Corruption and the powerless

Last week I participated in a discussion of global corruption. Roberto Laver, an international lawyer who has served as senior counsel for the World Bank, was addressing a group of Christian leaders from around the world at Taylor University. He was talking about the problem of corruption, particularly in the public sector, and the problem that it presents in developing countries. The problem has been widely recognized in the economic development community, but the anti-corruption reforms that have been undertaken have had limited impact. Laver was discussing research the he is beginning in conjunction with Taylor to look at how people’s faith impacts how they view corruption in their community.

As we talked about the negative impact of public corruption and how the church can help make a difference in an area that God has expressed deep concern about (see Isaiah 1:23 and Amos 5:12), I thought about how corruption impacts the field of medicine. Several examples have been mentioned recently on this blog. Joe Gibes recently wrote about how the failure to publish drug trials that showed no evidence of effectiveness of a medicine could lead to overuse of the medicine to the benefit of the company making the drug who chose not to publish the research results. Christian Verder wrote about the problems related to cosmetic surgeons marketing unproven stem cell therapy to the public. It can also involve physicians allowing their judgment to be subconsciously biased by someone who brings in lunch for their office staff.

It is interesting to think about who the victims of public corruption are. When prophets such as Isaiah and Amos condemned Israel’s problems with leaders taking bribes they connected it with lack of justice for the poor and powerless. Those unable to afford the bribes do not get what they deserve. In much of the public corruption in developing countries it is again the poor and powerless who suffer as the money intended to improve their lot goes to those in power. In medicine it is the patients who lose. To provide the best treatment for those we care for research needs to be done and reported honestly, treatments should only be recommended when they have been adequately evaluated, and those making decisions about their patients’ care need to be unbiased in deciding how they should be treated. In the middle of our complex health care enterprise it is those who are being cared for who tend to be powerless. God expressed very strongly through his prophets that he cared about the powerless. One of the most effective ways for us to reflect a godly perspective of what medicine can be is to remember to put first the needs of those whom we serve, who are frequently the powerless ones God has called us to care for.

The Chasm Between Caring and Curing

Lately, there have been a bevy of articles steeped in irony, addressing the health hazards of health care to one’s health and well-being. Two articles by Roni Caryn Rabin in the April 29th, 2013 edition of the Washington Post (“Hospitalized Patients Too Often Have No Single Physician in Charge of Their Care;” and “Hospitalized Patients Need an Advocate by their Side to Avoid Medical Errors”) highlighted such concerns. While it is easy to categorize such anecdotal journalistic complaints as, well, journalistic rhetoric, the picture painted deserves attention for what it reveals about how care is perceived by those on the receiving end and the impact it is having on the physician-patient relationship.
The picture? A sick and vulnerable patient; a fragmented,uncoordinated system; dozens of faces flitting in and out of the room; inconsistent information; conflicting management plans; lack of communication; and all of this compounded by failure of the patient to improve, or worse yet, to further deteriorate. No one is seemingly in control; no one seemingly “cares.” It is an apt illustration of the old cliché, “too many cooks spoil the broth.” Even the hospitalist quoted in the article confirmed (confessed?) that he only spends minutes in the (patient’s) room. His job, as he perceives it, is bridging the gap between the plethora of specialists and the patient. But by Rabin’s account, it is largely unsuccessful.
Rabin’s solution to this malady? A patient advocate; a friend or family member who remains at the bedside to ensure proper care and intercept errors, one who comes supplied with note pad, pens, and all relevant health, medical and insurance information, as well as antibacterial wipes to clean the surfaces of the entire room. Anyone with a vested interest in the profession cannot help but be saddened by the elements of truth that reside in this rendition. For what the article illustrates is not just loss of communication, command, and integrity, but loss of care—and with that loss of care, loss of trust, the interpersonal trust that is the foundation of the fiduciary physician-patient relationship.

