In India, we have identified over 138 organisations providing hospice and palliative care services in 16 states or union territories (Table 1).  These services are usually concentrated in large cities and regional cancer centres, with the exception of Kerala, where services are more widespread. There are 19 states or union territories where we found no evidence of palliative care provision (Table 2).

Hospice and palliative care services in India are found in settings that include: regional cancer centres; free-standing hospices; government and private hospitals; and outreach clinics, day and home care services run from other designated buildings (e.g. health centres, schools). The majority of these services can be characterized as: inpatient provision (in hospices or hospitals); outpatient clinics (in hospitals and a variety of settings); and homecare services (run by hospitals, hospices or volunteer networks). These services include the following activities:

• Inpatient care
• Home care
• Out patient clinics
• Paediatric palliative care
• Hospital support
• Education and training
• Bereavement care
• Counselling
• Day care
• Psycho-social family support
• Orphan children support

Table 1 Palliative care provision in India by state/union territory

Table 2 States/union territories in India without identified palliative care provision

Hospice based palliative care services

We identified 23 free-standing hospices located in 12 states/provinces (Table 3). These provide in-patient facilities and in many cases a homecare service also. Most of the hospices are only for cancer patients but a minority care for people with AIDS, TB or other life limiting illnesses.

Table 3 Hospice provision by state/union territory

In India stand-alone hospices are important because they provide care for marginalised groups such as the destitute, homeless, and those with disfiguring and offensive wounds. Dr Firuza Patel, a radiation oncologist based at Chandigarh Hospice in Northern India describes the importance of inpatient hospice provision to her palliative care (homecare service):

When we started the home care I think we were very happy initially because we were looking after more patients, but we had a few patients who needed admission, because they had a massive bleed or a respiratory problem and, even though the family had been told and they were aware of it, naturally the family did panic and they wanted medical attention. So they would come to the hospital emergency because that is where our patients come, or they would go to a private nursing home. And there the families realised that their patients were put under a lot of unnecessary investigations; unnecessary medications; drips started; tests done. So the family at that time used to come back and tell us that they were probably having feelings of guilt that they had not kept the patient at home and taken them to the hospital, because they felt that the last moment, or the last few hours, when the patient should have been comfortable he was subjected to these unnecessary battery of tests and investigations. So therefore we felt that it was very important that we could admit these patients somewhere. In the Radiotherapy Department we have only few beds, which are required for active anti-cancer treatment. So we needed a hospice and this was our major problem when we started the home care.  Another problem we have is that the majority of our patients come from outside Chandigarh: I guess 70 per cent of our patients travel more than 100 kilometres to come to us. And these patients required admission which we could not offer them for their symptom management: we could not take them in the home care because they were beyond the limits of our home care. So that is why we were lucky again that we got this building from the Governor then, who understood the need for it.⁷

Similarly, Mr Kishores Rao, managing trustee of Bangalore Hospice Trust, Karnataka, south India, explains the role of the hospice:

What we offer to every patient that comes to us is …. complete care from the day they are discharged from hospital until after the bereavement visit, so when we look after them at home we do all that I described a little earlier. When care at home becomes a little difficult, especially from the medicines point of view, as the disease advances, as the end nears, we have to give them painkillers round the clock and all that palliative care needs to do for them, and when we find that the family is not coping or the patient is in particular distress, then the home care nurse offers them the facility of the hospice and she tells them about the hospice, shows them pictures and persuades the relatives to come and see the work we are doing in the hospice, and leaves it to them to decide whether they want to come in or not. Nine times out of ten …. they do want to come in and they come in as inpatients to us. What is particularly persuasive is that we look after them round the clock, so medicines and things can be done, you know, even through the night and things, which family members can’t often manage. So we get them in here and, once those distressing symptoms are controlled by us - for example the pain is under control, maybe the vomiting has been stopped - once that happens we give them the choice of continuing to stay with us or whether they want to go home, and we offer them the care of the home care team at that stage. Very often we find that patients want to go home because that’s where they want to die, but when, again when the, a second time, when the symptoms become distressing, they want to come back. We’ve had the patients coming in three and four times before they pass away. So that’s the pattern that we follow, and our care ends really after the bereavement visit that the nurse makes when the patient has died and the burial is over.⁸

