It was February. I stood barefoot on the beach, watching the waves rise and fall mightily, roll over my feet gently and then immediately return to meet the vast ocean. The evening sun spread its colours across the sky. Tiny boats dotted the horizon, returning to the shore. The smell of the sea filled my nostrils.
I wondered how this came to be my life. How did I end up giving birth, then losing my 4-year-old daughter to cancer (brain tumour) after 18 months of struggle (of which 14 months were in palliative care)? How did my family and I survive the trauma?
How did I come to stand on this beach without Ira? 

I had noticed minor tremors in Ira’s left hand in March 2017. Initially it was attributed to motor development issues. After a few visits to the paediatrician and the neurologist, and a scan later, the diagnosis was confirmed—thalamic glioma.
A surgery was imperative as the tumour pressed on several parts of the brain. All through, from diagnosis to surgery to post-surgery, hope remained a constant but its face kept changing. From hoping that the tremors would be non-worrisome, to thinking that the surgery would have no complications and to assuming that we’d be back home in 15 days. Ira’s treatment in the hospital lasted for 2.5 months.
A major brain surgery and several post-operative complications later, Ira was in a state of poor consciousness. She had lost her speech and her ability to register and respond to stimuli around. In medical terminology, she was in a vegetative state. With each passing day, hopes of her recovery diminished. Our hopes for cure and recovery changed to hopes for comfort and relief for Ira.

As a mother who went through it, I think there is confusion about hope during palliative care. It is not about giving and keeping false hopes about recovery or cure. Although, in our case, the acceptance of Ira’s condition took time to settle in, we learnt to keep any false hopes about her recovery at bay.
We need to understand and accept the prognosis and course of treatment. There is no need to dismiss or discard hope. It just needs to be realistic. Focus on short-term goals and expect practical outcomes. Right through her palliative care, with all our love and compassion, we worked to provide as much comfort at home and as much relief from her neurological problems as possible.
If a terminal patient or family member makes long-term plans or envisions a future with all, it is important for the medical and allied professionals to gently help them understand the prognosis. And tell them what hopes that they can realistically harbour. 

Hope in palliative care, as complex as it may appear, is about several aspects except a cure. It should be about a good quality of life in the time left, reconciliation and closure with family members and friends, avoiding discomfort during the care, and being cared for with utmost love and selflessness.
Though the tragedy of loss and the grief of death always stared us in the face, our family was content that distressing symptoms were reduced and managed at the earliest. As her mother and caregiver, I felt that Ira’s troubles, malaise and anguish were far greater than mine, and this gave me the strength to keep going and to care for her with even more compassion and love.
Yes, hope is intangible. It will not just bounce into your life and light it up like fireflies at night. Find it within. Hang on to its threads as if your life depends on it, because it really does.  

Pratima Mehta writes a blog about Ira’s journey, how the family coped and practical aspects of care.

​I started looking after Madhav following a phone call.
“Can you help my mom? My father is a dementia patient. My sister and I live out of India. My mother has difficulty managing him. Can you make home visits?”
With Eknath too, the starting point was a call. However, the caller was clueless about the diagnosis.
“Can you help my uncle?” Sure! What sort of help? “I don’t know. I need your guidance.”

Both Madhav and his wife have chronic medical conditions. He has dementia and heart issues. She has kidney problems, diabetes and blood pressure.
Their daughters who live abroad try to manage things remotely. There is no other family support.
The first thing the wife told me was, “He does not remember anything, does not want to do anything and doesn’t co-operate. I don’t understand why he is doing all this to me. Why can’t he just behave properly? He was okay until a few months back.”
“You do know that he has dementia, right?” I tried to make that question sound as gentle as possible.
“Yes, I know that. That is okay. What about the other things he keeps doing that trouble me?”

Eknath is unmarried. He was a professor in a small town, lived alone, self-sufficient. He has always been on good terms with his siblings and their children. No longer working, he was keen to spend the rest of his life in that small town that had been his home for so long. But fate had other plans for him.
Worried by his repeated falls at home, his neighbours requested his nieces and nephews to take him to a place closer to them. Thus, after 40 years, he ended up in the big city of Pune.
Investigations suggested the beginning of Parkinson’s. One of his nieces volunteered to accommodate him in her house. But he was not comfortable there. He did not want to be an extra burden as his brother was already a Parkinson’s patient and needed constant attention.
Eknath became aloof and would not co-operate. They decided to let him to stay separately, with someone visiting him frequently.  This arrangement lasted for a few months. However, as his symptoms worsened, it became difficult. 
When I visited him, his cognitive abilities were intact, he could recognise people and he was alert.

In another part of Pune, as I started working with Madhav, I realised that many of his cognitive abilities were affected. He could not comprehend what he was reading, nor could he complete any activity on his own. But I decided to make the wife my first priority.
We had a few issues in the beginning, but I managed to develop a good rapport with her by and by. I had to make her understand the whole spectrum of dementia and how to cope with his behaviour.
In the course of our conversations, I discovered that apart from watching TV and playing solitaire on the laptop,  she could draw well and liked to solve word puzzles.
She did have some drawing material lying around but those were in a bad shape. She was not very keen to spend on her hobby, but I persuaded her to get some new stuff and arranged for some puzzles. Soon, she got going and was happy in her own space.  

In the case of Eknath, it took some coaxing before Eknath agreed to employ a caregiver for the day. “I don’t want anybody in the house, I can manage myself,” he was still the proud, independent professor.
Eknath had not been to a doctor for more than two years. I suggested a visit to the neurologist. Tests confirmed early dementia. Marking a new phase in his life, Eknath started taking medicines and slowly got used to the caregiver.
There were more falls and serious issues with hygiene and nutrition. The caregiver had to start staying nights, too. “This is an invasion on my privacy,” Eknath protested. We were all helpless. We pleaded with him to try it out for a few days. He agreed reluctantly.
I helped set some rules and regulations for the caregiver, who had had no professional training. I also used my weekly visits to build a good rapport with Eknath. We would do a lot of activities together—games, puzzles, drawing, painting, craft work and so on.
They all cared for him, but the nieces and nephews could not spare too much time from their respective lives. Except for his siblings and some old students, he had no social visitors.
Life appeared to be under control. 

Meanwhile, Madhav  was having his good days and bad days. Did they have any doctor on call to help them out, in case …. No! Any relative? “Well, I have a cousin. She is old. But she can come when needed.” That did not sound very promising.
I was constantly in touch with Madhav’s daughters. They arranged for a local doctor to come home and guide them. We also managed to locate a younger member of the extended family, who was willing to come whenever Mrs Madhav needed any help. I gave them a few tips on making optimum use of the support system now in place. When to call for the doctor, when to hospitalise, how to manage the caregiver and so on.
I helped them prepare their home for the long-time care of a dementia patient—caregivers, Fowler bed, essential medicines. I also got them to involve a step-down centre where he could be admitted for symptom management. They also engaged a palliative care physician. I involved the family in long discussions with the experts—what to expect, likely difficulties and how to manage those.
“How do you want your father to be cared for?” I asked both the daughters.
“Do everything possible,” one said.  “I want him comfortable,” said the other. Two different perspectives. As it happens very often, I knew this conversation would be long and slow.
“Where do you want your father to be? At home or in a hospital?”
“Home, of course.” Mother can manage him best at home.
Initially, the daughters were unsure about involving the mother in the discussions. What would she know? Well, she surprised everyone. During the discussion with the palliative care specialist, Mrs Madhav clearly demonstrated she was now assessing the situation objectively and was ready to cope with comfort care. Both the daughters also concurred that comfort and quality of life were important.
All these discussions got the daughters worried.
“Is father so ill? Should we come down to see him? We want to be there when he is really bad and when mother needs us most,” they told me.
“I understand that,” I told them. “But how about coming now? When your father can still recognise you? You can spend quality time your parents. You will always cherish those memories, whatever the future holds.”

One day, Eknath had a nasty fall. That necessitated a surgery followed by another. Old difficulties like incontinence, hygiene problems and behavioural issues started worsening. A local doctor was arranged to take care of his physical symptoms .
Meanwhile, the need to provide constant care day and night took a toll on the caregiver. He suffered a burnout and the quality of care dropped. It was time to look for a more lasting solution. That triggered a debate among the members of the family.
“Why not keep him in an assisted-living centre? He will be well cared for.”
“But for how long?”
“Maybe he should move back to his hometown? That’s what he wants.”
The discussions went on until they decided to keep him in a centre under medical supervision. 

