I am amazed over and over by the term "Death Panel". I was at a cabin for two weeks with no electricity, newspaper, television or radio and I return to cries of "Death Panel" which seems to be a name for visits to a primary care doctor to discuss end of life issues.

I spoke at a church this summer: the title was "End of Life Issues: Death, Dying and Dementia". I specialize in Family Practice; I have delivered babies for 18 years and my oldest patient is 104. I love to work with families in life's transitions: birth, illness, family planning and, yes, death.

Everyone dies. Everyone is born. We have prenatal care. Our nation is in continuous discussion about birth: how to make it safe and a welcome and we talk about bonding and reducing premature births. We try to make the gestation healthy; we take vitamins and exercise and see our doctors regularly.

Why don't we do the same for death?

There is some effort. Hospice is care for the end of life, but to be in hospice, a doctor must say that a person would reasonably be expected to die within six months. Honestly, doctors are not very well trained in this. The truth is that we tend to refer people to hospice within days or a few weeks of death. I was not well trained in approaching the subject of hospice. Some patients see this as a death sentence: the doctor is saying that I WILL die within six months. I now approach it as a challenge for them. "I could refer you to hospice now, because you might die within six months. They will pay for your medicines and you actually do not HAVE to die within six months. If you live for two years once you are referred, they may fire you from hospice." Yes, I have had people who were in hospice and came back out. More than one. And I referred one woman because her cardiologist had said her cancer would kill her and her cancer doctor had said that her heart would kill her and she'd already outlived both their predictions and was complaining about an expensive medicine. I said that since they both had told me she'd be dead over a year ago, I was certainly able to refer her to hospice. She thought about it, accepted and then beat the six months.

I like to discuss end of life issues. It is not easy, but I would much rather have a difficult discussion than the alternative.

A friend brought her mother, in her upper 80s, to see me in clinic. Her mother was already well past the age when she was likely to die of a sudden heart attack. I started talking about strokes and that it takes 2-3 days for the swelling in the brain to go down. We support people and wait to see if they will be able to swallow. If a person does not recover the ability to swallow, I was explaining why they would die.

"I don't want to think about this." she said firmly.

"Well," I said, "You don't have to. BUT, if you do not tell us what you want, you might not be able to talk or communicate. If you can't communicate, your daughter and I will have to make the decisions, and we will err on the side of doing things, treating, rather than not treating. So it is your decision."

She thought about it. "All right. I am willing to talk about it."

She did talk about it and she listened to the information about strokes, heart attacks, and told us that if she were sick she would rather stay in our small town. She did not want to be transferred to a big hospital in the event of a big heart attack or stroke. She wanted to stay in our small hospital, near her family, and use the more limited resources here. She seemed to understand what these were and what we could and couldn't do. Sometimes transfer to a bigger hospital can slow death, but sometimes it is only by hours or days.

She did have a stroke, some months later. She was able to communicate and her swallowing was affected. She indicated clearly that she wanted to go home. She went home and had her children, grandchildren and a great grandchild present to say goodbye. Her family was very sad but also were prepared, I think, and able to care for her at home. I visited the day before she died. It made me think of a Norman Rockwell painting, with the great grandchild playing happily in the room with a big bed and the family gathered around.

Every person's response to the end of life is personal, no two are alike. My job as a family physician includes notifying people when I think the end is nearing; asking for their preferences and trying to help the dying person and their family through this sacred transition as best I can.

If that is what a "Death Panel" is, then I have already been on one.

The Death of Discourse

It strikes me as sad that America seems to have lost the ability to have a rational discussion right at the time we need it the most.  Polarization, distrust and the mendacity of committed ideologues from both sides has crippled our communal thought process and left us at the mercy of partisan politics. We've been inundated with finely honed hyperbole that spins the facts, dodges direct questions and distorts the issues while tugging at our emotions. 

