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Persistent vegetative state (PVS) is a condition in which a person with severe brain damage is described as being or, more precisely, seeming to be wakeful without awareness. This condition gives rise to many complex ethical and juridical questions, from the moral status of people in this condition and the dignity of their lives to the questions about the possibility of withholding or withdrawing life supporting medical treatments. People in this condition are regarded as alive and as holding the same rights accorded to every other human being. However, since these people are incompetent, all decisions need to be taken on their behalf. This aspect exempliﬁes the relational dimension of the question, which involves not only clinicians but also families, people close to the person, and the community as a whole. As for decisions regarding treatments and other wishes, advance directives, although not the same as informed consent expressed in real time, are considered as an important means to reveal one’s wishes in case one might develop this condition and to nominate a surrogate (or proxy) to take decisions on one’s behalf. However, no advance directives were presented in the most important legal cases involving PVS patients around the world; thus, the decision process proved to be extremely difﬁcult. The three main criteria applied in these cases were, ﬁrstly, of the substituted judgment, which depends upon the decision of the family or a close person on the basis of the personality of the person in question; secondly, the standard of clear and convincing evidence based on the wishes of the patient expressed while competent; and thirdly, the best interest of the patient. Uncertainties of diagnosis and prognosis of PVS give rise to doubts in addition to uncertainties regarding the methodologies of inferring wishes never expressed by the person. There are also opponents to the withdrawing of life support on principle. The Indian Aruna case highlights also the problem of avoiding the misuse of legal authority to take decisions on behalf of an incompetent person. Since PVS is, typically, a gray area, every solution is destined to be accompanied by a certain degree of doubt.
The deﬁnition of a vegetative state (VS) is still a vexing question not only because of the current level of knowledge in the neurological ﬁeld, which is still growing, but also because the deﬁnition of VS involves other controversial concepts like consciousness and awareness. Moreover, uncertainty regarding the exact diagnosis of this condition and prognosis adds more complexity to the issue. This uncertainty explains also the use of the adjective “persistent” instead of “permanent,” because there is no consensus on the possibility of afﬁrming the permanency of the VS in the future. The expression “vegetative state” per se might prove to be ambiguous for laymen, because evoking plant and not human life (nor even animal life) implicitly suggests an element of evaluation about the quality of life. According to the Oxford English dictionary, “vegetative” describes “an organic body capable of growth and development but devoid of sensations and thoughts.” Therefore, some, for example, the Australian National Health & Medical Research Council Information Paper, proposed in 2003 to substitute the expression with more neutral phrases like “post-coma unresponsiveness.” Similarly, the European Task Force on Disorders of Consciousness chose, in 2010, the expression “unresponsive wakefulness syndrome (US).”
“Unresponsive” means that these patients only show reﬂex movements without response to commands. “Wakefulness” relates to the presence of eye opening – spontaneous or stimulation induced – never observed in a coma. “Syndrome” stresses that a series of clinical signs are assessed (in line with the Australian NHMRC).
Moreover, considering the uncertainty of the prognosis, some propose avoiding adjectives like persistent or permanent and using only expressions like VS for a speciﬁed number of months or years.
The term VS was ﬁrst documented in 1972 when two neurologists reported a clinical description (criteria for deﬁnition) of this syndrome (Jennet and Plum 1972). This condition is described essentially as a neurological condition characterized by wakefulness without awareness. Wakefulness and awareness are considered by neurologists as the two main functions of consciousness. The distinguishing characteristic of persistent vegetative state (PVS) is that the brain stem remains alive and functioning, while the cortex has lost its function and activity.
In 1994, the consensus statement of the MultiSociety Task Force summarized current knowledge of the medical aspects of PVS in adults and children. According to this statement, a VS is a clinical condition of complete unawareness of self and the environment, accompanied by sleep-wake cycles, with either complete or partial preservation of hypothalamic and brain stem autonomic functions (wakefulness).
In other words, wakefulness without awareness means that patients in a VS show no evidence of sustained, reproducible, purposeful, or voluntary behavioral responses to visual, auditory, tactile, or noxious stimuli, show no evidence of language comprehension or expression, have bowel and bladder incontinence, and have variably preserved cranial nerve and spinal reﬂexes. A person in a VS may open their eyes, wake up, and fall asleep at regular intervals and have basic reﬂexes, such as blinking when they are startled by a loud noise or withdrawing their hand when it is squeezed hard. They are also able to regulate their heartbeat and breathing without assistance, and they may moan or make other sounds especially when tight muscles are stretched. They may cry or smile or make other facial expressions without apparent cause. They may react to a loud sound with a startle.
Recent advances in this ﬁeld have led to the preference for the expression of “no evidence of awareness” instead of “absence of awareness” as cited in the above mentioned consensus statement. In fact, the absence of awareness has not been proved yet. As it is deﬁned, consciousness – the state of awareness of self and the environment – is an inference that observers make from a person’s behavior. Moreover, thanks to modern techniques, like neuroimaging and electroencephalography guided transcranial stimulation, evidence of some residual cognitive processing has been reported (Monti et al. 2010).
