INDIA

The republic of India (population

estimated to be between
1,049,549,000 (WHO) and
1,080,264,388 (CIA)) is located
in Southern Asia, bordering the
Arabian Sea and the Bay of
Bengal, between Burma and
Pakistan and covers an area of
around 3,287,590 square
kilometres. It is bordered by
Bangladesh, Bhutan, Burma,
China, Nepal and Pakistan.

New Delhi is the capital of India,

which consists of 28 states and 7
union territories(marked with*):
Andaman and Nicobar Islands*,
Andhra Pradesh, Arunachal
Pradesh, Assam, Bihar,
Chandigarh*, Chhattisgarh,
Dadra and Nagar Haveli*,
Daman and Diu*, Delhi*, Goa,
Gujarat, Haryana, Himachal
Pradesh, Jammu and Kashmir,
Jharkhand, Karnataka, Kerala,
Lakshadweep*, Madhya Pradesh, Maharashtra, Manipur, Meghalaya, Mizoram, Nagaland, Orissa,
Pondicherry*, Punjab, Rajasthan, Sikkim, Tamil Nadu, Tripura, Uttaranchal, Uttar Pradesh, West
Bengal.

According to the United Nations human development index (HDI) India is ranked 127/177
countries worldwide (value 0.602). This places India in the group of countries with medium human
development 1.

It is estimated that one million new cases of cancer occur each year in India, with over 80%
presenting at stage III and IV 2. Experience from cancer centres confirms that two-thirds of patients
with cancer are incurable at presentation and need palliative care 3-5 and approximately one million
people are experiencing cancer pain every year 6. It is difficult to assess the exact requirement for
palliative care because of inadequate disease registration, communication problems and the cultural
stigma attached to cancer and HIV/AIDS.

PALLIATIVE CARE SERVICE PROVISION

Current services

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
1
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

State/union territory No. orgs Inpatient provision Outpatient provision

Hospice Hospital Homecare Day care /

clinic
Andhra Pradesh 3 1 2
Assam 5 4 5
Chandigarh 3/4 2 1 1 1
Goa 1 1
Gujarat 3 1 1 2
Karnataka 5 2 2 2 4
Kerala (by district)
Alappuzha 2 1 1 1
Calicut 15 1 13 13
Ernakulam 5 2 3 3 5
Idukki 3 1 2 2
Kannur 4 1 3 4
Kollam 1 1
Kottayam 3 2 1 2
Malappuram 20 20 20
Palakkad 5 4 5
Thrissur 5 5 5
Trivandrum 9 3 1 2 5
Wynad 11 11 8
TOTAL (for Kerala) 83 9 6 65 71
Madhya Pradesh 6 3 3 6
Maharashtra 5 2 1 4 4
New Delhi 3 1 2 2
Orissa 1 1 1 1
Punjab 1 1
Rajasthan 5 1 2 4
Tamil Nadu 12 4 5 6 7
Uttar Pradesh 1 1
West Bengal 1 1 1
TOTAL 139 24 22 89 112

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

State/union territory
Andaman and Nicobar Islands
Arunachal Pradesh
Bihar
Chhattisgarh
Dadra and Nagar Haveli
Daman and Diu
Haryana
Himachal Pradesh
Jammu and Kashmir
Jharkhand
Lakshadaweep
Manipur
Meghalaya
Mizoram
Nagaland
Pondicherry
Sikkim
Tripura
Uttaranchal

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

State/union territory Hospice name No. beds

Andhra Pradesh St Ignatius Health Centre Hospice 10
Chandigarh Chandigarh Hospice 20
Community Centre & Hospice (HIV/AIDS) 10
Goa Shanti Avedna Sadan 6-10
Gujarat Vasna Hospice 10
Karnataka Karunashraya Bangalore Hospice Trust 55
Samraksa AIDS/HIV Hospice No data
Kerala Adimali Pain & Palliative Care Centre/Hospice 20
Assisi Hospice and Palliative Care Centre 40
(Alappuzha)
Word & Deed Hospice (Kottayam) 40
CSI Hospice 40
Guidance Centre (independent hospice) 8
Holy Cross Hospice 50
Indian Orthodox Church Hospice 50
Karunya Hospice (Orthodox Syrian Church) 70
Madhya Pradesh Jawaharlal Nehru Cancer Hospital and 20 approx.
Research Centre Hospice being built
Maharashtra Shanti Avedna Sadan 50 approx.
New Delhi Shanti Avedna Sadan 40
3
Rajasthan Kailshanker Durlabhji Avedna Ashram No data
Tamil Nadu Arulagam Hospice (HIV/AIDS) 28 adults
14 child
Geobodia Hospice No data
Jeevodaya Hospice 50
Raksha Hospice No data
West Bengal Ruma Abedona Hospice 10 approx.
TOTAL 24 hospice services

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
4
 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

State/province Name of hospital

Andhra Pradesh Gandhi Hospital and Secunderabad
MNJ Institute of Oncology and Regional Cancer Centre
Assam Dr B Borooah Cancer Institute (Regional Cancer Centre)
Haji Abdul Majid Memorial Hospital & Research Centre,
Chandigarh Post Graduate Institute of Medical Education & Research
Gujarat Rajasthan Hospital
Gujarat Cancer Research Institute
Karnataka Bangalore Baptist Hospital
Kidwai Memorial Institute of Oncology
Kerala KVM Hospital, Alappuzha District
Medical College, Calicut
Shifa Hospital, Calicut
Lisa Hospital, Calicut
Anwar Memorial Hospital, Ernakulam
Amrita Institute of Medical Sciences (AIMS), Ernakulam
St Georges Hospital, Ernakulam
Malankara Orthodox Syrian Church Medical Mission Hospital, Ernakulam
Alphonsa Hospital, Idukki District
5
 Government Hospital, Kannur District
Medical College, Kannur District
St Camillus Hospital, Kannur District
Thengana Medical Mission Hospital & Research Centre, Kottayam District
PHC Govt Hospital, Valancheri, Malappuram District
PHC Govt Hospital, Kunnumpuram, Malappuram District
Karuna Hospital, Palakkad District
Ansar Hospital, Thrissur District
District Hospital, Thrissur District
CSI Hospital, Trivandrum
Dr Somervell Memorial Hospital, Trivandrum
Trivandrum Regional Cancer Centre
Madhya Pradesh Jawaharlal Nehru Cancer Hospital and Research Centre
Gwahor Cancer Hospital and Research Centre
Padhar Hospital
Maharashtra Salvation Army Evangeline Booth Hospital
Tata Memorial Cancer Hospital
New Delhi Institute Rotary Cancer Hospital
Orissa A. H. Regional Cancer Centre
Rajasthan Sanchetee Hospital & Cancer Institute
Santokba Durlabhji Memorial Hospital
Bhagwan Mahaveer Cancer Hospital and Research Centre
Acharya Tulsi Regional Cancer Treatment and Research Institute (Regional
Cancer Centre)
Tamil Nadu Sundaravadanan Nursing Home (private hospital)
CSI Hospital
Christian Medical College & Hospital
Sudharsana Hospital
G K N M Hospital
Uttar Pradesh Aastha - Centre for Geriatric Medicine, Palliative Care Hospice & Hospital
SS Hospital, Banaras Hindu University

Table 5 Examples of palliative care services provided by hospitals

State/union Hospital Service provision Staffing Levels

territory
Chandigarh Post Graduate Institute of
Medical Education &
Research
Karnataka Kidwai Memorial Institute
of Oncology
Dept. of Anaesthesiology
and Palliative Care
Kerala Amrita Institute of Medical
Sciences (AIMS)
Department of Palliative
Outpatient clinic 6 days a 2 doctors on rotation
week 1 nurse
Homecare & bereavement 1 social worker
service 1 clinical
Education & Training psychologist
20 beds, bereavement 34 volunteers
service, day care centre, 3 doctors
education, training 4 nurses
2 pharmacists
1 social worker
1 clinical
psychologist
1 physiotherapist
Outpatient clinic 6 days a 4 senior doctors
week, treats 20 patients a 2 junior doctors
day (average). 6 trainee doctors
Inpatient facility with Medical students

6
 Medicine around 20 patients 3 nurses
homecare visits 5 days a
week, visiting 4 patients a
day (average)
Training and education
programme
Madhya Jawaharlal Nehru Cancer Outpatient clinic 12 doctors (on
Pradesh Hospital and Research 10 in-patient beds rotation)
Centre Weekly homecare seeing 6/7 nurses
3-4 patients 3/4 social workers
Hospice (being built) 1 counsellor
Maharashtra Tata Memorial Cancer Outpatient clinic 3 doctors
Hospital Homecare 6 days a week 1 nurse
In-patient beds available 1 paediatric nurse
Palliative Care Clinic Education & training Social worker
programme 20-25 volunteers
Orissa AH Regional Cancer Center 15 bedded inpatient ward
Outpatient clinic 6 days a
Dept. of Anaesthesiology week
Homecare visits on call
Training and education
programme
Rajasthan Bhagwan Mahaveer Cancer Outpatient clinic 3 doctors on rotation
Hospital and Research In-patient beds available
Centre

Pain Clinic (no distinct

department)

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
7
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

State/union Service name No.

territory services
Assam Digboi Pain & Palliative Care Society 4
Guwahti Pain and Palliative Care Society
HAMM Hospital Pain and Palliative Care Society
Rangia Pain and Palliative Care Society
Chandigarh Chandigarh Hospice 1
Karnataka Bangalore Baptist Hospital 2
Karunashraya Bangalore Hospice Trust
Kerala
- Alappuzha KVM Hospital 1
- Kozhikode City PPCS 12
Pain and Palliative Care Clinic (x4)
Daya Pain and Palliative Care Clinic
Grace Palliative Care Clinic
Kozhikode Initiative in Palliative Care
Lisa Palliative Care Clinic
Santhwanam Pain and Palliative Care Clinic
Shifa Hospital Palliative Care Centre
Yesu Bhaven Pain & Palliative Care Centre
- Ernakulam Anwar Memorial Hospital 3
Amrita Institute of Medical Sciences (AIMS)
Pain and Palliative Care Society Clinic, St Georges Hospital
- Idukki Alphonsa Hospital 2
Santhwanakendram Pain and Palliative Clinic
- Kannur Pain and Palliative Care Clinic, Payyannur 3
Government Hospital
Malabar Cancer Centre
8
- Kottayam Pain and Palliative Care Clinic 1
- Malappuram Pain and Palliative Care Clinic ( x 10) 19
Santhwanam Pain and Palliative Care Clinic (x 2)
AreaCode Palliative Care Clinic
Edavanna Palliative Care Association
Karuna Pain and Palliative Care Clinic (x 2)
Karunya Pain and Palliative Care Clinic
Malappurum Initiative in Palliative Care
Nilambur Palliative Care Society
- Palakkad Pain and Palliative Care Clinic (x 3) 4
Thanal Pain and Palliative Care Clinic
- Thrissur Ansar Hospital 5
Health Care Institute
Medical College Thrissur
Pain and Palliative Care Clinic, PHC
Thrissur Pain and Palliative Care Society, District Hospital
- Trivandrum Trivandrum Regional Cancer Centre 2
Care Plus
- Wynad Daya Pain and Palliative Care Centre 11
District Hospital, Mananthavadi
Good Shepherd Hospital
Govt. Hospital
Jyothi Pain and Palliative Care
NNPC Nadavayal
Samskara Palliative Care Unit
Santhwanam Pain and Palliative Care Clinic
Shanthi Pain and Palliative Care Unit
Swami Vivekananda Medical Misson
Vimala Marry Mission Hospital -------
TOTAL 63
Madhya Pradesh Jawaharlal Nehru Cancer Hospital and Research Centre 1
Maharashtra Cipla Centre for Palliative Care in Cancer 4
Salvation Army Evangeline Booth Hospital
Shanti Avedna Sadan
Tata Memorial Cancer Hospital Palliative Care Clinic
New Delhi CanSupport 2
Rotary Cancer Hospital Pain Clinic (with CanSupport)
Orissa Cancer Care Every Where 1
Tamil Nadu Christian Medical College & Hospital 6
CSI Hospital
DEAN Foundation Hospice and Palliative Care Centre
Jeevodaya Hospice
Lakshami Pain and Palliative Care Clinic
Goodalloo Palliative Care Network
West Bengal Ruma Abedona Hospice 1

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 Rajagopal 18 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
9
 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

10
 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

11
 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
12
 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 Assam 6200 outpatient 5 years
Care Society consultations
250 homecare visits 36
Chandigarh Hospice Chandigarh OPD Homecare Hospice
283 97 165 2003
425 106 236 2004
597 112 36237 2005
Bangalore Hospice Trust Karnataka Hospice Homecare
552 134 2003-4
436 88 2002-3
511 82 2001-2
384 108 2000-1
182 168 38 1999-00
Kidwai Memorial Institute of Karnataka 6000 patients outpatients Annually
Oncology, and inpatients 39
Dept. of Anaesthesiology and
Palliative Care
Areacode Palliative Care Kerala 15 new patients Monthly
40
Clinic, Areacode Palliative
Care Association
Pain and Palliative Care Kerala 400 patients registered in the Aug 2002 – 31st
Clinic clinic 41 Jan 2005
Anwar Memorial Hospital
Pain and Palliative Care Kerala No. patients registered
Society 68 2003 Dec 10-31
Palliative Care Clinic 125 2004
Edakkara 14 2005 Jan 1-20
16 other patients 42
CanSupport New Delhi 117 homecare patients Current at
43
07.02.05
A. H. Regional Cancer Orissa 2421 outpatient 2004-2005
Centre, Dept. of consultations

13
 Anaesthesiology and 513 inpatient admission
Palliative Care 146 homecare visits
155 nerve blocks44
Acharaya Tulsi Regional Rajasthan 1584 outpatient clinic 2004
Cancer Treatment Centre & 1783 2003
Research Institute 905 2002
262 45 2001
DEAN Foundation Hospice Tamil Nadu No. patients registered 4 years 3
and Palliative Care Centre Cancer = 572 months (to
HIV/AIDS = 7 25.01.05)
Others = 153
TOTAL = 732 46
Sudharsana Hospital Tamil Nadu 300 Patient outpatients and 2003-2005
in-patients 47

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 Gupta 25
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.
14
 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 Bhagabati 51 and Professor Kishnan Nair 52 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

15
 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
Venkateswaran 34 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 Rajagopal 18 (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;

16
 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
17
 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 Gupta 57 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.

