30 May 2016

The responsibilities of parents

Quite often when we asked for things like access to Rumer's notes, or to be involved in medical decisions, we were told, in order to explain why they had policies against these things, that:

  • "No other parents have ever requested this."
  • "You are exceptional parents. Other parents wouldn't understand the notes."
  • "Not all parents want to be involved in medical decisions; some parents want us to make the decisions."

Even with the best doctors, the ones who truly value parental involvement, we had discussions in which they told us that, for some parents, they had to make the decisions. For example, a very good neonatologist described to us how he had met parents who 'couldn't' make the decision to withdraw treatment from their child, and they needed him as a doctor to tell them that they had no choice and to initiate the withdrawal of treatment. I am not accusing him of lying: I have myself heard parents, who would decline blood products for their children for religious reasons, explain their actions on the basis that their child won't die because the doctors will give them blood anyway. Clearly there are parents who prefer doctors to make decisions for them.

I recently read a blog post by an extremely family-focused Canadian neonatologist, who agreed with us that parents should be involved in multidisciplinary meetings, before clarifying: "if they want to be". My question is: should parents be able to say, "No, I don't want to be involved," or "No, you make the decision," or indicate by their actions or inaction that they want the medical team to lead on the child's care?

I don't think so. I think that when you become a parent, you take on responsibilities, and one of those responsibilities is to make decisions on behalf of your child. If your child is healthy, you make decisions on feeding methods, sleep, vaccinations and a whole host of other things, and generally most people would be surprised if you refused to make a decision on these topics and looked to someone else to decide for you. If your child is sick, then it is the same. The responsibility for decision-making lies with you - at least, until the child is old enough to take on some of the responsibility themselves. With healthy and sick children you may turn to outside agencies for advice and information, but in the end, the choice has to be yours.

I'm not saying it's easy to make decisions: it isn't. Especially when those decisions require an understanding of complex medical information, or will shorten or end the life of your child. I am not saying that all parents find it equally easy to comprehend complicated information; however, the responsibility of the medical team is to communicate that information to parents in a way they can understand and to clarify their understanding so they have the basis for decision-making. That isn't easy either, but it is the job of a doctor. If parents are struggling despite their best efforts, they can appoint a medical advocate to help communicate. If doctors have ethical objections to the decisions the parents are making, they can resolve using the procedures laid down in their professional guidance. (Other than in extreme emergencies in which there is no time to communicate, this never involves simply imposing their own decision.)

I realise that many people, especially medical professionals, will now be saying, "But not all parents want to..." - and that is my argument: it doesn't matter whether they want to; parents should and must shoulder their responsibilities, and they should not be sheltered from them, out of paternalism or kindness or anything else. From the best of intentions - in order to avoid upsetting parents; to sidestep difficult, frank discussions; to be kind; to respect parents' wishes - professionals frequently permit parents to turn a blind eye to their responsibilities.

This has some advantages for professionals. It takes time to explain medical information to parents, and it is often frustrating to explain complex concepts to lay people. How much easier to have the discussion with your fellow professionals, or just make the decision that you  think is best? Most of us like it when people make the 'right' decisions, and parents may not always do so. If you just make the decision yourself, then the 'right' decision is made: that's pretty satisfying. Decision-making with other professionals avoids emotion too, which some appreciate: decision-making with parents can be a messy, upsetting business.

However, it also has some significant disadvantages, which are often not mentioned. Professionals who make decisions which rightfully belong to the parents (ie. all non-emergency decisions) put themselves straight in the line of fire when things go wrong. When you take the responsibility of making the decision, you get the responsibility of the outcome. This can have significant repercussions if things turn out badly, or in a way the parents come to reject. Those parents who you didn't want to upset end up blaming you. They took no responsibility for the decision, and they hold you accountable for the outcome.

So what if...

  • parents can't or won't make a decision?
  • parents are unable to comprehend the information needed to make a decision?
  • parents make a decision which you the doctor(s) consider not to be in the child's best interests?
  • it's an emergency?

These things are really not issues: we already have clear guidance in place for dealing with them. Because, interestingly, legally, the decisions do  lie with parents: not just parents who want to make decisions but all  parents.

So if parents can't or won't make a decision, and despite your support and work with them, they still won't, this does not mean that the medical professional now takes over. The decision, if parents cannot or will not make it, lies firmly with a judge. I would suggest that if parents were empowered and supported, these situations would be rare.

In the case of parents being unable to comprehend the information even though you have employed every means available to enable them to do so: again, the decision lies with a judge. When we want a neutral opinion about a child's best interests, we should be asking a court, not a doctor. If the issue with comprehension is likely to be ongoing, the court can appoint someone to make medical decisions (and other decisions, if appropriate) for the child.

If parents make a decision that you consider not to be in the child's best interests and you have escalated appropriately according to guidelines (you know the drill! Work toward consensus, mediation, ethics, etc...) then I guess you are off to court again.

And emergencies? Well, then, and only then, is it the responsibility of the physician to act in accordance with what they perceive to be in the child's best interests, regardless of parental views. However, where an emergency is foreseeable in advance as being reasonably likely, parental views on how to handle it should be sought and agreement reached, in line with any other medical situation. And even during the emergency, communication with parents and parental decision-making should be adhered to wherever possible. Rare is the emergency in which there is truly no room for any parental decision-making whatsoever.

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