Through The Eyes Of Our Volunteer

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.

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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.

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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.

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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.

 

*name changed to respect patient’s identity

My diary as a volunteer at Rachel House (by Gemma Rhodes)

“I have started this diary to record as accurately as possible not only what I have seen at Rachel House but the way it has struck me emotionally. I first got involved with Rachel House because, after working in the corporate world for seven months, I found that I had developed a desperate need to find and do something more than purely continuing to work in a capitalist capacity without even considering what was going on in the world outside of glass walled offices. It was my dad that put me in touch with one of his old school friends, Lynna Chandra, a lady who founded a pediatric palliative care hospice in Jakarta, and suggested that I contact her asking if I could help out over the summer. It is thanks to Lynna that I have been able to see and experience the following events and I hope that I will be able to give you an insight into some of the amazing work that she and her team perform.”

 

What Rachel House Means to Me – A Mother’s Perspective

Lala, my daughter aged 6 and half, was diagnosed with advanced stage Neuroblastoma on January 12, 2009. At the time, we were still living in Canberra where I was pursuing further studies on a scholarship. When Lala had a relapse in April 2010, we (Lala, Chandra and I) decided to return home to Jakarta for family support. Through the assistance of some of our close friends in Canberra and the doctor who looked after Lala at the Sydney Children’s Hospital, we got to know about Yayasan Rumah Rachel (“Rachel House” or “YRR”) and the palliative care services it provides to children like Lala. In mid June 2010, I met with the pediatric oncologist Dr. Edi Tehuteru at Dharmais Cancer Hospital (“Dharmais”), who introduced me to one of YRR’s nurses, Alisda Sihotang.

 

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A Day in the Life of a Rachel House Nurse – Jasmine Cross

It takes Susi two and a half hours to reach Rachel House’s satellite in North Jakarta. A long, tiring journey by motorbike through the heavily congested streets of Jakarta, but it is essential. Her motorbike provides a lifeline to her patients. It’s the only way she can pass through the extremely narrow streets
of the slums of North Jakarta. This is where a large percentage of Jakarta’s poor live, in haphazard, crowded housing. Most of her patients are young children with HIV due to the large number of drug addicts and high level of prostitution within the area. For Susi’s own safety it’s important that she blends into her surroundings, because she puts herself at risk each time she enters the slums.

 

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Zaidin’s Story

Zaidin

Patient Name: Zaidin
Age: 14 years old
Patient admission date: 20th July 2009
Patient passed away on: 31st December 2010

Patient History

“Sister Luki, I am calling to say I have missed you and all the nurses at the hospital…” This was a call that came in April 2010 that reconnected Zaidin to help.

Zaidin is 14. He has been fighting cancer for over 2 years. In the middle of his battle, his mother died from breast cancer leaving him and his younger sister with his father as the main caregiver.

By the time of the phone call, it had been almost a year since his mother had passed away, and more than a year since he received any treatment or had any contact with Luki, the head nurse of the pediatric ward at the National Cancer Centre who had taken wonderful care of him.

It was through that fateful phone call that Luki found out that Zaidin’s mother had passed away, and it was also not long after that call that Zaidin was referred to Rachel House.

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Sylvia’s Story

Sylvia

Patient Name: Sylvia
Age: 14 years old
Patient admission date: May 2010
Patient passed away on: November 2010

Patient History

“Mom, I know I am dying. What is the point of spending more money on chemotherapy when we know it will not make the cancer go away! Please save the money for a business you can start when I am no longer here.” These words, spoken with such wisdom from a 14 year-old, finally brought home the brutal reality of the battle that was lost, young hopes dashed.

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Baz’s Story

Baz

Patient Name: Baz
Age: 8 years old
Patient admission date: 21st November 2008
Patient passed away on: 20th July 2009

Patient History

Baz was 7 years old when he was first brought to our attention in February 2008. He had been sent home by his oncologist with poor prognosis of no more than a few months to live. He had neuroblastoma.

But as soon as Baz arrived home, he insisted on going back to school, refusing any visits by the oncology team and proceeded to live life as a 7-year old would.

Unfortunately in September 2008, as his condition began to deteriorate, he had to stop going to school.

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Siska’s story

Siska

Patient Name: Siska
Age: 13 years old
Patient admission date: 3rd April 2009
Patient passed away on: 6th May 2009

Patient History

Siska was the eldest of a family of 2 children. Her story is a great human tragedy.

It all began when Siska came home from a 3-day camping trip with bad stomach pain and high fever. After multiple visits to doctors and alternative medicines, Siska was finally referred to Dharmais Cancer Centre (“RSKD”) where she was diagnosed with ovarian cancer with metastases to the kidney. Chemotherapy treatment was carried out, after various surgeries and kidney drainage.

In February 2008 in the middle of the treatment, Siska’s parents were separated causing much distress to her family and for Siska in particular. Her treatment had to be terminated with her father’s departure, while her mother had to return to work to support the family. Siska was left in the care of a young helper in a rented room that she and her mother had moved to. Siska’s brother was sent to live with his grandmother in Central Java.

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Building the service

As we continue the journey deeper into the world of hospice care, and having cared for and accompanied 9 little souls in the last days of their journey, we find the continuous need to reinforce our medical team’s knowledge of palliative care – an area of medicine that is relatively new and not taught in Indonesia. This has led us to source trainers from our neighboring countries who have volunteered their time and skills to guide our team and our community in palliative care.

Training & Skills Development

Visiting Palliative Care Nurse Educator

Jan with Betty, Betty's father and Rachel House team

In February, a highly experienced palliative care nurse and nurse educator, Jan Phillips, spent 2 weeks with our team. While Jan’s home is in New South Wales (Australia), she has committed a significant amount of her time in the past 5 years volunteering to Hospis Malaysia in Kuala Lumpur. Prior to that, Jan was working in Pakistan at the Shaukat Khanum Memorial Cancer & Research Centre (“SKMCH”), assisting in the implementation and development of SKMCH’s first Palliative Care Team, and establishing the Palliative Care Training programme to be incorporated into the hospital’s curriculum for nurses, doctors and allied staff.

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Netty’s Story

Netty

Patient Name: Netty
Age: 13 years old
Patient admission date: 6th February 2009
Patient passed away on: 1st April 2009

Patient History

Netty was admitted at midnight on Friday, 6th February. She had insisted on going home after leaving RSKD, refusing to be admitted to Rachel House. However, by the evening of her first day home, we received a panic call for help as Netty had trouble breathing.

Netty suffered from end-stage Non-Hodgkin’s lymphoma with metastases to her lungs. She was on 5 litres of oxygen every day, battling bouts of high fever. She was weak, lying quietly in bed, lifeless and without smiles.

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