With change fast and furious as always, how relevant is what your school taught you two or more decades ago? What is it that you have had to or want to unlearn to cope with today?
Medscape asked this question recently about medical school. Even before I read the article in full, I shared the same question with a few doctor friends. I expected some finger-wagging about the need to keep up with technology and some frowns at the interfering Dr Google. I also expected doctors in the US and India to come up with different answers. Well, surprise!
What Medscape gathered
This is the gist of what Medscape gathered.
What my doctor friends said
What have you unlearnt?
Yes, apparently robots are wonderful surgeons today. But the patients are not automations. The core message from everywhere appears to be to take time to listen and clasp a hand before the robot takes over.
I am grateful to my doctor friends who were kind enough to share their opinion. Special thanks to Dr Srinagesh Simha, Dr Khurshid Bhalla and Dr Pushkar Khair.
So much about the medical profession. What about your profession? Is there something you have unlearnt? Is there something that was taught to you decades ago, but you disagree with today?
This is inspired by a talk delivered by Dr M R Rajagopal, Emeritus Chairman, Pallium India, as part of the seminar series “Palliative Care and the Motives of Medicine”, organized by the Harvard Medical School Department of Global Health and Social Medicine. This is written in his voice with his permission.
The doctors attended to her leg and restored her sight.
But were they solely responsible for giving her “life” back to her?
What about the sweeper who provided food every day
so that she did not have to consider suicide,
as her son had suggested?
What about the social media support
that gave a roof over their heads?
What is the motive of medicine? Are we here just to diagnose and treat diseases? Or is it a bit more than that?
We may have come into it for different reasons but once we are in the field of medicine, we realize what a huge privilege it is to be part of healthcare. We find ourselves in a position to make the most difference to other people’s lives. We see people at the most vulnerable times in their lives and at times become the instruments to help them rise from the depths and smile again.
To actually provide healthcare for all, we may sometimes have to travel over difficult terrain. At times, we have to strike a new path because at the other end there is somebody who belongs to 84% of the global population, without access to quality healthcare. They cannot get to us, we have to reach healthcare to them where they are, when they need it. Does that sound frightening?
It takes more than a doctor
Ironic as it might sound, I got to meet that helpless mother and son when I was leaving a World Palliative Care Day function. The 12-year-old boy had been sent with the hope that someone would be there at the function to help his mother. Her one leg was fully wrapped in an ugly bandage. And she was blind.
She was about 40, a single mother abandoned by her husband. She had been a diabetic since the age of three. Diabetes had stolen her sight four years ago. A surgeon had said she would need an above-knee amputation. Of course, she was in significant pain, “like someone is cutting my leg with an axe.”
She lived in a shack that belonged to someone else. She told me about a weekend when they had to starve. Hungry and frustrated, the son said, “Mom, let us kill ourselves. I cannot bear this hunger anymore.” Mom replied, “Son, today is Sunday. Let’s wait. I will find some way.”
Somehow, they got across to a healthcare center. Luckily, they found a very humane doctor there who put them up for three months before I got to see them. They survived on the meal provided by a sweeper at the center every morning.
They landed at the palliative care day function where I met them first because a kind nurse at the health center had directed them there.
A definition distant from reality
There are several definitions of palliative care today. Most of us working in the domain abide by what the World Health Organization had stated 21 years ago.
Among other things, it prescribes palliative care for those with “life-threatening illness.” Let us go back to the mother we just met. She is diabetic; does she qualify? She is blind; does she qualify? More than anything else, does hunger qualify? The same persistent hunger that almost drove them to suicide?
We cannot be rendered helpless by a definition. After all, such definitions tend to come from the 15% of the world that is rich and where all the meticulous studies happen. It gets applied to the 85% of people living in low-and-middle income countries in drastically different conditions. Do such definitions bind or liberate?
Let us go back to the fundamental issue. What really is healthcare? When we keep someone’s heart beating, are we providing healthcare?
What is the duty of the healthcare provider? The law does not define it in India. But the Indian Council of Medical Research, a statutory body, defines that duty as: “To mitigate suffering. To cure sometimes, to relieve often, and to comfort always.” And the ICMR emphasizes there is no exception to this rule.
How many of us are aware of that definition? Do we practice it? Or do we stick to what we learn from the textbooks as dictated by medical institutions in 15% of the world, the high-income world?
Palliation as mitigation
If you are a healthcare professional and you have not been taught how to mitigate suffering or do not accept it as your primary responsibility, we in palliative care will be happy to help you. Not that we have all the answers. At least, we try. Because mitigating suffering is our primary motive.
Opioids are one of the primary tools we use for relief from moderate to severe pain. In 2017, a Lancet Commission Report depicted access to opioids (which translates to access to pain relief) across the world.
You can easily make out which country is obese, and which is malnourished when it comes to opioid access. The trick is to strike the right balance between easy availability and the necessary restrictions to prevent abuse and misuse.
