7 March 2016

The "professionals' meeting"

Creating a consistent message or colluding against parents?

This had a slightly less provocative title when I first wrote it. I was going to call it The professionals' meeting: ensuring consistency or a barrier to collaborative working with parents? but actually I think the current title more accurately reflects my feelings.

Professionals' meetings. Those of us who are "difficult parents", who have children with complex medical issues and who are asking for treatment outside the norm, will probably experience at least one professionals' meeting about our child and their care. We may or may not know about it (and that is an issue in itself) but it will happen.

The professionals gather in a room, discuss the child's case and make a plan of action. Sometimes they feed back to the parents, sometimes they don't. The reason given for these meetings is so that professionals are able to adopt a consistent line, as parents report in research and in real life that inconsistency between health professionals worries them, upsets them or angers them.

I don't disagree that consistency matters. It is very difficult when one day you are told your child is doing really well, and the next day, someone else tells you that actually they're really concerned. Or one day a doctor tells you an x-ray is fine and the next day another doctor tells you the same x-ray is uninterpretable, or...actually I could give you about a thousand examples from Rumer's life.

However, I think the problem isn't so much with inconsistency; it is a problem with honesty. A problem with saying "In my opinion..."; a problem with acknowledging disagreement: "I think X but another doctor thinks Y"; a problem with not wanting to be the bearer of bad news: "Actually your child is not doing as well as we hoped"; a problem with arrogance and pride when they say "X is the best" rather than "My view is that X is the best".

Parents can cope with honest inconsistency - after all, I think most of us know that medical professionals are fallible humans, and we also know that our child is complex. The inconsistency that parents struggle with is receiving X, Y and Z stated as facts when another medical professional tells them that actually A, B and C are the facts. The reality is that, in a complex case, there may not be many certainties and there are often a lot of opinions.  Much better to be frank about what is opinion - "It is my belief that Rumer's breathing pattern is unsustainable" - and what is fact: "It is unusual for a child to stay on a ventilator this long with RSV".

So in short I don't think there are any grounds for meetings among professionals to create a consistent line. When "professionals' meetings" are used in this way, they are often not being used to create a consistent line in order to avoid worrying or upsetting parents (the "parents can't cope with inconsistency" excuse) but to create a consistent line with which to ambush parents. Professionals' meetings are in fact used to bring rogue professionals into line, on the grounds of consistency. They are used to ensure that parents do not hear dissenting voices; that they are given "facts"; that they are not given the opportunity to explore all possible options but are instead told "This is what we do." I am quite amazed that this is acceptable in the days of informed choices.

Parents are then faced with the wall of the institution: everyone saying the same thing. Who benefits from this? Parents? In terms of consistency I guess they're fine, but in terms of having a full understanding of the issues? In terms of making a fully informed choice? In terms of feeling that they have support and understanding? Well no, they don't. What about the child? Do they benefit? They aren't caught up in a war I suppose, but again, what if the line the professionals have come up with is "wrong"? What if options that are right for this child aren't explored?

Take a case in which the parents want higher level treatments which may lead to longer term survival for their child, but will undoubtedly cause pain and suffering, and the child may not survive to hospital discharge. Without this treatment, the child will die; the only alternative to this treatment is palliative care. The professionals meet and have numerous arguments in private: some feel strongly that the treatment should not be given; others are unsure - they can see both sides, the treatment is expensive and those who have responsibility for resources feel they would be wasted on this child. The meeting concludes with an agreed consistent line of "no, the hospital will not offer this treatment to this child" despite the doubts. The parents then start initiating discussions about this treatment and encounter a brick wall, a firm denial of care. Suddenly they have two choices: agree to palliative care or escalate to second opinions, mediation, ethics and ultimately court.

Some parents will fold and agree to palliative care; they live with the regrets for the rest of their days, mourning their child and wondering what would happen if only they'd fought; they wonder how they could have made the healthcare professionals listen, not knowing that by the time they even joined the conversation, it was a done deal. Other parents will fight, and the child is caught up in the war. There are two sides now in a battle. The parents are dependent on an institution which is overtly against them; they feel like it is them versus us and they are so powerless compared to the might of the hospital.

Let's imagine now the same scenario without a "professionals' meeting", without a consistent line. A hospital which truly values collaborative working with parents and does not infantilise them, does not see them as one with the child but as one with the professionals, part of the care team.

There is a meeting; all the professionals attend, as do the parents. This is not a "professionals' meeting" but a multidisciplinary meeting with the whole care team in attendance, including the parents. The parents obviously have a more personal investment in the outcome, so they are supported by an advocate and have the opportunity to meet with the chair before and after the meeting as they wish. They hear all the professional points of view and the disagreements among them; they are able to correct some mistaken facts. They also hear, for the first time, the honest doubts some of the professionals have, the poor outcomes some have seen with this type of treatment. They hear that some professionals support the treatment. They hear both the downsides and the benefits. It upsets them, but they are glad to be able to put all the information together. They get their turn to speak and they feel the professionals have heard them, that they understand where they are coming from; they have the opportunity to present the research they have found. They are supported to do this. They get to answer questions. They feel listened to. They also don't feel it is them against the institution, but that they are part of a group of people on the care team who support the treatment. The meeting ends with a summary of the facts and opinions presented. Not a conclusion. Actions such as getting second opinions from other hospitals and arranging an ethics opinion are agreed.

Between meetings, parents receive feedback on the second opinions (they were able to attach their own information when the opinions were requested) and discuss their views with the advocate; they have a more nuanced understanding of the treatment now; they understand the risks more fully; they can appreciate the concerns some professionals have. They feel everyone is on their child's side even if they don't agree with them. A second meeting is called: sadly they cannot agree a consensus, so there is a vote. Overwhelmingly the professionals vote against the treatment, although some abstain and some disagree. The parents still feel the treatment is right for their child. The parents discuss the next actions with the chair. The recommendation for no treatment will be pursued now; the ethics opinion went with "no treatment" and the providers of the second opinions also did not feel treatment was in the child's best interests. Parents are supported to seek legal advice; the hospital will ask the court for an opinion on the child's best interests. This is not adversarial: they agree that there are different perceptions of the child's interests. The parents will in fact call on "their side" some professionals from this hospital who agree with their point of view. Relationships are maintained, mutual respect is still there, although of course the parents are scared and unhappy. However they are well supported by the professionals and feel heard. That strong "them and us" feeling is not there.

There is never going to be a perfect outcome in this kind of case, although with collaborative working often a consensus can be reached. But heading off to court with mutual respect and having done everything you can is so much better than heading off to court with parents feeling played, out-manoeuvred and unsupported.

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