Continuity of care is particularly relevant for people who are unable to be self-sufficient, those who are terminally ill, older people suffering from dementia, stroke patients, and others with severe care needs at home. Care pathways are integrated care strategies that offer a means of achieving better integration among practitioners, community-based services, and other health and social care services. They can contribute to better continuity of care, whether simultaneously (where the services are all delivered at the one time) or sequentially (where they are delivered within a distinct period). See Chapter 1.
Care pathways have primarily been developed in the acute care sector. However, they may also be a promising instrument for long-term care and social care, by providing professional and organisational solutions tailored to the problems of those who need integrated long-term care, and those who move from cure to care. Care pathways are need-related at the group level, and are helpful in finding the best ways to match needs with services at the individual level, as well as in managing chains of care. They should not be seen as a ‘cookbook’ for healthcare – with prescriptive, step-by-step instructions – but rather as a set of appropriate, evidence-based activities and interventions for a specific user group.
Care pathways are instruments that can reduce improper access to hospital emergency services, inappropriate admissions and unplanned discharges. So, to a great extent, they can help avoid unmotivated and undesirable interruptions of care, which can damage people in need and be a waste of resources. Wasted resources are particularly common in situations where different professionals intervene without consulting each other, creating unnecessary and costly overlaps and confusion.
Care pathways can be a helpful instrument for managers committed to:
The Italian health and social care system is reducing the potential damage to people in need through its approach to stroke care. In Italy, there are more than 130,000 new strokes each year. All things being equal, this number will rise to more than 170,000 by 2008, because of the ageing population. In the case of stroke, prompt hospitalisation is recommended. Optimal care can be provided by a stroke unit or a hospital with a dedicated team, equipped with appropriate instruments and connected to a rehabilitation service. This method of acute stroke management has been proven to reduce mortality and residual disability and to increase the rate of patient discharge.
Source: SPREAD (2003) (see Web links)
A care pathway is an integrated strategy of care for a specific user group based on guidelines and evidence, where available. It determines locally agreed, multi-disciplinary practice (see National Pathways Association and Integrated Care Pathway Users Scotland, Web links) and outlines the optimal sequencing and timing of interventions (McQueen and Milloy 2001).
A prerequisite for care pathways is chain management. This concept reflects a strategy of:
Guidelines often underlie care pathways. Guidelines are commonly defined as indicators of a course of action that should be followed, or of what future policy will be – however, in fact, these concepts are complementary. Guidelines are primarily the responsibility of professionals, while chain management of managers and care pathways are a joint effort.
Sources: McQueen and Milloy (2001); Integrated Care Pathway Users Scotland (see Web links)
An integrated care pathway is not a substitute for professional judgement. When monitoring the way in which care pathways are applied, there should be some variance measured. This variance is necessary to individualise interventions to each client, based on his or her specific needs or idiosyncrasies. Variance may also be a consequence of organisational factors or different performance of the professionals involved.
Care pathways serve multiple goals for all the stakeholders involved, such as clients, carers and managers in the health and social sector, public and private service providers, voluntary organisations and non-government organisations (McQueen and Milloy 2001; Integrated Care Pathway Users Scotland, see Web links).
Care pathways serve the needs of clients through:
Care pathways serve the needs of professionals and managers through:
As mentioned earlier, care pathways have primarily been developed in acute health care and address sequential linking, co-ordination or integration. In long-term care, only a few examples of this type of care pathway exist (such as in stroke and palliative care), and many of the ‘key characteristics’ (noted opposite) are still far from being met. However, in some countries, public and private bodies have to take research and implementation into account when putting together appropriate solutions based on a good balance between cost and effect. These solutions relate to the client’s progress from hospitalisation to residential and family care. In the meantime, the term ‘care package’ is regarded as more appropriate in some countries, because the specific care plan is drawn up according to the requirements of each situational need.
The Dutch Heart Foundation has developed a model for a stroke service, as well as a workbook for those who want to develop such a service. The process is described in three phases:
In each phase, specific services have a role in achieving the objectives of the particular phase.
At present, 69 stroke services exist across the Netherlands. In each stroke service, at least one hospital and a nursing home participate. In three-quarters of cases, a rehabilitation centre participates too, nearly always alongside the home care organisation and, in 73 per cent of cases, the general practitioner.
