The emergence of the modern hospital

Sometimes it seems that the hospital is the health system. Whether in popular culture, such as the American television series ER, in political and popular discourse, with its focus on opening and closing of hospitals, in statistical databases that give prominence to numbers of hospital beds, or in budgetary breakdowns, showing that the bulk of health service spending is concentrated in hospitals, it is clear that the hospital is seen as being at the heart of the health system (Reference McKee and HealyMcKee & Healy, 2002). Even when the many other components of the health system are recognized, the hospital typically sits at the top of the pyramid. This is perhaps inevitable. Hospitals are highly visible. They are large buildings, well signposted, and adorned with the symbols of health care, such as red crosses. When politicians wish to make a statement on health services, they typically find a convenient hospital as a backdrop. Hospitals are also important for the public, not just when they are ill, but by providing reassurance that they will be cared for nearby if they become ill in the future. They play other roles too, as settings for the education of the next generation of health workers and through their contribution to the local economy. So even though they are only one part of the overall health system, they are an important part, and are recognized as such by almost everyone.

Yet the concept of the hospital is a relatively recent one. Before the 18th century most people were cared for in their own homes, usually by family members or traditional healers. Institutionalized care, to the extent that it existed at all, was often in the hands of religious orders, providing somewhere that those with incurable illnesses could spend their last days in peace and tranquillity (Reference PorterPorter, 1999). What changed was the scientific revolution. Advances in a number of different areas brought new opportunities. In physics, the discovery of X-rays made it possible to look inside the human body as never before (Reference ReedReed, 2011). Advances in optics paved the way for microscopes, and thus the development of histopathology (Reference WollmanWollman et al., 2015). In chemistry and biology, technical advances made it possible to gain new insights into a patient’s condition from samples of their bodily fluids (Reference MoodleyMoodley et al., 2015). Acceptance of the germ theory led to the emergence of bacteriology (Reference Roll-HansenRoll-Hansen, 1979). Meanwhile, the development of safe anaesthetics and an understanding of the importance of asepsis made possible surgical procedures inside bodily cavities (Reference JessneyJessney, 2012).

The technology required to exploit these developments was rudimentary and there were few with the necessary skills to take advantage of it. There was a need to concentrate resources. The hospital was an obvious setting to bring together laboratories, operating theatres, and X-ray departments. It was also the obvious place to train people in their use.

Throughout the 20th century the opportunities to intervene to save lives and reduce suffering advanced rapidly. Paradoxically, it was from the death and destruction of war that many of the most important developments arose, such as the mass production of penicillin (Reference NeushulNeushul, 1993) and advances in plastic surgery (Reference GeomelasGeomelas et al., 2011), the management of burns, and orthopaedic surgery (Reference DoughertyDougherty et al., 2004) during the Second World War, as well as new approaches to major trauma in the Korean and Vietnam Wars (Reference EisemanEiseman, 1967; Reference MolnarMolnar et al., 2004). The earliest treatments for cancer were derived from chemical weapons, such as mustard gas (Reference MukherjeeMukherjee, 2010).

All of these expanded the scope of work of the acute hospital. Yet there were also changes that were reducing the work of some hospitals. From the 19th century onwards public bodies in many countries had invested in large hospital facilities, typically away from urban centres, in which they could place those with infectious diseases, especially tuberculosis, as well as mental illness. By the early 1950s the introduction of streptomycin had transformed the management of tuberculosis. Death rates in many countries were falling year on year and it was no longer necessary to incarcerate patients for long periods of time in the hope of spontaneous recovery (Reference DanielDaniel, 2006). By the early 1960s new antipsychotics had transformed the management of schizophrenia. Coupled with new models of care in the community, the days of the large psychiatric hospital were numbered (Reference CliffordClifford et al., 1991). Similar changes were happening within the acute hospital. Improvements in hygiene, linked to better living conditions, brought about a dramatic reduction in the number of children requiring admission for infectious jaundice, gastroenteritis, and respiratory infections (Reference Wolfe and McKeeWolfe & McKee, 2014).

But much more was happening in the hospital. Populations were ageing, benefiting from a remarkable increase in our ability to control many common chronic diseases. The consequence was that patients who would have died in previous years, were now surviving but with growing numbers of clinical conditions, a phenomenon termed multimorbidity (Reference BarnettBarnett et al., 2012). Ultimately, many experienced what has been termed frailty, involving decline in a wide range of bodily functions (Reference Nicholson, Gordon and TinkerNicholson, Gordon & Tinker, 2016). When they became seriously ill, they could require inputs from a wide range of health professionals, working together. But it was not just changes in the characteristics of patients. New opportunities to intervene also required new models of working based on teamwork, whether the problem was cancer (Reference PradesPrades et al., 2015), gastrointestinal haemorrhage (Reference LuLu et al., 2014), or major trauma (Reference McCulloughMcCullough et al., 2014). The evidence was accumulating that a multidisciplinary team (MDT), using shared protocols, achieves the best results.

Sometimes, changes in patterns of disease have even more profound consequences. The epidemic of HIV infection that began in the 1980s led to widespread changes in some of the fundamental elements of health care. These ranged from new approaches to infection control, in particular the risk of transmission of infection through surgical and medical procedures, to a new way of thinking about patient confidentiality and informed consent (Reference HayterHayter, 1997). Similarly, the growth of antimicrobial resistance has major consequences for many aspects of care delivered in hospitals and, in the future, is likely to have even greater impact, potentially threatening the fundamental principles on which hospitals are organized (Reference GoffGoff et al., 2017).

At the same time it became increasingly apparent that what was important in achieving the best outcomes was not where treatment was provided but how. In particular, waiting for the patient to arrive at hospital often meant missing important opportunities. Innovative treatments, such as thrombolysis for patients with myocardial infarction, could be initiated in an ambulance on the way to hospital, thereby reducing delays in this time-critical treatment (Reference McCaul, Lourens and KredoMcCaul, Lourens & Kredo, 2014). The use of advanced techniques to stabilize patients at the scene of major trauma meant that they arrived at the hospital in much better condition (Reference WilsonWilson et al., 2015).

It is not, however, only those things that happen before the patient gets to hospital that are important. Changes in family structure and in labour mobility mean that growing numbers of older people, including those with multiple disabilities, are living alone. Once they have completed active treatment in hospital they may have inadequate support at home, reflecting both the breakdown of traditional extended family structures and reductions in services, exacerbated since 2008 in countries that have imposed austerity policies leading to cuts in social care (Reference LoopstraLoopstra et al., 2016). The result in some countries is that much-needed hospital beds are occupied by patients who would be much more appropriately cared for elsewhere, if only appropriate accommodation and support structures existed (Reference Turner, Nikolova and SuttonTurner, Nikolova & Sutton, 2016).

Other technological changes have challenged some aspects of the rationale for the hospital. The original justification for concentrating resources in hospitals stemmed from the need to avoid duplication of three sets of resources: imaging equipment, laboratories, and operating theatres. However, the advent of portable ultrasound machines, coupled with mobile magnetic resonance imaging (MRI), offered new means of seeing inside the human body. Advances in near-patient testing, from the first simple test strips to complex micro-arrays (Reference VoswinckelVoswinckel, 1994), have challenged the role of the laboratory. Injectable anaesthetics, endoscopic procedures, and minimally invasive surgery have enabled what were once major procedures to be undertaken outside hospital. Many treatments that still need to take place in hospital can be completed in hours rather than days, and the pace and intensity of hospital work has changed beyond recognition; however, many processes, ways of working, and individual professional roles have struggled to keep pace.

In summary, the challenges facing hospitals have changed enormously in recent decades. The factors involved are extremely complex and interlinked. However, in broad terms, they can be divided into: changes in technology, including diagnostics and treatments; changes in patients, who have become older, frailer, and often more socially isolated; changes in models of care, involving networks and integrated pathways; and changes in staffing, affecting the need for both specialists and generalists.

The changing policy context within which hospitals operate

The preceding paragraphs have outlined the clinical changes that have driven developments in hospitals. However, there have also been many changes in the broader policy context within which they operate.

The first of these changes is in relation to accountability. For most of the 20th century what a hospital did, and how it did it, was determined largely by the medical profession (Reference FreidsonFreidson, 1974). Typically, each department was headed by a specialist physician or surgeon whose rule was absolute. Each department was largely autonomous, maintaining strict control over staff and resources. There was a tacit assumption that the senior physicians knew best, drawing on their long experience and status. It was inconceivable that their decisions would be questioned, no matter how idiosyncratic they seemed. Their relations with other health professionals, their junior staff, and patients were characterized by deference and, in some elite hospitals, their ward rounds could assume the trappings of a royal visit (Reference OsterbergOsterberg, 1990).

This situation reflected the prevailing approach to the professions. Professions were granted certain rights, in particular that of self-regulation, and high status. Members of professions had accumulated knowledge through a long process of apprenticeship. They were expected to exercise complex judgement, often in the face of uncertainty. It was not clear how anyone from outside the profession could second-guess them. In return, they were expected to maintain high ethical standards and obligations to the public (Reference FreidsonFreidson, 1988).

In all but a few places such situations are no more. There are many reasons. One is a wider societal rejection of deference to authority of all sorts. Another is a recognition that sometimes the professions fail to live up to the high standards they are expected to adhere to, whether in terms of competence or probity (Reference KaplanKaplan, 2007). A third relates to the growing commercialization of health care in some countries, whereby professional knowledge and status are seen as a barrier to the operation of the free market. Although health professionals remain among the most trusted groups in society (Reference Appleby and RobertsonAppleby & Robertson, 2016), politicians and the media are unwilling to countenance the high level of professional autonomy that once existed (Reference RaoRao et al., 2017). The extent to which this has happened varies enormously among countries and in some the concept of the liberal profession still holds sway. In others, however, health professionals are finding their work increasingly subject to high levels of regulation and monitoring, impacting adversely on morale and levels of burnout (Reference ChamberlainChamberlain, 2016; Reference RaoRao et al., 2017).

A second development relates to the explosion in data for monitoring. Health professionals have been monitoring outcomes of patients at least since the days of Florence Nightingale, albeit in very basic ways (Reference CaelleighCaelleigh, 1997). Advances in information technology, psychometrics, and health services research more generally have led to new ways of monitoring health outcomes, often using linked data, for example, to the deaths occurring after discharge from hospital, as well as a wide range of patient-related outcome measures (Reference BlackBlack, 2013).

These developments have facilitated a revolution in methods for assessing quality of care since the 1980s. However, this brings both opportunities and risks. In particular, publication of outcomes by individual health professionals has proven highly controversial, for several reasons. One is the challenge of adjusting adequately for case-mix or attributing an outcome to the action of an individual when the care is provided by a team (Reference Jacobson, Mindell and McKeeJacobson, Mindell & McKee, 2003). A second is the potential for opportunistic behaviour, which can range from changes in recording of patient characteristics to avoidance of those patients at greatest risk of an adverse outcome (Reference BurnsBurns et al., 2016). Finally, there are questions about whether publication accelerates or slows improvements in outcomes (Reference JoyntJoynt et al., 2016). Notwithstanding these concerns, it is clear that hospitals now and in the future will increasingly be evaluated in terms of the health gain that they bring about and not just the money they spend and the patients that flow through their wards.

A third issue, also related to the first two, has been the emergence of what has been termed “patient safety” on the policy agenda (Reference LongoLongo et al., 2005). While overlapping to some extent with the concept of quality of care, this explicitly reflects a recognition that hospitals may, on occasions, damage health. This can happen in many ways (Institute of Medicine, 2001). Failures to put in place appropriate procedures can lead to patients receiving the wrong treatment, for example, an incompatible blood transfusion, a drug to which they are allergic, or even a surgical procedure on the wrong patient or on the wrong side of the right patient. Recognition that this is a problem has led to new organizational structures, to ensure that problems are identified early and dealt with effectively. Lessons have been learnt from other sectors, such as the system used by airline pilots experiencing near-misses (Reference Nicholson and TaitNicholson & Tait, 2002).

A fourth issue is a change to the way in which hospitals are funded. Traditionally, hospitals receive their funding in a number of ways, including historical budgets and payments per patient or per bed day (Reference McKee and HealyMcKee & Healy, 2002). However, the recognition that patients with different conditions incurred very different levels of expenditure created pressure

for a much more differentiated system. The result in many countries has been the implementation of some form of activity-based system, typically based on the diagnosis of the patient and the procedures they undergo, with the best-known being versions of the American Diagnosis Related Groups (Reference Busse, Geissler and QuentinBusse, Geissler & Quentin, 2011). These systems are designed to incentivize hospitals to increase their efficiency, treating each patient with the minimum necessary resources. One consequence has been to bring about reductions, often substantial, in length of stay. Often this is a good thing, given the risks associated with being in hospital for prolonged periods (Reference AsherAsher, 1947). However, it presupposes that patients have somewhere safe and supportive to go to.

A final set of issues facing hospitals relates to the broader political context and, specifically, whether health care is seen as a tradable or a public service (Reference StarrStarr, 2008). In some countries, where the latter view has so far prevailed, hospitals are increasingly being seen as corporate entities and profit centres. This creates a powerful incentive to work in isolation, notwithstanding the importance of collaboration across the entire patient journey. Elsewhere, there is an increasing emphasis on networks, allowing patients to move freely within a system, obtaining routine care close to home when needed, but also access to advanced specialized services and specialized facilities if required. In a number of countries there has also been a significant growth in the number of hospitals that are part of groups, partly as a way of responding to some of the challenges detailed here but also as a method of reducing costs and improving quality through standardization and a greater role for professional management.

As with the changing clinical context, these issues are well recognized by those working in hospitals, but less often by those elsewhere who may be responsible for decisions that have profound consequences for hospitals and those who work in them. We believe that there is a need to bring all of these issues together: something that we have attempted to do in this book.

Rather than seeing hospitals as discrete entities within the health system that are often viewed in a mechanistic way through metrics such as numbers of beds or physicians, we view hospitals as complex adaptive systems, each containing a multiplicity of subsystems, some dealing with patients with particular conditions, such as a surgical department for example, while others provide resources that are shared among many of the other systems, such as operating theatres and pharmacies.

All of these systems interact with each other and are shaped by these interactions (Reference ChecklandCheckland, 1981).

We can only understand how they operate by looking at all levels, from the individual interaction between the patient and health professional through to the design and operation of the facility. However, this approach also recognizes that hospitals are situated within a broader health system, the optimal functioning of which depends on the linkage of many parts. This includes prehospital and post-discharge care. It also includes linkages to the training of health professionals, and the research and development that generates the knowledge on which effective care should be based. All of these systems and subsystems are operating in a rapidly changing environment, involving: the patients and their conditions; the opportunities to intervene, including technological advances and evidence on innovative models of care; and the broader policy and political context in which health care is delivered.

Consistent with the wider discourse in health policy, we have chosen to take a patient-centred approach. Pragmatically, this creates a problem. On the one hand, as we have noted, growing numbers of patients have multiple, complex needs and cannot easily be placed into individual categories. On the other hand, it is necessary to simplify our approach to make sense of the complexity. Consequently, in this book we have focused primarily on the acute general hospital rather than single speciality or specialized hospitals, long-stay facilities, and those providing restricted services or mainly convalescence (although in some chapters we do consider specialist hospitals too). We have looked at a number of the most important activities in which hospitals engage, defined by the conditions of their patients.

Meeting the needs of patients

We now look at the areas of hospital activity that are discussed in this volume. It is impossible to cover everything that is done within the hospital. Nor is it easy to create a simple taxonomy of the areas we could have covered. Consequently, we have selected a series of examples, looking at different patient groups, defined variously by age, disease process, and type of treatment, as well as some other areas where scientific advances have led to changes in patient management, such as imaging and laboratory science. While each contains a number of issues specific to the topic of the chapter, collectively they highlight many issues that have applicability more widely.

We start with children, the subject of Chapter 2 in this book. As noted above, the population of children in hospital has changed beyond all recognition in the last four decades. The wards that were once filled with children with common infectious diseases have gone. So has the generic paediatrician who once would have cared for children from birth to adolescence. Instead, there has been a remarkable diversification, of necessity given the high level of specialist skills required in many of the new areas that have emerged. This is perhaps most apparent with neonatal care. In 1975 one in every two premature newborns with a birthweight of less than 1500 g died in the perinatal period. By 2009 this had fallen to one in eight. Moreover, an increasing proportion of births in some countries are at low birthweight, as a consequence of multiple pregnancies related to in vitro fertilization. This has had enormous implications for both obstetrics and neonatal paediatrics, although not without controversy, as it has brought into sharp relief the tension between centralization, specialization, and medicalization on the one hand and a vision of birth as a natural event, involving a partnership between the mother and her midwife that is usually free from complications. Clearly there is a challenge in getting the balance right. However, this can only be done by close coordination between the different facilities providing obstetric and neonatal care. It illustrates perfectly the need for clinical networks of hospitals and other settings for childbirth working together collaboratively.

