In the aftermath of the tragic and preventable death of 83-year-old dementia sufferer Carmelo Fino, who left St Vincent de Paul Residence in the middle of the night unobserved, there has been much debate about how best to ensure patient safety and security.
The discussion in Malta reflects a broader international debate around what is often termed ‘assistive technology’ and its role and ability to enhance the life of patients, and the duty of care of institutions and the state.
Should patients such as Fino be ‘tagged’ with an electronic tracking device as argued by Active Ageing Minister Jo Etienne Abela and others?
The question is part of a larger discussion on how best to ensure the safety of people with Dementia or Alzheimer’s (both on the increase worldwide) while respecting their dignity and their rights.
Apart from ‘tagging’ per se, the debate also focuses on ‘restraints’ (physical and/or chemical) and the use of barriers to wandering, such as locked doors or ‘closed’ wards.
In the public mind, the phrase ‘tagging’ continues to be linked with criminals and animals and, as such, is an emotive issue guaranteed to raise opposing viewpoints as has been the case here.
Those opposed to such devices argue they are demeaning, frequently intrusive, are an affront to human dignity, and should not be widely used. They point to questions of data collection and monitoring and the control of same; to the issue of consent and how it can be effectively satisfied; and to the danger that tagging devices will become an easy alternative to providing effective care.
Those arguing for their use (including families of sufferers) insist that there are legitimate circumstances in which they should be widely available so that families and carers might more easily trace them as needed. Such devices routinely include a geographical ‘fencing’ feature, creating a perimeter for a person with dementia: if the wearer goes beyond the limits set, the device will activate, hence their labelling as ‘safe walking’.
Available data suggests that around 60 per cent of affected patients routinely wander off alone and unnoticed, with some 40 per cent becoming lost. In many cases, they have suffered serious accident and sometimes death. In almost all cases, this causes distress for all.
The older, bracelet-style devices associated with the criminal justice system are rapidly becoming outdated, and the newer more discreet devices can be inserted into a mobile phone, a necklace or a wallet. When used properly and appropriately, tagging can be a helpful, life-enhancing and a positive thing. In such a context, there should be no irresolvable difficulty with this technology if handled professionally and humanely.
As the internal enquiry into the death of Carmelo Fino found, there were significant failures of management and staffing systems at St Vincent de Paul. Debate continues as to where the ultimate blame for this effectively lies. Technology cannot overcome such human or system failures, yet it must become an important element in any future vision of patient care and safety.
The human dignity, legal and data protection issues associated with tagging can be overcome with goodwill and application by all parties involved. The vexed question of patient consent (most particularly in the latter stages of dementia) can also be resolved, especially with the participation of family members, carers and legal guardians.
Where consent is not forthcoming, the decision of the patient and family must be respected with all necessary disclaimers, etc. The decision is ultimately one that needs to be made by families in the best interest of their loved ones.
As has been highlighted in the debate in Malta, given the nature and significance of the issues involved, careful and considered (and primarily patient-focused) discussion is needed at all levels.