Boundaries hamper patient care especially for patients suffering from multiple and chronic illnesses because their care is characterised by a multiplicity of intertwining health problems and needs that themselves are increasing in complexity and in turn cause difficulties for effective service provision (Davis et al 2000, Plsek & Greenhalgh 2001, Wagner & Groves 2002, Wilson & Holt 2001). Further complexity is added as medical and drug technology and treatment advances not only for acute conditions but also for chronic diseases (Wagner & Groves 2002). Patients with chronic disease are generally simultaneously in the care of several specialists who are often geographically separated in numerous clinics providing different levels of care. In any one episode, this can lead to no one taking overall responsibility for coordinating the patient’s care, and hence patients are left ‘in the middle’, ‘in no-man’s land of care’ where care needs are not necessarily attended to as they should be (Kerosuo 2006:2).

Managing the boundaries in chronic illness is an urgent task. As advanced medical technology, pharmacology and treatment help people live longer, they require care for longer periods of time. How, then, can we improve the organisation of healthcare that requires clinicians with different clinical and professional orientations to collaborate, particularly where care relationships are characterised by individual clinicians delivering episodic care to individual patients? This chapter considers the impact of organisational, professional and practice boundaries on patient care, specifically the care of patients with multiple and chronic illnesses. Ameliorating the effect of boundaries means reinterpreting the outcomes of care, the role of the patient and the responsibility of treating clinicians that in turn mean creating new ways to conceptualise and deliver care within the context of organisation and organisations.

As with many of the health systems represented in this book, the Finnish healthcare system is segmented into primary, secondary and tertiary care sectors provided by different levels of government: primary and general hospital care by local municipal authorities; secondary and tertiary care by hospital districts and regions. Healthcare is further segmented by clinical specialties that have created their own clinical communities and their own specialty-specific care practices. Thus, patient referrals within and between clinical specialties and patient pathways within and between the different levels of care presage changes not only in the patterns of care, but also in clinical practice, clinician collaboration and organisational integration. In this chapter, we consider the organisation of patient care having regard to:

We use the concept of a patient care trajectory to understand how illness is managed. The concept allows us to construct a comprehensive view of care for chronic illness within the context of inter-organisational care, that is, care that is carried out by a multiplicity of independent, specialist ‘organisations’, including for instance that provided by multispecialties and multidisciplines where comorbidities exist in the patient’s presentation. The concept encompasses the temporal progress of events in caring for a person with a chronic illness. Strauss et al (1984:8) caution that a patient’s care trajectory describes ‘not just the physical course of illness but all the work that patients, staff and kin do to deal with the illness, and all the social/psychological consequences that encircle the illness course (its intrusiveness on relationships, temperament and so forth)’. The multiple illnesses that accompany patient comorbidities can involve different levels of care and different types of work that bring complexity to the division of labour and raise confusion about the coordination of care (Strauss et al 1984). Trajectories help us ‘see’ the care as one connected episode, and alert us to the problems, disturbances, tensions, gaps and innovation efforts that can occur in daily practice as they act as drivers of development and changers in intervention (Engeström 1987:174).

These trajectories of care can be constructed from observation, interviews and video clips that describe the actual care setting as well as from parts of patients’ health documentation. We focus on data from a number of case histories to develop our approach to care trajectories. The data are drawn from an ethnographic study of organisational activity – actions and interactions in routine and developmental practice carried out in two phases in the specialties of internal medicine that included cardiology, endocrinology, pulmonary diseases, rheumatology and nephrology. Phase one involved mapping the problems and discussing them in intervention sessions organised by the researchers in inter-organisational care for 16 patients and their providers from two healthcare centres, five secondary care hospitals and three university hospital clinics in Finland. Phase two involved creating and testing new collaborative tools as solutions for inter-organisational care fragmentation and involved 10 patients and a pilot group of 13 doctors and three nurses (Engeström et al 2003, Kerosuo 2006). We present the data of a patient case as an example of a trajectory developed through the research is presented in Table 5.1.

The care trajectory for Hugo depicted above illustrates the inter-organisational care for the multiple chronic illnesses that Hugo suffers, namely hypertension, high cholesterol, diabetes, degenerative arthritis and eye trouble (cataract). He is overweight and not able to move well because of arthritis. Hugo’s illness and care trajectory can be described figuratively, as in Figure 5.1.

In Hugo’s case, Figure 5.1 shows there were five care trajectories contained in one primary care clinic, one secondary care clinic and three university hospital clinics. The care of hypertension, high cholesterol and diabetes occurred together. Transitions from one provider to another are depicted with arrows. The broken arrows depict disruptions between the providers representing the different levels of care.

The problems emerging in Hugo’s care relate to communication disjunctions between the different providers. The first disjunction in communication occurred when clinicians at the health centre clinic transferred Hugo’s care for diabetes to the secondary care hospital. They expected the secondary care clinic to take care of the hypertension, elevated cholesterol and tests for blood consistency. The patient also expected that. However, the tests for blood consistency were not done at this clinic, and the patient did not know that it was important to have the tests for blood consistency done at least once a month.

The second and third disruption in the flow of information related to communication between the university hospital and the primary health centre clinic. The care document concerning the angiography for heart disease from the university hospital clinic to the primary health centre clinic did not reach the other end. Therefore, the primary health centre clinician lacked the information from cardiology about the follow-up for heart failure to be conducted at the primary health centre. The patient thought that the cardiology clinic did the follow-ups; he was wondering why it was taking so long for the cardiology clinic to give him an appointment, especially because he was afraid that he was going to have another infarct before receiving treatment.

The patient’s experience was that his overall care was not conducted as it should be. He was expecting to be operated on for his heart and his knees. He was having the same laboratory tests run in two different places and the providers kept changing his care. The professionals were quite surprised by the disjunctions in the patient’s overall care but thought they were not the only ones to blame for the disjunctions – the patient himself was also passive in his care. A possible ‘solution’ was for the providers to negotiate to eliminate the disjunctions in Hugo’s case. The patient himself was present during the first negotiation arranged by the researchers but not the second negotiation, conducted by the primary health centre providers and a specialist from the university hospital clinic.

The general opinion was that Hugo’s overall pattern of care was not run properly. The cardiology specialist commented that there were too many providers involved at the second negotiation: seven specialists treated the patient during the last episode at the cardiology clinic (in 1999), and two primary health centre clinicians and two secondary care clinicians treated the patient in primary and secondary care. The providers could not negotiate a solution to secure the overall care. One barrier related to the providers’ opinion that the patient had become non-compliant when in fact he did not know how the healthcare system worked. Beginning to solve the pattern of Hugo’s care involves drawing a map of the overall view of care, as in Figure 5.2. The locations of care are marked in boxes; one box represents one location of care. The connections between locations are depicted with double-headed arrows representing the long-term care relationships and single-headed arrows representing a single visit.

Hugo’s case shows that many boundaries crosscut the care of patients with multiple and chronic illnesses. Two types of organisational boundaries emerge: one is the organisational division between the levels of primary, secondary and tertiary healthcare, the other, clinical boundaries inside each level of organisation. The consequences of these boundaries for Hugo’s care were disruptions and gaps in the flow of information and the lack of an agent with an overall responsibility for care provision. How, then, do patients experience the effects of boundary divisions?