HEALTH ISSUES
Incredible burden of caring
HARMALA GUPTA
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There is a real need to create services that give palliative care to patients and families nursing them at home.
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Currently, our programmes are geared towards prevention and control of disease and its treatment and cure but not towards palliative care.
THOSE who run this country need to salute the families who live in it. If it were not for them, there would be abandoned people from one end of the street to another. Looking after sick people, especially those with chronic and life threatening illnesses is a long, back breaking, often unrewarding and ultimately lonely affair. In India, for the poor and the lower middle class, it is hell on earth.
Every day, we are privy to the desperation of people who cannot afford to treat their loved ones at a medical facility but have to continue to earn a living and survive. Even spending to bring in a patient who is too sick to use the public transport can become a question of life and death. The choice before them is either feed the family that day or bring the patient to the hospital for treatment. Even when they do the latter, it is likely that their effort would have been in vain as there is no guarantee that a bed will be available. The tragedy is that our present medical system and those who plan and administer it are not oriented towards helping the poor patients and their families and those living far away from the big cities.
What about rural folk?
The majority of diagnostic clinics, specialty centres and hospital facilities are concentrated in large towns and metropolitan cities. It is estimated that presently only 20 per cent of hospital beds are in the rural areas where the majority of our population reside. Those who live in villages and small district towns have no option but to spend huge amounts on travelling to and fro and living far from home in an expensive and inhospitable environment. The hospitals, which become their subsequent haunting grounds, and the hospital staff they meet leave them feeling even more bewildered and confused.
Recently I visited what I thought was an exception to the rule — a specialty hospital located in a district town far away from Delhi. A philanthropist started this with the intention of sparing people with cancer and their families the long and painful trek to Mumbai. Despite the best of intentions and facilities, the numbers attending the hospital have continued to dwindle over the years.
Further investigation revealed that the ills that plague the medical system are widespread and extend to all corners of the country. Doctors in this hospital would rather refer patients to private pharmacies and diagnostic centres in the town because they could make money. Consequently, those who came for what they thought was affordable treatment now no longer do so.
How is one to stem this rot? The government seems to think that the best way forward is to encourage private enterprise to enter the medical field. Many respond in the hope that of rich profits to be made from treating foreign patients. But what about poor and middle class patients with limited means who live here? Where will they go when they are sick?
I recently heard an eminent doctor speak at an oncology conference in Mumbai. He illustrated his argument against the privatisation of health (95 per cent of health facilities are currently in private hands) with the dramatic announcement that should any member of the audience (primarily retired middle class professionals) be admitted to the ICU of the private hospital where he worked for three weeks they would be looking at a bill of Rs.20,00,000 at the very least.
Keeping this in view, not only did he plead that the government invest more in maintaining and expanding public medical facilities but he also advised people to pray that they remain healthy till the end and then drop dead. Otherwise, it was possibile that they would be taking their families' future hopes and aspirations with them to the grave.
He also drew attention to the anomaly that at a time when people are living longer medical insurance companies discriminate against the elderly and are unwilling to give them medical coverage.
With the increasing incidence of non-communicable diseases such as cancer, diabetes, Alzheimer's, we are ironically facing a situation where we cannot afford to die. The majority of hospitals will not keep our elderly relatives with chronic and debilitating conditions. Neither is this the place for them.
Care at home
Ideally, we should be able to care for them at home with support from the healthcare system. Currently, our programmes are geared towards prevention and control of disease and its treatment and cure but not towards palliative care. There is a real need to create services for the community which aim to give symptomatic relief, nursing back up and emotional support (palliative care) to patients and families nursing a sick loved one at home. This does not require sophisticated technology or expensive interventions aimed at cure. A local team of health professionals can administer it and a community volunteer trained in palliative care.
It is finally about treating people with respect rather than exploiting them because they are vulnerable. If we do not take corrective action right now and provide a nationwide network of palliative care, we face the prospect of remaining mute spectators to the break up of the family as the burden of care becomes too heavy to carry. Already, patients are being abandoned at hospitals when it becomes clear that the treatment prescribed will be long and financially onerous. Can we continue to allow this to happen in good conscience?
The writer is the President, CanSupport, New Delhi.
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