Some disability rights advocates are concerned that renaming certain severely disabled patients as "MCS" will lead to the devaluation of their lives and to the acceleration of their nontreatment or euthanasia.84 The Wendland case is an example of the MCS. Robert Wendland was a severely brain injured, but conscious man.85,86 Those who advocated that his food and fluids be removed described Wendland as "minimally conscious". Wendland had left no "clear and convincing evidence" that he would reject food and water or other routine life-sustaining treatments. Diane Coleman, president of the disablity rights group "Not Dead Yet", reports that Wendland's wife's lawyer, as well as 43 bioethicists, argued for the right to kill him by withholding non-burdensome medical treatment, making a legal distinction between "conscious" and "minimally conscious".87 Coleman states that the MCS should not be endorsed without meaningful input from the disability rights community.88 In 2001, eight national disability organizations and the Center on Human Policy at Syracuse University filed an amicus brief in the California Supreme Court in the Wendland case. Coleman goes on to say that "they [those who sought to cease treatment] hoped to take advantage of legal precedents allowing people diagnosed as persistently unconscious to be killed without the due process of law that conscious people have a right to expect. It does not take a physician to see that the criteria for diagnosing MCS are vague and overbroad. "Intelligible verbalization" is one of them. We might assume that these criteria would not be applied to those whose consciousness has never been disputed, but a broader application to people with dementia and labels of mental retardation is already being contemplated. The clearest aspect of these criteria is that it is very easy to be diagnosed with MCS but very difficult to "graduate" from it."89
D. Alan Shewmon MD, Professor and Chief of Pediatric Neurology, Olive View-UCLA Medical Center, is also critical of the categorization of MCS. In a letter to the medical journal Neurology, Dr. Shewmon writes:
"First the reference to consciousness implies knowledge of something that is intrinsically unknowable: the quality and intensity of someone else's awareness of self and environment. Both the PVS literature and MCS concept suffer from an oversimplified notion of "consciousness" and from conflating consciousness with responsiveness. These cases involve not only quadriplegia but (variably) apraxia of residual movement, agnosia, aphasia, amnesia, and executive dysfunction. Combining such deficits yields very limited or nonexistent capacity to follow commands or interact purposefully with the environment despite preserved awareness. Such patients deserve the benefit of the doubt regarding consciousness. But the Workgroup (on MCS) draws the opposite conclusion 'Until these diagnostic ambiguities can be resolved...the above definitions should be applied to all patients whose behavior fails to substantiate higher levels of consciousness.' Why "should"? Why not take the ethically safer course of presuming them conscious until proved otherwise? Secondly within the continuum of consciousness there is not meaningful demarcation between "full" and "not full", the corresponding proposed dichotomy between "severe disability" and "MCS" is thus artificial and inherently arbitrary. Third "minimal" implies much less than "not full". Therefore it is a serious misnomer for the supposed entity. Fourth, the proposed operational criteria may distinguish MCS from PVS but not from severe disability. Who can take seriously that answering correctly six of seven yes/no questions indicates "full consciousness" while five of six correct indicates "minimal consciousness"? Regardless of the Aspen Conferences' intent, the practical consequence of introducing MCS into today's ethical-juridicial climate will be to partition off a subpopulation of the severely disabled and brand them with a label associated more with VS than with severe disability. A legal pseudojustification is thereby provided for treating them not as disabled but similar to persons with VS. This is how one of the Workgroup's members, Ronald Cranford has already used MCS in the highly publicized Wendland case -- without evident objection from the Workgroup, even though Wendland had been documented by others to be higher functioning than the Workgroup's definition of MCS. Thus, MCS received acceptance in the courts and media before being adequately debated and accepted by neurologists. There is not clinical or research need for and there are strong reasons against, inventing a new diagnostic entity that inherently cannot be meaningfully demarcated from "severe disability".90
Should physicians really be deciding who is a "person" entitled to basic constitutional rights? Is MCS a diagnosis or a value judgment? Bernat (2002) states that "neurologists should examine patients with prudence and care and should not state conclusions about their patients' cognitive lives more confidently than they can objectively know. Society should acknowledge the limitations of diagnostic categories such as MCS and PVS and make laws respecting the dignity and welfare of persons that are based on an accurate understanding of the full spectrum of states of brain damage."91
Patients in the persistent vegetative state (PVS) were the first prisoners in what could be called the "food and water wars". They are the silent subjects of the musings of philosophers, the treatment of physicians, the motions of lawyers, the decisions of judges, the pleas of family members and the amici briefs of advocacy groups. Efforts to diagnose the PVS as "permanent" are usually directed toward establishing an end-point for therapy and/or nutrition and hydration. Many physicians and other health care professionals believe that continuing to treat the patient in PVS is futile. Since the Cruzan and Busalacchi court cases, more and more health care professionals have come to include food and water under the definition of "medical treatment". Medical treatment has traditionally included those actions taken to cure or ameliorate a disease or condition. Basic or ordinary care has traditionally included those measures routinely taken to "tend" or "nurse" the patient, and includes such things as hygiene, grooming, positioning, and the provision of food and fluids.
