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Bilateral hand transplantation: Supporting the patient's choice
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Journal of Plastic, Reconstructive & Aesthetic Surgery (2016) xx, 1e5
Bilateral hand transplantation: Supporting the patient’s choice* M. Dumont*,a, L. Sann b, A. Gazarian c Ecole normale supe´rieure, ED 540, 45 rue d’Ulm, 750005 Paris, France Received 25 June 2016; accepted 18 November 2016
KEYWORDS Ethics; Hand transplantation; Autonomy; Informed consent; Decision-making
Summary Bilateral hand transplantation, as a fairly new reconstructive option for amputees, raises major ethical questions. This article, which is based on the reflections arising from the rich experience of Lyon’s team in this field, addresses the topic of supporting the patient in his choice for or against this procedure. How should autonomy be understood in this particular setting? The developing field of composite tissue allotransplantation needs to establish a common thinking on this subject. The article emphasises that, even if it is their right to decide, patients have to be carefully supported to help them make the most consolidated choice possible in this challenging procedure. We deal with the question of the choice between the uncertainty in this innovative procedure and a life-threatening treatment to alleviate a handicap. We outline that the entire process of hand allograft is a unique opportunity for the patients to strengthen and exercise their autonomy in interaction with the medical team. ª 2016 British Association of Plastic, Reconstructive and Aesthetic Surgeons. Published by Elsevier Ltd. All rights reserved.
* This work has been presented in a former version at the December 19the21st 2013 Convention of the Socie ¸aise de ´te ´ franc Chirurgie de la Main (Z French Society for the Surgery of Hand). * Corresponding author. 96 rue Jean Sans Peur, 59800 Lille, France. E-mail address: [email protected] (M. Dumont). a ´cole normale supe Philosophy, ED 540 (E ´rieure, Paris, France). b Paediatrician, president of the Ethics Board of the FemmeMe `re-Enfant Hospital in Lyon-Bron, France. c Orthopaedic Surgery Department, Clinique du Parc Lyon, Lyon, France.
Bilateral hand transplantation is a fairly new reconstructive option for bilateral upper limb amputees. Since the first (unilateral) successful surgery in 1998, it has raised, and still raises, ethical questions. The two main questions are as follows: hand transplantation is almost unique in the world of transplant surgery, in that it offers a significantly disabled patient a treatment, a chance of significantly improved function, but in return for a significant likelihood of shortening his/her life expectancy. The transplanted hands, the acquisition of which is a long process, are liable to be rejected in the long
http://dx.doi.org/10.1016/j.bjps.2016.11.010 1748-6815/ª 2016 British Association of Plastic, Reconstructive and Aesthetic Surgeons. Published by Elsevier Ltd. All rights reserved.
Please cite this article in press as: Dumont M, et al., Bilateral hand transplantation: Supporting the patient’s choice, Journal of Plastic, Reconstructive & Aesthetic Surgery (2016), http://dx.doi.org/10.1016/j.bjps.2016.11.010
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2 run, leading to a new amputation and possibly a new transplantation. These two ethical questions are fairly new in transplantation because the longest survival possible is usually a benefit for the patient, as is a better quality of life, and because the rejection of the transplant, ultimately in a non-vital setting, poses other problems than in the case of a vital organ. The non-vital nature of this treatment thus bypasses some complications that are encountered in other transplants: the direct or indirect side effects, lifelong immunosuppressive therapy essential to the survival of the grafts, and chronic rejection in the long run. How can we then establish the reasonable nature of such a treatment? What are the ethical criteria that need to be considered before committing to it? To understand the reasonable and legitimate nature of hand transplantation, we need several elements: a calculation of the risks and benefits for the patient in as much detail as possible, which entails a fine understanding of the bilateral amputee’s life and of his/her transplant request; we also need to ensure that the patient’s decision is strengthened and realistic; and finally, such a decision is not without requirements from the medical team itself. This would not be about studying the issue of the risks and benefits, which has already been studied elsewhere,1 but rather about studying the criteria of a reasonable choice on the patient’s part and the constraints that fall to the team for this, both in terms of supporting his/her decision and of ethical commitment in the treatment. How can we support patients in their choice of hand allotransplant?
Criteria of reasonable risk-taking by the patient supported by the team The absence of urgency to decide When facing the important risks and constraints involved in bilateral hand transplant, the patient’s resolve is essential. It is then essential that the medical team test the realistic nature of the transplant candidate’s expectations and help him/her get such realistic expectations. It is known that trauma victims who lose some part of their body and some related functioning react by taking risks because of loss aversion. Therefore, in this respect, they may underestimate the risks.2 They can also face the treatment in a spirit of misplaced revenge towards a fate that was unfair to them when depriving them of their hands. The functional, psychological, and existential repercussions of the amputation are deep and require guidance first before any suggestion of a transplant possibility. It is then essential that some time be given to the patients, time to make an effort to adapt to the trauma that they went through, get the treatments available aside from a transplant (namely prosthesis) and embrace their new condition as well as possible and its limits and possibilities. Faced with the risks incurred as part of the transplantation, it seems in fact that being able to manage without hands would be preferable. It is nevertheless possible that a transplantation be requested afterwards, a request that will have to be both examined and guided.
