The World Health Organization states that palliative care is an approach that improves the quality of life of patients and their families facing life threatening illnesses through the prevention and the relief of suffering by means of biopsychosocial and spiritual care.
Palliative care is crucial in effective oncology management.
Cancer is a global killer. One in seven deaths worldwide will be caused by cancer. There were 14.1 million new cancer cases in 2012 of which eight million were in developing countries. It is estimated that, by 2030, there will be 13 million cancer deaths per year globally of which most will be in developing countries.
These statistics reflect the impact that cancer has on a healthcare system, but does not start to reflect the impact it has on individuals and families. It is therefore, essential that our healthcare system not only addresses the cancer epidemic with screening, detection and treatment, but also addresses patient centred care and improvement of the quality of life of patients and families living and those dying from cancer.
Oncologists at the University of Cape Town, responsible for caring for this vulnerable population, understand and value the need for palliative care and are pivotal in providing palliative care at Groote Schuur Hospital.
The department has included a multidisciplinary or comprehensive care ward round, where they have ensured continuity of patient care by means of strong relationships with Hospice. In addition, they have introduced small palliative care discussion groups for their registrars on a monthly basis. However, an official training programme has not yet been introduced for their registrars.
Currently, approximately 30% of the registrars in South Africa come from other African countries and the Caribbean, where the need for patient care is higher due to late presentation and relative lack of oncological interventions.
This further emphasises the need for palliative care training. In 2017 the South African Department of Health approved the National Policy Framework and Strategy on palliative care (2018-2022) which stated that there should be strengthening of programmes to provide palliative care training.
The competencies required for effective palliative care are seen by many healthcare professionals as ‘taken-for-granted skills’ and that ‘oncologists should rather focus their energy on curing patients’. These paradigmatic assumptions are reflected in the current curriculum, which has very little emphasis on communication skills, pain and symptom control, teamwork and self-care.
However, it is exactly these competencies which have been shown to benefit both the outcomes of patients with lung cancer by improving their quality of health but also to improve survival rates, as well as reducing rates of depression in patients and burnout amongst oncology professionals.
Globally, these competencies have been recognised as essential attributes required by an oncologist and have been incorporated into the curriculum of European Society of Medical Oncologists and the American Society of Clinical Oncologists.
Palliative care, end-of-life care, communication skills and self-care are identified as essential competencies and should not only be incorporated in teaching and learning but should also be included in examinations.
These global trends are not currently reflected in our local curricula with our high burden of disease. The overarching goal of the project was to encourage decision-makers to incorporate palliative care, not only into their daily practice, but also as an essential element of the oncology training curriculum.
The aim of this study was to survey the need for palliative care training aimed at registrars in a local South African setting. Phase two of the study was to design and introduce an initial palliative care curriculum around those needs, as a pilot project after which the curriculum could be refined based on the response and appraisal of the course after a one-year period.
In 2003, the European Society of Medical Oncologists study, led by Dr Nathan Cherny, surveyed its members regarding their attitudes and involvement in palliative care. This study concluded that oncologists recognise the importance of palliative care, but are inadequately prepared for the task.
The European Society of Medical Oncologists study underscored the need for palliative care training in medical oncology, which led to the development of a palliative care or supportive care curriculum in the European Society of Medical Oncologists curriculum. The questionnaire used for the Groote Schuur study is an adapted validated tool, developed by Cherny et al to determine the ‘involvement in, and attitudes toward the palliative care of patients with advanced cancer’.
This tool was used to survey attitude and knowledge about palliative care, their need for training and to develop a curriculum that ensures comprehensive care of patients and positive resilience amongst a single cohort of junior and senior oncology registrars at UCT.
This study also included a focus group with experts in oncology and in palliative care from both the private sector and the public sector. The findings were presented to clinical oncologists in the academic sector from all eight academic oncology departments in South Africa to determine whether the perceived needs of the registrars were aligned with those of the oncology teaching curriculum managers in their own clinical and academic departments. The combined findings were compared to develop an initial training curriculum in palliative care.
The registrars had enough directions and time to complete the survey online, however, only 50% of the registrars completed the survey. The survey was completely anonymous, therefore no predication could be made on which registrars considered palliative care a necessity.
Among the registrars who did complete the survey the following was found:
- Attitudes towards palliative care services
Some 76% of registrars showed a positive attitude towards integrative palliative care services. About 19% was neutral and 5% was negative. A significant majority of registrars conveyed a positive attitude towards palliative care services in oncology training.
- Towards dealing with patients at the end of their lives
A total of 66% of respondents expressed a positive attitude towards caring for patients at the end of their life and 22% was neutral.
- Towards collaborating with a multi-disciplinary team
Only 42% of the respondents indicated that they routinely collaborate with a multidisciplinary team to provide care. Of these, mostly (89%) collaborated with social workers.
- Towards their own role in providing palliative care
Some 74% of the registrars felt they played an important role in providing palliative care to their patients.
- Knowledge and perceived training needs
About 66% felt comfortable in managing physical symptoms in palliative patients.
- Psychological symptoms
Some 56% of registrars indicated a need for psychological training and 52% indicated a need for communication skills and conflict management training
About 61% of registrars conveyed a need to address spiritual care and manage existential distress.
Focus group results
Eight clinicians with oncology teaching and training experience of more than 10 years participated in a guided discussion, which was recorded and transcribed. An interview guide was used and questions compiled to guide the discussion.
There was consensus that palliative care training was important and that it should be a structured module included into the oncology curriculum.
All the experts agreed that communication skills are extremely important competencies to build into the curriculum and that 40% of the curriculum should focus on communication skills. Essential communication competencies identified were:
- Ability to do advance care planning with patients
- To be able to break bad news and build hope
- How to engage with a patient who enquires about euthanasia
- How to respond to a bereaved patient or family member
- Multidisciplinary team communication.
About 30% of the curriculum should focus on pain and symptom control. There was a concern that the already full curriculum will be overburdened. It was therefore agreed that the curriculum should be integrated at the beginning of the registrar programme and that students should not spend more than four hours per month for a period of one year on the curriculum. A large part of the curriculum will include online modules, and this would culminate with a monthly meeting with tutors, to integrate learning.
When aligning the registrar’s attitudes and perceived training needs with those of training experts in the field, the following recommendations can be made:
- Palliative care is a critical part of oncology care and should form part of service delivery and training.
- Palliative care training should be delivered in a structured curriculum with well-defined outcomes and this should occur early in training.
- Palliative care should form part of the summative assessment and communication skills should be a critical component of the course.
The limitation of this research is that the survey was only done at one university and that only 50% of registrars completed the survey. However, despite these limitations, five universities in South Africa have subsequently joined a mixed mode training programme to develop a palliative care curriculum for all South African clinical oncology registrars.
This training forms part of phase 2 of this research project funded by the Cancer Association of South Africa and will be reviewed to formulate a palliative care curriculum for oncologists in a South African setting.
This research will aim to evaluate the responsiveness to the curriculum content and design, modification in knowledge and skills, change in attitudes and perceptions and finally change in organisational practises.