The marketing of umbilical cord blood banking

 

One stem-cell success story has been the use of stem cells derived from umbilical cord blood. The list  (more here) of diseases treatable by transplants of such stem cells is impressive, even more so when compared to, say, embryonic stem cell treatments, which are currently used in therapies such as . . . well . . . hmmm . . . uh, let me get back to you on that one.

One gratifying aspect of the use of umbilical cord stem cells is that obtaining them carries none of the unethical aspects associated with embryonic stem cell use. Nobody is killed in collecting umbilical cord blood; after the delivery of a baby, blood is removed from a vein in the umbilical cord, causing no harm to mother or newborn.

This does not mean that there are no ethical issues surrounding umbilical cord blood. There are currently two ways to “bank” umbilical cord blood, either through public or commercial cord blood banks. The public banking option is free to the parents, strictly quality controlled, and the blood is available to any patient who needs it and is a correct match. Commercial banks, on the other hand, typically charge $500-$2000 to collect the blood, along with an annual storage fee of $110-$150; are not as quality-controlled; and the blood is available only for the exclusive (potential) use of the patient.

Ethical issues arise from the marketing tactics employed by some of the commercial banks. The premise underlying the marketing is, Bank your child’s cord blood for his or her own exclusive use, so that if your child gets a disease sometime in his or her life, we’ll have perfectly matched stem cells to treat their disease, and you’ll have peace of mind! It is not unusual for companies to advertise cord blood as “Life insurance,” or to warn that “This may be your one opportunity to save your child,” or to promise “Potential regenerative therapies from stem cells such as treatments for arthritis, heart disease, etc.”  — therapies which currently do not exist. (The quotes are from commercial websites.)

These ads are based on hype and fear: hype, because they seem to promise treatments that are not currently available and may never come to pass; fear, because they play on every parent’s concern about terrible diseases their child could contract.

(Hype and fear: aren’t those are the same tactics used to promote embryonic stem cell research?)

Embryonic stem cell research and umbilical cord stem cell therapies are ethical worlds apart in their practice, and we should aggressively oppose the former and actively pursue the latter. But we should also oppose unethical commercial exploitation of otherwise ethical therapies through false advertising. Commercial umbilical blood banks should be held to strict “Truth-in-advertising” standards, and stopped from falsely promising anything more than we know they can deliver. This might save a lot of parents their hard-earned cash.

And while we’re at it, we ought to hold the promoters of embryonic stem-cell research to the same standards of truth. This might save a lot of embryonic persons their lives.

On Licensing Abortion Clinics

 

Should abortion clinics be required to meet minimum standards for patient access, medical record-keeping, sanitation, etc., as are medical facilities in which invasive procedures are performed?  More than twenty states have decided that question in the affirmative, including Virginia, whose State Board of Health is set to vote this Thursday on licensing regulations that would affect clinics in which 5 or more first-trimester abortions are performed per month.

In noting the support of staunch pro-life advocates for the proposed regulations, the editors of The Washington Post have raised their pens in moral indignation, writing that “IF SOMETHING about anti-abortion advocates pressing for “safer” abortion clinics rings false to you, trust your instincts.”[1] The editors were specifically targeting the Family Foundation and  the Virginia Catholic Conference, arguing, in effect, that consistency demands that abortion opponents disavow any serious concern for the health of women who choose to abort their children. One cannot, the editors would have their readers believe, advocate both for the criminalization of elective abortion and for the health of women who opt for abortion.

Sadly, The Post demonstrates in this “editorial board opinion” the willingness of supposedly “upper-tier”journalists to chuck the most basic rules of critical thinking when defending some cherished social ideal or policy. Surely they know they have committed the classic error of posing a false dilemma, which assumes only two options exist when, in fact, others are possible. It is not only possible for opponents of abortion to care about the health of the abortion clinic’s clientele, but such is a present reality as pro-life pregnancy crisis centers across our country routinely demonstrate in their ministrations to the health and well-being of post-abortive women. A commitment to the sanctity of human life, most pro-lifers would argue, requires not only concern for the baby’s life, but for the mother’s as well. So, while there should be no expectation that pro-lifers would cease from their efforts to outlaw elective abortion, one ought not to be surprised to see them advocating for the health and safety of aborting mothers.

