Med Health Care and Philos DOI 10.1007/s11019-014-9548-y
SCIENTIFIC CONTRIBUTION
What does ‘‘presumed consent’’ might presume? Preservation measures and uncontrolled donation after circulatory determination of death Pablo de Lora
Springer Science+Business Media Dordrecht 2014
Abstract One of the most controversial aspects in uncontrolled (out-of-hospital) donation of organs after circulatory death (uDCD) is the initiation of preservation measures before death. I argue that in so-called opting-out systems only under very stringent conditions we might presume consent to the instauration of those measures. Given its current legal framework, I claim that this is not the case of Spain, a wellknown country in which consent is presumed—albeit only formally—and where uDCD is currently practiced. Keywords Donation after circulatory death Presumed consent Ante-mortem measures Best interests Introduction Death precedes cadaveric organ donation, but people might be pronounced dead either by cardio-circulatory or A preliminary version of this paper was presented at the 6th International Conference on Organ Donation after Circulatory Death, organized by the European Society of Organ Transplantation in Paris on February 2013 and at the ‘‘Encuentro sobre donacio´n en asistolia, reanimacio´n cardiopulmonar no convencional y bioe´tica’’ held at the Centre for Social and Human Sciences of the Spanish Research Council (CSIC, Madrid) on March 2013. In this seminar I received helpful feedback by Lorenzo Pen˜a and David Rodrı´guez-Arias who also read a first draft of the article and helped me to improve it substantially. Kevin Kriz made critical linguistic corrections and I thank him for his help. I am also grateful to the anonymous reviewers who read the first draft. This article is part of a research project funded by the Spanish Ministry of Science and Innovation (‘‘Las dificultades de la democracia: entre polı´tica y derecho’’, DER-200908138/JURI). P. de Lora (&) Department of Legal Philosophy, Law School, Universidad Auto´noma de Madrid, 28049 Madrid, Spain e-mail: [email protected]
neurological criteria. According to the Uniform Definition of Death Act of the USA (1981), death is caused either by (1) the irreversible cessation of circulatory and respiratory functions, or (2) the irreversible cessation of all functions of the entire brain, including brain stem. Similar legal definitions are found in many legal systems across the world.1 The circumstances in which the irreversible cessation of circulatory and respiratory functions occurs, delineates a well-known distinction between controlled and uncontrolled cardio-circulatory death.2 Thus, a patient might sustain cardiac arrest while brain dead (type IV in Maastricht’s classification) or as the accepted outcome of the decision to withdraw life-sustaining treatments (type III). Because, in those cases, cardio-circulatory death happens at the hospital ward or at the intensive care units, the eventual organ donation is labeled as ‘‘controlled donation after cardiac—or circulatory—death’’ (hereafter cDCD). When the cessation of the cardiorespiratory function follows an unsuccessful resuscitation outside a hospital setting, the subsequent donation is called ‘‘uncontrolled donation after cardiac—or circulatory—death’’ (hereafter uDCD). Donation after cardiac death has increased significantly in the last years3 not without controversy as regards to its 1
See, for one, article 9.2. of the Spanish Real Decreto 1723/2012. These labels pertain to the so-called ‘‘Maastricht classification’’ of non-heart beating donors; see Kootstra et al. (1995). Since the First International Workshop on DCD in which the classification was proposed, the taxonomy has been amended due to several medical refinements in the procedure. For the latest addition, see Geraci and Sepe (2011, 614). 3 For the European data see Domı´nguez-Gil et al. (2011). In the US, according to Munjal et al. (2013) although the number of cDCD has increased over the years, still accounts for only 10.6 % of all deceased donors. 2
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compatibility with the so-called ‘‘dead donor rule’’.4 In this essay I will set aside the ethical and legal debates that cDCD has prompted and focus instead on uDCD. One of the key disputes over uDCD lies in the instauration of ante-mortem and postmortem measures once cardiopulmonary resuscitation has been declared unsuccessful. Those measures—intubation, cardiac compression, venous accesses, heparinization, cannulation and ECMO— are aimed at the optimization of organ recovery, not rendering any clinical benefit for the individual who has suffered the cardiac arrest.5 When donation follows the withdrawal of life-sustaining treatment in the hospital setting, the initiation of preservation measures seems straightforwardly justifiable as the consequence of previous consent of the patient and/or the family. However, outside the hospital scenario, due to time constraints in order to avoid the effects of warm ischemia, it is much more difficult to contact the family or gather information about the individual’s past wishes.6 In Spain, the only member of the Council of Europe along with France in which uDCD has been developed7, the justification of preservation measures is built upon the fact that the Spanish transplantation system is one of ‘‘opting-out’’. My aim in the following pages is to question the assumption that, once presumed consent to donate is accepted, Spaniards have also given consent to everything that might precede it.8 In order to do so I will structure the paper in the following way. In the first part I will clear the conceptual field in regards to the concept of a legal presumption and the notion of presuming consent. Secondly I will argue that so-called systems of opting-out (or opt-out) or opting-in (or opt-in) encompass many different institutional schemes for procuring organs and that, relative to those differing features, the value of individual autonomy is more or less honored and the procurement system is more or less akin to a model of organs’ conscription.9 In the third part of the essay I will focus on the Spanish legal
framework for organ donation, a system assumed to be one of opting-out but with significant deviations from the ideal model, and most importantly, with traits that, in my view, preclude the possibility of presuming consent for antemortem measures in uDCD. My conclusion will therefore be that the justification for the initiation of organ-preserving measures in uDCD based on presumed consent is flawed under current Spanish law.
The nature of a legal presumption Presumptions abound in legal systems because, for a host of different reasons, we often need to deem as certain what we are uncertain about.10 In a strict sense, one can only presume what is likely to happen or have happened (Pen˜a and Ausı´n 2001, pp. 97, 105–106). Legal systems and legal commentators, however, use presumptions in a much looser and more pragmatic fashion. Some rules about presumption aim to lay down a procedural truth, not what has likely happened but what ought to be taken as proven in an institutional context such as a trial (Aguilo´ 2006, pp. 16–17, 19). Consider for one innocence presumption in a criminal procedure. As a guarantee against governmental abuse, individuals are presumed innocent unless proven guilty beyond a reasonable doubt. So when the jury acquits the defendant it is not because they have found the accused more likely to be innocent, but rather because the prosecution could not fully ascertain the defendant’s culpability. In this first sense the presumption is tantamount to a rule which assigns the burden of proof following normative or value-related reasons. And it does so in the following way: granted that the jury or the Court is susceptible to be mistaken either because the defendant was actually innocent or because it was actually guilty, we, as a society, deem it preferable that our institutions err in acquitting who is actually guilty.11
4
For an overview of the terms of the discussion, see Miller and Truog (2012, pp. 52–79). 5 For a comprehensive survey of those measures in the transplantation literature, see Bastami et al. (2012). 6 As opposed to the procedure followed in Spain and France, the current New York City Protocol for uDCD explicitly sets a period of 15–20 min after the declaration of death in which it is attempted to contact the family. Only after that period, the body is rushed to the hospital in order to initiate organ preservation measures; see Munjal et al. (2013, p. 23). For the contrast with Spain, see Rodrı´guez-Arias et al. (2013). 7 See Domı´nguez-Gil et al. (2011). 8 That opting-out equals ‘‘presumed consent’’ is a constant tenet in the transplantation literature; see, for one, Johnson and Goldstein (2003, pp. 1338–1339). 9 By organs’ conscription I mean the possibility of the Government taking organs from dead people regardless of their previous consent.
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10
The Law, occasionally, grants truth-value to what is patently false. In that case a ‘‘legal fiction’’ emerges. The famous fictio legis Corneliae of Roman Law is a poignant example: Roman soldiers who were captured and enslaved were considered dead because only free men were capable of making a will. 11 In this I am closely following the classical article by Edna UllmanMargalit (1983). Consider the related area of the withdrawal of lifesustaining treatments. The landmark US case of Cruzan v. Missouri is a clear paradigm of the same error-assessment that leads to tip the balance in favor of withholding artificial nutrition and hydration: the US Supreme Court considered that because the err of withdrawing life-sustaining treatment to a patient who wanted to remain alive was more serious (for its irreversible nature) than keeping alive the patient who actually rejected extraordinary measures, it could be presumed that withholding artificial nutrition and hydration aligned with the best interests of the patient; see 497 U.S. 261, 283 (1990).
What does ‘‘presumed consent’’ might presume?