While we applaud western European countries for getting that balance right, let us not forget Kerala. In this tiny state right at the bottom of India, access to opioids is 16-times more than the national average. In the low-income Uganda, opioid access is three times better than what India claims.
So, this shows it can be done. But why is it not happening universally? Is it because relieving pain or mitigating suffering is not a commercially attractive proposition for the industry that is at the heart of healthcare?
Adding cost to suffering
A study published by The Lancet on December 13, 2017, pointed at a vulgar disparity of life (to borrow Arundhati Roy’s expression). Not only are we not doing what we ought to be doing, but we are letting catastrophic healthcare expenditure add to the pain.
The study aimed to estimate the global incidence of what they called catastrophic health spending. They measured this by the percentage of people whose out-of-pocket health expenditures were large relative to their household income or consumption. You are welcome to read the study for yourself.
Personally, I was saddened and shocked to note that India was among the 12 countries burdened the most by the cost of health: more than 55 million Indians driven below the poverty line by what they had to spend on health; 38 million of them by cost of medicines alone.
Such catastrophic health spending is not only for living with an illness; it is also for end of life—with the dying process excruciatingly stretched out over weeks or months in a desperate effort to prolong life at all costs. Are we afraid of death? Do we tend measure the “success” of medicine by how long it can keep death away? Is it difficult for us to accept that if life were a sentence, death is simply the full stop at the end of it?
In January 2022, drawing on multidisciplinary perspectives from around the globe on the value of death, the Lancet Commission on the Value of Death argued that “death and life are bound together: without death there would be no life.” The Commission proposed a new vision for death and dying. It called for “greater community involvement alongside health and social care services, and increased bereavement support.”
Cruelty of forcing to stay alive
Moving away from professional studies and reports, let me narrate a personal experience.
One of the professors who taught me medicine developed dementia. She was not swallowing well, so she was put on intravenous feed, against the advice of many of us. She would keep pulling the tube out. So, they tied her up. As every doctor knows, physical restraints can cause a 44-fold increase in the patient’s agitation. She did become more violent, and they promptly tied her up tighter.
Eventually she was intubated and ventilated. The family had to walk in every morning and every evening for five minutes each, watching their beloved person being killed in order to be kept alive.
Her daughter lamented, “Here was a person who gave a lot of love to a lot of people. Did she deserve to die this way?” Even as I write this, the daughter is receiving psychiatric treatment. I do not think she was affected so much by the loss of her mother as by the cruel way medicine kept her alive until the last excruciating moment.
Why do our efficient, kind-hearted doctors refuse to accept that death is a part of life? Why do they hold on to the mistaken belief that it is their duty to prolong life at all costs? Is life merely a beating heart?
The National Cancer Grid, a brilliant conglomerate of about 300 cancer institutions in the country launched the initiative Choosing Wisely India around 2020. The objective was to “identify low-value and/or potentially harmful practices in cancer care in India.” It intended to “facilitate a conversation between patients, clinicians, hospitals and policy makers on delivering high quality, affordable cancer care.” The aim was also “to reduce unnecessary interventions to improve overall quality of care, reduce patient toxicity and reduce the financial burden on both the patient and the system.”
One of the recommendations was, “Do not treat patients with advanced metastatic cancer in ICU unless there is an acutely reversible event.” Laudable, isn’t it? But we all know what happens in hospitals. A friend, a senior neurologist, once remarked that our corporate hospitals are like fortresses that the poor cannot get into, and the rich cannot get out of. I do not think he was joking.
A 2019 JAMA paper stated that in European intensive care units, 90% of all patients were taken off life support and offered palliative care once it was clear further treatment was futile. And, in comparison, what is the situation in India? Only 30% are taken off futile life support, that too any without palliative care support. As much as 70% of them die in ICUs. The end is stretched, hour by cruel hour for the patient, day by interminable day for the family.
Helping us is up to all of us
Let me get back to that woman and her son one more time. Yes, we treated her symptoms and pain. That was relatively easy but definitely not enough.
One of us posted her story on social media and requested help. Help came.
We now had money to pay for a caregiver while the patient underwent retinal surgery. After years, she got to see her son again. A diabetologist and podiatrist helped her get back on her feet, with support. She held her son’s hand and walked to a new home, where they are now supported by a monthly allowance, thanks to donations from the community.
There is a huge gap between what healthcare is and what it ought to be. No doctor and no palliative care specialist can fill it by themselves. Does that mean we hide behind a definition and shut our eyes to the problem?
The German physician Rudolf Virchow had said: “Medicine is a social science, and politics is nothing but medicine on a large scale. The physicians are the natural attorneys of the poor, and the social problems should largely be solved by them.”
Our palliative care team is taking small steps. We are far from perfect, and it is a huge mountain to climb. But we are trying. By doing our best to support patients. By talking to the community about what we are doing and how they can help. There are many who want to help. But do not know how. Money is not the only way.
