One young boy's saga as a victim of puerile behaviour in our health care

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Professor Dewan and his surgical team in Mauritius, 2006.

Paediatric surgeon Professor Paddy Dewan relates the saga of one boy subjected to puerile behaviour by one bad apple among our surgeons.

A BOY WITH constipation and soiling came for review of a complex problem that included the “head-space” in which he was trapped by a long-term problem of smelling of faeces-soiled underwear most days. He was a pre-teenager who needed many aspects of his care focused on, including his emotional wellbeing, and that of the family.

He did not need to become embroiled in a battle of egos and politics between the health practitioners charged with his care.

The background is all too typical of the politics of medicine, dating back to Ignaz Semmelweis, who tried to encourage obstetricians to wash their hands before assisting with childbirth, going mad in the process. There are many other examples of medical outcasts, usually people who have made discoveries others are challenged by.

In my case, I have made discoveries, but more importantly refused to play the bully-boy game, to complain about system dysfunction and the lack of a robust quality system, which has rattled the cage.

I would never have contemplated the impact on patients, but was previously aware of clinical decisions made on the basis of “who had what opinion”, rather than the facts.

I played a little game a few years ago. I was at a committee meeting of surgeons who were discussing which restaurant to go to for a conference dinner. There were two choices. I preferred one and noted that others were of a similar view, until I vaguely suggested my preference. Noting that it was likely that my second preference would be chosen (I didn’t really care, which restaurant we went to), I started arguing calmly but strongly against the eatery of my choice. 

We went to my preferred place of dining. The point being the group think moved because of my view (which I had tested by lying about my preference). I was fascinated by the power, disappointed by the game-playing, which appears to also occur in the care of patients.

I would not offer an opinion other than that which in the best interest of the patient, but who cares about a restaurant choice? I present an example of clinical care in which the behaviour appears as puerile as occurred when choosing where to end a conference.

As in the case of the boy detailed below, there appears to be a lack of ability of the medical community to approach a single clinical entity, i.e. an individual patient with a particular problem, with a collaborative approach in which egos, money, politics and bad manners are excluded from the process.

A recent article in Independent Australia shows the interrelationship between three patients. The story below describes one of the three in more ridiculous detail; almost Monty-Pythonesque behaviour.

The “devil” of bad behaviour is often in the detail — detail in this case that would, and should not stand the test of public scrutiny. It should not be up to me to name the individual responsible for the bad behaviour, most of which is about the manner of communication related to the clinical problem, rather than the management of the clinical problem per se, although there are a number of points of clinical concern as well.

In May 2014, Max, as we shall call him, was referred to a tertiary referral centre. This was because I was not able to offer the family the surgical treatment we had agreed was appropriate due to lack of access to facilities and the action of others, rather than from any adverse events from what is a rarely required treatment. 

The option, a rectosigmoidectomy, was discussed in detail and the family given contact with both an international expert and other families to empower them to make the choice they preferred. Max had become compliant with the non-surgical treatment because, for the first time, he had been given some prospect of succuss, rather than merely been fobbed off but his improved compliance had not resolved the severe constipation and soiling.

The referral of 13th of May was by email. That it was by email is an important point, as you will learn. Prior to an operation being undertaken at the end of the year by the surgeon to whom I referred Max, it was already known that the lesser option of taking out only the sigmoid colon had failed in the another referral to the same practitioner a number of months earlier. That boy had gone on to have what was a two-stage rectosigmoidectomy.

The referral discussed the range of options, and did not give an opinion of that which I considered most appropriate —such an approach of not wishing to prejudge another’s opinion, I believe, is valid.

A brief letter, indicating the likelihood of the more limited operation of a sigmoidectomy, was sent by the operating surgeon in September 2014. The operation was in December 2014.

When the family returned for further assistance in March 2015, the parents were VERY unhappy. They felt they had been effectively bullied into accepting the sigmoidectomy option and given false expectations. It was hard to disagree.

To assist the family, I wrote an email to the surgeon, which included, after the initial introductory information.

'Could you please provide ... among other things .... what is the rationale of performing the sigmoidectomy prior to the use of the stimulation?'

The question pertained to the intended postoperative use of external electrical stimulation of the bowel, but only after surgery to remove part of the bowel — the sigmoidectomy. A colleague from the same hospital as the operating surgeon, who had been involved in research on the management of severe constipation, had already stated that the external electrical stimulation does not work in cases such as Max.

