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This research paper will discuss the historical developments, legal policies, and ethics related to advance directives. The historical and political information discussed is mostly based on cases from the USA and Benelux countries (Belgium, the Netherlands, and Luxembourg). The development of the US legal system is particularly important, due to its elaboration and inﬂuences on other countries. The Benelux countries also deserve special mention, due to their recent legalization of active euthanasia and the use of advance directives as a means to request it. The second half of this research paper will discuss moral issues that relate to advance directives. Though the binding authorities of advance directives are strongly supported by the values of self-determination and the best interests of the individual, various objections to such binding authority will be addressed. Some objections point to the prevalence of practical obstacles that hamper the realization of these two values through the use of advance directives. Other objections emphasize the need for balancing these supporting values against other values that could prevent the absolute authority of advance directives from being realized.
Advance directives are documented medical preferences that competent individuals prepare for when they become incompetent. When a directive speciﬁes the individual’s preferred treatment options, it is called a “living will.” A directive may also be used to designate a surrogate, in which case it is called a “durable power of attorney.” Early developments that shaped the current general features of advance directives, as well as the rules concerning their use, occurred largely within the United States (US) legal system in the 1970s. Successive court decisions and law enactments at both state and federal levels in the USA recognized the rights of competent individuals to use written directives to refuse future treatment options if they become incapacitated. The present research paper thus begins with a brief historical review of US laws on this issue. Developments in other parts of the world will be discussed later in this section, to illustrate variations in the understanding and use of advance directives. One particularly important variation is seen within regions in which “active euthanasia” has become legal in recent years. Laws in some of these regions allow individuals to draft advance directives that request injection of a lethal drug to hasten one’s death, as opposed to requesting termination of life-sustaining treatment. The advance directive regulations of the Netherlands and Belgium will be discussed in some length for illustration.
The later sections of this research paper will explore the ethical dimensions of advance directives. The main focus of the current debate on this issue is the question of whether advance directives should be endowed with absolute binding authority. Granting a binding force to advance directives and thereby allowing individuals to make decisions regarding their future treatment is widely considered to be morally desirable because it allows individual self-determination and promotes the best interests of the individual. However, the objections that have been voiced against granting authoritative status to advance directives will be discussed in the later sections. One group of objections points to various pragmatic difﬁculties associated with the effective implementation of advance directives and promotion of the two aforementioned values. Other objections note that other values may conﬂict with the two discussed values, implying that patient self-determination should not always be the main priority. This survey ends with a discussion of the controversy that revolves around situations in which people use advance directives to request a hastened death if they develop a serious mental impairment. Should these individuals later develop dementia, their previously exercised self-determination and their contemporaneous best interests (the very two values that advance directives are intended to promote) may conﬂict with each other.
History And Development
Legal Developments In The USA
In the USA, two landmark court cases on end-of life issues occurred during the 1970s and 1980s: the Quinlan case (1976) and the Cruzan case (1990). Both cases involved a young woman who was kept alive in a persistent vegetative state. The families of these young women requested that treatment be terminated, but the attending physicians in both cases insisted on continuing care. The courts eventually ruled in favor of the families, allowing them to make the ﬁnal decisions. These and several other cases have promoted the idea that patients have the right to refuse unwanted medical treatment, even if it results in death. This idea has since gained wide acceptance in both legal and ethical settings.
The US Supreme Court ruling in the Cruzan case (1990) that the Constitution recognizes a patient’s right to decline treatment and that life-sustaining treatment can be removed from an incapacitated patient if there is clear and convincing evidence the patient had desired it is particularly important. This court decision is considered to guarantee the constitutionality of advance directive statutes, by virtue of which medical practitioners are immune from legal sanctions if they hasten death by implementing a patient’s advance directives in good faith.
