A Parent's Refusal. A Child's Pain

“I don’t feel comfortable with the medication you prescribed. I want to see a specialist!” The man was adamant on the phone, almost angry. I was stunned. Prednisone is a very common and, in the dose prescribed, incredibly safe medication. I had prescribed it hundreds of times in the past without any complications and was surprised he was so worried about it. Of greater concern was the fact that the medication had been prescribed two days earlier to treat debilitating pain from an inflammatory arthritis and that by not giving it to their child the parents had allowed him to suffer in agonizing pain. They were willing for him to endure days of needless suffering because of something they had read on the internet! How could this be?

The child had not been feeling well for a while and had gone to the local emergency room. The ER doctor ordered a number of tests including a chest x-ray and a urinalysis. Based on the results he made the diagnosis of both pneumonia and a bladder infection (a rather uncommon combination) and prescribed antibiotics. The family came to my office for follow up a few days later and saw my physician's assistant.

They told the PA  that after 5 doses of the medication a rash had developed and so they made the decision on their own to discontinue the medication. They were certain it was an allergy but in actuality the diagnosis was unclear. Nevertheless, there were no signs of infection in the urine or on physical exam, the rash seemed to be fading and the child seemed to be feeling well so the PA made the wise decision to not start any new medication until some of the tests were repeated.

I saw the little boy 5 days later. The rash was still fading, but a new symptom, severe joint pain, particularly in the knees, had developed. I ran through a list of possible causes of such pain and felt that there was likely to be an inflammatory process as the cause. The diagnosis of HSP (henoch-schonlein-purpura) rose to the top of the list. It is typically a harmless immune condition that resolves on its own but it can cause kidney issues, which could explain why the urine was abnormal in the ER. I ordered more tests. We discussed treating the joint pain but decided to wait as it had eased somewhat that morning.

The results came back the following day and included a normal chest x-ray, normal blood work, normal kidney tests and a normal urinalysis. The only abnormality was an elevated marker for inflammation. I called the parents to review the results and learned that the joint pain was again severe. Confident in the diagnosis of HSP I prescribed prednisone, the one medication that I was certain would quickly relieve her pain.

Late the next day the surprisingly antagonistic phone call came. As I spoke with the father on the phone I quickly realized the problem. The family did not trust doctors. They had been very reluctant to immunize, had avoided check-ups and had only come in when their child was ill. It was clear to me the problem was not that they were not comfortable with the specific treatment I had recommended, the problem was that they did not trust me to know what I was doing. I struggled with how to respond.

 I shared with them that the treatment was safe and effective and that there was no specific specialist for this condition. Further, the specialists that could be consulted would be very difficult to get in to see on short notice. I might be able to pull strings if their son did not respond to the prednisone, as that would make the diagnosis more unclear, but they were refusing to give it. The father repeated the concern that they were not comfortable with the prednisone. In their opinion it was not safe.

With great sadness I told them that there really wasn’t much more I could do. If they trusted their feelings and emotions more than my medical judgment, how could I treat their child? I had made what I felt was an accurate diagnosis and prescribed safe treatment. If they did not believe me then it was up to them to find a physician they could believe. I wished them well and encouraged them to find care elsewhere, letting them know that if they changed their minds and wanted to remain patients they would be welcome.

 I have not heard from them since.

 Families such as these are always hard. Somewhere along the line they become convinced that doctors cannot be trusted, that we casually make recommendations and prescribe medications that are harmful. They are convinced that advocating for children means defending them from doctors instead of working with us to help their child. Every treatment and every immunization becomes a battleground and even the most routine and mundane recommendations are called into question. In the end, the one who pays the price is the one they claim to defend, their innocent child. How sad.

-          Bart 

Doctor Barrett Goes to Washington

Just when I think my life can’t get any crazier, something else unexpected happens. I have been able to do some pretty remarkable things, but going to Washington DC to talk to congressional staffers was something I did not anticipate.

I just got back from what was definitely eye-opening trip to our nation's capital. I was asked by my medical group to join a briefing on proposed cuts to Medicare Avantage, a part of MediCare that is both popular and successful, especially in Southern California. About 75 congressional staff members attended the briefing. The remainder of my one day in DC involved meetings with staff of individual members of the House of Representatives where the same message was shared. I am not sure how much education the staffers received but I learned a lot in one day in DC. Here are some of my observations.

-          Our nation is run by some very young people. Almost everyone at the briefing and all of the staffers with whom we spoke directly were under the age of 30. I hope it is not discriminatory to say I wish those who were advising our leaders possessed a little more life experience!

-          Staffers don’t make very much (many are in the $30-$40,000 a year range) and as a result most don’t stay in their positions for very long (average is about 18 months). So our representatives are being advised by people who are both very young and very inexperienced. Not typically a desired combination.

-          If you are talking to staffers you need to talk fast and stay on message. I was flown to DC to speak for a total of about 30 minutes. I gave a 5 minute presentation at the briefing and then briefly answered three questions. My share in each the smaller meetings was 3-5 minutes of the total of 15 minutes we were allotted. 

