INTRODUCTION — Palliative care is an interdisciplinary medical specialty that focuses on preventing and relieving suffering and on supporting the best possible quality of life for patients and their families facing serious illness. The primary tenets of palliative care are symptom management; establishing goals of care that are in keeping with the patient’s values and preferences; consistent and sustained communication between the patient and all those involved in his or her care; psychosocial, spiritual, and practical support both to patients and their family caregivers; and coordination across sites of care. Palliative care aims to relieve suffering in all stages of advanced or serious diseases and is not limited to end-of-life care. (See "Benefits, services, and models of subspecialty palliative care".)
Sexuality is an important issue for many patients with serious illnesses and their partners, yet this is a subject that health care professionals often do not address in the palliative care context [1-3]. Sexuality is intrinsic to a person’s sense of self throughout their lifespan [4,5], and it can be a vital form of expression that helps to relieve suffering, offer meaning, and maintain interpersonal connection in the face of serious illness . Sexuality does not refer to just a physical act but more broadly encompasses identity, gender roles and orientations, eroticism, pleasure, and intimacy. It is experienced and expressed through thoughts and feelings in addition to behavior . Guidelines from the National Coalition for Hospice and Palliative Care recommend that social assessment include the impact of illness on intimacy and sexual expression . This topic will review issues related to sexuality in palliative care. A more in-depth discussion as to the general approach to patients with sexual dysfunction is presented elsewhere. (See "Overview of male sexual dysfunction" and "Evaluation of male sexual dysfunction" and "Overview of sexual dysfunction in women: Epidemiology, risk factors, and evaluation".)
SCOPE OF THE PROBLEM — Although there are limited data, there appears to be a high prevalence of sexual dysfunction in the palliative care population [9-13]. In addition, the frequency and type of sexual dysfunction among patients in palliative care appear to vary by the underlying disease process [11,14-19]. Representative findings on the scope of this issue are given below:
●Among 97 palliative care patients screened about impact of their illness of intimacy, 91.7 percent reported they had never been previously asked about this topic and 48.4 percent reported that their illness had significantly negatively impacted intimacy .
●In one study of 65 patients admitted to an acute pain and palliative care unit, 86 percent considered sexuality important enough that they wanted to talk about it with a knowledgeable clinician .
●In another study of over 400 patients with heart failure, 59 percent reported sexual dysfunction .
●Among 65 patients with advanced cancer (25 male, 40 female), 52 percent reported having no sexual intercourse and only 11 percent reported mild to good frequency of intercourse . Sexual satisfaction was reported as good, mild, insufficient, and nonexistent in 12, 12, 30 and 46 percent, respectively. Sexual satisfaction was significantly associated with age, performance status, and self-reported wellbeing.
●Concerns about decreased libido are reported by at least 21 percent of patients enrolled in palliative care programs, although these figures are higher in specific populations. For example, 56 to 80 percent of patients with amyotrophic lateral sclerosis (ALS) or progressive multiple sclerosis (MS) report problems with libido [14-17].
●Among patients with advanced cancer, 57 percent of females and 68 percent of males rated sexual quality of life as an important factor .
●In a study of patients with either terminal cancer or motor neuron disease and their partners, participants reported a range of factors that negatively impacted the experience of “connecting with their partner,” such as disfigurement and disabling effects of medical equipment . However, both patients and their partners wanted the opportunity to discuss concerns about their intimate relationship.
●In an interview study with patients receiving care in a palliative care setting, all participants felt that sexuality should be addressed as part of their care, and the need for physical nurturing was consistently reported as being an important quality-of-life element .
Despite the high incidence of sexual dysfunction and the clear importance of these issues to patients, only a minority of patients enrolled in palliative care programs report ever being asked about concerns related to sexuality [22-25]. In one study involving 348 patients at 16 different hospice settings, hospice staff reported a lack of sufficient information to assess issues with sexual interest or activity in the majority of patients . In a chart review study of 25 adolescents with life-limiting illness, it was noted that no health care professionals took a sexual history on any occasion, despite multiple opportunities . The lack of inquiry may be attributed to discomfort in approaching sexuality by health care workers or to the fact that sexual problems are not the presenting symptom .
