Conversations about sex and death are hindered by cultural taboos and structural limitations in our healthcare system and our broader society. Sharing stories can help break down these taboos and generate support for institutional change. This article uses stories about the sexuality and terminal illness of the author’s mother to illustrate harm caused when opportunities to discuss sex and death are missed.
conversations, cultural taboos, structural limitations, sexuality, death
We in the United States are not good at talking about two things when dealing with older people or people who are living with serious illness, and they are two of the most universal, yet deeply individual experiences humans have: sex and death. Most humans will have sex, and all will die, but the kinds of sex and kinds of deaths we will experience vary tremendously. For this reason, sharing information about both is essential to protecting the quality of our lives as we age.
Despite this truth, the U.S. healthcare system is ill-equipped to help us share such information. Doctors are not well trained in sexuality and often are taught to see death as a failure. Nurses often are overloaded with more patients than is reasonable if we would like them to take time to talk about difficult subjects with those in their care, and they aren’t trained to have these conversations, either.
The physical structure of our hospitals and rehab facilities often denies us the privacy we need to experience sex or intimacy. And if we are cared for at home by our families or other loved ones, the cultural taboos around these subjects make it nearly impossible for us to navigate in that setting, too.
There is no doubt a need for a systematic study to guide the structural and cultural changes that must be made if our healthcare system is going to support our fundamental human right to sexual freedom as we age. But while research can tell us what we need to do, data won’t generally inspire us to do it. For that, we need more stories than spreadsheets. So let me start with a story.
Terminal Diagnosis Doesn’t Necessarily Dim Interest in Sex
My mother was a 67-year-old White woman with a terminal cancer diagnosis. She had just finished her fourth round of chemo. She sat, small and frail but in good spirits, tucked into an armchair in the hospital room. I, attentive and concerned, sat perched on the edge of the bed so that the palliative care pharmacist could use the only other chair in the room. The pharmacist, Tara (not her real name), was a young vibrant woman whose dogged persistence in tracking down and treating the causes of my mother’s pain never ceased to impress me. On this day she had stopped in to discuss pain-relief strategies my mom could use outside of the hospital, when between chemo admissions.
The non-pharmaceutical suggestions included everything from massage to Reiki to a TENS unit. My mother asked what a TENS unit was, which surprised me. I knew she knew what a TENS unit was. Tara explained that TENS stood for Transcutaneous Electrical Nerve Stimulation and started to describe the machine. A smile of recognition spread across my mother’s face. “I have one of those at home, but I’ve never used it on myself, and I don’t think it has those kinds of pads you were describing.” The pharmacist smiled and nodded and then moved on to the pharmaceutical options that could be used at home. I struggled to decide whether I should jump in, and ultimately decided to keep my thoughts to myself.
‘Had any one of us spoken up in that moment we could have explored whether and how sexual activity might fit into my mother's treatment plan.’
My mother owned a TENS unit because a lover of hers had given it to her for use in a bondage and domination scene. My mother was the dominant and her partner was the submissive, and this partner particularly enjoyed the shocks produced by the TENS unit. For sexual purposes, TENS units come with attachments like nipple clamps and butt plugs, and those were the ones with which my mother was familiar. Her experience with this was purely as a sex toy, never as a medical device.
A significant opportunity was missed in that hospital room. It was an opportunity that could have enhanced my mother’s quality of life, and each of us, my mother, the palliative care nurse, and myself, were complicit in letting it pass. Had any one of us spoken up in that moment we could have explored whether and how sexual activity might fit into my mother's treatment plan.
Physical contact, affection, and sexual interaction can all be useful tools to improve how a person feels. Sexual expression isn't a panacea, and we need more research to extend its utility, but we know healthcare professionals could be exploring these engagements with patients to assess if they might be useful in each person’s care.
The majority of healthcare workers are uncomfortable talking about sex, and at no point during my mother’s treatment did a doctor, nurse, pharmacist, aide, or social worker ask her about her sexuality or her sexual history. Because my mother was 66 when she began her treatment, it is likely that no one even considered the possibility that she was sexually active, even though she had a boyfriend who spent every weekend with her at the hospital.
That explains the healthcare professionals, but what explains my decision not to speak up? I thought about it. My mother was quite open about her sexuality. If you read Bound: A Daughter, A Domme, and an End-of-Life Story (She Writes Press, 2019), you’ll see quickly that the title is ironic given my mother’s lack of boundaries, so it wasn’t out of concern for my mother’s modesty or fear that she’d feel ashamed that I let the moment pass. I let it pass because I knew my mother was concerned that if healthcare workers were aware she was kinky they might treat her poorly. In addition to the stigma around being older and sexual, there is added stigma around being kinky. So, I followed her lead by not speaking.
This is another place where more research would be useful. We know that open communication is an important tool for maximizing sexual health and pleasure, but our knowledge about that communication tends to be based on studies of partners and peers or on curricular models that guide teacher-student conversations or parent-child conversations. What do we know about the conversations that older adults are worried about having with their adult children or other caregivers?
What do we know about the best ways for older or sicker adults to discuss sexual concerns with their caregivers? Systematic study would help us best understand the needs of older folks and their families when it comes to supporting sexuality. With or without that research, though, we need to learn from stories shared by those who think, speak, and write publicly about these things. And we need to encourage the sharing of more stories. The more we erode the taboos around these subjects, the better able we will be to live our fullest lives and to support others in doing the same.
