The tourism industry’s projection of Kerala as "God’s own country" may at least be true in the case of dying people.
An 80-country "Quality of Death" study conducted by the Economist Intelligence Unit finds Kerala as the best place in India to die, even though the country as a whole is placed at a dismal 67th position.
The study commissioned by Lien Foundation, a Singapore-based philanthropic organisation, found Kerala the lonely beacon of hope in the entire country because of its community-based models of palliative care.
“With its long history of socialist politics and strong religious institutions, the Indian state is uniquely suited to such models,” says the study report.
The United Kingdom tops the index on account of its comprehensive national policies, extensive integration of palliative care into the country’s National Health Service, a strong hospice movement as well as deep community engagement.
Neighbourhood networks
Though the number of people requiring end-of-life care in India is rising steadily following spread of diseases like cancer, diabetes, and AIDS, only about 1% of the 1.2 billion-population has access to end-of-life care, according to Dr Rajgopal, Director of the World Health Organisation Collaborating Centre for Policy and Training on Access to Pain Relief and the Founder-Chairman of Pallium India.
Kerala, on the other hand, has a palliative coverage of over 50% of the population. As in UK, Kerala is following a community-led model that seeks to empower local communities to look after the chronically ill and dying patients in that community by providing training to local volunteers.
The volunteers are trained to identify problems of the chronically ill in their area and to care for them with support from a network of trained professionals. The project is being implemented under Neighbourhood Network in Palliative Care with the support of local bodies, non-government organisations, government agencies and even political parties.
The Neighbourhood Network operates in all 14 districts of Kerala through 230 clinics. The network consists of over 100 full-time doctors, 300 staff nurses, 400 auxiliary nurses, and more than 15,000 trained volunteers. Over 60% of the patients are below the poverty line and 55% of the patients are women.
Care is mostly provided at home through house visits by nurses, doctors or volunteers. In-patient facilities are available at the Institute of Palliative Medicine at Kozhikode and some hospices run by NGOs and out-patient services are run at local clinics for those able to attend.
A paradigm shift in palliative care was witnessed after the state government came out with a palliative care policy, the first in India, in 2008 providing for primary palliative care under each local body. This has taken the number of primary care units to 1,000.
They take care of bedridden patients, struggling with various afflictions, but mainly cancer or heart trouble and strokes. According to studies, 14 out of 1,000 persons in Kerala are in the need of palliative care. Half of them are accident victims and the remaining suffer from various life-threatening diseases like cancer.
The neighbourhood network's aims to develop a sustainable service capable of offering comprehensive long-term care that includes psychological, spiritual and bereavement care to the needy as per the services defined by the World Health Organization.
Beyond health
Some NGOs even go beyond the WHO definition and try to rehabilitate the families of the sick person. Thrissur-based Alpha Palliative Care, run by a charitable trust established by a Gulf-based non-resident Indian, tries to relieve not only the patients but also their families from other worries in life like children’s education, marriage, housing, employment too. It has launched a rehabilitation programme called "Alpha Sakti" to deal with these problems. The trust has organised marriages of daughters of 54 patients under its care by providing each of them 40 grams of gold and Rs 50, 000 in cash. Under the employment scheme, Alpha tries as far as possible to employ the dependents of the patients in the trust itself.
KM Noorudeen, chairman of Alpha Pain Clinic, said their approach was to bring the patient back to life as far as possible. A 68-year-old woman who was brought to the Alpha Hospice in Thrissur following a debilitating stroke 10 years ago was made functional after six months of treatment.
“When Khadeeja was brought to the hospice, she could not perform any task without help. She was able to move after several months of treatment at the clinic but did not have the motivation to do things on her own. We realised the mental trauma she faced following the tragic deaths of her near and dear ones, especially her husband and sister, and helped her regain her confidence and zeal for life. And this has done wonders”, said Savithri, the hospice in-charge.
