A Practitioner’s Guide to End-of-Life Intimacy: Suggestions for Conceptualization and Intervention in Palliative Care

Abstract

Sexuality and intimacy, including contact, tenderness, and love, are important at every life stage. Intimate expression is especially vital at the end of life, when relationships with loved ones are time limited. Unfortunately, care providers often ignore the potential need for sexual expression, especially at the end of life. In this article, we consider current research on sexuality and end-of-life care and situate these two fields in an ecological framework. We explore how end-of-life sexuality and intimacy can be supported by practitioners in multiple nested contexts and provide suggestions for theoretically-driven interventions. We also provide reflexive considerations for practitioners.

Keywords

caregivers/caregiving hospice palliative care intimacy sexuality ecological systems theory

Sexuality and intimacy play an important role at every stage of life (Butler & Lewis, 2002) and include contact, tenderness, and love (Bowden & Bliss, 2009). Intimate expression is especially vital at the end of one’s life, when relationships with loved ones are time limited. Unfortunately, medical providers often ignore the potential need for sexual expression, especially at the end of life (Nyatanga, 2012; Stausmire, 2004).

Extensive research supports the assertion that sexual and intimate expressions are still important to people with terminal diseases (Gianotten, 2007; Hordern, 2008; Lemieux, Kaiser, Pereira, & Meadows, 2004; Panke & Ferrell, 2004; Zeiss & Kahl-Godley, 2001). However, the desire for sexual expression is often ignored at the end of life (Bowden & Bliss, 2009). Because many people at the end of life are older adults, this avoidance could be partially caused by cultural myths that sexual intimacy is important only for younger adults and that age is inevitably linked to decline in sexual expression (Gullette, 2011). Sexual intimacy also may be overlooked because sexual activity is sometimes too narrowly defined as sexual intercourse or a small range of related activities. Belief in these myths can mislead health-care providers into avoiding discussions surrounding sexual expression in end-of-life care (Nyatanga, 2012; Stausmire, 2004). Even if health-care providers do not believe the myths of late life asexuality or do not define sexuality simply as intercourse, they may still fail to address sexual expression due to their own discomfort with discussing sexuality or because of fear that they will embarrass their patients (Stausmire, 2004). Physical contact is invaluable for people during end-of-life transitions (Beckstrand, Callister, & Kirchhoff, 2006), and sexual needs must be assessed and addressed if patients express willingness to engage in the discussion (Stausmire, 2004).

In this article, we utilize an ecosystemic framework (Bronfenbrenner, 1994) to explore how practitioners can support end-of-life sexuality and intimacy in multiple nested contexts. We provide suggestions for health-care practitioners who work with people at the end of life to theoretically conceptualize and intervene at each level, including becoming more aware of their own beliefs and biases. A primary focus is on opening conversations about sexual expression and cocreating an environment in which appropriate sexual expression, if wanted, is welcomed. Individuals receiving care and their family members can also impact how sexuality is handled and may find this discussion helpful. However, we focus our attention on care providers here because we they have an ethical responsibility to consider all needs of patients, including sexual needs.

Although sexuality and intimacy can be defined separately, in this article, they are combined to facilitate a broader, more inclusive discussion. According to the World Health Organization (WHO, 2010), sexuality is defined as:
A central aspect of being human throughout life … it encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction. Sexuality is experienced and expressed in thoughts, fantasies, desires, beliefs, attitudes, values, behaviours, practices, roles and relationships. (WHO, n.p.)

Intimacy is an important element of the expression of sexuality (WHO, 2010). For the purposes of this article, the terms sexual expression and sexual intimacy will be used to refer to the range of ways that people express themselves sexually, which may or may not include behaviors normally considered explicitly sexual. Many health-care providers may think that considering sexuality is irrelevant when a person is in a poor state of heath; however, it may still be significant to clients regardless of what types of sexual expression seem physically possible.

The ecosystemic framework used in this article offers an expanded perspective within which to explore the literature on sexuality at the end of life. Initially developed as a perspective on childhood development, especially as it related to education (Bronfenbrenner, 1994), this theoretical lens has been applied to a wide array of topics as diverse as encouraging physical activity (Spence & Lee, 2003), community resilience after natural disasters (Boon, Cottrell, King, Stevenson, & Millar, 2011), and peer culture in higher education (Renn & Arnold, 2003). This article is the first to apply it to sexuality at the end of life. Our integration of literature allows us to identify multiple levels of systemic intervention for care providers and provide suggestions for theory-driven interventions to support sexual expression at the end of life. Further, drawing from clinical experience of the authors, one of whom works as a clinical social worker who has been employed in end-of-life care and as a sex therapist (K. A. M. S.) and others who work as marriage and family therapists (D. M. S. and A. L. F.) and one of whom has also worked in end-of-life care (D. M. S.), we provide reflexive questions for care providers working with end-of-life sexuality.

