On these pages we honour the intellectual contributions of our esteemed colleague and dear friend, Ken Mason, in the broad field of medical jurisprudence. We invite short academic posts up to 1,000 words that are inspired by Ken Mason’s writing in the field. Anyone who knew Ken or has been influenced by his work is welcome to submit a proposal to Graeme.Laurie@ed.ac.uk.
Ken Mason was an Honorary Fellow in the School of Law at the University of Edinburgh for 32 years, from 1985 until his death on 26 January 2017. Even before joining the School of Law officially, Ken was publishing significant contributions in medical law and ethics during his time as Regius Professor of Forensic Medicine, also in Edinburgh, from 1973-1985. During that early period he established honours and masters courses in medical jurisprudence with his colleague Alexander (Sandy) McCall Smith, and this work formed the basis of their textbook, Law and Medical Ethics, that was first published in 1983. It was the first such textbook of its kind in the United Kingdom and helped to establish Ken Mason has an unassailable founding father of the discipline in the UK. The book has been used by multiple generations of undergraduate and postgraduate students since its first appearance, and many of Ken’s former students offer contributions on these pages that speak of the ways in which Ken and his intellectual ideas have inspired them.
Ken Mason was a prodigious scholar. He was fascinated by all aspects of medical law and ethics, which in Edinburgh we call Medical Jurisprudence. This both reflects the historical links between medicine and law that have existed in our institution since the 18th century, and also captures the idea that our field transcends disciplines and requires input across different specialities to make genuinely influential contributions. While Ken’s command of the law was often superior to that of many of his legal colleagues, his interests were particularly engaged by reproduction & the law, as well as by end-of-life issues. True to form, however, Ken was always open to changing his mind. It was not unusual from one academic year to the next for colleagues to be wrong-footed by a 180-degree volte face by Mason on any given topic! On more than one occasion, he declared himself a feminist - as much to his own surprise as to anyone else’s.
Still, Ken often professed to having a ‘bee in his bonnet’ about stubborn issues and questions in medical jurisprudence. In particular, we recall the following:
- he strongly supported the view that a mature minor should not be allowed to refuse treatment, even is she has capacity to consent (Gillick)
- he took issue that that law affords the fetus ‘no rights’;
- he was vexed by the ‘individualistic’ turn in medical law, and was drawn to notions such as relational autonomy;
- he often called himself a communitarian, and he was intrigued by areas of law and ethics that reflected this idea;
- he was engaged by assisted dying legislation, especially on what would count as adequate safeguards and whether medical practitioners should be involved;
- he insisted that death was a process, and not a moment, and he was frustrated by law’s failure to reflect this: this has implications for his view on transplantation;
- he vehemently disagreed with the rule that you cannot recover for the birth of a healthy child even when there is negligence;
- he would have been fascinated by the current revisitation of the 14-day rule in embryo preservation and use.
You will find contributions here that reflect these and many other of Ken Mason’s ideas. As stated above, we welcome contributions from anyone who knew him or his work. As a reminder, here are some links to Ken’s contributions to medical jurisprudence over the years as well as to other examples of the work of people who have honoured him:
-Ken Mason's publication list on Edinburgh Research Explorer
-Ken Mason’s monograph, The Troubled Pregnancy (CUP, 2007)
-Ken Mason’s festschrift, First Do No Harm (SAM McLean (ed), Ashgate, 2006)
If you would like to contribute, please contact Graeme.Laurie@ed.ac.uk
If you would like to become a member of the Mason Institute, please contact Annie.McGeechan@ed.ac.uk
If you would like to leave a message of condolence, please visit the official site here: www.inmemoryofkenmason.law.ed.ac.uk
Please scroll down this page to read our latest blog posts.
Friday, 25 August 2017
When I started working at the JK Mason Institute, back in 2014, it was immediately clear to me that colleagues were dedicated to keeping the legacy of Professor JK Mason alive, both in the academic and social fabrics of the institute. Even those of us who had never had the good fortune of meeting him in person recognised that Professor Mason’s vision was alive and thriving, both in the research and teaching community at the School of Law. Early in my appointment I became involved in teaching on the Medical Jurisprudence courses offered by the Mason Institute. This was an exciting beginning for me, having had very little training in law. At the same time it was considerably intimidating, given that colleagues who co-taught on the course had either trained, or had worked for many years with the illustrious pioneer of medical jurisprudence. My fears of course were entirely unfounded, given that in keeping with Professor Mason’s understanding of the crucial and difficult relationship between law and ethics, I was very much encouraged and supported in developing the ethical aspects of the course. Medical Jurisprudence, as its title suggests, is a course that attempts to capture the symbiotic nature of teaching medical law and bioethics together, blending theory and practice across the range of issues arising from modern medicine.
