Добавил:
Sekretar
kiopkiopkiop18@yandex.ru
t.me/Prokururor I Вовсе не секретарь, но почту проверяю
Опубликованный материал нарушает ваши авторские права? Сообщите нам.
Вуз:
Предмет:
Файл:Ординатура / Хирургия / Библиотека им академика М.И. Перельмана / Книга_3612_Библиотеки_им_академика_М_И_Перельмана
.pdf
430
Key Questions in CONGENITAL CARDIAC SURGERY
he/she was conceived, if different) automatically has parental
responsibility.
The child’s father gains parental responsibility automatically if married
•
at the time of the birth registration. Since 2003, unmarried fathers also
get parental responsibility automatically, when they register the birth.
Alternatively, parental responsibility can be later acquired by the
•
unmarried father, either with the agreement of the child’s mother, by
application to a court or by marrying the mother.
Parental responsibility is passed to adoptive parents on legal
•
adoption. It may be shared with guardians appointed by parents or
with local authorities, and is linked to various legal orders.
8 How does the parent decide whether to provide
consent?
The person with parental responsibility who provides consent for a
•
child’s surgery must act in the child’s best interests in so doing.
These interests are usually self-evident, and the agreement between
parents and surgeon is reached after full disclosure of the relevant
information.
This agreement is not invariable. In a case concerning a child with
•
biliary atresia, the clinicians wished to perform a liver transplant, and
considered the prospects of success to be good. The parents
refused their consent, on the grounds that the surgery was not in the
child’s best interests. The Court of Appeal held that the assessment
of the child’s best interests went wider than the narrower medical
best interests, and that the child’s connection with his family held
great weight in this regard. Accordingly, the Court refused to enforce
the hospital’s request that the mother would bring her child in for
surgery. The judgement could be criticised, in failing to differentiate
between the interests of the child and those of his mother.
The case, however, provides an example of the balancing act
•
performed by courts.
9 Can children under 16 provide consent independent of
their parents?
Depending on their maturity and the intervention that is proposed,
•
children from a young age may be able to provide independent
consent. For example, a 4-year-old child may be able to consent to a
blood pressure measurement, a 6-year-old to a venepuncture and a
10-year-old to the removal of a chest drain.
There is no suggesting that the parents should be excluded from this
•
process and such an exclusion should be avoided, if possible. It is
12 Informed consent in congenital cardiac surgery
Данная книга находится в списке для перевода на русский язык сайта https://meduniver.com/
for the family as a whole to decide what part the child’s potential
competence should play in the consenting process. But the
involvement of children in this process will strengthen the therapeutic
relationship and is to be encouraged.
A child’s previous experience is of great importance.
•
It is submitted that following the very recent diagnosis of structural
•
cardiac disease in a 15-year-old, who has been asymptomatic up to this
point, the child will be so horrified by the dissolution of his comfortable
and well organised life as to be incoherent, likely incapable of
consenting for the necessary cardiac catheter investigations.
By contrast, another 15-year-old has been teetering on the brink of
•
cardiac failure for many years. He has already undergone multiple
cardiac interventions, including a sternal dehiscence 3 years ago. He
knows a great deal about cardiac surgery and has seen its
complications and disadvantages wreak havoc in his congenital
cardiac peer group. Now facing his transplant, it is possible he will
be competent to provide independent consent.
Therefore, it is important objectively to determine whether a child of
•
15 years or younger has the necessary experience to inform his or
her competence to provide independent consent for the proposed
intervention.
431
10 How is the competence of a child younger than 16
established?
For this assessment, the Gillick test is widely used.
•
The test derives from a landmark case where it was established that
•
a child who is competent to provide consent should be allowed to do
so, independently of their parents.
The test requires that the child has sufficient understanding and
•
intelligence to enable him or her to understand fully what is involved
in a proposed intervention. Thus, if a child can understand:
a) that a choice exists;
b) the nature and purpose of the procedure;
c) the risks and side effects;
d) the alternatives to the procedure;
e) and is able to:
i) retain the information long enough;
ii) weigh the information;
iii) arrive at a decision;
iv) and to be free from undue pressure.
Then he or she would be deemed competent for the proposed
intervention. It will be seen that competence rests on intelligence,
maturity and experience. Not on age.
Key Questions in CONGENITAL CARDIAC SURGERY
Gillick provides a high threshold for consent, consistent with public
•
policy. It would be highly undesirable to allow incompetent children
to provide consent for interventions which they could not fully
understand.
