Organ and Tissue Donation: supporting the decision-makers
Submitting InstitutionUniversity of Southampton
Unit of AssessmentAllied Health Professions, Dentistry, Nursing and Pharmacy
Summary Impact TypePolitical
Research Subject Area(s)
Medical and Health Sciences: Public Health and Health Services
Summary of the impact
An 11-year programme of translational research carried out at the
University of Southampton into the decision making of bereaved family
members regarding organ and tissue donation has led to direct impacts on
health care policy and practices. The research examined why families of
the newly deceased decide for or against organ and tissue donation, and
what support they need during this process. As a result, both the approach
and service provided post donation to approximately 5,700 bereaved family
members has changed. Findings have impacted on the training of
approximately 250 specialist nurses working for National Health Service
Blood and Transplant (NHS BT) and are challenging the current
informational/documentary systems that are in place to facilitate
donation. Findings from this extensive body of work are now embedded in
NICE guidance, national clinical practice guidelines and public awareness
Some 1,000 people in the UK die each year due to a shortage of organs
available for transplant. These shortages are linked to 40% of family
members refusing donation requests after the death of a family member, a
figure rising to 70% among ethnic minorities. For tissue donations, the
situation is more serious. Few people understand what tissues can be
donated and why they are needed, resulting in refusal rates between 25%
and 75%. This lack of knowledge impacts on the number of tissues available
for use in transplant operations and research focused on developing new
treatments and medications.
The Organ/Tissue Donation Research Programme (OTDRP) based within the
Faculty of Health Sciences at the University of Southampton commenced in
2001 under the leadership of Dr Magi Sque (Senior Lecturer, at Southampton
2000-2009) and is now led by Dr Tracy Long-Sutehall (Principal Research
Fellow, 2001-present). The first research projects (studies 1-3) in this
successful programme broke new ground in examining the decision-making
process underpinning consent to organ and tissue donation, and the needs
and experiences of family members before, during and after donation:
Study 1: The BODY study (2000-2003), led by Southampton (Sque and
Long-Sutehall), with Professor Sheila Payne (University of Sheffield), was
a UK wide three year study which identified factors impacting families'
decisions about agreeing or declining donation and what their specific
informational and support needs were over this time span [3.1].
Study 2: Southampton researchers (Sque, Long-Sutehall) with
Allardyce (Research Fellow, Southampton 2004-05) and Payne (Sheffield),
interviewed family members who had declined donation (2004-05). This
research found that the pre death wishes of the deceased regarding
donation did not `guarantee' agreement to donation; family members did not
articulate donation as `a gift of life' (a slogan often attributed to
donation), but as the sacrifice of an unmarked body to a potentially
mutilating operation. Inability to rationalize this conflict resulted in
family members declining donation [3.2].
Study 3: Linking to data from the BODY study, Long-Sutehall (PhD)
carried out a secondary analysis of primary data sets, examining families'
experience of the diagnosis of brain stem death (2004-2007). Findings
indicated that family members had a poor understanding of this medical
diagnosis, and that most struggled to accept that their relative was brain
stem dead in view of their relative looking `alive' and continuing to have
a heartbeat [3.3, 3.4].
In 2007, Long-Sutehall commenced a Consultancy role with NHS Blood and
Transplant (NHS BT) Tissue Services, leading on two studies (studies 4 and
5) aimed at exploring the factors that impact on the consent process for
multi-tissue donation (eyes, heart valves, bone, skin, tendons).
