The Jakarta Post: Palliative care lends a helping hand

Careful: Nurse Susi conducts a medical check-up on patient Dea at Rachael House. (JP/Allison Hore)

By Allison Hore, Jakarta Post 

In a high-density neighborhood in North Jakarta, nurse Susi is visiting one of her patients. Dea, not her real name, is 18 months old and HIV positive.

At her young age, Dea has already had a serious bout of pneumonia, which left her with respiratory issues.

Dea lives in a one room apartment with her mother Rini (not her real name), who also has HIV, and her 8-year-old sister. They recently moved into the apartment, which, despite its small size, has running water — a big improvement from the conditions they were living in before.

Susi is satisfied that Dea’s health is improving. The bloating in her abdomen, a sign of severe malnutrition, has decreased and she is putting on weight. The symptoms of a severe ear infection are also disappearing. The little girl is starting to eat more solid foods and is building enough muscle in her legs to be able to stand when she has something to hold.

Rini supports her family by selling rambutan and powdered drink mixes but hopes when Dea’s condition stabilizes she’ll have the energy to return to work, doing laundry.

In her weekly visits, Susi monitors Dea’s and Rini’s conditions. She has been working at Rachel House, a nonprofit organization that specializes in children’s palliative care, for a decade now.

Palliative care is a healthcare approach to improve quality of life and limit suffering for people with serious illnesses by managing symptoms and pain. Rachel House works with children with advanced cancer, when treatment is no longer viable, and children living with HIV.

For Susi, it is not just about health care. Rachel House takes a holistic approach to palliative care — taking into account medical, social, economic and spiritual factors. “The basic concept of palliative care is how you can support the patient, how you can have kindness, empathy and compassion for patients,” she says.

Lynna Chandra, an investment banker, founded Rachel House in 2006 after the death of a friend to cancer. It was the first pediatric palliative care service in Indonesia.

In the beginning, she thought the solution was a building, with her plan to set up a 60-bed hospice. She soon realized her dream of “an Indonesia where people don’t have to live or die in pain” would not be that simple.

“What I didn’t realize back then was that pain management was not the practice and the whole mind-set needed to change,” explained Lynna, “My one-year target was way too simplistic.”

At the time, there was very little training in palliative care and only one doctor in Jakarta who specialized in it. Doctors in general hospitals were reluctant to provide pain management as they were afraid it would mask the cause of the pain.

She also acknowledged the socioeconomic factors at play, and the focus changed from in-patient to home care. “If we are to serve the poor, then home care is where we need to be because the families who earn very little in daily income can’t afford to keep their child in a hospital.”

The nurses of Rachel House get support from a network of community volunteers — an existing network of what they call “gossip women” in the community who know who is sick in their neighborhoods. This system soon started in a very informal way until Susi helped pilot the formal volunteer program in 2013.

Lynna said the collaboration is empowering for the volunteers. “It allows the women to have a social standing. They are very proud, and they feel needed.”

But there are challenges Rachel House faces, especially with HIV patients.

“Indonesia is currently one of the slowest improving countries when it comes to HIV, especially in the children’s sector,” says Lynna.

In 2012, the United Nations said the HIV epidemic in Indonesia was among the fastest expanding worldwide.

Cases like Dea’s and Rini’s are common in Asia. In 2016, there was only 19 percent treatment coverage for prevention of mother to child HIV transmission.

There is significant stigma around HIV and nurses aren’t exempted. An article in the Journal of Association of Nurses in AIDS said the level of HIV stigma among Indonesian nurses was “unacceptably high”.

Mothers of children with chronic conditions sometimes face shame from their families. “We’ve had many cases where the mother-in-law will say to the daughter-in-law it’s your fault your children are sick,” Lynna explains.

Dea’s grandmother was out of the picture until recently. But after encouragement from Susi, she helps pick up retroviral medications for Dea and Rini from local clinics.

Lynna believes the future of Rachel House is not scaling the organization to cover everyone, but rather to train professionals.

Susi trains staff at local hospitals and hopes the collaboration system between community volunteers, healthcare professionals and NGOs, like the one started by Rachel House, can be applied elsewhere.

“The government can look at the model from Rachel House and see how this palliative care ecosystem can be replicated in another area,” says Susi.

Lynna acknowledged that convincing the government may not be easy, but they would continue to campaign for change.