The fact that a child has to ‘prove’ their competence places a barrier
•
to children that is never experienced by adults, whose capacity is
presumed.
11 Is ‘Fraser’ competence synonymous with ‘Gillick’
competence?
During the Gillick case, an additional set of guidelines were
•
suggested by Lord Fraser, specifically for doctors who assist with
reproductive decision-making by children under 16.
It should be noted that these do not replace the Gillick test, nor are
•
they synonymous with it.
432
12 Can a Gillick competent child refuse treatment?
The vast majority of Gillick competent children who refuse treatment
•
are refusing relatively trivial procedures. You may be entitled to rely
upon their parent’s consent if necessary, but it is a matter for clinical
judgement whether the procedure could be deferred, to allow the
child further time to consider, and be reconciled with what is likely to
be an inevitable outcome. (The problem of refusal in Gillick
competent children is dealt with in the same way as for the 16- and
17-year age group, below.)
The Gillick competent child, however, does not enjoy an equal right
•
to refuse treatment. Only those cases in which the refusal of lifesaving treatments in these children is at issue have reached the
court. Given the opportunity, courts have resolutely denied the
(otherwise) competent minor the right to choose death:
a) A 15-year-old girl refusing her consent for a life-saving heart
transplant had her refusal overridden by the courts. M’s reason
was that she “…would rather die than have the transplant and
have someone else’s heart. …I would feel different with
someone else’s heart… that’s a good enough reason not to have
a heart transplant, even if it saved my life…” Nevertheless,
balancing the child’s undoubted resentment against the certainty
of her death in the absence of a transplant, the court was
obliged to act in her best interests, and keep her alive.
Accordingly, the court authorised the operation;
12 Informed consent in congenital cardiac surgery
Данная книга находится в списке для перевода на русский язык сайта https://meduniver.com/
b) In another case, a 14-year-old girl required a blood transfusion.
She was a Jehovah’s Witness, and refused the treatment. The
court found that even if she had been Gillick competent, her grave
condition would have led the court to authorise the transfusion. As
it was, the girl was unaware of the manner of death from anaemia
and was basing her views on those of her congregation, rather
than on her own experiences. For these reasons, she was judged
incompetent to make this decision for herself.
13 Can young people provide independent consent?
People of 16 and 17 years of age are presumed to have the capacity
•
to provide consent for surgical, medical and dental treatment.
Made possible by the Family Law Reform Act 1969, this recognised
•
that the ‘lifestyle’ decisions that teenagers were taking in that era
contrasted sharply with the age of majority (21 years) at the time. The
new law reduced the age of majority to 18 years, and introduced the
notion that 16- and 17-year-olds had
upon by the Mental Capacity Act 2005, which provided the
presumption of
Young people are thus able to provide consent for treatment in the
•
absence of their parents. However, the parental right to provide consent
for treatment lasts until the end of childhood. This has the effect of
providing a ‘safety net’, allowing 16- and 17-year-olds the opportunity of
consent for themselves or deferring to parents if they see fit.
Once these children reach adulthood on their 18th birthday, all
•
parents’ rights disappear. For the rest of their life, they alone can
provide consent, either directly in person, or in some circumstances,
by a proxy method.
ãÉåí~ä=Å~é~Åáíó
äÉÖ~ä= Å~é~Åáíó
for this age group.
. This was built
433
14 How to deal with a young person who wishes to have
a treatment with which her parents disagree?
If parents and a child of this age disagree, it is wise to exercise caution.
•
If a 16- or 17-year-old wishes to exercise his or her right to consent,
•
whilst parents oppose the decision, then one would be entitled to rely
on this consent.
However, it would be important to understand the basis for their
•
disagreement. For instance, if one suspected that the young person
was not capacitous, the presumption (that the child’s consent could
be relied upon) should be challenged. This can simply be done by
establishing whether all the relevant information is properly
understood, and that information can be retained, believed and
weighed up. Finally, that a decision could be appropriately
communicated. If the young person can, then he or she has capacity.
434
Key Questions in CONGENITAL CARDIAC SURGERY
But it is still wise to tease out where the problem lies, since this is a
•
most unusual situation, and it would be in the young person’s best
interests to resolve the issue before surgery, if that is feasible.
15 How to deal with a young person who refuses a
treatment that his parents wish him to have?
