How do doctors deal with parents who refuse to allow their children to be vaccinated?
How do doctors deal with parents who refuse to vaccinate their children?
Recently I met a young couple whose six-week-old son had just died from whooping cough. They were devastated, but also angry. Their son had been too young for immunisation and had caught whooping cough from a school-age sibling; the older child had been immunised but whooping cough had been circulating among unimmunised children at school. The grief-stricken couple wanted to know, Why had the other parents not had their children immunised? How could they have been so selfish? Shouldn’t there be a law against it?
Immunisation is a topic that polarises opinion. As with climate change, people either tend to trust the experts or doubt them, and there is little room for a halfway position. Ethicists wring their hands: people claim rights, yet rights conflict. One couple’s right to decide whether or not their child is immunised can clash with another couple’s right for their child to be protected from other children’s infections.
There have always been opponents of immunisation. After it was introduced at the beginning of the 19th century, there were large demonstrations in Britain and the US. At one protest in Leicester, England, more than 80,000 people marched through the streets. The US opposition was also fierce, but more litigious.
Today, however, scientists can point to the remarkable successes achieved through immunisation. For centuries, smallpox was a devastating disease that killed many and permanently scarred survivors — the English historian Lord Macaulay called it “the most terrible of all the ministers of death”. Even in 1950, the year I was born, an estimated 50 million people, about 2 per cent of the world’s population, caught smallpox each year, and as many as 10 million of them died from it. By 1979, however, smallpox had been eradicated by immunisation: a remarkable achievement that shows its extraordinary potential to save lives. Today there is almost no one alive who has seen a case of smallpox.
In Africa or Asia you will still see people crippled by polio. Yet polio too will soon disappear. In 1988, there were 350,000 cases worldwide; in 2017 there were just 22 reported cases, according to the World Health Organisation. Of course there is much still to be done. In Africa, I have seen babies and children racked with spasms from tetanus. I have watched helpless as an African doctor’s 14-year-old son lapsed into a coma and died from rabies. I have seen hundreds of children die from meningococcal meningitis. I have seen wards of children with severe measles which, if not fatal, left them weakened and vulnerable to dying from other infections such as severe gastroenteritis. Even in the UK and Australia, in years gone by, I saw children die or become brain damaged from infections that have since all but disappeared due to immunisation programs.
There is overwhelming evidence that immunisation is a potent cause of falling levels of infectious diseases, and that vaccines have never been safer. Yet that is certainly not everyone’s view.
Recently I was asked to see an infant who was desperately ill with a vaccine-preventable disease. The infant survived but was left with massive brain damage. The mother told one of our young doctors that her child was unimmunised. The vaccine for this particular illness is included in the routine immunisation schedule, so this child’s brain damage was almost certainly preventable. The mother’s explanation to the stunned young doctor as to why she did not immunise her infant was far from coherent: a friend had a baby who’d had a reaction to a vaccine, and some others in her circle were opposed to immunisation.
At this point we were faced with a number of ethical dilemmas. Should we pursue the issue of non-immunisation with the mother? One reason to do so would be to try to persuade her to immunise this infant against other infections. A second reason would be to convince her to immunise any future children. The danger of discussing it with the mother at this stage was that, whether or not she acknowledged it, she must inevitably feel guilty that her decision had altered the course of her child’s life and adversely affected her family’s future. That is a huge burden to carry.
Parents in the same situation often appear to deny guilt and say it was fate or God’s will. If the child recovers, they rarely get him or her immunised with the vaccines they have missed; presumably to do so would be to admit to having made a bad decision. In general, parents who refuse all vaccines are very unlikely to change their minds.
It is not a doctor’s job to confront people with blame and lay guilt on them. Would even raising the subject of immunisation with the mother be a form of accusation? In the end we decided not to discuss immunisation with her at the time of her child’s acute illness, although for the child’s sake we will when she returns for a follow-up.
