Help bring Palliative Care to Indonesia's children

by Yayasan Rumah Rachel ('Rachel House')
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Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Help bring Palliative Care to Indonesia's children
Make a wish, Jani!
Make a wish, Jani!

When one hears or read about palliative care, the first thing that comes to mind is often about pain relief, or respite from suffering. Yet on my first visit to Jani’s house, I could sense only festivities and joy in the room, and not one ounce pain could be felt anywhere.

Jani and her mother were all dressed up and ready for a celebration when we arrived at her house that morning. It was Jani’s birthday, and I had accompanied Nurse Rifa, one of Rachel House’s palliative care nurses, on this joyous day. As can be expected of any child on her birthday, Jani was totally over the moon. As we presented her with the birthday cake, Jani laid eyes on the set of bling we had brought along! She quickly put on the  tiara and the matching jewelry set that perfectly completes her princess outfit. The decor of her home matched the occasion beautifully, the pink wallpapers of different designs and cartoon characters, including one saying “Happy Birthday”.

Sharing songs and fun-filled moments like these with Jani is something Nurse Rifa tries to do on her weekly visits to the house. However, since first meeting Jani 9 months ago, Nurse Rifa’s main task has been to manage the many symptoms that takes away the joy from this little girl. Living with HIV and pulmonary TB infection means that Jani is constantly plagued with symptoms that range from chronic cough, recurrent diarrhea, and fever that weaken her body and stop her from attending school, to sometimes scary ones where every breath becomes a challenge. On this special visit, witnessing the special bond between the family and Nurse Rifa, it was so clear for me that for Jani and her mother, Nurse Rifa has become part of the family and more; for them, the Rachel House nurse is the reason why Jani can once again play and laugh as other children do.

As Nurse Rifa began assessing Jani’s condition, I sat down for chat with Jani’s mother. As a full-time caregiver, she has the difficult task of not only tending to her daughter’s tears and tantrums when things are scary, but she has her own health to worry about (living with HIV herself). She found the support given by Nurse Rifa and the Rachel House team to be invaluable to her family's well-being, stating that, "We are so lucky to have Nurse Rifa who faithfully visits every week. I have someone to talk to, and my daughter has someone to play and study with. We are no longer alone and afraid."

Seeing the burden that is carried by Jani and her mother, I can see how having a home care team that provides both medical and emotional support are such a gift and a blessing for the family. Jani's road to recovery might not be easy, but with the combined love and care of Rachel House's nurses and her mother, I know that she has a better chance to live a full and joyous life and hopefully celebrate many more birthdays to come.

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A Rachel House nurse at her patient's home
A Rachel House nurse at her patient's home

Yogi was 16 years old when he had a motorbike accident and broke his arm. About a month after the accident, his arm became swollen and he was in a terrible pain. The X-rays showed that Yogi had a malignant bone cancer, or Osteosarcoma.

The doctors initially proposed to amputate Yogi’s arm to prevent the cancer from spreading, but Yogi refused. As time went by, Yogi’s arm became more and more swollen and the pain became excruciating. The doctors eventually introduced Yogi to Rachel House so that he and his family can receive the support they needed. Rachel House nurses coordinated with Yogi's primary oncologist to make sure he had adequate pain medication at home and was comfortable at all time. As the relationship developed and Yogi began to trust the nurses, they were able to slowly help Yogi understand his conditions, the treatment options available, and the consequences with each treatment option; this open and truthful discussion provided Yogi with the information he needed to make an informed decision about his life.

Yogi eventually opted for the amputation and decided to fight for cure. 

Happily, tests confirmed that there were no longer any cancer cells in his body. Sadly though, this did not improve the reality of a lost arm for Yogi.

He had lost his confidence. He was too embarrassed to return to school and friends had stopped visiting him at home. For Yogi, he had not only lost his arm and a full school year, but also all his friends.  Life seemed to have left him behind.

He felt desperate and afraid. Afraid of the chemotherapy that he would have to undergo. He was not afraid of the therapy itself, but of losing again. This time, he was afraid of losing his hair as a consequence of the chemotherapy. Yogi was losing sight of even hope itself.  

Then one day, hoping to ignite Yogi’s spirit and hope, Rachel House’s nurse showed him a video of people achieving amazing and seemingly impossible things even without their arms. The video had a major impact on him; Yogi understood that he had not lost everything. He realised he still had a future. 

Yogi decided to pick up his hobby again, and started playing futsal with his friends.

Smiles returned on his face when the nurse visited him. He asked if Rachel House could organise for home tutoring for him, especially in English. A volunteer responded most generously and Yogi resumed his studies from home.