Earlier this summer, as I thought about the teaching year ahead and considered the lessons learned, I closely followed the developments surrounding the heart-breaking case of Charlie Gard. I will not offer yet another professional ethicist’s opinion on the case here, not only because commentators have done so far more eloquently throughout the case, but also because the ethicist and the parent in me violently clash on aspects of Charlie’s story and are yet to come to an agreement. Although cases like Charlie’s are not as rare as one might think, the manner in which the case became an issue of public opinion and campaign (parts of which were frankly deplorable) was striking. So was the fact that it was at times strangely co-opted by politics and the media, who often seemed to wilfully ignore facts—and, in keeping with the times, experts. Among the cacophony of popular opinions and twitter storm – which could not possibly have helped Charlie’s parents in these testing times—we might easily forget that behind such cases are not only devastated parents, but dedicated, conscientious professionals, and courts that are asked to make very difficult decisions. Self-evidently, a variety of interests are at play. The case highlighted the complexity behind terms much used in medical law and medical ethics: best interests and harm; the crucial role of the courts in medical decision-making and the rights of parents; the very difficult area of experimental interventions, medical tourism (and the associated questions related to jurisdiction), as well as hidden (financial and professional) interests behind such interventions. The case also further problematized the role of trust, evidence and expert opinion in matters that nevertheless affect human lives and deeply-held values. Importantly also, an aspect that was often less discussed (probably rightly so) while the case was ongoing, is the difficult relationship between autonomy, interest and justice in access to care and the distribution of scarce medical resources.
Unfortunately, Professor Mason passed away earlier this year and I am not sure of how he would have interpreted what seems to be a change in the profile of medical ethics, accelerated by social media, towards a reality where public, medical and legal sensitivities clash into a public forum. I understand from my colleagues that Professor Mason was not only a deeply empathetic man, but also a self-confessed communitarian. As such, I wager he would have strived to reconcile both the public and private interests in play to support a just outcome; he would have been very aware of the long line of precedents laid down in such cases, on which he himself wrote 25 years ago. He would not have wished Charlie’s case to be seen as an isolated incident.
Much as we might like to let Charlie’s case rest in peace, students taking medical jurisprudence this year may well have questions and opinions about it, and we should be prepared. Beyond pointing them to a wealth of resources on the case, there are certainly a few things that I would like to clarify to students: that while differing values must be acknowledged in a pluralistic society, ethics is not a matter of opinion; that there are such things as good and bad arguments, better or worse reasons; that rigour in conceptual analysis is crucial to both ethical and legal debates; that experimental interventions perfectly illustrate the need to understand both research and medical ethics, as well their core values; that while we might agree on the procedural aspects of the law, we might still disagree about its ethical underpinnings, and while legal decisions may appear to be purely procedural and neutral, they are almost inevitably and invariably based on substantive ethical positions (i.e. that while we might speak of thresholds and chances, we still have to decide what an acceptable threshold or chance might be); that the clash between personal moral intuition and professional moral deliberation is itself a site of learning for students of ethics and law. Ultimately, our aim as teachers is to help students become thoughtful citizens and professionals. The medical jurisprudence course goes to the heart of our core values and emotions, and is therefore a delicate but fulfilling platform from which to do just that.
Tuesday, 25 April 2017
I arrived in Edinburgh in 1993, with the intention of completing a one-year taught LLM degree. The fact that I am still here is in no small part due to the intellectual seeds that were sown that year, by Ken Mason and Sandy McCall Smith, who led some very lively and engaging discussions in medical jurisprudence. They were to go on to jointly supervise my PhD thesis in informed consent – an area of the discipline that was at the time in danger of being academically overworked, but which has enjoyed something of a revival with the decision in Montgomery v Lanarkshire Health Board from the Supreme Court in 2015.
Towards the end of that first year, I saw Liz Lochhead’s play Mary Queen Of Scots Got Her Head Chopped Off, at the Lyceum Theatre. Written in Scots, the play was accessible because of the many Scots words that are still in common usage. ‘Ken’, I had already mused, is transitive of ‘to know’ – and to my great benefit had taken on the personified causative form of ‘to make known’.
That is what Ken constantly undertook: as well as a prodigious publications list, he was always committed to teaching. His method was Socratic, posing consistently challenging questions so that arguments and points of view would emerge through discussion and debate.
The baton that Ken passed to me came in the form of an update to his chapter in Principles of Medical Law, for the 4th edition. On learning from his invitation to ‘take over’, of his anxiety to ‘keep it in the family’, I experienced that odd combination of honour and gratification – and absolute anxiety that the shoes I was set to fill were several sizes too spacious.
As well as updating the case law, Ken listed what he called ‘snags’, but which I preferred to understand as comprising the baton being passed. He insisted that while death may be a process rather than an event, it is an ‘absolute’ state, and that a chapter that carries the title ‘Death’ should not contain a substantive discussion of topics like the permanent vegetative state, the minimally conscious state, nor indeed organ transplantation. And so, my first task in continuing Ken’s legacy turned out to be a kind of editorial diplomacy. Despite the undeniably pleasing ‘well done!’ from Ken, it was the willingness of others – in particular Professor Jonathan Herring – that secured the location of many of those topics in the chapter ultimately called ‘Ending Life’.
