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Ventilating the debate: elective ventilation revisited
  1. Dominic Wilkinson
  1. Correspondence to Dr Dominic Wilkinson, Department of Neonatal Medicine, University of Adelaide, 72 King William Rd, North Adelaide, South Australia 5006, Australia; dominic.wilkinson{at}adelaide.edu.au

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This issue of the Journal of Medical Ethics features a special symposium on ‘elective ventilation’ (EV). EV (also known as ‘non-therapeutic ventilation’ (box 1)) was originally described in the 1990s by doctors working in Exeter in the UK.1 At that time there was concern about the large shortfall in organs for transplantation. Patients could become organ donors if they were diagnosed as being brain dead, but this only ever occurred in patients on breathing machines in intensive care who developed signs of brainstem failure. Doctors wondered if there were patients dying outside intensive care who, if they were ventilated, could become brain dead and hence eligible to donate their organs. They embarked on a process of identifying patients who were dying who would not normally be taken to intensive care because their prognosis was judged to be too poor, and then ‘electing’ to insert breathing tubes when they stopped breathing.1 With the consent of family members the patients were supported in intensive care until they were diagnosed as having signs of brain death, or until the family and doctors together judged that this was unlikely to occur.1 The Exeter team saw a 50% increase in their numbers of organs for transplantation.

Box 1
  • Definition of elective ventilation

  • Elective ventilation (EV) is the provision to a patient of intensive medical treatment(s) with the sole purpose of facilitating organ donation, in the absence of an expected medical benefit.

EV was a controversial practice at the time. There were a number of papers written from points of view defending2 ,3 and criticising it.4 A Department of Health guideline in 1994 concluded that EV was not in the best interests of patients and was therefore unlawful5; subsequently, the practice effectively ceased.2 However, debate about EV has not gone away,6 and in the last 12 months a discussion paper from the British Medical Association has suggested that EV be reconsidered.7 In late 2011 the National Institute for Health and Clinical Excellence (NICE) published a report endorsing stabilisation of patients who are critically ill until their wishes about organ donation could be clarified,8 a practice that potentially shares some features with EV.9 Intensive care doctors in France and Sweden have also recently called for public debate about EV.10 ,11 In response to these developments, the Journal of Medical Ethics initiated an open call in 2012 for papers exploring the ethics of EV. Included in the call was a description of a hypothetical case affected by the NICE recommendation (box 2). The papers all underwent peer review, and those that were accepted are included in this issue.

Box 1
  • A potential case of elective ventilation

  • Mary is 62 years old. She is brought to hospital after she collapsed suddenly at home. Her neighbour found her unconscious, and called the ambulance. When they arrived she was deeply unconscious and at risk of choking on her own secretions. They put a breathing tube in her airway, and transported her urgently to hospital.

  • When Mary arrives she is found to have suffered a massive stroke. A brain scan shows very severe bleeding inside her brain and is described by the x-ray specialist as ‘devastating’. She is not clinically brain dead, but there is no hope. The emergency department doctors have contacted the neurosurgical team, but they have decided not to proceed with surgery as her chance of recovery is so poor.

  • In Mary's situation, the usual course of events is to contact family members urgently, to explain to them that there is nothing more that can be done, and to remove her breathing tube in the emergency department. She would be likely to die within minutes or hours. She would not be admitted to the intensive care unit (ICU): if called, the ICU team would be likely to say that she is not a ‘candidate’ for intensive care. However, another possibility is that instead of the above, Mary would be admitted to intensive care. Extra medical procedures and treatments would be provided if needed to stabilise her, until there had been a chance to talk to Mary's family about the possibility of organ donation. This may provide enough time to find out whether Mary would have liked to donate her organs. This may take some hours, or perhaps even a little longer. If Mary's family take a while to agree to organ donation, she may have become brain dead in the meantime. Alternatively, intensive care can be withdrawn in controlled circumstances, allowing her organs to be retrieved after her heart has stopped beating. If it turns out that the family decline donation, life support will be stopped in intensive care.

