False hope and real living

The Quackometer has had some rather unpleasant emails following his criticism of the Burzynski clinic. The issue is that some people wanted to kindly raise money for a child with cancer to be treated there, when the evidence for the proffered interventions is questionable.

Other people have examined the science very well. There is something else bothering me, however. It’s to do with the aims of treatment, and how we spend our time when we know it is limited. I have been struck by this trial in the NEJM, which showed that people with lung cancer who had early palliative care had longer and better quality of lives together with less aggressive interventions. If this kind of care came in tablet form, it would be marketed as a miracle drug. Yet the aims of palliative care – symptom control – are often quite straightforward, based on good relationships between doctor and patient, and perhaps time consuming, but not that expensive.

I’m wondering about this especially because I sometimes think we don’t sit still enough. Chasing cures which don’t exist can distract us from the very important here and now. It might even, as per the NEJM paper, be of benefit to us to consider more about quality of life and less about an elusive cure.

This is something I often think about when patients have ‘last ditch’ chemotherapy. Is it for the best? I’m pretty sure that I personally would want to stop it, come home, drink as much of the best wine and eat the nicest chocolate I could manage, use all my finest bed linen, spread out with my kids at home, watch favourite films, invite as many visitors as I could manage, and use as much morphine as needed.

(Husband: consider that an advance directive.)

The problem is that stopping treatment can sound like giving up or giving in; our language of war on cancer is unhelpful and wrong. Quality of life can sometimes sound prissy. Yet  freeing ourselves from the rounds of hospital treatment can be liberating and good for us. Good care can happen without a cure.

 

14 Responses to “False hope and real living”

  1. The Jobbing Doctor November 27, 2011 at 7:16 am #

    Q. How do you know the patient is dead?
    A. The oncologist then decides to stop treatment.

  2. Mark Struthers November 27, 2011 at 7:28 am #

    I’m afraid I have little sympathy for the plight of the little ‘black duck’ that quacks for quackometer. Last January, Andy Lewis penned a pointless homeopathic jibe to the BMJ. The ‘duck’ does not impress … and nor does the BMJ.

    http://www.bmj.com/content/342/bmj.c5347?tab=responses

    Of course, Margaret might be interested in the contents of the rest of the response thread. I particularly recommend solicitor Gerry Ferguson’s contribution.

    PS. An excellent, thoughtful and inspiring post today. Thank you, Margaret.

  3. Kim holt November 27, 2011 at 9:34 am #

    This is about humanity. Let those at the end of life die in comfort and in peace with family around. Have those conversations.

  4. Doro Bechinger November 27, 2011 at 12:02 pm #

    Meanwhile I agree with some of sentiments expressed, please let’s not forget that a lot of people at the end of life do not have access to good quality palliative care. Many people will not be surrounded by loving family or friends, or have access to good wines and chocolate.
    Good palliative care should be available to everyone, but the reality is it isn’t.
    Additionally, there might be many reasons why somebody chooses to opt for a last ditch chemotherapy. Who am I to judge if the decision is the wrong one for them. I’m not in their shoes. They might have their own reasons for making that choice.

  5. anarchic teapot November 27, 2011 at 2:11 pm #

    Mr Struthers, is your comment with its reference to Gary Ferguson, a solicitor who apparently specialises in lawsuits against the medical profession, to be taken as a veiled threat in this context?

    For those unfamiliar with the BMJ article in question, the comments thread was rapidly taken over by anti-medical agitators, starting with the infamous Viera Scheibner.

  6. Badly Shaved Monkey November 27, 2011 at 3:06 pm #

    Mark Struthers, you say you have little sympathy for Andy Lewis. Please explain why.

    Do you wish to align yourself with the comments directed at Andy by someone purporting to represent Burzynski’s clinic?
    Does the manner in which Marc Stephens has conducted himself raise or lower your opinion of Burzynski’s clinic and the plausibility of the claims made for its treatments.

    It has been indicated to me that you are an MP. For the avoidance of doubt, the questions I have just posed are amenable to direct and succinct answers. I am not awfully keen to read the usual careful evasions that we are forced to endure in public discourse from our political leaders.

