1. Directly – to provide direct management and support of patients and families/whānau where more complex palliative care need exceeds the resources of the generalist provider.
   

   Specialist palliative care involvement with any patient and the family can be continuous or episodic depending on the changing need. Complex need in this context is defined as a level of need that exceeds the resources of the generalist team – this may be in any of the domains of care – physical, psychological, spiritual, etc.

2. Indirectly – to provide advice, support, education and training of other health professionals and volunteers to support the generalist provision of palliative care provision.

• The EAPC also recommends that sedative use for imminently dying patients should be regularly monitored, with patient comfort being the primary parameter, if this is the aim. All records examined for patients receiving CSCI midazolam demonstrated monitoring of patient comfort, with no evident differences in approach between dosage levels.
  ps-pc01.pdf
• The EAPC position paper states that euthanasia is not a part of palliative care. Certainly, even the best palliative care model or service cannot prevent patients sometimes asking for hastened death. However, there is a fundamental difference in the approach to these patients between euthanasia and palliative care. Proponents of the legalization of euthanasia take the request of the patient as the point of reference of the patient’s autonomy and try to comply with this personal preference. Palliative care experts should also acknowledge the requests for euthanasia in those patients who express them, but make this the starting point of holistic care, beginning with comprehensive assessment and communication and trying to understand the motivation and attitude behind the patient’s wish.
  ps-pc02.pdf
• Ethical dilemmas associated with sedation in end-of-life care can be usefully illuminated by carefully designed empirical studies enabling international comparisons.
  ps-pc03.pdf
• Initiating PS without palliative medicine involvement is potentially hazardous. Palliative medicine consultation has been demonstrated to elicit previously undocumented diagnoses (especially delirium), ands uggest multiple management strategies in advanced cancer, even within tertiary cancer centers. A dilemma in decision making arises where there is a lack of accessto, or awareness of, specialized interventions including palliative medicine, psychiatry, interventional pain management, and spiritual care. Non-palliative medi-cine physicians need to have insight into their own therapeutic limitations, whilst palliative medicine physicians should be available to provide support via telephone or video conference to isolated clinicians.
  ps-pc04.pdf
• Key recommendations of this framework are that palliative sedation is potentially indicated for patients with intolerable distress resulting from refractory symptoms, and who have an expected prognosis of hours or days at most.
  ps-ps05.pdf

“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 and their caregivers”.

• "Some ways of opening up a discussion about deteriorating health"
• "What do you know about your health problems and what do you think might happen in future?"
• "If you did get more unwell, what would be the most important things for you and your family?"
• "Is there anything that is particularly important for you or your family that we should know about?"
• "Sometimes people choose some family members or close friends to make decisions for them if they get less well……Is that something you’ve thought about? Have you talked to your family/ friends about it?"
• "I am glad you feel better and I hope you will stay well, but I am worried about what might happen if …………"
• "Can we talk about how we might cope with not knowing exactly what will happen and when? What would be the best way for us to talk about that?"
• "I wish we had more treatment for…..could we talk about what we can do if that is not possible/ is not going to help you?"

https://diigo.com/0hubz6

Anticipatory in Palliative Care
https://bit.ly/AnticipatoryinPalliativeCare

• "People welcome opportunities to discuss their future health and care with professionals but will struggle if they are expected to participate in making explicit advance care plans for situations they cannot relate to or about unknown future circumstances.
• When people are told that their health is deteriorating, they become more distressed if their fears about how to handle an uncertain future are not addressed during discussions about treatment and care.
• Calls for more realistic medicine aim to reduce burdensome interventions that are of little benefit and not in line with people’s preferences.
• This depends on professionals, people living with advanced illnesses, and the wider community developing new ways of exchanging knowledge, perspectives, and information and embracing a degree of uncertainty."

https://diigo.com/0huc0x

Palliative care not only improves the quality of life of patients and their families, reducing mental and physical distress and discomfort, but also can help patients live longer. The prolonged survival is thought to be due to improved quality of life, appropriate administration of disease-directed treatments, and early referral to hospice for intensive symptom management and stabilization.
Use this discussion and the resulting services as an opportunity to:

• Assess and manage poorly controlled physical, psychological, social, and spiritual stressors.
• Understand your illness, its expected trajectory, and treatment options.
• Explore your hopes, worries, goals, and values; cultural or religious beliefs that impact your care or treatment decisions; treatments you may or may not want; what quality of life means to you.
• Discuss and document your health care proxy and end of life preferences, including medical interventions you do or do not want.

