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Neon Roberts case: seriously ill patients need empathy and facts Neon Roberts case: seriously ill patients need empathy and facts
(35 minutes later)
Who would not feel for the family of a child suffering from a serious illness, say cancer? Initially, the parents decide to go ahead with the proposed treatment and the child seems to fully recover from the horrors of cancer and its treatments; but then the experts insist that an even more aggressive therapy is necessary to save the child's life. Even this course of action offers no guarantee for a cure and will almost certainly cause severe side-effects.Who would not feel for the family of a child suffering from a serious illness, say cancer? Initially, the parents decide to go ahead with the proposed treatment and the child seems to fully recover from the horrors of cancer and its treatments; but then the experts insist that an even more aggressive therapy is necessary to save the child's life. Even this course of action offers no guarantee for a cure and will almost certainly cause severe side-effects.
The family is thrown into emotional turmoil; there are no certainties just probabilities, and the odds are getting worse every day they hesitate. In such a situation, who would not ask whether there are alternatives?The family is thrown into emotional turmoil; there are no certainties just probabilities, and the odds are getting worse every day they hesitate. In such a situation, who would not ask whether there are alternatives?
Sure enough, the mother who intuitively prefers alternative treatments over conventional ones finds dozens of websites which offer a cure without nasty side-effects. She talks to charismatic homeopaths who confirm that their treatments are risk-free and effective.Sure enough, the mother who intuitively prefers alternative treatments over conventional ones finds dozens of websites which offer a cure without nasty side-effects. She talks to charismatic homeopaths who confirm that their treatments are risk-free and effective.
Of course, the mother wants the best for her child and she decides to discuss the options with her medical team who are less than charismatic, again stress that there is no time to lose and point out that homeopathy is no option. The mother is even more confused and stressed to breaking point; the child's father wants to follow the advice of the oncologists, but the mother is not sure. The medical team are pressing her to give informed consent and, at one stage during these frantic days, she finally loses trust in them.Of course, the mother wants the best for her child and she decides to discuss the options with her medical team who are less than charismatic, again stress that there is no time to lose and point out that homeopathy is no option. The mother is even more confused and stressed to breaking point; the child's father wants to follow the advice of the oncologists, but the mother is not sure. The medical team are pressing her to give informed consent and, at one stage during these frantic days, she finally loses trust in them.
Given the choice between the uncertainties as well as the horrendous risks of conventional treatment on the one side, and the prospect of natural, holistic and harmless homeopathy on the other side, she is tempted to choose the latter, escapes the pressure by taking her child away in order to have time to think. But sadly, time is not available; in order to give the child a fighting chance, conventional treatment must not be delayed any further. Eventually the legal system kicks in and a judge rules that, against the will of the mother, treatment must commence.Given the choice between the uncertainties as well as the horrendous risks of conventional treatment on the one side, and the prospect of natural, holistic and harmless homeopathy on the other side, she is tempted to choose the latter, escapes the pressure by taking her child away in order to have time to think. But sadly, time is not available; in order to give the child a fighting chance, conventional treatment must not be delayed any further. Eventually the legal system kicks in and a judge rules that, against the will of the mother, treatment must commence.
This hypothetical scenario is deliberately similar to the recently reported case of Neon Roberts – similar, but certainly not identical. In particular I do not know whether Neon's mother favours homeopathy for her son. Doctors such as myself do not like to comment on cases without full knowledge of all the facts; and I certainly do not have all the details. Such tragedies are invariably complex and dozens of circumstances may complicate the situation even further.This hypothetical scenario is deliberately similar to the recently reported case of Neon Roberts – similar, but certainly not identical. In particular I do not know whether Neon's mother favours homeopathy for her son. Doctors such as myself do not like to comment on cases without full knowledge of all the facts; and I certainly do not have all the details. Such tragedies are invariably complex and dozens of circumstances may complicate the situation even further.
In my hypothetical scenario, the mother lost trust in her medical team and was thus unable to consent to the treatment they proposed. It would be difficult to blame the mother for this debacle or not feel empathy for her desperation. It would be equally difficult not feel anger with the circumstances that caused the confusion.In my hypothetical scenario, the mother lost trust in her medical team and was thus unable to consent to the treatment they proposed. It would be difficult to blame the mother for this debacle or not feel empathy for her desperation. It would be equally difficult not feel anger with the circumstances that caused the confusion.
At the heart of this hypothetical scenario are the claims of some alternative practitioners to be able to cure cancer. The information the mother is likely to have found wasnot based on reliable evidence, that was irresponsible and even criminal according to the English Cancer Act 1939. Yet it was all too tempting to believe it. The more she did start to believe it, the more difficult it became to deal with the advice and pressure from the medical team. The misinformation about what alternative medicine might achieve, and the inability of the oncologists to explain the situation in full detail are the main causes for the breakdown of trust. In turn, this breakdown turned out to be lifethreatening for the child. At the heart of this hypothetical scenario are the claims of some alternative practitioners to be able to cure cancer. The information the mother is likely to have found was not based on reliable evidence; it was irresponsible and even criminal according to the English Cancer Act 1939. Yet it was all too tempting to believe it. The more she did start to believe it, the more difficult it became to deal with the advice and pressure from the medical team. The misinformation about what alternative medicine might achieve, and the inability of the oncologists to explain the situation in full detail are the main causes for the breakdown of trust. In turn, this breakdown turned out to be lifethreatening for the child.
What follows seems simple: as misinformation on the internet is virtually impossible to control, action must focus on the behaviour of healthcare professionals which should be empathetic yet evidence-based: conventional practitioners should talk about the value or otherwise of alternative medicine openly and with compassion; alternative practitioners must refrain from making unsubstantiated claims. Unfortunately, this is easier said than done.What follows seems simple: as misinformation on the internet is virtually impossible to control, action must focus on the behaviour of healthcare professionals which should be empathetic yet evidence-based: conventional practitioners should talk about the value or otherwise of alternative medicine openly and with compassion; alternative practitioners must refrain from making unsubstantiated claims. Unfortunately, this is easier said than done.