Remember the spring
Remember the spring: honouring the early pioneers in children’s hospice and palliative care.
Author: Joan Marston RN
“When you drink the waters, remember the spring.”
This is the first phase of a larger study to investigate the origins of the children’s hospice and palliative care movement through the narratives of the early pioneers, and then document the field’s history.
To identify “early” pioneers, include their personal narratives, and highlight their influence on the global development of the field.
Through a literature review; documentation from key individuals and agencies; written questionnaires and interviews with pioneers and present leaders, over a period of 10 months.
Influences commonly identified were Dr Elisabeth Kübler-Ross, Dr Cicely Saunders and Sr. Frances Dominica. Pioneers developed unique and individual programmes that influenced others and later there was a move to network. The study also looked at what influenced the pioneers, who initiated pioneering programmes and where were the early adaptors.
The early pioneers envisioned their programmes long before they were established; had different reasons for their work; and had a willingness to collaborate.
Pioneer, hospice, palliative care, paediatrics, initiators
With sincere gratitude to the True Colours Trust for a grant to carry out a study of the early pioneers and to all who have contributed to the study.
Introduction to the study
“When you drink the waters, remember the spring”. The words of this Chinese proverb remind us that we are working in a field that was originally developed by others. It is so young that many of the early pioneers and visionaries are still alive today – yet sadly the contributions of many have been ignored or forgotten.
This study, carried out over 10 months, aims to document the history of children’s hospice and palliative care through the personal narratives of the early pioneers, wherever possible. “Remember the Spring” is phase one of the study and is focused on the early pioneers. The aim of the whole study is to document the history of children’s hospice and palliative care from the early beginnings to the present day. The method used was through a literature review; review of documentation from organisations; questionnaires sent to the pioneers and to recognized leaders in the field, and personal interviews when possible. There may be other individuals or programmes that this study did not identify as there is little literature on the history of children’s hospice and palliative care as a movement.
Defining a “Pioneer” in the context of Children’s Hospice and Palliative Care (CPC)
The first challenge was to define the concept of a “pioneer” as we uncovered individual programmes and projects that were initiated early on, either for a short period of time, or that provide excellent care to this day, but are not generally seen as influencing country, regional or global development (The word “pioneer” is from the French and means a foot soldier).
For this study the following understanding of terminology was used:
- Pioneer: A person who helps open up, develop or create new ideas or programmes that have influenced the development of the field
- Initiator: Someone who begins or originates a new project
- Secondary Adaptor: Someone who takes the original idea or concept and develops or adapts it to make it more effective within their situation.
The concept of a Spring
If we look at the concept of a spring (from the German “springer” – to vault/jump)- a spring is the result of an underground aquifer being filled to the point that the water overflows onto the land surface. This may then form streams, rivers or lakes.
The build-up “underground”
Where does the history of a movement begin? Is it from the date of the opening of a specific programme; or the pioneer whose vision, energy and commitment led to the establishment of that service? Or does it emerge from a variety of influences that develop and together impact on an individual or individuals to lead the way? What emerged from the interviews was that the concepts that became programmes were envisioned and planned long before the individual programmes were opened.
We build on foundations we did not lay,
We warm ourselves by fires we did not light,
We sit in the shade of trees we did not plant,
We drink from wells we did not dig,
We profit from persons we did not know,
This is as it should be.
Together we are more than any one person could be,
Together we can build across the generations,
Together we can renew our hope and faith in the life that is yet to unfold,
Together we can heed the call to a ministry of care and justice,
We are ever bound in community,
May it always be so.
Rev. Peter Raible (1930-2004)
UU Minister, Seattle, WA
The word paediatrics is a combination of two Greek words – pais meaning child and iatros – a doctor or healer i.e. a healer of children. Paediatrics is a relatively new medical field yet looking back into the ancient world we can see that children have always been provided with medical care even when childhood mortality was very high. References in the Ebers Papyrus of c1550 BC and the relatively more recent works of Hippocrates in 400 BC identify treatments for conditions we would consider life-limiting or life-threatening.
From ancient times children were cared for at home, by mothers or other relatives, and it was only in the 1802 with the opening of the first hospital for children in Paris, the Hôpital des Enfants Malades(the Hospital for Sick Children), that children were formally acknowledged as having health conditions and needs distinct from adults.
From France the concept of separate paediatric hospitals spread across Europe to Germany, Italy, Poland and Austria, Russia and England.
