Ambala, is a city in the state of Haryana about three hours by train to the north of Delhi tucked in beside Punjab to which Haryana was once joined and with which it shares a capital Chandigarh – a planned city with a lake; a bit like Canberra with mango trees. We had visited Ambala the previous year when we spent just 8 hours there; a stopover en route to Jalandhar and Amritsar, having been there to visit the Ambala Rotary Cancer and General Hospital.

The story of Ambala Rotary Cancer and General Hospital is an interesting, possibly remarkable, one. Ambala Rotary Club, instead of donating a park bench to the city council, with the help of a local benefactor decided to build a cancer hospital. They have since gone on and, among other things, established a palliative care Home Care team with a nurse, a nursing assistant, a driver and, sometimes, a medical officer serving the needs of the more disadvantaged members of the community without charge.

Our contact in Ambala is Rotarian Mr Subhash Bhansal, a retired businessman who is the driving force behind the developing palliative care service. He does not work alone, however, and is supported by a group of Rotarians who are both organised and committed; the absence of a trained health professional does not appear to have been an impediment although they have been mentored and supported at a distance by the redoubtable Dr Savita Butola.

This time we were back for a week to spend time with the Home Care team and give a series of talks raising awareness of palliative care in and around Ambala. Our programme was full and mixed and had been advertised in the local newspaper so that everywhere we went patients came for consultations. It was a little odd to have patients and their families sit in on our presentations and then queue to be seen by the Australian doctor.

• 30/1/2017: Arrived in Ambala. Seminar at Nanyola village.
• 31/1/2017: Visits with Home Care Team. Tutorial with medical and nursing staff at Rotary Hospital.
• 1/2/2017: Lecture to nursing students at Philadelphia Hospital, Ambala City. Patient consultations.
• 2/2/2017: Lecture to nursing students Mahabir University. Patient consultations.
• 3/2/2017: Visits with Home Care Team. Presentation to Ambala Rotary Club.
• 4/2/2017: Lecture to University students at Sanatan Dharma Lahore College. Patient consultations.
• 5/2/2017: Visits with Home Care Team. Return to Delhi.

In our two previous visits to India we had struggled with the language as we endeavoured to talk to patients or teach. The Rotarians of Ambala fixed that. They provided us with two “translators”. Delightful young men, non-medical university students, with excellent English, who accompanied us everywhere and… translated. It was a bit of a struggle at first but as we got to know each other we developed a good rapport. They were also able politely to keep us culturally appropriate. It is difficult to overstate the helpfulness of these young people.

Our translators were, however, only one facet of the excellent organisation we enjoyed. Every morning we were collected from our hotel and taken to where we needed to be, driven around and taken back to our hotel at the end of the day. Every evening we were entertained by Rotarians, either in their homes or once in a restaurant in Chandigarh. The hospitality was warm and generous and we valued the opportunity to connect with these new friends who support palliative care in Ambala.

The home care team while small is certainly hard working. Attending to wound dressings is a large part of their work and we were able to work with the team to demonstrate an alternative non-stick dressing using petroleum jelly (Vaseline) to replace the Betadine soaked dressings previously used. This is an inexpensive dressing and petroleum jelly is readily available. Services offered by the home care team are limited by the lack of training in palliative care and support from other health professionals, particularly medical support. Access to medical advice seems to be limited and inconsistent, at least during the period of our visit.

Shortly after returning home we prepared a formal report for the Palliative Care Committee in Ambala which made a number recommendations based on the Indian Standards for Palliative Care and which we believe are achievable given the Team’s current circumstances. At a meeting on 10/3/2017, the Committee resolved to address the following:

1. Establish a system of clinical documentation which was lacking.
2. The Home Care team does not have access to a medical officer on a daily basis. The Committee has identified an interested doctor in the hospital who will be available to the home care team on a daily basis.
3. A nurse from the home care team and a doctor from the hospital (the interested doctor) will enrol in the IAPC Certificate Course in Essentials of Palliative Care. The next course starts in June 2017.
4. The intention is that the doctor will proceed with whatever they have to do to be able to prescribe morphine or other opioids.

We have developed a soft spot for Ambala and the people we met there for their warmth and enthusiasm and look forward to returning in February or March next year (2018).

