Skip to main content

Who Wants to Talk about Sex?


Early in my career, I cared for a gentleman with advanced pancreatic cancer. The recurrence of his cancer was devastating, and I knew his decline would be rapid. Each week he came to my office to review his symptoms, and each week was the same- a little nausea, some increased pain and no appetite whatsoever. A few weeks before his death, he came to the clinic with his wife and asked for a prescription of Viagra. With all of his symptoms, I assumed sex would be the last thing on his mind. What he said next has never left me:

“There are few things in life I still enjoy. Making love to my wife is one of them, and I want to keep doing this as long as I possibly can.”

After this soul etching quote, one might think I would ask each dying patient about their sexual concerns- but I have not. Year after year I struggle with asking dying patients, “Are you sexually active?” Furthermore, if I ever get the courage to ask the darn question, what on earth am I to do with the answer?

As it turns out, reluctance in assessing dying patients' sexual concerns is common amongst health care providers. Horden and Street published an article describing the disconnect between the patient and/or spouse’s desire to be asked about sexual concerns and the health care provider’s reticence to bring up the topic.

Here are some themes identified during the study from providers who were interviewed:

  • It’s not life or death

  • I manage to avoid the topic

  • I can’t expose my vulnerability

  • It’s too risky

The bottom line is that most providers don’t think that the topic is very important at the end of life. If it was important, wouldn't the patient and/or spouse bring it up? Guess what- most are waiting for the provider to bring it up! Lemieux et al reported that one out of ten patients interviewed by their health professional in a palliative care hospital or home care setting had been asked about their sexuality, but ten out of ten felt a nurse or doctor should have brought it up.

The mismatch in patient desire to discuss sexuality versus clinician lack of appreciation of the importance needs to be addressed. It may be beneficial for clinicians to re-define what it means to be “sexually active.” As a dying patient's hopes and goals morph over time, so might the definition of sexuality. Is there a coital imperative that must be met to be sexually active? Or might sexuality have broader meaning?

Starting with a question like, “What does sexuality or intimacy mean to you?” may be an easier way to begin the conversation.

For more on this topic, click on the following links: sex and aging and sex and drugs (with or without rock and roll)


by: Tanya Stewart MD FAAHPM

Comments

Sara said…
How can a health care provider decide a patient's "quality of life" is not good enough to continue medical treatments if the provider doesn't know what the patient thinks is important? It seems there are many topics patients think doctors and nurses should bring up, not knowing that they have to ask the questions to get the conversations going.
Tanya,

Thank you so much for a great post with relevant literature review!

I definitely think this area of life, study and patient care holds many opportunities for growth and improvement for us.

At the upcoming AAHPM in Denver next week, I note that there will be exactly one break-out session that touches on sexuality along with some other complicated topics. It is listed under "humanities." Hopefully, in following years more than one session will be offered, and that these sessions will move out of the "humanities" curiosity shop and into clinical-care categories.

I have often wondered if, considering the demands of medical training, that perhaps there might be selection biases, which operate from the pre-med years, forward, and that perhaps lend preference to those who harbor reticences about any number of social processes. So that these peculiar reticences are carried forward into training and on into practice, where they become normative. One set of null hypotheses being, pre-med students, medical students, residents, fellows and attending physicians are as open to, interested in, and experienced about matters of sexuality and intimacy as their non-medical peers. If the alternative hypotheses are true, then we might have to engage in some personally challenging work to catch up with our patients.

Even if there is no difference between physicians and the rest of society on these matters, we still need to step up to the plate in order to develop the knowledge, skills and attitudes that enable us to competently and confidently provide the kind of care that is needed and wanted by our patients and their families.
I just saw that the single concurrent session at the AAHPM/HPNA, which touches on sexuality along with some other complicated topics, "Sex, Drugs, and Rockin’ Chairs: Palliative Care Assessment of the Taboo. Are We Doing Enough?," which is scheduled for Saturday morning is actually yours, Tanya!

