Dr Victor Pace St Christopher s Hospice February 2018
It s making the headlines
Why does advance matter in dementia?
Why does this matter? Since 2015, dementia has become the leading cause of death in the UK ONS: Deaths from 5 leading causes 2015 Https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/bulletins/deathsregisteredinenglandandwalesseriesdr/2015
Why does this matter? Since 2015, dementia has become the leading cause of death in the UK
Why does this matter? Since 2015, dementia has become the leading cause of death in the UK Age 40-64: 1 in 1000
Why does this matter? Since 2015, dementia has become the leading cause of death in the UK Age 65-69: 1 in 50
Why does this matter? Since 2015, dementia has become the leading cause of death in the UK Age 70-79: 1 in 20
Why does this matter? Since 2015, dementia has become the leading cause of death in the UK Age 80 + : 1 in 5
Why does this matter? Since 2015, dementia has become the leading cause of death in the UK Age 95 + : 1 in 3
Why does this matter? Since 2015, dementia has become the leading cause of death in the UK Just another 1000 people dying at 95 instead of 85 will increase the number of people with dementia by another 130. Age 95 + : 1 in 3
Why does this matter? Since 2015, dementia has become the leading cause Changes in death certification of death in the UK 2006 dementia mentioned in 39.9% 2013 dementia mentioned in 63% More likely if Older More severe dementia Death in hospital or care home Alzheimer's > vascular > Lewy Body dementia Perera Age Ageing 2016
Why does this matter? Institutional care of people with advanced dementia is often poor Francis Report I could not believe my eyes. The door was wide open. There were people walking past. Mum was in bed with the cot sides up, and she hadn t got a stitch of clothing on. I mean, she would have been horrified. She was completely naked and... covered in faeces she was
In advanced distressing inappropriate expensive longer admissions, more readmissions dementia, acute nhospital admission is... dangerous: x4 mortality Sampson 2009 half the survival within the following year Sampson 2012
Hospitalised advanced dementia patients: the worst of both worlds Too many inappropriate interventions invasive investigations e.g. blood gases tube feeding urinary catheters longer stays Too few useful interventions palliative care referral pain control prescription of palliative medication spiritual care referral Sampson Age and Ageing 2009
And yet it continues... 42% of all acute hospital admissions are of patients with dementia 25% have MMSE 0-15 Most admissions are for infections In 2011, approximately 10,000 people with dementia died in NHS hospitals in England and Wales www.ons.gov.uk
Recurrent infections have a short prognosis in people with dementia Teno JAMA 2013 Most infections can be treated as successfully in Nursing Homes Loeb JAMA 2006
But it is not mainly about hospital admission avoidance...
But it is not mainly about hospital admission avoidance... it is about honouring people s wishes about their care even when they can no longer express them
What do we need to know about dementia before we do advance?
Trajectories
How quickly does dementia progress? MCI changes with increasing age 22% Mild 25% Moderate 36% Yearly transitions with Alheimer s Davis, Curr Alheimer Res 2018 Severe Death 16%
Where do they live?
Where do they live? Age % in residential care 65-74 26.6 75-84 27.8 85-89 40.9 90+ 60.8 Knapp M, Prince M: Dementia UK: The full report Alzheimer s Society, London 2007
Where do they live? Where do they die? Age % in residential care 65-74 26.6 75-84 27.8 85-89 40.9 90+ 60.8 Knapp M, Prince M: Dementia UK: The full report Alzheimer s Society, London 2007
Where do they live? Age 65-74 26.6 75-84 27.8 85-89 40.9 90+ 60.8 % in residential care Knapp M, Prince M: Dementia UK: The full report Alzheimer s Society, London 2007 Where do they die? Deaths certified as from dementia, senility or Alzheimer s in England 2007-2009 Care home 59% Hospital 32% Own home 8% National End of Life Care Intelligence Network. Deaths from Alzheimer s disease, dementia and senility in England. 2010
What do npeople with dementia ndie of?