Another example from a different domain is in order: how should we decide when there is uncertainty about the timing of an individual’s death who happens to be the inheritor of someone else who died in the same event? In these cases it is critical to know who survived longer and whether or not the property was transferred from the person who died to the survivor. In many jurisdictions, absent clear evidence the Law presumes a simultaneous death placing the onus on the inheritance’s claimant.12 As Alta Charo has said: ‘‘… the simultaneous death statutes are creating presumptions of law, not simply setting forth permissible inferences of fact from clues like extended absence’’ (1999, p. 283). Again, it is not statistics or the commonness of certain events, consequences or states of affairs what provides the underlying justification for the presumption. And yet, when presuming something the Law might indeed attribute relevance to some facts (either natural or conventional), the common experience, or hinge upon inductive-probabilistic considerations in order to assume the existence of certain rights, duties or states of affairs.13 In Ullman-Margalit’s jargon this is a ‘presumption-raising fact’ (1983, pp. 147, 157). If a child is born in wedlock within 6 months after the wedding the husband is presumed to be the father.14 The presumption is certainly rebuttable, but a social regularity makes it reasonable to use that fact as a default rule in the attribution of parental rights and duties. Finally, we are frequently in need to assign value to silence or omission whenever citizens or public officials are requested to act in a certain way (Ullman-Margalit 1983, p. 154). For instance, every year Spaniards are called to fulfill their income tax form and are asked to consign whether part of their taxes will finance the mission of the Catholic Church or rather contribute to sustain general social needs beyond those already satisfied by the Government. Not checking any of those boxes implies that Spaniards accept the latter goal. We are all perfectly aware of such outcome because we are warned of the default choice that follows our silence. This type of presumption is generally justified for pragmatic reasons.15
Is opting-out merely a legal presumption in favor of organ donation? Although, as we have seen, presumed consent has a manifold nature, in the case of organ donation it is built on three critical presuppositions: (1) the individual whose consent is presumed has to be competent (nothing can be presumed from someone who is unable to exercise autonomy), (2) the presumed donor is aware of the alternative courses of action16 and, last but not least, (3) the individual is bearer of post-mortem interests that ought to be honored to the greatest extent possible. Now, according to what I have mapped out in the previous section, opting-out systems can be first conceived of as embracing a legal presumption which favors donation based on some ‘‘presumption-raising fact’’. For example that people generally, when asked, is inclined to donate.17 Secondly, opting-out systems may alternatively be interpreted as the expression of a normative preference about whether to err on the side of harvesting organs against the wishes of the deceased or frustrating a wish to donate. Presuming consent means, in this case, a preference for the first kind of mistake (i.e. taking organs from someone who would not have consented if asked).18 Lastly, the presumption to donate might be characterized as the public response to a formal call. In this case, depending on the value assigned to non-response, presumed consent actually turns into tacit consent. A slight change in the way in which we put the question regarding whether to donate or not makes all the difference. Compare these two possibilities: ‘‘check the box if you want to participate in the organ donation program’’ as opposed to ‘‘check the box if you don’t want to participate in the organ donation program’’. Silence is equivalent to acceptance only in the latter case which pertains to an ‘‘opting-out’’ system, but not in the former which corresponds to an ‘‘opting-in’’ model. And yet, still we can’t be absolutely positive that there is a perfect match between silence and consent: what if the individual simply overlooked the box? Before we move forward to assess the conditions under which consent for organ donation and for ante-mortem measures in uDCD is presumed in Spain, a final remark on 16
12
See for example article 33 of the Spanish Civil Code. 13 Think about the official declaration of someone’s death after a prolonged period of absence or following a catastrophic event. Many legal systems convey rules for that purpose (see for example articles 193 and 194 of the Spanish Civil Code). 14 Ullman-Margalit brings the example (1983, p. 144) but it is actually incorporated in the Spanish Civil Code (article 117) as well as in many other Codes. 15 According to den Hartogh, this presumption may be better conceived of as ‘‘tacit consent’’ more than ‘‘presumed consent’’ (2011a, b, c p. 298).
Pablo Simo´n has emphatically affirmed that: ‘‘With no previous information there is no consent’’ (2002, p. 36). 17 This fact, sustained by public polling, has prompted the demand for the establishment of an opting-out system in the UK although it has been finally discarded. A similar asymmetry between the wish to donate and the actual opting-in system has been documented in Iowa; see Thaler and Sunstein (2009, p. 178). 18 For den Hartogh, we never err when not removing organs absent consent, simply because consent, as a mental state, cannot be presumed. Not removing organs when the deceased has not expressed his preference makes us always be in the safe side (den Hartogh 2011a, b, c, p. 302).
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the nature of presumed consent is in order. Presumed consent has a ‘‘fictional’’ nature when construed as a hypothesis about how organ donation actually aligns with the overall personality and way of thinking of the deceased. We can always hypothesize whether the deceased would have wanted to donate absent his clearly expressed preference while alive. It is precisely for that reason that clinical teams approach the family or collect testimonies from his/her acquaintances. In this case a ‘‘mental state conception’’ of presumed consent is presupposed because the reality is that the deceased did not actually display any action in order to express his/her will. A nice example by den Hartogh reinforces this point. Suppose you request your dear neighbor to be so kind to borrow her car and the answer is: ‘‘Let me think about it. I might need it tomorrow to go to work, although it is unlikely’’. The next morning you see that she takes the bus leaving the car in the garage. You approach her husband and ask for the keys telling him that she ‘‘consented’’. Had she really? You might infer her mental state of accepting your using the car from what she said and did, but the presumption is defeasible: maybe she just forgot about it and would not have consented had you asked her again. It seems to make a whole lot of a difference had she said: ‘‘Of course, take it. Here are the keys’’. Admittedly, a mental state conception of consent misses a salient feature of our moral and legal autonomy: the sovereign aspect of our being entitled to determine what is in our best interests and what those interests require. This is why den Hartogh has claimed that in the phrase ‘‘presumed-consent’’, consent is simply a fiction, a rhetorical device (den Hartogh 2011a, b, c, p. 300). And yet, if we stick with the example, it also makes a huge difference had the neighbor said: ‘‘No, I am sorry but I can’t lend you my car’’. So even if presuming consent runs a certain risk of misreading the agent’s intentions, the hints of a situation might, albeit non-conclusively, attribute a certain disposition, or even a tacit consent, to the individual who was asked. Imagine your neighbor responding: ‘‘Mmm I don’t think is going to be possible… It is very likely that I will need my car tomorrow… I’ll let you know first thing in the morning’’. It could be the case that she finally would have lend you the car—maybe she just forgot about the whole issue—, but ultimately she did not ‘‘let you know’’. Thus, it is perfectly presumable to conclude that she did not consent to your taking the car, although, from a ‘‘mental standpoint’’ she actually did. Some conclusions follow from the previous discussion: different sorts of presumptions are at play in opting-out systems, and, therefore, opt-out (and conversely opt-in) is too broad a label to describe the complexity of institutions, policies and social practices that underlie the use of cadaveric organs. Take for instance the reconstruction of opting-out systems made by Ben Saunders: the act of
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opting out should be conceived as a conscientious objection against a general duty to donate (2010; pp. 84–87).19 Under that interpretation, an opt-out system is no different from a system of ‘‘routine removal’’ of cadaveric organs (Potts et al. 2010, p. 499).20 We depart from such confiscatory policy once we start factoring in different aspects of the procedure to become an organ donor that give us opportunity for dissent. Think about whether potential donors are advised and called to make a choice throughout a public procedure, what is sometimes labeled as ‘‘mandatory choice’’21; whether citizens are given a deadline to choose22; whether there is some official registry in which to register the refusal or acceptance23; whether individuals are clearly instructed about the default option; whether they are fully (or less than fully) or neutrally (or less than neutrally) informed regarding donation or rather persuaded to donate,24 and whether the family has veto capacity. Taking all those features into account we get a wide spectrum of procedures that goes far beyond the rough distinction between being ‘‘in’’ or ‘‘out’’ for organ donation purposes. And yet, notwithstanding on which side of the spectrum the actual procedure lies, consent seems to be doing the normative work; either because it is presumed or required, consent is valued.25 This is the reason why, according to James Childress: ‘‘To be ethically acceptable, a policy of presumed consent would require widespread and vigorous public education to ensure understanding, along with clear, easy, non-burdensome, and reliable ways for individuals to register dissent’’ (2006, p. 210).26 Up to this point I have been describing a model that, either in the version of opting-in or opting-out, has gained universal acceptance because it is based on consent. Currently there is no legal system in the world that dispenses with the deceased’s consent—or the authorization of the next-of-kin- for the sake of procuring organs. But the truth is that we could altogether circumvent consent. Organs’ removal for transplantation purposes has a neat justification beyond consent based on the compelling interests of 19
See Also Nelson (2011), p. 290). See also Childress and Liverman (2006). 21 See for instance the procedure followed in The Netherlands or Germany as described by den Hartogh (2011a). 22 Even in those cases in which choice is mandatory and there is some time to make up one’s mind, there is a necessity to set a default option in the meantime; see den Hartogh (2011a, b, c, p. 295). 23 Which is the case of Belgian law; see den Hartogh (2011a, b, c, p. 306 n. 42). 24 This is the model called ‘‘presumptive approach’’ by Simon Rippon (2012, pp. 344–345). 25 In this I am closely following den Hartogh’s approach (2011a, b, c, p. 296). 26 My italics. More recently, in the same vein, Baumann et al. (2013). 20
What does ‘‘presumed consent’’ might presume?
potential recipients and the pivotal fact that the bearer of the right to corporal integrity has died (Harris 2003; Fabre´ 2004, 2006; Delaney and Hershenov 2009a, b; Emson 2003) or is ‘‘as good as dead’’.27 There is a moral case for organ’s conscription, even an unproblematic one, according to some (Lippert-Rasmussen 2008, p. 100 n. 32), and if I point out this possibility is because the fact that a particular system of presumed consent slips closely towards the confiscatory model does not overly invalidate it for that reason. Organs’ conscription might be justified albeit not under the guise of presuming consent.
