Indian Association of Palliative Care Conference: February 13-15th 2015, Hyderabad
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Hyderabad, city of pearls, was the venue for the 22nd International Conference of Indian Association Palliative Care conference (IAPCON) hosted by the palliative care (PC) team of the MNJ Institute of Oncology led by Dr. Gayatri Patel. It was not held in a Nawab's palace, but in Hitec city, a suburb, and an example of the rapidly developing India.
The conference commenced with a momentary reflection of the achievements of 2014, in particular the passing of final bill of the last government amending the Narcotic Drugs Psychotropic Substances (NDPS) Act, which facilitates the medical use of opioids throughout all the states of India. Also, the World Health Assembly (WHA) statement requiring all countries to integrate PC into their healthcare programs was acknowledged.
The theme of the conference was influence, innovate, integrate, and pushing the boundaries. This was ably achieved by the program. The content was broad and extended from health policy, evidence-based palliation, education to practical applications in community care (see full program at iapcon2015hyd.com)
There were many reports of increasing community PC services with varying roles of the volunteers, for example, West Bengal community project, Kolkata which was training around 1,000 volunteers to work in 10 Panchayats; but with trained staff led by Dr. S Bora from Tata MC Kolkata visiting weekly. By September 2014 the project had seen 169 patients and was continuing its evaluation. Other centers; for example, Hyderabad and Kochi; reported growth in their community programs, but with trained staff making the assessments.
Innovative use of technology improving communications and record keeping with handheld tablets was reported (S Anuradha, Hyderabad).
A new home team development from Ganga Prem Hospice, Rishikesh recognized the need for additional advice with complex cases and established a list of experts prepared to give free advice via the internet (email and Skype) reported Dr. Aditi Chaturvedi. They had discussed 92 patients in last 6 months and reported the scheme's success. One of the international specialist PC doctors was Dr. Brenda Ward from Taunton, UK who reported her involvement. Potential disadvantages of the system were: Time consuming sometimes; too many opinions; and potential time delays.
At a practical level an innovative feeding spoon had been developed for patients with swallowing difficulties particularly from head and neck cancers who would otherwise have probably required nasogastric tube feeding. This was presented by Dr. P Seshachar Kidwai Institute of Oncology, Bangalore who won the 1st prize in the oral presentations (this paper and others will be published in the Indian J Pall Care).
Dr. Mohana Sudaram (Tiruchirappalli) concentrated on how to provide cheap medicines and aids to help the 90% of the population who cannot afford to buy them. His team has developed a series of small, plastic, colored pots for the day's medicines to reduce the potential errors from polypharmacy.
He encourages patients and families to make their own mouth washes with a combination of iodine, hydrogen peroxide, salt, and two polo mints! He designed a soft-headed toothbrush (gauze dressing replacing the hair) to provide comfort oral care, a bag containing ash to reduce smells, and uses starch powder instead of expensive hemostatic preparations.
Unmet psychosocial needs were highlighted in two papers. One on the views and attitudes towards sexual functioning in men living with spinal cord injury in Kerala (Dr. M Sunilkumar Alpha Palliative Care, Thrissur) and the other identified the range of unmet issues experienced by adolescents and young adults with cancer (Dr. M Pruthi, All India Institute of Medical Sciences (AIIMS), Delhi).
The value of support groups was ably evaluated by Prof. David Kissane (Monash University, Melbourne). His work has consistently shown the contribution of group work for cancer patients particularly those depressed, single, or isolated. These are patients whose treatment outcomes are significantly worse; they present later and die earlier! He also stressed the importance of training for these group leaders.
The concept of spirituality as part of healthcare was addressed in a plenary session by Dr. Christina Puchalski (George Washington University Medical School and founder of the GW Institute for Spirituality and Health). Spirituality is expressed through beliefs, values, traditions, and practices. She has developed an educational program for students which encourage them to reflect on their values and beliefs and understand compassion in healthcare. She argues that as a practitioner we should consider ourselves as serving our patients. She takes students on “reflection rounds” which exposes them to interactive group reflection something that does not happen in traditional medical education programs. She has developed a spiritual assessment tool, defined competencies, and developed a mentoring program.
Integration of PC and critical care medicine was the subject of the winning poster (Dr. C Singh, Amrita Institute of Medical Sciences, Kochi). She reported the successful outcome of a close working relationship where there are regular joint rounds in the ITU, as well as a PC team presence at the family conferences.
The topic of integrating PC as part of critical care medicine in India was also addressed by Dr. RK Mani (Saket City Hospital, New Delhi and member of Indian Society of Critical Care Medicine (ISCMM)) who with the Indian Association of Palliative Care (IAPC) have produced a joint statement recommending guidelines of good practice in order to avoid the unwanted predicament of futile intensive care management at end-of-life.
