Palliative care indicators – the debate continues

Diederik Lohman, Senior Researcher, Health and Human Rights Division, Human Rights Watch

I fully agree that a global indicator for palliative care should ideally measure not just pain control but palliative care more broadly. The problem is that we do not have an indicator for palliative care broadly that has been tested, validated and for which the data can realistically be gathered in a standardised manner across the world. So the choice is stark:

1. We go with an indicator linked to opioid consumption, for which data does exist from around the world; or

2. We end up with nothing related to palliative care in the global monitoring framework for non-communicable diseases (NCDs).

There are real concerns about the opioid consumption indicator. But better an indicator with limitations than the alternative: the world adopts a monitoring framework that will set the agenda for discussions on non-communicable diseases for the next decade that doesn’t include any reference to palliative care. That would mean that palliative care would be marginalised in NCD discussions for a decade to come. The risk that palliative care would be left without an indicator is not imaginary. Had it not been for persistent advocacy for a palliative care indicator, the WHO discussion paper would likely not have included one.

With an indicator – even one that isn’t ideal – palliative care has a seat at the table. It will be on the agenda, giving palliative care advocates an opportunity to push for integration of comprehensive palliative care ­ – not just pain control – into national and international NCD strategies. In my opinion, the number one priority of the palliative care community should be to make sure that the currently proposed indicator is not removed because I think the only alternative is ending up with no indicator. Secondly, the palliative care community needs to develop, test, and validate a more comprehensive indicator that can be measured in a standardised fashion worldwide in a cost-effective manner so that next time a global monitoring framework is agreed we can propose something better.

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