I learned from a recent survey that the best place to die is Britain even though griping about the health care system in that nation is as common as complaining about the weather. Kidding aside, since the development of palliative care did actually begin there with Dame Cicely Saunders in the 1950s, I’ll give them the benefit of the doubt. However, one of the more interesting findings in The Economist’s recent Quality of Death Index ranking palliative care across the world is that Mongolia, a poor country where palliative care did not exist 15 years ago, ranks higher than some of the more affluent economies. It is 28th out of 80, ahead of Venezuela and the Czech Republic and just behind Israel and Poland.
Palliative care for people at the end of life is meant to ease their physical, psychological and spiritual suffering. However, in many parts of the world, especially in poorer economies, it is still unknown. Experts estimate that globally fewer than 10 percent of people who need end-of-life-care, actually receive it.
The Economist Intelligence Unit measured the affordability and quality of palliative care available to adults, based on five categories: palliative and health care environment, human resources, affordability, quality, and community engagement.
In the high scoring countries, palliative care is a stand-alone academic specialty but in others, accredited courses rarely exist, so without well-trained professionals, the availability of palliative care is restricted. Furthermore good quality palliative care usually includes access to medications to reduce pain, but in many parts of the world this is not permitted. Good palliative care also requires psychological support and the willingness of doctors to involve patients in their own care and help them make choices about care and treatment.
Mongolia, a landlocked sparsely populated nation of 3 million between China and Russia, stands out among the low income countries because of the work of a single doctor, Odontuya Davaasuren, a pediatrician, known there as the mother of palliative care in her country. She learned about advancements in end-of-life care at a European Association for Palliative Care conference supported by the Open Society Institute.
Dr. Davaasuren, who studied medicine in what was then Leningrad during the Soviet era, said the conference really opened her eyes. She had never heard about palliative care and knew nothing about pain management or the psychosocial support of terminally ill patients. However, she had watched children with terminal leukemia die in hematology units without pain medication, and watched the emotional suffering of families who could do nothing while their child died in agony.
This humanistic and very important part of medicine was not available in post-socialist countries like Davaasuren’s, and when she approached the minister of health, he didn’t understand her question because there was no word for palliative care in the Mongolian language. She was asked why she wanted to establish palliative care for dying patients’ “quality of life” when they did not have enough money for living patients. There were no hospices or palliative care teaching programs in Mongolia, where they lacked the terminology for having a conversation.
Starting from scratch, Davaasuren began to raise awareness about not only palliative care but patient’s rights, as well. She got more support from the Open Society Institute to take palliative care courses in Poland and attend leadership conferences. She translated and published several World Health Organization (WHO) guides on pain symptom and management into Mongolian.
Davaasuren has since helped set up palliative care facilities in Ulaanbaatar and provincial hospitals are also able to accommodate patients who need such care. Palliative care is now included in health and welfare legislation and taught at medical schools. Today Mongolia is rising above many more advanced economies in providing palliative care. There are laws protecting patients’ rights, affordable pain medications, and all the country’s medical schools have palliative education programs.
In addition to the books and papers distributed to attendees, at a successful 2002 Leadership Conference on Palliative Care in Ulaanbaatar, Davaasuren also gave them a calendar with photos of an old woman, cared for by her son, and the words, “Life begins with love and should end with love.”
The world needs more doctors like Odontuya Davaasuren.