A Diabetic on Parole, A Failing Healthcare System

Her blood sugars were terrible, more than three times the normal level. She was not a new diabetic, so to my thinking this was inexcusable. She should have known better. Frustrated, I told her she needed to get serious about her blood sugars and her diet. I told her to write down everything she ate into a log book along with the blood sugar levels I wanted her to check at least three times a day. I told her to follow up with the log book in a week.

A week later she was back in the office as requested,  the only part of my recommendations she had followed. Her log book was nearly empty, containing only four entries for the entire week. She told me that she had been “trying” but it was clear that our definitions of "trying" varied greatly. I reminded her that I could not manage her diabetes without information, that dosing her insulin depended on what her diet and sugars were. The displeasure in my voice was apparent as I told her again to write down everything she ate and all of her blood sugar measurements and to come back in a week. 

The next week's visit was not much better. There were a few more numbers but almost no dietary information entered. I repeated my previous admonitions and told I would need to see her every week until she had a better handle on things. Her response caught me off guard.

“I can’t afford to come back in a week,” she said.

“You can’t afford not to,” I replied, “you sugars are terrible and I can’t treat you without more information.”

“I know but I can’t afford the co-pay.”

“How much is it?” I asked

“It’s $10, but I can’t afford it. I just got out of jail and I don’t have a job and I can’t afford to keep coming in.”

I paused and looked at her, seeing her perhaps for the first time. Before me was a woman in her 40’s who looked as if she was in her 60’s. Some teeth were missing, her t-shirt was worn and had a few holes, and she wore no makeup. She was poor. As poor as she was materially I realized she was poor emotionally and intellectually as well. The stress of normal was almost more than she could handle. The added burden of checking blood sugars, of counting carbohydrates and adjusting medication levels, was beyond her reach. I realized that controlling her blood sugar would take a lot of time and effort and patience.

“Then I won’t charge you,” the words sounded right as they came out of my mouth, “I will see you in a week.”

The next week she returned, log book in hand. This time it was nearly half-filled with results. It was inadequate, but it was progress. Together we went over the log book as best as we could. As we did I pointed out how certain foods caused her blood sugar to rise and how the changes in sugar levels from one meal to the next helped me see that. I praised her progress and had her schedule another follow up appointment 7 days later.

Week after week she came, each time with more of the logbook completed and her sugars improving. After 2 months things clicked. She could analyze her results on her own, determine what she had done right or wrong, and come up with a plan for how she could do better. We started to space out her visits as he confidence increased.

Four months after our first interaction she went to the lab for blood work. To my great surprise it revealed that her diabetes was perfectly controlled. She had done it! At her next visit she was beaming with pride over her results. She was a failure no longer.

We scheduled a follow up visit for a month later. I was confident that she had turned a corner in her health and that her future was bright. I was wrong. She never came back.

She had lost her job and with it her health insurance. I offered to see her for free while she searched for another job but she did not come in. She never told me why, but I wondered if it was out of shame and embarrassment. Perhaps she was fearful in disappointing me. We had invested so much time, maybe she felt she was letting me down.

That was years ago. I never saw her again.

Her story illustrates much of what is wrong with medicine today. Our entire system is based on 15 minute visits spread out over time. While this works for many, there are those who need much, much more. People like my patient, for whom even small co-pays seem like mountains, whose health continually teeters on the edge of disaster, need more time and attention than out system is designed to provide.

People like her, whose life circumstances, educational background and emotional limitations make routine health decisions seem overwhelming, need more time, and time costs money.

There is no place for people like her in the American health system. Obamacare, with its $6500 deductibles and exorbitant premiums, provides no relief. Medicaid (MediCal in California) is a sham of a “solution”, paying a measly $24 for a routine 15 minute visit, forcing doctors to see a patient every 5 minutes in order to make a living and making good medical care impossible. Excessive regulation and documentation requirements make caring for the needy even more challenging.

