Advancements in modern medicine has rapidly raised Hong Kong's standards of healthcare. Today, the medicalised society focuses heavily on the curative elements of care, leading the primary cause of death to be degenerative diseases. But when the physical body begins to reach its end, is medical care the only type of care we need? I had the opportunity to discuss End-of-Life (EOL) care and communicating about the end of life in an interview with Dr Amy Chow, Director of the Jockey Club End-of-Life Community Care Project and Associate Director of Sau Po Centre of Ageing.
Despite Hong Kong being a relatively Westernised society, the approach to care must be culturally specific to the Chinese population. Chow commented that older generations preferred to be self-reliant and more easily accepted care from their families than professionals, and explains that the primary means of engaging with the elderly is actually through community centres where they can relax. The personal and humanistic side of care must be delicately addressed through communication, including educating the general public on death, which she found most effective through modes of entertainment:
"For Chinese, they don't like to talk about themselves, but they like to talk about others. If there is a character in a movie, in a drama, then they project their emotions onto the character. So, when they talk, they are not talking about themselves, they're talking about the character so it's easier for them to speak."
This inadvertence to talk about themselves could reflect a collectivist ideology, a desire to not burden others with their thoughts through independence:
"For those who are less educated or financially not so viable, sometimes they also want to be independent from their children by sending themselves to nursing homes or other places. The key point is they don't want to be a burden to others, so this concept – no matter whether they are rich or poor – is quite strong in a lot of the Chinese older adults."
Additionally, a common trend of the younger generations often not being in Hong Kong for education or careers allow the elderly to become quite independent, whilst weakening the elderly role as caretakers in the family. Dining culture and food now play an even greater symbolic role as a point of gathering and allowing the elderly to partake in the family even if they themselves cannot eat solid foods, providing a sense of time. But to what extent does institutionalisation represent independence?
Rather than deinstitutionalisation, Chow promotes differentiation of those who are not yet in need and those who are in need of sophisticated institutional care, as compared to all who require care being institutionalised in some form. She predicts that with growth of telemedicine through the COVID-19 pandemic, patients can come to realise that the hospital is a tertiary healthcare provider and otherwise can be treated within the community rather than rushing to the hospital in any problem, rebalancing the scales of need versus choice. With EOL care rooms mandatory in new care homes since 2017, the government is beginning to create pathways for last stages of life to occur within the community if desired, within care institutions. Designers and project managers personally interviewed saw EOL care rooms as a good addition which could be designed as the best room in the facility, but the reality for many care homes is that they do not have the means to carry out this approach:
"Because they don't have extra room, they use the isolation rooms and maybe another room, or maybe they just renovate the storeroom for that purpose. So it is not very desirable in a way but as I heard from the user side, I think some patients find that room a little bit frightening because whenever anyone is sent into that room, sooner or later they'll die. Some will feel it's very uncomfortable but from the family’s perspective I've also heard that they find this very helpful because they can stay in that room together with the patient with more privacy, in particular for those who stay in nursing homes."
There are still legal concerns around passing away in care homes for protection in a place where money is exchanged.
However, Chow notes many NGOs that are funded by the government now operate care homes, so the level of control is good enough to relax the law. Other than providing for the physical needs of elderly and patients, Chow emphasised the need to provide space for spiritual needs - namely through privacy, light and nature, creating the connection that life and death is a natural process.
Through her research, Chow found that the middle aged population was actually most concerned around discussing death rather than the older or younger generations. Upon asking whether it was perhaps more vital to engage the middle aged group in allowing them to open up more about the end of life, Chow agreed and explained that in her work she is working on including them in advance care planning for their elderly family. She also has plans to bring the topic into high schools and encouraging students to extend the conversation with their middle aged parents at home through playing cards.
"Our hunch is maybe the middle aged... they are engaged in the working phase, they are fighting for their life, they are looking for a better life in future. So, they don't want to disturb themselves."
Although not considered medical healthcare in nature, Chow explains that end-of-life care is something that international organisations consider a human right. In such sense it is already recognised that managing symptoms and mental well-being is just as significant as curative healthcare, to fulfill other needs that require care:
"I think care is the connection with the person. It is trying to connect with a person and seeing what kind of needs they have and to help that persons’ needs be fulfilled. It is not restricted to the physical side but also psychological side, social side and spiritual side."