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NAAG Addresses End-of-Life Health Care Issues

Judy McKee, End of Life Health Care Project Coordinator and Counsel

In an effort to help the public sort through the increasingly complex legal and social questions surrounding end-of-life health care, the National Association of Attorneys General End-of-Life Health Care Project has tackled one of the most basic of consumer issues: How can states ensure that its citizens’ desires concerning treatment at the end of their lives are honored? What changes in a state’s laws or regulations are necessary in order to ensure that its citizens will be afforded adequate pain relief during their lives and in their waning days? What can Attorneys General offices do to educate constituents about advance medical directives and health care powers of attorney?

Launched in 2002 as a part of Oklahoma Attorney General Drew Edmondson’s presidential initiative, the End-of-Life Project has encouraged Attorneys General across the country to take the lead in drafting legislative changes to make medical directives more consumer-friendly, to participate in citizen forums and educational efforts, to hold listening tours to understand the views of a multitude of stake-holders and to review their own jurisdiction’s laws and regulations to ascertain where they may hinder the goals of ensuring that end-of-life wishes be carried out and that a balanced pain policy be pursued. The project published two reports --- the first in 2003 titled, “Improving End-of-Life Care: The Role of Attorneys General,” and the other similarly titled report released in 2004, which outlined the challenges of pursuing the Project’s goals and how Attorneys General might address the various issues raised.1 As a part of this effort, many Attorneys General offices placed sample forms of advance directives and educational material on their websites. The Terry Schiavo case in Florida sparked a national debate and served as an impetus for changes to be made in the laws of several states and tragically confirmed the importance of considering and expressing one’s choices for treatment or non-treatment near the end of life.

In drafting legislation to address end-of-life care issues, states have had to wrestle with a plethora of issues, such as:

  • Should there be a standardized form or should other forms be used and honored?
  • If there is no health care directive, does that create a legal presumption as to the care one desires?
  • Can a medical care directive be overridden if the patient is pregnant?
  • How can an advance directive be revoked?
  • If there are a number of advance directives, which one should be honored? (This can happen if a patient has filled out forms at different hospitals and other forms as part of an estate plan.)
  • Who should make the decision regarding end-of-life care if no one has been appointed?
  • Should medical judgment ever override a medical power of attorney or an advance directive?
  • When a state agency has been appointed guardian, can a decision regarding withholding or withdrawing of life-sustaining treatment be made?
  • How can legislation ensure that a patient’s written instructions follow him from hospital to hospital, doctor to doctor, rehabilitation facility to nursing home?
  • Should the state establish an on-line registry for advance medical directives?

The issue of the state’s role in guardianship for incompetent individuals has been a particularly difficult one to tackle. Recent cases of severe child abuse in Massachusetts and New York, allegedly committed at the hand of natural guardians, have ended up with a judge being asked to decide whether treatment should be continued for the hospitalized children. May a state agree to the withdrawal of life-sustaining treatment that will lead to the death of a child? If so, can the state charge the perpetrator with voluntary manslaughter or murder? How soon may the state act to withdraw treatment?2 Should quality of life be a consideration?

Another issue regarding end-of-life care in which states have recently been involved is the provision of hospice care for children. Once hospice care is chosen, government funds are normally no longer available for treatment care, but only for palliative care. California and several other states are piloting programs that afford children the opportunity to continue to receive treatment that might place a disease in remission while also receiving palliative care in a hospice setting.

The NAAG End-of-Life Project is assisted by the numerous Assistant Attorneys General and Deputy Attorneys General in the Attorneys General offices who are involved in these issues. The Project’s advisors also include a distinguished and committed group of national experts, headed by Myra Christopher, president and chief executive officer of the Center for Practical Bioethics. The Project’s counsel posts monthly “Updates” on NAAG’s End-of-Life website3 that include information on activities by Attorneys General offices; legislative and judicial developments; news and articles on pain management, prescription pain diversion and medical advances; palliative care and hospice information; and other topics related to the project’s mission. The website also contains links to the Attorneys General offices that have end-of-life information posted on their websites and to other Internet sources for advance medical directives, including those that are based on the beliefs of a number of different religions.

With one of the project’s goals being the championing of a balanced pain policy by federal and state governments, the project counsel has worked with DEA and other stake-holders to discover ways in which vigorous enforcement of controlled substance laws will not interfere with patients’ receiving needed and appropriate pain medication. As part of this impetus, NAAG partnered with the Center for Practical Bioethics and the Federation of State Medical Boards to undertake an extensive research project regarding the sanctioning of doctors, both criminally and administratively, for violations of controlled substance laws and regulations. The results of this research study are being prepared and will be the subject of a later article in the NAAGazette.

1 The 2003 report is available at, and the 2004 report is available at

2 While the court was debating the issue in Massachusetts, the child involved began to come out of the coma that medical experts had thought was irreversible.

3 Available at

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