New Hong Kong group set up to push for end-of-life care for children

Concern group’s founder said such palliative care often overlooked for kids, and urged public hospitals in the city to resolve grey areas on this issue

PUBLISHED : Monday, 10 October, 2016, 10:04am
UPDATED : Tuesday, 11 October, 2016, 12:10pm

A group of medical professionals have formed a new concern group to advocate end-of-life care for around 1,000 children in Hong Kong who suffer terminal illnesses such as cancer or rare diseases every year.

Such services, which aim at relieving patients’ pain and symptoms are often overlooked for children in the city, Chinese University’s paediatric professor Li Chi-kong said, adding that even similar ones for adults are lacking.

Watch: palliative care for terminally ill patients

Li, who founded the group along with about 20 doctors and nurses, urged public hospitals to begin resolving current grey areas where it remains unclear which patients should receive such services.

In the long run, he hopes that paediatric palliative care could become a new specialty in the medical system so that there will be doctors who are professionally trained to support the needs of these children.

“End-of-life care is needed not only for adults, but also for children patients,” he said. “The development of such services in Hong Kong is very slow, mostly due to the small number of patients.”

Li announced the formation of the new group ahead of the international children’s palliative care day this Friday. Local medics will take part in the event for the first time and urge members of the public to wear a hat to raise awareness of the campaign.

“Although doctors have always been providing relief services to children who need it, the service is very fragmented in Hong Kong and there are certain grey areas,” Li said.

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For example, it is unclear what type of patients are in need of the services. Currently, public hospitals provide palliative care to around 180 children who suffer from cancer every year – of this number, about 40 die.

But Li said that such care is also needed for other patients. He estimated that around 1,000 children who suffer conditions such as brain damage, metabolism problems, organ failures or muscular dystrophy, as well as cancer, should be given the service.

The palliative care given to children is also different compared to that received by adults or elderly patients, so doctors should be specially trained to handle youngsters’ cases.

“There could be a big difference in age among children, as it could range from newborns to teenagers ... Needs and intelligence of children vary,” Molin Lin Kwok-yin, professional services manager in palliative care from the Children’s Cancer Foundation, said.

“Small children would not be able to tell where they are aching and could only cry, so we have to learn how to discover their reasons for discomfort,” Li said, adding that the prescription of painkillers would also be different from that given to adults.

Counselling also has to be given to families of patients, who might go through emotional turmoil.

“Many parents would ask why only their children have to suffer, and why the diseases can’t be cured,” Lin said.

The foundation is the only non-governmental organisation in the city that works with five public hospitals to provide such services to children and young people, a more complex process that that for adults or the elderly.

Specific care teams have been established in the Prince of Wales Hospital and Tuen Mun Hospital to provide support to chronically ill children. Team members, including hospital doctors and foundation nurses, provide extra palliative care outside of their regular duty hours.

A spokeswoman from the Hospital Authority said that a certain degree of palliative care is being offered to children in every paediatric department. This is part of a strategic service framework on palliative care which is currently under review by the authority.

Many parents would ask why only their children have to suffer, and why the diseases can’t be cured
Molin Lin Kwok-yin, Children’s Cancer Foundation

For adult patients who have terminal illnesses, palliative care can help them in a lot of ways.

Peace Chan Man-hing, 28, a six-time cancer sufferer who was first diagnosed with bone cancer when she was 12, said the conditions were too big for her to handle by herself.

The cancer fighter was also diagnosed with brain cancer at 23 and breast cancer at 27, and underwent threerecurrences in between. Her right leg was also amputated because of tumours at her knee when she was 19.

While Chan had not suffered too much physical pain, tensions with her mother, who did not manage to spend much time with her because of work gave her extra stress.

A palliative care nurse from thefoundation has been providing support to Chan and her family since 2011.

“If I feel unwell after taking medication, I would consult her immediately, or talk to her when I’m feeling down,” Chan said.

But she still has fears deep inside that remain unsolved: medical care for her last days and the feeling of death.

“Would no tube-feeding be more suffering than tube-feeding?” she said. “Lying in a mortuary must feel so cold and lonely.”