'How many people have died in India so far due to Covid?'
'Multiply that by at least four, and that many people in intense grief are there in the country.'
Confined within the four walls on one's home for months... And, above all, the gnawing loneliness.
These are the consequences of the pandemic which people in India and all over the world have been experiencing in the last seven months.
Loneliness aggravates when one loses a dear one, when there are few to share one's grief.
It is for these grieving people that Pallium India has launched a national helpline Sukh Dukh (available on +91-87077447046). The partners in this initiative are Caregivers Saathi from Mumbai, Mind India from Assam, and EdJacklegs from Bengaluru.
This helpline is available in eight languages: English, Hindi, Assamese, Tamil, Telugu, Kannada, Malayalam and Kannada, and it has 14 voluntary counsellors spread across India.
Pallium India has been doing pioneering work under Dr M R Rajagopal, offering palliative care to hundreds of needy people.
Described as the father of palliative care in India, Dr Rajagopal is the director of the WHO Collaborating Centre for Training and Policy on Access to Pain Relief.
"Somebody wrote that the only connection that was returned to the family was a cell phone wrapped in a plastic cover... So, it is a cruel kind of departure, and this causes complicated grief to many people from which they find it difficult to come out," Dr Rajagopal tells Shobha Warrier/Rediff.com.
You have been healing physical pain through palliative care for many years. Now, you are moving to alleviating mental pain. Did any incident trigger the start of this initiative?
We have all along believed in the concept of 'total pain', so this (initiative) is not something that is new.
The concept of 'total pain' was started by the founder of modern hospice movement, Dr Cicely Saunders. She defined 'total pain' as physical, psychological, social and spiritual pain.
I will give you an example. A person suffering from cancer may have physical pain, but this leads to many emotions in her/him like anxiety, guilt, anger, etc. These are all negative emotions that can cause more suffering and pain.
So, a disease and emotions are not just electric charges caused by the impulses that go from the nerve endings to the brain. The amount of pain he experiences varies depending on how depressed or angry s/he is.
When you are lonely, every pain experience becomes unbearable. Even worse is when you are with someone who annoys you. This is the social aspect of pain.
In our country, the financial element also is connected to the social pain.
Every year, in our country 55 million people move to below the poverty line because of medical expenses. Because Dr Cecily Saunders doesn't talk about financial pain, I bracket this as social pain.
When she speaks about spiritual pain, it can be your belief in God or otherwise. A believer may think why the God s/he believed in, punishes him with pain. A non-believer with pain may see no meaning or purpose in her/his life.
We are all connected to this universe in some form or the other. It may be God for many people, it may be family relationships for some, it may be your connection with the environment, the tree that you see from your window,
You must also realise that these are not standalone domains of suffering. An emotional issue can cause physical pain too. Physical pain also can cause emotional pain and social pain.
All are interconnected...
Yes, it is all interconnected. Pain is not a nerve end sensation, so when you talk about pain, you should be talking about the total experience. And when you think about the experience, it is the suffering that is associated with it.
Do you think during these Covid times, the interconnection of various kinds of pain is more intense, making the person suffer more?
Some 10% to 15% of us are likely to die a sudden death. At least 85% of us go through some illness before we succumb.
When somebody is ill for, say, three months, the loved ones get some time to prepare themselves for the eventuality.
But in the case of a sudden death, it is perfect for the person who dies but the loved ones will be in terrible shock. This results in so much more suffering for those who are left behind. This causes enormous grief.
In all grief, we see complicated grief also where the grief will remain with you for the rest of your life. But with some period, which is usually 6 to 9 months, most people learn to continue to live.
The pain will be there, but you learn to do your work depending on your mental make-up.
In the case of complicated grief, this process of learning to do your work will be difficult. Those with complicated grief may not ever get back to functional life.
I would prefer to call it functional life, and not normal life because if the life before the death was normal, it never returns. What you experience after the death of your loved one, is different.
When a mother with complicated grief will not be able to even take care of her children. This is the stage when the grief becomes a disease, a mental illness.
This kind of complicated grief is much more common in sudden deaths than one happening in a normal time frame.
So, I don't need the Covid experience to tell me that when somebody is snatched away all of a sudden, it results in complicated death.
In the case of Covid, the same suddenness happens to many.
One day s/he might have been fine, and the next day s/he gives a test for Covid. What you see next is an ambulance waiting for you. If s/he doesn't recover, the family never sees her/him again.
Somebody wrote that the only connection that was returned to the family was a cell phone wrapped in a plastic cover.
In the early days, they were not even allowed at the funeral. Nowadays, the wrapped body is shown with the face uncovered, just once to the family. But they are not allowed to touch the body.
Touching the person for the last time also is a part of the healing process.
So, it is a cruel kind of departure, and this causes complicated grief to many people from which they find it difficult to come out.
Do you feel since there is no social interaction for these people with complicated grief, the situation aggravates?
Absolutely. I also want to say that the rituals following a death have several meanings to people.
When the rituals are attended by many people, this gives the person the feeling that s/he is not alone in grief. There are people sharing it, and conversations with the people may make her/him cry, but crying is healing.
So, the rituals traditionally ensured that the person was not alone. In our system, the house will be full of people in the first five days. It means there is no time to think.
When you bring the bones home on the 5th day, a connection is established, and when you take the bones and ashes to the sea or the river to immerse it there, it results in more healing.
All the rituals, including the funeral of the Western culture where people make speeches, are processes of healing.
Now, in the best case scenario, there may be 10 close relatives coming to the house, and may be another 10 will come for the cremation. And that's it.
They all go back home very soon because they are all worried about the virus.
Those who come also do not touch or hug the person in grief.
Yes. Even among those in the house, there is a complete absence of hugs.
Sadly, nobody has the time to do meaningful research on these things. Nobody has the time to even read even if it is there. Because everybody is in emergency mode now.
But we don't really need research to show that this is bound to cause a huge burden of complicated grief, and that is what we are addressing.
Would you be addressing only the grief due to loss, or other pains also?
For example, a friend of mine who was in hospital after he was tested positive for Covid told me that he was so alone and depressed because there was no one to share his fears, and no one to hold his hand when he was scared.
My answer will be yes and no. How many people have died in India so far due to Covid? Multiply that by at least four, and that many people in intense grief are there in the country. But what you can address is minimal.
We are doing two things: we are training healthcare professionals in dealing with Covid from the palliative care lens. We have already trained around 700 people from various parts of the country except Tripura and Sikkim.
What I would strongly recommend is that every Covid treating facility should understand human interaction, and that they shouldn't be only checking the pulse with the pulsometer and oxygen level.
They should also recognise that their PPE is a barrier but they will have to compensate for that.
But how? Give the feeling that someone cares.
One thing that we teach strongly with emphasis is to convey the message that they know you are alone and worried but they will look after you and care for you.
They should also facilitate a connection with the family through mobile phones. The more connection and communication is established, the less lonely the patients feel. They should not say 'Don't cry' because you need to cry to heal.
These are some of the solutions we are training Covid physicians in.
I will say one more thing about the initiative; that we are only piloting it.
And we are counselling people with grief from loss.
We are aware that we are only touching the fringe of a huge problem. The numbers are going to be huge, and our ability to reach out is limited.
This is a pilot. So, we will see what kind of calls come. We will document every call.
Suppose somebody rings up and says, 'I am shut up in this place. I haven't seen my family. I don't know if I will see them. I don't want to live like this.'
'If somebody really says he wants to end his life, we will hand it over to a suicide professional squad.
To answer your question, I will say we will address every issue by the intensity of the grief and the need for intervention.
