As we continue the journey deeper into the world of hospice care, and having cared for and accompanied 9 little souls in the last days of their journey, we find the continuous need to reinforce our medical team’s knowledge of palliative care – an area of medicine that is relatively new and not taught in Indonesia. This has led us to source trainers from our neighboring countries who have volunteered their time and skills to guide our team and our community in palliative care.
Visiting Palliative Care Nurse Educator
In February, a highly experienced palliative care nurse and nurse educator, Jan Phillips, spent 2 weeks with our team. While Jan’s home is in New South Wales (Australia), she has committed a significant amount of her time in the past 5 years volunteering to Hospis Malaysia in Kuala Lumpur. Prior to that, Jan was working in Pakistan at the Shaukat Khanum Memorial Cancer & Research Centre (“SKMCH”), assisting in the implementation and development of SKMCH’s first Palliative Care Team, and establishing the Palliative Care Training programme to be incorporated into the hospital’s curriculum for nurses, doctors and allied staff.
In Jakarta, Jan quickly overcame all language barriers and won over the respect of our team, and most importantly, the trust and confidence of our patients and their parents! Our team felt confident and encouraged by the presence of an experienced palliative care nurse, who was willing to work with them and guide them in the decision making processes for our patients.
We witnessed great transformations in our team over the 2-week visit:
- Our nurses gained confidence in voicing their opinions regarding the patient’s plan of care, beyond what is typically expected of nurses in the Indonesian medical world.
- Our team was encouraged to discuss with referring oncologists the medications prescribed for our patients when it appeared that medications or dosages prescribed needed to be adjusted to ensure maximum comfort for the patients – a relatively simple concept, but a huge socio-cultural barrier!
- Jan taught our team, by example, how to care for our patients’ caregivers. She took the time to sit with the family over lunch, in the open-air ‘bale’-like canteen; with one of our nurses as a translator, Jan would enquire about the parents’ journey, their state of mind and their understanding of the graveness of their child’s condition, the welfare of the family members left behind in their village. Those special interludes gave the parents an opportunity to acknowledge that they too are suffering.
- The most critical lesson of all was how Jan taught our team to notice the unspoken suffering in the patients and their families. A precious gift.
We are truly grateful to have Jan as part of our family in this journey and look forward to welcoming her back soon.
||In late April, we launched a 2-year pediatric palliative care training program for Rachel House, organized by Singapore International Foundation (“SIF”) and funded by the Ministry of Foreign Affairs. The training program will involve a team of experienced palliative care doctors and nurses from Singapore providing a series of 6 one-weekly training frames over the next 2 years to Rachel House’s medical team.We invited oncologists, doctors and nurses from Dharmais National Cancer Centre, Carolus Hospital, social workers and nurse educators to participate in the 2-year training program. This is in line with our mission of reinforcing the local community’s ability to provide palliative care to children and spreading the knowledge of palliative care to the wider community. In the “training of trainers” approach, a total of 13 participants participated as the members of the Core Team of trainers who received rigorous bedside teachings, while 30 additional doctors and nurses participated in the general lectures.The first training frame involved 3 senior palliative care doctors and 3 nurses from Singapore, led by Dr Cynthia Goh, a consultant palliative care physician who heads the Department of Palliative Care Medicine at the Singapore National Cancer Centre and Director of the Lien Centre for Palliative Care .The 2nd training frame scheduled for end June will involve 4 palliative care nurse trainers from Singapore, focusing on various nursing aspects of pediatric palliative care. MORE|
While training in oncology for our team is now ongoing (ie. knowledge of disease progression and palliative care for post-chemo patients etc.), we are ready to move to the next step of the development of our services – expanding into palliative care for children with HIV/AIDS.
To this end, the very first step in the process is cultivating awareness and training for our team.
In June, we began assisting in a daycare facility for children affected/infected with HIV organized by Atmajaya University (led by Prof. Irwanto). We hope through this collaboration to understand better the medical care and assistance required by the children living with HIV in Jakarta today.
