Has abolishing medical paternalism gone too far?

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 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 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 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 adviser 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 indispensable role, each listening and learning, working towards achieving the best care and outcome.

James C. Salwitz is an oncologist who blogs at Sunrise Rounds.

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  • Kristy Sokoloski

    Very good article, and it caused me to sit and pause to think a bit. The thing that I ended up thinking about was your statement about saying we the patient can choose to treat said issue with “A, B, C” but I am recommending option B and here are the reasons why. My thought had to do with those that after everything is explained to them when it comes to the good and bad of each situation and then says “you know what doc, I am not interested in doing anything at all”. Where does that leave the doctor as it relates to the role in the physician-patient relationship and its connection medical paternalism? Does this mean that when there was more medical paternalism that the doctor could be much firmer with patients that don’t want to treat their medical problem whether it be because of personal choice or due to financial situation and say something like “Mrs. Jones, you absolutely must do this or else you will die even though you have said ‘I don’t want to treat my medical condition w, x, y, z”? The reason that I ask this is because the medical treatments for a number of conditions including those regimens used to treat Type-2-Diabetes are very expensive.

    I still see some very strong holdings to medical paternalism today even in spite of the various changes. A friend of mine saw her doctor about something and when he told her what the diagnosis was she told him she didn’t agree with it. Which of course is her right to say so and get another opinion for which she’s going to do, but the doctor basically told her she was wrong to question his diagnosis of her problem as she was not the doctor. Right, she’s not a doctor but again it’s her body and she knows it pretty well so if she thinks a diagnosis is wrong then she is in the right to get another opinion. Some doctors don’t like it when patients go and get second opinions and will outright tell them so just like sometimes would happen about 30 years ago. And you still have those that will also say to the doctor, “Ok doctor, whatever you say”.

  • Steven Reznick

    As an educator and advisor physicians can spell out the choices with the pros and cons of each option and offer to tell them what they would do if in their shoes or if this were their loved one. Hopefully this can done in a non paternal non arrogant way. If a patient wants a second opinion I will try and recommend individuals at academic centers of excellence. If the patient chooses not to diagnose or treat a condition I try and explain the pros and cons of that decision and then I try to support them in that decision if I ethically can . Sometimes you just need to end the relationship such as when I was asked to support a physically healthy woman with assisted suicide rather than go for mental health evaluation and treatment.

  • Lisa

    I don’t think I would want guidance from a doctor who made a major error (ir you had radiation or not) in reaching his conclusions. I hope you got a a second opinion.

  • Lisa

    When I was trying to decide whether or not I should have reconstruction when I had my bilateral mastectomy, my surgeon told me I was the only one who could make the decision. He did refer me to a plastic surgeon, so I would be aware of my options and could make an informed decision. The thing is the plastic surgeon he referred me to was very pro reconstruction. The plastic surgeon did not discuss all types of reconstruction with me but only discussed implant reconstruction as that is what she does. She presented a her view point and didn’t really discuss any of the possible complications or physical implications of putting implants under a major muscle. I had to seek out that information on my own by talking to several physical therapists and women who had reconstruction.

    Throughout my cancer experience, I had to make choices that required I do a good deal of research. My doctors gave me information and told me what they would do, but I would feel uneasy about the choice based on that information alone.

  • Lisa

    I’ve had several doctors retire, so have had to find new doctors. I know if can be problematic, but I do expect a new doctor to review my records and to be familiar with major aspects of my history. Whether or not I’ve had radiation is major, imo…

  • bill10526

    There was a red streak extending from my gangrenous great toe. “If the infection goes to the toe, it will have to go. Is that alright with you?” Did I really have a choice? It was gangrene!

    My toe was still there after the operation. I wasn’t so happy since I got my bicycle for Christmas.

  • rbthe4th2

    Unfortunately I was in the position of a doctor who had been talked to before about his paternalism from the patients. I dont think it made any headway. I got canned for “dictating” my care (no matter that I was right, even the doctor agreed with that) and asking too many questions (hmmm lets see, if there isn’t a basis for what you do, I guess so). No matter what, if a doctor is such that they can’t take patients that make decisions for themselves, wont give to you or explain alternatives or get angry when you ask, they need to advertise that straight up front. The ones I’ve found that don’t do that are the ones who don’t know medicine as well as they think they do.

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