Advance Directives and Consent to Organ Donation in Seven University Hospitals in North Rhine–Westphalia

A retrospective, multicenter analysis

According to a representative survey of the Federal Centre for Health Education (BZgA), 71% of the German population would consent to organ donation (1). Nonetheless, German donor numbers are low in the international comparison (11.22 donors per 1 million population; Spain, 40.2/1 million) (2). The present study investigates whether the consent rate differs according to whether a potential organ donor decides for themselves during their lifetime or whether the decision is made by relatives. The aim is to analyze the effect that the decision basis (advance directive, presumed will, unknown will) has on the consent rate.

Method

We retrospectively included all potential deceased organ donors who were identified in the university hospitals in Aachen, Bielefeld, Bonn, Düsseldorf, Essen, Cologne, and Münster between 1 June 2020 and 30 June 2021. According to the guideline of the German Medical Association for donor identification, a person was considered a potential deceased organ donor if they had received intensive care and been ventilated after a primary or secondary brain injury, the doctors considered them as suitable for organ donation; and irreversible loss of brain function was imminent, was presumed to have occurred, or had been confirmed. The completeness of the study cohort was confirmed by means of the computer program DSO Transplantcheck, made available by the German Organ Procurement Organization (DSO, Deutsche Stiftung Organtransplantation). This program identifies all deaths with a brain injury from patient data according to § 21 of the hospital remuneration act. The primary target parameter was consent to organ donation; the influence of the basis of the decision was also recorded. To this end, relatives, carers, and general practitioners were asked for the advance directives of the potential deceased organ donors, and all available documents were viewed. The study received ethics approval (file number 2021–801-f-S) and was registered with the German Clinical Trials Register (DRKS-ID: DRKS00027854). The statistical analysis was carried out using SigmaPlot 14.0 (Systat Software Inc, USA). We used chi square (χ2) tests to analyze the rate of consent to organ donation depending on the decision basis and after Bonferroni correction for multiple (fivefold) testing defined the significance level as α=1%.

Results

In the period under observation, a total of 300 potential deceased organ donors aged 60±20 years (mean with standard deviations) were identified—148 women and 152 men. In 10 cases, it was not possible to reach a decision-maker, and in one case the approval of the public prosecutor was not given. This meant that 289 cases were available for the further analysis. Consent to organ donation was given in 110 cases (38%). Of 43 persons with an advance directive, 30 consented, and among the remaining 246 cases (without advance directive), 80 consented. The advance directive was therefore associated with a significantly higher consent rate (70%). If the patient’s will was expressed in writing or verbally, the consent rate was also higher (49%) than if the patient’s will was unknown (33%), although this effect was no longer significant after Bonferroni correction. If relatives had to decide on the basis of their own values, the consent rate was 10% and was significantly lower than for other decision bases (46%) (Figure). The consent rate was higher for male potential deceased organ donors—42%—than for female ones (31.1%), but this difference did not reach significance (p=0.32).

Figure

Comparison of consent rates by basis of decision-making

Table

Basis for decision and consent rate in the cohort

Discussion

Consent rates were similarly high (70%) as in surveys of the BZgA (71%) only where a written advance directive existed (1). The consent rate fell to 49% if all persons with a written or oral advance directive were considered and to 10% if relatives had to decide on the basis of their own values. The question of whether the relatives in these cases objected to organ donation on the basis of their own convictions or because they interpreted the absence of an advance directive from the potential deceased organ donor as meaning that the deceased would have objected to organ donation, cannot be answered on the basis of our data.

In BZgA surveys, 44% of participants documented their decision regarding organ donation in writing (1), whereas in our cohort only 14% did so. It is possible that the BZgA-survey results are representative for the total population but not for the population investigated in this study (for example, as a result of differently represented age groups). Furthermore, there are indications that survey results do not necessarily represent the actual attitudes of the survey participants. Especially for topics as sensitive as organ donation, non-committal responses may favor a suspected social desirability (3).

As the proportion of potential deceased organ donors with written advance directives was low in this cohort, the decision was mostly down to relatives. They mostly objected to organ donation. This is not necessarily in contradiction to survey results as different decision-makers were asked (in surveys, survey participants decided themselves; in our cohort, the decision was mostly made by relatives instead of potential deceased organ donors. Knowledge/awareness of a person‘s attitude towards organ donation is one of the most important factors for consent given by relatives. If this is not known the consent rate is lower (4).

A limitation lies in the fact that in a subject as difficult as decision-making regarding organ donation, relevant factors of influence were probably not completely captured (for example, religious affiliation). We cannot rule out either that a potentially consenting advance directive was not documented because of missing information. Data were collected only from university institutions in North Rhine-Westphalia (NRW). The results might not be representative since donor numbers differ by region and hospital service/care levels (5).

The present results may explain why the solution used in Germany for making decisions might contribute to the low donor numbers. As long as this is in use, a written advance directive should be requested during a person’s lifetime in order to increase the numbers of organ donations. This is also the intent of the legislature, which passed a law in March 2022 to support people´s willingness to make a decision. If as a result more advance directives are made, organ donation numbers in Germany may rise over the long term.

Acknowledgment

We thank all transplant coordinators in North Rhine-Westphalia‘s university hospitals for their active/practical support in carrying out this study. We also thank Dr Leonie Weinhold from the Institute of Medical Biometry, Medical Informatics, and Epidemiology at Bonn University, for providing statistical advice.

Conflict of interest statement
The authors declare that no conflict of interest exists.

Manuscript received on 18 August 2022, revision accepted on 28 October 2022.

Cite this as:
Englbrecht JS, Schrader D, Kraus H, Schäfer M, Schedler D, Bach F, Soehle M: Advance directives and consent to organ donation in seven university hospitals in North Rhine–Westphalia—a retrospective, multicenter analysis.
Dtsch Arztebl Int 2023; 120: 133–4. DOI: 10.3238/arztebl.m2022.0367

References

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2. International Registry in Organ Donation and Transplantation: Preliminary numbers 2021. www.irodat.org/img/database/pdf/Irodat%20June%202022_definitiva_final.pdf (last accessed on 19 October 2022).

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