- From Calgary, Canada to Trivandrum, India through Palliative Care
Return To India
It had been several decades since I had been on a motorcycle. I was being brought back to my guesthouse as a back seat passenger, after a videoconference with Drs. Ann Broderick of the University of Iowa, Nandini Vallath, Sunil Kumar and Rajgopal. I have to say that it was an interesting journey through the winding roads of residential Trivandrum, but not a terrifying experience.
After, 32 years of being a palliative care physician in Saskatoon and Calgary, I have the opportunity to be in my native country as part of Pallium India Trivandrum, as a visiting physician.
I would like to thank Dr. Ann Broderick of the University of Iowa, Pallium India, my colleagues in Calgary and my dearest family. If it weren’t for them I would have not been here.
I first heard of Pallium India a few years ago, in an email exchange with my nephew Thomas (Tom) Middlemiss, while he was working in Kerala. He was with Pallium India, and spoke highly of his colleagues and Dr. M. R. Rajagopal. I have been following Pallium India since its inception as a similar organization; Pallium Canada was registered for caregiver educational projects in 2000, I think. Three years later, I saw Pallium India mentioned in one of the international articles.
A Personal Connection To Palliative Care
Tom, originally from Scotland, is now a full-fledged palliative care physician working in New Zealand. He is the middle son of Josephine Middlemiss, who is my wife Margaret Dunn Chary’s sister. Margaret and I emigrated to Canada in the late 70’s. After a stint in Uranium City, Saskatchewan, We moved to London, Ontario to complete our residencies; Margaret in Anaesthesia and I in Radiation Oncology. On the day our dearest son Francis was born through a caesarean section, we found out something was not right in the rectus muscle. That turned out to be a poorly differentiated sarcoma, later labelled as likely “synovial” in origin. In short of three years, the sarcoma took Margaret’s life and I — having planned to move towards combined Surgical & Radiation Oncology after completion — moved away from Oncology.
Then, an opportunity came from my friend and colleague Dr. Paul Savage, and Francis and I moved to Saskatoon, Saskatchewan.
Six months after arriving in Saskatoon, I was walking in the corridor of St Paul’s Hospital when Dr. Fay walked towards me. After exchanging pleasantries she said that I should do Palliative Care. After hearing what was possible, she reminded me that they did not have the money but I would be rewarded in heaven, if I accepted the job! After talking to Drs. George Pylypchuk and Hugh McKee, I became the Medical Director of Palliative Care in the hospital!
My training was in Anesthesia, Surgery, and Radiation Oncology. I became a “family caregiver” at home for Margaret, along with Mary Sweeney my sister-in-law - a trained nurse - who was able to help to look after Margaret at home for a while. At that time, as I remember pain was managed with morphine syrup or injection. A few short acting analgesics - including demerol - were available but not as safe or “strong” as morphine. I could observe several adverse effects but Maggie did put up with them, as the pain was severe and unremitting. Maggie was an amazing lady, physician, friend, wife and mother.
At the time of Maggie’s death in London, Ontario I was blessed with wonderful support of Drs. Aloysius Dunn (father-in-law), Maria Dunn (mother-in-law) and Frank Dunn (brother-in-law), a (now) retired physician hospital administrator, retired Internist doing counselling, and a cardiologist. My colleagues, friends and family were sad like me, but very supportive in every aspect of my loss and grieving. Francis, my son would be three years old in a few months, and went with the flow.
I have been connected with Pallium Canada since 2001 and in 2007 organization became the Pallium Foundation of Canada; I have been one of the three founding directors and chairman of the governance board until recently and now hold the title of honorary chair
Arrival in Kerala and Introductions
I arrived at Trivandrum airport around eight in the evening on a Sunday to be received by Babu, who took me to the guesthouse. The next morning as I was getting ready in the 4th floor apartment overlooking Akkulam lake, the kitchen was busy and breakfast was being prepared. Pallium India had arranged the accommodation, along with meals and transport to Arumana Hospital to join my colleagues to learn and work each day.
The view from my guesthouse.
As I apporached the entrance of the building, I saw the sign “PALLIUM INDIA”; and below that it read “CARE BEYOND CURE”. I must admit, most of my colleagues feel that a name change away from Palliative Care is inappropriate. But it has a “branding” issue. Most people feel that it is end of life care. The words “Care Beyond Cure” are very interesting and have “branding” potential!
I was able to meet Dr. Sunil Kumar, and after introductions joined his team for the patient rounds. The manner with which the transition occurred, made it clear that I was not the “first visitor”. Everything was very smooth and professional, obviously having occurred several times before. At the end of the rounds tea and coffee was served in steel glasses. For me it was a bit tricky to hold the cup at the right spot and drink coffee without spilling or hurting myself. Sunil took me for lunch at the Udupi Hotel Restaurant. My colleague Dr. Brad Hunter in Calgary, knows very well my normal lunch, which is cold water! I did enjoy the lunch in a wonderful vegetarian restaurant. However as I spent more time there, I began to remember my childhood stories. My father’s family a few generations ago came from Udupi, Karnataka, which at that time was Mysore State.