An Ecosystemic Framework for Sexual Relationships at the End of Life

Ecological systems theory provides a holistic framework for understanding multiple levels of influence on sexuality in end-of-life care, and conceptualizing how caregivers and advocates can intervene at each ecological level to support client-centered and client-preferred intimacy at the end of life. Bronfenbrenner’s (1994) ecological systems theory includes multiple nested layers: the individual, the microsystem, the mesosytem, the exosystem, the macrosystem, and the chronosystem. Each system impacts the other systems bidirectionally, including the environment impacting the individual and the individual impacting the environment. Below, we briefly describe each system by drawing on the model as it relates to ways adults may negotiate intimate relationships at the end of life and how formal caregivers can help. Following Figure 1 from the inside layer to the outer layer, this discussion moves from the individual within the microsystem to the macrosystem and then across the chronosystem.
Figure 1.
An ecosystemic framework for influences at the end of life, adapted from Bronfenbrenner (1994).

Individual

Individual health differences affect sexuality throughout life, including at the end of life. Physical changes that occur with age or disease can necessitate adjustments rather than negate sexual intimacy (Bell, 1992; Bentrott & Margrett, 2011; Gott, Hinchliff, & Galena, 2004). Aging-related health changes can impact sexual expression. These can include biological changes, such as in the hormonal system, vascular system, illness, and psychological factors. These can also include having limited access to sexual information, being exposed to negative attitudes toward sexual expression, and changes mental health (DeLamater, & Sill, 2005; Butler & Lewis, 2002). The changes explored below are changes that can happen at younger ages but are even more likely to be seen in clients at the end of life, either because of advanced age, as many people in palliative and hospice care are older adults, or because of disease processes.

A variety of health factors can impede both sex drive and sexual expression. There is a difference between a change in sex drive and a change in sexual expression, as one could have low sex drive and still engage in sexual expression due to a belief that such expression is important or due to the wishes of one’s partner (Price, 2014). One could also have a high sex drive and have one’s expression limited by one’s environment or beliefs. For example, although women often report a decrease in sexual desire as they age, sexual expression is closely linked to partnered status (Lindau et al., 2007).

Some older adults are affected by hormonal changes as they age, including a reduction of androgens in men and estrogens and androgens in women, that may result in a decline of general interest in sexual activity or other symptoms like vaginal dryness (Morely, 2006; DeLamater & Sill, 2005). Hormonal changes can also occur with certain types of disease treatments, including various types of cancer treatment. The onset of vascular disease, such as myocardial infarction, hypertension, atherosclerosis, and even diabetes, can also have a dampening effect on sex drive (DeLamater & Sill, 2005). Medications for hypertension and reproductive cancers can reduce sex drive as well. For example, cancers of the genital systems can have a negative impact on sexual expression by affecting both function and body image (Butler & Lewis, 2002). Even less severe conditions, such as discomfort from arthritis or back pain, can make sexual expression more difficult (Butler & Lewis, 2002). People often report asking their physicians sexual questions, but many times important questions do not get asked (DeLamater, 2012).

An individual’s attitude and psychological health influence sexuality. Attitudes toward sexual expression matter in terms of whether one’s sex life will continue into older age or changes in health status. For example, some people rate sexual expression as more important and some as less important (DeLamater, 2012; DeLamater, Hyde, & Fong, 2008; Redelman, 2008). People have different perspectives on the appropriateness of certain types of sexual expression. An example of different perspectives is seen in discussion of the morality of masturbation, which could be an option for both partnered and unpartnered people at most stages of life (DeLamater, 2012). People receiving care may also be exposed to the attitudes of workers who think that various types of sexual expression are not appropriate for various reasons, including moral reasons and biases relating to age and health status. Mental health and its treatment impact adult sexuality in a number of ways as well (DeLamater & Sill, 2005). Depression, for instance, reduces sex drive (DeLamater & Sill, 2005) as can a variety of types of medication for mental health issues. For example, the use of selective serotonin reuptake inhibitors to treat depression can reduce an individual’s sex drive (DeLamater & Sill, 2005). All of these individual issues can interact with other parts of the ecological system to affect sexual satisfaction (DeLamater et al., 2008). Sexuality is not only biological, it is also attached to emotional and psychological well-being, especially during the final stages of life (Redelman, 2008; Rothenberg & Dupras, 2010; Lemieux et al, 2004).

These health issues and a host of other individual issues at the end of life may reduce sexual desire and sexual expression individually and, when a partner is present, within a couple’s relationship. That said, individuals or couples may also have reduced sexual expression but be satisfied with the amount and types of sexual intimacy in their lives. Also, just as the environment can affect the individual, the individual can also impact the environment. Some individuals may navigate systems of care more easily, including people who are willing to ask questions or state sexual or intimate predilections, and some may be more reticent to bring up conversations even if they have requests or preferences.

