Executive Board
Loretta Downs MA, CSA, President
Loretta Downs retired from a successful sales career to become a professional speaker, writer, facilitator and consultant on the subject of supporting positive experiences at the end of life. After losing dozens of friends and business associates to AIDS in the 1980s, followed by the deaths of her ex-husband and her father in 1991, Loretta embarked on a journey to find meaning in death. She served as a volunteer on the AIDS ward of Illinois Masonic Hospital from 1995 until 2001 when she became, and continues to be, a dedicated hospice and nursing home volunteer. In response to her experiences with her mother and others dying in nursing homes, she developed the Chrysalis Room, a private room where residents who are hospice patients can spend their final days with enhanced care supporting a peaceful and dignified transition surrounded by loved ones. Loretta graduated from the highly regarded Metta Institute End-of-Life Care Practitioner Program in 2006. She is a member of the Illinois Masonic Hospital Ethics Committee, Someone To Trust: Chicago Regional Advance Care Planning Coalition, the Association for Death Education and Counseling, the Illinois Coalition for Improving End-of-Life Care, the American Society on Aging. Loretta has received facilitator and instructor certification under the Respecting Choices Advance Care Planning Model. She holds a Masters Degree in Gerontology.
Karen Nisley Long, MA, Vice President
Karen Nisley Long is program director for the Chicago Region Advance Care Planning Coalition’s Someone to Trust initiative. Karen has been involved with end-of-life care since 1995 when she was part of the communications team that helped announce the results of the Robert Wood Johnson Foundation SUPPORT study. For the following eight years, she worked on the RWJF Last Acts communications project as team leader for the professional audience. During this time, she staffed five national task forces that sought to make improvements in professional education and in health care institutions and policy. Karen also served on the national outreach team for the Bill Moyers PBS series, On Our Own Terms. In 2004, she assisted with the production and dissemination of Clinical Practice Guidelines for Quality Palliative Caredeveloped by the National Consensus Project. Prior to 1995, Karen was an administrator at Northwestern University and a program officer for the Institute of European Studies.
Bruce Blehart, JD, Secretary
Bruce graduated from the University of Minnesota in 1974, Phi Beta Kappa, with degrees in history and speech/communications. He received his JD from DePaul University in 1977. For 21 years, Bruce worked for the American Medical Association in positions relating to legislation and health policy. In 2000, Bruce co-founded LAWprn, LLC, an Internet-enabled source of focused, concise, and actionable news and information designed to help health care professionals understand and avoid legal and regulatory problems. He managed the public affairs activities for the American Association of Oral and Maxillofacial Surgeons from 2003 to 2005, and he currently heads the health policy and government affairs activities for the American Academy of Sleep Medicine.
Julie Goldstein, MD, Past President
Julie Goldstein is an internist, clinical ethicist and palliative care physician who has trained at the University of Chicago, Oak Forest Hospital, Rush-Presbyterian-St. Luke’s and the University of Missouri-Kansas City. She has served at Advocate Illinois Masonic Medical Center since 1996 as hospital ethicist, chief of the section of Clinical Ethics in the Department of Internal Medicine, and faculty attending physician for the internal medicine residency program. More recently, she established and is medical director of the palliative care consultation service at the hospital. She was appointed to the IDPH Hospice and Palliative Care Advisory Board in 2008. She has been active for many years in the development and improvement of the IDPH Uniform DNR Advance Directive Form. Julie has received facilitator and instructor certification under the Respecting Choices Advance Care Planning Model.
Dr. Goldstein coordinated the initiation of the Chicago End-of-Life Care Coalition starting in 2000, and served as founding CECC board president through 2004.
Board Members
Suzanne Blanchard, LCSW, C-ASWCM, MSSA
Suzanne Blanchard began her career at the Cleveland Chapter of the Alzheimer’s Association as the helpline coordinator, support group leader, professional trainer and community speaker. Suzanne worked as a licensed clinical social worker in the field of mental health and aging for over ten years in the Greater Chicagoland hospital and Long-Term Care settings. At Home Bound Healthcare, Suzanne was the Clinical Director, Professional Geriatric Care Manager and CEU presenter. Presently she is the Assistant Administrator for Home Bound Healthcare Hospice. Suzanne received a Baccalaureate Degree in Interpersonal and Public Communications from Bowling Green State University and a Master’s Degree in Social Administration from Mandel School of Applied Social Sciences at Case Western Reserve University. She is a member of the National Association of Social Workers, National Association of Professional Geriatric Care Managers and the Association for Death Education and Counseling.
Jeannine Forrest, Ph.D., R.N.
