Evans, Linda A.
Facial transplantation is an innovative surgical procedure that has received significant focus and critique in the scientific literature as well as the media. Ethical issues were extensively discussed during the conceptual phase of the procedure. Healthcare providers involved in this type of innovative procedure may interpret it as laden with ethical complexities because the procedure itself, and subsequent treatment, so profoundly relate to issues of personal identity, quality of life, and utilization of resources. Furthermore, uncertainty regarding patient outcomes after technologically advanced interventions has been associated with an intensification of ethical and moral dilemmas for caregivers in acute care settings (Schluter, Winch, Holzhauser, & Henderson, 2008). This study examined the experiences of the healthcare team members in caring for patients undergoing facial transplant surgery.
In the past 8 years, approximately 25 facial transplantation surgeries have been undertaken worldwide (Murphy, Zuker, & Borschel, 2013). Facial transplantation is a surgical option when soft tissue and bone loss is accompanied by severe cosmetic, sensory, and functional deficiencies because of disease (Hui-Chou, Nam, & Rodriguez, 2010), trauma (Devauchelle et al., 2006; Pomahac et al., 2011; Ravindra, Wu, McKinney, Xu, & Ildstad, 2009; Siemionow et al., 2009), or congenital malformations (Barker et al., 2007). The extent and types of tissue transplanted, which may consist of bone, muscle, and soft tissue, are unique to each patient’s cosmetic and functional deficits. Hence, the surgical procedure and postoperative course are highly variable.
The surgical scope and time needed for the donor procedure are variable because procuring the graft from the donor is highly dependent on the needs of the recipient. Care of the donor and their family presents unique challenges. The unusual request for a facial tissue donation may create an intensely emotional conundrum for their family. Funeral rituals may have to be altered because of the graft donation, after which the donor’s face may be replaced with a prosthetic mask.
Facial transplant is only considered when conventional reconstructive methods have resulted in inadequate results (Barker et al., 2007; Morris et al., 2007). The availability of technically advanced, often experimental and innovative procedures presents options to patients not previously thought possible. Acute patient care issues as well as long-term patient outcomes to newly introduced techniques and procedures are often speculative, and the impact of involvement on the healthcare team members is unknown. Such is the case with facial transplantation surgery.
Introduction of facial tissue transplantation surgery engendered complex clinical, technological, and ethical patient care issues (Barker et al., 2007; Chenggang et al., 2008; Devauchelle et al., 2006; Evans, 2011; Morris et al., 2004, 2007). The complex issues include determining patient selection criteria (Butler, Clarke, & Hettiaratchy, 2005; Pushpakumar et al., 2010), refining donor tissue procurement techniques (Meninguad, Paraskevas, Ingallina, Bouhana, & Lantieri, 2008; Pushpakumar et al., 2010), predicting expected functional outcomes (Landin, Cavadas, Gonzalez, Rodriguez, & Caballero, 2008; Pushpakumar et al., 2010), appreciating the limitations of obtaining a fully informed consent for an innovative procedure (Hurlburt, 2007; King, 2002; Reitsma & Moreno, 2006; Renshaw, Clarke, Diver, Ashcroft, & Butler, 2006), and deliberating the immunological response and postoperative immunosuppressant requirements of the recipient (Petit, Paraskevas, Minnus, Lee, & Lantieri, 2004; Pomahac, Aflaki, Chandraker, & Pribaz, 2008; Swearingen et al., 2008; Wu, Xu, Ravindra, & Ildstad, 2009). In addition, psychological implications for the patient (Clarke & Butler, 2009; Morris et al., 2007; Swindell, 2006), societal consequences (Furr et al., 2007; Kalliainen, 2010), and ethical concerns (Hurlburt, 2007; O’Neill & Godden, 2009; Renshaw et al., 2006) were identified.
Case details were reported by individual surgical teams that performed facial transplantation procedures (Devauchelle et al., 2006; Hui-Chou et al., 2010; Pomahac et al., 2011; Siemionow & Gordon, 2010a), and recommendations for others planning to undertake the procedure in the future have been outlined (Siemionow & Gordon, 2010a). The recommendations included discussion of issues involved in obtaining institutional review board (IRB) consent for the procedure as a research-based initiative (Pomahac et al., 2008; Siemionow & Gordon, 2010b), simulated surgical procedures to refine the surgical plan (Pomahac et al., 2008; Siemionow & Gordon, 2010a), and determination of patient selection criteria (Pomahac et al., 2008; Siemionow & Gordon, 2010a). Members of the extensive multidisciplinary team involved in the screening and management of patients planning to undergo facial transplantation surgery have been categorically identified and include technically skillful micro and reconstructive surgeons and physicians specializing in transplantation, immunologists, otolaryngologists, infectious disease, and psychiatry; a full complement of professionals specializing in rehabilitation of the patient, including speech, occupational, and physical therapists; social workers, and chaplains to provide emotional and spiritual care; nurses to provide holistic care of the patient and family during all phases of the procedure; an ethicist; and because of the high public visibility of the procedure, the public relations and security departments (Siemionow & Gordon, 2010a).