The chapter also looks at developments in care for older children. This is also an area that has been transformed by the creation of new knowledge (Reference WolfeWolfe et al., 2013), although there is enormous diversity among European countries (Reference EhrichEhrich et al., 2015). One result is increasing specialization. As with adults, it is not possible to expect a single physician to be an expert in the many body systems in which problems may arise. Moreover, as is frequently pointed out, children are not simply small adults. Consequently, there is a need for the specialist knowledge that paediatricians bring to these areas. The difficulty is that many of these diseases are relatively uncommon. Services must be concentrated to be viable, leading to the growth of highly specialized paediatric centres. This can be a major challenge for many small countries, in this case calling for networks that extend beyond national frontiers (Reference SalibaSaliba et al., 2014). Finally, it should never be forgotten that children should be kept out of hospitals as much as possible. Their physical, mental, and social development is best achieved at home with their families. As the chapter shows, there is much that can be done to make the hospital as friendly as possible for children (Reference EhrichLenton & Ehrich, 2015). However, although it may sometimes be needed, admission of children to hospital should always be a last resort.

The third chapter moves to the opposite end of the age spectrum, looking at one of the most common afflictions of middle and old age: stroke. Fortunately, the incidence of stroke has been falling dramatically in many high and middle income countries, largely as a result of improvements in the detection and management of hypertension (Reference LacklandLackland et al., 2014). However, as populations age, the absolute number of people affected by stroke is rising. The management of stroke has been transformed in recent years. Even as recently as the 1990s, many patients with stroke would simply be admitted to hospital to await a hopefully spontaneous recovery. Now, the focus is on early recognition of symptoms and signs, rapid transfer to hospital, early diagnosis using brain imaging, and definitive treatment. All of this must be achieved within a few hours and, if it can be, levels of disability can be reduced greatly. In a number of places, stroke services are organized on a population basis, reaching outside the hospital to begin the process of restoring blood supply to the affected part of the brain as soon as possible (Reference Alonso deAlonso de Lecinana et al., 2016; Reference Turner, Nikolova and SuttonTurner et al., 2016), in some cases using ambulances with computerized tomography (CT) scanners linked by telemedicine to specialist centres (Reference EbingerEbinger et al., 2014). However, this is only the beginning of the process, with subsequent management seeking to tackle the reasons why the stroke occurred, to prevent it recurring, and to provide the rehabilitation necessary to make as full a recovery as possible.

Once again, this chapter makes a very strong argument for a comprehensive approach to, in this case, a particular condition. This involves measures that address all of the building blocks of the health system, including a trained workforce, appropriate technology, and high levels of training. Yet, as it also shows, there are many barriers to achieving this and – still – great variation in the outcomes of treatment. This is an area where there are many opportunities for shared learning and comparisons of policies and practices.

The fourth chapter looks at a group of people whose numbers are growing rapidly but who often fall through the gaps in the hospital system (Reference Oliver, Foot and HumphriesOliver, Foot & Humphries, 2014). These are frail elderly people. Successes of modern medicine have allowed many more people to live into old age, albeit while experiencing the consequences of multiple disorders and declining bodily functions. Yet, with appropriate support, they can still live a fulfilling and satisfying life. The loss of functional reserve does, however, mean that they will require specialist advice in hospital outpatient clinics from time to time, and are prone to episodes of illness when they will require treatment in hospital. The challenge, in an increasingly specialized hospital system, is how best to design hospitals that are appropriate to their often complex needs (Reference Crews and ZavotkaCrews & Zavotka, 2006) and how to manage individuals who may have disorders of four or five different body systems, drawing on evidence such as that showing how procedures like comprehensive geriatric assessment can improve management and outcomes (Reference EllisEllis et al., 2011).

This chapter looks at some of the more innovative approaches to responding to the needs of this vulnerable group of people. It includes the creation of care coordination mechanisms, whereby they are helped to navigate through the complexities of the health care system, and in particular, avoiding the risk of falling through the gaps. It also includes the availability of rapid access and response teams, located either in hospitals or in the community, but able to provide assessment and treatment wherever it is needed (Reference WrightWright et al., 2014). In some ways, the process of ageing is the mirror image of development in childhood. Just as with children, frail elderly and, especially, confused people can find hospitals unfamiliar and disorientating. Yet, as with children, there is much that can be done to ensure that hospitals are friendly to older people when they do need to be admitted. One solution is the creation of dedicated frailty units, where patients can be cared for by specialized nurses with experience in issues such as falls, dementia, and incontinence (Reference ConroyConroy et al., 2014). And finally, it involves attention to hospital design, to ensure that the accommodation in which frail elderly people find themselves can meet their needs and expectations as effectively as possible.

The fifth chapter looks at another complex problem: cancer. This is an area that has been in the forefront of developing networks and multidisciplinary teams, recognizing the need for patients to be able to move seamlessly through a complex system from diagnosis to treatment and, if this is unsuccessful, to palliation. Often the management of cancer is straightforward, with surgery or radiotherapy achieving high levels of cure. But in many cases it is extremely complex. There have been remarkable advances in our understanding of the biology of cancer cells, leading to innovative new treatments that target them precisely. However, this can only be achieved with close working between a wide range of specialists. As with many of the other areas considered in this book, this increased knowledge has brought about a high level of specialization, with oncologists, or in some cases teams of surgeons, interventional radiologists, oncologists and others working together, now increasingly specializing in cancer of a single organ.

Cancer care has also been at the forefront of monitoring and evaluation, with most countries having well-functioning cancer registries. This has made it possible to identify, and in many cases explain, variations in outcomes. In some countries this knowledge has contributed to major reorganizations of cancer services, and in particular the creation of integrated networks. Yet again, cancer reveals the importance of organization, with collaboration rather than competition among hospitals.

The burden of disease in high income countries is dominated by chronic disorders. Increasingly, these are managed out of hospital. This was not always the case, and even now in many countries people with diabetes spend long periods in hospital, especially if they have complications. To illustrate the challenges involved in the hospital management of chronic diseases, we have selected, for the sixth chapter, one condition: chronic obstructive pulmonary disease (COPD). In most cases, those affected will be managed outside hospital, but they will, from time to time, often experience exacerbations that require admission. As with stroke, in the past such patients were often admitted, treated, and discharged. Many of them would return frequently, especially in winter, so they became well known to the hospital staff. As this chapter shows, treatment has been revolutionized by new approaches to the active management of this condition, and in particular a major focus on prevention, involving measures to improve lung function. Yet, as with stroke and cancer, there are still large variations across and within industrialized countries in the extent to which services for these people have moved from a reactive model to one that actively seeks to restore them to as good health as possible.

The seventh chapter deals with that part of the hospital that has come, in the popular imagination, to represent acute health care. This is the case of emergency medicine. As with all of the other areas, this has changed remarkably. Traditionally, the emergency department functioned as the front door of the hospital, through which an undifferentiated mass of people, with problems ranging from the trivial to the life-threatening, would pass. Those in the emergency department were confronted with the challenge of sorting them out, deciding which required immediate treatment and which could wait. Mixed among them were children, often exposed to sights that they would be forbidden from watching in a movie theatre. Now, however, the management of the acutely ill patient often begins before they ever reach the hospital, with trained paramedics commencing treatment in the patient’s home, at the roadside, or in the ambulance. Once they reach the hospital, they are triaged rapidly, their needs prioritized, and appropriate treatment begun as rapidly as possible. As with the conditions discussed in the other chapters, technological advances have transformed many aspects of emergency medicine. There has been a growing recognition of the importance of early stabilization and resuscitation and in many cases definitive treatment. Yet again, this demands a high level of organization. Teams need to be brought together, they need shared protocols, and they need to be present, with the appropriate equipment and facilities, at all times.

The eighth chapter looks at another aspect of the work of the hospital that, for many people, characterizes it. This is what happens in operating theatres, but now increasingly also what happens before patients get to theatre and how they recover afterwards. Technological advances, for example in intravenous anaesthesia, allowing people to recover rapidly, as well as in minimally invasive surgery and interventional radiology, have transformed surgery. For many people, especially if they are young and healthy, this means that a procedure that would once have required an admission over several days can now be completed within hours, allowing them to return home that evening. However, these advances have also lowered the threshold for intervention, especially with regard to those whose conditions might once have precluded surgery (Reference MougMoug et al., 2016). This, coupled with new opportunities for the more complex types of surgery, means that there is an increasing need for post-operative care, which has developed into a specialty in its own right. Again, this is something that requires careful planning, not just to put the systems in place, but to ensure the flow of patients through the hospital.

The final two chapters look at two of the reasons why the modern hospital developed in the first place: laboratories and imaging. As noted earlier, these are areas that have changed remarkably, in many different ways. Once, an imaging department depended on X-rays to look inside the body. Now, it can call upon ultrasound and MRI, with the bodily

organs highlighted using a multiplicity of contrast agents and, in some cases, radioactive tracers. It can do so with a precision undreamt of in the past, allowing the radiologist to view the patient in three dimensions and creating a form of virtual reality. In parallel, a new specialization has emerged. This is interventional radiology, where endoscopic instruments are manipulated under radiographic guidance, making it possible to undertake major proceedings without actually opening the body cavities. However, this has created tensions in some countries, with demarcation disputes between this new group of interventional radiologists and surgeons (Reference Baerlocher and DetskyBaerlocher & Detsky, 2009).

Laboratory medicine has also changed, again driven by advances in technology. There has been a remarkable growth in opportunities for near-patient and self-testing (Reference Larsson, Greig-Pylypczuk and HuismanLarsson, Greig-Pylypczuk & Huisman, 2015) but this has also created challenges as the results must frequently be interpreted by those with the expertise and ability to make an assessment of the whole patient. Increasingly, this means that pathologists are moving out of the laboratory, becoming part of the MDT caring for the patient, advising on the most appropriate tests that should be done and how their results should be interpreted, especially in patients that have multiple disease processes simultaneously.

Conclusion

As this introduction shows, the work of the hospital has changed beyond all recognition in a few decades. Yet its design has often failed to keep pace with these developments. In the final chapter, we will look at some of the challenges that face the hospital in the future. These include the growth of antimicrobial resistance, a problem that has largely been created by hospitals in the way that they operate. Yet there is now extensive evidence that the design and function of hospitals can do much to prevent its emergence. They also include the need to design hospitals in ways that take account of the needs of different groups of patients (Reference Rechel, Wright and EdwardsRechel, Wright & Edwards, 2009). As discussed already, these include children and frail elderly people. There are already many examples of good practice, with designs that address their needs, but too often there is a sense that the hospital has been assembled with no thought about those who will use it, whether this involves the use of materials that amplify noise at night, thereby preventing people from sleeping (Reference DuBose and HadiDuBose & Hadi, 2016), or the lack of signposting that allows people to get lost (Reference Wright, Hull and LickorishWright, Hull & Lickorish, 1993). Finally, it is often forgotten that those who spend the most time in hospitals are not the patients but the staff. At a time when many countries are facing acute shortages of health workers, it is essential that the hospital is configured in a way that is welcoming to them and allows them to do their work as effectively and efficiently as possible.

Above all, the pace of change is so rapid that it is essential that those facilities being designed today are built in a manner that is flexible, and allows them to adapt to these changing circumstances. We hope that this book will assist those who, in whatever role, are interested in hospitals and, in particular, how they can best meet the needs of patients and staff in the future.

Child health care in Europe

The role of the hospital in caring for children has changed beyond recognition in the past five decades. On the one hand, the conditions that were once responsible for most bed occupancy, such as respiratory tract infections, gastroenteritis, and hepatitis A, are now far less common and, when they occur, are managed at home in all but the most severe cases. On the other hand, advances in medicine and technology, coupled with better understanding of genetics, metabolic and neonatal medicine, new treatments for cancer and acute/chronic organ failure, advances in surgical techniques, and new ways of managing severe mental disorders, have created a need for services that did not previously exist (Reference WolfeWolfe et al., 2013). Consequently, the hospital continues to play a key role in the health care of children, albeit one that is rapidly adapting to the changing needs of sick foetuses, newborns, infants, children, and adolescents. Hospital services for children must also be able to work closely with other parts of the health system and beyond, reaching out to wider services for children including education, prevention, long-term outpatient care for children with rare diseases, and primary care out of normal hours. Yet a survey conducted in 2015 revealed great diversity in hospital services for children in the 53 countries of the World Health Organization’s European region (Reference Ehrich, Namazova-Baranova and Pettoello-MantovaniEhrich, Namazova-Baranova & Pettoello-Mantovani, 2016). Differences are apparent even at the most basic level: the definition of a child. The age at which young people are no longer managed in children’s hospital services varies among countries. In 53% of countries childhood is defined as up to 18 years of age, but in one country it is up to 11, in three up to 14, in four up to 15, in six up to 16, and in one up to 17 years of age. Two countries reported the upper age limit for children in paediatric services to be 19 and in one country it is 26 years (Reference EhrichEhrich et al., 2015a).

There are also considerable variations in the settings in which children receive hospital care. A 2009 survey conducted by the European Paediatric Association identified four different types of children’s hospital in Europe: 1) general children’s hospitals and paediatric units (or paediatric wards) within larger hospitals for adults; 2) stand-alone children’s hospitals; 3) university children’s hospitals; and 4) mother and child centres. Day clinics and neonatal intensive care units (NICUs) were found in all four types of hospital. There are also major differences in infrastructure, such as diagnostics and therapeutics, especially high technology equipment, as well as organizational arrangements and markers of quality.

As with every other aspect of medicine, health services for children must adapt to a rapidly changing landscape. One way in which this landscape is changing is the demography of Europe. With a falling birth rate, Europe is facing a declining child population. The mean shares of the total population aged 0–14 years and 0–4 years in Europe were 21.2% and 6.4% respectively in 1982 but these figures had fallen to 15.2% and 5.0% in 2014. The scale of the change can be seen from looking at three countries, Belgium, Ireland, and Portugal, where the fertility rate decreased from 2.54, 3.78 and 3.16 respectively in 1960 to 1.75, 1.96 and 1.21 in 2013 respectively (Eurostat, 2016).

This demographic change, coupled with changes in disease patterns and treatment settings, has contributed to a large reduction of hospital beds and to the closure or merging of children’s hospital facilities and thus is challenging conventional ways of thinking about hospital facilities for children. Traditionally based on a division between primary, secondary, and tertiary care, new models of care seek ways to innovate and improve the whole system. The changes are complex and do not simply involve crude reductions in hospital capacity. For example, on the one hand, the decline in the incidence of communicable diseases through immunization programmes, as well as injuries through injury prevention programmes, has caused a decrease in the need for care and consequently hospital admissions. On the other hand, medical and surgical advances, in areas such as neonatal surgery and intensive care, oncology, and interventions for inherited diseases, are increasing the need for highly specialized care that can only be provided in tertiary hospitals. At the same time, there is a continuing burden of chronic diseases – some attributable to increasing risk factors, such as childhood obesity, and some to improved survival of previously fatal conditions, such as malignancies and certain inherited disabilities. This has created a greater need for specialist care that transcends the hospital and the community (Reference Wolfe and McKeeWolfe & McKee, 2014), a need that is also increasing because of the improved survival of very low birthweight babies, some of whom are living with long-term disabilities. These children require sophisticated diagnostic and therapeutic interventions delivered by well-trained personnel using technologically advanced infrastructure.

In addition to the complications created by the increasing specialization of care provided for children in hospitals, there is a growing recognition of the importance of designing systems from the perspective of the user rather than the provider of services. This is exemplified by the call to design “a hospital that does not feel like a hospital”. This thinking has been captured in the Council of Europe’s “Child-Friendly Health Care” approach, which was endorsed by 47 ministers representing the nations of Europe (Reference Lenton and EhrichLenton & Ehrich, 2015) (Box 2.1). This approach brought systems thinking and values based on the United Nations Convention on the Rights of the Child together into a practical framework to plan, deliver and improve services for children and families. The child-friendly health care approach builds on patient-centred care and patient pathways. The responsibility of the health system is to ensure that all the component parts are in place and working well together to achieve the best possible outcomes. This can only happen if appropriate child health care networks, based on collaboration (Future Ho . This spital Commission, 2013), can work together to improve quality continuously. Crucially, the hospital is a key element of these networks. Despite the shift from inpatient to outpatient care and the fall in the mean duration of stay in hospital the hospital is still very important. Although their work often extends beyond the walls of the hospital into the community, it is still the case that in many European countries about half of all paediatricians are still hospital-based (Reference EhrichEhrich et al., 2015a).

Clearly, in the light of the preceding discussion, there is no simple way to structure a chapter on the care of children in hospital. Consequently, we have taken a pragmatic approach, looking first at the highly-specialized care of newborn infants, followed by the care of older children with common conditions requiring hospitalization, and then the provision of highly specialized care in tertiary hospitals. We then review some common patient pathways, illustrating the inter-linkages between the different elements of the system before looking to emerging developments that may impact on the health system response to children in the future.

Maternal, neonatal and follow-up care in specialized facilities

Secondary care for children

While much childhood illness can be managed in primary care, there will inevitably be children who require hospitalization in secondary care facilities. Table 2.1 sets out some examples of such conditions. However, the numbers involved will depend not only on the burden of disease in the population but also on the scope and quality of primary care, which varies greatly around Europe. Policies in many countries have sought to reduce unnecessary admissions to hospital as they are

distressing for children, cause problems for parents, and are usually a less cost-effective way of treating acute illness. On the other hand, delayed referral of severely sick children to hospital may lead to preventable complications and death. Closing the organizational gaps between primary and secondary care for children is therefore an important task.

It is important to see the hospital as only one element within the wider health system. However, the way in which the hospital interacts with the other elements of the health system will vary, influenced by the organizational characteristics of the system. Across Europe, the responsibilities of hospitals caring for children are not uniformly defined and vary between countries and even regions within countries. Furthermore, they may vary according to whether the hospital is publicly or privately owned, with the former typically responsible for providing a comprehensive range of services while the latter can select those areas that are most profitable and incur least risk to the provider. Figure 2.1 illustrates these relationships, with the hospital bringing together a range of specialist expertise.

