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April 23, 2007
Ethical attentiveness at the end of life

As interim director of the John and Susan Wieland Center for Ethics, Kathy Kinlaw was involved with the drafting of a new advance directives bill for Georgians.

The third-year medical students with whom I have the chance to learn in my “Clinical Ethics” course often share stories about the patients and families in their care. In telling these stories, many of which involve patients dealing with serious, life-threatening illnesses, the students reveal a lot about who they are both personally and professionally.

Patients and families are often asked to make hard decisions while grappling with illness. They have to make sense of their plight and find meaning during those difficult times. Longstanding relationships and newly formed patient-medical team relationships often help define those times.

In “The Sovereignty of Good,” author Iris Murdoch indicates that “at the moment of choice most of the business of choosing is already over.” How we make decisions or reframe a new phase of life in light of a significant illness is informed by the fullness of our lives and experiences along the way. What seems to be a “moment of choice” is not really a discrete, isolated point in time. Recognizing or searching for our foundational beliefs, religious groundings and personal values may help provide powerful insight into what continues to sustain us during difficult times.

Advance care planning is the process of making informed choices about one’s health care preferences, including end-of-life care, prior to the onset of an illness. These preferences may be recorded in written advance directives to help guide your treatment if you no longer have the capacity to make your own decisions. Advance care planning can also include discussions about your health care providers and loved ones, as well as discussions with a pre-chosen health care agent. Though it is difficult to predict what specific health care choices one may face or precisely what one’s preferences will be, the more you discuss your values with an appointed agent and other family members, the greater the chances are that your preferences will be followed. These informed conversations are, in fact, the heart of advance care planning.

During the current legislative session in Georgia, Emory’s Center for Ethics was involved in the process of drafting a new advance directives bill for Georgia citizens. The text for House Bill 24 was developed over a six-month period by a task force initiated by Georgia Rep. Steve Tumlin and comprised of almost 30 individuals with diverse perspectives on the issues at hand. In drafting the Georgia Advance Directive for Health Care, the task force combined two already existing advance directive documents (the living will and the durable power of attorney for health care); simplified the form’s language to make the document more “user friendly”; provided additional opportunities for individuals to express their treatment preferences; and clarified witnessing requirements to decrease obstacles to completing the document. The bill has passed both the Georgia House and Senate and awaits Gov. Sonny Perdue’s signature.

What is the role of the University in being ethically attentive at the end of life? It is vital that curricular space, research opportunities and resources exist for medical students, nursing students and students in other health care professions to explore how we care for dying patients and their families. The interdisciplinary Palliative Care Task Force at Emory is assessing current clinical, research, teaching and community engagement resources that will have important intersections with how we think about the meaning of the end of life.

The “Changing the Way We Die” conference, held April 19–20, as part of the Religions and the Human Spirit Strategic Initiative, explicitly involved several religious perspectives, addressed policy questions and allowed the Emory community to converse directly with a patient striving to live fully with a malignant brain tumor. Other strategic initiative programs, such as the global health and predictive health initiatives, provide important opportunities for cross-fertilization and research. In caring for patients, providing leadership in policy and legislative initiatives, and implementing innovative, rich research and teaching, the University has many opportunities to partner with the community in engaged scholarship and practices that explore meaning at the end of life.

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