What’s good for the patient is not always what they want

The following article was originally published in the ASCO Connection magazine on February 22, 2017 (click here for the original). It was written by Anne Katz, RN, PhD, FAAN, who is a certified sexuality counselor at CancerCare Manitoba and a nurse counselor at the Manitoba Prostate Centre, in Winnipeg, Manitoba, Canada. The article is reprinted here with the permission of Dr. Katz and of ASCO. We thought that it would be of interest to many patients and patient educators who might not have access to the ASCO Connection.

One of the nurses knocked on my door on a quiet Monday morning.

“Hey, can you see this patient? I guess it’s not urgent but he’s here now and I think what the doctor told him just threw him for a loop.”

Of course I had time. In my role as clinical nurse specialist in a busy uro-oncology unit, I see men who need help making a treatment decision for management of their prostate cancer. As we walked towards the clinic room where the patient was waiting, the nurse filled me in on what had transpired. The patient, a man in his early 60s, had been diagnosed with high-risk prostate cancer. He had come to see the urologist to talk about next steps. He wanted to have surgery, a radical prostatectomy, and was expecting to sign consent for the surgery and receive pre-operative education from the nurse. She explained the procedure to him and when she asked him about any previous surgeries, he told her that he had a bilateral hernia repair with mesh. She then explained to him that we do not do radical prostatectomies in these instances as the mesh prevents access to the prostate. The patient was disappointed and asked to see the surgeon.

The nurse went on to tell me that the surgeon went into the room and came out roughly 5 minutes later.

“Okay,’” he said to the nurse, “I’ll book him for exploratory surgery when I have time. It’s not likely that I’ll be able to remove his prostate but he really wants the surgery.”

The nurse went back into the room and explained to the patient that she had an ethical responsibility to tell him that the likelihood of the procedure having the desired outcome, removal of the prostate, was low and that he would be having an unnecessary surgery with its attendant risks for nothing. She went back to the urologist and asked him why he was prepared to do the surgery if ultimately the prostate could not be removed.

The surgeon’s reply was, “Well, he wants surgery and I want him to be happy.”

That’s when the nurse came to call me.

I introduced myself to the patient and asked him what he understood about the goings-on that morning. He seemed clear that he wanted surgery but was less clear about exactly what would be done during the surgery. He had read some material from the American Cancer Society that recommended surgery and that is what he wanted. He recalled that the nurse had mentioned something about radiation therapy but the material he had read said that if he had radiation first, he could not have surgery in the event of a recurrence. So he wanted surgery.

We had a long talk and at the end of the discussion, the man was agreeable to seeing a radiation oncologist about external beam radiation therapy in conjunction with androgen deprivation therapy, the evidence-based recommendation for high-risk prostate cancer when surgery is not possible or recommended. He saw the radiation oncologist the same day, was booked to have fiducial markers inserted and was started on a non-steroidal anti-androgen immediately according to protocol.

I was left thinking about keeping patients happy and what that means. In this case, the man would have had surgery, been hospitalized, and then had to wait another 6 weeks before starting radiation therapy. He would be exposed to the risks of anesthesia, albeit low, and the potential for hospital-acquired infection or sepsis. He would miss work, have to stop his daily exercise routine, and depend on family and friends for assistance while recovering. This being Canada, he would not have had to pay out of pocket for the surgery, anesthesia, or hospital stay; that is covered by our taxes. But he would certainly pay in other ways, and how happy would he be then?

Patients often have to make difficult decisions about treatment without the benefit of knowledge and experience. They rely on instinct (just get the cancer out now!) and anecdotes from and about others who may have a significantly different cancer or histology. Discussing the options and rationale for treatment, and not trying to make the patient happy, serves multiple purposes, the most important being minimizing harm from ineffective treatment.

The nurse who asked me to see this man is a knowledgeable professional with close to 40 years of experience in urology and now uro-oncology. She is also a fierce patient advocate and someone who acts with ethical principles in mind. She makes patients happy by looking out for their best interests, which is not always the same thing as giving them what they want. I wish everyone on the team was like her …

Editorial notes: The ideas and opinions expressed on the ASCO Connection Blogs do not necessarily reflect those of ASCO. None of the information posted on ASCOconnection.org is intended as medical, legal, or business advice, or advice about reimbursement for health care services. The mention of any product, service, company, therapy or physician practice on ASCOconnection.org does not constitute an endorsement of any kind by ASCO. ASCO assumes no responsibility for any injury or damage to persons or property arising out of or related to any use of the material contained in, posted on, or linked to this site, or any errors or omissions.