Figure 2.1 The position of hospital care for children within the health system

Source: Authors’ compilation

Where in the system a child is treated will vary according to a range of factors. However, even within a single system, the boundaries are not necessarily clear. Decision-making processes relating to treatment and referral are subject to different rules and regulations of the health systems, but also policies about what services to offer in what facility, themselves influenced by the interests of the health care personnel involved. For instance, the management of many long-term conditions, such as asthma, diabetes, or coagulopathies, may be provided in different settings in different countries. Despite the existence of such variations, it is desirable that those responsible for managing and providing care in hospitals should find ways to achieve consensus with primary care physicians and tertiary care paediatricians on standards to be adopted for infrastructure, facilities, staff, and quality of medical treatment.

Recognizing that, where possible, children and adolescents should be managed in settings other than in hospitals, when they are admitted they are entitled to have certain expectations:

• To be welcomed by friendly staff, whether doctors, nurses or others

• To be adequately informed about what is to be done and when;

• To have the option to be accompanied by mother, father, and other relatives;

• To be treated according to modern standards of evidence-based medicine;

• To experience as little pain as possible;

• To receive age- and disease-appropriate treatment;

• To be treated by staff trained to communicate with children and parents;

• To experience a private and respectful atmosphere whenever possible;

• To be properly informed about all procedures and results of investigations;

• To stay in hospital for as short a time as possible;

• To receive adequate information about further treatment;

• To receive full treatment free of charge.

These expectations of patients and their care takers are consistent with the Charter of the European Association for Children in Hospital (EACH) (Box 2.3) (European Association for Children in Hospital, 2015).

Highly specialized paediatric centres (tertiary care)

Expert specialist care is essential for the diagnosis and treatment of rare conditions and for children who require complex investigations and highly technical interventions, such as transplantation. This care typically requires sustained collaboration between different specialists and subspecialists to ensure optimal outcomes. However, while anecdotally it is known that there are different models of care, these have not, to our knowledge, been documented in detail.

Less well resourced countries in central and eastern Europe face the dilemma of how best to develop and fund specialist care in the future. Better resourced countries in western Europe face the problem of how best to rationalize and co-locate interdependent specialist services to improve outcomes. Small countries must find ways of developing effective cross-border care with larger countries, drawing on the many existing examples such as that between Malta and the United Kingdom (Reference SalibaSaliba et al., 2014).

One of the key questions facing those organizing specialized paediatric services is how best to balance centralization and decentralization. There are various arguments for creating a small number of large centres that can concentrate expertise and equipment, can create multidisciplinary teams, and can provide 24-hour services where necessary. The last of these is particularly important as it typically requires about 10 individuals to provide round-the-clock service, a number that can only be justified if there is sufficient caseload. The question of whether concentration of services achieves better outcomes has been debated extensively. There is clear evidence to support this for some services, such as neonatal intensive care and cardiac surgery. However, the evidence is rather more limited in other areas. It is also important to recognize that concentration of services in large centres, especially in countries with low population densities, can create a significant barrier to access, although it may be possible to compensate for this by the development of outreach services, whereby specialists travel from tertiary centres to other facilities. These decisions about how to provide highly specialized services are complex and require many, often competing, objectives to be balanced (Reference EhrichEhrich et al., 2015a).

These decisions must also be informed by considerations of which specialties should be co-located. The current situation is characterized by significant differences in care across European countries. One fact is the absence of consistent European definitions of either specialist care or specialist centres. There are also differences in training programmes and assessment, both within and between specialties, with 38 different accredited paediatric subspecialties reported in a European Paediatric Association survey in 2014 (Table 2.2), which exceeded the 22 recognized in the USA in 2012. Individual European countries recognize between 0 and 20 separate paediatric subspecialties (Reference EhrichEhrich et al., 2015a). This also poses challenges to those organizing training programmes, especially where the numbers of physicians in particular subspecialties are very low. However, the situation is further complicated by the scarcity of data on the numbers and qualifications of specialists in most countries. There is also little information on scope of practice and required competencies.

While recognizing these difficulties, it is possible to suggest the most important interdependencies among specialties (Figure 2.2). Where possible, those services with clear interdependency should be co-located. For example, a centre undertaking organ transplantation should also have the expertise necessary to provide care in haemato-oncology, cardiology, nephrology, metabolic medicine, paediatric surgery, and a paediatric intensive care unit (grey squares), while subspecialties such as endocrinology (white squares) are not required. Tertiary care children’s hospitals should have departments of child psychiatry and psychosomatic care in the same building. Transition and transfer of adolescents from paediatric to adult care should also take place in the same hospital, where possible (Reference CrowleyCrowley et al., 2011). Finally, the teams caring for children in hospital include teachers, who face particular challenges in meeting the needs of children who may divide their time between hospital and home over a prolonged period.

Figure 2.2 Appropriate co-location of paediatric subspecialties

Source: Authors’ compilation

The organization of services should be viewed from the perspective of both the child and their family and the health professionals working in the service. For the child and their family, it is important that all parts of the system should be in place and working well together with specialist advice easily accessible, but delivery should be as close to home as is safe and sustainable. This suggests the need to develop networked solutions where all those involved actively collaborate and constantly strive to improve safety and experienced outcomes. From the perspective

of the health professional, the specialist centre should not be seen as a “stand-alone” institution but as part of a well managed clinical network that promptly refers the most appropriate children and simultaneously receives children back into the local system for rehabilitation after specialist care. Clinical leadership for specialist care resides with the centre which organizes shared care with clear clinical care plans, with training and joint clinics for local teams. The local team should organize routine health and social care and education as appropriate. This model, based on good two-way communication, has already been achieved in some cancer and neonatal networks. The ideal system can be summarized with the phrase “centralized specialization and decision-making, but decentralized provision of treatment whenever possible”.

It is important to recognize that there is a risk that highly specialized paediatric subspecialty care may lead to fragmentation (Reference EhrichEhrich et al., 2015b). Consequently, especially where a child has multiple health problems, there is a strong argument for oversight of their care being undertaken by a general paediatrician, who can work closely with the child and their family. As Reference VohraVohra et al. (2012) state, “paediatric integrative medicine should be the paediatricians’ new subspecialty” to bring specialist care together.

In summary, there are many challenges in providing highly specialized paediatric care in Europe but there is a limited evidence base to inform the decision-making process. The most urgent questions needing answers include:

• how best to plan an adequate number of specialist centres, where appropriate, taking account of possibilities created by the European Union Directive on Cross Border Care, so as to avoid both under-provision and over-supply;

• how to develop a sustainable workforce to meet the medical needs of children; many different factors must be taken into account, including geography, population distribution, transport links, and relationships between centres;

• how to balance any benefits from centralization with problems of access, recognizing that while most families will accept travelling long distances to receive episodes of specialist investigations or treatment, it is desirable that regular visits, for example for administration of treatment or follow-up, should take place as close to their homes as possible.

Typical patient pathways

We now look at the health system as seen through the eyes of the child. We do this by describing a series of journeys undertaken by children with four common conditions: an acute infectious disease, a chronic illness, a critical condition, and an illness requiring new technologies.

Future trends

The care of children has changed remarkably in the past few decades and will continue to do so. Many of the same factors that drove changes in the past will remain important, including advances in technology, models of care, and professional roles. However, it is likely that there will be particularly important advances in information technology, enabling care to be coordinated across many different settings. A number of these key drivers for change are set out in Table 2.3. Beyond these individual drivers, it is clear that there will be a need for much greater integration of services, with child-oriented care delivered jointly by child health professionals working in different locations.

Conclusions and key messages

Existing systems providing secondary health care for children are facing several major challenges. First, there is enormous variation in the quality and nature of care provided for children across the European region, including differences in financial resources, organization of health care, and access to skilled health professionals and advanced technology. Second, the care of sick children has undergone a process of fragmentation, largely reflecting new opportunities to intervene, driven by scientific and technological advances. However, this fragmentation risks being exacerbated by organizational changes in some health systems. Third, although the sick child is on a journey that moves between different levels of care, they and their parents will often be challenged by structural and organizational barriers between primary, secondary, and tertiary care. Finally, all health systems are facing upward pressure on costs, with some aspects of paediatric care, including neonatal intensive care and highly specialized tertiary care, being especially vulnerable.

Many of these challenges apply equally to the provision of hospital care for adults. However, there are some specificities (Box 2.4). All hospitalized children should be admitted to children’s wards and not to adult wards, and those caring for children in hospital face some additional challenges. For example, while it is the child who is being treated in hospital, it is important to find ways to include other members of the family in the process, for example by the creation of family-friendly facilities. It is also the case that children are not simply small adults and many can find the clinical environment frightening, so it is important to incorporate elements of design that create a child-friendly environment (Boxes 2.1 and 2.2). As with any patient with a complex chronic disease, care is increasingly being delivered by multidisciplinary teams but, in the case of children, these teams extend beyond the health sector to the education sector. There are many opportunities for learning from the different models of care seen in Europe but this will require considerable effort to overcome the scarcity of comparative information and of health services research focusing on children’s services.

We conclude with a series of challenges for those responsible for the organization and delivery of health care for Europe’s children.

1. 1. How can health systems prepare for the “unknown unknowns” in meeting the health needs of children? There are still many questions about how to translate the explosion in knowledge of the molecular basis of disease, including genomics, proteomics, and metabolomics, into practical solutions that can be applied widely and at scale, and in ways that are affordable.

2. 2. Do stand-alone children’s hospitals have any future? Ageing societies and reduced demands for inpatient care of children, coupled with payment systems that often fail to cover the costs of paediatric care, suggest that most will struggle to survive, with the possible exception of some highly specialized facilities, such as those linked to academic health centres. The challenge facing those stand-alone children’s hospitals that are privately owned are especially great.

3. 3. The motto “sick child in and healthy child out” simplifies the current problems of child health care. Prior to and following a stay in hospital there must be well developed pathways for long-term care, involving a wide range of child health care providers in a variety of settings.

4. 4. How can models of care based on networks and integration across settings be delivered where there is choice of provider? Experience in Germany, for example, suggests that hospitals in such a setting have no incentive to develop initiatives designed to respond to the needs of chronically ill children in and outside hospitals (Reference BusseBusse, 2004).

The burden of stroke

Stroke is one of the leading causes of acute medical admissions to hospitals. It is among the most common causes of death and is a major cause of disability and poor health outcomes (Box 3.1). Worldwide, 17million people suffer a stroke each year and stroke is the third most common cause of death around the globe, accounting for 12% of all deaths, and exceeded only by heart disease and cancer (Reference FeiginFeigin et al., 2009; Reference ThriftThrift et al., 2014; GBD 2013 Mortality and Causes of Death Collaborators, 2015). While its management involves a series of specific responses by the hospital, the principles underlying them – including the importance of coordinated multispeciality and multiprofessional care, speed of response in the acute episode, the importance of prevention (of both the initial episode and any recurrence), and a model of care that follows the patient along the entire pathway, from the onset of illness to recovery and rehabilitation – apply equally to many other common medical conditions, such as acute myocardial infarction, gastrointestinal haemorrhage, or the acute and chronic complications of diabetes.

to 26 million (Reference FeiginFeigin et al., 2015). Essentially, changes in population demographics are outpacing improvements in stroke prevention, resulting in an increasing burden of stroke on populations and health systems, particularly in lower and middle income countries.

In addition to mortality, stroke causes a wide range of disabilities and impairments and has long-term implications for the health and well-being of survivors. These include neurological impairments such as muscle weakness or paralysis, impaired vision and impairments of speech and language skills. Up to 50% of patients will develop major depression in the years after stroke (Reference AyerbeAyerbe et al., 2013). Cognitive impairment is common and cerebrovascular disease is a major risk factor for dementia. More subtle cognitive problems, such as perceptual impairments, a change in personality, and profound fatigue are common, often lasting for years after the stroke (Reference WolfeWolfe et al., 2011). These problems are often referred to as “hidden deficits” but they account for a significant proportion of the suffering and costs that stroke causes. Effective risk reduction and high quality treatment should not only result in improvements in physical health but also reduce the future burden of dementia and mental health problems.

The financial costs of stroke are large and diverse: to the individual and their family in terms of health care and time off work; to governments in terms of medical and social care; and to wider society in terms of lost productivity. Other non-monetary costs are harder to calculate but are equally important – such as the emotional cost to family and friends of caring for a loved one who can no longer live independently.

Stroke accounts for between 2% and 4% of the total health care expenditure in developed countries. Moreover, stroke incurs substantial costs outside the health care system, reflecting survivors’ high rates of disability and dependence. In 2008 the total direct and indirect costs associated with stroke were approximately £8.9 (€9.7)billion per year in the United Kingdom (Reference SakaSaka et al., 2009). Most costs are incurred in the initial months and years after the patient has been discharged from hospital (Reference SakaSaka et al., 2009). Studies from Italy (Reference BottacchiBottachi et al., 2012), Denmark (Reference JennumJennum et al., 2015) and France (Reference SchmidtSchmidt et al., 2015) have produced similar estimates of the costs of stroke in Europe, at €7000–20000 per stroke. Almost any intervention that reduces the incidence of stroke or reduces the likelihood of long-term disability will be cost-effective in countries with expensive health and social care systems.

Age-adjusted incidence and mortality rates for stroke have fallen significantly over recent decades, thought to be due to improvements in stroke prevention through improved management of risk factors for stroke, especially hypertension and tobacco control, and, in some places, improved acute care. Between 1990 and 2013 the age-adjusted mortality rate for stroke in developed countries fell from 113 to 67 per 100000 (Reference FeiginFeigin et al., 2015). However, because of increasing longevity and the strong association between stroke risk and age, the absolute numbers of people having stroke are rising year on year, from an estimated 4.3 million globally in 1990 to 6.9million by 2013 (Reference FeiginFeigin et al., 2015). This is leading to increasing numbers of people dying from stroke (2.1 million in 1990 to 3.3million deaths in 2013 from ischaemic stroke), increasing disability adjusted life years and an almost doubling in the prevalence of stroke between 1990 and 2013, from 14million

Evidence-based stroke care

Historically, stroke was considered a condition for which little could be done, but there is now an extensive evidence base for interventions that are effective in improving outcomes after stroke: reducing disability, improving survival and reducing the risk of stroke recurrence. Some of these interventions (such as stroke unit based care) are applicable to almost all patients with stroke, while others are limited to selected patient groups (Figure 3.1).

The stroke care pathway

Hospitals are central to stroke care but exist as components of a pathway of care that spans pre-hospital emergency medical services, acute hospital care, rehabilitation and primary care (Figure 3.2). For many of the elements of the patient pathway, there is now good quality evidence about how to organize health services to optimize patient outcomes. At the same time, we also know that in the real world there are wide variations both across Europe and within individual health economies in how stroke care is delivered.

Figure 3.2 An example of a typical stroke care pathway in high income settings

Source: Authors’ own

Workforce

Optimal stroke care is highly multidisciplinary, with a core stroke service requiring specialist doctors, nurses, physiotherapists, occupational therapists, speech and language therapists, dieticians and psychologists. Coordinating the work of the team is essential and formal MDT working (such as regular MDT meetings to discuss individual cases) is one of the components of stroke unit care (Reference Langhorne and PollockLanghorne, Pollock & Stroke Unit Triallists Collaboration, 2002).

Stroke medicine has traditionally not existed as a medical speciality in its own right, and as a result there is variation between countries in the specialty background of the lead physician. In most countries acute stroke care is largely provided by neurologists, but in some countries (such as the United Kingdom) stroke care is mainly led by stroke specialist physicians with a background in geriatric medicine.

Other medical specialties with important roles in the stroke pathway include neuroradiology (both diagnostic and interventional), neurosurgery, vascular surgery, intensive care, emergency medicine, rehabilitation medicine, and primary care.

Nursing care is an essential aspect of acute stroke care and it is likely that good quality nursing is one of the key mechanisms for the beneficial effect of stroke units (Reference Middleton, Grimley and AlexandrovMiddleton, Grimley & Alexandrov, 2015). In addition to general nursing skills, nurses need specific skills and knowledge in managing patients with stroke, such as screening and managing dysphagia, the positioning and mobilization of patients with muscle weakness or paralysis, prevention of pressure sores, and communicating with patients with language impairment after stroke (aphasia). Because many patients with stroke die as inpatients, nurses also need skills in providing end of life and palliative care. In some countries (such as the United Kingdom) nurses have taken on extended roles in prescribing, diagnostics, and assessing patients for thrombolysis.

In addition to the general evidence concerning nurse staffing levels and patient outcome (Reference NeedlemanNeedleman et al., 2011), there is specific evidence in stroke care that nursing-to-patient staffing ratios are associated with patient outcomes, with higher mortality rates for patients admitted at weekends to units with lower numbers of trained nursing staff (Reference BrayBray et al., 2014).

Rehabilitation is typically carried out by physiotherapists, occupational therapists, and speech and language therapists (speech pathologists). This includes carrying out assessments of the extent of a patient’s impairments and the impact of these on functioning, and planning treatment goals. Describing the full range of assessments and therapies provided by stroke therapists is beyond the scope of this chapter, but a wide range of methods may be used, from relatively simple mobilization techniques to more sophisticated interventions requiring the use of specialized equipment and aids. Therapists may also carry out additional diagnostic tests requiring additional skills and equipment. Therapists are central in planning patients’ discharge from hospital and implementing adaptations or the installation of equipment in patients’ homes, and have a key role in communicating with and providing psychological support for patients and their families and carers.