It is never too early to ask how palliative services can help you or your loved one live well.
https://www.health.harvard.edu/

“Perawatan paliatif adalah perawatan holistik aktif individu di segala usia dengan penderitaan serius yang berkaitan dengan kesehatan karena penyakit parah, dan terutama mereka yang mendekati akhir kehidupan. Ini bertujuan untuk meningkatkan kualitas hidup pasien, keluarga mereka dan pengasuh mereka ”.

• 1. This results in prolongation of ‘vegetative life’ that may be a source of misery for everyone, especially for the patient and the family.
• 2. There is a lowering of ‘dignity of death’ due to futile invasive procedures and unnecessary treatment.
• 3. There may not be any chance of improvement or survival leading to wastage of resources.
• 4. It may be a significant burden for the family or society–physically, financially and psychologically.
• 5. There may be situation where limited resources may be denied to a more ‘deserving salvagable individual’ because they are ‘in use’ for a vegetative individual.
• 6. In some specific situations, there may be need for withdrawing assisted respiratory support; e.g., in cases of brain-stem death that is certified by a board of medical experts.

• Dexamethasone may be given by infusion but may need to be given in a separate syringe driver/pump or as a stat subcutaneous dose depending on volume. If volume of a stat injection of dexamethasone would be more than 2ml, then the same injection can be split between two different sites e.g. left arm and right arm to allow more comfortable once daily administration.
• It may be appropriate to stop corticosteroids in the last days of life unless they have been essential in achieving good symptom control for the patient e.g. to manage headaches, seizures or pain.

http://www.wmcares.org.uk/wmpcp/guide/corticosteroids/withdrawal/

•     ☛ Bed bound
•     ☛ Semi-comatose
•     ☛ Only able to take sips of fluids
•     ☛ No longer able to take oral medication

•     ☛ Weight loss >10% over 6 months
•     ☛ General physical decline
•     ☛ Serum albumin <25g/l
•     ☛ Dependence in most activities of daily living (ADLs)
•     ☛ Reducing performance status e.g. spending more than 50% of time in bed.

Palliative care is not about healing,

but about providing comprehensive care and support to those with incurable, life-threatening diseases. The intention is for palliative care to envelop patients and their families like a cloak (lat. pallium = mantle). Finding a satisfactory means of achieving this is a major challenge facing society.

https://www.akademienunion.de/fileadmin/

Performance Status and Functional in Palliative Care
https://bit.ly/PerformanceStatusPC

• Fear of upsetting patients who are comforted by the familiarity of their family doctor
• Not wanting to be perceived as giving up on or abandoning patients
• Seeing referral as an admission of failure in looking after a patient, and
• Low awareness of the potential benefits to patients and caregivers.

1. controlling symptoms
2. independence
3. emotional, spiritual and cultural wellbeing
4. planning for the future
5. caring for patient's family and carers.

•     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
•     Occupational therapy, physiotherapy and social work
•     Music therapy
•     Support for family, friends and caregivers
•     Trained volunteers to visit with patients
•     Information about financial, legal and other services
•     Bereavement support

1. Palliative care and hospice patients receive a comprehensive assessment (physical, psychological, social, spiritual and functional) soon after admission.
2. Seriously ill palliative care and hospice patients are screened for pain, shortness of breath, nausea, and constipation during the admission visit.
3. Seriously ill palliative care and hospice patients who screen positive for at least moderate pain receive treatment (medication or other) within 24 hours.
4. Patients with advanced or life-threatening illness are screened for shortness of breath and, if positive to at least a moderate degree, have a plan to manage it.
5. Seriously ill palliative care and hospice patients have a documented discussion regarding emotional needs.
6. Hospice patients have a documented discussion of spiritual concerns or preference not to discuss them.
7. Seriously ill palliative care and hospice patients have documentation of the surrogate decision-maker’s name (such as the person who has healthcare power of attorney) and contact information, or absence of a surrogate.
8. Seriously ill palliative care and hospice patients have documentation of their preferences for life-sustaining treatments.
9. Vulnerable elders with documented preferences to withhold or withdraw life-sustaining treatments have their preferences followed.
10. Palliative care and hospice patients or their families are asked about their experience of care using a relevant survey.

