Sex And Intimacy Part 1

A “Risky Business”? Exploring Sex and Intimacy in a Hospice Care Setting, and the Role of the Total Pain Model

“The practice of palliative care prides itself in facilitating complex and uncomfortable conversations around death and dying. One such conversation is sex and intimacy, which healthcare professionals accept as integral to each person’s identity. Yet, it remains one of the most difficult subjects to broach with patients, leading to an unfortunate neglect of one of the most important aspects of person-centred care.”

Brian Nyatanga, British Journal of Community Nursing

In the first of this three-part series on sex and intimacy in hospice care, our Clinical Nurse Specialist Charlotte Mead and Occupational Therapist Shania Allsopp offer insights from both literature and their own experiences to highlight this often-overlooked topic; they  

reveal how ellenor is leading the charge in ensuring these important conversations are no longer neglected.

Sex and intimacy: a risky business

Nyatanga points out, the topic of sex and intimacy is no exception, although it is often one of the hardest conversations to have in a clinical environment.

Amanda Hordern and Annette Street’s study in Contemporary Nurse describe these discussions as a “risky business.” Their research found that patient sexuality and intimacy were often reduced to medical issues like fertility and menopause, making it difficult to address the deeply personal aspects of intimacy in a clinical setting.

Clinical Nurse Specialist Charlotte Mead agrees.

“We, as clinicians, are absolutely terrible at assessing this. We don’t ask questions or feel confident to ask questions. A lot of us feel awkward and frightened that we’re going to step over the line. We’re good at having what we deem ‘difficult’ conversations – such as DNR or cessation of treatment – but we’re not good about delving into things that are really, inherently personal, like sex and intimacy.”

But why – and should a patient’s sex and intimacy even fall under the remit of their healthcare professionals? The literature and Charlotte agree that it should – and it comes down to something called the Total Pain model.

Total pain, and the social side of sex

Our approach is grounded in the Total Pain model, first introduced by Dame Cicely Saunders, which highlights how patients with life limiting illnesses experience suffering across four interconnected areas: psychological, social, spiritual, and physical. Sex and intimacy touch on all of these areas, making it essential for palliative care professionals to engage in these conversations.

“We can’t get away from the fact that sex is, by its very nature, social,” says Charlotte. “It involves a relationship with another person, or persons. If we’re not dealing with the concepts, the distress – the trauma – around sex and intimacy, and how someone’s life can be turned upside down with a palliative care diagnosis, we’re not actually dealing with their pain.”

Creating intimacy in a hospice environment

For Charlotte, fostering a sense of intimacy is crucial to supporting patients’ relationships. But clinical settings often lack the relaxed and private atmosphere needed for emotional and physical closeness. Charlotte suggests small changes, like offering a double bed, can make a significant difference in preserving this sense of connection.

“When people enter a clinical environment like a hospice – perhaps because their condition is deteriorating – they’re usually given a single bed. Now, sex may not necessarily be on the cards, but if we’re looking at intimacy – we’ve just removed a person from their marriage bed. Meaning that intimacy, that simple warmth and comfort of lying next to their husband or wife, is gone.”

This emphasis on privacy and intimacy is something we are committed to providing for its patients, as they work to support all aspects of their well-being.

Are we ready? And if not, how can we be ready?

Apprentice Occupational Therapist Shania Allsopp highlights that a life limiting illness can cause patients to lose their sense of self particularly in relation to their role and identity within the family.

“Many male patients, for example, talk about losing their role and identity. They might have been the patriarch of the family; they’re used to looking after everyone. Now, suddenly, they’re unwell, and we as clinicians often struggle with that.”

“That’s why,” Shania says, “we’re working to have open conversations with patients about these issues. We want to ensure they feel heard and supported during this challenging time.”

This article is the first in a three-part series on sex and intimacy in hospice care. Part Two will address age and sexuality-related stereotypes, while Part Three will explore how collaboration and open communication can break down taboos surrounding these topics for patients with life-limiting illnesses and their caregivers.