Musings from a nursing home

 

It has been five months today since my sister had the first of many brain surgeries for a burst aneurysm. I was visiting her yesterday, and the visit prompted the following random bioethical thoughts.

Health-care payment reform – My sister is in a nursing home, and until recently had been receiving various therapies. Earlier this month her insurance ran out, and suddenly — without notice — now she receives none.

This situation is not surprising, given the claptrap patchwork of healthcare payment that passes for a system in our country. The health-care payment reform debate has been so politicized — that is, it has become a tool of political power that each party wields as a weapon against its opponent — that rational, ethical discourse on the subject seems to have been left in the dust. There is a more ethical way to deliver health care; however, as long as we leave it up to lobbyists, interest groups, and two political parties that seem more intent on power than government, we will see increasing numbers of people left in the medical and political dust.

Human dignity – By some standards, my sister might be thought of as having lost her human dignity. Before June 11th she was an energetic, triathlon-running, blog-posting woman; now we are excited if she can manage a hand-squeeze or a groan. By some estimations, she might be said to have a “life not worth living.” According to some bioethicists, she doesn’t have what it takes to be treated with the respect due to human persons. I’m sure glad they haven’t been taking care of her these last five months.

The search for a cure – Putting aside for the purpose of argument all of the insurmountable hurdles that have to be overcome, imagine for a moment that the fondest dreams of certain researchers reach fruition, and that embryonic stem-cell therapy for brain trauma becomes a reality. Imagine (you have to imagine, because it is all imaginary at this time, never mind the rhetoric to the contrary): What if my sister could walk and talk and laugh again, if only we were willing to sacrifice an embryo, “a glob of cells smaller than the period at the end of a sentence,” maybe an embryo leftover from IVF in fertility-clinic-freezer limbo somewhere?

Much of the Church has taken a stand against embryonic stem-cell research, as is right. But it’s easy to oppose something that has no forseeable hope of becoming reality. What would happen if the unthinkable became possible? Would the Church still stand against it? If cures for your daughter’s diabetes, your son’s leukemia, your wife’s brain tumor, your mother’s Alzheimer’s, were an embryo away? Would we be like the liberal bioethicists and find justifications for what we now rightly oppose? Or would we continue to respect all humans, no matter what size or developmental stage, even to our own hurt?

The procurement of organs for transplantation: China vs. the WMA

Can a convict sentenced to death give truly free and informed consent to the harvesting of his or her organs after execution?

There is great difficulty obtaining organs for transplant in China. Much of this is blamed on cultural factors, although suspicion of corruption in the medical profession is also a significant reason. Whatever the reasons, between 2003 and 2009 there were only 130 voluntary organ donations in all of China. Yet in 2006, there were 11,000 organ transplants performed.

So where are all of these organs that are not voluntary donations coming from? Answer: executed prisoners. To its credit, China does try to make sure that prisoners give informed consent. According to Bing-Yo Shi MD and Li-Ping Chen PhD, writing in Wednesday’s JAMA, “If a sentenced convict [in China] would like to donate his organs, the convict and his family must submit an official application and sign an informed consent statement with a lawyer present. Before execution, the convict is asked to confirm his organ donation again, and if consent is reneged, organ procurement is explicitly prohibited.”

However, the World Medical Association (WMA) in its Statement on Human Organ Donation and Transplantation explicitly states that “Because prisoners and other individuals in custody are not in a position to give consent freely and can be subject to coercion, their organs must not be used for transplantation except for members of their immediate family.” (Section F par. 4) In a 2005 resolution the WMA addressed China specifically, stating unequivocally that “The WMA demands that China immediately cease the practice of using prisoners as organ donors.”

In a society such as China’s with such strong biases against organ donation, what are we to make of this large number of sentenced convicts apparently consenting to donation? Are they simply the most altruistic segment of the Chinese population? In the absence of another explanation, one must wonder whether the fact of imminent execution itself is somehow a form of coercion, an external constraint on behavior. In the absence of another explanation, one must wonder whether China or the WMA is right:

Can a convict sentenced to death give truly free and informed consent to the harvesting of his or her organs after execution?

