Ethical issues in the use of telecare

Telecare can increase the independence and safety of older and disabled people but professionals should ensure it does not breach service users’ rights as the Social Care Institute for Excellence explains

Telecare is defined by the Department of Health as: “equipment [that] is provided to support the individual in their home and tailored to meet their needs. It can be as simple as the basic community alarm service, able to respond in an emergency and provide regular contact by telephone.”

Telecare generally involves remote monitoring. This can include the use of detectors or monitors which pick up motion or falls, or are sensitive to fire and gas, that trigger a warning to a response centre. It can also include preventative, “life style monitoring” that can give early warnings on well-being.

The Social Care Institute for Excellence’s work on telecare and ethics also covers other technology solutions which might be commissioned alongside a telecare package. These additional solutions include fingerprint recognition door entry systems as part of home security packages, and reminder systems and prompts to take medication.

Ethical concerns

Telecare has great potential to benefit service users. It can help promote confidence and independence, give a person greater control in their daily life, and enable them to continue to live independently in their own home.

By monitoring safety, risk and lifestyle and reminding people to eat or self-medicate, it can free family carers and professionals from some aspects of direct care to provide more social support. It could also reduce the costs of social care provision, and allow more efficient deployment of direct care staff.

The technology involved in telecare services has been used for many years for supporting older people, most commonly in the form of pendant alarms. However, more recently there has been increasing interest in extending the use of telecare services within a wider range of care groups.

These developments raise new ethical concerns around providing telecare services to vulnerable people; particularly people with cognitive impairments.

Scie commissioned a study to identify the ethical issues relating to the commissioning and provision of telecare services and to highlight ways of addressing these issues in practice.

The study identified four important principles that the commissioning and provision of telecare may compromise:

• Autonomy – where people are reliant on professionals or family carers for their care or safety, the introduction of a telecare service has potential either to drastically promote or restrict autonomy.
  
• Beneficence* – telecare has the potential to reduce unwanted dependence on professional staff or family carers and to increase comfort through environmental sensors and controls.
  
• Non-maleficence** – a balance must be achieved between ensuring safety and invading privacy. The stigmatising effect of telecare should be recognised and minimised.
  
• Justice – resource allocation should balance the needs of the individual with those of the wider community and should not disadvantage one group at the expense of another.

Ethical approach

The main ethical concerns can be usefully grouped into two main sections; those relating to the pre-installation phase and those relating to post-installation.

Pre-installation

Assessment is critical to achieving the right balance between independence, social well-being, privacy and protection. It requires appropriately trained assessors to keep assessment of need and assessment for telecare under constant review.

Telecare must be embedded within the care planning process and requires joined-up working between organisations. Everyone involved in the commissioning and use of telecare should have realistic expectations of what it can and cannot do.

Telecare should not be imposed on people and users must give informed consent. The appropriate approach to gaining consent will depend on the individual and their circumstances and care must be taken to present information about possible options.

Judgements about the best interests of people without mental capacity to give informed consent should seek a balance between quality of life outcomes, including independence and safety.

Equipment should be selected that best meets the needs of the individual and offers best value, so commissioners should encourage a competitive market in the tendering process.

Post-installation

Telecare users and their carers should be informed, prior to installation, about what information will be collected and how it will be used. The purpose of collecting data should be to drive improvement and promote people’s independence, as well as their safety. Data should be securely stored and transferred between agencies using industry good practice standards and agreed joint protocols.

There is a potentially isolating effect to telecare and it must not be viewed as an alternative to direct social care or informal support, unless this is the expressed wish of a service user who has full mental capacity.

Telecare cannot monitor changes in people’s well-being with the same sensitivity that human beings can and this should be recognised in care planning. Telecare should be used in combination with direct care and informal support to maximise people’s motivation and support social engagement.

Local commissioning strategies should recognise the potential of telecare for meeting low level support needs.

Conclusion

The work of individual practitioners is often constrained by broader, strategic decisions and national priorities. Nevertheless, practitioners must adhere to ethical principles when considering telecare if they are to ensure that individual users derive maximum benefit from the solutions technology can offer.

Jonathan is tetraplegic, paralysed from the shoulders down. He has been disabled for 22 years, and says he is still alive and sane thanks in part to telecare and other supportive technologies. Jonathan has a variety of telecare that helps him maintain some independence and reduce demand on his full-time carers.

“Assistive technology allows me to control my environment in terms of heat, light; it allows me to choose my entertainment in terms of using the television, radio. I can help my health in that I control the angles that my bed’s at and stuff like that,” he says.

In the night, if he needs to sit up in bed or turn on the fan he doesn’t have to call his carer because he can just do it himself. “Generally it assists my carers to look after me because I can call them when I need them. Otherwise I would be even more of a pain in the neck than I can be even with assistive technology.”

(This case study is taken from SCIE’s Social Care TV film: Telecare – Providing more Personalised Care. )

Practitioners’ messages

• Telecare can improve safety, maximise autonomy and prolong independent living, but it can also threaten privacy, autonomy and control.
  
• Use of telecare raises many important ethical issues that practitioners need to consider when supporting an individual to decide to use telecare, before, during and after installation.
  
• Telecare should only be installed with the user’s fully informed consent, and care should be taken to establish consent, especially where individuals may have impaired mental capacity. Service providers must be clear about the reasons for its use.
  
• Service providers must have robust systems and agreements in place for telecare data collection, storage and sharing.
  
• Effective use of telecare requires multi-agency involvement and investment. Benefits will accrue across health, housing and social care.
  
• Practitioners will need training to support users so they derive maximum benefit from the solutions telecare can offer.

Related articles

At a glance 24: Ethical issues in the use of telecare

Report 30 ‘Ethical issues in the use of telecare’

Social Care TV film: Telecare – Providing more Personalised Care

Social Care TV film: Telecare – The Ethical Debate

GPS dementia tagging

North Yorkshire telecare

Research abstracts

Author BEYER Stephen; PERRY Jonathan; MEEK Andrea

Title A guide to implementing assistive technology for people with learning disabilities

Publisher Bristol: Home Farm Trust, 2009. 50p.

Abstract Handbook for organisations and families on assistive technology and telecare, putting it in context – how and why it should exist alongside existing services – and provides a clear guide to implementation.

Title Telecare: telecare services for older people

Publisher London: Great Britain. Department of Health, 2009. 5p.

Abstract This briefing is aimed at NHS trusts and local authorities to assist in prioritising and effectively commissioning services that support the health, well-being and independence of older people. Includes information about availability of telecare in the UK and links to websites that provide further information.

Author DOUGHTY Kevin; STEELE Chris;

Title The use of telecare and community equipment to improve joint working across health and social care.

Reference Journal of Assistive Technologies, 3(4), December 2009, pp.36-43.

ISSN paper 1754-9450

Abstract This article looks at the potential for extending telecare through integration of services involving alarm services and primary care services.

* Beneficence (the principle that actions should promote the wellbeing of others)

** Non-maleficence (the principle that it is more important not to do harm than to do good)

This article is published in the 13 May 2010 edition of Community Care magazine under the headline Ethical Issues in the use of Telecare