Read the original article here: by http://www.thejakartapost.com/life/2018/02/14/palliative-care-lends-a-helping-hand.html 

Rachel House named an international “Spark of Hope” as part of The Elders #WalkTogether campaign

We have been truly honoured by the decision of The Elders to name Rachel House as one of their #WalkTogether Sparks of Hope, in the recognition of our “inspirational work” in children’s palliative care.  The Elders are independent global leaders, brought together by Nelson Mandela, who offer their collective influence and experience to support peace building, help address major causes of human suffering and promote the shared interests of humanity. The #WalkTogetherCampaign celebrates and takes inspiration from the Freedoms that Nelson Mandela dedicated his life and work to: Freedoms for Peace, Health, Justice and Equality.  Read the full article below.

MANAGING PAIN AND PROVIDING CARE FOR CHILDREN LIVING WITH HIV AND CANCER

Palliative care is an essential part of any healthcare system. Pain and symptom management and a loving, safe environment are invaluable for people living with serious illnesses and their families, especially children. In Indonesia, however, palliative care is almost unheard of, meaning those living with chronic and terminal illnesses have very little access to the pain management and support that could make their lives more comfortable. There are an estimated 700,000 seriously ill children across Indonesia, but less than one percent currently have access to palliative care or pain relief.

Rachel House was established in 2006 as the first purpose-built children’s hospice in Indonesia. However soon after the unit began caring for terminally ill children, it become clear that after enduring years of pain and invasive treatments, what the children wanted the most was to go home and be close with their family and friends at the end of their lives. So the Rachel House nurses swapped their uniforms for helmets and began to travel the crowded streets of Jakarta to reach these children in their homes. Eleven years later, Rachel House has reached over 2700 children and families across greater Jakarta, and is recognised as the leading voice on children’s palliative care services in Indonesia.

In addition to providing direct care to seriously ill children and their families, Rachel House also provides palliative care training for medical professionals and equips local community volunteers with palliative care skills and knowledge. This is part of their broader mission to build a palliative care ecosystem across Indonesia, which can ensure accessible care and assistance for all in need so that no child will ever have to live or die in pain.

Susi joined Rachel house in 2008 and was part of the first team of nurses trained in palliative care in Indonesia. Amid the steaming heat, and monsoon rains, Susi packs her stethoscope and nurse kit, and heads off on her motorbike. Normally, Susi visits two or three patients a day, spending a few hours with each of them and their families. One of Susi’s typical patients is 9-year-old Rian*, in North Jakarta. He’s HIV positive and lives with his grandmother, his aunt, and her family. His mother died of AIDS four years ago, which isn’t uncommon among Susi’s patients. Susi helps Rian’s grandmother understand his medication schedule and pain management alongside providing essential comfort and support. Patients who don’t have access to anti-retroviral treatment to suppress the HIV virus persistently suffer from other infections, causing symptoms such as diarrhoea, fever, and coughing. This is tragically the case for most children living with HIV in Indonesia; only 17% have access to these life-saving anti-retroviral treatments. The average across the rest of Asia- Pacific is 47%. “Palliative care plays a big role from the point of diagnosis to the end of life.” Susi says. “It’s not only physical, but also emotional, social and spiritual.”

In Indonesia access to pain management is limited. For patients with terminal cancer, it is often vital. One of the cheapest and most effective painkillers recommended by the World Health Organisation is oral morphine. However it is difficult to access because a lot of healthcare professionals aren’t yet familiar with it or how to use it. The barriers to accessing painkillers are also bound up with the stigma surrounding narcotics – a stigma that is prevalent throughout Indonesia. Teaching families and health professionals about pain management is therefore a vital component of Rachel House’s work.

“While the scale of the challenge is enormous, our nurses, community volunteers and staff are passionate, committed and dedicated to provide care for those in need. Because every child, no matter their race, creed or illness, deserves to live free from pain and with joy and dignity,” said Rachel House founder Lynna Chandra.

Ms Chandra said that Rachel House was determined to build an Indonesia-wide palliative care eco-system. “To help nurture the spark of hope into a brightly burning flame of joy, we are determined to educate medical professionals across every part of Indonesia to provide palliative care – because no child should ever have to live or die in pain,” said Ms Chandra.

