The new conversation

Posted by on Aug 19, 2015 in Family & Disease, General Medicine | 19 comments

The new conversation

A colleague complained that during a particular type of critical conversation his advice is ignored. Women with breast cancer deciding whether to have mastectomies disregard his guidance and seem to have reached a conclusion before he discusses the issue. Given that this physician has committed his career to the study and treatment of breast cancer, communicates clearly and patiently, projects caring and compassion, I thought that his observation warranted discussion.

Some will say that this perceived failure of women to discuss something so personal with a man, has an obvious base; there is distance, because there is no natural empathy. For some women and male doctors that is valid, and is at least a partial explanation.

However, there are many doctors, men and women, who understand and connect with members of the opposite sex about deeply personal issues. They share the experience of being human and are able to advise their patients in a compassionate and supportive way.

Could the problem be The Internet? This infinite treasure trove better prepares and educates. In doing so may create a gap between doctor as teacher and patient as student. Women contemplating an action so momentous as losing one or both breasts, may spend hours studying and becoming an “expert” in their disease. The patient may be so well prepared as to project a position of finality when they sit down for a consult.

However, it is more my experience that online education forms the basis for enhanced discussion by teaching language, science and listing alternatives. Then the physician’s role is to put the patient’s specific case in context and to rank choices in a realistic way; to balance risk and benefit.

Could the issue be an absence of trust? In that case, patients will have little regard for the doctor’s opinion. However, frankly speaking, in an elective medical situation, it is unlikely that every patient who sees this doctor has lost confidence in his ability.

I suspect that the biggest issue has to do with the changing dynamic of the medical conservation.   Once-upon-a-time, in the paternal days of medical care, the doctor decided for patients, as he would decide for his own children. It was a simpler time both in our homes and in the physician’s clinic. Father knows best. Do not talk unless spoken to. Spare the rod and spoil the child.

The movement toward individual patient empowerment has changed the tone and balance of the conversation. The doctor is no longer the final decision maker, if really he ever was. The doctor is advisor, educator and guide. He is not the pilot; he is the assistant navigator. The captain patient decides not only destination, but also the journey’s path.

For certain doctors, at certain times, this change in how information is shared and decisions made, may sound like the patient is not listening.   The doctor may feel superfluous or disrespected. I suspect this is a failure of the physician to understand the dynamic of “modern” medical conversation. The patient means no disrespect, but may automatically feel in change.

In raising children, they call it “scaffolding.” Give the child as much freedom as they want, need and deserve, but always stay near, ready to advise or support if they start to falter or fall. Allow the child to explore, but not be harmed.

In healthcare, scaffolding has a place. The difference is that while the child has the illusion of decision-making and independence, for the patient these are absolute requirements. Still, the doctor needs to educate, support, and always stay near, ready to advise or catch the patient if they begin to fall.

Every relationship between every patient and every doctor is different and changes continuously. There are times when the doctor is absolutely in control, such as in medical extremis or in the operating room. At other moments, the patient must stand completely alone. Some patients want or need more control, and others less. Families are part of the control matrix. Ongoing changes in a patient’s health alter how information and decision making flows.

One of the greatest advances in healthcare of the last 10-20 years has been the change in The Conversation. Successful medical care has always required patient understanding, thought and commitment. Our continued movement toward involved, educated and empowered patients is as important as sequencing the genome. Doctors must understand that medical decisions are about the patient, and not feel threatened, guilty or confused. We must applaud when the patient steps up and says loudly, “It is about me!”

 

 

19 Comments

  1. You don’t need to applaud patient participation as much as you need to encourage it. The work you do is a privilege, an honor. I respect your knowledge and intelligence, but don’t feel the patient is equally respected.

    • I am in agreement with you. Patients are spoon fed as little information, or as much information as is the intent of the specialty office they are visiting at the time.

      I have a feeling medicine will change dramatically in the next century. Silos and pedestals are coming down.

  2. While in the gym with his best friend, my husband relayed concern for my upcoming mastectomy to this friend. The friend’s reply shocked and bewildered him. “What’s the big deal, it’s not like losing a penis”.

    For the patient, it’s a shocker, to lose any body part. Especially when a patient does not feel sick to begin with. The cascade of events that unfold after amputation do not even come to mind during the first surgical event.

    All points you make are quite valid, please note that cancer patients are most often faced with the surgeon’s knife before they see you the oncologist, who is the most knowledgeable person in their treatment protocol.

