Tag Archives: #medicine

Usha Dhupa's Father - Dr. A.N. Bowry

In a World of Giants: Remembering My Father

Father, in this contemporary sketch of a place in the world where giants roamed, warrior-like you entered tall, confident, and armed with science and humanity.

A profile of courage and integrity.

Into this wild, untamed Kenya, on the east coast of Africa, you marched in, in step with the raw power and magnificent bearings of the lions, the towering herds of elephants, the elusive cheetahs, and a superabundance of the wild creatures of this natural world.

Born and raised in Hiran, Punjab, trained as a medical doctor, you, Dr. Amar Nath Bowry, embraced the Hindu philosophy of ‘Karma Yoga’. At 23, you and Lila Wati, your young bride of 17, left your beloved families behind to sail across the Indian Ocean.

Soon you discovered that because of the inhospitable living situation for the native populations in Kenya, death and disease were common occurrences. Along with poverty and lack of resources, the scattered rural populace was preyed upon by a plethora of diseases like Malaria, Sleeping Sickness, Bilharzia.  

Ready to face the challenges head-on, with a fervent zeal, you embarked on a mission to help and heal this land. Undeterred by hardships, to fulfill this noble mission, you dedicated 35 years of your life to Kenya. While accomplishing your goal brought you unlimited satisfaction, it all came at the cost of pain and separation for your young family.   

Respect All. Love All – was the Mantra that propelled your compassionate heart.

India was always Home. After 35 years, you returned, finally, to be part of that revered Indian soil.

A REMEMBRANCE  

Sixty years!  Time must be playing some tricks!

Father, I cannot believe, you have gone sixty,

Long-stretched years.

I still know you as being around me

You are still with me!

 

Your joy in being alive; your healing, nurturing soul

That won over a vast array of patients and admirers.

Your serene, calm composure, your engaging smile

You truly knew how to listen.

 

We just spoke.

We told you of our unfathomed lives

Innocent pranks

Our brow-creased misgivings.

 

In your bright, knowing eyes

Read safety in a protective gaze,

A guidance, a gentle nod of approval.

There, and then, I vowed never to disappoint you.

 

You perhaps knew you were dying!

We were with you for the last four months

Watching and rejoicing in your company;

Your fun and games with Nishi and Achal

Your youngest grand-children.

 

 We did not know you were in pain

You looked frail, yet so dignified

With a mischievous twinkle in sunken eyes.

Your pale lips said a lot; only if I knew how to read them!

But you did not let a shadow cast.

 

The luminosity of your eyes, deep blue!

The doctor asked if they were always

That intense, ocean blue!

Was it ‘The Brightest Flame before It Extinguishes’?

 

My heart knows: The sparkle of my life

Still is enkindled by your gentle, joyful nurture.

Your Love has encompassed

My whole being!

 

In my new beginnings with Dhruv

You launched my life on a personal journey

Of Wellness, of Abundance

I thrive in your blessings.

 

You will be twenty and a hundred, in two months.

The world is richer, the earth full of loving warmth

For you journeyed through it once

Sowed and nourished seeds of life

With an eternal spring of joy!’

— Usha Dhupa


Usha Dhupa (Nee Bowry) was born in Kenya to Indian parents and has lived across Four Continents. She studied English Literature at Delhi University and a published author of ‘Child of Two Worlds’. She loves to write poetry and stories in English and Hindi. 


 

Why Should You and I Care About Palliative Care?

Sukham Blog – A monthly column focused on South Asian health and wellbeing.

My wife’s oncologist recommended a palliative-care consultation during one of her checkups. This was the first time we heard about it and my wife, subsequently, received beneficial palliative care alongside her ongoing treatment for cancer. Since then, I’ve continued to learn more about palliative care and how it helps patients living with various kinds of serious illnesses. I’ve also realized that most people know very little, or are misinformed about palliative care. We need to understand this relatively new medical specialty; it can do a lot for us and our loved ones in the event of a serious health issue. 

Palliative care is specialized care for people living with a serious illness. It is a type of care focused on providing relief from the symptoms and stress of different kinds of serious and chronic, progressive illnesses, and is provided in addition to, and concurrent with, ongoing medical care. It supports the patient’s ability to feel better while undergoing treatments which could be intense and sometimes not well tolerated. The goal of palliative care is to improve quality of life for both the patient and the family.

To palliate is to make something – for example, a disease or its symptoms – less severe or unpleasant. Palliative Medicine is relatively new. It has its roots in the work of Cecily Saunders and Elisabeth Kübler-Ross in the 1960s. The term Palliative Care was coined in 1974 by Dr. Balfour Mount, a surgical oncologist at The Royal Victoria Hospital in Montreal, Canada. It was recognized as a field of specialty medicine in Great Britain in 1987, the same year that Cleveland Clinic started the first Palliative Medicine service in the United States. It became a board-certified subspecialty of medicine in the United States in 2006, just 15 years ago.

Let me repeat: Palliative care is specialized care for someone living with a serious or chronic progressive illness, focused on providing relief from the symptoms and stress of the illness, to improve quality of life for both the patient and the family. It is based on the needs of each individual patient and can be provided at any time during his or her illness, along with the treatment he or she is already receiving, regardless of the prognosis, expected trajectory of the disease, or age of the patient.

