A multimillion-rand grant will assist the Department of Oncology at the University of the Free State (UFS) to initiate the implementation of palliative care services in the Free State province and help to improve the quality of life of patients and their families living with a life-threatening disease.
The grant from the Bristol Myers Squibb Foundation (BMSF) has already improved the quality of life for patients living with advanced progressive life-threatening diseases (cancer, renal failure, heart failure, AIDS, lung disease) as well as for their families. Prof Alicia Sherriff, head of the UFS Department of Oncology, and Dr Dalene van Jaarsveld, Lecturer and Medical Specialist in the same department, are project leaders for the grant that UFS administers. The grant is for a period three years.
According to Dr Van Jaarsveld, they have also planned for a 10-bed inpatient facility at the Universitas Academic Complex that will be able to accommodate a family member of patients receiving care in preparation for their down referral for home-based care. This unit will also be used as a training facility for all undergraduate health-care students. The grant will provide staff for a limited period to assist the Free State Department of Health (FSDOF) in preparing to absorb the services. They are currently awaiting commitment from the FSDOH to start with renovation of this unit.
Situation in the Free State
Palliative care, explains Dr Van Jaarsveld, provides a service that improves the quality of life of a patient, and his/her family, diagnosed with a life-limited disease. “It is not only for patients who are terminally ill and should ideally be implemented much earlier in the patient's disease journey. Palliative care is a basic human right,” she says.
“A National Policy Framework and strategy on the implementation on palliative care for South Africa for 2012-2022 was published by National Department of Health. We recognised in 2019 that there was no implementation initiated in the Free State, and no budget allocated to the implementation of this critical service.
“Many patients in the province live with these advanced progressive diseases and experience a very poor quality of life that translates into a poor quality of death with a high symptom-burden and suffering during their last days. Similarly, the family will suffer immensely,” says Dr Van Jaarsveld.
Prof Sherriff says they applied for this international grant to assist with the startup of these structures while the FSDOH is given the opportunity to setup the necessary budget to ensure long-term sustainability of this human right as a health-care service.
In the Free State about 16,000 patients die every year with a high need for palliative care. Dr Van Jaarsveld says of the 15 functioning hospices in 2014 and home-based carers that were offering hospice care in most of the sub-districts in the Free State, there are only four registered hospices remaining. Of these only one has four beds where patients can be admitted. The others provide limited care to a very small area, leaving most of the districts in the Free State without any form of palliative care and support. Most of the other provinces have different levels of palliative-care services available. The grant provides funds to initiate the implementation of this service in the Free State.
They are working closely with the FSDOH on a provincial implementation plan that will eventually, once the grant has ended, be taken forward by the province, says Dr Van Jaarsveld.
Through the grant a project manager, professional nurse and administrative support are employed as part of a core team at Universitas Academic Hospital with a social worker. They have received training in palliative care supported by the grant. This team, together with Dr van Jaarsveld, provides a consultation service at the Universitas Academic Hospital Complex.
“Nearly 700 patients have been referred for palliative care in the past year and have therefore benefited (with their families) from the grant. Another two professional nurses have been employed via the grant as hub managers for the Thabo Mofutsanyane and Lejweleputswa districts. Both are currently doing training in palliative care. Once a patient is seen by the team, a palliative care plan is developed, family meetings are held, and a discharge care plan set in place.
“To ensure continuity of care, the patients are handed over to one of the nurses managing the districts where the patients are from for further follow-up and support. This is sadly not possible in all districts,” says Dr Van Jaarsveld.
With the grant, the palliative care team, in close collaboration with Hospice Bloemfontein, have started with accredited palliative care training for nurses and other health professionals working for the FSDOH in all districts of the province. This will help with down-referral pathways and support for patients from districts without a dedicated palliative care nurse.
Dr Claire Armour Barrett, Head: Research and Development in the School of Clinical Medicine at UFS says this project is critically aligned with the second key tenet of the UFS Vision 130, maximum societal impact with sustainable relationships. Although this project is still in its early phase, almost 700 patients and as many as 2100 family members have been positively affected by this work.
“We believe that we are bringing the UFS closer to the theme of the World Hospice and Palliative Care Day for 2023, Compassionate Communities: Together for Palliative Care. We are actively increasing awareness in communities, advocating for patients and families in need not only through service delivery, but also by education and collaboration. We are stronger together.”
World Hospice and Palliative Care Day is celebrated every year on 14 October.