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.

Ethical Health Care Reform

Recently I heard a Christian TV personality refer to Obamacare as “iniquitous.” This started me thinking, What would make a health care funding reform scheme “iniquitous”? Or, although the words aren’t synonymous, what would make such a scheme unethical? What should go into ethical health care reform?

The answers to these questions are legion and conflicting. There are some who see government intervention as inherently wrong; for them, the free market is the key to ethical health care reform. There are others who distrust the free market, and consider some degree of governmental control to be the only ethical option. Some see personal mandates to buy insurance as unethical; others understand the mandates as ethical solidarity with our neighbor. Some ardently believe justice means everyone gets exactly the coverage or treatment they pay for; others just as ardently believe justice means everyone gets the same coverage and treatment.

What is ethical health care reform? There are many possible answers. I am not sure that Obamacare is any more or less ethical than the versions of Trumpcare that have been put forward. I am not sophisticated or smart enough to pontificate about the free market or theories of justice.

One thing I am certain of, however: Whether the system relies on markets or government regulations, whether there are more or fewer mandates or taxes, whether everyone gets the same coverage or not, one final measure of whether or not a health care system is ethical is how it treats those who are the poorest and most disadvantaged among us. If those who are least able to provide for themselves are not provided for and granted access to the system, then it is an unethical system.

Health care disparities: a pro-life issue

This month’s Health Affairs carries an article examining the correlation between one’s income and one’s perceptions about one’s own health and health care. Worldwide, those with the lowest incomes feel that their health is worse than those with the highest incomes do. They also are more likely than those with higher incomes to skip necessary treatment because they can’t afford it, and are more concerned that if they become seriously ill, they won’t get the best treatment their country has to offer. Perhaps not unsurprisingly, the United States has one of the greatest disparities between those with the lowest and highest incomes. But at least Americans are also the most aware of this disparity: 67% of US respondents, the highest number of any in the world, agree that “many” people in the US do not have access to the health care that they need. This is a good thing: awareness of a problem is the first step towards fixing it.

But what if we are aware of the problem, yet don’t really think it’s a problem? Only 54% of us in the US think it’s unfair that people with higher incomes can afford better health care than those with lower incomes. What if we see unfairness, but don’t recognize it as unfair?

In his post to this blog on June 6th, Mark McQuain asked what our number one bioethical issues are. As a physician who is privileged to care for a wide diversity of patients — from higher-ups in large corporations to those struggling to support a family by working two jobs and driving Uber — I see daily the very real differences between those who are granted full access to all our health care system has to offer, and those who get only the scraps from the health-care table: differences not just between healthy and sick but between life and death. The ones on the lower end are disproportionately the poor, the widows and single mothers, the aliens among us. I am pro-life; since access to health care can be a life-and-death issue, it is part of my pro-life identity to advocate for access to health care for all. The disconnect between recognizing inequity in access to health care and recognizing that we should try to do something about it is deeply disturbing to me. At this time and place, the injustice (and the recognition that it is injustice) in the inequity of access to health care based on income is the number one bioethical issue on my list.

But at least we don’t have socialized medicine

I just read T. R. Teid’s 2009 book The Healing of America. It’s a timely read in light of the bar brawl over health care that’s brewing in the U.S. legislature this week. Of particular interest are his snapshots of the health care systems of the UK, France, Germany, Japan, Taiwan, Canada, and Switzerland, systems about which I held many cherished misconceptions. All of these countries provide universal health care coverage for their citizens, but they do so in very different ways. Some countries are single-payer systems; in other countries, costs are paid by multiple (not-for-profit!) insurance companies, and employers and workers share the cost of insurance premiums. In some countries patients must pay a co-pay, in others they never see a bill. In some countries people have long waits for specialist care, in other countries they get in the same day. Despite the differences, there are some very important similarities. First and foremost, everybody in the country is covered and has access to health care. Everybody can see any doctor; none are “out-of-network.” By almost every population health measure from childhood mortality to life expectancy, these countries far surpass the United States. And they do so at a cost that is a fraction what the United States spends for health care.

The attitudes expressed by representatives of the various countries are revealing. In France, one doctor says, “It would be stupid to say that everybody is equal . . . But when we get sick–then, everybody is equal.” The founder of Germany’s system, Otto von Bismarck, called it “applied Christianity,” and said, “A rich society must care for the poor.” Japan has an individual mandate; everyone must sign up with a health insurance plan. As one Japanese doctor said, “It’s considered an element of personal responsibility, that you insure yourself against health care costs. And who can be against personal responsibility?” The report that helped launch Canada’s Medicare system reads, “Economic growth is not the sole aim of our society. The value of a human life must be decided without regard to . . . economic considerations. We must take into account the human and spiritual aspects involved.”

