Original Manuscript
Non-therapeutic intensive care for organ donation: A healthcare professionals’ opinion survey
Nursing Ethics 1–12 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733014558969 nej.sagepub.com
Ste´phanie Camut University Hospital, France
Antoine Baumann University Hospital, France; Ethos EA 7299, Universite´ de Lorraine, France; Comite´ de Re´flexion Ethique Nance´ien Hospitalo-Universitaire, France
Ve´ronique Dubois University Hospital, France; Comite´ de Re´flexion Ethique Nance´ien Hospitalo-Universitaire, France
Xavier Ducrocq University Hospital, France; Ethos, EA 7299, Universite´ de Lorraine, France; Comite´ de Re´flexion Ethique Nance´ien Hospitalo-Universitaire, France
Ge´rard Audibert University Hospital, France; Comite´ de Re´flexion Ethique Nance´ien Hospitalo-Universitaire, France
Abstract Background and Purpose: Providing non-therapeutic intensive care for some patients in hopeless condition after cerebrovascular stroke in order to protect their organs for possible post-mortem organ donation after brain death is an effective but ethically tricky strategy to increase organ grafting. Finding out the feelings and opinion of the involved healthcare professionals and assessing the training needs before implementing such a strategy is critical to avoid backlash even in a presumed consent system. Participants and methods: A single-centre opinion survey of healthcare professionals was conducted in 2013 in the potentially involved wards of a French University Hospital: the Neurosurgical, Surgical and Medical Intensive Care Units, the Stroke Unit and the Emergency Department. A questionnaire with multiplechoice questions and one open-ended question was made available in the different wards between February and May 2013. Ethical considerations: The project was approved by the board of the Lorraine University Diploma in Medical Ethics. Results: Of a total of 340 healthcare professionals, 51% filled the form. Only 21.8% received a specific education on brain death, and only 18% on potential donor’s family approach and support. Most healthcare professionals (93%) think that non-therapeutic intensive care is the continuity of patient’s care. But more than 75% of respondents think that the advance patient’s consent and the consent of
Corresponding author: Antoine Baumann, Hoˆpital Central, University Hospital, 29, avenue du Mare´chal de Lattre de Tassigny, 54000 Nancy, France. Email: [email protected]
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the family must be obtained despite the presumed consent rule regarding post-mortem organ donation in France. Conclusion: The acceptance by healthcare professionals of non-therapeutic intensive care for brain death organ donation seems fairly good, despite a suboptimal education regarding brain death, non-therapeutic intensive care and families’ support. But they ask to require previously expressed patient’s consent and family’s approval. So, it seems that non-therapeutic intensive care should only remain an ethically sound mean of empowerment of organ donors and their families to make post-mortem donation happen as a full respect of individual autonomy. Keywords Elective ventilation, ethics, non-therapeutic care, nursing, organ donation, presumed consent
Introduction Non-therapeutic intensive care (NTIC) also called ‘elective ventilation’1 is provision of intensive care for a patient who is thought not to be able to benefit from it, in order to protect his/her organs for donation purposes.2 NTIC covers two different types of situations: patients definitely evolving towards brain death and patients suitable as controlled non-heart-beating organ donors after life-supporting therapies have been assessed as futile and withdrawn.2 Practically, its interest is to increase the number of organ donation.3,4 NTIC initiative targets principally patients with severe neurovascular injury considered inappropriate for surgical intervention or active support, but who are then intubated and ventilated ‘at the point of death’ and supported in anticipation of progression to brain death.
Background Post-mortem organ donation in France is ruled by presumed consent principle and a refusal national register (opt-out) is available. NTIC after hopeless stroke has been deemed to be ethically acceptable under some specific conditions for the two modalities – brain death and non-heart-beating2,5–7 – and controlled nonheart-beating organ donation (Maastricht III type) is presently being examined while not yet lawful. Despite this statement, the acceptance by all potentially involved healthcare professionals seems critical.8 Indeed, it has been stated that health policies and strategies can be sensibly implemented only if we allow for more than morality and legality.8 Particularly, to avoid backlash, it is essential that due attention be paid to the actual acceptability of NTIC to obtain endorsement by professionals who will be required to work under such policies.8,9
Participants and methods Aim The aims of our study were to investigate the feelings and the acceptance by healthcare professionals of NTIC for brain death organ donation and to assess their training needs. We assumed that the findings could be of interest for the implementation of NTIC for organ donation policies in many other countries. 2
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Design of the study A single-centre opinion survey using an anonymous questionnaire was conducted by a staff nurse in the potentially involved wards of the University Hospital of Nancy, France: the Neurosurgical, Surgical and Medical Intensive Care Units (ICUs), the Stroke Unit and the Emergency Department.
Participants Physicians, nurses and nurses’ aides were requested to participate in the survey. Because nurses’ aides are very close to patients during washing and comfort care, use to cater for families visiting their loved ones in our institution, comfort them and often discuss with them in a more informal and free way than doctors and nurses do, their opinion appeared to be very pregnant.
Ethical considerations The project was approved by the board of the Lorraine University Diploma in medical ethics. The nursing and medical heads of the different wards also gave their approval for the research to be carried out.
Methods A first version of the questionnaire was drafted by a staff nurse of the Neurosurgical ICU for her diploma in medical ethics. This first version was revised by her head nurse and by several physicians of different wards targeted by the survey. A test run was conducted with a few nurses and nurses’ aides to improve the matter and the clarity of the questions. As controlled, non-heart-beating donation is not yet permitted in France, NTIC was defined at the top of the form as the fact to provide intensive care to a patient in a hopeless condition for whom a decision to withhold or withdraw futile vital support has been made, because of probable progress towards brain death and therefore towards potential organ donation. This may include ICU transfer from a standard care ward or the Emergency Department and intubation of a patient in hopeless condition only for organ preservation purpose. The questionnaire with 13 multiple-choice questions and one openended question was made available in the different wards between February and May 2013. The data were collected and analysed using the Sphinx Declic1 software (Le Sphinx De´veloppement, France).
Results Out of a total of 340 targeted healthcare professionals, we obtained completed questionnaires from 174, representing 51% of the population. The composition of the respondent sample was as follows: nurses, 53.4%; nurses’ aides, 23.6%; physicians, 17.2%; anaesthesia and intensive care residents, 5.2%; and other specialties residents, 0.6%. These proportions roughly match the composition of the population investigated. Because of the small number of residents, the results of physicians and residents were merged. Tables 1 and 2 present the characteristics of respondents. An overwhelming majority of 93.7% of respondents had previously taken part in an organ donor care and 95% attest that NTIC is sometimes decided or performed in their wards. To the question ‘Are you personally in favour of organ donation?’, 92.4% responded affirmatively – 96.8% of nurses, 87.8% of nurses’ aides and 92.5% of physicians. To the question ‘What do you think of NTIC for organ donation?’, the healthcare professionals responded: useful (51.2%), understandable (33.2%), obligatory (10.3%), shocking (4.6%) and degrading (0.7%) (Figure 1). 3
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Table 1. Characteristics of the population of respondents. Wards Neurosurgical ICU Surgical ICU Medical ICU Stroke Unit Emergency Department Total
Physicians
Residents
Nurses
Nurses’ aides
Total
3/6 (50%) 5/8 (62%) 5/10 (50%) 1/4 (25%) 18/30 (60%) 17.2%
1/3 (33%) 3/6 (50%) 3/7 (40%) 0/2 5/15 (33%) 5.8%
27/40 (67%) 20/28 (71%) 27/37 (73%) 6/21 (29%) 13/64 (20%) 53.4%
13/24 (54%) 8/16 (50%) 7/19 (37%) 4/13 (31%) 5/24 (21%) 23.6%
26.4% 22.4% 24.7% 6.3% 20.1%
ICU: intensive care unit.
