The Child in Status Epilepticus Dilemma

The article discusses a case of a child in status epilepticus where the mother refuses the administration of diazepam.

The following case is based on a real-life situation, highlighting the difficulties in applying ethical decisions in the prehospital critical care setting. While the case is based from the United Kingdom, it ought to be applicable to similar EMS systems and settings. Kassirer et al. highlight that discussing real-world scenarios helps exemplify reasoning (both good and bad) that the reader ought to relate to within similar and future contexts.1

During the start of a night shift, an ambulance crew consisting of a paramedic and an assistant (EMT-B) are dispatched to a 10-year-old child in status epilepticus (SE). The patient has a known history of frequently experiencing SE, resulting in a specific treatment protocol of phenobarbitone first, followed by diazepam. On arrival, the child is supine with a continuous clonic-like seizure and is on oxygen being ventilated via bag valve mask (BVM), with no airway device by the mother. The duration of the episode is ongoing at 10 minutes, and the phenobarbitone has already been administered. It quickly transpires that the mother is a physician (rheumatologist) and is refusing the administration of diazepam to the child with the belief that this is typically done at hospital by an anaesthetist. Her rationale is due to the child having a high sensitivity to diazepam and history of respiratory arrest. The nearest hospital is 20 minutes away.

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Since the child is clearly in SE, the dilemma is:

Should the diazepam be given? Note that in the UK, the primary medication is rectal or intravenous diazepam in the absence of buccal midazolam, whereas in other EMS systems (notably North America), this may be intramuscular midazolam.

There are several factors that makes this situation a dilemma:

  1. SE is a time-critical situation, if left untreated and prolonged, there is risk of further complications and irreversible neurological injury.
  2. The mother is refusing an available treatment, based on experience of her child in SE. She is also a physician.
  3. There is risk that the child will go into respiratory arrest with treatment.
  4. There is a clear conflict between clinician duty towards the child’s interests versus respecting the mother’s wishes.
  5. The SE treatment ladder has already been escalated to phenobarbitone: For a very brief overview of the SE treatment ladder, see Figure 1.

Fortunately, there are tools within the paramedic ethics playbook to help untangle this dilemma. Primarily, this is weighing the four principles of autonomy (self-determination), beneficence (best interests), non-maleficence (harm and risk), and justice (fairness and equality) by Beauchamp and Childress.2

Since the child is in an unresponsive state, autonomy is typically deferred to the parent, in this instance the mother. Given that there is no reason to suspect that the relationship with her child is a non-intimate one, there has to be an assumption that her obligation to her child will be one that serves to protect the child’s interests.3,4 This is further reinforced by her extensive knowledge of her child’s condition, being a physician and having past experience of managing SE. Arguably, this deepened understanding may also have a counter effect of assuming the worst, pre-emptively reaching a foregone conclusion that respiratory depression will become unmanageable within the prehospital setting. 

Figure 1: SE Treatment Ladder Overview

There is also an emotional component; her attachment to her child will have shrouded her ability to make an impartial decision. However, is that to say that in all life-threatening emergencies the parent should automatically be excluded from partaking in any decision? The answer here is no, and we know from previous studies that parents want to be involved, feel competent, empowered and respected about deciding for their child’s care.5,6,7 Indeed, as Thinnes et al. noted, most parents trust the expertise of the EMS provider to offer appropriate advice.5

The current scenario however, illustrates a situation where the mother does not want advice, possibly due to being a physician and having previous experience, and because she already knows that SE will result in rapid conveyance to a specialist pediatric team. Nevertheless, as a physician, she would also be aware that ethical guidelines and regulators emphasise that healthcare professionals should not treat friends and family, as this can introduce bias including favouritism and an increased scope for error.

Key point #1: The paramedic is the senior clinician on scene.

Despite the mother being a physician, prehospital or emergency medicine is not her specialty and she is in a highly emotive situation. This is illustrated by the fact that she is unnecessarily ventilating her child, who is making sufficient respiratory effort and actively resisting the BVM. The senior clinician is therefore the one with the most appropriate knowledge and skillset to the situation. In this instance, the paramedic.

However, paramedics sometimes feel that the profession lacks respect and trust from other medical professions.8 Physicians in particular may explicitly or inadvertently hold an authority over other healthcare professionals that can result in an authority bias.9 In this instance, the combination of the mother’s authority as both parent and physician, and being resistant to relinquishing control to the EMS team resulted in a human factor with near disastrous consequence; the EMS team in an attempt to respect the mother’s wishes, continued ventilations which later caused the child to vomit, soiling their airway. Prior to hospital arrival, the airway was now a difficult one with possible aspiration. Such a harm may have been avoided had the paramedic assumed responsibility (either by adopting an autocratic, diplomatic or empowering stance).

Key point #2: A paramedic can manage respiratory depression.

We know that in SE, timing and terminating the seizure is everything.10 By the time the child arrives at the hospital, the episode will have been 30 minutes, and transitioning into late stage SE. The next stage of this child’s treatment plan is diazepam. Therefore, from a best interests point of view, both mother and paramedic want the same outcome: to reduce the seizure and have diazepam administered. The conflict is to whom administers the drug.

From a justice lens, there is the additional argument that resources are limited in the prehospital setting to manage a child in SE, typically requiring a multi-disciplinary team. In contrast, contemporary ambulances have sufficient life-support equipment to maintain care toward any onward receiving facility. There is also the (albeit) small chance that the on-call anaesthetist is temporarily unavailable at the receiving hospital. Further, if the mainstay treatment is to administer diazepam to all patients in SE, it could be considered unfair to unduly delay a care plan that others would be expected to receive. Often, this is offset against autonomy and the individual’s freedom to choose a treatment, weighing up risks versus benefits. This leads on to the next key point:

Key point #3: The child is the patient.

