Transcript Some ethical considerations around assistive technology

Ethical considerations around
telecare
Andrew Eccles
Universities of Glasgow
and Strathclyde
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
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
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 homebased setting remain in an institutional environment
Remote long term condition monitoring undertaken from home
will be the norm
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
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
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
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)
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
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
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
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
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’
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’
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?
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?
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’.
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?
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
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?
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)
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’.
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?
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?
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?
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’
Site U
Urban
Site R
Rural
For the purposes of this discussion areas under
discussion are around ethical questions
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?
Interprofessional working
Assessment
Health professionals note more unmet need
Consistency of recording information on shared
assessment tools
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?
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 don’t need broadband
they need a generator’
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
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
Policy drivers
OT (U)
independence, choice
SWM (R)
fitting in best with what people
want
HO (R)
choice , demographics
TPM (U&R)
finance a key driver
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
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)
Figures drawn from telecare ‘partnerships’
Acknowledged differences in methods of
recording
Project managers on the figures
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
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?
Scottish Government research with
service users
Independence
Informal carer anxieties quelled
‘If it seems to be working well, don’t worry to much
about the ethics’
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 Aristotle’s 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
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?
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?
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
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
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