It is to Ken’s credit that there are many readers that are now able to see and understand the links among and between these different topics, as well as their most fitting location.
My next task was less straightforward.
Among the few issues that Ken wanted to discuss in detail was the ‘agonal period’, between somatic and cellular death, which has not benefitted from a wealth of legal attention, but which has significant implications for transplant medicine.
We were agreed on two critical issues: that despite editorial exclusion in Principles, transplantation and death are intertwined subjects; and that to distinguish between types of death involves a misconception that runs counter to our understanding of death as an absolute state. That misconception would hold that the type of death accepted as definitive (cardio-respiratory and brain-death), is determined by the utility of that diagnosis. This would have the dangerous consequence of placing the transplantation needs of others ahead of the diagnosis of the primary patient.
There may not be different types of death, but before that absolute anoxic state is reached, and during the process that has death as its culmination, a person may be in a number of different states (rather than stages which suggest a defined sequence of events). This, however, is a medical understanding. Legally and socially, an identifiable time is required that marks the occurrence of death.
The cellular tissues of the brain are distinguishable from all other tissues by their capacity for cognitive function and their incapacity to regenerate. If our definition of ‘life’ is dependent on cognition, then ‘death’ must be dependent on its absence. This final period in a person’s life marks a transition between a status deserving of respect for the person, to one of respect for the corpse. This underlines the call for a legally identifiable watershed moment. This is to be contrasted with the medical reality that death, or at least natural death, is a process not an event.
The often brief liminal period between brain and cellular death can be extended by artificial cardio-respiratory systems, giving rise to the (brain-stem dead) ‘beating heart organ donor’, and which raises the utilitarian controversies already mentioned. The usefulness to transplantation medicine of organs that have remained well oxygenated, is undeniable. It is also only possible with reliance on brain-stem death as the criterion for ‘death’ to have legal effect.
The conflation of organ procurement provisions and diagnostic criteria is ethically troublesome, and open to confusion. Can the use of neurological criteria truly be dissociated from the pragmatics of organ procurement, when individuals diagnosed as ‘brain-dead’ are the source of the organs without which transplants cannot take place, and when brain death and brain-stem death are often used interchangeably? If we accept the pervasiveness of the neurological criteria for death, and most crucially its reference to irreversibility, will that involve the moral acceptance of the utilitarian perspective of deriving some good from a life that cannot continue?
The very use of the words ‘cannot continue’, must admit the view that this life has not yet ended, albeit that life is being artificially sustained, the biologically inevitable process of death held in abeyance at its threshold. During that period a person has not, in the views of many including Ken Mason, achieved the end of the process, and any definition or definitive criterion that casts its net widely enough to include those people, does so to the valid criticism of many.
There are those who hold that the term ‘death’ should only be applied to those whose heart has ceased beating, and that those diagnosed as brain-dead have not died in the accepted cardio-vascular sense, but are in a ‘near death’ state and should be legally available as organ donors. This, according to Miller et al, requires the acceptance of the ‘moral fiction’ that, ‘[d]onating vital organs is believed to be ethical only insofar as it conforms to [the Dead Donor Rule].’ That, in turn, raises the question of whether the donor is in fact dead, when the artificially ventilated brain-dead patient is still able to perform a range of integrated biological functions such as temperature control and the metabolising of food. If the patient is dead only in the sense of the irreversibility of their artificially-maintained vital functioning, and examples exist of patients resuscitated following asystole, the argument may be advanced that the condition is ‘irreversible as a matter of intention rather than as an unalterable fact.’ The legal fiction, then, justifies the patient’s death as resulting from their underlying medical condition. It also exposes the need to distinguish brain-death from brain-stem death, as thermoregulation is impaired in the latter state.
And yet it is impractical in the clinical setting to fulfill the neurological diagnostic criteria to establish the absence of higher brain function following cardio-respiratory collapse, which may go some way to explain why the available guidance – at last in the United Kingdom – is not based on brain function, but on the possibility of auto-resuscitation. The lack of standardisation and guidance is an issue that vexed Ken, not least due to the variation, internationally, in the required period between anoxia and cessation of brain function (ranging from two to fifteen minutes) that will justify non-heart-beating organ donation. The protocols developed are applicable to ‘planned decisions to withdraw life support’, and involve the legal fiction already considered.
It has been argued that brain death has, since its introduction in 1965, had the ‘principal’ and statistically successful aim of facilitating organ transplantation. Its acceptance also paved the way for the Uniform Determination of Death Act 1980 in the United States, which uses irreversible cessation of the whole brain in the alternative to irreversible cessation of circulatory and respiratory functions to determine that death has occurred. Avoidance of the confusion of diagnosis of death and organ procurement will require an understanding that artificially maintaining cardio-respiratory function merely slows the pace of assessment and prognosis, such that a diagnosis of brain-stem death merely confirms what is already known from clinical observation.
