Managing Patients

Many people remember C.S. Lewis not only as a gifted thinker but also as someone who was very funny.  Funny in a typically British, understated, often-profound way.  When reading That Hideous Strength, the last book of his Space Trilogy, I laughed again and again at his many references to the National Institute of Co-ordinated Experiments.  Yes, you got that right: the N.I.C.E.  This vast array of committees and investigators would finally bring a “really scientific era” to managing society, and eventually all the ills of the country would be deciphered and cured.   And of course building this grand enterprise meant bulldozing a large part of a quiet university town—all for the sake of noble, or at least “nice,” goals.  True, one might have to keep the citizenry in the dark on what actually was going on inside the N.I.C.E., but of course this would be for their benefit.  (“You musn’t experiment on children; but offer the dear little kiddies free education in an experimental school attached to the N.I.C.E. and it’s all correct!”)  The book is great commentary on misguided human endeavors and is prescient on many of the bioethics matters of today.  But what is most entertaining is that the N.I.C.E. is indeed alive and well in the United Kingdom: the National Institute for Health Clinical Excellence, a.k.a. NICE.  More on this in a moment.

Christ and the Canaanite Woman by Germain-Jean Drouais (1784)

During the past five weeks of my Psychiatry Clerkship, I’ve seen that we are often in a position to simply do the best for patients with the little we have.  Many of our patients suffer from life-long substance abuse, others are being monitored because of signs they might harm someone, and others are there at the request of the courts.  It’s easy to fall into a “managing patients” mode of just keeping things from getting out of hand but never really helping the patient recover from his illness.  (Especially when the patio re-modeling keeps some patients from being able to go outside for two weeks.)

One of the populations that figure prominently into “patient management” is that group diagnosed with antisocial personality disorder.  NICE has dual concerns of managing resources as well as managing antisocial patients who may cause harm to society in the form of criminal activity, for instance.  NICE working groups have to come up with guidelines for handling these patients.  For instance:

Pharmacological interventions should not be routinely used for the treatment of antisocial personality disorder or associated behaviours of aggression, anger, and impulsivity.  Pharmacological interventions for comorbid mental disorders, in particular depression and anxiety, should be in line with recommendations in the relevant NICE clinical guideline.

Psychological interventions such as Cognitive Behavioral Therapy, on the other hand, were found to be wise uses of funds in working with these patients.

It is easy to click through a patient roster quickly in order to carry out management guidelines and lose a sense of the human being who is at dis-ease because of an illness.  This is why I think Christian hospitals and places of rest for the mentally ill offer something that our modern health care systems do not: their reason for being is first the healing ministry of Jesus, seeing that the ill become whole.

For more information

Another Promising Result Using Induced Pluripotent Stem Cells

Last Friday it was announced in Medical News Today that researchers at Johns Hopkins have discovered a means to fix the genetic defect that causes sickle cell disease with the patient’s own stem cells.  According to the announcement, “The corrected stem cells were coaxed into immature red blood cells in a test tube that then turned on a normal version of the gene.”[1]  This does not mean that a clinical application is imminent or that the procedure is safe.  As stated in the original abstract from Blood, the Journal of the American Society of Hematology, “the safety and feasibility of stem cell mobilization in individuals with sickle cell trait (SCT) has not been documented.”  However, the report added that “no untoward adverse events occurred in either group, including sickle cell crises.” [2]

The new treatment could prove to be revolutionary; at present the only existing therapy for sickle cell disease is through bone marrow transplantation.  However, the journal Blood reports that, “many patients are ineligible [for bone marrow transplantation] because of either the lack of a suitable donor or their underlying condition.”  The advantage of “peripheral blood stem cells” (PBSC) from the patient are obvious: patients don’t have to wait for a suitable donor – they are their own source of the stem cells.  The study concludes that, “Products from SCT donors require only minor changes in ex vivo cell processing, allowing for the use of mobilized peripheral blood as a potential source of stem cells for transplantation in sickle cell disease.”  Furthermore, as one researcher stated, “The beauty of iPS cells is that we can grow a lot of them and then coax them into becoming cells of any kind, including red blood cells.”[3]  In short, scientists believe they are now one step closer to successful stem cell therapy for sickle cell disease.

