Prostate Cancer and Solving Societal Ills

Death from prostate cancer can be agonizingly painful. It spreads to bones, eating them away. Patients feel as if they have fractures all over their bodies. It is a sadly common disease, killing 1 in 50 men. The medical profession has for years sought a solution, tried to find a way to catch the disease in the early stages and prevent the suffering. We have failed miserably.

For a while there was hope. Over 30 years ago someone discovered a protein in the blood, the Prostate Specific Antigen, that was elevated in the blood stream of prostate cancer patients. It was high when cancers were diagnosed, went down as the cancers were treated, and then rose again when cancers recurred. It was a good marker of cancer activity. Eventually doctors thought. “What are we waiting for? Why not use the PSA test to find cancers before they spread? Let’s start testing every man and end the suffering!”

It was a great idea, or so it seemed based on the available knowledge. What no one knew at the time was how many harmless prostate cancers were present in the population, cancers that did not need to be found. Prior to PSA testing, almost all of the prostate cancers diagnosed were deadly, for these were the patients that came in for treatment. Harmless cancers were almost unheard of.

It turned out that these silent harmless cancers made up the vast majority of prostate cancers. When PSA testing became widespread these were the cancers that were most often found. To the surprise of everyone prostate cancer diagnoses increased 600%. There was an exhilaration in the medical profession as people considered how many lives they were now saving due to early diagnosis.

The exhilaration soon faded. It turned out we weren’t saving very many lives at all. The prostate cancer death rate barely budged. In spite of the 6 fold increase in diagnoses the death rate declined a pitiful 5%.

To make matters worse, we soon learned that we were doing more harm than good. As we could not (and still cannot) tell which cancers were deadly, doctors treated every cancer they found. Thousands, if not millions of men with harmless cancer cells in their prostate glands had their prostates removed. Given the extremely high incidence of long lasting complications from the surgery, such as impotence and incontinence, incredible harm was done in the effort to save lives. Most studies suggest that 50-60 men were harmed for every life saved from PSA testing.

I realized the potential for this harm early on. I never endorsed or recommended routine PSA testing for my patients. Over and over again, day after day, with patient after patient, I explained the potential harms. For nearly 2 decades patients argued with me. Some patients got angry. They told me stories of friends and family members who had died from the disease and accused me of not caring. Many left my practice, including some with whom I felt particularly close. It was not easy being a dissenting voice.

It is only in the last few years that the majority of medical societies have accepted the reality that we do not have a good screening test for prostate cancer. PSA testing is no longer recommended.

People are finally acknowledging that the law of unintended consequences once again has come into play. The desire to do good resulted in a great amount unforeseeable harm.

The lessons of the PSA test have far reaching applications. Our society has many ills that plague us, from poverty to gun violence. Debates rage in legislative halls and internet forums. The cry to “DO SOMETHING!” resonates with all of us. It is frustrating to see others suffer needlessly. We want action and we grow tired at the perceived inaction of our leaders.

The prostate cancer story serves as a reminder, we can do much harm in the pursuit of doing good. Simple solutions do not always exist, and we would be wise to proceed slowly as we search for answers. 

Bart

Olympic Burnout

The Olympics are back, bringing with them stories of incredible effort, devotion and sacrifice. Some champions will ascend from the depths of anonymity, while some anticipated winners will fall spectacularly short of the goal. All who contend worked hard, all have exceptional skill and talent. All are possessed with single minded dedication to their sport, all have sacrificed greatly in pursuit of their goals.

These sacrifices aren't limited to the athletes. Each Olympiad brings stories of parents giving everything they could to support their child's dream.  Over and over again we are told tales of families who relocated so their children could train in the best facilities with the best coaches, who borrowed against or spent their life's savings, or who gave up careers and relationships in order to commit hours taking children to and from practices and competitions. The impact on families is immense. Their are neglected children who grew up in their sibling's shadow, who dealt with their parent's frequent absences, and who did their best to make do with a too small portion of parental attention.

I wonder if it’s worth it.

The winners often declare that winning justifies all of the pain, all of the sacrifice, but does it?