PVS state is deﬁned as a VS present for a speciﬁc period of time following an acute traumatic or nontraumatic brain injury or lasting for at least a certain period in patients with degenerative or metabolic disorders or developmental malformations.
According to some authors, the diagnosis of PVS must be kept distinct from its outcome.
The research evidence is rather limited and difﬁcult to interpret. In general, however, experience suggests that the likelihood of functional improvement for people in a state of PVS is limited, and the longer the person remains in PVS, the lower the chance of improvement. The probability of significant improvement is less for people whose PVS is of nontraumatic origin. There is little data available to indicate whether different types of care or intervention make a difference to prognosis.
At the same time, it is not unheard of for people who have been in PVS for some years to emerge from a severely incapacitated state to a state of some functioning where, although still dependent, they are able to participate actively in their own lives and with others.
Three categories of disorder can cause such a state: acute traumatic and nontraumatic brain injuries, degenerative and metabolic brain disorders, and severe congenital malformations of the nervous system.
A VS is different to a coma which is a condition characterized by lack of both awareness and wakefulness. Usually, people in a VS are people who were in a coma, and their condition evolved into a VS.
Patients in a coma may also evolve toward a different condition called minimal conscience state (MCS). People in MCS prove to be not only wakeful, but also they reveal some signs of awareness, although this may be inconsistent. Furthermore, people in MCS are more likely to recover even after years of being in this condition. In addition to the difﬁculties in diagnosing PVS, the difﬁculty in distinguishing it from MCS has been widely documented. In particular, it is very difﬁcult to be certain that a person who has sleep- wake cycles is not responding at all, and it is not possible to be certain that the person is unaware or what level of awareness he or she might experience. In MCS, there may be a delay between a stimulus (for instance, touch, light, movement, voice) and any response, and responses may be ambiguous and difﬁcult to identify.
Another different condition is the so-called locked-in syndrome. People in this condition are aware and wakeful, but they do not have the capacity to show their awareness, because of their incapability of most voluntary movements. However, most of them can move their eyes and communicate through the voluntary movement of opening and closing their eyes.
Although the PVS implies severe brain damage, it does not necessarily correspond to the conditions of cerebral death which equates to complete and irreversible loss of brain function (including involuntary activity to sustain life).
Thus, according to the medical criteria on cortical death, a patient in a VS, in fact, is alive. Evidently, the person needs to be cared for because of his or her state of dependency. Most of the time, they receive only nursing care: to have their airway suctioned regularly to prevent secretions from blocking it, to be turned in bed to avoid bed sores, to be fed and hydrated, and to have attention paid to the excretion tubes. Medical needs may arise from serious infections that require workup and extensive antibiotic treatment. Thus, when PVS is stabilized, there are doubts about the deﬁnition of the person as a “patient” on the basis that the person has no “disease” to be cured. Consequently, some propose describing the condition as a severe form of disability and the person as a disabled.
PVS is more common in developed countries where health-care systems are more sophisticated, and patients can be treated with resuscitation techniques that preserve life especially after car accidents or similar.
Ethical And Juridical Questions
The life condition of patients in PVS gives rise to many ethical and juridical questions.
The First Conceptual Framework Regards Issues Of Legal Death, Dignity Of Life, And Moral Status
(a) Can this form of life be considered life regardless of how the current statutes deﬁne death?
(b) Considering the extremely poor quality of life without any apparent relationship with the external environment, the dignity of life in this condition is put in doubt.
(c) Furthermore, for the same reason, it can be hypothesized whether a patient in this state can be regarded as a person or not.
As for the issue regarding the determination of death, there is no general consensus that a patient in this condition is regarded as dead (Winkler 1988). Moreover, the question seems too abstract because it is inconceivable to bury people who have a beating heart and are still breathing. More debatable is the question whether, although their body is alive, they can no longer be considered as a person (Brody 1988). In fact, this can open the door to withdrawing life-sustaining care like nutrition and hydration in order to induce death or allow death to happen naturally.
The position that excludes the deﬁnition of a person is linked to the more general opinion that views self-awareness and consciousness as criteria for personhood and consequently refutes attributing “personhood” to fetuses of up to 90 days and to people born with a malfunctioning cerebral cortex, in addition to patients in PVS. However, it is not so easy to determine the measure of lack of self-awareness and consciousness required to exclude the description of an individual as a person. Moreover, the deﬁnition of a person based on the criteria of self-awareness may prove to be insufﬁcient in distinguishing a human being from a machine like a computer that may be able to achieve self-consciousness (Goldberg 1991). Thus, it has been proposed to substitute this deﬁnition with another based on the capacity for social interaction. Unfortunately, every attempt in this direction seems to be characterized by a materialistic approach which claims to be able to evaluate conscience or capacity for social interaction on an empirical basis or methodology (Shea and Bayne 2010). When and on what basis one should ascribe awareness of others are two of the most vexing questions in the philosophy of mind and in the science of consciousness. Moreover, as mentioned above, a series of recent experiments has put in doubt the assumption of the lack of consciousness of these patients. Ultimately, this is a slippery issue which may result in discrimination against people on the basis of their physical condition. It contradicts the tendency in the history of human rights toward the broadest concept of man, without even considering the problem of the legitimacy of establishing criteria that leads to such discrimination. Ultimately, denying “personhood” seems to be like a shortcut to discriminating against people when it is impossible to say that they are dead.
