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Palliative care in India David Seamark PhD MRCGP 1 K Ajithakumari MD 1 Rachel Koshy MD 4 Clare Seamark MPhil MRCGP
Gilly Burn RGN 2
P Saraswathi Devi MD DA 3
J R Soc Med 2000;93:292±295
In a developing nation such as India it is understandable that healthcare initiatives have concentrated on detection and cure of infectious diseases and on public health measures such as vaccination and immunization and improved drinking water supply and sanitation. However, with improving standards of living and adoption of some Western habits such as tobacco use, patterns of disease are changing and the incidence and prevalence of cancer have increased1. This has led to a mounting need for palliative care. Lately the explosion in HIV and AIDS in India has made the requirement for palliative forms of treatment even more acute. The exact requirement for palliative care is hard to estimate because of de®ciencies in disease registration, communication dif®culties and the cultural stigma often attached to a diagnosis of cancer or, even more so, AIDS. Sources suggest that for cancer there are about one million new cases a year, with over 80% of patients presenting in stages III and IV1. Experience from cancer centres con®rms that two-thirds of patients with cancer are incurable at presentation and so have immediate need for palliation2. Table 1 shows symptoms in 440 patients at presentation in a Kerala clinic2. Studies at two palliative care clinics have indicated that the prevalence of pain among outpatients is 90±100%2,3. Around 80% of patients with cancer will die within one year of presentation. The burden connected with HIV/AIDS is harder to predict; the World Health Organization (WHO) estimated that India would have around ®ve million cases of HIV infection by this year. How many of these cases will progress to terminal AIDS is unknown, but the potential burden is vast. The pattern of cancer diagnosis in India differs from that in the West. For men the commonest cancers, in descending order, 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. The common head and neck tumours, related to the habit of chewing tobacco (often Honiton Group Practice, Marlpits Road, Honiton, Devon EX14 2NY, UK; 1Pain and Palliative Care Clinic, Medical College, Calicut, India; 2 Cancer Relief India, Oxford, UK; 3Pain Relief Unit, Kidwai Memorial Institute of Oncology, Bangalore; 4
292
Department of Anaesthesiology, Regional Cancer Centre, Trivandrum, India
Correspondence to: Dr David Seamark E-mail:
[email protected]
Table 1 Main physical symptoms in patients
presenting to a pain and palliative care clinic (n=440; data from Ref. 2)
Symptom
No. of patients
(%)
Pain
439
(100)
Weakness
365
(83)
Sleeplessness
349
(79)
Weight loss
314
(71)
Loss of appetite
212
(48)
Constipation
185
(42)
Nausea
160
(36)
Cough
152
(35)
Heartburn
131
(30)
Dif®culty in swallowing
125
(28)
Sore mouth
116
(26)
Breathlessness
100
(23)
83
(19)
Vomiting
combined with betel nut and lime), have effects including dysphagia, weight loss, pain, weakness, and inability to earn a living (there is no social security system in India). Advanced head and neck cancer can be dis®guring and malodorous. BARRIERS TO DELIVERY OF PALLIATIVE CARE
The barriers to adequate cancer pain relief have been discussed elsewhere4±6, but can be summarized as follows. Life in the widespread rural population is characterized by poor road and rail communications, poverty and low indices of nutrition and health7. Cultural attitudes, low literacy rates in many States of India (especially in rural areas), and ignorance of the meaning of the symptoms of cancer can substantially affect patient education, patient self-advocacy and patient±physician communication. These factors can affect the adequate assessment of pain. Developing countries generally view the illicit drug epidemic in Western nations with alarm. Fear that opioid availability in India will lead to drug abuse is a major reason for the tight governmental restrictions on the medicinal use of opioids. Opioid distribution is strictly regulated by the
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central and State governments8 and a health facility wishing to dispense opioids must obtain an opioid possession licence, a purchasing form, a transport permit and an import licence (a 1400 page book lists individual State laws governing morphine). Prescriptions for oral morphine can be written only by a hospital that is licensed to dispense opioids. Oral morphine is not available in commercial pharmacies. Ironically, India is one of the world's largest producers of opium but lags far behind Western Europe and the USA in consumption of morphine8. Linked with lack of opioid availability is a de®cit in physicians' knowledge regarding opioid administration and associated side-effects9. Many physicians are overly concerned about potential toxicities. Fear of respiratory depression or addiction commonly leads to delayed initiation or inadequate dosage. Furthermore, except in a few specialized pain centres, pain intensity is not routinely measured or documented, so that pain tends to be overlooked and undertreated. Medical personnel and facilities are scarce in India, with only 34% of physicians and 25% of all hospital beds located in rural areas even though most of the population is rural10. Nursing is a low-status job6 and not a profession young people are encouraged to enter; for this reason multidisciplinary team working is dif®cult. Strongly embedded attitudes regarding the mortality associated with cancer prevail amongst healthcare professionals and the public. Consequently the thrust in oncology is towards curing the disease rather than recognizing the gains in quality of life for patients that can be achieved by effective management of pain and symptoms. Linked with this is the assumption by patient and family that pain is an inevitable consequence of cancer.
