Merck Lectureship Sex talk and cancer: Who is asking? by Deborah L. McLeod and Joan Hamilton was part of the nursing role and responsibilities, but most did not routinely include it as part of their assessment, teaching or counsel- Abstract ling. Confirming this, Hautamaki and colleagues (2007) revealed that Estimates of sexual health problems after cancer treatment range 96% of oncology health care professionals reported that the discus- from 40% to 100% across cancers, with almost half of cancer survi- sion of sexuality-related issues with patients was part of their job. vors reporting problems with sexual functioning. While many side However only 2% of nurses reported this regularly taking place. In effects of cancer treatment gradually resolve within the first year or one literature review (Kotronoulas et al., 2009) examining nurses’ two, many sexual health issues do not. These problems can remain knowledge, attitudes and practices of sexual health care, the authors severe and constant and can even become worse over time causing concluded that nurses never, rarely or only occasionally offered to considerable distress. Although sexual health issues are common, they listen to patient sexual health problems. Flynn and colleagues (2012) are not addressed often enough in cancer settings. There are a vari- wrote “for nearly three decades, researchers have documented bar- ety of barriers to addressing sexual health concerns. In this lecture, we riers and opportunities for patient-provider communication about discuss those challenges and offer some possible approaches nurses sexual matters in oncology… yet, discussions about sexuality rarely could use to improve sexual health care, including the BATHE and the occur” (p. 595). Sexual health is gaining recognition as an essential PLISSIT models. Case examples highlighting the models are included. area requiring attention in practice (Kim et al., 2011) and according to many, oncology nurses should have the knowledge, skill and sen- With earlier diagnoses and improvements in treatment, survival sitivity to address the varied sexual health needs of cancer patients rates for a variety of cancers have increased. As a consequence, there (Julien et al., 2010; Kim et al., 2011; Kotronoulas et al., 2009). has been a growing emphasis in cancer care on long-term survivorship There is limited Canadian data to identify how well oncology and quality of life (Howell et al., 2011; Kotronoulas et al., 2009; Park systems address the sexual health needs of patients. However, the et al., 2009). Cancer and cancer treatment can cause a wide range of Ambulatory Oncology Patient Satisfaction Survey (NRCC) is reveal- short- and long-term sexual health and relationship problems (Flynn ing. Almost all provinces have had at least one survey completed et al., 2012). The National Cancer Institute (NCI, 2004) estimated that in the last 10 years. In 2009, patients who reported being satisfied sexual health problems after cancer treatment range from 40% to in response to the question, “Did I get enough information about 100% across different cancers. Baker and colleagues (2005) found that sexual changes”, on average, in Canada was 44.5%. From the data almost half of cancer survivors reported ongoing problems with sex- available, the highest score in provinces that participated from ual functioning. While many side effects of cancer treatment gradually 2009–2011 was 59.6% and the lowest score was 40% (J. Petrella, resolve within the first year or two, many sexual health issues do not, Manager of Quality, Cancer Care Nova Scotia, personal communica- and these problems can remain severe and constant and can even get tion, September 17, 2012). These data confirm what the literature worse over time (NCI 2004), causing considerable distress. reveals, that this is an area that deserves more attention. In Canada, the implementation of screening for distress programs using screening with the Canadian minimum data set (Canadian What sexual health care do patients want Partnership Against Cancer, 2012) has brought intimacy and sexuality concerns to the forefront. For patients, ticking the “intimacy/sexuality” from health care professionals? box legitimizes it as a problem and means that a conversation is likely A number of studies have identified that oncology patients want to be initiated. For some nurses and other health care professionals, health care professionals to take the lead in initiating conversations this ticked box can stir up some uneasy feelings. In this paper, we dis- about sexual health (Cox et al., 2006; Flynn et al., 2012; Julien et al., cuss the challenges of addressing sexual health concerns of cancer sur- 2010) and will not bring up the topic if the health professional does not vivors and offer some possibilities to improve sexual health care. (Flynn et al., 2012). Patients describe wanting open, honest, reflective communication about sexual health concerns (Cox et al., 2006; Hordern Addressing sexual health concerns & Street., 2007b), permission to openly discuss their issues, and