JOY TOBING - Karena Cinta
hari ini adalah lembaran baru bagiku
ku di sini karena kau yang memilihku
tak pernah ku ragu akan cintamu
inilah diriku dengan melodi untukmu
dan bila aku berdiri
tegar sampai hari ini
bukan karena kuat dan hebatku
semua karena cinta
semua karena cinta
tak mampu diriku berdiri tegak
terima kasih cinta
tak pernah ku ragu akan cintamu
inilah diriku dengan melodi untukmu
dan bila aku berdiri
tegar sampai hari ini
bukan karena kuat dan hebatku
semua karena cinta
semua karena cinta
tak mampu diriku dapat berdiri tegak
terima kasih cinta
terima kasih cinta
terima kasih cinta
terima kasih cinta
SPIRITUALITY
Spirituality is defined as “the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their interconnectedness to the moment, to self, to others, to nature and or to the significant and sacred.”
The spiritual practice of health care professionals may influence the caring behaviors demonstrated to patients. The ability to connect with and embrace the spirit or soul of the other as they face life limiting illness is at the heart of providing spiritual care.
Jean Watson’s theory of Caring Science and Caritas Processes® can provide a framework for the development of caring and healing practices that can facilitate spiritual care.
The Association of Paediatric Palliative Medicine Master Formulary 5th edition 2020
Download:
https://drive.google.com/drive/folders/118yNjBaxiB-FXOlpBSPSNOWxn4EmiFKO?usp=sharing
Palliative Care Toolkits and Training Manual Files
http://www.thewhpca.org/resources/category/palliative-care-toolkits-and-training-manual
For full access to courses you'll need to take a minute to create a new account for yourself on this website.
https://learningplatform.thepalliativehub.com/login/index.php
End of Life Directions for Aged Care (ELDAC)
https://www.eldac.com.au/tabid/4887/Default.aspx
The distinctions between religious and spiritual care can be defined as:
- • Spiritual care might be said to be the umbrella term of which religious care is a part. It is the intention of religious care to meet spiritual need.
- • Religious care is given in the context of shared religious beliefs, values, liturgies and lifestyle of a faith community.
- • Spiritual care is not necessarily religious. Religious care should always be spiritual.
Download PDF
Hypodermoclysis (HDC), the subcutaneous administration of fluid via continuous, intermittent or bolus infusion is possible when the oral route cannot be used. Subcutaneous fluids may offer advantages over the intravenous route unless venous access has already been established https://web.archive.org/web/20170407100951if_/http://palliative.org/NewPC/_pdfs/education/99QuestionsEbook2013.pdf
EUTHANASIA IS NOT NECESSARY
The evidence shows
that euthanasia cannot be
effectively controlled.
In the Netherlands and Belgium,
the circumstances in which killing
is deemed appropriate
have only continued
to expand
—at the expense
of the weak and marginalized.
Patients
have a right to health
and the alleviation of suffering.
Euthanasia is not necessary
to prevent pain and suffering.
The International Covenant
on Economic, Social, and Cultural Rights
affirms
the “right of everyone
to the enjoyment of the highest
attainable standard
of physical and mental health”.
https://web.archive.org/web/20160327152813/http://www.mccl-go.org/uploads/5/6/4/5/56458427/as_suicide_intl_webspreds.pdf
Hospice Plan of Care for End-Stage ALS
The hospice plan of care for ALS addresses the patient's physical and psychosocial well-being and seeks to manage a wide variety of ALS symptoms, including:- Shortness of breath; respiratory dysfunction
- Pain resulting from stiff joints, muscle cramps, pressure on skin and joints caused by immobility
- Skin care issues
- Difficulty swallowing
- Impaired hydration and nutrition
- Difficulty communicating
- Depression or anxiety
- Financial challenges
Dexamethasone has very high glucocorticoid activity and insignificant mineralocorticoid activity.
https://bnf.nice.org.uk/drug/dexamethasone.html
Power of attorney
A power of attorney is a legal document that allows someone to make decisions for you, or act on your behalf, if you're no longer able to or if you no longer want to make your own decisions.
An ordinary power of attorney is only valid while you have the mental capacity to make your own decisions. If you want someone to be able to act on your behalf if there comes a time when you don’t have the mental capacity to make your own decisions you should consider setting up a lasting power of attorney.
https://www.ageuk.org.uk/information-advice/money-legal/legal-issues/power-of-attorney/
Legal Aspects of Palliative Care
https://bit.ly/LegalPC
QUALITY OF LIFE
“Quality of life” will mean different things to all of us
but may include:
-
Being comfortable and pain-free
-
Being able to socialise and spend time with loved ones
-
Being as independent as possible
-
Not feeling a burden on others
-
Feeling emotionally well
The main aim of palliative care is
to improve the quality of life of the person
by supporting their physical and emotional needs.
https://www.england.nhs.uk/north/wp-content/uploads/sites/5/2018/07/cheshire-merseyside-clinical-practice-summary-palliative-care-symptoms.pdf
- ☛ Step 1: Discussions as the end of life approaches
- ☛ Step 2: Assessment, care planning and review
- ☛ Step 3: Coordination of care
- ☛ Step 4: Delivery of high quality services in different settings
- ☛ Step 5: Care in the last days of life
- ☛ Step 6: Care after death
What is palliative care?