In the healthcare setting, feeding tubes are used when the patient has difficulty in swallowing, diminished consciousness, or a need to supplement inadequate oral intake when, for a variety of reasons, he or she cannot eat or drink enough to maintain health or sustain life. Feeding tubes may be indicated when an individual has had a head injury, is in a coma or has some other type of neurologic condition, such as a stroke or brain tumor that prevents swallowing. Feeding tubes may also be used to bypass an obstruction in the esophagus or pharynx. In many types of severe illness, a feeding tube may also allow adequate nutrition to be given to a person who is otherwise too debilitated to eat. Feeding tubes are sometimes used in demented patients when individuals seem unable to remember how to swallow. Absolute contraindications to feeding tube placement include conditions in which the feeding formula or water cannot be absorbed by the body or the GI tract is obstructed. Other contraindications include individuals who are in such severe kidney, heart, or liver failure that the body cannot process, metabolize, or excrete the nutrients or fluids that would be given via feeding tube. In addition, ceasing to eat or drink in the last few days of life is part of the dying process for the terminal and imminently dying patient.92
The use of feeding tubes in the PVS remains controversial. A number of professional associations, including the American Dietetic Association, have published guidelines regarding the withdrawal and/or withholding of nutrition and hydration.93 Because a period of time is necessary to make the diagnosis, a feeding tube is often placed at least as a trial measure to see if any recovery of function occurs. Arguments against providing nutrition and hydration to the patient in the PVS usually center around 1.) burdens, 2.) futility 3.) best interests, 4.) substituted judgement or some combination of these. As pointed out above, tube feeding is a very routine practice done in many types of patients with many types of conditions. It is neither very costly nor painful (excepting some postoperative discomfort in the aware patient -- not in PVS -- who has a surgical gastrostomy placement) nor terribly invasive.
One view is that enteral tube feeding is a medical treatment and that unwanted medical treatments can be withheld. This is a crucial point, and one in which misdefinition has led to the deaths of many patients in the PVS. The case for saying that enteral feeding is a medical treatment is extremely weak. However, some have said that tube feeding does not fulfill "the social role of giving food" to justify starvation as a simple elimination of a medical treatment.94 How this would justify dehydration is left to the imagination. Of course, food and water are more than just components in our "social roles" -- they are necessary for physical life, and anyone deprived of them will soon die. To qualify as a medical treatment, the definition of the treatment should include some reference to the distinctive goals of medicine, i.e. the restoration and maintenance of health, or of some approximation of health, and the palliation of symptoms, so that medical treatment will have some identifiable therapeutic or palliative or diagnostic function.95 Enteral feeding serves neither such function but the ordinary function of nourishing the patient. In fact it is somewhat odd that feeding was ever termed medical treatment at all. Although the type of feeding is prescribed by the physician, he would also prescribe a regular diet for another patient, which would of course not be classified as "medical treatment". The physician also places certain types of feeding tubes, but those are used to administer medication as well, not just food and water. It seems strange that the actual feeding tube itself, supposedly the burdensome and futile "treatment" is routinely left in after food and water has been withdrawn from the patient in PVS, so that sedative medications can continue to be given, thereby soothing the consciences of medical bystanders. It cannot be said that just anything a doctor does for patients counts as medical treatment. If it did, the distinction between medical treatment and ordinary care would collapse.96 Tube feeding is neither "high-tech", nor "extraordinary" care. The actual feeding of the patient is nursing care, and not medical care at all. It can be and often is performed by family members. Another consideration in "burden" decisions is the damage caused by any side effects. This is not generally the case with tube feeding, particularly with the PEG tube.
