Karen R. Waters. Advanced Nurse Practitioner and Professor Martin Johnson, University of Salford

Transcription

1 Dying with dementia: A retrospective case note analysis of nursing and care home residents who died in hospital. Karen R. Waters. Advanced Nurse Practitioner and Professor Martin Johnson, University of Salford

2 Outline of presentation Themes from the literature Aims of the study Population and sample Findings Discussion Recommendations Local action

3 Summary of main themes from literature Dementia is a terminal disease (Mitchell et al. 2009) End stage dementia is characterized by recurrent infections, (particularly pneumonia) and reduction in oral intake (Lamberg et al.2005). Patients are often treated as acutely ill when they are in the final weeks of life (Helton et al 2006)

4 Main themes from the literature cont d End stage dementia is poorly recognised. (Mitchell et al 2009) Patients may not be afforded good palliative care, e.g. less referral to specialist services, less palliative medication (Hughes et al 2005, Sachs et al 2004) In England nearly 1/3 rd patients with dementia die in hospital, in the Netherlands it is closer to 3% ( Houttekier et al 2010)

5 Overall aim of study To explore the trajectories of nursing and care home residents with dementia who died in an acute hospital setting.

6 Aims of study relating to this presentation:- Were the Gold Standards Framework (GSF) dementia specific prognostic indicators useful in predicting death? In what proportion of patients were end of life tools such as advance care planning and the integrated pathway for the dying used? What characterised the end of life journeys for this group of patients?

7 Underpinning documents outlining best practice for end of life care in dementia Gold Standards Framework (NHS 2005) National audit of dementia ( 2007) DH Dementia Strategy (2009) National Council for Palliative Care End of Life Dementia Quality markers (2010) Dementia specific prognostic indicators Use of an end of life pathway Objective 12:people and carers to be involved in planning end-of life (EOL) care, Local EOL pathways, good pain relief and use of tools such as Preferred Priorities of Care. Use of Advance Care planning, documentation of processes for assessing end of life needs; identification of wishes and preferences; communication with GP

8 Method retrospective case note analysis Strength - can identify population and select appropriate records; Weaknesses:- Availability of case notes, Data dependent on quality of documentation. If it is recorded it happened If it is not recorded it did not happen

9 Population Population: Patients coded with dementia as any diagnosis who died in hospital over 1 year period (April ) in an acute NHS Trust in North of England. Identification (by hand) of Nursing or Care Home residents.

10 Obtaining sample 66 names identified Medical records of deceased stored in off site warehouse Access to case notes was time consuming. Aimed for a sample of 40 Retrieved 32, many case notes missing!

11 Sample: Possibly skewed! NURSING HOME RESIDENTIAL Totals MALE FEMALE

12 Documented Reasons for sending resident to hosptial. Reasons for admission 3 3 NH RH 5 6 shortness of breath 4 General deterioration Infection 1 worsening neurological status 0 1 acute confusion 3 other

13 Admitting Diagnoses Infection/sepsis 19 Other 7 End of life care 3 Missing 3

14 GSF Dementia specific prognostic indicators {DSPI} (GSF 2005) All of these One of these Unable to walk Unable to dress without assistance Urinary and faecal incontinence 10% weight loss over 6 months without other cause Pyelonephritis or urinary tract infection Serum albumin of 25g or less Barthel score <3 Severe pressure sores stage 3 or 4 No meaningful communication Reduced activities of daily living Recurrent fever Reduced oral intake or weight loss Aspiration pneumonia

15 GSF dementia specific criteria 12/30 (40%) met all the criteria 12/30 ( 40%)met more than half All met some

16 Characteristics of End Stage Dementia in sample Characteristic Number % Difficulty with % eating and drinking Recurrent fever or % previous pneumonia Both % Neither %

17 Suggested changes to DSPI ALL OF THESE No consistently meaningful communication Poor oral intake Recurrent infection ONE OF THESE Aspiration pneumonia Pyelonephritis or UTI Albumin 25g/l or less Severe pressure sores Decreased ADLs

18 Functional Assessment Staging Tool (FAST scale) (Reisberg,1984) The FAST scale has seven stages: 1 normal adult 2 normal older adult 3 early dementia 4 mild dementia 5 moderate dementia 6 moderately severe dementia 7 severe dementia

19 Severity of dementia Chart 3.7: FAST scores nursing residential FAST SCORE 4 FAST SCORE 5 FAST SCORE 6 FAST SCORE 7

20 End of life activities End of Life activity Number ( n=31) % Identification of dying phase Discussion with family and/or NOK Review of preferences for place of death Involvement of GP Advance care planning 1 3.2

21 Preferred place of death Evidence that return to care or nursing home had been considered was found in 10 (32%) case notes. Difficult to ascertain reasons this did not happen, includes home requesting reassessment (3), refusal to take patient back (3). No reasons ascertained in 4 cases

