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A Day In The Life Of A Star PALS Nurse
23 February 2017

A Confidant, Friend and Nurse

Star PALS Nurse Ren Hui, 38, exudes a certain gentleness and peace that would calm any anxious soul — a trait that’s essential when caring for children with life-limiting or life-threatening illnesses such as those with Star PALS, a paediatric palliative-care service provided by HCA Hospice Care (HCA).

Ren Hui started her nursing career as a paediatric nurse at KK Women’s and Children’s Hospital more than 10 years ago and she hasn’t looked back ever since.

“I was drawn to Star PALS as it gave me the opportunity to have closer contact and build stronger relationships with my patients. It was something I was unable to do previously due to the sheer number of children needed to be attended to at any given time. Personally, I believe that if we want to provide better service to patients, we need to know them well.”

On a regular day, she visits about four to five patients a day. “Every visit is an opportunity for us to not only attend to our patients but also to check in with their parents, who are in most cases, their caregivers,” Ren Hui elaborates.

“The work can get quite intense, especially when the child’s condition deteriorates or when we need to broach the topic of Advance Care Planning (ACP) with their parents. Exploring treatment options and end-of-life care for their child in the event of a medical crisis can be a very sensitive topic, so the words and approach we use need to be thoughtful; always observing the reactions from the parents,” shares Ren Hui, explaining that it is times like these when she needs to remain especially alert, constantly thinking on her toes.

“For example, when I met with my patient Irfan this morning, his condition was very stable and that allowed me time to have a chat with mum. She was overcome with emotions as she shared her struggles and burdens with me.”

Irfan, 15 years old, has been bedridden with Cerebral Palsy from birth and his mother Hety, in her 40s, stays home to care for him.

Hety is an incredibly strong woman who wears a big smile on her face in spite of her difficulties. Though she says it’s difficult for her to open up to people, it was evident that she feels right at home with Ren Hui as she pours her heart out to her in between sobs. Giving Hety a gentle embrace, Ren Hui encourages her in her faith and reassures her that she is doing a good job caring for Irfan.

This trust between Ren Hui and Hety, however, was not built overnight, but over a year and a half of ups and downs.

“Before I first met Irfan’s parents, I sensed their hesitation and wariness towards our services,” shares Ren Hui. “Setting an appointment to visit them was very difficult.” But this changed when an emergency occurred — Irfan’s Nasogastric (NG) tube, which is placed through his nose to his stomach for his feeds, had been dislodged and mum frantically called Ren Hui for assistance.

“When I went over to visit the family, I realised Hety was actually a very down-to-earth person. We bonded over a session of NG-tube insertion for Irfan,” Ren Hui adds with a laugh. “Inserting the NG tube for him is a challenge. There was one time he removed the NG tube a record-breaking seven times in a day! It was a true test of Hety’s patience, but she was well equipped with the skills to manage it independently thereafter.”

The lowest point for Ren Hui during her journey with the family occurred when Irfan was discharged from Star PALS after his condition had stabilised. However, it was not long before Irfan had taken ill again with appendicitis. By the time his parents sent him to the hospital, his appendix had perforated and the infection had spread to other parts of the body. Till today, Ren Hui blames herself for not keeping closer contact with the family.

“I feel guilty for not placing more attention on him even though he had been discharged from my care. After his discharge, Irfan was placed back under my care and since then, no matter how minor the issue, whether it is a bout of flu, diarrhea, or fever, I will try to make a trip down to visit them,” says Ren Hui with a hint of tearful regret in her voice.

Her love and affection for Irfan is apparent through her interactions with him. “He is a fighter. He seems to know when mum is not feeling well and his condition will remain strong and stable so that he does not inconvenience her,” Ren Hui shares with amazement and awe in her eyes. Though he is unable to verbalise how he feels, he responds in a non-verbal way to people and things around him.

Knowing Irfan loves looking out of the window on bright, sunny days, Ren Hui opens the window to let some light in and a wide smile illuminates his face.

It is the close bonds she forms with her patients that keep her going. “There may be days when it can get exhausting, but I still enjoy what I do,” she smiles. “There’s not a day when I need to drag my feet to work.”

“Apart from attending to our patients, our aim is to also empower parents to be able to treat simple symptoms their child exhibits,” she explains.

Ren Hui jokes that it is not about bringing them through a nursing course, but educating them on managing the symptoms and doing simple assessments on their child. “I help them understand the purpose for each medication prescribed to the child so that they are able to effectively dispense it when they see similar symptoms coming up.”

“Parents are very resourceful. Some will research on the latest medicine or devices and recommend latest research and treatments for a particular disease.”

Ren Hui adds that sometimes parents become more knowledgeable than the doctors in the medical condition that their child suffers from.

At the end of a long day of home visits, Ren Hui makes it a point to not bring home the emotions encountered in the course of the day. “I believe that sometimes, things just happen. There is no point asking why, because you may not be able to find the answer after all,” she says. “Instead of asking why, find out how you can make the situation better.”

The life of a paediatric palliative-care nurse is one that is extremely fulfilling, but also accompanied by the stress of uncertainty. As for Ren Hui, her focus is placed solely on her patients and their parents — being more than just a nurse, but also a confidant and a friend to them.