And recent studies, including one published in the New England Journal of Medicine, have shown that patients with a serious illness who received palliative care lived longer than those who did not receive this care.
https://getpalliativecare.org/whatis/
Core domains of primary palliative care
(e.g., symptom assessment and management, psychosocial support, advance care planning)
may be seamlessly integrated within usual heart failure (HF) disease and device management.
When appropriate, specialty palliative care services may be initiated to address complex or intractable palliative needs.
The timing of these referrals should be based on patient need, not prognosis,
and can be initiated at any point during the HF trajectory.
Given that symptoms, functional status,
and quality of life are not perfectly correlated,
it is important that palliative needs such as symptoms
and quality of life be routinely
and systematically monitored throughout the patient’s HF care trajectory.
https://pubmed.ncbi.nlm.nih.gov/28982506/
What can be done?
The team will work with you to relieve symptoms and provide comfort.
Things you can do:
- Allow the person to sleep as much as he or she wishes
- Include the children in your family in a way that is sensitive to their age and willingness to be involved
- Reposition the person if it makes him or her more comfortable
- Moisten the person’s mouth with a damp cloth
- If the person has a fever or is hot, apply a cool cloth to the forehead
- Give medications as ordered to decrease symptoms such as anxiety, restlessness, agitation or moist breathing
- Write down what the person says, reading it later may comfort you
- Continue to talk to the person and say the things you need or want to say. Remember that the person may be able to hear, even when not able to respond
- Keep a light on in the room, it may be comforting
- Play the person’s favorite music softly
- Encourage visitors to identify themselves when talking to the person
- Keep things calm in the environment
- Open a window or use a fan in the room if the person is having trouble breathing
- Continue to touch and stay close to your loved one
Patients have a right to an honest and full explanation of their situation
https://sites.google.com/view/principles-of-medical-ethics/home?authuser=0
Independent report Review of Liverpool Care Pathway for dying patients Report on the use and experience of the Liverpool Care Pathway (LCP).
https://www.gov.uk/government/publications/review-of-liverpool-care-pathway-for-dying-patients
Independent
report Liverpool Care Pathway review: response to recommendations One
Chance to Get it Right: how health and care organisations should care
for people in the last days of their life.
https://www.gov.uk/government/publications/liverpool-care-pathway-review-response-to-recommendations
PALLIATIVE FAMILY MEETING
Planning for the end of life can be difficult. But by deciding what end-of-life care best suits your needs when you are healthy, you can help those close to you make the right choices when the time comes.
https://medlineplus.gov/endoflifeissues.html
Five Priorities of Care the Dying Person
https://www.nursingtimes.net/clinical-archive/end-of-life-and-palliative-care/personalised-care-plans-in-the-last-days-of-life-05-09-2016/
- Recognise The possibility that a person may die within the coming days and hours is recognised and communicated clearly, decisions about care are made in accordance with the person’s needs and wishes, and these are reviewed and revised regularly
- Communicate Sensitive communication takes place between staff and the person who is dying and those important to them
- Involve The dying person, and those identified as important to them, are involved in decisions about treatment and care
- Support The people important to the dying person are listened to and their needs are respected
- Plan and do Care is tailored to the individual and delivered with compassion – with an individual care plan in place
https://www.nursingtimes.net/clinical-archive/end-of-life-and-palliative-care/personalised-care-plans-in-the-last-days-of-life-05-09-2016/
This
guideline is an aid to clinical decision making and good practice in
care for patients who are deteriorating and expected to die imminently.
