Paediatric Palliative Care

Programme Objectives 1. To improve pain control and palliative care in hospitalized children 2. To improve the ability of the primary care team in hospitals to address pain and palliative care issues in their patients

Description

Bigshoes offers a consultation service to the tertiary level hospitals in each of the 3 provinces. This service consists of palliative/paediatric specialists, medical officers, nurses, social workers, social auxiliary workers and surrogate parents. This team provides active care for the patient and makes use of a holistic perspective encompassing physical, emotional, social and spiritual aspects of care (in line with the World Health Organisation’s definition of PPC). Children who have been diagnosed by the hospital with life-limiting or life threatening conditions are referred to our team and they work together to support hospital, patient and family through the duration of the condition.

Paediatric palliative care (PPC) is defined by World Health Organisation as “an active and total approach to care, embracing physical, emotional, social and spiritual elements. It focuses on quality of life for the child and support for the family and includes the management of distressing symptoms, provision of respite and care through death and bereavement. It is provided for children for whom curative treatment is no longer the main focus of care and may extend over many years”. The Bigshoes Foundation provides a palliative care consultative service for two hospitals: the Chris Hani Baragwanath hospital in Soweto and the Coronation hospital on the West Rand of Johannesburg. Additionally, our team of medical doctors also help to run Hospice in Soweto.

The activities include:

• The provision of a consultative multi-disciplinary paediatric palliative care service:
  • Provide pain management
  • Symptom control
  • Facilitating breaking bad news and ensuring clear and sensitive communication
  • Provide medical counseling
  • Assist with case specific ethical decision making
  • Provide supportive counseling to child and family
  • Offer bereavement support groups and memorial services
  • Assistance with placements
  • Home visits and assessments
• The provision of continuing medical education sessions in pain management and palliative care in these facilities (doctors, nurses, social workers and allied workers)
  • Provide consultation on relevant cases
  • Be a part of hospital daily post-intake round
  • Hold PPC ward rounds and invite relevant medical professionals
  • Be a part of registrar rounds once a month
• Provision of debriefing for hospital staff
  • Mindfulness based stress reduction programmes and groups
  • Supporting staff in the process of palliation and withdrawal of treatment Accessing local networks and resources Membership on local health and hospice forums to facilitate the most beneficial use and sharing of resources.

Impact

The children report lower levels of pain while in the hospital and higher levels of comfort. The hospital staff have been shown to prescribe more adequate pain medication for patients since the Bigshoes team has given input. Families have expressed extreme gratitude for the ongoing support no matter the prognosis. Bigshoes is able to provide and facilitate a continuation of care beyond the hospital.

Bigshoes is the pioneer of the field of Paediatric Palliative care in South Africa within a hospital setting. This means that since the conception of this project in Gauteng, none of the children who have benefited from our services would have received specialist palliative care without the work of Bigshoes. Due to the necessity of this service, Bigshoes has managed to begin similar services in Durban and Cape Town hospitals with wonderful results. Bigshoes has also played a role in offering training on Paediatric Palliative care and has worked closely with the HPCA in establishing it as a recognised medical discipline in South Africa.