Ethical considerations around telecare

1
Ethical considerations around telecare

• Andrew Eccles
• Universities of Glasgow and Strathclyde

2
Issues under discussion

• Some background definitions of telecare and the
  policy discourse underpinning its application
• Ethical frameworks what is in use, how they are
  interpreted and other approaches that might be
  relevant
• Reports from the front line staff attitudes to
  telecare, use of frameworks and ethical issues
  arising from practice

3
Scottish Government definition

• Telecare usually refers to equipment and
  detectors that provide continuous, automatic and
  remote monitoring of care needs emergencies and
  lifestyle changes.
• Generations
• 2 sensor based lifestyle monitoring (for
  example just checking) / smart houses
• 3 active mobile technology

4
Telecare objectives by 2015

• All new homes, public and private, and all
  refurbished social housing, will be fitted with
  the capacity for care and health services to be
  provided interactively via broadband from day one
  of occupation
• Telehealth will be widely recognised by service
  users and their carers as the route to greater
  independence and quality of life
• Independent evaluation will confirm that no
  care service users in Scotland who could benefit
  from telecare services in a home-based setting
  remain in an institutional environment
• Remote long term condition monitoring undertaken
  from home will be the norm

5
Scotland by comparison

• Telecare in Scotland Benchmarking the Present,
  Embracing the Future (Scottish Government 2008)
  Scotland can consider itself in the vanguard of
  countries progressing to mainstream telecare
• service provision
• A reminder on Griffiths families and neighbours
• will be more needed in future as care support
• demographics family structure

6
The Telecare Development Programme

• Reduce the number of avoidable emergency
  admissions and readmissions to hospital
• Increase the speed of discharge from hospital
  once clinical need is met
• Reduce the use of care homes
• Improve the quality of life of users of
  telecare services
• Reduce the pressure on (informal) carers

7
Telecare Development Programme

• Extend the range of people assisted by telecare
  services in Scotland
• Achieve efficiencies (cash releasing or time
  releasing) from the programme investment in
  telecare
• Support effective procurement to ensure that
  telecare services grow as quickly as possible

8
The ethical dimension

• the need to address an ethical and democratic
  deficit in this field which has arisen due to a
  proliferation in research and development of
  advanced care technologies that has not been
  accompanied by sufficient consideration of their
  social context

Ethical Frameworks for Telecare Technologies
for older people at home (EFORTT)
9
The discourse around telecare

• Demographic change
• Discussion of projections / dependency ratios
• Key Telecare company and partner of Scottish
  government the demographic timebomb
• The language in telecare forums

10

• Tinker (1998) on demographic change the rates
  of change are significant but do not constitute
  the timebomb that is supposed
• Bowling Dieppe (2005) self evaluation versus
  medical evaluation of condition of health most
  older people enjoy good health the target is
  compressed morbidity

11
Ethical framework(s) in use

• Based on four principles (Beauchamp and
  Childress, 2002)
• Beneficence, Non-maleficence, Autonomy, Justice
• (as adopted by the Asrtrid project on dementia
  care)
• This is a limited (essentially biomedical)
  framework yet pervasive in its use across
  discussion around assistive telecare

12
Ethical interpretation

• Sommerville (2003 283)
• interpretation of the terms for example, harm
  and benefit, depends in different contexts on a
  number of variables, including individuals
  perceptions as well as legal and professional
  benchmarks
• Limits to how much a framework can embrace if
  used in assessing

13
Interpretations of beneficence positive and
utility beneficence

• Scottish Government
• we should try to do good to the people we care
  for
• The Care Services Improvement Partnership
• involves finding the balance between risk
  tolerance and risk aversion. There may be a
  dilemma between beneficence and safety
  independence

14
Interpretations of non-maleficence

• Scottish Government
• we should try to avoid doing people harm
• The Care Services Improvement Partnership
• will involve a balance between avoiding harm
  and respecting decisions, dignity, integrity and
  preferences

15
Interpretations of autonomy

• Wilmot (1997) the primacy of autonomy which
• obscures the interdependence of human affairs
• Unwanted autonomy in post Griffiths community
  care
• Where does telecare sit within wider arguments
  around personalisation and direct payments?