Yogi eventually went back to school and resumed his life in the world. He is learning to write with his left hand and is thinking about continuing his studies at the vocational institute. He is determined to be successful in the future. “I want to be a businessman, running my own business,” he laughs.

Until today, Rachel House has provided palliative care to over 2500 children and families like Yogi who are living with HIV and cancer in Jakarta. We would like to convey our deepest gratitude for your generous support, which has allowed us to continue improving children's quality of life and adding smiles to their remaining days.

His beloved bird, adding smile & hope to his days
His beloved bird, adding smile & hope to his days
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Nurse Yuni visiting her patient at home
Nurse Yuni visiting her patient at home

On our 10th anniversary, Rachel House added bold strokes to the Palliative Care Ecosystem “tapestry” we have helped established in Indonesia, with the dream of making palliative care accessible and available for everyone living with life-limiting conditions. In 2016, our work and the influence of our work reached key stakeholders at all levels of the health system, including the prison hospitals and the School of Public Health, winning their support to bring us closer to the vision that no child should ever have to live or die in pain.

Delivering Compassionate Care (Home-Based Pediatric Palliative Care Service)

We look back on the 10-year journey and are humbled to have been given the honour of caring for over 2400 children living with cancer or HIV and their families, providing them with compassionate palliative care and support during the most challenging time of their lives, helping alleviate their pain and suffering. 

Building a Compassionate Community

We strongly believe that skilled and informed compassionate community members are an essential component to ensuring quality care for people living with chronic and life-limiting disease at home. Harnessing the spirit of gotong royong (collaboration) that is deeply ingrained in the Indonesian culture, Rachel House’s Community Network in Palliative Care (“CNPC”) Program has to-date successfully trained over 2100 community volunteers in basic palliative care skills and knowledge. 

Monthly meetings are convened by Rachel House to forge strong collaborations between CNPC-trained community volunteers and health professionals in the Primary Health Clinics. As a result, multiple teams of community volunteers are now active and vigilant in making sure that no one in their community is left alone to suffer at home without care and assistance. 

Nurturing Compassionate Palliative Care Professionals

The Clinic-in-a-Box fully accredited training program for nurses has completed its 2nd year, providing palliative care and homecare skills to now close to 100 nurses and nurse lecturers from some of the largest private and public hospitals and universities in Indonesia. The Clinic-in-a-Box training program is a critical component in Rachel House’s goal of establishing a palliative care ecosystem in Indonesia, to ensure that patients can be provided with compassionate care throughout the health system.

The surveys conducted to evaluate the effectiveness of the training program showed increased knowledge in palliative care skills in all the participants, particularly in the areas of pain assessment and management, and increasingly favourable attitudes towards a range of key concepts in palliative care including the delivery of bad news, caring for dying patients, administering morphine and patient referrals. The results of the surveys indicate the overall effectiveness of the training in improving the confidence of the nurse participants in negotiating complex issues in palliative care.

In May, for the first time we had the honour of running a Pediatric Palliative Care training that was fully accredited by IDAI (Indonesian’s National Pediatrics Society). The training was held in collaboration with The Cincinnati Children's Hospital & ICPCN, supported by a team of our young volunteer doctors.

In collaboration with Singapore International Foundation, Cancer Foundation and the Jakarta Provincial government, Rachel House continued to run the 3-year palliative care training for 80 medical professionals from 12 District and National hospitals in Jakarta. In November, we led a roundtable discussion facilitated by Dr Mark Meyer from The Cincinnati Children’s Hospital and attended by the medical directors and paediatricians from the 12 public hospitals, to discuss the challenges faced by each hospital in the implementation of palliative care. Following the success of the exchange, the roundtable will continue on a quarterly basis in 2017.

Rallying Support from Key Stakeholders

From outside the conventional health system, the Directorate General of Corrections, Ministry of Law and Human Rights extended an invitation to Rachel Houseto provide guidance on the national guidelines for palliative care in prisons and prison hospitals.

2016 also saw active training and roundtable discussions organised to engage medical and nursing schools and public health faculties of major public and private universities such as Universitas Indonesia, Universitas Padjadjaran, and Universitas Muhammadiyah Yogyakarta to build a body of research that will strengthen the case for palliative care inclusion in the health system.

Planting Seeds of Compassion Early: Medical and Nursing Students

To ensure a long-lasting impact in the health system, we are working to nurture a new generation of medical professionals who will be able to serve their patients with compassion and equipped with impeccable clinical skills. In 2016, Rachel House expanded its training efforts to include medical and nursing students, planting the seeds of palliative care values early in their career as health professionals.