The journey continues. Madhav’s daughters have already come home more than once and have spent time with father. As he continues to move away from them in body and spirit, they are more in control of what is happening.  Mother and daughters are more at peace.
At the centre, Eknath’s health has improved slightly. They have started him on physiotherapy. There are people around he can interact with. At the request of the family, I have been regularly visiting him at the centre. He repeats one question, “When do I go home?” Are you not comfortable here? “Yes, I am. But I want to go home.”
Eknath’s family and well-wishers are still discussing. There are some tough decisions to take. Everyone means well. Everyone wants a say.

When I met her the first time, she was on a wheelchair, in severe pain and was being treated for pancreatic cancer for nearly three years. Her husband, her primary caregiver, was with her.
I studied her papers and examined her. I asked her if her ascites (fluid in the abdomen) was causing her discomfort. She was willing to manage.
The next contact was about 12 days later, when the husband called. She had been recommended an MRI. He asked me if it made sense to push her through yet another MRI. Then he came over to talk to me .
Their two sons were abroad. Financially, they were comfortable. They lived on the fourth floor and the building had no lift. Every hospital visit meant maneuvering her down the stairs. He was willing to do that. But to do that every time? Won’t it be difficult for him to manage her at home?

I briefed him about the potential challenges of at-home care. Perhaps it was time for him to have a frank conversation with her doctor about the prognosis?
One week later I got a request to visit the patient at home. The doctor had said that her treatment was now at a palliative phase. Thanks to that, the husband had a better idea of my role as a palliative care doctor.
I examined the patient. It was obvious that her disease was progressing rapidly. She looked jaundiced. No, she still did not want her ascites to be drained. She looked at peace, pretty even.
She had just one fear. Occasionally, when she got up, she felt as if she was about to fall. Now that I was with her, I encouraged her to try and get up. With my help, she did.
She was stumbling. It was clear to me that she was wobbly. After safely putting her back in bed, I suggested several measures. She was not to be allowed to get up and walk without support. Never. And she needed a hospital bed with rail guards.
His brother walked with me as I took the stairs down. He was not sure if the sons had the correct picture. I suggested he could share my number with one of them and I would be happy to brief them. He was relieved.
That evening, before I could speak to the son, I got a call from the brother. The patient had had a fall. They had rushed her to the ICU in a nearby hospital.

While the immediate injury was being taken care of at the hospital, I got a call from the son in the US. I briefed him fully and answered his questions. He said he was coming to India towards the end of the month, three weeks away. If he wanted to spend some quality time with his mother, I suggested he should reach sooner.
The next call I received was again from the same son but after he had reached the hospital in Pune. He had met his mother and she had recognized him, smiled at him. He was happy.
A couple of days later, the husband’s brother called again. She was not doing well at all. The second son too was on his way.
He too got to meet mother, but she was already on ventilator. The family had a discussion with the doctor. How long should she remain on the ventilator? The sons decided to wait until the next evening.
But she did not wait. She passed away the next morning, in the ICU. 

A few days later, the son spoke to me.
“We knew her disease was serious. She was so keen to be at home. Dad was trying to make it possible. I desperately wanted her to get comfort care, like what we get in the US. Then after all those months of suffering, she got to meet you. Thank you for asking me to come down sooner than I was planning to. I got to meet her, spend some time with her.” He was sobbing bitterly.
I told him that all I did was try to make the journey smooth. For the traveler and her dear ones who were around to see her off. She was gone. But those moments together, those memories would stay.    
When it comes to a terminal condition, is it possible to prognosticate the end with any certainty? Would the ending have been less painful for all, had there been franker conversations sooner? Could they have then made better use of the time with her?

These days we have several days dedicated to one thing or the other. Tomorrow, October 12, 2019, is earmarked for something that concerns life and death, the comfortable, dignified transition from one to the other and life thereafter. The second Saturday of every October is World Hospice and Palliative Care Day.
Unless you catch a stray headline or a post brushes by while you wade through social media, you may miss the significance of October 12, 2019. Unless you suffer from a chronic illness or you care for someone who does, or you help both as a palliative care professional. In which case, it is a day that would probably mean the world to you.
This is the right occasion to remember two women who were strong enough to be compassionate. They were both discouraged from the medical profession when they started their education. Then the world plunged into war and they boldly went into the uncommon profession of compassionate care. They deliberately chose to sit next to and hold the hand of pain and misery. So that they could teach an uncaring world to understand and manage both, and death, better.
Meet Dame Cicely Saunders and Dr Elisabeth Kübler-Ross, the Pioneers of Compassionate Care.

Cicely Saunders founded the first modern hospice (home for the care of the dying) and, more than anybody else, was responsible for establishing the discipline and the culture of palliative care. She introduced effective pain management and insisted that dying people needed dignity, compassion, and respect, as well as rigorous scientific methodology in the testing of treatments.
Saunders introduced the idea of “total pain,” which included the physical, emotional, social, and spiritual dimensions of distress. A good listener, she paid systematic attention to patient narratives.

Born in 1918, Cicely Mary Strode Saunders went to school when she was 10. Taller than the other girls, she felt she never fitted in, which, she said, gave her a feeling for people who were outsiders. She also suffered from a painful and slightly crooked spine, and was made to lie flat on the floor for 40 minutes a day.
Her father disapproved of her desire to be a nurse, and so instead she went to study at Oxford. After the outbreak of the second world war she abandoned her course and defied her parents' advice, enrolling as a student nurse at St Thomas' Hospital in 1944.
However, her back was still painful, and she was advised to quit nursing. After returning to Oxford for a year she gained a “war degree” and qualified as a social worker, or what was then called a lady almoner, in 1947.

​After the death of her father and  some close friends, she fell into a state of “pathological grief”. She felt that, at last, she knew what God had called her to do, which was to build a home for dying people, where scientific knowledge should be combined with care and love.
Saunders was advised by a surgeon that people wouldn't listen to her as a nurse, that doctors desert the dying, and that she could best help dying patients by becoming a doctor. At the age of 33, she was accepted as a medical student at St Thomas' Hospital.
After qualifying, she obtained a research scholarship at St Mary's Hospital, where she studied pain management in the incurably ill, and at the same time worked at St Joseph's, a hospice for the dying poor, run by nuns. 

By late 1959, she had drawn up a 10-page proposal for a hospice. Building work started in 1965. The hospice contained 54 inpatient beds. The first patient was admitted in 1967.
During her 34 years as Medical Director, Chairman and Founder/President of St Christopher’s Hospice, Saunders was also a trustee of a number of grant-giving trusts.
She believed that more research was needed to support this growing speciality of palliative care. “We need one really serious research foundation to set standards for the world. Also, the hospice movement has largely concentrated on cancer; we need to look at other things, at what we can do for people with strokes and motor neuron disease. We need to go on learning so that in 10 years’ time we are doing things better than we are now.” 

In 2002, in her early 80s, she became the Founder Trustee and President of The Cicely Saunders Foundation (now Cicely Saunders International). The Cicely Saunders Institute opened in London in 2010. It is the first institution in the world where researchers, practitioners, teachers and caregivers are brought together under one roof, creating a complete multi-professional environment.
In 1987, her work contributed to the decision by The Royal College of Physicians to recognise palliative care as a new medical speciality. She held over 20 honorary degrees from the UK and overseas, and earned several awards.
She was made a Dame of the Order of St Gregory the Great by His Holiness The Pope. Dame Cicely was made a Dame of the British Empire in 1980 and was awarded the Order of Merit by Her Majesty the Queen in 1989.
Dame Cicely Saunders developed breast cancer but continued to work, even from her deathbed. She died at St Christopher’s on July 14, 2005.

