MEDICAL MATTERS:An important point was raised this week - cancer treatment is, ultimately, optional
NUALA O'FAOLAIN has spoken bravely and frankly about dying of cancer. In a remarkable interview with Marian Finucane on RTÉ Radio 1, the author and former Irish Times columnist described how, although diagnosed only six weeks previously, the lung cancer had spread to her brain and liver.
"As soon as I heard I was going to die, the goodness went from life," is a frank statement of the sometimes brutal impact of incurable disease. But what stood out for me was an attitude to further treatment you rarely hear expressed so clearly.
"There is no chance of a cure. There's a chance of aggressive treatment that will gain you some time, often good time . . . the question arrived. I was supposed to start chemotherapy.
"I was supposed to start 18 weeks of it, six goes of it. After three goes they would have known if it was working.
"But whether it was the disease or the brain radiation, I don't know or care, [ it] reduced me to such feelings of impotence and wretchedness and sourness with life . . . and fear, that I decided against it."
One of the truly great advances of modern medicine is chemotherapy for cancer. Ideally, it is given at a time and in a format that offers high cure rates. But cancer specialists have also developed an expertise in palliative chemotherapy (and surgery and radiotherapy) which is aimed at prolonging life while offering no specific hope of curing the disease.
This works well when the prognosis is clear and the patient is made aware of treatment benefits and side effects in a way that enables them to make a decision most likely to ensure a good quality of life.
However, sometimes the situation is less clear: what starts out as curative treatment may not have the hoped-for effect, with the result that the same treatment is now palliative, but without the express acknowledgement of this change by either doctor or patient.
A 2000 Dutch study examined the phenomenon of "false optimism about recovery" in a group of patients with lung cancer. The researchers noted that, after their first course of chemotherapy virtually all their patients showed a "false optimism" - the patients' interpretations of their prognoses were considerably more optimistic than those of their doctors.
The study showed that this "false optimism" was the result of a combination of doctors' activism and patients' adherence to their treatment schedule. It seems that doctors actively try to bring stability to the uncertain future of patients by occupying them with treatments such as chemotherapy and with planning future tests and check-ups.
This "medical activism" helps both doctors and patients divide the path of illness into much smaller and less emotionally charged end points.
By focusing on their "treatment calendar", patients tend to avoid the issue of prognosis. In attempting to deal with this reality, doctors cannot force awareness on a patient. Rather they must adopt a supportive, patient-orientated approach that avoids false optimism.
The authors also float the idea of "treatment brokers" - people trusted by both the doctor and the patient - who could help both parties in communicating otherwise implicit assumptions. Such a role sometimes falls, by default, to general practitioners and practice nurses.
In the past I have had to adopt a somewhat similar role when it became clear that patients thought they were receiving curative treatment when it was obvious the role of ongoing chemotherapy was now palliative.
Nuala O'Faolain has drawn attention to an important reality. Just because it is offered does not mean you have to accept chemotherapy. By asking about the potential side effects and the amount of time that you will need to devote to hospital care while undergoing chemotherapy, you can make a real choice as to how to live the rest of your life.
Some will opt for ongoing treatment, perhaps to achieve a specific goal. Others will decide in favour of a (however brief) respite from doctors and hospitals. A few will even change their minds mid-way through either option.
There is no right or wrong way. Just the way that's appropriate for you and your circumstances. We should be grateful to Nuala for speaking out on such a difficult and sensitive issue.
Dr Houston is pleased to hear from readers at mhouston@irish-times.ie but regrets he is unable to reply to individual medical queries