An article in the April 11, 2013 edition of NEJM by Dr. Arthur Kleinman, provides the conceptual tools needed to diagnose the malady in Rabin’s anecdotes. In the article, Dr. Arthur Kleinman uses the personal experience of being a caregiver for his cognitively impaired wife to narrate the distinction between illness (the experience of the patient) and disease (as diagnosed, treated, and understood by the physician). Indeed, this is the unnamed chasm between provider and patient that has not been bridged in Rabin’s anecdotes, because it has been ignored by means of reductive objectification. The patient’s illness has been reduced to biological disease process that can be objectified and quantified. It is this personal context and experience of the disease process that has been forgotten in our technological pursuit of the objective cure.
Medical care as a moral encounter involves  a healing touch (both literal and figurative—we” touch” the lives of others by our care andconcern) and a healing presence . Indeed, much unquantifiable healing occurs in the personal encounter between physician and patient, in the moments of touching, valuing, and being present to the suffering patient. But it is healing that does not fit into the current commodified paradigm of medical “care,” with its “outcomes analysis” and calculations of productivity. There is no place in EHR diagnostic templates for such subjective factors as the personal experience of disease; for challenges of life with the disorder, or for the effect of those challenges on the disease itself.

It has been said that the “eyes are the window to the soul;” but there is little opportunity in the current system to gaze into the life and soul of the ill, for EHR is a jealous lover–the computer screen demanding all of one’s attention, and preventing the eye contact necessary for establishing personal relationship.
We are complex, integrated, bio-psycho-social beings who live in a tightly integrated world where an impact or change in one area has powerful effects in all others. To truly care we must return to a more holistic, less fragmented and reductionistic paradigm of medical care. The “medical home” focused as it is on data gathering for population health is not the answer. We must not let the care for the ill be swallowed up by the pursuit of the cure of the disease.

What Should We Want?

At a biotech industry conference last week, I sat in on a panel discussion entitled “The Affordable Care Act is Here to Stay.”  The upshot:  black crepe all around—biotech-driven research and development of new drugs is going to get squeezed.  And so, it seems, it clearly will be.  And a panelist representing patient advocacy organizations said, “What do patients want?  We want access to all new drugs, we want the drugs to be ever better, and we don’t want to pay for them.”

Okay.

I’ll limit my comments here to oncology, because it’s the area I know best.  There appears to be an emerging sentiment among cancer clinical researchers that a tactical reassessment of the 40+-year-old “War on Cancer” is in order.  To wit:  the story thus far has been to throw money at the problem, rush every possible development forward, and try to piece together every incremental development, no matter how small, to make gradual progress.  (And to hold no end of events “for the cure” in the process.)  And, indeed, this is how progress in cancer treatment has been made; some thunderbolts of discovery have struck, but progress just as often has been slow, and truly apparent only over a number of years, even decades.

Now, however, because the new consensus is that doctors should be paid by the patient instead of by the test, procedure, or encounter; because it’s clear that payment arrangements that reward more and more treatment create incentives for physicians that are questionable at best and frankly unethical at worst; and because the public, through government or through private insurance (and what can be gargantuan out-of-pocket payments), is increasingly unwilling or unable to pay for certain expensive new drugs—for all those reasons, cancer doctors are thinking that good medicine, human decency, and common sense demand more effectiveness from every new drug, and they’re trying to define what they mean by that.  “How high should we set the bar?”

To that end, the American Society of Clinical Oncology (ASCO) has put out for public comment a draft proposal defining “clinically meaningful outcomes.”  I wish I would have been watching this more closely; the deadline for public comment is tomorrow, May 1.  But that notwithstanding, and even if you are not a doctor, I encourage you to look at and see what you think.  Note that however the recommendations come out, what is “clinically meaningful” will be defined by “evidence;” i.e., data from controlled clinical trials, not what worked for Aunt Agnes.  And the recommendations will be an example of doctors raising an authoritative voice on behalf of their patients—what they think they ought to insist a drug do to warrant putting their patients through the risk and trouble of getting them.  As a matter of process, both points are as they should be, I think.

And what should we, the public, consider “clinically meaningful?”  Well, that’s what ASCO is inviting comment on.  The doctors’ voice is authoritative but not dictatorial.   And how should we comment?  From a perspective that realizes that this life is not all that there is, that realizes that death is a conquered enemy, and that understands that human dignity may be challenged by, but is not obliterated by, terminal illness.  And, above all, we in the church should remember that bringing the gospel of eternal life to all is our most urgent task.

