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Today I would like to introduce you Her Excellency Prof. Dr. Gayatri Palat, MD - "a woman behind every smile of a cancer patient". Indeed its my privilege to be a trainee under the guidance of the team led by her. This team of MNJ institute of Oncology, INCTR, Pallium India and Two Worlds Cancer Collaboration has entirely changed my views and perceptions of Palliative care and approach towards the patient. The handwork, dedication, moral support and ethical approach shown by every member of the team is immense and they have once again proved how a team work can do miracles by bringing smiles in patients even at their end stage of life.
Palliative Care for Children in a Resource Poor Setting, an Indian initiative
In Her words:
Today, a child diagnosed with cancer in a developed country has an 80% chance of being cured. Unfortunately, this is not true in India where 75,000 children with recorded cancers each year have a survival rate of less than 20%. Furthermore, of the estimated 2.5 million people in India living with HIV/AIDS, 70,000 are children under the age of 15. Less than 0.4% of needy children have access to palliative care programs designed to address their needs.
Palliative Care for Children in the Mehdi Nawaj Jung (MNJ) Institute of Oncology (MNJIO), Hyderabad
The MNJ Institute of Oncology is a 300 bed tertiary care hospital in the state of Andhra Pradesh, India (population of 65 million). Every year the hospital sees around 1,000 children with cancer.Most of the children require long, intensive curative treatment. Enormous suffering results from painful procedures, undesirable symptoms and the emotional trauma of facing potentially life threatening illnesses. Many children develop severe anxiety, depression and become withdrawn and non-communicative. Families often travel long distances and stay in the hospital for weeks and when the need for community and family support is greatest, they are totally deprived of it. Very early in our endeavour to cure these children, we realized the dire need for an effective palliative care program for both the children and their families as they confront cancer with all of its physical, psychosocial and spiritual effects.
MNJIO Pain Relief and Palliative Care Program, a collaboration of the International Network for Cancer Treatment and Research (INCTR) and Pallium India added paediatric palliative care to their service in 2007. The primary goal of the program is zero-tolerance of pain beginning at diagnosis. Since the paediatric program was established, there has been a rapid increase in the number of children treated beginning with 69 patient visits in 2006 and 2,922 in 2010 ( Fig 1). 70% of children suffered from leukaemia and pain was the most common symptom at referral. Other common symptoms included mouth ulcers, constipation, vomiting and tiredness. The total opioid consumption for the year 2010 was 150gms. Every child undergoing interventions such as intrathecal or bone marrow injections received EMLA cream application +/- oral midazolam before the procedure. Other activities included regular weekly support groups, recreational and educational activities, home based care and regular and emergency telephonic consults.
A few successful outcomes of the program have been:
- almost all children receiving cancer treatment and their families are also receiving adequate symptom control and psychosocial support during curative treatment along with a smooth transition to end of life care if required,
- there has been a significant reduction in the dropout rate during treatment, and
- there is good implementation of procedure-related pain relief protocols.
Scope of the program:
The paediatric pain and palliative care program is the first of its kind for the entire state of Andhra Pradesh. While the program is currently designed to cater only to the needs of children with cancer, we plan to expand it to include all children living with HIV and AIDS and other life threatening illnesses. A fellowship course in paediatric palliative care will start soon to train specialists in the field.