Sexuality is also important to the partners of patients with advanced disease. In one study, 84 percent of individuals whose partner had a cancer of the reproductive system and 76 percent of those whose partner had another type of cancer reported a negative impact on their sexual relationship . These changes in sexuality and intimacy were associated with reports of self-blame, rejection, sadness, anger, and lack of sexual fulfillment among partners. However, couples living with serious or life-limiting illness also report that despite changes in how sexuality may be expressed, sexuality and intimacy remain important, life-affirming elements of their relationship .
PERCEIVED BARRIERS TO DISCUSSING THE ISSUE — Because clinicians involved in the palliative care of patients often focus most of their time, attention, and effort on treatment of the primary disease process, associated symptoms, and complications, little thought may go into sexual health. However, there are many other barriers hindering the discussion of sexuality for patients in palliative care, which are similar to those in other areas of medicine:
●Lack of adequate training – Most health care professionals are not adequately trained in discussing sexuality, including how to take a sexual history [29-31]. Clinicians who receive training in communication skills and sexual history taking are more likely to take a sexual history [30,32].
●Assuming sexuality is only about intercourse – Health care providers often take a narrow view of sexuality by assuming it only encompasses one’s capacity for sexual intercourse. For patients in palliative care who may be unable to engage in intercourse or other physical expressions of sexuality, clinicians may wrongly assume that sexuality is of little importance.
●Assuming older patients and those without a partner are not interested in sexuality – In the palliative care setting, providers may not recognize the importance of sexuality in older patients and those who lack a partner. Despite this, data from other areas of medicine consistently show evidence to the contrary [33,34]. As an example, in one study of healthy older United States adults, 73, 53, and 26 percent of respondents who were aged 57 to 64, 65 to 74, and 75 to 85, respectively, were sexually active .
●Assuming treatments are not available – Providers may feel that little can be done to help seriously ill patients who have sexual dysfunction and that treatment would not be effective. Despite this, interventions that facilitate flexible coping (ie, interventions aimed at helping patients and partners broaden the way they conceptualize sexuality and intimacy) can improve sexual and relationship satisfaction across the continuum of care, including at the end of life . As an example, a brief sexual health intervention with ovarian cancer patients showed significant improvements in overall sexual function, including sexual satisfaction . (See 'Treatment of sexual dysfunction' below.)
●Provider discomfort – Providers may feel embarrassed or unprepared to discuss sexual issues . This may be due to differences between patient and provider in relation to culture, socioeconomic status, age, gender, or race.
●Sexual minority patients – Providers may be uncomfortable taking sexual histories from patients whose sexual orientation is different from their own . This can result in a stigmatization of sexual minority patients who may in turn perceive themselves as being “invisible” to their providers . The biases and discrimination that lesbian, gay, bisexual, and transgender (LGBT) patients face in the health care system in general are also reflected in end-of-life care. LGBT people report the need for providers to avoid heterosexist assumptions and include partners in decision-making; sexual minority patients are also concerned about potential discrimination when hospice care is provided by a faith-based organization that may not be accepting or affirming of sexual diversity .
The American Society of Clinical Oncology (ASCO) has developed a position statement on care for patients from sexual and gender minority communities .
While it is unrealistic to expect that all clinicians involved in the palliative care of patients become experts in sexual care and counseling, the National Consensus Project for Quality Palliative Care recommends that clinicians should be able to screen for sexual dysfunction and/or distress. If identified as a significant issue for patients and their partners, appropriate referral may be made to other specialists or health care providers when indicated.
TAKING A SEXUAL HISTORY — Exploration of the patient’s (and partner’s) concerns and beliefs about sexual function may uncover or clarify issues that can be addressed through specific therapeutic maneuvers, educational materials, or simple reassurance. A nonjudgmental, accepting, empathetic attitude and the use of open-ended questions in an environment that is conducive to the sensitive nature of the discussion can foster communication. In general, when taking a sexual history, the terminology used by the clinician should be understood by the patient.
