MEDICAL MATTERS:Doctors must accept decisions made by patients, writes MUIRIS HOUSTON
STEVE JOBS, the late, great innovator and cofounder of Apple Computers, did not readily accept the medical status quo when he was diagnosed with cancer of the pancreas in October 2003. He made a decision to postpone surgery and to rely instead on a cocktail of fruit juices, acupuncture and herbal remedies for the first nine months after diagnosis.
His biographer has reported the treatment regime was based on rigorous internet research by Jobs, probably reflecting his business modus operandi of thinking outside the box at all times. And while it may seem foolhardy from this remove, with claims that he lost an opportunity of complete cure by forgoing immediate surgery, Jobs’s decision can be understood when some other factors are taken into account.
He did not have the more common and deadlier version of pancreatic cancer; he was diagnosed with a rare form of the disease – a neuroendocrine tumour that grows more slowly and makes up about 5 per cent of pancreatic cancers. It affects the insulin-producing cells in the gland, while the more usual type affects the cells in the pancreas that produce digestive enzymes (the type suffered by the late Brian Lenihan). And it was entirely predictable that Jobs would search far and wide for treatment, given what we know of his professional persona.
I was somewhat taken aback by the comments of a Dr Ramzi Amri in a report published in the Silicon Valley journal Quora. “Let me cut to the chase: Mr Jobs allegedly chose to undergo all sorts of alternative treatment options before opting for conventional medicine,” he wrote. “Given the circumstances, it seems sound to assume that Mr Jobs’s choice for alternative medicine has eventually led to an unnecessarily early death.”
Doctors should always be careful about analysing treatment decisions in patients they have never seen; however, it is accepted that survival for many years is possible with the type of cancer Jobs had, whereas survival with the more prevalent pancreatic cancer is more usually measured in months.
What is most interesting about the Jobs case is the spotlight it places on decisions about consenting to treatment in general. People decline specific therapeutic options more frequently than in the past, a function of greater autonomy and easier access to medical information on the web. Doctors must sometimes accept decisions by patients that make no scientific sense: a patient of “sound mind and adult years” capable of giving consent is free to refuse consent to treatment.
In his book, Clinical Practice and the Law, Dr Simon Mills writes: "In Ireland, the right of autonomy, including the right to refuse medical treatment, is enshrined in the 'unenumerated' rights protected by the State under the Constitution."
It is not necessary that the person’s reason for withholding consent be rational as long as the thought process underlying the refusal is rational. A person has a “right to be wrong” and can refuse treatment even when such a refusal exposes them to the risk of death or serious harm.
Even if the consequences of refusal are worse than the consequences of giving consent, this “right to be wrong” is absolute. The right to withhold consent includes the right to change one’s mind and even to withdraw consent during a procedure. Consent “should be considered as a process, not as an event”, and it is therefore important that there is ongoing discussion to reflect the evolving nature of treatment.
It is this kind of evolutionary consent we are seeing more and more of in medical practice. Chemotherapy may at some point become a palliative rather than a curative option. Instead of carrying on with treatment, it is important to revisit the initial consent and reframe the therapeutic options. Some people will then quite reasonably decide enough is enough and decline further surgery or chemotherapy.
By surviving for eight years, Jobs may have achieved the best results that could be expected of conventional medicine. And it is possible he had much better quality of life while doing so.