Transcript FULL-TEXTX - Manchester eScholar

Dr Simona Giordano
Reader in Bioethics
CSEP The School of Law
The University of Manchester
 1.
Which among the many medical
treatments for gender dysphoria are ethically
legitimate, and should be paid for by the NHS
or reimbursed under insurance schemes?
 2. How can or should the patient’s interests
be assessed?
 3. Can clinical guidelines help to resolve the
above problems, and more broadly help to
assess patients’ best interests?
 This
proposed here is a philosophical
analysis. Although the clinical aspects of
gender care are relevant, this will not be
clinical analysis or an economical analysis
based on QALYs or any other measure
 In order to begin to answer the questions
posed earlier, we need to reflect on certain
assumptions around medicine, which are
commonly made
 Many
people would agree that medicine and
doctors should treat illnesses (or people with
illnesses)
 Based on this assumption, it can be claimed
that those who want medical treatment may
have an entitlement to that treatment if
they suffer from an illness
 If they do not suffer from an illness, they
may still obtain that medical treatment, but
usually they would have to pay for it.
 Proposition
P1: The (primary) aim of
medicine is treat illnesses (or people with
illnesses)

P
P1r [revised]: One of the legitimate aims of
medicine is to treat illnesses (or people with
illnesses) [more precise version of P1]
1
I1: people with illnesses have a
prima facie legitimate claim to medical
treatment
P 1
I2: people without an illness have
less of a legitimate claim to medical
treatment (or no claim at all)
Not in patient’s
interests
In patient’s interests
Not given
Offered
Paid by the
individual to
“speed up” things
Paid by the state
in some cases e.i
fertility
treatment
Paid by the state if
individual affected
by “illness”
Paid by the
individual if
individual not
affected by illness



A distinction is usually accepted in clinical practice
between procedures that are therapeutic and those
that are not
This distinction has a further normative implication:
a patient is usually, prima facie, entitled to a
procedure (probably under the NHS or insurance
schemes) if that procedure is regarded as therapeutic
For example, a patient may be entitled to breast
reconstruction if she has had mastectomy as a part of
cancer treatment. If a patient wants breast
reconstruction because she has a preference for
bigger breasts – or because she suffers because of her
unusual breasts size, usually she will not be
“entitled” to the procedure - she is usually regarded
not to have a right to it, and not entitled to it
through the NHS
 P2:
medical procedures can be distinguished
in therapeutic and non-therapeutic
(cosmetic or enhancing).
 P2
I3: people have a legitimate claim
to publicly funded therapeutic procedures
 P2
I4: people have less of a
legitimate claim (or no claim at all) to
publicly funded non-therapeutic
(cosmetic/enhancing) procedures
 The
distinction between therapeutic and
non-therapeutic conditions is based on the
underlying condition and not on the
outcome
 Even if both patients in the example above
suffered in the same way from their breast
appearance, and had the same positive
outcome after surgery only the patient who
has a recognised pathology will usually
obtain publicly funded treatment. The other
patient’s claim may still be fulfilled, but she
will not normally be regarded as “having a
right” to the procedure.
 So:
is transgenderism/transsexualism/gender
dysphoria an illness? If it is an illness, then
patients will be entitled at least to some
medical and surgical care under the NHS or
insurance schemes (if resources are
available); if it is not an illness then a claim
becomes more difficult.

But how can we determine whether
transgenderism is an illness? (it being included in
the ICD isn’t really a valid answer…)



