Palliative care has been one of our priority issues for the last six or seven years and basically the work we do is to document the barriers to palliative care for patients and families as well as really documenting barriers for healthcare providers in offering palliative care.

We look at policies, laws etc. to identify how they interfere with the provision of palliative care.

Then with that documentation the next task is to do advocacy and try to get governments and healthcare systems to change the way they operate and make sure that palliative care is actually available to patients who need it.

What are the main barriers to palliative care?

There’s a number of different barriers.

One of the biggest barriers is actually the invisibility of the patients and their families.

What happens in many countries is that once someone is diagnosed with an incurable illness they’re told that there is nothing that the healthcare system can do for them anymore.

So they’re sent home and they end up dying in really horrible circumstances but in the confines of their home, far away from the decision makers, the cameras etc.

Of course patients in the last weeks or months of their lives when they’re very sick, they’re really poor advocates for themselves.

They’re too sick to go out and demand their rights and generally family members are faced with an enormous burden of caring for someone who is not only dying but is dying in really difficult conditions.

So the family members are really not in a position to advocate for their rights either.

So what that means is that these people become almost entirely invisible.

Healthcare systems have many different priorities in any country around the world and so those who speak most loudly about their needs are those that are going to be addressed first.

So if you don’t have a constituency that is demanding action then action isn’t going to happen.

To me that is probably the single most important barrier.

Our role here is to go out to countries like India and talk to patients with incurable illnesses, talk to family members and to use their stories, their testimonies of the suffering they face but also the testimonies of patients who have been able to get access to palliative care about the peace it gave them, the fact that they weren’t in pain anymore and how that, in a way, revived them and allowed to spend their last weeks or months living with dignity, take those stories to the policy makers, the decision makers, to make the case for change to that.

So that’s one critical barrier.

Then there are a number of common policy barriers.

One of them is that healthcare systems are often almost entirely geared towards saving lives.

So the only objective of many healthcare systems is to cure people. In fact, if we look at what is measured in terms of outcomes of health interventions, it’s all focussed on how many years did we add to someone’s life.

It’s not about what is the quality of those extra years.

So that means that, for example, if you look at cancer control programmes for countries, often you’ll see that there’s a big focus on developing the infrastructure, on medications, on radiation machines etc.

So the bulk of the money is invested or ear-marked for cure.

There’s maybe a little bit of money for prevention but then when you look at the other side of the spectrum there’s almost nothing or, in some cases, actually nothing about addressing the needs of patients who can no longer be cured even though in many countries, in a country like India 70-80% of patients are diagnosed when they have advanced cancer.

The vast majority of those have no chance of cure.

So really the only health interventions that they can still benefit from are palliative care interventions.

So there’s an enormous disconnect in countries where the vast majority of the cancer population needs palliative care but palliative care is not actually addressed in the national strategies.

So that’s obviously a barrier. If the government and the healthcare system aren’t planning for the needs of those patients, those needs are not going to be addressed.

So that’s one important policy barrier.

A second policy barrier is related to training of healthcare providers.

If you look at medical curricula, nursing curricula often as well, the focus in those curricula is on curative interventions, it’s not on care and support and palliative care.

So you see that in many countries generations of physicians have been trained to cure but not to care.

Obviously if physicians are not trained, are not exposed to knowledge and clinical practice in palliative care, they’re not going to actually know how to take care of patients who are at the end of life.

That’s something that we’ve seen over and over again in interviews with healthcare providers in different countries.

They’ll tell us, ‘Well, we know how to manage TB. We know how to manage HIV but nobody has ever taught us how to manage pain or how to manage breathlessness or so many of the other symptoms that are common in patients requiring palliative care.’

If you don’t train your healthcare workers they’re not going to be able to provide the services. So that’s the second major policy barrier.

Then the third major policy barrier is related to access to medicines.

The biggest problems exist around the availability and accessibility of controlled medicines like morphine.

What you see there is that because they are controlled substances countries have regulations that determine who can handle these substances, who can prescribe them, how they are dispensed etc.

Those regulations are often written by people who have no background in healthcare or in public health.

They’re essentially written by people in justice departments, people with a law enforcement background who really are more concerned about making sure that these pharmaceutical products are not abused than with making sure that they are available and accessible for patients who have a medical need for them.