To be more speciﬁc, advance directive statutes are divided into two types: living will statutes and durable power of attorney statutes. Living will statutes allow individuals to provide speciﬁc instructions on which treatment options they wish to receive or forgo. Durable power of attorney statutes allow individuals to designate a surrogate decision-maker, in case they should become incompetent. Currently, living will statutes have been enacted by all 50 states. These statutes typically specify the conditions under which the individual’s instructions become effective. For example, California’s Natural Death Act, the nation’s ﬁrst living will legislation, includes the following requirements: that the patient be 18 years of age or older and of sound mind when signing the document, that two physicians certify that the patient is either terminally ill or permanently unconscious, and that the patient be too incompetent to make decisions. It should be noted that many of these statutes, or standard formats created in conjunction with various state legislations, maintain that the instructions be activated only if the patient becomes terminally ill. Several examples also set limits on the types of treatment a patient can decline. By contrast, benchmark US court decisions on this issue, such as the Cruzan, Quinlan (1976), and Bouvia (1986) cases, clearly state that a patient need not be terminally ill in order to decline life-sustaining treatment. These decisions also agree that a patient may refuse any treatment, including artiﬁcial nutrition and hydration.
Each state also has a durable power of attorney statute, which allows an individual to name a surrogate decision-maker, in case they should become incompetent. These statutes were originally intended to apply to assist with decisions regarding ﬁnancial matters, but no court has denied that these laws should also apply to the designation of healthcare proxies. Some states, including New York and Massachusetts, have an additional durable power of attorney statute that speciﬁcally applies to healthcare issues (Annas 1991).
A durable power of attorney statute typically provides the two following sets of standards for the designated proxy to follow when making decisions for an incompetent patient: the substituted judgment standard and the best interest standard. Substituted judgment requires that a proxy make decisions based on the patient’s wishes and beliefs pertaining to the present situation. Since the incompetent patient’s wishes or beliefs are often not speciﬁcally known, the proxy must make decisions based on conjecture as to what the patient, as a person still possessing an individual pattern of desires, would have chosen if they had been capable. The best interest standard is generally understood to apply when a patient’s wishes or beliefs pertaining to the present situation are completely unknown. In such cases, the proxy must make decisions that they believe will best promote the interests of the patient.
These advance directive statutes, which were initially created independently in each state, were buttressed at the federal level in 1990 through the passage of the Patient Self-Determination Act (PSDA) by the US Congress. The PSDA targets all US healthcare institutions that accept Medicare patients with the aim of securing the right of patients to make their own medical decisions, including the right to draft a living will and durable power of attorney. The institutions are obliged to notify the patients of their right to draft advance directives, to set a policy for keeping records of patients’ directives, and to educate their staff and local citizens about advance directives.
Advance Directives In Other Countries And International Regions
The established legal status held by advance directives in the USA is a rare exception in comparison with the other parts of the world. Recent comparative studies suggest that advance directives either have no role or unstable legal status, within the health practices of most countries and regions around the world. Countries in which advance directives are reported to have no legal basis include Brazil, China, India, Kenya, and Turkey (Blank 2011). (Bioethics, vol. 24, no. 3, 2010, contains a special collection of six papers under the title of “Advance Directives from a Cross-Cultural Perspective.” Blank and Merrick (2005) also contains 14 articles on this topic. See also Blank (2011) for a useful, concise summary of the topic and updates.)
In some nations, though there are no formal laws recognizing their authority, advance directives may nonetheless have a binding force in practice. This is due to the fact that their validity is underscored by guidelines issued by each nation’s healthcare authorities. Various government and professional bodies in Japan, including the Ministry of Health, Labor, and Welfare, the Japanese Medical Association, the All Japan Hospital Association, and various other academic medical associations, successively and independently published guidelines on the ethics of terminal care in the late 2000s. The disparate guidelines published by these organizations all agree that some life-sustaining treatments can be withdrawn or refused for terminally ill patients and that medical practitioners should honor the wishes of an incompetent patient who has previously expressed the wish to refuse treatment. The Korean Medical Association’s guidelines on withdrawing life-sustaining treatments, published in 2001, similarly bestow advance directives with some binding force in South Korea (Kim et al. 2010).
