Advance Planning for Treatment Denial “Conversations” Spread — But What is Driving the Conversation?

 

By Jennifer Popik, JD, Robert Powell Center for Medical Ethics

From her cubicle at Vital Decisions in Cherry Hill, N.J., Kate Schleicher counsels people with terminal illnesses. (Photo by Emma Lee/WHYY)

From her cubicle at Vital Decisions in Cherry Hill, N.J., Kate Schleicher counsels people with terminal illnesses. (Photo by Emma Lee/WHYY)

Those seeking to fund advance planning “conversations” — efforts to encourage doctors or others to talk with potential patients about whether they should receive life-saving medical treatment if incapacitated– are progressing on many fronts. Not only are there several bills pending before Congress, but some insurers have gone ahead and started paying health care providers to have these conversations with patients– even using “cold calls” to question them about whether they really want life-saving treatment, food, and fluids. Additionally, the federal government’s Center for Medicare and Medicaid Services (CMS) is expected to decide on an American Medical Association (AMA) proposal to give these conversations a medical billing number which would mean that doctors across the country could begin receiving tax dollars to pay for them.

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. Now, however, widespread efforts are underway to resurrect the measure.

Even those who promote advance planning consultations, like Harold Pollack, recognize (as noted in his Politico piece “Let’s Talk About Death Panels”),

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 revive the concept through various stand-alone bills in the House and Senate. Now, the AMA is working directly with the Obama Administration to implement reimbursement by administrative action, bypassing Congress. In addition, rather than wait for Congressional or administrative action, private health insurers have gone ahead and started paying providers to have these conversations.

An August 30, 2014 New York Times piece, “Coverage for End-of-Life Talks Gaining Ground” by Pam Belluckaug, details this reimbursement trend. We read

“We are seeing more insurers who are reimbursing for these important conversations,” said Susan Pisano, a spokeswoman for America’s Health Insurance Plans, a trade association. The industry, which usually uses Medicare billing codes, had created its own code under a system that allows that if Medicare does not have one, and more insurance companies are using it or covering the discussions in other ways.

This year, for example, Blue Cross Blue Shield of Michigan began paying an average of $35 per conversation, face to face or by phone, conducted by doctors, nurses, social workers and others. And Cambia Health Solutions, which covers 2.2 million patients in Idaho, Oregon, Utah and Washington, started a program including end-of-life conversations and training in conducting them.

Excellus Blue Cross Blue Shield of New York does something similar, and its medical director, Dr. Patricia Bomba, has spearheaded the development of New York’s advance directive system. Doctors can be reimbursed $150 for an hourlong conversation to complete the form, and $350 for two hours.

Detailing another trend, Kaiser Health News published a story on August 27, 2014 by Elana Gordon titled, “Operator? Business, Insurer Take On End-of-Life Issues By Phone”. In the piece, Gordon details how insurers are cold-calling lists of people the insurance company provides.

From her cubicle at Vital Decisions in Cherry Hill, N.J., Kate Schleicher counsels people with terminal illnesses. “My name is Kate. I’m a health care counselor,” the gentle voice says from her cubicle in Cherry Hill, N.J..

This is no telemarketing call … it’s about the end of your life. Kate Schleicher, 27, is a licensed clinical social worker, who knows almost as little about you as you do about her. Except she knows your phone number, your insurance provider and that you are pretty sick.

Schleicher is one of 50 social workers at a company called Vital Decisions. After sending a letter (people rarely respond) counselors essentially cold-call to offer what they describe as “nondirected” end-of-life counseling.

While the stated goal of these conversations is to elicit patients’ views on treatment, another more sinister motivation often emerges. As Kaiser reported,

And when these conversations do happen, there can be another byproduct: reduced costs. Research is finding that when patients fully understand aggressive care, many choose less of it. By Daitz’ [Vital Decisions CEO Mitchell Daitz] own rough estimate, the company’s services have resulted in about $10,000 less in health care spending per patient, “$100 million to the health care system in 2014.”

Gordon goes on to report that

[S]ome people are wary of the company’s approach. Dr. Lauris Kaldjian, professor of bioethics at the University of Iowa, has concerns about the social worker, patient and family never actually meeting. “Because if you don’t have enough knowledge about what’s actually going on with the patient, it would actually be irresponsible to pretend to have discussion that depends upon such knowledge.”

End-of-life decisions are hard to keep totally neutral, he says, so that’s why he’d want full transparency from insurers and the company to guard against bias in the sessions.

But in a move that would be far more significant, Medicare may begin covering end-of-life discussions next year if CMS approves a request from the AMA. One of the AMA’s roles is to create billing codes that all of the different providers can use to have a uniform system to be paid. Up until now, there has been no Medicare code to submit for payment regarding an advance planning consultation. A decision is expected this fall.

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” often 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 common now to 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.

Importantly, there is no apparent realistic way to adequately monitor the interactions in such tax-funded sessions so as 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 here.

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?”

Note: 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.

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