Dr. Naveen Salins (Tata Memorial Hospital, Mumbai) presented the experience of integrating PC in a large hospital reporting the range of involvement and two new developments with stem cell transplant patients in hematology as well as patients undergoing interventional radiology. Salins estimates that acute PC teams are currently present only in about 15% of Indian hospitals. He is involved with an educational program to further develop the acute PC unit (APCU) model of care.
PC developments from five neighboring countries were presented; and the support and influence of Indian PC was apparent notably in Bangladesh, Sri Lanka, and Thailand.
I have only been able to highlight a few of the excellent presentations for which I apologize to the many not mentioned. However, finally I would like to capture a few headlines from the plenary sessions.
Dr. Liz Grant (University of Edinburgh) remarked that health is uncompromisingly complex and global health faces what Sir John Beddington has called “The Perfect Storm”; highlighting the rapid rise over the last 50 years of population, life expectancy, rise in GDP, and increase in CO2 emissions. In addressing these problems, PC needs to speak to the world community and strengthen its role in healthcare systems.
Dr. Diederik Lohman (Human Rights Watch) reminded us that it was Margaret Somerville in 1992 who first proposed that the relief of pain should be regarded as a human right. He documented the progress since then up to the WHA statement in 2014 and the ongoing World Health Organization (WHO) activities including the Technical Advisory Group (which includes Drs Rajagopal and Kumar). He encouraged us to continue advocating and focus on:
1/Telling the PC stories
3/Identify government obligations and responsibilities.
Dr. Simon Sutcliff (International Network Cancer Treatment and Research (INCTR), Canada and President of Two Worlds Cancer Collaboration) very capably drew from the advocacy experience with the global cancer control agenda. He argued that PC needed to develop compelling arguments to challenge health provider attitudes who argue that there is “No business case for PC”, or prioritize what he calls “The tyranny of acute care needs”. He provided very insightful arguments that all PC advocates need to have ready.
Dr. Mhoira Leng (Makerere Univ, Palliative Care Unit, Kampala) developed the themes of PC influence and integration as exemplified by several Indian projects, for example, the new MD program at the Tata Memorial Hospital, the Mehac project in Kochi, the collaboration between Cipla Pharmaceuticals and PC in Pune, and the Emmanuel Hospital Association 20-hospital training program which also includes PC training and education in Tanzania. Also the University of Edinburgh and Tropical Health Education Trust (THET), UK project in four East African countries.
In a session devoted to Pediatric PC, Dr. Steven Connor (Worldwide PC Alliance) reported on a global needs assessment that he had undertaken and proposed some challenging gaps to fill.
Dr. Julia Downing (International Children's Palliative Care Network (ICPCN)) reported the outcomes from a Delphi study on research priorities. These were: Children's understanding of death and dying, managing pain, and funding for research.
In two separate presentations, Dr. K Collins (Tanzania experience) and Joan Marston (ICPCN working in India and Malawi) highlighted the need and value of mentorship in supporting staff following initial PC training.
The President of IAPC, Dr. Nagesh Simha, identified the challenges in India following the NDPS Act amendment. There is a need to write national policy and encourage every state to develop a PC policy.
He reported that there were further MD programs approved by the Medical Council of India (MCI), for example, AIIMS, Delhi. There have been 15 Commonwealth scholarships allocated to Indian doctors to undertake the University of Cardiff, Wales, Diploma in PC. The Cardiff team are also helping to develop an online PC teaching program for India (currently there is a modular program for sub-Saharan African students on the ecancer.com website).
IAPC (led by Dr. Stanley Macaden) is a collaborator in the International Collaborative for Best Care of the Dying Person (ICBCDP), a new initiative coordinated by the Marie Curie Palliative Care Institute Liverpool (MCPCIL) in UK. The project in 2015 will evaluate the MCPCIL Integrated Care Pathway for end-of-life care in 20 Indian hospitals.
Finally IAPC awarded Prof MR Rajagopal (not present) an award for his distinguished service to PC.
I have attempted to provide a flavor of the many current activities of Indian PC that were presented at this conference. I have been privileged to attend the majority of these conferences over the last 15 years and experience the increasing sophistication of the presentations as well as the range of research topics. While there are still some researchers whose methodology is weak I would encourage all inexperienced researchers to seek access for help with methodology and to present their proposed study to their colleagues for critical comment. This would avoid, for example, results of statistical tests being presented from too small a sample size or the inappropriate use of closed questions in qualitative studies.
Organizing a large conference (650 delegates) is a challenge, but I always observe that the posters could have been given a higher profile. It is usually the first place that young researchers present and I feel they should have equivalent appreciation.
I enjoyed and benefitted from this well-constructed conference and would extend my thanks to Dr. Gayatri Palat, Dr. Chitra Venkateswaran, and the entire team for their achievements.