Study 4: The first UK evaluation of the experiences of family
members whose deceased relative underwent tissue retrieval at Tissue
Services' dedicated donation facility in Speke, Liverpool was carried out
in 2009. This ground-breaking study showed that families were very
satisfied with the service provide to them by specialist nurses, but that
they knew almost nothing about tissue donation, and were not alerted to
the potential of tissue donation by the hospitals where the death had
taken place. This was a factor prompting a decline of tissue donation
Study 5: Initial findings from this evaluation underpinned the
award of an NIHR Post Doc Fellowship for Long-Sutehall in 2010. This was
one of the first studies worldwide to investigate the `real time' approach
and consent process, involving analysis of recorded telephone
conversations and observation of initial approach conversations with
family members. Findings indicated, again, that family members knew little
about tissue donation, that they wanted to be asked fewer questions during
the consent-seeking conversation and that the current approach and consent
process was inhibiting the building of rapport with family members and
impacting on decision-making [3.6].
References to the research
Those articles marked with * are listed in the 2010 RCN survey of most
influential nursing research in the past 50 years. http://www.rcn.org.uk/development/researchanddevelopment/rs/nursing_research_top_50
*3.1 Long T, Sque M, Payne S. (2006) Information sharing: its
impact on donor and nondonor families' experiences in the hospital. Progress
in Transplantation, 16 (2): 144-14 http://www.ncbi.nlm.nih.gov/pubmed/16789705
3.4 Long T, Sque M, Addington-Hall J. (2008) What does a
diagnosis of brain death mean to family members approached about organ
donation: A review of the literature. Progress in Transplantation,
18: 118-126. http://www.ncbi.nlm.nih.gov/pubmed/18615977
3.5 Long-Sutehall T, Winstanley E, Clarkson A, Sque M. (2012)
Evaluation of the experiences of family members whose deceased relative
donated tissues at the NHS BT dedicated donation facility in Speke,
Liverpool. Cell Tissue Banking, 13 (4): 537-546 http://www.ncbi.nlm.nih.gov/pubmed/21785945
3.6 Ta ylor H, Long-Sutehall T, Whitehead J. (2012) Final report
Specialist Family Approach Audit, NHS BT — Tissue Services, (available at
1. Sque M and Payne S. The BODY study — Organ and tissue donation:
Exploring the needs of families Funder: British Organ Donor Society and
the Community Fund, 2000-2003 £162,640.
2. Sque M, Long T and Payne S. Organ and tissue donation:
Exploring the needs of families who did not donate. Funder: United Kingdom
Transplant. 2004-2005 £99,000.
3. Long T. Brain-based criteria for diagnosing death: What does
it mean to families approached about organ donation? Funder: Faculty of
Health Sciences, University of Southampton. 2004-2007 £82,000.
4. Long-Sutehall T, Anthony Clarkson and Sque M. Evaluation of
the experiences of family members whose deceased relative donated tissues
at the NHS BT dedicated donation facility in Speke, Liverpool. 2009-2010
5. Long-Sutehall T. Barriers to tissue donation: what cognitive
and emotional associations do bereaved family members bring to the multi
tissue and corneal request interview? National Institute Health Research
Post Doctoral Fellowship. 2010-2013 £297,422.
Details of the impact
Our research has had direct impacts on policy stipulating standards of
service to family members during and after solid organ and multi tissue
donation, the practice of health care professionals and care staff, the
care and experience of newly bereaved families in the context of organ or
tissue donation, and is contributing to raising public awareness of tissue
donation in particular.
Impact on policy
In 2012, in the light of findings from studies 4 and 5, Long-Sutehall was
part of a team that carried out a process evaluation of the current
documentation underpinning the consent process in both organ and tissue
donation for NHS BT. The evaluation recommended that `core minimal'
information be provided to family members when approached about tissue
donation, and information that is not essential be moved to other modes of
communication, such as Family Information Leaflets (FILs) and websites.
Both NHS BT and the Human Tissue Authority (HTA) accepted proposed
changes. Subsequent to this decision, Long-Sutehall led on the design of
the FILs which have been distributed to family members as of July 2013
(expected over 2,200 family members per year) [5.1a/b, 5.2]. Findings from
study 2 were cited in the guideline on Organ donation for
transplantation, issued by the National Institute for Health and
Care Excellence (NICE) in 2011. The aim of this guideline is to improve
donor identification and consent rates for deceased organ donation [5.3].
