By Jane "Danny" Vincent, 3L
July 12, 2012
[NOTE: This essay is the author's final reflection paper on her experiences in an independent study project she undertook with Professor Paul Lombardo in the spring semester 2012, during which she had the opportunity to shadow Grady Health System's medical ethicist, Jason Lesandrini. For a news story about this project, see Law Students Shadow Grady Health System Medical Ethicist.]
On a whim in college I took a genetics seminar. Buried in the science topics on the syllabus was a class session dedicated to genetic counseling. Flunking organic chemistry the previous semester (which unsurprisingly derailed my career plans to be virologist) had (equally surprisingly) not put me off science, and I was somewhat intrigued by the idea of genetic counseling. A profession with the purpose, not of "doing" science per se, but of communicating science to people seemed very appealing. Helping patients digest information about devastating diseases like Tay-Sachs and counseling them through painful decisions regarding pregnancy seemed like a great opportunity to stay engaged in the health sciences. Although I did not know the label at the time, this class was my first introduction to bioethics.
I did not become a genetic counselor. But that genetic counseling class set me on a course that came full circle more than ten years and three thousand miles later at the Georgia State University College of Law. This past fall, a classmate emailed me asking, "Don't you want to join this?" and attached the syllabus for Professor Paul Lombardo's Genetics and the Law class. A week before classes started, I rearranged my entire schedule to take a class on a subject I had left in college. And I rearranged my schedule one more time this spring to enroll in an independent study in medical ethics after Jason Lesandrini, the medical ethicist for Grady Health System, spoke during one of Professor Lombardo's sessions.
I have a public health background and spent several years prior to law school working with various health students and medical residents, and advocating for Grady Health System patients, so I figured I'd be comfortable in the hospital environment. But I was a bit uncomfortable with the ethics piece. Professor Lombardo is a leading scholar on law and bioethics, Jason is working on a PhD in health care ethics, and even my co-student in this endeavor, Jena Jolissaint, has a PhD in philosophy. All I brought to the table was an MPH and a few vague recollections of reading Immanuel Kant while an undergraduate. I wasn't just uncomfortable, I was out of my league. Thankfully, Jason and Professor Lombardo were supportive and provided me with background reading, making sure to answer my questions (even the simple ones). That said, most of my training came on the job.
At some point during the first few weeks of my semester at Grady Health System, a friend of mine posted an article on Facebook by Richard Thaler about ethics and corporate governance related to financial regulation. I was struck then, and have continued to carry with me all semester, Thaler's closing line: "As a matter of logic, if the only standard you are willing to live by is the letter of the law, then you should expect that the letter of the law will become increasingly specific." At the same time I was struggling to ascertain the basic constructs of ethics, I was also fascinated with the relationship between law and ethics.
Jason's position as medical ethicist at Grady Health System used to be filled by a lawyer. Jason is not a lawyer, and although well versed in the laws encircling his discipline, he is very clear to defer a question of law posed by the medical team to the legal department. This happened frequently, and Jason's ability to divine the two was impressive. More than that, what continues to strike me is how many ethical dilemmas are contoured by the law and just how closely ethical decision making mirrors legal decision making.
During this semester I had the opportunity to observe a brain death examination, participate in a consult for an unidentified, surrogate-less patient, and listen in on intimate conversations involving withdrawal-of-care decisions. All of these issues have legal frameworks that set the outer boundaries of medical decisions, but they also all have questions and dilemmas that are unanswered by the law.
Death, for example, was traditionally defined, both legally and medically, as "irreversible cessation of circulation and respiration." After medicine and science advanced to allow artificial support of the heart and lungs, it became possible to maintain these systems without brain stem function. Brain death, having begun as a medical and ethical concept about what constitutes life, over time became a legally accepted and statutorily defined concept in every state. So initially, ethics informed and shaped the law. Now set as the law, the statute informs and shapes the ethics. Brain death is now a legal concept, complete with legal protections afforded the physicians for its invocation. But it did not begin that way. And the evolution does not stop there.
During rounds on the Marcus Stroke and Neuroscience Center Neurocritical Care Unit, I had the chance to observe the first of several tests necessary to declare someone brain dead. Interestingly, these tests are neither statutorily defined nor mandated. While Georgia law permits the declaration of death by "the irreversible cessation of all functions of the entire brain, including the brain stem," the contours of its application in practice are still defined by best practices in medicine and ethics.
Furthermore, some states' statutes have an "override" provision whereby the family can refuse a brain death determination based on cessation of brain death criteria. Under this exception, medical intervention usually continues until cardiac and respiratory functions cease. However, as one Neurology team member expressed, "the whole point of the brain death designation is to take the decision out of the family's hands."
The State of Georgia happens to agree, so we do not have this exception. Still the tension is there, and in the world of ethics, where patient autonomy and preferences are heavily valued, brain death is not a settled question. This is just one example of an area where I observed ethics shaping the law, then the law contouring what is ethically appropriate, and ultimately, the law still leaving areas of gray to be informed by ethics.
