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Unlike other conditions and life experiences, which only affect a certain percentage of the world’s population, the end-of-life is a stage in the process of living which all people will eventually face.
Tidak seperti kondisi dan pengalaman hidup lainnya, yang hanya mempengaruhi persentase tertentu dari populasi dunia, akhir kehidupan adalah tahap dalam proses kehidupan yang akhirnya akan dihadapi oleh semua orang.https://www.ncbi.nlm.nih.gov/books/NBK544276/
Care of the Dying Person
Key Messages
- Being able to recognise that a person is imminently dying is a crucial step to providing high quality care.
- Care of a person who is imminently dying involves both clinical and ethical considerations but is based on a thorough assessment of current symptoms and forward planning for common problems.
- Care should be based on the needs of the person and the specific clinical context of care.
- Prognostication on the basis of disease trajectory is challenging but important to patient-and family-centred care.
- Withdrawing treatment is a complex and sometimes difficult process and there are guidelines available to help clinicians in this process.
- The most common symptoms in the last two weeks to 24 hours of life are pain and shortness of breath.
Principles of Palliative Care
- Palliative care incorporates the whole spectrum of care — medical, nursing, psychological, social, cultural and spiritual. A holistic approach, incorporating these wider aspects of care, is good medical practice and in palliative care it is essential.
- The principles of palliative care might simply be regarded as those of good clinical practice, whatever the patient’s illness, wherever the patient is under care, whatever his / her social status, creed, culture or education.
SEARCH
https://www.ncbi.nlm.nih.gov/pubmed?cmd=search
Advance Care Planning
- Think- about the future - what is important to you, what you want to happen or not to happen if you became unwell.
- Talk- with family and friends, and ask someone to be your proxy spokesperson or Lasting Power Attorney (LPOA) if you could no longer speak for yourself.
- Record- write down your thoughts as your own ACP, including your spokesperson and store this safely.
- Discuss your plans with your doctor, nurses or carers, and this may include a further discussion about resuscitation (DNAR or Respect) or refusing further treatment (ADRT).
- Share this information with others who need to know about you, through your health records or other means, and review it regularly.
People are ‘approaching the end of life’ if they are likely to die within the next 12 months. This definition is used by many national organisations. It includes people whose death is imminent (expected within a few hours or days) and those with:
- advanced, progressive, incurable conditions
- general frailty and coexisting conditions that mean they are expected to die within 12 months
- existing conditions if they are at risk of dying from a sudden acute crisis in their condition
- life-threatening acute conditions caused by sudden catastrophic events.
Where we refer to people “at the end of life” we mean 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
- Anorexia–cachexia
- Anxiety
- Constipation
- Delirium
- Depression
- Diarrhoea
- Dry mouth
- Dyspnoea
- Fatigue
- Hiccups
- Insomnia
- Nausea
- Pain (intensity):
mild to moderate
moderate to severe
- Pain (type):
bone
neuropathic
visceral
- Sweating
- Terminal respiratory congestion
- Terminal restlessness
- Vomiting
Oxford Textbook of Palliative Medicine
FIFTH EDITION
When a person’s palliative care needs are anticipated to become, or are more complex and difficult to manage, access to Specialist Palliative Care (SPC) services is required.
https://www.hse.ie/eng/about/who/cspd/ncps/palliative-care/resources/referring/
The guidelines are not an all inclusive list of symptom guidelines. Rather, they are intended to be a convenient resource for some of the more common symptoms experienced by adult patients (19 years of age and over) and their families who are living with advanced life threatening illness. As they are symptom guidelines only, they do not replace individual patient and family assessment and/or clinical judgment within the scope of professional practice.
https://www.fraserhealth.ca/employees/clinical-resources/hospice-palliative-care#.XmT_GvQxWSQ
Educational Content Goals (with a focus on the Core Competencies):
https://www.stvincentcharity.com/education-research/internal-medicine-residency/explore-our-programs/palliative-care-curriculum/
There is a misconception in the community – including among some health professionals – that death is inherently painful, undignified and traumatic for both patient and family.
Ada kesalahpahaman di masyarakat - termasuk di antara beberapa profesional kesehatan - bahwa kematian pada dasarnya menyakitkan, tidak bermartabat, dan traumatis bagi pasien dan keluarga.
Kenyataannya adalah bahwa sebagian besar pasien yang menerima perawatan paliatif yang berkualitas dapat dibuat nyaman dan dimungkinkan untuk mengomunikasikan keinginan mereka dan mengucapkan selamat tinggal. Keluarga pasien yang telah menerima perawatan paliatif berkomentar tentang betapa damai kematian itu dan mengidentifikasi aspek positif yang terkait dengan peran pengasuhan mereka, di tengah kesusahan dan kesedihan yang tak terhindarkan.
Source: SVHA position on end of life care
Exploratory Analysis of Barriers to Palliative Care
These documents report on key barriers and promising approaches for improving access to and experience of palliative care for 9 population groups within Australia.https://www.health.gov.au/resources/collections/exploratory-analysis-of-barriers-to-palliative-care
https://patient.info/doctor/palliative-care
The Guidance describes three triggers that suggest patients are nearing the end of life:
- Trigger 1 – The surprise question;
- Trigger 2 – General indicators of decline;
- Trigger 3 – Specific clinical indicators related to certain conditions.
http://www.endoflifecarewirral.org/gold-standard-framework-prognostic-indicator-guidance.html
Perawatan Paliatif dan Akhir Hayat bukan mempelajari tentang Onkologi, bukan tentang Jantung, bukan tentang Geriatri, bukan tentang Sel, bukan tentang Histologi, bukan tentang Patologi Organ, bukan pula tentang Usia.Tetapi mempelajari tentang manusia yang terancam meninggal dunia yang jangka waktu hidupnya semakin terbatas karena penyakit berdasarkan keilmuan kedokteran terkini, yang memperhatikan kebutuhan dan kehendak pasien dalam masa sakitnya itu, melibatkan kerjasama dan koordinasi multidisipliner, yang melibatkan keluarga, dengan menjadikan pasien sebagai pusat asuhan perawatan agar tercapai kualitas hidup yang sesuai dengan harapan pasien dan keluarga, yang mencakup aspek fisik, psikologi, sosial dan spiritual.
Here you will find Valuable information to assist you in caring for Palliative and Hospice patients of all ages and offering guidance to those caring for them throughout their disease processes.
https://www.uclahealth.org/palliative-care/resources-and-educational-material#advancecare
http://commissioninguidance.tvscn.nhs.uk/section/end-of-life-care/
We ask the question: ‘Are there clinical indicators that the health of this person who has one or more progressive conditions is deteriorating?‘ If =YES, then it is time to assess the person’s holistic care needs and start planning future care with them.
https://www.spict.org.uk/using-spict/
Palliative care helps people live as fully and as comfortably as possible with a life-limiting illness. Palliative care is for people of any age. It can be provided in your home, a hospital, a hospice or an aged care (nursing) home.
https://www.health.gov.au/health-topics/palliative-care
https://sites.google.com/view/10-tips-for-prescribingeolc/working-with-people-at-the-end-of-life
Palliative Care Fast Facts and Concepts—originally published by EPERC since 2000. Fast Facts are edited by Sean Marks, MD; Associate Professor of Medicine at the Medical College of Wisconsin.
https://www.mypcnow.org/fast-facts/
Supporting someone who may be approaching the end of their life can be some of the most challenging work that any social care or health worker faces. This means that staff need the right skills and knowledge to do their job competently and confidently, and the right learning and development can help.
https://www.skillsforcare.org.uk/Learning-development/ongoing-learning-and-development/end-of-life-care/End-of-life-care.aspx
In the final stages of life, there may be concerns that palliative medication may have the unintended effect of hastening a patient’s death. In this situation the ‘doctrine of double effect’ may apply. This recognises that giving medication (usually by a health professional) to a person to relieve pain is lawful even if it could hasten death.
https://end-of-life.qut.edu.au/palliative-care#547403
Palliative medicine is the active holistic care of patients with life limiting illness. Palliative Medicine consultants work as part of a multidisciplinary team to aid with symptom control, psychological, social and spiritual care as well as family support and bereavement care.
The goal of palliative care is achievement of the best possible quality of life for patients and their families. Often this involves working closely alongside other health care professionals particularly other specialty consultants, clinical nurse specialists, GPs and district nurses. Palliative Medicine is delivered across a variety of settings including home, hospice, hospital, care homes and outpatient clinics.
https://www.westmidlandsdeanery.nhs.uk/postgraduate-schools/medicine/specialties-within-the-school-of-medicine/palliative-medicine
time for a rethink
http://www.goldstandardsframework.org.uk/cd-content/uploads/files/News%20Articles/BJGP%20Editorial%20-%20March2018.pdf
Four groups of life-limiting and life-threatening conditions
https://sites.google.com/view/four-groups/home
Information about Palliative and End of Life Care
Resources aims to provide essential information for carers to help them assess, plan and care for patients who have an advancing life-limiting illness.https://www.wnswphn.org.au/epaf/epaf-patients#LDOL
A Palliative Approach to Care in the Last 12 Months of Life
https://rnao.ca/bpg/guidelines/palliative-approach-care-last-12-months-life
The National Stroke Clinical Guideline recommends that stroke teams:
https://www.kcl.ac.uk/health/study/studentships/china2013/studentships/HSCRMckevittC
- should have a good understanding of the principles and practices of care at the end of life;
- recognise individuals dying following a stroke who may benefit from palliative care and;
- should facilitate access to expert and coordinated palliative care services for these individuals.
National clinical guideline for stroke
https://www.strokeaudit.org/Guideline/Full-Guideline.aspx
Management of Common Symptoms in Terminally Ill Patients
Fatigue, Anorexia, Cachexia,Nausea and Vomiting
https://www.aafp.org/afp/2001/0901/p807.pdf
Constipation, Delirium and Dyspnea
https://www.aafp.org/afp/2001/0915/p1019.pdf
https://icd.who.int/browse10/2016/en#/Z51.5
Who gives palliative care? Palliative care is usually provided by palliative care specialists, health care practitioners who have received special training and/or certification in palliative care. They provide holistic care to the patient and family or caregiver focusing on the physical, emotional, social, and spiritual issues cancer patients may face during the cancer experience.
Siapa yang memberi perawatan paliatif? Perawatan paliatif biasanya disediakan oleh spesialis perawatan paliatif, praktisi perawatan kesehatan yang telah menerima pelatihan khusus dan / atau sertifikasi dalam perawatan paliatif. Mereka memberikan perawatan holistik kepada pasien dan keluarga atau pengasuh yang berfokus pada masalah fisik, emosional, sosial, dan spiritual yang mungkin dihadapi pasien kanker selama pengalaman kanker.
PERAWATAN PALIATIF ADALAH PENDEKATAN YANG MENINGKATKAN KUALITAS HIDUP PASIEN (DEWASA DAN ANAK-ANAK) DAN KELUARGA MEREKA YANG MENGHADAPI MASALAH YANG TERKAIT DENGAN PENYAKIT YANG MENGANCAM JIWA. INI MENCEGAH DAN MENGURANGI PENDERITAAN MELALUI IDENTIFIKASI AWAL, PENILAIAN YANG BENAR DAN PERAWATAN RASA SAKIT DAN MASALAH LAIN, BAIK FISIK, PSIKOSOSIAL ATAU SPIRITUAL.
- https://www.cancer.gov/about-cancer/advanced-cancer/care-choices/palliative-care-fact-sheet#when-is-palliative-care-used-in-cancer-care
- https://www.who.int/news-room/fact-sheets/detail/palliative-care
KEPUTUSAN MENTERI KESEHATAN REPUBLIK INDONESIA
NOMOR : 812/Menkes/SK/VII/2007
TENTANG
KEBIJAKAN PERAWATAN PALIATIF
MENTERI KESEHATAN REPUBLIK INDONESIA
http://dinkes.surabaya.go.id/portal/files/kepmenkes/skmenkes812707.pdf
https://blogs.bmj.com/bmj/2020/03/06/personalised-care-what-matters-to-you/
The Flipped Classroom Paradigm for Teaching Palliative Care Skills
https://journalofethics.ama-assn.org/article/flipped-classroom-paradigm-teaching-palliative-care-skills/2013-12
Stanford Palliative Care Training Portal
https://palliative.stanford.edu/
Palliative Care Toolkits and Training Manual Files
http://www.thewhpca.org/resources/category/palliative-care-toolkits-and-training-manual
BMC Palliative Care is an open access journal publishing original peer-reviewed research articles in the clinical, scientific, ethical and policy issues, local and international, regarding all aspects of hospice and palliative care for the dying and for those with profound suffering related to chronic illness.
https://bmcpalliatcare.biomedcentral.com/
Palliative Care Educational Objectives in Relation to Accreditation Council for Graduate Medical Education Core Competencies
- Respect the dignity of both patient and caregivers (professionalism)
- Be sensitive to and respectful of the patient’s and family’s wishes (communication, professionalism)
- Use the most appropriate measures that are consistent with the choices of the patient or legal surrogate (patient care, professionalism)
- Ensure alleviation of pain and management of other physical symptoms (patient care, medical knowledge)
- Recognize, assess, and address psychological, social, and spiritual problems (communication)
- Ensure appropriate continuity of care by the patient’s primary and/ or specialist physician (systems-based practice)
- Provide access to therapies that may realistically be expected to improve the patient’s quality of life (medical knowledge, practice-based learning, systems-based practice)
- Provide access to appropriate palliative care and hospice care (patient care)
- Respect the patient’s right to refuse treatment (patient care, professionalism, practice-based learning)
- Recognize the physician’s responsibility to forego treatments that are futile (patient care, medical knowledge, practice-based learning)
Process of Dying
While there may be many different ways of dying the most common mode of dying involves the following:
- A period of increasing weakness and tiredness
- A period of withdrawal
- A period of unconsciousness
- A period of shutting down
- Cooling of peripheries
- Irregularities of heart beat
- Stiffness caused by immobility.
