Hilde de Vocht1
(1)
Elderly Care and Palliative Care, Saxion University of Applied Sciences, Deventer/Enschede, The Netherlands
†After submitting the manuscript for this chapter, Hilde de Vocht contracted cancer herself. She died in 2016.
34.1 Functional Decline at the End of the Cancer Trajectory
Although cancer survival numbers are rising, many cancer patients will sooner or later have to face an inevitable death. For incurable cancers, the trajectory toward death typically is one of steady progression followed by a short period of evident functional decline, with most reduction in performance status, weight loss, and impaired ability for self-care occurring in the last few months of life [1]. This chapter addresses aspects of sexuality and intimacy at this end-of-life phase.
34.2 Sexual Activity
Functional decline in the last months of life does not always imply that sexual activity comes to a stop. Couples or individuals sometimes remain sexually active until the very last days of life [2, 3]. Some couples even seem to increase and intensify their sexual contact [2]. Although couples having sex until just before death may be the exception to the rule, it is important to realize that every couple you meet in clinical practice (including elderly couples; see Chap. 32) may be one of those couples and may therefore be in need of professional advice and support regarding their sexual activity. Plenty of relevant information, tips, and advice have been given in the previous chapters of this book. One important difference with treatment options in the end-of-life stage compared to the curative stage is that some interventions can be considered without worrying about cancer-enhancing capacity or dependency on painkillers or sleep medication [2]. For example, in case of a dry and atrophic vagina, local or general estrogens can be prescribed, just like testosterone replacement can be helpful in case of low desire due to low androgen levels, and couples might benefit from liberal amounts of painkillers when their sexual activity is interfered by pain [2].
Most cancer patients will at some point cease to be sexually active. Progressive cancer and its treatment can affect physical aspects of sexuality, making sexual activity no longer desirable or possible. However, it is not always (just) the physical aspects that result in cessation of sexual activity at the end of life. There is always also an impact on the sexual identity of the patient and on the relationship [3]. Patients may no longer feel sexually attractive, for example, due to physical changes and disfigurement, and partners may struggle with the situation they find themselves in, as the example of Bruno illustrates:
Bruno : Though I usually enjoyed sexual contact, her illness stopped me. For me that mainly has to do with how I perceive sex: it’s an act you perform together and that was no longer possible. I mean the players had changed, including me: if my partner can no longer respond to me, then in turn I can no longer respond appropriately, so that play was over. It wasn’t just the way she looked, I mean she was bald and gaunt and felt very bony, and that didn’t arouse me, despite everything I feel for her, but it wasn’t just her looks, it’s also ideas, fantasies about what happens in the act. So I no longer felt the urge. ([3], p. 79).
34.3 Sexuality is a Broad Concept
If for whatever reason sexual activity has stopped, it becomes all the more important to consider all elements that make up sexuality:
Sexuality is a central aspect of being human throughout life 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. While sexuality can include all of these dimensions, not all of them are always experienced or expressed. [4]
From this definition, it can be concluded that, even after sexual activity has stopped, cancer patients still are sexual beings in the broad sense of the word and will continue to be so until they die. Key elements of sexuality that contribute to this central aspect of being human throughout life are gender identity and the need for intimacy.
34.4 Gender Identity/Body Image
It is important to feel confident about oneself including one’s appearance. We are all sexual beings in the sense that we are all born male or female. People go at great length to present themselves in a way that matches their gender identity and with how they want to present themselves to the world. And while for most patients outward appearance probably will become less important, it is an illusion to think that it is no longer a matter of any importance. With greasy hair, unkempt nails, and wearing pyjamas that are long overdue, it is not easy to maintain a high level of confidence as the sexual being that every person is. The importance of ensuring good oral care until the very end cannot be stressed enough. Everyone who has seen (and smelled) the result of failing to do so will understand what is meant here. Moreover, because nobody lives in isolation, the effect of appropriate grooming is not just on the persons themselves, but also on those surrounding them. It is more appealing to be close to a person who is as content as can be in the given circumstances about his or her appearance than to someone who has every right not to be so pleased. As always, care and support offered has to be tailored to the wishes of the persons involved, with some willing to spend their last bit of energy to have their hair and makeup done and others more than happy to invest as little as possible in personal grooming. This goes beyond the point of death, as many people have explicit wishes regarding which clothes they want to wear after they passed away, how they would like to be presented, and who (if anybody) will be allowed to see them after they have died.