to be Although sexual health issues are common, they are not addressed asked how changes with treatment have affected their sexual function often enough in cancer settings. In two studies (Magnan & Reynolds, and relationship (Park et al., 2009). Further, they want nurses to nor- 2006, 2005) of nurses from five different specialty areas, including malize the changes and the concerns they are experiencing, and to oncology, nurses identified that sexual assessment and counselling know that their issues are not unique (Hordern & Street, 2007b; Stead et al., 2003). In one study (Flynn et al., 2012), 78% of patients wanted to have the sexual health discussion and be informed about common About the authors sexual side effects before treatment began, including basic practical Deborah L. McLeod, RN, PhD, Clinician information about sexual functioning and the intimacy changes caused Scientist, QEII Cancer Care Program and by disease treatment (Horden & Street 2007a; Stead et al., 2003). Stead Dalhousie University, QEII Health Sciences et al. (2003) found that patients did not expect the nurse to have sex- Centre, Victoria Building 11-006, 1276 South ual health expertise, but wanted a supportive space with the nurse to Park St., Halifax, Nova Scotia B3H 2Y9. rehearse their experience, ideas, concerns and hopes. Phone: 902-473-2964; Fax: 902-473-2965; Email: [email protected] Barriers to addressing sexual health needs Given the strong evidence of need in this area and the relative Joan Hamilton, RN, MScN(A), Clinical Nurse Specialist - Cancer simplicity of what patients are asking from nurses, how is it that Care, QEII Cancer Care Program, QEII Health Sciences Centre, sexual health concerns are not being addressed more frequently? Victoria Building 8B-019, 1276 South Park St., Halifax, Nova We found a range of barriers to sexual health care identified in Scotia B3H 2Y9. Phone: 902-473-5407; Fax: 902-473-3359; Email: the literature. [email protected] doi:10.5737/1181912x233197201 CONJ • RCSIO Summer/Été 2013 197 Not part of nursing role: In a large study by Magnan and Reynolds to pressure and criticisms from co-workers, cited lack of support (2005), the major barrier for oncology nurses to discussing sexual from managers and other leaders and absence of role models as bar- health with their patients was that they did not believe that patients riers to addressing sexual health issues (Magnan & Reynolds, 2006). expected them to address sexual issues. Hautamaki and colleagues (2007) reported that 92% of nurses felt it was primarily the treating Attitudes, values and beliefs of nurse: In a variety of ways, the atti- physician’s responsibility to discuss sexual issues, although 78% of tudes, values and beliefs of nurses have an effect on how, or if sexual these nurses also reported that it was a responsibility they shared health concerns are addressed. Some nurses worry about offending with the physician and the patient. or upsetting patients (Hordern & Street, 2007a; Kim et al., 2011; Lavin & Hyde, 2005) and believe that patients would not be willing to have Lack of knowledge and skill: Nurses and other health care profes- sexual health discussions (Nakopoulou et al.; 2009). In contrast, one sionals often report feeling inadequately prepared and uncomfort- large study found that it was the nurses who did not feel comfortable able about initiating the conversation and lacked confidence because talking about sex (Magnan & Reynolds, 2006). Embarrassment has they did not feel properly prepared or trained (Flynn et al., 2012; been found to be a factor and can outweigh the patient’s need (Cox Hautamaki et al., 2007; Kotronoulas et al., 2009; Lavin & Hyde, 2005; et al., 2006; Kotronoulas et al., 2009, Magnan & Reynolds, 2006; Stead Stead et al., 2003). In the Hautamaki study, lack of education was the et al., 2003). Ironically, findings from studies examining patient views main barrier to addressing sexual health with patients, a view shared have indicated that patients avoid raising their concerns because they by others (Kotronoulas et al., 2009). Although many nurses felt this are worried about embarrassing health care professionals (Stead et was an important aspect of care, nurses worried about making mis- al., 2003). It would appear their worry is well founded. takes and did not want to show their vulnerability to patients, nor pro- Many health care professionals did not want to address sexual vide incorrect information (Cox et al., 2006; Haboubi & Lincoln, 2003; health issues because of patient age (too young or too old), gender, Hordern & Street, 2007b; Stead et al., 2003). Kotronoulas et al., (2009) culture, religion, or because they lacked an awareness of customs concluded that nurses’ inadequate knowledge was divided into three and beliefs and were worried that the conversation could be misin- categories: inability to provide explicit information on specific sexual terpreted (Hordern & Street, 2007b; Kotronoulas et al., 2009). Some concerns, inadequate communication skills, and lack of experience. health care