For many of us, imagining the plight of a terminally ill child is impossible. When death becomes a reality of life, any small kindness can help to improve a child’s remaining days.
At Rachel House, we help terminally ill children find peace and happiness at the end of their lives. We work in the poorest communities of Jakarta to raise awareness about palliative care, to look for new patients, and to make a difference to the healthcare system in Indonesia on a larger scale.
Since our last report, our nurses have travelled hundreds of kilometres along the back roads of Jakarta to reach patients in their homes, offering pain relief, advice for the parents and a shoulder to cry on. We need more nurses to spread out further into the poorest areas of Jakarta, and to raise awareness in the community.
We will tell you the story of one little girl, Karina, and how Rachel House has been able to help her. How many more children are there who need our help?
Shining a light on those in distress
Karina is a three-year-old girl who has lost her mother and brother to HIV. Karina's father is a gentle spirit, also suffering from HIV: now, they only have each other.
The family moved to Jakarta from their village to earn a living. Karina and her father are living in a car park during the day and sleeping in a rented room at night. Without a residence, they are struggling to get a permit to access healthcare. They have to rely on the kindness of the healthcare centres and on Rachel House nurses to get the medicine Karina needs. Her father is also suffering with his own symptoms, which makes it difficult for him to care for her.
Karina suffers from HIV and Lung tuberculosis, and recently her symptoms have been getting worse. She is unable to eat without vomiting and she cries out for her mother. As she finally realises that her mother and brother won’t be coming back, she withdraws into herself, clutching a photograph of her lost family members wherever she goes.
Without the weekly visits of Rachel House nurses, it would be impossible for Karina’s father to get the medication to ease her condition and improve her quality of life. Due to strong relationships forged with the healthcare centres, the nurses are able to lobby for treatment and help the father get the permit he needs. Karina’s life is hard enough, and if we can ease her pain and greet her with a smile, we can improve her quality of life. A little joy goes a long way.
Training volunteers and community members
From one tree, you can make a thousand matches…
Stories like Karina’s are why Rachel House was founded: on the belief that no one should suffer alone. Our other aim is to change the healthcare culture in Indonesia and the developing world. As in the Western world 30 years ago, palliative care is new to many healthcare professionals here. When a child is terminally ill with cancer or HIV, and when treatments are no longer viable, it is difficult to convince the doctors that it would be kinder to manage their pain and symptoms to make their final days comfortable than it is to keep putting them through painful treatment.
Community Network in Palliative Care (“CNPC”) Program
After careful community research, we set up the CNPC program in late 2013 to help spread the awareness about the aims of palliative care amongst community volunteers and the general population in Jakarta. Targeting the poorest areas, this program has proved very successful in making connections and encouraging collaboration between healthcare centres, nurses, community volunteers and hospitals. It has helped demonstrate that teamwork and communication are needed to give these children the best possible experience in the last days, weeks or months of their lives. Despite being run mainly by one nurse, this program has got off to a flying start. Now we need further help to grow the program and maintain the good work it has already achieved.
2013 has been a year that launched wondrous new beginnings filled with amazing blessings. The year saw Rachel House’s work validated in important ways, nationally and internationally.
a) Rachel House Palliative Care Workshops received accreditation from the National Nursing Association (PPNI);
b) A Memorandum of Understanding was signed with Cipto Mangunkusomo Hospital, the National Public Referral Hospital to provide palliative homecare for their pediatric patients;
c) We welcomed the medical audit team assembled by Singapore International Foundation and are delighted to announce that the audit was passed successfully.
Internationally, Rachel House was invited to speak at the Asia Pacific Hospice Conference 2013 event – a first for Indonesia.
Launch of New Initiative
In the 7th year of our operations, Rachel House launched the Community Network in Palliative Care (“CNPC”) program to bring basic palliative care training to community volunteers and empower women community volunteers in North Jakarta to care for those who are sick in their communities.
Every year, 500,000 people are estimated to be sick at home in Jakarta without access to healthcare or with no knowledge of how to access healthcare. It is our hope that the trained CNPC community volunteers can help those who are sick in their community to navigate through the public health system, refer them to the appropriate health channels available and if needed, help provide basic care at home.
The 1-week classroom training and 4-week field training was piloted in October, starting with 10 senior women volunteers from 2 RWs*.
At the time of writing, the homecare service has reached a total of 125 patients in 2013. Training of medical professionals from public and private health institutions has also intensified with the launch of our palliative care advocacy work.
The Blessings of Volunteers, Donors & Supporters
This has been a year of incredible blessings with wonderful support from donors and supporters.
In answer to our prayers for assistance from palliative care professionals, we were blessed with visits from international palliative care experts from Singapore, New Zealand, Australia and United Kingdom. As an absolutely fabulous bonus, we also received volunteer applications from 2 palliative care and oncology-trained nurses who happened to be in Indonesia with their families, who are both immediately welcomed into our family and our patients’ families.
Finally, we would like to thank all our most wonderful donors and supporters for their continued faith in our work, for walking with us on this journey and for making this work possible. Thank you for giving us hope.
