Make This Moment Count

In a 1-room house measuring 3 x 8 meters shared by 5 adults and 3 children, lay a little boy on a thin blanket on the floor. The room had no windows other than an open door that let in the hot dusty air, and sometimes a wandering rooster from the streets. For Sani, the skinny little boy lying on the floor right at the doorway, this is his whole universe – where he lies all day, every day.
 
 

At the age of just one, Sani lost his mother to HIV. When he was two, he was diagnosed with HIV with an obstructed bowel complication that resulted in a need for a colostomy.

When he was first admitted under Rachel House’s care, his father was still around and his grandfather was still alive. Both are no longer around, leaving him with his grandmother as his sole caregiver. She was the one who would nurse him through his endless fits of cough, his fever and breathlessness; the one who would change his colostomy bag ten times a day, and administer his medications – or at least tries to, as she constantly struggles to remember which medication to give and at what time.

Alone, caring for Sani and his 2 older siblings, his grandmother grows despondent. She tires easily, emotionally and physically. Sani begins to miss his doctor’s appointments at the hospital. A trip that would involve taking 4 changes of buses and a motorbike-taxi ride; a trip that not only takes 3 to 4 hours, but also one that would require funds that the Grandma no longer has. No appointments means no medications. No medications mean a compromised immune system that threatens Sani’s survival.

Rachel House’s nurse, Neng, who visits every week has watched the deterioration of the family condition with alarm. Sani has grown quiet since his father left. He has stopped eating, rejecting and throwing up food even with a feeding tube. Being close to his grandmother, Sani must also be sensing her worries.

Whenever he sees Neng enter the room, he will reach out with his feeble hand, motioning her and grunting for her to hold him. The grunt only stops when he feels her hand stroking his arm gently, while she speaks to him and his grandmother. Sani craves for a hug and a human touch – all of which is no longer available as his grandmother grows tired and preoccupied with financial worries. Neng sees the dark circles under the grandmother’s eyes and senses the burden she is carrying. So she listens to her stories and tells her what a remarkable job she’s doing.

“Come on, let’s care for Sani together,” Neng rallies behind her. “Let’s go to the hospital next week. I’ll meet you there so you won’t have to be alone,” Neng promised.

Determined to deliver the love and human touch that Sani craves for, however many remaining days he has left, Neng rallies the support of volunteers to take turns to visit – bringing him the love that he longs for.

For Sani, and many children like him, this may be all he will ever have; and so we make this moment count.

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Community Network in Palliative Care (“CNPC”) Training

Community-based volunteers play an essential role in reaching out to Jakarta’s marginalised population who are sick at home without access to basic healthcare. 

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In the month of March, coinciding with the International Women’s Day, Rachel House provided basic community-based palliative care training to 52 volunteers from the Kalibaru neighbourhood in North Jakarta. The majority of the volunteers are women who are selected based on their long-term commitment to helping others and their eagerness to learn. The training seeks to empower them with skills to provide care to the most vulnerable in their community, allowing them to act as the effective bridge between those requiring care at home and the Primary Health Centre (Puskesmas).
 

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The first day of the training brought the volunteers and the medical professionals from the Puskesmas together in a classroom in order to introduce the idea of collaboration to bring better accessibility to health assistance for those who are sick at home. 

 

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The ensuing two days of training included a structured, in-class discussion about the critical role of volunteers in helping bring health assistance to those at home. The prevalence of people living at home with chronic disease, HIV and cancer is on the rise in Indonesia and management of their needs in the community can be very complex and often inadequate. The volunteers learned how to identify those who need help; to assess and care for not only the physical needs, but also learn to identify and address the emotional, psychosocial and spiritual needs that are often just as great as the physical needs. They learned the importance of communication skills when working with people living with life limiting conditions, and the importance of collaboration in order to bring a holistic care to those in need. 
 

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The CNPC’s interactive method of teaching engaged the volunteers in activities such as patient case discussions, role-play and group work. The use of role-play emphasized the importance of communication during volunteer interaction with the patient and family in the community setting. Discussing health concerns, especially conditions which are life limiting, can be difficult and confronting. It was therefore essential that volunteers learned how to develop a trusting rapport with the patients and family and interact with great care, awareness and respect, while at the same time acknowledging their own emotions and values about end of life.