Reid reiterates several times that he believes that societies have a moral obligation to make health care universal. But in this country, there is another mindset, another ethic, that stands in opposition to that view: the view that at best government has no business getting involved in health care, and at worst that government is evil and must be prevented from extending its nefarious reach into health care. Adherents to this ethic often use the term “Socialized Medicine” in a pejorative sense to refer to any health care system that has more government involvement than their own. According to this ethic, the spectre of Socialized Medicine covers a multitude of sins, as in:

  • In our system millions of people don’t have access to health care. But at least we don’t have Socialized Medicine.
  • Untold numbers of people are afraid to leave jobs they dislike because of health insurance concerns. But at least we don’t have Socialized Medicine.
  • Despite paying way more than any other country for health care, our country has worse health outcomes. But at least we don’t have Socialized Medicine.
  • Many people can’t go see their doctors that they have seen for decades because they are suddenly not “in network.” But at least we don’t have Socialized Medicine.
  • Our for-profit health insurance companies have the highest administrative costs in the world, which is a large part of the reason we pay so much more for such lower quality. But at least we don’t have Socialized Medicine.
  • Thousands of people — uninsured and insured — face financial ruin every year because of medical costs. But at least we don’t have Socialized Medicine.
  • Thousands of people die each year in our country because of diseases that could have been treated had they had access to health care. But at least we don’t have Socialized Medicine.

If we really think Socialized Medicine is so evil, then we had best scrap that purest form of Socialized Medicine which is in our midst: the VA system. While we’re at it, we really ought to dismantle Medicare as well. But if we’re not willing to take those simple steps — if Socialized Medicine is after all not quite so evil in these instances — then we should be willing to debate different forms of financing health care on their own merits, and not merely dismiss any discussion with a nebulous term that we fondly imagine carries such moral weight that it lays to rest all other urgent ethical questions about our own system.

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 people who don’t deserve health care

By all accounts, since the beginning of the implementation of the Affordable Care Act (ACA, a.k.a. Obamacare), many previously uninsured people now have medical insurance. The ACA has expanded access to health care. However, many millions still do not have medical insurance: some by choice, but many because they still can’t afford it, even under the provisions of the ACA. And there are many others who now have insurance, but still can’t afford health care.

It is these latter groups, the ones that can’t afford insurance or health care, that particularly interest me here. Because these are the ones who by design of the law cannot afford health care. The law was written, deliberated, and passed with the full knowledge that as it was implemented, some people still would not have access to anything except emergency health care. The law excludes these people from access to health care.

Who deserves not to have access to health care? The unemployed? Those employed at minimum-wage jobs? Undocumented immigrants? “Welfare Moms”? Black inner-city families? Drug addicts? Lazy thugs?

Whoever it is, we as a nation — our government — obviously believe that some people don’t deserve access to health care. Otherwise we wouldn’t enshrine in law a health-care delivery system that doesn’t deliver health care to everybody.

And will a health care reform plan constituted by the two words “Repeal Obamacare” do any better?

Liberal Limitations of Autonomy

I’ve recently spent many hours pouring over publications of the American College of Obstetrician/Gynecologists (ACOG)–something I rarely do–in preparation for my board recertification exams next week. In all fairness, and despite my negative attitude toward this newly instituted requirement, I confess that I have learned, or relearned, a few facts of practical clinical importance. However, I have also discovered many glaring inconsistencies in ACOG’s recommendations for patient care based on their desire to present “evidence-based” data—evidence that varies from study to study. In addition, one seemingly inconsistent ethical position also surprised me: ACOG’s opposition to sex selection techniques, whether pre- or post-conceptual (Committee Opinion 360).

Concerning the issue of sex selection, the American Society for Reproductive Medicine (ASRM) opposes post-fertilization/pre-implantation sex selection for non-medical indications because it “necessarily involves the destruction and discarding of embryos.” While ACOG does not oppose post-fertilization or post-implantation sex selection techniques for medical indications such as X-linked genetic disorders, it too opposes sex selection for personal, social, economic, or cultural reasons. But ACOG’s opposition is not based on the destruction of human embryos: ACOG opposes such desires because of the risk that they are motivated by “sexist” attitudes that reinforce the devaluation of women. They state, “individual parents may consistently judge sex selection to be an important personal or family goal and, at the same time, reject the idea that children of one sex are inherently more valuable than children of another sex. Although this stance is, in principle, consistent with the principle of equality between the sexes, it nonetheless raises ethical concerns…it often is impossible to ascertain patients’ true motives for requesting sex selection procedures (italics mine)…even when sex selection is requested for nonsexist reasons, the very idea of preferring a child of a particular sex may be interpreted as condoning sexist values and, hence, create a climate in which sex discrimination can more easily flourish” (note the “slippery slope” argument).

Wait a minute…what happened to autonomy? What about a woman’s right to choose? ACOG has always supported abortion on demand—a woman’s right to terminate the life of her unborn baby at any stage for any reason–no questions asked. Why can she then not choose to carry a baby of a particular sex? Why and how do motivations—which even they admit no one can truly know–limit a woman’s right to choose? It seems that there is a “higher principle” at work here that can limit a woman’s autonomy: the principle of equality of the sexes.