If tube feeding is "treatment", it follows that it may be withdrawn under certain circumstances. If it is, care, it cannot be withdrawn. Some of the mistaken notions heard in, for example, the Tony Bland case in the UK were that tube feeding is a treatment because the feeding is artificial.97 This begs the question of what exactly constitutes "artificial food" (and one can only venture a guess as to what constitutes artificial water). It was also asserted in the Bland case that the food administered by feeding tube requires a prescription (it does not), that professional skills are required to insert it (not always true with nasogastric tubes, always true with the PEG). It is interesting to note that baby bottles were once viewed as "medical intervention" also. A further assertion in the Bland case was that nutrition via feeding tube has to be monitored by a dietician. While this may be optimal, it is not absolutely necessary. Despite these facts, many in the medical profession and probably an overwhelming number of laypeople do believe that tube feeding is a medical treatment and therefore can be judged on medical grounds of "futility".
Andrews (1997) notes that a treatment is "futile" if it has no benefit or desired effect. In the PVS, tube feeding clearly achieves the objective of maintaining a good nutritional state. The food is not expected to have any direct curative effect on the damaged brain -- only to provide optimum nutrition to those parts of the brain and other parts of the body still living. The provision of nutrition also has a direct bearing on the ability of caregivers to successfully assess any remaining awareness or emerging responsiveness in the patient. Therefore, sub-optimal nutrition (or withholding) on grounds of "futility" can be a self-fulfilling prophecy. Another argument is that the feeding tube was inserted for a trial period of treatment which if the patient shows no improvement (i.e. treatment "fails"), it can therefore be discontinued. By some definitions of "treatment" one could then say that the treatment was successful, i.e. the nutrition and hydration did exactly what they were supposed to do. However, this view has been largely replaced by a more general view of the nature of nutrition as "treatment" (it is really dehydration that kills the patient), in that it has not enabled the patient to recover from his underlying condition. Andrews (1997) notes that this depends on one's view of medical care. Some would hold that medical treatment is always about "recovery" but in practice it is often about "damage limitation and maintenance of the status quo". Andrews concludes that what is being considered is not the futility of the treatment, but rather of the life.98 Weijer et al (1998) point out that the concept of medical futility fails in relation to the PVS because it confuses morally distinct cases: demand for an ineffective treatment and demand for an effective treatment that supports a controversial end (e.g. permanent unconsciousness) and that futility can be interpreted broadly and used to justify the withholding of treatment for socioeconomic and value-laden reasons.99 Webster's dictionary defines the term "futile" as serving no useful purpose, completely ineffective. So the difference is in the subjective assessment of "useful purpose" and "effectiveness".100
The American Medical Association's Council on Ethical and Judicial Affairs 1999 report on medical futility in end of life care states that their report limits itself to the use of interventions in patients with "life-threatening illnesses", but then contradicts itself in stating that the "use of life-sustaining or invasive interventions in patients in the persistent vegetative state or who are terminally ill may only prolong the dying process", thereby lumping PVS with the terminally ill although no terminal illness exists in the PVS patient.101 The Council admits that judgments of futility are inherently subjective and value laden.