While this guideline focuses on physical symptoms, psychosocial and
spiritual issues also need to be addressed to give holistic care.
https://www.palliativecareguidelines.scot.nhs.uk/guidelines/end-of-life-care/Care-in-the-Last-Days-of-Life.aspx
In 2019, a group of more than 25 general practitioners (GPs) and researchers from throughout Europe, all members of the EAPC Primary Care Reference Group, produced the EAPC Toolkit for integrating palliative care into primary care at national and clinical level.
https://eapcnet.wordpress.com/2020/05/01/covid-19-and-palliative-care-scale-up-provision-in-every-country-especially-in-primary-care/
Alternatives to Regular Medication Normally Given via a Syringe Pump When this is Not Available
Alternatives to syringe pumps - non injectable
ELDAC aims to connect people working in aged care with palliative care and advance care planning information, resources and services. Toolkits are an important way of supporting these connections.
https://www.eldac.com.au/tabid/4889/Default.aspx
ETHICAL ISSUES IN PALLIATIVE CARE
Four key ethical principles:
Ethics
Moral principles that govern a person's behavior or the conducting of an activity.
https://www.lexico.com/en/definition/ethics
There are four main principles of medical ethics
Beneficence — is to produce benefit, to do good, to always act in the best interests of the patient
https://sites.google.com/view/principles-of-medical-ethics/home?authuser=0
Non-maleficence — is to minimise or do no harm
https://sites.google.com/view/principles-of-medical-ethics/home?authuser=0
Autonomy — acknowledges patients’ rights to self-determination, without prejudice
https://sites.google.com/view/principles-of-medical-ethics/home?authuser=0
Justice — refers to the equitable allocation of health care resources according to need
https://sites.google.com/view/principles-of-medical-ethics/home?authuser=0
TALQIN dan MEMBACA DOA UNTUK PASIEN YANG SEKARAT
Hadits Ummu Salamah radhiyallahu ‘anha bahwasanya Rasulullah shallallahu ‘alaihi wa sallam bersabda:
إذا حضرتم المريض أو الميت، فقولوا خيرا، فإن الملائكة يؤمنون على ما تقولون
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
Palliative and End of Life Care Toolkit
https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/palliative-and-end-of-life-care-toolkit.aspx
Here are some of the key points underscored as we learned from palliative and end-of-life experts:
https://web.archive.org/web/20210123061817/http://www.thinkresearch.com/ca/wp-content/uploads/sites/6/2018/04/TRC_ThoughtPaper_EOL_2018.pdf
ADVANCE CARE PLANNING is an umbrella term that covers many aspects of future care planning. Having an advance care plan is a bit like planning ahead for a rainy day.
Continuous palliative sedation therapy (CPST)
is the use of ongoing sedation continued until the patient’s death.
There remains concern over the misuse or abuse
of sedation in general and continuous palliative sedation therapy
in particular.
Typically, continuous palliative sedation therapy
is intended for the last days or weeks of life.
Palliative sedation is distinct from sedation
caused as an unintended side-effect of medications
that are given to relieve other symptoms
(e.g. opioids administered for analgesia).
Palliative sedation is also distinct from sedation
given to relieve anxiety or agitation,
when the intended effect is to make the patient
calm and relaxed (but not necessarily unconscious).
https://www.ontariopalliativecarenetwork.ca/sites/opcn/files/KEY_PALLIATIVE_CARE_CONCEPTS_AND_TERMS.pdf
Ookay kan, Bro!
In 2019, a group of more than 25 general practitioners (GPs) and researchers from throughout Europe, all members of the EAPC Primary Care Reference Group, produced the EAPC Toolkit for integrating palliative care into primary care at national and clinical level.
https://eapcnet.wordpress.com/2020/05/01/covid-19-and-palliative-care-scale-up-provision-in-every-country-especially-in-primary-care/
INSTRUCTION AND INFORMATION ABOUT PPS V2
We
would like to highlight a number of resources which we recommend will
help in the development of palliative care research, teaching and
delivery in the community. These include resources on how to identify,
assess and to plan care.
Pain and Symptom Management
Alternatives to Regular Medication Normally Given via a Syringe Pump When this is Not Available
Alternatives to syringe pumps - non injectable
- In the event that syringe pumps are not available, consider if any of the following options would be appropriate for your patient when they are unable to swallow.
- Some drugs can be used for more than one indication; try to minimise polypharmacy where possible.
- If the patient has an eGFR <30ml/min morphine should be used with caution due to risk of toxicity. Oxycodone may be a reasonable alternative.