We ran one-day introductory workshops for nursing students at Bani Saleh Nursing College in Bekasi, West Java, and Universitas MuhammadiyahYogyakarta in Central Java, andprovided palliative care training to aspiring doctors at YARSI Medical College. The growing interest in palliative care amongst medical and nursing schools have seen requests for Rachel House’s participation well into 2017. 

Rachel House has also welcomed fresh graduates from medical schools as medical interns in our service. The greatest impact for many of these young doctors has been when they witness the patients in the intimacy of their homes, bringing the doctors face-to-face with humanity.

Public Advocacy

The Living Wall is a Rachel House initiative designed to engage youth and students in a global campaign to increase the awareness of the plight of children living with lifelimiting illnesses such as cancer or HIV and to improve their access to paediatric palliative care. Nearly 20 schools nationwide have participated and launched the wall in their schools. We continue to drive the campaign through The Living (virtual) Wall ( and social media (Facebook, Instagram, and Twitter). On June 5th, The Living Wall presented at the Car Free Day on the main thoroughfare in Jakarta, reaching hundreds of people on their Sunday morning stroll or run.

In October, on the World Hospice and Palliative Care Day and  to celebrate the 10th anniversary of Rachel House, we shared our work on a live radio interview at Kantor Berita Radio. The show was distributed and broadcasted to hundreds of radio stations throughout Indonesia. For more information on all the publications, please click here.

It has been a fulfilling decade for all of us at Rachel House. We know that none of this would have been possible without our faithful supporters. For all this and so much more, we are eternally grateful. Thank you for helping us add life to the children’s remaining days. 

CNPC-trained community volunteers in action
CNPC-trained community volunteers in action
Clinic-in-a-Box in its 2nd year
Clinic-in-a-Box in its 2nd year
Nurturing compassionate nurses
Nurturing compassionate nurses
Accredited Pediatric Palliative Care training
Accredited Pediatric Palliative Care training
Spreading awareness on the streets of Jakarta
Spreading awareness on the streets of Jakarta
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A Rachel House nurse comforting a patient's mother
A Rachel House nurse comforting a patient's mother

Grace, a young doctor volunteering with Rachel House, reflects on her relationship with one of our young patients living with cancer, and how this patient has touched her soul. It’s a story about empathy, sympathy, friendship and loss. About plans, wishes and regrets. And about not having regrets. It’s about gratefulness. And it’s about the role and value of palliative care. But most of all, it’s the story about the courage, spirit and zest for life of an amazing 14-year old girl, who touched the lives of everyone around her.

I am a great fan of routine. I get absolutely distressed when my well-laid plans are interrupted.  This is especially so when it affects my mornings, a time usually reserved for myself. My routine typically starts with prayers and meditation, followed by breakfast, during which I scan through the latest news. On 2 September 2016, though, things were different. My morning routine was brutally interrupted by sad news of a loss. “Mariam has passed away at 02:30 hours today. May her family be given strength, courage, and patience.”

I recall running to my father’s room crying out, “Mariam has passed away…” and collapsing beside him crying my heart out. There were no words. Thoughts of her laughter passed through my mind, but I could only cry. I so much wanted to believe that she had not left us. Overwhelming pain enveloped my heart, and it was as if a thick cloud of sadness was hanging over my head.

I called Mariam’s mother, Ibu Lidia. I know that as a medical professional, I have been taught to provide support to families, but I was unable do that for her right then. Instead, we cried together. That day, my heart was shattered.

I could not even be angry about all the well-laid plans for the day that were going to be aborted. In fact, fully consciously and willingly, I abandoned all my routines. 

But I am very upset! She left before I could fulfil her last request to me.
I am upset because she left before I could fulfil my promise to visit her.
I am upset. Not with Mariam, but with myself for delaying the plans to see her with “later, later”.
I thought we had more time. How could I have forgotten that she was someone whose every day is highly uncertain, and whose tomorrow might never come?

As medical doctors, we are taught empathy, which has a lower degree of relating to others compared to sympathy. In essence, we are taught to feel, but not to be affected.

So, it could be said that, on that day, I failed. I had in fact entered the territory of “sympathy” and let my heart be involved. But is that not reasonable given I regarded her not just as a patient? Because she was more than a patient to me. She was truly amazing, and she was my friend.

I still remember when we first met.

Mariam was a 14-year-old girl diagnosed with leukemia. When we first met, she had just regained her hearing after she had lost it for some time. She had asked the nurses from Rachel House if they could bring along some gospel music for her. When we played those songs, she sang along quietly, with a shy smile on her face.

