Help bring Palliative Care to Indonesia's children

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”

Building Confidence.

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.”

Links:

• Video_a glimpse into Rina's work with SIF teachers

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.