Beyond “Right” And “Wrong”: Plenary presentation by Sarah Barclay to the 5th International Conference on Paediatric Palliative Care, Cardiff 2010:

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Beyond “Right” And “Wrong”: Plenary presentation to the 5th
International Conference on Paediatric Palliative Care, Cardiff 2010:
Sarah Barclay
Intro:
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thank you very much for inviting me to speak today. In this presentation I’m
going to talk about what happens when parents and medical teams disagree
about what is in the best interests of a child. About some of the reasons why
these disagreements might occur, about the impact they have on everyone
involved and on what might be done to resolve them.
I’ll be talking about some of the high profile “withdrawal of life sustaining
treatment” cases of recent years which have ended up in court and looking at
mediation as a less confrontational way of helping resolve some of these
cases in future.
Some of you will have heard of mediation but others won’t. It’s often used as
an alternative to court, in employment disputes or as a stepping stone on the
way to a divorce.
The kind of mediation I’m going to talk about today is different . Medical
Mediation is aimed at providing an independent and impartial forum for
medical teams and parents to discuss complex and emotive disagreements
based on differences of ethics or values.
How far should doctors go to prolong the life of a child for whom no cure is
available? When should intensive treatment stop and the palliative pathway
begin? How does faith fit into the equation? How do we weigh up the burdens
and benefits of treatment?
What made me start thinking about the relationships between doctors and
parents and the sorts of things which might cause them to disagree, was the
16 years I spent as a medical correspondent for the BBC. Most of it as a
reporter on the Panorama programme.
It was my experience of working on medical stories involving complex ethical
issues related to children which opened my eyes to some of the things which
led to disagreements between doctors and parents and led to where I am
now:
which is to believe strongly that providing an impartial, independent and
facilitative forum in which medical teams and parents can talk about difficult
medical and ethical issues, may cause less long term damage in some cases
than going to court.

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What sort of ethical dilemmas are we talking about?
Advances in neonatal intensive care, in ventilation and other life support and
life sustaining treatments mean that babies and children who might once
have died can now be kept alive, not just for months, but for many years.
What does that mean for their parents and for the healthcare professionals
who care for them?
• It means there may be far more choices and decisions to be made
about the burdens and benefits of treatment:
• It means that deciding when to start and when to stop intensive and
invasive care will involve more complex ethical questions which may
evoke strongly differing views between clinicians and parents.
• It means that, whether we like to discuss it in these terms or not, the
question of the equitable use of scare resources will continue to have
an impact on the process by which such decisions and choices are
made.
• It means that the boundaries of hope and expectation will continue to
be pushed forward.
• And it means that deciding how far to go in trying to prolong the life of a
child for whom no cure is possible, is – at times - as much a matter of
choice and deeply held values and ethical beliefs as it is a matter of
medical expertise.
An example from “Panorama”
As an example of the kind of difficult medical decisions I’m talking about I’d
like to show you a short clip from a film I made for Panorama a few years ago
which was based on research into the development of premature babies born
at or below 25 weeks gestation – in other words, at the limits of viability.
The scene involves the decision-making process leading up to the withdrawal
of intensive care for a baby born at 25 weeks. I should say that it was the
parents’ wish that this scene be included in the film and that they were shown
it before agreeing that it should be broadcast.
Miracle baby clip here (dur: 5 mins)
This is a scenario which is no longer unusual in the field of paediatric
medicine.
The difficult decision-making is about not only when to start the process of
saving life but also when - and why - to stop. And for parents in particular,
this presents even more agonizing dilemmas because with each medical
advance, the boundaries and definitions of hope seem to advance too.
The point at which clinicians believe there is no longer benefit to be gained