What, specifically, does palliative care do? It provides relief from pain, nausea, constipation, neuropathy, shortness of breath, or other side effects and symptoms caused by the illness and/or treatment. It helps when patients and their families have trouble coping with the illness and are anxious, depressed, stressed, or fatigued, and enables them to better carry out their daily tasks and do the things they want. Palliative care can also improve the quality of life for both the patient and his or her family. 

What is meant by quality of life? That depends on the patient! He or she defines what is important at that moment and in the future. The palliative care team works with the patient and his or her family to understand what’s important and what matters most to them, and takes that into account to formulate a treatment plan and provide the best possible support to help realize those goals.

I used the phrase palliative-care team.  Care is provided by a specially-trained, multidisciplinary team that typically includes doctors, nurses, medical assistants, social workers, chaplains, and other specialists. This is because palliative care extends beyond a patient’s physiological and medical needs and addresses other factors that may be affecting their quality of life, including psychological, spiritual, and social needs. These needs vary from patient to patient. In addition, they can vary over time for a given patient.

Needs could include: help with figuring out what medications should be taken and when; thinking things through, and weighing options when faced with decisions on a suggested next step in treatment; help navigating the complexity of a large hospital when referred to different specialists or when various tests are ordered. Sometimes stress can overwhelm the patient, caregiver, or another family member, and they could benefit from having a caring listener, or just a hand to hold for a while. The costs of treatment are a huge concern for many of us, so the assistance of a qualified individual to sort through financial questions might be valuable. When serious illness brings up existential and spiritual questions, trained chaplains could provide answers, solace, comfort, and a compassionate presence. Nutritionists who understand the patient’s diagnosis and condition can help address dietary concerns.   

Palliative-care specialists treat people living with many types of serious and chronic illnesses, regardless of their age, stage of the disease, and whether or not they are still receiving curative treatment; these include cancer, congestive heart failure, chronic obstructive pulmonary disease (COPD), kidney failure, Alzheimer’s, Parkinson’s, Amyotrophic Lateral Sclerosis (ALS), and other life-limiting diseases. Pediatric palliative care is an upcoming specialty. During the current pandemic, it’s an essential part of treatment for those who have contracted COVID-19.

Many confuse palliative care with hospice and believe a recommendation for palliative care implies the patient has a condition that will imminently end his or her life. This is not correct. Palliative care can be very useful for those managing a long-term illness. Quality research provides evidence that the early introduction of palliative care provides all the benefits described above, and results in fewer hospitalizations, a reduced burden on the family, and greater satisfaction overall. Hospice is a form of palliative care for those patients judged to be approaching end of life – and typically have six months or less left to live – who decide to focus on comfort instead of prolonging treatments.

Most private insurance plans, as well as Medicare and Medicaid, cover palliative-care services in hospitals and nursing homes. However, you should always consult with your insurance provider to understand your coverage in detail.

I hope this has helped you better understand Palliative Care and dispel any related misconceptions. 


Mukund Acharya is a regular columnist for India Currents. He is also President and a co-founder of Sukham, an all-volunteer non-profit organization in the Bay Area that advocates for healthy aging within the South Asian community. Sukham provides curated information and resources on health and well-being, aging, and life’s transitions, including serious illness, palliative and hospice care, death, and bereavement. Contact the author at sukhaminfo@gmail.com

Sincere thanks to Drs. Neelu Mehra at Kaiser Permanente, and Kavitha Ramchandran & Grant Smith at Stanford Health Care – Palliative Care Physicians who have contributed greatly to my understanding of Palliative Care.

With sincere thanks to Trung Nguyen at Pexels for the use of her beautiful photograph.

Treatment From Mumbai to Houston: Help A Family

This is about my husband, Sanjiv Agarwal.

Sanjiv is the quintessential 40-year-old – an engineer, working as a marketing professional with an FMCG company. Full of dreams and full of life, always smiling, super intelligent, the center of attraction of any gathering, the best son to his parents, the most caring brother to her sisters, and a doting father to my 11-year-old boy. He is a young heart wanting to achieve something big and also enjoy it to the fullest. His friends would describe him as an absolute gem.

We met at our MBA school and became best friends instantaneously. While I tried to keep finding the best girlfriend for him, we both fell in love ourselves. We got married a few years later in 2007 and now we have a son who is 11-year-old and three of us were leading a small happy life.

Last year our lives turned upside down. Sanjiv was diagnosed with high-risk blood cancer – Acute Lymphoblastic Leukemia B – in May 2020. We were absolutely shocked, as there is no family history of cancer. We were informed that the cure was few rounds of Chemotherapy ultimately followed by Bone Marrow Transplant. We had one day’s notice to decide and commence the Chemo as his case was very acute.

Post his first chemo, Sanjiv developed an extremely rare and troublesome fungal infection while he was immunocompromised. This got us into a vicious cycle as the fungal infection prohibited further chemo treatment without which cancer would not go away into remission. By early November, cancer showed up on his skin as leukemia deposits. His condition worsened with leukemia in the blood, leukemia in the skin, and fungal infection in the body. That’s when doctors in India raised their hands and told us that MD Anderson Hospital in Houston, USA was our best hope. By mid-November, I moved to Houston, temporarily, along with Sanjiv and my son.