Stroke services also involve a variety of other allied health professionals. Dietetics is a core component of an acute stroke service, since many patients require nutritional support or assisted feeding. Problems with cognition, memory, mood or executive functioning are common after stroke and access to a clinical psychologist enables more detailed neuropsychological assessments to be carried out and appropriate information, support and therapy to be provided. Some patients with persistent physical or visual impairments may also require the provision of support aids from prosthetics and orthoptics specialists. As most patients will be discharged home on new or changed medications, pharmacists have an important role in ensuring safe prescribing, medicines reconciliation and in providing information to patients and family members about medications and side effects.

Networks of stroke care

In parallel with the development of organized stroke care in individual hospitals, many health systems have developed regional and network models of stroke care. In much of Europe and the USA a distinction is made between primary stroke centres and comprehensive stroke centres. Primary stroke centres are those with the necessary staffing, infrastructure and expertise to provide treatment for most stroke patients, but which may not have the capability to manage patients with more complex problems. Comprehensive stroke centres provide the same core stroke service but also the high technology and resource-intensive elements of care, such as interventional neuroradiology or neurosurgery, and play a greater role as centres for research and education. The European Stroke Organisation has produced guidelines setting out in detail the facilities and staffing required by comprehensive stroke centres (“ESO Stroke Centre”) in Europe (Ringelstein et al., 2013), which includes 24/7 provision of advanced imaging and interventional neuroradiology. In many countries these levels of care are formally accredited through certification schemes (for example, in the USA and Germany) or through quality registers (for example, in the United Kingdom and Sweden). There is evidence from the USA (Reference XianXian et al., 2011), Japan (Reference IiharaIihara et al., 2014), Finland (Reference MeretojaMeretoja et al., 2013) and the United Kingdom (Reference BrayBray et al., 2013a) that hospitals with higher levels of organized stroke care provide better outcomes for patients, suggesting that formal mechanisms to ensure stroke quality standards are important.

Networks of hospitals are frequently used in stroke care to provide access to the higher technology care offered in comprehensive stroke centres. These may act as the central referral centre for “hub and spoke” networks of hospitals, taking referrals from a number of primary stroke centres. Such networks have become increasingly important with the advent of more sophisticated diagnostic and interventional innovations, such as advanced brain imaging and thrombectomy, which would not be feasible or cost-effective to provide in smaller hospitals. In the United Kingdom the concept of the comprehensive stroke centre and primary stroke centre is more frequently defined in terms of hyperacute stroke units (HASUs) (providing acute care for the first 72 hours after stroke) and stroke units (for post-72 hour care).

There is evidence that these types of network can lead to better patient outcomes. In 2010 health care providers in London carried out a major reorganization of stroke services, reducing the number of acute admitting hospitals from 28 to 8 centres, each serving a population of approximately 1–1.5 million people. These eight hospitals were designated as HASUs and formal pre-hospital protocols were established so that all patients with suspected stroke would be transferred to a HASU. These HASUs provide acute care for up to 72 hours, and patients requiring ongoing inpatient treatment and rehabilitation are then transferred to a stroke unit closer to their home. The network is supported by agreed protocols for patient transfers, minimum standards for training, facilities and staffing, a common framework for payment and reimbursement from funders, and regular audit of quality and performance. Since these changes were established, there have been large improvements in the quality of stroke care in London, with stroke case fatality rates falling faster in London than in other urban areas in England (Reference MorrisMorris et al., 2014). One of the key aspects of stroke care in London that is different from many other “hub and spoke” models of care is the concept of providing higher level acute care to all patients and not just to selected patients; the majority of patients therefore have the opportunity to benefit from early intensive acute stroke care in an HASU.

Some models of care have emerged to help tackle the issue of providing specialist stroke care at scale by providing regional systems for transferring patients to specialist centres or providing specialist input remotely. Telemedicine is widely used in stroke care and many areas have implemented telemedicine systems to transmit video, audio and imaging data so that stroke specialists at home or working in another hospital can help in assessing patients presenting with acute stroke (Reference Hess and AudebertHess & Audebert, 2013). This has particular uses in delivering thrombolysis in rural areas where it may not be feasible to provide specialist stroke services in areas of low population density.

Telemedicine models may also be augmented by pathways that provide initial triage and assessment of patients in local hospitals, initiate thrombolysis if appropriate, and then transfer the patient to a hospital with specialist stroke care provision. These “drip and ship” models have been used particularly in the USA, where one in four patients treated with thrombolysis is now managed this way (Reference ShethSheth et al., 2015).

Variation in quality

Within Europe there is wide variation in the organization of stroke services and in the use of policies aimed at increasing care quality, such as clinical audit, financial incentives, clinical guidelines, accreditation and regulations (Reference Di CarloDi Carlo et al., 2015). The quality of care delivery across Europe is hard to measure consistently, since even when data are available, differences in the choice and definition of quality indicators make comparisons difficult (Reference WiedmannWiedmann et al., 2012). Nonetheless, wide variation exists even for aspects of stroke care with the strongest evidence base and most consistent inclusion in guidelines and audits, such as admission to a stroke unit or treatment with thrombolysis (Reference AyisAyis et al., 2013). For example, in 2011 only 33% of stroke patients in France were admitted to a stroke unit (Reference SchmidtSchmidt et al., 2015), compared with 62% in Scotland (Reference TurnerTurner et al., 2016). A survey of 25 European countries in 2005 found evidence of extremely wide variation in the provision of acute stroke care, with particularly poor provision of stroke unit care in Estonia, France, Greece and Portugal (Reference LeysLeys et al., 2007). Only 49% of the 886 hospitals included in the survey provided the minimum level of care to be considered a primary or comprehensive stroke centre. Stroke outcomes also vary significantly across Europe. For example, one comparative study of stroke outcomes between six European cities (in France, Italy, Lithuania, the United Kingdom, Spain and Poland) found three-fold variation in the risk of death after stroke (Reference HeuschmannHeuschmann et al., 2011).

Poor provision of acute stroke care occurs even in higher income European countries. For example, a survey of neurology services in Italian hospitals found that only 28% provided stroke unit based care, and large numbers of patients with stroke were admitted to hospitals without stroke units (Reference de Falco, Leone and Beghide Falco, Leone & Beghi, 2009). Organized stroke care was also relatively slow to develop in France, with only two hospitals out of 121 surveyed in 2005 providing stroke unit care (Reference LeysLeys et al., 2009). Policy-makers in France have subsequently prioritized stroke care and developed a national strategy for improvements, with a particular focus on developing stroke care networks (Reference LebrunLebrun et al., 2011).

Information on stroke care quality is collected systematically in some European countries (Reference WiedmannWiedmann et al., 2012), but most countries in Europe lack or have only fragmentary systems of data collection for quality improvement (Reference Di CarloDi Carlo et al., 2015). Where data are available, there is evidence of widespread variation in care quality within countries, not just between countries. For example, stroke care quality is measured in England and Wales by the Sentinel Stroke National Audit Programme (SSNAP) (Sentinel Stroke National Audit Programme, 2018) and there are wide geographical variations in a variety of care quality indicators (Figure 3.3). National clinical audits and registries in other countries show similar variation in stroke care quality, including Scotland (Scottish Stroke Care Audit; SSCA), Sweden (RiksStroke) and Germany (Reference WiedmannWiedmann et al., 2014). Some of these variations reflect broader geographical inequalities in the provision of health care services, such as the relative under-provision of stroke units in southern Italy compared to northern Italy (Reference GuidettiGuidetti et al., 2013).

Figure 3.3 Geographical variation in admission to a stroke unit within four hours of admission in England and Wales

Source: January–March 2015, SSNAP

Specialist resources

The main essential component of a stroke service is a stroke unit (Figure 3.4), and stroke unit beds should be available 24 hours a day for new admissions. Stroke units are more defined by staffing than by physical infrastructure, but stroke units do have a few specialist environmental and equipment considerations. Acute stroke units need to have the equipment to provide continuous (or regular) physiological monitoring. There is evidence that care bundles of nursing interventions that focus on physiological monitoring and detecting complications are effective in improving outcomes after stroke (Reference Middleton, Grimley and AlexandrovMiddleton, Grimley & Alexandrov, 2015). Appropriate facilities and space need to be available to mobilize patients and provide rehabilitation. This might include a gym for physiotherapy and areas (such as a therapy kitchen) for occupational therapy assessments.

Brain imaging is the core diagnostic requirement of a stroke service. CT imaging needs to be available 24 hours a day for the assessment of new patients and in carrying out imaging on patients who develop neurological deterioration after stroke. Although non-contrast CT imaging is adequate for most acute treatment decisions, increasing use is being made of more advanced CT imaging modalities (CT angiography and perfusion) and MRI.

A small proportion (less than 5%) of patients will require neurosurgical intervention (Reference VahediVahedi et al., 2007). Managing these patients requires access to neurosurgical infrastructure (theatres, specialist surgical, anaesthetic and nurse staffing, critical care facilities) either on site or after transfer to a referral centre. Similarly, some patients with stroke or TIA require vascular surgery for carotid endarterectomy. Patients with strokes that result in reduced consciousness may need to be managed in an intensive care unit as part of their admission. As thrombectomy services become more widely available, stroke care in high income countries will increasingly require access to neurointerventional facilities and the staffing required to provide them for patients suitable for this treatment.

Vascular ultrasound and echocardiography are also recommended as part of the diagnostic work-up for many patients (European Stroke Organisation Guidelines). All of these investigations require appropriate equipment and staff skilled in carrying out and interpreting these tests.

The requirements from stroke services of laboratory and pathology services are limited largely to common blood tests and in the diagnostic work-up of rarer causes of stroke. POCT is widely used in the emergency room for patients being assessed for thrombolysis, where rapid results are important in achieving fast door to needle times (Reference RizosRizos et al., 2009).

Stroke is not an area with a high use of specialist pharmaceuticals. The main pharmaceuticals that are required for an acute stroke service are alteplase (the only agent licensed for stroke thrombolysis in Europe) and secondary prevention agents (anticoagulants, antiplatelets, statins, anti-hypertensives).

Barriers to delivering optimal care

Training sufficient numbers of specialist staff has been a challenge in many countries. In the United Kingdom, for example, despite training pathways for physicians developing a specialty interest in stroke and the existence of stroke-specific professional organizations to support trainees and specialists, there is a shortage of physicians specialized in stroke medicine, with 25% of consultant posts remaining unfilled (Sentinel Stroke National Audit Programme, 2018). The reasons for this are unclear but might include the increasing requirement for out-of-office-hours working as stroke care has become higher in intensity. There are also fewer options for private practice for stroke specialist physicians than many other procedure-based or office-based specialties, which may affect its perceived attractiveness as a specialty. Lack of staffing resources, particularly of therapists and nursing home staff, was also identified as being one of the main barriers to improving stroke care in France (Reference GacheGache et al., 2014). There is potential for tackling staff shortages by expanding the roles and skills of existing clinical staff, such as empowering nurses to manage thrombolysis calls and take on leadership roles in stroke services.

One of the key barriers to providing optimum care has been the difficulty of closing the gap between evidence and widespread implementation into practice. Here the barriers are not merely lack of financial or other resources, but also contextual and behavioural factors such as culture, organization and leadership. Indeed, implementation gaps in stroke care involve not only the high technology and resource-intensive elements of stroke care, but also the key evidence-based components of care (such as stroke units and secondary prevention): even “getting the basics right” can be difficult. For example, even 20 years after the publication of the first trial to demonstrate the effectiveness of thrombolysis for ischaemic stroke, rates of use of thrombolysis vary widely even in highly developed health economies. In particular, the uptake of thrombolysis was initially very poor in the United Kingdom: when the National Audit Office reported on the quality of stroke care in England in 2005 it found that fewer than 1% of stroke patients were receiving thrombolysis. By contrast, during the same period 3–4% of stroke patients were treated with thrombolysis in Sweden (Reference ErikssonEriksson et al., 2010). The low rate of implementation in the United Kingdom occurred in the context of underdeveloped stroke services and highly variable care between centres, with only 60% of stroke patients being cared for in a stroke unit and many patients waiting more than two days for a brain scan (National Audit Office, 2005). This report prompted the development of a national improvement strategy, financial investment in stroke care, an expansion in training for stroke specialists and new resources allocated to quality improvement and audit. National clinical audits have since demonstrated significant improvements in the quality of stroke care in England and an acceleration in the uptake of thrombolysis, with 11–12% of patients (of all ages) now treated with thrombolysis: rates that are comparable with other high performing health systems in Europe (Sentinel Stroke National Audit Programme, 2018).

Although stroke care has been transformed by evidence-based medicine, there are still many areas of stroke care with little evidence to guide practice. One of the reasons for this may be relative underfunding of stroke research: in the United Kingdom for every £10 of health and social care costs attributable to stroke, it received only £0.19 in funding, compared to £1.08 for cancer and £0.65 for coronary heart disease (Reference Luengo-Fernandez, Leal and GrayLuengo-Fernandez, Leal & Gray, 2015). The areas of stroke care with the poorest evidence base are generally the less acute components of care, such as therapy and rehabilitation. Even fundamental questions about rehabilitation, such as when physiotherapy should commence after stroke, and at what intensity, are only now being addressed in randomized controlled trials (AVERT Trial Collaboration Group et al., 2015). Lack of evidence makes it difficult to define what optimal care in these areas should be, contributing to variations in practice. For example, there are wide variations across Europe in the amount of therapy provided to patients after stroke, which are not explained by differences in patient characteristics and likely reflect variation in access and availability (Reference WolfeWolfe et al., 2004; Reference WellwoodWellwood et al., 2009).

One of the biggest challenges for stroke medicine in high income countries in the next few years will be in implementing access to thrombectomy. Current provision is largely concentrated in relatively small numbers of specialist hospitals, and even in these hospitals there may not be round-the-clock access. The main barrier to implementation is insufficient numbers of trained neurointerventionists; increasing capacity will take time and there are likely to be resource challenges in maintaining a 24/7 acute thrombectomy service that may only be used relatively infrequently, with only a minority of acute stroke patients being appropriate for this treatment. Another risk is that a focus on developing thrombectomy services will distract attention and resources away from the wider challenge of implementing good quality stroke unit based care and post-stroke rehabilitation.

The future

The challenge for the future involves the twin tasks of implementing an ever-growing evidence base on new interventions and innovations and in improving the availability and quality of the elements of stroke care that we already know to work. As has already been described, wide variations in care quality exist both across and within European countries and these will not be reduced if the focus of clinicians, funders and managers is solely on implementing the “new”. Indeed, it is worth emphasizing that from a global perspective most people with stroke do not even receive the most core elements of stroke care such as stroke unit based care. By far the greatest reduction in the future burden of stroke on populations will come about not through new technologies but as a result of public health efforts to reduce stroke incidence through tobacco control, public health programmes to reduce cardiovascular risk factors (such as hypertension, obesity, alcohol and physical inactivity), increasing access to stroke unit based care and rehabilitation, and effective use of secondary prevention.

There are also examples of interventions that are still in use, despite evidence of ineffectiveness or even harm. One of the most prevalent of these is the use of antiplatelet agents in patients with AF. Historically, antiplatelet agents such as aspirin were often used as an alternative to anticoagulants to reduce the risk of stroke in people with AF (particularly in older people), but it is now known that antiplatelets provide much less benefit and are no safer than oral anticoagulants (Reference Aguilar, Hart and PearceAguilar, Hart & Pearce, 2007). Current guidelines therefore recommend that antiplatelet agents are not used for stroke prophylaxis in AF. However, many patients with AF are still prescribed antiplatelets, and oral anticoagulants remain underused. In England, for example, 31% of eligible patients known to be in AF in primary care were not prescribed an oral anticoagulant in 2013/2014 (NHS Quality and Outcome Framework, 2015), resulting in many thousands of avoidable strokes per year. Newer oral anticoagulants have become available in recent years that offer similar reductions in stroke risk but may have reduced risks of major complications than treatment with warfarin (Reference Gómez-OutesGómez-Outes et al., 2013).

As already discussed, the innovation most likely to change stroke care in the next five years in high income countries is thrombectomy for ischaemic stroke. The challenges of implementing this at scale, though, are significant and it is not certain how quickly this will become widely available experience from thrombolysis suggests that it is likely to be slow and highly variable between settings. There are other emerging areas of research that are still at early stages but may lead to significant impacts in the future. One of the most intriguing ideas is of reducing delays in thrombolysis by installing brain CT scanners in ambulances, allowing pre-hospital diagnosis of stroke type and administration of thrombolysis if appropriate. The concept has been demonstrated in a small number of centres (Reference WalterWalter et al., 2012; Reference ParkerParker et al., 2015), and although the real-world feasibility and cost-effectiveness of this model of care remain unproven, using new diagnostic technologies to facilitate pre-hospital stroke diagnosis could transform stroke care pathways. Imaging is an area of fast-moving innovation and development – for example, it is now possible to non-invasively image areas of unstable atherosclerotic plaque that are the source of the majority of strokes, and identify at an early stage the patients at highest risk of new or recurrent stroke (Reference Tarkin, Joshi and RuddTarkin, Joshi & Rudd, 2014). Further off, there is the prospect that stem cell technologies may allow the repair of established brain damage occurring as a result of stroke; early-stage clinical trials in stroke patients are already ongoing (Reference BanerjeeBanerjee et al., 2014). Rehabilitation is also increasingly making use of new advances in robotics to provide therapy and augment motor functioning in patients with limb paralysis after stroke (Reference BurgarBurgar et al., 2000).

