Book Extract: A Good Life: The Power of Palliative Care

Excerpted with permission from the publisher A Good Life: The Power of Palliative Care, ‎ Jerry Pinto, published by ‎Juggernaut. 

***

'Take Care of Yourself, Kaki!' 

Late afternoon, and I am standing somewhere in the northern suburbs of Mumbai waiting for Dr Pranjal Fulbandhe, nurse Anikta Mhatre and social worker Swati Baid. The Palcare team turns up in an autorickshaw and scoop me up, dividing the team into two. Founded in 2015 by Pheroza Bilimoria in memory of her husband, the Jimmy S Bilimoria Foundation, also known as Palcare, offers home-based palliative care services in Mumbai. 

On the ride, Dr Fulbandhe says: 'AETCOM is treated as some kind of fun subject. There are classes but nothing that will prepare you for the work, nothing that will prepare you for this kind of day.' 

Is it very tough? 

'Not tough,' she says, 'but tough too. It is like yoga almost, yoga for the soul. If you wanted to help people when you started out to become a doctor, then this is where you should head. That's what I tell people.' 

And then we arrive at a chawl, a typically Mumbai construct, a building in which each family has a separate space, generally one or two large rooms but toilets are shared. 

Before we go up, Dr Fulbandhe warns me that though the patient is aware that he has cancer, he has not been told it is incurable and that no further treatments have been recommended. The family knows. Is this common? I ask though I already know the answer. Collusion is an Indian epidemic. 'Very,' says Sister Ankita. 'We see it as the family's decision whether they are going to tell the patient or not.' 

We enter a one-room-kitchen in which Rama Pawar; his wife Sharada, who is his primary caregiver; his son and daughter-in-law and their child live. Rama himself is lying on a narrow divan against the wall. He seems calm but veering towards the bluer shades of calm. His voice is slow, as if coming through cotton. Dr Fulbandhe kneels down so that her face is on level with his. 

Rama was a poet, a public speaker in his time. 

Dr Fulbandhe tells him that I am also a poet and asks if he would like to share his poetry. He waves a hand emptily. 

His wife says he cannot write these days as his hand trembles. 

Sharada is worried about how little he eats: a couple of chapattis, some varan, and he is done. 'You told me give him omelette, give him besan, but he won't touch it,' she says. 

The patient's stomach seems swollen and tight. He is retaining water and complains of breathlessness. 'He does not have the courage to sit up,' Sharada says. ‘He says he thinks he might get stuck upright.' 

He is still able to make it to the bathroom himself, but in the night, he wakes them up. 

'I tell him: "Look at me. See how I have to get up. I put an elbow on the ground and push myself up. You can do it, try." But he won't do it.' 

The doctor and nurse examine the patient: temperature, blood pressure, blood sugar. All are normal. 

What worries them is Rama's sudden decline. On their last visit, he was sitting up. Now he seems to be confined to his bed. Sharada says that he seems afraid of something, perhaps of everything. Perhaps the bed is a refuge. He has become unusually sensitive to sound. He can't bear the television and no longer looks at his mobile. I wonder if it could be that he is afraid of death, but since no one has spoken of it to him, he is unable to talk about it. 

The team sits with Sister Ankita, a warm circle of women. Perhaps the nurse senses that the fear may be impending death and she says to the family that it may be time to tell him, but the decision is theirs. She offers support: 'We can tell him together.' 

Sharada says that she will consult with the family and let them know. 

'Take care of yourself, Kaki,' says Dr Fulbandhe. 'If you fall ill, how will everyone manage?' 

Sharada was supposed to have a minor operation but she has postponed it. The doctor assured her that she would be home in a week. 'But how will he manage during that week?' 

The team now fears that if he does not get up and change position, he might end up with bedsores. 'Bedsores can be very painful. Oil massages will help avoid them.' 

It seems the session is coming to an end when Dr Fulbandhe says, 'What, Kaki? What are you thinking about?' 

'About him and ...' 

But she can go no further and begins to cry. Dr Fulbandhe moves aside for Swati, the counsellor, who moves in and closes the circle again. 

'We won't lie to you. We won't say he is going to get better. He's not. But we can try and support him as long as he is here, right?' Swati asks. 

Sharada nods. She tries to pull herself together. 

'We all say how much we admire you for all that you do, Kaki, right?” 

Nods all around.

 'Who knows whether we'll be able to manage at your age.' 

Sharada collects herself and speaks. 'Yes, people always say: “How do you manage with this one and your grandchild?" She won't eat unless I feed her. And all this...' 

She puts away her momentary weakness. ‘You were talking about bedsores and all, na? So, I got upset.' 

'We're not saying he will develop them,' Sister Ankita says comfortingly. 'We're saying he could develop them over time if you're not careful.' 

I am impressed by the fact that the team sits on the ground, but most of all, by the time spent and the gentleness of the team. It is this more than anything else that I think I have cherished in all the hours spent with palliative care teams across the country. We live in a transactional world and one of its first casualties is gentleness because it takes time and it takes a psychic energy that we find difficult to spare. To be gentle with each other, we have to be completely present, and this means putting down everything and staying in the moment with the other person. 

