30 March 2017

Scotland’s Turn Towards ‘Realistic Medicine’: What’s in a Name?

By Edward Dove
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.

Some strengths…

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.

7 March 2017

Disabled Dancers: Agents of Change?

By Shawn H.E. Harmon

As Blades notes in ‘Narratives and Agency’,[1] a post on the AHRC project, ‘Resilience and Inclusion: Dancers as Agents of Change’[2] (itself a follow-on to the InVisible Difference Project [3]), it is our belief and ambition that disabled dancers are and ought to be agents of change.  This is in no small part a result of our observations that social justice is lacking in the culture creation setting, where those with disabilities have been marginalised and remain significantly under-supported.  However, as Blades suggests, agency is not at all straightforward, being tangled up, as it is, with social frameworks.  What measures of agency might we rely on to make judgments about whether the arts (and specifically dance) field is moving appropriately toward a greater social equality and representativeness?

Writing in the context of development and social justice, Sen argues that agency is a person’s ability to act in support of what she values and has reason to value, and that it is both intrinsically and instrumentally valuable.[4]  People with high levels of agency can more readily pursue actions congruent with their values, and those without may be alienated from their reality, or be forced to submit to conditions that they decry.[5]  So understood, agency clearly has both internal and external elements, but what elements exist and what do we need to attend to in the context of disabled dance to realise the objective of agency for change?  Sen offers five measures for analysing agency; according to Sen, agency:

1.      is exercised in relation to one’s wellbeing and goals;
2.      must be supported by ‘effective power’ (i.e., the power to achieve desired goals); though this may be exercised by a group rather than an individual, the individual must have the ability to influence processes and exercise choice;
3.      requires ‘capability’ (i.e., the space within which individuals might exercise ‘wellbeing freedom’, which itself might be other-regarding);
4.      is appropriately associated not only with values, but with goals the individual has a reason to value (and so might be differentiated substantively from raw autonomy);
5.      is associated with responsibility to understand one’s role in the prevailing conditions as well as that in realising alternative (better) conditions.[2]

There has been some useful work in support of disability and disabled dance, particularly since the Cultural Olympiad,[6] but what is the current state of the disabled dancer’s agency in relation to these measures?

Our findings in the InVisible Difference Project offer some grounds to believe that disabled dancers have made significant strides in (1) systematically advancing a reasonably cohesive set of goals, (4) articulating cogent and both culture- and rights-based reasons to value those goals, and (5) appreciating the responsibility that leadership imposes on those (pioneers) who have wedged their way into the conscience of the elite dance scene and the dance-viewing public.  However, that project has also demonstrated that disabled dancers are incredibly under-resourced and under-supported with respect to measure (2) and (3), a reality which continues to undermine the just advancement of their roles as creators of culture and agents of change.

This reality must be viewed as an affront to the human rights that disabled persons/dancers hold under the Universal Declaration of Human Rights, the UN Convention on the Rights of Persons with Disabilities, and the European Convention on Human Rights.  And many actors have been complicit in the deficiencies that exist, from arts funders, to dance organisations, to memory institutions, to dance critics, and more.[7]  Disabled dancers need to be much more effectively facilitated in exercising their agency if they are ever to adequately perform their desired, demanded and deserving role as ‘agents of change’, and become equal (and celebrated) creators of culture.

The Online Toolkit mentioned by Blades and the associated film described by Brown,[8] both being developed in the Resilience and Inclusion Project, are just two small steps in the many that are needed to realise this objective, others being further research to ascertain the state of the shortfalls in the above measures.  Let us hope that more funding is made available to help generate the ‘effective power’ and to open up the ‘capability spaces’ that are so needed for real change to occur.

Notes and References

[1] H Blades, ‘Narratives and Agency’, 4 December 2016, at https://invisibledifferenceorguk.wordpress.com/2016/12/04/narratives-and-agency/.
[2] Resilience and Inclusion: Dancers as Agents of Change, at https://invisibledifferenceorguk.wordpress.com/.
[3] InVisible Difference, at http://www.invisibledifference.org.uk/.
[4] A Sen, Wellbeing, Agency and Freedom: The 1984 Dewey Lectures’ (1985) 82 J Philosophy 169-221, at 206.
[5] Ryan and Deci, Autonomy is No Illusion: Self-Determination Theory and the Empirical Study of Authenticity, Awareness and Will’ in J Greenberg et al. (eds.), Handbook f Experimental Existential Psychology (NY: Guilford Press, 2004) 450.
[6] M Sinclair, ‘The 2012 Cultural Olympiad: From Initial Planning to Final Delivery and Beyond’ (2014), at https://www.britishcouncil.jp/sites/default/files/moira-sinclair.pdf.
[7] S Whatley, C Waelde, S Harmon, A Brown, ‘Validation and Virtuosity: Perspectives on Difference and Authorship/Control in Dance’ (2015) 6 Choreographic Practices 59-83.

[8] A Brown, ‘Words, Bodies and Film: The Start of a Journey’, 16 December 2016, at https://invisibledifferenceorguk.wordpress.com/2016/12/04/narratives-and-agency/.

2 March 2017

Research in the context of global health emergencies: writing a background paper for the Nuffield Council on Bioethics.