David and Jane MacKintosh

In November of last year I had the privilege of returning to Silchar and visit our friends at the Cachar Cancer Hospital and Research Centre. The team from the previous year (David Brumley, Joan Ryan, Niamh O’Connor and I) were joined by the fabulous Liese Groot-Alberts, a New Zealand based grief therapist and lecturer. We were warmly welcomed by Dr Iqbal Bahar (Palliative Care Physician), Dr Ravi Kannan (Hospital Director) and his wife Seetha, Sarita (Head Nurse) and many familiar faces from our previous visit. Last year the hospital had suffered severe storm damage and it had taken some time to recover, therefore they were extremely grateful for the very generous donation from APLI members.

The focus of this years visit was the development of a community program or “home hospice”. This provoked many discussions as there is already a well established community nursing service. We all attended several home visits involving bone shaking journeys in the ambulance. A trek across a paddy field was something of a first for me although the nurses didn’t seem too phased. Once we arrived at the two roomed home, we were met by beaming faces and a grateful bedbound lady. While there was some discussion over the cause of her paralysis, there was no doubt that the large pressure sore on her hip required ongoing nursing intervention. Her only respite from the four walls with two tiny windows was the monthly trip to the hospital for catheter replacement. This to me epitomised a community/home hospice service.

Spending more time with nursing staff strengthened our relationship. They were hungry for information to improve their practice and patient care. A recurrent issue is the lack of documentation. Whilst substantial improvements have been made since previous visits, the opportunity to discuss further improvement presented itself. The nurses were assessing patients and adapting care individually, however this was not being documented. Verbal handover and memory was heavily relied upon.  After discussions with Sarita a tool for oral assessment was trialed. (As many patients receive treatment for head and neck cancer, mucositis is prevalent). After a couple of lively teaching sessions where the nurses assessed each other using the tool, we took them to the bedside. The nurses found it a great experience and the patients really enjoyed being part of the learning exercise. The nurses appreciated the benefit of using a tool to improve patient care and team communication. Limited internet and printing facilities are ongoing issues that could impede the sustainability of this change. Laminated copies of the various assessment tools have been sent and discussions are underway to continue ongoing education.

One noticeable difference this visit was fewer public awareness sessions and outside talks. Although this time I was fortunate enough to teach 75 nursing students at the nearby medical school about palliative care. This marked progress for the Cancer Centre whose previous approaches to the Medical School have been denied. It was far from plain sailing with a complete technology failure. Also, the students were very shy and took some coaxing, but eventually they started to interact. At the end of the session there were the obligatory selfies, but this time with an autograph! The Nursing Professor was grateful and talked about arranging future sessions and clinical placements with the hospital.

Liese’s focus in this visit was on the psycho-social and spiritual aspects of care in the hospital as well as in the community. She worked together with Ms Keshav Sharma, a psycho-oncologist in charge of the Department of Preventive Oncology. Keshav links with the hospital social workers, whose task- amongst many others- is to fill in the admission forms and make quality of life assessments with patients.

Keshav has a huge workload, conducts trainings for staff in communication skills as well as providing case study teaching with the focus on reflective practice. She also teaches counselling skills to the social workers.

And the whole team teaches cancer awareness and tobacco awareness in the community.

She has been a tremendous asset in the workshops conducted by Liese, not only translating, but actively adding her knowledge and insights, making sure that the content of the workshops is firmly anchored in local culture and works with what is realistically possible in the local setting. A great collaboration. There are plans to collaborate more fully and design further trainings together, should another visit be possible for Liese.

Corruption is common in India and during this trip we became innocent bystanders to the Prime Ministers attempts to eradicate the “black money market”.  In his endeavours to rid the country of undeclared funds and recoup some taxes, Nareendra Modi introduced the demonetisation of 500 and 1000 rupee notes, the announcement coming at 7pm and effective from midnight. (This news didn’t make the front pages anywhere else as it happened on the night of the US election).  We were leaving the next day and had all exchanged money prior to leaving home and of course our only denominations were 500 and 1000 notes. Ravi came to the rescue, very kindly exchanging some rupees each so we could buy some sustenance at the airport. The ATMs and banks were closed during the initial days of the crisis, meaning that we could only pay using credit cards, curtailing our post visit shopping.

As with the previous visit I came away enriched and humbled. We had learnt much from them and hoped they benefitted from our insights. The Cachar Cancer Hospital and Research Centre continues to provide such an invaluable service in an area of great need, and it is real privilege to be able to share our experience to help them.

