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In this essay I would like to address two new issues that have not yet been adequately aired. First I would like to consider the likely motivations of those who sponsored or have supported the “Saatchi” bill (MIB) and then look again at the false premise upon which so much time has been spent in Westminster, the news media, blogosphere and the twitter-sphere. In starting out on the motivations behind the MIB I will not touch on potential conflict of interests, firstly as it is something of a distraction and secondly because I think it is unjust to all those sponsors and supporters, who like me, have lost a loved one to a terrible disease with inadequate palliative care.
What are the genuine motivations of the supporters of the MIB?
Someone who has lost a loved one to a terrible disease, who had to endure a cruel death, goes through a roller coaster ride of emotional responses. Eventually most come to terms with the tragedy and the mourning period is in due course replaced by an acceptance of the loss and a slow return to normal life. In some the mourning period lasts a lifetime almost like a pathological obsession as well illustrated by Queen Victoria. Yet others have a different response where mourning is replaced by anger and a search for others to blame. I have nothing but deep sympathy for these people as I have been in that “bad place” myself whilst standing by, helplessly watching my dear mother die prematurely, in uncontrolled pain from skeletal metastases from carcinoma of the breast. To add insult to injury, the primitive chemotherapy regimen she endured, added nothing to her life except nausea, vomiting and alopecia. She had always prided herself on her long and glossy black hair that she wore as a chignon but that was replaced by a paisley scarf that kept slipping to reveal her baldness. I will describe how I dealt with this at the end of this piece.
A second motivation, commonplace amongst the scientifically illiterate, is the idea that their loved one might have been saved by a miracle cure. This is often seen amongst the well off who have always been in the position of affording anything their heart desired. They are easy fodder for the snake oil salesmen. Related to this is the popular myth or fairy story about a medical maverick who discovers a cure for cancer in the Amazonian jungle only to be frustrated in his humanistic and self sacrificing endeavor by Big Pharma, who feel threatened by the discovery of a cheap and “natural” alternative to their hugely expensive market leaders. A good example of this genre is the film “The Medicine Man”. I have less sympathy with such people as there is a well-proven cure for scientific illiteracy and that is known as an all rounded education that combines both science and the humanities. If their education failed to cover the two pillars of wisdom that supports our culture, then there’s a fault in our system.
Innovation vs improvisation
The daily practice of medicine can be looked upon in three ways: “standard care”, “improvisation” and “innovation”. My dictionary defines Innovation as “a new idea, device or process that can be viewed as the application of better solutions that meet new requirements or existing problems”. In medical research we have a pattern of governance in place that protects patients as well as doctors during episodes of innovation. All clinical research has to negotiate two hurdles before the study can be launched. First of all any meaningful project needs resources and that means satisfying the grants committee that the study is rational and organized with robust methodology sufficient to produce a reliable result, that might either support or refute the underlying hypothetical conjectures. Secondly the clinical scientist has to satisfy an independent committee of the ethical probity of the work and that the patient provides informed consent. This committee would normally reject a proposal that fell at the first hurdle on the principle that flawed science is an unethical abuse of human subjects.
If we choose to define the legal principles of the “Bolam” and “Bolitho” tests, as meaning that a judge will be satisfied that bodies of expert opinion would accept the new treatment as 'logically defensible’, then in effect the doctor enjoys prospective protection from litigation already, whilst the patient has been protected by the ethical scrutiny of the independent expert committee. Perhaps this is why there are no recorded examples of litigation by patients in a research program under current governance unless the clinician was negligent in his delivery of one or other of the treatments being compared.
Improvisation is defined as “the process of devising a solution to a requirement by making-do, in the absence of resources that might be expected to produce a solution”.
In real life practice of medicine and surgery this is commonplace. As a surgeon I often had to face a crisis mid operation, where there were no textbook guides on how to proceed so I had to improvise to save the patient’s life or limb. To an extent the recent high profile cases of Ebola might be the equivalent of emergency medical improvisation in practice. We act in good faith and if things go wrong then we have to face the Bolam and Bolitho tests with expert witnesses advising the courts.
All along we’ve allowed ourselves to think we are discussing a medical innovation bill when in fact we’ve been discussing a medical improvisation bill, with the latter prospectively protecting the doctor from litigation whilst removing the patient’s rights of redress.
How do we cope with the fact that we all suffer from an incurable disease?
All of us, including the proponents and opponents of the bill, know someone they held dear, who died of an incurable disease and all of us face that inevitable outcome.
The best we can hope for our loved ones and ourselves is that our passing will be dignified, with adequate symptom control and ideally in the comfort of our own homes.
When I held vigil together with other members of the family on the night my mother died, I was plagued by a complex set of emotions. I felt guilty, because as a young doctor I had insufficient knowledge to deal with her suffering. I felt angry with her doctors, allowing such uncontrolled suffering and I felt angry at some amorphous embodiment of “cancer the killer”. After her death I entered a natural period of mourning but unlike most people I had the “advantage” of coping with my anger by trying to avenge my mother’s death by chasing the demon responsible. Her experience galvanized me to try and discover more effective and less toxic options for the disease that carried her away, and I can claim some modest success in this field. However the last point I want to make is that everyone can join this crusade by identifying the real villain and sharing my “advantage”. This can be done in a number of ways. Firstly cure your own scientific illiteracy by studying the rudiments of the philosophy of science. This is easy, as you don’t have to learn facts but simply learn a new way of thinking.
Secondly, if you feel motivated and wish to campaign, then campaign first and foremost for a merciful death for us all.
Finally, if you are rich and powerful, then work with us clinical scientists to deal with the real obstacles to progress and support the medical charities that are searching for prolongation of a good quality of life for all those “incurable” diseases that we all will face when our time comes for that visit of the grim reaper.