This presentation is a resource developed as
part of a face to face education event or
workshop.
The target audience is health and social care
professionals in roles providing palliative and
end of life care
The author has agreed to share the work to enable best practice
in the provision of end of life care but please acknowledge author
if you do share.
Recognising dying : 7/10/20Hosted by: Kerry Macnish Head of Education & supported by Catherine Hughes Education Facilitator
Rainbow in your Workplace
Recognising dying
You will be muted throughout.
Meanwhile, while you are waiting….
think about/write down what you understand to be a “good” death and any barriers you know to recognizing
dying
Agreements
• Look after your own wellbeing
• Contribute to session where you can
• Maintain confidentiality
• Anonymise details to share the learning
• Evaluate the learning so we can continue to improve our offer of further education
Learning aims:-
• To demonstrate the imperative for recognising dying to enable better endings or outcomes for a persons “good death” and beyond.
• To share expectations about our responsibility in recognising dying
• Give time for questions and answers by using the chat function
About 1% (half a million) of the UK population dies every year, and 30% of hospital patients and 80% of care home residents are in their last year of life.
Earlier recognition of decline leads to earlier anticipation of likely needs, better planning, fewer crisis hospital admissions and, more
importantly, care tailored to peoples’ wishes.
Gold Standards Framework 2017 http://www.goldstandardsframework.org.uk/
http://www.goldstandardsframework.org.uk/
“Timely identification and honesty where there is uncertainty is key to the quality of care – all else follows.”
National Palliative and End of Life Care Partnership
Describe how to recognise that dying may be imminent, assess reversibility, make appropriate decisions and plans for review, and communicate uncertainty
One Chance to get it right 2014 LACDP
Recognising dying- expectations
https://www.gov.uk/government/publications/liverpool-care-pathway-review-response-to-recommendations
Assessing the person whose condition has changed, including
• how to gather information from that person and those important to them, and other health and care team members and
• make professional judgements about the potential reversibility of the condition (and if so, whether or not reversing the condition is the right thing to do) and
• take appropriate action, including seeking senior advice or second opinion if necessary.
Recognising dying- expectations
Patterns?
DISEASE(S)
RELENTLESS
Progression is
less reversible.
Treatment
benefits are
waning
CHANGE
UNDERWAY
Benefit of
treatment is
less evident
Harms of
treatment
less
tolerable
RECOVERY
LESS
LIKELY
The risk of
death is
rising
DYING
BEGINS
Deterioration
is
weekly/daily
ACTIVELY
DYING
The body is
shutting down
The person is
letting go
THE END OF LIFE THE DYING PHASE
MONTHS2-9 months
At risk of dying in 6-12 months but may live for
years
SHORT WEEKS1-8 weeks
LAST DAYS2-14 days
LAST HOURS0-48 hours
Integrated end of life care approaches
More care, Less pathway A Review of LCP 2013
Trajectories of Decline at End of Life
* Adapted from: Murray SA, Sheikh A. BMJ 2008; 336: 958-959
End stage renal failure
• Anticipated dying - end stage cancer
• Unexpected dying - pneumonia
• Uncertain dying - frailty and old age
• Unpredicted - myocardial infarction
Care home deaths- 4 observed end of life patterns
Living in uncertain times: Trajectories to death in residential care homesStephen Barclay, Katherine Froggatt, et al. British Journal of General Practice, September 2014
“Timely identification and honesty where there is uncertainty is key to the quality of care – all else follows.”
National Palliative and End of Life Care Partnership
A Systematic review of predications of
survival in palliative care: How accurate
are clinicians and who are the experts?
2016
Use the link to view or download the studyhttps://bit.ly/2E3kJkH
https://www.mariecurie.org.uk/media/press-releases/clinicians-intuitions-about-when-terminally-ill-patients-will-die-are-often-inaccurate/161472
Barriers to recognising dying?
Many clinicians feel they don’t have the confidence to have these conversations, and there aren’t enough palliative care specialists to have them.
Main barriers:
• Prognostic uncertainty, fear of impact on patients, never an optimal time, feel inadequately trained
• Not being sure what can be offered
Brighton LJ et al. Communication in palliative care: talking about
the end of life, before the end of life BMJ 2016;92:466-470
Download:
https://www.rcplondon.ac.uk/
projects/outputs/talking-
about-dying-how-begin-
honest-conversations-about-
what-lies-ahead
https://www.rcplondon.ac.uk/projects/outputs/talking-about-dying-how-begin-honest-conversations-about-what-lies-aheadhttps://www.rcplondon.ac.uk/projects/outputs/talking-about-dying-how-begin-honest-conversations-about-what-lies-ahead
“Timely identification and honesty where there is uncertainty is key to the quality of care – all else follows.”
