The following organisations are engaged in the promotion of palliative care in India:

Indian Association of Palliative Care (IAPC)

The IAPC was formed at an inaugural conference held at Banaras Hindu University, Varanasi, 27-29 Jan 1994.⁷² The IAPC now hosts an  international conference every year, and publishes the Indian Journal of Palliative Care bi-annually. Online access to the journal was launched to celebrate the first World Hospice and Palliative Care Day (8th October 2005). In the second edition of the journal⁷³ the IAPC goals are stated as:

1. Education for professionals, government and the public so that the emphasis is on providing oral morphine, common medicines for symptom control and palliative care for terminal cancer patients in urban as well as rural areas of India.
2. Emphasis for better quality of life till death in terminal cancer patient rather than prolong the life with curative treatment.
3. Since most of the psychological support is provided by the family members to the terminal cancer patient in India, educating the family members should be emphasised.

The Indian Journal of Palliative Care provides an important mode of communication and discussion regarding palliative care in India. The editorial board includes both Indian and international palliative care experts and the editorial policy of the journal is to emphasise a multidisciplinary approach to palliative care. There are a broad range of contributors and articles are published on a variety of subjects: primary research; symptom management; the concept of palliative care; case reports; models of palliative care; and service delivery.

The IAPC has had a key role in developing palliative care in India and has focused particularly on morphine availability and education and training.⁷⁴ A decade after the formation of the Association, Dr Stanley Macaden reflects at the 12th IAPC conference in 2005.⁷⁵ He takes the view that the IAPC has made ‘reasonable progress’ (p.1) and highlights the following areas as important to palliative care development in India:

• Learning from the Kerala experiences
• Improving morphine availability
• Including palliative care in medical, nursing and allied to health curricula
• Capacity building through doctor training
• Evaluation of existing services
• Data collection and analysis
• Research
• Awareness building to promote palliative care

At the 13th IAPC conference in 2006,⁷⁶ which was titled ‘Pain and Beyond’, the emphasis was upon the psychosocial and spiritual aspects of palliative care. Dr Rajagopal in the opening keynote speech states that palliative care practice must:

Recognise not only the importance of spiritual support, but also the danger of confusing it with religious support and the danger involved in its delivery in a multi-religious community.⁷⁷ (p.5)

Professor Saraswathi Devi, Kidwai Memorial Institute of Oncology Bangalore, Karnataka, south India outlines her perspectives on the challenges for the IAPC:

From this to the next ten years we have to work towards including  palliative care in the medical curriculum, that is the goal. Once it is included all the doctors will know about it: nurses will start practising in their own areas. That is the next challenge of our IAPC is to include in the curriculum, so as to reach palliative care to the community, to grass-root level. That is the first thing. The second thing is we must make opioids available to all the centres. Ten states have implemented the rules, amended the rules, but the implementation is still a problem. So, unless we keep on striking: at least ten states we have amended, the rest of the 19 states will follow this. So by conducting in various places or conferences, those people I think that they get motivated and do this work. Next year we are conducting our conference at the North-East Frontier, I don’t know if you know Assam, it is the first time we are ever going to the North-East Frontier. All the seven states, we don’t, nobody knows about what is happening in those states: I think it is a great move, that we have to support the organising secretary and do it. And we must call the drug controller and Government officials for the conference and make them sensitised. These are steps we have to take.³⁹

As Professor Devi indicates, the IAPC annual international palliative care conference is an important event because it brings together palliative care practitioners and activists from across the country. It provides a forum for debate, to develop networks, as well as an environment to learn from others’ experiences of delivering services. In addition, Dr Sukdev Nayak states that, “the role of IAPC conferences in developing palliative care activities in a geographical area is immense. The conference helps to identify the champions of palliative care in that region. The policy makers are made aware”.⁴⁴ In the following interview extract, Deepa Muthaiya, Chair of the DEAN Foundation in Chennai, Tamil Nadu, south India, talks about the importance of the conference to the initiation of this service:

After registering the Trust on the 9th March 1998, now what happened was February the following year I attended my second IAPC Conference, the first one was in 1998 February in Bombay after which I registered the trust and then the next year in February again I attended this conference in Calicut where Doctor Rajagopal was at the helm of affairs and I had a talk with him about all that we wanted to do and he said “Why don’t you start small, just bite as much as you can chew, having a service right round the clock might be just too much, immediately”. So he talked about the WHO model, which they were following and that kind of struck me as the best model to adopt. So that is how we decided that we would have an out patient service supplemented by home care, that’s how we got down to thinking of that model and that’s how we got started.⁴⁶

