A patient-centred approach to sexuality in the face of life-limiting illness

Patients and their partners value opportunities to discuss issues of sexuality and intimacy with trusted health professionals.1,2 In advanced disease, people often feel robbed of past joys which their sexuality may help them to regain.3,4 Communicating about sexuality can be difficult for health professionals; they may lack time, may not know how to begin the conversation, feel they know little about sexuality or do not have the answers patients seek.5 Health professionals also struggle personally and professionally to accept that people with a life-limiting illness, especially older people, continue to be sexual beings.6,7

There is an assumption that sexuality equates with sexual intercourse and function.8,9 Publications that focus on a person’s ability to perform sexual intercourse after the diagnosis of a life-limiting illness reinforce this narrow view of sexuality.10 Sexual function is only one dimension of sexuality and intimacy.1,2,9

The World Health Organization defines human sexuality as:

Cultural beliefs,12 stressors13 and all relationships affect a person’s unique sexuality.1,14 Intimacy, touch, self-esteem,15,16 emotional and social interactions with people,1,17 and communication14 help capture sexuality. Sexuality is inextricably linked to a sense of wholeness, which is threatened by life-limiting illness.3

“Intimacy” is often used as a euphemism for sexual function.15 However, intimacy has been described as the sharing of identity, mutual acceptance, closeness and reciprocated rapport, which are more closely linked to communication than to sexual function.18 Intimacy, like sexuality, is intrinsic to a sense of self. By contrast, the diagnosis of a life-limiting illness can be the ultimate threat to the sense of self, and the basis of suffering.19

Attitudes, values and assumptions about patient sexuality have an impact on communication by health professionals.5,15 Patients in qualitative studies reflect that few health professionals are willing to engage in open discussions about sexuality.9,20,21 Patients “suffer in silence” as they assume that, if sexuality and intimacy were important, health professionals would discuss them.1,22,23

As elderly people make up 65% of those needing palliative care,24 ageist assumptions by health professionals have particular impact. Health professionals may assume that elderly people are no longer sexually active and not interested in issues related to intimacy.6,17 Our community is just beginning to “come to terms with sexual behaviour continuing into old age”.17

Little has been published about patient perspectives on sexuality or intimacy in palliative care.3,4 In the face of a life-limiting illness, it is often assumed that a person’s desire for survival overshadows their sexuality and desire for intimacy.18 While this may be true immediately after diagnosis, most people hope to “get on with life”, with sexuality and intimacy playing important roles.3,25 In addition, at the time of diagnosis of a life-limiting illness it is common for a person to long to be held, with touch as an intimate form of communication to help redress suffering.5

Patients are often relieved to hear that other people with life-limiting illness have experienced similar issues with intimacy and sexuality. Many value discussing sexuality with a health professional they know, rather than being referred to someone else,26 and most do not want counselling or referral to a sexual counsellor.22 They are usually seeking validation of their concerns, normalisation of their experience, and practical advice.2 People want to reaffirm themselves as sexual beings, take control of their health and adjust to their changing circumstances.15 Discussing changes in their sense of self and sexuality is empowering for patients and for the health professionals caring for them.1,21,22

It is common for patients to re-evaluate their lives and even change priorities in the face of a life-limiting illness.15,26 Spending time alone or with a partner and allocating time for self-indulgence may be a new priority. Yet negotiation and explanation between long-time partners may be required as part of the open communication process. Health professionals can encourage people to set aside specific times for sexuality and intimacy. At home, suggest turning on the answering machine, not answering the door, using babysitters, and putting sexuality and intimacy on the agenda. Patients may want to dress up for the occasion, have a bath alone or with a partner, and set the scene with candles and dim lighting.28

For inpatient units, creating an atmosphere of space, trust and respect is often difficult, but can be achieved. If a door is shut or a curtain closed, health professionals need to consider patient privacy. Knocking and asking permission to enter, providing and respecting “Do not disturb” signs, encouraging the use of family or “quiet rooms”, and having a double bed for patient use are ways of adapting an inpatient environment.

Learning to adapt to a changed body, new orifices or body parts (such as a breast or testicular prosthesis), altered sensory patterns, fatigue and ongoing illness takes time and patience. Health professionals can encourage people to communicate their fears and concerns and offer practical strategies, such as wearing clothing that increases their confidence in their changed bodies (eg, a camisole or waistcoat to conceal scars, and adhesive stomal bags or plugs to conceal stomas). Patients may also require advice about lubrication, position changes, and medication and its effects on libido and sexual function29 (Box 2). They are sometimes also looking for guidance as to how and when they can share with their partner how it feels to have a life-threatening illness and how it has affected them psychologically and physically.

Health professionals must incorporate patient sexuality and intimacy into routine palliative assessments, so that every patient is given an opportunity to explore these issues. Patients and their partners will appreciate health professionals providing information, support and practical strategies related to issues of intimacy and sexuality throughout the course of care. Resources on sexuality and intimacy in the face of illness for health professionals, patients and carers, are shown in Box 2.