M. Dumont et al.
A choice under uncertainty Patients who ask for a bilateral hand transplant must give their informed consent. It is then essential that predictable risks and benefits are presented to them honestly while ensuring that they understand the different aspects of the treatment, particularly the possibility in the long run of chronical rejection of hands that would be theirs only for a while. The difficulty here is that the risks and benefits are tinged with uncertainty, as is the case with essentially every treatment, but most significantly with an innovative treatment such as hand transplantation. Even if the immediate risks are quantifiable, risks of the surgery itself, risks of the long-term effects of the immunosuppressive therapy, and the chronical rejection risk is still difficult to assess; it is nonetheless a possibility and has already once led to the removal of the allograft.3 The benefits, even if the results are likely to be reproducible, have a greater uncertainty because of the small number of patients treated as of now. It is then about considering even the possibility of a comparatively weak advantage to assess the reasonable nature of the initiative. Thus, we find ourselves in a situation where a fully informed consent seems impossible to attain. Indeed, enlightening a situation perfectly would come down to reducing the part of choice it involves to nothing: if we were capable of enlightening the different options of a choice and their respective consequences perfectly, the choice to be made would clearly appear on its own and be obvious: ‘if I always saw clearly what was true and good, I should never have to deliberate about the right judgement or choice’,4 said Descartes. Then we would not have to decide but actually only consent to what would be, from this point forward, as obvious evidence. It is nonetheless possible to refuse even an obviously better choice, and we still have to validate it. In such a case, we still need the essential step of consenting to this option, particularly in a medical context where this is done on ourselves for our own benefit but by someone else. Descartes emphasised this essential role of one’s will to accept to give momentum to the option that clearly appears as being the best: ‘when an obvious reason pushes us to one side, morally speaking, we can hardly choose the opposite side, however in absolute terms, we can. Indeed, it is always possible to stop ourselves from going after a clearly known good or to admit an evident truth, provided we think it is something good to assert our free will in this way’.5 However, in a situation where there is still uncertainty, as is the case with any medical initiative and even more so with innovative surgeries such as hand transplantation, errors become possible. It seems then that abstention is recommended as long as we do not have all the information. However, in the field of innovating treatment, it is not possible to hope for complete enlightenment, and in a way, this is true of most of our acts and even the most validated medical procedures: ‘How many things do we do on an uncertainty!’6 The received consent, however, needs to be as informed as possible and within the limits of our present knowledge,
Please cite this article in press as: Dumont M, et al., Bilateral hand transplantation: Supporting the patient’s choice, Journal of Plastic, Reconstructive & Aesthetic Surgery (2016), http://dx.doi.org/10.1016/j.bjps.2016.11.010
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Bilateral hand transplantation and the patient needs to be fully aware that he/she is making a choice, which contains a part of wager, with the guarantee that he/she will be supported through any ordeal such as a potential failure.
Reassessing fully each party’s responsibility There indeed seems to be a risk of double misunderstanding: the patient may lean on the team, thinking that if they are offering the treatment, it must necessarily be the right one, and in return, the team may lean on the patient, thinking that his/her conviction, his/her strong desire for new hands, are tipping the scales in favour of the benefits as hands appear to be an essential improvement to his/her quality of life. It is then essential to give each of the parties their responsibility back: the team should not see a justification of the patient’s action, which must also appear profitable to them, in his/her great motivation to receive a transplant, independent of the said patient’s desire; the patient must be aware that he/she has to make a real choice, which involves risks.
The possibility of a reasonable choice The patient can then choose to request a transplantation: he/she is indeed fully able to make choices, which consider the risks and benefits despite their imprecision, while being autonomous. The patient can decide that the risks he/she takes, in terms of failure or complications, are compensated by the perspective of getting his/her hands back and enhancing his/her quality of life. It seems then that this treatment, known as being non-vital, is vital in a way for the patients as hands allow for improvement in functionality, in feeling complete, in enjoying the sense of touch and in interpersonal life. The vital, paradoxically and ceaselessly, goes beyond its most limited definition.7 Above all, of course, it is vital to stay alive, and the realities that allow this are then vital: the functioning of vital organs, air and food, clothes and housing. However, it is also vital to be able, starting from these organic requirements, to lead a life that is as fulfilling as possible; no one should be content with staying alive at the cost of what makes us really alive, of what makes life precious in our eyes, such as human relationships, our hobbies, culture, and political life. We can then understand that a patient would accept to run potentially vital risks to acquire a quality of life that will make his/her life precious in his/her eyes and intensify what makes it precious already. What is then at stake is verifying that the risks the patient is about to take are taken in the name of a better life, for him/her or in his/her relationships with others, and that this risk-taking is not unreasonable boasting or even a masked suicidal tendency or a self-inflicted punishment. Patients can feel guilty because of the burden their amputation inflicts on their surroundings. We need to ensure that the choice of risk-taking is made in the name of a broader life that is better lived and not because of simple aversion for a life one ended up despising and counting for nothing. It is only legitimate to risk one’s life because one’s life is still enjoyable.
