My learnings from Palliative Care – a series: Let’s talk about death. What’s that?

Pouruchisti Wadia is Associate Program Director, Romila Palliative Care at SNEHA

When I started working in the field of palliative care after working for more than a decade on gender based violence, I did not know the “p” of palliative care. Four years down, I am a firm and passionate believer and keen to share. Thanks to our dedicated team at Romila Palliative Care (RPC) and the health care professionals of the Mumbai Palliative Care Network (MPCN) who have dared to get their “heart” involved and shown me how it is to care.

Part 1- Let’s talk about death. What’s that?

Beginning the series talking about death, really? Yes, because most of us spend our lives in denial of this inevitable truth. Most cultures, especially in India think it is inauspicious to talk about death. A 2017 study by the Tata Institute of Social Sciences revealed that the reason behind it is because death is considered a bad omen and that discussing it means inviting it. [1] But isn’t palliative care supposed to start from diagnosis and not limited to helping patients in the end of life? Sure, but unlike the standard medical approach of doing everything possible to save a life – and death being a failure – Palliative care affirms life and considers dying a natural process. It does not intend to hasten or postpone death. It is also interesting to note that doctors who are constantly working towards saving lives and avoiding death are actually not taught about recognizing the signs of impending death. My colleagues from palliative care call it the missing chapter in medical education on death and dying.[2]

How does acknowledging death and normalizing it help? It’s important because it is only then will we focus on improving our quality of life and the quality of death. Life is so unpredictable. One fine day, you could be told you have a life limiting illness. Only then do we start valuing each day and appreciating the things we took for granted. Do we want to wait for this to happen to us? I was always a very contented person, appreciating what I had. But now I value being healthy most of all. Though I still haven’t reached the stage of getting up every day with a smile, happy to be alive :)

If we think of death as normal we could reflect on what kind of death, we would prefer and discuss it with our family. When my dad was in the hospital and the doctors asked us if we wanted to put him on life support, my mother and all five of us siblings unanimously had no doubt that he would not want that. I had no exposure to palliative care then but the truth was that none of us were uncomfortable with making that decision. The reason being, that my dad who had always been full of life had clearly communicated to us that he did not want to suffer in an ICU like one of his closest friends had just done. Today we have the option of making a living will [3] but, I am not going into the legalities of that. Just to share that we can, in advance, document how we would like to be treated, should we ever be in a position not to be able to communicate that.

So how does palliative care focus on trying to improve quality of death? It helps family members realize that focusing on prolonging life and trying to prevent death comes at a price. The loved one is attached to machines away from family. Given a choice, wouldn’t the person, want to be surrounded by loved one’s saying their thank yous, and forgive me’s. It helps family members to know the wishes of their dear ones and respect them.

None of us can choose when and how we will die, but surely if we know in advance, when the time is near, we would want to go peacefully. Not all of us are lucky to die in our sleep after having lived a full life till the end. But it’s important to clarify here that, stopping aggressive treatment does not mean we let the person just be and leave him/her to die at home. The care provided ensures that the patient has no symptoms, especially pain to deprive them of a peaceful death. If the patient is unable to eat by the mouth, a ryles tube may be inserted, but every decision to reduce distress is with the consent of the patient. There are no standard rules applied and often goals of care for each patient are unique, depending on the unique condition and life situation of the patient.

In hindsight one of my favorite Bollywood movies, “Munnabhai MBBS” has a lot of learnings relevant to the field of palliative care. They will definitely help to make such a serious issue more relatable. For instance, when the protagonist talks about Anand bhai, one of the catatonic patients in the hospital, he says, “Don’t think of him as a mere body who is dead, he is a live human being and deserves all the respect. Don’t presume he cannot hear or understand what you are saying”. Often family members are encouraged to touch and talk to the patient when he or she is at the last stage and what they need to say would be unique to their relationship and the patient’s concerns, but it sure makes a huge difference. We at RPC have actually seen the difference it can make when the whole atmosphere in the room changes, when this actually happens.

I would like to end with the quote of Dame Cicely Saunders the founder of the modern hospice movement, which all of us can probably relate to. “How people die remains in the memory of those who live on.” I rest my case. 

[1] When Talking about Death is Taboo: How can grieving people heal?

[2] Touching hearts gently! Book by Dr. Priyadarshini Kulkarni

[3] For more information on the living will: https://www.palliativecare.in/living-will/