- Breathing patterns change
- Difficulties in swallowing
Dying Matters Awareness Week
https://www.cochrane.org/news/dying-matters-awareness-week
Prior to referring a patient for Specialist Palliative Care, review the referral criteria, triggers for referral and reason(s) for referral
https://ww2.health.wa.gov.au/Articles/N_R/Referral-to-specialist-palliative-care
Chapter e8: Palliative Care
https://accesspharmacy.mhmedical.com/content.aspx?bookid=1861§ionid=146078092#1145218116
- assessment
- advice
- consultation
- support
- direct patient care
- assistance with discharge planning.
Untuk mematikan Syamsul itu mudah,
asal tidak diberikan makan maka Syamsul akan mati,
Tapi sayangnya Tuhan tetap memberi makan,
maka Syamsul tak segera mati.
Kematian hanyalah pembebasan manusia dari tugas harian,
dan tugas itu akan diserahterimakan, untuk dilanjutkan oleh penerusnya.
Dari manusia lama kepada manusia baru,
sampai kiamat.
Guidelines Palliative Care for Adults https://www.icsi.org/guideline/palliative-care/
The Palliative Care Bridge delivers innovative educational videos and resources on palliative care by respected experts and specialists in their fields. Our aim is to better equip users of the site to gain confidence and specialised knowledge in the delivery of appropriate palliative care to people in need.
http://www.palliativecarebridge.com.au/
Palliative and End of Life Care Outcomes
- People receive health and social care that supports their wellbeing,irrespective of their diagnosis, age, socio-economic background, care setting or proximity to death.
- Orang-orang memiliki kesempatan untuk berdiskusi dan merencanakan kemungkinan penurunan kesehatan di masa depan, lebih disukai sebelum krisis terjadi, dan didukung untuk mempertahankan kemandirian selama mungkin.
Membahas kematian adalah sesuatu yang sebagian besar dari kita hindari. Ketidaknyamanan potensial tidak hanya dalam pikiran pasien - itu juga kemungkinan berada dalam pikiran para profesional yang merawat mereka.
http://www.sad.scot.nhs.uk/before-death/end-of-life-care/The specifics of a ‘good death’ vary for each individual and defy neat definition.
- To know when death is coming, and to understand what can be expected.
- To be able to retain control of what happens.
- To be afforded dignity and privacy.
- To have control over pain relief and other symptom control.
- To have choice and control over where death occurs (at home or elsewhere).
- To have access to information and expertise of whatever kind is necessary.
- To have access to any spiritual or emotional support required.
- To have access to hospice care* in any location, not only in hospital.
- To have control over who is present and who shares the end.
- To be able to issue advance directives which ensures wishes are respected.
- To have time to say goodbye, and control over other aspects of timing.
- To be able to leave when it is time to go, and not to have life prolonged pointlessly.
http://www.cheshire-epaige.nhs.uk/
Care at the end of life
https://www.health.qld.gov.au/clinical-practice/guidelines-procedures/patient-safety/end-of-life
https://smhs.gwu.edu/gwish/clinical/fica/self-assessment
The FICA tool can help you think about your personal spiritual history:
F - Faith and Belief
Apakah saya memiliki keyakinan spiritual yang membantu saya mengatasi stres? Dengan penyakit? Apa arti hidup saya?
https://smhs.gwu.edu/gwish/clinical/fica/self-assessment
Choosing where you would like to die is a personal decision. Here we outline the options of dying in your own home, in a palliative care unit or hospice, in hospital, or in a residential aged care facility.
Memutuskan di mana Anda ingin dirawat ketika Anda mendekati akhir hidup bisa sulit. Memiliki kontrol atas di mana kematian terjadi sering dianggap sebagai faktor kunci dalam mati dengan baik. Di mana tempat itu mungkin akan berbeda untuk semua orang.
https://www.cancercouncil.com.au/cancer-information/advanced-cancer/end-of-life/where-to-die/
- Pertanyaan Kejutan: "Apakah Anda akan terkejut jika pasien ini mati dalam beberapa bulan, minggu, hari berikutnya"?
- Indikator umum penurunan - kemunduran, meningkatnya kebutuhan atau pilihan tanpa perawatan aktif lebih lanjut.
- Indikator klinis spesifik terkait dengan kondisi tertentu.
THE GSF - PROGNOSTIC INDICATOR GUIDANCE
Identifikasi awal dari orang yang mendekati akhir hidup mereka dan dimasukkan dalam daftar mengarah pada perencanaan sebelumnya dan perawatan terkoordinasi yang lebih baik.
https://www.goldstandardsframework.org.uk/cd-content/uploads/files/General%20Files/Prognostic%20Indicator%20Guidance%20October%202011.pdf
https://www.goldstandardsframework.org.uk/cd-content/uploads/files/General%20Files/Prognostic%20Indicator%20Guidance%20October%202011.pdf
© Canadian Hospice Palliative Care Association, Ottawa, Canada, 2013
Perawatan paliatif memainkan peran penting bagi pasien selama sakitnya, tidak hanya pada akhir kehidupan. Pengobatan penyakit menurun seiring dengan perkembangan penyakit, sementara perawatan paliatif meningkat ketika orang tersebut mencapai akhir kehidupan. Perawatan paliatif juga memberikan dukungan bagi keluarga selama seluruh masa ini. Setelah pasien meninggal, penting untuk memberikan konseling berkabung untuk keluarga dan teman-teman.
http://bc-cpc.ca/cpc/documents/pdf/Chapter%201-%20Palliative%20Care%20is%20a%20Public%20Health%20Issue.pdf
http://inctr-palliative-care-handbook.wikidot.com/iahpc-list-of-essential-drugs-for-palliative-care
END OF LIFE CARE FOR ADULTS
- People approaching the end of life are identified in a timely way.
- People approaching the end of life and their families and carers are communicated with, and offered information, in an accessible and sensitive way in response to their needs and preferences.
- Orang yang mendekati akhir kehidupan ditawarkan penilaian holistik komprehensif dalam menanggapi perubahan kebutuhan dan preferensi mereka, dengan kesempatan untuk membahas, mengembangkan dan meninjau rencana perawatan yang dipersonalisasi untuk dukungan dan perawatan saat ini dan di masa depan.
- ...
https://www.ec4h.org.uk/resources/anticipatory-care-planning-in-scotland/
A Model to Guide Hospice Palliative Care:
Based on National Principles and Norms of Practice
Revised and Condensed Edition: 2013
Perawatan paliatif paling efektif diberikan oleh tim interprofesional penyedia layanan kesehatan yang berpengetahuan luas dan terampil dalam semua aspek perawatan dalam disiplin praktik mereka. Tim profesional datang bersama dengan anggota keluarga, teman dan pengasuh lainnya untuk membentuk lingkaran peduli di sekitar orang dan keluarga.
https://www.chpca.ca/wp-content/uploads/2019/12/norms-of-practice-eng-web.pdf
In hospitals – research would suggest that at any one time 30% of acute hospital inpatients will be in their final year of life (Clarke 2014).
https://www.goldstandardsframework.org.uk/How-to-use-the-GSF-PIG-in-your-practice
https://sites.google.com/view/10-tips-for-prescribingeolc/discussing-values-goals-and-preferences
Knowing when someone is in the last days and hours of life is not always easy. It is important to get the views of all those involved so that everyone is in agreement that the person is in the last days and hours of life and a death is expected.Informed about palliative and end of life care - NHS Education for Scotland (NES)
https://learn.nes.nhs.scot/3113/palliative-and-end-of-life-care-enriching-and-improving-experience/informed-about-palliative-and-end-of-life-care
Our resources will support adult social care staff, and their managers, to develop their skills and knowledge in end of life care.
https://www.skillsforcare.org.uk/Learning-development/ongoing-learning-and-development/end-of-life-care/End-of-life-care.aspx
Definition of End of Life Care
General Medical Council 2009
https://web.archive.org/web/20120504103457if_/http://www.gmc-uk.org/static/documents/content/End_of_life.pdf
People are ‘approaching the end of life’ when they are likely to die within the next 12 months.
This includes people whose death is imminent (expected within a few hours or days) and those with:
- Advanced, progressive, incurable conditions
- General frailty and co-existing conditions that mean they are expected to die within 12 months
- Existing conditions if they are at risk of dying from a sudden acute crisis in their condition
- Life-threatening acute conditions caused by sudden catastrophic events.
- Panduan ini juga berlaku untuk neonatus yang sangat prematur yang prospek untuk bertahan hidup diketahui sangat buruk, dan untuk pasien yang didiagnosis memiliki status vegetatif persisten (PVS), yang keputusannya untuk menarik perawatan dapat menyebabkan kematian mereka.
http://www.cheshire-epaige.nhs.uk/wp-content/uploads/2018/11/A-Quick-Guide-to-Identifying-Patients-for-Supportive-and-Palliative-Care.pdf
Sekitar 1% dari populasi meninggal setiap tahun, namun secara intrinsik sulit untuk memprediksi atau mengidentifikasi pasien mana yang mungkin dalam tahun terakhir kehidupan mereka. Jika diprediksi sebelumnya, beberapa tindakan perawatan suportif dapat diperkenalkan yang akan memungkinkan diskusi lebih awal dari keinginan mereka, meningkatkan perawatan yang selaras dengan preferensi mereka dan lebih sedikit krisis.
Singkatnya, jika kita dapat mengidentifikasi pasien-pasien ini dengan lebih baik, kita mungkin akan lebih mampu memberikan perawatan yang lebih baik bagi mereka ketika mereka mendekati akhir hidup mereka.
The main processes used in GSF are to identify, assess, plan, and at all times communicate about patient care and preferences. Use of this guidance might enable better identification of patients nearing the end of their lives i.e. in the last 6-12 months of life, to trigger better assessment and pre-planning e.g. holistic needs assessment, Advance Care Plans, and the appropriate management care plan and provision of supportive care related to their needs.
https://web.archive.org/web/20101126173257/http://www.goldstandardsframework.nhs.uk/Resources/Gold%20Standards%20Framework/PrognosticIndicatorGuidancePaper.pdf
https://www.resus.org.uk/dnacpr/decisions-relating-to-cpr/
https://www.resus.org.uk/_resources/assets/attachment/full/0/16643.pdf
CPCRE - Centre for Palliative Care Research and Education
https://www.health.qld.gov.au/cpcre
GOOD PALLIATIVE AND END OF LIFE CARE
https://sites.google.com/view/palliative-care-resources/good-palliative-and-end-of-life-care
Start Your Palliative Care Education Today
https://palliativecareeducation.com.au/
Welcome to the Tasmanian Palliative Care Formulary
https://palliativecareformulary.tas.gov.au/SpecialtyFormulary/3
Palliative and end of life care services in Scotland
These indicators apply to all palliative and end of life care services in Scotland whether directly provided by an NHS board or secured on behalf of an NHS board and focus on:
- identification
- assessment and care planning
- accessing patient information, and
- place of death.
https://www.africanpalliativecare.org/
https://www.chpca.ca/
https://hospicecare.com/home/
https://www.nhpco.org/
https://palliativecare.org.au/
https://www.palliative.info/
https://www.ageuk.org.uk/
“What is a palliative care social worker and what do they do?”. It’s a question that gets asked regularly and is one that can elicit a variety of answers depending on the person being asked and the setting in which the role operates.
https://www.apcsw.org.uk/social-worker-role/
NHS Education for Scotland website aims to support healthcare staff who are working with patients, carers and families before, at, and after death. It provides key information on the clinical, legislative, and practical issues involved.
http://www.sad.scot.nhs.uk/
Palliative care differs from Hospice care in that Palliative Care can be provided at any time during the illness and for as long as the patient needs this care. Hospice care is usually provided when the patient’s life expectancy is limited to months and the patient is not seeking aggressive treatment for their illness.
https://www.midlandhealth.org/main/palliative-care
The Cochrane Collaboration
https://pcl.cochrane.org/
It is estimated that 5–6% of the population have the complexity of need where they could potentially benefit from ACP. Individuals should be identified and offered interventions in a timely way to enable informed choice and ensure optimal outcomes.
https://ihub.scot/project-toolkits/anticipatory-care-planning-toolkit/anticipatory-care-planning-toolkit/guidance-for-health-and-social-care-professionals/considering-the-anticipatory-care-planning-process/
SYMPTOM MANAGEMENT
http://inctr-palliative-care-handbook.wikidot.com/table-of-contents
ADULT PALLIATIVE CARE SERVICES MODEL OF CARE FOR IRELAND
https://www.lenus.ie/bitstream/handle/10147/624170/Palliative-Care-Model-of-Care-2019.pdf?sequence=1&isAllowed=y
Site Map
https://www.palliativecareggc.org.uk/?page_id=991
Many people believe that they should put off using painkillers for as long as possible, and only take them when their pain gets unbearable. However, if pain is not treated it may become more difficult to control, so it's important to take any painkillers that you are prescribed in the way that your doctor advises.
https://www.nhsinform.scot/care-support-and-rights/palliative-care/symptom-control/controlling-pain
https://www.goodlifedeathgrief.org.uk/
What is Anticipatory Care Planning? Anticipatory Care Planning is about individual people thinking ahead and understanding their health.