-          We are a sound bite nation. Staffers are bombarded with information (about which they take notes on steno pads) if you want them to remember something it needs to be short and it needs to be impactful. I know I nailed the short part but have no way of knowing what the impact was.

-          Congressional staffs are rather large. Each member can hire up to 18 people. Basic math tells you that after you deduct time spent by representatives in meetings and in session there is not a lot of time left to spend with staff, all the more reason to make your points succinctly. I was left wondering how informed our representatives are about the legislation they vote on.

-          Many staffers, due to turnover and age, are not well versed on the subjects they are discussing. Some of the conversations we had were very basic. After the third meeting one of my colleagues started asking, “Do you know much about the type of Medicare plan we are discussing?” In some of cases the answer was “Not really.”

It was a whirlwind day and I was told that I performed admirably. (If there is one thing I am good at it is talking!) I got on the plane home a mere 26 hours after I arrived with a sense of exhilaration and pride. A few days later I am more reflective and I wonder about our effectiveness. We did our jobs well and delivered our message but there are so many voices and so many messages being delivered every day that there is the fear that ours may be forgotten or may fade overtime.

While it may be that our impact will be proven minor in the grand scheme of healthcare legislation I do not want to leave the impression that our trip was not important or significant. We definitely added to the discussion and enhanced the knowledge base of those who advise and educate representatives. But there was something else we accomplished. The three of us that traveled together from California did something amazing on Friday. We participated. We spoke out. We engaged in the process and tried to make a difference. We went not for ourselves but for the people entrusted to our care, for doctors and their patients and for a health system and its employees, all of whom work together to provide care to people who truly need it.

Which may be the most important thing I accomplished. I left the sidelines and got into the game. I didn’t score a touchdown or make a game-saving tackle but for once in my life, I played. Which is a pretty cool thing.

-          Bart

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It's a Zit Emergency!

“My son needs see the doctor about his acne, TOMORROW!” The receptionist was caught off guard and unsure how to respond. While it is our policy to always see patients who have an urgent she was pretty sure that there was no such thing as a zit emergency. The call came on a Thursday afternoon and we were booked solid on Friday so she decided not to work the patient in. She took a message and told him we would call him back later.

At the end of the day they brought the message to my attention. It seemed a little absurd and unreasonable to the staff that someone could expect to be seen last minute for pimples. I almost never turn a patient away but they let me know this was not a time to go soft.  They told me that I spoil my patients and do not say “No” enough and they made it clear that this was a time when I should put my foot down.

“This is ridiculous!” they said, “they should have planned ahead of time. It is not your responsibility to bail them out because they forgot!” The rant lasted a few minutes/

They were right on every count. It was absurd and unreasonable. No doctor could reasonably be expected to squeeze in a last minute pimple appointment. (Pun intended!) They should have planned in advance and it was not my responsibility that they hadn't. I had every right to deny the request and no one could tell me I was wrong if I did.

But the thought came to me, “Is it only about being in the right?”

I thought about my Christian faith, which teaches that all people have gone astray and turned against God’s plan, and that we are all deserving of punishment. I thought that God could have looked at me and said, “You are going to hell!” and He would have been RIGHT. But God didn’t do that. He looked at me in my ridiculous stupidity and wrongness and decided that instead of punishing me, He would send His Son instead. He overlooked my wrongness and went above and beyond to help me.

With that in mind I told my staff that while we could turn the patient away and be “right”, overlooking their wrongness would only add 15 minutes to my workday. So together we all agreed that we were right and the patient was wrong, but that we would see the patient anyway, because that is how we would want to be treated.

We saw the patient the next day and I refilled the acne medication. I do not think that he appreciated or understood that he was being done a favor or that a special allowance had been made. That was okay. For me, the reminder that it is not always about being right was its own reward.

-          Bart

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Out of Jail, Out of Control and in Need of Help

She had been out of jail for a little over a week and she looked it. Her clothes were ragged, her hair was disheveled and her smile revealed broken and missing teeth. It came as no surprise that her incarceration was due to a parole violation for a previous drug conviction. She had clearly lived a very hard life. She was also completely overwhelmed by her medical condition. She had diabetes and based on her lab results had no clue as to the severity of her illness or how to manage it.

He fasting blood sugar was measured at over 400, four times the upper limit of normal. It was not a fluke result as her once weekly blood sugars taken at home confirmed she was seriously out of control. As we talked it was her home blood sugar log that was most significant to me. The lack of numbers meant that she did not understand the importance of monitoring her blood sugars and the lack of response to the markedly abnormal results revealed ignorance about the need to control her disease.

I turned the conversation to the importance of monitoring her sugars and quickly saw her eyes glaze over. She had no idea what I was talking about. I asked some questions to gauge her knowledge of her disease and soon learned the problem. She was of below average intelligence and the basics of diabetes were at that moment beyond her comprehension. What could I do?

I could send her to diabetic classes, but she lacked transportation. The classes were just 6 miles away but that was about 5 miles too far. She had no car, no job and very little money. It was clear that her diabetic education would need to come slowly and in small pieces for her to absorb it. I realized there was only one option. I would need to have her come and see me frequently. It was up to me to teach her and help her.