The current push to reform our health care system is a case in point and the specific subject of "Death Panels" is an excellent example of the problem. President Barack Obama has complained repeatedly in recent weeks about the "misinformation" being disseminated about his plan to reform health care.  As one example of this misinformation, President Obama has mocked the notion that death panels are included in the bill as a right-wing scare tactic with no basis in fact. Yet the notion persists that somehow ObamaCare will lead to faceless government bureaucrats having the ability to "pull the plug on grandma." Opponents of the bill have loudly insisted that the so-called "Death Panels" are included in the bill, and that these provisions will lead to intrusive government regulations that may in fact lead to "grandma" being denied life-extending treatment.  

Fact or Fiction?

Is there any basis in fact to this scary scenario?  Is Grandma at risk? Let's see if we can scratch the surface of this complex subject and determine for ourselves if it's just a scare tactic, or something to be concerned about.  

Although the President has not offered his own plan for health care reform, he did bring enormous political pressure to bear in an effort to get the House of Representatives to pass their health care bill, HR 3200, prior to their summer recess.  He also made it clear that he would be happy to sign it into law if given the chance, so one must assume that the America's Affordable Health Choices Act of 2009 aka H.R.3200 is synonymous with ObamaCare as he currently envisions it.  

The subject of death panels is muddled due to the conflation of two different descriptions of what comprises a death panel.  When President Obama refutes the notion of death panels he defines them as the end of life conferences that occur between physicians and their patients in which the specifics of the patient's condition are laid out alongside options for treatment ranging from life-extending therapies to hospice provisions for a comfortable, and usually quick death. Many opponents of the President's health care reform proposals are opposed to the idea that physicians may be motivated by the government health care reforms to steer these end of life discussions toward the options that reduce the cost of end of life treatment. They feel that the only participants in these discussions should be the patient and his doctor, and that the Hippocratic Oath rather than government guidelines should be the ethical basis.  

The opponents of ObamaCare are opposed to the "end of life discussions" version of  death panels, but it's not really their primary concern. Usually the opponents of the proposed health care reforms mean something entirely different when they use the term, "death panel." Their notion of death panels is derived from examples of government run health care in other parts of the world, notably Canada, England and France, which the Obama administration has cited in the past as examples to be emulated.  The government controlled health care systems in these countries have attempted to reign in the growing costs of health care through a variety of care rationing processes that mandate very specific rules about the treatments that are available to patients based on the patient's age and medical condition among other factors.   

So when voices are raised at a town hall meeting in protest of the purported death panels in ObamaCare, and the proponents respond that the end of life discussions are not a threat, the two sides are talking past each other. The ones in the audience shouting are talking about health care rationing, and the ones up on the podium being shouted at are "hearing" and responding to complaints about the end of life care discussions that physicians already have with their patients when the time comes. 

It's a greek tragedy really, both sides have a point, but the amplitude of the discussion and the ignorance surrounding it are like a brick walls of misunderstanding.  One side is furious and afraid, the other side doesn't get what the big problem is.

As in many of these radioactive topics lately, there's a pretty clear and simple shred of truth laying at the bottom of the messy heap, available to anyone willing to dig a little bit. What I mean is that you don't have to try all that hard to see who is factually and rationally correct in this matter.  You can't expect the mainstream media to tell you, but if you got a copy of the Congressional Record and looked up house bill 3200 and read it, you'd either find provisions for Comparative Effectiveness Boards that could potentially influence the kind of health care rationing decisions which the "angry mob" was complaining about, or you wouldn't.  Right?  

Who's right and who is wrong?  

As you'll see below, I'm pretty sure that there's a clear factual answer here. Somebody is more or less right, and somebody else is weaving and dodging. But that's not why I've taken the time to write this.  Whether or not "Death Panels" are part of ObamaCare is one smallish question in a really large subject.  It's one battle in a major culture war, and regardless of the answer, we've got a long road ahead of us. I'm not so much invested in this particular answer as I am in the process of getting to that answer.  We need to relearn the process of getting to the bottom of things like this rather than taking the word of the pundits and partisans on either side of the issue.  

I consider developing an informed opinion on matters like this to be a basic responsibility of citizenship. But from what I can tell it has become somewhat of a lost art amongst the general populace. You may really like President Obama, but you shouldn't take his word on anything this important. You shouldn't just trust him, or Nancy Pelosi, or Harry Reid, or CNN or the New York Times, or the Daily Koz, or Rush Limbaugh, for that matter. You should take the time to find out for yourself, and if I can encourage you to spend a little time taking an objective look at the big questions confronting us, digging through the muck to get to that little shred of truth using facts and reason, then my purpose here has been satisfied.