Outside, Dr Fulbandhe says, 'I hope they agree to tell him soon. He does not have much time left.' 

I wonder whether the poet knows. Our conversation was held not three feet from his bed. His wife's tears, the urgent whispers, his own reluctance to move, all these seem like signs that he does. 

But I can also see that the web of trust between the palliative care team is held in place by respect. They must empower and support the caregivers but they must also respect their wishes. Anything less would be a betrayal. 

The Love Assumption 

The assumption is love. We assume that parents love their children, that children love their parents and that siblings love each other. We assume that the bedrock of the family is love; and this is so often the case that we find departures from the norm shocking, even horrifying. But illness can strain the bonds of family simply because so much changes when a person is ill, especially when the illness is set to last for a long time.

A caregiver is a paid or unpaid person who helps someone who is ill with the activities of daily living. Ashla Rani, a techie who suffered a train accident that confined her to a wheelchair and is now a trustee of Pallium India, remembers that when she arrived at Pallium for the first time, she was impressed by the fact that they were also interested in how her mother was handling the situation: 'My mother was caring for me, cleaning me, bathing me, feeding me. When we came here, she was asked: "What is your name? How did you come to care for her? How do about this?" When she told them about her chronic backache, they asked: “Will you be able to do this by yourself? Do you need help?" I learned so much from that and I use it in my work here, to keep patients front and centre,' Ashla says. 

I am reminded of this on a visit to Golden Butterflies, Chennai. The NGO reaches out to all children with life-limiting or life-threatening illnesses. 

‘But reaching out to a child means reaching out to the parents, and that means reaching out to the family,' says the founder, Stella Matthew. I see what she means when we set off on a home visit with Sister Saranya and Ramalakshmi who heads the projects team. Dr Sabitha, a volunteer, joins us later. 

Saif is fourteen years old and weighs thirteen kilos, a frail form in a blue T-shirt and a diaper. He is asleep when we arrive but his mother, Safina, is welcoming and calm. Golden Butterflies has been in touch with her for a while now; Ramalakshmi and Sister Saranya are now familiar fixtures. 

'He was a normal child for the first year and a half,' Safina says. 'He sat up, he was saying a few words. Then he had an operation for hernia and the trouble started.' Saif was diagnosed as having Hunter's disease, a rare condition that affects one in 1,00,000 to 1,50,000 male births. 

'I was pregnant with another child when the doctors told me what my son was suffering from and that it would affect his siblings as well,' Safina says. She is a calm and confident woman with a degree in English literature. 'I would have thought twice about another child, had I known.' 

Saif's brother shows signs of Hunter's too, but his is a variant that makes him hyperactive, violent and in need of mood control so that he may attend a special school for the deaf. (Hunter's disease affects hearing too.)
Saif has a severe variation. On the last visit, he had a Ryle's tube inserted to feed him. This visit is to check on the tube. Dr Sabitha turns up and the examination begins. 

Saif sleeps through it all. 

'It has been a long journey,' sighs Safina as Dr Sabitha and Sister Saranya give her boy a gentle going over. They are both pleased to note how well he is being taken care of. There are no bedsores, his teeth are free of caries, his skin is clear. Safina is clearly on top of this, but she admits to having moments when she needs counselling. 

"This is the month of Ramzan,' she says. 'So, I have inner peace. But when it is over, I will need to talk to you.' 

Ramalakshmi nods understandingly. And suddenly I see the privations of Ramzan in a new light; they are not an imposition on the faithful, they are a source of strength. 

'You are managing very well,' says Dr Sabitha, and Safina sighs. Later, I am told that she does the heavy lifting of looking after her two sons, but her husband is by her side. This is so often not the case that I am relieved. Because two are always better than one. 

A human being who is ill just wants to go home to the familiar and the comfortable. Palliative care now works to make sure this is possible in as many cases as possible, hence the emphasis on home care and home visits. But this means that there must be someone who is willing to take over the work. Some families can afford paid help in the form of a nurse or a caretaker, but this is expensive. Many families must learn to take care of the day-to-day operations: cleaning a wound and making sure a tube is not clogged. To this end, training is essential, and the palliative care team must work as if it is making the family and the caregiver an extension of itself. 

Technology can help. Dr Veronique Dinand of Wadia Hospital, Mumbai, says: ‘One of the good things about COVID-19 was that it made Zoom and other platforms popular. We use Zoom to teach patients self-care, to train parents and caregivers for things like how to manage breathlessness using simple exercises, and to train parents in skills like providing gentle physical therapy or positioning a bedridden child to prevent bedsores.' 

Caregiver Burnout 

It is not only the patient who wants to weep and sob. It is also the caregiver who often rides a roller coaster of emotions. She ― and as we have noted, it is more often than not a woman ― is expected at all times to be doing her duty to the best of her abilities, to be on top of everything, to do all this and the other things expected of her because she loves the person. But this love can get corroded over the long haul of an illness. 