Palliative care is the special care of a person whose life-limiting serious illness or disease cannot be cured. Palliative care and a palliative approach to care focuses on comfort and support to the person and family, assists with making plans and decisions for the journey ahead, and optimizes quality of life. Sharing health care wishes and goals with loved ones, doctors and other health care providers is important.
What is end of life care?
The goals for end of life care continue to be guided by the person's known wishes and priorities. Care remains active and focuses on easing pain and other discomfort, as well as to support living well to the end Of life. It is important that all end of life care options are discussed and the individual's choices are respected. This may include questions and planning related medical assistance in dying (MAiD). providing emotional and spiritual support for the person, family and friends as death draws nearer is very important.
What is last days and last hours care?
Last days and last hours care are those precious moments in which the person is still alive and when time is very short. The goals for care are to provide pain and symptom management, emotional and spiritual care, and to continue to honour the expressed wishes of the person throughout the dying process and with after-death care. This care includes providing support to family and loved ones.
https://www.interiorhealth.ca/YourCare/PalliativeCare/Pages/WhatIsPalliative.aspx
Palliative care is for people of any age, and at any stage in illness, whether that illness is curable, chronic, or life threatening.
https://palliativedoctors.org/
http://www.goldstandardsframework.org.uk/advance-care-planning
GSF - Proactive Identification Guidance (PIG)
https://drive.google.com/drive/folders/1SecysUGemORHX_jNQI1lThCz-N5l8Y6Q?usp=sharing
Who is the Palliative and End of Life Care Toolkit for?
https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/palliative-and-end-of-life-care-toolkit.aspx
May a palliative care team member
introduce palliative care options
to a patient without the consent
of the patient’s attending physician?
Hospitals have an ethical responsibility
to make generic information about
supportive and palliative care services available
to all patients on admission,
as well as when requested by a patient or family member.
In the setting of serious illness,
a patient’s nurse, chaplain, or social worker has
a responsibility to inquire
of the primary treating provider
whether an SPC consult might be appropriate.
Furthermore, a nurse, chaplain, or social worker
should be able to ask for a chart review (not a consult)
by a palliative medicine professional
or interdisciplinary team
to determine if in the judgment of the professional or team,
a consult might benefit the patient/family.
These practices are long standing
in institutions with leading SPC services.
However, SPC consultation should be treated
like any other medical consultation,
and therefore a member of a SPC team should not
discuss palliative care options
with a patient unless there is a primary clinician
or practitioner order for consultation
or a patient or family request for consultation.
Furthermore,
when a patient or family directly requests an SPC consult,
the consultant should communicate directly
with the treating clinician
or practitioner before interacting with the patient
unless the reason for the consult is a symptom crisis.
Even then, the palliative care professional
should notify the primary clinician
or practitioner as soon as practical.
WHY PALLIATIVE CARE IS ESSENTIAL IN THE FACE OF SERIOUS ILLNESS
The 5 specific behaviours in the core competencies
for End of Life care:
- Communication
- Assessment and Care Planning
- Symptom management, maintaining comfort and wellbeing
- Advanced Care Planning
- Overarching values and knowledge
http://www.twca.org.uk/endoflife.html
A working definition of End of Life Care is:
"...Care that helps all those with advanced,
progressive, incurable illness to live as
well as possible until they die. It enables
the supportive and palliative care needs
of both patient and family to be
identified and met throughout the last
phase of life and into bereavement. It
includes management of pain and other
symptoms and provision of psychological,
social, spiritual and practical support."
https://web.archive.org/web/20160911084616/http://www.ncpc.org.uk/sites/default/files/EndOfLifeCareInAdvancedKidneyDisease.pdf
PLANNING THE FUNERAL
Whilst it may be a difficult conversation,
it would be helpful to have conversations
with the person you are caring for
regarding their preferred funeral arrangements.
It may also be appropriate to have discussions
with key members of the family and important friends
to clarify their expectations
and what role they may wish to take.
Issues for consideration include:
- the type and style of funeral
- burial, cremation or entombment
- cemetery or crematorium
- coffin or casket
- death notices, mourning vehicles and flowers
- poetry, music, readings etc.
- preferences of families and friends
- cost implications