 

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After the in-class program, the volunteers were provided with the opportunity to take what they had learned and applied it in practice in the patient’s home. Rachel House Senior Nurses facilitated home visits where volunteers used what they have learned to holistically assess the needs of the patients and help them access the assistance they need in order to live comfortably at home. This in-field experience allowed the volunteers to see how they can be an effective bridge for these patients to access not only medical assistance from the Puskesmas but also other social and economic assistance when necessary. 

 

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After the completion of the training, volunteers felt more confident and expressed their enthusiasm and commitment in wanting to become community advocates for those who are ill at home. With the training provided by Rachel House they felt more prepared to reach out to their community to ensure suffering by those with life-limiting conditions can be alleviated as much as possible.

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Rachel House thanks the CNPC volunteers who have dedicated their time to provide care and support to their community. Engagement of volunteers is critical in Indonesia where the health system is still struggling due to the shortage of medical professionals. Trained volunteers can be the health extension workers that supplement the health care system and hopefully provide better accessibility and availability to health care for all in Indonesia.

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

Through the Eyes of a Summer Intern… on the World Hospice & Palliative Care Day

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(By Joyan Tan, a Rachel House Summer Intern from Yale-NUS College Singapore)

 

Death – The Last Frontier

I have asked myself the question, “How do I want to die?” countless times in my life. Depending on how I feel at the time and at what stage of my life I am at, the answer often varies – from passing away peacefully in old age to dying heroically in a fire trying to save a kid. Of course, all this assumes I even have a choice in the matter. All too often, we don’t have a choice. Death comes quickly and takes us, and our loved ones away. But what’s worse is that sometimes death comes slowly and you’re dragged through the dying process painfully and slowly.

In the two months I’ve spent with Rachel House, I’ve come the closest face-to-face with death than ever before. It’s easy to write off death when you’re only 20, because you think- surely it’s not going to come soon! I still have so much more time! But the patients at Rachel House don’t even have the opportunity to reach 20 years of age before they are robbed of their lives forever. It’s infuriating and saddening.

The first patient I met was a tiny little baby boy named Andi. He was HIV positive. He was so tiny- “like a melon”, was how Prita (Rachel House’s Program Officer) described him. He was only 4 months old, and had the tiniest fingers and toes, and it just makes you marvel at how small a human being can be. Andi’s mother was only 18. She was two years younger than me, married and had a boy to call her child. She was also wholly unprepared to be a mother.

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A Family Companion by Together for Short Lives

A beautifully and sensitively designed Family Companion by Together for Short Lives for parents/carers and family members of children and young people who have been diagnosed with a life-limiting or life-threatening condition.

At a time when things can seem overwhelming, this Companion seeks to provide a step by step guide through the complex and often confusing processes that take place following diagnosis.

It is designed to help parents think important things through, as well as provide information about what can be expected – explaining what should happen, why it should happen as well as making it clear what support should be made available, and where that support can be found.

Download for free hereScreen Shot 2014-10-05 at 10.42.53 am.

Top Tips: Managing Sibling Pain

Welcome to our new blog series – where we offer top tips to help patients and their families cope in difficult end of life circumstances. Accepting your own death can be difficult for patients, especially when they are children. But what about their families? Parents of terminally ill children are in an impossible situation: it can be very difficult to accept that your child is dying. Family members want to do everything they can to make the dying child happy and comfortable, sometimes at the expense of their own needs. We hope this series will address some of those problems.

 

Managing Sibling Pain: A Guide For Parents

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When one person in the family is sick, it affects the entire family – the environment and the dynamic.

As the parent of a terminally-ill child, your attention is naturally focused on helping that child feel as well as he/she can. This can sometimes lead to an unintentional neglect or disregard for the needs of the other children. This post hopes to offer some tips to help parents in this most challenging time.

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Patient Story: Budi

What do you do when your child suddenly loses his sight?

 

Patient Name: Budi

Age: 7 years old

Rachel House Admission Date: May 2014

Budi was five when he started complaining of headaches and blurred vision. He was also vomiting four to five times a day. After three weeks, when the symptoms did not abate, his mother decided to take him to the local clinic. The doctor diagnosed Budi with shortsightedness and prescribed him with spectacles.

When the symptoms continued and he started losing his sight, Budi’s mother took him to the hospital. After several tests, Budi was diagnosed with a neuroblastoma – a nerve-related cancer that commonly affects children. In Budi’s case, these nerve cells were found in the areas around the brain that were putting pressure on his eyeballs and causing severe headaches.