Dr. Forrest has a 24-year history in the practice, education, and research of older adults and end-of-life care. Her expertise is on pain in individuals with dementia. A faculty member at the University of Illinois at Chicago College of Nursing for 15 years; a golden apple award winner for excellence in teaching; Project Director for a four year National Institute of Health study on delirium in hospitalized elderly. She worked in multiple roles at Chicago’s first hospice (Horizon Hospice & Palliative Care). Collaborates with the World Health Organization as a consultant in palliative care in China. Trained as an Education in Palliative and End-of-life Care (EPEC) facilitator. Member of the Illinois Hospice and Palliative Care Organization’s Board of Directors and serves as a co-chair on the education committee. Currently working with the Alzheimer’s Association on a study involving palliative care for individuals with advanced dementia in nursing home settings. Dr. Forrest is a member of the Executive Committee of Someone To Trust: the Chicago Regional Advance Care Planning Coalition.
Joel Frader, M.D.
Joel E. Frader, M.D. is Professor of Pediatrics and Professor of Medical Humanities and Bioethics at Northwestern University Feinberg School of Medicine and Division Head, General Academic Pediatrics, Children’s Memorial Hospital, Chicago, Illinois. He received a B.A. from Columbia University (1970), his M.D. from Tufts (1974), and an M.A. in Sociology from the University of Pennsylvania (1980) where he was a Robert Wood Johnson Clinical Scholar. He is active in and served in leadership positions for national organizations concerned with pediatrics and with bioethics. He teaches and consults in the area of bioethics. His research interests focus on ethical issues involving children in the health care system as well as innovation in health care, ethical considerations in organ transplantation, children with disorders of sexual differentiation (intersex) and ethics in research involving human subjects. Dr. Frader concentrates his clinical interests on pediatric palliative and hospice care. Joel is immediate past president of CECC.
Amy Frazier, RN, CPHN
Amy Frazier is an RN and Certified Hospice and Palliative Care nurse currently affiliated with Rainbow Hospice and Palliative Care, heading up the LIFE Institute for Learning there. She has worked in hospice for four years and also has a background in home health care and case management. Goals include advancing the cause of good end of life and palliative care through education of both professionals and laypeople, and she believes that networking and synergy between different levels of providers is the most effective approach to this. She actively educates medical residents and supports the clinical and didactic education of student nurses, which she states is also key to the provision of best practices in end of life care.
Daryl Holtz Isenberg, PhD
While earning a PhD in counseling psychology from Northwestern (1981), Isenberg studied how peer-run community groups restore control and dignity to individuals in health crises. Based on the Center for Attitudinal Healing in Tiburon, California, she founded the Family Cancer Support Network for children, young adults and families (1980 to 1999). Isenberg is director of the Illinois Self-Help Coalition (ISHC) and from 1985-1994 she directed the Self-Help Center in Evanston. The ISHC trains peer leaders and professionals as group consultants, and does research with self-help groups. She has organized local and national workshops and conferences, including the 1987 Surgeon General Workshop on Self-Help and Public Health and its follow-up conference in 1989. Isenberg served on the planning committee of the 2nd Chicago Conference on Participatory Research (Loyola University, June, 2002) and as an editor of the book, Participatory Community Research, Theories and Methods in Action(2004).
She currently serves on the advisory board of the National Emphysema and Chronic Obstructive Pulmonary Association. In 1999 Isenberg surveyed life-limiting self-help groups to determine how they handle end-of-life issues which led to her interest in preparing self-help group members to transition to end-of-life care. She works with hospice volunteer, Loretta Downs, and attorney, Leslie Recht offering seminars helping community groups and individuals fill out Advance Directives. She conducts individual video interviews as a strategy to empower these decisions.
Paula Sue Jackson, RN, CCRN
Paula Sue Jackson began as a staff nurse and has worked in Critical Care for 37 years (certified with her CCRN since 1986) in OR, CA & IL. Being at the bedside for these many years has given her an up close & personal look at end of life care, too many times in ICU and not in Hospice. She joined a group working on an End of Life Pathway at Centegra Hospital – McHenry around the time of the Bill Moyers program on PBS & from there joined the Partners Coalition for Improved End of Life in McHenry County, in time becoming its President. She also joined the Someone to Trust Chicago Regional Advance Care Planning Coalition and is certified as a Respecting Choices Facilitator & Instructor and is certified to teach the End-of-Life Nursing Education Consortium (ELNEC) Program. She is also the contact for POLST (Physicians Orders for Life Sustaining Treatment) in Illinois.
She understands the importance of the conversation about good End of Life Care for all adults 18 years and older that people must have and has worked to bring that to the public over her career.