Treatment is definitely possible, but prohibitively expensive. 

Doctors here are trying to balance out the chemo and infection treatment to get him ready for a Bone Marrow transplant. We are done with 2 rounds of Chemotherapy and there have been lots of complications post Chemo, and now we await BMT as a final step. BMT is a very intensive process where the body’s immune system is being rebooted and can be complicated as well. The positives news is that the leukemia in the bone marrow is under control, skin leukemia is being treated with Radiation and the bone marrow transplant is now being discussed with the best doctors here.

The last 8 months have been extremely draining for us as a family- physically, emotionally, and financially. All our life’s savings have been used up in the treatment in Mumbai and America.

I have created a Gofundme page: https://gofund.me/0b63f076

I am highly hopeful that I can find some help here in this foreign country from fellow Indians. I want to complete Sanjiv’s treatment here and take him home healthy and hearty.


Prerna Garg has written this piece to receive help for her husband.

Suvita’s Solution to Mass Vaccinations Involves Gossip

(Featured Image: Pippa Ranger, Innovation Advisor, DFID)

In the wake of the COVID 19 pandemic, vaccination is a hot topic globally. In America, 400,000 people have died. We still don’t have a uniform understanding of the efficacy, distribution, availability, and side effects of the COVID-19 vaccines.

Thankfully our 46th President, Joseph R. Biden has signed several executive orders including a 100-day mask mandate, to use the Defense Production Act to ramp up vaccine production, mount a vaccination campaign and expand testing and treatment. While we struggle to rid some people of their vaccine hesitancy in the US, countries with less robust economies, have problems with logistics. 

Vaccines are available but children are not getting vaccinated against communicable diseases like polio, mumps, measles, and rubella. The majority of the world’s undervaccinated children are in India (about 10 million each year). A child dies in India every 4 minutes from a disease that could have been prevented by a vaccine.

What an appalling loss of human life in the 21st century! The government of India is aware of this problem, and they have vaccines but local health departments in rural and semi-urban India need assistance streamlining access to children. As a medical student at LTMMC, we went on vaccination drives to the Dharavi slums, but door to door vaccination, although effective, is very labor-intensive and may not be feasible because of the lack of manpower and portability of temperature-sensitive vaccines. WHO is encouraging think tanks to come up with innovative solutions. 

Last week, I talked to Varsha Venugopal who is the point person in the United Kingdom for Suvita, a non-profit organization.

Suvita came up with a practical solution brainstorming with a network of young like-minded affiliates. What if they used the most accessible communication device, a cell phone, to solve this problem? Team Suvita recognized that most families in India have at least one cell phone. If they could send an SMS reminder to the parents to take their kids for immunization, they would improve compliance.

Prevent disease! Save lives!

But to make the message more effective, they went one step further. They based their policy and procedures on a Nobel prize-winning work of Abhijit Banerjee, who received 2019 The Sveriges Riksbank Prize in Economic Sciences in Memory of Alfred Nobel “for their experimental approach to alleviating global poverty.”

It employed the idea of using the so-called “village gossip” or euphemistically speaking, an ambassador to influence human behavior. Having them send personalized SMS reminders to caregivers, informing them when their child is due for a vaccination, worked. Not only did this approach reduce the workload of individual health care workers, but emerging evidence also suggests that a combination of both these methods is more effective and more cost-effective than either in isolation.

Mother and child in Saran district, Bihar

So far 200,000 parents have enrolled in Suvita”s SMS program. Their staff has achieved the following milestones: a signed Memorandum of Understanding with the Maharashtra Family Welfare Bureau and partnerships with Maharashtra and Bihar state governments. There are 100,000 eligible children in the Saran district of Bihar. They plan to reach at least 50,000 eligible children in 2021. Scaling up SMS reminders program starting with 2 districts in Maharashtra and the whole of Saran district over the course of 2021.

Like all wonderful projects, Suvita’s efforts have faced a few challenges. The COVID-19 pandemic lockdown has affected access to ambassadors and parents. As the program expands, there will be a need for additional funds for staff workers and carefully selected volunteer immunization ambassadors. Measures are in place to protect the personal information of users, thereby limiting the risk of a data breach and exposure of personal information to data-hungry merchants.

If Suvita takes appropriate security precautions and the model thrives, this nudge technique can be expanded to many health, wellness, education, and safety programs. It’s wonderful to harness the self-proclaimed busybodies/gossips for social and economic betterment.

I would like to share an interesting personal anecdote to illustrate Suvita’s role model with you. While writing this article, I was explaining the concept of vaccination to a ten-year-old. After three rounds of easy-to-understand information about the basic concept of vaccination, he had a question. He said: “ Grandma, are you stating a fact, or are you telling me a story?” I was amazed at his query. He questioned my source because I was not in his “peer” group but if the same information would have come from his friend or known social media platform, he would have accepted it! 


Monita Soni is a pathologist. She has one foot in Huntsville, Alabama, the other in her birth home India and a heart steeped in humanity. Monita has published many poems, essays, and two books, My Light Reflections and Flow Through My Heart. You can hear her commentaries on Sundial Writers Corner WLRH 89.3FM.