In order to answer this question, we need to know
how to differentiate between illnesses and nonillnesses. This type of question is epistemological in
nature
In order to say whether a being is an animal or a
vegetable, we need to have agreed on what it is that
makes a being an animal and what it is that makes a
being a vegetable. Or we have at least to have an
agreed definition of the traits, even if we accept that
they are arbitrary, by which beings are defined as
part of the vegetable or of the animal world
By the same coin, in order to assess whether
transgenderism is illness, we need to have an idea of
what it is that differentiates illness from non illness.
 There
is no way as a matter of fact to
determine which conditions are illnesses.
The epistemological question of what is an
illness has raised considerable debate in
philosophy and medical ethics. There have
been various attempts to define it.
 Defining
illness in this way has a problem: it
raises the question of what health is. Usually
health is defined in terms of wellbeing, or
absence of disease or illness. Health and
illness are thus defined in a circular manner
in relation to one another
 So, definition 1 has a logical problem of
circularity: it is tautological.
This definition is also full of problems. How do
we define what is typical functioning for our
species? Mozart had musical talents that were
not typical, but he was not “ill” because of
them. Athletes don’t function in a typical way,
and so many artists and dancers, but they are
not for that reason “ill”.
 Moreover, there are a lot of conditions that are
typical functioning for the human species and
which are regarded nonetheless as illnesses:
osteoporosis in post menopausal women, just to
give an example. Cancer developments are
increasingly typical and yet they are treated as
illnesses. These and many others we treat as
illnesses even if they are typical for our species.

 Still
dissatisfactory: what happens to the
majority of people isn’t an indication of
health
 For ex the majority of adults in in
industrialised countries is shortsighted: the
fact that the majority of people have myopia
does not mean that myopia is healthy sight
 Basketball players vary from the norm in
their height: they are not for this ill. Many
more examples could be provided.
“Illnesses” are variations by defect from a
statistical norm/average. So you have to have
“less” of something in order to be classified as
“ill”
 This revised definition is still dissatisfactory.
Having less of something is not by everyone
regarded as an illness
 Disability Right Activists have long argued for
this. Many in the deaf community contend that
being deaf is not only not an illness but even an
advantaged state. Some have tried to conceive a
deaf child using embryos of people deaf from
generations, to have a better chance of giving
birth to a deaf child, because they consider
deafness as an advantaged state.

 Could
we then say that there is no such a
thing as an illness? That all states are just
differences?
 But now imagine this:
 Imagine that you, if you are a woman, or
your partner if you are a man, are in theatre
giving birth.
Baby is doing great. By the
way in the course of delivery
I have accidentally deafened
your baby, but you need not
to worry, because hearing
and not hearing are just
different abilities, being
deaf isn’t any illness, so you
need not to worry about this!
 What
this all tells us is that the definition of
illness is not factual, but axyological. It is
about what we, in a certain society and at a
certain point in time, or in a certain social
group, or simply as individuals, believe a
good human life to be
 It is also “normative”: when we “judge”
others, and say whether “they” have an
illness or not, we are expressing our view of
how humans “should be” or what they
“should have” in order to be “healthy” or
“normal”




What does this have to do with transgender care?
Everything: if this is persuasive, this means that the
distinction laid above between therapeutic and nontherapeutic interventions collapses
It means we cannot morally justify providing breast
reconstruction to a transgender person because
gender dysphoria is classified an illness and refusing
it to another woman because what she suffers from is
not classified as an illness
It also means we cannot justify, morally, drawing a
list of medical interventions based on whether they
are really therapeutic or cosmetic (we cannot, for
example, morally, say that genital surgery is to be
provided because it is therapeutic but, say, facial
hair removal should be paid for privately because it is
cosmetic)
BBC News, 25 June 2015. The girl without
the nose
“A 3D printer is to be used in ground-breaking
surgery on a two-year-old girl. Tessa Evans was
born with an extremely rare medical condition
that means she has no nose or sense of smell.
The surgery will involve a mould being inserted
into Tessa's face to stretch her skin, and slowly
build the cosmetic implant”








The news circulated all across the media
There was no question that a surgical team with the valid consent of
both parents would reconstruct her nose
Is the reconstruction of her nose cosmetic or therapeutic? The girl was
healthy the way she was. The surgery is made solely to normalise her
appearance, and so, for cosmetic purposes
One may argue that she would be likely to suffer psychological issues if
she were not treated
But so can many other consenting adults who come to see you
To make a more extreme example, so suffer women who do not receive
genital mutilation: they may be ostracised by their social group; yet
female genital mutilation is a crime now in England and many other
countries, even for adult consenting women
Why can’t a woman request a surgery on her vagina that will allow her to
have a normal life in her social group, but surgery can be performed
without consent on a otherwise healthy girl just to normalise her facial
appearance?
One may respond: because the adult consenting woman under social
pressure is not giving valid consent to genital mutilation. But neither the
2 year old girl is…