Although exciting, most of these innovations are likely to be applicable only to a minority of stroke patients. The implementation of these new resource-intensive interventions therefore needs to be linked to efforts to develop models of delivery that can provide these in the most clinically and cost-effective way: for many aspects of acute stroke care this is likely to mean further development of networks of care and centralization of specialist services into hub hospitals.

Perhaps of greater medium-term significance to population health will be innovations that are applicable to all patients with stroke: the shift towards increased engagement of patients in managing their own health through shared decision-making and self-management, and in the increasingly sophisticated use of data to support research, quality improvement and new models of care. For example, there is good evidence that helping patients to manage their own blood pressure leads to better blood pressure control than the typical model of clinic-based management (Reference McManusMcManus et al., 2014); it is likely that health care services will increasingly take the role of supporting stroke survivors (and their carers) in managing stroke as a long-term condition. Similarly, health care in the future will make much more sophisticated use of real-world data such as electronic health records and clinical registries (Reference KrumholzKrumholz, 2014). For example, use of such data to generate more accurate predictions of prognosis, or to generate patient-specific estimates of the harms and benefits of interventions, can help in making better decisions about treatment and support patients in shared decision-making (Reference SpertusSpertus et al., 2015).

Stroke care in the hospital of the mid-21st century

Stroke care has changed dramatically over recent decades, driven by the development of organized multidisciplinary care and an increasing emphasis on acute intervention. The dependency on advanced medical imaging, resource-intensive multidisciplinary care and acute treatments that can only feasibly be administered in large hospitals means than hospitals are likely to remain the cornerstone of acute stroke care with most patients being admitted for inpatient care. The hospital of the future, if it is to provide comprehensive care for patients with stroke, will therefore need to be organized and designed to deliver:

• round-the-clock access to advanced imaging, diagnostics and neurointervention facilities that are geographically located within the hospital to optimize speed of access;

• stroke units to which patients with acute stroke are admitted without delay and which are the setting for multidisciplinary stroke specialist care;

• the appropriate environment and equipment to enable optimal provision of therapy and to support rehabilitation and recovery; and

• organized pathways of care that reduce treatment delays and support the provision of good quality therapy not just in hospital but also in the community.

In many places this means that some acute hospitals should no longer attempt to treat stroke. Rather, there is a need to find alternative models of care whereby those suffering a stroke will be taken, at least for definitive treatment, to a hospital that can provide a comprehensive care package, including rapid diagnosis and intervention where required. This will often not be the nearest facility. This could have profound implications for the organization of hospitals in a defined area, especially where they have had a high degree of autonomy. It will often be extremely challenging, politically and legally, to tackle this and each solution must be tailored to the particular context.

The critical component of stroke care services will remain not physical assets and medical devices but the MDTs of people that are the core of organized stroke unit care. Maintaining and developing this resource will require long-term investment in the training of the stroke workforce (medical, nursing and allied health professions). Providing ongoing education and training will be of increasing importance in helping clinicians keep up to date with the accelerating pace of new medical knowledge and evidence.

It will be disappointing if the next few decades do not see the development of new, high-impact drugs and devices that improve recovery after stroke, reduce complications, or help survivors manage the long-term consequences of stroke. The development of therapies that facilitate brain repair (for example, through stem cells) could be a real paradigm shift, but the brain is vastly complex and still contains many mysteries; progress in the development of new “brain regeneration” therapies is hard to predict. For patients with permanent impairments after stroke, assistive technologies (such as robotics) are likely to become much more mainstream and sophisticated, and allow more stroke survivors to live independent lives. The challenge for the future will be providing these innovations at scale in a cost-effective way and in speeding up the diffusion of new evidence into widespread clinical practice.

The evidence of current variation in care quality and outcome points to the importance of prioritizing and developing quality improvement in stroke care. This includes supporting and developing current systems of clinical audit (SSNAP, SSCA, Riks-Stroke, Danish Stroke Register) and increasing the capacity of health care systems to deliver continuous quality improvement. As the sophistication and scope of health care data collection increase, this is likely to lead to a growing emphasis on the development of new ways of using data in stroke care as part of clinical care, research and quality improvement. It is hard to foresee in much detail what this new, data-aware world of health care will look like in practice, but it may have a transformative effect on the delivery and organization of stroke care in the next few decades.

Introduction

The challenge of frailty

Frailty is defined as a state of increased vulnerability and a disturbance in homoeostasis where a stressor event can lead to dramatic changes to the health status of an individual, which result in increased dependency levels, mobility problems, a change in cognition, such as delirium, and marked levels of functional decline (Reference CleggClegg et al., 2013) (Figure 4.1; Box 4.1). Frailty is also associated with increased mortality and morbidity, and it is a strong predictor of care home utilization and death (Reference CesariClegg et al., 2016). There are two common models for defining frailty as a clinical entity and these are increasingly important as ways of segmenting and addressing the needs of hospital patients (Reference OliverOliver, 2016c). These rest on an identifiable “frailty phenotype” (Fried model) based on the presence of three or more characteristics or a “frailty index” (Reference Rockwood and MitnitskiRockwood & Mitnitski, 2011; Reference CesariClegg et al., 2016) based on an accumulation of deficits. There is an overlap between frailty, multiple co-morbidity and age-related disability (World Health Organization, 2015; National Institute for Health and Care Excellence, 2016), although it is now possible to identify people with frailty in community settings using existing primary care data (Reference CleggClegg et al., 2016) (Table 4.1), at the hospital emergency front door or on the inpatient wards, where simple pragmatic case-finding tools are often employed (Royal College of Physicians, 2013; British Geriatrics Society, 2014a; Health Improvement Scotland, 2015).

Figure 4.1 Vulnerability of frail older people to a sudden change in health status following a minor illness

Note: The top line represents a fit older person who, following a minor stress such as a urinary tract infection, experiences a relatively small deterioration in function and then returns to homoeostasis. The lower line represents a frail older person who, following a similar stress, experiences a larger deterioration which may manifest as functional dependency and who does not return to baseline homoeostasis.

Source: Reference CleggClegg et al., 2013

Box 4.1Common presentations of frail older people

Frailty syndromes (how people with frailty present to services)

• “Non-specific” – e.g. fatigue, weight loss, recurrent infection

• Falls/collapse

• Immobility/worsening mobility

• Delirium (“acute confusion”)

• Incontinence (new or worsening)

• Fluctuating disability

• Increased susceptibility to medication side effects – e.g hypotension, delirium

Table 4.1 Adjusted 1, 3 and 5 year hazard ratios for outcomes of mortality, unplanned hospitalization and nursing home admission for older people with mild, moderate and severe frailty

Outcome	Mild frailty (HR, 95% CI)	Moderate frailty (HR, 95% CI)	Severe frailty (HR, 95% CI)
1 year mortality	1.92 (1.81–2.04)	3.10 (2.91–3.31)	4.52 (4.16–4.91)
3 year mortality	1.77 (1.71–1.83)	2.78 (2.68–2.89)	3.99 (3.79–4.20)
5 year mortality	1.72 (1.68–1.77)	2.64 (2.57–2.72)	3.83 (3.68–3.99)
1 year unplanned hospitalization	1.93 (1.86–2.01)	3.04 (2.90–3.19)	4.73 (4.43–5.06)
3 year unplanned hospitalization	1.78 (1.74–1.82)	2.63 (2.55–2.71)	3.76 (3.60–3.94)
5 year unplanned hospitalization	1.71 (1.68–1.74)	2.50 (2.44–2.56)	3.43 (3.31–3.58)
1 year nursing home admission	1.89 (1.63–2.15)	3.19 (2.73–3.73)	4.76 (3.92–5.77)
3 year nursing home admission	1.67 (1.56–1.80)	2.60 (2.40–2.82)	3.55 (3.19–3.96)
5 year nursing home admission	1.59 (1.51–1.67)	2.30 (2.18–2.44)	3.12 (2.88–3.38)

Note: For all outcomes the comparator is fit older people. All data adjusted for age and sex. NB: Hospitalization outcome for external validation cohort includes only those practices (n = 158) with Hospital Episode Statistics (HES) linked data. CI: confidence interval; HR: hazard ratio.

Source: Reference CleggClegg et al., 2016

Adequate assessments and interventions for frailty are important. Survival plots using primary care data in England suggest that those with severe frailty are at higher risk of dying by a factor of five (Reference BatesBates et al., 2014). A ten-year prospective cohort study involving community-dwelling older people identified frailty to be the leading cause of death, accounting for 28% of deaths compared to organ failure (21%), cancer (19%), dementia (14%) and other causes (15%) (Reference CleggClegg et al., 2013).

Falls are a common reason for admission to hospital and have come to the attention of policy-makers and payers. Frailty is known to be an independent predictor of falls, and figures over the last five years show that Ireland had spent an estimated €520 million on falls, while in the Netherlands fractures were estimated to have led to 80% of fall-related costs, amounting to approximately €540 million between 2007 and 2009. In England alone, falls in older people have been estimated to cost the National Health Service £2 billion annually (Reference FentonFenton, 2014). Across Europe and other high income countries, the estimated costs of falls to health care services are significant.

Models of pre-hospital care

Models of hospital care

Across Europe frail older people account for approximately 20% of total attendance to emergency departments (Reference SonaSona et al., 2012). The majority of people over 50 years old attending emergency departments have multiple long-term conditions (Quality Watch, 2015). One important response is hospital care based on comprehensive geriatric assessment as the underpinning tenet of assessment and management. The models described in this section can be found in different European countries, although we also consider successful models from other developed health care systems such as the United States.

Models of post-hospital care

Transitional care arrangements that constitute post-hospital care can put pressures on frail older people, and need to be timely and safe to ensure effective and efficient transfers (Reference AllenAllen et al., 2014). Across high income countries various models of post-hospital care are emerging to bridge the gap between hospital and people’s homes, with core elements including anticipatory care targeting older people, MDTs, and enhanced interagency working to promote improved outcomes (Reference PhilpPhilp et al., 2013). These services aim to allow people to leave hospital sooner, reduce the chance of readmission and improve their short- and medium-term health outcomes. This section focuses on a range of models that have been implemented across European countries and describes discharge-to-assess and early discharge approaches, while also considering the role of community geriatricians and of primary care in promoting and supporting post-hospital care in the community. It is sometimes the same teams or referral hubs providing pre-hospital or “step up” care and admission prevention (see Section 2) that are able to provide this transitional or “step down” care and such an arrangement allows for simplicity and continuity of care.

Workforce planning in caring for frail older adults

One of the key workforce challenges in the care of frail older adults is a shortage of medical and nursing staff within geriatric care (Reference Kolb, Topinkova and MichelKolb, Topinkova & Michel, 2011; Reference HeinenHeinen et al., 2013). In the United Kingdom geriatrics is the largest internal medicine speciality with the highest number of training posts. But demand for both geriatric medicine posts and acute internal medicine posts is so high that not all posts are filled currently (Royal College of Physicians of London, 2015). Guidance from the Royal College of Physicians recommends a minimum of one consultant geriatrician per 50 000 population for effective facilitation of geriatric care (Reference FisherFisher et al., 2014). France, Spain and Ireland have a lower number of geriatricians per capita compared to Belgium, Germany and Switzerland, with vast differences in recruitment and structured training programmes (Reference Kolb, Topinkova and MichelKolb, Topinkova & Michel, 2011).

With shortages of geriatrics specialist doctors, nurses and allied health professionals, those in other adult clinical areas all commonly encounter older patients with complex co-morbidities, dementia and frailty as a big part of their core role (British Geriatrics Society, 2014a; Reference Oliver, Foot and HumphriesOliver, Foot & Humphries, 2014; Quality Watch, 2015). Non-geriatric trained health care professionals do not always have the competence or confidence to manage frail older people (Alzheimer’s Society, 2009). Unfortunately, ageist attitudes persist in parts of the workforce, leading to age discriminatory treatment and service models (Centre for Policy on Ageing, 2009; Economist Intelligence Unit, 2012; British Geriatrics Society, 2014b; World Health Organization, 2015; National Institute for Health and Care Excellence, 2016).

Surveys from North America and Europe have shown that there are shortcomings in the undergraduate curriculum of geriatric medicine for doctors in training, and as a result there are initiatives in place to ensure that resources are allocated towards specialist teaching around geriatric medicine, focusing on attitudes towards older patients, and trying to engage these patients in teaching to enable a broader view of managing frail older patients in practice (Reference OakleyOakley et al., 2014). There are now toolkits available that define core requirements for postgraduate training across Europe in geriatric medicine that can help inform a structured curriculum at the European Union level (Reference SinglerSingler et al., 2016).

Nursing staff shortages and issues such as attitudes to older people and the lack of training to work with them are also significant problems (Reference CapezutiCapezuti et al., 2012; Reference HeinenHeinen et al., 2013). Reference CapezutiCapezuti et al. (2012) found that geriatric-specific nurse training can contribute to successful recruitment of nurses and provide the high level nursing input required for geriatric patients. Staff development in specialist areas such as dementia is needed to improve their knowledge and competence (Reference Page and HopePage & Hope, 2013; Reference Hermann, Muck and NehenHermann, Muck & Nehen, 2015). NHS Education for Scotland in partnership with the Scottish Social Services Council developed a framework for all health and social services staff working with people with dementia, their families and carers in 2011, with four levels of training depending on the amount of contact staff had with the patients (Reference BanksBanks et al., 2014).

Advanced nurse practitioners (ANPs) may carry out CGAs and provide advice about acute care, including managing mental health illnesses, as well as playing a part in rehabilitative medicine and supporting clinical governance, education and innovation (Reference GoldbergGoldberg et al., 2016). A systematic review of the role of ANPs in long-term residential care concluded that they play a positive role in reducing mental health illnesses, improving urinary continence and pressure ulcer care, improving residents’ abilities to meet personal goals and in family satisfaction with medical services (Reference DonaldDonald et al., 2013).

Geriatricians are unable to look after all patients with frailty and, with an ageing population, frail older people are seen in all specialties such as surgery, general medicine, and mental health (Reference BagnallBagnall et al., 2013; Reference Oliver, Foot and HumphriesOliver, Foot & Humphries, 2014). European countries clearly need an increase in the specialist geriatric medicine workforce as increasingly the core business of acute internal medicine, emergency medicine and general internal medicine is geriatric medicine (Reference CesariCesari et al., 2016). At the same time, there will never be enough geriatricians or specialist nurses and allied health professionals to look after all older people with frailty and so other specialists will need greater competencies (Reference Oliver and BurnsOliver & Burns, 2016). This has been recognized in plans for European training curriculums by the European Federation of Internal Medicine (2016 and ongoing).

The challenges facing geriatric medicine call for a new way of collaborative and integrated working across disciplines, and key elements to inform this should include: definition of roles of those managing the patient, goal setting with the patient, team communication between geriatricians and the treating team, care planning with relevant guidelines in place, and leadership to oversee that the overall care is safe, effective and deliverable (Reference TsakitzidisTsakitzidis et al., 2016). The National Institute for Health and Care Excellence guidelines on managing patients with multimorbidity has set out similar messages (Reference FarmerFarmer et al., 2016).

Barriers to delivering optimal and integrated hospital and acute care

The quality of geriatric care depends on available resources, structures and a specialized workforce to deliver acute care, rehabilitation, long-term care and palliative care services; however, countries across Europe vary in terms of how well established their geriatric systems are, with some countries having more developed services compared to others (Reference Kolb, Topinkova and MichelKolb, Topinkova & Michel, 2011; EUGMS, 2016). But all doctors, nurses and allied health professionals working in acute internal medical and surgical specialties will care for older people with frailty (Reference Oliver, Foot and HumphriesOliver, Foot & Humphries, 2014; Reference Oliver and BurnsOliver & Burns, 2016). Geriatric training curriculums need to change and evolve to reflect the complexities that surround frail older people and the European Union Geriatric Medicine Society (EUGMS) has now set plans in place to develop a curriculum for “geriatric emergency medicine” for this specific purpose (Reference Bellou and ConroyBellou & Conroy, 2016).

Care for older people is still very much divided into primary care, secondary care and social care, often with a lack of continuity throughout the process of an older person’s journey as they transition through any of these systems (Reference Oliver, Foot and HumphriesOliver, Foot & Humphries, 2014). One restructuring process that distributed funding and developed an integrated model of health care provision in New Zealand transformed the way older people were cared for, which subsequently improved waiting times, reduced unplanned readmissions and increased the availability of social care to the older population through their “one budget, one system” philosophy (Reference Timmins and HamTimmins & Ham, 2013). The province of Quebec in Canada has also been successful in integrating health and social care through structural organizations, contractual agreements, and the sharing of informatics between these systems of care (Reference VedelVedel et al., 2011).

Improved information systems will be increasingly important but a systematic review (Reference LluchLluch, 2011) demonstrated that health information technologies are difficult to implement even though evidence suggests that this does improve exchange of data, and subsequently improves the safety and quality of care provided to older people and those with multiple co-morbidities.