16
Independence but isolation?

• Astrid (2001) framework warns of potential for
  isolation in the use of technology
• Lowe (2009) surveys literature linking isolation
  to depression and notes potential attendant costs
  for health care. Will depression be detected? If
  so, will it be dealt with adequately?
• Is a system (for example befrienders) being
  developed in tandem with Telecare at an adequate
  pace?

17
Interpretations of justice

• Scottish Government
• people should be treated fairly and equally
• The Care Services Improvement Partnership
• treating fairly and respecting rights,
  including making eccentric or unwise decisions.

18
Interpretations of justice

• By what measure should people be treated
  equally?
• Would the pursuit of social justice not arguably
  involve an unequal distribution of goods?

19
A social inclusion angle

• Need for telephone landline for telecare
  monitors to work excludes pay as you go
  service users
• Ideally access needed to broadband to monitor
  just checking system by family members
• 3rd generation AT will rely more on mobile
  technology and network capability familiarity
  with, and confidence to negotiate technology

20
Virtue ethics

• Recourse to the moral character of professionals
  in addition to value bases across professions (a
  response to codes of practice)?
• Banks Docherty (2009)
• Whose virtues? Value bases across professions
  (Dalley,1989) Who assesses?

21
An ethic of care

• Ethical decisions are contextual, relational and
  based on reciprocity in which rule based
  decisions are insufficient (but nonetheless set
  the agenda)
• Barnes (2006) the way in which care workers go
  beyond tasks to develop relationships beyond
  contractual obligations care as a moral activity
• Care for people with physical disability as a
  tool through which others are able to dominate
  and manage our lives (Woods in Barnes 2007)

22
LMD evaluation

• Hanson, Osipovic, Percival (2009, 111)
  evaluation of Lifestyle Monitoring Devices
  conclude
• In order to make sense of sensors alongside
  the data provided by the devices, one needs rich
  contextual information that is normally
  accumulated through social interactions between
  caregivers and care receivers, a two-way
  communication process that can best be described
  as a dialogue of care.

23

• Is a checklist bio-medical ethical framework
  adequate for the needs of different telecare user
  groups and are assessors sensitive enough (for
  example to risk) in its interpretation?
• If ethics are contextual, then ought the context
  of older people and people with disabilities be
  subject to the same ethical framework? Does the
  framework have enough latitude for interpretation
  for different groups? If so, how is this being
  applied to assessment for assistive technology?

24
Intuitionism

• (Driver, 2007) intuitionism as an additional
  dimension to ethical frameworks
• Does the delivery of care through remote
  monitoring lead to a shift in ethical
  appreciation of the situation?

25
Some other ethical issues

• From telemedicine the desire for human
  engagement among some medics and patients
• Cultural sensitivity to what extent is the
  biomedical framework culturally transferable for
  example, questions of autonomy and family
  obligation?

26
Research with staff using telecare

• Snapshot research approach
• Information gathering and piloting across three
  sites, interviews across further two
• Semi structured interviews, purposive sample of
  telecare advisors/assessors including Telecare
  partnership leads

27

• Site U Urban
• Site R Rural
• For the purposes of this discussion areas under
  discussion are around ethical questions

28
Findings

• Ethical frameworks based on the biomedical four
  principles at both sites
• Generally agreed across both sites that in
  practice staff will use their professional
  judgement rather than any framework as such
• Interprofessional discrepancies?

29
Interprofessional working

• Assessment
• Health professionals note more unmet need
• Consistency of recording information on shared
  assessment tools

30
Consistency of referrals

• U and R sites operate different approaches to
  gatekeeping the assessment process
• Site U operate gatekeepers from across
  disciplines
• Site R allows assessors to assess without
  further oversight who are the assessors?

