Through the Eyes of a Summer Intern… on the World Hospice & Palliative Care Day

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(By Joyan Tan, a Rachel House Summer Intern from Yale-NUS College Singapore)

 

Death – The Last Frontier

I have asked myself the question, “How do I want to die?” countless times in my life. Depending on how I feel at the time and at what stage of my life I am at, the answer often varies – from passing away peacefully in old age to dying heroically in a fire trying to save a kid. Of course, all this assumes I even have a choice in the matter. All too often, we don’t have a choice. Death comes quickly and takes us, and our loved ones away. But what’s worse is that sometimes death comes slowly and you’re dragged through the dying process painfully and slowly.

In the two months I’ve spent with Rachel House, I’ve come the closest face-to-face with death than ever before. It’s easy to write off death when you’re only 20, because you think- surely it’s not going to come soon! I still have so much more time! But the patients at Rachel House don’t even have the opportunity to reach 20 years of age before they are robbed of their lives forever. It’s infuriating and saddening.

The first patient I met was a tiny little baby boy named Andi. He was HIV positive. He was so tiny- “like a melon”, was how Prita (Rachel House’s Program Officer) described him. He was only 4 months old, and had the tiniest fingers and toes, and it just makes you marvel at how small a human being can be. Andi’s mother was only 18. She was two years younger than me, married and had a boy to call her child. She was also wholly unprepared to be a mother.

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A Family Companion by Together for Short Lives

A beautifully and sensitively designed Family Companion by Together for Short Lives for parents/carers and family members of children and young people who have been diagnosed with a life-limiting or life-threatening condition.

At a time when things can seem overwhelming, this Companion seeks to provide a step by step guide through the complex and often confusing processes that take place following diagnosis.

It is designed to help parents think important things through, as well as provide information about what can be expected – explaining what should happen, why it should happen as well as making it clear what support should be made available, and where that support can be found.

Download for free hereScreen Shot 2014-10-05 at 10.42.53 am.

Top Tips: Managing Sibling Pain

Welcome to our new blog series – where we offer top tips to help patients and their families cope in difficult end of life circumstances. Accepting your own death can be difficult for patients, especially when they are children. But what about their families? Parents of terminally ill children are in an impossible situation: it can be very difficult to accept that your child is dying. Family members want to do everything they can to make the dying child happy and comfortable, sometimes at the expense of their own needs. We hope this series will address some of those problems.

 

Managing Sibling Pain: A Guide For Parents

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When one person in the family is sick, it affects the entire family – the environment and the dynamic.

As the parent of a terminally-ill child, your attention is naturally focused on helping that child feel as well as he/she can. This can sometimes lead to an unintentional neglect or disregard for the needs of the other children. This post hopes to offer some tips to help parents in this most challenging time.

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Patient Story: Budi

What do you do when your child suddenly loses his sight?

 

Patient Name: Budi

Age: 7 years old

Rachel House Admission Date: May 2014

Budi was five when he started complaining of headaches and blurred vision. He was also vomiting four to five times a day. After three weeks, when the symptoms did not abate, his mother decided to take him to the local clinic. The doctor diagnosed Budi with shortsightedness and prescribed him with spectacles.

When the symptoms continued and he started losing his sight, Budi’s mother took him to the hospital. After several tests, Budi was diagnosed with a neuroblastoma – a nerve-related cancer that commonly affects children. In Budi’s case, these nerve cells were found in the areas around the brain that were putting pressure on his eyeballs and causing severe headaches.

Budi was put on the waiting list to have his tumor removed. After 4 weeks of waiting and the headaches and vomiting worsened, Budi’s mother decided to take him back to the first hospital (a private hospital), despite the expense. There, the doctor told them that Budi’s condition had worsened (stage IV) and needed to be operated on as soon as possible.

Two days before the New Year in 2013 and almost 4 months since he first complained of headaches, Budi was wheeled in for the surgery. The tumor was removed, and a VP shunt was installed to drain the excess fluid that was building-up in the intercranial region. Unfortunately, after the surgery Budi lost his speech.

FACT CHECK: WHAT IS A NEUROBLASTOMA?

  • One of the most common cancer affecting children under 5 or younger
  • There are 750 cases per year diagnosed in the UK and US
  • They are often diagnosed in patients between the ages of one and two, and often begin in the nerve cells

 

Living with your child’s illness…

In March 2014, 15 months after the surgery, Budi started to regain his speech. While his speech returned to normal, he sadly never regained his sight. There were moments when Budi would pray out loud to negotiate with God for the return of his sight, in exchange for “anything”!

At around the same time, while still undergoing chemotherapy treatment, Budi started to have seizures coinciding with each time the chemotherapy drugs were administered. A CT scan result revealed that a build up of fluid had started again in the intercranial region of his brain and the VP shunt was once again installed. Budi was admitted in the hospital for three months after the procedure.

 

Accepting the end of treatment

In April, the seizures had continued with increasing regularity. Budi’s parents were informed that the tumor had unfortunately stopped responding to the chemotherapy treatment and the doctor suggested a home-based palliative care for him and referred him to Rachel House. Budi and his parents came face to face then with the harsh reality: that he would most likely not recover from the cancer.

In Budi’s case, he was blessed with a beautiful mother who dedicated her every waking hour to keeping him comfortable, happy and loved. Rachel House’s nurses together with the volunteers were there to give every support she needed to help add quality to Budi’s remaining days.

Find out more about Palliative Care or DONATE.

 

Debunking Palliative Care Myths

Introduction: What Is Palliative Care?

Welcome to our new blog post series. Each month, we will take a common misconception about palliative care and set the record straight. In this first post, we will define palliative care itself.

Rachel House is a palliative care charity – offering comfort to children with life-threatening conditions. Many people ask us what palliative care actually is. In Indonesia, even in the healthcare sector, palliative care is a relatively new model of healthcare. Below, we share the World Health Organisation definition of palliative care for children in particular.

WHO Definition of Palliative Care for Children

Palliative care for children represents a special, albeit closely related field to adult palliative care. WHO’s definition of palliative care appropriate for children and their families is as follows; the principles apply to other paediatric chronic disorders (WHO; 1998a):

  • Palliative care for children is the active total care of the child’s body, mind and spirit, and also involves giving support to the family.

  • It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease.

  • Health providers must evaluate and alleviate a child’s physical, psychological, and social distress.

  • Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited.

  • It can be provided in tertiary care facilities, in community health centres and even in children’s homes.

Palliative care has been established in the US and UK since the late 1960s, beginning with the hospice movement. It is still relatively new in Indonesia, and Rachel House’s staff are working hard to increase awareness of it in the government, healthcare sector and local communities. If you want to find out more about our work, read about our recent Roundtable discussion here.  You can also help by volunteering you time or donating.

Summer Interns 2014

It’s not what you get out, it’s what you put in…

Imagine this – arriving in a developing country for the first time, being thrown straight into the exciting challenge of working for a charity that deals with the suffering of some of the poorest members of the local community. How would you feel, being faced with death and hardship as well as the challenges of navigating a big, dirty city? Sounds like an incredible leap…

 

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This summer, Rachel House was thrilled to welcome four interns to complement our existing team in Jakarta. From the USA to The Netherlands to Singapore, our new interns offered interesting global perspectives and integrated seamlessly into our Rachel House family. Warmly welcomed, the team were able to help with creating new media videos to showcase the work of Rachel House, as well as helping to codify primary Rachel House processes.

“We sometimes think about volunteering in terms of I – how have I benefitted from the experience, what have I learned, how have I grown?” said one intern when she was asked what she learnt while helping at Rachel House. “The experience becomes centred on the self, and not on the people we are there to help and serve. My advice for new volunteers would be to keep an open heart, and in everything you do to think of the children.”

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The Future of Palliative Care in Indonesia – Rachel House’s Groundbreaking Roundtable Discussion

Bringing Indonesia’s palliative care key players together with Dr Suresh Kumar…

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With Palliative Care Day just around the corner (8th October), we thought we’d update you all on the steps we’ve been taking this year spread knowledge about palliative care throughout Indonesia.  On 26th March 2014, Rachel House hosted a groundbreaking Roundtable event, inviting key players in healthcare in Indonesia to come together and discuss the alternative pathways of introducing palliative care into nursing school curriculum in Indonesia. Dr. Suresh Kumar, Director of the WHO Collaborating Centre for Community Participation in Palliative Care and an expert on community-based palliative care, came from India to attend the discussion and to share his experiences.

The event brought together key influencers in healthcare in Indonesia with senior representatives from the Ministry of Health and the Ministry of Education, major universities and hospitals across Indonesia, the heads of National Nursing Association, National Bachelor of Nursing and Diploma of Nursing Associations – to discuss ways of improving general knowledge about palliative care amongst medical professionals and the critical collaboration needed between stakeholders to make this possible.

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Program Manager WANTED for Rachel House

Rachel House's Community Program

Yayasan Rumah Rachel (YRR) adalah lembaga nirlaba bergerak dalam asuhan paliatif anak. Sejalan pengembangan kerja yang membutuhkan dukungan beragam pemangku kepentingan yang sama-sama memahami pentingnya asuhan paliatif bagi anak Indonesia, YRR mengundang para penggiat kerjasosial untuk bergabung dalam kerja besar ini.

Posisi:
Pengelola Program (Program Manager)

Lokasi:
Jakarta

Peran:
Merancang, merencanakan, melaksanakan, memantau serta mengevaluasi upaya/program terkait beragam pemangku kepentingan, menunjang asuhan paliatifanak.

Cakupan Kerja:

·         Merancang dan merencanakan beragam program.
·         Menyusun anggaran beragam program.
·         Mengelola pelaksanaan beragam kegiatan atau upaya.
·         Memfasilitasi sesi dengan beragam pemangku kepentingan.
·         Mengelola beragam event.
·         Menyusun dan memproduksi materi komunikasi terkait beragam program.
·         Membina relasi dengan beragam pemangku kepentingan.
·         Mengelola kerja timYRR dan/atau bersama pemangku kepentingan lain.
·         Memantau pelaksanaan program.
·         Mengevaluasi program denganberagam metode yang mungkin dan perlu dilakukan.
·         Menyusun laporan atau dokumentasi terkait.

Kualifikasi:

·         Minimal S1.
·         Berpengalaman mengelola program/upaya lebih dari delapantahun kerja.
·         Memiliki jejaring pemangku kepentingan yang luas terutama dalam bidang kesejahteraansosial.
·         Peka dan memahami konteks politik, ekonomi, sosial, budaya masyarakat Indonesia.
·         Memahamisistemterkaitkesejahteraansosial Indonesia.
·         Tangguh bekerja di lapangan.
·         Memiliki kematangan social dan terampil berkomunikasi dengan beragam pemangku kepentingan.
·         Mampu bekerja dalam tim secara efektif.
·         Mampu mengoperasikan system dan perangkat lunak dasar perkantoran.
·         Fasih berbahasa Inggris dan Indonesia secara lisan dan tulisan.
·         Bermanfaat bila memiliki SIM dan mampu mengendarai motor dan/atau mobil

Silakan kirim curriculum vitae selambat-lambatnya tanggal 12 September 2014 ke allya@rachel-house.org, atau kirim langsung ke Yayasan Rumah Rachel, Graha Indramas Lt. 1, Jl. K. S. Tubun Raya Kav. 77, Slipi, Jakarta 11410.

Home Care Nurse WANTED for Rachel House

Yayasan Rumah Rachel (YRR) adalah lembaga nirlaba, bukan berbasis agama yang menyelenggarakan asuhan paliatif rawat rumah, tidak berbayar, bagi anak-anak dengan HIV AIDS terutama dari latar keluarga kurang mampu. Visi kami adalah tidak ada lagi anak dalam nyeri atau kesakitan. Misi kami adalah memastikan asuhan paliatif tersedia bagi anak Indonesia sehingga mereka dapat menjalani hidup bahagia dan bermartabat dalam lingkungan penuh kasih sayang.

Mengimbangi peningkatan kebutuhan asuhan paliatif anak, Yayasan Rumah Rachel menyambut perawat Indonesia untuk bergabung  dalam tim PERAWAT PALIATIF RAWAT RUMAH. Sebagai lembaga perintis asuhan paliatif anak di Indonesia, Yayasan Rumah Rachel berkomitmen untuk terus membina kapasitas tim melalui proses belajar berkelanjutan melibatkan para penggiat dan guru paliatif dari Indonesia, Singapura, Australia, Selandia Baru, Afrika Selatan dan India.

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Berikut adalah rincian informasi Perawat Paliatif Rawat Rumah Yayasan Rumah Rachel.

Lokasi:
Kantor Slipi (Jakarta Barat) dan/atau Kantor Cilincing (Jakarta Utara).

Tanggung Jawab:
•    Menyelenggarakan asuhan keperawatan bermutu.
•    Menyelenggarakan pendidikan kesehatan dan komunikasi terapetik bagi klien dan keluarga.
•    Menyelenggarakan dukungan dasar psikologi sosial dan spiritual bagi klien dan keluarga selama terapi, jelang dan pasca kematian.
•    Berkoordinasi dengan lembaga mitra dan unit pelayanan kesehatan dalam menyelenggarakan asuhan bagi klien dan keluarga.

Persyaratan:
•    Berlatar pendidikan minimal D3 Keperawatan.
•    Berpengalaman kerja keperawatan klinis minimal tiga tahun. Pengalaman dalan layanan rawat rumah dan/atau anak menjadi nilai tambah.
•    Memiliki Surat Tanda Registrasi dan Surat Izin Praktik yang berlaku.
•    Memiliki kepekaan sosial dan bersedia melayani di lingkungan bersumber daya terbatas.
•    Memiliki daya menyesuaikan dan bertindak sesuai kondisi.
•    Berdaya pikir kritis.
•    Terampil berkomunikasi dengan beragam pihak.
•    Mampu mengoperasikan internet dan perangkat lunak dasar perkantoran.
•    Kemampuan berbahasa Inggris menjadi nilai tambah.
•    Mampu mengendarai motor dan/atau mobil serta memiliki SIM menjadi nilai tambah.

Silakan kirim curriculum vitae selambat-lambatnya tanggal 19 September 2014 ke allya@rachel-house.org, atau kirim langsung ke Yayasan Rumah Rachel, Graha Indramas Lt. 1, Jl. K. S. Tubun Raya Kav. 77, Slipi, Jakarta 11410.

Rachel House Fundraising: Cross Fit Event

What could be better than doing something wonderful for others while getting yourself in shape?

 

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Warming up

On March 22nd 2014, Crossfit Senayan organised a wonderful “R4R or Reps for Relief” fundraising event at the Sultan Hotel in Sudirman. Funds raised were for the benefit of Rachel House and Habitat for Humanity.

 

 

Cross Fit is a super ”crazy” new fitness trend that has taken spread across the world like wild-fire, involving teamwork and tenacity. The participants at the R4R event had to repeat each exercise set as many times (“reps” or repetitions) as possible within a certain timeframe.  It was a really fun and challenging workout, and an incredibly heartwarming day for all!

 

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Skipping into action

 

Fitness fanatics and first-time Cross Fitters signed up for the event ahead of time, asking friends and family to sponsor them depending on the number of repetitions they completed on the day itself.  The event was very well attended and everyone had a brilliant (if tiring!) time.  The money raised will help support the work or Rachel House and also Habitat for Humanity, which provides homes for families in need across Indonesia.

It’s not too late if you want to join in and donate! Just click the DONATE tab above . If you would like to find out more about our fundraising events, like us on Facebook or follow us on Twitter.

Want more? Check out our GET INVOLVED page.