An example of hospice care for people with HIV/AIDS is Arulagam Hospice (House of Grace) in the state of Tamil Nadu, south India which was opened on the 25th April 1998. The hospice developed from the work of the Association of Arulagam in Pasumalai, Madurai where socially disadvantaged women and their children were cared for and rehabilitated. They have room for 28 adults and approximately 14 children. The doctor visits the hospice one day a week as well as running an outpatient clinic. The service is currently funded by the Tamil Nadu State AIDS Control Society. ^9-11 Charlet Soundavarajan, the hospice Superintendent, outlines her beliefs about the future of the hospice:

Caring is one side, the other side we have to teach. That’s the only thing that can save people, teaching them all the aspects. Professionals, educated people, all the sectors, the teaching will go to the grass root level, prevention, care and everything. Otherwise we can’t save the people. First we thought care is important and we went into the society, now we feel that it’s necessary to teach people, especially youth about sex, sexuality, protected sex and all these things. Otherwise within few years India is going to be like Africa.¹²

Some hospices in India are closely associated with hospitals. Hospice facilities may be built near to the hospital or within hospital grounds. For example, Vasna Hospice in Ahmedabad, Gujarat is a 10 bed hospice (5 cottages with 2 beds in each) and is affiliated to the Gujarat Cancer Research Institute (GCRI) and patients are referred only from GCRI.¹³

Hospital based palliative care services

In India, we identified approximately 47 hospitals, in 12 states/provinces, which provided palliative care services at varying levels (Table 4). Hospital-based palliative care services include: outpatient clinics; in-patient facilities; homecare; counselling and bereavement support; paediatric palliative care; and training and education (Table 5). Hospitals may be government or privately run and many have religious backing such as the Christian Medical Association India, Hindu and Sikh organisations and the Orthodox Syrian church.

Table 4 Hospitals with palliative care by state/union territory

Table 5 Examples of palliative care services provided by hospitals

Dr Anjum Kahn explains how the palliative care clinic operates in Bhagwan Mahaveer Cancer Hospital and Research Centre, Rajasthan, north west India:

Primarily I am an anaesthesiologist, so I am working in theatre all the time I have theatre every day. We have patients referred to us for pain management and palliative care management and we see them during our, well I have a resident with me if I am busy in theatre she sees the patient first and then as I get free I see the patient and then if she needs admission we always have room/bed for admission.  I must say that we’ve never had to fight for a bed space, we’ve always had availability, nobody has ever told us “you can’t admit a palliative care patient”, I mean they may not have been delegated palliative care beds initially but now we’ve also got them. So whenever we need to admit a patient, we can admit the patient and then we can see them, we have morning and evening runs to see the patient and whatever we can do.¹⁴

The homecare service operated from Jawaharlal Nehru Cancer Hospital and Research Centre, Madhya Pradesh, central India is described by Dr Aarti Patel:

Our palliative care team comprises of a doctor, one or two social workers and a nurse then a driver. A doctor always goes because we are of the opinion that in India unless a doctor goes the patients are not relieved, they think that nurses they can only talk they can’t you know, they can’t sort of take care of us and what we realised at certain places that even once a week is also not sufficient. If there was some person who has a wound which needs to be cared for and dressed. I think more than one visit a week is required but we cannot, I mean looking to our staff and limitations of transportation and it’s very expensive, petrol and all is very expensive in our country so one driver, one vehicle and one team of doctor and nurses… So I wish that we have more resources so that we could employ more people, we could have a separate ambulance, we could have a separate vehicle for this.¹⁵

Mr Surendra Shah is a volunteer at Tata Memorial Cancer Hospital, Mumbai, Maharashtra, central India. He outlines the unique contribution of volunteers to the palliative care services:

The purpose of starting this was to give emotional support because that is lacking in any hospital you will find a lot of medical people, they will give you the medication, they would treat you, they would do everything but from the emotional support point of view they do lack. So we thought that it would be a good idea to start this with a view to giving more emotional support. We went from patient to patient, talked to them, we didn’t have this room then we were just you know, coming here going from wards to wards, to the departments, talking to the doctors, talking to the patients, more importantly talking to the patients’ relatives because we often see that alright they are looking after the patients’ necessities, patients’ needs but we are not looking after the care-giver who needs emotional support as much or more sometimes than the patient.¹⁶

Home care palliative care services

In India, we have identified 88 homecare programmes (Table 6), 63 of these services are based in the southern state of Kerala which has been extremely successful at developing a community participatory model of palliative care. Homecare services in India may be found operating from hospices, hospitals, health centres or other settings/buildings. They are provided by a range of professionals such as doctors, nurses, social workers as well as by volunteers. The services included in Table 6  are specific homecare programmes rather than services which may provide occasional home visits.

