ISSUES%TERKINI%

PERAWATAN%PALIATIF%DI%
BERBAGAI%NEGARA

Dr.$Christantie$Effendy.,S.Kp.,M.Kes
Global Atlas of Palliative
Care at the End of Life
Worldwide Palliative
Care Alliance
The Worldwide Palliative Care Alliance (WPCA)
is a global action network focusing exclusively on
hospice and palliative care development
worldwide. Its members are national and
regional hospice and palliative care organisations
and affiliate organisations supporting hospice
and palliative care.

https://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf

January 2014
 Palliative(care
• Why$is$palliative$care$a$human$rights$issue?
• What$are$the$main$diseases$requiring$palliative$
care?
• What$is$the$need$for$palliative$care?
• What$are$the$barriers$to$palliative$care?
• Where$is$palliative$care$currently$available?
• What$are$the$models$of$palliative$care$worldwide?
• What$resources$are$devoted$to$palliative$care?
• What$is$the$way$forward?$
Did$you$know?????
 Palliative(care(need
• The(need(for(palliative(care(has(never(been(
greater(and(is(increasing(at(a(rapid(pace(due(
to(the(world’s(ageing(population(and(increases(
in(cancer(and(other(noncommunicable(
diseases.(
 Palliative(care(
• Palliative(care(is(underdeveloped(in(most(of(the(
world,(and(outside(North(America,(Europe,(and(
Australia,(access(to(quality(palliative(care(is(very(
rare.(
• Palliative(care(is(expanding(in(the(developed(world(
in(spite(of(myths(and(misunderstanding(about(its(
nature(and(purpose,(but(is(only(beginning(to(be(
available(in(the(developing(world(where(it(is(
needed(most.(
 Palliative(care
• Since(the(early(1980s,(the(need(for(
palliative(care(for(cancer(patients(has(been(
progressively(acknowledged(worldwide.(
• However,(there(remains(a(huge(unmet(need(
for(palliative(care(for(these(chronic(lifeA
limiting(health(problems(in(most(parts(of(
the(world.(
 There%are%four%aspects
• palliative(care(is(needed(in(chronic(as(well(as(
life% threatening/limiting%conditions.3
• there3is3no3time3or3prognostic3limit3on3the3
delivery3of3palliative3care.%
• the3Global3Atlas3describes3the3need3for3
palliative3care3at3all3levels3of3care.
• palliative3care3is3not3limited3to3any3one3care3
setting3
Palliative(care(is(needed(in(chronic(as(well(as
life2 threatening/limiting2conditions.(

• Adults'with'a'wide'range'of'chronic'conditions'
throughout'the'world'have'been'recognised'
as'benefiting'from'palliative'care.'
• Early'intervention,'well'before'the'terminal'
stage,'''is'recognised'as'optimal
• The$WHO$definition$of$palliative$care$for$
children$states$that$palliative$care$should$be$
provided$to$children$with$chronic$and$life8
limiting$illness,$not$only$those$who$are$dying.$
• Paediatric$palliative$care$begins$when$the$
illness$is$diagnosed,$and$continues$regardless$
of$whether$or$not$a$child$receives$treatment$
directed$at$the$disease.$
 There%is%no%time%or%prognostic%limit%
on%the%delivery%of%palliative%care.#

• It#has#been#widely#advocated#that#palliative#care#
should#be#delivered#on#the#basis#of#need,#not#
diagnosis#or#prognosis
• Although#we#have#estimated#numbers#based#on#
mortality#data#for#consistency,#palliative#care#should#
be#provided#‘early#in#the#course#of#the#illness’#(WHO#
definition#of#palliative#care)#and#at#least#as#many#
people#are#estimated#to#have#palliative#care#needs#
before#the#last#year#of#life#as#during#the#last#year#of#
life.#
The$Global$Atlas$describes$the$need$for$palliative$
care$at$all$levels$of$care.

