Sexual healthcare for cancer patients receiving palliative care: a narrative review.

Palliative care aims to improve quality of life (QoL) for patients and families and does so by addressing issues not limited to pathology, but other symptoms that may be debilitating to patient experience and QoL. Despite sexual health being an important aspect of life for many patients, it is often omitted in clinical practice. This review summarizes published primary studies to explore the prevalence and importance of incorporating sexual health in the symptom screening and assessments of palliative patients, to identify current interventions that are implemented to address sexual health issues, and identify the barriers that health care professionals (HCPs) and patients may encounter which may prevent sexual health discussions. A literature review was conducted on Medline and Embase databases using keywords including "cancer", "sexual health", "intimacy", and "palliative care". Eleven papers focusing on the sexual health and intimacy of terminally ill patients in hospice, palliative or terminal care settings were identified for inclusion. Discussions about sexual health, functioning, and intimacy were not common in patient care, despite being a service that both patients and their partners desired. Referrals to sexologists, or discussions with patients and partners about intimacy and sexuality over the course of the disease trajectory were shown to improve QoL as well as alleviate some of the stress of receiving palliative care services. HCPs cited a lack of training, their own life experiences, or discomfort with the topic as barriers to initiating conversations with patients. In conclusion, sexuality and intimacy remain important parts of many people's lives regardless of their health, and should be incorporated into the care of all patients including those in palliative care. There is a need for further research to evaluate different methods or procedures for educating and counselling patients and their partners on sexual health issues. HCPs should have specific training and education in sexual health care to enable them to initiate and direct these discussions.

Related papers:

title: Experiences of sexuality and intimacy in terminal illness: A phenomenological study
abstract: There is a paucity of research considering sexuality and intimacy in palliative care. It is therefore unclear whether palliative care professionals have a role in addressing these issues with patients and their partners.  To understand people’s experiences of sexuality and intimacy when living with a terminal illness.  A Heideggerian hermeneutic (interpretive) phenomenological study was undertaken. Data were collected using one-to-one conversational interviews. An iterative approach to analysing the narratives was used to reveal shared meanings.  A total of 27 patients and 14 partners of patients with either cancer or motor neuron disease were recruited from outpatient, community and hospice inpatient units. All participants were aware that the illness was life-limiting.  When someone is living with a life-limiting illness, their coupled relationship is also dying. In their being-towards-death-of-the-couple, patients and partners of patients with motor neuron disease and terminal cancer experienced connecting and disconnecting within their coupled relationship. Becoming-apart-as-a-couple was experienced as loss of spontaneity, as lack of reciprocity and as rejection. This was influenced by a range of factors including medical treatments, disfigurement and the disabling effects of equipment. Some participants experienced re-connecting through becoming-closer-as-a-couple, although this was not always sustained.  This study sheds new light on people’s experiences of sexuality and intimacy when living with a terminal illness. The ethos of holistic care requires palliative care professionals to provide opportunities for patients and their partners to discuss any concerns they might have about their coupled relationship and to understand the meanings symptoms have for them.

title: Is There a Place for Sexuality in the Holistic Care of Patients in the Palliative Care Phase of Life?
abstract: Being diagnosed with a life-limiting condition is a traumatic event. The journey to the moment of death is usually only done once—so it is a time of fears and uncertainty. Sexuality is particularly vulnerable at this time. It may be difficult for both patient and partner to deal with the changes in sexuality without professional assistance. It is “sexuality” rather than “sex” that defines the meaningful relationships people have with themselves and significant others. When sexuality is lost or changed, important benefits may be lost. Studies show that many patients do value sexuality and want assistance in making the best of their sexual potential during the palliative care phase. Health professionals regularly acknowledge the importance of sexuality for their patients but have difficulties acting on their beliefs. Sexuality, within the patient's functional ability and desire for it, must be acknowledged and included in holistic management. It is the health professional's responsibility to raise this issue.