31
Social inclusion

• Different policies across Sites U and R about
  underwriting costs of landline installation
• OT (U) people used to using computers at work
  are at an advantage
• SWM (R) Not an issue you can get pay as
  you go Blackberries these days.
• HO (R) of older people telecare a
  non-starter in some cases.they dont need
  broadband they need a generator

32
Addressing potential isolation

• The capacity for volunteering and the
  development of befriending as a corollary to the
  development of telecare was felt to
  underdeveloped across both sites

33
Is the type of care an ethical issue?

• OT(U) not itself technology decisions in the
  best interests of service user
• PM (U) concerns about loss of human
  relationships if telecare was used
  inappropriately
• SW manager (R), Housing Officer (R) telecare is
  superior as it is less intrusive
• Some divide in attitudes between urban and rural
  sites

34
Policy drivers

• OT (U) independence, choice
• SWM (R) fitting in best with what people
  want
• HO (R) choice , demographics
• TPM (UR) finance a key driver

35
Performance indicators

• Reduce the Number of Avoidable Emergency
  Admissions and Readmissions to Hospital
• Hospital bed days saved through telecare
  supported discharge
• Reduce the use of care homes
• Improve quality of life for users of telecare
  services
• Reduce pressure on informal carers

36
Method of evaluating telecare impact

• The evaluation relied on Project Managers or
  other staff working with the telecare users (e.g.
  those undertaking telecare assessments) to
  identify what they thought would otherwise have
  happened to the client at and subsequent to the
  time of issue of their telecare equipment. This
  information was then used to estimate the
  resources that would have been used if the
  telecare equipment had not been provided.
• (Scottish Government, 2009)

37

• Figures drawn from telecare partnerships
• Acknowledged differences in methods of recording
• Project managers on the figures

38
Performance measurement

• Scottish Government categories of telecare
  partnership performance
• Criteria underpinning these unclear to Telecare
  Project Managers
• Telecare packages (supplied by Scottish
  Government partner company) met with resistance
  across both sites

39

• What happens to fulfilling the performance
  indicators if technology is not employed or if
  human care services would be more appropriate in
  the place of telecare at some future point?

40
Scottish Government research with service users

• Independence
• Informal carer anxieties quelled
• If it seems to be working well, dont worry to
  much about the ethics

41
Project managers ethics

• Girling (2007) discusses the argument (Loughlin,
  2002) that in a managerialist world ethical
  reasoning requires the freedom of critical
  thought that is simply not available to managers
• Draws on Aristotles ideas of cleverness and
  practical wisdom that managers in an
  increasingly performance driven culture might
  lack the practical wisdom to reflect on what
  the goals of the health and social care system
  should be in the first place

42

• Clarke, S (2006) drawing on Woolgar (2002)
• The uptake and use of new technologies depend
  crucially on local social context
• How are targets on use to be measured and used?

43

• Are the ethical frameworks in use adequate
  and/or sensitive enough?
• Are frameworks understood and employed within a
  tolerable degree of subjectivity across
  assessment professions?
• Are the policy drivers open to debate and do
  they allow for local telecare partnerships to
  pursue local approaches?
• Is this technology able to contribute to
  outcomes which address social injustice?

44

• Astrid (2000) a social and technological
  response to meeting the needs of individuals with
  dementia and their carers. A guide to using
  technology in dementia care London Hawker
• Barnes, M (2006) Caring and Social Justice
• Basingstoke Palgrave MacMillan
• Beauchamp, L Childress, A F (2001) Principles
  of Biomedical Ethics (5th ed) Oxford Oxford
  University Press
• Clarke, S (2006) From Enlightenment to Risk
  Basingstoke Palgrave
• Hughes, J.C. Baldwin, C. (2006) Ethical Issues
  in dementia care making difficult decisions.
  Bradford dementia group good practice guidelines
  London Jessica Kingsley

45

• Lowe, C (2009)Beyond Telecare the future of
  independent living Journal of Assistive
  Technologies 3(1)
• Loughlin, M (2002) Ethics, management and
  Mythology Abingdon Radcliffe Medical Press
• Hanson J, Osipovic D, Percival J(2009) Making
  Sense of Sensors in Loader, B Hardly, M Keeble
  L (2009) Digital Welfare for the Third Age
  London Rotledge
• J Perry, Beyer, S. and Holm S (2009) Assistive
  Technology, telecare and people with intellectual
  disabilitities ethical considerations Journal of
  Medical Ethics 35

46

• Sommerville, J (2003) Juggling law, ethics and
  intuition practical answers to awkward questions
  Journal of Medical Ethics 29 (281-286)
• Wilmot, S (1997) The Ethics of Community Care
  London Cassell