Once again in Paris, in 1893, Madame Henry, Midwife –in-Chief of the Port Royale programme for sick newborns, recognised that these babies required special care and set up separate units called “Pouponnieres” to provide scientific care and give these babies the best possible chance to be sent home.
Then within the 20th Century the idea that children had rights equal to and separate from adults were laid down in two important Human Rights declarations – in 1924 the League of Nations “Geneva Declaration on the Rights of the Child” and in 1948 the United Nations “Universal Declaration of Human Rights” which stated in Article 25 that children were entitled to special care and consideration. These laid the groundwork for the 1989 “United Nations Convention on the Rights of the Child” which is recognised by almost every country as setting down the inalienable rights of every child – including the right to the best possible health care.
Opening in the ground
In the 1960’s the work of two visionary pioneers influenced the way people viewed care of the dying and promoted the development of the modern hospice movement – Dr Cicely Saunders and Dr Elisabeth Kübler-Ross. They both saw the patient as the centre of care and recognized their holistic needs. In the words of Dr Colin Murray-Parkes they were “the right people at the right time.”
The influence of Dr Cicely Saunders, especially with the opening of St Christopher’s Hospice in south London, England and her visit to the USA, led to Florence Wald, previously Dean of Mental Health and Psychiatric Nursing at Yale University, opening Cincinnati Hospice in 1971, the first Hospice in the United States. This she opened with the support of two paediatricians. Together, Dr Elisabeth Kübler-Ross, Dr Saunders and Florence Wald created the environment for the concept of a children’s hospice movement to develop in both the United Kingdom and the United States.
Dr Saunders is an interesting figure in her influence on the development of children’s hospice care. There is no doubt that the concept of the modern hospice influenced the vision of a similar movement for children, yet she refused to support three leading children’s hospice palliative care pioneers when approached. (Dominica, Goldman, Hain personal memories) The reason for that is at present uncertain.
Most of those completing questionnaires, or interviewed, also stated that they were influenced in their thinking by the work of Elisabeth Kübler-Ross, as introduced in “On Death and Dying” published in 1969. (Kübler-Ross 1969)
The breakthrough years
The decade of the 1970s became known as the “pivot of change”. It was in this decade that the children’s hospice movement began to develop as an entity separate from the general hospice movement and a great deal of the early development was in the United States.
Prof Ida Martinson, of the department of Nursing, University of Minnesota, realised after caring for her dying father-in-law at home, that children could benefit from home care. In 1972 she cared for Eric, her first home care patient, and then together with other nurses, cared for a further eight children at home. They collected data that led to them writing up this pilot study and receiving a four-year grant from the National Cancer Institute for research into Home Care of the Dying Child. Prof Martinson herself feels her greatest contribution was in the vast amount of documentation she provided to show the feasibility and desirability of children dying at home and the education that came from sharing that information (Martinson personal information).
Edmarc Children’s Hospice was set up in Suffolk, Virginia, in 1977 by Dr W. Allan and Mrs Joan Hogge whose son, Marcus, was dying from a rare, progressive and terminal neurological disease. They approached their Presbyterian Minister, the Rev Edward Page Jr who was also seriously ill with cancer, for support. (He died in 1979.)
Dr and Mrs Hogge and his wife realised early in their six-year-old son Marcus’ diagnosis that there was no support for them in caring for their son. Rev Page asked for help for Marcus from his congregation and it was from this development that Edmarc Children’s Hospice was born in 1978. The logo of Edmarc shows Edward and Marcus holding hands and was designed by the children of the congregation.
“The death of a child poignantly underlines the impact of social and cultural factors on the way that we die and the way that we permit others to die.” (Bluebond-Langner 1978)
Dr L. Joseph Butterfield set up a neonatal hospice programme in Denver in 1979 but it is uncertain as to how long this was active and the present Head of Department at the Denver Hospital cannot find any record of this. However, it was published in two documents that could be found.
Ann Armstrong-Dailey realised that there were few hospices providing care for children so in 1983 she established Children’s Hospice International (CHI) with a vision that no parent should have to choose between hospice and curative care; and that hospice care should be so entrenched into paediatrics that it became an integral part of paediatric care. (Armstrong-Dailey 1983 and personal information 2018).
In 1983, beginning in San Francisco, Ann initiated a series of 24 Annual International CHI conferences with the aim of bringing together all involved in children’s hospice and palliative care.
