Health Services Management Research > Volume 21, Number 4 > Pp. 228-235

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Management of complex chronic disease: facing the challenges in the Canadian health-care system

Peter Tsasis ^*  and Jatinder Bains 

* School of Health Policy and Management, School of Administrative Studies, York University; Bridgepoint Health/Bridgepoint Community Rehab, Toronto, Ontario, Canada

Correspondence to: Peter Tsasis Email: tsasis{at}yorku.ca

This paper discusses the challenges that those living with complex chronic disease present to the Canadian health-care system. The literature suggests home care and the management of complex chronic disease can together ease many of the present and future pressures facing the health-care system in dealing with this new health-care phenomenon. A review of current literature and dialogue with key informants reveals that the current level of investment and the present policy environment are not sustainable to support the health-care system. In this paper, changes to policy and resource allocation to the home care sector are suggested to help manage complex chronic disease and thus improve the effectiveness of the Canadian health-care system. A case is made for a reorganization and increased commitment to the home care sector for a more efficient and patient-centred health-care delivery system.

	A rise in complex chronic disease

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We have shifted to an era of complex chronic disease in Canada. Complex chronic disease comes about when an individual has more than one chronic disease simultaneously; for instance a patient who has both heart disease and diabetes. Often, the treatments for each disease and/or the disease themselves negatively impact each other, thereby exacerbating the difficulties associated with living with a chronic illness.

According to the Canadian Community Health Survey, almost 80% of Canadians living in the province of Ontario over the age of 45 have a chronic disease and of those, approximately 70% suffer from two or more chronic conditions.¹ With an ageing population, the numbers of frail elderly suffering from chronic illness will only increase in the coming years. This translates to a potential increase in morbidity, mortality and economic cost for the health-care system.

The estimated burden of chronic illness in Ontario amounts to just over 55% of the total direct and indirect health-care costs and is estimated to rise.^2,3 Given the limited resources in health care, spending and the rising demand for services by an increasingly ageing population experiencing complex chronic disease, there is a need to find new models of delivering health-care services to this population. In addition, with the proliferation of new technologies in health care and the shift to ambulatory care, home care is increasingly becoming a discharge destination. However, the current organization of home care services alone is not sufficient to take full advantage of the benefits of this shift. What is required is a service delivery system, which would allow patients with complex chronic diseases to transcend across a continuum of services, keyed to varying levels of independence and illness severity. Such a system would enable, for example, the frail elderly to remain at home and be hospitalized only for acute episodes of illness, often of short duration, rather than being cared for permanently in an institutional setting. The challenge is how do we focus and redesign services for the patient with complex chronic disease so that resources are utilized efficiently and allocated based on patient care needs.

	The need to reform service delivery: service integration

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Historically, continuity of care among health-care facilities has not been well developed in the Canadian health-care delivery system. The system has tended to be built largely around acute hospitalization. As a result, services within the health-care system are fragmented and coordination is poor. In fact, gaps in integration of services have been shown to be a major problem in the delivery of comprehensive care.⁴ For those with complex chronic disease who require integration of service delivery in response to their multiple and changing needs, they experience a lack of a number of things: care coordination, active follow-up to ensure the best possible outcomes, and adequate training to manage their illness.⁵

Overall, Canada ranks last in a seven country comparison of chronic care delivery.^6,7 This is attributable to a system focused on acute care, fragmented delivery and a lack of patient-centredness, among other factors.⁸ Key areas that are attributable to Canada's failing grade include: providing chronic disease patients with plans to manage care at home; routinely using multidisciplinary teams to help manage patients with chronic disease; and preparedness to serve patients with multiple chronic diseases.⁶

	An anchor

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To meet the health-care needs of a growing population of chronic disease patients and to improve the economic sustainability of the health-care system, there needs to be more focused attention on chronic disease prevention and management. The acute, episodic focus of our health-care system is no longer effective or viable in an era of chronic disease. Greater effort needs to be put in service integration between lines of service, such as primary care and specialized care, while incorporating social aspects of care into the medical model and integrating them under a shared system of governance. The patient's home can be the anchor for such a system of care.

Presently, most public health-care efforts approach chronic disease prevention and management through fragmented programmes that are disease or risk factor specific. The benefits of an integrated framework include that multiple diseases can be addressed simultaneously, thus freeing limited health resources to be used towards improving programme sustainability as opposed to being used for programme duplication. Furthermore, service integration encourages a more holistic approach to the multidimensional health needs of the patient and liberates the patient from having to undergo the same medical examinations every time he/she sees a different health-care provider, resulting in reduced waiting time in service.

By placing the patient in his/her home at the centre of the health-care service delivery system, and drawing attention to the alignments and integration that must exist between inpatient and outpatient services, one can rethink the system from the standpoint of the patient's needs, accommodation and activities. As a result, quality becomes a matter of aligning support systems and community health-care resources to enable the patient to attain the highest degree of personal autonomy in the patient's natural environment.

	The chronic care model – home care first

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Currently, the most widely used and studied model for the delivery of chronic disease management and prevention activities has been the chronic care model (CCM), which is based on the interactions between ‘informed/activated’ patients and a ‘prepared/proactive’ health-care team.⁸ Informed/activated patients are those who understand their illness and are empowered to engage in self-management. Prepared/proactive teams are the teams that have the right information, tools and personnel for the treatment of the patient. Key elements of the model include patient-centredness, collaborative goal-setting and problem-solving, and sustained follow-up. CCM evidence shows that this approach both improves outcomes and decreases costs.^9–12 The CCM can be adapted for use in disease-specific programmes or as an over-arching framework for multiple chronic illnesses.