The Spanish case: opting-out and organ-preserving measures In the previous section I aimed to clear the conceptual field surrounding the opt-out models of organ donation. Now, I will turn to the Spanish transplantation system as regards to preserving measures for uDCD. My goal is to assess whether those measures might be presumed given the way in which consent for donation is legally presumed in Spain and taking into account the legal principles and rules that explicitly or implicitly inform the Spanish legal system as a whole. In Spain, as I said, there is a legal presumption in favor of organ donation since 197928 but the practice that has followed ever since has been to ask for the family’s consent (Domı´nguez-Gil et al. 2010, pp. 17–18).29 At the time in which the opt-out system was legally enshrined there were no data showing that a majority of the Spanish citizens were more prone to donate, so the legal presumption was established in a sociological vacuum. Some of the representatives who gave their support to the Act in 1979 greeted what they thought was a significant leap towards the seizure of human corpses by society.30 Subsequent surveys have shown that our attitude pro-donation does not substantially depart from what is common in other countries in which
27
I borrow the expression from Robert D. Truog and Franklin G. Miller. Being ‘‘as good as dead’’ points to the fact that the individual is in a clinical trajectory of imminent death with no hope of recovery. In their own words: ‘‘An individual is as good as dead when he is in a situation in which it is appropriate, in some respect, to treat him as if he were dead’’ (Miller and Truog 2012, p. 144). 28 Ley 30/1979 (article 5.2.). This legal provision has been incorporated in subsequent ‘‘Reales Decretos’’ (legal norms coming from the Government which are of an inferior legal hierarchy than ‘‘Leyes’’ (Acts). 29 Following Govert Den Hartogh’s taxonomy, that makes our system one of ‘‘imperfect opting-out’’ ( 2011b, p. 260). 30 That was the case of the member of the Communist Party, Miguel Nu´n˜ez Gonza´lez; see Diario de Sesiones del Congreso de los Diputados, no 26, July 27th 1979, p. 1453.
opting-in is the norm.31 In 2004 Catalina Conesa Bernal et. al. showed that 75 % of the people asked were against presumed consent. Even more interestingly for my purposes, the conclusion of a recent study conducted by significant members of the Spanish Organizacio´n Nacional de Trasplantes (ONT) reveals that only half of the individuals who were interviewed would allow organ recovery from a deceased close family member if his or her wishes were unknown. A significant 25 % would not allow the recovery and the other 25 % does not answer (Domı´nguez-Gil et al. 2010 p. 22). Last but not least, according to the latest Eurobarometer on organ donation and transplantation in Europe, only 21 % of Spaniards know the basic facts of the Spanish legislation on organ transplantation. Given that reality, the Spanish opt-out transplantation system cannot be built on any raising-fact presumption. On the other hand, the Spaniards’ presumed consent is neither understandable as a ‘‘tacit acceptance’’ of donation after death. The Spanish’ institutional scheme (norms and practices) for organ donation precludes that interpretation: Spain lacks any official registry specifically built to record organ donation refusals, as opposed to Austria, Belgium, Hungary, Poland, Portugal, and Sweden which are also opting-out countries.32 Contrary to countries such as Germany or The Netherlands, Spanish citizens are not called to give their consent under any warning of their silence being equivalent to acquiescence. Spaniards are not previously informed about the relevant aspects concerning donation and transplantation. If it were not for the fact that families have the final say and judges play a subsidiary role, our opt-out system would be one of organ conscription very much resembling the practice of autopsy. Having depicted the institutional and sociological background of the Spanish transplantation system, let us resume our main discussion, whether consent for antemortem measures in uDCD might be presumed if consent for organ donation is legally presumed. In the much-quoted report Organ Donation. Opportunities for Action issued by the Institute of Medicine of the United States, it is stated that in those countries in which an opt-out system has been established: ‘‘… consent for cannulation and cold perfusion 31
In the study conducted by Scandroglio et al. roughly 60 % of those interviewed were willing to become organ donors; see Analysis of the attitudes and motivations of the Spanish population towards organ donation after death (2011, p. 159). Similar data is reported by Domı´nguez-Gil et al. (2010, p. 21). It is striking that, despite the success of the Spanish transplantation system, the percentage of people willing to donate has not significantly increase since 1999. In the Special Eurobarometer no 333 ‘‘Organ Donation and Transplantation’’ issued by the European Commission in June 2010, Spain appears well behind many other European countries in willingness to donate. 32 However, Croatia and Norway also lack official registries. I owe David Rodrı´guez-Arias this information.
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may be presumed… the committee regards the use of preservation techniques while families are contacted—for the purpose of preserving the family’s opportunity to make their own informed decision regarding donation—to be ethically acceptable in principle’’ (2006, pp. 153–154).33 This justificatory strategy was also adopted in the ‘‘Documento de Consenso Nacional 2012’’ issued by the Spanish National Transplant Organization34 and has subsequently been incorporated in the most recent piece of the Spanish transplantation law: the Real Decreto 1723/2012 (article 9.1.a). The way in which uDCD proceeds in Spain is, according to the Real Decreto, roughly as follows: once the standard CPR has been declared unsuccessful by the emergency services, the patient is rushed to a hospital able to harvest organs.35 On the way, cardiac massage and intubation is kept just for the sake of optimizing the chances of a successful transplantation. Only when the patient arrives at the emergency room and the critical care physician corroborates the absence of pulse, death is officially declared. An authorization to initiate preservation measures is then requested from the judge who has 15 minutes to respond.36 His or her silence is taken as a tacit approval to the procedure. With all the preservation measures already in place, the family, once at the hospital and once informed about the death of the next-of-kin is asked for consent to donate.37 One of the arguments that might be raised to consider that preservation measures are covered by our overall 33
In the same vein see Bonnie et al. (2008, p. 741). Donacio´n en asistolia en Espan˜a. Situacio´n actual y recomendaciones, pp. 120, 153–154, 197. 35 As Rodrı´guez-Arias and colleagues have said, this decision is ‘‘strategic’’ (2013, pp. 27–28). As opposed to the French protocol, according to which the emergency team should proceed with absolute transparency, in Spain the family who might be present at the scene of the cardiac arrest and during the resuscitation maneuvers, is not likely to be told the true purpose of the subsequent clinical procedures. 36 In Spain, as in many other countries, individuals are able to sign a living will where they document the sort of care they are willing to receive at the end of life. Those advanced directives can be registered in public registries. It is doubtful, to say the least, that judges or members of medical teams rushed by the events in uDCD are really able to look up whether the person did register any provision regarding what should be done with his body after death or in the imminence of death. 37 It is important to stress the fact that this consent is not legally required, although, since the very beginning of organ transplantation in Spain, the practice has been to ask the family for consent and to respect the denial to donate, even if legally speaking the transplantation team could have proceeded with the organ’s removal absent the explicit opposition of the deceased (see supra). The Spanish legislation does not provide a family veto: if the next-of-kin is consulted is just for the purpose of knowing the patient’s wishes or expressed rejection to donate. I am grateful to an anonymous reviewer for suggesting me to clarify this ambiguity in the text. 34
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presumed consent to donate is the fact that we do not and should not give specific (or, for the case, tacit) consent to every step that is part of a medical procedure to which we give consent. It goes without saying that if I consent to an appendectomy I certainly consent to the surgical incision that is necessary in order to remove my infected appendix.38 Is this a proper analogy? I think not. As Browne et al. have argued in the similar context of the initiation of ‘‘elective ventilation’’ (2000, p. 49), people in general are not aware that a relation of entailment holds between the array of measures that should be put in place in the out-ofhospital scenario and the donation of organs. More importantly, some of those decisions are morally problematic if we take into account that the clinical measures are not made in the benefit of someone who is still, at least legally, not dead. As I pointed out at the beginning, antemortem procedures to procure organs in uDCD are in clear contravention to the Convention on Human Rights and Biomedicine established by the Council of Europe (also known as the ‘‘Oviedo convention’’) which, in article 6.1., states that: ‘‘… an intervention may only be carried out on a person who does not have the capacity to consent, for his or her direct benefit’’. The Additional Protocol to the Convention on Human Rights and Biomedicine concerning Transplantation of Organs and Tissues of Human Origin reinforces this commitment with the principle of beneficence and the preeminence of consent.39 In the very close debate on ‘‘elective’’ or ‘‘non-therapeutic’’ ventilation in the UK it has been argued that initiating measures which are not any longer for the clinical benefit of the patient (such as artificial ventilation) but for the eventual benefit of the organ’s recipient, might nevertheless be in the best interests of the patient if we expand the notion of ‘‘interests’’ beyond the strictly medical aspects. 38
In the somewhat different context of withdrawing life-sustaining measures in an end-of-life care scenario, such ‘‘over-information’’ might even be uncompassionate; see Rubenfeld (2004, p. 439). 39 See article 17. An anonymous reviewer warned me about the importance of considering the Additional Protocol. Although the value of personal autonomy is not absolute its preeminence in the current practice of Medicine is hardly questionable. From an institutional point of view clinical procedures performed without consent for the benefit of others are absolutely exceptional. Compulsory vaccination for public health reasons is probably one of those very few cases and is legally enshrined in some jurisdictions. But this is not the case of organ donation. According to the Oviedo Convention (article 20) and its additional Protocol, minors can only make living donation of tissue—blood or bone marrow—under very stringent conditions and the living donation of organs seems forbidden in absolute terms, even for the sake of saving their siblings’ lives, for example. As I said, from a moral stance which is not rights-based, people—its interests or life-plans—might be sacrificed for the sake of the greater good. Dealing with such justification for a radical change in the way we proceed with organ transplantation clearly exceeds what I attempt to do here.
What does ‘‘presumed consent’’ might presume?