Like all medical interventions, vaccines occasionally cause harm, but nowadays they are overwhelmingly safe and effective. My view is that people who do not immunise their children are making a poor choice. But the principle of respect for people’s autonomy says that we should let them decide for themselves, even if we do not agree with their choices. Doctors and other members of society are very reluctant to interfere with parental decision-making about their children’s health. For this reason, in many places, including Australia, the UK and many US states, routine childhood immunisation is optional. (Though in Australia many states ban unimmunised children from child care centres and full immunisation is required for parents to receive certain tax benefits and rebates.) But there are specific situations regarding immunisation in which the risks to the child from not immunising are greater, and the usual rules about parental choice and compulsion may not apply.
In 2009, I was consulted about a newly born baby whose mother was known to have a chronic hepatitis B infection; she and the baby’s father had refused to allow doctors to immunise the baby. Chronic hepatitis B is still a serious infection with lifelong implications. The risk that a baby will develop chronic hepatitis B infection from its mother varies according to how active the mother’s infection is.
In this case, the mother’s infection was relatively quiescent and the risk to the baby without any intervention was 10 per cent (a one in 10 chance). However, we knew that injecting the baby with hepatitis B vaccine (and giving an injection of antibody to mop up any virus and increase the protection) would reduce the risk to 1 per cent (1 in 100). There is ample evidence that both the vaccine and the immunoglobulin (antibody) are extremely safe. We tried to persuade the parents to let us protect their baby, but they were adamant in their belief that the aluminium in the vaccine was toxic and would be harmful. We pointed out that if their child caught hepatitis B, that child would be at greatly increased risk of liver cancer, a risk that could probably have been prevented by the vaccine. The parents did not change their minds.
We decided we had a duty to try to protect the infant. Because the proposed intervention was very safe and minimally invasive, and the outcome if the baby became infected was serious and could quite possibly shorten the baby’s life significantly, we felt justified in asking a court to decide whether or not it was reasonable to overrule the parents to protect their child. We went to court and won the case, but it was a pyrrhic victory. The parents left the hospital secretly and went on the run with the baby and a three-year-old sibling, evading child protection staff and making frequent phone calls to the media, saying: “The doctors are infringing our rights.” Anti-immunisation lobby groups championed their cause. We pointed out that the baby had rights too, and that in this case the parents’ and the baby’s rights were in conflict, and that the court — not us — had ruled that the baby’s rights took precedence.
The vaccine and immunoglobulin are usually given at birth, ideally within two to three days of birth; the greater the delay, the less effective they will be because the virus will have infected the baby. After the family had been on the run for a week, it was probably too late to immunise the child and the authorities quietly dropped the pursuit.
Although the baby in this case was never given hepatitis B vaccine, the case at least set a legal precedent, so that when similar cases have gone to the Australian courts since, the court has usually ruled in favour of the doctors. On the few subsequent occasions when my colleagues and I have faced similar situations, we have been able to tell the parents that we are prepared to go to court and will likely win. Confronted with this, the parents I have counselled have all decided to have their children immunised against hepatitis B. I have been able to continue seeing the baby and the parents in the clinic in an atmosphere of mutual respect, giving the baby each dose of hepatitis B vaccine while respecting the parents’ decision about other routine childhood vaccines.
In 1996, a film-maker made a supposedly scientific documentary for the ABC. She interviewed people who were both pro- and anti immunisation in equal numbers, “for balance”. She was pregnant with her first child, and concluded the documentary by saying that she had not yet decided whether to get her baby immunised. I was one of the doctors interviewed. When the documentary was shown in Australia it generated considerable debate and controversy.
Two weeks later I was in Port Moresby, giving a presentation to the hospital about immunisation. A few people in the audience recognised me from the doco, which had been shown that week on local television. They were puzzled. Their wards were filled with children with tuberculosis, newborns dying from tetanus, and babies with rotavirus gastroenteritis, all preventable by immunisation. On the streets were people crippled forever by poliomyelitis. But PNG did not have the money or the public health infrastructure to deliver vaccines effectively to its people. Papua New Guineans knew vaccines could prevent the devastating diseases they saw every day and they could not understand why anyone in Australia would dream of not immunising their child. Immunisation scepticism is very much a first-world problem.
Professor David Isaacs is a consultant paediatrician at the Children’s Hospital at Westmead, Sydney, and Clinical Professor in Paediatric Infectious Diseases at the University of Sydney. Edited extract from Defeating t he Ministers of Death by David Isaacs (HarperCollins Australia, $34.99) available from April 1.