title: Changes in Sexuality and Intimacy After the Diagnosis and Treatment of Cancer: The Experience of Partners in a Sexual Relationship With a Person With Cancer
abstract: Changes in sexuality and intimacy after cancer were examined using open-ended questionnaire responses with 156 informal carers who were partners of a person with cancer. Interviews were conducted with 20 participants to examine changes in depth. Seventy-six percent of partners of a person with "nonreproductive" cancer types and 84% of partners caring for a person with cancer involving "reproductive" sites reported an impact on their sexual relationship. Cessation or decreased frequency of sex and intimacy was reported by 59% of the women and 79% of the men. Renegotiation of sexuality and intimacy after cancer was reported by only 19% of the women and 14% of the men. Reasons for changes to sexuality after cancer were the impact of cancer treatments, exhaustion due to caring, and repositioning of the person with cancer as a patient, not a sexual partner. Changes to sexuality were associated with reports of self-blame, rejection, sadness, anger, and lack of sexual fulfillment. Positive consequences of changes included accepting the changed sexual relationship and having increased closeness and intimacy. These findings reinforce the need to acknowledge the sexual needs of partners as well as people with cancer, by healthcare professionals working in cancer and palliative care.

title: Sexual issues in early and late stage cancer: a review
abstract: IntroductionSexuality is an important aspect of life involving physical, psychological, interpersonal, and behavioral aspects. The aim of this review was to examine the literature regarding sexuality in advanced cancer patients, after taking into consideration the principal changes produced by the disease and its treatment.MethodsThis review considered references through a search of PubMed by use of the search terms “advanced cancer,” “palliative care,” in combination with “sexuality” and/or “intimacy.”ResultsSurgery, chemotherapy, hormonal therapy, radiotherapy, and drugs commonly given for the symptomatic treatment have relevant consequences on sexuality, also in the advanced stage of disease. Sexual dysfunction is a multifaceted issue and different causes may concomitantly have a role, including the psychological and clinical status. The existing clinical studies have shown important cultural barriers on sexuality. Sexuality is not considered a medical concern compared with the priority of treating cancer or symptoms. Although this issue is very private, unaddressed sexuality changes can be among the most negative influences on the social well being of a cancer patient. It is increasingly acknowledged that issues surrounding sexuality are an important factor in quality of life for patients with cancer and that sexuality is a legitimate area of concern in oncology and palliative care. Few studies have assessed sexuality in the advanced stage of disease. Nevertheless, advanced cancer patients are willing to talk about their sex lives and the impact of the disease on their sexual function.ConclusionsTo provide this component of care, professionals need to have good communication skills, an open and non-judgmental approach, and knowledge of the potential ramifications of disease and treatment of sexuality problems.

title: Stepped Skills: A team approach towards communication about sexuality and intimacy in cancer and palliative care.
abstract: Cancer often has a profound and enduring impact on sexuality, affecting both patients and their partners. Most healthcare professionals in cancer and palliative care are struggling to address intimate issues with the patients in their care.



 An Australian study using semi-structured interviews and documentary data analysis.  Building on this Australian study, using a hermeneutic phenomenological approach, data were collected in the Netherlands through interviewing 15 cancer patients, 13 partners and 20 healthcare professionals working in cancer and palliative care. The hermeneutic analysis was supported by ATLAS.ti and enhanced by peer debriefing and expert consultation.



For patients and partners a person-oriented approach is a prerequisite for discussing the whole of their experience regarding the impact of cancer treatment on their sexuality and intimacy. Not all healthcare professionals are willing or capable of adopting such a person-oriented approach.



A complementary team approach, with clearly defined roles for different team members and clear referral pathways, is required to enhance communication about sexuality and intimacy in cancer and palliative care. This approach, that includes the acknowledgement of the importance of patients' and partners' sexuality and intimacy by all team members, is captured in the Stepped Skills model that was developed as an outcome of the Dutch study.

title: Sexuality of individuals in the end-of-life stage
abstract: This paper looks at the dying process and the reasons to include discourse on human sexuality as part of the dying process when providing psycho-educational support to patients and families. Illness and learning of one's approaching death can disrupt the sex lives of terminally ill people who wish to continue benefiting from sexuality. This study uses the five stages of death theory, popularized by Elisabeth Kubler-Ross, and explores these stages from a unique sexological perspective. A qualitative methodological approach was used in order to better understand the difficulties met by terminally ill people when dealing with their sex lives during the various end-of-life stages. Data is presented as case histories gathered in the context of sexology consultations. Clinical interviews contributed to the resolution of sexual problems faced by terminally ill people and their family caregivers. This study raises questions about the professional's responsibility regarding the issue of sexuality for individuals in the end-of-life stage, as well as how to open discussions on sexuality.

