Keeping secrets

Everyone keeps secrets - like how much I weigh. That is known to me, the scale, and my doctor's office. Its no one's business but mine and, truth be told, I really do not like the number but that's another story. There are other instances where keeping secrets is okay. Like a secret family recipe. Or a medical history.

These secrets are just information we want to keep private for whatever reason. It is fine that they are kept private and not shared indiscriminately.

Then there is the issue of secrets vs. transparency. This is when secrets are kept between groups where they should not be. Transparency is important between groups so that honesty leads and there can be understanding and appreciation of the other side. Without transparency, dishonesty can be suspected and with suspicion comes distrust. Which leads to bias and anger.

A big area where there is no transparency is in drug pricing. The pharmaceutical industry has a problem with this. Yesterday (was it yesterday or the day before?) I blogged about that 'gentleman' who jacked up the pricing of an existing drug for no given reason.

And for an industry already struggling with an image problem over the rising costs of prescription drugs, companies are going to have a hard time distancing themselves from one of the most controversial men in America.

The reason is a lack of transparency. Drug makers do not really want to explain how medicines are priced and, as a result, they have adopted an air of secrecy in which one cowboy can create havoc for an entire industry.

“The [Shkreli] episode is really an extreme manifestation of an attitude that has taken over the industry,” said Bernard Munos, a former corporate strategy adviser at Eli Lilly who is now a senior fellow at FasterCures, a medical research think tank. Most drug companies “are not raising prices by 5,000 percent, but large prices will leave patients with the same impression.”

It’s certainly true that funding drug discovery is expensive. The latest estimate of what it costs to get a drug out the door is, on average, $2.6 billion, according to a 2014 Tufts University report that was funded in part by industry.

Yet pharma leaders have done a poor job of explaining how the cost of R&D translates into a need for climbing prices or the sky-high sticker prices that are commonly set for new medicines from the get-go. Rather than opening their books, drug makers continually repeat the refrain about increasing development costs, and they avoid any candid discussions about cost that may invite more interest in setting price controls.

This is not a good thing. We need transparency to prevent more 'greed based' actions. Honesty and its partner transparency should rule. Secrecy and suspicion should be

An ethical dilemma

I am an honest person. I hate coercement. I am feeling pressured to do something that I believe is wrong.

Here is the dilemma. I ordered a gift for my nephew on Amazon from an Amazon market place seller. It arrived broken - wires were not connected  - not that it was smashed in transit. My brother tried to fix it. My nephew really liked it. They gave it back to me.

I was asked by Amazon to review my order and I gave it one star and said I was returning it because it didn't work.

I filed a claim with the seller who didn't respond in the three to five days or whatever time frame Amazon specifies. So I upgraded it to a complaint at Amazon where I received a quick reply and a promise to refund my money if I don't hear from the seller.

Yesterday when I came home from work I had an email telling me to modify my rating. Then I received a phone call telling me once I modify my rating they will give me a refund and I do not need to return the product. However they cannot issue a refund while feedback is present. And they did not leave their name.

So they want me to remove the negative rating and will issue me a refund. That way they get to keep a clean record with Amazon - which is important fro sellers because no one wants to buy products from a seller with unresolved issues.

I could just  take a refund from Amazon and ignore them. I could change my review (which I prefer not to do) and get the refund.

What would you do? The honest route is for the seller give me labels to ship back the product and then to issue me a refund.

They really don't know

A few weeks ago I blogged that its really just A Bunch of Numbers on how doctors just give us numbers and that's all they are when we hear statistics about survival, prognosis, age or whatever from our doctors.

Now a doctor says the same thing in this article, A Doctor's Struggle with Numbers.

"Oncologists are notoriously bad at predicting survival, and none of us wants to be known as “the doctor who told me I would be dead by now,” the doctor who made a prediction of imminent demise, sending a family into a terrifying tailspin of goodbyes, only to be proven wrong and subsequently mocked for years to come. One of my patients, upon being told by another doctor that she had two months to live, held Christmas in April so she could spend one last holiday with her grandchildren. She survived to see two more Christmases.

At the same time, we need to be truthful and give guidance to people who want time to prepare, time to write wills and pay off debts, to say goodbyes and to leave instructions, to tie up the loose ends of a life now heavy with meaning.

We try to provide hope, but not false hope.

So we give ranges, starting with the best estimate of survival, because my patients have told me they shut down after they hear the worst estimate. We talk about setting goals, about maximizing quality of life, because we don’t have much leverage with quantity of life. We emphasize spending as much time as possible with family and friends, and as little time as possible with people wearing white coats. We tell them we’re not going to give up if they don’t give up.

But the truth is, we don’t know."