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from continuing to treat intensively (as we saw in the clip from the film) may
not be the point at which a parent is ready to stop hoping – perhaps against
their better judgment – for a miracle. In that sense, hope is the one thing they
can cling to when other certainties have vanished.
I’m sure most of you are no strangers to the business of making difficult
decisions and that you do everything possible to make sure they are taken
collectively rather than confrontationally.
Most of you will not , I hope, have found yourselves on the front pages of a
national newspaper – probably described as Dr A or Dr B – accused of
wanting to let a child die who should be given a chance to live – with the story
of that agonising decision-making process dissected for the world to see. And
to judge.
In one of the cases I’m going to talk about, I was one of the journalists
involved. One of the doctors involved in the case is here too and we’re going
to talk about the impact this case had on him, both professionally and
personally because it’s a very powerful example of both the causes and the
impact of conflict in medicine.
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As time went on, I began to think about what was going on behind the scenes
of these complex stories – what had made doctors and parents disagree?
What effect was this having on the decisions which were being made about
the medical care of the child involved? Could anything have been done to
prevent these arguments getting to the point where journalists had become
involved and the stories of what were essential private tragedies, had found
themselves in the public domain, told by people like me?
The fact that I was there at all meant that whatever efforts had been made to
resolve the disagreements had probably failed. The decision-making process
was now in the public domain. Often I felt very uncomfortable being in a
position of having to “dig deep” as it were, into the anguish felt by parents.
And questioning the intentions and actions of doctors whose only motivation
was to do no harm.
On many occasions, parents told me that subjecting themselves and their
private tragedy to the extraordinary public scrutiny of a programme like
Panorama was the last thing they could ever have imagined doing. But, they
said, they felt they had no other option. They turned to the media because
they didn’t feel, rightly or wrongly, there was anywhere else to go.
Sometimes, it seems to me, they just wanted to be able to “tell their story.”
And they wanted someone to listen, and more importantly, to hear, what they
wanted to say . Of course one of the reasons why they turned to the media
was that they hoped we would succeed in getting what they wanted where
before, they had failed. But it was more than that.
Why did they think no-one was listening to their point of view or that even if
they were listening, that they hadn’t been heard?

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What triggers conflict:
We don’t perhaps think of conflict as being something which could be
triggered by the way bad news is given or by the effect a particular word or
phrase might have on a desperate parent who finds themselves facing an
agonizing choice about a child who may only have a short term left to live.
But I think that conflict in medicine can be about just that – unleashing all
sorts of unintended consequences which could lead to a courtroom.
Poor communication, lack of time, different messages given to parents by
different members of a medical team, uncertainty of prognosis and the
overwhelming difficulty of deciding that the moment to let go has finally arrived
– all these things can result in a situation which , if unchecked, can escalate to
a point at which it is difficult to row backwards.
It’s interesting to see that new guidance from the General Medical Council ,
“Treatment and care towards the end of life”1 which came into force last
week, says doctors must :
“try to make sure that (parents) receive consistent, clear messages about their
child’s care or condition from different members of the healthcare team .” para
107
That, of course, may be easier said than done as you will all know too well.
Different teams, different shifts, changes in diagnosis and prognosis – all
these things are intrinsic parts of the business of medicine. In other words,
the message changes.
The challenge I’m sure you must face is how to deliver it to parents without
needlessly raising expectations or, indeed, destroying the hope which may be
keeping them going.
Let’s look at some specific cases in which disagreements between clinicians
and parents have become public confrontations because they have ended up
in court.
From hospital to courtroom
Sometimes a court is the only place in which such differences of view can be
decided but as those who have been called upon to make such decisions
have readily acknowledged, a court can be an imperfect place to rule on
questions which do not involve clear cut notions of right and wrong .
What is the court being asked to decide? In simple terms – if parents and
doctors cannot agree, they must decide what is in the best interests of that
child .
• The best interests test remains the subject of much debate among
doctors, lawyers and medical ethicists but very broadly it involves
1
Treatment and care towards the end of life, para 107: General Medical Council http://www.gmc-
uk.org/static/documents/content/End_of_life.pdf

