Proverbs 6:16-18 states, "There are six things the Lord hates, seven are an abomination to Him...". Among those things listed as hated by the Lord are "hands that shed innocent blood" (NASB). Most Christian traditions, especially the more conservative and orthodox, would join in: (1.) rejecting a consequentialist ethic, one which holds that the morality of an action turns solely on its consequences, (2.) in recognizing the sanctity of human life, (3) in recognizing the stewardship responsibility toward the helpless and (4) in appreciating the danger of the "slippery slope".
The apostle Paul taught that certain conduct is intrinsically wrong and should be avoided regardless of any good consequences that may come of it. In short, a good end does not justify a bad means: evil may not be done that good may come of it.141 Even if we define an end to a mere "vegetative" existence as a good, but obtaining that good requires us to take a life, by act or omission, then that act would be proscribed. That permanent unconsciousness is a dismal state is not commonly disputed. However, from a Christian perspective, it does not follow that being in a dismal state is license to end life.
But should the Christian define the end of a life, however diminished, vulnerable, and marginal, as a "good"? We know that earthly human life is not the ultimate good, to be grasped after at all costs, because in the Christian tradition we are "willing to be absent from the body and to be present with the Lord".142 However, it is clear that this absence and presence is to be controlled by the Lord, for it is only He who knows each life and the end to which it is His will to bring it. As developed in Christian thought, the concept of "sanctity of life" holds that as life is a gift from God, it is to be cherished. God gives meaning to suffering (even that we might view as "purposeless"), values the individual and gives worth to each person because we bear His image.143 Life is a 'basic' (essential) good and not an 'instrumental' (functional) good, a good in itself rather than a means to an end.144
As mentioned in the previous section, when a patient is in the PVS, some theologians see withdrawal of food and water as a form of killing, while others see it as a legitimate omission of 'extraordinary' means.145,146 According to a sanctity of human life ethic, omission of food and water must be rejected when it is directly intended to bring about death. It is clear that in the case of the patient in the PVS, death is precisely the outcome intended.
Since God designed our bodies to require food and water throughout our lifespans, whether we are sick or well, disabled or not, and since we have as Christians, a stewardship responsibility to provide for those who cannot do so for themselves, it would seem clear enough that in the Christian stewardship tradition, the decision in favor of nutrition and hydration would be strongly favored.
If innocent human life is not universally protected, certain individuals and classes of individuals will inevitably fail to meet "some ambiguous standard of what it means to be human".147 Once this happens, it becomes easier and easier to classify successive classes and individuals as "not worthy of life" or as in the case of PVS, and now the MCS, as "better off dead".148 The conspicuous erosion of regard for human life is evident in our own modern culture, particularly over the past three decades, which have seen the widespread acceptance of abortion as well as at least certain forms of euthanasia. In the absence of recognition of the danger posed by the inclination to follow the 'slippery slope', it is difficult to imagine when the societal brakes will be applied to discussions of deliberate medical killing.
Those expressing the view that the withdrawal of nutrition and hydration from the person in the PVS is the beginning of the "slippery slope" have been accused of scare mongering. However, as has been demonstrated, there have already been attempts as well as successful efforts to withdraw nutrition and hydration from those who are admittedly not in the PVS, but rather in the "minimally conscious state". Once that is well accepted, one can easily think of other groups that are at potential risk, such as the demented elderly and others with severe disability.
Withholding food and water, however objectionable, is in reality only a "way station" of sorts to the end destination of more efficient execution. As Bart Tigerman, a euthanasia supporter asked, "Why in heaven's name does society allow slow, painful starvation when it condemns compassionate death assisted by a physician?"149 Making liberal use of animal euthanasia imagery, "right-to-die" activists have already largely succeeded in convincing the public that "we wouldn't do that (allow such sub-optimal life) to an animal, how can we do it to a human being?" It is generally not legal to deliberately starve an animal to death. Since it is not allowable to starve and dehydrate an animal in order to end its life, but rather death is brought about by quicker means, it will seem much more forthright and humane to do the same for humans. The threat posed to other groups of vulnerable and devalued persons is grave. There is a recognition that persons labeled "unconscious", "unaware", and "unresponsive" may appear to share many characteristics with persons labeled, for example, "profoundly mentally retarded". The danger of the "slippery slope" argument, often rejected as absurd by those who favor withholding nutrition and hydration, is self-evident. If it is acceptable to deliberately starve and dehydrate one severely disabled person, then it is or soon will be by definition acceptable to do so to another in a similar condition.
