The unbefriended and their doctors

There is a rapidly growing class of uniquely vulnerable patients showing up on our hospital doorsteps. Referred to as the unbefriended, or more prosaically as the unrepresented, these are patients who have no capacity to make medical decisions themselves, have no advance directives, and have no family or friends or anybody else on the face of the earth to speak for them. It is as if they dropped out of the sky, and we cannot find anyone with enough of a human connection to them to help us know what they think or desire.

There is great tragedy in reaching a point in life where there is seemingly nobody who knows you or cares about you. The tragedy is often felt keenly by those who provide medical care to such patients. If a patient cannot make decisions for themselves, and if they have no advance directive, and if there is nobody who knows them to make surrogate judgments regarding their care, we default to the “best interest” standard for making decisions: What course of action is in the best interest of this patient? Which leads to the next question, Who decides what is in the patient’s best interest? One can defer to the courts and pursue legal guardianship. However, in my state at least, such a process is neither timely nor inexpensive, and the chances are slim that a public guardian with an already impossible caseload will take the time to get to know the particulars of a patient’s condition in order to make a reasoned decision.

If not a legal guardian, then it is the care team that must decide: in particular, the burden falls to the attending physician. In any situation, it can be difficult to do things to patients without their explicit consent. In situations where withdrawing life-sustaining treatment is on the table, it becomes especially difficult. Even in cases where it is clear that withdrawing life-sustaining treatment is in the patient’s best interest — when the burdens of treatments far outweigh any potential benefit, when the treatments don’t actually treat anything — a thoughtful, well-meaning physician might torture herself with doubts: Are we doing this because the patient is seen as a burden to the system? Are we taking a step down a slippery slope?

Nobody should feel as though they have to make such a decision alone. Other care team members can contribute to the decision-making process, of course. Ethics committees can help to support the physician on an ad hoc basis. But the scope of this problem will only grow as the population ages. In order to protect these extremely vulnerable patients, resources should be made available to provide easily-accessible, compassionate, wise third-party decision-makers who will protect both patient and physician. In a few places accommodations have been made on an individual hospital or county-wide basis. However it is done, action should be taken to ensure that these, perhaps some of the most vulnerable patients outside of the womb, are treated within the medical milieu as people with worth and dignity, and that those taking care of them are not carrying momentous decision-making burdens alone.

Undermining the USPSTF: The most important stakeholders are the patients

A strange “health care” drama plays out daily in our clinics and hospitals. A healthy person has a medical test done (even though he or she is healthy): a blood test, a chest x-ray or mammogram, maybe an ultrasound of some body part. The test comes back abnormal. The patient (for she has now gone from being a healthy person to being a patient) is struck with worry, and undergoes a further round of testing to determine whether the initial, “screening” test was accurate. This more invasive, risky definitive testing causes the patient pain, complications, infections, further procedures to fix the complications. But the testing shows that the original screening test was wrong, and the patient is relieved of their worry and overcome with a sense of gratitude: “Yes, the follow-up surgery was painful, but at least it’s not cancer.” However, notice what caused the worry in the first place: not some symptom that they were experiencing, but a test that was performed on a healthy person. What a marvelous bit of sorcery: we take a happy patient, create unnecessary worry, then win their undying gratitude by performing risk-laden procedures on them to remove their worry!

There is something very intuitive about the concept that detecting a disease (especially cancer) early leads to better outcomes, that screening tests are inherently good. Yet when one studies the actual outcomes of implementing mass screening programs in a population of people who have no signs or symptoms of a particular disease, one finds to one’s surprise that, not infrequently, more people are harmed by our screening test than are helped (See: PSA testing, carotid ultrasounds, annual stress tests, etc). This harm may take many forms: worry, invasive procedures with all the risk they bring, radiation exposure, disfiguring treatments, stroke, even death. Yet there is no shortage of promoters of various tests that capitalize on our intuition that “More testing is better.”

In steps the United States Preventive Services Task Force (or USPSTF), a group of experts in preventive medicine and primary care (since it is mostly primary care providers who order screening tests). Their task is to examine the scientific evidence of the potential risks and harms of preventive strategies like screening tests, and to make recommendations based solely on that evidence. They strive to use the best scientific data available to benefit the most people possible. Even when their recommendations are unpopular (because they go against our intuition that more screening is better), they have a large effect on what tests are performed — and what tests insurance will pay for.

This week the USPSTF recommended against screening for thyroid cancer in people without symptoms. The data show that screening has found lots of thyroid cancer that never would have been found otherwise. The data also show that screening has not produced a reduction in death from thyroid cancer or an increase in quality of life. What it has produced is an increase in harms, such as injuries to vital nerves from the increase in thyroid surgery. Who knew?

Now there is legislation pending in Congress proposing that “stakeholders” — that is, specialists and industry representatives — be included in the membership of the USPSTF. This is a very bad idea. Consider: What do specialists like thyroid surgeons (who are not experts in screening for thyroid cancer; rather, their livelihood is tied to operating for it) or drug and device manufacturers (who sell the tests and ultrasound machines used to screen for thyroid cancer) add to the USPSTF’s process?  The main thing “stakeholders” (that is, people with a financial interest in seeing the test done) add is a conflict of interest. Whatever difference such “stakeholders” make would be tilted to the advantage of the few who stand to profit from the screening, and to the detriment of the many in the population who would be harmed from the screening. The USPSTF’s work must not be transformed from a transparent procedure that seeks to minimize harm into a get-rich-quick scheme.