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considering:
• How far it is reasonable to go to continue intensive treatment to prolong
the life of a child with a life limiting condition?
• What are the burdens and benefits involved in continuing to provide
treatment which cannot cure?
• At what point can continued intensive treatment be said to do more
harm than good?
What underpins all these cases are profound questions involving medical
ethics as well as law. Questions which are not about right or wrong but
about what, on balance, is the better or worse outcome in a situation where
there can be no winners or losers. Courts have to decide – that is what they
are being asked to do. But whether they can resolve cases involving
fundamental differences in ethical views, is another question.
I want to suggest that there is a process of escalation which, if intervention
can be made early enough, may prevent some of these cases from reaching
the point at which judges are– as one commentator puts it:
“given the appalling task of weighing up issues of immense sensitivity on
which they have received little training – medicine, parental love, ethics and
often religion”
(Marcel Berlins, Guardian 23.03.09 “Matters of life or death are a trial for
judges”
What is medical conflict?
So what does medical conflict look and feel like when it reaches the public
and legal domain?
“ Court Battle over hospital that wants to let baby die” – Times 26 Sep
2004
The case of Charlotte Wyatt was the subject of three court hearings between
the autumn of 2004 and February 2006 and received a huge amount of
publicity. The judge said the issues it raised were so important that the case
should be heard in open court. Charlotte’s parents waived their right to
anonymity and Charlotte herself was identified. The doctors responsible for
her care, were not. There was no suggestion that they had provided anything
other than excellent care.
Charlotte’s Story:
Charlotte was born three months prematurely in October 2003 weighing just
under a pound. She needed to be ventilated for most of the first three months
of her life, suffered serious infections, was believed to be blind and deaf and

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had suffered irreparable brain damage as well as damage to her lungs.
Her doctors believed it would not be in Charlotte’s best interests to be re-
ventilated if she deteriorated further because the treatment would involve a
tracheostomy - creating an airway through the neck into her lungs to help her
breathe. The doctors believed this very invasive treatment would subject
Charlotte to pain and distress with no chance of improving her health or
prolonging her life significantly.
Show headline: “I’m hoping for a miracle,” says Charlotte’s father.
Times 2 Oct 2004.
Her parents disagreed. They were both devout Christians and they weren’t
ready to stop hoping , literally, for a miracle. They said Charlotte responded
to their touch and to affection and wanted her doctors to ventilate her if she
suffered another relapse.
As parents and clinicians couldn’t agree, the hospital asked the High Court to
decide what was in Charlotte’s best interests. On October 7th 2004 the judge,
Mr Justice Hedley, ruled that it would not be in her best interests to ventilate
should she deteriorate but that instead, she should be allowed to die “in the
arms of those who love her most”
But that wasn’t the end of the story. Six months later, Charlotte’s parents went
back to court, saying that her condition had improved, that she’d begun
responding to external stimuli and that doctors should therefore be required to
ventilate her if she stopped breathing. They wanted the judge to reverse his
original decision. He refused but said the decision should be kept under
review.
The judgment makes clear that by this point, the conflict between Charlotte’s
parents and her doctors, had escalated dramatically.
“When Mr Wyatt attends (the hospital) he is accompanied at all times by
a member of the security staff”
“The staff are clearly very stressed both by the enormity of Charlotte’s
plight and the volatility (as they see it) of the parents. Positions have
inevitably hardened on both sides.”
Fourteen months later, Charlotte was still alive, her parents had separated
and her condition had worsened. At an emergency hearing the judge
confirmed his original decision – that Charlotte should not be ventilated.
Bring up quotes:
“I can really think of little that would be worse than for a child to be
intubated and die in the course of futile treatment, or, worse still, in the
course of futile treatment while futile legal proceedings were on foot.”
In his judgement , Mr Justice Hedley acknowledged that the publicity had
Show quotes “come at a price to those most closely involved in
Charlotte’s care, which , as all the expert evidence has been asserted,

