Informed consent - a patient's right to know

Being operated on felt like having boiling water thrown on her and having her skin torn apart. The dose of local anaesthetic she had been given was not sufficient to mask the pain which racked her. Seeing this, the attendant nurse advised her to ask her consultant to increase the dose. The reply was that this could not be done as she had been given the limit and any further anaesthetic would damage her heart. Excruciatingly painful surgery continued.

The patient was a woman in her 50s who had been diagnosed with melanoma on her left thigh. Being told you have cancer - the big "C" - is a terrifying prospect. Being treated with less than the requisite amount of sensitivity by your surgeon and not being told beforehand of the medical treatments and options available to you, makes it infinitely worse. To be fobbed off repeatedly by the body which regulates the medical profession adds insult to injury.

This is the story of a woman who has been battling on two fronts for several months. Besides fighting the invading cancerous cells, she has been trying to get the Medical Council to take some form of action so that her distressing experience will not be one which future patients will have to undergo.

Her saga began three years ago following an examination of a mole on her thigh by her dermatologist. A biopsy was carried out, revealing it to be malignant. Her dermatologist forwarded the laboratory reports to a consultant surgeon at a private hospital. It was decided that a more extensive excision was considered to be opportune. Accordingly, the woman was admitted to the private hospital. She was not insured and was paying all the fees necessary for the medical intervention and hospital stay.

The surgeon who was to operate had not met her beforehand. Their first and only pre-operation consultation occurred some 20 minutes after she was admitted to hospital. It was a very brief and superficial meeting. The consultant dropped in to her hospital room with his wife and child. Ignoring the fact that she felt distinctly uncomfortable at having to be seen by two complete strangers, he talked to her for some quarter of an hour.

He did not offer her the option of local or general anaesthetic. He did not explain any of the possible side-effects of the operation. These were not inconsiderable, ranging from lymphoedema (swelling of the limbs caused by damage to the lymphatic system) and deep vein thrombosis.

No information about her post-operative care plan was provided. In simple terms, she was not told whether she would need crutches or how to manage and take care of her leg until her next meeting with him. Most importantly, the patient was not told of another treatment option available to her abroad.

This option would be that of sentinel node biopsy. It is a technique which helps determine if a cancer has spread, or is contained locally. By retrieving the "sentinel node", the first node to drain the area of the cancer, and analysing it, surgeons can find out if the cancer has spread while leaving unaffected nodes behind to continue the important job of draining fluids. Although the jury is still out about this procedure, it would have been fitting for her to be informed of this possibility. She was not, and surgery went ahead.

After the operation, lymphoedema resulted in the patient's calf and ankle swelling, with significant physical and psychological effects upon her. The surgeon dismissed this as a temporary condition and did not advise as to how it could be allievated in any manner. The swelling did not stop. The summer heat made it worse. Eventually it was diagnosed (by another doctor) as being permanent and special stockings and a mild diuretic prescribed.

A few appointments were made with the surgeon who had performed the operation. During one of these he admitted that general anaesthetic would have appeared to be the better option. The patient's main concern in this post-operative stage, was to inquire about the treatment for her lymphoedema. She felt that her worries were not being taken seriously and informed him that she would be consulting another specialist.

She also requested that the notes pertinent to her case (not hospital records) and which had been drawn up by the consultant, be forwarded to her, so that she could pass them on to future medical practitioners who would be seeing her. These were not forthcoming.

Most people would have stopped there. They would have switched to another doctor and hoped for the best. But this particular patient didn't. Although she acknowledged that the consultant had performed the operation in a correct manner, she was convinced that informed consent was missing. The consultant should have explained why that particular procedure was being selected and what risks it would entail, even if these were minimal. This had not happened.

The patient wrote to the Medical Council, presenting a sworn affidavit with her version of events and her complaints which related to the lack of informed consent and the non-provision of her records.

The Medical Council concluded that it was totally satisfied with the explanation provided by the consultant and that it would not be pursuing the case further. It did not comment as to whether it considered the complaint raised to be frivolous or not. Requests to the Commissioner of Data Protection for the release of the patient's records as required by law have proved to be equally futile.

It would seem that the matter has been closed and forgotten by all the authorities concerned. But not for the patient. Her quest goes on. She wants to know why she was not told of what would happen to her after the operation, why she was not told of the medical alternatives which were available to her, allowing her to weigh her options carefully.

The trivialisation of the informed consent procedure has alerted her to the fact that other patients in her position might also be denied the right to know. Information regarding one's medical options is not sympathetic chat which constitutes good bedside manners - it is a vital element of the doctor-patient relationship and one which the essential element of trust is based.

Patients who are deprived of such information are put in a position where they are deprived of the dignity of choice and control over their medical well-being - the ultimate value. In this respect, great changes are warranted. Patients should concern themselves with acquiring the most comprehensive overview of their medical options, doctors should be willing and freely available to provide such information. And the Medical Council should guarantee that this interaction takes place in the most transparent and efficient manner.

In this respect a Patients' Charter would go a long way towards helping patients to navigate through the complex areas of professional responsibilities and their own rights. An updated Council Website, in line with the UK General Medical Council's Website, would also be instrumental in improving accessibility to the Council. Only if such measures are implemented can trust in the medical profession and its self-regulating system be maintained.