You have serious health issues. On first assessment, the doctor gives you less than 100 days to live. More than 20 surgeries and 10,000 days later, who do you thank for letting you be you, not just alive? Yes, your own attitude matters. Then there is your doctor, the medical team, friends, and close family. If you are very lucky, you will also be grateful you had Nancy on your side.

If you have seen the movie, I want to talk and read the books by Arjun Sen, you will know who Nancy is (was, sadly). I had watched the movie before I read his books Raising a Father followed by Unquit Forever: Keep yourself in the game. The latter (the title of which sums up Arjun’s attitude towards life despite a prolonged standoff with death) told me more about Nancy.
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When Arjun met Nurse Nancy for the first time at the hospital, “I heard her scream, ‘Arjuuuun’ way before I saw her.” Then, she “pulled me into a bear hug.”

Then Nancy asked him a question. Did Arjun think of himself as friend and family? She explained: “You wake up with yourself, you are with yourself all day, and you go to bed with yourself. You are your best friend and companion. There is no hiding from that.”

“Arjun, in your journey of living your life, you have to learn to trust me now. I know it takes time to build trust, but in our case, just force yourself to start with 100% trust and then see how I live up to that.” Those are Nancy’s words as quoted in Arjun’s book. She asked Arjun to let her into his life so that she could help him.

Once Arjun wondered how she managed to connect so deeply with every patient. Nancy replied: “You didn’t come in as a patient. You came in as a human being. Don’t you deserve love, kindness and attention? That’s what I do. I fall in love with every patient every time. Unless you love the person, you cannot care. I have heard others say that one has to love what they do. That does not work for me. How can I love my work? I love people and every patient that walks into my life. I fall in love with them. They deserve the love.”

There was a time when Arjun, the consummate marketing man, was considering suicide. Nancy happened to call when he was driving and sensed what he was planning. She said, “Arjun, hear me out clearly. You are a survivor, not a quitter. Your mind will not let you quit. Whatever you are planning, you could fail in it. Do you know what will happen next? You, the branding man, will get defined as the person who failed both in life and death. Is that how you want to be known?” That prompted Arjun to take a U-turn in life and convert the bothersome headwinds into positive tailwinds.

Then, one day, Arjun got the news that Nancy was no more. She had taken her own life. Why? Her husband told Arjun: “Nobody knows why it happened. She finished her shift and left quietly. Her phone was turned off. I guess everyone had Nancy. You, all her other patients, doctors, her friends, and us, her family. But Nancy did not feel she had anyone. She must have been hurting badly, suffering all alone.”

This is how Arjun sums up his connection with Nancy in his book: “She walked into my life, ready to rescue me. But she never made me feel rescued. She made me feel like I was still me, but a better version. Unfortunately, our connection was only about me. She knew everything about me and how to help me get back in life, not just live but run in life. I wish at least one more time I was standing in front of her, with open arms and calling her name, ‘Naannnncyyyyyyyy!!!!’ and inviting her into a big hug.”

Even if you have seen the movie, do read Arjun Sen’s book, Unquit Forever: Keep yourself in the game. It will take you deeper into his life, and the lives of those who made his life a marathon he successfully started and finished—including Nancy. 

Are you fortunate enough to know a Nancy who loves the people under her care beyond the clock and duty? And if you do, do you really, really know her to encourage her to live on, love on?

When the doctor was first describing her cancer, Katie Doble, 32, stopped listening for some time. Because she had a decision to make. Should she be planning her wedding or her funeral? Her boyfriend had proposed to her just ten days earlier.

Katie went on to get married. She also prepared for her funeral but, thankfully, that must wait.
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Her first symptom had appeared in May 2013—"a strange vertical black bar swimming through her field of vision”. It was diagnosed as uveal melanoma, a cancer of the eye. The first line of treatment involved a “radiation-emitting metal disk placed in the back of her left eye”. As feared, that led to her losing vision in her left eye.

On the positive side, her doctor said the chance of her cancer spreading was less than 2 percent. In April 2014, an ultrasound found no signs of metastasis.

Seven months later, just after Katie’s engagement, new scans revealed that her liver now had a dozen lesions. Like most afflicted with the deadly C, Katie was anxious to immediately start the treatment the physician had suggested, the one that would have given her some 16 months to live.
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Fortunately, she had a rare advantage. Her father was a doctor, who was already exploring more promising options in the stage of clinical trials. On his advice, she refused the treatment and entered a trial at Memorial Sloan Kettering Cancer Center, New York. 