System-level changes are required to deliver quality, coordinated and economically viable care to an ageing population that have co-morbidities as the norm rather than the exception (Reference JesteJeste, 2011). Some authors have suggested that evidence-based practices need to change from traditional randomized controlled trials that are costly and time-consuming to a more pragmatic approach; with quality improvement gaining momentum, implementation research can add great value to innovation and transferability across systems (Reference BalasubramanianBalasubramanian et al., 2015; Reference McGrathMcGrath et al., 2016; Reference Thompson and JonesThompson & Jones, 2016). Some countries in Europe are more advanced on their journey to integrated care than others, with governments prioritizing it on national agendas over the last 20 years, and others are less worried and more confident about future challenges (Economist Intelligence Unit, 2012). Finland, for example, has spent the last 30 years developing centralized integrated care approaches aimed at optimizing care for older people, as well as those with issues with mental health or substance misuse and younger children (Reference Mur-Veeman, van Raak and PaulusMur-Veeman, van Raak & Paulus, 2008). Integration of long-term care to meet the needs of ageing populations will remain challenging but will be an important area for organizational development, training and research in the future (Reference LeichsenringLeichsenring, 2012).

Geriatricians and other staff groups specializing in coordinated care for older people need to lead the way by using their expertise to enter leadership positions and work in partnership with physicians, researchers, and other health care professionals, which is crucial to achieving a critical mass. Together, they can lead a comprehensive national health agenda for frail older people and advocate ground-breaking policy changes (Reference Nikolich-ZugichNikolich-Zugich et al., 2015).

Conclusion

Older people are increasingly the main focus of much of hospital care. Older people with frailty are at high risk of hospital admissions, increased mortality, and care home utilization, and there is much that the design of hospital services and their associated community and primary care services can do to reduce these issues. There are opportunities from a number of new approaches to the management of care for older people and from changes in how professionals work and how they come together in teams more effectively. The acute hospital remains a centre of care provision to the frail and the vulnerable, but it sits within the wider context of the community and social care arrangement, where integration of care is vital to the provision of holistic care to people with frailty. There are major challenges from workforce shortages and a need to equip a wide range of professionals with the skills to help them care for older people more effectively. A shift in focus is needed in managing the complex pathway of patients through the health care system and, in many parts of Europe, reducing their dependence on the hospital.

Introduction

With an estimated 1.75 million deaths from cancer in Europe in 2012 (Reference FerlayFerlay et al., 2013), cancer is the second leading cause of death in Europe (World Health Organization, 2012). Diagnosis, treatment, continuing care, and in many cases palliation account for a substantial volume of the work of the acute general hospital. Yet while the word “cancer” is widely used in popular discourse, it is important to recognize that it is not a single disease but rather a pathological process that can affect almost all organs of the body. This process involves uncontrolled tissue growth, based on changes related to genetic or acquired abnormalities of the DNA, or related processes in the cell. Genetic changes that cause cancer can be inherited or, more commonly, they arise during a person’s lifetime as a result of errors that occur by chance as cells divide or because of damage to genes caused by environmental exposures such as chemicals in tobacco smoke or ultraviolet radiation. The clinical management of cancer thus depends on both the nature of the pathological processes involved, increasingly being characterized at the molecular level, and the organs affected. An individual’s cancer is thus characterized by a unique combination of genetic changes, which can change over time, for instance as a result of developing resistance by selecting clones of therapy-resistant cells. As a consequence, there has been an important paradigm shift from organ-based interventions to a patient-centred and targeted treatment for which increasingly innovative biological therapies are being discovered. In addition, cancer shares certain risk factors with other diseases. Thus, patients with cancer may be at greater risk of those other conditions. For example, tobacco use, which is the leading preventable cause of cancer in Europe, is associated not only with cancers of the lung but also with many other cancers, while also contributing to other conditions, such as coronary heart disease (Reference PetoPeto et al., 2012).

Cancer diagnosis and treatment have changed substantially in the past decades, with, for example, the advent of new chemotherapeutic agents transforming many cancers from short-lasting fatal illnesses into long-term chronic disorders. With increased understanding of the underlying disease processes, there have been considerable advances in early detection and diagnostic imaging, genetic profiling, and increased treatment options, including the introduction of targeted drugs and multidisciplinary care in many settings. In addition, and related to improved survival rates, cancer care takes account of psychosocial aspects, quality of life, patients’ rights, and empowerment and survivorship. In this chapter we explore these shifts in cancer treatment and care, with a focus on oncological hospital care in Europe.

The burden of cancer in Europe

In 2008 one-quarter of the global cancer burden was observed in Europe, which is striking given that the total European population comprises only one-ninth of the world’s population (Reference FerlayFerlay et al., 2013). For 2012 the Globocan project predicted an incidence of 3 715 000 cases with a five-year prevalence of 9 701 000 cases. There were an estimated 3.45 million new cases of cancer (excluding non-melanoma skin cancer) and 1.75 million deaths from cancer in Europe in 2012 (Reference FerlayFerlay et al., 2013).

Female breast cancer (464 000 cases), colorectal cancer (447 000), prostate cancer (417 000) and lung cancer (410 000) were the most frequent cancers, together representing half of the overall cancer burden in Europe in 2012 (Reference FerlayFerlay et al., 2013). The most common cancer modalities leading to death in 2012 were lung cancer (353 000 deaths), colorectal cancer (215 000), breast cancer (131 000) and stomach cancer (107 000). Incidence varies across the region, however, with cancers resulting from external carcinogens and bacteria (e.g. stomach cancer) tending to be higher in eastern Europe and Portugal, while breast and prostate cancer are more common in western Europe. Data from the International Agency for Research on Cancer (IARC), an agency within the World Health Organization, found the incidence in western European countries to be over 244 per 100 000 in 2012, compared to between 177.3 and 244.2 per 100 000 in eastern Europe.

Overall, cancer incidence continues to rise, with growth rates of up to 2% or 3% per year across Europe. As survival is also gradually improving, prevalence is growing at an even quicker pace, leading to increased numbers of cancer patients (those still alive but in various stages of disease after primary treatment) and cancer survivors (those who have ended therapy and are in follow-up schedules).

Cancer survival rates are typically used as an indicator of the quality of cancer care, from prevention and screening to treatment. In Europe the EUROCARE study has systematically collected survival data from national cancer registries to monitor trends in cancer survival in children and adults (Reference BerrinoBerrino et al., 2007; Reference AngelisDe Angelis et al., 2014). EUROCARE data show large differences in survival, with some analyses linking differences in survival to differences in spending on cancer care, with the Nordic countries and Switzerland scoring favourably compared to the rest of Europe (Reference Luengo-FernandezLuengo-Fernandez et al., 2013). However, interpretation of the data is challenging because of persisting variations in the quality of data available, and the challenges of adjusting for case mix-when interpreting observational studies (Reference LymanLyman, 2013), as well as how best to respond to this evidence (Reference WhalenWhalen, 2010). What is clear is that greater resources will be needed to respond to the combination of a projected rise in the number of cancer cases and technological innovations that could potentially improve outcomes (Reference Aggarwal, Ginsburg and FojoAggarwal, Ginsburg & Fojo, 2014).

The development of contemporary cancer care

Cancer diagnosis and treatment have progressed rapidly since the discovery of the cellular origins of cancer in the 1860s, but mainly in incremental steps. Important developments came about from the 1950s onwards, with advances in radiation technology and, in particular, cancer chemotherapy such as the treatment of childhood leukaemia and, in adults, Hodgkin’s disease from the mid-1960s, with success of adjuvant treatment of breast cancer since the 1970s (Reference DeVita and RosenbergDeVita & Rosenberg, 2012). At the same time, a greater understanding of the causes of cancer has increased scope for primary prevention, reducing the risk of developing disease. The most prominent example is perhaps the discovery of tobacco smoking as a cause of cancers of the lung and various other organs, with declines in the occurrence of lung cancer and subsequently mortality as a consequence of antismoking measures (Reference Jha and PetoJha & Peto, 2014). The discovery of certain viral infections as a cause of cancer has also led to the development of vaccines against, for example, certain types of human papilloma virus (HPV) for the prevention of cervical cancer or hepatitis B virus for liver cancer.

Recent advances in the understanding of biological functioning of the cell have increased our understanding of cellular mechanisms, enabling the development of targeted drugs that have been very successful in certain subgroups of patients. Among the most recent developments is immunotherapy, which provides for progression-free survival in tumours that were previously considered to be uniformly fatal, such as metastatic melanoma and lung cancer.

While advances in screening have enabled early detection of certain cancers, albeit at a risk of over diagnosis for some (Reference ViguierViguier, 2015), these changes have had considerable implications for the management of cancer, which increasingly involves a complex array of interventions that require different professionals working together in a coordinated fashion to enhance outcomes for people with cancer. As it can involve many disciplines, sequential and parallel process steps, different handovers and frequent patient contacts by different disciplines, cancer care is increasingly organized through MDTs and along cancer care pathways.

The cancer care pathway

The cancer care pathway describes the patient’s journey from the initial suspicion of cancer and symptom-based investigations, or through screening and early detection, to the various diagnostic procedures leading to a diagnosis of cancer, followed by treatment, which typically involves a selection of one or more interventions, such as surgery, radiotherapy, or chemotherapy. Depending on the outcome of the primary treatment, the patient will receive follow-up care and rehabilitation or, where the tumour remains active or is advanced, undergo further treatment or receive palliative and end life care when the tumour proves incurable (Figure 5.1).

Figure 5.1 The cancer journey

Source: © Cancer Care Ontario

The precise nature and scope of the cancer care pathway differs between cancer types and countries. Detailing cancer care pathways provides patients and professionals with a better understanding of the complex processes that are involved in treatment, while also contributing to enhancing the patient journey to strengthen high quality cancer care. Each pathway identifies the different steps and recommended care processes at each stage of the journey (Cancer Council Australia, 2016).

In countries where the general practitioner (GP) acts as gatekeeper to specialist care, such as the United Kingdom and the Netherlands, most cancers are diagnosed by a specialist after presentation of complaints or symptoms to the patient’s GP, while others are diagnosed upon emergency presentation (Reference RubinRubin et al., 2015). A proportion of cancers is detected through screening programmes such as for breast cancer, colorectal and cervical cancer, although percentages differ across cancer sites and coverage of related programmes in different health systems. Countries where patients can directly access specialist care enable direct and extensive diagnostics; this can lead to overuse of diagnostic procedures. On the other hand, there are some concerns that overly stringent primary care gatekeeping may introduce inappropriate delays. Clearly, it is difficult to get the right balance.

As we shall see below, the diagnosis and treatment of common tumour types is commonly provided by medical specialists within a hospital setting. Many countries have also established designated cancer centres for the delivery of specialized care for a large portfolio of common and rare tumours, serving also as tertiary referral centres for patients with rare tumours, late-stage disease or other difficult cases. Comprehensive cancer centres usually undertake a wide range of activities in translational cancer research, from basic scientific discovery, to the delivery of novel approaches, to care of patients with cancer, such as targeted therapies.

The precise nature of the cancer patient journey differs for different types of cancer. Figure 5.2 illustrates a typical pathway for a patient with breast cancer in a cancer centre in the Netherlands. In this example, the patient would typically consult with a range of specialists within the cancer centre, which would also be responsible for aftercare. In some countries therapy is provided in “shared care” arrangements involving office-based physicians or local hospitals, for instance in order to provide chemotherapy closer to the patient’s home.

Figure 5.2 Breast cancer patient pathway, the Netherlands

Source: Undisclosed hospital in the Netherlands

Although most types of cancer care require specialized equipment and staff, there is an increasing trend to move more parts of the cancer care pathway into the community. Care in the community takes several forms, including chemotherapy delivered in people’s own homes (Reference CorbettCorbett et al., 2015), rehabilitation in community settings, blood and other monitoring tests in general practices or local settings, and increased access to local services and support groups (Macmillan, 2014).

Patient-focused, integrated care initiatives can provide greater quality, efficiency and patient satisfaction (Reference LeutzLeutz, 1999; Reference Burns and PaulyBurns & Pauly, 2002; Reference Kodner and SpreeuwenbergKodner & Spreeuwenberg, 2002). Evidence emerging over the past 20 years suggests that the transition of cancer care from oncologist-led models to nurse-led models in cancer centres or primary care-led models in the community may improve cancer outcomes (Reference GrunfeldGrunfeld et al., 1999; Reference WattchowWattchow et al., 2006; Reference LewisLewis et al., 2009; Reference Grunfeld and EarleGrunfeld & Earle, 2010; Reference SussmanSussman et al., 2011). Primary care providers are often willing to assume follow-up care with appropriate guidance and a clear path for transition of care for their patients, and they are more likely than oncologists to provide preventive interventions directed at non-cancer conditions (Reference GiudiceDel Giudice et al., 2009; Reference Grunfeld and EarleGrunfeld & Earle, 2010).

Multidisciplinary teams

We have noted above that the management of cancer increasingly involves a complex array of interventions that require different professionals working together in a coordinated fashion to enhance outcomes for people with cancer. Figure 5.3 provides an illustration of the range of staff involved in the breast cancer care pathway introduced in Figure 5.2. Optimizing delivery of the care pathway and patient outcomes will require close coordination and communication among the different professionals involved. Health providers are increasingly drawing on MDT working to enhance decision-making between health care team members and patients (Reference FleissigFleissig et al., 2006; Reference BorrasBorras et al., 2014). MDTs usually address one type of cancer or a group of cancers. Oncology MDTs can include surgeons, diagnostic and therapeutic radiologists, pathologists, medical and clinical oncologists, nurse specialists, and palliative-care physicians, among others. Such a team will often collaborate closely with other supportive professionals, such as psychologists and psychiatrists (Reference FleissigFleissig et al., 2006).

Figure 5.3 Breast cancer pathway for staff, the Netherlands

Source: Undisclosed hospital in the Netherlands

The move towards MDT working in oncology has been supported by several expert groups and it is now considered the standard in cancer care in most countries in Europe and elsewhere (Reference BorrasBorras et al., 2014). Some countries require that the management of all patients with cancer within MDT conferences should be the norm, although some cases that are uncomplicated will be dealt with according to standard guidelines without being discussed by all involved.

Overall, the adoption of MDTs in cancer care has been rapid. For example, in England in the mid-1990s fewer than 20% of cancer patients were managed by an MDT compared with more than 80% in 2004 (Reference Griffith and TurnerGriffith & Turner, 2004). In the Netherlands the peer review system for hospital cancer services, which was introduced in 1994, provided a strong stimulus for the adoption of MDT working (Reference KilsdonkKilsdonk et al., 2015a, Reference Kilsdonk2015b). Although it is difficult to evaluate the exact mechanism through which an MDT exerts its effect and little direct evidence exists, MDT working has been linked to improved patient outcomes, increased recruitment into clinical trials, and better job satisfaction and psychological well-being among health professionals (Reference FleissigFleissig et al., 2006; Reference PillayPillay et al., 2016). For example, Reference PillayPillay et al. (2016) found, based on a systematic review, that MDT meetings impact positively upon the ways cancer patients are assessed and managed. This is consistent with a review by Reference TaplinTaplin et al. (2015), which suggests that using team-based approaches across the care continuum can improve access to and the quality of care processes and structures. However, robust evidence on the impact of MDTs on patient outcomes such as survival remains weak. Overall, while they appear intuitively to be beneficial, the current evidence base provides only a limited degree of support for their widespread use (Reference PillayPillay et al., 2016) and, at least for now, it may be more cost-effective to limit MDT meetings to the discussion of particularly complex or controversial patients.

Barriers to delivering optimal care and the sustainability of the oncological service system

General trends in oncology care

Looking ahead, there are some trends in cancer care that will have especially profound consequences for the hospital. These include precision medicine, targeted treatment, and immunotherapy; image guided interventions; and improved survivorship and survivorship care.

Organizational trends in cancer care and hospital-based oncology across the EU

Cancer Care in the hospital of the mid-21st century

Cancer will account for a growing volume of hospital activity in coming years. Not only does this mean that more patients will be offered innovative and promising treatments, but the sustainability of the health system, in terms of human and financial resources, will remain under continuous strain.

Perhaps the most important message from this chapter is that the care of cancer in hospitals has become vastly more complex than in the past, in terms of both the technical ability to characterize and understand tumours and to individualize their treatment, and the organizational responses that bring together staff with differing types of expertise. This will require close coordination between clinicians and managers. Further concentration and specialization of services will be inevitable, and this will require continuing networking, increasingly using innovative information technology, telehealth, and telemedicine to ensure that concentration of services does not undermine geographical access to services. It is very likely that regional networks of hospitals will organize cancer care among themselves, concentrate and share expensive diagnostics and intervention capacity, and establish liaisons with referral centres of expertise for rare tumours. Networks of reference centres are established in the EU and offer considerable potential for promoting research and innovative treatments for patients with some very rare tumours, or tumour subtypes.

Introduction

Studies suggest that around 25% of the European population receive treatment for a chronic condition. As the population ages, the prevalence of chronic diseases increases, with an average of two per person in their mid-60s and three for those surviving to their mid-70s (Reference BarnettBarnett et al., 2012). People with chronic diseases now form a sizeable proportion of all hospital admissions both elective and emergency. Once admitted to hospital, people with multiple complex conditions may require a long length of stay and place a significant demand on acute hospital services.

Chronic obstructive pulmonary disease (COPD) is such a condition which affects between 3% and 10% of Europe’s adult population and accounts for 1.1 million hospital admissions per year (Reference GibsonGibson et al., 2013). While it is a preventable condition, once contracted it is not curable and management strategies aim to reduce the burden of disease both on the individual and on society, which is currently estimated to cost the EU €200 billion per year (Reference GibsonGibson et al., 2013). Managing COPD and other long-term conditions effectively is critical not only for patients and carers but for the effective functioning of the health system itself.

