PAX India, Department of Palliative Care in MNJ Institute of Oncology, Hyderabad

The department of palliative care of the MNJ Institute of Oncology (MNJIO) was formed in 2006 with the support of INCTR, the American Cancer Society and Pallium India. The department now cares for approximately 7,000 patients per year and it is the focal point in the Indian state of Andhra Pradesh (AP) for quality clinical palliative care, as well as training and research. It is also widely recognized as a centre of excellence for palliative care in India. INCTR continues to provide essential funding and Dr. Fraser Black, Co-Director of INCTR's Palliative Access (PAX) Program, acts as a regional mentor for India.

The core missions of the department are training and education of healthcare workers, as well as palliative care advocacy at the regional and national levels. The department has evolved to become a center for practical training in palliative care for nurses, oncologists, other residents and the students of College of Roda Mistry for Social Work.

The department of palliative care currently has a staff of three doctors, four nurses and three social workers. It offers outpatient and in-patient services; home-based care of sick patients in the twin cities of Hyderabad and Secundrabad in partnership with an NGO, and pediatric palliative care services. The pediatric services are unique in that palliative care is integrated into cancer care in parallel to curative treatment from the start. The care team offers painless intervention to children for diagnosis and treatment, regular support-group meetings for the family and the children, active supportive care and end-of-life care, and psychosocial and bereavement support. In 2010, the team made 2,922 community visits. The successful outcomes of the pediatric program have been almost all children receiving cancer treatment and their families are receiving adequate symptom control and psychosocial support during curative treatment along with a smooth transition of end-of-life care, if required. There has been a reduction in the drop-out rate during treatment and there is good implementation of procedure-
related pain relief protocols.

Palliative Care Leadership Development

Dr. Black and Dr. Gayatri Palat, Director of INCTR's PAX Program in India, participated in the first International Palliative Care Leadership Development Initiative (LDI), founded by the Diana Princess of Wales Memorial Fund. This took place at San Diego Hospice from January 23- 31st 2010, which was supported primarily by NCI and the Open Society Institute. The program aims to develop global leaders from LMIC to advance palliative care through skill-building.

In April 2010, Dr. Fraser Black and Doug Ennals, Social Worker Consultant to INCTR PAX visited the Cipla Centre in Pune as a part of the LDI. Dr. Priyadarshini Kulkhani, Medical Director, Cipla Centre, Dr Black and Mr Ennals participated in the LDI held in San Diego in February, 2010 to assist in the center's objective of grooming a team to become national, regional and global leaders in palliative care.

Department's Work with Andhra Pradesh (AP) Government to Improve Palliative Care.

The department continues to advocate for the development of palliative care in AP. Advocacy activities have included, a collaborative initiative with the NTR University in the development of a post-doctoral fellowship in palliative medicine that will start at MNJ in the coming academic year and on-going discussions with the Andhra Pradesh State AIDS Control (APSAC) Program about the inclusion of palliative care training and services for people living with HIV and AIDS.

Partnership with Other NGOs

  • The department is working with a variety of NGOs to improve availability of palliative care for patients with all life-limiting illnesses. We have developed partnerships with organizations such as Pain Relief and Palliative Care Society (PRPCS), Hyderabad, Alzheimer's and Related Disorders of India, MV foundation and Catholic Health Association of India.
  • We are implementing, jointly with the PRPCS and MV Foundation, a community-based palliative care program for the chronically ill in two villages in Chevalla MandaI. We have conducted a needs assessment in these villages, organized a network of volunteers, and have started providing palliative care services to those in need.
  • MNJ IO-INCTR PAX India worked with the WHO-India office and the Ministry of Health to develop gUidelines on Setting up of Palliative Care Services and Procuring Oral Morphine. 4. The Indian Association of Palliative Care has identified MNJIO as one of the regional centers for training.
  • MNJIO-INCTR PAX India has adopted a consultative and advisory role, guiding centers in other states like Maharashtra on how to develop similar nodal palliative care centers.
  • Dr Gayatri Palat was elected to the Board of Directors of the International Association for Hospice and Palliative Care in 2010.

Presentations

The team has presented posters and given papers at national and international conferences. At the 18th International AIDS Conference held in Vienna in July, 2010, INCTR PAX India, along with Human Rights Watch, St John's College and Hospital and the Hyderabad Pain Relief and Palliative Care Society, presented a poster entitled, "Unnecessary Suffering: Lack of Palliative Care in India". The poster highlighted the lack of palliative care for people living with HIV in India and was one of a growing number of palliative care presentations at the conference.

One Month Certificate Courses in Pain and Palliative Care, MNJ Institute of Oncology and Regional Cancer Canter, Hyderabad, India

These one month courses are conducted by MNJ in collaboration with INCTR and PALLIUM India. Their goal is to provide doctors, nurses, social workers and volunteers with practical "hands-on" training in palliative care supplemented by theoretical background information. The courses were held in August, October and December in 2010. Dr. Stuart Brown, Director of INCTR's PAX Program, was part of the external faculty in August.

INCTR PAX Faculty Visits

In 2010, Fraser Black and Doug Ennals visited the MNJ Palliative Care center from March 30 until April 6. This included meetings with the pediatric oncology team, department heads and the Chairman of MNJ, Dr Mandapal to discuss the pediatric palliative care program, data collection and the establishment of a pediatric palliative care program at Nilifour Children's Hospital. The establishment of a pediatric palliative care fellowship and the training of palliative care social workers were also discussed. A visit was made to a rural community based palliative care program.

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