Sexuality in Older Adults Receiving Palliative Care: A Fundamental Dimension through the End of Life

Isabelle Wallach ^1,2,*, Julie Beauchamp ^2,3, Tamara Sussman ^2,4, Arianne Laplante ¹, Patrick Durivage ²

1. Department of Sexology, Université du Québec à Montréal, C.P. 8888, SUCC. Centre-Ville, Montréal (QC) H3C 3P8, Canada

2. Center for Research and Expertise in Social Gerontology, CIUSSS West Central Montreal, Montreal, Canada

3. Department of Psychiatry and Neurosciences, Université Laval, Quebec City, Canada

4. School of Social Work, McGill University, Montreal, Canada

* Correspondence: Isabelle Wallach

Academic Editor: Ines Testoni

Special Issue: New Dimensions in Palliative Care for Older People

Received: October 08, 2025 | Accepted: February 05, 2026 | Published: February 11, 2026

OBM Geriatrics 2026, Volume 10, Issue 1, doi:10.21926/obm.geriatr.2601335

Recommended citation: Wallach I, Beauchamp J, Sussman T, Laplante A, Durivage P. Sexuality in Older Adults Receiving Palliative Care: A Fundamental Dimension through the End of Life. OBM Geriatrics 2026; 10(1): 335; doi:10.21926/obm.geriatr.2601335.

© 2026 by the authors. This is an open access article distributed under the conditions of the Creative Commons by Attribution License, which permits unrestricted use, distribution, and reproduction in any medium or format, provided the original work is correctly cited.

1. Introduction

Long considered non-existent, older adults’ sexuality has elicited growing interest over the past two decades with numerous studies exploring the relationship between aging and the expression and transformation of sexuality. These studies, however, have tended to focus on two specific sub-populations: healthy autonomous baby boomers, and older adults living in long-term institutional care. While explorations of sexuality have begun to emerge in palliative care contexts, studies conducted in these settings have largely focused on the attitudes of professionals. Moreover, among the rare studies that have explored the experiences of sexuality from the perspective of people with incurable conditions or at end of life, to our knowledge, none have focused specifically on the experiences of older adults. This lack of attention from both fields of study (aging studies and end-of-life research) may be linked with three intersecting issues: the overall invisibility of sexuality and sexual expression in societal discourses, the tendency to de-sexualize frail older adults [1,2] and the particular discomfort elicited when associating sexuality with death [3]. As such, attending to the sexuality of older adults in palliative care means tackling three intersecting taboos [4].

Acknowledging the sexual needs and experiences of older adults with terminal diagnoses is essential, to offer comprehensive care at end of life. Indeed, multiple authors have suggested that sexuality ought to be taken into consideration in palliative care settings given the holistic approach underpinning approaches to palliative care [3,5,6]. Yet, as the literature on professionals’ attitudes makes clear palliative care practitioners rarely view sexuality as an important issue, constituting a major barrier to addressing the topic [7,8,9,10]. Certain studies, have further revealed ageist and ableist biases, leading to fixed beliefs that sexuality is a less relevant subject to address with older adults than with younger populations in palliative care [11,12]. This process of desexualization, positions older adults as asexual bodies with no sexual support needs [12]. To deconstruct these biases and develop more inclusive practices of care, it is essential to examine how older adults with terminal diagnoses and those in palliative care relate to sexuality and sexual expression.

The limited body of work attending to sexuality at end of life suggests that sexuality can occupy an important place in the lives of people receiving palliative care, and that illness can have both negative and positive impacts on sexuality. Studies have shown, for example, that the physical symptoms associated with serious illness and its treatment such as pain, fatigue, nausea, erectile capacity, vaginal dryness, and limited sex drive, can impact sexuality [7,13,14,15,16]. Studies have also highlighted psychological and relational impacts associated with serious illness, including body image concerns, difficulty communicating with partners about sexuality, guilt linked with the incapacity to engage in sexual activity, feeling that one’s relationship has an expiration date, and disconnect between partners [7,14,15]. Despite these challenges, studies have suggested that people with terminal conditions can suffer further at end of life when their desire for physical and sexual intimacy is overlooked [14,17]. It has also been found that sexuality and sexual expression can provide psychological and physical benefits at end of life including increases in comfort, self-esteem, coping capacity, pain-relief, and sleep patterns… [18,19]. At the relational level, sexuality may offer an opportunity to connect or reconnect with intimate partners [17,19].