title: Using the BETTER Model to assess sexuality.
abstract: A component of the American Nurses Association (ANA) and the Oncology Nursing Society (ONS) standards of nursing practice is systematic assessment and collection of data about the health status of each patient; this process includes sexuality (ONS & ANA, 1996). Many tools are available to nurses when obtaining a sexual history, assessing sexual function, and providing interventions that will assist patients in the management of any identified problems. Models such as PLISSIT, PLEASURE, and ALARM can support nurses by providing a guide for appropriate steps to address sexuality with patients (Andersen, 1990; Krebs, 2001; Mick, Hughes, & Cohen, 2003; Shell, 2001). The BETTER model also can be used to provide information to help oncology nurses conduct sexuality assessments more effectively (Mick et al.) . Test your knowledge of sexuality assessment by answering the following questions, which are based on the BETTER model. 1. Sexuality is best described by which of the following definitions? a. Sexual function b. A composite of feelings and behaviors specific to gender c. Sexual activity and the love and caring that accompany it d. Body image, gender roles, patterns of affection, family and social roles, and genital sex 2. Mrs. A, a 63-year-old woman with stage II breast cancer, comes to the clinic for her chemotherapy follow-up visit. While the nurse performs her assessment, Mrs. A states that she has been feeling very tired most of the time. The nurse can use this comment to bring up the topic of sexuality and accurately provide information by saying, a. “Tiredness can change your sexual life, too. Many women notice changes in their sexual lives. If you have any conJoAnn Mick, RN, MSN, MBA, AOCN®, is a patient care nurse manager at the University of Texas M.D. Anderson Cancer Center in Houston and a doctoral student at Texas Woman’s University in Houston; Mary Hughes, MS, RN, CNS, is a clinical nurse specialist in the Psychiatry Section of the Neuro-oncology Department at the University of Texas M.D. Anderson Cancer Center; and Marlene Z. Cohen, RN, PhD, FAAN, is a John S. Dunn, Sr., distinguished professor in oncology nursing in the School of Nursing at the University of Texas Health Science Center at Houston and the director of applied nursing research at the University of Texas M.D. Anderson Cancer Center.

title: Communication About Sexuality in Advanced Illness Aligns With a Palliative Care Approach to Patient-Centered Care
abstract: Treatment-related sexual complications are common in cancer patients although rarely discussed in the palliative care setting. Sexuality is an important survivorship issue and remains relevant even in the terminal setting. There are multiple barriers in dialoguing about intimacy and sexual functioning from the patient and provider perspectives. Palliative care providers, while not expected to be sexual health experts, can provide comprehensive patient-centered care by including sexual health as part of their evaluation. They can explore how sexual dysfunction can impair functioning and utilize an interdisciplinary approach to manage symptoms. Palliative care providers can help patients identify their goals of care and explore what anticipated sexual changes and treat-related side effects are tolerable and intolerable to the patient’s quality of life. Principles on addressing sexuality in the palliative setting and practical ways of incorporating sexual history into the palliative care assessment are provided.

title: Sexuality at the end of life
abstract: There is very little research literature that addresses sexuality at the end of life. Although end-of-life care has become a priority for nursing education, the issue of end-of-life sexuality is not included in the curriculum. Nurses are frequently in a position to establish relationships with couples that encourage a frank discussion and information sharing. As patient advocates, nurses can address end-of-life sexuality issues by taking a sexual history and implementing a general intervention model, such as the PLISSIT. Couples need to be reassured that if they have enjoyed a close sexual relationship, sexual intimacy may continue to be part of their relationship, even at the end of life.

title: Couples in palliative care
abstract: The diagnosis of a life-threatening illness such as cancer brings huge losses, both actual and potential, not only for the individual but also for the partner and family. When one person is seriously ill, the dynamics within a couple are altered. Adjustment is required as they negotiate the range of challenges that progressive illness brings. How people express themselves in close relationships is socially and culturally determined. However, it is generally accepted that human beings need to communicate and receive love and that this is done in a variety of ways. As they approach death, people's need for physical closeness, to touch and be touched, may be much more significant in terms of quality of life. Body image and bodily functions may be drastically altered for the patient with advanced disease. It is essential to regard sexuality and intimacy as fundamental, integral aspects of palliative care.

