Welcome to Mongolia: A Great Place to Die

Andrew North

 

What comes to mind when you think of Mongolia? My answer, probably like many people’s, was vast empty space, those signature round white tents (which Mongolians call gers, not ‘yurts’ – a word brought in during the country’s period under Russian and Soviet influence) and Genghis Khan.

 

One thing you might not think of is ‘a good place to die’. Yet Mongolia is punching above its weight in palliative care, the branch of medicine that supports people with terminal or complex illnesses. Palliative care takes a magpie approach, borrowing from other medical disciplines and addressing a whole range of issues at once, ranging from pain and other symptoms to spiritual, social and psychological support.

 

In a 2015 survey of global palliative care, the UK comes top, Australia second and the USA ninth. And while the richest Western nations lead the pack, Mongolia appears notably high up, especially considering that it’s well down the economic rankings. (It comes 28th in the palliative care survey but ranks 141st for gross national income (GNI) per capita.)

 

In fact, when it comes to palliative care, Mongolia is performing far better than any comparable economy, and is ahead of several European states with much more developed healthcare systems and greater spending power, including Greece, Hungary and Lithuania. It also eclipses several big economies, including its two giant neighbors, Russia and China.                                                         

 

A ribbon of snow marks the dark hilltops from an overcast sky. The wind bites at the canvas folds of the Tumurbat family ger, their dome-tented dwelling. A few lambs – almost fully grown, too late to be sold – huddle together in a wooden pen nearby, the remnants of a once 100-strong flock. As his aunt and two doctors come into the yard, 18-year-old Dorj Tumurbat stands by the gate, foot up on a kennel. The dog jumps for the visitors, held back by its chain. But Dorj stays put, not even turning his head as they cross the yard and then duck inside the ger. Inside, his father is dying.

 

Tumurbat Dashkhuu has late-stage liver cancer. Although his illness is incurable, there is something the physicians can do: grant him a death that’s as peaceful as possible.

 

The materials for making a ger have evolved – canvas is increasingly being used for the outer walls rather than animal hides – but they are still constructed to the same basic design. A typical family ger is built around two central wooden pillars (larger ones have more), symbolizing the man and woman of the household in harmony. It is bad manners for any visitor to stand in this central, sacred space.

 

But when Dr Odontuya Davaasuren and her colleague enter the ger, everything is off balance. Enkhjargal, Tumurbat’s wife, is holding back tears, clutching a sheaf of prescriptions and other medical papers. The stove is going out. A pool of water is collecting on the linoleum floor, spilling from a washing machine on one side of the tent.

 

 

Next to the washing machine is a large fridge-freezer, and wires strung across the tent’s wooden frame lead to a television, DVD player and other electricals. The ger is situated in a capacious fenced compound, with a platform built for a second tent.

 

The family had been doing well from its livestock business, shifting between the pastures in spring and summer and hunkering down during Mongolia’s harsh winter here on the outskirts of the capital, Ulaanbaatar. But with Tumurbat unable to work, they have had to sell almost all their sheep. Enkhjargal has had to take a part-time job in a local abattoir to make ends meet. Diagnosed late, barely a year ago, Tumurbat’s cancer has upended their lives. And he is in agony.

 

The light from the doorway picks out his face, which is stiff with pain. He sits back across a bed, leaning on a stack of tightly folded blankets. He rests his hands delicately on the source of his torment, a bloated, fluid-filled abdomen, a typical symptom of late-stage liver cancer.

 

The comforting evidence of family surrounds him. At one end of his bed there is a large wooden board propped up on a table and tied to one of the ger’s rafters. It’s covered with color photos of big groups of adults and children. To the side, there’s a small altar with a little figure of Buddha on top and several brass water bowls below, part of a Buddhist ritual to ward off negativity.

 

I fail to find any immediate positives in this example of palliative care in action. Tumurbat struggles even to answer questions from Odontuya and her colleague Dr Solongo Surinaa. “All I want is to be without pain,” he whispers.

 

Solongo is in charge of palliative care at the nearest district hospital, looking after both in- and outpatients. Odontuya asked her to make this home visit during my trip so I could see how palliative care works for those without medical services on their doorstep.

 

Mongolia is the least densely populated country in the world, and distance is one of the biggest challenges to delivering any service there, including healthcare. It is just under an hour-and-a-half’s drive from the hospital to Tumurbat’s home, which is in a semi-rural hillside area – although it is still part of the Ulaanbaatar capital city region. (The Ulaanbaatar region – treated as a province in Mongolia – has a population of barely 1.4 million, but covers an area nearly three times that of Greater London and five times that of New York’s five boroughs.)

 

 

Tumurbat is being hit by surges of what is called ‘breakthrough pain,’ which burst through the 60 mg/day of morphine he has been prescribed. Two weeks earlier, I am told, he had come home from hospital in a stable condition, his pain under control. The oncologists said the best place for him was here with his family. The local clinic would provide outpatient support, including his weekly prescription of morphine tablets – all covered by Mongolia’s national health insurance scheme.