professionals do not discuss sexual health because patients reminded them of their parents (Hordern & Street, 2007b), Environment and system issues: Heavy workloads and time con- while others report that talking about sexual health is an invasion of straints are also reported as factors preventing nurses from address- privacy (Kim et al., 2011; Magnan & Reynolds, 2005). Hautamaki et al. ing sexual health, though some speculate that failure to prioritize and (2007) concluded that the health professional’s own comfort level was address these concerns might reflect some avoidance because sexual a key predictor of whether sexual health issues would be addressed. health was not valued or because the nurses did not feel knowledge- able or skilled (Hautamaki et al., 2007; Kim et al., 2011; Kotronoulas What can nurses do differently? et al., 2009). Some nurses reported that the lack of written educa- It is clear from the foregoing that there is a need and a desire on tion materials for both the patient and themselves, and lack of sexual the part of patients for health care professionals to address sexual- health resources to refer patients to, prevented them from initiating ity. While it is true that several health care professionals might be in a conversations (Kotronoulas et al., 2009; Stead et al., 2003). Others position to do so, nurses are arguably in the best position given their avoid sexual health discussions because there was no privacy, or they access to most patients and skill in patient education. Two models did not see patients alone (Hordern & Street, 2007b; Kotronoulas et that we have found helpful in increasing confidence and skill with sex- al., 2009; Stead et al., 2003). Two studies (Hordern & Street, 2007b; ual health concerns are the BATHE model (Stuart & Lieberman, 2008) Magnan & Reynolds, 2006) described barriers relating to team mem- and the PLISSIT model (Annon, 1976) (see Table 1). There is evidence bers. For example, health care professionals sometimes worried that that 80% of oncology-related sexual concerns can be managed through team members may feel that this aspect of care was totally inappro- the first three levels of the PLISSIT model (Schover et al., 1987). priate to discuss because of the life-threatening nature of the situa- The BATHE model (Stuart & Lieberman, 2008) and its adaptation to tion (Hordern & Street, 2007b). Nurses also reported concerns related BATHE-RS have been used successfully as a framework to guide nurses in addressing distress screening results (McLeod, Morck, & Curran, in Table 1: PLISSIT & BATHE-RS press). Once a topic of concern has been identified, and it is clear it is P Permission B Background B: Can you tell me more something the patient wants to discuss (I see that you have checked off A Affect about this? “intimacy/sexuality” on the problem checklist; is that something you T Trouble A: How has this been would like to talk about today?), the nurse follows the BATHE frame- H Handling affecting you (your life, work. The process of the BATHE conversation implicitly addresses the E Empathy your mood, relationship)? permission (P) step of the PLISSIT model. For many patients, this is suf- T: What about this is most ficient. However, others will want some limited information (LI), the troubling? second step of the PLISSIT model. When neither of these two are suf- H: How have you been ficient, experienced oncology nurses can provide more specific sug- handling this? gestions (SS) for common sexual concerns. The approach to using the E: Don’t forget to express PLISSIT model is less one of directing and more one of coaching and empathy providing normalization, validation and information along the way, as needed. When couples have relationship challenges in addition to sex- LI Limited R Response General education ual concerns, referral to someone with more specialized skill in sexual Information health counselling and/or couples counselling may be needed; this is SS Specific Response More specific education the intensive therapy (IT) step of the PLISSIT. Each of these steps is dis- Suggestions cussed in more detail below and illustrated by the case examples. IT Intensive Response Referral to another health Permission: When distress screening is in place, patients are implic- Therapy care professional itly given permission to identify that they have a concern. However, S (Re)Screening Rescreen; assess outcomes because sexuality is difficult to discuss, this may not be enough. Given at future visits that sexual health is affected in some way by almost all cancers and

