Talking About Health; Why Health Communication Matters

Health communication about medical test sensitivity: The TSH and CA 125 blood tests example

July 23, 2012

Doctors often recommend blood tests to help them diagnose our condition or to check our health status. For example, I have an underactive thyroid condition. As discussed in my book ‘Talking about health’ — my ‘normal’ numbers fall outside the range of a healthy ‘normal’ [see for a discussion http://www.denvernaturopathic.com/news/TSH.html]. I was diagnosed with this condition in my 20s and have taken daily medication to address it since that time. My mother was diagnosed with the condition in her 20s as well. I go to see my internist annually, and he puts in an order for a TSH [thyroid stimulating hormone] test [http://www.endocrinology-online.com/Content/For%20Patients/TSH.htm] that I go to the lab for several weeks before my scheduled appointment. This test is considered to be very sensitive–but what does that mean? It is the probability that a person having a disease will be correctly identified by a clinical test. However, a careful reading of the article at the link shows that the results may depend on the time off day you were tested–a reason why the test is given in the morning after fasting.

But aren’t all medical tests highly sensitive? Otherwise, why do them?

The answer to the latter is ‘because that is the best that can be done’. The answer to former is ‘no’.

Take the CA 125 test, for example. The test was hoped to be a valid indicator of ovarian cancer. However, the test indicates the presence of other disease as well. So a positive CA 125 test validly indicates the presence of ovarian cancer sometimes but often does not:

“The result of a Ca-125 test is interpretable only by considering the context in which it was ordered. When you order a Ca-125 test you will have to estimate your patient’s risk for having ovarian cancer. If your patient can be put in a group in which the likelihood of cancer is high then a positive test is probably correct and a negative test wrong. If your patient can be placed in a low risk group then the positive test is probably wrong and the negative test meaningless. Furthermore, there is no way to evaluate a positive test. You can repeat the test and pick the best 2 out of 3; 3 out of 5; 4 out of 7, etc. Otherwise, she will be heading for surgery” [http://www.gynoncology.com/ca-125/].

So if your doctor orders a CA 125 test, remember that the results should be discussed. This is true of all medical tests.But when a test that has been ordered is not highly sensitive, it is really important to discuss the meaing of the test result. If the test comes back positive and is not highly sensitive, have a conversation and ask: ‘What’s next to rule in or rule out the condition you were testing for?’ AND ‘What other conditions could the positive test result suggest I may have? How will we rule out whether I do or do not have them?’

Are you fearful of being labeled ‘difficult’?

June 12, 2012

I am trying to imagine how my medical doctors perceive me. I tend to ask a lot of questions. I even bring — surprise surprise — information to an appointment and want to discuss it. I find that asking questions and sharing information leads my doctors to use vocabulary with me that I don’t understand and have to ask to have explained. And I am OK with that. But I cannot remember a time when I worried that my doctor, or my childrens’ doctors, or doctors treating my husband would label me ‘difficult’ because I asked lots of questions. But others do have these concerns.

A study published in Health Affairs conducted by Dominick Frosch and collaborators used focus group discussions to learn what barriers limited efforts to share decision-making with their doctors. They learned that participants wanted to be more involved in considering treatment and care options, but concerns that doctors would label them ‘difficult’ kept them from doing so. This suggests to me that doctors may need to make more explicit efforts to invite participation in shared decision-making, thus reducing the perception that participation will make an unfavorable impression.

Read more at: http://content.healthaffairs.org/content/31/5/1030

Who told me about glutein for eye health?

May25, 2012

After a brief hiatus to complete those piles of undone tasks [which are still not all complete but I’m making progress!], I wanted to share how communicating about health in my family may have helped my vision. I use ‘may’ because it appears to be the case, but I am not a medical doctor and can only tell you my personal experience–with a focus on how talking about health worked in this case.

First, setting the stage, I have low vision. For those of you who have low vvision, you know what this means. For others, it means that limits related to my ability to see are significant. For example, I cannot drive… I see a low vision specialist at least every six months and more often if I feel the need based on some symptom. At any rate, in addition to impaired peripheral sight in both eyes and practically no vision in the left eye, at the last visit–my low vision doctor announced that a cataract had begun to develop. And it was in my so called ‘good’ eye. When I told my parents, my dad asked me if I was taking Lutein. He takes it for his vision. So this family conversation started me on a path.