Drawing the line between coercion and persuasion

Is it ever right for a doctor to try to persuade a patient to choose one course of action over another? Some would argue that this is an example of blatant paternalism, even coercion, unethical because it violates a patient’s autonomy. To such people, the doctor’s job is to present unvarnished, unbiased facts: just present the options and let the patients choose. (I would argue that such a position is a repudiation of the whole idea of medicine as a profession, that autonomy viewed in such a fashion makes the doctor not a professional but a shopkeeper, just presenting his wares to whoever will buy. The ethical imperative that is an essential component of a profession is obliterated by such a view of autonomy. But that’s a subject for another post.)

The April 24th JAMA carries a potentially provocative Viewpoint entitled “Evidence-Based Persuasion: An Ethical Imperative” (you can view the abstract and a little over half the article here). The authors classify persuasion under three headings. The first is removal of bias, the correcting of mistaken beliefs or cognitive biases, such as the mistaken belief that the MMR vaccination causes autism; the authors see this as mandatory. The second is recommending options, that is, assessing patients’ values and counseling them regarding which treatment option is most in line with their values; the authors see this as “usually permissible but sometimes inappropriate.” The third is creating new biases, the creating of new mistaken beliefs or cognitive biases in order to persuade a patient to follow a recommended course of action; the authors see this as “normally impermissible but sometimes acceptable in rare cases.” The authors conclude with a discussion of the importance of context, and the statement that “persuasion is an essential component of modern medical practice, and it may be impossible to respect patients’ autonomy without engaging in persuasion.” (!!)

The removal of bias is perhaps the most problematic, because sometimes (often) we find out in medicine that what we thought we knew, was wrong (The short history of medicine: “Ignorance replaced with fallacy”). But I think the authors strike a good balance between ethical and unethical persuasion. The physician-patient relationship is inherently asymmetrical; the patient is exposed (metaphorically and/or literally) and vulnerable, and the physician has great power over the patient by virtue of the trust the patient places in her, power that potentially could be misused for coercion. Absolute dictums regarding where to place the boundary between autonomy-respecting persuasion and outright coercion are impossible; every person, every relationship is too different and complex to make blanket statements that apply to every situation. But the currently accepted absolute dictum that sees the doctor as shopkeeper and the patient as consumer is as destructive to the patient-physician relationship as the coercion it attempts to eschew; and while it may be easier to take a universal, “just-let-the-patient-decide” approach than to make nuanced, thoughtful, difficult, shared, context-driven decisions, it is also contrary to the fundamental nature of medicine as a helping profession.

A funny thing happened on the way to the ICU . . .

In the latter half of the last century, medical technology made huge leaps in the ability to sustain biological function. Suddenly we could replace lost kidney function and keep lungs breathing and hearts pumping for people who, but a short time before, would inevitably have died from their kidney, lung, or heart failure.

But something funny happened on the way to the ICU. These new technical means of medicine radically changed the calculus of the goals or ends of medicine. Our technical advances far outpaced our ability to think ethically about how to use our newfound abilities.

The new technological means allow us to keep bodily functions going when they would otherwise stop. For many patients, these are lifesaving and appropriate interventions. However, for others, these new treatments become treatments that treat — nothing. To put it another way, when there is some radical insult to a person’s body, the technical means to sustain vital functions such as breathing and circulation are an appropriate intervention that buys time for the body to heal in ways it obviously couldn’t if those vital function weren’t sustained, i.e., a body can’t heal if it’s dead. But there are some patients for whom death is imminent, inevitable, and no degree of healing is possible outside of a miracle. For these people, the technical means become an end in and of themselves. We sustain a person’s bodily functions, not as a means to allow any hoped-for healing to take place, but because we are able to. We may not even ask why we do it; we do it because we can. Sometimes we even think that if we can do it, we must. Thus a technical means becomes an end in and of itself.