Table 2. Years of working experience. 1–5 years (%)
5–10 years (%)
10–20 years (%)
20–40 years (%)
32.20 52.30
24.70 23.60
25.90 16.70
17.20 7.50
Working experience In the department
0.7% 4.6% 10.3% Useful Understandable
51.2%
Obligatory Shocking Degrading
33.2%
Figure 1. ‘What do you think of NTIC for organ donation?’
To the question ‘To allow the transfer of a potential organ donor from a standard care ward or from the Emergency Department to ICU, you think it is necessary to verify’, the answers were as follows: the advance patient’s consent (30.6%), the consent of the family (44.8%) or to rule out the expression of the patient’s opposition because of presumed consent rule prevailing in France (24.6%). Regarding the feeling about care of the potential organ donor in ICU, the responses were as follows: a higher workload (46.0%), neither disturbing nor unpleasant (94.0%) the continuity of the patient’s care (93.1%). To the question ‘What is your state of mind when about to care for such a potential organ donor patient?’, only 0.8% responded ‘It leaves me cold. I am not interested’. Facing the imminent death of the patient, they do not feel neither a sense of failure (96.6%) nor an important psychological suffering (95.4%). To the question ‘In your opinion, the support of the potential organ donor’s family or relatives is . . . ’, the responses were as follows: particular (56.7%), complex (29.9%), identical to other families in ICU (7.4%) and conflicting (6.0%) (Figure 2). Almost all healthcare professionals (99.2%) give a specific and positive interest to this particular management (Figure 3). 4
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Ordinary 7.4% Conlicting 6.0%
Complicated 29.9%
Particular 56.7%
Figure 2. ‘In your opinion, the support of the potential organ donor’s family or relatives is . . . ’.
40.0
31.4%
31.2%
30.0
21.6%
20.0
13.4%
10.0
1.5%
0.8%
0.0 Mo
tiva
ted
Att by
enti
the
Dri
pro
ve t
ven
spe
o re
ct o
lati
by
f or
ons
gan
hip
gra
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axe
tech
ftin
h th
g
sua
e fa
l ch y
ally
l sta
alle
mil
Col
d, n
son
nu
nica
wit
Per
d, i
nge
te o
tou
fm
che
s
ind
ot i
db
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este
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ion
Figure 3. ‘What is your state of mind spirit when about to care for such a potential organ donor patient?’
Regarding education, only 18.1% of respondents received a specific teaching on the potential organ donor families’ support or grief and organ donation discussion. Despite this, 72% of nurses want to participate in discussions with families versus only 2% absolutely refusing to participate, and 65% of nurses’ aides would like to attend. Among those who had rather not to participate, 50% would change their mind if specifically trained. Only 21.8% of respondents have received a specific education regarding brain death (57.5% of physicians and 16.1% of nurses, none in nurses’ aides). Regarding brain death as real death, 8.3% of surveyed healthcare professionals do not regard brain death as true death: 14.6% of nurses’ aides, 5.4% of nurses and 5.0% of physicians. The proportion of sceptics is the highest in the Stroke Unit (36.4%) and the lowest in the Neurosurgical ICU (2.2%) (Figure 4). Regarding families’ information, 54.0% define correctly the advance announcement, and this strategy is approved by 88.0% of them. And 12% think that advance announcement could be too hard, increases relatives’ suffering and should be used very cautiously on a case-by-case basis. 5
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100.0
97,8 %
92,3 %
95,3 % 91,4 %
63,6 % yes
50.0
no
36,4 %
7,7 %
4,7 %
Surgical ICU
Medical ICU
2,2 %
8,6 %
0.0 Neurosurgical ICU
Stroke Unit
Emergency Dep.
Figure 4. ‘Do you consider brain death diagnosis as real death diagnosis?’
Discussion The concept of NTIC – also called elective ventilation or elective intensive care – first appeared in the late 1980s and has been developed progressively in several countries because of the worldwide organ shortage.10,11 Since its beginning, it has raised a number of ethical issues which are still debated today.2,12–18 Originally, elective ventilation describes the procedure of transferring selected patients dying from rapidly progressive intracranial haemorrhage from general medical wards to ICU for a brief period of ventilation to enable occurrence of brain death and donation of organs.19 It was then deemed by the British Association of Critical Care Nurses that the concept of elective ventilation for transplant purposes is not incompatible with the philosophy and aims of ICUs and nursing.20 But to our knowledge, our study is the first opinion of healthcare professionals’ survey on NTIC for donation after brain death in Europe.
Training needs Only 16% of nurses and 0% of nurses’ aides received specific education on brain death, but it seems that does not greatly affect their support to organ donation. This remaining lack of education of the healthcare professionals is constantly described in many surveys.21–23 Though, the understanding of brain death as a valid determination of death is associated with a positive effect on the level of comfort of healthcare professionals in performing key donor-related tasks.24 Reinforcing a positive attitude to brain death among healthcare professionals may facilitate the procurement process.24,25 Therefore, initial nurse and nurse’s aide education should include proper education on brain death, advance announcement and also on NTIC.21 Advance announcement is a necessary and critical prerequisite to NTIC. Advance announcement could be made more difficult as brain death is poorly understood by the general population and even by a significant proportion of healthcare professionals. Failure of families to understand brain death remains a cause of organ donation refusal.26 Studies consistently demonstrate that the general public and some healthcare professionals are improperly familiar with the medical and legal definition of brain death, and that concerns about death criteria correlate with less favourable attitudes towards organ donation. Furthermore, helping families to understand brain death9,27 and ethical criteria for withdrawing life support may help them be more comfortable with their acceptance of NTIC.22 So, healthcare 6
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professionals need to understand what difficulties and tensions are generated by NTIC to be able to deal with and help families. But if a healthcare professional remains unconvinced that NTIC does not harm the patient or is concerned that it can damage the trust of families, patients and even the general public, he or she could not sensibly partake in such care.23 Besides, to decrease the possible negative psychological impact of donation, relatives need early adequate communication. Consequently, the healthcare professionals’ education about communication is also essential.28
Acceptability of NTIC for brain death organ donation for healthcare professionals Honouring the patient’s values in medical decision making does not mean that the values of the care team should be disregarded, particularly regarding appropriate goals for care.29 Generally speaking, roughly 85% of our respondents are in favour of NTIC for donation after brain death. In a 2002 study conducted in British Columbia, 94% of healthcare workers and 98% of general public believed that organ donation would be permissible if further life support was deemed to be not in the patient’s best interest because of poor short-term prognosis.30 The fact that 93% of our respondents think that NTIC is in the continuity of patient’s care after futility statement substantiates the quite recent idea that patient’s best interest and beneficence are no longer reduced to so-called ‘medical’ or ‘clinical’ aspects and can embrace altruism or other values because of a more extended and holistic approach of the concept of individual’s welfare including social, moral or religious dimensions.2,8 Our acceptance rate of NTIC for donation after brain death is much better than that of NTIC for non-heart-beating organ donation reported in the literature.31,32 Indeed, most healthcare professionals are conducive to NTIC for brain death organ donation, but feel much more uncomfortable with NTIC for donation after cardiac death.23,31,33,34 For the practice, more than 75% of respondents think that the advance patient’s consent and the approval of the family must be obtained. Similarly to our findings, an American 2010 opinion study found that the general public predominantly wants physicians to obtain family’s consent before transferring the dying person in ICU and initiating NTIC,35 and in a recent review including 20 studies, Bastami et al.23 found that the majority of the public seems also be against NTIC without patient’s previous consent. Similarly, in an American 2006 survey, physicians of all specialties held the pragmatic views that NTIC was a way to carry out a patient’s wishes and conclude a patient’s advance directive.31