I do not know what societal solution is needed. I only know what I can do, which is to make time when I can, invest time when I am able, care as much as possible, and fight off the sense of frustration and futility when my efforts prove inadequate. Every once in a while, I may be able to make a difference.

- Bart

A Tale of Two Lives

It has been a week for remembering.

In my Wednesday morning men’s group one of the young men shared stories about his grandmother who recently died from cancer. He had been raised by her, lived with her when his father was in prison while he was a child. She taught him about right and wrong, about what it means to be a person of faith. “If it isn’t in the Bible, I probably don’t know much about it,” was one his favorite grandma quotes.

She had been a source of strength and guidance for him, a constant presence of hope and faith. He told us of going through her things and finding the book in which she wrote her prayer list. The book was thick, its pages filled with handwritten names, many of whom he did not even know. Her passing meant there was now one less person praying for him every day.

Three days later I attended a memorial service for a patient, Mr. M, who had been my patient for 8 years. At his second visit I diagnosed him with a large melanoma. Within a week a surgeon removed it and for the next five years it seemed to be gone. The cancer was seldom mentioned when he came to the office. (He had a back that went out on him a few times a year, so I saw him often.)

Our conversations frequently drifted away from the medical. We talked of golf, family and work, and developed a mutual respect and friendship. We believed the cancer was in his past and that the future would be cancer free. That belief was shattered 2 years ago when a different kind of pain appeared in his ribs. An MRI scan revealed that the melanoma had invaded the vertebrae in his upper back as well as several of his ribs. It was a battle he could not win.

I sat in his service and listened as his best friend told stories of how they had met 20 years earlier and of the close friendship that followed. He spoke of the laughter, meals and motorcycle rides they shared,  and how ultimately they came to share faith in God. Mr. M’s brother-in-law shared how Mr. M had encouraged him in life and business, how he never would have achieved what he had without his input. His daughter spoke last, reading a letter she had written to her father a few weeks before he died. Through tear-filled eyes she described a man of love, dedication, strength and integrity. It was a lovely service. My eyes did not stay dry.

My patient and the grandma never met, but as I reflect on their stories I am confident that they will. The grandma lived a life of faith, daily serving God as best as she could. She died with the assurance of an eternity with Him. The patient traveled a different road. For much of His life he did not give God much thought. It was only in the last year of his life that he turned his attention to spiritual things. Nevertheless, in  the months before he passed he came to share the same faith as the grandma and the same assurance of eternity. They died within days of one another, brother and sister, adopted by the Father they were going home to meet.

Their stories move me. They remind me of both the transience and the importance of this life. My time here on earth will be brief, and may be over before I know it. Even though my days on earth will be few, the potential for me to have an impact on others is great. Like them, I want to live my life in a way that makes a difference.

- Bart

A Pain Filled Deposition

We were seated around the dining table in my office break room, two attorneys, a court reporter and I. A patient of mine was suing someone for injuries sustained in a car accident and that someone’s attorney had subpoenaed me regarding the case. It was a relatively straightforward disagreement. The patient said he had been injured and was experiencing ongoing pain, the defense was arguing there was no way he could have been hurt that badly in the accident.

The defense attorney showed me photos of the cars (there was almost no visible damage) and asked me about my findings and diagnoses for each patient visit after the accident. The patient had no physical findings consistent with an injury at any of the visits, did not consistently follow up with a physical therapist as requested, and had ultimately undergone an MRI of his spine that was perfectly normal. It was clear from his questions he believed this meant that there was no way the patient could be having pain. Brimming with confidence, he proceeded to ask me a stupid question.

“The normal MRI means the patient does not have a radiculopathic pain, correct?”

“No,” I replied.

“But doesn’t a radiculopathy mean that there is something compressing a nerve?”

“No, it means that the patient is experiencing pain in the area supplied by a specific branch of a spinal nerve. There are other causes of such pain.”

“What else could cause the pain?”

“I can give you an answer, but it is going to be a long one,” I replied. As i did I saw the confidence drain from his face.