Does ObamaCare include Death Panels?

The answer is emphatically and demonstrably yes.  The plain truth is that "Death Panels" in the form of government mandated health care rationing of one sort or the other is, almost of necessity, a component of virtually every nationalized health care program, and it will be a part of ObamaCare as currently envisioned. In order to provide coverage for everyone and still keep some check on the cost of the program, health care rationing is inevitable.  It is certainly a component of HR3200, and in much the very worrisome form that the ObamaCare protestors are afraid of. 

Section 123 of HR3200 describes in detail the creation, duties and composition of Health Benefits Advisory Committee.  This appointed body will recommend covered benefits and essential, enhanced, and premium plans, presumably for adoption by private insurance providers as well as any "public option" health care plan provided by the federal government.  As we have already established, some form of health care rationing is inevitable, in both public and private plans, but in a free market, you have the freedom simply pick another provider if you aren't satisfied with the plan that you are on.  The concerns posed by the protestors is that if the federal government restructures American health care, they will lose that option. I think it would be fair to say that this is exactly what the ObamaCare protestors are worried about. 

HR3200 is over 1000 pages long, and I'm not sure how much mind-numbing legalese from HR3200 is appropriate to quote here.  I want to prove that the bill includes this provision, and give you a flavor of how it works without putting you to sleep.  I'll err on the side of brevity and encourage you to go read the bill in you want more of the gory details.  

SEC. 123. HEALTH BENEFITS ADVISORY COMMITTEE.
(a) Establishment-

(1) IN GENERAL- There is established a private-public advisory committee which shall be a panel of medical and other experts to be known as the Health Benefits Advisory Committee to recommend covered benefits and essential, enhanced, and premium plans.

(2) CHAIR- The Surgeon General shall be a member and the chair of the Health Benefits Advisory Committee.

(3) MEMBERSHIP- The Health Benefits Advisory Committee shall be composed of the following members, in addition to the Surgeon General:

(A) 9 members who are not Federal employees or officers and who are appointed by the President.

(B) 9 members who are not Federal employees or officers and who are appointed by the Comptroller General of the United States in a manner similar to the manner in which the Comptroller General appoints members to the Medicare Payment Advisory Commission under section 1805(c) of the Social Security Act.

(C) Such even number of members (not to exceed 8) who are Federal employees and officers, as the President may appoint.

Such initial appointments shall be made not later than 60 days after the date of the enactment of this Act.

(4) TERMS- Each member of the Health Benefits Advisory Committee shall serve a 3-year term on the Committee, except that the terms of the initial members shall be adjusted in order to provide for a staggered term of appointment for all such members.

(5) PARTICIPATION- The membership of the Health Benefits Advisory Committee shall at least reflect providers, consumer representatives, employers, labor, health insurance issuers, experts in health care financing and delivery, experts in racial and ethnic disparities, experts in care for those with disabilities, representatives of relevant governmental agencies. and at least one practicing physician or other health professional and an expert on children's health and shall represent a balance among various sectors of the health care system so that no single sector unduly influences the recommendations of such Committee.

(b) Duties-

(1) RECOMMENDATIONS ON BENEFIT STANDARDS- The Health Benefits Advisory Committee shall recommend to the Secretary of Health and Human Services (in this subtitle referred to as the `Secretary') benefit standards (as defined in paragraph (4)), and periodic updates to such standards. In developing such recommendations, the Committee shall take into account innovation in health care and consider how such standards could reduce health disparities.
<Snip>

If I'm counting right, we are to have a 26 member committee comprised of members who are appointed rather than elected, thus only accountable to whoever appointed them.  The President is entitled to appoint up to 17 of the members, a clear majority of the Committee. The committee is tasked with making recommendations directly to the Secretary of Health and Human Service for inclusion in the Secretary's development of benefit standards regulations, similar to those currently provided for the Medicare program.

