Science & Medicine

The Empowered Patient- January

by Michael Goldstein, M.D.

Engaging in Informed Decisions.

In my last MPN Forum column,  I wrote about the value of keeping our own personal health records, and the ways in which when we can use tools available online to record our medical history, lab and treatments. For me, this has been an extremely useful way to keep track of my response to treatments and help me to have productive conversations with my oncologist about my care.

This month I would like to share another way we can take an active role in health care; making informed decisions about our care. Because we have an MPN, our doctors ask us to proceed with decisions about evaluation and treatment often, yet how many of you believe you have fully participated in these decisions? My guess is that many of you haven’t been very involved in these decisions, but not because you didn’t want to. Unfortunately, even though most of us prefer involvement in assessment and treatment decisions, our docs don’t often invite us in.

Clinician-patient communication researchers have identified several “essential elements” of an informed or shared decision-making process. The elements are: 1) defining or explaining a condition or problem; 2) presenting options; 3) discussing the pros and cons of the key options;  4) eliciting and discussing the patient’s values and preferences; 5) reviewing the patient’s capacity and confidence to follow through with a decision;  6) offering additional knowledge and making recommendations when desired; 7) checking patient understanding;  8) making or explicitly deferring a decision; and 9) arranging follow-up.

Think about the last time your doctor recommended a complete blood count (CBC), a bone marrow biopsy, or recommended a shift in treatment. How many of the essential elements of a shared decision were met for that decision? Research studies have found that less than 10% of decisions in health care meet all the criteria of informed decision making.  Most decisions are made with fewer than half of these steps, and only the first step, defining or explaining the nature of the condition or problem was present in more than 7 out every 10 visits.  

Of course, one may argue that it is not necessary, nor important, to have a fully informed decision about performing a CBC, given this test’s very low risk and high value as a strategy for monitoring the course of MPNs. Undergoing a bone marrow biopsy (BMB) is more risky, and the value of this test depends on where one is in the course of the disease and it’s treatment.

Because it is technically a procedure, most clinics or hospitals require that clinicians obtain “informed consent” prior to a BMB. Yet, often this requirement is commonly met by having a patient simply sign a preprinted consent form, with little or no true discussion or involvement of the patient in the decision. The consequences of not having a fully informed decision about a BMB are limited, however, as it is rare to have a serious adverse event from a BMB. On the other hand, starting treatment with medication, such as interferon, is a lot riskier, as a significant proportion of patients will experience severe side effects or a problematic drug interaction.

It is unethical, in my opinion, for a physician to fail to engage in shared decision-making when starting a potentially risky drug.  Moreover, failure to involve a patient in the decision to start a new medication is associated with an increased likelihood that the patient will not take the medication as prescribed.

 I must say that I don’t fault patients for not taking medication when their doctors don’t engage them in the decision to start it. In previous columns, I have encouraged folks to speak up when doctors don’t offer them the opportunity to participate in treatment decisions.  Research has actually shown that better outcomes are achieved when patients are more activated and assertive and ask more questions about their condition and treatment.

Shared decision-making is perhaps most useful when there is uncertainty about the best course of treatment. When scientific evidence is limited or equivocal, patient preferences and values (not the doctor’s preferences and values) should be the determining factor in the decision among available treatment options.

For example, in my own case, after a year of frequent phlebotomies for my newly diagnosed PV, I became extremely iron deficient, and experienced significant fatigue, mental sluggishness and muscle weakness. My oncologist was fine with this, preferring to continue treating me with phlebotomies rather than switching me to a cytoreduction therapy, such as hydoxyurea or interferon. It was only after I did a literature search and showed him the evidence linking iron deficiency to significant cognitive impairment that he consented to treat me with hydroxyurea.

The high value I placed on restoring my thinking capacity and work productivity trumped the risks of starting a treatment that had some short term and possibly long-term risk. Luckily, I had a physician who respected me enough (I had an advantage in this regard as a physician myself) to allow me to participate in, and even take the reins of the decision-making process. I encourage you to find a physician who will ask you about your preferences, offer you options and provide you with ways to learn more about the pros and cons of the various options available. 

It is regrettable that many, if not most physicians, do not provide us with the information we need to make informed decisions, nor spend enough time with us to learn about our experiences, feelings, values and preferences.