The acknowledgment of personhood independently from the state of the cerebral cortex and the degree of self-awareness and consciousness does not imply a unique solution, that is, the support of the patient till death is determined according to the common criteria. In fact, while there are opinions in favor of providing care and necessary medical support, there are different opinions which question the concept of dignity because of the poor quality of life, and thus, the door is opened to uncertainty concerning decisions about ending life in this situation. Often reference to the artiﬁcial and natural dyad is made since PVS condition is a result of technological progress which in these cases is able to prevent people from dying, but not sufﬁciently advanced to be able to make signiﬁcant improvements to their condition.
The Second Framework Refers To The Practical Issues About How To Treat People In A PVS
There are some general principles that are commonly taken into consideration once individuals in PVS are recognized as both persons and indeed alive. A person in PVS must be respected without ignoring any aspects of human dignity that may be implied. The principle of respect for a person is expressly provided for, for instance, in the Italian constitution, mentioned in the Aruna case and strongly underlined in the ethical guidelines adopted by the Australian government. Respect for a person certainly means respect for his or her autonomy, but the former does not correspond necessarily with the latter especially if autonomy is not interpreted within a framework of solidarity. Otherwise, respect would slide into indifference. This is particularly true when the person is incompetent, and at most, only his or her living will is available for reference. When people are not capable, respect should be the focus of special attention in order to ensure appropriate care is administered to the person, who should be treated as a human being since he or she has worth per se.
This means that he or she should be respected with regard to welfare, rights, and, when ascertainable, beliefs, convictions, perceptions, customs, and cultural heritage. As for rights, they can be ordered into two categories, rights of the persons as individual entities on one hand and rights of individuals as social beings on the other. Included in the category of individual entities are the right to life, liberty, and security; the right to have their religious and cultural identities respected; the right to refuse or have medical treatment withdrawn, including by advance care planning; the right to access health care that is appropriate to their needs; the right to privacy and conﬁdentiality; and the right to approach death peacefully. As for individuals as social beings, rights to maintain relationships with the family and the remaining social environment that the person used to engage with before succumbing to the condition of PVS are of great importance. These latter rights imply practical consequences like easing visitor access to hospitals when the admission of person in PVS to hospital is necessary and promoting the administration of care and treatment at home when possible. Particularly, the family of the person in PVS or people who take care of him or her should not be ignored not only because of the close relationships in play but also because they represent an integral component of the care given to the person. Therefore, they should be provided with accurate and timely information which is fundamental for ensuring the provision of appropriate assistance and necessary if they are to be involved in decisions that affect the person in question. They need also not only to be informed of the person’s real situation and future prospects but also receive instruction on the typology and methodology of providing care and assistance, when necessary, in addition to advice on how to deal with their own responses to particular situations.
Experience suggests that the presence of the family, if informed and supported, can prove to be of great help. Some observations of the state of the patient which could be useful for a more accurate diagnosis or any slight improvements reported by families are not always detected or acknowledged by clinicians. This apparent contradiction may in some cases be explained by the difference between the time devoted to the person by the family and the time devoted by clinicians. For instance, the role of the family is reported as being useful in making the difﬁcult distinction between PVS and MCS, given that over an extended period of observation, any delayed responses to stimulus, typical in MCS, are more likely to be detected.
In general for people in PVS, decisions on treatment and care are made on the basis of prognoses that are, at best, imprecise. Therefore, especially at the beginning, these decisions should necessarily be provisional. Life expectancy is difﬁcult to predict and may range from months to decades. The person’s condition is not static, sometimes worsening, sometimes gradually improving, since the person over time may emerge to a state of MCS or better.
Because these changes in the person’s condition may be excruciatingly slow (over years), continuing review is crucial in the long term. Also some increased functioning may be reported when the person learns to adapt better to long-term disability over time.
Whatever the decision may be, time is a critical factor. Accurate diagnosis often takes many weeks or longer. Similarly, the prognosis becomes clearer only over many weeks or months. Thus, periodic clinical reassessment is essential. This factor and the related problems regarding diagnosis and prognosis should be taken into account when the most important decisions are being faced.
Since the time that the ﬁrst cases were brought to courts, the most controversial practical issue has regarded the possibility of withdrawing some forms of care, especially antibiotics, nutrition, hydration, and respiration. Regarding nutrition and hydration, a common vexing question is whether artiﬁcially supplied ﬂuid and nutrition (AFN) is a medical treatment or rather a form of mandatory basic care, given that nutrition and hydration generally are not means for combating a disease, but only to provide daily needs as for a normal person. According to leading opinion, they are regarded as medical treatments, considering that the treatment needs some medical skill and sometimes patients with PEG tubes experience complications in the long term due to the tube. Anyway, considering AFN as a medical treatment, the question is as usual whether the treatment can be judged as disproportionate or unreasonably burdensome. In fact, when a treatment is disproportionate, it can be discontinued or simply not administered by physicians. This issue can be solved by referring to either objective or subjective criteria. It is not so easy to select the criteria to solve the question because weighing up the advantages and disadvantages is controversial. For instance, the improvement in quality of life as a possible advantage raises questions about the very meaning of quality of life. Following the subjective criteria, that is, letting the person subjected to, or might be subjected to, the treatment decide means fundamentally that the issue about proportionality is of less importance or of none at all, and what mostly counts is the choice of the person whatever it might be based on. A midpoint between objective and subjective criteria could be that doctors in their weighing up of the pros and cons should take into account the personal views of the person in question expressed while competent.
