The Physician and Chaplain Are Kin

One of our good family friends has been in the hospital the last several weeks, and I’ve gotten to spend a lot of time with her. She is in her eighties and regards me as her “grandson by choice,” and I remember fondly visiting my grandparents in my high school years and listening to her vivid stories and witty humor. She has a firecracker personality and that shines through even though she has a number of medical problems.

One day this week, I went to see her at breakfast-time, and I offered to continue to help feed her eggs and coffee. She declined, saying that she was sleepy. I knew the food would be good for her but felt at that instance I should put down the plate and just sit quietly with her as she drifted off to sleep. The conditioned impulse in me wanted me to jump and run off to “get some work done.” But I knew that what I was doing was a key part of the healing process, an important part of medicine. My presence in the room had an impact on her allowing her to sleep peacefully. And her presence with me allowed me to reflect on things that I’m often too busy to think about it.

Unfortunately, physicians often neglect these very human interactions in their rush to analyze the latest data and strategize about the next procedure. But as leaders of the health care team, I believe it is required for them to be aware of the spiritual health of their patients. Over the course of the morning a half dozen nurses, occupational therapists, and respiratory therapists scurried in and out of the room. All of them were polite and technically adept, but none of them really understood the real situation of an elderly woman over 30 miles away from her home sick in the hospital. Of course, it is the physician who sets the tone for awareness of the patient’s human situation. I was beginning to think that the best thing for this sweet lady was for her to return to the smaller, rural hospital for the sake of her spirit.

Many people write with regret on how the medical profession has become a technical endeavor almost void of spiritual insight. The colleagues of Hippocrates didn’t just draw up some guidelines for medical practice but instead swore an oath before the gods because they knew the gravity of their profession. Likewise, the Christian disposition of medicine in America has historically coupled church charity and chaplaincy with medicine because it takes into account the spiritual well-being of the sick and the injured. I pray the physician and chaplain shake hands and once again embark on this healing endeavor together.

Addendum: Today, I asked for a Gideon Bible to read to my friend. There wasn’t a Bible to be found on the entire floor, even at the other nurse’s station. The nurse said, “This isn’t a hotel.” I replied, “I think you need it more here than at a hotel.” To her credit, she agreed.

Finding the right ethical boundaries

In last week’s blog I mentioned that once an ethical barrier is broken we tend to pursue the breach as far as we can. I was trying to say that our nature as fallen human beings requires ethical boundaries to keep us from doing things we should not. Another example of that comes from Israel where a person is undergoing sex reassignment surgery to be changed from being female to being male. This person has requested the preservation of ovarian tissue for future reproductive use. Since this was denied by the Israeli Ministry of Health it has been appealed to the Israeli Supreme Court.

Ravitsky and Heyd argue in a commentary in Bionews that the reproductive rights of transgender individuals and their reproductive autonomy through the use of available fertility preservation techniques should be acknowledged. They base their argument on this case not being significantly different from things that have already been ethically accepted. They note that the Israeli Ministry of Health already considers sex reassignment surgery to be a legitimate medical procedure and that they allow IVF with donor gametes and surrogate mothers. They argue that having the social father of a child be the genetic mother of the child would not be ethically different than those situations that have already been accepted. They do express concern that there could be some psychological impact on the child, but suggest that having your social father be your genetic mother is no more confusing than having two male or two female parents. The door has been opened, so why not go through as far as possible?

It is interesting to think about what ethical boundaries have been broken to get to this place. One has to do with the acceptance of gender reassignment. If we see ourselves as people who have been created by God who has known us before we were born and loves us just as we are, it is hard to justify surgically altering our sexual identity. If the sexual reassignment is not permissible then the rest of this does not come up. Another has to do with our concept of procreation. If we see children as a gift from God, intended to be given to a husband and wife as a result of the physical expression of their love, rather than the result of a person’s presumed reproductive rights, then the use of third party gametes and surrogate mothers are outside of the permissible ways if creating children and the rest is not an issue as well. If we clearly draw the ethical lines on more basic issues then it is not hard to see that it is wrong to create a child whose father is also the child’s mother.

Life unworthy of living

Sometimes we need to remember the past. Of course that is what historians try to teach us. The recent translation into Italian of the 1920 German book Allowing the Destruction of Life Unworthy of Living by Karl Binding and Alfred Hoche prompted a reminder by Italian historian Lucetta Scaraffia about how the central idea of the book played out over the next few decades in Germany (see Washington Post article).

