Pelatihan Perawatan Paliatif - STIKES Telogorejo - 21-23 Desember 2020

PALLIATIVE CARE
AND END-OF-LIFE CARE
dr. Ika Syamsul Huda MZ, MPH, SpPD

Ketua Tim Perawatan Paliatif
RSUP dr. Kariadi Semarang
PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT
STIKES Telogorejo - Semarang, 21-23 Desember 2020
CURICULUM VITAE
Nama : dr. H. Ika Syamsul Huda MZ, MPH, Sp.PD, FINASIM
Tempat/Tgl. Lahir : Semarang, 09 September 1968
Alamat : Jl. Panda Raya 77i Palebon, Pedurungan, Semarang.
No. Hp : WA 083838240991
Keluarga : Istri : Emy Poerbandari

Anak : 1. Missy Savira
: 2. Qori El-Hafizh
Pendidikan : - Program Pendidikan Dokter Spesialis Penyakit Dalam

Universitas Diponegoro, Tahun 1998
- Magister Manajemen Rumahsakit
Universitas Gadjah Mada, Tahun 2010
Pekerjaan : Staf KSM Penyakit Dalam RSUP dr. Kariadi

Ketua Tim Perawatan Paliatif RSUP dr. Kariadi
Anggota Perhimpunan Dokter Paliatif Indonesia (PERDOPIN)
Anggota Masyarakat Paliatif Indonesia (MPI)
Dame Mary Cicely Saunders
TOTAL PAIN
Total pain recognises
pain as being
physical,
psychological, social
and spiritual.
INTERDISCIPLINARY
TEAMWORK IN PALLIATIVE CARE
Hospice care movement Dame Mary Cicely Saunders

(22 Juni 1918 - 14 Juli 2005)

1963
Dame Cicely Saunders introduces the idea of
specialized care for the dying to the United States in a
lecture at Yale University.
1967
Dame Cicely Saunders creates St. Christopher’s
Hospice in the United Kingdom.
https://www.nhpco.org/hospice-care-overview/history-of-hospice/

1974
PALLIATIVE
Palliare (Bahasa Latin)
= to cloak, cover
jubah, mantel
dr. Balfour Mount

Born 14 April 1939
Urological surgeon
Father of Canada's palliative
care movement

The word “hospice” in French was used to
describe nursing homes in France.
http://www.missionhospice.bc.ca/wp-content/uploads/2018/01/A-History-of-Hospice-Palliative-Care.pdf

WHO Definition of Palliative Care
Palliative care is an approach that improves the quality of life

of patients and their families facing the problem associated
with life-threatening 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.
http://www.who.int/cancer/palliative/definition/en/

LIFE-THREATENING
ILLNESS
Each year, 40 million people are in need of palliative care.
Only 14% of people needing palliative care at the end of life
currently receive it.
http://www.who.int/ncds/management/palliative-care/en/
A New Consensus-Based Definition:
Palliative Care is the active holistic care of

individuals across all ages with SHS (serious
health-related suffering) because of severe illness
and especially of those near the end of life.
It aims to improve the quality of life of patients,

their families, and their caregivers.
https://www.jpsmjournal.com/article/S0885-3924(20)30247-5/fulltext

Suffering is health related when it is associated with illness or
injury of any kind.
Health-related suffering is serious when it cannot be relieved

without medical intervention and when it compromises physical,
social, spiritual, and/or emotional functioning.
Severe illness is a condition that carries a high risk of mortality,

negatively impacts quality of life and daily function, and/or is
burdensome in symptoms, treatments, or caregiver stress.
https://www.jpsmjournal.com/article/S0885-3924(20)30247-5/fulltext

Palliative care specialists treat people living with many disease types and chronic illnesses.
These include
☛ cancer,
☛ cardiac disease such as congestive heart failure (CHF),
☛ chronic obstructive pulmonary disease (COPD),
☛ kidney failure,
☛ Alzheimer’s,
☛ Parkinson’s,
☛ Amyotrophic Lateral Sclerosis (ALS)
☛ and many more.
☛ Palliative care is also essential for patients with COVID-19.

https://getpalliativecare.org/whatis/disease-types/
ILLNESS TRAJECTORY
Department of Health, Western Australia. Palliative Care Model of Care.

