Palliative Care.docx

Palliative Care Movement in Kerala, India: How it set a model?

Abstract From ancient period itself, Kerala holds a rich heritage of a plethora of curing practices. Several systems of treatments have emerged and flourished here to offer cure and relief to patients. Kerala, the birthplace of ayurveda, still attracts patients from all over the world. In addition to it, several ethnic medical systems also have rooted in Kerala. Generally these systems offer vital thrust on curing diseases with immediate and minimal effect. The aspect of relief for those beyond cure has yet to be acquired enough attention in these systems. Moreover the emotional dimensions of miseries of those on the verge of death have not attained sufficient momentum. The system of palliative care is a novel attempt towards this limited thrust area. Malabar region in Kerala has become a forerunner in it by showing way for the entire Kerala. Now the concept is slowly gaining momentum all over the state even seeking the attention of organised government mechanism. Hence it would be worthy to trace the history and functioning of palliative care movement and the present paper tries to evaluate the nature of evolution and role of palliative movement in the medical system of Kerala. Keywords: Palliative care, grey population

Introduction Kerala, the southern state of India, has always projected as a model by the social scientists mainly because of its achievements in education and health. The significant progress in these key sectors along with the enhanced social security measures has realized development in Kerala, even in the absence of growth in productive sectors. Even now, Kerala has marked significant progress through the commendable achievements of these service sectors. Hence it is important to enhance the quality of the services delivered by these prime domains.

A health system mainly performs three key roles to the people. Firstly it tries to ensure a robust practice capable of preventing diseases and maintain a healthy lifestyle. Secondly the system should adopt suitable measures to reverse and cure the diseases with immediate and minimal effect. Finally the system is responsible for extending relief measures for those patients who are beyond the level of cure but demand long term care and attention. The former two aspects of

prevention and cure have received sufficient attention in the general health system and policies. But the third aspect was almost eclipsed in the shadow of these tall pillars till recently and this segment is mainly dealt with the palliative care movement.

A health system will cater to the needs of people if and only if it is capable of satisfying these three basic dimensions of health care. Similar to the literacy programme in education sector, health sector also affords another vibrant programme termed ‘palliative care movement’. According to the Government of India, out of the 922 palliative centres in India, more than 850 centres are located in Kerala (Ministry of Health & Family Welfare, GoI, 2012). Even though in India 59 lakh people are in need of palliative care, only 2% are receiving palliative support.But in Kerala, this rate is 50% out of the 1.25 lakh patients who are in need of palliative assistance (IPM, 2013).

Palliative Care System In the advanced countries, palliative care system is an integral component of the total health care. It aids a patient’s right to live with dignity and die in peace. The World Health Organization in 2002 defined palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” (WHO, 2002). Palliative care is aimed at improving quality of life, by employing what is called “active total care”, treating pain and other symptoms, at the same time offering social, emotional and spiritual support (Palliative Care policy, Government of Kerala, 2002).The basic aims of the palliative care system are the following  Offers relief from pain through constant care and support  Enhance the quality of life by making them as lively as possible and extend emotional as well as psychological support  Relieve the patients from the fear on death and enable to admit dying as a normal phenomenon  Extend support to the family to cope with the situation

Palliative care: Indian Experience The initial policy attempt to palliative care was undertaken in India by the Central government through the framing of a National Cancer Care Policy in 1975. Later in 1984 it was modified as a pain relief policy by incorporating the local public health centres. But the unfortunate thing is that it did not materialize into a workable model except the policy initiative. But after this, from mid 1980s onwards medical professionals from cancer care domain recognized the need for practical measures to alleviate the severe pain associated with the cancer treatment. In connection with this some units were initiated in the cancer care centers located in Ahamedabad, Banglore, New Delhi, Mumbai, Thiruvananthapuram, and Varanasi (Shanmughasundaram et al, 2006; Khosla, 2012). The Indian Association of Palliative Care came into existence from Gujarat in 1985.

Healthcare Scenario of Kerala

Several socio economic factors specific to Kerala contribute to the development of palliative care system in Kerala. These features are contextual to the state and significant in the socio economic domain of the state.