*Name changed

Read the original article on the WalkTogether.com website 

Job Vacancy: Come join our team as Communications and Fundraising Manager

Are you passionate about helping children in need? Do you want to help build a better Indonesia? Want to use your communications and/or fundraising skills for good? Then come join the team at Rachel House as our Communications and Fundraising Manager!

About Rachel House:

Founded in 2006, Rachel House has pioneered palliative care for seriously-ill children in Indonesia, driven by the belief that no child should ever have to live or die in pain. We provide home-based palliative care services to seriously-ill children with Cancer and HIV AIDS, free of charge. We also educate and equip medical professionals and local communities with palliative care skills and knowledge to provide care for those in need.

The Communications and Fundraising Manager will have a strong desire to contribute towards positive social change in Indonesia by supporting seriously-ill children live pain-free and with joy and dignity. They will lead communications with Rachel House’s diverse and expanding national and international audiences across multiple communications channels. Working closely with the CEO, they will also be responsible for the implementation of Rachel House’s fundraising strategy. They will work closely with our full-time Australian Communications Advisor, who is in-situ until August 2018

Main responsibilities include:

Communications

  • Communications coordination – Acting as the focal point for internal and external communications, you will work with colleagues from across Rachel House’s programs supporting their communication needs and identifying communications opportunities from their work.
  • Producing communication materials – Develop, update and maintain a wide range of communication materials including; press releases, articles and opinion pieces, presentations, newsletters, brochure and flyers.
  • Social Media – Manage our social media channels (Facebook, Instagram, Twitter, WhatsApp), developing and implementing social media strategies to increase engagement with our expanding online community.
  • Website – Maintain the Rachel House website, sourcing, producing and updating content on a regular basis.
  • Media management – Identify potential media opportunities and pitch to targeted outlets. Act as the liaison for all proactive and reactive media opportunities. Establish productive professional relationships with journalists across print, online, TV and radio outlets.
  • Stakeholder management – Reach out to a wide variety of stakeholders, ensuring their communication and information needs are met effectively by keeping them up-to-date about Rachel House’s vision, mission programs, goals, plans and progress.
  • Reporting – Report regularly on the implementation of Rachel House’s communication strategy and plan.

Fundraising

  • Fundraising focal point – Working closely with the CEO and Founder, implement the Rachel House fundraising strategy.
  • Business Development – Research fundraising opportunities and write grant applications to charitable trusts or statutory bodies
  • Build relationships with major donors or companies and make presentations
  • Organise fundraising campaigns and events
  • Recruit and organise volunteers
  • Support individual and team fundraising drive– Provide support, encouragement and practical assistance to individuals who would like to fundraise on behalf of Rachel House e.g. charity head shave, burpee challenge, 10k run.
  • Leverage online fundraising channels – Leverage and maintain online fundraising channels such as the Rachel House website, Global Giving and KitaBisa. Establish new campaigns/channels as required.
  • Reporting – Report regularly on the implementation of Rachel House’s fundraising strategy and plan.

Key Skills

  • Fluency in both Bahasa Indonesia and English, with impeccable grammar and spelling, is essential.
  • Willingness to learn and a passion for getting the job done to the highest standard.
  • Excellent written and verbal communication skills, with the ability to write for and communicate with various audiences.
  • Passion for, and expertise in, social and digital media.
  • A strong eye for design – experience with Canva, Photoshop or Illustrator is desirable.
  • Ability to handle a wide variety of tasks and projects concurrently, with the ability to (re)prioritize.
  • Excellent problem-solving skills.
  • Excellent networking skills.
  • Ability to work independently with minimal supervision.
  • Experience with online fundraising campaigns and platforms is desirable.
  • Communications campaigning and/or media management experience is desirable.
  • Some level of health knowledge, particularly around palliative care, would be a bonus.

Key Attributes

  • Strong desire to contribute towards positive social change in Indonesia
  • Motivated and driven to succeed
  • Enthusiastic, energetic and willing to take responsibility for ensuring a project’s success
  • Willingness to learn and to teach others
  • Excellent interpersonal skills and a team player
  • Diplomatic manner and ability to adapt to a range of cultures and experiences
  • Willingness to travel across Jakarta for work.

Qualifications and Experience

  • Bachelor’s degree in Public Relations, Communications, Journalism or related field
  • Three – five years’ experience in a related field (ie communications, journalism or fundraising)
  • Experience in implementing communication and/or fundraising strategies and plans

Even if you don’t have the requisite qualifications or experience, you could be the perfect person for the job. Formal education, qualifications and extensive experience matter less to us than your drive for excellence, your initiative and dedication to the role.

To apply, please send your curriculum vitae along with a cover letter by no later than February 16th to noviati@rachel-house.org. If you have any questions relating to this role or you would like to have a confidential discussion please email barry@rachel-house.org.

Rachel House Founder Addresses Salzburg Global Summit On Technology And Health

At the Salzburg Global Summit (l to R)  – Graham Adams, Lynna Chandra, Selina Brudnicki, and Toyin Ajayi

Rachel House founder Lynna Chandra was recently part of an innovative panel discussion the role of technology in healthcare at the Salzburg Global Seminar , which challenges current and future leaders to solve issues of global concern.

The below article was originally published on the Salzburg Global Seminar website as Building Healthy Communities – The Smart Utilization of Technology.

Participants started the third day at the Salzburg Global Summit by discussing how new technologies, or novel applications of older ones, can assist in transforming health services, as well as how these technologies can create a more open, connected and collaborative institutional culture of hospitals.

The session was led by Graham Adams, Toyin Ajayi, Selina Brudnicki, and Lynna Chandra. Each discussed ways in which technology can transform health.

Brudnicki said involving patients was key to developing effective tools to maintain patient data. To support this, she explained how the University Health Network, in Toronto, had managed to identify gaps in primary care by having patients look at their own medical information and point out inaccuracies.

Gauging on technology’s role, Ajayi, chief health officer of Cityblock Health, said when considering what she is trying to build, she asks herself whether technology can help at all. And although she does believe it can, now is not the time. “We have tools that are in place to record data and produce bills, but we need to produce full information of patients as people,” she said.

To produce said information, she said building care teams that are in place to create relationships with patients is necessary, saying, “We cannot think of technology as a replacement of humans in care, it should be an augmentation for people.”

“Why don’t we look at technologies that will bring down the hospital walls, rather than creating more barriers in the system?” said Chandra, co-founder of Absolute Impact Partners, highlighting how the system has lost people’s trust and technology should be used to rebuild it.

Adams, CEO of the South Carolina Office of Rural Health, told participants that when people talk about population health and the life of a community, we need to ask how to make sure we have a vehicle that allows everyone at a local level to have access to their information.

Participants heard and discussed the lack of linguistic fluency between clinicians, health systems, and technology developers. Ajayi argued that a solution would be common competency between clinicians and technologists.

Participants continued to discuss the relationship between health and technology among themselves. One participant said that A.I. and visual algorithms can help identify visible threats, but ultimately decisions should be made by someone who understands the patient and their context.

Cerita Suster Rina Dampingi Bocah Menyambut Maut

Awalnya dipublikasi oleh www.kumparan.com 
“Suster Rina, aku sebentar lagi meninggal, kan?” kata anak 13 tahun, penderita kanker otot stadium akhir.

Pertanyaan semacam itu kerap diajukan oleh pasien kepada Rina Wahyuni, perawat paliatif anak dari Yayasan Rumah Rachel (Rachel House).

Pertanyaan menyayat hati itu tak seberapa dibandingkan perasaan kehilangan yang ditelan Rina saat pasien ciliknya berpulang ke pangkuan Tuhan.

Suster Rina Wahyuni (Foto: Ridho Robby/kumparan)

Rina bersama Rachel House merawat anak penderita HIV/AIDS dan kanker dengan metode perawatan paliatif. Ini perawatan holistik (menyeluruh) untuk meningkatkan kualitas hidup anak dan orang tua, dengan fokus pada penanganan nyeri, psikososial, dan spiritual.

Setiap hari, Rina berhadapan dengan anak-anak pasien kanker yang umurnya tak lama lagi, atau dengan anak pengidap HIV/AIDS yang obat penyembuhnya belum ditemukan di dunia.

“Rata-rata pasien kanker yang dirujuk ke Rumah Rachel meninggal karena sudah terminal (tak bisa diobati),” kata Rina kepada kumparan di kantor Rachel House, Slipi, Jakarta Barat, Kamis (26/10).

Sedih memang, tapi kekuatan dan ketabahan Rina menjalani profesinya menjadikan dia penolong bagi banyak orang. Ia membantu para pasien dan keluarga mereka melewati masa-masa kritis dengan hati lapang.

Setiap pasien yang ia dampingi, ditemui Rina sepekan sekali guna melakukan pengecekan kesehatan menyeluruh. Tujuannya untuk mendeteksi bila terdapat gangguan kesehatan baru yang timbul, sekaligus memastikan tidak ada rasa nyeri dan luka yang terlampau mengganggu pasien ciliknya.

Rina juga harus memastikan psikis dan kehidupan sosial keluarga si anak tetap baik. Jika pasien ingin sekolah padahal ia sudah lama tak lagi sekolah karena waktunya habis untuk pengobatan, Rachel House akan mencarikan sekolah sekaligus menjelaskan mengenai kondisi si anak kepada pihak sekolah.

“Atau bila ingin belajar tapi tidak mau ke sekolah, kami akan ajak teman dari Rumah Rachel (ke rumahnya) untuk mengajak dia belajar, dan membacakan cerita untuknya,” kata Rina.

Lenah, Ibu Meriel bocah pengidap kanker darah. (Foto: Ridho Robby/kumparan)

Saat si anak bermain bersama relawan, Rina akan berusaha membangun kepercayaan orang tua, terutama ibu pasien, agar bersedia mencurahkan isi hatinya. Rina berusaha menjadi teman setia yang bersedia mendengar keluhan dan kecemasan sang ibu.

Setelah ibu pasien menaruh rasa percaya pada Rina dan mengeluarkan unek-uneknya, Rina akan bicara dari hati ke hati tentang kondisi terkini si anak.

“Kami akan jelaskan kondisi dan kemungkinan terburuk yang bisa terjadi pada anaknya apa. Tidak ada kan orang tua yang mau anaknya meninggal, makanya kami kasih edukasi dan support,” lanjut Rina. Memberi dukungan dengan mencurahkan kasih sayang kepada keluarga pasien merupakan hal dasar yang dilakukan dalam perawatan paliatif. Ini bisa membantu menjaga kondisi psikis anak dan orang tuanya.

Kasih sayang itu pula yang membuat kedatangan para perawat paliatif, termasuk Rina, amat dinanti pasien-pasien mereka. F misalnya, seorang pasien yang sangat dekat dengan Rina.

F bersikap terbuka dan senang menceritakan apapun kepada Rina. Menurut F, kunjungan sepekan sekali dari Rina sesungguhnya kurang untuk mencurahkan semua isi hatinya.

Maka untuk mengganti hari-hari tanpa Rina, F menceritakan curahan hatinya dalam sebuah buku harian yang ia buat khusus untuk Rina.

“Suster Rina, nanti ambil aja langsung (diary-nya) di situ, ya. Jangan bilang-bilang Mama,” kata Rina menirukan ucapan F kepadanya.

Dalam diary itu, F membagi perasaan dan harapannya. Ia juga menulis, sudah tahu kalau dia sakit kanker dan tidak bisa disembuhkan.

“Dia bilang, dia enggak takut meninggal. Tapi dia takut, nanti kalau dia meninggal mamanya gimana,” kata Rina.

Waktu itu mamanya sedang hamil anak kedua, dan bapaknya bekerja, berjualan, hingga larut malam.

Membaca curahan hati F, Rina segera mendiskusikannya dengan ibunda F. Hingga akhirnya sang ibunda meneguhkan hati untuk berkata kepada F, “Jangan takut, Mama enggak apa-apa. Nanti kan ada adek, dan kalau kangen kamu, Mama bisa kirim doa.”

Pada kesempatan selanjutnya, F bercerita dalam buku hariannya bahwa yang ia takutkan kali ini (lagi-lagi) bukan kematian, tapi kehidupan setelah kematian. F takut masuk neraka karena tak salat.

Rina cepat tanggap, dan mendatangkan guru agama untuk mengajari F salat dan mengaji. Membimbing agar batinnya tenang.

Lewat diary pula, Rina mengetahui permintaan terakhir F. F memohon kepada Rina untuk mengizinkannya tak meminum obat sesak napas karena efek obat itu membuat dia lebih sering tertidur, padahal ia ingin bermain dengan adiknya yang baru lahir.

“Aku enggak mau tidur terus, Sus. Nanti waktu aku main sama adek akan berkurang. Iya kalau aku hidup sampe besok, kalo enggak aku akan menyesal,” tutur Rina sembari menirukan gaya F.

Setelah permintaan tidak meminum obatnya dikabulkan, F selalu berada di dekat adik kecilnya.

Tulisan-tulisan dalam diary itu membantu Rina untuk bisa mengerti kebutuhan F. Tulisan itu juga menjadi sarana diskusi dan mendekatkan hubungan Rina dengan ibunda F. Mereka sudah seperti keluarga dekat bagi Rina.

Hingga kini, meski F telah tiada, keluarganya masih menjalin hubungan baik dengan Rina. Bahu-membahu merawat F telah mengikatkan hati mereka.

Sembilan tahun sudah Rina bergabung dengan Rachel House. Selama itu pula Rina harus siap setiap waktu untuk kehilangan pasien-pasien ciliknya.

Ia mendampingi mereka menyambut maut dengan senyum, menjadi kawan bagi keluarganya untuk mengantar kepergian dengan ikhlas dan damai.

Mencukur rambut Michelle untuk mendukung anak-anak dengan kanker dan HIV

“Stay strong, no matter what you look like, whether you have hair or not. You are beautiful. No matter who you are, you are loved. There’s people who support you and loved you.”

Kalimat di atas dikutip dari wawancara kami pada sebuah aksi sosial yang diadakan oleh Yayasan Rumah Rachel beberapa waktu lalu. Anda boleh percaya atau tidak, kalimat di atas diucapkan oleh seorang anak yang masih berusia belia. Saya tidak mempunyai padanan kata-kata yang tepat dalam bahasa Indonesia untuk menerjemahkannya. Begitu menyentuh dan mempunyai arti mendalam.

Michelle Marakasherry, 16 tahun, masih kanak-kanak ketika ia melihat neneknya mengerang kesakitan. Ia tak tahu penyakit apa yang diderita oleh neneknya. Hari demi hari dilihatnya tubuh sang nenek menjadi kurus, rambutnya rontok hingga tak tersisa. Suatu hari, sang nenek meregang nyawa, tak kuasa menahan sakitnya. Belakangan setelah Michelle beranjak remaja, ia baru mengetahui bahwa kepergian neneknya disebabkan oleh kanker, salah satu penyebab kematian tertinggi di dunia.

Michelle – sebulum dan sesudah

Mengenang hidup neneknya, Michelle terinspirasi untuk memotong habis rambutnya sebagai bentuk dukungan bagi mereka yang hidup dengan penyakit serupa.

“Ketika aku menceritakan keinginanku ini pada kedua orang tuaku, they were shocked and didn’t believe it. Mereka pikir aku main-main,” Michelle menjelaskan.

“Tetapi akhirnya mereka setuju dan malah mendukung aksi yang akan aku lakukan ini. Mereka bangga kepadaku,” imbuhnya.

Niat baik Michelle pun mendapat dukungan dari pihak sekolahnya, British School Jakarta. Walau umumnya murid perempuan tidak diperkenankan untuk menggundulkan kepala, pihak sekolah memberikan pengecualian bagi Michelle dengan mempertimbangkan dampak positif yang muncul dari aksi kepedulian sosial ini.

Rambut panjang nan indah itu perlahan dipotong dan helai demi helai terjatuh ke bumi. Beberapa orang menatap tak percaya, bahkan meneteskan air mata melihat aksi gadis belia ini. Beberapa orang lain menyemangati dan meneriakkan dukungan mereka bagi Michelle. Di sisi Michelle, papa dan mamanya tampak terharu. Usai pemotongan rambut Michelle, mereka tak berhenti memeluk dan memuji keberaniannya. Suatu keberanian yang perlu dicontoh oleh kita semua.

Memotong rambut Michelle

“Aku tidak merasa malu dengan kepalaku yang sekarang yang gundul, karena ini untuk tujuan yang baik. Ini bukan untuk mencari sensasi tetapi untuk mereka, orang-orang yang hidup dengan kanker,” katanya dengan senyum merekah.

Seperti Michelle, kita pun dapat menunjukkan kepedulian kita bagi mereka yang hidup dengan penyakit berat. Baik dengan menggunduli kepala maupun menjadi relawan bagi organisasi-organisasi sosial seperti Yayasan Rumah Rachel, kita semua bisa berperan aktif dalam meningkatkan kualitas hidup mereka.

Orang yang hidup dengan penyakit seperti kanker atau HIV bukanlah individu yang harus dijauhi atau dikucilkan. Mereka berhak untuk menikmati hidup yang berkualitas, dengan bahagia dan tanpa kesakitan, dikelilingi orang-orang yang mereka cintai.

Apa yang akan kita lakukan seandainya kita semua tahu bahwa esok adalah hari terakhir kita hidup di muka bumi ini?

Semua pergi – untuk tujuan yang layak!

Penulis: Yokhanan Prasetyono

Pelayanan Paliatif, bukan Sekadar Pengantar Kematian – Harian Nasional

Pelayanan Paliatif, bukan Sekadar Pengantar Kematian

 

JAKARTA (HN) -Kala itu 2012. Banjir parah terjadi di Jakarta. Salah seorang perawat pelayanan paliatif dari Yayasan Rachel House Susi Susilawati panik sekaligus waswas karena seorang anak berusia 7 tahun menunggunya untuk terapi.

“Ketika itu saya tidak mampu menerobos banjir. Ternyata ada anak yang menunggu kehadiran kami di tempat lain,” katanya ditemui HARIAN NASIONAL di kantor Rachel House, Jakarta, Kamis (2/11).

Momen itu sungguh menggugah hati Susi. Sebab, anak tersebut tetap menunggu kedatangannya di depan pintu rumah. Sebuah kejadian yang membuatnya selalu bersemangat menjalani hari-hari sebagai perawat layanan paliatif.

Pelayanan paliatif adalah metode dan pemberian bantuan kesehatan medis, mengurangi rasa nyeri, dan penanganan gejala sakit. Tujuannya, kualitas hidup pasien dan keluarga agar lebih baik. Selain itu, pelayanan paliatif membangun aspek psikologi, dukungan sosial, dan aspek spiritual penderita maupun keluarga penderita penyakit.

Sejak 2008, Susi berkecimpung di dunia tersebut yaitu memberikan bantuan medis dan psikologi pasien serta keluarga pasien. Berbagai macam kasus sudah dia temui, tapi kisah pada 2012 itu paling berkesan.

Rachel House berdiri sejak 2006 oleh Lina Chandra. Saat ini, yayasan tersebut memberikan pelayanan paliatif khusus anak-anak usia 0-18 tahun. Pendekatan yang dilakukan ialah holistik dengan memanfaatkan keluarga sebagai pelaku rawat dan lingkungan sekitar sebagai mitra. “Jadi teman-teman sesama tenaga kesehatan juga kami rangkul,” ujar CNPC Prorgam Manager Rachel House itu.

Rachel House adalah yayasan pemberi layanan paliatif pertama khusus bagi pasien anak. Tujuan utamanya, memberikan kualitas pasien pada hari-hari terakhirnya di dunia. Aspek yang menjadi penanganan pelayanan ini ialah memantau segala aspek medis pasien, terutama bagi penderita kanker yang biasanya akan mengalami rasa sakit luar biasa. Rachel House memberikan pelayanan medis sekaligus memfasilitasi peralatan kesehatan seperti tabung oksigen, kursi roda, sampai selang untuk kebutuhan makan pasien yang sudah kritis.

Menurut Susi, penderita kanker yang sudah kritis juga diberikan penanganan psikologis, terutama bagi keluarga. Keluarga diberikan pelatihan untuk bisa menangani pasien dan bersikap menghadapi kemungkinan terburuk yaitu kematian. “Mereka lebih butuh pendekatan emosional seperti mengobrol, bermain, dan belajar,” katanya.

Oleh karena itu, komunikasi lebih diintensifkan. Susi bercerita, pernah ada salah seorang pasien meminta untuk berkunjung ke Seaworld Ancol. Namun, dengan keterbatasan fisik, hal tersebut tentu tidak memungkinkan. “Akhirnya kami mendekorasi rumahnya seperti di Seaworld, termasuk membawa akuarium agar menyerupai Seaworld,” katanya. Langkah itu diambil agar pasien bisa mendapatkan progres mental lebih kuat.

Seluruh pasien Rachel House adalah yang sudah berpenyakit kronis. Artinya kematian merupakan kemungkinan yang akan terjadi cepat atau lambat. “Kami selalu memberikan pengertian terutama bagi keluarga. Kesiapan itu tentu kami lakukan baik untuk keluarga maupun pasien. Bahkan, kami pun harus siap juga agar pasien mampu menyikapi kematian tidak dalam kondisi stres atau ketakutan,” tutur Susi.

CEO Rachel House Kartika Kurniasari menginformasikan, sekitar 700 ribu anak membutuhkan pelayanan paliatif di Indonesia, tapi hanya satu persen penderita penyakit kritis yang ter-cover. Hal tersebut akibat belum banyak pihak menyediakan layanan paliatif khusus anak. “Ini yang menggerakkan kami terus berusaha,” katanya.

Tindakan yang dilakukan Rachel House adalah menyambangi pasien ke rumah sehingga perawatan medis dan psikologis pasien serta keluarga pasien lebih fleksibel dan nyaman. Hingga kini, 2.600 pasien sudah ditangani Rachel House. Sedangkan jumlah perawat Rachel House yang melayani kebutuhan pasien itu sebanyak tujuh orang.

Dalam praktiknya, Rachel House bekerja sama dan bermitra dengan rumah sakit milik pemerintah. Keterbatasan personel membuat jangkauan mereka masih sebatas di Jakarta. “Kami menyikapinya dengan memberikan pelatihan dan penyuluhan tentang penanganan paliatif ke komunitas, kampus, dan lembaga lainnya. Kami mencoba menyebarkan misi ini ke semua lini,” ujar dia.

Campur tangan pemerintah melalui rumah sakit daerah dinilai sudah baik. BPJS Kesehatan juga sudah cukup membantu dalam penanganan pasien terkait obat-obatan. Namun, menghadapi stigma masyarakat adalah hal yang perlu kembali digalakkan.

“Masih ada diskonsepsi di masyarakat. Masyarakat kebanyakan masih menganggap pelayanan paliatif untuk mengantarkan kepada kematian. Perlu ditegaskan, pelayanan paliatif bisa diberikan saat diagnosis pertama dikeluarkan. Jadi bukan hanya untuk pasien kritis,” tutur Kartika. Selain itu, hingga kini belum ada regulasi utuh yang mengatur pelayanan paliatif.

Reportase : Tegar Rizqon Alfian
http://m.harnas.co/2017/11/05/pelayanan-paliatif-bukan-sekadar-pengantar-kematian

Halloween Family Fun Party!

Halloween Family Fun day at Up in Smoke & One Eyed Jacks Jakarta, together with CrossFit 6621

Together with our dear friends Up In Smoke & One Eyed Jack Jakarta and Cross Fit 6621, we are delighted to invite you to our FAMILY HALLOWEEN PARTY, Sunday October 29th.

Dress in costume and bring your friends and family to what’s sure to be a fun and exciting event for all the family. We have lots of games and events planned for the day including:

* Crossfit Burpees Challenge Fundraiser
* Trick Or Treat
* Halloween Games
* Costume Parade
* Costume Competitions

Profits from the event will go to Rachel House – allowing us to continue supporting seriously-ill children and their families across Jakarta, and to educate medical professionals and local communities about palliative care.

Ticket sale please call or WhatsApp TIA : +62896 5254 3220

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Halloween Family Fun Party!

Dengan teman-teman Up In Smoke & One Eyed Jack Jakarta serta CrossFit 6221, kami mengundang kalian untuk menghadiri FAMILY HALLOWEEN PARTY hari Minggu, 29 Oktober.

Ayo kenakan kostummu serta ajak teman-temanmu dan keluarga ke acara seru ini, yang akan terdiri diri:

* Crossfit Burpees Challenge Fundraiser
* Trick Or Treat
* Halloween Games
* Costume Parade
* Costume Competitions

Dana yang terkumpul dari acara ini akan disalurkan ke Rachel House – agar kami bisa terus menyediakan dukungan bagi anak-anak yang hidup dengan penyakit berat beserta keluarganya di seluruh Jakarta, serta menyediakan pelatihan asuhan paliatif bagi tenaga kesehatan dan masyarakat.

Untuk pembelian tiket silakan telepon atau WhatsApp TIA: +62896 5254 3220