Reimbursement and funding for services

In India, medical insurance does not play a significant role in hospice and palliative care provision.
Services are funded in a range of ways including: central government; state government; NGOs;
indigenous-fund raising; private companies; medical and pharmaceutical companies; private
individuals and international donations. Many services rely on buildings provided by government or
private hospitals but then have to generate their own funds to secure food, drugs, medical supplies
and equipment and some salaries. As a consequence, funding is, in the main, a continual source of
concern and is often identified by service providers as a limitation upon service expansion. Dr Mary
Muckandan outlines the ways in which the palliative care service at Tata Memorial Cancer Hospital,
Mumbai, Maharashratra, central India is funded:

We make sure we have enough funds because we have a lot of donors who come forward and
help out in many, many ways. It’s all sorts of people, there are individuals who just come and
deposit a 500 rupee note in the medical social department and say “please use it for something”.
Things come in kind, all sorts of things, food grains, fruits, vegetables, you name it and
someone has come and donated it and of course yes there are a lot of companies. Because a lot
of the work is not so much for palliative care as such but for chemotherapy of which many will
be palliative, but there are companies who are willing to fund, so a lot of money is raised from
companies, directly, they pay directly into an account set up for the patients for cancer

18
 chemotherapy, if any of those patients turn palliative then we would be able to use those funds
from those 28.

Dr Cherian Koshy describes the ways in which Careplus, the NGO which provides homecare
services from Trivandrum Regional Cancer Centre, Kerala, south India generates funds:

The other organisation is Careplus, and their focus is on home care of cancer patients who are
too poor to travel, or too sick to travel. The per capita income of an average Indian is 250 US
dollars, US dollars. And the Careplus, their aim is to identify at least four hundred donors, well
wishers who could donate a thousand Indian rupees. That comes to around 25 US dollars. And
with that money they can run this home care program supporting the salary of a doctor, a nurse,
fuel for the ambulance, buying dressing materials and the medicines that are needed for home
care. And home care is a very good humanitarian service that they are doing, palliative care is
taken to the doorstep of the really poor cancer patient 56.

The difficulties of raising funds are explained by Deepa Muthaiya, Chair DEAN Foundation,
Chennai, Tamil Nadu, south India:

There’s nothing sustained, nothing continued and Government funding is almost nil, not almost
- it’s just nil because the Government doesn’t believe in palliative medicine or funding for
palliative medicine they’d rather pay for an orphan child’s education or something like that
they think is more constructive - you see? So, funding is very difficult, we do not have
fundraisers because whenever I approach somebody to conduct an event, open up a show for us,
they say - “ Oh! It’s very difficult because nobody has heard of the Dean foundation”..And
our volunteer force is not a consistent group of people in terms of commitment and time; they
have their own busy schedules, which means we are just a skeleton and it would be just too
much for us to handle. Our day to day admin work and medical work itself is just too much - so
we don’t have the time for that. So many times we have thought that we should have a fund
raiser in terms of somebody who would be paid on a salary and will only do fund raising but
we don’t have the money to do that, you know, so it’s like the chicken or the egg situation .
And all our work is free, we give free care 46.

The Malappuram Initiative in Palliative Care in Kerala, south India (Malappuram has a population
of approximately four million) which is part of the Neighbourhood Network for Palliative Care,
successfully raises funds through small community donations. Initiatives include: all buses entering
Nilambur bus station contribute two rupees per day; students contribute a rupee every month as part
of ‘Palliative Care in Campus’; and regular collections are held at celebrations and festivals 58. Dr
Numpelli Mathews, the Programme Executive for the Neighbourhood Network for Palliative Care
in Malappuram explains:

On a whole 95 per cent of the money spent in Malappuram is being raised from there itself, in
nine months in Malappuram itself they are raising about one million, one million rupees from
their own area. One hundred thousand people are participating in raising this one million
rupees, mostly very small donations, not very large grants, they’re small donations like one
rupee donation boxes placed in shops and houses. Then 50 rupees per month subscription, 100
rupees per month subscription. Then from the students, 2 rupees per month, from the bus
owners, bus workers 2 rupees per day, for example 59.

Opioid availability and consumption

The International Narcotics Control Board has published the following figures for the consumption
of narcotic drugs in India for 2003: pholcodine 176 Kg; dextropropoxyphene 78 931 Kg; pethidine
152 Kg; diphenoxylate 3 771Kg. The following figures are based on 2001 statistics because there
were no figures available for 2003: codeine 15 346 Kg; morphine 196Kg. The average daily
consumption of defined daily doses (for statistical purposes) of morphine per million inhabitants,
19
2001-2003, for India was 160. This compares with other Asian countries as follows: Pakistan 1;
Bangladesh 1; Sri Lanka 11; China 5; Singapore 31; Japan 178 (Table 8).

Table 8 Average daily consumption of defined daily doses (for statistical purposes) of
morphine per million inhabitants, 2001-2003: countries of Asia

Japan

Hong Kong

Republic of Korea

Singapore

Malaysia

Dem. People's Rep. of Korea

Sri Lanka

Thailand

Philippines

China

Bangladesh

INDIA

Bhutan

Pakistan

0 20 40 60 80 100 120 140 160 180 200

Morphine

Source: International Narcotics Control Board Narcotic Drugs: Estimated World Requirements for 2005. Statistics for
2003. New York: United Nations, 2005

It is estimated that less than three per cent of India’s cancer patients have access to adequate pain
relief 61,62 and many states in India have no medical facilities that dispense morphine. In the 16
states/territories with palliative care services we found 14 reported prescribing morphine. However,
there are immense difficulties with morphine availability. The licensing of morphine for medical
purposes is a state function rather than a central government function. Government regulations are
stringent but an individual state/territory can adopt simplified narcotics regulations which make it
easier to purchase, store and utilise morphine. There are ten states/territories which have adopted
these simplified regulations 60,63 (Table 9) but availability remains limited 64-66.

Table 9 States/territories which have adopted the simplified narcotics regulations

State/Territory
Chattisgarh
New Delhi
Haryana*
Karnataka
Kerala
Madhya Pradesh
Orissa

20
 Sikkim*
Tamil Nadu
Tripura*
(* indicates no identified palliative care services in the state/territory):

A sustained initiative to improve the availability and access to opioid analgesics in India is a World
Health Organization project which consists of a partnership between David Joranson from the Pain
& Policy Studies Group/WHO Collaborating Center at the University of Wisconsin Comprehensive
Cancer Center 65, The Pain and Palliative Care Society (Calicut), the Indian Association of
Palliative Care, agencies of the Central Government of India, and several state government
ministries of health. The project was initiated by WHO in 199463 and is supported with a grant
from the United States Cancer Pain Relief Committee. This collaboration has developed guidelines
for obtaining morphine and held workshops on opioid availability with healthcare professionals and
state officials across India (e.g. Kerala, New Delhi, Chattisgarh, Assam) 67.

Dr Bhatia, Rajasthan Hospital, Ahmedabad, Gujarat, north west India describes the impact of this
work:

Getting the hospice care centres started with the help of outside agencies and of course the first
focus of David [Joranson] has been always to get the oral morphine released, oral morphine
will be shortly I think, at least in Gujarat, available across the counter in big cities and once
that experiment works and the drug controller gets confidence that addiction is not a problem
then perhaps we’ll go to more to more towns and then perhaps we’ll go to smaller towns and
get the drug people to dispense the oral morphine across the counter. But the message that
David was conveying to the drug controller is working…The IAPC originally aimed to get the
oral morphine liberalised, that is already I think working but the second aim was the training
centres, the training of the health workers which has yet to be realised 68.

There has been some success in improving access to opioids. In Ahmedabad, Gujarat, (since
September 2004) morphine can be dispensed by a pharmacy directly to patients. The doctor gives
the patient a prescription with their signature and stamp and this can be taken to the pharmacy at a
convenient time. The pharmacy works with Global Cancer Concern (an NGO) and there are plans to
extend this service to south Gujarat in Surat and Rajkot (300 km and 200 km from Ahmedabad City
respectively) which would improve the availability of morphine for patients living beyond the city’s
boundaries 69.

In addition, The Pain and Palliative Care Society (PPCS), Calicut has been designated a WHO
Demonstration Project (WHODP) to provide national expertise and leadership in opioid availability,
especially in the use and control of morphine (The PPCS is also a WHODP for providing cost-
effective community-based home care for late stage cancer patients). In 2004, with the assistance of
the WHO Collaborating Center for Policy and Communications in Cancer Care, Dr Rajagopal
(AMRITA) secured a grant from the United States Cancer Pain Relief Committee to implement a
series of workshop programs which aimed to ensure adoption and implementation of the simplified
narcotic regulations by all states and union territories in India. A second grant was awarded to Dr
Paleri, Calicut, which aims to train health professionals in India so that there is a body of expertise
and training in the proper use of opioids 67.

Despite some success at improving the availability of morphine, progress is slow and many
palliative care services in India have great difficulty obtaining a continuous supply of opioids,
which can be frustrating for palliative care practitioners. Tamil Nadu, South India is one of the
states which has adopted the simplified narcotics regulations but Dr Mallika Tiruvadanan based at
the Lakshami Pain and Palliative Care Clinic, explains how this does not equate to a continuous
supply of morphine:

21
 I don’t have a supply at all. In almost the whole of Tamil Nadu there is just the Regional
Cancer Institute in Chennai which has the WHO stock of oral morphine, and only the
immediate-release tablets, the 10mg and the 60mg. So we have got permission from the
Director to send our patients to them, so we give our prescription, with our seal and signature
and all that, and they can take it to the Institute and get their morphine supply. But, you know,
this is difficult for some patients. There were some dealers, just one or two dealers, a year or
two ago, but they’ve all shut, closed their doors because they have all complained about
constant harassment with going and renewing the licences, obtaining the licence. So they just
don’t want to have anything to do with morphine. Now the morphine is being supplied by one
or two pharmaceutical companies and it is also given away to one or two of the major hospitals.
Now the thing is it’s sometimes available, sometimes it’s not 70.

Dr Stanley Macaden, Bangalore Baptist Hospital, Karnataka, south India describes some of the
problems of morphine availability in India:

All over India the rules have been amended but it has not been adopted by all the States, and
health is a State subject, so there are places where they don’t have the rules amended. And
even if they are amended the implementation has been a problem, so all those things are there.
And also the awareness among the health professionals to prescribe morphine, so the demand
also has to be there from the health professional side, and so that’s why the medical education
and training of doctors and health professionals, nurses, all this becomes important with regard
to palliative care 71.

Barriers to morphine availability in India include:

• Stringent central government legislation

• State government reluctance/ignorance about simplified narcotics regulations
• Difficulties with some state bureaucracy
• Fears about morphine addiction among state officials, health professionals, patients and their
families
• Pharmaceutical companies unwilling to produce morphine
• Products prohibitively expensive
• Few dispensing services
• Lack of experience of prescribing morphine among health professionals
• Fear of patient side effects
• Little training/education about morphine for health professionals and the general public

National and professional organisations

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 journal 73 the IAPC goals are stated as:

a) 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.
b) Emphasis for better quality of life till death in terminal cancer patient rather than prolong the
life with curative treatment.

22
c) 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 training74. 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 200676, 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

23
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 200676. 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.
24
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 equipment85.

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

25
• 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 India 39

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 India 89

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 India 25

UK Forum for Hospice and Palliative Care Worldwide 90

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

State/Union Territory Grant

Assam Guwahati Pain and Palliative Care Society, Postgraduate Diploma in
Palliative Care, 2002
Karnataka Bangalore Baptist Hospital, Clinical Attachment at St Luke's Hospice
26
 & Fair Havens Hospice 2002
Kerala • Association of Calicut Model Initiatives in Palliative Care, Basic
Certificate Course in Palliative Nursing 2002
• Institute of Palliative Medicine, Palliative Care in Campus -
Training programs for student groups in colleges in Northern
Kerala, 2004
• Malappuram Initiative in Palliative Care, Train the Trainer Program
for Community Volunteers 2004
Training in Palliative Nursing 2003
• Neighbourhood Network in Palliative Care, Foundation Course in
the Care of People Living with HIV/AIDS in the Community 2003
• Pain and Palliative Care Society, Diploma in Palliative Medicine
2003
• Palliative Care Society – Manathavadi, Training of Community
Volunteers in Palliative Care 2002
• Palliative Care Society, Palghat, Basic Training in Palliative Care
for the Community Volunteers 2004
• Wynad Initiative in Palliative Care, 'Hands on' training for
community volunteers in palliative home care 2003
Foundation Courses in Palliative Care for Health Care
Professionals
in Government Sector 2004
• 2004 John Baguley UK Forum Annual Prize awarded to Wynad
Initiative in Palliative Care.
Maharashtra Tata Memorial Hospital, Training Programme in Palliative Care 2002
New Delhi • CanSupport Foundation Course in Palliative Care 2004, 2003, 2002
• Christian Medical Association of India, Fellowship in Palliative
Medicine 2003 and Workshop on Developing Palliative Care
Services 2002
Orissa A. H. Regional Cancer Centre, Sukdev Nayak, Postgraduate Diploma
In Palliative Medicine, 2002
Tamil Nadu Christian Medical College, Palliative Medicine Course for MBBS and
Specialist Registrars in Oncology 2003
Post Diploma Program in Palliative Care for Registered Nurses 2004
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 India91. 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 effort91.

