Where there is love, there is no pain! – Dr Bernard Thill

Jon Baines international tour takes a peep behind the curtain of palliative care in N. India.

India is a land like no other in the richness and diversity of its people, its culture and its history. It is home to one of the world’s oldest religions and some of its most beautiful man-made structures, spectacular landscapes and wildlife, and a vibrant and colourful society clinging to ancient traditions whilst embracing the modern world.

On the 26th February 2023 ten palliative care professionals – 4 nurses, 2 social workers, 1 art therapist, 1 pharmacologist and 2 medical doctors, from Australia, UK and Luxembourg, started a JBT North India Palliative care Tour in Delhi, which ended in Kolkata the 12th March 2023.

 

The tour consisted of a varied cultural programme balanced by a wide ranging professional itinerary of visits, talks and meetings with palliative care practitioners in both rural and urban India.

The tour leader was David Oliviere, a well-known consultant in psychosocial palliative care, a social worker, an educationalist and counsellor. He is former Director of Education and Training at St Christopher’s Hospice in London and visiting professor at the School of Education and Health Sciences at Middlesex University.

Introduction

The constitution of India considers the right to life to be fundamental and obliges the government to  ensure the right to health for all.

In 1975, the government of India initiated a National Cancer Control Program, but the concept of palliative care is relatively new to India, having been introduced only in the mid-1980s. Since then, hospice and palliative care services have developed through the efforts of committed individuals, including Indian health professionals as well as volunteers in collaboration with international organisations and individuals from other countries.

By 1984, the National Cancer Control Program was modified to make pain relief one of the basic services to be delivered at the primary health care level. But morphine availability was a considerable problem to the provision of hospice and palliative care.

“India grows opium poppy under license in the three Northern states of Uttar Pradesh, Madhya Pradesh and Rajasthan. Government of India Opium and Alkaloid Factories extract opium from these poppies, then produce and export the raw materials used to manufacture opioid analgesics around the world. A tiny fraction of the raw material is converted to morphine for domestic medical use. In reality, morphine reaches only a tiny portion of the needy. It is indeed paradoxical that two decades after ‘hospice’ was introduced in India, people in pain in a major opium-exporting country have no access to it for medical use”

– Dr M.R. Rajagopal, the founder of Pallium India, said in the Journal of Pain and Symptom Management, Special Article, “India : Opioid Availability-An Update”, Volume 33, Issue 5, P615-622, May 2007.

“Two of the main barriers are the lack of professional education of the medical community and the unrealistic strict governmental barriers to opioid availability because of the fear of abuse and addiction”.

In 2014 the Narcotic Drugs and Psychotropic Substances Act had been amended and it recognised that the need for pain relief was an important obligation for the government.

The revised law created a class of medicines called the essential narcotic drugs list, which includes morphine, fentanyl, methadone, oxycodone, codeine and hydrocodone. All these drugs have been approved for pain relief since 2018, allowing palliative care physicians to prescribe opioids to actually about 1% to 4% of the needy. The most common cancer in India amongst men is oral cancer (16,1% of all cancers), due to chewing tobacco. The most frequent cancer in women in India is breast cancer.

 

The different Centres we visited

In Delhi we first met the staff of CanSupport, founded in 1996, a big home care team association with 32 teams, comprising a doctor, a nurse and a counsellor, operating in 17 home care centers across 5 states of India.

This is India’s largest home-based, free of charge, palliative care program. The commitment of this fascinating creative team was so impressive. We were lucky to meet Founder Harmala Gupta and Dr. Ambika Rajvanshi, CEO  and their team.

Dr Ishita Gandhi, Senior Palliative Care Physician, said :

 Pain is what the patient says. And it is not the space which matters, what matters is to have the heart in the right place.

“After physical pain had been relieved, social, psychosocial and spiritual pain come to the forefront”. One of the medical colleagues said.

CanSupport teams offer information about the disease, assist in making informed decisions about goals of care, assure pain and symptom management to improve quality of life, take care of wounds and tubes and help patients and families with psychological, emotional and spiritual support. CanSupport is available 24 hours 7 days by phone and depends entirely on donations to run its free services.