22 Use of Integrated Care pathway for Dying (ICP) 25 patients placed on ICP Time before death varied from 3.5 hours to 24 days, the median being 1 day and mean 3. In 12 cases the ICP was mentioned prior to implementation Sporadic administration of palliative medication ( average of <1 administration per day)

23 Time on ICP more than one week, 3 5 to 6 days, 3 less than 1 day, 9 3 to 4 days, 4 1 to 2 days, 6

24 Distressing symptoms Pain 15 Agitation 16 Aspiration 10 deemed to be at risk 6 appeared to suffer no distress and none suffered all

25 Burdensome interventions Arterial blood gases 15 (47%) mostly in A&E Bladder catheterisation 13 (40%) Intravenous antibiotics 25 (78.2%) 18 (56.2%) had documented suspicion of infection, a further 6 has blood results suggesting infection

26 Use of Intravenous antibiotics 11 (42.3%) of those given IVABs fulfilled all the GSF dementia specific criteria for end of life. A further 8 (25%) fulfilled 4 or 5 of these 12 (37.5%) had elevated serum sodium indicating dehydration due to lack of oral intake Suggests a palliative approach may have been appropriate

27 Causes of death Cause of death Primary Secondary Bronchopneumonia 11 1 Dementia 4 15 Sepsis 4 0 Cardiovascular disease 4 3 Other 3 5

28 Patient trajectories Category Number Description Sudden death 2 Cardiac arrest and quick death our of acute hospital Critical event leading to death 5 Event such as MI, critical ischaemia which led to death Other medical conditions 4 Malignancies, end stage Parkinson s disease Indecision 3 On and off LCP Appropriate end of life care Presumed treatable episode without agitation Presumed treatable episode with agitation 2 Recognised as dying on admission and placed on LCP by geriatricians 9 Evidence of being end of life, all had at least one course of antibiotics, 8 on LCP, 5 for less than one day 7 As above plus agitation

29 Double jeopardy of dying with dementia in an acute hospital? Half of this sample were not recognised as being at the end of their lives and as a consequence were:- Treated for acute illness which may involve some discomfort Not commenced on ICP at earliest opportunity

30 Double jeopardy - continued Return to nursing homes appeared problematic Not afforded full benefit of palliative care and medications

31 Limitations of study Small sample Less than half of potential notes available for audit Only that which is documented could be audited

32 Discussion points GSF indicators may require revision potential for further research FAST scale may be a simple and useful tool Better recognition of the final stages of dementia may lead to less burdensome interventions, enhanced end of life planning and better palliative care

33 Recommendations Education of all health care professionals and undergraduate and postgraduate levels in recognition of end stage dementia Use of advance care planning in Care/Nursing homes Rapid return to Care/Nursing home if in best interests Timely implementation of ICP Full use of palliative medications

34 Local actions cross boundary and interagency working Network of Advanced Nurse Practitioners working in hospital and nursing homes to:- Enhance advanced care planning Enable good quality end of life care Prevent unnecessary hospital admissions

35 Local actions - cont d ANPs Increase information exchange Facilitate rapid discharge. Use of FAST tool in both settings Use of personal information documents This is me

36 Local actions - cont d Emphasis on conversations with home staff and family as soon as possible on admission Communication with GPs, - use of FAST stage in discharge letters and suggestion of end of life conversations with family Planned repeat of study this year alongside study in care and nursing homes.

37 To effect dying well with dementia any

38 References Helton, M.R., van der Steen, J., Daaleman, T.P., Gamble, G.R. and Ribbe, M.W. (2006) A cross-cultural study of physician treatment decisions for demented nursing home patients who develop pneumonia. Annals of Family Medicine 4:221-7 DOI: /afm.536 Houttekier et al (2010) Place of Death of Older Persons with Dementia. A Study in Five European Countries. Journal of the American Geriatrics Society 58(4) Hughes, J., Jolley, D., Jordan, A and Sampson, E. (2005) Palliative care in dementia: issues and evidence. Advances in Psychiatric Treatment 13:251-60

39 References continued Mitchell, S. Teno, J. Kiely, D. Shaffer, M. Jones, R., Prigerson, H. Volicer, L, Givens, J. and Hamel, M (2009) The clinical course of Advanced Dementia. New England Journal of Medicine 361: Lamberg, J. Person, C. Kiely, D. and Mitchell, S.(2005) Decisions to hospitalize nursing home residents dying with advanced dementia. Journal of American Geriatrics Society 53: Sachs, G. Shega, J, Cox-Hayley, D. Barriers to excellent end-of-life care for patients with dementia. Journal General Internal Medicine 19:

40 ANY QUESTIONS?