​I am sure that we cannot make rules but that we must try and deal with each person individually. Our patients do not know the nature of the hospital when they come, and many do not ask a leading question at any time. As we almost always leave them to take the initiative, questions of their diagnosis and prognosis are not discussed. Our impression is that many of these people do realise at the end that they are dying and are able to accept the fact peacefully and quietly. Some like to talk of it, but others do not. Some, on the other hand, appear to keep their hope of recovery to the end.
There are many, however, who do ask questions. A very few ask directly if they have cancer, for I think that by this time the actual diagnosis has less significance for them. Some wait until they know us well: a surprisingly large number ask on their first interview.
I find that if my first answer is a rather guarded one, then the patient almost always goes on to give me a lead if he has a genuine desire for knowledge and shows me something of his real worries and fears and also of his ability to face up to a more direct and honest answer. Most of those who ask really want to know; very few indeed are unable to face the answer.
The final truth may  only come out in a series of talks. I have seen many whose real fear was not of cancer, nor of death, but of chronic illness, of pain, or of the uncertainty that of comes of deception. If, without taking away all hope of recovery, one is yet able to bring the idea of death forward as a strong possibility, some of the patient’s real fears can be brought into the open and we can help him to deal with them. Many have expressed their gratitude for the truth at last, almost all say that they are not afraid, many accept spiritual help, some beginning to understand it apparently for the first time in their lives. Almost all grow in patience and courage until they die.
Relatives often ask that a patient should not be told, but they accept our assurance that while information will never be forced on patients, it will be given if they really ask, and that, when they do realise the truth, we will be able to help. I would like to assert most strongly that much good can come in some cases of the patient’s knowing the truth, if at all  times those telling it to him are trying to “speak the truth in love.” 

Elisabeth Kübler was one of the triplet girls born in Zurich, Switzerland, on July 8, 1926. Though she weighed only two pounds at birth, she credited her survival to her mother's attention and love.
At age 5, when she was hospitalized with pneumonia, Elisabeth witnessed the peaceful death of her roommate—her first experience with death. On another occasion, she watched a neighbour calmly reassuring his family as he prepared for death from a broken neck. Such experiences led her to believe that death is but one of many life stages and that the dying and those around them should be prepared to face it with peace and dignity.
Developing an interest in medicine at a young age, Elisabeth encountered intense resistance from her father about her career aspirations. He told her that she could be a secretary in his business or go become a maid.
When Elisabeth was 13, the German army's invasion of Poland marked the beginning of World War II. She volunteered to help the Polish war victims. She first worked as a laboratory assistant in a hospital for war refugees, and then in 1945, became an enthusiastic activist with the International Voluntary Service for Peace.

While still a teenager, she worked in France, Poland, and Italy, rebuilding communities devastated by the war. Just after the liberation of Europe in 1945, she visited Majdanek, a concentration camp, where she met a girl who had been left behind when the gas chambers would not hold another person. Rather than remain bitter, Elisabeth recalled, this girl had chosen to forgive and forget. The girl said, "If I can change one person's life from hatred and revenge to love and compassion, then I deserved to survive." There were images of hundreds of butterflies carved into some of the walls at the camp. The butterflies—these final works of art by those facing death—stayed with her for years and influenced her thinking about the end of life. She decided to spend her life healing others.
Elisabeth began pursuing her dreams to become a doctor in 1951 as a medical student at the University of Zurich. A year after she graduated, she married and moved to the US. After an internship at the Community Hospital in Glen Cove, Long Island, she went on to specialize in psychiatry, becoming a resident at Manhattan State Hospital.

In 1962, she moved to Denver, Colorado, to teach at the University of Colorado Medical School. She had been disturbed by the treatment of the dying throughout her time in the United States and found nothing in the medical school curriculum at the time that addressed death and dying. Filling in for a colleague one time, Elisabeth Kübler-Ross brought in a 16-year-old girl who was dying from leukaemia into the classroom. She told the students to ask the girl any question they wanted. But after receiving numerous questions about her condition, the girl erupted in anger and started asking the questions that mattered to her as a person, such as what it was like to not be able to dream about growing up or going to the prom.
Moving to Chicago in 1965, Kübler-Ross became an instructor at the University of Chicago’s medical school. A small project about death with a group of theology students evolved into a series of well-attended seminars featuring candid interviews with people who were dying. Building upon her interviews and research, Kübler-Ross wrote On Death and Dying (1969), which identified the five stages that most terminally ill patients experience: denial, anger, bargaining, depression, and acceptance. The identification of these stages was a revolutionary concept at the time, but has since become widely accepted.
Life magazine ran an article on Kübler-Ross in November 1969, bringing public awareness to her work outside of the medical community. The response was enormous and influenced Kübler-Ross’s decision to focus on her career on working with the terminally ill and their families. She stopped teaching at the university to work privately on what she called the “greatest mystery in science”—death.

During her career, Kübler-Ross wrote more than 20 books on death and related subjects. She also travelled around the world, giving her “Life, Death, and Transition” workshops. Funded by the profits from her books, workshops, and talks, she established Shanti Nilaya, an educational retreat, in Escondido, California, in 1977. Around that same time, she formed the Elisabeth Kübler-Ross Center, which was later moved to her Virginia farm in the mid-1980s. Working with AIDS patients during the early days of the epidemic, she tried to create a hospice for AIDS-afflicted children, but dropped the plan after encountering much opposition.
For one who wrote so extensively on dying and death, Kübler-Ross’s transition from this life was not a smooth one. She retired to Arizona after series of strokes in 1995 left her partially paralyzed and in a wheelchair. “I am like a plane that has left the gate and not taken off,” she said, according to an article in the Los Angeles Times. “I would rather go back to the gate or fly away.”
She died on August 24, 2004, of natural causes, surrounded by friends and family. In 2007, she was inducted into the National Women’s Hall of Fame for her work. 

Shortly after I was accepted by [the hospital], where I was put in charge of the psychopharmacological clinic and also did liaison consulting for other departments, including neurology, I was asked by a neurologist to check on one of his patients. I spoke with the patient, a man in his twenties, who was supposedly suffering from psychosomatic paralysis and depression, and determined instead that he was in the later stages of ALS, or amyotrophic lateral sclerosis, an incurable degenerative disorder.
“The patient is preparing himself to die,” I reported.
The neurologist not only disagreed; he ridiculed my diagnosis and argued that the patient just needed some tranquilizers to cure his morbid state of mind.
Yet days later the patient died.
My honesty was contrary to the way medicine was typically practiced in hospitals. But after a few months on the job I noticed that many doctors routinely avoided the mention of anything to do with death. Dying patients were treated as badly as my psychiatric patients at the state hospital. They were shunned and abused. Nobody was honest with them. A cancer patient might ask, “Am I dying?” and the doctor would reply, “Oh, don’t be silly.”  That was not me.
But then I do not think many hospitals had seen many doctors like me. Few had experience like my relief work in the war-torn villages of Europe, and even fewer were mothers, as I was. Plus my work with schizophrenic patients had showed me there was a curative power beyond drugs, beyond science, and that is what I brought each day to the hospital wards.
During my consultations, I sat on beds, held hands and talked for hours. There was, I learned, not a single dying human being who did not yearn for love, touch or communication. Dying patients did not want a safe distance from their doctors. They craved honesty. Even the most suicidally depressed patients could often, though not always, be convinced there was still meaning left in their lives. “Tell me what you’re going through,” I would say. “It will help me to help other people.”
But, tragically, the worst cases—those people in the last stages of illness, those who were in the process of dying—were given the worst treatment. They were put in the rooms farthest from the nursing stations. They were forced to lie under bright lights they could not shut off. They were denied visitors, except during prescribed hours. They were left alone to die, as if death might be contagious.
I refused to go along with such practices. They seemed wrong to me. So I stayed with my dying patients for however long it took, and I told them I would.
Although I worked all over the hospital, I gravitated toward those cases considered the worst: dying patients. They were the best teachers I ever had. I observed them struggling to accept fate. I listened to them lash out at God. I shrugged helplessly when they cried out, “Why me?”  I heard them make peace with Him. I noticed that if there was another human being who cared, they would arrive at a point of acceptance. These were what I would eventually describe as the different stages of dying, though they apply to the way we deal with any type of loss.
By listening, I came to know that all dying patients know they are dying. It’s not a question of “Do we tell him?” or “Does he know?”
The only question to ask is: “Can I hear him?”

Dr Abhijit Dam spent a decade in critical care before turning to palliative care. He was a staunch atheist before turning deeply spiritual. The founder of the hospice, Kosish in Jharkhand. transitioned from “treating” to "healing". Here he talks of spirituality and compassion.
Also, after the interview, a case for spiritual care as an essential nursing function.

