How to Address Sexuality and Intimacy with People Living with a Serious Illness

Palliative care focuses on improving the quality of life for patients with a serious illness, and clinicians are trained to address a range of psychosocial and emotional challenges that come with illness. However, exploring intimacy and sexuality is one area that is often overlooked in a routine palliative care assessment. Questions such as how a patient’s illness has affected their relationships or intimacy may open a door that patients may never have thought to bring up, because they didn’t know how to approach the topic.

Most of the sexual health research and training focuses on sexual dysfunction or sexual risk-taking behavior and fails to evaluate the impact illness and aging on sex. Studies suggest that patients want to discuss intimacy and welcome their health care providers raising this topic.^[1][2]

Gilley (1988) defined sexuality in the context of serious illness as “the capacity of the individual to link emotional needs with physical intimacy.”^[3] Redelman (2008) defines sexuality both as including feelings, values, beliefs, and experiences either individually or with a partner.^[4] Intimacy can be broadly defined to include emotional and physical closeness, touching, love, and social relationships. Physical intimacy is often an indicator of a deeper intimate relationship and can happen with or without sex.

There is limited research on intimacy for those experiencing a serious illness. Most studies related to intimacy focus on cancer and sexual dysfunction, and very few explore the impact on quality of life. Lee et. al (2016) described the association between serious illness and lower levels of sex; participants reported adapting, finding strength in their relationships, despite challenges with sex.^[5] Strength in relationships and support was also noted in several studies by this author. In addition, physical changes associated with serious illness were noted to have a negative impact on sex (Kelemen, 2022).^[6]

Despite patients wanting to discuss this topic, providers fail to initiate conversations to explore intimacy (Hordern, 2007; Kelemen, 2016, 2022).^[7][1][6] Health care professionals might be uncomfortable with the conversation as they often only think of intimacy with young patients, who are healthy and able-bodied. In addition, they may feel it’s too personal to discuss or feel they are not trained to address this topic.

Cora is a 78-year-old female with heart failure admitted to the hospital with fluid overload. During a routine palliative care assessment, the social worker asked how her relationships have been affected secondary to her illness. She shared about the death of a long-time partner a few years ago, and how she turned to God and family for support.

When the social worker asked how intimacy has been affected by her illness, she reflected on a recent conversation with her primary care doctor who simply asked if she was “active”. (At the time, Cora responded to her doctor by talking about her daily walks, but later learned the doctor was referring to sex. Cora wished the primary care doctor, who seemed uncomfortable, had just asked about sex.) With the social worker, Cora discussed what intimacy meant to her; she was aging and noted not having sex as a loss. She also missed intimacy with close friends who were also aging, which makes it harder to gather socially. Cora appreciated being able to openly share this information, and within the conversation reflected on multiple losses associated with her illness.

The above case example highlights the discomfort many health care professionals have with this topic. Intimacy can be an emotionally loaded topic, so shame and embarrassment on the part of both patient and clinician can influence communication. Clinicians may not feel trained to address this topic or feel they lack the training to initiate the conversation and address questions accurately.

• How has your illness affected your relationships?
• How has your illness impacted intimacy?
• Are there any worries or concerns regarding sex? (e.g. fear low libido, etc.)
• Help me understand what intimacy means to you and how that has changed over the course of your illness?
• Would it be helpful if I discussed any of this with other members of the health care team today?

The above questions can serve as a guide to help initiate a conversation during a routine palliative care assessment. If a patient describes areas that may be beyond a scope of practice (e.g. social worker identifying a need for medication management) then one can utilize the interdisciplinary team or refer to a specialist.

For patients that are more withdrawn, follow their lead and perhaps start with a question about relationships. If they engage, then you can move on with additional intimacy questions. If a patient is shy, try normalizing the conversation, stating, “This is something I address with all of my patients and if it’s too personal, just let me know. And, please know if any issues arise I am happy to address them in the future.” Finally, patients might not need anything “fixed” and initiating a conversation and allowing for a safe space to process emotions can be a primary intervention.

Patients living with a serious illness may have questions and concerns about sex and intimacy, which may have not be proactively addressed by other health care providers. As palliative care clinicians are skilled at discussing topics often perceived as “uncomfortable” (e.g. advance care planning, prognostic awareness, spirituality, etc.), they may serve their patients well by including straightforward screening questions about the impact of illness on intimacy and relationships.

Edited by Melissa Baron. Clinical review by Andrew Esch, MD, MBA.