Volume 12, Issue 11,
pp. 1684–1688 , November 2011
American Academy of Pain Medicine.
Respecting the Will of the Patient:
Between Illusions and Realities
PETR MUZNY PROF. JUDR
Respect for the wishes of the informed and capable patient constitutes a fundamental legal and ethical principle, accepted to a large degree in the majority of democracies for going on 30 years now. In Switzerland, the right of individuals to self-determination seems to enjoy an even stronger recognition than in other states, the acceptance of assisted suicide being indicative of this. The right of individuals to self-determination is laid down in Swiss law in Article 10 paragraph 2 of the Swiss Constitution, dated April 18, 1999, as well as in Article 28 paragraph 2 of the Civil Code. They respectively provide that “everyone has the right to personal liberty and in particular to physical and mental integrity and to freedom of movement” and “an infringement is unlawful if it is not justified by the consent of the victim, by an overriding public or private interest, or by law.”In other words, no infringement of the physical integrity of an individual is possible without his consent.It is true that the law lays down exceptions under which it is possible to infringe the liberty of the individual, i.e., when an “overriding private or public interest” occurs. Such could be the mandatory vaccination of individuals against a contagious virus that poses a threat for the entire population. However, the possibility of limiting a patient's rights does not exist when the patient's choice only affects himself. Take the example of someone who refuses chemotherapy at an advanced stage of his illness; the effects of his choice are limited to himself, his family, and his relatives.This respect for the individual's autonomy has been clearly expressed by the Federal Court, which serves, in a way, as the official and supreme interpreter of Swiss legislation. It ruled that “The right of a patient to self-determination is extremely broad, and encompasses for the one concerned the refusal of any curative practices, even if this leads to death. In effect, personal liberty grants the patient the right to live through his illness in the way he sees fitting.”Thus, in this matter, the rules are unequivocal. Nonetheless, the opinions, declarations and even the practices on the part of health professionals regularly challenge this legal and ethical reality in such a way that gives the impression that the right to self-determination is only an illusion, a mirage, unattainable for those depending on it. This is by all means what was revealed in a study carried out relatively recently and published in the journal Pain Medicine, regarding a number of ethical positions expressed by caregivers at the University Hospitals of Geneva (I).We would like to offer the reader a reality check, especially in the light of a critical commentary written by an American ethicist in answer to that study, and published in the same journal  (II).
I. Time of IllusionsThe report of the research of Cahana et al. is based on a statistical study carried out by doctors and ethicists from the University of Geneva with caregivers from the University Hospitals of Geneva.This study was made in the course of a bioethics seminar in which 29 anesthesiologists, 41 surgeons, 21 surgical nurses, and 33 nurse anesthetists participated. The same question asked before and after the seminar was a classic case involving a patient's right to self-determination:A 40-year-old woman, one of Jehovah's Witnesses who has to undergo an elective excision of a large hemangioma on her right forearm, to be followed by a latissimus dorsi muscle flap transplant, clearly refuses any blood transfusion. Would you give blood to the patient in the case of life-threatening danger?The results are shown in Table 1.
Table 1. Study results Choice Participants (N) Anesthesiologists (29)† Nurse Anesthetists (33) Surgeons (41) Surgical Nurses (21) Transfusion, % (n) 55 (16) 36 (12) 29 (12) 29 (6) Abstaining from transfusion, % (n) 38 (11) 64 (21) 68 (28) 71 (15) Undecided, % (n) 7 (2) 0% 3 (1) 0
† The figures of the study for this column containing the anesthesiologists are somewhat different because they do not take into consideration the two who abstained from responding. Therefore, the results given by the authors of the study are as follows: 59% would give a blood transfusion and 41% would not transfuse. Nonetheless, we have preferred to take into account the two indecisive ones to make sure that the figures given reflect the reality more precisely.
