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H. Nishikawa
Methodology ofStudy onFacial
Norms inEthiopia
One aspect of this mission is to pilot potential
eld studies on individuals we meet in the areas
visited. The aim is to try and discover what their
frame of reference is regarding normal and
abnormal facial appearance. What do they consider attractive or less attractive? Are such concepts totally different compared to Western
perceptions? The null hypothesis of a PROMS
study in Ethiopia would be that both Western and
Ethiopian aesthetic appreciation are based on
similar parameters of facial proportions and
structure (i.e. what we fancy so do they).
However, the appearance of mature women of
the Mursi tribe would tend to highlight how our
aesthetic values are probably different
(Fig.35.5).
A possible method would be to show photographs of ethnic faces to age-matched cohorts to
European and Ethiopian subjects and compare
their responses statistically. Kappa analysis can
be used to analyse subjective variables. There
would be two sets of grouped responses
permitted.
Normal or Abnormal Ordinary,
Attractive, Beautiful, Ugly
First the responder will decide if the photograph
of the face is normal or abnormal. Then a second
question will be asked. Is the face, in terms of
cosmetic appearance, ordinary, ugly, attractive or
beautiful? We have to inform the informer that an
immediate impression is all that we want. The
methodology would not be valid if it transpires
that communicating these requests is impossible
or their responses are totally unreliable. It is also
on the supposition that the words normal, beautiful, ugly, attractive and abnormal exist in their
language.
It may also transpire that simple contact
between our culture and theirs would instantly
alter all natural behavioural responses. This is
analogous to Heisenberg’s “uncertainty principle”; we can never study anything accurately
because as soon as we attempt to measure a phenomenon, it will instantly alter its natural steadystate characteristics. Therefore, it is important to
have the services of an accurate translator if we
ever attempt to carry out such a study. If the
translator is an anthropologist, then further
insight may be gained as to the nature of their
aesthetic preferences rooted in culture and
tradition.
The Eect ofFacial Deformity
inEthiopia
I was very much personally moved on witnessing
several very deformed noma patients breastfeeding (Fig.35.6). Apparently, devoted spouses also
usually attended them. It would be interesting to
understand the sociological weight of the facial
appearance in an individual’s integration into
African society. Maybe the anthropologist may
inform us the width of the hips or the size of the
breasts and buttocks or height is a far more valued aspect of beauty in their culture and for mate
selection. I am not trying to be facetious but
expressing my total ignorance of their cultural
values. If, for example, we discovered that facial
deformity has little sociological impact in their Fig. 35.5 Woman from the Mursi tribe
35 How to Approach NOMA and Facial Infections, Trauma and Tumours Through Charity Missions…
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a desire to please us. Perhaps the anthropologist
could give us some insight as to how to ask such
personal and blunt questions. We have no idea if
such questions are culturally acceptable or
understandable in their society. However, if it
can be shown that surgery has been benecial
not only functionally but also sociologically,
then this would be circumstantial evidence that
many of our concerns about motivation and out-
Fig. 35.6 Breastfeeding woman with facial deformity
caused by noma
come are not valid and that aesthetic and social
benchmarks are perhaps similar or comparable
to ours.
world, then it could be argued that the only purpose of treating a facial abnormality would be for
functional reasons only. A searching analysis of
Conclusions
motivation could have fundamental implications
on patient selection by the FA. It is therefore
desirable to meet potential patients with facial
deformity during this mission to try and determine their status and condition in society. We
should determine whether they are isolated or
fully integrated.
Should any of these individuals we encounter
wish for surgery, we should try and understand
whether their motives are the same as our surgical aims and whether it is possible to make them
understand how we intend to carry this out. It
would be important to ascertain whether their
motive is just nancial or their expectations are in
fact totally mismatched with what FA can technically offer.
Lastly, we need to try and nd a patient that
we have already treated for facial deformity and
determine whether we have in fact improved the
quality of life. An Ethiopian PROMS would
undoubtedly be hard, and again a reliable translator/anthropologist will be required. The following questions may be asked:
1. A non-operating mission to remote areas of
Ethiopia will allow us to initiate pilot studies
on the indigenous perceptions of facial deformity and normality.
2. A benchmark of what is normal, abnormal,
ordinary, beautiful or ugly (unacceptable)
could be established.
3. It is an opportunity to educate operating clinicians as to the true outcome of complex surgery undertaken to correct facial deformity in
the long-term setting of the patient’s natural
environment.
