Life or no-life on the ventilator: the argument from parental freedom

In the High Court this week, parents of nine-month old infant OT are fighting a request by doctors to turn off the infant’s life support. The infant has been on a breathing machine since 3 weeks of age, and apparently has severe brain damage. This case has obvious echoes with the highly publicised case of Charlotte Wyatt, and the earlier case of baby MB. In both those instances courts ruled in the parents’ favour and life support was continued.

At this stage there are relatively few facts available about the case of OT. It is difficult to know whether or not treatment should continue in this specific instance. But there are some general points worth noting about this sort of case.

There are two separate reasons why we might think that treatment should not continue. The first of these is the worry that doing so is a form of cruelty. The pain and suffering involved in treating OT may outweigh any benefits that he can gain from continued life. This appears to be the belief of the doctors looking after him. The second reason is that intensive care is an expensive and limited resource. If OT continues to be treated on a breathing machine there will be other children who are unable to access an intensive care bed, or who must be transferred to another hospital where such a bed can be found.

It is likely that the court case will focus on the first of these considerations. The court will attempt to determine whether or not it is in the ‘best interests’ of OT to have treatment continued. They will seek medical opinions about the likelihood of OT recovering, and the degree to which he may be experiencing pain. But the problem is that there is a fundamental problem in determining OT’s best interests. It is impossible to know what he is experiencing. Repeated suctioning of his breathing tube, blood tests and medical procedures could be painful and uncomfortable, but in an infant who has suffered brain damage it can be extremely difficult to tell how much awareness they have of these. Furthermore it is difficult to know how much such an infant is aware of their surroundings, how much comfort they take from the voice of their parents, from being cuddled, from hearing music played to them. Even if we could know these things we would have to weigh them up, and different people will weigh these differently. OT’s parents are likely to place more emphasis on the potential positives, and the small (perhaps extremely small) chance of improvement. His doctors (with their ethical upbringing emphasising ‘first do no harm’) are likely to place more emphasis on the potential suffering. There is no fact about best interests – it is a value judgement about whether treatment should continue, and different people will reach different judgements about this.

Where there is a high chance that continued treatment will cause a child to suffer, and a very low chance that they will be able to experience the goods of life, to be independent, to communicate, to be aware of their surroundings, to develop deep reciprocal relationships - there is a strong case for withdrawing life support and allowing the child to die. Parents should agree to withdrawal of life support. They should be counselled, supported, and encouraged to come to that difficult decision. But given the difficulty in determining the best interests of a child like MB, or OT, or Charlotte Wyatt there is also a strong argument that ultimately their choice should be respected – as far as possible.

That is consistent with the way that the courts have ruled in previous cases. But the rider – ‘as far as possible’ alludes to the limits of this. Parents have a broad right to request life support for their children, but they do not have a right to demand this at the cost of other infants and children.

Links
Parents of baby kept alive by ventilator launch court battle to prevent doctors letting him die Daily Mail 110309

Baby Charlotte wins reprieve on her second birthday Times 211005

The baby MB case: medical decision making in the context of uncertain infant suffering Monique Jonas Journal Medical Ethics 2007; 33: 541-4

Comments

[Philip]

If I have read your argument right, you say that ultimately we must weigh up the potential suffering of the baby and evaluate it against the potential benefits from continued life. The problem, you say, is that people will come to different conclusions. We should therefore be minded to side with the parents, who are the best representatives of the child, and give them the freedom to choose how best to proceed.

Two questions come to mind:

1. Why, in an argument which relies on freedom, should we value the freedom of the parents without considering the freedom of the child? I accept that you might give more weight to the parents in this case, but surely the child's freedom counts for something?

2. Since the child is unconscious, it may be likely that he or she is experiencing no pain at all. A cost-benefit analysis in this case will always yield a result stipulating that life support should be continued because even a small chance of potential benefits from life will outweigh the zero suffering of the child's present circumstances. It may or may not be that this is the right outcome, but is it problematic that the method we use to arrive there is biased in this way?

[Marc Zaffran, MD (Guest researcher, CREUM, Montreal, Qc)]

The interesting thing is that, a few days ago, Canadian parents have sued the Ethics Committee of a Montreal children's hospital for the opposite situation.
After their child had been diagnosed at birth with a serious neurological lesion (provoked by a neonatal intracranial hematoma), they asked the doctors in the reanimation unit to stop the ventilation system and the enteral feeding through a gastric tube. The Ethics Committee opposed that common decision and now the parents have a severely neurologically-impaired 18 year old. They claim they weren't informed of the decision and since Ethics Committee have only an advisory role, one may wonder why the unit's doctors decided to follow that advice against the parents' decision and without informing them.
But it seems that in Quebec, when there is that kind of conflict, the decision still rests with the medical team, not with a Court decision...

[Marc Zaffran, MD (Guest researcher, CREUM, Montreal, Qc)]

sorry, I made a mistake in my previous comment. One should read : "Now they have a severely impaired 18-MONTH old".

[James Wilkinson]

I am a disability and civil rights attorney in the U.S. In the past 6 months I have been researching these issues under disability rights laws, such as the US's ADA and the Intl Convention on the Rights of Persons with Disabilities. I conclude that it is a violation of those standards for medical providers to counsel parents to withdraw or withhold treatment or use drugs to kill the infant, as is done in Netherlands, Belgium and elsewhere, because of the projected poor quality of life (QOL) of the child.

This projection is often wrong and even if correct in some medical sense, reflects negative stereotypes about life with disabilities.

The content of the QOL assessments are replete with disability factors and the ADA, the CRPD and other laws say that our institutionsand service providers should not deny services to persons because of disability. In fact, they are written to compel institutions to look for every way to given these infants all chances at life and improved "quality."

I am not talking about end of life decisions where death is imminent; those recommendations are not, in my view, based on disability. The human rights laws also do not govern what parents may decide - that is a matter for child abuse and criminal law interpretation.

But as a matter of disability rights, institutions and service providers cannot legally counsel for infanticide or euthanasia because the infant may grow up to be "too disabled". That is disability discrimination. I expect to publish a paper on this analysis soon.

[Dominic Wilkinson]

Whether or not something is discriminatory (in the sense in which you are employing it) depends not simply on whether the characteristic is used to make a decision - but critically on whether it is morally relevant to that decision.
Is it discriminatory to provide wheelchairs only to people who are unable to walk? It seems an absurd question. But it involves making a decision that is based on the presence or absence of a disability (in this case the absence of a disability). You might want to say - ah but this is 'positive' discrimination, so that is OK.
What about a decision to deny a person who is 4ft a place on a basketball team? It would be discriminatory (in the important sense) to deny such a person a job as a clerk or as a doctor or as a lawyer. But it is relevant to their ability to function as a professional basketballer that they are 4ft tall.
As for decisions about life support, the question is whether future disability is relevant to that decision. If it is possible for disability to make a life so difficult for that individual that continued existence would be worse than death, then that disability is utterly relevant to a decision about life support. I cannot comment on US legislation.
However, in the UK there is clear legal precedent (Re J 1990, Re C 1990 and others subsequently) that it may not be in the best interests of an infant to provide life sustaining treatment because of the severity of their current and future impairment, and a judgement that it would be 'intolerable' to do so. Recent judgements have made it clear that such decisions are consistent with the European Convention on Human Rights.