I went on to give him the long answer. I explained there are many causes of pain that do not show up on an MRI or other imaging scans. I summarized the nature of pain fibers and how they could be activated without physical trauma, how once triggered even normal stimuli could lead to these nerve fibers firing and a patient experiencing severe pain.

In a resigned tone he verbalized the realization that he would have been better off not asking me that question. “I opened a can of worms,” he said.

The mistake he made is a common one. Most people do not understand pain. They understand pain after surgery, when a kidney stone gets stuck, or when a bone gets broken, but when there is no visible cause, they doubt it. If it can’t be seen it with the eyes or in a medical image it can’t be real.

This was the teaching I received when I was in medical school and residency. Patients who complained of pain in the absence of physical findings were filed into one of two categories. They were either crazy or they were “drug-seeking.” They were often treated with scorn instead of compassion.

It took years for me to understand how wrong this teaching was. My first inkling that there was more to pain than I had been told came after I had a knee operation in 1992. Several weeks after the surgery I was standing in the clinic when I had the sensation of something like a hot drop of oil running down my leg. So intense and real was the feeling that I turned and looked to see what was on my leg. The only thing touching my skin was the fabric of my pants. There was nothing there. The sensation was the result of a rogue nerve misfiring and sending inaccurate signals to my brain. There was “nothing” there, but the sensation was real.

My understanding expanded further 17 years ago when I suddenly began to have excruciating, burning pain in my right shoulder and arm. Over a period of weeks I saw 5 different doctors in search of an explanation. MRI scans and nerve tests were all normal. It was the fifth doctor who finally gave me the diagnosis of an inflamed spinal nerve, possibly from a virus. He gave me a diagnosis but could not promise a cure. The pain gradually faded to a persistent tingling but never passed. The pain returned a few years ago, this time deciding to stay, but MRI scans and nerve tests were again normal. The only evidence I can give others for the pain is a description of how it feels. It is “undetectable” but it is definitely real.

Pain of this nature is more common that many realize. Fibromyalgia, a pain condition that impacts as many as 10 million Americans, falls into this category. No visible damage can be detected and no blood tests are abnormal, but the pain can be debilitating. Many patients suffer for years while being told by doctors and others that they shouldn’t have pain. They shouldn’t, but they do.

The current theory is that these unfortunate patients have pain nerves that are overly sensitive. In the same way that some people are always cold, even on a warm day, fibromyalgia patients always hurt. Unlike those who feel cold, fibromyalgia can’t be helped by putting on a sweater. Medications can sometimes lessen the pain but there is no cure.

I cannot cure many of my pain patients, but that does not mean that I do not, or cannot care. I can listen to them and pray for them. Most importantly I have learned to avoid the mistake made by the attorney. When someone says they hurt, I believe them.

- Bart

Empty Promises and Feel Good Intentions

“How can I get people to believe we are committed to quality?”  The question was posed to me by the newly hired Vice President for Quality Management at the hospital. I was surprised by the question, not because the answer wasn’t important, but because I thought the VP of Quality for a large institution should already know it. I was further surprised that he was asking me. Although I had the fancy title of “Executive Director of the Primary Care Institute” I had only been in that part-time position for a few months and had no experience at all in quality management.

In spite of my lack of experience, the answer came to me in just a few moments. He wasn’t asking me how to manage quality, he was asking me how to get people to believe that quality was a high value for organization. With that realization the answer sprang forth from my lips almost without thinking. “Easy,” I said, “Do something to improve quality of care that is against your financial interest.”

He looked puzzled, so I explained. “When the goals of quality and profitability come into conflict, the one that wins is the one you are most committed to. People I talk to say the hospital is committed to profit, and that quality takes a back seat. If they see you do something that promotes quality, even though it hurts the bottom line, then they will believe you are committed to it.”

