Medical Law: Text, Cases, and Materials

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Thirdly, the purpose of pre-contractual disclosures may be different from medical disclosures in two important ways. First, although, as Howells points out, ‘regulatory policy is no longer fixated with the idea of a malevolent trader trying to con consumers but, rather, focuses on the asymmetries of information between trader and consumer’, 33 retailers are nevertheless trying to sell their products and services to consumers. If retailers are under an obligation to disclose certain information to potential consumers, they may deliberately include it in their ‘small print’ terms and conditions, which they know are seldom read. 34 Even for patients who are ‘decision averse’, 106 pre-treatment discussions may nevertheless serve several important purposes. Talking to a patient about her condition and its treatment can—if done well—be a way of demonstrating that she is being taken seriously. Information can also be reassuring and help patients to prepare themselves for what is going to happen. As Manson further explains: One is I knew that technically by the law of New South Wales, we were breaking that law. [Another parent] kind of put my feelings in that regard at ease in saying "well, if they arrest you for it, they’re going to arrest hundreds of other people who have done exactly the same thing that you’re thinking of doing", which made me feel better about being more open about it. The process of giving birth is rightly termed ‘labour’. It is hard work, often painful and sometimes dangerous. It brings the pregnancy to an end but it does not bring to an end the changes brought about by the pregnancy. It takes some time for the body to return to its pre-pregnancy state, if it ever does, especially if the child is breast fed. There are well known psychiatric illnesses associated with childbirth and the baby blues are very common … The social and legal developments which we have mentioned point away from a model of the relationship between the doctor and the patient based on medical paternalism. They also point away from a model based on a view of the patient as being entirely dependent on information provided by the doctor. What they point towards is an approach to the law which, instead of treating patients as placing themselves in the hands of their doctors (and then being prone to sue their doctors in the event of a disappointing outcome), treats them so far as possible as adults who are capable of understanding that medical treatment is uncertain of success and may involve risks, accepting responsibility for the taking of risks affecting their own lives, and living with the consequences of their choices. 10

Identifying and trying to correct this sort of misunderstanding should be as routine and essential a component of the informed consent process as the disclosure of material risks and alternatives. 84 In our study, potential reproductive travellers had sought peer-to-peer information, advice and support from fellow members of internet forums and Facebook groups. This often involves users requesting information about other people’s experiences at specific overseas’ clinics or agencies, which fellow forum-users will answer. 48 As Tom says: An underlying regulatory assumption is often that treatment at home is ‘better’ than the international alternatives. Implicit here is the premise that the law will best protect patients through discouraging international travel. Here, the patient experience diverges. It is clear that patients paying for treatment overseas feel as though they are more in control of their treatment, and that, in contrast to their experience of domestic fertility services, they do not have to be grateful for what they receive. Indeed, in many of our interviews patients have praised the standard of care they received overseas, considering it superior to that available at home. Opting out of local, regulated services is not necessarily always an unwelcome last resort then, but may have positive advantages for some patients. If this is the case, we should be interested in listening to what patients say is ‘better’ about treatment overseas, rather than just dismissing their accounts as wishful thinking.I think also a con of the altruistic system in general is that a really sort of fuzzy line of what can and can’t be considered a surrogacy expense. So you’re always sort of worrying like oh am I breaking the law by reimbursing this. There’s no real sort of set list of what you can and can’t pay for and I think that causes anxiety for surrogates as well. Jill Peay'Mental Health, Mental Disabilities and Crime' in A. Liebling, S. Maruna and L. McAra (eds) The Oxford Handbook of Criminology6th Editon, (2017) [FORTHCOMING] One of the Canadian agencies we spoke to assigned a full-time support worker to each surrogate and a different employee to support each set of intended parents. The agent, Sally, explained that these workers played an invaluable role in resolving issues and ensuring that disputes did not arise in the course of the relationship between the parties. In contrast, some of the intended parents who undertook unpaid surrogacy within Australia felt that, after the clinic’s initial counselling session, they were ‘left on their own’. For example, Lachlan describes the limited service provided by the Australian clinic that he and his wife attended: Whose Death is it Anyway? Euthanasia and the Medical Profession’ (2004) 57 Current Legal Problems 415-442 A gap between what matters to experts and what matters to patients is also evident in relation to the law, including but not limited to criminal prohibitions, citizenship and the rules of legal parentage. For example, in our study, it is striking how few intended parents of children born through surrogacy had sought legal formalisation of their relationship. Tom, who had undertaken surrogacy in India said:

In this journal, Arvind and McMahon have drawn attention to one way in which the judgment in Montgomery, in fact, diverges from the GMC’s partnership model of decision making. 8 Lords Kerr and Reed pointed to the increasing tendency to regard patients as rights holders, and ‘as consumers exercising choices’, 9 to whom what looks like the principle of caveat emptor might sometimes apply: Crucial to this ‘behavioural critique’ is the recognition that the failure to understand disclosures is not, as is sometimes assumed, confined to people who are especially vulnerable. Even if information disclosures are more likely to be used by ‘the more affluent, well-educated middle-class consumers’, 48 the tendency to misunderstand disclosures and misread information, is certainly ‘not limited to the uneducated and unintelligent’. 49 With Huseyin Naci et al ‘Generating comparative evidence on new drugs and devices before approval’ (2020) 395 The Lancet 986-997. Informed Consent and the Impotence of Tort’ in S. McLean (ed) First Do No Harm(Aldershot, Ashgate, 2006) 273-86Introducing Feminist Legal Theory’ in J Penner, D Schiff and R Nobles (eds) Introduction to jurisprudence and Legal Theory: Commentary and Materials(Butterworths, 2002) 779-853 (with Nicola Lacey) Although the internet is the primary source of ‘soft’ information about the experience of fertility treatment, it is also worth noting the growing popularity of fertility and surrogacy ‘fairs’ or ‘roadshows’, which are huge exhibitions in which visitors can gather information from regulated clinics and the local regulator, while also meeting people from overseas clinics and ‘alternative’ therapists. Discussions about one’s need for fertility services have emerged from the strict confidentiality of the doctor-patient relationship to become instead a marketing opportunity for private providers. But while these ‘fairs’ provide clinics with the chance to sell their services, potential patients also value the opportunity to find out if they feel a ‘connection’ with the clinic staff and their approach. It is, of course, important to recognise that patients’ appetite for information, and their understanding of it varies considerably. Not only are there differences between patients, but the same patient’s preferences may vary over the course of her lifetime, and in response to different illnesses. Patients who suffer from chronic conditions may ‘become experts in their own conditions and sometimes know more than generalists (such as their GPs) about symptoms and management options’. 71 At the same time, as Arvind and McMahon point out, there is evidence from patient survey data that other patients may struggle to understand or retain the information that they receive as part of the informed consent process. 72 Information about risk is notoriously difficult to understand, 73 and the way in which information is framed can be critical: if patients are told that 90% of people are alive five years after having an operation, they are more likely to consent than if they are told that 10% are dead. 74 Patients’ ‘pathologies of reasoning’ 85 are not confined to over-optimism. As King and Moulton explain, patient comprehension may also be affected by ‘availability bias’, where patients ‘overestimate their risk of contracting a condition that receives substantial media coverage, such as breast cancer’; ‘compression bias’, which involves ‘patients overestimating small risks and underestimating large ones’; ‘small numbers bias’ where patients ‘misinterpret their individual risk based on a small number of known cases (my two friends both had complications after their hysterectomies, so I probably will too)’; and ‘miscalibration bias’ which involves patients being ‘overly confident about the extent or accuracy of their knowledge’. 86

In addition, patients do not necessarily take medical decisions after having received information about a treatment’s risks and benefits, which they have weighed up in the light of their values. In practice, it is not uncommon for patients to have already made the decision to be treated before they encounter the doctor who is responsible for telling them about the treatment’s risks and benefits. 87 Some patients base their decisions on intuition or instinct, 88 or ‘seize on a single aspect of a problem and make it the basis for their choice’, and once they have done that, ‘any new evidence is taken to confirm that choice’. 89 When facing a cancer diagnosis, for example, patients commonly express a preference for invasive surgery ‘even when they would be better off doing nothing’, because of their ‘intuitive belief that cancers should not simply be treated but should be removed’. 90 Sauder and Parker’s research with individuals who had donated a kidney to their child or sibling found that most ‘experience the decision to donate as automatic’. 91 Childless by circumstance – Using an online survey to explore the experiences of childless women who had wanted children' Reproductive Biomedicine and Society Online (2021) Vol.12 pp.44-55 (with Dilan Chauhan and Joyce C. Harper) A response to Saviour Siblings: A Relational Approach to the Welfare of the Child in Selective Reproduction' (2015) 41 Journal of Medical Ethics 929-30Brown P, Stahl D, Appiah-Kusi E, Brewer R, Watts M, Peay J, et al. (2018) 'Fitness to plead: Development and validation of a standardised assessment instrument'. PLoS ONE13(4): e0194332

As Howells has pointed out ‘the provision of information is one of the key tools available to enhance consumer protection’. 40 According to classical contract theory, information provision serves multiple desirable goals: Regulating Non-Invasive Prenatal Testing: the view from the UK' (2014) 50 Japanese Journal of Law and Political Science 9-19.Essentially then, legal advice is ‘almost pointless’ for an unviable contract, which nevertheless is capable of going some way to protect the rights and liabilities of the parties throughout the arrangement. No, we never had a lawyer take us through contracts. So the contracts were, you know, we went through the contracts with the agent and they were in English and in Thai but again, I don’t think there would be much to be gained by going through that with a lawyer because I’m not sure — we were happy with what was actually written in the contract, but some of it I think wouldn’t actually be legally binding if it was actually tested in court and things like that, because of the fact that it was quite a legal grey area Some of our interviewees from Australian jurisdictions where criminal prohibitions on commercial surrogacy have extra-territorial effect took a calculated gamble. Isaac and his partner Gordon entered into a surrogacy arrangement in Thailand. They understood that they were breaking the law but believed that, because so many other families had not been punished or detected, that they too would be unaffected: Challenging the comparison in Montgomery between patients and “consumers exercising choices"'(2021) Medical Law Review online first