• Palliative(care(is(not(limited(to(specialist(
palliative(care(services(but(includes(primary(
and(secondary(level(care.(
Palliative(care(is(provided(at(three(different(
levels:
• i)#through#a#‘palliative#care#approach’#adopted#by#
all#healthcare#professionals,#provided#they#are#
educated#and#skilled#through#appropriate#training
• ii)#‘general#palliative#care’#provided#by#primary#care#
professionals#and#those#treating#patients#with#life<
threatening#diseases,#with#a#good#basic#knowledge#
of#palliative#care,#
• iii)#‘specialist#palliative#care’#provided#by#specialised#
teams#for#patients#with#complex#problems.
Palliative(care(is(not(limited(to(any(one(care(
setting(

• Palliative(care(is(provided(wherever(a(person’s(
care(takes(place,(whether(this(is(the(patient’s(
own(home,(a(care(facility,(hospice(in8 patient(
unit,(hospital,(or(outpatient(or(day(care(
service.(
e global
gions of
d of
nd of life

World&map&showing&the&global&distribution&by&WHO&regions&of&
rates&for&people&in&need&of&palliative&care&at&the&end&of&life&
https://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf
Estimates of adults in need of palliative care at the
end of life
lts in need
t the end of
ups

N = 19,228,760

Distribution*of*adults*in*need*of*palliative*care*at*the*end*of*
lts in need life*by*disease*groups*
t the end of
ease groups
 congenital anomalies, followed by neonatal conditions, protein energy
malnutrition, meningitis, HIV/AIDS and cardiovascular diseases (Fig. 17).

dren in
are at the
se groups

* see excluded conditions Appendix 6

N = 1,170,011

The African Region concentrates the majority of children in need of

Distribution*of*children*in*need*of*palliative*care*
palliativeat*the*end*of*life*by*disease*groups*
care (49%), followed by the Southeast Asia (24%) and Eastern
Mediterranean regions (12%) (Fig. 18). The African Region has the
highest rate (160) followed by the Eastern Mediterranean (68) and
"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."
 What%is%palliative%care?
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)
 Palliative(Care((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.
 Palliative(care
• Palliative(care(nursing(is(very(much(about(helping(
people(to(live(until(they(die,(not(about(helping(them(
to(die(prematurely.(
• This(is(not(merely(semantics,(but(a(vital(and(integral(
part(of(palliative(philosophy(that(is(enshrined(within(
the(very(simple(statement(‘neither(to(hasten(nor(
postpone(death’((WHO,(2009).
 Palliative(care
• offers(a(support(system(to(help(the(family(cope(during(
the(patients(illness(and(in(their(own(bereavement;
uses(a(team(approach(to(address(the(needs(of(patients(
and(their(families,(including(bereavement(counselling,(
if(indicated;(will(enhance(quality(of(life,(and(may(also(
positively(influence(the(course(of(illness;
is(applicable(early(in(the(course(of(illness,(in(
conjunction(with(other(therapies(that(are(intended(to(
prolong(life,(such(as(chemotherapy(or(radiation(
therapy,(and(includes(those(investigations(needed(to(
better(understand(and(manage(distressing(clinical(
complications.(
 Filosofi'Perawatan Paliatif

Meyakini bahwa setiap orang mempunyai

hak'atas dirinya,'hak'utk bebas dari'rasa'
nyeri dan'pemenuhan kebutuhan bio:
psiko:sosio dan'spiritual,'serta meninggal
secara bermartabat.'