Incurability, combined with potential long-term continued existence raises questions of withdrawing treatment from the non-terminal patient. Fenwick (1998) holds that the "best interest" designation is misapplied in the scenario of the PVS.102 She states that "best interests" "constitute something of a panacea in medico-legal decision-making". Fenwick requests greater honesty and clarity in establishing the "true objective" of treatment withdrawal i.e., "existing formulations focus upon whether we should treat so as to "prolong life" a construction which avoids the emotive nature of "causing the patient to die". Fenwick states that "this is simply a fact which if one is honest renders the decision one of life-or-death choice." The true objective should therefore be put bluntly: to establish whether artificial nutrition and hydration should be withdrawn (or withheld) from a patient in PVS such that the patient will die. She suggests that "best interest" criteria, as currently formulated, fail to address this true objective, thereby distorting both interests and principle. Fenwick goes on to say that withdrawing "treatment" in the form of nutrition and hydration, results in the death of a patient who is not terminally, but rather chronically ill. Thus we are not merely "letting" an already imminent death occur. "We are, in its purest form, considering euthanasia."103 Fenwick further states that the patient in the PVS has no interests, as the term is now narrowly (medically) defined, so it is therefore illogical to ascribe a "best interest" to the patient, there being no "pool" of interests from which to pick the "best". Fenwick also decries the "medicalisation" of the term "interests". Interests can be many and varied, some having nothing to do with physical condition or medical prognosis, i.e. religious beliefs, former opinion as to present condition, feelings towards family and perhaps even beneficence toward others.104
What is perceived as being in the best interest of a patient can vary tremendously depending on the experience and knowledge base of the people being asked and may reflect societal judgments about the intolerability of living with severe disability. Cultural and religious background can also affect how "best interests" are perceived. Beliefs and attitudes about one's purpose in life, relationship to a higher authority and the role of suffering might support the view that continued existence, regardless of physical condition, would be what most persons of like views would choose.
The "best interest" standard uses a "reasonable person" approach to determine whether the decision is in the "best interest" of the individual patient. When this standard is used, the surrogate decision-maker is not expected to draw on knowledge of the patient or his or her values. Rather, the primary responsibility of the surrogate is to make decisions that protect the patient from a treatment or outcome "most people" would not want and to advocate for a decision that will provide more benefit than burden to the patient. However, the reference to "most people" is problematic. Research has shown that able-bodied individuals, including many health care providers, believe that it would be in the best interest of individuals with certain severe disabilities to die. Yet, studies of self-reported quality of life of individuals living with severe physical disabilities typically show that they consider themselves to have acceptable levels of quality of life, although not necessarily equal to those of able-bodied individuals.105
"Substituted judgment" involves the use of a person's previously expressed wishes or values as the basis for a surrogate's decision. Legal standards vary on how specific previously expressed wishes need to be, with some states requiring "clear and convincing evidence" to meet this standard. There can obviously be problems with evaluating any such prior statements by the person. There is also a fundamental problem with weighing the previous statements of a person with severe brain injury, or even general considerations of how they might view their current situation. It is difficult to determine whether the individual who made these comments is the same person post-injury. Some feel that the hopes and aims of the person, i.e. their "critical interests" that have guided their life previously should now be carried over into the present situation. However, the person who is in the PVS (or MCS) now has new, different needs (as well as an uncertain memory about himself in the case of MCS). Previously expressed wishes and values reflect interests that may simply no longer apply to the person in their new situation. Another problem regarding the application of previously expressed wishes and values concerns the question of stability of preferences over time. It has been reported that approximately 15% of competent patients change their preferences for medical treatments desired over time, with a smaller percentage doing so if they have documented their preferences in writing.106 In addition, adjusting to serious disability can involve changing one's mind about the type of life that is worth living. Although more studies are needed in this area, there are reports in the literature of persons with catastrophic injuries (pre-injury or initially post injury) expressing a feeling that it would be better to die, but changes in these feelings occur over time, with the individual adjusting to the new state and finding new meaning in life.107
