9 Ethical Aspects
Care for patients in the vegetative state involves particular aspects that also affect those professionals dealing with patients who have an “uninhabited body,” lack consciousness for long periods of time, sometimes permanently, and have needs but no way of expressing them. These patients live an extremely critical clinical condition, and have no support from their previous experience and personality.
The most important aspect to consider among those that characterize human individuals (moral, legal, socio-economic, and, above all, medical and ethical) is the person himself or herself . If we identify a person as a unit that combines rationality and responsibility, continuity and identity, and is a center of relationships and bonds (in agreement with Max Scheler) , then the person is his or her own consciousness, and especially his or her own moral consciousness. This person appears canceled, and therefore lost, when consciousness is abolished, as in the vegetative state. However, since the body is present, the person also exists in a “potential” form.
Following this argument, Cohadon  reminds us of the way in which the embryo is considered to represent a potential person and is somehow in a vegetative state, which in this case evolves toward developing consciousness, rather than recovering it. The strong bonds with family members that become evident in patients in the vegetative state as a kind of “emotional stubbornness” also indicate that a “person” exists.
The particular bond between the patient and the attending and caring staff — who also take important measures without the patient’s consent, for a period of time often as long as several months — signifies a special relationship in which the patient’s consciousness is not manifest, but is reflected in and participating in that of the professionals caring for him or her . In a sense, this involves the transfer of a specific human quality, as a form of temporary custody of the consciousness of someone who is being cared for on a professional basis, which — as a result of the form of “emotional stubbornness” and dependence that comes into play – cannot be dismissed and is applied by the family to the patient and reflected onto the medical team. This approach to the moral aspects of the medical profession is not supported by scientific evidence, but is instead the result of a moral choice. Basically, it is therefore subjective.
However, there is agreement in all industrialized nations about the time window that needs to be considered. In general, patients in the vegetative state can be treated according to the (ordinary) rules of general medicine during the first 12 months after head injury (or 6 months in case of other etiologies). The attitude to assume becomes a problem after this initial period. It is for this reason that the issue of the person, as described above, is fundamental. It should be clearly stated that a great deal of hypocrisy is seen, especially on the part of opinion leaders, who often use, or abuse, the media to spread ethical — moral concepts among the population that are not only questionable, but are also based on erroneous interpretations of the pathophysiological evidence to begin with. We would therefore like to clear up all the issues we consider indisputable, especially since the concept of death has changed to the point that brain death is today recognized as “real” and defined by precise universally and legally accepted rules. It was this change of attitude that made transplant procedures possible.
The brain of the patient in the vegetative state is not only living, but also working . In fact, complex neurophysiological functions can be documented by recording the electrophysiological correlates of higher brain functions. Not only can brain activity at rest be recorded during wakefulness or sleep (using electroencephalography) in patients in the vegetative state, but in addition brain potentials with “cognitive” significance (such as the P300, contingent negative variation, and mismatch negativity) are also recordable (see p. 65).
To resolve the issue of whether a patient in the vegetative state is a potential organ “donor” (for instance, after the first year in this condition), it would be necessary to first declare the patient deceased and then provoke rapid death . Such a decision would therefore share all the characteristics of a homicide and would be a crime in any country. In addition, a decision to stop supplying nourishment would be an act of active abandonment. When such practices are used in patients in the vegetative state who in their earlier life have expressed a desire not to be kept alive under certain circumstances (the so-called “living will”), penal responsibility varies from country to country, depending on national legislation and legal precedents.
In a well-known law case, a court in Frankfurt am Main, Germany, gave a ruling on these matters in 1995. The treating physician and the son of an 85-year-old woman in the vegetative state following an illness lasting many months decided to suspend the patient’s feeding, except for tea. The prosecution accused both of attempted homicide, but in the appeal trial, the validity of the lady’s request not to be kept alive in case of coma (her “living will”) was acknowledged. It may appear surprising that the court accepted the vague testimony presented. However, the principle of respecting the patient’s will was established.
A sentence handed down by the Massachusetts Supreme Court was more precise and detailed, imposing on physicians the obligation to respect the will clearly expressed by a nurse, Paul Brophy, before surgery. He went into a coma due to problems arising from anesthesia, which later led to a vegetative state. The patient died 3 years later when his wife obtained from the court the right to stop feeding out of respect for her husband’s living will.
