I came to the field of thanatology through the door of medical ethics. I was always drawn to the study of ethics and was a philosophy major as an undergraduate. But it was a personal experience of medical ethics in action that further plunged me into research about end-of-life decision-making. In 1989, my daughter came into the world with extensive brain-damage due to medical malpractice during labor. She lived for two months in an isolette in a neonatal intensive care unit, where she mercifully died. I wrote a book about this experience, Lost Lullaby, which included the ethical and legal issues of that time, and how thwarted my husband and I were to be able to make end-of-life decisions for our child. I have had other unprecedented kinds of losses (my husband’s pancreatic cancer, my mother’s suicide) that I have written books about and which have contributed to my ability to teach subjects in medical ethics and thanatology.
As a thanatologist, my mission is to have conversations with people from all walks of life about their thoughts and feelings about their own mortality; their experiences of loss; and the decision-making process that takes place, or more often than not does not take place, once an illness has been diagnosed, especially one that can be terminal.
My supposition is that most of us live our lives with the potential of illness at bay and our mortality out of sight so that when we are diagnosed with something that can kill us, we are totally unprepared and cannot think clearly. We react from the instinct of survival.
My research and experience have shown me that we make bad decisions at the end of life, from a place of fear, and consequently extend our lives with poor quality. If only we had spent time while healthy to contemplate various end-of-life scenarios. By doing so, we can eliminate much of the misery for ourselves and our loved ones. I also believe that the period of time leading up to death can be one of spiritual evolution, not one spent in the waiting rooms of countless doctors, but with our family and friends. My husband and I worked together to achieve this before his death.
Recently, I was invited to speak on my local public radio station, WAMC, with Alan Chartock. I planned to discuss the Death with Dignity Initiative, and I prepared myself with statistics and facts from the states where Death with Dignity is legal. (The Death with Dignity Initiative is being presented to the Massachusetts legislators on January 21, 2015. This is a bill I support which legalizes―with restrictions and guidelines―the ability of a competent patient diagnosed with a terminal illness to request and receive a lethal dose of medication with which to end his or her life.) When I arrived at the studio in Albany, New York, with my notes and graphs, Alan told me to put those away and that we are going to have a “conversation.” True to his word, that’s what we had. We explored everything from Death with Dignity to manifestations of grief, from my thoughts on Kervorkian to my mother’s suicide. We had the kind of conversation I hope to have with everyone I meet. I invite you to listen to the interview here.