Senator Advances Bill To Pay Medicare Beneficiaries To Register Advance Directives

Senator Advances Bill To Pay Medicare Beneficiaries To Register Advance Directives

Posted on Tuesday, April 22nd, 2014 at 7:33 am by lifemediamatters

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 It also allows individuals to delete advance directives when no longer valid or wanted.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, 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.

Text from draft of S.2240

Text from draft of S.2240

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.

Too Far

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.

Personal Reflections

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.

U.S. Sen. Tom Coburn, R-Okla.

U.S. Sen. Tom Coburn, R-Okla.

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.

Alzheimer’s Disease Support Model Could Save Minn. Millions

Posted on Monday, April 21st, 2014 at 8:47 am by lifemediamatters

As states eye strategies to control the costs of caring for Alzheimer’s patients, a New York model is drawing interest, and findings from a study of Minnesota’s effort to replicate it shows it could lead to significant savings and improved services (The Washington Post).

How Dementia Is Changing Me: My Battle With An Ever-Shifting Identity

Posted on Monday, April 21st, 2014 at 8:32 am by lifemediamatters

For my 61st birthday, in 2010, I was given the diagnosis of microvascular disease, after Alzheimer’s, the second leading cause of dementia. I was – as my rather blunt neurologist put it – already “dementing”. Insofar as I had thought about dementia until then, I was unaware that the word had a verb form: he/she/it dements, they dement, we all dement. Yet, no matter, I was incredulous that this absurd verb could apply to me. Now, two years later, “the cloake sitteth no lesse fit” on my chastened back (The Independent).

California ‘Death with Dignity’ Advocates Launch New Campaign

Posted on Monday, April 21st, 2014 at 8:32 am by lifemediamatters

A new campaign is underway to legalize physician-assisted suicide in California. Advocates launched a series of online ads last week to begin raising awareness. Still, it could take years for the effort to yield any results (The California Report).

National Health Care Decisions: A Week Of Dying In America

Posted on Friday, April 18th, 2014 at 11:13 am by lifemediamatters


This week is host to National Healthcare Decisions Day. The goal of the event is to “inspire, educate, and empower the public and providers about the importance of advance care planning.” Events are being held nation-wide to encourage the completion of advance directive forms as well as conversations with friends and family members about end of life health care wishes.

The latest study shows that 26% of people have completed advance directives. For those over age 65, the completion rate is 51%. Completion rates are higher among whites than other racial/ethnic groups, higher in those with more education than those with less, higher for those with higher incomes, and higher among widows than those of any other marital status.

There has been a push in the last 40 years to create newer and better documents, and to increase completion. I helped create two online websites to do just this. Completion will lead to lower costs in medical care, easier decision-making for family members, and an increased likelihood that one’s wishes will be followed.

The March 2014 issue of Anesthesiology News reported on a study presented at the Society of Critical Care Medicine meeting. Kelli Jackson, a nurse in Santa Barbara, learned that patients’ end of life wishes are often ignored. Jackson’s study looked at a teaching hospital in California where known end of life wishes were not followed in 60% of cases (n=35). Many studies show no change on patient outcome, no change on patient wishes being followed, and no change on reducing costs. Other studies show that there are changes in these areas.

Jackson cited several barriers to having wishes followed; they include lack of time to discuss before action was required and the lack of accessibility to documents outlining patient’s desires.

In the last few years, more emphasis has been placed on having conversations than completing documents. If opportunities are increased for people to speak to one another about these issues- the results could be lower costs, easier family decision-making, and an increased likelihood that one’s wishes will be followed. The most commonly cited system is Gunderson Health Systems “Respecting Choices” program; in its home city of La Crosse, Wisconsin, 97% of adults have advance care plans.

La Crosse is a city of 52,000 people with a median age of 29.2 years. Almost everyone speaks English at home. The percent of residents living in poverty is 23.1%. The population is 89.4% white, 4.2% Asian, 2.3% Black, and 1.9% Hispanic. Nine out of ten residents have a high school degree, and 26.5% have a bachelor’s degree. More than half have never been married, and 4.1% of residents were born outside of the United States. There are two hospitals.

Contrast this with my home of Chicago, with a population of 2.7 million and a median age of 32.9. Around 65% of people speak English at home. About a quarter of all residents live in poverty. The population is 31.9% white, 5.2% Asian, 31.9% Black, and 29.2% Hispanic. Eight in ten people have a high school degree, and a third have a bachelor’s degree. There are approximately 42 hospitals within city limits.

Many Chicagoans have been asking whether the model of La Crosse—being based in a fairly homogenous population—could be transported to a very large, very diverse city. It’s easier to keep track and have files of patient advance care wishes when there are only one or two hospitals.

This week also happens to be the celebrations of two major religions—Easter and Passover. Both of these are focused on death and dying. Good Friday recognizes the day that Jesus was crucified. While Passover is a festival about freedom from slavery, that freedom was only achieved by many plagues- including slaying of children and drowning of Egyptians. My Passover Seder this year was attended by a group that included three physicians (two of whom work in end of life care), two bioethicists (who work in end of life issues), a health journalist, two family members (who have been dealing with their mother’s senior needs), and a college student. We talked about all of the death that was mentioned in the Haggadah (a text that tells the story of Passover and the Seder); a conversation ensued about death with dignity, having decisions honored, and advance care planning.

The goal is not only to encourage others to think about and discuss their own end of life, but also to change a culture that still eschews the subject even 45 years after Elisabeth Kübler-Ross published On Death & Dying. As I say to my students, “The documents are important, but the conversation is critical.”

This message hit home quite personally in the last couple of weeks. A friend was involved in a motor vehicle accident that resulted in her body being maintained on a ventilator. She did not have an advance directive, but being my friend- she had been pulled into conversations about death, dying, and advance care planning on more than one occasion. She also spoke to her husband about her wishes. I recall her telling me that he did not really want to talk about it, so it was more of a one-way exchange. However, when the time came to consider turning off the ventilator, her husband did not hesitate. He knew exactly what she wanted, even if nothing had been written down. He waited a few days for her family to arrive from out of state to say goodbye. Her memorial service was held this week.

The truth is that as a society, we still do not know how to deal with dying or how to honor others’ wishes- or even whether we should honor them. In the last six months, we have seen the high-profile tragedies of Jahi McMath and Marlise Munoz. That these cases haunt us shows that no matter how many conversations we have, no matter how many documents we complete, the culture that does not engage dying needs to change. Health Care Decisions Day is one step toward that goal.