Table 6 Home care services by state/union territory

Palliative care services in India have to serve high-density populations, the majority of whom are living in impoverished circumstances, across huge geographical areas. A characteristic of the palliative care services that have been developing is the increasing number of home care services which are able to reach large numbers of people. This home-based provision relies on the strength of family support in India.¹⁷ Dr Rajagopal¹⁸ states:

Our suffering people need a system of palliative care delivery that is suited to our social and cultural milieu. It has to be inexpensive; we cannot possibly have enough expensive inpatient facilities for a million people. We can learn from the hospice system of the West, without duplicating it in its entirety. We have a strong point in our favour and that is the family structure in India. People generally prefer to live and die at home. If we have a system of delivery of palliative care based on treatment at home, with the relatives being empowered in the care of the patient, it has a definite chance of succeeding (p.66).

Dr Rajagopal and  Dr Suresh Kumar are founding members of the non-governmental organisation ‘The Pain and Palliative Care Society’ (PPCS). This organisation was established in Calicut, Kerala in January 1994 as an outpatient clinic with the aim ‘to evolve a model of palliative care suitable for the region’(p.294).³ The homecare service was initiated in June 1996 and made 340 visits in the first year of operation.¹⁹ Wanting to expand the palliative care services to reach more people in need, they developed a concept of palliative care which focused upon the empowerment of patients and their families; and a system of service delivery which relies on community participation. They named this the ‘Neighbourhood Network in Palliative Care’(NNPC). The phenomenal success of this model of care has resulted in a network of 63 palliative care clinics across Kerala, providing care free of charge to patients in need. In an interview in January 2005, Dr Suresh Kumar reflects on ten years of developments in palliative care in Kerala:

What has been happening over the last years, I think that the definite trend as far as Northern Kerala is concerned, is palliative care moving out from the institution into the community, and this has been happening much faster than even some of us who are part of it expected. And from ’93 when the first palliative care clinic was started in Calicut, it was a very much institution-based, doctor/patient model. We, had a few volunteers but they were doing odd jobs, you know, odd nursing jobs after training, and the whole team was centred around the doctor and there was some support from the community, financial, like some of the donations. Now we have reached the stage where most of the care is delivered in the community and the doctor in many palliative care units in northern Kerala is somebody who looks after or takes care of the physical problems, and most of the other issues like social support, the spiritual issues, other emotional problems are taken care of by the volunteers. Most of the units now are run by the local groups and they employ the doctor, that’s against the earlier clinics initiated by doctors and the volunteers and other people acting under him.²⁰

Mr Babu is a coffee planter and volunteers for Kalpeta NNPC, Wynad, Kerala. At the time of this interview, the NNPC group had been running for eight months with one nurse who trained at the Institute for Palliative Medicine, Calicut. There is a scarcity of doctors in the area because they are not well paid and they were waiting for a doctor to complete training in Mumbai.²¹ Mr Babu explains the role of the volunteer:

They can console the family to boost their morale, this thing is more important because the patients which we go and see are very, very poor, the rate of survival is a problem. More than the medicine they need the moral support and the financial help, that is what they need - so I collect money also from others.²²

Alice Shajan is a NNPC volunteer in Nadavayal in Wynad district, Kerala. She talks about the difficulties of the patients for whom she cares:

Sometimes they cannot eat their food we are giving them money or medicine, take your medicine before, after lunch or after meals but they don’t have meals at all, we will have to give them the money for food  and sometimes that don’t have even clothes or even to dress their wounds, all that thing we have to do. Even sometimes their wounds will be very bad and some of the people will not take any care to the patients, they just neglect the patients… And sometimes they have misunderstandings.  Some people believe that it is a contaminated disease and will also have this or they don’t or they don’t want to suffer the smell or their pain, all these things. So they are particularly indifferent to the patients and they leave them in some sort of the corners of the house, somebody will do like that but some people can do or they can help their patients but they don’t have money, their son or daughter has to go to work to bring some money for their family - so they have to leave this patient here alone.²³