The issue about withdrawing care is tightly linked with the question of exactly who is entitled to decide if and when to withdraw those types of care.
From the point of view of the inherent conﬂicting values of these cases, an appeal to rights in both meanings, substantive negative rights, such as the right not to be killed, and substantive positive rights, such as the right to be aided in life-threatening situations, is one of the most critical. These rights correspond to duties and especially, the duty not to kill is of particular signiﬁcance in every society, so important that it is disputable whether the right not to be killed may be considered as a waivable right like rights relating to economic interests. These cases are often called “right-to-die” cases, although this phrase is a misnomer for two reasons at least. From the legal perspective, the issue in these cases is whether or not to disconnect artiﬁcial means, like the feeding tube or the ventilator that keeps the person alive, in order to let them die. The doctors are requested to withdraw the support, not to take action like administering a lethal medicine in order to directly cause death. In fact, what is at issue here is the possibility of extending the well-established right to refuse or withdraw medical treatments to incompetent patients which is based on rights to bodily integrity and freedom from unwanted touching. From a more general perspective, as was said, everyone is going to die sometime, and there is nothing that one can do to prevent an ultimate death. Thus, the only possibility might be to die sooner than one would without any action being directly implemented to cause death. Moreover, the right to die would imply the duty of someone to cause one’s death. Therefore, making the distinction between refusal and withdrawal of medical treatment is strongly supported. The US Supreme Court stated that on one hand “when a patient refuses life-sustaining medical treatment, he dies from an underlying fatal disease or pathology; but if a patient ingests lethal medication prescribed by a physician, he is killed by that medication.” On the other hand, the same court stated that a ban on assisted suicide is related to legitimate government interest such as, “prohibiting intentional killing and preserving life; preventing suicide; maintaining physicians’ role as their patients’ healers; protecting vulnerable people from indifference, prejudice, and psychological and ﬁnancial pressure to end their lives; and avoiding a possible slide towards euthanasia.”
Consequently, the issue is better categorized as one regarding procedural rights (the body of law that prescribes formal steps to be taken in enforcing legal rights) such as the right of an incompetent patient to refuse or withdraw health care. This right could be exercised, according to the American law system, also by a surrogate or proxy (a person who is trusted by someone to make health decisions on his or her behalf if the patient is unable to do so). This surrogate decision-maker can be nominated by the person in question in his or her advance directives (a legal document in which one spells out his or her decisions about end-of-life care, declares which treatments he or she wants in case of persistent unconsciousness, and expresses also other wishes regarding, for instance, organ or tissue donation) which may provide also some instructions. Otherwise, a surrogate has to be appointed by a court complying with certain requirements. When a surrogate is nominated by the person in the advance directives or, in his/her absence, appointed by the court, the problem of what the duties and the power of a surrogate decision maker are arises (Buchanan and Brock 1989). The values to be taken into consideration are autonomy, integrity of the person, respect of his or her person, and best interest of the person. In Western countries especially under the inﬂuence of American culture, a great emphasis is placed on the principle of self-determination or autonomy. From this point of view, a crucial question is that of ascertaining the real wishes of the person especially when there are no advance directives or, even if existing, a particular treatment or set of circumstances are not speciﬁcally provided for (Mappes 2003). In fact, although the advance directives should not be confused with a real and present informed consent or refusal of a competent person who is experiencing the particular condition of illness at that moment, they, nevertheless, prove that the person took the issue into serious consideration and tried to determine what would be his or her wishes in that hypothetical situation. Other casual statements or simply the behavior of the person should not be equated with advance directives. Thus, because of the very delicate nature of the matter, there is a particular need for clear and convincing evidence of the wish to not receive life-support treatment or to have it removed after a period of time in PVS. In fact, the principle, at least formally accepted, is that in case of doubt, the decision must be in favor of life. However, in some cases, the de facto principle, in dubio pro morte, is followed given that permission to withdraw life-sustaining treatment is granted once a patient is declared permanently vegetative and the desires of the patient are hypothetically constructed on the basis of lifestyle, religious beliefs, and other indications from which one could infer the personality of the person when he or she was capable. This method can lead only to probable wishes that are not established in function of the individual in question, but instead with reference to categories of people who are thought more likely to opt for one particular solution rather than another. Moreover, signiﬁcantly, these surrogate decisions are usually restricted to cases of PVS, given the extraordinarily poor quality of life, and denied to severely mentally and physically disabled people who are dependent on artiﬁcial nutrition and hydration, but, however, judged as not being unconscious.