The problem, reversed, is of a young person who refuses treatment
•
but who is accompanied by a parent who provides consent. Valid
parental consent will make the procedure ‘legal’ but clinical
judgement should be exercised as to whether proceeding with the
treatment against the young person’s wishes is both practicable and
in his or her best interests. Modern English law views parental
responsibility as a dwindling right, steadily eroded by the maturing
child’s increasing autonomy.
For elective procedures, it is recommended that these should be
•
abandoned until the dispute is resolved.
For emergency or life-saving procedures, alternative ways to
•
administer treatment that are still consistent with the young person’s
best interests should be explored. However, if life or limbs were
under threat, and there was no valid alternative choice but to provide
a definitive operation, then reluctantly, restrain and proceed could be
the only way forward. A postoperative embolism that has resulted in
an ischaemic hand could be an example of this situation. It should be
noted that in reality, the amount of resistance that a child of any age
puts up is usually inversely proportional to their malaise and
discomfort. In the gravely ill, refusal is rare.
For urgent procedures, if a 16- or 17-year-old refuses treatment for
•
the preservation of her life, such as the transfusion of blood, courts
invariably choose to override the child’s autonomy and provide an
order which allows lawful provision of the treatment against the
child’s wishes. This either upholds the parental wishes for treatment
or overrides parental refusal. Although these cases are rare, the
timescale within which the decision needs to be made allows
sufficient time for the court to be contacted, providing the surgeon
with the necessary authority.
16 Does the young person’s right to consent extend to
research activities?
The 1969 law did not extend this right to consent for research or
•
interventions that do not potentially provide a direct health benefit to
the individual concerned.
However, if competent along ‘Gillick’ lines, a young person may be
•
able to provide consent for these activities.
12 Informed consent in congenital cardiac surgery
Данная книга находится в списке для перевода на русский язык сайта https://meduniver.com/
17 How can consent be obtained from ‘incapacitated
adult patients’ requiring interventions for congenital
heart disease?
All patients who are 18 years or over are presumed to have capacity.
•
Where there is a suspicion that the adult about to give consent lacks
•
capacity, that presumption may be rebutted if, on the basis of the
Mental Capacity Act 2005, it has been established that they lack
capacity to make the relevant decision; for instance, the decision to
agree or refuse cardiac surgery.
Both the local trust’s mandatory training or that of the General
•
Medical Council are helpful and ubiquitous sources of information
concerning the use of the Mental Capacity Act 2005.
If the adult in question has capacity, it is important to realise that no
•
consent can be provided from any source. In most situations, there
will be universal agreement between the family, friends,
acquaintances, doctors and nurses that the procedure is in the best
interest of the patient. In this common situation, it will be completely
acceptable to proceed on this basis. Although no consent will be
available, the procedure will be lawful if performed in the patient’s
best interests.
However, there are circumstances in which despite universal
•
agreement, the Court of Protection should be consulted, including:
435
a) organ donation;
b) non-therapeutic sterilisation of incapacitated adults;
c) foreseeable necessity for forceful restraint;
d) use of treatments that are innovative or experimental, or involve
an ethical dilemma.
If the incapacitated adult is unbefriended, with no accompanying
•
persons, the Mental Capacity Act 2005 insists that an Independent
Mental Capacity Advocate should be nominated, to ensure that the
patient’s circumstances have been subject to all reasonable scrutiny,
before the best interests of the patient can be determined.
In the unusual circumstances where there is dissent from any
•
quarter, then resolving the dispute before proceeding is strongly
advised. If the dispute cannot be transformed into an agreement from
the dissonant parties, (irrespective of whether they are clinical or
family) then a declaration from the Court of Protection will be
required.
There are circumstances where patients may, during an adult era of
•
capacity, have made advanced decisions (that anticipate their own
incapacity) to refuse treatment. If such a decision exists, then advice
should be sought.
436
Key Questions in CONGENITAL CARDIAC SURGERY
Equally, the capacitous adult may have created a lasting power of
•
attorney, embodied in a friend or relative (donee), to be activated by
the advent of their incapacity, authorising the donee to give or refuse
consent to the carrying out or continuation of a treatment on their
behalf. In these circumstances, advice should be sought.
Less likely, the Court of Protection may have appointed a deputy to
•
make decisions on behalf of the incapacitated patient but it is unlikely
to have given the deputy powers to make medical decisions, since
the courts prefer to reserve these difficult decisions for themselves.
