Providing End of Life Care in Dementia Time to ‘Walk the Walk’ Rather than Just ‘Talk the Talk’

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Providing End of Life Care in DementiaTime to
Walk the Walk Rather than Just Talk the Talk
An example of implementing policy into best
practice

• Lesley Jones
• Advanced Practitioner
• RMN, MA, MSc
• Gillian Drummond
• Matron / Manager
• RMN, BSc (hons), PGCE

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Aim
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
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Increased Focus on End of Life Care in Dementia -
....Some Thoughts Why

• Population is ageing
• Shift in the profile of dementia
• Upsurge of concern interest in the
  circumstances in which older people die
• National Policy and Guidance

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Key Policy Guidance

• Gold Standards Framework, Liverpool Care Pathway,
  Preferred Priorities for Care
• NSF Older People (2001)
• NHS End of Life Care Programme (2004 onwards)
• Everybodys Business (2005)
• NICE Dementia Guidance (2006)
• End of Life Care Strategy (2008)
• Dementia Strategy Living well with Dementia
  (2009)

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How people die remains in the memory of those
who live on. This includes relatives, carers
and the care team
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
54 of complaints in acute hospital settings
relate to poor end of life care
500 000 people die in England each year
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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
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
Inadequacies in end of life care for people with
dementia are now acknowledged
Dementia not acknowledged as a terminal illness
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Turning policy, guidance, and a commitment to
improving end of life care into a reality.
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The Ward
28 bedded mixed sex acute organic admission ward
Community Hospital
Multi disciplinary approach to care
Mental Health Foundation Trust
Individuals are admitted whose needs cannot be
safely met elsewhere
Close to local hospice
High prevalence of physical co-morbidity
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End of Life Care in Dementia?
Care provided at this time was often based upon
intuition as opposed to an evidence base
Historically it was acknowledged that a
percentage of patients die within the service
Paucity of examples of how end of life care in
dementia is actually being delivered
Nationally a palliative approach in dementia is
becoming more widely accepted.
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Walking the Walk
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Our Journey!
Delivering End of Life Care
Protocol for Practice
Model?
Developing Training Workforce
Shared Care
Current Practice
Need?
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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
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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
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Developing a Workforce

• Primarily mental health workforce
• Practice nurse
• Assistant practitioner
• Advanced practitioner
• Increased medical cover

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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 ,
Training
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Delivering End of Life Care

• Adoption of the LCP (enhanced)
• Trained and updated workforce
• Policies and guidelines in place to support
  practice
• Shared care approach on an individualised basis
• Honest 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

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Challenges
Environment
Convincing Others
Diagnosing Dying
Managing Risk
Knowing the Person
Developing Skills
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Future?
Complex care suite
Preferred priorities for care
Evaluating relatives experiences
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The Team!
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Whats 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. Im still the same me that I have
always been, the same me that I was yesterday and
will be tomorrow Margaret Simey End of Life
Care Promoting Comfort Choice Well Being for
Older People Help the Aged 2005
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Any Questions
lesley.jones_at_gmw.nhs.uk gillian.drummond_at_gmw.nhs.u
k
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Alfred

• 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