Ethical Considerations in Electronic Monitoring of the Cognitively Impaired

For Whose Benefit?

Assistive tracking technologies require striking a balance among competing values at the intersection of physical safety and personal liberty^5,13,14 (Table 2). Used effectively, the additional safeguards provided by remote monitoring can allow individuals freedom to travel within a prescribed area, thereby mitigating the need to restrict movement via direct supervision or physical restraints. The inherent nature of remote surveillance threatens to offend dignity and erode privacy. The devices may be liable to overuse as a replacement for human contact.

The preferences of family caretakers are an important consideration, given the tremendous sacrifices and burdens in caring for cognitively impaired individuals.^15,25 While the vast majority of such caretakers operate according to the best interests of their loved ones, they tend to define those interests primarily in terms of physical protection.^11,13

Some data contradict the notion that electronic care surveillance necessarily sacrifices liberty for safety. In 1 Swedish study, 16 of 17 seniors perceived such surveillance as positively affecting their ability to live independently, which in turn actually enhanced their sense of privacy.²⁶ The seniors selected for that study, ranging from 68 to 96 years old, were living alone and capable of being interviewed, but they also were sufficiently vulnerable to health risks to have previously been provided with manually activated safety alarms.²⁶ These findings provide a useful reminder that the intrusions of electronic tracking must be assessed in light of other, potentially more restrictive options for protecting the cognitively impaired.²⁷ In “allowing the wanderer to wander,” surveillance technologies may empower individuals with dementia by accommodating rather than restricting their behavior.¹⁹

A Necessary Trade-off?

The Universal Declaration of Human Rights enshrines both privacy and freedom of movement as fundamental rights.¹⁶ Cognitively impaired individuals represent a vulnerable population whose rights must be protected along with their safety, especially in the context of determining how to use progressive technologies. Electronic surveillance issues in the United States have largely been adjudicated in the criminal context, focusing on the constitutional right to be free from arbitrary government intrusions, not from private encroachments.²⁸ Technology has compelled the evolution of constitutional doctrine by facilitating the pervasiveness of government surveillance. Reasonable expectations of privacy²⁹ may diminish as the public accepts trade-offs for convenience; alternatively, new technological encroachments may necessitate expanding traditional safeguards.³⁰

In the context of care for the cognitively impaired, private litigation over location monitoring remains unlikely because of the high level of support among afflicted individuals' family members.¹¹ Familial caretakers are often more enthusiastic about the technology than health care professionals.¹⁵ Families tend to support the use of electronic tracking most strongly when they are directly responsible for their loved ones' care.¹³ The management of wandering requires an appraisal of risk tolerance among stakeholders, including patients, families, and the caregiving team.²³

It is not always clear-cut whether the safety benefits of surveillance outweigh the risks to personal liberty.¹⁷ Additional research could shed light on the experiences of both caregivers and cognitively impaired individuals with electronic tracking.¹⁵ Determining the extent to which patients' and caregivers' preferences align can inform the debate over whether location monitoring requires a trade-off of privacy for security, or whether it can be squared with the liberty interests of cognitively impaired individuals on a stand-alone basis. To date, the dominance of the discussion by professional commentators risks overlooking the “actual experience of usage” by both patients and carers, thereby skewing the analysis toward presumed tension even where the effects of electronic tracking may be perceived as mutually beneficial by all parties.¹⁵ The “experience-distorting technical language” often used to describe family caregiving should not obscure the “close experiential language of actually doing it.”³¹

Beyond Decisional Capacity

Providing medical informed consent requires capacity, or the ability to comprehend information and communicate clear preferences about proposed courses of action.³² A central challenge of caring for cognitively impaired individuals is that the legal framework defines capacity at any point in time as either “present” or “absent.” Compromised and fluctuating capacity does not fit neatly into this dichotomous construct, with patient choice at 1 end and proxy decision making on the other.¹⁵ Individuals whose wandering behavior necessitates electronic monitoring are likely to be experiencing moderate to severe cognitive impairment that situates them squarely in this nebulous zone. Borderline and variable capacity in neurodegenerative dementias underscores the importance of approaching the affected individual at the right time and in the right way in order to maximize the potential for meaningful engagement.²⁰

In the absence of advance planning documents wherein the individual made choices before their capacity deteriorated, surrogate decision-makers are often left to navigate the terrain of deciphering what the individual would have wanted (substituted judgment) or deciding what is in the individual's best interests.³³ A joint decision-making model that seeks and accords weight to the input of individuals with cognitive impairment can help bridge the gap between situations where capacity is variable and diminished, and the onset of consistent need for proxy decision making.^15,20

Cases where the patient readily can and does provide informed consent to electronic surveillance are straightforward but may be atypical.¹⁵ Irrespective of whether the cognitively impaired individual has been legally declared incompetent or clinically deemed incapacitated, their input into health care decisions should be maximized through active physician-patient collaboration. People with compromised decisional capacity can retain the capacity to express values, preferences, and goals.²⁴ In fostering this dialog, physicians balance the ethical principles of beneficence and respect for persons, which incorporates autonomy.²¹ An incompetent or incapacitated patient's rejection of electronic tracking may justifiably yield to competing priorities, including safety, appropriate care, and the feasible burden on caregivers.³⁴ Deception is usually inappropriate.¹⁸

A key principle animating decisions about the use of electronic tracking tools for cognitively impaired persons is to recognize that autonomy encompasses more than decisional capacity, and does not cease to matter as capacity wanes. When physicians speak of patient autonomy, they tend to mean both the capacity to make independent choices and the values and beliefs that make individuals who they are.³⁵ As the former deteriorates, protective interventions (such as assistive technologies) may prove necessary to keep individuals safe. The latter retains its ethical force across the capacity continuum.

Translated into clinical guidance, the persistence of patient autonomy means that the tenets of patient-centered care remain relevant even when the lucidity of the individual is compromised. Properly balancing safety and autonomy includes soliciting the engagement of the cognitively impaired individual in discussions around electronic tracking, even when obtaining informed consent is not possible. When patients and families are considering the use of surveillance tools, certain key principles can help physicians act as educators and advocates for cognitively impaired individuals (Table 2).