Interview: Pain Relief for Mexcio's - and the World's - Terminally Ill Diederik Lohman and Amy Braunschweiger - Human Rights Watch
go to original November 26, 2014

A 70-year-old patient with melanoma passed away at the palliative care unit at the National Cancer Institute in Mexico City, Mexico on August 28, 2014. His daughter brought him in earlier that day, after traveling with her father for hours because palliative care was not available close to their home. (Ed Kashi/VII/Human Rights Watch)

Mexico, like much of the developing world, is facing a growing public health challenge – more people will be dying from chronic illnesses like cancer, heart disease and diabetes that often cause extreme pain. In 2009, Mexico passed a progressive law granting patients given less than six months to live access to palliative care, which focuses on treating pain and other symptoms. Palliative care is relatively low cost – medicines such as morphine costs pennies per dose, although training staff can be more costly – and it can allow people to re-engage with life and pass away with dignity. Despite this law, little changed for Mexico’s terminally ill – at least at first. Associate Health Director Diederik Lohman talks about how Mexico came to embrace the necessity of pain relief, his work on palliative care around the world, and how it can give the terminally ill an opportunity for joy and meaning at the end of life.

You’ve researched or led research on end-of-life care in India, Senegal, and Ukraine, to name just a few countries. Why did you focus on Mexico?

In 20 or 30 years, a significant part of Mexico’s population will be older than 65. Diseases like cancer, diabetes, and heart disease are rapidly become much more prevalent, in part because older people are much more likely to develop them. This means that in another decade or two, Mexico will see an enormous need to offer care, including pain relief, to patients with chronic illnesses, especially as they approach the end of life. If Mexico prepares now, it can absorb that increase. If it doesn’t, it will run into significant problems down the road.

We began researching this report in 2011 and quickly found that, despite Mexico’s strong palliative care law, most patients couldn’t get palliative care or medications like morphine. Few hospitals offered this type of care. It was ad hoc. If a doctor at a hospital felt passionately about it, and their director chose to give them space and staff, they could begin palliative care. But most healthcare workers received no relevant training. The development of palliative care general has been driven by the enthusiasm of a small number of people whereas the law says it should be available everywhere.

México: Sufrimiento innecesario al final de la vida (HRW Español)

When most people think of Mexico, they think of a country torn apart by drug violence, not a country that needs to get drugs to its people.

The concerns about illicit substances in Mexico are obvious and very important. But we have to differentiate between illicit drugs, like marijuana or cocaine that are grown illegally, and medicines, like morphine, which are made and prescribed in a regulated environment.

It’s temping for governments to regulate controlled substances any way they can – and regulating medicines like morphine is really easy. Production is already regulated, you just add red tape. Preventing production of illicit drugs is tougher.

We don’t want morphine to be sold on the street corner. But regulation has to strike the right balance, so that people who have a legitimate medical need can actually access it.

What does it look like for people in Mexico who need pain relief?

I have a great story of someone whose end-of-life has been transformed by palliative care. Her name is Remedios, and she’s a slight 73 year-old-woman with pancreatic cancer who lives in a small house on a farm two or three hours from Mexico City. Her cancer caused her agony – she was bedridden, and couldn’t eat because of abdominal pain. After being referred to the National Cancer Institute in Mexico City, a doctor told her the cancer wasn’t treatable and sent her to their excellent palliative care unit. They put her on a fairly low dose of morphine.

Thanks to the morphine, her pain was controlled and she could eat again. Once she ate, she could get out of bed and lead a more or less normal daily life. We visited her last August. It was Sunday, so she went to church, and then helped prepare the Sunday meal for her family. She has 7 children, 19 grandchildren, 23 great-grandchildren and 3 great-great grandchildren, with several more on the way. Many come each Sunday to dinner, where they sit around an outdoor table. Even when everyone sat down, Remedios kept moving, making sure her family had enough to eat. She engaged with the kids, talked to her daughters. Without palliative care she wouldn’t have been able to do any of that. It was remarkable to see her able enjoy life in spite of her disease. And isn’t that what you want in your last few months?

However, it was challenging for Remedios to travel to the National Cancer Institute and get morphine. Sometimes, a community ambulance takes people to the hospital, although the journey costs more than she spends in a week. When the ambulance isn’t available, she has to travel by bus. This includes a 30-minute walk to the bus stop. She switches buses two or three times, and the total trip to Mexico City takes 3 or 4 hours. In August, she was still well enough to make that journey. It was exhausting, but manageable. But with pancreatic cancer, there’s a point where she will start to deteriorate, and this journey will become an impossibility.

