Why are we still afraid of talking about sex at the end of life?

Whatever your age or sexual orientation, terminal illness can have a big impact on your intimate relationships. I learn about the devastating consequences of not talking about sex at the end of life.

Illustration: Genevieve Lowles

When Barry was diagnosed with bowel cancer in 2005, sex wasn’t the first thing on his mind.

Things happened so quickly, it was overwhelming. The diagnosis, the disease. His partner Jonathan recalls the barrage of information they were overloaded with in a short window of time, before they’d had chance to get their heads around that one monumental fact.

They struggled to assimilate everything. They didn’t know what questions to ask, because — well, who could in that situation?

Barry died in August 2015. They’d been together for 34 years. They had met at a concert, exchanged numbers and never looked back. Sex, like for so many couples, played an important part in their life together. “Life was extremes. We were either fighting like cats and dogs or absolutely in love. There was little grey,” says Jonathan. “For all those years.”

The first operation had been relatively successful. But in 2010, the cancer came back and Barry had to undergo surgery that was more invasive.

Consultants focused on the removal of the tumour. They didn’t discuss potential side-effects. Jonathan says they didn’t really talk through psychological implications or effects on their lives together. During the operation, there were complications. A nerve was nicked. It’s a known risk. The resulting erectile dysfunction had a huge effect on their sex life.

“It destroyed him really. I mean, you know, as a bloke. It’s central to our sexuality. It felt cruel. Cruel to get the cancer, then to have to cope with the effects of the treatment. To not be able to have sex — it changed our landscape,” says Jonathan.

He remains frustrated by the lack of information they were given, and the lack of thought that had been given to potential consequences for their relationship together.

As Jonathan increasingly took on the role of carer towards the end, their relationship inevitably changed. But they were still able to enjoy moments of love and intimacy.

“I don’t think it ever changed my love for him. Or him for me,” says Jonathan.

Sex and intimacy, for many of us, play a big a part in our lives: in being content and happy. That’s true throughout life not just when people are well. Terminal illness shouldn’t have to mean the death of your sex life.

Part of life — and death

If sex is important before a diagnosis, why assume that it wouldn’t be when someone is ill? In fact, it’s increasingly being seen as central to measures of quality of life.

That’s not to suggest that there aren’t sometimes huge barriers to sex and intimacy when someone is dying — whether physical, psychological or side-effects of procedures or treatments.

Illustration: Genevieve Lowles

It’s certainly, a difficult subject for people to broach — whether they’re patients, their partners or healthcare professionals. But it’s an issue that, as Jonathan’s case makes clear, many patients really do want to talk about.

No wonder. Your sense of sexuality can define who you are. It can define some of the most important relationships of your life. And it’s a fundamental part of your self-expression, of how you express your love for others and them for you.

Yet there’s a surprising lack of research on the subject. Does that reflect a lack of prioritisation by health professionals generally? And is there still a taboo around sex at the end of life?

Physical changes

“Sex and sexuality are massive issues for palliative care patients,” says Dr Adrian Tookman, Medical Director at the Marie Curie Hospice, Hampstead.

Fatigue, tiredness, nausea — they’re just some of the physical effects that can affect a person’s sex drive at the end of life. Being chronically unwell suppresses your testosterone levels, depressing your libido — meaning you lose interest in sex. The same is true for men and women. Many treatments have the same effect too.

Then there are, as Dr Tookman describes them, ‘mechanical’ causes of sexual dysfunction: basically, damage to nerves that can lead to erectile dysfunction or anorgasmia (a type of sexual dysfunction associated with difficulties achieving orgasm). Chemotherapy, surgery, antidepressants and lots of other drugs can all produce these side effects.

But after years of sharing intimate moments with someone you care about, that doesn’t mean it becomes less important. It’s still something on people’s minds.

Adrian routinely checks patients’ hormone levels for that reason (it’s not standard practice). This is part of a holistic approach to care and helping people have a good quality of life at the end of life. Hormone treatments and drugs like Viagra can then sometimes be prescribed to manage some of these effects.

The implications of not addressing these side effects can be devastating. He tells the story of a female patient who was experiencing a lot of pain during intercourse.

He prescribed analgesics, which provide pain relief, to help her. “But she left the clinic crying. She said she wished she’d known about the treatment sooner — she said it had caused problems in her relationship. Her marriage had since ended,” says Dr Tookman.

He emphasises that talking people through possible side-effects is crucial. Without that information, patients can blame themselves. “A drug like tamoxifen, which is used to treat breast cancer, can lead to anorgasmia,” he explains. “When I explain that, it helps people understand the changes are nothing to do with them personally and that it’s not because of their relationship”.

Breaking the taboo

Dr Bridget Taylor’s career has been varied to say the least.

