When father knows best

 

Carrie is a 72-year-old retired real estate agent, with a high school education. She raised three kids, but they do not talk to her anymore.  Since her husband died, Carrie has lived alone.  A melanoma was removed from her right shoulder 2 years ago.  In my office, we stare at the CT scan display of a mass in her right lung.

 

What does that mean?”

“Well, we wouldn’t know for sure until we look under the microscope, but it has the appearance of cancer.”

“What kind of cancer?”

“It could be from the melanoma or it might be a new cancer of the lung itself.”

A telephone rings somewhere down the hall. Carrie looks at the floor.

“What’s next? What do I do now?”

“There are two choices.  We can do a needle biopsy back in the CT scanner or we can have a surgeon remove it.”

“Which should I do?  Which one is best?”

“It’s up to you.”

“I’m sorry … I don’t understand.”

“It is your body.  You have to decide.”

 

 Does this conversation anger you?  It really bothers me.  It makes my blood boil. However, ever since the doctor was knocked of his pedestal, this sort of disconnected and almost callous exchange has become more common.

For centuries medical paternalism … i.e. “father knows best,” was at the core of the physician – patient relationship.  The doctor understands all, has seen all and therefore has the burden and responsibility to make all health decisions.   The patient is ignorant and emotional, and therefore unable to cope with a frank discussion about medical decisions.  Only occasionally would the physician inform the patient what was happening, and even more rarely would that information be honest and complete. The failing-flock followed the super-shepherd.

There has been a much-needed revolutionary change in the medical relationship.  Motivated by a desire to control one’s fate, incentivized by physician arrogance and empowered by access to massive amounts of e-data, patients demand an equal or controlling part in their health care.  Unlike the doctor, the patient has to live with the consequences of medical events and therefore demands final say.

This shift in communication has resulted in more transparent and appropriate medical care.  However, in trying to redistribute the burden of analysis and decision by opening discussion and sharing knowledge some of the time the balance has tipped precariously in the opposite direction.  Like a parent who gives up hope of guiding an incorrigible teenager, doctors at times have heard the demand to stop being paternal as stop making recommendations at all.  The buck stops with the patient and therefore it is the patient’s entire responsibility to decide.

Each day I hear from patients how a physician tasked them with making the final decision regarding a complex, vital and confusing therapy, often from a Chinese menu of alternatives, without any directed guidance or expert bias:

–       Cardiac stents or bypass?

–       Surgery, radiation, chemo or observation?

–       Standard therapy (? which one) or research?

–       Open, robotic, or laser?

–       Watch and wait or operate?

–       Dr. Smith, Dr. Jones or Dr. Phud?

–       Lumpectomy or mastectomy with a flap, graft, expander or prosthesis?

–       Proton beam or hospice?

Now, do not get me wrong.  Choice is good and each patient’s right to make the final choice is paramount.  However, taking the diametric position from paternalism, charging the patient with knowing all and knowing best, is a poor resolution.  Whether it is a doctor who does not understand the dynamics of the modern medical relationship, or seeks to avoid medical-legal risk or simply is hesitant to state an opinion which might be wrong, it is still unfair to burden a frightened, sick and often confused patient and family with the need to “play doctor,” with their own lives.  It is cruel to abandon the patient at the very moment they need support and professional perspective.

The physician as skilled advisor has significant advantages in making medical decisions. They have the education and understanding of the biology and research, and a more sophisticated view of medical controversies.  They hold a long view, which is to say that they have seen it before.  Finally, and critically, they can be impartial; it is hard to be objective when one’s life or health is uncertain.

The key for doctors is to understand that the information they offer is not commands, but rather guidance and teaching. They should be willing to say, “Well, your choices are A, B or C, but I would recommend B.  But, whatever choice you make I will support you.”  Physicians must avoid any hint of; “B, take it or leave it.”  Educate, guide and support.  It is a team sport and the patient owns the stadium.

The physician – patient relationship flows back and forth.  Each has a vital role connected by communication, and trust.  It is not the role of the physician to lecture as if to a small child.  Equally, we should not burden the patient with medical intricacies beyond their ability to fully understand. This risks bad decisions, anxiety and guilt. The ideal relationship is balanced; the informed patient is supported at each turn. Two committed individuals working together, each playing an indispensible role, each listening and learning, working towards achieving the best care and outcome.

