Bioethicists and experts on aging spend some time advising people on advance directives aimed at helping us make decisions about our medical care in the event of dementia or unconsciousness near the end of our lives. The idea is that we may give prior consent for decisions to be made when consent is not possible. We generally make decisions about what treatments should be offered or withheld in the event of fading autonomy.
Perhaps we should consider a broader range of choices as well. In some cases, a person with dementia can consent to a variety of activities that might not have seemed appropriate previously. In Holding and Letting Go: The Social Practice of Personal Identities, Hilde Lindemann gives an example of a life-long vegetarian and animal rights activist who ends up in a residential care facility and desperately wants to eat the meat dishes offered his fellow residents. Should his earlier convictions be respected or should his later desires be sated?
Lindemann breaks down the problem by identifying a capacity for two types of volition: primary and secondary. Primary volition is simply the ability to want something. Secondary volition is the ability to want something but think better of it because of overriding desires, which could be based on moral, social, or health concerns (among others). Our resident is able to want a hamburger but not able to think about the ethics of eating meat and how it affects the animals, the environment, or the economy. People who eat meat tend to say it is harmless to give him a hamburger, so his current desires should be indulged. People who care about animals might take a different view.
But what if we weren’t talking about eating meat? Perhaps our resident never cared about animals, but did care about sexual behavior. He may have been prude or strict moralist. Now, however, he would quite like to masturbate frequently and doesn’t mind who sees or knows. In the past, of course, he would have been more discreet, but he has lost the ability to take such concerns into account. Still, it is his body, and he should be able to do what he wants, even if the comfort of other residents and staff must also be considered. When the occasion arises, Mr. X might gently be guided to a private room.
Or he may meet a fellow resident with similar desires. Surely consensual sexual activity, with allowances for the comfort of other residents and staff, should be respected. When younger people have limited autonomy, we are likely to say they are incapable of consent, making sexual relations with them problematic at the least. Such patients are “protected” from sexual advances of any kind, even if they may appear to be willing “victims.”
Rarely is this debate framed as a “right” to sexual pleasure, but sexual puritanism is the only reasonable explanation for the imbalance in the discussion. Surely sexual pleasure is a human drive and a human need. If it isn’t such a strong drive for older patients, it is certainly still a human good. Currently, even the most progressive attitudes toward sexual pleasure for older patients could only be described as polite tolerance rather than accommodation.
To actually accommodate the sexual needs and desires of older, and sometimes demented, patients would require conversations and actions that are sure to make us uncomfortable. It may be possible to discreetly make condoms available to residents in nursing homes, but asking residents whether they might want a vibrator or other sexual aid available is more of a challenge. Involving children and grandchildren in the discussions is likely to be an insurmountable model, at least without a sea change toward sexual behavior in general and among the elderly in particular.
A further difficulty is posed by the possibility of sexual assault or exploitation. Normal guidelines for consent won’t do. A demented patient might consent to sexual activity that would never have occurred in the absence of dementia. The only way to honor the wishes of a patient’s lifelong values is to have difficult discussions earlier in life. We would need to ask question of this nature: “In the event of dementia, what types of sexual pleasure if any would you like to be available to you? What types of sex if any would you consider appropriate with other people? What types of sexual aids if any would you want provided for your pleasure?”
I would caution any young people thinking of completing an advance directive now to reconsider often. As we age, our estimation of what kind of sex lives we will want in old age changes dramatically. Younger people tend to assume that older people naturally lose interest in sex, and I’m sure some do, but many older people find the opposite.
Sexual pleasure has many advantages for older people. It doesn’t cost a great deal of money or effort. While illness and disability can limit sexual options for people of any age, they do not eliminate it. Sexual pleasure doesn’t require one to leave a residential facility, isn’t inherently risky (especially when partners are not involved), and doesn’t necessarily strain the budget (expensive sex toys and porn addictions notwithstanding). In fact, for many older patients, sexual pleasure may be one of a handful of pleasures still available to them.
Some of the risks of sexual behavior are no longer of concern to older patients. While sexually transmitted diseases are still a distinct possibility, many of the diseases seem much less frightening to someone nearing the end of life. Further, pregnancy is no longer a concern, and people who have already lost their spouses are no longer concerned with issues related to fidelity. In ways the young rarely understand, old age is liberating.
Of course, sexual activity of patents has the possibility of creating discomfort for staff. Taking care of a patient should not mean providing sexual services for patients, unless one is specifically hired as a sexual surrogate. Staff must be protected from sexual assault or exploitation. However, feeling squeamish or embarrassed is not the same thing as enduring sexual harassment or assault, and staff must know the difference.
We can make staff more comfortable by becoming more comfortable ourselves with elder sexuality. Normalizing mature sexuality will go a long way toward opening frank and productive discussions of policy and procedures to protect the sexual rights of patients.