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.

Advance Care Planning and its Detractors

The default mode of our technologically advanced medicine is to use our technology. Nowhere is this more true than close to the end of life. And our technology is really impressive; with it, we can keep chests going up and down and hearts beating for a long, long time.

The troubling thing is that there are many people who would rather not have lots of machines keeping their bodies going, thank you, maybe you could just give me some oxygen and pain medicine and let me die at home with my family? But they never get a chance to talk about it with their doctors, mostly due to doctors’ lack of time or comfort in addressing such questions. And, unlike every other procedure in medicine, doctors don’t need your permission to do one of the most invasive procedures of all to you: CPR. Of course, CPR is generally performed on someone who is indisposed and unable to give their informed consent to the procedure. And CPR is often the first step on the technological path of ventilators, tubes, dialysis, medications to support the blood pressure, machines that keep the heart pumping, and all of those wonderful interventions that are life-saving when used appropriately and death-prolonging when used indiscriminately. Treatments that treat . . . nothing.

Ideally, doctors take time to discuss patient preferences about such treatments with patients and their families before the occasion to intervene arises; however, the factors noted above make such discussions rare. Those discussions are ideally an exploration of patient values and expectations from health care, and a translation of those values into appropriate medical interventions. They also identify people who are familiar with the patient and their values who can act as surrogate decision-makers should the patient not be able to make or express their own desires in a particular situation.

Because of the difficulties finding time for these important discussions, it was proposed as part of the Affordable Care Act (aka ACA, aka Obamacare) that Medicare reimburse doctors for the time they take to counsel patients and find out their preferences for end-of-life care. In an act of breathtaking rhetorical deception (aka lying), these discussions with patients, meant to elucidate their preferences for care, got labeled as “Death panels.” (I am not making this up.) The proposal was dropped from the ACA.

Then, in 2015, Medicare started reimbursing physicians for having The Conversation. But last month a Representative King introduced a bill in Congress, deceptively titled the “Protecting Life Until Natural Death Act,” which would revoke such payments.

Fortunately, the bill’s fate is “highly uncertain.” It should never see the light of Congressional day. It propagates the idiocy that lay behind the charges of “Death panels.” And rather than promoting “Natural Death,” it will lead to more people dying anything but a natural death; instead, they will be dying a technological death, hooked to lines and machines and drugs — things they would never have wanted or received had they only had a chance to talk it over with their doctor.

Apologies and Outcomes

What if a study shows that the course of action we know to be right doesn’t “work”? Or that it may even place us at a disadvantage?

When bad things happen to patients in the course of medical treatment, doctors traditionally have avoided apologizing or even expressing sympathy to patients, for fear that such expressions would be used against them in malpractice court as an admission of guilt. So multiple states have passed “apology laws” excluding such expressions from trials, in order to encourage doctors to make apologies. The underlying idea is that the act of apologizing helps to enhance communication between patients and physicians and to assuage some of the anger that leads people to sue their doctor, thereby reducing the likelihood of a malpractice suit.

However, a recent extensive study found that in states where apology laws are on the books, doctors’ risk of malpractice suits actually increased, as did the average payment to settle a claim.

Assuming for the sake of argument that the results of the study are valid, what conclusions are we to draw from them? It seems like a right, normal, ethical, human thing to do to apologize when we have harmed someone. Should doctors avoid apologizing to patients if it will increase their risk of a malpractice suit? More generally, how much do we allow outcomes (a major buzzword in medicine these days) to influence our moral reasoning and acting? Take, for instance, the opposite scenario: What if a wrong action is shown to have a beneficial result? For example, what if a study showed that a stem-cell therapy that relied on destroying embryos would effectively cure diabetes, or Alzheimer’s? Should such a compelling good outcome sway our moral reasoning and acting?

Outcomes need to be taken into account, but they must not be the only or the overriding factor in making ethical decisions. Just as a potentially good outcome does not make it more right to destroy an embryonic human, a potentially bad outcome does not make it less right to apologize to a fellow person when we have done them harm.

Today

Today is a particularly significant day, and not just because it is the 261st birthday of Wolfgang Amadeus Mozart.

Today was the March for Life in Washington. “Life is winning again in America,” Vice President Mike Pence said to the gathered crowds.

Today President Trump signed his “extreme vetting” executive order which, among other things, bans Syrian refugees until further notice, and caps refugees entering the US in 2017 at 50,000, out of fear that radical Islamic terrorists will smuggle spies and saboteurs in with refugees.

Today is also the 72nd anniversary of the liberation of Auschwitz, the Nazi death camp where an estimated 1.1 million Jews and others were killed. Many of these Jews might have been able to flee to the US but for the fact that at the outbreak of World War II, “immigration officials tightened visa policies for immigrants and non-immigrants . . . out of fear that the Nazis could smuggle spies and saboteurs in with refugees.”