We need both unbiased information and time for reflection and processing if we are to make good quality decisions about screening tests or treatments. Some health care systems have developed resources and tools to help their patients and clinicians engage in shared decision making. For more information on informed decision making see the Foundation for Medical Decision Making’s website:

I am curious to know whether members of our MPN community have been engaged in the process of informed medical decision making and how this may have impacted your ability to make good health decisions. Please share your experiences, ideas and comments here.
Take me back to the Contents

© Michael Goldstein and, 2011. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Michael Goldstein and with appropriate and specific direction to the original content.

Comments on: "The Empowered Patient- January" (4)

  1. Mariel,

    I am dismayed to hear of your experiences with your local hematologists. You should not have to be a broker among your physicians or communicate for them. It is also
    unconscionable for any to label you as abusive simply because you expressed your needs or raised concerns about treatments. The treatment is YOUR treatment, not the physician’s treatment. YOU make the decision to follow recommendations or prescriptions.

    I hope you will not become discouraged and will continue to advocate for yourself so your prefererences are addressed and your needs met.

    Sounds like you need someone local to follow through with Mayo’s recommendations. Perhaps Mayo has some suggestions for hematologists/oncologists in a nearby community?


  2. I am similar to Kathy in that I have two MPN diseases, the same ones she has. I too have been “disempowered” for refusing to take AG….Right now I’m in a terrible limbo because my doctors at Mayo (near Kathy) want me to take p32 but the local heme refuses to think it necessary. Tomorrow I see the pcp, who is helpless in this debacle, but since my counts are l,483,000 today, I may need to plead with Mayo to give me the p32 anyway. It was approved by insurance last year. I feel weak and helpless going against the wishes of my local heme, and I do not even know if they will take me under the circumstances, for this treatment. I have no advocate–I am a widow, and my son will not allow even one word of discussion about my illnesses….I am preparing to die of a stroke, although I have not had one yet. I need God’s message of what to do.

    Kathy and I are both irish girls, too. I had my 23andme haplogroup typed this year, and I am J1c2b, which is more common in Ireland than elsewhere in Europe, and hails from ancient Israel or ancient Arabia–which, as the Bible tells us, is exactly the way it was.

    I have raised my voice, but I find tremendous resentment because I do so. Years ago I was literally thrown out of the closest heme office for not taking AG and I have a black mark on my record saying I “abused” the staff and cannot return, even though there will be a new hematologist next month. I am stuck in limbo.

    Mariel PV MGUS Porphyria

  3. Kathy Van Meter said:

    I have been “empowered” pretty much all of my life. My mother believed that we, as owners of our bodies should have a major say in what happened to us. I went on to become a medical social worker and found little respect from the medical community, you know, that whole “she’s the touchy feely person you talk to after we docs give you the bad news”, and she sets up services that might be available for you. I almost always had to fight to be a full fledged member of a medical team.

    To answer Michael’s question, I think I pretty much call the shots for my treatment with the support of my of heme-onc. And I research like crazy. I see 2 docs at Mayo for I have the extreme good fortune of having 2 blood cancers and specialization is the name of the game. I was first on HU and had an ankle ulcer after one year of treatment.Was dx’d as osteomyelitis, took 9 mos to heal at a wound clinic and almost resulted in amputation. I took myself off HU and refused to go back on it. I was then offered AG……tiny little problem, irregular heart beat requiring meds, refused the drug based on research and was documented as refusing treatment (notes were later amended). Was told that despite the apparent success of Peg, my insurance was not likely to cover it so I waited for a much hyped trial that did not happen and finally did the “duh” what have I got to lose in trying for approval. Gathered all my peer reviewed studies, doc was ready to fight the good fight, and guess what………no problem with insurance. 2 years this month on Peg, went from 180mcg to 90 mcg 4 mos ago, so far so good. Looks like Mom was right.

    • Kathy,

      Thanks so much for your comments. It is awful that you were not treated with respect by other members of the medical team. I was lucky enough to train in Rochester, NY, where medical social workers were an integral part of the team. We rounded with social workers regularly and attended family conferences together. And…I married one of them.

      It is unfortunate that you had to fight as much as you did to insure that you received the right treatments. As a health care professional, you have had the opportunity to acquire knowledge and skills needed to effectively review relevant research and clinical literature, seek out additional expertise, and advocate to participate in key treatment decisions. Most patients aren’t as fortunate as you and I. They don’t have the training or expertise to enable them to take an informed and active role. I believe that we, as health care professionals, have a responsibility to actively help our patients develop expertise and skills. We also must encourage them to take a more active role in decisions. We need to help them to learn how to read research studies, be more assertive and link with resources and support groups (like MPN Forum). That is one of the reasons I am writing this column.

      Thanks again for sharing, and raising your voice…and your mom’s!

      Best wishes, Michael

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