The New Normal For Seniors In A Post-Vaccine World

Imagine this scenario, perhaps a year or two in the future: An effective COVID-19 vaccine is routinely available and the world is moving forward. Life, however, will likely never be the same — particularly for people over 60.

That is the conclusion of geriatric medical doctors, aging experts, futurists and industry specialists. Experts say that in the aftermath of the pandemic, everything will change, from the way older folks receive health care to how they travel and shop. Also overturned: their work life and relationships with one another.

“In the past few months, the entire world has had a near-death experience,” said Ken Dychtwald, CEO of Age Wave, a think tank on aging around the world. “We’ve been forced to stop and think: I could die or someone I love could die. When those events happen, people think about what matters and what they will do differently.”

Older adults are uniquely vulnerable because their immune systems tend to deteriorate with age, making it so much harder for them to battle not just COVID-19 but all infectious diseases. They are also more likely to suffer other health conditions, like heart and respiratory diseases, that make it tougher to fight or recover from illness. So it’s no surprise that even in the future, when a COVID-19 vaccine is widely available — and widely used — most seniors will be taking additional precautions.

“Before COVID-19, baby boomers” — those born after 1945 but before 1965 — “felt reassured that with all the benefits of modern medicine, they could live for years and years,” said Dr. Mehrdad Ayati, who teaches geriatric medicine at Stanford University School of Medicine and advises the U.S. Senate Special Committee on Aging. “What we never calculated was that a pandemic could totally change the dialogue.”

It has. Here’s a preview of post-vaccine life for older Americans:

Medical Care

  • Time to learn telemed. Only 62% of people over 75 use the internet — and fewer than 28% are comfortable with social media, according to data from the Pew Research Center. “That’s lethal in the modern age of health care,” Dychtwald said, so there will be a drumbeat to make them fluent users of online health care.
  • 1 in 3 visits will be telemed. Dr. Ronan Factora, a geriatrician at Cleveland Clinic, said he saw no patients age 60 and up via telemedicine before the pandemic. He predicted that by the time a COVID-19 vaccine is available, at least a third of those visits will be virtual. “It will become a significant part of my practice,” he said. Older patients likely will see their doctors more often than once a year for a checkup and benefit from improved overall health care, he said.
  • Many doctors instead of just one. More regular remote care will be bolstered by a team of doctors, said Greg Poland, professor of medicine and infectious diseases at the Mayo Clinic. The team model “allows me to see more patients more efficiently,” he said. “If everyone has to come to the office and wait for the nurse to bring them in from the waiting room, well, that’s an inherent drag on my productivity.”
  • Drugstores will do more vaccinations. To avoid the germs in doctors’ offices, older patients will prefer to go to drugstores for regular vaccinations such as flu shots, Factora said.
  • Your plumbing will be your doctor. In the not-too-distant future — perhaps just a few years from now — older Americans will have special devices at home to regularly analyze urine and fecal samples, Dychtwald said, letting them avoid the doctor’s office.

Travel

  • Punch up the Google Maps. Many trips of 800 miles or less will likely become road trips instead of flights, said Ed Perkins, a syndicated travel columnist for the Chicago Tribune. Perkins, who is 90, said that’s certainly what he plans to do — even after there’s a vaccine.
  • Regional and local travel will replace foreign travel. Dychtwald, who is 70, said he will be much less inclined to travel abroad. For example, he said, onetime plans with his wife to visit India are now unlikely, even if a good vaccine is available, because they want to avoid large concentrations of people. That said, each year only 25% of people 65 and up travel outside the U.S. annually, vs. 45% of the general population, according to a survey by Visa. The most popular trip for seniors: visiting grandchildren.
  • Demand for business class will grow. When older travelers (who are financially able) choose to fly, they will more frequently book roomy business-class seats because they won’t want to sit too close to other passengers, Factora said.
  • Buying three seats for two. Older couples who fly together — and have the money — will pay for all three seats so no one is between them, Perkins said.
  • Hotels will market medical care. Medical capability will be built into more travel options, Dychtwald said. For example, some hotels will advertise a doctor on-site — or one close by. “The era is over of being removed from health care and feeling comfortable,” he said.
  • Disinfecting will be a sales pitch. Expect a rich combination of health and safety “theater” — particularly on cruises that host many older travelers, Perkins said: “Employees will be wandering around with disinfecting fogs and wiping everything 10 times.”
  • Cruises will require proof of vaccination. Passengers — as well as cruise employees — will likely have to prove they’ve been vaccinated before traveling, Factora said.

Eating/Shopping

  • Local eateries will gain trust. Neighborhood and small-market restaurants will draw loyal customers — mainly because they know and trust the owners, said Christopher Muller, a hospitality professor at Boston University.
  • Safety will be a bragging point. To appeal to older diners in particular, restaurants will prominently display safety-inspection signage and visibly signal their cleanliness standards, Muller said. They will even hire employees exclusively to wipe down tables, chairs and all high-touch points — and these employees will be easy to identify and very visible

Home Life

  • The homecoming. Because of so many COVID-19 deaths in nursing homes, more seniors will leave assisted living facilities and nursing homes to move in with their families, Factora said. “Families will generally move closer together,” he said.
  • The fortress. Home delivery of almost everything will become the norm for older Americans, and in-person shopping will become much less common, Factora said.
  • Older workers will stay home. The 60-and-up workforce increasingly will be reluctant to work anywhere but from home and will be very slow to re-embrace grocery shopping. “Instacart delivery will become the new normal for them,” Dychtwald said.