title: Adolescent Sexuality at the End of Life: Practical Approaches to a Difficult Problem (TH308)
abstract: Identify and describe the three steps in medication management at the end of life (medication reconciliation, medication regimen review, and medication provision). 2. Explain the Medicare expectation for the provision of palliative medications for patients receiving care through their hospice benefit. 3. Given an actual or simulated patient with a terminal diagnosis, apply the Medicare regulation to determine if hospice should provide the medication. To be successful, the participant will be able to apply criteria to determine if the medication is used to treat the primary or a related condition, and how to address ineffective or cost inefficient medication use. Medications are frequently used to treat pain and other symptoms associated with advanced illnesses. It is critically important that hospice and palliative care practitioners excel in all three steps in this medication management process. This includes scrupulous attention to medication reconciliation and a comprehensive medication regimen review with particular attention to the changing goals of care. Medicare regulations require that hospice programs confer with an individual with education and training in drug management to prevent, detect, and resolve drug-related problems. Examples include overor underdosage, adverse effects, inappropriate drug selection, untreated indications, drug use without indication, and nonadherence. Once the medication regimen is honed to specifically target the patient’s therapeutic goals at this critically important time in their life, a decision must be made regarding which medications the hospice program should provide. Medicare guidelines state that drugs related to the palliation and management of the terminal illness and related conditions be provided by the hospice. However, this requirement is often interpreted with great disparity, both in terms of which medications are related to the terminal illness and in particular what constitutes a related condition, and, consequently, the medications that should be used to palliate symptoms for related conditions. Further complicating the situation are those patients who are admitted on medications that may be related to the terminal diagnosis or a related condition, but for which there is no evidence to substantiate their use at that point. Another example is the use of prohibitively expensive medications when cost-effective medications are available. This session is designed to review these requirements from Medicare and to use a case-based approach for decision making in the medication management process. This is a critically important discussion for every hospice and palliative care practitioner, aimed at ensuring equity for all parties (the patient, the hospice and Medicare) and successful therapeutic outcomes for our patients.

title: Bringing Sexy Back: Sexuality and Intimacy Concerns in an Advanced Heart Failure Population Receiving Palliative Care Consultation
abstract: s S19 of gastric bypass is deemed too high, such as individuals with HF and left ventricular assist devices (LVAD). Our program collaborated with our weight loss clinic to offer LSG to patients meeting clinical indications. We report our experience in patients with HF and LVAD who underwent LSG.  12 morbidly obese patients, 9 with HF and 3 with LVAD, underwent LSG since 9/2013. A retrospective review of the medical record was conducted to evaluate the effects of LSG on weight, BMI, NYHA class, ejection fraction (EF), VO2 max, and diuretic dosing. Data are presented as mean ± standard deviation.  There were NO deaths or complications requiring reoperation. Weight loss was 33.9 ± 14.5 kg at 6 months and 37.9 ± 13.5 kg at 1 year. BMI fell from 45.9 ± 4.7 to 34.9 ± 3.8 at 1 year. NYHA class improved from III to II, and VO2 max improved from 11.4 ± 2.4 to 13.2 ± 3.3 ml/kg/min. EF was 23.4% ± 11.2 pre-LSG and 27.3% ± 11.9 at 1 year post-LSG. Daily diuretic dose requirements fell from 108 ± 124 mg of furosemide to 46 ± 70 mg. No patients with HF have required LVAD or HTX after LSG. 1 patient with LVAD underwent HTX and 1 is nearly eligible due to LSG facilitated weight loss.  LSG appears to be safe and effective for weight loss in obese LVAD and HF patients. Patients had significant improvement in functional status and reduced daily need for diuretics. LSG facilitated HTX in a patient with LVAD due to adequate weight loss. Although no patients with HF required HTX or LVAD, the fall in BMI may allow some of them to be eligible for future HTX. Additional studies are needed to further delineate the safety and efficacy of LSG in obese patients with HF or VAD.

title: Sexuality in the palliative-terminal phase of cancer
abstract: The objective of this paper is to increase the knowledge on intimacy and sexuality during the palliative–terminal phase of cancer. For this purpose, qualitative information has been gathered during sexology consultations with surviving partners (usually when attending with a new partner). In the first stages of cancer the major targets are coping with the diagnosis and surviving. In this period most couples practice intimate cuddling. After the treatment stage, the process of recovery starts. Depending on the physical damage, their flexibility and their set of values, couples return to their premorbid levels of sexual functioning or below that. When the patient enters the palliative or the terminal stage other changes takes place. The need for pleasure, grief, love, relaxation, distraction, painkilling, affirmation or anger results in a wide variety of love-making. Some couples quit sex completely, some are satisfied with only petting, but others get into active, desperate and even violent sex. Frequently pain, tiredness, changed physical sensations and disturbed hormone levels interfere with these sexual needs. Listening to the reactions of patients in this terminal phase, sexology can learn some lessons. The variety of sexual reactions clearly shows that sex has many more meanings than only relation, recreation and procreation. Maybe the most impressive message is that sex is not only for the young, the healthy and the beautiful. In this phase quality of life becomes very important; patients, and their partners, deserve sexological care and attention. Since many treatment contraindications have disappeared, quality of life in general and quality of sexual life in particular can be improved by changing treatment interventions.

title: Sexual history taking: a dying skill?
abstract: Many adolescents are having sex and adolescents with life-limiting illnesses are no exception. It is therefore important for health care professionals to take a sexual history and provide advice about sexually transmitted diseases, unintended pregnancies, and ways of reducing high-risk sexual behaviors. Consultations should provide a forum for discussion and education. A literature review revealed no previous studies on this topic.



Our aim was to review medical consultations between adolescents with life-limiting illnesses and pediatricians to establish whether sex was discussed.



The clinical medical notes of 25 adolescents aged 12 to 18 years, under the care of a community team specializing in patients with nonmalignant life-limiting conditions at a District General Hospital in the United Kingdom (UK) were selected at random. Researchers retrospectively reviewed handwritten notes and typed letters in the medical records with a view to establishing whether a sexual history was taken on any occasion.



None of the health care professionals took a sexual history from any of the adolescents on any occasion despite multiple clinic attendances.



Sexual health is described by the World Health Organization as a basic human right. Clinicians may struggle to accept that adolescents with life-limiting illnesses may want to talk about sex, and this study has highlighted it as a topic that is generally ignored. Health professionals should include sexual health in routine palliative assessments. Adolescents with life-limiting illnesses should not be denied the right to holistic health care.

title: Brain cancer and sexual health: A case report
abstract: Cancer patients often encounter sexual concerns during the diagnosing, treatment, and recovery phase of their illness. However, the sexual concerns of these patients are often overlooked. Brain cancer patients are no exception to this oversight.  A case report of a 39-year-old patient with a history of high-grade anaplastic astrocytoma presented to the Sexual Health Program at the Memorial Sloan-Kettering Cancer Center complaining of vaginal discharge and several months of amenorrhea. Although the patient was administered extensive aggressive antineoplastic treatments, her disease rapidly progressed.  Despite the patient's terminal illness she continued to have normal sexual thoughts, feelings, and desires; however, she had difficulty discussing these issues with her partner and caregiver, who was her mother. An examination by the sexual medicine gynecologist noted no clinical signs of genital infections; however, there was minimal vaginal atrophy. Her sexual health laboratory evaluation was extensively abnormal. Her treatment consisted of intravaginal non-hormonal moisturizers and vaginal lubricants, counseling, and sexual education. The patient successfully engaged in sexual contact with her partner by the third counseling session.  Almost all oncology patients have sexual concerns during or following cancer treatment. These patients should be referred to comprehensive sexual health programs for treatment, if available.

title: Sexuality in palliative care: patient perspectives
abstract: This qualitative study investigated the meaning of sexuality to palliative patients. Face-to-face interviews were conducted with ten patients receiving care in a tertiary palliative care unit, a hospice or by palliative home care services in their homes. Several themes emerged. Emotional connection to others was an integral component of sexuality, taking precedence over physical expressions. Sexuality continues to be important at the end of life. Lack of privacy, shared rooms, staff intrusion and single beds were considered barriers to expressing sexuality in the hospital and hospice settings. Only one subject had previously been asked about sexuality as part of their clinical care, yet all felt that it should have been brought up, especially after the initial cancer treatments were completed. Home care nurses and physicians were seen as the appropriate caregivers to address this issue. Subjects unanimously mentioned that a holistic approach to palliative care would include opportunities to discuss the impact of their illness on their sexuality.