Of course, the word is still out on the success of PBSCs.  But ethicists should applaud any research that is as promising as embryonic stem cell research, but does not require the destruction of human embryos.


[1] http://www.medicalnewstoday.com/releases/235221.php

[2] There were two separate control groups with eight individuals in each group – one SCT group and one non-SCT group.  In the words of the research team, the study does “not permit the conclusion that G-CSF is completely without such risk. Our study, however, suggests that the risk is limited…” http://bloodjournal.hematologylibrary.org/content/99/3/850.full?sid=62767506-48e6-45f1-be88-b033f616fcc7

[3] http://www.medicalnewstoday.com/releases/235221.php

Scripture and ethics (and transformation)

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.

Machines on the Maternity Ward

I’m going to dovetail on Joe’s post once again.  Today, my girlfriend and I visited the hospital to see her friend’s new baby boy.  The floor was quiet as we got off the elevator.  We must have looked confused because the custodian set his mop down for a second and said, “You have to use the phone.”  Sure enough, next to a set of large double-doors was a red phone.  We picked up the phone.  “Yes, we’d like to see so-and-so.  She is here with her new baby.”  The unseen operator responded with a buzz, and magically the big doors swung open.  The big doors were there for security reasons, and I suppose they work for less than the watchman or the receptionist.  After we surrendered our IDs in exchange for “Visitor” stickers, we found the hum that was the room of the mom and her new son.  Friends and family stirred around taking turns holding the bundle of joy.  There was mom watching on, sitting up in her hospital bed.  And there was the machine–tall, flickering, and looming over the bed.  You see, she was not just the mother here; she was the patient.  I was thankful for the armoire of dark wood in the corner that lent a little softness to the room with its tiny, soft inhabitant.  After a while, the nurse entered and began to rummage around the hospital bed.  Yes!  Hurrah!  She began to untether mom from the IV bag.  Mom said, “Sure is good to get all that stuff off of me.”  Yes, I thought, maybe now she can hold her baby.

 

In Response to “Of Machines and Men”

I think Joe hit the nail on the head.  One of the reasons I’ve focused on personhood during my short bioethics career is that American physicians are increasingly unable to distinguish between the human being and the biological system.  Some deny altogether the existence of anything beyond the physical body, but others only consider the spirit or the soul to be some sort of esoteric thing about which one might philosophize.  As a result most physicians believe that if they know the medical information, perform the procedure correctly, and achieve a good outcome then they have practiced good medicine.  Tips they can gain from Abraham Verghese about interacting with the patient are icing on the cake.  An inspirational insight from Atul Gawande allows them to be reflective in their spare time.   But really, those kinds of things are for humanities professors or hospital social workers.  In the medical curriculum, we see this value system in ethics teaching that amounts to not much more than instruction on managing emotional responses.   “Use this phrase when talking to a patient about cancer so they will feel this way.”  “When you enter the exam room, perceive the patient’s disposition by examining facial cues and posture.”  If the physician uses a stimulus-response framework for patient interaction, then he has fallen back into the same problem all over again.  That’s why mentorship is so important in medicine: a student “lives life” with the attending physician so as to acquire his way of looking at the world, not just his skills.  That’s why the oaths—Hippocrates, Maimonides, or others—are so important: they emphasize that medicine is a covenant between two people before it’s anything else.  And, most notably, that’s why a medical practice most consistent with Jesus’s healing ministry is one which would still have something to offer if the machine and the lab report were not even there.

 

I Pledge Myself

I asked several young doctors who have completed medical school in the last 5-10 years which oath they took upon graduation.  No one could remember, and some weren’t sure whether they took an oath at all.  Really, an oath of any kind is out of place in a culture that doesn’t value making a statement that binds oneself.  There is very little agreement on what theory of medical practice to which one might adhere.  One of my professors mentioned in her Hippocratic Oath lecture that the prohibition against giving “a woman a pessary to cause an abortion” was not really a prohibition against performing abortions.   In the days following World War II, the Physician’s Oath of the World Medical Association pledged “even under threat, I will not use my medical knowledge contrary to the laws of humanity.”  Today, the American Medical Association, a WMA member, recognizes there is disagreement on the usefulness of the Hippocratic Oath, states that it’s Principles of Ethics define behavior but are not laws, and notes that regulatory agencies—which do not administer oaths—have the real means to respond to physician behavior.

