Nobel winner wants to die in peace at home, wife says, as she urges Hong Kong to change culture on end-of-life care

Physicist Charles Kao Kuen, who has end-stage dementia, does not want to be kept alive in hospital when his time comes

PUBLISHED : Sunday, 10 July, 2016, 7:17pm
UPDATED : Monday, 11 July, 2016, 6:00pm

Professor Charles Kao Kuen, the 82-year-old Nobel Prize-winning physicist who suffers end-stage dementia, wants to die peacefully at home rather than in hospital when his final moment comes, his wife told the South China Morning Post.

Gwen Kao Wong May-wan said the decision was made two decades ago after the couple witnessed Kao’s father, who also had dementia, struggling on life support in hospitals for months before he died.

Instead, they preferred a warm death at home surrounded by family members and perhaps a happy farewell party for the loved ones to say goodbye, she said.

Charles Kao Kuen’s wife: we must banish stigma of Alzheimer’s

“Talking about death should not be a taboo, even though it is still the case in Chinese culture,” said the 81-year-old British-born Chinese.

“We hope we can spent our final moments at home, but I fear the current regulations in Hong Kong might make it too difficult.”

Kao, dubbed the “father of fibre optics” for his pioneering work in the field, was diagnosed with Alzheimer’s disease 14 years ago. He has long been unable to express or take care of himself and has no memory of most things in his life.

But the physicist still recognised the woman who has spent more than half of their 57 years of married life caring for her husband. He smiles innocently like a child when she catches his sight.

This month, Kao lost the ability to maintain his balance or walk unaided, and Gwen hired a second helper at their home in the New Territories to ease her burden.

After all these years, Gwen said she had already prepared for the worst for Kao “which will come sooner or later”. Her only wish was for him to be happy and free from suffering.

When Kao’s 90-year-old father was in hospital about 20 years ago, she said the doctor attached a forced-feeding tube after he refused to eat and drink. They witnessed how he suffered for six more months before he died.

“We felt very guilty about it. If we had a choice, we wanted to let him pass peacefully without the sufferings,” Gwen said. “But at that time, doctors did not know much about end-of-life care. Their minds were only focused on saving people’s lives.

Unlike other illnesses, it is difficult to explain to dementia patients why they are in a foreign and cold hospital
Gwen Kao Wong May-wan

“There should be a culture for Hong Kong doctors to help families better understand whether it is worth using extreme or forceful methods to save old or terminally ill patients.”

Shaken by the experience, the couple, then in their 60s, signed an advance directive in the United States – a legal document instructing medical staff to skip traumatic and unnecessary interventions such as cardiopulmonary resuscitation (CPR) and force-feeding when they reached an irreversible stage.

Gwen believed the document was applicable in Hong Kong, but she said they both wanted a home death.

“Unlike other illnesses, it is difficult to explain to dementia patients why they are in a foreign and cold hospital. They can feel restless and bad-tempered as they do not understand.

“Home deaths are actually very common in many countries, but not everyone can afford it in Hong Kong.”

End-of-life care in Hong Kong severely lacking, doctors warn

Former health minister Yeoh Eng-kiong agreed there were too many operational and legal barriers for elderly people who wanted to die outside a hospital – either at home or in a care centre
– as it required certification by a doctor who had seen the patient within two weeks.

Or the family would have to call police after the death, and the case may then be reported to the coroner.

Yeoh – the head of Chinese University’s school of public health and primary care who has been commissioned by the government to review the quality of health services for the elderly – said he would look into legal means to relax such barriers.

Ten years after the Law Reform Commission rejected a move to give statutory power to advance directives, stating that the concept was still too new to the community, Yeoh believed it was time to readdress public receptions of such documents.

Only 1,919 people signed the document in public hospitals between August 2012 and March this year, partly due to grey areas.

Yeoh suggested proper legislation on the document that allowed a person to spell out their decisions about end-of-life care in advance. The law could also clear up the issue of liability if medical staff followed the instructions of the document in the face of objections by relatives.

A spokesman for the Food and Health Bureau said greater community awareness and consensus was needed on advance directives before legislation was put in place.