Sources: Carlier et al (1999), Verschoor et al (2004)
The Kingshill Research Centre in the United Kingdom developed an integrated care pathway for dementia. It consists of five stages:
Each stage includes the evidence available for that part of the care process, and a flowchart identifying best practice. Each stage also includes examples of essential paperwork, audit and education.
Source: Naidoo and Bullock (2001)
Another model of using care pathways is to consider the responsibilities at local or regional levels. A single entry point, as well as distinct roles of general practitioners, social workers, and other professionals who may have a role as gatekeeper to the system, are prerequisites to guide people through the system (see Fig 3 below).
Fig 3 is a model for the sequence of multiple decisions that are to be made along three lines throughout the decision-making process. The left-hand column relates to the healthcare decision process. The right-hand column represents the social care decision process. The middle column represents the integrated care line. This can start as an integrated process from the beginning, or it can be suggested or promoted by the client’s general practitioner or social worker, as soon as they understand that the complex needs requires integrated care.
Access to services and care paths at local/regional level
Fig 3 outlines three different ways in which the care system can be accessed. It starts from the point that the client enters the system, moves on to the integrated needs assessment, which is used to find out what can and should be done, and finally shows actual service delivery. The client’s needs must be fully considered, and the care that is provided should be comprehensive. Care providers and authorities have to be explicit about which steps they will follow.
Each older person will follow a different pathway and move among different providers, according to the nature and the development of their needs. However, the preferred situation is for the care providers to move towards the client. Whether this is possible depends on the system: how far professional care in the community is developed, and how far institutional services go in providing outreach activities.
It is important to think in terms of location and interfaces. ‘Location’ refers to the place and setting in which the care plan is implemented (such as the home or hospital) and ‘interface’ refers to the collaboration and links between the places and settings in which the care plan is delivered. Fig 4, overleaf, is designed to aid thinking in terms of both these dimensions.
In Fig 4, the term ‘day care’ includes formal and informal services, such as day centres and outpatient care. The map identifies at least six critical areas for better defining need-related pathways. Each one is different because of the location in which the care is offered and because of the nature of its interfaces. The way in which these locations and interfaces are connected – by means of a care pathway – depends on the characteristics of the particular need group or user group, as well as the welfare system in which the system is operating.
If a manager is committed to organising solutions for people moving through different options of care – for example, from more intensive to long-term care – their options should be flexible and based on personalised solutions.
Integrated care pathways can be developed by following a series of steps, outlined in the checklist below, adapted from McQueen and Milloy (2001), Integrated Care Pathway Users Scotland (2003), Zander (2002):
Each of these steps is described in detail in the following section:
This includes raising the idea, convincing participants, setting the boundaries, choosing the site, planning the activities, appointing the team and its roles, and clarifying the involvement of clients and carers.
The population can be defined in terms of three factors: problems that are most prominent, diagnoses, and location. This definition determines to a large degree the character of the pathway that is to be developed – whether it is clinically oriented, disease oriented, oriented on well being, oriented on carers’ needs, and so on.
Assess the information to ensure that it is relevant to your specific circumstances and to the specific population. The choice of the population will also influence to what extent evidence can be found. Summarise the evidence and make it available to the team members. Make sure that standards are agreed upon. Evidence that is scientifically sound is often not available in the fields of long-term care and social care. Where this is the case, it may helpful to distinguish various levels of evidence, from sound scientific research to consensus among peers.
The data illustrate current practice and establish a baseline for future evaluation of the pathway’s impact. Only collect data on the particular client group or population and, where possible, include economic and organisational data.
This practice can be recorded in a flow chart – a graph depicting the order of steps in a particular process. Record all improvement ideas while drawing this chart. This so-called ‘process mapping’ should not go too much into detail. For further guidance, see NHS Modernisation Agency (2003).
Key indicators are milestones against which one can measure a client’s progress along a care pathway. These indicators should be based on evidence with respect to the stages where the clients should be in their care. Indicators:
Based on the current process analysis, the pathway should be modified and supported by the team and organisation involved, as well as by the clients and carers. Where decisions are unclear, rules should be established, so that policies are put in place for every eventuality. The pathway needs to be constructed as a multi-disciplinary plan and record of care that includes all key information, so make sure all the relevant and required documentation and records are taken into consideration. The basic idea of a care pathway is illustrated in Fig 5, which presents a global map of the decision-making process, together with its rationale. It shows how different pathologies (in this case, stroke) can have similar decisional processes that lead to the drawing up of personalised care pathways.