It must be mentioned that in this postmodern age, the Christian perspective is not the primary one held by the majority of individuals. In fact, at least some of its facets seem strange and unfamiliar to a culture accustomed to speaking in terms of ease, convenience and high expectations for personal happiness. It is important for the Christian who seeks to impact the secular culture to understand the assumptions that underlie its perspectives. Some of the main features of the dominant secular perspective include (1.) Consequentialism/Utilitarianism, (2.) A quality of life ethic, (3.) High regard for personal autonomy and (4.) Ethical subjectivism.
Many people today subscribe to an ethic of consequentialism, although very few would be able to articulate it and fewer still have examined all its implications. "The greatest good for the greatest number" is an appealing idea, at least on its surface. An "all's well that ends well" ethic appeals to pragmatism and common sense. Few people would describe a life lived out in the PVS as a "good end" and some would point to the expenditure of resources on these patients as diverting needed care from other individuals likely to benefit more.
Although consequences matter to the Christian, what makes an act morally good is not merely the outcome, but rather obedience to scriptural commands, such as the command to love one's neighbor and respect for the sanctity of human life. Therefore, the Christian must reject consequentialism as an adequate moral defense of taking life.
"I wouldn't want to live that way" is a common declaration heard when discussing the PVS. In fact, the utterance of this very phrase has been the underpinning of a number of legal cases in which food and water have been withdrawn. (See Cruzan and Busalacchi cases). Quality of life is very important to most people today, and we have high expectations for our bodily health. When our quality of life doesn't measure up, many consider medically-assisted dying. We are only too willing to project this quality measurement onto others whose lives seem to be lacking in "quality".
The Christian is concerned with quality of life, but quality of life only makes sense in a Christian perspective when it is placed against the backdrop of sanctity of life. The Christian perspective is concerned with morally acceptable ways of improving each patient's quality of life, but avoids an ethic that would judge individuals with disabilities or limited potential as not worthy of care or respect.
Quality of life is central in the debate about the benefits of continued treatment of persons with severe impairments of consciousness. Phipps and Whyte (1999) note that "Quality of life consists of both objective and subjective factors. Objective factors include such things as social support, employment, mobility and the ability to communicate with others. For patients in the [PVS and] MCS, quality of life would be rated as poor by these objective measures. The subjective dimension of quality of life can only be defined by the person and addresses the questions is "this life of value to me?" and "do I derive meaning, satisfaction, or pleasure from my life?" Although subjective quality of life is associated with objective quality of life, the two are not synonymous. Also, a person who loses an objective source of quality of life (e.g., mobility) may redefine the importance of various factors contributing to his or her subjective quality of life. Persons who remain in a vegetative state are not thought to be capable of awareness of self or of their environment and by extension, would not be able to experience any quality of life. However, the person in the MCS does appear to have some experience of self and the environment. The person in the MCS has at least the potential for both positive and negative experiences.
The truth is, however, that we know very little about the quality of life from the perspective of the person who is minimally conscious.150 Phipps and Whyte (1999) recommend that a research agenda be undertaken to better identify approaches to decision making with persons who are minimally conscious. They recommend that there be four components to this agenda 1.) Address the concerns of individuals who a minimally conscious, 2.) Their families and caregivers, 3.) Public knowledge and attitudes and 4.) Economic implications of care for these patients. Ideally, they believe, we need to attempt to understand how severely brain-injured people view and appreciate their own life experiences and to develop and test techniques to elicit preferences. In the Christian tradition, this would include assisting them in whatever ways possible to improve their lives, not ending their lives due to poor perceived "quality".