Why did you take up palliative care?
Dr Abhijit Dam: During my days in medical college, I was fascinated with intensive care. As my career progressed from general medicine to anaesthesiology to intensive care, I was keen to defeat death. For me, death signified a failure of my efforts.
After more than 10 years of trying to kill death, I realised that in critical care, more often than not, we were prolonging the process of dying (and making it more painful) rather than saving lives.
People die lonely deaths. Often the last image your brain registers when your eyes flutter open for the last time is that of a nurse or ward boy or a sweeper, while your family and loved ones wait beyond the door, a few feet away, not allowed to be with you. You end up paying through your nose for a painful, undignified and lonely death.
I believe that the poor, who cannot afford medical care, die a more meaningful and dignified death at home with their loved ones around, holding their hands, while they exit from this mortal world.

When did you get into palliative care?
I was at the Bokaro Hospital when I first suggested that the hospital should start palliative care services. The hospital did not agree; my friends in medicine snickered behind my back.  
Then, in 2006, I chanced upon Eastern and Central European Palliative Care Task Force (ECEPT). They were offering training opportunities. I applied and Prof. Jacek Luczack, the founder of modern palliative care in Poland and the President of ECEPT selected me. He even arranged free food and accommodation for me. He graciously helped me overcome the language barrier by getting me an interpreter.  
It was a beautiful learning experience. I finally found my love in palliation. I consider Prof Luczak to be my guru. In 2009, I went back, thanks again to my guru. This time I spent one month at the Warsaw Hospice for Children. The nurses would drive nearly 300 km just to visit one sick child. That was devotion! I cherish those memories.

How were you initiated into spirituality?
I was an atheist until about eight years ago, when a life event made me seek refuge in God. That's when I realised my stuttering inadequacy in handling religious and spiritual issues raised by my patients. I was supposed to be a Hindu, but I had no idea of my religion. How was I going to help my patients?
So, I undertook a one-year course in Advanced Vedanta from Chinmaya Mission. Then I completed a six-month course in Contemplative and End-of-life Care conducted by the Naropa University, USA. This reinforced my conviction about the power of unconditional love and empathy.
Personally, I have found my spiritual and religious experiences to be gratifying. It has moulded my personality in a positive manner. And it has had a positive impact on my work.

Do you have to be spiritual to be compassionate? Or vice versa?
Every person is spiritual. Spirituality is anything that gives one a sense of meaning and purpose. Compassion is also something that we already possess. We just need to recognise it and then let it blossom forth. But for compassion to bloom, we need to learn to be kind to our own self. Remember, you cannot pour from an empty glass.

Does turning spiritual mean you start earning less?
For most of us, spirituality lies in amassing wealth! And much more than what we need, even if we have to deprive others, do wrong, by any means ill or foul. That is spirituality gone all wrong!   
Our ancestors had laid down certain guiding principles that they called dharma, as expounded in the Atharvaveda. If you are in tune with your nature of bliss and compassion (which is your true self, the nature of the soul), the transient pleasures of this worldly existence no longer serve a sense of meaning or achievement.
Wealth or riches cease to matter when you no longer hanker after transient happiness. Instead, you are focused on attaining permanent happiness, which is in fact our primitive nature, the nature of the self.
So, a spiritual person is actually a storehouse of wealth!

Can an atheist be a good palliative care physician?
Of course, an atheist can be a wonderful physician. He just needs to demonstrate compassion in the genuine sense. For that, he needs to understand himself. In order to understand his own nature, he may resort to religion or may choose to revel in nature. The means are not important, the goal is.
 
Is asking a patient to pray an essential part of palliative medicine? Does it need to be imposed?
Spirituality is inbuilt; religiosity is acquired. Religion can often help us in recognising our spiritual nature. It is human nature to try to influence others and impart our own method of belief.
It is imperative not to impose our viewpoints on a terminally ill person. They are very vulnerable and are most likely futilely clutching at straws. The palliative care team should demonstrate a compassionate presence, rather than try to impose their beliefs and doctrines on the dying.
Imposition is not a demonstration of compassion. However, if a patient asks for your help, you may help, provided that you understand your religion. This is exactly what had prompted me to study religion, so that I could be in a position to address their queries.
If you do not have a good working knowledge of religion, please delegate the responsibility to someone who is qualified to help in this area.

What do you have to tell new doctors?
I love to address newly qualified doctors, for it is easier to write on a clean slate. I primarily talk to them about the difference between spirituality and religiosity. I urge them to understand their spiritual nature and to demonstrate compassion not only in their clinical practice but also in their daily lives.
I teach them the art of being free. I tell them to learn to love themselves, to fill up their empty tumblers with love, so that they can pour it out to fill other empty glasses.
It is important to try and be a better human being. Being a better doctor will follow naturally.

It was the melting ice situation. The ice is there and melting. You get used to the ice. Then, suddenly, you are left with just water and no ice!
She had fought bravely, holding on to life, with hope. Now she was limited to her bed. Her tired and cancer-ravaged body could no longer heed the demands of her mind. After all, the mind and body are two separate entities.
As she lay struggling for breath, I sat down and drew out the black whirlpools of air from her mouth, one of the nine gates (navdwara). It was the ancient Tibetan practice of phowa (the practice of conscious dying). The oral opening came spontaneously into focus as I meditated. I drew out till it no longer came.
At the end, she gently opened her eyes, gave me a soft smile and whispered, "Everything is so clear to me now, I can see everything now, my last time...." Her face radiated peace and a sense of accomplishment, as she closed her eyes.
And this was the same lady who was not prepared to let go! She passed away peacefully 12 hours later.
We need guidance at the time of dying, like a giant ship needs little tugboats to guide it out of a congested harbour into the vast open ocean.
We need to be guided through the bardo (an intermediate state) of dying, through the bardo of afterlife and the bardo of becoming.

Spiritual care is not only an ethical obligation of the nursing profession but also a key tenet of palliative care. Nurses, as part of the interdisciplinary team, assess and attend to the patient's and family's spiritual, religious, and existential needs within their scope of practice.
Spiritual care has been described as "…the most mysterious and often misunderstood part of palliative care." It has been defined as "allowing our humanity to touch another's by providing presence, deep listening, empathy, and compassion." Regardless of how spiritual care is defined, an important element is what nurses bring of themselves to the patient encounter.
The Hospice and Palliative Nurses Association's (HPNA's) Position Statement on Spiritual Care states that spiritual care includes the "…ability of the professional caregiver to reflect on and recognize the importance of one's own spirituality…." Spiritual perspective is an indicator of the awareness of an individual's inner self and a sense of connection to a higher being, nature, and others or to some dimension or purpose greater than oneself that may be manifested in beliefs and actions.
A nurse can acquire skills necessary to deliver spiritual care by acknowledging self as a spiritual being and experiencing, reflecting, and exploring the meaning of his/her own spirituality.

Being present, here and now
In addition to reflecting and recognizing the importance of personal spirituality, the HPNA position statement also indicates nurses should appreciate the significance of presence and be willing to be fully present in the provision of spiritual care. Mindfulness facilitates being present, which is an essential skill for providing spiritual care.
Researchers have found that spiritual perspectives have been enhanced as a result of participating in mindfulness programmes. Cancer patients who participated in a mindfulness-based stress reduction programme had an increase in mindfulness, which in turn led to an increase in their spiritual perspective.
Health care providers report development of skills such as self-awareness, listening, and being fully present. Participants also had increased scores on measures of empathy.
An observational study found that clinicians with higher mindfulness scores were more likely to have patient-centred patterns of communication and high overall patient satisfaction.
After the implementation of a 4-week mindfulness-based stress reduction program for staff on an inpatient psychiatric unit, patient satisfaction increased and patient safety incidents decreased (patient aggression, falls, and medication errors).

Let’s call him Muthu. A few months ago, he was a successful florist. The garden most precious to him comprised his family—wife and three daughters. All three daughters were studying (eldest pursuing a degree, the second one preparing to enter college and the youngest in school). That was important to him. He did not have much of an education; he was not about to let his daughters suffer the same fate. One day his family would have their own house. And he would marry his daughters off in style.
Those dreams were his motivation to work hard and long. 
However, by the time I first heard of him, Muthu was no longer a florist. When you are confined to bed with a damaged spine and advanced cancer of the lungs, there is very little that you can do. Except hold tight to those dreams, worry and wait …. 