After this excellent meeting, we had lunch prepared by the Butterflies School of Culinary and Catering (BSCC ), established in 2009. This is the first culinary school for street connected children in India. Adolescents above the age of 17 years quickly learn important skills like decision making, leadership, teamwork, management, entrepreneurship, communication, etiquette and discipline in the two year vocational training programme.

“At BSCC we help children grow holistically into self confident, sensitive human beings “, Mrs Rita Panicker, Director of BSCC, said.

Rajdev, a BSCC student working at JW Marriot Hotel, noted : “Butterflies helped me find my wings. I want to work harder and fly higher”. BSCC is an amazing innovative project and for us it was a nice and tasty Indian culinary experience!

The next stop was the Shanti Avedna Sadan Hospice in Delhi , established since 1986.

Where there is love there is no pain

is the logo on the entrance door, a quote from St Augustin. Shanti Avedna Sadan is India’s first Hospice, offering palliative care totally free of cost, together with the love and care of a home, to terminally ill cancer patients and to all who need it, irrespective of community, caste or creed, with a preference to the poor and the needy.

There are no i.v. fluids or subcutaneous pumps, but only oral morphine. Shanti means peace, Avedna signifies absence of pain and Sadan is a home. Literally the name of this hospice means  Peace in the absence of Pain. There are two floors with 20 beds each, one for females and one for males, and a nice peaceful garden behind.

The patients are always encouraged to be in the open space wards, as they can be looked after better and never remain lonely. Each bed in the ward can be curtained off for individual privacy and comfort when needed.

Dying and death are not hidden, not separated from the living, they are considered as an essential part of everyone’s life.

Family members are welcome and may stay with their beloved ones.

We then visited in Delhi the most important hospital in India, named AIIMS, All India Institute of Medical Sciences, established in 1956. AIIMS is in two different sites, the original building is in Delhi, and the new one, opened in 2018, is in Haryana’s Jhajjar District, called National Cancer Institute of India and Infectious and Community Diseases with a capacity of 750 beds.

In AIIMS Delhi, at the Institute Rotary Cancer Hospital, a very busy and crowdy institution, we had the great honour to meet Dr Sushma Bhatnagar, Professor and Head of Anesthesiology, Pain and Palliative Care, one of the pioneers of Palliative Medicine in India. Dr Bhatnagar gave us a short overview of the last 30 years of developing and teaching palliative care and palliative medicine. On the way to the palliative care ward, where we were able to greet some advanced cancer patients in single or 2-bedded rooms with intravenous pain therapy, there were these meaningful quotations :

Life ends when you stop dreaming. Hope ends when you stop believing. Love ends when you stop caring. So dream, believe and care ! Life is beautiful.

After the AIIMS in Delhi we had the exceptional opportunity to visit the new huge AIIMS in Jhajjar,  about 50 km from Delhi, a very big research and teaching hospital, with several high modern buildings (Academic Block, Research Block, Diagnostic Block, Guest House,…) in a large green park.

First we got a warm Indian Namaste with a nice cup of masala tea. Then we have had a short presentation of  this top modern institution with all the newest technical facilities. Finally we met the palliative care staff in the large open space Palliative Care Unit,  where i.v. fluids, oral morphine, Fentanyl patches and subcutaneous treatments are applied.

“All we do is to try to improve the quality of life of our patients”, the empathic palliative care doctor said. As oral cancer is so frequent in India, it was not surprising to see in the corridors and the waiting rooms, boards with the inscription :  “No Smoking Area. Smoking here is an Offence. Violators will be punished with fine up to Rs. 500/-.”

After Delhi we went to Jaipur, where we visited the Bhagwan Mahaveer Cancer Hospital. We met Dr Anjum Joad, Director of the Department of Anaesthesia and Palliative Care Medicine, and her committed multidisciplinatry palliative care team including the psychologist, the social worker and the physiotherapist.

“We cannot change the outcome, but we can affect the journey”, Dr Anjum said. And she mentioned Cicely Saunders : “You matter because you are you ! and you matter until the last moment of your life”, as well as a quotation of Dr Nathan Cherny : “There is an underlying optimism at the heart of palliative care”. Finally she quoted Johann Wolfgang Goethe :

If you treat an individual as he is, he will remain how he is. But if you treat him as if he were what he ought to be and could be, he will become what he ought to be and could be.