Her advocacy with decision-makers influenced policy in the USA and led to a number of states implementing the ChiPACC program (CHI Program for All-Inclusive Coordinated Care 1999) through Medicaid and Children’s Health Insurance. Ann also highlighted the voice of the child and family through her support for the young philosopher and poet, Mattie J. Stepanek, and his mother Jenni.
“Palliative care no longer means helping children die well, it means helping children and their families to live well and then, when the time is certain, to help them die gently.”
Mattie J Stepanek (1990 – 2004)
St Mary’s Hospital in New York opened the first US-based department for palliative care for children in 1984. In the United Kingdom, development to support children and families facing cancer in childhood began. In 1968 Sylvia Darley established Sargent Cancer Care for Children in memory of the great conductor Sir Malcolm Sargent; and in 1976 Robert Woodward set up the CLIC (Cancer and Leukaemia in Childhood) Trust in memory of his young son Robert who died of a neuroblastoma. In 2005 these merged to form CLIC-Sargent.
The children’s hospice movement, development in the UK and later globally was influenced by Sr Frances Dominica OBE whose vision and tireless advocacy, supported by her Order, the parents of Helen Worswick, Prof David Baum, Dr Allan Stein and many others, led to the establishment of the first respite home and hospice centre for children, Helen House in Oxford in 1982. Sr Frances RN a children’s nurse and Anglican nun met the parents of Helen Worswick, a young girl with a benign brain tumour that had left her totally dependent on 24-hour care.
Realising that there must be many more children like Helen through her support to Helen’s parents, Richard and Jacqueline, the idea of a hospice house for children became a reality and has led to many other children’s hospice units being built across the world (Worswick 1993). This despite Dr Cicely Saunders advising her “Don’t do it!” (Dominica 2017 personal correspondence with the author)
Sr Frances Dominica, together with Prof David Baum and Robert Woodward led an assessment of existing services for children in 1977, which in turn led to the first national association for children with life-limiting conditions in 1988, known as ACT, whose publications and Pathways influenced global development.
A different experience of caring for children and supporting families in their homes led to Bernadette Cleary OBE establishing the Rainbow Trust in 1986 which continues to provide support both within hospitals and in many communities. (Cleary 2017)
Reported in interviews by many of today’s CPC leaders as their mentor and role-model Dr Ann Goldman realised the need for a hospital-based palliative care team for children and was able to establish this at Great Ormond Street Hospital for Children in 1986. Dr Goldman has taught many CPC professionals over the years, published extensively and as the co-editor of the Oxford Textbook of Palliative care for Children (1st and 2nd Editions) and remains active in the field both teaching and as the Patron of the conferences run by the Maruzza Foundation in Rome. (Goldman 1918 personal narrative)
Charles A. Corr PhD established the first US accredited College Course on Children and Dying in 1984 and continues to educate through many publications and his co-editorship of the very informative CHiPPS e-Journal (Children’s Project of Hospice/Palliative Services, part of the National Hospice and Palliative care Organisation US).
Dr Richard Hain, from very early on in his training as a medical student, realised the need for developing educational qualifications in the field of paediatric palliative care. Equipping himself through qualifying in pharmacology, palliative medicine, paediatrics and paediatric oncology, he was supported by Prof/Baroness Ilora Finley and Prof Alan Kraft to develop and present the paediatric palliative care course at Cardiff University in 2001. Professionals from many different countries came to Cardiff to qualify in this very new academic field and his bi-annual Cardiff Conferences at the University are universally recognised for their academic excellence.
Dr Hain is also the co-editor of the Oxford Textbook of Palliative Care for Children (1st, 2nd and 3rd Editions) together with Dr Ann Goldman and Dr Stephen Liben, a highly respected Canadian pioneer who began a CPC programme in Montreal in 1995.
One of the most influential and far-reaching developments for nurses has been Prof Betty Ferrel’s ELNEC (End of Life Nursing Education Consortium) which provides innovative education for nurses in many countries.
Another major influence on the development of paediatric palliative care has been EPEC (Education in Palliative and End-of-life Care) – Pediatrics: Funded from 2010-2017 by a US$ 1.6 million grant of the US National Institute of Health/National Cancer Institute, EPEC-Pediatrics has now developed into the most comprehensive pediatric palliative care (PPC) curriculum world-wide. The interactive contents of the curriculum are designed to address the needs of children with cancer and other serious illness, their families, and their pediatric clinicians. Dr. Stefan Friedrichsdorf (Principal Investigator), Dr. Joanne Wolfe, Stacy Remke, LiCSW, Dr. Joshua Hauser, and Dr. Justin Baker lead this initiative and collaborate with a team of 35 national and international leaders in the field of pediatric pain medicine and palliative care.
