Racial inequalities in cancer survival

Three studies published in a supplemental issue of the journal Cancer this month come to disturbing conclusions: in the United States, the survival rates for colon, breast, and ovarian cancer are lower for black people than for white people.

The news isn’t all bad: overall cancer survival rates are going up. The three studies mentioned here draw from two larger studies of worldwide cancer survival, the CONCORD study, published in 2008, and the CONCORD-2 study, published in 2015. Between CONCORD and CONCORD-2, cancer survival increased across all groups. But in both studies, the survival of black people in the United States lagged behind that for white people by about 10%.

Now there are certainly many reasons for the difference. Black people may be getting diagnosed with cancer at later stages, when survival is lower. There may be differences between the two groups, like genetic factors or the presence of other illnesses, that cause the cancers to be more aggressive in blacks. Mistrust of the health care system is more common among black patients, so they may be less likely to access care or access it early enough.

But other reasons include socio-economic status and access to health care; those who can’t access medical care because they can’t afford it or because it is not available nearby are less likely to receive necessary screening and treatment. And most troubling is the “consistent finding that black women do not receive guidelines-based treatment compared with white women, even when treated within the same hospital.”

The situation is too complex for simplistic answers; one can’t say from these studies that doctors are individually practicing blatant racism, and there is after all such a thing as systemic racism. But the medical profession should take such findings seriously, and seek every available avenue of education and self-monitoring to ensure that of all the places people encounter racism, the health care system is not one of them. And Christians especially, who believe that God created all people with equal dignity because all of us are created in His image, should work towards a health care system where the value — or length — of one’s life does not vary based solely on the color of one’s skin.

Party politics, people’s lives

As health care financing rises yet again to the top of our national legislative agenda, some fundamental questions ought to be strongly considered. First, and most fundamental: Is some level of healthcare a right, that the government is therefore obligated to protect? Is it better viewed as a common good, like roads and fire protection services, that everybody pays for through taxes and everybody benefits from? Should it be treated as a luxury item, like large-screen TVs and designer clothing, that only those who can afford it get to enjoy?

Other important questions: What are the strengths and weaknesses of the current system of financing health care? Who does it benefit? Who does it harm? What will be the effects on patients, intended and unintended, of changing the current system? Who will benefit, and who will be harmed by those changes? What will be the effects on physicians and health insurance companies? How will any changes affect the patient-physician relationship, for good or for ill?

Is the free market the best way to finance health care? Or is it best publicly financed? Or some mixture of both? Why?

A most important question is, How does the system treat the most disadvantaged, the poorest, the most helpless or down on their luck, and the ones who need it the most? How should it treat them?

What should the ideal health care system for patients look like? Can we start moving towards that ideal? How?

Other fundamental questions will no doubt present themselves to the reader. However, instead of questions like the ones above, it seems that the following questions are being debated instead: Which party and which president designed the system we have now? If it’s not my party, how can we get rid of the current system (and who cares if we have nothing to put in its place, let’s repeal it anyway)? How can we protect our party (whichever one it happens to be) from the political fallout that will occur as changes are made? What does the ideal health care system for my party look like?

I have many patients who have benefited from the most recent changes to the system. I have others who are starting to feel the downside of those changes. For patients, it is not primarily about parties or presidents, but about their health, their lives, and whether they are treated with dignity by the health care system. Health care financing will always be expensive, and therefore contentious. But our contentions should be based primarily on concern for patients. Recent legislative discord on the subject seems to stem not from concerns about what is best for patients, but what is best for political party power.

Another election, another round of health care reform

Now that we Chicagolanders don’t have the World Series to distract us anymore, we have to go back to thinking about the upcoming election. Health care financing is of course one important issue in the presidential race. One side wants to repeal and replace the Affordable Care Act (aka Obamacare), the other wants to keep it and work to fix it. Whoever wins, it’s evident that changes are coming.

Archie Cochrane wrote a book in 1972 called Effectiveness and Efficiency: Random reflections on health services. The book was commissioned to evaluate the National Health Service (NHS) in the UK. An article about this book was published in the journal Medical Humanities last month, and a sentence from the article caught my eye:

Cochrane describes three different kinds of output from the NHS: ‘freedom from worry about the cost of medical treatment and care,’ ‘increased equality [of health care] between social classes and between different parts of the country’ and ‘improved care for those who cannot look after themselves.’