“We are going to take this one step at a time," I said, "The first step is going to be you checking your sugars three times a day and keeping a log of your blood sugar results and of everything you eat. Then I want you to come back in a week so we can go over the numbers together.”

Her face sunk. “I can’t afford to come back in a week.”

“How much is your co-pay for an office visit?” I asked

“It is $20. I had to borrow money from a friend to come in today. I don’t have a job yet,” she said, embarrassed.

“So we will waive the co-pay. You need to come back in a week," I replied.

I saw her every week for the next 4 months. At first it was a struggle to get her to check her sugars on a regular basis and write them in her log book, as she only remembered about half of the time. It took almost a month to get enough data to be able to make recommendations about her diet and make medication adjustments with confidence. We kept at it and by the end the second month we were making progress and by the end of the third month the majority of her results were in the normal range. After 4 months I ordered blood work that showed her average blood sugars for the preceding 90 days. We reviewed the results together a few days later and I was able to tell her something that had once seemed impossible.

“You are a well-controlled diabetic!” Her smile was missing teeth, but it was still beautiful to see. She had gained control over an area of her life.

A month later she disappeared. She lost her insurance and could not afford the test strips or medications. I offered to see her in the office for free but she did not return. I never saw her again.

Reflecting on her story reminds me of several things. First, that while standardized approaches to patient care can make life easy, not all patients are standard. Some people need extra help. Second, extra help needs to come from somewhere and from someone who is willing to do a little more and go a little further. Sometimes I need to be that someone. Third, in spite of our best intentions and efforts there will always be those who we cannot help, those whose choices or circumstances are too much to overcome. We need to try anyway

The greatest lesson I learned is that you never know who will respond, who can be helped or where you can make a difference. Our job is not to judge in advance but to be there for people and to help whoever we can it whatever way we can.

-          Bart

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Medicine is Changing. Are you Ready?

Medicine has changed and many patients did not get the memo. Electronic record keeping and computerized data bases have made it so every aspect of a patient's health is now monitored, tracked, and analyzed. There is no longer such a thing as a simple office visit as third parties are telling doctors what to do, how to do it and who to do it to. 

When I started in practice 21 years ago the business was pretty easy. Most patient visits could be divided into three categories- routine check-ups, follow up for chronic diseases, and sick visits. Check-ups were straight-forward, uneventful reviews of overall health. Chronic disease visits were also easy, encounters focused on the problem in question- check the blood pressure, review the cholesterol or blood sugar, and make medication adjustments and order appropriate tests. Sick visits were easiest of all, as most of them were upper respiratory illnesses that could be handled quickly. 

Another characteristic of that era was that patients were responsible for their own care. We told them what they needed to do to be healthy, recommended screening tests such as colonoscopy and mammograms and encouraged appropriate diet and follow up tests. Whether or not they wanted to follow instructions was up to the patients. Being human beings, many patients didn't. Some forgot, many simply had other priorities. It was frustrating when patients did not do what they should for their health but we accepted the reality of the situation.

There was another reality that eluded both doctors and patients, and this reality led to changes in the way health care is delivered. The bad decisions patients made did not just effect them. When illness occurred as a result of these poor choices someone else, the insurance company, had to pay the bills. Insurers decided they wanted healthier patients and determined that reaching this goal required a dramatic change in how doctors practiced. The change came in the form of quality measurements. Doctors were to be held accountable for the decisions patients made, graded and financially incentivized based on the percentage of their patients who did what they were supposed to.

A new era of accountability has dawned. Doctors are now bombarded with forms and scorecards showing the percentage of patients who had mammograms, Pap Smears and colonoscopy. Reports pour in every week with the names of patients who have not been filling prescriptions on time, asking doctors to confront their patients about their non-compliance. Hours and hours of staff time are spent tracking chronic disease such as diabetes, with patients being reminded again and again to get eye exams, control their blood pressure and cholesterol and get their sugars under control.

The rules haven’t only changed for disease management. MediCare wellness guidelines are so arbitrary that we are required to annually discuss incontinence, fall risk, memory loss, ability to care for oneself, end of life issues and control of chronic pain with every single patient above the age of 65 regardless of health status. We have to check the same boxes for a debilitated 88 year-old as we do for a vibrant 65 year-old who plays competitive tennis, which is a bit puzzling to the 65 year-old!

The result of all of these metrics, reports and guidelines is that patients who come in for one problem find themselves being bombarded with instructions and questions for multiple other conditions they didn’t come in for. This can lead to defensiveness and a breakdown in communication, encounters that leave both the patient and the doctor feeling frustrated or dissatisfied.

So what to do? We start by understanding the new paradigm. I have begun educating my patients about the changes in healthcare. I explain to them the standards to which I am held and how their compliance has a dramatic impact on my practice and I am asking them for their help. The result? Increased cooperation, better understanding and decreased frustration. Medicine has changed  but if doctors and patients truly partner together we should be able to find a way to make it work for all of us.

- Bart

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