Another major influence was the development of ICPCNs e-learning programme, led by Prof Julia Downing, later taken over by Alex Daniels. Courses on CPC were made available free of charge in a wide range of languages. To date over 6,000 individuals from 170 countries have undertaken the courses.
Prof Susan Fowler-Kerry and Dr Pat McGrath developed the WHO Guidelines on Cancer Pain Relief and Palliative Care for Children in 1998.
Early innovative guidelines that have been developed, translated and given guidance to many are the Basic Symptom Control in Paediatric Palliative Care guidelines developed by Dr Satbir Jassal of Rainbow’s Children’s Hospice in the UK and first published in 1999. The 10th edition of which was published in 2022 by Together for Short Lives
From 1993 with its establishment as the Vatican Foundation Maruzza Lefebvre D’Ovidio, had special regard for children, and appointed Dr Paolo Cornaglia Ferraris of the Bambino Gesù Hospital in Rome. Dr Cornaglia Ferris also provided home care for children and designed “Progetto Bambino” that led to the later Italian Law for palliative care including special reference to children.
The Maruzza Foundation, led by Silvia Lefebvre D’Ovidio has been a powerful advocacy voice for children both throughout Italy and on the international scene. It was established by Antonio and Eugenia Lefebvre D’Ovidio on the 7th October 1999, after losing their beloved daughter Maruzza to cancer aged just forty years old. The foundation initiated the biennial “Paediatric Palliative Care; a Global Gathering” conferences in Rome in 2012, with the 5th Maruzza International Congress on Paediatric Palliative Care taking place in Rome in May 2022.
Early development in other regions
As early as 1985 Very Special Kids was opened in Malvern, Australia by parents as the first children’s hospice in the region.
In 1990 Joan Marston began providing hospice care for children in Bloemfontein, South Africa. She went on to set up St Nicholas (now Sunflower) Children’s Hospice in 1998; developed the first national Paediatric Palliative Care portfolio for the Hospice Palliative Care Association of South Africa which led children’s hospice programmes integrated into 60 hospices; initiated the first CPC curriculum; developed Beacon Centres for CPC in South Africa, Tanzania and Uganda, leading to the first Diploma in Paediatric Palliative Care in Africa being developed by Mildmay, Uganda; as well as conceptualising development projects in Malawi and India.
Together with Barbara Gelb (Children’s Hospice UK), Lizzie Chambers (ACT) and Peter Ellis (Richard House Children’s Hospice) she initiated the International Children’s Palliative Care Network (ICPCN) in 2005, the first global CPC network.
Alongside this Ruth Sims and Dr Veronica Moss established the Mildmay Centre, Uganda in 1998, followed by Jajja’’s Home specifically for children. The Centre provided palliative care for both children and adults, and was the first specialist palliative care centres for children in Uganda and the surrounding region.
Dr Lisbeth Quesada-Tristan is the pioneer in Latin America, setting up the Hospital of San Jose Paediatric Pain and Palliative Care Clinic in San Jose, Costa Rica in 1990. Her Charter on the Rights of the Dying Child is possibly the first such Charter, with later Charters developed by ACT (now Together for Short Lives), the ICPCN and the Fondazione Maruzza.
In 1994 Dr Tomasz Dangel opened the Warsaw Hospice for Children and Anna Gorchakova set up the Belarusian Children’s Hospice.
Both have pioneered education and development in the region. Dr Dangel welcomed many international professionals for clinical placements and ran international educational workshops within the region.
In the early 1990’s medical and mental health professionals in Greece began studying the needs of children with life-limiting and life-threatening illnesses as well as the bereavement needs of families. This led to the founding of Merimna – a non- profit organisation to support children whose lives had been affected by life-threatening illness or the death of a loved one. Prof Danai Papadatou, President of Merimna was a founding member and Chair of the Board of Directors of Merimna.