Examples of some routine questions that can be asked during the patient interview include the following:
●“Many of my patients with similar conditions have questions about how their illness impacts sexuality or intimacy. Do you have any concerns you would like to discuss?”
●“The kind of treatment you have received can make it difficult to be intimate with your partner. Does this bother you, and if so would you like to talk about it?”
●“Is a physical relationship with your partner an important part of your life, and has your current illness significantly impacted this?"
●“Finding private time alone may be difficult in your current living situation. Is this a problem for you and your partner?”
●“Is there anything we can do to help you regain an experience of intimacy with your partner?”
●“It can be challenging to talk with your partner about changes in intimacy and sexuality. Would you like to get some support for you and your partner talk about these changes?”
EVALUATING SEXUAL DYSFUNCTION — Although not all the recommendations are applicable to palliative care patients, an American Society of Clinical Oncology (ASCO) Clinical Practice Guideline adaptation of Cancer Care Ontario’s guideline on interventions to address sexual problems in individuals with cancer recommends :
●A discussion with the patient, initiated by a member of the health care team, regarding sexual health and dysfunction resulting from cancer or its treatment. The conversation could include the patient’s partner if the patient wishes. Discussions should be congruent with the patient’s literacy level, cultural/religious beliefs, and sexual orientation.
●Health care providers should screen for overall sexual functioning and satisfaction, and a diagnosis should be established when there are physical issues playing a contributory role.
●Psychosocial and/or psychosexual counseling should be offered as appropriate, aiming to improve sexual response, body image, intimacy and relationship issues, and overall sexual function and satisfaction.
●For women, specific recommendations are made for the management of hypoactive sexual desire, vasomotor symptoms, and genital symptoms, such as dyspareunia, vaginal dryness, vaginismus, or pelvic floor dysfunction.
●For men, specific recommendations are made for management of erectile dysfunction, stress urinary incontinence, and vasomotor symptoms and for prevention of penile length loss. The recommendations also support checking testosterone levels, even if the patient has a cancer that is not typically associated with hormone changes. Options should be discussed when testosterone levels are within normal range but the patient or clinician feels that supplementation might have a clinical benefit and it is not contraindicated. (See "Overview of sexual dysfunction in male cancer survivors", section on 'Screening and counseling'.)
Addressing sexual health — The extended PLISSIT (permission, limited information, specific suggestions, intensive therapy) model for addressing sexuality and sexual health is appropriate for palliative care patients  and can serve as a useful framework for clinical inquiry . It emphasizes the need for reflection and review as well as the importance of consistent follow-up. This framework, which extends the original PLISSIT model  by placing permission giving at its core, was developed because of concerns that practitioners often bypass permission giving and go straight to providing information without giving patients the opportunity to express any concerns they might have. Use of this model is helpful in deciding which problems may be addressed by the primary clinician and who should be referred for specialized care. Permission giving is both the first step of addressing sexuality with patients and also a key aspect of subsequent stages in the model.
The extended PLISSIT model has four stages of treatment; the first three can be performed by any clinician:
●Permission (P) – The first stage can be accomplished by acknowledging (giving “permission”) to patients that sexuality continues to be part of life throughout the lifespan and that it is valid to discuss sexual problems even near the end of life or when people are living with serious illness. By normalizing this topic, permission giving also invites patients to initiate a dialogue about their concerns and allows for discussion on potential interventions tailored to their needs.
●Limited information (LI) – This involves acknowledging that sexual health concerns are valid and relaying information about how illness and treatment may be impacting sexuality. As an example, anxiety over the safety of sexual activity may be present in both the patient and their partner (who may fear causing discomfort or harm to the patient through sexual intercourse). Indicating that such concerns are not uncommon and can result in anxiety in many people in a similar situation can be reassuring to patients and allow them to more openly discuss their own situation.