A high regard for autonomy is a hallmark of our age. "What right do you have to stop me from disposing of my life [doing with my body] as I see fit?" is a common defense of the practices of assisted suicide and abortion. In fact, the lack of autonomy itself is so undesirable in the secular worldview that its absence is often seen as sufficient reason for ending life. Since patients in the PVS cannot be said to have autonomy, the secular perspective would view such a deficiency as unacceptable.
In the Christian view, there are limits to human autonomy. We are dependent on God and interdependent with each other. The biblical precepts of loving our neighbors and stewardship limit our autonomy. In the Christian worldview, the vulnerable are more, not less deserving of our care and consideration. We are our brother's keeper.
Ethical subjectivism holds that morality is determined by the individual. Expressed in its popular form, ethical subjectivism says, "What's right for me is right, and what's right for you is right".151 Therefore, in this perspective, there is no room for criticism of the moral choices of others. Families of patients in the PVS would be considered to be merely doing what is right for their family when they make a decision to withdraw food and water.
The problem with ethical subjectivism from a Christian perspective is that morality is not determined by the individual, or by groups of individuals, but by God. What is right is what God says is right, not what we say is right. Therefore, if deliberately taking innocent human life is wrong by God's standards, then we are obligated to reject it.
We inadvertently reinforce a negative attitude toward these patients in the words we use to describe the severely disabled. In addition to its being a dehumanizing label, the term PVS has come to imply a hopeless situation without possibility of recovery, which is not consistent with what we know about severe brain injury. Kilner (1992) states that the term "in a vegetative state...has demeaning connotations and invites inadequate treatment, in violation of the life and justice guides as well as the mandate to love."152 The dehumanizing term "persistent vegetative state" should be relegated to the dustbin of other offensive terms, and adequate terminology that more accurately describes the pathology without dehumanizing the person must be sought.
I place into consideration the term "Severe Cortical Impairment" (SCI), which focuses on the brain impairment rather than on a value judgment regarding the person themselves, can vary in degree, and accurately expresses the lack of specificity of the condition itself. The term does not imply hopelessness and places the focus on rehabilitation. The term could easily be combined with the duration, e.g., "SCI of 4 months duration", and in the interest of further specificity, could be combined with a rehabilitation progress score, which will be discussed in the following section.
In our reimbursement-driven health care system, it requires no imagination to envision a day very soon when insurance companies will altogether cease reimbursement for tube feeding products in patients (often incorrectly) diagnosed with "PVS". The withholding of food and water will then become for all practical purposes, a prohibition of nourishment and hydration in these patients. Predictably, there is now a movement for healthcare providers to obtain judicial intervention against families who demand "medically inappropriate" life support for incompetent patients.153 Christians must be advocates for those who cannot speak for themselves. We should work through all available avenues, including political and legislative, to ensure proper care for these extremely vulnerable patients.
It has already been mentioned that the care of the very severely brain-injured patient varies widely from center to center in the US. Some physicians who make "pronouncements" that the patient is "in the PVS" are not even neurologists. Many families do not wait 12 or even 3 months before seeking to terminate nutrition and hydration. Due to the nature of the disorder, along with the extraordinary diagnostic and prognostic difficulties, those diagnosing very severe brain injuries should be neurologists with advanced skills in diagnosis, extensive knowledge of the current research literature and special training in rehabilitation. Freeman (1996) proposes caring for these patients in a specialized coma care unit, much as heart attack patients are cared for in CCU's.154 The protocol for diagnosis must be standardized. Freeman (1997) points out that the physician must be prepared to involve the families and nursing staff and paramedical staff so that all may provide the insight which they have obtained in their time with the patient.155 The appointment of a medical "ombudsman" in cases of suspected PVS or MCS may help to safeguard patients' rights. Medical professionals should have enough humility to admit uncertainty when it exists, as it certainly does in the case of PVS. When the term "persistent vegetative state" is used, what the family most often hears is "vegetable". Pretending to certainty and using such terms creates an atmosphere that leads to tremendous pressure to discontinue nutrition and hydration and medical treatment. And finally, if healthcare professionals are frequently missing subtle but important signs of consciousness, who, exactly is "unaware"?