27
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 website94. 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

28
 State/territory IAHPC Program
Guwahati • Sponsored Membership

Karnataka • Travelling Fellowships e.g. Three week training for palliative care nurses
in Karunashraya Hospice

Kerala • Sponsored Membership

• Faculty Development Program e.g.Full time salary for palliative care
faculty position
• Travelling Scholarships e.g. One month Palliative Care Training, USA

New Delhi • Travelling Scholarship e.g. Travel and participation in the 8th EAPC
Congress

Orissa • Sponsored Membership

Tamil Nadu • Sponsored Membership

• Travelling Scholarship e.g. Travel and participation in the 7th International
Conference on grief and bereavement in Contemporary Society
Country -wide Clearing House Program

Palliative care coverage

Palliative care coverage is fragmented in India. The vast majority of institutions treating cancer
patients have no palliative care services. There are many states in India which do not have even a
single palliative care facility 95. Most palliative care services in India are concentrated in cities and
urban areas which leaves vast geographical areas without provision. Only the state of Kerala can
claim to have a comprehensive service provision where it is estimated that there is a 60-80%
coverage in the northern districts 96.

Education and training

Palliative care education and training is provided at different levels by numerous organisations that
include: medical colleges; individual hospitals and hospices; NGOs such as Cancer Relief India,
Global Cancer Concern; international organisations such as WHO, the Oxford International
Centre/WHO Collaborating Centre; and overseas universities.

Palliative care training in India began in the early 1990s 97 and it has been a key focus of the Indian
Association of Palliative Care 98. There are palliative care training courses available in India for
physicians, nurses and volunteers (Table 12), and in Pune, Maharastra, central India, ‘Cipla’, a
purpose-built cancer and palliative care training centre has been established with funding from a
pharmaceutical company 35,99 . Despite these developments, training and education facilities are
recognised to be inadequate for the country’s requirements 100. Unfortunately, there is only one
approved training program through an Indian university (at Amrita, Kerala, south India) and there
are only about four medical colleges in the country which have some palliative care undergraduate
training 101. The Indian Medical Council has yet to press for national palliative care training 34 and
there are insufficient qualified specialists within the country to provide training. In a survey of
doctors training during residency, Mohanti et al 102 demonstrated that participants felt their
palliative care training was inadequate and concluded that palliative care training should form an
integral part of training during residency.

Table. 12 Key training centres for palliative care

29
State/territory Institution Course
Karnataka Bangalore Baptist Hospital PG Fellowship in Palliative Medicine

Kerala Institute of Palliative Medicine / PG Fellowship in Palliative Medicine

Christian Medical Association of Basic Certificate in Palliative Medicine
India Community volunteer training

Trivandrum (Chevanga) Regional One month training programme on pain

Cancer Centre
Amrita Institute of Medical Science
and Research Centre, Kochi
relief and palliative care for doctors,
nurses and volunteers
1-year Certificate Course in Palliative
Nursing
2-year Diploma in Pain & Palliative
Medicine
1-year Diploma in Palliative Care Nursing
6 week Certificate Course in Pain and
Palliative Medicine

Maharashtra Tata Memorial Cancer Hospital, PG Fellowship in Palliative Medicine

Mumbai

Cipla Cancer Palliative Care and PG Fellowship in Palliative Medicine

Training Centre, Pune 1 year Elementary Nursing in Palliative
Care
Tamil Nadu Christian Medical College & PG Fellowship in Palliative Medicine
Hospital, Vellore

In India, one of the most prominent palliative care programmes is run jointly by the Institute of
Palliative Medicine (IPM), Calicut and the Christian Medical Association of India (CMAI) 84 . This
is a Post Graduate Fellowship Program in Palliative Medicine for doctors in India which aims 103 :

• To give training to doctors so that they receive the knowledge and professional skills to render
palliative care services

• To give new insights and perspectives and positively influence their outlook towards the practice
of medicine i.e. from being medicine and doctor centric to person centric and being an equal
partner in a team.

It is a programme which has been widely cited by palliative care professionals working across India
as a key component to the development of services. Dr Mallika Tiruvadanan, Lakshami Pain and
Palliative Care Clinic, Chennai, Tamil Nadu, south India 104 talks about the impact of this training:

And then of course I had been hearing about Dr Rajagopal and his work in Calicut and I just
said, ‘Let’s go there,’ I’d never seen my father cry and become weak like that, so he used to
have very bad neuropathic pain. And we went to Calicut - I wanted to learn from Dr Rajagopal
the various pain techniques. And then we stayed for ten days in Calicut and I think those ten
days really changed me: there was a kind of a transformation. I really don’t know where it
began and when it started flowing, because I used to take my father to the clinic, we never used
to ask Rajagopal anything, he just did whatever had to be done for my father, and I used to
observe all these patients in the outpatient clinic. And I used to walk every day through the
medical college to get some, you know, food for my father and mother and things like that. But
I think during the course of those days something changed. I never really voiced it at that time,
but I told Rajagopal that I’m coming for the foundation course in November… But I just kept

30
 my mind open, those ten days I felt like a kindergarten student, you know, because this is
something so new, something that’s never been taught in my medical curriculum. And it was
just amazing how much I liked it [chuckles]. Then I went back and I started practising straight
away, because we have a basic medical knowledge and I kind of knew, and of course I used to
refer to Calicut for any doubts I had, I used to call them, talk to them, any doubts I had. And I
started treating: we did not have morphine at that time but with the best of my knowledge, and
the anaesthesia techniques that I know of, whatever I could do for a patient at a particular time.
That’s how I started my palliative care service. In 2001 I established ... I started giving free
treatments from day one, my services were free, and never charged the patients. And in 2001 I
established a Trust in the name of Lakshami Pain and Palliative Care Clinic, and I’ve been
running that now, and down the line I have also done my six-weeks course in Calicut and that
was also tremendous exposure and tremendous knowledge I gained by that. And then of course
took the Diploma in Palliative Medicine with the University in Australia.

Although palliative care training is not widely available, many organisations provide education
opportunities. Dr Stanely Macaden outlines the Christian Medical Association of India’s (CMAI)
approach:

I am Co-ordinator for CMAI, for its palliative care programme, so we have been conducting
workshops, you know, in different places through the CMAI and that’s how our team and I
have been involved in workshops. Usually, what we have encouraged is to get Mission
Hospitals to send teams of people from their institutions, you know, so doctor, nurse, social
worker, chaplain. So that it will help to result in some positive action after they go back. So, in
each of these workshops we have had about 25/30 participants, and we have been doing this
now for the past three or four years, or more actually, yeah, two or three workshops. 71

Mr Kishore Rao, managing director of Bangalore Hospice Trust, Karnataka, south India describes
how they train health assistants::

We train health assistants: we have two batches a year and the training lasts six months. This is
actual theoretical training plus hands-on training in the wards: this is done and it’s supervised
by one of the doctor on the trust. We have a general practitioner who is a trustee and he
oversees this entire programme of training of the health assistants. So these girls are trained,
we place an advertisement in the newspapers, and we take girls between the ages of 18 and 25.
We don’t insist on any advanced educational qualifications, as long as they have a school final,
or what you would call ‘O’ levels in the UK. As long as we’ve got that we take them. The
other thing we see is that we see that they come from relatively poor families, so we’re
teaching them a trade and helping them to earn a living, so that’s another thing we do. And in
each batch we train 12-14 girls, so in a year we are training about 25 girls in this. Our entire
need for health assistants in our wards is met from this resource, but the rest of them we place
on a home care basis. There are many patients who want to be at home, not only our patients of
cancer, it could be anybody, it could be a geriatric patient lying at home who needs some
round-the-clock help, so we place these girls at such homes and the homes pay them directly 8.

A significant feature of education and training within Indian palliative care is training provided for
volunteers and patients’ families. For example, Dr Bhatia, Rajasthan, Gujurat, north west India
describes how and why they train patients and relatives:

Rajasthan hospital is a charitable private hospital, it is run by a private charity, they don’t have
any government grant, they have their own financial outlay and there’s about 300 beds at the
hospital and it’s situated as you see in the heart of the city...we have oncologists operating,
chemotherapists but we don’t give medicines free except oral morphine, oral morphine is the
only medicine which we can give free and we can admit the patient in a free bed but our
restriction is that we train the relatives for 5, 6 days and let him go. So our idea is to treat the
patient at home by training him on video programs which are run automatically, they are in the
31
 local language so the nurse can run the program repeatedly for them, if they are not very
comfortable with earphones, we have a room in which we run the program loudly with
speakers, they listen to it, they see how to do it and then they go and do it on the patient who is
admitted and the next day come back and tell us what are the problems and we are able to sort
it, so this is a training program for relatives which we run on video 68.

The Neighbourhood Network for Palliative Care in Kerala, south India, has been strikingly
successful in pioneering a palliative care service which is based upon a network of trained
volunteers in the community with a support system of trained professionals. Volunteers are given
structured training providing they are willing to donate at least two hours every week to the
palliative care home care programme. The volunteer training involves 16 hours of interactive theory
and 4 days of practical work as part of an ‘initiation’ 58.

Palliative care workforce capacity

National statistics relating to palliative care workforce capacity in India are unavailable at this time.

HISTORY AND DEVELOPMENT OF PALLIATIVE CARE

The concept of palliative care is relatively new to India, having been introduced only since the mid
1980s. Hospice and palliative care services in India have been developed through the enormous
effort of committed individuals who include Indian health professionals and volunteers, in
collaboration with international organisations and individuals from other countries.

Narrative history of palliative care

This section highlights some of the formative events in the development of hospice and palliative
care in India as well as some of the lived experiences of the people involved.

In the beginning: 1975 to 1990

In 1975, the Government of India initiated a National Cancer Control Programme 105. By 1984, this
plan was modified to make pain relief one of the basic services to be delivered at primary health
care level. Unfortunately this policy was not translated into extensive service provision 34. The
hospice and palliative care movement in India started tentatively in the early 1980s and slowly
increased in the latter part of the decade. Dr Mohan Bhatia describes his experiences of early
palliative care development in India:

In 1973 when I came back from one year’s stay in the UK, there was no concept about
palliative care, a terminal patient was given perhaps aspirin tablets and let go, the concept was
OK this patient isn’t curable, give him radiotherapy or let him go, in ’73 perhaps first we
started thinking that we required something better than the aspirin for these patients so we went
to the real opium, we were giving pure opium dissolved in tea to the patients and that was
working but then the problem was that every time they had to come back and collect their
opium and that was proving to be difficult but that’s the system we ran on for quite a number
of years, until the Indian Society for the Study of Pain was formed in ’84. It started at
Amadabad, Varanasi and Delhi, three places simultaneously and in ’86 we had the first
meetings and then the concept came in of the oral morphine 68.

In 1986, Professor D’Souza opened the first hospice, Shanti Avedna Ashram, in Mumbai,
Maharashtra, central India 106. At a similar time, pain clinics were established at the Regional
Cancer Centre, Trivandrum, Kerala with the assistance of a WHO subsidy 2, and at Kidwai
Memorial Institute of Oncology, Bangalore, Karnataka. Oral morphine was made available, free of

32
charge for the first time 2,86,107. Dr Saraswati Devi recalls the early development of the Kidwai pain
clinic:

When we started we saw many numbers of patients suffering from very, very severe pain, so
our Professor here, started this clinic as a pain relief clinic in 1986 and for two years it was
running just to relieve the pain, we used to give some blocks or some anaesthetic. This is a
regional cancer centre and at that time we were seeing around 7-8,000 in a year, and we used to
get lots of patients with very, very severe pain. So we started the clinic like that, and later on he
went abroad and he worked at the Royal Marsden and got the Royal Marsden formulary, how
to manufacture and dispense morphine. With this I joined him, then we started, we bought
morphine in India in an institution for the first time in our country in 1987, December. Since
1988, January 1st, we started dispensing morphine to the patients. So we used to import crude
morphine sulphate powder from government factory, then get the crude morphine sulphate
powder to dispense here with that Royal Marsden formulary 108.

Jeevodaya Hospice opened in the city of Chennai, in the southern state of Tamil Nadu in 1990. Dr
Manjula Kishnaswamy describes how the hospice was established:

Well basically I am a general surgeon and in the late 80’s I was working in the cancer unit of a
hospital, and more than 90% of the patients that we were getting were in the advanced stage of
cancer and we didn’t have anything special to offer them because they were beyond cure but
then we didn’t have any special medicines or anything to relieve their pain and it was terrible
to see them coming back to us with unrelieved pain and very advanced tumours, fungating
tumours which needed a dressing very frequently and being a hospital with limited resources
we were not actually able to cope with the entire population that came in. We realised that
these people needed a special service, maybe in a special institution where they could be
looked after until the end to relieve them. That was how it started and then we were on the look
out for places where and people help us and it was at that time that we met the Sisters and right
from day one, the project took off, it was in late ‘89, so the hospice got registered in ’90. At
that time there were no others in palliative care, we hadn’t even heard of the word hospice at
that time so this was the first hospice of South India and maybe it’s the second in the whole of
India the first one we realised started in Bombay Shanti Avedna in 1986 50

A key factor in generating awareness of the concept of hospice and palliative care at this time was
the input of palliative care expertise provided by international colleagues, especially through WHO.
Gilly Burn made her first visits to palliative care services in Ahmedabad, Mumbai and Goa. As a
consequence of these visits, she delivered, in collaboration with Dr Bhatia, a six-day course on
palliative care and pain relief with 40 nurses 86,109. This was followed by a three month palliative
care diploma course for doctors and nurses at Gujarat Cancer & Research Institute in Ahmedabad 97.

Further development: 1990- 2005

From the 1990s onwards there was a significant increase in the momentum of development of
hospice and palliative care provision. This was demonstrated through both an expansion in the
number of services as well as other key events and initiatives. The few services established were
able to act as examples of the ways in which care could be offered to people at the end of their lives.
Mr Kishore Rao, the managing director of Bangalore Hospice Trust which was founded in 1994
describes the importance of being able to visit other hospices and how it influenced the
development of his own ideas about hospice and palliative care:

And it was those visits I used to make to the hospital periodically that really opened my eyes to,
not cancer care so much, as what happens after the care, after the curative part is over, and with
illiteracy, you know, with poverty and things being so much in this part of India, it was really
tragic that people were not being counselled properly when the treatment ended; they were not
being taught what to do or told how they can manage the rest of their lives. That’s when I
33
 thought of doing something for palliative care: to me that word was not known at that time, I
didn’t even know what palliative care was, but in my periodical visits on business to Bombay I
started visiting Shanti Avedna Ashram, India’s first hospice, and that really was an inspiration
to me. Throughout the rest of my working career from 1986 onwards I used to visit this
organisation every time I went to Bombay. That’s how in 1992 I thought of taking early
retirement from the job I was doing to devote the rest of my time to this work, to palliative
care8.

