Hospice and palliative care services in India are provided by a mixture of government organisations, non-government organisations (and private institutions). This section gives some examples of the services which have been provided by these different organisations.

Non-Governmental Organisations

Neighbourhood Network in Palliative Care, Kerala

At the beginning of the 1990s, north Kerala did not have palliative care facilities. There was an outpatient pain clinic at the Regional Cancer Centre in Trivandrum in south Kerala. In 1993, a small group of doctors and social activists, all personally involved in the terminal care of cancer patients, organised an outpatient palliative care service at Calicut Medical College in northern Kerala, providing for both the physical and emotional needs of patients. It aimed to be free and accessible to poor patients. The motivation for the clinic was that:

‘Experience over the last decade has shown that copying the western hospice system in its entirety is not practical in India. For cultural, economic and social reasons, India needs a system adapted to the Indian scenario’³ (p.293).

The clinic opened with a part time doctor and two volunteers.¹¹³ The first three years of the clinic was a ‘trial run’ and intended to ‘identify the problem areas, to modify the system and to evolve a model of palliative care suitable for the region’³ (p.294). A non-governmental organization, the Pain and Palliative Care Society (PPCS) was formed and in June 1996, the homecare service was set up with the aim of ‘delivering palliative care to the patients who are unable to reach the hospital, to empower patients to care for themselves and to empower the family to care for patients’¹⁹ (p.451).The homecare service was delivered by a doctor and a few trained volunteers. In the first year of operation the homecare team made 340 visits and concluded that home-based, volunteer-delivered palliative care may be the most suitable way to deliver palliative care to people in need in Kerala.

The success of the home care programme led to the Neighbourhood Network in Palliative Care (NNPC) initiative in 2001. This is a joint venture with four NGOs which attempts to develop a sustainable 'community led' service capable of offering comprehensive Long Term Care (LTC) and Palliative Care (PC) to those in need.¹¹⁴ In this program, volunteers from the local community are trained to identify problems of the chronically ill in their area and to intervene effectively, with active support from a network of trained professionals. Essentially, NNPC aims to empower local communities to look after the chronically ill and dying patients in the community.¹¹⁵ NNPC programs have been exceptionally successful in all the places where they have been launched. In Malappurum, a poor district in Kerala with a population of four million, where the program was first 'ground tested', the coverage of LTC and PC rose to 70% in two years.¹¹⁵ There is an NNPC clinic roughly every 10 km which means patients should not have to travel more than 5 km. Dr Kumar Suresh, one of the founding members of the NNPC, speaks about its progress:

It took us ten years to evolve this concept and I don’t know whether in another two or three years we may come across something better, but at the moment we feel that sort of now we are in the sort of right direction. All these years we’ve been doing the work and but many of us had a feeling that it was inadequate, this is not the way to reach the majority of the people. Now we are feeling that probably this is the right direction, that the sort of community - it may have its own problems and it’s too early to say, but already the coverage has gone up so much, and then  now, in addition to looking after the patients already referred to them, they find new patients, talk about palliative care to other people, talk about what’s being offered, they act as  representatives of the palliative care movement in the community.

Guwahti Pain and Palliative Care Society

The Guwahati Pain & Palliative Care Society (GPPCS) in Assam, North East India  is a good example of the ways in which palliative care services have developed in different states and provinces. It illustrates the impact of the Kerala based model of palliative care in other parts of the country. A registered NGO, it was the first service in NE India proving palliative care to people with advanced cancer. The GPPCS is now run by its 27 members including 3 doctors, 2 nurses, voluntary nurses, 30 volunteers and an office assistant. It started initially with a weekly outpatient clinic providing free care and established a home care service in June 2001. The service was successful and expanded by using training volunteers. GPPS now has established link centres in three towns in Assam (Rangia, Digboi and Hojai). Dr Dinesh Goswami, a founding member of GPPCS outlines its success:

To start with, people didn’t know anything about that and particularly when we were thinking to start a centre in Guwahati, people, many people actually they - quite senior to me of course, they were opposing the thing in some way or other and didn’t want to accept the thing, and at that time I had a very hard time to consult these people, but in due course we started the clinic and Dr Bhagabati joined me in this and we started other clinics and getting more and more patients,  with the drugs we really need and slowly our activities took off and people are accepting now and gradually those people actually in the initial phase who were not so interested to have such thing in Guwahati are also coming to help us and encouraging us.⁵¹