Wait a sec, that's a Committee, NOT a Panel

So it is, and if that were the sole tattered shred of truth we had to work with here I'd call this a draw.  That, however, is not the case.  HR 3200, goes the extra mile by mandating the creation of a research body that will make the hard choices of health care rationing under ObamaCare.  The Center for Comparative Effectiveness Research is described in some detail in the house bill, and it is the next brick in the wall that the ObamaCare protestors are so perturbed about.

An excerpt from the text of HR3200 TITLE IV Subtitle A SEC. 1401 Part D describes the creation, composition, duties etc. of  The Center for Comparative Effectiveness Research.

(1) IN GENERAL- The Secretary shall establish within the Agency for Healthcare Research and Quality a Center for Comparative Effectiveness Research (in this section referred to as the Center') to conduct, support, and synthesize research (including research conducted or supported under section 1013 of the Medicare Prescription Drug, Improvement, and Modernization Act of 2003) with respect to the outcomes, effectiveness, and appropriateness of health care services and procedures in order to identify the manner in which diseases, disorders, and other health conditions can most effectively and appropriately be prevented, diagnosed, treated, and managed clinically.

(2) DUTIES- The Center shall--

(A) conduct, support, and synthesize research relevant to the comparative effectiveness of the full spectrum of health care items, services and systems, including pharmaceuticals, medical devices, medical and surgical procedures, and other medical interventions;

(B) conduct and support systematic reviews of clinical research, including original research conducted subsequent to the date of the enactment of this section;

(C) continuously develop rigorous scientific methodologies for conducting comparative effectiveness studies, and use such methodologies appropriately;

(D) submit to the Comparative Effectiveness Research Commission, the Secretary, and Congress appropriate relevant reports described in subsection (d)(2); and

(E) encourage, as appropriate, the development and use of clinical registries and the development of clinical effectiveness research data networks from electronic health records, post marketing drug and medical device surveillance efforts, and other forms of electronic health data.

(3) POWERS-

(A) OBTAINING OFFICIAL DATA- The Center may secure directly from any department or agency of the United States information necessary to enable it to carry out this section. Upon request of the Center, the head of that department or agency shall furnish that information to the Center on an agreed upon schedule.

(B) DATA COLLECTION- In order to carry out its functions, the Center shall--

(i) utilize existing information, both published and unpublished, where possible, collected and assessed either by its own staff or under other arrangements made in accordance with this section,

(ii) carry out, or award grants or contracts for, original research and experimentation, where existing information is inadequate, and

(iii) adopt procedures allowing any interested party to submit information for the use by the Center and Commission under subsection (b) in making reports and recommendations.

(C) ACCESS OF GAO TO INFORMATION- The Comptroller General shall have unrestricted access to all deliberations, records, and nonproprietary data of the Center and Commission under subsection (b), immediately upon request.

(D) PERIODIC AUDIT- The Center and Commission under subsection (b) shall be subject to periodic audit by the Comptroller General.

(b) Oversight by Comparative Effectiveness Research Commission-

(1) IN GENERAL- The Secretary shall establish an independent Comparative Effectiveness Research Commission (in this section referred to as the Commission') to oversee and evaluate the activities carried out by the Center under subsection (a), subject to the authority of the Secretary, to ensure such activities result in highly credible research and information resulting from such research.

(2) DUTIES- The Commission shall--

(A) determine national priorities for research described in subsection (a) and in making such determinations consult with a broad array of public and private stakeholders, including patients and health care providers and payers;

(B) monitor the appropriateness of use of the CERTF described in subsection (g) with respect to the timely production of comparative effectiveness research determined to be a national priority under subparagraph (A);

(C) identify highly credible research methods and standards of evidence for such research to be considered by the Center;

(D) review the methodologies developed by the center under subsection (a)(2)(C);

(E) not later than one year after the date of the enactment of this section, enter into an arrangement under which the Institute of Medicine of the National Academy of Sciences shall conduct an evaluation and report on standards of evidence for such research;

(F) support forums to increase stakeholder awareness and permit stakeholder feedback on the efforts of the Center to advance methods and standards that promote highly credible research;

(G) make recommendations for policies that would allow for public access of data produced under this section, in accordance with appropriate privacy and proprietary practices, while ensuring that the information produced through such data is timely and credible;