and tailored education programmes in the UK. The pain and symptom relief aim was achieved by support for those striving to obtain oral morphine and by advocacy for greater access to pain-relieving drugs. Moreover, CRI funded palliative care posts in India, and in 1994 began four-year pump-priming for the establishment of the Pain and Palliative Care Clinic in Calicut (now a WHO-recognized model of delivery of palliative care for South-East Asia). Between 1993 and 1995, CRI and Cancer Relief Macmillan Fund in collaboration with WHO facilitated training of doctors and nurses in palliative care courses in the UK during a three-year Indo-British project10. CRI has also supported four doctors in their successful completion of the Diploma of Palliative Medicine at the University of Wales College of Medicine. In 1999 a nurse from Kerala was sponsored by CRI to be the ®rst nurse from India to complete the Diploma in Palliative Nursing at Oxford Brookes University. Individuals completing such specialist training make substantial personal and ®nancial sacri®ces. The development of palliative care services in India provides a good example of fruitful cooperation between charities, committed individuals from both Western and Indian health services and non-governmental organizations (NGOs) such as WHO. At the 6th annual meeting of the Indian Association of Palliative Care (Calicut, 1999) over 300 delegates met to learn from each other, present research ®ndings, share experiences and plan for the future. Tasks to be tackled in the immediate future included the implementation of home-based palliative care services, the ethical base of palliative care in India and the introduction of palliative care principles into medical student and student nurse curricula.
MODELS OF CARE
Inpatient care units
The concept of palliative care is relatively new to India, having developed over the past 15 years. Together with input from the WHO and specialists from the UK, Indian healthcare professionals have taken up the enormous challenge of delivering appropriate palliative care in India. The ®rst palliative care facility was a Western-style hospice founded by an Indian cancer surgeon inspired by St Christopher's Hospice in London. Subsequent initiatives included support by WHO to hospital-based clinics wishing to include pain and symptom control in their cancer centres. Of particular note has been the work of Cancer Relief India (CRI), a UK charity founded in 1990, which had the aims of educating doctors and nurses in palliative care and providing pain and symptom relief for cancer patients11. The education aims were met partly by peripatetic teaching by the charity director throughout India and partly by sponsoring Indian health professionals to attend specialist
The traditional Western model of a dedicated inpatient hospice has been adopted in certain areas. The ®rst was that of the Shanti Avedna Ashram, opened in Mumbai (Bombay) in 1986 and now extending to branches in New Delhi and Goa. Initially these inpatient units suffered from low occupancy, for reasons that probably included the notion that hospices were `houses of death' and the fear of contagion associated with a cancer diagnosis. Over the years these misperceptions have been gradually dispelled and occupancy has risen. The case for such high-cost units in a developing nation has been debated, since WHO in particular is keen to see wider coverage on a scale that is not feasible with stand-alone hospices. Some positive reasons for inpatient care include care for the destitute and homeless, care for marginalized groups (such as those with dis®guring and offensive wounds), and abolition of the fear and prejudice attached to a cancer diagnosis through
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the demonstration of what can be achieved by expert palliative care. Government regional cancer centres
There are eleven Government regional cancer centres, though not all of them focus on symptom relief clinics. A pain clinic at the Regional Cancer Centre, Trivandrum, Kerala, established with WHO subsidy in 1986, has demonstrated that effective pain control can be achieved for outpatients (Jeevy G, Sebastian P, Mappat V, Koshy RC, unpublished) and now supports three major satellite units. The palliative care centre in Calicut, Kerala, which in its ®rst year saw only two or three patients a day now caters for 50±60 patients a day. It is a truly regional service, with satellite clinics in surrounding towns aiming to offer coverage to half the cancer patients in the district (Rajagopal M, personal communication). The involvement of lay volunteers has greatly aided the expansion of these clinics; their work includes initial history-taking, explanation of medication regimens, provision of emotional support, educational initiatives and account-keeping.12 The Calicut model has become a WHO demonstration project as an example of high-quality, ¯exible and low-cost palliative care delivery in the developing world and illustrating sound principles of cooperation between government and NGOs13. Legislation is being enacted in Kerala State to simplify licensing procedures for buying, stocking and dispensing morphine.
