Starting With Curious

With the passage of the Affordable Care Act in 2010, I thought this question had been settled.  But as a new Congress and administration debate a replacement for Obamacare, it seems it’s re-opened the debate.  So I thought I would post a sermon I gave at Unitarian Universalist Church West in 2009; though a bit long for a blog post, it just seems very timely.

“It would be stupid to say that everybody is equal.  Some are rich and some are poor.  Some are beautiful and some aren’t.  Some are brilliant and some aren’t.  But when we get sick – then, everybody is equal.  Everybody must have equal right to the best medical treatment we can provide.  That is the basic rule of French health care. Surely, that is the basic rule of health care in every country.” – French physician Valerie Newman, quoted by TR Reid in “The Healing of America”

I want to tell you about a family from my resident clinic, over 25 years ago.  An adorable little 1 year old girl I’ll call Chantel and her 5 year old brother, being cared for by their grandmother after their mother left to pursue her drug habit full time.  The senior resident who took care of them before me told me how much I would like them, and sure enough, I quickly became attached to them.  Then when Chantel was 2, I did a routine blood count that came back markedly abnormal.  Because of her mother’s history, I suspected the worst, and soon confirmed that the little girl had AIDS.  I referred Chantel to several specialists to get the care she required, and she had to come to the hospital almost every couple of weeks for tests and treatments.  Her grandmother dutifully brought her to all these appointments, each time seeming a bit more stressed.  After a few months, the bottom fell out: she had missed too much work taking her granddaughter to the hospital, and she lost her job.  And of course, along with her job, she lost her health insurance.  My patient was now one of the uninsured. That statistic – with which Americans have been struggling for decades – now had a face, the face of a beautiful 2 year old girl with a devastating illness.  And having a loving grandmother is no match for being uninsured.  Appointments were missed, prescriptions went unfilled, and I learned later that eventually the little girl died.  While her death certificate listed the cause of death as complications of AIDS, I know what really killed her was our so-called health care system, supposedly the best in the world.

I will not ask for a show of hands, but I am quite sure that there are some in this room with the same condition as Chantel – uninsurance, that is.  If so, you are in plentiful company; with 45 million Americans affected, uninsurance is one of the most common health problems in this country, ahead of asthma and diabetes, and one that causes some 20,000 deaths each year.  Yes, we tend to think of lack of health insurance as an economic issue, but truly it is a health issue.  And even more importantly, I believe it is a moral issue, perhaps the biggest one facing our country right now.

One reason the health care debate has been so thorny and intractable since universal coverage was first proposed by President Roosevelt – Teddy Roosevelt, that is – is that it has been framed in terms of economics rather than morals.  Those who oppose health care reform find it easier to do so on economic grounds: it is much easier to oppose taxes or argue that the free market is more likely to achieve cost controls than to say it’s somehow “right” that Chantel should die because she couldn’t afford doctors or medications.  As Uwe Reinhardt, a Princeton health economist has said, “the opponents of universal health insurance cloak their sentiments in actuarial technicalities or in the mellifluous language of the standard economic theory of markets, thereby avoiding a debate on ideology that truly might engage the American public.”

And while the economic focus has been promulgated by opponents of reform, it has been readily accepted by many of its supporters as well.  Those who favor reform may feel that moral consensus is simply too difficult to achieve, and that selling health care reform as a way to promote economic growth and sound finances – as Bill Clinton among others did – is easier than asking the hard moral questions about who deserves access to health care and who is responsible to pay for it.  Yet as William Hsiao, a health economist at Harvard, says, “Before you can set up a health care system for any country, you have to know that country’s basic ethical values.  The first question is: Do people in your country have a right to health care?”  Our refusal to confront the moral dimensions of health care – our failure to make this basic question the starting point in the conversation – is a major factor in our lack of progress toward fixing our terribly broken health care system.

