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.