Recent eLetters

However else they might be described, the obviously living, functioning, bodies of 'brain stem dead' organ donors are certainly not cadavers - which are dead bodies, corpses (OED). The perpetuation of their misrepresentation, unfortunately propagated by the Department of Health[1] in 1983, prejudices all attempts to assess the true level of public acceptance of organ transplantation practice.

1. Cadaveric organs for transplantation. A Code of Practice including the diagnosis of brain death. Health Departments of Great Britain and Northern Ireland, February 1983.

Conflict of Interest:

None declared

Dear Editor,

We read with interest the paper by Chenaud and colleagues. Patient preferences regarding consent for research into critical illness are an important and poorly researched area and they are to be congratulated for their work.

The poor response rate in their study is a serious limitation the authors acknowledge but even accepting this we would draw different conclusions.

As the authors correctly state, responses from patients and relatives during an ICU stay are "prone to bias due to anxiety, depression and coercion". The fact that 25% of matched relative patient pairs did not feel free in their decision to participate in a study, despite answering the questionnaire 3 years later, reinforces the belief that ICU situations make coercion a strong possibility. There is however little value in confirming that patients relieved of these influences can, and would wish to, consent for inclusion in research. The pressing question is whether patients and relatives can take autonomous decisions regardless of such influences, for that is what they are being asked to do. If we determine that patients cannot reliably make truly autonomous decisions in such circumstances, then additional or alternative procedures will have to be adopted if research in this population is to continue. This remains the case regardless of patient and relative views on the issue years after their admissions.

Yours sincerely

Dr. Daniel Harvey, Specialist Registar & Dr. Dale Gardiner, Consultant, Intensive Care Unit, Nottingham University Hospitals, UK.

Conflict of Interest:

None declared

Dear Sir

The article by Dr Hobson-West (The role of public opinion in the UK animal research debate) contains an interesting discussion about the extent to which public opinion should guide the ethical debate about animal research (and indeed other controversial issues).

Our view is that it is a key component in the debate. The cost:benefit test which lies at the heart of the UK legislation is a value-laden judgement, albeit one informed by scientific knowledge. Is it ever right to inflict physical suffering on an innocent individual (human or non-human), without consent, when he or she is not intended to benefit from the suffering? How much suffering (if any) is acceptable? Does it depend on the species and, if so, why? Should it depend on whether a disease in question is life-threatening or debilitating?

Should society if necessary just do without certain products, such that we do not need to worry about their safety? What about fundamental research, from which the benefits are by definition speculative. Should the researcher be required to demonstrate that there is a realistic chance that his use of animals will lead to significant societal benefit? There is no arithmetical formula to be applied to these ethical questions. In a mature democracy, how they are answered should reflect public opinion. They cannot be the sole preserve of researchers, and corporations should certainly not be allowed to set the ethical boundaries.

But whatever account is taken of public opinion, there can, surely, be no question that it should be as informed as possible. The article fails to address this key question. Animal experiments are conducted under conditions of great secrecy, with researchers deciding what (if anything) to put in the public domain.

This is the wrong approach. Given that animal experiments would, but for the special protection accorded by the law, otherwise constitute a criminal offence, the default position should be that everything should be publicly available, save for personal and genuinely commercially sensitive information. In that way, public opinion can be as informed as possible, and the ethical settlement will reflect the views of the populace as a whole rather than a self-appointed elite.

Michelle Thew
Chief Executive
BUAV

Conflict of Interest:

None declared

Dr Miller's argument is based on the premises that (1) doctors must not kill patients; (2) brain-dead patients are alive; (3) procuring vital organs from brain-dead patients would cause their death (p618). As Dr Miller acknowledges, it is by no means certain that premise (1) stands, as doctors intentionally kill patients every day and this is accepted and acceptable to societies in which it takes place. The second premise is also debatable. Dr Miller takes the view that the condition of whole brain death is equivalent to continuing life, but I would argue that whole brain death is death. There is only one organ death that matters, only one organ death that cannot be replaced by technology or allogeneic transplantation, only one organ death that removes from us everything that we think of as human and ourselves, and that is the brain. There is no need to think in terms of death of the human and death of the organism as if they were fundamentally different in character. All that matters to us is whether or not our brain is dead. The diagnosis of death by whole brain criteria identifies a situation where there is irreversible loss of function of this organ. Radiological tests of cerebral blood flow are used in some jurisdictions to confirm the clinical diagnosis of brain death. In these cases there is no blood flow to the brain (substantially different from the case in ventilator dependent quadriplegia and in persistent vegetative state). Where there is no flow there cannot be any function. The diagnosis of death by cardiopulmonary criteria, which includes an assessment of brain function, is a convenient bedside assessment that merely identifies a situation where the brain cannot, at present, function. Usually this is accepted as final, and the situation allowed to proceed to irreversible brain death, but in some cases we choose to intervene and attempt cardiopulmonary/cardiocerebral resuscitation. So, death by cardiopulmonary criteria does not provide certainty as a proportion of those who fulfil the criteria could and do survive. It is not a 'gold standard' test for death. Given that what matters is irreversible death of the brain, Dr Miller's second premise fails, and the third with it.

Body integrity identity disorder is a very rare condition where sufferers experience longstanding anguish because there is a mismatch between their bodies, and their internal image of how their bodies should be. Most typically, the person is deeply distressed by the presence of what they openly acknowledge as a perfectly normal leg. Some sufferers request their limb be amputated.1 We and others have argued that such requests should be acceded to in carefully selected patients.1-4 As a result our group at the University of Sydney is developing a programme to better understand and treat BIID, which will offer amputation if appropriate.

In a recent paper, Patrone argues that such amputations should be prohibited.5 He suggests that authors supporting amputation in BIID depend on analogies with more familiar conditions and then claim that the “the desires, choices and requests of BIID patients should be held to exactly the same standards and treated with exactly the same respect as the desires, choices and requests of any more conventional patient”.5 He believes that these analogies are invalid and that therefore the arguments for amputation are invalid.

Patrone concentrates a great deal upon whether or not a decision to have a particular medical intervention is to be regarded as “rational”. Unfortunately he makes no attempt to define what he means by “rational”, so it will be necessary to clarify this before proceeding. We will take a decision about medical treatment to be rational if it manifests reasonable practical reasoning that is based on agreed or accepted premises.

COSMETIC SURGERY ANALOGIES

Patrone seems to believe that the singularly unusual nature of the BIID sufferer’s request may be enough to conclude that they are “as a type” incapable of making a rational decision about amputation. Believing that supporters of amputation may share this view, he suggests that supporters draw analogies with people who request radical cosmetic surgery, because, he says, in these cases “whether or not the patient’s motivations are rational is taken to be irrelevant to their ability to make this decision”.5

He has completely missed the point of these analogies. Supporters of amputation do not draw analogies to cosmetic surgery because surgeons don’t care if a patient’s request is rational. Cosmetic surgeons go to great lengths to assure themselves that their patients’ requests for surgery are valid.6 Supporters of amputation draw analogies to radical cosmetic surgery to demonstrate the very thing Patrone finds so hard to understand - that surgeons will ethically accede to requests for even bizarre body modification if the patient is competent to request it, and if it is generally in the patient’s best interests overall.

Patrone also suggests that the cosmetic surgery analogy is flawed because amputation, unlike cosmetic surgery, “necessarily entails permanent disability” and “serious harm”.5 There are two problems with this line of reasoning. First, many requests for body-modification, frequently acceded to, are permanent and do carry a degree of associated disability. The prime example of this, an analogy that Patrone studiously avoids throughout his paper, is gender reassignment surgery, but irreversibility and some measure of disability are also associated with a variety of other body modifications such as facelifts, breast reductions and augmentations and penile implants. The second problem is that the harm that will follow such modifications, has to be weighed against the benefits that such operations are aimed at achieving.