As well as those questions already raised in this blog post, further issues are open for exploration through future research:
What do we mean by ‘law’s failure to reflect that death is a process’ – a failure that frustrated Ken?
Would legal recognition mean a return to a triadic definition of death?
Would a consequence of that approach be to reduce further the number of viable organs available for transplantation, just as the use of brain-stem criteria is able to increase that number?
End-of-life issues other than the procurement of organs for transplantation also arise. Some of these issues may, or even should, involve broadening our notion of the liminal period between life and death, to include those with a terminal prognosis, yet not requiring artificial cardio-respiratory support. During that period – be it leading to a permanent vegetative state or a minimally conscious state, or during a terminal disease stage in which legal capacity may or may not be compromised – there is a call for a greater understanding of that person’s preferences as to their care. This raises questions of how those preferences are known, whether the patient and their family have been consulted, and whether current guidelines are in line with the case law.
I certainly look forward to running with the baton that has been passed by Ken Mason.
 Montgomery v Lanarkshire Health Board  UKSC 11 https://www.supremecourt.uk/decided-cases/docs/UKSC_2013_0136_Judgment.pdf
 Judith Laing and Jean McHale (Eds) Principles of Medical Law (4ed). Oxford University Press. 2017. https://global.oup.com/academic/product/principles-of-medical-law-9780198732518
 On the relationship between the definition of death and organ transplantation, see S D Shemie, ‘Clarifying the paradigm for the ethics of donation and transplantation: was ‘dead’ really so clear before organ donation?’ (2007) 2 Philos Ethics Hummanit Med 18.
 Academy of the Medical Royal Colleges. A Code of Practice for the Diagnosis and Confirmation of Death. London, 2010. http://www.aomrc.org.uk/publications/reports-guidance/ukdec-reports-and-guidance/code-practice-diagnosis-confirmation-death/
 See Human Tissue Act 2004, s.43 on maintaining and preserving bodies prior to transplantation
 Margaret M Lock, Twice Dead: Organ Transplants and the Reinvention of Death. University of California Press. 2001.
 R D Truog, and W M Robinson, ‘Role of Brain Death and the Dead- donor Rule in the Ethics of Organ Transplantation’ (2003) 31 Crit Care Med 2391.
 F G Miller, R D Truog, and D W Brock, ‘The Dead Donor Rule: Can It Withstand Critical Scrutiny?’ (2010) 35 J Med Philos 299– 312
 Code of Practice for the Diagnosis and Confirmation of Death, Academy of Medical Royal Colleges (2008), and An ethical framework for controlled donation after circulatory death. Academy of Medical Royal Colleges (2011).
 S K Shah, R D Truog, and F G Millar, ‘Death and legal fictions’, (2011) 37 J Med Ethics 719-22 and S K Shah and F G Millar, ‘Can we handle the truth? Legal fictions in the determination of brain death’ (2010) 36 Amer J Law Med 540.
 I H Kerridge et al, Death, dying and donation: organ transplantation and the diagnosis of death, (2002) 28 J Med Ethics 94
 United States Uniform Acts, Uniform Determination of Death Act 1980: www.lchc.ucsd.edu/cogn_150/Readings/death_act.pdf
 Vegetative and Minimally Conscious States, Parliamentary Office of Science and Technology Note, March 26, 2015. http://researchbriefings.parliament.uk/ResearchBriefing/Summary/POST-PN-489
 Our Commitment to you for end of life care. The Government Response to the Review of Choice in End of Life Care. Department of Health. July 2016.
 Tracey v Cambridge University Hospital NHS Foundation Trust  EWCA Civ 822 https://www.judiciary.gov.uk/wp-content/uploads/2014/06/tracey-approved.pdf
Tuesday, 18 April 2017
This post is inspired by Ken Mason's Forensic Medicine for Lawyers that rekindled the author’s interest in forensic science and medicine: an influence which continues to direct her research interests.
In his 2014 Kalisher lecture, the Lord Chief Justice expressed concerns regarding the potential of new, or complex, scientific developments to tarnish the status of forensic DNA profiling. Lord Thomas identified the 'challenge for all…advocates and judges – to manage the presentation and testing of forensic evidence in such a way as to avoid fatally undermining confidence.’ The judiciary’s concern to maintain public confidence in this forensic keystone is well founded, given the unparalleled discriminatory potential of DNA profiling techniques, and their unique ability to link the bio-identity of suspect populations to an ineradicable bodily substrate. Indeed, a glance at recent news stories would suggest that the LCJ’s challenge has been met, and that the reputation of DNA profiling – as the ‘gold standard’ of forensic identification tools - remains secure.