198 CONJ • RCSIO Summer/Été 2013 doi:10.5737/1181912x233197201 their treatments (see Table 2), it is not appropriate for the nurse to closest? What gives you a good feeling about your relationship with one choose who to ask based on age, gender or assumptions about who another? Is there room to do more of that these days?) might be appro- is, or is not concerned. We have often been surprised by which patient priate. Similarly, specific suggestions on how to improve satisfaction is most concerned about sexuality—and those surprises point to our with sexual touch, both as the giver and the receiver, can be accom- own biases! Simply saying, “Many patients affected by X cancer are plished by suggesting the sensate focus exercises (see e.g. Katz, 2007). concerned about the impact on how they feel about themselves, as a man or a women or their sexual function. Has this been a concern for Female dyspareunia: Women can experience pain with penetration you?” both normalizes the concern and gives someone permission to for different reasons post treatment. Physical/mechanical alterations talk about it, if they wish, whether or not sexuality is a concern. If it is to the vagina can be at fault. This can be caused by narrowing, short- not a concern at that particular point in the illness trajectory, it could ening or changes in the vagina (e.g., with pelvic surgery, graft ver- be later. In our experience of almost 70 collective years of practice in sus host disease (GVHD), pelvic radiation), lack of lubrication (e.g., this area, we have found it to be exceptionally rare for patients to be with treatment-induced menopause, side effect of medication such as offended by the question. Occasionally this does happen, but respond- aromatase inhibitors), tissue breakdown and skin changes (inflamma- ing that sexual health is an aspect of health like all others is usually tion, blistering) or skin conditions that may or may not be related to sufficient. If it is a concern to the patient, using the BATHE is help- a malignancy. A second cause of pain is infection, either yeast or bac- ful in shaping a useful conversation about the concern, one in which terial, and inflammation caused by acute effects of pelvic radiation to patients typically will experience support to discuss the concern. local tissue and mucositis from chemotherapy. A third area that can While health care professionals are much more likely to address contribute to dyspareunia is neurological changes. Nerve pain from sexual health when the cancer affects the sexual organs, Robinson nerve damage can occur months to years post pelvic radiation. Pain and Lounsberry (2010) make the point that many aspects of illness, with chronic GVHD of the vagina and abnormal pain sensation at the cancer and treatment can affect how one sees oneself and one’s sex- opening of the vagina (allodynia) can be an issue. ual appeal, including things like fatigue, nausea, incontinence, and It is important to normalize the fear of pain and discuss how fear feeling dependent, as well as changes to one’s body and appearance. of pain can cause a lack of interest, avoidance and tension with an inti- This suggests that all cancer patients should be given an oppor- mate partner. There may be simple interventions that can help women tunity to discuss sexual health concerns, and the decision about feel more comfortable, but before interventions are recommended, whether to or not should be theirs. women with perineal pain should have a pelvic exam to determine the likely cause of the pain. For a women with a known shortened vagina, Limited information: Once the patient has had an opportunity to putting a donut-like ring on a partner’s penis shortens the penis so it discuss their concerns, it is generally evident what kind of limited does not hit the top of the vagina. For vaginal dryness, a vaginal lubri- information they might need. There are some excellent resources cant may be recommended with sexual activity to ease penetration. available to guide the nurse and patients, in this area (see Box 1). If There are several types of lubricants: water-based—with and without the nurse understands the information in these resources, she or he glycerine, all natural, silicone-based, oil-based and each with their own has sufficient knowledge to offer limited information and can often pros and cons. For day-to-day discomfort, burning and irritation, a vag- shape the information, or reinforce it, before or after the patient has inal moisturizer could be suggested. Vaginal dilation is recommended read some information for him or herself. This helps with under- for women who have had pelvic radiation to prevent or manage vaginal standing and retention. Regardless of the situation, and whether or stenosis (Briere et al., 2012; Johnson, Miles & Cornes, 2010; Katz, 2007; not the nurse is completely confident about what might help, it is Murthy & Chamberlain, 2012; Shanis et al., 2012; Woods, 2012). very important that patients are advised that their sex lives are not over. In some cases sexual function may be dramatically altered, but Erectile dysfunction: Erectile dysfunction certainly occurs in the con- there are always possibilities for maintaining sexual intimacy. text of cancer-related fatigue and decreased desire. Also, it is very common after pelvic surgeries, including radical prostatectomy, and Specific suggestions: Most health care professionals who wish to pelvic radiation. There are a variety of treatments for erectile dys- offer specific suggestions will need to review recommendations for