End-of-Life for a Major Hospice?

San Diego Hospice may not make it.

That’s the news out here for an organization that is described as “iconic in the hospice world.”  Last November, a Medicare audit concluded that the government had been overcharged—a lot—by San Diego Hospice.  Apparently the problem was filing claims for people who weren’t quite sick enough—expected to die within 6 months—to require hospice care by the Medicare reimbursement rules.  And, sometimes, people get a bit better, so they outlive expectations and aren’t supposed to qualify for continued Medicare reimbursement, but the hospice continued to file claims.

The immediate repercussions have been catastrophic—a Chapter 11 bankruptcy filing, a 30% shortfall of operating expenses, layoffs of about a third of employees, with more likely on the way, and a reduction in inpatient hospice census from 1000 to 450, so the local paper reports.  The CEO says they may not “have a viable organization moving forward.”  How much does Medicare think it should be refunded?  Try a number north of a million dollars—perhaps well north of that.  At least, that is the worry.  Just how much money we are talking about may not be clear to S.D. Hospice—and if so, that may be part of the problem.

The publicly-available information is still incomplete.  I have not seen allegations or speculations about poor management or fraud, and I certainly am in no position to speculate on the details of the case.  My first reaction was to think that an organization pressured by tight reimbursement rules got out “over its skis,” as it were, trying to get paid as much as legitimately possible, and in the process made some mistakes.  I don’t know.

There will still be hospice service available in San Diego County.  Competitors are emerging.  But I hope this will not mean that medically-appropriate palliative care will get too squeezed by payment rules—indeed, at a time when the merits of good routine palliative care is being more prominently discussed, at least in the oncology publications I try to keep up with.  And I guess it means that even for non-profits, money matters, and “good business management” is not a dirty word.

A story to be followed…

Conscience, Data, and the Burden of Proof

Dr. Susan Haack’s recent posts on conscience, and the ongoing struggle over the HHS regulations on mandatory insurance coverage for contraception under the Affordable Care Act, demand more careful further reflections than will fit in a blog post, but I will dare to stick a toe in nonetheless.

In The Line Through the Heart: Natural Law as Fact, Theory, and Sign of Contradiction, J. Budziszewski argues (see pp 8-15, for example) that “deep conscience,” which is “rooted in the constitution” of all humans, is a cardinal indicator of the existence of a natural moral law.  Deep conscience “remembers” general moral norms (including, he argues, the Decalogue).  I’d take this to be Dr. Haack’s “antecedent” function of conscience.  Budziszewski then distinguishes three “modes” of conscience:  cautionary, accusatory, and (for lack of a single term) confession/reconciliation-seeking—the “consequent” functions Dr. Haack mentions.  He would certainly agree with Dr. Haack (as do I) that conscience points to a transcendent authority.

Presumably (me talking now, not Budziszewski), we form correct moral convictions by agreeing with deep conscience about moral truth.  However we arrive at those convictions, we can argue that they too have “antecedent” functions in that they are, if properly understood, sufficient to motivate ethical behavior.  (I just glossed over a major discussion in ethical philosophy that I ask the reader to accept for the sake of argument here.)  Convictions do not, however, produce a sense of guilt, accountability, or of a need for reconciliation.   Conscience does that.   Whether we recognize it or not, conscience is witnessing to our accountability before God.  People who deny God’s existence, however—and who may well also interpret “guilt” to mean a response to bad-faith intimidation by the organized church—can still coherently claim, it seems to me, to act out of conviction with accountability to the community, as long as the standard is some sort of community-recognized norm.  In a pluralistic society, one can appeal to positive law or what we can agree on; or, alternatively, one can appeal to the shared understanding of what it is to be an autonomous moral agent (as I take the German philosopher Jürgen Habermas to do).  Just don’t plead metaphysics.  But the appeal to convictions is not ripped from its community connections—it depends on them, just in a different, but critically different, way.

And that, of course, is the problem.  People like me are making a metaphysical argument (actually, I want to argue for a form of natural law) in a positive law world.  Some of the “positive lawyers” claim that their convictions are objective, not relativistic, because they are available to observation, as in the natural sciences, so we can agree on them, revising our understanding as we get new information.  We are left with a sort of “naturalist’s natural law.” I think that is irredeemably relativistic, in the end—if God is dead, nothing is out of the question.   I understand Budziszewski to agree.  He criticizes the “positive/natural lawyers,” if you will, of pursuing a “second-tablet project”—that is, isolating the “second [stone] tablet” of the Decalogue (Commandments 5-10) from the more explicitly God-directed first 4 commandments of the “first tablet.”