Nonetheless, the persistent presence of these overarching concerns may go some way to explain the decision in R v Tsekiri  EWCA Crim 40 . In this case the Court of Appeal of England and Wales addressed the problematic issue of DNA ‘transfer and persistence’. The facts are as follows: In June 2016, a Ms. Carr unlocked her car. At this point, an unidentified man attempted to enter the vehicle. A brief struggle ensued, and the man escaped, with Ms. Carr’s gold necklace. Swabs were taken from the exterior door handle of the vehicle and these revealed a mixed DNA profile. The profile belonging to the major contributor was consistent with that taken from the appellant (with a match probability of 1:1 billion). There was at least one other minor contributor. The reporting scientist could reach no determination as to when the major components of the mixed DNA profile had been deposited, nor their source. The deposit could have been due to that person touching the door handle, or due to indirect secondary transfer through an intermediary (though the reporting scientist considered this unlikely, given that the DNA in question was the major contributor to the profile). The appellant submitted that there was no case to answer given the dearth of evidence.
Held (Lord Thomas, LCJ): Where a defendant's DNA profile - recovered at the scene - is the only evidence, that evidence is sufficient to raise a case to answer, provided the match probability is in the order of 1:1 billion. Sufficiency will depend on the facts of the case. The court provided a non-exhaustive list of relevant factors to be taken into account:
-Can the presence of the DNA evidence be otherwise accounted for?
-Was the article apparently associated with the offence itself?
-How readily movable was the article in question?
-Is there evidence of some geographical association between the offence and the offender?
-In the case of a mixed profile, is the DNA profile which matches the defendant, the major contributor?
-Is it more or less likely that the DNA profile attributable to the defendant was deposited by primary, or secondary, transfer?
The court stressed the crucial point, ‘that there is no evidential or legal principle which prevents a case solely dependent on the presence of the defendant's DNA profile on an article left at the scene of a crime being considered by a jury.’
Whilst the court’s decision may help to maintain confidence in the probative value of forensic DNA profiling techniques, it may be argued that the judiciary have purchased security at the price of accuracy. The case highlights a growing problem for DNA profiling experts, whose technologies are now so sensitive that they routinely report ‘mixed’ samples, including deposits made indirectly through intermediate contacts, and low-template DNA shed naturally by individuals and spread through contact and dispersal. In many cases, scientists can de-convolute mixed samples using their expertise, often with the aid of complex computer algorithms. The de-convoluted results may reveal a major contributor, and one - or more - minor contributors, all of whose profiles may be complete, or partial.
However, the evaluative problems are not limited to attribution. Whilst individual profiles may be ‘matched’ to individuals on the DNA database - with probabilities in the order of 1:1 billion - the resulting evidence may be effectively neutralised by the issue of the transfer and persistence of DNA deposits across multiple surfaces. The interposition of such issues shifts the focus of analysis, such that the courts should no longer address themselves to the question of ‘to whom does this DNA sample belong?’ The salient question becomes: ‘how did this DNA sample come to get here?’
Given that different individuals shed epithelial ‘touch’ DNA at different rates; that different surfaces retain DNA at different rates; and that DNA may be deposited by secondary, or even tertiary, intermediaries (not to mention the presence of environmental factors); the task of answering activity propositions with any degree of certainty may prove difficult, if not impossible.
The problem, then, is encapsulated in this excerpt from a research interview with a lead DNA profiling scientist. She considers a hypothetical situation based on the analysis of a profile recovered from a pair of gloves left at the scene of a robbery. The suspect claims that the gloves are his, but that they were borrowed by another individual:
The above concerns are supported by laboratory studies, which demonstrate that DNA, deposited on an object as a result of secondary transfer, is frequently identified as either the only contributor, or the major contributor, to a mixed profile, despite the contributing individual never coming into direct contact with the object. 
Such studies illustrate the risks of assuming that DNA, recovered from an object, results from a direct contact. They also cast doubt on the Court of Appeal’s approach to such issues, given that the latter are effectively attempting to weight transfer and persistence. Indeed, further questions are raised as to whether it was possible for the court in Tsekiri to arrive at strong assertions, such that ‘there can be no doubt that the offender did touch the article in question.’ Further, studies would appear to confound the bare proposition that ‘secondary transfer was an unlikely explanation for the presence of the appellant's DNA on the door handle.’ Nor does the connection between the suspect and a particular geographical location necessarily aid determination, since such a connection may be equally supportive of secondary transfer scenarios.
The failure of the courts to take this opportunity to address the pressing problem of DNA transfer and persistence is perhaps understandable, given that the evidence in the above case was not subject to rigorous cross-examination. However, both practitioners and the courts should be aware of the issues involved, alive to the importance of context, and wary of attempts to collapse the question of ‘how’ into the less scientifically problematic question of ‘who?’
Whilst there may be a number of economic, policy, and procedural reasons for such an approach - centering on the perceived necessity to maintain the unblemished status of forensic DNA - attempts to evade the pressing question of transfer and persistence may provide only temporary security for accused persons and society alike.