I do not think my answer was the one he was looking for, as the expression on his face in response was not encouraging. While my answer may not have impacted him that day, it had an effect on me. My answer taught me that the value of a thing is always measured relative to the value of other things. As people of limited resources, both in time and finances, it is inevitable that we will find ourselves having to choose where to invest our time and money. We cannot do everything so we have to make choices. Our choices reveal our values.

In the last few weeks I have heard many stories of choices made by others. I heard a minister share how a commitment to ministry had taken time away from his son, with heart-breaking consequences later in life. I dealt with a recently hospitalized patient with multiple serious problems who had been rushed into and out of the hospital by her doctors before her condition had been adequately treated. I ended my relationship with two separate hospice agencies who both promised attentive care and consistent communication, who both talked extensively about a commitment to service but neither of whom had bothered to update me on my patients for several weeks.

The minister had said he was committed to quality parenting, the hospital doctors would say they were committed to quality medical care, and the hospice agencies had repeatedly assured me of their commitments to compassionate personalized care, but they all fell short. They did not fall short because they despised the quality to which they expressed allegiance, they fell short because had a higher allegiance to something else. For the minister it was the demands of his ministry, for the hospital doctors is was the desire to get the patient out of the hospital, and for the hospice agencies it was a desire to save time by only communicating when absolutely necessary.

As it easy as it is for me to criticize the minister, doctors and hospice agencies (and criticize them I did), I do so at my peril. I am not immune to the trap into which they fell. Like them, it is not always bad things that get in the way of doing what I should. Sometimes it is a case of good things pulling me away from better things, other times it is forgetting what the best things in life are.

I share with all of them another reality. The world is watching to see what I am most committed to. Their judgment will not be based on the words I speak. It will be based on the choices I make.

-          Bart

God and Blood Pressure

His blood pressure was higher than it had ever been. There had been no changes in his medications nor any changes in his overall health, so I asked him if there were any life situations that might be impacting his stress levels.

“I am under a lot of stress right now,” he said. “I am going to be retiring next month and I am really worried about it.”

He was 70 years old and his career as a salesman had been successful. As his retirement seemed both earned and due, I asked what about his exit from the workforce he was worried about. The main source of stress for him was a common one for men in his circumstances. He did not know what he was going to do with himself. He had always lived a life of purpose, but his purpose had always been work-centric. Without work he had no goals, no objectives, no goal for which he could strive.

“Are you a religious person?” I asked, “are you a part of a faith community?” I explained that many people find purpose in serving others. As a man of character and integrity it seemed that mentoring others might be something he could do.

To my surprise he seemed less interested in my mentoring suggestion than he did in my question about faith, for this was what he addressed in his response. “I have never been into organized religion,” he explained, “but I am a very spiritual person.” He shared that he had been raised Jewish but that he was “very interested in Jesus of Nazareth” and that he had been to the Holy Land several times. He spoke of being in Galilee and on the mount where Jesus’ gave the Sermon on the Mount and other meaningful moments from his travels.

I wish he had not arrived late for his appointment that day, for this was one of those “non-medical” conversational detours that I wish I could have followed further. I could not continue the conversation further, but this did not keep me from later wondering if there wasn’t a connection between his fear of retirement and his non-specific faith. When he spoke of “God” he spoke of a “being”, but not of a person, of someone who was “there” but not of someone who was near. His faith was a hope for something but did not include a belief in a specific something or someone. It seemed his faith lacked definition and as a result lacked purpose. He did not have a specific “who” or “what” kind of faith and as a result he did not have a “why” for the rest of his life.

His blood pressure revealed that lack of purpose and meaning is not without consequences. His readings had previously been normal, it was only when retirement became real that they started to rise. There is comfort in having an understanding of our place in life, and of our place in the next one, and unease and stress associated with lacking a sense of who we are and where we are going.

His concerns reminded  me of a common Christian saying, “I do not know what the future holds, but I know who holds the future.” There is peace in knowing that God has a purpose, even when his purposes are not known. Peace it seems, and for some perhaps, lower blood pressure!

-          Bart

Thanks for reading and for sharing with others. Comments and questions are always welcomed.