The woman who led the development of the first training course for paediatric palliative care in South Africa not only influenced palliative care in the country, but across the world as well.
With Hospice Week celebrated from 1 to 7 May and International Nurses Day celebrated today (12/05), Bloem News spoke to one of the pioneers in the field.
Joan Marston is known for developing and promoting the Sunflower Children’s Hospice at the National Hospital.
More recently, she spent 21 months at the Siesta Retirement Village – first on a temporary basis, but soon as hands-on nurse and trainer to a group of young care workers of Solidariteit Helpende Hand.
She is currently visiting family overseas.
“It is wonderful to have some time off after the busy time at Siesta,” she says.
“It is also special to see my family again after almost three years.”
Joan will present several seminars during her stay in Jersey in the Channel Islands.
She became involved with nursing in 1989 when she started as volunteer nurse for Bloemfontein Hospice. She later acted as hospice nurse and executive director.
In those days, no training in palliative care was available.
She was one of the leaders to develop the first short course in palliative nursing for the South African Nursing Council.
“During the HIV/Aids pandemic we also developed the first training course for community care workers for districts in the Free State and Northern Cape.”
She also completed training in a number of countries, including Wales and America.
In 2005 she founded the International Children’s Palliative Care Network and established a free e-learning training platform with paediatric palliative care courses in various languages.
“These days I am an honorary lecturer in paediatric palliative care at the University of Cape Town and an honorary consultant in my field at the Kharkiv National Medical University in Ukraine.”
She is also an advisor to the African Palliative Care Association and vice-president of the international Elisabeth Kübler-Ross Foundation.
Joan says palliative care grew tremendously during the time of Aids, with a great deal of international funding driving the expansion.
When the funding stopped, however, palliative care declined.
“We are now seeing an increased interest in palliative care, but hospices are still struggling to maintain their programmes.
“We have a national policy, and we are developing national palliative care guidelines and a national paediatric palliative care guide. I lead the group working on psycho-social and spirtual issues for children.”
Joan has been privileged enough to travel to 55 countries to train care workers, speak at conferences and help with the development of the field.
She first visited Ukraine in 2013 to help advocate for support and funding for paediatric palliative care along with the Ministry of Health and the Children’s Rights Commissioner. She has kept in close contact with the people ever since.
“I have been back four times to assist with training and speak at national conferences in Kyiv, Kharkiv, Ivano-Frankivsk and Lviv.
“I was also due to speak at one this year, but the war put a stop to that.”
She says her Ukrainian friends did so much to develop children’s palliative care programmes across the country, and despite the terror facing them every day, they remain there to provide care.
“Together with my global connections, I have been able to set up some phychological support, a funding appeal and statements of support.
“I also contributed an article on the value of death and suffering during war.”
She will present several webinars throughout the month and attend a meeting in Rome on 27 May.
After a lifetime of working mostly with children, it was a huge challenge to change her mindset to work with the elderly at Siesta.
“I have learned so much – the way they cope so graciously with the frailties that come with getting older, the sadness of dementia and the new challenges of coping with Covid-19,” she says.
“It was also a delight to open the Bloemfontein Hospice Patient Unit in Siesta so that palliative care can be provided more intensely.”
She is an ambassador for Bloemfontein, helping people around the world to face the reality of death with grace and peace.