- Some medicines are available as buccal preparations – moistening a dry mouth helps absorption. Some injectable preparations can be administered by the buccal or sublingual route.
- Drugs given by the sublingual or buccal route can also be dispersed in water and administered down an NG tube where this is in place.
ELDAC aims to connect people working in aged care with palliative care and advance care planning information, resources and services. Toolkits are an important way of supporting these connections.
ETHICAL ISSUES IN PALLIATIVE CARE- Clinical integrity – care of the whole person
- Respect for persons – the patient is the best person to make decisions about their care, in keeping with their values and beliefs
- Justice – taking into account the needs of all concerned in the care of the patient, including family, carers and others
- Benefit to the person – recognising the patient’s changing needs as the illness progresses and ensuring that treatment achieves benefit for the patient.
Ethics
Moral principles that govern a person's behavior or the conducting of an activity.
https://www.lexico.com/en/definition/ethics
There are four main principles of medical ethics
https://sites.google.com/view/principles-of-medical-ethics/home?authuser=0
- Beneficence
- Non-maleficence
- Autonomy
- Justice
Beneficence — is to produce benefit, to do good, to always act in the best interests of the patient
https://sites.google.com/view/principles-of-medical-ethics/home?authuser=0
Non-maleficence — is to minimise or do no harm
https://sites.google.com/view/principles-of-medical-ethics/home?authuser=0
Autonomy — acknowledges patients’ rights to self-determination, without prejudice
https://sites.google.com/view/principles-of-medical-ethics/home?authuser=0
Justice — refers to the equitable allocation of health care resources according to need
https://sites.google.com/view/principles-of-medical-ethics/home?authuser=0
If
you wonder what to say to your loved one, palliative care physician Ira
Byock in his book, The Four Things That Matter Most, identifies the
things dying people most want to hear from family and friends: “Please forgive me.” “I forgive you.” “Thank you.” “I love you.”
https://www.helpguide.org/articles/end-of-life/late-stage-and-end-of-life-care.htmTalqin: The recitation of the shahada and other creedal information or instructions to someone who is about to die, or who has recently died and been buried.https://en.wiktionary.org/wiki/talqin
Jika ia mati dalam keadaan bertauhid dan dalam keadaan beriman, maka itulah yang bermanfaat baginya.
https://muslim.or.id/
TALQIN dan MEMBACA DOA UNTUK PASIEN YANG SEKARAT
Mentalqin adalah menuntun seseorang yang akan meninggal dunia untuk mengucapkan kalimat syahadat Laa Ilaaha Illa Allah.
https://muslim.or.id/24706-fikih-jenazah-1-mentalqin-orang-yang-akan-meninggal.htmlHadits Ummu Salamah radhiyallahu ‘anha bahwasanya Rasulullah shallallahu ‘alaihi wa sallam bersabda:
إذا حضرتم المريض أو الميت، فقولوا خيرا، فإن الملائكة يؤمنون على ما تقولون
“Jika
kalian menghadiri orang sakit atau akan meninggal dunia maka hendaklah
mengatakan kebaikan. Sebab sesungguhnya malaikat akan mengaminkan apa
yang kalian katakan” .
https://muslim.or.id/24880-fikih-jenazah-2-mendoakan-kebaikan-pada-orang-yang-akan-meninggal.html
ReSPECT stands for Recommended Summary Plan for Emergency Care and Treatment. The ReSPECT process
creates a summary of personalised recommendations for a person’s
clinical care in a future emergency in which they do not have capacity
to make or express choices. Such emergencies may include death or
cardiac arrest, but are not limited to those events. The process is
intended to respect both patient preferences and clinical judgement. The
agreed realistic clinical recommendations that are recorded include a
recommendation on whether or not CPR should be attempted if the person’s
heart and breathing stop.
https://www.resus.org.uk/respect/health-and-care-professionals/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 Association of Paediatric Palliative Medicine Master Formulary 5th edition 2020
https://www.appm.org.uk/
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
Oral thrush management
Regular essential mouth care management reduces the chance of infection and should be continued
NB: All medications must be prescribed
- Use a new toothbrush
- Drug treatment (requires medical review) will improve symptoms,
- Note Nystatin and chlorhexidine mouthwash should not be used at the same time, as they will inactivate each other. Use 1 hour apart.
