Just because you're slowly dying of a terminal illness doesn't mean you're not thinking about sex.
It's well-documented that old people can have active, flourishing sex lives. At least a third of people between the ages of 75 and 85 are getting it on, according to a survey in the New England Journal of Medicine. But how does your sex life change when you introduce the idea of dying—and when you know that death might be right around the corner?
There is remarkably little scientific research into the subject of sexuality at the end of peoples' lives. But the research that does exist suggests sex remains important to those who are dying. Take this 2011 study, published in the Journal of Hospice and Palliative Medicine, which asked 65 patients with advanced cancer how their attitudes toward and experiences of sex changed as their disease progressed. While most patients reported significant decreases in sexual satisfaction and frequency, 60 percent of patients didn't consider themselves less attractive after the disease. The majority—86.4 percent—said it was important to talk about sexuality with a medical professional.
As life expectancy increases, more and more patients will grapple with questions of sexuality and intimacy near the end of their lives. Dr. Sharon Bober is one of the people who tries to answer those questions. Bober is director of the Sexual Health Program at the Dana-Farber Cancer Institute, the main teaching affiliate of Harvard Medical School. Cancer treatments can have myriad effects on a person's sex life: lack of libido, lack of privacy, pain, and a changed sense of identity. Bober's program aims to provide "education, consultation, and personalized rehabilitation counseling for patients and their partners who have experienced changes in sexual health during and after cancer treatment." In other words, even terminal cancer doesn't have to stop you from getting laid.
I reached out to Dr. Bober to find out more about the challenges relating to sexuality among people who are terminally ill, and the importance of helping people manage a healthy sex life—even if their lives are coming to an end.
VICE: Why is end of life sex becoming a bigger deal?
Dr. Sharon Bober: More and more people live longer with life-limiting diseases. The kinds of things that would have been quickly fatal not long ago are often times conditions or diseases that people [now] live with for longer. For example, people are living with advanced-age cancer or severe respiratory disease in a more chronic way. It's not forever—because people are still dying—but they are living [with them] for years. The idea that you might be fatigued, you might not feel great, you may not have a lot of energy, you might be weak... but you're not dead.
And if you're not dead, you might still want to have sex. How does terminal illness affect someone's sex life?
The general physical symptoms that have an impact on sex are on the short list of problems: fatigue, nausea, pain, potentially erectile dysfunction, vaginal dryness. Men who have advanced prostate cancer are able to live several years with that situation. There are hormonal therapies that are more and more effective in helping them live with this disease for three, four, five years. In that particular situation, guys often have significant changes because of the hormonal component where they have no testosterone. Often, men have profound erectile dysfunction and feel very neutered in certain ways and don't feel sexual in the way that they used to. It will have a real impact on vitality and experience of masculinity.
What about people undergoing treatment?
If you shared a bed with your partner for 40 years, and now for the last couple of months of your life you're in a hospital bed in your living room, you can bet that you're thinking about sex. It might not be in the context of I wish I could have sex, but more of all the things that you're losing, of all the things that are changing. The fact that that doesn't get acknowledged in an explicit sort of way for a lot of people is a real source of suffering.
Another example is people might have questions about sex because maybe now they have symptoms like erectile dysfunction or vaginal dryness and they'd like to be able to ask the doctor a question about that and all of a sudden they realize that they are never alone with the doctor without one of their adult kids coming with them. That's a conversation that you'd love to ask your nurse about, but you're actually never alone.
It also seems like clinical settings might make it awkward to talk about sex.
In the hospital or [in] hospice, you are literally never in a situation where you can have privacy. Staff are coming in and out of a room and you would like to have sex at least one more time and you wish your partner could get in bed with you—but you're afraid someone's going to barge in and you're not sure how to talk about that.
So, is it possible to get that kind of privacy?
Sure. I think that in a hospital setting or in a hospice setting, it's actually OK to say to the doctor or nurse, "We would like to be able to have some privacy." Is there a way to put a sign on the door that says "Do not enter between 5 and 6 PM" and make sure that the staff respect that? It's OK to ask that.
I was giving a talk with a bunch of palliative care doctors around sexuality and end of life. We were discussing how there are all sorts of things that we do in in-patient hospice care to make sure that people are comfortable—things like giving people permission to bring in animals and therapy dogs. And yet, we don't talk about, "Would you like to have some time with your partner alone?" Somehow [when it's] sex, we don't talk about it. That really shouldn't be any different than anything else that's on our minds to make people more comfortable when they are in hospice care.
"[If you're spending] the last couple of months of your life in a hospital bed in your living room, you can bet that you're thinking about sex." — Dr. Sharon Bober
So it's more a matter of fostering a dialogue and offering a more understanding environment.
Yes, and I do think that from a quality of life point of view, many times the goal is not to be able to change the mechanics. You might not be able to make somebody physically feel well enough to be able to have sex again—but that's not necessarily what's needed. Some people would just like to be able to express to a partner what it means that they feel sad that they'll never be in the same bed again. Or to say to a partner, "Even though we can't be in the same bed again, it be really great to be able to be naked and hold each other."
What about patients who are physically well, but not mentally—like patients with dementia?
That's complicated because there are many different types of dementia. Certainly, I think there's been a fair amount written about people with Alzheimer's in nursing homes partnering up with new people and [not having] a real memory of [their current partner]. I think we're just beginning to learn more about what that means for people to live a long time with profound cognitive changes.
Sometimes people literally feel disinhibited and that's sometimes part of the cognitive changes. People are all of a sudden more sexual. For example, Zeke Emanuel has written about the fact that STIs are on the rise in nursing homes because people who are older are still very much sexually active but are not necessarily doing it in a safe way. I think it's a real question about what do you do when people are sexually active but not cognitively intact. There's also real questions around consent. I don't think there are easy answers, but I definitely think as a culture, we need to be talking about it. Because we are only going to see more of this. It's not going in the other direction as people are living longer but in ways in which they are really altered—they are not the same person that they used to be.
What is the biggest misconception around sexuality at the end of life?
That it's not on people's minds. The biggest misconception is that people who are really sick and living with life-limiting illness or end of life are not sexual beings and that they are no longer distressed by the loss of sexuality. That's not true. Being able to allow people space to talk about it or to feel connected [is important]. You may no longer be able to have sex with your partner, but you still feel like you are someone's partner. Your relationship as a lover, as a partner is not the same as a daughter, or grandmother, or aunt.
When you think of it in terms of someone's identity of one's self, it's different. Figuring out how to still have that sense of connection with yourself, with one's partner. Even as you're saying goodbye, that's important. And the fact that we don't allow that, or many people don't feel like that's something they can talk about is a shame. We live in a culture that's just saturated with sex but actually has very little to do with real sexuality. This is real stuff that people need to be able talk about and figure out.
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