Let’s look at that first question: Do people in our country have a right to health care?  Few would argue that health care is an inherent or natural right like the right to individual conscience or self-preservation.  Rather, the question is whether health care is a “societal” right, something to which people are entitled by virtue of membership in that society.  Is health care such a right or, on the other hand, is health care a privilege, something to which no one is entitled except by his or her ability to pay for it?  In our society, for example, education is considered a right, while entertainment is a privilege.  Is health care more like education or entertainment?

Phrased that way, it would seem difficult to argue with.  Indeed, most of the world recognizes a right to health care.  Such a right is enshrined in the constitutions of most European countries, for example, as well as in the United Nations’ Universal Declaration of Human Rights, signed by the US in 1948, which states “everyone has the right to a standard of living adequate for the health and well being of himself and of his family, including food, clothing, housing, and medical care.”  Yet the US is unique among the wealthy developed countries in having no such legal statement of a right to health care, nor a health care system that would come close to upholding such a right.

Some have argued that a “right to healthcare” is incompatible with the American ethic of individual freedom and responsibility; achieving agreement on this would be as difficult as achieving agreement on abortion.  As a result, the question is rarely asked openly.  But is consensus truly so elusive?  Law professor Charles Dougherty has written “access to a decent level of health care is something Americans have come to expect.  We expect it not only if it can be bought, not only if it is given in charity, but as something which is ours, ours as a matter of right.”  And there are some data to support this contention.  For example, as long ago as 1952, the President’s Commission on the Health Needs of the Nation concluded that “access to the means for the attainment and preservation of health is a basic human right.”  President George H.W. Bush referred to a right to health care in his 1991 State of the Union Address, the first time that phrase had been used by a president.  And TR Reid, in his excellent recent book “The Healing of America”, reports that when Americans are asked in polls, “Do you think everyone has a right to medical care when they get sick?”, over 85% respond affirmatively.  Of course, the numbers vary somewhat depending on how the question is framed.  Nevertheless, there is broad agreement, it seems, on the basic principle.

With such a broad agreement, it should be easy to justify that response.  However, even among those who agree that people in the US have some kind of right to health care, it is trickier to get agreement on why that is so.  What is the moral underpinning of this right to health care?  In a society as diverse as ours, it should be no surprise that a variety of justifications have been put forward.  Some have invoked the Old Testament, where charity is not a suggestion but a commandment.  Walter Brueggemann, a biblical scholar at Columbia Theological Seminary in Decatur, GA, talks about the biblical notion of shalom, often narrowly translated as “peace”, but in his view it represents “God’s vision of well-being for all of the creation, at the individual and communal levels.”  Promoting peace, or shalom, means promoting the well being of all members of the human family.  Brueggemann also invokes the New Testament.  He points out, for example, that Jesus had an exemplary ministry healing the sick, and furthermore that he transformed the temple, which was the place for healing in the days before hospitals, from a bastion of the elite to a place of healing for all.  The Catholic Church seems to accept such an interpretation; for example, the Conference of American Bishops has stated plainly, “Every person has a basic right to adequate health care. This right flows from the sanctity of human life and the dignity that belongs to all human persons, who are made in the image of God. It implies that access to that health care which is necessary and suitable for the proper development and maintenance of life must be provided for all people, regardless of economic, social or legal status.”

I include these religious arguments mainly because this is a church, after all, but many of us would be uncomfortable basing a political right to health care on biblical imperatives.  But there are several other philosophical bases for the notion of a right to health care.  Such a right – indeed, rights in general – are framed in terms of justice.  The second principle that we as a UU congregation affirm is that of “Justice, equity, and compassion in human relations.”   What does justice mean in the social context?  Harvard scholar Michael Sandel, in his book titled simply “Justice”, writes “justice requires that everyone have equality of opportunity to make the most of their talents and skills.”

