After struggling with prostate cancer for 13 years, 75-year-old Lao Xu cannot any longer even move himself on his bed at home - the cancer has metastasized to the bones of his legs.
He was also tortured day and night by severe pain and could not sleep, which was greatly affecting his temper and also his family life.
"We could do nothing when seeing my father moaning with pain all day and all night," said Xu's daughter.
Xu and his family members knew clearly that his cancer had developed into its terminal stage and no medical measures could save his life. "All we hoped was to let him spend the last days free from pain," said Xu's daughter.
But it was not easy to ask a doctor to make a home visit to a terminally ill patient because medicines used to relieve pain - such as morphine - are strictly controlled.
However, they were to find out that help was, in fact, only a phone call away. When they made the call to Xinhua Hospice, free and effective pain-relief medicines were sent home and Xu can now enjoy a good sleep.
A couple of days later, doctor Shen Wei and nurse Sun Meilai of the Xinhua Hospice came home to give medical guidance. All this was free of charge.
A local doctor surnamed Wang had two different experiences in caring for family members dying from cancer - her mother and mother-in-law.
"Years ago, I witnessed how much my mother suffered during her last days. In comparison, my mother-in-law is lucky because she will not experience pain because of the help from the hospice."
Peaceful end
Since it was set up on June 22, 2001, Shanghai's Xinhua Hospice has cared for 849 patients similar to Xu. The hospice is the only one of its kind in the city and provides medical treatment for terminal cancer patients. It is jointly funded by the Li Ka-shing Foundation and the Shanghai Xinhua Hospital.
After watching the terrible last days endured by his father, a victim of lung cancer, the famous Hong Kong businessman set up a 100 million yuan (US$12 million) foundation to help terminal cancer patients who could not afford the necessary medical treatment. His foundation gives 1 million yuan to each hospice and 22 are now operating across mainland China.
Hospices used to be places of shelter for travellers and were usually maintained by religious orders. Since the 1960s, they have become homes for destitute sick patients, especially the terminally ill.
Hospices differ from the practice of euthanasia, which is to end a patients' life through medical means, by allowing the patient to have a peaceful, natural death.
"In China, the term is still very new for the concept has not been widely accepted that terminal patients need special care in their last days," said Chen Qiang, a professor at Xinhua Hospice.
Many terminal cancer patients in China spend their last two or three months at home after all medical treatment has been tried and failed or when financial difficulties force an end to treatment or because of limited medical resources.
"Although we can't save these patients' lives, we can improve their quality of life by easing their pain and also giving them psychological care and love," said Chen.
As well as Chen, the hospice has another six on the team including one social worker. The hospice provides medical services for cancer patients in Shanghai and also in nearby cities such as Wuxi in Jiangsu Province.
The terminal stage of cancer is always accompanied by great pain so patients need a lot of anaesthetic such as morphine. "We give patients various medicines under 'three-ladder analgesic treatment' and according to their specific situation," said Chen.
"What patients need is more than medicine - they are hopeless, helpless and lonely, so they need someone to listen to them, to talk to them and to help them achieve their incomplete hopes. So they can leave the world without regrets."
When his younger sister was born, 19-year-old lymphoma patient Miao felt he had been discarded by the world, as his parents and grandparents had litle time to spend with him. His illness had used up most of the savings of his family who were living in a 10-square-metre room in an old building.
He felt isolated and became depressed. Then the Xinhua Hospice sent volunteers of Miao's age who were able to take him from his silent "prison" by talking with him about football and music.
The hospice staff decided to buy a mini-TV set in a warm-colour for the desperately ill young man and contacted the Shanghai TV Sets Factory. The factory searched all its agencies and found a pink one for Miao.
The social worker tried to get a free ticket for Andy Lau's concert for Miao but he was too weak to go to see his favourite star on stage.
The last wish of another cancer patient surnamed Yang was to see his daughter one more time. His wife had left him seven years ago and taken the daughter with her. Yang had lost contact with them so the hospice's volunteers got in touch with the public security department.
When they finally found the daughter, the wife and grandparents refused to let her go to visit her dying father. The volunteers only managed to persuade them to allow the daughter to see her father a week before he died and they were able to bring her to Yang's bedside.
Today, more than 100 volunteers have joined the hospice to help patients in their last days. They include students and people whose family members have benefited from the service.
Drop in ocean
"It's a good beginning that many people are aware of the living situation of terminal cancer patients who are also a weak group in society. This indicates social progress and civilization," said Chen.
But the medical staff and the social worker at the hospice seem like lonely soldiers in the battle. According to the statistics of Shanghai Disease Control and Prevention Centre, of the 80,000 cancer patients in Shanghai, up to 30,000 are in the terminal stage. So what the Xinhua Hospice is able to do is a drop in the ocean. Caring for 500 patients a year is tough enough on the seven staff.
"We need much more support from the whole of society. Many social resources are required to help patients in need, through the Shanghai Charity Foundation and community hospitals, for instance," said Chen.
Shanghai has a good tumour control system covering the whole city, but patients are charged when doctors visit patients at home. Chen has tried to use the network to help more people, but it will take time for locals to fully accept the hospice concept.
With only two rooms in the city's east Yangpu District, the hospice can only provide home service for patients. "We need some wards so that patients can be cared for in our hospice and they can leave the world in a more comfortable environment," said Chen.
Xinhua Hospice
Tel: 3512-0101
(Shanghai Star Aug 7, 2003)