15 Comments

  • Isaac Bromberg
    J Palliat Med. 2014 Apr;17(4):415-20. doi: 10.1089/jpm.2013.0408. Epub 2014 Mar 3. When open-ended questions don't work: the role of palliative paternalism in difficult medical decisions. Roeland E1, Cain J, Onderdonk C, Kerr K, Mitchell W, Thornberry K.
  • Liz
    That 'conversation' you used as an example is a variant of one of the several reasons why I finally fired my NIH designated comprehensive cancer center oncologist after 2.5 years. When I had seen him for the first time he stated X would be the treatment. I then asked "what about Y?", something that had, several years running at the ASH conference, reports of longer remission and fewer side effects, than X. Further he was on the NCCN board that publishes science based cancer guidelines and so he KNEW treatment Y was going to be added to the list less than a month after that conversation (eg the updated guidelines were published and it is unlikely this group of 20 or so oncologists just decided that on the spur of the moment the day before the new guidelines were up on the website) yet he didn't even bring up the treatment. When I brought it up he said "that is a fine treatment. You can do whatever you want.". I was seriously annoyed. I wanted a discussion of the pros and cons of both treatments, why he suggested one over the other, etc. I didn't get any of that despite pushing him. He just kept repeating that Y was a fine treatment and chose whatever I wanted to do. He started out paternalistic and then when I asked about something else he washed his hands of any input into what kind of chemo I had and left it totally up to me. In my opinion that is irresponsible bordering on negligence. If MD's are supposed to have all this specialized training and knowledge, refuses to use it when a patient asks questions about treatment and then washes his/her hands of any input into what treatment is used for the patient, that is, in my opinion, malpractice.
    • Iris
      Liz, perhaps your oncologist didn't feel enough people were in the study to actually feel it was so much better. I always listen to my onc but it is always my decision. I looked up all the information myself, and I know what my body can take. Different doctors all have different personalities. Perhaps you should just change the doctor in the practice.
      • Liz
        It became one of the standards of care almost immediately after I started chemo and he is on the committee that makes that decision and so he already knew it was going to become a standard of care. My issue was with how he dealt with my desire to discuss the situation. He behaved just like the example given in the blog and that, in my opinion, is unacceptable. There were plenty of people in the study. The issue is his manner. I have already changed onc's.
        • Iris
          I'm so happy you left your previous onc. Apparently he has the G-D complex and feels he knows everything so don't question him. I met plenty of those too. Will the MD care when he knows you're not with him anymore? FOR SURE! I'm proud of you, Liz... Pallliative patient
          • Liz
            No he doesn't have the G-D complex. He is just unwilling to engage in discussion about the pros and cons of a treatment so if you ask questions about another treatment vs the one he was going to do he shuts down, withdraws from the decision process and tells you that anything you want to do is fine. He is not especially interested in treating the entire person either. The first visit with him was fine (well except discussion about treatment choices), all the rest not so much. He uses mean, put down comments at the patient's expense and then calls it humor. I would suspect he makes fun of some of us behind our backs based on what I have overhead in the halls. He is bright, knowledgable, competent, etc. just a colossal jerk and he fits into a variant of the type of doctor this blog entry was about. And I am very glad to be rid of him.
  • meyati
    The front of my Oncology records says Non-Compliant Patient- I think that it's on my EHR too. My current physicians, except for my PCP think I'm a sweet heart. I make sure that my documentation is current. When I ask them a question-I assure them that I'm asking for a 'Guesstimate"-a rough idea of what to expect if I do plan A- They like the word "Guesstimate" because it shows that I'm realistic. My first oncologist that labeled me--On my second visit- I took in a biker grandson to get answers about his plan of action-why was it taking so long when he said that it would be done in a hurry. I do tell them that quality of life is a high priority for me-and we'll base care options on that. I watched my father die from stomach cancer-so I'm not to naive- I don't expect miracles. I just wish that I didn't have to take a biker in with me- or look for a mean nun that will rap a doctor's hand with a ruler, when he lies or doesn't quite tell the truth.
  • Given the variations of the human body and cancers....specific more individualized options should be available with a knowledgeable physician. Recommendations based on the goal of best outcome with least negative affects would be right. Resolution of interfering circumstances first might help. Authoritative approach with respect for the patients individual info needs I would think would be best. Great post!
  • Cathy Pearl
    Nothing angers and frustrates me more than my gyn/onc saying "what do you want to do?" when I'm faced with several options. How would I possibly make an educated, intelligent decision? I am not a doctor, I've hired a doctor to help me make these decision, not to leave them up to me. So I always turn it around with "what would you do?" Next time she asks me this, I am going to state that I have no knowledge base for this type of decision. I need to rely on you to make the best one for my particular case.
  • Very good look at a complicated issue. I'm in favor of patient decision making, but I also know that a lot of patients are utterly clueless. A non-dogmatic recommendation, or a "pluses-and-minuses" of each option are good alternatives to the former paternalism and dogmatism that were so common.
  • pam956
    This is such a relevant blog topic for me. I struggle with communication and trust. It is quite easy to blame the doctor or any professional for failing to meet my needs and then determine that their opinions can not be trusted. But it really takes two people to make a relationship work or not work. Good relationships just take time, something no one seems to have much of these days,
  • D Someya Reed
    In keeping with the paternalistic theme, what you're saying is not unlike a father that says to his recalcitrant teen "Well if you're so smart why don't you figure it out." Many doctors who were "on a pedestal" don't like that they've been booted off. Remember how many doctors were (or still are) upset when a patient says, "Well it says on WebMD that...?" Yet now with the push for telemedicine, many of those same doctors (and hospitals) are pushing WebMD and a few other sites as good places to get information. I often wonder if there isn't an unspoken, "So you won't bug me" in there too. There are those doctors who don't prefer patients that are well informed rather they appear to feel that it somehow infringes on their territory. I believe there are just as many doctors now who've never experienced the "pedestal" but feel they have a right to be on it. They, too, subscribe to the "well if you're so smart" mantra but for a different reason. For some, it's "I'm still smarter than you...where did you (Mr/Ms patient) get your medical degree?" Now I'm trying hard not to mention the "H"-word every time but you did mention it...once...and it's like radar for me. However, there is an important parallel. You're saying here, just as you've said many times before, that doctors by virtue of their position held a certain power over and a compliant/unquestioning "respect" from their patients as the doctor/father figure. This has lasted for many, many years. It's now apparent that this has not turned out to be a universally good thing. Hospice, though a similar mixture of good and bad exists with some of the same players (doctors & nurses) as in private practices or hospitals, has the same general mix of patient-friendly and patient-paternalistic (un-friendly) attitudes. To be gender fair, there are those who do not display the good maternalistic qualities, either. Yet, hospice and its promoters (be they the public, doctors, nurses or politicians) want us to believe that all hospices are unquestionably good and no bad will ever happen "in" one for no other reason than they are simply hospice or have the word hospice in their name. I won't belabor this but just ask readers to think about it. It's not that dissimilar to the time when doctors were felt to be nearly omniscient just because they were doctors. Besides my blood boiling, as well, for all the situations you describe, I have one other. I am often asked by both family and friends to attend doctor visits kind of like an interpreter but with a little bit more. My father-in-law asked me to attend his own cancer treatment visits after he saw how I cared for his daughter and how I related to the doctors/nurses in hospital. In another case, I take an 88 yr old man to his doctor appointments because his wife (due to her own disabilities) is unable. Often, he cannot remember (sometimes doesn't even hear) what the doctor is saying. No matter who I bring, what invariably happens is that the doctor will start talking in doctor-speak. When he/she sees who understands what is being said, the doctor will then converse directly with that person only. In my case, this is always me and the doctor acts as if the patient is not even in the room. I hate that! I simply point to the patient (sometimes repeatedly during the visit) as I explain to the patient what was just said and ask the doctor to please be a bit less technical (for the patient's sake). They realize it but then often slide right back into the same mode. It is common for people, in all professions, who are knowledgeable about a subject to tend to gravitate to those who understand them best. But the doctor/patient relationship is quite different. It's absolutely apparent who the patient is from anyone else in the room. That's why we had to drag out all the HIPAA forms for signature in order to allow me to be there. Pam956 hit it right on the head with her comment about time. No one seems to have the time anymore. If they do, they don't seem to use it wisely, at least often enough.
  • Kris
    I think it comes down to the level of confidence and trust in your doctor and yourself. It doesn't matter how and why you made the choice. The final decision is always made by you even if it is the simple affirmation. If you are confident in your decision and trust that you made the right choice, with or without your doctor's input, you will hold yourself accountable regardless how the outcome will turn out. Help your doctor to help YOU to make the best decision for yourself.
  • One win-win solution is for doctors to prescribe decision making tools which patients can use at home to help them explore their options and make the right decisions for themselves. Healthwise Decision Tools for patients are available free at http://www.healthlibrary.com/healthwise/content/special/share.html
    • Iris
      How about cancer patients that have lung cancer.? Is the article stating that people with pneumonia shouldn't be on antibiotics even though one cough from this person may kill someone else by giving their germs a new host with dire consequences. I feel the article didn't touch enough information regarding common sense.

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