Around every tumour there's a personBMJ 1998; 316 doi: https://doi.org/10.1136/bmj.316.7130.560a (Published 14 February 1998) Cite this as: BMJ 1998;316:560
Mr A has a nasty carcinoma of the bladder for which the standard recommended treatment was radical dissection of bladder, prostate, and both testicles. There is, however, nothing standard about Mr A.
Mr A, who is in his mid 40s, registered with us over a year ago. A local practice had jettisoned him. Although this is conjecture, I think that it was because of his demanding nature. He came to us requesting benzodiazepines, which is never a good start to a long term doctor and patient relationship. He is Spanish, and his long term partner comes from the Philippines. Both are very intelligent and articulate.
His main complaints at the outset were that the pain of the carcinoma was relentless and that every time he urinated it “was like passing razor blades, except worse.” He hated the tumour. What he hated even more, however, was the fact that everybody—or at least nearly every doctor—pushed him towards the inevitable radical manoeuvre of removing most if not all of his urogenital organs. He was not having any of it.
He was duly referred to the local teaching hospital, having previously attended a central London urology unit. But the staff seemed to support the decision of the first teaching hospital without seeing him. In other words, it was castration or nothing. Meanwhile the carcinoma was the size of a large grapefruit. What was to be done?
And so began the most difficult aspect of our relationship so far. Mr A had been receiving all types of advice and information, ideas, and expectations about other forms of treatment. He tried shark's cartilage, multiple vitamins, hyperbaric oxygen, and various assortments of multivitamins and micro-minerals. He wanted me to help him obtain some of these on the NHS, which I did occasionally. Nevertheless, I did stop at some of his requests. I could not bring myself to order 24 hour oxygen for this man in the absence of the usual indications. I also declined his request for measurements of magnesium and other minerals on the basis that they would be very costly and I could see no foreseeable benefit.
It was at this time that Mr A asked for an extracontractual referral, something that I had been dreading. To make matters worse he decided that the referral should be outside Britain, though thankfully within Europe. And the reason? He wanted to see a specialist oncologist who apparently was one of the few in the world willing to treat the tumour with aggressive chemotherapy. The quest to get him the extracontractual referral proved to be a momentous struggle. The process seemed to pit doctor against doctor and administrator against administrator.
We had to persuade the local authority that this was definitely an option, and Mr A had to obtain a private referral from an oncologist in Britain to verify that the treatment in Germany was genuinely valid. Thank heavens for modern forms of communication as a stream of letters was faxed and dispatched over a week or so. I had to persuade the extracontractual referral unit of the local health commission that I supported the action, while liaising with the private doctor who completed the referral to Germany.
It is now four months on. Mr A has had the chemotherapy. He has returned looking ill, but all his organs are intact. And he has thanked me—and the many members of the practice—for supporting his many referrals, including the ultimate one to Germany. He has said on more than one occasion that the surgeons here think about him in terms of the grapefruit sized tumour. He constantly reminds them that “there is always a person who surrounds the tumour” and who must never be forgotten.
What is the moral of the story? I am not sure, except that he is—and not was—one of the most challenging patients I have ever dealt with. He knows what he wants most of the time. But he values the opinion of a general clinician who knows that there is more to a person that his or her metastatic growth.
I know that I cannot give him everything he desires. No matter how strong his feelings are about certain requirements, I know that what governs many if not all of my decisions about him is the first and often forgotten rule of medical ethics—“first do no harm.” Of course, at times his autonomy conflicts with this rule, as do so many dilemmas which compose a general practitioner's daily work. Ultimately, however, it is Mr A's autonomy which predominates, and perhaps this is the main reason why he remains alive today. I wish him well.