A different model of home care has been developed in Delhi, north India. CanSupport started in 1997, it was the first palliative care home care support service in north India. This organisation, founded by Hamarla Gupta provides free home-based palliative care, day care and counselling services including bereavement support for patients and their families. CanSupport has four trained home care teams and each comprises of doctors, nurses and counsellors trained in palliative care. They visit the homes of approximately 80-85 patients with advanced cancer each week.²⁴ Family members are trained in simple nursing tasks so they can keep the patient comfortable until the next home visit. Their patients are referred from the pain and palliative care clinic, Institute Rotary Cancer Hospital, All India Institute of Medical Sciences, and doctors from other cancer institutions. In the following extract Hamarla Gupta speaks about what palliative care means for the CanSupport homecare teams:

Yes, just an enormous problem, any area you touch there is a problem, which is why we have as you suggest gone beyond the traditional palliative care support and provided dry rations, dried food rations to people, sometimes help with transportation, we provide them with all kinds of medical aids.  Really I think we also perform a much needed social function, because families tell us that even their relatives have stopped visiting them.  We realise there is so much ignorance around cancer a number of people believe it is contagious and they stop visiting, children are kept away, from the person who is sick because there is this odd fear that perhaps a child is more vulnerable and they may catch it.²⁵

Paediatric palliative care services

In India, children are usually cared for within the generic palliative care services. However, we identified three organisations attempting to offer distinct paediatric palliative care services:

• CanSupport, New Dehli, North India
  One day a week CanSupport provide a day care service for children with cancer, who are being treated at the Institute Rotary Cancer Hospital, and their parents. Volunteers manage the day, the children are encouraged to play and parents are able to exchange experiences/emotional support.^24-26


• Arulagam Hospice (HIV/AIDS), Tamil Nadu, South India
  This hospice provides two houses for destitute children who are HIV positive, where they are cared for by a trained child care worker and have a wide programme of activities. Those who are school age and are well enough attend the local school.^{10, 12, 27}Charlet Soundavarajan, the hospice Superintendent describes caring for a boy with AIDS:

  I remember there was a boy, nearly fourteen years old. He was very poorly and he was suffering from a stroke, he can’t walk properly. And he told me that ‘I didn’t, done anything you know. Because of my parents I am suffering’. He lost his parents, he wants to communicate to me that he’s suffering because of the parents, so he wants me to tell them that he’s a good boy. So here the feeling that, people may think that he was very bad. So I said ‘No, you are a very good boy’. And still he’d die, he’d say ‘I’m a good boy’. And he wants to prove that he’s a good boy. So that struck me a lot, so we are thinking how we can give counselling to these children. The innocent children, they want to prove that they’re innocent.¹²

• Tata Memorial Cancer Hospital Palliative Care Clinic, Mumbai, Maharashrtra, Central India
  The palliative care clinic in this hospital runs a paediatric outpatients clinic twice a week with a full palliative care team including a doctor, nurse, social worker and clinical psychologist 28. Dr Mary Muckaden and her team started the clinic in late 2002. In 2003, the clinic had seen 100 children, aged between 2-15 but these numbers are small compared to adults. Some childhood cancers were rare and many of them familial. Frequently, more than one child was affected within the family. Dr Muckadan outlined in a paper at the 11th Indian Association of Palliative Care Conference that paediatric palliative care services must address the issues of childhood as well as the issues of illness, and how to maximize the child’s potential within a life-limiting condition.²⁹

  Mrs Sumita Jadhar is a medical social worker at the clinic she explains her work:

  Working with children, the prime concern is not of the patient if the child is very small it is the parents who have a lot of concerns as to how they would manage the child, what would be the lifespan of children, like once they know that a child is advanced, the first thing they would like to know is about the kind of emergencies that they would face that is the end of life, what kind of end it will be of the child, whether it will be very painful, how easy it will be and how early or how late, like what would be the rough estimated life of the child, those are the prime concerns expressed by parents.  Together with pain management of course, how do they manage the child at home, how do they take care of the child and the problems that they would encounter while they go back home, because our patients are only one visit patients, they all come from outside. The times that we spend with them, in an hour or two hours we have to deal with all the issues if they are leaving immediately that evening or the following morning, but if the child is a local from Bombay we do give a lot of time and then divide issues and cater to them.³⁰

There is an increasing awareness among palliative care professionals of the importance of addressing children’s end of life needs particularly in the light of growing numbers affected by HIV/AIDS.³¹ Sandeep Kumar Dey warns ‘It is now the right time for pediatricians  to learn the art of end-of-life care, as they will have to face many challenging situations in the near future’(p.1047)³²

HIV/AIDS Services

Palliative cares services in India are mainly provided for cancer patients and provision for people with HIV/AIDS is very limited.³³ Where HIV/AIDS has received attention from health professionals or officials, it has been focused upon increasing awareness of the disease, prevention and more recently antiretroviral therapy.³⁴ Some hospice/palliative care services care for HIV/AIDs patients as well as those with cancer e.g. Neighbourhood Network in Palliative Care, Kerala. In addition, we identified four hospices which specifically care for people with HIV/AIDS:

• St Ignatius Health Centre (10 beds), Hyderabad, Andhra Pradesh
• Samraksa AIDS/HIV Hospice, Bangalore, Karnataka
• Arulagam Hospice (HIV/AIDS) (20 beds), Tamil Nadu
• Community Centre & Hospice for People Living with HIV/AIDS, Chandigarh

Dr Anuradha Sowani from the Cipla Centre for Palliative Care in Cancer, Pune, Maharastra, central India describes some of the challenges of HIV/AIDS in India:

Well that’s a very sensitive issue. As you know our trust is called the Cipla cancer and AIDS foundation but as you see we only deal with cancer patients that was a considered decision because there is so much of stigma attached to AIDS that wherever there are AIDS patients exclusively other people just won’t go and cancer patients won’t come because everybody else would think that they had got AIDS and their family would be shamed and all that. So it was decided that two separate centres, you know one for AIDS and one for cancer.  The cancer centre is started, the one for AIDS will start later on but the figures for AIDS are mind boggling, they really are frightening, they’re all over and you know not just little pockets in metropolitan cities it’s all over and palliative care there is really needed but I can see the problems also at the moment the money is actually coming from sort of philanthropic donors and AIDS has no glamour, people don’t want to be associated with it either so I wonder how much  money it actually can expect from these sort of sources. So again it either has to be international funds or government funds but the AIDS scenario is really bad. Every year you hear larger and larger figures.³⁵

Patient statistics

Statistics of the numbers of patients treated by hospice and palliative care services are not collected at a national level in India. There are no available national demographic data about which patients are accessing services or how patients are referred to services. Individual services do suggest that referral comes from both formal mechanisms e.g. though attendance at an outpatient’s clinic, and word of mouth where patients relatives request the service, or patients self-refer. Most hospices and palliative care services do keep records of patient activity, albeit often using different parameters. Table 7 has some examples of patient activity levels in these services.

Table 7 Examples of service-based patient activity

Service name	State	Patient Activity	Time period
Guwahati Pain and Palliative Care Society	Assam	6200 outpatient consultations 250 homecare visits36	5 years
Chandigarh Hospice	Chandigarh	OPD  Homecare   Hospice  283           97            165  425          106           236  597          112           36237	2003 2004 2005
Bangalore Hospice Trust	Karnataka	Hospice    Homecare 552             134 436             88 511             82 384             108 182             16838	2003-4 2002-3 2001-2 2000-1 1999-00
Kidwai Memorial Institute of Oncology, Dept. of Anaesthesiology and Palliative Care	Karnataka	6000 patients outpatients and inpatients39	Annually
Areacode Palliative Care Clinic, Areacode Palliative Care Association	Kerala	15 new patients40	Monthly
Pain and Palliative Care Clinic Anwar Memorial Hospital	Kerala	400 patients registered in the clinic41	Aug 2002 – 31st Jan 2005
Pain and Palliative Care Society Palliative Care Clinic Edakkara	Kerala	No. patients registered 68 125 14 16 other patients42	2003 Dec 10-31 2004 2005 Jan 1-20
CanSupport	New Delhi	117 homecare patients43	Current at 07.02.05
A. H. Regional Cancer Centre, Dept. of Anaesthesiology and Palliative Care	Orissa	2421 outpatient          consultations 513 inpatient admission 146 homecare visits 155 nerve blocks44	2004-2005
Acharaya Tulsi Regional Cancer Treatment Centre & Research Institute	Rajasthan	1584 outpatient clinic 1783 905 26245	2004 2003 2002 2001
DEAN Foundation Hospice and Palliative Care Centre	Tamil Nadu	No. patients registered Cancer       = 572 HIV/AIDS = 7 Others        = 153 TOTAL      = 73246	4 years 3 months (to 25.01.05)
Sudharsana  Hospital	Tamil Nadu	300 Patient outpatients and in-patients47	2003-2005

