Psychological, Social and Ethical Issues

and Veronica Tomasello2



(1)
Department of Plastic Surgery and Burns, University Hospital Vall d’Hebron, Barcelona, Spain

(2)
Cannizzaro Hospital, Catania, Italy

 



Abstract

The success of face transplantation throughout the world has positioned this technique as a new option for patients presenting with severe face deformities. However, the transplantation of a cadaver’s donor face still poses important psychological, social and ethical issues into the medical community. Current consensus advises doctors to evaluate potential candidates within a multidisciplinary team in a tertiary centre performing solid organ transplantation on a daily basis. Core members of such multidisciplinary team include plastic surgeons, immunologists, infectious diseases specialists, psychiatrists, psychologists, transplant surgeons, transplant coordinators, rehabilitation specialists and social workers, among others.


Keywords
Psychological impactEthicsSocial support



4.1 Psychosocial and Ethical Considerations of Face Transplantation


The success of face transplantation throughout the world has positioned this technique as a new option for patients presenting with severe face deformities. However, the transplantation of a cadaver’s donor face still poses important psychological, social and ethical issues into the medical community. Current consensus advises doctors to evaluate potential candidates within a multidisciplinary team in a tertiary centre performing solid organ transplantation on a daily basis. Core members of such multidisciplinary team include plastic surgeons, immunologists, infectious diseases specialists, psychiatrists, psychologists, transplant surgeons, transplant coordinators, rehabilitation specialists and social workers, among others.

A decade ago, Siemionow and Ogich pointed out that patients affected from severe face deformity would improve dramatically their quality of life with face transplantation. Thus, they signalled that patient should be involved in the decision-making process of face transplantation. Still, in 2004 the French National Ethics Advisory Committee affirmed that it was too soon for face transplantation accreditation and did not grant permission for total face transplantation, since they considered that the discipline could not answer positively the risk–benefit ratio dilemma. In November 2005, though, the same French committee granted permission for the first partial human transplantation. Organ transplantation carries with it a series of psychosocial problems. They are exacerbated in the case of face transplantation, specially for questions of identity, communication, psychological vulnerability, the aesthetic results, possibility of death, treatment compliance and the patient’s and relatives’ reaction to a new identity. These are scientific and ethical issues that need to be addressed by any face transplantation protocol. The first human transplantation protocol approved ever by an Ethics or IRB Committee occurred in 2004 in the Cleveland Clinic (Dr. Siemionow, USA). The accreditation of a human protocol must include the inclusion and exclusion criteria, patients’ screening, informed consents for recipients and donors and the multidisciplinary team to develop the programme (Table 4.1). Only under theses auspices—the “face transplant protocol”—patients with severe face deformity may be evaluated for face transplantation indication.


Table 4.1
Requirements for face VCA

















1. Centre with proven solid organ transplantation experience

2. Tertiary/university centre with all clinical and research services on site

3. Plastic surgery department with proven experience in microsurgery and craniomaxillofacial surgery

4. VCA team

5. Face transplant VCA protocol approved by the Ethics Committee

6. Accreditation by transplantation bodies and organ procurement organisations


4.2 Psychological and Social Aspects of Transplantation



4.2.1 The Psychological Response


The development of organ transplantation programmes has had an important effect on the research for the human psychological response and adaptation in recipients. It has been traditionally accepted that organ transplantation can produce a series of stressing factors and may trigger a change in the psychosocial adaptation. They include:



  • The longevity of the graft (fear for transplanted organ failure)


  • Fear for rejection episodes


  • Long-term anxiety regarding the potential side effects of transplantation immunosuppression protocols, including viral infections and malignant tumours


  • The personal responsibility on the success or failure of the transplanted tissue/organ: medication regime adherence/compliance, changing social lifestyle, monitoring signs and symptoms, the chronic dependence to an ambulatory setting (“feeling ill”)


  • The integration of the transplant in self-image and self-identity


  • The emotional response related to organ transplantation (receiving a transplanted organ; guilt feelings, specially related to donor and donor’s relatives)

When we consider face transplantation separately, all these fears, guilt feelings, anxiety, etc. are amplified (Table 4.2). Reasons for this behaviour include questions of identity and communication, personal psychological adaptation to deformity and support.


Table 4.2
Psychological response to face transplantation

























Fear for transplant failure

Fear for rejection episodes

Anxiety regarding side effects and complications

Self-responsibility on the success of the transplant

Treatment adherence

Feeling ill (becoming chronic patient)

Integration in self-image

Emotional response regarding donors

Questions of identity and communication

Personal adaptation to deformity


4.2.2 Identity and Communication


Our face is extremely relevant for the development and maintenance of our identity. It helps us and others to understand ourselves, our whereabouts, who we are and our prospects. If we are deprived of a face, we can no longer recognise ourselves; our body image disaggregates, causing a profound existential crisis. We may follow, thus, that introducing a new face (that of the others, the donor) may bring problems even worse than those pre-existing, especially in the area of identity.

