Difficult Conversations

I recently read this great article in the Journal of Pediatrics titled, “Ethical Challenges in Pediatric Medical Complexity: A Survey of Parents” by Shapiro, et al. Unfortunately, the article is behind a paywall. If you work at a hospital / university or if you have access to a library, you may be able to read it.

The authors performed a survey of 218 parents of children who had been diagnosed with severe or chronic health conditions. The survey went over ethical challenges that these parents go through in the healthcare setting with their children.

The top 3 areas of concern expressed by parents were:

1. Not always understanding the communication about life-sustaining therapies.
2. Costs associated with illness (financial stability after a devastating illness is rampant in this country)
3. Disagreement with medical staff regarding care plans

Physicians can do better here. Healthcare teams can do better here. Hospital administrators and healthcare systems can do much, much better here. Where can we find broken communication occurring?

1. Not always understanding communication about life-sustaining therapies: This happens when healthcare teams talk above the ability of a family to understand what types of therapies are occurring. Healthcare teams often talk above the level of patient / family understanding. Families aren’t dumb. They just don’t understand complex medical physiology and jargon. I would not be happy if an attorney wrote my family’s will and used sophisticated language that I could not understand. I would not understand Major League Baseball if I did not have a background in understanding its rules (with the help of someone explaining the rules when I was younger).
2. Costs associated with illness (financial stability after a devastating illness is rampant in this country): This is a tragedy in U.S. healthcare. I don’t have much to add here except to say that families should not go bankrupt in the setting of a medical emergency.
3. Disagreement with medical staff regarding care plans: I have seen such disagreements many times. Honestly, most of these disagreements (not all) resolve with just spending time talking through the issues. Sometimes families don’t understand why their child is starting a medication. Sometimes families don’t understand why a new medical procedure is needed for their child. Sometimes healthcare teams aren’t listening to parents when their child is chronically ill and really doesn’t need extra things done. This is especially the case with further procedures will not extend life and / or improve the quality of life.

The authors state the following: “For the challenges that sit more typically in the bioethics space (eg, end-of-life and life sustaining therapy decisions, conflict among families and teams, etc.) we must move beyond thinking about the acute period to recognize the residual ethical distress for years.”

I agree. One’s health or the health of a loved one is a significant part of an individual’s life. This time component increases during difficult times of illness or disease.

Love. Difficult times. Stress. There is overlap here when one considers both the medicla setting and the church setting (and of course in the setting of a mosque, temple, synagoge, etc.). Anxiety in the church setting has been studied in many situations, including here and here.

In the United States, it is fairly clear that the current political situation combined with the negative effects of social media and an increased distrust in science have aggravated the anxiety of many religious people.

For example, fealty to a political party in a church setting can emphasized by the congregation over the worship of God. Social media algorithms separate us from those who have different but perhaps rational opinions. Anti-science sentiments preached by both church leaders and non-religious leaders tear away from our understanding of the real — of the objective truth.

In a manner similar to the healthcare setting, societal pressure in relation to religion often does not communicate well, can require extensive financial stress, and can lead to disagreement about how “religious” a person must be. Media (mainstream and alternative) just show the extremes of religious and non-religious behavior. Many religions have leaders who seem to obsess about money in the setting of their promoting terrible ideas such as the “prosperity Gospel.” Not accepting any science in a religious or non-religious setting promotes ignorance, hurts other humans, and simply ignores reality.

If we believe in God, then we pretty much have to believe God is aware of objective reality. Jesus experienced and believed in objective reality, and I am a Jesus follower (for example, Mark 7: 18-20).

Thus, if one has questions about God or has unique ideas about God, I’m not exactly sure why we have to stick to wooden or fundamentalist interpretations of Scripture. If one has a new take on Christ’s Atonement or the Resurrection, I am not sure why there would be anger. That person is simply exploring or perhaps studying church history. Of course, any change in Christian doctrine (which is my religious background) that harms people mentally, physically, or financially would be a problem and not valid.

However, if one wants to explore theological or philosophical ideas surrounding God, it should not be a problem in our society and in our religious settings. Our species have been discussing ideas surrounding the divine for over 5000 years. My fundamentalist friends will be sad to know that such explorations will continue as long as our species continues to exist.

Instructions of Shuruppak

Philip Goff has recently written about this issue quite well.

Another interesting source to consider is this recent IAI debate concerning the speed of light. I didn’t find the debate that inspiring, but within the first minute of the debate, the cosmologist (João Magueijo) was very clear that science is not “sacred.” It is “…not religion, it is science.” True, but subjectivity has changed just as much as objectivity in the setting of human reality. Art, theater, music, the interpretation of history, literature — all have changed. Thus, theology also has changed.

If you think religion, and specifically Christianity, has not changed over the centuries, you would be quite wrong.

So, when talking to others about the tragedies of the human condition (illness, depression, death) or talking to others about God, we should follow the issues expressed in the Journal of Pediatrics article. We should communicate clearly and kindly, not expect money to improve our relationship with God (even if your religious leader told you otherwise), and listen well to others.

image created by Gemini Advanced