Some women who undergo breast reduction will permanently lose their ability to breastfeed. However, for women who have spent their lives uncomfortable with the size of their breasts, or who are burdened by related backache, the harm associated with an inability to breastfeed is seen as minor compared with the relief of suffering they hope to gain with surgery. We have now seen five patients with BIID who have wanted a leg removed. All recognised that amputation would involve a degree of disability, but all regarded this as a small price to pay to relieve their suffering. All were keen to obtain a prosthesis to minimise any disability.

THE JEHOVAH’S WITNESS ANALOGY

In their defence of amputation, Bayne and Levi suggest an analogy with Jehovah’s Witnesses’ refusal of blood products, to demonstrate that we should not ignore a patient’s request merely because we do not agree with the benefits that they feel they will accrue.2 Patrone attacks this analogy on acts/omissions grounds, suggesting that those who opt for treatment “divert medical resources away from other patients … put[ting] other patients in danger”, while those who simply refuse treatment, do not. This is simply wrong. Sometimes a patient’s decision to refuse treatment consumes considerably more resources than a decision to accept treatment. It is well known that Jehovah’s Witnesses’ who undergo major surgery consume considerably more resources than other patients – longer stays in ICU for example - precisely because they have refused blood products.7

PATRONE’S ANOREXIA NERVOSA ANALOGY

Having rejected analogies commonly used to support elective amputation, Patrone offers his own analogous condition to oppose it – anorexia nervosa. Patrone sees anorexia as “the best analogy with BIID”, because both disorders are thought to concern “a discrepancy between body type and body image, and both express themselves in patient choices that, were they respected would cause serious physical harm”.

In equating of anorexia with BIID, Patrone reveals a profound misunderstanding of the phenomenology of both conditions. Patients with severe anorexia nervosa believe they are too fat, even when their body weight is so low as to be virtually incompatible with life. They refuse food because they do not want to be “so fat”. Their decision not to eat cannot be regarded as rational because the premise that they are fat could not be accepted by anyone. People with BIID say that the presence of their limb does not comply with their internalised image of their body and this discord causes them enormous distress. There is no objective way of assessing a person’s internalised body image, and only indirect ways of assessing a person’s distress. Unless there are reasons for believing that the person is deliberately dissembling, we will tend to accept their report as true. If this premise is accepted, then, with no other available remedy for their distress, amputation, even with its inherent problems, seems a rational choice to make.

CONCLUSION

Requests for amputation in BIID are analogous to requests for cosmetic mammoplasty or gender reassignment surgery. People with BIID are deeply distressed by the presence of their limb, and some reason rationally that since other mechanisms aimed at relieving their suffering have failed, they will seek amputation in the hope that it may succeed. When Patrone arrogantly asserts that “BIID patients lack the perspective from which to make informed evaluative choices about their options (options that, it must be stressed, include living with the disorder as psychologically frustrated but able bodied)” it is abundantly clear that he doesn’t understand the disorder, for it is just this choice that many sufferers have spent their lives grappling with.

REFERENCES

1. Ryan CJ. Out on a limb: the ethical management of body integrity identity disorder. Neuroethics 2009;2(1):21-33.

2. Bayne T, Levy N. Amputees by choice: Body integrity identity disorder and the ethics of amputation. Journal of Applied Philosophy 2005;22(1):75-86.

3. Savulescu J. Autonomy, the good life and controversial choices. In: Rhodes R, Francis L, Silvers A, editors. The Blackwell Guide to Medical Ethics. New York: Blackwell; 2006.

4. Ryan CJ. Amputating healthy limbs. Issues 2009;86(March):31-33.

5. Patrone D. Disfigured anatomies and imperfect analogies: body integrity identity disorder and the supposed right to self-demanded amputation of healthy body parts. Journal of Medical Ethics 2009;35:541- 542.

6. Crerand CE, Franklin ME, Sarwer DB. Body dysmorphic disorder and cosmetic surgery. Plastic and Reconstructive Surgery 2006;118:167e-180e.

7. Savulescu J. The cost of refusing treatment and equality of outcome. Journal of Medical Ethics 1998;24:231-236.