Challenges to Palliative Care Development

Challenges facing palliative care development have been stated to be:

Social and economic challenges:

• Poverty
• Geographical distances (reaching rural communities)
• Population density
• Low indices of nutrition and health
• Low levels of literacy in many states
• Low status of women
• Cultural perceptions of cancer, HIV/AIDS
• Lack of funding for services
• No state-sponsored social security system or effective medical insurance scheme
• Lack of awareness of palliative care and cancer symptoms within the population

Dr Stanely Macaden,⁴⁸ Dr Reena George,⁴⁹ Dr Majula Kishnaswamy,⁵⁰ and Hamarla Gupta²⁵ speak of some of these social and economic challenges:

Well, the major challenges have been, first of all, acceptance by other colleagues of what we are doing, but that has not been too difficult because, as a small set-up and having kept it integrated right from the beginning, our colleagues have understood what palliative care is all about, and they are now very helpful and cooperative. The other challenges are the varied socio-economic situation in India, you know, we have very, very poor patients and we have also very well-to-do patients and trying to address the needs of all of them at different times is stressful because the approach of an educated person, you know, he has got ten questions and you have to answer and help them with all those ten questions.  The poor patient may not ask too many questions but he needs the care and you need to spend a lot of time with them trying to explain things to them.  So there are, the care is the same but, you know, we have to spend time and meet their needs accordingly.
Dr Stanley Macadan, Bangalore Baptist Hospital, Karnataka, south India

When we started we had enough funding to appoint one person and we had to think long and hard about whom to appoint.  Finally,  we chose to appoint a social worker because we felt that for most of our families the biggest issue was that when the breadwinner died there was nothing for the family to survive on, and for many patients who were dying, more than their pain and symptom control, it was how could they find some sort of income for their family.  Also my own training has been entirely hospital based and I thought a social worker could really bring in the community side of things.  So then in May 2004 we appointed  our first social worker who was Mr Ramu. He was the first full time paid palliative care person in CMC.
Dr Reena George, Christian Medical College, Vellore Tamil Nadu, south India

Many of them are orphans, destitute but then even people with families people who are very poor like right now I have a patient who’s brought his mother against his own inner feelings for the simple reason that he lives with her, in a house with about 10 other families and they are objecting to having his mother in the house because of her foul smelling tumour and so he’s forced to bring her here.
Dr Majula Kishnaswamy, Jeevodaya Hospice, Tamil Nadu, south India

Cancer still carries a stigma in our country unfortunately.  When we started our visits we were very conscious not to use the word cancer on the vehicle, and that’s the reason why we chose the name CanSupport because it doesn’t necessarily suggest cancer right away.  But even then very often, there are times when we were requested to park our vehicle a little way away and come in, and certainly none of us wears a white coat or anything because that would immediately alert people around that there was a problem.  So there is this need to hide it, the need for secrecy.
Hamarla Gupta, CanSupport, New Delhi, north India

Medical challenges:

• Opioid availability  
• Opiophobia - Fear of the use, practice and administration of opioids from within the medical profession
• Late presentation of illness
• Psychosocial needs neglected in busy, over-loaded clinics
• Open communication between patient, family and health professional is limited.
• Disclosure of diagnosis to patient
• Lack of  palliative care awareness within the health professions
• Embedded culture in oncology of ‘curing’
• Absence of palliative care in medical curricula
• Multiple & competing health systems e.g. Biomedicine, Ayurveda, Homeopathy
• Reimbursement for medical and health staff
• Growing need for measures of quality assurance in palliative care ‘hotspots’
• Lack of palliative care facilities for AIDS patients
• Limited research because of lack of resources (time, finances, knowledge, motivation)