(H) appoint a clinical perspective advisory panel for each research priority determined under subparagraph (A), which shall consult with patients and advise the Center on research questions, methods, and evidence gaps in terms of clinical outcomes for the specific research inquiry to be examined with respect to such priority to ensure that the information produced from such research is clinically relevant to decisions made by clinicians and patients at the point of care;

(I) make recommendations for the priority for periodic reviews of previous comparative effectiveness research and studies conducted by the Center under subsection (a);

(J) routinely review processes of the Center with respect to such research to confirm that the information produced by such research is objective, credible, consistent with standards of evidence established under this section, and developed through a transparent process that includes consultations with appropriate stakeholders; and

(K) make recommendations to the center for the broad dissemination of the findings of research conducted and supported under this section that enables clinicians, patients, consumers, and payers to make more informed health care decisions that improve quality and value.

To an ObamaCare health care protester that sounds a lot like a, "death panel."  

As icing on the cake, we also get some privacy concerns, "The Center may secure directly from any department or agency of the United States information necessary to enable it to carry out this section." I guess that would include the IRS, Social Security, as well as whatever bureaucracy ends up controlling the so-called Public Option federal program. The funding section explains that funding for the  "shall be available, without the need for further appropriations and without fiscal year limitation," which I believe means that its monies come from the general fund and would be immune from cuts by future administrations. I think they call that an unfunded mandate.

What's so scary about Comparative Effectiveness Research anyway?

Well, okay, we can see the death panels, but so what?  Maybe Comparative Effectiveness is a good first step in controlling the rapidly rising costs of health care.  Comparative Effectiveness doesn't sound so scary, maybe it's a good idea. Who is doing the comparing anyway, and what criteria are they likely to use?

If anyone can be assumed to be guiding the White House's health initiative in this area it is likely Dr. Ezekiel Emanuel.  Dr. Emanuel, the brother of White House Chief of Staff, Rahm Emanuel,  has been appointed by President Obama as health-policy adviser at the Office of Management and Budget and as a member of the Federal Council on Comparative Effectiveness Research. Dr. Emanuel is a bioethicist with well developed ideas on how medical care should be distributed to best achieve social justice. It's fair to say that he has the ear of the President and that his views on the subject are reflected in the current ObamaCare proposals. 

Dr. Emanuel has written extensively about health care rationing including "Principles for Allocation of Scarce Medical Interventions" published in The Lancet, January 31, 2009. In that article, Dr. Emanuel describes a concept, currently in vogue among health care reformists, that redefines a physician’s duty, as working for the greater good of society rather than focusing only on the patient’s needs. The Lancet article also includes a figure jokingly referred to in the [Wall Street Journal as "The Reaper Curve" that illustrates how he believes health care resources should be distributed based on the age of the patient.  The bulk of our health care monies, according the Dr. Emanuel, will be spent on those between 20 and 40 years old, with a sharp drop off of resources spent on those above 50. Surprisingly, the very young are also targeted for severe rationing, with the "percentage likelihood of receiving an intervention" i.e. getting treatment, dropping off sharply for those under ten years old. 

Dr. Emanuel has said that reforming health care will not be "pain free," and he clearly feels that he is both qualified and compelled to pave the way. In the Feb. 27, 2008, issue of the Journal of the American Medical Association (JAMA): Emanuel chastises past efforts at health care reform, "Vague promises of savings from cutting waste, enhancing prevention and wellness, installing electronic medical records and improving quality of care are merely 'lipstick' cost control, more for show and public relations than for true change." 

In the June 18, 2008, issue of JAMA, Dr. Emanuel takes on Doctors and the Hippocratic Oath they adhere to, complaining that "Medical school education and post graduate education emphasize thoroughness," and that "the Hippocratic Oath's admonition to 'use my power to help the sick to the best of my ability and judgment' as an imperative to do everything for the patient regardless of cost or effect on others."  While some might see that as a comforting and well established principle, Emanuel argues that real health care reform must include a "redefining doctors' ethical obligations." The fact that American doctors currently put their patient first regardless of cost, is seen by Emanuel as "an intractable problem." Of course to those protesting ObamaCare, this level of personal concern and ethical commitment to their best interests is of the utmost concern.  

