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» redhen - Patronizing Patients...An Open Letter to M. Sara Rosenthal

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

-- posted by redhen

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» Elaine Moore - Patronizing Patients...An Open Letter to M. Sara Rosenthal

In response to Patronizing Patients...An Open Letter to M. Sara Rosenthal posted by redhen:
Red,
Thanks for sharing your reply to Ms Rosenthal whose recent article, Patient Misconceptions and Ethical Challenges in Radioactive Iodine Scanning and Therapy published in the Journal of Nuclear Medicine Technology, Volume 34, Number 3, 2006: 143-150 sparked a flurry of online discussions opposing her views.
Although her article singled out thyroid patients, patients with various medical conditions have responded and disagree with her views on patient education. Thanks again, Elaine

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