A further probing question in my March email was:

'What is your reasoning, and evidence to support, not removing at least part of the rectum, given the diagnosis of a megarectum, particularly given evidence from Marc Levitt (an American expert), and information presented at the Fiji meeting of the Royal Australasian College of surgeons in 2009.'

In an attempt to improve the appropriateness of communication, I wrote to the chief of surgery in the hospital in which Max had had his operation:

 'I note that in the last 12 months there have been at least two boys have a sigmoid colectomy at the your hospital without improvement in their constipation, and that you have not responded to my communications about them. Nor has (the surgeon) responded to contentions about their care that I have raised.'  

Outcome ……… no response.

Later in March 2015, after further contact with the distressed family, I again wrote on their behalf, which included seeking clarification about the expected steps, given the lack of resolution of the clinical problem.

The return communication ... hang on to your hat — it will be presented later, and is worth waiting for!

In the meantime, the boy’s clinical condition remained as before the operation, despite excellent compliance with all aspects of his care. Again, I suggested to the surgeon and the team at his hospital a case conference involving all those involved.

In April 2015, the family saw the surgeon who had performed the sigmoidectomy again — a surgeon who had instructed his secretary to delete any emails from Professor Dewan.

The mother wrote:

'he insists that he did not see your email because his secretary would delete it (as per his directive), but it was clear to me that was not actually the case as the first item on your email was about have (sic) the intolerance tests and that's the first thing he talked about when we came in.'

Motivated by the lack of robust, patient centric care, I undertook to ensure the “refuse-to-read-the email” behaviour was discouraged, thus wrote to the chief of surgery. The response was another few lines that might have been written for Monty Python (with apology to the Monty Python team).

The chief of surgery wrote:

 'Having looked into the matter and discussed with (the surgeon), I am assured that (our hospital) manages all email correspondence in accordance with its obligations under the Health Records Act and the standards issued by the Public Record Office of Victoria in accordance with the Pubic Records Act.'  

Yes the word pubic was in the email. That was on the 17th May 2015.

The chief of surgery had left the prospect of good communication with nowhere to go. But, after seeing the distressed family again, I wrote again, via email, but also organised a snail-mail copy, in which questions that the family had sought clarification about were reiterated. In particular, I sought clarification of what options the family might expect to be pursued if he failed to improve.

Notably, no psychological support had been arranged prior to embarking on surgery, or since and the tests for intolerance to both lactose and fructose were only undertaken after the surgery but not until the question was raised in an email from me.  The family had not been put in contact with any other family in which the treatment of bowel stimulation had been used, so they could discuss the management or the potential outcome.

The email requesting clarification of the alternative steps for a patient that was not responding to the current regimen was sent on 21th September, to which a response via letter was received, dated 30th September 2015:

'Thank you for your letter about Max who is due to see me in the Clinic in a few weeks. At that time, I will assess his current issues and assess whether we need any changes of management.'

The parents have been copied into all my communication, and were given the respect of being sent a copy of the communication from the surgeon who had operated on their child, following which their email comment included:

'the response (or more accurately, lack of response)'

By this stage, I was more than irritated that the family was being treated with such a lack of respect and, perhaps incited by the ridiculous performance of both the sigmoidectomy surgeon and the head of surgery, I reacted by sending one of those emails that is a waste of time:

Thank you for send through the attached letter (I had scanned his letter to allow a re-read to stimulate insight).

Clearly, the letter does not address the considerations raised in my emails and letters about Max, could you please be more detailed.

As always, in this modern era of communication, I would be happy to received electronic communication.

Guess what? ... No reply.

Unless there is a paradigm change in medicine in Australia, the above saga will continue to happen throughout Australia, orchestrated by poor leadership in medicine and a few bad apples.

Professor Paddy Dewan's training in Medicine, Surgery and Paediatric Urology has seen him employed in Melbourne, Dunedin, Dublin, London and the USA. Returning to Australia, he initially took up a position in Adelaide, both as a clinician and researcher in Paediatric Urology. He has renamed congenital urethral obstruction (COPUM), developed new approaches to the management of anorectal anomalies, especially the megarectum (Rectal Ectasia), and has written a number of landmark papers on the use of plastics in medicine and bladder enlargement without the bowel lining (Augmentation). Professor Dewan has been hounded by the Australian Medical Board since 2006 over a patient procedure that had no negative outcomes — and has now finally been dropped.

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