Microsystem

As developmental decline progresses to an end-of-life stage, family members and other informal caregivers often need support from professional resources such as home health aids or hospice care if they plan to keep their loved one at home. Formal care providers then become an important piece of a terminally ill person’s innermost ecological system. At the end of life, it becomes even more essential for care providers to know how to support the need for intimate expression by terminally ill patients while still being aware of their own rights as professionals.

Microsystems directly connect and interact with the individual in the center of the environment (Bronfenbrenner, 1986), which in this instance is the person receiving end-of-life care. Both informal and formal caregiving support are typically part of this system. Informal support is care or resources provided by family members or close friends (Kemp, Ball, & Perkins, 2013; Williams & Dilworth-Anderson, 2002). Romantic partners provide a significant amount of informal support, although other family members, friends, or neighbors often also offer assistance, whether emotional, instrumental, or financial (Connidis, 2010). Formal support refers to services rendered by professionals such as home health aides, hospice care workers, support groups, and adult day centers (Kemp et al., 2013; Williams & Dilworth-Anderson, 2002). Both of these types of caregivers have an impact on an individual’s or a couple’s intimate expression. For this reason, it is important that the attitudes of caregivers, especially formal caregivers, are informed, and so they are less likely to simply apply their biases to those to whom they offer care.

Couple

Intimate partnerships can be supportive and deeply valuable to people at the end of their lives (Gardner, 2008). Because there are many changes occurring during the end-of-life process, individuals’ and couples’ attitudes about sexuality are likely to change. People have diverse preferences, and the older adult population tends to be even more diverse than the population at large. Types of partnerships might include marriages, cohabiting, same-sex partnerships, people living alone together in which two residences are maintained, partners who are dating, polyamorous relationships, and even “imaginary intimates,” which are partners who are no longer physically present about whom older adults may reminisce and fantasize (Connidis, 2006, p. 139). Considerations for imaginary intimates would be different than those for people who are present, as this might be considered to be more a part of one’s solo sex life. Nevertheless, assessing for the many variations in relationship status is crucial.

During the end-of-life process, couples may become nervous or assume the other does not want to discuss sexual activity during this phase of their relationship (Stausmire, 2004). This can lead to misunderstandings like healthy partners avoiding sexual intimacy for fear of hurting their partners and their partners in turn thinking that they are no longer attractive to the healthy partner (Stausmire, 2004). However, this is also a time when relationship closeness is deepened and sexual intimacy may transition from sexual intercourse to a broader understanding of sexual intimacy (Cagle & Bolte, 2009). At the end of life, couples may look for shared meaning in their lives and relationships (Gardner, 2008). Lemieux, Kaiser, Pereira, and Meadows (2004) interviewed individuals receiving palliative care and found that many of their participants reported a shift in the meaning and expression of sexuality. Couples who were once sexually active found new ways to remain intimate such as holding hands, dancing, caressing, touch, hugging, and kissing, and they found the new intimacy satisfying.

It is important for practitioners to consider that sexual expression may be a part of care planning at the end of life. For couples, this may mean couple therapy. It could also mean assuring that sufficient privacy for sexual expression is provided either for individuals or couples, such as being attentive to knocking before entering or coming up with a way to signal if the individual or couple is requesting privacy.

Family

Family is used here to mean not only one’s partner and one’s children but also nonblood related and nonlegal ties, known sometimes as families of choice (Weeks, Heaphy, & Donovan, 2001) or fictive kin (Riley & Riley, 1996). In this sense, friends could provide support to older adults at the end of life in much the same way that one’s other family members could. Whereas adult children may, for various reasons, feel uncomfortable with a parent’s sexual intimacy needs at the end of life, friends might be a better source of support due to having a peer relationship. Because family structures vary, we combine family and friend support in this section.

In the family structure, it is not only likely that familial attitudes and beliefs impact the sexual decisions made by the person at the end of life, but that the care recipient’s attitudes and beliefs influence the family’s perspective. Familial influence is bidirectional. If a family has a significant amount of instrumental control over their loved one’s care, as with more dependent adults and also often people at the end of their lives, the family can greatly influence their loved one’s intimate expression. For instance, in one case, a family was concerned about their parent’s involvement with a person of another race. They successfully had the elder removed from the nursing facility in spite of the protests of the elder (Cornelison & Doll, 2013). Often hospices and inpatient institutions have family meetings to plan care (Frankowski & Clark, 2009; Gaugler, 2005), and family preferences may be given precedence over the preferences of the patients, especially if the preferences or capacities of the person receiving care are not clear (Cornelison & Doll, 2013). Having a “loving will” lets families know what a person prefers before they are in a state that prohibits clear communication of preferences (Price, personal communication, June 6, 2015). Also, having the client clearly define whom they consider family can help in making caregiving choices, including whether to create legal documents that support a client-defined constitution of family.

