Report
Background
I am a board certified Internist and Geriatrician currently completing my one-year fellowship in pain and palliative medicine at Montefiore Medical Center in the Bronx in New York. As part of my fellowship I had the option to travel anywhere in the world for four weeks as an elective to learn or teach palliative medicine. I have upon my return completed a one-year certificate course in medical ethics and humanities from New York University and this training had been invaluable in dealing several ethical and legal issues in palliative care during my trip to India. I chose to travel to India where I originate from to see the progress made in palliative care and to do a few workshops to provide an introduction and basic training in palliative care to physicians. My director at Montefiore Dr. Sean O’ Mahony, Dr. Lyla Correoso, the IAHPC, my wife Dr. Meenakshi Goyal-Khemka who is a pediatric oncologist, my host Dr. Arjun Rajagopalan and several others have been very supportive of my effort and helped me through the process of planning and implementing this visit to India. There was no palliative care training available in Chennai when I went to medical school there over a decade ago and later when I worked there. This visit was an effort to look at the present state of palliative care and ways of improving upon the existing services by collaborating with and strengthening existing programs and institutions and also to look at the possibility of integrating palliative care education into the post graduate training.
India is home to almost a fifth of the world’s people. There is an estimated over a million and a half people with cancer every year and several millions living with HIV, most of whom are diagnosed in the late stages. The ageing population is also growing with several other chronic diseases and there is a lack of geriatrics education in the medical curriculum. In the past decade there has been rapid economic progress and improvements in health care in the government and private sectors. Despite this due to the large population there are still hundreds of millions of people lacking access to basic health care. Cancer, HIV and many other diseases are diagnosed in the very late stages due to this. Even among those with access to care only a tiny fraction has access to palliative care and even fewer have access to opioids for pain relief and end of life care. This is despite India being the largest legal producer of morphine in the world. Just as in most parts of the world there is lack of palliative care training in medical or nursing schools. Most palliative care programs are concentrated in the Southern state of Kerala with very little availability in the rest of the country although this is slowly improving in some urban areas with the involvement of the Indian Association of Palliative Care. There is a significant discrepancy in the standards of care and education. There are basic six-week courses at Amrita Institute of Medical Sciences (AIMS) and few other places in Kerala and an advanced two year post graduate training program at AIMS. The rest of the country has little to offer in terms of training and there are a few dedicated physicians struggling to create awareness and providing palliative care services through charitable means.
My visit to India was planned to provide a basic training based upon the EPEC (Education in Palliative and End-of-Life Care) curriculum, which has been a very effective program here in the US and has also been used in a few other countries. I chose to use the EPEC curriculum since I am an EPEC trainer and also since it is a very simple and flexible model for teaching palliative care. I had planned to and was able to provide copies of the EPEC curriculum to all participants and this would not have been possible without the grant from the IAHPC. To keep costs low I was able to reproduce the EPEC participants handbook with permission in India where it is much cheaper to make reprints and copies. This I was able to do with help from my former colleague Dr. T. Madhu who made arrangements to have the large number of copies made.
I had worked at Sundaram Medical Foundation in Chennai before I left the country and being familiar with the practice environment there it seemed to be a good place for me to start. My host Dr. Arjun Rajagopalan, Chief of Medical Staff there has been very supportive of furthering education and extended an invitation to teach palliative medicine there. Initially my plan was to have three of four workshops at the same place but over time in discussions with my host it seemed that there might be a greater benefit to spread them across different centers and so I did workshops at Rajiv Gandhi Cancer Institute in Delhi, the capital of India, Bhagwan Mahaveer Cancer Institute in Jaipur, the capital of the state of Rajasthan, at Sundaram Medical Foundation in Chennai and also at the Barnard Institute of Radiology and Oncology at the Madras Medical College (now known as Chennai Medical College) in Chennai which is one of the oldest medical schools in the country. In India most cancer care is provided by oncologists who provide radiotherapy as well as chemotherapy and are well trained to do so during their specialization. I also had opportunity to visit Jeevodaya Hospice for cancer patients in Chennai.
Activities
I left New York in the last week of March. The day after I reached Chennai I went over to Sundaram Medical Foundation to meet Dr. Arjun Rajagopalan and discuss the details and arrangements for the workshop to be held there. Two days later I left for Kochi in Kerala to meet Dr. M. R. Rajagopal at Amrita Institute of Medical Sciences and to spend time learning from him about the state of palliative care in India and about his program since he was one of the earliest people to specialize in this area in India. He heads the departments of anesthesia and pain and palliative medicine there and runs the only post graduate diploma training program in the country in pain and palliative medicine. I also had opportunity to make presentation on several modules from the EPEC curriculum, which I had modified to the Indian setting. We also discussed the possibility of exploring working the government on the issues of making opioids more easily available for patients with advanced diseases and also the possibility of looking at opioids other than just morphine. Fentanyl transdermal patches, which are very expensive, are more easily in some centers than morphine due to restrictive regulations and business interests of manufacturers. We discussed the advantages of having methadone being made available if it could be manufactured in India. This would not be difficult since India has a very advanced pharmaceutical industry but the barrier was trying to convince a manufacturer to look into this, as there was little profit since it is an off-patent medication. Their input was invaluable. Dr. Rajagopal and I also had opportunity to make a presentation to the medical board of the institution on the issue of non-beneficial treatments and withholding/withdrawing artificial ventilation and other life support measures at end-of-life when patients did not want them or they were futile as there are no clear guidelines yet in India on these issues. We had discussions on the ethical and legal basis on how these were approached in the US and other countries. The possibility of multiple medical societies coming up with a joint statement on this issue was explored.