4. A more accurate picture of outcome (functional and psychosocial) may be achieved if
analysis of potential pre-operative and denitive post-operative patients undertake a
modied or simplied form of Ethiopian
PROMS.
5. The data and impressions acquired may allow
FA to improve pre-operative assessments for
the future and could alter the type of cases that
FA target.
6. There is likely to be some academic mileage if
• Are you better?
these pilot studies are undertaken.
• Are you happier?
• Are you pleased?
• Are you less self-conscious?
References
• Are you more accepted by your friends and
family?
These questions may have no meaning to
them, or the answers may also be invalidated by
1. de Jong M, Boehringer S, Kayser M, Wollstein A, Ruff
C, Dunaway D, Hysi P, Spector T, Liu F, Niessen W,
Koudstaal M, Wolvius E.An automatic 3D facial landmarking algorithm using 2D Gabor Wavelets. IEEE
Trans Image Processing. 25(2):580–8.
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H. Nishikawa
2. Anand A, Campion NJ, Cheshire J, Haigh T, Leckenby
J, Nishikawa H, White N.Analysis of cosmetic results
of metopic synostosis: concordance and interobserver variability. Author information. J Craniofac
Surg. 2013;24(1):304–8. https://doi.org/10.1097/
SCS.0b013e318272dacb.
3. Ward J, Mc Alistair W, Drinivasan D, Rodrigues D,
Solanki G, White N, Nishikawa H.A subjective evalu-
ation of pre- and postoperative cosmesis following
calvarial remodeling for non-syndromic sagittal synostosis. University of Birmingham, and The Healing
Foundation.
4. Edler RJ.Considerations to facial aesthetics. J Orthod.
2001;28(2):159.
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Infections, Trauma andTumours
Through Charity Missions: Ethics
ofSurgical Charity forComplex
Patients
HiroshiNishikawa
36
Introduction
Medical ethics describes the moral principles by
which doctors must conduct themselves. There
are four pillars of medical ethics [1]:
1. Benecence: Doing good.
2. Non-malfeasance: Do no harm.
3. Autonomy: In medical practice, autonomy is
usually expressed as the right of competent
adults to make informed decisions about their
own medical care. The principle is perhaps
seen at its most forcible when patients exercise their autonomy by refusing life- sustaining
treatment.
4. Justice (in the context of medical ethics): is
the principle that when weighing up if something is ethical or not, we have to think about
whether it’s compatible with the law and the
patient’s rights and if it’s fair and balanced.
However, with regard to the principle of justice for healthcare delivery as a whole, it
refers to a fair and equitable distribution of
health resources.
H. Nishikawa (*)
Craniofacial/Plastic Multidisciplinary Department,
Welbourne Center and Birmingham Children
Hospital, Birmingham, UK
The Meaning ofFour Pillars
1. The four pillars of medical ethics imply that
there must be a universality of medical standards [2]. In reality, this is primarily a theoretical foundation that frequently does
coincide with practical reality. In practice,
these ethical pillars have variable effects on
the doctor working a long way from his native
country, in a medically underdeveloped country, which may be very far removed culturally,
socially and politically, from everyday practice. Such conditions certainly confront many
foreign doctors working in Africa, Asia and
South America. As an example, the charity
Facing Africa was set up to help patients in
Ethiopia suffering from a debilitating condition called noma. This disease usually affects
children who are malnourished. It starts as an
infection in the mouth that eventually destroys
soft tissue and skeletal structures of the face.
The mortality rate is 90%, and among the
children who survive, many are left with
severe facial deformity and functional problems such as ankylosis (the inability to open
the jaw). The treatment is not possible without
experienced reconstructive plastic and maxillofacial surgeons, anaesthetists, nurses,
administrators as well as the brave scouts who
explore the countryside for suitable patients.
Management of these patients requires a system of pre-assessment and aftercare along
© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023
M. A. Hardy, B. R. Hochman (eds.), Global Surgery, https://doi.org/10.1007/978-3-031-28127-3_36
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with means to deliver complex surgery. To
perform the major reconstructive operations,
specialised equipment is needed along with
hospital facilities.
