Be cruel to be kind to dying cancer patients

This story was first published in The Straits Times on Aug 27, 2013

MANY patients with terminal cancer are not aware that the palliative chemotherapy or radiotherapy they are getting doesn't cure.

Palliative therapy is meant to shrink the size of tumours that cause pain, cough or other physical symptoms of cancer and also slow the progress of cancer enough to extend life somewhat. But it does not cure.

Many patients consent to such treatment in the mistaken belief that it can cure them, in part because of mixed signals from doctors. Doctors should be gentle but firm in getting patients to understand that palliative therapy may prolong life but won't cure the cancer. Worse yet, it can have very bad side effects.

Only with such honesty can patients properly consent to or refuse such therapy. It is also kind because the truth will enable them to plan for the end better too.

The issue came home for me recently. My 81-year-old mother, who has advanced lung cancer, is taking a drug called gefitinib (marketed as Iressa). It offers targeted therapy, which refers to drugs that hit one or just a couple of gene products only. She has suffered no ill effects from Iressa.

By contrast, conventional chemotherapy targets many gene products in a blunderbuss fashion. My mother was just told that she may be started on the "cruder" chemotherapy from January if Iressa has not shrunk the tumour any more by year's end. This would cause hair loss, nausea, vomiting, diarrhoea, fatigue and other unpleasant side effects.

When she asked her oncologist if he was offering "cruder" chemotherapy because it could "cure", he was non-committal. Furrowing his brow, he began mumbling about how he planned to "treat" her from now on, the word being the same one in Chinese.

My mother thought the oncologist meant that chemotherapy could potentially cure her. A cure meant living significantly longer than the two years she was told she had left at diagnosis, she felt.

Miracles aside, no cure is possible with advanced lung cancer that has already spread - to the bones, in my mother's case - but her misplaced expectations of a cure put her in good company.

A recent study published in the Journal of Clinical Oncology (JCO) looked at the "expectations about the effectiveness of radiation therapy among patients with incurable lung cancer". The team had earlier published a similar study in 2012, in the New England Journal of Medicine, on patient expectations about chemotherapy effectiveness in advanced lung/colon cancer.

In both studies, patients were asked, "After talking with your doctors, how likely did you think it was that (chemotherapy or radiotherapy, respectively) would: help you live longer; cure your cancer; help you with problems you were having because of your cancer?"

The 2013 study reported that 64 per cent didn't understand that radiotherapy was "not at all likely" to cure their advanced lung cancer. The older the patient, the more likely this misperception.

The 2012 study reported that 69 per cent of advanced lung cancer patients and 81 per cent of advanced colorectal cancer patients didn't understand that chemotherapy was "not at all likely" to cure.

In both studies, the misunderstanding was not related to a patient's educational level, how well he was functioning physically and how actively he participated in his own health-care decisions.

The study didn't look at the causes of such views. But an obvious question is whether oncologists are making it clear enough to their patients how dire the prognosis might be. Many doctors think they should "not take hope away" and also assume that some patients "don't really want to know".

So they just drop hints on and off, with a frown here and a "this worries me" there. Perhaps doctors subconsciously but unrealistically see a patient's death as a personal defeat.

Patients, unwilling to accept the reality that there is no cure, may also be in denial. So they may misconstrue whatever the oncologist says, playing down the bleakness of their own prognosis.

For the oncologist, there is little real difference between using palliative therapy that might just prolong life a little, and persisting with that therapy because he has nothing else to offer.

In such a situation, continuing with "treatment" will be easier than stopping, which would dash any unrealistic expectations that the doctor himself might have inadvertently helped to foster.

Do all these mixed signals and confusion matter? Well, yes, if the upshot of all this is that a patient doesn't quite understand that palliative therapy won't cure but might worsen his quality of life. In such a case, the patient cannot be said to be able to give truly informed consent for that therapy to continue.

A 1995 study in JCO found that advanced cancer patients would agree to a toxic therapy if there was just a 1 per cent chance of a cure. But they wouldn't agree to the same therapy even if it increased their life expectancies substantially without leading to a cure.

That would suggest, extrapolating from results of the 2012 and 2013 studies, that a good 64 to 81 per cent of patients with advanced cancer who submit to palliative therapy might not have done so had they really understood it would not cure them.

Their inaccurate beliefs about the goals of such palliative therapy make them more willing to endure what are really very intensive treatments that can impair the quality of their remaining life. And rack up huge hospital bills as well. This means that all this misunderstanding hobbles a patient's end-of-life planning.

However, the 2012 and 2013 studies also showed that oncologists who were brutally honest with their patients - who thus understood correctly that palliative therapy did not offer a cure - were rated by their (upset) patients as being poor communicators.

But ratings aren't everything. Making it crystal clear to a terminal cancer patient that palliative therapy won't cure him enables such a recipient of bad news to plan better for the end. That would in no sense be unkind at all.

This story was first published in The Straits Times on Aug 27, 2013

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