Support Care Cancer (1998) 6 : 81–84

Q Springer-Verlag 1998 SUPPORTIVE CARE INTERNATIONAL

Santosh K. Chaturvedi Palliative care in India

Prabha S. Chandra

The authors of this report are Life
Fellows of the Indian Association of
Palliative Care and Members of the
Multinational Association for Supportive
Care in Cancer. Dr. Chaturvedi was the
first Vice President of the Indian
Association of Palliative Care from 1994
to 1997.
S. K. Chaturvedi, M.D. (Y)
P. S. Chandra, M.D.
Department of Psychiatry, National
Institute of Mental Health and
Neurosciences, Bangalore, India
Abstract While India has a long Key words Pain management 7
tradition of home-based spiritual Palliative care 7 Terminal illness 7
and religious care of the dying, Training 7 Volunteers
there has been no contemporary
palliative care until relatively re-
cently. The existing and planned
palliative care services in India are
presented, and future perspectives
and the opportunities for training
for both professionals and lay vo-
lunteers are discussed.

some do offer such care in one form or another. There

Introduction
Traditional palliative care in India has been practised
through the ages, with home-based spiritual and reli-
gious care of the dying according to traditional customs
and rituals. However, modern or contemporary pallia-
tive care has been established only recently. One factor
in the lack of medically oriented palliative care has
been the necessity for the relatively small number of
health professionals in the country to manage an ex-
tremely large number of people with all diseases and
illnesses, which has meant that few could spare the time
for palliative care owing to their preoccupation with cu-
rative treatment. Coping with the therapeutic or cura-
tive aspects of the large number of cancer patients in
their hospitals has left oncologists little time to think
about palliative aspects. Cancer patients in India seek
treatment when their disease is fairly advanced, signify-
ing that palliative care should be the major focus.
Palliative care services
Most cancer centres do not have a fully fledged service
that could provide palliative care and support, but
are pain clinics in some major hospitals that also treat
cancer pain. There are only a couple of separate de-
partments or sections of palliative care in cancer hospi-
tals and the Regional Cancer Centres. The first pallia-
tive care out-patient clinic has recently been opened in
Calicut. This centre is also involved in the training of
nurses and doctors in palliative care. It has been nomi-
nated as the WHO Demonstration Project for Palliative
Care. There are pain clinics in most cancer centres, but
comprehensive palliative care services are not available
in many. Cipla Palliative Care Centre, Pune, has recent-
ly been completed and has in-patient palliative care and
educational facilities.
The Occupational Therapy centre at Tata Memorial
Hospital, Bombay, provides effective, indigenously de-
veloped, low-cost rehabilitative measures for survivors.
Similarly, speech therapy and counselling services for
laryngeal cancer patients are well developed in some of
the cancer hospitals, and these have proved to be sup-
portive for this group of cancer patients. Laryngectomy
and stoma clubs have emerged in some cities.
Similarly, hospices, such as the Shanti Avedna
Ashram at Bombay, Goa and Delhi, Sevagram in Ker-
ala, and Jeevodaya at Chennai, provide palliative care
82
Impressions from the work of the Home Care Team
and support for terminally ill cancer patients. Karuna-
shraya, another hospice and centre for care of the ter-
minally ill, is to be opened in Bangalore.
Home care
There is a unique home care service for terminally ill
cancer patients at Bangalore, the first of its kind in In-
dia. The Bangalore Hospice Trust of the Indian Cancer
Society has been providing home care for the terminal-
ly ill since 1994. The home care team consists of trained
nurses and trained counsellor/social workers who use a
tricycle autorickshaw to visit terminally ill cancer pa-
tients in their homes and provide emotional support
and advice about symptom relief. Oncologists from var-
ious hospitals refer cases to the home care team, who
then visit the patient and his or her family at home. Al-
ternatively, members of patients’ families contact the
service direct. The team works under the supervision of
the patient’s physician; for those who cannot afford to
pay for it, the service is free. The nurses in the team
handle physical problems, such as bed sores, and con-
trol of such symptoms as constipation, anorexia and
nausea. Pain management is one of the important aims
of the home care team, and they often have to convince
reluctant family members that it is acceptable to use
morphine for pain relief in the patients. The service is
available through the week during the day. The team
has to deal with various issues among terminally ill pa-
tients, such as depression, suicidal ideation, treatment
noncompliance, information about nonconventional
treatments, limited financial and medical resources and
poor social support. Family members are trained in
handling the patients’ problems and in simple symptom
control methods. The team also provides bereavement
support and visits the families at least once in all cases
after the death of the patient, and more frequently if a
specific intervention is required.
The team provides services to terminally ill individu-
als from all parts of the city and are helped in this by
their driver, who is an important part of the team. He
helps in establishing rapport with patients from lower
income groups and in providing a safe working atmo-
sphere for the home care team. To date, the team has
cared for 248 patients and their families. Nearly two-
thirds of these patients were women. The team also of-
fers services to the elderly and to children. They have
an active liaison with oncologists and the patients’ gen-
eral practioners. All cases are supervised by a team of
supervisors, and difficult psychosocial problems are dis-
cussed with mental health professionals involved in
cancer care. The team is also involved with the support
group for volunteers described later in this report. By
1998, the Bangalore Hospice Trust is planning to open
a 50-bed hospice called Karunashraya.
Palliative care research
Psychiatric aspects of cancer pain and palliative care
have been studied. Studies have also been carried out
on quality of life aspects and subjective well-being of
cancer patients, especially those receiving radiotherapy.

