Palliative care for terminally ill children and their families is still in a nascent stage in the country, but several organizations have in recent years been passionately championing this multidisciplinary approach

Having a child who is diagnosed with a terminal illness should not equate to suffering for everyone in the family.

Lyn Gould, the British founder of Butterfly Children's Hospice in Changsha, Hunan province, said that with good symptom control and family support, the child can still go to the seaside, visit Disneyland, or simply be out in the garden to play with the dog or friends.

The point is not to dwell on the imminent demise and be resigned to having sad memories of the child suffering in hospital, but to bring hope back to the family and allow the child to feel joy.

"When the child is gone, the family will still have those memories of their child being happy to help comfort them," said Gould.

When parents struggle to provide sufficient care for a sick child and end up abandoning him or her, Gould picks up the pieces. She has throughout the years found numerous babies who were abandoned. Many of them suffered from de-generative or neurological diseases such as cerebral palsy. Some of them even came with notes expressing their parents' regret and anguish.

Founded in 2010, Butterfly Children's Hospice can accommodate up to 18 children. In contrast to most orphanages in China where a caregiver has to manage 10 to 15 children, each nanny at Butterfly Children's Hospice takes care of no more than three and do not have to perform other duties such as cooking and cleaning of the premises. The home also employs licensed nurses to provide quality medical care for the kids.

This commitment to providing the best possible care to their children has meant that the hospice's largest expenditure is on staff salaries. Gould shared that the home's operational costs amount to around 250,000 yuan ($35,967) every month.

Since its opening, Butterfly Home has taken in 176 children. Half of them have since died while the rest are said to be recovering well from their illnesses. In addition, around 20 children have been adopted over the years, mostly by American or European families. Children who suffer from more serious conditions and require lifelong caring and special education, such as those with complex cerebral palsy, are sent to other institutions.

The scene in China

Butterfly Children's Hospice and the Children's Hospital of Fudan University had on Nov 19 jointly hosted an international forum to promote palliative care. The event in Shanghai was attended by medical professionals from Beijing, Shanghai, Hong Kong, Singapore and Malaysia.

Studies have found that there are 21 million children in the world in need of palliative care. In China, the numbers are estimated to be around 4.5 million though experts say that only few families have access to such care.

According to statistics from the World Health Organization, 98 percent of the provision of palliative care for children is in high-income countries, while 98 percent of the need is in low-and middle income countries such as China.

A March 2016 article titled Barriers in palliative care in China, published in medical journal The Lancet, cited that the country ranked 71st out of 80 countries in the 2015 Quality of Death Index by The Economist Intelligence Unit and is "facing difficulties from slow adoption 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 developmentChina'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.

A holistic way to care

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.

Intangible support

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.

A champion for the cause

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 useto 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."

zhangkun@chinadaily.com.n