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A possible empowerment through the procedure itself The patient can then find benefit, not counting the outcome of the surgery, in the fact that he/she attempted to do something to have a better life. The choice of transplantation gives him/her a precious power on his/her existence and enables him/her to immerse him/herself in a battle. Even in the event of a failure, he/she will still have the benefit of having tried to broaden his/her possibilities without giving in to the lessened ones that his/her disability imposes on him/her. Instead of a life solely focused on survival and prolongation, which may be essentially discouraging, he/she can reach a life that tries to improve more fully. Goldstein emphasised that a patient’s life is a life that, lessened, withdraws by avoiding disastrous situations where it could be facing an insurmountable danger.8 In the choice of transplantation, there can be a brave decision that refuses to be confined to the restrictions set by the condition of amputee and something good in the act that entails committing to a long treatment in which you take part decisively, again with the support of a team. Then the choice of a transplant can fit into a life plan in the name of a good life, which includes in the expected benefits not only the functional improvements but also the battle to get them itself.
Supporting autonomy The patients decide autonomously; it is indeed their right to decide. However, being autonomous should not mean being lonely. The decision is theirs, but they still need to be guided in their decision-making. Their autonomy must be both seen as absolute, immediately fully present in the patients, yet be supported and educated; it must grow and strengthen itself in the process of a medical decision. The patients’ autonomy is absolute, non-negotiable, but it must agree with itself and reach its full reality as much as possible; it is the fruit of a story and an education in which medical treatment can be an important milestone, a precious opportunity. For Donald Winnicott, a psychiatrist, our adult autonomy and our ability (better or worse) to be ourselves also come from an original maternal care, when we were children.9 The medical treatment brings autonomy by restoring organic functions, presupposes its existence by getting consent and makes it grow by being a moment where it reaches itself in the discussion with the team and by the benefits of the very treatment itself when successful.
The importance of showing some reluctance For the decision-making to be such a period of development of the patient’s autonomy, the team must evaluate and allow the patient to test the lasting and reasonable truly rooted nature of his/her choice. To do this, they must express a form of resistance, of reluctance to the patient’s request, so that they can judge its consistency and allow him/her to find it and strengthen it. This is about access to expressing what Frankfurt calls a ‘meta-preference’10: can
Please cite this article in press as: Dumont M, et al., Bilateral hand transplantation: Supporting the patient’s choice, Journal of Plastic, Reconstructive & Aesthetic Surgery (2016), http://dx.doi.org/10.1016/j.bjps.2016.11.010
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4 the patient express the desire of receiving a transplant not in a spontaneous but also in a reckless way and also justify this desire, defending it when facing the objections he/she will encounter? Provided that this request for justification is not made paternalistically and does not encourage the patient to conform formally, externally and maybe slavishly to the expectations he/she feels the team has, this can lead him/her to truly choose his/her choice and seize it for him/herself and for those around him/her, who should be involved in the adventure if possible. A meta-preference is a second-level intellectual act, typical of human beings according to Frankfurt, by which I choose my desire, recognise it as mine and accept it. Animals, in contrast, have of course desires but not this second-level of judgement for these desires for accepting or denying them. Indeed, we humans can desire something in the moment but not recognise ourselves in it afterwards, or even immediately, like a drug addict who desires drugs but does not like the fact that he/she desires them. In this case, his/her meta-preference (he/she wants to not want drugs) is at odds with his/her immediate preferences (he/ she still desires drugs in this moment). A reasonable choice is on the contrary a choice in which you can recognise yourself, which guarantees that choosing such an option would not eventually lead to regret. We then need to ensure that the patient not only desires to receive a transplant but also truly recognises him/herself lastingly in this desire and that he/she does not desire it recklessly or with detrimental ambitions that are still important. Again, here, the time that we take for ourselves and the resistance expressed by the team must be a way to test this coherence, maybe finding it too fragile, maybe strengthening it. Such a strengthening of the will for treatment is not only an ethical condition for undertaking it but also a condition for its success in the long term and for the acceptance of the possible failure. Indeed, in a lengthy treatment such as a transplant, with its preparation (the wait can itself be a strenuous period for patients and their families), its postoperative effects, its lengthy reeducation, and the lifelong engagement to the necessary immunosuppressive therapy, success also depends on the commitment of the patient, determined and capable of sustaining itself in time. This was demonstrated, negatively, by the very first unilateral hand transplant patient who abandoned immunosuppressive therapy a few months after his surgery, partly because of the differences between his grafted hand and his original one and partly because of his dissatisfaction with the outcomes. To be able to justify his/her desire of a transplant, the patient will then need to be able to show that he/she includes in his/her decision an understanding of the expected limits of the results: that the possible failure, in the more or less long run, was considered; that the long-term medical relationship to which he/she commits is really understood as a necessity for him/her, which will allow for a mutual trusting relationship between the patient and the team; and that the importance of the support of those around him/her, relatives and institutions, as well as the fact that he/she will have to carry part of the commitment the treatment represents, are well kept in mind. These conditions for a reasonable choice on the patient’s part, while putting aside the temptation of adventurous heroism
M. Dumont et al. that would feign to deny extremely real obstacles, allow the medical team to ensure that it is also reasonable to grant him/her his/her request of a transplantation. This allows the team to form its own consent to the procedure, which is as necessary as the patient’s.