Asuhan'Keperawatan 25
Old$and$New$model$of$PC
Mengapa'butuh'Palliative Care?
Kebutuhan pasien paliatif:

• Bebas dari nyeri dan gejala yg lain

• Keluarga membutuhkan informasi yg jelas
ttg penyakit,8prognosa dan pilihan TERAPI8
• Dukungan Psychosocial,8spiritual
• Optimalisasi tahap perkembangan

Quality'of'Life High<quality'palliative'care

(Pantilat(et#al.,#2015)
 Prinsip dasar perawatan paliatif
1. Menerima kematian sebagai proses6alamiah dari
akhir kehidupan
2. Tidak memperpendek hidup atau
memperpanjang proses6menuju akhir hayat
3. Selalu memprioritaskan kepentingan yang6
terbaik bagi pasien
4. Menolak kesia@siaan (futility)6pada diagnostik
dan terapi
5. Menjamin QOL6dan EOL
 Kondisi paliatif????
• Kondisi pasien yang,sudah tidak dapat
disembuhkan (kanker,(HIV/AIDS,(stroke,(COPD,(
hemodialisa,(dimensia,(dll)
• Mengalami banyak penderitaan (multiple(
suffering)
• Memerlukan dukungan bio7psiko7sosio7spiritual
• Memerlukan dukungan keluarga
• Memerlukan peningkatan kualitas hidup
 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)
• Draft Permenkes th 2019 tentang Paliatif
 Jenis perawatan paliatif
• Berbasis Rumah Sakit:6one6day6care,6
poliklinik,6rawat inap,6respite6care,6home6care
• Berbasis komunitas
• Hospice/6Home6Hospice
• Nursing6home
 Pelayanan'Paliatif'YAD
(draft'Permenkes,'2019'ttg'Paliatif)

• RUMAH'SAKIT
• KLINIK'PRATAMA
• KLINIK'UTAMA
• RUMAH'PALIATIF'FFFFFF dibawah Puskesmas
• RUMAH'PASIEN
Who Provides Palliative Care
?
! Dilakukan secara kerja tim
! Interdisciplinary4group4of4
professionals

Quality4of4Palliative4care
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.!*
Meningkatkan QOL
 UPAYA%APA%SAJA%YANG%DAPAT%
DILAKUKAN%OLEH%PERAWAT
• Menjadi bagian dari tim paliatif dan Mampu
bekerja secara tim
• Meningkatkan kompetensi di%bidang paliatif
• Menerapkan evidence%based%practice
• Melakukan penelitian dalam bidang paliatif
• Edukasi pasien dan keluarga
Applications
Vloggers(share(cancer(journey
Tindak'lanjut
RESEARCH ARTICLE Open Access

Trends in descriptions of palliative care in

the cancer clinical practice guidelines
before and after enactment of the Cancer
Control Act (2007): content analysis
Miwa Hinata1,2, Kikuko Miyazaki2*, Natsuko Kanazawa2,3, Kumiko Kito2,4, Sachiko Kiyoto5, Manako Konda2,6,
Akira Kuriyama2, Hiroko Mori2,7, Sachiko Nakaoka2, Akiko Okumura2,8, Hironobu Tokumasu9 and Takeo Nakayama2

Abstract
Background: Palliative care was a priority issue in the Cancer Control Act enacted in 2007 in Japan, and this has
resulted in efforts being made toward educational goals in clinical settings. An investigation of how descriptions of
palliative care for the treatment of cancer have changed in clinical practice guidelines (CPGs) could be expected to
provide a better understanding of palliative care-related decision-making. This study aimed to identify trends in
descriptions of palliative care in cancer CPGs in Japan before and after enactment of the Cancer Control Act.
Methods: Content analysis was used to count the lines in all relevant CPGs. We then compared the number of
lines and the proportion of descriptions mentioning palliative care at two time points: the first survey (selection
period: February to June 2007) and the second survey (selection period: February to December 2015). Descriptions
from the CPGs were independently selected from the Toho University Medical Media Center and Medical
Information Network Distribution Service databases, and subsequently reviewed, by two investigators.
Results: Descriptions were analyzed for 10 types of cancer. The proportion of descriptions in the first survey
(4.4%; 933/21,344 lines) was similar to that in the second survey (4.5%; 1325/29,269 lines).
Conclusions: After the enactment of the Cancer Control Act, an increase was observed in the number, but not in
the proportion, of palliative care descriptions in Japanese cancer CPGs. In the future, CPGs can be expected to play
a major role in helping cancer patients to incorporate palliative care more smoothly.
Keywords: Palliative care, Cancer clinical practice guideline, Cancer control act [2007], Content analysis, Qualitative
research

