There was a time when our ancestors had designed death rituals to let the consciousness exit the body and move on to a different state. In this intermediate state, there is awareness (though not in the “living” sense) but the consciousness requires guidance.

In his new book, Does the moon exist?, Dr Abhijit Dam prefers to call dying as “transference of consciousness.” He regrets that today most deaths happen in hospitals, surrounded by “death-prolonging machinery.” This alien setting is very confusing and frightening to the transitioning consciousness. It is more comforting if this happens in the peaceful, familiar setting of home in the presence of loved ones.

When you read this book, you might find it difficult to believe that Dr Dam was once immersed in intensive care, busy trying to kill death. After a decade he realized that rather than saving lives, he was prolonging the process of dying.

It would be even more difficult to accept that he was a staunch atheist for long until a life event made him seek refuge in God. He also realized his “stuttering inadequacy in handling religious and spiritual issues” raised by his patients. He undertook a one-year course in Advanced Vedanta from Chinmaya Mission and then I completed a six-month course in Contemplative and End-of-life Care conducted by the Naropa University, USA. He went on to find the hospice Kosish in 2005.

More recently, Dr Dam has developed a “culturally appropriate death doula course for India”. Death doulas assist a person during the process of dying. “They help in restoring sacredness to the dying process in a culturally and religiously appropriate manner.” The course, named Farishtey marries the “modern principles of quantum physics and the ancient wisdom of Vedanta”. This book provides the rationale for that marriage.

The book (which Dr Dam often calls his “dissertation”) is a difficult read. Especially because most of us do not want to read about death! Unless one is facing it or has had to be (or is) responsible for looking after someone on the verge of departure. If you are brave enough to look life in the eye, this book will tell you why the end is not really the final end. Given that the bodily end is a certainty (just as the moon is surely there, whether you look at it or not) this book could well prepare one for a peaceful transfer.
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After all you are not just your body, are you?

A routine visit to the ENT physician resulted in an immediate admission to the hospital for “acute follicular tonsilitis with quinsy.” Now we move to the main story which is less about health and more about health insurance.

The estimate for claim clearly mentioned the admission was for medical management with surgery as an SOS option, if required.

REJECTED: We don’t cover ENT surgeries for the first two years.

The main treating physician takes the time to write a note explaining that the admission is for medical management and no surgery is scheduled.

REJECTED: For the same reason by one person associated with the insurance company.

REJECTED: For the same reason by another insurance company person, who was considerate enough to reduce the waiting time to 12 months. (In other words, if you are alive to seek treatment after 12 months, you might raise a claim again.)

As the doctor expected, the patient recovers fast just with the medicines and is discharged on the third day. The patient pays and goes home. He has to work to pay the bills (including the health insurance premium).

Believing that the amount would be reimbursed now (as it was only medical management), the claim is re-presented.

REJECTED: “Patient paid and discharge.”

Applause!

According to your website, Care Insurance “is one of India's leading Health Insurance providers, with a claim settlement ratio of 95.2%.” Going by this experience, the numbers that constitute the 4.8% unsettled patients must be huge.

Your marketing department is doing a wonderful job.

But that is nothing compared to the astounding work of your Chief Excuse Officer. Refuse to settle for this reason and that until the patient pays and goes home. Then throw the masterpiece (don’t get distracted by the English): “Patient paid and discharge.”
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Bravo!

​Mention law and most of us immediately visualise a court-centric complex system populated by lawyers and judges who tackle the incomprehensible rules and provisions populating thousands and thousands of intimidating pages.

Now think of a situation where you are helpless, bed-bound and your life (or its peaceful closing) hinges on someone pulling off a legal miracle. Just when you have given up all hope, an advocate reaches out to you and resolves the situation you are facing with a large dose of selfless compassion. What would you call her? A saviour? An angel? A miracle?

Well, she prefers to be called Sandhya.

Advocate J. Sandhya is a practising lawyer based in Thiruvananthapuram, Kerala. She is also a social activist, and a former member of the Kerala State Commission for Protection of Child Rights. For the many she has helped and continues to help, she is the humane face of law.
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Many. Like Maya. And Asha.

