Caring for people with life-threatening illnesses is a key part of working in health care. While South Africa launched the National Policy Framework and Strategy for Palliative Care 2017–2022, integrating palliative care into existing public health care is in its infancy. Most patients in the Western Cape have poor access to palliative care, an inequality felt hardest by those living in rural areas.
In 2018, with district wide institutional managerial support, a palliative care model for rural areas was initiated in the Western Cape. The process involved setting up hospital- and community-based multi-professional palliative care teams, initiating weekly palliative care ward rounds, training champions in palliative care and raising awareness of palliative care and its principles.
Establishing regular ward rounds has changed the way patients needing palliative care are managed, particularly in challenging the mindsets of specialist departments. The emergence of the multi-professional team listening and planning together at the patient’s bedside has restored some of the dignity and ethos of patient-centred care, which is a core principle of the provincial Health Care 2030 vision.
In a short time period, we have managed to build a service that aims to improve care for palliative patients in rural areas. Its strength lies in a multi-professional patient-centred approach and improved communication between different components of the health system, providing a more seamless service that supports patients when they need it most.
The World Health Organization (WHO) estimates that each year 40 million people worldwide need palliative care, with only 14% receiving it.
Palliative care is:
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The 2014 resolution of the World Health Assembly (WHA) acknowledged that:
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In 2015, South Africa ranked 34th in the Economists ‘Quality of Death Index’, the highest-ranking African country, a reflection that pockets of excellence exist.
Apart from AIDS and tuberculosis, South Africa has a growing number of people living with chronic non-communicable diseases, causing increasing numbers of people to live with life-limiting illnesses.
South Africa launched the National Policy Framework and Strategy for Palliative Care (NPFSPC) 2017–2022 in response to the WHA’s Resolution 67.19 (of which South Africa is a co-sponsor).
The Western Cape Province has several metropolitan hospital-based palliative care services.
This article describes the innovative development and implementation of a palliative care model in a rural district of South Africa. The model focuses on successes and lessons learnt from creating multi-professional palliative care teams at a regional and district hospital, with the aim to showcase a replicable solution to improve palliative care for all patients.
The project initially focussed on George hospital, a 272-bed regional referral hospital. Eight clinical departments care for 160 000 outpatients annually reach out to 10 district hospitals and train Cape Town and Stellenbosch University students in the health sciences. It services the George sub-district and is the referral centre for the Garden Route and Central Karoo districts, with a combined population of 685 000 people.
In 2018, the hospital management supported the appointment of a sessional palliative care specialist. The provincial chief director of rural health and the local district manager requested a situational analysis to determine existing services and role players, and in August 2018, the first stakeholder meeting was convened.
Through an existing 5-year collaboration with the ‘Improving Global Health (IGH) through Leadership Development’ programme in the United Kingdom, as part of a collaborative leadership development initiative, young health professionals (fellows) have rotated 6-monthly, addressing locally identified quality improvement projects. A fellow was allocated to the Palliative Care Initiative and worked with the head of family medicine and the sessional palliative care specialist to develop a rural palliative care model. Several steps were followed, including:
setting up a hospital multi-professional palliative care team and initiating weekly palliative care ward rounds
creating resources and monitoring and evaluation
setting up a community multi-professional team with improved communication between the hospital and the sub-district
training champions in palliative care
awareness of palliative care and its principles.
A multi-professional team was created consisting of a palliative care trained family medicine doctor, medical officer, physiotherapist, psychologist and social worker. The ward doctor and nurse looking after the patient are encouraged to attend with the team. Together they do a weekly ward round of identified patients, using the internationally recognised SPICT® tool (see
A Palliative Care Plan was developed as a standardised tool for the hospital and sub-district (see
For monitoring and evaluation of the ward rounds, we used Epicollect5®, a free, mobile web-based application. The team utilised this application to collect data in real time during ward rounds on efficacy and efficiency. Preliminary data for 16 ward rounds showed that the average duration has been 98 min per round, with 62 patients consulted. The most common conditions seen were cancer (29%), cerebrovascular incidents (14%), AIDS (11%), renal failure (11%), tuberculosis (7%) and chronic obstructive pulmonary disease (7%). The average age of referred adult patients was 52 years, with 31% of patients being under 35 years old. One-third of these patients had complications from AIDS.
Upon discharge, patients leave the hospital with their palliative care plan. Referrals reach the community via a generic email address which is checked by the community multi-professional team. This team is based at the sub-district hospital. While this is a tuberculosis hospital, functionally it also serves as the district hospital, in terms of its staff component and connectivity with the home-based care services. In other sub-districts, this role is fulfilled by the district hospital. The multi-professional team meets weekly, with representatives from each of the Community Day Centres, the social worker and palliative care trained physiotherapist, doctor and nurse. Referrals are made to the team from the hospital, clinics and community health workers, who visit homes in the surrounding areas. The team keeps a database of palliative patients in the area, ensuring patients are not lost in the system and building a profile of local palliative care needs.
A range of professionals from the regional hospital, sub-district clinics, health centres and the local NGOs underwent training over 5 weeks during 2018. Initial findings showed that participants reported a greater than 30% increase in how equipped they felt to use ethical principles to make a palliative care assessment, 71% felt they would volunteer to lead a palliative care team following the course and 82% felt prepared to break bad news, a 25% increase on pre-course figures. All the attendees reported enjoying networking, sharing challenging cases in a safe space and building a team with a variety of professional colleagues.