title: The impact of cancer on sexual function: a controlled study
abstract: Little is known about sexual problems in patients with cancer.  To estimate 1) the prevalence and characteristics of sexual dysfunction in patients undergoing treatment for cancer, 2) how sexual dysfunction varies with stage of illness. Cross-sectional study of outpatients with cancer attending palliative care and oncology services and matched patients without cancer attending general practice. Patients completed a questionnaire on sexual function designed in a feasibility study, the Derogatis subscale on sexual satisfaction, the GHQ12 and the EuroQol.  Patients with all types of cancer are willing to talk about their sex lives and the impact of the disease on their sexual function. This impact was significant when compared to the comparison group of general practice attendees of the same age. Palliative care patients were affected more than other cancer patients.  This work may lead to greater awareness among healthcare professionals that patients with all types of cancer may experience sexual difficulties. Addressing potential sexual problems during the course of disease may give patients confidence to discuss such issues as they occur, thus avoiding embarrassment or aggravation of the problems later in their illness.

title: Importance of sexual needs assessment in palliative care.
abstract: Sexuality is a fundamental aspect of being human. Guidance states that to support and improve the lives of adults with life-limiting illness, health professionals must address care in the social, psychological, spiritual and physical domains, yet no mention is made of the sexual domain. Palliative care aims to be holistic yet evidence suggests that sexuality is often overlooked when assessing care needs. This literature review will identify the issues that prevent sexual needs assessment in palliative care.

title: Changes in attitudes, practices and barriers among oncology health care professionals regarding sexual health care: Outcomes from a 2-year educational intervention at a University Hospital.
abstract: To examine the attitudes, practices and perceived barriers in relation to a sexual health care educational intervention among oncology health care professionals at the Landspítali-National University Hospital of Iceland.



The design was quasi experimental, pre - post test time series. A comprehensive educational intervention project, including two workshops, was implemented over a two year time period. A questionnaire was mailed electronically to all nurses and physicians within oncology at baseline (T1, N = 206), after 10 months (T2, N = 216) and 16 months (T3, N = 210).



The response rate was 66% at T1, 45% at T2 and 38% at T3. At all time points, the majority of participants (90%) regarded communication about sexuality part of their responsibilities. Mean scores on having enough knowledge and training, and in six of eight practice issues increased significantly over time. Overall, 10-16% reported discussing sexuality-related issues with more than 50% of patients and the frequency was significantly higher among workshop attendants (31%) than non-attendants (11%). Overall, the most common barriers for discussing sexuality were "lack of training" (38%) and "difficult issue to discuss" (27%), but the former barrier decreased significantly by 22% over time.



The intervention was successful in improving perception of having enough knowledge and training in providing sexual health care. Still, the issue remains sensitive and difficult to address for the majority of oncology health care professionals. Specific training in sexual health care, including workshops, should be available to health care professionals within oncology.

title: "The Body Gives Way, Things Happen": older women describe breast cancer with a non-supportive intimate partner.
abstract: Many women identify their intimate partner as important source of support during cancer diagnosis and recovery, but little is known about how women deal with breast cancer while in a relationship self-described as difficult. The purpose of this article is to describe the aging-related experiences of older women who were diagnosed with breast cancer while in a non-supportive, difficult intimate relationship.



Semi-structured qualitative interviews were conducted with a convenience sample of 16 women aged 55-84 years (mean 68.1 years) in community settings in the mid-Atlantic United States. Data were analyzed using hermeneutic phenomenological analysis.



Participants self-identified as being in a difficult intimate relationship (relationship length range: 1 year- 60 years, mean 35.6 years). Reasons for relationship difficulty ranged from intimate partner abuse to terminal illness. The findings included the themes: "At my Age": participants reflect on aging and breast cancer; breast cancer, sexuality, and aging; and silence.



Issues related to aging such as changes in sexual relationships, comorbidities, and partner illness complicated the women's breast cancer experience. Despite relationship difficulties, these women coped effectively with breast cancer in various ways. Study findings will increase awareness about the unique, complex needs of older women facing breast cancer with non-supportive intimate partners. Nurses should assess older breast cancer patients keeping in mind physical functioning, comorbidities, social support network, and quality of intimate partner support.