This is one of the inevitable tendencies of technique (of which technology is a subset): the tendency to turn means into ends. If we can ethically control the expansion and use of techniques, then they can be our servants: powerful ones that we must keep a close eye upon, yet servants nonetheless. But we humans have a tendency to place faith in technology, to assume its goodness, and so to catalyze its tendency towards self-justifying expansion. To the degree that we allow this to happen, we end up serving our technology, rather than technology serving us. We end up doing things because we can: keeping the ventilator on because — well, because the patient’s on a ventilator; doing the scan or the blood test because, well, we have a patient here, and we have to do something, and we can, even if it doesn’t really serve the end of improving or preserving the health of the patient.

Of course, it is not only in the ICU that this automatic deferral to technology can occur, but in all areas of medical practice. In light of this apparent deficit of ethical reflection on and regulation of our technology, in light of the exchange of our control over technique for technique’s apparently autonomous self-propagation, I wonder whether the practitioners of the medical art are not in danger of transforming from professionals to technicians.

Toward Reasserting the Ends of Medicine: More historical considerations, including costs and caring for populations

In a previous post, I wrote of how the ends of medicine expanded from “Helping the sick,” to “Caring for the sick, preventing disease, and promoting health.” In this post I write about a further apparent expansion of the ends of medicine.

One hundred years ago, medical treatment was such that the patient was possibly better off if she could not afford the doctor than if she could. However, about 1930, this changed, in large part due to the technological changes that have increased medicine’s power to treat disease. These same changes drove the price of medical care out of the range of the average non-millionaire. Larger entities became necessary to absorb the costs of health care; those entities were either private groups of insured people, or, where health care was nationalized, a nation’s entire population.

From time immemorial, the basic economy of medicine has been one person coming to another, telling his story, and the other person using her skill to help change that story or make it one he can live with. The focus was on the individual. However, with the economies of scale brought about by large groups of people paying into an insurance pool, whether voluntarily or through taxes, the concept of the doctor being responsible for the health of a population has gained traction. This concept has been strengthened in the last twenty years by the “Evidence-based medicine” movement, which is all about deriving practice guidelines from population data. Thus, as a practicing physician, I find that the quality of care I provide is judged not by how I treat individual patients, but by “scorecards” of population measures: how many of my patients were treated according to the guidelines, what percentage of the patients in my panel had a certain test or procedure, what percentage went to the emergency room, etc.

What does this all have to do with the ends of medicine? First, it seems that the ends have implicitly become, “Caring for the sick, preventing disease, and promoting the health of a population.” Yet the basic economy of medicine still revolves around that individual telling a story. It may not seem intuitive, but doing what is best for the patient in front of me may not always entail doing what is best for the health of a population. How does one ethically reconcile caring for the individual with caring for a population? Is the health status of a population a correct measure of whether medicine is achieving its ends?

Second, since health care is a (qualified) “good,” that is, data now point to decidedly worse health outcomes for those who cannot afford to see a physician, whose responsibility is it to provide access to that good for those who cannot afford its dizzying cost scales? If the success of medicine in reaching its ends is to be measured by the health of a population, who makes sure that all members of that population have access to health care?

Tune in next time . . .

 

 

Speaking of enhancement and stem cells . . .

A recent article in the New York Times brings into focus what happens when cosmetic surgeons market “stem cell therapy” directly to consumers. In addition to capitalizing on our fears of looking our age they are grossly overstating claims regarding the effects of stem cells. What is even more disheartening about this behavior is that plastic surgeons have actually led the way in the basic science surrounding adipose-derived stem cells. I have several friends and colleagues engaged in this research and indeed there seems to be something salubrious occurring in areas where adipose-derived stem cells are transferred as a part of fat grafting.

In the field of plastic surgery we see what Steve Phillips mentions in his blog run amok. Plastic surgeons function along a continuum between cosmetic surgery and reconstructive surgery: cosmetic surgery’s goal is to improve upon normal, and reconstructive surgery’s goal is to restore what is abnormal back to normal. There are two Latin phrases that govern those different aims: caveat emptor and primum non nocere. What happens is that the cosmetic surgeon accepts the caveat emptor of the marketplace and usurps the techniques and nascent discoveries being cautiously advanced by the surgeon-scientists. With our society’s preoccupation with enhancement there is a huge demand to bring these unproven treatment modalities “to the street.”  For those of us trying to do no harm as we wait for the appropriate data on adipose-derived stem cells it can be frustrating.

