Ken Ross, son of Dr. Elisabeth Kübler-Ross, is the founder of the EKR Foundation (2006) and President (2006-2013 & 2018-Present). He also served on the board of the Elisabeth Kübler-Ross Center from 1989-2005. Ken was the principal care provider for his mother in the last 9 years of her life until her passing in 2004.
His responsibilities include handling over 80 publishers of Dr. Kübler-Ross’ work in 41 languages, public relations, copyright & trademark issues, website maintenance, developing international Kübler-Ross chapters, developing strategic partnerships, as well as preserving her archives. While growing up, he traveled with her extensively while on her numerous foreign trips witnessing her lectures and workshops. Ken has lectured on his mother’s legacy for hospices and various conferences in South America, Asia, and Europe. There are several film projects that Ken is currently a consultant on including a major motion picture, a television series and various documentaries, both foreign and domestic.
Joan Marston is based in South Africa and is presently an International Children’s Palliative Care Consultant with PaCCHI – Palliative Care for Children a Humanitarian Imperative; also ICPCN Global Ambassador for Children’s Palliative Care and Director of Education and Development for Sunflower Children’s Hospice in South Africa.
Joan’s background is in Nursing and Social Science and she has 22 years experience in palliative care for children – caring for children when the Executive Director of Bloemfontein Hospice and then founding the Sunflower Children’s Hospice in 1998 in Bloemfontein, South Africa, as well a regional network for life-limited children, the St. Nicholas Bana Pele Network, in 2009. As the national pediatric development manager for the Hospice Palliative Care Association of South Africa, from 2007 – 2010 Joan and her team developed a strategy for a national network of services , promoting the considerable growth of the number of children’s palliative care services for children in South Africa . During that time she was the Project Manager for a program to develop children’s palliative care Beacon centers in Tanzania, Uganda and South Africa.
In 2005 colleagues from 15 countries established the International Children’s Palliative Care Network, with Joan as the first Chairperson from 2005 – 2010, then become the first CEO from 2010- October 2016. The ICPCN now has membership in over 100 countries.
Joan was part of the group that developed the new Guidelines for Persisting Pain in Children, as well as Guidelines for Disclosure in Children, for WHO.
Married to Richard with two adult children living in the UK, and an active member of the Anglican Church, Joan is a Lay Minister in the Cathedral in Bloemfontein; and an Honorary Lay Canon of Blackburn Cathedral in Lancashire, England.
A committed advocate for children’s right to palliative care and pain relief, Joan believes that this can be achieved worldwide when people share knowledge and resources, and work together to expand access to palliative care for all children.
Dr. Rothweiler, daughter of Elisabeth Kübler-Ross MD, is a licensed psychologist, with board certification in neuropsychology and rehabilitation psychology. In addition to conducting neuropsychological evaluations, she provides consultation liaison services, specializing in medical rehabilitation, but also hospital wide, including palliative care and hospice. She serves on the Aspirus Wausau Hospital Bioethics Committee and the Medical Staff Support Committee. She is a member of the American Academy of Clinical Neuropsychology, International Neuropsychological Society, National Academy of Neuropsychology, American Psychological Association, and the Wisconsin Psychological Association. She also serves as board member of Mount Sinai Congregation.
Rodrigo Luz is a Thanatologist and a Palliative & Grief Expert from Brazil. He is a Certified Bereavement Care Provider by Center for Loss and Trauma, from Arizona/USA. He is a Grief Counselor and an Existential Psychotherapist, and he is author the author of the book Contemporary Experiences on Death and Dying: The Legacy of Elisabeth Kübler-Ross to Our Days, published in Portuguese in 2019.
He was trained as a Palliative Care Provider in the Fellowship of Palliative Care, an advanced course run by the Institute of Palliative Medicine, India in partnership with Sanjeevan Palliative Care Project, Pondicherry, India, St Christopher’s Hospice, London, United Kingdom and Bangabandhu Sheikh Mujib Medical University, Bangladesh. This Fellowship Program is conducted at Institute of Palliative Medicine, Calicut, India, at the request of WHO as part of its designation as a WHO Collaborating Centre for Community Participation in Palliative Care and Long-term Care.