2. The strategy of collaborating institutions or
specialist groups is to bring their expertise to
the underserved countries without conditions
but with certain prerequisites in order to be
able to full all the functions effectively and
safely. The prerequisites include the services
of a hospital with appropriate facilities and
services to full the goals of the mission and
ensure that there is continuity of care once the
visiting providers leave. The advantages of
this paradigm is that usually the surgical and
anaesthetic specialists have a range of skills
which permit broader functions, which
include a variety of operations other than
noma and general anaesthesia for all procedures. The Facing Africa group, for example,
has helped patients who had facial deformities
as a result of trauma and large benign tumours
and medical conditions such as vascular malformations, leprosy and neurobromatosis.
This group, by not restricting its contributions
to treatment of patients only with Noma, has
saved many lives, improved function and
restored appearance in many patients over the
years. The mission, such as Facing Africa,
encounters many ethical problems illustrated
by Samaya’s case. She is a little girl who was
found begging on the streets of Addis Ababa
and brought for care by the group.
Illustrative Case ofaReal Problem
andits Solution
1. Samaya was an eight-year old girl who had a
6-month history of a rapidly growing facial
tumour. The lesion was benign but aggressively expansile osteobroma located within
her midface. The tumour had obliterated her
nose and stretched outwards (Fig36.1). At
the same time, her eye sockets were propelled forwards and sideways, causing
visual problems (Fig. 36.1). She was still
able to eat, but the tumour had lled and
H. Nishikawa
Fig. 36.1 Samaya. Preoperative lateral view
stretched her entire nasal cavity so she was
no longer able to breathe through her nose.
Clearly, it was only a matter of time before
the tumour would start pushing her palate
downwards and obliterate her mouth. This
would mean certain death from starvation
and as a terminal event asphyxiation. CT
scans demonstrated that the tumour had not
yet eroded through the skull base and into
the brain.
2. At a pre-operative meeting, the entire team
discussed whether it was right to treat
Sumaya, given the risks of the operation.
There were signicant surgical and anaesthetic uncertainties about surviving the operative removal of such a gigantic facial mass.
No one on the team had ever encountered
such pathology. Based on close inspection of
the scans, the tumour appeared resectable.
However, it was uncertain whether resection
would result in a cure or only in palliation. It
was also clear that the operation would still
leave the patient very disgured. As a group,
the team decided on the basis of the skill mix
available that surgery was justiable as it
was the only chance which Samaya had of a
prolonged life. The ethical issue of acceptance of the decreased quality of life was
explained but unlikely well understood by
the patient.
36 How to Approach Noma and Facial Infections, Trauma and Tumours Through Charity Missions: Ethics…
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3. A consent was obtained from her father. Via
a translator, we informed him that there was
a good chance that Samaya may succumb
from surgery, but without it, she would certainly die. He agreed, and he signed the consent with an X since he was illiterate.
4. The surgery involved the whole team and
took all day. The tumour was removed.
Limited facial and nasal reconstruction was
possible. Samaya made a surprisingly
uneventful post-operative recovery. After a
few days, haemostatic packs were removed
from a large residual midfacial dead space,
and patient was rehabilitated sufciently to
be discharged 1month later.
5. Evaluating Samaya’s treatment from the ethical point of view alone, we need to look at it
as sequential to the pillar of ethics. The rst
pillar leads us to the question: Did the treatment benet the patient? In medicine, benet
can be measured in several ways. The outcome of either life or death is a straightforward binary analysis and certainly operative
in this case. A more complex variable is to
measure the functional change provided by
Fig. 36.2 Early postoperative view
the procedure, and again this was benecial
for Samaya; she could now eat and breathe
better. The most difcult outcomes of all to
analyse objectively are aesthetic improvements and the change in the quality of life
after surgery as evaluated not only by society
but especially by the patient. All these elements must be understood by the patient or
their surrogate when signing the consent for
the operation.
For Samaya, there was clearly a good outcome on several levels. Her life was saved.
Functionally, she was better regarding her
airways and feeding ability, and even her
vision improved as her tumour no longer
obstructed her midface, nose or eyes.
She remained facially deformed
(Figs. 36.2 and 36.3). She had been converted from extreme to just major hypertelorism. Her nose was released from the
depths of her tumour and was just recognised
as a nose. She will still need some major surgical interventions to improve her features
cosmetically. Did the team improve the quality of her life? Arguably yes. We saved her so
that she could go back to her life of begging,
and at the age of 8, she could continue to support her family.