An important event in the development of palliative care was the proposal to establish the Indian
Association of Palliative Care (IAPC) in January 1993, during a workshop arranged with the
guidance of WHO and the Government of India 72. Dr Mohan Bhatia recalls the early aims of the
IAPC:

The IAPC was started in Amadabad, I was the first honorary secretary for nearly 3 or 4 years to
get it started. In my own mind the aim of the IAPC was to get people interested in palliative
care. I’m not talking only of nurses, I’m talking of doctors who are interested and primary
health centres, primary health workers whom they call in China barefooted doctors, those types
of people interested in palliative care and I think the message was very clear 68

IAPC held its first international conference at Varanasi in January 1994 (with WHO and
Government of India assistance) and adopted a constitution 72. The following year, the IAPC set up
a Palliative Care Drugs Committee and Educational Task Force 74 and held its Second International
Conference in Ahmedabad, where 180 delegates attended 72. At this time the importance of
international support and expertise to Indian hospice and palliative care is demonstrated by the
IAPC list of overseas & WHO representatives on the Advisory Faculty 110; these included:

Dr Jan Stjernsward (WHO, Switzerland)

Dr Vittorio Ventafrida (Italy)
Dr Robert Twycross (UK)
Ms Gilly Burn (UK)
Mr Helmut Sell (WHO Delhi)
Ms Sally Wimbles (UK)

Dr Sukhdev Nayak, the IAPC Hon. Secretary at that time, states in his 1997-98 report, ‘The help
and co-operation from our friends abroad can’t be emphasised more. The role of Dr. Twycross, Dr
Stjernsward, Dr Joranson and Ms Gillian Burn in several ways to improve palliative care activities
in India has been a great help to our association. The association is extremely thankful to them and
our other friends from abroad’(p.49) 111.

Dr Robert Twycross, who has been involved in providing training to colleagues in India since the
mid 1980s, writes in his report on visiting India in 1994:

Having met on this visit most of those who have come to the UK over the last 5 years, I am
convinced of the value of this form of training for selected potential palliative care leaders.
Given the size of India, I anticipate the need will continue until the end of the century. It is
necessary to establish indigenous enthusiasts not only in all the Regional Cancer Centres but
also in the medical colleges112.

The mid to late 1990s saw a range of developmental activities. The embryonic Pain and Palliative
Care Clinic was established at Medical College Hospital, Calicut, Kerala, south India. Over the next
few years this organisation went on to form the Pain and Palliative Care Society and the
Neighbourhood Network in Palliative Care, a community-based palliative care service which
became a WHO demonstration project. CanSupport was founded by Harmala Gupta in Delhi which
provided the first free palliative care home care support service in north India. In Pune, Maharasthra,
central India, the Cipla Cancer Palliative Care Centre was established. In consultation with Cancer
34
Relief India, it developed a new concept of a ‘living’ palliative care centre 109 which has 50 beds
arranged in a quadrangle with a children’s playground in the middle.

Morphine availability was a considerable problem to the provision of hospice and palliative care at
this time. In 1998, the first collaborative workshops organised by The Pain and Palliative Care
Society and the WHO Collaborating Center for Policy and Communications in Cancer Care were
held in Kerala. This was one of a series of workshops held across India which were a co-ordinated
attempt to persuade state officials of the benefits of adopting the simplified narcotics regulations
and thus improve accessibility of morphine 63. Dr Rajagoapal describes these early efforts:

And David Joranson has I think a very, very pragmatic approach, he would go about talking to
people and keep picking people’s brains. He made so many contacts with the government,
because he recognised that whatever we do with non-government organisations, morphine
availability cannot improve without government’s involvement, because narcotic regulations
were preventing access to opioids. Then our association started and we started working
together with the Indian Association of Palliative Care, which was also founded in ’93, became
a partner to it, but I’m sure David’s role in it was the biggest factor which improved things.
What we did together at that time was he raised the money, he found the money, and wherever
we could identify a champion, in that state, we would try to get the administrators and
palliative care doctors together round the same table with him. We did that first in Kerala; we
could get the government official, senior bureaucrat to support us, so there was this bureaucrat
and then the doctors and drug regulators, and the drug regulators could bring out their fears
about addiction; other doctors could talk about their fears and things could be clarified over the
table, across the table, and the decision was taken then to improve things 89

The Future

The growth and development of palliative care in India over the last twenty years is reflected in an
analysis of journal articles which have been written about palliative care in India. Figure 1
demonstrates the rise in internationally available published articles.

Figure 1. Published journal articles 1989- 2005

70

60

50

40

30

20

10

0
1989-1994 1995-1999 2000-2005

Others Indian Journal of Palliative Care

35
However, Dr Rajagopal 95, writing in 2005, presents a more detailed assessment of palliative care
development in India:

Look back at the development of palliative care in India: from its birth as a hospice in Mumbai
in 1986, to its acceptance as an essential part of National Cancer Control Program in 1991, to
its establishment in many of the regional cancer centres, to its spread as a community oriented
network in Kerala, and to a reversal of the downward trend in opioid consumption in the
country. Some of us palliative care workers tend to pat ourselves on our backs – till we are
taken aback by someone like Dr Jan Stjernswärd who points out that all considered, the
progress is “disappointing”. When the blinders fall from our eyes, we see the disappointing bits.
The policy exists, but only on paper. Oral morphine reaches less than 1% of the needy, even
now. The vast majority of institutions treating cancer patients have no palliative care services.
There are many states in India which even now have not even a single palliative care facility. It
is easy to blame the red tape and the Government, but the fact remains that the medical and
nursing professions at large, have not accepted palliative care as an essential part of health care.

36
Success Stories

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
37
 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:
38
 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
39
 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 Hospital 28

Life/oral histories

Sister Alexia – Administrator, Shanti Avedna Sadan, Delhi: interviewed by Lucy Selman, 11
March 2005. Length of interview: 36 minutes.

Sister Alexia became the Administrator of Shanti Avedna Sadan in Delhi in 2003. She previously
worked at Shanti Avedna Sadan in Mumbai, the first hospice in India, and was there when it opened
in 1986. Here she talks about her experiences of working in hospice care, including the fulfilment it
brings her and the problems and experiences of patients and their families. She discusses some of
the barriers hospice staff face, such as communicating with people from rural areas, relatives
wanting to conceal the prognosis from the patient and lack of awareness about palliative care. She
also mentions some of the other organisations working in cancer care in Delhi with which the
hospice has collaborated. Finally, she talks about the spiritual and psychological concerns of
patients and the future plans of the hospice.

Mr Joseph Anam – Volunteer, Pain and Palliative Care Clinic, Vazhakulam: interviewed by Lucy
Selman, 1 February 2005.

Dr Neeru Anand - Head of Chandigarh Hospice, Chandigarh: interviewed by Michael Wright, 12

February 2004 (with Dr Firuza Patel and Dr Minni Arora).

Dr Anand outlines the tensions among families with sick relatives, but speaks of the
satisfaction seeing such stresses diminish as symptoms are brought under control.
Families are welcome and included in discussions so all feel involved.
Communication with Dr Minni Arora (Head of the home care service) ensures that
when patients are admitted, their needs are known and everything is prepared for
them.

Sister Ancy – Sister in Charge, Shanti Avedna Sadan, Mumbai: interviewed by Lucy Selman, 5
April 2005. Length of interview: 15 minutes

Sister Ancy is the Sister in Charge at Shanti Avedna Sadan in Mumbai. Here she talks about how
she started working at the hospice, and the difference between working here and at a hospital, both
in terms of the kind of care provided and the rewards for her on a personal level. She discusses the
questions and concerns that patients have and the sisters’ role in helping them find positivity and
transformation at the end of their lives.

Dr Minni Arora - Head of Home Care Service, Chandigarh Hospice, Chandigarh: interviewed by
Michael Wright, 12 February 2004 (interviewed with Dr Firuza Patel and Dr Neeru Anand).

Dr Arora speaks about the home care service and the seamless transition from the
radiotherapy clinic (where she also works) to the home care service (which she
manages). This continuity with known staff is highly valued by patients. The service
extends to a radius of 25 kilometres and has grown from 6 per month to 25 per
month.

40
Sister Alfia – Nadavayal Neighbourhood Network in Palliative Care(NNPC), Wynad: interviewed
by Lucy Selman, 15 January 2005. Length of interview: 6 minutes.

Sister Alfia is a nurse at Nadavayal NNPC group, Wynad District, Kerala, and trained at IPM in
Calicut. Here she talks about the group’s plan to open an inpatient unit at the local hospital, St
Ann’s. The interview was conducted after a meeting to discuss the plans which was attended by Dr
Shamsudeen, the NNPC co-ordinator for Wynad, Sr. Provincial (Mother Superior at St Ann’s), 3
other sisters and a doctor. Sr Alfia also discusses the paraplegic patients’ workshop to be held that
day at the hospital in conjunction with palliative care day (15th January).

Mr T.S. Babu – Volunteer, Kalpeta Neighbourhood Network in Palliative Care, Wynad:

interviewed by Lucy Selman, 2005. Length of interview 7 minutes.

Mr Babu is a coffee planter in Wynad and a volunteer for the Kalpeta NNPC group. Here he talks
about how he came to be involved in palliative care and the work of the volunteers. He also
discusses the group’s plans for a clinic in Kalpeta and gives some background to the area.

Dr Mohan T Bhatia - Head of Pain Clinic and Palliative Care, Rajasthan, Ahmedabad :
interviewed by Lucy Selman, 2 April 2005. Length of interview: 49 minutes.

Dr Bhatia has been working in palliative care in India since 1973 and was a founding member of the
Indian Association of Palliative Care. Here he talks about the initial concept behind the Vasna
hospice in Ahmedabad (Gujarat), which was to train doctors, nurses and primary healthcare workers
in order to spread the palliative care message in rural areas. Problems with funding mean that the
centre is now used as a training centre for family members and an anti-cancer exhibition.
Bhatia expresses the view that the ideal system of palliative care in India would be trained primary
healthcare workers, based in the villages, with local access to morphine. As it is, carers and
neighbours of patients have to come into the city to pick up medicines. He goes on to discuss how
the population of the region and problems such as a low literacy rate, poverty and different
healthcare priorities prevents a model like that being run in Kerala from working in the area.
He talks about changes in the palliative care scene that have occurred over his career and what he
believes is holding back the development of palliative care in the northern states. Outlining crucial
events in the history of Indian palliative care he points to the following as important milestones: the
formation of the Indian Society for the Study of Pain in 1984; the use of morphine and radiotherapy
in palliation; the building of the Vasna centre in Ahmedabad; the provision of free morphine by the
government to all regional cancer centres; the formation of the IAPC in 1994, and the change in
government morphine legislation brought about with the help of Jan Stjernswald.
He also discusses the use of opium as a recreational drug and how this relates to its medicinal use in
treating cancer pain, and the services provided at the Rajasthan hospital where he works. Finally, he
talks about what would help establish palliative care more firmly in the north, pointing to
government bureaucracy as a hindering factor in training healthcare workers, and funding by
external agencies as a possible solution to the problem.

Dr Sushma Bhatnagan - Rotary Cancer Hospital Pain Clinic, All India Institute of Medical
Sciences: interviewed by Lucy Selman, 9 March 2005. Length of interview: 22 minutes.

Dr Bhatnagar is an anaesthesiologist at the Institute Rotary Cancer Hospital (IRCH) at the All India
Institute of Medical Sciences (AIIMS) in Delhi, one of the biggest government teaching hospitals in
India. The cancer centre has 200 beds and the whole hospital 1500 beds, with free treatment offered
to the poorest patients while more wealthy ones are charged accordingly e.g. for private wards. Here
she talks about the pain clinic started eight years ago at the IRCH, which is focussed on symptom
management and pain control, but also offers homecare by working in conjunction with
CanSupport . Although staff shortages are a problem, and Dr Bhatnagan has requested more nurses
and a psychologist for the team, the team currently also tries to offer psychological support and
41
includes a physiotherapist. They see 20-25 new patients at every clinic (held twice a week) and a
total of 40-60 patients from all over north India per clinic. Head and neck, cervical, breast and lung
cancer are most common, and 90% of patients are at the palliative stage. The team conducts training
and awareness-raising sessions on palliative care and prescribing morphine at the cancer centre. Dr
Bhatnagan has also requested to the director of AIIMS that 15 hours of palliative care training be
included on the undergraduate syllabus. She explains that morphine is provided to patients at no
charge although the hospital has been buying it since free WHO stocks ran out in 2004. The most
common worries of patients are discussed, such as family concerns and financial worries for
patients whose resources have been drained by paying for cancer treatment. Dr Bhatnagan states her
future plans are to extend the clinic times to daily and start a palliative care in-bed facility. Staff and
space are identified as the main barriers to extending the service, and the foundation courses
conducted yearly with CanSupport are seen as an important educational tool.

Dr Anju Bhattacharya – General Practitioner: interviewed by Lucy Selman, 6 April 2005.

Length of interview: 31 minutes.

Here Dr Bhattacharya, a G.P. in Mumbai, talks about how she has became involved in palliative
care through working at the Shanti Avedna Sadan in Mumbai and doing a course in palliative care
in Lyon, France with Marilyn Filbert. She mentions the strength of the family unit in India as
beneficial to palliative care in India, although lack of awareness amongst medical staff is a
hindrance. She currently sees a few patients through her private clinic in north Mumbai, and talks
about how lack of time and money restricts the work she can do. She talks about morphine
availability in Mumbai and the need for more palliative care services, with her dream being to set
up a hospice in north Mumbai and in Assam, where she is from. She also talks about awareness-
raising through Assam House in Mumbai and what she needs in order to expand her palliative care
work at the clinic, especially guidance from other practitioners in the field. Finally, she discusses
patients which have inspired her in her work

Gilly Burn – Nurse and founder, Cancer Relief India: interviewed by Michael Wright, 13 February
2005. Length of interview: 50 minutes

Dolly Roy Choudhury -Volunteer with the Guwahati Pain and Palliative Care Society, Assam:
interviewed by Rosemary Mingins, 13 Feb 2005. Length of interview: 10 minutes.

