All of us dread being diagnosed with what is often referred to as the Big C - cancer. The fact that we try to reduce the impact of such a diagnosis by referring to it as such shows the strength of that fear.
It's difficult for a physician to deliver bad news, and medical students and young doctors struggle to learn how to do so compassionately. It's difficult for patients given such news to pass it on to loved ones. And it takes us time to adjust to the new circumstances our diagnosis presents, whether we're the patient or family and friends.
Serious illness threatens our sense of being in control of our lives, of being able to direct what happens to us. Indeed, suffering is defined as a feeling of a loss of control over what happens to us and a sense of our own disintegration that we are unable to counteract. Consequently, seeing ourselves as being able to take control, at least in some respects, can be a suffering-reduction mechanism. When we can't control a life-threatening illness and what it's doing to us, we often seek to take control in other ways. Having control over information about our health is one such way.
Personal health information is among the most strictly protected information in terms of privacy and confidentiality. In both ethics and law, the basic presumption that governs access to it is that it's private and confidential. That means it can't be disclosed without the patient's informed consent. In theory, health-care professionals must have consent even to share it amongst themselves, although this requirement is far from fully honoured in practice.
But research shows that patients agree that sharing their health information with other health-care professionals is acceptable when it's necessary for their care. But, interestingly, they oppose any sharing of such information with their family members without their express consent. It's interesting to note in this regard that, in his column urging NDP Leader Jack Layton to fully publicly disclose his health information, André Picard refers to the Canadian public as Mr. Layton's "political family."
Because of the presumption of privacy and confidentiality of health information, exceptions that are needed for public safety or the protection of other people are legislated. Examples include reporting of public health risks from infectious diseases, child abuse that becomes known in a health-care context, physicians whose patients would be dangerous driving a vehicle, airline pilots with conditions that make them unfit to fly, physicians with serious mental illness or addictions, and so on. It's also possible that a defence of necessity could apply to justify a one-off disclosure in certain circumstances.
All of the above applies to Mr. Layton's health information. But does he, as Mr. Picard argues, have an obligation to Canadians to be more explicit about his diagnosis because he's a public figure? The short answer is no: There's no such obligation, whatever the morbid curiosity of people with respect to him or other public figures might be.
It's true that, as a public figure, one is not as fully protected from defamatory statements as others are - one is considered to have voluntarily placed oneself in a position that means one must tolerate more severe scrutiny and criticism than members of the general public. But there's no corollary requirement to disclose one's private information, including health information, or, for that matter, publicly to confess one's sins, unless placed on oath.
That said, does the nature of the public position make a difference? Mr. Layton, after all, is Leader of the Official Opposition. Well, if such a person's illness placed the country at risk or threatened serious harm to the public, it could be relevant to disclose it. But this isn't true of Mr. Layton's illness and, in any case, he has taken a leave of absence from his party. Moreover, he has disclosed more than enough for Canadians to know the general nature of his illness; they don't need to know more, unless he chooses to tell them.
And why might Mr. Layton choose not to do so? I know from personal experience that other people see and interact with us differently when they know we have a serious illness, especially a potentially life-threatening one. Their curiosity can also augment our fears. And we can be more sensitive than usual to the feedback we receive from them - they can seem to confirm we are desperately ill and not going to conquer our health problems when we want to believe otherwise. Hoping for the best and, to the extent necessary, using denial as a coping strategy can be a mentally healthy response in such situations.
A diagnosis can sometimes be sensitive personal information, perhaps because our illness or its treatment involves embarrassing symptoms. Keeping some information private can help to give us a sense of control, which helps to reduce fear and anxiety and, as explained above, suffering. And sometimes, we just need the space that privacy provides, small as that space may be in relation to a public figure, to come to terms with our changed situation.
Canadians owe Mr. Layton respect for his privacy and for his wishes in this regard. Apart from our prayers for his recovery, it's the very least we can offer to this charismatic and courageous man who has served us to the far limits of his energies.
Margaret Somerville is the founding director of the Centre for Medicine, Ethics and Law at McGill University.
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