I believe it is beginning to work. It has to. Right now, it is up to us to solve this social, or rather, humanitarian problem.
Every World Palliative Care Day is a special occasion when those who can help get together with those who need help to celebrate life. One such day, in the city of Thiruvananthapuram in Kerala, some 40 people came to the beach to wet their feet. So, what was special about that? These were all people confined to wheelchairs who could barely move out of their homes. It took four people to move each of them from home to the beach and back. So, it took about 160 people to make this happen. All doctors and nurses? No! They were students from two engineering colleges.
And what was their reward?
One of the patients was a paraplegic who did not have normal sensation in her feet. She said, “the waves touching my feet is the best experience I have had in my whole life.” She couldn’t stop smiling.
That was their reward.
And that is the reward for all of us when the community joins hands with palliative care and medicine to mitigate suffering in the true, complete sense.
We have a long way to go. We have just wet our feet.
There is a lizard on the other side of the pale curtain. It seems happy just holding on as the curtain sways.
The old clock ticks on, loud and relentless. The sound fills every gap in the banter and laughter.
He is at the head of the dining table, most convenient to reach on his wheelchair.
“Why don’t you make some tea?” he tells the maid. She is more than a maid. She was the chief help even when his wife was around. She took over as his prime caregiver after the wife’s death and an accident confined him to the wheelchair.
A doctor who has come from a distant city checks him out. He obeys the gentle instructions. Raises his hands. Tentatively at first, grimacing at the pain. As the pain eases, a smile breaks through his white moustache and beard. As the testing and relieving continues, there is unceasing chatter, a lot of good-natured teasing between the patient and the doctor.
The wheelchair handler is called in to understand the doctor’s instructions. Soak his legs in hot water before he goes to bed. As hot as, and as long as he can bear.
As the doctor departs, so does the delivery guy from a grocer, who had been inside, stacking up stuff.
The old man puts down his cup and resumes the story he was telling. Another trip down memory lane. Like the sun filtering through the leaves in a gentle breeze, dates and names are now bright, now in shadow.
The maid signals the guests not to make him talk until he finishes the tea. Else he would again forget to sip. Again, she would have to reheat.
He tells her to shut up and go away. She does just that. Keeping an eye on him but away from his eyes. She takes her time to respond and come to him when he calls her again. There is no malice. He is smiling. So is she, despite the sulk mask.
No one who has interacted with him so far is related to him. Yet everyone around in the community is his family, tightly bound.
By ownership, he ought to be alone in that grand old house. Someone or the other, from near and far, always ensures he is not.
He is wheeled out, shouting out instructions for yet another get-together in the evening. The dogs waiting outside can barely contain their jumps and wags of glee.
The clock ticks on as if urging the lizard to get a move on. It remains where it was.
Tomorrow, more will come. So will more laughter.
She chose hand surgery because she could perform that sitting, confined as she was to her wheelchair. The Sitting Surgeon would go on to give wings to many.
Dr Mary Verghese was keen to study obstetrics and gynecology. An accident shattered her dreams and left her a paraplegic. After that she underwent multiple excruciating surgeries so that she could get better at being a surgeon, who could not stand.
In Take My Hands Dorothy Clarke Wilson tells The Remarkable Story of Dr Mary Verghese of Vellore. Here are some extracts from the book that reveal what a struggle it was for Dr Mary to recover from two spinal surgeries.
The [first] fusion operation was performed on March 14, 1955. Bone chips taken from her hip were inserted between five lumbar vertebrae, in order to effect rigidity.
[After the surgery] body encased in two slabs of plaster, either one removable, Mary was again placed on a revolving bed. Twice each day she was turned. In the morning, the nurses would remove the top slab and bathe her. Then, turning her over, they would remove the other slab and bathe her back. For two or three hours she was left lying face down. The back slab was then replaced, and the bed turned to leave her again lying on her back. The procedure was repeated in the evening.
It was for the hours of greater freedom twice a day, lying on her face, that Mary lived. Head taped and pillowed, a book lying on a low table below the open bed frame, arms resting on the table, she could read or study. Avidly she read book after book [including] volumes on the causes of nerve paralysis.
Immobile, widening horizons
Not that the longer periods on her back were wholly wasted. She used them to pray for other people and to strengthen her own spiritual life. She enjoyed the visits of her many friends. She shared the problems of students and nurses, listened eagerly to news of all the latest romances and even tried to promote a few.
Friends brought flowers every day, and one doctor even fixed a pot of blossoms under her bed so she could see it when she was lying on her face. Dr. Rambo, the American eye specialist, brought a travel poster of the Jungfrau and fastened it to the wall. 'You need something to widen your horizons,' he told her with a smile. 'This will help.' It did.
How it did! It stretched the walls to include unbelievable vistas. The pinnacle of whiteness was like a glimpse of heaven.
