Epilepsy Mortality and Complicated Grief
Katherine Shear, MD and Linda Coughlin-Brooks, RN, BSN, CT
Wednesday, May 21, 2014
People with epilepsy are often told they can live well with the disease, that it's one you can live with and not die from. The reality is tens of thousands of people die each year as a result of having epilepsy. Epilepsy-related causes of death include accidents, suicide, and Sudden Unexpected Death in Epilepsy (SUDEP). An alarming fact is that many of these deaths are of young people in the prime of their lives. While these deaths share some of the characteristics of sudden and traumatic loss, epilepsy-related deaths often present unique challenges. These include making sense of a death that often makes no sense, sorting out responsibility for and preventability of the death, dealing with a long death investigation process that sometimes requires educating the medical examiner on SUDEP, and dealing with the anger toward medical professionals who do not always disclose these risks. Counseling epilepsy survivors often necessitates understanding of complicated grief due to the nature of the death. In this webinar, we will address the central concerns that most survivors struggle with and the themes that caregivers must help survivors address.
The death of a loved one is a uniquely challenging life experience – one of the most difficult a person can face – yet regardless of how and when a loved one dies, most people find a way to come to terms with the loss, reshape their relationship with the person who died, and restore a sense of meaning and purpose in their own lives. However, for an important subgroup, mourning is derailed, leading to development of complicated grief (CG). CG occurs in about 7-10% of bereaved people, and about twice that proportion when the death is sudden and unexpected, as with SUDEP. Issues like those described above related to guilt, anger, frustration and uncertainty can become grief complications if left unattended. Research suggests that people suffering in this way respond to a targeted treatment that addresses grief complications and also supports and revitalizes the natural healing process. This webinar will describe CG and outline a treatment approach that can help.
At the end of the presentation, the participant will be able to:
Linda Coughlin Brooks, RN, BSN, CT, has a private practice in Greenwood Village, CO, helping individuals and families struggling with grief and loss and major life transitions. Since 1975, Linda has worked in varying capacities in clinical medicine, nursing education and research. Sixteen years ago, Linda lost her 17-year-old daughter to sudden unexpected death in epilepsy (SUDEP). With a strong medical background, she had never heard of SUDEP. She started the first SUDEP Task Force in Colorado; she is a published researcher in the American Journal of Forensic Pathology and has written numerous articles on death related to SUDEP. She has been a speaker to the Colorado Coroners Association and participated in legislative initiatives to change processes and identifiers for epilepsy deaths. Currently she is a consultant to the National Epilepsy Foundation as the Support Coordinator of the SUDEP Institute, participating with researchers from NYU and around the country, leaders in the coroner and forensic pathology arenas and participants from NIH and the CDC. Linda’s professional foci also include military loss and assisting families adjusting to the trauma of war, loss of a child, and the ambiguous loss of caregivers.
M. Katherine Shear, MD, graduated with honors from the University of Chicago and attended Tufts University Medical School. After completing residencies in internal medicine and psychiatry and a research fellowship in psychosomatic medicine, she joined the faculty in the Department of Psychiatry at Cornell University Medical College. During her tenure at Payne Whitney Clinic, she established the department’s first clinical research program in Anxiety Disorders. In 1992, Dr. Shear moved to the University of Pittsburgh where she served as Professor of Psychiatry until January 2006. Her work focused on the development and implementation of funded research in anxiety disorders, depression, and grief, primarily in the area of psychotherapy studies. She has conducted studies and provided mentorship for research using a wide range of different psychotherapy methods including psychodynamic psychotherapy, cognitive behavioral therapy, Rogerian reflective listening treatments for panic disorder, and IPT for depression with panic spectrum features.
Most recently, Dr. Shear has worked in the area of bereavement and grief. She recently developed a novel composite psychotherapy for the syndrome of complicated grief. Her work culminated in the publication of the first randomized controlled treatment study for complicated grief in June 2005. In September 2007, Dr. Shear received a $2.6 million five-year grant from the National Institute of Mental Health to conduct the first clinical study to determine the effects of two different models of treatment for complicated grief in older adults. In August 2009, Dr. Shear received a $1.8 million five-year grant for a complicated grief multi-site treatment study examining the relative merits of antidepressant medication with and without complicated grief treatment.
Dr. Shear is currently the Marion E. Kenworthy Professor of Psychiatry at the Columbia University School of Social Work and Columbia University College of Physicians and Surgeons. She is also the Director of the Center for Complicated Grief at Columbia University School of Social Work.