Ethics Consult: Does Dementia Preclude 'Consent' to Sex? MD/JD Weighs In

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Welcome to Ethics Consult -- an opportunity to discuss, debate (respectfully), and learn together. We select an ethical dilemma from a true, but anonymized, patient care case, and then we provide an expert's commentary.

Last week, you voted on the ethics of letting Alzheimer's patients have sex.

Assuming there is no risk of spreading disease and only a minimal risk of injury, should the staff allow Riley and Norma to continue their sexual encounters?

Yes: 86%

No: 14%

And now, bioethicist Jacob M. Appel, MD, JD, weighs in with an excerpt adapted from his book, Who Says You're Dead? Medical & Ethical Dilemmas for the Curious & Concerned.

Sex among the elderly, and particularly among elderly patients suffering from dementia, has long been a taboo subject in the United States. This contrasts with some European nations, such as Denmark, where Copenhagen's Thorupgaarden nursing home makes pornography and prostitutes available to residents.

In U.S. facilities, sexuality is more likely to be met with concern or even derision. This proves especially true with cognitively impaired patients. In 1996, an Ohio court denied a husband overnight nursing home visits with his stroke-afflicted wife for fear that he might seek "sexual intimacy" with her -- and that this might lead to litigation for the facility.

A 78-year-old former Iowa state legislator, Henry Rayhons, briefly made national headlines when prosecutors tried him for sexual activity with his elderly wife, who suffered from Alzheimer's disease. Prosecutors argued that Donna Rayhons lacked the capacity to consent, but the jury acquitted her husband of all charges. Only a few U.S. nursing homes, such as the Hebrew Home at Riverdale in New York, have proactive policies legitimizing and governing sex between patients.

One challenge in dementia cases is the issue of consent. Yet consent -- with its formal standards -- is a problematic concept when speaking of impaired patients. Elderly patients with dementia do not "consent" (in the legal sense) to many things -- having their blood pressure checked, showering and changing clothes, eating. Rather, they often "assent" to such activities, either by smiling or expressing enthusiasm or merely offering no resistance, even when they may not fully understand what they are doing or why.

Sexual activity is obviously more complicated than merely eating or watching television, and one certainly wants to protect vulnerable patients from truly involuntary sexual activity that amounts to sexual assault. Slate columnist Daniel Engber several years ago raised the possibility of "formal exceptions to the consent rules for spouses or long-term partners." Rather, one might merely require assent in such cases -- evidence that that patient is willing to engage in the behavior and appears to enjoy it.

More complex are cases of two elderly individuals with dementia, like Norma and Riley, who seek sexual activity with one another and appear to benefit from it. How to preserve both safety and dignity for these residents under such circumstances is a challenge, but not one that necessarily justifies enforced chastity.

The feeling and wishes of third parties, such as the patient's spouses and children, may also prove a concern. Should Norma and Riley's nursing home inform their families about their relationship? Should their children have any say in whether the relations are permitted to continue?

In one high-profile instance, the New York Times reported on the romance between former Supreme Court justice Sandra Day O'Connor's cognitively impaired husband and another cognitively impaired resident at his assisted living facility -- although the article did not explicitly touch upon their sex lives. Justice O'Connor, ever graceful under stress, appeared supportive. One can easily imagine another spouse feeling less sympathetic.

Jacob M. Appel, MD, JD, is director of ethics education in psychiatry and a member of the institutional review board at the Icahn School of Medicine at Mount Sinai in New York City. He holds an MD from Columbia University, a JD from Harvard Law School, and a bioethics MA from Albany Medical College.