There are two types of tools available. The first is ‘content tools’, which add precision and depth, and enable analysis of inclusion and exclusion criteria, clinical outcome progressions, critical indicators, guidelines, algorithms, decision rules (see Step 7), protocols and practice support information. The second type is the ‘action tools’ connected to the contents of the care pathway, such as assessments, progress notes about variance, client and family educational materials, and forms (Zander 2002).
When the draft is developed, review the representatives of all relevant disciplines and professions, as well as clients and carers. The basis of this review should be the evidence on which the pathways are based. Pilot the care pathway, whenever possible.
This enables you to involve clients, to be explicit about the match between your services and their expectations, and to answer some of the common questions that they undoubtedly will have. It is important to use plain language and communicate clearly. It is also helpful to test the care pathway among professionals for completeness and clarity to those who were not involved in developing the care pathway.
Agree a timescale. Remove all previous documentation, agree the dates for reviewing the care pathway, and allocate enough time for instruction, training and support.
The Italian guidelines for stroke prevention and treatment are evidence-based, and may constitute the key elements of a stroke care pathway (synthesis, selection and adaptation of the Stroke Prevention and Educational Awareness Diffusion guidelines (SPREAD 2003, see Web links). They highlight the fact that scientific knowledge can be shared at an international level and simultaneously adapted to the particular context, situation (welfare and delivery system) and specific country, where they can be put into operation.
The list below shows recommendations for care after a stroke. Each recommendation relates to the point of the corresponding number in Fig 5 below.
Source: SPREAD (2003). (See Web links.)
* Numbers relate to corresponding points in Practice example: Guidelines for stroke prevention and treatment, pp 90–91
There are a number of advantages to the client and their family and carers playing an active role. It enables them to assess how far the care pathway meets their needs and preferences, and to simply learn from experience how better to manage their condition, identify the ‘key person’ who they can rely on, and share an informed contract on the care pathway. The contract should include the client’s name and details, the service provided, details of the agreed goals, actions, timeframe, expected outcomes, and commitments. It should provide space for signatures of both parties and the date.
Involving the client’s family or carers in developing a care pathway, and in the care pathway itself, is very important. Consider their roles in sharing decisions, allocating responsibilities and resources, and in managing care pathways themselves. This can be better understood in terms of particular examples, such as older people with cognitive deficits who live with relatives acting as carers, and suffer from the stress that goes hand-in-hand with care-giving. Helping carers by involving them in strategies to overcome their stress can, in the long run, be fundamental in providing better assistance for the older person who is being cared for.
Care pathways are about continuity of care. It is useful to distinguish between three types of continuity:
(Haggerty et al 2003)
To ensure information continuity, care staff should take part in developing and implementing care pathways. However, specialists in information flows, records and monitoring instruments also need to be involved. Management continuity requires those involved in integrated care to have special competencies, as well as a coherent view on care and the care pathway that is relevant to the particular client. Relational continuity also requires continuity of staff, and this needs to be deliberately planned, taking into account work and salary conditions, and other issues such as motivation of staff and in-service training.
The case or care manager plays an important role in assuring quality and effectiveness in the integrated care processes, and in working according to care pathways. By assessing, planning, intervening and evaluating, they provide a continuous process of matching care with the changing needs of the client. They also provide problem-solving and decision-making support to their professional colleagues (Zander 2002). Because health and social care professionals are so crucial to the implementation of a care pathway, they too need to be actively involved in the development. All the staff involved need to have some expertise in monitoring systems, and in all the necessary administrative activities, so that they can monitor the care pathways.
These administrative activities would include completing particular forms that address needs evaluation, ADLs, and environmental factors.
Monitoring is an essential part of working with care pathways because it provides a constant review of the pathways of the clinical choices and their impact on the use of resources.
To monitor and evaluate the process and effectiveness of the pathways, it is necessary to have practical instruments that identify the total needs of the person, before and after the intervention. In other words, ‘evaluation’ is a comparison that enables differences and changes to be measured at the different stages of the care plan.