CanSupport

CanSupport, Delhi started in 1997, it was the first palliative care home care support service in north India. This organisation, founded by Hamarla Gupta, now provides free home-based palliative care, day care and counselling services for patients and their families. Currently, CanSupport has three trained home care teams which comprise of doctors, nurses and counsellors trained in palliative care. In addition to the home care programme, CanSupport has recently started a day care service for people with cancer and their families. On Fridays, the Day Care Centre is a place where home-care patients can come to relax and give their carers some respite. A counsellor and nurse are present and a doctor is on call. Volunteers manage the day and are trained to offer companionship to those who come. Mondays are reserved for children with cancer.  Since 2002, they have run an annual foundation day training on palliative care with the Institute Rotary Cancer Hospital.^24-26,116 In the following extract Harmala Gupta expresses her hopes for the future of  CanSupport:

I think the future is really to have more local based clinics and I’d like to see a relationship developing with local practitioners in different areas.  It is not possible for us to be there 24 hours, but the local doctor is there, the local GP, and if we could identify people there we could then draw into our network who could provide that back up locally when patients need it, so I think that is really on the agenda that’s something we need to build.  And I’m sure that there are some like minded people out there who would be willing and who would want to assist in this effort, the question is just getting in touch with them.²⁵

Karunashraya Bangalore Hospice Trust

Karunashraya Bangalore Hospice Trust is a 55 - bedded hospice with a homecare service and hospital facilities nearby. Mr Kishore Rao, the founder of the hospice, outlines its success:

Once a year, on the 1st November every year, the state gives awards in various fields: it could be the arts, it could be education, it could be sports, it could be medical care. In all these fields they give an award for the most outstanding work that has been done in each of these fields. In medical care we were recognised on 1st November 2004, as giving outstanding care, within palliative care. This is something that we are very proud of because we didn’t approach the government, we didn’t approach the government for anything, including funding. The fact that they chose us for this, the fact that it was given to us without our approaching them for it, I think that’s a tremendous recognition of the work that we have been doing…and another major recognition for us was the fact that within five years of our activity they chose  to give us that award…But the other recognition that we get is when patients come to us of their own accord: when there’s been no occasion for us to approach the patient but the patient has heard of the service that we’ve given and comes to us. Maybe from a neighbour or maybe from a friend, or maybe another relative who’s been looked after by us. So it’s this word of mouth which brings patients to us: that’s another tremendous recognition for us, which are all measures of success, and I think we are very proud of this fact.⁸

Government organisations

There have been three government-funded centres which have been successful at providing and  developing hospice and palliative care provision in India: Kidwai Memorial Institute of Oncology, Bangalore; Trivandurum Regional Cancer Centre, Kerala; and Tata Memorial Cancer Hospital, Mumbai. Some of these successes are described here:

To work here we feel very happy because we are important to the people. From morning ’til night we see any number of patients and we relieve the patients’ suffering, and we help them out in many ways with the help of the volunteers also, taking them and bringing them, giving them help. Apart from your doctor, well, you know, medical work of relieving the pain alone, and other aspects also we take care of. As a team member, as a leader, I feel very happy because in the morning I call volunteers to take care of the patients, to take them to the radiotherapy department and get their radiotherapy done, so I’ve counselled the patient, and, you know, speaking about spirituality to that 23-year-old man, and various other jobs we are doing here, apart from a doctor. So amongst the non-medical people also, with so many volunteers around, at the end of the day we feel very happy, and by evening, 4 o’clock, when we go for rounds, patients whom we have seen in the morning, when we see in the evening, when they see that we have made a change in them, that makes me happy.
Dr Saraswati Devi, Kidwai Memorial Institute of Oncology.¹⁰⁸

We have been able to train a sizeable number of doctors who have gone through the one month hands on training, which equips them to stock morphine. And we also have frequent training programs, one day, two day, three day, short training programs. We have quite a large number of nurses who have been trained. And this message of palliative care I think has already become a movement in our state. And we even have medical students coming during their third year, and people are aware about this philosophy of palliative care. And I think we have made substantial inroads into the health care system. The very fact that awareness has been created is a big bonus.
Dr Cherian Koshy, Trivandurum Regional Cancer Centre.⁵⁶

In numbers I won’t say that we have succeeded like you know, I can’t say oh we’ve done or had so many patients, but I think in each and every patient that we have taken on, we have really tried our very best to do a holistic approach and having then gone into all their social and financial and psychological problems we have, you know, encountered huge problems and we were able to settle a lot of them, I think in that sense you know the concept of holistic care has been introduced into common practice has been a very huge success and the second thing I think is our educational programmes, I think that, you know, the fact that we are able to now start referring patients to people who have set up, even if it’s in a small way, their own centre so that patients can then avail of facilities closer to their homes, I think that I would also call another success, and the third success maybe would be the fact that we have so many volunteers who come on their own, nobody needs to be coerced into coming and joining us, you know, whoever comes and joins us is happy in our one big family and they really get motivated to work and we have so many volunteers, I don’t think any other organisation has or even department has that, that number of committed volunteers.
Dr Mary Muckandan, Tata Memorial Cancer Hospital²⁸