Ethical criteria on the medical team’s part The patient autonomously chooses to ask for a transplantation; however, if he/she’s asking for it, it is also because a team is suggesting it and is making this option available as a therapeutic possibility in a particular case. There is then a responsibility on the team’s part: the patient is the one who decides, however, on a therapy that the team recognises as being reasonable. This imposes a series of essential ethical commitments on the team itself. First, the medical team owes the patient a constant reassessment of the results of previously realised transplantations, the implemented procedures, and the favourable indications, as is the case in any innovative treatment and even in the most validated ones. The medical team must express criteria for the patients’ inclusion or exclusion (state of the stumps and general condition of the patient, psychological aspects and the quality of the patient’s surroundings) that are fair, clear, and expressed early for the team as well as to the patient from the first meeting, even if there is some room for a gradual reorientation of the indications in this innovative treatment. The patient must be offered the opportunity of meeting and/or discussing with previous grafted patients. The team must then guarantee to provide a treatment of the highest quality through the scrupulous preparation of the surgery and of its participants in all their variety: surgeons, nurses, immunologists, psychiatrists and psychologists, and physiotherapists. It must promise to provide the patient with the best graft possible, while respecting the donor’s dignity, for him/her and his/her family. Lastly, it must commit to an unfailing support for as long as possible, guaranteeing the patient that he/she would not be left on his/her own in any way facing the difficulties encountered and the possible failure. Here, as Hans Jonas emphasises,11 responsibility is conceived not only as an ability to accept the past that occurred but as anticipating the future and doing everything to avoid the complications that could occur while promising to treat them. There are many other issues raised by bilateral hand transplantation, such as the integration of the graft,12 its steps, and its support during physiotherapy, or such as the fine assessment of its indications, which involves the most scrupulous analyses of what we are trying to treat with this procedure and how much importance we should give to the different benefits it brings (feeling of normalcy, social inclusion, interpersonal life and functionality) while comparing the benefits of the transplant to other treatments, which may be less efficient but also less risky. Bilateral transplantation is also an issue for our healthcare systems because of the question of its financial pertinence.13 The patient’s decision process, the support he/she receives from his medical team and the ethical obligations that fall upon that team are of prime importance in any case to ensure that the treatment is performed in the
Please cite this article in press as: Dumont M, et al., Bilateral hand transplantation: Supporting the patient’s choice, Journal of Plastic, Reconstructive & Aesthetic Surgery (2016), http://dx.doi.org/10.1016/j.bjps.2016.11.010
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Bilateral hand transplantation patient’s best interest; the careful consideration of these elements is entirely medical. It is fully part of the treatment and can be an opportunity for the patient’s moral autonomy to grow in his/her search for greater functional and social autonomy and for a life open to new possibilities.
Conflicts of interests The authors declare they have no conflicts of interests.
Acknowledgements The authors thank Magali Smith for translating the manuscript to English language.
References 1. Petruzzo P, Gazarian A, Kanitakis J, et al. Outcomes after bilateral hand allotransplantation: a risk/benefit ratio analysis. Ann Surg 2015;261(1):213e20. 2. Kahnemann D, Tversky A. Choices values and frames. Am Psychol 1984;39:341e50.
5 3. Kanitakis J, Petruzzo P, Badet L, et al. Chronic rejection in human vascularized composite allotransplantation (hand and face recipients): an update. Transplantation 2016 May 10 [Epub ahead of print]. 4. Descartes Rene ´. Meditations on first philosophy IV. Paris: Vrin: Oeuvres comple `tes, Adam et Tannery; 1996 [1641], IX 46. 5. Descartes Rene ´. Lettre au pe`re Mesland, 9 fe´vrier 1645. Paris: Vrin: Oeuvres comple `tes, Adam et Tannery; 1996. IV 169. 6. Pascal Blaise. Pense´es. 234. New York: E. P. Dutton; 1958. 7. Worms Fre ´de ´ric. Qu’est-ce qui est vital ? Bull la socie´te´ fran¸caise Philos 2007;101/2:1e28. 8. Goldstein Kurt. The organism. Zone books. 1995 [1934]. 9. Winnicott Donald. Playing and reality. New York: Basic Books; 1971. 10. Frankfurt Harry G. Freedom of the will and the concept of a person. J Philos 1971;68:5e20. 11. Jonas Hans. The imperative of responsibility, Chicago. University of Chicago Press; 1985. p. 81e92 [1979], 4 ii, “Theory of Responsibility: First Distinctions”. 12. Zeiler Kristin. Ethics and organ transfer: a Merleau-Pontean perspective. Health Care Anal 2009;17:110e22. 13. Chung Kevin C, Takashi Oda, Daniel Saddawi-Konefka, Shauver Melissa J. An economic analysis of hand transplantation in the United States. Plastic Reconstr Surg 2010; 125(2):589e98.
