Improving access to palliative care

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Published: 10 Oct 2017
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Prof Julia Downing - International Children's Palliative Care Network

Prof Downing speaks with ecancer at the RSM meeting on cancer control about supporting patients in palliative care settings in low-resource environments.

She describes how changes in structure and policy has come about through advocacy and lobbying for recognition of palliative care globally, including countries adopting the Kampala declaration on palliative care, and shares examples of research and implementation of care in low and high income countries.

ecancer has collaborated with doctors and clinics to develop educational modules for palliative care in Africa and India, available online.

I did a presentation on improving access to palliative care in low resource settings. I started off by looking at the need for palliative care globally but in particular in low resource settings. We know that in places like Uganda 80% of patients will present with advanced disease and because of some of the challenges to accessing treatment for cancer in low resource settings palliative care is a core component of the provision of care. I shared about the need to develop palliative care, both for adults and children, particularly in low resource settings. Some of the challenges that we face in doing that are a lack of understanding as to what palliative care is and the need and benefits of palliative care; a lack of people with appropriate training in palliative care; a lack of resources; a lack of access to medications such as some of the strong analgesics such as oral morphine; a lack of policies and guidelines on palliative care. So there are quite a few challenges but the World Health Organisation Foundation Measures for Palliative Care Service Development include policy, education, implementation and access to medication. Then more recently we’ve added a fifth pillar to that which is that of research. So I shared different examples of how we are working to increase access to palliative care. For example, in terms of policy working with governments, working with the World Health Assembly Resolution on Palliative Care for 2014 with the Kampala Declaration, using that to take to governments to lobby and advocate for access to palliative care and the importance of having palliative care within policies, both across non-communicable diseases and communicable diseases but also in terms of having a palliative care policy so that palliative care is recognised by the government.

I then looked at issues around access to medication and shared about the need for access to drugs such as oral morphine. I gave an example of my colleague, who presented at the Commission for Narcotic Drugs just last week in trying to show the need for access to medications across sub-Saharan Africa. Then one of the ways that we’ve done that is in Uganda since 2004, specially trained nurses and clinical officers have been able to prescribe within palliative care and that includes analgesics such as morphine.

So I shared a bit about that work then looked at the issue of education. There’s a big need for education in palliative care, both for palliative care for adults and children and the importance that has been placed within the WHO resolution on access to education at different levels so right through from including it in the undergraduate training, including it in continuing education but also specialist training and the different modes and models of education that are available. So I shared some examples of e-learning such as the ecancer e-learning programmes for Africa and India, the International Children’s Palliative Care Network programmes for children’s palliative care. I gave examples of how education is increasing access to palliative care in low resource settings.

Then I just shared different examples of how you can implement palliative care, the different models of palliative care provision in different countries and the way that we’ve been looking at the models in low resource settings, what can we learn from them and what’s the underpinning philosophy. How can we make sure that palliative care is integrated into the health system? And some of the challenges that exist in terms of implementation.

Then finally I just shared some examples from across different countries of the research that is being undertaken in order to increase the evidence base for palliative care in low resource settings. Some of that research is quite exciting because the research being done in low resource settings is now having an influence and impact on research being done in high resource settings, for example the development of the Children’s Palliative Outcome scale.

So I shared different examples of research and how we are strengthening the evidence base and then concluded by saying the importance of collaboration and giving examples of how, as different organisations working in palliative care, in cancer care, in paediatrics, we need to work together to increase access to palliative care in low resource settings. But that we are able to provide palliative care in low resource settings to a high quality, we can make a difference to the lives of adults and children wherever they’re living in terms of the provision of quality palliative care.