They may not be Death Panels, but they are Death Advocates, and they are back
By Jennifer Popik, JD, Robert Powell Center for Medical Ethics
Editor’s note. This story appeared on page four of the July issue of National Right to Life News. You can read the issue online in its entirety online at www.nrlc.org/uploads/NRLNews/NRLNewsJuly2014.pdf
In a recent Politico Magazine article titled, “Let’s Talk About Death Panels,” Harold Pollack urges reviving one of the most notorious proposals that did not make it into the Obama Health Car Law – “advance planning consultations.”
During the debate over Obamacare’s enactment, there was considerable controversy over a provision in an early version under which health care providers would have been paid by Medicare to discuss with their patients whether they would want life-saving medical treatment.
After former Alaska governor and vice-presidential candidate Sarah Palin dubbed the planning sessions “death panels,” the provision was dropped from the law ultimately enacted.
As Pollack acknowledges, “The ‘death panel’ charge stuck because it tapped into the primeval fears of millions of Americans. It’s only human to worry that we might someday be abandoned when we are old and sick, and thus judged to be a social burden. Such worries run especially deep among senior citizens, who had the most reason to feel vulnerable, and who perceived that they had the least to gain from the ACA.”
In the time since the “advance care planning” provisions were struck from the Obama Health Care law, there have been several attempts to resurrect the concept through various stand-alone bills in the House and Senate. Now, according to media reports, the American Medical Association (AMA) is working directly with the Obama Administration to implement reimbursement by administrative action, bypassing Congress.
In to a Stateline Article from the Pew Foundation titled, “Feds to Consider Paying for End-of-Life Planning,” Michael Ollove writes, “The current effort began last year, when the Illinois State Medical Society recommended that the AMA adopt specific medical codes for the reimbursement of doctors for advance care conversations. Medical codes provide a uniform description of hundreds of medical procedures and services and are used by medical providers, hospitals and insurers across the country. In response to the Illinois request, an AMA panel approved a new code for advance planning.”
The AMA is expected to submit the proposal to the Centers for Medicare & Medicaid Services soon so that providers all across the country can be reimbursed for these “advance planning conversations.”
Such federally funded “advance care planning” conversations pose a very real danger, because they are likely to be used to nudge people to reject life-saving medical treatment they might otherwise want.
Advocates of using tax dollars to pay for “advance care planning” claim it is intended to promote neutral, fully informed planning by which patients can be assisted to implement their own values through legally valid advance directives. Unfortunately, however, there is abundant evidence that a combination of cost pressures and the ideological commitment of a significant number of health care providers to limitation of life-saving treatment for those deemed to have a “poor quality of life” would in practice lead to many federally funded advance care planning sessions being used to exercise subtle – or not-so-subtle – pressure to agree to reject life-preserving treatment.
While the advance care planning provision in the early version of what became Obamacare was being debated in Summer 2009, author and blogger Lee Siegel, in general a strong advocate of President Obama’s approach to health care restructuring, wrote:
[O]n one point the plan’s critics are absolutely correct. One of the key ideas under end of-life care is morally revolting.
. . . .
The section, on page 425 of the [original House] bill, offers to pay once every five years for a voluntary, not mandatory, consultation with a doctor, who will not blatantly tell the patient how to end his or her life sooner, but will explain to the patient the set of options available at the end of life, including living wills, palliative care and hospice, life sustaining treatment, and all aspects of advance care planning, including, presumably, the decision to end one’s life.
The shading in of human particulars is what makes this so unsettling. A doctor guided by a panel of experts who have decided that some treatments are futile will, in subtle ways, advance that point of view. Cass Sunstein, Obama’s regulatory czar, calls this “nudging,” which he characterizes as using various types of reinforcement techniques to “nudge” people’s behavior in one direction or another. An elderly or sick person would be especially vulnerable to the sophisticated nudging of an authority figure like a doctor. Bad enough for such people who are lucky enough to be supported by family and friends. But what about the dying person who is all alone in the world and who has only the “consultant” to turn to and rely on? The heartlessness of such a scene is chilling.
It has become widespread to now talk about treatment as being costly and burdensome, depending on one’s ‘quality of life.” Pollack himself illustrates this, writing, “Under the current system, physicians can bill Medicare for aggressive imaging, procedures and chemotherapies treatments that may bring little patient benefit in advanced illness. Doctors and hospitals are far more handsomely rewarded for the placement of a feeding tube or a ventilator than they are for meeting with patients and families to determine whether these therapies are helpful or wise.”
In a taxpayer-funded advance care planning session, a patient with cancer might well be told chemotherapy provides little benefit because it will leave him or her with a disability and only “prolong life,” without a cure. The extra period of life might be exactly what a person would want, but because the treatment was presented in such a negative way the patient might well be lead to agree to reject treatment.
A major campaign (the subject of a forthcoming NRL News Today article) is now being waged to show videos to patients that are clearly weighted to persuade them to forego cardio-pulmonary resuscitation, and its proponents do not hesitate to cite the financial savings associated with the increased number of viewers (as opposed to patients not subjected to the videos) who agree to DNRs. Importantly, there is no apparent realistic way to adequately monitor the interactions in such tax-funded sessions to ensure that the presentation of options is done in a neutral way, rather than one biased toward rejection of treatment.
A precedent on the federal level is a Veterans Affairs patient decision-making aid that was the subject of considerable discussion during the debate over the Patient Protection and Affordable Care Act, a 53-page production entitled “Your Life, Your Choices.” The booklet had worksheets to fill out for “Current Health,” “Permanent Coma,” “Severe Dementia,” “Severe Stroke” and “A future situation of concern when I might not be able to express my wishes.”
For each of these there was a section on “quality of life.” Only for current health was there a choice to affirm that life is worth living without reservation. For all of the others, the choices were “Life like this would be difficult, but acceptable,” “Life like this would be worth living, but just barely,” and “Life like this would not” – the “not” is underlined – “be worth living.” In each circumstance except current health a negative picture was given. For example, “Terminal Illness” was described as a state in which you “have a lot of discomfort that requires medication [,] are in bed most of the time due to weakness [, and] need help with getting dressed, bathing, and bowel and bladder functions.” You can read more about this at www.nrlc.org/archive/news/2009/NRL07-08/RationingPage1.html; and www.nationalreview.com/articles/228199/your-life-not-worth-living/jim-towey.
Of course, what people experience when terminally ill varies widely depending on the particular illness and many other factors, but this booklet seemed designed to lead people to believe that life with terminal illness will be almost unremittingly bleak. In the words of Paul Malley, President of the national non-profit organization Aging with Dignity, “’Your Life, Your Choices’ encourages our nation’s service men and women to look at illness and disability as things that render life not worth living.”
When “advance planning” is so heavily promoted by advocates of cost-cutting and the “quality of life” ethic, we need to consider it with a critical eye – one that asks “who is driving these conversations, and what will they say to people in a vulnerable position?”
The National Right to Life Committee supports the use of advance directives by which individuals may indicate their wishes regarding medical treatment should they become incapable of making health care decisions; indeed, we promote our own alternative, the “Will to Live,” and make available separate forms complying with the laws of each of the states.
Our concern is that in practice federally funded “advance care planning sessions” are likely to pressure patients into rejecting treatment essential to preserving their lives in a manner they would be unlikely to agree to under conditions of truly informed consent.