Scitech  Lost In Transcription: Disclosure, best bet?

Western concept of patient’s right to know may be in conflict with positive health outcomes

You have the right to know what’s wrong with you. You have the right to know if you’re sick, how serious it is, what treatment options are available to you, and, as the case may be, how long you have left to live. Statistics, studies, test results, and treatment success rates should all be at your disposal so that you can be in charge of the decision-making. It’s your body after all, right?

Without thinking twice, most living in North America would uphold the rights of the patient to full medical disclosure. We live in an “I”-centered time and place, alive with individualistic responsibilities and rights. When it comes to medicine, the truth is one of those important rights. But I think some sometimes dismiss the impact that the phrase “it doesn’t look good” can have on a person’s recovery.

After some very brief dabbling in anthropology courses at McGill, I’ve learned that patient autonomy and bioethics are relatively new concepts. Until recently, in Japan and Italy for example, physicians practiced more protective, less divulging discussions of prognosis and treatment with cancer patients. A paper by anthropologist Mary-Jo Delvecchio Good entitled “Cultural Studies of Biomedicine” explains that, “ambiguity in the face of mortal illness is prized in both [Japanese and Italian] societies; it is considered a quality of clinical interactions necessary to maintain patients’ hope and will to combat disease.”

From an outside perspective, it’s easy to criticize a protective system like this. But, in recent years, the world has seen huge movements in patients’ rights that shift toward Western bioethics – even in Japan and Italy.

But should we dismiss the effect that this kind of information has on us? If you were told that you only had a year, or a few months, or a few weeks left to live, you would probably like to think you would carpe diem the hell out of your life, do everything you’ve always wanted to do. But could you manage to do it all with this knowledge looming over you? Your approach to the news could affect how your body heals. How many of us would be able to summon the mental conviction to fight, and how many of us would be too scared to do anything? Would we gain or lose hope in the face of illness?

The traditional practices of Japan and Italy might seem far off from Western medicine, but really they’re both trying to tackle that question of hope. The Western point of view says people are more hopeful when they have all the facts, statistics, and options in front of them, but for other cultures, those things can be seen as detrimental.

The common link, however, is the belief that the mind plays an important role in the body’s healing process, something medical science is recognizing more and more. We may not fully understand the chemistry of it yet, but we’ve all heard enough examples of the placebo effect at work to know that a person’s attitude, faith, and mental process can play a powerful role in her health.

Still, can someone else really decide what you’re better off not knowing? If ethics and their implications for medical disclosure clearly depend on culture and situation, maybe in some cases, ignorance is bliss. I don’t pretend to know the answer, but maybe one day my body will tell me.

Send tips on how to carpe diem the hell out of your life to Positive prognoses also welcome.