Reflecting life around
Nurse Effie Wallace, as ingenious as she was practical, had attached a mirror to a bar over Mary's head, reflecting not only her face but the trays of food set on her chest, so she could feed herself normally, with her fingers. Even better, the mirror could reflect objects outside the window: the big tree, a bougainvillea bush, people passing along the path towards the leprosy clinic.
The second operation was for fusion of her lower thoracic vertebrae, utilizing bone chips taken this time from her leg. Back in her room, Mary began again the weeks of immobility and waiting: the imprisoning slabs of plaster; endless hours on her back; the two shorter periods of respite each day on her face, the open book on the low table beneath her, the pot of flowers a splash of brightness on the bare cement floor; the cheering visitors; the young nurses and student doctors dropping in for advice and gossip; the praying for the needs of others; the sounds of hurrying feet; the reflections of a tree, a garden, striding figures.
[Some years later, the aircraft was ready to take off as Dr Mary returned after her Fellowship at the Institute of Physical Medicine and Rehabilitation, New York.]
The doors were closed, the seat belts fastened. The great plane began to move clumsily towards the runway, like a bird out of its proper element … or like a human being intended to run on swift limbs but doomed to lumber on wheels. It came to a stop, shuddered as if in mortal agony, then with a roar burst its bonds, mounted upward into freedom. Mary felt a kindred surge of triumph. She saw far below a huge city shrunk to incredible smallness, a blue expanse dotted with toy ships, then nothing but sunlight and clouds and infinite skies. She closed her eyes in wondering gratitude.
I asked for feet, she thought humbly, and I have been given wings.
The Mary Varghese Institute of Rehabilitation is part of the Physical Medicine and Rehabilitation Department of the Christian Medical College Vellore. The Mary Verghese Trust that was started by her in 1986 continues to conduct vocational training programs for persons with physical disabilities. In recognition of her contributions to medicine, in particular, to the field of physical rehabilitation in India, Dr Mary Verghese was awarded the Padma Shri by the then President of India, Shri V.V. Giri in 1972. She died in December 1986 at Vellore.
These days there are so many World Days. Insert a word between World and Day and there! Not all those days matter to all. Except for some. Like today.
Today, October 8, 2022, is World Hospice and Palliative Care Day.
Palliative care is the branch of medicine that is about care beyond cure. It helps one live in pain-free comfort, with dignity, until death. And offers solace to the family that must live through the dying and beyond.
That may make more sense if you or someone dear to you is suffering. Or is dying. When the only hope left is for some quality of life (some peace, no pain, sufficient comfort, dignity retained) until life breathes. Quality of life is something that matters to all of us in every stage of life. Most so in the last stage.
I am fortunate to have two friends in professions that work to provide quality of life in different ways. Dr Priyadarshini Kulkarni is a palliative medicine specialist and the founder of Ease and Comfort. Lovaii Navlakhi is a certified financial planner and transitionist, and the founder of International Money Matters.
What has money got to do with palliative care? Or with quality of life when you are in no position to earn?
We will let them answer.
Dr Priyadarshini Kulkarni
“I know a family that has just two aging parents at home. They have multiple problems and are totally dependent on others for every little thing. They prefer to be at home. Among an array of people employed to help them is one person whose only job is to be with them and keep an eye on them. This person has no training as a caregiver. Yet, this help alone is costing them more than ₹50,000 every month. Imagine the total spend! How many families can afford that?”
“When we think money, we tend to focus on the quantity. The more we have, the happier we feel. I think what is more important is what your money is doing for you. Is the quantity of money you have giving you the quality of life you want? That is why responsible financial advisors first understand what you want to do in life, before working out the most prudent way to invest your money to help you reach those life goals.”
“Treatment of a major disease like cancer will drain a lot of money. As dementia progresses there will be an increasing need for constant care. It is not always about palliative or end-of-life care. As life expectancy lengthens, as more and more families turn nuclear, there is also an increasing need for independent, geriatric care. It is a long wait. That does not come cheap.”
“Insurance is important, but your health insurance policy may stop supporting you after a certain age. Your best bet when you grow old is your younger self, what your younger self wisely put away all those years ago.”
"In most cases, the role of palliative care is to ease pain and provide comfort. But what often hurts the most is the loss of dignity. There was a very successful entrepreneur, who was once the king of his domain. He was now helpless, terminal. He wanted to know if it was possible for me to speed up the end. What was unbearable for him was to have his wife and daughter-in-law, the only family he had at home, take complete care of him as he just lay there. He did not want to be at the mercy of others. The problem was solved by handing over all care to medical professionals. Fortunately, the family could afford that. How many of us can?”
“Parents are so eager to educate their children, get them married and set up a home for them that they start saving right from the time their child a born. What they forget is to provide for themselves. By the time they realize that, it is too late because the cost of care is always rising. They end up being what they never wanted to be—a burden on their children.”
Quality of life can mean different things to different people. Even for the same person, it can mean different things at different times as life goes through its inevitable phases and transitions.