Social services have no role in the provision or withholding of
•
consent in this group of patients.
18 Why is it necessary to disclose information when
seeking consent?
Clinicians must supply the patient or parent with enough information
•
to make an informed decision as to whether they wish to undergo the
proposed intervention.
This is entirely separate from the need to ensure that patients are not
•
subjected to an unwanted touch.
Whilst training ensures that surgeons are acutely aware of surgical
•
hazards, our patients are not. As a consequence, doctors often fail
to appreciate how little patients understand about the consequences
of intervention. Examples are numerous, including:
a) probably only a few patients appreciate that surgery on their
back may lead them to urinary and faecal incontinence, or
failure to move their legs;
b) that misdirection of a subclavian needle may lead to a
thoracotomy, to arrest the haemorrhage thus caused;
c) that a difficult inguinal hernia repair could lead to loss of the
ipsilateral testicle.
The process of consent, with disclosure of risks and side effects, is
•
designed to allow patients an insight into the risks that they and the
surgeon jointly face. Furthermore, patients cannot be expected to
anticipate the limitations of treatment or the possible alternatives.
Disclosing alternatives to treatment may be very important to a patient
•
who is otherwise unaware that they had a choice; for example:
a) a man facing excision of pulmonary metastases from
osteosarcoma may be blissfully unaware that cure is unlikely. If
he had known, he might have chosen an alternative route and
avoided thoracic intervention;
12 Informed consent in congenital cardiac surgery
Данная книга находится в списке для перевода на русский язык сайта https://meduniver.com/
b) a woman planning on going to her daughter’s wedding
tomorrow might just elect, tonight, to have her acute
appendicitis treated only with antibiotics, at least for 24 hours,
and take the risk.
19 What should be disclosed when seeking consent?
Most hospitals provide consent forms that guide the clinician as to
•
what should be discussed, broadly categorised as the benefits and
disadvantages of the proposed operation, together with the benefits
and disadvantages of alternative treatments, including those of no
treatment at all (Figure 1).
This position was articulated in the case of Pearce v United Bristol
•
Healthcare NHST [1999], 48 BMLR 118, and provided the
foundations for the standards for disclosure of risk:
“If there is a significant risk which would affect the judgement of a
reasonable patient, then in the normal course it is the responsibility
of a doctor to inform the patient of that significant risk, if the
information is needed so that the patient can determine for him or
herself as to what course he or she should adopt.”
This judgement, with some embellishment, was adopted in
Montgomery v Lanarkshire Health Board [2015], UKSC 11.
This judgement was reflected by the General Medical Council in
•
2008, which emphasised the importance of a discussion that leads
to consent, rather than a soliloquy delivered by a surgeon.
The legal prescription for the necessary disclosure was provided by
•
the Supreme Court in 2015, after a woman claimed that she would
have chosen a Caesarean section if it had been offered to her,
thereby avoiding neurological injury to her son. In this fundamental
case (Montgomery v Lanarkshire, 2015), the Supreme Court took
the opportunity to endorse and confirm various strands of previously
decided court decisions, pertaining to the disclosure of information
to patients prior to seeking their consent for surgery.
In so doing, the Supreme Court reiterated existing advice from the
•
General Medical Council. These various aspects of consent law in
England are set out in all the following sections.
The doctor is under a duty to take reasonable care to ensure that the
•
patient is aware of any material risks involved in any recommended
treatment, and of any reasonable alternatives or variant treatment.
The test of materiality is whether, in the circumstances of the
particular case, a reasonable person in the patient’s position would
be likely to attach significance to the risk, or the doctor is or should
be aware that the particular patient would be likely to attach
significance to it (Figures 2, 3 and 4).
437
438
Key Questions in CONGENITAL CARDIAC SURGERY
Figure 1. Guidance provided to clinicians on the back of a standard
consent form. Such forms are used widely across NHS hospitals.
12 Informed consent in congenital cardiac surgery
Данная книга находится в списке для перевода на русский язык сайта https://meduniver.com/
439
Figure 2. Standard consent form for investigation or treatment in use in
a tertiary centre. This form is used by clinicians when patients are able
and entitled to provide their own consent, for example, adult congenital
heart disease patients. Continued overleaf.
Соседние файлы в папке Библиотека им академика М.И. Перельмана