I always appreciate honesty from my doctors. If one of my doctors said to me, instead of giving me a range, something like 'statistics say you have a 10-20% chance of [fill in the blank], but my feeling is that you are on the high end of this due to your medical history'. I would be very appreciative of this little 'translation' or personal input from the doctor.

I can understand the doctor's point. They only have the numbers given to them but quoting statistics learned in medical school does nothing for me. Please add in a little bedside manner for me. Thanks.

Copying Lance

Since Lance can do it, I can too. I will make my full confession.

I take drugs. Yes I do. I take them on a daily basis. I have a large collection of prescription bottles obtained from a variety of sources. I succumb to peer pressure and take them regularly. I have been doing this for years.They might even be consider performance enhancing medications.

There I feel better having confessed.

Now allow me to explain.

I take drugs regularly. I take them on a strict schedule of before breakfast, after breakfast, dinner, time, and as needed for pain and crankiness.

I take drugs that come from several sources - who are all linked by computers and know what I take from each of them.

They also come from several pharmacies who aren't linked but who are all paid by the same evil insurance company which oversees their repayment.

I consider them to be performance enhancing because without them, I would not be able to move around at all, would be in constant pain, and would have no metabolism. With them I am moving faster than if I could without them.

I succumb to peer pressure from doctors, nurses, friends, family members (who are concerned about crankiness) to take my pills regularly.

But there is a difference between Lance and I - mine are all legal and have not been banned through anti doping agencies.

Communication, optimism, and honesty

A recent study at the Dana Farber in Boston (because we needed another study to keep the researchers busy) looked at late stage lung and colon cancer patients and their thoughts on being cured and on their doctor. Two very interesting points were raised:

• "They found that 69 percent of patients with metastatic lung cancer and 81 percent of ­patients with advanced colo­rectal cancer reported that their chemotherapy might be curative, despite the fact that the drugs were extremely unlikely to cure their cancer."
• Patients who thought their doctors were worse communicators were more likely to have a realistic view of the potential benefit of their treatment.

Do patients rate their doctors as better communicators because they provide a more optimistic message? So if the information is more in line with what the patient wants to hear is the doctor considered to be a better communicator? But if the doctor is more honest, the patient considers them a worse communicator because they are being told things they don't want to acknowledge?

A sugar coated doctor appointment isn't really a good thing. I want the truth. I have even been known to pull together every brave little molecule in my body and ask my oncologist what my prognosis is. Sometimes the truth isn't pretty but I think its needed.

I know not everyone is the same as me in wanting to hear the truth and doctors do not necessarily know the patients will react to news. I think they assume have to gauge what they say based on what the patient says. I make sure I ask the direct questions so I get the direct answers in return.

I do not want to have a rosy picture of life if it isn't going to be that way. I can't digest and cope with bad news if its sugar coated. I have to adapt to reality and then learn how to make lemonade with my latest life lemons.

Flab, honesty, and health care costs

First they tell us we can bet fat and fit at the same time. Then they (this is the evil them who secretly rule the world) tell us that as our bodies widen, our health care costs will spiral out of control. Make up your mind will you! I know its an evil conspiracy if they can't kill us, they can confuse us.

I am fat, I admit that. Well I am fatter than I wish I was but my BMI has not hit that evil O level. But I also go to the gym three times a week for 40 minutes of cardio followed by working with weights and other tortures.

I don't think my flabbiness has contributed to additional health ailments - I mean I have enough already. I know being overweight can contribute to all sorts of problems. And as obesity rises in the US, they project  health care costs will bulge to cover them. I can understand that but I question the math behind it.

How did they get the weights of people? They called them and asked them. If someone called you and asked you on the phone your height and weight. Would you tell them the truth? Oh, please.

"The CDC data indicate that the South is the most obese region of the U.S., but that may not be entirely true either, said George Howard, professor of biostatistics at the University of Alabama at Birmingham. No one was weighed or measured in the collecting of the information; people were merely asked about their heights and weights via telephone -- so they could have lied.

Howard speculates that there may be bias in the data because "there's not a social stigma attached to being fat in the South," he said. "If you ask people how fat they are, they tell you."

Correlations between obesity and the South may be tied to other factors, Allison said. Certain ethnic groups, people from rural areas, and people of low socioeconomic status are more likely to be obese than others."

So maybe our obesity rates are tied to our honesty rates as well as our waistlines. Not that we are a nation of liars but have you ever deducted a few pounds or a few years if asked? Why don't we have a real survey where people are weighed and measured.

Do you want the truth?

Do you want the truth from your doctor? Of course we want to hear the truth. BUT. Are we really sure about that? I mean we want our friend to honestly tell us not to buy that dress because it makes you look fat. Or we want the home improvement contractor to give the honest date they will be done with the renovations.