We do not want to talk of death. Nor are we comfortable talking about money with family. We cannot escape either, death or money. Between the two, why not plan the reality that we have more control over—money?
Palliative care helps you live as well as possible until you die. And it preserves dignity by respecting one’s life till the end. Financial planning can facilitate this, for oneself and for others.
Maybe it is time for a couple of name changes. Let’s change financial planning to life quality planning. And let us celebrate today as World Quality of Life Day.
Before she could reach the toilet, Dadi soiled herself. With great difficulty, ignoring her protesting joints and constant fear of falling, she cleaned it up.
She did not want to wait for her servant to discover the mess she had made. Her servant scolded her loudly, especially when Dadi's son was not at home. She did not want her servant to abandon her. Dadi was so dependent on her servant for everything.
In Rani’s case, she was the servant, and she was the one who had been abandoned.
Dadi's news reminded me of Rani's story that I had heard some years ago.
Rani was 11 or 12 when an earthquake destroyed her home and family in a small town in north India. One year later, after he collected the earthquake relief money from the government, her uncle, the only other survivor, kicked her out.
Rani landed in Mumbai, where the people of the big city and their ways made her uncomfortable. Finally, she reached Pune and found employment with a family.
She became the full-time caretaker to the old woman of the house. They forged an affectionate bond. The old woman promised Rani better days and a better living. Rani’s prime years passed her by as she lived for her dreams.
Many years later, the old woman died. And Rani was back on the streets.
From street to destitute
She found a job at a school. After some years, she started working at the home of the head of the school.
When her bleeding and the pain in the abdomen did not ease, her employer took her to a government hospital. The diagnosis: cancer of the cervix, malignant and very advanced.
Her employer then brought her to what Rani thought was another hospital. At the time of admission, she reassured her employer, “I will come back and work as soon as I get better.” Her employer snapped back, “I never want you to come back.”
The palliative care centre admitted Rani as a destitute.
Finally, living her life
As the pain subsided and she started feeling better, Rani did not know how to deal with the attention she was getting. The nurse often found her sleeping on the floor at night. “The bed makes me feel like a queen. I am more comfortable here.”
Now that she had a new family, Rani suddenly became a child and started making fancy demands. Vada pav, puri bhaji, lassi and Coca Cola were among her favourites. “And please don’t get those from the canteen, buy it from outside.”
The raging cancer would not let her keep anything down. One bite and she would throw up. One sip, and she would apologetically close the bottle and keep it away, to try again later.
“No more fancy food; just eat what we give you,” the nurse said in mock anger. Rani laughed; the nurse helplessly joined in.
The attendant gave her a bath, combed her sparse hair, and tied it into a thin bun. The security guard came with a flower. Would it look nice on her hair?
One night, Rani died peacefully. She was 70.
Gone, troubling none
The employer sounded relieved on hearing of the death and reaffirmed that the institution was free to do what they thought fit.
The institution had a signed document that authorized them to do what they felt right with the destitute before and after her death. The police had endorsed the document.
The crematorium got a copy of the document too, along with the death certificate and a copy of the driver’s license of the person who took the body there.
They all took care to make sure they would not be in trouble later.
As for Rani, after some 50 years of serving others and 20 days of living for herself, she did not care anymore.
Rani was not her real name. And very few know Dadi's name. Everything else above is the truth. For Rani then as for Dadi now, every day that they do not cause trouble for others and get scolded, is precious. Those are the days they experience a little love and dignity and forget they are no longer useful to others.
How do you deal with cancer? What do you say and what do you want to hear? When you are the patient and when you are a dear one? Do you cling on or let go? Do you deny or accept?
This is how Reacher's mother and her two sons (Jack and Joe) spoke about her impending death. In what is probably a goodbye meeting with her sons, she talks about her cancer that is about to take her away. It is not an easy conversation. Yet, it is just the kind of "death literacy" conversation that Dr M R Rajagopal advocates.
This was written some years ago, soon after I finished reading Lee Child's book, The Enemy. After I recently watched the Amazon series on Jack Reacher, I revisited the blog.
I have extracted what is relevant to this post and introduced subheads. The text I have added is in italics or within square brackets.
Thank you, Lee, for permission to use this very real and touching part of your exciting work.
After hearing from her doctor that she was dying, Jack Reacher and his brother Joe are in Paris to meet their mother. They know something is wrong, they know about an accident. This description is in Jack’s words.
We heard slow shuffling steps inside the apartment and a long moment later my mother opened the door.
She was very thin and very grey and very stooped and she looked about a hundred years older than the last time I had seen her. She had a long heavy plaster cast on her left leg and she was leaning on an aluminium walker. Her hands were gripping it hard and I could see bones and veins and tendons standing out. She was trembling. Her skin looked translucent. Only her eyes were the same as I remembered them. They were blue and merry and filled with amusement.
‘My boys,’ she said. ‘Just look at the two of you.’