Team Member Attitudes and Experiences
Thus far, four empirical studies have been published reporting attitudes and opinions toward facial transplantation. Notably, each study was carried out before the first facial transplantation procedure. Therefore, the data were not based on direct experiences of the participants caring for facial transplantation patients.
A mixed methods study was conducted to evaluate attitudes of transplant professionals toward facial transplantation in the United Kingdom (Clarke et al., 2007). Three main issues related to organ retrieval, team concerns, and donor families. Nurses, operating room staff, and transplant coordinators (N = 170) who responded to the questionnaire after hearing a lecture given by a surgeon leading the development of a facial transplant program in the United Kingdom viewed the procedure positively, with 76% of participants supporting facial transplantation procedures; 23% felt more research was needed before its initiation. No participants disagreed in principle with the procedure. There was a significant association (χ2 = 8.28, p = .016) between knowing someone with a disfiguring condition and being in favor of facial transplantation. In addition, respondents recommended that more attention be paid to the “needs of the donor family, support for the team, and the development of clear management pathways.” The recommendation of “support for the team” is noteworthy in motivating the current study.
The second study assessed the degree of risk that would be tolerated when considering whether to proceed with facial transplant surgery (Vasilic et al., 2008). Five groups of individuals (N = 305) took part: persons who were facially disfigured (n = 33), reconstructive surgeons (n = 45), recipients of other organ transplants (n = 42), professionals who manage immunosuppressive therapy for transplant recipients (n = 37), and a healthy group (n = 148). The Louisville Instrument for Transplantation survey was used to objectively measure transplantation risk acceptance. The five groups differed significantly in the amount of risk they would accept; reconstructive surgeons were most risk averse, and healthy respondents were willing to accept the most risk, suggesting that experience was associated with risk acceptance.
A Web-based survey of 164 burn and plastic surgeons assessed presumed risk-to-benefit ratio and the evaluation of clinical indications for facial transplant (Mathes, Kumar, & Ploplys, 2009). The strongest support for facial transplantation was found with the scenarios detailing multiple failed reconstructions and when the patient had sustained total facial burns. In the final study, attitudes of a small sample of the general public (n = 8) and medical professionals (n = 8) toward face transplantation were obtained using in-depth, semistructured interviews (Prior & Klein, 2011). Five themes emerged: (a) agreement in principle, with consensus that the procedure would enhance the quality of life in severely disfigured individuals; (b) caveats and conditions that included appropriateness of patient selection; (c) recognition of medical and technical difficulties involved in comprehensive, ongoing, physical and psychological therapy; (d) consideration of the function and appearance of the face as unique and special; and (e) the emotional significance of the human face. Technical feasibility of the procedure, quality of life for the recipient, and ability to cope with changed appearance were concerns expressed in both groups. The general public and medical professional groups differed in the following areas: quality of the recipient’s appearance, possibility and likelihood of ethical abuse, and medical and technical difficulties of the procedure. The medical professional group had greater concern for the technical problems of the possibility for graft failure and the possible consequences of long-term immunosuppressant therapy. A limitation of the study, identified by the authors, was that the participants had no first-hand knowledge of facial transplantation. This limitation was addressed by the current study.
At the time of this writing, no published studies describing the personal, professional, and ethical experiences of the healthcare team members who have participated in facial transplant procedures, whose attitudes and experiences may consequently impact patient care, were located. The purpose of this study was, therefore, to explore healthcare team member experiences of caring for facial transplantation patients, using an ethical framework.
A qualitative descriptive design was utilized to explore the experiences of members of the healthcare team who have participated in facial transplantation procedures and patient care. This type of qualitative approach is useful when a comprehensive summary of an experience is desired, promoting rich description of real-life events without extensive theoretical or interpretive deduction and as a pathway to further study (Sandelowski, 2000). As the topic had not yet been explored, a research method, which allowed for a broad yet situation-specific understanding of phenomena, was appropriate. Attention to the component of trustworthiness (as defined by Lincoln & Guba, 1985) was integrated throughout the design, data collection, and analysis phases of this study.
Multidisciplinary team members, including professional, ancillary, and support staff, were invited to participate in individual interview sessions to elicit their personal and professional or occupation-related experiences with facial transplantation. Individual interviews were carried out to provide an opportunity for focused personal reflection of this novel experience. The qualitative descriptive design allowed for an iterative process of modification of the interview questions as themes emerged during data collection and analysis.