“As it happens with most people at a terminal stage, the question that Muthu asked repeatedly was ‘Why me’? Then came the equally heart-breaking and even more worrisome second question, ‘What after me?’,” said K S Sundari, Counsellor at Karunashraya, Bengaluru, where Muthu was a patient. 
“I have never done any harm to anyone. I have no bad habits. Why did this happen to me? And what will happen to my family after me? My wife is so innocent she does not even know how to make a phone call. How will my daughters continue their education? There is no one else who can help them,” Muthu would go on and on.
After Muthu was admitted early September 2019, the immediate aim of the care team was to keep him comfortable, free from pain and distress. “As the counsellor, for the first couple of days, my job was to let him vent. As professionals, we know about the stages of grief: denial, anger, bargaining, depression and acceptance. That tough journey is for the patient to undertake. We can only offer a comforting hand and an empathetic ear.”

Muthu’s first symptoms were backache, fatigue and cough. He dismissed those. There is too much work, and city pollution is bad, he justified. However, when his condition worsened, his wife forced him to go to a doctor. Then came the grim diagnosis.
As radiation therapy started, they hoped for the best. And kept their daughters in the dark.
What landed him in bed was not the cancer, at least not directly. He was travelling by auto-rickshaw when a bad bump on the road gave him a sudden jolt. He was in too much pain to move. The doctors at the hospital, where he was rushed, discovered a ruptured disc. The surgery that followed made it worse.
Two weeks after cancer was diagnosed, Muthu found himself at Karunashraya, limited to the bed and staring at an uncertain tomorrow.
A few days after the admission, the nursing staff observed that he was hardly eating anything. Was there a problem that they were missing? Sundari asked him.
“You see, the nurses here are all as young as my daughter. If I eat, I will pass motion. How can I make them clean me up? It is not right. I would rather not eat.”
Muthu relented only after the nursing team spoke to him, at Sundari’s request.

,Sundari also persuaded him to break the news to his family. Sundari had to take the initiative. The daughters were used to seeing their father constantly at work, when not with them at home. Their first question, as soon as they understood the diagnosis was, “Will he walk again?” It was difficult for them to imagine their always-busy father helpless, just lying there, totally dependent on others.
“We got one of his cousins to stay with him. That helped to lift his mood,” Sundari said.
Karunashraya tapped into its vast network of benefactors. Funds were soon in place to ensure that the girls would complete their education. The shy housewife started attending free classes in tailoring and embroidery.
“I am sorry I am troubling so many people. You have no idea what a relief it is to know that I do not have to pay for all the care you are giving me. And then you have made sure my family will not be in the streets after …”
His worries about “What after me?” addressed, Muthu greeted Sundari every morning with a resounding “Good morning!” Unfortunately, the sunshine did not last too long.
Muthu passed away in his sleep on September 21, 2019. His wife who was with him until a few hours before the end, remembered his request: “Please take care of our daughters.”
Karunashraya made it possible for him to take leave peacefully, relieved and with dignity. His family would always miss him. No one can ever love and care for his precious family as much as he did. But, with Karunashraya backing them, they are determined to fulfil the dreams he had for them. 

Climate is angry. Nations are in conflict inside and out. So are religions.
We violate and eliminate those who are not like us or whom we do not like. Because we can.
Rivers are being ravaged and smothered. Hills are being bulldozed flat. Trees are going up in smoke.
Patients are being exploited; doctors beaten up.
Aren’t these symptoms of a world that is cracking? Compassion is in crisis.
Compassion is what makes us human. It is what makes us love and respect everything around us: human and non-human, animate and inanimate.
This October, we shall talk about one facet of that compassion, from the realm of medicine.

Medicine is not an exact science. There is medicine in the books. Then there is medicine that you try on people, who are more than a package of anatomy and physiology.
Palliative medicine (what I prefer to call compassionate medicine) too is born in the textbooks and draws on science. Yet, it is also the discipline that accentuates the inexact dimension of medicine.
Palliative care is about human intangibles like comfort, peace, solace and compassion, too tenuous to fill a syringe or a capsule. It often prescribes a listening ear, a sympathetic hand or mere silent presence in person to light up lives darkened by grim prognoses.

You will read stories of compassionate care right here in the days to come.
Stories of lives that moved on. Of lending strength to cope with the loss and go on.
Of blurring boundaries between cold science and warm emotions. Of skepticism transforming into spirituality.

Do you have a story of compassionate care (or the lack of it) to tell?  Please share.

Disclaimer: I am not a medical professional. Nor am I an expert in palliative medicine. I do love to tell and share stories of compassion. And I would love to hear your views.
​
The second Saturday of every October is World Hospice and Palliative Care Day.

Uday was about 11 years old when he saw his elder sister being teased on her way to school. That prompted Uday to start learning karate. He went on to become a popular martial arts instructor in Maharashtra and very successful in national-level tournaments.
Years later, Uday was at a court in Pune to meet someone when a boy called out to him. “Sir, what are you doing here?” Uday recognized him as one of his karate students. That boy was with several others, who were all carrying their schoolbags. They had apparently decided to skip school to come to the court. Why? They wanted to see a notorious criminal who was to be produced in court. “He was their hero. I thought it was urgent and important to give them another role model,” Uday remembered. “Else, they were sure to follow their hero and take to crime.”
That incident started Uday Jagtap’s journey to turn people, especially children, away from crime and integrate them into the mainstream. So far, that mission has fetched Uday many honours, including a Guinness world record.

Uday believes that for most people, crime is not the primary livelihood option. “The first crime is often the result of an impulsive action or an accident. That lands them in jail, and they get branded as criminals. When they are released, no one is willing to give them a job, nor do they have the money to start some business. Whether they are reformed or not, they are left with one option to survive: crime. And the child of a criminal is more likely to turn to crime,” Uday said.
With the help of his family and some friends, Uday produced a small film. It showed a young man, like many in Pune, who felt proud to commit a crime. The film focused on the plight of the family after he was put away. How the young wife struggled to eke out a living. The gradual change in the attitude of his friends, who were once his admirers. Far from making him a hero, the film depicted how crime made him a victim and caused untold misery to his family.
Uday used this film as an ice breaker when he set out to understand the mindset of a criminal. He got permission from the authorities and visited Yerwada jail. “I showed them the film and had long discussions with about 2,500 inmates. The hardened ones apart, many of them regretted their actions, but had no clue how to get on with their lives once they were released.”

Just to drive the message home and to ensure they were committed to turning over a new leaf, Uday drafted a letter. It was from a daughter who was missing her father at every birthday. “Day after is my happy birthday. When my friends celebrate their birthday, their fathers are around. But you are never there. Don’t you feel like coming? Everyone asks me. When I ask mother she just cries and promises to tell you.”  The letter ends with a plea to Ganpati Bappa to send her father to her with treats on her birthday. “And when you are coming, please get a new schoolbag. Mine is torn. I miss you a lot.”
Of the 2,500 prisoners who received that letter, 190 sent a reply to the jailor saying they wanted to start a new life.
“In response, an NGO that I belonged to, Adarsh Mitra Mandal, promised to support the education of their children. Also, the jailor chose 26 of them who were due for release and recommended them for suitable jobs. We found them jobs based on their qualification, experience and interest. Eleven years later, some of them have found new jobs or have started a business. But, not one of the people we supported went back to crime,” Uday proudly stated.

Uday thinks it is important for every child to have a healthy role model. Everyone appreciates an example like Sachin Tendulkar. However, “when you are growing up in a crowded slum or chawl, where most fathers spend time drinking and mothers are too busy keeping the family going, even Sachin can fail to score,” Uday pointed out.
“It is easier to look up to the local goon who appears to lead a lavish, fearless life. We countered this by putting up photos and messages of well-known saints and historical figures at many homes. This had an immediate impact on the alcohol problem. Maybe the fathers found it a little awkward to drink when a Sant Gnyaneshwar or a Mother Teresa was keeping an eye on them. The ultimate beneficiaries were the children,” Uday said.

There was one school in the locality, which was notorious for a high failure rate and rowdy behaviour. The pinnacle of achievement for many children was to feature on hoardings that celebrated criminal elements.
“We worked with the teachers and the local police to identify some of these children. Soon, we were counselling some 24 children. We held classes for them in police stations. On the one hand, the children got to see where criminals ended up and the fate that awaited them. On the other hand, the initiative empowered policemen, used to being punitive, to become proactive in helping build a healthier society. We named this police-public project Parivartan."