​It was during the Covid years that a neighbour with the help of a social worker found Maya all alone at her rented home. She was smitten by some disease that had paralysed her. The home was flooded and infested. It was not easy to move her out.

When she was admitted to a palliative care facility, Maya was not in a condition to move, talk, or remember anything. After several days of care, including physiotherapy, Maya dodged what had appeared to be lurking round the corner: death.

When Advocate Sandhya stepped in, Maya had started to make efforts to talk.

The first thing that Sandhya did was go to Maya’s home and shift all her stuff out. The landlord had insisted on this. Which posed a major question. Where would Maya live now?

Based on the information Maya gave her, Sandhya contacted Maya’s uncle. He came and but did not wait for too long. He declared (in legalese) that he had nothing to do with Maya and he was not to be called again.

It was heartbreaking for all to see Maya’s plight, but Sandhya was not ready to give up.

Her conversations with Maya had revealed that Maya’s parent used to work in a prominent central government office.

Sandhya contacted the organisation and informed them about Maya. Yes, as the only surviving member of the immediate family, Maya was entitled to a pension, provided there was documentary evidence linking her to the late employee of the organisation.

Sandhya had to start from scratch. Painstakingly, she gathered enough evidence to establish Maya’s identity and her connection with the parent. It required a lot of paperwork and plenty of trips to the organisation’s office, all funded by Sandhya.

Then, taking pity on their ex-colleague’s daughter, a few compassionate people in the organisation started coming to Sandhya and Maya to help them with the formalities. Finally, the official announcement came: Maya was entitled to a monthly pension of ₹30,000.

On the health front, Maya was making very slow progress. But now she was very excited. The pension was giving her a second life. Perhaps she could afford the rent for another house and start all over again.

Sandhya said, “For most of us, palliative care signifies that the end of life is very near. Not necessary! Sometimes, we witness miracles. And, with hope and care, some patients like Maya bounce back.”
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Given Maya’s condition, no one had imagined that she could get a regular income. “My thinking was about getting Maya back on her feet,” Sandhya explained. “From whatever I could gather from Maya, I surmised this pension was a strong possibility. As a lawyer, all I had to do was make a good case for it in terms of documentation. Fortunately, it worked out.”

​Asha was ill, very ill. All she had as family was her son.

Instead of going to school, the son would just hug and sleep with her at the government hospital where she had been admitted. What if she died when he was away?

By the time Sandhya stepped in, the mother and son had been in the hospital for more than 40 days. Even if they discharged her, the doctors did not know where they could send her. The advocate managed to crowdsource some funds and get a private sponsor so that Asha could move to a rented house and the son could carry on with his education.

Asha and her son moved to a small home. While Asha continued to face challenges with her mobility, life appeared to be slowly getting on track for both of them. But they remained desperate for money.

One night, around 1 a.m. Sandhya got a frantic call from Asha. The latter had just received a call from the police cyber cell. They were coming to arrest her for being instrumental in moving one crore rupees of scam money through her bank accounts.

Some weeks previously, Asha had received a call from an unknown number offering her commission if she opened new bank accounts and shared the details with them. Given their dire need for income, this was too irresistible a proposal for Asha and her son. Caution stood no chance before desperation.

So, the son helped mother visit four different banks on her wheelchair. Of course, neither of them had any idea they were being played.

Advocate Sandhya contacted the cyber cell and shared all the information with them, complete with photographs and documents. She made it clear that Asha was not a villain but a helpless victim in poor health. When they insisted on arresting and moving her to the north of India where the scam had originated, Sandhya agreed. However, she warned them that she was unlikely to survive the journey.
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Today, Asha is about 45. The son is 18 and has completed his ITI course. Her physical and financial struggles have not ended. But Asha is immensely grateful that she has the backing of someone like Sandhya.

​Says Dr M R Rajagopal, Chairman Emeritus of Pallium India: “We are grateful to Sandhya for providing voluntary service whenever we seek her support on behalf of poor patients. There is always a sense of urgency when we reach out to her and she would gladly and efficiently help us, mostly by avoiding tedious litigation and by practical mediation.”

He cited two instances.