• We will never understands every aspect of one another’s lives, faith, culture, professional requirements, but the most important thing to remember is to ask.
• If we ask and see to understand the reasons why, then we can begin to respond with respect and compassion.

Four categories of drugs are expected to be related to the terminal illness and related conditions and should be paid for by the hospice.

• Analgesics
• Antiemetics
• Laxatives
• Anti-anxiety meds

• Opioid: The appropriate drug and dose should be chosen for the individual. Morphine sulphate is the usual drug of choice for subcutaneous (SC) administration, unless the patient is already maintained on an alternative opioid or is in renal failure. Note the highest concentration of injectable morphine sulphate is 30mg/ml therefore a maximum PRN injection dose is 60mg (2mls). Diamorphine should be used for higher doses.
• Antiemetic: The appropriate drug should be chosen for the individual. Tailor the anti-emetic choice based on the likely cause. Haloperidol is the preferred first line anti-emetic unless there is a history of Parkinson’s disease or seizures
• Sedative: midazolam is the usual first line drug for restlessness/anxiety at the end of life. Haloperidol or levomepromazine should be used (instead of midazolam) for delirium/hallucinations.
• Anticholinergic for secretions: hyoscine butylbromide is the first line anti-cholinergic.

1. Think- about the future - what is important to you, what you want to happen or not to happen if you became unwell.
2. 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.
3. Record- write down your thoughts as your own ACP, including your spokesperson and store this safely.
4. 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).
5. Share this information with others who need to know about you, through your health records or other means, and review it regularly.

http://cdhb.palliativecare.org.nz/index.htm?toc.htm?4151.htm

• 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.

• 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

• In the cancer population, its prevalence is over 75% for those with advanced disease.
• In other palliative conditions, it is also a frequent symptom though often underestimated.
• A systematic review reported a prevalence of pain at 20-78% (median 41) in CHF patients,
• 21-77% (median 68) in COPD patients,
• and 21-64% (median 52) in CRF patients.
• Additionally, patients with neurological palliative conditions,
• such as stroke or ALS, may also experience significant level of pain.
• It has been shown that 68% of end of life stroke patients have symptoms or manifestations of pain.

• Categorization of pain is based on underlying biological mechanism
  
  • nociceptive pain - due to chemical, thermal, and/or mechanical damage activating nociceptors and inflammatory response
    
    • somatic pain - due to damage in peripheral tissues
    • visceral pain - due to damage in visceral organs
    • referred pain - visceral pain that is mistakenly localized to particular somatic location
  • neuropathic pain - due to damage to or disorders of central or peripheral nervous system

• cannot participate in their own treatment planning
• cannot give informed consent to treatment
• cannot make suitable plans for themselves and their families

Palliative care aims to address:

• physical, psychological, social, spiritual and practical expectations and needs
• loss, grief and bereavement
• preparation for and management of self-determined life closure, and the dying process

• Trigger 1 – The surprise question;
• Trigger 2 – General indicators of decline;
• Trigger 3 – Specific clinical indicators related to certain conditions.

• (a) improve delivery of psychosocial, spiritual and culturally safe care;
• (b) enhance coordination of care; and
• (c) facilitate supportive work environments.

1. should have a good understanding of the principles and practices of care at the end of life;
2. recognise individuals dying following a stroke who may benefit from palliative care and;
3. should facilitate access to expert and coordinated palliative care services for these individuals.

• Talking about patient preferences, needs, and values as a guide to medical decisions;
• Discussing what aspects of recovery are most important to the patient/family;
• Having effective, sensitive discussions about the prognosis of the patient, how to deal with physical or mental losses from a stroke, and, if necessary, of dying, among other serious topics;
• Offering guidance through choices about life-sustaining treatment options, addressing pros and cons of cardiopulmonary resuscitation, ventilators, feeding tubes, surgery, do-not-resuscitate orders, do-not-intubate orders, and natural feeding;
• Knowing the best treatment options for common post-stroke symptoms, including pain, other physical symptoms, and psychological problems, such as depression and anxiety;
• Engaging a palliative care specialist if complex issues arise; and
• Helping preserve dignity and maximizing comfort throughout the course of a stroke, including during the dying process and when nearing death.

