Palliative care as a human right

Bookmark and Share
Published: 18 Dec 2014
Views: 3623
Dr James Cleary - University of Wisconsin School of Medicine and Public Health, Madison, USA

Dr Cleary talks to ecancertv at the UICC World Cancer Congress 2014 about the importance of palliative care as a human right more than an economic concern. 

We have to make a very strong case for palliative care but the case for palliative care is not based in economics, it’s based in human rights. That’s the basis of what I think that we’re saying. We do have to provide cost effective palliative care as we provide it but the reason for doing this has to be because it’s a human right. If we look at the cost economic argument I worry that we get caught up in the return on investment and how can we put a return or a value on the relief of suffering? What is the value in saying, “We relieve someone’s suffering. They didn’t get back to work; they didn’t do other things. We relieved their suffering and they actually died peacefully because of the relief of suffering.” And it’s not just pain it’s other symptoms as well but pain is the epitome of what we’re doing and it’s very hard to provide palliative care of excellence if in fact we don’t have good pain control. So that’s why I put all these together.

The cost of morphine is dirt cheap, we should be getting this into countries without a problem and we need to be compelling, as the WHO resolution does, we need to be compelling governments to actually be providing good palliative care and access to opioids in people with advanced disease. There are many countries where access to opioids is limited. Most countries have some opioids but in most of them it’s actually very, very little and there’s very little that has been documented in the Global Opioid Policy Initiative which we did with Nathan Cherny and other partners, ESMO, that there are clearly many, many barriers that exist for it. This is what our international pain policy Fellowship at the Pain and Policy Studies Group has been doing, identifying those issues within education, within law and policy and within the supply chain that may actually exist. So we had examples in Jamaica where rural pharmacists were allowed to stock opioids but they didn’t because they had to go and collect them personally from the central drugs store. So what self-respecting pharmacist would close their store, drive and spend a day waiting to get their morphine to come back? The day that they announced the change in that regulation dozens of pharmacists called the drug regulator and said, “I want to now carry morphine.” A simple little step like that but what it took was for our pain policy Fellows to actually identify that – here’s a problem, here’s the fix, let’s implement it and make that change. And we’re seeing now that there’s much better supply of opioids. There are still other issues -  the cost, making sure there’s enough opioids in the country - but each one of these steps makes a significant difference along the way.

Pain is a reality of cancer. If we even look at the population of people who are living with cancer without active disease who have been treated successfully, up to 70%, seven out of ten people, actually end up having persistent pain following either surgery, radiotherapy or chemotherapy now. So pain is a reality. We think of aromatase inhibitors and the fact that 40% of women are probably stopping their aromatase inhibitors for adjuvant breast cancer therapy because of the aches and pains that they get from that. Now many choose to keep taking them and it’s not necessarily the pain that requires opioids but pain is a significant factor and it is… it’s not inevitable, we do have ways of treating it, we work to prevent it, minimise pain relief, but pain is actually a very strong factor and it has an amazing impact on quality of life for patients. If people are having a pain worse score of 7 or greater on a 0-10 scale that has significant impacts on their ability to interact with their family members, their friends. It has a major impact on their ability to live.

The general public is not right in saying that cancer equals pain but it is actually a part of the cancer experience and we as clinicians have to make sure that we address that properly, assess it properly and then actually manage it in the appropriate ways. Also recognising our public health perspective, that we also have to minimise the risk of diversion from a public health perspective. So it’s the issue of balance that we need to bring into it as clinicians.

There are six collaborating centres, WHO collaborating centres that focus on palliative care. There are two in India, in Kerala, there’s our centre in Madison, Wisconsin, there’s one looking at public health in Barcelona and two in England. But as it specifically looks at opioids and the availability of opioids it has been Madison that’s been doing this since 1996. The one in Trivandrum has just come on board with the access to controlled medicines at the WHO. But in terms of an academic university professor doing this, I am a rare breed and I’ve actually moved and I still do clinical palliative care and medical oncology but really moving into the public health arena and making sure that there is access to the medications. There are others such as Nathan Cherny, Lucas Radbruch coming in and helping and really providing assistance but our aim is to not have this concentrated in Madison. Our aim is to get this out into the regions and we currently have a US NCI funded project for an African Pain Policy Fellowship where we’re working in five countries, working in Ghana, Ethiopia, Sudan, Zambia and Rwanda where we’re actually helping and have Fellows who are collaborating with government officials to bring about changes in opioid availability in those countries. This is a real partnership with APCA; we had our meeting in Entebbe hosted by APCA and we see this as a real model going forward throughout all the regions of the world.

By two years’ time when we meet in Paris for the UICC meeting there are a couple of things I’d like to see and one is that palliative care even gets a bigger place on this agenda. UICC has been a great supporter of the palliative care work, particularly as it relates to advocacy in both Geneva and Vienna and I’ll even add New York. Significantly, coming up in 2016 is the United Nations General Assembly special session on drugs and there is a lot of advocacy going on at the moment to actually have access to controlled substances included in that. We need governments to stand up and say this is an important issue. Drugs is not just crime diversion; the single convention on narcotic drugs says that access to medications is part of that. So if we’re going to discuss drugs let’s discuss access to these controlled substances and make sure they’re available while we minimise the risk, the public health risk, of diversion and abuse.

So I think we’re going to see more and more palliative care focussed but the key is this: as we build both NCD systems or systems that support NCDs, non-communicable diseases, and cancer, palliative care has to be built into these systems from the ground up. This can’t be something that’s just added at the very end and said, “Oh, we’ve got the chemo, we’ve got the radio,” we have to be doing this all together. I think that’s what we’re hearing loud and clear from UICC and will continue to hear – we have to build palliative care into our cancer control plans.