Conscious and unconscious face expressions are necessary to relate and communicate with the rest of the world. One-third of the communication with other people is non-verbal, depending on face expressions. The coordination of face muscles, nerves and tissues is essential for this part of human interaction. There are different pathways that connect face structures and cerebral functioning, recognising our status of expression, i.e. smiling signals neuronal connections that in turn produce a feeling of well-being. More research will be necessary to understand how the face mimic influences our psychological status.


4.2.3 Psychological Adaptation to Deformity


It is well supported in literature that psychological stress is not necessarily proportional to the severity of face deformity. Some patients function well with severe devastating injuries, whereas others show important stress and anxiety with small scars and minimal deformities. When we consider trauma patients, it is not uncommon to diagnose important levels of stress and anxiety, although it is not per se a formal indication for transplantation. The same patient may show excellent psychosocial adaptation in the rehabilitation and chronic phase. However, we may not assume, though, that time is a good remedy for face deformity adaptation. Patients that adapt well have in common a high threshold of self-esteem, good family and social support, excellent communication skills and a sense that the deprivation of a normal face should not impede happiness and good quality of life. On the other hand, patients that show difficulties in social adaptation believe that physical appearance is of paramount importance for well-being and success. They show important levels of anxiety, depression and psychosocial difficulties, searching surgery to improve physical appearance and improve their social interaction and sense of well-being. In general terms, this group of patients is psychologically very vulnerable, although they show a high motivation for surgery and compliance. Still, non-realistic expectations regarding surgical outcomes may be present. They require strong team support since they are very vulnerable during the postoperative period, specially regarding uncertainty of final outcomes and treatment side effects. When we deal with this type of patients, it is imperative to follow them closely. We understand that some of our treatments do not offer a complete resolution of symptoms, and secondary deformities may be present. It is also uncertain whether the salutary effects of face transplants, particularly in the sphere of psychosocial improvement and social interaction, will be maintained over time.


4.2.4 Psychological Support for Face Transplant Patients


A good psychological support is essential throughout the whole process of face transplantation for recipients, family members and donor’s family and relatives. Specialised professionals well versed in face deformity and solid organ transplantation should perform it. Psychiatrists and psychologists are core members of the face transplant team, dealing with:



  • Validation of face transplant recipients; a negative report contraindicates face transplantation.


  • Understanding risks and benefits of the proposed treatment.


  • Therapeutic support during the search for donors.


  • Therapeutic support during the post-operative period and long-term support.


  • Recipient’s family support during the whole process of transplantation.


  • If necessary, donor’s family therapeutic support.


4.2.4.1 Validation of Face transplantation Patients



Motivation and the Patient’s Expectations

Patient’s journey through a face transplantation treatment process is not an easy one. A long waiting time during the search for donors should be expected, coupled with a high stress level focused on the expectation of a complex operation, the possibility of complications and side effects, the adaptation to a new identity and the possibility of rejection and even death. Patients’ expectations are usually very high; they present with important aesthetic and functional deformities, and many of them have gone through other plastic surgery interventions. The face transplant team must understand completely all issues and problems that motivated the patient to search for a face transplantation, address them and create a treatment master plan that can deal with the deformity and all functional problems (Table 4.3). It is very important to address non-realistic expectations in the preoperative period; failure to do so may deal to important postoperative problems, specially with issues of patient compliance with treatments and immunosuppression protocol drugs, psychological adaptation, adhesion to rehabilitation programme and final functional outcome.


Table 4.3
Validation of face transplantation patients















1. Evaluate patient’s motivation and expectations

2. Past treatment adhesion (patient’s compliance)

3. Communication issues and quality of life

4. Explore family and social support

5. Psychological and psychiatric issues

The majority of patients will show different levels of anxiety in the area of resilience and the confrontation with the unknown, the possibility of side effects and complications and the new identity. They must be thoroughly evaluated and reassured when necessary to be able to go through the period of search for donors.

Face transplantation is a non-saving procedure; in other terms, the operation is aimed to increase quality of life. Comparing to solid organ transplantation, it mimics renal transplantation; it is performed to improve the life of patients, stop dialysis and provide patients with a long-term superior treatment. However, when dealing with risks and possible outcomes, we can compare it to heart transplantation: should the transplant failed, only a new transplant could solve the problem. Ultimately, death can be the outcome. Consequently, a good cognitive level is necessary to understand the risks and the benefits of the proposed treatment. Good motivated patients should be assessed by the transplant team and evaluated that the patient understands that the possible benefits and the potential improvement in quality of life surpasses the potential risks and that patient accepts them as part of the treatment. The expected improvement in quality of life and the manner the patient feels and accepts it should be superior to the potential morbidity and mortality.