Freeman (1997) compares and contrasts medical with legal decision-making in the case of the patient with very severe brain injury. Although medical knowledge is lacking in the legal profession and this is admittedly a serious problem, the legal system actually has more safeguards than does the medical system for protecting vulnerable people, such as those who are severely brain-injured.
Freeman compares the medical vs. the legal approach to a judgment as follows:
| Medical Profession | Legal Profession |
|---|---|
| Nil | advocate/attorney |
| Nil | jury |
| Judge (physician) | judge |
| Nil | protocol |
| Nil | appeal mechanism |
However, courts are, generally speaking, poor places to decide medical matters, as most of the participants have little or no knowledge of medicine. This is becoming more widely recognized in other areas as well, such as malpractice law. The determination of the course of treatment for a severely brain-injured patient might better be handled medically with possible input and oversight from a human rights official of the court if necessary. Essentially, this is the reverse of what is happening now in the high profile cases in which parties do not agree. In many cases where there is family and medical agreement, the matter never reaches a court. Routinely having a court-appointed human rights officer who is notified in the event that discontinuation of nutrition and hydration is proposed would help to protect these "low profile" endangered persons. In the "high profile" cases, doctors are the minority in the decision-making and lawyers are in the majority. In the common undisputed cases, the reverse is true. A balance must be sought that protects the interests of the patient -- physicians doing what they are trained to do, which is caring for patients, and attorneys stepping in only as advocates for the rights of the individual -- something they are trained to do. These cases cannot continue to be decided in an atmosphere of medical incoherence and misdiagnosis -- it is too dangerous for brain-injured persons who are minimally responsive, yet not in the PVS and for those who could potentially recover. Doctors can be faulted for their ethical ignorance and "clinical incoherence" regarding the PVS. These factors must be addressed without delay.156 All parties need more education. Otherwise, as society increasingly accepts the premise that the "right to die" turns on the question of quality of life, nursing home residents, the retarded, the mentally ill, the homeless, and others who have a low perceived quality of life are in danger of having their suffering "compassionately" ended too.
In order to successfully engage a postmodern, "post-Christian" culture, we may need to base our advocacy for the patient in the PVS on a human rights foundation, which can be embraced by individuals of diverse worldviews. Put quite simply, to deny ordinary care (in this case food and water) to a person because he is more seriously brain damaged is a violation of human rights. It should be obvious that all people, even the most severely disabled, have human rights which do not and should not depend on a family's or society's wishes. We depend upon both the medical and the legal systems to help protect the vulnerable and helpless among us. Legitimate elder, child and spousal abuse laws along with guardianship regulations are generally considered protection, not unwarranted government intervention. 85,000 Americans, including 35,000 nursing home residents require tube feeding each year. In contrast, there may be an estimated 25,000 people in the so-called PVS. It is discriminatory to withhold something which is considered ordinary care for conscious or less severely disabled people from another group of people with more severe disabilities. In this day of heightened awareness of the rights of the disabled, it is highly ironic that the most severely disabled are objectified and disposed of. Legislation modeled on statutes such as the Americans with Disabilities Act (ADA) or some similar legislation must be pursued to forestall further erosion of the human rights of the disabled.
