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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 anarticle 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

This Post Has 9 Comments

  1. 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.

  2. 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.

  3. 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!

  4. 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!!

  5. 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.

  6. 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!"

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