Dr Mary Muckandan,²⁸ Hamarla Gupta,²⁵ Dr Bhagabati⁵¹ and Professor Kishnan Nair⁵² articulate some of the medical difficulties they encounter:

Morphine is very easily available to us and it’s not at all expensive because it’s on an average of 1 rupee for 10mgs, per tablet or 10mgs. The problem is availability out of the city of Bombay because I’m sure as you’ve been hearing wherever you’ve gone in the rest of the country, morphine availability is a huge problem and because the narcotic drugs, psychotropic substances act of 1985 made it so stringent for the medical profession to hold a license for morphine, most people have found it easier to just dispense with holding morphine and just try and use substitutes which doesn’t work because the substitutes are very much more expensive and of course not as efficacious. So there’s a huge problem and the only way that we can get round it over here is  we are trying to amend the act but to be very frank it doesn’t seem to work in the state of Maharashtra.
Dr Mary Muckadan, Tata Memorial Cancer Hospital, Maharashtra, central India   

One of the first things a family tells us, when we enter is, “don’t tell the patient, that they are that sick, they don’t know”, and we can understand their concern but we do make it clear to the family that we won’t insist on giving information but should the patient ask we have a duty to answer as honestly as we can.  And that’s what we do, and the families themselves realise that it’s a relief for them and for the person to know what they’re up against. Finally that something that’s been there but hasn’t really come out in the open is now out in the open.  But we realise that we can’t do this immediately we must build up our rapport with the family slowly, get their confidence up and they realise now that at least they can turn to someone should there be a crisis.  So that makes our task a little easier, but there is no doubt that there is a lot of denial.  And I think even within the team, because we come from that society, there is this belief that perhaps we should not be telling people everything, and that hope needs to be meeting something.  So it’s a debate that even occurs within the team.
Hamarla Gupta, CanSupport, New Delhi, north India

Yes, actually most of the persons come to our clinic are really in the late stage. They have got so many difficulties like they have some problems - defined problems, physical, emotional, everything, and it is easier to deal with the physical symptoms rather than the emotional and associated problems.  You see a lot of people from different cultures at the centre, could be confused about their life so you have to be aware of what they need and what they want.
Dr Bhagabati, Guwahati Pain and Palliative Care Society, Assam, north west India.  

If we could start palliative care during the under graduate programme ……… a younger student has a much kinder and compassionate mind so they may probably take it. Otherwise it’s a very difficult to, get this idea, this year one of the oncologists in this hospital called me and told me she happened to hear a lecture of Doctor Raita Loper, she was terribly impressed by that and she probably wanted palliative care to be started in her division, so that is there, it rarely happens that somebody, what do you call it? - accepts these ideas.
Professor Kishnan Nair, Trivandrum Regional Cancer Centre, Kerala, south India

National and policy challenges:

• Government (in)action
• Limited national palliative care policy
• Need for funds to be allocated for palliative care
• Strategic planning
• Institutional policy to promote palliative care services

Health professionals active in developing palliative care in India have attempted to press the central government to design and implement a national palliative care policy.⁵³ Rajagopal and Venkateswaran³⁴ state that:

Government action will require public or professional pressure. Without government involvement, development of the speciality of palliative care at the national level will be seriously hampered. It is essential for nongovernmental organizations to work with government if we are to effect substantial change. It is necessary to assess needs in the areas of drug availability, education and policy and to develop plans of action dictated by the need. It is also essential to develop some system of quality assurance (p. 127).

