Posted on March 14, 2019 at 7:29 AM
By Dominic Wilkinson @Neonatalethics
Last week, medical specialists in the US reported a case of severe tetanus in an unvaccinated 6 year old child, (who I will call ‘C’). The boy had had a minor cut, but six days later he developed intense painful muscle spasms and was rushed to hospital. (Tetanus used to be called, for obvious reasons, “lockjaw”). C was critically unwell, required a tracheostomy and a prolonged stay in intensive care. Patients with this illness develop excruciating muscle spasms in response to noise or disturbance. C had to be heavily sedated and treated in a darkened room with ear plugs for days. The boy was finally discharged from hospital to a rehabilitation facility after 57 days (and an $811,000 hospital bill).
In a disturbing post-script to the case report, the specialists noted that despite being extensively counselled by the hospital staff that this illness could recur, his parents refused for C to be vaccinated with the tetanus (or any other) vaccine.
C has been seriously harmed by his parents’ decision to decline vaccinations. Should he now be vaccinated against his parents’ wishes? Or could a more radical response be justified?
Tetanus is a life-threatening illness that is almost completely preventable by vaccination. In the state of Oregon, where C lives, this was the first case of tetanus in over 30 years. In the US, the incidence and mortality from tetanus have fallen dramatically since the start of the 20thcentury due, in large part, to the introduction of a tetanus vaccine in the 1940s.
Public health records in the US indicate that cases of tetanus in children are now rare; where they occur, the majority occur in children, like C, whose parents refuse vaccination for religious or “philosophic”* reasons.
Should vaccination of children against tetanus be mandatory? Like the other major illnesses included in the standard vaccine schedule, tetanus is uncommon, but potentially life-threatening. The vaccine is highly effective and safe.
One feature of tetanus, that makes it different from other vaccine preventable diseases, is that there is no impact of vaccination on herd immunity. The bacteria (Clostridium tetani) is found in the natural environment (eg in soil). A strong ethical argument in favour of compulsory vaccination is the benefit of preventing spread of infection to others. (For example, Alberto Giubilini, in his recent open access book on the ethics of vaccination, argues that there is a collective responsibility to contribute to herd immunity). However, this argument does not apply to tetanus – the benefit of vaccination is purely for the individual.**
Alternatively, tetanus vaccination might be seen as an example of “easy rescue”. Philosopher Tim Scanlon has described the duty of easy rescue as applying if “you can prevent something very bad from happening (…) by making only a slight (or even moderate) sacrifice”. In such circumstances, Scanlon (and other philosophers like Julian Savulescu), have argued that there is an obligation to rescue.
Normally, though, tetanus vaccination is not made compulsory.
One argument in support of tetanus vaccine being voluntary is the idea that parents are permitted to make suboptimal choices for their children. Parents make a variety of decisions that impose some risk on their children. As long as those risks are small enough, the parental choice is potentially regarded as being within the “zone of parental discretion” – the range of permissible parent choices. If the risk is higher – imposing a significant risk on the child, that would be harmful and should prohibited. For example, driving children in a car puts them at a small riskof being in a fatal car crash (~1 in 20,000 per year). Most people would presumably regard that as an acceptably low level of risk. However, if parents drove their children without seat belts, considerably in excess of the speed limit, that would, I suspect, cross the threshold into a “harmful” choice.
What is the risk for an unvaccinated child? It is difficult to find reliable estimates. There were approximately 5 cases of tetanus per million population in the US in the 1940s (prior to widespread vaccination). That might correspond to a risk per year of about 1 in 200,000. Assuming that risk remains across childhood, that might mean a risk of about 1 in 11,000 for an individual child (presumably, once an adult, a young person could decide to vaccinate themselves if they wished).
Let us assume that this level of risk is sufficiently small that parents are allowed to impose that risk on their child.
What does that mean for the case of C, and his parents steadfast opposition to immunisation? In his case, it is very clear that their decision to refuse vaccination has caused very substantial harm to him. Does that mean that they forfeit their right to refuse further vaccines?
I suspect that the paediatricians who cared for C would have felt this way. C not only suffered a very serious, preventable illness, but he also experienced extreme, and very protracted pain and distress. Surely any rational parent, having witnessed this, would acquiesce to interventions that might reduce the risk of this recurring?
One of the other unusual features of tetanus (compared with other vaccine-preventable diseases) is that the illness does not lead to natural immunity. Those children and adults who have had tetanus once can have it again.
Yet, the authorities in Oregon did not vaccinate C against his parental objections. Presumably they reasoned that unless there is an increased risk of recurrence, this situation would still fall within the range of permissible parental suboptimal choices. Much as paediatricians might be tempted to judge C’s parents harshly because of the terrible consequences of the choice that they made, our focus should be forwards, not backwards. The question is – what is the risk of harm of this choice, now and in the future?
However, perhaps that is too simplistic?
When health professionals or social services are contemplating whether to override parents’ choices about treatment, or to take a child into care – the parents past actions areimportant. They provide vital evidence about the parents’ ability and willingness to act protectively for the child. Where parents have made unwise choices in the past, that may predict their likelihood of doing so in the future. In that respect, it is important to assess (as far as possible) their insight into those past choices. And it is there that, (based on the limited information provided about the case) C’s parents look most suspect. We might accept that some parents come to believe (despite all the scientific evidence to the contrary) that vaccines are harmful. After all, it isn’t always easy to tell fact from ‘alternative fact’, genuine news from fake news. Yet it is profoundly concerning that a set of parents might persist in this belief despite dramatic and distressing evidence of their child’s serious illness, and despite what is described as “extensive review of the risks and benefits of tetanus vaccination by physicians”.
There is a word in the English language for an “idiosyncratic belief or impression maintained despite being contradicted by reality or rational argument”. It is difficult to think of any word better than “delusion” to describe the sort of behaviour described by C’s parents. The question in such cases, for doctors or for social services, is whether there is reason to think that parents’ anti-vaccine delusion affects their ability to make other protective healthcare decisions for their child. It may be that apart from vaccine refusal parents behave entirely appropriately. In that case, their choice may be respected, much as it is regretted.
However, if there are wider concerns about parents’ ability to safeguard their child from harm, in a child who has already been significantly harmed by their choices, there should be serious consideration to appointing a separate medical decision-maker for child, or even for taking the child into care.
*The cited paper describes as “philosophic”, parents who decline vaccines on the basis of non-religious beliefs eg that vaccines are ineffective or harmful. I will leave it to readers to decide whether this is a correct use of the adjective…
**A separate reason in favour of compulsory vaccination might relate to avoiding the costs of treatment of tetanus infection. I will set that aside here, but the costs of C’s care illustrate the potential impact on a health system of tetanus. One additional question is whether C’s parents should be liable for his health care costs.