2. Our "Best Interests" or Theirs?
What makes the matter all the more difficult is that tagging, at first glance, appears a practical means for preventing the potential physical – even life threatening – harm due to wandering in those suffering from dementia. This technology's potential for offering some solace to those whose every minute is filled with fear that a patient under their care – often a loved one – will disappear only to be found dead99 cannot be overlooked. As the British Alzheimer's Society's position paper on the issue (discussed in detail infra) states: "The Society is keen to point out that what is perceived to be 'wandering' is often not problem for the person with dementia"100. Consequently, "[d]ecisions about limiting a person's liberty should remain a matter of ethical concern even when technology finally makes the practical management of wandering easier".101
What is disturbing and requires additional debate – rather than mechanical approval – is that overburdened, under funded caregivers may understandably be tempted to attach greater weight to the technology's potential to alleviate their burden (than to patient's intangible rights) thus giving it the rubber stamp. Understandably, "carers like the idea of electronic tracking devices if these can ensure that the wanderer is found more swiftly"102. Of course, caretakers 'best interests' and those of their patients, though not inseparable, are intimately linked and therefore must be soberly considered103.
3. Beyond Rights。Balance, needless to say, is of the essence104: "mental health professionals have accused attorneys of focusing only on legal rights and ignoring treatment concerns, thus allowing their clients to "rot with their rights on""105. Beyond rights however, arise 'practical' considerations, those relating to a patient's psychological (even physiological) well-being- that too must be proper weighed prior to approving invasive assistive technologies the likes of GPS. Thus, for instance, "For some dementia patients, any diversion from their ordinary routine, even to undergo a procedure that to an ordinary person would seem minor, can 'constitute real threats to needed order and stability, contribute to already high levels of frustration and confusion, or result in a variety of health complications"106.
Ultimately, in the dementia context, Rebecca Dresser argues that "for treatment to be appropriate it must confer a benefit substantial enough to outweigh both its customary risks and the distinctive burdens it holds for the dementia patient unable to fathom its purpose"107. Proportionality is key.In order for such proportionality to be achieved, guidelines must be developed in conjunction with experts in various related fields. Having said this, it is beyond the scope of this initial reflection to offer specific criteria – as such an undertaking would no doubt require a multidisciplinary engagement, destined to study aspects exceeding the purely juridical perspective- insight which this author – a jurist- lacks. Instead, the purpose of this paper is quite simply to call attention to the matter in order to encourage much needed multidisciplinary study of the problem, and ignite the sort of deliberation essential to addressing a complex predicament not limited to juridical analysis. #p#分页标题#e#
Nevertheless, a number of observations of point may be of use. Revisiting the intersection of interests between carers and patients, this technology may have the additional disadvantage of creating a false sense of security amongst care givers, thus potentially fostering greater laxity in care or human surveillance (a tendency to leave it to the machines)108. Some support for this premise may possibly be found in studies, which though unsophisticated, point to decreased alertness accompanying the benefit of decreased stress: "[e]vidence from small unsophisticated studies comparing events or attitudes before and after the installation of boundary alarms shows that such systems are effective and can decrease stress in carers and patients"109.Clearly, these devices are not – nor must they be taken – as foolproof, as illustrated by the following incident: "one patient was injured by a passing vehicle when he had got lost out of range of the device"110.
Finally, while the use of GPS tagging and tracking of Alzheimer patients (and others) suffering from dementia may first appear to curtail costs associated with insurance and liability, if it becomes routine, as noted, caregivers may ultimately be expose to greater such costs if and when they find themselves caring for those competent enough to refuse tagging (either at the time or via advanced directives, as noted below111). Will liability follow those caregivers whose patient (or who themselves) refuse[s] tagging for failing to take this 'reasonable precaution'?112 Taken to the extreme, will those who decline GPS be denied insurance or even care (particularly by managed care facilities seeing profit…)?To address these delicate issues, courageous legislation is in order, which would require the health benefits of assistive technologies to be shown to outweigh other interests – rather than be merely presumed to do so, in accordance with the principle of equality: in the words of Isaiah Berlin: "The assumption is that equality needs no reasons, only inequality does ...; that uniformity, regularity, similarity, symmetry ... need not be specially accounted for, whereas differences, unsystematic behaviour, change in conduct, need explanation and, as a rule, justification. If I have a cake and there are ten persons among whom I wish to divide it, then if I give exactly one tenth to each, this will not ... call for justification; whereas if I depart from this principle of equal division I am expected to produce a special reason"113.Lastly, definitional issues further complicate the matter. Whether electronic tagging is a form of restraint remains to be determined114.
4. Culture of Care: Culture of Rights versus Culture of SafetyAs earlier indicated, the degree of acceptance of certain intrusive assistive technologies is very much a function of a given community's prevalent philosophy or culture of care115. Quite obviously, "ethical systems are an extension of culture, taking their imprint from the ethno cultural systems from which they emerge"116. Hence, a principled approach to health care would be one attaching great weight to rights and inclusiveness117, in contradistinction to one that places expediency – cost, and convenience above other such considerations118 . For our purposes, and in illustration of this point as it relates to assistive technologies and dementia, it may be helpful to briefly compare the U.S.119 and the U.K.'s respective culture of care, as it relates to the readiness to accept GPS monitoring of dementia patients. #p#分页标题#e#
Interestingly and in sharp contrast with both its American and Canadian counterparts120 , the UK's Alzheimer's society has decidedly declined to admit a surveillance programme raising privacy issues (such as "safely home" in the US or "safe return" in Canada) – let alone raise the possibility of GPS assistive technology to families- pending further research into the related ethics- research for which it is actively campaigning121. It has significantly acknowledged the need for serious reflection – rather than automatic acceptance – of these technologies in the dementia context, arguing that: "Technology, which is often used to 'secure' animals122, retail products and prisoners, should not automatically be transferred to people with dementia without full consideration of the ethical issues"123 .
