An assessment of advance relatives approach for brain death organ donation

Abstract

Background:

Advance announcement of forthcoming brain death has developed to enable intensivists and organ procurement organisation coordinators to more appropriately, and separately from each other, explain to relatives brain death and the subsequent post-mortem organ donation opportunity.

Research aim:

The aim was to assess how potentially involved healthcare professionals perceived ethical issues surrounding the strategy of advance approach.

Research design:

A multi-centre opinion survey using an anonymous self-administered questionnaire was conducted in the six-member hospitals of the publicly funded East of France regional organ and tissue procurement network called ‘Prélor’.

Participants:

The study population comprised 460 physicians and nurses in the Neurosurgical, Surgical and Medical Intensive Care Units, the Stroke Units and the Emergency Departments.

Ethical considerations:

The project was approved by the board of the Lorraine University Diploma in Medical Ethics and the Prélor Network administrators.

Main findings:

A slight majority of 53.5% of respondents had previously participated in an advance relatives approach: 83% of the physicians and 42% of the nurses. A majority of healthcare professionals (68%) think that the main justification for advance relatives approach is the comprehensive care of the dying patient and the research of his or her most likely opinion (74%). The misunderstanding of the related issues by relatives is an obstacle for 47% of healthcare professionals and 51% think that the answer given by the relatives regarding the most likely opinion of the person regarding post-mortem organ donation really corresponds to the person opinion in only 50% of the cases or less.

Conclusion:

Time given by advance approach should be employed to help and enable relatives to authentically bear the values and interests of the potential donor in the post-mortem organ donation discussion. Nurses’ attendance of advance relatives approach seems necessary to enable them to optimally support the families facing death and post-mortem organ donation issues.

Keywords

Areas of practice clinical ethics intensive care organ donation presumed consent professional ethics topic areas

Introduction

Rapid deterioration of the haemodynamic condition occurs after brain death. Time is lacking for relatives to cope with the trauma of the death of their loved one and to concomitantly think about the request for organ harvesting for the benefit of others, that is, critically ill patients anxiously awaiting organs. This lack of time and time pressure has long been identified as a negative factor influencing family refusal.^1
–3

Besides, since futile care are prohibited or strongly disapproved in many countries, the possibility of non-therapeutic intensive care in order to wait for brain death and protect the patient’s organs for post-mortem donation purposes should be clearly presented and explained to the relatives.⁴

So, advance announcement of possible forthcoming brain death has been developed to enable intensivists and organ procurement organisation coordinators to more appropriately, and separately from each other, explain the whys and wherefores of brain death and its consequence in terms of organ-harvesting opportunity. Two issues are essential: the occurrence of brain death should be very likely and clinical staff should be confident that the family has come to terms with the loss of their loved one.⁵ Time given to the family by advance approach should enable them to understand brain death and organ donation, and the issues for potential recipients. It should also allow them the time needed to fully respect the values and the memory of their lost loved one. The shortcomings of this approach may be a loss of care objectives resulting from the difficulties faced by healthcare professionals in transitioning between curative care and care for organ donation. Interestingly, the ethical, psychological and sociological impact of these strategies remains poorly studied and even unknown. A first step is to ask for the opinion of the involved healthcare professionals.

Background

Post-mortem organ donation in France has been ruled by the presumed consent principle since 1976. A national opt-out register has been available since 1994 and the law stipulates that the organ procurement organisation should consult it and ask the family whether the person had expressed his or her opposition to post-mortem organ donation during his or her life, before starting a harvesting procedure. In daily practice, it seems that the relatives often feel entitled to consent or refuse post-mortem organ donation and that coordinating nurses do not want to go against them in case of refusal.^6,7

Advance approach of the relatives by an organ procurement organisation coordinating nurse whenever evolution towards brain death is likely has been recommended by the Agence of Biomédecine – the French organ procurement organisation – since 2007.⁸ Whenever a patient’s condition is at high risk of evolution towards brain death, the intensivist must contact the organ procurement organisation coordinator to enable him or her to correctly examine the case. When it is deemed timely, the intensivist meets the patient’s relatives with the organ procurement organisation coordinator. The intensivist informs the relatives of the probability of fatal outcome by brain death. Then, the organ procurement organisation coordinating nurse presents them the issues related to organ donation in case of brain death. Relatives are asked whether the person had previously expressed an opinion on post-mortem organ donation. If not, this advance approach will give them more time to understand what brain death is and think about the values and the most likely answer of their loved one to the question of post-mortem organ donation.

Participants and methods

Aim

The aim of our study was to assess the perception of healthcare professionals on some important ethical issues surrounding the strategy of advance approach of relatives for post-mortem organ harvesting in hopeless brain-injured patients progressing to brain death. We assumed that the results could be of value to try to improve both theoretical recommendations and daily practice.

Design of the study

A multi-centre opinion survey using an anonymous self-administered paper questionnaire was conducted in the six-member hospitals of the publicly funded East of France regional organ and tissue donation procurement network called ‘Prélor’.

Participants

Inclusion criteria were as follows: all the healthcare professionals of the Prélor Network involved in the family interviews, that is, 460 physicians and nurses, were invited to take part in the survey. The involved wards were the Neurosurgical, Surgical and Medical Intensive Care Units, the Stroke Units and the Emergency Departments. The paediatric wards were excluded from the study. Healthcare professionals were informed and requested to take part in the study by a letter on the official notice board of each ward.

Ethical considerations

The project was approved by the board of the Lorraine University Diploma in Medical Ethics and the Prélor Network administrators. A letter explaining the survey was sent to the nursing and medical heads of each ward to obtain their permission for the research to be locally carried out.

Methods

The questionnaire was first drafted by a staff nurse of the Organ and Tissue Procurement Unit of the Nancy University Hospital as part of her diploma in medical ethics. Since the potential donor is still alive while advance approach takes place, the Beauchamp and Childress four principles of medical ethics – respect for autonomy, beneficence, non-maleficence and justice – have been included in the survey. This first version was tested by three doctors and three nurses and then revised to improve the content and the clarity of the questions. The questionnaire with 10 multiple-choice questions was made available in the resting rooms of the different wards between June and August 2015 (Appendix 1).

The data were collected and cross-checked by a nurse and a physician, and analysed using Microsoft Excel^® software.

Results

Of 459 healthcare professionals, 179 completed the questionnaire, representing 39% of the targeted population. The composition of the respondent subpopulation was as follows: nurses, 73%; physicians and residents, 27%. These proportions match those of the population investigated. Because of the small number of residents in the responders’ population, the results of physicians and residents were merged.

A slight majority of 53.5% of respondents had previously participated in an advance relatives approach for post-mortem organ donation: 83% of the physicians and 42% of the nurses.

The majority of the population (68%) thought that the reasons to initiate an advance family approach for post-mortem organ donation were for the comprehensive care of the patient, the other reasons being to comply with the procedures (43%), because of the unstable patient’s condition (43%), and because of the lack of beds in the ward (7%).

To the question ‘In your opinion, advance family approach is’, the healthcare professionals responded as follows: the search for the respect of patient’s opinion (74%), a required procedure (61%), an imperative to increase the number of available organs (45%), a caregiving process (37%), an attempt to make the death useful (35%), a withdrawal of treatment in the public interest (33%), a form of violence imposed on the relatives (11%) and an obstacle to palliative care (7%) (Figure 1).

Figure 1.

‘In your opinion, advance family approach is’.

The difficulties in this approach were considered to be: the absence of any statement by the person (57%), the emergency setting (52%), the misunderstanding of the relatives (47%), a disagreement among the relatives regarding future care (45%), the uncertainty regarding progress towards brain death (42%), the uncertainty regarding progress towards death (37%), the risk of later discovering a contraindication to organ donation (31%), a disagreement among the healthcare professionals (24%) and the inability to consult the National Refusal Register before death (21%) (Figure 2).

Figure 2.

‘In your opinion, what are the difficulties in this approach?’

Regarding the emotions they usually feel during advance family approach, they responded compassion for 60% of them, respect for 46%, fear for 11% and anxiety for 13%.

If they could have done some of the family interviews all over again, a significant proportion of the respondents (43%) would have done them differently.

When they were asked about their experience concerning the presumed consent principle in an advance relatives approach, they responded as follows: avoids putting the decision on the relatives (66%), prevents conflicts among the relatives (57%), is the best solution to respect individual autonomy (45%), is illusory and unrealistic because the opinion of the family remains essential (25%), is utopian because few people have reflected on their death and organ donation (24%), spares the relatives the risk of regretting a refusal decision (24%) and is the most appropriate answer to meeting the needs of patients awaiting an organ (23%) (Figure 3).

Figure 3.

‘From your experience, presumed consent principle in an advance relatives approach’.

A high proportion of healthcare professionals (49%) believed that 25% of patients have expressed their choices regarding post-mortem organ donation, then 21% of healthcare professionals responded 50%, 4% responded 75%, and 24% had no idea about the answer.

To the important question of whether or not the answer given by the relatives regarding the most likely opinion of the person regarding post-mortem organ donation really corresponds to the person’s will, half of the healthcare professionals stated that it corresponded in 50% or less of the cases, while a small proportion of healthcare professionals (23%) said that in a large majority of cases (75% or more), they were satisfied that the answer given by relatives corresponded to the person’s will, 26% having no idea of the answer.

To the question about the prerequisite to the continuation of the organ donation procedure in the absence of the person’s statement, the answers were as follows: the respect of the freedom of the patient and that of his or her relatives to refuse organ donation (65%), the law enforcement (48%), the approval of the relatives (32%) and the primary interest regarding the right to life of the potential receivers (25%).

Regarding practical experience, it appears that most physicians (83%) have already taken part in advance family meetings. Less than 45% of the nurses have attended them. The comparison between participants and non-participants in relatives advance approach did not show any significant differences.

Comparisons between nurses and physicians showed some noteworthy differences. To the question no. 3 on what they think advance approach is, nurses were more prone to answer ‘the search for the respect of patient’s opinion’ and ‘a caregiving process’, whereas physicians answered ‘an imperative to increase the number of available organs’ and ‘a required procedure’ first. Regarding the difficulties encountered (question no. 4), nurses responded ‘a disagreement in the relatives’ significantly more often than physicians. Regarding their experiences of advance approach (question no. 7), physicians responded ‘is the best solution to respect individual autonomy’ more often than nurses.

Discussion

Ethical priorities

For 65% to 75% of the respondents, the respect of the potential donor’s autonomy and that of his or her relatives is the first prerequisite to an advance approach for post-mortem organ donation. But regarding the relatives, they differentiate between respecting the veto of the relatives and seeking for their approval. Not surprisingly, healthcare professionals clearly favoured the search to respect autonomy as well as the beneficence and non-maleficence to the potential organ donor over and above distributive justice and the instrumentalisation of the potential organ donor for the benefit of potential recipients. For them, advance approach of the relatives for possible post-mortem organ donation should keep the patient at the centre of his or her care and post-mortem organ donation should be beneficial to the memory of the patient. Furthermore, they seem to endorse an enlarged view of the principles extended to the relatives. The comparison between nurses and physicians suggests that physicians are more aware than nurses of the collective interests and public health–related issues of post-mortem organ donation. Nurses seem to give higher priority to individual ethics and the protection of the potential donor’s interests.

Relatives’ involvement

Our results are congruent with those of Neades⁶ and Rosenblum et al.,⁷ clearly demonstrating that despite presumed consent legislation, families are always involved in the decision to accept or reject their deceased relative as an organ donor. The key problem is that 51% of the respondents seem to think that in more than 50% of the cases, relatives’ answer does not reflect the true potential donor opinion. Furthermore, it is often impossible to distinguish the family’s views on organ donation from that of the potential donor in the absence of evidence of ante-mortem expressed wishes.⁶

Healthcare professionals’ practical apprehension of presumed consent

Despite the fact that presumed consent is of a legal nature, healthcare professionals favoured the research of the most likely individual’s opinion and see presumed consent as a means to prevent additional suffering and conflicts for the relatives and, to some extent, as the probabilistic respect of the person’s autonomy.

So, in an advance approach, reminding the relatives of the presumed consent rule could be the starting point of the discussion about the necessity for them to consider, guess and testify the most likely opinion of the person regarding organ harvesting/donation with regard to his or her life history and values.

Difficulties for healthcare professionals

Difficulties first arise from the absence of a statement expressing the wishes of the person. Advance approach could be made more difficult as brain death and issues regarding post-mortem organ donation remain generally poorly known by the general population⁹ and even by a significant proportion of healthcare professionals.¹⁰ Failure of families to understand brain death remains a cause of organ donation refusal.¹¹ This point is of particular importance during the advance approach at a moment when their relative is not brain dead and when confidence between healthcare professionals and the family may be broken. So, in our survey, a significant number of healthcare professionals would have done some of the families’ interviews again to improve them. This highlights the necessity to appropriately train the healthcare professionals involved to enable them to optimally meet the relatives’ needs and to use modern tools of training like video recordings or simulation.^10,12

Ethics and emotions

Asking the family about donating organs when the patient’s death is inevitable is morally distressing.^13,14 Indeed, the value that we attribute to the great principles of ethics is revealed to us through intense emotions or feelings.¹⁵ Emotions, such as compassion or fear, and feelings, such as respect or justice, are affective experiences, which inform the agent about the value of the ethical principles.¹⁵ In our study, the most frequent emotion is compassion, followed by respect. For Le Coz and Tassy,¹⁵ compassion makes us sensitive to the principle of beneficence, and feeling of respect for other reminds us how much we value autonomy. Similarly, fear makes us sensitive to the principle of non-maleficence, and anxiety to the risk of sacrificing a deeply held value.¹⁵

Ethics and law

The dissonance found by Neades⁶ between the legislation and its interpretation by healthcare professionals is confirmed in our study. Nursing ethics is first and above all a pragmatic applied ethics, aiming at negotiating the concrete moral challenges encountered in each singular case of the daily practice.¹⁶ However, at the societal level, the law is intended to try to ensure equal access to the best healthcare for all and to safeguard public health interests, and therefore, it inevitably prioritises collective over individual ethics. However, ethics is not law and law is not ethics, and tensions can sometimes arise between these two faces of the same coin regarding the defence of the individual and the defence of societal interests.

Study limitations

The survey participation rate was quite low (39%). The method chosen to recruit participants could at least partially explain this weak participation. An individual invitation letter or mail could have been more effective to prompt participation. Our survey has been conducted in a specific French context. So, the transferability of its conclusions could be questionable. However, the results encompass values and issues universally entailed by post-mortem organ donation.

Conclusion

Given that more than 75% of French people are in favour of post-mortem organ donation for themselves, presumed consent could be the best way to probabilistically honour the opinion of the person if it remains unknown at the end of her life. However, the healthcare professionals in this survey seem to think that relatives remain the bearers of the potential post-mortem donor’s values and autonomy and the guardian of his or her interests and memory. Therefore, the key role of relatives in the confirmation of presumed consent and the validation of post-mortem organ harvesting cannot be denied.

For two-thirds of respondents in this study, advance approach, first and foremost, enables healthcare professionals to have more time to help relatives to seek for the most likely opinion of the dying person regarding organ donation. The message of these healthcare professionals could be: first, respect and protect the dying person. Then, even in a presumed consent regimen, they seriously consider post-mortem organ donation with those of his or her relatives bearing his or her values and guarding his or her interests and his or her memory. It seems that healthcare professionals would indeed remain beneficent for the potential donor as well as for the potential receiver in their attempt to reconcile collective with individual ethics. Nurses are often closer to relatives than physicians and their role in the daily families’ support is critical. So, the participation of the potential donor’s nurses to the relatives’ advance approach is necessary to enable them to understand all the particular post-mortem organ donation–related issues and adequately support the relatives during these extremely distressful days.

Advantage should be taken of the time given by advance approach to genuinely empower relatives to authentically be the dying person’s voice in the decision-making process, that is, to enable them to bear the true values and interests of the potential donor – including those related to collective ethics issues. So, there is a need to develop professional tools in this field.

Furthermore, this field study highlights the fact that nursing ethics is, above all, a pragmatic applied ethics which can sometimes have a critical view of, and indeed disagree with, official approaches and even law.

Footnotes

Acknowledgements

The authors deeply thank all healthcare professionals for their participation in this survey, Mrs Carole Simon, for her advice, and Mrs Pascale Cartron, for her invaluable proofreading.

Conflict of interest

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship and/or publication of this article.

Appendix 1

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