1. High Life Expectancy Kerala tops the country in terms of life expectancy of people. The average life expectancy is 72 years for female and 68 years for male. The overall life expectancy is 74.1 years in contradiction with the national average of 65 years (Economic Review, 2018). It is comparable to the advanced countries in the world. According to a population projection by State Planning Board, the growth of old population will grow at a rate of 7.5% during 2011-21 and the number of old people will increase from 3.62 million in 2001 to 8.93 million in 2051. This will record a hike of 166 percent. Moreover by 2061, the relative share of elderly would be 40 percent of the total population of Kerala (State Planning Board, 2009). With increase in longevity, the old age population is high in Kerala. The improved health networks and better medical care facilities function as contributory factors towards this tremendous growth. Hence the health issues specific to old people emerge as a burning issue to be dealt with utmost care.

2. Prevalence of Grey Population Grey population means old people. Due to the surge in the population of elderly in total population, Kerala population is termed as grey population. People above 60 constitute 13% of the state population in comparison with 8.2% of national figure (Census, 2011) and due to this uniqueness some observers have termed Kerala as ‘old’s own country’. The increased life expectancy coupled with prevalence and awareness of better health facilities and existence of social security measures in Kerala; naturally increase the rate of grey population. The ‘aged dependency ratio’ (the number of persons above 60 years of age per 100 persons in theworking age group of 15-59 years) is expected to increase from 17 to 76 during the span of 20012061(Centre for Development Studies, 2012). The old aged demands constant medical care because with increase in age, chances of curing the illness completely come down. Rather than recovery and curing, a holistic supportive mechanism is required.

3. Lifestyle diseases and chronic disability Even though Kerala has witnessed significant improvement in health sector comparable to advanced nations, fresh challenges are posing serious threats to the health sector. The outbreak of new diseases and mushrooming of lifestyle diseases together constitute chronic disability. According to the Human Development Report published by the Government of Kerala in 2005, the prevalence of disabilities in Kerala is lower than all India level but the state ranks second highest in terms of prevalence of chronic conditions. The Disability Census 2014-2015 reveals that 9.87 lakh households in Kerala have disabled people and this constitutes 11.01% of the total households. In all these instances constant palliative support is essential.

4. High Morbidity Rate One of the highlighting features of Kerala population is low mortality rate coupled with high morbidity rate. Morbidity refers to the ill feelings associated with physical and mental condition. It is an indication of ill-health of a person. Increased prevalence of lifestyle diseases along with cancer and other chronic situations put the morbidity status of Kerala at a gloomy level. The morbidity prevalence rate in state is estimated as 181 out of every thousand people in comparison with national average of 103(Gangadharan, 2016). It increases the average years of morbidity and the condition become worse with progress of ageing.

5. Nuclear Family System Besides the above health challenges, the transition in the family system also pose serious challenges in healthcare of people. With the transition into nuclear family system, the number of people in the families has drastically reduced. It seriously affects the quality of care to be extended to the patients. When someone in the family turns to be chronically disabled, it raises serious problems in providing continuous and regular care. This necessitates external institutional support and increases the potential of home care facilities. Emergence of Palliative Care Movement in Kerala Even though palliative movement of Kerala was pioneered as an exclusive medical model, it is the outcome of collective health consciousness of society. Since education and health were treated as the thrust areas of Kerala model1, the social consciousness had oriented in such a manner. Hence the elected governments have designed several innovative practices towards the growth of these areas including extensive public network of hospitals, primary health centers, concession in treatment for poor people etc. But the health sector of Kerala had confronted with some serious crises in the early 1980s with the increased incidence of non communicable and lifestyle diseases like diabetes, cancer, hypertension, heart diseases etc (Ekbal, 2017).

The decade of 1980s was marked by the migration of Keralites to gulf countries resulting out of the increased number of employment opportunities because of the oil price hike. The remittances from migration have increased the standard of living as well as the wealth distribution of people (Zachariah et al, 2003). Besides these unrivalled achievements, the phenomenon has resulted in certain matchless miseries also. Changes in food habits, lack of physical exercise and increased mental stress contributed to the spread of non communicable diseases. Interaction with external world and demonstration effect has resulted in unhealthy food habits. Increased intake of oil, processed food etc. increased the potential risk of lifestyle diseases (Ramankutty, 2000; Soman et al, 2010). Prior to 1980s Kerala society was primarily an agricultural economy marked by increased involvement in physical activity and laborious work (Oommen, 1999; Tharamangalam,

1

Kerala model is a unique development experience characterized by low level of economic development along with improved level of human development. This is achieved by heavy public investment in social as well as educational domains with stagnant productive sectors. The contribution of social reformers, missionaries, charitable organizations have helped to attain commendable social standards in health and education sectors.