Savithri said the transformation in her was noticed after they recognised her talent in singing and encouraged it. She is now a regular singer at all functions in the hospice. Her songs also apparently have a therapeutic effect on other inmates in the hospice.
Several others like Khadeeja, who have been battling various diseases and disabilities alone, have found a new lease of life at Alpha hospice. Apart from these, hundreds of others with chronic and incurable diseases are taken care of by the Alpha Pain and Palliative Clinic at their homes, said Noorudeen.
Though Kerala has high penetration of palliative care facilities compared to the rest of the country, many patients with chronic diseases continue to suffer pain in their end stages. Noorudeen attributed this to shortage of trained personnel and lack of clinical facilities.
Even though the state has more than 1,000 palliative care centres, very few of them have 24-hour service. This means palliative care will not be available when the patient needs it.
Dr Rajagopal, who is also the founder of the Pain and Palliative Care Society in Kozhikode that fuelled palliative care as a social movement in the state, dismisses this as teething troubles. He said that whatever has been done by Kerala so far was a strong foundation for a comprehensive palliative care covering the entire population.
Demographic transition
The need for palliative care is huge in Kerala as the demographic transition has resulted in a sharp rise in the aged population. On the other hand, high migration has left the elderly grappling with multiple diseases lonely.
About 12.6% of the state’s total population of around 3.3 crore is aged above 60 years as per the 2011 census. A recent study by the Centre for Development Studies showed that the elderly population is growing at a perpetual rate of 2.3%. The growth rate is high among the elderly aged 70 or 80 and above.
If this trend continues uninterrupted, the elderly population is expected to overtake the proportion of young and old in between 2021 and 2031, the study says. The state has been adding one million elderly every year since 1981. Females outnumber males among elderly.
Diabetes mellitus, cardiovascular diseases, respiratory disorders, hearing and visual impairments, depression, and infections are common problems faced by the elderly in the state. About 6% of the nearly 30 lakh elderly lead lonely lives mostly due to migration.
Rajgopal feels that the state will have to expand the palliative care to take care of the elderly, who are battling with multiple diseases.
An 80-country "Quality of Death" study conducted by the Economist Intelligence Unit finds Kerala as the best place in India to die, even though the country as a whole is placed at a dismal 67th position.
The study commissioned by Lien Foundation, a Singapore-based philanthropic organisation, found Kerala the lonely beacon of hope in the entire country because of its community-based models of palliative care.
“With its long history of socialist politics and strong religious institutions, the Indian state is uniquely suited to such models,” says the study report.
The United Kingdom tops the index on account of its comprehensive national policies, extensive integration of palliative care into the country’s National Health Service, a strong hospice movement as well as deep community engagement.
Neighbourhood networks
Though the number of people requiring end-of-life care in India is rising steadily following spread of diseases like cancer, diabetes, and AIDS, only about 1% of the 1.2 billion-population has access to end-of-life care, according to Dr Rajgopal, Director of the World Health Organisation Collaborating Centre for Policy and Training on Access to Pain Relief and the Founder-Chairman of Pallium India.
Kerala, on the other hand, has a palliative coverage of over 50% of the population. As in UK, Kerala is following a community-led model that seeks to empower local communities to look after the chronically ill and dying patients in that community by providing training to local volunteers.
The volunteers are trained to identify problems of the chronically ill in their area and to care for them with support from a network of trained professionals. The project is being implemented under Neighbourhood Network in Palliative Care with the support of local bodies, non-government organisations, government agencies and even political parties.
The Neighbourhood Network operates in all 14 districts of Kerala through 230 clinics. The network consists of over 100 full-time doctors, 300 staff nurses, 400 auxiliary nurses, and more than 15,000 trained volunteers. Over 60% of the patients are below the poverty line and 55% of the patients are women.
Care is mostly provided at home through house visits by nurses, doctors or volunteers. In-patient facilities are available at the Institute of Palliative Medicine at Kozhikode and some hospices run by NGOs and out-patient services are run at local clinics for those able to attend.
