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Palliative care in Kolkata – a lesson for us all.

- Anil Tandon

Working as a volunteer in India I always seem to learn more than the stated intention of travelling to India to teach others. In October 2015 I was fortunate to spend a week in Kolkata with my good friend and colleague, Santanu Chakraborty, and this trip reaffirmed this. Santanu is an incredible individual who left his career as a professional tabla (a form of Indian drums) player in order to establish a palliative care service 35km from the city centre on the northern outskirts of Kolkata.

I was initially introduced to Santanu in approximately 2002 when he was at the start of his journey to found the Ruma Abedona Hospice (RAH). Named in honour of his late wife, RAH is volunteer driven organisation providing predominantly community based palliative care. In 2005, the Ruma Abedona Hospice building was officially opened by Dr Rosalie Shaw and initial work concentrated on a community model of care together with a day hospice facility. In 2007 Santanu was the first non-health care professional applicant to be accepted into the Flinders University Certificate in Palliative Medicine, and as part of this course he spent time with me at Sir Charles Gairdner Hospital for the clinical component of his learning.

In 2012, Santanu was invited by the General Manager of Chittaranjan National Cancer Institute (CNCI), the sole public cancer hospital located in the centre of Kolkata, to enter into a formal partnership with them. After two years of discussions and planning, RAH volunteers began an outpatient clinic. It was on the background of all of this work and steady progress that I finally took the plunge and accepted an invitation from Santanu to spend a week with him, to observe RAH in action and hopefully provide some education to him and his team of volunteers.

As luck would have it, the timing of my visit was remarkable for two reasons. The first was that I was in Kolkata the week before the annual Durga puja. In India there is a great deal of regional variation as to which of the various gods and goddesses are more closely worshipped. In the state of West Bengal, the goddess of Durga rules supreme and the annual puja, or prayer ceremony, in her honour literally causes the state, and its capital city of 14 million people, to spend a week beautifying itself and then a week in shut-down when the puja occurs.

The second reason was that I left Australia just as The Economist Intelligence Unit and Lien Foundation released their second Quality of Death Index report to coincide with World Hospice and Palliative Care Day. This report was notable because it spoke clearly of low income countries that were able to provide excellent palliative care through models of innovation and individual initiative; that quality of care requires not just access to opioids but also inter-disciplinary teams that provide psychological and spiritual support to patients and their families; and that community-based efforts to raise awareness are essential. All of these features were made real for me by the extraordinary team of local Indian volunteers who give their time so freely to RAH.

Santanu is a highly professional manager and lay clinician whose vision and determination has enabled the organisation to grow steadily over the last 10 years of service provision. Although they do not yet have the ability to prescribe and dispense morphine, RAH has demonstrated to me that in a grass-roots model of community and outpatient palliative care, trained volunteers operating as nurses and social workers can provide equal or superior care to what is provided in many settings in Australia. Certainly this point was obvious to me as I sat in a cramped and basic outpatient room in CNCI to observe a palliative care clinic where patients and their families would see the doctor in one room and then move to the next room where they would meet with the RAH volunteers for wound care, psychological support or perhaps just because they knew there would be a friendly face and a listening ear. It certainly is a model of superior palliative care that I wish I had access to in my clinic in Perth where consultations are dominated by completing reams of paperwork and reviewing results of the latest PET scan.

Santanu had organised two whole day workshops for me, with topics including a general introduction to palliative care, communication skills, wound care and lymphoedema management. Despite these attempts to impart some knowledge to the teams at CNCI and RAH, I returned home to Australia much richer, having seen what one man with determination can achieve and the power of community volunteering at its zenith.

Project Focus

As some of you may be aware, in early 2016 the Asia Pacific Hospice Palliative Care Network (APHN) held four ‘APHN Dialogs’, in which clinicians across the Asia Pacific region could link in through Skype to attend a webinar. The following webinars took place:

- A discussion of palliative care service development in the Asia Pacific region, presented by Odette Spruyt
- Pain control in palliative care by Yoshiyuki Kizawa from Kobe, Japan
- Management of the cancer wound by Edward Poon from Singapore
- Bereavement care by Jun-Hua Lee from Taiwan

These sessions were well received and provided a valuable opportunity for clinicians in different countries to learn from an expert in that field and also to share their own professional experiences. Unfortunately, not all countries in the region have reliable internet coverage or sufficient bandwidth so some attendees were unable to join the meetings. In response to this, in recent months APLI has been looking at a new educational initiative in partnership with APHN.

Project Focus aims to set up online discussion groups between palliative care clinicians in specific countries in the Asia Pacific region and APLI mentors. Some nascent palliative care centres struggle with isolation, limited practitioner experience and variable institutional support. In effect, Project Focus would work towards similar objectives to Project Hamrahi: to improve the capacity for best practice patient care in the local setting and to reduce the isolation of palliative care providers in emergent services.

APLI is therefore calling for expressions of interest for mentors to volunteer their services to help support our regional partners. Project Focus would particularly suit clinicians who might otherwise find it difficult to travel overseas for mentoring work, as the contact will be online using a small group discussion format on the ‘Slack’ communication platform. APHN has already identified local clinicians in two separate services in remote and regional Indonesia who would like to be partnered with APLI mentors. In addition to this, there has also been some interest from doctors in Vietnam, Brunei and Nepal whose learning needs were unable to be supported by the APHN Dialogs.

Although the exact process will be flexible, it is proposed that education would begin with case presentations from the local APHN clinicians. These would then serve as a springboard for the APLI mentors to explain current evidence based practice recommendations. The subsequent discussion would then take into account local factors such as medication availability, local resources, staffing and other factors such that a viable and culturally appropriate management plan can be formulated.

I hope that you will share our excitement for this initiative. Project Hamrahi has demonstrated the value of teams of mentors made up of both doctors and nurses working together with local Indian clinicians over a sustained period of time. Project Focus has the potential to broaden the scope of such partnerships to other countries and so I invite you to contact me via chairman@apli.net.au with a short biography and reflection on why you would wish to work as a mentor.

- Anil Tandon

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Your donations to APLI help in the following ways:

assist with training of doctors and nurses in palliative care practice in developing nations

support nurses to travel and teach as part of Project Hamrahi

help with purchase of critical site resources such as essential equipment and supplies,  medicines and educational materials