She suggests that the history of that idea is relevant to current bioethical issues. Some of those have been discussed recently on this blog. A few days ago Joe Gibes wrote about decisions to abort fetuses found to have major abnormalities such as Down syndrome. Back in December Jon Holmlund wrote about the use of PGD to diagnose embryos with major genetic disorders so that parents at risk for having a child with such a disorder could choose to give birth to a child without the disorder and not bring embryos with the disorder to birth.

Both the practice of aborting fetuses with a major disorder and doing PGD to choose which embryos should be brought to birth to avoid giving birth to a child with a genetic disorder involve the concept of a life unworthy of living that Binding and Hoche wrote about. If we make a decision to abort a fetus with Down syndrome or even one with a more serious disorder we are making a decision that the life of the person who that fetus will be is not worth living. If we choose to create multiple embryos and choose to implant those who do not have a serious genetic disorder so that they can live, but choose not to implant those who have the disorder so that they will not live we are saying that the lives that would be lived by those embryos who are discarded are not worth living. Whether one believes that and embryo or a fetus has full moral status or not they are unique individuals who have live that they would live if they are allowed to. Not allowing them to live those lives due to the presence of a disorder is saying that those lives are not worth living.

Remembering what happened in Germany helps us remember what a serious thing it is to say that a person’s life is not worth living. The idea that Binding and Hoche wrote about began as a philosophical concept, but it was embraced by the German government under Hitler as a reason for German physicians to put to death mentally deficient children whose lives were thought to be not worth living. Later that was expanded to large numbers of Jews and others whose lives were not thought to be worth living. The experience in Germany helps us to see that the idea that there are people whose lives are not worth living depends on a negation of the fundamental idea that every human life has inherent value. As Christians we understand that this value is due to our being created in the image of God. Even for those who do not have that understanding the inherent value of every human being underlies the concept of universal human rights that has become the foundation for global justice.

The German experience reminds us that there are some lines that we must not cross. One of those is saying that another human being has a life that is not worth living and using that as the justification for ending the life of an embryo or fetus.

FMRI and Normal

Recently I was researching functional magnetic resonance imaging, both for a post on this blog and an article that I am writing for The Best Schools blog. I wanted to look at where fMRI has been used in the clinical setting, and was looking through Functional MRI: Basic Principles and Clinical Applications (2006), which was a very helpful book on the subject. Chapter eight was on “Applications of fMRI to Psychiatry.” In several places the chapter kept referring to testing a person with a particular mental disorder compared to a “normal” patient, but the chapter provided neither a quantitatively nor qualitatively definition of normal. I am not sure if I am missing a technical definition here, or if the definition is assumed.

Brain scanning technologies, such as fMRI, are qualitative measurements. This means your readings are meaningless unless you compare them to something else, preferably a baseline from the same patient. For example, the chapter on “FMRI and Clinical Pain” mentions that fMRI is a good tool for measuring acute pain, but is not as helpful for measuring chronic pain. With acute pain, one can take a baseline reading of the patient while not feeling pain. Then by inducing pain, usually through touching the site of acute pain and an image of the brain can be taken showing what parts of the brain became more active when the pain occurred. In this way, doctors might be able to classify the pain or develop a treatment to reduce the pain. Chronic pain is different because doctors cannot take an adequate baseline (no pain) to then study the neurological response to inducing the pain.

The chapter on psychiatry, however, compares patients with autism spectrum disorder, or attention deficit disorder, or schizophrenia, or manic depression or obsessive compulsive disorder with brain scans of normal patients. Since this technique relies on a baseline for meaningful information, the lack of clarity on what is meant by “normal” makes it difficult to interpret.

Now, I am not saying that the author of this chapter is a eugenicist, nor am I saying that the field of psychiatry is bunk. Furthermore, I am not saying these issues do not having a neurological component to them.  I, actually, am concerned with scientific method here: Are researchers able to obtain meaningful data from these scans when the baseline is 1) a different person from the patient (similar to chronic pain), and 2) is seemingly subjective?

To the authors’ credit, they do point out that as of now “the clinical utility of fMRI to patients has thus far been limited, as no findings have been shown to be diagnostically specific for any psychiatric illness or treatment. Although many hospitals and research facilities complete MRI on psychiatric patients, this information cannot, as yet, be used reliably to generate a psychiatric diagnosis; however scans often are used to rule out the presence of a neurological illness” (185). They seem to be careful not to overstate their case. This is careful science, which is good, but the issue is what is meant by the comparison to normal.

(By the way, neuroscience is an active field. If new research has come out about diagnosing psychiatric disorders, please let us know in the comments section.)