A young woman was dying of cancer. Her only daughter, eight years old, was clearly at risk of being harmed by her father from whom she and her mother had been separated for six years. Sandhya  approached the Child Welfare Committee of the district. In two days, she managed to obtain an order that granted custody of the girl to the grandmother in the event of the mother’s death. The mother died after five days, in peace.

A middle-aged woman, who had been abandoned by her family, was dying of cancer. Her only support was a home nurse, who was looking after her ever since she was diagnosed with the illness. There was every possibility that some member of the estranged family would return to claim the property after she passed away. So, she wanted to prepare a will, leaving her property to the home nurse. Sandhya helped her prepare and sign the document within the limited time that she had left in this world. She too could now leave in peace.

Disputes are all too common when life is setting. Not just about division of estate but also about how long one should be kept alive on life support. How long should one extend the suffering of not just the patient but also the members of the family? As a person hovers between life and death, the challenges integral to both get magnified. Often the situation is beyond medicine (and palliative care) and a little practical nudge from someone well versed with the law and its application brings immense relief to all.

Sandhya believes that law need not be impersonal and intimidating. “Institutions like Pallium India are doing a wonderful job taking care of health and life. Very often, law can make a significant contribution at the right time. Yes, the knowledge of law is important. More important is the willingness to help and to use one’s skill for the sake of humanity. Anyone can help in one way or another. I just happen to specialise in law and its practical aspects.”
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May Sandhya inspire more of us to help, one way or another. 

​I love your washing machine. And I love your refrigerator.
 
Over the last two decades, when one got too old, replaced it with another from you. Again. And again. Loved the products based on actual use. Therefore, loved the brand.

Except in the recent past.
 
I understand old machines can breakdown. But then you have been so considerate to extend your care to your customer over WhatsApp. Or so I thought.

“Please confirm your name.” I am presented a wrongly spelt version of my name.

“Are you a dealer or a customer?” Huh?

“Provide full address.” I do that. But must again reconfirm the LOCATION, the CITY, and the STATE. Yes, in all CAPS.

“Describe your model.”

“When did you buy it?”

“This is out of warranty. You will have to pay X amount.” I have an AMC in place.

“Provide details.”

As I scramble to dig out the details …

“Are you still connected? As I am not getting any response from your end I am bound to close this chat. Thank you for chatting with Xxxxxxxxx. Have a nice day!”

Hey, wait! What about all those times you asked me to wait and vanished to do God knows what, while I held on.

Three calls within a month. All following the same pattern.

Technology is smart. Just from the mobile number, it can dig out all information including your last service request. That is the optimistic theory for the gullible. Tech must have a poor memory, though. Why else do I have to provide the same details in virtually the same sequence during every chat? Even if the chat is repeated within a span of 30 minutes?
 
Of course, there must be a script at the other end that must be honoured. Who dares face the consequence of breaking the sequence!

Until you buy, we woo you.

After you buy, shut up and don’t bother us.

If you dare complain, well, we’ll simply Whirl you, fool!

How would you like a lawyer by your side when you are critically ill? No, not to finetune the will. But to compassionately mediate as you, your family and the doctors struggle to take critical decisions about your very life.

Nancy Dubler, the lawyer-turned-bioethicist who “pioneered bedside methods for helping patients, their families and doctors deal with anguishing life-and-death decisions” would have loved to help you.
In its tribute to her after she passed away on April 14,  The New York Times described her as the “mediator for life’s final moments”. She was 82.

Dubler founded the Bioethics Consultation Service at the Montefiore Medical Center in Bronx, USA. The Harvard-educated lawyer did this to “level the playing field and amplify nonmedical voices in knotty medical situations.” The team included lawyers, bioethicists and philosophers who carried pagers to alert them about ethical emergencies.

In her 1992 book, Ethics on Call: A Medical Ethicist Shows How to Take Charge of Life-and-Death Choices, Dubler observed that modern medical technology “lets us take a body with a massive brain hemorrhage, hook it up to a machine, and keep it nominally ‘alive,’ functioning organs on a bed, without hope of recovery.” And the bioethicists help to untangle the “web of rights and responsibilities that ensnares all patients and caregivers.”

