Deceased Donor Organ Donation & Organ Sharing Network

Brain-dead donors (BDD) are the single largest source of transplantable organs. Families’ informed consent
to donate family members’ organs is always requested and is a determining factor in the success of organ transplantation.
The interview between the transplant coordinator (TC) and the family of possible organ donors requires specific
planning and methodology. The transplant coordination department at the Hospital de la Santa Creu i Sant Pau (HSCSP)
of Barcelona (Spain) has developed a Family Interview Guide (FIG) for requesting informed consent to organ donation for
transplantation from BDD. For the internal evaluation of the guidelines presented in this paper, the AGREE II (Appraisal of
Guidelines Research & Evaluation) instrument was used. We present our FIG to request organ donation and its assessment
with the AGREE II instrument by four medical specialists.
The FIG describes the process and content of the conversations surrounding the donation request. FIG was implemented
in 2011 and consists of the following 13 sections: planning, recommendations, professionals conducting the interview,
requestor’s attitude towards families, interview setting, timing of the interview, duration of the interview, requesting informed
consent, details of the donation process to the donor’s family, formalizing the agreement, donor documentation,
funeral arrangements administration procedures and psychological support for donor families. The main purpose of this
guide is to increase organ donation rates. From January 2011 to August 2012, 40 consecutive family interviews from 40
BDD were conducted using FIG. For the evaluation of this FIG the AGREE II instrument was used. This is a generic tool
designed primarily to assist designers and users of clinical guidelines in the assessment of their methodological quality.
The rate of family consent to organ donation for transplantation in the HSCSP after implementation of this FIG in 40 consecutive
family interviews was 100%. The assessment of this clinical guideline with the AGREE II instrument scored 71%.
The application of our guideline in face-to-face interviews with the families of potential brain-dead organ donors was a
success. The evaluation of our guide with the AGREE II instrument recommended its use in general clinical practice.

Purpose
– Organ donation and transplantation services represent a microcosm of modern healthcare organisations. They are complex adaptive systems. They face perpetual problems of matching supply and demand. They operate under fierce time and resource constraints. And yet they have received relatively little attention from a systems perspective. The purpose of this paper is to consider some of the fundamental issues in evaluating, improving and policy reform in such complex systems.

Design/methodology/approach
– The paper advocates an approach based on programme theory evaluation.

Findings
– The paper explains how the death to donation to transplantation process depends on the accumulation of series of embedded, institutional sub-processes. Evaluators need to be concerned with this whole system rather than with its discrete parts or sectors. Policy makers may expect disappointment if they seek to improve donation rates by applying nudges or administrative reforms at a single point in the implementation chain.

Originality/value
– These services represent concentrated, perfect storms of complexity and the paper offers guidance to practitioners with bio-medical backgrounds on how such services might be evaluated and improved. For the methodological audience the paper caters for the burgeoning interest in programme theory evaluation while illustrating the design phase of this research strategy.

This study aimed to analyse the effectiveness of implementation of a clinical guide for requesting family
informed consent to deceased organ donation for transplantation at the Hospital de la Santa Creu i Sant Pau (HSCSP).
From 1st January 2011 to 28th February 2013 there were 52 consecutive brain-dead patients at HSCSP. Fifty-two family
interviews took place requesting organ donation for transplantation. In all cases experienced hospital transplant coordination
staff performed the family interview. Transplant coordinator case reports are comprehensive records of clinical data
and the process of requesting donation in every family interview. Quantitative descriptive analysis was used to describe
the main features of the data. Free text items were analysed using content analysis focusing on contributing factors to
consent/refusal for organ donation. A retrospective case note review (secondary analysis) was carried out for 52 referrals
during this audit period. These were also compared with data from the period of 1994-2010 before the clinical guide
was implemented. Percentage difference of family refusal before and after clinical guide implementation was used in the
statistical analysis of data.
The percentage of family refusals before and after clinical guide implementation was 17.5% (95% confidence interval,
14.7 to 20.3) and 1.9% (95% confidence interval, 0.04 to 10.3), respectively, reaching statistical significance (p=0.001).
The implementation by experienced transplant coordination staff of a clinical guide for requesting family consent for
deceased organ donation significantly increased consent rates