    Please change medicine. Please make the first stop in any type of cancer diagnosis, to the oncologist’s office for education. Please have the oncologist explain ALL the scenarios, take hours, or days, or have a onco nurse see the patient and REALLY educate us. Show us the protocol, the algorithm that you plan to use. Make us aware there are variations to this plan as more information about the type of cancer and the patient’s personal response to the treatment unfolds.

    Historically woman have kept their bodies secret, always robbed, always a curiosity, and if things go wrong, such as surgical mastectomy they have kept that to themselves too.

    Thanks to the internet, this is the age of “the Scar Project”, and cancer blogs-like your own, where we can speak out and connect with others.

    Still, when I first heard the words-from my surgeon-you have breast cancer, I knew nothing…………

    .

  3. The words “perceived failure of women” say so much. I believe we would be far, far ahead if the word failure disappeared from assessment of women’s reactions.

    That said, I still appreciate all your posts.

    • Margaret (and Dr. S): I too flinched when I read that line “perceived failure of women”. In other words, women who do not exhibit the appropriate level of deference, obedience, dependence and compliance are pretty well failing to be “good” patients.

      I am reminded of a nurse who scolded me in the ER while I presented with textbook heart attack symptoms, was misdiagnosed with acid reflux, and sent home in mid-heart attack. But just before I was discharged, approached me and warning me to stop asking questions of the doctor, adding: “He is a very good doctor and he does NOT like to be questioned!”

      The question that I’d had the temerity to ask him? “But doc, what about this pain down my left arm?”

      Uppity women just need to keep silent, I guess….

      • Oh no! You’re going to hear me ROAR!

  4. Maybe the patient is overwhelmed by cancer and only a few words are heard. I have endometrial cancer 4 1b n I hardly ever went to the dr as I wasn’t very sick. I didn’t know what questions to ask till I left the office n then I realized later that after my consoltation visit all questions are glossed over. After I signed my life away they didn’t really care to answer any more questions at my treatment facility
    The Dr’s at SCCA were wonderful n they answered my question no matter how many times I asked the same one

  5. I trusted my instincts when the surgeon wanted to remove some Breast tissue that was suspect after a mammogram. Can’t explain it but every fibre said dont do it. I saw a specialist who, after another mammogram, told me to for get it as the kind of micro calcification I had was seen in any woman who had a child and was not an indication of Breast cancer. I could easily have had unnecessary surgery and perhaps other treatment. That was 25 years ago and every mammogram since has been fine.

    • Only trust a surgeon if you’re eyes are closed, you cannot breathe, your heart stopped, and your life depends on it. They may mean well, but they are surgeons first and medical systems wide doctors second.

  6. While being stunned by a cancer diagnosis, and contemplating having parts of our bodies removed or having treatment that may leave us with permanent side effects impacting the quality of our lives, we have to be so careful about how we ask questions and make sure that we show proper deference to the doctors. I do not say this sarcastically. It is the reality of the situation, and can be very difficult. I wish that patients and doctors could work together to create a new reality that does not place this pressure on patients.

    • Agree-100%. This is the last generation to accept conventional wisdom. We have the power to own our research, the power of discovery, the power of VOICE.

  7. I have an enormous bias toward anatomical completeness.
    I was 21 when radical surgery removed the muscles that the rest of you use to hold up your head and to control your shoulders. The medical team told me that was what they recommended. The next day I was delivered the Good News that all the muscle and lymph tissue had been microsected and no trace of cancer found. And I think: So it was fine and now it”s gone.
    Over 20 years later the oncologist told me that the medical team had not wanted to do such a radical surgery, but my father had absolutely insisted, because how else could they be sure they got it all? As though there could ever be a guarantee in ANY case. But he was so very insistent and so they did it. Think about all the different parts of that one.
    I am, after all, the one whose life has been made very painful and difficult. I wish I had had access to the kind of information people do today, with all the caveats. Knowing myself, had I been involved, I am pretty sure I would have made another decision, yet over 20 years go by before I even hear that this discussion took place – with my father. At the time, I really thought that I was fully informed and involved, and I was terribly wrong.
    About 15 years ago another doc emphatically advised me to have a total hysterectomy with ovaries. That time I did my own research, talked with a GYN oncologist and with women who already had that surgery. I decide to do nothing besides regular checks. My doc was apprehensive at the time, but 15 years later it certainly seems that I made the right call for me.
    And your friend the oncologist is aggrieved that not every patient follows his advice…

