Ethicists question proposed rule that allows reimbursements for pre-planning sessionsA provision of the mammoth health care reform bill that did not make it into the final law signed by President Obama in 2010 is being resurrected as a proposed rule by the Centers for Medicare and Medicaid Services. The rule, if approved after a 60-day public comment period, would provide Medicare reimbursements for health care practitioners to hold discussions with patients about end-of-life decisions and getting them to sign forms indicating how they want to be treated if incapacitated.
Medicare, the federal program that insures 55 million older and disabled Americans, announced the rule Wednesday.
“We all support the idea that individuals have the right to make decisions about their treatment,” said Burke Balch, director of the National Right to Life Committee’s Powell Center for Medical Ethics. “The problem is that in practice there’s a deliberate effort not to give a sort of neutral, balanced, informed-consent type of information so that people can indicate their own preferences, but rather to ‘nudge’ them, in the words of a Health Affairs article we cite, towards the preferred result.”
Balch worried that the kind of counseling about to be promoted by Medicare “cannot be adequately monitored for bias” and may end up being “less about discovering and applying patients’ own wishes than about pushing them to accept premature deaths.”
He warned that the new development comes at a time when there is a desire to “slash health care spending,” as well as a growing view in the medical profession that “life is really only worth living if you have an adequate quality of life, and if you have a profound disability or you’re very old or it’s not expected that your health will be restored to what’s considered an adequate level of functioning, well, you know, you’re better off dead.”
“So we have these two together—the monetary incentive and the pervasive quality of life ethic—that are combining to make these counseling sessions largely about persuading people that they’d be better off rejecting treatment,” he said in an interview.
The National Right to Life Committee is advocating instead that the government set up “a group of stakeholders, including disability rights advocates, older people’s advocates and yes, those who think the problem is people are getting too much treatment and those, like us, who think the greatest problem is people are being denied treatment.” Such a panel, Balch suggests, could “approve patient decision-making aids, whether they are pamphlets or videos” that are neutral and would allow people to make decisions in accord with their values, and not be persuaded by scare tactics.
“Although advance care planning proponents give lip service to honoring individual preferences, in practice its pervasive focus is to ‘nudge’ patients to agree to forego life-saving treatment and even assisted feeding through the use of unbalanced, distorted, and even inaccurate information,” he said.
Balch noted that National Right to Life provides a “Will to Live” form tailored to each of the 50 states, which can be accessed at the organization’s website.
Like National Right to Life, the National Catholic Bioethics Center supports the right of persons to have conversations about end-of-life care. But Marie T. Hilliard, an ethicist at the center, is worried about certain standard advanced directive forms that would have to be completed during the doctor-patient discussions Medicare is proposing.
“They all involve a system of forced choices of boxes to check, the appropriateness of which cannot be predetermined in the originally recommended (by the federal government) timeframe established for patient review and revision, of five years,” said Hilliard, the NCBC’s director of bioethics and public policy. “No one can determine, until faced with the specific health care scenario, the risks and benefits of any treatment, especially the proportionate benefit of antibiotics and hydration and nutrition, years, or even weeks before that dilemma is encountered.”
A better choice for the individual is to have a “well-informed health care agent… to navigate such decision-making in the situation encountered,” she said.
“It is not unusual for a person who has what some label a terminal disease, Alzheimer’s disease, who is not anywhere near end-stage disease, to experience a crisis of dehydration, that merely requires short-term intravenous therapy,” she explained. “Such a system of pre-determined check-off of boxes often are justified to just ‘let nature take its course,’ thus allowing a person who has months to years to live, to die of dehydration, all for the need of a few days of rehydration.”
The reimbursement rate paid under the proposal and other details will be determined after public comments are received, said a Medicare official quoted by the New York Times. People covered by Medicare account for about 80 percent of deaths each year.
With millions of elderly seeking reimbursable health care from the federal government, there is a tendency, Hilliard said, to approach such populations with a rationing of care mentality.
“That negates the dignity of all human beings, especially those due to age, disability or infirmity no longer able to speak for themselves.”
Aside from any ethical issues or concerns about health care rationing, some people expressed a concern that the change was coming about outside the legislative process.
“This rule is buried in a hundreds of pages long regulatory document,” said Wesley J. Smith, a noted expert on end-of-life issues, at National Review’s site The Corner. “That’s how we roll these days as a nation: Bureaucratically rather than democratically.”
“What was not able to be achieved in law, the federal government is attempting to achieve by regulation,” Hilliard stated. “All regulation must have a foundation in law, and this provision was affirmatively negated by Congress. Thus, this raises serious concerns about the regulatory process.”
John Burger is news editor for Aleteia’s English edition.
