As I mentioned in 2 previous posts, the court decision in the case of baby Joseph Maraachli to remove his breathing tube has nothing to do with mythical "health care allocation officials" or universal medicare. If anything, the Canadian health care system avoided having this case decided on the basis of finances, because the mother is disabled by lupus and the father has not been able to work since he is caring for the other family members.
The case does, however, raise some questions about Ontario's Health Care Consent Act. [See the link in the previous post to the decision of the Consent and Capacity Review Board for more details]
That law gives parents the authority to make decisions on behalf of children who are too young to be capable of making their own health care decisions. However, it also says that health care providers can challenge any substitute decision maker (including parents) in front of the Consent and Capacity Review Board if they believe that the decision is not in the best interests of the patient.
Now, on the face of it, it may seem hard to argue with this. After all, we all want to do what is "in the best interests of the child", right? The problem, though, is that there's a pretty low threshold for interfering with the decision of a parent, and not much deference given to parental views.
There are obvious cases where parents shouldn't be allowed to make certain health care decisions. Our child protection law, the Children and Family Services Act, deals with many of these cases. If a parent is abusive or neglectful, or if they refuse consent to treatment to cure, prevent or alleviate harm, a court may intervene.
In this case, though, we have parents who are not mentally incapable and who are clearly loving, devoted parents. Their proposed plan isn't completely outrageous, since they want to repeat what was done for their daughter 9 years ago. This isn't a simple issue, and there are real questions about the extent to which a child in this baby's condition would suffer in either scenario, and weighing of the value of quality vs. duration of life. I truly believe that the doctors, tribunal and court have taken these issues seriously and carefully considered the evidence. The question, though, is whether the law should place them in the position of making the decision at all, where loving and capable parents are available. Recognize that health care providers have an important role to play in diagnosing, treating and providing all relevant information, but they don't make the ultimate decisions. Respect that parents will need to live with whatever decision is made, and they may consider factors such as their own values, experiences and parenting instincts. Recognize that interfering with parental rights is not benign, even though it is sometimes necessary in extreme cases.
I've had situations where I initially had concerns about my kids dismissed by doctors, only to later have them confirm that I was right. I've also had situations where we made informed decisions to do things that may have been slightly different than what the doctor would have expected. Luckily, I've never had my parental decision-making rights challenged.