THE NORTH WEST END OF LIFE CARE MODEL
Supporting the people of the North West to live well before dying with peace and dignity in the place of their choice
https://www.wchc.nhs.uk/services/specialist-palliative-care/end-of-life-care-team/
https://web.archive.org/web/20210516090500/https://www.nwcscnsenate.nhs.uk/files/2414/3280/1623/May_2015_Final_NW_eolc_model_and_good_practice_guide.pdf?PDFPATHWAY=PDF
Signs and symptoms
that suggest a person
may be in the last days
of life include:
• signs such as agitation,
Cheyne–Stokes breathing,
deterioration in level
of consciousness,
mottled skin,
noisy respiratory secretions
and progressive weight loss.
• symptoms such as
increasing fatigue,
reduced desire
for food and fluid,
and deterioration
in swallowing function.
• functional observations
such as changes in communication,
deteriorating mobility
or performance status,
or social withdrawal.
https://www.nice.org.uk/guidance/qs144/resources/care-of-dying-adults-in-the-last-days-of-life-pdf-75545479508677
that suggest a person
may be in the last days
of life include:
• signs such as agitation,
Cheyne–Stokes breathing,
deterioration in level
of consciousness,
mottled skin,
noisy respiratory secretions
and progressive weight loss.
• symptoms such as
increasing fatigue,
reduced desire
for food and fluid,
and deterioration
in swallowing function.
• functional observations
such as changes in communication,
deteriorating mobility
or performance status,
or social withdrawal.
https://www.nice.org.uk/guidance/qs144/resources/care-of-dying-adults-in-the-last-days-of-life-pdf-75545479508677
https://www.nice.org.uk/guidance/qs144
Palliative care identification tools
https://livingwellincommunities.com/2018/04/11/comparing-tools-that-can-help-to-identify-people-who-could-benefit-from-a-palliative-care-approach/
Palliative Performance Scale (PPSv2)
https://palliativecareindonesia.blogspot.com/p/blog-page.html
Symptom Management Guidelines
https://bc-cpc.ca/cpc/publications/symptom-management-guidelines/
Palliative care identification tools
https://livingwellincommunities.com/2018/04/11/comparing-tools-that-can-help-to-identify-people-who-could-benefit-from-a-palliative-care-approach/
Palliative Performance Scale (PPSv2)
https://palliativecareindonesia.blogspot.com/p/blog-page.html
Symptom Management Guidelines
https://bc-cpc.ca/cpc/publications/symptom-management-guidelines/
Palliative Care
is the active holistic care of individuals across all ages with serious
health-related suffering due to severe illness, and especially of those
near the end of life. It aims to improve the quality of life of
patients, their families & their caregivers.
Although palliative care
is applicable and valuable throughout
the disease trajectory,
some of the most challenging
discussions in palliative care
are regarding end-of-life issues.
This can include talking
about prognosis,
preferences and priorities
(eg, life-prolonging
and/or palliative treatments,
place of care, place of death),
as well as hopes and fears
regarding dying
and death—a process
often formally referred
to as anticipatory or
advance care planning (ACP).
Uncertainty regarding
disease trajectory and prognosis
has frequently been cited by clinicians
as a cause for avoiding
end-of-life care discussions,
particularly
for non-malignant life-threatening illnesses.
As a result,
these patient groups are significantly
less likely to experience ACP discussions.
https://web.archive.org/web/20210122121030/https://pmj.bmj.com/content/postgradmedj/92/1090/466.full.pdf
is applicable and valuable throughout
the disease trajectory,
some of the most challenging
discussions in palliative care
are regarding end-of-life issues.
This can include talking
about prognosis,
preferences and priorities
(eg, life-prolonging
and/or palliative treatments,
place of care, place of death),
as well as hopes and fears
regarding dying
and death—a process
often formally referred
to as anticipatory or
advance care planning (ACP).
Uncertainty regarding
disease trajectory and prognosis
has frequently been cited by clinicians
as a cause for avoiding
end-of-life care discussions,
particularly
for non-malignant life-threatening illnesses.
As a result,
these patient groups are significantly
less likely to experience ACP discussions.
https://web.archive.org/web/20210122121030/https://pmj.bmj.com/content/postgradmedj/92/1090/466.full.pdf
Anticipatory prescribing for the most frequently occurring symptoms in the deteriorating and/or end-of-life phases:
- Prevents crises and unplanned admissions to hospitals; and
- Supports dying at home for those patients and their caregivers where this is their choice
EARLY IDENTIFICATION and PROGNOSTIC
Review of Liverpool Care Pathway for dying patients
Growth House, Inc.,
gives you free access to over 4,000 pages of high-quality education
materials about end-of-life care, palliative medicine, and hospice care,
including the full text of several books.
