Passionate Words, All of Them Wrong

It should not have surprised me, but Natalie Portman has something in common with both Kylo Ren and Rey in The Last Jedi. Like them she confidently spoke sentences, every word of which were wrong. She did this in her speech at this year’s Women’s March in Washington D.C.

Here is what she said-

“So I’d like to propose one way to continue moving this revolution forward. Let’s declare loud and clear that this is what I want. This is what I need. This is what I desire. This is how you can help me achieve pleasure. To people of all genders here today, let’s find a space where we mutually, consensually, look out for each other’s pleasure, and allow the vast, limitless range of desire to be expressed. Let’s make a revolution of desire.”

Ms. Portman passionately spoke of pleasure and desire being of profound importance, goals worthy of revolution. She spoke of society having an obligation to help her achieve pleasure, to protect and defend every person’s right to pursue pleasure. To Ms. Portman, there is a limitless range of desire, all of it worthy of pursuit, all of it worthy of expression.

Ms. Portman was passionate, but just about every word she spoke was wrong.

Desire is perhaps the least trustworthy of human emotions. The reality is that it is possible for each of us to feel something strongly, believe something deeply, and desire something intensely and be completely wrong. Adulterers, drug addicts, and the mentally ill can all testify to the truth that there are desires that should not be fulfilled. Some desires are destructive and harmful.

When my kids were entering adolescence I sat them down and intentionally warned them against trusting their desires. I told them that some desires are good and some are bad, and that the goodness and badness of desires cannot be distinguished by the intensity of feelings. Because of this, if they wanted to be good people there would be times when they would have to say, “No” to their desires.

Self-denial has been a key factor in the success I have experienced in my life, both personally and professionally. In medical school there was very little pleasure to be found studying biochemistry and neuroanatomy. During my Family Practice training I had no desire to work 36 hour shifts or to spend every fourth night away from my family. In my current practice I don’t particularly enjoy staying late in the office returning phone calls or reviewing lab tests. Yet all of these undesirable tasks were and are necessary if I want to be a good physician. I can’t always do what I feel like doing.

I realized the futility of pursuing pleasure at an early age. As a young man I understood that marriage was about sacrifice and that being a good husband was about setting aside my desires and putting my wife’s needs ahead of my own. This type of sacrifice started before ever I met my wife. I wanted my future wife to be my one and only, to honor her emotionally and physically, which meant holding sexual desires in check. I knew there were many people who were experiencing more “pleasure” than I was, but I had a greater goal in mind. I wanted to be a great husband someday.

When our children came along there were other desires I needed to set aside. I always enjoyed sports and exercise but soon learned that there were not enough hours in a week to allow me to play sports and be available as a dad. Some things that brought me pleasure needed to be set aside in order for me to be a good father.

Some might read these words and say, “You weren’t giving up on pleasure, you have had a very happy life” Exactly! Lasting joy comes not from pursuing personal pleasure and fulfillment, but in serving and loving others. The greatest joy of all comes from doing what is right, not from doing what we want. Pleasure lasts for a moment, joy endures.

- 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

When God Pulls Back the Curtain

I struggle with the concept of faith. The whole idea of trusting in a God I cannot see is difficult for me. I often wish that I could see God, or at least see some miraculous evidence that He exists. I understand that life itself is miraculous, as is the universe and everything in it, but I often long to see the type of mind-boggling, law of nature suspending, spectacular act of God I see described in the Bible. I know that God has given me more than enough proof of His existence and that the historical evidence for Jesus’ life and resurrection is compelling, but I still find myself sometimes wanting… more.

This sentiment was a part of my morning prayers a few weeks ago. I often pray as I walk our dogs before getting ready for work and on that particular morning I was in an especially whiny spiritual mood. “God, it has been over 2000 years since Jesus walked earth. It is hard to believe in something that happened so long ago. I wish I could see you move.” I knew my prayer was wrong and selfish but it was reflective of how I felt at that moment. I moved on to praying for others and soon forgot about my words.

A few days later I was doing some year-end financial planning and turned my thoughts to end of year charitable giving. Lisa and I have always given a portion of our income to Christian ministries and, since I typically receive an end of year bonus from my medical group, we tend to make a donation of some sort at the end of December. I had bounced a couple of possible recipients off of Lisa in previous weeks but we hadn’t yet made a decision on where to donate. On the morning of Saturday the 23rd of December and I got an idea to give somewhere new. I went out to the kitchen to see what Lisa thought of my plan.

