A most successful day-long workshop on perinatal palliative care was held at the Royal Hospital in Pietermaritzburg. The workshop was organised by PatchSA in collaboration with The Nurture Hub and Umduduzi Hospice Care for Children.
Knowledgeable and experienced presenters
The line-up of presenters and panelists for the workshop was most impressive and included several members of a team who would be expected to be involved in the care of a mother, father, baby and family members when a life-threatening or life-limiting diagnosis for the baby had been made. Presenters and panelists on the day included:
- Sr Tracy Rawlins (Education & Training Manager – PatchSA)
- Sue Boucher (Programme Manager – PatchSA)
- Dr Julia Ambler (Children’s Palliative Care Doctor – Umduduzi)
- Tracey Brand (Medical Social Worker – Umduduzi)
- Carmen Levey (Physiotherapist – The Nurture Hub)
- Dr Mama-Asu Peprah (OB/Gyn – The Nurture Hub)
- Dr Trudy Martin (Neonatologist – Greys Hospital)
- Nokulinda Mkhize (Traditional Healer/Author)
- Dr Serantha Foolchand (Maternal Fetal-Medical Specialist)
- Sinead Cameron-Mackintosh (Genetic Counselor)
Rich programme content
The workshop was fully subscribed to the capacity of the venue with 56 people in attendance, some having travelled from as far afield as Gauteng, Newcastle and Richard’s Bay. The rich programme for the day included the following relevant topics:
- A multi-disciplinary approach to perinatal and neonatal care
- Roles of those involved in care & support on the perinatal journey
- Compassionate communication when sharing significant news
- Providing palliative care when a baby is at high risk of dying
- Decision making, ethics and advance care planning
- Cultural and spiritual sensitivity in perinatal palliative care
- Creating a supportive environment in the NICU
- Providing adequate pain relief for a baby
- Exploring grief and the value of memory making
After a warm welcome to all attendees a video was shown in which two South African families shared their experiences of receiving perinatal palliative care post the birth of a child diagnosed with a life-limiting illness. This video was very helpful in putting the day in context and reminding all present that our purpose is to improve the care provided to families such as these. Dr Julia Ambler, co-founder and Medical Director of Umduduzi Hospice Care for Children, then provided a comprehensive overview of the principles underpinning perinatal palliative care. Her talk covered topics such as shared and ethical decision making, as well as the importance of parallel and advance care planning. Tracy Rawlins, PatchSA’s Education and Training Manager, followed this by describing the various roles of team members on the perinatal palliative care journey and the vital importance of a robust system of referrals to provide adequate support. In groups the participants were asked to discuss their own challenges in delivering perinatal palliative care and to reframe these challenges as questions to be put to a panel later in the day.
After a tea break, Dr Mama-Aso Peprah, an OB/GYN from The Nurture Hub, spoke on the need for more compassionate and truthful communication with patients and their families. This was followed by an inspiring and insightful presentation by author and Traditional Healer, Nokulinda Mkhize, on the importance of cultural competency and the need for greater awareness of and respect for the spiritual needs of our patients and their families. Tracy Brand, medical social worker, co-founder and Director of Umduduzi, provided guidance on offering bereavement support to families.
A more clinical approach to care was outlined by Dr Trudy Martin, Clinical Head of the NICU (Neonatal Intensive Care Unit) at Grey’s Hospital, who delivered an excellent presentation on how the NICU can be made a more supportive environment for families. She also gave guidance on providing effective pain relief and symptom management to babies, when necessary.
Panel discussion and case study
After a delicious lunch that had been prepared by the wonderful chef and kitchen staff from Royal Hospital, a lively panel discussion was led by Dr Julia Ambler, during which panelists who would be likely to have contact with parents and the affected baby spoke of their roles as members of the perinatal palliative care team. They were also asked to answer questions that had been put forward from the morning’s groupwork activity. This was followed by Tracy Rawlins and Tracy Brand talking about the significance of memory making and showing some examples of how this can be achieved, even under the most difficult circumstances and low resourced settings.
To bring the information together in a practical manner and under the guidance of Dr Trudy Martin, groups worked through a case study, where they were asked to outline how they would respond to the specific and holistic needs of a mother and family on the death of their child shortly after birth. Group representatives provided feedback on the deliberations made by their groups.
The workshop was enormously successful with feedback from those who attended being overwhelmingly positive. One participant wrote, “ A wonderful day of networking, and learning new information. Well organised, well managed according to time, good choice of speakers. The catering was excellent too.”
We believe that there is an overwhelming need for those who work with expecting parents and with their babies who have been given a life-threatening or life-limiting diagnosis to become more familiar with the principles of perinatal palliative care. In the coming year we have plans to take this workshop to more centres around the country. Should you wish to be informed of these events and those similar to this, we suggest you sign up to receive our Newsletter.
Launch of our online course based on the PatchSA /Bettercare book on Perinatal Palliative Care
The event served as the official launch of our Patch Academy online course on Neonatal and Perinatal Palliative Care which will be available at the end of November. This course is based on our most recent Bettercare book Perinatal Palliative Care: A guide to supporting families when a baby is at high risk of dying before or shortly after birth. This book is available to purchase from our website or to read on the Bettercare website.