Currently a Community Specialist Palliative Care Nurse, she’s also a Senior Lecturer in sexuality at Oxford Brookes University. She was a district nurse in the 80s, caring for patients at a time when the medical profession was gripped by fear as the HIV/AIDS crisis hit.

She recalls stories that have inspired her research with a calm and soothing manner that belies their sometimes distressing nature. She is, you get the impression, unflappable. That’s got to help with conversations about sex and intimacy at the end of life hasn’t it?

“Well, I certainly found it quite difficult to have those conversations when I first started out. But it becomes much easier the more you do it,” says Bridget.

She says that it’s important to give patients and their partners the permission to talk openly about their sex lives — or not. There’s clearly a danger of forcing people to talk about their relationship when they may not be ready or willing to. Like forcing people into conversations about death, it can be psychologically and emotionally counterproductive.

The experts I spoke to agreed that there’s a tendency to avoid difficult conversations about sex, and instead focus on practical ‘medical’ questions like: ‘is the patient in any pain?’

Illustration: Genevieve Lowles

The reticence is perhaps understandable. Pain is something healthcare professionals can generally do something about. When someone’s sex life is affected by their condition or its treatment, it can be much harder to figure out what help you can offer.

Sex is not an easy subject to talk about at the best of times, so it’s unsurprising that even professionals can feel embarrassed or unsure how to broach the subject. There’s often a fear of causing offence.

As a result, patients are often left to bring up their concerns. “Professionals frequently believe that if the patient is worried about it, then they’ll bring it up“, says Bridget. “But if we don’t show it’s an appropriate topic of conversation, then patients are likely to avoid it. Research consistently backs that up — across a wide range of conditions.”

Unprompted, patients might find it difficult to discuss intimate details about their sexual relationship(s). First, they may see it as taboo. But they may also have a legitimate fear that they won’t be taken seriously: that these will be seen as trivial concerns compared with the towering seriousness of dying.

In Bridget’s experience, this means patients sometimes raise issues in a jokey way — and this cue can easily be missed by doctors and nurses.

In fact, research suggests some patients living with terminal illness really do want to talk about sex. But like Jonathan, they often regret it hasn’t been brought up earlier.

It can mean that people living with a terminal illness don’t get the medical and psychological support that might help them maintain a level of sexual fulfilment.

There can be long-lasting implications for their partners. “Not talking about sex and intimacy can be a helpful strategy for some couples. However, this can sometimes leave difficult things for people to deal with in bereavement,” says Bridget.

What are the psychological barriers?

Ugly. Worthless. Unattractive. Terminal illness can make you feel all of these things. And that’s true with range of conditions — from Motor Neurone Disease to breast cancer.

“People can feel that they’re no longer the person their partner married and that they’re letting them down,” says Bridget.

It’s a feeling discussed in an excellent blog post by breast surgeon Dr Liz O’Riordan, who is living with breast cancer (read it here).

“[My husband] now has a wife with a numb, often painful fake breast, with a brillo pad for hair, who throws the covers off in the night dripping in sweat,” Dr O’Riordan writes. “The thought of 10 years in a relationship with little intimacy…is not a good one.”

She talks about how important discussing the issue has been — with healthcare professionals, but also other patients on Twitter — in coming to terms with her ‘new normal’.

The psychological impact can be immense, although organisations like Look Good, Feel Better provide free support to help build people’s confidence.

Communication between partners is also vital, says Bridget. “I believe, as healthcare professionals, we have a role in helping couples talk to each other. We can’t always fix things but we need to acknowledge changes and try to avoid them becoming barriers for the couple,” she says.

Without that communication, patients and their partners can start to disconnect as their lives diverge. The loss of independence and ‘becoming a patient’ can be felt keenly by those living with a terminal illness — which can diminish people’s self-worth.

And the change of roles can have a big impact on relationship dynamics. The carer can end up infantilising their partner — no longer seeing them in a sexual way. “The relationship became one of somebody who was ill, and their carer,” Jonathan told me about his relationship with Barry. “From then on, we ceased to be equal partners.”

This is by no means a universal carer experience. But it does highlight the fact that healthcare professionals should help initiate conversations that let couples explore these issues openly, if they feel comfortable doing so.

Illustration: Genevieve Lowles

Watching the sun go down

With terminal illness, physical and psychological changes can redefine your sex life — and your whole relationship. What you think of as ‘intimacy’ can change. Touch, and other ways of showing affection, often become more important to people.

Bridget tells the story of a young man she interviewed for her research who spoke of missing intimacy in his relationship with his partner.

“But then, towards the end of her life, they’d drive up to a hilltop with a flask and watch the sun going down. That became intimacy for them. You know, just looking into someone’s eyes is intimacy.”

Have you or someone close to you been affected by issues discussed in this article? Find more advice and support in the Marie Curie guide to sexuality and intimate relationships at the end of life.