In terms of aging, sexuality, and end of life, results from two studies that peripherally addressed the topic, offer contradictory conclusions. For example, Keleman and colleagues, who studied adults in palliative care, suggested that illness had a more significant impact on intimacy for younger people than it did for older people, in part because the latter population felt “too old” for intimacy [14]. Conversely, Matzo and Hijjazi [20], who conducted a study with 15 hospice patients, highlighted that interest in sexuality did not necessarily diminish with age, as some of their participants who were 80 years and older retained an interest in sexuality. These two divergent interpretations and observations affirm the equivocal state of the knowledge base on aging, end of life, and intimacy.

The rare studies that have explored sexuality amongst people living with terminal conditions, highlight that sexual expression can take on many forms, and that it may be redefined when end of life is looming. More specifically, while some studies have found that sexual expression may remain focused on sexual intercourse and genital activity [11,18] reflecting life-long patterns [20], others have noted that genital sexuality tends to become decentered and replaced by a greater focus on tenderness, non-genital physical contact, and emotional connectedness during advanced illness [14,17,19].

Overall, the limited literature on people’s experiences with serious illnesses and palliative care suggests that sexuality may both retain its importance and shift in form and expression at the end of life. Yet, the few studies that have accounted for age have produced contradictory results. Aiming to add to the limited literature, the present study seeks to explore older adults’ experiences with sexuality when living with serious illness or receiving palliative care. More specifically the study explores the place of sexuality in the lives of older adults with terminal conditions, the forms of sexuality expressed by them, and the challenges this population may face regarding their sexuality.

2. Materials and Methods

Our study employed an interpretive qualitative design, an approach recognized for eliciting in-depth understandings of subjective experiences of complex phenomena and of the meanings attributed to them by those who live them [21,22,23]. The study, which was informed by semi-structured individual interviews, was further guided by the principles of reflexive thematic analysis, which emphasizes researchers’ subjectivity and their active role in data production and interpretation [24]. Our interpretive paradigm calls on us to position ourselves as critical scholars in the fields of sexology, social work, and aging. While these perspectives have invariably shaped all stages of the study, a process of reflexive dialogue allowed us to track, discuss, and critically examine our interpretative decisions, so as not to overshadow participants’ accounts.

2.1 Recruitment and Sampling

Participants were recruited from three different palliative care programs in the Montréal and Montérégie regions of Québec: palliative care hospital units, palliative care in-home programs, and palliative care hospice day centers [25]. The first two types of programs are operated by the Québec public health and social services network. They provide free medical and psychosocial services (social work, occupational therapy, nursing) to Quebec residents with a valid health card who have been medically assessed as having a life expectancy of six months or less. The third type of program is operated by community organizations and serves people with incurable diseases who are at advanced stages of a terminal illness (i.e. not solely reliant on prognostication). Services offered include individualized paramedical and psychosocial services (spiritual accompaniment, acupuncture, massage therapy, music therapy, animal-assisted therapy, social work), as well as group services, such as support groups, workshops, and creative activities. This program was added as a site following three years of effort recruiting participants in hospital and home care environments. We understand these challenges to be reflective, in part, by the taboo nature of the topic, and the resultant discomfort professionals experienced approaching potential participants [12]. We also acknowledge the potential impact imposed by the COVID 19 pandemic which placed additional restrictions on in person access and staff capacity.

Participants were deemed eligible for study participation if they were: aged 65 or older, receiving services from a participating palliative care program, able to express themselves in either French or English and alert enough to participate in an interview. A total of 10 participants were recruited including two from hospital centers, one from home care programs, and seven from hospice day centers. Participants ranged in age from 69 to 86, with an average age of 76 years. More details on the sociodemographic characteristics of participants are presented in Table 1.

Table 1 Characteristics of participants.

2.2 Data Collection

We conducted one-hour semi-structured interviews with participants. While the interview guide explored three principal themes: (1) experiences of sexuality; (2) care professionals’ communication and attitudes in relation to sexuality; and (3) the impact of palliative care services on sexuality, the present article focuses on responses related to experiences of sexuality.

Nine interviews were conducted in person and one was conducted virtually using the Zoom platform (UQAM institutional license). Some participants were interviewed in two parts, to prevent fatigue and to support the participation of people with limited stamina.

At the beginning of each in-person interview, participants were given all relevant information about the study and were encouraged to ask questions before signing a consent form. For the participant who was interviewed remotely, consent was recorded orally. With consent, all interviews were digitally recorded and transcribed.

Participants received $25 CAD in compensation, either in cash or in the form of a gift card.

2.3 Data Analysis

All interviews were digitally recorded, transcribed verbatim and thematically analyzed using an adapted reflexive approach [24,26]. In the first stage of familiarization, two authors read the transcripts in full, and developed a preliminary codebook that appeared to closely resemble the sentiments expressed by participants. Codes developed at this stage included: “importance of intimacy and sexuality”, “experiences of intimacy and sexuality”, “sexual desire”, and “elements influencing intimate and sexual experiences”. This initial codebook and all transcripts were imported into NVivo qualitative analysis software (Lumivero, version 14) [27]. In subsequent stages of analysis, we reviewed initial codes and their associated extracts to begin to identify possible meanings and patterns between and within codes. The first and fourth authors carried out this iterative process by individually reviewing coded data and analytic memos, and by engaging the larger team in discussions around analytic choices. Our reflexive discussions and memoing generated a set of interpretive themes and associated definitions thought to broadly and comprehensively capture the essence of participants’ experiences around sexuality and sexual intimacy. In the final stages of analysis, the first and fourth authors crafted and circulated a report of the data to the larger team. This final stage of report writing served to further consolidate the analysis, as it allowed the team to articulate connections between themes, eliminate redundancies, address any interpretative discrepancies, and consider the evolution of the findings alongside the study objectives The two interpretive themes emerging from this process are discussed in the following section.

2.4 Ethics Statement

This study was conducted in accordance with the standards of the Tri-Council Policy Statement for Ethical Conduct for Research Involving Humans [25] and was approved by the Research Ethics Boards of the participating public health network wherein the research was conducted and the Université du Québec à Montréal.

3. Results

The interpretive analysis of data generated two interrelated themes that together represented participants’ experiences with sexuality at end of life: “Sexuality partially or entirely excluded from (the end of) life”, and “Intimacy and sexuality integral to (the end of) life”. Our analysis further suggested that these themes could be experienced simultaneously or sequentially, with one theme holding relevance at one time point, and the second holding relevance at another time point. Moreover, in certain cases, an association between participants’ experiences with each theme was observed, with experiences falling under the first theme affecting subsequent experiences relevant to the second theme.

3.1 Sexuality Partially or Entirely Excluded from (the End of) Life

The testimonies of multiple participants suggest that certain forms of sexual expression, dimensions of sexuality, and/or sexuality in and of itself, were no longer part of their lives. Their accounts further intimate that this partial or total exclusion of sexuality, may be imposed by a partner, shaped by their subjective experience at end of life, or stem from the physical effects of illness.

3.1.1 Cessation of Sexuality with a Partner Imposed by the Relationship Situation

Some participants emphasized the role their partners played in their lack of sexuality. Widowed participants, for example, emphasized how the loss of their partner affected their sexual life. These participants recounted how they initially suffered because of the forced cessation of sexual relations with their partner, which they experienced as a mourning of their sexuality. Their accounts further suggested that over time, they became progressively accustomed to their new reality, such that they no longer experienced sexual needs.

At the beginning, I would go to my barn and I would scream or I would cry. And I would let out my pain and my rage in there. And then after that, it changed, my pain, to not have it with me anymore. And that’s it. I passed through a time when I needed to masturbate. And then after that it… it’s like behind me. I don’t have that need. (P6, female, aged 80).

The mourning of sexual activities was also activated when partners no longer wished to maintain a shared sexuality, either for personal reasons or because of relationship dynamics. This situation was described as a source of frustration, requiring adaptation by participants who stated that they would have liked to maintain their sexual relations with their partner. For one participant, this process while initially frustrating, no longer elicited negative emotions.

Me and my partner, it’s been a long while that we haven’t had a sexual relationship, it’s been maybe 20 years. So, it’s not me necessarily, it’s him telling me that he’s got less interest, that he doesn’t think about it. At first, I found that very hard, but over time, you know, I’ve accepted it. (P4, female, aged 70).

Although the cessation of sexual activity led to the disappearance of sexual desire and an acceptance of the situation for some participants, for others this ending still generated present day suffering and loss as this participant expressed:

Interviewer: And how do you feel about the end of your sexual activities, with your partner?

Participant: Well, I find it kind of sad. I mean, I’m disappointed. It’s disappointing! What can I do about it? I’ve made a lot of attempts by now. We’ve talked about it lots and lots. To keep going like that, talking about it—no! It’s like a taboo subject now. (P8, male, aged 86).

While death and relational trajectories caused the erasure of sexual intimacy for some, one participant connected the cessation of all sexual intimacy between himself and his partner to his illness and care needs. His testimony, which is extracted below, illustrates how his bodily changes transformed him, in his partner’s eyes, from an object of desire, to one of care. His account conveys the major impacts his cancer had on his relationship with his spouse, who was compelled to provide him with physical care that challenged all possibility of sexual intimacy between them.

When someone’s sick, it’s like don’t touch him, he’s poisoned. A distancing happened between the two of us [...] I wore a bag for my stool. It was my wife who changed the bag, who cleaned it and put on another bag [...] That’s no kind of life. It’s not a way to live, to bring a couple closer together [...] Me, now… sexual relations, since I learned I had cancer, since I got my bags, it’s finished. Touching, that’s finished now, there’s nothing anymore, now [...] Me, what I would like, even though I’m sick, is for my wife to spend, in the evening, a half hour beside me in bed. That’s what I would like the most. But I can’t make her do that. (P5, male, aged 75).

3.1.2 A Distancing from Sexuality

Some participants’ testimonies reveal their own distancing from sexuality, specifically in terms of genital activity and sexual intercourse with their partner. These participants seemed to consider that there was no longer a place for sexuality in their lives, due to the fact that they were at a terminal or very advanced stage of illness. While this distancing from sexuality may be the result of changing priorities, our analysis suggested that it was also rooted in internalized ageist and ableist and biases.

Multiple participants recounted that sexuality had been relegated to the background of their existence, following the diagnosis of severe illness or because they knew that they were at an advanced stage of illness with little time to live. These participants recounted how sexuality had become secondary to other concerns in their lives, such as their relationships with their loved ones, and the resolution of material issues, as the following testimony demonstrates:

Interviewer: “And during your treatments, was sexuality something that was still important for you?”

Participant: “No. It was papers, my will, seeing the people around me, giving away my furniture”. (P2, female, aged 69).

Participants who were not in a relationship, appeared to discount any possibility of having new sexual or intimate partners because of their status as people at a terminal stage of illness. This sexual self-exclusion was sometimes experienced alongside a change in priorities, as was the case with the following participant.

Participant: I always thought the day I can’t have sex is the day I wanna die, but I’m still here, [laughs] and I haven’t had sex for about five years now.

Interviewer: And what are your thoughts about this?

Participant: Well, I’m a very realistic person, I understand my condition and it might be unfair to go into a sexual relationship in the state I’m in. I’m not saying that I cannot have a relationship but right now, as much as I wanna have sex, I don’t even know if it’s viable [...] But it’s not my main focus now. My main focus is staying alive for my daughter and just being around for her. (P1, male, age unknown).

In some cases, sexual self-exclusion also appeared to be rooted in the dual status of a person with an illness and an older adult, as is depicted by this participant’s account.

I’ll tell you it’s only last week for the first time that I talked with someone here and that I felt: “oh, you know, that man, he might have interested me.” He was the first person with whom I felt maybe that, oh, if I’d been younger, I would have maybe gone a bit further. Or if I wasn’t sick. (P10, female, aged 80).

3.1.3 Sexuality Made Impossible by Illness

Another experience shared by multiple participants was a feeling that the physical manifestations of illness, whether in terms of symptoms, or the effects of treatment, prevented them from continuing to feel, express, or live their sexuality even though they would have wanted it to continue.

A participant whose illness appeared to have annihilated all possibilities of sexual expression, testified to a feeling of powerlessness in the face of the situation. When asked what impact hospitalization in a palliative care unit had had on the possibility of living her sexuality, she answered:

“I don’t think that palliative care has anything to do with this… It’s the diseases, I have three terrible diseases. They took over… my whole body, I have no way of protesting.” (P3, female, aged 83).

Other participants spoke of the effects of illness on their sexual desire, which disappeared progressively, as these participants state:

“I think that it’s Parkinson’s disease that did it. Even if you take dopamine pills, it’s not the same thing as… It’s the desire that disappears little by little. So, you don’t feel desire, you don’t feel desire.” (P10, female, aged 80).

Another participant recalled the time when his cancer, weakened him severely, preventing him from experiencing physical sexual desire.

I wasn’t in the right shape, taking a shower was a whole activity, you know. Just going out of the house, going outside, it would take everything, and so… [...] The head was still all there for that [sexuality], but it’s certain that, probably the desire wasn’t there, because I just wasn’t in the right shape, to have desire [laughs] you know. (P7, male, aged 70).

For yet other participants, sexual desire was present, but their illness or physical symptoms made it impossible for them to self-satisfy their drive as depicted by these two participants, who were no longer able to masturbate:

“Before, I used to masturbate, not that much, but once or twice a month, maybe? But you have to be in shape. The energy is lacking.” (P2, female, aged 69).

“I tried to masturbate, but I’ve got lung cancer and I got very, very short of breath. And then I stopped, because I was too much out of breath. So, I told myself: ‘I’m not gonna knock myself out for that” (P9, male, aged 71).

3.2 Intimacy and Sexuality Integral to (the End of) Life

While many participants emphasized the exclusion of sexual expression from their lives, almost all participants (with one exception) simultaneously expressed that intimacy and/or sexuality continued to occupy a place in their partnerships, lives, and/or minds.

3.2.1 The Importance of Intimacy with a Partner

Participants with partners emphasized the importance of retaining some form of physical or relational intimacy such as caressing, hugging and kissing. These overtures of closeness, while physical in nature, were not always seen as sexual expressions. Nonetheless they were viewed as increasingly important to preserve amidst what was otherwise seen as a loss of sexual expression as depicted by a number of participants.

“Well, sexual relations, we don’t have anymore together. It’s the only thing there is. We hold each other’s hands.” (P5, male, aged 75).

Participant: And so now, since a year, it’s [name of current partner]. But it’s not sexual. We sleep together, but it’s not sexual, it’s tenderness, hugs [...]

Interviewer: And when you were at home, did you see him in person sometimes?

Participant: At least once every other week. There was tenderness, we watched TV together, hand in hand, but nothing sexual. Hugging, our heads touching. It’s very comforting to me. (P2, female, aged 69).

And now as for what’s there at the moment, at 70 years of age, I find we’re close in a different way, you know we’ll hold one another, we give each other hugs, often he’ll hold my hand [...] So I can tell you that side of it, I’m speaking only for myself, sexually it’s… It isn’t there anymore. It’s holding one another, holding hands. (P4, female, aged 70).

Some participants described the importance of relational intimacy, namely the feeling of being united by closeness and a deep connection, which they experienced by spending valued time with their partners. As was noted for physical tenderness, participants drew parallels between this shared connection and sexual relations, perceiving equal but different value in both.