Legal systems in a handful of countries and regions outside the USA recognize advance directives, including Western European countries such as Austria, Germany, and the United Kingdom. Along with Western Europe and North America, Taiwan enacted a Natural Death Act in 2000, which allows terminally ill patients to create a living will and durable power of attorney (Blank and Merrick 2005). While the contents of the laws in these countries are more or less the same as those within the USA, a notable exception is an Austrian law that distinguishes between the two types of advance directives with different levels of compliance. Medical practitioners are obliged to honor only what is called a “binding advance directive”; to create this document, patients are required to obtain a physician’s advice and notarization, which can cost a considerable amount of money. The other option, called a “nonbinding advance directive,” requires no advice or acknowledgment, but requests that the instructions are given due respect. Binding advance directives expire after 5 years, at which point the document becomes a nonbinding directive. For renewal of the binding advance directive, a patient would need to seek the same medical and legal advice again (Schaden et al. 2010).
Advance Directives In Countries With Legal Active Euthanasia
During the 2000s, the Netherlands (2002), Belgium (2002), and Luxembourg (2009) successively legalized what is called “active euthanasia,” i.e., injection of a lethal drug by a physician to hasten a patient’s death. These developments allow a new option regarding the use of advance directives, which patients can now use to request not just termination of life-sustaining treatment but also injection of lethal drugs. (For reference, the recent legislation in these three countries also addresses physician-assisted suicide, whereby physicians may prescribe, rather than inject, lethal drugs to enable patients to take these drugs at the desired time. Physician-assisted suicide is also legal in the US states of Oregon and Washington (since 1997 and 2009, respectively.) However, since the latter fashion of assisting death assumes patients to be competent at the time that they are prescribed, or actually take, the lethal drug, advance directives are theoretically of no use in these situations.)
Active euthanasia has been decriminalized and widely practiced in the Netherlands since the 1980s, following several landmark court cases. Most notable of these cases is the Wertheim case (1981), in which a euthanasia activist assisted the death of a 67-year-old female patient with mental and physical ailments by feeding her a lethal dose of Vesparax tablets mixed with chocolate custard. Although the defendant was eventually found guilty of violating a law prohibiting suicide assistance, the District Court of Rotterdam included in their ruling a list of requirements that physicians must meet in order to avoid being found guilty. However, the early guidelines based on this and other similar court decisions, or created by various bodies and associations, demanded that the patient be competent and desire death until the very moment that active euthanasia is performed. Legislation in 2002 explicitly recognized active euthanasia by advance directive for the ﬁrst time. Competent patients aged 16 years or older are allowed to draft written requests for hastened death by lethal injection if they should become incompetent.
While Dutch law speciﬁes no formal requirements or period of expiration for such requests, Belgian law contains speciﬁc rules about how such requests should be created, validated, and honored. This law demands that two adult witnesses be present when advance directives are drafted and that one of them has no material interest in the patient’s death. All directives must be dated and signed by the competent author and the witnesses. Similar to the Austrian laws on binding advance directives for termination of treatment, the Belgian advance directives for active euthanasia expire in 5 years. A patient can also use his or her advance directives to designate one or more people who may inform the attending doctor of the patient’s wishes (Grifﬁths et al. 2008).
Another important difference between Dutch and Belgian legislations is the designation of requirements concerning patients’ health conditions at the time of lethal injection. Under the Dutch law, the same requirements should apply to both patients who are competent when receiving active euthanasia and patients who are incompetent and for whom active euthanasia is carried out in accordance with their advance directives. This means, among other things, that the patient is experiencing “unbearable suffering,” which many question whether patients who are currently incompetent are capable of experiencing. In contrast, the Belgian law speciﬁes a different set of conditions for incompetent patients. “Unbearable suffering” is not included in these conditions, but it is required that the patient be both incurably ill and irreversibly unconscious (Grifﬁths et al. 2008).
Conceptual Clarification And Definitions
Advance directives can be deﬁned as statements conceived by competent individuals to express their medical preferences in the event that they become incompetent. There are two main types of advance directives. One, called a “living will,” provides speciﬁc instructions on which treatment options the individual wishes to receive or forgo. The other, called a “durable power of attorney,” designates a surrogate decision-maker in case the individual is declared incompetent. Advance directives may contain both speciﬁc instructions about treatment options and designation of a surrogate.