What Do These Figures Show?Even though a majority of caregivers would refuse to administer a blood transfusion (61% against 38%), there is one particular category of caregivers that would not hesitate to override the will of their patients: the anesthesiologists. A clear majority among them is willing to force a blood transfusion upon the patient even after they have attended a seminar dealing with ethics, as the figures earlier show.Such an approach seems to be surprising, given the unequivocal legal regulation concerning this matter, the ethical principles favoring the autonomy of the informed and capable patient, and the fact that this group of caregivers is aware of the patient's wishes. All the more surprising, given that the decision to administer a blood transfusion ultimately rests in the hands of these anesthesiologists. Briefly then, this study reveals the attitude of anesthesiologists and shows what would happen to the patient in such a case as described earlier, especially if the patient was unconscious.However, looking beyond the figures and percentages given, far more surprising are two other aspects revealed by the study: first, the matter of the rationales chosen by the anesthesiologists in order to justify their choice to override the will of the patient, and second, the relatively accommodating way in which the authors of the study interpreted the figures, authors who themselves are specialists when it comes to questions of medical ethics. What are these two arguments?According to the authors of the study, two rationales are brought to the fore by those in the group who would refuse to heed the patient's choice.First, the overriders (OVRs)1 of the patient's will would administer a blood transfusion to the patient because they doubted whether he “really understood what it means to die,” and second, because the OVRs refer to their own feelings of compassion in making themselves defenders of the patient's well-being.Concerning the first argument, they explained their choice as being the need to take into account the consequences for the patient, especially of the risk of death. They stated that the evaluation of the degree of the patient's autonomy must be undertaken in the light of the specific context of a treatment that could carry fatal risks for the individual.2 In other words, it is implied that the level of requirement must be particularly strict in this type of case, more so than in other situations where vital prognosis is not undertaken.Regarding the second argument, the researchers say it is not enough to be technically competent to be a good doctor; at the same time, he must show compassion toward the patient.That means taking into account the patient's existential needs that therefore prevent him from “obeying” the patient's choice, and all the more so as it is the anesthesiologists, from among all the medical team members, who have to render an account to the institution regarding the negative consequences, which could be brought about by the patient's choice.3
What Can Be Made of Such Comments?Even though these comments seem to represent good reasoning per se, under strict scrutiny, it appears that they are purely theoretical, in discrepancy with reality.So, let us get back to reality.
II. The Return to RealityWe shall take up these two rationales or arguments one after the other. We will also include the expressions of Dr. John D. Banja from his critical commentary, written as a response to this study.
The Argument Concerning the Lack of Capacity to Discern the Negative Consequences of the Choice of TreatmentIt goes without saying that the choice of treatment in a vital issue is of a far greater magnitude than, for example, making choices regarding what type of automobile or clothes to buy. Therefore, it is to be assumed, when life is at stake, that the evaluation of a patient's capacity to choose a treatment must be realized in an especially careful and attentive way. But this does not at all mean that a patient who chooses a potentially dangerous health treatment must automatically be considered as being someone incapable of discernment. However, this is exactly what the OVRs, as well as the authors of the study, seem to insinuate—even more so as the study does not detail the psychological characteristics of the patient in question—and the OVRs responded without even asking about the reality of the patient's capacity to consent to treatment.Here are some questions that the medical personnel should have asked themselves before they responded to the questions in the survey:· Knowing that the law presumes the existence of the capacity of adult patients, are there solid reasons that allow me to doubt such, simply because of the fact that a patient chooses a treatment that is contraindicated and liable to be fatal to him?· Because it is all about the patient's ability to take a reasoned decision, did he have at his command enough information in order to make his choice? Is he fully aware of the attendant circumstances of the situation and particularly of the medical diagnostics, of the recommended therapeutic intervention, of the induced risks as a result of his choice, and the phase through which he risks crossing the borderline between life and death?· What is it that leads the patient, despite everything, to opt for a contraindicated treatment?· Finally, has he come under external pressure, which could suppress his discernment?As far as we know, the seminar did not deal with such questions and even less with the answers to such questions. This could have been a “trap,” which perfectly served the interests of the organizers of the seminar, thus precisely allowing the participants to omit this fundamental methodological aspect from now on when it comes to evaluating situations—and all of this under the mantle of education. However, it seems that such was not the case, because the organizers of the seminar made no reference to such aspects in their written record. Besides, following the title of their study, it can be seen that the authors found the most interesting point to be the difference in behavior of the different groups of caregivers, rather than the reasons for their behavior. The methodological approach to ethics was not highlighted.The seminar would have been more realistic and effective if it had helped the participants to ask themselves questions concerning patients' capacity for discernment when it comes to