But… there are people who think that… it’s only sex that counts. But, but for me, it’s the other person, it’s being together, feeling good together, it’s simply spending time together. (P5, male, aged 75).

There was a time when we’d say that at two-thirty in the afternoon he would come back into the house and we would have coffee, we would feed little biscuits to our dog. So, you know at least I have those little moments, I’m not demanding now you know. And we’ll make dinner together, and do the dishes. I find that is important now also, as important as sexuality in the end. (P4, femme, 70 ans).

3.2.2 Physical Sexuality, Experienced or Aspired to

Many participants revealed that they continued to feel sexual desire and accord importance to genital activity or physical sexuality despite changes brought on by aging. Thus, although they mentioned a contraction of certain dimensions of their sexuality (desire, frequency of sexual activity) due to their advancing age, participants expressed that their sexuality remained important and active.

“Yes, sexuality is important, even at my age! [...] Sexuality is there. The desire is still there, not like when you’re 20 years old, but at my age… It’s still present.” (P8, male, aged 86).

One participant, who was described earlier as having lost his desire of physical sexuality due to illness, upon recovery, spoke of a revived importance of physical sexuality despite some changes due to age.

“It’s certain that it’s not like when you’re 20 years old now, but it’s just as important, even if it’s less frequent. For sure, we’re aging, we’ve put on weight… [laughs]. There’s lots of… but it’s, I don’t think it changes all that much.” (P7, male, aged 70).

The same participants reported that they continued to engage in sexual activities with a partner or alone. One participant stated that solitary sexual practices compensated for the impossibility of practicing sexual relations with his spouse:

Interviewer: If you feel comfortable doing so, can you talk about the ways in which you express yourself sexually, today?

Participant: Today, I masturbate. The frequency… it depends. You know, it’s on a surge of libido, still, when you get [laughs] [erections]. You know, I came into the world with this here! [...] So now, for sure today I have certain needs... I accept it and I masturbate. (P8, male, aged 86).

The statements of a widowed participant illustrate both a desire for sexual or sensual closeness with a partner, and the impossibility of acting on it. Although he had recently begun an intimate relationship with another man, he did not feel sexual attraction toward him, which prevented him from living the sexual experiences to which he aspired.

“Yes, I mean I’d be willing to have sex, but I don’t. [...] What I miss is kissing [laughs]. Kissing! Sex as such, I don’t really miss it, but kissing, kissing someone who I find beautiful, who I love” (P9, male, aged 71)!

3.2.3 A Sexuality Experienced in Thought

Another way sexuality can remain integral to the lives of people in advanced or terminal stages of illness, is through more internalized modes of expression. It may thus continue to find expression as a part of life, but in the form of thoughts, dreams, and fantasies.

Multiple female participants reported experiencing an inner sexual life which manifested as desire and was confined to the realm of fantasies. Some described how their desire emerged when they felt attracted to someone, as was the case for two participants, below.

Participant: I have met somebody… the staff. (Interviewer: Here?) Yeah. I didn’t express any desire, but I was very attracted. It felt good. I was waiting for the time to see him. Because, he was working here, I can’t make any… no.

Interviewer: But you felt something?

Participant: Yeah.

Interviewer: Would you say that it’s desire that you felt?

Participant: Yeah, probably.

Interviewer: Does it happen often?

Participant: Every day, when he works (P3, female, aged 83).

If I think about masturbating, or something like that, sometimes I think about it and then I, I won’t perform the act. [...] Three, four, five times a year, maybe. It’s not something that’s, that’s daily, regular. Which doesn’t prevent me, if I see someone good-looking, from thinking about it, you know, from remembering. (P10, female, aged 80).

One participant who was single and at an advanced stage of illness, mentioned memory as a means of experiencing sexuality. This participant felt that it was no longer possible for him to become physically involved in a new relationship:

“If I could have it, I would be there in a minute. But I realized that’s not happening today [...]. Now it’s just a fantasy, it’s not reality anymore. I can only remember… my past.” (P1, male, age unknown).

One of the participants recounted having erotic dreams on a regular basis, which she saw as a way of compensating for her physical incapacity to have sexual relations.