Patricia A. Moore, MSW, LCSW, ACHP-SW
Pat currently serves as the Clinical Coordinator of Ancillary Services at Family Home Health & Centered Hospice headquartered in Addison, IL. She oversees the psychosocial, spiritual, volunteer, and bereavement support functions of this mid-size hospice with a particular interest in team effectiveness to enhance quality of care. Her work with hospice began at Unity Hospice of Chicagoland in 2000 after completing a Master’s in Social Work Degree at the Jane Addams College of Social Work, University of IL/Chicago. Prior to discovering her affinity to end-of-life care, Pam had a varied career as a management consultant to nonprofit organizations, an independent filmmaker, and initiator of a specialized foster care agency for older adolescent wards of the State that pioneered the utilization of single people as foster parent/mentors. A consistent theme throughout her career has been interdisciplinary teamwork amongst dedicated professionals to provide a service or create a product. Pam is a member of the Illinois Hospice and Palliative Care Organization’s Education Committee.
Cheryl Morris, RN, MS, LNHA
Cheryl Morris serves as Vice President of Operations/Partner for Lancaster Health Group a Chicago based company managing and operating seven nursing homes in and around the Chicago area. Ms. Morris is in charge of quality improve, risk management and program development and the preparation and outcome of JCAHO and IDPH Surveys for Lancaster. She received her RN diploma from South Chicago Community Hospital, a BS in Health Science from College of St. Francis and MS in Management from National Lewis University. She has received certificates in Finance and Accounting and Enneagram Studies.
Michael Mutterer, MA, RN, LCPC, CADC, MISA II, LNHA
Michael Mutterer has worked in the field of Mental Health and Nursing over the past 16 years in various capacities. As a Psychotherapist and Clinical Director he developed clinical rehabilitation programming for the Chronic Mentally Ill and Substance Abusing populations. As a Regional Consultant in Long-term care he provided guidance to facility staff in both Geriatric Skilled facilities as well as facilities specializing in treating the Chronic Mentally Ill and Dually Diagnosed populations. He has worked as a Staff Nurse in the Eating Disorder Unit of Linden Oaks Hospital at Edward in Naperville and currently is the Administrator of Home Bound Healthcare Hospice located in Lemont, IL.
Michael received an Associate degree in Applied Sciences in Nursing from Joliet Junior College, a B.A. in Psychology from Edgewood College in Madison, WI and a M.A. in Psychology from The Adler School of Professional Psychology. Michael holds licenses in IL as a Registered Nurse (R.N.), a Licensed Clinical Professional Counselor (LCPC), and as a Licensed Nursing Home Administrator (LNHA). Additionally, he holds certifications as a Certified Alcohol and Drug Abuse Counselor (CADC), a Mentally Ill Substance Abuse Counselor (MISA II), and a National Certified Counselor (NCC). Michael is also an Associate Level trainer for the Crisis Prevention Institute.
Clayton Thomason, J.D., M.Div.
The Reverend Clayton L. Thomason, J.D., M.Div. is the Bishop Anderson Endowed Professor of Religion and Ethics in Medicine and Chair of the Department of Religion, Health, and Human Values at Rush University Medical Center in Chicago, where he directs chaplaincy services and programs in health care ethics.
From 1998-2006, he was Assistant Professor of Spirituality and Ethics in Medicine in the College of Human Medicine of Michigan State University, jointly appointed in the Department of Family Practice and the Center for Ethics and Humanities in the Life Sciences, and Adjunct Professor in the MSU College of Law. He was appointed by then-Governor John Engler in 2000 to serve as the bioethicist and Chair of the Michigan Commission for End of Life Care. He served as Chair of the ethics committee of Sparrow Hospital (Lansing, Michigan); on the Human Subjects Committees (IRBs) of Michigan State University, the Michigan Department of Community Health, and the Michigan Public Health Institute; and on the board of the Medical Ethics Resource Network (MERN).
He is a graduate of the Berkeley Divinity School at Yale, the University of Southern California Law School, the University of California at Berkeley, and Simon?s Rock College. He has been a graduate fellow in bioethics at the Kennedy Institute for Ethics at Georgetown University and the Hastings Center in New York. He currently serves on the boards of the Berkeley Divinity School at Yale, the Chicago End of Life Care Coalition, and Someone to Trust Advance Care Planning Coalition.
Melissa Johnson Williams
Melissais a licensed funeral director and embalmer with more than thirty years experience. Melissa has a bachelor?s degree from Governor?s State University. She has served on the board?s of the Museum of Funeral Customs, the Academy of Professional Funeral Service Practice, Funeral Directors Service Association of Greater Chicago, Donate Life Illinois, and is a co-founder and Executive Director of the American Society of Embalmers. Her career has included more than five years as designated requester with Gift of Hope Organ Tissue Donor Network where she met with families about organ and tissue donation. She now serves as the Director of Donor Development for Biological Resource Center of Illinois, an Illinois and Arizona based willed body donation to science program.