https://ihub.scot/project-toolkits/anticipatory-care-planning-toolkit/anticipatory-care-planning-toolkit/
"My Anticipatory Care Plan"
https://ihub.scot/project-toolkits/anticipatory-care-planning-toolkit/anticipatory-care-planning-toolkit/documents/
Links to further information The following are links to some sites which may be useful if you are searching for information on Palliative Care. Resources to support good palliative and end of life care
https://www.palliativecarescotland.org.uk/content/links/
https://www.togetherforshortlives.org.uk/changing-lives/sharing-learning-networking/palliative-care-networks/
Care should be based on the assessed needs of the patient, the carers or family and not
https://www.aci.health.nsw.gov.au/palliative-care-blueprint/the-blueprint/essential-components/essential-component-5
Standard Framework and Palliative Care
https://sites.google.com/view/standard-framework-and-pc/home
The ‘Caring for people in the last days and hours of life’ Guidance and associated 4 principles provide a framework for further planning and development across health and care settings in Scotland.
https://www.gov.scot/publications/caring-people-last-days-hours-life-guidance/
Palliative Care Education – Anytime, Anywhere
https://csupalliativecare.org/programs/
Indicators specify a minimum set of measures that demonstrate person-centred, safe and effective care is being delivered. Patients, carers, third sector and healthcare professionals helped to develop the indicators for palliative and end of life care.
http://www.healthcareimprovementscotland.org/our_work/person-centred_care/palliative_care/palliative_care_indicators.aspx
Palliative and End of Life Care Network for Lancashire and South Cumbria
https://www.england.nhs.uk/north-west/north-west-coast-strategic-clinical-networks/our-networks/palliative-and-end-of-life-care/palliative-and-end-of-life-care-network-for-lancashire-and-south-cumbria/
Pharmacological management of symptoms for adults in the last days of life
https://www.sahealth.sa.gov.au/wps/wcm/connect/public+content/sa+health+internet/clinical+resources/clinical+topics/medicines+and+drugs/pharmacological+management+of+symptoms+for+adults+in+the+last+days+of+life
http://www.northerncanceralliance.nhs.uk/wp-content/uploads/2018/11/NECNXPALLIATIVEXCAREX2016.pdf
Guidance and Resources
https://www.northerncanceralliance.nhs.uk/pathway/palliative-and-end-of-life-care/supportive-palliative-and-end-of-life-care-resources/
Health Professionals
https://www.caresearch.com.au/caresearch/tabid/55/Default.aspx
Colour-coded labelling system
https://www.caringathomeproject.com.au/tabid/5332/Default.aspx
http://www.cheshire-epaige.nhs.uk/document-library/
http://eolp.co.uk/
Links to best-practice tools from around the world to support primary care providers in the delivery of palliative care.
http://ocp.cancercare.on.ca/cms/One.aspx?portalId=77515&pageId=76967
http://www.inctr.org/resources/inctr-publications/index.html
http://www.inctr.org/fileadmin/user_upload/inctr-admin/Media/Palliative_Care_Complete.pdf
Clinical resources, training and education
https://northwestpalliative.com.au/resources/clinical-resources-training-education/
Paediatric Palliative Care Guidelines 4th Edition
http://paed.pallcare.info/
Palliative care language and definitions
https://northwestpalliative.com.au/resources/palliative-care-definitions/
The AMBER Care Bundle
http://cec.health.nsw.gov.au/keep-patients-safe/end-of-life-care/amber-care
SG Strategic Framework for Action
https://www.palliativecarescotland.org.uk/news/strategic-framework-for-action/update-may-2018/
https://palliativecareeducation.com.au/my/
Learning modules
http://www.pcc4u.org/learning-modules/core-modules/module-1-principles
Palliative and Supportive Care Education (PaSCE)
https://www.cancerwa.asn.au/professionals/pasce/
End of Life/Palliative Care Quiz
- The focus of palliative care is to decrease pain and suffering and provide comfort and support for people with serious illnesses. But not all people who receive palliative care are terminally ill. In fact, some are undergoing treatments to cure their illness, but they need help controlling nausea, fatigue, pain or other symptoms. Hospice care, which is for people who are facing the end of their life, is a specialized part of palliative care.
- The philosophy of hospice is that people who are facing the end of their life should be as comfortable as possible. For many, this means remaining in their own home. Hospice care also may be provided at a hospice facility, in the hospital or in a nursing home.
- Hospice care is about giving people control, dignity and comfort in their final days. The focus is on how to make every day be as good as possible. Hospice care doesn't prolong life or hasten death, but it can help ease the fear, pain and loneliness that terminally ill patients and their families face.
- People with a terminal illness who choose hospice will continue any medical care that maintains or improves their lives. They also are treated for pain, nausea and other symptoms that cause distress. But they stop trying to do everything possible to extend their life, focusing instead on enhancing the quality of the time they have left.
- Pain, loss of appetite, difficulty breathing and other symptoms cause people distress. The goal of palliative care is to manage and relieve those symptoms. In some cases, relieving symptoms helps people recover faster. In other cases, symptoms are managed to make the end of life more comfortable.
- Hospice care is a personal choice. You can accept it or not. And you can choose to stop hospice care once you've started it.
- People are typically eligible for hospice care if they are likely to have 6 months or less to live based on the natural course of their illness. Hospice teams help people maintain quality of life, dignity and control. Unfortunately, hospice is sometimes viewed as giving up, and the decision to ask for hospice help comes just days or weeks before death, which means people miss out on months of comfort and support.
- Hospice workers can provide bereavement services, grief counseling, spiritual counseling and emotional support to families. They help loved ones understand the dying process and can help arrange other services, such as preparing meals or running errands. Some programs have respite care to give caretakers a break.
- Hospice and end-of-life teams can involve a large group of people that includes counselors, physical therapists, doctors, pain specialists, nurses, spiritual advisers, social workers and aides to help with bathing and other daily needs. Hospice doctors often work closely with a patient's personal physician to set up care programs. Family, friends, loved ones and volunteers often provide much of the day-to-day support.
- Medicare, private insurance and, in most states, Medicaid cover most of the expenses associated with hospice care. Hospice services also may be covered by veterans' benefits. Some hospice programs offer a sliding fee for patients with limited incomes.
http://www.ataglanceseries.com/nursing/palliativecare/mcqs.asp
Palliative care Trivia Quiz
https://www.proprofs.com/quiz-school/story.php?title=palliative-care
Chapter 11: Multiple choice questions
http://wps.pearsoned.co.uk/ema_uk_he_PX_devpsych/206/52953/13556061.cw/content/index.html
AOA Hospice & Palliative Medicine Certification Exam
https://www.boardvitals.com/blog/hospice-palliative-medicine-board-exam-questions/
End of Life Care Chapter Exam
https://study.com/academy/exam/topic/end-of-life-care.html
INITIAL HOLISTIC NURSING ASSESSMENT
https://sites.google.com/view/initial-holistic-nursing-asses/home
Welcome to the Scottish Partnership for Palliative Care Bringing people together to improve experiences of declining health, death, dying and bereavement.
https://www.palliativecarescotland.org.uk/
https://www.researchgate.net/publication/
We have designed these initiatives and programs to help you access and receive the best palliative care possible.
https://www.health.gov.au/health-topics/palliative-care/about-palliative-care/what-were-doing-about-palliative-care
Patient Identification and Assessmenthttps://www.capc.org/toolkits/patient-identification-and-assessment/
https://www.nursingtimes.net/clinical-archive/end-of-life-and-palliative-care/how-to-implement-the-gold-standards-framework-to-ensure-continuity-of-care-16-08-2010/
END-OF-LIFE CARE INDICATOR TOOLS
https://wales.pallcare.info/index.php?p=pages&pid=221
This web page enables you to download some of the documents with either an NHS Local Health Board logo, or a custom uploaded organisational logo. It is the user's responsibility to ascertain whether suitable permission or authority exists to use the logo.
https://wales.pallcare.info/ipads/ipads_resources_logo.php
- The trusted site for healthcare reviews
- Palliative Care Matters
- Palliative Care Guidelines
- Palliative Care Wales
The practice of hospice palliative care is relatively young. In Canada, it began in the 1970s and has evolved rapidly. The term “hospice palliative care” was coined to recognize the convergence of hospice and palliative care into one movement that has the same principles and norms of practice.
https://www.chpca.ca/resource/norms/
- stable,
- unstable,
- deteriorating,
- terminal, ,
- bereavement
- https://meteor.aihw.gov.au/content/index.phtml/itemId/681549
- https://apps.hnehealth.nsw.gov.au/hapcn/assets/resource/PC%20Clinical%20Assessment%20Tools.pdf
- https://ahsri.uow.edu.au/content/groups/public/
- https://www.wnswphn.org.au/uploads/documents/ePAF/
- Five Phases of Palliative Care
https://www.wnswphn.org.au/epaf/epaf-healthcare-professionals
Clinician: “What are your most important goals if your health situation worsens?”
Patient: “Just to spend time with the family. That’s about it. And be here as long as I can. I’m not looking for a miracle. I’m just looking for a little time.”
https://www.ariadnelabs.org/areas-of-work/serious-illness-care/
The AMBER care bundle has four key interventions for patients whose potential for recovery is uncertain, with clear timelines for response.
- Talking to the patients and their family to let them know that the healthcare team has concerns about their condition, and to discuss their preferences and wishes
- Confirming the current medical plan
- Deciding together how the patient will be cared for should their condition get worse
- Agreeing the plan with all the clinical team responsible for the patient’s care as well as the patient and family.
Palliative Care Outcomes Collaboration (PCOC)
https://www.caresearch.com.au/caresearch/tabid/99/Default.aspx
HOW TO USE THE GSF PIG IN YOUR PRACTICE
https://sites.google.com/view/howtousethegsf-pig/home
We have designed these initiatives and programs to help you access and receive the best palliative care possible.
https://www.health.gov.au/health-topics/palliative-care/about-palliative-care/what-were-doing-about-palliative-care
https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/treatment-and-care-towards-the-end-of-life
WA Cancer and Palliative Care Network
https://ww2.health.wa.gov.au/Articles/U_Z/WA-Cancer-and-Palliative-Care-Network
The health care that people receive in the last years, months and weeks of their lives can help to minimise the distress and grief associated with death and dying for the individual, and for their family, friends and carers.
https://www.safetyandquality.gov.au/our-work/end-life-care
Trust your intuition
- Ask yourself, “Would I be surprised if this person were to die in the next 12 months?” This simple question is accurate seven times out of ten.
- If not, talk to them and consider registration.
- If it would be a surprise to you if they were to live longer than 6-12 months, they are a high priority for talking and planning.
This free online training is designed for the Australian health context, and is available to participants by simply creating an account and logging in.
TOP 10 THINGS PALLIATIVE CARE CLINICIANS WISHED EVERYONE KNEW ABOUT PALLIATIVE CARE
- Palliative care can help address the multifaceted aspects of care for patients facing a serious illness
- Palliative care is appropriate at any stage of serious illness
- Early integration of palliative care is becoming the new standard of care for patients with advanced cancer
- Moving beyond cancer: palliative care can be beneficial for many chronic diseases
- Palliative care teams manage total pain
- Patients with a serious illness have many symptoms that palliative care teams can help address
- Palliative care can help address the emotional impact of serious illness on patients and their families
- Palliative care teams assist in complex communication interactions
- Addressing the barriers to palliative care involvement: patients’ hopes and values equate to more than a cure
- Palliative care enhances health care value
Source: Jacob J. Strand, MD; Mihir M. Kamdar, MD; and Elise C. Carey, MD
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.
An approach to care that does not attempt to lengthen or shorten the client's life. It acknowledges death is drawing near, although this may be many months or even years away. The approach also recognises that a range of symptoms may need to be addressed to improve overall comfort during life and around the time of death. (DoHA 2006)
https://www.pallcaretraining.com.au/mod/page/view.php?id=198
Some people have more complex physical, psychological, social or spiritual problems. The severity and/or intractable nature of these complex palliative care problems may exceed the resources of the primary treating team and may require referral to the specialist palliative care service.
Advance Care Directives
Since 1 July 2014 the Advance Care Directives Act 2013 (SA) has been in operation. This allows a person to:
- set out values and wishes to guide decisions about their future healthcare and other personal matters
- set out what, if any, particular healthcare they refuse and in what circumstances and
- appoint one or more substitute decision-makers.
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- Acetaminophen/paracetamol
- Amitriptyline
- Atropine
- Bisacodyl
- Carbamazepine
- Carbocisteine
- Chlorpromazine
- Citalopram
- Clonazepam
- Codeine
- Desipramine
- Dexamethasone
- Dextromethorpan
- Diazepam
- Diclofenac
- Dimenhydrinate
- Diphenhydramine
- Docusate
- Fentanyl transdermal patch
- Gabapentin
- Glycopyrronium/glycopyrrolate
- Haloperidol
- Hyoscine butyl bromide
- Hyoscine hydrobromide
- Ibuprofen
- Imipramine
- Levomepromazine (Methotrimeprazine)
- Loperamide
- Lorazepam
- Megestrol Acetate
- Methadone
- Metoclopramide
- Midazolam
- Morphine
- Naproxen
- Octreotide
- Olanzapine
- Ondansetron
- Oxycodone
- Phenytoin
- Phenobarbital
- Prochlorperazine
- Risperidone
- Senokot
- Tramadol
- Tranexamic Acid
- Trazodone
Olanzapine http://inctr-palliative-care-handbook.wikidot.com/olanzapine
- natural opiates, alkaloids contained in the resin of the opium poppy including morphine, codeine and thebaine, but not papaverine and noscapine which have a different mechanism of action;
- semi-synthetic opiates, created from the natural opioids, such as hydromorphone, hydrocodone, oxycodone, oxymorphone, desomorphine, diacetylmorphine (heroin), nicomorphine, dipropanoylmorphine, benzylmorphine and ethylmorphine;
- fully synthetic opioids, such as fentanyl, pethidine, methadone, tramadol and propoxyphene;
- endogenous opioid peptides, produced naturally in the body, such as endorphins, enkephalins, dynorphins, and endomorphins.
Naloxone
Antidote for opioid sensitivity or overdose induced respiratory depression is Naloxone.
