9/25/19

ISSUE,&EBPN&dan INOVASI&
terkait Perawatan Paliatif
dan
Terminal&Care

Dr.$Christantie$Effendy.,S.Kp.,M.Kes.$

Bahasan
• Konsep dasar dan lingkup Palliative2care
• Dasar hukum palliative2care2di2Indonesia
• ISSUE perawatan paliatif di2Indonesia
• Kebijakan palliative2care2di2Indonesia
• EBPN dalam perawatan paliatif dan terminal
• Tugas dan tanggung jawab perawat
• INOVASI&perawatan paliatif di2Indonesia

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Did2you2know?????

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"Palliative care is an urgent humanitarian

need worldwide for people living with
advanced stages of cancer, particularly in
developing countries, where a high proportion
of people with cancer are diagnosed when
treatment is no longer effective."

What2is2palliative2care?
An#approach# that#improves#the#quality#of#life# of#
patients#and#their#families# facing#the#problems#
associated#with#life9threatening# illness,#through#
the#prevention#and# relief#of#suffering# by#means#of#
early#identification# and#impeccable# assessment
and#treatment#of#pain#and# other#problems,#
physical,#psychosocial#and#spiritual
(WHO,#2002)

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Perawatan Paliatif (WHO, 2002)

! Meningkatkan kualitas hidup pasien dan keluarga

! Menganggap kematian adalah proses&yg normal
! Menghilangkan nyeri dan keluhan lain&
! Menjaga keseimbangan psikologis &&spiritual
! Memberikan dukungan pada pasien agar&tetap
aktif hingga akhir hayat

Palliative2Care2(WHO,2005)
• Perawatan(paliatif(merupakan(perawatan(
terintegrasi(yang(dapat(meningkatkan( kualitas(
hidup(pasien(dengan(cara(mengatasi(nyeri(
dan(gejala(yang(lain,(mendukung(pasien(
dalam(mengatasi(masalah(psikososial(dan(
spiritual sejak(diagnosa(ditegakkan( hingga(
akhir(hayat(pasien(serta(mendukung(keluarga(
yang(berkabung.

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Palliative2care
• Palliative2care2nursing2 is2very2much2about2 helping&
people&to&live&until&they&die,2not2about2helping2 them2
to2die2prematurely.2
• This2 is2not2merely2semantics,2 but2a2vital2and2integral2
part2of2palliative2 philosophy2 that2is2enshrined2 within2
the2very2simple2 statement2‘neither2 to2hasten2nor2
postpone2 death’2(WHO,2 2009).

Filosofi/Perawatan Paliatif

Meyakini bahwa setiap orang mempunyai

hak2atas dirinya,2hak2utk bebas dari2rasa2
nyeri dan2pemenuhan kebutuhan bioP
psikoPsosio dan2spiritual,2 serta meninggal
secara bermartabat.2

Asuhan2 Keperawatan 10

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Palliative&Care&Model

Death
Diagnosis/of/chronic/illness

Life=prolonging/ Care

Hospice
Chemotherapy
Radiation
Medications
Surgery
Dialysis
Palliative/ Care
Pain/management
Quality/of/life

Bereavement
Disease/Progression Care

PALLIATIVE2CARE

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Dasar Hukum:
• Kepmenkes No.604/Menkes/SK/IX/1989
tentang pengendalian penyakit kanker
nasional
• Kepmenkes No.812/Menkes/SK/VII/2007
Tentang Kebijakan Perawatan Paliatif
(Jakarta, Surabaya, Yogyakarta, Bali and
Makasar)

Who Provides Palliative Care

?
! Dilakukan secara kerja tim
! Interdisciplinary/group/of/
professionals

Quality$of$Palliative$care

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Pelaksana$perawatan$paliatif:
• Dokter
• Perawat
• Ahli&gizi
• Farmasis
• Psikologist
• Pekerja&sosial
• Tenaga&kesehatan&lainnya&dan
RELAWAN.&

Issue&………………

8
 !
JALANAN"MENUJU"KEMATIAN"(TRAJECTORY)OF)DEATH)"dan"INDIKATOR"
MATIAN"YANG"BAIK" 9/25/19
! pernyataan! National+ Institutes+ of+ Health+ (NIH)+ W+ StateWofWScience+
ce,! tidak! ada! definisi! ang! tepat! dari! tahap! akhir! hayat! dan! juga! ! kapan!
ematian! seseorang! dapat! diprediksi! secara! akurat1.! Ketika! kematian!
g! tidak! dapat! dihindari! dan! semakin! dekat,! proses! perjalanannya! dapat!
Perjalanan kematian pasien
Dbeda!berdasarkan!konteks!dan!riwayat!masa!lalu!seseorang2.!