Gatherings

  • Forced social distancing. Whenever or wherever large families gather, people exhibiting COVID-like symptoms may not be welcomed under any circumstances, Ayati said.
  • Older folks will disengage, at a cost. Depression will skyrocket among older people who isolate from family get-togethers and large gatherings, Ayati said. “As the older population pulls back from engaging in society, this is a very bad thing.”
  • Public restrooms will be revamped. For germ avoidance, they’ll increasingly get no-touch toilets, urinals, sinks and entrances/exits. “One of the most disastrous places you can go into is a public restroom,” Poland said. “That’s about the riskiest place.”
  • This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.

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IP Law and Trade Policies Compete With Medical Needs

The role of Intellectual Property Law and Trade Policies in Innovation and the access to medicines and medical technologies compete against each other in the Corona impacted world.

COVID-19 has shaken the world and medical technological breakthroughs with new vaccines or drugs would be the only way to save mankind. A global health crisis always triggers concerns over patented medicines and treatments that may impede access to affordable healthcare. A global pandemic or a health crisis stimulates the need for better access to medicines, creating a gray area between the protection of ideas, investments, and access to medicines for the larger good of public health. 

The Emerging Issue     

Intellectual Property Rights awards exclusivity to the inventor or the owner to manufacture and sell their invention.  

Almost a decade ago when HIV/AIDS had become a global crisis, concerns of better access to medicines were raised. Developing nations had concerns with regard to the implementation of strong Intellectual Property regimes as it would have a negative effect on the efforts to improve public health, thereby making it difficult for governments to have policies for affordable healthcare.

The major problem in developing nations is that the prime population pays for their own drugs and state provisions are selective and constrained. Though the concept of state health insurance schemes is blooming, its effectiveness, to date, is questionable. 

A similar situation exists in the current scenario for COVID-19 where not only are the beds in each hospital limited, but extravagant costs have to be borne by patients.

In Tamil Nadu, India, private hospitals are charging a whopping amount of Rs 30,000 per day, even though government orders state otherwise, capping the charges at Rs 7500 for mildly asymptomatic patients and in case they have been admitted to Intensive Care Unit then the charges are capped at maximum Rs. 15,000 per day. Claims of unfair charges are popping up every day where hospitals are being accused of merely robbing patients.

Not only that, exploitative pricing has become a common predicament in most Asian Countries where hospitals are overcharging in COVID-19 rapid tests. The rapid test packages offered by hospitals have been differing from 500,000 rupiah to 5.7 million rupiah ($32 to $365). Exorbitant pricing remains an issue in the United States as well, where an individual faced a $1.1 million hospital bill.

Access to proper healthcare has already started becoming a concern with hospitals turning the major crisis into a money minting machine, even when there is no absolute drug or vaccine for the disease. The concern is, if every entity starts to look at this crisis as an opportunity, sustaining public policy will be a distant task for the government.

The Exclusivity of a Patent 

The key objective of the patent system is to reward exclusively to the innovator for an invention that is novel and has some industrially enhanced efficacy to it. The patented innovation could be a product or a process, as engraved in the TRIPs (Trade-Related Aspects of Intellectual Property Right) Agreement, 1995. The patentee creates a solution to a problem and as an incentive, an exclusive right is given to the owner, to produce and sell it, for 20 long years. The pharmaceutical industry is majorly dependent on the patent system to recover its research and development cost and to generate profits for future innovation.

The Competing Interest: Public Health

Compulsory licensing is an act where the government authorizes a third-party to use, make and sell a patent without the permission of the patentee or the owner, when the medicine is not available at a reasonable and affordable price or when it is not obtainable in a justified quantity. Compulsory Licensing and competition from generic or biosimilar products are general issues that threaten many patent holders. A competing interest is involved here, where on one side, there is a greater good of public interest where the ownership of technological innovation should be with the public, and on the other side, there is private ownership of patents fuelling further innovations. 

Biosimilar and generic drugs are sold at a cheaper price and are said to have a trade-distorting effect. However, the provision of consensual licensing instead of any legal compulsion might be a silver lining to this whole circumstance. The possibility stems from the current world scenario where corporate social responsibilities on Multinational Corporations (MNC’s) are an obligation and a single-minded pursuit of business is no more encouraged. This can definitely balance the competing interests of the right holders and the public interest at large. 

With the current COVID-19 scenario, the World Health Organization has accepted a proposal for patent pooling in order to collectively share the patent right, test data, and information required to create drugs and vaccines. It showcases an attempt towards navigating patent rights for all countries thereby making new innovations available to everyone.

Patent Pooling is a framework where one or two patent holders enter into an agreement to share their innovation by means of licensing with each other or with a third party in order to provide fruitful technological solutions. Patent pooling can even help in the scenario where technology is not entirely developed and thereby lead to new innovations without any hindrance to access.