Truly, as it concerns the issue of consistency, advocates of abortion who would stand in the way of regulating abortion clinics as medical facilities are in a tough spot. They generally desire that elective abortion would be viewed as healthcare (see my post from June 27, 2011), but when it comes to treating it as such, they object. The Post’s editors are willing, they claim, to accept some regulations, but not those requiring a significant outlay of capital. To that, I suspect, many hospital administrators will simply respond “Welcome to our our world!” Meeting medical facility regulatory requirements is, no doubt, a burden, but it is one that must be borne out of concern for patient safety and well-being.


[1] http://www.washingtonpost.com/opinions/targeting-bortions/2011/09/01/gIQAS7Fa2J_story.html

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.

 

To Tell the Truth

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.”

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.

 

Of Machines and Men (Part I)

 

As part of my job, I have the privilege of participating in the delivery of many babies.  I was at one such blessed event earlier this week.  There were several medical personnel and the father standing around the bed of the expectant mother. Due to the wonders of epidural anesthesia, she was quite comfortable, despite the fact that she was in the final stages of labor.

Suddenly I became aware of what all of us were doing — myself, my residents, the nurse, even the father: we were watching a machine. The mother was hooked up to a machine that monitored both the baby’s heart rate and her own contractions. The rest of us stood and stared at the machine. When the machine showed she was having a contraction, we would all turn towards her and encourage her to push, cheerleaders for her and the little life that she was bringing into the world.  But we kept one eye on the machine, and as soon as it indicated the contraction was over, we turned away from the mother and towards the machine again, waiting expectantly for it to tell us when the next contraction was coming.

With a sense of deja vu I realized that I had observed a similar phenomenon in the ICU: doctors, therapists, nurses, even family and visitors who had no idea what the little multi-colored squiggly lines on the monitor meant, nonetheless staring expectantly at the monitor on the wall instead of at the patient in the bed.  And in my training of resident physicians, I have watched videotaped patient encounters showing them sitting in the office with the patient, staring deeply into the computer screen instead of at the patient who has come to see them.  Similarly, in their inpatient work, the residents spend a few minutes on the hospital floor seeing their patients, and the remaining hours of the day (and night) staring into a computer screen, tending to the computerized chart — the “iPatient,” as Abraham Verghese called it here.

The practice of medicine has historically been founded on the physician-patient relationship;  on that foundation has been erected an edifice of techniques and technologies, tools for medical practitioners to use in serving their patients. However, it seems that in our time the tools are beginning to attack the foundation of medicine rather than just being used by it. For a variety of reasons, the tools and technologies increasingly become the center of the physician’s attention. Instead of medical practitioners defining how the tools are used, the tools begin to define what medicine is. We are becoming what Neil Postman called a Technoloply: our tools change and determine our practice’s purpose and meaning, our very way of knowing and thinking and relating to our patients.

 

Edmund Pellegrino once wrote, “Men have always sensed that the more they forged and the more machines they built, the more they were forced to know, to love, and to serve these devices.” (From Humanism and the Physician.)

 

Next week:  Some thoughts on what we can do about the ascendancy of the machine in medicine.

 

House calls and Hippocrates

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.

Safe Passage

I came across this description of the duties of a physician, from an 1858 lecture to medical students:  diagnosis, treatment, the relief of symptoms, and the provision of safe passage.

The provision of safe passage struck me as a concept we would do well to rehabilitate.  It is an evocative phrase:  protecting and helping someone on a long voyage.  That is generally not how we are taught to think about death in medical school.  Death is failure!  It is a cliff, a precipice to be avoided, rather than a voyage that everyone ultimately has to make.  We have a tendency to approach the precipice in one of three ways:  most often, we try to keep the dying patient from falling over the edge, wrapping them up and pulling them back  from the brink with ventilator hoses and feeding tubes and intravenous drips and every heroically inappropriate medical intervention and test we can conceive of;  or we realize that there’s nothing we can do, so we abandon them;  or, increasingly, in the name of “compassion,” we push them over the edge with physician-assisted suicide.  What a difference it could make if, instead of treating death as a precipice from which we attempt to keep a patient indefinitely, we understood death as a voyage each person will have to make.  What a difference if, instead of being trained to stave off the inevitable at any cost, doctors were trained to recognize — and to help patients recognize — when the voyage is approaching, how to help patients to prepare for it, and how to help them to make it a “safe passage,” a good death for them and their families.

 

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.”