CME INDIA Presentation by Dr Anand Malani, MD, Sangli (Maharashtra). Interest – Critical care/ Infectious diseases/ Rheumatology.
After writing few scientific articles about COVID, it’s time to write the views as experienced from the other side! I mean from the patient’s side, relative’s side, some social aspects and some facts about COVID death and the proceedings thereafter.
COVID hit me and my family very hard and bad!
Total 12 members in family and extended family were affected and all were first degree or second degree relatives of me and my wife. Total 6 of them needed Remdesivir therapy, 4 cytokine storms, 3 became critical but managed to recover and 1 death. This was a severe brunt to bear and that too from all aspects – medical, emotional, physical, logistical and financial as well. I somehow managed 10 of the patients myself at my home!
Home turned into a COVID hospital
Technically speaking, my home has turned into a COVID hospital all these days with all necessary equipment at my disposal. I was doing duties of consultant, house officer, nursing and housekeeping as well, as it was not possible to call any staff for help except on few occasions with proper protective measures. I was under pressure to admit them all including my selves but it was very difficult logistically and more importantly I intended to keep all decision making with myself which wouldn’t have been possible with admissions at different places. And I was quite strong, confident and prepared for that!
Needed to admit 2 members, both of my in-laws in a COVID ICU for compelling indications. Father-in-law succumbed after a long fight of 15 days. They both stayed and were treated in the same cubicle for initial week, later on were separated as one became critical.
Experience from the other side is terrifying!
Even though he received best of the treatment in a hospital which I believed, the overall experience from the other side is terrifying!
After all, staying for 14 days in an ICU in a critical condition, and later on dying a lonely death is a punishment harsher than anything else for a crime one hasn’t committed. A humble man who rose from poverty, who committed and sacrificed the most precious of his lifetime for the upbringing and education of his kids and their betterment all his life. Even karma wise he didn’t deserve this.
When I took him to hospital for admission, he was sick with fever, breathlessness, saturation of 90% post walking and CT score of 10. All this within the first 2 days of illness. I knew the prognosis then. Still he was cheerful, walked to the car, asked me for his favourite gadget, a tab for he wanted to make some digital payments!
He was much comfortable after starting appropriate treatment and oxygen during first 2 days of his stay after which he developed severe hypoxia and needed to be shifted to a more advanced setup for further therapeutic requirements. Luckily enough they could manage to keep both of them in the same cubicle. It was impossible that he would have stayed alone.
My mother-in-law is also an old, fragile lady with poor cardiac reserve, extremely fearful, fully dependent on her husband for even minor needs. She couldn’t even use a mobile except for receiving calls. All she could do was to oppose the idea of giving her mangalsutra away as it was against hospital rules to wear any jewellery. We were extremely anxious that how the things are going to proceed?
Notches below normal
It is indeed difficult to be in a COVID ICU, both as a health care personnel and more so as a patient. The care you receive is some notches below normal, even in good hospitals. I am not complaining or demeaning COVID warriors but this is very true and applicable to all hospitals at least in our region for varied reasons, the major being the overload of work with scanty resources. Less staff, less compassion, sense of supremacy among some is seen everywhere.
Consultants are so busy and overworked and cannot spare more than essential minutes with each patient maximum 2 times a day. Medical officers, resident doctors and staff is all that you have to depend upon. It is impossible for most of the hospitals to get 24 hours intensivists or consultants, which should ideally be the standard of the care.
Patients are completely dependent on the staff for the smallest of their needs. Patient is even unable to drink water or void without help. Many patients with severe disease look deceptively well and are not permitted to use washrooms. There are many examples of patients collapsing in washrooms.
Fortunately, we had a good experience and got reasonably good services and care despite all odds. Many a times my mother-in-law became the primary care taker or first responder. She used to feed him, give water, give bed pans despite being sick herself.
Gradually my father-in-law worsened and became irritable, delirious, and incontinent, and started remaining awake whole night. It was testing time for my mother-in-law. She never was in such a situation anytime before, never had to undertake so much of responsibility. Her mental condition, agony on the background of illness was unimaginable. She was not aware of all the COVID protocols and used to ask frequently that why we are not visiting them often? We were also getting anxious and felling quite helpless. Due to multiple problems at home even I couldn’t go frequently. I used to get regular updates from consultants, house officers and even staff.
The anxiety just before reading the update on WhatsApp was intense to bear even for a seasoned consultant like me.
Shivers down the spine on thinking about it.
Sadly, our patient deteriorated. Eating and drinking was also a problem due to severe stomatitis. Later on, he needed high flow oxygen therapy scaled down to low flow in 3 days, then again escalated to high flow and then finally non-invasive ventilator. His senses deteriorated. He still could recognise me and murmured something incomprehensible. He was placed in a separate cubicle then.
What could be going on in his mind all these days before he became altered? No relatives by side to talk, to reassure, to help! Any wishes? anything he wanted to talk? Did he knew his fate? It still sends shivers down my spine on thinking about it.
