Staff Perceptions of Ageist Practice in the C linical S etting: Practice Development Project

1. Staff Perceptions of Ageist Practice in the Clinical Setting: Practice Development Project Jenny Billings, Research Fellow Commissioned by East Kent Coastal PCT

2. Aims of the Study • Identify and describe the nature of any age discriminatory practice in the clinical setting through the perceptions and experiences of staff working with older people in East Kent • Provide recommendations for practice

3. Background • Linked to the audit of NSF for Older People Standard 1 ‘Rooting out discrimination’ (DoH 2001) • Initial audit of policy documents highlighted the complexity of age discrimination issues (DoH 2002) • Ageism difficult to combat as based on internalised perceptions, often invisible and unchallenged • Lack of common definition or understanding • Difficult to identify and tackle and no concrete solutions • Recommended series of actions areas including workforce development and ascertaining staff perceptions

4. Literature • Health and social care discussion papers • Rationing by age: for (Williams 1997) and against (Rivlin 1995) • Quality of care and age discrimination (Ellis 2002) • Resuscitation and ageism (Rosenfeld et al 1997) • Empirical research • Ageism in access to specialist services such cardiology (Bowling et al 1999) and transplantation (Varekamp et al 1998) • Exclusion of older people from clinical trials (Bayer 2000) • NHS and social care managers struggle to tackle ageism (Roberts et al 2002)

5. Operational Definitions • Age discrimination happens when someone makes or sees a distinction because of another person’s age and uses this as a basis for prejudice against, or unfair treatment of that person (DoH 2001) • Ageist practice refers to the carrying out of unfair or insensitive treatment because of age (Tinker 1996)

6. Methods – study design • Largely qualitative approach using focus groups design (Morgan 1997, Kitzinger 2000) • Six focus groups conducted across East Kent between October 2002 and March 2003 • Initial interview schedule discussion areas • Access to services • Communication • Attitude • Privacy and dignity • Personal care • Treatment

7. Method - sample • Purposeful recruitment, diversity encouraged • 57 participants • Community 51% (n=29) • Nurses (specialist, DNs, practice and mental health), GPs, GP practice staff, CART and Rapid response • Acute hospital 36% (n=21) • Nurses (specialist, general and mental health), physios, OTs, social workers, administration • Other groups 13% (n=7) • Voluntary services (Red Cross and Age Concern), health promotion, education

8. Methods – data collection • Recent experiences of ageist practice that participants had • Seen or heard in the care setting • Heard via an older service user or carer • Read about in medical notes • Gain consensus views of experiences • Rival explanations • Participant reference sheet (Kitzinger 2000) • Development of discussion tool after first two groups • Recording the discussion - flip chart and notes

9. Discussion Tool • Consensus view of statements of experiences developed after first two focus groups • Three sections • Access to services • Communication and attitude • Treatment and care • Five dimension rating scale ‘often’ to ‘never’ and ‘N/A’ • Addition of two statements - access and clinical trials

10. Data Analysis • Simple descriptive statistics of discussion tool • Content analysis of qualitative data using pre-determined template (Flick 1998) • Access to services • Communication and attitudes • Treatment and care • Additional open-coding system

11. Ethical Issues • NSF Audit framework and service development • Full explanation given • Consent obtained • Confidentiality stressed • Ground rules established • Could withdraw selves or comments at any time

12. Findings – Access to Services • Most statement ‘rarely’ or ‘never’ witnessed • Access to specialist services denied – ‘persuasion’ tactics “Go home and stop worrying about it” (1:p2) – does doctor know best? • Age restriction and competition experienced with access to neurology units and ITU – misunderstood as policy • Perception of low priority that compromises care – medical attention, surgery, phlebotomy • Poor access to mental health beds and no community support team for over 65’s.

13. Findings – Communication and Attitude • More than half witnessed insensitive treatment ‘often’ or ‘sometimes’ - could occur across all age groups but more likely with older people • Inappropriate address • Exclusion of older people from discussions • Some labelling (‘mildly demented’), but improving • All more common among ‘visiting’ staff

14. Communication and Attitudes cont: Information giving • Would not understand or not bothered • Tell relatives first • Too much information frightening, difficulties interpreting information….. ……but more ‘silver surfers’ • Older people do not want to know about their condition • Need to translate information

15. Findings – Treatment and Care • Difficulties addressing sexuality – ‘no sex please, we’re old’, embarrassment, gender issues, professional inexperience • Client involvement in resuscitation – very difficult • Poor assessment, especially client input at joint assessments • Issues of safe medication • Resources – lack of staff related to poor quality of care and choice • Hard to make clear clinical decisions in complex cases

16. The Role of Relatives • Requesting for older person to stay in hospital longer • Questioning the need for treatment “Is it worth it? Can’t you let him be?” (2:p2) • Demanding services, especially at weekends “Weekend relatives syndrome” (6:p3) – judgements become confused with guilt • Seeming to act on the older person’s behalf

17. Discussion • Client centred care • Clinical priorities and standards • The role of relatives

18. Client Centred Care • Engaging older people in their care • The desire, but not the ability (Hamalainen et al 2002) • Care choices not always discussed (Tinker 1995) • Professional ‘take-over’ • Accede to doctors’ decisions and become inactive - ‘doctor knows best’ • Professionals making assumptions – can be caring but often insensitive • Policy perspective (Ham & Alberti 2002) • Historical power imbalance between doctor and patient • New patient involvement policy not internalised

19. Clinical Priorities and Standards • How are priorities decided? • Misunderstood protocols become common practice • Link to resources and rationing (Grimley Evans 1997) • Bowling et al (1992) – ceding your place on the waiting list • A diminishing trend? Baby boomers may rebel! • Making clinical judgements • Difficulties defining clear clinical standards in complex cases, information giving and assessing sexuality • Confusing guidance – resuscitation guidelines ‘openness and transparency, whilst maintaining sensitively and inclusiveness’ (BMA 2001)

20. The Role of the Relatives • Highly emotionally charged situation • Burden of caring (Carer’s UK 2002) • Home care seen as less secure option • Feelings of guilt • Relationship with professionals • Difficulties starting a conversation and getting information (Laitinen & Isola 1996) • Seen as overly demanding or ignored (Henwood 1998) • Competence not recognised (May et al 2001)

21. Conclusion • A wide diversity of issues leading to attachment of ageist label in some circumstances • Complex and inter-related factors; no simple manifestation, so no straightforward answer • Hints of wider societal attitude – need a long term approach • Influencing themes • Expectations and behaviour of older people themselves • Impact of staff attitudes and behaviours – assumptions • Influence of organisational systems – institutional ageism • The circumstances and perceptions of relatives and carers

22. Recommendations – Role of the Commissioners • Clear position on ageism – setting the agenda • Influencing the environment – planning and allocation of services • Communicating clear and explicit values to help shape the service users’ expectations

23. Recommendations – Programme Development • Development and communication of standards and values with users – what should be expected? • Training and education using effective models • Review of organisational systems from client perspective • Review of engagement processes • Lateral learning from parallel situations eg. MacPherson inquiry (Stephen Lawrence) • Piloting and evaluating new developments

24. Limitations • Subjective view based on perceptions, but truly quantifiable consensus could not be reached • Not generalisable, but themes have analytical generalisation and gains credibility through detail and local application • No views from users and carers

25. Centre for Health Services Studies www.kent.ac.uk/chss