Sports libraries were another initiative started by Uday. “We keep complaining that children are addicted to the mobile and TV. But, as parents, we don’t or can’t afford to do anything about it. A sports library makes it easy to keep children occupied in healthy games. Any child can borrow a play equipment (bat, ball, chess set, skating shoes, etc.) for up to three days for a daily fee of one rupee. We urge them to play without fear; they will not be penalised if some equipment is damaged during play. For cricket bats, we put in a condition. They must find at least another 10 children to play with. As a result, we witnessed the formation of some informal teams. The heartening part is that even after eight years, the teams are still playing together. We have 3 sports libraries functioning in Pune and 25 in Gadchiroli.”

Gadchiroli, situated about 900 km from Pune, is notorious for Naxal activity. Over four years ago, Uday happened to catch a news headline on TV: some Naxalites had been arrested in Pune. He wondered: if the violence that has caused so many deaths over the years can come to Pune, why can’t peace go from Pune to Gadchiroli?
“My first reaction was to get in touch with the top police officers in Gadchiroli and tell them that I wanted to do some social development work there. Initially, they discouraged me saying that the ground situation was very bad, and I was better off doing my work in Pune. But so many policemen, so many adivasis dying! For what? I just couldn’t sit back, watch the news and be safe in Pune. I went to Gadchiroli.”
Based on his Pune experience, Uday started helping the children first. “The children were innocent victims. They had to walk for 5 km or more to reach school only to find that there were no teachers. Most of them lived in thickly forested areas. We first got the children some bicycles. With generous help from Rotary and my friends, we managed to give them 110 bicycles.”
Then came electricity. “I was warned that there would be severe opposition to electrification from the Naxalites. For me it was symbolic. More than 70 years had passed since the nation gained independence and they were still in the dark. They deserved light. We began with five schools and then lit up more than 1,000 homes with the help of solar power. Some of the old people at home would just sit and stare at the lamp at night. It was something they had never seen, never even dreamt of.”
It was not possible to force the teachers to risk their lives and come to school, but it was possible to reach education to the children. “We set up e-learning facility in three schools. Attendance improved, not just of students but also of the teachers, who now faced a different problem. With students going to schools that had e-learning, the other schools were in danger of being derecognised for want of students. I met a group of 40 teachers, and they pushed the government for e-learning in more schools. At the request of the government, and with the help of Rotary, we set up e-learning in 1200 schools. Now, the teachers maintain the system and ensure regular update of the software.”
While e-learning was a giant leap, it did not cover all children, especially those in remote areas, too difficult and too dangerous to access. Uday and his team worked out a solution--Gyanganga!
“We set up libraries in all police stations. Most police stations in Gadchiroli are like fortresses. Once a policeman enters a station for duty he may not come out for over a month. But the children could go in and come out easily and safely. It worked well for the police and the children!”
For those children who could not make it even to the stations, the police ensured that the library reached them. “We set up what we called ‘cot’ libraries. We would take the books to a village and spread the books on a cot. The children would come and read. The library would remain in one village for two days.”

Uday wanted to help the children lead as normal a life as possible, away from the threat of guns and the shadow of death. So, following the Pune model, he also set up sports libraries in various police stations.
Public health facilities were almost non-existent. The solution: mini ambulances, equipped with all essential facilities, manned by a medical team and operating within a 10-km “safe” radius. “It was a problem keeping the motorcycles refuelled at all times, ready for action. So, working with an engineering company in Pune, we have recently developed an e-ambulance than runs on three wheels for 80 km on a single charge. We will be deploying these soon.”

It was a happy sign that many Naxals were giving up violence, surrendering their weapons and accepting government support (land, means of livelihood) to once again live peacefully. However, Uday thought more needed to be done.
“They had taken to the violent way of life after they were brainwashed. Now, they were willing to return to the mainstream but was it not necessary to reboot their mindset? We resorted to Gandhigiri to achieve this end. We offered those who had surrendered an opportunity to become familiar with peace and non-violence through Gandhiji’s teachings. We gave them books. The police and I would talk to them. Finally, 56 appeared for the Gandhi Vichar examination.”
Uday added: “It was a very significant moment for all of us. Those who could only think of violence were now wearing white caps of peace. Hands that held murderous AK47 guns were now holding simple pens with the power to transform lives.”
Also, “there were attempts being made to fan inter-caste conflicts. With tremendous support from the police, we got leaders of different religions to talk to the people (especially children) and answer questions. It was soon clear to everyone that no religion advocated hatred or discrimination.”

While this transformation was revolutionary, Uday was convinced that making an impact would require the involvement of children. They were the ones who could bring about a radical change in the way the world looked at Gadchiroli. It was time for good thoughts to find expression as good words and set up one good deed that the world would applaud. It was time for Gadchiroli to bask in the Guinness limelight.
The team mobilised 13,500 children from 273 schools for a Sadbhavana examination. The children were exposed to thoughts of leaders like Mahatma Gandhi, other historical figures and the religious leaders they had interacted with. The participants also had the opportunity to express their own thoughts on peace.

Based on all these inputs, Uday Jagtap penned a book Gandhivichar Aani Ahimsa (the thoughts of Gandhi and non-violence). This was read out by nearly 7,000 residents of Gadchiroli (mainly students) creating a new Guinness World Record: “The largest audience at a book reading (single author) consists of 6,786 people, achieved at an event organised by Gadchiroli Police Department, Adarsh Mitra Mandal, Uday Jagtap and Maheswar Reddy (all India), in Maharashtra, India, on 3 March 2018.”
Uday said, “I told the children that it was up to them to change the way the world saw Gadchiroli.” This world record is what Gadchiroli should be remembered for, not violence and not backwardness. You have made it happen, you can make it last.”
A copy of the world record citation was given to all and now occupies a pride of place at more than 7,000 homes. “According to a police survey, the Naxal movement has seen no fresh recruitment in the last four years or so. I am confident a new Gadchiroli will emerge in another five years,” Uday is positive.
He conducts regular educational tours to Pune for the children of Gadchiroli. “It is hard to believe, some of them have not seen a world outside the forest where they live. The visits and the interactions open their eyes to possibilities beyond a life of fear, suppression and violence.”

“I may provide all the comforts to my children. But in the process if I totally ignore my neighbour who continues to live in misery, anger and frustration, I am putting my family in danger. We are safe if all of us feel safe. We are at peace if all of us are at peace. So, the motive behind social work is in a way selfish. That’s how I see it,” Uday smiled.
He is grateful for all the support he has received. “There is nothing that I could have done alone. I have had great support from the police in Pune and in Gadchiroli. My friends in Adarsh Mitra Mandal have been with me every inch of the way. There are many organisations that came forward to help financially and otherwise. Many are keen to take up new projects.”
Doesn’t he fear for his life when he works in the jungles where every shadow hides possible death?
“Of course, there is always a threat and I keep getting indirect messages to stop what I am doing. Fear does not help. At the same time, when you become a martyr, you end up being just another statistic. To do more and to help the cause of progress, you need to remain alive. Therefore, while working, I do take basic precautions.”
Yes, there have been failures. There have also been touching moments, “more precious than any record.”
“There was this old woman who would keep calling me at every odd hour. She was living alone and was unable to move around. Her daughter lived at a distant place with her husband, who was a violent alcoholic. The mother was worried the son-in-law would one day kill her daughter. I would keep reassuring her that within 10 minutes of her call either the police or some friends would reach her to help. One day she told me: ‘Beta, when I speak to you, I am able to sleep in peace. That’s why I keep calling you.’”
Then there was another old woman who rebuked him. “Several years ago, at the time of Ganesh festival, we screened a movie that showed how boys could put on fake looks and make false promises to lure gullible young girls. An evening after the show, one elderly woman got up and roughly caught hold of my shirt. ‘Why didn’t you make this two years ago? You would have saved my daughter.’ Then she broke down.”
At 47, Uday heads a business that employs 350 people across 8 offices and deals with 94 well-established companies that outsource work to his enterprise. “Most of the money for the social work I do comes from here. Also, the people who work with me typically contribute a month’s salary. Then there are project-based donors.”
As his family pleads with him to be careful for their sake, he is now focused on delegating old and new projects to other NGOs and individuals, who are genuinely interested in social work. And he continues to make regular visits to Gadchiroli.
What next?
“Pune is supposed to be a pensioner’s paradise, the Oxford of the East. Instead, we now have increasing unrest, violence and worsening traffic. I have started some work on tackling the traffic problem. Plus, I would like to do more for children. Recently I managed to expose the menace of hookah-pens and e-cigarettes. The government has now banned its use. There is so much to do.”
Uday Jagtap is far from done.

