Assistive technologies ethical issues and ethical research Andrew

Assistive technologies: ethical issues and ethical research Andrew Eccles University of Strathclyde

Ethical framework(s) in common telecare use Care Services Improvement Partnership Social Care Institute for Excellence Scottish Government Based on four principles (Beauchamp and Childress, 2001) Beneficence, Non-maleficence, Autonomy, Justice This is a limited (essentially biomedical) framework yet pervasive in its use across discussion around 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

• The appropriateness of biomedical frameworks; acute dilemmas or life affirming care? • The common understanding of these frameworks across professions ‘[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’ (Mort M, Roberts C, Milligan C, 2009)

The ‘primacy of autonomy’ (Wilmot, 1997) How are these perceived across professions and/or different sites? Cultural sensitivity to care needs: Tao and Driver (1997) on autonomy in different contexts If we go beyond the ethical frameworks what ethical issues emerge?

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 and on whose budget? Is a system (for example ‘befrienders’) being developed in tandem with Telecare at an adequate pace?

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

• Barnes (2008) on the limitations of ethical frameworks • The merits of relational ethics • The need for contextual ethics • The need to examine intuitional ethics in the context of remote decision making

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 (and the impact of change to circumstances of care) Care for people (for example with physical disability) as a tool through which others are able to dominate and manage lives (Barnes 2007).

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 Telecare technologies?

Care as a moral activity (Tronto, 1993) Attentiveness: Responsibility: Competence: Responsiveness: to recognise and be attentive to others to take responsibility for action caring work should be competently performed consider the position of the carereceiver from their perspective – it is only possible to know if caring needs have been met by focussing on the experience of receiving care

• Connectivity and access to connectivity: a social justice perspective • Care workers and a reciprocity of care • The potential for isolation and depression

• Contextual angle • An ethic of care versus an ethic of justice in telecare application • The impact of remote care delivery in decision making

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’.

Virtue ethics Recourse to the moral character of professionals in addition to value bases across professions Banks & Docherty (2009) Whose virtues? Value bases across professions? ) Who assesses?

Recourse to the moral character of professionals in addition to value bases across professions Banks & Docherty (2009) Whose virtues? Value bases across professions? Who assesses? Who gatekeeps the assessment?

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?

Performance indicators Reduce the Number of Avoidable Emergency Admissions and Readmissions to 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

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 concern across sites A and B

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 Telecare technologies?

• The performance indicator framework and ethical deliberations • The unethical attractions of meeting the performance indicators • Practical wisdom in a performance indicator world • Context and justice: should all user groups be subject to the same performance criteria?

• Research with front line staff (n= 15) assessing for telecare and telecare project managers (n=3) • Three sites, urban/rural mix, purposive sample across social work and health settings, semi- structured interviews • Policy drivers • Ethical codes (and the virtuous practitioner) • Ethical issues as part of telecare training

Different responses from front line staff from based on and the approaches of assessors to human care / telecare Depends on circumstances Technology less intrusive Human care has ‘got to be better’ Resistance to use based on employment considerations

Some issues for discussion • What ethical issues are raised when the choice is telecare or no care? • Are the ethical issues raised by this potentially being the only type of care available better accommodated by a biomedical ethical framework than an ethic of care?

What happens to fulfilling the performance indicators if technology is not employed? If human care services would be more appropriate in the place of telecare at some future point is there a contingent workforce when Telecare technology is no longer appropriate?

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