Lisa King

Coimbatore is also the textile centre of India and evidenced by the ‘silks’ on show. As a woman it was difficult not to covet the beautiful Sari of a delegate as you were absorbed in conversation at the conference or observing from the audience. The Faculty dinner brought out some of the most vibrant shimmering silks. At the conference itself, unlike those closer to home, where the exhibition hall would be filled with pharmaceutical displays and novel coffin displays or the like, the silk merchants sold their best. It was akin to a ‘feeding frenzy’ at each break with women delegates including myself eager to bring home a beautiful piece – a wonderful memory and souvenir.!

The program was of an excellent quality thanks to efforts of the international lead of the Scientific Committee, Odette Spruyt, and drew an audience from 17 Countries and every State of India. The science, the art, the research evidence and methodology and quality improvement approaches to care were addressed by leaders in their field, including inspiring Indian and regional speakers and some Internationals including Keri Thomas, Karl Lorenz, Stephen Connor, Mhoira Lang and our own Janet Hardy.

One of the standout sessions was “ Hidden Lives Hidden Patients’ which provided insights into the plight of those with persistent chronic mental disorders, the transgender patient, the refugee at end of life, those who are homeless and those effected by natural disasters such as in the Nepal earthquake. This was a very ‘rich’ moving session and cause for much self-reflection.

There were insights into palliative care developments occurring across India with a session that laid out state by state service delivery coverage, highlighting some of the progress but overall the glaring inequities of service access across India.

The session regarding palliative care in degenerating neurological conditions drew a large audience. A neurologist’s perspective was given by Dr Suvarna Alladi and Palliative Care perspective by myself, where I concentrated largely on the difficult problem of sialorrhoea in motor neurone disease, where there is a dearth of evidence as to the optimal management.

The psychological dimensions of neurodegenerative diseases, and practical nursing issues were covered well by Dr Anuja Panicker and Ms. Shakila Murali respectively. The sessions came alive with the Q and A session when a particularly probing question came from a respiratory physician from Bombay, struggling with the end of life care of one of her patient’s with MND. In the context of the law in India, withdrawing life -sustaining treatments remains very difficult if families feel duty bound to continue treatments.

Reflecting on a recent clinical case of my own, provided an insight for the physician and the audience as to how this might be managed.

I subsequently received an email from the physician regarding her difficult case. “I thoroughly enjoyed your talk and gained immensely listening to you. I wanted to also inform you that my patient of MND passed away on a midazolam drip. I greatly appreciate your help”

Reflecting on such feedback validates our contribution in supporting improved knowledge and hence cares of such vulnerable patients and families everywhere.

The fellowship extended throughout the conference, with copious amounts of delicious food, great music and the warmth of engagement extended to all ensures that many of us will return again to this enriching Palliative Care Conference.

Carol Douglas

The hospital has grown before my eyes. Even in the four years since my first visit, bed numbers have grown from 60 to 100, with 200 staff now. Outpatient numbers have grown dramatically, so that there are now about 3000 new patients and 14000 reviews each year. The hospital has a new ICU, new accommodation for staff and many other improvements just in the last year.

Assam is a poor State of India. Tea production is a major employer in this part of Assam. The plantation workers are very poor and their reliance on piecework causes real fear of the costs of treatment, resulting in late disease presentation. More than half of the patients seen at the hospital earn less than R3000 per month ($A60). It is typical of Cachar Cancer Centre that they have actively engaged with these social problems with programs of community education, outreach clinics, financial assistance and other creative responses such as employment for patients and families at the hospital.

Much of the development of the hospital has been due to the efforts of Dr Ravi Kannan. A commentary on his work can be found at http://www.thebetterindia.com/48284/cachar-cancer-care-silchar-assam-doctor-kannan/ . An accomplished surgeon and oncologist, in addition his skill has been to cultivate an entire team of doctors, nurses and support staff who exhibit the same selfless energy in their work.

We were welcomed at the airport and driven through Silchar town to the hospital by Dr Iqbal Bahar, Nurse Sarita, the head nurse of the palliative care ward, and Mr Kalyan Chakravorty, the Chair of the Cachar Cancer Centre Society. We worked in several areas on this visit. We engaged at a direct clinical level with nurses and doctors, sharing ward rounds in the palliative care ward and occasionally elsewhere, discussing individual patient problems. These were commonly related to pain and physical symptom control but also included much discussion of the social problems of the patients and families. Niamh and I spent regular time in the outpatient department with Dr Bahar, the palliative care physician, gaining a great respect for his ability to work effectively in a hot, cramped and busy space. His workday is boggling by our standards. So too is his flexibility: no waiting for a pleural tap or an abdominal ultrasound – it’s done on the spot. This is a good teaching for those of us who are mired by protocol.

