As the trends of population growth and aging further the need to expand end of life care globally, it is important to understand that conceptions of appropriate end of life care vary cross-culturally. This global dimension is at the forefront of The End of Life Studies Group’s research. On the 15th of May, the Group hosted a whole day symposium titled ‘No Place Like Home: Past, Present and Future of End-of-Life Care in Hong Kong and Singapore’.
During the event, economic and political issues surrounding care provision and promotion in the region were addressed. We also discussed how end of life care practitioners and activists negotiate concepts of personhood and kinship, which are especially important to achieving the culturally sanctioned ‘good death’ in Hong Kong and Singapore. The division of morning and afternoon sessions symbolically represented ‘problems’ and ‘solutions’ for end of life care in the region. Having a whole day dedicated to deepening knowledge about end of life issues midway around the world was truly an exceptional event in the Dumfries and Galloway context.
Dr. Harry Wu, based at Hong Kong University, but gracing Dumfries campus with regular visits, brought together a diverse group of speakers from various institutions in the United Kingdom. He presented a history of the care for the dying in Hong Kong and Singapore among Coastal Chinese people. Because of belief in death pollution, a death at home was undesirable, thus, designated spaces, called Death Houses were in operation. Death Houses provided very basic lodgings where people would spend their last days of life. When modern medicine was introduced in Hong Kong and Singapore in the late 19th century alongside colonialism, traditional end of life care was replaced by medicalized and institutionalized practice. Taking into account the missionary view, we can see a linear history from ‘backwardness’ to ‘advancement’ being formed as a narrative – Death Houses seen as backward and dirty, images of which acted as morbid curiosities in Western media. However, when hospice was introduced into Hong Kong it was immediately associated with the death houses. In Singapore, similar things happened and there was significant mistrust against Christian services. This illustrates the pushing and pulling forces regarding the institutionalization of end of life care in Hong Kong and Singapore.
Miss Celia Yua recent graduate of Cambridge University discussed her Master’s research and thesis, investigating the first family-centered hospice centre, Jockey Club Home for Hospice (JCHH). JCHH places strong emphasis on the theme of home and shifts the focus from the dying patient to the family and prioritising their wellbeing. Celia’s research as a member of administrative staff in JCHH shows that this puts nurses into the difficult position of attempting to negotiate the dichotomy between care and money among Hong Kong residents. When confronted with the ‘money-is-evil’ and ‘money corrupts love’ discourses, carers respond using the language of gifting, which transcends the nature of care work and downplays the monetary transaction. They provide intense care to downplay the commodification of hospice care, however that means that the carers constantly are overworked and feel like they cannot fulfil their promise or live up to a saint like image in expense of the sustainability of the JCHH model. Celia concludes that this is not entirely beneficial to JCHH’s long term development.
Dr. How-Wee Ng from the University of Hull brought a different perspective through his theatre and media studies background. His interest lies in how sensitive topics are mediated. In his talk, he focused on how an ongoing community arts project ‘Both Sides Now’ attempts to engage various audiences in Singapore in a discourse around end-of-life issues. Some examples included puppet theatre and interactive art installations in public spaces. He also considered the ethics of such displays in hospitals, traditionally seen as places of hope and recovery. He raises question about who is excluded from these types of conversations and representations of end-of-life matters, starting from those unable to engage in optimistic or neutral language, ending with those, who are not able to access resources as they are not available in their language. He concluded that in Singapore, normalising the discourse on death in public spaces is driven by interdisciplinary collaboration among arts, academic and healthcare workers. This research-based artistic practice requires more research on the extent to which Both Sides Now has changed attitudes of participants towards death.
In the last session of the day, Dr. Sui Ting-Kong from Durham University, presented findings from a multiphasic study, that looked at the ways by which social care practitioners bring psychological comfort and sustain the sense of self of the dying older adults livings in residential care homes in Hong Kong. Her proposed model puts emphasis on personhood, as opposed to patienthood and helps address the challenge of bringing a homelike and dignity promoting environment to people who are experiencing end of life.
The event attracted attendees from various backgrounds – medical practitioners, NHS workers, social workers and members of the local community. Closing the event, Professor David Clark quoted Dame Cicely Saunders in suggesting that we had a day with our ‘head in the clouds and feet on the ground’. Indeed, hosting this thematically unusual event stimulated new ideas and collaborations.
Solveiga Zibaite, Doctoral Student, Glasgow End of Life Studies Group