Family members can serve as educators and support their loved one by encouraging sexual expression and thus improving their loved one’s chances of sexual satisfaction. In particular, family members can advocate for a family member’s right to sexual expression when consulted about sexual issues regarding their loved one (Cornelison & Doll, 2013). Being an advocate is not just expressing a desire to learn, it also has to do with being aware of how an older adult’s sexual intimacy needs might change over time and having a willingness to accommodate current needs.

It is best practice to discuss sexual expression in care planning including one’s family if older adults have agreed that particular family members would serve as main caregivers (Wornell, 2014). One reason families report visiting their loved ones in institutions is to help employees of the institutions to deliver sensitive and individualized care that is appropriate to the patient (Gaugler, 2005). The worst-case scenario is that no planning at all happens until a crisis occurs (Wornell, 2014). Whether the effect of family is more indirect, as in the case of people living fairly independently, or more direct, as in the case of institutionalized older adults with familial caregivers or adults in hospice with significant family involvement, family is likely to have an influence on sexual expression at the end of life.

Health services

Although care recipients may value continued intimacy while receiving palliative or end-of-life care, institutions and health services are not always amenable to the needs of intimate partners (Low, Lui, Lee, Thompson, & Chau, 2005). Hospital rooms often lack privacy, and sometimes the size of the hospital bed makes sexual intimacy difficult (Lemieux et al., 2004). This may be due to a discrepancy between practice and theory: although health-care providers understand there may be a need for older adults to remain sexually expressive and have emotional connections, they do not communicate with their patients adequately on this topic (Redelman, 2008). They may not be willing to explicitly give permission for couples to, for instance, lay in bed together or more. Health-care providers may have their own unacknowledged biases that hinder needed support.

Intervention in the microsystem

As depicted in Table 1, advocates and practitioners have multiple opportunities for intervention at the microsystemic level. For example, when working at the individual level, practitioners must consider how the client’s geographic location, class, race, gender, sexual orientation, and cohort impact development, attitudes, beliefs, and behaviors surrounding sexuality and intimacy. The practitioner can link clients with appropriate professional referrals. Finally, the practitioner needs to recognize his or her own preconceptions and reflect on his or her values and beliefs, perhaps by using reflexive questions such as those listed in Table 2.
Table 1.
Interventions at Each Ecological Level.

Individual • Ask clients about expressions of sexuality and intimacy in a sensitive but explicit way • Help clients to brainstorm alternate intimate expressions to fit their and their partners’ needs and abilities • Support clients in exploring their own feelings about illness and death • Normalize possible changes in sex drive and expression • Link clients to medical health-care providers who can assist with appropriate treatment that includes attention to sexual function • Educate on sexual changes due to medication and body functioning • Demonstrate willingness and ability to process conflicting values (desire for sexual expression vs. one’s religious values) • Identify ways that one may engage in sexual or sensual enjoyment if unpartnered (pleasurable touch including massage, self-touch, etc.) • Consider how the client’s geographic location (i.e., Southern vs. Northern, etc.); rural and urban upbringing; class; race; gender; sexual orientation; religious affiliation; cohort; and other individual, cultural, and familial factors impact development, attitudes, beliefs, and behaviors within romantic relationships

Microsystem • Cultivate trusting relationships with clients • Be aware of both strengths and challenges aging brings to sexual expression • Encourage adults to have a “loving will” or some expression of sexual preferences in or in addition to their living will • Assess how the client defines “family” and assist in getting legal documentation of important nontraditional family ties • Have a list of referrals for couple and family counseling • Include sexuality in family care plan if client consents • Educate families about sex and the end of life • Explore new ways to remain intimate (holding hands, dancing, hugging, etc.)

Mesosytem • Ask questions about sexuality in care planning • Support communication between people in the microsystem • Keep communication pathways open with health-care providers; discussions should be ongoing, not isolated • Give permission to talk about sexual expression • Offer information and provide specific suggestions • Conduct intensive therapy as needed • Make appropriate referrals for information or therapy • Continue permission seeking and giving at each step of the conversation • Develop approaches that improve a patient’s quality of life by supporting whatever level of sexual intimacy the person prefers • Include questions about sexual expression as a part of care planning • End discussion when requested by the older adult

Exosystem • Be aware of a client’s rights regarding sexual and intimate expression • Create policies for sexual expression in palliative care, hospice care, and hospital and nursing facilities and make sure staff and clients know the policies • Offer continuing education for practitioners around sex and aging • Offer sex education courses for older adult clients and older adults in the community • Discuss media depictions of sexuality and the end of life with clients, their families, and community members • Write letters to media outlets about their depictions of aging and sexuality

Macrosystem • Be aware of one’s cultural biases regarding older adult sexuality, declining health and sexuality, as well as death • Consider the practitioner’s own definition of sex and how it might be broadened • Attend and present at conferences regarding sex and aging • Stay updated on research on sex and aging • Conduct clinical research regarding sex and aging

Chronosystem • Increase knowledge on the developmental stage, cohort effects, and historical contexts of the client • Seek education about a life course perspective on sexuality

Table 2.
Practitioner Reflective Questions.