The Moral Basis Of Advance Directives
Two moral considerations strongly support the claim that patients’ advance directives should be honored. In many industrialized societies, there is an evolving consensus that competent patients should retain the right to choose their medical treatment. Individual self-determination is highly valued on its own and is also considered to have a great instrumental value in promoting the best interests of the individual. This value is based on people’s tendency to judge best their own needs and to be very careful when making decisions for themselves. This same pair of values, individual self-determination and best interest, supports the binding authority of advance directives. If the ability of patients to make decisions regarding contemporaneous medical treatment promotes their self-determination and their best interests, then allowing them to make decisions regarding future treatment should apparently have the same effects (Buchanan and Brock 1990).
Pragmatic Concerns Regarding Effective Implementation of Advance Directives
The absolute binding authority of advance directives, however, has detractors. One group of objections points to the various pragmatic difﬁculties involved with the effective implementation of advance directives and promotion of self-determination and individual best interests.
A number of pragmatic concerns have been raised in relation to the effective implementation of living wills. In order for a living will to promote a patient’s self-determination and best interests, there are many preliminary requirements. Above all else, the individual must have adequate knowledge of the living will and must sign the form. Secondly, a patient’s wishes must be accurately reﬂected in their living will instructions. Finally, medical providers and family members must know about the living will documents and honor them when patients become incompetent. Anecdotal evidence suggests that all of these conditions are seldom met.
Even in the USA, where substantial efforts have been made to implement educational programs for decades, most people still lack advance directives. This oversight may not be simply due to people’s ignorance; rather, many people may ﬁnd it unpleasant to contemplate their own deaths. Most currently available advance directive standard formats are written with a language that is too difﬁcult for the average person to comprehend, which may also contribute to the low adoption rate of advance directives (Otto and Hardie 1997).
Even if a person creates a living will, it may not accurately reﬂect their preferences :. Drafting a living will requires that the individual have some sense of what a critical illness would be like. In particular, one would need to be able to predict the treatment options and preferences : relevant to any possible medical situation. This speculation, however, is exceedingly difﬁcult for lay people to contemplate, particularly those who are young and healthy. Additionally, people’s preferences : may change over time. Even if an individual had conﬁdence in the accuracy of their living will instructions when they initially drafted it, their preferences : may be completely different by the time they become incompetent. In addition, empirical evidence suggests that most of those who have signed living will forms do not have the document with them when a relevant medical situation arises. Many actually receive treatments that are inconsistent with their living will instructions (Fagerlin and Schneider 2004).
A more important pragmatic concern that has been discussed by many critics pertains to the interpretation of living will instructions. A living will is often drafted with broad terms. For example, one may refuse to receive any life-sustaining treatment when a meaningful quality of life can no longer be expected. Implementing this instruction, however, requires interpretation of what exactly is meant by “life-sustaining treatment” and “meaningful quality of life.” Depending on who reads the living will instructions, the interpretation of patients’ wishes may be different, and the individual may receive more or less treatment than they actually desired.
It may seem that some of these living will issues do not apply to durable power of attorney. The purpose of designating a durable power of attorney is to assign a proxy, so the preparation of these directives does not require precise predictions regarding individual preferences for particular treatment options. Additionally, the appointment of a speciﬁc person is relatively unambiguous, and interpretation problems may therefore seem unlikely. However, a closer look reveals that durable power of attorney directives face many of the same challenges as living wills. There are two standards that may be used to guide proxy decision-making, both of which invite difﬁculties. First, the substituted judgment standard requires that the proxy make decisions based on what they believe the incompetent patient would want. This requires the ability to discern what the patient’s individual values would dictate as the treatment choice for the concrete medical problem at hand. The interpretation issue thus resurfaces, albeit in a slightly different form than that of living wills. The best interest standard fares no better. A proxy is not likely to be able to identify an incompetent patient’s best interests, particularly if the patient’s preferences and values are unknown. Some best interest standards maintain that the proxy should make a decision that an average, rational person would make if they were fully informed. However, understanding what an average, rational person would prefer in a concrete situation relies on ambiguous interpretation.
