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 home-based 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 neighbourswill 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’ whichobscures 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 JusticeBasingstoke: 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