an!kematian!pasien!
biasanya! mengikuti!
u! di! antara! empat!
mbar! 1),! yaitu:! 1)!
al! dengan! tibaD
kanker,! 3)! gagal!
dan! 4)! menurun!
bertahap!!
3!!
h)
!
!!!Gambar!1.!Perjalanan!(trajectory)!kematian!
pasien!di!UPI!

seluruh! pasien! memiliki! perasaan! takut! dalam! menghadapi! akhir! hayat,!

takut! kehilangan! kontrol,! kehilangan! martabat,! terputus! hubungan!
orang! lain,! kesakitan,! diabaikan! keluarga,! diabaikan! keinginannya,! mati!
n!atau!sengsara4.!! Apa yang2terjadi di2Indonesia??

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !
11!

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ISSUES
• Universal2 Health2 Coverage2 (UHC)
• Palliative2 care2 BELUM2 ditanggung BPJS
• Masyarakat belum paham tentang palliative
• Hospice2 tidak selaras dgn budaya di2 Indonesia
• Pasien berobat ke RS2setelah kondisi parah
• Fasilitas pelayanan bervariasi di2tiap daerah
• Kendala pelaksanaan Palliative2
• Nyeri masih menjadi masalah utama
• Kultur mempengaruhi implementasi palliative

Universal&Health&Coverage&(UHC)
• WHO&defined&that&UHC&means&that&all&people&
and&communities&can&use&the&promotive,&
preventive,&curative,&rehabilitative&and&
PALLIATIVE&health&services&they&need,&of&
sufficient&quality&to&be&effective,&while&also&
ensuring&that&the&use&of&these&services&does&
not&expose&the&user&to&financial&hardship.!&

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http://health.kompas.com/read/2011/12/17/0754173/85.Persen.Pasien.Kanker.dan.Keluarga.Bangkrut

Kondisi paliatif????
• Kondisi pasien yang2sudah tidak dapat
disembuhkan (kanker,( HIV/AIDS,(stroke,(COPD,(
hemodialisa,(dimensia,(dll)
• Mengalami banyak penderitaan (multiple(
suffering)
• Memerlukan dukungan bioPpsikoPsosioPspiritual
• Memerlukan dukungan keluarga
• Memerlukan peningkatan kualitas hidup

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Current2condition2in2Indonesia
• >60%2in2advanced2stage2of2cancer2(breast2
cancer2and2cervical2cancer)
! high2number2die2at2the2hospital
• Palliative2care2performed2only2in2big2cities
• Deficit2knowledge2of2Professional2about2
palliative2care2

Jenis perawatan paliatif

• Berbasis Rumah Sakit:&one&day&care,&
poliklinik,&rawat inap,&respite&care,&home&care
• Berbasis komunitas
• Hospice/&Home&Hospice
• Nursing&home

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Perawatan$paliatif
FISIK PSIKIS

SOSIAL SPIRITUAL

Di&&Indonesia:
• Hampir semua masalah pasien selama dirawat
di&RS&teratasi
(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)

Siapa yg membantu
pasien????
Universitas Gadjah Mada, Indonesia

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Keluarga mempunyai peranan yg besar dalam

mengatasi masalah pasien di&RS(2Effendy et2al.,2015)

The2Javanese2values
• temen (earnest),2
• rila (acceptance),2
• sabar (patient)2and2
• nrima (sincere)

Patients&needs
(Adriani,2RB2et2 al.,2013)

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BARRIER2HEALTH2PROFESSIONAL
• Belum ada standard2kesepakatan KAPAN2
seorang pasien BUTUH2PALLIATIVE2CARE
• Belum ada INDIKATOR2TERMINAL2CONDITION2
yang2disepakati bersama oleh dokter DPJP
• Belum ada Fasilitas standard2palliative2care
• Belum ada penggunaan OPIOID2yg efektif dlm
pain2management
• Belum ada indikator kualitas palliative2care2di2
setiap setting

Barriers in$palliative care

Knowledge,/attitude,/skills
(Groot,/Vernooij=Dassen et/al.,/Palliative/medicine,/2005)

Individual/professionals:/attitude,/behavioural
routines/(van/Riet Paap,Vernooij=Dassen,/Brouwer,/Vissers,/
Engels,/EAPC,/2013)
Lack/of/patient/and/family/acceptance/to/
discussion/of/hospice
(Boyd,/Merkh et/al./Oncol Nurse/Forum,/2011)

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BEDA2INDONESIA2VS2WESTERN
• Sistem kesehatan yang2berbeda (2Family2
Doctor)2
• Beda2mindset2terkait palliative2care
• Palliative2care2BELUM2MASUK2KURIKULUM
• Pasien kondisi paliatif belum dibiayai BPJS
• Autonomy2
• Asuransi kesehatan