Healthcare professionals’ concerns More than 5% of respondents are against NTIC and find it shocking and even degrading. This could be explained by several concerns such as uncertainty in prognosis and grey-area judgments of medical hopelessness or the risk of alienation of healthcare providers from each other and from family members.30,31 The fear that sensational publicity could also negatively affect the public and tarnish their reputations has also been pointed out.31 Neuroscience nurses have especially called attention to the difficulty in predicting when death will occur, causing family to question professional judgment, emotionally taxing judgment of futility, lack of guidelines to assess futility of care, potential for patient harm and potential conflict of interest.31 Other possible concerns are about utilitarianism and possible instrumentalisation.2,9,36 The fact that many healthcare professionals think that patient’s or substituted family’s consent is requested could be the expression of a primary will to avoid any exploitation of the dying patient and to favour a morally neutral approach of organ donation grounded on autonomy principle rather than an utilitarian rationalism justified by the principle of social justice.37,38 Therefore, checking for unequivocal information from advance directives such as Mental Capacity Act, or the family or other close relatives’ testimony of the patient’s strong desire to donate seems critical.2 7
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Finally, our survey confirms the feeling of healthcare professionals highlighted by previous studies that caring for end-of-life potential organ donor is more difficult than simply caring at the end of life, perhaps partly because of the conflicts of duties and the blurry limits of the two types of care.9
Role of healthcare professionals In our study, despite a deficit of training on families’ support, brain death and NTIC, two-thirds of the healthcare professionals want to partake in organ donation discussions with families. Our survey confirms that healthcare professionals are aware of their responsibilities to all patients who die within their care to act in the patient’s best interest, including the wishes the patient may have made regarding organ donation21 and to meet the families’ psychological needs and provide comfort to them.27,39 Information of families on NTIC organ donation is not an option: it has been stated by some authors that hospitals and healthcare workers must be committed to provide the option of donation after NTIC in hopeless dying brain injured patients for both donors, their families and transplant recipients40 and in a morally neutral way.37 The respondents of our survey seem in line with these views.
Positive value of opposition to NTIC For some authors, the positive and ethical value of the families’ refusal of organ donation should be acknowledged.41 Similarly, the opposition of some healthcare professionals to NTIC should be recognised since it could stress the conflict of duties, the ethical uncertainties and boundaries of this practice and the need to further improve education.21 Indeed, healthcare professionals’ discomfort with NTIC is ethically relevant because it pertains to the principle of non-maleficence. Furthermore, the respect of the diversity of opinion in the healthcare team would insure and reinforce confidence and cohesion in the team and would finally facilitate organ donation–related care in the ward. No reservation of anyone about NTIC would be suspect of fear of expression of concerns in the ward and could have counterproductive effects on NTIC care.
Study limitations The participation to the survey was only 51% of targeted healthcare professionals. But we think that it does not mean that they were uninterested. Indeed, it is possible that simply letting the forms at the disposal of the healthcare professionals was not the best way to reach the highest participation. Because our survey is a single-centre one and has been conducted in a specific French context, the transferability of its results and conclusions could be somewhat limited. However, the results reflect universal values and issues, and some of the mentioned difficulties could be encountered by many teams. NTIC for donation after cardiac death has not been addressed in our survey, and its acceptance rate in our sample remains, therefore, unknown.
Conclusion In our study, the overall healthcare professionals’ acceptance of NTIC for brain death organ donation after hopeless stroke seems fairly good and better than acceptance of NTIC for donation after cardiac death in medical literature. Despite a suboptimal education regarding NTIC, a large majority of surveyed healthcare professionals are in favour of it. But they ask to require previously expressed patient’s consent and family’s approval. However, the results of this opinion survey highlight the necessity to correctly inform and educate healthcare professionals on NTIC before implementing it. Failing this could lead to misunderstanding and 8
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disapproval reactions. Obviously, lacking the support of healthcare professionals to NTIC strategy would impede potential organ donors’ families – and even general public – information, comprehension and support. NTIC remains a hard existentialistic experience for families already preparing for a loved one’s death and for healthcare professionals caring for the patient and the family too. Finally, this study tends to strengthen the idea that NTIC should only remain an ethically sound mean of empowerment of organ donors and their families to make donation happen as a full respect of ethical patient’s autonomy. In this regard, practitioners have a key role to play in the medical ethics education of the general population in our multicultural contexts, to enable people to make their own informed choices. Acknowledgements The authors greatly thank all healthcare professionals for their kind and worthy participation in this survey. Conflict of interest None declared. Funding This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. References 1. Feest TG, Riad HN, Collins CH, et al. Protocol for increasing organ donation after cerebrovascular deaths in a district general hospital. Lancet 1990; 335: 1133–1135. 2. Baumann A, Audibert G, Guibet Lafaye C, et al. Elective non-therapeutic intensive care and the four principles of medical ethics. J Med Ethics 2013; 39: 139–142. 3. Salih MA, Harvey I, Frankel S, et al. Potential availability of cadaver organs for transplantation. BMJ 1991; 302: 1053–1055. 4. Le Dinh H, Monard J, Delbouille MH, et al. A more than 20% increase in deceased-donor organ procurement and transplantation activity after the use of donation after circulatory death. Transplant Proc 2014; 46: 9–13. 5. Martin-Lefevre L, Jacob JP and Pessionne F. Management of organ donation for patients with severe coma due to cerebrovascular stroke. Rev Neurol 2011; 167: 463–467. 6. Graftieaux JP, Bollaert PE, Haddad L, et al. Contribution of the ethics committee of the French Intensive Care Society to describing a scenario for implementing organ donation after Maastricht type III cardiocirculatory death in France. Ann Intensive Care 2012; 2(1): 23–32. 7. Puybasset L, Bazin JE, Beloucif S, et al. Critical appraisal of organ procurement under Maastricht 3 condition. Ann Fr Anesth Reanim 2014; 33(2): 120–127. 8. Coggon J. Elective ventilation for organ donation: law, policy and public ethics. J Med Ethics 2013; 39: 130–134. 9. Bendorf A, Kerridge IH and Stewart C. Intimacy or utility? Organ donation and the choice between palliation and ventilation. Crit Care 2013; 17: 316–321. 10. Gentleman D, Easton J and Jennett B. Brain death and organ donation in a neurosurgical unit: audit of recent practice. BMJ 1990; 301: 1203–1206. 11. DeVita MA and Snyder JV. Development of the University of Pittsburgh Medical Center policy for the care of terminally ill patients who may become organ donors after death following the removal of life support. Kennedy Inst Ethics J 1993; 3: 131–143. 12. Weisbard AJ. A polemic on principles: reflections on the Pittsburgh protocol. Kennedy Inst Ethics J 1993; 3: 217–230. 13. Shaw BW Jr. Conflict of interest in the procurement of organs from cadavers following withdrawal of life support. Kennedy Inst Ethics J 1993; 3: 179–187. 9
