Palliative Care in Cancer – Creativity and innovation in action
Dr Fiona Rawlinson
Professor/ Postgraduate Course Director
Postgraduate Palliative Medicine/Care
Cardiff University School of Medicine, Centre for Medical Education, College of Biomedical and Life Sciences, Cardiff University, United Kingdom.
Corresponding author: Fiona Rawlinson Email: RawlinsonF@cardiff.ac.uk
This special edition highlights some of the present issues and challenges in palliative care provision for children and adults with cancer with particular reference to Low and Middle Income countries[ LMIC’s] .
The seven articles included cover models of current provision of palliative care in LMIC settings, pain management and the impact of the financial burden of treatment on patients and families. The particular challenges of children with palliative care needs are included and the need for effective education on a compassionate approach to palliative care in cancer highlighted. The underpinning evidence base for palliative care in LMIC’s continues to be a priority and some developing research networks and collaborations are described.
The global need for palliative care to sit alongside cancer treatment remains an urgent and pressing priority 1 and to support palliative care initiatives, research, effective education, medicine availability and advocacy are key. However, the themes running through each of the articles also tell a story of creativity, innovative strategies to mitigate some of the challenges described and a sense of building capacity.
In a narrative review, Daud and De Simone2 review all recent guidelines for the management of cancer pain, providing a welcome practical and comprehensive update on its management. They remind us that cancer pain remains a significant burden arising from the disease and its treatment and of the importance of the holistic approach, using non pharmacological alongside pharmacological measures. Although there may be some slight improvement in pain management in high income countries, the issues highlighted in the 2017 Lancet Commission report 3 and the more recent Lancet Commission on the quality of dying for LMIC’s 4 remain in need of urgent action.
In an interdisciplinary collaborative project, Joshi and colleagues 5 outline the financial burden of cancer diagnosis and treatment on patients and families and then move beyond it to suggest practical strategies to help. This is a land mark paper. The authors used a scoping literature review to propose a framework to aid review of finances and discuss financial burden management in terms of prevention as well as management of the situation. The findings include a useful description of a practical approach which includes financial planning as part of a multidisciplinary team approach. This paper starts with quotations from some previous qualitative research interviews in the subject which powerfully places the patient voice central to the discussion and to this special edition.
Downing and colleagues 6 remind us of the difference in survival for cancer in children between high and LMIC’s. The need for paediatric palliative care to be a component of cancer care for children is highlighted and some inspirational examples of how this can be achieved are described, together with the research activities underpinning paediatric palliative care in cancer patients. Key education initiatives are outlined which provide further useful resources.
Salins and colleagues 7 describe the palliative and end of life care initiatives for people dying from cancer in India. A narrative review methodology explored the impact of the increasing burden of cancer in India and highlights the various palliative and end of life care strategies that have been initiated to address the impact - highlighting a core theme of early involvement of a palliative care approach, for which education is needed. There is a powerful account of how continued consistent advocacy can make progress and bring about change.
Namisango and colleagues 8 provide a refreshing review of research into palliative care needs in cancer patients – moving beyond the usual call for more research to take place to describing some of the strategies that could be employed to enhance research capacity and capability. The value of research awareness and activity to teams and organisations is highlighted.
The paper by Bekturova and colleagues from Kazakstan 9 is an example of a research project in action which informed the development of not only research skills and capabilities in palliative care in that country, but also a successful service design for a resilient home care service.
Running through all the articles is a theme of creating best evidence through research and compassion and empathy. In a narrative review, Rao and colleagues 10 explore the literature about teaching strategies for compassion and empathy and how this vital area of health care education has often had to take second place to information about new technologies and treatments ,yet it remains central to a holistic patient centred approach. They discuss the outline and impact of such education on palliative care health care professionals and their practice in LMIC’s.
The need for palliative care knowledge and skills to be available for all patients with cancer is just as important now, as when Dame Cicely Saunders founded St Christophers’ hospice in 1967. It is just over 10 years since the ecancer e-learning modules were launched 11 to support palliative care for cancer in sub saharan Africa – and the subsequent version for India and other regions. The call for further development and expansion of education provision in palliative care for LMIC’s 12 is being answered. The expansion of education, inclosing on line learning mentioned in a number of the papers in this special issue is an exciting testament to those striving to increase and disseminate palliative care knowledge as widely as possible.
Our increased understanding of cancer pathophysiology, genomics, surgical advances and targetted treatments is one of the great achievements of recent years, but with it, disparities and inequities in access to those treatments have widened and the palliative care needs for patients and their families remain an immense impact on the quality of life – and quality of death for those patients. The papers in this special edition take us beyond the challenges and present practical possibilities to address them. Please enjoy the read, reflect on the suggestions and contribute to building this capacity where you can.
ADDITIONAL REFERENCES to the articles of the edition
1. World Health Organisation – Palliative Care - available at Palliative care (who.int) [ last accessed 2 October 2024]
2. Daud M, De Simone G, Management of pain in cancer patients – an update[FR1]
3. Knaull F , Farmer P,Krakauer E et al Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage: the Lancet Commission report. available from Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage: the <i>Lancet</i> Commission report (thelancet.com)
4. Sallnow L, Smith R, AHmedzai S et al Report of the Lancet Commission on the Value of Death: bringing death back into life – available from Report of the Lancet Commission on the Value of Death: bringing death back into life
5. Joshi S, Damani A, Garg A et al. Financial Toxicity in cancer palliative care in India: addressing existence and beyond – seeking remedies for a balanced financial journey[FR2] .
6. Downing J, Daniels A , McNeil MJ et al Paediatric Palliative Care in Cancer[FR3] .
7. Salins N. Rao K, Damani A et al. Palliative and end of life initiatives for people dying from cancer in India : a narrative review[FR4] .
8. Namisango E, Onyeka T, Esther N et al. Creating the evidence base for palliative care in cancer – models and strategies to build research capacity[FR5] .
9. Bekturova A, Saryan A, Kunirova G. Patients and nurses perception of the hospice on wheels service in Kazakhstan: a qualitative study[FR6] .
10. Rao S , Normen M, Sherigar M , Joshi U. Teaching compassion and empathy to health care providers for palliative care issues: a comprehensive review[FR7] .
11. elearning Latest - ecancer
- INDIA: https://ecancer.org/en/elearning/course/16-palliative-care-e-learning-course-for-healthcare-professionals-in-india
- AFRICA: https://ecancer.org/en/elearning/course/1-palliative-care-e-learning-course-for-healthcare-professionals-in-africa
- LATAM: https://ecancer.org/es/elearning/course/32-cuidados-paliativos-en-latinoamerica
12. Rawlinson F, Gwyther L , Kiyange F et al The current situation in education and training of health care professionals across Africa to optimise the delivery of palliative care for cancer patients. The current situation in education and training of health-care professionals across Africa to optimise the delivery of palliative care for cancer patients.