... hospital coordination tions are carefully managed, with development of ... Close network dedicated to organ procurement each year is. $2999999. This figure ...
Nephrol Dial Transplant (1999) 14 [Suppl 3]: 15–21
Nephrology Dialysis Transplantation
Organ donation in Spain B. Miranda, M. Ferna´ndez Lucas, C. de Felipe, M. Naya, J. M. Gonza´lez-Posada and R. Matesanz Organizacio´n Nacional de Trasplantes, Madrid, Spain
Background Spain is a European Community country with 39.66 million inhabitants divided into 17 autonomous regions. The National Health System (NHS ) is comprised of all the facilities and public services devoted to health. The Health Counsellors from each autonomous region form the Interterritorial Council for the NHS. This body is presided over by the Minister of Health and Consumer Affairs and is in charge of the coordination of health policies. Today, public health assistance is available for 99% of the population. The Spanish transplant story, however, started in 1965 when the first renal grafts were performed in Barcelona and Madrid. The transplant legislation approved by Parliament in 1979 is technically similar to the corresponding laws in other western countries. Brain death is defined as ‘the total and irreversible loss of brain function’ and must be certified by three doctors (one of whom is a neurosurgeon or neurologist) unrelated to the transplant teams. Signs of brain death must be explored clinically and documented by a silent EEG for 30 min, and these tests must be repeated twice at an interval of no less than 6 h. The diagnosis is valid unless the patient is hypothermic or exposed to drugs with known brain-depressive action. Organs may be retrieved only after obtaining informed consent from the donor’s family. The law also states that no compensation may be paid either for donation or for grafted organs. After the law was approved, the transplant activity using cadaveric organs increased progressively during the 1980s. After a peak of 1182 kidney grafts in 1986, the number decreased by 20% and the annual number of renal transplants plateaued at ~1000 during the rest of the decade, leading to an exponential growth of the waiting list.
attached to the Spanish Department of Health. From the very beginning, it was presumed that the shortage of organs is the principal limitation to organ transplant and that the problem was probably not the absence of suitable donors but a failure to convert potential into real donors. Donation/transplantation is a complex process involving different steps, which cannot be left to evolve in isolation ( Figure 1). The ONT emphasized the need for one person or a group of a few persons to be responsible for the organ and tissue procurement at each hospital. The national transplant coordinating network was then conceived, at three different levels: national, regional and local or hospital. The development of the network has been described elsewhere. The ONT has developed a formal but flexible management structure, which ensures that the transplant coordinators who work at the ‘grass roots’ have a sense of involvement and accountability for performance. Most coordinators are qualified doctors, mainly intensive care specialists or nephrologists who are dedicated part-time to transplant-coordinating tasks. In 1989, there were scarcely 25 transplant coordinating teams in Spain, but now 139 teams are active, one in each hospital with the potential for organ donations. The profile of the Spanish transplant coordinator is summarized in Table 1. The coordinators report directly to the hospital medical director and not to the chief
Development of the network In September 1989, the Organizacio´n Nacional de Trasplantes (ONT ) was created as an organization Correspondence and offprint requests to: Dr B. Miranda, Organizacio´n Nacional de Trasplantes, C/ Sinesio Delgado no. 8, 28029 Madrid, Spain.
Fig. 1. Steps in the donation and transplantation process.
© 1999 European Renal Association–European Dialysis and Transplant Association
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Table 1. Profile of the Spanish transplant coordinator Qualification Dedication: Report to: Origin: Continuity Location: Main aim: Increasingly involved in:
Physicians and nurses Part-time Hospital medical direction Intensive care unit Temporary (3–4 years) Within the hospital Organ procurement Educational programmes Resource management Relations with mass media Administrative tasks
of the transplant unit. They are increasingly involved in administrative tasks and in relations with social groups other than those directly involved in hospital affairs but which could have potential influence on transplant activity and organ procurement. Media relations are carefully managed, with development of educational programmes specifically designed to offer the transplant coordinators the best strategies for transmitting messages to media professionals. Close contacts and successful collaboration are also made with patient associations, judges, coroners and other social groups indirectly related to organ donation. The main aim of all ONT professionals and transplant coordinators in Spain is organ procurement. In this setting, the central office of the ONT acts as a service agency. It deals with organ sharing and arranges transport of organs or transplant teams, and it also maintains the waiting lists and registries of transplant activity. It elaborates and updates the official statistical data and keeps interested groups informed. It maintains an open telephone line working 24 h a day, 7 days a week, to answer any doubts or questions about organ procurement or transplantation. The direct link between the ONT and the Spanish Department of Health enhances the flow of information to the health authorities about any problems or other subjects related to transplant activity. Lastly, the ONT is the support agency for the organ and tissue procurement and transplantation process in Spain, both at the hospital and suprahospital levels, guaranteeing the transparency of the entire process. The development of committees to enable discussion of matters of transparency and possible conflicts, with Health Authorities and transplant representative teams, has been very important. These committees ensure compliance with all previously agreed regulations in matters such as organ distribution, criteria for inclusion in waiting lists, etc. Transplant coordination is a new discipline, which is still evolving. The great ‘boom’ in transplants did not occur until well into the 1980s, and the need for a system of coordination was not apparent until some time later when the growing complexity of the transplant process became obvious. The functions of the professionals dedicated to the retrieval and distribution of organs for transplant are not clearly defined. The role of the transplant coordinator must be learned, and the ONT has promoted the development of train-
ing programmes for health professionals, especially those involved in organ retrieval, including all the steps involved in the process (Figure 1). These range from how to draw up a registry of potential donors, to the way to approach the grieving families, and include donor maintenance, diagnosis of brain death, etc. These training programmes include both general intensive courses and smaller single-subject seminars, e.g. those dedicated to ‘general managing strategies’, ‘donation interview’, ‘relations with the mass media’, etc.