TUJUAN&PALLIATIVE&CARE

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Meningkatkan QOL

Mengapa&butuh&Palliative Care?
Kebutuhan pasien paliatif:

• Bebas dari nyeri dan gejala yg lain

• Keluarga membutuhkan informasi yg jelas
ttg penyakit,2prognosa dan pilihan TERAPI2
• Dukungan Psychosocial,2spiritual
• Optimalisasi tahap perkembangan

Quality&of&Life High\quality&palliative&care

(Pantilat$et#al.,# 2015)

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Manusia makhluk sosial yang2unik

Mengalami Multiple2suffering

Membutuhkan personal2care

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Symptom management&is&the&key&&
for&optimalisation of&palliative&
care

INNOVATION…………

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Interpreting2in2 Palliative2 Care

August2 2011 39

KEBIJAKAN/ KEMENTERIAN/KESEHATAN//
TERKAIT UU KEPERAWATAN TENTANG///PRAKTEK///
MANDIRI///PERAWAT/

Direktorat$ Bina$Pelayanan$ Keperawatan$ dan$Keteknisian Medik

Ditjen$Bina$Upaya$ KesehatanMKemkes RI

Disampaikan/pada/Sosialisasi/Undang=undang Keperawatan
Ikatan/Rumah/Sakit/Jakarta Metropolitan
Jakarta,/28/Januari 2014 1

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Standard&of Palliative Care

End2of2life dan
INTEGRASI2 AWAL HOLISTIK
bereavment

BioPpsychoPsocioP
SEJAK&diagnosis spiritual2aspects

KUALITAS2DAN2
KUANTITAS2
SEIMBANG2SESUAI2 (Weaver/et.al,/2015)
KEBUTUHAN

UPAYA2APA2SAJA2YANG2DAPAT2
DILAKUKAN2OLEH2PERAWAT
• Menjadi bagian dari tim paliatif dan Mampu
bekerja secara tim
• Meningkatkan kompetensi di2bidang paliatif
• Menerapkan evidence2based2practice
• Melakukan penelitian dalam bidang paliatif
• Edukasi pasien dan keluarga

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PALLIATIVE$HOME$CARE

COMPREHENSIVE

ADL’S(&( SYMPTOMS#
COMFORT MANAGEMEN

Hospitalization HOME
CARE
SUPPORT# QUALITY
SYSTEM
OF#LIFE#
PATIENT&AND&FAMILY&
CENTERED&CARE

Bentuk praktek palliative&

homecare
ADVANCE$CARE$PLANNING

• Kerja TIM&Multidisiplin
• Supportive&care
• Pelayanan :&bio\psiko\socio\ Peningkatan$
spiritual\kultural kualitas$
• Pemberdayaan keluarga hidup
• Pendampingan berkelanjutan
• Fasilitas pendukung

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Pengaruh era&industri 4.0&pada

palliative&care

zaman Millennial
• yaitu zaman2di2mana2dunia bergerak sangat
cepat.2
• Dunia sedang memasuki era2Revolusi Industri
4.0,2yaitu periode perkembangan baru ketika
teknologi fisik,2teknologi digital2dan teknologi
biologis masingPmasing telah mencapai
perkembangan yang2belum pernah terjadi
sebelumnya pada bidangnya masingPmasing.

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Applications

Basic2Care2Training2for2Family2caregivers

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What2is2Evidenced2Based2Practice2
in2End2of2Life2Care????

Penerapan buktiPbukti Ilmiah yang2

ada pada tatanan praktek
perawatan pasien dengan kondisi
menjelang akhir hayat

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How2about2evidenced2in2End2of2Life2
care2in2Indonesia???

Pandangan Masyarakat
• TABOE2bicara tentang kematian
• Autonomy2 keluarga
• Decision2making2by2family
• Kultur/budaya terkait ‘ngopeni’2anggota
keluarga yang2sakit
• Berobat sampai titik darah penghabisan;2‘sak
pol9pole’,# ‘diusahake’#‘ndak mengko gelo’

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Perasaan pasien
• Hampir seluruh pasien memiliki perasaan
takut dalam menghadapi akhir hayat,2mereka
takut kehilangan kontrol,2kehilangan martabat,2
terputus hubungan dengan orang2lain,2
kesakitan,2diabaikan keluarga,2diabaikan
keinginannya,2mati sendirian atau sengsara

Evidenced2in2End2of2Life

• Dying2with2dignity2is2regarded2as2a2goal2of2quality2
endPofPlife2care.2(Guo,Jacelon.2014.Palliat2 Med2;28(7):931P940)
• There2is2little2agreement2about2what2constitutes2
good2death2or2successful2dying . (Meier2EA,2et.al.,2016.2Am2J2
Geriatr.Psychiatric.2 24(4):261P71)

