Each individual must have an individual care plan according to their needs. The plan should be discussed openly with the person and those identified as important to them. This plan must be reviewed on a daily basis.
https://www.somersetccg.nhs.uk/
THE DISCUSSION Appropriate setting
- Discussions should be held in person and not by telephone, except when face-to-face meetings are not possible for geographic reasons
- Privacy, prevent interruptions (leave your pager/mobile with someone else)
- Sitting down so the patient and relative can see your face, not standing over the patient’s bed
- Allow enough time
- The patient has at least one family member or friend for support
https://sites.google.com/view/principles-of-medical-ethics/communication-with-patients
A goals of care discussion between a patient (or his/her Substitute Decision Maker if the patient lacks capacity) and healthcare provider(s) addresses the patient’s goals for his or her care in the context of healthcare consent and decision-making in advanced illness. The purpose of these discussions is to outline the patient’s values, beliefs, wishes, perception of quality of life and what he or she characterizes as meaningful and important. Other elements include the patient’s understanding of current health conditions, prognosis, and likely course of events if his or her goals of care are applied to potential treatment decisions. The goals of care discussion provides the foundation for decision-making and will often include the development of (and obtaining informed consent to) a plan of treatment.
https://www.ontariopalliativecarenetwork.ca/
Advance care planning is:
1) A key pillar of palliative care and an integral component of the practice of medicine.
With the changing healthcare landscape, a seriously ill or frail person who might die in the next year is unlikely to see the same health care professional or health care team members in all care settings. The health care professional who primarily provides care for the patient is most likely to know the person best and have a discussion before a crisis occurs.
2) A process of planning for future medical care in the event the person lacks capacity to make medical decisions.
https://web.archive.org/web/20211105222925/https://polst.org/wp-content/uploads/2018/01/2018.01.31-POLST-Care-Continuum-Toolkit.pdf
PALLIATIVE SEDATION
“Palliative sedation” means
the intentional administration
of sedative medication
to reduce a patient’s level
of consciousness,
with the intent
to alleviate suffering
at the end of life.
It includes both
intermittent and continuous sedation,
as well as
both superficial and deep sedation.
It may be accompanied
by the withdrawal
of artificial hydration and nutrition.
(Justice Smith, Carter v. Canada (Attorney General), 2012 BCSC 886)
https://web.archive.org/web/20190305162410/http://www.eol.law.dal.ca/wp-content/uploads/2017/11/2-pall-sed-jDownie-4B.pdf
Prognostication in Palliative Care
https://pharmacopallcare.blogspot.com/2020/09/prognostication-in-palliative-care-ika.html
Palliative Care for Adults REVISION DATE: JANUARY 2020/SIXTH EDITION
A useful definition of “bad news” is information that “results in a cognitive, behavioral, or emotional deficit in the person receiving the news that persists for some time after the news is received.” (Ptacek, 1996) Another definition of bad news is “any news that drastically and negatively alters the patient’s view of her or his future.” (Buckman, 1984) Implicit in these definitions is that a terminal diagnosis is not the only form of bad news; it may also refer to disclosing the diagnosis of a serious chronic condition such as multiple sclerosis, ultrasound-verified fetal demise to a pregnant woman, and other scenarios.
https://www.icsi.org/guideline/palliative-care/
Your feelings
Support for family carers is a core function of palliative care service provision. Family meetings provide an opportunity to enhance the quality of care provided to palliative care patients and their family carers. The clinical guidelines outlined here offer a framework for preparing, conducting and evaluating family meetings.
Family meetings should not be used as an opportunity for health care professionals to debate a patient’s medical status; in this situation, a case conference should be convened prior to the family meeting.
Family meetings should not be saved for ‘crisis’ situations. Instead, a preventative approach is advocated where issues are anticipated before they become major dilemmas. Hence a proactive rather than reactive approach to care is fostered.
https://web.archive.org/
Your feelings
There
is no right or wrong way to feel when you hear bad news about your
condition. You might feel numb at first, and unable to take in the news,
or calm and matter-of-fact about dying.
As time passes, you may experience a range of emotions. It's normal to feel some or all of the following:
- shock
- fear
- anger
- resentment
- denial
- helplessness
- sadness
- frustration
- relief
- acceptance
You may also feel isolated and alone, even if you have family and friends around you.
You might not experience all of these feelings and, if you do, they will not necessarily come in any particular order. Whatever you feel, you do not have to go through it alone.
You might not experience all of these feelings and, if you do, they will not necessarily come in any particular order. Whatever you feel, you do not have to go through it alone.
https://www.nhs.uk/conditions/end-of-life-care/coping-with-a-terminal-illness/
The seven stages of grief are another popular model for explaining the many complicated experiences of loss.