Bhoopali Nisal was fast asleep when her father answered the telephone about 1.30 a.m. on November 16, 1995, at their Ahmednagar residence. Without telling her anything, he immediately started. His destination: Bhoopali’s elder sister Deepa’s place in Pune, where he had bid bye to Deepa just a few hours before. Where he would now reach to find her dead.
At 19, married for about a year, Deepa was full of life—astronomer, actress, photographer, poet, dancer, musician, state-level badminton and basketball player, and studying-to-be a polymer engineer. True to her name, Deepa was a lamp of happiness who lit up lives around her.
For Bhoopali, tai was more than a sister, older and wiser. She was parent, friend and guide. A relationship of deep love that only got stronger even after Deepa, much to the surprise of everyone, agreed to an early marriage when a close family friend proposed.

“The violence started just about three months after the marriage. However, there was never any mark of the beating she got on her body. I was 15 then, and like everyone else, I hoped things would settle down and my dear tai would be happy. Every night at 10 p.m. we would both talk over the phone, sharing everything,” Bhoopali recollected. “Finally, when she met Papa the day before she died, she told Papa that it was getting too much. They decided that after appearing for her last paper in the examination, a week away, she would return home.”
 “The news of Deepa’s death was such a shock that I lost my ability to speak for a few days,” Bhoopali remembered.
After a couple of days, her father asked Bhoopali, “Do you believe that your tai would commit suicide?”
Bhoopali was emphatic, “No way!”
“Then what are you sitting around for?” her father replied. “Get up! We have to fight!”

Ten years of struggle followed. Countless visits to the court, police, lawyers, VIPs, anyone willing to listen and help them get justice. Bhoopali put aside any thought of her own career or life. She had dreams of studying aeronautics in Chennai. With the case on, she was tied to Ahmednagar and Pune. She settled for a Diploma in Mechanical Engineering from Ahmednagar in 2000.
Her father too ended up paying less attention to his construction business. The fight demanded every moment of their time, and tested every fibre of their patience and determination.
“It was so frustrating how the system worked against you. We simply did not have the resources. I remember poring over medical books and talking to doctors to establish that the nature of the brain haemorrhage the autopsy had revealed indicated not an overdose of contraceptive pills, as the lawyers tried to establish, but trauma.”
Regardless of the setbacks, young Bhoopali was as determined to keep the fight going as her father, if not more.

During their struggle, they got acquainted with others who were also fighting a seemingly hopeless fight against an uncaring system.
“There were so many people, many of them women, with zero support, fighting on in the hope of getting justice. In comparison, even though we were not rich in terms of resources, we had our friends and family with us. They were totally lost. Papa thought the best we could do to honour tai’s memory was to do something to empower people with education and guidance.”
They set up the Deepa Nisal Smruti Pratishthan (Deepa Nisal Memorial Foundation), a year after Deepa’s demise. Over a period of time, the Pratishthan got into several activities, all based in Ahmednagar.

One of the first institutions the Pratishthan set up was a public library and a study centre. “Papa strongly felt that the answer to gender discrimination and domestic abuse lay in good, early education,” Bhoopali explained.
“Presently, the library has more than 15,000 books. The study centre benefits those who lack the space or the books to study at home. It has been very useful to many students from various parts of Maharashtra, especially those who are preparing for MPSC and UPSC examinations. Some of those who made good use of this are now occupying high posts in government service. Tai would have been proud.”
Nyayarth is another Pratishthan venture that provides guidance and counselling to those seeking justice. Bhoopali said, “Papa’s efforts made it acceptable and easier for girls to return to their parents, if the marriage was not working out. While counselling reunited some, others found more suitable partners and led happier lives. One may go through a bad patch, but that is no reason to end or take a life.”
Bhoopali continued, “Through Nyayarth we guide people so that they follow the right course of action. Most cases we see are of domestic abuse where women are at the receiving end of physical and verbal abuse. In some cases, men are the victims.
“Fortunately, in Tai’s case no one changed his or her testimony in court. However, in several cases that we handled through Nyayarth, we found that change of testimony was a frequent problem. This made us lay emphasis on scientific evidence, which does not change in the course of time. So, now we have a forensic expert in our team, who helps people understand medico-legal reports and how to make the right use of those.
“Unfortunately, though not surprisingly, many people give up when they discover it is a slow and tough fight. It is disappointing when we invest our efforts for a long time and then all of a sudden, they withdraw. We just move on.”
Under Devrai prakalp, the Pratishthan undertakes tree plantation drives in nearby villages. So far, more than 400 trees have been planted in six villages.
Then came a computer institute open to everyone. The training was free or at a nominal cost. The Vanaushadhi Prachar Kendra was an earn-and-learn venture where students sold herbal medicines. The profits were used to fund their education. The Pratishthan also set up an Aaji-Aajoba Centre. This was an activity centre for senior citizens. These three ventures were closed down in 2006.
The Pratishthan started observing every November 16th as Deepa’s smrutidin by organising an all-Maharashtra competition—photography and Marathi poetry, both favourites of Deepa. For the contestants, it was a prestigious achievement to find their winning work (picked by independent judges) published at the end of the year. Blessed by luminaries in the field, it soon became a national event and even started attracting entries from other countries.
“One day I received a call from a girl in Maharashtra, asking about her entry to the competition,” Bhoopali narrated. She took it to be a routine call and confirmed that the judges had received her entry and she would soon receive an acknowledgement letter by post. “Please don’t!” was the surprising response from the caller.
The girl was deeply interested in poetry and that was the reason she had participated. “My people (in-laws) at home do not know I write poetry. If they come to know, they will beat me up. So, please don’t send any communication and please don’t publish my name.”
When all entries were adjudged, her poem turned out to be among the top 20 entries. “Sadly, we did not publish her poem as we do not publish anonymous entries. And we did not want her to get into trouble,” Bhoopali said.

Meanwhile, the case was dragging on. “After the district court awarded life imprisonment, the accused was in prison for barely three months,” Bhoopali said.
“They filed an appeal in the High Court. That meant we now had to make frequent trips to Mumbai. That really took a toll on us. There were times when I did not have enough money to return to Ahmednagar from Mumbai. We were fighting a strong adversary. Just to encourage me to give up, someone tried to run me down. Papa’s health was failing, and he asked me to give up and focus on my career.”
Bhoopali’s father, now a broken man, passed away on June 17, 2005. Bhoopali decided to keep up the fight, all by herself.
“In a curious turn of events, despite the arrangements I had made to be present on all critical days, the court ruled against us when I was not present. Also, a few procedural blocks ensured that I lost out an opportunity to take the case to the Supreme Court.
“We lost but, at Nyayarth, I now make it a point to narrate the mistakes I had made so that others have a better chance of getting justice.”

The very evening her father passed away, Bhoopali was taken aback when 700 people came to see her. “They were the daily wage earners who had been employed by my father. Now that father was gone, there was no job. And without a job, they were afraid they would starve. They wanted to know if I had any plans for them.” Bhoopali heard them out and sent them away with the promise to figure out a solution.
She consulted her mother. With so many families depending on them, there was only one solution. She had to take over immediately. “My mother was very composed. She asked me to go ahead,” Bhoopali said.
The next day, after immersing her father’s ashes, Bhoopali went to his office. She called every employee. Took charge of every pending job. They used to renovate bungalows and build temples. “It was difficult for me to understand the intricacies of civil engineering, given my limited exposure to mechanical engineering,” Bhoopali said.
Over the next two years, she completed the remaining jobs, ensured that everyone found other jobs and closed the company down. “Unfortunately, stating some reason or the other, no one paid me any money during those two years. Suddenly, I found myself in a desperate state. I needed a job to support myself and my mother.” Bhoopali got ready for another struggle.

