The concept of Pain and Palliative Care needs an urgent makeover among the general public in India. Although most often associated with non-profit institutions diligently serving the poor and the needy, recently even private healthcare institutions have started incorporating it at their hospitals and are trying to expand the reach of palliative care. At present only a very small fraction of patients and families who can benefit from palliative care are able to get access to these services but gradual progress is being made by individuals and organizations working towards a common goal.
Medindia sat with Dr. Vivek Khemka, MD, who specializes in Oncology and Palliative Medicine, and is visiting India from Phoenix, Arizona in the USA. He is a life member of the Indian Association of Palliative Care and is also executive director for the EPEC-India project in addition to being part of several other international organizations working on improving palliative care in India. Dr. Khemka observed that Palliative care in India has made significant progress over the last two decades due to the concerted efforts of several Indian and international organizations. Palliative care is applicable in all healthcare settings from the home to clinics to hospitals.
A. There were no comprehensive programs in Palliative Care when I studied medicine in India in the 1980s and 90's except for a few centres in Kerala. Significant progress has been made since then especially in Kerala which has even become an example for many other countries. Individuals and organizations in some states have learnt from the model there and have over a period of time started their own programs adapting and modifying it to their local needs.
India has one of the largest populations with cancers and other chronic diseases. The need for palliative care services is huge and so is the gap but steady progress is being made. There is still a still a huge need for palliative care training in medical and nursing colleges in India. Palliative Care education is gradually picking up in some urban areas in India thanks to the initiatives of several Indian and international organizations. The Indian Association of Palliative Care is an umbrella organization here in India and they have been active in advancing palliative care education and services and also promoting policy changes for the improvement of palliative care education and services.
Many people in India lack healthcare awareness and have limited access to basic healthcare facilities, as a result of which many people with cancer, HIV and other chronic disease and disorders such as diabetes see a doctor only in the later stages when most of the damage is already done.
With the spiraling number of cases presenting with chronic diseases in the advanced stages in recent years, providing pain relief and end of life care to suffering patients is a huge challenge. Limited availability of opioids for pain relief adds to the problem. Though India is the largest legal producer of morphine in the world and provides most of the morphine for pain relief across the world our own people here do not have adequate access to it due to restrictive regulations. Some states have modified their regulations and some progress is being made. There is a concerted effort being made to improve things at the national level and some results are being seen slowly but with time things will speed up.
I felt it was important to bring the EPEC program based at Northwestern University, Chicago to India with the necessary socio-cultural and medical adaptations that would enable its use for palliative care education in India. Pallium India and the Education in Palliative and End-of-life Care (EPEC) collaborated to "Indianise" the EPEC curriculum for use in India. Several experts who are members of the Indian Association of Palliative Care and Indian Society for Critical Care Medicine along with experts from the USA worked together to adapt and expand the EPEC curriculum. The curriculum adaptation process was supported through a grant from the Lance Armstrong Foundation. The EPEC-India curriculum is now available free of cost to any institution that wants to use it for education and training in palliative care.
Q. How did you get interested in Palliative Medicine?
A. It began during my post graduate training in general medicine in the USA where I was exposed to palliative care and saw how much it can impact the lives of patients and their families. My interest grew over time and I acquired further training in the area. I realized that this was something I wanted to do for the rest of my life and knowing the need for such services in India started developing links with experts in India and the US. When I signed up for a Fellowship in Pain and Palliative Medicine at Montefiore Medical Center in New York, I was offered the option of traveling anywhere in the world for four weeks to visit palliative care programs and I took the opportunity to travel back to India. The International Association of Hospice and Palliative Care supported me with a travelling fellowship and put me in touch with Dr. M. R. Rajagopal at Pallium India. I headed to India to see the progress made in Palliative care and to do some workshops for healthcare providers and to get feedback on how I could contribute to the further development of the field in India. I used the trip to spend time with Dr. Rajagopal and study the current state of palliative care in India and to develop ways of improving and strengthening available services through collaboration.
Q. Tell us about your trip to India that formed part of your Fellowship program in Pain and Palliative Medicine?
A. It was a great teaching and learning experience for me as I visited different places in India providing a workshop on basic training based upon the very effective US program, Education in Palliative and End-of-Life Care (EPEC) curriculum. Dr. Linda Emanuel who is the principal of the EPEC project in the US gave me permission to use and modify the curriculum. Since I am an EPEC trainer and the curriculum is a simple and flexible model to teach palliative care, I modified several modules for the Indian setting and presented them at different places in India. Before I started I spent a few days with Dr. Rajagopal learning about the Kerala model and got feedback from him and his team on the EPEC curriculum. I then did a few workshops in Delhi, Jaipur and Chennai and got further feedback on the curriculum.