6. The team’s satisfaction with the outcome of
this case emphasises the cultural and economic chasm between the wealthy, mostly
Western, world that the team came from and
the reality found in the underserved low- and
middle-income countries (LMICs) that the
team and others are trying to help. The
benchmarks and the frame of reference of
doing good become less certain.
A specic lesson drawn from the previous
case is that the concept of a good aesthetic
outcome for most of the treated patients from
LMIC’s rural areas wish and espect to have a
fully normal appearance is unrealistic. This
would be appreciated and understood to be
an impossibility in the extraordinarily
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Fig. 36.3 Samaya 1month after her operation with her
friend with a large tumour of the jaw waiting for surgery
difcult cases like noma or the case described
here of a huge facial tumour by most patients
from a wealthy country. Unfortunately, from
the perspective of the rural Ethiopian or other
LMICs’ patients, it is likely that the aesthetic
outcome was disappointing for many of the
major noma and other facial or contracture
release operations carried out over the years
despite some denitive functional improvements. For these patients, the concept of
reconstructive surgery generally remains
alien as they frequently don’t appreciate the
advanced treatments that many receive.
7. The importance and the complexities presented by the third pillar of medical ethics
encountered in LMICs, which revolve around
the right of the patient to make informed
decision about whether to go ahead with
their treatment, are especially challenging
when majority of patients are uneducated
H. Nishikawa
and frequently illiterate and have no access
to the Internet. Angell has written: “There
must be a core of human rights that we would
wish to see honoured universally, despite
variations in their supercial aspects …The
forces of local custom or local law cannot
justify abuses of certain fundamental rights,
and the right of self-determination on which
the doctrine of informed consent is based, is
one of them” [3].
Ethical treatment must of course be universal. Doctor knows best is a mantra rightly
questioned. In Ethiopia and in other LMICs,
trust in the infallibility of the surgeon still
prevails as probably also extends to the local
“traditional” doctors who treat illnesses
based upon non-Western and often nonscientic, traditional techniques. In Ethiopia,
there are over 100 different tribal languages;
the high number of tribal languages is true in
many other African countries. No single
translator will be able to communicate
clearly with all the patients that visiting
teams or individuals propose to treat. Often,
the consent is conveyed by a chain of interpreters. It is certainly not ethical to decide
what is best for an adult without their
informed consent or to carry out treatment in
good faith alone, except for emergent, life/
death situations. However, this inevitably
and unknowingly occurs as a result of “something lost in translation” during the intense
and time-restricted urgency of an operation.
8. Samaya’s case raises some issues concerning
the fourth pillar of ethics, i.e., justice. Was
her treatment compatible with her legal
rights? Was it fair to treat her ahead of other
patients waiting to be treated by the team?
Was it justied for the team to use all the
team’s resource for the whole day for one
case when several other deserving patients
could have beneted from the available time,
personnel and resources? There are some
parallels between the delivery of national
healthcare in the UK and the strategy Facing
Africa employs. The system of preassessment and follow-up is an acknowledgement that for many of these difcult,
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459
chronic conditions, single x solutions are
often not possible. However, for surgical specialty teams, the presence of expertise is
never continuous. Even though videoconferencing and instant communications are used,
in reality, specialty teams can only deliver
intense missions a few times per year. It is for
this reason that training of local personnel
must remain a priority for the visiting specialty teams, and this is almost an ethical
obligation that is difcult, and sometimes
impossible, to full by all NGOs.
9. Utilitarianism principles for the greater good
with the delivery of justice for as many
deserving patients as possible is just not
applicable to specialty teams. National
healthcare systems ideally have the capability of treating all the medical conditions that
confront a population. The system with fewer
resources must resort to greater rationing.
For specialty missions, the rationing, by
necessity, has to be quite stark and in many
ways brutal. This is because the constraints
were created by the principles of the specialty team’s aims and the target pathology
that it funds. The constraints are partially justied in some cases by providing adequate
training to qualied personnel, if such personnel exists. Most of the large number of
patients that the Facing Africa encounter on
the rst day of its mission do not achieve
“justice”. Many have journeyed hundreds of
miles to gain access for a few eeting minutes to gain access to expertise. The lucky
few are treated. The doctors of the visiting
team have to employ the “bully” principle of
treatment, which selects only those patients
who are winners. The surgery must be successful, and there should be complete recovery within the time span available to the
mission. If these aims are not achieved, harm
is done, unless local teams are taught sufciently to take over the care. The initial process is often heartbreaking.