I don’t anticipate that we’ll be setting up a system anything like the NHS anytime soon. But as changes are made to the way health care is financed in this country, these three “outputs” or principles of Archie Cochrane’s would be a good start for sound and moral targets to aim for. There are still many, many people in this country who avoid getting necessary health care or taking their medications because of worry about the cost; there are large inequalities in health care between those of different socio-economic groups; and many of those who can’t look after themselves are discharged from hospitals to live on the street every day. However we decide to finance health care in this country, definitively addressing the plight of these groups is a moral obligation, and seems far more ethically compelling than protecting the interests of large companies or political parties.

The Lost Narrative

In their article “Autonomy vs. Selflessness at the End of Life” published in the Summer 2015 edition of Ethics & Medicine, Hannah Martin and Daryl Sas provide a useful foray into the battle over the meaning of human dignity.

The authors describe an alternative to the “flat” version of human dignity espoused by proponents of physician-assisted suicide (PAS)—a version based solely on self-determination. In other words, a human dignity reliant only on autonomy (or, control) in decision-making lacks the depth and breadth inherent in the actual human experience. Our own individual creation ought to be sufficient to convince anyone of our lack of control over the nature of life, and brief reflection on the sheer improbability that there is any life at all should be enough to cause one to ask if there is some other force behind it.

I would add that the concept is not just flat but paper-thin, and bases its appeal on what could be called “the lost narrative.” Martin and Sas refer to the “poignant narratives of dying” that drive state laws legalizing physician-assisted suicide. These narratives succeed when we fail to articulate an alternate, and in fact, accurate view of the human experience of dying.

The authors help greatly to provide the alternative, a view in which dignity is based on virtues such as love (and its selflessness), courage, humility, and blessings such as God’s grace. Without these, autonomy will push us towards the extremes of “absolutizing life’s sanctity by claiming autonomy in life and…absolutizing life’s dignity by grasping at autonomy in death.” In fact, without God, mankind could never find balance, but instead be driven (as we seem to be) toward the extremes.

And without proper balance, where would someone establish the threshold of sufficient suffering to warrant early death? And if selflessness is removed as motive, what horrors might the medical profession produce? The “suffering” of family members and medical staff would enter into the equation (unchecked by selfless love) and push the patient toward an earlier and earlier death.

For the proponents of PAS, suffering is only bad. Human dignity becomes simply avoidance of what we can’t control. Such a view robs mankind of any hope that anyone can be anything more than the person who flips his own switch. But for those of us who have been in the presence of dying, we have had the opportunity to see for ourselves what is and is not dignified. We see it in the selfless love of caregivers, of family, and of the dying, all cherishing those final moments, wishing there were more to spend together, and never ready to end it all too soon.

The Physician’s Imprimatur

In a previous blog response about physician-assisted suicide (PAS), Mark McQuain asked, “Why involve physicians at all?” That question gets too little attention.

There are some easily discernible (and perhaps expressed) reasons why physicians are chosen to be the agents of assisting suicide. First, they have access to pain- or consciousness-relieving pharmacologic measures that also have the (in this case) desirable effect of stopping breathing when given in high enough doses. Second, by their professional ethic, physicians should approach patients with compassion, which, as mentioned previously, is the catchword that is quite deliberately attached to the act of assisting suicide by those who promote it.

But as Dr. McQuain suggests, access to painless methods for killing need not be restricted by to physicians, just as compassion is not; there is no law of physics that prevents others from assuming this role. To limit the methods and the responsibility to physicians is a willful act by society.

This leaves one main reason for committing the responsibility of assisting suicide to physicians: involvement of physicians gives it a much-desired moral certification, or imprimatur. Here is the logic, unspoken as it is:

  • Physicians have moral standing;
  • If physicians are involved,
  • Then the act has moral basis

But this gets it backwards. Physicians have moral standing based on what they do and what they refrain from doing. Edmund Pellegrino wrote often of the “intrinsic morality” of medicine which depended on the nature of the physician-patient relationship. Such morality stems as much from what is not done as from what is done.

We need not agree upon any particular bioethical issue to realize the significance of the tactic, in how it can could be used by proponents of various acts to enlist, and yes, even pressure or legally mandate, the involvement of physicians. Or, for that matter, the involvement other people whose life work is viewed by society as having moral standing.