I looked online at google scholar and found quite a few published scientific articles about cataracts and lutein. Here is a link to one example: http://www.nutritionjrnl.com/article/S0899-9007(02)00861-4/abstract I went to Wal Mart and found lutein in the 20 mg size with zeaxanthin…which some studies specifically mentioned as being important with lutein. I took it 3 or more times each week. And this week, my visual acuity was significantly improved and the start of the cataract waas reversed…not there. Hmm. Sure am glad I talked to my dad…

Interestingly, the doctor wanted to know what I was doing differently because the change was a positive and clinically significant one. I told her. And she said, ‘the National Eye Institute at the National Institutes of Health have found that taking lutein improves eyesight…” She went on with more details but I was lost in the thought that ‘she knew this but she didn’t tell me. My dad told me…’ I have several follow-up questions for the doctor but did not ask them at the time. Why didn’t she tell me? Did she doubt the results? Did she think I wouldn’t take the supplement? She could’ve advised me to eat more fruits and vegetables with the lutein and zeaxanthin. I do eat a lot of these though and probably wouldn’t have changed my eating habits. Brussel sprouts is included in this list, as well as some others. See http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1722697/

But in the end, she didn’t say anything. I sure am glad my dad did…

Personal control… the ups and downs as illustrated by Dr. Oz advice

April 4, 2012

In the research I discussed in my last post, I noted that there are different styles, so to speak, for predicting how we might want to communicate about our health. The personal control folks believe that their personal behaviors determine how genes relate to health. The participants who fit this style did not want to much communicate about their health. In fact, they were least likely to want to talk about their conditions. Perhaps they believe they have everything under ‘their control’. But what if not talking means that they miss a chance to prevent a poor health outcome?

Here is an example. On Dr. Oz today, he was giving advice about reducing fat in various parts of the body. He advised in one case to use red clover tea. He did not add that it should NOT be used if you are taking Coumadin/Warfarin–a blood-thinning medication. It interacts with the medication and can cause excessive bleeding. Someone in the facebook exchange about the advice noted this important fact.

Others noted that no one should take anything suggested by Dr. Oz without first consulting a physician. And so, the idea of personal control does not mean we should NOT talk about our health. In fact, in trying to have control over our health, we need to be sure that the advice we think makes sense for us fits based on our pesonal health history and current medications and therapies.

What ‘style’ would you be?

Maarch 29, 2012

That is the question posed in one story about some recently completed published research. Science Daily reported about the research on March 12th [see http://www.sciencedaily.com/releases/2012/03/120312114119.htm]. The report describes the finding that there are four ways of looking at how genes affect our health in the U.S. population that are rather equally distributed. For some, their beliefs form around how personal behaviors relate to whether genes affect out health, whether our social environments have any effect, and whether religious faith and spirituality play a role. For others, their beliefs form around confidence that our personal behaviors predict whether our genes will affect our health. For a third group, they convey uncertainty about how genes affect our health, neither agreeing nor disagreeing that personal behavior, social environments, or spirituality plays a role. Finally, a fourth group is quite confident that our genes are our genes, and how they affect our health has nothing to do with our personal behavior, our social environments, nor our spirituality.

It is the finding that we vary in our beliefs that led one reporter to talk about it in terms of our ‘style’ [see http://www.communicationstudies.com/matching-communicaton-styles-to-patients-beliefs-study]. I’ll talk about how that might be a good ‘fit’ for thinking about communication and health over the next few days.

A stark reminder to check your prescriptions…closely

March 8, 2012

I heard the story about a pharmacy mix-up the other day that reminded me how important it is to inspect my medications closely before taking them. As the clip shows, a medication was given that looked the same in color and size, but very much was not the same. A cancer drug instead of fluoride tablets.

I found an error once. The pill was a different color than my prescription but the same size. So I looked closer and it wasn’t my medication. You can check your prescription by going to http://www.drugs.com/imprints.php and enter the number on your pill to be sure that it is what was prescribed according to the label.

