Margot Brazier - Centre for Social Ethics and Policy, University of Manchester School of Law, UK
Jonathan Montgomery - Faculty of Laws, University College London, UK
Sylvie Delacroix - Birmingham Law School, University of Birmingham, UK
Emma Cave, Nina Reinach - Durham Law School, University of Durham, UK
Jean McHale - Birmingham Law School, University of Birmingham, UK
Atina Krajewska - Birmingham Law School, University of Birmingham, UK
At a Cross-roads? The Courts’ Shifting Apprehension of the Vulnerability at Stake in the Lay-Healthcare Provider Relationship
In the domain of healthcare, the debate relating to the articulation of standards by reference to which medical judgment may lend itself to judicial oversight has been dominated by questions relating to the appropriate disclosure of information. This focus on information disclosure has in turn insidiously contributed to levelling down the qualitative difference between the responsibility of healthcare professionals on the one hand, and that of all expert services providers on the other.
The rationale for the disclosure of known risks and side effects of medical intervention is to address the knowledge asymmetry that characterises most doctor-patient relationships and to (supposedly) empower patients to make informed choices. Presented like this, the challenge at stake does not differ in any way from that which characterises the lay-expert relationship in a wide range of applications. Informed consent sheets when embarking upon a guided mountain expedition are meant to address the same knowledge asymmetry.
Yet most people will have the intuition that there is an important difference between the choices that a healthcare professional is meant to empower and those at stake in a mountain expedition. The problem is that the courts’ overwhelming focus on information disclosure has obscured what mere disclosure cannot achieve: allowing patients to retain some active involvement – and hence a sense of authorshipMackenzie would talk of ‘autonomous agency’: C. Mackenzie, ‘The Importance of Relational Autonomy and Capabilities for an Ethics of Vulnerability’ in C. Mackeznie, W. Rogers & S. Dodds (eds.), Vulnerability: New Essays in Ethics and Feminist Philosophy (New York: Oxford University Press, 2014). – in the decision-making processes that are likely to shape their sense of self for some time to come. Section 2 starts by explaining why such empowerment matters. It does so by considering afresh Parsons’ sociological account of illness. Hugely influential, the latter account has unfairly been interpreted as backing the ‘epistemic inequality demanding paternalism’ stance encapsulated in the Bolam Test. Some careful reading reveals Parsons’ emphasis on a vulnerability that goes well beyond ‘mere’ epistemic imbalances.
Section 3 outlines why Montgomery – which limits the scope of the Bolam test – may be deemed a missed opportunity, because of its continued focus on epistemic vulnerability. This narrow focus leads to a regulatory intervention – removing information disclosure from the sphere of medical discretion – that is ill-suited to the end it seeks to achieve (patient empowerment). In contrast, Section 4 considers the empowerment potential inherent in the ‘duty to consult’, as put forward in Tracey. To live up to its potential, such a duty not only needs to reach beyond the confines of CPR decisions: Section 4.2. considers the extent to which opening the door to a fiduciary (rather than tort-based) understanding of responsibility could help in this respect. The move to a ‘duty to consult’ also needs to be backed up by some community-based, co-originated form of professional regulation. As an example of the latter, Section 4.1. highlights the process that has led to the deployment of the ‘recommended summary plan for emergency care and treatment – ReSPECT’ – across the UK.
Taken together, Sections 4.1 and 4.2 aim to show both the transformative potential inherent in the Courts’ recent delineation of a ‘duty to consult’ and the extent to which such transformation cannot stem from judicial intervention alone. Grassroots reflection – and activism across the whole of the professional community (including patients) – is key to re-imagining how health practices (not just health law) may live up to the responsibility concomitant with the vulnerability described in Section 2.
As a sociologist, Parsons’ theory focused on the normative expectations permeating (and permeated by) ‘modern’, capitalist social practices. His delineation of the normative expectations associated with what he called ‘the sick role’ is one of the best-known, yet often misunderstood aspects of his theory. Throughout his career, Parsons emphasized the fact that ‘illness is not merely a state of the organism and/or personality, but comes to be an institutionalized role’.T. Parsons, ‘The Sick Role and the Role of the Physician Reconsidered’, The Milbank Memorial Fund Quarterly Health and Society 53 (1975), 257-261. Because the ‘capacity for the effective performance of valued tasks’T. Parsons, Social Structure and personality (New York: The Free Press, 1964), 262. is typically compromised by illness, the latter entails some ‘deviance’ from the expectations that are normally associated with one’s societal roles.
For Parsons, the fact that, unlike immorality or criminality, the cause of this ‘deviance’ is not one’s disregard of societal norms, but rather one’s inability to conform to them,T. Parsons, Social Structure and personality (New York: The Free Press, 1964), 270. is important: (1) ‘that being in a state of illness is not the sick person’s own fault’T. Parsons, ‘The Sick Role and the Role of the Physician Reconsidered’, The Milbank Memorial Fund Quarterly. Health and Society 53(3) (1975), 262. is listed as the first of three ‘criteria’ that come with the ‘social role of being sick’.T. Parsons, ‘The Sick Role and the Role of the Physician Reconsidered’, The Milbank Memorial Fund Quarterly. Health and Society 53(3) (1975), 262. The other two ‘social-structural feature[s] of the sick role’ are: (2) ‘the claim of exemption from ordinary daily obligations and expectations’ and (3) ‘the expectation, if the case if sufficiently severe, of seeking help from some kind of institutionalised health service agency’.T. Parsons, ‘The Sick Role and the Role of the Physician Reconsidered’, The Milbank Memorial Fund Quarterly. Health and Society 53(3) (1975), 262. Since it is a misinterpretation of the latter ‘feature’ of the sick role that has had the most considerable influence upon legal thought, the rest of this section aims to correct this misconstruction.