Dilute 400micgrograms in 10ml 0.9% sodium chloride to give a concentration of 40 micgrograms /ml. Administer 40-80microgram naloxone hydrochloride IV bolus every 2-3 minutes up to a maximum of 10mg, until the patient’s breathing and the level of consciousness has improved (if in extremis can use a higher starting bolus such as 200 micrograms). If IV route is not available, naloxone may be administered as IM injection. Dose is always titrated to individual patients condition and rate of reversal.
https://www.aci.health.nsw.gov.au/__data/assets/pdf_file/0011/306389/liverpoolMorphine.pdf
DEFINITIONS
Palliative care is the care of patients with active, progressive, faradvanced disease, for whom the focus of care is the relief and prevention of suffering and the quality of life.
The following should be noted
- active disease: this activity can be confirmed and measured objectively by clinical examination and investigations
- progressive disease: this too can be assessed clinically
- far-advanced disease: more difficult to define but examples are
o extensive metastatic disease in cancer
o refractory cardiac failure
o total dependency in neurodegenerative conditions or Alzheimer’s disease
- focus on the quality of life is the key feature of the definition
- it is person-oriented, not disease-oriented
- it is not primarily concerned with life prolongation (nor with life shortening)
- it is not primarily concerned with producing long term disease remission
- it is holistic in approach and aims to address all the patient’s problems, both physical and psychosocial
- it uses a multidisciplinary or interprofessional approach involving doctors, nurses and allied health personnel to cover all aspects of care
- it is dedicated to the quality of whatever life remains for the patient
- palliative care is appropriate for all patients with active, progressive, faradvanced disease and not just patients with cancer
- palliative care is appropriate for patients receiving continuing therapy for their underlying disease
- palliative care should never be withheld until such time that all treatment alternatives for the underlying disease have been exhausted
The message of palliative care is that whatever the disease, however advanced it is, whatever treatments have already been given, there is always something which can be done to improve the quality of the life remaining to the patient.
The IAHPC Manual of Palliative Care 3rd Edition
The journey to relieve suffering and improve quality of life
Getting Started: Guidelines and Suggestions for those Starting a Hospice / Palliative Care Service 2nd Edition
PALLIATIVE MEDICINE COMMUNICATION CARD
The eight NCP domains of palliative care:
- Structure and processes of care, including: interdisciplinary assessment and care planning; team composition, qualifications, and professional development; incorporation of volunteers; quality assurance and performance improvement; interorganizational collaboration across the continuum of care; and, the physical environment in which palliative care is provided.
- Physical aspects of care, which includes assessment of, and multidimensional approaches—including, but not limited to pharmacology—to address pain and other physical symptoms. The domain also emphasizes the development and implementation of policies to guide pain treatment and the prescribing and dispensing of opioids.
- Psychological and psychiatric aspects of care, including: the interdisciplinary team’s assessment of, and response to, illness-related psychological reactions (such as grief) and psychiatric conditions (such as anxiety). The domain also specifically describes elements of bereavement services.
- Social aspects of care, including: assessment, care planning and interventions to address social needs, such as access to financial resources, and to maximize social well-being, such as family communication and coping. The domain also outlines core elements of a palliative social assessment and stresses the role of professional social work in palliative care.
- Spiritual, religious and existential aspects of care. This domain applies a broad definition of spirituality to assessment and intervention, including at the time of death and post death. The domain also describes the complementary roles of spiritual care professionals and other interdisciplinary team members in addressing patients’ and families’ spiritual, religious and existential concerns.
- Cultural aspects of care. Drawing on wide-ranging definitions of culture, this domain illustrates how palliative care programs serve patients and families in a culturally and linguistically appropriate manner, such as by eliciting and supporting perceptions and practices related to illness or caregiving. The domain also identifies ways in which palliative care providers strive for cultural and linguistic competence at both practitioner and program levels.
- Care of patients at the end of life, including the palliative care team’s role in addressing physical symptoms and responding to patients’ and families’ psychosocial, spiritual and cultural needs at the end of life and following death. The domain also underscores the integral role hospice programs play in end-of-life care.
- Ethical and legal aspects of care, including the integration of person-centered assessment and care planning with healthcare decision-making, such as in the advance care-planning process. The domain also addresses complex ethical issues common in palliative care and makes clear the need to adhere to professional, state and federal laws, regulations and standards.
Clinical Practice Guidelines for Quality Palliative Care, 4th edition
NQF - A NATIONAL FRAMEWORK AND PREFERRED PRACTICES FOR PALLIATIVE AND HOSPICE CARE QUALITY
The WHO also recommends that pain relief medication be given according to the following framework.
• By mouth – Oral administration of medication is an effective, convenient and inexpensive method of medicating patients and should be used wherever possible. Medicines are easy to titrate using this route.
• By the clock - Medications for persistent pain should be administered around the clock, with additional doses as needed. This allows continuous pain relief by maintaining a constant level of drug in the body, and helps to prevent pain from recurring. The goal is to prevent rather than react to pain.
• By the ladder – The WHO ladder is a validated and effective method of ensuring therapy for pain. Medications should be administered according to the severity of the pain and drug suitability.
• On an individual basis - Individualise the pain management, different patients will require different dosages and/or intervention to achieve good pain relief.
Patients should be carefully monitored:
• By mouth – Oral administration of medication is an effective, convenient and inexpensive method of medicating patients and should be used wherever possible. Medicines are easy to titrate using this route.
• By the clock - Medications for persistent pain should be administered around the clock, with additional doses as needed. This allows continuous pain relief by maintaining a constant level of drug in the body, and helps to prevent pain from recurring. The goal is to prevent rather than react to pain.
• By the ladder – The WHO ladder is a validated and effective method of ensuring therapy for pain. Medications should be administered according to the severity of the pain and drug suitability.
• On an individual basis - Individualise the pain management, different patients will require different dosages and/or intervention to achieve good pain relief.
Patients should be carefully monitored:
- For any change in pain patterns, or the development of new pain.
- To ensure adequate pain control.
- To minimise or prevent side effects from their analgesia.
https://www.appm.org.uk/
Prognostic Indicator Guidance
Assess Palliative Care Needs
https://www.eldac.com.au/tabid/4921/Default.aspx
The Symptom Assessment Scale is a patient-rated tool that clinicians use to measure the amount of distress caused by seven of the most common symptoms in palliative care.
https://ahsri.uow.edu.au/pcoc/assessment-tools/index.html
https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/palliative-and-end-of-life-care-toolkit.aspx
Palliative care may be offered to people of any age who have a serious or life-threatening illness. It can help adults and children living with illnesses such as:
- Cancer
- Blood and bone marrow disorders requiring stem cell transplant
- Heart disease
- Cystic fibrosis
- Dementia
- End-stage liver disease
- Kidney failure
- Lung disease
- Parkinson's disease
- Stroke
The Palliative care Outcome Scale (POS) is a resource for palliative care practice, teaching and research. This website has been established by a not-for-profit organisation to help advance measurement in palliative care. Free resources and training are available.
https://pos-pal.org/
https://www.hse.ie/eng/services/publications/clinical-strategy-and-programmes/palliative-care-needs-assessment-guidance.pdf
Who Gives Palliative Care?
Any health care provider can give palliative care. But some providers specialize in it. Palliative care may be given by:
- A team of doctors
- Nurses and nurse practitioners
- Physician assistants
- Registered dietitians
- Social workers
- Psychologists
- Massage therapists
- Chaplains
A multidisciplinary team can include a general practitioner,
- a surgeon,
- a medical oncologist,
- a radiation oncologist,
- a palliative care specialist,
- a nurse consultant,
- nurses,
- a dietician,
- a physiotherapist,
- an occupational therapist,
- a social worker,
- a psychologist,
- counsellor
- a pastoral care worker.
https://ww2.health.wa.gov.au/Reports-and-publications/WA-Cancer-Plan
https://ww2.health.wa.gov.au/~/media/Files/Corporate/Reports%20and%20publications/WA%20Cancer%20Plan/WA-Cancer-Plan.pdf
http://www.cheshire-epaige.nhs.uk/wp-content/uploads/2019/05/Syringe-Driver-Procedure-for-the-administrationof-medicationvia-a-subcutaneousroute-including-use-of-Mc-Kinley-T34-syringe-driver-ECT002989-1.pdf
Prescribing in Palliative Care
https://library.nshealth.ca/PalliativeCare
Palliative and End of Life Care Toolkit
https://sites.google.com/view/pc-eolcare-toolkit/home
Palliative and care at end of life resources
https://www.health.qld.gov.au/clinical-practice/guidelines-procedures/patient-safety/end-of-life/resources/palliative-and-care-at-end-of-life-resources
Effects on patient and family if diagnosis of dying is not made
- Patient and family are unaware that death is imminent
- Patient loses trust in doctor as his or her condition deteriorates without acknowledgment that this is happening
- Patient and relatives get conflicting messages from the multiprofessional team
- Patient dies with uncontrolled symptoms, leading to a distressing and undignified death
- Patient and family feel dissatisfied
- At death, cardiopulmonary resuscitation may be inappropriately initiated
- Cultural and spiritual needs not met
http://palcare.streamliners.co.nz/Care of the dying patient the last days or hours.pdf
B.C. INTER-PROFESSIONAL PALLIATIVE SYMPTOM MANAGEMENT GUIDELINES
http://www.mhpcn.net/palliative-care-toolbox
Everyone’s needs are different at the end of their life and people should be provided with care that is consistent with their preferences and values.
https://www2.health.vic.gov.au/hospitals-and-health-services/patient-care/end-of-life-care
TREATMENT AND CARE TOWARDS THE END OF LIFE
What is the Liverpool Care Pathway?
https://www.nhs.uk/news/medical-practice/news-analysis-what-is-the-liverpool-care-pathway/
- Physical. Common physical symptoms include pain, fatigue, loss of appetite, nausea, vomiting, shortness of breath, and insomnia.
- Emotional and coping. Palliative care specialists can provide resources to help patients and families deal with the emotions that come with a cancer diagnosis and cancer treatment. Depression, anxiety, and fear are only a few of the concerns that can be addressed through palliative care.
- Spiritual. With a cancer diagnosis, patients and families often look more deeply for meaning in their lives. Some find the disease brings them closer to their faith or spiritual beliefs, whereas others struggle to understand why cancer happened to them. An expert in palliative care can help people explore their beliefs and values so that they can find a sense of peace or reach a point of acceptance that is appropriate for their situation.
http://www.wmcares.org.uk/wmpcp/guide/
For about four decades, pastoral care for spiritual and existential beliefs of patients in a palliative phase has been of paramount importance. Cicely Saunders’ so-called ‘‘total pain concept’’ explicitly recognizes the spiritual and existential dimension of pain along with the somatic, psychological and social aspects. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2785892/pdf/11017_2009_Article_9121.pdf
An all-island gateway to palliative care information
http://www.professionalpalliativehub.com/homepageELDAC has produced factsheets that provide a general introduction about ELDAC and the different ways that ELDAC can help you as an individual, service, or facility.
https://www.eldac.com.au/tabid/5092/Default.aspx#LM
GP practices have a unique role in coordinating and giving good quality end of life care.
https://www.cqc.org.uk/guidance-providers/gps/nigels-surgery-38-care-advanced-serious-illness-end-life
http://www.palliativecarebridge.com.au/resources/end-of-life-resource-booklet
Patient Management
Assessment and management of physical symptoms is a major focus of palliative care, as poorly controlled pain or nausea can seriously affect a patient's quality of life. It can also reduce their ability to maintain physical functioning which then affects all aspects of their daily life.
https://www.caresearch.com.au/caresearch/tabid/132/Default.aspx
CPCRE - End of Life Pathways
Links
- Liverpool Care Pathway https://web.archive.org/web/20121106014748/http://www.mcpcil.org.uk/mcpcil/liverpool-care-pathway/
- Palliative Care Australia http://www.pallcare.org.au
https://www.health.qld.gov.au/cpcre/eol_pthwys_lnks
http://www.calderdale-carers.co.uk/
Resources Most modules include information about helpful website resources. Here is a full list for your convenience.
https://www.caresearch.com.au/tel/tabid/4658/Default.aspx
The National Guidelines for Spiritual Care in Aged Care project
https://meaningfulageing.org.au/national-guidelines-for-spiritual-care-in-aged-care-documents/
https://www.safetyandquality.gov.au/publications-and-resources/resource-library/national-palliative-care-strategy
FICA Recommendations
We recommend the following for healthcare providers taking a patient's spiritual history:
- Consider spirituality as a potentiality important component of every patient's physical well being and mental health.
- Address spirituality at each complete physical examination and continue addressing it at follow-up visits if appropriate. In patient care, spirituality is an ongoing issue.
- Respect a patient's privacy regarding spiritual beliefs; don't impose your beliefs on others.
- Make referrals to chaplains, spiritual directors, or community resources as appropriate.
- Be aware that your own spiritual beliefs will help you personally and will overflow in your encounters with those for whom you care to make the doctor-patient encounter a more humanistic one.
Seven principles of the Palliative Care Program:
- People with a life-threatening illness and their carers and families have information about options for their future care and are actively involved in those decisions in the way that they wish
- Carers of people with a life-threatening illness are supported by health and community care providers
- People with a life-threatening illness and their carers and families have care that is underpinned by the palliative approach
- People with a life-threatening illness and their carers and families have access to specialist palliative care services when required
- People with a life-threatening illness and their carers and families have treatment and care that is coordinated and integrated across all settings
- People with a life-threatening illness and their carers and families have access to quality services and skilled staff to meet their needs
- People with a life-threatening illness and their carers and families are supported by their communities.
