Dementia. Aims of the session. End of Life Care- key publications 05/04/2018. End End of of Life Care in

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1 End End of of Life Care in Dementia Basic overview of some of the practice issues Basic overview of some of the practice issues Aims of the session Overview of key documents and policies related to Dementia End of Life Care. Overview of End of Life core competences and 7 principles Explore some of life and health related issues related to EOLC in Dementia including the Gold standard Provide basic communication tips for carers Advanced care planning in EOLC in Dementia /Local arrangements End of Life Care- key publications Ambitions for Palliative and End of Life Care.- A National Framework for Local Action Commissioning Person Centred End of Life Care (2016) One chance to get it right (2014) LACDP Common core competences and principles for health and social care workers working with adults at the end of life. (2010) End of life care strategy (2008) -4 th Report 2012 Dementia specific Living and dying with dementia in England: Barriers to care. Marie Curie and Alzheimer's Society report (2014) My life until the end : dying well with Dementia Alzheimer's Society (2012) Difficult conversations making it easier to talk to people with dementia about end-of-life issues (NPCC 2011) 1

2 The Alzheimer's report Living and Dying in Dementia (2014) identified 3 themes or barriers to care 1, Identification and planning Lack of timely and appropriate diagnosis Lack of recognition of dementia as a terminal condition Failure to identify dementia as a cause of death Ineffective advance care planning Alzheimer's Society (2014) It is important that people with Dementia have an opportunity to engage in EOL care discussions early in their course of illness while they still have the Mental Capacity and ability to express their wishes and preferences Alzheimer's Society 2

3 2, inequality of access Access to palliative care Access to hospice care Access to funding Discrimination Alzheimer's Society (2014) 3, quality of care Inconsistency in care standards in hospitals Inappropriate hospital admissions Lack of continuity of care Inappropriate interventions Failure to adapt practice to reflect the different nature of dementia Lack of support for carers End of life issues The Department of Health (2008) suggests that, for many, a good death would involve being treated as an individual, with dignity and respect, without pain and other symptoms, in familiar surroundings and in the company of close family and friends. Too often, however, people with dementia receive undignified treatment and are ending their lives in pain (Alzheimer's Society 2012, Health Service Ombudsman, 2011, Commission on Dignity in Care for Older People, 2012, Royal College of Psychiatrists 2011) and partnership between dementia care and palliative care are undeveloped (NCPC, 2009). 3

4 So, is dementia a terminal illness? What do we know? 30% of those over 60 will die with dementia The annual number of deaths is set to rise by 17% by 2030 More likely to die in a care home Less than 10% of people with dementia die at home Less likely to receive hospice or palliative care Less likely to have their spiritual needs considered It is a disease of the brain, the brain is dying/failing End of Life core competences and 7 principles overview (Skills for Health 2014) 1.Choices and priorities of the individual are at the centre of planning and delivery 2. Effective, straightforward, sensitive and open communication between individuals, families, friends and workers underpins all planning and activity. Communication reflects an understanding of the significance of each individual s beliefs and needs 3. Delivery through close multidisciplinary and interagency working 4. Individuals, families and friends are well informed about the range of options and resources available to them to be involved with care planning 5. Care is delivered in a sensitive, person-centred way, taking account of circumstances wishes and priorities of the individual, family and friends 6. Care and support are available to anyone affected by the end of life and death of an individual 7. Workers are supported to develop knowledge, skills and attitudes. Workers take responsibility for, and recognise the importance of, their continuing professional development 4

5 Stage 1 (Early Dementia): Dignity through autonomy: Independence Not a trivial stage Dignity is much more difficult in dementia The individual often cannot cooperate in the care. Dignity for all involved in a dementia situation the primacy of the person with dementia and also the carers Person may or may not have had a dementia diagnosis but be exhibiting symptoms Diagnosis of Dementia is key to best quality of future care Carers in this stage need support acknowledging the burden on the family/carers Setting up plans for the future help with food preparation, personal hygiene; PPC; end of life considerations; Do Not Attempt Resuscitation Order Important to know who are the decision makers enduring power of attorney and legal guardian Mental capacity assessment may be fluctuating Needs constant monitoring and readjustment Dementia will progress and when that happens someone needs to step in Keeping the person at home; in their comfort zone may be periods of respite, either at home or another facility Optimal management of co existing conditions eg vascular disease; diabetes; There are medications that can slow the decline limited effect at best 6 months improvement in 30% of people Hospitalisation needs careful planning to minimise potential delirium or of the person becoming upset or agitated 5

