Supplementary memorandum by Dr Magi Sque
and Dr Tracy Long, School of Nursing and Midwifery, University
of Southampton
DR SQUE'S
AND DR
LONG'S
WORK RELATING
TO THE
FAMILIES OF
POTENTIAL ORGAN
DONORS
Q. What further research do you feel is needed
to investigate these issues and to develop ideas for encouraging
more relatives to agree to organ donation? In what ways do you
feel that involvement of the European Commission could help with
this work?
We need to increase the evidence to enhance
donation rates as there is very little work done with families,
health professionals or the public in UK and Europe. Therefore
we need studies at UK and European levels. The purpose of these
studies would be to inform best practice. I feel strongly however
that we need to get our house in order in UK and make organ donation
a research priority and get a number of large scale studies commissioned
urgently; particularly in areas that will illuminate the recommendations
of the Organ Donation Taskforce and underpin its implementation.
We have provided a list of studies that we believe to be priorities
(Please see Appendix 1).
The European Commission must make organ donation
a health priority and must commission and fund research in individual
Member States and EU projects. The Commission needs to establish
an EU co-ordinating centre eg Ethical, Legal and Psychosocial
Aspects of Organ Transplantation [ELPAT] based at Erasmus University,
Rotterdam. A similar organisation, the Gift of Life Institute
in Philadelphia mission states: "The Gift of Life Institute
aims to increase organ and tissue donation rates by providing
the most innovative, evidence-based training, and consulting services
required to enhance the skills, expertise, and practices of donation
professionals worldwide." An EU Co-ordinating centre would
oversee and work with Member States on:
— Research and development.
— Dissemination of best practice.
— Education and training.
— Exchange of best practice.
— Conferences and publications.
— Data storage and analysis.
ELPAT, funded by a grant from the European Union,
is based at Erasmus MC University in Rotterdam. It is attempting
to provide a structure through which the complex issues that concern
organ transplantation can be discussed by drawing on European
expertise in the legal, ethical and psychosocial aspects of organ
transplantation. ELPAT aims to map and resolve complex differences
between Member States by formulating European guidelines reflecting
the ethical, legal and psychosocial aspects of organ transplantation.
ELPAT's goal is to be a link between the European Union, the Council
of Europe and European Society of Organ Transplantation thereby
benefiting all the individuals within Member States in need of
a transplant operation. It is the first real attempt to get EU
experts in the field and with similar interests working together.
CHALLENGES FOR
HEALTH PROFESSIONALS
IN HELPING
FAMILY MEMBERS
OF POTENTIAL
ORGAN DONORS
Q. What arrangements do you think could be
most effective for helping the families of potential organ donors
to overcome their concerns and to agree to the donation of organs
from a deceased relative? What evidence can you describe to us
from across the EU or elsewhere in the world about the effectiveness
of the arrangements you suggest?
At a National level the present lack of a cohesive
system for making organ and tissue donation a priority within
the NHS is the main barrier to increasing donation rates.
The lack of a cohesive system is hindering the
efforts of health professionals who are striving to change this
situation. Changes within the present day NHS, poorly informed
and trained staff, and a poorly informed public, are undermining
their aim of providing the best possible service to potential
donor families and thereby increasing the donation of both solid
organs and tissues.
Most of the barriers within the NHS have been
clearly identified in the Organ Donation Taskforce report as well
as being placed in front of this committee by earlier speakers.
By implementing the recommendations of the Taskforce the foundations
will be laid for a service that helps health professional's support
bereaved family members to reach decisions about organ donation
that they have confidence in and feel satisfied with.
Preparation and training of health professionals
Those who are in the front line of organ and
tissue donation should have mandatory training, which is centralised
and standardised. Training that is based on the best evidence
and not personal preference. It is essential that tissue and blood
donation are also fully integrated into this training as both
of these activities are reducing within the UK, and yet are greatly
influenced by the intervention of knowledgeable, positive and
skilled health professionals.
On a wider scale all training for health professionals,
must address organ and tissue donation. This is in place in countries
such as Norway, Belgium, France, Portugal, USA and Australia.