The worst part!
Finally landed up in cytokine storm, apparently recovered with Tocilizumab, then secondary infection, thrombocytopenia, prolonged bleeding post RT insertion, failed catheterization, bed sores, generalised stiffness etc. Even if he would have recovered, the quality of life ahead certainly wouldn’t have been the same anymore. That was the worst part!
Finally, God had pity on him and took over one fine morning! And somehow my restlessness and anxiety eased away! I conferred the term Corona Warrior to him. Why not? Those 14-15 days were a kind of war which he ultimately lost!
Then came another challenge, to inform my mother-in-law about it! She being frail, cardiac compromised, and already broken mentally in 14 days. There was a substantial risk of mental shock followed by some arrhythmia due to hyper adrenergic state.
Finally, managed it in the hospital settings with due risks successfully.
Referred to as ‘body’ by everyone
Now came the most painful part. As second swab on day 14 was also positive, the last rites would be performed by the corporation people as per COVID protocol. We could not take home the mortal remains! ‘Body’ in other words. I realised how suddenly a human being, whoever he may be, loses his identity and everything upon dying and is just being referred to as ‘body’ by everyone including us!
We managed to wait till my brother-in-law reached. Meanwhile my mother-in-law along my wife had a ‘last darshan’ in the hospital itself and then she was shifted to my home after stabilizing with clonazepam.
Hospital wrapped the mortal remains in a bedsheet and then a plastic covering and then in a flexible coffin shaped coverall with a transparent window over the face. Could hardly see anything proper besides identifying. We were asked to take photographs if we wished as afterwards they were not allowed. The same photo has to be circulated on social media to near and dear ones to have last darshan! What a time!
The beginning of his journey to the other world began in a dilapidated ambulance or rather transport vehicle with a driver having equally dilapidated brain and heart. Rude, tantrum throwing, negligent person with rough driving.
Constantly shouting for nothing
At the crematorium, a set of similar people with dilapidated brains and hearts received him and hurriedly put him on the pyre. Two of us were allowed inside in PPE kits and after some informal formalities. They were constantly shouting at us for nothing. Don’t do this and that, don’t stand here and there, no photos, no mobiles.
Now enough, come back.
One satisfaction was that my brother-in-law could lit the pyre. No other rituals were possible. We were hardly there for 10 minutes or even less. While going back we were given a wash by some pressurised sanitizer spray. Didn’t smell anything! Was it just water? Then we were asked to remove our kits and throw it into the open dumping facility on the walkway itself!
We were obliged and thanked them for allowing us in. Next morning, we even got some of the ashes again after some informal formalities. What more we could ask for?
I am personally a religious person, of course not blindly religious, and a believer of all rituals and was very keen on them.
Flawed cremation policy
At this juncture, I will talk about this flawed cremation policy.
Nobody is bothered to speak to our unruly people or enforce them just to use masks and follow distancing; which are most important things to reduce or prevent transmission. They are the Vaccines against COVID. And we are very strict about cremation or last rites!
Scientifically speaking the chance of transmission of disease from a properly packed and handled corpse should be negligible.
The virus cannot survive for a long time in dead cells. And even if it survives, dead bodies don’t breathe and cannot generate aerosols. Once the pyre is properly lit, the barriers are going to break, but in 600-800-degree Celsius temperature. The virus cannot withstand 75-80 degrees.
Masks and coveralls and distancing can still be used as a precaution. Maybe bodies should not be allowed home, but at least close relatives should be allowed for last rites including the religious proceedings with proper precautions. It’s allowed in many parts of the world.
Arguing in a spiritual manner
We were fortunate on one more occasion! We could perform all the religious rites, including symbolic cremation with Mantragni, although in a consolidated manner at a holy place called WADI on the third day. And that too were arranged with difficulty. The pundits were also busy and not available easily. Fortunately, one of them agreed and it was a sigh of relief. There were many aggrieved people performing similar rites for the departed souls. Many were COVID victims.
More surprising was that many were not using masks, even few pundits! I tried to confront one pundit and requested him and his party members to wear masks. He argued with me in a spiritual manner – that the time of death of all is fixed, and that those who believe in Gods should not use masks and so on. I soon backtracked and just felt sorry for our people.
We were satisfied with the proceedings of the rituals. Even my brother-in-law and his family staying far overseas who were feeling even more helpless than us could watch everything online and there was a reason to be happy in the sadness. We happily paid the dakshina to the Pundit and started for home.
The purpose of the article was to bring out the pain and sufferings of a patient and their family. I hope everyone involved in COVID care continue to do the same with more compassion and integrity. I hope more people follow mask and distancing practices to avoid getting into my place.
Please stay safe and take care!
I acknowledge and am immensely thankful for the tremendous social support and mental support received from all close friends, senior colleagues, relatives and well-wishers, my hospital staff, and also equally thankful to the care givers of the involved COVID hospital!
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