So, if the surgery for Tessa is meant to normalise her
appearance and prevent psychological issues caused
by others, then it should perhaps be regarded as
“cosmetic”; but if so, why is it regarded as
uncontroversial? Why is it paid by the NHS?
Shouldn’t both parents and medics here be liable in
bodily assault? Why not wait till the girl can decide
for herself? Why subject her to invasive surgery with
all risks associated with it only to ameliorate her
appearance? Why is this different from skin bleaching
or nose filing of black young children to integrate
them better in a white dominated society?
Let us think about other cases (closer to our
transgender patients issues)
 It
has been common practice to “normalise”
children born with intersex conditions – but is
this really therapeutic intervention, or nontherapeutic, cosmetic intervention?
 Though some intersex conditions are
associated with pathology (for example,
where tissue is likely to grow into neoplasia)
there is strictly speaking no medical need
for surgery of the ambiguous genitalia
 A child’s genitals are “corrected” for social
reasons, based on normative ideas relating to
what “a normal child” should look like.




Is bat ear surgery therapeutic or not? It is provided to
children under the NHS in England
And whereas I could not persuade any local authority
in England to give me breast enlargement, just
because this is how I was born, if I looked exactly the
same as I look today because of an accident or
illness, I would probably obtain breast enlargement
The list could continue but the point should be clear
The line between therapeutic and cosmetic
procedures is very blurred and arbitrary. To say
therapeutic are those procedures that cure illnesses
and cosmetic are those that do not is circular and reposes the problem at a different epistemological
level.
 So:
how do we resolve the
conundrum? How do we
decide which treatments are
morally, clinically and
legally legitimate, and
should be paid for by the
NHS?
 Is
to question the propositions. Maybe
medicine should not aim at treating
illnesses…
P
3: Medical treatment is clinically and
ethically justified if the person is at
significant risk of psychological or physical
harm unless the treatment is provided.
P
3V: Medicine should aim primarily at
minimising suffering (not at treating
illnesses)*

*because we do not know and it may be
epistemologically impossible to determine which
conditions of suffering are ‘illnesses’.
 …but
…
how about if I suffer significant
psychological harm because I am, say,
ageing? Maybe I am so used to my fab beauty
that my social and personal life suffer from
my ageing so much that I begin to be
depressed, suffer anxiety and a lot of other
mental health issues as I age.
 Does this entitle me to NHS funded beauty
treatments?



Really should patients (clients?) decide? What is the
normative weight of our “wants”?
How much do I have to suffer before my suffering entitles
me to medical treatment?
What if I told you that I couldn’t live with my enormous
nose, or with my asymmetrical breasts, or my big post
partum belly?
 P3
and P3V do not answer the above
questions
 Moreover, if P3 and P3V are true, that may
also imply that doctors and the NHS have a
duty to distribute drugs to troubled teens on
Friday Nights in Manchester to minimise their
existential suffering.
 Am I making a case for this? (Maybe I should)
 These
difficulties are probably the reason
why transgender groups, usually quite
vociferous about their human right to
equality and diversity, have never seriously
questioned the classification of gender
dysphoria as an illness
 They have apparently passively accepted
being classified as ill because the stakes are
high: if their right to identity, diversity and
equality are fully recognised, they risk losing
their right to healthcare (they may still get
healthcare but not as a right and probably
not as publicly funded).
 So:
how do we decide? Right to equality and
diversity, or right to medical treatment?
 Which interventions, if any at all, are
ethical, clinically appropriate, and should be
publicly funded?
 Well now I am going to reveal the answer.
 There
is no way to resolve these problems
because there is no easy way to answer the
fundamental epistemological questions
relating to what an illness is and what health
is
 Even if there was a way of answering a
fundamental epistemological question, that
wouldn’t necessarily resolve other ethical
issues relating to how to ration scarce
resources.




