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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Responding to Anti-Vaccine Hatred

“You killed that kid. You are a c---.”

“You are a part of the problem!”

“You should be ashamed of yourself and should not be a doctor at all.”

Since I published my posts on measles the attacks have been vicious and continuous. Multiple emails have flooded my inbox challenging my character and my motives and questioning my ethics and my intelligence, all sent by strangers who have never met me or spoken with me. As I read each one I ask myself, “How should I respond?”

The Barrett in me wanted to fight back, challenge every negative assertion and correct every false claim. I wanted to not just defend myself but to destroy their claims and show them to be the misguided people they were. I didn’t. Something stopped me.

That something might actually be a Someone, for at the time I was dealing with these responses I was also preparing to speak at a church in Burbank. The scripture for that Sunday was from the Sermon on the Mount, the part where Jesus informed His disciples that they were likely to be insulted, persecuted and lied about viciously in the course of following Him. He went on to describe how his followers should respond in such difficult circumstances, “Love your enemies and pray for those who persecute you.”

I must confess that this response was not the first one that entered my mind when I read the hateful emails! How could kindness be the appropriate response to hatred? As I continued to review the passage of Scripture and prepared my talk the answer to that question became clear.  Jesus consistently taught about eternity, about the blessings of the life to come. When the temporary attacks of others are placed in the context of the enduring blessings of faith it is easier to see the attacks for what they are, the responses of lost and broken people, people in need of a relationship with their Creator.  in this eternal context it is also easier to understand the appropriate response, as my goal should not be retribution or punishment but an effort to guide them to truth.

With this in mind I tried to answer every email I received. I avoided argument, instead choosing to acknowledge receipt of their message and suggesting web sites they could visit if they wanted more information. I did not apologize for my stance or affirm theirs, for that would be disingenuous. When there were specific questions I did my best to answer them. I doubt that I changed any minds but I hope that I may have challenged some presuppositions. I did not act in the way they expected. I pray they will reflect on my words and maybe even read other posts on the blog.

As I consider my responses to these strangers I am led to reflect on my responses when hurt and offended by those who are closer to me. I think of patients who have complained or given me negative reviews and of recent employees who unjustly accused me of unfairness. I have concluded that it is much easier to brush off the accusations of a stranger than it is to deal with accusations from someone who you thought knew you better. It is easy in such hurtful circumstances to justify an angry or defensive response. It is easy, but that does not make it right.

I need to learn to not take these slights personally, to respond in kindness whenever possible and to love and pray for those who hurt me, for this is the response that should characterize those who follow Christ. I know this because it was the response of Christ himself when he hung dying on the cross, his prayer for his persecutors, “Father forgive them, for they do not know what they are doing.” What a powerful example

May we all become more forgiving people.

-          Bart

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Autism, Measles, Vaccines and Truth. Protecting the Lives of Innocent Children

He had never been embraced by his adolescent daughter, never heard her say the words “I love you,” never had a conversation with her at all. Autism had stolen all of this from him, her condition was that severe. So moving were his words that as the man testified before congress, the hearing room was uncharacteristically quiet. In addition to being the father of a daughter with autism he was a professor of infectious disease at San Diego Children’s Hospital. While dealing with the challenges of being parent of a severely disabled daughter he continued his duties at the hospital  where he witnessed firsthand the damage brought by measles, polio and other vaccine preventable diseases. I vividly remember his concluding remarks. He told the members of congress that after reviewing the data on vaccine safety and autism, after experiencing the pain of his daughter’s condition every day of her life, and after seeing all of the diseases in question, he was certain. If he had to make the decision again, he would immunize his daughter in a heartbeat.

I was stunned by his testimony. Not only by its power, but by the fact that I had even come across it. I was channel surfing while on vacation and landed on CSPAN by accident right as his testimony began. It seemed almost providential that as a physician dealing with immunizations on a daily basis I would so fortuitously come across such a valuable story.

I have repeated his story many times over the years in conversations with mothers and fathers about vaccine safety. Over the course of dozens upon dozens of such conversations I have realized that vaccine questions come from two perspectives. There are the honest questions from those who want to protect their children from diseases but are nervous and are seeking reassurance, and then there are the confrontational challenging questions from those who are convinced that vaccines are harmful. The testimony of the San Diego doctor has reassured many in the first group and had no impact at all on the second.

I have often wondered why that is. Why is it that there are some people who seem to feel that 9 years of education, 3 years of training and 20 years of practice add no value to my opinion beyond that of someone with a computer, a web browser and some time on their hands? If my knowledge and experience mean nothing, how do I reach such people?

The answer to the first question, why some people do not respect my opinion, seems to be a cultural one. From the 60’s onward children were taught to question authority and to be wary of placing trust in those in power. Since the 70’s, an emphasis has been placed on self-esteem. Everyone’s opinion matters, everyone’s opinion counts, and to an extent, everyone’s opinion is equal. The end result is that the physician/patient relationship has seen a new dynamic. Gone are the days when doctor’s recommendations were readily accepted and followed. We are having to prove our knowledge, even in common areas of practice such as vaccines.

