Support Care Cancer (1998) 6:81–84 Springer-Verlag 1998
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Santosh K. Chaturvedi 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
SUPPORTIVE CARE INTERNATIONAL
Palliative care in India
Abstract While India has a long tradition of home-based spiritual and religious care of the dying, there has been no contemporary palliative care until relatively recently. The existing and planned palliative care services in India are presented, and future perspectives and the opportunities for training for both professionals and lay volunteers are discussed.
Key words Pain management Palliative care Terminal illness Training Volunteers 7
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some do offer such care in one form or another. There are pain clinics in some major hospitals that also treat Traditional palliative care in India has been practised cancer pain. There are only a couple of separate dethrough the ages, with home-based spiritual and reli- partments or sections of palliative care in cancer hospigious care of the dying according to traditional customs tals and the Regional Cancer Centres. The first palliaand rituals. However, modern or contemporary pallia- tive care out-patient clinic has recently been opened in tive care has been established only recently. One factor Calicut. This centre is also involved in the training of in the lack of medically oriented palliative care has nurses and doctors in palliative care. It has been nomibeen the necessity for the relatively small number of nated as the WHO Demonstration Project for Pallia tive health professionals in the country to manage an ex- Care. There are pain clinics in most cancer centres, but tremely large number of people with all diseases and comprehensive palliative care services are not available illnesses, which has meant that few could spare the time in many. Cipla Palliative Care Centre, Pune, has recentfor palliative care owing to their preoccupation with cu- ly been completed and has in-patient palliative care and rative treatment. Coping with the therapeutic or cura- educational facilities. The Occupational Therapy centre at Tata Memorial tive aspects of the large number of cancer patients in their hospitals has left oncologists little time to think Hospital, Bombay, provides effective, indigenously deabout palliative aspects. Cancer patients in India seek veloped, low-cost rehabilitative measures for survivors. treatment when their disease is fairly advanced, signify- Similarly, speech therapy and counselling services for laryngeal cancer patients are well developed in some of ing that palliative care should be the major focus. the cancer hospitals, and these have proved to be supportive for this group of cancer patients. Laryngectomy and stoma clubs have emerged in some cities. Palliative care services Similarly, hospices, such as the Shanti Avedna Most cancer centres do not have a fully fledged service Ashram at Bombay, Goa and Delhi, Sevagram in Kerthat could provide palliative care and support, but ala, and Jeevodaya at Chennai, provide palliative care
Introduction
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Impressions from the work of the Home Care Team
and support for terminally ill cancer patients. Karunashraya, another hospice and centre for care of the terminally 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 India. The Bangalore Hospice Trust of the Indian Cancer Society has been providing home care for the terminally 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 patients in their homes and provide emotional support and advice about symptom relief. Oncologists from various hospitals refer cases to the home care team, who then visit the patient and his or her family at home. Alternatively, 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 control 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 patients, 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 individuals 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 atmosphere for the home care team. To date, the team has cared for 248 patients and their families. Nearly twothirds of these patients were women. The team also offers services to the elderly and to children. They have an active liaison with oncologists and the patients’ general practioners. All cases are supervised by a team of supervisors, and difficult psychosocial problems are discussed 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.
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Studies on the use of morphine, oral analgesics and radiotherapy for pain relief have also been conducted. There is a relative lack of systematic research on palliative care.
the care of terminally ill patients attend the group. Volunteers 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. Palliative care education and training The meeting takes the form of discussion of difficult cases seen during the month and discussion on topics Training in palliative care can be achieved in different related to the care of the terminally ill, led either by an ways. Over the last few years orientation courses have invited expert or by a group member. Some of the tobeen conducted on palliative care, but hardly any systepics that have been discussed are pain management, matic teaching is done at other cancer centres or in the symptom control, nutrition, management of a suicidal medical colleges. Some professionals have had the oppatient, noncompliance, collusion, effective communiportunity of training at some of the leading centres. cation on death and dying, bereavement, spirituality, There are three persons (a radiotherapist, a chemotheruse of nonconventional treatment methods, assisted apist, and an anesthetist) in whole the country who suicide, and care of the terminally ill child. Issues rehold a qualification in palliative care (diploma in pallialated to staff stress and its assessment and management tive medicine)! are discussed periodically. Cancer Relief India (CRI) in collaboration with the The resource persons in the VSG help the volunCancer and Palliative Care Unit of the WHO, the Inteers in crisis situations, such as management of disternational School for Cancer Care, the Macmillan tressing physical conditions, handling severe emotional Cancer Relief fund, and Global Cancer Concern have reactions in patients and their families, and helping the organised training for many health care professionals volunteers to handle their own feelings if necessary. throughout India. This can be done in the monthly meetings or by telephone, and occasionally individual case supervision is provided. The Support Group is currently involved in compil Volunteers and support groups ing a manual for families caring for terminally ill paMany voluntary agencies, such as the Indian Cancer tients. This manual is intended to help family members Society, have recently arisen to provide support and caring for a terminally ill relative at home and will give palliative care for the cancer patients. A number of vo- simple methods of dealing with physical and psychologlunteer groups have become affiliated to different can- ical distress. In addition, the manual will address emocer hospitals. The volunteers are mainly survivors of tional and communication- and role-related issues cancer or relatives of cancer patients. They provide among families of the terminally ill in India. emotional support and advice on financial help for canThe active participation of palliative care specialists cer patients and their families. The state does not have and oncologists in the group meetings has helped the any provision for social benefits, security or insurance volunteers to acquire better management skills and has cover for cancer patients. Though most volunteers have also promoted better liaison between the patients and no formal training in counselling, they are able to help their physicians through the volunteers. Active particithe cancer patients and their families with sincerity, de- pation from group members and increasing attendance dication and personal warmth. Currently, these volun- at the meetings have made the work of this group intertary groups seem to be the mainstay of psychosocial esting and meaningful. The group has widened its activservices to the cancer patients. ities and is now called the Palliative Care Support The voluntary agencies involved in support for can- Group. 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- Indian Association for Palliative Care naging staff stress among volunteers and members of the group involved in palliative care. The Volunteer The Indian Association for Palliative Care was formed Support Group (VSG) began in August 1995, following in 1994. The Association holds an international confera workshop in July 1995 for volunteers concerned with ence every year. Dr. Robert Twycross from Oxford and the needs of the terminally ill. The VSG is an open Ms. Gilly Burn from Cancer Relief India are regular group that includes nurses, social workers, lay volun- educators and resource persons at these conferences. teers, oncologists, palliative care specialists and psy- The Association also publishes the Indian Journal of chiatrists. Members of several organisations involved in Palliative Care, which comes out twice a year.
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Many symposia, training courses and workshops on this subject have been conducted. Unfortunately, hardly 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 palliative 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 Cancer, 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. Importantly, 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. Availability 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 addiction 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.