Moore’s (1970, 1988, 1989, 2000) ethical criteria for surgical innovation guided this study and were used to frame the interview questions and data analysis. Understanding the healthcare team member’s experience of involvement in facial transplantation might identify patient-related topics in need of further exploration, expand a narrow evidence base, and suggest interventions to assure optimal patient outcomes while exploring real or potential ethical dilemmas. Therefore, a framework that provides criteria for the evaluation of the ethical acceptability of facial transplant surgery was justified. The framework provides for conceptual evaluation of the scientific background of the innovation, the skill set and field strength of the team, the ethical climate of the institution, and the extent to which the innovation has been subject to professional and public scrutiny. It serves to guide innovation by calling for a thorough evaluation of the science supporting the surgical procedure, while evaluating the skills of not only the surgical team but also all the multidisciplinary professionals who are necessary and committed to the undertaking. Moore warned that the intentions of the team and institution must be grounded in basic ethical principles and that a fundamental uneasiness about undertaking the effort must exist.
Healthcare team members were recruited using pragmatic case sampling (Friedrichs & Katochwil, 2009) at a large academic teaching institution that had performed four facial transplant procedures. IRB approval was obtained before sample recruitment and commencing data collection.
Potential participants were identified by reviewing patient medical records of one donor and four recipients along with a snowball sampling technique (Polit & Beck, 2004, p. 306). Participants included professional, ancillary, and support staff. Response redundancy was evident early in the data collection process; however, sampling continued in an effort to include a representative of each role category of healthcare team member involved in facial transplantation patient care. Potential participants were contacted in person, by telephone, or through email. A letter of explanation regarding the purpose of the study, its voluntary nature, and assuring confidentiality was distributed during the recruitment process. Verbal informed consent agreement was obtained from each participant at the time of the data collection interview.
A demographic data sheet was collected from each participant. Individual, private, semistructured face-to-face interviews were conducted with 24 participants; two additional participant interviews were conducted via telephone. The author conducted all interviews. At the time the research was carried out, she was an employee of the institution where the data collection occurred, a colleague of some of the research participants, and she had participated in the intraoperative care of one patient. In addition to the core interview questions, probes were used to stimulate dialogue and promote understanding of the questions as needed, and additional interview questions and probes were added in an iterative process. Interviews lasted from 22 to 77 minutes, with a mean of 42 minutes. Transcribed interview dialogue yielded 779 double-spaced pages of data.
Interviews were digitally recorded using two recorders to assure recording quality. Immediately after each interview, the audio recording was listened to in its entirety, and additional field notes were taken to supplement those completed during the original interview. In-depth notes were recorded during the interviews conducted by telephone as well as during the one face-to-face interview that was not recorded per the participant’s request. The audio recording of each interview was downloaded to a password-protected computer, and a copy was created for the transcriptionist. Audio recordings were listened to a second time and cross-referenced with the transcriptionist’s rendering. Transcribed interviews were then uploaded to NVivo software for coding and analysis. The notes from the two interviews conducted by telephone and the interview that was not recorded were also uploaded to NVivo and, when coded, contained a notation that the comment was paraphrased by the researcher.
Trustworthiness of the research methods was paramount throughout the design, methodology, and analysis of data. Field notes were recorded during and after each interview by the researcher. Member checks (Lincoln & Guba, 1985) were utilized during the interview process to assure understanding of the data being presented and assure descriptive validity (Sandelowski, 2000). A PhD-prepared mentor with an established program of research served as a peer mentor for debriefing and transparency.
Conventional qualitative content analysis (Hsieh & Shannon, 2005) was carried out throughout the interview and data analysis phases after the process suggested by Miles and Huberman (1994). Analysis occurred at individual, intradisciplinary, and interdisciplinary levels to identify themes within the individual experience as well as between participants to contextually describe the whole of the phenomenon (Ayers, Kavanaugh, & Knafl, 2003). Use of NVivo software (Bazeley, 2007) aided in the conceptual organization of the data. Themes constructed during data analysis sought to underscore the data using descriptive terminology.
Fifty-two healthcare team members were contacted and invited to participate. Twenty-six individuals (50%) responded, consented to participate, and were interviewed. Characteristics of the sample are summarized in Table 1. Most of the participants were Caucasian, 40% were Catholic, and 65% held a master’s or doctoral degree; mean age was 47 years.