I was then back in Chennai for two days during which time I had further discussions on these issues with Dr. Ram Rajagopalan who is the president of the Indian Society of Critical Care Medicine (ISCCM). Non-beneficial treatments and withholding/withdrawing treatments has been an issue the ISCCM has looked at in great detail from a medical and ethical angle and had recently drafted a set of guidelines which they had opened for comment and was due for release soon. In the absence of clear detailed legal guidelines this was the best set of guidelines available for physicians in India. Another barrier we discussed about was the distinction between physician assisted suicide and euthanasia which are not legal in India and withholding/withdrawing futile treatments at end-of-life. We also discussed the role of palliative care in the Intensive care units when patients’ condition worsened despite the best available treatments and in accordance with their wishes.
I then spent two days at Rajiv Gandhi Cancer Institute in Delhi. This is one of the best cancer treatment centers which has all the subspecialties including a home hospice program which is provided free of charge to cancer patients. I conducted an interactive workshop over two days, which was well received by the faculty and staff there. I am thankful to the administration of the center especially Mr. K. K. Mehta and CEO Dr. Y. P. Bhatia for this opportunity of visiting their center and interacting with their faculty and staff. They also have a wonderful pediatric oncology department, which is headed by the dedicated Dr. Gauri Kapur who is doing great work for the children with her tireless efforts. I also had the honor of meeting Dr. Harmala Gupta who is a cancer survivor and started India’s first cancer survivors support group Cansupport upon her return to India from Canada in the eighties.
I then went to Jaipur where I visited Bhagwan Mahaveer Cancer Institute. I attended a workshop on interventional and non-interventional pain conducted by anesthesiologists from there and other leading anesthesiologists from the city. Drs. Anjum Joad and Malati Tiwari run the palliative medicine department there along with other anesthesiologists at the institute which provides significant amount of charitable care. I conducted a two day interactive workshop on the complete EPEC curriculum. The most interesting parts of the workshop were the legal issues, which was presented by Dr Kabra, a surgeon and a lawyer who is also associated with the Avedna hospice in Jaipur. Dr Rakesh Gupta, surgical oncologist and Oxford trained in palliative medicine and founder of Rajasthan Cancer Foundation made an excellent presentation on communicating bad news with patients and families and the importance of involving patients in the decision making process. In most non-western cultures including in India there has always been the notion that telling patients the diagnosis will harm them and families do not want their loved ones to know they have cancer. We had discussions on this since in reality most patients already know their diagnosis either form reading their multiple test results, which they have easy access to or from other patients when going for treatment. Most physicians felt it was better for them to talk to the patient about their diagnosis and involve them in the treatment plan rather than the patient finding out on their own.
I returned to Chennai and networked with some community and hospital based physicians and had opportunity to learn how they approached palliative care issues in the environment of restricted access to opioids and the lack of experience in using them. I also had the opportunity to meet Dr. Mallika Tiruvadanan who is organizing the annual meeting of the Indian Association of Palliative Care Meeting for 2006 in February in Chennai. I conducted a two-day workshop at Sundaram Medical Foundation on the EPEC curriculum, which was attended by physicians and residents from the hospital as well as form the community. Drs. Rajagopal and Gayatri Palat traveled from Kochi to study the effectiveness of the EPEC curriculum as a teaching tool in the Indian setting. Dr. Reena George, Oncologist and Head of Palliative Medicine at Christian Medical College, Vellore which is one of the premier medical schools in the country made a presentation on common physical symptoms and their management in patients with advanced disease and at end-of-life. We again discussed the legal and ethical issues and the possibility of preparing a joint position statement on treatments at end-of-life based upon the ISCCM guidelines. The workshop was also covered in a leading daily newspaper.
The next day I visited the Barnard Institute of Radiology and Oncology at Madras Medical College which is the largest training center for oncologists in Madras. They held a joint meeting with the Tamilnadu Association of Palliative Care (TNAPC), which was organized by Dr. Manjula Krishnaswamy, surgeon, co-founder of the TNAPC and medical director of Jeevodaya hospice. I had opportunity to make presentations on communicating bad news and on legal issues which were well received and followed by detailed discussions on various aspects of palliative medicine and the role of oncologists and other physicians in continuing to care for the patients even in advanced disease. Several senior academic physicians and residents attended this meeting.