I do not want to make the mistake of quote hunting especially because the chapter is very thorough, but I did want to give a sampling of what I mean by comparing to a “normal” subject. Some of the findings are reasonable, but with others, it seems like the only conclusion that can be drawn is this person’s brain is responding differently from this other person.

Autism spectrum disorder (ASD):

Functional MRI research on autism, although limited, has illustrated that individuals diagnosed with autistic disorder demonstrate an alternate method of facial processing when compared to normal healthy control subjects… In contrast to control subjects, when autistic individuals were asked to respond with a button press to determine the emotion of a facial photograph, they again showed no activation in the left amygdalahippocampal region and left cerebellum. (186)

The patients were people who were diagnosed with ASD and are compared with “normal healthy control subjects” that I am assuming are normal and healthy because they not diagnosed with ASD or any other disorder that would qualify as a mental disorder. This was not stated, specifically, though.

Schizophrenia

Because of the severity of schizophrenia, much fMRI research has been devoted to it. One study that did seem helpful was looking at a patient with schizophrenia before medication treatments, and then after a course of treatment. In this case, the baseline is the patient, himself, so a comparison can be made. Even so, the drug was assumed to be working because the patient’s fMRI looked more similar to the control subjects.

“Mood Disorders”

Depression and bipolar disorder studies are limited because of difficulties with diagnosis. However, studies that have been done have been conducted compared to “nonpsychiatric populations.” This apparently means people that do not meet the criteria for depression, bipolar disorder, or any other psychological disorder.

Certainly there are people who are affected by any of these psychological disorders, and surely many of these disorders have a neurological component. However, I am uncertain how helpful an analytical technique that relies on comparative studies, particularly comparisons to an accepted, yet undefined “normal,” really is for understanding a disorder.

The Virtue of Human Development

New York University bioethicist S. Matthew Liao has recently proposed giving people drugs to predispose them to make decisions in favor of programs working toward climate change:

Yes. It’s certainly ethically problematic to insert beliefs into people, and so we want to be clear that’s not something we’re proposing. What we have in mind has more to do with weakness of will. For example, I might know that I ought to send a check to Oxfam, but because of a weakness of will I might never write that check. But if we increase my empathetic capacities with drugs, then maybe I might overcome my weakness of will and write that check. (1)

What Liao is talking about is something still closely tied to beliefs: the will.  Jonathan Edwards spent a good bit of his time writing about the close relationship between these two aspects of human character.  If all that was needed was a little perk-me-up to help out a sleepy donor, then we would prescribe a cup of coffee.  However, beliefs and the will are both components of human character and therefore are changed and molded by the process of maturation.  And the maturing of a person takes place in relationship with other persons, in relationship to God and in relationship to other human beings.  This is the heart and soul (literally) of the human experience.  Theologians oftentimes use the term sanctification to describe this change within the person as a result of the action of God.  This process is ultimately directed toward Jesus, the Mediator who opens the door for making the human heart living and the One who is the New Adam—the One who is human in the truest sense.  Pharmacological manipulation of human behavior seeks to short-circuit the process of human development, thereby essentially taking away that which is truly human.  Just think: if the literature describing the story of human struggle and development were eliminated, our libraries would be largely empty.  A person no longer growing in relationship with God and with others would be less human.  The manipulative means would have done great harm in pursuit of the end behavior.

The renewed interest in virtue ethics in recent years may serve to steer us away from further attempts at manipulation in favor of choosing a path of maturity.

I have always marveled at how Meda Pharmeceuticals markets their version of the muscle relaxant carisoprodol as Soma because of the name’s negative connotations.   Maybe it has no negative connotations at all.

By this time the soma had begun to work. Eyes shone, cheeks were flushed, the inner light of universal benevolence broke out on every face in happy, friendly smiles. (2)

1.  Anderson, Ross.  “How Engineering the Human Body Could Combat Climate Change.” The Atlantic,  March 12, 2012.

2.  Huxley, Aldous. Brave New World.  HarperCollins, 1932 (2006).

How nonmoral beliefs impact our moral decisions

When people try to support a belief in cultural relativism they often point to the diversity of moral practices in different cultures. One of the ways to explain how that diversity can exist even if morality is really based on objective moral values that are universal is to show how two cultures with similar basic moral beliefs can have different moral practices due to differing nonmoral beliefs. The treatment of the elderly by Eskimos is a common example. However a recent discussion in my medical ethics class reminded me that differing nonmoral beliefs can lead to differences in the ethical judgments we make as individuals as well.

