The role and needs of families
244. The refusal of consent for organ donation
by the relatives of potential donors is a significant barrier
to raising the level of donation rates in the UK, yet this problem
is not found to the same degree across the EU as a whole.
245. Dr Matesanz reported that the family
refusal rate in Spain overall was only 15% compared with about
40% in the UK. Moreover, among the 100 to 120 British people resident
in Spain who came to the state of brain death during 2005 and
2006, every one of the families agreed to organ donation. "So
the family refusal rate of the British in Spain is zero"
(QQ 307, 326).
246. Witnesses were able to identify a range
of issues that families found difficult and it was acknowledged
that donation decisions are necessarily made at a time of great
distress. Dr Magi Sque, a researcher with considerable experience
of working with donor families, told us, "I think we also
have to realise that we are not only dealing with bereaved relatives
but the requests for organ donation are most likely to arise out
of situations of very sudden, unexpected and untimely deaths.
Also it happens in a very provocative and emotional environment.
All the evidence has told us that these types of bereavement tend
to be more difficult than ones that are anticipated" (Q 192).
247. Dr Sque went on to emphasise the importance
of handling sensitively families' bereavement, but was keen to
stress that even at this difficult time many relatives wished
to be approached about the issue of organ donation. She advised,
"Healthcare professionals should feel very confident and
know that relatives are most likely to be grateful to them for
approaching them to ask about organ donation. We know from our
studies for instance that relatives are not offended, it does
not increase their distress; they did understand that health professionals
have a responsibility to ask and they are sympathetic to health
care professionals that are tasked with this discussion as they
realise it must be difficult for them" (Q 192).
248. Dr Tracy Long, Dr Sque's research
collaborator, went on to discuss some of the questions which relatives
often put to health care staff at this time such as "is my
relative really dead?"; "is s/he going to be treated
with dignity?"; "are her/his organs going to be used?"
Her view was that, ideally, staff should take the initiative in
addressing these concerns with relatives in case they felt uncomfortable
raising them. She advised "You need someone who will say,
'Some people have these concerns, is that an issue for you?'"
(Q 196).
249. Other witnesses identified what they saw
as more deeply rooted reasons for relatives to object to donation.
Lesley Bentley, Chair of the Patient Liaison Group of the Royal
College of Surgeons, believed that it was often difficult for
families to discuss and reach decisions on matters relating to
organ donation. She thought this might be because, "in our
society in particular, there may be a culture of reluctance to
talk about death and the emphasis in society is on actually remaining
youthful and putting it off". She saw this as adding to the
traumatic experience of relatives who faced a donation decision
(Q 149).
250. Ms Jayne Fisher, Chair of the UK Transplant
Coordinators' Association, reported the view, based on her own
experience and that of colleagues, that one of the main fears
of relatives was that taking organs would mean the "mutilation"
of the donor (Q 290).
251. This view was supported by Dr Sque,
who thought that a cultural distaste for having the body interfered
with after death was to be found across the whole population,
not only among ethnic minority groups (Q 195).
252. Dr David Evans, who opposed the donation
of organs from patients whose death had been determined on the
basis of brain stem death testing, found it completely understandable
that a family should not be willing to agree to the donation of
organs from a relative who was still breathing and whose heart
was still beating (pp 213-216).
253. It was acknowledged by many witnesses that
families played an important role in facilitating donation, not
only by allowing donation to proceed but also by providing information
about the donor. Both patient groups and health care professionals
took the view that it was most important to treat the families
with care, and to respect any decision not to donate.
254. Reflecting this general view, Dr Sque
and Dr Long were keen to stress the additional advantages
of a family having a positive experience in the context of donation.
"Donor relatives have an important contribution to make in
sustaining donation rates both in the educational role they play
within their own communities and the formal roles they sometimes
adopt to help educate health care professionals and bereavement
support groups". Based on reported experience in the USA,
she advised that, given the right circumstances, families "appear
motivated by what their deceased family member achieved through
donation, illustrated by the heroic status which is attributed
to them" (pp 75-79).
Conclusions
255. We understand that the living donation of
an organ, most often of a kidney, is an admirable gift which often
has advantages not only medically for the recipient but also,
in other ways, for the donor, especially when she or he is the
carer of the recipient. While we see it as most important that
such donations should be freely given, with no coercion of the
donor, we do see the case for considering whether some reimbursement
should be provided to living donors of the costs they incur which
are attributable to the transplant donation process. (paras 223-231)
256. We support the view that brain stem testing
should be offered for all patients in whom brain stem death is
suspected, and that this is in their interest irrespective of
their donation wishes. (paras 232-235)
257. We understand the potential for a conflict
of interests to arise for medical staff when caring for people
who are identified as potential organ donors. We are persuaded
that it is essential, for the maintenance of trust in health services,
that all such people should be dealt with as patients in the first
instance. They should be provided with appropriate treatment and
care, in line with their best interests, until the point at which
it is agreed that withdrawal of treatment is medically justified.
(paras 236-238)
258. We acknowledge the difficulties faced by
clinicians who might wish to maintain a patient's stability, in
the interests of maximising the chances of donation, when the
steps which need to be taken to do this are not directly in the
patient's medical best interest. We understand also that the legal
uncertainty surrounding this issue causes problems for clinicians
and results in organs being lost to donation (paras 239-244)
259. We are impressed by the evidence we have
received about how important it is, in attempting to increase
the supply of organs for donation, not to lose sight of the needs
and concerns of patients and families. (paras 245-255)
Recommendations
260. We recommend that the Government should
explore the merit of making provision for the reimbursement to
living donors of the costs they incur which are attributable to
the transplant donation process.
261. We recommend that the Government should
seek to ensure that brain stem testing becomes standard practice
for all patients in whom brain stem death is suspected.
262. We recommend that the Government should
take steps to ensure that, for a person who has clearly stated
their desire to donate organs, it is recognised legally that it
is in their best interests to facilitate donation through the
appropriate maintenance of their organs prior to or immediately
after death. When the patient's wishes are unknown, but the family
have agreed to donation, the same approach should be taken.
263. We recommend that the Government should
ensure that in all cases of organ donation, sufficient staff resources
are made available for caring and informed support to be given
to the relatives of the donor.
