A Nurse-led Intervention in Palliative Care

and Hospice Care

Nurse-led Intervention = intervensi yang
dipimpin oleh perawat
 Nurse-led Care in the clinic/ hospital.
Nurse as the most consistent presence at the bedside and as
coordinators of care play a valuable role in nurse led
interdisciplinary (Costa, 2008).
The main role of nurses in supporting patients with palliative care
needs is to maintain their independence for as long as
possible (Johnston et al., 2014).
Nurse practitioner has been identified as healthcare provider who
can serve a combination of needs (Keeling, 2015).
nurse-led care meningkatkan patient’s self-
managements skills and level of self-sufficiency, saat
dokter tampak more task-oriented (Thurah et al.,
2017).
Nurse Led Intervention improves the QoL and patient
mood because it provides more holistic care so that
the patient feels more comfortable despite their
symptoms (Groom et al., 2017, Whitehead et al 2017).
 Nurse led intervention in palliative
care
• To date, patient and nurse’s view of palliative
care still varies.
 Nurse-led Intervention

• Nurse-led consultation as an effective way of reducing patients’

concerns about cancer treatment (Schofield et al., 2016).
• Nurse‐led educational interventions has positive effects in
#UofGWorldChangers
improving cancer pain management (Zhou et al., 2015). @UofGlasgow
Nurse-led Intervention specific in palliative care

• Nurse seharusnya diberi kesempatan studi spesifik di bidang

PC dan kerjasama dengan health providers & social care
(Kennedy, 2018).
• The nurses can be a conduit between hospital and home
(Venkatasalu et al., 2015).
• Nurse led intervention dapat menjadi pionir dalam
pengembangan palliative/ hospice care. @UofGlasgow
 Research Questions

Apa yang menjadi ekspektasi patient/ family/ health provider’ dalam

meningkatkan Nurse-led intervention in palliative care services,
bagaimana tampilannya, to improve the standard of the care provided?
To answer these questions, 4 studies
will undertake in 4 steps (mixed
method)
Step 2:
The main data about patient and
family caregivers’ outcomes, details
of the family care-giver needs and
burden on PC.
 Research aim

To measure the patient’s outcomes

reported in palliative care needs, and to
assess burden and need on the family
care giver.
 Questionnaires

1) The Integrated Patient Outcomes Scale (IPOS) (Sandham et al.,

2009)  The patient needs on palliative care
2) The Supportive Care Needs Survey (SCNS) 34 (Boyes et al.,
2009).
The needs of patients in terms of psychological, health system &
information, physical & daily living, patient care & support and
sexuality one month after being diagnosed with cancer.
3) SCNS for partner / caregivers (SCNS P/CG) (Girgis et al., 2011).
4). Zarit Caregiver Burden (ZBI) (Yu et al., 2018)The burden on the
family caregiver.
Sample for stage two was 227
patient & 220 caregivers.
1). Adult 18 years old and over.
2). People with cancer who
access palliative care services in
the hospital and their family CG.
Result: Family
caregivers
Summary of ZBI score
0-20 = no burden = 42 (19.1%) participants
21-40 = medium burden = 73 (33.2%) participants
>40 heavy burden =105 (47.7%) Participants
>24 is in high risk of depression= 165 (75%) participants
The mean is 24, modus 39, minimal score is 3 and maximal 88 with
range 85.