She spoke slowly and breathlessly but she was smiling a happy smile. We stepped up and hugged her. She felt cold and frail and insubstantial. She felt like she weighed less than her aluminium walker.
She turned the walker around with short clumsy movements and shuffled back through the hallway. She was panting and wheezing. I stepped in after her. Joe closed the door and followed me. My mother made her way to a sofa and backed up to it slowly and dropped herself into it. She seemed to disappear in its depth.
‘What happened?’ I asked again.
She wouldn’t answer. She just waved the enquiry away with an impatient movement of her hand. Joe and I sat down, side by side.
‘You’re going to have to tell us,” I said.
‘We came all this way,’ Joe said.
‘I thought you were just visiting,’ she said.
‘No, you didn’t,’ I said.
They find out
She had broken her leg when a car hit her.
Then the X-ray revealed that she had cancer.
Nobody spoke for a long time.
‘But you already knew,’ I said.
She smiled at me, like she always did.
‘Yes, darling,’ she said. ‘I already knew.’
‘For how long?’
‘For a year,’ she said.
‘What sort of cancer?’ Joe said.
‘Every sort there is, now.’
‘Is it treatable?’
She just shook her head.
‘Was it treatable?’
‘I don’t know,’ she said. ‘I didn’t ask.’
‘What were the symptoms?’
‘I had stomach aches. I had no appetite.’
‘Then it spread?’
‘Now I hurt all over. It’s in my bones. And this stupid leg doesn’t help.’
‘Why didn’t you tell us?’
She shrugged. Gallic, feminine, obstinate.
‘What was to tell?’ she said.
‘Why didn’t you go to the doctor?’
She didn’t answer for a time.
‘I’m tired,’ she said.
‘Of what?’ Joe said. ‘Life?’
She smiled. ‘No, Joe. I mean I’m tired. It’s late and I need to go to bed, is what I mean. We’ll talk some more tomorrow. I promise. Don’t let’s have a lot of fuss now.’
We let her go to bed. We had to. We had no choice. She was the most stubborn woman imaginable.
She's only sixty
The two brothers found her refrigerator “stocked with the kind of things
that wouldn’t interest a woman with no appetite.” They started talking.
‘What do you think?’ Joe asked me.
‘I think she’s dying,’ I said. ‘That’s why we came, after all.’
‘Can we make her get treatment?’
‘It’s too late. It would be a waste of time. And we can’t make her do anything. When could anyone make her do what she didn’t want to?’
‘Why doesn’t she want to?’
‘I don’t know.’
He just looked at me.
‘She’s a fatalist,’ I said.
‘She’s only sixty years old.’
She had made up her guest room with clean fresh sheets and towels and she had put flowers in bone china vases on the night stands. It was a small fragrant room full of two twin beds. I pictured her struggling around with her walker fighting with duvets, folding corners, smoothing things out.
We’re too late; she made sure
Next morning, their mother was still asleep when Jack went and got breakfast.
‘She’s committing suicide,’ Joe said. ‘We can’t let her.’
I said nothing.
‘What?’ he said. ‘If she picked up a gun and held it to her head, wouldn’t you stop her?’
I shrugged. ‘She already put the gun to her head. She pulled the trigger a year ago. We’re too late. She made sure we would be.’
‘We have to wait for her to tell us.’
She told us during a conversation that lasted most of the day.
We started over breakfast. She came out of her room, all showered and dressed and looking about as good as a terminal cancer patient with a broken leg and aluminium walker can. The way she took charge spooled us all backwards in time. Joe and I shrank back to skinny kids and she bloomed into the matriarch she had once been. A military wife and mother has a pretty hard time, and some handle it, and some don’t. She always had. Wherever we had lived had been home. She had seen to that.
First you live, then you die
‘I was ten when the Germans came to Paris. I thought that was the end of the world. I was fourteen when they left. I thought that was the beginning of a new one.’
‘Every day since then has been a bonus,’ she said. ‘I met your father, I had you boys, I travelled the world. I don’t think there’s a country I haven’t been to.’
‘I’m French,’ she said. ‘You’re American. There’s a world of difference. An American gets sick, she’s outraged. How dare that happen to her? She must have the fault corrected immediately, at once. But French people understand that first you live, and then you die. It’s not an outrage. It’s something that’s been happening since the dawn of time. It has to happen, don’t you see? If people didn’t die, the world would be an awfully crowded place by now.’
‘It’s about when you die,’ Joe said.
My mother nodded.
‘Yes, it is,’ she said. ‘You die when it’s your time.’
‘That’s too passive.’
Some battles can't be won
‘No, it’s realistic, Joe. It’s about picking your battles. Sure, of course you cure the little things. If you’re in an accident, you get yourself patched up. But some battles can’t be won. Don’t think I didn’t consider this whole thing very carefully. I read books. I spoke to friends. The success rates after the symptoms have already shown themselves are very poor. Five-year survival, ten per cent, twenty per cent, who needs it? And that’s after truly horrible treatments.’
