Over the last two to three decades palliative care services have rapidly developed in some parts of south India. However, progress has been very slow in rural north India.
In this resource-poor setting where cancer cure is often impossible because of late presentation and limited treatment options there is a great need for palliative care.
First steps in the development
Development of palliative care services started in rural north India in 2009 with the pioneering work of Dr Ann Thyle, at that time a Regional Director in the Emmanuel Hospital Association (EHA), an organisation which seeks to serve the poor and marginalized within the Hindi heartland of North and Northeast India.
Dr Thyle had become aware of the need for symptom control at the end of life during her time as anaesthetist and obstetrician at one of the EHA Hospitals.
In order to address this need she undertook initial palliative care training at Pallium India in Trivandrum, Kerala, and following that gained a Graduate Certificate in Palliative Care from Flinders University, Adelaide, provided in Singapore. After this she undertook a two month clinical attachment at the National Cancer Centre in Singapore.
Inspired to develop palliative care services, Dr Thyle undertook a needs assessment at Harriet Benson Memorial Hospital (HBMH) in Lalitpur, Uttar Pradesh, one of twenty hospitals of EHA.
The needs assessment highlighted that patients with palliative care needs were sequestered within their homes, often with little care from their families.
They had often spent large amounts on cancer treatment and they were not able to afford further care.
On the basis of the evidence emerging from the needs assessment, a palliative care service was established at the HBMH. The service uses a home care model, with access to inpatient beds and OPD as needed. At that time Uttar Pradesh, which has a population of 200 million people, had no home based palliative services.
Palliative care service starts
In 2012 a grant from EMMS International, a charity based in Edinburgh, Scotland, which works to improve healthcare through partners in India, Malawi and Nepal, enabled the palliative care project to continue to progress.
The grant enabled the newly established palliative care project in Lalitpur to be strengthened and expanded, and also extended to four further EHA hospitals in rural north India.
Palliative care in EHA has continued to expand rapidly with currently seven rural hospitals and one community team in Delhi are running services.
What has been achieved?
All seven hospitals have well established palliative care teams, providing services in the community within 30/40 km radius from the hospital. Patients have access to outpatient and inpatient hospital service as needed.
The core team at each hospital consists of a doctor, nurses and nursing care assistants, with input from the hospital chaplain. One team has a social worker as a volunteer on the team.
Each team has a case load of about 30-40 patients at any one time and they visit 3-5 patients a day, 5 days a week with 24/7 on call service. Patients are seen routinely either once a week, fortnightly or once a month according to need.
The teams work systematically with their local communities in raising awareness of palliative care, holding meetings with the local population, community leaders and health care providers.
The teams provide a holistic service with symptom control, psychosocial and spiritual support, and wound care.
There is a strong emphasis is on teaching family members basic care skills such as personal hygiene and wound care. The teams are thus both empowering the family and the patient and are transforming their quality of life.
At a recent visit to one of the hospitals a patient’s husband remarked: “Her worries go away when she sees them (the palliative care team).”
The teams have also been able to challenge fatalistic attitudes towards death and dying and have enabled more openness within the family and the community.
During another hospital visit a health care professional said: “They are extraordinary. They give home care and treat patient in a very special way,”
Team members have been carefully selected for the project to ensure commitment and shared vision. The teams have had specific education in palliative care and all teams are using the Hospice UK Toolkit in Palliative Care as a resource.
Morphine availability is frequently an issue for the palliative care teams due to cumbersome regulations. Four of the teams have gained the necessary licences for using and prescribing morphine but others are still working on this issue.
The palliative care teams will continue to develop and strengthen their services.
Whilst all team members have gained basic education in palliative care through short courses, are fully committed and have a clear vision for the development of palliative care, further education and support is needed to enable them to develop their knowledge and skills.
It is evident that this interesting and innovative model for palliative care emerging in rural north India with its community based approach and engagement with communities is an excellent example of locally appropriate and evidence based practice.
This development will continue to be supported by EMMS International in association with EHA and led by Dr Ann Thyle.
Find out more about the work of EMMS International on their website.
Erna Haraldsdottir is Director of Education and Research, St Columba’s Hospice, Edinburgh, Ann Thyle is Project Lead Palliative Care, Emmanuel Hospital Association, Delhi, India and Dan Munday is Consultant in Palliative Medicine and Health Services Research, International Nepal Fellowship, Kathmandu, Nepal.