We must also give consideration to nurses and other health care professionals who must care for patients who have been deemed "not worthy of life". Consider the following passage from "Personal Views" written by Frederick Nenner, director of social work and member of the ethics committee at Lutheran Medical Centre, New York regarding an elderly man in whom the family and doctors had decided to remove nutrition and hydration:
"The nurse places a damp gauze pad to his lips and he sucks at it. He appears to be hungry and asking for food. The doctors say this is a reflex. The aide sees greater levels of consciousness: a blinking eye when a question is asked, tracking when she moves from one side of the room to the other. The doctor observes and reports random and non-purposeful movement. The family stays away."157
This quote reflects an all too common scenario resulting from the decision to withdraw nutrition and hydration. Nurses, who may disagree with the medical staff, are the ones who have the burden of moment-to-moment personal care of the patient. Families, thought to be acting in the "best interests" of the patient, often stay away from the bedside once the decision to terminate feeding and hydration is made. Often family members are in conflict with one another regarding the decision to end care, as in the St. Louis case of Steven Becker in 2000,158 which adds to the distress of caregivers. Objecting staff get little support -- or outright opposition -- from entities such as hospital ethics committees, which too often simply rubber-stamp decisions to end nutrition and hydration.159 Staff members must be supported in their roles as caregivers and patient advocates within the healthcare system. Often ethical dilemmas are really communication problems in disguise.160 Nurses and physicians must be given the tools and support to sort out communication and ethical problems and to handle them in a way that protects vulnerable persons.161
The Brain Injury Unit at the Royal Hospital for Neuro-disability in London is the only specialized unit for vegetative patients in the UK. Gill-Thwaites (1997) reports on the use of the Sensory Modality Assessment Rehabilitation Technique (SMART), a tool for assessment and treatment of patients with severe brain injury in a vegetative state that was introduced in 1988 and further refined as a result of the experience of the occupational therapy staff at the Royal Hospital for Neuro-disability. Although all 30 subjects in this report were diagnosed as VS on admission, the SMART assessed 6 subjects not to be in VS within 2 to 4 months from admission.162 The SMART is a categorization of levels of function. The SMART provides a hierarchical categorization of all the observed behavioral responses seen in patients diagnosed as in VS. The scale categorizes observed responses to a sensory stimulation program involving visual, tactile, auditory, olfactory, gustatory stimuli and the past level of wakefulness as well as functional motor and communicative ability. The SMART is designed to provide quantitative data regarding the patient's cognitive function and potential awareness. However, unlike other assessment scales the SMART also provides qualitative information on the level of response to sensory stimulation which is comparable across sensory modalities and clearly identifies evidence of awareness.163
The SMART hierarchical scale assesses responses at five levels -- no response (Level 1) through reflexive, withdrawal, localizing and finally discriminating response (Level 5). A consistent response at the discriminating level indicates awareness and emergence from the VS. For instance, for the auditory modality, level 1 is no response, level 2 indicates a reflexive response which might be repetitive blinking, startled or reflexive facial expression to audio stimulus from crackers, blocks or a whistle. Level 3 is a withdrawal response which includes blinking and the habituation to loud sound or movement of the head away from the auditory stimuli. Level 4 is a localizing response which includes turning the head or eyes towards voice or sound. Finally level 5 is a differentiating response which includes ability to follow basic command such as 'close your eyes' or 'press the buzzer once' or to differentiate by pointing to a named object, picture, word, shape color, letter or 'yes' or 'no' card. A consistent response at level 5 in any modality (the ability to follow verbal or visual commands) demonstrates awareness and therefore emergence from VS. The system facilitates the identification of the best response for each modality and clarifies the initial point of awareness. The authors state that the SMART is a sensitive tool which attributes a maximum score of 5 out of 5 for demonstrating only one consistent response to verbal commands. This is important since the patient may be cognitively intact but their ability to respond may be impacted by their severe physical disability. The SMART therefore provides a clear indication of the patient's best functional response.164
In another study using the SMART, of 30 patients, 7 emerged from the PVS during the study period, and by the time the data were analyzed, an additional 6 had emerged. Interestingly, a x2 (Chi-Square) test of this study's data indicated that there was no relationship between whether the damage arose from trauma or not and whether the patient emerged (at some point) or did not emerge. Wilson and Gill-Thwaites (2000) state that "recovery from the PVS does not appear to be a smooth continuous process; those who remain in a vegetative state can show improvements and those who do recover from VS may show little or no improvement or even deterioration at times."165 The study found that patients who recovered from the VS did show quantifiably larger improvements (over the 2 month period of the study), as indicated by changes in SMART scores, than those who did not later emerge were capable of producing during the study period.166
