When an advocate goes too far in the exam room

asco-logoWhen is an advocate not an advocate? When should a spouse step back and let the husband make a treatment decision? When should an adult child of a man with prostate cancer let their father decide what is best for him? These are questions that, fortunately, I don’t have to ask all that often. Most men I see for prostate cancer treatment decision-making have a supportive spouse or partner who listens, makes notes, asks questions, seeks clarification, and ultimately allows the man to choose the treatment that he thinks is right for him and them as a couple.

And then there are the other men. The men who come in with their mothers or daughters who don’t want to leave the room for any reason. I am happy to talk about the generalities of treatment with them in the room; they care about their son or father and if this is who he wants as his support, then so be it.

However, when I suggest that the female relative step out so we can have the “sex talk” (i.e., a discussion about the sexual side effects of treatment), that is when they need to leave. Most times they are happy to do so, and I have an opportunity to talk to him alone. This way I can also get the uncensored version of what he is thinking and feeling without holding anything back because his mother or daughter is in the room. For many adult children, the thought of their parent as a sexual being is disconcerting, and the daughter usually leaves the room, sometimes even with a chuckle or slight blush. But there have been one or two occasions when they have declined my invitation for a private few minutes, and I have gone ahead and had the sex talk, uncensored and frank as I do with all men, and if either of them are shocked or embarrassed, I am not to blame. They knew what they were in for.

On occasion I have also seen a spouse highjack the appointment to talk about their own health care experiences and/or health issues. Recently a woman took over the appointment and dove headlong into a description of her ailments and disappointments with the hospital system. She talked over my polite attempts to steer the conversation back to her husband, who was the patient in this encounter. He sat in the chair with a slightly apologetic look on his face while she carried on talking. He was likely used to this. However, I was not. When she paused briefly to draw breath, I interjected strongly: “Mrs. X, at this appointment your husband is my patient; you are not. Please let me return to the discussion about his treatment decision.” That stopped her, and a small smile crept into the corners of his lips. I am not sure if anyone had managed to stop her before and while I felt a little bad about shutting her up (and out of the conversation), the truth is that he was the patient, not her, and while she obviously needed to talk about her experiences, this was not the time and place.

These two kinds of family members are unusual. Most spouses are reluctant to insert their opinion into this weighty decision. And this includes spouses who have some or a lot of medical knowledge, usually nurses but occasionally physicians too. Some adult children advocate for their father by arriving at the appointment with piles of papers they have printed off the internet. If I am lucky, they have understood what they have read. Most often they have cast a wide net and in the pile of papers are claims from dubious “professionals” — outlandish and definitely not evidence-based — about curing prostate cancer. It can be challenging to steer the conversation back to what the man wants to know, what questions he has, and what his concerns are when there is someone peppering me with questions or demanding to know why we don’t use beet juice and/or PET scans to treat cancer. While I don’t mind educating the whole family, I do mind when the patient gets shut out of the conversation. I understand that a diagnosis of cancer in one’s parent is terrifying and some children will do everything they can to control what feels like an uncontrollable situation.  But it is the man who is my patient and the focus of my attention.

I really like it when a couple has a list of questions or a well-read book about prostate cancer with many sticky notes showing where they have highlighted things they want to ask about.  I enjoy answering their questions, and I don’t mind being challenged by opinions or beliefs that they hold, even when they are not based in fact or evidence. Their appointment with me is their time to talk about what they want and my intent is to provide them with the information they need to make a fully informed decision. I am there to support them both if they need that, but I will not let the conversation be hijacked by something other than the matter at hand—first and foremost is the man and his prostate cancer.

Context is important in the work that I do; the relationship between a man and his spouse/partner and/or children informs and influences how he sees his life and health. It is important for health care providers to realize this and I would never suggest that family be left out of health care decisions, especially ones that have a significant impact on the man’s quality of life. Prostate cancer is often described as a couple’s disease, and while I think that every cancer diagnosis impacts on the couple and the family as a whole, the very real sexual side effects of prostate cancer (and other cancers of course) will impact directly on his spouse/partner.

In addition, his sexual and masculine identity may be affected negatively and that can have far reaching consequences for those who love him and live with him. So when a spouse or partner loses the focus of their appointment with me or when an adult child takes over, I listen for a while because it is important for me to meet the patient where he is — and that includes his family — but then the focus must revert back to the man and his cancer and his treatment choices.

The playing field is not level and there is more than one player on the team, but there is only one goalie and that is where my primary responsibility lies.

Anne Katz is a certified sexual counselor and a clinical nurse specialist at a large, regional cancer center in Canada who blogs at ASCO Connection, where this post originally appeared. She can be reached at her self-titled site, Dr. Anne Katz.

Image credit: Shutterstock.com

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