Background Ministry of Health, Labour and Welfare in Japan, [3]

According to the Institute of Medicine in the United the development of CPGs began to increase in 1999 [4].
 A"Story"of"cancer"patient
• When"Tori"Geib learned"she"had"terminal"metastatic"
breast"cancer"in"2016"on"the"week"of"her"30th"
birthday,"she"was"automatically"booked"to"see"a"
palliative"care"coach"at"Ohio"State"University"
Comprehensive"Cancer"Center"in"Columbus.
“The&biggest&thing&initially&is&that&you’re&dealing&with&grieving&
this&life&you&just&lost&and&the&idea&of&what&your&life&would&be&like.&
Your&peers&don’t&understand.&I&had&to&quit&my&job&as&a&chef&two&
years&out&of&school,”&says&Geib,&of&Bellefontaine,&Ohio.&“When&I&
learned&my&cancer&wasn’t&curable,&I&just&communicated&to&my&
palliative&care&doctor,&‘If$I$don’t$live$long,$I$want$to$make$sure$
I$live$my$best$life.’ ”
https://www.washingtonpost.com/national/healthIscience/aIrisingItrendIinIcancerIcareItargetsIphysicalI
existentialIthreatsIpatientsIconfront/2019/05/03/3ed67ef6I5bc5I11e9Ia00eI050dc7b82693_story.html
 Trends'PC'in'USA
• Bring'true,'patient5directed,'palliative'care'
into'the'community,'meeting'individuals'
where'they'are'on'their'personal'healthcare'
journey.
Palliative)care)in)US)hospitals)has)risen)steadily)over)the)past)16)years,)
with)more)than)three:quarters)of)the)nation’s)hospitals)and)health)
systems)offering)programs
 The$United$States
• Community) based/hospice/nurses/typically/
have/specialized/training/in/palliative/care./
• Physicians/and/nurses/have/advanced/training/
to/provide/care/for/those/who/are/dying/from/
a/life)limiting/illness./
 Palliative(care(in(USA
• compassionately(treating(those(with(chronic,(
life9limiting(illnesses(according(to(their(
individual(priorities(and(life(goals(
• can(be(empowering(for(people(and(
significantly(increase(quality(of(life(at(the(end(
of(life

https://www.crossroadshospice.com/hospice2palliative2care2
blog/2018/december/27/trends2in2palliative2care2looking2ahead2to22019/
 Canada%
• Canadian%homecare%nurses%are%generalists,%
occasionally%seeing%patients%who%receive%care%
with%an%end7of7life%intent;%
• some%nurses%may%have%additional%interest%or%
training%in%palliative%care,%but%this%is%not%
required,%standardized,%or%commonplace.%
 United'Kingdom
• End$of$life*community*homecare*nursing*can*
be*provided*by*specialized*nurses,*such*as*
Marie*Curie*nurses*or*Macmillan*nurses*with*
palliative*care*training.*
• The*homecare*model*is*similar*in*other*
European*countries*and*Australia
• Policymakers-still-require-evidence-of-how-
best-to-use-homecare-nursing-to-effectively-
shift-end9of9life-care-from-hospitals-to-home9
based-settings.-In-particular,-the-evidence-is-
lacking-for-the-effectiveness-of-generalist-
homecare-nurses-in-providing-palliative-care,-
who-are-far-more-common-in-the-health-
system.-

(Seow Hsien,-Sutradhar Rinku,-McGrail Kim,-Fassbender Konrad,-Pataky Reka,-Lawson-

Beverley,-Sussman Jonathan,-Burge-Fred,-and-Barbera Lisa.-Journal-of-Palliative-
Medicine.-February-2016,-19(3):-2639270.-doi:10.1089/jpm.2015.0229.)
 INT
IGHT FOUNDATIONS
IRLANDIA EX
CA
egular,
ed care PO
aim of

MO
upport,

NEE
ty and
ve care
PAT
ts with
GU
oviders
of care
QI

munity,
WO
place.
ICT
vision.
alue of ME
FU

Figure 1. Eight Foundations

IM
OT
IM
 What are the main barriers to
palliative care development?