The misunderstanding to be debunked stems from two factors put together. On the one hand, Parsons’ emphasis on the patient’s required ‘recognition of [her] helplessness, which is to be proven by seeking professional help’Z. Varul, ‘Talcott Parsons, the Sick Role and Chronic Illness’, Body and Society 16(2) (2010), 72-94. – (3) above – is often amalgamated with expected pliancy on the part of the patient. On the other hand, Parsons places great emphasis on the hierarchical asymmetry between ‘the role of physician as the highest grade of publicly certified expert in health care and the role of the sick person’:T. Parsons, ‘The Sick Role and the Role of the Physician Reconsidered’, The Milbank Memorial Fund Quarterly. Health and Society 53(3) (1975), 266. ‘the most general basis of the superiority of health agency personnel generally, and physicians in particular, seems to me to rest in their having been endowed with special responsibilities for the health of persons defined as ill (…)’.T. Parsons, ‘The Sick Role and the Role of the Physician Reconsidered’, The Milbank Memorial Fund Quarterly. Health and Society 53(3) (1975), 266.
The combined emphasis on physicians’ superiority and patients’ ‘helplessness’ has led to Parsons’ analysis of illness being deemed to encapsulate the supposedly inevitable passivity of the patient, whose ‘technical incompetence’ would call for benevolent paternalism on the part of the doctor. This line of reasoning – epistemic inequality demanding paternalism – has contributed to a long period of judicial deference towards ‘expert’ medical judgment. Yet Parsons was at pains to expose this clichéd interpretation of his work as ‘erroneous’.‘I have already noted that it is erroneous, as some interpreters of my previous work in this area have maintained, to consider the role of the sick person, notably in the capacity of patient, who is positively related to health care agencies, as that of a purely passive object of manipulation or “treatment”. Indeed, I should regard even the acceptance of such treatment as one type of active participation of the sick person. However, his activity very generally goes well beyond this. We might suggest that the level of activity is minimized for acutely ill patients, particularly when they are hospitalized and subject to the ministrations not only of physicians but of nurses and other hospital personnel. Even in these cases, however, some active participation in addition to merely accepting hospital treatment is generally involved. And, the less acute the mediate situation, the more likely it is that this participation will be substantial.’: T. Parsons, ‘The Sick Role and the Role of the Physician Reconsidered’, The Milbank Memorial Fund Quarterly. Health and Society 53(3) (1975), 270.
For our purposes, it is certainly unfortunate that Parsons’ emphasis on epistemic vulnerability has turned out to be the most influential aspect of his ‘sick role’, since Parsons’ analysis of illness actually illustrates a kind of vulnerability that is different from the ‘mere’ epistemic vulnerability that characterises all lay-expert relationships. To understand this difference, it is helpful to start from Parsons’ own formulation:
[T]he situation of illness very generally presents the patient and those close to him with complex problems of emotional adjustment. (…) suffering, helplessness, etc… constitute fundamental disturbances of the expectations by which men live (…) [F]or the ‘normal’ person illness, constitutes a frustration of expectancies of his normal life pattern. (…) He is often humiliated by his incapacity to function normally. His social relationships are disrupted to a greater or less degree.T. Parsons, The Social System (New Orleans: Quid Pro, LLC, 2012), 310-311.
In this passage, Parsons emphasises the extent to which the process through which we constantly seek to re-define ourselves in relation to others is likely to be affected by illness: it is not just a matter of not meeting social or professional expectations. It is also, most importantly, a matter of not being able to articulate one’s own aspirations as to the kind of person one wishes to become. It is as if one had no choice but to be – and become – ‘the ill person’, rather than the person one is gradually seeking to develop on the basis of others’ perceptions. Most cannot come to terms with the experience of being confined to the role of the ‘ill person’ – hence the reference to ‘humiliation’ in Parson’s account. In the context of chronic illness, CharmazK. Charmaz, ‘Loss of Self: A Fundamental Form of Suffering in the Chronicall Ill’, Sociology of Health & Illness 5(2) (1983), 168. highlights the fact that the persistent compromising of one’s ability to accrue what Parsons refers to as ‘esteem’ is concomitant with an eroded sense of personhood, or ‘loss of self’.
It is this eroded sense of personhood that gives rise to the particular type of vulnerability underlying the lay-professional relationship in healthcare.M. A. Fineman, ‘The Vulnerable Subject: Anchoring Equality in the Human Condition’, Yale Journal of Law and Feminism, 20(1) (2008), 1: Aside from this ‘social’ vulnerability (which is relational and context-specific), the lay-professional relationship in healthcare can also be marked by the vulnerability that stems from our physical frailty or what Fineman describes as the ‘universal, inevitable, enduring aspect of the human condition due to the fact that our existence, as ‘needy, enmattered beings’ Martha Nussbaum, Frontiers of Justice: Disability, Nationality, Species Membership (Cambridge, Harvard University Press, 2006), 278, is inherently fragile. This process of erosion – and its concomitant vulnerability – can be either moderated or intensified by the healthcare provider’s professional stance. An endeavour to understand a patient’s fears, priorities and aspirations – beyond illness – can play a big role in preserving a space for the patient’s ongoing endeavour to project her ‘social self’. Unlike the formal, systematic disclosure of risks and benefits associated with different therapeutic options, a professional’s commitment to building a genuine conversation is both demanding and central to acknowledging the very particular type of vulnerability at stake.
The next section highlights the Courts’ enduring focus on ‘mere’ epistemic vulnerability in the context of healthcare, and the extent to which there is any indication that the Courts may be moving towards acknowledging the distinct, ‘sense of self’ vulnerability described above.