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14. Fox RC. ‘An ignoble form of cannibalism’: reflections on the Pittsburgh protocol for procuring organs from non-heart-beating cadavers. Kennedy Inst Ethics J 1993; 3: 231–239. 15. Manara A and Jewkes C. Elective ventilation of potential organ donors. Intensive care units have good reasons not to do it. BMJ 1995; 311: 121–122. 16. Browne A, Gillett G and Tweeddale M. The ethics of elective (non-therapeutic) ventilation. Bioethics 2000; 14: 42–57. 17. Manno EM. Nonheart-beating donation in the neurologically devastated patient. Neurocrit Care 2005; 3: 111–114. 18. Welin S, Sanner M and Nydahl A. Non-therapeutic ventilation of potential donor is ethically acceptable. It allows time to consider for both the family and the personnel. Lakartidningen 2005; 102: 1411–1412, 1414–1416. 19. Riad H, Nicholls A, Neuberger J, et al. Elective ventilation of potential organ donors. BMJ 1995; 310: 714–715. 20. Blackwell C. Elective ventilation for transplant purposes. Intensive Crit Care Nurs 1993; 9: 122–128. 21. Elding C and Scholes J. Organ and tissue donation: a trustwide perspective or critical care concern? Nurs Crit Care 2005; 10: 129–135. 22. DuBois JM and Anderson EE. Attitudes toward death criteria and organ donation among healthcare personnel and the general public. Prog Transplant 2006; 16: 65–73. 23. Bastami S, Matthes O, Krones T, et al. Systematic review of attitudes toward donation after cardiac death among healthcare providers and the general public. Crit Care Med 2013; 41: 897–905. 24. Cohen J, Ami SB, Ashkenazi T, et al. Attitude of health care professionals to brain death: influence on the organ donation process. Clin Transplant 2008; 22: 211–215. 25. McGlade D and Pierscionek B. Can education alter attitudes, behaviour and knowledge about organ donation? A pretest–post-test study. BMJ Open 2013; 3(12): e003961. 26. Anker AE and Feeley TH. Why families decline donation: the perspective of organ procurement coordinators. Prog Transplant 2010; 20: 239–246. 27. Coyle MA. Meeting the needs of the family: the role of the specialist nurse in the management of brain death. Intensive Crit Care Nurs 2000; 16(1): 45–50. 28. Smudla A, Hegedus K, Mihay S, et al. The HELLP concept – relatives of deceased donors need the Help Earlier in parallel with Loss of a Loved Person. Ann Transplant 2012; 17(2): 18–28. 29. Aulisio MP, Devita M and Luebke D. Taking values seriously: ethical challenges in organ donation and transplantation for critical care professionals. Crit Care Med 2007; 35(2 Suppl): S95–S101. 30. Keenan SP, Hoffmaster B, Rutledge F, et al. Attitudes regarding organ donation from non-heart-beating donors. J Crit Care 2002; 17(1): 29–36; discussion 37–38. 31. Mandell MS, Zamudio S, Seem D, et al. National evaluation of healthcare provider attitudes toward organ donation after cardiac death. Crit Care Med 2006; 34(12): 2952–2958. 32. Vincent JL, Maetens Y, Vanderwallen C, et al. Non-heart-beating donors: an inquiry to ICU nurses in a Belgian University Hospital. Transplant Proc 2009; 41(2): 579–581. 33. Wolf ZR. Nurses’ responses to organ procurement from nonheartbeating cadaver donors. AORN J 1994; 60(6): 968, 971–974, 977–981. 34. D’Alessandro AM, Peltier JW and Phelps JE. Understanding the antecedents of the acceptance of donation after cardiac death by healthcare professionals. Crit Care Med 2008; 36(4): 1075–1081. 35. Volk ML, Warren GJ, Anspach RR, et al. Attitudes of the American public toward organ donation after uncontrolled (sudden) cardiac death. Am J Transplant 2010; 10(3): 675–680. 36. Monette M. The ethics of elective ventilation. CMAJ 2012; 184(16): E841–E842. 37. Streat S. Clinical review: moral assumptions and the process of organ donation in the intensive care unit. Crit Care 2004; 8(5): 382–388. 10
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38. Oroy A, Stromskag KE and Gjengedal E. Do we treat individuals as patients or as potential donors? A phenomenological study of healthcare professionals’ experiences. Nurs Ethics. Epub ahead of print 29 April 2014. DOI: 10. 1177/0969733014523170. 39. Pochard F, Grassin M, Maroudy D, et al. Encouraging organ donation: the paradox. CMAJ 1997; 157(9): 1198. 40. Sills P, Bair HA, Gates L, et al. Donation after cardiac death: lessons learned. J Trauma Nurs 2007; 14(1): 47–50. 41. Grassin M. The positive value of the refusal of organs donation. Ethique et Sante´ 2013; 10: 200–204.
Questionnaire You are:
c c
Department:
Male c Female Senior Physician c
Age: Resident
Years of working experience:
c
Nurse
c
Nurse’s aide
in the department:
Have you previously taken part in an organ donor care?
Yes
c
No
c
Is NTIC sometimes decided or performed in your ward?
Yes
c
No
c
Are you personally in favour of organ donation?
Yes
c
No
c
What do you think of NTIC for organ donation? c c c c c
Useful Understandable Obligatory Shocking Degrading
To allow the transfer of a potential organ donor from a standard care ward or from the Emergency Department to an ICU, you think it is necessary to verify: c c c
the advance patient’s consent the consent of the family the expression of patient’s opposition because of presumed consent rule
What are your feelings about handling of the potential organ donor in ICU? c c c c c c c
It entails a higher workload It entails a particular specific workload It is neither disturbing nor unpleasant I don’t like it. That disturbs me, makes me uncomfortable. I object to this practice. It is the continuity of the patient’s care I appreciate to take part in this particular care I want to take part
What is your state of mind when about to care for such a potential organ donor patient? c c c c
I am motivated by the prospect of organ grafting I am driven by the technical challenges I am attentive to relationship with the family I am personally touched by the situation 11
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It leaves me cold. I am not interested I am relaxed: It is the usual management
Facing the imminent death of a potential organ donor, you usually experience: A feeling of failure An important psychological suffering
Yes c Yes c
No c No c
In your opinion, the support of the potential organ donor’s family or relatives is: Particular Complex Conflicting Identical to other families in ICU
Yes c Yes c Yes c Yes c
No c No c No c No c
Did you receive a specific training regarding interview with families of potential organ donors? Yes c No c For nurses: Do you usually take part in interview with families aiming at finding out the will of the patient regarding organ donation? c c c c c
Always, because I want to Sometimes, when the workload of the day is light Only when the doctor asks me to come Never, because I don’t want to I would like but the doctors did not
For nurses’ aides: Would you like to take part in interview with families aiming at ascertaining the will of the patient regarding organ donation? Yes c No c For nurses: If you had rather not to participate, do you think that a specific training may help change your mind? Yes c No c Did you receive a specific training regarding the management of the brain dead patient? Yes c
No c
Do you consider brain death diagnosis as real death diagnosis?