Understanding of Patient’s Sexual Lives Would Improve Care
A desire on the part of healthcare workers to understand my mother’s sexual desires and experiences would have helped improve her care in a number of ways. For one, it would have helped them understand her motivations for treating a terminal cancer she had little hope of beating for long. She wanted more time with her daughters and her grandchildren, of course, but she also wanted to return to her lovers.
She wanted to regain enough strength to wield a flogger, enough mental acuity to create an exciting scene, and enough stamina to play it out. The field of narrative medicine urges healthcare providers to see their patients’ stories in their entirety. Narrative medicine is a relatively new specialty in the United States, and there are only a few places where one can receive such training, but the idea is an old one that would certainly be familiar to a lot of family practitioners from decades ago. At its heart, narrative medicine reminds us that a patient’s story helps to reveal their motivations, interests, and histories in ways that support the provision of truly comprehensive and appropriately focused care.
In my mother’s case, as in most, this would have required honest conversations about her mortality and the course of her illness. My mother was not intrinsically interested in discussing death. Many of us aren’t. At the beginning of her illness, my mother’s oncologist explained that the cancer could not be cured, so it was a terminal illness, but that with treatment, hopefully, she could have “a couple more years with a good quality of life.”
Later, after a sixth and final round of chemo and several life-threatening infections, when treatment was over and my mother was not improving, the same oncologist said that she should look at the next six months “as if she’d been laid off,” and needed to decide how she wanted to spend her time. This was not a helpful way to think about end-of-life priorities. What my mother wanted to do with her time was go home and enjoy hot bondage and discipline scenes with her lovers. Her treatment had not made that a likely outcome.
‘What do we know about the best ways for older or sicker adults to discuss sexual concerns with their caregivers?’
As it was, my mother never went home. She lived for eight months after her initial diagnosis and all but the first few weeks of that time were spent in hospitals and rehab facilities. Her time there taught me additional lessons about the ways that the structure of healthcare—not just the culture of healthcare—inhibits the acknowledgment that we are sexual creatures even when we are sick or older.
One of the first things I learned when the social worker on her oncology floor gave me a list of rehab facilities to check out was that patients generally had semi-private rooms. This was a huge change from the private room she always had on the oncology floor at the university hospital where she was being treated. At the hospital, Kenny, the lover who spent almost every weekend by her side, was welcome to spend the night. The room was outfitted with a chair that folded into a flat bed. Nurses and aides were happy to have the extra help in the room. My mother was happier with company, and especially with the cuddling she could enjoy with Kenny. Perhaps they enjoyed other kinds of affection too, sometimes.
But at a typical rehab facility there would be nothing but a thin curtain separating her from a roommate most of the time. As a result, most facilities had policies barring overnight guests. She would not only be giving up privacy but also sustained affection and contact. Providing private rooms is expensive, of course, and Medicare and Medicaid do not pay high rates for rehab or long-term care. But hospitals increasingly recognize the health benefits of private rooms, and it wouldn’t surprise me at all if a long-term study demonstrated that the money saved on treatment and readmission outweighed the cost of giving each patient privacy and dignity.
Every nurse, doctor, aide, or administrator I encountered on my mother’s cancer journey would certainly have said that privacy and dignity were bedrock principles of providing care, and yet the way we fund healthcare makes those things hard to obtain. The structure of healthcare also impinges on another bedrock principle: informed consent. Rarely was informed consent ever obtained. Not only does the culture of medicine encourage doctors to see patients as clusters of symptoms to be treated rather than as complicated people to be cared for, but also, brutal patient loads make care delivery a rushed endeavor.
One afternoon, well before the conversation about the TENS unit, my mother was sleeping after a particularly rough night and morning. She was struggling with C. difficile infection and shingles. When she was awake, she was agitated and in pain. The few hours of sleep she was getting on this particular afternoon felt to me, as I sat and watched over her, like a gift.
As she slept, an older White male attending physician from the Infectious Disease team came into the room with his resident and a medical student. I gestured that my mother was sleeping. They nodded sympathetically. Then the attending physician gently pulled aside my mother’s hospital gown to show the resident and the student the rash that spread across her chest. He even lifted her breast to look at the remaining blisters. When it looked like they were about to roll her over to look at the rash on her back, I snapped, “Don’t!”
I was appalled that they would touch the breasts of a sleeping woman but even more furious that they might risk waking her up. In that moment I could see how quickly consent gets set aside in favor of expediency. Fixing this will require researching the cultural and structural barriers to meaningful consent and then reorienting our healthcare institutions so that consent is a priority.
Aging does not erase sexuality, and neither does illness. To the degree that an illness or a symptom of advanced age interferes with our ability to experience pleasure in the ways that we enjoy, we should be able to count on our healthcare system to address our concerns. We deserve lives that can be lived fully in the face of our mortality. We need honest conversations about sex and death to meet these basic human needs.
Elizabeth Anne Wood, PhD, is a professor of Sociology and acting dean of Instruction at SUNY Nassau Community College in Garden City, NY. She may be contacted at firstname.lastname@example.org.
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