It was at the end of 2005 that’s Dubler warned about the exponentially increasing conflict in medicine. Nineteen years later, the confusion and the conflicts have only got worse. Economic factors like insurance now play a significant role.

As Dubler put it, “The dynamics of the doctor-patient and provider-patient relationships have been deformed by the increasing focus, in fact and in the media, on the cost-containment thrust of both managed care and acute care medicine. There are simply more parties to any decision and thus greater potential for misunderstanding, misinformation, disagreement, and dispute.”
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In A Hastings Center Special Report on Improving End of Life Care Dubler cites a case when the ICU team requested bioethics mediation because the family was not letting them discuss with the patient about his future care. The patient was alert and aware and had recently been removed from a ventilator. The decision they needed was about placing him back on ventilator in case the need arose.

The medical team told Dubler that the patient’s multiple cardiac problems had been “addressed to the maximum medically.” His two sons, loving, devoted and who stayed with the patient, vehemently opposed any such discussion as they felt it would upset their father.

The sons knew that their father was very sick but “the independent and proud person” needed hope to go on.
Dubler cited studies that established “when family members try to shield the patient from bad news, the patient usually knows the worst, and the silence is often translated into feelings of abandonment.”

Finally, they thrashed out a format and Dubler spoke to the patient.

After reintroducing herself to the patient who was “clearly very weak and tired,” Dubler asked if he would want his sons to make decisions for him if he was unable to do so. He was also okay with the order of decision-making, the older son first. Then came the important question of whether the patient would be willing to be intubated again if the doctors thought it necessary. The patient said, “I would think about it.”
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This mediation defused the conflict about sharing information with the patient. At least, the patient and everyone else had a resolution with which they could work. As Dubler observed, “The mediation prevented the bifurcation of family and staff. It was labor intensive, requiring two hours, but it provided clarity going forward.”

The bioethics mediator comes “fresh to the facts of the case, impartial to the situation of the case, uninvolved in the prior treatment decisions in the case, and unallied with any party in the particular disagreement.” The process helps the parties to identify their goals and priorities and to generate, explore, and exchange information and options. Of course, the agreement reached must have sufficient and realistic structural supports to become “the reality of care.”

As Dubler stated, bioethics mediation helps to:

• identify the parties to the conflict
• understand their stated and latent interests   
• level the playing field by minimizing disparities of power, knowledge, skill, and experience that separate medical professionals from the patient and family
• search for a time-sensitive common ground
• reach a principled consensus, legally and ethically.

Conflict in end-of-life decisions can be potentially destructive for surviving family members. Skilled bioethics mediators committed to managing, not banishing, disputes can help to tame some conflicts.

In her tribute to Dubler, Nancy Berlinger, a senior research scholar at The Hastings Center, says: “She always kept her eye on the reality of the experiences of being a patient, being a family caregiver, being the clinician in the room, and being responsible for the care of this patient and for discussions with this family. She would remind clinicians of their basic ethical duty—to be faithful to that person in the bed—and would remind bioethicists that when we were discussing ethical challenges, identifying principles, and crafting guidance, the same duty applied to us.”

Thank you, Nancy Dubler, for devoting your life to helping many lives depart in peace, without being shrouded in conflict.
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Reading about Dubler introduced me to the concept of bioethics mediation and raised some questions. Is this practiced in India? Is it part of palliative care? If it is not, should it be?
If feasible, should a compassionate lawyer be a part of the team responsible for the patient in the final stages?
I am hoping to be educated by my knowledgeable friends in palliative care. 

Mother was all over the media last Sunday, May 12. She still lingers on social; print has moved on.

Why give just one day to someone who gave you a whole life? Or should she be grateful to get at least one despite all the polls and politics?

The first thing I read that day was the piece by Dr Mazda Turel, the inimitable surgeon-scribe. Let me spare you the spoilers save one: you are sure to appreciate the O Henry twist at the end. Find “The surgical love” on his website named after him.

That article reminded me of an old man I knew, a security guard at a place of worship. I have often seen him having a simple lunch. There, under a shade, slowly munching his roti and subzi. Around him would be some squirrels and birds patiently waiting for him to share a morsel. Yes, he brought a little extra for them always.