‘AfterShock’–Jessie Gruman’s book….giveaway

February 27, 2012

I’ve enjoyed reading Jessie Gruman’s book. Not because the topic is one I enjoyed. It is about ‘what to do when the doctor gives you — or someone you love — a devastating diagnosis’. I like this book because it uses published research to reach concrete suggestions. Even the appendices are loaded with specific ideas about things to do. Things like ‘how do I start my doctor search?’ and ‘choosing a doctor’. The latter has a list of questions, including ‘does the doctor have the right expertise?’ and ‘does the doctor particpate in your insurance plan?’ and ‘at what hospital does the doctor have privileges?’

For anyone who hasn’t read the book and might like to, I am once again attempting to offer some of my library to others. Just let me know in the comment section that you are interested. I will randomly pick someone and follow up to get your information to mail it to you…

Here is what the reviews on Amazon.com have to say about the book:

http://www.amazon.com/AfterShock-You-Love-Devastating-Diagnosis/product-reviews/B001H31NIC/ref=dp_top_cm_cr_acr_txt?ie=UTF8&showViewpoints=1

The magazine…Baby Talk… and the topic–childbirth classes

February 4, 2012

April 1982, my friend had an article about the birth of her twins in baby talk: THE FIRST BABY MAGAZINE where she described her experience and mentions me, her “second childbirth coach, a close friend”… Her other coach was her husband. As her labor progressed, my friend tells the story about how the nurse put an I.V. in her arm ‘just in case’ and how her two coaches looked away, leading the nurse to remark, “If you can’t watch this, how do you expect to watch these babies get delivered?” But we did. And the babies were beautiful.

I persist in believing that such classes are beneficial. Here is someone who says just what I would say about how such classes help with the process http://www.parents.com/pregnancy/giving-birth/preparing-for-labor/childbirth-classes/

But here, too, is one of those videos… http://www.parents.com/videos/m/32086618/birthing-101.htm

And another…

One more with Jimmy Kimmel’s spin…

And when the shoe is on the other foot in health communication, so that a patient wants to reject treatment or medication, what then?

Jauary 17, 2012

Sometimes, life really is a race…

Here is my daughter pictured in a skull at the Head of the Charles rowing competition. Looking at it, I am thinking about how our discussion about conscience clauses ignores the other side of the story.

I was reminded of our right to refuse treatment based on our values and morals when I once more searched to find published research about how doctors, especially pharmacists, talk about these issues with patients when it means that a doctor/pharmacist is not going to provide medication or treatment.

Orr and Jensen conclude in the Journal of Medical Ethics,

“How should the clinician respond when a patient or family requests “inappropriate” treatment based on religious beliefs? As in all situations where there is disagreement about treatment options, good communication is the most important step towards resolution. The patient or family must clearly understand the medical situation. This may require repeated discussion, conversations with consultants,viewing of x-rays or other clinical data, or other efforts familiar to most clinicians. A management conference, which includes the patient/family, primary physician, consultants, bedside nurses and others from the care-team, is often the best way to ensure that such communication happens.” (1993, p. 145; http://jme.bmj.com/content/23/3/142.full.pdf+html)

The article’s title? “Requests for “inappropriate” treatment based on religious beliefs.”

I think the suggested course of communication in the decision-making scenario is a great model for how to talk about decisions when the shoe is on the other foot, so to speak…and the focus is conscience clauses and the provider’s religious beliefs.

What might happen when a pharmacist uses a conscience clause?

January 16, 2012

A conscience clause — when might a pharmacist feel conflicted about filling a prescription? The most commonly discussed event is birth control. Birth control pills, the morning after pill… these medications cause feelings of conflict between values related to pro-life and anti-abortion, and dispensing the medications.

The store, Target, supports a pharmacist’s rights not to fill these prescriptions. However, a pharmacist must direct a consumer to another Target store where the prescription can be filled. I can find no research that has been done to see how such conversations might take place or what happens when — as in the town where I live — there is one Target store. I don’t know if there is more than one pharmacist there. I don’t know if any of them object to filling these prescriptions. But if they do, what happens? How would I know? Who would tell me?