Informed Consent is Important

Informed consent is defined as being able to receive and understand the consequences of an action before authorizing it to be done, and it’s necessary before any medical procedure or prior to releasing any medical information, says Stuart Furman, Esq. an elder law attorney in California and author of the award-winning “ElderCare Ready Book” and “ElderCare Ready Pack.”

“The capacity to consent is grounded in mental capacity. Do they understand the nature and extent of the treatment and can they appreciate the reasonably foreseeable consequences of their decision to move forward, or to refuse treatment?” Furman explains.

From a legal perspective, as part of estate and personal planning, a person should lay out clear health care directives so that their selected agent can make decisions when they are unable, Furman advises. Unfortunately, determining when a person is unable to give consent is not straight forward.

How to Determine Consent and Capacity

Furman points out that a diagnosis of dementia is not the same as a determination of capacity. “Someone with a diagnosis of dementia could be perfectly competent to make health care decisions if the disease has not progressed to a point where they have lost mental capacity,” he explains.

Thus, determining capacity to consent must be done on an individual basis, and a physician should weigh in. Developed to help physicians working with Alzheimer’s patients, the guide “Determining Capacity to Consent“ suggests that health practitioners assess their patient’s capacity to consent to treatment by asking a series of questions, including whether the person:

  1. Has realistic expectations.
  2. Is able to explain the nature of the treatment and understand relevant information.
  3. Is able to make decisions and communicate their choice.
  4. Is able to manipulate the information they receive rationally.
  5. Is aware of the possible outcomes of treatment, alternatives or lack of treatment.
  6. Understands the condition for which the specific treatment is being proposed.

If the patient does not have the capacity to consent to treatment, then unless the situation is an emergency, “the health practitioner is expected to follow the guidelines developed by his or her own professional body,” the guide advises.

When a patient is considered incapable of consenting to treatment there are many steps a physician must follow including informing the patient of the need for a substitute decision maker. As with tests for legal capacity, the definition of a substitute decision maker varies slightly by state or province, but broadly includes a(n):

  • Attorney for personal care
  • Child or parent
  • Guardian of the person
  • Relative (related by blood, marriage or adoption)
  • Representative appointed by a consent and capacity board
  • Sibling
  • Spouse or partner

As you can see, having a substitute decision maker in place is important, and families should set out health care powers of attorney and run through possible medical scenarios before capacity is lost to ensure all legal and medical documents are in place when needed.

This pre-planning ensures the person with dementia doesn’t have to delay treatment as physicians determine who the substitute decision maker is. Without a clear decision maker (or if there is disagreement over who the decision maker actually is) a physician may need to take the case to a consent and capacity board, which is an independent, quasi-judicial tribunal often created by the state or province.

Romantic Relationships and Sexual Consent

While there are guidelines in place for medical consent, things aren’t as clear when it comes to romantic relationships or sexual consent. There have been cases in the news about dementia patients and their capacity to consent to sex. “When it comes to dementia and sexuality… the aging population has been described in the media as a ‘rape case time-bomb,’” observe Alisa Grigorovich and Pia Kontos.

In their article “A New Way to Think About Dementia and Sex,” Grigorovich, a Postdoctoral Fellow with the Dalla Lane School of Public Health, and Kontos, a Senior Scientist with the Toronto Rehabilitation Institute University Health Network point out that “the sexual rights of persons living with dementia are largely ignored within residential care policy, professional training and clinical guidelines.”

Their article, which claims that “a new ethic of dementia care is urgently needed,” points out that current guidelines for lawmakers and physicians do not address the sexualities of persons living with dementia and that guidelines should in fact be crafted to support sexual expression and facilitate sexual rights.

Senior Living Communities, Consent and Capacity

For administrators of senior care communities, the lack of clear legal or medical guidelines around sexual consent in the case of someone with dementia creates a challenge when it comes to protecting seniors in their care, while also supporting their sexual rights.

From a legal perspective, “consent to have sex is similar to informed consent,” Furman says. “Capacity to consent is complicated by the fact that consent may be necessary for different sexual acts and is act specific,” he says.

Steve Morgan, of the Senior Housing Forum, suggests that senior living providers air on the side of caution while acknowledging that “residents have the right to be sexually active if that is their mutual desire.” Morgan suggests that “while it’s hard to talk to families about their parents or grandparents’ sexual activities, families need to be part of the discussion when they have the legal right to be involved.”

In addition to having frank conversations with the appropriate people, Morgan advises senior living communities to “document… whatever you do and why you are doing it. Depending on the level of care, state regulations, and your relationship with your licensing folks, a proactive conversation could save some pain down the road.”

Ultimately, guiding policies around a person with dementia’s capacity to consent to medical treatment are fairly well developed, but guidelines around capacity to consent to sex are either non-existent or in their infancy. Luckily with work by diligent senior living communities, lawyers and policy makers, this murky area is slowly becoming a little clearer.