Introduction
In my previous post on 'Living Will in India', I had briefly touched upon the concept of palliative care, and its relevance for meaningful execution of a living will. However, to many readers, the concept of palliative care was somewhat unfamiliar and some even requested that I should write a more comprehensive post on the subject for a better understanding and appreciation of the concept.
What is Palliative Care
The goal of palliative care is to improve the quality of life of persons with serious illnesses and their families, by responding to physical pain, other distressing physical symptoms as well as by providing nursing care, psycho-social and spiritual support. A serious illness affects more than just the body. It affects all areas of a person's life, as well as the lives of his/her family members. This is why palliative care would best be administered by an inter-disciplinary, multi-dimensional team comprising doctors, nurses, counselors, social workers and volunteers. Palliative care specialists take care of people with many disease types and chronic illnesses, including cancer, cardiac diseases, kidney failure, Alzheimer's, Parkinson's and many more. Palliative care can be given along with treatments meant to cure or treat the disease. It may be given when the illness is diagnosed, throughout the treatment , during follow-up and towards the end of life.
Palliative Care in India
It is estimated that in India, the total number of people who need palliative care is likely to be 5.4 million a year. Kerala has been the pioneer for offering excellent palliative care in India. The government of Kerala has, through formal policies, facilitated the provision of palliative care through the public health system. The state now has around 1550 palliative care units, 450 of which are run by community based organisations and NGOs.
Kozhikode is where it all started in 1993, when doctors at the Govt. Medical College led by Dr. M.R. Rajagopal and Dr. Suresh Kumar founded the Pain and Palliative Care Society (PPCS) which now runs the Institute of Palliative Medicine in the city. Starting out with focus on cancer, it was recognised by the WHO in 1995, and has expanded its scope over time. But the real turning point came in 1999-2000 when they started Neighbourhood Networks in Palliative Care (NNPC) - an approach that emphasised local, community based care, rather than an institutional , hospital-based approach led by doctors. Since 2000, the NNPC has trained volunteers from the local community to identify problems of the chronically ill in their area and to intervene effectively, with active support from a network of trained professionals.
A palliative care institution undertakes three basic programmes: Out-Patient clinic, Home Care and In-Patient clinic/ Hospice care. Initially, the patient is registered at the out-patient clinics, and depending on the location, he/she is linked with the home-care services. Home based palliative care services are becoming increasingly popular, with care being taken to the door-step of the patient. Ideally, this is where people are most comfortable at the end of their lives, surrounded by their loved ones. It is also one of the few ways that patients in rural areas, where healthcare facilities are inadequate, can access palliative care. Out- patient services facilitate all aspects of palliative care for patients and their families , while hospice care is recommended for the management of difficult symptoms requiring expert management and end of life (terminal stage ) management.
Services offered by out-patient clinics and professional home care units include medical support in the form of consultations, providing medicines and undertaking minor procedures such as wound care. NNPC groups also offer emotional support to patients, food for needy patients and their families, educational support to their children, transportation to the hospital when required and social rehabilitation programmes, in addition to the medical and nursing services. By placing emphasis on community based and home care services, palliative care can reduce the costs associated with emergency hospitalisation and prolonged hospital stays.
Pain relief is a very important component of palliative care, especially in the treatment of cancer. The availability of morphine, a scheduled drug essential for pain management in serious cases, used to be a challenge in providing meaningful palliative care services in India. Due to earlier stringent regulations, the availability of morphine was severely restricted across the country, subject to rules laid down by the Narcotics, Drugs and Psychotropic Substances Act of 1985. Following an amendment to the Act in 2014, morphine and similar opioid pain medications are now made available for clinical use by licensed practitioners providing much needed relief to suffering patients.
Conclusion
Only 2% of the population who need palliative care in India have access to it, far below the global average of 14%. The dismal state of palliative care in India makes the country one of the worst places to die in. The Economist Intelligence Unit's (EIU's) Quality of Death Index 2015 places India at the 67th position among the 80 countries that were surveyed, behind countries like Kenya, Peru and Ecuador.While Kerala, and in recent years, other southern states such as Karnataka, have made substantial progress in the field of palliative care, much remains to be done elsewhere in the country.
In my previous post on 'Living Will in India', I had briefly touched upon the concept of palliative care, and its relevance for meaningful execution of a living will. However, to many readers, the concept of palliative care was somewhat unfamiliar and some even requested that I should write a more comprehensive post on the subject for a better understanding and appreciation of the concept.
