As fatalities due to Covid-19 continues unabated, conversations about death gain relevance. We speak with Dr Sneha Rooh, a palliative physician, who has hosted 32 Death Cafes for the purpose of talking about death.
You have introduced a radically new concept to India in the form of Death Cafés. Could you tell us something about these Cafes and what really happens there?
Death Cafes are places where strangers come together to talk about their experiences and thoughts about death, dying, caring for the dying in a non-judgemental space over tea.
It was a movement started by John Underwood and his mum, and the first Death Cafe was held in their living room. It was inspired by Cafe Mortale and now runs across the world.
I have hosted 32 Death Cafes till date; the last 3 have been virtual. Each Death Cafe is different and is created by the people who participate.
When they come to a Death Cafe, I check in with participants asking them to share their name and what brings them here. I then introduce what Death Cafes are to them and then we collectively make agreements on what makes the place safe for us.
Then I keep a pack of plain sheets on the table and each person writes one or two thoughts about death that have been running on their mind lately or questions they want to hear answers to. Someone steps in and picks a paper that is not written by them and shares their experience about it.
I ask them to focus on lived experiences and not theories and also speak from 'I' perspective instead of generalising things. This goes on for a few rounds and then we end with a reading or song or watching a video.
We have had questions like 'what would you like the last tune playing in your head to be' to ‘what is left unsaid to your loved ones that you’d like to speak now’. Last time we had a nun in Tibetan Buddhism join us and it was beautiful.
Most people are awkward or avoid talking about death. Is it ever possible to have easy conversations about mortality?
Conversations about death are difficult by themselves because of the uncertainty they make us face but our social structures make it all the more difficult.
Changing the subject, shutting a person out, negating questions about illness and death has made us more isolated and ill.
I once held a Death Cafe in an alternative learning space in Hyderabad where children as young as 5 spoke about death so beautifully. They spoke about the death of their pets and one boy spoke about his mother losing a child before him. We would wriggle our hands and take three breaths between each question. We all, even kids, have questions and reflections about death.
What is the biggest fear harboured by most people about death?
I think there two or three that are common - worrying about who is left behind and how they will manage, about being dependent on others and the uncertainty in general. These are from heterosexual people.
In Rainbow coloured Death Cafes, we have non-heterosexual people sharing concerns about having to face discrimination by health care providers and family and having to go back to the closet, about their partners not being allowed to stay with them or what will happen to their bodies when they die (more in case of transpeople, with regard to where they will be buried or if last rights will be denied to them).
How do you equip yourself psychologically and emotionally with sudden deaths or prolonged illnesses?
There is no way really when it comes to sudden deaths. One has to just tend to the process of grief and not be in a hurry to get over it. Grief is a natural healing mechanism and should be respected.
Prolonged illness gives one time to resolve issues with the family, check in with oneself about unfinished businesses but again now the capacity of the body might be compromised.
Palliative care is an interdisciplinary teamwork. We have physicians, nurses,taking care of pain and other symptoms, psychologists helping them resolve issues that are to do with anticipatory grief and make sense of their lived life, social worker helps the family understand the situation and cope with the changes, physiotherapist helping with movements and quality oflife and chaplains helping the person transition spiritually.
A whole team and an understanding family are required and even then it’s not easy. Most of us don’t get a chance to make use of this or end up discussing teats and reports till the end and never get to the heart ofthe matter.
How do you cope with grief and bereavement?
Bereavement starts from the time the diagnosis is given. We think that only loss of life is a loss, which it is, but for the family bereavement starts from the time the diagnosis is made, for the person in question its loss of limb, loss of function, loss of income,loss of social role, loss of role and position in the family, loss of intimacy in relationships, loss of friends, loss of dignity.
For the family too its multiple losses and these come under anticipatory grief and can be addressed in stages by the treating team. How the news is broken plays a very important role in how the patient and the family process this anticipatory grief and how they feel after the death during the bereavement stage when they assess if they did enough for their loved one.The therapeutic relationship with the patient and the family and the rapport one builds throughout the period of illness and caring goes a long way. Facilitating conversations among family members during the illness is a greatest gift a physician or health care professional can give to make the grieving process and bereavement easy.
After the death, it’s the responsibility of the team to have a bereavement protocol in place. It starts with the way one is informed about the person’s death and how the person’s body is respectfully handed over with as little hassle as possible, then attending funeral is a choice that varies with each institution. Bereavement call after 14 days and bereavement visit after one month is what we follow. A few facilities celebrate Memorial Day twice a year to call the family members. Pamphlets and educational material go a long way when put around in the hospital or clinic premises.
Grief as a processis not as clear cut, as Elisabeth Kübler-Ross (a Swiss-American psychiatrist, a pioneer in near-death studies) put it - its loopy, its repetitive and needs to be given time. It needs to be honoured, I like the work of Stephen Jenkinson (author and storyteller who has worked in palliative care for decades) in this regard.
What is your perception about death? Have you ever considered how you would like to breathe your last?
Yes I have thought about it many a times and it changes over time. I am scared of dying before having lived fully, so in a way I am scared of wasting my time or living inauthentically, something I have to keep checking myself for. I am scared of being dependent. I am scared of seeing people become bitter to have me around when caring for me, I’ve seen that happen.
Ideally I would like to be an old woman who has lived life well, experimented, learnt and loved, who has been true to her desires and hopefully modified them over time. I would like to be at peace in my body, mind and spirit when I die and have people who love me be around me as they help me be more in touch with my heart as I die.
Your Facebook account introduces you, among other things, as a death researcher? What research are you doing on death and what has been your learning?
It doesn’t say. However, I was researching on what is a good death according to the terminally ill in a hospice in Telangana, but that didn’t come to be published because of internal clashes. I however learnt a lot with those 16 in depth interviews. Most important learning was that 13 out of 16 people used the word "friend" when describing what kind of a doctor they wanted to care for them at the end of their lives.
If someone is severely depressed or terminally ill and wants to die by suicide, what advice would you give the individual?
They are two different things -
If someone is depressed (clinically diagnosed) then I’d suggest that medical and non-pharmacological approaches are available and would urge them to seek help because life can be better.
If one is terminally ill and wants to die then I would check who the palliative care physician is, what relationship do have with their family and friends and what is left unspoken. In case palliative care is adequate and still the person wants their life ended, I would support them to seek euthanasia where it is available as I think dignity in death is everyone’s right. However, we have not reached there. With less than 2% people receiving palliative care in India we are not yet answerable to our patients. They deserve to get optimal palliative care and good quality of life before they choose euthanasia. Please note euthanasia is different from 1. Physician Assisted suicide 2.Withholding of life support 3.Withdrawal of life support and 4.Suicide.
PatientsEngage Note: Euthanasia is not legal in most countries, although you can create advanced medical directives as regards withdrawal and withholding of life support. This is complex legal and ethical topic and there are many perspectives and aspects to this. We do believe that better person centred care and palliative care options need to be pursued
What does ‘good death’ really mean?
It means different things for different people. Palliative care promises person centeredness so we need to ask each person what is a good death to them.
A simple Google search will show a study with 11 characteristics of a good death but I would say ask the patient.
Dr Sneha Rooh is a palliative physician and founder of Orikalankini. She consults in setting up of Palliative care units and also trains the staff. She has been facilitating conversations around death, dying and caring for the dying through Death Cafes in India and Online.