4.3 Protocol Adhesion, Preoperative and Postoperative Support


Good adhesion and patient’s compliance with the postoperative protocol is necessary for the success of face transplantation. When we compare data regarding other type of solid organ transplantation, it is reported that as much as 46 % of recipients of solid organ transplants do not adhere to the postoperative protocol. In order to make an approximation to the patient’s own risk of protocol non-adhesion, team members evaluate the past medical history and the patient’s adhesion to clinic visits and other types of treatment protocols followed in the past. Patient’s behaviours reflecting clinic no-shows, failure to perform treatments and tests and stopping at own risk medications are red flags that need to be addressed. It is indeed a complex interaction of different factors, including personal and cultural characteristics, education level, understanding instructions and the intrinsic complexity of the treatment. They will signal future adhesion to the transplantation protocol, including in these considerations the familiar and social support, which are also important pillars in patient’s compliance. On the other hand, it is relevant to assess the capacity of patients for changing the environment and different lifestyles: it is not uncommon that after the transplant, sun exposure may be limited, housing may be required to be changed, and pets may not be allowed. We should remember that many patients may enter the face transplantation programme, but only few may have a true indication for a face transplant. Tertiary centres are best positioned to offer patients with face disfigurement psychological support and all types of treatment options. Those that do not fulfil all requirements for face transplantations have to be followed, supported and offered other reconstructive treatment options if they are indicated.

Patients that have been accredited as potential candidates and that have a true indication for transplantation enter the programme. It is not uncommon that patients have to wait a long time during the search for donors. During this period a good support and periodical visits to the team members are fundamental. Support is delivered constantly and reinforced when needed. During this period the patient’s expectations are readdressed, and different issues regarding the intraoperative and postoperative period are reviewed.

During the postoperative period, care has to be implemented to detect any sign of stress, anxiety and/or depression. Patients are normally highly motivated and have been prepared to the postoperative journey. However, communication problems (oral impairment, tracheotomy), difficulties moving the newly acquired face (postoperative face paralysis), feeding problems, etc. may pose an important challenge to the patient. In this phase the team should pay attention to all signs and symptoms for psychological adaptation (Table 4.4). One of the most relevant signs is the adaptation to the new identity, watching the new appearance in the mirror and its acceptance. In general terms, patients should be allowed to see his/her new face as soon as the patient requests to do so. The general response to all face transplants so far is a positive reaction, since patients accept their new reality as new human beings, regardless of the true appearance (they feel normal again). Following this event, the new self-image is rapidly integrated in the imagination and, in the cerebral plasticity, soon forgetting the deformed face appearance. Patients then remember two selves, the one prior to the deformity and the new identity. Patients that present with congenital deformities or benign tumours (i.e. neurofibromatosis) feel confident and normal for the first time in their life.


Table 4.4
Special issues that complicate social and personal adaptation in the postoperative period

















Communication problems (oral impairment, tracheotomy)

Face paralysis

Feeding problems

Sensory recovery

Reactions of others

Mass media interest

Patients are soon requested to take care of the face, to massage scars, to touch the new face and to work together with rehabilitation services; all these manoeuvres help to integrate the new face rapidly. Questions, curiosities and gratitude regarding donors may be necessary to be addressed during this phase of recovery. At the final part of the admission to hospital, the team has to address the programme of gradual social reintegration into society. Other issues that may arise are society and mass media interest-communication. We have to remember that face transplantation is aimed to improve quality of life, its main goal being to reintegrate into society patients with face disfigurement as full active members.


4.4 Life Following Hospital Discharge



4.4.1 Living with a New Appearance


Patients that go through a programme of face transplantation experience three different phases (Table 4.5). Firstly, patients are evaluated; an indication is performed and will go through a long time waiting for a donor search. As soon as the face transplant is a reality, patients are admitted to the hospital and have a hospital stay that may last a few weeks depending on the complexity of the transplants and the potential complications. During this phase the patient is coached and supported, creating a protective environment. Finally, the recipient is discharged from hospital; this final phase may produce new feelings of stress and anxiety. Patients will return to their normal environment and family and social circle; they will be exposed to family and friends’ reactions, both to their new appearance and their new communication skills. This uncertainty will mark also the future success of the face transplant. It will be necessary to have a constant support for the patient and family. The patient needs to understand that the team’s support is ready and can be obtained in a rapid manner anytime during this period. It is not only a question of the new face appearance acceptance, but also to face and learn strategies to control emotions and the new relationship with others. Face sensibility and function will improve constantly during the first year, changing gradually the communication skills and the way the patient relates with people. If mass media has been involved or press releases performed, the patient may be recognised by strangers and attract attention. This situation can be positive for some patients, although may be distressing for others, requiring attention and modulation.
Apr 2, 2016 | Posted by in General Surgery | Comments Off on Psychological, Social and Ethical Issues

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