What is Palliative Care
The goal of palliative care is to improve the quality of life of persons with serious illnesses and their families, by responding to physical pain, other distressing physical symptoms as well as by providing nursing care, psycho-social and spiritual support. A serious illness affects more than just the body. It affects all areas of a person's life, as well as the lives of his/her family members. This is why palliative care would best be administered by an inter-disciplinary, multi-dimensional team comprising doctors, nurses, counselors, social workers and volunteers. Palliative care specialists take care of people with many disease types and chronic illnesses, including cancer, cardiac diseases, kidney failure, Alzheimer's, Parkinson's and many more. Palliative care can be given along with treatments meant to cure or treat the disease. It may be given when the illness is diagnosed, throughout the treatment , during follow-up and towards the end of life.
Palliative Care in India
It is estimated that in India, the total number of people who need palliative care is likely to be 5.4 million a year. Kerala has been the pioneer for offering excellent palliative care in India. The government of Kerala has, through formal policies, facilitated the provision of palliative care through the public health system. The state now has around 1550 palliative care units, 450 of which are run by community based organisations and NGOs.
Kozhikode is where it all started in 1993, when doctors at the Govt. Medical College led by Dr. M.R. Rajagopal and Dr. Suresh Kumar founded the Pain and Palliative Care Society (PPCS) which now runs the Institute of Palliative Medicine in the city. Starting out with focus on cancer, it was recognised by the WHO in 1995, and has expanded its scope over time. But the real turning point came in 1999-2000 when they started Neighbourhood Networks in Palliative Care (NNPC) - an approach that emphasised local, community based care, rather than an institutional , hospital-based approach led by doctors. Since 2000, the NNPC has trained volunteers from the local community to identify problems of the chronically ill in their area and to intervene effectively, with active support from a network of trained professionals.
A palliative care institution undertakes three basic programmes: Out-Patient clinic, Home Care and In-Patient clinic/ Hospice care. Initially, the patient is registered at the out-patient clinics, and depending on the location, he/she is linked with the home-care services. Home based palliative care services are becoming increasingly popular, with care being taken to the door-step of the patient. Ideally, this is where people are most comfortable at the end of their lives, surrounded by their loved ones. It is also one of the few ways that patients in rural areas, where healthcare facilities are inadequate, can access palliative care. Out- patient services facilitate all aspects of palliative care for patients and their families , while hospice care is recommended for the management of difficult symptoms requiring expert management and end of life (terminal stage ) management.
Services offered by out-patient clinics and professional home care units include medical support in the form of consultations, providing medicines and undertaking minor procedures such as wound care. NNPC groups also offer emotional support to patients, food for needy patients and their families, educational support to their children, transportation to the hospital when required and social rehabilitation programmes, in addition to the medical and nursing services. By placing emphasis on community based and home care services, palliative care can reduce the costs associated with emergency hospitalisation and prolonged hospital stays.
Pain relief is a very important component of palliative care, especially in the treatment of cancer. The availability of morphine, a scheduled drug essential for pain management in serious cases, used to be a challenge in providing meaningful palliative care services in India. Due to earlier stringent regulations, the availability of morphine was severely restricted across the country, subject to rules laid down by the Narcotics, Drugs and Psychotropic Substances Act of 1985. Following an amendment to the Act in 2014, morphine and similar opioid pain medications are now made available for clinical use by licensed practitioners providing much needed relief to suffering patients.
Conclusion
Only 2% of the population who need palliative care in India have access to it, far below the global average of 14%. The dismal state of palliative care in India makes the country one of the worst places to die in. The Economist Intelligence Unit's (EIU's) Quality of Death Index 2015 places India at the 67th position among the 80 countries that were surveyed, behind countries like Kenya, Peru and Ecuador.While Kerala, and in recent years, other southern states such as Karnataka, have made substantial progress in the field of palliative care, much remains to be done elsewhere in the country.
An informative article on a much needed area. I wish this was available to me a few years back when my family was struggling with three cancer patients one after another and we had no idea where to go for help. Thank you Valsala.
ReplyDeleteGod bless. Should be useful to many. Should be widely circulated.Alas only yesterday I read an article on how lowly we rank in the quality of place to to live in and in the happiness index. Now you say we rate no better in the quality if dting index. Jai ho.
ReplyDeleteVery informative. Many seniors are confined to wheel chairs or bedridden.They have to live totally dependent. Most of them get into depression & on to dementia.
ReplyDeleteMental health build up is the need of the day.This area may also be covered in the blog write up.
Thank you for your feedback. I will try and follow up on it.
DeleteThis info is very much required . Palliative care is very stressful I'm glad Kerala is doing so much hopefully other states will follow
ReplyDelete