The impact of the patient’s ‘passivity stemming from ignorance’ account that is (misleadingly) associated with Parsons’ influential sick role is still widely seen at play today. Regrettably, it can be said to have influenced a decision – Montgomery v LanarkshireMontgomery v Lanarkshire [2015] UKSC 11 (Montgomery). – that has otherwise been hailed as challenging the paternalism encapsulated in the Bolam Test, given the latter’s degree of deference to peer professional judgment. This section argues that the continuing influence of this Parsonian ‘passive patient’ account – and its (wrongheaded) association with an emphasis on epistemic inequality – is at the root of a ‘missed opportunity’, to use Jonathan Montgomery’s phrase.For Montgomery, the Court had an opportunity to develop an understanding of professional responsibility that does ‘promote (…) agency, not undermine it’: J. Montgomery, ‘Patient No Longer? What Next in Health Care Law?’, Current Legal Problems 70(10) (2017), 73. It traces the root of this missed opportunity to the Court’s retaining a narrow, epistemic understanding of the vulnerability underlying the healthcare relationship.
The Montgomery case has been welcomed by many commentators as a watershed decisionC. Dyer, ‘Doctors Should not Cherry Pick what Information to Give Patients, Court Rules’, British Medical Journal 350 (2015), 1414. because it restricts the scope of the Courts’ otherwise broad deference to clinical discretion: liability for failure to disclose an intervention’s risks or potential side effects is not to be assessed solely by reference to what constitutes reasonable medical practice according to peers. In other words, Montgomery asserts the Court’s authority to assess the extent to which disclosure obligations have been complied with. These disclosure obligations are no longer deemed to fall under clinical discretion. In the Montgomery case, this means that the adequacy of an obstetrician’s decision not to inform her diabetic patient – Nadine Montgomery – of the risk of shoulder dystocia (and the resulting risks of hypoxic injury for the child) can be assessed by the Court, without having to defer to peer judgment.For a more detailed, astute analysis of Montgomery, see J. Montgomery, ‘Patient No Longer? What Next in Health Care Law?’, Current Legal Problems 70(10) (2017). To support this conclusion, the Court argues that ‘the extent to which a doctor may be inclined to discuss risks with a patient is not determined by medical learning or experience’Montgomery v Lanarkshire [2015] UKSC 11,84. and therefore the ‘skill and judgment required are not of the kind with which the Bolam test is concerned’.Montgomery v Lanarkshire [2015] UKSC 11, 85. Disclosure decisions are highlighted as ‘attributable not to divergent schools of thought in medical science, but merely to divergent attitudes among doctors’ (Lords Kerry and Reid, Montgomery v Lanarkshire [2015] UKSC 11, 84). This attempt to tease out aspects of medical judgment that are specifically grounded in ‘medical science’ from those that are not results in a rather problematic fragmentation of expertise that is discussed in J. Montgomery & E. Montgomery, ‘Montgomery on Informed Consent: An Inexpert Decision?’, Journal of Medical Ethics 42 (2016), 89. In reaching this decision, the Supreme Court goes against the lower courts’ taking into account the fact that Nadine Montgomery was an educated, otherwise well advised patient whose relationship with her doctor was based on what is best described as a conversation about the planned delivery (and hence different from merely being at the receiving end of ‘disclosed information’). Instead the Supreme Court notes that ‘the social and psychological realities or the relationship between patient and her doctor’ mean that ‘few patients do not feel intimidated or inhibited to some degree’.Montgomery v Lanarkshire [2015] UKSC 11,58.
The above statement is particularly interesting from the perspective of this article. While it hints at a pretty general kind of vulnerability, the Court chooses to focus on its epistemic aspect only. For the Court, the fact that ‘few patients do not feel intimidated’ warrants an obligation to disclose all the ‘material risks involved in any recommended treatment, and (…) any reasonable alternative or variant treatments’.Montgomery v Lanarkshire [2015] UKSC 11, 87. Crucially, a doctor’s assessment of whether a riskInterestingly, in Burton v Webster [2017] EWCA Civ 62 at [35], the Court of Appeal states that the patient should informed of both risks and ‘uncertainties’: ‘Without intending to summarise the effect of Montgomery, in general terms the doctor's obligation (apart from in cases where this would damage the patient's welfare) is to present the material risks and uncertainties of different treatments, and to allow patients to make decisions that will affect their health and well-being on proper information. The significance of the risks and uncertainties, including the possibility of alternative treatment, being sensitive to the characteristics of the patient’. should be deemed ‘material’ – and hence warrant disclosure – hinges upon both what a ‘reasonable’ patient and what the ‘particular’ patient may find significant. This double-sided test, including both an objective and a subjective component, stems in large part from an assumption that a doctor’s endeavour to take a patient’s aims or circumstances into account is liable to reflect only the doctor’s own, individual and, one might add, ‘biased’ attitude.In this respect, see notably Lady Hale’s take on the motives underlying Dr McLellan’s decision not to inform Mrs Montgomery of the risks of shoulder dystocia. Hence, the Court’s imposing an objective test – by reference to the ‘reasonable patient’ – alongside the subjective one.Note that the objective component of this test is also meant to address the possibility of ‘liability in favour of a patient who was irrational or wildly eccentric yet genuine’, to quote Mr Justice Green in Thefaut v Johnston [2017] EWHC 497 (QB), [54]. It is unclear, however, whether this double-sided test is in fact capable of supporting the type of doctor-patient relationship intended by the Court. Along this line, Mr Justice Green (as he then was) notes that:
What is less clear is as to the actual extent to which subjective factors relating to the actual patient are relevant since the greater degree of subjectivity inserted into the assessment the further one departs from the standard of the reasonable patient. Some characteristics of a patient are obvious (…) Other personal factors may be less self-evident.Thefaut v Johnston [2017] EWHC 497 (QB) at [55].
