Saturday, 29 November 2014

Patient Preference: Not Always What It Seems

There have been suggestions that we look at the NHS in the United Kingdom for ideas that will improve health care in Canada. I've been told to look at The King's Fund as a source of good directions for goals to help in becoming an engaged patient and for ideas that we could use in North America. Even as I was hearing this I had a recollection of a research paper that I had read in the past and that did not impress me at all.

Here's the link. It's called "Patient Preferences Matter: Stop the Silent Misdiagnosis". I thought this sounded very positive. The patient voice would be heard and their choices would be respected.

But after I read the paper I felt uneasy and unconvinced that this whole plan would be good for patients. The example used to demonstrate the point was 'Susan'. She's 78, has a family history of breast cancer and a heart condition. After a mastectomy which showed clear evidence of breast cancer she talks to a friend who did not have surgery. She elected to slow the cancer with hormones. Susan is sad, and had she but known of the 'no treatment' option would have chosen it. This is called 'preference misdiagnosis' and of course no one knows how prevalent it is because it would be hard to measure.

breast cancer from

The suggestion in the paper is that the doctors of the NHS should be better informed about patients preferences in a general way through surveys and should  present all of the options.

The power that doctors have is very subtle. If my Dr. recommended treatment vs. no treatment and gave me the odds that would inform my choice I would  listen carefully. But the doctor has power in the presentation. We pick up cues in person to person exchanges. The suggestion of no treatment can easily be taken as a recommendation, and we can't all ask our doctors "What would you suggest for your mother?"

It's easy for the patient to tell what response is most desired and to be influenced by the choices the doctor presents. The aim is "Giving the patients what they would want if they were fully informed" But the underlying idea that this is an opportunity for the NHS to save billions of pounds seems as though it should be out of place in a discussion about patient preference.

Julie's opinion:
I have read this ridiculous article before and wondered what word games they were playing.  It sounded to me like they were encouraging people Not to seek professional healthcare and that the patient's "personal preference" should be for the good of the general economy - not the patient.  The conclusions are ridiculous in my opinion.

Gail's opinion

"I really think it’s vitally important that doctors do give us all the information so that we can be involved in the treatment choices. I would never, for example, blindly let a GP/Consultant prescribe me a course of treatment without at least doing my own research and knowing all the ins and outs first. I think part of this is about doctors realizing that our say in our treatment is vitally important, and ensuring we have all the medical knowledge we need to understand why a treatment might be the best for us, not just to be told that they are going to do this and that’s all there is to it.
We need all the options, not just the cheapest or easiest for them to accomplish."

The final point the article made was about the pluses of  getting patients involved, particularly the one that if patients knew all the choices they would be less inclined to have aggressive treatment and the NHS in the UK would save a bundle of money.

They imagine lots of people in their 70s and 80s saying "No surgery, radiation, chemo etc for me. I'll likely die of something else first""

My friend's mom is an equivocal example: For her it worked fine - she is a notable exception. Breast cancer at 83. Dr did lumpectomy - told daughter it was malignant but in view of her age he would not suggest radiation or chemo. He told his patient (her mom) they got it all. The Mom thought she ducked it and did not believe it when her daughter said it was malignant.

Now, 20 years later, she is 103 and still lives on her own. Lucky it was a very slow growing cancer and the lie to the patient had no ill effects.


  1. Hi Annette,

    I haven't read the paper, but I'm a little confused about why suggesting "no treatment" is a bad option. If Susan were given the options of surgery versus no surgery+hormones, I'm not sure why the second is a bad option. For instance, I know from a biopsy that I have LCIS, which increases the future risk of breast cancer. I know a friend with BC who has gone through chemo and surgery, and will soon go through radiation and I wonder if having all three treatments is a good option for me. I was told by an oncologist not to have radiation in view of my autoimmune issues as it would wipe out what was left of my immune system. I sometimes wonder if I ended up with malignant BC whether I would just opt for surgery alone as the chemo+surgery+radiation sounds so awful. However, I can't imagine many doctors promoting the first option.

    I guess I'm just confused by your post and the comments why no surgery + hormones is a bad treatment. Or maybe the comments refer to something else in the article and I need to read it. :)


    1. I guess I'm saying, as you said, it's all in the presentation. If I were told the odds of one versus the odds of the other, surely that's preferable than not knowing the options. Of course remarks in the paper about saving money on aggressive treatment is reprehensible if they indeed advocate only talking about the money-saving option of not suggesting it. :)

    2. I'm sure there are many people who may choose not to be treated if they are fully informed about every option. My friend's mom did just fine with no treatment. It's just such a fine line when you are a professional advising people. It's usually quite possible to know what the expected or desired answer is and in a situation with a power imbalance, it's easy to be influenced by that knowledge.
      Even though I often feel that I am empowered patient I don't always respond in the best way to protect my own interests.
      The part I disliked most was the monetary aspect. That should not be the main reason that certain treatments are proposed over others that may be better.

    3. Agreed - treatment should never come down to money, but I have a feeling we'll see that increasingly as the health system costs explode. :(