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has been uniformly of the highest standard.”
Writing about the case of Charlotte Wyatt, Margot Brazier, an expert in
medical law, said that the
Show quotes “transformation of private tragedy to public spectacle was
disturbing , but as the judge noted, inevitable”
Five years later, it seems Charlotte Wyatt is still alive. From the little
information there has been in the public domain since, neither of her parents
has been able to take over responsibility for her care. Her life has been lived
in hospital or with foster parents.
In many ways this was a classic lose-lose situation; a fragmented family, six
figure costs for the hospital Trust and the tragedy played out in the public
arena.
The toll on Drs A, B , C and F - the doctors responsible for Charlotte’s
care, can only be guessed at. But the impact on them and the way it may
affect the decisions they make in future, is important to take into account
when looking at the effect of conflict in medicine.
Show headlines:
“Baby OT: Parents “deeply distressed” by court ruling to switch off life-
support for their boy.” – Telegraph 21 March 2009
“Baby OT: parents may sue hospital over right-to-die battle” (Telegraph,
March 23 2009
The case of OT reached the courts last year . It too, involved profound
disagreements between doctors and parents. It too, was a high profile case
conducted in open court but this time none of the parties were identified.
What it reveals is how a conflict can escalate over time. OT was born in May
2008 with a rare genetic disorder and had suffered serious brain damage and
respiratory failure. He was unable to breathe on his own and remained in
hospital, dependent on a ventilator and a feeding tube to keep him alive. It
was the unanimous view of the medical team responsible for his care that the
intensive treatment he was being given was causing him severe pain without
any chance of recovery or benefit.
They wanted to discontinue intensive care and allow him to die. OT’s parents
disagreed. Second opinions were obtained by the hospital which supported
the doctor’s view that it was not in OT’s interests to remain alive.
The hospital invited the parents to seek second opinions too. But the
disagreements continued and in January 2009, OT’s parents consulted their
lawyers. Two months later, his condition had deteriorated.
The hospital now made a formal and by now urgent application to the courts
asking them to rule that it would be lawful for doctors not to resucitate OT if he
suffered a cardiac or respiratory arrest. The application was granted. But
within the next few days, his condition deteriorated further. At a second court

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hearing, the judge gave permission for doctors to withdraw intensive care and
allow him to die.
The judge said:
“The evidence is that OT has minimal consciousness, is mostly asleep
but retains awareness of pain. Suctioning causes him extreme
discomfort and probably pain. Escalating medical treatment will not give
him any benefit.”
OT’s parents sought leave to appeal but were refused. The judgment
remained in place. Twenty four hours later, intensive care was withdrawn and
OT died.
Could this case have been kept out of court? Of course we can never know
for sure.
But one clue which emerges from the legal judgments is what can happen
when communication between parents and doctors breaks down over a
period of time without being resolved.
The judgment issued by the Appeal Court explaining why it was refusing to
allow OT’s parents to appeal reveals that :
“By about September 2008, (when OT was four months old) “conflicts
were emerging between the hospital and the parents as to the nature of
the interventions and treatments most in OT’s interest.”
Those conflicts continued over the next six months. Was there anything that
could have been done earlier which could have helped to resolve the
disagreements between themselves and the hospital?
The Appeal Court judgment states:
“we took the view that it had clearly been difficult for the hospital to
decide when the time had come to conclude that the developing issue
with the parents was incapable of consensual resolution and that the
assistance of the court would have to be invoked in its necessarily
confrontational format.”
The impact of what was clearly a very damaging conflict between parents
and clinicians comes through loud and clear in the Appeal Court judgment:
Reveal quotes: “The judge placed the father’s occasionally intimidating,
challenging and abusive conduct towards hospital staff into the context
of a level of distress on his part which it was hard to put into words.”
So why is it that some cases involving almost exactly the same difficult
decisions are resolved between clinicians and parents while others end up in
court? And what is the impact on doctors who find themselves at the centre of
a media storm?
The Story of Child B

