Pain’s human face: Human Rights Watch video on access to palliative care in Mexico

Categories: In The Media.

Following on the success of similar initiatives in bringing together people on different ends of the power spectrum, the organisation plans to collaborate with filmmakers to record a terminally ill patient’s struggle to access palliative care in the country.

Diederik Lohman, senior researcher with the Health and Human Rights Division at Human Rights Watch, said: “One of the things that we’ve seen over in Mexico is that patients who are at the end of life will only have access to palliative care at tertiary care specialist hospitals. And so people who live in rural areas– even though they are very sick – they are within weeks or months of dying, they will have to travel four, five, six hours to Mexico city or one of the other big metropolitan areas in Mexico to access palliative care.”

The fact that a terminally ill person – often in excruciating pain – is obliged to travel on crowded and uncomfortable public transport for hours to realise their right to palliative care must surely be seen as unacceptable. The project aims to make this suffering visible to people in government who have the power to change these conditions and to transform the right of people to palliative care from words on paper to something which is not only attainable but also implemented in practice.

Lohman commends the Mexican government’s stated commitment to the right to palliative care. However, he also points out that these rights are not implemented in practice. He clarifies: “In 2009, Mexico passed a law that is very progressive and actually creates a right to palliative care for any patient with a prognosis of 6 months or fewer, including palliative care at home, but so far that law hasn’t really been implemented. So, legally, patients have a right, but practically they have no way of actually realising that right.”

The main issues that the project will address include: The integration of palliative care into the Mexican healthcare system, training of healthcare workers in palliative care, and access to opioid medications.

Currently, many of Mexico’s health insurance companies do not cover palliative care and do not include palliative care medications on their lists of reimbursable medicines.

At the same time, very few medical schools, nursing schools and technology faculties have integrated palliative care into their curriculum and in-service training opportunities are rare. As Lohman comments: “if you’re looking at building a system where everyone has access to palliative care, that gap in training of healthcare providers has to be addressed.”

Also, access to opioid pain medications is extremely difficult. According to Lohman: “The current system in Mexico is really very complicated. It has a number of requirements for physicians that are difficult to meet and as a result there are very few physicians in Mexico who actually have prescribing rights and there are very few pharmacies that actually carry opioids.”

Lohman hopes that making a video will encourage Mexico’s policymakers to implement the country’s progressive laws and decrease these barriers to accessing palliative care. He said: “I see the video as playing a really important role in moving from right rhetoric to action… what we hope is going to be the outcome of all of this work is that the government will make a concerted effort to start implementing this law.”

Carroll Bogert, Deputy Executive Director of External Relations at Human Rights Watch emphasises the key role of video in opening new channels of communication between people from different ends of society’s power spectrum. She says: “When you can show (policymakers) the video, they are really seeing the experience of others for the first time.” She points out: “Video is an extremely powerful way of conveying to people what the human cost is of lack of pain medication.”

Lohman adds to this, speaking to the unique opportunity for communication that film offers. He says: “in a report we collect a lot of testimonies and these are powerful, but reading a testimonial on paper is one thing, and being able to actually see someone speak about their suffering really raises it to a whole different level. And so what we’re hoping to do with this video is really to make visceral the suffering that people face when they don’t have access to palliative care… patients have this really tough choice between accessing palliative care but having to suffer through long travel on rickety buses and not accessing palliative care and being able to stay at home. And this is really a choice that no-one should have to make.”

The online funding campaign makes it possible for anyone to support this project and to directly contribute to the cessation of unnecessary suffering. The minimum amount to pledge is $1. However, the project will only be funded if it reaches its target of $25 000 by 31 May 2014.

You can read more about the project and help support it by visiting the Kickstarter website.

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