General Response and Themes
All participants had been exposed to innovative procedures including other organ transplants during their professional careers. Most (n = 21) maintained that facial transplantation had a very different gestalt than the other organ transplant patient care with which they had been involved. They contended that the experience of facial transplantation, compared with other innovations they had been part of, “reached another level.” As participants sought to describe this “other level” of experience, several (n = 8) used the word “awe,” whereas others (n = 4) described it as “surreal.” One said, “People can say what they want—it’s just another part of your body, like for people to give a loved one a kidney. But it’s way beyond that. Way beyond that.” This sentiment was reiterated many times and in many forms. Some described facial transplantation as being of greater magnitude than vital organ transplantation as “this operation transform(s) the patient’s life and really change(s) the experience of being a human being.” One said that, although he did not view facial transplantation differently from a scientific or mechanical viewpoint, from the nonscientific standpoint, it was “uncharted waters.”
The most frequently used words to describe the experience were “amazing, awe inspiring, challenging, exciting, exhilarating, fascinating, hopeful, inspiring, interesting, and rewarding.” Some participants also used the words “nerve wracking” and “frustration” when describing the experience, specifically about situations where they felt unable to adequately anticipate some aspect of the patient’s care given the innovative nature of the procedure. Phrases used by the participants to describe the experience were “a breathtaking experience,” “pushing the envelope,” “being on the cutting edge,” “kind of the blast,” “an incredible opportunity,” and “totally surreal.” One participant described the experience as “really awe inspiring. I mean, it’s unbelievable to be in the room. You can hear, especially with the first one, the gasps when it happens.” Another said: “I think it was just surreal, just kind of surreal. And people said it was the best thing they’ve ever been involved in.” Interestingly, despite describing the experience as “awe inspiring” and “surreal,” only a few (n = 3) admitted to having early skepticism about whether the procedure would actually ever take place, and no participant expressed opposition to the procedure in principle.
Two main themes emerged from the data: individual sense of purpose and esprit de corps. Individual sense of purpose describes the meaning that involvement in facial transplantation had for the participants. The individual sense of purpose theme is composed of three subthemes: getting it right (a vigilance to be attentive and thorough in providing care to assure a positive outcome), transforming a life (an empathic realization of the profound life-changing possibilities of the procedure), and spirituality (a heightened awareness of marvel and awe as a consequence of participation). The theme esprit de corps conveys the morale of the healthcare team members involved in facial transplantation and was expressed through three subthemes: leadership (trust in the altruistic motivations of the lead physician), teamwork (a respectful acknowledgment of the critical contributions of each member of the healthcare team), and environment (the social, intellectual, and historical architecture, which supported innovation at the institution). The thematic structure is pictured in Figure 1.
Individual Sense of Purpose
Getting it Right
Several participants described the planning process and the implementation of care for patients receiving facial transplants as requiring a comprehensive skill set that encompassed all technical and scientific knowledge specific to their discipline. They described this patient population as needing collectively intense physical, emotional, psychological, and spiritual care in contrast to other patient populations where one realm of care is often dominant. One nurse said: “It really brought me back to the basic foundation of nursing in—in an incredibly meaningful way.”
All clinical participants expressed an overwhelming feeling of responsibility to “get it right.” A number of participants who provided care during the postoperative phase expressed great “weight and worry” that they may miss a physical warning sign and be responsible for the graft failing. One said: “This was really quite weighty. And it made me think a lot about the responsibilities, and the licensure, and the preparation of people.” Participants reported this weight and worry as exaggerated when compared with caring for patients undergoing other innovative procedures. Some believed that this was likely because of the intricacies of the human face’s physical and emotional qualities. Others attributed the emotion to feeling a profound level of commitment to the donor’s family. One participant described her reaction as follows: “it’s such a gift that the donor family is giving somebody that you want to make sure that you do what you can, as much as you can to make sure that that gift goes through.”
Although the clinical practitioners expressed a high level of confidence in their ability to care for the multiple physical needs of the patients, many expressed individual hesitation and uncertainty about getting it right when addressing the issue of the “new” face with the patients. In approaching one patient about their reaction to their new face, one nurse said: “…you tread on that…you know, do you—should I, or shouldn’t I ask this question?” Many practitioners did not feel ready for this conversation. One nurse explained: “things that would come up in conversation were just kind of odd to talk about.” In addition, few clinical practitioners felt prepared to handle issues of identity with the patients should they arise.
Transforming a Life
All the participants perceived the patients’ pretransplant lives to be “unbearable,” and several of the participants involved in the patient’s clinical care felt morally compelled to transform their lives. Most believed it would be unethical not to attempt the procedure, despite the risks of the procedure and subsequent treatment. In addition, participants spoke about the transformation that must have occurred within the donor’s family when making such a “precious and incredible gift,” and many participants expressed a transformation of their own thinking because of involvement.
Some participants sought to describe the link between identity and the appearance of a person’s face. In many instances, this was a difficult undertaking, in part because of the high level of emotional reaction that it elicited. One participant summarized it as follows: “the face, in particular, is such an emotionally charged organ that when it is disfigured, it is—it is very—it’s a profound experience for the patient who experiences it. But it’s also kind of a profound social experience for anybody who meets that patient.”