If PAS were to be legal across the US, would physicians buy into the idea that it is consistent with the underlying ethic, or intrinsic morality, or their practice? I predict that most would not. Recall the vision of abortion (when first made legal by judicial decree) being done by the patient’s family physician, which presumed a longstanding benevolent and wise relationship. This of course failed to happen, and abortions have since become centered in facilities where patient and doctor remain, by no accident, strangers. Most physicians do not want to be associated with abortions ( and none of the many family physicians I’ve met) because they know that there is a quality to the act that impacts them; it would not be benign simply because they did it. And it is not consistent with the underlying moral and ethical basis for their medical practice.

So it will be with physician-assisted suicide. The strategic involvement of physicians will most certainly mean that some will be involved. But most who could be involved will decline, knowing, or at least sensing, the inverted logic behind how physicians got pulled into the affair to begin with.

Good Ethics Requires Bad News

Some bad news took me by surprise this week, taking the form of an article in the Annals of Family Medicine entitled, “Why Medical Schools Are Tolerant of Unethical Behavior.”  The authors described a medical school graduation ceremony in which the speaker thanked professors and healthcare professionals not just for competent and humane care, but for providing examples of “pure unethical behavior.”

I wondered if my surprise at these circumstances was a bit of bad news in itself. Either I was blessed to be away from such an environment, or ignorant of similar problems around me. To some relief I found (after looking quickly) that the authors were from Brazil, but a book by an American author is but the most recent reminder that the problem resides between our shores as well.

The authors themselves seemed surprised by the audience’s lack of unease or objection to the allegation, and concluded that the professional environment must be tolerant of the behaviors. They asked why, and described these possible reasons:

  1. Barriers to reporting, due to fear of retaliation, lack of anonymity, and complaining seen as a sign of weakness;
  2. Leaders turning a blind eye to problems;
  3. “Systemic disrespect,” that is, widespread problems of the healthcare system that produce long waiting times for patients, excessive staff workloads, and a culture where mistakes are not acknowledged and apologies not made;
  4. Lack of accountability by accrediting organizations for ethical behavior.

They go on to discuss conflicts between explicit and implicit values, with the implicit ones being “culturally appropriate” yet far from admitted publicly. Such conflicts produce a systemic delusion, as well as cynicism in the young and developing healthcare professional.

That such a situation exists merely highlights how critical the truth is to ethical behavior. Organizational dishonesty, in whatever form, corrodes the integrity of individuals and provides fertile ground for unethical behavior. Integrity requires a willingness both to hear bad news and to give it. Values greater than one’s personal image, comfort, or success must be paramount, or else bad news becomes a problem unto itself, as opposed to a useful and necessary tool for ferreting out problems and making organizations better.

We can’t find such integrity from purely utilitarian arguments. The authors cite, unfortunately, only utilitarian arguments for building a professional ethic (increased costs, medical errors, etc.), reminding me how the language of virtues has long ago faded from modern societies. They do note utilitarianism’s inadequacies in the problem of “administrative evil,” in which “standard operational procedures within an organization inflict harm or suffering on individuals by blindly following a cold bureaucratic rationality committed for the ends but not the means to those ends.”

It is virtue ethics that is required to fight the corrosive effect of pure utilitarian thinking, for it reminds us that one of the ends produced when disregarding means is that one becomes the sort of person who uses those means. This requires an understanding of virtues and the central nature of the character of man to any ethical system.

I am not confident that modern society is ready to recover the lost language of virtue. Virtue, it seems, must not be spoken of, lest the speaker be subject to the vitriol as experienced in the strident denunciations of Christianity we hear more and more about. To escape our mean state, however, we must venture to do so.

To discuss virtues, in turn, requires that we articulate a robust vision of the telos—the purpose and ends—of the practice of medicine. A description of a state of being greater than our common existence, greater than mathematical calculations of gains and losses, would give direction and meaning to our efforts. It would enable us to see beyond self-interest, to make the necessary sacrifices for the truth, to move ourselves and our organizations along the road to that greater goal. For such a journey, bad news becomes not an impenetrable wall or obstacle to avoid, but merely a stepping-stone.

Bioethics Exam

In keeping with the evaluation-obsessed spirit of the time, here is a little bioethics test. No multiple-choice fill-in-the-bubbles here, no simple true/false; but bioethics usually isn’t so simple, is it? So it’s OK if you don’t have a No. 2 pencil, you can still take today’s exam!

_______________________

1. The patient-physician relationship depends on trust, and close observation, and appreciating subtleties, and giving one’s full attention to another person. So, who thought that making the doctor spend the office visit typing into a computer was actually a good idea???

2. Why does the NRA know better than physicians in Florida what they should be saying to their patients in the exam room?

