Dr Christantie Effendy, PhD, a lecturer and researcher in the School of Nursing, Medical Faculty, Universitas Gadjah Mada, Yogyakarta, Indonesia, explains the background to a longer article published in the March/April issue of the European Journal of Palliative Care.
In 1992, I began my nursing career and by 1994 I was working as a clinical nurse on the oncology ward at Dr Sardjito Hospital, Yogyakarta. I became more focused on cancer patients’ care when I joined the Indonesian Cancer Foundation (ICF). As a clinical nurse, I had experienced that most patients came to hospital in an advanced stage of cancer. Moreover, I had lost my grandmother, my cousin, relatives and friends because of cancer. For these reasons, I wanted to contribute to better palliative care in Indonesia. In 2001, I started my career as a lecturer. Now, in 2015, I have just received my PhD on the topic ‘The quality of palliative care for patients with cancer in Indonesia’.
Provision of palliative care in Indonesia is still in its infancy and is currently only available in seven cities in the three major islands of Indonesia: Surabaya, Jakarta, Yogyakarta, Bandung, Semarang, Denpasar and Makassar. Referral systems between hospital and primary care centres and vice versa have not been well developed. As a result of this, more patients with cancer suffer unnecessarily because of a high burden of symptoms and unmet needs, and die at home with insufficient support from palliative care professionals.
Recognising that patients with cancer should be given treatment and care that is patient-centred, I investigated assessment of problems and needs of cancer patients in Indonesia.1 I also carried out research to identify whether the problems experienced by patients had been taken care of and who were the people involved in addressing the problems of patients (doctors, nurses, and/or family members). 2
Bearing in mind that the quality of palliative care is important, and in Indonesia there is no tool to evaluate such care, I carried out a face-validation of quality indicators (QIs) for the organisation of palliative care based on similar indicators developed in Europe, and piloted the Indonesian QIs in six hospitals in Indonesia. In the future, these QIs can be used to evaluate the organisation of palliative care in Indonesian hospitals. 3
In Indonesia, family caregivers are highly involved in caring for cancer patients.2 I therefore decided, together with colleagues at the School of Nursing, Universitas Gadjah Mada, to conduct research on ‘Basic Care Training’ (BCT) for family caregivers. We also produced a video and booklet about BCT to help train family caregivers.
All kinds of developments in the provision of palliative care have already started – but still a lot must be done. Doing more research in palliative care, providing training for healthcare providers to be competent to implement services, incorporating palliative care modules in medical and nursing curricula, and increasing public awareness of palliative care can contribute to better quality care. I hope that what I have achieved in clinical care, education and research, and what I will do in these fields, can also contribute to the development of palliative care and improve the quality of its provision in Indonesia.
1. Effendy C, Vissers K, Osse BH, et al. Comparison of problems and unmet needs of patients with advanced cancer in a European country and an Asian country. Pain Pract 2014 Mar 26. doi: 10.1111/papr.12196. (Epub ahead of print).
2.Effendy C, Vissers. K, Tejawinata S, et.al. Dealing with symptoms and issues of hospitalized patients with cancer in Indonesia: the role of families, nurses, and physicians. Pain Pract 2014 May 2. doi: 10.1111/papr.12203. (Epub ahead of print).
3. Effendy C, Visser K, Woitha K, et al. Face-validation of quality indicators for the organisation of palliative care in hospitals in Indonesia: a contribution to quality improvement. Supportive Care in Cancer, 2014. 22 (12):3301-10.
Read the full article in the European Journal of Palliative Care
This post relates to a longer article, ‘Palliative care in Indonesia’ by Christantie Effendy, Hana Rizmadewi Agustina, Martina Sinta Kristanti and Yvonne Engels, published in the March/April 2015 issue of the European Journal of Palliative Care (vol. 22.2). If you have a web-based subscription to the journal you’ll be able to download this issue, plus all articles in the journal archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online.
Are you coming to Copenhagen?
See you at the 14th World Congress of the European Association for Palliative Care – Copenhagen, Denmark, 8-10 May, 2015. Follow us on Twitter @EAPCOnlus – our official congress hashtag is #eapc2015
Veniți la Copenhaga?
Vă așteptăm să participați la cel de-al 14-lea Congres Mondial al Asociației Europene pentru Îngrijiri Paliative – Copenhaga, Danemarca, 8-10 Mai, 2015. Urmăriți-ne pe Twitter @EAPCOnlus – hashtag-ul official al congresului este #eapc2015
Hello suster. Sy sakit komplikasi pencernaan akibat empedu dibuang. Tiap hr skt. Bgm sy atasi ini? Apa paliatif care bs beri pethidine di rmh? Mahalkah? Sy di bdg..mhn info
hallo mba Yeli, terimakasih atas respon nya, mohon maaf baru sempat membalas. Kalau menurut saya mba Yeli bisa datang ke dokter bedah digestif (atau dokter yang melakukan pembedahan) untuk mendapatkan obat penghilang nyeri. Mohon maaf saya tidak tahu apa penyebab pengangkatan empedunya. Jika karena batu empedu maka itu bukan termasuk area paliatif. Mungkin mba Yeli perlu berobat ke dokter neurolog. semoga bermanfaat. Christantie
Halo Bu, apa ada rekomendasi dokter spesialisasi palliative di Bandung untuk penanganan kanker stadium lanjut?
Hi Ibu Christantie, salam kenal, saya Siska Natalia, sekarang sedang menempuh program magister di bidang palliative care di Stockholm, Swedi. Jikalau diperkenankan saya berkorespondensi dengan Ibu via email mengenai kebutuhan penelitian palliative di Indonesia. Terimakasih
Salam kenal Ibu Christantie.
Ayah saya penderita kanker prostat stadium 4. Psa pada saat awal di angka 500. Kemudian mengambil treatment herbal, diet, suntik hormon dan oral medicine selama kurang lbh 3 tahunan. Saat ini obat dikatakan sdh tdk efek dan psa terus naik sampai 7.500
dan sdh penyebaran ke tulang. Dokter menganjurkan mencoba obat chemo zytiga sebelum akhirnya chemo. Operasi tdk disarankan krn sdh berusia 78 thn. Zytiga harganya sangat mahal, 60 juta per bulan, dan tetap hanya akan menurunkan selama jangka waktu 4 sampai 6 bln menurut dokter. Pasien menolak pengobatan apapun dgn alasan umur sdh tua. Kami mencari palliative care di Bdg, tp belum mendapatkannya. Apakah ibu bs memberikan informasi? Dan kami tertarik unt mendapatkan buku ibu spy pasien dan keluarga siap mental dan dpt belajar bagaimana membantu pasien jika kondisi bertambah buruk. Kemana kami harus order dan berapa harganya?
Terima kasih unt perhatian ibu.