Saving Lives by Showing Up

Woody Allen said, “80 percent of success is just showing up.” I am realizing a similar truth in my office practice. 80 percent of success is just letting the patient show up.  You can’t help patients who can’t get into your office. We have experienced the benefit of showing up in dramatic fashion over the last few months.

In the middle of the busiest flu week of the year a young man called our office. He had complaints similar to so many other patients seen during that time, high fever, occasional chills, loose stools and abdominal pain. Our office policy is to see anyone who wants to be seen for anything at any time, so the receptionist worked him into the schedule of our Physician Assistant. She walked into the room expecting to see her umpteenth influenza victim of the day.

He didn’t look like the other flu sufferers, though. He was paler, covered in sweat, and his abdomen was extremely tender. Concerned, she called me into the room for a second opinion. I took one look at him and had him lie down for a repeat abdominal exam. His abdomen was rock hard and he felt pain with the lightest touch. Minimal movement made the pain worse, as even tapping the soles of his feet was agonizing. I knew something was wrong.

“It could be flu,” I said, “but your symptoms are consistent with a surgical abdomen, what we see with a ruptured appendix for example.” I told him that because there was a possibility that he was seriously ill I wanted him to go straight to the emergency room.

The next day his mother updated us on his condition by sending us a message. “Thank you for saving my son’s life,” she said. Tests had shown that not only had his appendix ruptured but that he was septic, with life-threatening bacteria found in his blood stream. Has my receptionist made him wait a day longer, the delay could have been fatal. We all breathed sighs of relief. We knew that his life had not saved by brilliant medical acumen. He was saved because he was allowed to show up.

We had another close call a few weeks later. A man in his 60’s called saying he did not feel well. He was unable to give the receptionist more specific information. He just felt weak and sick. She told him to come on in to the office. As luck would have it, he was also seen by our PA. Although his blood pressure, heart rate and oxygen levels were all normal, she did not like the way he looked. It was my day off, so she called me at home to discuss the case. It was immediately apparent to me that she was unusually worried about him.

“Do you want me to come take a look at him?” I asked, “I am not doing anything and I can be there in 5 minutes.” She did not require convincing. She definitely wanted me to take a look. Attired in jeans and a t-shirt I went in to see him. When I entered the room I instantly understood why she was worried. He just looked wrong. He was pale, and his face was covered with glistening sweat. He looked like someone who was sick, even though his vital signs were normal.

“I am worried about you,” I said, “and in order to make sure you are okay I need some answers, answers I can’t get fast enough outside of the hospital. You need to go the emergency room, because they can get the results quickly.”

I had no idea how quickly the answers were needed. A little over an hour later in the emergency room he on the verge of dying. He went into respiratory failure and needed to be put on a ventilator. Further tests showed the cause, he had blood clots in his legs that were traveling to his lungs. Only the grace of God and the skill of the critical care team saved his life.

The next day in the office the topic of conversation was what would have happened it we hadn’t had him come in right away, or if I hadn’t come to the office, or if we hadn’t sent him to the emergency room. We shared the draining realization that we came so close to losing him. It was clear to all of us that his life was saved because we allowed him to show up.

I wish I could say that this was always the way I practiced medicine, that same day access without explanation or questioning has always been our response. A little over 7 years ago we started offering same day access to sick patients who called before noon. We only began guaranteeing the service to all callers regardless the time they called in 2015.

It is the best thing I have ever done in medicine. I have realized that while I can’t always be right, I can always be available.

Somehow, I think there is a lesson here for all of us. Showing up is important.

Bart

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The Torture of the Silent Innocent

I stood at the foot of the bed and watched as the man did- nothing. His eyes were closed but I did not think he was sleeping. Sleep is what people do to regenerate themselves after times of wakefulness and he was never awake. He had no intentional control over his bodily functions, even the most basic. A machine at his bedside was responsible for pushing air in and out of his lungs. He did not even need to open his mouth to receive air, it was supplied through a plastic tube connected to a hole in his neck. He did not eat. Nutrition was supplied via another plastic tube inserted through another hole in his abdomen. His "existence" was a totally passive one.