So we need to move tentatively based on the knowledge
we have acquired and good sense we may have (being
careful to regard this as knowledge and expertise rather
than “evidence” – what we know about gender care is
open to challenge and change)
This can be called “epistemic warranty”: it means “what
we have a reason to believe, based on what we know so
far”
For ex. we know that many people with strong and
persistent gender dysphoria suffer terribly unless they
receive some medical treatment; we know that suicidal
ideation is extremely high in untreated transgender people
and that it goes down to virtually zero after treatment is
provided
There isn’t comparable documentation that people who,
say, want to look feline, have the same degree of suicidal
ideation of transgender people


There is also strong indication of extremely poor
psychosocial adaptation prior to medical treatment
for transgenderism, and documentation of significant
increase in body satisfaction and psychological
adaptation post treatment.
Data/empirical knowledge of this kind are not
available for other categories of patients. Maybe it is
not available because it has not been collected
systematically, and once it is collected maybe we
need to rethink the way we proceed today. But the
very fact that it has not been collected
systematically may mean that nobody in the clinical
community or among patients has felt that there was
a comparable urgency of gathering it.



Moreover, gender is a very important segment of
personal identity: it may be so for biological, social
reasons or a combination of the two
Some studies indicate that the gender identity not
only of gender conforming people, but also of
transgender people, has a biological component and
is therefore innate; there is thus often no other way
of helping people with strong and persistent gender
dysphoria, other than providing medical treatment to
align their body to the perceived identity
Gender is usually acquired early (and according to
some studies it is at least to some extent
“hardwired” in us), resilient, and experienced as
much more indicative of one’s identity, than, say, size
of the nose, height, or hair colour. Even less
belonging to the feline race.
 This
all gives us reasons to regard medical
treatment for gender issues as not only
legitimate, but also usually more urgent than
similar medical treatment for other
conditions of discomfort or suffering
 But
ultimately, where we draw the line
between interventions that are clinically and
ethically justified and interventions that are
not is a matter of expertise, collected
knowledge about the nature of a problem,
and intuition
 How could doctors be sure that the man who
has suffered burns in a fire has a stronger
claim than the transgender woman who has
stubble poking through her face?



Also, and importantly, how can doctors know the real
nature of the patient’s predicaments? How much people
suffer from their predicaments is a function of many
different factors, including how they themselves
experience their life, their resilience, their optimism, the
way they have been treated by life and by significant
others, and so on.
How can they know whether their patient will really be
happier after treatment? How much satisfaction will
increase is also impossible to predict with accuracy.
Collected data may count to nothing when it comes to the
individual person – because that individual person is likely
to be different from all others
There is thus no objective criterion to make decisions,
because there is no fool proof method for understanding
others – our epistemic warranty is all we have – what we
have reason to believe
 Another
alternative is to assign each person a
life budget and they decide how to spend it,
(proposal that has been made in the UK in
recent years).
 The
problem with the budget is that people
are often bad judges of their own interests
and need medical expertise and guidance
 Moreover, in the “budget” system, doctors
become “clients” of their patients. Is this a
desirable scenario? To be discussed…
 Another
solution could be to gather a
consensus of experts: this is what usually
happens (WPATH, Endocrine Society US etc.)
 But there is an issue of who should be
considered as “the experts” here: perhaps
the consensus should be by the users, by the
patients themselves?
 At least they should be involved: what should
be the relative weight of healthcare
professionals and patient in framing
guidelines?
Guidelines may be useful tools framed around
expertise and collected knowledge
 However, guidelines will not be able to tell
doctors what is in the best interests in
individual cases
 In other words, you may agree that in the
majority of cases, say, mastectomy for transmen
is highly important, that is usually better
performed after X months of hormonal
treatment
 You may even agree that mastectomy should be
publicly funded (if there are funds…)
 However, you will not be sure that mastectomy
will produce the desired outcome in each
individual case