- For patients with dentures ensure dentures are thoroughly cleaned and soaked in appropriate antiseptic (e.g. chlorhexidine) for 15 minutes then rinsed in water.
- Dispose of toothbrush following completion of drug treatment.
https://diigo.com/0huhi9
☛ Advance Care Planning (ACP); establish patient’s goals of care
☛ Ensure your patient is aware of these goals
☛ Identity substitute decision maker (early in care)
☛ Educate decision makers/caregivers so they can make informed decisions on behalf of their loved one
☛ Understand what DNR (Do Not Resuscitate) means and how to get proper consent from your patient
☛ Ask open-ended questions
☛ Use the Symptom Management Tool to detect early signs
☛ Utilize the support of PSW’s (Personal Support Worker)
☛ Ensure your patient is aware of these goals
☛ Identity substitute decision maker (early in care)
☛ Educate decision makers/caregivers so they can make informed decisions on behalf of their loved one
☛ Understand what DNR (Do Not Resuscitate) means and how to get proper consent from your patient
☛ Ask open-ended questions
☛ Use the Symptom Management Tool to detect early signs
☛ Utilize the support of PSW’s (Personal Support Worker)
https://web.archive.org/web/20210123061817/http://www.thinkresearch.com/ca/wp-content/uploads/sites/6/2018/04/TRC_ThoughtPaper_EOL_2018.pdf
https://palliativecare.bradford.nhs.uk/Documents/ACP_resource_pack.pdf
Substitute Decision Maker (SDM)
Who is the patient’s SDM(s)?
☛ In Ontario,every patient automatically has SDM(s).
☛ SDM(s) are the person or persons who will make treatment and personal care decisions if the patient loses the capacity to make these decisions in the future.
☛ The hierarchy in the Health Care Consent Act out lines the ranking of SDMs (see figure below).
☛ A patient’s automatic SDM(s) is the highest ranking family member(s).
Substitute Decision Maker (SDM)
Who is the patient’s SDM(s)?
☛ In Ontario,every patient automatically has SDM(s).
☛ SDM(s) are the person or persons who will make treatment and personal care decisions if the patient loses the capacity to make these decisions in the future.
☛ The hierarchy in the Health Care Consent Act out lines the ranking of SDMs (see figure below).
☛ A patient’s automatic SDM(s) is the highest ranking family member(s).
PALLIATIVE SEDATION
Based on the Canadian Consensus Framework,
palliative sedation is defined as:
Based on the Canadian Consensus Framework,
palliative sedation is defined as:
1) the use of (a) pharmacological agent(s) to reduce consciousness;
2) reserved for treatment of intolerable and refractory physical symptoms (rarely for existential distress); and
2) reserved for treatment of intolerable and refractory physical symptoms (rarely for existential distress); and
3) only considered in a patient who has been diagnosed
with an advanced progressive illness.
with an advanced progressive illness.
Continuous palliative sedation therapy (CPST)
is the use of ongoing sedation continued until the patient’s death.
There remains concern over the misuse or abuse
of sedation in general and continuous palliative sedation therapy
in particular.
Typically, continuous palliative sedation therapy
is intended for the last days or weeks of life.
Palliative sedation is distinct from sedation
caused as an unintended side-effect of medications
that are given to relieve other symptoms
(e.g. opioids administered for analgesia).
Palliative sedation is also distinct from sedation
given to relieve anxiety or agitation,
when the intended effect is to make the patient
calm and relaxed (but not necessarily unconscious).
https://www.ontariopalliativecarenetwork.ca/sites/opcn/files/KEY_PALLIATIVE_CARE_CONCEPTS_AND_TERMS.pdf
Ookay kan, Bro!
IKA SYAMSUL HUDA MZ
