Bioethics through the Telescope: Institutional Ethics in the NHS

Chapter 8
Bioethics through the Telescope: Institutional Ethics in the NHS

Much of the study of contemporary bioethics concerns issues we observe through the microscope. Its patient-specific focus reflects Beauchamp and Childress’ four ethical principles of autonomy, non-maleficence, beneficence and justice.1 The best text-books also emphasise, for example, the individual rights expressed by autonomy, medical negligence, informed consent, confidentiality, life and death issues and reproductive rights – and this is fine beyond a certain point. But these principles which say so much about my rights today, do not say enough about community interests both now but in the future. They fail to place bioethics arising within the system of healthcare on which our rights and duties are founded. By contrast, the ‘telescopic’ dimension of the subject embraces much wider factors, for example what factors predispose us to illness, rights of access to care and the nature of the institutions which respond to need. These deserve attention because they also shape our rights to care.² Matters of this nature are important to anyone whose healthcare is not based solely on a private contractual arrangement and are becoming increasingly important. Contemporary pressures on public finances make the point. Between 1948 and 2009, spending on the NHS expanded almost every year, amounting today to over £100 billion.³ For the next 10 years or so, however, when many other public service budgets are being cut, the best we can expect for the NHS is flat funding. However, as our ‘obesogenic’ society⁴ requires more care for diabetes, and an ageing population requires more care in later life, real terms investment will steadily decline. NHS England forecasts that ‘continuing with the current model of care will result in the NHS facing a funding gap between projected spending requirements and resources available of around £30bn between 2013/14 and 2020/21’, that is, over 20 per cent of projected costs for 2020/21.⁵ Starkly put, our current model of care is unsustainable. Painful and unfamiliar decisions are inevitable and ‘entitlement rights’ have to be assessed. For example, in England (but not Scotland or Wales), successive governments have turned to the principles of markets and competition between hospitals to wring greater efficiency from the NHS. The Mid Staffordshire Hospital Inquiries (discussed below), however, describe a picture of callous neglect of patients, exacerbated by the drive to respond to market forces. These matters provoke threshold questions which the four principles do not confront. For that we need a telescope to examine matters from a different vantage point.

Sheila McLean contributed to this understanding in a practical sense in the advice she provided to Health Boards on making difficult decisions for whole communities of people.6 Her advice requires us to think about bioethics from a broader perspective: given the general commitment of the NHS to promote social welfare, what structures best support (or hinder) that objective? If the NHS is an example of patients sharing in an exercise in social collaboration, how do the rights and interests of other patients modify the expectations of individuals in isolation? The subject addresses individual patients, systems management, resource allocation and government itself. This chapter discusses some of these questions by considering (1) the ethics of access to care, (2) institutional ethics and the unintended systemic pressures that influence hospital care, illuminated by the Mid Staffordshire Inquiries, (3) institutional ethics in healthcare markets in England, and (4) public health ethics and the tension between the individualism expressed by traditional Hippocratic ethics and the assumption of mutuality, reciprocity and citizenship inherent in social welfare systems. It argues for bioethics to include a broader canvass of concerns in addition to the relationship between doctor and patient.

The Ethics of Access to Care

Let us start with rights of access to care. From a purely clinical perspective, every medical need merits an appropriate response and resource constraints should never stand in the way. For some time, the European Court of Justice (ECJ) took the same view and construed EU law to guarantee hospital care abroad if it could not be provided at home.⁷ But this is fanciful. It is blind to the hard choices required of any system in which demand exceeds supply. Within public systems committed to notions of healthcare solidarity, such an individualistic approach to welfare rights has never been feasible. Today, public services austerity intensifies fundamental questions about health service priorities. For example, if hard choices are unavoidable, is cancer or neonatal care more important than mental health or community care? Is geriatric care as important as paediatric care? As between clinicians, should we spend more on doctors, or nurses; on GPs or hospitals? Within hospitals, should we invest more on computer imaging systems, accident and emergency, intensive care, or cardio-vascular care? Or should we change things completely and invest properly in preventive and community care to stop people becoming ill in the first place? Doing the same as before has often been less controversial than ‘disinvesting’ from existing services and changing priorities, so the most significant influence on NHS commissioning policy has been past practice and acute hospitals have always commanded the lion’s share of the budget. We might think more hospitals are a good thing but when the NHS was founded, 48 per cent of people died before the age of 65. That figure is now 18 per cent and chronic illnesses make huge additional demands upon the NHS.8 A system originally designed for short-term and acute illness in hospital has failed to adapt to long-term conditions needing a range of different treatments in the community. Whereas almost all of the Labour government’s investment in the NHS after 2000 went into acute NHS care, the core business of the NHS has become the complex needs of elderly patients.⁹ Much of the work of hospitals should be transferred to primary and community care so that more is done long before patients reach the crisis which requires highly resource-intensive admission to hospital wards specialising in single episodes of illness.¹⁰ How should we manage the difficult choices required?

