Palliative Care Toolkit (Nepali Edition) Launch

The Nepali version of the Palliative Care Toolkit was launched on 11^th August 2022 at a ceremony in Kathmandu. The launch event was attended by 38 people including high-level officials from the Ministry of Health and Population, government agencies, professional bodies, and academic institutions in Nepal. Dr. Dipendra Raman Singh, Director General of the Health Service Department (HSD) of the Ministry of Health and Population, the Chief Guest, together with Professor Bishnu Dutta Paudel, President of Nepalese Association for Palliative Care (NAPCare) jointly unveiled the Toolkit during the event.

Dr. Dipendra Raman Singh described the release of the Palliative Toolkit (Nepali edition) as a momentous day for Nepal’s healthcare system and on behalf of the Health Service Department committed to making the Toolkit available among local health institutions and its health workers.

Prof. Bishnu Dutta Paudel shared about the development of palliative care in Nepal, describing how it has evolved from hospice care to an important aspect of the management of all people with chronic, incurable, and life-limiting diseases. All health care professionals need to have the skills to deliver palliative care.

Sister Manju B.K, Palliative Care Clinical Coordinator at International Nepal Fellowship Nepal (INF Nepal) Green Pastures Hospital (GPH) in Pokhara and a member of the translation expert committee presented an overview of the Toolkit translation project.

Mr. Stephen R. Connor, Executive Director of World Hospice and Palliative Care Alliance (WHPCA) which hosts the pdf version of the Toolkit (https://www.thewhpca.org/resources/palliative-care-toolkit/item/palliative-care-toolkit-nepali-1st-edition-2016-edition ) along with Mrs. Ruth Wooldridge, one of the original authors sent video messages, congratulating the team on the Toolkit’s release wishing all the best for its effective utilization in the Nepalese health sector.

Nepal like other low and middle-income countries is experiencing a notable shift from communicable to non-communicable disease, leading to an increase in the demand for palliative care. In 2017 the Ministry of Health and Population adopted the National Strategy for Palliative Care which aims to see comprehensive palliative care delivery in Nepal over the next 10 years. The strategy, developed by NAPCare and other partners including Two Worlds Cancer Collaborative (Canada) and building on the WHO Public Health Approach for Palliative Care, aims to create accessible, affordable, and appropriate community and hospital-based palliative care services at all levels of the health system. Its vision is that people can access high-quality palliative care at or close to home even in remote rural areas of the country.

Palliative care is a relatively new concept in Nepal with services being concentrated only in a few major cities. To ensure that people in remote areas have access to palliative care, the national strategic plans to develop systems of Primary Palliative Care to be delivered by generalist health workers in rural districts.

Nepal’s rural health services are centred on district hospitals – one in each of its rural districts - and a system of primary health care centres and health posts, which operate at the village level, serving between one and three thousand people. These health posts are staffed by mid-level health workers, who have basic training in diagnosis and management of common illnesses, and auxiliary nurse midwives. Health post workers are supported by Female Community Health Volunteers who facilitate health care delivery in the community, each focusing on a collection of homes near to where they live.

These workers form the backbone of the rural health care system providing patients and their families with primary health care. The internationally accredited Palliative Care Toolkit developed by experts with experience in low-income settings with limited access to medical services is an excellent resource to train and enable these mid-level workers to provide effective primary palliative care. The Nepali edition has been contextually adapted and translated into Nepali through the joint effort of INF Nepal, Gurkha Welfare Trust, and NAPCare, with funding arranged by Palliative Care Works (UK).

Palliative Care Toolkit translation (Nepali Edition) project was initiated in April 2019. An expert multidisciplinary committee of 14 palliative care, primary care, and public health workers ensured that all contents were relevant in the Nepalese context and made appropriate modifications where needed. Part of this process was led by a pharmacist who ensured that all medications described are available in Nepal.

The Supportive and Palliative Care Indicators Tool for Low-Income settings (SPICT-LIS) which is designed to enable generalists to identify and manage patients with palliative care needs was translated into Nepali and added to the Toolkit. The previously developed Palliative Care Outcome Scale (POS) in Nepali was also included. Following contextualization of the toolkit, translation was undertaken by an expert Nepali translator in consultation with members of the expert group. The completed translation was further verified by the expert group and modifications were suggested and addressed. A complete first draft edition was printed in February 2020.

The draft edition of the toolkit was used in Lamjung District, where 30 health post and district hospital staff were trained in November 2021. (The initial training planned for the end of March 2020 was postponed due to the rapidly developing Covid-19 pandemic.) Following the training, final amendments to the text were made to address issues that had come to light whilst using the Toolkit in teaching and following feedback from trainees.

The evaluation of the translated Toolkit took place in April 2022 by external evaluators from India and Scotland who interviewed those involved in the translation and those who had received training in November 2021. Comments from trainees were positive and encouraging suggesting that the Toolkit and training based on it have been well received.

“The training was fantastic. We have attended many different types of training, but this one was very good. Both the content and delivery of the training were excellent.”                         

“[The training] stresses the importance of listening holistically, knowing the patient better and understanding what is important to them.”    

“I have shared with other staff what I have learned regarding palliative care. The concept of palliative care was new to them.”

Palliative Care Toolkit now is translated into 10 different languages and this Nepali edition aims to empower healthcare workers to deliver effective palliative care, making the vision of the Nepal National Strategy for Palliative Care (2017) a reality. The Toolkit will be the central teaching resource for “EMMS International’s UK Aid Match-funded project Sunita” - a new 3-year initiative in which INF Nepal will develop a Centre of Excellence in Palliative Care and Chronic Disease Management at Green Pastures Hospital, Pokhara (including clinical services, training, education and research), and a model of primary palliative care for rural Nepal. This will lead to an evidence-based model of primary palliative care being developed in Lamjung District and rolled out to four other rural districts over the next three years.