Ethics and Intimate Sexual Activity in Long Term Care

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AMA Journal of Ethics
July 2017, Volume 19, Number 7: 640-648
ETHICS CASE
Ethics and Intimate Sexual Activity in
Commentary by Eran Metzger, MD
Abstract
A case is presented in which the staff of a
discovers that the husband of a resident with dementia is engaged in
sexual activity with her. The case illustrates a dilemma for long-term care
facilities that create a home-like environment with a goal of maximizing
residents autonomy while ensuring their safety. An approach to
assessing capacity to consent to intimate sexual activity is described,
followed by guidelines that nursing homes can implement to support
residents who wish to engage in sexual activity. Recommendations are
also offered for supporting long-term care staff and family members of
residents who are interested in intimate sexual activity.
Case
As a second-year psychiatry resident, Dr. Brian is working in a long-term care facility
during his geriatric psychiatry rotation. The facility is structured to accommodate
residents escalating needs with various levels of care, ranging from independent living
to assisted living to nursing home. Dr. Brian is working with a geriatric psychiatrist, Dr.
Anderson, whose main role in the long-term care facility is to provide psychiatric
consultation.
One afternoon, Drs. Brian and Anderson receive a consultation request regarding Mrs.
Shera, an 80-year-old woman living in the nursing home section who has dementia.
When reviewing her record, Dr. Brian sees that she was admitted to the long-term care
facility about six months ago, after living independently with her husband of 55 years.
Over time, it became more difficult for him to manage some of her behavioral issues at
home. For instance, when she would take walks through the woods near their house, she
would get lost on the paths. Sometimes, the police were called to search for her and take
her home. When Mr. Shera tried to limit her excursions, she would become severely
irritable, yelling at him and ultimately swinging at him when he tried to keep her from
leaving the house. These episodes would last about 5-10 minutes, at which point Mrs.
Shera would shut down and then forget what had just happened.
In the nursing home, Mr. Shera visited her as much as he could and she was always
happy to see him. Once, a nurse walked into Mrs. Sheras room and found her and her
AMA Journal of Ethics, July 2017 641
husband in bed together with some of their clothes removed. After Mr. Shera left, the
nurse returned to talk further with Mrs. Shera about what had happened. Mrs. Shera
indicated that she loved her husband and that he was a good man, but she wasnt able to
answer questions about whether she felt comfortable engaging sexually with him.
Troubled that Mrs. Sheras illness compromises her decision-making capacity, the nurse
discussed her concerns with Drs. Brian and Anderson. After talking with Mrs. Shera, the
nurse and the two physicians still were not clear whether and how it was appropriate for
Mr. Shera to engage sexually with Mrs. Shera. They wondered what to do.
Commentary
Mr. and Mrs. Sheras story illustrates only some of the many challenges posed to longterm care facilities (also known as nursing homes) by residents who are engaged in,
desire to be engaged in, or do not desire to be engaged in intimate sexual activity. When
these situations arise, the treatment team is often faced with issues of capacity and
consent, safety, and privacy. The staff could find itself in an ethical dilemma created by
trying to both respect residents autonomy and protect them from harm. The facility
might also need to address the varied reactions of different members of the treatment
team, as human sexuality is an intensely personal topic and can give rise to conflicting
views and embarrassment. The last two decades have witnessed increased scholarly
attention to intimate sexual activity in long-term care [1-5]. This is likely a by-product of
the resident-centered care movement. What originally started as an effort by a coalition
of organizations committed to improving quality of life for nursing home residents led to
language in the 1987 Omnibus Budget Reconciliation Act [6] that for the first time
mandated by statute that a sector of health care provide person-centered care [7]. The
intent of this movement has been to make nursing homes feel more like homes and less
like medical facilities to their residents by eliciting and supporting their personal
preferences, respecting their autonomy, and making changes to the physical plant. The
case of the Sheras and other similar cases invite the nursing home to clarify its response
to the challenging topic of intimate sexual activity by implementing (1) effective
communication approaches with residents and among staff members, (2) assessments
of sexual decision-making capacity, and (3) measures that will ensure resident
autonomy, safety, and dignity.