August&2011 Interpreting&in&Palliative&Care 56
 Barriers'
• Policy
• Education
• Medication/available
• Psychological,/social,/cultural,/and/financial/
barriers/
• Implementation/
TRENDS'AND'ISSUES'DI'
INDONESIA'????
http://health.kompas.com/read/2011/12/17/0754173/85.Persen.Pasien.Kanker.dan.Keluarga.Bangkrut
 Current'condition'in'Indonesia
• >60%'in'advanced'stage'of'cancer'(breast'
cancer'and'cervical'cancer)
! high'number'die'at'the'hospital
• Palliative'care'performed'only'in'big'cities
• Deficit'knowledge'of'Professional'about'
palliative'care'
 Patient'Centered+Care+(PCC)
Advanced(
cancer(patients QIs
Multiple(suffering

Identify(problems(and(
Quality(of(Life
needs

Unique'and'specific

Addressing)
Problems)and)needs)
 Top ten problems and needs of patient with advanced
cancer in Indonesia (n=180)
(Effendy C,"Vissers"K,"Osse BH,Tejawinata S,"VernooijCDassen"M,"Engels"Y.Pain"Pract."2015)

Sub domain Problems % Needs % *

Extra expenditures because of the disease (1) 79.4 72.0
Loss of income because of the disease (2) 71.7 67.4
Pain (3) 71.1 66.4
Fatigue (4) 66.7 60.0
Body care, washing, dressing or toilet (5) 53.9 58.8
Sleeping problem(6) 53.3 65.6
Experiencing loss of control over one’s life (7) 50.6 69.2
Fear of physical suffering and the disease (8) 50.0 65.6
Difficulty coping with the unpredictability of the future (9) 48.3 81.6
Being dependant of others (10) 47.8 59.3
*"N"Vary""based"on"patients"who"experienced"problems

("Effendy"C,"Vissers K,"Osse BH,"et"al.,"2014")

Universitas Gadjah Mada, Indonesia
(Effendy C, Vissers K, Sunaryadi T, Vernooij-Dassen, Engels Y, Pain Practice.2014)

Universitas Gadjah Mada, Indonesia

Example of a useful quality indicator

• There are facilities for a relative to stay overnight

(Effendy(C,et al(Supportive care(cancer 2014:(22(12):3301>3310)
Psycho-Oncology
Psycho-Oncology (2014)
Published online in Wiley Online Library (wileyonlinelibrary.com). DOI: 10.1002/pon.3701

Family caregivers’ involvement in caring for a hospitalized

patient with cancer and their quality of life in a country with
strong family bonds
Christantie Effendy1,2, Myrra Vernooij-Dassen2,5*, Sri Setiyarini1, Martina Sinta Kristanti1, Sunaryadi Tejawinata4,
Kris Vissers3 and Yvonne Engels3
1
School of Nursing, Medical Faculty, Universitas Gadjah Mada, Yogyakarta, Indonesia
2
Scientific Institute for Quality of Healthcare, Radboudumc, Nijmegen, the Netherlands
3
Department of Anesthesiology, Pain and Palliative Medicine, Radboudumc, Nijmegen, the Netherlands
4
Center of Development for Palliative and Pain Relief, Dr. Soetomo Hospital, Surabaya, Indonesia
5
Kalorama Foundation, Beek-Ubbergen, the Netherlands
*Correspondence to: Abstract
Scientific Institute for Quality of
Healthcare (IQ Healthcare), Background: Being involved in caring for family members during illness is part of the Indonesian
Radboud University Medical culture, even during hospitalization. It is unknown which factors influence the quality of life (QoL)
centre, Nijmegen, the of family members taking care of their loved ones. The present study aims to identify factors influenc-
Kristanti et al. BMC Palliative Care (2017) 16:4
DOI 10.1186/s12904-016-0178-4

