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Parents and Clinicians as Partners in Research

Logo for the Science of Compassion: Future Directions in End-of-Life and Palliative Care Summit event - Puzzle piece image with couple hugging.

Luncheon Speakers:

Dianne Gray

Dianne Gray

Dianne Gray is the President of Hospice and Healthcare Communications, an international speakers bureau and consulting firm focused on furthering education initiatives and collaborative advocacy projects on all aspects of hospice, end-of-life and palliative care.

Dianne is an accomplished speaker and award winning writer who is also an advocate for U.S. and global pediatric palliative care initiatives. Her presentations include  discussions on the topics of  rare disease, medical ethical decision making, opioid use in pediatrics and physician/family communications. She also speaks on her family's ten year pediatric hospice and palliative care experience with her healthy daughter, Christina, and her son, Austin, who died in February, 2005 as a result of a rare neurodegenerative brain disorder.

She is on the board of the Elisabeth Kubler-Ross Foundation, Children’s Hospice and Pediatric Care Coalition, NHPCO’s ChiPPs Education workgroup,  and has participated in the IPPC (Initiative for Pediatric Palliative Care) and other parent panels nationwide.

Dianne has a degree from Western Carolina University, where she studied Sports Management/Sports Medicine. She was the caregiver of her son who died at age 14 as a result of NBIA Disorders (Neurodegenerative Brain Iron Accumulation Disorders).

Dr. Cynda Hylton Rushton

Cynda Hylton Rushton PhD,RN, FAAN
Professor, Nursing and Pediatrics
Core Faculty, Berman Institute of Bioethics
Program Director, Harriet Lane Compassionate Care

Cynda Hylton Rushton  is a Professor of Nursing, with a joint appointment in the School of Medicine in the department of Pediatrics, at the Johns Hopkins University.  Dr. Rushton is Core Faculty of the Berman Institute of Bioethics and Co-Chair of the Johns Hopkins Hospital’s Ethics Consultation Service.  She also serves as a Clinical Nurse Specialist in Ethics and Program Director of the Harriet Lane Compassionate Care Program at The Johns Hopkins Children’s Center. She received her Master’s of Science in Nursing with specialization as a Pediatric Clinical Nurse Specialist from the Medical University of South Carolina and completed her undergraduate degree in Nursing at the University of Kentucky.   She received a Doctorate in Nursing at the Catholic University of America with a concentration in bioethics. Dr. Rushton is the recipient of two post-doctoral fellowships: Robert Wood Johnson Nurse Executive Fellow (2006-2009) and a Kornfeld Fellowship in end-of-life, ethics, and palliative care in 2000.

She is an international leader in nursing ethics; her seminal work on nurse suffering and moral distress was selected for inclusion in the U.S. Nursing Ethics History project with 25 leading nurse ethicists.  A book chronicling the evolution of nursing ethics in the United States was published by the American Nurses Association in 2008. She has provided leadership in numerous nursing and interdisciplinary organizations including the Board of Directors of the American Society of Law, Medicine, and Ethics, and the American Association of Critical-Care Nurses where she was chair and member of the Ethics Work Group.  She also served on the first Task Force on Standards for Bioethics Consultation.  As a member of the American Nurses Association, she served as a member of the ANA Task Force on the nurses’ role in end of life decisions and the development of the profession’s position statements on key end of life issues.

Dr. Rushton is an internationally recognized expert in ethics and palliative and end-of-life care.  She was appointed by Maryland’s governor as the first Chair of a State Council on Quality Care at the End-of-Life and served from 2002-2008.  Her contributions were recognized by her selection as one of Maryland’s Top 100 Women in 2008 and as one of the American Academy of Nursing’s “Edgerunners”.  She has provided leadership to a variety of national projects focusing on palliative and end-of-life care including the National Nursing Academy on Palliative and End-of-Life Care (Open Society Institute (PDIA), an innovative, experiential interdisciplinary communication training model (HRSA), the Initiative for Pediatric Palliative Care (IPPC) a research, education and quality improvement project and the End of Life Nursing Education Consortium (ELNEC).  Dr. Rushton served as a member of the Institute of Medicine’s Committee on Increasing Organ Donation and as a consultant to the IOM’s project “When Children Die. In 2001, she received the American Association of Critical-Care Nurses Pioneering Spirit Award for her work in advancing palliative care across the life-span.

Dr. Rushton’s scholarship in clinical ethics focuses on moral distress and suffering of clinicians, the ethical issues in family-centered care, pediatric palliative care, advance care planning for children, and conceptual foundations of integrity, respect, trust, and compassion. Dr. Rushton is recognized for her work in developing interdisciplinary educational curricula and models of care. She also has extensive experience in creating clinician-family partnerships whereby families whose children have faced life-threatening illnesses partner with researchers and/or clinicians to improve systems of care, design research and educational initiatives, and improve quality and family satisfaction.  She is a co-founder of the Initiative for Pediatric Palliative Care (IPPC).  Currently she is leading (with Dr. Gail Geller) an international collaboration to improve the lives of children affected by life threatening neuromuscular diseases and a related project, focusing on the ethical issues faced by neuromuscular clinicians.  She is also testing an intervention to reduce moral distress and burnout by cultivating resilience in nurses working in critical care, oncology, and neonatal/pediatrics. She and Dr. Geller recently received a $1 million grant from the National Institutes of Health to extend their work in improving the lives of children with neuromuscular disorders and sickle cell disease by integrating palliative care principles into practice using an innovative educational intervention.


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