In this chapter we use COPD as an exemplar of a chronic condition whose management depends on the work of the acute general hospital. As noted in Chapter 1, while the care of patients with COPD involves many specific features, it also raises issues of more general relevance to many common chronic disorders. Here we describe the burden of the disease in detail, the current management of the condition within the hospital system, and options for future care pathways illustrated by innovations that have already been implemented across a range of European health systems.

What is COPD?

Chronic obstructive pulmonary disease is an overarching term for the clinical and patho-physiological manifestations of the inflammatory response of the lungs to the repeated inhalation of noxious particles and fumes. This inflammation over time results in damage to both the airways, causing narrowing, and to the alveoli, manifesting as emphysema. People with COPD will characteristically exhibit the symptoms of cough, often with sputum production and usually worse over the winter months, with breathlessness being the most prevalent symptom (Reference Aitsi-Selmi and HopkinsonAitsi-Selmi & Hopkinson, 2015) that tends to be progressive over time and may be accompanied by wheeze. The condition results in airflow limitation in both the small and large airways that is detected by lung function tests, notably spirometry, which are used to confirm the diagnosis (Reference BarnesBarnes et al., 2015). People who develop COPD probably have a genetic predisposition so that when exposed to noxious inhaled substances, most commonly cigarette smoke but also occupational dusts and, especially in low income countries, biomass fumes in poorly ventilated housing, they react with an increased inflammatory response that causes intrinsic lung damage.

The clinical course once COPD develops is variable but overall is progressive and may lead to death from respiratory failure or as a result of respiratory infection, which may cause intermittent acute exacerbations of the condition. There are a number of identifiable phenotypical expressions of the condition that provide an opportunity for delivering more personalized interventions to individuals. The one intervention that would make most difference to all those with COPD, however, is to remove the exposure to the noxious substances provoking the lung inflammation (Reference VestboVestbo et al., 2013).

Additionally, co-morbidities may have a significant impact on clinical presentation and prognosis (Reference LaforestLaforest et al., 2016) and reduced physical activity is a well recognized consequence of the condition (Reference Hopkinson and PolkeyHopkinson & Polkey, 2010). Accordingly, there is a need for early intervention to prevent later more severe and expensive disease.

The burden of COPD

It is difficult to provide reliable estimates about the population health burden that can be associated with COPD. This is in part because the disease is often under-diagnosed as it is not usually recognized until it is clinically apparent and moderately advanced (Reference LamprechtLamprecht et al., 2015). Furthermore, where estimates are available, these frequently draw on varying definitions and diagnostic criteria. For example, studies of COPD prevalence have variously used self-reported respiratory symptoms, physician diagnosis of COPD, or the presence of airflow limitation with or without spirometric tests as criteria. As a consequence, available estimates vary by study design.

The recent 2010 update of the Global Burden of Disease (GBD) study revisited previous estimates on respiratory diseases and estimated the number of people to have COPD at 328 million globally (Reference VosVos et al., 2012). Worldwide the prevalence of COPD is rising, with the highest rise in the eastern Mediterranean region (119% between 1990 and 2010) and the lowest rise in Europe (22.5%), both, however, being substantial. Overall prevalence among men is around twice that of women but there are significant national variations (Reference AdeloyeAdeloye et al., 2015). More recently there is evidence of falls in COPD prevalence within some western European countries, for example in Spain (Reference SorianoSoriano et al., 2010) and Finland (Reference PelkonenPelkonen et al., 2014), thought to be as a result of tighter tobacco controls.

COPD is one of the major causes of mortality worldwide (Figure 6.1). There has been a steady increase in mortality over time (Reference JemalJemal et al., 2005) and it was estimated that COPD would become the fourth leading cause of death globally by the year 2030 (Reference Mathers and LoncarMathers & Loncar, 2006), a projection that was confirmed by the 2010 GBD study, when COPD became the third leading cause of death globally (Reference LozanoLozano et al., 2012). Within Europe it is estimated to have caused 150 000 deaths in 2010, potentially rising to 338 000 a year by 2030 (Reference GibsonGibson et al., 2013).

Figure 6.1 Age-standardized death rate from COPD per 100 000, both sexes, 2016

Source: Institute for Health Metrics and Evaluation, 2014

The COPD care pathway

It is suggested that a high proportion of people with COPD remain undiagnosed either because they have few if any symptoms in the milder stages of the disease or because clinicians are slow to associate common symptoms of cough or breathlessness with the need to screen for COPD (Reference LlordesLlordes et al., 2015). People with diagnosed COPD present usually with symptoms on the background of an exposure history, most commonly to cigarette smoke, but in around 5–15% of cases to occupational fumes, with exposure to biomass fuels a particular challenge in low and middle income countries (Reference Smith, Mehta, Maeusezehal-Fauz and EzzatiSmith, Mehta & Maeusezehal-Fauz, 2004). The diagnosis is made clinically but by definition it must be confirmed by spirometry lung function testing.

Once a diagnosis is made, the underlying lung damage is largely permanent and the prognosis is of a slow decline in lung function and symptoms related to the continuing exposure to the causative agent. Thus in a cigarette smoker, stopping smoking will halt further decline but not resolve any existing disease (Box 6.1).

There are no interventions other than smoking cessation that impact the natural history of the disease and arrest the decline in COPD. Management outside of smoking cessation is therefore largely designed to improve symptoms and functional status, and interventions outside smoking cessation tend to be matched to the stage of the disease and the severity of symptoms. This is further illustrated in Figure 6.2, which provides an example of a care pathway to improve outcomes in COPD.

Figure 6.2 Example of a care pathway to improve outcomes in COPD

Source: Matt Kearney. Available at: https://www.networks.nhs.uk/nhs-networks/east-of-england-respiratory-programme/key-documents/documents/Commissioning%20for%20Better%20Outcomes%20in%20COPD.pdf (accessed 20 February 2020)

In the late stages of the disease, long-term oxygen therapy (LTOT) and non-invasive ventilatory (NIV) support may prolong life (Box 6.2) and optimizing palliative care interventions may also improve both quality and length of life. Lung transplantation in selected patients is an ultimate option in very severe COPDs, although this tends to be available to a small minority of end-stage patients only (Reference Lane and TonelliLane & Tonelli, 2015).

Progressive decline in lung function may lead to significant disability and quality of life impairment where palliative care interventions are most appropriate. For some people COPD leads to death; the condition accounts for around 2.5% of all deaths in Europe (Global Health Observatory, 2008). Death from respiratory causes is, however, not inevitable in COPD and a number of patients will die from linked conditions that share the same aetiology of cigarette smoking, for example heart disease and lung cancer (Reference ZielinskiZielinski et al., 1997; Reference McGarveyMcGarvey et al., 2007).There is growing recognition that older patients with COPD suffer with multiple morbidities, all of which contribute to the state of frailty, that must be factored into their management. Death will more likely result from one of these diseases than it will from COPD, which in itself will be a major driver in future hospital models of care.

The effect of social factors on the outcome determinants of this complex health picture will further motivate collaboration between social and health care providers. As with many chronic diseases, the care provided to people with COPD tends to be fragmented in most system contexts. Countries are experimenting with new models of care that are designed to better meet the needs of people with long-term conditions (Reference Nolte, Knai and SaltmanNolte, Knai & Saltman, 2015), including for COPD, based on the available evidence of the (cost-)effectiveness of structured disease management of COPD (Reference SteutenSteuten et al., 2009; Reference KruisKruis et al., 2013).

The level of interaction between the patient and the hospital will depend very much upon the stage of disease of the patient, the level of support available for out-of-hospital care and the complexity of the individual case. While stable patients with COPD are typically managed outside hospital, there are a number of indications for specialist input that will require hospital care, even in those stable patients. But again these are most often delivered in the outpatient or ambulatory care setting rather than resulting in an admission to hospital. In cases where the diagnosis remains unclear or where, despite optimal treatment in primary care, a patient remains symptomatic, referral for a hospital-based specialist opinion is appropriate. In complex cases at the more severe end of the spectrum some interventions such as endoscopic lung volume reduction and surgical techniques are only available within the hospital setting (Box 6.3).

Workforce

The workforce required to staff the future European hospitals will need to meet the challenges posed by advances in medical innovation and technology, the changing population needs as reflected by older people with complex multiple chronic conditions, but most of all by the impending shortages of clinical staff. While there is no European standard for what constitutes an ideal hospital staffing level to make such a judgement, evidence from large-scale studies suggests that higher numbers of doctors and of nurses per hospital bed correlate with better outcomes for patients (Reference NeedlemanNeedleman et al., 2011; Reference HartlHartl et al., 2016). For example, using data from the European COPD Audit, Reference HartlHartl et al. (2016) found that a higher number of respiratory specialists per 1000 beds reduced the risk of post-discharge mortality for patients with COPD. As we have noted above, the European and UK/England and Wales COPD Audits highlight not only large variations in clinical staff per 1000 beds between countries but also within each country (Reference López-CamposLópez-Campos et al., 2014; Reference StoneStone et al., 2015). This suggests that workforce distribution is not necessarily based upon workload or patient need but is dependent upon other factors that might include local funding, hospital status or specialty and academic interest, geography and social factors, or simply historical models of care.

The optimal management of patients with COPD faces the same challenges as the health care sector does more widely in deploying an appropriately trained workforce, with shortages in some medical specialties, and especially nurses, alongside demographic changes. Countries are experimenting with extended and new roles for nurses in particular to support nurses and physicians working within the hospital system. Such roles include physician associates with a science-based first degree plus a vocational master’s degree who are trained to perform a number of duties, including taking medical histories, performing examinations, diagnosing illnesses, analysing test results, and developing management plans. They are supervised by a senior doctor but take on many of the more routine duties that a physician might otherwise fulfil. Respiratory nurses or physiotherapy specialists are independent practitioners with master’s level or equivalent training in respiratory medicine and often specifically in COPD care. They may be deployed as part of a hospital or joint community team bridging the gap between hospital and community care with in-reach or outreach connectivity. They may lead a multiprofessional team with or without medical input. Key roles are within supported discharge, admission prevention teams and pulmonary rehabilitation. The exercise physiologist is a professional role developed in the United States and now adapted in some European systems. They usually hold a biomedical sciences degree with an additional master’s qualification in exercise physiology, and specializing further in the management of people with chronic conditions, notably heart and lung disease. Exercise physiologists may prescribe and oversee a personalized exercise programme for patients with COPD and may also supervise a pulmonary rehabilitation programme for a larger number of patients with COPD. The ability to plan and oversee tailored exercise programmes raises the potential to extend rehabilitation to those with co-morbidities with perhaps greater confidence than staff trained purely in COPD or respiratory health care. The result is a blurring of traditional responsibilities in an attempt to provide a wider professional team contributing to a competencies-based workforce. The benefits of this trend include a refocusing of roles around the needs of the patient today rather than to continue a pattern of service delivery configured decades in the past, and to provide multiskilled staff who can meet most of the patient’s needs in a single episode of care rather than requiring multiple professionals to input multiple narrow specialized interactions.

COPD teams have been at the forefront of developing new professional roles but there is little consistency of adoption across Europe. The aforementioned European COPD Audit report found that at the time of the study participating hospitals in several countries did not have specialist respiratory trained physiotherapists (Romania, Spain, Turkey), or nurse specialists (Austria, Poland, Switzerland) and while all countries recognized respiratory function technicians as a team member, they were not employed in all hospitals (Reference RobertsRoberts et al., 2013). Even where there are roles with similar titles, their competencies and scope are often difficult to compare because of differences in training, and the clinical systems within which they operate.

Specialist resources

There is no equivalence across Europe in terms of function and size or resource level for hospitals that establishes either a minimum or optimum standard, although there are standards described within international COPD recommendations for the interventions that should be available to patients admitted to hospital with exacerbations of COPD (GOLD, 2017). The patient might reasonably expect to receive the same high quality care wherever they present, accepting that this might not be all provided in one location. A range of factors will determine what can be provided, ranging from geography and accessibility to workforce availability and financial pressures on resource allocation. Within any one country, however, systems that share data and promote real-time interaction between clinicians working separately have the potential to reduce the variation in quality of care that is currently the reality. Life-saving treatments can be administered if patients are appropriately diagnosed and triaged in terms of severity using history taking and clinical examination followed by basic blood tests, arterial blood gas measurement and a chest radiograph which should be available at all hospital sites. Severely ill patients with acute respiratory acidosis need to have access to ventilatory support within a period of 1 to 3 hours of presentation according to management guideline recommendations (Reference Celli and MacNeeCelli, MacNee & ATS/ERS Task Force, 2004; Reference VestboVestbo et al., 2013). This is one key and potentially life-saving intervention outside the basic level of care that can be provided in all locations, i.e. antibiotics, steroids, bronchodilators and oxygen therapy. NIV, while currently often delivered by respiratory specialists, is also managed in some countries by anaesthetists, and some services are led by specialist nurses or physiotherapists who could be supported remotely by specialist doctors if not available on site (Reference Bierer and So HooBierer & Soo Hoo, 2009; Reference PintoPinto et al., 2010; Reference CabriniCabrini et al., 2015; Reference AmbrosinoAmbrosino et al., 2016). Invasive ventilation required for those who fail on non-invasive support or where there are other factors making this the more appropriate intervention is more complex and is nearly always delivered by anaesthetic-trained staff in an intensive care unit setting. Ideally such facilities – i.e. the equipment, monitoring facilities, the staff and the specialist unit – should be available in every hospital admitting COPD exacerbations or be accessible by rapid site transfer. This is not the case at present (Reference RobertsRoberts et al., 2013; Reference López-CamposLópez-Campos et al., 2014).

For the subacute situation all hospitals should also provide diagnostic facilities available to hospital, primary care and community physicians that will ensure accurate diagnosis of COPD. These would include lung function testing and imaging, notably chest radiography and CT scanning. Advice from an expert clinician would be helpful in making the more difficult diagnostic cases where other conditions may exist as co-morbidities or as differential diagnoses.

Stable patients at the advanced stage of the disease will require more complex investigation and interventions that may include LVRS and potentially, in a very small number of cases, lung transplantation. Such patients would be referred to a specialist centre with specific expertise in these techniques and with the expensive equipment and clinical staff available. Once again the implementation of technological solutions would provide opportunities for patients in this situation to be considered regardless of their physical location by the transmission of images, electronic patient records and by video interviews between clinicians and patients. In this manner a hub and spoke model provides an efficient and effective use of resources.

In summary, a technological interconnectivity of hospitals provides an opportunity for all patients to access specialty opinions regardless of their location and situation. Critical to good patient care will be establishing the correct diagnosis at an early stage and, for patients admitted to hospital, early access to assisted ventilation if needed and then prior to discharge a comprehensive care package that will reduce the progression of the disease and risk of further admission. A small number of highly specialized units could provide nationally available expertise to all while networked to a larger number of more local provider units. These in turn, or through the national specialty units, could also provide networked support to both primary care health professionals and to patients and carers facilitated by technological solutions.

Barriers to delivering optimal care

Optimal care can be defined as a composite of evidence-based and consensus-based interventions that promote good outcomes for patients, and guidelines, or in a resource-constrained system might more productively be considered as the appropriate implementation of these interventions within a value-based hierarchy. Unlike for most chronic medical conditions, this value-based approach is well documented for COPD and it provides a useful reminder to clinicians of their responsibilities to the system as well as to the patient (Figure 6.3).

Figure 6.3 The pyramid of value for COPD interventions

Source: IMPRESS Guide to the relative value of COPD interventions (2012). British Thoracic Society Reports, Vol. 4, Issue 2. ISSN 2040–2023.

Implementing optimal care is a multifaceted challenge with the need to modify clinical behaviours and a culture that requires a shift in the balance of control towards patients and away from clinicians. The European evidence relating to the quality of care offered by hospitals confirms that the complex interactions that constitute an organization account for the majority of the variation between units (Reference RuparelRuparel et al., 2016). The principle of value to the system is equally valid when applied to a hospital as it is to the care offered to an individual patient. The evidence that resource-rich organizations perform better in delivering high quality COPD care is relatively weak and although there are some associations between medical staffing levels and better care outcomes (Reference RobertsRoberts et al., 2013; Reference HartlHartl et al., 2016), there is no direct evidence of a link with other inputs. However, it is concerning that European audits reveal that some elements of treatment that have been shown to benefit patients with COPD are unavailable in many of the hospitals that care for these patients.

A useful example of the complex organizational interactions that account for some unwarranted variations in care is the degree to which specialist COPD care is offered to patients within any institution. Much care of patients with COPD in hospitals is delivered by non-respiratory specialists and the evidence is that generalists are less likely to deliver optimum COPD care to their patients with COPD (Reference HoskerHosker et al., 2007; Reference López-CamposLópez-Campos et al., 2015). At a population level, most COPD care is delivered out of hospital by generalists, while most of the expertise remains locked within hospital buildings. Providing greater access to that expertise both within and outside the hospital is an important facet of delivering optimal care. Sadly, patients themselves are unlikely to understand what good care looks like and are therefore unlikely to be able to negotiate high quality care with their health teams. Better-informed patients might drive better COPD care.