• the safe conversion between different opioids
• enable the safe administration of the same opioid by a different route
•  to calculate and check the accuracy of “PRN” doses of opioids for patients receiving regular opioids

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://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

Five Things Physicians and Patients Should Question

1. 1. Don’t delay palliative care for a patient with serious illness who has physical, psychological, social or spiritual distress because they are pursuing disease-directed treatment.
2. 2. Don’t delay advance care planning conversations.
3. 3. Don’t use oxygen therapy to treat non-hypoxic dyspnea.
4. 4. Don’t use stool softeners alone to prevent opioid induced constipation.
5. 5. Don’t transfuse red blood cells for arbitrary hemoglobin or hematocrit thresholds in the absence of symptoms, or if no benefit was perceived from previous transfusions.

https://choosingwiselycanada.org/palliative-care/

• 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)

• 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

Palliative care referral may be for:

• assessment 
• advice 
• consultation 
• support 
• direct patient care 
• assistance with discharge planning.

https://ww2.health.wa.gov.au/

• 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.

• 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.

1. Pertanyaan Kejutan: "Apakah Anda akan terkejut jika pasien ini mati dalam beberapa bulan, minggu, hari berikutnya"?
2. Indikator umum penurunan - kemunduran, meningkatnya kebutuhan atau pilihan tanpa perawatan aktif lebih lanjut.
3. Indikator klinis spesifik terkait dengan kondisi tertentu.

A MODEL TO GUIDE HOSPICE PALLIATIVE CARE
© 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

INTERNATIONAL ASSOCIATION FOR HOSPICE AND PALLIATIVE CARE (IAHPC) LIST OF ESSENTIAL DRUGS FOR PALLIATIVE CARE
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://drive.google.com/file/d/1WPqCUzQI4idXIGtlC-p5cTUX7CNbST1q/view?usp=sharing

Anticipatory Care Planning is about helping people think ahead. ACP is a process that helps people make choices about their future care. ACP is also about knowing how to use services better. Planning ahead can help people to be more in control and more able to manage changes in their health and wellbeing. It also helps people tell others about what matters most to them.
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

Discussing Values, Goals, and Preferences
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.

https://www.goldstandardsframework.org.uk/How-to-use-the-GSF-PIG-in-your-practice

A QUICK GUIDE to Identifying Patients for Supportive and Palliative Care
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

Decisions relating to Cardiopulmonary Resuscitation (3rd edition - 1st revision )
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.

http://www.healthcareimprovementscotland.org/our_work/patient_experience/palliative_care/palliative_care_indicators.aspx

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/

THE FIVE DYSFUNCTIONS OF A TEAM

1. Absence of trust — unwilling to be vulnerable within the group
2. Fear of conflict — seeking artificial harmony over constructive passionate debate
3. Lack of commitment — feigning buy-in for group decisions creates ambiguity throughout the organization
4. Avoidance of accountability — ducking the responsibility to call peers on counterproductive behavior which sets low standards
5. Inattention to results — focusing on personal success, status and ego before team success

Lima Disfungsi Tim

1. Tidak adanya kepercayaan — tidak mau rentan dalam kelompok
2. Takut akan konflik — mencari keharmonisan artifisial dari debat konstruktif yang penuh gairah
3. Kurangnya komitmen — berpura-pura menerima keputusan kelompok menciptakan ambiguitas di seluruh organisasi
4. Menghindari pertanggungjawaban — menghindari tanggung jawab untuk memanggil teman sebaya pada perilaku kontraproduktif yang menetapkan standar rendah
5. Tidak memperhatikan hasil — berfokus pada kesuksesan pribadi, status, dan ego sebelum kesuksesan tim

Source:
The Five Dysfunctions of a Team
Author Patrick Lencioni
Published 2002 (Jossey-Bass)
https://en.wikipedia.org/wiki/The_Five_Dysfunctions_of_a_Team

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

The Medication Appropriateness Index

•     ☛ 1. Is there an indication for the drug?
      ☛ 2. Is the medication effective for the condition?
      ☛ 3. Is the dosage correct?
      ☛ 4. Are the directions correct?
      ☛ 5. Are the directions practical?
      ☛ 6. Are there clinically significant drug-drug interactions?
      ☛ 7. Are there clinically significant drug-disease/condition interactions?
      ☛ 8. Is there unnecessary duplication with other drugs?
      ☛ 9. Is the duration of therapy acceptable?
      ☛ 10. Is this drug the least expensive alternative compared with others of equal usefulness?