These facts and considerations have led some commentators to believe that advance directives should be granted less authority than a competent patient’s treatment decisions. It has been claimed that when there are serious doubts about the accuracy of advance directives in representing the patient’s real preferences , medical providers should be able to override the directives, either on paternalistic grounds or to serve the interests of others (e.g., a distressed family who wants the patient to live longer despite the patient’s expressed wishes) (Brock 1991). Especially in the USA, some believe that the enormous ﬁnancial costs involved in the promotion of advance directives to the public under the PSDA are unjustiﬁable, given that advance directives have been seldom proven effective (Fagerlin and Schneider 2004).
However, there are also reasons to believe that these pragmatic difﬁculties are relatively surmountable. Efforts have been made to create a standard living will format that utilizes plain and precise terminology to eliminate, or at least reduce, the room for interpretation (Emanuel and Emanuel 1989). This format could also juxtapose various treatment options with a list of situations that critically ill and incapacitated patients often face, so that one could simply cross out treatment options that they do not wish to undergo. Educational programs encouraging people to discuss their medical preferences with family or close friends while they are still competent could also help to overcome interpretation inconsistencies.
Recent studies indicate a shift in empirical trends related to the implementation of advance directives. Previous reports uniformly determined that the majority of Americans had not completed an advance directive form. However, one interpretation of these results suggests that selection bias was present due to the exclusive focus on patients who died in acute care hospital settings. A more recent, nationwide study was conducted in 2000, including data from 1,587 patient deaths in a variety of medical settings in 25 states. This survey revealed that over 70 % of patients who died that year had completed one of the two types of advance directives while still competent (Teno et al. 2007). The results of another study, published in 2010, showed that the majority of patients who completed advance directives received treatment consistent with their preferences ; 83 % of those who requested limited treatment and 97 % of those who asked for comfort care received their treatment of choice (Silveira et al. 2010). Researchers conducting these studies in the USA believe there has been a great increase in the use of advance directives in recent years and that both the patients’ families and medical providers have started to acknowledge their value. These ﬁndings, combined with efforts to create more readable and unambiguous formats, point toward the possibility that advance directives will reﬂect self-determination and the individual best interests of a large number of patients.
Finally, it is also worth noting that some of the pragmatic difﬁculties so far enumerated may be ampliﬁed in various legal, political, and cultural contexts that are more prevalent in some countries and regions. As described above, advance directives are not endowed with any binding force by laws in most parts of the world. Such legal situations certainly discourage individuals from preparing advance directives, and it is less likely that they are honored even when prepared in such contexts. Cultural factors can also have a similar effect. In Japan, for example, the authority of physicians is seldom questioned by patients, and their family members can play a larger role in making treatment decisions. In fact, the rate of revealing a diagnosis to patients remains low when the condition is incurable. In such cultural contexts, it is more difﬁcult for patients to express their preferred manner of death and have their preferences : respected if they are expressed (Kimura 1998).
Conflicts In Values
Advance directives aim to promote the values of individual self-determination and the best interests of the patient. The pragmatic difﬁculties mentioned earlier, which can hinder the realization of these values, make the binding authority of advance directives questionable. However, even if all of these difﬁculties are overcome, some doubts will remain. Conﬂict arises when the implementation of advance directives promotes the aforementioned values but violates other values.
A loving family may regret that the living will of an incompetent patient demands termination of life-sustaining treatment. Honoring the patient’s living will may cause them deep grief and violate the value of promoting the best interests of the family. Alternatively, if a patient’s living will insists on the continuation of expensive life sustaining treatments, then respecting the patient’s wishes may impose ﬁnancial costs that are disproportionate to the family’s income. The moral task then becomes deciding between the competing values of the patient and the family.