Take home message

I promised you a clear outcome from this discussion, a winner and a loser.  I also said I hoped to demonstrate that it wasn't too hard to dig through the pile of muck that our dysfunctional national discourse has thus far provided and get to the shredded remnants of objective truth underlying.  To distill the essence of this down to a set of readily testable stipulations consider the following:

Health care protestors are concerned that ObamaCare, in the specific form of HR 3200 will include so-called death panels comprised of government-appointed and controlled boards of decision makers who will establish and administer care rationing policies influencing who receives care and how much and what type of care received.

President Obama and his supporters have disingenuously interpreted the protestor's complaint to reference solely end of life care discussions and they have insisted that health care reform will not influence these discussions. That isn't so much a response to the complaint as an attempt at redirection from a subject they don't want to discuss..

HR 3200 does in fact include extensive provisions for boards and commissions who will play a role in creating guidelines, policies and mandates regarding health care rationing.  The President has appointed an outspoken proponent of health care rationing to several important advisory positions and he is clearly in agreement on the overall need for government-mandated health care rationing as a part of any reform plan. 

To the extent that President Obama's health care ideas are influenced by his chief advisor, Ezekiel Emanuel, there may be good cause for concern.  His theories regarding the social justice implications in health care are very controversial, even among the medical community.  His attacks on the Hippocratic Oath break with over two thousand years of tradition and lay far outside the mainstream. In the New England Journal of Medicine, Sept. 19, 2002, Emanuel writes, "In the next decade every country will face very hard choices about how to allocate scarce medical resources." In this he is likely correct, but one might be forgiven for hoping that Ezekiel Emanuel and Barack Obama are not the ones making those hard choices. 

Let me end with a quote from two practicing physicians on the staff of Beth Israel Deaconess Medical Center in Boston and on the faculty of Harvard Medical School.

The devil is in the regulations. Federal legislation is written with general principles and imperatives. The current House bill H.R. 3200 in title IV, part D has very broad language about identifying and implementing best practices in the delivery of health care. It rightly sets initial priorities around measures to protect patient safety. But the bill does not set limits on what "best practices" federal officials can implement. If it becomes law, bureaucrats could well write regulations mandating treatment measures that violate patient autonomy. - Jerome Groopman & Pamela Hartzband

===================&===================

Sources:
1  To read HR3200 online, go to the following site and search for the text of "3200":  http://thomas.loc.gov/home/bills_res.html
2  Obama's Health Rationer-in-Chief By BETSY MCCAUGHEY, WSJ AUGUST 27, 2009: http://online.wsj.com/article/SB10001424052970203706604574374463280098676.html
3  Groopman and Hartzband, Sorting Fact From Fiction on Health Care: http://online.wsj.com/article/SB10001424052970203706604574378542143891778.html

Addendum

This writeup has produced a nice stream of comments, both agreeing and disagreeing with my essay. I'd like to thank those who commented for providing me with their insights.

Contrary to the impression I may have given above, I'm still undecided about the exact role that government should play in health care. I've had the same doctor for over a decade now. She knows me well and I trust her. I know that she'd go to bat for me for any treatment that she believed I needed. I also know she'd try to talk me out of any treatment that she didn't think made sense for me. I consider my own health care situation is excellent and recent polls show that over 90% of Americans agree.

The quote from Groopman and Hartzband (cited above) sums things up pretty well.

"The World Health Organization ranks the U.S. No. 1 among all countries in "responsiveness." Responsiveness has two components: respect for persons (including dignity, confidentiality and autonomy of individuals and families to make decisions about their own care), and client orientation (including prompt attention, access to social support networks during care, quality of basic amenities and choice of provider). This is what Americans rightly understand as quality care and worry will be lost in the upheaval of reform."

That said, my primary concern is the intellectual dishonesty with which President Obama and the Democrats have been pushing their agenda forward on health care. We're faced with very serious problems that demand calm and reasoned consideration. If they want socialized medicine in America they should just be honest about it and say so. Instead they spin every discussion, vilify everyone who doesn't agree with them and try to ram their agenda through without consensus. Frankly that scares me.

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