 

The other ethical problem with stem cells

I have written about this before, but that fact that it just keeps coming up seems to warrant another go. For years much of the ethical debate about stem cells has centered on the use of embryonic stem cells in research and focuses on the moral status of human embryos and the problem of destroying human embryos for research. That is still a significant moral issue, but there is another moral issue regarding the use of stem cells that has nothing to do with embryos. The issue is the use of totally unproven treatments outside of clinical research studies.

A recent article in The Scientist reminds us that this continues to be a major ethical issue. Italy’s outgoing health minister is reported to have given authorization for the use of patient derived stem cells under a compassionate use program to some terminally ill patients against the recommendation of the country’s health regulatory agency. This is being done even though there is no evidence that there is any benefit from the administering the stem cells produced by the organization involved and no studies have been published regarding the involved treatment. Why would the Italian government choose to pay for a treatment that there is no reason to believe is beneficial in a way that nothing will be learned by doing it?

I think it has to do with some things that have become a part of the way that people in our time think about illness and medical treatment. A great many things have been accomplished by medical science just in the time that I can remember, and even more in my parent’s lifetime. We can cure many diseases that were incurable in the past. There was a time when life was expected to be short and hard and death was very present to everyone. Many of the achievements of medical science are wonderful, but they have given rise to the expectation that we should be able to cure all diseases and that we somehow have a right to be cured. Instead of realizing that we are all mortal and we will all die, we begin to think that it is unfair when we are ill and unthinkable to have an incurable illness. That makes us vulnerable to someone selling unproven treatments that benefit only the seller even to the point that we pressure our governments to pay for this type of unproven treatment.

We need to remember that the common fate of all human beings is death, and all of medical science is unable to change that. Every person whose life is saved by a new amazing treatment still eventually dies. We should not be blind to the reality of death. The response to incurable illness needs to be compassionate care for the life that those who are dying have left, not the false hope of unproven cures that accomplish nothing.

Toward Reasserting the Ends of Medicine: A tentative beginning, with some historical considerations

Recent posts (Here and here) on this blog referred to the “ends” of medicine, and last week Dr. Holmlund challenged us to explore more systematically just what those ends are. As I have considered that challenge, I have been stymied by the herculean magnitude and complexity of the task, especially given my limited knowledge of, and reading in, the relevant philosophical, theological, sociological, and historical disciplines. However, having been a practicing physician for about twenty years, I will tentatively start on the project, based more on my experience than on any great learning or reading; I hope that those who have the advantage of the learning and reading will make up for and (gently) correct my deficiencies.

One of the hurdles to overcome in defining the ends of medicine is that there are many views held by different groups of people, and they have changed over time. So the question becomes more focussed: What are the proper or correct ends of medicine? Is this something we can discover, or must we merely define it? If so, on what basis? Also, what do we mean by medicine? Are we talking just about the actions of physicians? Or does it include the actions of, say, hospital boards? Biomedical researchers? Public health departments? Medicare utilization reviewers?

My impression of the history of this subject is that the ends of medicine were originally narrowly defined in regard to physicians, and their goal was to help the sick. The Oath of Hippocrates, from around the 5th century BC, speaks of dealing with “the sick” and “sufferers.” There seems to be no reference to preventive medicine or promoting health. This view of medicine’s ends was taken up by the Christian medical tradition: “Care of the sick, grounded in the compassionate sharing of the sufferer’s pain and seeking ways of alleviating and perhaps curing it, is a witness to God’s work of redemption in Jesus Christ.”*

As modern science developed, its founding fathers such as Francis Bacon and René Descartes thought that by gaining power over nature, people could go beyond treating disease to preventing disease and preserving health. Measures to prevent disease were of course known from antiquity, as the health regulations in the Pentateuch demonstrate; and magic charms to ward off disease have probably always been widespread. But somewhere along the way, this idea of not just treating disease but preventing it, and in so doing promoting health, was taken from the priest’s job description and inserted into the physician’s. Thus, the physician’s ends expand to become, “Caring for the sick, preventing disease, and promoting health.” A Tall Order indeed. And one that adds umpteen layers of ethical considerations, such as, What does it mean to “Do no harm”? What is “health”? And many others that I can’t begin to mention in a 500-word post. But in future posts I will attempt to chart a course through this maze , and with Jon Holmlund I invite fellow bloggers and commenters to help us along the way.