“Hope is like a road in the country;
there wasn't ever a road, but when many people walk on it,
the road comes into existence.” ~ Lin Yu-tang
*RT or Rukun Tetangga could be best translated as a “Neighbourhood Association”, and is typically made up of 10-20 households (or families). Whereas RW or Rukun Warga is “Community Association” consisting of 5-10 RTs.
In April 2009, Rachel House signed a 2-year Pediatric Palliative Care Training assistance with Singapore International Foundation. This was to be the first pediatric palliative care training available for medical professionals in Indonesia, and the training that launched Rachel House’s palliative care service.
On October 3rd 2013, the team returned to conduct an audit of the medical team they have trained, and to review the outcome and impact of the 3-year program (program extended by 1 year) that consisted of 8 weeks of training.
The audit team went on visits to patients’ homes to assess the quality of care that is being provided by the Rachel House nurses to the patients and their families. Rigorous reviews were conducted on patient reports and documentation, medical and operational protocols of the service. Nurses’ critical thinking was tested, systems and processes audited.
The team also reviewed the nurses’ presentation skills, to assure themselves that the knowledge imparted to the team will be disseminated to others in Indonesia.
We were thankful to Singapore International Foundation for organising the audit team (wonderful volunteers) to systematically review the work and patient care by Rachel House's team - all of which gave us an opportunity to improve the quality of our service.
Rachel House was also fortunate to have a nurse volunteer, Lyn Rhodes-Cheong, from Durham (UK) to work with the nursing team for 2 weeks following the audit to implement the recommendations by the Audit Team.
Despite not knowing much about caring for terminally ill children, former paediatric ICU (Intensive Care Unit) nurse Rina Wahyuni, 34, took a leap of faith in 2008 to work in Rachel House.
While working in an ICU, Rina often felt conflicted when she witnessed attempts to cure children who were dying. “I often thought in my heart, it is not possible for this child to be cured based on his medical history. Why they are still trying to cure him? This child is tired already.”
Today, Rina and her colleagues at Rachel House are instrumental in advocating palliative care in their community. They provide end-of-life care for patients from families who cannot afford medical care. And they share their knowledge and experiences as a palliative care nurses to raise awareness among the medical community in Jakarta.
Cheering her on in her journey as a palliative care practitioner were groups of specialist volunteers from Singapore who shared their expertise through eight training visits that the SIF organised from 2009 to 2012.
“When I first started out, it was difficult to even find information on what palliative care is all about here in Indonesia,” says Rina. “But with SIF’s training over the past four years and with the knowledge I gained, I grew more confident in spreading and promoting palliative care”
Beginning in 2009, a total of 20 palliative care specialist volunteers from Singapore travelled to Jakarta, each time spending a week to train the Rachel House staff in an effort to improve medical services for children suffering from life-threatening diseases. Each team consisted of a multi-disciplinary team of volunteer doctors, nurses and social workers.
The Singapore volunteers taught Rina the essence of palliative care – a holistic approach that provides quality of life for patients through pain and symptom management, while integrating the emotional support of family into the plan of care.
As this approach to medical care is a relatively new field in Indonesia, knowledge imparted by the Singapore volunteers has proven to be a confidence booster for Rina whenever she attempts to share the concept of palliative care with others.
“Initially, it was a huge challenge for us when we tried to share the approach of palliative care with our medical colleagues as many of them were not even aware of it,” she says. “Often we faced difficulties when we work with co-ordinating doctors who do not share our perspective on caring for patients who are dying.”
This newfound knowledge also enabled Rina to improve communication with patients’ families. “Now I am better equipped when I have to inform parents about the prognosis of their child’s illness. I also try to educate the caregivers about palliative care using what I have learnt from the Singapore volunteers.”
Enhancing their clinical skills and knowledge has also helped Rachel House gain medical credibility within the healthcare community in Jakarta. It now receives referrals from eight public hospitals, one private hospital and 15 healthcare clinics – all of which did not know about palliative care prior to working with Rachel House.
Paying it forward.
Efforts by the Singapore volunteers have empowered the staff of Rachel House to be catalysts for change in their professional community. In public outreach activities organised by Rachel House, Rina and other nurses regularly share their experiences with other medical professionals. They have also been invited to nursing schools to give talks on palliative care nursing.
“This is a new area of knowledge for us here in Indonesia and I believe I must learn continuously, so I can share my knowledge and influence other colleagues to incorporate palliative care into their practice.”
There are many stories that are left untold in the daily travels of Rachel House's nurses - stories tucked deep in their hearts that speak of great devastation.
This is a story of a little boy's brave journey. Miki was 6 month-old when his health problems began. What started with a cough quickly degenerated into more serious TB, diarrhoea and malnutrition. Life has not been easy for the little soul who has been in and out of the hospital too many times. The medical expenses have drained the family's resources of US$4/day. In a 12sqm room tucked behind the high-rise buildings in the Central Business District of Jakarta, Miki's family share the tiny poorly ventilated space with another family. Miki was finally referred to Rachel House by his doctor to help stabilize his condition and to provide sympton management and support to his mother.
The photos below capture a visit by one of Rachel House's nurses, Rina, to Miki's home to monitor his progress and to help manage the many symptoms that have caused him grave suffering, and great distress to his parents.
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