The more we interacted, the more I realised what a special girl she was. She was bright and chirpy, and she loved everything that tasted and smelled of Korea. We traded and shared many stories – from remembering her favourite Running Man series, and the Korean dramas that we had seen, to the Korean artists we loved, and even the Song triplets that we adored. We enjoyed eating together at her home. Japanese cuisine or Korean cuisine, which she loved.

She was a young girl who loved to laugh, and knew a myriad of funny riddles she would quiz me with. Isn’t that amazing? Even in the midst of her troubles, she still loved making people laugh.

She was a girl with an amazing heart. Once, when we took her to a mall, she asked us to take her to the bookstore, Gramedia. We found this a little strange and wondered if she wanted to try to read, which seemed impossible to us at the time, because she had lost her vision a few months earlier. But it turned out that she wanted to buy a book at Gramedia, not for herself, but for her sister. Isn’t that incredible? She had to face many limitations, but still remembered to give.

She was also mature beyond her age. It would have been totally reasonable for her to blame everyone, including God, for her condition. But I learned from her that gratefulness should not be only for when we are happy. In the middle of all her suffering, Mariam remained strong in her faith. She was truly mature for a girl her age.

I remember telling her about the internship program that, as a doctor, I had to go through, while what I wanted is to truly race ahead chasing my dreams. I thought she would say, “Just go with the flow”, but instead she told me, “Pursue what you love.” Such courage, unlike me.

She really was a strong girl with great courage. I cannot imagine what it must have felt like going through all the therapies and treatments for her cancer, but she appeared stoic and patient throughout. There were just a few occasions when she’d moan, but I think that was totally reasonable. Even adults would complain, so you would just expect a young one to do that so much more. Incredibly, Mariam would always bounce back and be her chirpy self again. I still continue to wonder, what the source of her strength and patience was.

The last time we met, her smile was brighter than ever. A big smile despite the fact that her condition was deteriorating, and that she had begun to need morphine to help alleviate the pain she was beginning to experience.

Even though our encounter was brief, she has left me with many wonderful memories.  That explains the huge sense of loss I felt when I received the news of her death. A loss that, sadly, was accompanied by many regrets – there were so many things that I would have wanted to do or share with her. While strewing flowers on her grave, I whispered in my heart, “I wanted to tell you about the new Korean drama… I didn't have time to tell you that I will be sent to Sukabumi for my internship… I was about to bring you a Bulgogi meal… but you are gone…"

My biggest regret would be that I did not manage to fulfil her wish to share her journey at my church! That was her biggest and most important wish. Why are there always regrets at the end?

When I shared my regrets with my father, he comforted me saying “At least, you and Rachel House’s nurses have brought joy and happiness to her in her final days.”

I’m not sure why, but hearing those words helped calm my anguish and heal my heart.

I feel grateful now. Grateful that my decision to volunteer with Rachel House has turned out to be the right one. I am grateful for all that I have learned there about the importance of palliative care. And I am grateful for having been part of the palliative care team at Rachel House which has provided care for these children. I am grateful for having been introduced to Mariam by the nurses at Rachel House. I am grateful that, at Rachel House, I was shown that my role as a doctor is not only to take care of the disease, but that it’s important to learn to “communicate heart-to-heart” with “the diseased” – the person living with the disease. I am grateful that I was taught not only to medicate, but to understand. I am grateful that, although there were many things that I did not get to complete with Mariam, I realise that through palliative care, we have managed to do a lot for her. Without palliative care, a lot more of Mariam’s dreams and wishes would have remained unfulfilled, there would be many more regrets, and it would be highly likely that Mariam would have died in a sad and painful situation.

With palliative care, we have provided Mariam with something that is infinitely more important for her. We did not only take care of her pain and symptoms, but we also put smiles on her face. We did not only fuel her courage, we also nourished her heart. We supported her during the most challenging moments of her journey, and we helped make some of her dreams come true.

Many people assume that palliative care is not that important. “Not now,” they'd say, “let’s only consider it when curative treatment is no longer viable.” Sadly, this means that many patients who need palliative care depart before having had the chance to experience the benefits of this service. In the eyes of many, including  medical professionals today, the value of palliative care is perhaps only “one”, with curative treatment valued far higher, putting a maximum value of “ninety-nine” on it if they can.

There is no doubt whatsoever that curative treatment plays an important role for patients living with life-limiting or life-threatening illnesses. But we should not forget that “99” is not complete or whole. 

We often forget that, even if palliative care carries the value of only “1”, it has the potential to complete the “99”. We forget that without the “1”, there will be no “100”. 