The International Children’s Palliative Care Network (ICPCN)
As a result of a growing willingness and desire to network and learn from each other’s programmes, when the then Global Alliance for Palliative Care (now the Worldwide Hospice Palliative Care Alliance) held a two day workshop prior to the Asia-Pacific Hospice Network Conference in Seoul, South Korea in March 2005, Barbara Gelb (then chief executive of Children’s Hospices UK) and Joan Marston (then Advocacy Officer for the Hospice Palliative Care Association of South Africa) persuaded the organisers to allow two sessions on palliative care for children, which were enthusiastically attended by representatives from fifteen countries. A decision was taken to work together to set up an international network and to make opportunities for sharing experiences and knowledge. Ensuring the voice of the child was heard as part of this development was written into the ICPCN Founding Statement of Korea which was read out and signed at the end of the Conference.
A small Steering Committee was established while in Seoul in September 2005 and within three months other known leaders in the field were invited to join this committee. Joan Marston of South Africa was elected as the first Chair and Barbara Gelb and Lizzie Chambers (then chief executive of ACT) as co vice–chairs. Help the Hospices (now Hospice UK) formed the secretariat and the fledgling organisation was hosted by WHPCA. The first strategic plan was developed in September 2005 and his included all the areas of focus that the ICPCN has developed – advocacy, education, research, building a network through communication, and developing a fund to support this work. The ICPCN took a big step forward in 2007 with a logo, a website and then the appointment of Sue Boucher as the Information Officer and the organisation’s only employee for three years.
In 2011 ICPCN registered as an independent organisation in the United Kingdom and South Africa with a formal Board, chaired by Barbara Gelb and Lizzie Chambers with Joan Marston as the first Chief Executive who then appointed Prof Julia Downing as the Director of Education and Research, Busi Nkosi as Director of Advocacy, Barbara Steel as Administrative Officer and continuing with Sue Boucher as Director of Communications. From there the ICPCN grew into the international leader in the field of children’s palliative care with membership in over 120 countries; contributing to global initiatives; leading advocacy initiatives for children and educating in many countries through face-to-face workshops and the important e-learning modules in different world languages.
A Charter on the Rights of every child to palliative care was developed and translated into 24 languages; a global day was launched “Hats on for CPC” on the second Friday of October each year and has become an enjoyable way to raise awareness in many countries. Several other awareness initiatives were set up – the NOW campaign and the request for people to do “Just One Thing” for children’s palliative care.
Biennial international conferences were established beginning in Mumbai in 2014, followed by Buenos Aires in 2016 and Durban in 2018.
An ongoing mapping project allows the ICPCN to track development across the world and identify countries. For development.
The influence of donors
Without the support of the Diana, Princess of Wales Memorial Fund with Olivia Dix and Laura Ross-Gakava; the Open Society Initiative (Foundations) with Mary Callaway and Dr Kathleen Foley and then the True Colours Trust founded and led by Lucy Sainsbury with support from Jo Ecclestone–Ford; together with a few other funders such as the Monument Trust, the development of the field would not have been possible. The donors have been informed and wise partners in the development of children’s palliative care globally.
Many and varied factors have influenced the development of children’s hospice and palliative care. However, without the vision, energy, dedication and commitment of these early pioneers we would not have grown into the present global movement.
Sr Frances once wrote that we the professionals are the pupils; the children and families the teachers. It is a Master Class. (Dominica 1993)
“While we are living in the present, we must celebrate life every day, knowing that we are becoming history with every work, every action, every deed.”
Mattie Stepanek (1990 – 2004)
- Bluebond-Langner,M. The private worlds of dying children. 1978. Princeton, New Jersey. Princeton University Press.
- Baum,D; Sr Frances Dominica; Woodward,R. Editors. 1990. Listen, my child has got a lot of living to do.Oxford. OUP.
- Goldman, A; Hain,R; Liben,S. Editors. 2006. Oxford textbook of palliative care for children. Oxford. OUP
- Kübler-Ross,E. 1969.On death and dying. New York. Macmillan Publishing Company.
- Martinson,I. Home care of the dying child. 1976. New York.
- Appleton Century Crafts.
- Worswick,J. A House called Helen. 2nd Edition. 2000. Oxford. OUP.
Ann Armstrong-Dailey, Paolo Cornaglia Ferraris, Bernadette Cleary OBE, Charles A. Corr, Sr Frances Dominica OBE, Silvia Lefebvre D’Ovidio, Richard Hain, Allan and Joan Hogge, Anna Gorchakova, Ann Goldman, Stephen Liben, Ida Martinson, Joan Marston, Danai Papadatou, Lisbeth Quesada Tristan.