Please cite this article in press as: Dumont M, et al., Bilateral hand transplantation: Supporting the patient’s choice, Journal of Plastic, Reconstructive & Aesthetic Surgery (2016), http://dx.doi.org/10.1016/j.bjps.2016.11.010
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Journal of Plastic, Reconstructive & Aesthetic Surgery (2016) xx, 1e5
Bilateral hand transplantation: Supporting the patient’s choice* M. Dumont*,a, L. Sann b, A. Gazarian c Ecole normale supe´rieure, ED 540, 45 rue d’Ulm, 750005 Paris, France Received 25 June 2016; accepted 18 November 2016
KEYWORDS Ethics; Hand transplantation; Autonomy; Informed consent; Decision-making
Summary Bilateral hand transplantation, as a fairly new reconstructive option for amputees, raises major ethical questions. This article, which is based on the reflections arising from the rich experience of Lyon’s team in this field, addresses the topic of supporting the patient in his choice for or against this procedure. How should autonomy be understood in this particular setting? The developing field of composite tissue allotransplantation needs to establish a common thinking on this subject. The article emphasises that, even if it is their right to decide, patients have to be carefully supported to help them make the most consolidated choice possible in this challenging procedure. We deal with the question of the choice between the uncertainty in this innovative procedure and a life-threatening treatment to alleviate a handicap. We outline that the entire process of hand allograft is a unique opportunity for the patients to strengthen and exercise their autonomy in interaction with the medical team. ª 2016 British Association of Plastic, Reconstructive and Aesthetic Surgeons. Published by Elsevier Ltd. All rights reserved.
* This work has been presented in a former version at the December 19the21st 2013 Convention of the Socie ¸aise de ´te ´ franc Chirurgie de la Main (Z French Society for the Surgery of Hand). * Corresponding author. 96 rue Jean Sans Peur, 59800 Lille, France. E-mail address: [email protected] (M. Dumont). a ´cole normale supe Philosophy, ED 540 (E ´rieure, Paris, France). b Paediatrician, president of the Ethics Board of the FemmeMe `re-Enfant Hospital in Lyon-Bron, France. c Orthopaedic Surgery Department, Clinique du Parc Lyon, Lyon, France.
Bilateral hand transplantation is a fairly new reconstructive option for bilateral upper limb amputees. Since the first (unilateral) successful surgery in 1998, it has raised, and still raises, ethical questions. The two main questions are as follows: hand transplantation is almost unique in the world of transplant surgery, in that it offers a significantly disabled patient a treatment, a chance of significantly improved function, but in return for a significant likelihood of shortening his/her life expectancy. The transplanted hands, the acquisition of which is a long process, are liable to be rejected in the long
http://dx.doi.org/10.1016/j.bjps.2016.11.010 1748-6815/ª 2016 British Association of Plastic, Reconstructive and Aesthetic Surgeons. Published by Elsevier Ltd. All rights reserved.
Please cite this article in press as: Dumont M, et al., Bilateral hand transplantation: Supporting the patient’s choice, Journal of Plastic, Reconstructive & Aesthetic Surgery (2016), http://dx.doi.org/10.1016/j.bjps.2016.11.010
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2 run, leading to a new amputation and possibly a new transplantation. These two ethical questions are fairly new in transplantation because the longest survival possible is usually a benefit for the patient, as is a better quality of life, and because the rejection of the transplant, ultimately in a non-vital setting, poses other problems than in the case of a vital organ. The non-vital nature of this treatment thus bypasses some complications that are encountered in other transplants: the direct or indirect side effects, lifelong immunosuppressive therapy essential to the survival of the grafts, and chronic rejection in the long run. How can we then establish the reasonable nature of such a treatment? What are the ethical criteria that need to be considered before committing to it? To understand the reasonable and legitimate nature of hand transplantation, we need several elements: a calculation of the risks and benefits for the patient in as much detail as possible, which entails a fine understanding of the bilateral amputee’s life and of his/her transplant request; we also need to ensure that the patient’s decision is strengthened and realistic; and finally, such a decision is not without requirements from the medical team itself. This would not be about studying the issue of the risks and benefits, which has already been studied elsewhere,1 but rather about studying the criteria of a reasonable choice on the patient’s part and the constraints that fall to the team for this, both in terms of supporting his/her decision and of ethical commitment in the treatment. How can we support patients in their choice of hand allotransplant?
Criteria of reasonable risk-taking by the patient supported by the team The absence of urgency to decide When facing the important risks and constraints involved in bilateral hand transplant, the patient’s resolve is essential. It is then essential that the medical team test the realistic nature of the transplant candidate’s expectations and help him/her get such realistic expectations. It is known that trauma victims who lose some part of their body and some related functioning react by taking risks because of loss aversion. Therefore, in this respect, they may underestimate the risks.2 They can also face the treatment in a spirit of misplaced revenge towards a fate that was unfair to them when depriving them of their hands. The functional, psychological, and existential repercussions of the amputation are deep and require guidance first before any suggestion of a transplant possibility. It is then essential that some time be given to the patients, time to make an effort to adapt to the trauma that they went through, get the treatments available aside from a transplant (namely prosthesis) and embrace their new condition as well as possible and its limits and possibilities. Faced with the risks incurred as part of the transplantation, it seems in fact that being able to manage without hands would be preferable. It is nevertheless possible that a transplantation be requested afterwards, a request that will have to be both examined and guided.
