U.S. Sen. Tom Coburn, R-Okla., along with Sens. Christopher Coons, D-Del., and Richard Blumenthal, D-Conn., introduced a bill to the Senate (S. 2240) that would “encourage Medicare beneficiaries to voluntarily adopt advance directives guiding the medical care they receive.” The regulations for the bill are to be created by a broad group of stakeholders.
Specifically, the bill would:
(a) Establish an advance directive certification program
Under the bill, a program would be created that encourages Medicare patients to “adopt and maintain” advance directives. By this term, the bill means
“…instructions that outline the kind of medical treatments and care that such beneficiary would want or not want under particular conditions, and may also include the identification of a health care proxy or legal representative to make medical treatment decisions for the beneficiary if the beneficiary becomes unable to make or communicate these decisions.”
The bill is clear that the program is voluntary, and that a directive can be canceled at any time. The bill also does not supersede state law, suggesting that the bill does not state what must be in the advance directive or what form must be used— those choices are left up to states.
(b) Accredit vendors of online and written stored advance directives
The bill also seeks to examine best practices for current storage and completion of advance directives in order to establish a registry available both online and in hardcopy. It also allows individuals to delete advance directives when no longer valid or wanted.
The bill does not create a national registry, but it allows a person to indicate in their annual Medicare registration where the directive is maintained.
The accreditation part would ensure that vendors have an online process and manual backup with real time access. It would also conform with privacy protections under HIPAA and electronic security.
(c) Provide an incentive for completing an advance directive
The bill allows for payment to a Medicare beneficiary who registers an advance directive. For example, you would be paid $75 if you use an online process and $50 if you use paper. The amount would increase annually– tied to the rate of inflation. This is a one-time cash payment directly to the beneficiary. In addition, the bill requires education materials and programs for beneficiaries.
Not Far Enough
While this bill should be applauded as a step toward making advance directives more readily available when needed, it does not go nearly far enough. For full disclosure, I am the creator of TexasLivingWill.org, an online advance directive completion and storage database. One of the many challenges with a state-by-state approach to registry is that if I were to travel out of state, a hospital or physician may not know to look on this registry for my advance directive. Even within one state, there are few jurisdictions that have a single official registry, or even a government sponsored one. Some private registries charge upwards of $250 per year. Where this proposed bill falls short is in not creating a free-to-the-consumer federal registry that would be known everywhere and accessible by all health care groups.
“Perhaps instead of handing cash to people for filing an AD, that money would be better spend on giving people a paid session with a qualified professional to undergo advance care planning.”
In the original versions of the Affordable Care Act, physicians would be paid for an office visit to discuss advance care planning (more than just completing a document, but rather: “A process that involves preparing for future medical decisions in the hypothetic event that individuals are no longer able to speak for themselves when those decisions need to be made”). This segment of the law was removed after Sarah Palin’s campaign claiming this would establish “death panels” to decide who lives and dies.
This bill does not reinstate funding for such an office visit. The bill requests a one-size-fits all solution through educational materials that do not take into account local differences in law or personal preferences. If there is not a single federally sanctioned form or registry, then education must be local.
Plus, as the history of advance directives has taught, the conversation is usually more important than the document— this bill provides no mechanism for holding meaningful conversations, never mind paying for them. Perhaps instead of handing cash to people for filing an advance directive, that money would be better spent on providing patients a paid session with a qualified advance care planning professional.
A debate in the world of advance directive advocacy has been whether these documents fall under HIPAA. On one hand, there is no private health information in these documents. There is more identifying information about your surrogate (address, phone number, email) than there is about the person completing the document. On the other hand, these documents should be part of the medical record; thus, they would fall under the HIPAA guidelines. This bill removes the question once and for all.
This bill would seem like a positive step to many of us, but there are many voices in opposition. For instance, Wesley J. Smith J.D., the spokesperson for conservative bioethics, is against the bill. Smith does not trust the federal government to run this sort of program. He says he fears that what starts as voluntary would become not only mandatory, but that federal “death panels” would decide who lives and dies. Secondly, Smith says he fears that certain non-profit organizations would use this bill as opportunity to push “ideology” and further the “agenda” of a culture of death, in which such things as assisted suicide and euthanasia are accepted and encouraged. Smith does not provide any evidence that any group is behind this bill.
Some political groups and community members oppose the concept of advance directives. These groups are concerned that advance directives are a slippery slope to required euthanasia, and that there are certain interventions that no one should ever have the right to refuse (artificial nutrition and hydration or “food and water”).
Perhaps the most rational argument against this bill is that the effectiveness of advance directives in honoring end of life wishes has an uneven record. Few studies show that advance directives improve outcomes.
Another concern is that paying people $75 to register a directive may be coercive. The average monthly Social Security benefit is $1,185.36, ranging from an average of $307.72 for spouses of disabled workers to $1,297.55 for retired workers. Thus, the $75 benefit is 5.8 to 24 percent of a person’s monthly income if receiving Social Security (for the one month where the benefit is received). For those on the low end of the scale, this amount may be an overly strong incentive to complete an advance directive. The monetary value may push them to file papers, any papers, without giving adequate reflection and conversation to what is in the advance directive.
What might be most surprising about this bill is its main sponsor, Sen. Coburn. He is a staunch conservative, known by the nickname, “Dr. No.” During the debate about “death panels,” Sen. Coburn is alleged to have supported this damaging rumor.
Life has a way of changing minds. I was taught that the way to convince a legislator that your idea is important is an appeal to personal experiences. Besides being a senator, Sen. Coburn is a physician who has been undergoing treatment for recurrent prostate cancer. His personal struggles and knowledge have likely influenced his bill and his willingness to reach across the aisle for support.
This bill is paved with good intentions. In the end, some pundits feel it does too much; for others, it does not nearly enough to improve death and dying in America.
Craig Klugman, PhD
Craig Klugman, PhD is a bioethicist and medical anthropologist who serves as professor and chair of DePaul University’s Department of Health Sciences. In 2001, he earned his doctorate in Medical Humanities from the University of Texas Medical Branch in Galveston where he studied experiences in death and dying in the community and in individuals. That same year, he moved to the University of Nevada Reno where he taught in the Health Ecology major, the Masters of Public Health (MPH) program, and founded the Program in Health Care Ethics. In 2008, he became the Stewart & Marianne Reuter Professor of Medical Humanities at the Center for Medical Humanities & Ethics at the University of Texas Health Science Center San Antonio where he taught medical, nursing, public health, and allied health students in ethics, communication, and health policy. In addition, he was a clinical ethics consultant with University Hospital and owner of an improvisational comedy theater.
Klugman is the co-editor of “Ethical Issues in Rural Health Care,” creator of TexasLivingWill.org (an advance directive program), producer of the award-winning film “Advance Directives,” and blog editor for bioethics.net. His research has focused on ethics education, public health ethics, and research ethics. He is the author of more than 100 publications and has presented internationally on his work.
Klugman’s columns published here originally appeared on bioethics.net, a website currently maintained by the editorial staff of The American Journal of Bioethics.