The only times when he was not passive were when he was unsedated enough to tug at his tubes or paw at their insertion sites. There was no way of knowing if there was any thoughtful intent to these movements, whether they were a mindlessly reflexive clawing at a perceived skin stimulus or a semi-conscious expression of discomfort and a desperate desire for the suffering to end. Either way it was a heartbreaking scene. As pitiful as his movements were they did not seem to illicit compassion from his caregivers, for their response to these movements was to employ someone to sit at his bedside and attentively wait to pull his hand away from his tubes to ensure that his “life” would continue.

I stood at the foot of his bed and wondered how a man’s life could be reduced to this, how a man so young could be expected to endure so much. He was younger than me, at an age when other men would be walking their daughters down aisles or bouncing their first grandchild on their knees. He had done neither nor would he ever. His brain damage was permanent. He would never speak, communicate or walk again. His shrunken 90 pound body would never leave a bed. His tragic state would never improve. His life was as "good" as it was going to get.

I wondered, "Why are so many working so hard to extend a life no one would want?" 

I have had hundreds of conversations with people over the years about how and in what circumstances they would want to be kept alive and how and when they would want to be allowed to die if their were so incapacitated. I have never met anyone who said they would want to live in a state such as his. The ability to communicate and the ability to recognize loved ones have been the universally expressed minimum functional requirements for wanting one's life prolonged. Some people say they would need to be able to do more, to care for themselves, feed themselves and have some independence, but no one with whom I have spoken has said they would want to live with less. No one would want to live like this man.

No one would want to live like this and yet people were fighting to keep him alive. They fought not just with breathing machines and feeding tubes but with antibiotics, surgical procedures and medicines to maintain blood pressure and heart function. As I looked upon his misery the question, “Why?”  seemed as if it was his silent scream. Why would doctors work so hard to keep a man alive in such a miserable state?

If asked, the doctors would reply that they had no choice, that it is “what the family wanted.” In this case, and the many others like it in which I have been asked to provide ethical guidance, this is the common physician response. My frequent reply is, “What right does a family have to demand an existence that no one, including themselves, would ever want?”

Physicians forget that in cases such as this families do not have “rights” as we typically define them. Family members and surrogate decision makers have responsibilities, not rights. It is the patient who has rights, including the right to not suffer, the right to undergo only those treatments which provide benefit, the right to not have life needlessly prolonged, and the right to die with dignity. If there is a “right” held by the family it is the right to the information needed to aide them in their obligation to make sure that the patient’s rights are recognized, honored and protected. Somewhere along the way this understanding has been lost, and family wishes have been prioritized over the wishes of patients. Patients have become victims of the whims and fears of others, stripped of basic human rights and dignity.

It does not have to be this way. If physicians and hospitals can muster the courage, if they can find within themselves a commitment to doing right by their patients, this needless suffering can end. Physicians are all aware of the common tendency of family members to speak for themselves and not for the person who is dying. Knowing what we know about the dying process it is time for physicians to stop the practice of unquestionably following directives of family members that serve only to prolong suffering . The odds against someone choosing to live in a non-communicative, near vegetative state are astronomically high.  Caring physicians have a duty to question the veracity of claims that such a life is desirable. 

In my experience it is far more likely that family demands to prolong the dying process are based on secondary gain rather than a belief that a patient would want to live in such a state. I have never met a patient who wanted to live as the patient described above, but I have seen a number of cases where a patient's death would have an adverse impact on the financial situation of their decision maker (loss of pension or social security checks, or loss of right to live in family home). I have seen many more cases where unresolved guilt has prevented family members from accepting the reality of death and letting go.  Since secondary gain for family members is for more likely in these circumstances than a patient wishing to be kept alive, one would think that physicians would want to make sure of patient wishes before yielding to unreasonable demands. This is not yet the case. Family demands almost always win out.

It might seem inconceivable that doctors would so easily allow suffering to continue, but there is a twisted logic to their response. The unreasonable demands to "do everything" are made by people who are able to speak and express anger and who frequently combine their demands with threats of legal action.  Angry families are in a position to make life miserable for any physician who dares to question them. The victim of their demands is unable to speak, unable to express anger, and unable to communicate the pain they feel. They are helpless and often hopeless. The easiest path for a doctor is to give in and go along.

