Dying at home: how Hong Kong’s terminally ill can find peace and comfort together with their loved ones

To see his mother surrounded by loved ones during her last days after a long battle with liver cancer was most heartening for Samuel Mak Ka-yan. “My sister moved in with my parents and I would bring my children home for dinner regularly. Their place would always be full of joy and lively chatter,” he said. After her final cancer treatment, his mother spent her last 15 months at home under her children’s care before she died peacefully in her sleep in September 2021, aged 86. This was despite doctors’ expectations that she had at most six months to live. During that time, the whole family would have conversations until late at night, sometimes over a glass of wine. They would talk about their childhood and ask about things they always wanted to know. “Even though we knew her life was in the countdown, those were still happy times for us,” says Mak, 56. Hongkongers fear cancer the most – but they’re also confused by it The decision to stop cancer treatment for their mother was the hardest part, said Mak. The next step was to ensure she spent her last days in comfort. Arranging for her to die at home was a “no-brainer” for him and his siblings. Home death is a form of end-of-life arrangement that allows patients suffering from an irreversible illness, such as late-stage cancer or organ failure, to spend their last days at home. Given unfamiliar hospital environments, it is often an easy choice for those terminally ill patients who know they will be able to live out their days surrounded by loved ones, and more people in Hong Kong are making it. As the concept of home death gains acceptance in Hong Kong, where death is still a largely taboo subject, some companies are trying to streamline the process. Demand for home death services tripled during the height of the fifth wave of the Covid-19 pandemic this March, said David Wong Cheuk-hin, chief operating officer of DoctorNow Home, a company that began offering house calls and home-death arrangements in 2019. When family members were subjected to strict social distancing measures and had to produce a negative PCR test to visit loved ones in hospital, the home death alternative held appeal. Since the beginning of this year, the company has managed over 200 home death cases. “Patients will feel happier because they are in a familiar environment, not surrounded by strangers in a hospital. Most late-stage patients are already in pain, so comfort is most important,” said Wong. “Most districts only have one hospital which provides palliative care. For the caretakers, there is less stress, as they don’t have to spend time commuting to the hospital just for one hour of visitation. They can care for their loved ones around the clock.” Proposed changes to law promise more end-of-life treatment choices With an average of 85 years, Hong Kong has one of the highest life expectancies in the world. The lack of a comprehensive palliative care system, though, has placed Hong Kong at number 22 on the world’s Quality of Death Index published by The Economist Intelligence Unit. Taiwan ranked 6th. According to the Hospital Authority, nearly 97 per cent of all deaths in 2017 took place in hospitals, while the rest were in hospices, homes for the elderly or at home. This is compared to a 22 per cent home death rate in Singapore and 40 per cent in Taiwan. A 2017 study by the Chinese University of Hong Kong (CUHK) showed 31.2 per cent of Hongkongers would choose to die at home. Associate professor Roger Chung Yat-nork, who is part of the CUHK research team, said advance directives and dying-in-place initiatives are not yet legally sanctioned. In 2019, the then Food and Health Bureau consulted the public on these topics but little progress has been made, he said. Advance directives, or a living will, allow patients to specify if they do not want treatment to prolong their life when they are dying. Current advance directive guidelines issued by the Hospital Authority are not legally binding. Potential conflict may arise with the Fire Services Ordinance, which binds emergency rescue personnel to their duty to resuscitate, even when a patient has indicated they do not want this. Doctors usually provide an estimated life expectancy for terminally ill patients, which makes it easier for them to make end-of-life arrangements. Patients must express the desire to leave the hospital and return home, and caretakers must agree. A team of specialists will first visit the patient’s home to evaluate whether the home death is feasible, says Grace Yeung Mei-yung, the executive director of non-profit funeral services provider Forget Thee Not. This includes “whether air conditioning is strong enough to preserve their body for hours when they pass”, said Yeung. They learn about the caretakers’ plans for the patient’s care and create a WhatsApp group with the family and the patient’s doctor for easy communication. While the family saves in terms of hospital bills, a home death can cost more than in hospital. Forget Thee Not’s home visits range from HK$800 (US$100) to HK$2,000; paperwork costs about HK$10,000. Other costs involved are transport and storage of the body at a funeral home mortuary. Yeung estimates it costs about HK$30,000 for a patient who spends one month at home, plus two weeks of storage for their corpse in a mortuary. “For many families, the difference in cost is not the biggest concern. After all, it is a matter of life and death. The important thing is both the family and patient receive comfort,” said Yeung. Chung notes that not every Hongkonger has the social and financial resources to die at home. To normalise conversations about death planning and introduce this option to more Hongkongers, funeral services director Chen Pui-hing holds sharing sessions at elderly-care homes and with social workers. Hong Kong funeral homes ‘fully booked until mid-April’ as Covid toll rises He hopes to dispel any superstitions or taboos that surround dying at home, such as the fear that it would negatively affect property prices. “Patients pass away peacefully and comfortably at home surrounded by their loved ones. This is contrary to the common understanding of ‘haunted houses’ where murders or suicides take place [which does affect property prices],” he said. Personal experience during the height of the pandemic’s fifth wave in Hong Kong made him realise how important it is to say goodbye properly to your loved ones, and how advance planning can help families mitigate any remorse. “Some people didn’t even get to say their goodbyes properly or had to see their loved ones for the last time through the ward window or through video calls because of Covid restrictions. That was heartbreaking,” said the 29-year-old. For Samuel Mak, the end-of-life arrangement ensured his mother enjoyed happy moments during her final days and eased the grieving process for his family. Since they had gone through the procedure in detail in advance and had time to prepare, the family was not as distraught when she died as they thought they would be. “Sure, we were sad, but we didn’t break down. It got to the point where we embraced the fact that she was going to leave us,” said Mak. End-of-life planning may be easier than we thought “Hongkongers love to plan. We have career planning, wealth planning and retirement planning, but we don’t talk about end-of-life planning,” he said of the stigma surrounding death. “We should plan this for ourselves and our families so we will not have any regrets.” Like what you read? Follow SCMP Lifestyle on Facebook, Twitter and Instagram. You can also sign up for our eNewsletter here.