2006; Ekbal, 2006). But the ‘gulf migration boom’ and mushrooming of service sector has reversed this trend. Gulf migration belongs to the category of ‘non- permanent resident-ship’ resulting in the separation from family. This isolation has increased the mental strain and related health problems to both the migrant and family members (Eappen, 2002)

Kerala tops Indian states in terms of life expectancy at birth (SRS, 2016) with 74. 9 years and morbidity rate(Navaneetham et al; 2009). So management of health becomes a grave issue. The onset of chronic diseases makes life a miserable one. Unfortunately Kerala holds very high prevalence of chronic diseases (Soman et al; 2010) which demands long term medical assistance and the survival rate is also low. The rationale for palliative care system here serves as a bridging gap between miseries and existence of life.

Paradigm shifts of Palliative Care Movement Following the initiatives from western and central India, Kerala started its first palliative unit in 1993 at Kozhikode Medical College in connection with the Institute of Palliative Medicine. It marked the launching of the hitherto unheard palliative movement in Kerala. As a result, the supportive system of medical care was also integrated with the traditional curing systems of health care. This can be considered as a paradigm shift in the health care model of the state. Later by 1999, four NGOs-Malappuram Initiative in Palliative care, Pain and palliative Care Society(Kozhikode), Alpha Palliative Care Clinic(Thrissur) and Justice Sivaraman Foundationtogether constituted a community initiative named ‘Neighbourhood Support inPalliative Care’ with the active involvement of volunteers. It paved way for community levelinitiatives in palliative movement. This move served as a positive pressure group to initiate official level activities in a tremendous way towards this segment. This is the pioneering paradigm shift in the palliative care movement of Kerala.

Adding momentum to these community initiatives, Government of Kerala framed an official policy - Pain and Palliative Care Policy - in 2008.Through this government declared palliative care as an integral component of primary health care and promoted community based home care under the initiative of local self governments. The National Rural Health Mission (NRHM) was also integrated into this project and Kerala is the only state with an NRHM project in palliative

care. The ‘Arogya Keralam’ project is an outcome of this commendable move. This government initiative in collaboration with local self governments really enhanced the coverage of this network. Starting from 400 panchayaths in 2008, now it spreads in the local bodies and extends the service in collaboration with primary health centres, student volunteers, local field staff etc. This extended official intervention marks the second phase of paradigm shift.

Kerala Model of Palliative Care Now the Kerala model of palliative care is promoted and supported by three different pillarsmedical intervention, government initiative and NGO support. The culmination of institutional and charitable initiatives helped to broaden the outreach of this network. The Kerala model of decentralized planning2 with commendable public involvement invarious dimensions acted as a watershed in spreading the palliative network at the grassroots level. With the help of local self government (LSG) institutions, palliative care units have made mandatory in all local bodies. The well appraised Kerala model having hefty focus on service sectors along with this decentralized initiative helped to dissimilate this concept into the local level. This initiative made 5% of the plan fund as mandatory for palliative care(Government of Kerala, 2015). Similar to the previous government initiatives like ‘total literacy campaign’ and ‘health insurance protection’3, palliative care programme was also popularized through the support of volunteers and grassroots level initiatives. For this state government has framed a palliative care policy in 2008 and became the first state in India in launching such an initiative. Under this institutional initiative several specific innovative projects namely ‘pariraksha’ (home care programme for bedridden patients),‘vayomithram’(free medicines for senior citizens above the age of 65 years), homecare (nursing assistance to chronic patients), SIPC( students in palliative care, extending the service of student volunteers in serving patients) etc.

2

Kerala model of decentralized planning is an effort to vest powers and financial resources with local self governments (LSG) organized at the village level. Local level activities are co-ordinated through this three tier system of governance. It ensures increased level of participation of local people in choice of development activities and prioritization of their development needs. 3 Total literacy campaign was a mass initiative undertaken in late 1980s in order to attain total literacy in the state by wiping out illiteracy by a co-0rdinated move of government and volunteers throughout the state and this helped to attain the status of highest literate state in India. Health insurance protection for low income people is another social welfare move designed to cover social protection to poor people by enabling them to meet increased health expenses.