David in outpatients

Joan and Lisa spent time with the nursing staff in the ward and also in formal teaching. They also examined the nurses for their hospital palliative care certificate, and presented certificates to the successful nurses at the end-of-visit party.

Niamh handing out certificates

A recurrent theme in our past discussions had been the difficulty in providing follow-up to patients after discharge from the hospital. This is a result of the very slow roads and the cost for patients of being away from the workplace. Since the last visit two telemedicine centres have been established at a distance from Cachar Cancer Centre. Patients attend these centres after discharge and the staff at the centres communicate with the nurses and doctors at the hospital. Although not qualified as nurses, they provide a contact point for staff and arrange the sites for the regular fortnightly visits by the hospital team.

We were also given the chance to speak to large groups of interested local people, and to spread information about cancer prevention and palliative care in these areas. In particular, smoking and chewing tobacco cause many oro-pharyngeal cancers. One such speaking engagement was at Karimganj, a small city on the border with Bangladesh, and a difficult drive from Cachar along the Barak river. There Niamh spoke to a large group of local people, including nurses, in a tent erected for the purpose by the Rotary Club of Karimganj.

Joan and Lisa at Karimganj community meeting

All of us had the chance to present tutorials and lectures on a very regular basis. Dr Iqbal enjoyed challenging us by asking all of us for yet another lecture at very short notice! An afternoon visit to a tea plantation and discovered a talk was required immediately on our return! We were all glad we brought our laptops with us.

We were constantly socialising over meals, both at the lunch cafeteria but also over the frequent dinners with staff members. This gave us the chance to talk about some social issues, and one such issue was that of truth telling. It is not usual practice for doctors in this part of India to tell patients bad news, but they usually tell a family member. It was interesting to find that this is beginning to change, and we were able to add our voices to the debate, and ask whether or not this represented a deeply held cultural belief. We hope to be able to discuss this matter further in planned ongoing Skype sessions.

We were given some relaxation time too. We had a delightful boating afternoon on the Barak river: on a small boat seeing the lives of the people in this riverine land. We had an evening celebration on leaving, at which dressups and singing were required!

We all hope that you might consider a similar venture to this. Many palliative care staff have expressed interest but at the same time wondered about their skills. The main requirement is a willingness to engage with and enjoy the experience of another culture. In the process of doing this, the differences fade and the learning is shared. The generosity of the people in places such as this reinforce my faith in human nature, and act as a powerful antidote to any ennui that might develop in the course of our normal lives. Go for it!

Rabindranath Tagore says it well in Poem 63 of Gitanjali.

“Thou hast made me known to friends whom I knew not. Thou hast given me seats in homes not my own. Thou hast brought the distant near and made a brother of the stranger.”

There is widespread recognition of the importance of palliative care, with major advances in policy and advocacy in recent years (1, 2). One of the most significant advances was achieved at the World Health Assembly in 2014. The Assembly voted in support of strengthening palliative care as a component of integrated treatment throughout the life course, in recognition of the essential nature of palliative care in health care (1). They recommended that evidence-based, cost effective and equitable palliative care services be available within the continuum of care, across all levels.

Implementation of these advocacy advances now rests squarely on the shoulders of the international palliative care community working in partnership with key cancer and other organisations.
There is no time for complacency or perspectives limited to national borders, as we cannot avoid the evidence of unrelieved, human suffering which is presented to us through the social and traditional media and other forms of information sharing.

For example, it is estimated that 42 % of the world’s countries have no delivery system for palliative care services and that integration of palliative care is achieved in only 20 of the world’s 234 (8.5%) countries (3). In addition or perhaps, as a result, 80% of people are unable to access treatments for pain relief (4) and only 7.5% of the world’s population live in countries considered to have adequate opioid consumption (3). The needs of children in particular, are often neglected (3, 5) but there are many other groups which remain hidden from view, such as people with dementia, the homeless and those living in remote and rural areas. The distribution of access is skewed toward economically more developed countries (6). When poverty is combined with political instability, war, populations on the move and humanitarian crises, introducing this essential component of health care requires strategic, creative, coordinated, policy and education-driven efforts on a scale as yet far from realised.