There is a difference, which is not always well recognized, between self-determination, that means that a person chooses what he wants for his or her body, and the integrity of a person’s character which is perceived fundamentally by his or her environment and which is determined by his or her lifestyle, his or her expressed or apparent beliefs, and so on. The concept of self-determination, or autonomy, implies that the focus should be on a statement, documents, or other forms of expression of the will of the person in question. The concept of integrity implies that people should act in line with their beliefs and lifestyle. Consequently, decisions on whether to administer or not medical treatments in the absence of an expressed will should be taken by a surrogate drawing on his or her understanding and interpretation of the personality of the person as was apparent during the time when the person was competent.
According to a renowned opinion (Dworkin 1993), a decision based on personal integrity is related to the principle of the best interest of the patient, but even if this correlation is valid, the application of this principle is premised on only one point of view without taking into consideration any other criteria. The best interest of the patient is established by applying the absolute idea that the best interest is to live according to that individual’s lifestyle till the end of life even if the person in question has never seriously contemplated the notion of being or not being treated in case of PVS and has never decided what his or her preference would be. This idea that the risk of not satisfying the presumed desire for end of life as a result of an erroneous interpretation of the patient’s true will is worse than the risk of ending life by underestimating the chances of recovery is indeed a radical one. Keeping a person alive in PVS contrary to his or her probable wishes is explicitly considered as a cause of great damage. The opposing opinion inverts the rationale sustaining that while mistakenly continuing life, contrary to the wishes of the person, may cause a damage that can be remedied, erroneously ending life would indeed be irreparable. This point is clearly similar to the common argument against capital punishment.
Furthermore, reference to the integrity of a person is impossible in some cases, and doubts arise regarding the requisites for applying this criterion in many others. When the decision regards children of young age, the criterion is not applicable, and the question about how old the person should be in order to establish his/her lifestyle is delicate and controversial.
The concept of the standard of the best interest, which comprehends various aspects, is the criterion applied by the English House of Lords in the case of Anthony Bland and also by the Indian Supreme Court in the Aruna case. Substituted judgment is not favored in English law in relation to incompetent adults. Consequently, the criterion is the patient’s best interest which represents an application of the principle of benevolence. The doctors have to follow a course of action because it is in the best interests of the patient and is not inﬂuenced by personal convictions, motives, or other considerations. In the process of ascertaining the patient’s best interest, standard medical practice is of overriding importance, and the opinion of the people close to the patient should also be taken into consideration, although this opinion cannot be considered as the determining factor in the ﬁnal decision. Even though the result might be practically the same, from a theoretical perspective, the principle of the best interest of the patient implies an assumption of responsibility by the physicians who take the ﬁnal decision on the basis of many factors, not only with reference to the will of the incapable patient that in most cases is unobtainable and never updated to the immediate present. On the other hand, the criterion of best interest, which is rather generic, even more so than other general principles, requires a minimum of consensus concerning the goals of medicine; otherwise, in the current culture of subjectivism, it might be interpreted in a too varied or even inconsistent way. In line with English jurisprudence, if the justiﬁcation, in principle, for treating a patient who lacks the capacity to consent lies in the fact that the treatment is provided in his best interests, it must follow that the treatment may be discontinued where it is indeed no longer in his best interests. However, in such cases, an element of particularity emerges in the parallel between providing treatment and discontinuing it, because the obvious consequence of discontinuing life support is death. The main opinion is currently in favor of the crucial distinction between withdrawing life-sustaining treatments and euthanasia, that is, between cases in which a doctor decides to either cease or to continue to administer treatment or care for his patient which could or might prolong his life and those in which he decides, for example, by administering a lethal drug, to actively bring his patient’s life to an end. This distinction probably implies that the idea of natural death in its modern understanding is still relevant in this matter. In fact, since administering treatments could be considered as interfering with the natural course of events, withdrawing a treatment could be judged as a way of reestablishing the natural course of events and thus desisting from any attempt to help the patient with treatments that have proved to be useless. On the contrary, within the context of the practice of medicine, actively causing the patient’s death means provoking an indisputably artiﬁcial death by means of a professional act that should in fact be guided by the opposite purpose traditionally inspired by the Hippocratic Oath, which is to heal and save or prolong life. The distinction between natural and artiﬁcial lies at the heart of the opinion which motivates refusal to life-sustaining treatments on the grounds that an artiﬁcial life made possible only, or mostly, by medical treatments would be unacceptable. This distinction is often linked with the concept of dignity of life and that of dying with dignity.