I then visited Jeevodaya Hospice for cancer patients, which is run by missionary nuns who are also trained in nursing. They provide charitable in-patient palliative care to patients with advanced cancer. It is a very nice place built on the outskirts of the city and is run by charitable contributions from various organizations and people. I was very moved by their dedication and involvement in providing care for the patients when others were unable to and they had nowhere to go to. It gave me the feeling that people still care for others and hope is not lost in our society.
I also visited Dean Foundation in Chennai, which is a charitable organization run by Deepa Muthiah providing palliative care to those who cannot afford. I learnt about their extensive use of complementary and alternative medicine use in palliative care which was more acceptable to many of their patients in addition to routine care with oral morphine.
Observations:
There is a lack of awareness about palliative care among people, physicians and healthcare workers.
There is a lack of access to palliative care.
Most palliative care centers were concentrated in one state in India. Kerala has more palliative care clinics than the rest of the country put together.
There is a lack of standardized training programs with only one post-graduate training program in palliative care in the entire country.
Restrictive regulations and lack of opioid availability contribute to the already poor availability of palliative care.
The focus on a single drug Morphine as the solution to all palliative care needs has in many ways prevented further developments and resulted in the lack of other cost effective potent opioids especially methadone. Some gains have been made in opioid availability but it is still a tiny fraction of the need.
There is a lack of clear guidelines on palliative and end-of-life care.
There is a willingness among a few physicians and certain medical societies and organizations to get involved in improving the situation despite the slow process in the government.
Most palliative care programs are charitable and focus on the poor. People who can afford to pay for services have little access to them. Hospitals and physicians do not see palliative care as a revenue-generating specialty and therefore are not interested in this area.
Existing Palliative care programs are struggling for resources and funds to survive.
Accomplishments in collaboration with the institutions in India:
Distinction between euthanasia, physician assisted suicide and withholding/withdrawal of treatments was made clear during the workshops.
Legal and ethical issues in palliative and end-of-life care were discussed in detail and Participants gained an insight into the various aspects of palliative care.
A collaborative process was initiated along with the EPEC project for adaptation of the EPEC curriculum as a teaching tool in India and for future workshops. The feasibility is being studied and should be underway within this year.
A process for inter-society collaboration for the study and issue of joint statements regarding ethical and medical issues in end-of-life care was initiated.
Awareness was created about the mechanism established by the IAHPC and AIMS whereby interested physicians could go for further formal training in palliative care to AIMS under an IAHPC scholarship. None of the participants were aware of this scholarship prior to the workshops.
Provided several books on palliative care to each of the institutions I visited during my trip to India.
Future Follow-up Plans:
Efforts are underway to identify a core group of physicians and other experts who would be willing to pursue a long-term focused plan through regular visits to centers in India and aid in sustained development with the aim of starting programs that will be able to achieve self-sustainability within a reasonable period of time.
I hope to be able to visit India again within the year to follow up on this plan. In the meantime technology and the internet have enabled us to keep in touch very cost-effectively.
To work collaboratively with the palliative care physicians and policymakers in India to make opioids other than morphine also available since only the cheapest (morphine) and most expensive (fentanyl) potent opioids are currently available in addition to a few weak opioids.
Acknowledgements:
IAHPC for their relentless pursuit of improving palliative care education and availability across the world and for their Traveling Fellowship program and the grant without which much of this would not have been possible.
Dr. Meenakshi Goyal - Khemka for her support.
Dr. Sean O’Mahony, Director of Pain and Palliative Care at Montefiore Medical Center
Dr. Lyla Correoso, director of VNS New York’s Hospice Program in the Bronx.
Nancy Dubler, the Division of Bioethics at Montefiore Medical Center and the faculty of the Certificate Course in Medical Ethics and Humanities at New York University.
Dr. Arjun Rajagopalan, my host and medical director at Sundaram Medical Foundation and the faculty there.
Dr. Ram Rajagopalan, President of the Indian Society of Critical Care Medicine
Dr. T. Madhu for logistical support in India
Dr. M. R. Rajagopal, Dr. Gayatri Palat and the faculty and residents at Amrita Institute in Kochi, Kerala
Mr. K. K. Mehta, Dr. Y. P. Bhatia, Mr. Lokesh Bhalla and the administration and faculty at Rajiv Gandhi Cancer Institute in Delhi
Dr. Anjum Joad and other faculty at Bhagwan Mahaveer Cancer Hospital in Jaipur
Dr. Manjula Krishnaswamy, the nuns, nurses and staff at Jeevodaya hospice in Chennai.
The faculty, staff and residents of Barnard Institute of Radiology and Oncology, Madras Medical College.
