Georgia State Law Review Symposium Quinlan at 40: Exploring the Right to Die in the U.S.
Georgia State Law Review and the Center for Law, Health & Society explored the status of the right to die in Georgia and the United States with its symposium “Quinlan at 40 – Exploring the Right to Die in the U.S.,” in honor of the 40th anniversary of the New Jersey Supreme Court’s landmark decision, In Re Quinlan.
Quinlan was the first major judicial decision to hold that life-sustaining medical treatments may be discontinued, even when the patient lacks capacity.
“With new advancements in medicine and the law, more people face difficult end of life decisions,” said April Meeks (J.D. ’17), symposium editor. “The symposium provided an opportunity to reflect on where we are legally in Georgia and as a country— when it comes to making these incredibly important decisions and where the challenges remain.”
“This topic affects virtually everyone – whether as a patient, family member, or professional – but there is a lot of misinformation about it,” said Kianna Hawkins, (J.D. ’17), symposium editor.
“We need to find ways to relay a patient’s wishes clearly and as soon as possible,” explained Dr. Dean Karampelas (J.D./M.S.H.A. ’14), a critical care medicine and pulmonology specialist with the Northeast Georgia Health System. “Patients may receive unwanted care if this information is not available when they come to the hospital. It is really hard for doctors who would have wanted to respect the patient’s wishes.”
In a conversation between Paul Lombardo, Regents’ Professor and Bobby Lee Cook Professor of Law, Karampelas discussed how physicians grapple with issues such as the definition of death, surrogate decision-making, and the right to refuse life-sustaining care, in their day-to-day work. For example, Karampelas described the challenges of helping families understand the decisions facing them.
“Families may believe that there is a greater likelihood of success of medical treatments than there actually is,” said Karampelas, “but these interventions may only prolong death.”
Alan Meisel, professor of bioethics, professor of law and psychiatry and director, Center for Bioethics and Health Law, University of Pittsburgh, and author of the authoritative treatise, The Right to Die, outlined the elements of legal consensus that have developed during the past forty years through statute and case law. “The courts reaffirm that people who have capacity to make decisions for themselves, including terminating life-saving treatment, are able to do so,” explained Meisel. “However, people who lack decision-making capacity still have the right to refuse treatment.”
Thaddeus Pope, professor of law and director of the Health Law Institute at the Mitchell Hamline School of Law, a co-author with Meisel on his treatise, discussed areas of continuing controversy. This included one of the problems Karampelas highlighted – patients getting unwanted medical treatment.
“There is a giant chasm between theory and practice,” said Pope. “Much of the gap is a lack of real informed consent. Patient decision aids, tools that provide relevant medical information in an understandable format such as a video, can act as a bridge to help patients truly understand the procedure they are facing and help them decide whether they want to continue with it or not.”
The luncheon keynote address, “A Contemporary Death, by Margaret (“Peggy”) P. Battin, distinguished professor of philosophy and adjunct professor of internal medicine with the Division of Medical Ethics at the University of Utah, demonstrated how difficult end-of-life decisions are, even for those who have thought deeply about this issues.
Drawing on her celebrated TedMed Talk, Battin shared her personal experiences surrounding her husband’s decision to stop life-prolonging medical care after several years as a quadriplegic and how it challenged her professional work in bioethics on end-of-life care, physician aid in dying, and euthanasia.
“We have moved toward deaths, which are more predictable, where doctors can do more to shape and postpone deaths,” Battin said. “These new patterns of death, though, don’t mesh with many of our political, religious and moral ideas.”
After her husband’s death, Battin remains a proponent of aid in dying. Turning to what can be learned from the aid-in-dying opponents, each of which intend to make human life – and death — better, Batting concluded: “Disability rights advocates remind us to be alert to social programming. Suicide prevention groups offer skill in helping a person think through their choices about whether, when and how to die. And, religious organizations can provide a sense of deep (spiritual) importance of the end of life, for the person, for the family and perhaps for society in general.”
Building on some of the issues highlighted by Battin, the next panel examined how end-of-life decisions affect specific populations.
Michele Bratcher Goodwin (appearing by video), Chancellor’s Professor of law and director of the Center for Biotechnology and Global Health Policy, University of California Irvine, author of a number of books relating to legal issue surrounding women and their bodies, commented on laws that restrict pregnant women’s rights to make decisions at the end of life.
“This raises huge concerns over lack of respect for the autonomy of pregnant women,” she said. “This history of policing women at the end of their life and during their reproductive rights is an issue dating back decades, if not centuries, in our country and is an issue that deserves sustained and considerable consideration.”
“Because most ending-life decisions are made by or for disabled persons, those persons should be a part of the discussion,” said noted disability law scholar, Mary Crossley, professor of law, University of Pittsburgh. The disability community is widely skeptical of the medical community from historic abuses such as forced sterilization, lack of consent in experiments, isolation of persons with disabilities in institutions, and structural biases against home and community-based services. “Doctors may be more likely to advise against life-sustaining treatment for persons with disabilities because of culturally prevalent perceptions of burdensomeness or hopelessness,” she said. “The law does not sanction biased treatment but it also doesn’t effectively constrain biased behaviors or provide a reliable remedy to those harmed.”
Quinlan, like many court cases concerning removal of life-sustaining treatment involved a young person, who had suffered an injury or relatively short illness. The issues are different for older persons, according to Marshall B. Kapp, professor of medicine & law and director of the Center for Innovative Collaboration in Medicine & Law, Florida State University College of Law and College of Medicine, because there is generally a prolonged physical or mental deterioration and the current legal system may not accommodate that reality.
“Many elderly adults with cognitive impairments or dementia may be able to be involved with decision making with support,” said Kapp. “Yet in the law, there is one decision maker, either the individual can make her own medical decisions or she can’t. The law doesn’t reflect the reality that decision-making is often shared between the individual and family members or other surrogates.”
Panelists Sylvia Caley, R.N., (M.B.A. ’86, J.D. ’89), clinical professor of law, director, Health Law Partnership and co-director, HeLP Legal Services Clinic, and Samantha R. Johnson (J.D. ’03, M.B.A. ’14), senior associate general counsel for Grady Health System, concluded the symposium by describing end-of-life decision making in Georgia and challenges to be addressed.
Caley described the tools available in Georgia including advanced directives and physician orders for life sustaining treatment (POLST). “While the advanced directive law is much improved, the current document is very long and may be difficult for persons with limited health literacy,” said Caley. Johnson agreed, “It often requires someone to walk through the document with the patient, explaining it to them and helping them to complete it.”
While a POLST is intended to be an improvement on advance directives, by creating a medical order that is portable and can be implemented quickly, according to Caley . “in Georgia, full life hasn’t been given to the POLST. Many hospitals are treating it like an advanced directive,” said Caley. “The challenge is how to validate an order from an outside physician to ensure that it is proper and that the practitioner who issued it has authority,” said Johnson.
“We were able to bring in an amazing array of speakers to walk us through some of the most challenging questions on this topic, and they provided us with a thought-provoking day,” said Leslie Wolf, professor of law and director of Georgia State Law’s Center for Law, Health & Society. “The papers that will be published in the symposium and the videos of the presentations will serve as a resource for those who are interested in continue to improve the law concerning end of life decision-making.”