Project #10284

Help bring Palliative Care to Indonesia's children

by Yayasan Rumah Rachel ('Rachel House')
A Rachel House nurse comforting a patient
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)

Teguh & Dadan waiting at the doctor
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
CNPC trained volunteers in action
CNPC trained volunteers in action

While caring for children living with life-limiting conditions remain Rachel House's core mission, we realised that we can extend our reach to many more people in need by rallying the support of community members ("kader"). And hence, in 2013 we launched a community-based program named Community Network in Palliative Care ("CNPC") that provides basic palliative care training to community members and primary health professionals; where collaboration is cultivated and forged between them to provide care and assistance to those who are ill in their community --> thereby making sure that no one needs to live in pain, unloved and without care.

Watch these amazing everyday heroes in action in this beautifully and lovingly shot movie by Anatman Pictures who gifted their time and skills to bring alive stories too often hidden and untold.


2015 - Impact
2015 - Impact

Making Palliative Care Available and Accessible for All

2015 has been a fabulous year of collaborative impact. After 9 years of beating the palliative care drums alone, the year finally saw many in the medical industry in Indonesia coming to embrace the concept. This phenomena is due in no small part to the recognition of the unmet needs of the quickly rising number of people living with chronic diseases. A problem caused by the insufficient number of trained medical professionals in Indonesia, which in turn brings to question the ability of the recently established Universal Health Coverage to adequately deliver health care for all.

Rising to the Challenge: To Deliver a World-Class Palliative Care

Working in collaboration with Singapore International Foundation (“SIF”), and Cancer Foundation (YKI DKI), a 3-year palliative care training program was launched in February for medical professionals from 12 public hospitals. The aim is to ensure the availability of palliative care for all in the public hospital system.

At the primary health setting where many remains without access to healthcare, we intensified our efforts to mobilise and train community volunteers to provide care and assistance for those who are sick at home. Community Network in Palliative Care (CNPC) Program forges collaboration between trained medical professionals and volunteers to help deliver care to those in need.

Recognising the urgent need for trained palliative care nurses, we launched the  Clinic-in-a-Box program to equip nurses with home-based palliative care skills. The maiden 6-week course was launched in October this year in collaboration with Padjadjaran University in Bandung.


Our journey to establish a palliative care ecosystem in Indonesia has been paved with awesome volunteers and collaborative partners, generous and faithful supporters and donors. We are grateful to all whose continued support has helped bring us closer to our vision that no child should ever have to die in pain. Thank you. 

April 2014 - giving birth to the idea
April 2014 - giving birth to the idea

In June 2014, we posted a story on GlobalGiving about the “Groundbreaking Roundtable Discussion” initiated by Rachel House to explore alternative pathways to introduce palliative care in the nursing curriculum in Indonesia. This is part of Rachel House’s hope of training a new generation of nurses equipped with palliative care and homecare skills, to ensure the availability and accessibility of palliative care in Indonesia.


We are pleased to announce that on 1st October 2015, Rachel House launched its very first Clinic-in-a-Box training at University Padjadjaran (UNPAD) in Bandung. This is an important milestone in the development of palliative care in Indonesia. The 6-week course will equip nurses in home-based palliative care skills and financial literacy, to help empower the nurses to deliver palliative care to patients living with life-limiting conditions, including those at home.


The pioneering batch of 22 participants comprises mainly lecturers from nursing faculties across West Java. With their hearts opened and passion awakened for palliative care, these lecturers will go on to touch the lives of many young nurses in Indonesia to encourage each to be the advocate for their patients.

Clinic-in-a-Box launched on 1 Oct 2015
Clinic-in-a-Box launched on 1 Oct 2015
Building skills & passion @ Clinic-in-a-Box
Building skills & passion @ Clinic-in-a-Box
Encouraging teamwork towards patient-centric care
Encouraging teamwork towards patient-centric care

About Project Reports

Project Reports on GlobalGiving are posted directly to by Project Leaders as they are completed, generally every 3-4 months. To protect the integrity of these documents, GlobalGiving does not alter them; therefore you may find some language or formatting issues.

If you donate to this project or have donated to this project, you will get an e-mail when this project posts a report. You can also subscribe for reports via e-mail without donating.

Get Reports via Email

We'll only email you new reports and updates about this project.

Organization Information

Yayasan Rumah Rachel ('Rachel House')

Location: Jakarta, DKI Jakarta - Indonesia
Website: http:/​/​
Project Leader:
Lynna Chandra
Jakarta, Indonesia

Learn more about GlobalGiving

Teenage Science Students
Vetting +
Due Diligence


Woman Holding a Gift Card
Gift Cards

Young Girl with a Bicycle

Sign up for the GlobalGiving Newsletter

WARNING: Javascript is currently disabled or is not available in your browser. GlobalGiving makes extensive use of Javascript and will not function properly with Javascript disabled. Please enable Javascript and refresh this page.