For Hong Kong’s elderly to die with dignity, much better end-of-life care is needed

This article appeared originally in the South China Morning Post on 12 January, 2020.
Authors: Pamela Tin, Lead Researcher of Health Care and Aging, and Queenie Li, Assistant Researcher at Our Hong Kong Foundation

Longevity is a blessing if there is quality of life and dignity. Hongkongers enjoy an average life expectancy of 85 years, the highest in the world according to the World Bank, better than in Japan and Sweden. But, with the proportion of chronic diseases rising by age group, how Hong Kong achieves active ageing and dignified death is particularly pertinent.

The World Health Organisation defines palliative care as the relief from pain and the care and support of patients and their families facing life-threatening illnesses, and which includes psychological, social and spiritual support. End-of-life care integrates palliative care and social welfare services within the last years of life.

Both concepts prioritise the quality of life for patients and their families, putting them in conflict with Hong Kong’s treatment-centric care model. This ideological mismatch, coupled with severe resource constraints in our public health care system and fragmented medical-social services, impede the development of palliative and end-of-life care services in Hong Kong. There is much to be done to improve end-of-life care, and to banish headlines of suicides by chronic patients and carers due to stress and inadequate support.

While the government’s latest public consultation on advance directives and dying-in-place is a good step forwards, it is woefully inadequate given Hong Kong’s overburdened public health care system, and there is an urgent need to explore practical service models that better meet policy ideals.

Our Hong Kong Foundation therefore commissioned the Hong Kong Institute of Asia-Pacific Studies at the Chinese University of Hong Kong to conduct a poll on the public’s knowledge and experience of end-of-life care in community settings.

The results showed that most citizens have a poor knowledge of end-of-life care. Over half have little confidence in handling such issues, and only one in five is aware of related services in community settings. Most are unfamiliar with what end-of-life care involves, except for funeral assistance.

Citizens lack awareness of the vast service scope covering physical, mental, social and spiritual support. There is thus an urgent need to enhance public education and the promotion of related services.

Nearly 90 per cent of respondents wish to remain in their community in their last years. In seeking non-medical support when facing an end-of-life situation, 40.8 per cent turn to community health care professionals, more than the 39.6 per cent who opt for hospital-based medical professionals.

Pointing to the vital role played by the community in end-of-life support, however, the study results reveal a discrepancy between the preferred and actual channels of support – particularly among social workers, religious personnel and even family members – which do not provide sufficient support. The findings point to the significance and necessity of building a supportive community as part of our evolving primary-care system.

Additionally, respondents expressed many needs in end-of-life care, including a comfortable environment, professional guidelines and regular community health care services. This has important implications in planning the expansion of related services.

The poll results point to systemic fissures: the information gap between citizens and community services, discrepancies between citizens’ needs and actual service performance, and the disintegration between public hospital services and community support. Sound policies should be put in place to address these gaps.

Research has repeatedly demonstrated the need, and the opportunities available, to shift Hong Kong’s reliance on public hospital care to community-based primary health care. Expanding the provision of end-of-life care would also lift the burden on public hospitals, improving the quality and efficiency of our health services.

The government’s legislative proposal on end-of-life care is only the first step in a long journey. Hong Kong needs a holistic policy framework and a detailed service model. The government’s dedication to bridge the health and social care sectors will be important as we work towards an affordable end-of-life care system that will allow everyone to spend their last years in dignity – after a lifetime’s contribution to Hong Kong.