M. Dumont et al.
A choice under uncertainty Patients who ask for a bilateral hand transplant must give their informed consent. It is then essential that predictable risks and benefits are presented to them honestly while ensuring that they understand the different aspects of the treatment, particularly the possibility in the long run of chronical rejection of hands that would be theirs only for a while. The difficulty here is that the risks and benefits are tinged with uncertainty, as is the case with essentially every treatment, but most significantly with an innovative treatment such as hand transplantation. Even if the immediate risks are quantifiable, risks of the surgery itself, risks of the long-term effects of the immunosuppressive therapy, and the chronical rejection risk is still difficult to assess; it is nonetheless a possibility and has already once led to the removal of the allograft.3 The benefits, even if the results are likely to be reproducible, have a greater uncertainty because of the small number of patients treated as of now. It is then about considering even the possibility of a comparatively weak advantage to assess the reasonable nature of the initiative. Thus, we find ourselves in a situation where a fully informed consent seems impossible to attain. Indeed, enlightening a situation perfectly would come down to reducing the part of choice it involves to nothing: if we were capable of enlightening the different options of a choice and their respective consequences perfectly, the choice to be made would clearly appear on its own and be obvious: ‘if I always saw clearly what was true and good, I should never have to deliberate about the right judgement or choice’,4 said Descartes. Then we would not have to decide but actually only consent to what would be, from this point forward, as obvious evidence. It is nonetheless possible to refuse even an obviously better choice, and we still have to validate it. In such a case, we still need the essential step of consenting to this option, particularly in a medical context where this is done on ourselves for our own benefit but by someone else. Descartes emphasised this essential role of one’s will to accept to give momentum to the option that clearly appears as being the best: ‘when an obvious reason pushes us to one side, morally speaking, we can hardly choose the opposite side, however in absolute terms, we can. Indeed, it is always possible to stop ourselves from going after a clearly known good or to admit an evident truth, provided we think it is something good to assert our free will in this way’.5 However, in a situation where there is still uncertainty, as is the case with any medical initiative and even more so with innovative surgeries such as hand transplantation, errors become possible. It seems then that abstention is recommended as long as we do not have all the information. However, in the field of innovating treatment, it is not possible to hope for complete enlightenment, and in a way, this is true of most of our acts and even the most validated medical procedures: ‘How many things do we do on an uncertainty!’6 The received consent, however, needs to be as informed as possible and within the limits of our present knowledge,
Please cite this article in press as: Dumont M, et al., Bilateral hand transplantation: Supporting the patient’s choice, Journal of Plastic, Reconstructive & Aesthetic Surgery (2016), http://dx.doi.org/10.1016/j.bjps.2016.11.010
+
MODEL
Bilateral hand transplantation and the patient needs to be fully aware that he/she is making a choice, which contains a part of wager, with the guarantee that he/she will be supported through any ordeal such as a potential failure.
Reassessing fully each party’s responsibility There indeed seems to be a risk of double misunderstanding: the patient may lean on the team, thinking that if they are offering the treatment, it must necessarily be the right one, and in return, the team may lean on the patient, thinking that his/her conviction, his/her strong desire for new hands, are tipping the scales in favour of the benefits as hands appear to be an essential improvement to his/her quality of life. It is then essential to give each of the parties their responsibility back: the team should not see a justification of the patient’s action, which must also appear profitable to them, in his/her great motivation to receive a transplant, independent of the said patient’s desire; the patient must be aware that he/she has to make a real choice, which involves risks.
The possibility of a reasonable choice The patient can then choose to request a transplantation: he/she is indeed fully able to make choices, which consider the risks and benefits despite their imprecision, while being autonomous. The patient can decide that the risks he/she takes, in terms of failure or complications, are compensated by the perspective of getting his/her hands back and enhancing his/her quality of life. It seems then that this treatment, known as being non-vital, is vital in a way for the patients as hands allow for improvement in functionality, in feeling complete, in enjoying the sense of touch and in interpersonal life. The vital, paradoxically and ceaselessly, goes beyond its most limited definition.7 Above all, of course, it is vital to stay alive, and the realities that allow this are then vital: the functioning of vital organs, air and food, clothes and housing. However, it is also vital to be able, starting from these organic requirements, to lead a life that is as fulfilling as possible; no one should be content with staying alive at the cost of what makes us really alive, of what makes life precious in our eyes, such as human relationships, our hobbies, culture, and political life. We can then understand that a patient would accept to run potentially vital risks to acquire a quality of life that will make his/her life precious in his/her eyes and intensify what makes it precious already. What is then at stake is verifying that the risks the patient is about to take are taken in the name of a better life, for him/her or in his/her relationships with others, and that this risk-taking is not unreasonable boasting or even a masked suicidal tendency or a self-inflicted punishment. Patients can feel guilty because of the burden their amputation inflicts on their surroundings. We need to ensure that the choice of risk-taking is made in the name of a broader life that is better lived and not because of simple aversion for a life one ended up despising and counting for nothing. It is only legitimate to risk one’s life because one’s life is still enjoyable.