 

But Tumurbat’s condition has worsened in recent days and, as Odontuya and Solongo learn more, it is clear he and his family have not been sure how to react. Enkhjargal has not bought an additional drug, dexamethasone, that had been prescribed to reduce the inflammation around her husband’s liver and thereby temper the pain.

 

And crucially, Tumurbat was not aware that he could take additional, so-called PRN doses (from the Latin pro re nata, meaning ‘as the circumstance arises’) of morphine beyond his daily prescription to deal with the surges of breakthrough pain. If he were to go beyond four PRN doses in 24 hours, then his prescription would be recalculated and updated.

 

On this visit, Odontuya – the more senior doctor – acts as a trouble shooter, explaining how to respond to the pain surges, gently soothing both Enkhjargal and her husband, and providing an impromptu class in spiritual care, advising her how to prepare for his impending death. Enkhjargal is distraught as the two doctors make to leave. Outside she breaks into sobs and buries herself in Odontuya’s shoulder. It is a moment some doctors would struggle with, but Odontuya lets her cry before gently pulling back, and then, holding her arms, urges Enkhjargal to prepare for the end.

 

The doctor’s most direct advice concerns Enkhjargal’s son Dorj, who was due to start his military service the following week. The family has to talk to the relevant authorities to delay his enlistment, Odontuya tells them. “It is so important that he is there when his father dies,” she tells me as we drive back, “to avoid complicating his grief.”

 

Odontuya is more than just a conscientious doctor – she’s also largely responsible for Mongolia’s rapid progress in palliative care. Spurred by her own father’s traumatic death from cancer, she’s made it her life’s work to campaign for better treatment for people with incurable illnesses.

 

The treatment Tumurbat and his family are receiving is a long way from what Odontuya was taught when she trained to be a doctor in the late 1970s. Growing up in Mongolia’s socialist years, when the country was a satellite state of the Soviet Union, she studied in what was then Leningrad. She speaks fluent Russian. It was excellent tuition, she says, “but we were told simply to treat patients, not to treat them as people. There was no compassion.”

 

 

The way her father died changed her outlook forever. He was diagnosed with lung cancer the same year she began her studies in Russia, and in Mongolia’s health system at the time, he was effectively condemned to a painful death. Not only did palliative care not exist, but it was impossible to get hold of morphine or other opioid-based painkillers.

 

Less than a decade later, her mother-in-law was struck down by liver cancer, and Odontuya says she too died in extreme distress. What she calls the “psychological pain” of witnessing a loved one in such a state affected everyone in her family, she says.

 

It was a trauma that many more families have gone through since, because of a steady increase in cancers nationwide over the past two decades, especially liver cancer. The underlying cause was Mongolia’s already high incidence of hepatitis ­– dubbed a “silent” hepatitis epidemic by the World Health Organization – which was exacerbated by frequent needle sharing in the poorly resourced socialist healthcare system.

 

Government policies made things worse, according to Odontuya and other doctors I speak to, by handing out free vodka. In the economic turmoil that followed Mongolia’s independence (after the collapse of the Soviet Union in 1991), the authorities were forced to introduce food rationing. But one thing they had plenty of was vodka, and they added it to every ration. “Each family got two bottles a week,” says Odontuya, shaking her head. “It was a very stupid policy.”

 

Mongolia was already a country of heavy drinkers, and alcoholism became even more common in those early years of independence. Precisely how much impact this had is hard to determine, but with already high rates of hepatitis infection, Mongolian doctors believe the increase in drinking contributed to the rise in liver cancer.

 

But it was this same cancer crisis that helped make the case for developing palliative care in Mongolia. Odontuya started lobbying for the introduction of palliative care in earnest from 2000 onwards. But first she had to come up with the right words. “[In Mongolia], we didn’t have any terminology for palliative care,” she tells me as she gives me a tour of the country’s first palliative care ward, established in the early 2000s at Mongolia’s National Cancer Center.

 

The initial reaction from officials was scorn, she says, as they dismissed palliative care as an “activity for charities.” “They asked how they could justify spending money on ‘dying’ patients, when we don’t have enough money for ‘living’ patients.” She answered with her own question: “Would you say this to your own mother, if she gets cancer or some other incurable condition? And I told them, these are still ‘living’ patients.” Even at the end of life, she says, people have human rights.

 

 

None of the former health officials I contacted responded. That Odontuya encountered resistance is hardly unique. Palliative care advocates elsewhere have also faced skepticism regarding its value – as much from medical professionals as from bureaucrats. For instance, one US study reported oncologists being reluctant to refer patients for palliative care because it “will mean the end of cancer treatment and a loss of patients’ hope”.

 

And for many doctors, palliative care chafes against their default philosophy. As Simon Chapman, director of Policy and External Affairs for the National Council for Palliative Care, a UK-based umbrella charity for people involved in palliative and end-of-life care, puts it: “There is still a view among many clinicians that [a patient] dying is a professional failure.”

 

Today, Mongolia still has the highest incidence of liver cancer in the world. Many people are diagnosed late, when the disease is advanced and doctors can do little to stop it spreading.