So what?  First, I would submit that the “conscience/convictions” argument doesn’t help all that much in cases like the HHS mandate.  The issue is how much room to give to particular metaphysical stances—the public/private square problem.  Pluralistic norms vs religious freedom is still the battle.  And it will not do to say that profit-seeking makes the moral application of metaphysical commitments illegitimate.  To put the fine point on it, Hobby Lobby’s owners ought to be accorded the same freedom of conscience as are the Catholic Church, or a church-run hospital, or Wheaton College (for example).  I worry, perhaps too much, that bioethicists in particular worship at the altar of non-profit status in ways that risk serious mistakes.

Second (and cf. the recent post by Dr. Joe Gibes), statements like “[The] lack of any substantial evidence for post-fertilization effects [of emergency contraceptives] may significantly weaken conscience claims, and may militate against refusals to dispense or to refer,” [Lewis and Sullivan, Ethics & Medicine 28:113-120, 2012] will not do.  Failure to prove is not disproof.  Absent definitive data, prohibition of emergency contraceptives may be weakened.  But without definitive data—which may not be accessible by ethical experiments—sufficient to free the conscience of concerns, conscience claims of someone with a reasonable doubt about what the data mean ought to be vigorously defended, even against a strong majority consensus.   We should not let a prevailing tide of naturalistic, “data-driven” ethics confuse our use of the data in service of true moral precepts.

More on “Shared Decision Making”

Back on November 27, I posted on shared decision making, or SDM for short, and opined that in broad brush, this seems like a mom-and-apple pie initiative, with the goal of encouraging better communication, informed by better data more clearly communicated, about an individual’s medical decisions.  Central to that effort is the desirability for tools—written, audiovisual, and the like—that support the decision by making complex medical matters accessible to the average person, who is likely not to be sophisticated about medical or scientific matters.

Now, in a recent “Perspectives” article in the New England Journal of Medicine, Emily Oshima Lee and Ezekiel Emanuel urge more formal efforts to develop, certify in some meaningful sense, and use these decision-support tools.  The discussion strikes me as similar to a long-standing parallel concern about how to develop better consent forms for human subject research.

The kicker is that the authors urge a strong active stance by government to mandate the use of such tools.  This would serve three goals:  “promote an ideal approach to physician-patient decision making, improve the quality of medical decisions, and reduce costs.”

Although the authors of the article seem clearly to endorse a strong physician-patient relationship, with clear communication and decisions aligned with the patient’s values, the assumption is that in the preponderance of cases involving aggressive or costly care, or difficult decisions, the cheaper course of action will also be the medically appropriate course and the one that patients will prefer.  That may often be the case (and they cite reports from groups like the Kaiser Foundation to that effect), but when the patient prefers the more costly approach, there could be a conflict, to say the least.

The government would approve the tools, and, in order to ensure not only their use but the chance to collect data about the effect of using them, would demand they be used in Medicare, on pain of reduced reimbursement along the scale currently imposed on hospitals if they have to re-admit too many patients too soon after discharging them.  The CMS, the agency that administers Medicare, has the legal authority to proceed, that authority having been granted in the Affordable Care Act.  All they have to do is write the regulations, and put them into effect after the legally required advance notice (with open comment period) to the public.  CMS would mandate the use of the tools, not specific decisions about care—at least, they would not necessarily mandate specific decisions, not initially in any event.

Over at his “Human Exceptionalism” blog, Wesley J. Smith worries that this constitutes “the bureaucrat looking over your doctor’s shoulder.”  On one level, I’m not so worried—in my experience, the government is generally an accurate source of summary medical information, as on the NIH websites, for example.  Further, I bet the authors would insist that they do not mean to override individual decisions by a patient and his or her doctor.  It’s an open question how much the decision-support tools that eventually are derived will be written to push decisions one way or another.  In its human subject protection rules, the government is quite concerned, from at least the Belmont Report since, to guard individual safety and choice, so I am loathe to jump to conclusions here.

 

On another level, the goals do not exactly align with what I understood SDM to entail when I wrote about it before.  I thought that we were talking about helping a patient understand choices and clarify his or her values in conversation with the doctor, to support as informed a choice as possible—realizing that fully informed consent remains an elusive goal.  I didn’t think cost control was part of the deal.  While it is important to control costs, and it’s important that doctors not practice ineffective medicine, especially when to do so is expensive, cost control per se seems to me outside the boundaries of what I’d consider SDM to entail.