However, with the United States trying to quit the World Health Organization, a question emerges – ‘in case they do terminate their relationship, how is the patent pool going to function?’ We all know what happened to the International Trade Organization when the United States chose not to be a part of it and now with the changes in the current arrangement, the question emerges again. The world is approaching multilateralism and is finally able to compromise with nationalism in order to work in solidarity. 

Lahama Mazumdar is currently working as a Teaching Assistant in National University of Study and Research in Law, Ranchi and is a doctoral student at National Law University Odisha. 

That Good Night: Life And Medicine

Writer Sunita Puri, a doctor and writer, uncovers the role of the doctor when families need medical care and advice the most – at the time when they seek palliative care for loved ones. Issues surrounding healthcare delivery are being discussed every day and Dr. Sunita Puri’s first person account is thought-provoking and raises pertinent questions that all of us need to confront – patient, family members, doctors, healthcare executives and hospital administrators.

How do we want to live and how do we want to be treated when options are exhausted? A taboo subject that forces us to consider personal decisions that affect the public sphere. Here is an interview with Sunita Puri on her book – That Good Night, Life And Medicine in the Eleventh Hour

Q: Palliative medicine is a newer subspecialty of medicine that focuses on treating the suffering of patients and families facing a serious illness. What initially drew you to this field ad when did you know you wanted to be a palliative care doctor?

SP: If you’d told me at the beginning of medical school that I’d end up practicing hospice and palliative medicine, I would have looked at you blankly and asked you what those words mean. And once you explained, I would have told you there was no way I’d put myself through medical school only to care for patients I couldn’t cure. When I was in medical school, my preoccupation with studying and treating the body often blinded me to my patients’ very human needs and concerns, particularly when they suffered from advanced and terminal illnesses. And yet the times I felt the most like the doctor I wanted to be were the times when I sat with a patient I knew I would lose in the coming weeks or months, and focused my attention on addressing their physical and emotional suffering. In palliative medicine, I get to guide patients and families through the hardest yet most universal transition we will all face, and I get to help make that experience as comfortable and dignified as possible. We will lose the people we love. There are no do-overs. And there is no greater privilege in medicine than to make that loss peaceful and humane.

Q: This is the first book written by an American palliative care physician that, in a very personal way, reveals what it actually means to have discussions about a patient’s goals and values at the end of their lives. Can you describe how you, as a medical doctor, learned to have these sensitive conversations that often veer into complex emotions and spiritual beliefs? Why is open and honest communication about dignity and suffering—with patients and with their families—so important?

SP: Clear, compassionate communication is the cornerstone of the relationship between doctors and patients. Although I worked hard in medical school to learn to diagnose and treat an array of ailments, I didn’t learn what might seem basic: how to tell a patient that they have a life-threatening diagnosis, how to talk with them about what quality of life they value if time is short, and how to discuss the best way to care for them when a cure isn’t possible. I was drawn to the architecture and impact of conversations with very sick patients because I witnessed the way that wordsour oldest, non-technological toolscan comfort and heal. In palliative medicine, words are my instrument, and conversations are my procedure. My practice requires fluency in the language of scientific medicine as well as the language of the spirit. As human beings, we all share a common focus on maintaining our dignity even amidst unimaginable suffering. Though it may seem unusual for a physician to use these words, this is the vocabulary that most of my patients have been waiting to hear and to use.

Q: Medical care in our country is suffering from severe depersonalization. You write that doctors are taught to treat patients “like a panoply of diagnoses, biological mysteries to be solved.” What can the profession of medicine learn from the principles of palliative medicine?

SP: Medicine is a deeply humanistic profession, but our health care system doesn’t always allow physicians to spend the time we need to care for patients as fully as we’d like. Palliative medicine focuses on the many ways that patients experience sufferingphysically, emotionally, spiritually, and existentiallyand seeks to improve patients’ quality of life and well-being by getting to know them as human beings. But in order to do this well, I need the luxury of time with my patients, and I’m very lucky to be able to spend an hour or two at a time with them if necessary. What surprises me is that our health care system supports this time investment when a patient has an advanced illness, but not always before then, when it might actually assist in preventing some of the untimely deaths I have witnessed in my career.

I think medicine could be profoundly transformed if the principles of palliative medicinea focus on controlling bothersome symptoms, and on having careful conversations about what matters most to a patientbecame part of everyday medical practice. But this would require a parallel cultural change in our health care system and in its financing. Patients shouldn’t need to have a bad diagnosis in order to benefit from the compassionate, humanistic approach to care that we provide in palliative medicine.

Q: You seem to live between multiple worlds – as the daughter of immigrant parents, as a doctor, and as a writer. How do you navigate each, and what inspired you to turn your experiences into a book?

SP: Though I’m very proud of being a blend both of cultures and professions, being a citizen of several different worlds hasn’t always been easy. Being a more artistically inclined physician always made me feel like a bit of a freak; if I was always thinking about writing essays and stories rather than doing research projects, was I really supposed to be a doctor? Similarly, as a teenager and young adult, I wondered if I was ‘Indian’ enough, and fretted over whether I stayed true enough to the culture and heritage with which I’d been raised. But I’ve come to see that we are each a patchwork of different identities, and how we navigate the tension between them is what makes each of us unique. I began to ask myself why I thought a doctor shouldn’t write, or what it meant to be ‘Indian enough.’ For me, writing and reading have been ways to find company during the often isolating experience of figuring out who I really am and what I’m meant to do, both in the hospital and in my wider life. And the writing of the book was very much about discovering, on the page, the many facets of myself, the way that they shape each other, and how they collectively came to influence who I’ve become.