Holly M. Holmes, Reconsidering Medication Appropriateness for Patients Late in Life. ARCH INTERN MED. 2006: VOL 166, MAR 27; 605-609.
https://cdn.ymaws.com/www.nehospice.org/resource/resmgr/imported/11SessionF2handouts.pdf

Pharmacokinetic considerations and recommendations in palliative care, with focus on morphine, midazolam and haloperidol
https://www.tandfonline.com/doi/full/10.1080/17425255.2016.1179281

Once-Daily Opioids for Chronic Dyspnea: A Dose Increment and Pharmacovigilance Study
https://www.jpsmjournal.com/article/S0885-3924(11)00065-0/fulltext

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

Good Life, Good Death, Good Grief wants to address this. We want to create a Scotland where everyone knows how to help when someone is dying or grieving.
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/

Imminence of Death
https://bit.ly/Imminenceofdeath

Together for Short Lives is committed to ensuring high standard, equitable care for all children and families through supporting children’s palliative care networks and by hosting regular network summit meetings.
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 solely on their diagnosis or other fixed criteria
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

PALLIATIVE AND END OF LIFE CARE GUIDELINES - Symptom control for cancer and non-cancer patients
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

Electronic Proactive Assesment and Information Guide for End of Life (EPaige)
http://www.cheshire-epaige.nhs.uk/document-library/

The End of Life Partnership
http://eolp.co.uk/

Restlessness and agitation

• Exclude reversible causes e.g. urinary retention, drug therapy, hypercalcaemia
• Treat contributory symptoms e.g. pain. Ensure calming environment. If symptoms persist consider drug therapy:
• Midazolam 2.5-5mg stat and 10-120mg/24hrs (SC)
• Levomepromazine 12.5-25mg stat and 12.5-150mg/24hrs (SC)
• Haloperidol 1.5-3mg stat and 5-10mg/24hrs (SC)
• Phenobarbitone 100-200mg stat (IM) and 600mg-1200mg/24hrs (under specialist palliative care supervision only)

https://www.thurrockccg.nhs.uk/about-us/document-library/medicines-management/end-of-life-formulary/1558-end-of-life-formulary/file

Alternatives to regular medication normally given via a syringe pump when this is not available
https://www.palliativecareguidelines.scot.nhs.uk/guidelines/symptom-control/alternatives-to-regular-medication-normally-given-via-a-syringe-pump-when-this-is-not-available.aspx

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

INCTR Palliative Care Handbook
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/

Build your Palliative Care Knowledge
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

1. 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.
2. 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.
3. 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.
4. 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.
5. 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.
6. 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.
7. 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.
8. 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.
9. 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.
10. 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.

https://cole.netreturns.biz/healthtools/endOfLife.html

Multiple Choice Questions
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/

The medications on the End of Life (Terminal) Symptom Management Medications for Older Australians Living in the Community are:
·         Clonazepam liquid* (oral drops) – 2.5mg/ml

·         Clonazepam injection* – 1mg/ml

·         Fentanyl citrate injection** – 100mcg/2ml

·         Haloperidol injection – 5mg/ml

·         Hydromorphone injection – 2mg/ml

·         Hyoscine butylbromide (Buscopan) injection*** – 20mg/ml

·         Metoclopramide injection – 10mg/2ml

·         Midazolam injection** – 5mg/ml

·         Morphine sulphate injection – 10mg/ml AND 30mg/ml

* Non-PBS unless for seizure control
** Not on the PBS
*** Non-PBS unless for colicky pain. Unrestricted via the Repatriation Schedule
https://palliativecare.org.au/new-medication-list-for-gps-supporting-people-who-wish-to-die-at-home