The other arm of justice related to healthcare is that it must have a system of selfperpetuation in order to treat future patients.
This involves training surgeons, anaesthetists
and nurses. Facing Africa only recruit experienced and dedicated experts. Trainees that
come are sponsored separately by the
regional or central government health system
with support from the hospital. Replacement
of expertise should ideally be aimed at local
doctors. In many cases, such as Facing
Africa, very few Ethiopian surgeons have
beneted in terms of application to their own
practices from what could have been learnt
from these missions, and there has been a
relative lack of long-term engagement of
national surgeons. In reality, the participation
of local surgeons in super-specialty training
and participation such as Facing Africa is not
the fault of the local doctors but is a reection of a critical lack of resources. The treatment of complex conditions is probably
unattainable for most healthcare systems in
LMICs except for the rich minority, which
usually seeks care abroad. Therefore because
there is no resource to manage some of these
really difcult problems, the incentive to do
so for local clinicians is severely tested. It
can only be achieved by close collaboration
of the specialty teams and local healthcare
providers and the support and active involvement of the federal government, with support
and pressure from the public and interested
international funding foundations and
agencies.
10. The aim of all the ethical pillars discussed so
far is to prevent harm. The second pillar of
“Do no harm” is not frequently discussed
because it is so self-evident in most circumstances. It is sometimes not quite so clear
when specialty missions or even wellmeaning individual assistance is provided. If
doctors take on patients, however deserving,
who are beyond their capability to treat,
harm will inevitably be done. Unfortunately,
distant shores can make some immature and
arrogant visiting clinicians braver and more
adventurous because subconsciously they
feel that it is better to do something, than to
do nothing, and they may feel that they are
beyond the reach of local clinical governance. Any mission, individual or team, that
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H. Nishikawa
becomes a surgical playground is destructive
and potentially lethal. It behoves individual
volunteers to be, and the teams to select, the
most experienced and compassionate clinicians who understand their own limitations
and the aims of their participation in this volunteerism. In this way, individual volunteers
and specialty teams can provide eeting episodes of excellence and at best inuence and
inspire local doctors and governments to
make appropriate changes to improve their
own healthcare systems.
Conclusion
These ethical pillars are guidelines. They should
be non-negotiable, but in reality, the.
intrinsic stresses of specialty missions may
lead to some inevitable ethical distortions.
However, individual volunteers and members
of surgical specialty teams must aim to provide
the same quality of planning and care as they
would in their countries of origin. All patients,
no matter where they are on the planet, deserve
this.
References
1. Gillon R.Medical ethics: four principles plus attention
to scope. BMJ. 1994;309:184.
2. Beauchamp TL, Childress JF.Principles of bioethics.
7th ed. Oxford University Press; 2013.
3. Angell M. Ethical imperialism? Ethics in interna-
tional collaborative clinical research. N Engl J Med.
1988;19(16):1081–3.
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Infections, Trauma andTumours
Through Charity Missions: Noma–
ANeglected Disease
AlexanderJ.Rickart andGrahamMerrick
Abbreviations
FA Facing Africa
NTDs Neglected tropical diseases
WHO World Health Organization
Aetiology andEpidemiology
Aptly described as the face of poverty, noma rapidly progresses from oral ulceration to oro-facial
gangrene (Fig. 37.1) [1, 2]. An opportunistic
infection with a name derived from the Greek
term meaning ‘to devour’, the disease aggressively spreads through the hard and soft tissues.
With a mortality rate thought to be as high as
90% and with so few able to access treatment in
its active phase, very little is understood about
the disease. Most commonly affecting children
under the age of 6, the World Health Organization
(WHO) estimates a worldwide incidence of
140,000 new cases a year [3, 4]. Predominantly
reported in sub-Saharan countries in a belt run-
37
A. J. Rickart (*)
Department of Oral and Maxillofacial Surgery, Great
Ormond Street NHS Foundation Trust, London, UK
e-mail: alexander.rickart@nhs.net
G. Merrick
Department of Oral and Maxillofacial Surgery,
Taunton and Somerset NHS Foundation Trust,
Taunton, UK
© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023
M. A. Hardy, B. R. Hochman (eds.), Global Surgery,
Fig. 37.1 A three-year old girl with acute noma; this
image encapsulates why the term ‘the face of poverty’ is
so tting. The destructive and aggressive nature of the disease is clearly seen alongside the hallmarks of protein
energy malnutrition
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