According to the United Nations Convention on Rights of the Child, the child has a right to i) the best possible health, ii) actions that affect children must be in their best interests, iii) have a right to life and survival, iv) right to express views, and v) right to parental and state support.11 Due to the child being in life-threatening SE and unable to express their view, an argument could be made that best interests outweighs parental autonomy in favor of supporting the child’s best possible health and right to survive. Since in retrospect, respecting parental/physician autonomy and authority led to an increase risk in harm (the soiled airway and prolonged seizure time), the alternative of actively pursuing the treatment pathway of administering the diazepam may have resulted in better care to the child.

A way of proving if administering diazepam would have been a better approach, is to apply Iserson’s Rapid Approach to Ethical Problems (see Figure 2).12 To which, at the time of the situation, there was no rule, however delay as we now know put risk to the child. The Impartiality test (do others as you would have done unto you), Universalizability test (is the action relevant to similar circumstances), and Interpersonal Justifiability test (evidence the decision) however affirm that administering diazepam is not only an evidence-based decision that is implemented into pre-hospital guidelines, but that it is an action that is relevant to all those that suffer with SE.

Figure 2: Iserson’s Rapid Approach to Ethical Problems – 12p45

Lessons Learned

Measuring consequence in healthcare is notoriously difficult, where typically we rely on experience and existing evidence to predict what might happen. It is not until after the fact that we can then understand if our initial decisions have had a good outcome. In this scenario, was it better to respect that the mother has control, seek an alternative least restrictive option (in the form of rapid conveyance to the hospital), or disregard the mother and accept the risk of clinician-parent relationship breakdown, possible complaint and litigation, and the child possibly entering respiratory arrest?

What actually happened was the EMS crew decided to:

  • Respect parental wishes and not administer diazepam.
  • Provided basic ABCs with oxygen and ventilation.
  • Rapid conveyance to the nearest hospital requesting an anaesthetist.

The consequences of which resulted in:

  • Unnecessary ventilation resulting in a soiled airway and possible aspiration.
  • Care that attempted to balance parental preference versus optimal pre-hospital pediatric care resulting in a prolonged seizure time.

On reflection, it seems that administering diazepam may have resulted in a better outcome. The reasons for this are:

  1. Manging SE and respiratory depression is within a paramedic’s scope of practice, particularly in the prehospital setting.
  2. The evidence for timely administration of diazepam and attempting to terminate the seizure outweighs the foreseen and unforeseen risks in the pre-hospital setting, due to reason i), and is therefore ethically justified within the best interests of the child.

Therefore, what ought to have happened is:

  • The paramedic reassures the mother that the benefit of rapidly administering diazepam outweighs any delay in treatment.
  • Explain that should respiratory arrest occur, it is well within a paramedic’s scope of practice to manage the airway, minimising this risk.
  • Prepare an advanced airway and importantly, consider whether ventilations are necessary at present.
  • Administer diazepam and continue to monitor.
  • Provide rapid conveyance to the nearest hospital requesting an anaesthetist.

In doing so, places the focus of care in the interests of the child, enabling the paramedic to perform optimally and ethically within their field of expertise.

References

  1. Kassirer J, Wong J, and Kopelman R. Learning Clinical Reasoning. Baltimore: Lippincott Williams & Wilkins; 2010.
  2. Childress JF, Beauchamp TL. Principles of biomedical ethics. New York: Oxford University Press; 2020.
  3. Ross LF. Children, families, and health care decision making. Oxford University Press; 1998.
  4. Buchanan AE, Brock DW. Deciding for others: the ethics of surrogate decision making. Cambridge University Press; 1990.
  5. Thinnes R, Swanson MB, Wetjen K, Harland KK, Mohr NM. Preferences for emergency medical service transport after childhood injury: An emergency department-based multi-methods study. Injury. 2020 May 13.
  6. Aarthun A, Øymar KA, Akerjordet K. Parental involvement in decision‐making about their child’s health care at the hospital. Nursing Open. 2019 Jan;6(1):50-8.
  7. Carnevale FA, Canoui P, Cremer R, Farrell C, Doussau A, Seguin MJ, Hubert P, Leclerc F, Lacroix J. Parental involvement in treatment decisions regarding their critically ill child: a comparative study of France and Quebec. Pediatric Critical Care Medicine. 2007 Jul 1;8(4):337-42.
  8. Sonnenwald, D.H., Söderholm, H.M., Welch, G.F., Cairns, B.A., Manning, J.E. and Fuchs, H., 2014. Illuminating Collaboration in Emergency Helath Care Situations: Paramedic-Physician Collaboration and 3D Telepresence Technology. Information Research19(2).
  9. Szafran, O., Torti, J.M., Kennett, S.L. and Bell, N.R., 2018. Family physicians’ perspectives on interprofessional teamwork: Findings from a qualitative study. Journal of interprofessional care32(2), pp.169-177.
  10. Kumar S. Prehospital management of status epilepticus. In Radhakrishnan A. (ed) Status Epilepticus: practical guidelines in management. London: Jaypee Brothers Medical; 2017.
  11. UNICEF. The United Nations Convention on the Rights of the Child. London: UNICEF UK; 1989.
  12. Iserson KV, Sanders AB, Mathieu D. Ethics in emergency medicine. Galen Pr Ltd; 1995.

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