Diagnosis for Democracy
Insights into the State of Our Union
A Blog by Rob Tenery, MD

March 10, 2011: Death Panels: Probably Not------A Trojan Horse: Maybe

By Rob Tenery, MD on March 10, 2011

The term Death Panels conjures up thoughts of the horrific acts in Nazi Germany in the 1930s and early 1940s under Adolph Hitler. Recently, this term is often associated with the controversial subject of Advance Directives---documents that list a patient's end-of-life care wishes or specify a designee who will make those decisions in the event the patient becomes incapacitated.

This is not a new concept. Medicare statutory language in sections 42 USC 1396a and 14406 lay out the funding program’s policies on advance directives. *

The Patient Self Determination Act (PSDA) was passed by Congress and enacted in 1991. The law requires all health care institutions, that receive Medicare and Medicaid funding, provide patients with written information about their requirement under state law to execute advance directives. These facilities must now develop policies that deal with termination of life-sustaining treatment, document in the patient’s record whether an advance directive has been executed, educate their staff as to their policies, and ensure their institution complies with state law, or face loss of federal funding. (1)

Texas Medical Association policy 85.003 Education of Advance Directives:         ...encourages its members to educate patients, families, caregivers, and significant others in the necessity to have an appropriate, properly executed advance directive to protect the patient’s wishes in a pre-hospital environment and in the appropriate use of emergency medical services in terminal situations.

Under an Executive Order, enacted on January 1 by President Obama, physicians would now be reimbursed through the Medicare and Medicaid programs for discussing options on end-of-life care that could include advance directives with their patients. Supporters of this issue, which are largely on the 'left' feel this will help to insure that 'patients get the care they want,' while opponents, mostly on the 'right' decry that allowing this new rule to become law could be used to 'justify withdrawal of life-sustaining treatment from people with severe illness.' (2) Due to a backlash of concern over the issue, an administrative official announced on January 5 that, "we will amend the regulation to take out voluntary advanced care planning."

When the Patient Protection and Affordable Care Act (PPACA) was signed into law on March 23, 2010, it made no mention of advance care planning. Section 1233 of the bill, passed by the House of Representatives, allowed Medicare to pay for consultations about advance care planning every five years. In the final version, this section was not included in the final bill that was sent to the President. The administration was able to bypass the legislative mechanism with the rule-writing process by signing into law a new regulation, effective January 1, that Medicare will cover ‘voluntary advance care planning,’ to discuss end-of-life treatment, as part of the annual visit. (2)

By one estimate, end-of-life care accounts for about 10-12% of all health care spending. (3) In 1997, of the 2.3 million registered deaths, 80% were Medicare beneficiaries at the time of their demise. According to the Medicare Payment Advisory Commission (MedPAC) about 25% of the total Medicare budget is spent on services for beneficiaries in the last year of their life, and 40% of that during the last 30 days. (4,5)

Physicians appear to be caught in the middle. When first accepting the medical degree, physicians swore an oath to do no harm. Stated in another way, physicians vowed to use all means available to care for their patients. There are two words or phrases in the previous sentence that bear closer understanding. The first is available---using the best resources in terms of medical knowledge and therapeutics obtainable. It is clear to see that now constraints have been introduced. Not all expertise, tests, procedures and medications are accessible to each and every patient throughout this country. The majority of the reasons involve costs and location. The second word is care or care for. Care means to treat the patient's malady. It does not automatically imply a cure of the patient's malady. Is the treatment to arrest the ravages of the disease with hope of recovery? Is it palliative? Herein lie the other constraining factors, the use of obtainable resources based on the physician's judgment and the patient's wishes. Although medicine is a science, it is still in its infancy. 'Miracles' happen every day. Even with the best and brightest our profession has to offer, outcomes are sometimes unpredictable. As the knowledge base and skill sets increase, those instances of unpredictability decrease. As the certainty of therapeutic outcomes increase, so does the cold, hard concept of cost/benefit ratio. With a growing patient population and increasingly limited funding, reality sets in.

This raises two critical questions that should be removed from the political debate: Does reimbursing these consultations under government funded programs save money to the health care delivery system? Second, does making decisions on end-of-life care more accessible, which can include advance directives, lead to rationing or patients forgoing care, either by the patients themselves or the delivery system?