such types of issues. This would have allowed these caregivers to acquire a consistent methodological approach rather than coming forward retrospectively with a contradicting argument in order to justify their behavior.In the critical article in response to this study, Dr. John D. Banja shares the idea that the patient was endowed with capacity to choose his treatment. Thus, he confronts the OVRs with a fundamental fact. According to him, believing that a patient who is a Jehovah's Witness, otherwise intelligent and discerning, is not capable of understanding the concept of death, is devoid of common sense.In reality, based on existing research in the field of psychology, children at the age of 9 years already start to form an idea about death. In addition, believing that a mature and intelligent person does not know what it means to die is tantamount to saying that he has never seen, read, or understood information about death, and that he has never asked questions about the philosophical or religious concepts of this subject. Indeed, if an otherwise thoughtful and mature patient who is a Jehovah's Witness does not understand the meaning of death, why should we think any other patient does who refuses life-saving treatment, e.g., dialysis, cardiopulmonary resuscitation, artificial ventilation, etc.? But that would mean agreeing to go back in time several decades, to the time of primitive paternalism, which, it is easy to imagine, is neither wished for by medical professionals nor by patients.Further, the author concludes that where the medical professional doubts whether the patient who is a Jehovah's Witness knows what death means, then you only need to do a very simple thing: just ask him. With these remarks, Dr. Banda pinpoints a fundamental element of the doctor-patient relationship that everyone knows about, but which tends to be put aside at particularly critical moments in favor of supposed medical efficiency: communication full of empathy, and it is especially at risk when it is most needed.The Argument Concerning the Compassionate Approach of the Physician Who Favors the Patient's Need to Survive
The authors of the study are completely right in stating that the competence of a medical professional cannot only be measured by his technical skills, but also by his personal qualities. Indeed, there are times in the medical field, as in other scientific fields, when the personality of the medical professional as well as his capacity to feel the frailty of the patient in his own heart, are necessary to preserve mutual trust, which is absolutely essential in the doctor–patient relationship.This empathy, however, should not be interpreted as a way to discard the patient's wishes. To the contrary, empathy, with its capacity to put oneself into another person's shoes, as it were, aims at conscientiously taking into consideration the ethical stance of the patient. It is not a matter of projecting one's own values onto the patient, but rather, to understand those values that inspire this particular patient. As Dr. Roggo confirms: “This is often disagreeable and creates extra work. This additional work, however, also could be the consequence of insufficient work, in extreme cases it could even be an expression of human and professional incompetency”. Understanding is not the same as agreeing or joining. Indeed, it would be very difficult for a caregiver who is, for example, an atheist, to understand that a patient who is a Jehovah's Witness, is convinced that God would resurrect him to everlasting life if he respects the biblical command to abstain from blood and thus refuses a treatment, which this medical professional considers life-saving (“Witnesses believe that blood transfusion is prohibited by Biblical passages such as Acts 15:19–21, which say ‘Abstain . . . from fornication and from what is strangled [unbled meat] and from blood.’ This first century apostolic decree, which was repeated at Acts 21:25, took into consideration the divine command given to Noah, the common ancestor of humankind, according to the Biblical record, and its reappearance in the Mosaic Law over 850 years later (Genesis 9:3, 4; Leviticus 7:26, 27; 17:1, 2, 10–12; Deuteronomy 12:22–25)”) .For example, he could ask himself the following series of questions:· Can I impose my personal view of things on the capable patient simply because I am the medical professional and because these values are commonly shared by a large number of individuals in society?· Is it so that I am certain to be right from both the medical as well as from the moral point of view?· Could it be that I consider the patient to be like a corpse denuded of spirit which I have to save at all costs? Are there not other people—firefighters, mountain rescuers, soldiers, etc.—who are willing to sacrifice their lives for values they consider nobler, without my considering them as lacking discernment? · Finally, would I wish to live in a society in which, in the name of a universal truth, which stipulates which are the best choices for life, people would be forced to abstain from alcohol, to abstain from eating fondue, to exercise five times a week, and to be under an obligation to strive to live as long as possible?Here are so many delicate questions that could help the medical professional to see more clearly the reality of the motives that inspire him and to help him to apply true empathy in the relationship, which binds him to the patient whose requests surpass the ordinary.In his study, Dr. Banja develops other arguments. He shows that the medical professional may feel compassion for the patient in question because he himself may suffer upon seeing the patient subjected to the merciless consequences of his beliefs. But he forgets at the same time that these feelings of compassion are based on the values held by the individual and that these are not necessarily shared by others.According to him, true protection of the patient's rights requires that the medical professional undertakes the effort to respect the way of thinking of the patient who is a Jehovah's Witness, even though he feels pained to realize that the patient prefers to give priority to gaining everlasting life, rather than to a temporary prolongation of his present life. The fact that the OVRs would reject this hierarchy of values by negating the patient's will gives way to a paternalistic attitude, which is exactly the opposite of a compassionate