Stroke care strategy for Victoria
https://www2.health.vic.gov.au/Api/downloadmedia/%7B012C7C05-3760-49A2-A19D-391DA710D5A7%7D
Clinical Triggers for PCMH Referral to Palliative Care
https://dev.carecompassnetwork.org/wp-content/uploads/sites/4/2017/03/CGC-CG-09-Clinical-Triggers-for-PCMH-Referral-to-Palliative-Care_UPDATE.pdf
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
https://onlinelibrary.wiley.com/doi/full/10.5694/j.1326-5377.2010.tb03822.x
GUIDANCE FOR THE MANAGEMENT OF SYMPTOMS IN ADULTS IN THE LAST DAYS OF LIFE
http://www.professionalpalliativehub.com/sites/default/files/Guidance%20for%20Symptom%20Management%20EOL%20Care%20Adults%2024%20Oct%202014%20FINAL%20RPMG%20%2B%20PHA.pdf
Care for Adults With a Progressive, Life-Limiting Illness
https://www.hqontario.ca/Evidence-to-Improve-Care/Quality-Standards/View-all-Quality-Standards/Palliative-Care
- Improving quality of life
- Relieving symptoms (for example pain) and stress
- Reaching the best possible function (for example, daily activities, physical activity, and self-care)
- Helping with decision-making about end-of-life care
- Providing emotional support to patients and their families
Most common symptoms in palliative care
https://training.caresearch.com.au/learner/course/viewcourse/lid,0/cid,10019/pid,10843
Advance care planning is defined as discussing and planning for care in the future when the person may no longer have decision-making capacity.
Lactulose
Use:
- Constipation, faecal incontinence related to constipation.
- Hepatic encephalopathy (portal systemic encephalopathy) and coma.
Dose:
Constipation:
By mouth: initial dose twice daily then adjusted to suit patient
- Neonate: 2.5 mL/dose twice a day
- Child 1 month-11 months: 2.5 mL/dose 1-3 times daily
- Child 1year-4 years: 5 mL/dose 1-3 times daily
- Child 5-9 years: 10 mL/dose 1-3 times daily
- Child 10-17 years: 15 mL/dose 1-3 times daily.
Hepatic encephalopathy:
- Child 12-17 years: use 30-50mL three times daily as initial dose. Adjust dose to produce 2-3 soft stools per day.
- Licensed for constipation in all age groups. Not licensed for hepatic encephalopathy in children.
- Increases colonic bacterial flora (macrogols do not).
- Side effects may cause nausea and flatus, with colic especially at high doses. Initial flatulence usually settles after a few days.
- Precautions and contraindications; Galactosaemia, intestinal obstruction. Caution in lactose intolerance.
- Use is limited as macrogols are often better in palliative care. However the volume per dose of macrogols is 5-10 times greater than lactulose and may not be tolerated in some patients.
- Lactulose is less effective than macrogols, or sodium picosulfate for opioid induced constipation in ambulatory palliative care patients.
- Sickly taste.
- Onset of action can take 36-48 hours.
- May be taken with water and other drinks.
- May be administered via NG tube or gastrostomy. Dilution with 2-3x the volume of water will reduce the viscosity of the solution and aid administration. As the site of action is the colon, lactulose will have a therapeutic effect if it is delivered directly into the stomach or jejunum. Administer using the above method.
- 15 mL/day is 14 kcal so unlikely to affect diabetic or ketogenic diets.
- Does not irritate or directly interfere with gut mucosa.
- Available as oral solution 10 g/15 mL or 680 mg/1 mL. Cheaper than Movicol (macrogol).
https://www.appm.org.uk/guidelines-resources/appm-master-formulary/
Managing pain and other symptoms - End of life care
https://www.nhs.uk/conditions/end-of-life-care/controlling-pain-and-other-symptoms/
https://idhdp.com/media/362593/palliat-med-2014-cleary-291-2.pdf
https://www.who.int/selection_medicines/committees/expert/19/applications/PalliativeCare_8_A_R.pdf
Management of Constipation in Adult Patients Receiving Palliative Care
https://www.gov.ie/en/collection/b34c3e-management-of-constipation-in-adult-patients-receiving-palliative-ca/
Core Palliative Care Tools
https://www.aci.health.nsw.gov.au/palliative-care-blueprint/the-blueprint/essential-components/essential-component-5
Supportive and palliative care
https://www.uhb.nhs.uk/supportive-and-palliative-care.htm
Measurement and Evaluation Tools
http://www.npcrc.org/content/25/Measurement-and-Evaluation-Tools.aspx
Symptom Management Guidelines Linked resources & tools for care providers
https://www.archhospice.ca/symptom-management
https://library.nshealth.ca/PalliativeCare
- Greater Choice for At Home Palliative Care measure
- Comprehensive Palliative Care in Aged Care measure
- PCC4U promotes the inclusion of palliative care education as an integral part of all medical, nursing, and allied health undergraduate and entry to practice training, and ongoing professional development.
- Learn More About PEPA
- The Guidelines for a Palliative Approach to Aged Care in the Community (COMPAC)
- Palliative Care Outcomes Collaboration
- Advance care planning promotes care that is consistent with a person's goals, values, beliefs and preferences.
- Clinical Evidence
- palliAGED is the palliative care evidence and practice resource for aged care.
- The education is free to use, evidence based and has been peer reviewed by doctors, nurses and allied health professionals around Australia.
- Better primary health care through team-based initiation of advance care planning and palliative care
- Resources are applicable Australia-wide for community service providers, health professionals and carers to support carers to help manage breakthrough symptoms safely using subcutaneous medicines.
- Most modules include information about helpful website resources. Here is a full list for your convenience.
- End of Life Directions for Aged Care (ELDAC)
- Palliative Care Education and Training Collaborative End of Life Law for Clinicians
- Report on research done into the awareness and attitudes of GPs towards palliative care.
- Australian Government response to the Senate Community Affairs References Committee report: Palliative Care in Australia
- The Palliative Care Needs Assessment Guidance
It’s a good idea to invite family members to the first meeting who will be part of your loved one’s support. The nurse will ask about medical history and will assess how you and your family are managing. Your nurse will also take time to help explain in more detail about your loved one’s condition, how it may change and what to do when things do change.
https://www.kindredhealthcare.com/resources/resource-center/general-services/hospice
https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/palliative-and-end-of-life-care-toolkit.aspx
Everyone’s experience of dying is different, and some people will die suddenly or unexpectedly. But in most cases, there are some signs that can help you to recognise when someone is entering the terminal phase. These include:
- getting worse day by day or hour by hour
- reduced mobility, or becoming bed-bound
- extreme tiredness and weakness
- needing assistance with all personal care
- little interest in getting out of bed
- little interest in food or drink
- difficulty swallowing oral medication
- being less able to communicate
- not wanting to socialise
- sleepiness and drowsiness
- reduced urine output
- new incontinence
- increased restlessness, confusion, and agitation
- changes in their normal breathing pattern
- noisy chest secretions
- mottled skin and feeling cold to the touch
- the person may tell you that they feel as if they are dying.
http://endoflifecareambitions.org.uk/
Licensing
- Suggested that 50% or more of medicines used in children are not licensed for purpose (even greater in palliative care)
- Off-label (e.g. not licensed in children, unlicensed route of administration, unlicensed dose, use outside licensed age limits, unlicensed indication)
- Unlicensed (any manipulation of the original dosage form; use of ‘specials’, imported medicines)
- GMC advice(prescribers must be satisfied there is sufficient evidence / experience of using an off-label or unlicensed medicine to demonstrate its safety and efficacy)
https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/212450/Liverpool_Care_Pathway.pdf
- The Liverpool care pathway is to be abolished following a government-commissioned review which heard that hospital staff wrongly interpreted its guidance for care of the dying, leading to stories of patients who were drugged and deprived of fluids in their last weeks of life.
- The government-commissioned review, headed by Lady Neuberger, found it was not the pathway itself but poor training and sometimes a lack of compassion on the part of nursing staff that was to blame, while junior doctors were expected to make life-and-death decisions beyond their competence after hours and at weekends. The review says individualised end-of-life care plans must be drawn up for every patient nearing that stage.
- "Caring for the dying must never again be practised as a tickbox exercise and each patient must be cared for according to their individual needs and preferences, with those of their relatives or carers being considered too," said Neuberger. "Ultimately it is the way the LCP has been misused and misunderstood that had led to such great problems."
https://www.health.qld.gov.au/cpcre/subcutaneous/learn_modules
Due to reports of tissue necrosis when administered subcutaneously, the following medications should be avoided via this route:
AntibioticsDiazepamChlorpromazineProchlorperazine
Education and training in palliative care
https://www2.health.vic.gov.au/hospitals-and-health-services/patient-care/end-of-life-care/palliative-care/palliative-care-education-training
End of life definition:
“Patients are ‘approaching the end of life’ when they are likely to die within the next 12 months. This includes those patients whose death is expected within hours or days; those who have advanced, progressive incurable conditions; those with general frailty and co-existing conditions that mean they are expected to die within 12 months; those at risk of dying from a sudden acute crisis in an existing condition; and those with life-threatening acute conditions caused by sudden catastrophic events.” (GMC)
What are the goals of palliative care?
The goals are:
- Relieve pain and other symptoms
- Address your emotional and spiritual concerns, and those of your caregivers
- Coordinate your care
- Improve your quality of life during your illness
Dexamethasone is the corticosteroid of choice.
Spinal cord compression or cauda equina syndrome
- dexamethasone 16mg per day
- dexamethasone 16mg per day
- dexamethasone 8mg per day
- dexamethasone 6-16 mg per day
- dexamethasone 2-8 mg per day, up to 12mg per day
- dexamethasone 4-8 mg per day
- dexamethasone 4-8 mg per day
- dexamethasone 2-4mg / day, prednisolone 15-40mg/day
*a progestogen may be more appropriate as an agent to treat anorexia for long term use, for example:Rectal discharge
megesterol acetate 80-160mg od po in the morning or medroxyprogesterone acetate 400mg od to bd po in the morning
rectal steroid preparations, eg hydrocortisone or prednisolone foam enema, or prednisolone suppositories. Once at night.
Parenteral dexamethasone:
given sc or iv, dose depends on indicationhttps://gpnotebook.com/
precipitates easily so usually best to give in separate syringe
FORMULARY AND GUIDELINES FOR MANAGEMENT
https://www.thurrockccg.nhs.uk/about-us/document-library/medicines-management/end-of-life-formulary/1558-end-of-life-formulary/file
The Dying Process
https://palliativecare.org.au/resources/the-dying-process
https://palliativecare.org.au/wp-content/uploads/dlm_uploads/2018/10/PCA_The-Dying-Process.pdf
http://www.grpcc.com.au/wp-content/uploads/2018/11/Medication-Guidelines-Algorithm-Final-3.9.18.pdf
New Ontario Palliative Care Network
https://www.ontariopalliativecarenetwork.ca/en
Palliative care enhances the quality of life of people with a life-limiting illness.
It may include:
- Help with decisions about treatments
- Expert medical care to help with pain and other symptoms at home or in hospital
- End-of-life care
- Social, psychological, emotional and spiritual support
- Support for family, friends and caregivers
- Information about financial, legal and other services
- Bereavement support
http://rcnendoflife.org.uk/symptom-management/
Palliative Care Knowledge Zone
https://www.mariecurie.org.uk/professionals/palliative-care-knowledge-zone
Palliative Care Care for Adults With a Progressive, Life-Limiting Illness
https://www.hqontario.ca/evidence-to-improve-care/quality-standards/view-all-quality-standards/palliative-care
Palliative Cancer Care Guidelines
https://emedicine.medscape.com/article/2500043-overview#showall
End-Of-Life Care - Guidelines
Palliative Sedation of Terminally ill Patients
- Drugs may be administered by intravenous, subcutaneous, oral (until the patient loses consciousness), enteral, sublingual, and rectal routs, depending on the route that has been used.
- The initial dose of sedatives may be small, with the patient able to communicate regularly. Dose of medication should be increased gradually as needed.
- Midazolam: 0.5-0.7 mg/kg, followed by infusion of 0.5-2 mg/h IV or 10 mg followed by 1-6 mg/h subcutaneously.
Everyone’s experience of dying is different, and some people will die suddenly or unexpectedly. But in most cases, there are some signs that can help you to recognise when someone is entering the terminal phase. These include:
- getting worse day by day or hour by hour
- reduced mobility, or becoming bed-bound
- extreme tiredness and weakness
- needing assistance with all personal care
- little interest in getting out of bed little
- interest in food or drink
- difficulty swallowing oral medication
- being less able to communicate
- not wanting to socialise
- sleepiness and drowsiness
- reduced urine output
- new incontinence
- increased restlessness, confusion, and agitation
- changes in their normal breathing pattern
- noisy chest secretions
- mottled skin and feeling cold to the touch
- the person may tell you that they feel as if they are dying
A person in their last days of life may not have all of these signs but they might have a few at once. Just having one or two of these signs makes it less likely that they are approaching their last days.
https://www.mariecurie.org.uk/professionals/palliative-care-knowledge-zone/final-days/recognising-deterioration-dying-phase
NICE - End of life care
https://sites.google.com/view/endoflifecareforadults/nice-end-of-life-care
https://www.helpguide.org/articles/end-of-life/late-stage-and-end-of-life-care.htm
http://palcare.streamliners.co.nz/
End of Life Issues
https://medlineplus.gov/endoflifeissues.html
https://web.archive.org/web/20191223004409/https://www.chpca.net/media/319547/norms-of-practice-eng-web.pdf
ANOREXIA/CACHEXIA SYNDROME (ACS)
- loss of body weight,
- decrease of appetite,
- reduction in the level of energy,
- fatigue,
- weakness,
- chronic nausea,
- early satiety,
- change in body image,
- psychological distress.
