Almost half of the world's countries have no access to palliative care, professional support for the terminally ill and their families. EMMS International has reached the midpoint of its development of a palliative care service in Nepal and calls for urgent action to make it available for all.
“It is not only key to reduce serious health-related suffering,” says Cathy Ratcliff, EMMS International’s CEO and Director of International Programmes. “It is also a moral imperative. Neglecting this need is no longer an option.”
It is the world’s poorest who are most likely to experience life-limiting illnesses without help. Non-communicable diseases are predicted to be the leading cause of deaths in Nepal by 2040 and more than a third of the population could face their final days without professional care or morphine.
That’s why the need for EMMS International’s three-year, government funded UK Aid Match project with International Nepal Fellowship, called 'Sunita', has become so urgent. EMMS funded Nepal’s first ever specialist palliative care nurse and opened a dedicated wing at the Green Pastures Hospital in Pokhara. Money raised by EMMS’s donors was match funded by the UK Government meaning that, together with its partners, EMMS is developing vital rural palliative care services.
Palliative care is not offered or seen as necessary in much of the country. By setting up and monitoring dedicated services in rural, hard-to-reach areas of western Nepal, the charity is building strong evidence to help the Government to roll out its national palliative care strategy. So far, the project has trained more than 530 community volunteers and 367 healthcare workers.
Cathy Ratcliff says: “An alarming number of people in Nepal need palliative care. Through this work we hope they will receive it near to where they live through integrated primary and specialist services and a caring society.”
Palliative care patients need more than just medical treatment. Many have unmet psychological needs, often brought on by the stress of spending any money they have on medicines that don’t work and spiralling further into poverty.
Punam* is a mum from a rural district of Nepal. She suffered paralysis in her lower limbs and was diagnosed with a rare neurological condition. Her family took out a loan for medical care, but she showed little improvement and became bedridden. She was finally admitted to the palliative care wing of Green Pastures Hospital, where her wounds improved, and she learned to care for herself. She also had counselling.
Her counsellor reflects, “She had a medical condition which we were treating but her happiness was in being with her baby. She is young herself and enjoys spending time outside and participating in day therapy activities. They brought a smile to her face and she started to open up like never before.”
Punam says: “Back home I feel lonely but here I see patients like me. I can share my feelings. I want to continue my studies despite my bedridden condition. Hope is what I have now.”
So far, EMMS International has trained 367 health workers and 530 volunteers in hard-to-reach communities in rural Nepal, where the charity says there has been a noticeable culture shift.
Anna* is a nursing graduate who took part in EMMS International’s palliative care workshop. She says: “They helped me understand that palliative care is not only about us giving care to the needy but is equally rewarding in terms of gaining lessons on values of life, living it and dying with dignity. I used only to focus on providing clinical and physical care, but after the training I realised that there are broader patient needs apart from clinical care which are mostly not addressed.”
Palliative care does not stop with the patient. EMMS International has found that more than two-thirds of patients’ children take heavy responsibility for their care, which falls largely on girls. Bereaved young people are often left in poverty, which affects both their access to education and their motivation.
“In the coming year we are focusing on child bereavement services,” says Cathy Ratcliff. “We are helping families and communities to send their children – especially girls - to school. Services are giving the whole family the chance to talk about their futures, and training adults to do the caring. This includes giving advice about family finances following the illness and death of a family member, which can so often leave children in poverty.”
*Names have been changed for client privacy.