A few members of the healthcare team were concerned about the effect that the surgery might have on the patient’s identity and “sense of self.” More commonly, however, participants dismissed these concerns as less significant citing that these patients were accustomed to a whole array of unusual problems and reactions from others because of their appearance. One participant viewed facial transplantation as “restoring” the individual’s identity rather than complicating or replacing it.
The topic of patient selection for the procedure elicited extensive discussion. The psychosocial background of some of the patients was discussed by many of the participants, and they questioned the impact of it on potential outcomes. They reported robust conversations on the topic with their colleagues. In some instances, it was difficult for the participant to articulate why the patient selection criteria for this particular procedure should receive such great emphasis as compared with other procedures, including other organ transplantation. Others speculated that the procedure had been worthy of a “different level of scrutiny” than other procedures because of the “sacrifice” of the donor’s family. In other instances, the participants asserted strong sentiments about the cognitive functioning and social and psychological stability of the patient that should be required for the procedure to be undertaken. In particular, two participants strongly believed that these criteria should play the defining role in establishing candidacy for the procedure. Many other participants reported having similar views in the early stages of the procedure and that extensive discussion with and among their colleagues on this matter was common. They identified the topic as “controversial” and generally theorized that it was because of limited resources, the “ultimate gift” of a face, and the financial liability of the procedure and subsequent treatment.
Many participants described personal transformations because of involvement in facial transplantation, however. They reflected on the transformation of their personal judgments and biases and those made by other members of the healthcare team. Most participants who admitted that they had expressed reservations about the patients selected for facial transplantation surgery were subsequently introspective about prior judgments, and only a few participants continued to have reservations about at least some of the patients selected, and two adamantly so. Many expressed that some of the patient outcomes were significantly better than they would have anticipated. One participant reflected on her early opinions and said: “I think, personally, it helped me learn to be careful of your judgments; and to just try and stay more neutral until you have all the facts, and find out and question things before you form an opinion.”
As one of the participants attempted to explain his personal experience, he said: “These patients speak to us at a very, very core, fundamental, profoundly human level.” As such, an attitude of “how can we not try this” resonated throughout many of the interviews. This sentiment was more strongly held than any concern about risks of immunosuppressant medications, fear of rejection, or potential complications to identity or psychosocial stability. Many of the participants expressed joy in contributing “even a small role in transforming a life,” and others believed that they had been “involved in something very special.” Moreover, when discussing their experience and contribution to the effort, many of the healthcare team members said that there was a strong spiritual component to the work.
Although most participants supported facial transplantation in the theoretical sense, many were unable to readily answer the question about donating their own face or that of the loved ones. Of the 19 participants who answered the question of donating their own face, 11 (58%) said “yes” and eight (42%) said “no.” Perhaps, even more striking were the responses to the question regarding donation of a loved one’s face. Of the 17 participants who addressed this question, only five (29%) said yes. The remaining 12 (71%) had extreme difficulty in conceptualizing such a donation. Despite their active involvement in caring for this patient population, most of the participants acknowledged not having had in-depth conversations with their family about the topic.
Twenty-two participants (84.6%) reflected on the impact that involvement in the procedure and/or subsequent patient care had on their spirituality. Sixteen (73%) reported a spiritual component to the work, whereas six (27%) related no spiritual component. Among healthcare team members involved in the intraoperative care of the patient, seven of eight (88%) expressed a poignant spirituality to the experience. This was most often related to the transformation of the patient, including witnessing the transfer of a “God-made part” from one human being to another. One participant described it in this way: “—it is one of the most amazing things when the face is first draped over the recipient, and you see this—you see them become humanized again, in a way. And so, that whole process of seeing the patient transformed is a very—it is a very emotional, spiritual experience. I’m not really a religious person. But it’s a—it is the closest that I feel to some sense of religion in what we do.”
Spirituality was also expressed in a variety of other experiences by other members of the healthcare team. One described it as a spiritual experience when a patient saw himself in the mirror for the first time. In this instance, the participant defined spirituality as “a desire to maintain his dignity.” Many participants also credited the donor families when discussing the spirituality of the experience. They expressed awe and acknowledged the courage that making such a difficult decision requires while experiencing such grief. Few were able to conceptualize what the experience would be like for a family and marveled at the strength they exhibited.
One area that several participants had not fully resolved was the enormity of the financial burden of these procedures and lifelong treatments. Some wondered if the expense to the healthcare system might be better spent caring for “several or dozens of women with breast cancer.”