●Specific suggestions (SS) – Once the clinician learns the patient is suffering from sexual dysfunction, an assessment exploring possible contributory factors should follow. A general discussion of organic versus psychological causes of sexual dysfunction is provided elsewhere. (See "Overview of sexual dysfunction in women: Epidemiology, risk factors, and evaluation" and "Evaluation of male sexual dysfunction".)
It is at this point that specific suggestions need to address aspects of sexual health, including concerns about role changes and self-esteem that are tailored to the patient. Specific suggestions include rendering specific advice on issues raised, such as:
•The use of lubricants and/or vaginal moisturizers for patients who have excessive vaginal dryness and/or discomfort
•Experimenting with different sexual positions to reduce discomfort, or changing one’s routine to engage in physical intimacy when one has more energy (eg, morning rather than evening time, planning ahead rather than relying on spontaneity)
•Addressing privacy concerns and barriers to privacy, such as helping couples strategize how to create private time or recommending placing a lock on the bedroom door
•Helping manage concomitant issues such as pain and/or fatigue
In addition, simple and specific suggestions for intimacy that may be appropriate include focusing on touch, massage, cuddling, and intimate communication in place of sexual intercourse.
●Intensive therapy (IT) – For clinicians who find themselves without the prerequisite skill set to further discuss sexual health issues with patients, referral to a specialist for intensive therapy or specialized support is appropriate. Reasons may also include more in-depth counselling for prior traumatic events (eg, prior rape or sexual abuse) or for further discussion about sexual therapeutics.
Issues specific to palliative care populations — Careful history taking with attention to medications (both prescription and over the counter), alcohol use, prior treatments, current symptoms, and comorbid conditions is essential. While this is not necessarily different from evaluation of sexual dysfunction in patients who are not dealing with an advanced terminal illness, there are some unique issues that are specific to palliative care populations:
●The clinician should ask about the presence of specific symptoms such as:
•Fatigue – Fatigue is one of the most commonly reported symptoms in patients receiving palliative care, and it can clearly impact sexual function [45,46]. Many clinicians are unaware that fatigue can be treated even in patients who are nearing the end of life. (See "Overview of fatigue, weakness, and asthenia in palliative care", section on 'Management' and "Cancer-related fatigue: Treatment".)
•Dyspnea – Dyspnea is a common complaint in patients in palliative care programs, affecting up to 50 percent of patients in some series . It can have a major impact on quality of life, including sexual function . Sometimes a maneuver as simple as changing sexual positions or sexual roles (ie, aggressive versus passive) may be helpful. (See "Assessment and management of dyspnea in palliative care".)
•Depression – Depression is common in patients enrolled in palliative care programs [48,49]. One of the cardinal symptoms is loss of interest or pleasure in activities such as sexual intercourse. (See "Assessment and management of depression in palliative care".)
●A review of medications is essential. Multiple medications known to inhibit sexual function are commonly administered in palliative care, including:
•Antidepressants – Many of the newest and most effective antidepressants of the serotonin reuptake inhibitor class (eg, fluoxetine, sertraline, paroxetine) are burdened by sexual side effects, which can diminish both libido and erectile function. (See "Sexual dysfunction caused by selective serotonin reuptake inhibitors (SSRIs): Management".)
•Opioids – Opioids can interfere with sexual function regardless of the delivery route employed [50,51]. Many palliative care patients receive chronic opioid therapy, which is known to lower testosterone levels in men and lead to amenorrhea in women [52,53]. (See "Prevention and management of side effects in patients receiving opioids for chronic pain", section on 'Neuroendocrine effects'.)
•Continued active therapies – Although many patients in palliative care are no longer receiving active treatment for their illness, this may not be the case universally. Therefore, it is important to recognize that the effects of treatments, particularly anticancer treatments, include sexual dysfunction, which may be more prominent in women than men . (See "Ovarian failure due to anticancer drugs and radiation".)
