What does palliative care mean in India?
Like in most low-income or lower middle-income countries, the need for palliative care is greater in India than in the west simply because disease-specific treatment does not reach patients adequately or early enough.
We follow the same definition of palliative care as outlined by the WHO. But in our context, the phrase “life-threatening” is to be used keeping in mind life in the broader sense of the term and not just existence.
This means that we include many “life-limiting” diseases like paraplegia that we believe threaten life by limiting it to within 4 walls. In the West, there is a parallel care system that takes care of people with such conditions, and provides physical, social, mental and spiritual support in the home setting; we do not have such a system. We bring them into the fold of Palliative Care.
At Pallium India, who comes into your system?
Part of this question has been answered in the preceding paragraph. We see people with all manner of advanced and chronic illnesses – malignant disease, auto-immune conditions, neurological disease, children born with congenital anomalies, children with chronic kidney disease, patients with mental health challenges and a host of other conditions. In the year 2015-2016, we worked with approximately 8,000 families in the Trivandrum district alone.
Who pays for the services?
In Kerala, to a large extent it is the community that supports non-government organisations. To a growing extent, the state government. A small minority (15 persons or less in Pallium India) pay for the services. A beginning has been made by the government of India to develop and pay for such services, but we are still in very nascent stages. It is pertinent to note here, that Kerala is leagues ahead of the rest of the country in terms of palliative care services and policy. It cannot be seen as a yardstick to measure the rest of the country by.
WHAT gets missed?
The available services in most of the country are of unacceptably low quality, most of them failing to satisfy even the minimum essential standards.
(See “Creation of minimum standard tool for palliative care in India and self-evaluation of palliative care programs using it”, Indian Journal of Palliative Care, 2014;20:3; 201-7.)
Psychosocial issues take a backseat in a big way. Spiritual issues and sexuality issues are almost completely unaddressed.
Who gets missed?
- 99% of the population that needs palliative care are missed.
- Among the remaining 1% population that do have some palliative care access, the following groups are further marginalised:
- Women – even in the state of Kerala where services are far more accessible than in the rest of the country, men access palliative care more than women.
- The elderly living alone. An India population study in 2014 showed that in Kerala alone, around 1,70,000 people above the age of 60 live alone in single person households. Of these nearly 1,43,000 are women.
- Geographically remote/ isolated communities
- Prisoners and their families
- People with mental health conditions
- People with disabilities
- People with stigmatising diseases like HIV, leprosy
- Sex workers
- LGBTQ communities
- Migrant populations
- People with addictions
- Tribal populations
- People with Communicable diseases like HIV, Multiple drug resistant tuberculosis
- People with chronic pain
- People with other drug dependence
- People in humanitarian crisis and natural disasters
- Paradoxically, the rich. The affluent go to corporate hospitals, most of which have no pain relief programs, no medicines like morphine, which are in the essential medicines list of Government of India or palliative care. Instead they get cruel, inappropriate end of life care and isolation from the family in intensive care units.
|What Palliative care is not:||What Palliative Care is:|
|NOT restricted to end of life|
Care that can be given at the time of diagnosis of a serious illness, in order to minimise illness- related suffering-for the patient as well as the family.
|NOT only for terminally ill patients|
|NOT only for cancer patients|
Concerned with a vast spectrum of life-limiting conditions.
|NOT the last option when there is no more hope|
A means to provide realistic hope for life with minimal suffering, the restoration of dignity and when the time comes, for a death free of pain.
|Does NOT mean giving up|
Re-engaging with life even through illness.
|NOT the same as euthanasia||The viable and humane alternative to euthanasia in the vast majority of instances. We believe that people ask for Euthanasia because they find their suffering to be unbearable. Through palliative care, we can greatly reduce the suffering and thereby reduce the number of people seeking to end their lives.|