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A possible empowerment through the procedure itself The patient can then find benefit, not counting the outcome of the surgery, in the fact that he/she attempted to do something to have a better life. The choice of transplantation gives him/her a precious power on his/her existence and enables him/her to immerse him/herself in a battle. Even in the event of a failure, he/she will still have the benefit of having tried to broaden his/her possibilities without giving in to the lessened ones that his/her disability imposes on him/her. Instead of a life solely focused on survival and prolongation, which may be essentially discouraging, he/she can reach a life that tries to improve more fully. Goldstein emphasised that a patient’s life is a life that, lessened, withdraws by avoiding disastrous situations where it could be facing an insurmountable danger.8 In the choice of transplantation, there can be a brave decision that refuses to be confined to the restrictions set by the condition of amputee and something good in the act that entails committing to a long treatment in which you take part decisively, again with the support of a team. Then the choice of a transplant can fit into a life plan in the name of a good life, which includes in the expected benefits not only the functional improvements but also the battle to get them itself.
Supporting autonomy The patients decide autonomously; it is indeed their right to decide. However, being autonomous should not mean being lonely. The decision is theirs, but they still need to be guided in their decision-making. Their autonomy must be both seen as absolute, immediately fully present in the patients, yet be supported and educated; it must grow and strengthen itself in the process of a medical decision. The patients’ autonomy is absolute, non-negotiable, but it must agree with itself and reach its full reality as much as possible; it is the fruit of a story and an education in which medical treatment can be an important milestone, a precious opportunity. For Donald Winnicott, a psychiatrist, our adult autonomy and our ability (better or worse) to be ourselves also come from an original maternal care, when we were children.9 The medical treatment brings autonomy by restoring organic functions, presupposes its existence by getting consent and makes it grow by being a moment where it reaches itself in the discussion with the team and by the benefits of the very treatment itself when successful.
The importance of showing some reluctance For the decision-making to be such a period of development of the patient’s autonomy, the team must evaluate and allow the patient to test the lasting and reasonable truly rooted nature of his/her choice. To do this, they must express a form of resistance, of reluctance to the patient’s request, so that they can judge its consistency and allow him/her to find it and strengthen it. This is about access to expressing what Frankfurt calls a ‘meta-preference’10: can
Please cite this article in press as: Dumont M, et al., Bilateral hand transplantation: Supporting the patient’s choice, Journal of Plastic, Reconstructive & Aesthetic Surgery (2016), http://dx.doi.org/10.1016/j.bjps.2016.11.010
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4 the patient express the desire of receiving a transplant not in a spontaneous but also in a reckless way and also justify this desire, defending it when facing the objections he/she will encounter? Provided that this request for justification is not made paternalistically and does not encourage the patient to conform formally, externally and maybe slavishly to the expectations he/she feels the team has, this can lead him/her to truly choose his/her choice and seize it for him/herself and for those around him/her, who should be involved in the adventure if possible. A meta-preference is a second-level intellectual act, typical of human beings according to Frankfurt, by which I choose my desire, recognise it as mine and accept it. Animals, in contrast, have of course desires but not this second-level of judgement for these desires for accepting or denying them. Indeed, we humans can desire something in the moment but not recognise ourselves in it afterwards, or even immediately, like a drug addict who desires drugs but does not like the fact that he/she desires them. In this case, his/her meta-preference (he/she wants to not want drugs) is at odds with his/her immediate preferences (he/ she still desires drugs in this moment). A reasonable choice is on the contrary a choice in which you can recognise yourself, which guarantees that choosing such an option would not eventually lead to regret. We then need to ensure that the patient not only desires to receive a transplant but also truly recognises him/herself lastingly in this desire and that he/she does not desire it recklessly or with detrimental ambitions that are still important. Again, here, the time that we take for ourselves and the resistance expressed by the team must be a way to test this coherence, maybe finding it too fragile, maybe strengthening it. Such a strengthening of the will for treatment is not only an ethical condition for undertaking it but also a condition for its success in the long term and for the acceptance of the possible failure. Indeed, in a lengthy treatment such as a transplant, with its preparation (the wait can itself be a strenuous period for patients and their families), its postoperative effects, its lengthy reeducation, and the lifelong engagement to the necessary immunosuppressive therapy, success also depends on the commitment of the patient, determined and capable of sustaining itself in time. This was demonstrated, negatively, by the very first unilateral hand transplant patient who abandoned immunosuppressive therapy a few months after his surgery, partly because of the differences between his grafted hand and his original one and partly because of his dissatisfaction with the outcomes. To be able to justify his/her desire of a transplant, the patient will then need to be able to show that he/she includes in his/her decision an understanding of the expected limits of the results: that the possible failure, in the more or less long run, was considered; that the long-term medical relationship to which he/she commits is really understood as a necessity for him/her, which will allow for a mutual trusting relationship between the patient and the team; and that the importance of the support of those around him/her, relatives and institutions, as well as the fact that he/she will have to carry part of the commitment the treatment represents, are well kept in mind. These conditions for a reasonable choice on the patient’s part, while putting aside the temptation of adventurous heroism
M. Dumont et al. that would feign to deny extremely real obstacles, allow the medical team to ensure that it is also reasonable to grant him/her his/her request of a transplantation. This allows the team to form its own consent to the procedure, which is as necessary as the patient’s.