6 STAGE 2 GOAL HERE IS SAFETY Stage 2 occurs gradually When family/carers cannot cope with the person at home any longer may need a roster system or consider care homes Safety becomes difficult to maintain eg. Fire in the house, a sore that isn t healing, Carers family begins to identify the carer is suffering as a result of caring Not all about pristine medical management of comorbidities It is about finding out what it is that gives the person happiness and enjoyment This may be different to what they enjoyed before STAGE 3 COMFORT PALLIATIVE CARE AND SYMPTOM CONTROL People in stage 3 may be mobile or not These people are our most frail and vulnerable members of society The fundamentals of caring are paramount simple comfort measures - sitting with the person, stroking their hand, listening to music, sunlight as well as everyday hygiene measures They are no longer as they were they may be agitated and tormented Drugs work poorly but we owe them the best symptom control We need to be prepared Issues of consent are very pertinent to this group of people Interactions between drugs and side effects eg opiates, anti cholinergic medication (Cogentin) for parkinsons Anticipatory prescribing with care for anticipated symptoms Symptoms common are psychotic symptoms aggression, agitation, confusion Are they really that distressed by their symptoms 6

7 Anti psychotic medication have modest benefit and many side effects Sedative drugs eg benzodiazepines have significant side effects and can cause falls As the end of life approaches stopping unnecessary medication/treatments eg cholesterol lowering drugs; other conditions that may occur eg a cancer; pneumonia Non drug treatments physical touch; interaction with pets; music; environmental factors Pain recognition and management Pain Management How do we recognise the signs of pain in Dementia? What tools can we use? Painad Abbey Doloplus-2 scale Explore family s views, previous responses to pain Diagnostic overshadowing Some of the health issues seen in later stages of dementia Loss of mobility Eating and weight loss Problems with continence Unusual behaviour Immobility Side-effects of medication Illness and discomfort Medication What care or treatment may be offered? 7

8 3 ways In some people no specific cause of death is found, other than dementia. Summary 1. Death caused by another medical condition 2. Interplay between dementia and another condition 3. End stage dementia Evidence suggests that access to services is inequitable Challenges we may face Difficult to predict nature and timing of death End of Life care in dementia can be considered as a broad approach over many years to address needs Inequitable access to services and appropriate treatment What is likely to cause the person with dementia eventual death? Pneumonia is listed as the ultimate cause of death in up to two-thirds of people with dementia. Third of people at any one time will be in the later stages of dementia. Although dementia is a life-shortening illness, another condition or illness (such as pneumonia? an infection in the lung) may actually cause a person's death. The person's ability to cope with infections and other physical problems will be impaired due to the progression of the disease 8

9 Recognising advanced stages of dementia How would you know if person was in the last 6-12 months of life? Surprise question GSF, FAST More than 50% will have 2 and 5 hospital admissions in the last year of life, with an average of 34 days spent in hospital in the final year. Events preceding active dying- up to 50% will die within 6 months -Recurrent infections, pneumonias, not responding to antibiotics -Frequent fevers -Increased eating and swallowing problems, weight loss, cachexia -Unhealed skin ulcers -Reduced activity, communication and withdrawal Dementia Prognosis indicator Guidance Gold standard 2005 Recognising when someone is reaching the end of life Unable to walk Urinary and faecal incontinence No consistently meaningful communication Unable to dress without assistance Barthel score less than 3 Reduced ability to perform activities of daily living Plus any of the following : 10% weight loss in previous six months without other causes, pyelonephritis of UTI, Serum Albumin 25g/l also 1. Reduced eating and swallowing As someone's condition worsens and they get to within a few days or hours of dying, further changes are common. The person will often: deteriorate more quickly than before lose consciousness be unable to swallow become agitated or restless develop a characteristic irregular breathing pattern have cold hands and feet (Alzheimer's Society 2014) 9

10 Communication some basic tips for carers Non-verbal communication from you, through gestures, body language, facial expression and touch, can help. Use appropriate physical contact such as holding hands or a hug to reassure the person that you are there for them. Take your time and look for non-verbal signals from the person with dementia. Continue talking to the person, even if you don't think they can follow what you are saying. They will understand at some level and may respond to the tone of your voice even if the factual content is lost. Self Compassion How do you look after yourself? Are you supported at work? Who supports you? Supervision / reflection / team meetings Planning Making decisions- e.g. DNR, choice of where, Advance statements etc. Pain- Recognition food and fluids Infections-antibiotics use? Psychological, social and spiritual needs Place of death Support for carers, family and close friends After death 10

11 Video- End of Life care, Achieving dignity for those with dementia Tommy Whitelaw: Carers story Tommy on Tour(12.51) Y_3y0yXM or The role of Admiral Nursing and End of Life Care Admiral Nurses are registered nurses who have specialist knowledge of dementia care; supporting families affected by dementia. Admiral Nurses provide education, leadership, development and support to other colleagues and service providers. Admiral Nurses aim to make a positive difference to the lives and experiences of all those affected by dementia. Named Admiral Nurses by the family of Joseph Levy CBE BEM, who founded DementiaUK,Joe was known affectionately as Admiral Joe for his love of sailing Each Admiral Nurse service is operated in partnership between DementiaUK and the host organisation which can include NHS, charities The role of Admiral Nurse in dementia care Pre diagnosis Diagnosis Living with dementia End of life Grief and bereavement Supporting families affected by dementia through the trajectory of dementia 11