“We’ve been talking about end of year giving for a while,” I said, “what do you think about giving money to Bill?” Bill is a retired pastor with whom I have become friends this year. He works for a unique and small organization that provides support to pastors. His job is to be a listening ear and encouraging voice to pastors, particularly those who are struggling with the intense scrutiny that comes with a life of full-time ministry. In addition to this work Bill teaches adult bible classes almost every week. He is a busy and faithful servant of God. From hearing him speak I had come to appreciate his heart and his commitment to others. I had also come to the conclusion that he and his wife live on a very modest budget. As he had encouraged me greatly in 2017  I thought giving a gift might be a way to encourage him.

“That would be good,” was Lisa’s reply to my proposal (which was surprising, because Lisa is the one who usually chews on ideas for a while before making a decision.)

“I am thinking of giving a chunk,” I told her, making sure she knew that this would not be a token gift.

“You usually do,” was her answer. In my typically impulsive manner I walked out of the kitchen and into the extra bedroom where we keep our computer. I searched online for his ministry organization, found the website and clicked on the “donate” link. I typed in chunk dollars and zero cents, entered my credit card information and clicked “submit.”

The next morning Lisa and woke up debating whether we should go to church on Christmas Eve. We wanted to attend the service but Lisa was feeling overwhelmed by the season and still had a long list of things to get done. We ultimately made the decision to go and hurried to make it to the 10:00 service. We pulled up to the curb at 9:55, feeling proud that we had made it on time.

Our church is rather large so we were surprised when we did not see anyone as we walked around the corner from the parking lot. It was not until we were almost to the door that we encountered any other people. We saw one of the Pastors and his wife and stopped to say “Merry Christmas” and exchange hugs. As we greeted them we saw Bill standing several feet away, as if he was waiting to say something to us. Indeed he was, and he walked up to us a few moments later.

“I got an interesting call from my boss yesterday asking me if I knew a Bart Barrett,” Bill said. He had been taken aback that his boss had known who I was, and he told us he had been racking his brain trying to decipher the connection until his boss told him of our gift. Bill told us he was hoping he would see us so he could thank us personally. He then shared with us details of his financial situation that were completely unknown to us.

As with many in ministry, Bill and his wife rely on the donations of others. Just days earlier he had been reviewing their records and realized that there had been a significant decline in their contributions in the previous three months. So steep was the drop that he was thinking that either God would have to come through with unexpected donations or they would have to find a way to make do with a lot less.

“Bart and Lisa, I want you to know, that after PayPal took their cut from what you gave, the amount we received from you was exactly the amount that we were short,” He told us. He repeated this detail a few times for emphasis. Our gift matched their need almost to the exact dollar amount.

We were stunned. To us it had seemed a whim, a barely thought out impulsive gift. I hadn’t spent time in prayer asking God how much to give, hadn’t thought much about it at all. It was just the amount that popped into my head when I sat down at the computer. And yet it was the exact amount that was needed. It was a “God thing.”

It was later that I realized that God had not only answered Bill’s prayer, he had answered mine. In that moment He had pulled back the eternal curtain and given me evidence that He is real and He is working. As He did, He also showed me why He does what He does. He does things so that He will get the praise and the credit. If I had given more, it is possible that Bill’s focus could have been on the gift. Because we gave the exact amount, Bill’s immediate response was to give thanks to the only One who knew what the exact amount was.

This small miracle was a huge blessing to us, and it did not carry with it the risk that can come with more flashy miracles. We see in scripture that when Jesus did some of His great miracles there were some who became obsessed with the miracles, who became more interested in the deeds than they were in the doer. Years after Jesus’ returned to heaven early Christians had a similar problem. The church at Corinth was so focused on showy signs of miraculous power that they were at risk of losing sight of Jesus' most important command, His instruction to love one another. Aware of this, Paul specifically told them that as desirous as miraculous gifts were there was a more excellent way, the way of sacrificial love.

It was the way of love, the desire to love and serve a friend who had been an encouragement to me, that led Lisa and I to give. It was loving God who allowed Bill's need to arise and it was God who moved me to give the exact amount needed. It was God who had us arrive at church at just the right moment, and to walk to just the right place so we could hear Bill share his story.

It was God who answered my selfish prayer, who showed me that He is real and that He is moving in my life even when I cannot feel Him or see Him.

- Bart