Blackouts, black fungus, but still...empathy

‘Ma’am, there is no electricity. So couldn’t locate phone.’

This message from Dr Utkarsh Bhardwaj from his flat in Patna, explaining why he had not answered my call.

On top of a devastating second wave of Covid throughout India, the north-eastern states are also suffering the effects of Cyclone Yaas.

Year on year, cyclones brew in the storm-friendly cauldron of the Bay of Bengal. The Indian states of West Bengal and Odisha bear the brunt of the high winds and torrential rain. But then the storm brings heavy rain to neighbouring Bihar, the roads get flooded, unstable buildings collapse, electricity pylons go down and the lights go out.

This year Cyclone Yaas – named after the sweet-smelling jasmine flower – brought a trail of filth and debris and unsavoury smells to a city already known for its dirtiness. For a while it shut down Patna Airport disrupting the delivery of essential medical supplies.

Nonetheless, Dr Utkarsh and I were able to have our conversation, he standing in his darkened kitchen and me in a sunny bedroom in London.

We wanted to discuss the latest Covid medical complication –  the deadly black fungus infection, mucormycosis. It is particularly frightening for people because its manifestations are so gruesome and visible, darkening the inside of the nose, mouth and skin around the eye.

The mucor fungus is breathed in from the air and can hang around harmlessly in our noses. However, in patients whose immune system is compromised by an infection like Covid and whose nasal passages are severely damaged by the illness, this opportunistic organism can take hold and kills over 50 % of patients.
In India so far, almost all these unfortunate patients are diabetics whose disease is poorly controlled and made worse by steroids given as part of their Covid treatment.

The last resort surgical option, to try to save life, falls to an ophthalmologist. This is because mucor tries to reach the brain – via the nasal passages, the sinuses, the eye and the orbit. To avoid it causing a fatal stroke, the eyeball and surrounding structures are removed.

This radical surgery- known as orbital exenteration -  is utterly traumatising for both patient and surgeon. The task is usually undertaken by an eye doctor specialising in plastic and reconstructive surgery…like Dr Kasturi Battacharjee.

Both Utkarsh and I had seen Dr Battacharjee’s presentation on a webinar organised by the All India Ophthalmological Society. She was speaking from her hospital in the north-eastern state of Assam.

Dr Battacharjee discussed mathematical models designed to help surgeons decide when they should go ahead with exenteration. And expressed concern that there was ‘no clear evidence’ in medical literature to confirm that exenteration actually helped survival rates.

The most moving part of her presentation, and indeed the section that evidently moved her most, was when she put up data about the psychological consequences of removing an eye and the disfigurement caused even with reconstructive surgery and prostheses. (The data came from patients in the past who had had the surgery for conditions like cancer). These were the findings:

All patients were 100% happy with the medical result.
But when it came to the way they looked, only 50% were OK with this.
60% reported suffering routinely from unwelcome comments and 50% from unwelcome stares.

Dr Battacharjee added, with emphasis: ‘This is so sad...60%, reported feeling uncomfortable even when in the company of their closest friends and relatives.’

Dr Battacharjee urged her colleagues to think very carefully about going ahead with removal of the eye and to spend time preparing the patients and their families for the long term psychological and social effects.

In Bihar, Utkarsh is working at one of three centres in Patna city dedicated to handling patients with mucormycosis. I asked him what happened when removal of the eye was discussed with patients.

‘Actually Ma’am they are not giving their consent. When we go through all the details with them and show them pictures, they don’t agree to go ahead with surgery even if we say that it may improve their survival rate.’

Early diagnosis and treatment with the anti-fungal drug called Amphotericin B is considered the best approach, along with some surgery to remove the fungus from the nose or mouth.

However, Amphotericin B is not available where I am, said one doctor at the conference. Supplies are not guaranteed, announced another. There were a few sympathetic head shakes from the postage-stamp images on the webinar.

‘Well, this is where we are right now’ said an ophthalmologist in Delhi, with a sigh and weary voice. ‘We do what we can do for every patient.’

The reason I am telling you this story is not to add to the gloom over what is happening out in India.
I want to highlight the empathy that I witnessed amongst this group of ophthalmologists at a hastily convened medical webinar in unprecedented times. It cheered me up.

Dr Battacharjee had reminded her colleagues that exenteration was a shared trauma for doctor and patient. Her colleagues sombrely agreed.
This is where we are. We do what we can do for each patient. Let’s hope we learn more for the future. Sentiments shared by doctors all over the world, empathising with their fellow professionals as much as with their patients.

Sadly, the pandemic has not brought out empathy in everyone.
On the same day of the webinar, I was forwarded a shocking video called ‘If I die, it’s your fault.’
Made by the Institute of General Practice Management, it contained a catalogue of the worst verbal abuse endured by receptionists at doctors’ surgeries in the UK during the pandemic.

The words– ‘if I die, it’s your fault – was the most common abusive accusation aimed at receptionists.

Only a serious shortage of collective empathy could normalise such behaviour.
Only the loss of the ability to empathise would result in the IGPM having to remind the British public that doctors’ receptionists, like patients, had suffered bereavements, caught COVID, had had to self-isolate and not see families…and that some had died during the pandemic.

The concluding appeal was ‘In a world where you can be anything, be kind.’

I think the empathy muscle sometimes needs reminders to exercise. Which may be why I found scribbled on the cover of one of my old diaries, this quote from JM Barrie’s The Little White Bird:

‘Shall we make a new rule of life from tonight: always to try to be a little kinder than is necessary.’

Lucy Mathen

#ifIdieitsyourfault #theempathymuscle

#wedowhatwecando #blackfungus #kindness