However, discontinuing hydration and nutrition is an act that necessarily incurs the patient’s death and involves great responsibility. It is important to clarify at this point that discontinuing nutrition cannot by any means be regarded as a passive (rather than intentional) act comparable to euthanasia, as the press and media have often suggested. The patient in the vegetative state cannot become the object of euthanasia (recently legalized in the Netherlands, in November 2000), as this would ignore the conditions that make euthanasia acceptable from a rational point of view. In fact, patients in the vegetative state cannot be considered to be in a terminal condition, and should be able, we believe, to live their life even though they may have been in a vegetative condition for more than 1 year. These patients neither appear to be suffering physically, nor are their moral rights restricted in any way. Above all, they have never requested to die, and no one is authorized to take such a decision for them. Also, it is not relevant to involve euthanasia in the argument in order to justify the demands of those who support the need for “active abandonment.” The rational basis of today’s ethics should be acknowledged.
A balanced distribution of the resources available for health care requires precise action when choices are to be made. From the ethical point of view, one can justify the use of public funds to support people forced by events to live a vegetative life, if the quality of their life can be expected to improve. Determining the quality of life is a task that cannot be considered merely from a medical point of view, but involves much broader categories, in which religious, philosophical, moral, ethical, legal, and social values need to be considered — values that express the level and type of civilization in the country concerned.
It is of primary interest to know what the actual costs are for patients who remain in the vegetative state for more than 6 months or a year, and whose expectation of vegetative life may be longer than this to an unpredictable extent. In France, these costs have been estimated to total more than € 100 000 . In the absence of precise estimates from different countries, five new patients in the vegetative state resulting from head injury can be expected per million population per year , of whom about 15–20% remain in the vegetative state after a year, with an average life expectancy of 5 years. At a cost of approximately $ 200 per day in specialized units offering proper nursing care, the annual costs would amount to about $ 365 000 for five patients.
Costs can be calculated with sufficient reliability and are likely to be equivalent in most developed countries. By contrast, calculating the “advantages” is difficult and depends to a large extent on each nation’s values and culture. The continuing process of cultural evolution itself depends on the importance assumed by the different values characterizing it and endorsed by citizens. Culture is strongly influenced by the media regarding issues that deal with the enforcement of new laws or changes in moral values; however, people are seldom provided with objective information, and news often break through because of their emotional appeal. For example, an American girl who died after spending 17 years in the vegetative state following a fall from a horse appeared in newspaper headlines as the “six million dollar woman.”
There are two lines of thought concerning “calculating the value of the life” of a patient in (permanent) vegetative state, and both are respectable, although they lead to diametrically opposed conclusions. Based on the considerations outlined above about the human person, it appears that the respect given to a person’s life is considered to be as inalienable in a vegetative condition as it is in conscious life by the French, Germans, Italians, and Spanish. By contrast, in relation to vegetative life quite different kinds of respect are attributed to conscious and unconscious subjects by the British, North Americans, Dutch, and perhaps also those living in northern Europe .
Jennett and Plum pinpointed this problem as early as 1972, stigmatizing the issue . A high moral authority in the judgment of the value of life, Lord Walton of Detchant — a neurologist who chaired the Medical Ethics Committee of the House of Lords in the United Kingdom — stated in 1995 that “in such cases, not only is the quality of life weak, but it does not exist.” Following legal deliberations over the case of Tony Blond, a new parameter was established: the patient’s best interests. Following a head injury, Tony Blond lived in a vegetative state for many years. The treating physician, together with the family and other physicians, asked for legal permission to discontinue treatment and feeding, and this was denied by the court. Following litigation, the question was presented before the Law Lords (Britain’s supreme court), who unanimously decided in favor of the right to remove the food cannula. Tony Blond died a few days later. The decision was justified on the basis of the “the patient’s best interests,” with reference to statements issued by the Medical Ethics Committee under the chairmanship of Lord Walton of Detchant, which established the legitimacy of interrupting all care (in this case meaning all food and water) if the act should serve to protect the patient’s best interests [10,11].