These seven stages include:
https://www.healthline.com/
The seven stages of grief are another popular model for explaining the many complicated experiences of loss.
These seven stages include:
- Shock and denial. This is a state of disbelief and numbed feelings.
- Pain and guilt. You may feel that the loss is unbearable and that you’re making other people’s lives harder because of your feelings and needs.
- Anger and bargaining. You may lash out, telling God or a higher power that you’ll do anything they ask if they’ll only grant you relief from these feelings.
- Depression. This may be a period of isolation and loneliness during which you process and reflect on the loss.
- The upward turn. At this point, the stages of grief like anger and pain have died down, and you’re left in a more calm and relaxed state.
- Reconstruction and working through. You can begin to put pieces of your life back together and carry forward.
- Acceptance and hope. This is a very gradual acceptance of the new way of life and a feeling of possibility in the future.
https://www.healthline.com/
Recognising dying is the first step in terminal care management. The terminal phase may be hours or days. It is important to plan for symptoms and changing circumstances. Anticipatory prescribing can prevent crises and unplanned admission to hospital supporting home death.
The needs of families during the dying process and after death should be clarified and discussed.
The needs of families during the dying process and after death should be clarified and discussed.
https://www.caresearch.com.au/caresearch/tabid/3429/Default.aspx
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/
Changing the way we deliver services will take collaboration and careful planning from all partners.
https://www2.gnb.ca/
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/
Dame Cicely Saunders (1918 - 2005), founder
of the modern hospice movement, drew attention to the profound impact
that the experience of death has on those who witness it, with the
statement “How people die remains in the memory of those who live on”.‘Every person in the last days of their life regardless of who they are, where they are or who cares for them has the right to receive high quality care given with compassion and skill.
Every person in the last days of their life regardless of who they are, where they are or who cares for them should expect that their loved ones receive high quality support given with compassion and skill.‘
Kat Collett, Consultant in Palliative Medicine, Lincolnshire.
Five priorities of care from the LACDP document ‘One Chance to Get it Right’Principles of Prescribing in Palliative care
https://pharmacopallcare.blogspot.com/2020/09/principles-of-prescribing-in-palliative.html
- 1. The possibility that a person may die within the coming days and hours is recognized and communicated clearly, decisions about care are made in accordance with the person's needs and wishes and these are reviewed and revised regularly
- 2. Sensitive communication takes place between staff and the person who is dying and those important to them
- 3. The dying person, and those identified as important to them, are involved in decisions about treatment and care
- 4. The people important to the dying person are listened to and their needs are respected
- 5. Care is tailored to the individual and delivered with compassion—with an individual care plan in place
Care given to people who are near the end of life and have stopped treatment to cure or control their disease. End-of-life care includes physical, emotional, social, and spiritual support for patients and their families. The goal of end-of-life care is to control pain and other symptoms so the patient can be as comfortable as possible. End-of-life care may include palliative care, supportive care, and hospice care.
https://www.cancer.gov/publications/dictionaries/cancer-terms/def/end-of-life-care
Nothing can erase the pain of facing the loss of someone you love, but end of life care can help support the whole family and allow your loved one to pass on in comfort and dignity.
https://myhometouch.com/end-of-life-care
Studies show hospice care often is not started soon enough. Sometimes the doctor, patient, or family member will resist hospice because they think it means “giving up” or that there’s no hope.
https://www.cancer.org/treatment/end-of-life-care/hospice-care/what-is-hospice-care.html
Palliative care is provided in the community, in hospices and in hospitals.
It can be really difficult to talk openly to family and friends about feelings and thoughts about the future. An experienced professional can help both the patient and family and friends, by listening and advising.
https://patient.info/treatment-medication/palliative-care-leaflet
Nothing can erase the pain of facing the loss of someone you love, but end of life care can help support the whole family and allow your loved one to pass on in comfort and dignity.
https://myhometouch.com/end-of-life-care
Studies show hospice care often is not started soon enough. Sometimes the doctor, patient, or family member will resist hospice because they think it means “giving up” or that there’s no hope.
https://www.cancer.org/treatment/end-of-life-care/hospice-care/what-is-hospice-care.html
- End of life care is support for people who are in the last months or years of their life.
- End of life care should help you to live as well as possible until you die, and to die with dignity.
- The people providing your care should ask you about your wishes and preferences.
Palliative care is provided in the community, in hospices and in hospitals.
- It can be provided by all health care professionals, including GPs and district nurses – supported where necessary by specialist palliative care services.