It can be concluded that almost 50% participant is in

heavy burden and ¾ is in high risk of depression.
Summary of SCNS Family Caregivers/
partner score
The SCNS was developed to identify unmet needs cancer patients
have in four domains: Information & practical needs, Health care &
service needs, Work & social needs, Psychological & emotional
needs
Almost all item is in highly need (75%) except in sexual items (is it
true? Suddenly changes but no problems at all?)
Most prevalent unmet needs among Indonesian cancer patients
family caregivers were found in domain Health care & service
needs with mean 56.34/ st dev 12.550.
Result (Patient):
Mean score of IPOS 1 is 16 (0-40): All the
patient has symptoms and signs of
cancer & treatment.
IPOS Score 2: Almost a half participants
reported their conditions is above
means, 101 people (44.49%)
The SCNS-SF34 was originally developed by investigators to identify unmet needs
cancer patients have in five domains: physical and daily living, psychosocial, patient
care and support, health system and information, and sexual.
All item is in high need by respondent except 3 items: Being informed
about your test results as soon as possible, Changes in sexual feelings
& Changes in your sexual relationships which are Not applicable (is it
true? Suddenly changes and no problems at all?).
In summary, all the patient needs all items in five domains. Some unmet
supportive care needs of individual item of SCNS-SF 34 among the
study sample is Patient Care & support domain
 Implications
• Nurse-led intervention for palliative
care yang bisa dikembangkan di Jawa
Barat adalah item-item yang sangat
dibutuhkan dalam domain questionnaire
diatas.
• Terutama domain informasi
 Hospice care: kebutuhan di Indonesia
High burdens of communicable diseases (33%), non-
communicable diseases (58%), with an increase in cancer
(Suryati, 2016).
Incidences of cancer is 14/1000 people, with 70% in the end
stages; ½ continue medical treatment (Ministry of Health,
2017).
 Hospice care: penghalang di
Indonesia
Penghalang: perbedaan pemahaman PC diantara health-care professions,
buruknya infrastruktur kesehatan di area terpencil, sangat kurangnya
pain killers (Rochmawati et al., 2016)  rekomendasi: stakeholders
menyediakan PC training untuk dokter & perawat, masukkan dalam
kurikulum akademik, ajar keluarga &komunitas dalam perawatan
pasien.
Perawat Indonesia: 53% pengetahuan kurang tentang PC & hanya sedikit
yang mendapat informal training in hospital karena ketiadaan kurikulum
dalam setting Pendidikan (Tarihoran, 2013)
 Map 1. Distribution of adults in need of palliative care at the end of life by WHO regions.
COPYRIGHT © 2014 by Worldwide Palliative Care Alliance, All Rights
Reserved

Hospice care: kebutuhan di

Indonesia

The orange section of this map shows that 217,18-228,63/100,000 people need
palliative care in South East Asian region (Worldwide Palliative Care Alliance,
2014).
Indonesia masuk kategori group 3a dalam Worldwide Palliative
Care Alliance, 2014.
“The development of palliative care activism that is patchy in
scope and not well supported; sourcing of funding is often
heavily donor-dependent; limited availability of morphine;
small number of hospice-palliative care services that are often
home-based in nature and relatively limited to the size of the
population”
Indonesia kekurangan institusi formal untuk
menunjang long-term illness ditunjukkan ketiadaan
hospice care and kurangnya kebijakan tentang
palliative care (Kristanti, 2017).
 Map 2. Distribution of morphine consumption for palliative care in the
world. Source: Knaul FM, Farmer PE, Krakauer EL, et all (2017)

The patients who need morphin in Asia in contrast to America and Canada: Vietnam consumes
9%, India 4% and China 16% while the United States of America spent 3150% and
Canada 3090% (Knaul, 2017).
Morphine in Indonesia is 0.054 mg/capita only, pasien meninggal dengan menderita nyeri berat
(Setiabudy, Irawan et al. 2015).
 Seperti apa hospice care yang dibutuhkan di
Indonesia?
Patients with cancer are diagnosed in the end-stage condition when
symptoms were present (Nuranna et al., 2012).
Indonesian culture: tanggung jawab besar dalam perawatan anggota
keluarga sampai meninggal, diwakili pepatah Jawa ‘Mangan ora mangan
waton kumpul (Subandi, 2011).
Dalam scope palliative care, budaya ini sangat menguntungkan untuk kedua
belah pihak karena karena yang dibutuhkan pasien adalah meninggal
dengan tenang bermartabat di rumah.
Jadi hospice care yang bisa dibuat di Indonesia adalah di rumah pasien
sendiri, dilakukan oleh keluarga sendiri dengan pendampingan oleh
perawat dan penyediaan painkiller yang memadai.
Peluang di negara dengan sumber PC
terbatas seperti Indonesia

Nurses bisa jadi pemimpin dalam pengembangan palliative /

hospice care karena mereka punya relasi baik dengan
pasien dan keluarga, juga karena keluarga 24 jam
mendampingi pasien (Kristanti, 2015).

