19.Ethics of medical information

During my medical career, the handling of medical information has undergone major changes. Hippocrates had said, that patients should not be given any information: the physician knew best, and the patient must trust him [invariably male, of course]. In the 1950s, patients were still regarded as idiots who should not know anything. In particular, they must not be told if they had cancer.

Our brilliant professor of paediatrics (Manchester trained) had vomited blood - it was due to a gastric carcinoma. He had surgery - and was told that it was 'an ulcer'. He was a very thin and cynical man - just the sort of person to develop a duodenal ulcer. That is what his all colleague told him - he should wait for recovery from the operation. While he slowly 'recovered', he developed jaundice - from hepatic secondaries, or perhaps cancer obstructing his bile duct. The surgeon knew that it was hopeless. So he was told that it was due to viral hepatitis, from one of the blood transfusions. Bad luck - hepatitis B was not considered as ominous as it is now. He slowly deteriorated and died - apparently unaware of the diagnosis. But perhaps he did know it was cancer, and just behaved to avoid the unpleasant and futile conversation on his hopeless situation.

But things were beginning to change. The chest surgeon, professor Melvitski, preached telling patients the truth.
Incidentally, he was the first to perform a closed mitral valvotomy in Jerusalem, by inserting his finger with a blade strapped to it, through a purse-string ligature prepared beforehand in the left atrium, and then pulling it shut. He told us candidly how anxious he was when performing this operation. His method saved the lives of many cardiac patients with mitral stenosis - those were the days of much rheumatic fever - progressing to heart disease. He later died in a crashed El Al plane sabotaged on its way back to Israel. Years earlier, he had saved the septic leg of my brother Michael after a road accident - that was before antibiotics.

In his lecture, Melvitski described to us a man, whose diagnosis of cancer was kept secret from him for some months, by telling him various lies to explain his deterioration. Finally he realized that he was actually dying, and he confronted his doctor. They had to admit the truth. "What a pity", the poor man said. "For years, I had been writing an important book to record my life's work. It needed the final chapter, and a short revision. But you promised me recovery, so I waited. Now it is too late." This did impress us.

But it was emotionally hard to tell patents, and it was contrary to tradition. I was looking after a good friend of my parents, a dental nurse, whose breast cancer had spread, despite having even her adrenals removed - those were desperate times. She fractured her femoral neck through a secondary deposit and it was pinned. On my next visit to her bed, she said, "Now starts my struggle with death." To my regret, instead of talking it over honestly with her, perhaps reassuring her that we could deal with her pain and distress, I just denied that the fracture was anything but an accident. The term 'palliative care' did not exist then.

I wished to tell patients the truth. But I had heard of cases, where this news destroyed the person - sometimes leading to suicide. In rheumatology, I found cancer two or 3 times per year, in a person sent for advice on 'aches and pains'. These patient often came with their spouse, who often guessed a sinister cause when the GP hadn't. When I suspected cancer, I created the opportunity to discuss the possibility of informing the patient, by sending the patient for 'another blood test', etc. and getting the nurse to fetch the spouse for a quick chat.

At the next appointment, I had the results of the investigations, and the couple had had a chance to discuss the possibilities. Invariably, they wanted the truth - but see below - about Mrs S.

The same secrecy, the keeping of information from the patient, applied also to medication. Names were not revealed on the containers - just 'the tablets' or 'the mixture', and how to take it. Often, it was just a placebo, a sham substance: vitamin B complex was the commonest standard.
But if a person consulted a different doctor, or attended the casualty department, all the information that they could give was the colour and shape of the pills. The 'monthly index of medical specialties' included at the end several pages of actual-size pictures classified by shape, colour and size. This usually facilitated identification.
By regulation, the pharmacist was not allowed to write the name of the medication on the container either, unless the prescription included the instruction 'proper name'. But for years, now, names are routinely put on the containers. A good U-turn.

As a final year student, I was observing a gynaecologist in his out-patient clinic. He reassured the anxious woman that after his full assessment and investigations he could reassure her, that there was no disease present. (When I myself said so, I always had nightmares, that the patient would go out and drop dead... Fortunately, this never happened!) Then, for reassurance, the gynecologist began to write a prescription that would 'make her feel better'. You've guessed it: "Vit. B. Complex i b.d. 14 days"
But this was in Jerusalem - where people are more outspoken. "Doctor, why do I need medication, if there is nothing wrong with me?" Dr Saltzberger (he later operated successfully on Judith - he is dead now) nodded, agreed, and tore up the prescription. I resolved never to forget this - and I haven't.