In contrast to the individualistic response of the ECJ, judicial review in the UK has been sympathetic to a communitarian response to resource allocation which balances the interests of whole communities of people.¹¹ At present, these principles have been developed only in respect of individual treatments, rather than decisions involving long-term and strategic planning. Nevertheless, the response is founded on procedural rights which acknowledge the ‘political’ nature of the choices required and guarantees a transparent decision-making processes. The courts have not specified exactly how these procedures should work, but they are codified in the English NHS Constitution¹² which requires NHS ‘commissioners’ of care to observe a number of fundamental principles. First, commissioners must publish the process by which choices are made. The process should demonstrate the factors taken into account in decision-making and concede that some treatments will not be available, say because they are very expensive and produce little therapeutic benefit. The Scottish Charter of Patients’ Rights and Responsibilities agrees: ‘Your health board must make informed decisions about how best to share out the resources it has to meet its area’s needs. This means it will not necessarily be able to provide every treatment for every patient’.¹³

Second, those denied access to treatment are entitled to know why.¹⁴ This requires the creation of a general ethical framework within which commissioners can make decisions in respect of particular treatments. The policy in respect of particular treatments should normally have the benefit of a well-informed standing committee composed of clinicians, managers and lay advice. The decision should be based on a thorough appraisal of the evidence of its clinical and cost effectiveness. Transparency demands that both the general ethical framework and the particular treatment policy be made available on the Internet or in writing. If it is impossible to provide all the treatments we need, then fairness demands that the system treats patients equally, fairly and consistently. Third, the system must be sensitive enough to accommodate exceptional circumstances.15 Say I suffer from a condition for which treatment is not normally available because it is too expensive. I should have the opportunity to demonstrate that my circumstances are so different from those of other patients that I should be regarded as an exception. This is easier to imagine if I am biologically different in the sense that treatment that is ineffective in others will cure me. It is more problematic if my claim is based on my social, or non-clinical circumstances, for example that my disease is terminal and I have children to resettle.¹⁶ Here too, patients are entitled to a written explanation and a right of appeal to ensure the rules of natural justice have been properly observed. The second and third ‘transparency’ principles are set out in the NHS Constitution. (Curiously they are not discussed in the Scottish Charter.)

As we move away from particular treatments toward institutional arrangements (that is, the macro-issues of resource allocation), the process becomes increasingly political. For example, do we have too many doctors, should we permit waiting lists to lengthen, how should we expand community care? As we move the focus away from individual patients, so the clinical input at one stage of the process is joined by political and democratic input at the other.¹⁷ These strategic questions involve choices which are not especially clinical in nature. More work is required, especially as NHS resources become more constrained, to understand how these public-centred ethics should be evaluated. At present, our ethical response to these tensions has been limited to the claims of individual patients seeking access to particular treatments. Yet the challenge is to reconfigure entire components of the NHS to promote the interests of the community as a whole. Take preventive care. We urgently need a sustained response to ‘avoidable’ diseases to reduce the burden of illness, both on individuals themselves and the NHS as a whole. Yet this entails disinvesting from hospitals and redirecting resources to, for example, community care and pre-school education. If we fail to take these steps, the NHS will progressively contract and end up as a last resort service. I consider the difficulty this presents below. These decisions involve the public interest and, indeed, the rights of future generations where the politics of democratic legitimacy are probably more relevant than the ethics of individual autonomy.