For this reason, the book is as much about my parents and my heritage as it is about medicine. It’s as much about my love for language and my puzzling, yet very human, inability to apply it in my early medical training. It’s about discovering how mortality did and didn’t scare me, and how being a doctor helped me to learn important spiritual lessons of acceptance and surrender, alongside my patients. Because all of these things live in me, and the writing of the book was a way to place them side by side and find the universal human experiences in my particular journey. Though the writing of the book was often painful and deeply emotional, as Cheryl Strayed has said, not writing the book became harder than writing the book. It is, as Strayed has also said, the story I was meant to tell.

Q: Many patients turn to spirituality for solace when faced with an advanced illness. But many physicians struggle to discuss spirituality with patients, given that this is a highly personal and sensitive matter. Can you talk about how your upbringing taught you to embrace life’s temporality, and how that helps you to navigate conversations about spirituality with patients?

SP: I was only five years old when my fathera deeply philosophical manfirst told me that life is temporary, and beautiful in part because it is temporary. Much of our suffering in life, he said, stems from an inability to accept the fact that life is both finite and constantly changing. He and my mother spoke openly of the suffering they endured as children living in poverty in India, and how they were able to transcend it through prayer and through remembering that everything in life, both our joys and sorrows, is fleeting and impermanent. Though we talked about such profound truths when I was very young, it wasn’t until I was in my residency training and taking care of patients facing the end of their lives that I began to understand just how many spiritual questions the experience of illness can pose. And although my parents shared mostly Hindu and Buddhist teachings, they taught me that every spiritual tradition recognizes and respects life’s temporality, and the suffering we all endure, in different ways.

I am always careful to ask patients how they define their own sense of spirituality, but often find that even patients who consider themselves atheist or not particularly spiritual struggle with the meaning of their existence and their suffering. Being able to help patients talk openly about these very personal matters, simply by normalizing and acknowledging their illness, can spark deeply spiritual and existential questions. These conversations also help me to be a better doctor to them. I have a clearer sense of the interconnectedness between their spiritual pain and physical pain, and can treat both more fully.

Q: 25% of Medicare spending is on costs related to care in the last six months of life. Based on your own experiences, why do you think this is the case? What is the thought process behind pursuing aggressive treatments that may not alleviate suffering? 

SP: I’ve observed that both doctors and patients focus mainly on living as long as possible, and have difficulty accepting medicine’s limits and talking about the inevitable end we will all face. When I was in my residency training, I myself subjected dying patients to treatments and procedures that I knew wouldn’t ultimately help them, because as a physician I felt tremendous pressure to offer anything I could to sustain their lives. I didn’t know that an equally important part of my job would be to recognize death’s approach and to talk with patients about what was most important to them in the short time they may have left.

Just as I, as a physician, felt an obligation to save lives, I’ve heard many patients describe pressure to continue “fighting,” trying any treatment offered to them, lest they be perceived as “giving up.” I see this unfortunate cycle daily at work: physicians believe it is their job to keep patients alive, and struggle to discuss what might matter most to patients in their last days. Patients and families navigating the fear, uncertainty, and grief that accompany serious illness may not know what questions to ask about the trade-offs implicit in choosing aggressive, hospital-based care for ultimately incurable ailments. Breaking this cycle involves earlier discussions about mortality, particularly for patients with a serious illness, so that they can avoid painful, ineffective treatments at the hospital, when many may instead prefer to spend their final days at home with their families, free of pain and anguish. Because the true and most tragic cost of the often excessive care provided at the end of life is the human costthe suffering that patients and families and physicians experience when they seek to postpone rather than confront life’s end.

Q: In THAT GOOD NIGHT, you write a lot about your mother, an anesthesiologist, and her influence on your decision to become a doctor – as well as her reservations about the field you ended up choosing. How did your relationship with your mother shape your doctoring? What does it mean to you to have followed her into medicine but to practice a very different type of medicine?

SP: Some might say that my mother and I practice diametrically opposed fields of medicine: anesthesiology is concerned primarily with keeping patients alive in emergencies and during surgery, whereas palliative care seeks to normalize, embrace, and openly discuss mortality. And yet I modeled my own style of doctoring most heavily on my mother’s. My mother’s doctoring is very different from the styles of other doctors I knowincluding the internists, surgeons, and other palliative care doctors I typically work withbecause she openly believes that a mastery of science and a respect for the sacred are equally essential to doctor well. She prayed with her patients before taking them to surgery, and prayed before she started a case in the operating room, taking comfort in both her mastery of technologic medicine and the oversight of the divine. But though she and my father long emphasized the fleeting nature of life and the inevitability of death, she struggled to understand why I would use my medical education to ease the suffering that accompanies the last stages of life. During my training, we fought often about my choice to practice what she considered a very depressing medical specialty. As she and her friends and family age, she is personally confronting her sometimes conflicting feelings about aging, dying, and medicine’s role in both. Ours is an ongoing conversation – though she often accepts and admires my work, I occasionally have to remind her gently that my field focuses on the simultaneous embrace of life as well as an acceptance of its ultimate end: much like what she and my father taught me.