Another gray area concerns surrogate decision makers. A core principle of medical ethics is patient autonomy. Even when the patient does not have decision-making capacity, the patient's autonomy is respected through her appointed decision maker, unless she has not designated one. The latter case (the lack of an appointed surrogate) presents an ethical dilemma, and here again the law steps in, this time with a default rule. Georgia law provides for a statutory list of decision makers.
Having just finished Wills, Trusts, and Estates in the fall, I was struck by how similar this default rule in medical decision making is to the laws of intestacy. If a patient chooses to, she can designate whomever she wants to be her healthcare power of attorney, just like a person can distribute her estate to whomever she wants. In the absence of an affirmative decision by the individual (naming of a surrogate decision-maker or distributing one's estate), the State provides a default rule based on what the State thinks the average person would prefer.
Finally, and in general, I have been struck by the parallels between ethics and law on how the framing of the question affects the answer to the question.
Early in my second year of law school, Professor Jonathan Todres challenged the class to draw a line in the case book where/when we could tell how the Court was going to rule in a given opinion. He stressed this point to underline how important rhetoric is when writing and to encourage us to be critical of the analysis behind the argument rather than just accepting the words the Court uses to make its argument. Similarly, Professor Eric Segall, in a discussion on substantive due process and fundamental rights, highlighted Justice Antonin Scalia's preferred reliance on whether the right asserted was a right protected by the "longstanding traditions in American society." "That's all well and good," Segall said, "except everything hinges on how narrowly or broadly the right is framed." In the context of gay marriage, for example, the question basically answers itself, with totally contrary results, depending on how the right is framed: "Is there a historically protected right to gay marriage?" versus, "Is there a historically protected right to order your family relationships without state interference?"
Likewise, answers to ethical dilemmas can be made to appear self evident, if the question is phrased just so. The best example that comes to mind occurred during a consult and discussion involving "futility." Futility is usually defined as the point when physiological systems have deteriorated so drastically that no known medical intervention can reverse the decline. Any intervention or treatment can be futile if it provides no physiological benefit to serve a treatment goal (e.g., it is futile to give you antibiotics to cure a viral infection). Futility as a concept is most controversial when applied to (or brought up in the context of) withdrawal-of-care and end-of-life decisions.
In one particular consult, the medical team argued that further treatment of the patient—who was in multisystem organ failure and who had irreversible neurological damage such that only brain stem function remained—was futile. Georgia does not have a futility statute and so there is no legal authority for the medical team to supersede an authorized decision maker, hence the need for an ethics consult and negotiation about continued treatment. An ethics consult was called to determine whether treatment was futile in this case.
The framing issue as applied to futility at end-of-life care is one of the reasons futility can be so controversial. There are three elements in a futility determination: (1) a goal, (2) an action aimed at achieving that goal, and (3) virtual certainty the action will fail. For our multisystem organ failure patient, and for that matter, any case involving withdrawal of life sustaining medical treatment, the futility determination is answered by the goal set in element (1). If the goal for our patient is framed as "recovering neurological function" or even "elevating clotting factors to stop his head bleed," then the action being taken (continual blood and plasma transfusion) will fail with virtual certainty. In our patient's case, this transfusion protocol had been occurring for ten days with no improvement. If, however, the goal is framed as keeping him alive (as Jason said, "the division of cells"), then the action of blood and platelet transfusion was not virtually certain to fail.
The question, then, is who gets to frame the question in the first instance? In law, the judge decides; whether we like her framing or not, the system has delegated that power to her. In medical ethics, who gets to frame the question is itself an unanswered and disputed question. Some states have passed futility statutes, but these can be vague and medical providers may be hesitant to use them to override a surrogate's wishes. And so, we are back to my initial observation about law and ethics: ethics informs passage of laws, and because the laws leave gray areas, these uncertainties must then be further contoured by ethics.
For the final reflection paper by another student who took this independent study project, Jena Jolissaint, 3L, see What the Grady Health System Ethicist Taught Me about Health Law.
Jane "Danny" Vincent
 Richard Thaler, Corporate Citizens Can Do Good by Being Good, Bloomberg News (Jan. 25, 2012), http://www.bloomberg.com/news/2012-01-26/corporate-citizens-can-do-well-by-doing-good-richard-h-thaler.html.
 Albert R. Jonsen, Mark Siegler & William J. Winslade, Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine 41 (7th ed. 2010).
 Id.; see also O.C.G.A. § 31-10-16(a) (“(1) irreversible cessation of circulatory and respiratory function or (2) irreversible cessation of all functions of the entire brain, including the brain stem.”).
 O.C.G.A. § 31-10-16(a)(2).
 O.C.G.A. § 31-36A-1 et. seq.
 Planned Parenthood v. Casey, 505 U.S. 833 (1992) (J. Scalia, dissenting).
 Jonsen et al., supra note 1, at 20.
 Griffin Trodder, Mediating Disputes about Medical Futility, 8 Cambridge Q. Healthcare Ethics 527 (1999).
 Thaddeus M. Pope, Medical Futility Statutes: No Safe Harbor to Unilaterally Refuse Life-Sustaining Treatment, 71 Tenn. L. Rev. 1, 1 (2007).