Cleaning the bottom

Some challenges are unacknowledged and under addressed. Maybe because they are about very personal emotions. Thus not fitting into the framework of a ‘complication’. The loss of control over excretory functions, the challenge of voiding urine and stool in a container or diaper and being cleaned by a stranger involves loss of privacy and dignity. Pain could be controlled with pain killers but how does one address this

A month ago, at a conference organised by colleagues from a department of the hospital I work in, there was a rare felicitation event. In a heart-warming gesture, the Intensive Care Department felicitated patients who had been critically ill due to Covid and recovered. Most of them had spent days hooked on to ventilators. As patient after patient came up on stage, many bearing scars of tubes which had been put into their windpipes, some mustered courage to take the mike to share their feelings. They recounted their days in the ICU and thanked the staff. A few even remembered patients who were on neighbouring beds and could not make it. As felicitations go, it was not only touching but exceptional. I can’t remember patients being felicitated at a medical conference. Moreover, it’s rare for a packed auditorium of hospital staff to listen to patients’ stories.

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Towards the end, a senior doctor colleague who had been in the ICU for a prolonged period with severe Covid was called. He said something in a matter-of-fact way. ‘In so many years of practising medicine I never appreciated something. While doctors are important, there is an equally important person in the hospital whose work you appreciate only when you are a patient lying on the bed. That is the person who cleans your bottom’.

The words stung me but I soon forgot about them. They resurfaced in my mind last week when a close family member was condemned to bed. Though privilege allowed us to hire someone to look after her, there was the occasion when one of us had to pitch in.

My colleague’s words may resonate more with those immobilised in bed or those involved in the care of a bedridden family member. But even for the rest it’s not very difficult to imagine the urgency or shame of lying-in one’s excrement waiting for someone to clean it. But why should you?

As if illness is not enough disruption to life, hospitalisation is, in more than one way. There is fear, anxiety, lack of sleep, isolation, noise, hunger, thirst and fatigue. It would be vacuous to attempt to rank them in some kind of order. But immobilisation creates further challenges. Pain, stiffness, the weight of one’s immobile body on a mattress causing pressure sores. Infections. There is a whole science in modern medicine around preventing the complications of immobility.

But some challenges are unacknowledged and under addressed. Maybe because they are about very personal emotions. Thus not fitting into the framework of a ‘complication’. The loss of control over excretory functions, the challenge of voiding urine and stool in a container or diaper and being cleaned by a stranger involves loss of privacy and dignity. Pain could be controlled with pain killers but how does one address this?

The Pakistani British writer Hanif Kureishi has set social media agog with tweets from his hospital bed in Rome where he has been suddenly hospitalised after a fall which left him paralysed neck down . It perhaps needed the keen observation of a writer and a way with words to describe in graphic detail the grotesque indignities that this state brings along. His raw descriptions of the daily distressing experiences and the sheer pathos of his sardonic humour has attracted a huge audience. In graphic portrayals of himself and his co patients struggling with varying degrees of inability to void urine and stool and encounters with diapers and enemas, Kureishi has captured a worldwide audience with despair and eloquence. Besides outpouring of support, Kureishi has received several suggestions from patients and carers.

Given the shortage of staff in many hospitals in India, it is a family member who is anyway partly caring for the patient. This also involves providing the pot and pan and cleaning up. One major challenge during Covid was the unavailability of the family member. Mumbai’s municipal commissioner, whilst discussing some of the deaths, admitted to this challenge.

Any discussion on this subject would be dishonest without a mention of who does the job of cleaning the bottom in Indian hospitals. Across states, there are varying terms for this stratum of employees. But they are almost always from marginalised castes. Inherited as a family profession. Unrecognised, underpaid and often shouted at.

There is much sloganeering about humanising healthcare and making it patient friendly. Usually it focusses on politeness, ambience and efficiency. But there are many areas which await even acknowledgement. Cleaning the bottom in a sense is a metaphor for the hidden indignities of being in a hospital. Whilst there may be no quick fixes, even just acknowledging that this loss of dignity is what hurts patients may lead us to work towards solutions. Whether it is a more convenient pot, a bedside commode, a gentler enema or just more privacy, patients may appreciate this more than faux politeness.

Our ordinary patients face challenges with a certain fortitude and inevitability. But surely they have will many stories to tell if given the opportunity. When doctors become patients, they offer insights partly because they can and because they are allowed to. That’s what my colleague did. When an accomplished writer turns patient what else can they do but write about it? And if it’s someone like Kureishi, why won’t he put his sardonic humour to use to share his despair. Whether deliberately or not both have helped in shining the spotlight on an embarrassing challenge at the bottom of healthcare.