Albert Jonsen, et. al’s Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine states that “physicians must avoid exploitation of patients for their own profit or reputation.”  It’s hard to understand how such a platitude is to play out in the real world if physicians do not pledge themselves to it.  I heard a doctor once refer to the lucrative nature of a pulmonology specialty as “the gravy train.”  Many frame their practice in terms of which procedures bring in income.  This seems odd; because according to this model, the absence of illness is a business failure.  As Maimonides would say, “the enemies of truth and philanthropy could easily deceive me and make me forgetful of my lofty aim of doing good to Thy children.”

 

 

Going where no man should go

In a recent article titled “Extreme Science” (August, 2011), Wired magazine broaches a topic that few mainstream publications would be willing to touch.  What could be accomplished if scientists were prepared to set aside the “moral compass” that guides them (assuming there is one)?  Imagine the advances waiting to be made.  As Wired observes, in the real world (as opposed to the sci-fi world), “Most scientists will assure you that ethical rules never hinder good research – that there’s always a virtuous path to testing any important hypothesis.  But ask them in private… and they’ll confess that the dark side does have its appeal.”  http://www.wired.com/magazine/2011/07/ff_swr/

For example, scientists could separate sets of twins at birth in order to control and monitor their individual environments right from the start.  The gain from such an experiment is a possible solution to the nature vs. nurture dilemma.  Think about a twin study in which both individuals are eventually identified as gay, regardless of their distinct upbringing.  This could offer proof that homosexuality is all nature and not nurture.  In another example, Wired considers the possibility of “womb swapping,” i.e., switching “the embryos of obese women with those of thin women.”  Again, the experiment would determine whether environment or genetic factors determine an individual’s weight.  Then there is an experiment right out of a science fiction movie, one that cross-breeds a human with a chimpanzee.  Wired reports that the technique would be “frighteningly easy” and it would teach us much about human development.

But what actually prevents unethical research from happening?  It could be argued that these experiments are blatant violations of individual autonomy.  But the fact of the matter is that human autonomy is already disregarded with other procedures (e.g., human embryonic stem cell research, abortion, etc.).  In other words, what is the essential moral difference between destroying an early embryo in lieu of subjecting it to controlled research?  One may even maintain that the twins, separated at birth, are at least alive as opposed to embryos that are destroyed.

Then again, one could argue that the main difference is that twins will eventually come to understand their situation and realize that their autonomy has been violated.  On the other hand, destroyed embryos will never know their fate.  Fair enough.  But if morality is governed by utilitarian concerns, as it already is, it would seem that the value gained by subjecting embryos to questionable research outweighs their future concern for autonomy.  And if “awareness of one’s autonomy” is the key moral criterion, then research could be extended to any human lacking awareness (e.g., newborns, coma patients, etc.).

In short, humans have the rational capacity to consider all options to achieve an objective.  Humans have also demonstrated a natural tendency to push the moral envelope, to give priority to what can be done over what should be done.  Time will tell whether experiments which are now considered unethical will one day be the norm.

The Tragedy of Bioethics

At last week’s CBHD conference, a few of us were treated to a unique “Drinking-from-a-firehose” experience.  Jerome Wernow gave a talk with the eyesplitting title, “Bioethics:  Facing a Philosophical Theology of Tragedy and Mystery.”  Intrigued at the title in the conference brochure, but having no idea at all what it might refer to, I slid into a seat in the classroom where Dr. Wernow was to speak, prepared to be befuddled.  Instead, in the space of about about twenty minutes, those of us in the room were given an alluring glimpse into a poignantly beautiful picture for doing bioethics that alters what I see when I look at a patient.