So it is important to use validated measurement instruments that compare the changing situation over time – both within one pathway, and between one pathway and another. This means that managers must be aware of using output indicators, which measure process performance (such as delivery index or cost), and outcome indicators, which measure the benefits to the client in all the different domains (such as body functions and structures, activities and participation, environmental and personal factors).
The manager needs to ensure the following elements are in place:
There are two main methods for improving outcome evaluation: managing absolute outcomes and managing relative outcomes (Vecchiato 2002). The absolute outcome option measures the state of a person referring to different parameters over time (for example, organic, functional or cognitive parameters). It is useful to link the seriousness of the need to a specific care intensity, which can then be guaranteed in the care pathway. The relative outcome option measures the differences between the client’s health and life conditions before and after the intervention. The greater the relative outcome, the more effective the impact of the care pathway.
The manager needs to ensure the following elements are in place:
The greatest challenge is to develop a set of outcome indicators that reflects a comprehensive assessment of the person with a complex need pattern. These indicators need to give an overall picture of the relevant domains of individual functioning, and to put the objectives of the intervention into operation, so they need to be monitored, and interventions and objectives may be adapted or altered.
The comprehensive geriatric assessment has become synonymous with geriatric practice. This assessment includes an evaluation of the older person’s physical and mental health and functional and social status. The polar scheme is a new method conceived by the author together with a multi-disciplinary team (Vergani et al 2004), to represent the client’s condition, through the so-called ‘polar diagram’ (see Fig 6).
The polar diagram is consistent with the international classification of functioning and health (World Health Organization 2001), and shows the subject’s scores on the evaluation scales (arranged radially inside the circular area) during the care pathway at different times. The outer edges of the figure denote the optimum condition. This enables gaps between the optimum condition and the actual recorded scores to be easily identified. This tool can be used to monitor the condition of the client, and to evaluate the changes in the outcomes. The clinical dimension refers to scientific evidence for supporting appropriate decisions. The organisational contents of guidelines refers to the solutions for sharing the decisions, the responsibilities in delivering the care process, and the resources for reaching expected outcomes.
The polar scheme consists of a circle divided into three sectors. Each sector represents the principal domains covered by the comprehensive geriatric assessment:
Within each domain are ‘rays’ by which the scales are rated. These may vary, depending on the person under investigation. The outer part of the circle shows the individual’s condition at their best. The centre shows their condition at its worst. In brackets, each scale is described with its minimum and maximum value.
The cognitive and behaviour domain includes the mini mental state examination (MMSE), the clinical dementia rating (CDR) scale, the neuropsychiatric inventory (NPI) and the Cornell scale. The physical and functional domain includes the activities of daily living (ADL) scale, the instrumental activities of daily living (IADL) scale, and the cumulative illness rating scale (CIRS), both for severity and co-morbidity. The socio-environmental domain considers the caregiver burden inventory (CBI), the responsibility scale (SDR), the index of care coverage (ICA), and the level of protection in life space (LDP).
The different shaded sections of the diagram indicate different measurements in time. The shades of the scales indicate the three observational and measurement areas for evaluating outcomes:
Source: Vergani et al (2004)
The different values represented in the polar diagram can facilitate the integrated evaluation and choices of professionals involved in the care pathway together with the client and his or her carers. These evaluation tools are described in use in the practice example below.
Maria is a 73-year-old woman. She is retired (she used to work in a factory) and she came to the attention of the health service in October 2001. During the past two years she has experienced memory problems and behavioural changes, resulting in loss of autonomy in her daily life (CIRS severity: 2.6/5; CIRS co-morbidity: 5/13; MMSE: 14/30; Cornell scale: 19/38; NPI: 69/144).
Maria has serious problems with mobility that lead to falls and accidents and she cannot eat without help (CDR: 3/5; SOB: 15/30; ADL: 1/6; IADL: 0/8).
Following a clinical examination, Maria is diagnosed with severe vascular dementia (according to the NINDS-AIREN criteria) and is prescribed medication to treat her associated behavioural problems. Maria lives at home with her daughter, who works full-time during the day (ICA: 15/24).
She is also supported by an informal network of people. Neighbours help with meals and therapies, but for most of the day she is alone at home. This is a worry for her daughter, whose working performance and relationships have been affected (CBI: 65/96). Maria’s low income does not allow for private home assistance or temporary admittance to a nursing home, and social services are not aware of her case. Her daughter feels strongly that her mother should stay at home with her.