The IAPC also encourages state or city palliative care associations such as the Chennai Association of Palliative Care (CAPC). The CAPC was constituted in 2001 to enable the coming together of all palliative care enthusiasts in the city of Chennai and the state of Tamil Nadu. The CAPC organised the 13th International Conference of the Indian Association of Palliative Care in 2006.⁷⁶ Dr Mallika Trivadanan, Lakshami Pain and Palliative Care Clinic, Chennai, explains the motivation behind the CAPC: 

We all got together and formed the Chennai Association of Palliative Care, we said we must have an academic body and we must be complementary to each other. There’s no point each one trying to do the same thing. And one of the association, the Dean Foundation, does home care and outpatients, and so if I can’t reach some patient of mine on the outskirts of Chennai, I refer them to the Dean Foundation. So we joined together with other doctors, professionals and we formed the Chennai Association, which is a chapter of the Indian Association of Palliative Care. So we registered and through that we have conducted about four or five workshops so far.⁷⁰

Christian Medical Association of India (CMAI)⁷⁸

The CMAI is a registered voluntary society and the official health arm of the National Council of Churches in India (NCCI). It consists of a network of over 350 institutional members including:  hospitals; health centres; community health programmes; and Christian Medical Colleges in Vellore and Ludhiana. There are over 5000 individual members of the organisation, from a range of professions e.g. doctors, nurses, allied health professionals, health administrators and chaplains 78. The CMAI has been involved in the area of palliative care since the early nineties.  It has held a series of workshops, supported institutional visits, structured capacity building and has an active mentoring process. This has helped centres in states of Karnataka, Kerala, Madhya Pradesh and Tamil Nadu  to establish.^79-83 Dr Stanely Macaden, Medical Director at Bangalore Baptist Hospital, Karnataka, south India explains the role of the CMAI in developing the service:

I joined the Baptist Hospital in Bangalore as a physician, and have been working there since then. And as a Mission Hospital our, one of our emphases has been to see how we can provide holistic care, and I think in 1995, after following a retreat on holistic care, we thought we must seriously get involved in practising that in our hospital, and palliative care seemed to be an ideal platform for doing that. So we started a support team in the hospital, and then God opened various doors for us, you know, through friends from the UK, through CMAI, the Christian Medical Association of India - they had brought resource people like Gilly Burn and Dr Twycross and others - and that opened out opportunities for training at Oxford and further going on to more specific training, like the Diploma in Palliative Medicine.⁷¹

The current focus of the CMAI’s work is building and developing professional involvement in palliative care.⁷⁹ In partnership with the Institute for Palliative Medicine, (PPCS) Calicut, Kerala, they run the Fellowship in Palliative Medicine, a distance-learning programme which aims to train doctors to provide palliative care services.⁸⁴ In a special edition of the Christian Medical Journal of India devoted to palliative care,⁸² Dr Vijay Aruldas explains the purpose of the training programme: ‘so that we have a group of individuals who are interested, are supported by peers and others from the network, and where possible an interest group within an institution who can play a consultancy and advocacy role’ (p.23).⁸³ Dr Joe Varghese, programme-director of the CMAI outlines their current objectives:

Our main concern is to develop these hospitals or to develop these mission institutions to take up this palliative care and then the church to be involved in it, so for example, the Calicut model of NNPC it is possible that we can have this kind of setting in the Northeast because there is a lot of community participation in the Northeast and since they’re lacking in, in palliative care as of now and with so many of our member institutions being there, if you can start somewhere there, a hospital based with community participation, that kind of thing, it would be applicable in those particular areas. Like for example, in the Northeast we have the Baptist church who has 6 institutions, member institutions which are in hospitals spread all over the Northeast, so if we go through the church, the board, it will be implicated in all the six hospitals.⁷⁹

Cancer Relief India (CRI)

This charity is an independent voluntary organisation established in March 1990 by Gilly Burn who is a trained nurse. CRI works closely with WHO and had the support of Dame Cicely Saunders. The aims of the charity  are:

1. To educate doctors and nurses in India about palliative care and its importance for those suffering from advanced cancer
   
   
2. To provide practical relief from the distressing symptoms of cancer patients, by the provision of pain clinics, drugs and relevant equipment.⁸⁵

Gilly Burn has travelled extensively throughout India teaching palliative care in both hospitals and rural areas since 1989.^86,87 From 1993 to 1995 the charity led a major project funded by Cancer Relief Macmillan Fund to give specialist palliative care training to doctors and nurses in India.⁸⁸ The educational aims of the charity are met partly by peripatetic teaching and partly by sponsoring Indian health professionals to attend specialist palliative care training in the UK. Many palliative care professionals in India stress the importance of the palliative care training and support they received from Cancer Relief India. With a small amount of resources CRI has been extremely influential in developing palliative care in India. As Gilly says in her own words ‘it is hard but there is no doubt about it individuals do make a difference but they do need a nucleus of support’.⁸⁷ The achievements of CRI include^2,85:

• First CRI pain clinic established in Thrissur, Kerala in 1992
• In 1994 the palliative care clinic at the Medical College in Calicut was established and CRI contributed half the cost of the clinic.
• Funding for professionals, doctors and nurses, to train in the UK (e.g. Diploma of Palliative Medicine – University of Wales; Diploma in Palliative Nursing – Oxford Brookes University)
• Support for health professionals to attend international meetings
• Provision of new syringe drivers to some centres
• Provision of palliative care material (including the Oxford Textbook of Palliative Medicine) donated to institutions across India
• Subscriptions to palliative care journals are donated to major cancer hospitals in India
• Translation of  WHO educational material

The following extracts from health professionals illustrate the significant influence CRI has had on the development of hospice and palliative care in India:

Initial footsteps, are difficult, the initial few steps they require support: after that it just jumps and grows up fast. So the initial stepping of course we had very good international faculty. Miss Gilly Burn who has brought this concept to India: but for her I think we wouldn’t have spread this message, and she is like a nightingale: she went to every Institute and spoke about palliative care, whether the oncologists liked her or not.  I still feel that, but for Gilly, we wouldn’t have got into this. Then Robert Twycross; then Jan Stjernswärd is the person who thought about India - even now he thinks so much about India. And David Joranson who has done a remarkable work: he has helped with opioid availability, simplification of the regulations, he was the person who was instrumental.
Professor Saraswati Devi, Kidwai Memorial Institute of Oncology, Bangalore, Karnakata, south India³⁹

But another major influence was Gilly Burn. In those days when we used to talk about a lot and say things like how absurd the medical system was and how we were not doing the right thing with the patients, we still didn’t have a sense of direction, but I went to attend a workshop in Trivandrum which was conducted by Miss Gilly Burn of Cancer Relief India. All of a sudden several things became clearer to me: that was, though I had some sort of nebulous idea from Robert’s book, it was then that the concept of palliative medicine became a bit clearer to me. And then we continued to talk it over between us and we decided to do what we could: we decided to form the Pain and Palliative Care Society and register the organisation. And then Gilly again helped: she took me on a course to Oxford which was very helpful for me - a ten-weeks course - and she also gave some money. She gave us around 100,000 rupees, which had no tax attached: she said use it on what you think best, and that’s something that kicked the ball, and that was one of the beginnings of our organisation.
Dr Rajagopal, Amrita Institute of Medical Sciences, Kochi, Kerala, south India⁸⁹

We used to visit at the All India Institute of Medical Sciences they had started there, the anaesthetist there had started a palliative pain clinic. In recognition of the fact that the majority of patients were presenting with late stage disease and pain was a very important symptom and the oncologists were really not ready to take that on and they decided they had a role to play, but it was very much in terms of nerve blocks and things like that, not really the kind of palliative medicine one talks about today.  But there were one or two people there who were picked up and were identified, I think by Gilly Burn, by Dr Robert Twycross and did the Oxford Course and then came back and had been exposed to palliative care.
Hamarla Gupta, CanSupport, Delhi, north India²⁵

UK Forum for Hospice and Palliative Care Worldwide⁹⁰

This group, formed in 2001 to support the development of palliative care in resource poor countries, falls under the umbrella of Help the Hospices (UK). Since its inception support has been offered to India via several funds and initiatives (Table 10). Help the Hospices is currently offering support to the Indian Association of Palliative Care (IAPC) for the development of their organization capacity and strategic planning.