 The psychologist recommended us the book by Bronnie Ware :  “The top five regrets of the dying”:

1. I would have preferred to live the life I wanted myself and not the life the others wanted from me.

2. Regret to have worked so hard.

3. Regret to not have said one’s emotions.

4. Would have preferred to keep contact to my friends.

5. Would have preferred having allowed myself being happier.

Then we went to an Ayurveda Center in Jaipur. The Ayurveda Doctor gave us a comprehensive talk about this old science and she showed us that Ayurveda can be helpful in the management of cancer in many ways as prophylactic, curative, palliative and supportive treatment. No doubt, it  improves quality of life.

Ayurveda is the science of life which was inspired by the ancient sages of India and refined over 6000 years. It is the knowledge of how to live in health and harmony with our universe, which along with ourselves, is made up of the five elements : Earth, Water, Fire, Air, Ether. “Ayurveda helps us to enhance our physical, psychological and spiritual well-being”, the doctor said.

Then our journey brought us to Varanasi, the oldest living city of the world, the city of salvation, where death and dying are celebrated since 3000 BC. Death and dying are a natural part of life. Dying is the transition between life and after-life. In after-life due to reincarnation the spirit of the dead is always present in the Hindu family.

In Varanasi we visited the Pain and Palliative Care Unit at the Banaras Hindu University with 6 palliative care beds in an open space room. It was really amazing to listen to Dr Nimisha Verma and all these so empathic Indian female doctors and to their commitment to their patients. A Buddhist proverb on the wall kept our attention :« “Don’t let pain trouble you anymore. Pain is inevitable, Suffering is optional”.

It was also in this Palliative Care Unit that we met the physicist, philosopher, writer, singer and musician Dr Krishna Kant Shukla, a nice and humble person. It was a pleasure to listen  to his wonderful talk about vedas, Hinduism and spirituality. But I only dare sum up just a small part of what I hope I had understood rightly.

According to Dr Shukla, “the Vedas – veda means knowledge – are considered to be the oldest religious texts existing in the world and originating in ancient India about 1500 BC. Composed in Vedic Sanskrit, the texts constitute the oldest layer of Sanskrit literature and the oldest scriptures of Hinduism. There are 3 important principles in the vedic world of Hinduism :  reincarnation, the fate kharma and dharma, which is the eternal law of righteousness, of harmony. Any sort of action that supports harmony is dharma. As humans are not separate from the creation, but a part of it, any kind of harm you will do against nature, against the unit, against humans, is against dharma.

According to the Vedas the supreme principle of Creation is consciousness. Consciousness condenses into mind, mind condenses to energy, and energy to matter. When we are born, we have a debt to our parents and our ancestors.

In Indian culture we have to take care of our parents. The father is important, but  if we don’t have a mother, we will not have a protective life. Everybody has 5 mothers : the biological mother, the mother of our teacher Guru, the mother of Brahma, the Hindu God of creation, the man of wisdom and knowledge, the holy mother Cow and the mother Earth.

The Vedas teach us that pain is a friend, a messenger, so don’t shoot the pain, Dr Shukla said, the pain is telling you, nature is a conscious force, the pain tells you not to move, to stay in bed.  Nature takes care of you. There is no greater pharmaceutical factory than the human body, which produces painkillers. A good death is having a conscious mind without any influence of synthetic painkillers.

Death is a friend, a teacher. Death has to be celebrated : I do not need this body, I can go elsewhere.

If you have been nice, correct, you will be reincarnated and you will continue to live in your family  as a spirit. So  who are we to stop nature ?, Dr Shukla questioned. And he quoted Hippocrates : ‘As long as there is life, you have to protect nature’ ! You have to put love in technology and in medicine ! Spiritual poverty is much more dangerous than material poverty !….. “

After this inspiring, promising and encouraging lecture about Hinduism and spirituality, we finally arrived in Kolkata, the city of Mother Teresa, who said : If you can’t feed a hundred people, then feed just one.