Q. How far is India lagging behind the West in advances in the field of Palliative care?
A. Even in the USA there is a huge gap between the need for palliative care and the availability, although this is changing fast. The kind of palliative care services offered in Canada, Western Europe and Australia is unmatched in the US but it is catching up. More programs are now in place to improve the quality of palliative care in the US. Yes, in India most terminally ill patients lack access to palliative care but efforts are on to change the situation. Progress has been made and India is ahead of many Asian, African and South American countries. Kerala has made so much progress that it is an example for several countries to follow. Several individuals, institutions and organizations in India as well as several international organizations such as WHO, International Association of Hospice and Palliative Care, Help the Hospices, Indo-American Cancer Association, Jiv Daya Foundation, International Network for Cancer Treatment and Research, Cancer Relief India to name just a few, are collaborating to make progress in the area. The Medical Council of India has recently in principle approved a post-graduate MD program in palliative medicine and the final notification is pending. This happened largely due to the efforts of several individuals and organizations within India and this will bring about further improvement in the field.
I have observed a lack of awareness about palliative care among the general public and even among physicians and healthcare workers in India. Palliative care programs are generally associated with charitable institutions focusing on the poor, with most programs struggling for resources and funds to survive. If we are able to improve awareness then these organizations can get more support and help in improving their services. Kerala has a successful model where extensive public awareness has resulted in significant improvement in services.
Many professionals are hesitant to enter the field wondering where it will lead them. On the other hand there are patients and families who can afford to pay for services but have little access to them because the services are not professionally streamlined. As I see it, improvement in availability of palliative care services can be achieved through well co-ordinated effort in India to mobilize awareness among the people and policy makers.
As society changes with time, more people have to go out of the house to work. Since many people in India still abide by a closely knit family system and prefer to care for a dear one at home who is elderly, sick or dying, making palliative care services widely available would help us as a society and a nation in caring for our near and dear ones with advanced illnesses.
Q. Even medical experts feel the progress is gradual because Palliative Medicine is a Western concept and an emerging field in India. Do you agree?
A. Palliative care as such is not a western concept. It has been there for thousands of years in most civilizations in some form or the other. Indian culture is a very caring and family centered culture and our society has always had a tradition of caring for the sick and dying. Dharamasalas that were built to care for sick and infirm are just one example. With modern advances in healthcare many of those concepts were incorporated into palliative care but compassion remains at the core of it all. We are still a very caring and compassionate society even though in busy cities that may have changed some due to the daily struggles people face.
Q. How can pain relief and end of life care in India be improved?
A. Every individual has a right to life with dignity. If we can make people aware that they are entitled to that and that relief from pain and suffering is a basic human right, then society will make the change that is needed, happen. An educated consumer is a powerful force for change. We can try to mobilize the consumer by creating awareness on palliative care in a simple and widespread way. Awareness leads to empowerment. Increased public awareness will pave the way for rapid improvements in access and availability to palliative care, because an educated consumer will know what he or she wants and strive to get it soon. Palliative care is an essential part of basic health care. Everyone has a right to basic healthcare.
Palliative care is not technology-intensive, doesn't involve high capital cost and if we have the will, it is easily do-able because we have to just organize and train ourselves to put to use our inherent human skills of compassion and love of our fellow people to soothe a persons suffering from pain and distress. A systematic blend of compassion and health intervention will bring great relief to suffering patients and their families. It is what any mother would do for her child and what we as a society owe to our fellow humans.
I thank Medindia for this opportunity and the good work that you are doing in increasing the awareness about palliative care among your readers. I would also like to thank all the individuals and organizations here in India and elsewhere who continue to humbly work so hard in this area. Things will continue to improve with increasing awareness and resources and the media can help as a catalyst for change.
Medindia is initiating a series of Interviews and discussions with Support Groups and cancer survivors to carry forward the urgent need to mobilize medical experts, patients, their families, governmental agencies, NGOs entrepreneurs and volunteers so that a solid base for palliative care is built in India. In a world that is spinning so fast and everyone getting busier by the day, it is important to reaffirm our duty and consolidate our efforts to relieve people of pain and continuously offer supportive treatment and care.