Problematically, in their review of the ‘far reaching implications of Montgomery for risk disclosure in practice’,S. Devaney et al., ‘The Far-Reaching Implications of Montgomery For Risk Disclosure in Practice’, Journal of Patient Safety and Risk Management 24(1) (2019), 25. Devaney and others note that:
there are signs that some judges remain preoccupied with the objective element of the test -to the exclusion of the subjective component (…) This can be seen in the reliance on medical evidence pertaining to percentage rates of occurrenceHere S. Devaney et al., ‘The Far-Reaching Implications of Montgomery For Risk Disclosure in Practice’, Journal of Patient Safety and Risk Management 24(1) (2019), 27 are referring to A v East Kent Hospitals University NHS Foundation Trust [2015] EWHC 1038 at [84], where the 1 in 1000 risk of an unborn baby suffering from chromosomal abnormality causing severe disabilities was deemed a theoretical and background risk, without taking into account the way in which this risk – had it been disclosed – would have been perceived by that particular patient. A v East Kent was endorsed in Tasmin v Barts NHS Trust [2015] EWHC 3135 (QB) [115]. In Montgomery, by contrast, the Supreme Court clearly asserted (at [89]) that, since what constitutes a material risk is both fact sensitive and patient sensitive, risk percentages are neither here nor there when it comes to assessing the materiality of a risk. See also Thefaut v Johnston [2017] EWHC 497 (QB) on the importance of taking into account the subjective standpoint of the patient. (…) under mining the ability of patients to bring their own experience, interests and preferences to the process of shared decision-making.S. Devaney et al., ‘The Far-Reaching Implications of Montgomery For Risk Disclosure in Practice’, Journal of Patient Safety and Risk Management 24(1) (2019), 27.
The above raises interesting, more theoretical questions about the optimal way of constructing the ethics-regulation interface in spheres where highly contextual, professional judgment is needed.This theoretical challenge is discussed in detail in B. Wagner and S. Delacroix, ‘Constructing a mutually supportive interface between ethics and regulation’, forthcoming, available at
https://papers.ssrn.com/abstract=3404179. The type of engagement required to build a relationship, which adequately facilitates a process of shared decision-making necessarily presupposes the preservation of a sphere of discretionary judgment on the part of the healthcare provider.
The current legal position asks of each healthcare provider close-to-impossible mental feats. While the shared-decision making demands that each consultation be unimpeded by a-priori categorisations that would stand in the way of a sensitive acknowledgment of each patient’s specificities, the objective, ‘reasonable patient’ constraint seemingly calls for the opposite. From that perspective, a healthcare provider must ask herself what a ‘reasonable patient’ would want to know. Given the legal liability implications, it is unsurprising if healthcare providers opt for a defensive, blanket disclosure.Along this line, Mills and Epstein note that ‘in the short run, the standard set by Montgomery is likely to be difficult to apply in practice. In a contractual, increasingly litigious culture, a culture wherein responsibility and blame must be privatised, doctors must lose interest in making judgments of any kind if they want to protect themselves. They will therefore be inclined to go beyond their new legal duty and disclose even the smallest risks, regardless of their relevance to the ‘reasonable patient in the patient's position’ or to the patients themselves’, see F. Mills & M. Epstein, ‘Risk Disclosure After Montgomery: Where Are We Going?’, Case Reports in Women’s Health 21 (2018), 2. For a less negative take on the challenges underlying a patient-centred, clinical approach, see H. Bolton, ‘Consent After Montgomery: Clinical Considerations’, in S. Jha & E. Ferriman (eds.), Medicolegal Issues in Obstetrics and Gynaecology (New York: Springer, 2018), 15-18. In this context, the chances of building an adequately sensitive relationship of trust – which typically involves a transfer of discretion‘[A] trusting relationship between doctor and patient typically involves the granting of discretion in the light of [knowledge and power] asymmetries (…) Consider the questions that are often asked even when the likelihoods and risks have been presented: (…) ‘What would you do if you were in my shoes?’ These are not requests for more information about the odds. Instead, they indicate a readiness to transfer some discretion to the doctor (…). In an atmosphere of trust, where the patient understands what is happening, giving discretion in this way does not infringe their autonomy: by removing some of the weight of uncertainty, it can enable it to function more effectively.’ Z. Fritz & R. Holton, ‘Too Much Medicine: Not Enough Trust’, Journal of Medical Ethics 45(1) (2019), 34. – are very slim indeed. In that sense, the current formalist focus on information disclosure may be deemed to be a ‘pathogenic’ response to vulnerability: ‘rather than enabling a person’s autonomy, they compound this sense of powerlessness and loss of agency and render her susceptible to new or different harms’.Mackenzie would talk of ‘autonomous agency’: C. Mackenzie, ‘The Importance of Relational Autonomy and Capabilities for an Ethics of Vulnerability’ in C. Mackeznie, W. Rogers & S. Dodds (eds.), Vulnerability: New Essays in Ethics and Feminist Philosophy (New York: Oxford University Press, 2014).
