 |
Reports
A South Indian Palliative Care Initiative:
An Eventful Year
in Hyderabad
in Nepal
Reinforcing the need for palliative care
The World Health Organization (WHO) estimates that there are 2.5 million people in India with cancer. Around 5.7 million people living in India are HIV-infected. A significant number of patients suffer from other incurable diseases including chronic heart, lung, kidney and age-related diseases, although no precise figures are available. Poverty, ignorance, social stigmata and poor access to care result in a majority of cancer patients being diagnosed only when their illness is in an advanced stage. They are left with very few curative options. They suffer from unbearable pain and other intractable symptoms like breathlessness, feeding difficulties, diarrhoea, fungating or ulcerating lesions and fistulas.
Psychological and spiritual needs, as well as social problems, assume a bigger dimension as the disease becomes incurable, although many patients have a significant remaining lifespan, sometimes measured in years, during which time medical care needs to be continued. Unfortunately, a large fraction of such patients have little or no access to even basic medical services such that the impact on the patient, her or his family and the community is frequently overwhelming. Although in these circumstances palliative care is an imperative need, less than one percent of patients have access to palliative care or pain relief programs in India.
Developing appropriate palliative-care systems
The challenge is to develop a culturally and socio-economically appropriate and acceptable system to address the enormous unmet needs of this marginalized patient population. Many NGOs and individuals have made pioneering efforts to establish relevant programs, but they are few and far between, covering minuscule sections of the ailing Indian population.
In 2006, Pallium India, the American Cancer Society (ACS) and INCTR established a collaboration with the goal of developing an Indian Palliative Care Network (IPCN) and, in particular, to extend palliative care services to regions where they are presently virtually nonexistent. The first phase of the project began in Andhra Pradesh (AP), a state in the south-central part of India, in July 2006. MNJ Institute of Oncology, a regional cancer center located in Hyderabad, the capital city of AP, took the lead in establishing this network.
Since then the Center has quickly established itself as a regional focal point for quality palliative care, training and research. INCTR, the ACS and Pallium India provide the funding, expertise and faculty for the program, and the MNJ Institute has made important contributions, including the provision of designated space.
Initiatives and outcomes
The Center has made steady strides in many areas. Its activities include, but are not limited to:
- Overseeing, planning and devel- oping programs with senior physicians, nurses, administrators and others.
- Developing pediatric palliative care within the general program.
- Setting up a Department of Palliative Care to provide qual- ity care through outpatient and inpatient services.
- Starting a Six-Week Certificate Course in Palliative Medicine and Nursing for doctors and nurs- es respectively (supported and endorsed by INCTR and ACS).
- Training volunteers and social workers.
- Sensitizing professionals and the general public through workshops, lectures and media coverage.
- Collaborating with the govern- ment on policy-related issues in palliative care and pushing for amending the laws on opioid availability.
- Interacting with the state AIDS Control Society to integrate pal- liative care into their programs.
- Identifying new local leaders in palliative care.
- Initiating needs-assessments and research projects.
Figure 1. Patient statistics for the period from January 2006 to June 2007.
Figure 2. Profile of patients.
Figure 3. Morphine consumption for the period from January 2006 to June 2007. |
Many of these initiatives, with the help of local leaders and the support of the hospital management, have borne encouraging results. A few of the most significant achievements are listed below:
(1) Establishment of a fully-fledged palliative care department at MNJ, with adequate, full-time staffing.
(2) Completion of the Six-Week Certificate Course by four doctors and four nurses from different parts of the state and one from another state.
(3) Training (a one-month course) of a social worker and a volunteer.
(4) Conduct of more than 15 sensitization programs for doctors, nurses and public and government officials.
Dr. Gayatri Palat and the Hyderabad palliative care team at the MNJ Oncology Institute and Regional Cancer Center.
|
Virginia LeBaron, RN with recent graduates of the 6 week palliative care certificate course in Hyderabad, India.
|
(5) An exclusive interview relating to palliative care with a national news channel, which was covered by leading national daily newspapers and additional television channels.
(6) Several encouraging meetings with the government, AIDS workers and other social organizations.
(7) A marked increase in the number of patients accessing palliative care in the department (Figures 1 and 2).
(8) A noticeable increase in opioid consumption—a direct indicator of a successful pain relief program (Figure 3).
(9) Successful completion of the following studies:
- “Incidence of Common Symptoms in Patients with Advanced Head and Neck Cancers” (now ready for statistical evaluation).
- “Level of Psychosocial Distress in Patients with Advanced Cancer of the Breast”—selected as the best poster presentation at the Annual Conference of the Indian Association of Palliative Care, 2007.
(10) Formation of the Pain Relief and Palliative Care Society, Hyderabad.
Looking to the Future
| INCTR PAX initiatives in India have been generously supported by the American
Cancer Society (ACS). |
We plan to continue our work by:• Training volunteers to look after patients in their communities; setting up several linked centers in each district of AP; establish- ing regular medical support through professional, home-based care.
- Ensuring sustainability of the pro- gram by tapping locally available resources.
- Lobbying for policy changes in the form of amendments to exist- ing laws to ensure easy availabil- ity of opioids.
- Developing a full-fledged pallia- tive care program for patients with AIDS.
- Ensuring that the center in Hyderabad is recognized as a cen- ter of excellence in care, educa- tion and training.
Gayatri Palat,
Director of INCTR PAX Program and IPCN Hyderabad, India
|
|
|
