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.
by: Tanya Stewart MD FAAHPM