Disclosing a Diagnosis of Cerebral Palsy

Disclosing a Diagnosis of Cerebral Palsy

I personally experienced this situation twenty one years ago when a consultant paediatrician calmly announced that my son would suffer severe cerebral palsy for the rest of his life, before coolly ushering us out of his office. We travelled home and looked up the meaning of cerebral palsy in a medical dictionary! Now, you would use the internet, but should you have to? Why should you be treated in this way?

When one considers the devastation, which the deliverance of news such as this can cause, one would imagine parents would be informed as tactfully and discretely as possible. One would also hope parents would be informed together, in warm, hospitable surroundings and be given as much time as necessary to absorb the magnitude and complexity of the information. This certainly does not seem to be the experience of many parents and to this date, there are many research articles in the literature, which demonstrate the disclosure of such diagnosis by medical professionals to be an ongoing difficulty.

One mother related a particularly bad example of how the ‘news’ was broken to her when she explained to me;
“We were sitting in the paediatrician’s office and I asked his opinion of Ryan’s progress. He just sat there with a cold expression and said; - ‘I’m afraid Ryan is showing early signs of having cerebral palsy. I’ll see you in one month’s time.’ – With that we were asked to leave.”

Another mother described to me the way in which she was informed about her little girl’s problems.
“The best thing you can do is to take her home, keep her warm and comfortable and try to have a proper baby next time.”

Out of the myriad of parents to whom I have spoken down the past few years, only once have I ever met parents who were satisfied with the way in which this situation was handled. These assertions are supported by research, which demonstrates that only twenty percent of parents are satisfied with the way in which the news of their children’s problems was broken to them. It is possible to do this task properly though, as is proven by the study carried out by Nursey, (1991). She achieved a one hundred percent satisfaction rate in an experimental group of parents, who were informed of their children’s’ problems together, in private and in a direct, honest and sympathetic way and who were given immediate and easy access to support services.

A system, which leaves a delicate task as breaking such news, to people who are trained to be cold, calculating clinicians, when precisely the opposite traits are required, is seriously flawed. Would it not be more appropriate in such a situation to have someone available who is not such a ‘cool, calculating clinician,’ someone who is trained to deal with people on a more human level, who could deliver the news in a more tactful manner? The professional resource is certainly available to do this and utilising it would save parents from having to deal with the trauma of receiving such shocking news, delivered in such a dreadfully incompetent manner. Psychologists and other counselling professionals abound and are qualified to deal with every conceivable stressful situation. This professional resource should be tapped, with experienced professionals on hand to talk parents through this dreadfully sensitive situation and beyond. They should act as the parent’s ‘advocate’ with the medical profession and as such would be in a position to provide first hand information and support to new parents. They would be able to guide the family through the emotional minefield, which is to come.

Bringing such a system into the ‘front line’ instead of tolerating a situation where overwrought, confused parents have to find information and access to support services on their own would eradicate other difficulties. -

• Many parents who are dissatisfied with the explanations and information concerning their child’s problems, given to them by the doctor (and there are many!), might be satisfied.

• Input from various disciplines could be more accurately tailored to parental need.

• Parents would be more expertly guided through the trauma of coming to accept their child’s problems, than they ever could be by someone whose training was purely clinical.

Will the medical profession heed these words? No! I predict that parents will still be voicing the same complaints in twenty years time.

Andrew Brereton

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