Streams of Palliative Care Palliative care initiatives in Kerala can broadly be categorized into five sections. The first segment functions under the monitoring of government agencies as well as local self government institutions, and this official initiative makes use of ASHA (Accredited Social Health Activist) workers. National Rural Health Mission (NRHM) serves as the co-ordinator for this. Another major stream is run by registered charitable trusts, and this is the forerunner in the state with grass-root level initiatives in North Malabar regions through ‘neighbourhood network groups’ (Philip et al; 2018). These community based organisations (CBOs) are purely driven by volunteers.

In recent times, political and religious organisations also play a dominant role in this initiative. The third category is in association with hospitals and under the supervision of health care professionals. The chronic and incurable patients are provided with separate facilities and adequate emotional as well as mental support is offered to them. The service of counselors and psychologists are also provided to equip them to face the inevitable. Institute of Palliative Medicine located in Kozhikode is the beginner in this stream. Specialized home care initiative for supporting the bedridden patients is the fourth segment of the palliative initiative. Here besides a staff nurse, volunteers and field staff will also be included. Student volunteers also extend their service to this team. The fifth section is the inpatient- outpatient (IP-OP) care by utilizing the existing facilities in hospitals. Health professionals having expertise in palliative care extend their services by offering specialized OPs and domestic care to the needy chronic patients.

IPM: The Real Champion of Palliative Care Initiative in Kerala The Institute of Palliative Medicine located in Kozhikode is still the dominant player in palliative initiative of Kerala comprising inpatient care, outpatient care and home care services. It runs a 30 bedded inpatient clinic for the most severe patients. Along with this an Outpatient clinic also functions with a weekly enrolment of more than 250 patients. Utilising the service of student and medical volunteers and in collaboration with the Palliative Care India Society, it also undertakes a home care unit by offering palliative assistance at the doorstep for the enrolled patients in a round the clock (24x7) basis.

Besides the medical attention, it also offers rehabilitative measures to patients and supportive measures to family. The programme titled ‘footprints’ is a novel attempt to provide vocational training to the chronically disabled patients with the financial assistance of Ratan Tata Trust. The raw materials are provided through this initiative and the marketing is also done through the volunteers.

Through the activities of Palliative Care Patient Benefit Trust, it also offers educational aid to the students from disabled family. Travel allowance for the patients for availing outpatient service is also facilitated through this initiative. Through forming a broad network with educational institutions, it provides food kits to families of disabled either on a monthly or weekly basis. This initiative titled food for survival is a form of extension activity.

Besides serving as the technical advisor for Central and state Governments, IPM also serves as the collaborator of WHO in spreading this service across the world. Institute of Palliative Medicine in Kozhikode and Regional Cancer Centre in Thiruvananthapuram is conducting training programme for professionals. These unique training programmes offered for the medical professionals and student volunteers besides its initiative to tie in hand with international governments and medical institutions are aimed at equipping professionals with compassion and emotional quotient.

Innovative Practices and Offshoots of Kerala Model of Palliative Care The most highlighting features of the palliative care movement in Kerala is its grass root level coverage with a well connected network of local self governments, students and community initiatives and political parties. This makes it a unique pattern of healthcare. More than 80% of the palliative units in Kerala are run by non-governmental organizations. The enhanced level of community involvement and participation in palliative activities through neighborhood network make it something unique and cost effective. The extension of this network to educational institutions through innovative attempts like Our Responsibility to Children (ORC) and Students in Palliative Care (SIPC), ensures a quality base and continuation for the programme. Another commendable feature is that this movement has succeeded in making it a socially responsible

move to a significant extent. The incorporation of various cross sections of the society transfers it into a really democratic system. The movement has really succeeded in transforming the movement from a pure medical model to a socially responsible participatory system with the active involvement of democratic institutions and different cross sections of the society. The involvement of political as well as religious organizations has helped in widening the outreach and coverage of this novel model.

The model can be replicated in other regions through active monitoring of government and assuring of enhanced level of community involvement. Palliative care is not only a medical model but a welfare culture in health sector to be integrated and practiced in a regular basis. Neither government nor health activists alone can implement this practice successfully. Moreover, community involvement is an essential factor for its success. Instead of treating this as an isolated practice, more efforts are to be made in updating and popularizing this health practice.