The answer to the first question is addressed by bioethicist Ezekiel Emanuel, M.D. in his JAMA article published in June 1996. In it, he states, "the nonrandomized trials of hospice and advanced directives show a wide range of savings, from 68% to none...the existing data suggest that hospice and advance directives can save between 25% and 40% of health care costs during the last month of life, with savings decreasing to 10% to 17% over the last six months life and decreasing further to 0% to 10% over the last twelve months of life...they do indicate that hospice and advanced directives should be encouraged because they certainly do not cost more and they provide a means for patients to exercise their autonomy over end-of-life decisions." (3)

The answer to the second question of withholding care either by treating physicians or self-rationing of his/her own care by the individual patient is much more complex. According to Dr. Maria J. Silveria, an assistant professor of internal medicine at the University of Michigan, reported in an observational study published in the New England Journal of Medicine, "29.8 percent of patients they studied needed some form of medical decision-making on their behalf before they died." In that same study, nearly 70 percent had completed an advanced directive. (5) In a related article published in the Archives of Internal Medicine by Anne M. Walling, MD and associates, she reports "...persons dying in the hospital often receive burdensome care immediately before death that may not match patient preferences...Although medical care should be tailored to achieve patient's goals and prior work shows that patient's preferences depend on prognosis, medical care cannot be guided by informed choices absent communication about current clinical status and what course is likely to follow." (6) The inference from these studies would seem to lead to the conclusion that some form of advanced planning about end-of life decisions is more likely to match patients' desires and give physicians more direction in the decision making process than facing those decisions only as they arise.

From the above discussion, it may still be impossible to prove that end-of-life planning directives could never potentially limit the care given to patients at their time of crisis. However, it does appear that increased access to consultations with their physicians does indicate that treatment plans can more closely match the patients' desires while not increasing costs to the limited funding system.

Bothersome is the administration's use of rulemaking in bypassing the conventional legislative process. The authority for the President’s action is rooted in the Administrative Procedure Act (APA) that became law in 1946 to provide constitutional safeguards by establishing a basic framework of administrative law governing federal agencies, which included rulemaking. In the 1970s, this rulemaking process was expanded to include additional congressional statutes and the issuing of Executive Orders by the President. (7,8)

For the CMS, FDA, EPA and other federal agencies, using rulemaking is the norm for implementing change. Now our President is resorting to this tactic to further his health care agenda. The Congress may pass legislation that would countermand any Executive Order, but it would take a 2/3 majority to counter a likely Presidential veto. Although the courts are supposed to provide some measure of protection when there is disagreement, the standards to set aside an agency action definitely favor the agency or, in this case, the President---using the definition ‘that the regulation is arbitrary and capricious, an abuse of discretion, or otherwise not in accordance with the law.’ (7)

Although Executive Orders have been used by prior Presidents, using them to bypass the traditional legislative process on health care is a worrisome shift in the balance of power in favor of the person sitting in the Oval office. Also we must not forget that same individual is in charge of the individual appoints to the leadership of the federal agencies. Today it is advanced directives, which will probably not turn back the clocks to the inhumane acts of Nazi Germany. It is, however, a 'foot in the door' which could well be the Trojan Horse for those who would like nothing better than a single payer system.


* Section 42 USC 1396a states: “A State plan for medical assistance must provide that each hospital, nursing facility, provider of home health care or personal services, hospice program, or Medicaid managed care organization receiving funds under the plan shall comply with the requirements of this section…

…Maintenance of written policies and procedures respecting advances directives.

…Provide written information to each such individual concerning an individual’s rights under State law to make decisions concerning such medical care, including the right to accept or refuse medical or surgical treatment and the right to formulate advanced directives.

…To document in the individual’s medical record whether or not the individual has executed an advanced directive.

…To provide for education for staff and the community on issues concerning advanced directives.

Under section 42 USC 14406 continues to clarify Medicare’s position on advance directives by stating: “Nothing in this section shall be construed…

…to prohibit the application of State law which allows for an objection on the basis of conscience for any health care provider or any agent of such provider which, as a matter of conscience, cannot implement an advance directive.

…to require any provider or organization, or any employee of such a provider or organization, to inform or counsel any individual regarding any right to obtain an item or service furnished for the purpose of causing, or the purpose of assisting in causing, the death of an individual…

…to apply to or to affect any requirement with respect to a portion of an advance directive that directs the purposeful causing of, or the purposeful assisting in causing, the death of any individual…”

1. http://www.scu.edu/ethics/publications/lie/v8n1/adnancedirectives.html

2. http://www.nytimes.com/2010/12/26/us/politics/26death.html?_r=2

3. Emanuel EJ. Cost Savings at the End of Life. What Do the Data Show? JAMA. 1996 Jun 26;275(24):1907-14.

4. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1282187/

5. http://www.everydayhealth.com/publicsite/news/view.aspx?id=637582

6. http://www.everydayhealth.com/publicsite/news/view.aspx?id=640540

7. http://en.wikipedia.org/wiki/Aministrative_Procedure_Act

8. Mahler, CC, An Overview of Federal Agency Rulemaking. October 27, 2008.

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