From this episode, and from my frustrating experiences in casualty, attempting to identify 'them little white pills', especially when dealing with drug overdoses, I quickly resolved always to write 'proper name' on my prescriptions - and never to use placebos. I would not accept a 'placebo treatment' from my plumber, or from my car mechanic. It is eminently dishonest. It is only sustained by paternalistic physicians who act like god, or as a quick short-cut, instead of a lengthy explanation and reassurance.

Physiotherapy is also used sometimes as a placebo, even when there is absolutely no scientific or experimental evidence for its effectiveness. Patients will often get better while having physiotherapy - not because of it! I have very occasionally sent a patient for physiotherapy for another purpose: to find out some other problems that were possibly aggravating their complaint. Patients were less inhibited by the therapist - and sometimes the information was very useful to me in helping the patient.

I had written a short article about my opinion, on the lack of scientific proof for the effectiveness of physiotherapy. It was published in 'Therapy', I think, and resulted in a flood of indignant letters to the editor. They all protested bitterly, that I had claimed that physiotherapy was 'useless' - whereas I had only complained about the absence of research. There was no point in arguing.

But in my hospital work, I had made a point of being on friendly terms with the therapists. I took my mid-clinic coffee break in the therapists' staff room, which gave us an excellent opportunity for informal discussions about patients and their problems - mine and others'. Incidentally, the array of unwashed mugs that were left strewn around by the all-female staff was astounding. After I found my own mug on several occasions used and dirty, I took it back with me to my office.

The history of Mrs S is different.

Over coffee, one of the physios in the staff room showed me a request from a local GP. Mrs S was in her late 70s. She had 'widespread arthritis' - could she have physiotherapy please. The physio felt that at this age, the request was unrealistic: could she [or I] refuse the GP's request?
A letter from Mrs S was attached. In the hope and expectation of receiving treatment, she asked to be offered afternoon appointments, because in the morning she was very immobile. That gave me the diagnosis: Mrs S probably had Polymyalgia, and not age-related Osteoarthritis. So I posted her a request for the blood test for an ESR [red cell sedimentation rate] - which is diagnostic - and an early appointment after the result was back.
The ESR was very high. QED. I saw Mrs S, explained my suspicion, and sent her home with a supply of Prednisolone tablets.
A week later she returned, quite convinced that I was god. Her 'arthritis' had melted away and she felt like a totally new woman. Experience with many local GPs had taught me to keep managing this condition myself. Most GPs are not very experienced in Rheumatology. And they attend the weekly lunchtime meetings for the food and to 'sign on'.
Over the following months, as we gradually and carefully tailed off the steroids, we became good friends. Finally she was 'cured', and off steroids. Each Christmas she sent me a card.

Then, a few years later, she wrote to ask me, whether I could resume her care. She felt very bad and she did not know why. Her medical notes gave the answer: she was under the care of one of my favourite surgical colleagues, who had found malignant melanoma - and it was spreading. This was outside my field, and I reassured Mrs S that she was in excellent hands, and that I could not just take over her care.
Her notes identified her next of kin. So I wrote to the daughter to explain, that perhaps at the age of over 80, Mrs S should actually know her diagnosis, because her uncertainty was her worst problem. The reply came by return: on no account was her mother to be told that she had cancer!

It was only some 15 years later that I first read in the BMJ about the primary responsibility of a doctor to their patient - and not to the relatives. Throughout my career, and at the time of Mrs S's illness, I mistakenly thought that the daughter's views were paramount. As she was now not under my care for the melanoma, it was not up to me anyway. But I could have tried to convince my surgical colleague to tell the truth to Mrs S.

As she deteriorated, she was admitted for terminal care. I went to see her on the surgical ward - her mind was still clear. As she saw me approaching, she slipped on her wig... and again asked me to take over her care: why was she not getting better? She could no longer eat or drink - but I was told by the nurse that they were about to set up an intravenous infusion.
I phoned her daughter: Her mother was dying. But nurses, especially Catholics, want to preserve and extend life. She must come and tell the staff explicitly, that they should not prolong her mother's suffering. Later I heard, that this had in fact been heeded by her.

In reply to my letter of condolence - Mrs S had become a good friend - the daughter wrote, how proud she was, that her mother had not known that she had cancer.
I reckon that it was the daughter, who had been unable to face the diagnosis.