Dolly Roy Choudhury was an only child and her father died when she was about thirteen. She
struggled through her secondary and then further education in spite of the grief and financial
worries. She took her MA in political science and then taught at the Guwahati University High
School. Then her mother arranged for her to get married and after two months her husband was
diagnosed with cancer and died within ten months. With great difficulty she continued to work but
then her mother was diagnosed with cancer and died in February 2004. Following the words of
Vivikananda she believes that through her suffering she can serve God. She was encouraged to join
the Pain and Palliative Care Society at Guwahati as a volunteer after her mother’s death.

Professor Saraswathi Devi - Professor of Anaesthesiology and Head of Palliative Care, Kidwai
Memorial Institute of Oncology, Bangalore: interviewed by Lucy Selman, 5 January 2005. Length
of interview 1 hour 12 minutes. Also interviewed by Michael Wright, 14 February 2004. Length of
interview 43 minutes.

Saraswathi Devi describes her work at the Kidwai Memorial Institute of

Oncology where up to 2,200-2500 new cases and 4000 follow-up cases are seen
in the palliative care department each year. Morphine is available. Although
research does not feature prominently, there is a wide range of educational
courses. Saraswathi Devi tells of the ways in which palliative care embraces a
more comprehensive approach than traditional medicine and how at first she
found it uncomfortable being in the company of other professionals when
42
dealing with patients. She also tells how every Indian parent wishes for their child to become a
doctor and join a respected and lucrative profession. Palliative care, therefore, is confronting
ingrained medical attitudes which resist any form of non-lucrative referrals or multidisciplinary
work. She then speaks of the difficulties brought about by the deep-seated corruption that reaches
all levels of Indian Society, and which also encompasses health care organisations and institutions.
As the daughter of a British serviceman, she was raised with a sense of duty and insists on a no-
corruption policy within her service. She goes on to speak of her role as president of the IAPC and
of national issues such as the unavailability of morphine, the lack of palliative care training in
medical curricula, the growth and development of the National Association and her vision for the
future. It is time, she says, for people to find an inner strength in India, to stand up and change
things for the better. In addition to confronting the unavailability of morphine, the biggest single
step forward would be to introduce palliative care into medical curricula.

In her second interview, Dr. Saraswati Devi talks about the history of the Pain Relief Clinic,
running since 1988, morphine distribution and the Palliative Care Department, open since 1994. She
also raises her experiences as someone trained in anaesthesia moving into palliative care, including
personal lessons regarding false assurances and truth-telling in palliative care. The role of
volunteers is mentioned, and how a secular institution such as Kidwai handles spirituality and
religion. As an ex-president of the IAPC, Devi discusses the history and role of the IAPC, the
problem of palliative care not yet being a speciality in its own right, and the need to include
palliative care in the medical curriculum. She talks about some of the ethical dilemmas they face as
a department, such as when to stop active treatment, requests for euthanasia, disclosure of diagnosis
to patients whose families do not want them to know, and the religious as well as practical issues
involved when a patient dies at home or in the hospital. She discusses the institution’s needs and the
future of palliative care in India, emphasising the need to train nurses and what they can learn from
trips to the West. Finally, she talks about problems with trying to implement the NNPC ‘model’ in a
metropolis such as Bangalore, and the importance of emphasising both palliative medicine and
palliative care equally.

Dr Reena George – Head of the Palliative Care Unit, Christian Medical College &
Hospital,Vellore: interviewed by David Clark, 26 November 2004.

Dr George describes in this interview the development of the palliative care services in Vellore
which are based in the Christian Medical College and Hospital. She believes that the service, which
is located in the teaching hospital and nursing college, has made reasonable progress with education
and clinical developments but has not managed, so far, to incorporate the community. The service
started with a weekly clinic with two doctors and then the Rev John Lunn joined as a volunteer,
which helped to guide the palliative care programme. Dr George then talks about the struggles to
establish the service which include making oral morphine available, funding and providing training
for staff. There are now twice weekly clinics and home care visits once a week. She talks about the
importance of the oncology trainees, which provide the backbone of the medical care, both in terms
of service provision and student training in palliative care. Some of the registrars who have worked
in the clinic have gone on to set up palliative care clinics in other parts of the country. In one case,
Dr George explains that a registrar refused a consultant post in oncology but chose instead a
consultant post in palliative care. Nursing staff are also becoming interested in palliative care with a
small number choosing to focus on palliative care for their MSc dissertations. Dr George speaks
with relief that the hospital administration now provide long term funding for a chaplain, social
worker, nurse and doctor for the service. She also talks about the importance of spiritual care to the
service and feels fortunate that it has remained central to palliative care when there are so many
demands on busy clinics. Future plans for the service include the development of a hospice and
training centre in collaboration with a Catholic organisation . Dr George concludes the interview by
speaking about her role as editor of the Indian Journal of Palliative Care.

43
Dr Dinesh Goswami – Secretary, Guwahti Pain and Palliative Care Society; medical director –
Durga Nath Hemo Prova Hazarika Memorial Palliative Care Clinic: interviewed by Michael
Wright (with Dr Kabindra Bhagabati), 14 February 2005. Length of interview: 48 minutes

Dr Goswami describes how his contact with cancer patients and background
as an anaesthesiologist drew him towards palliative care in 1991. After being
trained in Calicut (1998), he was instrumental in forming the Guwahati Pain
and Palliative Care Society (1999); this was closely followed by the first
palliative care service in the north eastern states of India. Once the clinic was
established, the Kerala community model was adapted for use in Guwahati
and a home care service began (2001), supported by local volunteers. Assam
is known for its broad mix of cultures and religions. Consequently, dialogue
has begun with religious leaders to facilitate their support. Among numerous
challenges, one of the most pressing is communication with the patient: most
of them arrive at the clinic with no knowledge of their diagnosis. Unlike in
other Indian states, the procurement of morphine is generally unproblematic and the drug has been
available for about a decade. Dinesh Goswami tells how the clinic has increased its staff, how
training has been made available to health workers locally and in Kerala, and how funding has been
forthcoming from the Wilfred Bruce Davis Trust, a UK charity. Successes include a growing
community involvement and the donation of a house to advance the needs of the service. Future
plans include the setting up of local centres throughout Assam and the training of volunteers in
other cities.

Dr Sawita Goswami – Clinical Psychologist, Tata Memorial Hospital, Mumbai: interviewed by

Lucy Selman, 4 April 2005. Length of interview: 11 minutes.

Dr Goswami has been a clinical psychologist with the palliative care team at Tata Memorial
Hospital, led by Dr Muckaden, for seven years. Here she talks about how she became interested in
palliative care, visiting Cardiff University for palliative care exposure and now looking to do the
diploma course there. She discusses what attracts her to working in the field, on a personal level,
and the differences from counselling other patient groups. Particular difficulties she encounters in
her work are the collusion of patients’ families and denial. Depression affecting quality of life,
anxiety, suicidal ideation and feelings of worthlessness are common amongst patients. She deals
with such problems by encouraging positive, open communication, giving options, truth-telling,
listening and coming up with ways to keep patients occupied in order to lift their mood. She talks of
one particular case which inspires her – an 18-year-old girl who was helped tremendously by being
allowed to voice the anxiety she hid from her family, who were not disclosing her diagnosis, and
discussing the future openly with Dr Goswami.

Ms Hamarla Gupta – Founder, CanSupport, Delhi: interviewed by Liz McDermott, 11 November

2004.

In this interview Hamarla Gupta speaks about how she became involved in palliative care through
her own personal journey which started in 1986 when she was diagnosed with Hodgkinsons
Lymphoema. The differences between the way cancer was treated and spoken about in Canada was
in stark contrast to her experiences of stigma when she returned to India. In response to these
personal experiences, Hamarla Gupta started to develop cancer patient support services. She
describes the struggles at first to raise funds from family and friends and the resistance she met
from some of the medical establishment. For six years, she provided cancer patient support services
in two cancer hospitals. Then a pain and palliative care clinic at the All India Institute of Medical
Sciences was established and she was able to collaborate with an anaesthetist who recognised the
importance of emotional support to patients with advanced cancer. During this time she began to
work with Ruth Woolridge and they developed a homecare programme for patients with advanced
cancer. She talks about the battles to overcome problems with morphine availability, medical
training and the huge numbers of people who need care. The homecare programme currently has
44
expanded to four teams with doctors, nurses and counsellors that operate out of different centres in
Delhi. She speaks of the ways in which the homecare services ‘stretches the boundaries’ of
palliative care by, for example, providing basic dry foods, transportation assistance or medical aids.
In the future, Hamarla Gupta believes the services CanSupport provide should be available at a
national level through the already existing public health system.

Dr Rakesh Gupta - Santokba Durlabhji Memorial Hospital and Medical Research Institute,
Rajasthan: interviewed by Lucy Selman, 14 March 2005.

Dr Gupta, who currently works as a surgical oncologist at the private Santokbha Dulabhji Memorial
Hospital in Jaipur, Rajsthan, has had an interest in palliative care since meeting a WHO
representative sponsored by Macmillan in the early 90s. In 1993 he spent ten weeks training in
palliative care through the Macmillan Relief fund at the Oxford International School of Palliative
Care and centres in Sheffield, Chelmsford and London. After this he continued to work at the
medical school in Udaipur, Rajasthan, taking voluntary retirement as social professor in surgery in
2000, since when he has been working in the private sector. He was an American Cancer Society
university scholar in 2002. Although he would have liked to work solely in palliative care he has
had to continue to work as a surgical oncologist for financial reasons, but continues to work as a
palliative care activist through the NGO he founded in 2004/5, the Rajasthan Cancer Society. The
Society was founded to reach out to cancer patients who don’t ever reach state cancer centres
(estimated to be 50% of patients). Here he talks about political problems and frustrations facing
those working in palliative care in Rajasthan, such as lack of resources, especially state funding and
support and trained staff. He speaks of the work of his NGO, which works closely with district
administration, media, other NGOs and healthcare workers to educate and raise awareness. He
recommends that funds are tracked more closely to prevent palliative care funds being misspent on
costly cancer treatment equipment. With respect to the future, Dr Gupta advocates working with
medical colleges, district hospitals and primary and secondary health care in the community. The
data from the National Cancer Registry in Bangalore estimates that there are 25-30,000 new cancer
cases in Rajasthan per year, of which 70% will be advanced cases, which makes palliation a number
one priority. Nationally, he sees the incorporation of palliative care into the medical and nursing
schools’ curriculum to be a major goal, and argues for an evaluation of how states’ palliative care-
directed funds are spent. Finally he discusses particular issues of importance in Rajasthan, which
has a poor socio-economic population, difficult to access tribal areas, a high rate of illiteracy, a
health-service focus on communicable diseases and a growing AIDs problem.

Mrs Savita Jadhar – Medical Social Worker, Tata Memorial Hospital, Mumbai: interviewed by
Lucy Selman, 4 April 2005. Length of interview: 15 minutes (with Savita Goswami)

Savita Jadhar is the medical social worker with the palliative care team at Tata Memorial Hospital,
Mumbai, led by Dr Mary Muckaden.. Here Mrs Jadhar talks about becoming involved with the
palliative care team when the paediatric side of their work started in 2002, after working with the
rehabilitation of adults at Tata since 1992. Her main tasks are counselling, identifying needs and
resources, assessment, evaluation mediation and advocacy for patients. She sees 3-4 patients a week
through the palliative care paediatric OPD, which runs twice a week. With young children the
parents’ concerns are the primary issue, especially worries about prognosis, pain and symptom
management and what to expect in the future. Many patients live outside Mumbai and she sees
them only once; if they are local there is more team involvement. For older children disclosure and
family communication are major issues. Mrs Jadhar talks about her reservations before joining the
team and the difficulties of working with children. In the mid-80s when training there was no
palliative care element in medical social work, although they now have social work students who
come for placements with the team. Savita Goswami agreed that palliative care issues were also
lacking in her clinical psychology training. Mrs Jadhar finishes by recounting the story of a patient
who particularly inspires her, a labourer who died ten years ago but whose wife is still in touch with
her for advice and support.

45
Sister Jyothi – Nursing sister at Holy Cross Hospice, Perumpadappu, Ernakulam District, Kerala:
interviewed by Rosemary Mingins 13 Feb 2005. Length of interview 8 minutes.

At the age of nineteen Sister Jyothi entered the convent. There she trained as a nurse and this was
followed by three years training to be a religious sister. She was a sister in a hospital for several
years before doing her community health work studies. She then specialized in community health
nursing and worked as a social worker in Mavelikara for nine years. There were fifteen different
centres there, each helping 150-200 people.There was a Self-Help Group and Sister Jyothi worked
with the women there. A year ago she was asked to work for the first time with the terminally ill at
the Red Cross Hospice where she is very happy to be working now.

Dr Anjum Kahn - Pain Clinic, Bhagwan Mahaveer Cancer Hospital and Research Centre,
Rajasthan: interviewed by Lucy Selman, 14 March 2005.

Dr Kahn works as an anaesthesiologist at the Bhagavan Mahaveer Cancer Hospital, a 120-bed

specialist trust hospital in Jaipur, Rajasthan. Here she talks about how her MD in anaesthesia led to
an interest in pain management, especially where it is ignored by other specialties, such as when
patients are past the curable stage. Palliative care does not have its own department and Dr Kahn
along with one other doctor are the only staff with an interest in palliative care, although neither
have formal training. A quarter of the hospital’s care is provided free of charge, but almost all
palliative care is free, as families are reluctant to spend any remaining funds on patient treatment
when no cure is being offered. The hospital is one of two or three cancer centres in Rajasthan and
was the first with available morphine; however, procurement is difficult owing to the bureaucracy
of applying for a regular licence and transit permits. Dr Kahn goes on to talk about the conference
day on pain management and palliative care planned for 8 April 2005, co-organised with the
American Medical Association with the aim of educating physicians on end-of-life care. A
Rajasthan-born physician currently working in New York was to lead the event, replicated at 4
centres in India, and doctors were invited from radiotherapy, oncology and anaesthesiology
departments and all medical colleges in the state. There is resistance, however, to palliative care: it
is conceived to be a depressing area to work in and there is no monetary gain. She mentions the
growing but neglected problem of AIDS, and talks about her own patients, whose psychological
problems, she says, are overshadowed by their pain. Patients travel to the hospital every month for a
renewed morphine prescription, or go to see a local government health official who faxes the
hospital confirming the patient is still alive. In the future the department would like to expand its
OPD and be able to offer better wound care. Dr Kahn would like to take a qualification in palliative
care. Finally, Dr Kahn talks about the lack of awareness of palliative care in Rajasthan, and the fact
that people do not consider it important to care for those who are terminally ill.

