How India Fails To Care For Its Terminally Ill Patients And Their Families

Posted on September 20, 2016 in Health and Life

By Mekhala Dave:

Walking into a hospital has never been stress-free. There is a repertoire of people, gushing in and out, with grim and soul-numbing faces. 70% of the patients are devoured with life-threatening diseases, incurable and agonising. Most of them are at advanced stages, proximity to the precipice of life’s departure is nearer.

How long will they survive is a bearing inquiry, like many, I have often deliberated for loved ones. There are no answers conclusively and days, as numbers, begin to decline to the mortality of facts. The disease spreads within every crumb of the patient’s mental and physical sanity. Out of 70% of the patients, only less than 4% receive treatment for their immeasurable pain.

Life threatening diseases are not a personal experience as patients are attached to families and hinge on the support of the health care system. But patients march an ensuing battle with the fallacies and inconsistencies of the system. Tactics of consumerism is even more ubiquitous, today, fogged in our limited senses to recognise the actual reality. The underlying perilous pharmaceutical market and government establishments have agendas for their self-interests. Consumerism favors the established, like harsh prescriptions to incorrigible wounds. Precious knowledge of medical jargon is kept from citizens as there is often misguidance and an absence of transparency, mangled into the space of existing hospital structure that cannot be envisaged or broken through. We are pushed into an adversarial front, between them and patients along with care givers, in the pit of survival of the fittest.

1. Unavailability of essential medicines.
2. Cost of Medicines.
3. Arbitrary use of them by doctors/nurses.
4. Lack of training to medical personnel.
5. Inadequacy of action taken on behalf of the influential.
6. No training given to common man in palliative care.

A forlorn picture is canvassed. The onus and liability is of the government and medical private sector to provide a sacrosanct relief to the patients and their care givers. The reality is far divorced from an unprepared set-out legal framework, amendments to Narcotic Drugs and Psychotropic Substances Act and lack of budget to the National Program in Palliative Care is not fully realised. The burden gallops onto individual and self-sustained organisations such as Indian Association of Palliative Care and Pallium India to fill in the gap. They are as strung with nefarious issues and seldom manage to reach out to patients in public care. Globally, in 2011, over 29 million people died from diseases requiring palliative care and the estimated number of people in need of palliative care at the end of life was 20.4 million.

A woman peers across a lit lantern. Image Credit: Mekhala Dave
A woman peers across a lit lantern. Image Credit: Mekhala Dave

In the reasoning of John Rawls’ “A Theory of Justice”, there are two principles that aptly turn the wheels on situating palliative care. Firstly, under the veil of ignorance, information is kept from each other relating to identity, gender, host of experiences, disabilities or one’s belonging to society to diminish prejudices, and secondly, when people are reduced to original position and everyone functions at the same level by ignorance of knowledge that very much defines them, they can meet their basic social and economic needs. This results in a just and fair system which is quintessential at the point of pulling the plug, to patients and care givers alike at that moment, nothing else matters.

Although, Rawls’ conjectural tinges may be idealistic, when health is concerned, human rights and dignity should be the utmost priority. The vein of the Indian Constitution is in Article 21 called ‘Right to Life’ and reflective of how delicately human rights should be preserved. India is also part of the treaty to Article 7 of the International Covenant on Civil and Political Rights that states “…no one shall be subjected to torture or to cruel, inhuman or degrading treatment.”

Even when truth is not all pervasive and refracted through several lenses as perceived by individuals, truth and empathy remain the most domineering elements and is very much potent in natural rights. Equal treatment is universal and finds itself at the core of natural rights, with moral and ethical undertones, not artificially colored with institutional parameters or cultural interpretation. There is no preconceived societal mandate or ‘state of nature’, as natural rights is directly derived from the essence of natural reasoning, present in every single one of our mind’s consciousness.

What more direct evidence do we need to undo complexities that underpin burgeoning ground realities? Everyone is an equal for palliative care without any peripheral dictation of what is and what ought to be.

Family structures in India have an interconnectedness, the idea of an obligated dependency that favors our health care system. As participant care givers, they endure a sullied environment like walking through countless doors. The difficulty to pay hospital bills in heightened figures, investment in medicine to doctor consultancies and all the more to provide emotional support for the patients. The emotional state of care givers is consistently undermined and derelict. Nancy Borowick, former Magnum Photography award winner, is known for her series on ‘Cancer Family‘. She undertook the project to photograph her parents with cancer and they passed away, a year apart from one another. Through her visuals, the feeling of strength and love emanate candidly and naturally that demonstrates care givers’ zealous connection with patients.

In wake of this ghastly system, we are fundamentally human and ache for basic psychological and tangible amenities. Patients and care givers are enslaved to the deficiency of legal and moral edifice that no longer serves them but postulate as an additional impediment to peaceful and spiritual death. Death is a spiritual parting, a beacon of light and celebration of the years spent on this gentle planet. Somehow wrenched in the now and them, of sorts.

Instead of leaning onto the existing health care framework where movement of undoing injustice and exploitation will be a stretch, citizens should organise and train into how to be part of palliative care from tender ages through formal education. Although, post-graduate courses are being integrated in medical and nursing curriculum across India, citizens should also be made aware of rudimentary palliative care practices willingly, cooperatively and publicly. Often, reality is sheltered from young-lings for emotional scars of dealing with pain, suffering and loss. Loss is integral of going the distance, for a cosmic and worldly awakening. Learnedly and psychologically, citizens should collectively implore the meaning of death which is an inescapable truth with the support of one another, medical personnel, non-state actors and even in divine faiths. All the while, access to health care is the ultimate natural right. Vanitas, motifs in funerary art, reminds us that in the evanescence of life, death is inevitable, only we mortals can comfort the departed.