Thus, if the patient wished to donate, non-therapeutic ventilation, although lacking clinical benefit, is the means to fulfill the patient’s posthumous will (Coggon 2013, p. 132). However, as McGee and White have said, considering that initiating elective ventilation or, in our case, the uDCD protocol, is always in the best interests of everyone subverts the idea of best interests. The reason is quite simple: best interests should be conceived of in a case-by-case basis, that is, in a subjective fashion (McGee and White 2013). What is in your best interests might not be in mine. As I said before, the Institute of Medicine considers that it is in principle justifiable to extend the donation presumption to ante-mortem measures. However, it also affirms that for donor consent to be valid and capable of being used as an advanced directive, the general public needs to be provided with accurate information about all aspects of organ transplantation (2006, p. 182). This has not been the case in Spain, if only for the fact—not to be lightly taken—that the decision to presume our acceptance to ante-mortem measures in uDCD does not come from a legislative Act but from a governmental Decree. And this is not a legalistic detail to be dismissed as an anecdotal technicality. The difference is crucial because, as citizens, Spaniards have not been given the opportunity to witness deliberation and divergent perspectives on the issue. A Decree in Spain is enacted by the Council of Ministries (the equivalent of the US Secretaries of State), whose meetings lack public exposure and official records. By way of contrast, in an opt-in country like the Netherlands, the decision to allow the initiation of preservation measures without the family’s consent—albeit with previous consultation of the official Registry—, was adopted by the Parliament in the Dutch Transplant Act of 1998 (Talbot and D’Alessandro 2009, p. 272).
Conclusion Being truly and genuinely informed about the preservation techniques and the protocol that is followed in uDCD seems the prerequisite for our lack of refusal to count as properly presumed consent. Thus, ante-mortem measures in Spain cannot be presumed to have been consented by the citizenry who is, by and large, absolutely unaware of the out-of-hospital procedure in uDCD and its potential clash with the way in which many might want to die. Still one could insist that no harm is really inflicted to the almost-dead patient40 and, on the other hand, much benefit is obtained. What interest can people raise to oppose a decision to be transported to a specific hospital, 40
I thank an anonymous reviewer for pressing me to deal with this point.
be applied chest compression, remain intubated, be administered heparin, cannulated and plugged to an ECMO device once dead? At the end of the day, it is the principle of non-maleficence what grounds the admissibility of antemortem measures in uDCD protocols. Two responses are in order. The first has to do with the notion of harm and its relevance. Harmful actions do not exhaust the domain of unacceptable conduct. The finegrained distinction between harming and wrongdoing is poignant in this discussion, and the treatment that we owe to cadavers—or individuals who lack the capacity to suffer such as early-stage fetuses or embryos—is the best example that I can provide to illustrate that even when there is no direct harm, still our behavior might be considered morally wrong.41 There is no uncontested evidence that a patient who suffered cardiac arrest is harmed while being the subject of ante-mortem measures. However, chest compression is an aggressive procedure that can cause serious injuries when performed either manually or by mechanical gadgets such as the LUCAS device (Rubertsson et al. 2007). Sternum and costal fractures are frequent although it is debatable whether an unconscious patient suffers as a result of those maneuvers. But what about the family who might witness the resuscitation effort, its persistence, the subsequent rushing to a hospital—not any hospital in the way—with an intimate hope of recovery but who might not be explicitly warned that such clinical display has the only purpose of making his next-of-kin a suitable organ donor? In a significant move, the French Agence de la biomedicine, the Socie´te´ franc¸aise d’anesthe´sie et de re´animation (Sfar), the Socie´te´ franc¸aise de me´decine d’urgence (SFMU), the Socie´te´ de re´animation de langue franc¸aise (SRLF) and the Samu–Urgences de France have changed their original uDCD protocols and recommended giving in situ accurate information to the relatives regarding the donation possibilities (Gruat et al. 2011).42 I would further argue that the objection based on nonmaleficence misses a relevant aspect of our conception of consent, what I previously called, in tune with den Hartogh’s approach, the sovereign dimension of autonomy. It is simply because it is us who say ‘‘no’’ or ‘‘yes’’ that our refusal or acceptance counts, even if we act for absurd, wrong or no uttered reasons whatsoever. Intriguingly enough, the Spanish transplantation Act of 1979 (article 9.1.a) and the subsequent Decrees instruct potential donors 41
What is the harm done to the fetus by flushing him thorough the toilet? (see Michael Rosen 2012, p. 135) or to a woman who, under the effects of anesthesia or because she is in a persistent vegetative state, is subject to vaginal examination by a bunch of medical residents? (the example comes from Charles Foster 2012). Both are instances of wrong, albeit non-harmful, behavior. 42 See supra notes 6 and 35.
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that they can refuse donation of some particular organs and consent explicitly to the donation of others. Thus, we should respect those who feel, for example, some special attachment to their lungs, but not to their kidneys, and therefore refuse lung’s donation. Awkward and arbitrary as it may sound, we accept it in the name of personal autonomy. In a similar vein, individuals might simply want to ‘‘be let alone’’—free of further interventions, devices, drugs, etc.—should they suffer a cardiac arrest outside the hospital. And if they happen to learn about the current quarrels regarding the determination of death they might be willing to exhaust all available means at the hospital for their own—and not others’—benefit. Particularly if they came to know the fact that some individuals have experienced total neurological recovery after being—and because they were—considered organ donors. If they can selectively object to organ donation, should not they also be able to selectively consent to donate after circulatory death only in controlled circumstances, but refuse to donate in uncontrolled conditions? Now, as I have insisted all along the paper, in order to do so first they should be aware of the existence of that protocol and its basic details. Lacking that information, presumed consent is no more than a fiction disguising the temporary conscription of dying people. There might be sound moral reasons to do so, but they are not based on honoring the individual’s will.
References Aguilo´, Josep. 2006. Presunciones, verdad y normas procesales. Isegorı´a 35: 9–31. Bastami, Sohaila, Tanja Krones, and Nikola Biller-Andorno. 2012. Whose consent matters? Controlled donation after cardiac death and premortem organ-preserving measures. Transplantation 93: 965–969. Baumann, Antoine, Ge´rard Audibert, Caroline Guibet Lafaye, Louis Puybasset, Paul-Michel Mertes, and Fre´de´rique Claudot. 2013. Elective non-therapeutic intensive care and the four principles of medical ethics. Journal of Medical Ethics 39: 139–142. Bernal, Catalina Conesa, Antonio Rı´os Zambudio, Pablo Ramı´rez Romero, M.Mar Rodrı´guez Martı´nez, Manuel Canteras Jordana, and Pascual Parrilla Paricio. 2004. Actitud de la poblacio´n hacia una legislacio´n de consentimiento presunto a la donacio´n de o´rganos de cada´ver. Medicina Clı´nica 122: 67–69. Bonnie, Richard J., Stephanie Wright, and Kelley K. Dineen. 2008. Legal authority to preserve organs in cases of uncontrolled cardiac death: Preserving family choice. Journal of Law Medicine and Ethics 2008: 741–751. Browne, Alister, Grant Gillet, and Martin Tweeddale. 2000. The ethics of elective (non-therapeutic) ventilation. Bioethics 14: 42–57. Charo, Alta. 1999. Dusk dawn and defining death: Legal classifications and biological categories. In Definition of death: Contemporary controversies, ed. Stuart J. Youngner, Robert M. Arnold, and Rene Schapiro, 277–292. Baltimore, London: The Johns Hopkins University Press.
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Childress, James F. and Catheryn T. Liverman, eds. 2006. Organ Donation. Opportunities for Action. National Academic Press: 205–210. http://www.nap.edu/catalog/11643.html. Coggon, John. 2013. Elective ventilation for organ donation: Law, policy and public ethics. Journal of Medical Ethics 39: 130–134. Delaney, James, and David B. Hershenov. 2009a. Why consent may not be needed for organ procurement. American Journal of Bioethics 9: 3–10. Delaney, James, and David B. Hershenov. 2009b. Mandatory autopsies and organ conscription. Kennedy Institute of Ethics Journal 19: 367–391. Den Hartogh, Govert. 2011a. Can consent be presumed? Journal of Applied Philosophy 28: 295–307. Den Hartogh, Govert. 2011b. Tacitly consenting to donate one’s organs. Journal of Medical Ethics 37: 344–347. Den Hartogh, Govert. 2011c. In the best interests of the deceased: A Possible Justification for organ removal without consent. Theoretical Medicine and Bioethics 32: 259–269. Domı´nguez-Gil, Beatriz, Bernadette Haase-Kromwijk, Hendrik Van Leiden, James Neuberger, Leen Coene, Philippe Morel, Antoine Corinne, Ferdinand Muehlbacher, Pavel Brezovsky, Alessandro Nanni Costa, Rafail Rozental, and Rafael Matesanz. 2011. Current situation of donation after circulatory death in European countries. Transplantation International 24: 676–686. Domı´nguez-Gil, Beatriz, Marı´a J. Martı´n, Marı´a O. Valentı´n, Ba´rbara Scandroglio, Elisabeth Coll, Jorge S. Lo´pez, Jose M. Martı´nez, Blanca Miranda, and Rafael Matesanz. 2010. Decrease in refusals to donate in spain despite non substantial change in the population’s attitude towards donation. Organs, Tissues and Cells 13: 17–24. Emson, H.E. 2003. It is immoral to require consent for cadaver organ donation. Journal of Medical Ethics 29: 125–127. Fabre´, Ce´cil. 2006. Whose body is it anyway? Justice and the integrity of the person. Oxford: Clarendon Press. Fabre´, Ce´cil. 2004. Justice and the coercive taking of cadaveric organs. British Journal of Political Science 34: 69–86. Foster, Charles. 2012. Putting dignity to work. The Lancet 379, June 2 2012: 2044. Geraci, P.M., and V. Sepe. 2011. Non-heart-beating organ donation in Italy. Minerva Anestesiology 77: 613–623. Gruat, Renaud, et al. 2011. Recommandations sur l’information et l’abord des proches des donneurs potentiels d’organes et de tissus de´ce´de´s apre`s arreˆt cardiaque (DDAC), dans l’optique d’un pre´le`vement. Annales Franc¸aises de Me´decine d’Urgence 1: 438–441. Harris, John. 2003. Organ procurement: Dead interests, living needs. Journal of Medical Ethics 29: 130–134. Johnson, Eric J., and Daniel Goldstein. 2003. Do defaults save lives? Science 302: 1338–1339. Kootstra, G., J.H. Daemen, and A. Oomen. 1995. Categories of nonheart-beating donors. Transplant Proceedings 27(5): 2893–2894. Lippert-Rasmussen, Kasper. 2008. Against self-ownership: There are no fact-insensitive ownership rights over one’s body. Philosophy and Public Affairs 36: 86–118. McGee, Andrew John, and Benjamin Peter White. 2013. Is providing elective ventilation in the best interests of potential donors? Journal of Medical Ethics 39: 3. Miller, Franklin G., and Robert D. Truog. 2012. Death, dying, and organ transplantation: Reconstructing medical ethics at the end of life. Oxford, New York: Oxford University Press. Munjal, Kevin G., P. Stephen, Lewis R. Goldfrank, Alexander Gilbert, Bradley J. Kaufman, and Nancy N. Dubler. 2013. A rationale in support of uncontrolled donation after circulatory determination of death. Hastings Center Report 43(1): 19–26.