Outpatient Clinic
Following lunch, Sunil held the outpatient clinic which had similar flair as the Tom Baker Cancer Centre in Calgary. I conduct a Complex pain and palliative care clinic there on Tuesday afternoons. At the end of the clinic, tea was served. I am becoming proficient in holding steel glasses with hot beverages.
It was very interesting to note the patient population’s diagnoses being cancer and non-cancer in equal numbers. The enthusiasm and professionalism of the staff was incredible. Dr. Sunil introduced me to Manoj, CEO of Pallium India, a soft spoken, attentive and enthusiastic individual with variety of goals, including administration and advocacy.
At the end of the day I went back to the guesthouse. I sometimes complain of traffic flow in Calgary, but after the ride to the guesthouse, I am not sure whether I am impatient or have hidden “road rage”. In Trivandrum, (as in most of India, I guess) if your “vehicle’s nose” is ahead you go forward and, unless someone or another vehicle is crossing your path, you always speed up!!
Musical Therapy
Before I left for the hospital the next day, I had realized that there was no mirror for shaving in the bathroom. It dawned on me that I could use my iPhone camera, which was a success. My son Francis would be very proud of my technical prowess.
The next morning started with breakfast and ride to the hospital. In the middle of the patient rounds I was suggested to go to Music therapy, a floor below. It was amazing; a wonderful vocalist was singing and rehab patients were totally immersed. After a couple of songs, one of the patients was able to sing his repertoire, which was exceptional and he appeared oblivious to his symptoms and thoroughly enjoyed it.
I was told that the next day individuals with paraplegia, and who use wheelchair for mobility would have a public awareness project in a shopping mall. Dr. Sunil also mentioned that on Thursday morning, I would conduct a workshop on safe use of methadone for pain with participants at the CCPPM training course.
A Special Article “Civil Society-Driven Drug Policy Reform for Health and Human Welfare-India” published in the Journal of Pain and Symptom Management this year, is testament to Pallium India’s involvement in improving palliative care in India. Methadone has been in use for “harm reduction” for 6–7 years, and is now being released for pain management in India.
A videoconference was arranged with Drs. Ann Broderick, Nandini Vallath, Sunil Kumar and Rajgopal who could join for a short time at 5:30 pm using Zoom, and discussed how to structure present educational material for safe use of methadone in India.
Following the videoconferencing, I took my exciting ride back to the guesthouse on the back of a motorcycle.
Public Awareness and Workshops
Next morning, went to the hospital and before lunchtime driven to Saphalayam complex & mall, where Pallium India was assisting the sale of goods prepared by paraplegic patients. There were presentations by the staff and patients and a very good public awareness campaign along with the sale of goods at the exhibition. We did return to the hospital and I was able to spend time in the CCPPM training session that afternoon.
The next morning it was my turn to present a workshop. It was an inquisitive, interprofessional & multidisciplinary group. There was a good discussion and participation was excellent. I was a bit nervous before the start but audience helped me to catch up with their discussion.
I had a chance to meet Dr. Rajgopal in his busy schedule and had met him in Canada couple of years earlier. He epitomizes devotion, motivation and persistence especially in relation to Palliative & End of Life Care in India. It is Dr. Rajgoal’s vocation and not a job. We exchanged pleasantries and he reminded me of Tom my nephew; Tom’s bicycling legacies with Pallium India and of course his work in rural Kerala.
Week 2 In Trivandrum
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was informed on Saturday that the exhibition at the Saphalayam Complex & Mall would continue on Sunday and, if I wished, I could be part of it. Fortunately, I was able to hire an auto rickshaw. The driver said 150, and I agreed, assuming he meant rupees. There were several staff members and volunteers there, and I had wonderful conversation with the volunteers. There was one volunteer — a now-retired engineer — who had worked in the Middle East, and was heavily involved in the exhibition. He bought me a cup of coffee and a few others joined in the conversation.
As they did, I suddenly realized that I do not speak Malayalam, nor am I able to have a conversation in any Indian languages. I must admit, sometimes I may seem to agree with my body language without knowing what the conversation was about! Normally when I come to India, it takes me 2 to 3 months to understand and speak a bit in an accent; most Indians think it is odd. In the hospital during rounds with patients, things are in a similar vein; One of them peering in to my eyes, animatedly explaining his present state. I was nodding as if I was part of the conversation, and it was a bit embarrassing for me. Often, I do simply state that I do not speak the language, in English.
The week was very educational for me and working with caregivers’ compassionate, wise and wonderful communicators was an honour.
On
Sunday night, I was told the apartment would have two more guests, as it accommodates three people. While I was working, Dr. Rajashree arrived in the evening. She works in her town as a physician, and helps to evaluate the participants of their CCPPM course during the last week of training. In the morning, I learnt that Sarah, a medical student from Berkley Medical School, who was involved in research with Pallium India, arrived around midnight. It appears she was in an accident had an injury to the foot and several of her friends had to bring her in a wheel chair. Lucky me, I was fast asleep, and missed the commotion!
Come Monday morning, Mrs. Kumari made breakfast for all of us and the driver picked us up on time to drive to the hospital. Sarah had crutches and kind of air-cast to stabilize her ankle and foot.
