It’s always dangerous to discuss a case based exclusively on information from the media or arguments based in court. So I won’t presume to know what actually happened in the nursing home between Mr. and Mrs. Rayhons in her nursing home bed. But I do worry about the well-being of all those who have dementia. And I think that seeking to deprive people with dementia of one of the few pleasures they may still be able to experience in life is tragic.
The pundits have been pontificating that the Rayhon case is all about informed consent. But is it? Since when is informed consent required for anything other than a medical procedure or a research study? The case seems to me to be more about the quality of life of individuals with diminished cognitive capacity and the medicalization of society than about consent.
Informed consent is a tremendously important concept in medical treatment and medical research. One hundred years ago, future Supreme Court Justice Benjamin Cardozo ushered in the modern era of informed consent when he stated forcefully that “Every human being of adult years and sound mind has a right to determine what shall be done with his own body”—and that performing surgery without consent was assault and battery.
The need for informed consent, and the devastating consequences of performing medical experiments without it, were brought home after World War Two, when Nazi experimentation on hapless prisoners was revealed. The Nuremberg Code, promulgated in 1947 in response to the horrors inflicted in the name of science, established voluntary consent as essential to the ethical conduct of research. A mere twenty years later, the anesthesiologist Henry Beecher divulged to the American medical community that research without informed consent was occurring with alarming frequency. As a result, a regulatory framework was put in place to assure ethical conduct by physician investigators, at least among those applying for NIH funding of their work. Voluntariness is the bedrock of informed consent. But what does all this have to do with intimacy between two members of a married couple?
Not much. Sexual intercourse is not a medical procedure. Deciding whether or not to engage in intimacy is not like deciding whether to participate in medical research. It is something that is normal and expected within the context of the marital relationship. Nor do we expect people with Alzheimer’s disease to sign an informed consent form before they have dinner, acknowledging that they are aware of the risks and benefits of the meal they are about to eat. We don’t ask people with Alzheimer’s disease to formally agree to wear a coat when it’s cold out. What business do doctors, nurses, and nursing home administrators—let alone courts and juries—have interfering in the private relationship between two adults?
To be sure, not all sexual relationships are voluntary, even within a marriage. People who have dementia are vulnerable and need protection against abuse. But to apply the standard of informed consent to everyday life, a standard meant for people undergoing cardiac catheterization or surgery, or for taking experimental medications of no proven benefit, is profoundly misguided.
We need to broaden our view of how best to approach people with dementia to go beyond a narrow focus on safety. Of course physicians and nurses and social workers want those in our care to be safe. But many vulnerable older people do not consider safety their paramount concern. They would rather take the risk of falling than be confined to bed. (It’s worth noting that while conventional restraints do not necessarily prevent falls and are in fact associated with injury, surely it would be possible to tie people down using four-point restraints in such a way that they could not possibly get up and fall.) They would rather live on their own, even though they might become ill and have no one with them, rather than forgo their independence. The interest of many, quite likely most, frail or demented older people, is in maximizing their quality of life. And that means interaction with other human beings.
We know that people with dementia experience emotions long after they have lost much cognitive function. We know they respond to a smile or a hug even if they cannot tell you the full name and birth date of the person who is hugging them. Surely to deprive people with dementia of the possibility of intimacy if they are fortunate enough to be in a relationship with a loving spouse, is cruel and unusual punishment. There are other, better ways to protect the vulnerable.