We visited the Saroj Gupta Cancer Center and Research Institute, founded by Dr Saroj Gupta, 5.12.1929 – 21.5.2010,  “a leading light, a visionary who dedicated his life to serve the suffering humanity and left an indelible mark on earth for mankind. His indomitable spirit continues to live on.  His vision was to serve the victims of the dreadful disease-especially the underpriviliged with the best possible diagnostic and treatment facilities in a ‘Home Away from Home’ ambiance with human touch”.

He realised his dream, following the Indian philosopher Swami Vivekananda  from Kolkata, 1863-1902, who said :

Take up one idea, make that one idea for your life, think of it, dream of it, live it. Let the brain, muscles, nerves, every part of your body be full of that idea and just leave every other idea alone. This is the way great spiritual giants are produced, others are mere talking machines.  

The hospital raised its first fund from a drama, based on a story written by the founder, Saroj Gupta, himself, where he himself enacted the role of a poor cancer patient who was denied a bed in the city hospital.

At the entrance of the main building near the reception desk there was this signpost : “Life is like a cup of tea. The taste is all up to how you make it”. We then met the whole medical staff, who gave us an overview of their clinical activities as well as of palliative medicine which includes palliative chemotherapy and palliative radiotherapy.

Due to its architecture the Saroj Gupta Hospital is an outstanding Cancer Center with a real human touch opened in 1973 with 311 beds : different one storey buildings in a nice park with ponds, a Children’s Express train for the children treated in the colourful pediatric oncology department with a bone marrow transplant unit, a top radiotherapy unit wih Varian Linear Accelerators, a chemotherapy and  a palliative care unit as well as a surgical department. After a visit of the different departments with the two Gupta sons, one is an architect, one is an oncological surgeon, we got an excellent Bengali lunch together with the whole marvellous staff.

 

Conclusion

Despite the terrible poverty with begging children and adults everywhere, despite the big social gap between the poor and the rich, despite all the bulky waste  in the streets, despite the chaotic loud traffic with all the blowing horns, India is of course inspiring due to four magnificent and specific attributes:

The friendly Namaste with folded hands and smiling faces and the yellow flower wreath round the neck, meaning platonic love, truth, respect and compassion.

The colourful street-scene with the wonderful saris and  the Happy Holi Festival, a popular and significant Hindu festival celebrated every year in the beginning of March as the Festival of Colours, Love and Spring with its slogan: “I bring you colour in your life”.

The living presence of spirituality and philosophy due to Ancient religions like Hinduism, Jainism and Buddhism,  mixed with younger religions like Sikhism, Islam, Christianity and Judaism, addressing the meaning of life, dying and death.

Finally the spectacular architecture especially from the Mughal period with the wonderful Taj Mahal.

India is synonymous with hospitality. In all the hospitals and hospices we visited the most amazing was the warm and friendly welcome ambiance, the spirituality and the commitment of all the professionals to their patients, including the poor and the homeless, as well as to the best possible medical practice in order to protect life and nature.

We are so grateful to the whole medical Indian community  we met for having shared with us their experiences and their beliefs and attitudes on death and dying. From the bottoms of our hearts we thank all our Indian colleagues for having made these memorable and unforgettable meetings happen!

I would like to conclude with 2 quotations :

one written by Bhumi Shaw, a student of Future Hope School Kolkata, in the context of an exhibition titled ‘Young Minds for a Compassionate World’ at Victoria Memorial Kolkata and organized by Natural History Museum London and the British Council :

Our life is a constant journey, from birth to death, the landscape changes, the people change, our needs change, but the train keeps moving, life is the train, not the station

and one from Rabindranath Tagore, one of India’s greatest literary personalities, whose house we visited in Kolkata, the place where he was born  in 1861 and where he died in 1941 :

Death is not extinguishing the light; it is only putting out the lamp because the dawn has come.

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Dr Bernard Thill, MD, medical oncologist, founding president of the Luxembourg Palliative Care Association, OMEGA 90, president of Doctors of the World Luxembourg

Jon Baines Tours are an international travel company specialising in medical professional study tours for over twenty years.

For more details on Palliative Care in Southern India 14-27 February 2024 led by David Oliviere, please contact the friendly team at JBT on info@jonbainestours.co.uk or +44 (0) 207 223 9485.