Esprit de Corps
Tremendous enthusiasm and appreciation was expressed about the opportunity to have been involved in such an innovative undertaking. Participants expressed “honor,” “pride,” and “joy” at being included in something that was “a very big deal scientifically and socially.” Participants spoke with fondness and reverence for the leadership of the effort and were respectful and cognizant of the strength of the interdisciplinary teams caring for the patients. In addition, participants believed their institution provided an environment, which exhibited a social, intellectual, and historical architecture supportive of innovation “steeped in history.” Together, the subthemes of leadership, teamwork, and environment constitute the theme esprit de corps: a positive morale and a capacity of the team members to exhibit enthusiasm and strong regard for a common goal of altruistic and ethical care of the facial transplant patient. Across and within disciplines, the thought processes toward positive patient outcomes and a profound level of commitment were shared.
The first subtheme was leadership. The leader of this innovative effort was defined by the participants in terms of a “sincere and ethical desire to help the most severely disfigured patients.” Without exception, there was a belief in the altruistic motivation of the lead surgeon, which instilled trust in the other members of the healthcare team, caused them to desire involvement in this innovative procedure, and gave meaning and direction to the effort. This meaning and direction allowed the care team members to use their energies to develop care protocols specific to their disciplines, rather than debate the goals, objectives, and ethics of the innovation. Importantly, several participants also articulated the role of the lead surgeon’s mentor as an honorable and authentic leader, which similarly created an enormous confidence in and vitality to the undertaking.
The second subtheme was teamwork. All participants were cognizant that a multidisciplinary healthcare team was involved in facial transplantation surgery and patient care. Most were able to articulate most specialties involved and respectfully acknowledged their contributions. One participant described the team effort in this way: “These are massive undertakings that involve a huge number of people. It’s pretty—it’s a logistical circus in the sense—not in the negative sense. But there’s a lot of moving parts.” Most were able to articulate the importance of a team approach in providing optimal care. Two types of teams emerged.
The first type of team was intradisciplinary. In particular, participants from the plastic surgery physician team expressed an exceptional level of collegiality, which philosophically and logistically supported the undertaking. Although specifically expressed by members of the division, the relationships within the division were observed and admired by other members of the healthcare team as well. This spirit of collegiality contributed to a sense of personal well-being and tremendous cohesiveness. The significance of the roles of mentor and mentee and generational support within the division was palpable:
You’d think, in these types of things, there’s a lot of egos that would be clashing, and people are kind of muscling in to take different parts of the case. That actually does not happen at all. It’s pretty seamless…people are willing to help each other out in a very real way here. And it’s more than just lip service. It’s really kind of an esprit de corps that characterizes the division.
The second type of team that emerged was interdisciplinary. This type of team was made up of multiple individuals with discipline-specific skills, which were coordinated to achieve a common goal. One example cited was the collaboration between the clinical staff of the hospital and the New England Organ Bank, which was thought by one participant to be unique in the country. Another example involved care of a donor patient and their family in the intensive care unit.
The most poignant example of the success of an interdisciplinary team however was conveyed by several of the participants. This team consisted of those individuals responsible for the intraoperative care of the patients during the facial transplantation procedures. The participants from these teams expressed great reverence for the interdisciplinary teamwork that occurred. Many felt that the commitment and level of teamwork was exceptional and likely atypical of other clinical situations. One member of the intraoperative team described it this way:
I mean, I’ve been involved with other surgical procedures that have not been that common, everyday thing that I’ve helped with over the years here, working with different surgical teams. None of those were quite the same as how far out front this was of what we’ve done here. And I just really love being part of that team.
As the participants reflected on their overall experience of participating on teams they viewed as highly functional, they discussed activities that ensued during the preparatory and training phases of the procedure, outlined areas for improvement, and made recommendations to enhance the program going forward.
The third subtheme was environment. In addition to a strong intellectual environment described earlier in the leadership and teamwork sections, participants described both the historical and ethical environment at their institution as providing the architecture for successful innovation. Although these were more intangible elements to the healthcare team, they were emphasized and recognized as critical elements in a similar way. The value of demonstrated success with innovation at the hospital throughout its history and the belief that the work was being undertaken in an ethical environment were recognized and appreciated by many members of the healthcare team.
Many participants acknowledged a historical “aura of support” citing the hospital’s work carrying out the first kidney transplant as a principal example. One participant explained, “We’ve been doing kidney transplants [here], especially before anyone else. So, there’s more than 50 years worth of patient experience.” Another explained, “it’s really good to be at an institution where you have both a historical support, and also an immediate support, that everyone is prepared to pitch in and help, and offers their expertise.”
No participant expressed concern that the institution’s motivation to undertake the effort was fueled by any factor other than a desire to provide ethical and compassionate care. Participants expressed very few ethical concerns about the undertaking other than those specific to patient selection presented earlier. The participants strongly believed that altruism was the foundation of the innovation at the institution. Participants vehemently dismissed ego, fame, or fortune as primary motivating factors. In fact, this core belief comforted some who admitted that they were not fully informed about the ethical issues in the literature regarding facial transplantation.