Syringe drivers are often used in the last few weeks and days of life but they can be useful for managing symptoms at any stage, to treat the following symptoms:

• pain
• feeling sick and vomiting
• seizures (fits)
• agitation
• excess respiratory secretions (too much fluid in the lungs or throat)
• breathlessness.

https://www.mariecurie.org.uk/help/support/terminal-illness/medication-pain-relief/syringe-drivers

SPOTLIGHT: Palliative care beyond cancer: Recognising and managing key transitions in end of life care: Kirsty Boyd, Scott A Murray BMJ | 25 SEPTEMBER 2010 | VOLUME 341
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/

Practice review How to implement the Gold Standards Framework to ensure continuity of care
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

https://www.iwantgreatcare.org/

• Palliative Care Matters

https://www.pallcare.info/

• Palliative Care Guidelines

https://book.pallcare.info/

• Palliative Care Wales

https://wales.pallcare.info/index.php

• Feelings and behaviors that result from a particular loss
• Patient retains capacity for pleasure
• Comes in waves
• Passive wishes for death
• Able to look forward to the future

• Feelings of worthlessness, guilt, hopelessness, helplessness, and thoughts of death with impairment of functioning lasting at least two weeks
• Nothing is enjoyable
• Constant
• No sense of anything to look forward to

Common Symptoms in End-of-Life Care

Drowsiness
Plan visits and activities for times when the patient is most alert.

Becoming unresponsive
Many patients are still able to hear after they are no longer able to speak, so talk as if your loved one can hear.

Confusion about time, place, identity of loved ones
Speak calmly to help re-orient your loved one. Gently remind them of the time, date, and people who are with them.

Loss of appetite, decreased need for food and fluids
Let the patient choose if and when to eat or drink. Ice chips, water, or juice may be refreshing if the patient can swallow. Keep your loved one's mouth and lips moist with products such as glycerin swabs and lip balm.

Loss of bladder or bowel control
Keep your loved one as clean, dry, and comfortable as possible. Place disposable pads on the bed beneath them and remove when they become soiled.

Skin becoming cool to the touch
Warm the patient with blankets but avoid electric blankets or heating pads, which can cause burns.

Labored, irregular, shallow, or noisy breathing
Breathing may be easier if the patient's body is turned to the side and pillows are placed beneath their head and behind their back. A cool mist humidifier may also help.

Source: National Cancer Institute

SPICT™ is a clinical tool used by health and care professionals in many countries to help them identify people whose health is deteriorating due to one or more advanced, progressive conditions or a new life-threatening illness. Many of people (particularly if they have organ failure or multimorbidity) are still identified too late to benefit from well-coordinated palliative care integrated with appropriate treatment of their underlying illnesses. SPICT™ helps clinicians decide when it is time to look for unmet holistic care needs.
https://www.spict.org.uk/using-spict/

Palliative Care Matters
https://www.pallcare.info/

An eBook of the PANG Guidelines 4th Edition (suitable for smart phones and portable devices) will be available shortly. Further details will follow when available.
https://book.pallcare.info/index.php?wpage=2

Tricyclic antidepressants and anti-seizure medications can each lessen nerve pain because they change the way pain sensations travel to the brain.
https://www.webmd.com/palliative-care/pain-medications-medications-for-palliative-care#1

The common physical problems which need to be assessed and planned for include:

• Pain
• Delirium / agitation
• Dyspnoea
• Respiratory secretions
• Mouth care and skin care
• Bladder and bowel care
• Nausea and vomiting.

https://www.caresearch.com.au/caresearch/ClinicalPractice/Physical/EndofLifeCare/SymptomManagementattheEndofLife/tabid/741/Default.aspx

There is a body of good evidence (mostly from the USA) which suggests that the factors that are most important to patients and families at the end of life are:

https://www.caresearch.com.au/caresearch/ClinicalPractice/Physical/EndofLifeCare/PrinciplesofGoodEndofLifeCare/tabid/739/Default.aspx

Short animations: Aged Care Quality Standards/Spiritual Care
Others:
https://meaningfulageing.org.au/product/short-animations-aged-care-quality-standards-spiritual-care/

In this section you can view and download all of our factsheets, research and publications free of charge.
https://compassionindying.org.uk/library/

