Palliative Care in India: The Basics

After our initial explorations, it was time to start focusing on the real purpose of our trip to the state of Kerala: Palliative Medicine. We had a few days of classroom time with our University of Iowa professors, Dr. Joann Eland and Dr. Ann Broderick, as well as Dr. Raj and other members of the Pallium India team. I will outline the basics of my notes that I took during these sessions below to reflect on my thoughts, as well as to help you understand the context of my journey in India.

What is Palliative Care?

• Palliative care is 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 relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.

What is Pallium India?

• Pallium India is a national registered charitable trust formed to fulfill the need for a stable organization working at a national level to fight for the needs of the suffering millions in India who are in need of pain relief and palliative care. 
• Pallium India provides palliative care to patients in need in their hospital facility and by doing home visits to patients in the community, as well as providing medication, medical equipment, and other resources to poverty-stricken patients and their families.
• Pallium India is an advocate to the Indian government for access to pain medication and healthcare services for the people of India.

My Personal Expectations for this Course:

• Learn about the Indian culture and the differences between it and that in the United States and how to respect other cultures while learning about them
• Observe the differences in palliative care and hospice care here and in the United States 
• Become more comfortable with the concept of death and managing the pain and suffering that precedes death
• Expand my comfort zone and my understanding of my first world privilege and the things that are good and bad about our approach to life and death and everything in between in the United States
• Learn more about the holistic approach to caring for patients, including both psychosocial and spiritual care as well as physical care
• Observe the vastly different cultures within India and the city of Trivandrum and understand that there is no one single cumulative Indian culture of India
• Gain skills, perspective, and knowledge that will contribute to my excellence in the practice of nursing and healthcare in general

Healthcare in India

• 80% of people in the state of Kerala have to pay out of pocket for their healthcare
• As many as one third of the poor have become poor due to the cost of healthcare treatment alone
• Less than 2% of the people in India have access to pain medication
• Pain is rarely seen as a problem by a healthcare professional when treating a patient

Family-Doctor Collusion in Indian Healthcare

• In the United States, we strictly adhere to the concept of patient autonomy, meaning that the patient has total control of what information about their healthcare is disclosed to which people, and has the right to know all of their own healthcare information. 
• In India, this is not the case. The family unit is held to a higher power than the individual here, in that the family will make the medical decisions and control the access to information of the patient.
• For example, if a patient was diagnosed with cancer, the medical professional would often inform the family of the patient before informing the patient themselves. In some cases, the family may wish to not disclose the diagnosis of cancer to the patient, in which case the medical professional would often abide by the family's wishes and keep the cancer diagnosis a secret from the patient. While this desire of the family come from a place of love in that they do not want their loved one to be burdened by the weight of this serious diagnosis, it raises serious questions of morality and patient rights among those of us from a western healthcare system.
• Keeping this in mind, we learned strategies that we can use as healthcare professionals when dealing with this dynamic of healthcare in India to ensure that the family's trust is not betrayed, but also that the patient has access to their own information to the degree to which they desire.