Further, I think we encounter again the tacit assumption that “data” will usually underwrite unambiguous, general rules that apply to all, or nearly all, medical decisions of a given kind and that are unencumbered by scientific controversy.  Regular readers of my posts will recall that I am suspicious of that assumption.  Add to that an assumption that government officials are especially if not uniquely equipped to create the decision-support tools, analogous to the HHS’s recent suggestion that it develop a single, national informed consent form for use in all U.S. clinical trials, a suggestion that I understand is being questioned by significant parts of the clinical research community.

Were this approach to SDM being taken by the medical insurance industry, we’d rightly be concerned that profit maximization was the goal.  But if the government—which pays roughly half of all health care costs in the country, and whose lead on payments is often followed by the private sector—is driving the process, should we be more confident that it has the patient’s interests at heart?  When does the government move from being a facilitator to a driver of care?  And should we really care?

These questions may be moot.  This interpretation of SDM is empowered in law and is probably coming.  Perhaps it would be a development of a more privately-driven approach, as well.  It seems like large organizations and rule-making regimes (I choose this language rather than the ill-suited term “system”) are engulfing more physicians’ regulated participation through mechanisms like direct employment, large contracts, etc, so this all may be the tide of history at work.  But we—patients and physicians—may need to read the print—which hopefully will not be too fine—carefully.

A Couple of Other Bioethics Blogs Worth Checking Out

“Merry Christmas to all, and to all a good night….”

I am mailing it in on the holiday.  To do so, I thought I’d encourage readers of this blog to check out at least two other bioethics blogs that may not always be linked in the usual places.

One is Wesley Smith’s “Human Exceptionalism” blog at National Review Online.  Posts are reasonably frequent (although none in December 2012), with an emphasis on human dignity concerns (end-of-life, distinguishing human and animal moral status), biotechnology and risks of commoditizing human life, and the implications of the Patient Protection and Affordable Care Act (aka “Obamacare”).  Conservative, both socially and politically, as I take conservatism generally to be understood in today’s America.

The other is the “Over 65 Blog” at the Hastings Center website.  Organized by Daniel Callahan and colleagues, this blog focuses on reflections by senior citizens on health care, health policy, and generational issues raised by those and by the aging of our population generally.  The five stated goals are “a stronger role for seniors, self-determination, more care/less technology, confronting the cost problem, and the economic and family needs of the over-65 generation.”  The general perspective is more progressive or at least center-left.  Last week brought a really interesting post from Alicia Munnell, a management professor at Boston College, refuting the idea that older people working longer will mean taking jobs from the young.

I think both are thoughtful and authoritative, and welcome respites from the talking-point fiascos of broadcast journalism.

On rationing health care

The dollars, whether public or private, that can be spent on health care  are finite.

The demand for health care, however, especially given multiplying technologies and escalating costs, is seemingly infinite. There is no way that any insurance company, country, or system can provide for all of its patients all that medicine has to offer. Thus, by definition, some type of rationing of health care must occur. (There, I said it; burn me at the stake as a heretic.)

Thus, by definition, some type of rationing of health care is occurring. Right now. Right here in our country.

The specter of rationed care has stopped many reform schemes in their tracks. Some even defend our current system against would-be reformers by pointing out that, “At least we do not ration care.” However, rationing does not have to be planned and rational to be rationing. (Irrational rationing? How’s that for an oxymoron?) As one Brit who lives under a system of rationed care asks, “How can a system which excludes [millions of] Americans from any guaranteed health provisions, be described as anything but a rationed system?” Our current model rations care using the blunt instrument of who can afford to see the doctor. In other words, in a typical system of rationing, all people are included but certain services are excluded. In our case, all services are included but certain people are excluded.

Most agree that this state of affairs is not a good thing and have proposed various ways to address it. Unfortunately, it has become a political power issue. Too often in the acrimonious debates of the last several years, lawmakers from both parties seem more intent on seeking what’s best for their party rather than what’s best for the people of the nation. And since nobody wins votes by promising to ration care, both sides deny that their reform plans ration care, and come up with schemes that studiously avoid even the appearance of rationing.

One scheme of reform, “Obamacare,” seems to have become the law of the land. Whatever strengths and weaknesses it has, it still avoids confronting this necessity of rationing care. Obamacare  will certainly go through many revisions as it is implemented; some hope that it will be repealed. Whichever happens, whichever reform plan is ultimately realized, it will be a much better plan if it explicitly addresses the exigency of rationing. That way, rationing can be dealt with in a rational way, rather than as the elephant in the room that we all try to pretend isn’t there, but that will squash us if we continue to ignore it.

