We’re having the wrong conversations

This is a major change for me today. I have used my blog to share medical science, health law analyses, public health information, and health care policy for more than a decade. I try to minimize its use as a soapbox or opinion page. But, today is different. My heart is heavy. I see things going in a dangerous direction and prominent people are gaslighting the public, distorting the truth and misleading the public.

I am watching the perversion of labels to achieve extreme positions legislatively. For example, “medical freedom.” Who couldn’t be in favor of that? Yet, how it has evolved is to give a minority of privileged persons complete latitude to do as they please without regard to the fact that they live in a society. Their medical freedom has come at the expense of most of the rest of us. Early on in the pandemic, I often was asked, “why not just have old people stay at home, and let the rest of us get back to our daily lives?” My answer was: “Many ‘old’ people have very active lives. Many of these people still work. Many volunteer and provide important services at schools and for non-profits. Even for those fully retired, they want to go to the grocery store and get their hair done. Many want to go to church or synagogue or temple. They still have to go to doctors, the dentist, the pharmacy, hospitals, and the eye doctor. Many are grandparents, helping out their adult children who are working full-time by babysitting, taking grandchildren to school, or helping them with homework or remote classes when schools are closed. Many older people also rely on these younger people that you suggest should get on with their lives and get exposed to a dangerous virus or infected. They may provide older people with transportation; they work in doctors’ offices and grocery stores. They provide home repairs and housekeeping. And, many older people are in assisted living or nursing homes. Younger people are providing their meals, their medications, and assistance to these older people with activities of daily living.” It may have seemed an innocent question, but it reflected a cruel insensitivity to older people who contribute greatly to society and the economy.

“Medical freedom” also reflected a disregard for the frail, the infirm, the disabled and the immune compromised among us. It really is a question as to whether we value all lives or just some lives. It resulted in immunocompromised persons having to choose which activities (activities that most of the privileged medical freedom advocates generally wouldn’t think twice about) they were willing to risk their health or even their lives to do.

I provided advice to a number of people who fell into this category – a father of young school-aged children who was on immunosuppressive medications due to a liver transplant; a mother of school-aged children going through chemotherapy for breast cancer, a person with a severe immunodeficiency that meant she could not make antibodies on her own or in response to infection or vaccination, and another who had two immune deficiencies that would mean she was very susceptible to viral infections and unlikely to be able to clear the virus on her own, just to name a few.

These people were not worried about whether they could keep themselves safe at home by themselves. They were worried about whether their children were going to be at high risk of exposure at school and then bring the virus home to them as they cared for their sick children. It was not as much a concern for their own wellbeing as a concern of leaving the child orphaned. They were not worried about being safe at home, but rather what would they do when they eventually would need medical attention and have to go to a doctor’s office or emergency room where there are almost certain to be infected persons and few if any people wearing masks. They were worried that a hospitalization could mean death for them, not from their underlying health condition, but because there would be people infected at the hospital that could easily transmit the virus to them, including the people caring for them.

As a long-time health care executive, I have always worked to make hospitals safer for care for patients who were in need of hospital services than it would be for them to be cared for at home. Now, I was having to counsel people who were putting off getting needed care, trying to determine when the virus would be at the lowest circulating levels in the community or how we could provide the care they needed at home, even though less desirable under normal circumstances. Working with one of these patients, we kept her from getting infected for four years. Ultimately, she had to see an ophthalmologist for a significant eye problem. We discussed all the measures she could take to protect herself, but in the end, acknowledged that we can’t control who is also in that office and whether they are being compliant with infection control measures. She wore her N95 mask. We tried to time her appointment to when the least number of people would be in the office. She got infected. She became severely ill. She was hospitalized and was in great distress for a protracted period of time. She is now home and still ill, barely able to move about the house of climb stairs, or even take the trash out. Someone in that office exercised their freedom not to wear a mask or not to stay home with minor symptoms, but someone else lost the very little freedom she had left.

So that these privileged folks can have their “medical freedom,” we have young children getting dangerous virus and bacterial infections that we had all but eliminated with highly effective, safe vaccines. We now have had more measles cases in just the first four months of this year than we had in all of last year. Some of these children will die for some privileged people to have their “medical freedom.”