Life is winning again? Really?

 

(Quote found here.)

Conflicts of Interest in unsuspected places

Patient advocacy organizations — groups such as the American Cancer Society, the American Diabetes Association, the Arthritis Foundation — are non-profit organizations that seek to help patients with a specific disease or disorder by providing services to patients, sponsoring research, influencing government and insurance policy, and promoting and promulgating guidelines that are followed by doctors and patients to diagnose and treat disease. They are sometimes viewed as altruistic voices for powerless patients, providing a necessary counterweight to evil (or at least uncaring) government regulators and policymakers who are only interested in saving healthcare dollars at the expense of helpless sick people.

A study from this week’s JAMA Internal Medicine suggests the picture may not always be so clear. The study authors surveyed a random sample of leaders from 7800 or so patient advocacy organizations. 68% of them reported receiving funding from for-profit industry groups including pharmaceutical, medical device, and biotech companies. About 10% reported receiving more than half of their funding from industry sources, and 8% of respondents “perceived pressure to conform their positions to the interests of corporate donors.”

Patient advocacy organizations are “influential health care stakeholders.” They have accomplished many unarguably beneficial advances for patients. But part of their positive influence is due to the perception that they are not entangled in the financial conflicts of interest which have been so well-documented among physicians, physician specialty societies, and clinical guideline authors. And in my experience, this perception has sometimes led patients to insist on following the recommendations of an organization that knows little of their personal circumstances rather than following the recommendations of their personal physician. For the sake of transparency and good patient care, it is important to ensure that these organizations, which maintain that they speak for patients’ interests, are not beholden to the interests of companies whose aim is to benefit financially from those same patients.

 

 

 

 

 

 

(DISCLAIMER – It is sheer coincidence that a blog post about Conflicts of Interest is appearing on the same day as the Presidential inauguration.)

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.

Gattaca validated

In the made-for-bioethics movie Gattaca, when the main character Vincent is born, a nurse in the delivery room draws a drop of his blood, places it in the nifty instant genetic analyzer, and intones, “Heart disorder: 99% probability. Early fatal potential: life expectancy 30.2 years.” (Spoiler alert!) However, Vincent doesn’t let this genetic version of a horoscope control his life, but goes on to beat the odds — and his society’s rampant genetic discrimination — to live and succeed, proving that, contrary to his society’s beliefs, genetics are not determinative.

Now a study in the New England Journal of Medicine has confirmed the message of Gattaca. The study examined patients who have genetic risk factors known to predict heart disease (“Heart disorder: 99% probability”). It also analyzed these patients’ heart-healthy behaviors: eating a reasonable diet, getting some exercise, avoiding smoking, and the like. The study showed that even for those with the highest genetic risk of heart disease, patients who practiced heart-healthy behaviors had less heart disease than patients who didn’t; and that the patients in the highest genetic risk group had the greatest reduction in risk when they practiced such behaviors. In fact, they cut their risk in about half.

Sure, genes confer risk for heart disease. But contrary to popular understanding, they do not confer inevitability.

Over and over I hear my patients say to me, “It’s in my genes. It must be genetic.” They usually are talking about something that they feel they have no control over. Too often they have swallowed the line from the press and pop science, the line that says that genes are determinative. If you are looking to absolve yourself of responsibility for who you are and what you do, the whole determinism thing is extremely convenient: “I can’t help it: it’s in my genes,” you say, smiling gently as you take one more drink too many with your mistress while driving 85mph down the highway, comforting yourself with the “facts” that alcoholism, infidelity, and risky behavior are all genetically determined.

However, if you feel that you’re a responsible human being whose choices actually mean something, you might be thinking that the whole determinism thing is a little fishy.

Genes do exert influence. They are a risk factor in many conditions. But they have been portrayed as way more controlling than is warranted. We are not puppets dangling on doubly-helical strings. There are many things influencing our lives: environmental and socio-economic and biologic and emotional and spiritual and, yes, genetic factors. They all affect and expand or limit our choices. But it is still we who must make the choice. To the situations that affect us we are to a greater or lesser extent able to make response — we are “response-able” — and must not take refuge in our genes, or any other abstracted part of our humanity, to reduce ourselves to automatons following an inexorably pre-determined path.

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.

A novel strategy for suicide prevention

In the Netherlands, a doctor will not be prosecuted for assisting a patient to die either through euthanasia or assisted suicide (EAS) if certain conditions are met, among which are the following: The patient’s request for aid-in-dying must be voluntary and well-informed, without coercion from others, and uninfluenced by psychological illness or drugs; their suffering should be unbearable and hopeless, with no prospect for improvement and without reasonable alternatives; and an independent physician should be consulted, who should concur with the aforementioned conditions. Supporters aver that these guidelines have made physician-assisted death safe and have avoided the “slippery slope” that detractors and fear-mongers fulminate about.

A commentary (preview available here) in last week’s JAMA gives cause to question the rosy picture some paint of the Netherlands experience. The commentary refers to a study that appeared in the April 2016 JAMA Psychiatry. The study describes the practice of EAS for psychiatric disorders in the Netherlands, reviewing 66 patient reports filed by physicians from 2011 to 2014. Surprisingly, only 49 of the 66 patients experienced depression. Thirty-four had at least one prior suicide attempt. Six had substance abuse, two a diagnosis of autism. Thirty-four had personality disorders; 13 had never had a psychiatric hospitalization; 37 described social isolation or loneliness. Thirty-seven of the patients had refused some recommended treatment. In eight cases, the involved psychiatrist believed that the criteria for EAS had not been met. Eighteen cases involved physicians who had not cared for the patients before the EAS request; most had met the patients through mobile euthanasia clinics. (As Paul Appelbaum writes in an accompanying editorial [preview available here], “One might wonder whether a clinic intended to make assisted death more available will have a lower threshold for approving requests.”) In 16 patient cases, three independent physician reviewers could not agree among themselves as to whether the patient was making a competent request, or whether there was treatment that offered some prospect of improvement.

The description of some of the patients is compelling. The study reports that a “woman in her 70s without health problems … and her husband had decided some years before that they would not live without each other. She experienced life without her husband, who had died 1 year earlier, as a ‘living hell’ and ‘meaningless.’ A consultant reported that this woman ‘did not feel depressed at all. She ate, drank, and slept well. She followed the news and undertook activities.’ ” About patients who reported social isolation or loneliness: ” ‘The patient indicated that she had had a life without love and therefore had no right to exist’ . . .  and ‘The patient was an utterly lonely man whose life had been a failure.’ ” A Dutch regional euthanasia review committee found one case that did not meet due care criteria: “. . .a woman … in her 80s with chronic depression who sought help from the End-of-Life Clinic. The clinic physician met with her 2 times (the first time was 3 weeks before her death), and the patient was not alone on both occasions, with family members present. The physician was not a psychiatrist, did not consult psychiatrists, was unaware of the Dutch Psychiatric Association Guidelines, and yet ‘had not a single doubt’ about the patient’s prognosis.”

These stories are tragedies. I do not deny that the patients in this study were truly suffering. But is EAS really an appropriate way to treat the suffering, by killing the sufferer? If someone fails in an “illegal” suicide attempt, can they just go to the doctor and have it done legally? Is EAS to be the new solution for loneliness, social isolation, and grief? Is it not a slippery slope to go from “Doctors must not kill,” to “Doctors can kill in the case of terminal illness,” to “Doctors can kill people who don’t have a terminal illness but just want to be dead”?

The surprisingly small benefit of some very (expensive) Big Ideas

Last week, JAMA published online a Viewpoint provocatively titled, “What Happens When Underperforming Big Ideas in Research Become Entrenched?” The overarching Big Idea to which the article refers is the “narrative positing that a combination of ever-deeper knowledge of subcellular biology, especially genetics, coupled with information technology will lead to transformative improvements in health care and human health.”

The article highlights three technologies that are integral to the Big Idea but that have not lived up to their promise. The first is genetics/genomics; as an example of unfulfilled promise, the authors trenchantly observe, “Sixty years after the discovery of the genetic defect, no targeted therapy has emerged for sickle cell anemia” — one of the simplest genetic diseases, caused by a single gene. The second is stem-cell therapies; the authors point out one analysis of studies of stem cell therapies, in which the supposed effectiveness of the therapy was directly proportional to the number of factual discrepancies in the published study. The third is electronic health records (EHRs), which have cost billions, but have not realized either the improved care and cost savings that were their major selling point.

Despite the lack of evidence of real benefit, these three technologies have received vast amounts of NIH and government monies. The article recommends changes such as the “NIH should fund many more high-risk, unconventional ideas instead of supporting the same familiar highly funded research fronts.” It also calls for accountability for funded studies to show real benefit.

The article’s title asks what happens when underperforming big ideas become entrenched — vast amounts of money and energy are wasted — and suggests solutions. But the article does not address why those Big Ideas have become entrenched in the face of all evidence, and this must be addressed before solutions can work. I do not pretend to have a definitive answer. But I think there is an even Bigger Idea that overlies all of these lesser ideas: the idea that more technology is inherently good, and in higher-tech medicine will be our salvation.

For example, look at those things that have been shown to make “transformative improvements” in mortality, morbidity, and life expectancy: Quitting smoking. Getting off the couch and doing a bit of exercise. Eating your fruits and veggies. Getting immunized.

Now, which sounds more exciting for research funding: stem cells that we confidently assert can cure Parkinson’s even though we can’t quite prove but it’s pretty obvious that they should, or finding ways to get more grocery stores into poor neighborhoods whose most affordable food source has golden arches in front of it?