While scholars tend to agree that patient self-determination should prevail in this case (as seen above, however, some critics believe that the interests of third parties provide a sufﬁcient reason to trump advance directives, given that advance directives often represent the patient’s preferences inaccurately), a more controversial moral question arises when a patient’s past decision conﬂicts with their current interests. Of special interest are situations in which the two values that advance directives are intended to realize or promote (viz., individual self-determination and best interest) come into conﬂict with one another. Speciﬁcally, the type of situation that is pivotal for the consideration of this question involves a patient with dementia who lives an apparently happy life but who previously drafted advance directives that indicate the desire not to live in a state of severe mental impairment.
Consider an individual who has drafted a living will, stating that his or her life should be swiftly ended by injection of a lethal drug upon the development of severe dementia. Suppose that this individual is later afﬂicted with Alzheimer’s disease and loses the capacity to make decisions as the illness advances. Suppose further that, despite mental deterioration, the patient appears to experience no negative emotions and is entirely free of physical pain. The patient even appears to take pleasure in various activities and events, including picture drawing, singing, and visits with friends. It seems indisputable that this patient has interest in continued life, despite having a living will that explicitly demands active euthanasia. In order to honor the living will and self-determination of the formerly competent patient, the best interests of the presently incompetent patient would have to be compromised.
Alternatively, suppose that the patient eventually becomes incapable of consuming food orally, requiring a nasogastric feeding tube for survival, but still takes pleasure in such activities and events as mentioned above. In this case, a living will that demands termination of life-sustaining treatment (a means that is less active than injection of a lethal drug and is legally permitted in a larger number of societies) presents the same dilemma.
The moral opinions of commentators are sharply divided over whether a living will should be respected in such cases. Some writers believe that a living will must be respected even in these cases, maintaining that people have a critical interest in planning their own lives and that upholding living will directives is essential for ending life in accordance with their individual plans. Honoring the living will directives of people who wish for a hastened death in the case of severe dementia can be said to have the value of promoting individual critical interests, as well as the inherent value of respecting individual self-determination. Some believe that the combination of these two is sufﬁcient to override the value of protecting the simple pleasures that the above patient takes in experiencing activities and events (Dworkin 1993).
Other commentators believe that there are serious moral problems with implementing living will directives in the case at hand, even assuming that the patient’s living will accurately reﬂects the patient’s real preferences . One important objection to the argument described in the previous paragraph maintains that it is not always obvious that enabling people to end their lives as they plan is more important than protecting the pleasures the same people experience in activities and events. This objection seems even stronger when considering the opposite scenario, in which the living will insists on the continuation of every treatment available to sustain life, while the patient suffers from severe physical pain that is not relieved by palliative medicine. Many consider it simply unjustiﬁable to force patients with dementia to endure severe pain for the amount of time that currently available medical technology might allow (Dresser 1995).
Another line of objections emphasizes the fact that patients with dementia are no longer capable of understanding the life plans that they previously authored. One of the questions posed is whether letting an individual’s life go in the planned fashion still holds signiﬁcance if the author of the plan no longer appreciates it. Some writers who consider mental functioning, particularly the continuation of memory, to be a necessary condition for the maintenance of personal identity maintain that the patient who presently has dementia is no longer the same person as the one who drafted the living will. For these writers, implementation of living will directives in the aforementioned case should be regarded as if one person was making decisions for another person rather than for the future self. Living will directives in this case could not be considered an exercise of self-determination (Dresser 1995).
The legal status of advance directives varies in different areas in the world. Laws in a handful of countries, mostly in North America and Western Europe, recognize the role of advance directives, in the form of living will and durable power of attorney directives. In other countries and regions, advance directives either have no role or are provided with some binding force in practice through guidelines and court decisions. Moral considerations offered in support of the binding force of advance directives are based on the values of self-determination and individual best interests, which are believed to be best served when an individual’s advanced planning is unconditionally honored. However, there exist pragmatic difﬁculties concerning the preparation of directives that accurately represent patients’ preferences and the interpretation of directives that are written using broad terms. These pragmatic difﬁculties pose legitimate concerns that advance directives may not always be effective in realizing these two values. In addition, various moral questions are posed by cases in which patients’ past decisions conﬂict with the interests of others or their own current interests. These cases also provide reasons to consider whether advance directives should be granted absolute binding force and, if not, how much authority should be endowed to them.
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