Send letter to journal:
Re: Analgesia, sedation and neuromuscular blockers in neonatal end-of-life care

Verhagen et al (1) recently reported practice patterns from Dutch NICU’s for the use of analgesia, sedation and neuromuscular blockers (NMBs) in neonatal end-of-life (EOL) care. The authors are to be commended for their efforts in documenting their practice. Their data show that analgesia and sedation was provided to 292/340 newborns following the decision to withdraw or withhold active treatment. Of particular interest to me was the fact that this type of medication was increased in 94 newborns whose death was imminent, and that NMBs were administered in 16% of deaths. This makes me wonder whose pain and suffering our Dutch colleagues were alleviating.

I think few neonatologists will disagree with the sentiment that babies who are destined to die should not suffer. Therefore, in infants who are already receiving analgesia and sedation as part of their medical treatment, it seems eminently reasonable to continue such treatment to avoid discomfort due to withdrawal symptoms . Also, if infants during this process display signs of pain or discomfort, increasing analgesia is the humane thing to do.

However, when I look at the data from Verhagen et al’s study, I find myself wondering whether Dutch infants are “a different breed” compared to Norwegian or U.S. babies. In my own experience, which includes >30 years in pediatrics and >20 years in full-time neonatology both in Norway and in the USA, it is quite rare for dying infants to exhibit signs of pain during the process of death. Parents are often worried that this may happen, and I always assure them that analgesia will be instantly available and given without hesitation should the baby show signs of discomfort. The nurses I have worked with over the years have without exception been very attentive to any signs of pain, and absolutely unwilling to accept suffering without relief. In spite of this, the need for additional analgesia is rare. Are Dutch infants different, or is this apparent difference in the use of analgesia due to philosophical differences with our Dutch colleagues as regards death and dying?

The use of NMBs documented by Verhagen et al suggests that perhaps the latter may be true. NMBs are devoid of any analgetic or sedative properties, therefore giving NMBs to a dying baby will not alleviate any pain, if indeed the infant should be suffering. Quite the contrary, the NMBs will effectively prevent the infant from signaling discomfort. NMBs are apparently used by our Dutch colleagues to prevent or stop gasping. I am unaware of any published evidence that terminal gasping in a dying person is associated with pain. As respiration and circulation fail, increasing respiratory acidosis will send the baby into CO2 anesthesia. Gasping represents the last valiant efforts of the respiratory center to do its job, but by this time the baby is deeply unconscious and very unlikely to be suffering. NMBs given at this time may relieve the discomfort of those watching, but I seriously question the wisdom of this approach.

In my experience, honest and compassionate communication with the parents ahead of withdrawal of life support is a sine qua non for good EOL care in infants. We carefully explain to the parents about terminal gasping and what it means, as well as other phenomena that may cause concern, such as the fact that the heart will continue to beat for quite a while after the baby has stopped breathing. The infants are typically swaddled in their blankets and caressed, rocked, and cradled by their parents. At least one member of the staff will be present at all times, unless the parents signal that they wish to be alone with the child. Family and friends are also sometimes part of this process. It is intense, emotional, and painful, but then grief always is. In fact, there is reason to believe that unless death is perceived as real, the healing process of grieving may be derailed. If we, even with the best intentions, gloss over death by pharmacological cosmetics that are aimed at the living but do not help the dying, we may be doing a great disservice. NMBs do not help the dying baby, and therefore should have no place in neonatal EOL care. Thor Willy Ruud Hansen, MD, PhD, MHA, FAAP

Neonatal Intensive Care Unit Oslo University Hospital - Rikshospitalet University of Oslo, Norway

References

Send letter to journal:
Re: Neuromuscular blockers in compasionate care

Verhagen et al describe the use of analgesics, sedatives and neuromuscular blockers during reorientation of care to compassionate measures in Groningen, the Netherlands (1). The authors draw attention to the fact that in 16% of such events, neuromuscular blockers (NMBs) were used. In cases, NMBs were used to eliminate gasping after the endotracheal tube had been removed. Diagnoses and reasons for administering NMBs after the decision to reorient care are described in 55 infants in the study. In two cases it was to prevent gasping, in 14 to stop established gasping and in one case the reason is stated as “to end life”. Futhermore, it was described as requested by parents in 2 cases. Dr Ward Platt has written a thoughtful editorial about this retrospective Dutch survey (2). He writes, “In the UK and perhaps elsewhere I suspect that the administration of such agents to a baby not already paralysed would be much less likely because it is more difficult to justify the use of NMBs on the basis of “double effect”. Because Archives of Diseases in Childhood is the Journal of the United Kingdom’s RCPCH, we feel it is important to make clear that administration of NMBs after extubation of a patient is currently illegal. Double effect might be argued in the event of administering intravenous sedatives. The used of NMBs after assisted ventilation has been withdrawn has the single purpose of ending respirations, thus bringing about the patient’s death.

C Piyasena, IA Laing. Neonatal Unit, Simpson Centre for Reproductive Health, Royal Infirmary of Edinburgh, EH16 4SA Correspondence to: Dr I A Laing, Neonatal Unit, Simpson Centre for Reproductive Health, Royal Infirmary of Edinburgh, EH16 4SA Competing interests: None

REFERENCES