Sister Aleya Kattakayam - Ghandi Hospital and Secunderabad and St Ignatius Health Centre
(Hospice) Andhra Pradesh State: interviewed by Michael Wright, 2004. Length of interview 22
minutes.

Sr Aleya was born in Kerala, one of 10 children, of which she and another sister
are nuns. She entered the world of health care and for many years worked as a
hospital administrator. In January 2000 Sr Aleya was diagnosed with advanced
breast cancer. She speaks of the pain of that diagnosis; of her lack of preparation;
of the impact on her family; and of her uncertainty. As she left home to undergo
surgery, she was supported by both fellow Catholics and those from other
religions as they prayed for her and accompanied her. She recalls her treatment,
the side effects of chemotherapy and the impact of her hair loss. As she regained
strength, she determined to work within palliative care and support others facing similar trauma. St
Ignatius Health Centre (Hospice) was originally a dispensary which now incorporates a 10 bedded
hospice open to patients with a range of conditions. Most are abandoned by their family. Sr Aleya
speaks of her role as a caregiver as patients prepare for death; of the questions that are asked; and

46
the needs that are experienced. Turning to the future, she outlines plans to raise funds and to open a
drop-in centre at the hospice.

Dr Cherian Koshy – Medical Director, Trivandrum Regional Cancer Centr: interviewed by Lucy
Selman, 12 November 2004. Length of interview 34 minutes.

Dr Koshy is the Head of the Palliative Care Deptartment at the

Regional Cancer Centre in Trivandrum, Kerala. Here he talks
about the inception of the department in 1984, when it was a small
clinic dispensing oral morphine, and how it has developed since
then. He talks about the 2 voluntary organisations which support
the department, raising money for a patients’ welfare fund and
providing psycho-social support. He also discusses the training
programmes for nurse they run and plans for an accredited training
course. Finally, he outlines the functioning of the centre, its
current needs, past successes and problems faced.

Dr Manjula Krishnaswamy – Honorary Medical Director, Jeevodaya Hospice, Chennai:

interviewed by Lucy Selman, 24 January 2005. Length of interview 33 minutes.

Dr Krishnaswamy is the Honorary Medical Director at Jeevodaya Hospice just out side Chennai.
Here she talks about the opening of the hospice homecare and education service in 1990 and the
hospice inpatient facility in 1995. She discusses the training programmes they run for nurses and the
foundation courses in palliative care for medical staff. As someone involved in increasing access to
morphine in Chennai she provides some background to the process, as well as talking about the
successes and problems encountered by the hospice. She also discusses the spiritual support offered
to patients, their treatment and personal problems which arise. She outlines their plan to open a day
care and outpatient service, and to increase awareness of palliative care through the work of the
Tamil Nadu Association of Palliative Care.

Dr Suresh Kumar – Director of Institute of Palliative Medicine, Medical College, Kerala:

interviewed by Lucy Selman, 14 January 2005. Length of interview 45 minutes. Also interviewed
by Michael Wright, 15 February 2004, length of interview 1 hour, and, by David Clark 23 January
2003.

Dr Kumar describes his background as one of five boys in a lower middle class
family where his parents were both primary school teachers. He speaks of his ideals
as a young medical student and tells how many students lose their idealism and
social commitment as they become conforming members of the medical profession.
Some students become involved in social activities, politics or trade union activities
during their training and manage to hold on to their earlier beliefs. Interested in the
social aspects of medicine, Suresh spent time in a mission hospital and then
considered a Sociology Fellowship in Delhi but declined due to the funding being below
subsistence level. He eventually became interested in anaesthesiology and pain relief, and
established a working relationship with Dr Rajagopal. Suresh then tells how his interest spread to
palliative care and how he trained at Cardiff after being offered a post by David Frampton at
Chelmsford to help raise the necessary funds. He goes on to outline how the Pain and Palliative
Care Society was founded (1993); how a palliative care clinic was established in the medical
college hospital; how the NNPC was founded in 2001; and how its successes outstripped all
expectations. The service became a WHO Demonstration Centre (2001) and many people have been
trained in Kerala. Suresh believes this community model can be integrated into other resource poor
regions of the world. He closes by outlining the psychosocial and spiritual elements of the service
and suggests there may be issues to address before the spiritual dimension is fully articulated.

47
In his second interview, Dr Kumar discusses the changes in palliative care in northern Kerala. He
explains how palliative care has moved out of the institution and into the community via the NNPC
network, with coverage of 60-80% reached in northern Kerala (1% of the total population of India
is covered by the NNPC network). The NNPC groups now offer a mixture of long-term care for
chronically ill patients and palliative care for those with incurable diseases, representing a public
health approach to palliative and long-term care. Close collaboration with social organisations and
the government is underway, with the NNPC offering advice and expertise in the development of a
community-based support system for government hospitals in Nilambur, Malappuram district. For
Dr Kumar, the NNPC is fundamentally ‘a popular movement to support and develop better care for
all those who cannot afford it.’ He goes on to discuss quality of care in the NNPC model, pointing
out that as the number of patients rises, so too does the number of community participants. The
NNPC approach, he says, offers the patient the maximum possible in terms of social and
psychosocial support. He argues against the traditional view that a team of professionals is required
in palliative care: a multidisciplinary team can instead be a group of local people with skills,
experience and expertise, and the ability to identify when they require additional support, with the
professional expert playing the role of facilitator and trainer. A future focus will be to develop
further these roles of lay person and professional. Dr. Kumar also discusses specific recent
problems they have encountered, particularly tensions resulting from the displacement of the
professional from the centre to the periphery in the community model. He gives an overview of the
workshop on community participation in Manjeri in December 2004, held with the idea of using
palliative care as an entry point to discuss broader development issues and the socio-political
context of community healthcare. The workshop raised many issues regarding the concept of
community participation and the most appropriate model of palliative care in resource-poor settings.
Finally, he talks about the NNPC’s future plans in advocacy, facilitation, documentation and
research into the social impact of the NNPC movement.

Dr Kalwar Ashtok Kumar - Cancer Pain Clinic, Acharya Tulsi Regional Cancer Treatment and
Research Institute: interviewed by Lucy Selman, 18 March 2005. Length of interview: 34 minutes.

Dr Kumar is the only doctor with any palliative care training at the Acharya Tulsi Regional Cancer
Centre and Research Institute in Bikaner, Rajasthan. [The hospital director was also present at the
interview and makes comments towards the end.] The hospital has been a government cancer centre
since 1999 and they see 6000 new patients and 40,000 follow-up patients a year. In 2001, Dr Kumar
did the six-week foundation course in palliative medicine at IPM in Calicut (Khozikode), since then
they have been running a palliative care OPD and have had access to morphine from WHO. In
2000-2001, WHO conducted a research project looking at pain assessment in different forms of
cancer at the centre. Dr Kumar sees 7-9 patients and also prescribes 10-12 patients with morphine
every day, six days a week. Dr Kumar talks about how the service is run, with inpatient support
from a missionary hospice for the poor run by nuns, with medical back-up from the hospital. There
are 2-3 patients at this hospice at any time are palliative care patients, and patients are admitted
when their families find it hard to care for them, though most families want patients to die at home.
They also visit rural health centres on a monthly basis in order to prescribe morphine and teach
wound care. The centre’s focus is on pain relief, with some psychological/ social support provided
by informally trained, retired volunteers, who come in on a weekly basis. The most common forms
of cancer are head and neck (25% of all patients), and breast and cervical (50% of female patients).
As it is a regional cancer centre the government finances instruments and medical staff but not
infrastructure or drugs, which NGOs help with. Dr Kumar and the centre’s director report the main
difficulties faced as being lack of staff, time and financial support. Future plans include a separate
ward for palliative care patients.

48
Sister Leonarda Lakra - Public Health Nurse CanSupport Home Care Team
New Delh: interviewed by Rosemary Mingins 13th February 2005. Length of interview 8 minutes.

Sister Leonarda Lakra joined the Ursuline Congregation of Tildonk after leaving
school and on completing her novitiate she first did her nurse training and then she
became a public health nurse in Kolkata. On completion of her post-graduate
nursing there she was assigned to the health teaching staff of the Diocese and
subsequently became a public health tutor at nursing school where she taught for ten
years. After this she was transferred to Delhi and worked in the resettlement
colonies within the Archdiocese of Delhi. It was after working there for two years that Hamarla
Gupta contacted her and asked her if she would join their palliative care home care team
Cansupport and she has worked with them since 1998.

Dr K S Lal – Medical Director, Pain and Palliative Care Society Clinic, Vazhakulam: interviewed
by Lucy Selman, 1 February 2005.

Dr Ronald Lalthanmawia – Programme Director, Christian Medical Association of India:

interviewed by Lucy Selman, 11 March 2005 (with Dr Joe Varghese).

Dr Moira Leng - :interviewed by Michael Wright, 11 February 2005. Length of interview: 33

minutes

Dr Stanley Macaden - Head of Palliative Care, Bangalore Baptist Hospital, Bangalore:

interviewed by Lucy Selman, 4 January 2005. Length of interview 31 minutes. Also interviewed
by Michael Wright, 2004 Length of interview 17 minutes.

Dr Macadan speaks first of his background: how he comes from a Christian family
of doctors (his father worked in a mission hospital for nearly 33 years) and how he
followed this tradition and studied Medicine at the Christian Medical College,
Vellore. He undertook further training in the UK before returning to India in 1978
to take up a position in Bangalore Baptist Hospital – a 160 bed acute general
hospital - where he has been ever since. Prompted by a desire to provide holistic
care, the palliative care support team was introduced to the hospital in 1995, the
outcome of a retreat. Encouragement came from a variety of sources including the Christian
Medical Association of India (CMAI), Gilly Burn and Robert Twycross. Home care began in 1998.
The palliative care team is made up of 2 doctors, 2 nurses, and a chaplain/ social worker. Referrals
usually come from colleagues within the hospital or the city, or by patient self-referral. After
accepting mostly cancer patients, the team now cares for patients with a wide range of conditions,
including HIV/AIDS: the latter a stigmatized group which requires a lot of support. Stanley tells of
his role within CMAI and his input into education and training for teams of staff from mission
hospitals. Around 350 mission hospitals form the CMAI (protestant) network, an organization
which also includes the medical schools of Velore, Ludhiana and Miraj. Finally, Stanley speaks of
the place of spirituality in India and its meaning for both patients and members of the palliative care
team.

Alice Mathew – Volunteer, Neighbourhood Network in Palliative Care (NNPC), Nadavayal,

Wynad : interviewed by Lucy Selman 2005. Length of interview: 20 minutes

Alice Mathew is a volunteer with the NNPC group in Nadavayal, Wynad, and talks here about how
she became involved in palliative care and in setting up the NNPC group. Her mother has cancer
and she speaks about taking her to Trivandrum Regional Cancer Centre for treatment. She also talks
about why home visits are needed, e.g. ignorance of family members about cancer may lead to
neglect. Finally she talks about fundraising for the NNPC group and the pressures of time on a
volunteer and housewife.

49
Shajan Mathew – Volunteer, NNPC, Nadavayal, Wynad: interviewed by Lucy Selman, 2005.
Length of interview: 10 minutes.

Shajan Mathew is a volunteer with the NNPC group in Nadavayal, Wynad and a lecturer in physical
education at a local college, St Mary’s College in Sulthan Bathery. Here he talks about the
community in which he works and how volunteering has affected his life.

Mr T Monanasundaram - :interviewed by Michael Wright, 12 February 2005. Length of

interview: 27 minutes

Dr Mary Ann Muckadan – Medical Director, Tate Memorial Cancer Hospital, Mumbai:
interviewed by Lucy Selman, 4 April 2005. Length of interview: 32 minutes.

Here Dr Mary-Ann Muckadan, Professor of Radiation Oncology and Officer in Charge of Palliative
Care at Tata Memorial Hospital in Mumbai, talks about her work. She describes her background of
21 years working at the hospital, and setting up the service in 1996. They offer multi-disciplinary
care for inpatients and outpatients as well as home care 6 days a week (running since 1998). Since
1999 they have also been running an annual education programme (1 month course from doctors
and nurses; 10/7 days for medical staff, social workers and volunteers). The aim is for there to be
one trained person in each district of Maharashtra. On the team there is Dr Muckadan (working
70% in palliative care), 2 full-time doctors, 1 full-time nurse, 1 part-time nurse specialising in
paediatrics, 2 full-time homecare nurses, social workers, occupational therapists and nutritionists
through the ‘Stoma’ organisation, and 20-25 volunteers. Volunteers work in the hospital and also
make home visits, providing emotional support and help with communication, particularly
important as in India may people are intimidated by doctors. Home care is nurse-led; a nurse attends
with a social worker, bringing a doctor if necessary, and two teams alternate. Dr Muckadan talks
about the problems faced by patients, most of whom want to stay at home but who are transferred to
a hospice if there is no carer or a difficult home environment. The hospital has about 15, 000 visits a
year and 2000 new patients. Morphine is available and cheap but Dr Muckadan discusses the
difficulty of obtaining it outside of Mumbai and the ‘myth’ of morphine abuse. At the hospital they
have 3 categories of patient: private (40%), general charging and general non-charging (60% in
total). Patients are assessed by the medical social work department. Dr Muckandan talks about how
her position as radiation oncologist helps with awareness-raising and increases referrals from other
departments. Since 1999 she has been involved as an advocate for educating medical students and
health workers in palliative care, and since the implementation of the National Cancer Control
Programme awareness of the need of palliative care has been rising slowly. The most common
cancers seen are head and neck and cervical; the biggest problem for most 90% of patients is
finances. Family collusion is a major issue, and a study they conducted in the department showed
they could increase the percentage of patients who know they have advancing cancer from 33% to
63% by counselling family members to allow them to tell the patient. Many elderly patients defer
decisions to their children and do not want to know details of their condition. The service successes
include being able to provide holistic care, education programmes and the large number of
volunteers. In the future they aim to open a palliative care department, advocate to improve access
to morphine in the rest of the state and conduct more research.