Perth: WA Cancer & Palliative Care Network, Department of Health, Western
PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT Australian; 2008.
https://icd.who.int/browse10/2019/en#/Z51.5
ICD-10 Version:2019
PALLIATIVE CARE IS REQUIRED
FOR A WIDE RANGE OF DISEASES
35.50% 34%
10.30%
5.70% 9.90%
4.60%
http://www.who.int/en/news-room/fact-sheets/detail/palliative-
PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT care
11 SYMPTOMS
• Pain
• Anorexia
• Nausea and vomiting
• Constipation
• Diarrhoea
• Dyspnea
• Fatigue
• Delirium
• Depression
• Anxiety
• Respiratory
PELATIHAN tractDANsecretions
PERAWATAN PALIATIF AKHIR HAYAT
PALLIATIVE, END OF LIFE AND BEREAVEMENT CARE

http://www.jpalliativecare.com/articles/2010/16/3/images/IndianJPalliatCare_2010_16_3_107_73639_f1.jpg
People are ‘approaching the end of life’
if they are likely to die within the next 12
months.
People “at the end of life”

people who are imminently dying and might
be in the last few hours or days of life.
https://www.dyingmatters.org/sites/default/files/user/10Questions.pdf

The clinical care domains for end of life
include:
❑ Advance care planning
❑ Recognise end of life
❑ Assess palliative care needs
❑ Provide palliative care
❑ Work together
❑ Respond to deterioration
❑ Manage dying
❑ Bereavement
Rumah sakit menetapkan proses untuk mengelola
ASUHAN PASIEN DALAM TAHAP TERMINAL.
Proses ini meliputi

a) intervensi pelayanan pasien untuk mengatasi nyeri;
b) memberikan pengobatan sesuai dengan gejala dan mempertimbangkan
keinginan pasien dan keluarga;
c) menyampaikan secara hati-hati soal sensitif seperti autopsi atau donasi
organ;
d) menghormati nilai, agama, serta budaya pasien dan keluarga;
e) mengajak pasien dan keluarga dalam semua aspek asuhan;
f) memperhatikan keprihatinan psikologis, emosional, spiritual, serta
budaya pasien dan keluarga.
STANDAR NASIONAL AKREDITASI RUMAH SAKIT
(Edisi 1)
STIKES Telogorejo - Semarang, 21-23 Desember 2020 http://www.pdpersi.co.id/kanalpersi/manajemen_mutu/data/snars_edisi1.pdf
Ethical Principles
❖ Autonomy: ❖Dignity - the patient and the

Making one’s own decision persons treating the patient
have the right to dignity
❖ Beneficence:
Intending to do good ❖Truthfulness and honesty - the
concept of informed consent
❖ Nonmaleficence: and truth telling
Intending to do no harm
❖ Justice: All these together constitute

Providing equal access the six values of medical ethics.
PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2902121/
FUTILE TREATMENT
Futile treatment is any therapeutic act or course of action

determined on the basis of current medical knowledge and
experience to hold no reasonable promise for contributing to
the patient’s well being or helping to achieve the agreed on
goals of care.
Futile treatment determined on the basis of current medical

knowledge and experience to hold no reasonable promise for
contributing to the patient’s well-being or of achieving agreed-
on goals of care.
http://www.practicalbioethics.org/files/guidelines/02%20withholding_withdrawing_web2008.pdf

Barriers to palliative care implementation, include:
• corporate power (“PC must remain in our service…”);

• denial (“we are already doing so…”);
• personal (resistance to accept end-of-life care);
• misunderstandings (PC seen as death or euthanasia);
• competition (“we have been doing so much better over
many years”); and
• conflict
https://www.uicc.org/sites/main/files/atoms/files/Gomez-Batiste_X_Connor_S_Eds._Building_Integrated_Palliative_Care_Programs_and_Services._2017.pdf

Dasar Acuan
KEPUTUSAN MENTERI KESEHATAN

REPUBLIK INDONESIA
NOMOR : 812/Menkes/SK/VII/2007
TENTANG
KEBIJAKAN PERAWATAN PALIATIF
MENTERI KESEHATAN REPUBLIK INDONESIA
Pada tanggal : 19 Juli 2007

Dr. dr. SITI FADILAH SUPARI Sp.JP (K)
http://dinkes.surabaya.go.id/portal/files/kepmenkes/skmenkes812707.pdf
Delivered by an
interdisciplinary team,
palliative care adds an extra
layer of support by addressing
the physical, emotional,
psychosocial and spiritual
concerns associated with
serious and chronic
conditions.
https://csupalliativecare.instructure.com/courses/1005/pages/what-is-palliative-
care?module_item_id=52419

Palliative Care
Team
• multidisciplinary
• interdisciplinary
• collaborative
• coordinative

PROVIDING A PALLIATIVE APPROACH TO CARE

Identify if the patient would benefit from
palliative care earlier in their illness trajectory
Three triggers that suggest that patients could benefit from a palliative
care approach:
1. The Surprise Question: ‘Would you be surprised if the patient were to

die in the next year?’
2. General indicators of decline: deterioration, advanced disease,

decreased response to treatment, choice for no further disease
modifying treatment.
3. Specific clinical indicators related to certain conditions.

Tool
SPICT-App
https://www.spict.org.uk/spictapp/
https://www.spict.org.uk/
Assess the person’s current and future
needs and preferences across all domains of
care.
Screening Tools
• Edmonton Symptom Assessment System (ESAS-r)

• Palliative Performance Scale (PPSv2)
https://www.ontariopalliativecarenetwork.ca/en/node/31896

Edmonton Symptom Assessment System:
(revised version) (ESAS-R)

www.victoriahospice.org/sites/default/files/pps_english.pdf

CONTOH KASUS
Pasien sangat lemah dan tetap berada di kursi
beberapa jam sehari. Sisa waktu, dia sedang di tempat
tidur. Dia memiliki penyakit lanjut dan membutuhkan
bantuan yang hampir lengkap dengan perawatan diri
dan makanan. Ia mengalami penurunan asupan
makanan, dengan beberapa camilan kecil yang
kebanyakan tetap belum selesai. Dia memiliki asupan
cairan yang cukup. Pasien mengantuk (DROWSY) tapi
tidak bingung (CONFUSED).
BERAPA PPS PASIEN TERSEBUT?

Plan and collaborate ongoing care to address needs
identified during the assessment. This includes
prompt management of symptoms and
coordination with other care providers.
https://www.ontariopalliativecarenetwork.ca/en/node/31896

Collaborative Care Plans:
http://www.mhpcn.net/following-provides-local-relevance-each-collaborative-care-plan

INFORMATION
BREAKING BAD NEWS
FAMILY SUPPORT
ADVANCED CARE PLANNING

• Persiapkan dan Rencanakan
• Cari Tahu Apa yang Pasien dan Keluarga Tahu dan
Ingin tahu
• Dukungan Emosi (Support Mental Pasien dan
Keluarga)
• Membuat Rekomendasi
• Resolusi konflik