    Over to you…

  7. Badly Shaved Monkey November 27, 2011 at 3:16 pm #

    Ah, my mistake. Wires crossed somewhere. GP not MP. In that case, Dr Struthers I think we should expect direct, simple and scientifically competent answers from you.

  8. Paul Morgan November 27, 2011 at 5:10 pm #

    I fail to understand what relevance Mark Sturhers’ nasty, unpleasant comment has in relation to the issue in question. The post is in relation to the highly dubious cancer therapy being offered at the Burzynski clinic. Struthers’ position in support of homeopathy is well-known, a support he maintains despite the compelling evidence of lack of benefit over placebo. For this, he has attracted much criticism. I do not know his views on other health issues, so it would be unfair to launch an ad hominem attack. Andy Lewis is well-known for his skeptical views and blogs. He criticises homeopathy, justifiably in my opinion. Struthers clearly takes exception to this, but fails to present credible evidence to support his views. Instead, when Lewis criticises another form of “alternative” therapy and is attacked, Struthers seems to think it fair game to launch an ad hominem attack on him instead of trying to engage in a constructive debate using credible scientific evidence. I think readers will draw their own conclusions regarding the validity of Struthers’ opinion.

  9. Margaret McCartney
    margaretmccartney November 27, 2011 at 5:43 pm #

    I hate moderating: too time consuming for a start. But if there are, as Paul Morgan says, further ad hominems then I will be deleting and banning – life is too short otherwise.
    thanks Paul

  10. George Smith November 27, 2011 at 6:03 pm #

    I write as someone who knows very little about the MMR saga and nothing about the background to the story of this clinic or any of the characters involved or any of the people on this blog. This thread is getting rather ad hominem which detracts from the interesting and important issues involved.
    I do however know quite a lot about journalism and (therefore) something of the laws of libel.
    Mark Struthers has a point when he refers to the quality of Andy Lewis’s article. Whilst Lweis may well have be right about everything ,the article he has written is full of unsubstantiated allegations. In England it would be considered outrageous to say, in effect, that a man found ‘not guilty’ was anything other than innocent. It is absolutely fine, indeed essential, that people raise concerns about this sort of operation but those concerns should be fair minded, professional and rigorous. To be otherwise is counterproductive as it allows the party subject to scrutiny a robust defence against any criticism. In England you very quickly lay yourself open to libel actions (far less dangerous in the US).
    This is one of the problems of the blogosphere; so much of the criticism, however well intentioned, is badly researched and based on rumour and hearsay. Most of it does not come close to meeting the standards of professional journalism (and let’s face it that is a pretty low bar) in that few attempt to seek independent verification of their facts. These half researched views can then get amplified and hardened by second round commentators. Before long you have a witch hunt which sometimes is on to something and sometimes is not. If the cause is just then this aspect of the campaign has, most likely, and as in the MMR case (of which more anon) been counterproductive. If the cause is unjust then someone or some business can end up being badly and unfairly hurt. If a fraction of the stories about malicious comment on trip advisor are true this point is well illustrated. Responsible bloggers, I would suggest, and I guess you medics would like to think of yourselves as responsible, have a duty to check, indeed double check, their facts before launching potentially career ending and business ending attacks. If you are not rigorous and get sued, even though I am no fan of our current libel laws, I think you have only yourselves to blame. Not only that in many cases it will be right and proper that you do get sued.
    In the case of this clinic if you asked me to bet I would have little hesitation in choosing Mr Lewis’s side of the argument but you would be asking me to bet on a child’s life. Yes I know that goes with the territory in medicine but none of you I hope take such bets without ascertaining, if at all possible, all of the facts and balancing them appropriately.
    As regards MMR I remember paying some attention to the furore at the time as my own children were of the relevant age. The conclusion my wife and I came to was that Dr Wakefield was, almost certainly wrong, and that the risks of MMR had been ridiculously exaggerated. This seemed fairly obvious to us. Why then did so many believe Wakefield (or more precisely his followers)? This also seemed obvious to us and it came down to a matter of trust. The Chief Medical Officer and other government officials made several robust and aggressive statements about MMR and Wakefield. Much of the public took one look at this and said: “You know what, we don’t trust you. Maybe Dr Wakefield had a point. This could just be another government cover up”. Combining this with the, at times, hysterical and very personal attacks of many in the medical profession it is no wonder that so many refused to believe the official line. An editor of one of the major broadsheet newspapers once told me how he allowed a journalist to write what he thought was a fairly anodyne piece on Wakefield. The article was factual, inconclusive and designed to be uncontroversial. He told me however that he had never in his entire career been subject to so much abuse than that which had resulted from this article. The pressure from senior medical and DOH figures on his board was immense. They wanted him fired and, for a while, he felt that it was touch and go.
    I am quite prepared to believe that Dr Wakefield deserves censure for, and was the cause of, many not giving the MMR to their children. However I think the greater blame probably lies with the then Government and with elements of the medical profession whose vicious and unnecessary attacks on Dr Wakefield scared off so many parents. In a nutshell the fall in the level of MMR inoculations was probably due more to a fall in the public’s trust in the medical establishment than to Dr Wakefield’s research conclusions.
    I am not in a position to comment on the details of Mr Fergusson’s letter but his general points are well made. It is against natural justice to condemn people without all the evidence.
    Frederic the Great was once heard to exclaim, on seeing his guard hesitate,”Fools would you live forever?”. I am not sure I would be particularly keen to be front row in an 18th Century infantry battle but it is indeed foolish to try and live forever. Dr McCartney’s blog is most thought provoking, compassionate and important. We should all listen to her.

