Antichoice at the End of Life

This piece is cross-posted in cooperation with The Nation.

Earlier this month, a regulation to provide Medicare coverage for advance care planning counseling—that is, offer reimbursement to doctors for time spent talking to patients about end-of-life care—was abandoned… for the second time.

Section 1233 of the Patient Protection and Affordable Care Act (PPACA) died a first death in the summer of 2009 in the debate over healthcare reform, during which healthcare opponents characterized the provision as a call for government-run “death panels.” Former Lieutenant Governor of New York State Betsy McCaughey, who consulted with Philip Morris while working on the hit piece against the Clinton healthcare plan “No Exit,” coined the “death panel” moniker; Sarah Palin popularized it. Then John Boehner, at the time the House minority leader, claimed that the provision would lead the country down “a treacherous path toward government-encouraged euthanasia.” Fox & Friends repeated the “death panel” meme dozens of times, and soon, the provision was stripped from the healthcare bill.

But last November, the Obama administration quietly inserted it into Medicare’s annual regulations—after the customary public review period. The New York Times‘s Robert Pear broke the news on Christmas Day that end-of-life counseling was to be covered by Medicare.  Immediately, right-wing think tanks, some with legal cases against the healthcare bill, leveraged the “death panel” rhetoric to bolster their arguments.  While “prolife” blogs spread the news alongside accusations that the regulation would further endanger the “sanctity of life,” much of mainstream media pushed back at reemergence of what Politifact called “the biggest lie of 2009.”  On Fox, guest host Tucker Carlson said that the regulation would convince Americans to “forego aggressive life-sustaining treatment,” but was challenged by another correspondent. Nonetheless, the Obama administration, blaming procedural irregularities, dropped the regulation only three days after it went into effect, but it’s clear political considerations played a role.

Opponents of the healthcare bill got the White House running scared by spreading the “death panel” meme from conservative legal groups to Fox to right-wing blogs and back again, both after the Affordable Care Act passed and after Christmas. But they weren’t building a messaging chain from scratch. Instead, they worked the same network that has been mobilized since the 1970s to fight legal abortion. For the past decade, those same religious organizations have begun working to limit treatment choices for those facing the end of their lives, a development that increasingly impedes meaningful healthcare, and resigns countless elders—including millions of aging Baby Boomers—to “healthcare” that does little for, or even damage to, their quality of life.

A host of anti-abortion groups denounced the end of life counseling regulation, including Operation Rescue‘s Troy Newman and Janice Crouse of the Beverly LaHaye Institute at Concerned Women for America. Family Research Council‘s director of Congressional affairs, David Christensen, told The Christian Science Monitor, “We’re concerned this [the regulation] could be misused, especially in a state like Oregon that sees mercy killing as a legitimate medical service.” Three days after Pear’s story, Mathew Staver, chairman of Liberty University’s Liberty Counsel, a conservative legal organization (think “Choose Life” license plates case), said, “When you remove the sanctity of life from the equation and place health care under the control of government bureaucrats, you end up with increased costs, decreased care, and death panels.” Judie Brown, the president of American Life League, gave a succinct summary of the “prolife” conflation of end of life care with abortion: “Nothing good can come of this. This will affect everybody’s parents and grandparents and preborn babies, and it will not affect anybody for the good.”

About 80 percent of Americans wish to die at home, yet 80 percent die in institutions, because the default mode of medical care in the United States is to “do everything,” as Thaddeus Pope, law professor at Widener University, describes it. For the past fifty years, medicine has focused on curing illnesses and ailments but not on guiding patients through the dying process. So terminal patients are now frequently given rounds of treatment long after they’ve been found ineffective simply because doctors fear “giving up.” Aggressive intervention enables doctors and patients to deny the inevitability of death and prevents them from planning for the process of dying.

Particularly for patients over 65, aggressive treatment and their side effects can be more debilitating than what they’re intended to cure. From CPR (reliable statistics don’t exist, but most studies suggest the procedure saves lives less than a quarter of the times it is performed—and often breaks bones) to artificial nutrition and hydration (which employs a stomach tube for feeding even though loss of hunger and the inability to ingest are natural symptoms of the dying process), treatments that don’t actually improve patients’ lives but provide a significant revenue to doctors, hospitals and medical manufacturers are common practice in our medical system. Yet patients often don’t know that they can refuse treatments or decide where to die. Providing insurance coverage for discussions about end-of-life care would help restore choice to those facing a path of unwanted treatment and would reduce the cost of healthcare. It’s a win-win prospect, but that’s the rub: Republicans and their “prolife” allies have characterized any attempts to reform “aggressive care” as cost-cutting attacks on the most vulnerable.

