussions around exploring options for care and treatment.
It is important to consider the law in relation to the rights of the child 2 . If there is a difference of opinion between different health care professionals and/or parents, or if there is uncertainty about whether further treatment would be beneficial, it is imperative to seek a second opinion and it may be necessary to seek a legal opinion to ensure an unbiased approach is taken. Despite the fact that administration of the hospital’s deliberate and decision-making policy has not been followed, it is in the best interest of the child to reconsider this, as it would provide an objective, ethical process for decision making.
Support for the nursing staff is an important consideration. Opportunities for reflective practice are useful both individually and as a group. As the nursing team have been caring for him for 3 years, there needs to be an acknowledgment that they may be suffering some moral distress, and support from a trained counsellor should be encouraged.
Therefore I suggest approaching this with a best interest decision, by exploring possible outcomes and realistic treatment options as a team. Support for the family and all those involved is essential for good palliative care, which should be introduced at diagnosis of a life-threatening condition in children, alongside active management.
Response from the case study author
I would like to thank the respondent for their time in reviewing and commenting on this case.
Cases such as this embody a vast complexity. However, many of the ethical approaches are similar, as you eloquently detail. Though steeped in life and death situations as a job description it is hard to deny nurses feelings around inevitability of treatment failure despite desired goals by parents and physicians. This feeling in itself holds no moral or clinical weight but may signify the distribution of moral risk away from the decision makers and towards the caregivers; a moral hazard. In addition, the feelings of inevitability may be a signal that the overall treatment approaches or goals of care may be inconsistent with the best interests of the child despite the choices made by the decision makers.
In this case nurses felt that one of these episodes requiring resuscitation would fail and distress bore out from fear of being the one caring for the child when this happened; after all, one can only be deprived of oxygen so many times before neurologic effects take their toll. This is the inevitability present in this case, which I believe, signals the presence of moral hazard where the risk is diverted towards one party and away from the others. What to do with this is unclear, but recognition that nurses may be on the brunt end of moral hazard could be a first step towards a better understanding of these rare but complex situations.