RES EAR CH ARTICLE Open Access

Enhancing the quality of life for palliative

care cancer patients in Indonesia through
family caregivers: a pilot study of basic
skills training
Martina Sinta Kristanti*, Sri Setiyarini and Christantie Effendy

Abstract
Background: Palliative care in Indonesia is problematic because of cultural and socio-economic factors. Family in
Indonesia is an integral part of caregiving process in inpatient and outpatient settings. However, most families are
 International*Psychogeriatrics
International Psychogeriatrics: page 1 of 12 © International Psychogeriatric Association 2017. This is an Open Access article distributed under the terms of the Creative Commons
Attribution licence (http://creativecommons.org/licences/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is
properly cited.
doi:10.1017/S1041610217001508

Comparison of the lived experiences of family caregivers of

patients with dementia and of patients with cancer in
Indonesia
...........................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................

Martina Sinta Kristanti,1,2 Yvonne Engels,3 Christantie Effendy,2 Astuti,4 Adi Utarini5
and Myrra Vernooij-Dassen1,2
1
IQ Healthcare, Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, The Netherlands
2
School of Nursing, Faculty of Medicine, Universitas Gadjah Mada, Yogyakarta, Indonesia
3
Department of Anesthesiology, Pain and Palliative Care, Radboud University Medical Center, Nijmegen, The Netherlands
4
Neurology Department, Sardjito Hospital, Yogyakarta, Indonesia
5
Public Health and Policy Department, Faculty of Medicine, Universitas Gadjah Mada, Yogyakarta, Indonesia

ABSTRACT
 Sari, I.W.W., et al. Belitung Nursing Journal. 2018 June;4(3):295-303
Accepted: 19 June 2018
http://belitungraya.org/BRP/index.php/bnj/

© 2018 Belitung Nursing Journal

This is an Open Access article distributed under the terms of the Creative Commons Attribution 4.0 International License which permits
unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.

ORIGINAL RESEARCH ISSN: 2477-4073

BURDEN AMONG FAMILY CAREGIVERS OF ADVANCED-

CANCER PATIENTS IN INDONESIA
Ike Wuri Winahyu Sari1*, Sri Warsini2, Christantie Effendy 3
1
Department of Medical Surgical Nursing, Faculty of Health Science, Universitas Jenderal Achmad Yani Yogyakarta,
Yogyakarta, Indonesia
2
Department of Community and Mental Health Nursing, Faculty of Medicine, Universitas Gadjah Mada, Yogyakarta,
Indonesia
3
Department of Medical Surgical Nursing, Faculty of Medicine, Universitas Gadjah Mada, Yogyakarta, Indonesia

*Correspondence:
Ike Wuri Winahyu Sari
School of Nursing, Faculty of Health Science, Universitas Jenderal Achmad Yani Yogyakarta, Yogyakarta, Indonesia
Jalan Brawijaya, Ring Road Barat, Ambarketawang, Gamping, Sleman, Yogyakarta, 55294; Phone: +62-274-4342000
Symptom management+is+the+key++
for+optimalisation of+palliative+
care
 Indonesia) The)
Netherlands
Problems) Pain 71% 67%
Fatigue) 66% 92%
Psychological 25?50% 53?86%
Financial 70?80% 30?42%

