Elaine Moore's Rebuttal to Sara Rosenthal
Tuesday September 5, 2006
In the above-mentioned article, Sara Rosenthal claims that a number of patient advocacy books present what she calls "misinformation" about radioactive iodine (RAI) treatment. One writer singled out for Rosenthal's attack is patient advocate and author Elaine Moore, author of Graves' Disease: A Practical Guide. Elaine, a dedicated patient advocate and Graves' disease patient herself, wrote to me today to share a letter she just sent to Sara Rosenthal. Elaine Moore is rightfully questioning Rosenthal’s misrepresentation of the information presented in Graves Disease: A Practical Guide, and the inaccuracies evident in Rosenthal’s article.
Dear Sara,I read your article on patient misconceptions in which you inaccurately cite me as saying “Some patient advocacy literature asserts that hypothyroidism after RAI is evidence of harm.”
Nowhere do I use the term “evidence of harm” because as we both know hypothyroidism is an expected consequence of radioiodine ablation. For many people, like me, the hypothyroidism and associated symptoms including cardiac problems, are far worse than hyperthyroidism. Also, it is inaccurate to compare hypothyroidism caused by the high doses of radioiodine used in cancer patients to the hypothyroidism caused by the ablative doses used for ablation in patients with hyperthyroidism. The long-term follow up study by Elaine Ron’s which lists the cancers that are significantly increased after radioiodine, which is considered the most thorough study of these effects, was also curiously ommitted from your resources.Additional Note -- Rosenthal's Telling Error: Footnote #15 in Rosenthal's article is one example of the general carelessness of this article, and Rosenthal's unfamiliarity with the sources she is criticizing. Rosenthal's footnote states that Elaine Moore's website is at http://www.elainemoore.com, and states that the site was "accessed December 19, 2005." The site Rosenthal has footnoted, however, belongs to a children's book writer. (The site Rosenthal has incorrectly listed is currently not "unavailable" and appears to have been taken offline in Spring of 2005. The Internet Way Back Machine shows what the site last looked like.) Thyroid patient advocate and writer Elaine Moore, the person Rosenthal is referring to -- and whose work Rosenthal herself has recently published -- has a web site actually located at http://www.elaine-moore.com.Because of this error I have to wonder how many other facts in your article are incorrect. You do a disservice to your readers when you paint a somewhat cloudy picture to get your point across. I expect the journal will be seeing more than one Letters To The Editor regarding this article.
Sincerely,
Elaine Moore
Comments
The fact of the matter is, “patient advocacy literature” (websites, books, whatever) exists because some proportion of patients GET INCORRECT INFO FROM THEIR DOCTORS! Perhaps Sara Rosenthal ought to figure out why some M.D.s are providing poor-quality care, rather than criticizing advocacy literature.
Patronizing Patients: Misconceptions and Ethical Challenges: An Open Letter to M. Sara Rosenthal
Dear Ms. Rosenthal,
I have read your article in the Journal of Nuclear Medicine Technology and have some questions and comments. I assume you wrote it without the assistance of a ghost writer, so hope that this will be a direct communication from reader to writer.
First, I’d like to say something positive about the article. The second part of your article, beginning with “Ethical Principles Involved in RAI Scanning and Treatment”, is reasonable and pretty well stated. The list in the section, “Informed Consent and RAI Therapy”, based on McCullough and Chervenak’s work , at least as far as the first sentence of each admonition, is something which I cannot criticize negatively. The tenets of this list have been endorsed by peer-to-peer, unfunded online self help groups on the Internet since they were started. So, thank you for clearly articulating the basic list for physicians.
Some of the comments within this list are debatable, however, and they usually are tacked on after the first sentence and reflect your personal opinions without factual argument. I’m not sure I care to debate each point here.
Usually, articles in professional journals start out with a clear, cogent abstract of objectives; go to a presentation of factual material and argument; and then draw conclusions based point by point on those arguments and facts. Your article confused me, as I did not see that clear relationship in its construction.
You first discuss “patient misconceptions” which you state are the result of “self-education” online. You then admonish physicians, presumably those in the field nuclear medicine (although this is not entirely clear) to adhere to the very same ethical standards urged by those online peer groups.
What I think you have done in constructing this article is to have juxtaposed two sets of conclusions, unlinked in any clear way, and unsupported by factual argument. Even the conclusions which I agree with are not actually supported by the arguments (actually conclusions) in the first part of the article. Your copious citations are often simply source citations, without support for any of the conclusions you have drawn. Many of the remarks about patients are gross generalizations or worse, implied criticisms which go unexplained. This includes quotes from websites, some of which are obviously tongue-in-cheek humor, which are not cogently debated. This is unworthy of someone who has made a career from writing twenty five books on various medical conditions directed at patients for “self-education” purposes.
Since many patients online have read your article, I am going to leave it up to someone else (possibly many) to address the illogical statements made in the section titled, “Origins of Patient Education Misinformation.” I’d like to address the patronizing tone of your article.
Bashing patients is a sure crowd pleaser at medical conferences and in journal articles. It doesn’t really have any positive effect on improving communication between patient and physician, however. It serves no purpose other than to feed the arrogance of some in the medical field. It just makes things worse.
Would you please define “literacy” as you are using it in this article? There are two possible definitions. Ability to read and write is the most likely definition, as specialized literacy is generally prefaced. Computer literacy, scientific literacy, medical literacy, and cultural literacy are examples of specialized literacy.