Deepa Muthaiya – Chair of DEAN Foundation, Chennai: interviewed by Lucy Selman, 25 January
2005. Length of interview: 61 minutes.

Here Deepa Muthaiya talks about how she first became interested in palliative care through reading
Sogyal Rinpoche’s ‘The Tibetan Book of Living and Dying’. She gives the history of the
Foundation’s work, from her initial concept to founding a trust and launching the service. She
discussed their homecare services, training programmes and contribution to changing the narcotic
laws of Tamil Nadu. Several case studies are discussed, raising issues such as stigma, awareness-
raising and the use of alternative therapies. Ms Muthaiya talks openly about how palliative care has

50
affected her own faith, and the importance of spirituality and religion to her patients. Finally, she
talks about the Foundation’s successes and obstacles, particularly finding funding.

Dr Krishnan Nair – Consultant Clinical Oncologist, Palliative Care Dept, Trivandrum Regional
Cancer Centre: interviewed by Lucy Selman, 29 January 2005. Length of interview: 52 minutes.

Here Dr Nair, one of the first physicians to work in palliative care in India, discusses the founding
of the Regional Cancer Centre in Trivandrum in 1981. A palliative care service started in 1986 with
help from training by Kathleen Foley at Sloan Kettering Memorial Hospital. Morphine became
available from the early 1990s and in 1996 nurse Thankum went to the U.K. for training. Dr Nair
discusses the staffing and training problems the RCC encountered, with 4 UK- trained physicians
moving to other specialities or not utilising the skills learnt abroad (nurse Thankum being the
exception to this). Dr Nair suggests that the further development of palliative care services at the
RCC was hindered by the conflict of interests of different groups. The RCC now provides good
home care in collaboration with 2 voluntary organisations, but the level of palliative care at the
hospital is, he says, not very high. He goes on to talk about what palliative care in India needs in
order to take off: primarily the training of more generalist healthcare providers and the spread of the
palliative care message through undergraduate programmes. With respect to palliative care, the role
of the RCCs should be only training, since their focus is on educational activities and the provision
of state-of-the-art treatment. Dr Nair finally talks about his current role as the Director of the private
Amar Institute of Medical Sciences and his plans for a palliative care ‘village’ as part of the new
campus.

Dr Namrata – Medical Officer, Shanti Avedna Sadam, Delhi: interviewed by Lucy Selman, 11
March 2005.

Dr. Naveen Rudolf Rodriguez - Palliative care physician, Kidwai Hospital and St John’s Medical
College, Bangalore: interviewed by Lucy Selman.

Dr Naveen talks here about his work in Bangalore at Kidwai Hospital and St John’s Medical
College, where he recently started working with the palliative care team. He describes his initial
calling to palliative care as something intimately tied to his own spiritual quest as a Christian, and a
project he did on spirituality as part of a course in Calicut, Kerala. He talks about his counselling
role at Kidwai hospital pain clinic and the place of religion in patients’ lives, and how he came to
work at St John’s a month previously. At St John’s palliative care is offered as an addition to the
pain control service, with postgraduate students assisting in running day care and an OPD. They
also run awareness raising programmes to counteract the ignorance and stigma which still exist. He
goes on to talk about the differences between working in Bangalore city and Kerala and the training
of volunteers at Kidwai and in Calicut. He discusses the role of volunteers at Kidwai in providing
counselling and social support for patients, such as the provision of clothes. Morphine availability
and prescription is covered, as well as the problem of providing continuous care in Bangalore. He
talks about the importance of awareness raising and spiritual awareness in palliative care and
emphasises the need for joint action between palliative care services rather than rivalry between
them.

Dr Matthews Numpeli - Programme Executive, Neighbourhood Network in Palliative Care,

Malapurram: interviewed by Lucy Selman, 12 January 2005, length of interview 1 hour 16 minutes.
Also, interviewed by Michael Wright, 2005.

Dr Numpelli tells of his background as a member of a middle class family with 4

brothers and 1 sister. His father was a teacher and education figured prominently
in the family. As he entered medical school he retained an interest in politics and
became involved in political activities, opposing plans to privatise medical
colleges. Holding fast to his principles, he was interested in community medicine
and found himself at odds with the culture of medicine until he undertook a
51
student placement in palliative care. Finding a niche which suited his interests and beliefs,
Matthews took the training course at Calicut and was eventually appointed Programme Executive
for the NNPC in Malpurram. He goes on to speak of the ways in which the NNPC scheme is owned
by the community and how volunteers have come forward in great numbers. He tells how education
was provided for members of the community and how from small beginnings a comprehensive
programme was devised which incorporates a wide range of modules. A supportive community then
became an empowered community. More than 150 groups have now been trained and a70%
coverage achieved. Given this concept and the willingness of people to care for members of their
own community, Matthews can see no limit to its benefit and effectiveness.

In this second interview, Dr Numpeli explains how the NNPC’s approach originated with the
observation that one of the clinics that had been set up was thriving where other clinics weren’t, and
that this clinic was run by ‘a society of common people’ rather than medical staff. Palliative care
hence became a social issue rather than a purely medical one, and with volunteer training provided
by Calicut the NNPC developed rapidly. The number of patients in Malappuram rose from 700 in
2001 to 3000 in 2004. In 2001 there were 7 clinics; there are currently 20, with 200 patients being
visited every week (January 2005). The basic NNPC objectives Numpeli identifies are to be a cost
effective method of providing palliative care and to empower local communities to look after their
own patients. He describes how the NNPC groups are set up and function and the advantages of
volunteers being locally based, particularly when raising funds. In Malappuram, 100,000 local
people participate in raising 95% of funding, mainly through small donations. Dr Numpeli also
discusses how the programme has changed since its inception, especially in terms of the role of
volunteers, who now run the programmes and provide homecare for patients with all painful
conditions, not just terminal. Finally, Dr Numpeli talks about the community participation
workshop held in Manjeri in December 2004; future plans for the training of government staff and
the development of the ‘Kerala Model of Health Care.’

Dr Ooman Ranjit Mathew and Dr Molly Mathew - :interviewed by Rosemary Mingins, 12

February 2005

Dr Gayatri Palat – Amrita Institute of Medical Sciences: interviewed by Lucy Selman, 1 February
2005.

Prof Firuza Patel - Head of Palliative Care Service, Chandigarh Hospice: interviewed by Michael
Wright , 12th February 2004. Length of interview: 27 minutes.

In this interview, Firuza Patel tells of the formative visit of the Australian Prof
Roger Cole in 1993, who introduced palliative care to the Radiotherapy Department.
Despite having injectable morphine, it took a further two years to procure the first
morphine tablets. Firuza tells how she came to England for training with Robert
Twycross (1998) and of her placement in Shrewsbury. She outlines how the
palliative care service developed from an outpatient clinic at the Post Graduate
Institute (PGI) Radiotherapy Unit (1998), to a home care service (2000), and a 10-
bedded inpatient hospice (2003) run in association with the UT Red Cross
organization. She describes how coverage has been increased throughout the region (70% of
patients travel more than 100 kilometres), how continuity of care has been established; and how
supportive relationships have been established with a neighbouring Temple and an old person’s
home. During 2003, 138 patients were admitted and plans are currently in hand to establish a
daycare service, expand the inpatient facilities to 20 beds and establish a bereavement support
group. Key among many successes is the way the service has become accepted within the
community.

Dr Manisha Pradhan – Physician, Indore Cancer Foundation, Indore: interviewed by Michael

Wright, 12 April 2005. Length of interview: 26 minutes.

52
Dr Biju Raghavan and Dr Biju Hanikaran – Post graduate students, Dept. of Pain and Palliative
Medicine, Amrita Institute of Medical Sciences (AIMS), Kochi: interviewed by Lucy Selman, 1
February 2005.

Dr Rajagopal – Head of Palliative Care, Amrita Institute of Medical Sciences, Kochi: interviewed
by Lucy Selman, 1s February 2005. Length of interview: 17 minutes. Also interviewed by David
Clark, 24 January 2003.

In this second interview, Dr Rajagopal talks about his move from the Institute of Palliative
Medicine in Calicut and his current work at AIMS, particularly education and awareness raising
among medical staff, the process of trying to get palliative care on the medical curriculum and
advocacy work at state and federal levels. He discusses the benefits and drawbacks of working in a
big institution, his future plans and the problems facing palliative care in India.

Mrs Hema Ramana – Nurse, Samraksha HIV/AIDS Hospice, Bangalore: interviewed by Lucy
Selman 6 February 2005. Length of interview: 25 minutes.

Hema Ramana is a nurse at Samraksha HIV/AIDS organisation in Bangalore, which has numerous
rural clinics throughout Karnataka state as well as 7 urban clinics. Here she talks about how she
became involved in palliative care and HIV/AIDS work. She discusses the terrible stigma facing
AIDS patients and obstructing the work of their centres, as well as the increasing need for palliative
care in the field and how HIV is being spread. She emphasises the need for awareness raising and
gives details of the training Samraksha provide for medical staff.

Mr Kishore Rao – Managing Trustee, Karunashraya Bangalore Hospice Trust, Bangalore:

interviewed by Lucy Selman, 5 January 2005. Length of interview: 1 hour, 7 minutes.

Kishore Rao is the Managing Trustee of the Bangalore

Hospice Trust and Karunashraya Hospice. Here Mr Rao talks
about the history of the Bangalore Hospice Trust, from its
foundation in 1994 and the start of the homecare service to the
opening of the 50-bed hospice inpatient unit in 1999. He
outlines the kind of total care provided using consultants,
volunteers and counsellors. He discusses the ethical and
financial problems they face, the spiritual care provided and
the socio-economic background of the patients. He goes on to
talk about what restricts the service, as well as their successes
to date, including the state award they recently won. Finally,
he talks about their successful twinning arrangements with the Shropshire Hospice and St Joseph’s
Hospice, and the hospice’s needs and future priorities.

Dr P Bhattacharya (Head of Palliative Care Division) and Dr V Rastogi (Physician)- Pain and
Palliative Care Clinic, SS Hospital, Banaras Hindu University, Varanasi: interviewed by Lucy
Selman, 25 April 2005. Length of interview: 1hr 15 minutes.

Dr Suresh Sanchetee - Chief medical Oncologist & Managing Director, Sanchetee Hospital &
Cancer Institute, Jodphur: interviewed by Lucy Selman, 28 March 2005. Interview length: 1hr 33
minutes.

Mr Surendra Shah – Volunteer, Tata Memorial Hospital, Mumbai: interviewed by Lucy Selman,
4 April 2005. Length of interview: 36 minutes.

Dr Rosalie Shaw – Asia Pacific Network: interviewed by Rosemary Mingins, 12 February 2005.

53
Charlet Soundavarajan - Superintendent and Counsellor, Arulagam Hospice (HIV/AIDS),
Bangarupuram: interviewed by Lucy Selman, 26 January 2005.

Dr Anuradha Sowani – Medical Director, Cipla Centre for Palliative Care in Cancer, Pune:
interviewed by Lucy Selman, 7 April 2005

Here Dr Sowani talks about her career in palliative care and the work of the centre. She previously
worked as a medical oncologist in the UK for 6 years, before becoming interested in palliative care
after hearing Gilly Burn talk and learning of its need through her own work. She subsequently did
both the palliative medicine course in Oxford and the diploma in Cardiff, and became convinced of
the need to change the western models to build on the strengths of the Indian environment, such as
strong family connections. The idea of the Cipla centre, which opened in 1997, is to work in
partnership with family members, and one family member stays with each patient. All the 50 beds,
care and drugs are provided free of cost. Training is a major component of the work they do: since
1999 they have been running monthly courses for mixed groups of about 30 doctors and nurses
(occasionally social workers, tutors and volunteers attend too). Some have opened their own centres,
but for nurses continual rotation of work place and lack of authority are problems. Another problem
is that some private doctors don’t want to let patients ‘slip from their clutches.’ Dr Sowani also
raises awareness through lectures in rural areas of the state, but the biggest publicity has been word-
of-mouth from patients’ families. At the centre they have 3 full-time doctors, 2 senior matrons who
also trained in Oxford, 2 social workers, numerous nurses and 80 volunteers. Volunteers provide
many services, e.g. yoga and meditation, distraction therapy, gardening and creative activities. Staff
are supported through counselling with other trained staff as needed. In general terms, Dr Sowani
talks about the future of palliative care in India, the expansion of palliative care as a specialty but
also the lack of priority it is inevitably given in a country still lacking basic health care in some
regions. Being taken on board by the government and being made part of the medical curriculum
would be big steps forward. AIDS remains a very sensitive area and Cipla are looking to open an
AIDS-specific site in future. They believe it has to be a separate unit owing to social stigma, but Dr
Sowani recognises this is problematic. She believes AIDS to be a huge national issue, and has
concerns about the lack of accurate data on epidemiology. Finally, she discusses ways in which
ideas and knowledge could be shared more widely with other members of the palliative care
community in India, such as conferences, statements of consensus and good practice, and
publishing more research and discussion papers.

Mr. K. Srivrnivasa – Marketing Director :interviewed by Lucy Selman, 15 January 2005. Length
of interview: 4 minutes.

Mr. K. Srivrivasan is the marketing director of the newspaper ‘M/s Mathrubhoomi’, local to Wynad
in Kerala. Here he talks about why the newspaper decided to fund the NNPC group’s 15-day
rehabilitation workshop for paraplegic patients. The interview was conducted on 15th January 2005,
palliative care day in Kerala, before the inauguration of the workshop

Sister Lalitha Teresa – Administrator, Jeevodaya Hospice, Chennai: interviewed by Lucy Selman,
24 January 2005.

Sister Nadita Teresa – Geobodia Hospice, Chennai: interviewed by Lucy Selman,

Kumari Thankam – Sister-in-Charge, Trivandrum Regional Cancer Centre, Trivandrum:

interviewed by Lucy Selman, 29 January 2005.

