HOSPICES are common in Western countries, but the concept of palliative care has yet to catch on in China.
Shanghai is among the cities trying to expand its health care continuum to include services for the terminally ill.
In the past three years, the municipal government has initiated projects to train 1,000 professional hospice workers.
However, one survey found that many of those trainees didn’t end up working in hospices because they thought a job dealing with death on a daily basis would be too grim and stressful.
It’s certainly no easy work.
At the Community Health Care Center in western Shanghai’s Songjiang District, doctors and nurses working in a hospice ward set up in 2012, spoke to Shanghai Daily about the pressures of delivering pain-free and compassionate care to patients in their last days of their lives. Death with dignity.
“Everything will be okay. I’m here with you,” head nurse Yao Lanhong whispers to a frail patient as she gently massages his bluish hand.
A few hours later, the patient dies peacefully. Yao verifies the death, jots down the time in her notebook and arranges the body in a position that suggests a tranquil exit from life.
Yao has personally attended the deaths of more than 40 people in the past two years.
“Many people leave this world filled with pain and resentment,” Yao says. “Their relatives always think it’s best to find a good doctor and good hospital where they will receive treatment even if their condition is incurable. But maybe what these people want is just comfort and a loving hand to help them die with dignity.”
The health center’s hospice facility has 12 beds. Since its founding, it has served more than 100 terminally ill patients. Although the service is available to all district patients in their dying days, few apply.
Across town in Zhabei District, the Linfen Community Health Care Center was the first facility in Shanghai to offer hospice care.
Since it opened in 1988, only about 15 percent of terminally ill hospital patients have been sent to the center, and about 70 percent of those patients and their families had no idea what palliative care was at the time of transfer.
Xie Yizhen has been working at the center for about 18 years and is proud of the hospice care offered there.
“We try to help them reach a state of peace to free from anxiety and pain,” she says. “We want them to be able to say good-bye to their families amid love and tranquility. Everyone has the right to die with respect and dignity.”
End-of-life care serves are slowly catching on, fueled by the participation of nongovernmental organizations.
Huang Weiping’s Hand-in-Hand Life Care and Development Center, established in 2009, is the city’s first nonprofit program offering hospice care to people with terminal illnesses.
Volunteers who work there take a one-month course, learning how to win patients’ confidence, how to begin the very first conversation, how to communicate with family members and how to handle their own psyches when patients died.
“Everybody is welcome to work here as long as they have a caring mind — that’s the one important requirement,” Huang says.
Expanding hospice services requires changing public attitudes.
In Chinese culture, death largely remains a taboo subject. Even uttering the word is considered by some to be unlucky. Acknowledging death is something to be avoided.
“Many patients and their relatives still think that the onset of death should be fought to the dying breath,” says Dr Zeng Peijun at Zhongshan Community Health Care Center. “In the rural areas, it would be considered unfilial and disrespectful for children to abandon treatment and send dying parents to a hospice.”
Before the ward’s establishment, Zeng and Yao attended training courses in big Shanghai hospitals and in Hong Kong. They were taught how to communicate with dying patients, ease their pain and handle emergencies such as vomiting and choking.
The ward is the last stop. The patients are made comfortable and pain-free. Staff ensure they don’t feel alone or anxious at death’s door.
The hospice ward is sunny, carefully decorated with flowers and green plants, Goldfish swim in a large bowl. The scene is one of serenity.
The atmosphere helps patients and their families cope with the inevitable. Patient Auntie Yang, reduced to skin and bones by cancer, is in high spirits, chatting with her daughter and cheerfully greeting nurses who walk past.
Granny Huang, 78, tried to care for her 81-year-old husband, who was dying of cancer. The task proved beyond her, so he was transferred to the hospice ward.
“People are destined to separate in the end,” she says sadly. “My husband is lucky because our daughter and I will be with him when he leaves.”
For more alert, mobile patients, the ward has an activity room, with television, chessboards and books. At the end of a corridor, there’s a counseling room to provide any psychological help that patients or their families may need.
“Unlike doctors and nurses in ordinary hospitals, where the emphasis is on curing patients, we in the hospice know there is no cure and death is inevitable,” Zeng says. “Here it’s only a matter of time.”
All the patients in the ward are expected to live no more than three months. Most are suffering from advanced cancer that can’t be cured.
For Zeng and Yao, work in the hospice ward has required great fortitude. They both admit they were initially fearful that they didn’t have the skills or strength of character to cope with death on a daily basis.
“There was a period when I thought I couldn’t do it anymore,” Yao recalls. “If I developed a minor ailment, I would immediately think I had contracted cancer or some other serious disease. When I crossed a road, I thought I would be hit by a car and die. I realized how fragile life is.”
This summer there’s been a peak in ward deaths. That has been hard to take, Yao admits.
“They were my patients, but they were also like my friends and family after these months together,” she says. “You know what I fear most? I fear they will hang on too long and I am not sure I will be able to say good-bye to them when the time comes. We have to learn how to cope or we might just snap one day.”
Dr Zeng has had similar experiences.
“I remember their names, how they looked like and what kind of people they were,” he says of the longer-term patients. “It has been a heavy burden for me.”
Jing Jing, who had an advanced brain tumor, was the first and also the youngest patient treated in the hospice. The staff and her mother celebrated her 30th birthday in the ward before her death.
“I saw photos of her before she contracted the disease,” Yao says. “She was a really a pretty woman. It was quite sad.”
Jing had a 3-year-old son. On the day she died, her mother was crying at her bedside, while her son, not realizing what was happening, was playing and laughing nearby.
“It was such a heartbreaking, sharp contrast,” Zeng says.
Most of the patients spend a good deal of time lying in bed just moaning or staring listlessly at the ceiling. Sometimes they are vindictive in comments to staff as they vent their frustrations.
“The job can be very depressing,” Zeng says. “We don’t have the hope of cures. There is only death and no miracles.”
Doctors and nurses in the hospital learn to step aside from gloomy moods and remind themselves of the good they are doing.
“We kept telling each other to have some faith,” Yao says. “Our job is not only about death but also about love and sacrifice. This is important work because the goal is worthy.”
One night a colon cancer patient refused to go to sleep. He sat in the doctor’s office, shouting, cursing and pounding on the desk. He was mad at his son, who told his father that he had no money for treatment but later bought an apartment and a car.
“I just sat with him and let him vent his anger,” Zeng says. “He wasn’t angry with me. He was angry with his situation.”
By the following morning, the patient had calmed down. He apologized to the doctor.
“Everyone has a story to tell,” Zeng says. “Some are willing to share those stories with us; some are not.”
They once cared for a prostate cancer patient, who locked himself in his room. He refused all help. He wanted to prove he was as strong as a healthy person. He talked little and seldom mentioned his family.
“We respected him and gave him space,” the doctor says.
Many hospice patients love the opportunity to talk about their lives and share stories about their youth, their families, their regrets and even sometimes deeply buried secrets.
“They like to talk to me,” Yao says. “I’m more like a family member than a nurse.”
There are some dos and don’ts on the ward. Don’t mention death, if possible. Patients who know they are dying don’t want to be reminded about their mortality. Don’t accept money or gifts from patients’ families. Don’t get involved in family disputes. Don’t reveal your own sadness or grief.
“I believe that everyone should be comfortable of receiving compassionate care and should be treated with respect and dignity in their final days,” Zeng says.