Awareness of palliative care has been created at various levels. The ward rounds have provided an opportunity to share knowledge and teach colleagues palliative care through bedside role modelling. Feedback included:
‘I’ve been exposed to a more holistic approach to care and thinking about patients beyond their hospital stay.’ (Intern)
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‘I enjoy and learn from being part of a multi-disciplinary team’ and ‘I can approach difficult topics with confidence.’ (Team member)
Bringing together professionals for the ward rounds has increased their skills as they have learnt from each other. The training and local presentations have opened the eyes of many colleagues to the discipline and its principles, leading to the message being passed on in various work environments. This has been seen in many outcomes including better pain control for patients, with ward staff reporting an improvement in pain management from 41% to 67% since the inception of the ward rounds. Monthly sub-district palliative care meetings with a wide range of stakeholders across many disciplines have given the project structure and increased awareness. Sub-district and rural provincial meetings have created buy-in and awareness.
As a pilot for a rural palliative care model, we have attempted to build a service that could be replicated in other rural districts.
Rural palliative care model.
The model highlights how continuity of care and communication are optimised between the regional hospital, district hospitals, clinics, NGOs, emergency medical services (EMS) and the patient’s home. The model has been shared with the rural districts and the chief director for rural health in the province. It has received widespread support, acknowledging the need for high-quality palliative care, but also seeing an opportunity to improve existing aspects of continuity of care in the management of chronic diseases across the whole health spectrum.
Establishing regular multi-professional palliative care ward rounds has changed the way patients needing palliative care are managed, particularly in challenging the mindsets of specialist departments. Death is often viewed as a failure, and proactive planning with patients about their wishes in their final days was not routinely addressed. Doctors in general avoided having difficult discussions about dying with patients and families, instead focusing on the medical and technical aspects of diseases. The emergence of the multi-professional team listening and planning together at the patient’s bedside has restored some of the dignity and ethos of patient-centred care, which is a core principle of the provincial Health Care 2030 vision.
The illness experiences of patients (in contrast with just the disease) are much more appreciated, allowing patient autonomy, fostering respect and caring with competence and empathy.
Initiating and sustaining the model involved a change management process, realising that changes that are accepted into people’s minds and the institutional culture are usually emergent, in response to challenges in care being delivered at the frontline.
While recently described models in Cape Town focussed on establishing palliative care outpatient clinics, the rural model attempts to utilise existing structures. Ward rounds and a virtual clinic aim to minimise additional workload on already overworked health professionals and optimise feasibility.
An essential element of the model’s success was organisational readiness for change at managerial level, with visionary leadership.
The model has developed participating staff’s confidence, with not just doctors taking the lead in consultations, but an appreciation for the value of the whole teams’ skills. The psychologist, traditionally aligned to the psychiatric team, has become an integral part of the wider care of patients. The social worker has embraced technology and taken the lead in data collection. The physiotherapist reminds staff of the weekly rounds and provides a practical approach to problems. With awareness and enthusiasm growing, the Paediatrics Department has recently started referring patients. As more specialist departments are asking for consultations, the weekly morning ward rounds shifted to the afternoons, to allow departmental doctors and nurses to join, as well as overlap with families during visiting hours. These small actions are building sustainability and keeping the momentum for positive change.
Home visits are not happening as regularly as they should. Ideally, all patients diagnosed with an end-of-life illness should receive a home visit soon after diagnosis. One can truly begin to understand the patient’s illness only by seeing the home situation of patients. By acknowledging the patient’s experience in their home and community, we can move beyond simply treating the disease. For this, a radical plan of resourcing more home-based carers and community health workers is needed.
In a short period of time, we managed to build a palliative care service that aims to improve care for patients in rural areas. Its strength lies in a multi-professional patient-centred approach and improved communication between different components of the health system. It provides a more seamless service that supports patients when they need it most. While more time is needed to collect data on prevalence and patient feedback, we have shown the benefits of training and collaboration between team members and ward staff. It has initiated a discussion on palliative care, challenging misconceptions and asking questions, which are ultimately benefitting patients.
This work is made possible through the cooperation and support of a large team of people. These include the sub-district team, Dr H. Louw (manager), Ms M. Marthinus (nursing manager), Dr T. Ackermann (clinical manager), Dr B. Booysen (family physician), Mr S. Honeyborne (pharmacist), Ms N. Gcali (physiotherapist), Drs A. Loftus and L. Marais (medical officers), all the clinic nursing managers and counsellors; the George hospital team, Ms S. Brits (pharmacist), Dr F. Erasmus (medical officer), Ms C. Steenkamp (social worker), Ms E. Bruinders (physiotherapist), Mr M. Engelbrecht (psychologist), Dr T. Gould (consultant physician) and his team, Dr H. Stark (surgeon) and his team, Dr J. Alt (paediatrician) and his team, Dr C. Firmin (gynaecologist) and his team, Drs I. De Waal and M. Viljoen (Oncology medical officers), Sr M. Damons (Oncology nursing sister), the medical team in the Department of Family and Emergency Medicine; and the 4 NGOs, CANSA (Ms A. Maree and her team), iThembaLobomi (Mr B. Utian, Ms S. Hendricks, Sr S. Guze and their team), FAMSA (Ms J. Africa and her team) and Bethesda Care Centre (Me M. Meyer, Sr S. Louw, Sr V. Vertenten and their team), with their home-based carers, volunteers and nurses.
The authors have declared that no competing interests exist.
V.O., L.S.J., M.M., Z.N. and H.S. conceptualised the project. V.O., L.S.J., M.M., H.G., Z.N., H.S. and E.D.K.-G. all contributed to the implementation and outcomes of the project. V.O. and L.J. drafted the first manuscript. All authors reviewed the draft manuscripts and agreed on the final article.
The first author was supported by a grant from the ‘Improving Global Health (IGH)’ project in the United Kingdom.
Data sharing is not applicable to this article as no new data were created or analysed in this study.
The views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors.