Pelatihan perawatan paliatif STIKES Telogorejo - 21-23 Desember 2020

PELATIHAN PERAWATAN PALIATIF DAN AKHIR HAYAT
STIKES Telogorejo - Semarang, 21-23 Desember 2020
dr. Ika Syamsul Huda MZ, MPH, SpPD
Ketua Tim Perawatan Paliatif
RSUP dr. Kariadi Semarang
PALLIATIVE CARE
AND END-OF-LIFE CARE

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)

TOTAL PAIN
Total pain recognises
pain as being
physical,
psychological, social
and spiritual.
Dame Mary Cicely Saunders
INTERDISCIPLINARY
TEAMWORK IN PALLIATIVE CARE
Dame Mary Cicely Saunders
(22 Juni 1918 - 14 Juli 2005)
Hospice care movement

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/

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
1974

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

http://www.who.int/cancer/palliative/definition/en/
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.

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
Australian; 2008.

ICD-10 Version:2019
https://icd.who.int/browse10/2019/en#/Z51.5

http://www.who.int/en/news-room/fact-sheets/detail/palliative-
care
PALLIATIVE CARE IS REQUIRED
FOR A WIDE RANGE OF DISEASES
35.50% 34%
10.30%
5.70%
4.60%
9.90%

11 SYMPTOMS
• Pain
• Anorexia
• Nausea and vomiting
• Constipation
• Diarrhoea
• Dyspnea
• Fatigue
• Delirium
• Depression
• Anxiety
• Respiratory tract secretions

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.
http://www.pdpersi.co.id/kanalpersi/manajemen_mutu/data/snars_edisi1.pdf
STANDAR NASIONAL AKREDITASI RUMAH SAKIT
(Edisi 1)

Ethical Principles
 Autonomy:
Making one’s own decision
 Beneficence:
Intending to do good
 Nonmaleficence:
Intending to do no harm
 Justice:
Providing equal access
Dignity - the patient and the
persons treating the patient
have the right to dignity
Truthfulness and honesty - the
concept of informed consent
and truth telling
All these together constitute
the six values of medical ethics.
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
https://www.spict.org.uk/
https://www.spict.org.uk/spictapp/
SPICT-App

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

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).
CONTOH KASUS
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 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.
https://www.advancecareplanning.org.au/understand-advance-care-planning/advance-care-planning-explained
ADVANCE CARE PLANNING

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
DNI
Do-not-resuscitate
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
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.
INDONESIA:
Isolated Palliative Care Provision
Prof. David Clark, dkk 2019

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/
SUGGESTED READING

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

Pelatihan perawatan paliatif STIKES Telogorejo - 21-23 Desember 2020

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