1. What are my beliefs about sexuality during late life?

2. What are my beliefs about sexuality at the end of life?

3. How do my beliefs about sexuality in late life and at the end of life compare and contrast?

4. How do I feel when I see older men and older women expressing intimacy on TV? Do my feelings differ between depictions of men and women? If so, how?

5. What are my reactions when I think about older adults in my own life as sexual beings?

6. What are my initial reactions when thinking of working with an older, sexually active couple during the dying process? Does this reaction vary when the couple is a same sex couple or a heterosexual couple? Married or unmarried?

7. What are my initial reactions when thinking about people not wanting to explore intimacy and sexuality at the end of life?

8. How might my own beliefs and values impact my work with couples during the dying process?

9. What stressors might I face in supporting client intimacy at the end of life?

10. How might the values of my workplace impact how I support client intimacy at the end of life?

11. How might the values of the larger culture influence how I support client intimacy at the end of life?

12. How might the personal, professional, and cultural beliefs I hold be influencing my understanding of late life sexuality and intimacy at the end of life?

13. Am I worried about advocating for end-of-life sexuality and how it might be perceived by the family members, my colleagues, or my work administrators?

14. What do I consider to be the rewards and benefits of advocating for end-of-life sexuality and intimacy?

15. Who or what are my resources in promoting end-of-life intimacy for my clients?

Mesosystem

The mesosystem consists of reciprocal communication between the microsystems: The individual, couple, family, and care providers all of whom have differing levels of influence (Bronfenbrenner, 1986). Communication is a key element for the continuation of sexual expression in couples (Jo, Brazil, Lohfeld, & Willison, 2007; Lemieux et al., 2004). Many people report developing even closer relationships with their partners during times of difficult health, with open communication being significant for developing these deeper connections (Jo et al., 2007).

Couples are generally hesitant to approach the subject of sexual intimacy with health-care providers and would prefer to be asked by their health-care professionals rather than bringing it up themselves (Jo et al., 2007). Most adults say that they do not ask sexual questions; but if they did, they would most likely ask their physicians (DeLamater, 2012). It is unclear if older adults receive information on adapting intimate practices from health-care providers, although many resources for adjusting sexual expression as one faces health issues are available through resources from books to online support groups to sex therapy (Price, 2014).

One useful model for health-care providers discussing sexuality is the extended PLISSIT model (offering permission, limited information, specific suggestions, or intensive therapy), which places importance on validating intimate relationships and giving permission to talk or not to talk about sexuality (Taylor, 2014). The PLISSIT model of sex therapy is a way of conceptualizing increasing degrees of support that could be offered to clients: giving permission to talk about and get support around an issue, offering limited information, providing specific suggestions, or conducting intensive therapy or linking a client with a therapist as needed (Annon, 1976).

Intervention in the mesosystem

Similar to the microsystem, there are many arenas of intervention within the mesosystem. For example, as shown in Table 1, advocates without training in sexuality could offer permission to talk about sexual expression and make appropriate referrals for information or therapy. Health-care teams could develop approaches that improve a patient’s quality of life by supporting whatever level of sexual intimacy the person prefers (Cort, Monroe, & Oliviere, 2004) and include sexuality in each aspect of care planning, beginning with assessment.

Exosystem

The exosystem is an environment with which the care recipient has indirect contact, such as the media. This system impacts the development of the individual in less direct ways than the micro- or mesosytems but still has an important influence. For example, health-care workers may not inquire about older adult sexual concerns due to a belief that older adults no longer engage in sexual activity. These beliefs might have been created in part by the media. Media and policies both impact how sexuality is viewed at the end of life, and these areas are important sites for intervention.

Media

Media messages form a profound backdrop to older adults and end-of-life sexual experiences, yet the impacts are difficult to quantify. The distorted depictions of death and dying in the media are often dramatic, focusing on ethical issues, pain control, and the resolution of family disputes rather than sexual intimacy. In reality, the process of dying can take days, weeks, or months, and those with terminal illnesses have good and bad days (Stausmire, 2004). On good days, even a person close to death may engage in intimate and sexual expression.

Media depictions also exclude the sexual expression of older adults, especially women (Gullette, 2011). Inaccurate media depictions negatively tint people’s expectations of sexual intimacy at the end of life. The combination of internalized ageist attitudes about sexual intimacy and death and dying can make it difficult for couples to connect and remain sexually intimate at a crucial point at the end of one partner’s life.

Policy

Patients receiving care through Medicare, for which all older adults over 65 qualify in the United States, have protected rights. These include the right to “dignity and respect,” which also involves respect for one’s sexual preferences (“What are my rights,” 2015). The right to dignity and respect also includes consideration of one’s privacy as long as one’s decisions are not infringing on the rights of other people residing or working in the facility (“What are my rights,” 2015). The rights of care recipients need to be measured alongside the rights of workers for a safe and supportive environment (Center for Practical Bioethics, 2006).

Hospices’ and other care organizations’ policies may affect how sexual expression is managed more so than laws (Center for Practical Bioethics, 2006). For example, an organization’s policy may be to share sexual information with family members during care planning, which a client may or may not be asked to approve (e.g., Wornell, 2014). While it is ideal for policies to be clearly stated at the beginning (Center for Practical Bioethics, 2006), many organizations do not have clear policies on sexual expression for staff members to follow or residents to be informed about when choosing the organization (Doll, 2013; Gray, 2015). Without clear guidelines, care providers are at risk of providing inconsistent actions with regard to sexual expression. Given the importance of end-of-life sexuality and intimacy, clear supporting policies are important in decreasing caregiver confusion and value bias (Singer, Martin, & Kelner, 1999). They can also help to reduce the possibility of an environment in which sexual expression is treated as a joke rather than as a serious issue. Feelings of embarrassment by health-care workers must be addressed. Treatment of sexual expression as laughable impedes clear dialogue that can assist in the creation of workable boundaries both for care recipients and providers.

Intervention in the exosystem

Policy development is a critical component of advocacy in the exosystem. As described in Table 1, practitioners can create policies in multiple arenas at the local level in the care setting, at the community-level through offering courses, or at the national level through letter writing to policy makers or media directors. Although media intervention is difficult, advocacy by professionals is both possible and necessary.

Macrosystem

The macrosystem includes attitudes and ideologies that affect couples’ expression of sexuality at the end of life. The macrosystem refers to beliefs circulated in the society at large, which indirectly but powerfully affect the lives of individuals (Bronfenbrenner, 1994). For all people, attitudes and ideologies of the dominant culture shape how the end of life is experienced in many ways, including in terms of sexual expression.

Attitudes and ideologies

The macrosystem includes cultural attitudes toward sex, aging, and death as well as cultural ideologies. In a cultural discourse marked by a strong emphasis on decline, the stigma of aging and sexuality can outweigh an understanding of the opportunities for growth as people age (Gullette, 2011; Pangman & Seguire, 2000). A range of cultural discourses exist on what aging means for sexuality. One prevailing theme is that older adults are, and should be, asexual (Butler & Lewis, 2002). A countertheme that has developed in response, and which still is restrictive, is that older people are hypersexual, which is usually couched as perverse, pathetic, or both (Hinchliff & Gott, 2008). These views limit older adults’ freedom to choose whether and how to engage sexually and can affect the way sex is talked about by caregivers.

A hypermasculine and heterosexist focus on sex as penetration may be part of how this discourse is created (Gullette, 2011). For instance, women tend to have a broader view of sexual behavior and include a wider range of activities in what they would consider to be “sex,” with penetration being only one activity and not one that is most likely to lead to female orgasm (Gullette, 2011). Their sexual activity tends to vary more with social and cultural influences than do men’s (Baumeister, 2000, 2004). Some researchers suggest that older adults especially can benefit from holding more flexible views of what sex is in terms of sexual satisfaction (Shaw, 2012), and this would also be true for people at the end of life experiencing significant health changes. Having access to a broad array of ways to achieve sexual satisfaction allows for behavioral variability that can be adapted to changing needs and physical capabilities (Butler & Lewis, 2002). Cultural attitudes and ideologies influence whether a person is able to shift one’s views on sex fairly easily or whether the person has a sense that one’s changing sexual needs and activities are pathological or shameful.

In addition to challenges with cultural ideologies about sexuality, challenges can exist around a general culture of avoiding the topic of death. Although death is perhaps a more acceptable topic than it was in the past as evidenced by classes on death and dying, more research on death and dying, and other more public markers of death such as the visibility of funeral homes, it is still arguably not a topic that most people prefer to think about (Corr, 2014–2015). The combination of two uncomfortable topics—sex and death—can make professionals feel less willing to invite or support important conversations.

Intervention in the macrosytem

The potential benefits of recognizing and challenging limiting cultural discourses for older adult sexuality are many. This is particularly true at the end of life. Practitioners must reflect on their own cultural biases regarding older adult sexuality (see Table 2) as well as death. Awareness raising in the macrosystem may include attending and presenting at conferences on human sexuality or health care or consuming or generating research on sex and aging.