We talked it through, from one direction, then from another. It was a discussion that should have happened a year ago. It was no longer appropriate.
I waited for Joe to ask the next obvious question.
‘Won’t you miss us, Mom?’ he asked.
‘Wrong question,’ she said. ‘I’ll be dead. I won’t be missing anything. It’s you that will be missing me. Like you miss your father. Like I miss him. Like I miss my father, and my mother, and my grandparents. It’s a part of life, missing the dead.’
We said nothing.
‘You’re really asking me a different question,’ she said. ‘You’re asking, how can I abandon you? You’re asking, aren’t I concerned with your affairs any more? Don’t I want to see what happens with your lives? Have I lost interest in you?’
We said nothing.
‘I understand,’ she said. ‘Truly, I do. I asked myself the same questions. It’s like walking out of a movie. Being made to walk out of a movie that you’re really enjoying. That’s what worried me about it. I would never know how it turned out. I would never know what happened to you boys in the end, with your lives. I hated that part. But then I realized, obviously I’ll walk out of the movie sooner or later. I mean, nobody lives for ever. I’ll never know how it turns out for you. I’ll never know what happens with your lives. Not in the end. Not even under the best of circumstances. I realized that. Then it didn’t seem to matter so much. It will always be an arbitrary date. It will always leave me wanting more.’
We sat quiet for a spell.
‘How long?’ Joe asked.
‘Not long,’ she said.
We said nothing.
‘You don’t need me any more,’ she said. ‘You’re all grown up. My job is done. That’s natural, and that’s good. That’s life. So let me go.’
We owe it to her
As she wanted, they went out to dinner.
[We rode a cab part of the way and then walked.] My mother wanted to. She was bundled up in a coat and she was hanging on our arms and moving slow and awkward. But I think she enjoyed the air.
We all ordered the same three courses. We ordered a fine red wine. But my mother ate nothing and drank nothing. She just watched us. There was pain showing on her face. Joe and I ate, self-consciously. She talked, exclusively about the past. But there was no sadness. She relived good times. She laughed.
‘Why didn’t you tell us a year ago?’ Joe asked.
‘You know why,’ she said.
‘Because we would have argued,’ I said.
‘It was a decision that belonged to me,’ she said.
Next morning when Jack woke up he heard Joe talking to the nurse.
She told me she was my mother’s private nurse, provided under the terms of an old insurance policy. She told me she normally came in seven days a week, but had missed the day before at my mother’s request. She told me my mother had wanted a day alone with her sons.
Later, Joe found Jack getting ready to leave.
‘You leaving?’ he said.
‘We both are. You know that.’
‘We should stay.’
‘We came. That’s what she wanted. Now she wants us to go.’
I nodded. ‘Last night [at dinner]. It was about saying goodbye. She wants to be left in peace now.’
‘You can do that?’
‘It’s what she wants. We owe it to her.’
[At breakfast] my mother had dressed in her best and was acting like a fit young woman temporarily inconvenienced by a broken leg. It must have taken a lot of will, but I guessed that was how she wanted to be remembered. We poured coffee and passed things to each other, politely. It was a civilized meal. Like we used to have, long ago. Like an old family ritual.
We left thirty minutes later. We hugged long and hard at the door and we told her we loved her, and she told us she loved us too and she always had. We left her standing there and went down in the tiny elevator and set out on the long walk back to get the airport bus. Our eyes were full of tears and we didn’t talk at all.
This is a slightly modified version of the original post, which you can find here.
As I devoured one Lee Child book after another, I got lost in the world of Jack Reacher. He is the Grim Reaper to those who dare to cross him. The large man has an equally large heart intent on doing the right thing. Given all the bone-crunching action in Reacher's world, this part in The Enemy, was a surprise.
With Lee Child's gracious permission I reproduced this extract as a tribute to my friends, especially those in palliative care, who deal with death in close proximity almost every day. They try to make every departure, always too soon, as comforting as the movie the dying must leave.
Thanks, Lee! Thanks, friends!
Yesterday was Valentine's Day. No, this is not a delayed post. For them dates did not matter, every day did.
Every evening her bed at the palliative care center would be wheeled out of the ward and positioned next to the garden. Then he would come, sit next to her, and hold her hands. That was all. And, for them, that was all that mattered.
He knew she didn’t have much time
Maybe she did too
That didn’t matter
That was out of their hands
The sun played hide and seek
With the leaves and the flowers
And people flowed around them
That didn’t matter
At times they spoke
Most times they didn’t
That didn’t matter
They still had each other
To love, to care for
That was in their hands
That was all that mattered
So they held hands, always.
I am a carrom board. Just a piece of wood. Happy to help.
They enjoy playing on me, whenever they can, wherever they can—in the corridor, on the lawn or in a room.