Intersection of Palliative Care and Spiritual Care
https://palliativecarenetwork.com/resources/?cat=intersection-of-palliative-care-and-spiritual-care
Gold Standards Framework (GSF) in primary care was developed originally back in 1998, to enable GPs and Primary Care Teams to provide top quality care for all people in their final year of life, with any condition, in any setting, at any time.
http://www.goldstandardsframework.org.uk/primary-care-training-programme
When and how to use a syringe driver in palliative care Syringe drivers are often required to provide medicines for symptom management in patients who are terminally ill. They provide continuous subcutaneous administration of medicines to enable effective symptom control when medicines given by other routes are inappropriate or no longer effective.
https://bpac.org.nz/BPJ/2012/November/syringedrivers.aspx
End-Stage Indicators
https://www.montgomeryhospice.org/health-professionals/end-stage-indicators/end-stage-indicators
In Wales, "Care Decisions for the Last Days of Life" has been developed to support care at this time, emphasizing four core principles:
- good symptom control
- good communication (with family and carers, as well as the dying person)
- holistic care (physical, psychological, social and spirirtual)
- individual care
Palliative care should also be differentiated from end-of-life care. While end-of-life care often focuses on the last months or years of the patient’s life when the illness is life-threatening, palliative care can be offered at any time from diagnosis to bereavement, as shown in the diagram below.
https://www.closingthegap.ca/guides/palliative-care-in-ontario-everything-you-need-to-know/
Not just for patients with cancer.
- The following criteria should be considered as criteria for initiating a palliative care referral:
- Ask yourself, "Would I be surprised if this patient died in the next year?" If the answer is "yes," then consider a palliative consultation.
- Patients with advancing dementia, end-stage renal failure, end-stage liver failure, congestive heart failure, advanced lung disease, advanced ALS/MS, have palliative needs
- Frequent emergency room visit for the same diagnosis
- Frequent hospital admissions for the same diagnosis in the last 30 days
- Prolonged hospital or ICU stay (7-14 days) without evidence of improvement Declining ability to complete activities of daily living
- Difficult to control physical or emotional symptoms
- Patient or family needs help making complex care decisions
- Physician needs support with difficult conversations about prognosis
Palliative Care Health Services Delivery Framework
http://www.centraleastlhin.on.ca/priorities/palliativeandendoflife/PalliativeDeliveryFramework.aspx
The principles of symptom management:
- Accurate assessment of need in the physical, psychological, social and spiritual domains is crucial if distressing symptoms are to be managed effectively
- Emphasis is on keeping the patient comfortable and not cure
- Symptoms are multidimensional, therefore management will be through a multi-professional team approach, so communication between teams is vital
- Involve the patient in decision making
- Work with the person and those close to them to ensure they understand the treatment
- Record keeping is vital as the treatment can be complex.
THE USE OF SUBCUTANEOUS HYDRATION IN PALLIATIVE CARE
Indications for use
- Dehydration contributing to poor renal clearance of opioids which are causing symptoms of toxicity.
- Dehydration due to drowsiness due to reversible causes (e.g. infection).
- Inability to swallow e.g. advanced head and neck tumour, unsuitable for gastrostomy or other artificial feeding tube.
- Symptoms due to dehydration that are not responding to other treatment (e.g. intractable nausea or vomiting, severe dry mouth or thirst).
- To meet fluid requirements in the short term when oral intake is inadequate and maintaining an intravenous line is difficult or inappropriate.
- Strong patient (or carer where the patient lacks capacity) informed preference for artificial hydration where there are no contraindications.
http://www.wmcares.org.uk/wp-content/uploads/Subcutaneous-hydration-in-palliative-care-v2.4-Final.pdf
https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/collaborative-care-and-support-planning-toolkit.aspx
The Support Needs Approach for Patients
https://thesnap.org.uk/
A tool to help patients identify and express their support needs.
https://www.uea.ac.uk/business/licensing-opportunities/healthcare-and-social-science/snap-tool-support-needs-approach-for-patients
The Coalition for Collaborative Care brings together people, including people with long-term conditions, and organisations from across the health, social care and voluntary sectors that are committed to making these changes a reality.
http://coalitionforcollaborativecare.org.uk/
The Coalition for Collaborative Care brings together people, including people with long-term conditions, and organisations from across the health, social care and voluntary sectors that are committed to making these changes a reality.
http://coalitionforcollaborativecare.org.uk/
How to use the GSF PIG in your practice.
http://www.goldstandardsframework.org.uk/How-to-use-the-GSF-PIG-in-your-practice
Palliative and End of Life Care Profiles
https://fingertips.phe.org.uk/profile/end-of-life
Guidance Classification of place of death
https://www.gov.uk/government/publications/classification-of-place-of-death
https://carehomecompanion.uk/
Research and analysis Electronic Palliative Care Co-ordination Systems (EPaCCS)
https://www.gov.uk/government/publications/electronic-palliative-care-co-ordination-systems-epaccs
https://www.skillsforcare.org.uk/Learning-development/ongoing-learning-and-development/end-of-life-care/End-of-life-care.aspx
Research and analysis End of life care: research into community-based initiatives
https://www.gov.uk/government/publications/end-of-life-care-research-into-community-based-initiatives
Official Statistics End of life care profiles: July 2019 data update
https://www.gov.uk/government/statistics/end-of-life-care-profiles-july-2019-data-update
Research and analysis The role of care homes in end of life care
https://www.gov.uk/government/publications/the-role-of-care-homes-in-end-of-life-care
https://derbyshire.eolcare.uk/
Ambitions for Palliative and End of Life Care Resources
http://endoflifecareambitions.org.uk/resources/
Late Stage and End-of-Life Care
https://www.helpguide.org/articles/end-of-life/late-stage-and-end-of-life-care.htm
End of life and bereavement
https://be.macmillan.org.uk/be/s-853-end-of-life-and-bereavement.aspx
http://www.mhpcn.net/palliative-care-toolbox
This package is a guide for services to support the effective use of the PCOC clinical assessment tools.
https://ahsri.uow.edu.au/pcoc/assessment-package/index.html
http://www.professionalpalliativehub.com/sites/default/files/RPMG%20End%20of%20Life%20Guidance%202018_0.pdf
LEAP Additional Resources
https://cerah.lakeheadu.ca/leap-additional-resources/
https://www.cfpc.ca/PalliatCareCommReferences/
An all-island gateway to palliative care information
http://www.professionalpalliativehub.com/homepage
https://www.caresearch.com.au/caresearch/tabid/3666/Default.aspx
THE DYING PROCESS
https://sites.google.com/view/10-tips-for-prescribingeolc/the-dying-process
https://www.hse.ie/eng/about/who/cspd/ncps/palliative-care/resources/needs-assessment-guidance/
PCOC Assessment Forms
https://ahsri.uow.edu.au/pcoc/forms/index.html
Understanding Cancer books
https://www.cancercouncil.com.au/publications/understanding-cancer-book/
https://www.ontariopalliativecarenetwork.ca/en/node/31896
Palliative Care Fast Facts and Concepts
https://www.mypcnow.org/fast-facts/
Palliative care
Palliative care is about improving the quality of life of anyone facing a life-threatening condition. It includes physical, emotional and spiritual care.
https://www.nhsinform.scot/care-support-and-rights/palliative-care
INCTR Palliative Care Handbook
http://www.inctr.org/resources/inctr-publications/index.html
Indian Association of Palliative Care-Standards Audit Tool
Care Decisions for the Last Days of Life Symptom Control Guidance
Palliative Care Wales
https://wales.pallcare.info/index.php?p=sections&sid=42
Palliative Care Wales
https://wales.pallcare.info/index.php?p=sections&sid=42
Royal College of Physicians
https://www.rcpjournals.org/search/palliative%20jcode%3Aclinmedicine%20numresults%3A100%20sort%3Arelevance-rank
https://www.cochranelibrary.com/content?templateType=full&urlTitle=/cdsr/doi/10.1002/14651858.CD008006.pub4&doi=10.1002/14651858.CD008006.pub4&type=cdsr&contentLanguage=
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
https://ahsri.uow.edu.au/pcoc/index.html
FAMILY MEETING:
- The Family Meeting Part 1 – Preparing
https://www.mypcnow.org/fast-fact/the-family-meeting-part-1-preparing/
- The Family Meeting Part 2 – Starting the Conversation
https://www.mypcnow.org/fast-fact/the-family-meeting-part-2-starting-the-conversation/
- The Family Meeting Part 3 – Responding to Emotion
https://www.mypcnow.org/fast-fact/the-family-meeting-part-3-responding-to-emotion/
- The Family Meeting Part 4 – Causes of Conflict
https://www.mypcnow.org/fast-fact/the-family-meeting-part-4-causes-of-conflict/
- The Family Meeting Part 5 – Helping Surrogates Make Decisions
https://www.mypcnow.org/fast-fact/the-family-meeting-part-5-helping-surrogates-make-decisions/
- The Family Meeting Part 6 – Goal Setting and Future Planning
https://www.mypcnow.org/fast-fact/the-family-meeting-part-6-goal-setting-and-future-planning/
Palliative care for the patient without cancer
https://www1.racgp.org.au/ajgp/2018/november/palliative-care-for-the-patient-without-cancer
The Symptom Assessment Scale is a patient-rated tool that clinicians use to measure the amount of distress caused by seven of the most common symptoms in palliative care. Clinicians need to know how bothered, worried or distressed patients are by each of the systems in order to effectively manage their pain. A clinician asks the patient to rate their distress relating to each of the seven symptoms on a scale from 0 to 10, 0 being absent and 10 being severe.
https://ahsri.uow.edu.au/pcoc/assessment-tools/index.html
TPS Perinatal Palliative Care and End-of-Life Web-Based Toolkit.
https://txpeds.org/palliative-care-toolkit?qt-palliative_care=5#qt-palliative_care
Together for Health - Delivering End of Life Care
http://www.wales.nhs.uk/palliativecare
The Palliative Care Handbook: A Good Practice Guide Wessex Palliative Physicians Ninth Edition 2019
http://bswformulary.nhs.uk/chaptersSubDetails.asp?FormularySectionID=21&SubSectionRef=21&SubSectionID=A100&FC=1
http://eolp.co.uk/SIXSTEPS/
http://www.sixsteps.net/
Standards and Norms of Practice
https://www.chpca.net/professionals/norms.aspx
Resources to support good palliative and end of life care
https://www.palliativecarescotland.org.uk/content/links/
An electronic version of the INCTR Palliative Care Handbook
http://inctr-palliative-care-handbook.wikidot.com/
The National GSF Centre’s guidance for clinicians to support earlier recognition of patients nearing the end of life. Thomas K. The GSF prognostic indicator guidance. End of Life Care. 2010 Feb 1;4(1):62-4.
https://www.goldstandardsframework.org.uk/cd-content/uploads/files/General%20Files/Prognostic%20Indicator%20Guidance%20October%202011.pdf
The GSF Centre in End of life Care Enabling generalist frontline staff to provide a gold standard of care for people in the last years of life: "End of Life Care is everyone's business"
http://www.goldstandardsframework.org.uk/
Signs and symptoms that suggest a person may be in the last days of life include:
- Signs such as agitation, Cheyne–Stokes breathing, deterioration in level of consciousness, mottled skin, noisy respiratory secretions and progressive weight loss
- Symptoms such as increasing fatigue, reduced desire for food and fluid, and deterioration in swallowing function
- Functional observations such as changes in communication, deteriorating mobility or performance status, or social withdrawal.
https://www.nice.org.uk/guidance/qs144
Palliative care identification tools
https://livingwellincommunities.com/2018/04/11/comparing-tools-that-can-help-to-identify-people-who-could-benefit-from-a-palliative-care-approach/
Palliative Performance Scale (PPSv2)
https://palliativecareindonesia.blogspot.com/p/blog-page.html
Symptom Management Guidelines
https://bc-cpc.ca/cpc/publications/symptom-management-guidelines/
Palliative Care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end of life. It aims to improve the quality of life of patients, their families & their caregivers.
EARLY IDENTIFICATION and PROGNOSTIC
Review of Liverpool Care Pathway for dying patients
Growth House, Inc., gives you free access to over 4,000 pages of high-quality education materials about end-of-life care, palliative medicine, and hospice care, including the full text of several books.
Ian Anderson Continuing Education Program in End-of Life Care University of Toronto
PROFESSIONAL PALLIATIVE HUB
Framework on Palliative Care in Canada
PRINCIPLES OF PALLIATIVE CARE
Palliative and End-of-Life Care in Stroke A Statement for Healthcare Professionals From the American Heart Association/American Stroke Association
https://www.ahajournals.org/doi/full/10.1161/str.0000000000000015
https://www.ahajournals.org/doi/full/10.1161/str.0000000000000015
So in the end, we have some data to suggest that IV hydration of 1 liter is unlikely to provide a meaningful benefit to most hospice patients with advanced cancer with mild to moderate dehydration (but not severe).
SYMPTOM MANAGEMENT POCKET GUIDES
Clinical Tools & Standards
PALLIATIVE AND END OF LIFE CARE TOOLKIT
- https://acclaimhealth.ca/programs/palliative-care-consultation/palliative-care-resources/
- https://www.palliativecareguidelines.scot.nhs.uk/guidelines.aspx
- https://www.ontariopalliativecarenetwork.ca/en/node/31896
- http://www.mhpcn.net/palliative-care-toolbox
- https://library.nshealth.ca/PalliativeCare
- https://www.rcgp.org.uk/endoflifecare
- https://palliativecareindonesia.blogspot.com/
https://www.rcgp.org.uk/clinical-and-research/resources/a-to-z-clinical-resources/daffodil-standards/quality-improvement-criteria-guidance.aspx
The Daffodil Standards: Self Assessment Evidence and Guidance
https://www.rcgp.org.uk/clinical-and-research/resources/a-to-z-clinical-resources/daffodil-standards/the-daffodil-standards.aspx
The eight Daffodil Standards are:
- Professional and competent staff
- Early identification of patients and carers
- Carer support – before and after death
- Seamless, planned, co-ordinated care
- Assessment of unique needs of the patient
- Quality care during the last days of life
- Care after death
- General practices being hubs within compassionate communities
Types and Variability within Illness Trajectories
OVERDOSE OPIOID PREVENTION
Palliative Performance Scale (PPS, version 2) is an 11-point scale designed to measure patients’ performance status in 10% decrements from 100% (healthy) to 0% (death) based on five observable parameters: ambulation, ability to do activities, self-care, food/fluid intake, and consciousness level.