Interviewer: And so, yourself, sexuality, for you, you don’t think about it anymore?

Participant: No, I think about it. This week, it had been a while, twice I dreamt that I was making love. With two different men! [laughs] [...] I know I wouldn’t be able to. I don’t have the energy for love-making. Because that is energy. So, I dream. It’s perfect. (P2, female, aged 69).

4. Discussion

The present study sought to document the place that sexuality occupies in the life of older adults at an advanced or terminal stage of illness, including the ways it is expressed. The study also aimed to identify and deconstruct ageist and ableist stereotypes that render older adults with severe illnesses as asexual due to assumptions about the lack of interest and importance of sexuality at the juncture of old age, illness and mortality. Ultimately, our study aimed to identify potential issues this population faces in relation to sexuality, and offer direction for palliative care professions and researchers on possible avenues of support and investigation.

The study findings reveal that the experience of sexuality in older adults at advanced or terminal stages of an illness, is both complex and marked by contradictions. Participant accounts centered around two opposing themes—Sexuality excluded from life and Sexuality integral to life—with most participants identifying both types of experiences at different time points in their illness trajectory or around different forms of sexuality. A number of factors may explain why the discourses of participants may simultaneously straddle both experiences or why participants’ views diverged. This apparent contradiction may stem from people’s varying conceptions of sexuality. Multiple participants appeared to view sexuality and intimacy in binary terms, reflecting a dichotomization between genital activity and non-genital expressions of tenderness. This opposition may be linked with two divergent conceptions of sexuality, documented in previous studies of older adults’ sexuality: one being a narrow view focused on genital sexual practices, the other representing a holistic perspective in which sexuality also includes non-genital forms of sexual expression, such as affectionate gestures and emotional connection [12,28]. The narrow view of sexuality held by participants who made a strict distinction between intimacy and sexuality, may find its roots in the predominant sociocultural construction of sexuality, according to which the only “real sex” is one based on male-female penetration, reflecting ageist, ableist, and heteronormative sexual norms [12,28].

Moreover, for multiple participants, there was a disparity between the sexuality they longed to experience, and the sexuality they could experience. This gap between the aspiration to experience sexuality, and the inability to do so, echoes findings reported in other studies [14,17]. The variation in illness related symptoms may explain why some participants described sexuality as both present and absent in their lives. One participant stands out as exemplifying this dual experience. First, he described acute episodes of illness that had weakened him severely, resulting in the cessation of his sexual activities and the disappearance of his feelings of sexual desire. However, he also spoke of the marked improvement in his health following treatment, which allowed him to reclaim a sexuality comparable to that which he had experienced before cancer. His narrative illustrates the importance of viewing sexuality over time, and within the context of a life history, a dynamic also reported by Matzo and Hijjazi [20].

Advancing the literature beyond that of an individual pattern, our analysis, also situates the loss of genital activity within a broader relational context. More specifically, our analysis suggests that the cessation of sexual activity with a partner, may come about through the death of a partner or longstanding relationship issues that predate illness severity. In certain cases, the time elapsed since that cessation, allowed participants to grieve their shared sexuality, providing them with a measure of protection from the difficulties that severe illness may have otherwise elicited in relation to sexuality. In other circumstances, the forced end of sexual activity with their partners, resulted in current and silent suffering, highlighting an area of potential intervention.

Our study also stressed the impacts of severe illness and its treatment in terms of their physical effects on participants’ capacity to experience sexual desire or to engage in certain sexual practices, corroborating results reported elsewhere [7,13,15]. Although the majority of participants appeared resigned to accept such limitations, professional acknowledgement and support may have opened up opportunities for processing the loss associated with these limitations and/or exploring solutions if desired by participants.