Most participants were aware that the procedure had been regarded as ethically controversial when it was in the conceptual phase. Most were also able to affirm that they were aware of specific ethical issues when they were presented to them. None, however, reported any of the ethical concerns mentioned were troubling enough to them to give them pause or tempt them to choose not be involved. Some participants were aware of colleagues who had chosen not to participate in the care of this patient population based on ethical issues, although this was not widespread and they did not speculate on the reasons.
In general, the participants could be separated into two groups with regards to knowledge about ethical issues: those who had been fully informed and those who had been anecdotally informed. The level to which a participant was informed was generally reflective of their role on the healthcare team and the length of time of that involvement. Those who had been involved in the planning stages of the procedure had cared for the patients over a long time, and those responsible for releasing information to the general public were able to articulate a wide range of issues in the literature and fluently offered explanations of how each issue had been addressed within the institution. This group of participants was aware of IRB restrictions and requirements regarding patient selection and clearance. In particular, they knew that an earlier IRB requirement that limited patient inclusion to those who were immunosuppressed had been removed. They believed that efforts had been made to protect patient autonomy regarding decision making. They were well informed about a range of ethical issues: immunosuppression, the question of an ability to obtain a fully informed consent, potential challenges with identity, the necessity to have an alternative plan should the graft fail, and the economics of the procedure. They were also able to speak to the future implications of the procedure for a broader group of patients hence believed they had an ethical responsibility to assure its development. There was a degree of comfort among them, and this group believed that the patient selection process had been fair, patient centric, and ethical. Overall, it was clear that this group of participants had spent considerable time reflecting and discussing the ethical issues inherent to this surgical innovation.
The other group of participants, those who had been anecdotally informed of the ethical issues, focused on a few select issues, specifically patient selection criteria and the finances supporting the effort. When questioned, participants believed that the patients were well informed, to the extent possible, of the postoperative course and lifelong medication regimens. They expressed concern and fear however that some of the patients might be unable to adhere to the complicated postoperative care routine and that some of the patients appeared to have limited social supports in place to assist them. Many expressed dire concern about the financial responsibility of such lifelong care. One participant said: “And then there’s a notion of kind of larger societal concerns about allocation of finite resources, and whether it makes sense to spend the money that we have—what little of what we have right now on facial transplantations, when that money could be spent to take care of 100 diabetes patients, for example.”
Participants widely acknowledged that the surgical team and the hospital had received extensive positive publicity following the procedure; however, this was not viewed as a motivating factor in the effort. Most speculated that all who were involved in the procedure, as well as the hospital’s administration, were likely “quite pleased.” One participant described it as follows:
At the same time, I think a lot of good will and a lot of good press was obtained by the hospital. So, it’s kind of a win/win situation. But the most critical thing is the patient is the one that win/wins. And as a by-product of that, I think everyone involved with it has a positive outcome, including the hospital.
There was a great deal of discussion among the participants about the media coverage of each of the patient’s hospitalization and public disclosure of the nature of the patient’s injuries, which illuminated potential ethical concerns on the part of some of the participants. Some denounced the media as intrusive and a violation of the patient’s privacy and therefore presented ethical concerns. Although the participants understood why the recording of a historical procedure might be an important undertaking, many expressed frustration and viewed this element as a risk to patient care. This was particularly true of the operating room staff who had concerns about asepsis and patient privacy.
A plan was crafted between members of the public relations department and each patient during the presurgical period. The plan included the type, timing, and scope of information that would or would not be released to the media. Honoring the patient’s wishes regarding the release of protected health information was paramount.
Media coverage took several forms, and some participants wondered if one particular media event that had taken place, and resulted in extensive national coverage, was really in the best interest of the patient. Others wondered if the patient really understood the implications of involvement or felt coerced to participate, although none indicated that they believed that was the case. Several participants wondered if the same type of publicity would have occurred if the outcomes had not been positive. Some surmised a delay in the media releases until the patients were assuredly more stable, so that the surgeons could tell a “confident story,” and wondered if this could be interpreted as a maneuver to control facts and therefore a potential ethical problem. One participant believed the delay was appropriate: “there’s a positive side to—you’re not just showing off. You’re actually telling a very interesting story, with the hope that more people may become donors. And so, it would help other people.”
In spite of the perceived media intrusion, there was an aura of respect and appreciation for the efforts of the hospital community to respect the patient’s privacy immediately before and after the transplant procedures. Most participants expressed amazement at the ability of the hospital community to maintain a level of secrecy about these procedures during the immediate perioperative period. The participants were complementary of the institution as a whole around this, although a few caregivers expressed concern that lines of communication were at times too constrained and inhibited planning patient care.