Budi was put on the waiting list to have his tumor removed. After 4 weeks of waiting and the headaches and vomiting worsened, Budi’s mother decided to take him back to the first hospital (a private hospital), despite the expense. There, the doctor told them that Budi’s condition had worsened (stage IV) and needed to be operated on as soon as possible.

Two days before the New Year in 2013 and almost 4 months since he first complained of headaches, Budi was wheeled in for the surgery. The tumor was removed, and a VP shunt was installed to drain the excess fluid that was building-up in the intercranial region. Unfortunately, after the surgery Budi lost his speech.

FACT CHECK: WHAT IS A NEUROBLASTOMA?

  • One of the most common cancer affecting children under 5 or younger
  • There are 750 cases per year diagnosed in the UK and US
  • They are often diagnosed in patients between the ages of one and two, and often begin in the nerve cells

 

Living with your child’s illness…

In March 2014, 15 months after the surgery, Budi started to regain his speech. While his speech returned to normal, he sadly never regained his sight. There were moments when Budi would pray out loud to negotiate with God for the return of his sight, in exchange for “anything”!

At around the same time, while still undergoing chemotherapy treatment, Budi started to have seizures coinciding with each time the chemotherapy drugs were administered. A CT scan result revealed that a build up of fluid had started again in the intercranial region of his brain and the VP shunt was once again installed. Budi was admitted in the hospital for three months after the procedure.

 

Accepting the end of treatment

In April, the seizures had continued with increasing regularity. Budi’s parents were informed that the tumor had unfortunately stopped responding to the chemotherapy treatment and the doctor suggested a home-based palliative care for him and referred him to Rachel House. Budi and his parents came face to face then with the harsh reality: that he would most likely not recover from the cancer.

In Budi’s case, he was blessed with a beautiful mother who dedicated her every waking hour to keeping him comfortable, happy and loved. Rachel House’s nurses together with the volunteers were there to give every support she needed to help add quality to Budi’s remaining days.

Find out more about Palliative Care or DONATE.

 

Debunking Palliative Care Myths

Introduction: What Is Palliative Care?

Welcome to our new blog post series. Each month, we will take a common misconception about palliative care and set the record straight. In this first post, we will define palliative care itself.

Rachel House is a palliative care charity – offering comfort to children with life-threatening conditions. Many people ask us what palliative care actually is. In Indonesia, even in the healthcare sector, palliative care is a relatively new model of healthcare. Below, we share the World Health Organisation definition of palliative care for children in particular.

WHO Definition of Palliative Care for Children

Palliative care for children represents a special, albeit closely related field to adult palliative care. WHO’s definition of palliative care appropriate for children and their families is as follows; the principles apply to other paediatric chronic disorders (WHO; 1998a):

  • Palliative care for children is the active total care of the child’s body, mind and spirit, and also involves giving support to the family.

  • It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease.

  • Health providers must evaluate and alleviate a child’s physical, psychological, and social distress.

  • Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited.

  • It can be provided in tertiary care facilities, in community health centres and even in children’s homes.

Palliative care has been established in the US and UK since the late 1960s, beginning with the hospice movement. It is still relatively new in Indonesia, and Rachel House’s staff are working hard to increase awareness of it in the government, healthcare sector and local communities. If you want to find out more about our work, read about our recent Roundtable discussion here.  You can also help by volunteering you time or donating.

Summer Interns 2014

It’s not what you get out, it’s what you put in…

Imagine this – arriving in a developing country for the first time, being thrown straight into the exciting challenge of working for a charity that deals with the suffering of some of the poorest members of the local community. How would you feel, being faced with death and hardship as well as the challenges of navigating a big, dirty city? Sounds like an incredible leap…

 

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This summer, Rachel House was thrilled to welcome four interns to complement our existing team in Jakarta. From the USA to The Netherlands to Singapore, our new interns offered interesting global perspectives and integrated seamlessly into our Rachel House family. Warmly welcomed, the team were able to help with creating new media videos to showcase the work of Rachel House, as well as helping to codify primary Rachel House processes.

“We sometimes think about volunteering in terms of I – how have I benefitted from the experience, what have I learned, how have I grown?” said one intern when she was asked what she learnt while helping at Rachel House. “The experience becomes centred on the self, and not on the people we are there to help and serve. My advice for new volunteers would be to keep an open heart, and in everything you do to think of the children.”

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