Living wills or other written medical directives are rarely available in cases of traumatic brain injury. This is because the victims of traumatic brain injury are frequently young persons and/or the injury is the result of a sudden, unexpected event. Phipps and Whyte (1999) point out that even if a severely brain-injured patient had a living will, it would only become operational if the (adult) person became permanently unconscious and terminally ill, conditions that might be satisfied in the PVS but are by definition not satisfied in the MCS. In addition, living wills can be difficult to apply in these cases because they are unlikely to be specific to the conditions relevant to the MCS. For example, most living wills do not prompt individuals to define their feelings about continuing to live in a state of severely impaired consciousness nor to indicate how long they would want to be "kept alive" in the hope of experiencing further recovery.108
Although a full discussion of the ethics of providing all medical treatments in the PVS is beyond the scope of this paper, it should be mentioned that if the decision is made that the patient should not continue living, there are several clinical options. The first three are commonly called "passive" or "omissions" of treatment, while the fourth is generally thought of as "active". The first is a do-not resuscitate policy, in which no CPR or intubation would be instituted in the event of cardiac arrest. The usual patient in the PVS is however, a young person in otherwise decent health and unlikely to experience cardiac arrest.109 The second option is not to treat intermittent medical or surgical conditions that occur, such as infections (from which, it should be noted, the patient may recover without treatment), or chronic conditions, such as renal failure or diabetes (from which the patient will generally not recover or will die without treatment).110 A third option is to withhold nutrition and hydration, which is the subject of this paper. This "method" leads to death from dehydration, usually within 14 days. A fourth "option" is euthanasia, the direct administration of a drug with the intent of ending a patient's life quickly. This option is currently illegal,111 although it should be noted that the difficulties and duration of ending a patient's life through dehydration will in all likelihood lead to an increased push for direct killing via euthanasia, and this, in fact, is already being called for by some writers.112
Ferguson (1997) states that perhaps this distinction ("active" vs. "passive" or "act" vs. "omission") is a moral obligation which ought to be given legal recognition. If the law is prepared to accept that, in some circumstances, a person's quality of life is so poor that he or she should not be kept alive then, Ferguson argues, it should not shrink from considering that it may in fact be more humane for a doctor to administer a lethal injection which brings about a quick death, rather than to omit to feed the person.113 Ferguson goes on to say that murder can be brought about by a positive act, such as by administering drugs which kill a patient or by an omission to act -- by failing to treat or feed a person. If a parent were to neglect to feed his or her child and that child were to die as a result the parent could be held criminally liable. Doctors owe their patients a similar duty of care, so a doctor who fails to treat a patient may be said to be in a position similar to that of a parent who neglects a child. The law does draw a distinction between 'acts' and 'omissions to act'. It is, however, not clear that this always or necessarily reflects a fundamental moral difference. A British lawmaker said "How can it be lawful to allow a patient to die slowly though painlessly, over a period of weeks from lack of food but unlawful to produce his immediate death by a lethal injection...? I find it difficult to find a moral answer to that question."114 Hopkins (1997) argues that the distinction between "passive" and "active" euthanasia retains a certain appeal based on age-old and vague ideas about "nature" and artifice" that have been largely unscrutinized. Hopkins maintains that once examined more closely the functional relevance of particular machines (such as feeding tubes) to particular bodies becomes evident, and consequentially the lines between the "rightness" of passive euthanasia and the "wrongness" of active euthanasia less clear.115
Some have likened the withdrawal of "artificially administered" food and water to the withdrawal of a ventilator, since in some respects they seem to be similar. However, the two are not as similar as they may at first seem. It is quite common for a patient on a ventilator to be making at least some respiratory effort on his own (in the PVS, of course, the patient is by definition breathing on his own). When a respirator is removed or "weaned" in the medical parlance, it is generally done with the hope and expectation that the patient's own respiratory efforts will be sufficient to sustain him. If the patient's own efforts are not sufficient, such failure is due to a disease or condition that prevents normal breathing. In the case of nutrition and hydration in the PVS, the patient has an intact digestive system. The withdrawal of food and water would not be done with the expectation that the patient would recover, but specifically with the expectation (intention) that he will die.
