Earlier this year we had the privilege of accompanying Palliative Care Nurse Ria to visit one of her patients at their home in densely populated North Jakarta. Ria's patient that day was a seriously-ill 4 month old baby boy. He is cared for at home by his mother, who is also suffering from a life-limiting condition.

Ria works for Rachel House, an Indonesian not-for-profit (Yayasan) whose work we strongly believe in. Rachel House provide specialised medical care (known as palliative care) to children living with serious and life-limiting illnesses - such as cancer and HIV AIDS - from some of the most marginalised communities in Jakarta.

The Rachel House nurses and community health workers provide this care to children in their own homes across greater Jakarta, free of charge. In addition, they also educate and equip medical professionals and local communities with palliative care skills and knowledge to provide care for those in desperate need.

Their vision is an Indonesia where no child will ever have to live or die in pain

It was incredibly humbling for Jo and I to see first hand the work of Rachel House as we accompanied nurse Ria on her home visit. We were moved as we observed Ria at work in the tiny one-roomed house in North Jakarta. Ria's warmth, kindness and compassion were obvious as she nursed the beautiful baby boy and supported his mother in their home.

The focus of today's blog post is the work of nurse Ria. Ria shares with us her motivation to become a nurse, what an average work day looks like for her, the challenges of her work and the small things that bring her happiness.

We are sure you will agree ... it takes a very special person to do this work.

*Kenalkan: Nurse Ria

Where were you born and where did you study?

I was born in Padang in West Sumatra and moved to Jakarta in 2010 to study nursing.

Did you always want to be a nurse? 

Yes!

I always wanted to be a nurse, but in particular I had a desire to help those at a lower social economic level. I believe everyone deserves to have medical care no matter their economic status.

How did you prepare for nursing at Rachel House? 

Before I came to Rachel House I studied Nursing for five years at the University of Indonesia, then six months after graduation I started a training program in Kalimantan, it was a team program called “Penceraan Nusantara” (Indonesia Public Health) which lasted one year.

I had three months intensive training in palliative care when I first joined Rachel house – because palliative care is not yet taught to medical professionals here in Indonesia

At Rachel House we are also blessed to have a number of international specialists in children’s palliative care – from Australia, Singapore, India and beyond - who come to Jakarta and volunteer their time to provide training for the nurses and community health workers at Rachel House.

How long have you been working with Rachel House?

Almost two years

What does your work day look like? 

I live in a Indekost (kost) which is a rented room near the Rachel House office, which makes it easy to get to work on time each day. My work day begins at 8.30am and finishes at 5.30.

When I arrive to the office the first thing I do is contact the carers of the patients I am scheduled to visit that day – to check the condition of my patient, to reconfirm my visit time and to see if they need any infant milk, diapers or medications. 

At 9 am we have our daily nurse briefing – where all the Rachel House team (Currently 7 nurses and 3 community health workers) will discuss patients to be visited that day and to seek any advice on challenging medical issues. 

Around 10 – 10.30am I leave the office. Rachel House provides care to seriously-ill children in their homes across Greater Jakarta, but my area is normally North Jakarta. 

Traffic is very bad in Jakarta, so it can often take more than one hour to reach the home of my first patient – and that’s on a good day!  

I spend approximately 90 minutes - 2 hours at each home with the sick child and their family. When I visit the homes of my patients, the first thing I do  is make sure they and their caregiver are comfortable with my presence. This can mean playing with my patient for 30 minutes or having a conversation with the carer before I begin my medical assessment. Once everyone is relaxed I will begin my examination.

I am focused on managing the symptoms of their illnesses and ensuring they are not in pain. Equally as important in palliative care is addressing the psychosocial issues – the emotional, psychological and economic issues related to having a serious or terminal illness. 

Many of our patients have HIV, which is still heavily stigmatised in many communities – so we can often be the only person our patient's carers can confide in

Before I leave I always create a plan with the family on the next steps to take – whether this is monitoring of the illness, refilling the medications or monitoring for psychological changes – between this time and my next visit. And of course we will be in ongoing contact on WhatsApp so we are always there for the family. Furthermore, I keep in contact with the primary doctor on my patient’s condition.

How many children and families do you visit?

I usually have around 10 patients that I am in charge of from babies up until 18 years of age. If a patient's illness is relatively stable I will visit once per week, but more often if more care is needed.

What are the most challenging parts of your job?

The traffic! Traffic to and around North Jakarta is notoriously bad! and often dangerous with all of the containers coming to and from the docks at Tanjung Prioki in North Jakarta. In the wet season, the traffic can be even worse, and it can also be difficult to access my patients when the streets and houses in the areas that I work are flooded. 

Of course working with the patients is very challenging. In palliative care you not only manage symptoms, it’s holistic care for both the patient and their family. I also do lots of problem solving and give support in conflict resolution with family members

It can be sad especially with cancer patients where one week they are there, the next week no longer. I cope by sharing with my colleagues, self-help care and calling my mum. We don’t share with many outside the Rachel House organisation as they do not necessarily understand.

What makes you most happy with your work? 

Working as a part of a team with the Rachel House group. Also it makes me happy when the family believes and trusts in me. When a mother calls me in the middle of the night with the need to talk.

Also when a child is coming towards the end, if I can bring them some happiness and make them smile and ensure they are free from pain, this makes me happy

About Ria:

What do you do to relax: Watch a movie on my laptop, sleep, call my family.
Favourite food: Padang food - Rendang, Sate Padang, Longtong Padang, Soto, Lemon tea, Milk tea
Favourite Indonesian fruit: Snake fruit and oranges
Places in Indonesia you like to vist: The mountains and the sea
Hobbies: Running on Car Free Day.
Favourite Indonesian movies: Keluarga Cemara, 5centimeter, Ainun Habibi 
Favourite colour: Red and navy

Thank you Rachel House and Nurse Ria for allowing us to share your story.

If you would like to support the work of Rachel House and nurses like Ria, please go to https://rachel-house.org/donate/

*Kenalkan - Let me introduce

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Say Hello to Ibu Retno Hapsari of Jakarta-based Yayasan – XSProject

Words: Nurse Ria, Liz McClean & Jo Stevens  Photography: a journey bespoke