Ethical criteria on the medical team’s part The patient autonomously chooses to ask for a transplantation; however, if he/she’s asking for it, it is also because a team is suggesting it and is making this option available as a therapeutic possibility in a particular case. There is then a responsibility on the team’s part: the patient is the one who decides, however, on a therapy that the team recognises as being reasonable. This imposes a series of essential ethical commitments on the team itself. First, the medical team owes the patient a constant reassessment of the results of previously realised transplantations, the implemented procedures, and the favourable indications, as is the case in any innovative treatment and even in the most validated ones. The medical team must express criteria for the patients’ inclusion or exclusion (state of the stumps and general condition of the patient, psychological aspects and the quality of the patient’s surroundings) that are fair, clear, and expressed early for the team as well as to the patient from the first meeting, even if there is some room for a gradual reorientation of the indications in this innovative treatment. The patient must be offered the opportunity of meeting and/or discussing with previous grafted patients. The team must then guarantee to provide a treatment of the highest quality through the scrupulous preparation of the surgery and of its participants in all their variety: surgeons, nurses, immunologists, psychiatrists and psychologists, and physiotherapists. It must promise to provide the patient with the best graft possible, while respecting the donor’s dignity, for him/her and his/her family. Lastly, it must commit to an unfailing support for as long as possible, guaranteeing the patient that he/she would not be left on his/her own in any way facing the difficulties encountered and the possible failure. Here, as Hans Jonas emphasises,11 responsibility is conceived not only as an ability to accept the past that occurred but as anticipating the future and doing everything to avoid the complications that could occur while promising to treat them. There are many other issues raised by bilateral hand transplantation, such as the integration of the graft,12 its steps, and its support during physiotherapy, or such as the fine assessment of its indications, which involves the most scrupulous analyses of what we are trying to treat with this procedure and how much importance we should give to the different benefits it brings (feeling of normalcy, social inclusion, interpersonal life and functionality) while comparing the benefits of the transplant to other treatments, which may be less efficient but also less risky. Bilateral transplantation is also an issue for our healthcare systems because of the question of its financial pertinence.13 The patient’s decision process, the support he/she receives from his medical team and the ethical obligations that fall upon that team are of prime importance in any case to ensure that the treatment is performed in the
Please cite this article in press as: Dumont M, et al., Bilateral hand transplantation: Supporting the patient’s choice, Journal of Plastic, Reconstructive & Aesthetic Surgery (2016), http://dx.doi.org/10.1016/j.bjps.2016.11.010
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Bilateral hand transplantation patient’s best interest; the careful consideration of these elements is entirely medical. It is fully part of the treatment and can be an opportunity for the patient’s moral autonomy to grow in his/her search for greater functional and social autonomy and for a life open to new possibilities.
Conflicts of interests The authors declare they have no conflicts of interests.
Acknowledgements The authors thank Magali Smith for translating the manuscript to English language.
References 1. Petruzzo P, Gazarian A, Kanitakis J, et al. Outcomes after bilateral hand allotransplantation: a risk/benefit ratio analysis. Ann Surg 2015;261(1):213e20. 2. Kahnemann D, Tversky A. Choices values and frames. Am Psychol 1984;39:341e50.
5 3. Kanitakis J, Petruzzo P, Badet L, et al. Chronic rejection in human vascularized composite allotransplantation (hand and face recipients): an update. Transplantation 2016 May 10 [Epub ahead of print]. 4. Descartes Rene ´. Meditations on first philosophy IV. Paris: Vrin: Oeuvres comple `tes, Adam et Tannery; 1996 [1641], IX 46. 5. Descartes Rene ´. Lettre au pe`re Mesland, 9 fe´vrier 1645. Paris: Vrin: Oeuvres comple `tes, Adam et Tannery; 1996. IV 169. 6. Pascal Blaise. Pense´es. 234. New York: E. P. Dutton; 1958. 7. Worms Fre ´de ´ric. Qu’est-ce qui est vital ? Bull la socie´te´ fran¸caise Philos 2007;101/2:1e28. 8. Goldstein Kurt. The organism. Zone books. 1995 [1934]. 9. Winnicott Donald. Playing and reality. New York: Basic Books; 1971. 10. Frankfurt Harry G. Freedom of the will and the concept of a person. J Philos 1971;68:5e20. 11. Jonas Hans. The imperative of responsibility, Chicago. University of Chicago Press; 1985. p. 81e92 [1979], 4 ii, “Theory of Responsibility: First Distinctions”. 12. Zeiler Kristin. Ethics and organ transfer: a Merleau-Pontean perspective. Health Care Anal 2009;17:110e22. 13. Chung Kevin C, Takashi Oda, Daniel Saddawi-Konefka, Shauver Melissa J. An economic analysis of hand transplantation in the United States. Plastic Reconstr Surg 2010; 125(2):589e98.
Please cite this article in press as: Dumont M, et al., Bilateral hand transplantation: Supporting the patient’s choice, Journal of Plastic, Reconstructive & Aesthetic Surgery (2016), http://dx.doi.org/10.1016/j.bjps.2016.11.010