The opposite opinion criticizes the idea of excluding dignity in some conditions of life, making reference to the principle of equality that excludes any discrimination and recognizes the dignity of individuals no matter their condition (Keown 1993). From this perspective, the idea that dignity of death depends on the fact that (the anticipation of) death is chosen or not is objected to. This criticism is particularly pervasive in the opinion based on the principle of the sanctity of life. In line with this principle that is consistent not only with religious beliefs, life is the most important value at stake, and thus, withdrawing life support is judged as immoral and also an action to be legally banned. For pro-life supporters, human life cannot be reduced to a subjectivist value, because the value of human life is of universal importance, and the cases in which causing death is condoned are strictly exceptional. Moreover, they underline the danger of a mistake being made over the reason for ending life (patient’s desires, erroneous diagnosis or prognosis, irreversibility of PVS) that can cause irreparable damage, while the opposite mistake is indisputably of less importance. Uncertainties inherent in PVS regarding the current state of knowledge of this condition strengthen this point. Moreover, they often appeal to the danger of abandoning vulnerable people and favor a sort of euthanastic culture which leads people in a vulnerable position to feel like a burden on the family and the whole of society and therefore to think that it is immoral to continue their life in such a state of dependency. The consequence of the neutrality of law about end-of-life choices is judged to be questioning the dignity of life in PVS itself, rendering more difﬁcult the choice for life over time. The concept of moral neutrality of law per se is disputed, because the law necessarily chooses options. Even if the law allows everyone to make their own choice, the law implicitly opts in favor of certain ethical principles, in this case in favor of a social indifference toward the dignity of life which is conceived as solely the result of individual preferences . If something is regarded as of value only because it is chosen, it cannot be considered a true value, and this conclusion is of great importance when the protection of life and dignity of people are at stake. On this point, the inﬂuence of the social environment on an individual’s choices and the effect of these on the social sphere should also be taken into account.
Moreover, when taking into consideration the actual difﬁculty in diagnosing VS with certainty and in making a prognosis and the need for accurate treatment of a patient in a comatose state followed by an appropriate rehabilitation, the culture in favor of a quick solution reduces automatically the chances of improving medical knowledge in this ﬁeld.
In particular, when physicians are obliged to implement decisions made on the basis of nonmedical criteria, conscientious objection may play a role in order to protect a physician’s freedom of conscience and avoid a slide toward “hetero-determination” in medical practice. Physicians should not become mere executioners if one wishes to preserve the professional nature of medical practice.
Finally, if care is provided, another issue pertaining PVS concerns the costs of the care, who should pay for it, and in a system with limited resources whether it is preferable to direct efforts and money to other types of medical needs. This can be described as an appeal to the consequences for the patient, for their families, for the providers, and for society as a whole.
Appeals to justice and cost-effectiveness have to be taken into consideration, the former in order to prevent any form of mistreatment of the vulnerable, the latter to avoid waste of energy and money or simply to redirect these resources to other more deserving people in a system with limited quantities of these resources. This problem is particularly important in countries where there is public support for health care and assistance for severely disabled individuals.
Because of their vulnerability, people in PVS need in particular to be protected against abuse, neglect, exploitation, or discrimination.
Issues Arising In Famous Legal Cases
The bioethical issues like the bio-juridical ones have risen in parallel with the cases brought to courts. These issues have prompted heated discussion not only among bioethicists and bio-jurists but also in the public arena. Initially, it should be noted that the cases are necessarily characterized by the lack of a real adversarial nature of the judicial process precisely because of the incapacity of the person in PVS. From a global perspective, the ﬁrst cases were brought to court in the USA and the UK and ignited worldwide debate. An example not only of the global nature of the debate but also of the inﬂuence of American cases is a case decided in Italy (1991–2007), regarding a daughter, lying in a PVS for 17 years, when after a long trial, the father was granted permission to have the doctors terminate AFN treatment. The last case reported below is from India and probably the most famous outside the Western countries and is thus meaningful from a global perspective, although one should not understate the tight links between Indian and English culture which might have played a role. The court’s decision highlights and summarizes the most important ethical and legal issues from a worldwide perspective, including the UK Bland case and the most important American cases.
The ﬁrst renowned case that mentions the phrase “persistent vegetative state” seems to be the Quinlan case which was brought to the New Jersey Chancery Court in 1975 and, in 1976, decided by the New Jersey Supreme Court. This is also one of the ﬁrst judicial opinions in the USA to mention a living will.
Karen Ann Quinlan was 21 years old when she was found by her friends in a respiratory crises and unconsciousness. She was taken to a hospital where she was diagnosed as being in a comatose state. After some months, she was diagnosed as being in a PVS. The PVS was not said to be properly irreversible by the doctor who treated her, although an evolution of this type was judged unlikely.
One hundred and seven days after her ﬁrst day in the hospital, the parents asked the doctor to discontinue the ventilator. Their decision was partly motivated by their Roman Catholic belief, explicitly denying they were in favor of any form of euthanasia. They only wanted to make real a presumed desire of their daughter not to be kept alive by artiﬁcial means. The doctor refused, because “medical tradition” required continuing life support. At trial at the New Jersey Chancery Court, Karen’s father sought a declaratory judgment that he, after being appointed guardian of the daughter, could order her ventilator to be discontinued. Karen’s physicians, the hospital, and the county prosecutor and Karen’s guardian ad litem disagreed with the discontinuation of ventilation. The trial court found more grounds in the position in favor of the continuance of life support. The trial court also thought that the daughter’s prior statements made by Karen when competent as to her distaste for continuance of life by extraordinary medical procedures were remote and impersonal and thus lacking signiﬁcative probative weight.
The Supreme Court focused on Miss Quinlan’s poor condition and prognosis stating that “no external compelling interest of the State could compel Karen to endure the unendurable, only to vegetate a few measurable months with no realistic possibility of returning to any semblance of cognitive or sapient life.” They added that they perceived “no thread of logic distinguishing between such a choice on Karen’s part and a similar choice which, under the evidence in this case, could be made by a competent patient terminally ill, riddled by cancer and suffering great pain.”