The “New” Prostate Cancer InfoLink thanks ASCO and Dr. Katz for kindly allowing us to “re-blog” this article on this web site.

7 Responses

  1. Your sitemaster would note, in regard to this article, that some patients who have hernia repairs requiring the use of mesh may still be able to have surgical treatment for their prostate cancer. A prior hernia and the use of mesh in the repair of such a hernia is not an absolute barrier to the possibility of radical prostatectomy.

    The appropriateness of such patients for surgery can only be determined by an individual surgeon using a specific surgical approach for an individual patient.

  2. I absolutely agree with the sitemaster … I recently had robotic prostate removal surgery at Hopkins and my surgeon had no hesitation because of my double hernia repair with mesh 20 years earlier.

  3. HIFU is what that patient should have been told about, and given the circumstances even our primative insurance system should have covered it! It will be approved shortly …

  4. I wish everyone on the team was like her …

    unlike the surgeons who

    want him to be happy

    and only care about their own interest. Shameful. The patient might be ignorant and stupid but at least he has nothing to be ashamed of.

  5. Dear Don:

    This was a patient in Canada, where HIFU has been available for some years … but there is no way for you or any other reader to know that it was appropriate or not appropriate for this patient. The relevant information is not provided.

  6. An opposite experience with the surgeons I had chosen – thank God!

    I was in a roughly similar situation in January 2000. After studying material from the American Cancer Society on prostate cancer, I had concluded that my best odds were with surgery, and the preeminent prostate cancer surgical center at Johns Hopkins was only 60 miles away. Having consulted over the prior 3 weeks with two other urologists, both of whom considered my case challenging and another doctor who mentioned the possibility of brachytherapy (but was so concerned about a lawsuit that he had a nurse confirm to me that he wasn’t recommending any particular course), I screwed up my courage and called Johns Hopkins to get on their surgery schedule.

    A gruff female nurse answered the phone, and, sounding like a gravel-voiced retired drill sergeant, asked me for my PSA (113.6), Gleason score (4 + 3 = 7, done by Dr. Epstein at Johns Hopkins), and stage (2 at that point, upstaged to 3 within 2 weeks). She then said “Hold”, and the phone went silent. Within a minute she was back, informing me bluntly in a businesslike tone that “You are not a surgery candidate.” (She did offer a consultation to consider other options, which I accepted.)

    I was devastated and shaken, as was my wife when I shared the nurse’s statement. A couple weeks earlier we had had an expert and realistic but compassionate consultation, delivered with some optimism, at the City of Hope cancer center near Los Angeles, where we had taken a Christmas vacation to see family. The contrast between the two centers was stark, and for a while I thought of Johns Hopkins as the “City of No Hope.”

    Of course the Johns Hopkins’ staff were right, and I am now deeply grateful that I was not subjected to surgery that almost surely would have been insufficient to control the cancer in my situation, but it was hard to appreciate that at the time. I actually had a chance to thank Dr. Patrick Walsh, who was the guiding force behind the guidance I received, at an FDA hearing on HIFU in 2014. It’s likely the case that the vast majority of patients newly diagnosed with challenging cases are highly dependent on the doctors they talk to in the early days. They just do not have the time, energy, contacts, knowledge of how to develop key information and confidence that is needed to become empowered during that period. This is where support and education groups can play a critical role.

  7. I’ve been on the prostate cancer merry-go-round (which, as we know, isn’t very merry) for more than a decade, and all I can think after reading this is, “Dr. Katz, you’re at the top of my clone list!” Though much time has passed since my initial diagnosis, I can easily recall the dismay and confusion I felt back then, and rather unfortunately, still experience today. And I’m afraid it will always be so. In our current healthcare climate, the question “What should I do?” is rarely given a definitive answer. Myriad treatment options, vested provider interests, and the misguided perception that something better is just around the corner all play a part. It’s why we need more clinicians like Dr. Katz and blogs like The “New” Prostate Cancer Infolink!

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