 

(The Brit quote is by Stuart Horner, from his chapter in The Changing Face of Health Care entitled “Conclusion: Change Health Care–A British Point of View,” p. 280)

The Whitewashed Tombs of the Right

“Woe to you, scribes and Pharisees, hypocrites! For you are like whitewashed tombs, which outwardly appear beautiful, but within are full of dead people’s bones and all uncleanness.”– Matthew 23:27

I received several comments on last week’s post about Hubertus Strughold, so I thought I’d follow up with another post.  The fact that Strughold has been well-respected in American medical circles despite his leadership in medical experimentation in Nazi Germany may shed light on deep-seated philosophical problems that undergird America’s healthcare crisis.  It is no secret that the Allies marveled at the technological and scientific capabilities of the Germans as they marched through that country in the final days of World War II.  Though it used the scientists of the Third Reich to the ultimate success of putting a man on the moon, American medicine may also have adopted harmful philosophical ideas that cripple U.S. medicine to this day.  The technological and scientific accomplishments of American medicine may be the whitewash that hides the philosophical problems that are the dead people’s bones that affect patient care and make us incapable of solving systemic healthcare problems.

Dachau, notorious for its human experimentation

Several writers on this blog have commented on the failures of the “business model” of medicine.  Joe Gibes has written several posts on the subject (see his “Black Friday” post), and Steve Phillips has recently mentioned the “manufacturing efficiency” that has been brought to human reproduction.  It is well-known that many Americans sided with the National Socialists in Germany in the 1920s and 30s because they saw them as a bulwark against the tide of communism that seemed to be sweeping over Europe (Russia fell to the Communists in 1917).  In the culture wars in America the last two decades, it appears the right-wing has propelled the “business model” of medicine to the fore as a bulwark against the Left’s move to bring government-run healthcare to America.  It is a classic case of the end justifies the means.  Why Christians allied themselves with the right-wing to form the “Religious Right” in the 1980s I’ll never know.  But it looks like a deal with the Devil.

Professionalism vs. commercialism in medicine (or, Yet another Black Friday special!!!)

Some thoughts on medicine and commercialism on this, the high holy day of the gods of commercialism:

The understanding of medicine as the satisfaction of consumer wants is corrosive to the practice of medicine as a profession.

“The practice of medicine is not a business and can never be one . . . Our fellow creatures cannot be dealt with as a man deals in corn and coal; the human heart by which we live must control our professional relations.” (Sir William Osler, 1903)

A profession involves the freedom if its practitioners from the simple market reduction of the work to that of the tradesman. It is fundamentally an ethical and moral endeavor. It entails independence of judgment, a degree of self-regulation, a covenantal commitment to patients, the bearing of a characteristic set of responsibilities, and adherence to a distinctive ethical code.

*  *  *

From a hypothetical ad in today’s paper:

“Yes, you heard right, it’s our Black Friday special!! Have we in medical practice got a deal for you! Come over to St. Exorbitant’s where today, we’re offering one MRI for the price of two! (Actually, we’ll charge as high a rate as we can and take whatever your insurance company will allow!) Plus, we’ve got all the most-requested procedures of dubious benefit and unnecessary tests for your enjoyment!! (Unnecessary for your care, that is, but they might help finance that new atrium we’re building on to the hospital, which has really helped us attract patients away from our competition!)

“And if you don’t like our Hippocratic™ – brand selection, come on over to our other showroom, where you can peruse some of our less-traditional items! So, you’re not interested in our time-honored offerings of compassion, presence, and comfort? Well, we have a special discount today on Physican-Assisted Suicide (at such a bargain, too — at least, for our medical system which can finally stop paying for all those pharmaceuticals you’re taking!)! Looking for the perfect child? Sorry, we don’t have that yet, but we can test the one you’re carrying to see if she meets your specifications and tolerances! Now how much would you pay? But wait, there’s more! Our technicians can abort, ah, that is, terminate the child you’re carrying if we find something wrong, or for any other reason, or for no reason at all! We’re eager to serve — YOU! Here, the patient is King and Queen! We will do anything — anything — within our power (and your ability to pay) that you want, and if it isn’t within our power yet, don’t worry, we’re experimenting on your embryos to find ways to serve you better!  (We accept many insurances, cash, and all major credit cards!)”

 

Oh, wait — you say you can’t pay? No insurance? Well, well, funny how those market forces work, isn’t it? I’m sorry, we won’t be able to help you today. Why don’t you try the internet? I hear there’s very good care to be had there!