Table 10 UK Forum for Hospice and Palliative Care Worldwide funding initiatives by state

Source: UK Forum for Hospice and Palliative Care Worldwide, electronic  communication

World Health Organisation

The WHO has been supporting the development of palliative care in India since the early 1980s. There has been a particular focus on training, education and opioid availability. The former WHO Cancer and Palliative Care Unit, headed by Professor Jan Stjernsward (1980-1996), formulated and implemented an action programme which made pain and palliative care a priority in cancer care programmes especially in developing countries like India.⁹¹ Professor Stjernswärd describes his rationale:

What motivated me to make pain and palliative care a priority in the WHO cancer programme, when reorienting it as newly appointed Chief of Cancer in 1980, was the suffering I saw in my African patients at the Kenyatta National Hospital, Nairobi, Kenya, when doing clinical research there in the mid-1960s…The great majority of the patients, however, where late-stage incurable solid tumours, to whom offering therapies was like peeing in the desert, you go five metres and on looking back you see no trace, no effect. I realized that the most relevant human and pragmatic thing to do would be to offer pain relief as an integrated part of any comprehensive cancer control effort.⁹¹

WHO, for example, worked  in association with Cancer Relief India (CRI) and Dr Robert Twycross to organised lectures and clinical training throughout India. From 1993 to 1995, a project in association with Cancer Relief Macmillan Fund enabled doctors and nurses to undergo specialist training  in palliative care in the UK. Professor Jan Stjernsward  and David Joranson from the Winsconsin-based Pain and Policy Center/WHO Collaborating Centre have worked in conjunction with the Indian Association of Palliative Care and Indian government and state officials over a number of years to improve morphine access in the country.⁶⁵ In 1995, WHO designated the Pain and Palliative Care Society, Calicut a demonstration project for providing cost-effective community-based home care for late stage cancer patients and later as a source of national expertise and leadership in opioid availability, especially in the use and control of morphine.⁹² Dr Rajgopal explains the importance of this alliance:

We were partners to a great man, David Joranson, who has done one of the  most meaningful works in palliative care as far as our country is concerned, and many parts of the country, world, are concerned. I met him first at a meeting in Oxford, I think it was in 1995 or so, it was a consensus meeting on cancer pain, organised by Robert Twycross in Oxford. So I met David there, actually he sought me out and talked about this, and he was already trying to get the government of India interested in improving access to opioids. Between 1991 and that time I found from the records that there had been numerous government-sponsored workshops in palliative, on opioid availability and palliative care, mostly stimulated by Dr Jan Stjernswärd and later on by David Joranson.⁸⁹

Professor Jan Stjernswärd is now International Director of the Oxford International Centre/WHO Collaborating Centre which aims to deliver education, training, and research in palliative care. Under the direction of Dr. Robert Twycross, the Centre works to raise the standards of palliative care throughout the world by providing assistance with training in palliative care to a growing number of overseas partners, among which are the Pain and Palliative Care Society in Calicut Kerala.

The International Association of  Hospice and Palliative Care (IAHPC)⁹³

The IAHPC seeks to increase the availability and access to high quality hospice and palliative care for patients and families throughout the world.  They do this by promoting communication, facilitating and providing education, and by becoming an information resource for patients, professionals, health care providers and policy makers around the world. The IAPC electronic Newsletter has 365 subscribers based in India and an average of 550 hits are recorded from India per month on the IAHPC website.⁹⁴  It has offered support to palliative care development in India through  four programs (Table 11):

• Clearing House Program: Donation of books and journals to programs, libraries in hospitals, hospices and universities. More than 10,000 lbs of books and journals were sent in 2005 to more than 400 recipients around the world
• Travelling Scholarship Program: provides financial assistance to individuals working in palliative care, so they are able to attend a major palliative care meeting, educational seminar, course or conference.
• Travelling Fellowship Program provides financial assistance worldwide to palliative care professionals who accept invitations to teach palliative care in developing countries where the host organization could not otherwise afford such services.
• Faculty Development Program: Provides financial assistance to pay for the full time salary of a palliative care faculty position in a teaching hospital or medical university during 4 years.

Table 11 IAHPC funding programs by state⁹⁴