function, though couples are often disappointed with these. It is the particular cancer populations with whom they practise. However, important for nurses who work with men receiving these treatments there are some very common concerns that require simple, but spe- to have a working knowledge of these aids (e.g., phosphodiester- cific suggestions. In all cases, if patients have difficulty follow- ase-5 inhibitor medications, vacuum erection devices and intercav- ing through on suggestions, particularly after repeated coaching to ernosal injections), even if they are not responsible for teaching men address barriers, referring on to other professionals may be in order. Table 2: Factors that increase the risk for sexual difficulties (Krebs, 2006) Loss of desire: Sexual desire is the least understood aspect of sex- ual response and loss of desire is very common for both men and Women • Age > 30 women experiencing cancer. There are a variety of reasons, includ- • Gynecologic surgery: hysterectomy, oophorectomy, ing fatigue and other cancer- and treatment-related symptoms, as vaginectomy, vulvectomy well as changes in body image, all of which can affect sexual desire Men • Any age beyond puberty and interest. In addition, changes in hormone levels following ovar- • Testicular or prostate surgery ian failure with chemotherapy or surgical intervention, and andro- gen deprivation therapies affect desire, sometimes dramatically. Both • Chemotherapy: alkylating agents, antimetabolites Psychosocial factors have been implicated in the experience of • Radiation to the pelvis sexual desire perhaps even more than physical factors (Robinson & • Surgery: abdominal-perineal resection, pelvic exenteration Lounsberry, 2010; Walker & Robinson, 2010). For women particularly, • Medications: antidepressants, antiemetics, the role of the relationship quality has been found to be as important as antihistamines, antihypertensives, narcotics, hormonal changes (Dennerstein, Lehert & Burger, 2005) in desire, and sedatives, steroids, tranquilizers some men at least report full sexual responsiveness, including desire, • Psychological issues: alterations in body image and self- even in the presence of castrate levels of testosterone (Warkentin, esteem and reactions related to amputation, alopecia, Gray & Wassersug, 2006; Wassersug, 2009). Thus, specific sugges- head and neck surgery, mastectomy, weight loss or gain tion about strengthening the relational bond (e.g., when have you felt • Treatment side effects: fatigue, mucositis, pain doi:10.5737/1181912x233197201 CONJ • RCSIO Summer/Été 2013 199 Box 1: Resources your relationship like before cancer?), the nurse determines that they previously enjoyed a very active sex life and this is a major change for Pamphlets for Patients and Partners them. When the nurse asks who initiated sex in the past and if either has Canadian Cancer Society. (2012). Sexuality and cancer: A guide attempted to initiate sex lately she discovers the following: in the past, for people with cancer. Toronto, Canada: Canadian Cancer their sexual interest was fairly matched and that both initiated and most Society. www.cancer.ca often the other responded. However, June says she is afraid to initiate now because she is afraid that Tim is no longer attracted to her. This Schover, L. (2013). Sexuality and cancer: For the woman with belief is further reinforced by the fact that Tim has not initiated sex. For cancer and her partner. New York, NY: American Cancer Society. his part, Tim is astonished to hear his wife’s thoughts. He was attempting www.cancer.org to be respectful of her need for healing and was waiting for her to initi- ate. After some tears and laughter both said that understanding what Schover, L. (2011). Sexuality and cancer: For the man with the other was thinking was enough for them to make some changes and cancer and his partner. New York, NY: American Cancer Society. they expressed confidence that they would not need any further help. www.cancer.org Case example 2: Limited Information Support Ted Smith attended a routine clinic visit alone following a related Cancer Chat Canada www.cancerchatcanada.ca allogeneic stem cell transplant for AML six months ago. He is strug- Canadian Cancer Society www.cancerconnection.ca gling with considerable fatigue. The nurse asks about sexual health changes and if he has any questions or concerns. He pauses and then Courses for Health Professionals tells the nurse that he has absolutely no interest in sex. On further “Sexual Health in Cancer” and “Sexual Counseling and Cancer” exploration, he says that he and his wife, Charlene, had a good sex offered by the Canadian Association of Psychosocial Oncology, life before his diagnosis, and while he was waiting for transplant they Interprofessional Psychosocial Oncology Distance Education were having some sexual activity with intercourse. Lately, Charlene (IPODE) Project www.ipode.ca has been asking when they are going to begin having sexual activity again. They tried a couple of times, but he wasn’t able to maintain an to