The whimpers from the ventilator

Most people do not want their loved ones to reach the stage of eternal oblivion or them to get transformed to an extraterrestrial status in any heavenly or hellish surroundings so soon. Even when they are in their late eighties or in the nineties, we would like to have them with us. Death is a reality which we would not like to accept so easily. 

My grandma loved to live life ‘king size’. She took care of her health meticulously for several decades without missing her medicines even once.

 In my ‘Letter to Grandma’, I wrote:

 “You liked medicines, regular hospital visits and long chats with your favourite physician, Dr Ravichandran, a man of very few words. When one had to wait patiently for a word to come out of his mouth and lend the ears completely and place them in proximity to his mouth, and struggle to watch closely his lip movements to decipher what he says, how could you spend such a long time with him who was known for his irritating silence and expression-free face? Your unstinted faith in the doctor and in the Allopathic medicines made you feel better from a host of ailments for many decades. I used to see you popping several tablets of different colours into your mouth since your early forties. That is my earliest memory which I can recall as a nine year old boy, who used to spend my days in your house, skipping school faking headaches. Even when you were in the hospital, you never missed to apply Pears face wash, Ponds face cream and ‘Cuticura’ talcum powder. You always went to the surgery table with a smile after handing over the keys of your treasures kept in your room to the nurse and not to any of your children or grandchildren”

From the above extract, I am sure you could understand the ‘persona’ of my Grandma. She loved a royal life and appreciated the creator and the creation. 

Neither she nor we, the close relatives, realized when she was admitted to the best corporate hospital in the district with the complaint of a skin infection on her legs that she would not return to her home. Within a few days, she developed respiratory tract infection. Her heart worked fine with her third pace maker. But the chest infection became serious and she could not breathe normally. She continued to be in the Intensive Care Unit. As her condition worsened, the doctors briefed the situation. They asked her children whether they can move her to the ventilator, though the survival is difficult even with ‘life support’. As all of them wanted it, she was put on a ventilator. Most of the children and grandchildren who are around, sat outside the room for days together.  They went to see her one by one during the permitted time every day. 

She took hold of the hand of one of her sons and scribbled something with her finger on his palm. She looked at him and having realized that he didn't understand what she wrote, took his hand again. She ‘rubbed’ what she wrote earlier with her fingers and wrote again slowly. The son could make out what she wrote: ‘Pace Maker’. Everybody knew why she wrote that. She had thought that the current problems are because of the pace maker or its battery and it needed to be replaced. She knew about the huge cost and wanted the children not to hesitate in ordering the device thinking that it is of no use at the old age. She didn't want to leave this beautiful world. “At any cost, I want to be back at home”, that was the expression.

Slowly, it was conveyed to her that pacemaker was working well. She realized that something else was seriously wrong. Whenever we met her inside, we saw tears flowing down. She might have felt claustrophobic with the mask and tried to pull out the wires and tubes. As days went by, she felt that survival is bleak and her eyes pleaded us to remove her from the life support. She couldn't tolerate the pain, suffocation and the state of helplessness. But, for her children, they wanted to trust the words, ‘10% chance of survival’, given by the doctors even if each day in the ventilator added huge amounts to the hospital bill. For a person who loved life and who was always optimistic, they thought, nothing should be left without trying. 

       Photo by Dr. Vanita Mathew

There is a roll call for all of us to leave the world. There is no exception. And my Grandma died in the early hours of the day. After the funeral, we came back to her home and found two sheets of paper in her cupboard where she had neatly listed her treasure and clearly written who will take what as per her assessment of the needs. She wrote: ‘Dear children, you should never fight and you should take care of each other. Please do not forget to offer Holy Mass every year on the day of my death and pray for me at my cemetery’. 

I can’t tell that it was a peaceful death. I am sure she went through her worst in those days than during her entire lifetime. Though she had an ardent desire to live, the ‘artificial’ life with the help of ventilator would have made her hate the world. I ask myself: Were we right in putting her in the ventilator for weeks? Shouldn't have we given her an opportunity to leave the world naturally while at her home with all of us nearby? 

A few months back, I came across an excellent and thought provoking article in the ‘Malayala Manorama’ daily by Dr Suresh Kumar, a passionate speaker and writer on the subject. He is the Director of Institute of Palliative Medicine, Calicut, Kerala.  The article is in Malayalam. I have given below a few valuable points he made in the above article. 

‘Whenever I took classes to the Doctors in India and abroad on Palliative Care I asked this question: ‘Are you ready to die the way your patients died at the hospital bed?’ Most of them told me they weren't. They are very much aware that hospital is not a place for peaceful death. Why then so many people made to spend their last days in hospitals? To this question, they say ‘external pressure’.
There are many types of pressures. If we ask the doctors, they would say that there is pressure from the relatives of the patients. In private conversations, at least some doctors would admit that there is pressure from the hospital management. If we ask the relatives of the patients, they would say that what public will think if we take our dear ones home without trying all available facilities at the hospital, though they knew that won’t help.
For patients, spending their last days in ICU is a very traumatic experience. One could imagine, how these patients felt, as they were made to spend their last days amidst a few machines, wires and unfamiliar people. They would have wished to see their near and dear ones at those moments when they had to leave the world.
There is a mind-boggling economic dimension to the above scenario. Statistics indicate that in Scotland, half of the annual income of a hospital comes exclusively from the patients who spent their last days in that hospital. As per the estimates from the medical insurance sector in the United States, people incur majority of their medical expenditure in the last six months of their life.
I don’t say that one should not go to the hospital for a major ailment. Hospitals can certainly provide necessary relief. However, the society should also think about the significance of peaceful death at the most comfortable and happy environment. Person should be made aware of the fact that the death is nearing and there is no way it can be prevented. That awareness can make her prepare for the inevitable eventuality through an introspection of her life. She might want to talk to others and share many things to them. The dear ones would get a chance to be near her.’

Which better place to spend the last days than in one’s home?  With whom one can find peace and happiness other than the near and dear ones? As Dr Sureshkumar rightly mentioned, an open debate is necessary on this subject. The government, hospital management, doctors, relatives of the patients and the public should understand that patients who are in their deathbeds have their rights, aspirations and wishes. Of all of them, the doctors under whom the patient is admitted, play a crucial role in advising the relatives correctly, without succumbing to any social or professional pressure or any financial interest, to ensure a peaceful ‘departure’ to those patients whose chances of survival are limited. 

                              © Sibichen K Mathew         Views are personal

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