No c
What is advance announcement? and what are your comments on it?
12
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Non-therapeutic intensive care for organ donation: A healthcare professionals’ opinion survey
Nursing Ethics 1–12 ª The Author(s) 2014 Reprints and permission: sagepub.co.uk/journalsPermissions.nav 10.1177/0969733014558969 nej.sagepub.com
Ste´phanie Camut University Hospital, France
Antoine Baumann University Hospital, France; Ethos EA 7299, Universite´ de Lorraine, France; Comite´ de Re´flexion Ethique Nance´ien Hospitalo-Universitaire, France
Ve´ronique Dubois University Hospital, France; Comite´ de Re´flexion Ethique Nance´ien Hospitalo-Universitaire, France
Xavier Ducrocq University Hospital, France; Ethos, EA 7299, Universite´ de Lorraine, France; Comite´ de Re´flexion Ethique Nance´ien Hospitalo-Universitaire, France
Ge´rard Audibert University Hospital, France; Comite´ de Re´flexion Ethique Nance´ien Hospitalo-Universitaire, France
Abstract Background and Purpose: Providing non-therapeutic intensive care for some patients in hopeless condition after cerebrovascular stroke in order to protect their organs for possible post-mortem organ donation after brain death is an effective but ethically tricky strategy to increase organ grafting. Finding out the feelings and opinion of the involved healthcare professionals and assessing the training needs before implementing such a strategy is critical to avoid backlash even in a presumed consent system. Participants and methods: A single-centre opinion survey of healthcare professionals was conducted in 2013 in the potentially involved wards of a French University Hospital: the Neurosurgical, Surgical and Medical Intensive Care Units, the Stroke Unit and the Emergency Department. A questionnaire with multiplechoice questions and one open-ended question was made available in the different wards between February and May 2013. Ethical considerations: The project was approved by the board of the Lorraine University Diploma in Medical Ethics. Results: Of a total of 340 healthcare professionals, 51% filled the form. Only 21.8% received a specific education on brain death, and only 18% on potential donor’s family approach and support. Most healthcare professionals (93%) think that non-therapeutic intensive care is the continuity of patient’s care. But more than 75% of respondents think that the advance patient’s consent and the consent of
Corresponding author: Antoine Baumann, Hoˆpital Central, University Hospital, 29, avenue du Mare´chal de Lattre de Tassigny, 54000 Nancy, France. Email: [email protected]
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the family must be obtained despite the presumed consent rule regarding post-mortem organ donation in France. Conclusion: The acceptance by healthcare professionals of non-therapeutic intensive care for brain death organ donation seems fairly good, despite a suboptimal education regarding brain death, non-therapeutic intensive care and families’ support. But they ask to require previously expressed patient’s consent and family’s approval. So, it seems that non-therapeutic intensive care should only remain an ethically sound mean of empowerment of organ donors and their families to make post-mortem donation happen as a full respect of individual autonomy. Keywords Elective ventilation, ethics, non-therapeutic care, nursing, organ donation, presumed consent
Introduction Non-therapeutic intensive care (NTIC) also called ‘elective ventilation’1 is provision of intensive care for a patient who is thought not to be able to benefit from it, in order to protect his/her organs for donation purposes.2 NTIC covers two different types of situations: patients definitely evolving towards brain death and patients suitable as controlled non-heart-beating organ donors after life-supporting therapies have been assessed as futile and withdrawn.2 Practically, its interest is to increase the number of organ donation.3,4 NTIC initiative targets principally patients with severe neurovascular injury considered inappropriate for surgical intervention or active support, but who are then intubated and ventilated ‘at the point of death’ and supported in anticipation of progression to brain death.
Background Post-mortem organ donation in France is ruled by presumed consent principle and a refusal national register (opt-out) is available. NTIC after hopeless stroke has been deemed to be ethically acceptable under some specific conditions for the two modalities – brain death and non-heart-beating2,5–7 – and controlled nonheart-beating organ donation (Maastricht III type) is presently being examined while not yet lawful. Despite this statement, the acceptance by all potentially involved healthcare professionals seems critical.8 Indeed, it has been stated that health policies and strategies can be sensibly implemented only if we allow for more than morality and legality.8 Particularly, to avoid backlash, it is essential that due attention be paid to the actual acceptability of NTIC to obtain endorsement by professionals who will be required to work under such policies.8,9
Participants and methods Aim The aims of our study were to investigate the feelings and the acceptance by healthcare professionals of NTIC for brain death organ donation and to assess their training needs. We assumed that the findings could be of interest for the implementation of NTIC for organ donation policies in many other countries. 2
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Design of the study A single-centre opinion survey using an anonymous questionnaire was conducted by a staff nurse in the potentially involved wards of the University Hospital of Nancy, France: the Neurosurgical, Surgical and Medical Intensive Care Units (ICUs), the Stroke Unit and the Emergency Department.
Participants Physicians, nurses and nurses’ aides were requested to participate in the survey. Because nurses’ aides are very close to patients during washing and comfort care, use to cater for families visiting their loved ones in our institution, comfort them and often discuss with them in a more informal and free way than doctors and nurses do, their opinion appeared to be very pregnant.
Ethical considerations The project was approved by the board of the Lorraine University Diploma in medical ethics. The nursing and medical heads of the different wards also gave their approval for the research to be carried out.
Methods A first version of the questionnaire was drafted by a staff nurse of the Neurosurgical ICU for her diploma in medical ethics. This first version was revised by her head nurse and by several physicians of different wards targeted by the survey. A test run was conducted with a few nurses and nurses’ aides to improve the matter and the clarity of the questions. As controlled, non-heart-beating donation is not yet permitted in France, NTIC was defined at the top of the form as the fact to provide intensive care to a patient in a hopeless condition for whom a decision to withhold or withdraw futile vital support has been made, because of probable progress towards brain death and therefore towards potential organ donation. This may include ICU transfer from a standard care ward or the Emergency Department and intubation of a patient in hopeless condition only for organ preservation purpose. The questionnaire with 13 multiple-choice questions and one openended question was made available in the different wards between February and May 2013. The data were collected and analysed using the Sphinx Declic1 software (Le Sphinx De´veloppement, France).
Results Out of a total of 340 targeted healthcare professionals, we obtained completed questionnaires from 174, representing 51% of the population. The composition of the respondent sample was as follows: nurses, 53.4%; nurses’ aides, 23.6%; physicians, 17.2%; anaesthesia and intensive care residents, 5.2%; and other specialties residents, 0.6%. These proportions roughly match the composition of the population investigated. Because of the small number of residents, the results of physicians and residents were merged. Tables 1 and 2 present the characteristics of respondents. An overwhelming majority of 93.7% of respondents had previously taken part in an organ donor care and 95% attest that NTIC is sometimes decided or performed in their wards. To the question ‘Are you personally in favour of organ donation?’, 92.4% responded affirmatively – 96.8% of nurses, 87.8% of nurses’ aides and 92.5% of physicians. To the question ‘What do you think of NTIC for organ donation?’, the healthcare professionals responded: useful (51.2%), understandable (33.2%), obligatory (10.3%), shocking (4.6%) and degrading (0.7%) (Figure 1). 3
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Table 1. Characteristics of the population of respondents. Wards Neurosurgical ICU Surgical ICU Medical ICU Stroke Unit Emergency Department Total
Physicians
Residents
Nurses
Nurses’ aides
Total
3/6 (50%) 5/8 (62%) 5/10 (50%) 1/4 (25%) 18/30 (60%) 17.2%
1/3 (33%) 3/6 (50%) 3/7 (40%) 0/2 5/15 (33%) 5.8%
27/40 (67%) 20/28 (71%) 27/37 (73%) 6/21 (29%) 13/64 (20%) 53.4%
13/24 (54%) 8/16 (50%) 7/19 (37%) 4/13 (31%) 5/24 (21%) 23.6%
26.4% 22.4% 24.7% 6.3% 20.1%
ICU: intensive care unit.
