I am currently reading The Help by Kathryn Stockett. I saw the movie first and as I read the book it really is true the book is better, even though the movie is very well done. For those who haven’t done either one, the story is about a young white woman in Jackson, Mississippi who decides to write a book that tells the stories of African American maids working for white families in Jackson in the early 1960s. But the book, like her book, is mostly about those women and the truth of what their lives were like.
As I experience their lives in the midst of the novel I have been thinking about the ethical issues that were going on during the turbulent times of the civil rights movement in the sixties. The major issues revolve around what it means to be human and how one human being should treat another. That resonates with what is at the heart of many of the issues we face in bioethics today.
Aibilene is the first of the maids to agree to tell her story. Interestingly she is a woman with a strong Christian faith who writes out her prayers to God and sees him answer as she expresses her concern mostly for others and occasionally for herself. She models virtues of love and compassion while hurting from the injustice of life in a world where she is not seen as a person of full moral value. She is not perfect, but her virtues and endurance under hardship demonstrate a humanity that touches me. It is amazing that as a society we could have told her she was not fully human.
How many are being told today that they are not fully human by the things our society chooses to do?
A recent article in Toronto’s National Post tells of the experience of Dr. Rosanna Weksberg, a University of Toronto geneticist, when she presented a talk on the need to study risks associated with IVF (in vitro fertilization) to the Canadian Fertility and Andrology Society. Her talk related her experience in seeing an increased number of children with rare genetic disorders among children conceived by IVF. Some of those disorders are seen as much as 10 times more often in children born by IVF.
She expressed her concern that follow-up studies of children born by IVF are needed. The reception from the meeting of fertility specialists was polite, but no interest in her proposal for study was expressed. She said she has been trying to find fertility clinics willing to partner in studies of children born with the help of reproductive technology, but has not found any willing to work with her. A spokesman for the fertility society said they were interested, but that clinics could not afford to fund research.
In the United States assisted reproduction is a 3 billion dollar a year industry, but like in Canada there is no accurate information on the risk of genetic disorders, birth defects, or other increased health risks of the children produced by these procedures. Our culture has set apart everything having to do with sexuality and reproduction in a domain protected by privacy. That protection is so complete that it causes assisted reproductive technology to be entirely unregulated and makes any attempt to study the outcomes of the children produced exceedingly difficult. We need to recognize that, even though privacy in reproductive decisions is important, people cannot make responsible decisions without good information. Those contemplating the use of assisted reproductive technology need to know what the risks are for the children they bring into the world. They owe it to their children.
Recently I have been impressed with how much there is for those of us who are involved in bioethics to learn from those who study other areas of ethics. Business ethics in particular has a lot to offer. A recent article in The Age discusses a book titled Blind Spots written by Max Bazerman, a professor of business administration at Harvard Business School, and Ann Tenbrunsel, a professor of business ethics at the University of Notre Dame, that discusses the concept of unintentional ethical misbehavior. They talk about how we can behave unethically without being aware of it by excluding important and relevant information from our decisions.
One of the examples in the article is medical. It involves a person with cancer who goes to a surgeon who recommends surgery and then to a radiation oncologist who recommends radiation therapy. It could appear that each specialist is being intentionally self-serving, but they suggest that it is possible for both specialists to genuinely believe that their treatment is superior. They can fail to realize that their opinions are biased by their training, incentives, and preferences.
It made me think about how I may do the same thing. As a family physician I have a bias toward treating things I can diagnose as medical diseases with medicines. I try to incorporate other things such as counseling and physical treatments such as exercises and physical therapy, but since those are not the things I was trained to do, I may not use them as much or as well as I could. It is easier and more comfortable to prescribe a medicine. To make ethically sound recommendations about what is in a patient’s best interest we need to be aware of our own biases and be sure to encourage input from others who can see the patient’s needs from a different point of view.
There a lot of ethical concerns about stem cell research. Many have to do with the destruction of embryos for embryonic stem cell research. Those of us who oppose embryo destructive research frequently promote the potential for adult stem cell research as a better and less ethically problematic alternative. But adult stem cell therapy has a different problem. It is becoming the most recent version of snake oil.
