Sex And Intimacy Part 2

“Issues around sexuality and sexual frustration are frequently raised by disabled people who feel that they have less opportunity and ability to explore their sexuality than others. Through a lack of understanding, education, and a general lack of services, disabled people frequently cannot access the support that would make it possible for them to make the sorts of choices around their lifestyles that most of us take for granted.”

Enhance the UK, Undressing Disability

Conversations around sex and intimacy are hard enough at the best of times but they become even more difficult when the person at the centre of those talks has a life-limiting illness or a disability. For many patients at ellenor, a hospice charity supporting people across Kent these discussions are especially complex. However, ellenor dedicated to overcoming these barriers, giving patients the space and support they need to talk openly about their needs.

But it doesn’t have to be that way.

This article will explore some of the barriers that make it difficult for patients to talk about their needs related to sex and intimacy. These obstacles also make it harder for their carers and healthcare staff to offer the right support. The challenges include the trauma of medical touch, concerns about bodily autonomy and consent, and the harmful stereotypes and assumptions that get in the way of understanding.

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The ‘medical touch’ – and its impact on sex and intimacy

One key barrier to sex and intimacy for life-limited patients is the trauma of medical touch.

Charlotte Mead – Clinical Nurse Specialist at ellenor – explains.

“Picture a patient under medical care who, every time they’ve been touched, has experienced pain. They’ve been injected with needles; had cannulas inserted; felt the cold discomfort of a stethoscope on their skin. None of these touches have been kind – only clinical. Now think: how does that change your opinion of touch? Does it make you frightened of it? And how does that affect your romantic relationships?”

This raises another question: What happens when a spouse or partner becomes a caregiver?

“If your partner’s touch becomes something that’s delivering a need – washing you, dressing you, feeding you – their touch can become part of that medical world”, Charlotte explains.

“What kind of impact does that have on your sex life?”

The issues of bodily autonomy and consent

Barriers to intimacy also arise around bodily autonomy and consent. Life-limiting conditions, like Motor Neurone Disease (MND), for example, can leave patients without the strength to control their muscles, move their limbs, or even speak.

"When a patient can’t speak, move, or even nod their head to say ‘yes,’ how can we ensure their consent is respected?" Charlotte asks.

The challenge goes beyond consent – it’s about patients' relationships with their own bodies. Medical devices, surgeries, or treatments can alter a person’s body image and sense of self, making it harder to engage in intimate relationships.

“Think about the impact medical devices – such as catheters, renal fistulas, stoma bags, pick lines, or midlines; or major surgery, such as the removal of a person’s breasts or penis – have on a person’s body image. How does that change the sense that this is ‘my’ body – because what happens if you look in the mirror and it doesn’t feel like your body anymore? How can you be present enough in your body for a good sex life and good intimacy with your partner?”

At ellenor, the team is working hard to address these deeply personal concerns, ensuring patients feel empowered and supported in their relationships.

Assumptions and stereotypes around sex and sexuality

Another major hurdle in discussing sex and intimacy in a hospice environment is harmful stereotypes. For example, a literature review by Charlotte Benoot from the University of Antwerp found that age stereotypes often lead healthcare professionals to assume older adults have no interest in sex, preventing meaningful conversations about their needs.

Brian Nyatanga, writing in the British Journal of Community Nursing, emphasises this. “The challenge for all of us is attitudes that do not shift; hence, stereotypes are still prevalent.”

Such views also extended to assumptions around patients’ sexuality.

For example, a study by Amanda Hordern and Annette Street found that health professionals “made many unchecked assumptions about patient sexuality based on the patient’s age, diagnosis, culture, partnership, and disease status.” (Assumptions which can have a particularly damaging impact on groups like the LGBTQIA+ community, for whom, explain Bristowe et al in Palliative Medicine, “experiences of discrimination and exclusion in healthcare persist.”

These stereotypes may also, as ellenor’s apprentice occupational therapist Shania Allsopp explains, relate to disability. Shania shares the story of a woman with Down’s Syndrome who faced lifelong stereotypes about her ability to get married, have sex, or start a family. Yet, the woman has defied all of this, living a normal life and now trying for a baby with her husband.

“Hearing that story made me realise that, despite how ahead of the game ellenor is in terms of palliative and end-of-life care we provide, we’re still so short when it comes to having conversations with patients around sex and intimacy – and that’s because people just don’t want to talk about it.”

To combat this, Shania has been networking with key organisations, such as Enhance the UK – a charity built to challenge these damaging preconceptions about people with disabilities. Attending their events and learning from their campaigns, such as "Undressing Disability," has equipped ellenor with strategies to better support patients in this area.

“Having a disability can be a very isolating experience. As well as physical barriers, there is still such a huge amount of prejudice towards disability amongst the general public. People often hold the misguided notion that disabled people can’t, don’t, or won’t have sex. There is a stigma that, unfortunately, is often internalised by disabled people who often suffer with self esteem problems as a result.”

How can ellenor overcome these prejudices? Prioritising the patient is a good place to start.

Putting the patient at the heart of the conversation

Breaking down these barriers starts with putting the patient’s needs at the centre of the conversation. Whether stereotypes are based on age, disability, or sexuality, they all prevent patients from receiving holistic, person-centred care.

“Patients may have a life-limiting illness,” says Charlotte, “but they’re still human beings, deserving of love, connection, and intimacy. Our job is to make sure we are supporting them in living fully, in every sense of the word."

ellenor has already taken steps to better accommodate patients' needs related to sex and intimacy in a hospice setting. Whilst there are beds called “cuddle beds” available,  the cost of these at £14,000 is prohibitive for charities so ellenor adapts by putting beds together to allow for intimacy. Despite this supportive inpatient move, as ellenor’s apprentice occupational therapist Shania Allsopp explains, there is much more to be done.

“We’re happy to talk about facilitating those intimate moments,” she explains, “– but when we get into the territory of, say, opening condom packets for a patient, or talking about masturbation, we often struggle. But if these patients are asking for our advice in those areas, we need to support them.”

This article is the second in a three-part series exploring the concepts of sex and intimacy in a hospice care setting. Part One focussed on the connection between sex, intimacy and Dame Cicely Saunders' ‘Total Pain’ model. Part Three will look at how collaboration, creativity, and open communication can help break down barriers and overcome taboos related to sex and intimacy for patients with life-limiting illnesses and their caregivers.