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Sex and Palliative Care

How to Talk to your Doctor About Sex in a Palliative Care Setting

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Talking with your doctor about sex can be intimidating at the best of times. But what is it like when you are dealing with end of life issues in a palliative care setting and you have questions about sex? Over the years, I’ve received a handful of requests from people whose sexual partners were receiving palliative care for a terminal illness. Some people are struggling because their partner doesn’t want to have sex anymore; others have 'turned off' themselves and don’t know where to start a conversation about sex. All of them said that they wish they could ask a professional but didn’t feel like they could.

I was curious about what the medical approach to sex and palliative care was, so I turned to UpToDate, an electronic reference used by many physicians and patients looking for in-depth medical information. From the beginning of the article, some of my suspicions were confirmed:

“The prevalence of sexual dysfunction in general internal medicine practices is estimated to be as high as 50 percent. At least one study suggests that palliative care patients report more sexual difficulties than general practice attendees. In one of the largest studies on sexuality in hospice patients, which examined 348 patients at 16 different hospices (55 percent with cancer), 63 percent reported problems with sexual interest or activity.”

According to the article, while the majority of people receiving palliative care wished their health care professionals would talk with them about sexuality, only 1 in 10 patients reported a professional raising the issue with them.

Why Don’t Palliative Care Physicians Talk About Sex?

Doctors may be the ones we look to for big answers, but to be fair, there’s an overall failure on the part of physicians, nurses, rehabilitation workers, and mental health professionals to deal with sexuality in a palliative care setting. Understanding the barriers can help us strategize how to talk about sex and palliative care with doctors and other health care professionals.

Lack of Sex Education and Training
Doctors receive the same basic sex education we all do, which is little to none. In medical school they get the anatomy but not much more, and rarely do they get trained on how to talk about sex. This means you can’t assume your doctor is either comfortable with the topic or knows much about it.

Assumptions About Sex
Without any training, doctors may make all sorts of assumptions about what sex means. They may think of sex as a luxury, not something you need to be bothered with as you’re dying. They may think that sex equals intercourse (not true). And if they think you can’t have intercourse, they may assume that sex is off the table.

Assumptions About Your Sexuality
In the West, sex is considered something only young, healthy, heterosexual people do. If you are sick, old, single or gay, your doctor may assume you are uninterested in sex or unable to have it. He or she may also assume that bringing it up with you would just be depressing.

They Forget That Sex Isn’t Just a Medical Issue
It’s understandable that doctors focus on the medical aspects of sexuality (reproduction, erectile function, etc.) -- that’s what they’re trained to do. But sex is so much more than plumbing, and they may get nervous about questions that are outside of their comfort zone.

Tips on Talking to Your Doctor About Sex and Palliative Care

Ask about the institution first: If you’re in a hospice or hospital setting, you can start by asking about what sorts of systems or procedures they have in place regarding sex and intimacy. Do they have rooms with locking doors for greater privacy (whether you want to be alone in private or with others)? Do they have any double beds? Making it about the institution rather than the individual may feel like a safer place to start a conversation about sex.

If there’s discomfort, acknowledge it: Saying something like “I feel a little uncomfortable asking this but...” may make it easier for you to ask your question. Also, it might let the doctor acknowledge his discomfort, which in turn may make him more comfortable.

Don’t limit your questions to your doctor: If you have questions or concerns about sex, ask your physiotherapist, other rehab workers and social workers.

Don’t give up after the first time: If you have a doctor who is really uncomfortable, she may brush off the topic the first time. You shouldn’t have to feel like you’re harassing, but because sex remains a topic that’s not talked about much, you may have to bring it up more than once.

Let them know you’re looking for resources and support more than answers: Questions about sex are rarely simple, and you’ll have to find an answer that fits your desires and needs. Doctors can feel like they’re on the spot to “fix” your sexual problem. Reassuring a professional that what you really want is information and support to make your own decisions can clarify the roles and boundaries for both of you.

Want to learn more? See UpToDate's topic "Sexuality in Palliative Care" for additional in-depth medical information.

Source:

Moynihan, Timothy J. “Sexuality in palliative care.” UpToDate. Accessed: September 2009.

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