Discussions of providing nutrition and hydration to the severely brain-injured patient beg the question of whether "consciousness" is the primary thing that makes human life unique and special. The American Academy of Neurology holds that it is ethical to withdraw life support (including fluids and nutrition) from a patient in a PVS, provided the diagnosis is "secure" and there is evidence this accords with the patient's wishes (the unreliability of these declarations having already been mentioned). This reflects a common assumption that "consciousness" is what confers special value on human life.116 Beresford (1997) suggests that the Academy position on PVS is inconsistent with its later declaration that the taking of vital organs from anencephalic infants for purposes of transplantation is unethical because it violates the "dead donor" rule.117 Individuals in the PVS and anencephalic infants are both commonly thought to be permanently unconscious. It is arguably illogical to suggest that actions which cause their deaths -- removal of a feeding tube in one or removal of both kidneys -- are ethical for one but not the other.118 Finally, if consciousness is all-important and its absence alone is sufficient justification for withdrawing nutrition and hydration from the patient in the PVS, this fails to justify the situation of nutrition and hydration withdrawal in the MCS in which the patient is, by definition "conscious".
Some have justified life-ending decisions by redefining PVS as death.119 As Plum and colleagues have shown with positron emission tomography, cerebral blood flow and metabolism can be profoundly impaired in the PVS.120 Law professor David Smith has used this information to make his argument that PVS should be treated for legal purposes as equivalent to brain death.121 Smith is not the first to suggest that a permanent loss of consciousness be regarded as the death of a human being, and that ethical and legal rules should be altered to take this into account, but he is the first to rely substantially on advances in neuroscience in an attempt to change societal attitudes about the relationship between consciousness and human life. Even if PVS is not the same as death, there is a significant consensus that traditional constraints on decisions about life support apply less strictly to persons in the PVS than to other persons with fewer disabilities. The Quinlan court explicitly declared that the state's interest in protecting life wanes in proportion to the prognosis for regaining awareness.122 In other words, not all lives are equal when it comes to applying protective legal and ethical rules.123
The allocation of resources is an argument that sometimes surfaces in the discussion of the PVS. Some studies indicate that the increased use of integrated trauma services do not cause an increase in the number of patients who survive with severe disabilities124. However, there are data that indicate that reduced mortality after severe head injury will increase demands for rehabilitation services.125 Beresford (1997) notes that although the courts have not focused on this or used it as a rationale for withholding nutrition and hydration thus far, it is a fact that health care resources are sometimes limited, are expected to become more so, and that discussions of the fiscal impact of providing nutrition and hydration for patients in the PVS will be part of ongoing discussions on this topic. The influence of fiscal impact may well already be a factor in some decisions on the hospital level. Beresford states that one option for cost cutting would be to apply "Oregon standards" in which no public money would be spent on those in the classification of VS.126 The current drive to contain health care costs could result in fewer resources being available to care for those with severe and permanent neurological disabilities. In this context, it is unlikely that without a major change in the way people think of those with very severe disabilities, that the public will resist skimping on care for the severely brain injured.
"Life expectancy" for the patient in the PVS depends very much on the attitude of the family and clinicians i.e., how long the patient is allowed to live rather than how long he can live. A decade or so ago, survival of the patient in the PVS to 10 years was unusual, now it is common. The longest survival on record is a woman in the US who has been vegetative for 40 years.127 Little data exists that can be used in predicting how long an individual patient will or can live in the PVS. In one study, Strauss, Shavelle and Ashwal (1999) found that life-expectancy in the PVS was 10.5 additional years +/- 2 years for a 15 year old patient who has been in the VS for 1 year and 12.2 years for a 15 year old patient who has been in the VS for 4 years.128
Andrews (1997) asks about another dilemma for caregivers, which is the statistical level at which the risk of a wrong decision can be accepted. For instance, if the risk of the patient emerging from the VS after 4 years is hypothetically 1 in 10,000, should the 9999 be tube fed to avoid the risk of wrongly withdrawing tube feeding in the wrong person? What if the risk is 1%, 5% and so on? And finally, if these decisions to withdraw apply to some patients in the PVS, do they apply to all such patients? By what justification will families (or patients themselves using advanced directives) request nutrition and hydration if courts are routinely ruling and medical experts are routinely deciding that such care is "futile", not in the patients "best interest", or that the patient in the PVS is already "dead"?
