The Global Atlas of palliative care at the end of life

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Published: 28 Mar 2017
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Dr Stephen Connor - Worldwide Hospice Palliative Care Alliance, London, UK

Dr Connor speaks with ecancer at IAPCON 2017 about the global development of palliative care and in particular the publication of the Global Atlas.

The Atlas gives a baseline of the current state of global palliative care and an indication of what resources are required to develop palliative care globally.

The main barrier to the growth of palliation worldwide is the lack of access to essential pain medication for three-quarters of the global population due to governmental restrictions.

Dr Connor describes the necessity of an initial palliative care needs assessment in order to advocate at national government level and explains how palliation is embedded within the Sustainable Development Goals but currently lacks a suitable measurable indicator.

We’re fifty years from the founding of St Christopher’s Hospice this year and so it’s kind of a milestone for the field. Over this time the first decades were pretty much limited to palliative care development in high income countries and very slow growth. In the past, I’d say, twenty years we have seen an acceleration of that in both high income countries and, to a much less extent, in low and middle income countries. More recently we’ve seen the global palliative care movement really start to come more into focus, of course since we successfully got the palliative care resolution through the World Health Assembly. At the time we were able to get that approved by the World Health Assembly, which is the governing body of the WHO, we published the Global Atlas. The Global Atlas was used as an advocacy tool but also a background piece for the resolution so that it set a baseline, essentially, if you will. We were trying to answer some simple questions. Essentially we were trying to paint a picture of where palliative care is globally in the Atlas and that included answering questions like how many people need palliative care; what diagnoses and conditions are appropriate for palliative care; how much has palliative care grown and developed globally; what are the barriers to that growth; what are some examples of really exceptional practice in the world including, especially, in low and middle or limited resource settings. Then what are the resources available for palliative care globally and finally what is the way forward, what is the agenda that we should take forward in terms of building a global palliative care movement.

How has changing the availability of opioids affected care and policy?

That’s really one of our major barriers. The World Health Organisation, the International Narcotics Control Board, the UN Office of Drugs and Crime all have published guidance on the problem with lack of access to opioids globally. In fact, we have some what are called opioid abuse problems in high income countries, especially the US, but the real drug problem is a lack of access to morphine and other essential pain medications globally. 75% at minimum of the world’s population live in countries that do not have access, or have such restricted access they might as well not have access, to strong pain medication for treatment of moderate to severe pain. This is a persisting problem in spite of the fact that the authorities have said countries need to do a better job of making these essential medicines available. They’re not; they continue to have opiophobia, they continue to resist. Just this morning I got a message from one of our fellows in Kyrgyzstan who said that they were changing some regulations but the lawyers in the Ministry of Health insisted that you could only have 3mg per 1,000 population which amounts to about 1.8kg of morphine for the country which is a little more than one-tenth of 1% or 1mg of opioids per capita. So it’s really ridiculously inadequate and if those rules stay in place then you end up not being able to grow palliative care and if you do it you’re going to get stock-outs, you’re going to have problems with people being started and then losing access to the medicines.

We could talk all day about the very specific problems and the strategies for how we overcome them. We’ve worked in lots and lots of countries to develop palliative care and we use the public health model, the WHO public health model which is basically the policy, education and medicine availability simultaneously leading to implementation. But within each of those four areas there is a whole laundry list of actions that countries need to take and champions within countries need to take in the policy arena. The first thing we typically do is do a needs assessment and there’s a model for how to do that. We have now with the Atlas some WHO approved methods for estimating the population. WHO, prior to the Atlas, had never recognised that palliative care was necessary for more than cancer and HIV so we’ve got them to agree cardiovascular disease is the actual number one diagnostic group for palliative care. But doing those needs assessments is an essential starting point. If you’re talking about increasing opioids you first need to know who the population is that needs opioids.

So if you have that information and you can rely on it and publish it and get the government to accept it as an official document then you have the advocacy levers start to move and you can begin to say, ‘Well, here’s our capacity to deliver palliative care. Here’s what the need is; here’s how big the gap is.’ We had an estimated 40 million people needing palliative care in the Atlas and only 3 million getting it so globally it’s a very big gap but in many countries it’s actually even bigger because there’s hardly anyone getting any palliative care.

What are some of the major challenges going forward?

A lot of the effort is being put around achievement of the Sustainable Development Goals and so we have been making the argument that in order to achieve universal healthcare coverage, which is part of goal 3 of health in the global goals, that you have to have palliative care. We are actually built into the continuum of universal health coverage from prevention to promotion to treatment to rehabilitation and to palliation. That was one of our big successes was actually getting palliation in the continuum, named in the continuum. So using universal health coverage if you’re in a country and you’re advocating for palliative are and you have some idea of what the need is and you start to talk about that you can’t have a complete healthcare system without palliative care, universal health coverage is one way to do that. One of our problems is we lack an indicator for universal health coverage for palliative care; we have one for NCDs which is the amount of morphine equivalent opioid usage per cancer death which is not an ideal measure for NCDs but at least it’s approved. We’ve tried several other measures for universal health coverage and they haven’t met the criteria for indicators at this point. So we’re calling on our research colleagues to help us with that but in order to use that to help improve palliative care you really have to have a group within the country that’s working on palliative care development, preferably sanctioned by the Ministry of Health, that is pushing for palliative care to be included. Otherwise if we don’t make noise, if we don’t stand up and say, ‘You forgot palliative care, you can’t leave us out,’ then they’ll leave us out.