providing end of life care in dementia time to ‘walk the walk’ rather than just ‘talk the...
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Providing End of Life Providing End of Life Care in DementiaCare in Dementia
Time to ‘Walk the Walk’ Rather Time to ‘Walk the Walk’ Rather than Just ‘Talk the Talk’than Just ‘Talk the Talk’
Lesley Jones Advanced PractitionerRMN, MA, MSc
Gillian DrummondMatron / ManagerRMN, BSc (hons), PGCE
An example of An example of implementing policy implementing policy
into best practiceinto best practice
AimAim To demonstrate how
an end of life philosophy & model
of care has been developed within an
acute in-patient dementia
assessment ward for people with complex
care needs
Increased Focus on Increased Focus on End of Life Care in End of Life Care in
Dementia - Dementia - ........Some Some Thoughts WhyThoughts Why Population is ageing
Shift in the profile of dementiaUpsurge of concern & interest in the circumstances in which older
people dieNational Policy and Guidance
Key Policy & Key Policy & GuidanceGuidance
• Gold Standards Framework, Liverpool Care Pathway, Preferred Priorities for Care
• NSF Older People (2001)• NHS End of Life Care Programme (2004
onwards)• Everybody’s Business (2005) • NICE Dementia Guidance (2006)• End of Life Care Strategy (2008)• Dementia Strategy – Living well with
Dementia (2009)
500 000 people die in England each year
54% of complaints in acute hospital settings relate to poor end of life care
Whether it be personal or professional most of today's audience will be able to recall
an individual who has not received good end of life care
How people die remains in the memory of those who live on. This includes relatives,
carers and the care team
95% + people with dementia will need 24hr care at the end of their lives
Approx length from diagnosis to death can be more than 8 years
Symptoms will increase over this time
Inadequacies in end of life care for people with dementia are now acknowledged
Dementia not acknowledged as a terminal illness
Assessing when the dying phase has been entered and how symptoms can be managed can be complex when an individual is no longer able to verbally communicate
Turning policy, Turning policy, guidance, and a guidance, and a commitment to commitment to
improving end of improving end of life care into a life care into a reality……….reality……….
The WardThe WardMental Health
Foundation Trust
Community Hospital
28 bedded mixed sex acute organic admission ward
Close to local hospice
Individuals are admitted whose needs cannot be
safely met elsewhere
High prevalence of physical co-morbidity
Multi disciplinary approach to
care
End of Life Care in End of Life Care in Dementia?Dementia?
Historically it was acknowledged that a percentage of patients die within the service
Care provided at this time was
often based upon intuition as opposed to
an evidence base
Nationally a palliative approach in dementia is becoming more widely accepted.
Paucity of examples of how
end of life care in dementia is
actually being delivered
Walking the WalkWalking the Walk
Need?Need?
Current Current PracticPracticee
ModelModel??Shared Shared
CareCare
Developing & Developing & Training Training
WorkforceWorkforce
Protocol for Protocol for PracticePractice
Delivering End of Delivering End of Life CareLife Care
Our Journey!Our Journey!
A number of individuals illness progressed during their admission to
end of life
For these individuals the team felt strongly that they should not be moved
to a different care provider
Staff had established relationships with the individual and their family
Fundamental belief that person centred care is crucial from diagnosis to death
Reviewed current national guidance - Gold Standards Framework, Liverpool Care Pathway
Attempted to establish what other dementia care providers were utilising
Spoke with staff who provided care during this time to gain an understanding of their skills, views, knowledge base, ideas for developing practice
Developing a Developing a WorkforceWorkforce
Primarily mental health workforce
Practice nurseAssistant practitionerAdvanced practitionerIncreased
medical cover
Dementia & Palliative Care
Liverpool Care Pathway (enhanced)
Diagnosing Dying
Symptom Recognition
Symptom Control
Breaking Bad News
Recognising Assessing Managing Pain
Medication / Algorithms
Re-hydration /Food
Spirituality & Personhood
Using Sub Cut Lines
Syringe Drivers
,
TrainingTraining
Delivering End of Life Delivering End of Life CareCareAdoption of the LCP (enhanced)
Trained and updated workforcePolicies and guidelines in place to support
practiceShared care approach on an individualised
basisHonest and open communication with
relatives (resuscitation, illness progression, antibiotics, transfers, artificial nutrition and re-hydration)
Offer a choice regarding where end of life care should occur
Person centred framework
ChallengesChallenges Environm
ent
Developing Skills
Convincin
g OthersM
anaging
Risk
Diagnosin
g Dying
Knowing the Person
Future?Future?Complex care suite
Preferred priorities for care
Evaluating relatives experiences
The Team!The Team!
“What’s it like to be 97 & in the last phase of life? After a lot of cogitating – cogitating is a very suitable occupation
of the ageing – I have come to the conclusion that I simply don't know. I
can only reply as I have done on every birthday since time began, that I feel no
different. I’m still the same me that I have always been, the same me that I was yesterday and will be tomorrow”
Margaret SimeyMargaret SimeyEnd of Life Care
Promoting Comfort Choice & Well Being for Older People
Help the Aged 2005
AlfredAlfred• Vascular dementia, • Physical co-morbidity• Caring family• Admitted for assessment • Deterioration in physical condition during
assessment process• On going communication
with family re treatment options
• Shared care approach to end of life care – team, family, palliative care, patients wishes
• Dignified death