 R v Tsekiri  EWCA Crim 40 (17 February 2017) ;
 The 2014 Criminal Bar Association Kalisher Lecture: Expert Evidence: The future of forensic science in criminal trials. The Right Hon. The Lord Thomas of Cwmgiedd. 14th October 2014
 R v Tsekiri  EWCA Crim 40 at 21
 Taroni F., Biedermann A., Vuille J., Morling N. (2013). Whose DNA is this? How relevant a question? (a note for forensic scientists). Forensic Sci. Int. Genet. 7, 467–470
 Despite rigorous attempts to provide coherent data in respect of DNA transfer and persistence, research is sporadic, and results lack meaningful generalisability. See, for example: C. Davies, et al., Assessing primary, secondary and tertiary DNA transfer using the Promega ESI-17 Fast PCR chemistry, Forensic Sci. Int. Gene. Suppl. (2015)
 Interview with DNA lead scientist (Tier 2 forensic science provider). Oxford, 2015.
 Cale CM, Bush GL, Earll ME & Latham KE (2016) Could Secondary DNA Transfer Falsely Place Someone at the Scene of a Crime? Journal of Forensic Science, January 2016;61(1): pp.196-203.
Tuesday, 4 April 2017
Unfortunately, I never had the honour, privilege and pleasure of meeting Professor Ken Mason, having arrived at the University of Edinburgh shortly after he stepped away from the Law School. Yet, through affectionate and humorous stories shared with me from Graeme Laurie and colleagues, I quite quickly came to understand the tremendous and memorable impact Ken had on people, on institutions and on disciplines. Upon Ken’s passing, Graeme inspired me to commemorate this kind, sage, admired Professor by writing a short piece on a topic about which he was vocal (and from what I hear, there were many such topics!). One topic was the ‘individualistic’ turn in medical law, which apparently rather vexed him. This is a topic which interests me – and sometimes vexes me as well – particularly in the context of autonomy and privacy, seen perhaps most starkly in human rights claims grounded in Article 8 of the European Convention on Human Rights. On this, Graeme, I and other colleagues in the Liminal Spaces Project explored in an article analysing an intriguing European Court of Human Rights case on the nature and scope of the right for relatives to consent to or to oppose the removal of a deceased person’s tissues.
Continuing the topical thread on the ‘individualistic’ turn, of which Ken was a major sceptic, here, I want to explore Scotland’s inchoate turn towards something called ‘realistic medicine’. Given the brief space acceptable for a blog piece, I merely want to pose some critical questions for thought. After a brief overview of what ‘realistic medicine’ entails, I query whether it represents yet a further example of an individualistic approach in medicine, and also query what might be the impact on collective responsibility and provision of care by the state. Though I sincerely lament having never met Ken, one can only hope that this short piece serves in some way as a small but genuinely heartfelt token of gratitude and commemoration for this giant in medicine, law and ethics.
The dawn of ‘realistic medicine’
In January 2016, Scotland’s new Chief Medical Officer (CMO), Catherine Calderwood, introduced the concept of ‘realistic medicine’ in her first annual report. The impetus behind this concept is somewhat vague, but it seems to stem from perceived ‘times of challenge’ in the NHS, namely the ‘increase in demand for services in an age of austerity’ that ‘requires us to achieve more through better use of resources’. To this end, the CMO cited a 2015 Audit Scotland report that called for a ‘fundamental change’ in the way NHSScotland delivers services to cope with increasing demands for services and to increase the pace of change. Audit Scotland’s report was blunt in its assessment:
Significant pressures on the NHS are affecting its ability to make progress with long-term plans to change how services are delivered. Tightening budgets combined with rising costs, higher demand for services, increasingly demanding targets and standards, and growing staff vacancies mean the NHS will not be able to continue to provide services in the way it currently does. Together, these pressures signal that fundamental changes and new ways to deliver healthcare in Scotland are required now.
If the impetus is financial austerity and increased demand in services, then what exactly constitutes ‘realistic medicine’? – and is it the right remedy for the identified challenge? In her 2016 report, the CMO identifies six aims behind ‘realistic medicine’:
1) build a personalised approach to care;
2) pivot to shared decision-making;
3) reduce unnecessary variation in practice and outcomes;
4) reduce harm and waste;
5) manage risk better; and
6) encourage health professions to become improvers and innovators.
The aims are not explicitly underpinned by any delineation of principles (though reference is made to ‘principles of realistic medicine’ several times) or reference to statutes, so making sense of what realism in healthcare really means presents lawyers and ethicists with their own interpretive challenge. As the CMO’s 2017 annual report elaborates somewhat helpfully: ‘Realistic Medicine puts the person receiving health and care at the centre of decision-making and creates a personalised approach to their care. It aims to reduce harm, waste and unwarranted variation, all while managing risks and innovating to improve. These concepts will be essential to a well-functioning and sustainable NHS for the future.’ While seemingly focussing on the individual patient in the complex array of resource decisions to be taken, the statement also engenders several unanswered questions regarding values, vision and priorities.