Ethical Dilemmas Facing Nursing Homes
While trying to accommodate the individual preferences of their residents, nursing
homes must also adhere to federal and state regulations created to ensure safety,
comfort, and standardization of care. In some areas of care, regulations leave little room
for interpretation. For example, residents who receive medications may not take them on
their own volition but must have them ordered by the nursing homes medical clinician,
dispensed by a nurse, and administered within a window of the prescribed time [8]. In
other areas of care, nursing homes have more discretionfor example, by allowing an
individual resident to choose when she will eat her meals and what clothes she will wear.
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Absent from nursing home regulations are guidelines on how to assess and
accommodate residents preferences for intimate sexual activity. Federal government
regulations instruct nursing homes that they must promote care for residents in a
manner and in an environment that maintains or enhances each residents dignity and
respect in full recognition of his or her individuality [9]. However, such mandates fall far
short of providing guidance on how to respond to cases such as that of Mr. and Mrs.
Shera and how to determine when intimate sexual activity might enhance or
compromise dignity. In the absence of regulatory directives on intimate sexual activity,
few facilities have devised their own [5]. Rather, there is a tendency for facilities to fall
back on an approach that does not require the additional effort needed to discern
residents preferences in this area and does not challenge the comfort of the staff. This
default position, however, runs the risk of compromising residents quality of life and
further impinging on their freedoms within an institutional setting.
Assessing the Capacity to Consent to Sexual Activity
In the Shera case, the team consults psychiatry because of uncertainty about Mrs.
Sheras ability to consent to intimate sexual activity. That the psychiatrists, after
interviewing Mrs. Shera, should likewise be uncertain should not come as a surprise.
While Appelbaum [10] and others [11] have provided clinicians guidance on the
assessment of medical decision-making capacity, there is a comparative dearth of
information on assessment of capacity to consent to intimate sexual activity [12, 13].
The former focuses on the ability to accept or refuse an administered treatment, based
on an appreciation of ones situation and the risks and possible benefits associated with
treatment and nontreatment. In contrast to a medical procedure, sexual activity is
considered in healthy and autonomous persons to be the expression of innate drives and
an important determiner of well-being. In assessing medical decision-making capacity,
the medical clinician defines the nature of the proposed intervention and who will
perform it. In assessing capacity to consent to sexual activity, the clinician must acquire
knowledge of the nature of the activity and the relationship of the participants. Clearly, a
different approach is required for determining sexual decision-making capacity than that
for determining medical decision-making capacity.
Lichtenberg and Strzepek have described an approach used in a dementia nursing home
unit to assess residents capacity to consent to intimate sexual activity [14]. Key
components of their assessment include determination of residents: (1) awareness of
with whom they are having sexual contact and what that persons relationship is to
them, (2) ability to articulate the type(s) of intimate sexual activity with which they are
comfortable, (3) consistency of behavior with respect to their previously expressed
beliefs and preferences, (4) ability to decline unwanted sexual activity, and (5) ability to
articulate what their reaction will be if the sexual activity ends. The authors describe a
two-step process whereby the multidisciplinary team, after completing the above
AMA Journal of Ethics, July 2017 643
assessment, observes residents in their milieu in order to determine if their behavior is
consistent with their interview responses.
An emerging literature on sexual capacity in persons with intellectual disability also
provides some guidance. Writing about this population, Lyden [15] proposes that
assessment of sexual consent capacity address the domains of rationality (the ability to
critically evaluate, to weigh the pros and cons, and to make a knowledgeable decision
[16]), sexual knowledge (the specific sexual behaviors in question and the choice to
accept or reject the sexual behaviors in question [17]), and voluntariness (aware[ness]
that he/she has a choice to perform, or avoid, prospective sexual conduct [18]). He also
recommends that the assessment be performed by someone with whom the person is
likely to feel comfortable, ideally someone of the same gender.
Just as the standard for determining medical decision-making capacity is adjusted
depending on the nature of the risk of the proposed treatment [19], so, too, the standard
for sexual consent capacity might be influenced by the nature of the sexual activity in
question. Looking at opposite poles of the continuum, a lower standard of capacity would
be applied to assess Mrs. Sheras capacity to consent to kissing her husband (whom she
is always happy to see) than would be applied to, for example, her consent to engage in
sexual penetration.