Table 2. Years of working experience. 1–5 years (%)
5–10 years (%)
10–20 years (%)
20–40 years (%)
32.20 52.30
24.70 23.60
25.90 16.70
17.20 7.50
Working experience In the department
0.7% 4.6% 10.3% Useful Understandable
51.2%
Obligatory Shocking Degrading
33.2%
Figure 1. ‘What do you think of NTIC for organ donation?’
To the question ‘To allow the transfer of a potential organ donor from a standard care ward or from the Emergency Department to ICU, you think it is necessary to verify’, the answers were as follows: the advance patient’s consent (30.6%), the consent of the family (44.8%) or to rule out the expression of the patient’s opposition because of presumed consent rule prevailing in France (24.6%). Regarding the feeling about care of the potential organ donor in ICU, the responses were as follows: a higher workload (46.0%), neither disturbing nor unpleasant (94.0%) the continuity of the patient’s care (93.1%). To the question ‘What is your state of mind when about to care for such a potential organ donor patient?’, only 0.8% responded ‘It leaves me cold. I am not interested’. Facing the imminent death of the patient, they do not feel neither a sense of failure (96.6%) nor an important psychological suffering (95.4%). To the question ‘In your opinion, the support of the potential organ donor’s family or relatives is . . . ’, the responses were as follows: particular (56.7%), complex (29.9%), identical to other families in ICU (7.4%) and conflicting (6.0%) (Figure 2). Almost all healthcare professionals (99.2%) give a specific and positive interest to this particular management (Figure 3). 4
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Ordinary 7.4% Conlicting 6.0%
Complicated 29.9%
Particular 56.7%
Figure 2. ‘In your opinion, the support of the potential organ donor’s family or relatives is . . . ’.
40.0
31.4%
31.2%
30.0
21.6%
20.0
13.4%
10.0
1.5%
0.8%
0.0 Mo
tiva
ted
Att by
enti
the
Dri
pro
ve t
ven
spe
o re
ct o
lati
by
f or
ons
gan
hip
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e fa
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ally
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d, i
nge
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ind
ot i
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ion
Figure 3. ‘What is your state of mind spirit when about to care for such a potential organ donor patient?’
Regarding education, only 18.1% of respondents received a specific teaching on the potential organ donor families’ support or grief and organ donation discussion. Despite this, 72% of nurses want to participate in discussions with families versus only 2% absolutely refusing to participate, and 65% of nurses’ aides would like to attend. Among those who had rather not to participate, 50% would change their mind if specifically trained. Only 21.8% of respondents have received a specific education regarding brain death (57.5% of physicians and 16.1% of nurses, none in nurses’ aides). Regarding brain death as real death, 8.3% of surveyed healthcare professionals do not regard brain death as true death: 14.6% of nurses’ aides, 5.4% of nurses and 5.0% of physicians. The proportion of sceptics is the highest in the Stroke Unit (36.4%) and the lowest in the Neurosurgical ICU (2.2%) (Figure 4). Regarding families’ information, 54.0% define correctly the advance announcement, and this strategy is approved by 88.0% of them. And 12% think that advance announcement could be too hard, increases relatives’ suffering and should be used very cautiously on a case-by-case basis. 5
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100.0
97,8 %
92,3 %
95,3 % 91,4 %
63,6 % yes
50.0
no
36,4 %
7,7 %
4,7 %
Surgical ICU
Medical ICU
2,2 %
8,6 %
0.0 Neurosurgical ICU
Stroke Unit
Emergency Dep.
Figure 4. ‘Do you consider brain death diagnosis as real death diagnosis?’
Discussion The concept of NTIC – also called elective ventilation or elective intensive care – first appeared in the late 1980s and has been developed progressively in several countries because of the worldwide organ shortage.10,11 Since its beginning, it has raised a number of ethical issues which are still debated today.2,12–18 Originally, elective ventilation describes the procedure of transferring selected patients dying from rapidly progressive intracranial haemorrhage from general medical wards to ICU for a brief period of ventilation to enable occurrence of brain death and donation of organs.19 It was then deemed by the British Association of Critical Care Nurses that the concept of elective ventilation for transplant purposes is not incompatible with the philosophy and aims of ICUs and nursing.20 But to our knowledge, our study is the first opinion of healthcare professionals’ survey on NTIC for donation after brain death in Europe.
Training needs Only 16% of nurses and 0% of nurses’ aides received specific education on brain death, but it seems that does not greatly affect their support to organ donation. This remaining lack of education of the healthcare professionals is constantly described in many surveys.21–23 Though, the understanding of brain death as a valid determination of death is associated with a positive effect on the level of comfort of healthcare professionals in performing key donor-related tasks.24 Reinforcing a positive attitude to brain death among healthcare professionals may facilitate the procurement process.24,25 Therefore, initial nurse and nurse’s aide education should include proper education on brain death, advance announcement and also on NTIC.21 Advance announcement is a necessary and critical prerequisite to NTIC. Advance announcement could be made more difficult as brain death is poorly understood by the general population and even by a significant proportion of healthcare professionals. Failure of families to understand brain death remains a cause of organ donation refusal.26 Studies consistently demonstrate that the general public and some healthcare professionals are improperly familiar with the medical and legal definition of brain death, and that concerns about death criteria correlate with less favourable attitudes towards organ donation. Furthermore, helping families to understand brain death9,27 and ethical criteria for withdrawing life support may help them be more comfortable with their acceptance of NTIC.22 So, healthcare 6
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professionals need to understand what difficulties and tensions are generated by NTIC to be able to deal with and help families. But if a healthcare professional remains unconvinced that NTIC does not harm the patient or is concerned that it can damage the trust of families, patients and even the general public, he or she could not sensibly partake in such care.23 Besides, to decrease the possible negative psychological impact of donation, relatives need early adequate communication. Consequently, the healthcare professionals’ education about communication is also essential.28
Acceptability of NTIC for brain death organ donation for healthcare professionals Honouring the patient’s values in medical decision making does not mean that the values of the care team should be disregarded, particularly regarding appropriate goals for care.29 Generally speaking, roughly 85% of our respondents are in favour of NTIC for donation after brain death. In a 2002 study conducted in British Columbia, 94% of healthcare workers and 98% of general public believed that organ donation would be permissible if further life support was deemed to be not in the patient’s best interest because of poor short-term prognosis.30 The fact that 93% of our respondents think that NTIC is in the continuity of patient’s care after futility statement substantiates the quite recent idea that patient’s best interest and beneficence are no longer reduced to so-called ‘medical’ or ‘clinical’ aspects and can embrace altruism or other values because of a more extended and holistic approach of the concept of individual’s welfare including social, moral or religious dimensions.2,8 Our acceptance rate of NTIC for donation after brain death is much better than that of NTIC for non-heart-beating organ donation reported in the literature.31,32 Indeed, most healthcare professionals are conducive to NTIC for brain death organ donation, but feel much more uncomfortable with NTIC for donation after cardiac death.23,31,33,34 For the practice, more than 75% of respondents think that the advance patient’s consent and the approval of the family must be obtained. Similarly to our findings, an American 2010 opinion study found that the general public predominantly wants physicians to obtain family’s consent before transferring the dying person in ICU and initiating NTIC,35 and in a recent review including 20 studies, Bastami et al.23 found that the majority of the public seems also be against NTIC without patient’s previous consent. Similarly, in an American 2006 survey, physicians of all specialties held the pragmatic views that NTIC was a way to carry out a patient’s wishes and conclude a patient’s advance directive.31