Nurse punya peran penting dalam ADL pasien, otonomi,

finansial sementara keluarga berperan dalam pendanaan,
kebutuhan spiritual dan S/S selama pasien dirawat di RS.
(Effendy et al., 2014).
Nurse and physician punya peran penting dalam mengedukasi
keluarga yang merawat pasien. (Rochmawati et al., 2016).

Perawat bisa jadi leader dalam hal ini karena ada perawat di
setiap dusun/desa di Indonesia dan mampu mengajar
keluarga memberikan perawatan pada Care givers.
 Hasil study step 3: Ekspektasi Staff PC
tentang HC; an interview

‘Palliative
care should be part of all health care
providers/ institutions, and should include shelters
and hospices, and they should have nurses’’ S7.
<Files\\STAFF INTERVIES\\STAFF7> - §. Reference 1
- 2.30% Coverage
‘Therewere patients who were ready and able to go home but
faced lack of support and facilities, financial support, transport,
and hospice care. There is no hospice care in West Java, but
there is in Surabaya. The government should provide it. Or
maybe we can persuade the private sector to run the
hospices’S5. <Files\\STAFF INTERVIES\\STAFF5> - § 6
references coded [18.46% Coverage]
‘Forpatients who are now in waiting list for ICU, government can
facilitate a hospice care. It is better for the future when the
patient can be surrounded by family. The place at the ICU only
for prospective patients. The hospital should provide unit for
those people in PC’ S6. <Files\\STAFF INTERVIES\\STAFF6> -
§ Reference 4 - 2.58% Coverage.
Nurse-led Intervention Yang dibutuhkan dalam
hospice care di Indonesia
Perawat mengajar CG melakukan perawatan ADL dan
menyelia setiap hari/periodik.

Nurse led intervention dapat dimulai dengan kemampuan/

kapasitas perawat mengkaji kebutuhan pasien dan
mengatur kerjasama dengan health providers lainnya.

Ketersediaan pain killer

 Peran RS terhadap Hospice care di rumah/shelters

Sediakan pelayanan palliative care pada pelayanan kesehatan

dasar untuk mengurangi angka kematian, penderitaan
pasien dan meningkatkan QoL & kepuasan pasien, dan
mengurangi rujukan ke RS pusat rujukan
RS yang ada layanan PC harus memperluas layanan ke
shelters dan RS daerah.
 Nurse-led intervention in Hospice care in Hospital
Mengurangi penderitaan pasien (nyeri)
Breaking the bad news
Memberi Informasi tentang penyakit,
pengobatan,
perawatan, prognosis.
Memenuhi KDM pasien
Spiritual & religious leader
Loss and grieving process
*https://cached.imagescaler.hbpl.co.uk/resize/scaleWidth/1180/cached.offlinehbpl.hbpl.co.uk/news/NST/HospiceUKandNCPC-20170331111112105.jpg
**https://www.hospiceuk.org/sf_images/default-source/what-we-offer-images/hospice-finance-support-images/hospice-care-funding-widget.jpg?sfvrsn=4

Ditanggung oleh NHS/ BPJS, tersedia di hampir semua area

Keluarga bisa ikut tinggal bersama pasien pada saat terakhir
menjelang ajal (beberapa bulan-tahun)
Dirawat oleh perawat homecare & social worker
Tersedia beragam voluntir mulai dari voluntir profesional sampai non-
professional
Fasilitas: penunjang kebutuhan dasar

Pasien boleh mengisi form DNR boleh tidak. Jika keadaan

memburuk, pasien bisa memilih dirawat di RS atau di
Hospice care sampai meninggal dengan tenang.

Ada RS yang punya unit hospice ada yang tidak.

 Home care
Pasien lansia dengan penyakit kronis bisa memilih tinggal dirumah
sendiri dengan kunjungan perawat home care secara berkala.
Usia rerata old elderly >75 tahun

https://static.standard.co.uk/s3fs-public/thumbnails/image/2017/08/01/16/old-peoples-home-for-4-year-olds.jpg?w968
Nursing
International
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 Thank you for your
attention @PurbaIsabella
chandra.isabella@unpad.ac.id
2339609C@student.gla.ac.uk

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