Parents who want God to save girl lose case
Current Affairs, Medical July 19th, 2007“A family judge at the High Court yesterday gave the go-ahead for a seven-month-old girl, who has only one year to live, to receive a bone marrow transplant that has a 50 per cent chance of giving her a normal life, but a 10 per cent chance of killing her.
He authorised the treatment even though it is opposed by the girl’s deeply religious parents, who believe God will provide a miracle cure.” The Telegraph
(This vaguely reminds me of that Babylon 5 TV episode Believers… which reminds me I should complete writing that series of posts. AC1)
July 19th, 2007 at 11:32 am
From the perspective of a medical ethicist (and a Christian one at that) this is an interesting news piece. It covers a number of seemingly contentious areas:
Religion vs Science
Consent vs Paternalism (where a decision is made by others).
To Treat vs To Not Treat (where the latter may or may not include the hope for a miracle).
I have a little bit of discomfort on the first 2 grounds.
The news article, and the Judge’s response to the parents concerns would suggest that these are fundamentalist christians. They are not (hopefully) broadly representative of Christian opinion. But more importantly as I’ll explain in a moment they don’t seem to hold a view that is in accordance with mainstream christian teaching.
My second bit of discomfort is that this debate also involves question of consent. In this case the child is too young to give or withold their own informed consent. So the next port of call is the parents. In this case the parents have witheld their consent on religious and non-scientific grounds, grounds which the medical staff dissagreed with, and in what they interpreted as the childs best interests petitioned the courts to make the decision on the childs behalf. In this case I think it was the right decision, and we must be thankful that we have a system whereby the courts can take that decision as opposed to leaving it to the medical staff to take independently. Now my discomfort surrounds the withdrawal of the right to consent from the parents (due to competing views) but I will explain better in a moment why in this case it was the correct course of action.
The third point (and my last and most conclusive) is that this case is all about the dilemma ‘to treat’ or ‘not to treat’. In Christian ethics (and similarly in other secular schools of thought) there is a theory that the patient (in an ideal consensual context) is entitled to refuse medical treatment. A patient may even refuse life saving treatment if such treatment is extraordinary in nature. Such a patient who refuses is not committing suicide and is not morally culpable for their own death. The debate therefore hinges on what constitutes extraordinary treatment. In the earliest days of transplant surgery it may be described as being extraordinary, where the outcome is not as well known as it is today and where there are few assurances of quality of life (yet alone quantity). Today, extraordinary treatment debate revolves around resuscition protocols in the terminally ill and the very elderly, and occasionally into chemotherapy and experimental surgery.
In this case:
A bone marrow transplant is not an extraordinary surgical or medical procedure.
HLH is an illness that is well understood in respect to the bone marrow transplant.
Prognosis in this situation (such as 50% chance of pertaining to a lifelong cure) are accurate predictions whose margin of error is small.
The procedure itself has a 10% chance of causing death.
In a medical ethical analysis (including from Christian ethics) those two figures are the only ones that need be known.
50% cure from procedure vs 10% chance of death from procedure.
It is not an example of an extraordinary medical procedure, the risk of death is acceptable when balanced with chances of success and when measured against the life-expectancy of the child if no treatment is undertaken.
So of my initial observations, this isn’t really about religion vs science, as a religious medical ethic (with the exception of extreme cults) is generally in favour of appropriate medical intervention. Also although it always undesirable to withdraw consent, as in this case it is a child, from whom consent is not capable of being given, it is in the best interests of the child and its medical carers to seek clarification from an alternative source. And it was pleasing to note that the Judge commented that parents had declared that they would obey the courts ruling (prior to his ruling) indicating that they were prepared to compromise. Finally it is not an extraordinary medical procedure and as such the patient is morally compelled where offered to recieve such treatment.