Two cases described by Gill-Thwaites illustrate the need for establishing a correct diagnosis. One was a patient diagnosed as being in VS by experienced physicians for the previous 7 years. Following assessment on the SMART he was able to use small motor function to operate a buzzer to select letters to enable him to write letters to his wife and communicate his feelings. The other patient was referred 2 years post injury as "vegetative" following extensive assessment at a specialized neurological unit. He was subsequently assessed to be out of VS by the SMART within one week of admission and was able to operate a computer to spell words and form sentences. He has since been able to recount his statement of events leading to his injury.167
Wilson, Gracey and Bainbridge (2001) have demonstrated that substantial cognitive recovery from the vegetative or minimally responsive conscious state is possible, despite reports from the literature that recovery of consciousnesses rare in people whose levels of awareness are severely reduced for more than 3 months following non-traumatic (i.e. worse prognosis) brain injury. They relate the following poignant communications received from a patient, "Kate" who had been diagnosed in the "vegetative" state or "MCS" as a result of a brain infection for approximately 6 months. During that time she was able to open her eyes and showed a sleepwake cycle, but she could not communicate, respond to situations or show evidence of thinking. She has made some recovery in rehabilitation and despite persistent severe physical disability, she reports enjoying reading, playing games, listening to music and reports hope for the future. She communicates regularly by letter and her correspondence with the authors is as follows:
Oct 2000: "Thank you so much for the assessments they treated me as if I was stupid in (hospital). My stay there was absolute hell they never told me any thing. They used to suction me through my mouth and they never told me why or what it was called they have never told me about my trachy [tracheostomy]. I am lucky I am with it and have a good memory so I could work it out. I don't want them to do it to anyone else. They have learnt a lot from me already, but I think telling people what you are doing is very important. I can't tell you how frightening it was especially suction through the mouth. I tried to hold my breath to get away from all the pain. They never told me about my [feeding] tube I wondered why I did not eat."
March 2001: "I have really been thinking about the thing you are going to write and there are things I think are important to say. (1) when you are in hospital put up a sheet say your are in X (and say what town). They did this for me, but they took it down to [sic] soon. Say you have had X. I never knew so it was really scary. (2) Just because you can't talk does not mean you are stupid. Tell them things every time you do it. I was never told about suction and it used to make me gag. I was so scared of it that I felt food go the wrong way, but we did nothing my mum knew how scared I was of it and I nearly died. So you must tell them everything especially if it hurts. I had five hearing tests, but they just mean you can hear noise. As all I could hear was noise not words (3) If you are a doctor don't laugh. The laughed with me and I thought they were laughing at me. I found it very offensive."168
McMillan (1996) of the Wolfson Rehabilitation Center in London describes a systematic neuropsychological assessment technique for use with severely physically disabled people who may also be severely brain-damaged, in an incomplete locked-in state, or potentially in VS. In the case described, "expert opinion" had been that "artificial" feeding by gastrostomy tube should be terminated because the patient was functioning at a level little beyond the VS, her quality of life was poor and she was unable to form a view about her present or future circumstances. By the use of this technique it was demonstrated that the patient was sentient, though impaired, and that her own wish at the time of the assessment was to continue living.169 In a five-year follow-up published in 2000, McMillan reports that as before, this patient consistently reports a wish to live.170 It should be noted that prior to her accident, she had followed the widely publicized case of a man in the PVS and had given a "verbal advanced directive" to the effect that if she was seriously injured in an accident she would not wish to continue living. Her consistent wish to live post-injury supports the view that beliefs of this kind, which are common pre-injury and may be expressed verbally or in writing as an advanced directive, can change radically and must be treated with caution post-injury.171 McMillan recommends that "decisions about euthanasia in brain injured people who are not in the vegetative state must not be made on the basis of advanced directives, on assumption about quality of life and will to live inferred from the degree of dependency, on the possibility of pain or low mood or on the basis of brief clinical interviews. Nor can it be assumed that there will be no further improvement in function in severely disabled people only 2 years after traumatic brain injury".172
Neither the SMART nor any other standardized rehabilitation assessment tool is routinely used in severely neurologically impaired patients in the U.S. Unfortunately, the assessment and rehabilitation of these patients is often haphazard at best. This has obvious implications for the outcome of these cases. If we are truly concerned about the PVS patient's "best interests", doesn't it make sense that we would expend some effort effectively assessing and potentially rehabilitating the patient to the point where he can make his interests and wishes known? If this were done systematically and consistently, some and perhaps a substantial number of ethical quandaries would potentially disappear. While ethical deliberations are still necessary, concrete rehabilitative actions that benefit these patients may provide the best outcome while helping to shape attitudes toward the severely disabled in ways that mere ethical hand-wringing cannot.