Social services are contacted to evaluate the family’s income and investigate the possibility of home care support. They arrange for her to receive home help.
By January 2002, Maria shows an improvement in her attention capacity (MMSE 17/30). Her behaviour has also improved (Cornell scale: 13/38). Her daughter reports a reduction in the number of confused episodes and psychological and neurological anxiety, and Maria is sleeping throughout the night (NPI: 27/144).
Aspects of Maria’s disability persist, but there are improvements in eating unassisted, due to socialisation interventions (ADL: 2/6; IADL: 0/8). Her mobility problems remain, but she has not had any falls since the process started and there have been improvements in her daily living activities and environmental factors (CIRS severity: 2.6/5; CIRS co-morbidity: 5/13; CDR: 3/5; SOB: 15/30). Her daughter expresses an improvement in her quality of life too (CBI: 56/96). The therapy remains unchanged.
By July 2002, Maria makes more progress (MMSE: 19/30; Cornell scale: 6/38). Her behavioural changes have disappeared (NPI: 14/144), although her loss of autonomy remains (ADL: 2/6, IADL: 0/8, CDR: 3/5; CIRS severity: 2.6/5; CIRS co-morbidity: 5/13). The daughter feels less stressed (CBI: 37/96). As a result of comprehensive integrated care combining medical, pharmacological, nursing and social support, Maria’s situation has vastly improved. This particular treatment is considered complete and will be replaced with a new care plan.
There are a number of common barriers to implementing care pathways in integrated care. These include:
There are a number of supports or strategies that facilitate the creation of care pathways in integrated care. If health and social care services take into account the different organisational configuration of services, this can make a big difference in reducing inequalities. For this reason, access rules to different care pathways (for example, based on means testing) should be considered and revised and/or improved for a better personalised care. Highlighting the costs of the decisions may be helpful in prioritising interventions.
Above all, the integrated needs evaluation is the key to appropriate care. However, this must be followed by the definition of expected results, which must be measurable in technical terms, and the client and their family or carers must be able to understand it. It is important to discuss with them the benefits and drawbacks of the possible interventions.
Outcome evaluation is essential for recognising which results are due to the interventions provided, by comparing the situation before and after intervention. Outcome measures consider the benefits and improvements and the well being of the client and their family or carers.
At the level of professional processes, managing integration requires protocols (‘how to do it’), adequate assessment procedures and instruments, inter-professional communication, referral systems, and delivery systems, including co-ordination of activities carried out by different services providers, transfer routines and monitoring routines.
At the organisational level, there need to be agreements on collaboration (for example, regulation, financing, division of tasks and responsibilities), as well as definition of care packages, planning of adequate levels of service capacity (for example, places in rehabilitation units) and human resources management.
At the policy level, a balanced system of services (including regulation and financing) needs to be in place. For example, a reduction of long-term stay in hospitals will require extra capacity of community services.
Finally, an holistic approach to organisational thinking is essential. Management thinking has viewed the organisation as a machine and believed that considering parts in isolation, specifying changes in detail, battling resistance to change, and reducing variation will lead to better performance. In contrast, complexity thinking suggests that relationships between parts are more important than the parts themselves, that minimum specifications yield more creativity than detailed plans. Treating organisations as complex adaptive systems allows a new and more productive management style to emerge in health care.
(Plsek and Wilson 2001).
This chapter has aimed to highlight the managerial and professional duties needed to transform the recognition of needs together with the available resources into personalised care pathways. It has led the reader through the decision-making process, including:
Care pathways can offer a solution that allows us to look at the person as a focal point within a map. Within that map are managerial and professional figures and carers, who are committed to reaching good outcomes at a reasonable cost, continuity of care and – most important of all – the overall well being of the patient and their carers.
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www.icpus.ukprofessionals.com/ICPs.html – website of the Integrated Care Pathway Users Scotland.
www.spread.it – website of the Stroke Prevention and Educational Awareness Diffusion Collaboration (SPREAD), with Italian guidelines for stroke prevention.
www.the-npa.org.uk – website of the National Pathways Association, a network of professionals interested in developing, sharing and promoting the use of care pathways.