What does ‘‘presumed consent’’ might presume? Nelson, James Lindemann. 2011. Internal organs, integral selves and good communities: Opt-out organ procurement policies and the ‘separateness of persons’. Theoretical Medicine and Bioethics 32: 289–300. Pen˜a, Lorenzo, and Txetxu Ausı´n. 2001. La inferencia de hechos presuntos en la argumentacio´n probatoria. Anuario de Filosofı´a del Derecho 18: 95–128. Potts, Michael, Joseph L. Verheijde, Mohamed Y. Rady, and David Ewans. 2010. Normative consent and presumed consent for organ donation: A critique. Journal of Medical Ethics 36: 498–499. Rodrı´guez-Arias, David, Iva´n Ortega-Deballo´n, M.J. Smith, and S.J. Youngner. 2013. Casting light and doubt on uncontrolled DCDD protocols. Hastings Center Report 43(1): 27–30. Rippon, Simon. 2012. How to reverse the organ shortage. Journal of Applied Philosophy 29: 344–358. Rubertsson, Sten, David Smekal, Tibor Huzevka and Jakob Johansson. 2007. Mechanical chest compressions with the LUCAS device does not increase the incidence of injuries in cardiac arrest victims. Circulation 116: II_930. Rosen, Michael. 2012. Dignity: Its history and meaning. Cambridge, MA, London: Harvard University Press.
Rubenfeld, Gordon B. 2004. Principles and practices of withdrawing life-sustaining treatments. Critical Care Clinics 20: 435–451. Saunders, Ben. 2010. Normative consent and opt-out organ donation. Journal of Medical Ethics 36: 84–87. Scandroglio, Barbara, Beatriz Domı´nguez-Gil, Jorge S. Lo´pez, Marı´a O. Valentı´n, Marı´a J. Martı´n, Elisabeth Coll, Jose´ M. Martı´nez, Blanca Miranda, Marı´a C. San, and Rafael Matesanz Jose´. 2011. Analysis of the attitudes and motivations of the Spanish population towards organ donation after death. Transplant International 24: 158–166. Simo´n, Pablo. 2002. El consentimiento informado: Abriendo nuevas brechas. Problemas pra´cticos del consentimiento informado, 11–62. Barcelona: Cuadernos de la Fundacio´ Grı´fols i Lucas. Talbot, David, and Anthony D’Alessandro (eds.). 2009. Organ donation and transplantation after cardiac death. Oxford: Clarendon Press. Thaler, Richard and Cass R. Sunstein. 2009. Nudge: improving decisions about health, wealth, and happiness. Penguin. Ullman-Margalit, Edna. 1983. On presumption. The Journal of Philosophy 80: 143–163.
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SCIENTIFIC CONTRIBUTION
What does ‘‘presumed consent’’ might presume? Preservation measures and uncontrolled donation after circulatory determination of death Pablo de Lora
Springer Science+Business Media Dordrecht 2014
Abstract One of the most controversial aspects in uncontrolled (out-of-hospital) donation of organs after circulatory death (uDCD) is the initiation of preservation measures before death. I argue that in so-called opting-out systems only under very stringent conditions we might presume consent to the instauration of those measures. Given its current legal framework, I claim that this is not the case of Spain, a wellknown country in which consent is presumed—albeit only formally—and where uDCD is currently practiced. Keywords Donation after circulatory death Presumed consent Ante-mortem measures Best interests Introduction Death precedes cadaveric organ donation, but people might be pronounced dead either by cardio-circulatory or A preliminary version of this paper was presented at the 6th International Conference on Organ Donation after Circulatory Death, organized by the European Society of Organ Transplantation in Paris on February 2013 and at the ‘‘Encuentro sobre donacio´n en asistolia, reanimacio´n cardiopulmonar no convencional y bioe´tica’’ held at the Centre for Social and Human Sciences of the Spanish Research Council (CSIC, Madrid) on March 2013. In this seminar I received helpful feedback by Lorenzo Pen˜a and David Rodrı´guez-Arias who also read a first draft of the article and helped me to improve it substantially. Kevin Kriz made critical linguistic corrections and I thank him for his help. I am also grateful to the anonymous reviewers who read the first draft. This article is part of a research project funded by the Spanish Ministry of Science and Innovation (‘‘Las dificultades de la democracia: entre polı´tica y derecho’’, DER-200908138/JURI). P. de Lora (&) Department of Legal Philosophy, Law School, Universidad Auto´noma de Madrid, 28049 Madrid, Spain e-mail: [email protected]
neurological criteria. According to the Uniform Definition of Death Act of the USA (1981), death is caused either by (1) the irreversible cessation of circulatory and respiratory functions, or (2) the irreversible cessation of all functions of the entire brain, including brain stem. Similar legal definitions are found in many legal systems across the world.1 The circumstances in which the irreversible cessation of circulatory and respiratory functions occurs, delineates a well-known distinction between controlled and uncontrolled cardio-circulatory death.2 Thus, a patient might sustain cardiac arrest while brain dead (type IV in Maastricht’s classification) or as the accepted outcome of the decision to withdraw life-sustaining treatments (type III). Because, in those cases, cardio-circulatory death happens at the hospital ward or at the intensive care units, the eventual organ donation is labeled as ‘‘controlled donation after cardiac—or circulatory—death’’ (hereafter cDCD). When the cessation of the cardiorespiratory function follows an unsuccessful resuscitation outside a hospital setting, the subsequent donation is called ‘‘uncontrolled donation after cardiac—or circulatory—death’’ (hereafter uDCD). Donation after cardiac death has increased significantly in the last years3 not without controversy as regards to its 1
See, for one, article 9.2. of the Spanish Real Decreto 1723/2012. These labels pertain to the so-called ‘‘Maastricht classification’’ of non-heart beating donors; see Kootstra et al. (1995). Since the First International Workshop on DCD in which the classification was proposed, the taxonomy has been amended due to several medical refinements in the procedure. For the latest addition, see Geraci and Sepe (2011, 614). 3 For the European data see Domı´nguez-Gil et al. (2011). In the US, according to Munjal et al. (2013) although the number of cDCD has increased over the years, still accounts for only 10.6 % of all deceased donors. 2
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compatibility with the so-called ‘‘dead donor rule’’.4 In this essay I will set aside the ethical and legal debates that cDCD has prompted and focus instead on uDCD. One of the key disputes over uDCD lies in the instauration of ante-mortem and postmortem measures once cardiopulmonary resuscitation has been declared unsuccessful. Those measures—intubation, cardiac compression, venous accesses, heparinization, cannulation and ECMO— are aimed at the optimization of organ recovery, not rendering any clinical benefit for the individual who has suffered the cardiac arrest.5 When donation follows the withdrawal of life-sustaining treatment in the hospital setting, the initiation of preservation measures seems straightforwardly justifiable as the consequence of previous consent of the patient and/or the family. However, outside the hospital scenario, due to time constraints in order to avoid the effects of warm ischemia, it is much more difficult to contact the family or gather information about the individual’s past wishes.6 In Spain, the only member of the Council of Europe along with France in which uDCD has been developed7, the justification of preservation measures is built upon the fact that the Spanish transplantation system is one of ‘‘opting-out’’. My aim in the following pages is to question the assumption that, once presumed consent to donate is accepted, Spaniards have also given consent to everything that might precede it.8 In order to do so I will structure the paper in the following way. In the first part I will clear the conceptual field in regards to the concept of a legal presumption and the notion of presuming consent. Secondly I will argue that so-called systems of opting-out (or opt-out) or opting-in (or opt-in) encompass many different institutional schemes for procuring organs and that, relative to those differing features, the value of individual autonomy is more or less honored and the procurement system is more or less akin to a model of organs’ conscription.9 In the third part of the essay I will focus on the Spanish legal
framework for organ donation, a system assumed to be one of opting-out but with significant deviations from the ideal model, and most importantly, with traits that, in my view, preclude the possibility of presuming consent for antemortem measures in uDCD. My conclusion will therefore be that the justification for the initiation of organ-preserving measures in uDCD based on presumed consent is flawed under current Spanish law.