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In a moment I’m going to ask Dr Simon Meller, a former paediatric cancer
specialist at the Royal Marsden Hospital in London to come and talk about a
case which he and I were very closely involved in. This case shows what can
happen when a medical conflict escalates to the point at which there seems to
be no way back.
Newspaper headlines: The Story of Child B took place 15 years ago and I
think it’s fair to say that for all those involved, this case has remained etched
on our memories ever since - not just because the disagreement between
parent and doctors was so intense but because Child B was such a fiercely
articulate and engaging advocate for her cause.
Her name was Jaymee Bowen and her case became a huge national and
international news story. She was suffering from leukaemia which had
relapsed. Her doctors, who included Dr Meller and his colleague Ross
Pinkerton at the Royal Marsden Hospital, believed that offering Jaymee
further intensive treatment – involving a second bone marrow transplant, was
not in her best interests because the chances of a cure were so small.
They believed palliative care was now the kindest way forward – because in
their view Jaymee had only a few weeks left to live. Jaymee’s father David
refused to accept this and took the NHS to court to try and get them to pay for
further, experimental treatment for Jaymee. They refused.
But was the story about money or what was in the best interests of a
desperately sick child? I was working for Panorama at the time and we were
allowed “behind the scenes” to tell the story of this case. Let’s watch the
opening of the film .
Mediation : an alternative solution
So is there another way? And how might it be used to help resolve
disagreements whose cause may be as much to do with breakdowns in
communication as about differences of ethical view?
Mediation is intended to resolve complex differences of view in a non-
adversarial way. It aims to acknowledge conflict, root out its causes and
provide a forum to try and see if the parties involved can resolve it. Here’s
one definition of mediation:
“A flexible process conducted confidentially in which a neutral person actively
assists the parties in working towards a negotiated agreement of a dispute or
difference, with the parties in ultimate control of the decision to settle and the
terms of resolution.”
What does that mean? I said at the beginning of this talk that I felt I’d often
been a sounding board for parents who believed no-one was listening to what
they had to say. Being listened to and more importantly, being heard, are vital
to keeping lines of communication open and avoiding the sort of damaging
conflicts we’ve been talking about here.
In her commentary about the Charlotte Wyatt case, Margot Brazier makes a
telling observation about the role of the judge in cases involving deeply held

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differences of ethical view:
Bring up quote: “The judge is in a sense undertaking in part the role of
mediator. Some of what he is asked to do resembles the function more
usually accorded to that of hospital clinical ethics committees. Yet as a
mediator he cannot command total confidence because ultimately he
decides.”
Well the key to mediation of any kind is that mediators do not decide. Instead,
they have been trained to listen, to reflect back what each party has said,
individually or to each other and to summarize points of agreement and
disagreement.
By listening I don’t mean that a mediator will sit back and let the discussion
roll over their heads without playing any part in it. They observe every part of
the conversation taking place in front of them – as well as watching and
listening to how it is being said and what the body language or facial
expression of the person speaking might be revealing.
It’s a very active kind of listening. And it’s aimed, above all, at giving those
involved, the time and space to – “tell their story” and to really hear, perhaps
for the first time, what the other parties have to say. The mediator acts as a
conflict absorber and their impartiality is paramount.
Mediation can involve families, religious advisers and others who may be
important to helping resolve underlying differences of opinion.
There are two main types of mediation:
1. Evaluative
2. Facilitative/Transformative.
Evaluative mediation is more solution driven and is aimed at ensuring that the
parties involved reach some form of binding agreement . This is the model
most often used in mediation which is mandated by the courts and it involves
lawyers from both parties who play a key part in the mediation process and
help to draw up the agreement if agreement is reached. In this type of
mediation, the mediators themselves are often experts in the area which is the
subject of the dispute and they play an important role in formulating potentially
acceptable solutions and driving forward the mediation process.
Facililitative/Transformative Mediation is very different:
Its aim is to give complete control of the process as well as the outcome to
the parties themselves. It is up to them what they discuss, how they discuss it
and whether they make any decisions.
You might wonder what the point of this type of mediation is. It might sound
rather vague. The reason for coming to mediation in the first place is precisely
because the parties haven’t been able to resolve their differences. But in fact
this kind of mediation is surprisingly effective. Its aim is to change the way in
which the parties relate to and communicate with, each other so that each