Basic pediatric HIV/AIDS training for medical caregivers was also organized by the Atma Jaya team on 13th June.
In end July, we will be welcoming a nurse experienced in pediatric HIV from Bangkok. Khun Usanee from Father Joe’s organization – Mercy Centre – has volunteered to guide our team and our partners in the medical care for children with HIV. Khun Usanee is the Head Nurse at Mercy Centre who has been responsible in providing care for children infected with HIV/AIDS since the peak of the HIV crisis in Thailand in the early 1990s. She will be accompanied by 2 of her colleagues on this trip.
Community Development & Awareness Campaign
One of the greatest challenges we face today is the lack of understanding of hospice care and the services provided by hospices such as Rachel House (Rachel House being the first standalone hospice in Indonesia). Aside from the training we are providing to the medical community on palliative care, we have also embarked on awareness campaigns in the neighbourhoods surrounding our inpatient hospice facility.
The first of such campaigns focused on the public health clinics and health volunteers in these communities, sharing with them the role and function of palliative care. We invited our partner oncologist from Dharmais National Cancer Centre, Dr Edi Tehuteru, to share with the audience the relevance of palliative care for cancer patients. Social workers and therapists were also invited to share the concept of multi-disciplinary teams that need to work together to provide a holistic care to patients.
Partnerships and Community Building
Puteri Kasih Indonesia (in Cilincing)
Puteri Kasih Indonesia is a group of nuns who have been serving the community of poor fishermen in Kali Baru, Cilincing.
In April, our nurses began assisting Puteri Kasih in their health clinic in Kali Baru. Through this collaboration, we hope to be able to serve the children in this community alongside the nuns, and at the same time, transfer the palliative care knowledge to the nuns/nurses.
LAP Atmajaya has started a daycare centre for children affected/infected with HIV, providing health and nutritional care, counselling and life skill education to the children.
Our nurses will begin assisting in the daycare in June. We hope to gain better understanding of the healthcare needs of this community, whilst transferring palliative care skills and knowledge to the medical team volunteering at the centre.
HSBC account opened in Singapore
After many months of anticipation, Yayasan Rumah Rachel has finally managed to open a bank account in Singapore with HSBC Singapore. Our grateful thanks to everyone at HSBC Indonesia and HSBC Singapore for their kind assistance and relentless effort. More
Online Credit Card donation NOW available
We have found a way (at long last!) to make available online credit card donation on our website. Please do visit us to witness this great milestone.
1st Audited accounts completed
Marking Yayasan Rumah Rachel’s “coming of age”, we have just received our very first audited financial report for the year ending December 31st, 2007. We are preparing ourselves for the audit of our financials for the year ending December 31st, 2008 in the next few weeks.
AWA – syringe drivers
In April, we received a donation from The American Women’s Association of Indonesia (“AWA”) towards the purchase of a (portable) syringe driver. A syringe driver introduces drug subcutaneously to patients, allowing for continuous delivery of a range of medications to aid patient comfort. This will help alleviate a significant amount of discomfort when we introduce drugs such as morphine to children. We are grateful for AWA’s generosity and support.
Children for children
A group of children from British International School (“BIS”), led by Nicole, Julia and Bobby Chui opted to run the ISCI road race in February for Rachel House. It was truly such a moving effort made by these children and their friends, who went around collecting funds (and raising great awareness at the same time) for Rachel House. This is the “children for children” spirit that we have always hoped to generate, through this work. Great big hugs of thanks to everyone who participated, and to those who contributed.
Manulife Insurance (PT Asuransi Jiwa Manulife)
We are grateful to David Beynon and his team for their support during the launch of the SIF Pediatric Palliative Care Training program. They generously offered a space at Manulife’s offices for Rachel House to hold the launch event.
And, to Crystal Jade Restaurants in Jakarta, for generously providing our guests at the SIF launch event with lots of yummy snacks.