While legitimate research involving adult stem cells should be supported, everyone from Texas Governor Perry to Indianapolis Colts quarterback Peyton Manning have been getting unproven adult stem cell treatments outside of valid research protocols. Why would otherwise intelligent people subject themselves to unproven and potentially risky treatments?
Part of it may have to do with our human tendency to believe that something is true when we strongly desire for it to be true. Our desires can be so strong they cloud our ability to reason and there are plenty of people who understand they can take advantage of that for their own profit. They sell everything from snake oil to mangosteen juice to stem cells to people whose desire for a cure makes them vulnerable.
Another part may be our society’s unrealistic belief that scientific medicine should be able to cure everything. Researchers’ hopeful expression of what may be possible with treatments such as stem cell therapy can make people with medical problems for which there are not effective treatments susceptible to trying an unproven treatment because of that potential.
Then again there is always the possibility that an unproven treatment may work. Snake oil was actually a traditional Chinese remedy that used the fat of the Chinese water snake that was high in a prostaglandin precursor to help relieve inflamed joints. When used correctly it may work. Adult stem cell therapy may turn out to be effective for some of the things it is being used for by those selling unproven treatments. But we won’t know unless those treatments are done in properly controlled trials.
Sometimes I think evangelical Christians get confused about where ethics fits in the Christian life. Why is it so important? We understand that we are fallen and that there is nothing that we can do to merit God’s favor. Salvation is a gift of God’s grace accomplished fully by Jesus’ sacrificial death. Ethics can be seen as a set of moral laws that we are obligated to live by, but which we all fail to keep. Why focus on the law when we have God’s grace? Doesn’t God accept us just as we are?
The answer is worship. While none of us can merit a relationship with a holy God through living morally perfect lives, those who have been redeemed by God’s mercy and grace desire to worship Him. Romans 12: 1-2 tells us that we should respond to God’s mercy by presenting our lives to Him in worship. We should desire to be transformed so that the lives we present to Him in worship are lives being lived in conformity to his good and perfect will. Ethics is about how we should live to conform to what is good and right. It involves living lives conformed to God’s good and perfect will. We can’t do it on our own, but we can allow Him to transform us so that we do not conform to the immoral patterns of this world, but have our minds renewed with an understanding of what is good and right.
Yesterday the Presidential Commission for the Study of Bioethical Issues announced the release of its report titled “Ethically Impossible” detailing its investigation into the U.S. Public Health Service studies conducted in Guatemala in the 1940s that involved intentionally exposing vulnerable populations to sexually transmitted diseases without the subjects’ consent. They concluded that “the Guatemala experiments involved unconscionable basic violations of ethics, even as judged against the researchers’ own recognition of the requirements of the medical ethics of the day.” Commission Chair Amy Gutmann said, “A civilization can be judged by the way that it treats it most vulnerable individuals…in this dark chapter of our medical history we grievously failed to keep that covenant.”
It seems to me that people are likely to respond to this report by saying, “Of course that was wrong. No one would do that today.” But I think the most important lesson to learn from the report is why those who approved these obviously unethical studies did so. The report shows that they justified what they did by citing the urgent need for proven methods to treat and prevent STDs in the military forces fighting World War II. They were being good utilitarians. When there is much good that can be done for many people by doing something it is easy to overlook those who are being hurt and whose inherent value as human beings is being ignored.
It happens when the need for organs to be transplanted causes people to suggest paying donors for their organs without considering the value of those who will be exploited. Or when the desire to provide cures for spinal cord injuries or Parkinson’s disease leads people to destroy embryos to use their stem cells for research. If we focus solely on what we can accomplish without being concerned about protecting those who are unable to protect themselves we fall too easily into immoral behavior.
Christians have a foundation for ethics that can be seen to be more solid that that of others who look to mankind rather than God as their source for ethics. The most direct way that we access that source of truth in knowing what is right and wrong is scripture. But how do we use the Bible in ethics? Kyle Fedler in his book, Exploring Christian Ethics, suggests that there are five ways that Christians use the Bible in ethics. His five ways are:
1) Laws – finding specific commands in the Bible to follow
2) Themes or ideas – finding principles to guide how we live
3) Circumstances – finding a similar situation in scripture
4) Character imitation – modeling after Biblical examples
5) Character formation – transforming how we live
When I ask students which of these they think is most important they commonly choose themes or ideas, and I understand why they say that. When we are searching for what is right to do in the unique issues of modern bioethics, we are commonly dealing with situations that those in biblical times never imagined. We are able to find scriptural guidance by applying themes or principles we find in the Bible to our current dilemmas.