The terms themselves are confusing. “End-of-life care” is often referred to as advance care planning, the process by which a patient talks to their doctor and family about how they wish to die and decides which medical interventions, like CPR, they do or do not want. The advance care planning the Obama administration attempted to include in Medicare is entirely distinct from Death with Dignity (DWD), though both come from a commitment to patient choice and autonomy. State “Death with Dignity” laws allow a patient who has been diagnosed with less than six months to live to ask for lethal medicine from a doctor who cannot be prosecuted. In the United States proponents prefer the terms DWD or aid in dying, while opponents refer to “euthanasia.” Advocates for the availability of good end-of-life care and advance care planning—there is no umbrella term—argue that patients have a right to be fully informed of care options and to accept or deny treatments. End of life counseling simply involves informing patients of their care options (which, if the patient lives in Oregon, Washington or Montana includes Death with Dignity) and helping them to plan accordingly. Since the death of Terri Schiavo in 2005, antichoice groups, the Catholic Church and their denominational and legal allies have raised alarm about “euthanasia” on their well-organized and -funded platform.

At the Pennsylvania Pro-Life Federation annual meeting in 2009, Bobby Schindler, brother of Terri Schiavo and head of the Terri Schindler Schiavo Foundation (recently renamed the Terri Schiavo Life & Hope Network), spoke alongside other anti-abortion luminaries like former Kansas Attorney General  Phill Kline.  Schindler has styled himself as an advocate for the disabled, reflecting a trend among “prolife” groups who have expanded their definition of “innocent life” to include the disabled, elders, the dying, as well as the “unborn” (or “pre-born,” as anti-abortion groups have begun to say).  “Saying Terri was in a Persistent Vegetative State [a medical diagnosis for minimal or no brain function] was dehumanizing,” Schindler told the crowd, “like not using baby for the unborn. We’ve been primarily concerned with abortion but how many are being killed on a daily basis by euthanasia?”

The Pennsylvania Pro-Life Federation is far from the only antichoice group now also fighting patients’ choice at the end of life. The National Right to Life Committee (NRLC) has taken up opposition to health care reform and advance care planning with abandon; their Robert Powell Center for Medical Ethics, named for the disabled early vice president of NRLC, “serves as NRLC’s arm in fighting to protect the vulnerable born from both direct killing and denial of lifesaving medical treatment, food and fluids.” They’ve maintained a blog about end-of-life issues and healthcare reform since June of 2009. These groups have long held that the legalization of abortion has cheapened the value of life; in their eyes Death with Dignity does the same, and legitimizes their fear that the United States is on a “slippery slope” toward state-sanctioned killing of “innocent life” among us.

A collective American reticence to frankly discuss death enables organizations like the Terri Schiavo Life & Hope Network and NRLC to misinform the public about existing government programs like hospice, Medicare and other legal tools for the elderly, like advanced directives and medical proxies, which can provide more control over how they age and die. Combined with a paternalistic medical profession that’s only recently begun training new doctors on how to talk to patients about how to plan their end-of-life care and a Republican party dependent on the support of antichoice groups, “pro-life” groups have been able to fundamentally shape state and federal legislation.

Of course, even in the absence of this regulation, doctors and patients will continue to initiate conversations about end-of-life care—but not frequently enough to save uninformed seniors and terminal patients from painful and pointless treatments they don’t want. And not often enough to stem the crisis in healthcare financing aging Baby Boomers will bring.

When advocates of the Stupak-Pitts amendment to severely restrict abortion coverage took healthcare reform hostage, advocates for women’s health were reminded of the outsized ability “prolife” groups have to determine healthcare policy. The defeat of increased funding for end of life care should serve as a warning to all those concerned about autonomy over their own healthcare choices.

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  • gtn1933

    Red indicates the discussion live on Prescription for America an ABC News Program with the President


    Blue indicates information contained in P.L. 111-5 dated 17 February 2009


    The below thoughts come from reading the Public Law 111-5 dated February 17, 2009 and reading the comments of the President on the ABC News Program, “Prescription for America” which was broadcasted from the White House.