12 EMOTION-FOCUSED STRATEGIES Acceptance (learning to live with it) Emotional support Humour Positive reframing (trying to see it in a different light) Religion PROBLEM-FOCUSED a STRATEGIES Active coping (taking action to try to make it better) Instrumental support (getting help and advise from other people) Planning (trying to come up with a strategy) DYSFUNCTIONAL COPING STRATEGIES Behavioural disengagement (giving up trying to deal with it) Denial Self-distraction Self-blame Venting (saying things to let my unpleasant feelings escape) How does dementia affect families? Impact not to be underestimated. The grief and guilt Play a vital role in monitoring the person s health. Many depressed, anxious, isolated. Acknowledge their distress, show compassion, understanding and patience This will help build confidence, resilience and make preparations Eating and drinking: fear starving to death and feel to blame Copying with the rallying, progressive dwindling Total Pain Disease-a specific pathology affecting an organ, tissue or system in the body Illness- the subjective experience of the disease in the unique context of an individual s life-past, present and anticipated future Explore loss history, transition to patient, series of losses Whole person care- Physical, spiritual, social and emotional -inter-connected Staff pain, team/paid carers pain, my pain, family pain Distress, suffering Impact on family 12

13 So, how do we respond? Shifting goals of care to comfort, palliation and reducing distress Anticipatory health care planning, begin conversations Carers-what is sustaining them, where are they getting their strength from? Help build their confidence and resilience Not always about providing solutions or answers Staying with the person, the pain, the uncertainty, being present with the person, the carer. Who s distress is it? The anticipatory grief of dementia, bereavement Questions to consider At what point should end of life services be available to service users and their families? What sort of assessments should we use? In summary the Alzheimer s society advocates that good quality end of life care should consider Advance planning for end of life care Improved training for health and social care professionals Focus on quality of life, rather than length of life, in the final stages of dementia Improved emotional and spiritual support Improved planning and co-ordination of care. Implement the recommendations of the Leadership Alliance for the Care of Dying People 13

14 A quote from Bob Wright; that the person was more valued than the person s role. It is our own humanity that is experienced by relatives in those situations. They remember many personal details about us.. If your role, experience or expertise, appears to have little to offer, or if you feel ineffective or impotent, do not be afraid to fall back on your own personal skills, your own humanity. People remember with warmth and are grateful for the person they meet on that awful day references Alzheimer's Society (2012) My life until the end: dying well with dementia Baker et al, (2012) Anticipatory care planning and integration: A primary care pilot study aimed at reducing unplanned hospitalisation. British Journal of General Practice, 62(595):e Commission on Dignity in Care for Older People (2012) Delivering dignity: Securing dignity in care for older people in hospitals and care homes. A report for consultation. Commission on Dignity in Care for Older People, London. Cox and Cook, (2002) Caring for people with dementia at the end of life in Hockley J, Clark D, eds. Palliative care for older people in care homes. Open University Press, Buckingham: Department of Health, (2008) End of life care strategy. Neuberger (2013), More Care, Less Pathway: Independent review of the Liverpool Care Pathway. General Medical Council (2010). Treatment and care towards the end of life: Good practice in decision making. General Medical Council, London. Health Service Ombudsman (2011). Care and compassion? Report of the Health Service Ombudsman on ten investigations into NHS care of older people. The Stationery Office, London. Hughes-Hallet, T, Craft, A, and Davies, C (2011). Funding the right care and support for everyone: Creating a fair and transparent funding system: The final report of the Palliative Care Funding review. Mitchell et al (2009). The clinical course of advanced dementia. New England Journal of Medicine, 361(16): NCPC (2009), The Power of Partnership: palliative care in dementia. NICE-SCIE (2007) Dementia clinical guideline: supporting people with dementia and their carers in health and social care. Office of National Statistics (ONS) (2011). Deaths registered in England and Wales in 2010, by cause. Office of National Statistics (ONS) (2014). National Survey of Bereaved People (VOICES), Leadership Alliance for the Care of Dying People (2014) One Chance to Get it Right Pace V, Treloar A & Scott S (2011) Dementia from Advanced disease to bereavement. Oxford Uni. Press Royal College of Psychiatrists (2011). National audit of dementia. Sampson, E, Gould, V, Lee, D, and Blanchard, M (2006). Differences in care received by patients with and without dementia who died during acute hospital admission: a retrospective case note study. Age and Ageing, 35(2):