Ideally, the clinician could enlist Mr. Sheras assistance in the assessment. Areas to cover
in an interview with Mr. Shera would include the nature of the intimate sexual activity in
which he wishes to engage and to what extent this activity is consistent with their prior
sexual activity. While a formal neurocognitive examination of Mr. Shera, who is not under
the care of the team, would be inappropriate, observing for signs of cognitive impairment
would provide additional data that would help the evaluator in her formulation. Can Mr.
Shera, for example, articulate awareness and sensitivity to the possibility that his wifes
interest in intimate sexual activity might vary from day to day? Can he articulate how he
will assure his wifes physical safety during sexual activity? Is Mr. Shera aware of Mrs.
Sheras privacy needs? Concerns in any of these areas might prompt the team, with Mr.
Sheras permission, to seek ancillary information on Mr. Sheras condition from one of
the Sheras children, if they have any.
Just as no medical or psychiatric diagnosis automatically confers incapacity for medical
decision making, so, too, should clinicians refrain from inferring that a diagnosis of
dementia is prima facie evidence of lack of sexual consent capacity. As one author has
written, in reference to sexuality and Alzheimers disease, As they say, when you have
seen one case, you have only seen one case [20]. There is increased acceptance in
medical ethics that capacity is decision-specific [21]. Inability to make a decision about
medical treatment or to manage finances should not be assumed to denote sexual
consent incapacity.
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Surrogate Decision Makers
The federal 1990 Patient Self-Determination Act increased dramatically the proportion
of nursing home residents for whom a surrogate is identified to make medical decisions
if the resident loses medical decision-making capacity [22]. While it might be the
surrogate decision makers responsibility to render a decision about a residents sexual
activity if he or she lacks capacity, this does not obviate the need for a careful capacity
assessment that would help guide the surrogate decision maker in arriving at this
decision. What if, as could well be the case with the Sheras, the surrogate decision maker
is directly involved in the intimate sexual activity in question? Similar situations in which
there is a potential conflict of interest for the surrogate decision maker faced with a
medical decision occur as well. For example, the decision to withdraw medical treatment,
in accordance with a residents advance directives, might be resisted by the surrogate
decision maker spouse who wishes to keep his partner alive as long as possible.
Alternatively, the decision to embark on a costly treatment regimen recommended for
the incapacitated resident could be resisted by the surrogate for whom it might have
negative financial consequences. In each of these situations, the clinician has the
important role of educating the surrogate on his duty to make decisions in accordance
with the substituted judgment standard [23]. When there is concern that the surrogate
is unable to do this, the team might need to petition the court for an alternate surrogate.
Working with a family surrogate decision makerwhether it is a spouse, an adult child,
or a siblingto address sexual behavior requires sensitivity to the possibility that the
family member will be uncomfortable with the topic [3]. Of family work, one can also say
that, When you have seen one family, you have seen one family. Family members
come to this topic with a wide range of backgrounds and comfort levels in discussing
intimate sexual activity and, specifically, sexual activity of a relative. The clinician is well
advised to give consideration before a family meeting to how a family members
personal, generational, and cultural background can influence the conversation. Some
nursing homes have prepared printed educational material for families [4]. Starting the
conversation by acknowledging the sensitive nature of the topic can be helpful in
mitigating discomfort from the start. Family reactions have run the gamut from
acceptance and encouragement of an activity that provides pleasure at the end of life to
anger and threats to transfer the resident to another facility or take legal action against
the nursing home [3, 5]. The staff member who discusses the issue with the family
should also be aware of her own apprehension about distressing the family.
Family members are not the only ones who might experience discomfort over the topic.
Nursing home staff members personal attitudes about intimate sexual activity are
similarly shaped by a wide range of individual, cultural, and religious influences, resulting
in a similarly wide range of sensitivity to and acceptance of this issue. There is evidence
that staff attitudes, too often a deterrent to resident sexual activity in the past, have
AMA Journal of Ethics, July 2017 645
evolved in this area [3, 24]. The case of the Sheras involves heterosexual activity by a
married couple. A case involving support of less traditional sexual activity such as
nonheterosexual activity or infidelity is more likely to generate unease among some
members of the treatment team [5]. In order for the team to provide consistent
implementation of a plan, it is crucial that all members be provided a forum to express
their concerns [4]. Allowing a team member who opposes the plan to opt out of caring
for the resident might well be preferable to the detrimental effects on team morale
caused by a disgruntled clinical caregiver.