Another famous case that helped set a precedent in the United States was that of Karen Ann Quinlan, who in 1975 (at the age of 20) suffered cardiac arrest due to alcohol and hallucinogenic drug abuse, and then progressed to a vegetative state with ventilator treatment. Her parents and a Catholic priest asked that she be allowed to die and requested authorization to discontinue artificial ventilation. The attending physicians refused, and following a lengthy legal controversy, the New Jersey Supreme Court authorized stopping artificial respiration. However, the patient did not die and survived another 9 years. The case of Nancy Cruson was similar. She died 12 days after artificial feeding was discontinued, following a United States Supreme Court decision to endorse her living will after 6 years in the vegetative state . These and other similar cases started a widespread reaction in the United States that was echoed in the media, therefore leading to often inconclusive debates. Finally, as Cohadon  noted, discussion focused on the procedures used to put an end to vegetative life, rather than on the ethical principles that would justify active abandonment. In 1990, the American Medical Association (AMA) took a position that we consider incomprehensible, proposing the application of the same procedure to patients in the vegetative state as to terminal patients facing imminent death: to suspend life-prolonging pharmacological therapy, including nutrition and hydration . Although never applied on a large scale, the attitude in the United States is generally in favor of discontinuing care, either because physicians are unable to meet the patients’ needs or because the patients’ families are overwrought by the sacrifice made in assisting them. In the United Kingdom, too, permission from the courts is required in order to proceed with active abandonment by interruption of feeding. Families face high legal fees, and this may be one reason why active abandonment is infrequent. The opposite attitude prevails in southern European countries, as indicated by the French National Consultative Committee of Ethics statement in 1986: “Patients in chronic vegetative state are human beings with even a greater right to human respect, as theirs is an extremely fragile state” .
Following a debate among bioethical and legal experts, a group of 50 Italian physicians (anesthesiologists, neurologists, and physiatricians) issued the Crotone Document in 1998 , in which the authorities are urged to establish ad hoc guidelines or otherwise forbid the suspension of artificial feeding and discard measures that might be imported from the United States, the United Kingdom, and other countries — i. e., measures intended to limit therapy, reduce it to a form of compassion, or accelerate death.
The way the issue is handled, at least in the public media, is not lacking in hypocrisy. In reality, there has been insufficient effort to define principles, and it appears easier (or the issue is deliberately distorted in this way) to speak of euthanasia, active abandonment, or implementation of a “living will.” However, it is the maintenance of the patient that is regarded as worthless, and the costs of this maintenance are crucial. In our judgment, this is a very dangerous and even monstrous way of approaching the problem. In 1935, some 300 000 German citizens who had serious mental and neurological diseases (e. g., many children with hydrocephalus) and were therefore regarding as “having a life without value” (lebensunwert) were actively eliminated in Germany. This policy was endorsed by a democratically elected parliament and was proposed as an act of love for patients who would otherwise suffer uselessly. In reality, it was a rationalistic attempt to limit the costs of medical measures that were thought to be useless — perhaps in an anticipation of more recent ethical views.
No matter what values make a life worth living, the identification of them cannot be the responsibility of the attending physician. However, even when established by a democratic government, moral principles regarding life and health may have unforeseeable developments, which may also affect citizens who are not in the vegetative state.
The assessment of human and ethical values is not the concern of the physicians whose duties include caring for patients in the vegetative state. Physicians nevertheless have the duty to state clearly the extent of their professional expertise, so that those in a position to establish new rules can be fully informed.
• The patient in the vegetative state has a living brain. After a year, the patient is more often a minimal responder, although capable of expressing discomfort, pain, or a degree of relaxation, and therefore remaining an inexhaustible source of emotions for those who care for him or her.
• He or she is not terminally ill, and can continue to live in the vegetative state for many years.
• After a year, patients are generally no longer in need of special medical care, but only of nursing and feeding. In this sense, they are “cured” of the post-traumatic brain pathology that provoked an extreme degree of disability and forced them to live a vegetative life, but they are capable of experiencing strong emotions, and with a certain degree of probability, also able to provoke them. Even after one or more years, one can observe a partial resumption of conscious activity, corresponding to the clinical picture of the minimal responder (see p. 110).
5. Dolce G. Critica allo stato dell’arte della riabilitazione nella fase di risveglio dal coma. In: Dolce G, Rosadini G, editors. Unità di risveglio dal coma. Crotone, Italy: Polo Didattico Permanente/Istituto S. Anna, 1997: 27–41.
14. Comité consultatif national d’éthique pour les sciences de la vie et de la santé. Avis sur les expérimentations sur les malades en état végétatif cronique. In: Cohadon F. Sortir du Coma. Paris: Editions Odile Jacob, 2000: 206–215.
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