Joby Thomas - Public relations officer and medical social worker, Jeevodaya Hospice, Chennai.:
interviewed by Lucy Selman, 24 January 2005.

54
Dr Mallika Tiruvadanan - Head of Lakshmi Pain and Palliative Care Clinic, Chenna: interviewed
by Lucy Selman, 25th January 2005, length of interview 59 minutes. Also interviewed by Michael
Wright, 2004, length of interview 41 minutes.

Mallika tells how she comes from a family of physicians and how she and her
sister followed in the family tradition. She speaks of her interest in pain
management, how she trained as an anaesthesiologist, and how she developed an
interest in communication skills - something her colleagues found a little odd.
After 2 years in England, she was frustrated when she returned home and did not
at that time find the range of medicines and facilities she worked with in Britain.
In 1999, Mallika’s father suffered chronic, unrelieved back pain. Distressed at his
condition, Mallika took him to Calicut to be treated by Dr Rajagopal and found it
a life-changing experience. She returned to take the foundation course later that year and became
totally committed to palliative care. Returning to Chennai, she immediately established a clinic,
referring difficult problems to Calicut for advice. From inception, Mallika’s treatment was free of
charge, and in 2001, she founded a trust – the Lakshmi Pain and Palliative Care Clinic. Her
intention is to make every aspect of the service free. At the moment, a modest charge is incurred for
overnight accommodation since her private practice rents premises from the Sundaravadanan
Nursing Home (Hospital). In extreme cases, funds are found from the trust. Mallika has since taken
the 6 weeks course at Calicut and the diploma course from Edith Cowan University, Australia.
Plans for the future include a fundraising strategy, staff recruitment, the development of education
courses, and wider palliative care coverage.

Dr Joe Varghese – Programme Director, Christian Medical Association of India: interviewed by

Lucy Selman, 11 March 2005

Dr Geetha Vijay – Physician, Word and Deed Hospice, Edmattan: interviewed by Lucy Selman, 1
February 2005

Dr Grace Wazita, Nurse Sophi (CanSupport Homecare Team) and Kamini C. Wijeysundera
(Nurse specialist from Singapore): interviewed by Lucy Selman 7 February 2005. Length of
interview 30 minutes.

Here Dr Grace Wazita talks about a patient just visited at home. Later there is a group discussion
involving Nurse Sophi and Nurse specialist Kamini Wijeysundera from Singapore. They discuss the
problems CanSupport faces, including problems with referral, the attitude of doctors and
oncologists, traffic and the long distances covered. They also talk about the recent course in
palliative care held by CanSupport, at which Wijeysundera taught, and cultural issues such as
physical contact and how best to support carers.

Dr Zulaiha – Physician, Anwar Memorial Hospital, Alwaye: interviewed by Lucy Selman, 1

February 2005.

55
PUBLIC HEALTH CONTEXT

Population

India’s population is estimated to be approximately 1,065,462,000117. Hindi is the national language

and primary tongue of 30% of the people; there are 14 other official languages: Bengali, Telugu,
Marathi, Tamil, Urdu, Gujarati, Malayalam, Kannada, Oriya, Punjabi, Assamese, Kashmiri, Sindhi,
and Sanskrit; Hindustani is a popular variant of Hindi/Urdu spoken widely throughout northern
India but is not an official language. English is an important language for national, political, and
commercial communication.

Religious groups include Hindu 81.3%, Muslim 12%, Christian 2.3%, Sikh 1.9%, other groups
including Buddhist, Jain, Parsi 2.5%118

Epidemiology

The WHO World Health Report (2005) indicates for India an adult mortality rate per 1000
population of 283 for males and 213 for females. Life expectancy at birth for males is 60.0; 63.0 for
females. Healthy life expectancy is 53.3 for males; 53.6 for females117.

In India, the commonest cancer diagnoses for men are head and neck (especially tongue and mouth),
stomach, lung and oesophagus. For women the most prevalent cancers are cervix, uteri, breast, head
and neck, oesophagus and ovary 2,119,120. According to the International Agency for Research on
Cancer, the number of death for all cancers (except non-melanoma skin) in 2002 was: 284,636
females; and 294,780 males121.

India's socioeconomic status, traditional social norms, cultural beliefs on sex and sexuality, large-
scale migration and a huge population of marginalized people make it extremely vulnerable to the
AIDS epidemic. Table 13 shows the United Nation’s estimated HIV and AIDS rates for India

Table 13 India HIV and AIDS estimates, end 2003 122

Adult (15-49) 0.9%

HIV prevalence rate (range: 0.5%-1.5%)
Adults (15-49) 5,000,000
living with HIV (range: 2 500 000-8 200 000)
Adults and children (0-49) 5,100,000
living with HIV (range: 2 500 000-8 500 000)
Women (15-49) 1,900,000
living with HIV (range: 710 000-2 400 000)
AIDS deaths
…
(adults and children)
(range: 160 000-560 000)
in 2003
Source: UN fact sheet 2004 update

UNAIDS reports:

The second phase of the National AIDS Control Programme (NACPII) has been established
through the National AIDS Control Organization (NACO), the Ministry of Health and Family
Welfare, and State AIDS Control Societies in every state.

56
India is one of the few countries that initiated HIV-prevention activities in the very early stages of
the epidemic and the country has maintained its commitment to prevention efforts.

In 2004, India introduced free antiretroviral treatment in government hospitals. The programme
initially began in the six high-prevalence states. Furthermore, 2004 brought a change in government
and an increased political commitment to implement a multisectoral programme on HIV and AIDS.

However, due to the vast size of the country, there are many challenges involved in expanding the
high-level commitment to all states and to the grass-roots level, as well as in involving ministries
and departments other than health, and in scaling up interventions to meet the projected needs for
prevention and care.

Health care system

In 2001, the total per capita expenditure on health at the average exchange rate (US$) in India was
30. The total expenditure on health as a percentage of gross domestic product (GDP) was 6.1%117.
India has a per capita expenditure on health which is lower than many other countries in Asia
(Table 14), but its health expenditure as a percentage of GDP is one of the highest in Asia (Table
15).

Table 14 and 15 Total health expenditure (US$) per capita and as a percentage of GDP:
countries of Asia

Table 14 Table 15
Health expenditure (US$) per capita: Health expenditure (US$) as a
Asia percentage of GDP: Asia
Country Per capita Country %GDP
Japan 2476 Japan 7.9
Singapore 898 INDIA 6.1
Republic of Korea 577 China 5.8
Malaysia 149 Republic of Korea 5
Thailand 90 Bhutan 4.5
China 63 Thailand 4.4
Sri Lanka 32 Singapore 4.3
INDIA 30 Malaysia 3.8
Philippines 28 Sri Lanka 3.7
Pakistan 13 Pakistan 3.2
Bhutan 12 Bangledesh 3.1
Bangledesh 11 Philippines 2.9

Source: WHO World Health Report 2005117

Political economy

India's economy encompasses traditional village farming, modern agriculture, handicrafts, a wide
range of modern industries, and a multitude of support services. Government controls have been
reduced on foreign trade and investment, and privatization of domestic output has proceeded slowly.
But continued social, political, and economic rigidities hold back needed initiatives. The economy
has posted an average growth rate of 6.8% since 1994, reducing poverty by about 10 percentage
points. India is capitalizing on its large numbers of well-educated people skilled in the English
language to become a major exporter of software services and software workers. Despite strong
growth, the World Bank and others worry about the combined state and federal budget deficit,
running at approximately 9% of GDP. The huge and growing population is the fundamental social,
57
economic, and environmental problem. In late December 2004, a major tsunami took at least 60,000
lives in India and caused massive destruction of property.

Despite impressive gains in economic investment and output, India faces pressing problems such as
the ongoing dispute with Pakistan over Kashmir, massive overpopulation, environmental
degradation, extensive poverty, and ethnic and religious strife118.

GDP per capita is Intl$1,568. Compared with other countries in Asia this is low (Table 16).

Table 16 GDP per capita (Intl $): countries of Asia, 2002

Country GDP per capits (Int $)

Japan 26,860
Singapore 25,588
Republic of Korea 19,253
Malaysia 9,253
Thailand 7,248
Philippines 5,231
China 4,460
Sri Lanka 3,540
Pakistan 1,920
Bangledesh 1,734
Bhutan 1,709
INDIA 1,568

ETHICAL ISSSUES

From interviews conducted with people involved with hospice and palliative care in India, the
following ethical issues were identified (Table 17):

Table 17 Identified ethical issues

Category Issue
Patient Confidentiality
Stigmatisation
Disclosure of diagnosis
Decision-making
Patient and family tension
Marginalisation of some patients e.g. HIV,
destitute
Service Euthanasia
Expectations surrounding curative treatment
Inadequate resources
Access to care
Access to opioids
Social and cultural Poverty
Social exclusion
Cultural beliefs

In the following extracts, those involved in palliative care from across India elaborate on the ethical
issues they encounter:

58
 About 85 per cent of our patients are very, very poor. They come to us at a stage where what
little resources they have have been spent on the curative treatment. As you know, almost all
medical care in India is paid medical care, it’s not, there is no national health service for
example, there’s very little insurance that our patients can go in for, so most of it is paid for. So
by the time they come to us, when curative treatment is over, they’re absolutely drained from
the financial point of view. So one of the things that funders, insensitive funders ask us is,
since we’re giving an excellent set of care, why don’t we make it paid care? Why don’t we ask
the patients to pay for what ... now that’s something that, it’s an ethical question. Dr K Rao,
Bangalore Hospice Trust, Karnataka, south India 8

Disclosing has been always a problem. The tightly knit family bonds may be part of the reason
for this problem that we face. We have patients coming and requesting us not to tell the
prognosis to their wife and children. And we also have the other way round, the family
requesting us not to disclose the truth of the patient that the fact that his life expectancy is cut
short. We are being told not to disclose and I think this is the main ethical issue that we
have…and so when we try to break bad news we always bear in mind that truth, although it
may not be palatable, if it is done in the proper way they do understand. And if we can’t
straight away break bad news or a period of time when we take them into our trust and
confidence, in the midst of the family we touch hard facts and hard realities, and I think the
initial road blocks are overcome when we are familiar with them and when they are familiar
with us. Dr Cherian Koshy, Trivandrum Regional Cancer Centre, Kerala, south India 56.

In fact one of the problems which is more common in India is that relatives don’t want to tell to
the patient and what we realise is that the patient knows in their heart of hearts that he has
cancer and they are playing a sort of a hide and seek game with each other, relatives don’t want
to show to the patient that he has cancer and patient doesn’t want to reveal it because he sees
the difference in them, there’s more care being done, sometimes they’re educated they can read,
they can talk to other patients, they come to know about it and there is some change in their life
and their attitude of relatives towards them so this hide and seek game, this is very difficult.
Then another problem here is that financially they are a little bit poor. Dr Aarti Patel,
Jawaharlal Nehru Cancer Hospital and Research Centre, Madhya Pradesh, central India
15
.

In a high tech hospital, sometimes when one goes and says “this patient is dying, do we have to
continue IV fluids, do we have to do the blood transfusions”? It is kind of shocking to many
colleagues, because of course if a patient has a low urine output or a low haemoglobin, you
should transfuse so, it takes a little bit of education to explain why death is not necessarily a
medical failure, that it is something that comes to all of us and fighting to postpone it by a few
hours is not necessarily a medical calling or a good thing to do. That is one. Dr Reena George,
Christian Medical College and Hospital, Tamil Nadu, south India 49.

FURTHER READING

Barbara Hind, Cansupport (2004) Touching Lives. CanSupport India: New Delhi

Graham F, Clark D (2005) Addressing the basics of palliative care. Indian Journal of Palliative
Nursing 11(1): 2-5

Graham F, Clark D (2005) Definition and evaluation: developing the debate on community
participation in palliative care. Indian Journal of Palliative Care 11: 2-5

Gupta H (2005) Community participation in palliative care: A comment. Indian Journal of

Palliative Care 11: 19-21

59
Gupta, H. (2004) How basic is palliative care? Indian Journal of Palliative Nursing Vol. 10 (12):
600-601

Joranson DE, Rajagopal MR, Gilson AM (2002) Improving access to opioid analgesics for
palliative care in India. Journal of pain and symptom management 24: 152-159

Kumar S (2000) National Palliative Care Policy for India. Indian Journal of Palliative Care 6: 62-
63

Kumar S (2005) Community programmes in palliative care: what have we learned? Indian Journal
of Palliative Care 11: 55-57

Paleri A, Numpeli M (2005) The evolution of palliative care programmes in northern Kerala. Indian
Journal of Palliative Care 11: 11-15

Pandey M (2004) Quality of life of patients with cancer in India: challenges and hurdles in putting
theory into practice. Psycho-oncology 13: 429-433

Rajagopal MR (2001) The challenges of palliative care in India. The National medical journal of
India 14: 65-67

Rajagopal MR, Joranson DE, Gilson AM (2001) Medical use, misuse, and diversion of opioids in
India. Lancet 358: 139-143

Rajagopal MR, Venkateswaran C (2003) Palliative care in India: Successes and limitations. In Pain
and Palliative Care in the Developing World and Marginalized Populations: A Global Challenge,
Rajagopal MR, Mazza D, Lipman AG (eds) pp 121-128. The Haworth Medical Press: Binghamton

Stjernsward J (2005) Community participation in palliative care. Indian Journal of Palliative Care
11: 22-27

Stjernsward J, Clark D (2004) Palliative medicine-a global perspective. In Oxford Textbook of

Palliative Medicine, Doyle D, Hanks G, Cherny N, Calman K (eds) pp 1197-1224. Oxford
University Press: Oxford

Wright M, George R, Mingins R (2005) Exploring the meaning of spiritual care in the Indian
context: findings from a survey and interviews. ? ?: 221-226

60
ACKNOWLEDGEMENTS

This report is a result of a team of people based at the International Observatory on End of Life
Care. Many thanks to Lucy Selman for the fieldwork she carried out in India over a nine month
period which provided so much important information. Thanks also to Anthony Greenwood and
Lynne Hargreaves who provided administration and technical support for the duration of the project.

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