Narrowing the gap for palliative care in Nepal

One afternoon this week in Kathmandu, the general ward at Hospice Nepal is eerily silent. Aside from muffled noise from a tv set across the room, the only other sound is of patients breathing heavily. 

Some were fast asleep, others wide awake, but all had been bedridden for months. A patient suffering from terminal lung cancer near the window is unconscious, and is here for end-of-life care when therapy became too difficult. 

Next to her, another patient is glaring at the ceiling. Seven painstaking rounds of chemotherapy for ovarian cancer has left her frail. 

In Nepal, more than 70% of adults and 80% of children with cancer die because of it. Today, two thirds of deaths in the country are due to non-communicable diseases including cardiovascular or chronic respiratory ailments and cancer. Yet specialised end-of-life care is rare and  concentrated in cities like Kathmandu and Bhaktapur.

One non-profit trying to fill the gap is Hospice Nepal, which has been working since 2014 to offer palliative care in rural areas of Makwanpur, training caregivers from the locality and connecting them through telemedicine with specialised doctors.

Palliative care is still a little known concept in Nepal where the elderly and sick used to be taken care of by relatives. But with the breakdown of the joint family structure, an ageing population, and as most seniors live alone with their children and grandchildren abroad, the need for hospice care has grown.

The responsibility of caring for the elderly and infirm still rests largely on the family, and there is little social or government support. In fact, the First and Second Long Term Health Plans of the Government of Nepal did not even mention palliative care. 

It was only in the National Health Policy 2076 four years ago that palliative care was for the first time given the same priority as preventive and curative care. Even then, little has been done by the state to inform the public about this form of service, and the role it can play for a comfortable end of life.

Says Rajesh Gongal, a physician at Hospice Nepal: “Despite a lack of government effort, in the past 23 years we have seen more attention being paid to palliative care in the country. More patients are choosing to die peacefully in a hospice than in hospital.”

Gongal’s focus is not on curing disease but on easing symptoms, which may include anything from constipation and anxiety to severe pain and discomfort. 

“Good hospice care involves using treatments to improve quality of life, not more intrusive interventions,” he adds.

The World Health Organization (WHO) recognises palliative care under the basic human right to health. By this standard alone, many Nepalis are already deprived of this right because they do not have the means or access to care close to home.

“In rural localities, basic palliative care is provided in public district hospitals and community hospices, but these are out of reach of most Nepalis and they can only reach it by travelling long distances over difficult terrain,” says Indira Sanjel, a nurse working at Hospice Nepal. 

The demand for palliative care is growing and Hospice Nepal plans to expand to a larger facility on the outskirts of the Valley to  provide support for more terminally ill patients.

This new project also envisions setting up a training hub for both under-graduate and postgraduate professional health education programs. Making use of Project ECHO (Extension of Community Healthcare Outcomes) and by establishing close ties with the Ministry of Health, it seeks to improve access to end-of-life care training and expertise across Nepal’s government health system.

“Our vision is to set a national standard for excellence in palliative care,” explains Gangal. “The national training centre will cater to doctors, nurses and rural health professionals. We want people to look at palliative care as an intrinsic part of health and well being for the terminally ill, not as an optional luxury for only the well off.”

Several months ago, a 55-year-old patient had come to Hospice Nepal with an inoperable cancer in his larynx which had left him unable to breathe. So in a procedure called tracheotomy, surgeons had inserted a tube through his neck to provide a different airway.

He could not speak, and so communicated on paper, and was also a skilled artist. After being treated for pain relief, he wanted to continue painting and the Hospice provided him with the material. 

“He painted a portrait of a fellow patient, and even in his final days he sat with a brush in his hands,” recalls Gongal. "That was a remarkable moment to witness as a doctor.”

Part of the reason most patients at Hospice Nepal are comfortable despite disease is because they are given painkillers like morphine. “This allows patients and their families to share their last days together in a relatively tranquil way,” adds nurse Sanjel.  

Aggressive care such as radiotherapy and repeated ICU visits still dominate end of life treatment in Nepal. But patients receiving such interventions usually experience more pain, and die sooner. In the process, even their families experience more doubt and trauma, research has shown. 

But when end-of-life care starts soon after a diagnosis, patients have less depression and live longer, as shown by a study of people with malignant lung cancer. 

“As families become more nuclear, and youth migration leaves the elderly alone in the country, palliative care in hospices will become increasingly unavoidable in Nepal,” says Gongal. “We are only trying to bridge the gap between those with access to facilities and those without. But ultimately, we need government action.”