Ira’s Story

A home visit with Rachel House’s newest nurse – Dadan

Approaching a group of houses in the late morning, there is evidence that a hard days’ work has already begun. On the ground, mung beans lay drying on a tarpaulin and the smell of fresh laundry hangs in the damp but hot air. As Dadan approaches the entrance of a modest sized room, he is greeted quietly by Ira’s father. He quickly escorts us to his wife and daughter, then slips away. Ira is sitting on a mattress on the ground. Her legs are limply sprawled out in front of her and her upper body is hunched over a long yellow pillow. It is hard to see her tiny frame as it is hidden in blankets. Dadan softly takes her hand, greets her and asks how she is today. She whispers a “halo” and looks back up to the television. Her mother smiles warmly as she sits beside her.

Ira is seven years old and has a cancer called neuroblastoma. It has spread throughout her body- to her lungs, liver, heart and stomach, making her condition terminal. She has recently been discharged from hospital and Dadan has come to see how she is doing at home. Sitting on the floor beside her, he reaches into his bag and pulls out two books about princesses. Ira accepts them with interest. A princess crown decorates her pink shirt.

Dadan chats to mom to get an update on how Ira is doing. She informs him that Ira has an appointment tomorrow to get an echocardiogram. This will show how her heart is functioning under the stress of her cancer and recent chemotherapy treatment.

Dadan is the most recent member of the Rachel House team of registered nurses who visit children at home; these are the children who have been diagnosed with life-limiting illnesses. After three years caring for children in a Jakarta hospital, he decided to expand his skills as a peadiatric nurse in the home care setting. When asked what he finds special about the work Rachel House does, he humbly explained how the organisation reaches out to children and their families who otherwise may not have easy or affordable access to health care. He says he has received very positive reactions from patients, their families and their communities about the care Rachel House provides.

Ira reaches to her foot and tells Dadan that it is painful and pounds her fist into her hand in an attempt to try to describe how it feels. A tear falls down her cheek and Dadan comforts her by gently rubbing her back. Mom tells her to be brave. Her medical notes indicate that she does not have any pain medication prescribed, only tablets for her ailing heart. Dadan collects more information about her pain. It is a new pain. It started suddenly. It comes and goes. It is only on the left side. She had paracetamol this morning. She can’t move her leg or wiggle her toes and she becomes slightly annoyed by this question, maybe because she knows she should be up dancing and playing like other kids her age.

Despite this, Ira remains stoic and shows off her sense of humour. Dadan asks about her pain again, “If there are five ants, how many ants are biting you?” She replies smartly, “I don’t want ants to bite me!” She returns to flipping through her new books and proudly tells us that she likes to draw. Her mom, proud of her too, produces a bag of all her colouring and drawing that she has done during her hospital admissions. This seems to distract Ira momentarily from her discomfort.

Dadan enquires about her wounds that have developed on her sacrum. Previous nurse visits have documented the progress of two pressures sores that have developed into deep wounds. This probably contributes to her inability to move her legs.  Ira states that they do not cause her any pain. Fortunately the dressings do not need to be changed today which spares her the long and uncomfortable process.

Though Ira willingly engages with Dadan, she indicates that she doesn’t want a male nurse to look at her belly or listen to her back. Dadan respects this request and remains sitting beside her. He asks about her appetite, her ability to sleep, and if she is taking her heart medications as prescribed. Ira’s mom asks questions too, “Is this cancer genetic?” “Will my daughter be healed?” Ira suddenly looks up to her mom and sternly says, “Why would you ask that? Of course I will be healed!”

Too often, Rachel House nurses have these conversations with anxious and scared parents and carers of children who are dying. Before working at Rachel House, Dadan had only heard of palliative care while in nursing school. Before now he did not know what it looked like, or how it influenced patient care and treatment. Part of Rachel House’s mission is to raise the awareness of palliative care by engaging the community in discussions around death and dying and to teach health professionals the knowledge and skills to care for someone at the end of their life.

With time Ira becomes comfortable with Dadan and tells him that he can look at her stomach and listen to her chest. Dadan exercises care while he continues his nursing assessment. Ira’s stomach is very distended and firm, her chest sounds are coarse and her skin is very warm. Dadan encourages Ira’s mom to give her paracetamol again to ease her pain and bring down her temperature. Dadan provides assurance that he will follow up with them again after her appointment at the hospital tomorrow. He reminds Ira’s mom to tell the doctor about the pain on Ira’s foot so that she can be prescribed proper analgesic. Mom says she will and tells Dadan that if she forgets, she is sure Ira will tell the doctor about her pain; she is very upfront like that. Ira tells us that she once told the nurse who was taking her blood that if they didn’t get enough from her arm, they could try her neck or eyebrows.

Dadan thanks Ira and her mom for the visit this morning and he leaves to return to the Rachel House office where he will meticulously document his assessments and nursing care. Dadan believes that Rachel House is a real pioneer of palliative care in Indonesia. As a beginning practitioner in this field, he acknowledges that his own understanding of palliative care is the most challenging part of the job, especially in a healthcare environment where the concept of end of life care is relatively new. “I am still learning,” he says, “there is no doctor in the home, you have to be able to work independently.” But he sees the positive outcomes from the work he and the other Rachel House nurses provide and holds hope that palliative care will become an important part of Indonesia’s overall healthcare plan. Of all the things that Rachel House has taught him so far, he says he has learned the importance of patience and kindness, the attributes that are without a doubt, the hallmarks of palliative care nursing.