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party gains a clearer understanding of the other’s point of view and the values
or reasons which underpin it.
In practice, mediators may use different styles of mediation or a mixture of
styles depending on the nature of the conflict.
The results of a pilot study 2 involving the use of mediation to resolve medical
negligence cases found that:
“ mediation promises self-determination by allowing the parties to speak for
themselves and define the issues at stake.”
The study also reported that the benefits of mediation included a) addressing
the real causes of the dispute b)reducing the alienation of the parties and
restoring relationships between them and c) Facilitating lasting settlements.
Mediation in the medical arena:
In 2003, mediation was used to help resolve the damaging dispute between
the NHS and parents at Alder Hey children’s hospital, where the organs of
babies and children had been retained without the knowledge or consent of
their parents.
The mediation resulted in agreement on the financial compensation to be
awarded but equally importantly, also involved a public apology from the NHS
Trust and public acknowledgement of the role parents had played in bringing
about changes in medical practice. 3
Without this public apology many of those involved in the process believed
that agreement would not have been possible. As a result of the mediation
process, a memorial plaque at the hospital was put up which reads:
“This plaque is dedicated to the memory of children and pre-viable
babies who died and from whom organs were wrongly retained in former
times. This dedication acknowledges the role of parents in bringing
about appropriate change.”
These words are immensely important. They acknowledge the intrinsic value
of every piece of human tissue which was retained without parental consent;
they acknowledge that retaining this tissue was wrong; they acknowledge the
role of parents in putting things right and, perhaps most important of all, they
bring closure to what were damaging and distressing events for all those
involved by placing them “in former times”
Other hospitals where similar events took place did not go through a process
of mediated truth and reconciliation leaving, I am told, a sense of unfinished
moral business.
Both the mediation process at Alder Hey and the plaque are testament to two
of one of the fundamental principles of mediation which is to achieve genuine
and long lasting resolution by recognizing and acknowledging competing
2
Mulcahy L Mediating Medical Negligence Claims
3
http://www.cedr.com/CEDR_Solve/casestudies/results.php?param=105

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points of view.
In the field of neonatal medicine, another area fraught with emotional
complexity and ethical dilemmas - as we’ve seen - a report on ethical issues
in neonatal medicine published by the Nuffield Council on Bioethics in 20064
said :
“We consider that there are potential advantages to using mediation in
disputes about critical care decisions in neonatal medicine… Mediation will
not…provide an answer to every dilemma. It may, however, facilitate better
communication, reduce acrimony and narrow down the issues requiring
formal adjudication in the courts”
If you were to draw up a balance sheet of the essential differences between
litigation – ie going to court – and mediation, it would look something like this:
Litigation Mediation
Adversarial Consensual
Inflexible Flexible
Backward-looking Forward-looking
Externally imposed judgment Mutually agreed solution
Time-consuming Relatively quick
Very costly Relatively cheap
Why do we need mediation when there are clinical ethics committees?
Underlying everything in medicine is of course, the need to balance the
burdens and benefits of treatment – particularly when the treatment is
invasive and likely to cause pain and distress and above all, when that pain
and distress is going to be the result of treatment which is going to be
palliative rather than curative.
In paediatric medicine, the calculation of burdens and benefits (as we heard
4
http://www.nuffieldbioethics.org/go/ourwork/neonatal/publication_406.html