34.5 Need for Intimacy/Affectionate Touch: Couples
Intimacy can encompass many aspects, including psychological aspects, depending on which definition of intimacy is used. In this chapter, intimacy refers to physical intimacy without sexual activity, and this concept can be grasped by “affectionate touch.” Affectionate touching can be a part of the relationship, not only between (sexual) partners but also between people who are not in a partnered relationship, for example, between parents and their children, between friends, and between health care professionals and patients.
Affectionate touch is a lifelong basic need. If cancer patients are in a partnered relationship where sexual activity has stopped, it is therefore important they still have a way of sharing physical intimacy. These couples may place extra value on forms of intimacy that were already part of their repertoire (embracing, cuddling, kissing, spooning, etc.). Alternatively, they face the challenge of finding new forms of sexual contact or intimacy. An important thing to keep in mind when exploring these new avenues is that “different” is not always worse. Sometimes it can even be a change for the better: “couples facing erectile dysfunction can transform their love life into a deeply satisfying emotional and sexual relationship by changing the way they make love” ([5], p. xi). However, we should appreciate that even for those couples it will take time to adjust and that there has to be space to grieve for the loss of their previous love life and to express feelings of remorse and anger.
34.6 Stay Connected
When patients come to a stage where they can no longer “do” a lot of activities, they can still “be” the person they are and have meaningful exchanges with other people [6]. Affectionate touching can be a way of demonstrating that the ill person still is the beloved partner, and withdrawing affectionate touching can be experienced as no longer being lovable:
You know my wife used to kiss me on the lips, then she kissed me on the forehead, then she patted my shoulder, and this morning when she left, she wiggled my toes. ([6], p. 6)
Although this partner was probably unaware of her behavior, she was withdrawing from her husband. When others withdraw in the face of serious illness, the patient may experience a social death prior to physical death [6].
A milestone for patients at the end of life and their partners is the introduction of a hospital bed. This will make caring for the patient easier, but at the same time will impede closeness and physical touch. Not all professionals realize that at this point there comes an end to sharing physical intimacy by sleeping together for sometimes as long as 60 or 70 years. Once professionals do realize this, they prove to be very much capable of thinking along in order to find creative solutions to make sure that partners can still share physical closeness. Couples who did find ways to “stay in touch,” despite cancer and cancer treatment, experienced this as a source of consolation. For many couples affectionate touching gave a sense of deep connectedness, cushioning the fear and pain, and making the journey less of a lonely one [6].
34.7 Need for Intimacy/Affectionate Touch: Professionals
There are cancer patients who lost all physical connection with their partner or do not have a partner (anymore). Some of them lost their partner a long time ago, and they may not have felt any affectionate touch for a long time and might therefore be craving for it, as it is a lifelong basic need. Professionals can contribute to the need for physical intimacy by touching patients in a way that literally makes them feel they matter. Even when touching is “functional” as in examining a patient, it makes all the difference whether someone feels touched like an “object” or a “subject.” Professionals can also touch their patients for the sole reason of giving comfort. Research has demonstrated that professionals touching patients in a “comforting way” (e.g., by offering therapeutic massage) often results in relaxation, a sense of well-being, improved sleep, and less pain [3].
34.8 Communication Model: BLISSS
Sexuality and intimacy require attention from health care professionals, and patients at the end of life and their partners should not be excluded from this. A simple communication model, based on the preferences expressed by cancer patients and their partners, can be helpful in structuring the exchange about these topics: the BLISSS model (Box 34.1) [7].
Box 34.1: BLISSS Communication Model
· B: Bring up the topic in a sensitive way
· LI: Listen actively to the Individual experience
· S: Support emotionally
· S: Stimulate communication between partners
· S: Supply personalized advice and information; where necessary, refer to a specialized professional
B: Bring Up the Topic in a Sensitive Way
Most patients and partners will not disclose their sexual issues spontaneously [3]. Professionals need to find ways to sensitively raise these topics, leaving open the possibility for the patient not to respond, or to decline while reserving the option to come back to it later.
Examples of useful opening phrases are:
· “People sometimes have concerns about how their intimate relationship has been affected. Is this something you might find helpful talking about?”
· “Some people having this treatment comment that it has reduced their sexual feelings or ability to make love. Is that something that is of concern to you?”
However, for any interaction regarding these private topics to be acceptable to the client, it is of paramount importance for the professional to adopt a person-to-person approach. Patients and partners are unanimous about the necessity of health care professionals “seeing them as a person” in order to discuss intimate issues. Sexuality and intimacy for many people are the most personal aspects of their life, and they feel these topics cannot be discussed if they feel treated like “cancer patient number 213.”