The five main problems intrinsic to the withdrawal of food and water from living, albeit minimally or completely unaware persons are: (1.) The withdrawal of medical treatment and ordinary care from patients in the PVS has historically served as a galvanizing point and a legal backdrop for the "right-to-die" movement in the U.S. and elsewhere. (2.) Upon withdrawal of ordinary care (which includes food and water) from these patients, the diagnosis of PVS becomes an obligatory death diagnosis. (3.) The withdrawal of food and water from patients in the PVS will inevitably be extended to other vulnerable and devalued groups, such as those in the MCS. (4.) Using an argument of "cruelty", the "right-to-die" movement will advocate for quicker and more efficient means of killing the patient in the PVS and other patients, and (5.) Allowing the killing of patients by withdrawal of food and water terribly complicates the valid and necessary determinations regarding optimal care of the patient in the PVS and confuses reasonable termination of futile medical treatment with the immoral and inexcusable deliberate taking of life.
Unfortunately, as was vividly demonstrated in the Wendland case, many bioethicists are enthusiastic supporters of withdrawing food and water from even patients who are admittedly conscious. Attorney Wesley Smith, among others, has been very critical of the role of bioethicists in justifying the withdrawal of ordinary care from helpless human beings.129 Even Christian bioethicists do not agree on whether tube feeding may ethically be removed from persons in the PVS. Some seem all too willing to acquiesce to the prevailing cultural view that such "medical treatment" is "futile".
Andrews (1997) discusses the (secular) ethical arguments in favor of and opposing ending tube feeding in the PVS. First of all, it would appear that the overwhelming majority of people do not want to be kept alive this way, or so they say when they are healthy. As previously mentioned, this has been shown to change over time and by circumstances. Some feel that to have tubes inserted and all personal functions dealt with by others is an assault on the patient's dignity. Others maintain that prolonging such a meaningless life is failing to show respect for the individual. It is commonly argued that to prolong such meaningless life is futile treatment and therefore unethical. It is also argued that families go through the trauma of losing their loved one as a person, but are unable to grieve because the "body" is still present. Arguments in favor of prolonging the life of the patient in the PVS include for instance, that all life is of value and life that is lost is lost forever. Another argument is that we cannot be absolutely certain that the person is unaware, especially in view of reports of misdiagnosis and lack of expert assessment of patients. Some who oppose removal of tube feeding also point to cases of late recovery, which has been known to occur up to 5 years after the brain injury. Some also express concern that permanency of brain damage is based on present day treatment whereas there may be new developments in the near future such as drugs, electrical stimulation of the brain and brain stem that may help to release some unrecognized potential for recovery.130
Christian bioethicists disagree on whether food and water may ethically be withdrawn from patients in the PVS and use a number of arguments to arrive at their various positions. The Ethical And Religious Directives for Catholic Health Care state, "There should be a presumption in favor of providing nutrition and hydration to all patients including patients who require medically assisted nutrition and hydration, as long as this is of sufficient benefit to outweigh the burdens involved to the patient."131 Other Catholic documents, including the most authoritative to date, a papal statement issued on October 2, 1998, have been worded even more strongly in favor of providing food and water to the patient in the PVS.132 However, a number of Catholic ethicists, such as Kevin O'Rourke, who was mentioned during the discussion of the Cruzan case, state openly that withdrawing nutrition and hydration from the patient ("accurately diagnosed") with PVS is morally justified and is most in keeping with Catholic teaching. Some have even gone so far as to argue that patients in the PVS are "no longer persons".133
Michael Panicola, ethicist for the SSM Healthcare System in St. Louis MO, sides with O'Rourke.134 In a somewhat contradictory discussion of withdrawing nutrition and hydration from the PVS patient, Panicola appears to argue that patients in the PVS can still experience "burdens" although they cannot any longer experience "goods" (i.e., benefits). He maintains that we exist in order to experience life, engage loved ones, interact with others, participate in society, and pursue personal interests, at "at least a minimal level". While acknowledging that all these things are hopefully part of human life, this contradicts a traditional Christian understanding of human life, the purpose of which is to glorify God, not simply to engage in activities, no mater how important or pleasant. (although how and in what conditions one may still glorify God is another contentious subject -- however, this is the common Christian understanding of the purpose of human life and not the various activities in which we engage). Panicola asserts that "one may feel that one is killing the patient by