He was no woman. But he was mother to them.

Is love a divine energy that transcends gender and species?
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You must be very fortunate if you are able to love and be loved. Doubly so if that energy originates from and returns to mother.

What if there was an agency that could kill whoever you wanted at a bargain rate? The more you want dead, the less you have to pay. How long would your list be so that you can make the most of the bargain?

It was not easy for Peter, the central character in Neil Gaiman’s short story, “We can get them for you wholesale” to find an assassination agency. Finally, he found one and went on to have a meeting with one of the sales guys from the firm.

Peter wanted to start with one guy in the office who he suspected was having an affair with the woman he was engaged to. Then the sales guy offered a two-for-one deal, just 250 pounds each. After some thought, Peter added the woman’s name.

At their next meeting, the sales guy offered an even better deal—an irresistible bulk rate of 450 for 10. Peter took some time to think of the 10, “hunting for wrongs done to him and the people the world would be better off without”. It included his boss, the Physics teacher from school, an annoying TV newsreader and a neighbour with a yappy dog.

After the list of 10 was ready, Peter was very satisfied with “an evening’s work well done”. He enjoyed the feeling of power he felt as he tightly clutched the list deep in his pocket right through work the next day.

At the next meeting, the sales guy mentioned more enticing offers. Finally, irresistibly drawn down the path of better bargains, Peter asked how much it would cost to kill everybody in the world. “Nothing,” came the answer. “We’ve been ready for a long time. We just had to be asked.”

Peter was mulling over what that meant when he heard cries all around and a soft knock on the door.

Usually, I drop off to sleep after I complete a few pages of the book I am reading. After this story, I was wide awake, thinking of the people who might employ such an assassination firm.

• The man who wanted to cut down the trees near his apartment so that the birds that woke him up early every morning would not have a place to perch?
• The sand-to-riches man who would not have to divert his trucks every now and then to knock down some officer who kept meddling in his mining business?
• The real estate baron frustrated by a crazy guy who keeps saving the lakes from drying up and thus sinking his scheme of scraping the skies with towers for billions?
• The politician hassled by the need to make all the visibly right moves and statements day and night to hide his many wrongs from those he expected to elect him again?
• Maybe, looking back, I too would like to eliminate that guy who elbowed me aside before I could grab my favourite window seat in the 7:06 local train to work?

They have been ready for a long time. And so many of us have already asked them. How long do we ignore the knock at our door?

​She had recently lost her job. Her family business was sinking. Her father had just been rescued and brought back home safely after yet another unannounced trip outside home, lost in the shadows of dementia. Her mother was struggling to take care of her own health even as she tried her best to look after her husband. And one of the many caretakers who joined and left, had walked away with all the savings of the family.

Then life became a song, several songs, for all of them, at least for a few days.

It was not an easy decision, but the daughter decided to take on the additional responsibility of moving her parents to her own place.

Steeped as the family was in music, it was but natural for all of them to gather around his bed and sing song after song and play antakshari. The change in the father was very visible. He smiled. Life returned to his eyes. His fingers remained rigidly curved but he would make an attempt to clap whenever he won the singing game. And he did win multiple times because he knew which songs to sing.

The musical notes drove away their loneliness. No longer were they two bodies in another corner of the town that others were obliged to look after. There was no changing tomorrow. Today they sang.

Then one night the father indicated that he wanted to go home to that lonely house where he lived with his wife. He was insistent. The daughter obliged. A late-night ambulance took them there. All the paraphernalia that had moved with them went back. 

Tired, the daughter decided to take it easy for a couple of days. Until her mother called. He had stopped trying to talk. Eyes closed. Not moving at all. The daughter rushed.

Holding his hand, she called out to him. With great effort, he tried to open his eyes. Apparently, he recognised her. Just one word escaped his mouth: “sing.” And she sang. His favourite song. His face transformed. He was almost smiling.

The next day he passed away in peace, at home.

Life has pulled her back to its many inevitable chores and testing challenges. But she is unable to fill that gap.

She knows somewhere he is listening. And applauding whenever she sings. So, she sings on.