Chronosystem

The chronosystem is the sense of cumulative history and transitions in one’s life. These transitions can catalyze developmental change throughout the life span (Bronfenbrenner, 1986). A shift from curative to palliative care is a significant transition marking an acknowledgment of the approach of death. The shift from thinking of continuing life-saving care to palliative care within hospice may make emphasizing intimate relationships and connecting with loved ones more important than ever (Singer et al., 1999).

A person’s cohort, generation, familial history, and broader societal events impact how end-of-life transitions are approached. Similarly, sexual understanding involves cumulative effects of one’s entire developmental trajectory (Bronfenbrenner, 1986). The end-of-life experiences an individual has witnessed will change the way that person thinks about her or his own journey to death. Assessing how one’s life experience also impacted her or his view of sexuality can be helpful in understanding a client’s sexual preferences.

Implications

Beginning with the individual and microsystem, clinicians and mental health practitioners play an important role as the first point of contact for care recipients and their families in regard to discussing issues of sexuality and sexual intimacy when they are receiving end-of-life care. In Table 1, interventions for practitioners at each level are offered. Building on the current scientific literature, utilizing an ecosystemic framework, and guided by clinical experiences of the authors (Kate A. Morrissey Stahl, Desiree M. Seponski, and Andrea L. Farnham), these suggested interventions can be helpful for an array of health-care workers including social workers, therapists, nurses, physicians, certified nursing assistants, administrators, and others who are engaged with people at the end of their lives and seek to improve awareness around sexuality as a dimension of end-of-life care.

Clinicians working “on the front line” in the microsystem with patients can, in particular, counter ageist attitudes and beliefs held by individuals, couples, and families during the therapy process. It is important for clinicians to examine their personal biases about sexuality, aging, and dying. Clinicians and academics alike have biases and assumptions that impact both clinical work and research. While it may not be possible to be aware of all biases and assumptions to provide ethical clinical services, it is imperative to have some level of awareness of one’s own beliefs and assumptions, so that one is not simply acting out these preconceptions or assuming that one’s clients share the beliefs. This awareness is particularly important for those in the dominant culture who typically reflect, often with unawareness, many of the invisible “-isms” such as racism, heterosexism, ageism, sexism, and so forth (Becvar, 2005). The process of working with clients who are at the end of life can trigger a clinician’s own positive and negative memories of the deaths of people they have cared about, including assumptions about sexuality and personal fears of death and dying (Davey, Murphy, & Price, 2000). Table 2 includes reflective questions that could help clinicians to start to be aware of their habitual ways of thinking about sexuality, the end of life, and aging.

Discussion

This article integrates existing literature on end-of-life care and sexuality within the theoretical framework of Bronfenbrenner’s ecological systems theory. This creation of a general map for approaching sexual expression at the end of life is an important first step. Useful next steps would include an empirical exploration of this model and the application of the theory with this population at the end of life.

In addition to benefits of addressing sexuality at the end of life, some challenges and risks exist. These include potential difficulties in assessing the cognitive state of patients and resulting ambiguity around consent and sexual expression. In addition, the need for efficient provider care may supersede a patient’s need for privacy in times of crisis. Further, health-care workers may be nonconsensually exposed to the sexual expression of patients, which requires training and ongoing consultation with care providers on the front line. Stigma barriers also exist, such as embarrassment or shame about discussing or demonstrating sexual expression. Working to achieve balance in these areas helps to overcome the risks of exploitation of partners, workers, and patients. The more well-trained health-care workers are to discuss sexuality without agenda pushing or becoming embarrassed, the more comfortable such conversations tend to be for people receiving care. Adequate training is needed to help to address the challenges and mitigate risks.

Conclusion

Many levels, from one’s individual body to one’s family and community to one’s culture and to one’s experience of time, impact sexuality in end-of-life care. Sensitivity to all of these levels is necessary when considering interventions. From an ecological perspective, people function based on both their biopsychosocial resources and the fit between people and their environments, both of which change continuously (Greenfield, 2012). Too often, a medical model of care looks at individual levels and possibly family levels without considering possible sources of support that could be offered on other ecosystemic levels. Also, it can be that sexual expression is not considered with certain groups who are considered a priori to be asexual. To provide comfort and optimal care during the end of life, it is crucial that caregivers are trained in ways to support the sexual intimacy and sexual expression of the people for whom they care.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Author Biographies

Kate A. Morrissey Stahl, MA, LCSW, works as a clinical social worker in private practice in Athens, GA, USA. She is a PhD candidate in Human Development and Family Science at the University of Georgia who holds certificates in Gerontology and Marriage and Family Therapy and specializes clinically in sex therapy.

