Providing End of Life Care in Dementia Time to ‘Walk the Walk’ Rather than Just ‘Talk the Talk’ Lesley Jones Advanced Practitioner RMN, MA, MSc Gillian Drummond Matron / Manager RMN, BSc (hons), PGCE An example of implementing policy into best practice

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

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

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) Everybody’s Business (2005) NICE Dementia Guidance (2006) End of Life Care Strategy (2008) Dementia Strategy – Living well with Dementia (2009)

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, guidance, and a commitment to improving end of life care into a reality……….

The Ward Mental 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 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 Walk

NeedNeed? Need Current Practice Model? Shared Care Developing & Training Workforce Training Protocol for Practice Delivering End of Life Care Delivering End of Life Care 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 deathdeath

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 practicepractice

Developing a Workforce Primarily mental health workforce Practice nurse Assistant practitioner Advanced practitioner Increased 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 DriversDrivers, Training

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

Challenges Environment Developing Skills Convincing Others Managing Risk Diagnosing Dying Knowing the Person

Future? Complex care suite Preferred priorities for care Evaluating relatives experiences

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 Simey End of Life Care Promoting Comfort Choice & Well Being for Older People Help the Aged 2005

Any Questions

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