Studies on the use of morphine, oral analgesics and ra-
diotherapy for pain relief have also been conducted.
There is a relative lack of systematic research on pallia-
tive care.
Palliative care education and training
Training in palliative care can be achieved in different
ways. Over the last few years orientation courses have
been conducted on palliative care, but hardly any syste-
matic teaching is done at other cancer centres or in the
medical colleges. Some professionals have had the op-
portunity of training at some of the leading centres.
There are three persons (a radiotherapist, a chemother-
apist, and an anesthetist) in whole the country who
hold a qualification in palliative care (diploma in pallia-
tive medicine)!
Cancer Relief India (CRI) in collaboration with the
Cancer and Palliative Care Unit of the WHO, the In-
ternational School for Cancer Care, the Macmillan
Cancer Relief fund, and Global Cancer Concern have
organised training for many health care professionals
throughout India.
Volunteers and support groups
Many voluntary agencies, such as the Indian Cancer
Society, have recently arisen to provide support and
palliative care for the cancer patients. A number of vo-
lunteer groups have become affiliated to different can-
cer hospitals. The volunteers are mainly survivors of
cancer or relatives of cancer patients. They provide
emotional support and advice on financial help for can-
cer patients and their families. The state does not have
any provision for social benefits, security or insurance
cover for cancer patients. Though most volunteers have
no formal training in counselling, they are able to help
the cancer patients and their families with sincerity, de-
dication and personal warmth. Currently, these volun-
tary groups seem to be the mainstay of psychosocial
services to the cancer patients.
The voluntary agencies involved in support for can-
cer patients and their families have formed a network
based in Bangalore, with the purposes of providing
clinical case supervision and staff education and ma-
naging staff stress among volunteers and members of
the group involved in palliative care. The Volunteer
Support Group (VSG) began in August 1995, following
a workshop in July 1995 for volunteers concerned with
the needs of the terminally ill. The VSG is an open
group that includes nurses, social workers, lay volun-
teers, oncologists, palliative care specialists and psy-
chiatrists. Members of several organisations involved in
83
the care of terminally ill patients attend the group. Vo-
lunteers attending the group are involved in the care of
patients with cancer, AIDS and end-stage renal disease.
Three home care teams also form part of the group.
The group meets on the last Wednesday of every
month at the National Institute of Mental Health and
Neurosciences, Bangalore for about an hour and a half.
The meeting takes the form of discussion of difficult
cases seen during the month and discussion on topics
related to the care of the terminally ill, led either by an
invited expert or by a group member. Some of the to-
pics that have been discussed are pain management,
symptom control, nutrition, management of a suicidal
patient, noncompliance, collusion, effective communi-
cation on death and dying, bereavement, spirituality,
use of nonconventional treatment methods, assisted
suicide, and care of the terminally ill child. Issues re-
lated to staff stress and its assessment and management
are discussed periodically.
The resource persons in the VSG help the volun-
teers in crisis situations, such as management of dis-
tressing physical conditions, handling severe emotional
reactions in patients and their families, and helping the
volunteers to handle their own feelings if necessary.
This can be done in the monthly meetings or by tele-
phone, and occasionally individual case supervision is
provided.
The Support Group is currently involved in compil-
ing a manual for families caring for terminally ill pa-
tients. This manual is intended to help family members
caring for a terminally ill relative at home and will give
simple methods of dealing with physical and psycholog-
ical distress. In addition, the manual will address emo-
tional and communication- and role-related issues
among families of the terminally ill in India.
The active participation of palliative care specialists
and oncologists in the group meetings has helped the
volunteers to acquire better management skills and has
also promoted better liaison between the patients and
their physicians through the volunteers. Active partici-
pation from group members and increasing attendance
at the meetings have made the work of this group inter-
esting and meaningful. The group has widened its activ-
ities and is now called the Palliative Care Support
Group.
Indian Association for Palliative Care
The Indian Association for Palliative Care was formed
in 1994. The Association holds an international confer-
ence every year. Dr. Robert Twycross from Oxford and
Ms. Gilly Burn from Cancer Relief India are regular
educators and resource persons at these conferences.
The Association also publishes the Indian Journal of
Palliative Care, which comes out twice a year.
84
Many symposia, training courses and workshops on
this subject have been conducted. Unfortunately, hard-
ly any papers on palliative aspects are presented at the
biennial or mid-term conferences of the Indian Society
of Oncology or other conferences on cancer or pallia-
tive care. Professionals involved in palliative care have
strong links with other international bodies, such as the
International Association for the Study of Pain, the
Multinational Association for Supportive Care in Can-
cer, and the European Association for Palliative Care.
Future prospects
The palliative care movement here was slow to start,
but is rapidly gaining momentum. Teaching of pallia-
tive medicine and care is becoming more frequent. Im-
portantly, doctors and nurses are acknowledging the
relevance of palliative care. Palliative care is growing
up as a mainly home-based service in India, though
multidisciplinary palliative care units are also emerging.
Efforts are being made to include palliative care in the
regular medical and nursing education curricula. Avail-
ability of morphine is still a problem and its usage is
restricted, since it is made available only at a limited
number of special centres. Unfortunately, many cancer
patients suffer unnecessarily. Inhibitions about the use
of morphine, myths about its effects and fear of addic-
tion are still prevalent. More research in palliative care
is needed to give more confidence to the carers. Patient
and family education about palliative care needs to be
strengthened.