use an aid. There is emerging evidence that use of such aids soon erection. He felt pressured and exhausted. after prostatectomy and cryoablation can improve erectile recovery Ted does have spontaneous erections a couple of mornings each (Ellis, Manny, & Rewcastle, 2007; Kohler et al., 2007; Raina, Pahlajani, week. He reports wanting to please Charlene, but that sex “just wasn’t Agarwal, & Zippe, 2007; Zippe & Phalajani, 2007) and preserve penile on my radar screen”. Ted is beginning to feel a bit anxious, “but only length after prostatectomy (Kohler et al., 2007). Specific suggestions because Charlene is bringing it up”. It is her questioning that is trou- about trying these aids are appropriate, but may require referral to bling him the most. He wonders if his lack of sexual interest is due to other services. Many couples need help learning to incorporate these treatment and recovery, and believes that when he is feeling better, aids into their sexual repertoire, as the difficulty of this, even after he will become interested again. He is handling this situation now by men have learned the mechanics, is a factor that has been shown to trying to distract Charlene, so they don’t have to talk about it. limit their use (Neese, Schover, Klein, Zippe, & Kupelian, 2003). The nurse offered the following information. First, she reassured Ted that many people who are recovering from cancer treatment Intensive Therapy: Some couples will not find the psycho-educa- experience a decline in their sexual interest and their ability to per- tional approach of the first three levels of the PLISSIT model enough form sexually, and that fatigue and medications can affect sexual to solve the challenges they are experiencing. This is most common interest, too. Sexual interest commonly returns with time and usually when the issues are very complex or the couple is struggling with after the fatigue abates. Ted found it helpful to learn that he was not effective communication or conflict. Typically this will be outside “abnormal”, that many men experienced a lack of sexual response of the scope of most nurses, save advanced practice with training and that this improves gradually through recovery. He had his in couple/marital therapy, and couples should be referred to which- hunch that this would gradually get better validated. He was relieved ever health care professional has training in this area. to know that six months is still relatively early in recovery, given the treatment. He left the clinic planning on talking to Charlene. Thoughts about obligations in practice Nurses are typically responsive to the needs that patients pres- Case example 3: Specific Suggestions ent and endeavour to do their best to assist. In the case of sexual Ted and Charlene return to clinic together a few months later. health concerns, however, patients are often silent and do not ask for Ted reports that the fatigue has continued and that they are still not help. Unfortunately, all too often nurses collude in that silence. Given having sexual activity of any kind. The nurse, asking who is most that the needs are real, well supported by the evidence, nurses have concerned about that, discovers that Charlene is feeling disconnected an obligation to break the silence and directly address sexual health. from her husband and is quite upset. Ted is only upset because The vast majority of sexual concerns will be addressed by the first Charlene is and states that he doesn’t feel like initiating sex when he three levels of the PLISSIT, while the BATHE model provides a frame- cannot be sure he can “follow through”. work to discuss concerns, even when nurses have limited knowledge The nurse asks what it is about sex that is important to Charlene themselves. Patients have a right to expect more from us. and discovers that it is the touch and closeness she misses, not so much the performance of intercourse. Ted acknowledges he misses Case examples that, too. The nurse offers the idea that people can manage well Case example 1: Giving Permission without sexual intercourse, but need touch for well-being. She also June Harper is a 56-year-old woman who had a lumpectomy for introduces the metaphor of sex as a meal—when one is not hungry, breast cancer. She is seen for follow-up along with her husband, Tim, a four-course meal can seem daunting, but an appetizer might be who is 60 years old. It has been three months since the surgery and it manageable. While their usual sexual practice might be too much is determined that chemotherapy is not needed. When the nurse asks if right now, a small amount of touch might be manageable. After get- they have experienced changes in their sex life as a result of her cancer ting agreement from both that this might be possible and their will- and treatment there is a pause and she responds that they are not hav- ingness to try something new, she suggests the sensate focus level 1 ing sex. With some further inquiry (Is this a concern for you? What was as a beginning exercise.

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