Dr Ednin Hamzah, new Chair of the Asia Pacific Hospice Palliative Care Network talks about his experiences in palliative care.
My formative medical years were spent in the North East of England where, disillusioned with hospital systems, I embraced general practice which included a sprinkling of palliative care patients. Yet, one day, a visit to Kuala Lumpur gave me a vision of running a community palliative care service in Malaysia.
Over the next few years my exploration of palliative care led to meeting regional palliative care pioneers such as Associate Prof. Cynthia Goh, Dr Rosalie Shaw and many others. There was also the vision of Dr Shigeaki Hinihara from Japan who envisaged a network linking individuals and services across the region, mutually assisting in developing palliative care. Thus the Asia Pacific Hospice Palliative Care Network (APHN) was formed and now in 2021, we celebrate our 20th anniversary. And there is much to celebrate.
My work with Hospis Malaysia intertwined with that of APHN. Over the years, the assistance we received in Malaysia from colleagues from Singapore, Australia, Hong Kong and New Zealand helped us greatly and similar experiences were being repeated across the region. Many of our pioneers learned and experienced palliative care in developed settings in the West but, whilst the principles and values of palliative care are similar, they needed to be infused with our local culture and values.
There is a strong sense of community and family in the region. Hence the concept of personal right and autonomy is less prominent here and there is a greater response when a collective or relational responsibility is used. Human rights is often seen as a political slogan but advocating for duty and responsibility may prevail.
The work done in Kerala, India by Dr Suresh Kumar and Dr M R Rajagopal has been recognised globally and there are many other excellent examples of palliative care in the region that perhaps have yet to be known to the rest of the world.
In recent years, APHN has partnered the Lien Foundation to launch the Lien Collaborative, a capacity building programme that initially embraced Myanmar, Bangladesh and Sri Lanka, and latterly India and Bhutan and perhaps beyond. These programmes follow the values that formed APHN with visiting faculty from better resourced services / countries being committed to supporting individuals and programmes for at least 3 years.
The Covid 19 pandemic has brought devastation to everyone. During the early months, Prof Cynthia Goh, hosted regular webinars that shared our challenges and solutions together. Our closed borders has certainly affected our physical meetings but our connections remain strong. Our current book project, To let the light in http://athousandcranes.org is a wonderful collection of poems from the region.
As I take over the helm of chairing the Asia Pacific Hospice Palliative Care Network, it is both an honour and a responsibility to weave the values that we have in the region to the practise of palliative care. Access to palliative care and the right to pain relief and essential medicines – especially opioids – remains an issue to many in the region. Governments are hearing about palliative care but implementation is needed. Ultimately it is about listening to the voice of those affected and requiring palliative care, advocate and acting for them.