Children
 Indonesia
Project #10284

Pediatric Hospice for the poor in Indonesia

by Yayasan Rumah Rachel ('Rachel House')
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.

Gratefulness

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

One and a half years ago, a boy started to lose his ability to move. 

One and a half years ago, the boy was diagnosed with HIV.

One and a half years ago, Rachel House was introduced to the boy.

His name is Ardi. He is seven years old. The HIV virus had compromised his immune system and caused neurologic complications. By the time Ardi was admitted to Rachel House, he had lost his ability to see, to hear, to speak, to eat and to walk. His limbs were contorted in awkward angles while he spent his days lying immobile in bed.

The “bed”, which is really a mattress, shared with his parents, his brother and his two sisters every night in a three-by-four rented room. Whenever our nurses visited, they would often find Ardi surrounded by his sisters, who continued to look after him in the most caring manner; they played and joked with him, and caringly wiped the saliva that had dribbled down his chin due to the facial paralysis.

Ardi’s father continued to harbor high hopes for him. He believed, with all of his heart, that Ardi will one day regain mobility and will return to school. Ardi had been his pride and joy; one of the top students in his class, trophies and awards lined the walls of the small room.

Ardi was referred to Rachel House to help manage the symptoms that had compromised his quality of life. Rachel House’s nurses supported Ardi’s parents with the essential skills and knowledge to ensure proper administering of medications, effective ways of managing Ardi’s feeding (nasogastric) tube, methods of easing his breathing (complicated by lung Tuberculosis), and physiotherapy exercises to help Ardi regain his strength and movement. All the big and small things that would help make Ardi’s days just a little bit easier.

But of course, the nurses’ work extends beyond just the patient. With other children to raise, Ardi’s parents needed emotional support, care and compassion; with the additional expense of Ardi’s treatment, his father had to work twice as hard to support the family. Our nurses became their friends, their trusted confidants, with whom they shared their grief and broken dreams.

A doctor once told Ardi’s parents that his paralysis was irreversible.

“But I have faith,” the father said. And that faith gave them courage. Physiotherapy was an arduous journey; with progress so slow it at times tested the father’s conviction. But little by little, Ardi’s conditions improved.

Today, Ardi is able to sit up on his own, and even stand up with support. He has regained most of his hearing and some of his sight; he is now able to watch television with his sisters, laugh at cartoon or some random celebrity gossip show. Ardi is a living proof that a father's love and faith, combined with compassionate care and appropriate treatment, can move mountain. Being HIV-positive does not mean that all is lost for these children; and it definitely does not mean that they do not deserve to live life to the fullest surrounded by the people who love them.

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, this may be all he will ever have; and so we make this moment count.

Palliative Care went from nobody's business to everybody's business

 

In 2014, the wife of the Governor of Jakarta, Mrs Veronica Basuki, announced her wish for palliative care to be available at every District Hospital in Jakarta. Overnight, Rachel House was propelled on the path towards transformative scale; and the seeds that we had patiently planted over the years blossomed to bring forth a health system that is now ready for palliative care.

 

“Business as usual” - with expanded coverage

In late 2013, we expanded our coverage to involve community volunteers - empowering them with the necessary skills and knowledge to help provide home-based palliative care for children from the marginalised communities living with cancer or HIV. The trained volunteers under our Community Network in Palliative Care(“CNPC”) Program are now collaborating with medical professionals at primary health centers in Jakarta (who are also included in the palliative care training) to bring the much-needed care to patients at home.

 

2014 also saw the beginning of our work in designing the curriculum for accredited palliative care short courses for nurses under the Clinic-in-a-Box Program. Our Clinic-in-a-Box Programwill be piloted in 2015, in collaboration with the National Nursing Association (PPNI) and the nursing faculties of several major universities, to equip nurses with home-based palliative care skills and financial skills to allow nurse to practice independently. It is our hope that the “Clinic-in-a-Box” trained nurses combined with the CNPC trained volunteers will help alleviate the suffering faced by many today due to the critical shortage of medical professionals in Indonesia.

 

Our Gratefulness & Thanks

The awesomeness of the journey in the last 12 months is something that none of us could have predicted. The part we played was simply to stand ready for the occasion. I am grateful to the entire Rachel House team who stood up to the challenge, and most of all, to all our faithful and wonderful supporters – volunteers, partners and donors - who continue to champion the cause and rally around us. Thank you. 

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Organization Information

Yayasan Rumah Rachel ('Rachel House')

Location: Jakarta, DKI Jakarta - Indonesia
Website: http:/​/​www.rachel-house.org
Project Leader:
Lynna Chandra
Jakarta, Indonesia