It is difficult to see how such a nebulous principle as “equality of the sexes” can serve as a limiting principle to autonomy. Are they referring to qualitative or quantitative aspects of equality? Perhaps they perceive it to be an issue of justice, for justice does indeed at times serve as a check and balance on personal autonomy. But it is unclear why it is acceptable to destroy the unborn because they are perceived to be a personal inconvenience, but impermissible to do so for other reasons of personal preference? They seem to be saying that a woman’s autonomous choices can be trumped by societal justice but not by the individual justice due the unborn. Terminating the life of the unborn is acceptable as long as it doesn’t violate societal values.

But even more sinister is the fact that not only does the life of the unborn have no intrinsic value, its moral significance is contingent upon whether its “beingness” promotes values and agendas of others, whether those of the mother or–if the mother’s values are not properly aligned–of society. That makes the moral status of the unborn merely a “means” to the ends of others, ends which change as frequently as the tides.

Perhaps we should rejoice that at least in this one area of women’s reproductive health, the position of ACOG is, in part, consistent with those who value life from conception. But motivations and foundational values are indeed important. We should not be quick to join forces with those whose convoluted ethical position is nothing more than a house of cards built on the sinking sand of social values.

Thoughts on varied subjects: commercial surrogacy, professionalism, and Obamacare

A potpourri of stories from this week that prompted bioethical musings, in no particular order . . .

The BBC News website ran a fascinating, heartbreaking story this week about women in India who are paid to gestate other women’s babies: commercial surrogacy, a billion-dollar-a-year industry in India. The main figures in the story — a woman named Vasanti living in a dormitory for commercial surrogates, who is carrying a baby for a Japanese couple; and the doctor who runs the IVF clinic and dormitory — spend much of the story talking about how positive the practice of surrogacy is. Thus it is jarring — and revealing —  to get to the last sentence in the story, where Vasanti says, “. . .we want a good future. That’s why we [did] this, and not in my entire life do I want my daughter to be a surrogate mother.” (Italics mine)

***

Last week’s JAMA ran a narrative by Gordon Schiff, MD, which begins,

It’s 5 PM on a Friday afternoon. After 2 hours on the telephone trying (and failing) to get her insurance plan to pay for her medication refill, I reached into my pocket and handed the patient $30 so she could fill the prescription. It seemed both kinder and more honest than sending her away saying, “I’m sorry I can’t help you.” While I hardly expected a commendation for such a simple act of kindness, I was completely surprised to find myself being reprimanded for my “unprofessional boundary-crossing behavior” after the resident I was supervising shared this incident with the clinic directors.

(If you have a JAMA subscription you can read the whole thing here, otherwise it has been reposted for free  here.) Dr. Schiff’s reflections on this incident are eloquent and worth reading and pondering. From the perspective of a Christian physician who also works with the underserved, I am saddened at how far our profession strays from its moral foundations when  a detached, medicine-as-business model replaces the self-giving care that Christ modeled.

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You may have missed it, but new provisions of the enormous law affectionately known as “Obamacare” went into effect this week with the beginning of open enrollment and the opening of online insurance marketplaces. The new law is extremely complex and promises to raise health insurance costs for many, including myself, at least in the short term. Lots of people are complaining about it, some more savagely than others. Many of my colleagues and patients have bemoaned it, and with good reason. But there is one group who have not complained to me about it at all: my patients who do not have, and until now have not been able to afford, health insurance.

Reflections on the Olympic opening ceremonies

Of all the quirky elements that went into the opening ceremony of the London Olympics (think Shakespeare, James Bond, Voldemort, and — Mr. Bean?), the quirkiest to me was the tribute to the National Health Service (NHS). Wondering whether the acclamation was the idiosyncratic view of the ceremony’s director or reflected the attitude of the British public, I went online to do a (thoroughly unsystematic) search regarding Brits’ perspectives the NHS. I found a wide range of opinions, from complaints and disgust (Google “I hate the NHS” for a sample), to praise, to prophecies of doom. But overall, even when the British have bad things to say about the NHS, most express some degree of pride in it: and the thing that they are most proud of is that their health system provides access to everybody in the country, for no cost at the point of care.

In my (totally unscientific) research, I came across many websites debating the relative merits of the NHS and US healthcare. Those who favor US healthcare, while acknowledging that it has its problems, also express pride in it: and the thing that they are most often proud of is its unparalleled technology, its shorter wait times for many tests and procedures, and its vigorous R&D.

Now I am not here arguing for an NHS-like system in the US. But change of one kind or another is coming to how we fund and deliver health care. Wouldn’t it be grand — wouldn’t it be right — if we end up with a system in which we can be proud of the fact that we provide access to health care even for “the least of these,” and not just our technological prowess?