Breath is not bated at the U Hla Tun Cancer Hospice in a Yangon’s rural East Dagon Township and time, for its 50 patients, appears neither a burden nor a blessing. visitors may emerge from the hospice compound feeling oddly at peace with their own mortality – but unquestionably grateful for more time.
Patients spend their final days in reduced pain accompanied by family members who have the option of living at the compound. The mood is calm. Sitting up in her bed, Daw Phyu Phu Shwe, 34, from Ayeyarwady Region, rolled up her longyi to show a thigh-length scar from her cancer surgery. Her short, fine hair made the resemblance between her and her 14-year-old son all the more striking. He stood beside her, eyes moist with tears, nervously pulling at the top sheet and staring at the floor.
“He is the most helpful,” said head nurse Daw Myint May fondly stepping to the boy’s side to rub his back. His mother has at most five years to live, said the senior doctor at the hospice, Dr Nyan Linn, but he has a “healthy father working hard in the delta region.”
Like most hospice patients Daw Phyu Phu Shwe, said she wants to go home after her condition is stabilised. “It is not our custom to let the ill patients stay at the hospital for a long time; we take good care in our homes ourselves,” said Dr Nyan Linn as we walked through the sunlit ward past patients and their doting family members. Tins of Ovaltine, stacks of religious texts, snacks, candles and newspapers formed towers on bedside tables.
Most people with terminal illnesses seek treatment at hospitals and some unaccompanied elderly wind up in “homes for the aged poor” throughout the country. The U Hla Tun cancer hospices in Manda- lay and Yangon are the only palliative care facilities of their kind in Myanmar but can accommodate only 100 people. Providing palliative care in the home may eventually be the best model for My- anmar because of its strong family values and large and dispersed rural population, specialists say.
Pushing for palliative care
“It has nothing to do with death and dying,” said palliative care specialist Dr Cynthia Goh in an interview at a new- ly-built training centre at Yangon General Hospital. For cancer patients, palliative care means “fighting your cancer better,” said Dr Goh, an associate professor at the National Cancer Centre Singapore. She is among a handful of volunteer specialists from the Singapore-based Asia Pacific Hospice Palliative Care Network (APHN) who are providing palliative care training to oncologists, physicians, nurses and social workers at the general hospitals in Yangon and Mandalay and Yangon Children’s Hospital.
The other course participants are consultant oncologists at cancer treatment centres throughout the country. The five-day training courses, offered biannually over three years, are funded by a Singapore-based charity, the Lien Foun- dation, which also has projects to build capacity in palliative care in Bangladesh and Sri Lanka. Palliative care is of utmost importance when treating cancers that are not easily cured, said Dr Goh.
“If you have curable disease patients, they are sick for a short while, they go back to their original lifestyle – and that is com- pletely different kind of illness from being sick and then getting sicker and sicker,” she said. The many aspects of palliative care include the management of ulcerating tumours, teaching families how to care for the patient and psycho-social support. Reducing stigma through education and the de-bunking of myths about cancer, such as that it is contagious, is another crucial aspect of palliative care. “If you’ve got an awful smell coming from a wound no one wants to come near you ... Just treating the smell allows people to be social again and be part of the community; it’s all tied in together,” Dr Goh said.
“You’re dealing with the loss of independence, beauty, role, health; people transition through all of this and cope in different ways.” Dr Goh was quick to emphasise that a cure is “not 100 percent one way or the other,” citing the palliative care mantra “Never say never.”
Cancers cause 11 percent of total deaths in Myanmar, says the World Health Organisation country profile. However, the mortality estimate is uncertain because Myanmar does not have a national cancer registry. Gathering information on patient demographics, cancer types and stages of development and the need for palliative care is homework for participants in the APHN training course. In most countries with developing palliative care services, the focus is on cancer, said Dr Goh, as it is “the most obvious.”
Eventually, palliative care will broaden to include other diseases – as it has in countries such as the United States, where more than half of palliative care cases are non-cancer related – to include heart, liver and respiratory failure, neurological diseas- es, and potentially, dementia, she said.
The APHN’s volunteer specialists started from scratch in Myanmar, where “essential” opioid drugs are not available and hospice and home care services for patients with terminal illnesses are severely limited, said Dr Goh. And unlike countries with better health care, cancer tends to be diagnosed late and palliative care begins with the diagnosis, she said. “Even though the doctor is making the diagnosis, treating symptoms and providing chemotherapy, eventually the disease is going to progress.”
The survival rates for colon and cervical cancers are nearly 100 percent until they reach stage three, when they decline sharply. Neck and head cancers, manifested as giant tumours and growths, are common in Myanmar because of widespread betel nut consumption and smoking and are diagnosed late, said Dr Goh.
Even if a patient presents early with cancer they may have to wait between two and eight months to be treated in Myanmar’s general hospitals, Dr Goh said. “It can be heart-breaking for doctors, they see a cancer which is early ... and once the patient is at the end of the queue the cancer has grown and advanced over so many months because of the waiting time,” she said.
“Resources are such that it’s a really long queue.” In common with most other countries with developing healthcare systems, most cancers are diagnosed late in Myanmar. Dr Goh said she hopes Myanmar will adopt a national cancer control program, includ- ing prevention, screening, treatment and palliative care.
When Dr Goh and her team arrived in Yangon in December 2012 to conduct a feasibility study for the project, there were no chemotherapy drugs available in the 2,500-bed Yangon General Hospital – and no pharmacist. The hospital has three privately-run pharmacies in its basement where patients are expected to buy their own medicine. When the team returned to Myanmar six months later there were 20 chemotherapy drugs available at the hospital, an improvement that Dr Goh attributed to the lifting of sanctions and a surge of investment into the country.
Morphine – a key “tool” in palliative care treatment – remains under the control of one doctor and is locked in a safe in the oncology department, which creates a problem if the department head is away from the office. Dr Goh and her team held an “opioid seminar” in 2013 with representatives from the Ministry of Health and the Ministry of Home Affairs, which is in charge of drug regulation, pharmaceutical companies and factories that make drugs.
Despite an ample supply of morphine in Myanmar progress toward increasing its licit use has been slow, said Dr Goh. Permission to make morphine is needed from the Ministry of Industry, which further complicates the process. In the meantime, a health budget that has quadrupled since last year means care providers in Myanmar have the resources to import the drug from countries such as Nepal and India. Morphine can only be administered by injection in Myanmar, but tablets and syrup are more convenient for patients who want to continue treatment at home.
“The dream is people can take their morphine home all the way out to the rural areas and that health care workers there can support them and teach them how to manage constipation and other side effects,” said Dr Goh.
“If we have an opportunity we would like to influence what goes into the curriculum of what these primary health workers in rural areas are learning.”
Treatment at home Because hospitals are filled to over-ca- pacity and hospice beds are limited, Dr Goh and her team are pushing their trainees to consider the provision of home care.
“You have to look at where do the patients want to be; they want to be at home,” she said. Most patients at the Yangon U Hla Tun Cancer Hospice return home within a few months to be with their families and spend time at their temples, said Dr Nyan Linn.
“They want to go to their native town to die peacefully in the hands of their relatives.”
Daw Naw Naw Yu, 64, a Baptist, has been living at the hospice for 14 years. When she first arrived she used crutches and was not able to sleep because she was in pain. Daw Naw Naw Yu was alone but her quarters were the neatest in the women’s ward. She waved from the bedside bench normally reserved for family. Daw Naw Naw Yu has a non-invasive cancer and spends her day reading the Bible. “This is my home,” she said.