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from Ross Pinkerton and Simon Meller, Child B’s doctors) can be
extraordinarily difficult to calculate. Weighing up the potential quality of life for
a child with a life-limiting illness against the time that child is likely to have left
to live , involves fundamental ethical principles. Here is a very brief guide:
A cheat’s guide to ethical principles:
Beneficence: an obligation for clinical teams to do good to their patients
Non-maleficence: an obligation to avoid doing harm.
Autonomy: an obligation to respect a patient’s right to self-determination by
acknowledging their wishes and choices.
Justice: an obligation for clinicians to accord equal value to their patients.
Putting these principles into everyday medical practice is what we call clinical
ethics.
Over the past 10 years or so, Clinical Ethics Committees have been formed
in hospitals throughout the UK. These committees are multidisciplinary and
include Lay members from a wide variety of backgrounds.
The aim of these committees is to provide support for decision-making
involving complex ethical issues and to act as a forum in which healthcare
professionals can bring complex cases for wider ethical debate and support.
Many CECs also provide input into hospital policies, for example, End of Life
Care and the (elusive) pandemic Flu outbreak)
Some committees, for example, the one I sit on in Great Ormond Street, also
offer a “rapid response” service to individual clinicians or medical teams, if
they have a complex case which needs urgent discussion of the ethical issues
involved. It is important to stress that Clinical Ethical Committees have no
legal status and can’t tell a clinician what to do. They can simply help analyse
the ethical issues in particular cases and act as a sounding board for
clinicians who may have nowhere else to turn within their hospital for this kind
of advice and support.
The Medical Mediation scheme:
There is no doubt that Clinical Ethics Committees provide a very valuable
service to healthcare teams and to individual clinicians. However, at present
there are only 87 CEC’s serving 298 Hospital Trusts and 152 primary care
Trusts. Many of these CECs meet only once a month, others, once every two
months.
In simple terms that means there are an awful lot of clinical teams out there
who do not have access to a ready and easily available source of advice if

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they find themselves facing a situation in which there are differences of view
about what is in the best interests of a patient.
The more time is allowed to pass without the issue being addressed, the more
potential there is for the conflict to escalate. Even where there are Clinical
ethics committees, those who sit on them are not trained as mediators.
Neither is the remit of an ethics committee to mediate between parties.
Medical Mediation: what is it and how would it work?
The idea behind Medical Mediation is that it would be an independent, not
for profit organisation set up specifically to offer mediation in the complex field
of medico-ethical disputes involving children and young people. The services
it provides will be available to clinicians , parents and where appropriate ,
children and young people .
Where there are disagreements between parents and medical teams, all sides
need somewhere to turn which offers an impartial, confidential , non-
judgmental forum in which discussions can take place in the hope that they
can be resolved.
The need for such a forum seems to be confirmed by the General Medical
Council’s new guidance on “Treatment and Care Towards the end of life”
which came into force last week. It says:
“If disagreements arise about what course of action would be in a child
or young person’s best interests, it is usually possible to resolve them
by, involving an independent advocate, seeking advice from a more
experienced colleague…holding a case conference or ethics
consultation or by using local mediation services.” 5
At present, there is no independent national mediation service offering
specialised mediation aimed at resolving such conflicts.
Medical Mediation would provide a range of services:
1.Facilitated discussion between parties – talking to each party separately to
try and understand what is causing the disagreement and then, when
appropriate, bringing them together to see if a resolution can be reached.
Providing everybody with an opportunity to be heard by an impartial mediator
at an early stage can prevent disagreements escalating.
2. If the dispute has already escalated we would provide formal mediation to
see if it can be resolved without going to court.
5
http://www.gmc-uk.org/static/documents/content/End_of_life.pdf
para 108

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3. If legal action has begun, mediation may remain an option if all parties want
it and if the court agrees.
Any mediator provided by Medical Mediation would have an accredited
qualification in mediation skills, and an academic qualification in medical
ethics and law.
4. Medical Mediation would also offer:
Training in effective communication and conflict management for medical
teams.
Next steps:
The next step is to seek funding to run the scheme as a pilot in a number of
different hospitals as well as running a prospective randomised research
study to evaluate both the process and outcome of this type of mediation.
Many doctors I’ve spoken to find it extremely difficult to talk to distressed or
angry parents. But the key to preventing disagreements escalating can be in
the speed of response, in having conversations at an early stage rather than
letting time slip by because everyone is afraid of conflict.
Conflict can be very frightening – it’s not surprising that most of us will do
anything to avoid it but in fact this can just make it worse. My hope is that
being able to have some of these extremely challenging conversations in the
presence of a trained mediator, will help all those involved to reach a better
understanding of each other’s position and in so doing, restore respect and
trust. Even if the clinical outcome remains the same.
Thank you.
Sarah Barclay
sarah@medicalmediation.org.uk
www.medicalmediation.org.uk

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