And that brings us to caregiver burnout, ‘a state of physical, emotional and mental exhaustion that happens while you're taking care of someone else. Stressed caregivers may experience fatigue, anxiety and depression.”5 Also guilt and anger and a host of other feelings. It's a sneaky thing. You might not even notice you have it and then someone says something, and you find yourself in a fit of rage or a storm of tears or both. 

When Shaista N. tells me her story, we are sitting in her home in Mumbai. Her father is in the room next door, now almost completely bedridden. He has been suffering from Parkinson's disease for close to two decades and his daughter, once an advertising executive, now works from home, selling insurance. She has borne the brunt of caregiving for several years. 

Then she found a support group at the hospital and made friends. It was at one of those meetups that she met another woman, a mental health professional, who had a mother who had Parkinson's. They became friends and began visiting each other. 

'One day, she came over and said to me: “It's okay to be with your angry with Dad.” Immediately, it came to my mouth, “I'm not angry. How can I be angry? He is suffering from this disease the most. How can I be angry?" 

'But she just looked at me and said nothing and I began crying and crying. And I remember thinking, "She has a kind face" and that made me cry all the more. She did not say, "Don't cry", and I remember thinking, why isn't she saying this, why isn't she saying "Don't cry"? Everyone says it. Why isn't she saying it? Now I think she was right not to say it because you have to cry. I cried so much I thought I would vomit. But then it stopped, and I said, "Sorry, sorry." She said, "Strong people also need to cry." And I said, because I was so ashamed I was crying, "Which strong people cry?" She looked puzzled for a moment and said, "Amitabh Bachchan. He cried in every movie.” And I started laughing and it was so good. I don't think I had laughed since the time Papa fell and broke his leg when he tried to walk without the ward boy and ended up in the bed. 

“Then I said, “Shee! I'm shameless, laughing.” And she said, “Would Papa not want you to laugh?” And I began crying again, but when I went into his bedroom, Papa asked, "What were you laughing about?" I told him and he also smiled. I realized that I had not given myself permission to feel anything. I saw that I was sad and I was angry and I missed my old life, my colleagues, going to an office and meeting people and not sitting by the phone with half my attention directed at the other room. She gave me the key: You can cry. You can laugh. It's okay. It's life.' 

~

'A serious illness does not just affect the patient, it also impacts the whole family,' says Digambar Sathe, senior homecare social worker at the Cipla Palliative Care Centre, Pune. ‘As soon as treatment for the patient starts, it's just as important to support the family and caregivers. They play a huge role in the patient's care, and if they're overwhelmed or burnt out, it can affect how well the patient is looked after. Early support helps families and caregivers handle tough decisions, stay strong, and avoid hitting a breaking point. Taking care of the patient and the caregiver goes hand in hand. If the family is prepared for what's coming, it makes the whole journey smoother for everyone.' 

Caregivers find themselves enmeshed in the mechanics of caring. In between bathing and cleaning and assisting with toilet routines, preparing special food and feeding, making sure medications are taken, cleaning feeding tubes or colostomy bags, transporting the patient for tests and visits, and explaining what is going on to friends and family, there is little time to acknowledge the humanity of the patient but even less to acknowledge one's own humanity. 

Dr Ambika Rajvanshi, CEO, CanSupport, says, 'If caregivers are emotionally or physically drained, it's hard for them to give quality care, and they can burn out quickly. Simple things like watching a film or having a meal together can give them a much-needed break and help recharge their emotional batteries. It's not selfish - it's necessary. As healthcare providers, we need to remind caregivers that taking out time for themselves doesn't make them any less dedicated to their loved ones. In fact, it helps them be better caregivers in the long run. We have to remind them that looking after their own well-being is just as important as looking after their loved ones.' 

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Jerry Pinto, A Good Life: The Power of Palliative Care,‎ Juggernaut, 2025. Hb. Pp.272

Pain is fundamental to our existence, signalling what requires our attention. But while pain is inevitable, suffering does not need to be. Palliative care aims to reduce both the pain and suffering associated with serious illnesses.

In this sensitively written book, award-winning writer, Jerry Pinto delves into the realm of palliative care through intimate stories of patients, families and devoted caregivers. Most likely having been a caregiver himself, he writes with a gentle kindness and a sympathy that only one who has been in that role, can see that which remains mostly invisible to most of our communities. With the portraits and the testimonies that he weaves into A Good Life, Pinto transforms the text into a moving exploration of hope and humanity, making it an essential read.

Jerry Pinto is the author of Em and the Big Hoom (winner of the Hindu Literary Prize and the Crossword Book Award for Fiction) and Helen: The Life and Times of an H-Bomb (winner of the National Award for the Best Book on Cinema).His other works include translations from Marathi of the autobiographies of Daya Pawar (Baluta), Malika Amar Shaikh (I Want to Destroy Myself) and Vandana Mishra (I, the Salt Doll), as well as Sachin Kundalkar’s novel (Cobalt Blue). He has also written two books of poetry. Jerry Pinto was awarded the prestigious Windham-Campbell Prize in 2016.