He is an active member of several Palliative Care Organizations, participating in the approval of several palliative care laws in several states of his country, acting as a consultant in education programs and the development of palliative care and bereavement care programs, specially to underprivileged populations.
Rodrigo also offers workshops on death, dying, palliative care, and offers community education on issues related to the end of life and grief. Through his classes and lectures, he has already impacted more than thirty thousand students and awakened more than five thousand health professionals to dedicate their lives to palliative care. He is a community leader who has worked with several companies on grief and end-of-life issues, offering support, comfort and emotional and spiritual assistance. As an educator, Rodrigo has offered educational conferences and lectures in several Brazilian states, inspiring hundreds of people to the needs of critically ill patients and their families.
Rodrigo and his team coordinate the training on Thanatology and Palliative Care of the Elisabeth Kübler-Ross Foundation in Brazil along with several social projects of the foundation in Rio de Janeiro and throughout Brazil. He and his team coordinate seminars on death and dying, interviewing patients facing death, using the same model created by Dr. Elisabeth Kübler-Ross in the 1960s. He also offers education and support through various support programs in Brazil, offering help to bereaved people from diverse underserved communities, such as the LGBT + population, men in grief, homeless people, black people, among other groups. He is recognized for his advocacy for human rights and social justice in the field of palliative care in Brazil. In addition, he offers support to several palliative care programs in Brazil and throughout Latin America.
He’s part of the Compassionate Communities project and coordinates several palliative and compassionate care actions with unprivileged populations, in the Rocinha favela, within the city of Rio de Janeiro. He’s the CEO of the Elisabeth Kübler-Ross Foundation Brazil and the Director of Education of the Elisabeth Kübler-Ross Foundation USA/Global.
Dianne Gray is Chief Innovation and Patient Advocacy Officer of Acclivity Health Solutions, a tech company that creates true connected communities while utilizing AI & machine learning to generate analytics that helps clinicians ensure that seriously ill patients receive the right care at the right time.
Dianne is also CEO of Hospice and Healthcare Communications and is a nationally recognized speaker, award winning writer/journalist, film producer, educator and project director. Dianne is also a passionate advocate for improved communications and care for seriously ill patients of all ages and is especially concerned about the welfare of seriously ill, dying and grieving children around the world.
In addition to being an 11 year board member and past-President of the Elisabeth Kübler-Ross Foundation, Dianne is also Global Ambassador for the International Children’s Palliative Care Network and was previously on NHPCO’s Pediatric Leadership Council and the American Academy of Pediatrics SOHPM. Over the past twenty years, she has founded four non-profit organizations, each focused on improving life for seriously ill children and their families.
Over the past twenty years, she has worked as a Death Doula for thousands of grieving and dying people all over the world and has collaborated with major media partners and hospice professionals to produce a wide array films, books and an album (Liv On) with Olivia Newton-John, Beth Nielsen Chapman and Amy Sky.
Wherever she goes, Dianne still sits beside with the ill and the dying and still sees her family’s ten-year pediatric hospice/palliative care experience with her son, Austin, (who died in February 2005) as the gift of a lifetime.
Stephen R. Connor, Ph.D. is the Executive Director of the London, UK based charity, the Worldwide Hospice Palliative Care Alliance (WHPCA), an alliance of over 350 national and regional hospice and palliative care organizations in over 100 countries worldwide. Dr. Connor has worked continuously in the hospice/palliative care movement since 1975 and has been the CEO of four US hospice programs. After serving for 11 years as vice-president of the National Hospice and Palliative Care Organization (US), he is now focused on palliative care development internationally with the WHPCA and has worked on palliative care globally in over 27 countries including as international palliative care consultant for the Open Society Foundations. He serves on several technical working groups of the World Health Organization (WHO) in Geneva. Connor also serves as Senior Research Scholar to Capital Caring Health in the Washington DC Area.