Module 6 Recognising Deteriorating Clients
NECN - PALLIATIVE-CARE-GUIDELINES
Below you'll find links to CCPs developed by CCO for the stable, transitional, and end of life stages. Palliative Care Collaborative CCPs
- Stable Stage Palliative Care Collaborative CCPs
- Transitional Stage Palliative Care Collaborative CCPs
- End-of-Life Stage Palliative Care Collaborative CCPs
- Booklet Palliative Care Collaborative CCPs
- Condensed Version
The Palliative Performance Scale (PPS) has been shown to be both valid and useful for a broad range of palliative care patients: those with advanced cancer diagnoses or life-threatening non-cancer diagnoses in clinics, hospitals, or hospices.
Levels of Palliative Care
Hypodermoclysis, the subcutaneous infusion of fluids, is a useful and easy hydration technique suitable for mildly to moderately dehydrated adult patients, especially the elderly. The method is considered safe and does not pose any serious complications.
B.C. INTER-PROFESSIONAL PALLIATIVE SYMPTOM MANAGEMENT GUIDELINES
END OF LIFE SYMPTOM MANAGEMENT ALGORITHM
WHO - ESSENTIAL MEDICINES IN PALLIATIVE CARE
Comprehensive Advanced Palliative Care Education (CAPCE)
APPROACHING THE END OF LIFE
Patients are ‘approaching the end of life’ when they are likely to die within the next 12 months.
This includes patients whose death is imminent (expected within a few hours or days) and those with:
- advanced, progressive, incurable conditions
- general frailty and co-existing conditions that mean they are expected to die within 12 months existing conditions
- if they are at risk of dying from a sudden acute crisis in their condition
- life-threatening acute conditions caused by sudden catastrophic events.
Also applies to those extremely premature neonates whose prospects for survival are known to be very poor, and to patients who are diagnosed as being in a persistent vegetative state (PVS), for whom a decision to withdraw treatment may lead to their death. (Download)
PALLIATIVE CARE RESOURCES
Analysis of available evidence suggested 11 symptoms occurring in the advanced stages and end of life stage for the mortality conditions identified which are priorities in palliative care:
• Anorexia
• Anxiety
• Constipation
• Delirium
• Depression
• Diarrhoea
• Dyspnea
• Fatigue
• Nausea and vomiting
• Pain
• Respiratory tract secretions
Fifteen medications were identified as essential for the treatments of these symptoms.
Family and friends often ask if the person can have artificial hydration and nutrition, for example tube feeding or subcutaneous fluids. For some conditions, this is an option. But for other conditions, and often when people are in their days, there is no evidence that it helps people to live longer or improves their quality of life.
Palliative care is required for a wide range of diseases. The majority of adults in need of palliative care have chronic diseases such as cardiovascular diseases (38.5%), cancer (34%), chronic respiratory diseases (10.3%), AIDS (5.7%) and diabetes (4.6%). Many other conditions may require palliative care, including kidney failure, chronic liver disease, multiple sclerosis, Parkinson’s disease, rheumatoid arthritis, neurological disease, dementia, congenital anomalies and drug-resistant tuberculosis.
These guidelines are one of many resources available to health care professionals in Fraser Health to improve health care outcomes in hospice palliative/end-of-life care.
Fentanyl is a potent opioid analgesic; check the dose conversion carefully. 100 to 150times more potent than oral morphine. • A 25 microgram/hour fentanyl patch is equivalent to about 60mg to 90mg of oralmorphine in 24 hours.
Palliative and End of Life Care Toolkit
There is a lack of any strong evidence, therefore decisions to initiate subcutaneous (SC) hydration rests with the multidisciplinary team in discussion with the patient and family, and will vary from patient to patient depending on the estimated burden to benefit balance.
TEN STEPS TO BETTER PROGNOSTICATION
Anticipatory end of life care medication for the symptoms of terminal restlessness, pain and excessive secretions in frail older people in care homes. End of Life Journal Vol. 3, No. 3, pages 1-6)
- The decision that a person was dying was not always supported by an experienced clinician and not reliably reviewed, even if the person may have had potential to improve.
- The dying person may have been unduly sedated as a result of inappropriately prescribed medication.
- Concerns that hydration and some essential medicines may have been withheld or withdrawn, resulting in a negative effect on the dying person.
These guidelines are one of many resources available to health care professionals in Fraser Health to improve health care outcomes in hospice palliative/end-of-life care. These guidelines provide recommendations based on scientific evidence and expert clinical opinion.
STROKE AND PALLIATIVE CARE
https://sites.google.com/view/stroke-and-palliative-care/home
https://sites.google.com/view/stroke-and-palliative-care/home
All people admitted to hospital with Acute stroke should receive:
- Swallow screen
modification of diet or institution of NG feeding as appropriate within 48 hours
- Hydration Status: Maintain euvolemia.
- Assessment of continence
- Evaluation of pressure risk
- Early mobilisation where appropriate
- Occupational therapy and seating assessment
- Multidisciplinary assessment and discussion
- Assessment of mood
- Information meeting with relatives and patient
https://www.hse.ie/eng/services/publications/clinical-strategy-and-programmes/stroke-unit-management-care-bundle.pdf
Care of dying adults in the last days of life NICE guideline [NG31] Published date: December 2015
PALLIATIVE CARE IN HOSPITALS - AN OVERVIEW
Baca dulu!
SG Pall Ebook
Guideline PC
INCTR Palliative Care Handbook:
Scottish Palliative Care Guidelines
iPal
BERKSHIRE ADULT PALLIATIVE CARE GUIDELINES - END OF LIFE CARE – GL110
Palliative care helps people live as fully and as comfortably as possible with a life-limiting illness. Palliative care is for people of any age. It can be provided in your home, a hospital, a hospice or an aged care (nursing) home.
Palliative Performance Scale Population: https://eprognosis.ucsf.edu/pps.php
PALLIATIVE CARE IN DEVELOPING COUNTRIES - PRINCIPLES AND PRACTICE
From our experience at the hospice we know that organ/tissue donation can help patients and families feel comforted by knowing that they have given hope to others, and that some good has come out of their loss. However, we also realise that not everyone feels comfortable with taking such a step.
THE IAHPC MANUAL OF PALLIATIVE CARE 3RD EDITION
IAHPC List of Essential Practices in Palliative Care
Evidence-based resources for assessing pain, symptom burden, psychological and social needs, caregiver burden, and spiritual distress.
Access to key information about palliative care:
Hospice patients can experience many kinds of symptoms such as: pain, restlessness/agitation, confusion/delirium, lethargy/weakness, shortness of breath, and nausea/vomiting.
YAPALINDO
Subcutaneous hydration (previously known as hypodermoclysis) is a technique used for the subcutaneous administration of large volumes of fluids and electrolytes in order to achieve fluid maintenance or replacement. It is used in patients who are unable to tolerate sufficient oral intake and where intravenous access may be difficult to obtain or sustain, or is inappropriate.
This free online training is designed for the Australian health context, and is available to participants by simply creating an account and logging in. This project is funded by the Australian Government Department of Health and is developed by the Australian Healthcare and Hospitals Association (AHHA), with input from industry and other specialists.
In the PPS, physical performance is measured in 10% decremental levels from fully ambulatory and healthy (100%) to death (0%). These levels are further differentiated by five observable parameters: the degree of ambulation ability to do activities/extent of disease ability to do self care food/fluid intake level of consciousness
End of life is when a person is living with, and impaired by, a fatal condition, even if the trajectory is ambiguous or unknown.
Guidelines Schedule
Worldwide, a number of significant barriers must be overcome to address the unmet need for palliative care:
Pain is one of the most frequent and serious symptoms experienced by patients in need of palliative care. Opioid analgesics are essential for treating the pain associated with many advanced progressive conditions. For example, 80% of patients with AIDS or cancer, and 67% of patients with cardiovascular disease or chronic obstructive pulmonary disease will experience moderate to severe pain at the end of their lives.
Guidelines for the Management at the End of Life
https://sites.google.com/view/management-at-the-end-of-life/home
Rapid Discharge Guidance
INSPIRE SELF-CARE
Many people living with cancer experience nausea, diarrhea, and other symptoms and side effects from their treatment or disease. For healthcare providers, we offer tools for assessing and managing patients’ symptoms and side effects.
Palliative care is more than just pain relief. It includes addressing the physical, psychosocial and emotional suffering of patients with serious advanced illnesses and supporting family members providing care to a loved one.
Codeine is not generally given as a single agent when used orally as an analgesic, but is usually combined with a non-opioid and recent systematic reviews confirm that the combination of codeine and paracetamol is more effective that paracetamol alone.
http://www.geocities.ws/kaqu/simanpc/8.2%20-%20The%20management%20of%20Pain/8.2.3%20-%20Opioid%20analgesic%20therapy.htm
MANAGING SYMPTOMS FOR AN ADULT IN THE LAST DAYS OF LIFE
All nursing staff who care for dying patients have a responsibility to ensure they have enough knowledge and skills to manage the key symptoms that may occur in the last few days of life.
THE PALLIATIVE CARE HANDBOOK - 2019
Radiotherapy for the Palliation of Advanced Sarcomas—The Effectiveness of Radiotherapy in Providing Symptomatic Improvement for Advanced Sarcomas in a Single Centre Cohort
Principles of Palliative Care
- Palliative care incorporates the whole spectrum of care — medical, nursing, psychological, social, cultural and spiritual. A holistic approach, incorporating these wider aspects of care, is good medical practice and in palliative care it is essential.
- The principles of palliative care might simply be regarded as those of good clinical practice, whatever the patient’s illness, wherever the patient is under care, whatever his / her social status, creed, culture or education.
This resource has been developed for you by the Royal College of Nursing (RCN) and is designed to offer you support in your delivery of appropriate end of life care alongside your existing training.
The Palliative Performance Scale (PPS), a modification of the Karnofsky Performance Scale, is presented as a new tool for measurement of physical status in palliative care. Its initial uses in Victoria include communication, analysis of home nursing care workload, profiling admissions and discharges to the hospice unit, and, possibly, prognostication. Palliative Performance Scale (PPS): A new tool (PDF Download Available). Available from: https://www.researchgate.net/publication/14348689_Palliative_Performance_Scale_PPS_A_new_tool [accessed Mar 29 2018].
The Hospice and Palliative Nurses Association provides educational opportunities not only to our members, but to all hospice and palliative nurses and members of the nursing team.
PALLIA 10
Through early integration into the care plan of seriously ill people, palliative care improves quality of life for both the patient and the family.
𝑨 𝑮𝑶𝑶𝑫 𝑫𝑬𝑨𝑻𝑯 - 𝑷𝑬𝑹𝑺𝑷𝑬𝑪𝑻𝑰𝑽𝑬𝑺 𝑶𝑭 𝑴𝑼𝑺𝑳𝑰𝑴 𝑷𝑨𝑻𝑰𝑬𝑵𝑻𝑺 𝑨𝑵𝑫 𝑯𝑬𝑨𝑳𝑻𝑯 𝑪𝑨𝑹𝑬 𝑷𝑹𝑶𝑽𝑰𝑫𝑬𝑹𝑺
Our goal is to improve the quality of life for patients and families facing serious illnesses through education of multi-disciplinary doctors, nurses,psychologists, social workers and other allied health personnel. Developed by Stanford eCampus this FREE training portal features learning modules, resources and training materials from internationally recognized leaders in the field of Hospice and Palliative Medicine.
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. Palliative care is an essential component of comprehensive health services for NCDs.
The Dana-Farber Cancer Institute/ Brigham and Women’s Hospital Pain Management Tables and Guidelines (Pink Book) has been in use by DFCI/BWH clinicians since 1998. Widely used by the Harvard Interprofessional Palliative Care fellows and internal medicine house staff at Brigham and Women’s Hospital, the Pink Book contains useful opioid conversion tables, medication charts, and clinical pearls in the clinical management of pain.
Palliative care education and training collaborative
The Guide to Children’s Palliative Care is an essential resource for all those with an interest in planning, commissioning and delivering services and care for babies, children and young people with life-limiting and life-threatening conditions, and their families.
Among the most important projects is “3.g.i.”, which aims to integrate palliative care into the Patient-Centered Medical Home Model. CCB believes that improvement in the practice of primary palliative care—interventions delivered through primary care that aim to reduce the burden of illness associated with any type of serious chronic illness—is essential to advancing the PPS transformational agenda.
PENNINE LANCASHIRE PALLIATIVE AND END OF LIFE CARE MODEL
Clinical Practice Guidelines for Quality Palliative Care, 4th edition, create a blueprint for excellence by establishing a comprehensive foundation for gold-standard palliative care for all people living with serious illness, regardless of their diagnosis, prognosis, age or setting.
Palliative care focuses on the person and their family, and on enhancing their quality of life throughout their illness, not just at the end of life. The initiation of palliative care should not be delayed for people with a progressive, life-limiting illness if they have physical, psychological, social, or spiritual needs during treatment.
PANG Clinical Guidelines book.pallcare.info provides alternative access to the PANG guidelines 2016 (version 4). The screen layout is designed for a desktop PC, and will not work well on a small screen e.g. mobile phone. No site registration is required.