●Alterations in body image can be quite dramatic at the end of life. Changes in physical appearance can be related to the underlying disease state or from the treatments themselves. Unfortunately, such changes may play a larger role in sexual dysfunction in palliative care patients than in other settings. The presence of percutaneous drainage or feeding tubes, tracheostomies, colostomies, chronic draining wounds, or decubitus ulcers with accompanying foul odors can impede sexual function . Once these issues are recognized, health care professionals can attempt to create innovative solutions. Trained stoma therapy nurses or technicians can be of great assistance in such cases. (See "Ileostomy or colostomy care and complications", section on 'Sex'.)
ADDRESSING THE PARTNER’S NEEDS — Clinicians should be sensitive to issues for the spouse or partner and help to direct them to local resources that may be helpful. The issues surrounding a serious and/or life-threatening illness affect more than just the patient; they affect those closest to the patient. Therefore, changes in sexuality due to advanced disease often have a profound impact on partner as well as on the couple’s relationship itself .
As partners shift into the role of primary caregiver, established sexual roles and normative expectations may be significantly altered due to caregiver duties, burdens, and potentially burnout. Partners may find themselves unsure of how to express affection, how to alternate between their multiple new roles, and how to communicate about their own needs for intimacy as their loved one approaches the end of life.
TREATMENT OF SEXUAL DYSFUNCTION — Patients (and their partners) should be reassured that if they have enjoyed a close sexual relationship, intimacy can continue to be a valued aspect of their relationship, even in the setting of advanced disease or near the end of life. For many patients and their partners, sexual activity takes on a different form and meaning as they face this phase of life. With rare exceptions, procreation is no longer the goal of sexual activity. Patients tend to report greater emphasis on emotional connection and expressions of intimacy and closeness rather than on physical expressions of sexuality. Massage, touch, sharing, reflection, cuddling, and other intimate activities may serve as alternate ways to express affection and love [22,57].
Understanding the concerns and needs of the patient and partner for sexuality can greatly enhance the health care team's ability to offer help and solutions. In general, as it is in patients who are not at the end of life, treatment should be directed at the underlying cause, if one is identified. (See "Overview of male sexual dysfunction" and "Treatment of male sexual dysfunction" and "Overview of sexual dysfunction in women: Epidemiology, risk factors, and evaluation" and "Overview of sexual dysfunction in women: Management".)
Hormonal therapies — Most treatments for sexual dysfunction are appropriate for palliative care patients, including the use of vaginal hormone therapy to help restore vaginal health in women and testosterone replacement therapy to address low libido in men. However, certain treatments may not be appropriate for some patients.
For example, while multiple studies in postmenopausal women have shown some improvement in libido and sexual function with testosterone therapy along with estrogen replacement [58-63], use of testosterone in the absence of estrogen was not effective in improving libido in female cancer survivors . In addition, women with hormone receptor-positive breast cancer may not be able to take hormonally based therapies. (See "Menopausal hormone therapy and the risk of breast cancer", section on 'Personal history of breast cancer'.)
Many women taking hormonal therapy for hormone receptor-positive breast cancer report significant genitourinary symptoms, including vaginal dryness and dyspareunia, which can interfere with intercourse and the experience of desire. First-line treatment of symptoms of vaginal atrophy in women with breast cancer includes nonhormonal options (lubricants, moisturizers). Women with symptoms that are not ameliorated with moisturizers and lubricants may consider use of low-dose vaginal estrogen or vaginal dehydroepiandrosterone (DHEA, prasterone). However, a careful discussion of the risks versus the benefits is appropriate, as there are concerns regarding elevated levels of systemic estrogen with these therapies, which are especially relevant in women who are taking an aromatase inhibitor. This is discussed in detail elsewhere. (See "Approach to the patient following treatment for breast cancer" and "Approach to the patient following treatment for breast cancer", section on 'Sexual dysfunction'.)
Women with breast cancer who have reported dyspareunia that is associated with pain at the vulvar vestibule have been successfully treated with a topical lidocaine formula applied to the introitus. (See "Treatment of vulvodynia (vulvar pain of unknown cause)", section on 'Topical lidocaine ointment'.)