Institutional Ethics and the Quality of Treatment

So far I have considered the dynamic between the NHS and the community. Let us now consider the tensions within hospitals themselves. The need to do so is amply illuminated by two inquiries into Mid Staffordshire Foundation Trust by Robert Francis QC in 2010 and 2013.¹⁸ Both of the major political parties in England have committed themselves to market forces as the ‘invisible hand’ guiding the NHS.¹⁹ A central component of that commitment has been the creation of Foundation Trust hospitals which are granted additional institutional autonomy if they achieve economic and quality targets set by government. Clinical quality is often assessed by reference to ‘targets’, for example as to waiting times in accident and emergency departments and for admission for elective care. The two inquiries revealed, however, that the drive to achieve Foundation Trust status created an environment that tolerated appalling suffering that may have caused between 400 and 1,200 deaths between 2005 and 2009.20 Targets had been achieved by reducing investment in staff and forcing patients through the system without sufficient nursing care. The result left vulnerable patients at extreme risk of serious harm.

The stories told in the second volume of the first Mid Staffordshire report make difficult reading. Medicines were not administered; patients were left without food and water, not taken to the toilet, told to relieve themselves in their beds and not cleaned afterwards and left for hours on commodes. Those who complained were met with indifference, or hostility. Systems did not exist to pass concerns up through the tiers of hospital management so the board was either ignorant of, or ignored, circumstances on the clinical wards. There was a disconnection between the hospital’s clinical and managerial leadership. This happened because financial targets dominated the hospital’s management agenda so that nursing levels were cut without proper regard to the impact on care. Clearly, the hospital board and individual clinicians should be held responsible for that, either for institutional negligence, or within the Bolam principle. Equally, this happened because of pressure from the Department of Health and Strategic Health Authorities to prioritise the financial targets required for Foundation Trust status which paid insufficient attention to the consequences for patients.²¹ Auditors and inspectors too were subject to the same influence and this helps explain why a hospital suffering such financial stress could win Foundation Trust status, giving it greater autonomy from government, despite systemic failings in clinical care well known to large numbers of patients, relatives and staff.²²

The influence of central targets in Mid Staffordshire suggest circumstances of institutional ‘capture’ of the hospital by government itself and this is not unique to Mid Staffordshire. Maidstone & Tunbridge Wells Hospital²³ and Stoke Mandeville Hospital²⁴ were subject to similar criticism by the Healthcare Commission, and the Health Services Ombudsman published a similarly critical report about the experience of hospital for older people in 2011.²⁵ Elderly and vulnerable patients are most often the victims. An unintended consequence of the drive to achieve Foundation Trust status was the growth of a managerial disregard for patients. Management looked upwards to their political masters, but not down into the hospital itself. Complaints were discouraged so that clinicians became blind to the evidence before their eyes. In one example in which a hospital consultant wrote a critical report of the circumstances surrounding a patient’s death, the hospital’s legal advisors persuaded him to change his conclusions specifically to protect the hospital’s reputation. The intention was to conceal the mistake to promote the hospital’s self-interest.26 Clearly, in a service established only to promote public interests, this is a problem. And beyond the hospital itself, governmental anxiety about reputation-management led to a harsh and insensitive attitude to the problems confronted by NHS managers.²⁷ If the Department of Health under-values its managers, then the attitude of hospital managers towards patients and staff is likely to be affected too. Speaking implicitly to government, the Berwick report noted in its recommendations following the Mid Staffordshire inquiry:

Fear is toxic to both safety and improvement … Time and again, we see the harvest of fear in the Mid Staffordshire story, a vicious cycle of over-riding goals, misallocation of resources, distracted attention, consequent failures and hazards, reproach for goals not met, more misallocation and growing opacity as dark rooms with no data came to look safer than ones with light.²⁸

How can we develop a notion of institutional ethics to cope with these insidious pressures? Lord Nolan’s recommendations, in 1994, for standards of selflessness, integrity, objectivity, accountability, openness, honesty and leadership²⁹