Recommendations
Chapter 11. Consent
3. New Approach to Consent
3.1 A more flexible yet formal document is required,
setting out all the options clearly. It should be used nationally.
The document should be in a question and answer format capable of
covering the needs of any individual case. It should be completed
jointly by the clinician, a bereavement adviser and the next of
kin. We have heard evidence that the specialist cardiac liaison
nurses at Alder Hey have successfully taken up a role supporting
parents and clinicians in the obtaining of consent. It works well
and clinicians, as much as the parents, value the support that this
system provides. This role should be performed in a wider context
by bereavement advisers and we recommend that it is adopted nationally.
3.2 The form will be longer than the existing form. This
will allow the questions to be drawn up more sensitively and to
cover all areas necessary for fully informed consent. It should
include any instruction from the next of kin for final disposal
of organs or tissue. The next of kin should be provided with a copy
of the document which should be signed by the clinician, bereavement
adviser and next of kin. Later sections of the same form could deal
with other matters related to the death, with which the bereavement
adviser can assist. This written record will ensure that clinicians
discharge their responsibility to provide all necessary information
to the next of kin. The next of kin can then discharge the responsibility
placed upon them by the Human Tissue Act 1961 to make an informed
decision.
3.3 Once the consent form is signed we favour the next of
kin relinquishing further control. This relinquishment is to be
subject to the next of kin having the right to specify how, following
completion of the purpose for which it was retained, the material
should be disposed of respectfully. This is to include their specified
religious requirements. We have already stated that the intended
use of any organ to be retained must be explained fully to the next
of kin. A more liberal attitude should be considered with regard
to the retention and use of tissue, particularly in the form of
wax blocks and slides. These are of invaluable benefit for research
and teaching. They may also be an important resource for families
who may seek access to archived material for the benefit of their
family and future generations.
3.4 Retained tissue is an invaluable asset for diagnostic
as well as research purposes. Once fully informed consent has been
obtained for its retention and use, the hospital's undertaking to
use it and dispose of the remainder respectfully should be enough.
Were it otherwise we would have a situation where clinicians/researchers/teachers
would have a difficult obstacle course to negotiate. This could
involve repeated requests to parents for additional consent as the
original research developed and diversified or as new interests
arose. The consent to retain tissue should be general, to permit
use within ethically approved research projects so long as it is
treated respectfully throughout, including its ultimate disposal.
3.5 We set out below an illustration of the content of the
consent form we envisage. The list is for discussion purposes and
is not prescriptive.
