To what extent does medical science consider the patient’s peace of mind when dealing with potentially fatal ailments? The answer is not always reassuring.
Researchers in the U.S. believe they are close to developing a simple blood test that will reveal early onset Alzheimer’s. By “early onset” is meant the patient is exhibiting symptoms such as memory loss which may be associated with the disease, but nothing definitive. We all lose elements of cognitive function as we age, some of us more rapidly than others.
The argument for blood testing is that it might be possible, if the disease is detected soon enough, to slow the onset with medication.
The argument against is that we have no cure for this ailment, and those drugs presently available only limit its progress by small degrees.
It’s here that patient peace of mind comes in. Why would you subject someone to a blood test that might inform them they have a grim and eventually fatal disorder, if there’s nothing you can do to save them?
Aren’t you depriving them of whatever months or years of comfort may remain, before the truth can no longer be avoided?
We faced this dilemma when blood tests for AIDS first became available, but no cure existed. Patients who requested the test were advised that after the results were known, they would be asked if they still wanted to learn the outcome.
They were told this because anyone showing up for test results and being asked without prior warning if they wanted the answer, would naturally assume the news must be bad.
This was a reasonable test to conduct, because AIDS is an infectious disorder, and the health of others had to be considered.
But Alzheimer’s is not infectious. So can blood tests ahead of a definitive diagnosis be justified?
I think it should be a matter of individual choice. Some people would rather have certainty, even if the news is bad, rather than face a lingering sense of unknown dread. Others would see things differently.
But once the test becomes available, will patients be given the option of declining it? You might think so.
But now a second example. It’s standard procedure for men over 60 to have annual prostate exams. It is the professional duty of physicians to tell their patients this.
Here is the downside. If you have a low-grade tumour, and most prostate cancers are low-grade, the chances are you’ll be assigned to “watchful waiting.”
That means, in effect, that no steps will be taken to deal with the cancer, but you’ll be called in every six months for a follow-up test, to see if the tumour has grown more aggressive.
Some men will welcome the assurance that their cancer is being monitored. And some will certainly die if they decline, though recent studies suggest the improvement in life expectancy that accompanies treatment is fairly modest.
Here again, though, is the dilemma. Do you want to sacrifice the peace of mind that comes with not knowing, in exchange for a lifelong series of tests that will hang over your head like a sword?
As before, the correct answer is that it’s up to the individual patient. Yet he can only make an informed choice if he’s told what may lie ahead, and that includes the possibility of watchful waiting.
Friends have said this information isn’t always provided. Medical science values certainty, more than it does peace of mind.
I raise this issue because the future holds many more such dilemmas. Our progress in diagnosing ailments is moving faster than our ability to offer cures. Indeed, it might soon be possible through genotyping to predict someone’s future disease path years ahead.
We need an open discussion about the ethics involved in offering such tests. And we need an assurance that when peace of mind is an issue, the patient will play the deciding role, not some distant research team.
For no one is an expert in someone else’s state of mind.