Organ and tissue donation budget The network dedicated to organ procurement in Spain is divided into three levels of coordination: national (one central office), regional (17 Autonomous Communities) and local (139 hospital coordination teams). The main functions of the central office are summarized in Table 2. The overall budget for the network dedicated to organ procurement each year is $2 999 999. This figure includes salaries, the administrative budget and training courses. The payment model of coordinating teams is different within Regional Areas, but most of them are paid according to organ procurement activity per year Following a dialysis and renal transplant cost study performed in the Basque country [1], we can estimate that the 10 000 renal transplant recipients now living in Spain with a functioning kidney graft represent an approximate saving of $207 000 000 each year. If the annual number of kidney transplants performed in Spain had continued at ~1180, the estimated savings would be considerably bigger. The transplants since 1980 have saved $50 000 000 of the overall renal replacement therapy budget. The estimation of other benefits following other types of solid organ or tissue transplants still remains much more difficult to evaluate.
Organ donor evolution Since 1990, when the basic human infrastructure was developed to identify potential donors and obtain organs, the number of donors has risen progressively ( Figure 2). The proportion of multi-organ retrieval soared from 30% in 1989 to 77% in 1994, and has been maintained at ~80% since then, producing a 2-fold rise in possible solid organ transplants and a decrease in the total solid organ waiting lists since 1991 (Figure 3). We have observed some variations in the characteristics of organ donors. Their average age has been increasing each year, making a difference of 11 years between 1992 and 1998 (from 34.5±17 to 45.4±19.8 years). More than 25% of our current donors are above 60 years of age. Although classically the most frequent source of potential donors was patients with cranial trauma, Spain has recently seen a reversal in the proportions of deaths caused by trauma and by
Organ donation in Spain
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Table 2. Central Office of the Organizacio´n Nacional de Trasplantes. Ministry of Health Address Staff Schedule Functions
(A)
(B)
(C )
(D)
(E) (F) (G)
Sinesio Delgado,8, 28029 Madrid Telephone: (91) 314 24 06 (12 Lines) Fax: (91) 314 2969/2956 National Coordinator Health Care Professionals: 5 doctors, 8 ATS Administrative Staff: 4 24 h a day (during the whole year) Coordination Extrahospital coordination of muti-organ extractions Updating and maintenance of the waiting lists for transplantation of liver, heart and lung Cooperation in renal interchanges Coordination of the air/land transportation of transplant teams and organs for transplant. Cooperation in the transplant of patients if necessary Channelling of reports of patients for pre-transplant evaluation Channelling of requests for pieces of bone or other tissues Channelling of reports for searches for bone marrrow donors Rules and Reports Elaboration of any technical report related directly or indirectly to the transplant of organs and tissues and haematopoeitic progenitors, requested by the competent health authorities Promotion Agreements and Consensus Studies Gathering of data about extract and transplant activity. Elaboration of same. Publications Evaluation of health requirements: legal, human and material Promotion and contribution. Multi-centre studies and research projects Information and Diffusion About transplant activity and topics of health interest: Health administration Transplant coordinators Transplant professionals European and American transplant organizations Patient associations Public information in general: Campaigns of social sensitization Issuing of donor cards Telephone information about any doubts regarding donation and transplants (24 h a day) Diffusion of informative, didactic and working material, between the professionals of coordination and transplant Elaboration and diffusion of audio-visual material/Spanish transplant journals Participation in continued training courses and postgraduate courses, as well as summer courses in Universities Promotion of specific training courses Spanish Society for the Donation of Organs and Tissues. Collaboration International cooperation
Fig. 2. Effective cadaveric donors in Spain by number and annual rate (pmp).
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Fig. 3. Waiting list for solid organ transplantation in Spain (1991–1998).
cerebrovascular accidents (CVA) among organ donors. In 1992, cranial trauma caused 52% of their deaths (43% road traffic trauma and 9% other trauma) and CVA accounted for 39%. In 1998, the corresponding figures were 37 and 53.5% respectively and, moreover, only 25% of all donors died of injuries due to road traffic accidents. These changes are directly related to the 40% reduction in fatal road traffic accidents since the enactment of a new Road Security Law in June 1992. Table 3 shows the annual average of donors and the average index of donors/100 hospital beds in each type of hospital. Type I hospitals (transplant and neurosurgery units) accounted for the largest number of donors, but the percentage increase observed was higher in the other types, II and III (neurosurgery but no transplant unit/neither neurosurgery nor transplant units): 100 and 300% respectively, vs 50%. It is very important to point out that this index is within the range of the estimated theoretical capacity of donation in hospitals of types II and III (1.3–2.2 and 0.3–0.7, respectively) but not in hospitals of type I which are below the theoretical capacity of 3–4 donors/100 hospital beds [2]. In 1989, hospitals without a transplant unit provided 24.7% of all donors. This percentage increased to 33% in 1996 (P
