The real issues in the Maraachli baby case

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.

FOX news continues to misreport Maraachli baby story

http://www.foxnews.com/world/2011/02/24/canadian-family-life-support-battle-denied-request-hospital-transfer/

I first posted about this tragic story yesterday.

The new information is that the hospital in Michigan refused to accept the baby to perform a tracheotomy.

Normal people hearing that may feel bad that the family's hoped-for plan for the baby to die at home won't happen. They may also clue in that this isn't a story about universal medicare in Canada, but about difficult end-of-life health care decisions for an infant, since an American hospital came to the same decision as the Canadian one.

But no....Fox News can't let go of a good opportunity to do some fear-mongering. They just need to distort some facts along the way.

#1: Say that the child was ordered off life support by "government health officials". No, he wasn't. The Consent and Capacity Review Board is an independent tribunal which deals with the issue of who can make health care decisions on behalf of someone else. See http://www.ccboard.on.ca/scripts/english/aboutus/index.asp

#2: Refer to "Canadian health care allocation officials" making the decision to remove the life support. No such thing exists! The Consent and Capacity Review Board has NOTHING to do with health care spending, and it is an independent board which isn't under the control of politicians.

#3: Say that the hospital is approaching the "Canadian government" for permission to remove the life support. No, it isn't. The Canadian government has no role in this case, since health care is a provincial responsibility. The hospital would need to deal with the Office of the Public Guardian and Trustee of Ontario, which is responsible for making health care decisions for someone who is mentally incapable if there are no other suitable substitute decision makers. They cannot consider any factors other than the interests or previously expressed wishes of the patient.

I don't necessary expect all Americans to know about the details of federal/provincial jurisdiction and the exact mechanism of consent to treatment procedures - but if it is your job to report on a story, get enough information to do your job properly. Don't make up for lack of information by simply making up information that fits into your political agenda - like inventing "Canadian health care allocation officials".

Here is a link to the original decision of the Consent and Capacity Review Board, which provides a detailed overview of the law and of the medical facts. It's clear that either leaving the breathing tube in or doing a tracheotomy would not be benign measures.

http://www.canlii.org/en/on/onccb/doc/2011/2011canlii7955/2011canlii7955.html

Nursing in Pubic, Part 2

http://community.babycenter.com/post/a26558233/bf_in_public?cpg=1&csi=2305345030&pd=-3

How sad is it that people can see a disabled woman who clearly has her hands full taking care of her young children and doing basic tasks like shopping, and think that it is appropriate to subject her to ridicule or suggest that she should hide from public view?

Seriously, where is the basic human decency?

More fear-mongering about Canada's "socialized medicine"

http://community.babycenter.com/post/a26539077/canadian_judge_orders_breathing_tube_removed_from_baby?cpg=1&csi=2304845086&pd=-1

First, Fox gets basic facts wrong in its coverage of the story (like the role of the Office of the Public Guardian and Trustee), then posters with an agenda distort it further.

This is undoubtedly a tragic story.

The hospital may be motivated, in part, by a concern about spending medical resources in a situation of medical futility. However, by law they cannot do anything without consent. The court order gave a deadline for the parents to consent, but since the parents didn't consent, the hospital wasn't able to do anything.

I don't have the court decision in front of me, but we do have an independent judiciary. This wasn't a decision of a bureaucrat bean-counter.

If the parents don't give consent, the hospital may seek it from the Office of the Public Guardian and Trustee. No, they are not Public Defenders. They are a special government office mandated to provide specific services to people who are mentally incapable of making their own decisions - including health care decisions. In the case of a minor, the criteria for their health care decision would be simply the best interests of the child. They can't consider the cost issue.

Now, I don't pretend to know the least horrible way for a child to die. It all sounds hideous. I'm not sure, though, that it's better to subject this child to a tracheotomy just so he can be moved home, as opposed to simply removing the breathing tube. It may be - and perhaps the fact that the parents had previous experience with this gives them a reason to choose it now.

There are issues here about the extent of parental discretion in making medicals decisions, and the role of hospitals where they believe that further treatment is futile or even harmful. These issues should be discussed. Falsely labelling this as an issue about Evil Socialized Medicine, however, helps no one.

Roles of religions with people with mental illness

What duty, if any, do religions have, when reaching out to people who may have some sort of mental illness or instability, to try to ensure that the teachings are not taken out of context or misused?

Religious groups can be very supportive and tend to reach out to "lost sheep". Some of this work is really great. What happens, though, when the message ends up being twisted in unintended ways?

Should religious groups tell folks in no uncertain terms: "If you think you hear the Voice of G-d, go back on your meds NOW"?

If a religious group reaches out to prisoners, do they need to take extra steps to make sure that new converts aren't going to commit violence in the name of that religion?