We live in a society where we all abide by certain rules because they benefit us all. I might want the “freedom” to throw a loud party in the middle of the night with a live band and for all of us to spread out on my neighbors’ lawns and the convenience to just leave our trash on the ground for someone else to pick up, but we have rules about all of these things so that my neighbors won’t do the same things to me and my property. We give up many “freedoms” (the right to drink excessively and then get behind the wheel of a car, the right to let my dogs run freely around the neighborhood off their leashes, the rights to walk into certain restaurants without shoes) because it keeps us all safe or promotes the efficient functioning of society. But there is an alarming self-centeredness that expresses itself through mantras like “medical freedom” in the disregard for others, even more hypocritical when some promoting this philosophy proclaim their Christian values.

These same people promoting “medical freedom” are actually working hard to restrict medical freedoms for others by attempting to pass laws that prevent most businesses from implementing public health measures that would protect their employees and customers. Some in the Idaho legislature were not content with laws that would preclude so-called “vaccine mandates” seeking to outlaw mRNA vaccines of all types for all purposes, so that those who wanted the protection would not have that freedom to get vaccinated.

I am all in favor of competent adults having the freedom to make medical decisions for themselves. However, there need to be protections for the rest of society. If this notion offends you, consider whether you would be fine with someone with an active infectious disease that could be very serious for you or your child exercising their freedom to come to work or school and infecting you and your family. For example, are you okay with someone with hepatitis A coming to work and preparing your child’s meal at school? Are you okay with someone with active tuberculosis coming being around you and your kids? With rights come responsibilities.

I have observed how often many who promote these and other dangerous ideologies tell you exactly what they are doing by deflecting blame on others. I noted one purveyor of disinformation during the pandemic making a comment that the way to disrupt society is through public health. The context was that various public health measures taken had disrupted society, but it hit me like a ton of bricks that this likely underlies the efforts that I have seen, but couldn’t understand why at the time, elected leaders were putting doctors who were clearly pushing disinformation in various levels of government from public health boards, to state office, to even White House advisory positions. Of course, we have seen a similar strategy for other political purposes to put people with extreme views on school boards and we are seeing how that is playing out.

The latest thing that pushed me to write this cathartic blog post was the recent statement by House Speaker Mike Moyle of the Idaho Legislature that he thought that abortion bans passed by the Idaho legislature were more likely used as an excuse for the mass exodus of obstetricians and maternal-fetal medicine specialists from Idaho than being the cause of it.

Dr. Amelia Huntsberger does an outstanding job of eviscerating that argument and attempt to avoid accountability for this serious threat to health care in Idaho in her commentary in the Idaho Capital Sun that you can read for yourself here: https://idahocapitalsun.com/2024/04/16/if-you-arent-sure-why-doctors-are-leaving-idaho-its-because-youre-not-listening-to-them/.

The public may not realize how big a threat the Idaho abortion law carries to physicians and to many in the public. There are wide-ranging beliefs and opinions among the general public, and among doctors, as to when (never, not after 6 weeks, not after 15 weeks, etc.) and for what reasons (no exceptions, exceptions for rape, incest, etc.) women should be able to have the choice of whether to carry a pregnancy. There is a lot of room there for ethical, moral, religious and medical debate.

I am a life-long Republican (not what Republicans stand for today), a devout Christian (not a Christian Nationalist), and I certainly have my own thoughts and opinions on the subject. However, having zero chance of becoming pregnant myself and having raised two independently-minded, very bright daughters and having been married to a very strong-minded woman for nearly 44 years, it never occurred to me that I should tell women what they can or cannot do or what they should or should not do; and to my great surprise, no woman has asked me for my opinion. I actually trust women to make the right decision for their circumstances with their doctor, counselors and others important to them.

I am also fine if the vast majority of voters want to set out certain limits on these elective terminations of pregnancy (i.e., the decision to terminate a viable pregnancy for reasons other than the health of the baby or the mother or what some might refer to as an “unwanted pregnancy”).

But, this is not what I want to talk about and I am not offering my two cents on whether there should be such a law, and if so, what those limits should be.

What I want to discuss is termination of a wanted pregnancy. These are very different circumstances and I think we do the public a disservice by lumping all terminations of pregnancy together as “abortions.” I have never been involved personally or professionally with a purely elective termination of pregnancy – the “unwanted pregnancy,” if you will. However, I have dealt with many people who desperately wanted their babies, but tragically something intervened. I am sure everyone reading this knows someone who was trying to get pregnant, finally got pregnant and then had a miscarriage. Perhaps someone reading this has had a miscarriage themselves. It is a terrible loss, and I don’t know anyone who miscarried who wasn’t trying to do everything they could to ensure the baby was healthy and made it through the entire pregnancy. Often, this happens before the first time the monitor is placed over the baby to allow the soon-to-be parents to hear the baby’s heartbeat or the first ultrasound that visualizes their baby moving, kicking, or possibly even sucking a thumb. These are occasions that cause parents to connect and bond even more closely with the developing infant.