one.Finally, the author has serious questions even regarding the very foundations of the choice made by the OVRs. On the basis of research done by psychologists in the 1950s on the theory of dissonance, he explains that all human reasoning pursues a specific goal. And when such reasoning corresponds with his own behavior, the individual often has the tendency to justify his own choices in order to find excuses or to ensure that the information or the events that are in disagreement with his own hierarchy of values, fit in, one way or another. This is because of the fact that the majority of us ponder over things while having a high opinion of ourselves, of our own capacity, values and choices—and one has to admit—members of the medical professional are no exception. To the contrary, their highly respected professional status, the constant dependency of the patients on their professional capacity, and therefore their obvious natural superiority over the patient pushes them to develop a firm personality imbued with strong self-confidence.It is therefore fully understandable that when a “troublemaker” such as a patient who is a Jehovah's Witness does not agree with the logic of the medical professional, the latter would have to put forward a great effort in order to comprehend his alter ego, because he has to let go of his own autonomous reflections for a heteronomous approach. This is especially the case when the life of the patient is at stake and the logical thought of the medical professional would be to use commonly accepted medical techniques in order to rescue the patient and to save his life. One can understand here how the personal qualities of the caregiver are essential in view of such a task. Will the medical professional be capable of taking a little bit of time out of his already busy workday in order to try to understand the particularities of his patient? Will he be able to prove his humility by putting aside his own prejudices? The task is not easy. Nonetheless, it is here where his work challenges him, because—let us not forget—he has agreed to serve the patient . It is here where finally true medical ethics begin, based upon genuine respect for the patient and which truly establishes a treatment worthy to be called a therapy. For what merit has the caregiver as regards tolerance when he only respects and cares for patients who quietly submit themselves willingly to his point of view?Let us be reassured, however, that the task is not insurmountable.As far as patients who are Jehovah's Witnesses are concerned, especially in the United States, quality ethical workshops are organized on a regular basis in collaboration with the Hospital Liaison Committees of Jehovah's Witnesses  with the aim of best managing such delicate situations. They help the participants particularly to determine the patient's unambiguous capacity for discernment and whether external pressures possibly exist. By the way, hospital management plays a fundamental role when it comes to encouraging its staff to have such an open approach, knowing that it helps the staff to give such patients better treatment. Finally, medical professionals also have sufficient legal information in order to know that they could be prosecuted, should they brush aside the will of the capable patient in order to enforce their own wishes  (see also Trechsel and Noll ).In conclusion, even though the results of the study of Cahana et al. as well as the commentaries of these authors are somewhat surprising and disappointing, they still have the merit of pin-pointing current incoherencies and weaknesses regarding ethical and legal practices that can take place even in a well-reputable hospital. Realizing this makes it possible to react, because the worst thing is not that such situations occur but rather, that they persist without anything being done to remedy it.Therefore, it would be fitting if hospital authorities would seize the opportunity to help their entire body of medical personal to acquire a real ethical approach based on empathy toward the patient whatever the circumstances. From this we all would benefit.
SummaryUnder Swiss legislation, the right of the informed and capable patient to self-determination is absolute. Nevertheless, a statistical survey undertaken at the University Hospitals of Geneva reveals that the reality is markedly different in the mindset of a number of caregivers, particularly among anesthesiologists and especially when they consider that the patient's choice could be fatal. It is the object of our article to examine carefully the two main arguments put forward in this survey by the caregivers, for overriding the patient's will. We shall conduct our considerations in the light of a second, critical article, which appeared sometime later, in the same journal, in answer to the first statistical study published.
Notes· 1 Banja (2009, 878).· 2 Cahana A, et al. (2008, 734).· 3 Ibid.
References· Swiss Federal Court. Swiss Federal Court Decision, 28 April 2003, Application number 4P 265/2002, §5.5. In French and German. Available at: http://www.bger.ch (accessed October 9, 2011).· Cahana A, Weibel H, Hurst SA. Ethical decision-making: Do anesthesiologists, surgeons, nurse anaesthetists, and surgical nurses reason similarly? Pain Med 2008;6:728–36.· Banja JD. Overriding the Jehovah's Witness patient's refusal of blood: A reply to Cahana, Weibel, and Hurst. Pain Med 2009;5:878–82.· Roggo A. Entre droit et justice [Between law and justice]. VSAO-Journal 2007;2:22–4. Use FindIt to look for full text in other services· Bodnaruk ZM, Wong CJ, Thomas MT. Meeting the clinical challenge of care for Jehovah's Witnesses. Transfus Med Rev 2004;2:105–16.· Piccioli P. Il rifiuto di terapie salva-vita a confronto con la bioetica e con i princìpi costituzionali. Professione 2004;3:36–41. Use FindIt to look for full text in other services· Culliford L. Spirituality and clinical care. BMJ 2002;325:1434–35.· Sloan JM, Ballen K. SCT in Jehovah's Witnesses: The bloodless transplant. Bone Marrow Transplant 2008;41:837–44.o CAS,· Spahn D, Moch H, Hofmann A, Isbister J. Patient blood management: The pragmatic solution for the problems with blood transfusions. Anesthesiology 2008;109:951–3.· Trechsel S, Noll P. Schweizerisches Strafrecht Allgemeiner Teil I. In: Allgemeine Voraussetzungen der Strafbarkeit, 5th edition. Zurich: Schulthess; 1998:141. Use FindIt to look for full text in other services