 

(Information for this post came from the letters, “Organ Transplantation and Regulation in China,” and its reply, published on pages 1863-4 of the November 2nd issue of JAMA: The Journal of the American Medical Association, which were in response to the article “Regulation of Organ Transplantation in China: Difficult Exploration and Slow Advance,” by Shi and Chen, published on pages 434-5 of the July 27th issue.)

The ethics of PSA testing

 

The humble little PSA test has become a hot-button ethical issue.

The PSA (prostate-specific antigen) test is a blood test that can detect prostate cancer at an earlier stage than can physical exam. It is not a perfect test; it misses about 25% of cancers. But it is the best thing we have for detecting prostate cancer early.

The United States Preventive Services Task Force (USPSTF) reviews all of the available evidence regarding screening tests for various conditions, and makes recommendations based on the scientific evidence. Earlier this month, the USPSTF posted a draft of its update to its 2008 prostate cancer screening guidelines. The earlier guidelines had recommended that men over 75 not be screened with a PSA test, and said that there wasn’t enough evidence to make a recommendation one way or the other for younger men. The proposed new guidelines, based on more recent studies, go further, giving screening a “D” recommendation, which means that there is moderate or high certainty that the service has no net benefit, or that the harms outweigh the benefits, and the task force discourages use of the service.

But how can a PSA cause harm? It’s just a poke in the arm, right?

It is not the test itself that causes harm, but what we do with it. 90% of men with PSA-detected prostate cancer undergo radiation and/or surgical treatments that have considerable risks and side effects. The chair of the USPSTF said that for every 1,000 men treated for prostate cancer, five die of perioperative complications; 10-70 suffer significant complications but survive; and 200-300 suffer long-term problems, including urinary incontinence, impotence or both.

These numbers might be acceptable if there were evidence that treating early prostate cancer did some good. But, counterintuitive as it may seem, studies have shown little if any positive benefit from treating prostate cancer early. When men diagnosed and treated by PSA screening are compared with those who are not treated, there is virtually no reduction in prostate cancer mortality at 10 years.

J. A. Muir Gray wrote, “All screening programmes do harm; some do good as well.”

For a profession that takes seriously Primum non nocere, “FIrst, do no harm,” it seems, with what we know at the present time, that this particular screening test may contravene our first ethical principle.

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

Ethical Blind Spots

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.

Caring too much?

 

Is it possible to have too much care?

Apparently, a lot of primary care docs in this country think so. In a study published in Monday’s Archives of Internal Medicine, 42% of primary care doctors surveyed said that their patients were receiving too much medical care, and 28% said “they themselves were practicing more aggressively (ie, ordering more tests and referrals) than they would ideally like to be.”

But is it really possible to have too much care?

Well, it depends on how we define our terms.

If by care we mean what we usually mean by the word — sitting with someone, showing concern and empathy, listening, attending to their needs — then no, I don’t think we can have too much care.

But if we replace this humanistic definition of care with a technical definition of care, as in, “I show care by ordering something for this patient, whether it’s a test, a procedure, a pill,” then yes, we can have too much care.

Because every pill or procedure has side effects; every test carries its inherent risks. And all of these interventions cost money, and add cost to a system in which the medical costs are skyrocketing at unsustainable levels.

Interestingly, the doctors in the study gave “Inadequate time to spend with patients” as one of the top three reasons they provide too much technological care. The humanistic type of care requires time. In a system that pushes doctors to do more and more, there is less and less time to care for patients. So the time taken to provide humanistic care is replaced by techno-care: tests, studies, etc.

There are many patients who are truly underserved, who get neither enough humanistic care — time with a doctor who knows them — nor enough technological care — that is, appropriate tests and interventions. But we will never have the wherewithal to serve these patients unless we stop pouring money into inappropriate technological “care” that serves as a poor substitute for the humanistic care we can’t seem to take the time to provide.

An e-mail went around our office asking the docs what were the top three things patients came to see them for. One experienced doctor wrote, “I decided the top three are love, attention, and sympathy.”

Those things, the essence of real care, require real time. How do we change a system so that it stops encouraging the provision of expensive technological care as a replacement for time-consuming humanistic care?

As a society we need to find an answer, or we will not be able to afford either one.


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.”