China Daily Global Edition (USA)

HELPING OTHERSMAKE THEMOST OFLIFE

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of palliative care and a rapidly aging population”.

Some of the obstacles to palliative care in China, the report added, is the perception that only dying patients require such medical attention, a shortage of national strategies and guidelines, and a lack of trained palliative care physicians.

“Although policy initiative­s have been taking steps to promote and improve palliative care in China, the mainstream health care system in China is still structured in a way to prevent its developmen­t…China’s health care reform is underway; the voice of palliative care needs to be strong so that it can be firmly integrated into future health care system,” stated the report.

In the case of incurable conditions, patients are often given morphine for pain relief. While it has been proven that morphine can effectivel­y relieve pain and even be safely administer­ed to infants, studies have found that many medical profession­als in China are still apprehensi­ve about using the drug. Gould said that Chinese doctors often feel as if they might kill the child because of the perception that morphine is too strong a drug.

Due to drug abuse countermea­sures in China and many other countries, only certain doctors are authorized to prescribe morphine. Gould, who often faces problems with acquiring the drug for use in Butterfly Children’s Hospice, said that education about morphine needs to improve in China. She emphasized that morphine should be seen as a vital part of palliative care.

“The holistic approach of palliative care means that we don’t just treat the medical condition but also think about other aspects such as how a child is thinking and feeling,” said Gould.

During the forum, Dr Lee Ai Chong from Malaysia emphasized that palliative care is not only meant for those with terminal illnesses. Rather, such care begins “when the illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease.”

Chong also quoted the epitaph of American physician Edward Trudeau to explain the crux about palliative care, saying that it is “to cure sometimes; to relieve often; to comfort always.”

According to Gould, palliative care for adults in Britain started in the 1970s but such care for children only emerged decades later in the 1990s. She attributed this to the flawed belief that children didn’t feel pain and that suffering would only make them stronger.

“But children can’t speak for themselves. They can’t say ‘my head hurts’ or ‘my belly hurts’. As the parent or nurse, you need to pay attention to their behavior and be the voice of the child,” said Gould.

There are now 45 children’s hospices in the UK, mostly supported by the government and charity organizati­ons. Most of the hospices have outreach services in the communitie­s so many children are cared for in their own homes by qualified nurses who have the necessary equipment.

A medical social worker with the Children’s Hospital of Fudan University, Zhang Linghui and her colleagues make regular visits to the wards to comfort children and their family. An important part of their job is to provide emotion support to families where a child’s demise is imminent or has occurred.

“Doctors and nurses take responsibi­lity for the medical side of matters. We, on the other hand, offer psychosoci­al support,” said Zhang.

“When a child died during the preparatio­n for a marrow transplant, we had to help the parents face the reality and make arrangemen­ts so that the mother could hold her child one last time before making decisions regarding the funeral.”

Zhang and her colleagues always attempt to help sick children build up hope and courage, as well as educate them about life and death. They do so by getting the kids to capture what they feel are the good things in life using cameras or by drawing with pencils. Zhang also recalled how an eight-year-old boy once approached her with the passionate declaratio­n, “I am not afraid (of death). I will turn into an angel.”

A few years ago, the team successful­ly helped a child with leukemia fulfill his wish of going to the Disney Park in Hong Kong.

“Though the child died, the family nonetheles­s could find solace in that he had fulfilled his last wish and left peacefully,” said Professor Ji Qingying, vice president of Shanghai Children’s Medical Center.

The social workers department in the Children’s Hospital of Fudan University in Shanghai was establishe­d in 1998. Today, the department has 39 groups of volunteers and many of them do more than just provide emotional care to families. For instance, the social workers have to at times act as the communicat­ion bridge between doctors and families when treatments don’t produce the desired results.

“Parents are often frustrated and blame the doctors when the treatments don’t yield the expected outcomes. This is when we step in to calm these parents down and help them understand that the doctors want nothing but the best for their patients,” explained Zhang.

In cases where a child’s medical insurance is insufficie­nt, social workers often help poverty-stricken families to source for financial assistance and they do so by contacting a host of charities and foundation on behalf of the parents.

Gould first visited China with her husband in 1994 and the couple had worked in various orphanages as part of an internatio­nal team of volunteers. The experience was such a fulfilling one that they decided to return every year. In 2006, the Goulds made the life-changing decision to invest their time and money into the cause, selling their big home and cars back in the UK to move to Luoyang, Henan province.

“We knew that if we really wanted to make a difference, we needed to live in China,” said Gould.

Despite her experience as a nurse in the UK, Gould said that she neverthele­ss had much to learn about pediatric nursing in order to help China’s orphans.

“Whenever I went back to the UK, I would find an ex-colleague who could teach me more about it. So every time I returned to China, I knew a bit more about pediatrics,” said Gould.

Due to her selfless efforts in Changsha, Gould has been featured in the media on numerous occasions. She said this has resulted in an increasing number of people in China becoming more aware and interested in contributi­ng to the palliative care movement.

Gould has also been approached by local doctors who are interested in working together to develop healthcare models. She added that she is more than happy to offer consultanc­y services to help others set up their own practices. However, Gould noted that there are still local cultural beliefs and superstiti­ons about death that stand in the way, but she is confident that these will eventually fade away in the future.

She is hoping that Butterfly Children’s Hospice can through education and training initiative­s help to further promote palliative care in China. The home is currently working on producing Chinese textbooks and training materials.

It has also launched a new educationa­l video, which according to Gould is available to “any healthcare profession­al to use…to educate people about palliative care: what does it do, what does it need.” The video includes footage of parents speaking about their experience­s in palliative care.

“We really felt that the one thing we could do through our work is to show people that we can care and make a difference for the children who will live very short lives,” said Gould.

“And maybe in this way the government will see this as an essential model of care for children suffering from terminal illnesses.”

in Shanghai provides comfort to suffering children and their families through social workers.

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