What if, by contrast, the Court had chosen to interpret its general acknowledgment of the fact that many patients feel ‘intimidated or inhibited’ as indicating a type of vulnerability that goes well beyond merely epistemic aspects? The feelings of intimidation or inhibition do not, I contend, merely stem from being faced with a learned professional of a certain status or privilege. At stake is also the fact that, in many instances, the choices that are to be made in a medical context contribute to, or are likely to have a lasting impact on, the deployment of one’s sense of self. While the disclosure of risks and side effects may ensure that a patient is freeFor a discussion of the interplay between liberty and autonomy arguments, and the extent to which the courts’ focus on the patient’s freedom from being left ignorant prioritises the former (liberty) over autonomy, see J. Coggon & J. Miola, ‘Autonomy, Liberty and Medical Decision-Making’, Cambridge Law Journal 70(3) (2011), 523. to make such choices in a minimally informed manner, it is unlikely to constitute the kind of engagementRichard Lehman helpfully emphasises that ‘Shared decision making implies that we have reached agreement about what kind of help people who come to us are seeking and what we have to offer. But the essential first part of the process – eliciting an understanding of the goals and preferences of the individual patient – is too often omitted or hurried through’: R. Lehman, ‘Sharing as the Future of Medicine’, JAMA Internal Medicine 177 ( 9) (2017), 1256. needed to allow a patient to remain as true as possible to her aspirations and priorities:For an example of the kind of engagement at stake, see P. Kalanithi, When Breath Becomes Air (London: Bodley Head, 2016) for an account of the role played by Emma, his oncologist, in making sure he remained as faithful as possible to the aspirations and priorities he articulated as a patient. this means being part of a processHere Manson and O’Neill would emphasise the contrast between the ‘communicative transaction’ model of informed consent, and ‘the conduit/ container model’, whose focus on ‘disclosure alone is not sufficient for (…) successful informed consent transactions. By emphasising content while neglecting agency, the conduit/container model downplays, even hides, some of the distinctive norms that must be met by effective communicative transactions.’ O. O’Neill & N.C. Manson, Rethinking Informed Consent in Bioethics (Cambridge: Cambridge University Press, 2007), 88. that takes into account her wider interests.On the need to interpret a patient’s ‘best interests’ in a way that explicitly encapsulates non-medical interests, see Re A (Male sterilisation) [2000] 1 FLR 549 CA. See also Sidaway v. Bethlem RHG [1985] 1 All ER 643 and Re MB [1997] 2 FLR 426 (CA) on the right of a patient to reject medical treatment for good reasons, bad reasons – or indeed no reason.
Some might argue that the latter ambition is laudable but utterly unrealistic in the harsh reality of contemporary medical practice. The GMC’s recent consultationGeneral Medical Council, ‘Review of Our Consent Guidance’, https://www.gmcuk.org/about/get-involved/consultations/review-of-our-consent-guidance. on the draft of its updated consent guidance was explicitly driven by an acknowledgment of the increasing time pressures on clinical practice. Mindful of the growing mismatch between the everyday realities of clinical practice and the guidance’s principles, the redrafting exercise aims to ‘support doctors and patients to have meaningful conversations and to make shared decisions’.General Medical Council, ‘Review of Our Consent Guidance’, https://www.gmcuk.org/about/get-involved/consultations/review-of-our-consent-guidance. Far from confining itself to a consumerist, ‘freedom from ignorance’ approach to consent practices, the draft guidance emphasises the ‘importance of doctors finding out what is meaningful for their patients and helping them explore the different options’.General Medical Council, ‘Review of Our Consent Guidance’, https://www.gmcuk.org/about/get-involved/consultations/review-of-our-consent-guidance. Quite how the GMC’s revised guidance will manage to marry these aims with evidence of mounting pressure on healthcare providers remains to be seen.
In this respect, the professional regulator remains ahead of the Courts. Some might say that the latter would do well to take more notice of the GMC’s ongoing debate when it comes to the values driving our consent practices. Yet, it may be that a professional regulator is intrinsically better suited to the re-articulation of the aspirations underlying a matter as context-sensitive as our consent practices, provided compliance to these principles is enforced through rigorous disciplinary processes (a proviso that is becoming less idealistic than 20 years ago). In that context, the task of the legal regulator is to provide a normative structure that supports this context-specific, ongoing professional regulatory work.
Now, there are those who would see any move to emphasise the need for – and complementarity of – ‘bottom-up’ professional regulation as a dangerous step backwards. From such a perspective, the shift towards greater legal regulation is the result of a hard-fought battle that was in large part empowered by Johnson’s successfully denouncing the self-serving nature of the traditional reference to altruistic values and some ‘esoteric’ knowledge to justify professional ‘self-regulation’.T. Johnson, ‘Imperialism and the Professions: Notes on the Development of Professional Occupations in Britain's Colonies and the New States’, The Sociological Review 20 (1972), 281. Johnson rightly exposed the extent to which such justificatory discourse allowed professionals to define the needs of the ‘lay’ population (and the way in which such needs ought to be met), without any accountability mechanisms. From such a perspective, any expansion of the role of the professional regulator risks creating a ‘regulatory vacuum’ – to use Miola’s phraseJ. Miola, ‘Medical Law and Medical Ethics-Complementary or Corrosive?’, Medical Law International 6(3) (2004), 251. – that ultimately empowers ‘the conscience of the individual medical practitioner’ rather than patients.
The above reasoning, which denounces the law’s ‘abdication of responsibility for ethical issues to professional medical ethics’,C. Foster & J. Miola, ‘Who’s in Charge? The Relationship Between Medical Law, Medical Ethics and Medical Morality’, Medical Law Review 23(4) (2015), 505. proceeds from an antagonistic understanding of the relationship between law and professional ethics, whereby the two respectively vie for control in a mutually exclusive, ‘zero sum game’. In contrast, Montgomery points out that there is room for a mutually supportive relationship between law and professional ethics.J. Montgomery, ‘The Virtues of Vices of Professionalism’, in D. Bhugra & A Malik (eds.), Professionalism in Mental Healthcare: Experts, Expertise and Expectations (Cambridge: Cambridge University Press, 2011), 22. In contrast to the negative conception of professional liberty – as ‘freedom from interference’ – that implicitly structures Foster and Miola’s account, Montgomery argues that:
the reason for protecting clinical freedom through the law is not to protect professionals from interference (a negative claim) but to ensure that these professional values can be acted upon (a positive claim).J. Montgomery, ‘The Virtues of Vices of Professionalism’, in D. Bhugra & A Malik (eds.), Professionalism in Mental Healthcare: Experts, Expertise and Expectations (Cambridge: Cambridge University Press, 2011), 22.