I will attempt to present gleanings from the rich feast that was Dr. Wernow’s talk.  The early 20th Century Russian philosopher Nicloas Berdyaev wrote,  “There can be no moral life without freedom in evil, and this renders moral life a tragedy and makes ethics a philosophy of tragedy.”  As anybody who has witnessed the anguish of those who seek an ethics consult can attest, as anybody haunted by the dark questions our modern technology raises would agree, in bioethics all decisions are fraught with tragedy;  ethics consultants are actors in one-act medical dramas that are tragedies.  And tragedy is neither lessened nor assuaged when good and evil alone are used in bioethics’ calculus.  Our knowledge of good and evil is damaged, the product of a lie (“your eyes shall be opened, and ye shall be as gods, knowing good and evil“); it was in the very act of grasping for the tree of that knowledge that we were banished from the tree of life.  When we approach people whose stories have taken a catastrophic turn and we wield only the calculus of good and evil, our bioethics is left lifeless, empty, and tragic.  According to Wernow, to address tragedy we must turn to mystery, to “Mystery-revealed:” Christ, in whom is Life.  The question we ask as Christians doing bioethics is not just, “What is good?” but “How do I bring eternal life into this tragedy?  How do I bring the mystery of Life into the abyss?”

There was an amazed silence in the little classroom when Dr. Wernow finished.  Unfortunately, that is all I can leave the reader with.  I am not even sure that in my pathetic summary I presented Dr. Wernow’s vision remotely accurately;  his ideas poured out quickly and passionately, I could take only skeleton notes, and he has not as yet published an article or book that sets out the implications of the “Philosophical Theology of Tragedy and Mystery.”  But I sure love his vision of bioethics-as-drama instead of as sterile philosophical specimen;  and I can embrace the quest to bring the Mystery of Life into tragedy as a robustly and profoundly Christian way to engage and immerse myself in the tragedies of a fallen world.

 

Ethics Ruminations from the Front, #1, Carolyn

John Kilner is one of my heroes—brilliant, erudite, engaging, willing to take on today’s ethical challenges. He also was my mentor while doing graduate study. I owe him. So, when he asked if I would consider working on a CBHD ethics blog, I didn’t hesitate—very long anyway—to agree.

I am a neurologist, active in a busy clinical practice. Additionally, I chair a hospital ethics program. My third job is as a group practice medical director supervising approximately 70 doctors in their work. My parents were missionaries. I am happily married and we have three of the world’s most beautiful, intelligent, grown children. I hope to reflect on life from these perspectives.

Carolyn

Carolyn was a dynamic, energetic, intelligent woman who ran libraries, administered programs, taught college students, and in a good way was always a force with which to be reckoned. She retired in her late sixties, still near the top of her game.

These days, at age 84, she lives in a nursing home, is doubly incontinent, wheelchair bound and often confused. She misses social nuances, and usually does not know the correct day. She doesn’t ask for assistance, she barks out orders. She is nearly deaf, and says embarrassing things to her family members during quiet moments at social functions. Her goal each morning is to make sure that someone lays out her clothes for the day. Not knowing what she will wear on wakening weighs heavily on her, but this burden is relieved by seeing the pants, T-shirt, (she no longer wears a bra), shirt and sweater (she’s always cold), on her closet door.

She has a Kleenex and Vaseline lip balm obsession, and can’t be without either of these. She cannot carry on a conversation.

What a tragedy, some would say. She will die without dignity, having lost her intellectual faculties, control of her bodily functions, her sense of humor, and her social skills. Isn’t her continued existence a waste? We could use Carolyn as a poster child for why we should allow mercy killing, some might say. She is using up financial resources and her loved ones’ limited time and energy. She is directly helping no one, and each of her days is just like the last.

Her son notes that as deaf as she is, she never wants to miss church. She has lost her singing voice, but she hums or softly mouths lyrics to the hymns. She grouses and commands, but she often eventually says thank you. She doesn’t read scripture anymore, but she completes verses aloud that others start. Whenever she sees him, the first question she asks is about his wife and her health.

He relates that his daily visits with his mother remind him that it’s not about him and that God uses hard times to grow our patience and character. He remembers the untold hours of teaching, care and prayer she poured into his life, and realizes that he could never repay this debt. He has come to realize that God wants his children to grow more and more into God’s likeness, not have easy, fun lives. He reflects that his mother may be helping him grow closer to God now than she ever did when he was a child, a young adult, or even a middle-aged man. The son is in no hurry to see Mom go home to be with Christ. He has come to see that God’s timing is best, and that God doesn’t abuse his children. More than ever, he is learning that God is all-wise, all-powerful, and all-loving.

I am Carolyn’s son.