On the strength of her old diploma, she found a job as an inspector for an engineering company. “The job involved visiting various engineering companies and inspecting their facilities and work. That gave me the opportunity to understand the world of engineering as a business. Slowly, I gathered the courage to start my own enterprise.”
Beginning with a borrowed lathe and a drill and working from a small rented place was not the real problem. “No one was willing to give me an order. You are a woman. How can you do a machine job? I kept hearing that.”
Worse, the industrial park where she started out had no toilets for women. She had to put up with that for four years.
“The biggest plus when I moved to my own factory building in my own plot, in 2013, was that I finally had a toilet for women,” Bhoopali said. Not that she succeeded in recruiting a woman mechanical engineer or even finding one in her vicinity. Now that she has a team of ten and has a good track record, “it is easier for me to approach new clients. People no longer ask me if I have come for an accounts or office job.”

During her long conversations with her irreplaceable tai, there are a few pieces of advice that young Bhoopali imbibed, even though at that time she was too young to understand those fully.

• There may come a time in your life when you may ask, “why me”? Instead, ask “if not me, who else?” You are put in a situation because you are the right one with the ability to face it.
• Don’t live with regrets. Don’t look back at the end and think “wish I had done that”. Never lose sleep because you did or not do something.

One day in September 1995, Deepa had come home, hugged Bhoopali and said, “Don’t ask me anything. Let me just cry.” After she had calmed down a little, she made a strange request to 15-year old Bhoopali.
“Whether you get married or not, adopt a baby girl. I wanted to, but now I don’t think it will be possible. Please name her Srujan.”

Srujan, all of 6 months, came home on January 12, 2012.
“Some think that when we adopt a child, we are doing an orphan a favour,” Bhoopali pointed out. "My experience is that we do not adopt a child, the child adopts us. At a time when everything was gloomy and there was hardly any conversation at home, Srujan adopted our family and lit up our lives again. My mother was reborn.”
For some reason, as soon as she could speak, Srujan decided to call Bhoopali baba (father) instead of the expected aai (mother). “Initially, we tried to correct her. She wouldn’t change. Then I accepted that it really doesn’t matter,” Bhoopali said. The two were a hit in Srujan’s school during Father’s Day.
Srujan knows that she is adopted, and she has some idea about what happened to tai. “I keep telling Srujan that there is nothing that she cannot do. Makes no difference that she is a girl,” Bhoopali said.
Indeed, Srujan cannot have a better role model than her baba. Here is a partial list of  Bhoopali’s achievements: National Technological Innovation Award for her final-year project of conversion of two-stroke petrol engine to two-stroke L.P.G. engine; tabla visharad (“can play any musical instrument”); state-level cricketer (leg-spin and batting), horse-riding champion, and karate and judo exponent. Her multifaceted personality (academics, music, sports) has won her a permanent place of pride among other luminaries in the prestigious Marathi Encyclopaedia.

A suicide ended Hemlata’s first job with an NGO. It was probably no big deal for the locality in New Delhi, where gender decides the value of a life. But it shook up Hemlata, then in her early 20’s.
“I will never forget her beautiful face and smile. And she was among the brightest in the class.” The memory still haunts Hemlata. “I fell sick. It took me a few days to feel strong enough to face the world again.”
The NGO was doing a good job of ensuring that the children came to class and got good education. “However, we failed to truly connect to the children. Later, the locals said she had ‘something’ going on with a boy. At the age of 12? And we had no clue that she was so desperate?” Hemlata considered it her personal failure.
At the education centre that she heads today, Hemlata is more than a teacher. She is a dear friend, a trusted confidant and a role model to her students.

Hemlata was born in Bareilly as the oldest of two brothers and three sisters. The family moved to Delhi when she was barely one.
She remembers her father’s words when he took her to college: “This degree will open up many doors for you. Please study well.”
Hemlata had already started tuitions at home to pay for her graduation and her personal expenses. “Looking at the state of girls where I lived, it was enough that my parents were letting me study. I did not want to burden them more with money problems.”
She passed her B.A. examination from Delhi University in 2012. She wanted to complete her B.Ed. immediately after but her financial condition did not permit that. (Hemlata has now taken up B.Ed. and has already completed one year.)
In order to help her mother, Hemlata decided to stay at home for some time. She used that time to tutor her younger brother. She also tried her hand at becoming an electrician. That didn’t work out.

Her first love, teaching, was calling her again. She applied to another NGO that was about to start a centre to teach girls at Kalyanpuri, two kilometres away from her place.
The task was daunting. The locality was not safe for girls. Hemlata had to go there as an outsider and conduct a house-to-house survey to enrol potential students. Then she had to persuade the sceptical and at time hostile parents let the girls come to the new centre.
Sure enough, she had to put up with some nasty comments as she negotiated the narrow lanes. Banking on the encouragement she received from her team, she persisted. She armed herself “with a thick skin and plenty of hope.”
Most initial visits were just to establish herself as a harmless visitor with a positive intention. Whenever she came across a family that had school-going girls, she would ask if the children were receiving tuition. Most parents could not afford the money or the time (in Kalyanpuri it is considered unsafe for girls to walk alone). So, would they consider sending the girls to the new centre nearby for free tuition? Maybe for an hour to begin with? The parents could also come along to see what was happening. Please?
Her perseverance paid off. “In about 20 days, I managed to enrol 54 students.” The centre started in May 2016. Later, she would help recruit another teacher, Bharti, and take the tally higher.

The main objective at the centre where Hemlata plays the lead role is to ensure the girls remain successful in school at least until grade 12. So, they get supplementary education in the main subjects like Mathematics, Science and English.
However, the care is not limited to academics. “We pay attention to their nutrition. There are regular health check-ups. We help uncover and develop the artist in them. We encourage them to express themselves freely. We make them confident enough to stand on their own in society. The martial arts classes help.”
“They are in their early teens and very impressionable. We keep talking about various aspects of life—good touch and bad touch, and the importance of pausing to think before taking any important decision. The teachers look out for subtle changes in attitude, in dressing and in dealing with others. And we stay in touch with the parents.”
Hemlata clarified that the idea was not to dictate how the girls ought to live their lives. “We encourage them to make friends and to spend time with others regardless of gender. However, if the cues are not right, we caution them. Is a friendship becoming an obsession, a distraction that pushes everything else away? Do you end up doing things on the sly? Do you find yourself telling lies often?”
She remembers a case where a girl was all set to elope with a boy. When the parents got wind of it, they made matters worse by preparing to marry her off immediately (early marriage is common as a "safe" option). It took several rounds of counselling to restore normalcy.
“The tendency is to come down on the girl heavily and ban everything. What she really needs is a friend, not a disciplinarian, someone willing to hear her out. We told this student she was at liberty to choose her friends and a life mate. The choice was acting in haste now, losing her education and the regretting it later. Why not wait until she was old enough to take a mature decision? Wouldn’t the relationship have a better chance if they waited until they were both older and independent?”

Three years after Hemlata braved the hostile lanes to enrol them, the girls are today more confident and better equipped to tackle the world on their own. One girl had enrolled from a locality where conditions were the worst. While the teachers helped her with personal hygiene, it was a task to make her sit properly in one spot. However, she was a keen observer and noticed how her fellow students were behaving in class. Soon, she was chastising others who behaved badly.
Another student began as a very shy girl. She too absorbed what was happening around her and made Hemlata her role model. Now she is confident enough to mind the class when required. “The transformation came from within her; we just let her discover herself,” Hemlata said.
Hemlata has now taken on the responsibility of running more educational initiatives. She is training more teachers to be mentors. She would love to see more such centres in economically diverse locations.
“Here we had to deal with reluctant students and reluctant parents. It took our team quite some time, but I believe that we have succeeded in changing the mindset of the local community. I am sure there must be other families, maybe in different economic brackets, keen to educate their girls. They don’t know where to go. Here we go beyond tuitions and examinations and prepare the girls to fare better in life with confidence. My experience tells me more girls deserve that opportunity,” Hemlata said.
Her mission is clear. “I want to keep learning and help more girls learn to cope with life.”
Pooja Varma, a development professional, who played a key role in recruiting Hemlata and then went on to work with her, is amazed by Hemlata’s growth. “From someone not at all sure of herself, she is now a confident leader and an efficient trainer. She is sensitive to the feelings of the girls, knows them well, and yet respects their privacy. I remember the bold stand she once took to refuse all scholarships because the money was offered only to a few students. She felt that kind of discrimination would cause major disruption and undo all the good they had managed to achieve. Hemlata is mentoring more teachers to be more than just teachers in the academic sense. I am sure she will go on to guide more and more girls discover themselves. She will give them the courage to dream and the wings to fly.”