A paradigm shift in palliative care was witnessed after the state government came out with a palliative care policy, the first in India, in 2008 providing for primary palliative care under each local body. This has taken the number of primary care units to 1,000.
They take care of bedridden patients, struggling with various afflictions, but mainly cancer or heart trouble and strokes. According to studies, 14 out of 1,000 persons in Kerala are in the need of palliative care. Half of them are accident victims and the remaining suffer from various life-threatening diseases like cancer.
The neighbourhood network's aims to develop a sustainable service capable of offering comprehensive long-term care that includes psychological, spiritual and bereavement care to the needy as per the services defined by the World Health Organization.
Beyond health
Some NGOs even go beyond the WHO definition and try to rehabilitate the families of the sick person. Thrissur-based Alpha Palliative Care, run by a charitable trust established by a Gulf-based non-resident Indian, tries to relieve not only the patients but also their families from other worries in life like children’s education, marriage, housing, employment too. It has launched a rehabilitation programme called "Alpha Sakti" to deal with these problems. The trust has organised marriages of daughters of 54 patients under its care by providing each of them 40 grams of gold and Rs 50, 000 in cash. Under the employment scheme, Alpha tries as far as possible to employ the dependents of the patients in the trust itself.
KM Noorudeen, chairman of Alpha Pain Clinic, said their approach was to bring the patient back to life as far as possible. A 68-year-old woman who was brought to the Alpha Hospice in Thrissur following a debilitating stroke 10 years ago was made functional after six months of treatment.
“When Khadeeja was brought to the hospice, she could not perform any task without help. She was able to move after several months of treatment at the clinic but did not have the motivation to do things on her own. We realised the mental trauma she faced following the tragic deaths of her near and dear ones, especially her husband and sister, and helped her regain her confidence and zeal for life. And this has done wonders”, said Savithri, the hospice in-charge.
Savithri said the transformation in her was noticed after they recognised her talent in singing and encouraged it. She is now a regular singer at all functions in the hospice. Her songs also apparently have a therapeutic effect on other inmates in the hospice.
Several others like Khadeeja, who have been battling various diseases and disabilities alone, have found a new lease of life at Alpha hospice. Apart from these, hundreds of others with chronic and incurable diseases are taken care of by the Alpha Pain and Palliative Clinic at their homes, said Noorudeen.
Though Kerala has high penetration of palliative care facilities compared to the rest of the country, many patients with chronic diseases continue to suffer pain in their end stages. Noorudeen attributed this to shortage of trained personnel and lack of clinical facilities.
Even though the state has more than 1,000 palliative care centres, very few of them have 24-hour service. This means palliative care will not be available when the patient needs it.
Dr Rajagopal, who is also the founder of the Pain and Palliative Care Society in Kozhikode that fuelled palliative care as a social movement in the state, dismisses this as teething troubles. He said that whatever has been done by Kerala so far was a strong foundation for a comprehensive palliative care covering the entire population.
Demographic transition
The need for palliative care is huge in Kerala as the demographic transition has resulted in a sharp rise in the aged population. On the other hand, high migration has left the elderly grappling with multiple diseases lonely.
About 12.6% of the state’s total population of around 3.3 crore is aged above 60 years as per the 2011 census. A recent study by the Centre for Development Studies showed that the elderly population is growing at a perpetual rate of 2.3%. The growth rate is high among the elderly aged 70 or 80 and above.
If this trend continues uninterrupted, the elderly population is expected to overtake the proportion of young and old in between 2021 and 2031, the study says. The state has been adding one million elderly every year since 1981. Females outnumber males among elderly.
Diabetes mellitus, cardiovascular diseases, respiratory disorders, hearing and visual impairments, depression, and infections are common problems faced by the elderly in the state. About 6% of the nearly 30 lakh elderly lead lonely lives mostly due to migration.
Rajgopal feels that the state will have to expand the palliative care to take care of the elderly, who are battling with multiple diseases.
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