Relatives can often become distressed when death approaches and don’t always understand the rationale around some of the decisions being made around nutrition and hydration, for instance why a drip is not being set-up or a water jug is removed. To them the withdrawal of these can seem like a neglect in care. It’s important to be sensitive and explain why nutrition and hydration is no longer required. They may be upset and may not understand at first, so it is important to persevere and remain calm. If you feel overwhelmed then seek support from a colleague.
http://rcneolnutritionhydration.org.uk/nutrition-and-hydration/

Delivering Pediatric Palliative Care: From Denial, Palliphobia, Pallilalia to Palliactive
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6162556/

What is hospice care? Hospice care aims to improve the quality of life and wellbeing of adults and children with a life-limiting or terminal condition. It helps people live as fully and as well as they can to the end of their lives, however long that may be.
https://www.hospiceuk.org/about-hospice-care/what-is-hospice-care

Mungkin dikiranya saya Ngarang! Timing in relation to death. Pasien seperti itu meskipun diberi lagi KEMOTERAPI SEGALON, PASTI TIDAK AKAN SEMBUH. Pasien akan tetap meninggal dunia.
Pelayanan Perawatan Paliatif dan Akhir Hayat akan tetap ada meskipun Kiamat sudah Mendekat. Siapa pun yang merasa mampu menghalanginya pasti itu karena sikap arogan. 

The Scottish Palliative Care Guidelines reflect a consensus of opinion about good practice in the management of adult patients with life limiting illness. They are designed for healthcare professionals from any care setting who are involved in supporting people with a palliative life-limiting condition.
https://www.palliativecareguidelines.scot.nhs.uk/

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

http://www.pikespeakhospice.org/healthcare-professionals/palliative-care-partnership/indications-for-palliative-consult

SYMPTOM MANAGEMENT OF ASCITES
https://t.me/c/1305911983/10


The Palliative and End of Life Care Toolkit may be used by any general practice in the UK. The resources it provides can be used by healthcare professionals, informal carers, patients, and those close to someone nearing the end of life.
https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/palliative-and-end-of-life-care-toolkit.aspx

Palliative Care Toolkit Best-practice tools from around the world are provided here to support primary care providers with palliative care delivery.
https://www.ontariopalliativecarenetwork.ca/en/node/31896

Download from folder
https://drive.google.com/drive/folders/18Tmx41znJvuiJRqxSIdXEcUeV6loqI6I?usp=sharing

PALLIATIVE CARE AIDE MEMOIRE
The purpose of this aide memoire is to act as a prompt when assessing and reviewing patients with palliative and end of life care needs across conditions e.g. cancer /Advanced Respiratory Disease /Advanced Cardiac Disease /Advanced Neurological Disease/Advanced Renal Disease/ Stroke/ Dementia Other Advanced Progressive Disease.
http://www.professionalpalliativehub.com/sites/default/files/Palliative%20Care%20Aide%20Memoire%20%28NI%29_0.pdf

Many people mistakenly believe that you can only receive palliative care when other treatments are no longer possible. Actually, palliative care can be provided to people of any age and at any stage of their illness.
https://www.hse.ie/eng/about/who/cspd/ncps/palliative-care/

Where palliative care consultation is available, referral to this service should be considered early on in the patient’s care if there are complex needs. Primary care clinicians should begin palliative care planning early through palliative care conversations with their patients.
https://www.icsi.org/guideline/palliative-care/

Palliative Care Aide Memoire

The process of assessment can help to produce a common understanding of needs. The assessor should be any experienced health or social care professional, who normally undertakes assessments as part of their role.

http://www.professionalpalliativehub.com/guidelines/northern-ireland-palliative-care-tools-guidance/assessment-palliative-care-services

•     pain
•     fatigue
•     frustration
•     difficulty breathing
•     difficulty swallowing
•     lack of appetite
•     constipation
•     hope and hopelessness
•     confusion.

•     pain
•     agitation
•     nausea and vomiting
•     breathlessness
•     excessive respiratory secretions.