The class was discussing the case of a patient with ambiguous genitalia who sought care at age nineteen wanting to know why she had never menstruated. The physicians discovered that even though the patient had a generally female body type and had been raised as being female this person had no female genitalia and was genetically male. We were discussing whether it was permissible for the physicians to withhold the information that the patient was genetically male. The class was divided with some saying the whole truth needed to be revealed and others saying that to do what was in the best interest of the patient it was permissible to withhold that information.

As I reflected on how the students had supported their positions it became clear that there was a difference in the nonmoral beliefs between the two groups of students that led to their different moral positions, even though they all had very similar basic moral beliefs. Some of the students believed that gender was determined by genetics and this patient was truly male. They were the ones who said it was not permissible to withhold the information that the patient was genetically male. The other group of students believed that there were other things besides genetics that entered into the determination of gender (such as the influence of hormones on fetal development at certain critical times in development and socialization based on the assumed gender from body type). They were the ones who thought it was permissible to withhold the information.

I had intended for the case discussion to be focused on what it means to tell the truth and whether that always needs to include the whole truth. The students’ responses reminded me how important our nonmoral beliefs are in making moral decisions.

Part 3: Caution, Compassion and Wisdom in Policy

“We should measure welfare’s success by how many people leave welfare, not by how many are added. The so-called war is not over and welfare programs are just not working.”

Last week I made the claim that we should be careful how we choose to assist those in need. This was based on four “principles” that I derived from an anecdote from my life:  Just because you think what you are doing is helping somebody, does not mean it is; Helping people requires an effort on both parts; People you help will take more than you give them and they may not stop taking; and, Temporary solutions may offer no long-term resolve.

The purpose of this week’s blog is that you do not think of me as a heartless beast. I recognize that people have needs they cannot meet. I also realize that not everyone has been given the opportunities I have. However, supporting the needs of the needy must be done with caution, compassion and wisdom. As I stated last week, our good intentions are not good enough for the societal implications.

There are now at least 77 federally funded programs for poor and low-income Americans, and their need has not gone away. These programs range from giving food aid to those in need to giving medical care to children–all of which are ‘goods’ in and of themselves. LBJ’s declaration of war on poverty produced these programs (partnered with FDR’s programs in the 30’s), which offered some temporary resolve for the basic needs of the “others” of American society.  (I think that counts as a declared war that will see no end…) But just as in all ethical deliberation, we must look at the consequences of the action, and then assess the value of the act.

While the mid-90s reform of Welfare has offered some progress and growth, the reality is partakers are not being weaned off the system. It is a benevolent service that creates a co-dependecy and not necessarily to the fault of the recipients. For a quick look into what Welfare offers those who partake, go here. Additionally, “Researchers at the Dartmouth Atlas Project and elsewhere estimate that about 30 percent of Medicare spending does nothing to make patients healthier or happier… and Medicare grew at an average annual rate of 9.3 percent over the past decade!”

Above Welfare and Medicare, Medicaid costs have grown substantially. “Spending jumped from $118 billion in 2000 to $275 billion by 2010. And even before the 2010 Health Act was passed, spending on the program was expected to double in cost to $487 billion by 2020.The 2010 law will boost Medicaid’s cost by about $100 billion a year by 2020.”

The heart of my concern is that there is a frightful similarity in the way my college roommates chose to help a homeless man and the way our society is helping those in need, without cautious consideration for the consequences on the individuals who are receiving these so-called benefits and, ultimately, on the society in which we live.

 

 

Down Syndrome and Thanksgiving

 

Despite today being the retail abomination known as “Black Friday,” I will continue in the vein of Thanksgiving and write about a person I am thankful for.

My nephew’s name is Jacob, and he has Down Syndrome. He just turned 18. He is one of the most loyal and loving people I have the privilege of knowing. He gives incredible, bone-crushing hugs. His cell phone voice mail message ends with, “Love you.” His aunt, my sister, lies in a nursing home, barely able to interact since a brain injury in June; but Jacob doesn’t care about her medical conditions, he just loves to be there with her, because he loves his aunt. I am thankful for Jacob’s example of unconditional love.

When we take Jacob out to eat, he orders french fries. And when he eats french fries, he eats them a certain way, one at a time, dipped just so in his favorite condiment: steak sauce. Lunch takes at least an hour. I am thankful that Jacob makes us slow down. 