The Supreme Court accepted the parent’s argument that Karen’s right of privacy included the right to decline or withdraw medical treatment: “[p]presumably [the right of privacy] is broad enough to encompass a patient’s decision to decline medical treatment under certain circumstances, in much the same way as it is broad enough to encompass a woman’s decision to terminate pregnancy under certain conditions.”
Moreover, the Court stated that “the State’s interest Contra weakens and the individual’s right to privacy grows as the degree of bodily invasion increases and the prognosis dims. Ultimately there comes a point at which the individual’s right overcomes the State interest.”
However, once this constitutional right is recognized, this does not imply that the personal exercise of it can be equated to the exercise of it by a guardian on behalf of the person in question. This right is personal in nature, and the vicarious exercise raises problems because of the uniquely personal relation of this right to the individual himself. This problem was recognized by the court that argued thus: “If a putative decision by Karen to permit this non-cognitive, vegetative existence to terminate by natural forces is regarded as a valuable incident of her right to privacy.. .then it should not be discarded solely on the basis that her condition prevents her conscious exercise of the choice. The only practical way to prevent destruction of the right is to permit the guardian and family of Karen to render their best judgment .. .as to whether she would exercise it in these circumstances.” On this basis, the Supreme Court decided to appoint Miss Quinlan’s father as guardian of the person of Karen Quinlan with full power to make decisions with regard to the identity of her treating physicians. The court also made clear that the decision of withdrawing life support should be taken, provided that attending physicians conclude that there would be no reasonable possibility of Karen’s ever emerging from her present comatose condition to a cognitive, sapient state and provided that the hospital ethics committee or similar body of the institution in which Karen was then hospitalized would agree about the poor prognosis. Miss Quinlan died at the age of 31 years, 9 years after the removal of the respirator, due to pneumonia as a result of the respiratory congestion that had been mounting for several months before death.
Differently from the Quinlan case, the Cruzan case was brought not only to the Supreme Court of the state where the person lived (Missouri) but also to the US Supreme Court, thus highlighting the orientation of the jurisprudence of the most important body of justice in the USA.
The US Supreme Court conﬁrmed the possibility of withdrawing medical life support of a person in PVS, but on different grounds to the Quinlan case. The Supreme Court of New Jersey, in the Quinlan case, argued on the grounds of privacy and viewed the family as the surrogate decision-maker without relying on prior statements made by the person when she was competent and living under very different set of circumstances. In contrast, the US Supreme Court, referring to the Cruzan case, stated that “The Due Process Clause does not require a State to accept the ‘substituted judgement’ of a close family member in the absence of substantial proof that their views reﬂect the patient’s.” Moreover, the US Supreme Court stated that the right of a competent person to refuse life-saving hydration and nutrition “does not mean that an incompetent person should possess the same right, since such a person is unable to make an informed and voluntary choice to exercise that hypothetical right or any other right.” In other words, the Cruzan case focuses on a standard of clear and convincing evidence in order “to assure that the surrogate’s action conforms as best it may to the wishes expressed by the patient while competent.”
From a certain perspective, one might think that the Cruzan case shifts the basis of the possibility of withdrawing life support from the substitute judgment based on the privacy of family to the principle of self-determination.
However, it should be noted that one might think that applying the doctrine of Quinlan implies a “transparent ﬁction.” The court renounced attributing ultimate value to remote and abstract statements and deferred to the judgment of the family, the closest social environment to the person. The family was thought to be in the best position to evaluate the person’s lifestyle and hypothesize what the choice of the person might have been if he or she had been competent.
In the Cruzan case, the court focused on the problem of potential abuse of substituted judgment and the fact that a judicial proceeding, in order to determine the wishes of an incompetent person, may very well not be adversarial in nature, therefore lacking the added guarantee of accurate fact ﬁnding that this type of process brings with it. Consequently, the court stressed the importance of clear and convincing evidence. However, what was called a “transparent ﬁction” might transpire to be a nontransparent ﬁction. The proof of the existence of an unexpressed will, unlike a precise disposition in a living will, is very difﬁcult to establish, and very often, lifestyle, as described by relatives and friends, becomes the ultimate criterion on which a hypothetical will is established.
The Schiavo case is a good example of this point. At the age of 26 years, Terri Schiavo was diagnosed as being in PVS. Since there were no advance directives (living will), her husband was appointed formal guardian by the court. After a long judicial struggle with Terri’s parents, the husband eventually succeeded in obtaining a judicial decision in favor of the removal of the PEG tube, and Terri Schiavo died 13 days after the removal of the PEG tube. The decision was motivated by referral to some casual statements Terri made to her husband and other members of his family. Although the guardian ad litem pointed out that these statements did not represent the clear and convincing evidence standard required by Florida State law, in addition to the fact that the husband may have had a signiﬁcant ﬁnancial conﬂict of interest, the husband remained in charge as guardian of Terri Schiavo till the end. Ten months after the death of Terri, the husband married the woman with whom he had been in a relationship for 10 years and had two children.