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The pain clinic at Kidwai Memorial Institute of Oncology, Bangalore, responded to the need for pain control amongst patients with advanced disease by administering oral morphine solutions, prepared at the unit according to the Royal Marsden Formulary. Since 1988 morphine has been dispensed free of charge to all patients requiring it. To reduce the burden to patients of visiting the clinic every 15 days, a carer-held record was devised for repeat morphine prescriptions. This records medication, pain control as assessed by a simple visual analogue scale, side-effects, sleep patterns and other symptoms. It is presented at each visit by the patient's proxy. The pain and symptom control clinics with satellite units seen in Kerala seem a very appropriate model for reaching the maximum number of patients at minimum cost; however, Kerala is unusual in having the highest literacy rate and health indices in India14, and doubts have been expressed as to how feasible it would be to establish clinic services in other States. Domiciliary services
As a consequence of the geographic and economic problems and the debility of many patients, several domiciliary hospice services have been developed, examples being found in Bangalore, Calicut and Delhi. By entering homes these services gain insight into the patients' socioeconomic circumstances and can provide educational input and bereavement support15. They are more costly than clinic-
Box 1 Pain control and palliative care problems and solutions (adapted from Ref. 16 with permission) Problems
294
Solutions
1 Lack of awareness among medical personnel prevents delivery of palliative care
Disseminate basic information on palliative care through branches of the Indian Medical Association
2 Lack of awareness of palliative care in the public creates delays in bringing patients to palliative care units
Educate the public about the possibilities of palliative care through the press, radio and television
3 Opiophobia creates fear of turning patients into addicts
Teach physicians and the public that opioids are a safe way to relieve pain
4 Lack of availability of opioids
Generate pressure from the public to simplify existing complex rules and regulations
5 Silence about cancer diagnosis can prevent patients from seeking treatment
Discuss cancer diagnosis openly with patients and their families
6 Imitate only Western models of care
Create model of care adapted to Indian economy, culture and traditions, based on care at home and empowering families
7 Coexistence of multiple systems of medicine
Do not emphasize rivalry, but complementarity in India's rich medical heritage
8 Poverty
Encourage medical personnel to take the patient's ®nancial position into consideration when planning treatment
9 Transportation dif®culties can hamper access to palliative care centres
Rely on strength of the Indian family structure to treat patients by `remote control' with help of relatives
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based care; however, with the late presentation of cancer patients, the involvement is considerably shorter than that seen with domiciliary teams in the developed world. One team has estimated a cost of Rs 700 (£10) per visit based on one visit a week over a contact time of four weeks (Macaden S, personal communication). This cost can be borne only by wealthy patients or by subsidy. Combined inpatient and training centre
With funding from a pharmaceutical company a purposebuilt cancer palliative care and training centre has been opened in Pune, Maharastra. The centre operates a policy of short admissions of around 15 days during which symptom control is established and family members are trained to care for the patient at home. The training of families in palliative care builds on the strength of the Indian family structure and permits many patients to die at home completely cared for by their relatives. The families are taught to change dressings, dispense drugs, keep pain charts, and provide massage and physiotherapy as well as personal nursing techniques. Initial data reveal a length of stay of 15 days or less for over 50% of patients, with around 70% discharged home. Palliative care education centres