When they are all around me, playing or encouraging the players, you can’t tell the patients from the family.
Of course, if you were around the day I was on the tray table and you found them applauding every feeble strike that just managed to touch a coin, you would have known that they were trying to cheer up the once-brilliant high-school teacher on the bed, who was depressed because now she could not even manage to teach her 10-year old son.
Otherwise, who is patient, whose patient, who is family, whose family—these are all irrelevant questions.
One of my players once described me more philosophically. We are all helpless coins, she said. Every pocket is a state of mind: joy, anger, sorrow, and acceptance. The striker is not in your control, and no one knows where you will land next.
I don’t understand all that. I am a piece of wood, just a game that may help you forget tomorrow and live today. I am just happy to help.
Originally written some years ago for the Cipla Palliative Care and Training Centre, Pune.
Does your cure end with your surgery, dressing your wound or restarting your heart? Or is that just the beginning of your recovery? Guess what, they don’t teach recovery and convalescence in medical school.
“Many of my tutors seemed to assume that once a crisis of illness has passed, the body and mind find ways to heal themselves,” Dr Gavin Francis, the author of Recovery: The Lost Art of Convalescence recently wrote in The Guardian. “But nearly 20 years as a GP has shown me time and again that the reverse is true: guidance and encouragement through the process of recovery can be indispensable.”
Dr Mazda Turel, a neurosurgeon, agrees. “We are not taught this in medical school,” he says. “But if you are attuned enough as a student while you sit in the clinic or OPD with your mentor you can learn it from your teachers in the way they respond to a patient’s needs in the recovery phase, from their ability to patiently answer umpteen questions (most of them repetitive). Eventually you imbibe care and concern, and that’s enough.”
Dr E K Ramanandan, a senior ayurveda physician too thinks most doctors pick up on their own how to help a patient through recovery.
Dr Nagesh Simha, Medical Director at Karunashraya, considers helping the patient and family through recovery a matter of compassion. “Yes, the doctor’s personal values matter. However, I believe compassion is something that can and ought to be taught.”
Recovery matters in an infected world
As new strains of coronavirus continue to give us all a physical and emotional pounding, the concepts of recovery and convalescence require deeper contemplation.
Convalescence is anything but passive. It’s an action that needs us “to be present, to engage, to give of ourselves.”
Anyone who has been through the viral infection is aware of the fatigue that follows. Physiotherapists encourage those in post-viral recovery to push the limits of physical effort. Else, “sufferers can become trapped in a cycle of effort followed by collapse,” with each collapse requiring lesser effort.
Recovery must act in concert with natural processes. Florence Nightingale believed that “nature alone cures.” She said what nursing had to do was to “put the patient in the best condition for nature to act upon him.” Nature's healing touch apart, people recover more quickly if they think their physician is sympathetic and there for them.
Dr Simha remembers the time he was recovering after a major surgery. “There I was, flat on the bed and everyone would be looking down upon me. Except for one doctor who always made it a point to sit so that he could have a conversation at my level. That made a big difference.”
“Every illness is unique,” Dr Francis points out. It follows every recovery is unique too. There is no easy solution or a formula. “It’s a landscape we all have to visit sooner or later. From time to time, we all need to learn the art of convalescence.”
Thou shall not abandon
AETCOM, a manual on attitude, ethics and communication published by the Medical Council of India for the Indian medical graduate, cites a case study. It is a letter to the oncologist from the husband of a patient who succumbed to breast cancer. Here is the gist.
“As you may recall, Alka was diagnosed with breast cancer 5 years ago. We rushed to you knowing your reputation as a talented oncologist and we were not disappointed. Your aggressive approach to the disease made all the difference. Alka beat the disease and she lived disease-free for 2 years. We were very happy and still are very grateful to you.
“Then the disease came back with a vengeance. Even at this time you did not give up hope and took on the disease like a warrior but then there came a time that it was clear that the disease had won. We were devastated.
“Alka looked up to you as a doctor to provide her with support, but it looked like that you were unable to confront the failure. While you did prescribe pain medications and your office helped us find a home nurse, you were reluctant to meet Alka or talk to her. When we called for appointments, your office would tell us to contact our family doctor for pain medications.
“When we did get to see you, you would not even look at Alka’s eyes. You would distractedly talk to her, refill her pain medications and dismiss us quickly. It was as if we were seeing a different doctor than the one we had seen when all was well. And when Alka was admitted to the hospital where she breathed her last you would not even come and see her.
“We made so many requests for you to come and visit with her. I even called and told you that it would mean so much for her to see you before she departs but you did not. Would it have been too much for you to come and hold her hand for a minute or say a kind word?
“We come to you not with the expectation that a cure is always possible but always with the expectation that you will support us in coping with the disease and the tremendous effects it has on our lives. We don't always expect you to succeed but we always expect you to show us care and compassion. You abandoned Alka and us at the time we needed you most. You, sir, abandoned us when we were most vulnerable.”