‘EV’ was initially used before diagnosis of brain death. However, the papers in this issue highlight that there is now a wide spectrum of practices and situations that could fall under this rubric. John Coggon distinguishes between basic and complex forms of EV, on practical and epistemic grounds (where the epistemic issue concerns the nature of the patient's wishes about organ donation).12 Grant Gillett points out that at one end of the spectrum lies a practice which is widely accepted: the continuation of intensive care for a patient who has already been diagnosed as being brain dead until transplantation teams are ready.13 One reason for revisiting EV is that the ethical issues are very similar to those involved in other antemortem interventions associated with organ donation.14 The recent renewed attention to donation after cardiac death (DCD)15 means that EV is now a possibility for a much broader group of patients.16

Are there reasons for distinguishing between different types of EV? Should we treat cases like that of ‘Mary’ differently from the Exeter cases? As noted by Coggon,12 there is no intrinsic legal distinction between continuing ventilation and commencing ventilation, and ethicists have long argued that there is no ethical distinction between the two, other things being equal.17 One practical difference is that starting treatment may involve extra burdens for the patient, for example, insertion of needles or tubes, albeit these burdens can (and should) be alleviated by appropriate anaesthesia/analgesia. Are forms of EV associated with brain death (heart-beating donation) ethically different from those associated with DCD? The papers in this issue do not identify a relevant difference, however, one traditional concern about EV—the possibility of the patient surviving in a persistent vegetative state—might be less of a concern for DCD. Potential DCD donors are usually physiologically unstable and anticipated to die quickly in the absence of life support. There is no empirical data to quantify this risk associated with EV.

The papers here address different parts of the debate. Two papers provide novel non-utilitarian arguments in favour of EV, and counter traditional objections. De Lora and colleagues provide a Spanish perspective.18 They suggest that what could be regarded as EV in the UK is standard care in Spain, and simply reflects a difference in the timing of limitation of support. Whereas UK intensive care units (ICUs) work hard to avoid admitting patients with poor prognosis to intensive care (in order to ensure the availability of ICU beds), in Spain such patients are usually ventilated and taken to the ICU. Following further assessment, if their outlook is confirmed as being poor, intensive care may be withdrawn, allowing patients to become potential donors. De Lora et al argue that this practice promotes rather than threatens the dignity of patients. They contend that EV may allow better assessment of prognosis, improved symptom management, and supports the patient and family's desire for some good to come out of a tragic situation.18 Grant Gillett addresses the problem that in many situations the wishes of patients with regard to EV are unknown. He argues that in such situations there should be a presumption in favour of donation. Not to use organs is a ‘waste of something with intrinsic and complex value’. He suggests that the inherent relational nature of human beings generates an objective ‘solidarity’ interest in improving the well-being of others. On this basis, whether or not we have indicated a desire to donate, each of us has an interest in our organs being donated after our death.13

Two groups of clinicians address practical issues if EV were to be restarted. Baumann et al19 cautiously propose a set of criteria that might be used to delineate patients for EV prior to heart-beating or non-heart-beating organ donation. Patel explores one option for overcoming the problem of lack of explicit consent. He suggests that it may be possible to identify patients with untreatable brain tumours who could provide advance directives authorising EV.20

Other papers address the legal status of EV in the UK. John Coggon notes that the legal principle of ‘best interests’ has evolved since EV was first debated. A patient's best interests now potentially include non-medical factors, including their desire to donate their organs. Coggon argues that instituting intensive care would be lawful where it does not risk harm to the patient, and would potentially achieve an aim that the patient valued.12 McGee and White disagree; they argue that the broad legal interpretation of best interests cannot include situations where the patients’ wishes are unknown.21

It is interesting to note how the debate over EV has shifted over time. Papers by legal scholar David Price mark the paradigm shifts in practice and the law that have taken place.5 ,6 While in 1997, Price noted that EV was unlawful, in 2011 his position had reversed: ‘Society and clinicians involved with end-of-life care must grasp the nettle and recognise that the wish to be an organ donor … may, indeed must, often influence how the treatment of the dying or moribund patient is managed’.6 In 2000, Grant Gillett coauthored a paper questioning whether EV was ever justifiable, strongly criticising it on the basis of a lack of explicit consent, inadequacy of third party consent, and a risk of harm to patients.4 In this issue Gillett is considerably more positive, describing it as ‘ethically defensible’ as long as there is careful attention to minimise harms to the patient, public perception of organ donation, and ICU staff.13

Should EV be embraced as part of policy for organ donation? One important step before that occurs is a wider public and political discussion about organ donation and end-of-life care.12 ,16 Emmerich argues that this may require expanding the options available on the organ donor registry to include EV.16

The aim of this symposium was to promote and enrich just such a debate about EV and related practices. Six of the seven papers here appear to endorse EV at least in some circumstances. While these papers do not include all viewpoints on this issue, (those with alternative views would be welcome to submit letters and papers to the journal) the arguments collected here suggest that it may be time to breathe new life into EV.

References

Footnotes

  • Competing interests None.

  • Provenance and peer review Commissioned; internally peer reviewed.

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