Dr. Katherine I. Pettus, PhD, IAHPC Advocacy Officer for Palliative Care Medicines, with her latest advocacy news.
IAHPC teamed up with Cardiff University and Help Age India to present a workshop on provider advocacy in the lead-up to the 9th Open Ended Working Group on Ageing, to be held at the United Nations in July this year. Cardiff University School of Medicine Course Director Fiona Rawlinson and Help Age India CEO Mathew Cherian led participants in a discussion of evidence, barriers, and opportunities for advocacy.
The unprecedented opportunity to raise government awareness of the issue of palliative care for older persons, and the work that providers are doing on the ground, is embodied in the OEWGA9 itself. The main barriers that workshop participants identified were: lack of awareness of the value of palliative care (of the public, other providers, and government officials); resistance of other medical providers; and lack of time and resources for advocacy.
Dr. Rawlinson recommended that palliative care teams designate one of their members — a volunteer, physician, pharmacist, nurse, social worker, chaplain, or aide — to be the “go-to” advocate. This recognition of the importance of advocacy expands the traditional idea of a multidisciplinary team, and will help to raise the profile of palliative care at all levels, from the local to the transnational. Workshop participants voiced the need for more palliative care advocacy training in India tailored to the needs of the regions and contexts, recognizing that one size does not fit all, given the vastness and variation throughout the Indian subcontinent.
Mr. Cherian’s inspiring presentation on Help Age India stressed the dire situation of older persons, and especially the 19 million older widows, in India. He spoke from long experience of the need to build coalitions with other civil society organizations, and for advocates to master the evidence and facts, and to memorize an effective ‘elevator pitch.’
After much reflection and practice, Help Age India’s brief and powerful public message is, ‘Dignity in life and dignity in death,’ based on the Constitution of India’s Article 21. Help Age India is party to a lawsuit that calls on the Government of India to provide long-term care and adequate pensions for the millions of older people currently being deprived of their constitutional rights to life and dignity. Mr. Cherian told the workshop participants that advocacy also includes legal strategies where appropriate!
Although India has long-term care legislation, the health infrastructure to provide it is deficient in most districts, and pensions reach only a fraction of retirees, not 60 million poor older persons. During the discussion period, workshop participants highlighted the demographic shifts that have left homes without (unpaid, usually female, family) caregivers, now that younger generations are migrating to urban areas and overseas for work. The very limited health infrastructure at the village level, in rural areas where few doctors go, leaves millions of older Indians bedridden and with no one to ‘go the last mile’ with them. As Mr. Cherian observed, ‘the Kerala model of neighborhood and community care has been very successful, but that is because Kerala has health system infrastructure. Where that doesn’t exist, very little can be done.’
Shalini Arora, Advocacy Officer for Pallium India, was a workshop participant. She commented, ‘I am very excited that the growing need of care for elderly is being addressed through palliative care. The advocacy efforts that we are putting in for palliative care can benefit the demand for family health care. As discussed during the session, I look forward to palliative care advocacy workshops happening in India!!!’
So do we! IAHPC is prepared to go the last mile with our Indian colleagues and with partners all over the world to ensure that palliative care providers are ‘working to the highest standards of evidence based practice,’ in the words of workshop facilitator Dr. Fiona Rawlinson.
Stay tuned for next month’s report from the Vatican PAL-LIFE Conference and the regular meeting of the United Nations Office on Drugs and Crime Commission on Narcotic Drugs in Vienna. There will be several panels on improving access to internationally controlled essential medicines and I will be there tweeting for @IAHPC.
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