Hospice and Palliative Care in Trivandrum, India

By Andrew Patzke


Imagine how you would feel if you were afflicted with a disease that you did not fully understand, the cost of your medical treatments had consumed all of your family’s resources, and you were suffering from immense pain that you could no longer afford to manage properly. Such are the circumstances of many of the patients that Pallium India serves. Pallium India is an NGO that seeks to provide the population of Trivandrum, India with access to hospice and palliative care. As a result, Pallium India is also giving its patients access to dignity and relief during an incomprehensibly difficult time.

Over the past three weeks, I have spent my winter break studying hospice and palliative care at Pallium India in Trivandrum, Kerala. This unique opportunity has afforded me the ability to learn about several different aspects of health care delivery in great detail that will greatly supplement the “normal” course work I have and will complete as a master of health administration and master of public health policy student at the University of Iowa.

I chose to spend my winter in India with goals of keeping my mind busy during the long break, experience health care in a different culture and learn more about hospice and palliative care. I have undoubtedly met those goals, as well many others.

Trivandrum

Trivandrum is about the size of the Chicago…with three times the population. The bustling, loud and chaotic hordes of people, rickshaws, cars, mopeds and bikes certainly overwhelmed me during my first few days in the city. However, with each day, I found Trivandrum to be more and more hospitable and alluring. As I prepare to leave, I am honestly quite saddened to have to leave a place that stimulates all of the five senses and return to the snow-covered plains of Iowa.

Our Hosts

Pallium India is truly an inspirational example of health care delivery. Surviving on the generosity of donors and volunteers, Pallium provides free hospice and palliative care treatment to some of the most desperate and impoverished people in the region. Usually working in teams of a physician and two nurses (there are also social workers and physiotherapists), Pallium’s providers load in to vans and embark on the time and energy consuming process of visiting patients’ homes and staffing outreach clinics 6 days a week. Once at a patient’s home, they will sit and talk to them – rarely spending less a half hour, and usually over an hour. A fantastic example of how compassion and health care can and should be intertwined.

Hospice and Palliative Care

A typical patient bed

Prior to this trip, my understanding of hospice and palliative care was largely based on textbook definitions. Nothing has been more valuable than the real-life examples of palliative medicine’s positive impact a patient and their family that I have been privy to. Pallium strives to meet the needs of their patients, which – apart from the medical treatment of their pain – is often focused on aspects of health care that are largely nonmedical. As an example, many of Pallium’s patients do not have access to bedding, wheelchairs or commodes. By supplying such items, Pallium can greatly improve the quality of life for their patients. Improving the quality of life for its patients is the bottom line for Pallium. They will do anything to help their patients, even if it does not fit into any definition of hospice or palliative medicine.

A Story

A prime example of the impact that Pallium has on its patients is the story of Lija. Lija was diagnosed with Rheumatoid Arthritis at a very young age. Her medical treatments resulted in massive debt for her family (health insurance here is about as common as pet elephants is in the US). Though potentially beneficial medical treatments were still available, her family could not afford further medical care.

Lija, who was sitting while she spoke
due to the continued pain in her legs

By the time Pallium India came to Lija, she had become completely bedridden. She was about 20 years old at the time. Determined to help in any way possible, Pallium invited the support of a local school to raise enough money for Lija to undergo surgery that had the potential to drastically improve her quality of life – but not cure her. Over the course of a year, the students and their teachers at the local school raised over $4,000 dollars (a huge amount in this part of the world) for Lija’s surgery. By that time, Lija had been bedridden for six years.     
       
I met Lija last week, when she walked into our classroom with her mother to tell us her story. She told us how her love of singing had kept her positive and hopeful during difficult times. Of course, we invited her to sing for us. As Lija sang, the sense of positivity that she exuded and the pride in the face of her mother were like nothing I had ever seen before in any person.

My time here in India has been an invaluable experience. Health care delivery in this part of the world is different from anything that I have ever experienced while studying in the US, Europe and working in Japan. The compassion demonstrated by the caregivers at Pallium is – I am confident – without rival in any other health care organization. This has truly changed my perspective on the health care field, and has changed me as a person. I cannot thank the University of Iowa, Dr. Joann Eland and the people at Pallium India enough for this experience.

You can see additional photos from Andrew’s on his blog.