So, again, you see this enormous disconnect where, in the end, the regulations simply make it impossible or nearly impossible for physicians to prescribe these medicines or for pharmacists to stock the medications or for patients to fill prescriptions for morphine.

So that means that pain is one of the most common and most disconcerting symptoms that people with incurable illnesses have.

If physicians can’t prescribe medications to treat that pain, well you can’t really provide palliative care.

How are you going to deal with a patient’s psychosocial issues or their spiritual issues if the only thing they can think about is that terrible pain that they’re in?

What are the ways in which these barriers can be broken down?

We’ve been involved both in work at a national level in about ten countries as well as in trying to start addressing these at the global level.

We recognise that we would need a hundred years in order to do research and advocacy in every country in the world.

Also, a lot of the barriers that you see on the country, on the national level, are actually the result of our thinking about health and drugs on the international level.

The access to morphine piece is a very good example of that.

Since the 1960s, 1970s the world has been engaged in this war on drugs where really, from the international level, the signal has been we have to crack down on drugs without any kind of thought about, hey, you know controlled substances actually also have a medical function.

In fact there are twelve controlled medications, or medications made of controlled substances that are on the WHO list of essential medicines but for decades nobody was talking about that.

Everybody was talking about cracking down on drugs.

So, of course, that translated into countries adopting all these very restrictive regulations that interfered with the ability of a healthcare worker to prescribe the proper medications for pain or other symptoms to patients.

So what we’re trying to do is to reverse that.

Our theory of change is that if we can change the rhetoric at the international level then that will start to trickle down into national health plans, national regulations etc.

We’ve worked a lot over the last few years with two UN bodies that are very important for removing these barriers.

One is at the World Health Organisation and the World Health Assembly, which the World Health Assembly is basically a meeting of health ministers that happens once a year where the top decision makers in health from around the world talk about the most important public health issues, global public health issues, that the world is facing.

What we saw when a number of years ago we did a review of the agendas and the outcomes of the meetings of the World Health Assembly and we realised that palliative care had never been on the agenda as a stand-alone issue at these meetings.

There had been some discussion about palliative care in the context of HIV, in the context of cancer, but really, if you think about it, all of us in all countries around the world, we’re going to die one day and many of us are going to die of some sort of combination of chronic illnesses that are going to be accompanied by symptoms for which we are all going to want relief.

So in some ways there probably is no other issue that is so clearly a global challenge that we all face, whether rich or poor.

So with that message a number of years ago we, and a coalition of other organisations, started to talk to health policy makers from countries around the world to say the issue of palliative care needs to be on the agenda of the World Health Assembly so that there is a discussion about how we can globally tackle the challenges that we face, challenges that are only with every year becoming more significant.

Because world populations are growing older in every country, or almost every country, around the world.

People are living longer now than they were twenty years ago.

More people over 65, more older people will mean more people who develop chronic illnesses which means more people who will require palliative care.

So over the last few years there has been some very significant progress in the realm of the World Health Assembly.

Last year, in 2014, the issue of palliative care was on the agenda and about a dozen countries got together to draft a resolution which is basically the way the World Health Assembly expresses itself is through resolutions.

So they drafted a resolution that set out a vision for how palliative care should be provided around the world.

I think in the end the document, this resolution, was very progressive.

It sets out a vision where palliative care should be integrated into healthcare systems all around the world.

Palliative care should be provided at all levels of the healthcare system, so not just in large specialised cancer hospitals but also in smaller community hospitals and even by general practitioners in the community.

The resolution had enormous support.

There were between 30-40 countries that spoke out strongly endorsing the resolution.

The resolution in the end was adopted unanimously.

So basically every government in the world has agreed that this is the vision for palliative care that they aspire to.

The resolution was adopted last year in May, so now we’re in the early stages of implementation.

The World Health Organisation has taken on this role very energetically.

So we’re seeing a lot of work right now to prepare a World Health Organisation strategy for the implementation of palliative care.

There are plans for developing guidelines around palliative care developing manuals that countries can use to start implementing palliative care.

There’s discussion about developing a number of country projects where WHO would work with national governments on implementation of the resolution to show how specific elements of the resolution can be put into practice.

Obviously the idea is that those experiences would then be shared with the global community so that other countries can learn from those efforts.