When patients are more complex than average, or there are multiple complications, or difficult ethical issues, we frequently organize “multidisciplinary conferences” which involve all the medical consultants and nursing, often also our social work and/or psychology personnel and the spiritual care person, sometimes respiratory therapy and other therapists as well. We may do this to try to hash out difficult issues, make sure we are all on the same page, to make plans for care and to make sure that we have discussed the different possible approaches among ourselves. Most of our conferences don’t currently include the parents, but the parents are told the conference is going on, and someone will talk to them about it afterward.
The reasons for not including parents have been multiple, and vary from patient to patient, sometimes the issues are very technical, sometimes feelings in the team are running high, sometimes we are really not sure what to do and want to discuss the limits of what is acceptable.
I’ve often thought it would be better to have parents at many of our conferences, I think that, apart from some of the more technical issues, we should have parents as part of the multidisciplinary group; on the other hand there are often strong disagreements (sometimes even arguments) and I wonder if it would help parents to be present, or might harm them.
What I mean about the technical issues is illustrated by a hypothetical case of a child with pulmonary atresia and oesophageal atresia. The baby needs interventions for the heart and for the oesophagus, but is stable on prostaglandins. We have to plan when each of these is going to be done, in what order, and what to do about the other issue while one issue is being addressed. I think that a discussion like that could be with or without the parents, based on their wish to be there or not. On the other hand if that same baby was also very preterm then the questions being asked will also include a discussion of whether ongoing intensive care with multiple procedures and a reduced chance of long-term survival is appropriate and has as much to do with values as it does with the very limited statistics about survival that might help. In that circumstance, surely the parents should be there (unless they don’t want to be).
One thing I don’t think we should aim to do when the questions are about ethics and limits of care and so on, is to finish the conference with a single plan. To come out of the conference with a decision that palliative care will be instituted, for example, would be completely inappropriate. That is a decision that the parents must be involved in.
I think health care professionals often think that it is important that we all present the same message, that there is consistency and consensus and that parents are not exposed to the differences of opinion that are the reality of all human decisions. But how do parents think about that?
The view point of the parents is something that has rarely been heard, however. One very strong opinion was recently posted over at Rumer’s Rainbow, a blog from the parents of a child with trisomy 18. The title of the post says a lot “The “professionals’ meeting”: creating a consistent message or colluding against parents?”
I’d like to quote a few paragraphs from the post, and invite you all to go and read the whole parental perspective.
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.
Rumer’s parent goes on to imagine what it would be like in “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”.
The blog has lots of other good stuff on it. The most recent post for example, a letter written to a major hospital in the UK, or a post which might make you uncomfortable called “How to counsel parents: A guide for consultant neonatologists, part 1“. Personally I am waiting for parts 2, 3 and 4.