How does such a broad philosophical principle translate to practical political reality?  One answer comes from John Rawls, a highly influential 20^th century American political philosopher.  He promoted the idea that justice is rooted in individual liberty.  Distributive justice in a society must be based on choices made freely by the members of that society.  But what does it mean to choose freely?  If we gathered people together to choose principles to govern society, we could not help but be influenced by our current position.  Those with many resources, such as good health insurance, would undoubtedly favor principles that would preserve that status quo, while the less advantaged would be less enthusiastic about it.  And those with advantages often have them not because they somehow deserve more, but at least in part because of accidents of birth and pure luck.  Similarly, the disadvantaged cannot always be said to have earned their misfortune.  Choices made under those conditions that are imposed on us, that are beyond our individual control, cannot be said to be truly free choices.  So Rawls proposed that questions of social justice cannot be decided fairly by people in their present situations, but must be addressed from the perspective of what principles we would agree to in a hypothetical initial situation of equality.  We should consider such principles behind what Rawls called a “veil of ignorance”; that is, assuming we know nothing of our current situation or status.  What would we consider just under such circumstances, where all are starting from the same position?  Rawls, and others, argue that if each of us were starting from a position of equality, we would surely favor a more egalitarian way of distributing fundamental resources, including health care, than currently exists.  That is, we would posit that all members of society should have equal opportunity to access to that resource – we would have a right to health care as a matter of distributive justice.

It is important to note that a right to health care does not mean complete equality of health, or even of care.  As TR Reid says, the question is not whether we will all have the exact same health care, but rather how much inequality are we willing to tolerate?   In this way, I would again draw the analogy to education.  As a society, we have decided that children have a right to an education, and therefore we have an obligation as a matter of justice to provide a basic level of education to all children.  But we tolerate some degree of difference between children who live in wealthier vs. poorer school districts, and we accept that there are co-existing public and private education systems that are no doubt unequal.  Moreover, the right to an education is no guarantee that all children will achieve the same grades or have the same IQ.  But we accept the idea that equal access to education – that “equality of opportunity to make the most of their talents and skills” – is a right in our society.  Acknowledging even this much of a right to health care would mark a major change and would have profound implications for how health care is delivered in this country.  Yet despite some indication that such a right to health care is broadly accepted in the US, it is rarely stated in such an explicit way.

Many writers and thinkers are uncomfortable with the notion of health care as a right.  The word “rights” has come to conjure images of aggrieved people demanding justice.  Think, for example, of civil rights – the first things that come to mind are the struggles for those rights, such as sit-ins, freedom rides, protests.  Demands for rights, justified as they might be, often come across as shrill or strident.  Such images of the underprivileged marching to demand health care is an uncomfortable one, and one that could easily be exploited by opponents of reform.

As an alternative, some have suggested that health care is not a right to which all are entitled, but rather that it is a charitable obligation that society is required to provide.  This distinction between a right and charity is not simply semantic.  The argument for a right is based on considerations of justice, while a charitable obligation is based on the principle of beneficence, the requirement to do good.  To some extent, this may be merely splitting hairs, since the end result of accepting such a moral obligation in the US as a matter of charity would result in similar changes in the way we structure health care to provide more universal access as would accepting health care as a right due us as a matter of justice.

But this is more than a semantic difference, in that rights are more readily defended, while charitable obligations are more easily cast aside, however reluctantly, in the face of competing obligations.  Charitable obligations should be upheld, but rights must be.  Much of the debate around health care has centered on the cost.  Sure, it would be the decent thing to do to provide health care for all, but we cannot afford to do so with so many other needs to be met.  If health care is merely an obligation based on a notion of charity, such a choice not to provide health care could be morally defensible, if other needs are deemed to be greater.  But what do those choices say about our values?  Uwe Reinhardt, the Princeton economist, says that each year’s federal budget should be thought of as a “memo to God” about our society’s collective priorities.  Right now, that memo suggests that we are not a particularly charitable people.