Several centres are linked with facilities that offer multidisciplinary training in palliative care. Examples include the Calicut Centre, Shanti Avedna Ashram, Mumbai and the Cipla Cancer and Palliative Care Training Centre, Pune. The Cipla Centre, the ®rst purpose-built palliativecare training centre of its kind in India, has extended its activities to training in the medical and nursing colleges. CONCLUSIONS
The potential of palliative care has come to public attention and several models of care delivery have emerged. Changes in State legislation will lead to better supplies of opioid analgesia in some areas. Box 1 lists some of the problems and solutions. Clearly, local situations require local solutions, but central and satellite pain and symptom relief clinics in Kerala provide hope for comprehensive coverage within existing economic and personnel constraints. Over the past 15 years the barriers to introducing palliative care in India have been gradually broken down and indigenous solutions to the challenge are emerging. Drs David and Clare Seamark received prolonged study leave to visit India from the
Acknowledgments
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Secretary of State for Health, UK. They also received a travel bursary from North and East Devon Health Authority. Thanks are due to the partners and staff of the Honiton Practice and to locums Dr Jonathan Richold and Dr Jane Bush; to Dr M R Rajagopal, Pain and Palliative Care Clinic, Calicut, for constructive comments and contributions; and to Dr Robert Twycross (Sobell House Oxford), Dr Luisito de Souza (Shanti Avedna Ashram, Mumbai), Dr Jan Stjernsward (Global Cancer Concern), Dr David Joranson (Madison, Wisconsin), and Dr Stanley Macaden (Bangalore Baptist Hospital). The Indian Association of Palliative Care Secretariat is at Pain and Palliative Care Society, Medical College (PO) Calicut, Kerala 673008 India; e-mail:
[email protected]. Cancer Relief India is at 2 Lewin Close, Oxford OX4 3JL, UK.
REFERENCES
1 National Cancer Control Programmes. Polices and Management Guidelines. Geneva: World Health Organization, 1995 2 Suresh Kumar R, Rajagopal MR. Palliative care in Kerala. Problems at presentation in 440 patients with advanced cancer in a south Indian state. Palliat Med 1996;10:293±8 3 Sebastian P, Varghese C, Sankaranarayan R et al. Evaluation of symptomatology in planning palliative care. Pall Med 1993;7:27±34 4 Koshy RC, Rhodes D, Devi Saraswathi, Grossman SA. Cancer pain management in developing countries: a mosaic of complex issues resulting in inadequate analgesia. Support Care Cancer 1998;6:430±7 5 Rajagopal MR. Problems of palliative care delivery in India. Indian J Pall Care 1996;2:31±3 6 Burn GL. A personal initiative to improve palliative care in India. Pall Med 1990;4:4 7 Abbasi K. The World Bank and world health: focus on South Asia. II: India and Pakistan. BMJ 1999;318:1132±5 8 Joranson D. Availability of opioids for cancer pain: recent trends, assessment of system barriers, new World Health Organization guidelines, and the risk of diversion. J Pain Symptom Management 1993;8:353±60 9 Jacox A, et al. Management of Cancer Pain Clinical Practice Guideline (Publication No. 9). Rockville: Agency for Health Care Policy and Research, 1994 10 Burn G. Promoting effective palliative care in India. Eur J Pall Care 1996;3:113±17 11 Webb PA. Cancer Relief in India. Eur J Cancer Care 1993;2:2 12 Rajagopal MR, Suresh Kumar K. Organisation of a palliative care serviceÐthe Calicut Experience. Indian J Pall Care 1997;3:15±19 13 Rajagopal MR, Suresh Kumar K. A model for delivery of palliative care in IndiaÐthe Calicut Experiment. J Pall Care 1999;15:44±9 14 Franke RW, Chasin BH. Kerala State, India: radical reform as development. Int J Health Serv 1992;22:139±56 15 Ajithakumari K, Suresh Kumar K, Rajagopal MR. Palliative home careÐthe Calicut experience. Pall Med 1997;11:451±4 16 Colleau SM, ed. Pain control and palliative care in India: problems and solutions. Cancer Pain Release 1998;11:3
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