At the IAPC conference, Hyderabad, in February 2015, I listened to a plenary by Professor Simon Sutcliffe in which he urged the palliative care community present to change our conversation about palliative care and revitalise our efforts to drive development. He urged alignment with the efforts to achieve global cancer control, rather than distancing and engaging in a polarised or competing discourse, the either – or discourse between these two aspects of cancer care. He challenged us to recognise that the drivers of global cancer control -burden, mortality, morbidity, disability – also drive the need for palliative care, especially in countries where resources are least and cancer burden is greatest. We do not need to make a business case for palliative care so much as a moral and ethical case for humane, expert care of those suffering at the end of life, who have a right to expect relief of pain, distress, support for their caregivers and whole person care. Such relief is likely to result in an increased capacity for engagement with family and community, renewed independence and improvement in societal, not just personal, quality of life.

We need to be open to new collaborations and new thinking to address current global inequality.

An important change needed to improve palliative care for patients with advanced illness is finding ways to achieve better integration of palliative care into cancer or other speciality areas of health care. This change involves developing and testing new models of palliative care practice which foster integration (7, 8). There are encouraging reports of new models of palliative care service delivery within renal, respiratory, cardiac and intensive care medicine, to mention only a few (9-11). Features of integrated models include increasing palliative care services in the ambulatory care setting in acute medical centres (12), participation in specialist multidisciplinary team case conferencing, mutual sharing of expertise between palliative care and the respective other specialty area, research collaborations, and training opportunities across palliative and acute care specialities for trainees.

Looking at integration of palliative care into cancer care in particular, there has been a growing acceptance of the essential nature of palliative care in cancer care with key organisations such as ASCO, NICE, and ESMO promoting this for several years now (13-15). There is recognition of the range of benefits this brings, including better symptom control and quality of life (16), more caregiver satisfaction, fewer ICU deaths and fewer hospitalisations (17), and longer survival in metastatic lung cancer (18). Yet despite this, progress is slow and increased financial support for the development of palliative care, even in Europe and the USA, is lacking (19, 20).

In the recently published 2015 Quality of Death index (21), it is apparent that advances can be made despite scarce resources, when the triad of policy, education and access to essential medications is activated (22). In Panama, policy changes at primary care level have driven integration, in Mongolia, the focus on education by leading champions and the development of hospice facilities have been key and in Uganda, a significant increase in access to opioids has improved the quality of dying.

Identifying and supporting champions on the ground is critical to development. Finding ways to effectively grow that support in order to reduce the burden of unrelieved suffering related to health deterioration, is a critical challenge for all of us who enjoy a high level of health care development. We look forward to exciting developments ahead and challenge the next generation of palliative care specialists to use their innovativeness and energy to apply existing knowledge in new and creative ways.

– Assoc. Prof. Odette Spruyt

References:
1. Strengthening of palliative care as a component of integrated treatment throughout the life course, (2014).
2. ESMO. ESMO Press Release: ESMO, UICC, NCD Alliance and Other Endorsing Partners Issue Palliative Care Statement at WHA 2014 [cited 2015 12.3.15]. Available from: http://www.esmo.org/Press-Office/Press-Releases/ESMO-UICC-NCD-Alliance-and-other-endorsing-partners-issue-joint-statement-on-palliative-care-at-67th-World-Health-Assembly.
3. WHPCA. World hospice and palliative care day 10 October 2015 Hidden lives, hidden patients 2015 [cited 2015 October].
4. WHO Briefing Note. “Access to Controlled Medications Programme,” 2009. Available from: http://www.who.int/medicines/areas/quality_safety/ACMP_BrNoteGenrl_EN_Feb09.pdf
5. Wolfe J. Recognizing a global need for high quality pediatric palliative care. Pediatr Blood Cancer. 2011.
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17. Higginson IJ, Evans CJ. What is the evidence that palliative care teams improve outcomes for cancer patients and their families? Cancer J. 2010;16(5):423-35.
18. Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, et al. Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer. New England Journal of Medicine. 2010;363(8):733-42.
19. Hui D, Elsayem A, De La Cruz M, et al. Availability and integration of palliative care at US cancer centers. JAMA. 2010;303(11):1054-61.
20. M.P. D, Strasser F, Cherny N. How well is palliative care integrated into cancer care? A MASCC, ESMO, and EAPC Project. Support Care Cancer. 2015.
21. Economist Intelligence Unit. The 2015 Quality of Death Index. Ranking palliative care across the world. 2015.
22. World Health Organization. Cancer pain relief: with a guide to opioid availability, 2nd ed. World Health Organization, 1996.