    I am concerned that not enough people understand the provisions of the America Recovery and Reinvestment Act (Stimulus Law) P.L. 111-5 dated February 17, 2009.  If you read the following data from the ABC T.V. Prescription for America and then follow it to the ARRA law you will see what he is saying on ABC might well be written into the Regulations that the Secretary of HEW will be preparing and then published in the Federal Register for comment.  This is how they are going to “reduce costs under Medicare, Medicaid and other programs.  There are no other savings that will equal those to be achieved by reducing, rationing, or denying expensive procedures to people under Government Insurance Programs!  The following has been extracted word for word from the transcript of the ABC News Television Show titled, “Prescription for America”:


    “OBAMA: Well, oftentimes we do, though. There are going to be situations where there are going to be disagreements among experts, but often times we do know what makes sense and what doesn’t. And this is just one aspect of what is a broader issue. And if I could just pull back just for a second, understand that the status quo is untenable, which is why you saw — even though we’ve got Republicans, Democrats, independents, people from all parts of the health care sector represented here, everybody understands we can’t keep doing what we’re doing. It is bankrupting families. I get letters every single day from people who have worked hard and don’t have health insurance. It is bankrupting businesses who are frustrated that they can’t provide the same kind of insurance that they used to provide to their employees. And it’s bankrupting our government at the state and federal level. So we know things are going to have to change. One aspect of it, the doctor identified, is, can we come up with ways that don’t prevent people from getting the care they need, but also make sure that because of all kinds of skewed incentives, we are getting a lot of quantity of care, but we’re not getting the kind of quality that we need. “




    He said that WE know what is right!  What does that mean?  Does the Government set Quality Standards that indicate that people who are at the ACTUARY TABLE AGE where you should have died will not get life extending By-Pass Surgery or Angioplasty?  Those medical regulations are being written now under the ARRA for people under Medicare, Tri-Care for Life, Medicaid!  Is this what the people want or do they want the “Status Quo?”


    The President was then asked the question about a patient wanting an addition CT scan to make sure of the diagnosis on his/her condition.  (This is often done if there is not a clear diagnosis and the patient is worried about their condition that might be “life threatening” and the doctor agrees.)  Here is what the President said:


    OBAMA: Well, you’re asking the right question. And let me say, first of all, this is not an easy problem. If it was easy, it would have been solved a long time ago, because we’ve talking about this for decades, since Harry Truman.


    We’ve been talking about how do we provide care that is high-quality, gives people choices, and how can we come up with a uniquely American plan? Because one of the ideological debates that I think has prevented us from making progress is some people say this is socialized medicine, others say we need a completely free market system. We need to come up with something that is uniquely American. Now what I’ve said is that if we are smart, we should be able to design a system in which people still have choices of doctors and choices of plans that makes sure that the necessary treatment is provided but we don’t have a huge amount of waste in the system. That we are providing adequate coverage for all people, and that we are driving down costs over the long term. If we don’t drive down costs, then we’re not going to be able to achieve all of those other things. And, I think that on the issue that has already been raised by the two doctors, the issue of evidence-based care, I have great confidence that doctors are going to always want to do the right thing for their patients, if they’ve got good information, and if their payment incentives are not such that it actually costs them money to provide the appropriate care. And right now, what we have is a situation, because doctors are paid fee-for-service, and there are all sorts of rules governing how they operate, as a consequence often times it is harder for them, more expensive for them, to do what is appropriate. And we should change those incentive structures.”


    The question, that needs to be answered is who is going to establish the Quality Standards?  What are those Quality Standards going to say, permit, or deny?  If we look at Medicare, they do limit some treatments today and in many cases the doctor has to justify why before that test or this test can be authorized (or treatment).  The treatment prescribed by the doctor may be better than those that are authorized and may be a lot less expensive.  To give a good example, the National Institute of Health indicates that Vitamin C infusion in high dosage can kill cancer.  Chemo cost $1,500 or more per treatment.  Dr. Thomas Levy charges $150.00 for a treatment of 50,000 mg or $250.00 for a treatment of 100,000 mg of vitamin C by I.V. infusion.  Vitamin C will also cure the Flu in hours, and many more life threatening diseases.  Nevertheless, we will not see the Quality Care directives allowing for this procedure. Why?  Because Drug Companies will not make any money by supplying Vitamin C in 50,000 mg bottles or Vitamin C powder that can be delivered in a Saline Solution to a patient.