The nature of a legal presumption Presumptions abound in legal systems because, for a host of different reasons, we often need to deem as certain what we are uncertain about.10 In a strict sense, one can only presume what is likely to happen or have happened (Pen˜a and Ausı´n 2001, pp. 97, 105–106). Legal systems and legal commentators, however, use presumptions in a much looser and more pragmatic fashion. Some rules about presumption aim to lay down a procedural truth, not what has likely happened but what ought to be taken as proven in an institutional context such as a trial (Aguilo´ 2006, pp. 16–17, 19). Consider for one innocence presumption in a criminal procedure. As a guarantee against governmental abuse, individuals are presumed innocent unless proven guilty beyond a reasonable doubt. So when the jury acquits the defendant it is not because they have found the accused more likely to be innocent, but rather because the prosecution could not fully ascertain the defendant’s culpability. In this first sense the presumption is tantamount to a rule which assigns the burden of proof following normative or value-related reasons. And it does so in the following way: granted that the jury or the Court is susceptible to be mistaken either because the defendant was actually innocent or because it was actually guilty, we, as a society, deem it preferable that our institutions err in acquitting who is actually guilty.11
4
For an overview of the terms of the discussion, see Miller and Truog (2012, pp. 52–79). 5 For a comprehensive survey of those measures in the transplantation literature, see Bastami et al. (2012). 6 As opposed to the procedure followed in Spain and France, the current New York City Protocol for uDCD explicitly sets a period of 15–20 min after the declaration of death in which it is attempted to contact the family. Only after that period, the body is rushed to the hospital in order to initiate organ preservation measures; see Munjal et al. (2013, p. 23). For the contrast with Spain, see Rodrı´guez-Arias et al. (2013). 7 See Domı´nguez-Gil et al. (2011). 8 That opting-out equals ‘‘presumed consent’’ is a constant tenet in the transplantation literature; see, for one, Johnson and Goldstein (2003, pp. 1338–1339). 9 By organs’ conscription I mean the possibility of the Government taking organs from dead people regardless of their previous consent.
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10
The Law, occasionally, grants truth-value to what is patently false. In that case a ‘‘legal fiction’’ emerges. The famous fictio legis Corneliae of Roman Law is a poignant example: Roman soldiers who were captured and enslaved were considered dead because only free men were capable of making a will. 11 In this I am closely following the classical article by Edna UllmanMargalit (1983). Consider the related area of the withdrawal of lifesustaining treatments. The landmark US case of Cruzan v. Missouri is a clear paradigm of the same error-assessment that leads to tip the balance in favor of withholding artificial nutrition and hydration: the US Supreme Court considered that because the err of withdrawing life-sustaining treatment to a patient who wanted to remain alive was more serious (for its irreversible nature) than keeping alive the patient who actually rejected extraordinary measures, it could be presumed that withholding artificial nutrition and hydration aligned with the best interests of the patient; see 497 U.S. 261, 283 (1990).
What does ‘‘presumed consent’’ might presume?
Another example from a different domain is in order: how should we decide when there is uncertainty about the timing of an individual’s death who happens to be the inheritor of someone else who died in the same event? In these cases it is critical to know who survived longer and whether or not the property was transferred from the person who died to the survivor. In many jurisdictions, absent clear evidence the Law presumes a simultaneous death placing the onus on the inheritance’s claimant.12 As Alta Charo has said: ‘‘… the simultaneous death statutes are creating presumptions of law, not simply setting forth permissible inferences of fact from clues like extended absence’’ (1999, p. 283). Again, it is not statistics or the commonness of certain events, consequences or states of affairs what provides the underlying justification for the presumption. And yet, when presuming something the Law might indeed attribute relevance to some facts (either natural or conventional), the common experience, or hinge upon inductive-probabilistic considerations in order to assume the existence of certain rights, duties or states of affairs.13 In Ullman-Margalit’s jargon this is a ‘presumption-raising fact’ (1983, pp. 147, 157). If a child is born in wedlock within 6 months after the wedding the husband is presumed to be the father.14 The presumption is certainly rebuttable, but a social regularity makes it reasonable to use that fact as a default rule in the attribution of parental rights and duties. Finally, we are frequently in need to assign value to silence or omission whenever citizens or public officials are requested to act in a certain way (Ullman-Margalit 1983, p. 154). For instance, every year Spaniards are called to fulfill their income tax form and are asked to consign whether part of their taxes will finance the mission of the Catholic Church or rather contribute to sustain general social needs beyond those already satisfied by the Government. Not checking any of those boxes implies that Spaniards accept the latter goal. We are all perfectly aware of such outcome because we are warned of the default choice that follows our silence. This type of presumption is generally justified for pragmatic reasons.15
Is opting-out merely a legal presumption in favor of organ donation? Although, as we have seen, presumed consent has a manifold nature, in the case of organ donation it is built on three critical presuppositions: (1) the individual whose consent is presumed has to be competent (nothing can be presumed from someone who is unable to exercise autonomy), (2) the presumed donor is aware of the alternative courses of action16 and, last but not least, (3) the individual is bearer of post-mortem interests that ought to be honored to the greatest extent possible. Now, according to what I have mapped out in the previous section, opting-out systems can be first conceived of as embracing a legal presumption which favors donation based on some ‘‘presumption-raising fact’’. For example that people generally, when asked, is inclined to donate.17 Secondly, opting-out systems may alternatively be interpreted as the expression of a normative preference about whether to err on the side of harvesting organs against the wishes of the deceased or frustrating a wish to donate. Presuming consent means, in this case, a preference for the first kind of mistake (i.e. taking organs from someone who would not have consented if asked).18 Lastly, the presumption to donate might be characterized as the public response to a formal call. In this case, depending on the value assigned to non-response, presumed consent actually turns into tacit consent. A slight change in the way in which we put the question regarding whether to donate or not makes all the difference. Compare these two possibilities: ‘‘check the box if you want to participate in the organ donation program’’ as opposed to ‘‘check the box if you don’t want to participate in the organ donation program’’. Silence is equivalent to acceptance only in the latter case which pertains to an ‘‘opting-out’’ system, but not in the former which corresponds to an ‘‘opting-in’’ model. And yet, still we can’t be absolutely positive that there is a perfect match between silence and consent: what if the individual simply overlooked the box? Before we move forward to assess the conditions under which consent for organ donation and for ante-mortem measures in uDCD is presumed in Spain, a final remark on 16
12
See for example article 33 of the Spanish Civil Code. 13 Think about the official declaration of someone’s death after a prolonged period of absence or following a catastrophic event. Many legal systems convey rules for that purpose (see for example articles 193 and 194 of the Spanish Civil Code). 14 Ullman-Margalit brings the example (1983, p. 144) but it is actually incorporated in the Spanish Civil Code (article 117) as well as in many other Codes. 15 According to den Hartogh, this presumption may be better conceived of as ‘‘tacit consent’’ more than ‘‘presumed consent’’ (2011a, b, c p. 298).
Pablo Simo´n has emphatically affirmed that: ‘‘With no previous information there is no consent’’ (2002, p. 36). 17 This fact, sustained by public polling, has prompted the demand for the establishment of an opting-out system in the UK although it has been finally discarded. A similar asymmetry between the wish to donate and the actual opting-in system has been documented in Iowa; see Thaler and Sunstein (2009, p. 178). 18 For den Hartogh, we never err when not removing organs absent consent, simply because consent, as a mental state, cannot be presumed. Not removing organs when the deceased has not expressed his preference makes us always be in the safe side (den Hartogh 2011a, b, c, p. 302).
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the nature of presumed consent is in order. Presumed consent has a ‘‘fictional’’ nature when construed as a hypothesis about how organ donation actually aligns with the overall personality and way of thinking of the deceased. We can always hypothesize whether the deceased would have wanted to donate absent his clearly expressed preference while alive. It is precisely for that reason that clinical teams approach the family or collect testimonies from his/her acquaintances. In this case a ‘‘mental state conception’’ of presumed consent is presupposed because the reality is that the deceased did not actually display any action in order to express his/her will. A nice example by den Hartogh reinforces this point. Suppose you request your dear neighbor to be so kind to borrow her car and the answer is: ‘‘Let me think about it. I might need it tomorrow to go to work, although it is unlikely’’. The next morning you see that she takes the bus leaving the car in the garage. You approach her husband and ask for the keys telling him that she ‘‘consented’’. Had she really? You might infer her mental state of accepting your using the car from what she said and did, but the presumption is defeasible: maybe she just forgot about it and would not have consented had you asked her again. It seems to make a whole lot of a difference had she said: ‘‘Of course, take it. Here are the keys’’. Admittedly, a mental state conception of consent misses a salient feature of our moral and legal autonomy: the sovereign aspect of our being entitled to determine what is in our best interests and what those interests require. This is why den Hartogh has claimed that in the phrase ‘‘presumed-consent’’, consent is simply a fiction, a rhetorical device (den Hartogh 2011a, b, c, p. 300). And yet, if we stick with the example, it also makes a huge difference had the neighbor said: ‘‘No, I am sorry but I can’t lend you my car’’. So even if presuming consent runs a certain risk of misreading the agent’s intentions, the hints of a situation might, albeit non-conclusively, attribute a certain disposition, or even a tacit consent, to the individual who was asked. Imagine your neighbor responding: ‘‘Mmm I don’t think is going to be possible… It is very likely that I will need my car tomorrow… I’ll let you know first thing in the morning’’. It could be the case that she finally would have lend you the car—maybe she just forgot about the whole issue—, but ultimately she did not ‘‘let you know’’. Thus, it is perfectly presumable to conclude that she did not consent to your taking the car, although, from a ‘‘mental standpoint’’ she actually did. Some conclusions follow from the previous discussion: different sorts of presumptions are at play in opting-out systems, and, therefore, opt-out (and conversely opt-in) is too broad a label to describe the complexity of institutions, policies and social practices that underlie the use of cadaveric organs. Take for instance the reconstruction of opting-out systems made by Ben Saunders: the act of
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opting out should be conceived as a conscientious objection against a general duty to donate (2010; pp. 84–87).19 Under that interpretation, an opt-out system is no different from a system of ‘‘routine removal’’ of cadaveric organs (Potts et al. 2010, p. 499).20 We depart from such confiscatory policy once we start factoring in different aspects of the procedure to become an organ donor that give us opportunity for dissent. Think about whether potential donors are advised and called to make a choice throughout a public procedure, what is sometimes labeled as ‘‘mandatory choice’’21; whether citizens are given a deadline to choose22; whether there is some official registry in which to register the refusal or acceptance23; whether individuals are clearly instructed about the default option; whether they are fully (or less than fully) or neutrally (or less than neutrally) informed regarding donation or rather persuaded to donate,24 and whether the family has veto capacity. Taking all those features into account we get a wide spectrum of procedures that goes far beyond the rough distinction between being ‘‘in’’ or ‘‘out’’ for organ donation purposes. And yet, notwithstanding on which side of the spectrum the actual procedure lies, consent seems to be doing the normative work; either because it is presumed or required, consent is valued.25 This is the reason why, according to James Childress: ‘‘To be ethically acceptable, a policy of presumed consent would require widespread and vigorous public education to ensure understanding, along with clear, easy, non-burdensome, and reliable ways for individuals to register dissent’’ (2006, p. 210).26 Up to this point I have been describing a model that, either in the version of opting-in or opting-out, has gained universal acceptance because it is based on consent. Currently there is no legal system in the world that dispenses with the deceased’s consent—or the authorization of the next-of-kin- for the sake of procuring organs. But the truth is that we could altogether circumvent consent. Organs’ removal for transplantation purposes has a neat justification beyond consent based on the compelling interests of 19
See Also Nelson (2011), p. 290). See also Childress and Liverman (2006). 21 See for instance the procedure followed in The Netherlands or Germany as described by den Hartogh (2011a). 22 Even in those cases in which choice is mandatory and there is some time to make up one’s mind, there is a necessity to set a default option in the meantime; see den Hartogh (2011a, b, c, p. 295). 23 Which is the case of Belgian law; see den Hartogh (2011a, b, c, p. 306 n. 42). 24 This is the model called ‘‘presumptive approach’’ by Simon Rippon (2012, pp. 344–345). 25 In this I am closely following den Hartogh’s approach (2011a, b, c, p. 296). 26 My italics. More recently, in the same vein, Baumann et al. (2013). 20
What does ‘‘presumed consent’’ might presume?
potential recipients and the pivotal fact that the bearer of the right to corporal integrity has died (Harris 2003; Fabre´ 2004, 2006; Delaney and Hershenov 2009a, b; Emson 2003) or is ‘‘as good as dead’’.27 There is a moral case for organ’s conscription, even an unproblematic one, according to some (Lippert-Rasmussen 2008, p. 100 n. 32), and if I point out this possibility is because the fact that a particular system of presumed consent slips closely towards the confiscatory model does not overly invalidate it for that reason. Organs’ conscription might be justified albeit not under the guise of presuming consent.
The Spanish case: opting-out and organ-preserving measures In the previous section I aimed to clear the conceptual field surrounding the opt-out models of organ donation. Now, I will turn to the Spanish transplantation system as regards to preserving measures for uDCD. My goal is to assess whether those measures might be presumed given the way in which consent for donation is legally presumed in Spain and taking into account the legal principles and rules that explicitly or implicitly inform the Spanish legal system as a whole. In Spain, as I said, there is a legal presumption in favor of organ donation since 197928 but the practice that has followed ever since has been to ask for the family’s consent (Domı´nguez-Gil et al. 2010, pp. 17–18).29 At the time in which the opt-out system was legally enshrined there were no data showing that a majority of the Spanish citizens were more prone to donate, so the legal presumption was established in a sociological vacuum. Some of the representatives who gave their support to the Act in 1979 greeted what they thought was a significant leap towards the seizure of human corpses by society.30 Subsequent surveys have shown that our attitude pro-donation does not substantially depart from what is common in other countries in which
27
I borrow the expression from Robert D. Truog and Franklin G. Miller. Being ‘‘as good as dead’’ points to the fact that the individual is in a clinical trajectory of imminent death with no hope of recovery. In their own words: ‘‘An individual is as good as dead when he is in a situation in which it is appropriate, in some respect, to treat him as if he were dead’’ (Miller and Truog 2012, p. 144). 28 Ley 30/1979 (article 5.2.). This legal provision has been incorporated in subsequent ‘‘Reales Decretos’’ (legal norms coming from the Government which are of an inferior legal hierarchy than ‘‘Leyes’’ (Acts). 29 Following Govert Den Hartogh’s taxonomy, that makes our system one of ‘‘imperfect opting-out’’ ( 2011b, p. 260). 30 That was the case of the member of the Communist Party, Miguel Nu´n˜ez Gonza´lez; see Diario de Sesiones del Congreso de los Diputados, no 26, July 27th 1979, p. 1453.
opting-in is the norm.31 In 2004 Catalina Conesa Bernal et. al. showed that 75 % of the people asked were against presumed consent. Even more interestingly for my purposes, the conclusion of a recent study conducted by significant members of the Spanish Organizacio´n Nacional de Trasplantes (ONT) reveals that only half of the individuals who were interviewed would allow organ recovery from a deceased close family member if his or her wishes were unknown. A significant 25 % would not allow the recovery and the other 25 % does not answer (Domı´nguez-Gil et al. 2010 p. 22). Last but not least, according to the latest Eurobarometer on organ donation and transplantation in Europe, only 21 % of Spaniards know the basic facts of the Spanish legislation on organ transplantation. Given that reality, the Spanish opt-out transplantation system cannot be built on any raising-fact presumption. On the other hand, the Spaniards’ presumed consent is neither understandable as a ‘‘tacit acceptance’’ of donation after death. The Spanish’ institutional scheme (norms and practices) for organ donation precludes that interpretation: Spain lacks any official registry specifically built to record organ donation refusals, as opposed to Austria, Belgium, Hungary, Poland, Portugal, and Sweden which are also opting-out countries.32 Contrary to countries such as Germany or The Netherlands, Spanish citizens are not called to give their consent under any warning of their silence being equivalent to acquiescence. Spaniards are not previously informed about the relevant aspects concerning donation and transplantation. If it were not for the fact that families have the final say and judges play a subsidiary role, our opt-out system would be one of organ conscription very much resembling the practice of autopsy. Having depicted the institutional and sociological background of the Spanish transplantation system, let us resume our main discussion, whether consent for antemortem measures in uDCD might be presumed if consent for organ donation is legally presumed. In the much-quoted report Organ Donation. Opportunities for Action issued by the Institute of Medicine of the United States, it is stated that in those countries in which an opt-out system has been established: ‘‘… consent for cannulation and cold perfusion 31
In the study conducted by Scandroglio et al. roughly 60 % of those interviewed were willing to become organ donors; see Analysis of the attitudes and motivations of the Spanish population towards organ donation after death (2011, p. 159). Similar data is reported by Domı´nguez-Gil et al. (2010, p. 21). It is striking that, despite the success of the Spanish transplantation system, the percentage of people willing to donate has not significantly increase since 1999. In the Special Eurobarometer no 333 ‘‘Organ Donation and Transplantation’’ issued by the European Commission in June 2010, Spain appears well behind many other European countries in willingness to donate. 32 However, Croatia and Norway also lack official registries. I owe David Rodrı´guez-Arias this information.
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may be presumed… the committee regards the use of preservation techniques while families are contacted—for the purpose of preserving the family’s opportunity to make their own informed decision regarding donation—to be ethically acceptable in principle’’ (2006, pp. 153–154).33 This justificatory strategy was also adopted in the ‘‘Documento de Consenso Nacional 2012’’ issued by the Spanish National Transplant Organization34 and has subsequently been incorporated in the most recent piece of the Spanish transplantation law: the Real Decreto 1723/2012 (article 9.1.a). The way in which uDCD proceeds in Spain is, according to the Real Decreto, roughly as follows: once the standard CPR has been declared unsuccessful by the emergency services, the patient is rushed to a hospital able to harvest organs.35 On the way, cardiac massage and intubation is kept just for the sake of optimizing the chances of a successful transplantation. Only when the patient arrives at the emergency room and the critical care physician corroborates the absence of pulse, death is officially declared. An authorization to initiate preservation measures is then requested from the judge who has 15 minutes to respond.36 His or her silence is taken as a tacit approval to the procedure. With all the preservation measures already in place, the family, once at the hospital and once informed about the death of the next-of-kin is asked for consent to donate.37 One of the arguments that might be raised to consider that preservation measures are covered by our overall 33
In the same vein see Bonnie et al. (2008, p. 741). Donacio´n en asistolia en Espan˜a. Situacio´n actual y recomendaciones, pp. 120, 153–154, 197. 35 As Rodrı´guez-Arias and colleagues have said, this decision is ‘‘strategic’’ (2013, pp. 27–28). As opposed to the French protocol, according to which the emergency team should proceed with absolute transparency, in Spain the family who might be present at the scene of the cardiac arrest and during the resuscitation maneuvers, is not likely to be told the true purpose of the subsequent clinical procedures. 36 In Spain, as in many other countries, individuals are able to sign a living will where they document the sort of care they are willing to receive at the end of life. Those advanced directives can be registered in public registries. It is doubtful, to say the least, that judges or members of medical teams rushed by the events in uDCD are really able to look up whether the person did register any provision regarding what should be done with his body after death or in the imminence of death. 37 It is important to stress the fact that this consent is not legally required, although, since the very beginning of organ transplantation in Spain, the practice has been to ask the family for consent and to respect the denial to donate, even if legally speaking the transplantation team could have proceeded with the organ’s removal absent the explicit opposition of the deceased (see supra). The Spanish legislation does not provide a family veto: if the next-of-kin is consulted is just for the purpose of knowing the patient’s wishes or expressed rejection to donate. I am grateful to an anonymous reviewer for suggesting me to clarify this ambiguity in the text. 34
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presumed consent to donate is the fact that we do not and should not give specific (or, for the case, tacit) consent to every step that is part of a medical procedure to which we give consent. It goes without saying that if I consent to an appendectomy I certainly consent to the surgical incision that is necessary in order to remove my infected appendix.38 Is this a proper analogy? I think not. As Browne et al. have argued in the similar context of the initiation of ‘‘elective ventilation’’ (2000, p. 49), people in general are not aware that a relation of entailment holds between the array of measures that should be put in place in the out-ofhospital scenario and the donation of organs. More importantly, some of those decisions are morally problematic if we take into account that the clinical measures are not made in the benefit of someone who is still, at least legally, not dead. As I pointed out at the beginning, antemortem procedures to procure organs in uDCD are in clear contravention to the Convention on Human Rights and Biomedicine established by the Council of Europe (also known as the ‘‘Oviedo convention’’) which, in article 6.1., states that: ‘‘… an intervention may only be carried out on a person who does not have the capacity to consent, for his or her direct benefit’’. The Additional Protocol to the Convention on Human Rights and Biomedicine concerning Transplantation of Organs and Tissues of Human Origin reinforces this commitment with the principle of beneficence and the preeminence of consent.39 In the very close debate on ‘‘elective’’ or ‘‘non-therapeutic’’ ventilation in the UK it has been argued that initiating measures which are not any longer for the clinical benefit of the patient (such as artificial ventilation) but for the eventual benefit of the organ’s recipient, might nevertheless be in the best interests of the patient if we expand the notion of ‘‘interests’’ beyond the strictly medical aspects. 38
In the somewhat different context of withdrawing life-sustaining measures in an end-of-life care scenario, such ‘‘over-information’’ might even be uncompassionate; see Rubenfeld (2004, p. 439). 39 See article 17. An anonymous reviewer warned me about the importance of considering the Additional Protocol. Although the value of personal autonomy is not absolute its preeminence in the current practice of Medicine is hardly questionable. From an institutional point of view clinical procedures performed without consent for the benefit of others are absolutely exceptional. Compulsory vaccination for public health reasons is probably one of those very few cases and is legally enshrined in some jurisdictions. But this is not the case of organ donation. According to the Oviedo Convention (article 20) and its additional Protocol, minors can only make living donation of tissue—blood or bone marrow—under very stringent conditions and the living donation of organs seems forbidden in absolute terms, even for the sake of saving their siblings’ lives, for example. As I said, from a moral stance which is not rights-based, people—its interests or life-plans—might be sacrificed for the sake of the greater good. Dealing with such justification for a radical change in the way we proceed with organ transplantation clearly exceeds what I attempt to do here.
What does ‘‘presumed consent’’ might presume?
Thus, if the patient wished to donate, non-therapeutic ventilation, although lacking clinical benefit, is the means to fulfill the patient’s posthumous will (Coggon 2013, p. 132). However, as McGee and White have said, considering that initiating elective ventilation or, in our case, the uDCD protocol, is always in the best interests of everyone subverts the idea of best interests. The reason is quite simple: best interests should be conceived of in a case-by-case basis, that is, in a subjective fashion (McGee and White 2013). What is in your best interests might not be in mine. As I said before, the Institute of Medicine considers that it is in principle justifiable to extend the donation presumption to ante-mortem measures. However, it also affirms that for donor consent to be valid and capable of being used as an advanced directive, the general public needs to be provided with accurate information about all aspects of organ transplantation (2006, p. 182). This has not been the case in Spain, if only for the fact—not to be lightly taken—that the decision to presume our acceptance to ante-mortem measures in uDCD does not come from a legislative Act but from a governmental Decree. And this is not a legalistic detail to be dismissed as an anecdotal technicality. The difference is crucial because, as citizens, Spaniards have not been given the opportunity to witness deliberation and divergent perspectives on the issue. A Decree in Spain is enacted by the Council of Ministries (the equivalent of the US Secretaries of State), whose meetings lack public exposure and official records. By way of contrast, in an opt-in country like the Netherlands, the decision to allow the initiation of preservation measures without the family’s consent—albeit with previous consultation of the official Registry—, was adopted by the Parliament in the Dutch Transplant Act of 1998 (Talbot and D’Alessandro 2009, p. 272).
Conclusion Being truly and genuinely informed about the preservation techniques and the protocol that is followed in uDCD seems the prerequisite for our lack of refusal to count as properly presumed consent. Thus, ante-mortem measures in Spain cannot be presumed to have been consented by the citizenry who is, by and large, absolutely unaware of the out-of-hospital procedure in uDCD and its potential clash with the way in which many might want to die. Still one could insist that no harm is really inflicted to the almost-dead patient40 and, on the other hand, much benefit is obtained. What interest can people raise to oppose a decision to be transported to a specific hospital, 40
I thank an anonymous reviewer for pressing me to deal with this point.
be applied chest compression, remain intubated, be administered heparin, cannulated and plugged to an ECMO device once dead? At the end of the day, it is the principle of non-maleficence what grounds the admissibility of antemortem measures in uDCD protocols. Two responses are in order. The first has to do with the notion of harm and its relevance. Harmful actions do not exhaust the domain of unacceptable conduct. The finegrained distinction between harming and wrongdoing is poignant in this discussion, and the treatment that we owe to cadavers—or individuals who lack the capacity to suffer such as early-stage fetuses or embryos—is the best example that I can provide to illustrate that even when there is no direct harm, still our behavior might be considered morally wrong.41 There is no uncontested evidence that a patient who suffered cardiac arrest is harmed while being the subject of ante-mortem measures. However, chest compression is an aggressive procedure that can cause serious injuries when performed either manually or by mechanical gadgets such as the LUCAS device (Rubertsson et al. 2007). Sternum and costal fractures are frequent although it is debatable whether an unconscious patient suffers as a result of those maneuvers. But what about the family who might witness the resuscitation effort, its persistence, the subsequent rushing to a hospital—not any hospital in the way—with an intimate hope of recovery but who might not be explicitly warned that such clinical display has the only purpose of making his next-of-kin a suitable organ donor? In a significant move, the French Agence de la biomedicine, the Socie´te´ franc¸aise d’anesthe´sie et de re´animation (Sfar), the Socie´te´ franc¸aise de me´decine d’urgence (SFMU), the Socie´te´ de re´animation de langue franc¸aise (SRLF) and the Samu–Urgences de France have changed their original uDCD protocols and recommended giving in situ accurate information to the relatives regarding the donation possibilities (Gruat et al. 2011).42 I would further argue that the objection based on nonmaleficence misses a relevant aspect of our conception of consent, what I previously called, in tune with den Hartogh’s approach, the sovereign dimension of autonomy. It is simply because it is us who say ‘‘no’’ or ‘‘yes’’ that our refusal or acceptance counts, even if we act for absurd, wrong or no uttered reasons whatsoever. Intriguingly enough, the Spanish transplantation Act of 1979 (article 9.1.a) and the subsequent Decrees instruct potential donors 41
What is the harm done to the fetus by flushing him thorough the toilet? (see Michael Rosen 2012, p. 135) or to a woman who, under the effects of anesthesia or because she is in a persistent vegetative state, is subject to vaginal examination by a bunch of medical residents? (the example comes from Charles Foster 2012). Both are instances of wrong, albeit non-harmful, behavior. 42 See supra notes 6 and 35.
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that they can refuse donation of some particular organs and consent explicitly to the donation of others. Thus, we should respect those who feel, for example, some special attachment to their lungs, but not to their kidneys, and therefore refuse lung’s donation. Awkward and arbitrary as it may sound, we accept it in the name of personal autonomy. In a similar vein, individuals might simply want to ‘‘be let alone’’—free of further interventions, devices, drugs, etc.—should they suffer a cardiac arrest outside the hospital. And if they happen to learn about the current quarrels regarding the determination of death they might be willing to exhaust all available means at the hospital for their own—and not others’—benefit. Particularly if they came to know the fact that some individuals have experienced total neurological recovery after being—and because they were—considered organ donors. If they can selectively object to organ donation, should not they also be able to selectively consent to donate after circulatory death only in controlled circumstances, but refuse to donate in uncontrolled conditions? Now, as I have insisted all along the paper, in order to do so first they should be aware of the existence of that protocol and its basic details. Lacking that information, presumed consent is no more than a fiction disguising the temporary conscription of dying people. There might be sound moral reasons to do so, but they are not based on honoring the individual’s will.
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