By Agomoni Ganguli-Mitra and Nayha Sethi

Health care workers at JFK hospital in Monrovia prepare to go into the Ebola ward. © 2014 Kevin Sieff/The Washington Post, Courtesy of Photoshare
In 2016, in the wake of the Ebola and the Zika outbreaks, the international community’s response to global health emergencies and their associated moral, regulatory and political implications once again came under intense scrutiny. For the bioethics and governance communities these were real challenges, forcing us to revisit some of the most difficult ethical questions around pandemics, such as health inequality, weak health system and access to care, and reproductive health. The challenges were all the greater for having to address them within the global (heterogenous) regulatory systems. The response to Ebola for example, developing at the intersection between humanitarian response, care, and research activities - each with their values and goals - brought into question well established ethical norms and practices. It was against this background that the Nuffield Council on Bioethics launched a call to commission research on research in the context of global health emergencies.

We were fortunate to win the commission to take on this work. The brief was clear: we were to produce a background paper on the ethical and governance issues raised by research in the context of global health emergencies. The result was a challenging, but extremely interesting experience for both of us. As newcomers to the topic, there were unexpected obstacles. For example, we spent quite a few hours questioning what might, or might not count as a global health emergency. We also faced obstacles many academics will be familiar with: how to reduce a wealth of literature (relevant regulatory and governance tools, laws, partnerships, practices, actors, cases, practices and lessons-learned) into a short, comprehensive document that would be accessible, and of use to the Council.

In the end, however, teasing out some of the conflicts was one of the most interesting exercises. For example, in the particular context of infectious diseases, how do we reconcile the ‘moral obligation to learn as much as possible, as quickly as possible’ (WHO 2016) with the seemingly equally important norm of not sacrificing care for the sake of conducting research? Perhaps unsurprisingly, then, our concluding section was organised around various sets of tensions:

1. Tensions between ‘response’ and ‘research’: for example, how can care, research and innovation co-exist efficiently and ethically?
2. Tensions within research: for example to what extent can we develop anticipatory ethical and regulatory frameworks for research during epidemics, in a context where oversight and governance need to be particularly sensitive and responsive to evolving and emerging situations?
3. Tensions arising in priority-setting and collaboration: for example, when engaging local, regional and global communities, how do we ensure that all voices are heard and differing priorities are taken into account?

It is not often that academics witness their work being put to immediate practical use. In this case, our background paper served to inform a workshop at the Nuffield Council on Bioethics, to which we were also invited. The event brought together
scientists, physicians, responders, regulators, ethicists and other stakeholders to discuss some of the issues arising from the paper. We have certainly been inspired to think in-depth about some of the issues we encountered while writing. We are grateful to the Council for providing us with the opportunity to do so, and we look forward to continuing to contribute to this important field.

The background paper can be accessed here.

14 February 2017

Why a sugar tax? What the UK can learn from Mexico

By Isabel Fletcher

What is planned and why?

In the March 2016 Budget Statement, the UK government announced that from April 2018, it would tax some sugar-sweetened drinks. Beverages will be taxed at one rate for medium-sugar drinks (5 to 8 g per 100ml), and a higher rate for high-sugar beverages (more than 8g per 100ml). Although often described as a 'sugar tax', it won’t apply to all sugar-containing drinks - flavoured milks and yoghurt drinks will be exempt because of their calcium content.

Sugar-sweetened beverages (SSBs) are one of a number of so-called 'discretionary foods' that are high in calories and low in nutritional value. The UK Scientific Advisory Committee on Nutrition describes their consumption as a risk factor for weight gain and type 2 diabetes. Rates of obesity and diabetes continue to rise in the UK, despite initiatives such as the Change4Life campaign.

1 December 2016

Recent Reports Highlight Key Issues in Regulating Elderly Care

By Catriona McMillan and Nayha Sethi

A recent investigation by the BBC has raised concerns regarding the treatment of individuals in the care home setting. This brings to the fore a number of ethical and legal issues which, considering the increase in ageing population, invite closer scrutiny.

14 November 2016

Water, Health and Social Justice: More Rhetoric than Right

By Shawn H.E. Harmon, Janice Graham, Emma FitzGerald, Tanya Davis

The Arts and Ethics Research Group (AERG) at the University of Edinburgh is an international interdisciplinary research group funded by the Institute for Advanced Studies in the Humanities. Through the collaborative working of individuals from the arts, humanities and sciences, it seeks to encourage new insights and public debate around ethical, legal, and social aspects of the practice and governance of medicine, healthcare, and technologies.[1] While one of its overarching inquiries is about the transformative potential of the arts, its constituent creative teams are exploring three broad themes, one of which is innovation and global justice (i.e., values, interests, and power dynamics in designing and delivering healthcare locally and internationally). In pursuit of this, AERG Creative Team 3 (AERG-3), which consists of a lawyer, anthropologist, visual artist, and poet, has begun an exploration of water, which implicates health, cultural practices, and social justice and wellbeing.

16 August 2016

Trust, Consent and Opt-outs in the Re-use of Health Data: Where Next?

By Graeme Laurie

In June 2016, the National Data Guardian, Dame Fiona Caldicott, published her Review of Data Security, Consent and Opt-Outs in relation to patient confidential data. She did so at the request of the Secretary of State for Health who had asked for recommendations on new data security standards, methods for compliance testing, and a new consent or opt-out model for sharing patient data for care and other purposes, such as services commissioning and research.

Dame Fiona is best known for her six Caldicott Principles for protecting confidentiality first issued in 1997. A further report in 2013 added a seventh Principle – that the duty to share information can be as important as the duty to protect patient confidentiality – but it seems that the message has been not getting through. Furthermore, the fallout from the ill-conceived and poorly executed care.data initiative is widespread in England. Although the 2016 Review did not address this directly, it undoubtedly cast a pall over proceedings (see further: Safe data, safe care).