    The next exchange provides us something some concerns!




    “{JANE STURM: Caregiver for 105-year-old mother: Yes.


    SAWYER: Hazel Homer (ph), 100 years old and she wanted…


    STURM: She is 105 now. Over 105. But at 100 the doctor had said to her, I can’t do anything more unless you have a pacemaker. I said, go for it. She said, go for it. But the arrhythmia specialist said, no, she’s too old.


    Her doctor said, I’m going to make an appointment, because a picture is worth a thousand words. And when the other arrhythmia specialist saw her, saw her joy of life and so on, he said, I’m going for it. So that was over five years ago. My question to you is, outside the medical criteria for prolonging life for somebody elderly, is there any consideration that can be given for a certain spirit, a certain joy of living, quality of life? Or is it just a medical cutoff at a certain age?


    OBAMA: Well, first of all, I want to meet your mom.

     OBAMA: And I want to find out what’s she’s eating.




    OBAMA: But, look, the first thing for all of us to understand is that we actually have some — some choices to make about how we want to deal with our own end-of-life care. And that’s one of the things I think that we can all promote, and this is not a big government program. This is something that each of us individually can do, is to draft and sign a living will so that we’re very clear with our doctors about how we want to approach the end of life. I don’t think that we can make judgments based on peoples’ spirit.


    That would be a pretty subjective decision to be making. I think we have to have rules that say that we are going to provide good, quality care for all people.


    GIBSON: But the money may not have been there for her pacemaker or or your grandmother’s hip replacement.


    OBAMA: Well, and — and that’s absolutely true. And end-of-life care is one of the most difficult sets of decisions that we’re going to have to make. I don’t want bureaucracies making those decisions, but understand that those decisions are already being made in one way or another. If they’re not being made under Medicare and Medicaid, they’re being made by private insurers.


    We don’t always make those decisions explicitly. We often make those decisions by just letting people run out of money or making the deductibles so high or the out-of-pocket expenses so onerous that they just can’t afford the care. And all we’re suggesting — and we’re not going to solve every difficult problem in terms of end-of-life care. A lot of that is going to have to be, we as a culture and as a society starting to make better decisions within our own families and for ourselves.


    But, what we can do is make sure that at least some of the waste that exists in the system that’s not making anybody’s mom better, that is loading up on additional tests or additional drugs that the evidence shows is not necessarily going to improve care, that at least we can let doctors know and your mom know that, you know what? Maybe this isn’t going to help. Maybe you’re better off not having the surgery, but taking the painkiller.


    And those kinds of decisions between doctors and patients, and making sure that our incentives are not preventing those good decision, and that — that doctors and hospitals all are aligned for patient care, that’s something we can achieve.


    We’re not going to solve every single one of these very difficult decisions at end of life, and ultimately that’s going to be between physicians and patients. But we can make real progress on this front if we work a little bit harder. “


    We have already a law that talks about use of Electronic Data on the patients medical records and the Quality Of Health Care provisions of the America Recovery and Reinvestment Act P.L. 111-5 in Title VIII so read the following and make your own judgment:


    ”(ii) INFORMATION EXCHANGE.-The eligible hospital demonstrates to the satisfaction of the Secretary, in accordance with subparagraph (C)(i), that during such period such certified EHR technology is connected in a manner that provides, in accordance with law and standards applicable to the exchange of information, for the electronic exchange of health information to improve the quality of health care, such as promoting care coordination.




    ”(iii) REPORTING ON MEASURES USING EHR.-Subject to subparagraph B)(ii) and using such certified EHR technology, the eligible hospital submits information for such period, in a form and manner specified by the Secretary, on such clinical quality measures and such other measures as selected by the Secretary under subparagraph (B)(i). The Secretary shall seek to improve the use of electronic health records and health care quality over time by requiring more stringent measures of meaningful use selected under this paragraph.”




    The Secretary is to establish the “Quality of Health Care” to be used in evaluation of patient care.  This is where the President’s comments in the “Prescription for America” where he indicated that the elderly will not be given expensive health care.  That we will have “rules” that must be followed!  What will be in those (rules) regulations?   Will the rules have an age provisions which indicate that people over the Actuary Life Expectancy will not be given life extending treatment that is expensive?  Because, remember there is always the risk that they might die from the operation or procedure in a short period of time after the costly life extending procedure.