Healthcare professionals’ concerns More than 5% of respondents are against NTIC and find it shocking and even degrading. This could be explained by several concerns such as uncertainty in prognosis and grey-area judgments of medical hopelessness or the risk of alienation of healthcare providers from each other and from family members.30,31 The fear that sensational publicity could also negatively affect the public and tarnish their reputations has also been pointed out.31 Neuroscience nurses have especially called attention to the difficulty in predicting when death will occur, causing family to question professional judgment, emotionally taxing judgment of futility, lack of guidelines to assess futility of care, potential for patient harm and potential conflict of interest.31 Other possible concerns are about utilitarianism and possible instrumentalisation.2,9,36 The fact that many healthcare professionals think that patient’s or substituted family’s consent is requested could be the expression of a primary will to avoid any exploitation of the dying patient and to favour a morally neutral approach of organ donation grounded on autonomy principle rather than an utilitarian rationalism justified by the principle of social justice.37,38 Therefore, checking for unequivocal information from advance directives such as Mental Capacity Act, or the family or other close relatives’ testimony of the patient’s strong desire to donate seems critical.2 7
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Finally, our survey confirms the feeling of healthcare professionals highlighted by previous studies that caring for end-of-life potential organ donor is more difficult than simply caring at the end of life, perhaps partly because of the conflicts of duties and the blurry limits of the two types of care.9
Role of healthcare professionals In our study, despite a deficit of training on families’ support, brain death and NTIC, two-thirds of the healthcare professionals want to partake in organ donation discussions with families. Our survey confirms that healthcare professionals are aware of their responsibilities to all patients who die within their care to act in the patient’s best interest, including the wishes the patient may have made regarding organ donation21 and to meet the families’ psychological needs and provide comfort to them.27,39 Information of families on NTIC organ donation is not an option: it has been stated by some authors that hospitals and healthcare workers must be committed to provide the option of donation after NTIC in hopeless dying brain injured patients for both donors, their families and transplant recipients40 and in a morally neutral way.37 The respondents of our survey seem in line with these views.
Positive value of opposition to NTIC For some authors, the positive and ethical value of the families’ refusal of organ donation should be acknowledged.41 Similarly, the opposition of some healthcare professionals to NTIC should be recognised since it could stress the conflict of duties, the ethical uncertainties and boundaries of this practice and the need to further improve education.21 Indeed, healthcare professionals’ discomfort with NTIC is ethically relevant because it pertains to the principle of non-maleficence. Furthermore, the respect of the diversity of opinion in the healthcare team would insure and reinforce confidence and cohesion in the team and would finally facilitate organ donation–related care in the ward. No reservation of anyone about NTIC would be suspect of fear of expression of concerns in the ward and could have counterproductive effects on NTIC care.
Study limitations The participation to the survey was only 51% of targeted healthcare professionals. But we think that it does not mean that they were uninterested. Indeed, it is possible that simply letting the forms at the disposal of the healthcare professionals was not the best way to reach the highest participation. Because our survey is a single-centre one and has been conducted in a specific French context, the transferability of its results and conclusions could be somewhat limited. However, the results reflect universal values and issues, and some of the mentioned difficulties could be encountered by many teams. NTIC for donation after cardiac death has not been addressed in our survey, and its acceptance rate in our sample remains, therefore, unknown.
Conclusion In our study, the overall healthcare professionals’ acceptance of NTIC for brain death organ donation after hopeless stroke seems fairly good and better than acceptance of NTIC for donation after cardiac death in medical literature. Despite a suboptimal education regarding NTIC, a large majority of surveyed healthcare professionals are in favour of it. But they ask to require previously expressed patient’s consent and family’s approval. However, the results of this opinion survey highlight the necessity to correctly inform and educate healthcare professionals on NTIC before implementing it. Failing this could lead to misunderstanding and 8
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disapproval reactions. Obviously, lacking the support of healthcare professionals to NTIC strategy would impede potential organ donors’ families – and even general public – information, comprehension and support. NTIC remains a hard existentialistic experience for families already preparing for a loved one’s death and for healthcare professionals caring for the patient and the family too. Finally, this study tends to strengthen the idea that NTIC should only remain an ethically sound mean of empowerment of organ donors and their families to make donation happen as a full respect of ethical patient’s autonomy. In this regard, practitioners have a key role to play in the medical ethics education of the general population in our multicultural contexts, to enable people to make their own informed choices. Acknowledgements The authors greatly thank all healthcare professionals for their kind and worthy participation in this survey. Conflict of interest None declared. Funding This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. References 1. Feest TG, Riad HN, Collins CH, et al. Protocol for increasing organ donation after cerebrovascular deaths in a district general hospital. Lancet 1990; 335: 1133–1135. 2. Baumann A, Audibert G, Guibet Lafaye C, et al. Elective non-therapeutic intensive care and the four principles of medical ethics. J Med Ethics 2013; 39: 139–142. 3. Salih MA, Harvey I, Frankel S, et al. Potential availability of cadaver organs for transplantation. BMJ 1991; 302: 1053–1055. 4. Le Dinh H, Monard J, Delbouille MH, et al. A more than 20% increase in deceased-donor organ procurement and transplantation activity after the use of donation after circulatory death. Transplant Proc 2014; 46: 9–13. 5. Martin-Lefevre L, Jacob JP and Pessionne F. Management of organ donation for patients with severe coma due to cerebrovascular stroke. Rev Neurol 2011; 167: 463–467. 6. Graftieaux JP, Bollaert PE, Haddad L, et al. Contribution of the ethics committee of the French Intensive Care Society to describing a scenario for implementing organ donation after Maastricht type III cardiocirculatory death in France. Ann Intensive Care 2012; 2(1): 23–32. 7. Puybasset L, Bazin JE, Beloucif S, et al. Critical appraisal of organ procurement under Maastricht 3 condition. Ann Fr Anesth Reanim 2014; 33(2): 120–127. 8. Coggon J. Elective ventilation for organ donation: law, policy and public ethics. J Med Ethics 2013; 39: 130–134. 9. Bendorf A, Kerridge IH and Stewart C. Intimacy or utility? Organ donation and the choice between palliation and ventilation. Crit Care 2013; 17: 316–321. 10. Gentleman D, Easton J and Jennett B. Brain death and organ donation in a neurosurgical unit: audit of recent practice. BMJ 1990; 301: 1203–1206. 11. DeVita MA and Snyder JV. Development of the University of Pittsburgh Medical Center policy for the care of terminally ill patients who may become organ donors after death following the removal of life support. Kennedy Inst Ethics J 1993; 3: 131–143. 12. Weisbard AJ. A polemic on principles: reflections on the Pittsburgh protocol. Kennedy Inst Ethics J 1993; 3: 217–230. 13. Shaw BW Jr. Conflict of interest in the procurement of organs from cadavers following withdrawal of life support. Kennedy Inst Ethics J 1993; 3: 179–187. 9