Ian Anderson Continuing Education Program in End-of Life Care University of Toronto
PROFESSIONAL PALLIATIVE HUB
Framework on Palliative Care in Canada
PRINCIPLES OF PALLIATIVE CARE
Palliative and End-of-Life Care in Stroke A Statement for Healthcare Professionals From the American Heart Association/American Stroke Association
https://www.ahajournals.org/doi/full/10.1161/str.0000000000000015
https://www.ahajournals.org/doi/full/10.1161/str.0000000000000015
So
in the end, we have some data to suggest that IV hydration of 1 liter
is unlikely to provide a meaningful benefit to most hospice patients
with advanced cancer with mild to moderate dehydration (but not severe).
"A Performance Status provides a standardized way to create a broad, general picture of a patient's health. They have many uses in prognostication as well as treatment decisions and research."
https://diigo.com/0huek6
SYMPTOM MANAGEMENT POCKET GUIDES
Palliative radiotherapy
BMJ 2018; 360
doi: https://doi.org/10.1136/bmj.k821
(Published 23 March 2018) Cite this as: BMJ 2018;360:k821
https://www.bmj.com/content/360/bmj.k821
Clinical Tools & Standards
PALLIATIVE AND END OF LIFE CARE TOOLKIT
- https://acclaimhealth.ca/programs/palliative-care-consultation/palliative-care-resources/
- https://www.palliativecareguidelines.scot.nhs.uk/guidelines.aspx
- https://www.ontariopalliativecarenetwork.ca/en/node/31896
- http://www.mhpcn.net/palliative-care-toolbox
- https://library.nshealth.ca/PalliativeCare
- https://www.rcgp.org.uk/endoflifecare
- https://palliativecareindonesia.blogspot.com/
- Excessive respiratory secretions can cause loud rattles in the airways and throat.
- Dying patients may be unable to cough effectively or swallow which can lead to retained secretions in the upper respiratory tract.
- Treatment options include repositioning, suction and the administration of anticholinergic drugs.
- when giving medicine for noisy respiratory secretions: monitor for improvements, preferably every 4 hours, but at least every 12 hours monitor regularly for side effects, particularly delirium, agitation or excessive sedation when using atropine or hyoscine hydrobromide treat side effects, such as dry mouth, delirium or sedation
- Noisy chest secretions can be distressing for those close to the person.
- It might be helpful to explain to patients and those important to them that noisy breathing is common at the end of life, so it will be less alarming if it happens.
- You may find it helpful to share our information for family and friends about Changes in breathing towards the end of life.
- You can help the person by positioning them in a way that encourages the excess fluid to drain away.
- End-stage secretions (commonly referred to as “death rattle”) is known to occur in between 12 and 92 percent of patients, with the median time from onset of death rattle until death between 11 and 28 hours.
- As most patients are no longer alert at the time of the secretions, most physicians and nurses believe that they are usually not distressed by them.
- Consider discussing the issue with family members so they understand that an unresponsive patient is not aware of the secretions.
- Two of the most common medications used to treat secretions are both antimuscarinic anticholinergic agents: scopolamine and glycopyrrolate.
- Pulmonary oedema also causes increased respiratory secretions.
- There is currently no evidence to show that medications for treating respiratory secretions at the end-of-life are more effective than placebo, although the evidence base is extremely small.
- In the absence of evidence to guide recommendations there is some uncertainty as to the need to treat secretions.
- However, it is recognised that noisy breathing can be distressing to carers and family and therefore it may be necessary to initiate treatment based on individual needs.
https://www.rcgp.org.uk/clinical-and-research/resources/a-to-z-clinical-resources/daffodil-standards/quality-improvement-criteria-guidance.aspx
The Daffodil Standards: Self Assessment Evidence and Guidance
https://www.rcgp.org.uk/clinical-and-research/resources/a-to-z-clinical-resources/daffodil-standards/the-daffodil-standards.aspx
The eight Daffodil Standards are:
- Professional and competent staff
- Early identification of patients and carers
- Carer support – before and after death
- Seamless, planned, co-ordinated care
- Assessment of unique needs of the patient
- Quality care during the last days of life
- Care after death
- General practices being hubs within compassionate communities
Patients with neuropathic pain may benefit from a trial of a tricyclic antidepressant. An antiepileptic may be added or substituted if pain persists; gabapentin and pregabalin are licensed for neuropathic pain. Ketamine is sometimes used under specialist supervision for neuropathic pain that responds poorly to opioid analgesics. Pain due to nerve compression may be reduced by a corticosteroid such as dexamethasone, which reduces oedema around the tumour, thus reducing compression. Nerve blocks or regional anaesthesia techniques (including the use of epidural and intrathecal catheters) can be considered when pain is localised to a specific area.
https://bnf.nice.org.uk/guidance/prescribing-in-palliative-care.html
The NIH Stroke Scale has many caveats buried within it. If your patient has prior known neurologic deficits e.g. prior weakness, hemi- or quadriplegia, blindness, etc. or is intubated, has a language barrier, etc., it becomes especially complicated.