 

*Robert Song, Human Genetics, 13.

Toward Reasserting the Ends of Medicine

Recent posts by Drs. Gibes and Haack state that a recapturing of the ends of medicine—what medicine is about—is urgent, and any reassertion of those ends should be led by physicians.  I agree (even if some of our exchanges expose areas of disagreement, particularly about specifics of public policy).  When we say that the ends of medicine must be reclaimed, what do we mean?

This question prompts me to ask about a philosophy of medicine.  Dr. Pellegrino articulated the fullest such philosophy I’m aware of: medicine is a true calling, a profession, not a job or a business; it is characterized by a covenantal relationship between physician and patient; duty requires the physician, from time to time, to efface his self-interest in favor of the patient’s interest; and so on.  (I do not hope to write an adequate summary of Dr. Pellegrino’s philosophy here, I simply mean to remind us that he has spent a lifetime developing it.)  I also recall, again, the characterization I heard from Dr. Samuel Thier, years ago, of members of a “learned profession”: they are committed to lifelong learning, they police one another, and they value performance over reward.

It seems to me that everyone whose name is followed by the letters M and D (present writer included) must come to terms with these viewpoints, regardless of where he is stationed within the sprawling enterprise we call modern medicine.    It also seems to me that the sprawl invokes a thicket of often-competing duties that can complicate efforts to step back and unpack the proper ends of medicine.   It further seems to me that the task of restating the ends of medicine might be simplified by starting with the perspective of the individual practitioner—a perspective that I invite my fellow bloggers, who take care of patients (I don’t, any more) to take the lead on.

How might this project proceed?  I take the perspectives of Drs. Pellegrino and Thier to be axiomatic.  I also take as axiomatic a commitment to the life and dignity of each individual patient, a commitment to human exceptionalism, and a commitment to defend what bioethicists call “the therapeutic boundary.” That said, I suggest that a renewed discussion of the ends of medicine might break out such specific questions as:

1)      As Dr. Haack seems to be asking, what is the scope of medical care that mercy requires we advocate be offered, at equal practical opportunity, to all humans?

2)      If choices must be made among the items included in 1), which of their costs ought to be socialized (through public or private means)?  Or, conversely, are there any medical costs that ought not be socialized?  In other words, what should the physician demand his healthy neighbor pay for, on behalf of his patient, and what are the limits of that authority?

3)      If “good medicine” is, as seems self-evident, an “end” of medicine, how much does good medicine require or permit an individual physician’s judgment as opposed to following treatment guidelines that are at least claimed to be “evidence based,” or to managing for disease outcomes?  How do we approach—and who interprets—“the data?”  (Last week, Dr. Gibes provided a link to the excellent collection, found at the ABIM’s “choosing wisely” website, of lists of questionable procedures.  Each list that I reviewed was followed by a disclaimer—“see your doctor”—yet the evidence is believed definitive for these cases!)

4)      What is the physician’s relative duty to her individual patient as opposed to the public health, or more elusively, the public good?  A case study in last year’s Hastings Center Report posed the case of a 56 year-old woman with treatable soft-tissue sarcoma who visits her physician carrying a supply of an effective medicine that is in such short supply that public policy calls for it to be used primarily for pediatric cases.  Is the physician obligated to administer the drug to the woman, the case asked?  Incredibly [to me], the [eminent] discussants said, “no.”  Correct?

5)      What constitutes an ethical practice arrangement in the 21st century?  To be sure, obvious profiteering or conflicts of interest are out of bounds, and arrangements that create the potential for conflicts of interest (such as certain ways some specialists are paid) should be re-arranged.  But are certain kinds of physician group structures ethically preferable, and if so, what is the proper role of people skilled at managing money or organizations?  And is it ethically substandard for a physician to be an employee of, say, a hospital system?  And how can a physician-employee make sure he is advocating for his patient?

I hope that my fellow bloggers will take up these or other relevant issues further, systematically, brick by brick.