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GITENSTEIN INSTITUTE LAUNCHES LEGAL MAP FOR ADVANCED CARE PLANNING

-By Christopher Czerwonka

For the past two years, the Gitenstein Institute for Health Law and Policy at Hofstra University’s Maurice A. Deane School of Law has been engaged in an ambitious and unprecedented project to map every single advance care planning law across all fifty states and track, from date of first enactment, such laws in each jurisdiction. With the project complete, we now take this opportunity to reflect on where we’ve been and where we are going, and for that matter, to revisit why we chose to engage in this project.

Studies show that about 60% of individuals find it extremely important to limit the burden on family members who may be required to make tough medical decisions on their behalf. Yet, 56% have not communicated their end-of-life wishes.

For those who have not appointed surrogate decision-makers, and become unable to make their own medical decisions, state law may authorize the appointment of a decision-maker. However, insofar as the law offers a default position, it does not always result in a patient without capacity being represented by the surrogate decision-maker whom he or she would have chosen. Oftentimes, the broad language found in many states’ laws leaves gaps or uncertainties in the hierarchy of appointment that it aims to establish. For instance, if a patient has three children, the law may not specify which of those children should become the decision-maker. And when family members disagree on the course of a loved one’s treatment, emotions and family dynamics may overshadow the patient’s wishes. Therefore, patients must understand the benefits of designating a health care proxy while capable and long before facing serious or life-threatening illness.

The legal map on advance care planning is part of our broader Conversations in Health and Treatment (“CHAT”) Project, which aims to encourage every person to have conversations with their health care providers and loved ones regarding their wishes relating to end-of-life care. The map, which is available at www.thechatproject.org, takes this CHAT initiative one step further by placing in the hands of every citizen the full array of legal mechanisms for giving binding effect to their health care wishes.

With major advances in medicine’s ability to prolong life through extraordinary means, the law has had some catching up to do in the last 40 years or so. Beginning in 1976 with California’s passage of the nation’s first living will regime, this area of law has developed rapidly. From the adoption of the Durable Power of Attorney in California in 1982 to the health care proxy laws of the early 1990s, to the somewhat more unified advance care planning laws of today, changes in the law are reflective not only of the forward march of science, but of the changing nature of the conversation around end-of-life care in light of these advances. For the first time anywhere, researchers, scholars and the general public will be able to visualize these changes, while gaining the information they need to make informed decisions about their own end-of-life wishes.

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  • It was rewarding to work on an issue of national importance. It’s interesting to see how different each state’s laws regarding advanced directives are. While completing the legal map was challenging at times, knowing that I was contributing to a project that would provide people with the necessary information on how to plan for end of life care made the hard work worth it.” – Taylor Pugliese, 3L
  • I see the legal mapping project as a major step forward in advance care planning, and view the work as a vital part of work of national importance. I look forward to witnessing it reach its full potential as both a legal tool and a centralized resource for policy historians and the public at large. – Christopher Czerwonka, Alumn
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