I believe that health care is a right – a matter of justice, not charity.  Good health is the basis for all other pursuits – one cannot work, play, or in any way thrive without health.  If justice requires, as Michael Sandel says, “equality of opportunity to make the most of our talents and skills,” then surely access to health care must be at the top of any list of claims to being our right in this affluent society.   What kind of country is it where wearing a semiautomatic weapon strapped to one’s thigh is a right, but going to a doctor when you are sick is a privilege?  When my patient Chantel was in the hospital with her complications from AIDS, she had a legal right to have a tutor provided for her, but no legal right to the medical care itself – that was provided as a matter of charity by the hospital.  Does that make any sense?  Shouldn’t she have as much right to health care as her grandmother, who is eligible for Medicare?  Shouldn’t we all?

As I noted earlier, deciding on whether there is a right to health care in a given society is the first question.  That question must be asked and answered plainly if we are to move forward in the current debate.  Once that question has been answered, and if indeed we have a right to health care, other moral questions follow in deciding how to guarantee that right.  These are perhaps thornier issues, and I will simply touch on them to stimulate your thinking.

The question of morality in the context of health care reform is perhaps most often raised around the issue of rationing to control costs.  Rationing exists in every system – the question is how is it done. If there is only so much to go around, how do we decide who gets what?  If health care is considered a commodity, as it is in our current system, then the decision is made by the market, with health care going to those who can afford it.  Make no mistake: this is rationing, albeit implicit rationing.  If one accepts that in general we get what we deserve and we deserve what we get, then this could be considered a fair and moral solution.  Health care according to ability to pay has a certain resonance in our society, with its emphasis on rewards for hard work, but surely one must recognize that the distribution of riches in our society has a certain element of arbitrariness.  Who would “deserve” a kidney transplant more, Mother Teresa or Bernie Madoff?  Is someone who chooses, or is forced, to work for a small business somehow less deserving of healthcare than another who works for a large corporation or government?  What about someone who is laid off – does she deserve health care less than her co-worker who survived the downsizing?

Now on the other hand, if health care is a right, such decisions need to be made in a way that is just and equitable, and that might mean explicit rationing.  This notion is, I confess, a difficult one.  If I were told that I could not have a kidney transplant because I was too old and less likely to benefit than my younger neighbor who needed it, I’m not sure I would agree that was fair and just.  On the other hand, if I were told that the choice between us were to be made by a flip of a coin, how would I feel if I lost?  How would I feel if I won?   If health care is a right, how do we fairly distribute the limited health care resources we have?

I have argued that a flaw in the discussion around health care has been the focus on economic rather than moral issues.  But some economic aspects of health care have a moral dimension we must confront.  One is the notion of profit making.  Is it moral to profit from the ill health of others?  We allow people to profit from selling food, water, and other necessities.  Why should health care be different?  But there are limits to our tolerance of profit.  When water was scarce in New Orleans in the wake of Hurricane Katrina, those who attempted to maximize their profit by charging many times the usual amount were almost uniformly denounced.  It discomfits us when profit turns into greed, or when someone attempts to take advantage of someone else’s desperation.  Selling food for a reasonable profit to those who can afford it is one thing; gouging the starving is another.  Where does health care fall?  Is someone seeking health care by definition in a disadvantageous situation, analogous to the thirsty Katrina victim?  Would this apply only in certain situations – say, limiting the ability to make a profit in an emergency, but allowing it for routine care?  If health care is a right, should there be limits to how much profit one should ethically make in health care?

A related question concerns compensation for those who work in the health care field.  I will tell you quite frankly that among the factors contributing to the high cost of health care in this country, and to the difficulty in accessing it for so many Americans, is the high salaries enjoyed by those in the medical profession – not only the multi-millionaire executives at the pharmaceutical companies and insurers, but the physicians.  In most developed countries with universal health care, physician salaries are comfortable but far less generous than in the US, typically one-quarter to one-third that of their American counterparts.  In France, Germany, and Japan, the average physician salary is similar to that of a midlevel corporate executive – comfortably middle class, but well below what many doctors in America have come to expect.  As one Japanese orthopedic surgeon says, “In Japan, doctors don’t get rich.  We make a decent income.  [And] we have the pleasure of practicing our specialty, and helping people who are in pain.  But getting rich is not part of the expectation.” Some of this is offset by far lower educational and malpractice costs, but in the end, it is also a moral issue.  If health care is a right, what is a fair compensation to those who provide that health care?