But, sometimes, that ultrasound or a future one is not the cause for joy that it normally is. Sometimes, the obstetrician notices a terrible problem with the development of the baby. These can happen for all kinds of reasons, sometimes genetic, sometimes, an underlying illness of the mother, sometimes we have no idea why. It is heart-breaking for all. From my personal experience, learning that the baby would not survive until delivery, or if so, the baby would die soon after was no different from how I imagine I would feel if I was told that my living child had a terminal illness and would die within months. This is not news anyone wants to hear. Parents, siblings, grandparents were all looking forward to the addition to the family, the baby they have picked out clothes for, the baby with a crib and room all ready for the new arrival, the gender reveal plans, and the upcoming baby shower with friends and family.

For legislators to decide that that woman must now carry this baby until delivery or until the mother is at imminent risk of dying herself, with the parents, siblings, coworkers and friends being reminded everyday of the woman’s pregnancy is extremely cruel. Other than obtaining political points, what is the benefit of forcing the woman to carry a non-viable pregnancy? What is the benefit of placing the mother’s own health at risk – risking hospitalization, increased health care costs, more emotional distress, potentially her future reproductive abilities and perhaps eventually her own life? The pregnancy does not become more viable with time. Legislators are not being literally “pro-life” by needlessly endangering a woman’s life to no end or purpose – the baby still will not survive no matter how long it remains in the womb.

There are also situations where the problem doesn’t show up on those initial ultrasounds. Conditions can arise where the baby is not viable, but the mother has developed bleeding or may be showing early signs of infection. Prior to the law, women could decide whether to carry the nonviable baby or to go ahead and terminate the pregnancy since the baby will not survive with the medical problems identified. Prior to the law, when the infant was determined to not be viable and the mother was experiencing bleeding, blood pressure problems, or early signs of infection, the woman with the advice of her physician could decide whether to proceed with terminating the pregnancy to stop the bleeding, the uncontrolled blood pressure or the infection from progressing. No longer is this decision left to the parents. The legislature has taken that freedom away. Now, none of this can happen until the physician is quite certain in the ultimate game of second-guessing that the legislature has put doctors in that a prosecuting attorney, judge and jury will all agree that without the termination of pregnancy the woman would have died. The gamble if these non-obstetricians disagree is a felony conviction, imprisonment, and loss of livelihood.

All of us in medicine have been wrong in our judgment of when someone will die. I remember distinctly treating a man who was vomiting up blood. I had given him fluids, blood transfusions, stabilized his vital signs, and the gastroenterologist had identified the location of bleeding and treated it. The patient told me, “I am going to die tonight.” The man was stable. He had been in the hospital many times for this same problem and it was successfully treated each time. I knew that his underlying medical problems would shorten his life, but there was no indication that he would die that night and I reassured him as I went on to care for my next patient. Sure enough, that night, he had a cardiac arrest and died. On the other hand, I was caring for a young father with a horrible cancer. All of our treatments had failed. I very much doubted that he would survive the next 24 hours. I called his wife to tell her that she might want to come to the hospital just in case. He lived another week. As experienced physicians, we are often wrong as to the exact day and hour someone will die. We certainly don’t want lay persons deciding whether we called it right or alternatively, we should be imprisoned. To do so almost assures that we will error on the side of waiting longer. That is why doctors are leaving. It is against everything we stand for to watch a suffering patient and take no action. We treat patients to try to avoid the outcome of death in patients who are not terminally ill. To expect us to wait until someone is in the active dying process to intervene is completely contrary to our values, our motivations for going into medicine and our training.

Well, I am emotionally exhausted just from writing this. We need to decide what kind of society we want. We need to decide if it is important for the rest of us to have the freedoms we have previously enjoyed or are willing to have them taken away. Even the most strident pro-life advocate can have a change of heart when one of these situations comes to fruition with their child or grandchild. If we want parents to still have their previously held freedoms in the instances where the pregnancy is very much wanted, but the baby is not viable, we need to speak up and we need to turn out to vote. I am not advocating for or against any restrictions on purely elective decisions to terminate a pregnancy. I am trying to make the case for not making situations where the baby is very much wanted, but it is not possible, more traumatic for mothers and families and not threatening doctors with imprisonment for trying to help these people in the time of incredible hurt, fear and suffering.  

Now, back to medical science and public health…