I cannot trace its rise, but there is another factor as well, the apparent desire of people to be in an elite group, the group that is “in the know.” Knowing something that others don’t, discovering a “truth” that has been hidden, seems to be a powerful elixir. In my discussions with those adamantly opposed to vaccines this attitude has been common. There is an air of “other people may be duped, but I am better than that” that pervades the conversation. This attitude allows for dismissal of any argument I may offer.

The internet has made the situation worse, as misinformation and misapplied data abound. Evidence to support one’s preconceptions is never more than a few mouse clicks away. I have noticed in the anti-vaccine crowd it is never the reputable sites that they quote. Immunize.org, the CDC and the Mayo Clinic are passed over for activist sites that proclaim the “truth.”

What has amazed me the most in my discussions with patients (and in the responses to my blog post) is the emotion and anger associated with the anti-vaccine movement. Physicians and Public Health officials are not simply mistaken or wrong, we are often characterized as evil, deceptive, “in the pockets of Big Pharma,” or motivated by greed and avarice. The most gracious of the anti-vaccine responders express pity, displayed in condescending remarks that suggest I have been duped or am simply unaware. To imply that we physicians would either knowingly harm a child or remain willfully ignorant of information that may benefit a child under our care is an accusation I find difficult to process.

I have had so many conversations and my response to vaccine questions has evolved over the years. As there simply is not enough time in the day to engage in 30 minute discussions with every family about vaccine safety I have reduced my comments to a few simple points.

I tell my parents that life is full of risks. They risked the life of their child when they strapped her in the car seat and drove to my office that morning. A risk free life is not possible. I use the example of seat belts and airbags, reminding them that every year in America people are injured or killed because of seat belts and airbags but that we continue to use them in the knowledge that they save far more lives than they harm. This is the truth about vaccines. In rare cases some children may have a harmful response to an immunization and in exceedingly rare cases the reaction and harm may be severe. The alternative, not immunizing children, is much, much worse to society. One child may get away with it if all of the other parents immunize, but if society follows that path many innocent children will die.

The honest questioners, those with open minds and hearts and who do not believe that the healthcare industry is guided by evil forces, accept my words and have their children immunized. The oppositional deniers try to argue with me. At that point I simply tell them that I cannot provide care for those who do not think I know what I am talking about and who do not trust my judgment, who think I would harm their children. Out of concern for other patients in my practice, I suggest they find care elsewhere.

While this works for my practice society has a more difficult challenge for being unvaccinated does not only place the individual in jeopardy, it carries with it the risk that others may suffer. The recent outbreak arising from Disneyland is a powerful illustration of this risk, as children too young for the vaccine became infected by others. So what do we do?

I am not a politician or a legislator, but difficult decisions need to be made. I am of a bent that places great value on individual liberty and I am reluctant to suggest actions that infringe on parental rights yet I do think an argument can be made to stiffen immunization requirements, especially for school admission and particularly for those diseases that are most contagious. We need to be careful about drawing lines in the sand over contagious diseases which are almost impossible to transmit in a classroom setting but should be willing to make a stand with readily contagious diseases such as measles. We should not expect innocent children too ill or too young to be immunized to be made to pay the price for the decisions of others.

As a culture we need to be willing to say that not all opinions are equal and that our public health decisions will be based on science and not emotion. It is not an overstatement to say that the lives of our children are at stake.

- Bart

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Sharing a Patient's Pain

At first glance there seemed to be nothing wrong with her. She appeared young, fit and attractive. The first glance was wrong. She was young and fit, but she was also in significant pain and quite afraid.

A few years ago she had meningitis. Her life was never in danger but she was incapacitated due to pain and needed to be hospitalized for several days. Her struggles didn’t end with her hospitalization as she battled severe headaches on a continuous basis for the following year. Her headaches sapped her energy and made it nearly impossible to work. After 12 long months the headaches finally remitted and she went on with her life, free from such pain. Until ten days ago. The headaches had comeback.  She was desperate when she arrived in my office.

We talked about the nature of headaches and how they could be difficult to treat, none of which was news to her. It was part of why she was afraid. She knew that treatments did not always work, she was just hoping that I could do something.

Without making any promises of cure I told I would do all her can. Then, almost in passing, I said something that I think helped a little. I said, “Your pain matters to me.” I shared my experience with severe pain years ago and the fear that came with, fear that I would not be able to live my life if it did not go away. I then told her again, “I will do everything and anything I can to help you. I will not just throw a pill at you and say, “Come back in a month.” I will work to help you through this. I gave her a few prescriptions to try and had her come back in three days.

She was back three days later with only minimal change so I adjusted the medication again. We agreed to touch base again within 4-5 days. While I was not able to give her a lot of hope, I think that knowing she had a doctor who cared meant that she was not totally hopeless.

Here is praying I stumble on a solution in the coming weeks. Her pain matters to me, and shouldn’t it? 

Her story reminds me that we all encounter hurting people and how much better it would be if other people's pain actually mattered.

- Bart

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