Safety
Safety considerations affect not only the decision of whether to permit sexual activity
but also, if it is to be permitted, how it can take place with minimum likelihood of harm.
Here again, there is no substitute for frank discussion with the involved parties about the
nature of the sexual activity involved and the physical and other risks associated with it.
Such risks could include risks of falling, infection, and a cardiovascular event [25].
Negotiations might result in an arrangement that strikes a necessary balance between
privacy and safety that entails, for example, a staff member periodically checking on the
well-being of a resident during sexual activity. Recall that the Shera case comes to the
attention of the treatment team after a nurse walked into Mrs. Sheras room and found
her and her husband in bed together with some of their clothes removed. Staff
members should be coached on how to protect the privacy and dignity of residents
engaged in sanctioned sexual activity. Approaches have ranged from the use of Do Not
Disturb signage to providing a separate room for privacy when a resident does not have
a private bedroom [4, 5, 14].
Towards a Resident-Centered Approach to Sexual Intimacy in Long-Term Care
The story of the Sheras will be familiar to clinicians who practice in the long-term care
setting and is only one of many scenarios of sexual intimacy that the nursing home staff
might confront. In keeping with the ongoing effort to create senior care environments
that are respectful of patient autonomy and preferences, long-term care facilities are
encouraged to include plans on how to accommodate sexual intimacy. Forrow and
colleagues have advanced the concept of preventive ethics, whereby a medical
institution engages in activities that can serve to decrease the likelihood of cases
evolving into ethical conflicts [26]. Such activities include an emphasis on communicating
early about potential conflicts and taking the time to reflect on what institutional factors
might give rise to trouble down the road. Nursing homes can implement a number of
strategies to help improve their readiness to address an instance of resident intimate
sexual activity. Table 1 highlights some central action steps to help a facility prepare in
this manner.
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Table 1. Action steps for accommodating intimate sexual activity in long-term care [4, 5]
Preparation
Determine statutes and case law on sexual consent for your state.
Draft guidelines for your institutions management of resident sexual activity.
Establish resources to support resident sexual activity:
resident sexuality consultation team (analogous to palliative or wound care,
infection control)
intimacy room for residents who do not have private rooms, appropriate
signage
educational materials for staff, families
aids (e.g., lubricants)
Hold staff training sessions.
Management
Consult resident sexuality consultant.
Conduct sexual consent capacity assessment.
Construct individualized plan detailing approaches to maintain safety and privacy.
Hold staff support meetings.
Problem-solving resources
Ethics committee consultation
State Long-term Care Ombudsmans Office
Summary
Human sexuality and expressions thereof are a sensitive and deeply personal area of
human experience. While no amount of preparation can anticipate every possible
scenario, the approaches described here are likely to improve clinicians confidence in
responding to intimate sexual situations in a manner that is respectful and consistent
with the long-term care facilitys mission of creating a safe and life-affirming home.
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Eran Metzger, MD, is an assistant professor of psychiatry at Harvard Medical School in
Boston. He is also director of psychiatry at Hebrew SeniorLife and a member of the
Department of Psychiatry at Beth Israel Deaconess Medical Center. His research and
teaching interests include medical ethics in long-term care, collaborative care treatment
of depression in primary care geriatrics, and the biological basis of delirium.
Related in the AMA Journal of Ethics and Code of Medical Ethics
Code of Ethics Opinion 2.1.2 Decisions for Adult Patients Who Lack Capacity, June 2016
Preventing and Detecting Elder Mistreatment, June 2008
Should Dementia Be Accepted as a Disability to Help Restore Hope during Cognitive
Decline?, July 2017
Statutes to Combat Elder Abuse in Nursing Homes, May 2014
The Strains and Drains of Long-Term Care, June 2008
Strategies for Building Trust with the Caregiver of a Patient with End-Stage Dementia,
July 2017
The people and events in this case are fictional. Resemblance to real events or to names of
people, living or dead, is entirely coincidental.
The viewpoints expressed in this article are those of the author(s) and do not necessarily reflect
the views and policies of the AMA.
Copyright 2017 American Medical Association. All rights reserved.
ISSN 2376-6980