Christians must be proactive in establishing rehabilitation units for the care of vulnerable neurologically-impaired patient where intensive therapy can given as appropriate. We must act as human rights advocates for all devalued persons. A healthcare sub-specialty must be developed in the intensive rehabilitation of the severely brain-injured patient. This will be difficult due to societal perceptions and cost issues, but death cannot be reduced to simply a cost issue. Christians must fill this gap if we truly believe in the sanctity of life.
The headlong rush to dehydrate and starve patients in the PVS distracts from the vital issues of proper care for these and other vulnerable patients. A dead person, after all, requires no care. Studies of these patients clearly show that some can and do improve, although we cannot yet predict with certainty which patients will improve, how many patients will improve, how much any one patient will improve or how quickly. If the diagnosis of PVS carries with it the obligation or significant pressure to cease feeding and hydration, we will never learn the answers to these questions. We will never develop beneficial treatments and better care approaches, because there will be no one left to benefit. Furthermore, there are valid and necessary questions regarding genuinely futile medical care in this condition, as in all other conditions. Killing the patient negates the need to seek answers regarding futility, as the patient himself has become "futile".
We must work to remove the "hermeneutic of suspicion" that now exists toward those who want to maintain nutrition and hydration for the patient in the PVS. The "burden of proof,' should always be on those who want to remove it, but instead the burden seems regularly to be placed on the patient (who cannot communicate) or on the family members who wish to maintain care, who often receive little encouragement in their decision from the medical or legal systems. If this "burden" is on the other side, as it ostensibly is in cases requiring "clear and convincing" evidence -- supposedly a strict legal standard -- it often seems to be a light one that is too easily thrown off.
As Christians, we must have something to offer a hurting and confused world other than platitudes and prohibitions. The nihilistic approach to the patient should be immediately replaced by a "rehabilitative/redemptive" approach. In the case of the PVS, this could best be expressed through our caring example toward these patients. A beautiful illustration of how this could be carried out is found in the description of the care provided in the Clifton Ward at the previously mentioned Royal Hospital for Neuro-disablity in Britain. The ward deals with patients diagnosed as being in the PVS, referred from hospitals all over the country. All admissions undergo an intensive course of assessment and a stimulation program over six weeks by a team of nurses, physical therapists and occupational therapists. The ward has had considerable success in detecting awareness and in finding mechanisms with which patients in the PVS can communicate to some degree. Hospitals that don't have the staff or the skills to fully assess and treat these patients regularly turn to this center for assistance.
Summing up their approach, ward manager Sandie McNeill said, "We never give up on a patient here. Who are we to say that somebody has no quality of life?"173 The contrast between the way the world generally looks at PVS and this view could not be more marked. May the Lord graciously help us to follow examples such as this and to reject false "solutions" that eliminate not the problem, but the person.
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