  8. Kathleen, I cannot begin to imagine the quality of your life after this type of surgical dissection. How the dynamics of both patriarchal family and medical care came into play “on your behalf” was routine 20 years ago, and I believe still is today. As Pam put it simply in the first post, respect for the patient, requires adequate resources and energy to be provided to the patient to make informed decisions. There are some religions that do not accept life saving measures such as blood transfusions, and doctors are taught to respect this. Let’s say you had been a reporter gathering facts for your story 20 years ago. Most likely you would have dug up many different medical opinions and scenarios. Yet the decision to surgically “save” your life was made for you, and was covertly gender biased.

    Historically, medical schools have been quick to discount women’s health such as heart attack symptoms, and quicker to remove female body parts-how many women over 70 still have your uterus today? And quick to discount women’s hormonally related mental health issues such as post partum depression for example.

    I applaud your decision to forgo a hysterectomy. Sometimes I think it’s easier for the medical community to remove feminine parts, otherwise these complex and variable female systems have outcomes that may be harder to medically manage. Managing difficult medical cases, uses a doctor’s time which impacts the practice’s bottom line significantly. Recently, as women have been allowed to enter the professional medical arena nationally salaries have begun dropping.

    As patients I believe, education, taking an active interest in your life and body, and taking the time to research is how we humans-male and female, can make informed decisions. With education come seeds of doubt surrounding status quo policy and procedure.

    You’ve had time to think about your health, to educate yourself, to get angry at the status quo. Many of us also have. We must take the reins, or be content to be ridden hard and put up wet.

    • You have voiced many of my own thoughts, Kathryn.

      To be perfectly clear about the timing, my radical neck section was 40 years ago, not 20. And it was 20 years ago that I first learned that, without my knowledge, my father persuaded a medical team to perform radical surgery on me. Many things really are different now, and I wish I could be sure that couldn’t happen today, but I am not. I believe that constant vigilance is necessary.

      Only constant vigilance has saved me from a slow, miserable death from conditions caused by my cancer treatments, especially long-term effects of head and neck radiation. I can read medical journal articles and correctly diagnosed myself multiple times, yet was dismissed for years. They wrote “anxious female” in my medical record.

      When I finally found the right docs, they were shocked that my conditions hadn’t been recognized by their predecessors. Not your run-of-the-mill conditions, but rather clear presentation… And a perfectly reasonable consequence of my radiation bombardment. But while my conditions were unrecognized and untreated, my health suffered permanent damage, and I would have died a slow, miserable death, had they continued untreated.

      Nobody should have to fight for his or her life as though waging a military campaign. But today at least we have more tools.

      • I second that, Jeffery—Bravo again Kathleen!!

  9. Bravo!

  10. Patients thoughts and feelings should always come first when it comes to possible treatments. When a shadow was first found over my lung on an xray my Doctor told me it could be this or that but if it was this than start thinking of getting my affairs in order and a grave plot picked out. Imagine how upset this made me feel. I found out I did have cancer but so far it has been curable.

  11. Would this colleague have the same complaints if he had breast cancer and a doctor as committed and learned as he told him that he (or maybe better yet, she perhaps) didn’t know what causes breast cancer, didn’t really know how to cure it but wanted to remove parts of this colleague’s body, piece by piece if need be, in the hopes that it might give this colleague a little more time but not say how much time and even though this doctor would add that there was no way of knowing if any of this would work, would gladly give him some statistics if he’d like?

    Should this colleague, would this colleague be likely to say, ‘Sure, do whatever you want. You surely must have only my best interests at heart. Certainly, should I survive, you will be there by my side every day to deal with any side effects or complications. You know me, you know my body, you know my goals for my life better than I know them myself. I trust your judgement above all else.’

    Of course, this is an unrealistic scenario but is this what any doctor truly wants to hear from a patient? How does any doctor deserve the right to force their will upon another without question, or complain when unsuccessful at it, when they have never stood in the patient’s shoes?

    Isn’t it also said that doctors themselves make the worst patients?

    True compassion comes from the heart. It can’t be taught. Common decency comes from the same place as “the golden rule.” It can be taught.

    What are we teaching that gives doctors the right to complain about what a patient decides to choose or not to choose?

    • D. S. R, well said, I love your comment so much I’m printing it out to hand to my oncology nurse. She is one who would appreciate and understand this.

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