The End-of-Life Bureaucracy

Original Article

The federal technocracy, like the old B-horror-movie monster The Blob, grows by sucking all surrounding life into its amoeba-like digestive system. There are never enough bureaucratic controls or government programs to “incentivize” us—in the jargon—to behave in ways the technocrats think best.

That is why we should look with a jaundiced eye at new legislation that would pay Medicare beneficiaries for preparing an advance medical directive. The Medicare Choices Empowerment and Protection Act is founded on the belief of its authors—senators Chris Coons (D-Del.) and Bill Cassidy (R-La.) along with representatives Diane Black (R-Tenn.) and Mike Thompson (D-Calif.)—that we are not doing a good job accomplishing what the government wants us to do. The legislators’ press release claims that 70 percent of us have “thought about” end-of-life care but “only” 30 percent have actually prepared written advance directives that would give instructions if we become incapacitated—and so an inducement is needed.

There is nothing wrong with filling out an advance directive, of course. To the contrary, it is an important task given the evolving economics of medicine, and especially so if one wants expensive life-extending care. But once the government sticks its ever-growing nose into private, individual decisions, they rarely stay private or remain individualized. Hence, the 22-page bill would not just encourage the creation of advance directives. It would also make it easier to federalize the entire sector in coming years.

First, the bill would grant Medicare beneficiaries a onetime benefit of $75 (indexed to inflation) to prepare an advance directive. The wisdom of having the government pay us to take care of our own business is questionable. But this being federal legislation, not just anyadvance directive will do. In order to qualify for the payment, the directive will have to be “certified” by the federal government and “executed in accordance” with the law of the state in which the beneficiary lives, not a federal standard. Okay. But here’s the kicker: To be federally certified the advance directive must be “offered by an entity that has received accreditation from the Secretary” of health and human services.

As with everything governmental, official accreditation favors large, institutional suppliers. To be accredited, vendors would have to meet extensive computer and online technical capabilities, including:

  • the facility to “create, adopt, modify, and terminate an advance directive through an online process.”
  • “comply with an annual quality review to be conducted by the Secretary.”
  • the capacity to provide the state statutory or alternative advance directive forms that comply with the particular laws of each state in which the vendor offers advance directives.
  • the ability to allow “any family member, legal representative, or health care proxy . . . near real-time online access to the beneficiary’s advance directive,” as well as access to “providers of services and suppliers” under Medicare.
  • “comply with the Federal regulations (concerning the privacy of individually identifiable health information),” which is a very complex field of federal civil and criminal law.
  • the capacity to successfully pass “rigorous independent testing regarding standards of timeliness, accuracy, and efficiency” and “real-time tests simulating a realistic volume of beneficiaries and providers accessing advance directives simultaneously.”
  • the willingness and capacity to administer detailed “annual beneficiary surveys” for submission to the government.

That kind of technical know-how and capability will require the business or organization seeking accreditation to maintain a significant computer infrastructure supported by extensive IT capacities and security protocols to guard against hacking. (Good luck with that!) In a nutshell, this is how government favors large institutions over small, while continuing to expand its own regulatory intrusions.

Once a group received accreditation, it would be expected to maintain executed ADs for online retrieval by patient, surrogate, family, and/or health care providers, as, and wherever, needed. (Apparently, the authors are unaware of an invention known as “scanners,” that can copy and email documents anywhere in the world.) The government will also maintain a clearinghouse to each state’s certified AD suppliers, with links, but will not be authorized to store the documents in a federal database.

The intent behind the Medicare Choices Empowerment and Protection Act is obviously not to empower “death panels.” No one would be forced to fill out an advance directive, and noncertified directives could still be crafted, as they are now. The bill would also require that the Medicare and You handbook and the HHS website contain a statement advising consumers, “You should not feel pressured to violate your own values and preferences, and you are entitled to implement them without discrimination based on age or degree of disability.” Of course, such a statement should be in the booklet anyway.

Moreover, because vendor accreditation would be based solely on technical standards—as opposed to moral views—right to life groups with the capacity to develop the required systems could just as readily become accredited as right to die organizations or businesses pushing the forms. Indeed, the National Right to Life Committee’s Burke Balch—an unequivocal opponent of medical utilitarianism—supports the bill as a potential prophylactic against the vulnerable being pressured during end-of-life doctor/patient conferences into refusing expensive treatments, by ensuring that Medicare beneficiaries have wider exposure to—and information about—advance directives that make it easy to request care.

But here’s the problem: Once the federal government gets into the advance directive “certification” and “accreditation” business, a Rubicon will have been crossed. It is not in the nature of government to remain a neutral arbiter. Given bureaucracy’s natural intrusiveness, the bill would, over time, almost certainly result in increased federal influence over the content of our end-of-life choices.

Protecting America’s weakest and most vulnerable patients from being deflected from requesting expensive care is important. But the best protection against that danger is less—not more—centralization. Enlarging the federal bureaucracy’s role in end-of-life choices will ultimately empower the federal bureaucracy’s control over end-of-life care.

Wesley J. Smith

Chair and Senior Fellow, Center on Human Exceptionalism
Wesley J. Smith is Chair and Senior Fellow at the Discovery Institute’s Center on Human Exceptionalism. Wesley is a contributor to National Review and is the author of 14 books, in recent years focusing on human dignity, liberty, and equality. Wesley has been recognized as one of America’s premier public intellectuals on bioethics by National Journal and has been honored by the Human Life Foundation as a “Great Defender of Life” for his work against suicide and euthanasia. Wesley’s most recent book is Culture of Death: The Age of “Do Harm” Medicine, a warning about the dangers to patients of the modern bioethics movement.