The Guardian recently reported a study that found “the brain shields us from existential fear by categorising death as an unfortunate event that only befalls other people”. In other words, we are wired to deny life's only certainty, death.
That being the case, it can be difficult to document our preferences about death. How can we think and discuss about how we want to be treated (or not) should we reach a terminal stage, a point of no return? But, think we ought to. Discuss we should. Document we must.
The Supreme Court of India gave legal sanction to this “advance medical directive” or “living will” on March 9, 2018. The Supreme Court ruled that “in specific circumstances, a person has the right to decide against artificial life support by creating a living will,” and that “the right to life and liberty, enshrined under Article 21 of the Indian Constitution, also includes the right to die peacefully and with dignity.”
Delivering the judgment,  Chief Justice Dipak Mishra observed: “Should we not allow them to cross the door and meet death with dignity? For some, even their death could be a moment of celebration.”

​Despite the ruling by the apex court, a living will remains a touchy issue. In 2015, three national medical associations of neurologists, intensivists and palliative care physicians came together to form the End of Life Care in India Task force (ELICIT). Dr Roop Gursahani, a consulting neurologist, who is part of ELICIT, says we “need to make conversations about death natural and not forced”. He points out that a living will “takes care of one’s healthcare decisions at the end of life."
While living will formats can be easily downloaded from several sources (here is one), the government is yet to translate the Supreme Court ruling into enforceable procedures. Some experts feel what the court has suggested is too restrictive. You need to be certified terminally ill first, which may be too late. Also, the will needs to be countersigned by a judicial magistrate first class, who is not within easy reach of most people.   
Nevertheless, it is prudent to make a living will and communicate your preferences to your loved ones and those responsible for your health care. As it is difficult to plan for every eventuality, you can leave it to the discretion of one or two people whom you trust to implement your will. 

​Mention “will”, and one tends to think of a very legal-looking document. And of lawyers, and members of the family throwing not-necessarily friendly looks at one another. You also think of someone very ill, unlikely to be helped by all that he (or she) owns and has willed it away for others to enjoy.
What matters most at the end is peace and dignity, at least for the patient. However, there is no wishing away the money elephant in the room.
Fortunately, compared to the ethical and medical issues, planning for financial security is easier, provided you are willing to start long before it is time to make that final transition.  

​Q: Whether you wish to try everything possible to prolong life or decline heroic medical interventions, there are financial implications either way. How does one tackle this?
Sneha: Life is a very delicate topic. My life is more precious to my near and dear ones than I perceive it to be. And this is often observed when a family member has to decide about treatment at the end of a loved one's life. These decisions are emotionally and financially draining if we do not know what the patient wants.
You can help your family by having three things in place:

1. Life insurance along with health, critical illness and personal accident cover, when you are still working and earning.
2. A separate fund for medical treatment at the time of your retirement. This will ensure that your family is not put under pressure when you are beyond insurance cover.   
3. A living will that will make end-stage decisions easy for your family caregivers, without getting into ethical tangles. 

 
You help clients plan their life goals after retirement. Do you talk of terminal illness? Is it possible to quantify this requirement?
Like I said, from the financial planning point of view, everyone should have the four basic insurance policies in place. However, as it keeps on increasing with one’s age, paying health insurance premium would be difficult after retirement. Additionally, medical inflation (cost of medical care) is presently the highest at 12% per annum. This is the reason why we need a separate medical corpus for the post-retirement period.
When I speak to clients on retirement, I start by understanding their expectations. Many are practical. Some I need to sensitize about age-related illnesses. How much would they value their financial freedom should such a situation arise? 
The value of the corpus would depend on the individual and family, their standard of living, cash flow, net worth in the pre-retirement period, etc.
 
These days parents prefer not to burden their children with end-of-life care. Do you have that conversation with the parent(s) or the children or both?
Today, most parents are self-sufficient. However, they do need help in case of a medical emergency. Those who are still earning and want to be self-sufficient can build up a buffer for these emergencies. When I begin my conversations with parents, I try to understand where they stand in the Maslow hierarchy. 

When I know it is the right time to speak about legacy and wealth migration, I chart out detailed sessions with the parents first and then their children. During these sessions I speak not only about estate planning, but also about palliative care, end-of-life treatment and living will. Once the parents understand all this and are confident enough to talk about it, I involve the children.
However, in spite of the Supreme Court ruling, the legal status and practical applicability of the living will remain hazy. Therefore, I tell my clients they should consult their doctors and lawyers about this.

One son abroad is fully bearing the cost of treatment. The second son in India is the 24-hour caregiver but has no money. They have conflicting views on what is best for the patient, their father. How do you tackle such a situation?
In this scenario of transition, both the sons are in what we call the anticipation stage. You expect an event (end of father’s life) to occur but that has not yet happened. Both the sons portray struggle traits in their behaviour. The one abroad is probably feeling helpless as he cannot be present physically. The other one is experiencing emotional fatigue, where he cannot see his father suffering in front of his own eyes. As a financial transitionist, I would use certain tools to help them clear their fears and frustrations. Then help them arrive at a decision that both are happy with and is best for the father, too.
 
If one has drawn up clear plans after discussions, how to ensure those are enforced when the patient is totally helpless? For example, the patient may expect a certain course of action but the spouse may act entirely differently.
I cannot speak on the legal position, but some of the issues here are that of understanding and expectation. Generally, financial planners/advisors talk about goals because they’re trained to craft them, and create timelines and benchmarks.
Expectations are the spaces that exist in the narrative about goals. Some are vague, some are small, and some are fleeting. Regardless, they’re all important because they influence the thoughts and behaviour of the client. What makes expectations complicated is that they’re frequently not verbalized. Someone may or may not be correct about their perception of the expectations of others, even their near and dear ones. Regardless, expectations can create an unseen but powerful undercurrent that influences relationships, behaviour and satisfaction.
When left unexplained while making important decisions, those details become little spaces of uncertainty that could create financial and personal problems. I help clients write down their assumptions and expectations regarding an event yet to occur. I also discuss the time horizons to gain greater clarity about why they have these expectations. Based on similarities and differences, I help determine the next steps most relevant to them. It could involve separate one-on-one discussions or joint sessions.
This helps verbalize the thoughts and expectations one has of the other and brings the differences to light. Then it becomes easier to work towards a common ground.
 
When is the right time to talk of the living will?  
Again, when I introduce this topic would depend on my comfort level with the client, his or her age, life circumstances, background and standard of living.  For example, if I’m talking to a just-married couple, I will have to be rather sensitive about broaching the subject of a medical corpus. However, if either or both of them have already had close encounters of the medical kind involving someone close, they would be already sensitized. It would be easier to talk about medical corpus, end-of-life treatment and living will.

In your opinion, what can be done to minimize confusion and ensure dignity at the end of life?
Just to sum up, five actions can help a lot:

1. Maintain the required Insurance covers.
2. Build up a medical corpus.
3. Prepare a living will.
4. Manage expectations during the anticipation phase of transition.
5. Review the financial plan to be clear about the financial backing available.

It would be wonderful to work in tandem with the family doctor, the lawyer and the executor of the will. That will help nip most confusion in the bud. However, I would take this call based on the comfort level I have with the client and the time we have spent together. 

Have another question? Ask Sneha Jaggar. ​

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.
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The second Saturday of every October is World Hospice and Palliative Care Day.