But sometimes a little blurring of the facts can be a welcome respite from reality. The truth may need to come out at appropriate times. If there is an 95% survival rate for a medical ailment, do you really want to know that ahead of time? Or do you want to be told that most people come through it fine? If you are told that number of 95% are you going to fixate on the 5% that don't make it? If you are diagnosed with cancer and the doctor starts running on and on about 5 year survival rates and tells you its only 87%, do you really want to hear that number? Or do you want the doctor to say things like 'we are optimistic about your treatment and most people do quite well with it' Eventually you will find out the survival rates and can absorb them.

I know one woman with her cancer diagnosis, she told her doctor she didn't want to know any numbers - not her cancer stage, or number of positive lymph nodes, or anything. She just wanted to focus on treatment. Eventually she did find out all her stats but it was on her time.

A big hot button in the news this morning is that doctors are not completely honest with their patients. There are two parts to this issue - one in telling patients about prognosis and expected outcomes and the other with revealing their alliances and payments with drug and medical device manufacturers.

For the first issue, I think I want some information but only want hard details and numbers at a slower rate. At the end of my breast cancer treatment, I finally screwed up every brave nerve I had and asked my oncologist what he thought of my prognosis. I would not have been ready to hear it earlier, not that it was bad but I wanted needed to go through treatment with as much optimism as I could attain. Although doctors may not be as forth coming about outcomes and expectations up front, they also need to retain some compassion and explain as much as the patient wants. If you over whelm a patient with a poor outcome, you can send them spiraling into depression and despair. There needs to be a balance.

But if there has been an error in my care, I want to know about it. When I had my gall bladder out, in post op there was a giant bruise spreading across my stomach. From the nurse's comments I knew that was unusual and it was the largest pain area during recovery. It appears the surgeon was a bit heavy handed at some point - even though they were four tiny incisions, the tools used my have been pretty forceful to leave a bruise. But did he ever mention it to me when checking on me? No. Did I bring it up? No because I was in the post anesthesia haze for a while and my brain didn't function properly. As a result, I am fine but will probably avoid having the same surgeon again.

For the second issue of revealing affiliations and payments with medical manufacturers I think my stance is pretty clear: treat me based on what I need not on the weight of  the doctor's wallet.

Most of the time honesty is the best policy but sometimes a little fudging can be appreciated.

Should your doctor tell you the truth or what you want to hear?

So you go to see your doctor because you have been sick for a week and you want some antibiotics so you can finally get better. Or you have a cough and are concerned its more than just a cough and think the doctor should give you a chest x-ray to make sure its nothing more. You get the point - you go to the doctor with an expectation of care you should receive.

But the doctor doesn't agree and says what you want is unneeded. Your cold is a cold and will get better, antibiotics will do nothing. Your cough is a cough and you don't need an x-ray. Should the doctor agree with you and give you the antibiotics or x-ray or should they just tell you the truth? I want the truth.

I don't want a doctor to sugarcoat anything (especially when they say 'you may feel a pinch' - I want them to say 'it will hurt a lot and grit your teeth'), I want them to tell me the truth. I don't like doctors who try to paint a fluffy pastel colored picture of my health. Give me the details and the numbers and I'll suck it up and cope with it.

Maybe other people are different, they don't want the truth in a big pile of information, they want little bits over time or just don't want the details, they just want a cure for whatever they had.

I like my breast surgeon, he is good for telling it like he sees it. He has said things to me in a very open style that tells me the truth. Some people don't like him because he tells things very plainly but I appreciate it.

I have also learned that just because I make assumptions about what I want for care, the doctors are the ones that have the training to make the decision on what is really needed. I let them make the decisions and tell me why I need what they suggest. But then I do make sure I agree with them. Its my body after all.

Honesty = credibility

This morning I have two issues where a bit of honesty would provide credibility.

1. In California there is a lawsuit against Bristol Myers Squibb regarding fraud and kick backs to doctors. If doctors prescribe their drugs, instead of what is best for the patients, allegedly they would get kick backs such as cash, gifts, and happy hours with the LA Lakers.

2. In Boston, there is a lot of complaining going on because Blue Cross recently paid out a multimillion dollar golden parachute to its former president of five years. Even the doctors are now getting up set. Its hard to feel empathy for a company who says they are trying to keep costs down and then provides such big payoffs to its executives. Is it a non profit? If so, Blue Cross should act like one.

I feel both of these organizations are not being honest and are therefore losing credibility in my eyes. Even the LA Lakers, by allegedly participating in the alleged happy hours, lose credibility. The only ones I feel sympathy for here are the doctors who complain to Blue Cross.

Children are taught to be honest and tell the truth and people will like them and will have friends. Some how some people skipped that lesson and now are losing their supporters along the way.