Conclusion Palliative care is a vital domain which still needs to be encompassed into the health care system. It serves as a bridge between chronic morbidity and decent demise. Beyond the dimensions of cure and recovery, it concentrates on the emotional relaxation of the patients. The experience and lessons from this Kerala model should be publicized and promoted all over India considering the vast gap between need and achievement level. This paper can be concluded by quoting the opinion of Richard Smith, Editor, British Medical Journal “The Kerala model does provide a feasible way of achieving the vision of palliative care covering all patients, all diseases, all nations, all settings, and all dimensions. It’s hard to see how it will be achieved in another way”(Smith, 2011).

Anooja Chacko, Asst.

Professor,

Department

of

Economics,

Zamorin’s Guruvayurappan College, Calicut-14. Email: [email protected]

References 1. Irudayarajan, S(ed), 2012, ‘Kerala’s Demographic Future: issues and Policy Options, Centre for Development Studies, Thiruvananthapuram 2. Gangadharan, K (2016) “Kerala’s Health status: Some Issues”, paper presented at Kerala Science Congress, Kannur , 21 September 3. Government of India (2011), Population Census, NSSO, New Delhi 4. Government of India (2012) “Strategies for Palliative Care in India”, New Delhi 5. Government of Kerala (2008), “Palliative Care Policy for Kerala”, Thiruvananthapuram 6. Government

of

Kerala

(2018),

Economic

Review,State

Planning

Board,

Thiruvananthapuram 7. Government of Kerala (2015), “Arogya Keralam: Palliative Project in Kerala in Social Sector Service Delivery: Good Practices Service Book, Thiruvananthapuram 8. Government of Kerala (2015), Disability Census 2014-2015, Kerala Social Security Mission 9. Khosla et al (2012), “Palliative Care in India: Current Progress and Future NeedsIndian Journal of Palliative care”, Vol: 18, Issue: 13, pp 149-54 10. Sallnow Libby & Suresh Kumar (2008), “Work book of Second International Workshop onCommunity Participation in Palliative care: Home based care”, Institute of PalliativeMedicine; Kerala, pp. 7–35, 11. Shanmughasundaram S et al. (2006) “Development of Palliative Care in India”, International Journal of Nursing Practice ;12:241-6. 12. State Planning Board(2009), United Nations Development Programme Planning Commission Project, Thiruvananthapuram 13. The Institute of Palliative Medicine (IPM) (2013), “Models of Delivering Palliative and End-of-Life Care in India”, Current Opinion Support Palliative Care, 7:216-222. 14. Thayyil, J and Cherumanalil (2012), “Assessment of Status of Patients Receiving PalliativeHomecare and service Provided in a Rural Area-Kerala”, India, Vol: 18, Issue: 13, 213-18 15. Philip et al(2018),“Twenty years of home based palliative care in Malappuram: A descriptive Study of Patients and their caregivers”, BM Palliat Care 17:26

16. Ekbal, B (2017),“Kerala Model of Health: From Success to Crisis”, The New Indian Express, August 14 17. Zachariah et al (2003), “Dynamics of Migration in Kerala: Dimensions, Differentials and Consequences”, Orient Black -swan, London 18. Ramankutty, V(2000), “Historical Analysis of the Development of Health care Facilities in Kerala State, India”, Health Policy and Planning, Vol: 15, Issue 1 19. Soman et al (2010),“All- Cause Mortality and Cardiovascular Mortality in Kerala State of India: Results from a 5 year follow up of 161 942 Rural Community Dwelling Adults”, Asia Pacific Journal of Public Health XX(X) 1-8 20. Eappen, Mridul and Praveena Kodoth (2002), “Family Structure, Women’s Education and Work: re-examining the High Status of Women in Kerala”, Working Paer: 341, Cwntre for Development Studies, Thiruvananthapuram 21. Navaneetham et al(2009); “Morbidity Patterns in Kerala: Levels and Determinants”, Working Paper: 411, Centre for Development Studies, Thiruvananthapuram 22. Sample Registration System Statistical Report (2016), “Census of India”, Registrar General, New Delhi 23. Oommen, M A(ed) (1999), “Rethinking Development: Kerala’s Development Experience”, Concept Publishing Company, New Delhi 24. Thamaramangalam, J (ed) (2006), “Kerala: The Paradoxes of Public Action and Development”, Orient Longman Pvt Ltd., New Delhi 25. Ekbal, B(2006), “Kerala’s Health Sector: Crying for Cure”, Kerala Calling, May 37-31