Needs)for)more) All)problems >54% <35%

professional))attention
Effendy'C,'Vissers'K,'Osse BH,'Tejawinata S,'Vernooij9Dassen'M,'Engels'Y.Pain'Pract.'2015
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
Keluarga mempunyai peranan yg besar dalam
mengatasi masalah pasien di2RS("Effendy et"al.,2015)
The$Javanese$values
• temen (earnest),$
• rila (acceptance),$
• sabar (patient)$and$
• nrima (sincere)

Patients(needs
(Adriani,$RB$et$al.,2013)
Pelayanan Paliatif Surabaya
 IMPORTANT)POINTS

• The)key)is)not)about)how)long)you)
spent)interacting)with)a)patient,)but)
how$you$used$the$time$you$had$with$
them.$
• As)nurses)we)need)to)promote)a)
patients)psychological)and)emotional)
wellbeing)in)order)to)facilitate)physical)
healing.)
 TRENDS'AND'ISSUES'DI'DUNIA
• Communication'in'Advance'Care'Planning
• Palliative'Care'in'ICUs'&'emergency'rooms
• The'Challenges'in'End'of'Life'Care
• Psychosocial'issues'of'family'in'palliative'care
• Complementary'and'Alternative'Medicine
• Electronic'patient’s'reported'outcomes'in'PC
• Share'decision'making
• Minority'group
• People'with'mental'disability''
 Where tive care is often difficult. However, knowl- dis
should I edge of palliative and hospice care provides tipl
start? an essential component of practice that can and
help patients attain a comfortable end of L
life. bec
In a society that’s focused on extending Som
life, nurses need to take a step back and look wh
I"like"to"learn"more"
at the dying patient holistically. Is the patient erb
comfortable? Will the treatment, interven- lon
about"palliative"care"
tion, or medication provide him with an you
so……"I"can"be"well"
increased quality of life? What’s the patient’s
emotional state? Is this really the treatment
tor
car
informed"for"my"
he wants and does he fully understand the K
options? And, most importantly, have you mo
patients."
discussed with him advance directives? pat
Where"sshould I"
Palliative and hospice care are actually
two similar programs with a philosophy
hos
the
start???
of holistic caring: to e
• Palliative care is the umbrella term for ava
comfort care, which covers patients at any pro
stage of illness. Although care is comfort N
centered, it allows patients to receive cura- pat
tive treatments. This includes aggressive tial
HOW$
CARE$
ARE$YOU$
????
CARING'WITH'LOVE
Quality(of(life(
 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. Supportive 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
Report of Basic Health Survey 2007), 2008, National Institute of Health Research and Development,
Ministry of Health, Republic of Indonesia: Jakarta, 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,&M.&(2012).&Palliative(Care,(Concept(&(Practices:(Lessons(Learned(from(
U.S.A.(International&Nursing&Conference:&Bandung
Canadian&Hospice&Palliative&Care&Association.&2013.&A(Model(to(Guide(Hospice(
Palliative(Care:(Based(on(National(Principles(and(Norms(of(Practise,(
Revised(and(Condensed(Edition:(2013.( Canadian&Hospice&Palliative&Care&
Association:&Ottawa
Connor,&SR.,&Bermedo,&MCS. (2014).&Global&Atlas&of&Palliative&Care&at&The&End&
of&Life.&WHO:&Geneva
Matzo,&ML.,&Sherman,&DW.&(2010).&Palliative&Care&Nursing&Quality&Care&to&The&
End&of&Life.&Springer&Pub:&New&York
National&Council&for&Palliative&Care.(2003).&Growth&of&Palliative&Care.&
Retrieved&from&http://www.capc.org
Payne,&S.,Seymour,J.,Ingleton,&C.&(2008).&Palliative(care(nursing(:(Principles(and(
evidence(for(practice(2nd(ed.&Great&Britain&by&Bell&and&Bain&Ltd:&Glasgow
Soebadi,&RD.,&Tejawinata,&S.&(1996).&Indonesia:&Status&of&Cancer&Pain&and&
Palliative&Care.&J&Pain&and&Symp Manag 12&(2).
christantie@ugm.ac.id