ADVANCE CARE PLANNING
• Advance care planning is the process of planning
for your future health care.
• It relates to health care you would or would not like
to receive if you were to become seriously ill or
injured and are unable to communicate your
preferences or make decisions.
• This often relates to the care you receive at the end
of your life.
PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT https://www.advancecareplanning.org.au/understand-advance-care-planning/advance-care-planning-explained
Care planning and regular review
❖ Food and drinks
Assisted hydration or nutrition: consider the benefits and risks
and review plan regularly.
❖ Medication:
stop any treatments not consistent with the agreed goals of care
continue medications consistent with goals of care
❖ Make a clear record of any interventions that are not appropriate.
❖ Consider emotional, spiritual, religious, cultural, legal and family
needs
❖ Bereavement: identify those at increased risk of
complicated grief
https://www.palliativecareguidelines.scot.nhs.uk/guidelines/end-of-life-care/Care-in-the-Last-Days-of-Life.aspx
Review current care and care planning.
• Review current treatment and medication to ensure
the person receives optimal care; minimise
polypharmacy.
• Consider referral for specialist assessment if symptoms
or problems are complex and difficult to manage.
• Agree a current and future care plan with the person
and their family. Support family carers.
• Plan ahead early if loss of decision-making capacity is
likely.
• Record, communicate and coordinate the care plan.
https://www.spict.org.uk/

DNR Do-not-resuscitate
DNI Do-not-intubate
making early DNR decisions or other limitations in treatment

before fully understanding the prognosis
The five stages are: DABDA
1. Denial - "It can't be happening."
2. Anger - "Why me?"
3. Bargaining - "Just let me live to see my grandchild born."
4. Depression - "God please don't take me away from my family."
5. Acceptance - a state in which there may be an intense longing for death.

When Death Nears:
• Sleeping
• Loss of Interest in Food and Fluids
• Coolness
• Changes in Skin Color
• Rattling Sounds in the Lungs and Throat
• Bladder and Bowel Changes
• Disorientation and Restlessness
• Surge of Energy
• Breathing Pattern Changes

Futile medical care is the continued provision of
medical care or treatment to a patient when
there is no reasonable hope of a cure or benefit.
Some proponents of evidence-based medicine

suggest discontinuing the use of any treatment
that has not been shown to provide a
measurable benefit.
Futile medical care

https://en.wikipedia.org/wiki/Futile_medical_care
WITHHOLD & WITHDRAW
Tidak memberikan dan Menghentikan
Obat-obatan, Tindakan dan Pemeriksaan

mungkin perlu dipertimbangan untuk tidak
diberikan, dan yang sudah diberikan tidak
diberikan lagi.

Stopping unnecessary medications
Decisions about which medications to stop should be made by balancing the likely
prognosis from the palliative care diagnosis, with short, medium, and long-term
risks associated with stopping medications to manage co-morbidities.
https://www.caresearch.com.au/caresearch/ProfessionalGroups/NursesHubHome/Clinical/MedicationManagement/PalliativeMedications/tabid/1554/Default.aspx

Nama:
Prof. Raden Sunaryadi Tejawinata,
dr. SpTHT(K-Onk), FICS, FAAO, PGD,
Pall.Med.(ECU)
Lahir:
Cirebon, 23 Agustus 1934
Prof. Sunaryadi
BAPAK PALIATIF INDONESIA
DEKLARASI PERDOPIN
(Perhimpunan Dokter Paliatif Indonesia)
Surabaya, 22 Februari 2014
PALLIATIVE CARE

DYING WITH DIGNITY
❖ Recognising that people are dying

❖ Making sure that symptoms are properly
controlled
❖ Communicating with people, their families
and each other
❖ Providing out of hours services
❖ Making sure that service delivery and
organisation help people have a good death
https://www.ombudsman.org.uk/sites/default/files/Dying_without_dignity.pdf

MYTHS
ABOUT
PALLIATIVE
CARE

Here are indications
that death has occurred:
• No breathing for a prolonged period of time
• No heartbeat
• Eyes are fixed and slightly open, with
enlarged pupils
• Jaw relaxed, with the mouth slightly open

FUNERAL

"Semoga Husnus Khatimah"

KHUSNUL KHATIMAH
Principles of a good death
1. · To know when death is coming, and to understand what can be expected
2. · To be able to retain control of what happens
3. · To be afforded dignity and privacy
4. · To have control over pain relief and other symptom control
5. · To have choice and control over where death occurs (at home or
elsewhere)
6. · To have access to information and expertise of whatever kind is necessary
7. · To have access to any spiritual or emotional support required
8. · To have access to hospice care in any location, not only in hospital
9. · To have control over who is present and who shares the end
10. · To be able to issue advance directives which ensure wishes are respected
11. · To have time to say goodbye, and control over other aspects of timing
12. · To be able to leave when it is time to go, and not to have life prolonged
pointlessly
TAMAN PALIATIF
RSUP DR KARIADI SEMARANG, 2019
Mapping levels of palliative care development in 198 countries:
the situation in 2017
INDONESIA:
Isolated Palliative Care Provision
Prof. David Clark, dkk 2019

INDONESIA:
Isolated Palliative Care Provision
A country in this category is characterized by the development of palliative
care activism that is still patchy in scope and not well-supported; sources of
funding that are often heavily donor-dependent; limited availability of
morphine; and a small number of palliative care services that are limited in
relation to the size of the population.
Prof. David Clark, dkk 2019

SUGGESTED READING
RESOURCES TO SUPPORT YOUR CONTINUED LEARNING

ABOUT PALLIATIVE CARE AND END OF LIFE CARE
❑ http://www.mhpcn.net/palliative-care-toolbox
❑ https://www.ontariopalliativecarenetwork.ca/en/node/31896
❑ https://library.nshealth.ca/PalliativeCare
❑ https://acclaimhealth.ca/programs/palliative-care-consultation/palliative-care-
resources/
❑ https://palliativecareindonesia.blogspot.com/

THANK YOU
Palliative Care Indonesia (PCI)
https://bit.ly/palliativecareindonesia

Download:
https://drive.google.com/file/d/1pmFae9RvG5M07uicX5PcrAX
d8q25hWWH/view?usp=sharing


Pelatihan Perawatan Paliatif - STIKES Telogorejo - 21-23 Desember 2020

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PALLIATIVE CARE

AND END-OF-LIFE CARE

dr. Ika Syamsul Huda MZ, MPH, SpPD

Keluarga : Istri : Emy Poerbandari

Pendidikan : - Program Pendidikan Dokter Spesialis Penyakit Dalam

Pekerjaan : Staf KSM Penyakit Dalam RSUP dr. Kariadi

Hospice care movement Dame Mary Cicely Saunders

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

dr. Balfour Mount

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

Palliative care is an approach that improves the quality of life

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

Palliative Care is the active holistic care of

It aims to improve the quality of life of patients,

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

Health-related suffering is serious when it cannot be relieved

Severe illness is a condition that carries a high risk of mortality,

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

☛ Palliative care is also essential for patients with COVID-19.

Department of Health, Western Australia. Palliative Care Model of Care.

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

People “at the end of life”

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

Proses ini meliputi

❖ Autonomy: ❖Dignity - the patient and the

❖ Justice: All these together constitute

Futile treatment is any therapeutic act or course of action

Futile treatment determined on the basis of current medical

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

• corporate power (“PC must remain in our service…”);

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

KEPUTUSAN MENTERI KESEHATAN

Pada tanggal : 19 Juli 2007

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

1. The Surprise Question: ‘Would you be surprised if the patient were to

2. General indicators of decline: deterioration, advanced disease,

3. Specific clinical indicators related to certain conditions.

• Edmonton Symptom Assessment System (ESAS-r)

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

BERAPA PPS PASIEN TERSEBUT?

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

making early DNR decisions or other limitations in treatment

2. Anger - "Why me?"

3. Bargaining - "Just let me live to see my grandchild born."

4. Depression - "God please don't take me away from my family."

5. Acceptance - a state in which there may be an intense longing for death.

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

Some proponents of evidence-based medicine

Futile medical care

Obat-obatan, Tindakan dan Pemeriksaan

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT