Why shared decision making matters

As a nurse who worked for a surgeon, I had to spend a lot of time talking to patients and educating them about their proposed surgeries.

The surgeon talked to them first, of course, but often patients don’t remember everything the surgeon said. Or they think of questions after the consult.

If I couldn’t answer a question, or if I thought the patient really didn’t understand what the surgery entailed—why it was being done, other options to surgery, recovery time, etc.—I would ask the surgeon to please speak with the patient again.

If I was going to sign my name to a consent form as a witness, I wanted to be sure the patient really understood.

That’s why a recent post on the medical blog KevinMD upset me so much: We cured her, but the result was unacceptable

An oncologist writes that he had been treating “a wonderfully vibrant 68-year-old woman from Haiti” for uterine cancer, but her tumor was not responding to further chemotherapy so he sent her back to the surgeon.

The surgeon then proposed doing an incredibly radical procedure—a total pelvic exenteration—that removes all the organs in the pelvic cavity: the uterus, ovaries, vagina, bladder, colon, rectum and anus.

The patient ends up with two holes, or stomas, with bags to collect urine and stool. Forever.

I later heard that surgery was successful — the tumor was removed entirely. I was relieved to hear it, but the next day I heard that she was refusing to leave her bed or talk to anybody. Psychiatry had been called, but she refused to see them. All of this had concerned me, so I went to the hospital to see her.

As she lay in her bed, I was struck by how different she looked. Gone was the smile, the dancing in her eyes. Instead, she scowled, brows furrowed, refusing to meet my gaze.

I said hello quietly as I headed towards her. “How are you?” I said, because I didn’t know what else to say.

She looked at me then with anger in her eyes. “How am I? How am I?” she said angrily. “Look at what you’ve done to me. These bags are not natural! How do you expect me to live like this? And I have no vagina: You’ve made me into a Barbie doll!” She talked about the shock of waking up, looking so different from how she was. “Butchery,” she called it.

This is a patient who clearly had no idea of the extent of the surgery she had consented to. Was her tumor gone? Sure, but at what cost? Now that she understood what the surgeon meant by “total pelvic exenteration,” she didn’t want it. Too late.

I tried to talk with her about the big picture; that the surgeon had successfully removed her cancer, and that the hope was that she would be cured and could live now without needing chemotherapy.

“Live?” she asked. “I cannot live like this. I cannot.” At that point, she cried, looked away, and refused to answer any more of my questions.

The oncologist partly blamed himself, because he did not question the surgeon even though he thought the procedure too radical, and performed too quickly (within a week of the consult).

And when the woman died a month later, presumably from a blood clot to the lung because she refused to get up from her bed, the physician was “devastated.”

We had cured her (I think), but the result was unacceptable. It was as if the decision to proceed with surgery was made for her, not with her. That we had not given her enough time to consider alternative options, including the one not to do any further treatment.

Knowing my patient died so soon after surgery was a sobering experience and a reminder that, even if we can do something, sometimes it’s better to take a step back and ask the more important question: Should we?

It’s all about shared decision making. The patient—along with a spouse, friend or other family member—having a real conversation about any proposed treatment plan, surgery or medication.

Related post: Be informed – Shared decision making

Patients need to be prepared to ask, and doctors to answer, such basic questions as:

  • What is the standard or care or most typical treatment for this condition?
  • What are the other options?
  • What are the most conservative options, such as lifestyle changes?
  • What are the most likely outcomes for each treatment?
  • What are the side effects/cost of medications?
  • What is the recovery time from the surgery? How will I be different?

Shared decision making tools have been developed to help both the patient and the physician/surgeon come to a mutually-agreeable plan of action based on the patient’s personal healthcare goals. I’ve listed some of these organizations on my Resources page.

Very few conditions require immediate decisions. Especially when a surgery or treatment is life-changing, please take time to consider all options carefully.

Surgeons by nature take charge and move quickly (and that’s usually a good thing), but patients need to be able to say, “Wait. I need more time to think about this.”

Again, it’s all about choosing a treatment that is right for the individual. Different people will choose different options.

If you, a family member, or friend are facing a tough medical decision, please take time to review some shared decision making resources and be prepared to ask lots of questions.

Do not sign an informed consent form without being truly informed!


Frugal Nurse

Related resources for shared decision making:



Why shared decision making matters — 2 Comments

  1. What a great find to discover your site! It’s true that patients don’t retain everything the doctor says and that’s where patient education can come in.

    • Hi Beth, thanks for the nice comment. Patient education is so important, and it seems there is less and less time to provide it. I always counsel patients to bring along an extra pair or two of “ears” as that can save time in the long run. Cheers, FN