Featured Article

2019; Volume 20, No 6, June

Featured Article

Dr. Chitra Venkatesh attended the IAPC’s conference in Kochi, and returned with a plethora of voices to share.

Voices: Unique, strong and significant to sustain care for the suffering

‘Voices, Ensuring Quality, Creating Solutions’ was the theme of the 26th International Conference of the Indian Association of Palliative Care, held in February at Aeli Hills, Aluva, Kochi, Kerala, India. The theme was greatly relevant, as Kerala had witnessed one of the most devastating natural disasters in the form of ravaging floods in August 2018.

Voices from all over were heard at the conference in India this February.

I, as the Chair of the Scientific Committee, and the rest of the team strived to bring in many significant voices: a range of medical professionals and others belonging to different realms of palliative care. I am pleased to share some of the strong voices we heard during the three-day conference.

Setting the scene on the first day were: Ms. Ashla Rani of Pallium India; Dr. Stephen Connor, Executive Director of the World Hospice Palliative Care Association; and Ms. Bhavana Issar, founder and head of Caregiver Saathi, as well as a prerecorded video message from global palliative care advocate Ms. Lucy Watts.

The chance to speak one-on-one was another important way voices could be heard.

‘Disability is not an individual’s responsibility or a family’s responsibility, but our society’s responsibility. The Kerala model of palliative care has already shown how community participation can facilitate the removal of health-related suffering.’

— Ashla Rani, Pallium India

‘Inclusion of direct stakeholders of palliative care in all major aspects of palliative care — including advocacy, communications, policy development and governance — is a major step ahead.’

— Ms. Lucy Watts

‘My experience of being a palliative care recipient clearly indicates the need, the importance, and the value of using direct stakeholders in advocacy, communications, policy, and governance.’

— Dr. Stephen Connor

Following the first day, several voices that are committed, passionate, and bringing in unique models of care were heard. Dr. Sameera Jahagirder pointed out not only the discrimination and disparity in care provided to the transgender community in India, but also a lack of basic understanding of terminologies, like transgender and LGBTQI. She spoke of inclusive palliative care.

‘Creation of a respectful and non-discriminatory environment is a core tenet of palliative care for the transgender community.’

— Dr. Sameera Jahagirder

Exploring the priorities and personal and family preferences at the end of life by people in a rural tribal community in India, Dr. Ashita Singh voiced that:

‘Understanding of ground realities is crucial, strong family bonds should be used to strengthen support systems and planning for future end-of-life care still grapples with issues that are more basic to human dignity.’
‘Palliative psychiatry can take care of the gaps in mental health care and reach those ‘invisible’ people who may not otherwise be reached.’

— Dr. Bindu Menon, who spoke
of a palliative care model
for chronic mental illnesses

Voices from teams working in humanitarian settings emphasized the role of palliative care as an essential part of the holistic health care package in humanitarian settings. Vicky Opia from Uganda spoke of the work they do with the refugees in Uganda especially in the north:

Voices of ‘Thanal – Freedom on wheels.’ Initiated through palliative care, this group is now a voice for advocacy and rehabilitation for paraplegics.

‘Palliative care is a national priority in Uganda, yet access to services is limited, particularly for those in rural and marginalized communities of refugees. These require greater humanitarian and voices for inclusion right now.’

Dr. Mhoira Leng outlined the work in Gaza, the strong local leadership, and collaborative efforts to look at the need of integrating palliative care to address complex needs:

‘It is clear that such CHE (Complex Humanitarian Emergencies) and MCE (Mass Casualty Events) carry significant palliative care needs. These include pain and symptom relief from acute injury, holistic care for those who are seriously ill — especially if they are unlikely to survive or face chronic disease — and those who require prolonged rehabilitation, grief and loss support for carers and health care workers.’

I would wish to conclude this piece with one of the most striking voices, relevant to Kerala especially because of the memories and consequences of the floods in the same district but also the presence of the palliative care teams who have made a tremendous contribution to immediate and ongoing disaster-related issues. Athul Joseph Manuel in particular spoke of the role of community palliative care nurses, and the importance of their being well-equipped to deliver health care as well as primary psychological support. Their strength and sense of belonging to their respective communities, he said, was clearly visible and utilized effectively:

‘The greatest strength during that period was the fact that everyone came TOGETHER.’

Dr. M.R. Rajagopal (centre), head of Pallium India, with the Scientific Committee of IAPCONKochi 2019.

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