Illness in its terminal stage may have effects of another order due to its social construction and associated biases. Indeed, our findings show that multiple participants appear to undergo a process of desexualization, whether originating with their partner or through an internalization of ableist biases. The testimony of a participant who connected the loss of sexual or physical intimacy with the body care his spouse was required to perform, illustrates this phenomenon and the resulting suffering that the person with a severe illness may experience. This finding appears especially noteworthy given that studies of changes to relationships and sexuality brought on by caregiving, most often concentrate on the caregivers’ experiences [29,30] excluding the experiences of those receiving body care. By focusing on older individuals with life limiting illnesses our analysis illuminates how desexualization can be internalized resulting in self-exclusion. This process of no longer perceiving oneself as a sexual being or as a candidate for an intimate relationship has been reported elsewhere with regards to adults facing terminal illnesses [19]. We contend that this sexual self-exclusion is rooted in the internalization of ableist biases, which hierarchize bodies and value only those that correspond to predominant norms of functionality and beauty [31]. Furthermore, in the case of one participant, it emerged that internalized ableist biases intertwined with ageist biases which tend to deny older adults the right to sexuality [12,32].

Our results also suggested that sexuality, while potentially transformed, can remain an important dimension of the lives of older adults at an advanced or terminal stage of illness. In keeping with other studies, our findings revealed the importance of physical and emotional intimacy held by this population [17,19]. However, our study further illuminated that genital activity, which is often dismissed as unimportant in the face of aging and illness, can remain central for some older adults at advanced or terminal phases of incurable illness, through action and/or fantasy. As such, our study makes a significant contribution to the advancement of knowledge by demonstrating that this population’s sexuality can remain vibrant and can continue to express itself even if only within an inner mental space, through thoughts, fantasies, dreams, and memories. This finding challenges dominant models of sexuality that position sexuality in binary terms wherein active physical expressions suggest a presence of sexuality, and non-active physical expressions are presumed to evidence a complete absence of sexuality. Viewing internal expressions of sexuality as legitimate forms of activity, challenges this binary and creates a framework within which professionals and researchers can expand the purview of their questions and assumptions. Experiencing sexuality internally can be a source of psychological well-being and self-esteem for people with serious illnesses or at the end of life. The potential psychological benefits of inner sexual experiences and the notion that memories and fantasies around sexuality may support identity continuity for individuals with serious illnesses, or at the end of life, therefore warrants further investigation and clinical attention.

Our study findings should be viewed in light of several limitations. First our small sample size, which was related, in part, to the challenges we faced recruiting participants, potentially prevented our capacity to achieve data saturation. Second, while we initially intended to recruit participants solely through hospital and home-care palliative services, we were compelled to broaden our strategy to include older adults receiving services at palliative hospice day centers. This resulted in the reduced homogeneity of health statuses among participants, which may have influenced our results. Finally, while our small sample captures the views and experiences of men and women experiencing a variety of conditions and representing partnered and single adults, our sample was relatively homogenous in terms of racial/ethnic identity, sexual orientation and gender identity. This limits the transferability of our findings to important sub-populations.

Notwithstanding those limitations, the present paper constitutes an important contribution since, to our knowledge, it represents the first study to examine the relationship of older adults in palliative care to sexuality and sexual expression.

5. Conclusions

The present study suggests that sexuality, while potentially transformed, continues to occupy an important place in the lives of older adults at advanced and terminal stages of incurable illness. One of the study’s major contributions resides, in its identification of inner forms of sexual expression rarely documented in populations of older adults at the end of life. This finding may open up fruitful pathways for research and innovative directions for intervention. Overall, our results underline the importance of deconstructing ageist and ableist biases, which position frail older adults are asexual beings and render invisible the nuanced ways these older adults can and do retain sexuality and sexual expression. Ultimately our study calls for the recognition that sexual experience is complex and diverse and can prevail through the end of life for older adults.

Author Contributions

Isabelle Wallach: Conceptualization, funding acquisition, methodology, supervision, formal analysis, writing – original draft, review and editing. Julie Beauchamp: Writing – review & editing. Tamara Sussman: Writing – review & editing. Arianne Laplante: Investigation, formal analysis. Patrick Durivage: Resources. All authors have read and approved the published version of the manuscript.

Funding

This research was funded by the Social Sciences and Humanities Research Council of Canada (430-2019-00797).

Competing Interests

The authors have declared that no competing interests exist.