There are many ways in which legal regulation can facilitate the above. One type of legal intervention that is widely recognised as beneficial consists in mandating collaborative procedures, as seen for instance in the Mental Health Act 1983 (as amended by MHA 2007). In this respect, Jonathan Montgomery emphasises the constructive way in which the latter Act ‘structures’J. Montgomery, ‘The Virtues of Vices of Professionalism’, in D. Bhugra & A Malik (eds.), Professionalism in Mental Healthcare: Experts, Expertise and Expectations (Cambridge: Cambridge University Press, 2011), 24. the decisions to be taken by psychiatrists, not only by specifying the questions to be asked, but also through process constraints, which notably demands that compulsory admission be initiated by the patient’s ‘nearest relative’ or an approved mental health professional. While the role of the ‘nearest relative’ has been criticisedD. Hewitt, ‘The nearest relative: losing the right to concur?’, The Journal of Adult Protection 12(3) (2010), 35. – a recent report calls for the ‘nearest relative’ role to be replacedRecently, the Independent Review of the Mental Health Act 1983 recommends that nearest relative should be replaced with the ‘nominated person’, nominated by the patient: see The Independent Review of the Mental Health Act, Modernising the Mental Health Act: Increasing Choice, Reducing Compulsion (Final Report, December 2018), 187. by the ‘nominated person’ – as a process constraint the merits of such collaborative procedures ought to be considered within all important healthcare decisions (the required ‘lay’ person may be none other than the patient herself). Such a collaborative approach would differ from the Supreme Court’s approach in Montgomery in that it would impose a positive obligation to go through a certain process that actively involves the patient. Instead of that process being driven by the need to determine what level of information disclosure is adequate (i.e. what would a reasonable / this particular patient want to know?), it would turn things upside down: a healthcare provider would first and foremost have an obligation to collaborate with the patient. The disclosure of adequate information would be one aspect of that process, but it would not be its sole determinant or raison-d’être.
The next section analyses the ‘duty to consult’ that was recognised in Tracey (4.1.), and its potential if it were to be deployed beyond CPR decisions (4.2.).
Arguing in favour of a shift that would see people using health services as ‘citizens’, rather than ‘patients’, Jonathan Montgomery highlights the transformative potential inherent in ‘the duty to consult’ established – under art. 8 of the ECHR – by the Court of Appeal in Tracey v Cambridge UH NHSFT.Tracey v Cambridge UH NHSFT [2014] EWCA Civ 822 [45]-[55]. The latter duty is indeed:
different in kind to the duties considered in Sidaway, Chester and Montgomery because it is aimed at making patients aware that decisions are being made about them and giving them the chance to take responsibility and be actively involved (…) This represents a recasting of what respect for people’s rights require – a move away from the transfer of information towards the opportunity to participate.J. Montgomery, ‘Patient No Longer? What Next in Health Care Law?’, Current Legal Problems 70(10) (2017), 102.
The potential impact of this shift to a ‘duty to consult’ – rather than a duty to inform – is considerable, and need not be confined to healthcare providers. In Tracey, this ‘duty to consult’ was articulated as an answer to the perceived lack of openness (on the part of doctors) about the fact that a decision was being made about the appropriateness of cardio-pulmonary resuscitation. The Court found that Art. 8 ECHR incorporated a right, on the part of a patient and her family, to be consulted and appropriately involved in end-of-life decisions. While Tracey was decided before Montgomery, a later, High Court decision –Winspear (see below) – which extends Tracey to CPR decisions concerning incapacitated patientsFor a related decision see also NHS Trust and others v Y (by his litigation friend, the Official Solicitor) and another [2018] All ER (D) 167, which concerns a minimally responsive patient, after brain damage during cardiac arrest; discussing a duty to consult, although the emphasis is on the patient being heard. is particularly interesting.
In Winspear,Winspear (personally and on behalf of the estate of Carl Winspear; deceased v City Hospitals Sunderland NHS Foundation Trust [2015] EWHC 3250 (QB) (Winspear). the registrar looking after Carl – who was incapacitated – judged there was no urgent need to discuss the placement of the DNACPR notice with Carl’s mother (it was only discussed the next day) partly because ‘the decision was not based on a judgement about his quality of life at the time but rather the futility and ineffectiveness of CPR as an intervention in his case. In these circumstances I did not think that it was necessary or appropriate to call his next of kin at that time.’ In response, the High Court Judge, Blake J., notesJ. Blake also acknowledges the fact that the events that gave rise to the case did take place before Tracey. that the above reasoning:
seems to evidence a misunderstanding as to the purpose of the consultation. It is not a debate about clinical judgment, although one consequence of consultation may be to afford the family to obtain a second opinion if they did not accept it. Rather it is to communicate the decision to the patient or in the event of incapacity without any other appointed representative, the patient's carer, so that important medical decisions about treatment are taken with relevant input into the decision making process, the principle of dignity and best interests is respected in the widest sense and the family can take on board and respond to the news. Ms. Winspear as carer does not have a veto over the treatment plan but she is entitled to be consulted, and it is best practice to consult any other relevant family members.Tracey v Cambridge UH NHSFT [2014] EWCA Civ 822 [52].
