Palliative cancer care as a human rights issue

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Published: 17 Dec 2014
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Prof Julia Downing - Palliative Care Research Society, Southampton, UK

Should we be talking about palliative care in terms of economics - or human rights? Prof Downing talks to ecancertv at the UICC World Cancer Congress 2014 about accessible palliative care in cancer, which she describes as a human rights issue.

Yesterday at the Cancer World Leaders’ Summit we had a panel discussion looking at the economic case for palliative care. So there were four of us involved in presenting; we had five minutes to talk about some of the key issues. There are many different issues and one of the things that we were talking about was whether actually there is an economic case for palliative care but actually rather than using palliative care and economics as the argument, actually there is a human right for access to palliative care but then looking at the economics within that. So starting from that viewpoint that actually palliative care is a human right, access to palliative care should be available to everybody regardless of their age, where they live, what disease they have, their culture, religion etc. Starting with that basis and then looking at the economics of it and what is the best way that we can provide palliative care in the best economical sense but also looking at some of the wider impact of accessing services that are experienced in some situations so, for example, the cost to the patient and the cost to the family. In Uganda, for example, where I work, if you are in hospital you have to have a carer with you so the cost of that to the family is not only if it’s the father who is sick, not only is he not working but then another member of the family is having to stay in the hospital so they’re not working; they might then be having to pay for somebody to look after the rest of the family back home. So the costs, the implications of not getting good palliative care for the family, the outcomes are quite drastic. There has been some research done looking at the impact on the family and it shows that the majority in Uganda and India, it was about 96%, of family carers were in debt, had to sell most of or some of their assets in order to be able to pay for treatment. Their children weren’t able to go to school and so the impact of not being able to provide palliative care in a setting that is close to them, where they can keep the family together, is quite big.

How do we cope with that? We need to make sure that palliative care is accessible wherever the family live. So going back to a Ugandan example, to make sure that it’s not just available in the cities but that somebody who is at home in the village can have access to palliative care services there so that they can be with their family; when they’re feeling strong enough they can go out and tend to their gardens, they can sell some things to get some money but they can be there with their family. So the economic impact plus, obviously, all the psychological impact as well is reduced because the family is together, they’re not having to have different family members away from the family, they’re not having to pay a lot in transport. Even the cost of transporting a dead body back from the city to the village is very expensive and so we want to make sure that they can be at home with their families, so just making palliative care accessible in the rural settings as well as in the towns and cities.

There is definitely a training issue. There’s a training issue for health professionals, there’s a training issue for community carers and there’s a training issue for families as well. So big training issues and the training needs to be addressed in different ways. So hopefully integrating palliative care into undergraduate curriculums so the doctors are trained, the nurses are trained, the social workers are trained, even so the religious leaders have training on palliative care, so integrating it into training for different professionals but also continuing education and making that available. There are a wide variety of programmes available, face to face programmes but also e-learning programmes through the ecancer, through the International Children’s Palliative Care Network, so trying to make that training available to different people. But then also community volunteers, community health workers, the people who live in the community, giving them some basic training on how they can help each other and provide that support. So, yes, there are big training issues and cultural issues and making sure that medications are accessible, that people can access medications and things like that. So many challenges but they’re not insurmountable challenges and I think when we’re working together we can try and overcome some of those challenges.