 

The New Sabbath: The Preaching of the Word and the Healing of the Sick

Citing our rat-race lifestyle and dependence on technological gadgets, many Christian commentators have written about our need for a Sabbath.  Many talk of a “Sabbath” as abstinence from anything for any period time while others consider the need to take a day off, though it might not be Sunday.  I think there are a number of reasons to make the first day of the week, when we commemorate the Resurrection, a time of not only worship and rest but also fellowship with those who are sick.

Luke chapter 9, for instance, shows how Jesus’s ministry coupled preaching with healing.  It is fitting that as we set aside the Lord’s Day to hear the preaching of the Word, alongside the other aspects of worship such as the celebration of the sacraments, we should dedicate the rest of the day to fellowship with others, particular those who are in need.  A good friend of mine related the story of how his friend’s church had a list of people to bring food ready within a day when she had cancer.  Too often we think of “home visits” and hospital visitation as the job of professional clergy.  However, using the Sabbath to extend the body of Christ into the homes and rooms of those who are ill is the role of every Christian.  I’m sure none of the pastors of our churches would mind if we asked for the names of those in the hospital.  Some churches print such information in the weekly bulletin.

Yes, Sunday afternoons are a good time for a nap, but I think our Lord’s Day could be richer if we spent time in fellowship with others, especially those who are ill.  As Thanksgiving approaches, I remember fondly my front-yard football games with my cousins at my grandparents’ house after a turkey meal.  That’s the spirit of the Sabbath: a time of rejuvenation for not only the mind and body but also the soul.  I also think those who are sick and injured are happy to have someone take them outside, too, even it’s not to throw around the pigskin.  I’m always disappointed when hospitals do not take the opportunity to provide at least an outdoor courtyard for patients to sit with their friends and family.  For instance, I visited a hospital that was just a quarter mile down the street from a nice, municipal park several miles in length (and an adjacent lot available no less).  When it’s a hot summer day in Texas, it’s too far to walk with someone who is ill.  Just a little more thoughtfulness and a little better planning and the hospital really could have put something nice together for its patients.

Now if you’ll excuse me … I have two loved ones to see in the hospital.

 

Rationing end-of-life care

The NPR program Intelligence Squared recently held a debate on the proposition to “ration end-of-life care.” Arthur Kellermann and Peter Singer argued for the proposition and
Ken Connor and Sally Pipes argued against the proposition. What became clear very early in the debate was that “should we ration end-of-life care?” was not the right question. All the debaters agreed that in one way or another all health care including end-of-life care is rationed. In the present system on the US care is rationed by some not being uninsured and not able to afford care. There is rationing done by HMOs and other insurance companies as well as governmental agencies. It is sometimes rationed by hospital and ICU beds being full and those already being treated taking precedence over those coming in needing care.

Since a certain degree of rationing of care is inevitable the participants in the debate were actually addressing something different than the original question. What was interesting was that the questions they were addressing were not the same. Those who took the position that we should ration end-of-life care were addressing the question “should a person at the end of life be entitled to any medical treatment that the person requests no matter how very expensive or how little expected benefit there is from the treatment?” They said the answer was no. That seems relatively obvious. There are some treatments that are very expensive and which are likely to be of only marginal benefit which the patient is unable to pay and it does not seem reasonable for society to be required to provide them. If that is what is meant by rationing end-of life care, then the answer is that it should be rationed.

Those who took the position that end-of –life care should not be rationed were actually addressing the question “should the federal government ration end-of-life care in the way that it is anticipated might be done under the provisions of President Obama’s Affordable Care Act?” Their answer to that was no with reasons ranging from an emphasis on the importance of individual decision making about medical treatment, to the wrongness of being denied reasonably effective care by the government due to age or incapacity, and faith in a free market to be able to manage health care costs better than centralized government. They were clearly talking about different things.

It seems clear to me that rationing of end-of-life care and other health care is happening now and is inevitable. We cannot as a society afford to do everything that is possible. The question is “who should make the decisions and how?” Much of high cost ineffective care can be avoided if patients, their families and physicians are well informed and directly address the issues of effectiveness and cost as well as limitations on the extent of desired treatment before situations get out of hand. We need to address our culture’s values and encourage people to think about and discuss end-of-life care before it happens. Physicians play a significant role in this, but the church can play an import role as well by encouraging a Christian understanding of dying well and preparation for death rather than denial of it. When that is not effective we need societal policy that there are some very expensive and ineffective treatments that we as a society will not pay for.

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?