You have made several statements about patient literacy in this article:
You list “patient literacy” in the Abstract as one of the factors which “can create serious barriers to genuine informed consent…”
You state that, “It is clear that for patients with low levels of literacy and education, grasping concepts such as ‘isotope’ and ‘half-life’ and some understanding of thyroid function are critical for there to be genuine informed consent.”
You state, “Issues of justice, however, become entangled with literacy and education.”
“Indeed, the ability to make an informed decision is directly related to a person’s literacy skills and educational levels. Literacy and privilege have become entangled with informed consent.”
You mention it again in the section titled, “Socioeconomic Barriers to Informed Consent”
My favorite rather snide reference to literacy is the “wink, wink, nudge, nudge” reference to a website somewhere (source not cited) in which the word, “iatrogenic” is misspelled, implying that someone who actually knows that word, how it sounds, and what it means, is somehow ignorant in general!
Ms. Rosenthal, I respectfully submit that each and every patient who participates in online self-help groups and websites is literate! They’d have to be to access information online and in books.
If, by literacy you actually mean educational level, it is obvious that people with all levels of education frequent online self-help and support groups. I have even noticed that a couple of nuclear physicists with Graves’ Disease have participated. There are also participants from non-English speaking countries who are literate in several languages. Educational level is not necessarily a measure of intelligence; neither is ability to spell English words!
Furthermore, while the standard of ethical responsibility is lower for volunteers who receive no payment for their services than it is for physicians, I have observed that online groups present the three possible therapies for Graves’ Disease and hyperthyroidism; give as much information about these therapies as they can; provide other sources of information; display respect for individuals; and do not ever suggest that people with thyroid cancer not consider RAI as a therapy. The unpaid online groups do not censor debate. They are open to learn. They do not ban participation if someone chooses to accept RAI as their therapeutic choice and they share strategies for coping with the side effects. They are eager for the medical profession to get serious about research and improvement in both patient communication and protocols for therapy of thyroid conditions.
I would make some positive suggestions for you and other “researchers” who gather material for publication in online support lists and/or websites:
1. Announce your presence and state your business. Do not lurk. Give something back for what you get — if you feel you have superior knowledge and understanding, share it. Enter into debate.
2. Consider going into the message archives and counting the thousands of accounts of adverse reactions to RAI therapy. Do not assume that patients do not know what they are experiencing. It is impossible that so many people could all be imagining the same symptoms. Gather the statistics. Create a hypothesis. Test it scientifically.
3. Set up online surveys and questionnaires to further gather statistics. Don’t simply profit from the work of others.
4. Count the numbers of accounts of physician abuse of power in patient encounters. Use this to form the factual basis on which to counsel physicians about ethical standards of care.
5. If you are a physician, consider saying, “No thanks” to offers of catered lunches for the office staff from pharmaceutical reps and catch up on your serious journal reading while eating a bag lunch from home.
Okay, that last point was tongue-in-cheek. I feel I must point that out, lest I be criticized for trying to make a point using a little “pointed” humor to lighten the mood of this letter.
Honestly, I am not writing this for any purpose other than to try to let the medical and academic community know that patients are people. We are tired of being cast into stereotypes and we are tired of being patronized. We feel empowered by knowledge. We even read articles in Medical Journals!
We want you to respect us and to treat us ethically. We want you to work with us, not against us.
Redhen
I was diagnosed with Graves Disease in 1999, and the doctor I had at the main hospital suggested RAI. Then I had no regrets with RAI until my doctor of fifteen was transferring to another state. My doctor referred me to one of her partners and that was the beginning of my troubles. I complained about various symptoms (i.e fatigue, trouble sleeping, etc.) her only response was you need to “exercise and loss weight”. This doctor was considered to be a family doctor. I decided to see a endocrinologist; this doctor confirmed that my TSH level was extremely high. We went through the normal process of the dosage change but I still suffered the same symptoms: fatigue,trouble sleeping,etc… Finally, a friend suggest another doctor to see; which happen to be a family doctor. After, my initial visit she had her staff calling me with urgency that my dosage was to high this was at least year ago, and now I’m doing and feeling better. If there were more doctors like my doctor of 15 years and current doctor who take more time out to listen to there patients. There are so many debates over RAI, thyroid patients should see specialist (endorinologist) rather than regular doctor. Some of the decisions I have made came from the websites, online self-help. These tools have helped me understand my condition more and better way to approach my doctor with questions and concerns. These sites help you clearly understand that there other people out there with the diagnosis and allows you not feel like your crazy. There are doctors who would rather say patients with a lot of complaints are nothing but hypocondriacs. The feel as doctors they are always right and really that’s not the case; they to should have the mind set that in there fields there are things still to be learned; i.e. listening to the patients and getting rid of those egos.
As a rebuttal to Ms. Rosenthal statement “patients who are inqdeuately counseled about RAI…will self-educate about RAI, relying on patient-generated books and Web sites to “translate” the medical literature for them” I disagree when I made the decision to do RAI my doctor suggested the go online and read what the American Thyroid Association had to say about RAI.
I visited a doctor covered by my insurance and after tests she told me I was hypothyroid. She went on to say there was no cure and that I would be on medication for the rest of my life. I decided to see my doctor of 20 years(not covered by my insurance) who after test results told me to go to an online web site (Mary Shomon)and educate myself on the condition. I have been taking Armour ever since under her supervision and I feel wonderful. I will continue to read and be informed through web sites such as this.