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Palliative Care in India

Jan 09, 2013

An update on Rakesh Roy, MD, 2012 IDEA-PC recipient

ASCO Connection recently checked in with Conquer Cancer Foundation of ASCO award recipient Rakesh Roy, MD, of the Cancer Centre Welfare Home & Research Institute, Kolkata, India. Dr. Roy received a 2012 International Development and Education Award in Palliative Care (IDEA-PC), which is designed to support oncologists from low- and middle-income countries that express an interest or specialization in palliative care. In the following interview, Dr. Roy discusses his views on the current status of palliative care in India and his ambitious plans for changing how palliative care is handled.

AC: What motivated your interest in addressing India’s palliative care issues? Dr. Roy: India is a developing nation with very high population density. Naturally the number of patients suffering from terminal illness is also very high. Symptoms such as pain, dysphagia, ulcers, bladder and bowel habits, and motor and sensory deficits prevalent in chronic diseases such as cancer, diabetes, paraplegia, and AIDS are not paid much attention.

Dr. Roy (center) speaks during World Hospice & Palliative Care Day.

The psycho-social and spiritual components are overlooked.  In fact, this is a field of medicine where good support can be provided to patients without financially burdening them. Sometimes we physicians tend to be too heroic with our treatment approaches and neglect what the patient actually needs when death is approaching. We lack communication skills in breaking bad news and very often keep the patient in absolute darkness about the nature and stage of the disease. This prevents patients from achieving their last-minute goals. Even curable diseases have some palliative issues that can be taken care of for the patients and caregivers.

I was amazed to hear the kind of networking that goes on for palliative care in the West. The hospice concept is ceremoniously followed, and deserving patients are seldom deprived of opioids. Home-based care services are very much pronounced in the West. Even during terminal stages of life, there are facilities for the entire family to come and spend quality time with the patients. Also the amount of funds collected through charity is amazing. In India there is one state—Kerala—that does very good palliative care work, but the rest of the country is far behind. Huge number of patients requiring palliative care, poor opioid availability in majority of the states, and lack of awareness motivated me to address India’s palliative care issues.

AC: What’s the current status of palliative care in India?
Dr. Roy: Overall, the picture in India is a sad story.  The concept and awareness of palliative care amongst medical fraternity, as well as in the community, is poor. Palliative care is not part of the undergraduate medical curriculum, home-based care and hospice units are lacking, media promotion is minimal, and funds are scarce. Palliative care was not a part of the government health policy until recently when the government announced that they will try their best to incorporate palliative care into the agenda.

AC: Why is it important to create palliative care programs in India?
Dr. Roy: Cancer, diabetes, and AIDS all have a very high incidence in India. Together, these diseases contribute to almost 90% of the patients needing palliative care. The mortality and morbidity rates of chronic diseases in India is very high and suffering is extreme. India is a unique country with diverse religions, languages, topography, and customs. In terms of economy, India is considered a developing nation. The literacy rate is not high, although the population growth is one of the highest. All these factors have led to the development of various kinds of health practices. Yet the concept of palliative care is in the nascent stages in India. It’s not just the public—even the physicians’ understanding of this subject is lacking. Because timely intervention and the best quality of treatment is underachieved, it is of the utmost importance to improve the awareness and services of palliative care in our country. Pain control, which is an important assessment of palliative care service of a nation, is poor in India. Palliative care services can only be achieved by organizing palliative care programs in India.

AC: What are some of your ideas for fixing palliative care in India?
Dr. Roy:
i)          Start a 6-week course in palliative care, collaborating with the leading palliative-care providing organization in India – Pallium India and a U.K.-based organization. This will be a certified course separate for physicians, nurses, and social workers. We had organized a beginner’s 5-day course from Dec. 10 to 14, 2012. Many students at the end of the course showed interest in doing the 6-week course. The planning is over, and we are going to start the first batch early next year.
ii)         I have enrolled my institute in the Global Access to Pain Relief Initiative. The idea of this project is that no patients with cancer should be in extreme pain. Pain levels will be monitored by deputing two physicians and a trained nurse to review the pain charts on a day-to-day basis. I am going to be in charge of this project.
iii)        Celebrate “World Hospice Day” annually.
iv)        Involve government officials in efforts related to easy licensing of morphine and availability of injectable morphine. We have already approached the Health Ministry and there has been a positive response.
v)         Involve neighboring countries such as Bangladesh, Nepal, and Bhutan in the palliative-care crusade.
vi)        Increase the number of deliberations in Rotarian meetings.
vii)       Increase the frequency and the radius of home-based care.
viii)      Create satellite/link centers and identify key physicians and nurses who can bridge the gap.
ix)        Send some of the staff members for constructive palliative-care training.
x)         Involve celebrities in awareness programs, if possible.
xi)        Improve palliative care services in the pediatric population.
xii)       Expand palliative care to rural communities, as our motto is to reach the inaccessible regions of our state.

AC: Have you seen improvements in palliative care so far?
Dr. Roy: Yes. When our institute started the promotion of palliative care by setting up a round-the-clock palliative-care service, it automatically created a stir amongst fellow physicians and some of the local hospitals. We are spreading the concept of palliative care by holding awareness meetings and sometimes combining these programs with the blood donation and cancer awareness/prevention camps. Various nonprofit and charitable organizations are showing interest in palliative care. People are now trying to abandon negative attitude toward opioids. They are accepting the benefits of opioids in advanced pain and some of them are even asking for morphine. The general public is calling our 24-hour helpline number on a frequent basis in to ask more about this care. Change in practice will always be resisted, but with good planning it can be changed for the better.

AC: What has receiving the IDEA-PC meant to you?
Dr. Roy:  Getting the award from a Dr Raphael Catane  in front of such an esteemed audience under a fantastic ambience made each of us feel special. It made us feel that even small physicians like us can make a difference through teamwork. ASCO Connection is one portal of exchanging views. I never really imagined that we would be getting so much attention from the developed world. We are very grateful.




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