In the National Medical Journal of India, Dr Rajagopal¹⁸ (p. 66-67)writes:

It is time to start a national campaign to help a million people suffering people. A three-pronged approach to palliative care is needed:

1. A national palliative care policy and a system for its implementation;
2. Educating professionals and the public about the need for palliative care. Palliative care must be included in the medical and nursing curriculum;
3. Improved drug availability

Opportunities for Palliative Care Development

• Government/WHO interactions
• Enthusiasm of activists
• Growing public and medical acceptance of palliative care
• Palliative care ‘hotspots’
• Rise in volunteers
• Families and communities in support  
• Success with a system based on outpatient care and empowering families to care for patients at home
• Developing palliative care services in rural India
• Community ownership of palliative care/ Community participation
• Expanding and adapting the western concept of palliative care
• International support – e.g. hospice twinning, training, education
• Collaboration between services  

While the challenges to developing hospice and palliative care provision in India are multiple and complex, there are a number of positive trends which provide opportunities for potential improvement in end of life care. Deepa Muthaiya, Chair of the DEAN Foundation Hospice and Palliative Care Centre, Chennai, Tamil Nadu, south India describes the increasing palliative care awareness within the medical profession:

We desperately need another doctor, full time because the patient case load is increasing and our doctors are not able to cope - so though we’re willing to give salaries that are much higher than other institutions, nobody wants to work in the area of palliative medicine, they don’t want to train in it and they don’t want to work in it…What we have noticed is that at least young doctors are practising palliative medicine, the philosophy of palliative care wherever they are working. They have not dedicated themselves totally to a career in palliative medicine - no, not so far. But at least whatever they are doing, whether it’s surgery, paediatrics or whatever, they are willing to dedicate part of their time to palliative care - that’s a big difference.⁴⁶

A significant strength of palliative care development in India has been volunteer and community involvement. Dr Firuza Patel, Chandigarh Hospice, Chandigarh, north India describes the community effort involved with the hospice:
 
We would say that we’ve been accepted so well in the community and that is the major success. When we started this we had assured the Administration that, besides the salary, this should become a community project, and we’ve been able to do that. The drugs for the patients are given on donation by a chemist; the food as I said is all given by the temple next door. Volunteers come in free; milk comes in free. Like you’ve seen, towels, beds, mattresses, TV, washing machine, everything on donation. So I think that has been our greatest success, that we have been able to be accepted in the community.⁷

Similarly, Sister Aleya Kattakayam explains how the community is integral to the future plans of St Ignatius Health Centre, a ten-bedded hospice in Hyderabad, Andhra Pradesh, south India:

We, as we started our hospice, we started some collection. We went round collecting some money from our own local people, we collected some money that we put it for these hospice people because we have to pay the staff who are working there and we have to provide the meals for the patients, everything. So we collected something so we expect some donation from some people locally, we get something, and we are doing. And we are going to make it like this drop-in centres, that’s what we are planning for - drop-in centres where patients can come, maybe stay one day when they are really not well and go home next day. So that’s what we are planning to start with.⁵⁴

In some places in India where palliative care has been growing and developing for a number of years, practitioners are adapting the concept of hospice and palliative care from western models and debating what constitutes the most appropriate form of  palliative care for the Indian cultural context. The Calicut Declaration of 1997 demonstrates this with its emphasis upon ‘Asian solutions to Asian problems’(p.1207).⁵⁵ Dr Cherian Koshy, Trivandrum Regional Cancer Centre, Kerala, south India states:

I always feel that the palliative care that we hear that is happening in developed countries, in North America, Europe and the hard ground realities that they encounter in Africa or Asian countries is quite different. And to translate what we read through books that are originated in Europe or the conferences or the training programs that have been in developed countries, that translation of those facts into reality in our set up may take time…We need to have frequent training programs dedicated to the set up and the cultural background of such poor nations, where poverty is one of the main stumbling blocks. A person or a family which cannot afford money to buy food, we can’t expect them to be part of a treatment policy which takes, which makes a big drain on their resources. It has to be completely shifted when we talk about palliative care in less privileged, resource scarce nations and set ups.⁵⁶

After attending an international workshop on Community Participation in Palliative Care in Manjeri, Kerala in 2004, Harmala Gupta⁵⁷  wrote in the International Journal of  Palliative Nursing:

What I found confusing was that the specialists in palliative care from the West, who regularly participate in these workshops and offer training, are really quite forgiving when it comes to India. They, too, are willing to measure the effectiveness of a programme by the number of people it covers rather than by the quality of care it offers. And yet these are the very people who stress the need to develop palliative care as a speciality in our medical schools and treating institutions.