- Hospices are the main providers of specialist palliative care services for people living in the community.
It can be really difficult to talk openly to family and friends about feelings and thoughts about the future. An experienced professional can help both the patient and family and friends, by listening and advising.
https://patient.info/treatment-medication/palliative-care-leaflet
Symptom Assessment Scale (SAS)
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
The PA Toolkit is a set of clinical, educational and management resources designed to guide and support RACFs to implement a comprehensive, evidence-based, person-centred and sustainable approach to palliative care for appropriate residents.
https://www.caresearch.com.au/caresearch/tabid/3583/Default.aspx#
End of life care describes the care and treatment delivered by health professionals, carers and other support staff to a person who is living with a life-limiting illness such as chronic or malignant disease. A person is considered to be ‘approaching the end of their life’ if they are likely to die within the next 12 months.
https://bit.ly/3bz06Hx
Quality of care can be checked, compared, and improved by assessing responses from bereaved next-of-kin.The “Care of the Dying Evaluation” (CODE™) questionnaire, validated in German in 2018 (CODE-GER), examines quality of care for the patient and support of next-of-kin. Table 2 Items per subscales, scales, and subscale scores: https://link.springer.com/article/10.1007/s00520-020-05465-2/tables/2
Steve Pantilat, MD, Palliative Care Part 1: INTRODUCTION
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
The PA Toolkit is a set of clinical, educational and management resources designed to guide and support RACFs to implement a comprehensive, evidence-based, person-centred and sustainable approach to palliative care for appropriate residents.
https://www.caresearch.com.au/caresearch/tabid/3583/Default.aspx#
https://bit.ly/3bz06Hx
Quality of care can be checked, compared, and improved by assessing responses from bereaved next-of-kin.The “Care of the Dying Evaluation” (CODE™) questionnaire, validated in German in 2018 (CODE-GER), examines quality of care for the patient and support of next-of-kin. Table 2 Items per subscales, scales, and subscale scores: https://link.springer.com/article/10.1007/s00520-020-05465-2/tables/2
Steve Pantilat, MD, Palliative Care Part 1: INTRODUCTION
Goals of palliative care remain the same whether dying or recovering:
Maintaining mouth carefor all patients with limited oral intake is essential and encouraging the family members to support regular mouth care can offer them comfort.
https://web.archive.org/web/20200913140156/https://palliativecare.bradford.nhs.uk/Documents/Professional%20guidance%20for%20using%20last%20days%20of%20life%20care%20plan%20%28community%29.pdf
Variables within palliative sedation
• intermittent and continuous
• superficial and deep
• with artificial hydration and nutrition and without
• intermittent and continuous
• superficial and deep
• with artificial hydration and nutrition and without
What to do if a patient presents gradual decline in the ability/interest to take food and fluids?
Collaborative Care Planning is a process used by interdisciplinary teams to improve quality and efficiency of care for specific patient populations.
The steps involved in Advance Care Planning:
https://web.archive.org/web/20210607091835/https://extranet.ahsnet.ca/teams/policydocuments/1/clp-advance-care-planning-hcs-38-01-procedure.pdf
a) Think about – Think about your values and wishes;
b) Learn – Learn about your own health;
c) Choose – Choose someone to make decisions and speak on your behalf;
d) Communicate – Communicate your wishes and values about healthcare; and
e) Document – Document your plan in a personal directive.
b) Learn – Learn about your own health;
c) Choose – Choose someone to make decisions and speak on your behalf;
d) Communicate – Communicate your wishes and values about healthcare; and
e) Document – Document your plan in a personal directive.
https://web.archive.org/web/20210607091835/https://extranet.ahsnet.ca/teams/policydocuments/1/clp-advance-care-planning-hcs-38-01-procedure.pdf
EVERYONE
Everyone should have the opportunity
to die well, and you can help by
understanding the changes to expect
as someone approaches end of life,
the importance of multidisciplinary
working, and practical ways to
improve comfort and dignity.
https://web.archive.org/web/20210613125812/http://www.wetrain.org.uk/wp-content/uploads/2017/09/we-train-12pp-Training-booklet-2nd-proof-Agu17-no-bleed.pdf
Everyone should have the opportunity
to die well, and you can help by
understanding the changes to expect
as someone approaches end of life,
the importance of multidisciplinary
working, and practical ways to
improve comfort and dignity.
https://web.archive.org/web/20210613125812/http://www.wetrain.org.uk/wp-content/uploads/2017/09/we-train-12pp-Training-booklet-2nd-proof-Agu17-no-bleed.pdf
Okay kan, Bro!
IKA SYAMSUL HUDA MZ