As this is the first study that explores the personal attitudes and experiences of the healthcare team members involved in facial transplantation, it expands a narrow evidence base. Importantly, it supports the Institute of Medicine’s recommendation of a focus on interprofessional practice and education (Institute of Medicine, 2013).
The healthcare team members in this study identified areas of practice in need of further development. These included learning to become more comfortable with discussions about the “new” face with the patient and, in particular, about sensitive topics such as how one might want to deal with past photos, a blended hair color, and the patient’s ability to be recognized in public. Although multidisciplinary protocols for roles and responsibilities for facial transplantation program development are now found in the literature (Bueno, Diaz-Siso, & Pomahac, 2011; Siemionow & Gordon, 2010a), there exists a need for discipline-specific protocols to be reported as well. Extensive case reports and other short-term findings related to facial transplantation are now available in the medical literature, but less clinical information and fewer research findings are available in related fields.
The professional caregiver’s perception of involvement in solid organ procurement and transplantation procedures has been found to be morally complex and deeply important (Hibbert, 1995; Regehr, Kjerulf, Popova, & Baker, 2004; Wang & Lin, 2009). Studies addressing the perception of the healthcare team members toward facial transplant surgery had been conducted before the first facial transplantation procedure (Clarke, Simmons, White, Withey, & Butler, 2006; Clarke et al., 2007; Mathes et al., 2009; Prior & Klein, 2011; Vasilic et al., 2008). This was the first study to explore the perceptions of those who have actually participated in the procedure and related patient care. This study found that many potentially controversial topics that were identified in the early studies were mitigated by an overwhelming sense of moral obligation of the participants to help patients with complex cosmetic, functional, and mechanical facial deficits. The participants in this study unanimously believed that the risk–benefit ratio of the procedure and subsequent treatment overwhelmingly supported its implementation.
The findings of this study are in contrast to some early critics of the procedure who argued that facial transplant surgery was not “life saving” in the same manner as heart, lung, or kidney transplants (Morris et al., 2004; Strong, 2010). Many participants in this study felt that the “life giving” nature of this procedure made it an even more important undertaking than other organ transplantation efforts they had been involved with, supporting the published views of proponents of the procedure (Alexander, Alam, Gullane, Lengele, & Adamson, 2010; Clarke & Butler, 2009; Pomahac, 2011).
Overall, participants believed that the risk–benefit ratio of facial transplantation favored proceeding with the procedure in the clinical scenarios with which they had been exposed. Participants’ experiences were challenging and rewarding, and they expressed personal fulfillment from the opportunity to be involved in the transformation of another human being’s life. Moreover, the entire effort exhibited highly effective team work, which displayed esprit de corps, was guided by superior leadership, and illuminated the importance of the clinical, intellectual, and historical environment of the institution where the procedures took place.
Several other ethical issues during the conceptual phase of facial transplantation were presented, which assessed whether the benefits of the procedure outweighed the risks including the risks of lifelong immunosuppressive therapy and potential medical complications (O’Neill, 2009; Powell, 2006; Renshaw et al., 2006; Wu et al., 2009), the ability to obtain a fully informed consent and assure patient autonomous decision making because of the innovative nature of the procedure (Reitsma & Moreno, 2006), the financial burden for such procedures absorbed by the healthcare system (Kalliainen, 2010), and situations whereby the patient might fail to comply with necessary treatment to preserve their transplant, which would result in a burden to the healthcare system, including subsequent surgical interventions and treatment. The participants in this study believed that the risks of long-term immunosuppression after a facial transplant, although concerning, were acceptable to them.
Limitations are primarily reflective of the rare and innovative nature of facial transplantation. As such, transferability of findings may be limited. In addition, data collection activities were limited to one setting. It is possible that responses were affected by the status of the interviewer as coworker of some of the research participants. The notoriety and media interest of the procedure may have influenced participant’s responses. Although no indication of such was evident, participant’s responses may have been influenced by their employment status and a potential fear of retribution.
Significantly, at the time of data collection, participants had had experiences with patients having generally positive outcomes. It is unknown if participant views would be different if any patient had had negative results. It is also unknown if those who received an invitation to participate but did not respond, or chose not to participate, did so because of negative perceptions about the procedure. Therefore, the results may reflect only those with positive perceptions.
Facial transplantation has potential to greatly improve the functional health and quality of life of persons with severe facial disfigurement, but the procedure raises ethical, psychological, and clinical challenges. Healthcare team members involved in facial transplantation meet these challenges by finding individual purpose and by working with esprit de corps as a group. Further research is essential to obtain more complete understanding of the responses of health team members to providing care to donors, recipients, and families involved in facial transplantation procedures.
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