National Palliative and End of Life Care Partnership
Tools
• Performance status/score (WHO, Karnofsky)• Lab tests• Clinical indicators/local guidance• Scales/clinical bundles/tools (e.g. SPICT, PIG
and others all developed for EOL)• The Surprise question (https://bit.ly/3h58LV1)• Intuition/experience
Proactive Identification Guidance (PIG)
Produced by the Gold Standards Framework. Download from:
https://goldstandardsframework.org.uk/PIG
http://www.goldstandardsframework.org.uk/PIGhttps://goldstandardsframework.org.uk/PIG
Supportive and Palliative Care Indicators Tool (SPICT)
One-page poster to help identify people with advanced conditions who are at risk of deterioration and dying
• General indicators, & specific questions for cancer, organ failure, frailty & dementia. Does not use ‘surprise question’. • Offers advice on communication and recording care plans • Case by case assessment – although electronic screening in development • SPICT4ALL – designed for patients and carers with less ‘medical’ language • 50% of patients identified are alive after one year4 • Developed in Scotland, now used internationally
https://www.spict.org.uk/the-spict/
Doctors and nurses must acknowledge, accept and
communicate uncertainty that exists about the prognosis
Priorities for Care for the Dying Person: Duties and Responsibilities of Health and Care Staff LACDP June 2014
Reversible symptoms?
• Dehydration
• Infection
• Blood sugar changes
• Hypotension
• Hypovolemia
• Medication changes/interactions
• Changes in consciousness
reversible• Was this change expected/anticipated by you and the
team/those who love /know them- think, is this a natural death?
• Might there be some treatment that can help…are they appropriate? What might the dying person want? (e.g. a valid Advance Decision/living will/upheaval/possible death outside home?)
• Best decisions are made in teams, if you are not sure its important to raise concerns so talk with colleagues and review with a senior clinician to review goals for care
• Acknowledge, accept and communicate uncertainty in prognostication- clear intentions may not be the same as lived outcomes.
Recognising dying- Reversible causes
Recognising Dying- group activity
You are about to be allocated in smaller groups in breakout rooms. Spend the next 5 minutes sharing your knowledge and understanding of how you recognise dying in your practiceYour session will timeout quickly! And you will return to the large group.
Write down as many signs that you notice when someone is close to death- think about what you see, hear, smell, see, know
Recognising dying- 5 mins challenge!
In the weeks before death?
• Progressively weaker, increasing fatigue and sleep, swallowing weaker and more difficult
• Reduced mobility- confined to bed for longer periods
• Changes to appetite/less interested in food leading to weight loss and dehydration
• Increased infections
• Communicating less and withdrawing socially
• Cognitive changes e.g confusion
In the days and hours before death?
• Deterioration in levels of consciousness leading to coma
• Restlessness, agitation and delirium (>80% in final days)• Skin & mucous membrane colour and temperature
changes e.g. in extremities• Absent oral intake = reduction in urine output,
incontinence• Breathing changes- e.g. noisy rattling due to increased
secretions, shallow, rapid, irregular patterns (CheyneStokes) or gaps (apneoic)
• Some report a smell, fetid/necrotic/stale
Dying in acute setting/Covid deaths
• Often related to respiratory, cardiac and renal deterioration, in context of receiving immediate care and increasingly intensive monitoring/intervention
• May have high flow oxygen, NIV or full mechanical ventilation or intervention
• Patient may be aware, afraid and anxious or be unconscious and sedated
• May be nursed in prone position affecting body image with fluctuations in respiratory and heart rates.
• Will need consideration of withdrawal of treatments once agreement of therapeutic goals are clear
• Self preparation ; In planning to tell them: How confident are you, your skills? Have you witnessed this being done well? What are you going to say? In the moment: Be prepared if someone is deteriorating. What might be worrying them? Take their questions seriously.
• Check their understanding- ask first what they know, think is happening-start from that point ……and LISTEN to what they say.
• Remember that open, honest and compassionate conversations are critically important- people will remember how you made them feel so demonstrate empathy for them and their situation.
• Covid learning: If they are “ill enough to die”, tell them (think about privacy, respect, tone of voice and pace using clear language/communication that is their norm and can be understood, avoid euphemisms)
• Remember to give them time to think, absorb by leaving silence. Be authentically ready to respond/stay with the impact
• Think about next steps for them, practical and emotional preparation.
Communicating sensitively
Communicating sensitively
Having end of life conversations
Cut and paste on link below to open webpage to hear Dr Atul Gwande’s experience and advice he was given
https://bit.ly/3d1On72
http://www.youtube.com/watch?v=45b2QZxDd_o
Early palliative care conversations meaningfully improve patients’ quality of life and mood, reduce the use of aggressive care at the end of life, improve clinicians’ documentation of preferences, and extend life expectancy of certain groups.6
Temel JS et al. Early palliative care for patients with metastatic non-small-cell lung cancer. NEJM 2010;363:733–42.
So, what helps us recognise dying?
• Attitude- open minded to the possibility that death is coming “What would it take to be a good death?”
• Assessment of pattern, evidence, observations, stories, what are the changes. Use tools if it helps clarity/discussion
• Trusting in your experience, clinical judgments and intuition• Its not one persons “job”. Team responsibility- share,
discuss, support colleagues, act & review (time may be very short)
• Preparedness to share uncertainty-“If they're sick enough to die”- they should know, recognising this is the key to enabling the best death possible in whatever
circumstances
We need your feedback to evaluate our new programme, please do take the survey monkey poll we will shortly email you….
The following slides contain additional
resources related to this workshop
Link to document
https://www.gov.uk/government/publications/liverpool-care-pathway-review-response-to-recommendations
https://www.gov.uk/government/publications/liverpool-care-pathway-review-response-to-recommendations
http://www.rowcrofthospice.org.uk/resources
Tip: download and print a copy for your workplace fromhttps://bit.ly/3gqd0Li
https://bit.ly/3gqd0Li
Local guides for very end of life
/
Visit web page to download a copies of a range of resources and local leaflethttps://www.rowcrofthospice.org.uk/how-we-can-help/referrals-access-services/clinical-resources
https://www.rowcrofthospice.org.uk/how-we-can-help/referrals-access-services/clinical-resources/https://www.rowcrofthospice.org.uk/how-we-can-help/referrals-access-services/clinical-resources
A useful booklet written for carers
https://www.rowcrofthospice.org.uk/wp-content/uploads/Rowcroft-Hospice-What-to-expect-when-someone-important-to-you-is-dying.pdf
Download by cutting and pasting on the link below to Rowcroftwebsite
https://bit.ly/33sO1DChttps://www.rowcrofthospice.org.uk/wp-content/uploads/Rowcroft-Hospice-What-to-expect-when-someone-important-to-you-is-dying.pdf
NICE Guidelines https://www.nice.org.uk/guidance/ng31
https://www.nice.org.uk/guidance/ng31https://www.nice.org.uk/guidance/ng31
The Australia-modified Karnofsky Performance Scale (AKPS)
RAG tool/Stability Score patients in final 6 – 12 months of life (GSF)1. Surprise Question 2. Clinical Indicators.
Stable
Green
The patients needs are stable
The patient has no symptoms
Offer discussion for Advance Statements/decisions
Identify Keyworker
Consider current and future clinical and personal needs
Gold Standard framework/register
Support for families/Carers assessed
Stable/Unstable
Condition likely
to change
Amber
Stable condition and symptoms managed at present with medications but
there is potential for change, OR Patients condition and/or symptoms
unstable and may require Medical/Specialist review
Offer discussion for Advanced Statements/Decisions, DNAR Status,
Preferred Place of Care, Treatment Escalation Plan
Current Clinical needs assessment tools for pain, depression etc
Yellow Folder, documentation that can be transferred with patient
Anticipating and planning for future possible clinical needs, GSF,
Prognostic indicators, Communicating needs
Support for families/Carers assessed
Rapidly
Changing
Red
Patient distressed by fluctuating and severe symptoms
Death may be difficult or sudden
G.P, Specialist Palliative care review/advice, 5 Priorities for care,
Anticipatory prescribing, Assessment tools, DNAR Status, Out of Hours /
Special Messages
Advance statements and Decisions
Support for families/Carers assessed
