The city lacked a comprehensive and standardised end-of-life care framework, Ip said.
“End-of-life care also includes social, mental and spiritual aspects. These aspects cannot be achieved if we only rely on the directive,” he said.
“In the whole process of end-of-life care, the advance directive only emerges at the very end of the timeline, right before death.”
Ip said Hospital Authority data showed the usage rate of medical services increased six months before patients died, with the rise spiking in the final two months.
While 90 per cent of patients in Hong Kong died in hospitals, a foundation survey in 2019 showed that 90 per cent of respondents wished to spend their final moments in the community with sufficient support, he said.
That meant that there was a huge demand for end-of-life planning and room for reducing the burden on the healthcare system, Ip added.
Foundation president Jane Lee Ching-yee said multidisciplinary and comprehensive services supporting as well as educating terminally ill patients and their family members were crucial.
“We have seen many unfortunate scenarios where terminally ill patients lacked communication with their family members and did not clearly express their wishes,” she said.
“As a result, patients were not able to receive the services. Family members might also bear a great deal of stress and argue frequently with each other, which is a lose-lose situation.”
Dicky Chow Ka-chun, a senior researcher at the foundation, said the government should develop a standardised framework for “advance care planning” for all residents to facilitate the signing of advance directives.
He said advance care planning was a communication process that could be conducted at any stage of life.
Individuals would need to provide information about their values, beliefs and preferences to create tailored and holistic plans for their medical, personal and social needs, Chow said.
“For example, the Patient Right to Autonomy Act in Taiwan requires a discussion on advance care planning before signing any advance directives,” he said.
“Its major purpose is to help family members understand the person’s values and preferences to avoid further conflicts, and to facilitate signing the legal documents.”
Chow said Singapore also launched a programme to encourage its citizens to participate in advance care planning.
With services available at more than 60 health and social care institutions, the ease of access and inclusion of end-of-life care planning into daily lives could help reduce the cultural taboo, he said.
Chow said some organisations in Hong Kong also provide advance care planning, but their service scopes were very different.
He said Hong Kong needed a standardised advance care planning framework that had a consistent scope, clear service target, and qualifications required for service providers.
Chow said the government should also establish a centralised platform that bridged the gaps between healthcare and social sectors to match patients with the right end-of-life services.
“Carers may need to call every non-government organisation to ask about their services. This requires a lot of effort and time,” he said.
He said the Jockey Club End-of-Life Community Care Project served as a great example as it collaborated with the government, hospitals and organisations in the community to take care of patients’ physical, mental and spiritual needs.
Hong Kong could also study Singapore’s Agency for Integrated Care that was set up in 2009 to coordinate the delivery of aged care services by linking up medical and social support, he said.
Chow also suggested that the government promote life and death education in primary and secondary schools to improve understanding of end-of-life care, as well as provide advanced life planning training for community and healthcare professionals.