It does not have to be this way. Their are things patients and physicians can do to change the status quo. Patients who take the time to make their wishes known in advance and who write them in clear and detailed fashion, provide their doctors with a powerful weapon against needless suffering. Physicians who educate themselves in ethical principles and in end of life care and draw strength and courage from their knowledge. Hospitals and medical staffs can build robust Ethics Committees that are knowledgeable and responsive to requests for assistance. In the hospital in which I work we have seen this make a difference. Our Ethics team responds within hours to consult requests, answering questions and assisting doctors in responding to unreasonable demands that serve only to prolong suffering. Our Medical Staff has a policy that clearly defines when care is no longer beneficial and provides a way to free patients from harmful care.

We are seeing change. The sleeping giant of physician advocacy on behalf of their patients is beginning to wake. Needless suffering is on the decline. The change is coming slowly, but it is coming. I am grateful to be a part of it.

- Bart

Saying Goodbye to the Anti-Vaccine Lie

I try to listen to my patients, to be sensitive to their feelings and concerns. I try but, when it comes to parents who don’t want to vaccinate their children, I don’t succeed. There is an attitude in the anti-vaxx movement, an anti-medicine, anti-science, anti-doctor conspiratorial mistrust, that stretches my patience.

I have tried to see things from the anti-vaxx perspective. I have researched the claims of anti-vaccine activists, visited their websites and read their “evidence”. It is hard to wade through their passionate arguments without getting angry. Facts are twisted, science is ignored and evidence is discarded. Even the purportedly “scientific” papers cited in support of their positions are misrepresented, overstated and biased. Not one of the articles I have read would survive critical peer review. They were universally poorly written and scientifically absurd. In spite of the seemingly obvious flaws in these articles, thousands (if not millions) of parents believe these arguments and choose to not immunize their children.

Because I care about the health of children I have debated and argued with dozens of anti-vaccine parents over the years.  Each encounter has left me amazed at the willful ignorance displayed. I say willful, because in order to believe vaccines are harmful one must choose to ignore mountains of evidence about vaccine benefits and to instead believe that we live in an evil society filled with deceived and sinister people who are willing to harm children for the sake of profit.

If vaccines are harmful, the cover up is massive. The CDC has 14,000 employees, 68,000 people work for the pharmaceutical giant Merck, there are over 30,000 pediatricians in the United States, and over 130,000 Family Physicians. If vaccines are truly harmful then there are over 200,000 people in America who are part of a system that is willfully harming children. What an evil world that would be! 

 If vaccines are as dangerous as the anti-vaccine crowd declares then evidence of this harm must exist and should be easy to discover or reveal. Surely there would be at least one well placed whistle blower who could reveal such a conspiracy. Riches and fame would surely await the man or woman brave enough to reveal such an important truth. The fact that no one has come forward with such evidence has only one explanation. The evidence does not exist.

Anti-vaxxers often say that “Big Pharma” is behind the push for vaccines, that vaccine makers are endangering children for the sake of profit. Those who make this argument fail to apply this reasoning to the entities that actually pay for vaccines, the insurance companies. Insurance company vaccine costs are over $2000 per child. There is no profit in paying for useless treatments. In addition, if a child is harmed by a vaccine, insurance companies are on the hook for the cost of treatment. If vaccines are dangerous, then insurance companies are run by very stupid people.

While many of us will chuckle at these facts and dismiss the absurd arguments of anti-vaccine parents the fact remains that millions of children being placed at risk due to the willful ignorance of their parents. One has to ask, “How is it that so many parents are willing to believe such lies and expose their children to preventable illnesses?”

In speaking with anti-vaccine parents one explanation is readily apparent. There is immense psychological reward found in feeling superior to others. Anti-vaxx parents believe that they are smarter than others, more concerned for their children than other parents, more knowledgeable about immunology and vaccines than their doctors. Not only do they refuse to vaccinate their children they look down on those who do. They are crusaders, special and noble warriors in the fight against a greedy and evil society.

It is this attitude that makes dialogue with anti-vaxx parents so frustrating. Since all who disagree with them are either ignorant, misinformed or evil there is no reason for them to listen. My training is irrelevant because the AMA is in the pocket of Big Pharma. My knowledge is insufficient because I have not read the things that they have read. (The fact that they have read none of the reputable scientific research and know nothing about physiology and immunology is dismissed.) I have learned that there is nothing I can say to change their minds.

