Help bring Palliative Care to Indonesia's children

Rachel House receives prestigious Presidential Award

On 21^st August 2017, Rachel House received the Presidential Achievement Award in recognition of its contribution in making available palliative care to children of Indonesia. The prestigious presidential award, held as part of the celebration of Indonesia's 72nd Independence Day, celebrates the achievements of 72 "Achievement Icons" from across Indonesia.

Pancasila, the guiding philosophy of Indonesia, guarantees the right to healthcare under its fifth principle, "social justices for all Indonesians". Rachel House's founder, Lynna Chandra, urged the Indonesian government to play an active role in ensuring the successful implementation of palliative care by issuing the guidelines and policies for palliative care to be included as a critical component of the national health system. 

Clinic-in-a-Box

To ensure good pain and symptom relief are available for all in Indonesia, medical professionals must be equipped with impeccable skills that put patients’ quality of life as a priority. Rachel House's Clinic-in-a-Box training program, now in its third year, continues to provide nurses with the skills and knowledge to effectively manage patients' pain and symptoms. Among other things, participants are taught to accurately assess and manage pain, in all its various facets ranging from physical, emotional, psychosocial and spiritual; how to communicate with patients and families with care and compassion; and the routine yet critical skills of maintaining oral hygiene and finding creative ways to ensure healthy nutrition throughout the patient’s journey.

As an important part of the Clinic-in-a-Box training, participants learned how to care for the emotional pain of patients and their families who are facing serious or terminal illnesses. Many healthcare professionals are ill-equipped to deal with death, grief, and bereavement. In Clinic-in-a-Box, nurses have the rare opportunity to explore their own attitudes towards death and dying, as well as to improve their skills in providing emotional and spiritual support for their patients.

Nurse Iin, from one of the largest national hospitals in Indonesia said, “This training truly nurtured our souls. Palliative care is the essence of nursing care. Yes, we learned about nursing, but even more than that, we learned how to care for our patients with compassion in our hearts.” 

When one hears or read about palliative care, the first thing that comes to mind is often about pain relief, or respite from suffering. Yet on my first visit to Jani’s house, I could sense only festivities and joy in the room, and not one ounce pain could be felt anywhere.

Jani and her mother were all dressed up and ready for a celebration when we arrived at her house that morning. It was Jani’s birthday, and I had accompanied Nurse Rifa, one of Rachel House’s palliative care nurses, on this joyous day. As can be expected of any child on her birthday, Jani was totally over the moon. As we presented her with the birthday cake, Jani laid eyes on the set of bling we had brought along! She quickly put on the  tiara and the matching jewelry set that perfectly completes her princess outfit. The decor of her home matched the occasion beautifully, the pink wallpapers of different designs and cartoon characters, including one saying “Happy Birthday”.

Sharing songs and fun-filled moments like these with Jani is something Nurse Rifa tries to do on her weekly visits to the house. However, since first meeting Jani 9 months ago, Nurse Rifa’s main task has been to manage the many symptoms that takes away the joy from this little girl. Living with HIV and pulmonary TB infection means that Jani is constantly plagued with symptoms that range from chronic cough, recurrent diarrhea, and fever that weaken her body and stop her from attending school, to sometimes scary ones where every breath becomes a challenge. On this special visit, witnessing the special bond between the family and Nurse Rifa, it was so clear for me that for Jani and her mother, Nurse Rifa has become part of the family and more; for them, the Rachel House nurse is the reason why Jani can once again play and laugh as other children do.

As Nurse Rifa began assessing Jani’s condition, I sat down for chat with Jani’s mother. As a full-time caregiver, she has the difficult task of not only tending to her daughter’s tears and tantrums when things are scary, but she has her own health to worry about (living with HIV herself). She found the support given by Nurse Rifa and the Rachel House team to be invaluable to her family's well-being, stating that, "We are so lucky to have Nurse Rifa who faithfully visits every week. I have someone to talk to, and my daughter has someone to play and study with. We are no longer alone and afraid."

Seeing the burden that is carried by Jani and her mother, I can see how having a home care team that provides both medical and emotional support are such a gift and a blessing for the family. Jani's road to recovery might not be easy, but with the combined love and care of Rachel House's nurses and her mother, I know that she has a better chance to live a full and joyous life and hopefully celebrate many more birthdays to come.