Five months into the trial, her tumors had grown. She was moved to a second arm of the trial that added a second medication to the regimen. The side effects of the combination “kicked my ass”. But she braved it. Determined to overthrow cancer as the ruler of her life, she went skydiving. As she floated down, she tasted the salt from her “happy tears”.

She had to exit the trial because the tumors continued to grow even after two months on the combination therapy.

Then she joined a second clinical trial at UCHealth, Colorado in September 2015. That too she had to leave after one treatment on account of gastrointestinal complications.
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Given that it is not easy to access a clinical trial, and the heavy costs involved (estimated at $600 a month in 2015), most cancer patients hardly get to join one. Katie was already a unique case having participated in two. 

In November 2015, she opted for an FDA-approved treatment of radio embolization. Thirty million tiny radioactive beads called microspheres were injected into the blood vessels supplying the tumors in the right lobe of her liver. It worked! The tumors stopped growing and some even shrunk.

Heartened by this, Katie took a break to focus on building a house, “as one does when you’re trying not to die.”

​She had outlived her doctor’s first dire prediction, but the tumors were thriving in the untreated left lobe of her liver. So, she joined a third clinical trial, again at UCHealth. That trial too went on to fail.

In September 2016, they repeated the microsphere treatment, this time for the left lobe. The cancer gradually stopped growing.

One morning in May 2018, she stumbled out of bed struggling for her balance. A brain MRI revealed that the cancer had now spread to her brain. Gamma Knife radiosurgery eliminated the tumor. However, her liver tumors were growing again.
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Going by a study published in 2019, “the four-year survival rate for Stage 4 uveal melanoma patients is only about 2 percent.” By now, Katie had taken part in three clinical trials and also received three additional treatments. Yet three or four tumors persisted. 

In July 2020, Katie started her fourth clinical trial at the University of Pittsburgh Medical Center. Dr Udai Kammula, the doctor leading the trial, had been after uveal melanoma for almost a decade, because it is “so devilishly difficult to fight”.

Dr Kammula injected her with 111 billion new T cells, after first wiping our Katie’s own immune system. A month after the procedure all tumors were gone or shrinking. The one which did not was surgically removed.

​Finally, Katie was cancer free. 

​Today, she works as a recruiter and gives talks to pharmaceutical and biotechnology companies and nonprofit cancer organizations. She lifts weights and rides her exercise bike when she and Nick are not enjoying golfing, biking and hiking.

“Had I made the choice to not get a second opinion, I would be dead,” Katie said. 

How would Katie have fared, if she were in India? Is it possible for a patient in India, handed a grim prognosis, to take a chance with an experimental remedy that is under clinical trial?

Dr Santam Chakraborty, Senior Consultant at Tata Medical Center, Kolkata, co-author of a paper on “Geographic disparities in access to cancer clinical trials in India” is not very optimistic.
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The best person to inform a cancer patient about a clinical trial possibility is their oncologist. However, as India does not have a very integrated healthcare system, the oncologist is most likely to offer trials running in the hospital they are attached to. According to Dr Chakraborty, given the limitations of the clinical trial registry in India, “finding a clinical trial which is appropriate for the patient is a difficult endeavor for the oncologist.”  

In the US and Europe, an efficient, integrated healthcare system makes healthcare records available to all centers. In India, if a patient undergoing treatment in Hospital A wants to undergo a trial on in Hospital B, they will have to undergo a full workup and could be turned away at the end of it for failing to fulfil the eligibility criteria. The patient could have avoided the hassles and the cost of transfer if the data were easily accessible to Hospital B from the records of Hospital A.

There is also the larger problem that in India, as yet, “the clinical trial scenario is not geared towards providing really cutting-edge solutions.” In advanced countries, a new therapy is researched for decades in a laboratory before it becomes eligible for evaluation in a patient.

In India, clinical trials are usually run with products already evaluated in another country. A pharmaceutical company may evince interest if and only if it is sure that there will be a market for the drug in India.
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Clinical trials in India mostly focus on finding new uses of existing treatments or evaluating efficacy of treatments that have been evaluated in the west or finding ways to make the treatment more affordable. This is in stark contrast to the scene, say in the USA, where a novel innovation could be on trial.

“Even if I were aware that a trial very relevant to my patient is being run in an institution like Memorial Sloan Kettering Cancer Center,” Dr Chakraborty said, “I can offer that to my patient here only if the same trial is being conducted at a center in India.” Most early Phase I trials done in India are for “me-too molecules”, meaning medication already established outside.
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It is mandatory for every clinical trial to be registered with Clinical Trials Registry of India (CTRI). “As a patient, I can participate in a trial if I fulfil all the eligibility criteria, provide my consent and my physician is an investigator in the trial,” Dr Chakraborty pointed out. 