In these countries organ and tissue donation is part of the curriculum
at undergraduate and post graduate, or post registration levels.
Issues underpinning organ and tissue donation are embedded in
ethical working practices and end of life care modules.
RAISING PUBLIC
AWARENESS OF
ORGAN DONATION
ISSUES
Q. How important do you think that raising
public awareness about organ donation and transplantation issues
will be in seeking to raise the level of organ donation rates
across the UK as a whole; and among particular sub-groups of the
population? Please would you describe how you think such awareness
raising could most effectively be carried out
Increasing public awareness about organ and
tissue donation is crucial in seeking to increase donation rates
in the UK and Europe as organ and tissue donation can only exist
with the participation of society and the support of the public.
This support is fragile because organ donation whether deceased
or living is an emotive issue and depends to a large extent on
public trust in the professionals who are making decisions about
the life or death. Due to the low numbers of people who die in
circumstances that facilitate donation potential donor families
are very unlikely to have any role models for their behaviour.
Unlike a number of European countries the public
in the UK [and USA] were not given the opportunity to be involved
in the discussions concerned with setting up laws and defining
under what conditions organ donation could take place. A questioning
British public now needs to understand that organ donation is
something they may be asked about as part of being involved in
a health system; or at the death bed. Therefore they need non-crisis
information to develop trusting relationships with health professionals
and to be able to make informed choices at the bedside.
Information regarding the possibility of organ
donation should be therefore be fundamental to all areas of UK
and EU health care systems and not left until individuals are
at the death bed. The function of public education should be to
enhance awareness of organ donation to the extent that when the
question of organ donation is raised the idea is neither foreign
nor intimidating to the grieving family but simply reminds them
that other lives hang in the balance of their response.
The circumstances of loss and bereavement associated
with organ donation are culturally challenging, especially the
post mortem procedures on the body. There is a need for public
information and education about the procedures surrounding donation
and transplantation, ie the concept of death certified by brainstem
testing; brainstem testing; the nature of the donation operation
(ie it is a careful surgical operation) and, the appearance of
the donor following the operation, and the possibility and process
of donation after cardiac death; the propriety of the donation
operation; the disparity in need for organs and organ availability.
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. Sque was advised that, in the USA,
for every donor, approximately 1,000 people will receive informal
donation education. Meeting the needs of families involved with
donation may therefore be an effective way of improving donating
rates across the EU.
Support for the donor families should start
at the bedside of the donor and be continued for as long as the
need exists. One of these special needs is that it is important
for the family to be cognisant of the difference a transplant
made to a particular recipient's life, so they can "picture"
their donor's achievement.
Donor families wish this achievement of their
donor to be recognised, valued and not forgotten. A number of
strategies have been used to promote this on a personal level
such as: thank you letters from transplant coordinators and recipients,
updates on recipients' progress, remembrance cards sent to the
family on the anniversary of the death and donation. On a public
level in some areas there are commemorative thanks giving church
services and the British Organ Donor Society has access to an
avenue of lime trees in Wimpole Park in Cambridge, which can be
adopted in the memory of a donor or recipient, while Donor Family
North is developing a commemorative quilt.
In the USA there are memorial gardens. An example
of a memorial to organ and tissue donors is the granite memorial
which stands on the main walkway into the entrance of the Jackson
Memorial Hospital in Miami. This is not only memorial to donors
but acts as a tool of public education. Miami had one of the highest
rates of donation in the USA.
Are there other ways [such as a books of remembrance
in hospitals] that could help families realise that the gift from
their loved one is appreciated, valued and not forgotten? We probably
need something of national significance. The bottom line is, and
as suggested by the Organ Donation Taskforce, that we need research
with families to help us understand the best way to acknowledge
their donor and their families' generous decisions.
All promotion advertising should stress the
importance of discussing donation with family members or the person
expected to make decisions following death.
It might be helpful for charitable organisations
and UK Transplant to work together to promote awareness about
organ donation.
20 February 2008
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