Thank you!
Tom Perls MD said…
Along these lines, Ernest Borgnine apparently has the secret to living so well into his 90s: http://www.youtube.com/watch?v=3I_PeLNzxNQ
Sara: Thank you for your comments. Ideally doctors or nurses are guides to their patients. I find working as partners with the patient/spouse/family is key- and making the environment safe is imperative.

Brian: The dearth of literature on this topic is somewhat alarming and very little has been done in the US. So, for researchers out there- this is fertile ground. You are very wise to suggest we have a lot of catching up to do. The same was true 1-2 decades ago about discussing death as "normal" part of life.

I do not recall sexuality as a topic at past AAHPM meetings so simply including the topic under any category is a major step forward.

Tom: I laughed so hard I shook the house. Thank you!!
BenAzevedo said…
Hi Tanya,

Thanks for the encouragement to keep asking about this topic, and not only in palliative care. As a med student I am still uncomfortable when I get near the end of the "social history," but I have to remind myself that patients want me to ask it and that with practice, it will become easier. Thanks for the story, and great to meet you today.
Ben
HospiceNP said…
My 81 year old mother who has advanced dementia and has been a widow for 20+ years often says she is looking for a boyfriend "but all his parts have to work!"
Steffi said…
just linked this article on my facebook account. it’s a very interesting article for all.



Health Care
Anonymous said…
Haha ' love it!

Popular posts from this blog

Dying without Dialysis

There is a terrific article in this weeks Journal of Pain and Symptom Management by Fliss Murtagh of King's College in London about the epidemiology of symptoms for patients with advanced renal failure who die without dialysis.  This study is important because while we know that patients with advanced renal failure have a limited life expectancy and the average age of initiation of hemodialysis is increasing, we know little about the alternatives to hemodialysis.  Specifically, we know nothing about symptoms affecting quality of life among patients who elect not to start dialysis (so called "conservative management" - is this the best label?).  This article provides a terrific counterpoint to the article in last years NEJM showing that nursing home residents who initiated hemodialysis tended to die and decline in function (see GeriPal write up here). 

The study authors followed patients with the most advanced form of chronic kidney disease (the new name for renal failu…

The Dangers of Fleet Enemas

The dangers of oral sodium phosphate preparations are fairly well known in the medical community. In 2006 the FDA issued it’s first warning that patients taking oral sodium phosphate preparations are at risk for potential for acute kidney injury. Two years later, over-the-counter preparations of these drugs were voluntarily withdrawn by the manufacturers.  Those agents still available by prescription were given black box warnings mainly due to acute phosphate nephropathy that can result in renal failure, especially in older adults. Despite all this talk of oral preparations, little was mentioned about a sodium phosphate preparation that is still available over-the-counter – the Fleet enema.

Why Oral Sodium Phosphate Preparations Are Dangerous 

Before we go into the risks of Fleet enemas, lets spend just a couple sentences on why oral sodium phosphate preparations carry significant risks. First, oral sodium phosphate preparations can cause significant fluid shifts within the colon …

Does “compassionate deception” have a place in palliative care?

by: Olivia Gamboa (@Liv_g_g)

There is broad consensus in the medical community that lying to patients is unethical.  However, in the care of patients with dementia, the moral clarity of this approach blurs.  In her recent New Yorker article, “The Memory House,”  Larissa MacFarquhar provides an excellent portrait of the common devices of artifice, omission and outright deception that are frequently deployed in the care of patients with dementia.  She furthermore explores the historical and ethical underpinnings of the various approaches used in disclosing (or not) information to patients living with dementia.

Ms. MacFarquhar introduces the idea of “compassionate deception,” or the concept that withholding truths, or even promoting outright falsehoods, is a reasonable and even ethical choice for those caring for patients with dementia.  To the extent that it helps a person with dementia feel happier and calmer, allowing them to believe in a gentler reality (one in which, say, their spo…