These are profound ethical questions that must be addressed as we shape the future of health care in this country.  The answers to these questions will say much about what we believe in and stand for.  They will be part of our “memo to God”.

Any meaningful reform of health care in this country must first recognize the right of all to an adequate level of care, not because we are charitable people, not because it is a nice thing to do, but as a matter of social justice.   The standard by which reform proposals should be judged is whether they recognize this right first and foremost.  In the time we have been sitting here this morning, two people have died as a result of lack of health insurance, two more victims like Chantel.  That is an injustice and a moral outrage, one we as Americans must not sit by and tolerate.  As the French doctor in my reading said, “ When we get sick, then, everybody is equal.  Isn’t that the basic rule of health care in every country?”  Well, it’s not, but isn’t it time it was?

People are often surprised to find out I was overweight as a child.  (They might not be if they saw me around the piles of holiday cookies and candies the past few weeks.)  By current standards I might only have qualified as pudgy, but at the time I was considered fat.  I lost weight in high school by dieting, gained it back in college, and then began exercising while in medical school (my main form of exercise before that was avoiding gym class).  For the past 35 years I have been at essentially the same weight.  Which begs the question – is that due to genetics or environment?  Was my overweight childhood a fate that I was able to overcome through behavioral change, or is my genetic destiny to be thin, albeit temporarily derailed by the excesses of a food-centered Long Island upbringing?

With obesity and its attendant morbidity and mortality one of the most critical public health challenges facing America and the world, this question of nature or nurture is an important one.  It’s also a silly one.  There is virtually no health condition that is solely genetic or environmental; everything is a result of complex interactions between the two.  And while obesity is undoubtedly due to both, the modern obesity epidemic can only be explained by the environment.  After all, the human genome hasn’t changed a lot in the past 40 years.  Our environment has.

Now, when it comes to treating obesity, acknowledging the role of genetics is important, to prevent moralizing about “willpower” on the part of health professionals, and to establish appropriate approaches to weight loss and reasonable expectations.  But with obesity, as with almost every other public health problem, prevention is better than treatment.  And that won’t succeed until we understand and acknowledge the critical role of the environment.

Studies have uncovered associations between the rise of obesity and a variety of environmental factors, including not only modern behaviors like a sedentary lifestyle and larger portion sizes, but also passive elements of the environment such as proximity to sidewalks and parks; the widespread substitution of high fructose corn syrup for sugar (not all sweeteners are equally obesogenic, it seems) and the addition of sweeteners to nearly every processed food; other common food additives like emulsifiers, found in everything from mayonnaise to ice cream, that can produce harmful, obesity-promoting changes in our normal gut bacteria; and a host of endocrine-disrupting chemicals that are nearly ubiquitous.

So why do we keep seeing stories blaming our genes?  I have two theories.  First, as with almost everything else in the American healthcare system, the financial and other incentives are geared toward treating disease, not preventing it.  And surgical and medical treatments that change your biology are probably more effective than those based on behavior change, more appealing , and more profitable.  Second, those environmental factors contributing to the obesity epidemic are themselves part of multi-billion dollar industries.  There is a strong incentive to distract the blame.  A recent analysis of studies of the relationship between soft drinks and obesity, for example, found that industry-sponsored studies were 34 times more likely to find no association between drinking soda and obesity than those without industry funding.  Such conflict-of-interest bias is not unique to this issue, but the article notes that a more typical degree of bias is a 2-5 fold relative risk in favor of a company’s products.  When it comes to obesity research, even the biases are supersized.  And the biggest loser is the public.