 Thus
in order to make good use of the
guidelines you need to regard these as
flexible and approximate. They may be
another piece for your epistemic warranty,
but you need to be open to the possibility
that those guidelines may not help you in
individual cases, and that in individual cases
best interests are best served by departing
from the guidelines
 Medical
doctors need to make decisions that
affect the life of others irreversibly
 Of course they are not alone in these
decisions: these decisions are ultimately
made by patients
 Yet many doctors understandably would like
to have a criterion based on which to make a
“good” decision
 However, medicine is and remain a practice
dealing with human beings, highly
unpredictable animals, whose functioning is
far from well understood
 Gender
treatment is decided on the basis of
a huge leap of imagination, of a prediction of
what life will be afterwards. There is an
inherent paradox to this prediction, and a
wide margin for variation between outcome
and prediction, and even for mistake (either
on the part of the patient, or of the doctor,
or both). This is inescapable.
Guidelines are useful tools to direct clinical
practice, to create a standard of care and to
assess and direct patients’ expectations
 However, they should not be mistaken as “truth”
 Also: guidelines are not the law and should not
be legally binding – this must be openly
recognised: doctors should be left with
discretion over individual patients
 Doctors should not live in fear of deviating from
guidelines: they must continue to use their
clinical judgement and act in what appears to be
the best interests of the individual patient, and
not stop doing so in deference to the guidelines
or for fear of professional repercussions

 Gender
medicine, perhaps more than other
areas of medical practice, challenges us to
reconsider the very nature of medicine
 Medicine does not “cure illnesses”; its role is
much vaster than this and much less clearly
defined that many would hope
 Doctors cannot wait until epistemological
issues relating to what an illness is before
they intervene
 Likewise, doctors or policy makers should not
“manufacture” illness so that they feel
“safe” in providing medical care
Medicine is not an exact science, it is not
geometry and we should not apply consensus
statements or guidelines in the way we apply an
equation to resolve a puzzle
 We have moved from a conception of medicine
that sees the doctor as a “technician” that
treats the illness (who intervenes on a leg) to
one in which the doctor is a professional who
deals with human beings
 Patients are no longer numbers, are no longer
referred to as “the appendix in bed 5”. They are
recognised as people, with feelings, histories,
values and unique needs

 We
cannot have it both ways: if we recognise
that patients are people, unique and
valuable in their uniqueness, we cannot
pretend to have “The Protocol” which will
give us straight and unequivocal answers
 We have to accept the uncertainties that
come from the unique therapeutic
relationship that we will establish with each
individual patient.
 There
is thus no way of being sure of what
the patient wants or needs; no way of being
sure that what you offer as doctors will
procure the desired end. No even way of
being sure the desired ends are clear either
to you or to the patients.
 There is ample margin for error, and there
should be ample margin for discretion within
well defined standards of care.
 The
apparatus of medicine usually holds
itself on the idea that illnesses or people
with illnesses have a legitimate claim to
medical treatment, possibly to NHS funded
treatment
 But gender care challenges this idea:
transgender people apply for the same
treatment as other people (breast
enlargements, laser hair removal, hair
transplants) – why should these be provided
to transgender people but not to other
people in distress over their look?
 And
those other treatments that are
different, and very invasive (vaginoplasty,
phalloplasty, pitch voice surgery, facial
filing), should they be provided at all? After
all, who says that transgenderism is an
illness?
 We have seen that there is no straight
answer to these questions
 There is no answer because the fundamental
epistemological question as to what
constitutes an illness does not have any
straightforward answer.
 Thus
there are many ways in which it could
be decided what treatments will be
provided; all of these are arbitrary (tossing a
coin, assigning a budget, treating first those
who are more likely to benefit for longer –
that is on some kind of cost benefit analysis)
 Another way is drawing guidelines and a
consensus statement.






Having guidelines is helpful. It helps to collect
available knowledge, to draw preliminary conclusions
from it
Guidelines give a direction to doctors, especially
junior doctors
Give patients a sense of what they can expect
Can help making it clear to the public what
treatments will be publicly funded, which may be
only partly subsidised and which will have to be paid
for privately
May add transparency to the rationing process, by
explaining how and why certain decisions are taken
May bridge the gap between doctors and users,
especially if users are involved in the process






Doctors should be clear as to the limits of clinical
guidelines
They do not remove the fundamental epistemological
problem
They will not tell you what is in your patient’s best
interests: you and your patient will have to figure
that out each time
They will not remove the margin of “guesswork” that
both you and your patient need to make
They should contain a clear statement that guidelines
do not have the force of law
Most importantly, they should remain a flexible
instrument for establishing expected standards of
care, and not a straightjacket to good clinical
practice