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14. Fox RC. ‘An ignoble form of cannibalism’: reflections on the Pittsburgh protocol for procuring organs from non-heart-beating cadavers. Kennedy Inst Ethics J 1993; 3: 231–239. 15. Manara A and Jewkes C. Elective ventilation of potential organ donors. Intensive care units have good reasons not to do it. BMJ 1995; 311: 121–122. 16. Browne A, Gillett G and Tweeddale M. The ethics of elective (non-therapeutic) ventilation. Bioethics 2000; 14: 42–57. 17. Manno EM. Nonheart-beating donation in the neurologically devastated patient. Neurocrit Care 2005; 3: 111–114. 18. Welin S, Sanner M and Nydahl A. Non-therapeutic ventilation of potential donor is ethically acceptable. It allows time to consider for both the family and the personnel. Lakartidningen 2005; 102: 1411–1412, 1414–1416. 19. Riad H, Nicholls A, Neuberger J, et al. Elective ventilation of potential organ donors. BMJ 1995; 310: 714–715. 20. Blackwell C. Elective ventilation for transplant purposes. Intensive Crit Care Nurs 1993; 9: 122–128. 21. Elding C and Scholes J. Organ and tissue donation: a trustwide perspective or critical care concern? Nurs Crit Care 2005; 10: 129–135. 22. DuBois JM and Anderson EE. Attitudes toward death criteria and organ donation among healthcare personnel and the general public. Prog Transplant 2006; 16: 65–73. 23. Bastami S, Matthes O, Krones T, et al. Systematic review of attitudes toward donation after cardiac death among healthcare providers and the general public. Crit Care Med 2013; 41: 897–905. 24. Cohen J, Ami SB, Ashkenazi T, et al. Attitude of health care professionals to brain death: influence on the organ donation process. Clin Transplant 2008; 22: 211–215. 25. McGlade D and Pierscionek B. Can education alter attitudes, behaviour and knowledge about organ donation? A pretest–post-test study. BMJ Open 2013; 3(12): e003961. 26. Anker AE and Feeley TH. Why families decline donation: the perspective of organ procurement coordinators. Prog Transplant 2010; 20: 239–246. 27. Coyle MA. Meeting the needs of the family: the role of the specialist nurse in the management of brain death. Intensive Crit Care Nurs 2000; 16(1): 45–50. 28. Smudla A, Hegedus K, Mihay S, et al. The HELLP concept – relatives of deceased donors need the Help Earlier in parallel with Loss of a Loved Person. Ann Transplant 2012; 17(2): 18–28. 29. Aulisio MP, Devita M and Luebke D. Taking values seriously: ethical challenges in organ donation and transplantation for critical care professionals. Crit Care Med 2007; 35(2 Suppl): S95–S101. 30. Keenan SP, Hoffmaster B, Rutledge F, et al. Attitudes regarding organ donation from non-heart-beating donors. J Crit Care 2002; 17(1): 29–36; discussion 37–38. 31. Mandell MS, Zamudio S, Seem D, et al. National evaluation of healthcare provider attitudes toward organ donation after cardiac death. Crit Care Med 2006; 34(12): 2952–2958. 32. Vincent JL, Maetens Y, Vanderwallen C, et al. Non-heart-beating donors: an inquiry to ICU nurses in a Belgian University Hospital. Transplant Proc 2009; 41(2): 579–581. 33. Wolf ZR. Nurses’ responses to organ procurement from nonheartbeating cadaver donors. AORN J 1994; 60(6): 968, 971–974, 977–981. 34. D’Alessandro AM, Peltier JW and Phelps JE. Understanding the antecedents of the acceptance of donation after cardiac death by healthcare professionals. Crit Care Med 2008; 36(4): 1075–1081. 35. Volk ML, Warren GJ, Anspach RR, et al. Attitudes of the American public toward organ donation after uncontrolled (sudden) cardiac death. Am J Transplant 2010; 10(3): 675–680. 36. Monette M. The ethics of elective ventilation. CMAJ 2012; 184(16): E841–E842. 37. Streat S. Clinical review: moral assumptions and the process of organ donation in the intensive care unit. Crit Care 2004; 8(5): 382–388. 10
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38. Oroy A, Stromskag KE and Gjengedal E. Do we treat individuals as patients or as potential donors? A phenomenological study of healthcare professionals’ experiences. Nurs Ethics. Epub ahead of print 29 April 2014. DOI: 10. 1177/0969733014523170. 39. Pochard F, Grassin M, Maroudy D, et al. Encouraging organ donation: the paradox. CMAJ 1997; 157(9): 1198. 40. Sills P, Bair HA, Gates L, et al. Donation after cardiac death: lessons learned. J Trauma Nurs 2007; 14(1): 47–50. 41. Grassin M. The positive value of the refusal of organs donation. Ethique et Sante´ 2013; 10: 200–204.
Questionnaire You are:
c c
Department:
Male c Female Senior Physician c
Age: Resident
Years of working experience:
c
Nurse
c
Nurse’s aide
in the department:
Have you previously taken part in an organ donor care?
Yes
c
No
c
Is NTIC sometimes decided or performed in your ward?
Yes
c
No
c
Are you personally in favour of organ donation?
Yes
c
No
c
What do you think of NTIC for organ donation? c c c c c
Useful Understandable Obligatory Shocking Degrading
To allow the transfer of a potential organ donor from a standard care ward or from the Emergency Department to an ICU, you think it is necessary to verify: c c c
the advance patient’s consent the consent of the family the expression of patient’s opposition because of presumed consent rule
What are your feelings about handling of the potential organ donor in ICU? c c c c c c c
It entails a higher workload It entails a particular specific workload It is neither disturbing nor unpleasant I don’t like it. That disturbs me, makes me uncomfortable. I object to this practice. It is the continuity of the patient’s care I appreciate to take part in this particular care I want to take part
What is your state of mind when about to care for such a potential organ donor patient? c c c c
I am motivated by the prospect of organ grafting I am driven by the technical challenges I am attentive to relationship with the family I am personally touched by the situation 11
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It leaves me cold. I am not interested I am relaxed: It is the usual management
Facing the imminent death of a potential organ donor, you usually experience: A feeling of failure An important psychological suffering
Yes c Yes c
No c No c
In your opinion, the support of the potential organ donor’s family or relatives is: Particular Complex Conflicting Identical to other families in ICU
Yes c Yes c Yes c Yes c
No c No c No c No c
Did you receive a specific training regarding interview with families of potential organ donors? Yes c No c For nurses: Do you usually take part in interview with families aiming at finding out the will of the patient regarding organ donation? c c c c c
Always, because I want to Sometimes, when the workload of the day is light Only when the doctor asks me to come Never, because I don’t want to I would like but the doctors did not
For nurses’ aides: Would you like to take part in interview with families aiming at ascertaining the will of the patient regarding organ donation? Yes c No c For nurses: If you had rather not to participate, do you think that a specific training may help change your mind? Yes c No c Did you receive a specific training regarding the management of the brain dead patient? Yes c
No c
Do you consider brain death diagnosis as real death diagnosis?
No c
What is advance announcement? and what are your comments on it?
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Yes c
