Sexuality is a common casualty of the way we provide palliative care in North America. We live in a culture that generally considers sex (when it’s not for procreation) to be a luxury or privilege of youth. The very idea of having sex at the end of our lives, or being sexual while receiving palliative care can seem like an oxymoron, or even disgusting to some people.
But I suspect that if you talk to someone who is dying, or someone who has a partner or spouse receiving palliative care, you’ll hear a different story. I was curious if this was true, and for answers I turned to an article about sex and palliative care from UpToDate, an electronic reference used by many physicians and patients looking for in-depth medical information. Here’s what they report:
"Despite the high incidence of sexual dysfunction and the clear importance of these issues to patients and their partners, only a minority of patients enrolled in palliative care programs (1 in 10 in one study) report ever being asked about concerns related to sexuality. In contrast, the vast majority of those questioned feel this is a subject that should be addressed by their clinicians. In fact, many patients and their sexual partners welcome the opportunity to discuss the impact of illness on their sexuality."
The fact that people are interested in sex should be reason enough to support them, but if you’re still on the fence about the “appropriateness” of being sexual in a palliative care setting, consider these reasons why sex is an appropriate topic and activity for people receiving palliative care:
- Sex can reduce negative side effects of illness, disease, and medical treatments (e.g. sex can reduce pain, help with sleep, bolster physical energy levels)
- Good sex contributes to an overall improvement in quality of life (e.g. lifts spirits, offers a distraction, makes you feel good, loved, appreciated)
- Sex can reduce isolation by offering a moment of intense connection with another or even with oneself
- Regardless of how we do it, being sexual is part of being human, and when we ignore this we are denying part of ourselves.
Barriers to Sex in Palliative Care
Fear and ignorance are two of the biggest obstacles to being sexual or talking about sex if you or your partner is receiving palliative care. Fear of sex making someone feel worse, fear of someone dying during sex, or fear of the feelings that might surface in such an intimate moment. Most of the ignorance has to do with a lack of information, but in most cases, answers are available if you are persistent in asking for help.
There can be major physical and/or psychological changes as a result of a terminal disease or illness. Pain, fatigue, reduced mobility and sensitivity, depression, an altered sense of your body image and self-image, the list goes on. Each of these can present a stumbling block of you’re used to sex being a certain way and now need to change to accommodate your new situation.
Treatments you may be receiving as part of palliative care or management of your illness can also have huge impacts on how you feel sexually. Your health care professionals are focused more on managing your health and probably minimizing your pain.
If you want to focus on feeling good or being sexual that’s your right. If treatment you’re receiving is getting in the way of you being able to be sexual, talk about treatment options. Know that the decision is yours and a professional’s job is not to influence you but to provide you with as much information they can in a way that you can understand it.
Our expectations of what sex is, or what it should be, can have a huge impact on how we approach being sexual. If you think that the way you had sex five years ago is the only way to do it, you’ll likely be frustrated by sex now. Or if you imagine that sex at the end of life is going to be like it is in the movies, you may also be disappointed. You can’t help but have expectations, but try and remember that sexuality is completely individual, subjective, and unique in a given situation. If you want to be sexual now, the way that will look won’t be exactly like anything else you’ve experienced before, because you’ve never been here before.
Get the answers you need. Health care professionals may not bring up sex, so if you’ve got questions and concerns, you may have to raise them. You may also want to seek out support from a sexuality professional. You have a right to whatever information or support is available, so even though it’s hard remember that it’s part of their job and you’re doing nothing wrong by asking.
If you or your partner is receiving palliative care here are some suggestions and tips for making space for sex and sexuality.
If you’re thinking about it, talk about it.
One or both of you may be thinking about sex but afraid to bring it up. You might think that asking for sex is a burden the other shouldn’t have to bare. You might think that it’s the last thing your partner wants to think about. Try to talk about sex in a way that doesn’t make your partner feel pressured, but instead focuses on your feelings. After all, wanting to connect sexually is a very positive desire, and even if your partner doesn’t want it, most of us are happy to be reminded that we’re attractive and lusted after by our partners.
If you’re not thinking about it, try.
Sex may be the last thing on your mind and the last thing you want to do, which is fine. What isn’t fine is if you’re ignoring your sexual needs so much that you’re not even letting yourself think about it. Without making it a big deal, take just a little time to think about sex. How you’ve felt about it in the past and how you feel about it now that you’re nearing the end of a sexual life and possibly the end of a sexual relationship. Is there anything about sex that you do want to share at this time? You don’t need to belabor the point or feel pressure to want sex, but since sex tends to be a taboo topic, it’s worth checking in at least once with yourself.
Starting the conversation.
Talk about your sexual fears and your desires. It can be hard to put something out there that you feel could be interpreted as a regret or anger or pressure, but if both of you agree that it’s OK to say what you want even if you can’t get it, then both of you get to speak your minds and hearts without censoring yourself.
If you don’t have a lot of information about sex and palliative care you probably have questions. Make a list together and see if there are any questions you can help each other answer. Share stories about sexual things you did together in the past that you liked, or embarrassing times that you wished you could forget. Sex is more than intercourse, think about sexuality as all the things you do to make each other and yourselves feel desired, loved, attractive, intimate, and connected.
Use fantasy. Dealing with end of life issues can root you in a particular kind of reality, one where you are aware of your mortality at all times. Any kind of fantasy or daydream can be a welcome relief from what’s happening in you and to you. It can be a way to pass the time or to distract you from pain or boredom. Allowing yourself to sexually fantasize can help with creative thinking about how to be sexual if you’re body isn’t working the way it used to.
Think creatively. Sex is more than intercourse, and regardless of your situation there will be a way for you to be sexual (alone and with a partner). Focus on what you want to feel, not what you expect it to be like or what you’ve seen in movies. Ask for help if you’re stuck.