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Be the master of your own mortality during final days
Earlier, there was a family tragedy in Yiu Tung Estate, Shau Kei Wan. An 80-year-old man could not tolerate his wife's behavior following a stroke and strangled her. The media cited the information from the Social Welfare Department which indicated the female deceased had been allocated a subsidized place in a day-care center but she declined.
The Economist and Kaiser Family Foundation, a US think tank, carried out a study in an effort to find out where people want to spend the last days of their lives. The survey interviewed more than 4,000 people from Japan, the United States, Brazil and Italy. Despite different backgrounds and culture, more than half the respondents wanted to spend their last days at home.
What about Hong Kong? The media quoted 70-year-old Dr Yeoh Eng-kiong, former secretary for health, welfare and food: “When I pass away, I want to be at home... you know how crowded a hospital is...” We all share the same thoughts.
However, to pass away at home in Hong Kong actually poses many problems. Professor Joseph Lee Kok-long, member of the Legislative Council representing the health-service sector, pointed out that less than 3 percent of the patients participated in the Home End-of-Life Care Programme; the original idea had been to enable elderly patients suffering from chronic diseases to choose to stay at home and enjoy a peaceful time during the last days of their lives. The reason is that many people“worried about handling death themselves”if death had not occurred in a hospital. In addition, people may worry that the spirit of the dead would attach to the home, turning the property into a“haunted house”and thus affecting the price of the property.
On the other hand, with an aging population, chronic diseases such as dementia are becoming increasingly common in Hong Kong. According to government information, Hong Kong's major causes of death, such as cerebrovascular disease and chronic lower respiratory disease, declined from 2001 to last year, whereas dementia increased from 2.6 per 100,000 people to almost five times that level today. Dementia could last for 10 to 15 years and would therefore put a heavy burden on caregivers.
In the US, as many as one-quarter of people die at home because of the huge cost of hospitalization. According to Medicare, the US government's medical insurance, US citizens spent a quarter of their total medical expenses in their final year. However, local research also said that the annual opportunity cost of the US home caregivers was as high as $522
billion. One reason is that a lot of people gave up their work to take care of the patient at home. The second reason is taking care of the patient often extends to day and night. In Hong Kong, according to a survey by the Department of Social Science of the University of Hong Kong and the Hong Kong Council of Social Service, within the final six months before passing away, elderly people on average are admitted to hospital three times for a cumulative 28 days. You can imagine how hectic the caregivers can be. As such, they are prone to suffer from caregiver syndrome.
A Stanford University study found caregivers suffer from great mental stress, irritability, guilt, and so on — they are more likely to have depression and suffer from illness. As a result, they may die earlier than the patient — this is the case for 4 percent of dementia caregivers.
In the 2015 Quality of Death Index published by The Economist, Hong Kong ranked 22nd among 80 countries and regions in the world. It is not proportional to our high per capita income — which is four times higher than the global average. Taiwan ranked sixth globally and first in Asia in the Index; Hong Kong needs to catch up, whether in regulations, hospice care, advance directives or life and death education.
On the other hand, information technology may help —telehealth can reduce the fatigue of both patients and caregivers, big data analysis helps predict development of disease. A sensor network at home can safeguard the patient — in case no motion is detected in the bathroom or kitchen for say half an hour, a signal would be sent out to alert the relevant parties. Moreover, a partnership among the public (the government), the private (corporations and civic associations) and the people (friends and relatives) or “4P” could be formed to help improve the living quality of patients and caregivers.
When facing our own mortality, everyone is a novice, so we need to take extra care of it. We came to this world surrounded by love, we want to pass away with dignity and peace. This is the essence of a people-oriented smart city.
Dr. Winnie Tang
Honorary Professor, Department of Computer Science, The University of Hong Kong