  11. Mark Struthers November 27, 2011 at 6:36 pm #

    Ah, I see the ‘black duck Mafioso’ are out in force on a Sunday, quacking furiously.

    @Monkey business: my linked response to the BMJ explains my position with regards to ‘le petit canard noir’. As it happens, my sympathies lie with Andrew Wakefield who has been treated outrageously by the establishment, medical or otherwise … and the blogging band of ‘bad-science’ mafia. You may remember that McScience guru, Dr Ben Goldacre, was ‘amused’ that Merck, a major player in the vaccine-industrial-complex, intended to “seek out and destroy” doctors who threatened vaccine policy and profit.

    http://www.guardian.co.uk/commentisfree/2009/may/09/bad-science-medical-journals-companies

    By the way, has anyone noticed the online revamp at the BMJ? It’s a real dog’s dinner. The new contents page does not list authors, so I can’t pick out Margaret’s little gems. Rapid responses can’t be searched, but responses can be subjected to the daftest rating system imaginable. The whole thing is a disgrace. Of course, the bmj.com editor may simply be incompetent. However, I am aware that a very nasty malignancy is metastasising virulently through the journal ….

  12. Badly Shaved Monkey November 27, 2011 at 10:08 pm #

    Dr Struthers, that BMJ Rapid Response of yours does not bear in the slightest on the current issue, which is a bizarrely intemperate and intimidatory attack on Andy Lewis following his publication of well-argued criticism and questioning of treatment provided by the Burzynski Clinic and its methods and ethics

    I asked you three simple questions. I will repeat them.

    You say you have little sympathy for Andy Lewis. Please explain why.

    Do you wish to align yourself with the comments directed at Andy by someone purporting to represent Burzynski’s clinic?
    Does the manner in which Marc Stephens has conducted himself raise or lower your opinion of Burzynski’s clinic and the plausibility of the claims made for its treatments?

    Back to you. Please show the simple common courtesy of answering relevantly and politely.

  13. Badly Shaved Monkey November 28, 2011 at 8:25 pm #

    It seems that Mark Struthers has left the building. I do wish people like him would stick around for a proper forensic dismantling of their opinions.

  14. Margaret McCartney
    margaretmccartney November 29, 2011 at 4:34 pm #

    I have taken some posts down because they were very offensive.
    I am not entering into correspondence with anyone over this.
    Margaret McCartney

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