The case of Anthony Bland, a man lying in PVS as a result of severe injuries suffered in the Hillsborough disaster, was decided by the House of Lords. The result of the case did not differ regarding the practical consequences of allowing withdrawal of certain treatment from the aforementioned American cases, but it is different in terms of the grounds of the sentence and to whom authority is conferred in order to make the decision regarding the type of treatment. The English judges preferred to refer to the principle of the patient’s best interest, and the ultimate decision, supported by his parents, was taken by the physicians in charge of Anthony Bland. “That question (assuming the continued availability of the system) can only be answered by reference to the best interests of the patient himself, having regard for established medical practice. Indeed, if the justiﬁcation for treating a patient who lacks the capacity to consent lies in the fact that the treatment is provided in his best interests, it must follow that the treatment may, and indeed ultimately should, be discontinued where it is no longer in his best interests to provide it. The question which lies at the heart of the present case is, as I see it, whether on that principle the doctors responsible for the treatment and care of Anthony Bland can justiﬁably discontinue the process of artiﬁcial feeding upon which the prolongation of his life depends.” The Lords also made the distinction between withdrawing life-sustaining treatments and euthanasia, calling this border as the “Rubicon which runs between on the one hand the care of the living patient and on the other hand euthanasia – actively causing his death to avoid or to end his suffering. Euthanasia is not lawful at common law. It is of course well known that there are many responsible members of our society who believe that euthanasia should be made lawful; but that result could, (.. .), only be achieved by legislation which expresses the democratic will that so fundamental a change should be made in our law, and can, if enacted, ensure that such legalized killing can only be carried out subject to appropriate supervision and control.”
Not surprisingly for a court of common law, the House of Lords made also reference to the American precedents. More surprisingly, though, in the 1997 sentence of the Italian Corte di Cassazione – the highest court apart from the constitutional court – in relation to the Englaro case, one can ﬁnd Bibliography : to the American courts and the principle of law applied by them. It should be noted that Italy is not a country that applies common law, and at the time of the case, there were no legal provisions for advance directives nor principle of law that allowed a guardian to make a substituted judgment in such very personal decisions. Thus, the Italian case can be considered as strong evidence of the global inﬂuence of American law. The Italian court held that judges can authorize the removal of medically supplied life-sustaining treatment for patients who have been declared incompetent when two conditions are met: ﬁrstly, it is clear that the patient is in an irreversible PVS, according to international scientiﬁc standards, and, secondly, it can be determined by clear and convincing evidence that the patient would not wish to be kept alive through artiﬁcial means, based on the patient’s personality, lifestyle, and moral convictions, as described by the “representative” of the patient. This case became a long judicial struggle which, like Terri Schiavo’s case, divided public and political opinion alike.
Aruna Ramachandra Shanbaug is reported to have been in PVS for 37 years as a result of a terrible assault. The case was brought to court by a person who wrote a book about her and claimed to be her closest friend. In the writ petition, it is alleged that in fact Aruna Shanbaug was already (virtually) dead, and hence, by not feeding her body anymore, “we shall not be killing her.” However, according to a team of doctors appointed by the court, she was not only technically alive, but also she apparently had some brain activity, though very little. She met most of the criteria for being declared in a PVS, and the withdrawal of life-support treatments was permissible according to the court, but this decision was not supported by the hospital staff, who had been amazingly caring for her day and night for so many long years (in 37 years, Aruna did not develop a single bed sore), who really were her closest friends (“the whole country must learn the meaning of dedication and sacriﬁce from the KEM hospital staff”). Since the hospital staff had clearly expressed their wish that Aruna should have been allowed to live, this was the decision to be respected. What the court stated about the need of a judicial check in case of decision to withdraw life-support treatments is also interesting. “In our opinion, if we leave it solely to the patient’s relatives or to the doctors or next friend to decide whether to withdraw the life support of an incompetent person there is always a risk in our country that this may be misused by some unscrupulous persons who wish to inherit or otherwise grab the property of the patient.” Consequently, “in the case of an incompetent person who is unable to take a decision whether to withdraw life support or not, it is the Court alone, as parens patriae, which ultimately must take this decision, though, no doubt, the views of the near relatives, next friend and doctors must be given due weight.”
In the ﬁeld of end-of-life matters, PVS is a gray issue which gives rise to many questions from whichever perspective one considers it. Withholding or withdrawing life support from an incompetent person is, by deﬁnition, not consented to by the real and present will of the person in question. Nevertheless, the paradox of a condition resulting from modern techniques that can prevent a person from dying but grant him or her only a life of extremely poor quality creates a dilemma. Moreover, not only advance directives written by the person but also statements of people close to the person that life support would have been refused by that same person if he or she were able to make him or herself understood cannot be easily ignored. While a decision taken by physicians in the best interest of the person might be criticized as paternalistic, a mere execution of a wish formally ascertained might well be criticized as a form of indifference toward the person and sometimes seen as an easy way to discharge society from the burden of the vulnerable suffering from this condition. The Aruna case illustrates this ethical and juridical conundrum. From a global perspective, the special care of Aruna provided by the hospital staff for such a long time is a lesson that extends far beyond the borders of India no matter what one might think the best solution of these types of cases should be.
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