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Who speaks for who? People affected by life-limiting illness as advocates

18 million people die in pain and distress each year around the world because they don’t have access to palliative care including medications to treat pain. This is a horrifying statistic, and unfortunately easier to comprehend and empathise with if you have witnessed a painful death. But palliative care is not just about dying well, it is also about people with life-limiting conditions, such as cancer, HIV and dementia, and their families and carers, living well. It is about working with people affected and different professionals and health care workers to ensure that physical, psychosocial, legal, economic and spiritual needs are met.

40 million people could benefit from palliative care worldwide yet less than 10% access it globally. 42% of the world’s countries have no hospice and palliative care at all and the situation is hugely inequitable. In many low and middle income countries where there is palliative care, it may only serve a fraction of the need. In Pakistan for example, there is one service in a country with a population of 90 million people. 5.5 billion people live in countries with low or no access to medications for pain treatment. For children, the situation is particularly challenging. 21 million children need palliative care globally. In 2005-2006, children and youth under the age of 21 made up 40% of the intake into hospices in South Africa. Globally, palliative care services for children are rarely available.

So how can this be the case? Well firstly, palliative care is a relatively new concept. It began with the development of the first modern hospice in Sydenham by Dame Cicely Saunders in the 1960s which led to the vibrant hospice movement in the UK and to the expansion of care internationally. The term palliative care was first used in Canada in the 1970s because the word ‘hospice’ created confusion in the French language. Some have suggested that it is not surprising, given that the concept is so new, that there is still such inequitable access.

In addition, there are lots of challenges facing its development, not least lack of understanding about what it means and can offer, lack of political will and policies, legal and regulatory barriers which prevent availability and access to essential medicines and lack of training of health professionals. In addition, we have global and national health systems which focus targets on saving lives and increasing life years. No-one of course argues with this focus, but with mortality remaining at 100%, the growing incidence of non-communicable diseases (NCDs), including cancer and dementia, and an aging population, we need much more focus on sustainable ways to ensure quality care as we live and approach the end of our lives.

Having worked on advocacy on this issue for a number of years, it is evident that while progress is being made, it is not happening quickly enough. We know that social justice movements led by people affected, in particular the movement around access to HIV treatment, can result in dramatic and impactful social change. This provocation piece seeks to explore some of the questions around the extent to which we see people living with and affected by life-limiting illness advocating globally for palliative care access, the challenges faced and the potential power of these voices. Perhaps we need to readdress the existing power balance and look at who is speaking on behalf of who to develop a more impactful social justice movement on the issue?

You can download Claire’s full provocation piece here.

Please share your views about this blog and the full article in the below comments, or you can contact Claire via Twitter.

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