What do npeople with dementia ndie of? Mainly infections bronchopneumonia aspiration pneumonia
What do npeople with dementia ndie of? Mainly infections bronchopneumonia aspiration pneumonia Cardiovascular myocardial infarction stroke - especially if on antipsychotics
What do npeople with dementia ndie of? Mainly infections bronchopneumonia aspiration pneumonia Cardiovascular myocardial infarction stroke - especially if on antipsychotics Other pulmonary emboli - 8% in one series occult malignancy 4-8%
In a nutshell dementia has a different trajectory long and low-level is strongly associated with multimorbidity is strongly associated with frailty produces profound psychological and behavioural disturbances gives less intense and complex symptoms, but very disabling has massive emotional and social consequences, for patient and family
What are the difficulties in advance?
Barriers to ACP with frail and older patients GPs in focus groups identified four main barriers unclear prognosis and unclear future needs lack of services issues documenting and ensuring wishes are respected pressure on GP time Sharp British J General Practice 2018
Difficulties particular nnnnn to dementia Long time course between plan and implementation Sometimes, cognitive problems e.g. language, fluctuant cognition Resistance to thinking of future life with dementia Sometimes, no family members able to have discussion
How do we do advance?
Advance Directive to Refuse Treatment is usually legally binding Proxies nominated Lasting Power of Attorney for Health and Welfare Advance Care Plan is not legally binding but must be consulted It s The Law
Are proxies any good? Systematic reviews show proxies get it wrong one third of the time Training with patient can actually make agreement worse! Need discussions, written information, counselling support to disentangle own feelings
What do you understand about your condition?
What do you understand about your condition? What are your concerns, fears, worries?
What do you understand about your condition? What are your concerns, fears, worries? What do you want to happen?
What do you understand about your condition? What are your concerns, fears, worries? What do you want to happen? What do you not want to happen?
What do you understand about your condition? What are your concerns, fears, worries? What do you want to happen? What do you not want to happen? What are your priorities?
Who needs to Patient Main carer be included? Other family members or friends the patient wants involved - interpreters Maybe key professional/s
Encourage people not to make impossible promises - not I will NEVER put you in a care home but I will do my best to keep you at home as long as is humanly possible Do not be too prescriptive e.g. place of care vs qualities of care Values statement - opens up all sorts of interesting and hopefully ongoing discussions for family Some cautions
Do not allow it to be a tick-box excerise, often driven by institutional targets Where is your preferred place of death? Make it a dialogue, ongoing if possible Use it as your best opportunity for education It is an opportunity to reach the family too- don t waste it Some cautions
Useful documentation Some examples ResPECT PEACE document Gaster Dementia Directive
Gaster Dementia Directive
Most measure health care utilisation measures e.g. length of hospital stay, place of death A few measure patient oucomes e.g. physical and emotional distress, quality of life Dixon JPSM 2018 What do the studies measure?
But does advance work in dementia?
In Care Homes, Advance Care Planning may reduce unnecessary interventions Gozalo NEJM 2011 and improve other outcomes Molloy JAMA 2000 But other studies do not confirm this Vandervoort Int Psychogeriatr 2011; Nicholas Health Aff 2014 In US hospitals, less likely to die in hospital or be admitted to ITU than community patients with no ACP. Hilgeman Aging Mental Health 2014
Findings from a recent systematic review ACP sometimes led to different interventions in a crisis ACP in Care Homes was often coupled with staff training, patient and carer training and documentation which also changed the culture of the Care Home re end of life care. May also improve communication between staff and with doctors Dixon JPSM 2018 see also Palan Lopez J Palliat Medicine 2017
Could be that discussions between Care Home nurses and patients were not sufficiently detailed or frequent to bear fruit Vandervoort PLoS One 2014 We do not know much about the quality of care of patients who were not admitted to hospital or discharged to care home. Many unknowns remain
In conclusion Advance statements matter because they reduce the risk of unwated outcomes, make health care more personal and express the voice of the person with dementia when they can no longer speak for themselves Still a lot to learn and develop Public buy-in essential - herd immunity Statements need to be specific, personal and driven by the wishes and values of the person with dementia