The above passage is interesting for our purposes because it explicitly excludes the duty to consult from the sphere of discretionary medical judgment, thus arguably merging Montgomery and Tracey.Note that Winspear does not refer to Montgomery at any point (hence the ‘merging’ argument is meant as a conceptual claim). The latter’s end result is to make sure that patients and their families can take a part in the decision process (at least when it comes to CPR decisions -underlying issues are discussed below), even if they are not meant to have the final word. This involvement does not preclude a clinician’s own decision as to the appropriateness of CPR, which does fall under medical discretion. In contrast, a recent critique of WinspearThe key argument, in this critique, consists in pointing out that, if CPR cannot have any life prolonging effect, it cannot be deemed a potential treatment that falls under Section 5 of the Mental Capacity Act: ‘if it is not a proposed treatment, there is no best interest decision to make, it can never be in the best interests of the patient to be subject to an unlawful (…) invasion of bodily integrity’, R. Anthony-Pillai, ‘CPR Decision Making: Why Winspear Needs to be Challenged’, Journal of Medical Ethics 43(7) (2017), 1-2. mistakenly suggests that such a ‘duty to consult’ may imperil the integrity of CPR decisions:
when clinicians are as certain as they can be that CPR will not sustain life, then the default nature of CPR provision means that the priority cannot be seeking the views of relatives on whether CPR can be withheld (as Blake J asserts), but instead must be the efficient dissemination of this clinical assessment so that the patient is not subject to an unlawful assault.The key argument, in this critique, consists in pointing out that, if CPR cannot have any life prolonging effect, it cannot be deemed a potential treatment that falls under Section 5 of the Mental Capacity Act: ‘if it is not a proposed treatment, there is no best interest decision to make, it can never be in the best interests of the patient to be subject to an unlawful (…) invasion of bodily integrity R. Anthony-Pillai, ‘CPR Decision Making: Why Winspear Needs to be Challenged’, Journal of Medical Ethics 43(7) (2017), 1-2.
The above quote correctly highlights the fact that there are several kinds of vulnerability at stake: the patient’s own frailty, and his incapacity to articulate the extent to which he may be prepared to endure physical pain in a bid to prolong life, rightly leads the author of the above quote to be concerned about the extent to which the carer’s wishes should be taken into account, if CPR is clinically deemed unlikely to prolong life. Yet Winspear is not a decision about whether or not the carer’s wishes should be allowed to override a clinical decision. What Winspear asserts, instead, is a carer’s right to be consulted. Its rationale stems from the different and less visible kind of vulnerability discussed in Section II: it is a vulnerability in relation to which form, and not just content, matters.
Without a right to be consulted before a decision as sensitive as a DNACPR, a carer would rightly feel alienated, and this feeling of alienation would re-inforce the feeling that she – and those she cares for – are only ever ‘worked upon’, determined by events the roots and implications of which she cannot attempt to make hers. Of course, for this right to be consulted to lead to genuine patient empowerment, a number of conditions have to be obtained. Zoe Fritz and others review the problems with current DNACPR practices to outline the ‘ReSPECT’ process as an alternative. The latter is designed to ‘shift the focus form a specific decision about CPR to making personalised plans on broader emergency care and treatment’.Z. Fritz, A.M. Slowther & G.D. Perkins, ‘Resuscitation Policy Should Focus on the Patient, not the Decision’, British Medical Journal 356:j813 (2017). Just in the same way as a consent process that is solely ‘information driven’ (i.e. the focus is on assessing what a ‘reasonable patient / that particular patient would want to know’) is unlikely to empower patients, a consultation which narrowly focuses on DNACPR wishesA 2019 systematic review highlights the need for large randomized clinical trials to investigate the best approaches to the facilitation of DNR decisions: C. Becker et al., ‘Association of Communication Interventions to Discuss Code Status with Patient Decisions for Do-Not-Resuscitate Orders: A Systematic Review and Meta-analysis’, JAMA Network Open 2(6) (2019). – with no contextualisation within overall goals of care – can be traumatic for both patients and healthcare providers. Such a narrow focus has also been shown to be potentially misleading and harmful.M.C. Beach & R.S. Morrison, ‘The Effect of Do-Not-Resuscitate Orders on Physician Decision-Making’, Journal of the American Geriatrics Society 50 (2002), 2057; E.A. Henneman et al., ‘Effect of Do-Not-Resuscitate Orders on the Nursing Care of Critically Ill Patients’, American Journal of Critical Care 3 (1994), 467.
From a theoretical perspective, the above illustrates the limits inherent in legal regulation, and the extent to which the latter can backfire if it is not working in concert with a community-based, co-originated form of professional regulation. The process that led to the Resuscitation Council (UK) establishing the ‘Recommended Summary Plan for Emergency Care and Treatment’ (ReSPECT) started in 2014. The bottom-up, iterative approachThis process included participation from various stakeholders – including patient representatives, a public consultation etc., and is ongoing. For more details see G.D. Perkins & Z. Fritz, ‘Time to Change from Do-Not-Resuscitate Orders to Emergency Care Treatment Plans’, JAMA Network Open 2(6) (2019) as well as Z. Fritz, A.M. Slowther & G.D. Perkins, ‘Resuscitation Policy Should Focus on the Patient, not the Decision’, British Medical Journal 356:j813 (2017), 2-3. that drives the ongoing, progressive deployment of ‘ReSPECT’In order to go through the process of adoption, a ‘responsibilities and requirements’ document needs to be signed: this document goes through the kinds of things that one’s healthcare environment needs to be ready for in order to take on ‘ReSPECT’ (these not only include governance and continued feedback requirements, but also education requirements -from hospital staff to care homes, ambulance services etc.). Once there is enough knowledge in the healthcare community, a public-facing campaign to educate the public about the ‘ReSPECT’ process is meant to follow (https://www.respectprocess.org.uk/). across the UK will be the object of an evaluation (based on early adoption sites) meant to be available next year. The latter process is but one example of the kind of initiative that can enable a legal intervention (Tracey and the duty to consult) to be more likely to produce the desired outcome (i.e. empowerment of patients).