There are parts of the reports worth applauding – parts that I suspect Ken would also applaud. The CMO herself touts the ‘positive’ support for her 2016 report, stating that the Twitter hashtag #realisticmedicine reached ‘almost 10 million Twitter feeds a year after publication’. Foremost praiseworthy is the rejection of paternalistic communication patterns and instead the endorsement of the shift towards a shared decision-making approach between health professionals and patients. This instantiates the core message behind the Supreme Court’s 2015 ruling in Montgomery v Lanarkshire Health Board. Specifically, the CMO should be applauded for encouraging the NHS to develop a better understanding of people’s needs and the factors influencing how decisions are made and consent provided. As the 2017 report observes: ‘Central to this is the principle that the relational factors underpinning conversations about care need to support a partnership based on openness, trust and communication.’ However, whether this ‘principle’ forms a part of ‘realistic medicine’ itself is unclear, as is precisely what the principle comprises.
Another aspect of ‘realistic medicine’ worth cheering is the recognition that there can be overtreatment of patients that causes waste in the health service system and harm for patients (something NHS England also recognises and is addressing). The reports note that this is disconnected from funding concerns – even if there was money in the NHS, overtreatment and waste are serious cause for concern. Laudably, the reports highlight efforts to realise this goal of reducing overtreatment and waste, including the proposed development of a single national formulary and a ‘Scottish Atlas of Variation’ to identify unwarranted variation in care.
…and some faults
However, there is also some room for concern. Reading the 2016 and 2017 reports together, two fundamental questions arise: first, what is meant by ‘realistic’, and second, realistic for whom? Notably, unlike the 2016 report, the 2017 report defines realistic as: ‘1. Having or showing a sensible and practical idea of what can be achieved or expected. 2. Representing things in a way that is accurate and true to life.’ This adjectival addition tacked on to medicine itself begs a question: is this about tailoring our expectations of what current and future healthcare can provide for citizens, or is this about tailoring healthcare to our expectations of what a sensible system of care should look like? If the former, might it mean that we should expect reductions in treatment and care given the dwindling resources available, and that we should take great individual responsibility for our well-being? How is the ‘representation’ of reality to be made, and by whom? If the latter, on what shared principles and values will realistic medicine be based – and what structural changes must be made to realise the vision? Moreover, if we are to turn towards ‘realistic medicine’, just what kind of medicine has been practised to date?
Less clear still is for whom medicine should be realistic. Presumably, the CMO would respond: ‘realistic for everyone’ – patients, health professionals, regulators, and so on. Yet, it is far from clear that the goals set forth in these reports are realistic, much less ‘sensible and practical’, for each stakeholder. Will health professionals have the time and resources to engage in shared decision-making with patients, particularly if this involves saying No to patients seeking particular treatments? If ‘realistic medicine’ is about focussing on the ‘true value to the patient’, who will assess what this true value consists of, and what are the consequential effects on the needs and expectations of the patient, not to mention the taxpaying citizen? Will politicians be realistic in planning for the long-term stability of universal health and social care for an aging population that is incurring increased comorbidities that require social care just as much as healthcare? Indeed, it is worth noting that Scotland lacks a tradition of a whole-system approach to these social support structures, and there are on-going concerns about how this new health and social care integration will be delivered and managed. The specific concern here is that the ‘individual’ risks being characterised differently by two quite different systems, each concerned with its own priorities, limited budgets, and desire not to be overloaded.
What lies ahead?
It is in this conceptual and political haze that two practical worries emerge. First, there is apprehension that ‘realistic medicine’ serves as the latest trend in healthcare policy (akin to Wales’s ‘Prudent Healthcare’ movement) to advance the responsibilisation agenda of the individual patient – framed as consumer choice or a ‘personalised approach’ – but which comes at the expense of collective responsibility and solidarity. Here, I do wonder whether Ken would raise his eyebrows in scepticism. Does ‘realistic medicine’ represent a systemic improvement in care and greater respect for patients? Or, might it signal a further reduction of care to rational choice decisions premised on autonomous actors ‘taking responsibility’ for their own actions in an era of ostensibly increased consumer choice, but genuinely reduced public resources? To that end, might the new tone in medicine be: ‘I’m sorry – that’s just not realistic’?
Second and relatedly, there is worry that ‘realistic medicine’ masks or disregards the underlying structural impediments to realising a healthy healthcare system – ongoing cuts to the NHS, long-term vacancies in health professions, competition between services, added pressure on doctors – that unless addressed with structural solutions, simply will lead to inevitable disappointment and further impairment of the NHS.