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.

A Conflict of Interest is NOT an Ambiguity

Oregon Senate Bill 494 has been described as a “euthanasia bill” that is “intentionally ambiguous,” and as a piece of legislation that would “allow the starving and dehydrating of patients who suffer from dementia or mental illness.”

What has received less press is the composition of the 13-member committee who would be perpetually in charge of advance directive forms in the state, with no oversight by the legislature. Who would those persons be? According to the bill, the 13-member “Advance Directive Rules Adoption Committee” would include

  • The Long Term Care Ombudsman or that individual’s designee
  • 12 members appointed by the Governor
    1. one representative of primary health care providers
    2. one who represents hospitals
    3. one clinical ethicist affiliated with a health care facility
    4. two health care providers with palliative care or hospice expertise
    5. one who represents persons with disabilities
    6. one who represents “consumers of health care services”
    7. one who represents “the long term care community”
    8. one who has expertise in “advising or assisting consumers with end-of-life decisions”
    9. three members from among those proposed by the Oregon State Bar:
      • an expert in elder law
      • an expert in estate planning
      • an expert in health law

Why is the State of Oregon so interested in making sure their appointees are in charge of advance directives?  Is it because the state is so concerned about the health of its citizens?  Hardly, when those citizens in the health care system are described not as patients, but consumers.  Stacking the committee with lawyers who are experts in estate planning and elder and health law seems to assure the state that they will get their pound of flesh.  The State is aware of this:  deceased consumers no longer need their money or their organs.  The conflict of interest inherent in this scheme is not ambiguous.

 

— D. Joy Riley, M.D., M.A., is executive director of The Tennessee Center for Bioethics & Culture.

For Want of a Letter…

If one were seeking to transform our culture, he would aim for approving proclamations from officials to codify his desired belief system. The example that comes easily to mind is the President, which would then mean, of course, the Executive Branch of the federal government. Next, perhaps, would be the judicial system. Even more demonstrative of transformation would be the official policy of the US military, which lives or dies on whether it has a clear-eyed view of the world. Add to that the medical profession, which acts as a “Bureau of Standards” for the physical and psychological states of man. If the topic at hand is the redefining of gender identity, then today we have a fait accompli.

Recently, however, I witnessed a more striking albeit less public marker. At a recent conference I heard someone give a brief testimony of her daughter’s transition from female to male, and in describing her daughter, the speaker used the word, “he.”

What on earth, I thought, could make a mother speak so, a mother who carried the kicking fetus, sonographically identified as female, then birthed the child among witnesses who declared her identity, then nursed, clothed, fed, taught, loved, all with a knowledge of her identity so certain that to question it would have been too ludicrous to even come to mind?

The answer came shortly, as the speaker told of her daughter’s subsequent suicide attempt. The mother’s loss of her child–a story told countless times in print, on stage, and in film, is the greatest of tragedies. So tragic that a mother would give anything to prevent it–her own life, or her own concept of her child’s gender.

The suicidality itself is revealing, in that the rejection of self that finds its ultimate expression in suicide is preceded by the attempt to destroy one’s identity. But don’t wait for the medical profession to explain it. Gender reassignment is made increasingly with little more than a request, as a result of prompt referrals to those quite willing to facilitate the changes. It is a tragedy in itself that the profession abandons difficult inquiry in favor of declaring that the fault lies in organs that can simply be removed.

One writer who grasped the enormity of modern cultural transformation was Whittaker Chambers (1901-1961). Although the enemy he faced was Communism, make no mistake about it–Communism and this transformation of the meaning of gender are but two branches of the same philosophical vine. Chambers’ unique experience and talent made him powerfully insightful and articulate about the state of modern Western civilization. He quoted the German psychiatrist Karl Jaspers (1883-1969): “Quietly, something enormous has happened in the reality of Western man: a destruction of all authority, a radical disillusionment in an over-confident reason, and a dissolution of bonds that makes anything, absolutely anything, seem possible . . . ”

A mother drops a single letter in describing her child. It might as well have been an earthquake. Yet the significance will slip past us, we who are too busy trying to keep our frenzied lives together to recognize the fragmentation of the very cultural foundation upon which we stand. As Chambers said, “I am constantly baffled because so few seem to grasp the enormity of our situation, which is defined by the certainty that there is no way out of it that can possibly be simple, easy, familiar, usual, in terms of anything we have known before. ” Chambers saw us as, “a civilization foredoomed first of all by its reluctance to face the fact that the crisis exists or to face it with the force and clarity necessary to overcome it.” (Witness, p. 155. Regnery Publishing)

And why?

“It is the first century since life began when a decisive part of the most articulate section of mankind has not merely ceased to believe in God, but has deliberately rejected God. And it is the century in which this religious rejection has taken a specifically political form, so that the characteristic experience of the mind in this age is a political experience. At every point, religion and politics interlace, and must do so more acutely as the conflict between the two great camps of men— those who reject and those who worship God— becomes irrepressible. Those camps are not only outside, but also within nations.” (Witness, p. 386)

Man declares himself the Creator. Or perhaps the “Re-creator.” He exercises all political authority to achieve social conquest. But as this case reveals, the transformation of gender identity is far more than the simple exercise of personal liberty. It is the destruction of human identity itself. Small wonder that gender identity transformation too often precedes suicidality. Unless we make a stand, our civilization may be close behind.

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 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?

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?

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.