Berdoa Menutup Sedih Tanpa Biaya
Pediatric Hospice and Palliative Medicine (PHPM) is both a philosophy and an organized method for delivering competent, compassionate, and consistent care to children with chronic, complex and/or life-threatening conditions, as well as to their families.
PALLIATIVE CARE CARE FOR ADULTS WITH A PROGRESSIVE, LIFE-LIMITING ILLNESS
Demonstrate the value of your pediatric palliative care service to program stakeholders.
Palliative Sedation: Myth vs. Fact
The mission of LMHPCO is to improve the quality of hospice & palliative care in Louisiana & Mississippi.
IAN ANDERSON CONTINUING EDUCATION PROGRAM IN END-OF-LIFE CARE
New York State Palliative Care Education and Training Council
How people die remains in the memory of those who live on
Guidance At End of Life (GAEL) for Health Care Professionals
https://palliativecareindonesia.blogspot.com/p/guidance-at-end-of-life-gael-for-health.html
Hospice and palliative medicine core competencies The American Academy of Hospice and Palliative Care Medicine (AAHPM) has developed a list of core competencies for palliative care specialists (pdf).
PALLIATIVE CANCER CARE GUIDELINES
The framework describes core competences and discipline specific competences for twelve health and social care disciplines.
Beberapa simtom yang seringkali terabaikan (kurang mendapatkan perhatian):
- fatigue,
- anorexia,
- cachexia,
- dry mouth,
- cough,
- hyperhidrosis,
- pruritus.
Needs assessment forms an important part of palliative care in all settings and can improve their quality of life of adults with dementia or those who are at end-of-life.
A multi-dimensional screening questionnaire providing a profile of needs to identify patients who could benefit from additional supportive or palliative care.
Specialist palliative care services have a role in research and in knowledge generation and dissemination (NSW Health, 2007) and require funding and support to make this contribution to support overall improvement in the quality of service delivery and outcomes.
10 MYTHS ABOUT PALLIATIVE CARE
HARI PERTAMA:
HARI KEDUA :
HARI KETIGA :
WORKSHOP:
CLINICAL PRACTICE GUIDELINES FOR QUALITY PALLIATIVE CARE
In specialist settings (eg specialist palliative care services), the NAT: PD can assist in determining when complex needs have been met and act as a discharge planning tool, or to identify the need for ongoing support.
https://www.appm.org.uk/_webedit/uploaded-files/All%20Files/Event%20Resources/2020%20APPM%20Master%20Formulary%202020%20protected.pdf
There are many reliable and validated tools available to guide health professionals with symptom assessment.
Getting it right every time
A palliative care approach is more than easing the approaching death of an individual. It aims to improve the quality of life of a cared-for person who faces life-threatening illness, as well as that of their family. It does this by providing pain and symptom relief as well as spiritual and psychosocial support, from diagnosis to the end-of-life and bereavement.
Edmonton Symptom Assessment System (ESAS-r)
- Pain – grimacing, guarding against painful maneuver
- Tiredness – increased amount of time spent
- Drowsiness – decreased level of alertness
- Nausea – retching or vomiting
- Appetite – quantity of food intake
- Shortness of breath – increased respiratory rate or effort that appears to causing distress to the patient
- Depression – tearfulness, flat affect, withdrawal from social interactions, irritability, decreased concentration and/or memory, disturbed sleep pattern
- Anxiety – agitation, flushing, restlessness, sweating, increased heart rate (intermittent), shortness of breath
- Wellbeing – how the patient appears overall
- https://web.archive.org/web/20171009233613if_/http://www.palliative.org/NewPC/_pdfs/tools/ESAS-r.pdf
10 Things You May Not Know About Children’S Palliative Care
It is important to realise that everyone will die at some time – death is unavoidable. Being unavoidable, planning for death and discussing death with loved ones is a part of having a good death.
Many people have never heard of palliative care, while others mistake it for hospice. Palliative and hospice, along with curative care, are available at different points. It’s important to understand the differences between these three types of care.
FICA for Self-Assessment
The FICA tool can help you think about your personal spiritual history:
- F - Faith and Belief. Do I have a spiritual belief that helps me cope with stress? With illness? What gives my life meaning?
- I - Importance. Is this belief important to me? Does it influence how I think about my health and illness? Does it influence my healthcare decisions?
- C - Community. Do I belong to a spiritual community (church, temple, mosque or other group)? Am I happy there? Do I need to do more with the community? Do I need to search for another community? If I don't have a community, would it help me if I found one?
- A - Address in Care. What should be my action plan? What changes do I need to make? Are there spiritual practices I want to develop? Would it help for me to see a chaplain, spiritual director, or pastoral counselor?
FICA Recommendations
We recommend the following for healthcare providers taking a patient's spiritual history:
- Consider spirituality as a potentiality important component of every patient's physical well being and mental health.
- Address spirituality at each complete physical examination and continue addressing it at follow-up visits if appropriate.
- In patient care, spirituality is an ongoing issue. Respect a patient's privacy regarding spiritual beliefs; don't impose your beliefs on others.
- Make referrals to chaplains, spiritual directors, or community resources as appropriate.
- Be aware that your own spiritual beliefs will help you personally and will overflow in your encounters with those for whom you care to make the doctor-patient encounter a more humanistic one.
Four ethical principles
- Autonomy : Respect the uniqueness and dignity of each person, self, and others.
- Non-maleficence : Prevent harm and removal of harmful conditions.
- Beneficence : Act to remove harm or promote benefit.
- Justice : Treat individuals equally.
Is Palliative Care the same as Hospice Care?
Yes, the principles are the same.
- hospice means different things in different countries—it is variously used to refer to a philosophy of care, to the buildings where it is practised, to care offered by unpaid volunteers, or to care in the final days of life
- it is better to adopt and use the term palliative care
ETHICAL ISSUES AT THE END OF LIFE
- AUTONOMY—The patient’s right to self-determination
Dokter harus mendorong dialog tentang perawatan akhir hidup dan penggunaan arahan lanjut sehingga otonomi dapat dipertahankan bahkan jika kapasitas pengambilan keputusan pasien hilang.
- BENEFICENCE—Doing what is good or beneficial for the patient
Dokter harus melakukan apa yang mereka yakini sebagai kepentingan terbaik pasien, tetapi tindakan ini tidak boleh bertentangan dengan hak pasien untuk menentukan nasib sendiri.
- NONMALEFICENCE—Avoidance of infliction of intentional harm
Banyak dokter melihat partisipasi dalam bunuh diri yang dibantu dokter sebagai pelanggaran prinsip ini.
- JUSTICE—Fairness in the delivery of healthcare
Dokter harus mengadvokasi untuk perawatan pasien sekarat mereka yang adil dan tanpa diskriminasi.
- FIDELITY—Truthfulness and faithfulness in delivering healthcare
Dokter harus jujur kepada pasien sekarat mereka mengenai diagnosis dan prognosis dan mengadvokasi keinginan pasien sekarat mereka bahkan ketika kapasitas pengambilan keputusan pasien telah hilang.
Source:
JAOA • Vol 101 • No 10 • October 2001 • 617
https://www.scribd.com/document/448974599/Ethical-Issues-at-the-End-of-Life
JAOA • Vol 101 • No 10 • October 2001 • 617
https://www.scribd.com/document/448974599/Ethical-Issues-at-the-End-of-Life
The IAHPC Manual of Palliative Care 3rd Edition
Is Palliative Care the same as Hospice Care?
Yes, the principles are the same.
- hospice means different things in different countries—it is variously used to refer to a philosophy of care, to the buildings where it is practised, to care offered by unpaid volunteers, or to care in the final days of life
- it is better to adopt and use the term palliative care
EDMONTON SYMPTOM ASSESSMENT SYSTEM (ESAS-r)
Recognising that someone is entering their last year of life benefits us all.
To assist physicians in navigating the various topics associated with providing palliative care, the TPS Palliative Care and End-of-Life Web-Based Toolkit has been divided into the following sections:
Principles of a good death
- To know when death is coming, and to understand what can be expected
- To be able to retain control of what happens
- To be afforded dignity and privacy
- To have control over pain relief and other symptom control
- To have choice and control over where death occurs (at home or elsewhere)
- To have access to information and expertise of whatever kind is necessary
- To have access to any spiritual or emotional support required
- To have access to hospice care in any location, not only in hospital
- To have control over who is present and who shares the end
- To be able to issue advance directives which ensure wishes are respected
- To have time to say goodbye, and control over other aspects of timing
- To be able to leave when it is time to go, and not to have life prolonged pointlessly
Advance care planning (ACP)
Advance care planning is the process whereby patients, in consultation with healthcare professionals, family members, and other loved ones, make individual decisions about their future healthcare, to prepare for future medical treatment decisions.
These clinical assessment palliative care tools were developed or adapted by Promoting Excellence in End-of-Life Care demonstration projects and national workgroups.
Victoria Hospice offers the following useful clinical tools to help healthcare professionals in their assessment or treatment of patients facing advancing illness, death or bereavement.
PALLIATIVE PERFORMANCE SCALE (PPS V2)
In the PPS, physical performance is measured in 10% decremental levels from fully ambulatory and healthy (100%) to death (0%). These levels are further differentiated by five observable parameters:
- the degree of ambulation
- ability to do activities/extent of disease
- ability to do self care
- food/fluid intake
- level of consciousness
Falls Risk Assessment Tool (FRAT)
https://www2.health.vic.gov.au/about/publications/policiesandguidelines/falls-risk-assessment-tool
Questions we ask when we inspect
Professional and competent staff
- Do you deliver training for staff in care for advanced serious illness and end-of-life?
Early identification
- How do you identify people who may be in the last 12 months of their lives?
- How many patients who died in the last year were included on your palliative care/GSF/QOF register (key ratio)?
- How many of these had non-cancer conditions?
Carer support – before and after death
- How do you support the family and carers of patients at the end of life and in bereavement?
Seamless, planned, coordinated care
- How do you use the palliative care register and team meetings to improve coordination and communication with others involved in a person’s care? (This includes proactive referrals to services)
Quality care during the last days of life
- How many of your patients died where they wished (preferred place of care) and in each setting (home, hospital, care home, hospice, other)?
- Do you tell people when they need to seek further help and advised what to do if their condition deteriorates?
Care after death
- How do you identify unexpected deaths?
- How do you review them?
General Practice being hubs within compassionate communities
- How do you deliver services, co-ordinate and make them accessible to take account of the needs of different people, including in residential homes?
Source
https://www.cqc.org.uk/guidance-providers/gps/nigels-surgery-38-care-advanced-serious-illness-end-life
In the Australian context, symptoms that are encountered at the end of life are generally well controlled by the use of nine commonly used medications. These include:
- morphine sulphate/tartrate (an opioid);
- hydromorphone (Dilaudid, an opioid);
- haloperidol (Serenace, an antipsychotic/antiemetic);
- midazolam (Hypnovel, a short acting benzodiazepine);
- metoclopramide (Maxolon, an antiemetic);
- hyoscine hydrobromide (Hyoscine, an antimuscarinic /antiemetic);
- clonazepam (Rivotril, a benzodiazepine);
- hyoscine butylbromide (Buscopan, an antimuscarinic); and
- fentanyl (a narcotic).
https://www.health.qld.gov.au/cpcre/subcutaneous/guidelines
This site is part of the Palliative Care Matters network of sites. It is aimed at health-care professionals working in the palliative care field.
Advance Care Planning helps you to consider and plan for future medical care.
https://planningaheadtools.com.au/advance-care-planning
Advance care planning companion guides
Working in palliative care is stressful, although possibly no more than in other specialties.
Causes of stress in palliative care
- organizational
o poor administration
o lack of goal definition
o inadequate funding for infrastructure, personnel, medications
o lack of resources, poor allocation
o failure to recognize clinical team’s achievements
o no opportunity to develop new skills
- team
o poor leadership
o poor definition of goals
o unreasonable clinical workloads
o reimbursement issues
o poor communication
o role ambiguity: interdisciplinary conflict
- patients
o difficult patients
o difficult dysfunctional families
o emotional attachment to patients
- unrealistic goals
o attempting to solve all problems
o attempting to deal with long-standing family problems
- personal stresses
o personal
o marital
o family
In practice, most of the stress relates to unrealistic goals and personal stresses.
Skala Nyeri Abbey adalah instrumen yang dirancang untuk membantu dalam penilaian nyeri pada pasien yang tidak dapat dengan jelas mengartikulasikan kebutuhan mereka, misalnya, pasien dengan demensia, masalah kognitif atau komunikasi.
https://www.apsoc.org.au/PDF/Publications/APS_Pain-in-RACF-2_Abbey_Pain_Scale.pdf
https://www.apsoc.org.au/PDF/Publications/APS_Pain-in-RACF-2_Abbey_Pain_Scale.pdf
TRANSFORMING END OF LIFE CARE IN ACUTE HOSPITALS
The route to success in end of life care – achieving quality in acute hospitals (2010) highlighted best practice models developed by acute hospital trusts and supported by The National End of Life Care Programme (now part of NHS Improving Quality). It provided a comprehensive framework to enable acute hospitals to deliver high quality person centred care at the end of life. https://www.england.nhs.uk/wp-content/uploads/2016/01/transforming-end-of-life-care-acute-hospitals.pdf
THE RESPONSIBILITIES OF A FAMILY CAREGIVER
Core Palliative Care Tools
The set of tools and resources provided is not intended to be exhaustive, nor is any one tool specifically recommended.
https://www.aci.health.nsw.gov.au/palliative-care-blueprint/the-blueprint/essential-components/essential-component-5#resource-291960
Peradaban Pelayanan Kesehatan
(Secuil Pemikiran yang Bukan Filosofis)
