by Craig Klugman, Ph.D.

U.S. Senators Tom Coburn (R-OK) along with Senators Christopher Coons (D-DE) and Richard Blumenthal (D-CT) introduced a bill to the U.S. Senate (S. 224) that would “encourage Medicare beneficiaries to voluntarily adopt advance directives guiding the medical care they receive.” The regulations for this bill are to be created by a broad group of stakeholders.

Specifically, the bill would:

(a) Establish an Advance Directive Certification Program
(b) Accredit vendors of online and written stored advance directives
(c) Provide an incentive for completing an advance directive.

(a) Establish an Advance Directive Certification Program
Under this 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 states that it 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—rather those choice are left up to the states.

(b) Accredit vendors of online and written stored advance directives
The bill also seeks to look at best practices for current storage and completion of advance directives in order to establish a registry that is available both online and in hardcopy and that allows individuals to delete ADs when no longer valid or wanted. This bill does not create a national registry but allows a person to indicate in their annual registration for Medicare where the directive is maintained. The accreditation part would ensure that vendors have an online process and manual backup with real time access as well as conforming 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. 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 assisting in 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 a registry is that if I am traveling 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 very 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.

In the original versions of the Affordable Care Act, physicians would be paid for an office visit to discuss advance care planning (which is 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 that would decide who lives and dies. This bill does not reinstate funding for an office visit to discuss advance care planning or completing advance directives. 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 AD, that money would be better spend on giving people a paid session with a qualified professional to undergo advance care planning.

A debate in the world of advance directive advocacy has been whether these documents fall under HIPAA. On the one hand, there is no private health information whatsoever in these documents. There is more identifying information about your surrogate (address, phone number, and email) than there is about the person completing the document. This has enabled many creative approaches to the documents. On the other hand, these are documents that should be part of the medical record and thus would fall under the HIPAA guidelines. This bill removes this question once and for all.

TOO FAR
While to many of us this bill would seem like a positive step, there are many voices that are not supportive. For instance, Wesley J. Smith JD, the spokesperson for conservative bioethics, is against the bill. For one, Smith does not trust the federal government, especially to run this sort of program. He fears that what starts as voluntary would become not only mandatory but that federal death panels would decide who lives and dies. Second, Smith fears that certain non-profit organizations would use this bill as opportunity to push their “ideology” and further their “agenda” of a culture of death where such things as assisted suicide and euthanasia are not only accepted but encouraged. Smith does not provide any evidence that any group is behind this bill. His is word is supposed to be sufficient.

Some political groups and community members are simply against advance directives overall. 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 people’s 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 the papers, any papers, without giving adequate reflection and conversation to what is in the AD.

PERSONAL CONNECTIONS
What might be most surprising about this bill is the main sponsor, Senator Tom Coburn. He is a staunch conservative, known by the nickname, “Dr. No” earned for being against many bills (especially those with a progressive slant). During the debate over Palin’s death panels, Coburn is alleged to have supported this damaging rumor. Life has a way of changing people’s minds. I was taught that the way to convince a legislator that your idea was important was to appeal to their personal experiences. Besides being a senator, Coburn is a physician (obstetrics) and has been undergoing treatment for recurrent prostate cancer. His personal battles and knowledge have likely influenced his bill and his willingness to reach across the aisle for support.

Coburn’s bill is paved with good intentions but in the end some pundits feel it does too much and for others not nearly enough to improve death and dying in America.