Listen to #Hashtag Hong Kong every Sunday morning at 8.15
Focussing on issues affecting civil society, we'll hear from representatives of NGOs, associations, statutory bodies, and non-profit groups.
(Sundays 8.15am - 8.25am)
World Down Syndrome Day (WDSD) , 21 March, is a global awareness day which has been officially observed by the United Nations since 2012. The date for WDSD being the 21st day of the 3rd month, was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome. This extra genetic material causes the developmental changes and physical features of Down syndrome.
Down syndrome varies in severity among individuals, causing lifelong intellectual disability and developmental delays. It's the most common genetic chromosomal disorder and cause of learning disabilities in children. It also commonly causes other medical abnormalities, including heart and gastrointestinal disorders. Better understanding of Down syndrome and early interventions can greatly increase the quality of life for children and adults with this disorder and help them live fulfilling lives.
The Hong Kong Down Syndrome Association is committed to serving individuals with Down Syndrome, intellectual disabilities or other disabilities and their family members with integrated family support and vocational rehabilitation services. As an organization dedicated to serving people with Down syndrome and their families, we deeply understand that for expectant parents who are suspected of having a fetus with Down syndrome or parents who have just given birth to a newborn baby with Down syndrome, they will encounter a critical period full of hesitation, confusion and doubts. Through our Pre-natal & New Born Counselling & Support Service for Parents of Babies with Down Syndrome, we actively provide these parents with comprehensive information and appropriate emotional support.
Let me share a life story with you.
The parents contacted us after the birth of their daughter Esther in 2016. During the various pregnancy check-ups, they were told repeatedly that there were high risks of carrying a fetus with Down Syndrome. At first, the parents were shocked by the persistence from the medical professionals despite having communicated their decision to continue with the pregnancy. Esther’s parents were very positive and accepted the fact she would be born with special needs. They said, “She is a gift from God. Down Syndrome does not define who she is, she is a precious child first!”
As the parents were not familiar to the rehabilitation services in Hong Kong, our social worker shared lots of useful information with them. For example, the importance of Child assessment, the application procedures for social welfare and the importance of early intervention to newborn babies with Down Syndrome, etc. Esther was born premature and also confirmed having congenital heart defect soon after birth. She was admitted to PICU for some time in infancy. Our social worker had also provided counselling and psychological support services to them. Early intervention training was provided to enhance her development in muscle, cognition, language and social skills. They were deeply touched by the support and care from the association to the family still now.
Esther is nearly 7 years old now and is studying in a primary school since last September. She is sociable at school and is coping well with her primary school life. The parents shared that Down Syndrome does not define who the person is. Some people may find it difficult, but don’t forget that there is a community with a big heart that is willing to help, care and accept.
It’s deeply true that everyone has their strengths and weaknesses, and people with Down Syndrome need more acceptance. Individuals with Down Syndrome have the right to social resources, and also the responsibility to contribute to society. They are capable of working as long as employers give them the opportunity. If you are willing to accept and embrace people with Down Syndrome, they can also have a happy and meaningful life just like you and me!
Do you want to get involve to raise the awareness on Down Syndrome? It couldn’t be easier! As I mention in the beginning, most people with Down Syndrome carry an extra one at their 21st pair of chromosomes. The shape of socks is like a chromosome. This condition, then is just like a pair of colorful mismatched socks. The odd pair of socks may be a different pattern or color but can still be worn together and form a colorful picture! On the coming 21 March, the World Down Syndrome Day, all you need to do is to wear mismatched socks or most colourful socks that are going to get noticed. To represent the beauty of diversity, possibility, inclusion and a new perspective of seeing things on this special day, and also to raise the public concern to people with Down Syndrome together!
May we live in a society without prejudice, where everyone can enjoy equality, love
I’d like to dedicate this song to the listener and all our members...“This is Me…”
I am Elane Siu, currently a Home Care Nurse at the Jockey Club Home for Hospice in Shatin. As someone who has worked in geriatric and palliative care for over 20 years, I have noticed an overall shift in recent years. In the past, it was widely accepted that the hospital was the final stop for the terminally ill in Hong Kong. Interestingly, since the start of the pandemic, I have had more and more people ask me the same question - “Is it possible to die at home?”
Dying at home allows terminally ill patients to spend their final days in a familiar environment, surrounded by the warmth and love of their family. Those who choose to pass away at home would need to make the necessary arrangements with their own doctor in advance. Under Hong Kong law, any terminal ill patient who dies at home must be attended to by a Hong Kong registered doctor within 14 days before his/her death. Therefore, our visiting doctor would reassess the illness condition of the patient once every two weeks. To prepare for end-of-life care at home, the patient’s family members or caregivers would receive support on caring techniques and recognizing symptoms in the dying stage. Once the patient passes away, an emergency call must be placed to the medical doctor for death certification.
Recently, public awareness on dying at home has been increasing in Hong Kong. Since the start of the pandemic, public hospitals have restricted visitation, leaving many terminally ill patients isolated from their families. This in turn has brought more public attention to end of life arrangements than ever before.
One such case was Grandma Cheung, a terminally ill liver cancer patient who spent three months in a public hospital during the early days of the pandemic. Unable to visit his wife, Grandpa Cheung began to explore other options. After learning about our home care service, he eventually decided to take Grandma Cheung home where our nurses continued to provide symptom management as well as carer training to the family. A few days later, unfortunately, Grandma Cheung passed away peacefully at home with her husband and loved ones at her side. Our doctor conducted a follow up visit to complete death certification and make the necessary arrangements.
Unlike other developed parts of the world, palliative care in Hong Kong is still relatively underrecognized by comparison. In 2016, studies conducted by HKU, CUHK and The Federation of Medical Societies of Hong Kong indicated that 30% of the surveyed population in Hong Kong preferred to remain at home for end-of-life care. On the other hand, it has been estimated that home death cases accounted for only 3% of the total deaths in Hong Kong, far below 40% in Taiwan and even 27% in Singapore respectively.
To make dying at home possible, a number of environmental and psychological conditions would have to be met. Firstly, there must be sufficient living space to accommodate the medical equipment and bed of the dying patient. Secondly, family members or caregivers must be able to provide palliative support and have the emotional capacity to discuss life and death issues with the patient.
Hong Kong presents some major obstacles when it comes to dying at home. As I have said before, the city’s cramped living space is usually not suitable for home death and preclude many patients as a result. Also, the general lack of education and awareness of end of life arrangements, particularly among the grassroots population, mean that most people may not even realize that home death is a real option. Finally, there is significant cultural stigma towards dying at home with some believing that it would cause their property to become haunted and subsequently lose its value. And these obstacles taken together, make it difficult for our frontline clinical staff to promote the development of home death service.
The implementation of home death service would help address one of the most pressing issues in Hong Kong – population aging. Increasing public acceptance and utilization of home death would not only provide the terminally ill with an alternative, more comfortable way to depart this world, but also reduce the pressure on public hospitals. It is without a doubt a win-win situation but one that can only be achieved with policy support. We hope the government will consider enacting a long-term plan that would allocate additional resources to palliative care services, particularly in home care, and strengthen public education and interorganizational collaboration on promoting home death.