Edicts from on high II: ethics committee edition


I was bemoaning ethics committees to someone the other day and they told me of this case in which Australian Hospitals refused a patient – a nurse who had done her homework – aggressive chemotherapy for her MS. The ethics committee knew better. So she had to toddle off to Russia and pay $100,000 odd for the trip and the treatment – which at least so far as stopped the progression of the MS dead and does so in most cases.

Makes your blood boil. But there should be criminal sanctions against the behaviour of whomever was responsible for bundling Lauren Kish out of Canberra Hospital, mid course in the chemo because the ‘ethics committee’ had got cold feet about it. Some committee. Some ethics. What more dramatic illustration of whose interests are really served on such bodies, or as I said in an earlier post on ‘Red Tape, Political Correctness and Edicts from On-high‘ concerning the vast list of things one was not permitted to talk about when interviewing students for places:

One might write this off as just a pity, a small silly excess to which we have gone, but it is an example of a larger phenomenon that is becoming more and more evident and unfortunate – the domination of daily life with edicts from on high. In this case, an issue arises. Those at the top of the hierarchical system then get into ‘something must be done’ mode. It is time to issue instructions. So instructions are issued. The problem is that the issue may be one of considerable subtlety. . . .[T]the real energy in the system is not really deployed trying to engage with the issue and minimise the kinds of [evil identified].  The energy is directed towards minimising the organisation’s exposure to risk. And once this is the frame, the actual issue pretty much disappears, indeed the edict is precisely to make it disappear in all the organisation’s official conduct. So much for engaging with the issue and trying to do something about it. We’re just covering our arses here.

 What better and more grandly immoral example than the one above? 60 Minutes fired the questions below at the Canberra Hospital. It is like shooting fish in a barrell. But like Orwellians from central casting, the response was blanded-out pusillanimity by press release here and then another one here. Annihilation by platitude.

Here are 60 Minutes’ questions.

1. You say this treatment (stem cell transplant) is “not widely accepted for this use, with limited data on the efficacy and outcomes of this treatment from studies undertaken to date.” Are you aware of multiple peer-reviewed studies by Dr Richard Burt, Dr Nikolai Pfender, Dr Riccardo Saccardi and others, published in journals such as the Lancet, JAMA and Current Treatment Options in Neurology, confirming the treatment “is able to completely halt disease activity in the majority of patients”?

2. Are you aware that Dr Colin Andrews has successfully used this treatment at Canberra Hospital on at least six patients with good results in all cases?

3. Why has Canberra Hospital stopped Dr Andrews offering this procedure?

4. Does Canberra Hospital accept Dr Andrews’ view that, given some people will die from the disease or be severely disabled, patients should be given the choice of giving an informed consent to such treatment? If not, why not?

5. Does Canberra Hospital accept Dr Andrews’ view that most MS patients whose condition is getting worse are happy to accept the risk?

6. Does Canberra Hospital accept that the data to date shows best results in those treated early?

7. Why did Canberra Hospital begin stem cell transplant therapy on a patient, Lauren Kish, and then withdraw it after her stem cells had been harvested and chemotherapy had already begun? [Please note that Ms Kish has been interviewed on this matter for our program and will forward you her written consent to waive any right to privacy in relation to it.]

8. Was Ms Kish told she would have to find another hospital to have her stem cells re-infused?

9. Was Ms Kish informed of the reason for this decision, and if so, what was the reason?

10. Was this action taken as a result of a decision by the hospital’s Ethics Committee?

11. If so, how ethical is it for an Ethics Committee to start treatment and then withdraw it mid-way through such a procedure?

12. Does Canberra Hospital believe it behaved in an acceptable way and provided the best possible medical care to Ms Kish?

 

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David Walker
7 years ago

Nick, for all I know it really was an act of bastardry, as 60 Minutes alleges. But I’m not sure it’s wise to be making judgments about a hospital’s decisions based mostly on Sixty Minutes reporting. And when you’re under attack from a powerful media institution with a fairly mixed reporting recorded, blanded-out responses are probably your best bet whether you are guilty or innnocent.