    Read the following, but read into it the power of the Secretary of HEW to establish Quality of Health Care requiring only publication in the Federal Register.  This law already exists and will go into effect for Medicare, Medicaid, Tri-Care for Life, VA Medical Centers and Clinics, Public Health Hospitals, etc. and will underline the areas of concern, but not change the text of the law:






    ”(i) SELECTION.-The Secretary shall select measures


    for purposes of subparagraph (A)(iii) but only consistent with the following:




    ”(I) The Secretary shall provide preference to clinical quality measures that have been selected for purposes of applying subsection (b)(3)(B)(viii) or that have been endorsed by the entity with a contract with the Secretary under section 1890(a). Federal Register,




    ”(II) Prior to any measure (other than a clinical publication. Clinical Quality measure that has been selected for purposes of applying subsection (b)(3)(B)(viii))


    being selected under this subparagraph, the Secretary shall publish in the Federal Register such measure and provide for a period of public comment

    on such measure.




    ”(ii) LIMITATIONS.-The Secretary may not require the electronic reporting of information on clinical quality measures under subparagraph (A)(iii) unless

    the Secretary has the capacity to accept the information electronically, which may be on a pilot basis.




    ”(iii) COORDINATION OF REPORTING OF INFORMATION.-In selecting such measures, and in establishing the form and manner for reporting measures under

    subparagraph (A)(iii), the Secretary shall seek to avoid redundant or duplicative reporting with reporting otherwise required, including reporting under subsection (b)(3)(B)(viii).




    ”(i) IN GENERAL.-An eligible hospital may satisfy the demonstration requirement of clauses (i) and (ii) of subparagraph (A) through means specified by the Secretary, which may include- ”(I) an attestation;


    ”(II) the submission of claims with appropriate coding (such as a code indicating that inpatient care was documented using certified EHR technology);


    ”(III) a survey response;


    ”(IV) reporting under subparagraph (A)(iii); and


    ”(V) other means specified by the Secretary.”




    We can not wait until the proposed restrictions become Mandated Regulatory requirements. I could give you additional information, and will provide it upon your request from articles written by people that also have read the Public Law 111-5 dated February 17, 2009.  Remember the statement the president made in the “Prescription for America” about RULES to be followed in Quality of Medical Treatment.  Those are the ones that the Commission, under the direction of the Secretary of H.E.W. is having written.  I am sure that they will follow the president’s words from Prescription for America.


  • rebellious-grrl

    Anti-choice groups fighting patients’ choice at the end of life is idiotic! End of life care is medical care. It is important to say how you want to be medically treated at the end of your life is crucial to quality of life and may possibly extend that person’s life in the end. People don’t like talking about death but not talking about it won’t make one immortal. Regardless of the irrationalness of the right, everyone should talk to their family, spouse, loved ones about what their wishes are for end of life care. Take the necessary medical and legal steps to ensure what you want near the end of life.

    Great article!

  • prochoiceferret

    There are no other savings that will equal those to be achieved by reducing, rationing, or denying expensive procedures to people under Government Insurance Programs!


    Oh my God… you can’t be serious… are you insinuating that sick people’s health-insurance claims might be DENIED?!? Poppycock! We would never allow that sort of North-Korean-dystopian-ness to happen in this country!

  • crowepps

    Wow, I just can’t believe how you liberals want the taxpayers to pay for your Cadillac health care way past the point where it will actually have any useful medical purpose even though the entire country may be destroyed by the resulting bankruptcy.


  • sactobill

    This is a fine blog post and the author’s Nation piece on the same subject is deservedly receiving wide play. I remain a bit nervious, though, about too tightly melding the EOL and abortion issues. They are really not the same, although they often occasion the same enemies.


    Also, for another look at the death with dignity landscape acted out in full-scale human terms rather than abstract ones, please acquaint youself with my new novel What You Wish For, a family saga set in contemporary Northern California. I am a passionate advocate for this cause, but fiction is the way I thought I could best contribute.

  • crowepps

    I remain a bit nervious, though, about too tightly melding the EOL and abortion issues. They are really not the same,

    The issues are identical — who decides what happens to the body, the person living in it or the people around him/her who are ‘uncomfortable’ when somebody makes a decision different than what they SPECULATE their own would be in the same situation?