Q: You describe dying as a messy, imperfect experience and suggest that the dying are not enlightened teachers of life—as they are often portrayed in books and movies—but rather that they are simply trying to continue living the best they can. Can you share more what you have learned from caring every day for patients facing the end of their lives? And from their families?

SP: Being with my patients reminds me how life can change in an instantthe ordinary instant, as Joan Didion writes. At the hospital where I work, the average age of the patients I see is between 45-50. Some of my patients are my age or younger. Others look and act like my parents. One day, they may have a cough and a fever that they assume is the flu; the next day, they are told they have incurable lung cancer. Accompanying them through the many losses of living with an illness reminds me that I shouldn’t take anything for granted, even the things I do mindlessly: chewing my food, or going to the bathroom without assistance, or walking around my home without getting winded. With both my patients and their families, I am the privileged witness of the incredible tenacity of human beings – we think we cannot face and survive the unimaginable, but we can and do. They have taught me that forgiveness is a gift and a balm, that love is elastic and accommodating of even our most despicable thoughts and behaviors, that we truly carry each other through this lifetime.

But this is not to romanticize what it means to be with dying patients: although they are often at different stages of understanding and accepting their illness, most of them are still trying to live and maintain a sense of normalcy, whatever that might mean for them. There’s only been one time when a patient has sat with me and said, “Let me tell you what I, as a dying man, have learned about life.” And his advice was two-fold: “Everyone should experience the love of a dog. And the cliché that we don’t know what we’ve got till it’s gone? It is absolutely, one hundred percent true.”

Q: You discuss how emergency medical care is very well coordinated, but end of life care and palliative care are much trickier areas. May families find themselves lost and confused in a maze of figuring out how to care for a dying loved one. What are some changes to our health care system that may make it easier for patients and families to get the type of care they need and value at life’s end?

SP: Part of why patients and families are so lost and confused when discussions of end of life care arise is that we often have these discussions in moments of crisis. From the moment a person gets a serious diagnosis, we should start discussions about their own personal goals and values, and about what palliative care has to offer. Far from discouraging people or taking away their hope, early discussions about mortality actually normalize the topic and help patients and families to plan for what they want for themselves. This is why major medical organizations including the American Society for Clinical Oncology recommend palliative care consultations early in the course of a serious illness, rather than at the point where a patient is critically ill in the ICU. Not only does this help patients and families to have the time to make better decisions for themselves, but it has even been shown to lengthen the lives of some patients.

I hope that in the future our health care system will integrate palliative care consultations into the routine care of patients with advanced cancer, heart failure, liver failure, and other serious conditions so that we proactively help patients and families to plan for hard scenarios well ahead of time. Since I have taken care of patients not only in the hospital but at home on hospice care, I have seen firsthand that dying well at home takes advanced planning and adequate resources. If a patient tells me that it is really important for her to be in her own bed and in the company of her family at the very end of her life, it is much more likely that we can grant her wish if we plan for it.

I also think that doctors and nurses in training need earlier and more comprehensive exposure to palliative care, so that they understand their role in caring for patients who they may be unable to cure. Mandatory lectures on and exposure to palliative care and hospice must be integrated into all medical and nursing school curricula so that all future care providers understand the important role they must play in caring for the dying. Acknowledgment of medicine’s need to deal better with death isn’t an impediment to innovation.

Q: What you see and do on a daily basis is very emotional and impactful. How do you cope with the difficulty and emotional strain of this work, and with facing dying so regularly?

Many people wonder why anyone would choose to practice palliative medicine, and most assume that it is dreadfully depressing and demoralizing. But it’s actually incredibly uplifting and satisfying, because I can make a huge impact on patients and families during one of the most vulnerable times in their lives. If I can control a patient’s pain well, they might be able to make it to the wedding of their granddaughter or renew vows with their own spouse. If I can help them to clearly identify what is most important to them in the time they have left to live, they may be able to admit that their time is better spent going to the beach instead of the chemotherapy suite. But it isn’t easy work. For many years, though I helped patients stay healthy and feel well, I didn’t understand what it meant to take care of myself. I’ve learned the hard way that if I don’t take care of myself, I cannot do this work. Every day, I remind myself of two things: firstly, the frequency of the physical and emotional suffering I witness is not normal. Secondly, my work and my life, though interrelated, are not the same. Acknowledging the boundary between the two keeps my workaholic tendencies in check, and ensures that I find ways to care for myself, so that I can continue not only to do this work but to enjoy my own life. I find tremendous comfort in nature, and try to go hiking, or visit the seashore, or even sit in a courtyard outside the hospital and look at the trees between visits to patients. I joke around with and vent to friends and coworkers, try new restaurants and bars in my neighborhood, and go to yoga. I also regularly watch the best satire around: reruns of The Colbert Report and Scrubs, episodes of John Oliver’s show, and random YouTube videos of cats befriending dolphins, lions hugging their old trainers, and dogs behaving badly. Thank God for the Internet!