‘The person I get the gift of falling in love with when I die is myself’. – Molly Kochan
‘Orgasm with another person!’ – this is the celebratory refrain from a ‘bucket list’ in the recent Disney+ dramatisation ‘Dying for Sex’, based on a podcast which tells the real story of Molly Kochan, diagnosed with terminal breast cancer in her 40s. In the show we see the transformative potential of having the right support to pursue sexual aspirations and pleasure during palliative care and serious illness. We may also note how radical this pursuit seems to be, not only in the context of cancer stories and palliative care but in wider aspects of life where people, especially women and gender minorities, are discouraged from seeking and claiming the sexual freedoms that they would like.
Background: Think universal
We know there is a widespread silence and stigma around sex and pleasure in general. For example, in a recent systematic review investigating sex life concerns and contraception, it was identified that pleasure is woefully overlooked, even though people stop using contraception when it stops them having the kinds of sex they want. After screening over 16,000 articles, only two studies were identified that directly addressed ‘sex life concerns’ like pleasure, in relation to contraception. Indeed, even though pleasure is arguably the key reason people have sex, it is very rarely factored into sexual health programming, let alone other clinical realms.
Wellbeing in relation to sex and sexualities tends to be conceptualised and operationalised in a ‘pleasure deficit’ where the risk and negative outcomes of sex are focused on and ‘death, danger and disease’ dominate. This is despite recognition of the critical importance of sexual wellbeing and pleasure for example, in the official definition of sexual health by the WHO, and the Guttmacher-Lancet commission 2018. We also know that safer sex, sexual wellbeing and pleasure are extremely important for individual health and identity, have implications for gender equity and justice and therefore contribute to family, societal and global wellbeing.
The discipline of palliative care has an acute awareness of the need to enrich and enhance quality of life. However, like other domains of healthcare, palliative care most often overlooks or avoids sex and pleasure, a situation frustrated by social, interpersonal and physical impacts of illness for example, as identified by research, shifts in roles between partners due to care needs and desexualisation, body image impacts and effects of previous treatment regimens. A recent scoping review about sexuality and intimacy in end of life and palliative care has identified how healthcare providers tend to deprioritise sexuality and intimacy due to a number of underlying drivers, for example, ‘paternalistic attitudes and judgment about appropriate versus inappropriate behaviour during end-of-life’ (p. 387).
Increasingly, researchers, clinicians and campaigners are focused on identifying solutions and responding to need in palliative care, as illustrated by recent publications in Palliative Medicine about sexual health at end of life and the impact of advanced cancer on sexual relationships respectively. What is acknowledged is how little we know about sexual wellbeing in this area and what could be done to respond meaningfully to the needs of palliative care patients.