Whether in India, the US or elsewhere, there is no telling if every person who enters a trial will be blessed with a positive outcome like Katie was after all her trials. While everyone’s outcome may be unique, Katie has been sharing her experience with all.

“I gave my first talk in 2017, giving an acceptance speech for The Courage Award from the Melanoma Research Foundation. That’s when I realized how much I loved sharing my story. It gives people hope. It now feels like it’s what I’m called to do. It’s my way of paying it forward and saying thank you to all of the people who have helped me along this journey. I don’t want to hoard the wisdom I’ve gained from this horrible experience and expect other people to just figure it out on their own. It’s really, really hard to navigate this. If I can help just one person and change the course of their treatment for the better, then it’s worth it.”

It is never easy for the patient and the caregivers. Who helped Katie pull through it all?

"I've always identified both Nick and my Dad as my caregivers. Nick is my moral support. And my big spoon! He takes care of me physically and emotionally. And my Dad is the one who has helped us navigate this journey and understand the decisions we’ve had to make. I designated them both as my medical powers of attorney because I didn’t want either of them to face difficult decisions alone."

Do Katie and Nick have a prescription for those who are going through such tough times, so that they can cope better? Yes! Communicate and laugh!

"We still manage to laugh our butts off!" Katie added, "one of my lasting side effects from all of my treatments and the abdominal surgery is that it really hurts when I laugh hysterically. So, when I get that keel-over, gut-wrenching laughter, I can’t breathe. And he [Nick] loves it!"

This is the wheelchair she used. Maybe it can help someone else now.

And this walker he never got to use for long though he, more than all of us, were hopeful that he would eventually get back to walking normally or even running.

We have sanitized this commode chair though we are not sure if it is okay for someone else to use this.
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Days or even weeks after someone dear moves on, these are common donations. Because those might help someone. Because no one wants a reminder of a dear departed lying in a corner.

What is less common is the intention to donate the eyes, the heart, the liver, or any organ that may help someone else live a little longer or help complete a life or two. Donations that can’t be bought from the nearest shop.

According to renowned neurosurgeon, Dr Mazda Turel, “There are innumerable reasons for a family to decide in favour of or against donating organs. In India, very few people make their intentions known when they are alive, and hence, it is up to the next of kin to take a call.” The latter makes it tougher.
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“In some cultures,” Dr Turel writes, “beliefs regarding life, death, and rebirth influence the decision to donate organs. Others believe that the body should not be harmed after death. In many societies, death is surrounded by rituals and taboos. There are superstitions that suggest tampering with the body can invite bad luck or prevent the soul from resting in peace.”

Let us for a minute, shed our emotions and superstitions. Let us examine our body. It is a marvelous machine. However, it does not take long to decay and stink once it runs out of the fuel of life.

The process of decomposition is said to start four minutes after death. Without blood circulation and respiration, there is excess carbon dioxide formation leading to an acidic environment. Enzymes start eating the cells from inside out. Released gases cause bloating and putrefaction (yes, that unmistakable smell of death). Finally, everything soft (organs, muscles, and skin) becomes liquid, leaving only the skeleton.

A natural process, no doubt. That apart, are the final rituals the best way you would like to give respect to your own body or that of a loved one?

Instead, if you will in advance that your organs be donated (or your family did so before it was too late) you could save up to eight lives, help two people see, heal up to 75 burn and wound victims or help someone restore their hand or face.

It is a difficult decision for anyone, except you. Because, you have every legal, moral, and ethical right to decide what will happen to your body after you are no more. You are in no way changing the ordained course of your life by documenting this decision and letting your people know.

And when this is known, it becomes easier to make transplants within a viable time frame: heart and lungs within four to six hours, liver within eight to twelve hours, kidneys within a day or two, and so on.
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Your life will end. No one can change that. But what you can change is how, after that end, your organs could help others begin a new life. Thanks to you.

References:
https://mazdaturel.com/the-surgical-donor/

https://www.donoralliance.org/newsroom/donation-essentials/what-is-the-time-frame-for-transplanting-organs/

https://my.clevelandclinic.org/health/treatments/11750-organ-donation-and-transplantation

https://www.aftermath.com/content/human-decomposition/

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?

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. 

We celebrate sunrise, enjoy sunset. We tend to celebrate birth … but death? Inevitable as it is, we would rather not talk about it. It’s morbid, other-worldly, mysterious. Can it be illuminating?

