Table 1.

An ethical framework for telecare

This is laid out as a series of questions to be openly considered and deliberated by users, carers, policy makers and professionals: this is not a checklist for ‘yes/no’ answers, but a framework for mature debate and aid to decision making

Design: Who is involved?

Who needs to be consulted, to participate in system design and to decide which needs are going to be met? Telecare should be designed, shaped and trialled through consultation with a broad range of actors. Many older people are ready and willing to participate in these processes: it is up to industry, government and providers to facilitate this activity, in collaboration with established networks of older people. Telecare that is produced without appropriate and meaningful consultation and engagement will not meet the needs of older people

Policy and practice: What problems can telecare help with? How do other problems fit in or not?

Although telecare can be very useful in an emergency situation and has other specific roles, it cannot function as a panacea for problems associated with ageing. There are needs that it cannot recognise or meet. When telecare is designed to enhance (or can be used for) social support, it seems very popular. More often it is used to monitor older people who remain rather passive: if they are more active in using the system for social contact this is seen as ‘misuse’. Telecare systems could be used to promote social relationships that are more horizontal and active rather than vertical and passive

Use and implementation: who is connected to the telecare system?

The installation of a telecare system opens up questions of privacy and confidentiality, highlighting complex issues about the ownership, use and control of personal information and sensor data. The availability of data raises questions about access to it. Information about an older person's activities in their home, or their feelings about their chronic illness, is powerful. The sharing of such information has the potential to change relationships of care: between parents and adult offspring and between paid carers and older people. Some developers recommend the use of telecare to monitor the capacities of older people living alone. It must be made clear to the older person at the point of installation that this might happen

Experience of use: how might a telecare device change an older person's home?

The aim of staying at home should be opened up to question, rather than assumed. Although many older people strongly desire to remain in their own homes as long as possible, this might not be so appealing if ‘home’ is under scrutiny and is the object of constant monitoring. Telecare systems run the risk of turning homes into ‘institutions’. Strong efforts should be made to minimise the disturbance to people's homes: designers, prescribers and installers must take seriously the objections of older people to such intrusions. Telecare devices can diminish people's sense of security despite their aims to do the opposite: they can make people feel vulnerable and scrutinised

Experience of use: who will be the active user of the telecare system: the older person/and others?

Becoming a user of telecare is to take on a new identity and accept a new network of connections in which older people have a particular (and quite limited) set of roles. There are notable differences in older peoples’ experiences of telecare systems where they can maintain physical control (e.g. activate alarms to request help) and those in which alarms are triggered environmentally. The latter lead to more ‘false alarms’, creating difficult work for tele‐operators and others involved in monitoring, and can create unnecessary concerns for older people and their families. Using telecare systems puts older people into new relations both with people they know, or have never met (but may come to know). These changes should be openly discussed with prospective users of telecare

Policy: is it worth the effort?

Telecare involves a lot of work for many different groups and creates new forms of labour, both for providers and so‐called users: it is not necessarily time or cost saving. In most cases, telecare cannot prevent negative incidents: it cannot stop people falling, becoming ill, or getting lost. Its two main functions are to triage assistance and/or enable support. Some telecare systems require a lot of effort from users, who need to log on daily or weekly to answer difficult questions and report on their health. Given that the telecare system is not usually going to prevent negative occurrences, is it really worth the installation and maintenance effort? Potential users and others need to balance the costs of the (material and emotional) labour involved against the benefits of being involved

Politics, choice and flexibility

Sometimes older people receive telecare as part of trials or pilot studies designed to test the acceptability and workability of particular systems. This is often a positive experience for older people, who enjoy being involved in a detailed analysis. Trial results are often positive due to the care and attention this stage of development attracts. Difficult decisions must then be made at the conclusion of such studies: it would be unethical to remove technologies from people who had come to rely on them, without an adequate substitute. Conversely, it is sometimes unclear to older people how they can have telecare removed from their homes. Older people must be able to change their minds about accepting telecare, which itself should be adaptable (open to supplementation/reduction). The prescription and installation of telecare is a complex process. Practical questions of cost to individuals and health services are paramount. In some countries, national policies put pressure on local authorities to commission telecare services, which may then be prescribed to individuals who may not benefit. Families may also pressurise individuals to accept systems they do not actually understand or want. There is a widespread presumption that telecare saves funds by reducing demand for collective living and reducing demand on other care services, but this assumption is simplistic and needs to be carefully scrutinised and analysed

Practice dynamics: what would happen if the older person's condition deteriorated?

Older people's lives can be subject to rapid change: often telecare is prescribed to very vulnerable people who are on the edge of being unable to manage on their own or who have serious chronic disease, with high support needs. Telecare is often installed as a ‘last ditch’ effort to help people stay ‘at home’. The systems themselves, however may be ‘static’, unable to change according to individuals’ needs. Some devices can be reprogrammed (e.g. bed sensors) but this requires ongoing analysis of how the current arrangements are benefiting the ‘users’. In some countries telecare is not well supported, so devices remain unused: either because older people/families do not understand how to use them, or because the device no longer meets the person's needs. Individuals – both professionals and others – need ongoing training about telecare systems so they can use them as effectively as possible