The House of Lords European Union Committee published its report on Increasing
the supply of donor organs within the European Union in July 2008.
The report quotes Sque and Long-Sutehall's witness statements to the
Committee, based on their research, on no fewer than 12 occasions [5.4].
Impact on Practice
As a result of her research expertise, NHS BT asked Long-Sutehall to
participate in updating the Donor Family Care Policy, and associated
Management protocol; these documents stipulate the required practice for
Specialist Nurses in Organ Donation [SN-OD] when in contact with potential
donor families. The revised documentation was completed in 2011,
reflecting findings from studies 1-3 [5.5]. Pilot testing of a new
specialist family approach format developed by Long-Sutehall using
findings from studies 4 and 5 has been demonstrated to increase donation.
It has now been implemented into practice. In 2010, Long-Sutehall
presented the findings from study 3 to the official advisory committee on
ethical, legal and psychosocial aspects of organ donation and
transplantation (ELPAT) of the European Society for Organ Transplantation
(ESOT) comprising 100 practitioners and researchers from 25 European
member states [5.6]. The incorporation of findings from studies 1-3 into
the Donor Family Care Policy 2011 (see above) has led to demonstrable
benefits for family members of potential donors. For example, since 2008
approximately 3,500 families have received a contact card from the
donation team on the first anniversary of their relative's donation, which
was a recommendation of the research. Families and support organisations
(British Organ Donor Society and Donor Family Care Network) have
acknowledged the importance of this contact [5.7]. As a result of findings
from studies 4 and 5, the Donor Assessment Form for NHS BT's Tissue
Services was re-designed in March 2013, reducing the number of questions
in line with families' expressed needs and wishes [5.8].
Improved public and practitioner awareness
To address the findings from studies 4 and 5, that family members were not
being `alerted' to the possibility of tissue donation by health care
professionals before a death occurred, the South Central Strategic Health
Authority (SHA) made an online resource available in 2010 for the public
and for health professionals [5.6]. Guidance to Care Home care staff
within the South Central region was also developed [5.9]. A recommendation
of study 4 was that a Donor Family Advisory Committee should be
established by NHS BT's Tissue Services so that new initiatives (e.g.
marketing strategies, information resources) aimed at increasing public
awareness of the need for tissue donation, are presented to this group for
discussion and review [5.10].
Sources to corroborate the impact
5.1 Endorsement e-mail [5.1a] from Dr Lorna M Williamson, Medical and
Research Director, NHS Blood and Transplant, and excerpt from Care
Committee of NHS BT [5.1b] (PDF)
5.2 Family information leaflets on eye. Organ and tissue donation
5.3 NICE guideline: http://www.nice.org.uk/nicemedia/live/13628/57508/57508.pdf
5.4 House of Lords European Union Committee, Increasing the supply of
donor organs within the European Union, published July 2008. Volume
I: Report. http://www.publications.parliament.uk/pa/ld200708/ldselect/ldeucom/123/123i.pdf
(Sque and Long-Sutehall quoted in paras 107, 132, 137, 146, 147, 246-248,
251, 254, 279, 305.)
5.5 Letter of endorsement from Dr Paula Aubrey, Chair of the Donor Family
Care Policy Committee 2010-2011, NHS Blood and transplant.
5.6 ELPAT presentation http://www.esot.org/Elpat/Content.aspx?item=122
5.7 Confidential copy of 2011 Donor Family Care Policy (pages 1-12)
5.8 Letter or endorsement from Emma Winstanley, Chair of Deceased Donor
Consent working party for NHS Blood and Transplant [2010-current].
5.9 PPP of SHA End of Life resource for health care professionals and the
5.10 NHS BT Tissue Services Deceased Donor Advisory Group Composition and
Terms of Reference (PDF).