The story of Allan Smith, a 56-year-old victim of swine flu (H1N1 virus infection) who was admitted to Auckland Intensive Care Unit suffering from intractable pneumonia, raises major ethical issues.
His family were told that the considered view of the specialists taking care of him was that he was going to die and that they should remove him from the (ECMO) life-support system that he had been on for 20 days and that was keeping him alive.
He had a "whiteout" pneumonia of the lungs - i.e. no visible air entry on X-ray. The family demurred, asking that he be treated with mega doses of vitamin C. The specialists and the entire ICU team resisted, arguing that it could not possibly do him any good and to placate the family they administered him two whacking (25g) doses.
From that time he began to improve, despite having received a further diagnosis of hairy cell leukaemia.
Mr Smith recovered so dramatically that he came off life support completely after three days. The vitamin C was stopped. His health immediately deteriorated, but the consultant in charge refused to give it. After a heated meeting, the vitamin C was restarted but only at low doses (2g per day).
Again he slowly began to recover. He was then moved to Waikato Hospital in an induced coma and again the doctors stopped the vitamin C.
The family brought in a lawyer, Mai Chen, who warned Waikato Hospital that they were in danger of being in breach of the Code of Health and Disability Services Consumers' Rights (right 7).
Waikato Hospital then agreed to resume the treatment (at 2g per day) and again he slowly recovered but not until he received high-dose oral vitamin C did he start a rapid recovery.
After nine weeks in a coma he was woken and expected to start a long three-month journey to full recovery. He walked out of hospital in 14 days with his swine flu and all signs of leukaemia gone.
The ethical issues go to the heart of consumers' rights to health care. Right 7 of the code allows patients to make informed choices about treatment and exercise a right to informed refusal. As normally understood, these are choices between treatments offered by doctors (or providers), and patients do not have the right to demand services.
The conditions surrounding such a choice or refusal mean that the doctor should always act in accordance with a reasonable body of medical opinion (where that might not be a majority of medical opinion). It is not clear how unconventional the opinion can be and still be considered reasonable. It is also not clear the extent to which a patient or those making decisions for them can seek and have implemented a highly controversial regimen even though any provider (such as Waikato Hospital) can decline to offer treatments which would unreasonably burden their available resources.
When a treatment request is not from a patient but from another person (even next of kin) the doctor has the right to decide whether the request is in accordance with the best interests of the patient as they would be judged by a reasonable health care service provider, and it not bound to follow just any such request.
That having been said, it would be a very hardened and doctrinaire provider (even if that person was a consultant or other august personage of almost unimaginable gravitas such as a professor of medicine) who would completely discard a family's pleas backed up by apparently persuasive anecdotal evidence. In such a case, the tried and tested Hippocratic method is to attend to the individual case history rather than being blinded by scientific theory.
In the present case, bloody-minded, expert opinion is on even
more shaky ground as there is not only effectively an "N of 1
ABA" trial (a trial of the application and removal of a
therapy in a single patient in which there appears to be
consequential variation of the patient's severity of disease)
but also a body of quasi-scienti-fic literature purporting to
show an effect of vitamin C against viruses such as the H1N1
virus.
We are, therefore, on disputed turf, medico-legally and ethically speaking. Current orthodoxy is against a relatively untried or unscientific treatment and seems to have a body of theory to back its disbelief. But there is some reason to think that in this patient, this disease process at this particular time was responding to a treatment in a way we do not understand.
Only an arrogant and high-handed insistence on the rectitude of current medical dogma would dismiss the observations as, in principle, misleading.
Here, at last, we come to something with medico-legal resonance because arrogant and high-handed treatment of patients is reprehensible in anybody's book. The trouble is that the prohibition on acting that way does not normally extend to being a bit sniffy about expert medical and scientific knowledge of patho-physiology and therapeutics. In fact, these are normally considered the proper domain of expertise.
So, in the end, what can one say? Perhaps, like Pooh checking that the jar is full of honey all the way down (just in case someone has put some cheese at the bottom), we can only dedicate ourselves to looking at all the evidence.
At the end of that search, however, like the White Queen, we might have to get into practice (half an hour a day) at believing impossible things.
• Grant Gillett is a professor of medical ethics at the University of Otago Bioethics Centre.