When they say that, I suggest to them that another one of the ways may be more important. Frequently our biggest ethical problem is not that we don’t know what is right, but that we don’t do what we already know to be right. Ethics is not just an academic exercise; it is about how we live. That is where character formation comes in.
We are bent and broken people who too commonly incline toward what is wrong. We need to be transformed. That can happen when we meet in scripture the One who has the power to make all things new.
One of the foundations of medical ethics is the importance of truth-telling by physicians. The relationship between a patient and physician depends on the patient being able to trust the physician which depends on truth-telling. When I discuss this with students their expectations are for physicians to be fully and completely honest with their patients.
But what about patients being truthful with their doctors? Recently Time online referred to an article in The Arizona Republic about patients lying to their doctors. It talks about the ways that patients tend to be less than fully honest when they talk to their doctors, and how that can interfere with getting proper care.
It seems obvious that physicians should be truthful with their patients and patients should be truthful with their physicians, but we don’t always do that because it is hard. It is hard to tell a patient something the he or she does not want to hear. It is hard to tell your physician that you are not really exercising three times a week (or your dentist that you don’t floss every day). We want to please other people and have them approve of us, and we don’t want to make them feel bad.
Sometimes, though, we need to do what is hard to do what is right. 1 Cor 13:6 reminds us that love “rejoices with the truth.”
Lately I’ve been discussing infant euthanasia with some of my online students. They are impacted very strongly by the argument from mercy. When they consider an infant who appears to have “hopeless and unbearable suffering” as referred to in the Groningen protocol used in the Netherlands they are convinced that nonvoluntary euthanasia should be allowed if not required. Mercy includes a desire to relieve suffering and the argument for euthanasia says that suffering should be relieved even if that means killing the sufferer.
One of the clearest expressions of mercy in the Bible is Jesus’ parable of the Good Samaritan. In answering a question about how to love your neighbor Jesus tells a story about a man who would be rejected by those who were listening. He finds a man who is beaten and half dead and who has been abandoned by his countrymen. If he were a dog or a horse it would have been appropriate to put him out of his misery, but instead the man cares for his wounds and takes him to where he can receive further care. The man who cared for the other’s wounds is identified as one who showed mercy.
The mercy that Jesus described in the story and provided for others involved hands on care for the needs of those who were injured or ill. It sometimes involved bringing people back to life, but it never involved ending those lives. Paul Ramsey captured Jesus’ attitude well in his ethic of “(only) caring for the dying,” and those who followed in his footsteps expressed it as “always to care, never to kill” (see First Things, Feb 1992)
When we can see the importance of affirming the inherent value of every human life and search for the way to care for those who are suffering including optimal palliative care without violating the inherent dignity of that person we can be like the Samaritan that Jesus identified as a loving neighbor.
Last week I was in the “piney woods” of northern Louisiana. I had thought I would write a blog entry from there, but time and internet access were scarce, so I’m doing it this week. My wife and I were visiting her parents, Aaron and Betty. I have always enjoyed being with them and this trip was no exception. It was also a time to check on how they were doing. They are both in their 80s and have some significant health problems.
On Tuesday Betty’s visiting nurse came to see her, and it made me think of the part of the Hippocratic Oath that says “Into whatever houses I enter, I will go into them for the benefit of the sick.” Physicians don’t take care of their patients in their homes very much any more. There are good reasons why things have changed, but there are things that have been lost.
The nurse who comes out to see Betty is becoming part of the family. They offer her tea and cake and Aaron teases her like he does his daughter.
In the sterile environment of the hospital or office a patient can become a diabetic or an arthritic or a stroke victim. In her home she is the person she really is and it is harder to miss that. Those of us who care for the sick need to remember that what we are doing should be for the benefit of those we care for. Those who receive our care are real people with homes and families who are welcoming the physicians and nurses and others who care for them into their lives just like they would welcome us into their homes.
We need to enter into their lives as respectfully as we would enter their homes and realize we are being accepted as a part of their family.