After the rounds at the hospital, the staff said we were going to lunch at a wedding ceremony. I remembered on Sunday that one of the volunteers had invited me for lunch and said he didn’t know the couple, but I was still not sure what this was all about. I went along to a wedding hall, which was almost across the main road of the hospital. Crossing the road can be hazardous in most cities in India, if you don’t know what you are doing! Despite 6 people crossing together, I had my own anxieties of being hit by a scooter or auto rickshaw. We safely crossed the road and found that the wedding was already over. I followed my colleagues in to a large hall with full of long tables and chairs on one side, which could have probably sat more than 200 people. Already some were eating, so we sat at an empty table. The serving team came with a roll of white sheet of paper and rolled it out and made the table look clean! Immediately after another server came with cut green banana leaf and spread it in front of each guest, which I remember was the “plate”. Next came servers in tandem, with variety of dishes. If I remember correctly, there were more than a dozen delicacies served, one after the other. I could recognize four or five of them including rice. Since I am not often a lunch eater, I stuck to what I know and-using my fingers as is tradition-I was able to complete my meal. After washing our hands, we returned to the hospital. Luckily, Crossing the road this time was a breeze, as there were no vehicles within 20 meters of our crossing.
As we returned to the hospital, I joined Sunil to see a patient for admission in the clinic with pain crisis, with fungating carcinoma of the mouth cavity. His wife was very articulate. After the visit I better understood some of the societal and cultural imperatives; especially for younger women when their husband is at the end of life. Family may associate with them until the death of the husband but it must be a struggle for the wife left behind, in several families.
That afternoon I had a chance to go to the rooftop, where I found a garden; where rehabilitation patients cultivate and variety of vegetables are produced, as part of therapy.
That night, I prepared some ideas for a teleconference the next day.
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ancer patients are seen in outpatient clinics and in the hospital but what surprised me was the variety of neurological patients with stroke, back injuries with paraplegia that were part of the care and rehabilitation. When I started palliative care a few decades ago, it was very much for cancer patients. Patients with AIDS have been part of palliative care the AIDS crisis, and now with triple therapy it has been much better. Now, we see more patients with organ failure, dementia and other neurodegenerative disorders.
That evening’s teleconference included more than 12 participants with interest in advancing the safe use of opioids, and especially methadone education. At the end of the meeting there was consensus to explore few ideas and Drs. Ann Broderick, Dawn Lockman and I agreed to assist. At the end of the meeting personally I felt that I had my “marching orders” to get a few things done while I was in Trivandrum. We did agree to continue collaborating in the best interests of Mother India as we move forwards.
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ednesday morning offered me an opportunity to present to the participants of the CCPPM course on the topic of opioids, including methadone. There was good interaction and I learnt some of the physician practices in India, including how to structure educational material.
Following that, Sunil had a house call for an 80 year old patient and her physician daughter, who was being looked after at home with help. She had respiratory issues, and is probably close to end of life, but is receiving CPAP most of the time. It almost felt like by different interventions life is being prolonged. But she appeared comfortable, even though she is not able take much by mouth. This is not an uncommon theme where I work, we are often negotiating with family & proxy decision makers as to what is appropriate. After speaking to Sunil, we have agreed I will go over the existing TIPS-ECHO material on methadone in the Library, to revise and hopefully by the end of next week share with the contributors and reviewers.
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hursday, mostly I worked on the material and saw Dr. Rajashree engaging the participants of the course in Dr. Bruce Davis Training Centre. Dr Davis’ picture is on the top right hand corner of the photograph below. His donations led to such a valuable centre to train caregivers.
F
riday morning as I was going up the stairs, I saw Dr. Rajagopal who stopped me to talk about a patient he was due to see in the outpatient clinic. A man over 65 and had obesity, sleep apnea with severe genu valgum (knock-knee) and a few other co-morbidities. Following several consultations with other caregivers, he had seen Raj earlier and was due to see him again today. At the last visit Raj had seen him and his wife; part of the conversation was not only about care, but the patient was wondering whether ending his life was a good idea. He was not depressed, but life has become a major burden with major disability. It appears that, after conversation with Raj, he was planning to explore surgery and explore other options.
Palliative care is about caring for people beyond cure and disease. In our practice in a tertiary care setting, we are more focused on, or talk about “total suffering” but always consider the disease, person and family. But sometimes we do wonder why we are being consulted! I mean to say that sometimes we have our own definitions of who is the right patient for us to see or not. This gets worse when the workload is high. I felt that the above patient (who I had a chance to see with Raj) is the right patient for palliative care to be involved in any part of the world. He and his wife’s suffering was immense.
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hat evening, I planned to go to Bangalore to see my sister-in-law Angelika and husband Wilhelm, as we had arranged earlier. After some more work on the educational material, I took a flight. Wilhelm greeted me at the Bangalore airport. We had a fantastic get together for two days and the brunch at the Sheraton went till 4 pm. After the brunch, I was driven back to the airport. We took a picture before I walked in to the airport, and I was back on the plane to Trivandrum.