Now, what are the chances – if any – that a wider duty to consult may eventually be constructed by the Courts, beyond CPR decisions? What if, through its calling into question the long-established Sidaway doctrine, Montgomery actually ended up increasing the chances of such development? Montgomery has widely been hailed as a watershed decision because it re-defines the scope of the Bolam Test, whose contours were famously drawn in Sidaway.Sidaway v. Bethlem RHG [1985] 1 All ER 643. What Sidaway is less famous for is a dictum by Lord Scarman, which unequivocally dismisses the possibility of obtaining equitable relief on the basis of a breach of fiduciary duty by a doctor:
Counsel for the appellant referred to Nocton v. Lord Ashburton [1914] A.C. 932, [1914-15] All E.R. Rep 45 in an attempt to persuade your Lordships that the relationship between a doctor and patient is of a fiduciary character entitling a patient to equitable relief in the event of a breach of fiduciary duty by the doctor. The attempt fails: there is no comparison to be made between the relationship of doctor and patient with that of solicitor and client, trustee and cestui qui trust or other relationships treated in equity as of a fiduciary character.Sidaway v. Bethlem RHG [1985] 1 All ER 643, [884].
Has the time come – thanks to Montgomery – to reconsider the extent to which fiduciary duties may in fact contribute to a legal framework that is better able to address the specific vulnerability that affects healthcare relationships (as described in Section 1)? Lord Scarman’s dictum is indeed deemed to be the reason underlying the comparatively low level of doctrinal interest for fiduciary duties and their potential as an independent ground for action in professional malpractice claims in the UK.This situation contrasts with that of Canada (the only country to explicitly characterise the patient-doctor relationship as fiduciary) and the US, where fiduciary duties are recognised as an independent ground for action in respect to particular obligations (such as confidentiality) in some States, and are the object of lively doctrinal discussions. Yet taken together, the right to respect for private life enshrined in Art. 8 ECHR (as invoked in Tracey), the right to due process (art. 6 ECHRSee Glass v UK Apps No 61827/00 (Judgment 9.3.2004) on parental rights to a court hearing in relation to non-emergency life and death decisions.) and fiduciary duties could pave the way for a wider-ranging duty to consult. The potential and challenges inherent in a move towards a fiduciary approach to professional responsibility are addressed in detail in a separate publication.S. Delacroix, ‘A vulnerability-based account of professional responsibility’,
https://papers.ssrn.com/sol3/papers.cfm?abstract_id=2840864. What matters, for our purposes, is that a move to such a fiduciary framework could help address the pitfalls of a regulatory approach that is so concerned with limiting the scope of individual clinical discretion (through formal information disclosure requirements) that it ends up disempowering the patient too.
Until recently, if the Courts did consider the vulnerabilities at stake in the lay-healthcare provider relationship, it was mostly with a view to remedying epistemic imbalances (and preserving bodily and patrimony integrity). The resulting focus on information disclosure has obscured a less tangible, but no less important type of vulnerability. Section 2 outlined the eroded sense of social personhood that stems from a situation where health concerns become all-encompassing, or at least prevent one from being able to articulate one’s own aspirations as to the kind of person one wishes to become. As a way of addressing this type of vulnerability, the blanket disclosure of risks and side effects is just as inept as the ‘passive ignorance demanding benevolent paternalism’ model that lawyers have long mis-attributed to Parsons.
Regrettably, the continuing influence of this ‘Parsonian’ understanding can be seen at play in a decision – Montgomery – that has otherwise been hailed as challenging the paternalism encapsulated in the Bolam Test. Instead of seizing the opportunity to delineate ways of addressing a wider kind of vulnerability, Montgomery focuses on its epistemic aspect only. For the Court, the fact that ‘few patients do not feel intimidated’ warrants an obligation to disclose the risks that would be deemed significant both by a ‘reasonable’ patient and by the ‘particular’ patient. Section 3 argued that this position asks of each healthcare provider close-to-impossible mental feats. While the shared-decision making demands that each consultation be unimpeded by a-priori categorisations that would stand in the way of a sensitive acknowledgment of each patient’s specificities, the objective, ‘reasonable patient’ constraint seemingly calls for the opposite.
In contrast to the blanket disclosures that risk being relied upon in defensive (and reductive) attempts to comply with Montgomery, Section 4 highlighted the very different type of obligation entailed by Tracey’s ‘duty to consult’. As a plausible move towards acknowledging the particular type of vulnerability inherent in the lay-healthcare professional relationship, the potential impact of such a duty to consult is considerable, and need not be confined to CPR decisions. Section 4.2. considered the extent to which opening the doors to a fiduciary understanding of professional responsibility may contribute to widening the scope of a duty to consult. Section 4.1. highlighted the extent to which unpacking the implications of such a duty to consult demands some bottom-up, ‘co-originated’ regulatory framework. As an example of the latter, the process that is progressively leading to the deployment of ‘Recommended Summary Plan for Emergency Care and Treatment’ (ReSPECT) across the UK deserves attention.
At a time when healthcare services are under increasing pressure to deliver ‘more for less’, it has never been more important to re-delineate the concrete obligations that stem from the particular vulnerability outlined in Section 1. Not only are these obligations unmet by any defensive, blanket disclosure of risks and side-effects. These obligations can only be meaningfully unpacked through genuinely co-produced regulatory frameworks of the kind outlined in Section 4. One must hope that the significance of these bottom-up regulatory initiatives come to be better appreciated, as they will be key to ensuring that emerging data-intensive technologies only transform the nature of the lay-healthcare professional relationship for the better, rather than for the worse.