When medicine and doctors can no longer help a dying child, it helps to have knowledgeable and empathetic support. Indonesian NGO Rachel House is showing the way, with a little help from Singapore friends.
By Kimberly Kraft and Elaine Foo
The child was screaming. He was screaming constantly because his cancer was eating away excruciatingly at his nerves. Yet every time he screamed, his mother slapped him. “We didn’t know how to cope with the mother,” admitted Lynna Chandra, founder of Rachel House, a non-governmental paediatric hospice for the poor in Jakarta, Indonesia.
A visiting doctor from Singapore who happened to see them noticed something — that the mother had a thyroid condition and was in pain too. When the mother was treated, she began to see things more clearly. She told her son one morning that he didn’t have to wait if he wanted to go, and he passed away that very afternoon.
Dealing with a dying person is a heartbreaking affair for caregivers, but Chandra and her Singapore partners, through the project, are bringing new light to the support of terminally ill children in Indonesia. The project is creating an understanding of the plight some 8,000 families find themselves in annually in the country, because that’s how many children are diagnosed with cancer or HIV.
Understandably, most of these children prefer to die in the familiarity of their homes, even if home is in a slum, but their primary caregivers need to know how to make their last days as comfortable as possible. Meanwhile, to give their best to the terminally ill children in their hands, caregivers often need training and support too, and the nurses at Rachel House understand that all too well.
Singapore International Foundation’s (SIF) two-year paediatric palliative care project with Rachel House covered much ground to help such children and their families, but the most exciting breakthrough happened on the sixth and last trip of the mission. Chandra persuaded Cipto General Hospital in Jakarta to host two SIF workshops for their paediatric palliative doctors and nurses. Cipto is the biggest hospital in Indonesia, the equivalent of the Singapore General Hospital here. SIF’s volunteers, led by Dr Cynthia Goh of Singapore’s National Cancer Centre, conducted the workshops which included patient visits and case reviews.
Among the lessons learned was the fact that the use of morphine was not well understood and rarely used for pain management — an area considered critical in palliative care.
This breakthrough partnership with Cipto became the key reason why the two-year project, which ended in 2011, was extended by another year. This would give time to help Cipto’s doctors and nurses understand how to prepare liquid morphine in their pharmacy and to use it judiciously in palliative care, a milestone in the country’s medical practice. The extra time will also be used to help the core team develop a training curriculum in palliative care for terminally ill children.
Taking over from Dr Goh on the extended project is Dr R Akhileswaran of HCA Hospice Care, Singapore. “We were able to bring the Rachel House team and interested doctors and nurses from Cipto Hospital together to discuss what could be done for the Cipto patients in terms of symptom control. The networking was so fruitful. This to me was a great breakthrough in increasing the awareness of palliative care in Jakarta’s biggest hospital,” he said.
Cipto’s local spending and success on this front could have a huge impact on how the country’s other hospitals see and improve palliative care. None understand this growing view of end-of-life care in Indonesia better than the handful of nurses at Rachel House, some of whom travel by motorbike 50km a day through Jakarta’s famously heavy traffic into out-of-the-way parts of the city to provide home care to their patients.
On the Ground
Nurse Rina was trained in a variety of topics on palliative care through SIF’s project. Topics included pain management in terminal cancer and HIV/AIDS, communication with family members and caregivers, HIV medication, nutrition management, communication techniques (such as using toys) to evaluate pain scores for children and basic palliative nursing philosophies, among others.
Some of the new knowledge acquired meant unlearning previous practices. For instance, Nurse Susi recalled: “We can apply everything taught for the management of diarrhoea, even though it goes against hospital protocol (which is to prescribe a therapeutic milk formula). The SIF team taught us the use of rice milk and low-lactose milk and oral rehydration which has proven to quickly manage the symptoms.”
That aside, one big issue that nurses at Rachel House have to tackle is helping caregivers accept the terminal medical condition, especially if it is HIV. Even with understanding of a situation, there are often no easy answers. Nurse Milda gave an example with one of her charges: “Her caregiver was not a blood relative but a neighbour who was paid a daily fee to care for the patient. The older sibling of the patient knows that both parents died of HIV but doesn’t want the condition to be known. In this situation, how do we educate the caregiver? And what if the caregiver finds out anyway? How do we manage this?”
Life continues to be a learning journey for the core team at Rachel House. One of the lessons that Nurse Rina picked up from Dr Akhileswaran came during a visit to a patient named Putra. His family had to be told that Putra had less than a week to live. “What I learned from that,” she said, “was how to involve the family during the last moments with the patient.”
THE HUMAN TOUCH
Empathy and compassion are the soft skills that make all the difference to these sick children and their families. Volunteer Zahara Mahmood, a medical social worker from Changi General Hospital, joined a recent trip to teach Rachel House’s core team the value of social work in palliative care in helping families address terminal illness, death, grief and bereavement in a holistic manner.
She discovered: “End-of- life care is a growing area of practice in Jakarta, but palliative social work is still relatively new. There are no social work professionals who are employed to carry out palliative social work interventions in hospital settings. In the community, however, the NGOs are more forward-looking in programmes and services to support the parents and families.”
The training trip gave Zahara and the rest of the SIF volunteer team the opportunity to visit three cancer-struck children.
“All three children passed away within two weeks of our return to Singapore,” said Zahara, who took some time to come to terms with that although she had only met them briefly. “They were all young lives, not more than five years old. It must be very difficult for their parents who were so hopeful and definitely unprepared for their sudden loss. But I honestly feel our team from Singapore makes an impact on the parents’ lives. We took time to answer questions on their children’s conditions and prognoses, and they were so thankful to our team.”
If there had been any doubt otherwise, Pak Dedy, the former general manager of Rachel House, dispelled them with these words: “The SIF training has given basic palliative nursing, philosophies and theories, and mentorship and coaching, that has been greatly valuable to Rachel House nurses. SIF’s presence helps assure patients that Rachel House is responsible, professional, trained and well monitored.”
Perhaps the words that most validate the work in palliative care come from the parents, like the mother of Yana, who died of cancer when she was 10. Her mother Fanny has found new strength in her child’s death, thanks to those at Rachel House: “I am truly grateful to everyone who helped us, and thank God for the people who established Rachel House which helps lighten the spiritual and material burden for those of us with children suffering from terminal illnesses. As Yana’s mother, I am ready to help other parents facing the same situation as the one I went through, and share with them my experiences. Perhaps it may help lighten my own grief.”
Rachel House (Yayasan Rumah Rachel) is SIF’s local partner in its Palliative Care for Children project. Based in Jakarta, the NGO was founded by former banker Lynna Chandra, who brought together a team of doctors and nurses to provide professional care for terminally ill children. Palliative care, whether for children or adults, is not yet well developed in Indonesia. Rachel House is the first and only local NGO focusing on paediatric palliative care, and is at the forefront of such training in Indonesia with the help of the specialist volunteers from Singapore.
The NGO began a partnership with the National Cancer Centre at Dharmaise Hospital which is the venue for the SIF training sessions in Indonesia. Several hospitals, health institutions and NGOs participated in the training. These included Cipto General Hospital, St. Carolus Hospital, IMC Hospital, Lentera Anak Pelangi, Yayasan Budha Tzu Chi, and more. The training helped in establishing the first Paediatric Palliative Care Unit at the National Cancer Centre at Dharmais Hospital. It also spurred the IMC School of Health to develop a palliative programme as part of their Nursing Programme.
Rachel House was named in memory of Chandra’s friend, the late Rachel Clayton, who battled cancer for 13 years. While she was alive, she lived fully and with dignity and joy because she was surrounded by attention and care.