Scotland is clearly charting a new path for the NHS. Let us watch and wait – but not passively – to see where this path may lead us. How may ‘realistic medicine’ be realised across Scotland in the coming years? One certainly hopes that it brings better care and respect for patients, better treatment of and respect for healthcare professionals, value for public money, and prevention of waste. At the same time, one hopes it does not produce further erosion of public trust, collective responsibility and social justice. I am confident that Ken, long dissenting of the individualistic turn in medicine, would share such a hope.
Tuesday, 14 March 2017
I still remember very clearly the first time that I met Ken. It was the introductory seminar of my LLM module in Medical Jurisprudence. Whilst having such a wide array of fascinating topics to discuss each week already felt like a treat, the real show-stopper for my fellow classmates and I was having an 89 year old Professor teach us. And not just any 89 year old Professor, but THE Ken Mason, ‘Ken the legend’ as he soon came to be known amongst us. I so looked forward to Wednesday morning seminars, to hearing what Ken had to say about all of the challenging topics that we covered (particularly on reproduction and assisted dying), to watching him debate with his colleagues (sometimes with a mischievous argumentative glint in his eye), to chatting with him over the coffee break, to which he insisted bringing for the class a variety of chocolate biscuits, tea and coffee and his beloved kettle, still going strong since the 1970s we guessed.
A few years on, we set up the Mason Institute in Ken’s honour. We named the Mason Institute blog ‘the Motley Coat’ after Ken’s inaugural lecture entitled ‘Ambitions for a Motely Coat’. I am sitting with a copy of the transcript of that lecture, delivered on 28th February 1974, open beside me as I write. Ken borrowed the title, taken from Shakespeare’s As You Like It, in which he starred as Jacques in a school production many years earlier. Ken reminded those attending his lecture that in the play, Jacques met a jester who impressed him, upon returning to his friends, Jacques proclaimed:
‘and in his brain,
which is as dry as the remainder biscuit after a voyage,
he has strange places crammed with observation,
the which he vents in mangled form
‘Oh!’, said Jacques, ‘oh! That I were a fool; I am ambitious for a motley coat.’
Ken concluded his lecture with the following words:
‘I have tried to show you some ways in which I would hope to justify my appointment by transforming the rather monochrome, unvarying cloth of traditional forensic medicine into what I believe to be a fresh, multicoloured and multi-directional motely coat of community service, resting on a broad base of service to the community in general and the police in particular, fed intellectually by contact with the students of many disciplines and extending arms which genuinely welcome and are anxious to provide a full service of co-operation’.
Given the numerous and vast contributions which Ken made throughout his academic career, it is safe to say that he was certainly successful in his endeavour of transforming forensic medicine into a fresh, multicoloured and multidirectional coat.
Ken was also very much successful in extending his arms out to students and colleagues alike. He was particularly generous with his students, whom he inspired, adored and indulged with endless patience and enthusiasm. I’d often leave his office with another book which he thought I might find interesting, or a new angle to explore in my work, and always with the feeling that my own thoughts and perspectives mattered too. He was constantly encouraging and very much open to genuine debate. He taught me that even after 97 years, it is perfectly acceptable to say ‘I don’t actually know the answer to that’ or ‘perhaps I have changed my mind’, and the importance of listening to others, always with respect.
I remember the first time that I visited Ken in his office, no longer as a student but as a colleague, the year following completion of my LLM. I knocked on his office door one lunchtime, and was greeted by Ken, sitting in his chair, with the cricket blaring on the radio in the background. He was
nibbling away at some of his favourite Jamaican ginger cake. Every so often he would like to have a little rant (ranging from deeply philosophical musings, right up to trivialities on the diminishing quality of Jamaican ginger cake). Often such rants were premised with ‘the only bee in my bonnet is...’.
It transpired that Ken had quite a few bees in his bonnet, all of which were a delight to hear about. His reflections and observations were so insightful and more often than not, injected with a good dose of Ken’s signature humour. Alongside his ability to laugh and to make others laugh, in all of our conversations, no matter what the topic, no matter how Ken was feeling, he approached his colleagues and students with openness, humility and kindness. What also struck me about these rants was that Ken would often end them with a question, he honestly wanted to know what others thought, he was just as interested in listening to and learning from others as he was in sharing his own opinions.
I was always so impressed with Ken’s eagerness and tireless efforts to keep abreast of the latest developments in medical jurisprudence, particularly when office visits turned into home visits. He was keen to discuss the latest case law or journal articles over a few glasses of Bombay Sapphire (indeed that’s when the discussions became even more interesting!)
Ken had so many bees in his bonnet because he genuinely cared, he genuinely wanted to make an impact, to continue in his service to the community. This was evidenced after his ‘official’ retirement, which really only meant that he ceased teaching and continued to write from home. Ken never ceased in transforming the motley coat. I look forward to working with colleagues within and beyond the Mason Institute, in continuing Ken’s legacy, inspired by his dedication to transformation, multidisciplinarity, dialogue, engagement with students, open arms and community service. Now what bee is in your bonnet?....