Ideally, once someone becomes incurable, they should be able to receive palliative care from a family doctor, a local clinic or a small regional hospital. Let it be a 10-to-15=minute car ride, not a four-hour journey.

You’ve worked on palliative care in a number of countries now. What’s your strategy behind the countries you focus on?

We always choose countries because of the severity of the problems. But we also look at whether countries can play a role as regional leaders in palliative care.

India is a powerful example. After our report launch in 2009, and much advocacy by many organizations, India decided to change its drug law, which impeded access to pain medicines for people dying of cancer. The fact that India made these changes because it does not want to condemn its people – 1/6 of the world’s population – to unnecessary suffering is a powerful message. We hold up India as an example to other countries to convince them to change their drug regulations.

As with India, in Ukraine, the biggest barrier to patients receiving palliative care was regulations around morphine and other strong pain medicines. Since our Ukraine report launch in 2011, the country has completely overhauled its regulatory system, and morphine is much easier to prescribe.

In the near future, we plan on releasing a palliative care report in Armenia. Because both Armenia and Ukraine are post-Soviet states with similar regulatory systems, in Armenia we can talk about the changes that Ukraine made, and encourage them to undertake similar reforms.

We chose Mexico because they had a good law on the books but still had significant challenges with palliative care, and because of their impending demographics crisis. But we also believe Mexico can become a regional leader that other Central and South American countries could emulate.

Where do you want to see palliative care policy on an international level?

We want to ensure that global discussions on drugs and health include palliative care, both at the World Health Organization (WHO) and the Commission on Narcotic Drugs. We want palliative care as a human right to be on the agenda at meetings where countries from all over the world talk about cross-border drug or health issues.

In May, the World Health Assembly, the decision-making body of the WHO, adopted a strong resolution on palliative care. Although it was unanimously adopted – every country agreed to the recommendations – and it’s very strong without implementation, the resolution is little more than a piece of paper. It’s not legally binding and there are no enforcement mechanisms. On its own, it doesn’t change much for people in Mexico or elsewhere who have incurable illnesses. We want to make sure the resolution is implemented.

We and others are using this resolution to inspire governments like Mexico’s to improve access to palliative care. In the next two years, we want to be able to show that a good number of countries are taking end-of-life care more seriously – in part because of the resolution—and are making significant progress. We’re building up the public pressure, knowing that some countries will become leaders that others will want to follow. After all, if your neighbor is given credit for doing something right, you will be more likely to want the same. There’s also an element of shame for countries that aren’t implementing palliative care – the feeling of being left behind is also a powerful motivation.

One of the advantages of working on palliative care is that it’s not politically sensitive. I’ve yet to meet a government official anywhere in the world that says they don’t care if cancer patients are in pain.

You had already worked with Mexican officials at the UN level before you began working on palliative care in Mexico. Did it make your advocacy easier?

It certainly paved the road, but it was still a lot of work. We began sharing our findings early on with the government, which has since done its own research to see if we were right. And they have begun making changes.

For example, some doctors chose not to prescribe morphine because their home address had to be included in the prescription form. These doctors asked: What if the prescription, and address, ended up in the wrong hands? We and Mexican physicians brought this up with the government, and after confirming that this was a barrier, they now plan to scrap this requirement.

Here’s another example. In Mexico, a bar-code sticker is needed for an opioid prescription. These barcodes are available in one place in every state – sometimes a six-hour drive or more for a doctor. Many physicians wouldn’t prescribe morphine because they couldn’t take the days off work to pick up the stickers.

To alleviate this problem, Mexico is creating an online system for doctors. Not only will this allow doctors to print barcodes themselves, it will also make tracking morphine easier because of the centralized database. If police find morphine being sold illegally on the street, they will be able to trace it back and figure out what happened – did the patient sell it? Is the doctor selling prescriptions?

One last point. When we began working on this report, one of Mexico’s big insurance providers – it’s administered by a government agency and insures almost half of Mexico’s population – didn’t cover palliative care for most patients. We brought this to the government’s attention. This year, they included a new intervention in the coverage package. Now, many more people will be able to get pain medicine without paying out of their pockets. Before, hospitals would often swallow palliative care costs, but now they can bill the insurance company.

And in the end, it’s about people dying with dignity and with as little pain as possible.

When people are sick and dying in extreme pain, they are in a pathetic state where everything hurts, and anything in the room is too much. The most important thing for most people at the end of life, I think, is to be with loved ones, their spouse, children, grandchildren. But when people are in a lot of pain, they can’t have meaningful contact with them anymore and can’t tolerate the presence of children. The interaction between the patient and the family is reduced to needs – water, medications – and has very little substantive value. Palliative care is all about trying to keep the patient as comfortable as possible, so that people can experience richness and joy in the time they have left.

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