Access to palliative care and pain relief – an imperative of Universal Health Coverage

Only 17 days to #EAPC2019 … The 16th World Congress of the European Association for Palliative Care: ‘Global Palliative Care – Shaping the future’ will explore how palliative care fits with the current global health and identify areas where more needs to be done.

Today, Dr MR Rajagopal, Founder and Chairman of Pallium India and Director of Trivandrum Institute of Palliative Sciences (WHO Collaborating Centre for Training and Policy on Access to Pain Relief), Kerala, India, gives a glimpse of the Floriani Lecture 2019 that he will give at #EAPC2019 in Berlin on Thursday 23 May 2019.

Dr MR Rajagopal

The mother of a woman with cancer places an ad in a Colombian newspaper saying, “Cancer is killing us. Pain is killing me because for several days I have been unable to find injectable morphine in any place. Please Mr Secretary of Health, do not make us suffer any more….”

The woman dies in pain, unable to access morphine.

A couple strangulate their 10-year-old child with persistent pain in a hospital in India and hang themselves leaving a note saying, “We cannot bear to see our child’s suffering anymore.”

Another couple in India approach the High Court asking for permission to euthanise their child with cancer, because though the child got a lot of treatment in three years, he never got pain relief. The child dies a day after his fifth birthday, alone in an intensive care unit receiving inappropriate treatment, but not pain relief.

In India, every year more than 26,000 people commit suicide for health-related reasons. The story may vary from country to country, but the fact remains that 61 million people in the world are in serious health-related suffering.

They all have a right to health care.

What is health? Since 1948 we have defined it as “physical, social and mental wellbeing and not merely the absence of disease or infirmity”. But is that what healthcare systems provide? Or, do they provide merely disease-focused health care with scant attention to wellbeing, particularly to social and mental wellbeing?

Palliative care is the one stream of health care that attempts to provide true healthcare, assessing and managing physical, social, mental and spiritual suffering. And as the Lancet Commission Report of 2017 says, it is low cost.

Then why does it not get done? Could it be sheer resistance to change? Perhaps we need a new normal.

The Astana Declaration on Universal Health Coverage (UHC) of 2018 proclaims that health for all can be achieved only if it is health with all, that the community should be involved in planning and controlling healthcare delivery. This is precisely what compassionate communities achieve in various parts of the world – in UK, Australia, Canada and India – at least in the context of palliative care.

Community involvement

A home visit in Kerala

In Kerala, India, more than 200 communities get involved in palliative care. Typically, a facilitator will be the catalyst for the community activity, starting with awareness and advocacy. Often, willing members of the community get together to form their own organisations taking responsibility for offering palliative care to the needy and raising funds. Care thus reaches the needy in their homes – “when they need it, where they need it” – as proposed in the Astana Declaration. The poor get medications (including opioids) and supplies free of charge as well as social support – for children’s education, food kits for those who may not get enough to eat, and so on.

Often, willing members of the community get together to form their own organisations taking responsibility for offering palliative care to the needy and raising funds.

The movement that started in 1993 in Kerala was so popular that the state government accepted a proposal for a state policy in 2008 and partly implemented it. Now, every primary health centre has at least one trained palliative care nurse providing monthly home visits to every housebound patient.

There are challenges. Tertiary hospitals have been reluctant to provide palliative care. The coordination between the government system and the community-based work is often difficult because of mutual mistrust. Vested interests could come to the fore.

And in the absence of adequate primary care, the demands on the palliative care system can be huge. Especially in the economically backward regions local resources may be difficult to raise. Nevertheless, the success story continues.

Is community participation relevant only to low-income countries? Maybe not. There are plenty of unaddressed health issues even in the richest communities – such as loneliness and social isolation. How much of that kind of suffering can be relieved by professionals alone?

The palliative care success in Kerala has shown us that true health care – physical, social and mental wellbeing – is not an idle dream. We all have a right to health, and we have a right to demand that our health-related suffering must be treated.

Links

Contact Dr MR Rajagopal by email.
Pallium India.
Read more posts about the 16^thEAPC World Congress on the EAPC blog.

JOIN US AT #EAPC2019 IN BERLIN…
Dr MR Rajagopal will give the Floriani Lecture ‘Access to Palliative Care and Pain Relief – an Imperative of Universal Health Coverage’, at 10:00-10:30 on 23 May 2019 at the 16th EAPC World Congress in Berlin. View the congress programme for two more presentations from Dr Rajagopal and all other congress presentations and posters.