LI: Listen Actively to the Individual Experience and S: Support Emotionally
If clients do wish to respond to the initiative to discuss their sexuality and intimacy, the professional should use active listening skills, not just following professional protocols that may prevent the client from sharing what the main problem actually is. The professional has to recognize the experience and expertise within the patient or couple. Instead of the lead role professionals have when planning treatment, they need to adopt a supporting role, with an open attitude and a willingness to explore experiences from the clients’ perspective.
What clients need first of all is somebody willing to listen to their story, to “normalize” their queries, and to support them emotionally, helping them to accept that it is not abnormal or wrong to be concerned about sexual relations at the end of life.
S: Stimulate Communication Between Partners
If the conversation takes place with both partners present, the professional has the opportunity to help bridging the gap that might well exist between partners. This is crucial in view of the aim to keep communication between partners open, so they can discuss intimate issues, and hopefully find (new) ways to experience physical intimacy and, if desired, sexuality. Without the partner being present, it is still possible to help initiate communication between partners. “Have you discussed these issues with your partner?” or “How does your feel about this?” can be good probes to explore or catalyze communication between partners. In some cases, crossing barriers that have developed, often through fear of upsetting the other person, may mean talking to partners separately at first.
Stimulating communication can also include tactfully encouraging partners to touch their loved ones by holding their hands or to extend physical intimacy by lying on the bed with them. Alternatively, professionals could encourage partners who are open to this to touch their beloved as part of caring by wiping their faces or applying body lotion.
S: Supply Personalized Advice and Information; Where Necessary, Refer to a Specialized Professional
During this conversation, professionals should recognize and overcome their need to “fix” things. However, at some point, after the professional has a clear picture of what might be helpful in the given situation, tailor-made advice and tips can of course be provided.
34.9 What Does It Take from Health Care Professionals to Discuss Intimate Issues?
If professionals encounter problems in applying the very simple BLISSS model, this is often related to obstacles in themselves. As has been mentioned earlier, the context of a person-oriented approach is a prerequisite for discussing sexuality and intimacy. Professionals should not focus exclusively on the illness, but on the whole of the patient. For many health professionals, this is not an easy step. Professionals describe barriers that might stop them from providing patients and partners with the opportunity to explore sexuality and intimacy issues, for example, their own upbringing and socialization processes or having negative sexual experiences themselves. Moreover, for all of us, there appear to be hindrances at an even deeper (existential) level. Relating to patients requires approaching their patients in a compassionate way, as fellow human beings, travelling in the “same boat,” recognizing that “the existential nature of human reality makes brothers and sisters of us all” [3].
This does require professionals to show they are human too, without hiding behind the façade of the medical profession, instead of undeservedly emotionally shutting out cancer patients as reminders of their own finitude. As Kuhl ([8], p. 148) argued, this means that health care professionals must deal with their own emotions:
But if I want to be a compassionate physician and not cause harm, then I must address my feelings. Any emotion that I have not recognized or expressed is likely to be projected onto my patient, potentially adding to his suffering. The patient will experience my avoidance, fear, guilt, sense of failure, and other denied emotions as a deliberate failure to engage them as a human being, a deliberate decision to disregard the meaning and importance of their life. They will feel that I abandoned them at the very moment they needed me most. [9]
Patients and partners highly valued encounters with professionals who were offering a person-to-person approach, and described the soothing effect of an empathic professional in times of great vulnerability ([9], p. 56).
34.10 Stepped Skills
With competing priorities, time constraints, and lack of experience, peer support and education, combined with personal and existential barriers, it is not realistic to expect that telling professionals they should discuss intimate topics will make all of them do so. Therefore, a good alternative would be to refer to a professional (e.g., a (specialist) nurse) who has the time and skills to support patient and partner in this domain [3].
34.11 Final Goodbye: Having to Let Go and Beyond
When people are actually dying, it can sometimes be necessary to literally let go to let die:
Maureen: We were holding his hands. Then the nurse came in and she said “maybe you’d better let go of his hands, because it will be easier for him to go”… and of course I knew all this, but you can’t, can you? Well, we let go of him, we put his hands by his body and then very soon he passed away [10].
It is important to realize that for partners the consolation of having shared a physically intimate relationship until the end extends beyond the death of their loved ones and can help them through grieving. It can help to pave the way to carry on living and find the emotional space to love again ([3], p. 81). Helping couples who are facing incurable cancer to find ways to stay connected will be of value to both of them until the end of their lives, and therefore deserves our professional support and guidance.
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