In spite of their proclaimed commitment to "researching" treatments I have found this commitment selectively applied. Many of these proudly skeptical parents readily embrace unproven and non-scientific therapies. They have no problem with homeopathy, naturopathy, body cleanses, or essential oils, in spite of the lack of studies demonstrating their effectiveness. In the case of some treatments, such as body cleanses, in spite of overwhelming evidence against effectiveness. It sometimes seems that there only two criteria that need be met for them to endorse a therapy. First, some stranger on the internet must say it worked for them. Second, traditional medicine must reject or question it.

It is extremely frustrating to dialogue with those who claim science in one circumstance and then ignore it in another. I can't help but believe that if people applied the same level of doubt and skepticism to alternative medicine as they did to vaccines, alternative medical practitioners would be out of business in a week!

The question of what to do with the anti-vaccine movement is frequently debated in the healthcare community. There have been many studies conducted and many articles written on how physicians can best respond to anti-vaccine parents. I have read many of them and after significant reflection have decided to give up. I don’t argue anymore. If parents want to learn about the overwhelming evidence in support of vaccines it is just a few mouse clicks away. If they choose to believe the anti-vaccine lies and place their child at risk then I tell them to seek care elsewhere. I am not the doctor for them.

This position is often heart-breaking for me. I have lost many patients over the years as a result of this stance. Just this month I found myself saying goodbye to a family with whom I had shared a long and seemingly close relationship.  I have no doubt that similar partings will happen in the future. As painful as the loss of relationships can be, with each farewell I take comfort in the knowledge that the choice to leave was ultimately made by not by me but by the parents of the child. Parents who did not trust my training, experience and judgment, parents who wanted someone to submit to their faulty conclusions without questioning.  Parents who didn’t want me.

- Bart

Blessed by a Dying Man

He was a bear of a man, in two varieties. He was big, strong and burly, an imposing presence like a grizzly. He is also warm and kind, always ready with an encouraging word, like a teddy bear. He is one of those remarkable patients who always takes the time to ask me how I am doing and truly is interested in the answer. On more than one occasion he has asked me if he could pray for me before he left the office. It made me feel guilty at times. I was the one who was supposed to be making others feel better.

He is only one kind of bear now. The big bear aspect of his nature has faded. Cancer has removed almost 100 pounds from his frame and the tumor compressing the nerves to his left arm has resulted in incapacitating pain. He has been on hospice for over a year now, his disease incurable and his death imminent. It is hard for him to get out as much as he used to which makes the still present teddy bear side of his nature more difficult to share.

As encouraging others has been such a major part of who he is the isolation has been difficult for him. He has been wondering why he is still around, why God has yet to take him home, why he must live in so much pain when there is so little he can do for others.

He shared these thoughts with me when I stopped by his home on Friday for a hospice visit. There was not much for me to do from a medical perspective. For the last several months the only changes in his care have been increases in the dose of his pain medicine. He has been in agony, daily choosing to endure the pain rather than be comfortable yet sedated and less present for others. As bad as the physical pain is as we talked I could tell that the emotional pain was taking a greater toll. He felt he had little to give others and that was breaking his heart.

In almost the same breath as his sharing a sense of worthlessness he told me that I had been on his mind for the last several weeks and that he had been praying for me daily. He asked me how my family was, if everyone was okay. If there was anything or anyone who needed prayer it was clear he wanted to know. He told me that he loved me, not just as a doctor, but as his friend. We spoke for a few minutes more and I tried my best to encourage him.

As I turned to go he stopped me and told me to wait. He reached for his wallet and I could tell he wanted to give me a gift. “Please, no,” I said, “You do not need to give me anything! This is my job!” He shook his head insistently and told me that he wanted to give me something. He took money out of his wallet.

“Take the girls in your office to lunch on me,” he said. I hesitated, he would not take “no” for an answer. He wanted to do something, to make a difference in my life. I realized how important it was to him. He wanted to bless me, to bless my office, in any way he could. He needed to bless us, because that is who he is. He is a man who lives to bless others. I let him shove the money into my hand.

I left his home, once again moved at his kindness. As unsure as he is about why he is still around his purpose is clear to me. He is a testimony to others about what it means to be a Christian. He embodies Jesus’ teaching about putting others ahead of ourselves, of loving selflessly. He is a blessing to others, and a blessing to me. Like the Savior in His moment of suffering, my patient is choosing to consider the needs of others.

