Fifteen years ago there was no such thing as palliative care – care for the dying – in Mongolia. Now there is, thanks to the efforts of one woman, who persuaded the country’s medical establishment that it was possible and worthwhile to prevent people dying in agony.
Odontuya Davaasuren was 17 years old, studying paediatrics far from home in Leningrad, Russia when her father died of lung cancer in Mongolia.
“I didn’t have the opportunity to care for my father or say goodbye,” she recalls. “When I returned to Mongolia, my sister told me that our father had been in constant pain.”
Several years later, as a practising doctor, she shared her apartment with her mother-in-law, who was dying of liver cancer, and she saw first-hand how pain could deprive people of peace at the end their life.
“I cared for her. I fed, washed and changed her, but I could not relieve her pain because I didn’t know how,” she says.
The only medication available for dying patients in Mongolia at the time was what you’d get for muscle pain or headaches, not the persistent pain of a tumour pressing on nerves in the upper abdomen. Nor the multiple other symptoms like constant nausea and vomiting.
“I felt shame and that I am a bad doctor because I didn’t know how to help,” she says.
If these experiences weren’t enough, at work Davaasuren witnessed children with leukaemia so wracked with pain they never smiled or spoke, and a young mother who cried constantly and asked to be killed to escape the pain of stomach cancer.
“Many, many patients died at home, in pain, with great physical and psychological suffering,” she recalls. “Many times, the families bought so much traditional medicine and other expensive medicines. But that was just false hope.”
The idea of palliative care, or care for the dying, was well established in other countries. But in Mongolia, home of the conqueror Genghis Khan, where nomads have lived and died by the harsh conditions of the landscape for millennia, it was entirely unknown.
Then a trip to Sweden in 2000, to attend a European Palliative Care Association conference, opened Davaasuren’s eyes and eventually helped her make Mongolia a better place to die.
“Before I went to Stockholm in 2000, I had never heard these words, ‘palliative care’,” she says. “This was not available in Mongolia or other post-socialist societies.”
On returning, her pleas to Mongolia’s health ministry initially fell on deaf ears.
“‘Why do you want to spend money on people who are dying,’ they asked me, ‘when we don’t have enough for living patients?'”
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- Listen to: The Truth About Cancer: Dying in Comfort in Mongolia on BBC World Service
A wind cold enough to freeze your fingers within seconds is blowing across low brown hills that ripple across the landscape on the outskirts of Ulan Bator, the Mongolian capital.
Not a single building, streetlight or electrical pylon is visible, just a scattering of round tents, called gers, the traditional home of nomadic farmers.
Entering through the sky blue wooden door of one ger, Davaasuren, now 59 and a grandmother, meets Timurbat. He sits propped on a wooden bed, against turquoise fabric printed with large, red roses that line the inside of the dwelling.
Timurbat’s abdomen is painfully distended, his skin has a yellow cast, and the whites of his eyes have turned turmeric-coloured as his cancer-riddled liver struggles to break down the pigment from dying red blood cells.
Like his ancestors, Timurbat has spent a lifetime herding sheep and cattle on horseback, to shelter in winter and water in summer.
But now he is too weak to speak, much less stand.
“My leg and arm hurt, and I have headaches,” he says, groaning and closing his eyes. “I can’t sleep at night. I wish it didn’t hurt so much.”
Davaasuren kneels in front of him, gently prodding his abdomen.
“You can see the cancer here in the lower abdomen,” she says. “This stage is incurable, but I wish for him to be comfortable, without suffering and pain.”
Davaasuren asks Timurbat’s wife, Enkjargal, what medication he has been taking and suggests increasing the dose of morphine.
“Before, he received one tablet every four hours, now he needs more because it doesn’t help,” she says.
Outside the ger as Davaasuren prepares to leave, Enkjargal breaks down in tears.
Davaasuren hugs her close and whispers to her.
Mongolia has the highest rate of death from liver cancer – six times the global average – and the number of cases is constantly increasing. The culprit is a viral infection, either Hepatitis B or Hepatitis C. Spread by contamination with infected blood, and through sex (particularly in the case of Hepatitis B) more than a quarter of Mongolians are chronically infected with at least one of the strains.
It is a slow killer. Over many years, the virus causes genetic changes in liver cells, eventually leading to tumours in some patients. By the time symptoms appear, it is usually too late.
“A good death… and a good life before death, it is a human right,” Davaasuren says.
To make her point to the Health Ministry, after her return from Sweden in 2000, she visited dying patients at home and filmed their desperate testimonies. Back then, terminally ill patients were routinely discharged from hospitals once doctors felt they could not be helped and left to cope alone.
Without pain relief, many considered suicide.
“Many people asked, ‘Please kill me,'” Davaasuren says. “They preferred to die than suffer. After [filming], I would come back in the evening. I just watched and cried, watched and cried. I saw so much suffering.”
Because of the liver cancer statistics, Davaasuren knew most families in Mongolia were likely to experience this suffering.
Her emotionally charged lobbying paid off and in 2002, she was allowed to establish a national palliative care programme, designed to support the dying and those who love them.
Fifteen years on, each provincial hospital in the country provides palliative care, as do hospitals in each of Ulan Bator’s nine districts. Five hospices care for dying patients on wards and at home.
One major change Davaasuren has made is to increase the availability of morphine.
Before she helped rewrite the legislation on the use of morphine for pain relief, many officials believed making it more easily accessible would fuel addiction.
“Now pharmacies can distribute morphine free for all cancer patients according to each person’s need until death,” she says.
She has also trained thousands of doctors to provide both pain relief and psychological support to the dying, arguing both aspects are crucial.
“Spiritual care is sometimes much more important than morphine,” she says. “Spiritual care can relieve pain. Patients lose their anxiety, fear, insomnia… and there are very good changes after accepting death.”
In the palliative care ward of Mongolia’s National Cancer Hospital, Davaasuren sits talking to a man with sad eyes and salt-and-pepper hair in a bed by the window.
As she chats with him about routine matters, their conversation gradually becomes more intimate. There are soft words and a few soft laughs.
“His name is Renchin and he worked in the forest as a builder,” Davaasuren explains.
“He has five children. He feels death is coming, but sometimes when the children are here, he says, ‘I’m OK, don’t worry,’ because he is a father,” she says.
“But I told him, ‘Now it’s time to think about what you need to tell your children, how you need to prepare, because I think it is time. It’s better to know the truth than have false hope.’ He smiled but did not cry.”
Davaasuren speaks to Renchin’s daughter next, who is sitting nearby. Her polite smile changes during the course of the conversation. Tears begin to fall and her cheeks quiver.
“I told her her father is dying,” says Davaasuren. “She said she had hoped for a cure. I said, ‘It is the terminal stage. Now it is not the time to bomb by medicine, it is time to surround him with love.’ She said, ‘Thank you, I understand it now.’
“It’s very difficult for me still. I sometimes cry together with my patients.”
Listen to The Truth About Cancer: Dying in Comfort in Mongolia on BBC World Service