Jacob loves music. He owns several guitars, and received a bass guitar for his last birthday. He especially loves worship music. He can strum his guitars, although a guitarist probably wouldn’t call it “playing” guitar. His singing isn’t exactly on key. Yet most Sundays he is in front of his church leading worship with the worship team. His microphone may not be turned up terribly high, but his love for Christ is at full volume. I am thankful for Jacob’s example of unselfconscious worship.

Jacob sometimes requires extra patience. His parents have made extra sacrifices. There are things he does that will drive you crazy if you let them (Is there anybody for whom that is not true?). He will never live independently, and will always require a level of extra care. But the extra care and patience are richly rewarded. And while we think we are making extra sacrifices for Jacob, I sometimes think that God sees it differently: that He is giving us an extra measure of blessing by allowing us to be with Jacob. Yet it seems that too many, when they think of “Down Syndrome,” think only of the extra work and sacrifice and limitations. Either that, or they think of a life that is not worth living. Whatever the thinking, it is both sad and frightening that in this country, about 92% of the unborn babies suspected (on the basis of prenatal testing) of having Down Syndrome are aborted: sad, because of the loss of human life through abortion as well as the loss of the privilege of being with these unique people; and frightening, because of what it says about us as a society. I am thankful that Jacob was not one of the 92%.

Reflections from the Front: For Whose Good?

Reflections From the Front: For Whose Good?

On October 26, the New York Times published a news story, http://www.nytimes.com/2011/10/26/health/policy/26vaccine.html?scp=2&sq=hpv%20vaccine&st=cseabout a recent recommendation from the Centers for Disease Control and Prevention that boys and young men should be vaccinated against human papillomavirus, HPV, to protect them from anal and throat cancers resulting from sexual activity. It is much less expensive to vaccinate only the boys who will engage in homosexual sex, but since this is hard to predict, the argument goes, we need to vaccinate them all.

Interestingly, the CDC came out with a similar recommendation for girls in  2006, but fewer than half of the girls between 13 to 17 have received even one dose, and less than a third have received all three required for efficacy.

The cost of administering the vaccine per year would be around $140 million, but the initial costs of catching up on the unvaccinated boys might approach $1 billion. The vaccine would combat several but not all strains of HPV; to provide greatest protection, it would ideally be given prior to any sexual activity. Since by age 15 one of five teens are no longer virgins, the aim would be to vaccinate prior to any sexual activity.

An October 29th editorial, http://www.nytimes.com/2011/10/29/opinion/the-hpv-vaccine-is-for-their-own-good.html?scp=1&sq=hpv%20vaccine&st=cse, tells us that it is “For Their Own Good”, and strongly encourages that all 11 to 12 year-olds receive the vaccine.

The editorialist cannot help himself. He takes a gratuitous swipe at conservative politicians (identified as Republicans in the first article), and conservatives in general for their reluctance to endorse the vaccine recommendations wholeheartedly. It is always easier to employ ad hominem arguments than it is to seriously address counterarguments to one’s own position. He fails to address:

1)       If this is such a great idea, why is the vaccination rate so low among girls, 5 years after the CDC’s endorsement? Are two-thirds of all Americans conservative, religious Luddites?

2)       Are there alternative ways to decrease the spread of HPV? What are their risks and benefits?

3)       There is no mention of abstention education, which has been proven to reduce sexual activity prior to marriage. http://www.cmda.org/wcm/CMDA/PublicPolicy2/Press_Room1/NewsReleases/2010_News_Releases/Landmark_abstinence_study_.aspx

4)       Contrary to the types of statistics generated by Alfred Kinsey, thoroughly debunked but still occasionally quoted as an authority, a true estimate of homosexual behavior in American males is probably between 1-5%. Is it really reasonable to vaccinate 95-99% of American boys for a disease that is very rare in their population?

Simplistic prescriptions for complex ailments are seldom satisfactory.

TIUBlogNumber4Vaccines.doc

The Pill Mill

My classmate Avi Viswanath posted a great article on Bioethically Speaking on the “pill mill” industry in Florida.  Pain-killer drug addiction is a big problem in the U.S., and Florida has become the hub for easily-obtained drugs.  In my own training, I encountered “Pez dispenser” physicians who gained the reputation as the “go-to” guys for medications like diet pills.  In one instance, a diabetic woman came to the office asking for diet pills that her primary care physician of many years would not prescribe her.  My attending, without preforming a physical exam, prescribed the pills.  Twice while I was training there, pharmaceutical reps came by for 20+ minute visits.  They seemed to be very friendly with the physician.

Read more about the physician-led “pill mill” drug industry at tamhscbioethics.wordpress.com.