Rules:
Score what you see, not what you think.
Score the first response, not the best response (except Item 9 - Best Language).
Don’t coach.
https://www.mdcalc.com/nih-stroke-scale-score-nihss
Education and training in palliative care
https://www2.health.vic.gov.au/hospitals-and-health-services/patient-care/end-of-life-care/palliative-care/palliative-care-education-training
End of life definition:“Patients are ‘approaching the end of life’ when they are likely to die within the next 12 months. This includes those patients whose death is expected within hours or days; those who have advanced, progressive incurable conditions; those with general frailty and co-existing conditions that mean they are expected to die within 12 months; those at risk of dying from a sudden acute crisis in an existing condition; and those with life-threatening acute conditions caused by sudden catastrophic events.” (GMC)
What are the goals of palliative care?
The goals are:
- Relieve pain and other symptoms
- Address your emotional and spiritual concerns, and those of your caregivers
- Coordinate your care
- Improve your quality of life during your illness
Continuous subcutaneous infusion (CSI, CSCI) and intermittent subcutaneous injection
facilitates the administration of pain and symptom control drugs and
have been used for many years in the hospice and palliative care
settings. The intravenous (IV) route is typically the standard of care
when the parenteral route is required, however, this route can be
burdensome to patients and families, and the ability to establish and
maintain IV access in certain care environments, especially in the home,
may be difficult, if not impossible. Therefore,
subcutaneous and other non-oral routes of administration should be
considered more often in hospice. Other common alternatives to
administer medications include topical, transdermal, rectal and
transmucosal routes.
https://enclarapharmacia.com/palliative-pearl/subcutaneous-administration-of-ondansetron/Dexamethasone is the corticosteroid of choice.
Spinal cord compression or cauda equina syndrome
- dexamethasone 16mg per day
- dexamethasone 16mg per day
- dexamethasone 8mg per day
- dexamethasone 6-16 mg per day
- dexamethasone 2-8 mg per day, up to 12mg per day
- dexamethasone 4-8 mg per day
- dexamethasone 4-8 mg per day
- dexamethasone 2-4mg / day, prednisolone 15-40mg/day
*a progestogen may be more appropriate as an agent to treat anorexia for long term use, for example:Rectal discharge
megesterol acetate 80-160mg od po in the morning or medroxyprogesterone acetate 400mg od to bd po in the morning
rectal steroid preparations, eg hydrocortisone or prednisolone foam enema, or prednisolone suppositories. Once at night.
Parenteral dexamethasone:
given sc or iv, dose depends on indicationhttps://gpnotebook.com/
precipitates easily so usually best to give in separate syringe
PALLIATIVE CARE PLAN
Your palliative care plan is designed to fit your life and needs. It may include elements such as:
Symptom management.
Your palliative care plan will include steps to address your symptoms and improve your comfort and well-being. The care team will answer questions you may have, such as whether your pain medicines will affect treatments you’re receiving from your primary care doctor.
Support and advice.
Palliative care services include support for the many difficult situations and decisions you and your family make when you’re facing a serious illness or approaching the end of life.
You and your family may talk with a palliative care social worker, chaplain or other team member about stress, spiritual questions, financial concerns or how your family will cope if a loved one dies. The palliative care specialists may offer guidance or connect you with community resources.
Care techniques that improve your comfort and sense of well-being.
These may include breathing techniques, healing touch, visualization or simply listening to music with headphones.
Referrals.
Your palliative care clinician may refer you to other doctors: for example, specialists in psychiatry, pain medicine or integrative medicine.
Advance care planning.
A palliative care team member can talk with you about goals and wishes for your care. This information could then be used to help you develop a living will, advance directive and a health care power of attorney.
Your palliative care team collaborates with your regular doctors to ensure your care is well-coordinated.
End-stage renal disease (ESRD) refers to stage 5 chronic kidney disease. Because of heavy symptom burdens and shortened life expectancies, this patient group is specifically in need of palliative care, which aims at improving the quality of life of patients suffering from a life‐limiting condition and their families. Palliative care can overlap with curative treatments, but will focus more on the palliation of symptoms as the illness progresses.
The most common symptoms during the last days of life are:
- Pain
- Nausea
- Agitation / restlessness
- Noisy breathing (death rattle)
- Breathlessness
http://www.epaccs.com/wp-content/uploads/2015/04/Symptom-Control-Guidelines.pdf
Ookay kan, Bro!
IKA SYAMSUL HUDA MZ
