Why isn’t end of life care higher up the development agenda?

According to the World Health Organisation, over 60% of new cancer cases globally are from Africa, Asia, Central and South America. Although incidence rates are low, the number of people surviving the disease in these regions is even fewer. 70% of global deaths from cancer are in these four regions alone. Delays in diagnosis mean more people in developing countries are already at an advanced stage in their illness. Poor families may receive treatment that they can afford and is available, but it is not always the most appropriate and some forego treatment altogether.

A lack of palliative and end of life care is a global problem. Almost 80% of the global need is in the developing world, but most care is provided in high- income countries. Without such care, the millions of people diagnosed with diseases such as cancer, diabetes, lung and heart conditions or non-communicable diseases (NCDs) – the majority under the age of 65 – may face dying in pain, without dignity or the care that they need. Research shows this can have an impact on families who have lost a loved one, leaving them with painful or difficult memories that may stay with them into the future.

Palliative and end of life care can make a huge difference to people with chronic and terminal illnesses. The National Council for Palliative Care, a UK body, defines it as holistic care that takes into account a person’s physical as well as psychological, social or spiritual needs. It can help to improve quality of life, and for those nearing the end of life, can enable them to die in their place of choice, usually at home or in a hospice.

Although many in low and middle-income countries die at home, this often isn’t through choice, but rather as a result of poor healthcare systems and a lack of required care services. Few services exist in poorer countries and where they do, they are unable to meet the needs of rapidly growing populations. According to the Global Atlas of Palliative Care, in Pakistan, where NCDs are estimated to account for 50% of deaths, there is one palliative care service for every 90 million people (the total population is an estimated 193 million). In Turkey, which is recognised as a middle-income country, there is one service available for roughly every 360,000 people. This is in contrast to the Netherlands – a rich economy – where there is one service for every 200 people.  Just 58% of countries in the world had one or more hospice palliative care service in 2011, with integration within health services only the case in 20 countries globally.

woman lying down on the doorstep of a stone building with a small child looking away from the camera

Woman in front of the Home for the Sick and Dying Destitutes, established by Mother Teresa, in Kolkata, India |Photograph Zvonimir Atletic / Shutterstock

 

There are examples of where greater investment in palliative care is making a difference. Hospice Africa Uganda aims to provide affordable care and has achieved this in 80% of the country’s districts. However, initiatives like this are often at risk from the withdrawal of donor funding.

What else is being done?

Nine of the thirteen targets included within the UN’s Sustainable Development Goal for ‘Good Health and Wellbeing’ are identified as major health priorities. Included in this list for the first time are non-communicable diseases. Cardiovascular, chronic respiratory disease, cancer and diabetes together account for 82% of deaths worldwide. Despite being the cause of 60% of global deaths in 2000, they were noticeably missing from the Millennium Development Goals at their launch. The same could still be said of palliative and end of life care. While efforts are being made to prevent and control non-communicable diseases these fail to take account of the millions living with these diseases.

Conversations about death are often seen as taboo, but it is something that will happen to all of us. With more people living longer, talking early on about how we want it to happen is important now more than ever. Palliative and end of life care accounted for just 0.16% of the £2 billion spent by government and charitable funders on health-related research in the UK in 2014. Raising awareness at home could help to encourage greater investment in an area that is desperately underfunded and recognition of the urgent need for palliative and end of life care to be prioritised within the global development agenda. This is so that the growing numbers of people in the developing world diagnosed with NCDs receive the high-quality support that they deserve to help them live as well as possible until they die.

Find out more:

The Economist – The Problem of Pain

News Deeply – How Nurses and Cheap Morphine Made Uganda a Model for Palliative Care

The Guardian – Cancer rates are soaring in Africa, yet Tanzania’s radiotherapy hub stands idle 


The views expressed in this article are those of the author and do not necessarily represent the views of Development in Action.

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