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Evidenced2in2End2of2Life

• 112core2themes2of2good2 death2and2the2
top2three2themes2across2all2stakeholder2
groups2 were2preferences2for2dying2
process2(94%2of2reports),2 painPfree2status2
(81%),2 and2emotional2 wellPbeing2(64%).2
(Meier2EA,2et.al.,2016.2Am2J2Geriatr.Psychiatric.224(4):261P71)

112core2themes2of2good2death:2
1. preferences2for2a2specific2dying2process,
2. painPfree2status,
3. religiosity/spiritualty,2
4. emotional2wellPbeing,2
5. life2completion,2
6. treatment2preferences,2
7. dignity,2
8. family,2
9. quality2of2life,
10.relationship2with2HCP,2and2
11.other

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Good2Death
Principles&of&a&Good&Death
• To&have&access&to&spiritual&or&emotional&support&
• To&have&access&to&hospice&care&in&any&location
• To&have&control&over&who&is&present&and&shares&the&
end
• To&be&able&to&issue&advance&directives&which&ensure&
wishes&are&respected
• To&have&time&to&say&goodbye&and&control&the&timing
• To&be&able&to&leave&when&it&is&time&to&go,&and&not&have&
life&prolonged&pointlessly

R&Smith,&ed,&British&Med&J&320:129\30,&2000.

Caring2for2Dying2patients
• It2is2a2combination2of2knowledge,2skills2and2
compassion2in2equal2measure,2which2is2
sensitive,2hopeful,2meaningful2and2dynamic.2
Above2all,2it2is2a2way2of2thinking2and2an2
attitude2of2mind2that2should2influence2a2
nurse’s2behaviour whenever2they2work2with2a2
dying2person2in2whatever2setting2(Becker2et2al,2
2004)

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Quality$of$life$

KUALITAS&HIDUP&!

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Berani2gundul2utk2kanker

LOTUS/ CARE
KLINIK/LUKA,/HOMECARE/ DAN/ PALIATIF

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References
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. Suppor tive Care in
Cancer, 2014. 22(12):3301-10
4. Effendy, C, Visser K, Setiyarini S. Et.al. Family caregivers' involvement in caring for a hospitalized
patient with cancer and their quality of life in a country with strong family bonds. Psychooncology,
2014 Oct 7. doi: 10.1002/pon.3701. [Epub ahead of print]
5. Effendy, C, Agustina, H,R, Kristanti, M.S, Engels, Y., Nascent palliative care landscape Indonesia.
European Journal of Palliative Care. 2015; 22(2)
6. Ministry of Health Republic of Indonesia, Laporan Nasional Riset Kesehatan Dasar 2007 (National
Repor t of Basic Health Sur vey 2007), 2008, National Institute of Health Research and Development,
Ministry of Health, Republic of Indonesia: Jakar ta, Indonesia.
7. Ministry of Health Republic of Indonesia. Regulation No 812/Menkes/SK/VII/2007 on Palliative Care.
[cited 2010 20 November]; Available from: http://spiritia.or.id/Dok/skmenkes812707.pdf.

Universitas Gadjah Mada, Indonesia

References
Beth,2 M.2(2012).2Palliative( Care,(Concept(&(Practices:(Lessons(Learned(from(
U.S.A.(International2Nursing2 Conference:2Bandung
Canadian2Hospice2 Palliative2Care2Association.22013.2A(Model(to(Guide(Hospice(
Palliative( Care:(Based(on(National( Principles( and(Norms(of(Practise,(
Revised(and(Condensed(Edition:(2013.( Canadian2Hospice2 Palliative2Care2
Association:2Ottawa
Connor,2 SR.,2Bermedo,2 MCS. (2014).2Global2Atlas2of2Palliative2Care2at2The2End2
of2Life.2WHO:2Geneva
Matzo,2ML.,2Sherman,2DW.2(2010).2Palliative2Care2Nursing2Quality2Care2to2The2
End2of2Life.2Springer2 Pub:2New2York
National2 Council2 for2Palliative2Care.(2003).2Growth2 of2Palliative2Care.2
Retrieved2from2http://www.capc.org
Payne,2S.,Seymour,J.,Ingleton,2 C.2(2008).2Palliative( care(nursing(:(Principles( and(
evidence(for(practice( 2nd(ed.2Great2Britain2 by2Bell2 and2Bain2Ltd:2Glasgow
Soebadi,2RD.,2Tejawinata,2S.2(1996).2Indonesia:2Status2of2Cancer2 Pain2and2
Palliative2Care.2J2Pain2and2Symp Manag 122(2).

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[email protected]

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