Most winners are quickly forgotten. (Quick- name one of the six US men’s track and field gold medalists from 2016.) Non-winners, all of whom make similar sacrifices, receive nothing in return for their efforts. When their 15 minutes of fame are over they often have little to show for it. The hours spent away from family and friends are lost forever, the pains and scars from injuries endure for a lifetime, remaining long after their brief Olympic moments fade out of memory. It seems a very high price to pay.

Perhaps I am growing cynical with age, but winning doesn't mean that much to me anymore. My earthly achievements do not reach Olympic proportions, but I have had moments of fame and success. When I look back on things that I have won, Chess trophies, Academic honors, and over $100,000 on multiple television game shows, I realize that in spite of the momentary elation I felt at the time, none of these "wins" made a significant difference in my life. Most people I meet have no knowledge of the awards from my past. What matters are not the things I have won but the person I am and the person I am becoming.

It is faithfulness and character that matter the most. There are no medals and trophies handed out for being a better person each day, but I believe that if I sacrifice myself daily working to be the person God wants me to be, if I focus my eyes on eternal things and strive to love God and others with all of my heart, that none of my efforts will be wasted. To me, this is the prize worth giving my life up for.

Bart

A Morality Lesson from The Beatles

Musical careers can be over in an instant. To find proof of this one need look no further than the Wikipedia entry for winners of the Grammy award for best new artist. There are many one-hit wonders on the list (Starland Vocal Band anyone?) In this context it is amazing that a single band placed three albums on the list of top 150 albums sold in 2017. Every more remarkable is that each of the albums was released in the 1960’s. The band was the Beatles, and there music is still popular over fifty years after they invaded America.

While their music has endured some of their lyrics now seem terribly out of date. Consider these lyrics, written in 1963-

Oh yeah I tell you somethin'

I think you'll understand

When I say that somethin'

I want to hold your hand

It may come as a surprise to the current generation but there was a time when holding someone’s hand was a big deal. When I was a teenager it was universally recognized that hand holders were a couple, paired up and off the market. As a result reaching out and holding a girl’s hand was a risky step. Rejection was a possibility. You didn’t hold hands with just anyone, trying it early on a first date was a bold move. Hence the song lyric.

We live in a different time now. Forget holding hands, kissing goodnight or other innocent expressions of affection and interest. Gradual progression in intimacy is a thing of the past. Single people today are jumping the line and skipping steps. People today are engaging in the highest form of physical intimacy with complete strangers.

A recent survey of sexual behavior in America reveals just how far we have fallen. A study published in "Review of General Psychology" discovered that college aged individuals reported twice as many hookups (casual sexual encounters) than they did first dates. According to the book Cheap Sex, when asked at what time in their relationship sexual intimacy began the most common answer was “before we started dating.” What a disheartening revelation this is. My generation was more cautious about hand holding than the current generation is about having sex!

I have seen this attitude expressed by patients I have seen in the office. Not too long ago I met a young woman who reported 15 sexual partners in the previous year. A man in his 40’s shared with me that he had no interest in marriage. He could have sex almost anytime he wanted, thanks to apps like tinder and women who were willing to have sex at the drop of a hat. With sex so easy and cheap he reasoned, there was no need for commitment.

Casual attitudes about sexual intimacy pose a significant threat to marriages. When sex can be had free from commitment, when it can be had with little emotional investment, one of the most powerful motivations for commitment is lost. When intimate relations can be had with strangers there is less interest in intimate relationships. Marriage becomes less essential, less valuable and less important.

Society has advanced in many ways, but there is no question that when it comes to attitudes about sex things have gotten worse. 

I hold out little hope for change. Reversing the trend of increasingly casual sex will require a restoration of old values and a willingness to challenge the attitudes of the world in which we live. Parents will need to teach their children that intimacy is special, that monogamy is desirable and that casual sex is wrong. Moral people need to model for others a commitment to intimacy that places a priority of saving oneself for marriage, of maintaining the sacredness of the marriage bed and that denounces those attitudes and behaviors that threaten it.

The future of marriage depends on it.

- Bart

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