Moreover, this approach explicitly recognizes that the interests of caregivers too are at play, as it does their potential to overtake the debate or tip the balance in terms of tolerating certain intrusive means when these are practical124 , rather than cloaking the issue of assistive technologies in paternalistic rhetoric, aimed at "helping" those most in need125. Therefore, rather than rejecting criticism or even inquiry into the appropriateness of such devices in the dementia context as endangering the lives of patients, the UK society's website directs visitors to articles directly engaging in such questioning126.This reluctance to welcome quick fixes evinces a culture of care that seeks to "sustain the individual's moral personhood as much as possible"127 , even at the expense of convenience or practicality.
In contradistinction, North Americans' above described readiness to welcome assistive technologies, often in want of in-depth ethical debates128, arguably speaks to our desire for expediency or quick fixes to multifaceted issues. American culture has been described as one which places great import on cost and public security129. Electronic surveillance, needless to say, greatly facilitates that task and therefore tends to be more readily accepted, as William G. Staples points out. He submits that we are creating a "culture of surveillance" by allowing devices and processes into our lives that serve to evaluate our conduct and actions and track our every move130.In the same vein, Bruce Jennings observes: "the ethical and legal traditions of the United States pose the ethical dilemma as a conflict of two important principles or values – individual liberty versus prevention of harm to others, or public safety. The United States' tradition seeks a solution to this dilemma in the notion of legitimate or authoritative protection. This involves protection of the individual from harming himself or herself and protection of others, especially those who may find themselves in harm's way. In this stage of Alzheimer's disease there seems little choice but to restrict individual liberty, perhaps quite severely, in order to protect public safety"131. Similarly, in Canada, Danielle Pinard refers to the legal protection of the elderly as corresponding to a "risk management model"132. #p#分页标题#e#
Presumably then, the importance allotted public safety is rivalled only by that attached to cost132. As Robert Koester, neurobiologist at the University of Virginia and perhaps the leading researcher on Alzheimer's-related wandering observes: "When you consider that a search for an Alzheimer's wanderer can cost thousands of dollars, you can understand why law enforcement agencies want to use it"134. As highlighted above, law enforcement may not be the only agency seeking financial relief from the burden of elder-care. Overworked, under funded and often overwhelmed health care workers or family members providing unassisted domiciliary care are in desperate search of some relief. Even more so, for-profit managed care facilities are, needless to say, eager to unearth cost-cutting measures, such as GPS technology, which, by tracking patients saves manpower costs. Plainly put, the twin pillars of cost and safety, underlying the American approach to health care135, risk pointing us to quick fix solutions, whose long term price, as noted, may outweigh its immediate benefits. While the use of assistive technology to forward the legitimate objectives of promoting safety and wisely saving costs should be encouraged, such encouragement should only follow sober reflection and profound cost-benefit analysis (with the word cost and benefit moving beyond financial cost or physical health benefit, as discussed). As Susan Cahill warns, "In dementia we need to move beyond quick fix practical solutions such as electronic tagging, which so often serve the needs of formal caregivers while eroding the rights of those with a cognitive impairment"136 .Perhaps the above-described UK approach, demanding careful reflection prior to acceptance, better comports with a dignity-oriented understanding of patient's rights. This is particularly vital in the Alzheimer's context as "Some of the ethical and legal issues relevant to persons with Alzheimer's disease arise because the cognitive abilities that underlie decisional capacity are disordered by the disease, but many patients, especially those at an early stage of the disease, have intact or only partially impaired decisional capacity"137 .
It further accords with the Conservator model, an approach to health care that attaches greater import to patient rights, advocated by leading British Alzheimer specialist Tom Kitwood138. The Conservator Model, grounded in ethics139 and placing personhood and dignity above expediency140, is one that our legislators might consider for future formulation of health care policy: "[t]he caregiving associated with the conservator model involves much more than the bed and body work that is often taken to be the sum total of care in a nursing or home care context. Care is given to the body, to be sure. But its primary object is the person, the subject, the self as an active being in the world of meaning and relationships with others. In the conservator model there is also a primary duty to sustain the individual's moral personhood as much as possible. The basic idea here is that maintaining, sustaining, and creating relationships-connections and commitments-with the moral person is itself a duty of ethical responsibility for other individuals in the moral person's environment"141.In Ethicist Steven Sabat's words: "…it offers an alternative approach to limiting the liberty and managing the risky behavior of patients with Alzheimer's disease. It does so within the context of a general strategy and conception of caregiving rather than on the basis of a duty to protect third parties, the community as a whole, or individuals who are incapable of protecting themselves. As a caregiving orientation this model has three basic elements: preserving the integrity of the demented person, sustaining functional capacity, and relieving suffering"142. #p#分页标题#e#