• The patient is unable to take medicines by mouth due to nausea and vomiting, severe oral lesions, e.g. mucosal ulceration, dysphagia, weakness, sedation or coma
• There is poor absorption of oral medicines
• Pain is not able to be controlled using orally administered medicines
• There is a malignant bowel obstruction and further surgery is inappropriate (therefore avoiding the need for an intravenous infusion or the insertion of a nasogastric tube)
• The patient does not wish to take regular medicine by mouth

• http://p2ptm.kemkes.go.id/uploads/VHcrbkVobjRzUDN3UCs4eUJ0dVBndz09/2017/08/PETUNJUK_TEKNIS_PROGRAM_PALIATIF_KANKER_ANAK.pdf
• http://p2ptm.kemkes.go.id/uploads/VHcrbkVobjRzUDN3UCs4eUJ0dVBndz09/2017/08/PETUNJUK_TEKNIS_PALIATIF_KANKER_PADA_DEWASA.pdf
• http://p2ptm.kemkes.go.id/uploads/VHcrbkVobjRzUDN3UCs4eUJ0dVBndz09/2017/08/PEDOMAN_NASIONAL_PROGRAM_PALIATIF_KANKER.pdf
• http://p2ptm.kemkes.go.id/uploads/VHcrbkVobjRzUDN3UCs4eUJ0dVBndz09/2017/08/MODUL_TOT_PALIATIF_KANKER_BAGI_TENAGA_KESEHATAN.pdf

There are currently three programmes of research: each focused on people affected by cancer, other life limiting illnesses, and those requiring end of life care:
https://www.southampton.ac.uk/chp/research/endoflife.page


Management of Lymphoedema in Palliative Care
Lymphoedema occurs due to the inability of the lymphatic system to maintain normal tissue homeostasis. This results in an accumulation of protein-rich fluid in the subcutaneous tissues.
Lymphoedema is one form of chronic oedema.
In patients with cancer, lymphoedema is often secondary to the underlying cancer or previous cancer treatment.

Where available, patients should be referred to specialist lymphoedema clinics
The core treatment elements are:

• • Skin care – keep skin intact, clean and well hydrated with non-perfumed emollient (e.g, Diprobase®, Doublebase® or Zerobase®)
• • Compression/support stockings
• • Movement and exercise
• • Simple lymph drainage, self-massage techniques.
• • Avoid affected limb for any medical procedure where possible, e.g injection, venepuncture, blood pressure measurement

https://leedspalliativecare.org.uk/wp-content/uploads/2019/09/A-Guide-to-Symptom-Management-in-Palliative-Care-Yorkshire-and-Humber-End-of-Life-Care-Group.pdf

The concept of “total pain” or “total suffering” indicates that there are many factors which contribute to the experience of pain and other physical symptoms and each patient must be treated with the knowledge that physical symptoms cannot be treated in isolation. Whatever symptom a patient is experiencing it is important to look at it in the context of the above diagram which describes the concept of total suffering.
http://mobcdhb.palliativecare.org.nz/Total%20Suffering.pdf

1. 1. Ensures there is a supply of drugs in the patient’s home
2. 2. Ensure they have the apparatus needed to administer them
3. 3. Ensures both are available to an attending clinician for use where appropriate
4. 4. These drugs belong to the patient, and have the same legal status as other prescribed controlled drugs.

• 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?

1. Consider spirituality as a potentiality important component of every patient's physical well being and mental health.
2. Address spirituality at each complete physical examination and continue addressing it at follow-up visits if appropriate.
3. In patient care, spirituality is an ongoing issue. Respect a patient's privacy regarding spiritual beliefs; don't impose your beliefs on others.
4. Make referrals to chaplains, spiritual directors, or community resources as appropriate.
5. 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.

Due to new treatments and technology in critical care units, more patients now survive critical illness.
However, even with this help, 15-20% of UK critical care patients die in hospital.
End-of-life care therefore remains a necessary core skill for intensive care teams.
Such care includes:
• Assessing and managing symptoms e.g. pain, nausea, anxiety, delirium,
• Enabling patients and those close to them to take part in care decisions;
• Understanding legal and ethical processes for withdrawal and withholding treatments
• Minimising distress
• Ensuring patients (and those close to them) do not feel abandoned
• Meeting beliefs and religious needs
https://web.archive.org/web/20200814162757/https://www.ficm.ac.uk/sites/default/files/ficm_care_end_of_life_patient.pdf