by Michael Goldstein, M.D.
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: http://www.informedmedicaldecisions.org/.
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.
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© Michael Goldstein and MPNforum.com, 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 MPNforum.com with appropriate and specific direction to the original content.