3. What is just and right about a medical insurance system in which people have to stay in jobs they hate because of the fear of getting sick, and which bankrupts many people who get a serious illness? Give examples to support your answer.

4. If doctors have huge malpractice premiums, which they pay for by charging patients more for medical care, then essentially patients are paying doctors so the doctors can protect themselves from patients. Does this make sense? Explain.

5. Compare and contrast: Why should taking one’s own life be considered a more dignified death than any other? Is there really any dignity in death itself, or is it in the way that we face it?

6. Why should doctors be trusted more than anybody else with the right to kill someone?

7. If all of these prenatal genetic tests weren’t developed and marketed for specifically eugenic purposes, then just what were they developed and marketed for?

8. Is there any evidence that “evidence-based medicine” (aka statistic-based medicine) is better than whatever we did before?

9. Is abortion the problem, or is it the symptom of a lot of other problems?

10. In the DSM-V (the latest version of the official guidebook to diagnosing psychiatric illness), grief over the death of a loved one that lasts longer than two weeks can now be considered a disease and treated with medications. What will be the next normal human experience to be turned into a disease?

EXTRA CREDIT:

11. What does it mean to be human? Who gets to decide?

*  *  *

Since this is an ethics blog, you’re on your honor to score yourself fairly. Good providence!

Embodying a right to health care

In a residency applicant’s personal statement, I came across this sentence about a doctor working among impoverished rural people: “His presence embodies their equal right to health care.”

Equal right to health care. When speaking about rights, I always hear that one person’s positive right implies an obligation on somebody else’s part to provide something. For instance, one person’s right to health care implies that somebody else has an obligation to provide that care.

The applicant’s quote turns this idea on its head. Our system and government do not recognize a right to health care. But by his presence, the doctor is a witness that, although these people might not be able to pay for health care, these people are valuable, they deserve health care, and he will provide it. The doctor’s presence embodies what our system and government do not acknowledge.

The presence of health care-ers in the most difficult and impoverished and hopeless corners of our society is the testimony that, since the doctor has the obligation to care for all who are patients, everyone has a right to health care. Since, in this country, the right to health care is not guaranteed by our system or our laws, it must be guaranteed by us (I write as a physician), by individuals and groups of care-ers, doctors and nurses and PAs and NPs and therapists who enact others’ right to health care by caring. Our self-acknowledged obligation to care for the sick wordlessly, but eloquently, proclaims that all those whom we serve have an equal right to health care.

Maybe someday the system will catch up.

Contain AND Extinguish

Dr. Tom Frieden, Director of the Centers for Disease Control, wrote an article published on October 9th entitled, “Why I don’t support a travel ban to combat Ebola outbreak.” In it he provides ten arguments against a travel ban; these arguments can be categorized as those claiming that such a ban would be ineffective, harmful, and unnecessary. Unfortunately for Dr. Frieden, they raise more questions than they answer, and do not convince that a travel ban is unhelpful.

He begins by claiming “It’s not feasible to build a wall,” and that a travel ban would be essentially a “quarantine” for Liberia, Sierra Leone, and Guinea. Frieden adds that “quarantining huge populations doesn’t work”. How a travel ban would not have prevented the US’s two cases to date—one patient a traveler, and the other a nurse who cared for him—is not apparent. It is also not apparent how travel restrictions (a ban being only one option) do not work in general, for Frieden merely makes an assertion. It is just as easy, and perhaps more appropriate, to note that fighting individual cases involves exactly that, and that successful work against Ebola within healthcare facilities and communities does as well.

Frieden spends much more time describing the harms from a travel ban. He reports that a ban would drive patients underground, and cause other countries (presumably those who learn they have Ebola cases and fear a travel ban) to “stop working with the international community.” This begs the question what “underground” means, and if whatever that is presents more of a risk for spread of the disease. Whether other countries would stop working with us depends largely on our threshold for instituting a ban, for it seems unreasonable to institute a ban for small numbers. Is anyone arguing that two cases in the US ought to result in a ban against Americans leaving the US?

He also describes how a travel ban would mean we could not get Americans out, nor medical aid in. These arguments are the most specious, for we can certainly get out any American through military or other arranged flights, and travel restrictions would not have to apply to the arrival of medical supplies and personnel to the affected West African nations.

Frieden closes by listing actions other than a travel ban that are being taken that will suffice to protect the American people, including the screening in the affected countries of people prior to departure, as well as upon arrival.  If these will prove to be sufficient it is too early to know for sure, but they are no guarantee of additional cases arriving—most, but not all, inbound travelers from affected countries are being screened. Unfortunately, confidence in their effectiveness is also not achieved by descriptions of the screening methodology, including Frieden’s less-than-reassuring comment that, “if there’s any concern about their health, they’ll be referred to the local public health authority for further evaluation or monitoring.”