Kyle L. Bower is doctoral candidate in the Department of Human Development and Family Science at the University of Georgia. As a gerontologist, her research focuses on individuality in older adulthood by exploring the intersection of age, sexuality, and gender identity as it changes throughout the life course, and is impacted by socio-historical contexts. Currently she is exploring the ways in which older individuals who identify as lesbian, gay, bisexual, and transgender/gender non-conforming (LGBT) form their identity and negotiate generative acts in later life.

Desiree M. Seponski, LMFT, is an assistant professor in the Department of Human Development and Family Science, Marriage and Family Therapy Program, and affiliate faculty in the Interdisciplinary Qualitative Studies Program, University of Georgia, and an adjunct faculty member at the Royal University of Phnom Penh, Cambodia. Her scholarship is broadly focused on culturally responsive therapeutic intervention processes and outcomes (US, International: Cambodia, Southeast Asia), with particular interests in refugee and marginalized families who have experienced poverty, trauma, and discrimination.

Denise C. Lewis is an associate professor in the Department of Human Development and Family Science, affiliate faculty at the Institute for Gerontology, University of Georgia, and an adjunct faculty member at the Royal University of Phnom Penh, Cambodia. She is a qualitative methodologist and conducts cross-cultural and transnational research with refugees and other marginalized families in the United States and elder-headed households in Cambodia. Her scholarship focuses on families’ household production of health, community strength and resilience, and the role of intergenerational relations on aging family members’ risk of social frailty. She contributes to an understanding of intersections of families, aging, culture and society by offering a view of diversity centered on lived experiences of immigrant/refugee and other marginalized families.

Andrea L. Farnham is a PhD candidate at the University of Georgia, and an associate licensed couple and family therapist with an emphasis is sex therapy. She is earning her PhD at Georgia in Human Development and Family Science with an emphasis is Marriage and Family Therapy. She is currently working as a sex therapist in training at Building Intimate Marriages, Inc. Her scholarship focuses on issues of sexuality and diversity and couple relationships.

Yasemin Cava-Tadik, MS, is a doctoral student at the University of Georgia, earning her degree in Human Development and Family Science. She received her MS from the University of Cincinnati in Educational Psychology and her BA in psychology in Turkey.

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Individual	• Ask clients about expressions of sexuality and intimacy in a sensitive but explicit way • Help clients to brainstorm alternate intimate expressions to fit their and their partners’ needs and abilities • Support clients in exploring their own feelings about illness and death • Normalize possible changes in sex drive and expression • Link clients to medical health-care providers who can assist with appropriate treatment that includes attention to sexual function • Educate on sexual changes due to medication and body functioning • Demonstrate willingness and ability to process conflicting values (desire for sexual expression vs. one’s religious values) • Identify ways that one may engage in sexual or sensual enjoyment if unpartnered (pleasurable touch including massage, self-touch, etc.) • Consider how the client’s geographic location (i.e., Southern vs. Northern, etc.); rural and urban upbringing; class; race; gender; sexual orientation; religious affiliation; cohort; and other individual, cultural, and familial factors impact development, attitudes, beliefs, and behaviors within romantic relationships
Microsystem	• Cultivate trusting relationships with clients • Be aware of both strengths and challenges aging brings to sexual expression • Encourage adults to have a “loving will” or some expression of sexual preferences in or in addition to their living will • Assess how the client defines “family” and assist in getting legal documentation of important nontraditional family ties • Have a list of referrals for couple and family counseling • Include sexuality in family care plan if client consents • Educate families about sex and the end of life • Explore new ways to remain intimate (holding hands, dancing, hugging, etc.)
Mesosytem	• Ask questions about sexuality in care planning • Support communication between people in the microsystem • Keep communication pathways open with health-care providers; discussions should be ongoing, not isolated • Give permission to talk about sexual expression • Offer information and provide specific suggestions • Conduct intensive therapy as needed • Make appropriate referrals for information or therapy • Continue permission seeking and giving at each step of the conversation • Develop approaches that improve a patient’s quality of life by supporting whatever level of sexual intimacy the person prefers • Include questions about sexual expression as a part of care planning • End discussion when requested by the older adult
Exosystem	• Be aware of a client’s rights regarding sexual and intimate expression • Create policies for sexual expression in palliative care, hospice care, and hospital and nursing facilities and make sure staff and clients know the policies • Offer continuing education for practitioners around sex and aging • Offer sex education courses for older adult clients and older adults in the community • Discuss media depictions of sexuality and the end of life with clients, their families, and community members • Write letters to media outlets about their depictions of aging and sexuality
Macrosystem	• Be aware of one’s cultural biases regarding older adult sexuality, declining health and sexuality, as well as death • Consider the practitioner’s own definition of sex and how it might be broadened • Attend and present at conferences regarding sex and aging • Stay updated on research on sex and aging • Conduct clinical research regarding sex and aging
Chronosystem	• Increase knowledge on the developmental stage, cohort effects, and historical contexts of the client • Seek education about a life course perspective on sexuality