What is palliative care?
The World Health Organization has defined palliative care as: “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, impeccable assessment, treatment of pain and other problems, physical, psychosocial and spiritual."
By Dr MR Rajagopal
Imagine yourself waking up one morning with a really bad cold. Your body is aching, you are sneezing away, your nose is blocked, throat is sore and you are feeling miserable. It is audit day at the office;you cannot possibly take rest. You also fear that it may be one of the nasty new kinds of fevers. Could this be dengue?
You get to the doctor on the phone. He seems to take it very lightly. “Take a Paracetamol and get some rest” is what he says. Before you proceed, he has hung up.
The difference in perspective between you and the doctor is striking. To you, the problem is your cold, your pain, the interference with the routine work and your fear all put together. To the doctor, it is just a common cold. AmartyaSen calls it the difference between the internal view (the patient’s view, focussed on the suffering) and the external view (the doctor’s perception - focussed on the disease).
If the distinction is so striking even in the matter of a common cold, how dreadful it can be when it is something really serious, like a heart attack, a stroke or cancer? The doctor takes refuge in Latin words signifying the names of diseases and often does not seem to understand the suffering that is induced in the patient by the medical problem.
In the second half of the last century, came the technology revolution. New imaging techniques enabled the medical professional to precisely diagnose and localise disease processes. Rather imperceptibly, healthcare service got converted to healthcare industry. In this whole process, the medical professional became more of a technologist, concentrating on diseases more than ever and often ignoring the suffering that went with patients.
Palliative care formation
It was in this medico-technological nightmare that palliative care came in like a breath of fresh air in the 1960s and gradually spread across the world. It seemed to give new meaning to the World Health Organization’s definition of health as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.”
The World Health Organization defined Palliative Care as:"Palliative care is an approach that improves the qualityoflife 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 impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual."
The emphasis is on quality of life. The definition says that it is applicable in all life-threatening diseases; perhaps it is important to point out tshat life is not something to be defined only in the matter of time; it is also one defined by quality. A young man, who falls from a tree and is paralysed from the waist down, may still live for a long time, but his life in the broader sense of the word is threatened, nevertheless.
Again, by definition, palliative care addresses suffering not only of the patient, but also of the family. The suffering of family members is something that the medical system has, by and large, ignored. The concept of palliative care forced healthcare professionals and others to look at suffering as a whole, and to perceive that when one person suffers agonising pain or is facing a fatal disease, the whole family suffers, leaving indelible scars on the family, including the next generation.
Beyond diagnosis and curative treatment
Palliative care also recognises that suffering from a disease is important beyond a diagnosis and curative treatment. From the physician’s external view, the pain and suffering may be just a matter of time. Eventually, when the course of antibiotics or the course of chemotherapy is over, the disease would get better. But the patient and family are totally unable to take this dispassionate external view. For them, the suffering is real and now, and the medical system fails them, if they do not take that into account. Palliative care tries to look at disease from the internal - the patient's and family's - point of view and to seek solutions for all domains of suffering.
This recognition has happened all over the western world but in the developing countries where the burden of suffering is much more, paradoxically, care is too oriented to cure alone.This fact led the World Health Organization to pass the landmark resolution on January 23, 2014, recommending to the World Health Assembly in favour of integration of palliative care into routine healthcare.
(The writer is the founder of Pallium India)
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