For death to occur with the minimum suffering possible,
For death to occur in a manner consistent with the values and desires of the patient and their family,
For death to be a “Good Death” as defined by the patient and their family
https://web.archive.org/web/20210123085222/https://www.trinityorthodox.ca/sites/default/files/Week%2B8%2BKalli%27s%2BLecture.pdf
Every year, over 40 million patients need palliative care, including 20 million at the end of life. 80% of those who need it live in low and middle-income countries, yet most palliative care is provided in high-income countries.
Only 20 countries have palliative care well-integrated into their healthcare systems.
- This is due to many factors, including:
- lack of palliative care policies at a national level,
- lack of trained personnel,
- lack of funding
- and reduced access to medication.
*(Worldwide Palliative Care Alliance)
https://www.palliativecare.my/the-vision/
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
Differentiating Grief from Depression in Serious Illness
Grief
- 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
https://www.capc.org/training/symptom-management/depression/launch/
A Guide to Symptom Management in Palliative Care
Supported by Health Education England
Version 6.1
Supported by Health Education England
Version 6.1
The Palliative and End of Life Care Toolkit provides
a collection of tools, knowledge, and current guidance for healthcare
professionals to support patients nearing the end of life to live well
until they die.
Palliative Care Administrative Forms and Templates
Berikut ini adalah alat terpilih untuk menilai rasa nyeri dan menilai dan melacak tingkat gejala (beberapa diisi oleh pasien).
https://www.spict.org.uk/using-spict/
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.
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:
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/
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
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.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
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/
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.
Under each of the sections below is a selection of measurement and evaluation tools for conducting palliative care research.
Liverpool Care Pathway for the Dying Patient
Listed below are the common symptoms that may occur in the last year of life:
- pain
- fatigue
- frustration
- difficulty breathing
- difficulty swallowing
- lack of appetite
- constipation
- hope and hopelessness
- confusion.
The most common symptoms in the last few days of life are:
- pain
- agitation
- nausea and vomiting
- breathlessness
- excessive respiratory secretions.
Several physical and emotional changes occur as death approaches, including:
- Excessive sleepiness and weakness as periods of wakefulness become shorter and overall energy declines.
- Breathing changes, such as periods of rapid breathing alternating with short episodes when breathing stops.
- Visual and hearing changes, such as seeing people or scenes that others do not (hallucinations).
- Decreased appetite as your metabolism slows and you no longer have the same interest in food.
- Urinary and bowel changes, such as dark or red urine and hard stools that are difficult to pass (constipation).
- Temperature changes, such as running a high temperature or feeling very cold.
- Emotional changes, such as becoming less interested in the outside world and being less socially involved with others.
THE ROLE OF PALLIATIVE CARE AT THE END OF LIFE
The
online Postgraduate Certificate in Palliative Care is designed to
develop your knowledge, skills and confidence to care for patients who
have life limiting illnesses and their families. The course is designed
for a variety of registered adult healthcare professionals within
primary and secondary care. It will contribute to and enhance your
abilities to lead and drive clinically-effective care with patients with
advanced disease.
In any given situation we must use
■ knowledge
know what we could do
■ skill
know what we should do
■ attitude
know how we should do
■ diplomacy
know what the patient wants us to do / not do
■ judgement
make an active/ negotiated decision
Weekly self care checklist: 90% of our clinicians use more than 5/ week! pic.twitter.com/hyAq0RfU8h
— Eduardo Bruera MD (@edubru) June 11, 2021
How can I learn more about end-of-life care?
Talk to your doctor.
National Hospice and Palliative Care Organization
www.nhpco.org
Growth House, Inc.
www.growthhouse.org
Hospice Foundation of America
www.hospicefoundation.org
Well Spouse Association
www.wellspouse.org
National Family Caregivers Association
www.nfcacares.org
National Health Information Center
www.healthfinder.gov
Children of Aging Parents
www.caps4caregivers.org
Eldercare Locator
www.eldercare.gov
Department of Pain Medicine & Palliative Care, Beth Israel Medical Center
www.stoppain.org
https://sctrweb2.musc.edu/pups/files/0000/0911/End-of-life.pdf
Okay kan, Bro!
IKA SYAMSUL HUDA MZ