withdrawing medically assisted nutrition and hydration, but the ultimate cause of death is the underlying pathology that made the nutrition and hydration necessary in the first place". Despite these ethical gymnastics, however, the "pathology" did not make "nutrition and hydration necessary", only the means now being used to deliver it. For in fact food and water had been necessary for that person from the moment of conception, first delivered in the womb via the maternal placenta, then by baby bottle or breast, followed by spoon-feeding, then self-feeding. The death of a PVS patient from starvation/dehydration cannot be reasonably justified on the basis of the kind of "double effect" language that Panicola attempts to use for the simple reason that in order to qualify as "double effect", the bad outcome cannot be intended. Mclean (1999) points out that if a patient in the PVS is nourished and hydrated, there is an obvious intention that he or she should live. If that nutrition and hydration is withdrawn there is an even more certain intention that he or she should die. Those who withdraw nutrition/hydration from PVS patients would be both surprised and displeased if doing so did not shorten their life in the PVS! Common sense makes it evident that the patient is in fact being helped to die, yet distaste for that fact leads those who promote this view to engage in a kind of sophistry in order to justify the activity.135
Rae (1995) rejects the notion that patients in the PVS are no longer persons, but agrees that "medically-provided" food and water may be withheld from them because of its technological nature, and the right to refuse medical interventions. He further states that such care is "not necessary for patient dignity and comfort, nor is it symbolic of basic human care".136 Kilner (1992) criticizes the terminology used to describe the patient in the PVS (i.e., "vegetative") as "an inappropriate characterization of something created and living in the image of God". He goes on to say that "Employing permanent unconsciousness as a criterion either for death or for an unacceptable quality of life is, in any case, unwise until this condition can be diagnosed with certainty...the death of a living person should not be intended even if the person's quality of life is low".137 Meilander (1996) argues compellingly against a "functional" view of personhood, such as Panicola's. He states that "in the last several decades it has become common to define 'personhood' in terms of certain capacities. To be a person, one must be conscious, self-aware, productive. The class of persons will widen or narrow depending on how many such criteria we include in our definition of personhood. But in any case, the class of human beings will be wider than that of persons." He goes on to state that to the contrary, personhood is not something we "have", but rather something we "are".138 This is an "essential" view of personhood, which Meilander describes as more consistent with Romans 8:28, one for whom the Spirit of Christ may still intercede "with sighs too deep for words". Dependence, therefore, is simply part of the story of a person's life. It does not change the essence of personhood. Persons in the PVS are among the weakest and most needy members of our community. They do not lie outside it. Likewise, Meilander rejects the reasoning that death is not "intended" when nutrition and hydration are withdrawn from the patient in the PVS. The "burden" at which we are taking aim in this case, is not the "treatment", but the life itself. If the treatment itself carries no excessive burden (even though the patient's life itself may be burdensome), and if the treatment benefits the life the patient has (even though, given alternatives, we would not desire that life), Meilander asserts that we ought to choose life both for ourselves and others.139
Many of the arguments surrounding the food and water issue as it pertains to severely brain-injured patients center around preventing the withdrawal of such care from patients who are very minimally conscious, who may recover consciousness or who are conscious, but due to their disabilities cannot make that known. It seems more difficult to articulate the reasons why withdrawing food and water is wrong even if we acknowledge that a patient in the VS will, in all likelihood, not recover consciousness. However, it is necessary to do just that if we, as Christians are to draw an effective "line in the sand" based on our scriptural beliefs. Acknowledging that diagnosing the PVS is very difficult, if possible at all, Father Peter Ryan has persuasively given several arguments in favor "artificial nutrition and hydration", even in the case of likely "permanent unconsciousness", that deserve consideration from every Christian:
Belief in the special worth of human life is at the heart not only of the Christian faith, but of civilized society. It has been said that this is a fundamental value of civilized society on which all others are based, and is the foundation of both law and medical practice. The intentional taking of innocent human life is therefore an offense which both God and human society condemn most strongly. Despite the euphemisms that have been coined to disguise both the action and the intentions behind it, the fact remains that removing nutrition and hydration from the patient in the PVS is contriving an end to an otherwise sustainable life.
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