Putting life in lifeless days by providing care beyond cure - Pallium India
The medical services in India, despite phenomenal advances in medicine and technology, regularly fails at its most fundamental job which is to provide care & relief to the patient irrespective of what the individual is going through. “Pain”, as popularly understood by the masses, is much more than how it is perceived to be just physical. Pain is more spiritual, social and emotional at its core and if this pain is addressed appropriately, the treatment helps provide solution to half the physical trauma that a patient goes through.
Not very familiar with the people in our country, 'Palliative care' is an aspect of care in medical services, where the focus is on improving the quality of life of the patients with life-limiting or disabling diseases by providing emotional, social & spiritual support in addition to treating the actual disease.
The Indian healthcare scene saw a revolutionary phase spearheaded by Dr. M.R Rajagopal, who established Pallium India to catalyze the development of effective pain relief and quality palliative care services, along with their integration in healthcare across India - through education, capacity building, policy research, advocacy and information.
"Have you ever wondered what your death would be like? Or have you ever thought of the day when your body would be wired in many life saving instruments, behind a glass door and your only wish would be to see and feel your family and friends, but you will be denied that one last chance, one last wish. If not, then start thinking about how your last days would be like, choose while you can!", Dr. Rajagopal tells us. "We choose to hear the cry of the patients and do what we can", he says.
Pallium India Trust, a non-profit organization was formed in 2003 and since it's inception, has been working with one vision of making effective pain relief & quality palliative care services across the continuum of care accessible to each person. For Pallium India, patient is at the primary focus. "Sometimes, patients are suffering through a physical disease with it's cure hidden in their emotional self. It is at this point that the patient requires not just medical support but a holistic humane support and we at Pallium India try to do that. We support them in times when thoughts such as, 'Why me?', 'What will my family do?', 'Who will support my child's education?', 'My life is worthless, everyone has deserted me!' haunt them", says Sumitha T.S., who works as a Project Executive for Pallium India.
Ashla Rani, an erstwhile patient at Pallium India, talks about her experience as a receiver and now a provider of Palliative care:
Compassionate and competent care valuing human dignity is at the very heart of Pallium India. They believe that care is the right of every patient and their family & and they stand committed to providing it. A very motivated and high spirited team of Palliative doctors and other volunteers (non medicine background), with their efforts have brought remarkable changes not just in the hospitals but in the country and specially in state of Kerala by facilitating policy changes and amendments in medical laws.
Compassionate and competent care valuing human dignity is at the very heart of Pallium India
To mention a few, Pallium India initiated & followed up on a proposal that resulted in the declaration of a "Palliative Care Policy" by the Government of Kerala, making it the first ever government in a developing country to have such a policy. Pallium India also engaged in international advocacy and made possible amendments in Narcotic Drugs and Psychotropic Substances act that made possible medicinal use of essential narcotic drug like Morphine for pain relief.
Programmes at Pallium India
Currently, Pallium India is working in state of Trivandrum, Kerala in collaboration with WHO as a 'Centre for training and policy on access to pain and relief' and has spread across various cities in India through partnering with many government and private hospitals and also by facilitating policy change. As of today, they have catalyzed the development of palliative centers in ten states across India.
Delivery of Palliative care services is done through various means to cater to the different needs of the patients that aim at fulfilling their mental, social, physical and spiritual well being.
Volunteer Training: Pallium India's volunteers preparing to give aid to those in need
Community Based Palliative Care
Pallium India recognizes the strength of social capital and how a partnership with the community can contribute to the cause better. This is done by leveraging the support of volunteers and other community members so as to build the capacity to meet community needs.
Pallium India provides home visits to its patients through a support team consisting of a doctor, a nurse and a palliative assistant. Four teams visit the houses of patients in & around the borders of Trivandrum district for five days in a week and on every sixth day of the week, these teams sit & discuss their work and further strategize to come up with action items so as to work more effectively & efficiently.
Paraplegic patients & families of patients are given skill training that helps them earn their living. As of today, a number of items like umbrellas, paintings, quirky show pieces, bags, etc. have been made by the rehabilitated patients & their family members, which has, in turn, helped them uplift their financial status and live life with dignity.
Kuttikkoottam is an educational support program for children of patients run by Pallium India to help them maintain stability at mental & emotional level and to prepare them better for the future by assisting them in their lives.
Under this program, a bereavement support group is formed, that comprises the family members of patients who are no more living in this tangible world. This group meets at regular intervals to share their emotions, of how they are coping up with the situation and their experiences with palliative care services. This platform helps them to vent out all that is inside, be with people who share similar emotions and share the happiness that this journey has helped them achieve.
The most important program that Pallium India runs is a Food Kit support. A doctor often prescribes medicines to the patients with appropriate dosages based on their meal cycle. But seldom do the doctors ask the patients whether they actually have food to eat at home. On asking this to the patients, Palliative care doctors realized that a food kit is essential for the needy and hence they accordingly come up with monthly food kits that contain all the essential food items sufficient for a patient to sustain well for a period of one month.
The Project stands to train doctors and nurses in palliative care for six weeks, and once they go back to their own home town or the space they work in, they are on their own to fight a thousand barriers, with negligible support.
The aim of this program is to initiate palliative care in medical institutions that agree to make palliative care an institutional priority. The program provides limited financial support, training of professionals and offer technical support to the selected institutions.
A glimpse of a patient get-together organised by Pallium India in Trivandrum
Pallium India aims to sustain their current work by sharing all of their experiences and imparting knowledge gathered through their experiences over the years in this field of care to everyone out there, especially to doctors. They aim to do this by bringing considerable change in medicine curriculum to make 'care beyond cure' possible in it's truest sense.
Pallium India plans to strengthen their home care visit system through setting up various new linking centers in Kerala, and they foresee a future with replicated models of Pallium India working to make change happen across the democratic republic of India.
How can you contribute?
Pallium India conducts various certificate courses in pain and palliative care for volunteers, social workers, doctors and nurses in various cities like Hyderabad, Ahmedabad, Jaipur and Trivandrum to enable participants to gain practical hands-on training in palliative care delivery supplemented with theoretical knowledge.
You can check out various certificate courses here:
If you wish to apply for scholarship opportunities, please visit:
For career opportunities, check this out:
If you wish to donate, please head over to this link:
For any queries/questions, you can reach out to Pallium India here: Email Address: firstname.lastname@example.org
Website: www.palliumindia.org Facebook: www.facebook.com/palliumindia Twitter: www.twitter.com/palliumindia Head Office Address: Trivandrum Institute of Palliative Sciences (TIPS), Pallium India Arumana Hospital Building, Airport Road, Subash Nagar, Vallakadavu P.O Thiruvananthapuram – 695 008 - Kerala, India.
If you like this story, do share and spread the word. More stories to follow! :)
Pictures courtesy: www.palliumindia.org