This is how Dr Christopher Kerr concluded his TEDx talk on December 2, 2015: “What if, at the end of your life, at some appointed hour, the lost return, distant feelings become familiar, and meaning is restored? If any of that is true, then dying is illuminating.”
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Going by what he had experienced, he said the dying often described their end of life “in ways that are actually life-affirming, and rich with meaning, love, and even grace.” And he asserted that he was not into the paranormal stuff and had “a deep aversion to the non-physical, spiritual aspects of dying.”

Dr Kerr is the Chief Executive Officer & Chief Medical Officer of Hospice & Palliative Care Buffalo.
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So, is it possible that those working in palliative care would have experienced deathbed visions?

The Founder and Medical Director of Kosish the Hospice, Dr Abhijit Dam has conducted a unique study on “Significance of End‑of‑life Dreams and Visions Experienced by the Terminally Ill in Rural and Urban India”.

The study stated that end-of-life dreams and visions (ELDVs) were not uncommon and could occur months, weeks, days, or hours before death. The research team spoke to 60 terminally ill patients under palliative care. Most were able to recall the ELDVs vividly. Nearly 80% of the patients reported “seeing” deceased people including relatives, friends, and acquaintances.

Significantly, nearly 95% patients “felt much better having discussed their ELDVs with the team”.

According to Dr Dam, the “subjects found them to be distressing initially, but felt better after discussing it with our team. There was a direct correlation between severity of symptoms and occurrence and frequency of ELDVs. Another finding exclusive to our study was that the persons visualized in ELDVs did not threaten or scare the patient and the known persons visualized were seen as they were in their prime of health.”
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He feels that ELDVs have an important role in holistic care. “I feel that they strongly suggest the presence of life after death and when properly explained, can reinforce a sense of hope.”

Psycho-oncologists Michelle Normen and Keshav Sharma of Karunashraya and their team shared a few experiences.

“The 15-year-old boy had never seen his grandfather because the latter had expired even before his parents had got married. Yet here he was, telling his family that grandfather was standing near the door and calling him. And the young man would keep a countdown going: ‘I have three days … two days … one day ….’ He did depart on the day he had predicted, but not before specifying that he wanted to be buried, not cremated.”

“This man would keep asking everyone to make space. The elephants are coming, he would say. We finally figured out that before moving to Bengaluru, he had spent his entire childhood in Odisha in a village that had plenty of elephants as neighbours.”
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Some envisioned peace in the world they were leaving behind before they moved on. “There was this 14-year-old boy who did not have too many days left. His father and mother were constantly arguing. It was the father’s decision to have just one child. And the mother would never stop blaming him for that decision as they faced the inevitable loss of their only child. The situation was so bad that the parents could barely be together before the child as he lay helpless. Then the boy requested a counsellor to talk to his parents, to make them happy. Finally, reconciliation happened. The three of them spoke without getting into any argument; they even had a meal together. The patient told a team member that he was now happy and ready to go. And he did leave soon after, in peace.”

Dr Rahul Malushte is a Homoeopath and has been practicing for 25 years. He integrates homoeopathy with spirituality and offers healing therapies including past life regression therapy. He communicates with “the souls of humans and animals”.

He believes that those who are about to move on are guided by “higher beings” to attain closure and peace. “It is important to listen to them when they want to talk about what they see,” says Dr Malushte. “It would be terrible to sedate them into silence because others can’t accept or are distressed by what they say. Do not contradict, do not give any false assurance. Doing either would interfere with their closure.”

We carry beliefs, desires, and regrets right through our life and even “across lives”. The final moments, Dr Malushte says, provide an opportunity to let go of these.

However, letting go is never easy. He once had a patient, 70 years of age, walk into his clinic. She was asked to submit details of her family and health issues as is the practice. Dr Malushte’s team was surprised to find that her list of family members included a child she had lost at birth many decades ago. She explained: “I was never able to talk about it. It is a very distressing topic for me. Every year, near the birthday of that child who was born but never lived, I would go into grief for months. Now, I am able to get out of it in 15 days.”

According to Dr Malushte, such deep attachment surfaces at the time of death. “That’s when you connect with the soul again.”

He believes that when you die is a choice that the soul makes, regardless of what the vital signs might say. “There was this old couple and the husband, 90 plus, was very seriously ill. He was in a coma for days, beyond medical logic. We found that was he was worried about his single daughter, their only child. As the wife also very old, he was worried who would take care of the daughter. The daughter finally managed to convey to him that she was fine and would take care of herself and her mother. After this communication, he passed away peacefully within 12 hours.”
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Are deathbed visions or dreams mere hallucination? Of course, it would be difficult to provide hardcore scientific evidence. As long as it brings peace to both the living and the dying, is it best to let science be and simply accept that there is more to us than we know?