What are the barriers to effective supportive and end of life care for Chinese people in the UK and the USA and what can be done to overcome them?
The study used a pragmatic and modified case study technique (Stake 1995) which aims the provision of supportive and palliative care to a sizeable population of Chinese people living in two areas of the world, London and San Francisco. At total of seven services were visited (two in the UK and five in the USA) over a three-week period and twenty-two members of staff were interviewed either individually or in a group using a structured informal interview schedule. The interviews were analysed for consistent themes (which were developed from a literature review) and the results were member checked with a group of staff in San Francisco for their trustworthiness.
A number of themes or areas of challenges in providing palliative and supportive care were identified which have direct application to the care services that are offered in the North West of the UK. The main challenges were: superstition around death and dying, the role of luck and fate, the lack of finance, reluctance to talk about death and dying, the structure of the family (particularly the one child family policy), a lack of knowledge and understanding of palliative and supportive care, filial piety and doing what is best for the parent (including life extending treatments), late presentation at care services due to self-management and self-medication and the wish for families not to inform their parents of their diagnosis in order to avoid distress.
The ways to overcome these challenges offered by experienced services and staff were: engaging the local community in a dialogue about end of life issues, using community leaders and community organisations to overcome the problems associated with end of life care, the use of multi-channel information and education including peer education, robust and sustained family involvement, by the presentation of end of life care as an active process, training healthcare professionals about the uniqueness of the Chinese community, by not underestimating the role of superstition and culture and tackling issues related to finances.
The provision of culturally sensitive and competent supportive and end of life care for Chinese people is complicated and challenging. The increasing numbers of Chinese people in the UK reaching older age and facing life limiting illnesses means that services will have to adapt to providing care for a group of people who don’t fit the Western norm for supportive and palliative care. Many factors such as when to approach the discussion about supportive and palliative care, who to discuss it with, how to discuss and frame a conversation, how to respect cultural and religious beliefs means that there has to be shift in the mind-set of healthcare professionals who are used to well established and well described algorithms for care provision. Chinese older people themselves have suggested they wish to talk about and discuss end of life care issues and whilst this may be difficult, they are receptive to culturally sensitive messages.