 

The Songino Khairkhan district hospital on the west side of Ulaanbaatar has a solidly Soviet feel. Built in Mongolia’s socialist period, its walls are so thick they look like they would stop a tank. And the signs around the building add to the atmosphere, written in the Cyrillic script the Russians bequeathed the Mongolians.

 

Behind the locked door of the hospital’s main dispensary for morphine and other opioid painkillers, I am firmly back in the present. There is an air of efficient calm as two staff members work at computers, updating the database on recent prescriptions, while their boss Dr Khandsuren Gongchigav gives me a short tour of their workspace. The security is necessary to meet local and international laws aimed at combating drug abuse, and here they distribute only opioids. There is another pharmacy in the hospital for everything else.

 

Against one wall is a bulky metal security cabinet, its shelves filled with neat stacks of boxes of tablets. Some contain morphine, the strongest of the opioid family of drugs. It’s used for severe pain, including breakthrough cancer pain, because of its fast and powerful effects. There are other stacks – of tramadol, a less potent opioid for what specialists call moderate to severe pain.

 

There is a lot more to palliative care than pain relief, but experts agree you can’t have a successful palliative care program without it. That means having an effective system for distributing opioids, which both meets patients’ needs and satisfies concerns about addiction and abuse. Reforming Mongolia’s approach to morphine was an early priority of Odontuya’s campaign.

 

 

 

Before the government agreed to reforms in the early 2000s, the rules were highly restrictive and counterproductive. Only oncologists were allowed to prescribe opioids and at a maximum of 10 tablets per patient – enough for just two or three days in most cases. As a result, people with cancer often died of “pain shock” when their dose ran out, says Odontuya, leading to a widespread myth that the drugs were killing people. Making morphine more readily available has helped educate patients and doctors about its benefits and reduced what she calls “morphine-phobia”.

 

Opioid medications still require a special form, as in most countries worldwide. But a much wider range of professionals can now prescribe them, including oncologists and family and palliative care doctors. This has led to a 14-fold increase in their use in the country from 2000 to 2014, according to Mongolian Health Ministry figures. Khandsuren is an oncologist by training, and now oversees opioid prescriptions for all the hospital’s outpatients. The majority are still people with cancer, but non-cancer patients have become more common.

 

Every district hospital in the country now has a pharmacy like this one, allowing patients to visit weekly and get all the medication their doctor has prescribed. Nonetheless, in a country so large and so sparsely populated, that still means long journeys for patients in areas beyond Ulaanbaatar or other towns and cities.

 

Beyond the store cupboard, Khandsuren shows me into a room where they keep garbage sacks filled with empty blister packs. Patients have to hand over the used strips before they can get their next dose. “We do everything here according to guidelines from the United Nations,” says Khandsuren, referring to rules drawn up by its specialist drugs control agency, the International Narcotics Control Board.

 

Mongolia’s achievements have turned it into an example for many middle-income countries struggling with similar health problems but which, for a variety of reasons, maintain much stricter rules on opioid use. Doctors from former socialist states in particular have been coming to Mongolia to learn from its experience, their mutual past ties to Russia giving them a common language and training background.

 

The National Cancer Center recently hosted some doctors from Kyrgyzstan, one of the former Soviet states of Central Asia. They remarked on how “peaceful” the palliative care department was, says Dr Munguntsetseg Lamjav, one of the centre’s senior staff. In Kyrgyzstan, she was told, it’s much harder to prescribe morphine and patients are always crying in pain.

 

One of the most striking contrasts with Mongolia is its giant neighbor Russia. So tight are the rules there on prescribing morphine and other opioids, I learn, that consumption has actually declined in recent years, according to International Narcotics Control Board figures.

 

There is also a tendency among Russian doctors, many still influenced by their Soviet-era training, to see pain as a problem to be endured rather than treated. It is hardly surprising then that palliative care there remains very limited. But one result is frequent horror stories of people with cancer or chronic pain dying by suicide because it is so hard to get effective medication.

 

In fact, many governments around the world remain nervous about making morphine more available – and with good reason. Take a look at the USA, which has an endemic problem with abuse and addiction to legally prescribed opioid painkillers. But there are far more Americans suffering chronic pain (at least 30 per cent of the population according to one study) than there are drug addicts. It is all about balancing priorities, Odontuya argues.

 

This is an excerpt from an article originally published in Mosaic. This article is republished with permission under a Creative Commons license. Read the rest here.

 

Author Bio:

Andrew North is a journalist and writer based in Tbilisi, Georgia, who also packs a sketchpad on his reporting trips. He previously worked for BBC television and radio, reporting from Delhi, Kabul, Baghdad and Washington, before adding drawing to his storytelling kit. He now contributes to Foreign Affairs, the Guardian and Village Voice, among other publications.

 

Highbrow Magazine                                                              

 

Image Sources:

--Kanenori (Needpix, Creative Commons)

--Christopher Michel (Flickr, Creative Commons)

--Sgt. Ben Eberle (USMC, Creative Commons)

--Dan Nevill (Flickr, Creative Commons)

--Prince Roy (Flickr, Creative Commons)

--Pxhere (Creative Commons)

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