In addition to being a hospice and association executive, he is a researcher, educator, advocate, and psychotherapist, licensed as a clinical psychologist in California. Dr. Connor’s areas of research interest in palliative care include bereavement, denial, outcome measurement and evidence-based care for the dying. He has chaired the board of the International Work Group on Death, Dying, & Bereavement, is on the Scientific Advisory Board for the National Palliative Care Research Center, and is a member of the board of the Elisabeth Kübler-Ross Foundation and the International
Children’s Palliative Care Network (ICPCN). Dr. Connor is on the editorial board of the Journal of Pain & Symptom Management and has published over 145 peer reviewed journal articles, reviews, & book chapters on issues related to palliative care for patients and their families. He is the author of Hospice: Practice, Pitfalls, and Promise (1998), Hospice and Palliative Care: The Essential Guide (2009 & 2018), and editor of Building Integrated Palliative Care Programs and Services (2017) and the Global Atlas of Palliative Care (2014 & 2020), a WHPCA publication in partnership with the WHO.
Dr. M.R. Rajagopal was born in Trivandrum in Kerala, India and graduated from Trivandrum Medical College. He did his post-graduation in Anesthesiology from All India Institute of Medical Sciences, New Delhi. While working as Professor and Head of Anesthesiology in Calicut Medical College, he with his colleagues founded the Pain and Palliative Care Society in 1003 offering free pain management and palliative care to poor patients. In 1995, this was declared a WHO demonstration project and grew to the present Institute of Palliative Medicine with a network of over 100 palliative care centers in the state of Kerala. This initiative resulted in palliative care reaching about 40% of the needy in Kerala compared to the national average of less than 1%.
Currently, he is the director of the WHO Collaborating Center at Trivandrum Institute of Palliative Sciences and the founder-chairman of “Pallium India”, a trust that he founded to improve access to palliative care in India, focusing on balancing increased coverage with improved quality. His initiative has also led to the development of a Government policy on Palliative Care in the state of Kerala in 2008.
He also works with the WHO Collaborating Center at Pain and Policy Studies Group (PPSG) in Madison-Wisconsin and with the Access to Essential Medicines program of WHO, to remove regulatory barriers in availability of oral morphine for pain relief. Over a 15 year period, this resulted in simplification of narcotic regulations in 17 of India’s 28 states.
Dr. Rajagopal is a life time advisor to the International Association for Hospice and Palliative Care (IAHPC) and is the vice chairman of Asia Pacific Hospice Network (APHN). He is a member of the International Experts’ Committee of the WHO Collaborating Center at Madison-Wisconsin. He is also an Associate faculty member of the Institute of Palliative Medicine at San Diego, USA. He is on the editorial board of several international journals and has authored/edited two textbooks, several book chapters (including Oxford Textbook of Palliative Medicine) and more than 30 publications in scientific journals.
The New York Times (www.nytimes.com/2007/09/11/health/11pain.html) wrote an article which described his work in 2007. In 2008, the International Association for Pain and Chemical Dependency honored him at Philadelphia with the Marie Nyswander Award for his contributions to the field of pain management. In 2010, International Association for Study of Pain (IASP) honored him with its award for excellence in pain management in developing countries, at the World Pain Congress at Montreal. He was also the recipient of the Ranbaxy Science Foundation Award for Public Health of 2012.
Declaration and Call-to-Action on Palliative Care & COVID-19
Witnessing, with the rest of the world, the overwhelming physical, social, emotional and spiritual suffering COVID-19 is inflicting on infected persons and their families globally;
Recognizing that palliative care is aimed at prevention and management of serious health-related suffering;
Observing with great concern that the persons infected with COVID-19 are isolated from their families, and may never see them again;