ORGAN AND TISSUE DONATION
The majority of children who become organ donors have had accidents
involving major head injury or are children who have died as a result of sudden
intracerebral catastrophe. Early referral to the donor transplant coordinators
helps as it assists the coordinator in attending PICU promptly. Early referral also
leads to a decrease in the time the child remains on PICU after brain stem death
has been established and the consent for donation has been given. Only children
who are known to have HIV or have a family history of CJD cannot donate.
Donation in children with cancers may still be possible.
In children who die a cardio-respiratory death, or in children whose parents wish
to be present when their heart stops beating, the donation of tissues for
transplantation should be considered. Tissue donation allows the family to spend
time with the body of their child before the tissues are retrieved.
The list of contraindications for tissue donation is much more rigid than for
organ donation, as tissue transplantation is deemed to be life enhancing as
opposed to the life saving nature of solid organ transplantation. Children who
have malignancies, infections, positive serology or diseases of unknown
aetiology will therefore be excluded as tissue donors.
Approaching the family
There is no absolute right way to make the approach to donor families. Every
bereaved family will be different and as such the approach to ask about organ
donation will need to be tailored to their needs. Between 35 and 40% of families
will spontaneously offer organs for transplantation.
When should the family be approached?
It is generally agreed in the UK that families should have the discussion about
organ donation only after they have accepted that further treatment is futile
and that death is imminent. This may be after the results of the first set of
brain stem death tests have been discussed with them and when they have had
time to absorb this news.
Before approaching the family, it may be appropriate to contact the on call
coordinator for advice on the suitability of the child to donate. The coordinator
can make enquiries with Coroners and recipient centres early, to ensure that
organs can be donated. This would prevent approaching relatives unnecessarily
and causing distress should organ donation not be possible.
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Who should approach?
The clinician in charge of the child (who has already formed a close relationship
with the family) should make the approach on PICU. However the decrease in
the refusal rate when a transplant coordinator is involved in the approach to the
family is highly significant and should not be ignored. Sensitivity and
interpersonal skills are probably more important than status or seniority.
The important thing is that all families are approached and given the opportunity
to decide about organ donation for themselves. We know from speaking to
families after a donation, that the act of giving has been beneficial to them. It
may be the only positive outcome from an otherwise tragic situation.
Families who decide not to donate
Organ donation discussions should never be rushed and the family should be
made to feel free to say no as well as yes. There will always be families who say
no to donation, no matter how sensitive and compassionate the approach has
been. This may be difficult for the person who has made the approach; they
should strive not to take it as a personal failure. The most common reasons for
refusal are that the family know that the person who died did not want to
become a donor, or that the family do not want surgery to the body or that they
feel the person had suffered enough. The outcome of all discussions should be
documented in the patient’s notes.
There is also the scenario when a family offers organs or tissue, and it is very
obvious that the patient is not a suitable donor. They should be thanked for their
generosity and be given a full explanation of the reasons for refusal.
How to ask
Some people fear that asking a bereaved family about organ donation may cause
further grief and distress, but when a family is well informed, this rarely
happens. Even families who refuse donation are not unduly distressed by the
Below are some important points that may assist you when you are asking:
Choose a room which is quiet, away from the bedside and where you will not
Say that the request is routine in these circumstances
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Determine if the family have ever talked about organ donation and if the
child had ever expressed an opinion or wish
Do not ask for an immediate answer – allow the family time to discuss this in
Say that you are available to answer any questions they may have and give
them a time at which you will return to hear their decision.
After the family have agreed to the principle of donation, they may have many
questions on the practical aspects of donation, what organs can be used, what
time the organs will be taken, can they stay with him/her, can they see him/her
afterwards, etc. The transplant coordinator will help the family by answering
these specific questions. The family also need to be informed about the
necessary tests that must be carried out prior to donation, blood group tests, tests
for virology, chest x-rays etc. Once the family have had all their questions
answered then formal written consent can be obtained by the coordinator using
the “Lack of Objection” form.
After the donation
After the organ retrieval operation has taken place, the child’s body will be
returned to PICU, where the parents will be offered the opportunity to
participate in last offices, or to be with the child. Beforehand the coordinator
will have explained to the family the physical changes that they should expect.
These include the child feeling cold to the touch and the pallor associated with
Many organs and tissues can be used for transplantation, and donor families, and
indeed the staff involved in caring for the child, will receive anonymised
information after the donation on the progress of any recipients. The family will
be offered further follow up and support from the coordinator involved,
including letters and community visits. Staff involved will be offered debriefing
by the coordinator in the two weeks following the donation.
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