 Bart

Thanks for reading. Pray for my patient, Mr. R, that God will comfort him and encourage him. Consider sharing this post and asking others to pray for him as well.

Great Doctors, Terrible Outcome

I stood silently by his bedside in the Intensive Care Unit listening to the rhythmic hissing sounds of the ventilator as it repeatedly pushed oxygen into what was left of his lungs. “Poosh, poosh, poosh,” the sound a constant reminder of how sick he was. On the monitor above the bed the tracing of his heart rate kept its own rhythm, an almost mocking evidence of life. Although he felt nothing, I felt a pain deep in my stomach and an ache in my heart. I asked myself, “How did we end up here?”

He seemed perfectly healthy a few weeks earlier when he came to see me in the office for his check up. His blood pressure was good, his heart was strong, his lab work was normal. He exercised regularly and was in near perfect shape for a man in his early seventies. The only blemish on his health record was a distant one. He had once been a heavy smoker but had stopped 10 years earlier.

If his visit had been scheduled a few months earlier I would not have ordered any additional tests, but he came in shortly after a study on lung cancer had been announced. Less than a month before his physical I had been a part of a team of doctors involved in drafting a new lung cancer screening protocol for the hospital. The recent study had shown for the first time that early detection of lung cancer could have a positive impact on survival. The evidence revealed a 20% decrease in lung cancer mortality when patients over the age of 50 with a heavy smoking history had annual CT scans to screen for small tumors. He was the first patient of mine who met the criteria for testing and I enthusiastically recommended the test.

I was stunned when the test revealed a cancer but was hopeful that we had found it in time. That was, after all, the purpose of the test. I referred him to the thoracic surgery team for removal of the tumor. The surgeon, one of the very best at his craft, met with the patient, did the appropriate evaluation and scheduled him for surgery. Everyone was upbeat and hopeful. The day before the operation he played basketball in the driveway with his grandchildren.

The first hint that things might not go as hoped happened in the operating room. The initial plan had been to resect the tumor and leave most of the lung intact. The plan fell to the wayside when the surgeon discovered that the tumor was larger and more invasive than the scan had suggested. The cancerous mass had wrapped itself around the bronchus, the air tube supplying a major portion of the lung. The surgeon had no choice but to remove the entire lobe, significantly more tissue than he had planned. The doctor was disappointed, but was still confident that he had removed all of the tumor and the patient had a good chance at recovery. He sewed the patient up and moved him to the ICU, where all chest surgery patients go after leaving the recovery room. The plan was to keep him on the ventilator for a day or too while the lungs healed and then allow him to breath on his own.

That never happened. The years of smoking had caused another previously unknown problem. Although he was physically active, he had undiagnosed COPD, chronic obstructive pulmonary disease. The combination of the stress of surgery and the chronic disease were too much to overcome. The remainder of his lungs were too diseased to support him breathing on his own. Lung specialists, heart specialists, and other specialists were all asked to help but there was nothing anyone could do. He was never going to get off of the ventilator. It was up to me to inform the family of the bad news.

The conversation with the wife was intense. The question was asked, “What went wrong.” The answer was both nothing and everything. Each and every doctor had done everything exactly right. I had ordered the right tests, as had the surgeon. The surgeon had made no mistakes during the operation and the correct medications and treatments had been prescribed. In spite of our combined efforts  he remained unconscious and dependent on a ventilator. It was a hard message to accept. The wife and I agreed to wait a few more days to give him a final chance to respond, praying for a miracle. It was understood that if no improvement came that we would have to let him go. A few days later we said our tearful goodbyes.

His death was a devastating loss for all who were involved in his care. I found myself wishing I had never ordered the CT scan and grieving the decision to proceed with surgery. I wrestled with the reality that while his death from lung cancer was a certainty, it need not have happened so soon. I will never forget the anguish of his wife as we stood at his bedside, nor the heartfelt tears in the eyes of the surgeon when he told me there was nothing more that he could do. He was a good and kind man and the loss was real.

I have also never forgotten the truth that excellent care does not guarantee good outcomes. Life happens, and death happens, even when doctors do everything right. I am reminded not to assume the worst when bad things happen and to avoid placing blame and pointing fingers. Sometimes our best just isn't good enough, in all areas of life.

- Bart

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