And yet, every patient deserves to have the best service we can provide, one that is holistic (physical, emotional, social and spiritual), to the very end of his or her life. In other words, every patient deserves a “100”, not just “99”.
And if every patient is treated in this holistic and complete way, then there will be no regrets, or the feeling that we have not given them our best. 

I feel this is the case with Mariam. She deserved to receive a full and complete “100”, and we wholeheartedly believe and know that she received this from the palliative care team at Rachel House before she left us.

And because of this, there should be no regrets, for we know deep in our hearts that we have given our very best to her.

Farewell, Mariam. Thank you for all the lessons you have given me.

 “We are not here to add days to the children’s lives, but to add life to their remaining days.” (Rachel House)

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Teguh & Dadan waiting at the doctor's clinic
Teguh & Dadan waiting at the doctor's clinic

Have you ever wondered what it is like for Rachel House’s nurses caring for children living with life-threatening illnesses in and around the metropolitan city of Jakarta? Then read this story by Dadan, one of Rachel House’s nurses, and his journey in bringing love and care to Teguh, a five-year old boy living with HIV.


“The first time I visited Teguh at his home, he refused to speak, or even look at me. But of course I did not give up. I asked him to show me some of his stuffed animals and played with him until, eventually, he came around and allowed me to examine him.

Because Teguh’s immune system was severely compromised by the HIV infection, he constantly suffered from conditions such as diarrhea, fever, and coughing. He was also malnourished, and was often too weak to play as other children do. As his nurse, I made sure that, one by one, Teguh’s symptoms were managed and that he was comfortable at home. It was not easy, because Teguh had not started taking HIV medications. These medications, often called ARV or antiretroviral, work by keeping the HIV virus level in the body low. This in turn helps the body’s immune system to recover and function as it should. However, for the ARV medications to be effective, they have to be taken in a discipline manner, and that means every day at the exact same time. If that does not happen, the virus will become resistant to the medication. Unfortunately for Teguh, the doctors would not prescribe the ARV medication for him because there was no one at home who could administer and monitor his medication.

Teguh’s mother had died when he was three years old and his father had abandoned him. He was living with his uncle, who was busy working and did not pay a lot of attention to him. Day in day out, Teguh spent most of his time alone in the house. Every now and then his grandfather, a garbage collector, would visit him after work, bringing him something to eat. But mostly, Teguh just looked after himself.

As time passed, I came to be more than a nurse to Teguh. I became a friend. I would sometimes bring him his favourite cartoons, such as BoBoiBoy, Thomas the Tank Engine, and Power Rangers. Together with other Rachel House volunteers, we would keep him company and watch the cartoons.

Every time I was getting ready to leave, Teguh would get upset and angrily throw his car toy at me. For a child who was always on his own and never felt loved, he must have been very happy that there was someone in his life who spend time with him and played with him.


One day, Teguh told me that he wanted to see a real tiger. I realized after some discussion that he had never gone for an outing in his entire life! So we made plans to go to the zoo together, which got him really excited.

On the day itself, he woke up very early, showered, got dressed, and by 6 am, he was all ready to go! Together with a few of Rachel House’s volunteers, we drove to Taman Safari Zoo in Bogor. As it was a Saturday, the traffic was congested but not once did Teguh complain. It was the happiest I’ve ever seen him, and certainly the most talkative and energetic:

“What kind of car is that?”

“Are we there yet?”

“How long before we get there?”

The car was filled with joy and laughter.

It was a big day and a long journey to the zoo and back, but when I saw the sheer wonder and delight on Teguh’s face, I knew it was all worth it. He marveled at everything he saw. When he finally saw the tiger, he asked, “Uncle Dadan, why is the cat so big?!”

Teguh passed away less than two weeks after the trip to the zoo. A few of us went to his funeral to see him buried alongside his mother. The sounds of his laughter and the memory of the joy on his face left a huge imprint in my heart, and in the hearts of many at Rachel House. Although I am sad that he had lived such a short life, I am comforted by the knowledge that we had brought love and happiness to the brief time he was under our care – and this gives me courage and determination to continue my work as a pediatric palliative care nurse at Rachel House.”

Teguh at the Aquarium
Teguh at the Aquarium
Teguh on his 1st & last trip to the zoo
Teguh on his 1st & last trip to the zoo
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Organization Information

Yayasan Rumah Rachel ('Rachel House')

Location: Jakarta, DKI Jakarta - Indonesia
Project Leader:
Lynna Chandra
Jakarta, Indonesia
$101,221 raised of $120,000 goal
689 donations
$18,779 to go
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