Until regular measurement of care quality becomes a routine element of clinical care it remains difficult to identify areas of excellence or those where improvement is required. Engaging clinicians in reviewing performance data is a key challenge but if successful promotes the improvement of clinical practice (Reference FlottorpFlottorp et al., 2010). Leadership is required if Europe is to move forward in redesigning hospital care for patients with COPD. That must come from the health professions and from politicians. At present, there is no functional European health profession voice to provide that leadership and little evidence of a united political will.

COPD and the future hospital – summary

The hospital of the future is likely over time to be admitting sicker and frailer patients with COPD exacerbations. The evidence for ambulatory care as an alternative to admission (Reference RamRam et al., 2004a) and early discharge once admitted is compelling (Reference EchevarriaEchevarria et al., 2016) but will not be appropriate for all individuals who require a greater level of support. Particularly in health systems with under-developed primary care, these measures offer huge potential benefits to hospitals in the future. Such a hospital would be a central hub, supported by technology that could provide a learning and education resource supporting patient self-management (Reference SmidthSmidth et al., 2013) for a large population, over a geographical area well beyond its historical area of influence. Patients at risk of acute deterioration and admission could be directly linked to a COPD clinical monitoring team to provide the opportunity for early interventions to improve patient well-being (Reference McLeanMcLean et al., 2011). Patients would be managed at distance, gaining specialist expertise without the need to regularly travel to hospital appointments (Reference D’AnconaD’Ancona et al., 2014). Clinicians too could be connected using digital communication, sharing patient clinical records, laboratory results, and imaging, and holding multidisciplinary discussions with colleagues via video conferencing and email to provide wider access to expertise extending well outside the physical buildings of the hospital itself. The challenge has always been how to provide equality of access to higher standards of care regardless of geography. Providing a technological network of the highest level of expertise available to all provides an opportunity to make progress towards that ideal while managing more people in an out-of-hospital setting.

Introduction

Emergency medicine specializes in acute illness and injury (Reference EdwardsEdwards, 1996; Reference TangTang et al., 2010). It has developed from the realization that these conditions can occur at any time and that dealing with many of these events within more traditional medical specialties led to suboptimal care. Recently the increasing relevance of time-critical interventions such as those associated with complex trauma care, stroke thrombolysis and sepsis therapies have further underlined the importance of a clinically broad but temporally focused specialty. The provision of emergency care is therefore a key function of most major hospitals.

Irrespective of most other health system features, patients with acute severe illness or injury present to or are taken to an emergency department (ED). In the United Kingdom these departments have been officially termed accident and emergency (A&E) departments since the Platt report of 1961 (Anon, 1961). However, accidents and associated injuries have diminished in frequency across western Europe, with a particularly large reduction in injuries associated with road traffic accidents, interpersonal violence and occupational activities (Eurostat, 2017). Consequently, the mix of patients presenting to the ED or A&E has changed significantly over the last 50 years. Case volumes have, however, continued to rise in excess of population growth, especially since 2000; the reasons for this vary but most countries have seen an increased demand for the treatment of acute exacerbations of chronic disease and conditions associated with frailty and ageing (see Chapter 4). Ageing and population growth do not fully explain this growth in demand.

It is increasingly recognized that the presentation of illness is not related solely to aetiology or pathology and it is apparent that we are witnessing a changing utilization of emergency medical systems by patients of all age cohorts.

This chapter looks at the branch of medicine responsible for the initial treatment of many of these emergencies and the emergency departments within the acute general hospitals in which they are usually based.

The development of contemporary emergency medicine

Emergency medicine is a relatively new specialty. First formally recognized in the United Kingdom and the USA in the mid-1960s, it has undergone major changes in many countries since then (Reference Totten and BellouTotten & Bellou, 2013). Often starting as a service that provided triage and emergency treatment for victims of injury, modern emergency medicine covers the early management and investigation of a broad range of conditions in addition to trauma, from infectious diseases to psychiatric illness (Box 7.1). Most recently the specialty has evolved in response to pressures to specialize and standardize with demonstrable improvement in outcomes. For conditions such as sepsis, major trauma and stroke it has become increasingly clear that early expert intervention makes a significant difference (Reference CameronCameron, 2014).

In some countries it became common for patients admitted as acute emergencies to be dealt with in a single specialist emergency department rather than in different wards, clinics and departments within the hospital. This provided a rationale for the development of a separate specialty. There were also historic factors, including the development of major trauma care first developed in North America, in part in response to experience gained in the Vietnam War, spreading first to the British Isles in the 1980s and adopted more widely in Europe after 1994.

The provision of emergency medical care varies widely between and, at times, within countries. Internationally, two principal models have evolved, the continental European model (sometimes referred to as the “Franco-German” model) and the Anglo-Australasian-American model (Reference ConeCone et al., 2015). In continental Europe emergency care tends to focus on the critical care end of the spectrum and the management and investigation of emergencies requiring hospital care is undertaken by inpatient specialties. In this model the most seriously injured and ill are typically attended to by anaesthetist-led teams at the scene and often receive extensive treatment before transfer to the operating theatre, intensive treatment unit, or medical or surgical ward. In the Anglo-Australasian-American model treatment at the scene is usually more limited and predominantly paramedic led; the emphasis is on rapid transport to an appropriate hospital where emergency department clinicians are responsible for the investigation and management of the patients and the consequent decision to discharge or admit them.

Proponents of the European model assert that better outcomes are achieved when organ-specific specialists lead the investigation and treatment of patients. The Anglo-Australasian-American model contends that most patients do not arrive with an organ or even a specialty-based diagnosis but have multiple and often interacting conditions. However, the models have in general arisen not as a reflection of deliberate policy choices based on these views but because of circumstance, resource availability and history.

There are no high quality comparative studies of different systems. Moreover, most countries operate some components of each model. Thus, trauma care has evolved to reinforce pre-hospital interventions and direct transfer to major trauma units and centres, whereas patients who meet criteria to consider sepsis are often insufficiently “labelled” to allow triage to particular hospitals or even inpatient teams.

The emergency medicine care pathway

Ideally the emergency care system should commence at the first point of contact between the patient and a clinician or emergency call system. Current systems, though far from mature, aim to coordinate services to provide the most appropriate response to the medical needs of the patient. Where this is achieved, such a system should reduce the inappropriate use of hospitals, ensure that patients who require urgent care receive it promptly, and make best use of limited resources.

Workforce

The model and levels of staffing of emergency departments vary considerably depending on a combination of history, primary care provision, and the availability of emergency medicine specialists to provide dedicated staffing.

The Franco-German model has generally used junior medical staff, GPs and nurses with early senior specialist review of most cases before further investigation and treatment. By contrast the Anglo-American-Australian model has supported the development of emergency medicine specialists, with referral of about 25% of patients to specialty teams after assessment, stabilization, investigation and treatment has commenced.

The rising workload has outstripped the ability of the United Kingdom, Ireland and New Zealand to provide sufficient fully trained emergency medicine doctors to manage the service safely and within various process targets. Consequently, various strategies to make better use of other staff groups have been introduced. Such staff include advanced nurse/clinical practitioners, physician associates, paramedics and frailty practitioners. However, the changing nature of the case-mix related to an ageing demographic and the attendant problem of multimorbidity has created real problems for the Franco-German model. Patients presenting with single illness issues represent a minority of patients requiring admission; for this reason reliance upon traditional specialist inpatient teams is increasingly malaligned to patient need.

The role of the senior emergency medicine doctor varies among countries. The main determinant seems to be the number of senior doctors within a department at any one time. Many studies have shown the advantages of early senior intervention in a wide range of conditions improving outcomes and increasing admission avoidance (Reference PurdyPurdy, 2010). Senior staff leading and supervising cases in the resuscitation room is almost universal but there are varying approaches to the deployment of senior staff within the remainder of the emergency department. The most common models of this role are:

• Delivery – where the senior staff see and treat patients throughout their care.

• Instigation – where the senior clinician undertakes a rapid assessment and defines a plan which is then implemented by junior staff.

• Attending – where junior staff see the patients initially and then check with senior staff before referral or discharge.

• Consulting – where junior staff see the patient and ask for help when they perceive the need.

Emergency nurse practitioners are now well established in the United Kingdom but their acceptance in other countries is limited. They can provide a safe and effective minor injury service, although in some departments they may be more expensive than a junior doctor model as they are relatively well paid and may take longer to complete their work (Reference SakrSakr et al., 2003; Reference WilsonWilson et al., 2009). The barriers to implementation are related to emergency department culture, physician reimbursement systems and case-mix. In the United Kingdom advanced clinical practitioner programmes have been established to develop nurses, paramedics and pharmacists to become autonomous practitioners seeing a wide range of cases in the emergency department (Reference SwannSwann et al., 2013). Other somewhat niche roles have also been developed, such as emergency department practitioners (with a background as anaesthetic assistants/operating department practitioners) who can undertake investigations and invasive procedures in the resuscitation room.

The use of geriatricians in the emergency department has been shown to be effective at reducing admissions and is not associated with a high readmission rate (Reference Jones and WallisJones & Wallis, 2013). This may be better in a dedicated unit rather than in the main emergency department (Reference Sophia and BashirSophia & Bashir, 2014) and if supported by a wider MDT to facilitate assessment and discharge.

Every emergency department also needs support from imaging and pathology services, although there is an increasing use of near-patient testing (see Chapter 10). Turnaround times can be reduced but quality control may be more difficult and near-patient testing is often relatively expensive (Reference AshaAsha et al., 2014; Reference Larsson, Greig-Pylypczuk and HuismanLarsson, Greig-Pylypczuk & Huisman, 2015). Certain other specialties are often considered mandatory to support any emergency department that receives undifferentiated emergency cases; these include anaesthetics, intensive care, general medicine, general surgery, orthopaedic trauma, and paediatrics.

It is increasingly recognized that emergency medicine can be highly stressful (Reference BergerBerger, 2013) with consequent challenges for both recruitment and retention. High demand and low job control were found to be common in a systematic review but other factors included insufficient support at work, an imbalance between effort and reward, and organizational injustice (Reference Basu, Qayyum and MasonBasu, Qayyum & Mason, 2016).

Barriers to delivering optimal care

The key barriers to delivering optimal care are: rising levels of demand; inefficient use of resources; and downstream delays in the system which lead to queues and consequential overcrowding. These are compounded by problems arising from the physical design of some emergency departments and the workforce challenges discussed above.

Managing demand

It has been clearly demonstrated that difficulty in accessing primary care is related to higher emergency department attendances. Conversely, systems that have easy timely access to primary care have less emergency department usage. Similarly many emergency department attendances are preceded by unsuccessful attempts to obtain a primary care appointment. In some studies interventions to improve primary care access have resulted in reduced emergency department attendances (Reference WhittakerWhittaker et al., 2016), although extending the hours primary care is available has a limited effect and may not be cost-effective. For those systems where the emergency department receives substantial numbers of primary presentations the provision of co-located primary care facilities has been effective in decongesting the emergency department itself. In England alternative sites, such as urgent treatment centres, have been developed so people can be assessed and treated in a lower acuity setting than an emergency department.

Telephone advice lines that aim to direct the user to the most appropriate location in an appropriate timescale do not seem to reduce the workload to emergency departments and there is some evidence they increase overall demand (Reference TurnerTurner et al., 2013; Reference CollinsCollins, 2015). This may be improved by involving doctors and other clinicians in the call decision-making (Reference Anderson and RolandAnderson & Roland, 2015).

Good chronic disease management may be able to reduce the number of acute episodes if better control of the patient’s condition can result in fewer episodes of acute need, even if the general trajectory is one of deterioration, although this is rarely easy. Equally important is the early detection of, and intervention for, deterioration. A key part of this is patient education and a good understanding of their disease, together with an agreed plan ranging from self-care (e.g. home-held antibiotics for COPD), to seeking urgent advice before deteriorating further. Support for nursing and residential homes can also avoid attendances at the emergency department, by ensuring optimal ongoing care, good end of life planning, and the use of telehealth advice before calling an ambulance (Reference NickNick et al., 2015).

There is no evidence to support the idea that public information campaigns can reduce attendance at emergency departments. For most people it is a rare event for a different condition each time, and the appropriateness of attendance depends not only on medical considerations but also factors such as availability of alternatives and social support. Some disease-specific education campaigns have increased the early recognition of acute episodes but invariably have a high cost of false positives with consequent increase in emergency department attendances. Diverting people away is unlikely to be effective as most people believe the emergency department is the correct location for their care (Reference Anderson and RolandAtenstaedt et al., 2015) and there are some significant risks.

Although often advocated as a means to reduce demand, there is no evidence that co-payment schemes reduce inappropriate attendances (Reference ReedReed et al., 2005; Reference Selby, Fireman and SwainSelby, Fireman & Swain, 1996; Reference Siddiqui, Roberts and PollackSiddiqui, Roberts & Pollack, 2015) and they bring many other problems, often costing more to operate than they raise, while deterring necessary care. In Ireland attendances at emergency departments have increased significantly despite a co-payment system designed to encourage primary care use.

Finally social changes are also impacting on emergency departments. In the United Kingdom the “liberalization” of the alcohol licensing laws in 2005 has produced a wholly predictable increase in alcohol-related presentations. The public, media and politicians increasingly expect care seven days a week and 24 hours per day; this in turn has produced a disproportionate increase in demand during “anti-social” hours with major consequences for staffing.

Queues and overcrowding

Demand for emergency care is subject to high levels of variability – both seasonal and at different times of day and days of the week. Although there is some predictability to this, average hourly attendances are subject to wide variation (greater than 50%) (Reference BluntBlunt, 2014). Consequently, systems need to be able to deal with surges in demand and hence there needs to be some redundancy built into staffing and the physical environment. The situation is made worse by the fact that activity in planned care is often even more variable. These variations in demand, both predictable and random, combined with capacity constraints associated with historically high bed occupancy rates, ensure that emergency departments are prone to significant overcrowding during peak periods. This phenomenon is endemic to health systems in many countries, including Ireland, the Netherlands, South Africa, the United Kingdom and the USA – indeed, it is the one almost invariable feature of all current health care systems! Avoiding overcrowding requires better alignment of resources to demands. Within the emergency department this means speedy responses for requests for specialist consultation, access to diagnostics, enhanced bed availability, and prompt discharge when hospital care has been completed.

Within the wider hospital, delays in decision-making, investigation, discharge planning and discharge will mean that beds are not available to admit patients. This can lead to extensive overcrowding. Emergency departments are seldom staffed or designed to deal with a large group of patients awaiting admission. As a result standards of care deteriorate, key interventions are delayed or omitted, and both morbidity and mortality rise (Reference ForsterForster et al., 2003; Reference GuttmannGuttmann et al., 2011; Reference BodenBoden et al., 2016).

Effective design

The design of emergency departments needs to support effective and efficient function and many national guidelines exist (Department of Health and Social Care, 2013). Good design can also improve user experience and reduce aggression (Design Reference CouncilCouncil, 2011). But because buildings persist longer than any models of care, it is important to include flexibility in design to allow for increases in attendances but also to support new and future models of care. This design also needs to address the specific requirements of a range of groups including children, the elderly, those with cognitive impairment, those with mental health problems, and those with infectious diseases.

The future

Prevention measures have had sustained and large effects. Road safety initiatives – including safety belts, crash helmets, speed control, car design, and alcohol limits – have all contributed to the reduction in deaths and injury from vehicle incidents, especially in developed countries. Other health and safety interventions, especially in building design and the workplace, have also reduced the trauma demand in many emergency departments. Trauma is therefore a decreasing component of the workload in many emergency departments and its nature is also changing with the growth of an older population increasing the importance of injuries from falls (Reference KehoeKehoe et al., 2015; Reference SivarajasingamSivarajasingam et al., 2016).

The increase in population size, the current and projected disproportionate increases in the numbers of patients in the ninth decade of life and the consequent importance of managing frailty, co-morbidities, and cognitive impairment are pressing challenges.

Specialization of health care and the growth of new technologies over the past 40 years have delivered extraordinary improvements in patient care and outcomes but this trend now means that seldom can a single inpatient specialist or team deal with the majority of medical or surgical emergencies. Consequently there is a need for more precise diagnosis by the emergency medicine clinician before referral. This has substantial resource implications both for the emergency medicine workforce and the support services of pathology and diagnostic imaging. The development of time-critical interventions similarly requires sufficient resources to deliver such treatments on a 24/7 basis. New staff roles can be developed to help support this – not just as extensions of the roles of nurses and other professionals. Where emergency medicine grows, it will be important to ensure that other specialisms withdraw from offering more general support for emergency care.

Crucially, the need to maintain minimum caseloads to sustain expertise means that often subspecialty services will be reorganized to fewer centres. In the future it is likely that common non-complex conditions will be treated in most hospitals but for less common/more complex conditions and treatments patients will need to be transferred to larger centres. Inevitably such patients will continue to present to any emergency department. Properly configured and resourced networks (akin to those established for trauma) will need to be established and supported to ensure optimal care and appropriate transfer for all patients.

Approximately 15% of all emergency hospital admissions in England involve the 1% of people in their final year of life. There is more to do to ensure that patients who are at the end of life do not spend their last hours in an emergency department through appropriate advanced planning and ensuring that ambulance and other services have information available about these plans immediately available.

Finally Denmark, the Netherlands and the United Kingdom have all seen significant reductions in the number of emergency departments, with more expected in other countries. In addition, some departments may shut to ambulance attendances overnight. The drivers for these changes include the general trend to hospital regionalization, optimal utilization of the scarce emergency medicine workforce, and the need to ensure on-site provision of many other services to support the delivery of 21st-century care that can deliver optimal outcomes.