What hurts Frieden’s argument the most is own glaringly faulty argument from the analogy that fighting Ebola is like fighting a wildfire: “When a wildfire breaks out we don’t fence it off. We go in to extinguish it before one of the random sparks sets off another outbreak somewhere else.” But only going in to extinguish a wildfire works only when it’s not “wild,” that is, spreading rapidly. Then the fire has to be contained as well as extinguished. Internet searches of the subject produce findings such as this: “The basic principle in fighting forest fires is to create a gap, or firebreak, across which the fire cannot move.” Frieden’s argument would work only if the effort to extinguish were so robust that containment is not necessary. Testimony from the ground states otherwise: http://www.doctorswithoutborders.org/news-stories/voice-field/ebola-fighting-forest-fire-spray-bottles

One lesson learned from reading Dr. Frieden’s article is that to include arguments so easily refuted only hurts one’s position. And what further hurts his argument is the news of the vast amount of resources consumed in our country from handling just two cases, as well as for suspected cases. These efforts only detract from our ability to send medical support such as scarce supplies to the nations in need…and to provide care to our own people. We now need all clinics, emergency departments, and hospitals to maintain robust procedures and supplies to handle suspected cases. Consider the enormous and ongoing costs to the Dallas community from just one imported case of Ebola. The arrival of even a suspected case of Ebola at a healthcare facility results in it being cordoned off, rendering it inaccessible to other patients, either by fiat or fear.

A robust response within the affected countries is needed, as Dr. Frieden indicates. But it does not preclude other measures necessary to prevent the spread of Ebola and diversion of desperately needed resources. If the cases in the US grow in number, the costs will grow exponentially, for even the current CDC case definition (reliant on known exposure or travel from endemic areas) could be threatened. As the flu season approaches, and more and more patients appear in healthcare facilities with fever and vomiting, anything other than high certainty that Ebola is nowhere around will lead to a startling disruption of healthcare in our own country.

It’s not primarily about the guns

A recent article in Dignitas and a recent post to this blog discuss gun violence as a public health issue. I don’t know if the broad category of gun violence properly falls under the heading of public health, but one aspect of it certainly does: accidental firearm injuries in the pediatric population. It is difficult to obtain reliable statistics to say how prevalent this problem is, since Congress has blocked the CDC from firearms-related research since the early 1990s; I have read estimates that put it anywhere between the ninth- and sixth-leading cause of accidental deaths among children aged 1-14.

As a family doctor, I see pediatric patients for well-child exams. At these exams I provide “preventive guidance.” I ask patients and their parents about various age-apropriate things that have been shown to affect the health and life of children, and provide guidance where indicated. I recommend things like smoke detectors, infant/booster seats or seat belts, bicycle helmets, and fences around swimming pools. I recommend against smoking, drug use, and keeping bleach and aspirin where young children can reach them. I make sure parents have the phone number for the poison control center. And if there are guns in the household, I recommend they store them in a way that their young children cannot accidentally access them.

In 2011 Florida passed the Firearms Owners’ Privacy Act. This act provides that a doctor “should refrain from” asking a patient about firearms, unless he believes “in good faith” that the “information is relevant to the patient’s medical care or safety, or the safety of others.” Penalties for the criminals who don’t “refrain from” asking about firearms include fines and the loss of one’s medical license. The district court wisely blocked the law in 2012. However, the state of Florida appealed, and this past July the 11th Circuit Court of Appeals reversed the lower court’s decision.

This situation falls into the arena of bioethics, not because it has anything to do with guns; not because it has anything to do with pitting one Constitutional right against another; but because it is an unreasonable and unwarranted intrusion into the physician-patient relationship. As the appeals court wrote in its opinion, the government does regulate the practice of medicine. But the government proscribing what a physician can talk about with her patients? This is a far different thing than the government proscribing, say, the sharing of private patient information or participating in kickback schemes.

At the heart of the profession of medicine is the patient-physician relationship. This relationship is built on the foundation of one person acting altruistically in the interests of another person. The relationship is perverted when it is forced to serve the political agenda of an outside interest group. The precedent set by this law is corrosive to the fiduciary nature of the relationship, and should be overturned — and if not overturned, then ignored by all physicians who value the profession.