No one is happy these days with how we die in America. In just the past few months, we’ve received reminders of that sad reality. In September 2014, the Institute of Medicine came out with its report Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, and in October, Dr. Atul Gawande published Being Mortal: Medicine & What Matters in the End to much acclaim. Each of these works describes our society’s—and in particular the medical care system’s—failure to provide people with meaningful choices and support regarding the care they receive at the end of their lives.
While certainly not the only culprit in this woeful state of affairs, the law undeniably plays a significant role in shaping practices surrounding end-of-life choices. The latest article by Lois Shepherd, The End of End-of-Life Law, seeks to reorient how we think about the law’s approach to medical decisions made near the end of life. Shepherd has thought and written about dying and the law for years, and in this latest article she argues that the law should approach questions about end-of-life care in the same way it approaches other important medical choices, without “special laws, special burdens of proof, or unique requirements for documentation.” As she points out, decisions made at the end of life are not the only medical decisions that are important and permanent, with potentially irrevocable consequences. The touchstone for all these decisions, according to Shepherd, should be respect and care for patients and their families, and our legal framework should help rather than hinder that focus.
The article starts with a helpful summary of the existing legal approach to end-of-life decision-making (an approach synthesizing statutes and case law from fifty states and supplemented by federal laws and payment systems), and then it recommends that we jettison this elaborate structure. In the section titled “Even if you do everything right, the law is still a problem,” Shepherd recounts in some detail the stories of two cases that illustrate some of the many problems with the existing framework. To be clear, her point is not that the law is either too permissive or too stingy in permitting the termination of treatment; instead her point is that the law—with its obsession with documentation, formalities, and rigid priorities—too often proves uncaring and disrespectful of the true needs and interests of patients and their families.
To remedy the situation, Shepherd describes eight general principles that should guide the law relating to important medical decisions, whether or not they are usually described as end-of-life decisions. Several common themes emerge from this list of principles: The law should enhance, not obstruct, the ability of patients and their families to reach and implement choices consonant with the patient’s interests and values, even when the patient has failed to engage in any advance care planning. Communication about health care decisions should be encouraged. Decisions should not be rushed. It should be simple to appoint a health care agent with broad decision-making authority. Yet despite a general reluctance to see “more and better drafted laws” as the cure for existing problems, Shepherd is resolute that the law should include protections tailored to some patients’ particular vulnerabilities and provide a forum for resolving cases where irreconcilable disagreements among patients, families, and providers arise.
A critic might chide Shepherd for failing to present any kind of roadmap for turning her general principles into a legal reform proposal or to detail the challenges that any attempt at reform would encounter, but those are not her project. Shepherd’s goal, as I understand it, is to describe the key characteristics of a legal approach to important health care decisions that prioritizes care and respect for patients and their families. In short, she is prodding us think carefully and anew about what the ultimate goals for laws governing medical decision-making should be. To borrow the oft-quoted phrase from Stephen Covey’s The 7 Habits of Highly Effective People, she is reminding us to “begin with the end in mind.” That’s good advice, particularly since the “thick and sometimes impenetrable end-of-life legal apparatus” that exists today is the product of multiple, uncoordinated attempts over the past four decades to fix discrete problems that arose as technology advanced and ideologies advanced or receded. One could argue that we got where we are today by proceeding without a clear and overarching end in mind.
Of course, “beginning with the end in mind” has dual meanings here. In reviewing Being Mortal for The Guardian, Gavin Francis wrote: “The message resounding through [the book] is that our lives have narrative – we all want to be the authors of our own stories, and in stories endings matter. Doctors and other clinicians have to get better at helping people with their endings. …” The law needs to get better at helping people with their endings as well, and The End of End-of-Life Law provides a wonderful contribution to that project.