Discontinuing medications — Careful review of medications may identify ones that are contributing to sexual dysfunction and can be discontinued. This includes medications not directed towards the palliation of symptoms, such as those originally initiated to prevent worsening of a chronic medical condition and/or to reduce the risk of complications in the future. (See "Palliative care: The last hours and days of life", section on 'Eliminating non-essential medications' and "Deprescribing".)
Addressing range of motion — Decreased flexibility and mobility can be major impediments to comfortable sexual activity. If appropriate to the goals of care, physical therapy and an evaluation for rehabilitation (with specific attention to sexuality) may be of great help.
Importance of privacy — Lack of privacy is a major impediment to sexual activity for patients confined to nursing homes, hospitals, or hospice inpatient units. Most inpatient care facilities are not equipped to allow sexual contact. Rooms may not be private, and even those that are often have no locks on doors or other mechanisms to preclude unwanted intrusions by staff, visitors, or other residents . Patients also know that their lives are freely discussed among the staff, and this may be enough to inhibit sexual behaviors. In addition, hospital beds, which tend to be single, do not easily accommodate two people. These beds often make physical intimacy, such as sustained holding and caressing, more difficult.
Allowing patients privacy in institutional settings where little privacy otherwise exists can be helpful. In one hospice, a telephone system is available where intimacy can be shared via telephone . While this does not allow for tactile interactions, patients and partners have viewed the program favorably. Care facilities should develop systems where patients can have quality, protected private time with their partners without fear of interruption. Providing items necessary for sexual intimacy and safety, such as lubricants and condoms, is relatively simple and can help provide for the whole patient care that is the touchstone of palliative care.
Multidisciplinary care — A multidisciplinary team approach may be needed to adequately address sexual dysfunction in palliative care patients. Depending on the case, team members may include clinicians, nurses, enterostomal and physical therapists, social workers, psychiatrists, psychologists, pharmacists, spiritual advisors, or others who may be unique to the individual patient circumstances. It is often useful in palliative care settings to identify a working list of key resources, including providers such as sexual health counselors, that can be made available to patients and partners. Understanding the specific concerns and needs of the patient and their partner for sexual expression will greatly enhance the health care team’s ability to offer help and solutions.
●Sexuality is an important issue for patients with an advanced serious and/or life-threatening illness who are nearing the end of their life, as well as for their partners. The frequency of sexual dysfunction is highly dependent upon the specific disease. (See 'Scope of the problem' above.)
●Despite the high incidence of sexual dysfunction and the importance of these issues to patients and their partners, most patients enrolled in palliative care programs are not asked about concerns related to sexuality. Many of the barriers to improving sexuality in end-of-life care are similar to those that hinder efforts to deal with sexual issues in all areas of medicine. (See 'Perceived barriers to discussing the issue' above.)
●Exploration of the patient’s (and partner’s) concerns and beliefs about sexual function may uncover issues that can be addressed through specific therapeutic recommendations, educational materials, or simple support and reassurance. Patients and partners are often additionally burdened by the feeling that this topic is taboo, and they can be greatly relieved by having validation that sexuality is a normal part of human experience across the lifespan. (See 'Taking a sexual history' above.)
●In patients with sexual dysfunction, a thorough assessment exploring all possible contributory factors should be carried out. Patients should be specifically asked about fatigue, dyspnea, depression, and altered body image. (See 'Evaluating sexual dysfunction' above.)
●The extended PLISSIT (permission, limited information, specific suggestions, intensive therapy) framework for communicating about sexuality is useful for counseling and is appropriate for palliative care patients. (See 'Addressing sexual health' above.)
●In general, as it is in patients who are not at the end of life, treatment should be directed at the underlying cause, if one is identified. Most treatments for sexual dysfunction are appropriate for palliative care patients. (See 'Treatment of sexual dysfunction' above.)
ACKNOWLEDGMENT — The editorial staff at UpToDate would like to acknowledge Timothy Moynihan, MD, who contributed to an earlier version of this topic review.