Canadian policy-makers have modified the CCM to reflect prevention and health promotion activities. The resulting framework, referred to as the Expanded CCM, includes population health components such as the social determinants of health and community participation. This enhanced model is more useful in the context of chronic diseases because of the importance of prevention and management in delaying chronic impairments. In addition, because this model recognizes the influence of social and economic factors of health, it encourages a more holistic approach to health care.

In both models, self-management is a key element. Self-management involves providing basic information, emotional support and strategies for living with chronic illness to patients in order to enable them to take care of themselves outside of the institutional settings, i.e. in their home. By using a collaborative approach, providers and patients work together to define problems, goals and create treatment plans. This aspect of the model is important because all patients make decisions and engage in behaviours that affect their health. Through self-management, the patients become empowered and prepared to manage their own health. This fosters interaction between patients and their providers. After all, 99% of self-management of chronic disease occurs in the patient's home.¹³

However, in a survey of 66 chronic disease management programmes in Ontario, it was shown that <30% of these programmes involved any collaborative approach with the patient and family in treatment and care.¹⁴ This means the self-management portion of the CCM, which intends to produce ‘informed/activated’ patients, is lacking, creating a gap in understanding and interaction between the patient and the health-care team.

The benefits derived from implementing a model like CCM can be enhanced when implementation occurs in a context that is aligned with the processes and objectives of CCM. In fact, one of the critical elements to CCM's success is integrated services, since integrated services lead towards rethinking the health-care system from the patient's needs instead of the health provider's needs. This leads to process improvement which is the only factor in the model that is directly linked to clinical outcomes, highlighting the importance of reforming the health-care system through integration to cater to the new frontier of complex chronic illness.¹⁵

Chronic disease patients have the potential to benefit most from integrated health care because their illnesses are long term and require ongoing support, which means chronic disease patients have more frequent contact with the various levels within the health-care system. The number of hospitalizations and physician visits are higher for those with a chronic illness and increase progressively for those who have two, three, four or more than five chronic conditions.¹⁶ Promotion and prevention, and an informed and activated patient, can help manage this intensity. Integration of care across the health-care continuum can benefit patients by ensuring no one is left to ‘fall by the cracks’ due to an inadequate transition of care between levels of care and providers. Integration, thus, provides a supportive context for the CCM to be implemented successfully.

	The case for leading the way with home care

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The nature of complex chronic disease requires health-care services to be completely integrated and coordinated beginning at the level of home care. Home care services must be responsive to the fact that patients with complex chronic diseases will have episodes of acute illness and may be required to be moved to an acute care facility for immediate treatment, as well as episodes of wellbeing in which they may need to be reintegrated and supported into their community and home.

Today, with advances in medical technology, home care programmes have proven to be just as efficacious, and of comparable quality, to institutional programmes.^17,18 In addition, home care programmes have led to improved patient satisfaction in the following areas: (1) relationships with health-care providers; (2) the admission process; (3) comfort and convenience of care; (4) and overall care.¹⁹ This is without the benefits of any significant investment into the home care programme. Providing home care is also less costly than providing institutional care in a hospital setting.¹⁷ A study of patients with chronic obstructive pulmonary disease found that home care represented <20% of the cost of a comparable hospital stay.²⁰ As many of the problems associated with chronic disease are preventable and require ongoing management, home care is not only viable, but potentially more effective than care in an acute setting.

Furthermore, patients experience reduced stress and discomfort when they are able to remain at home in their community and within their established social networks. Older adults prefer to remain in their homes and in their communities as well. More often than not, for them, home is more than physical shelter; it also has implications for their self-identity, autonomy, psychological health and sense of security.^21,22

	Non-medical determinants of health

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It is documented that non-medical determinants of health, such as poverty and housing have at least as much impact on health as health care.²³ For the patient to take responsibility for his/her own wellbeing and care, the patient's home must have the bare necessities of running water, sanitary facilities, heat, a telephone, food and clothing. Studies of diverse populations demonstrate that poorer people tend to be less able to manage their chronic disease.^24,25 This is likely due to the fact that when patients receive care in an acute setting, their non-medical health determinants are not visible and thus the whole spectrum of needs that people with complex chronic disease have are not taken into account. In fact, few practices assess patients for psychological, social and economic barriers to care.²⁶

	The ultimate in patient and family centredness

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Through links within the community, home care providers can convey information and provide the resources vulnerable patients need in order to benefit fully from their treatment. Health care provided in the patient's home is, by design, more patient-focused. Social and economic conditions become apparent to providers during the provision of health-care services at home. This enhanced awareness and knowledge of each patient's unique circumstances allow providers to deliver holistic care that takes into account the social and economic context of each patient. In other words, holistic care that caters to the individual as a whole prevents avoidable adverse outcomes, such as: falls; bed sores; medication errors; urinary tract infections; promotes early treatment; and fosters better disease-management interventions when the social dimensions are included, along with health.²⁷

In addition to improving patient outcomes, the development of home-care programmes presupposes greater rationalization and coherence between lines of service and all the components of health and social services for chronic disease patients. According to the literature, the achievement of true integration in the health-care system requires three types of integration: functional, physician and clinical.²⁸ Clinical integration is an umbrella concept that refers to continuity and coordination of care as well as disease management. Although progress has been made in the pursuit of functional integration, insufficient attention has been paid to the provision and coordination of services in providing a more holistic and personalized approach to the chronic disease of a patient's multidimensional health needs.^29,30 This is surprising considering that a focus on the needs and preferences of the individual and the provision of services at home are two of the primary strategies for the development of an integrated health-care system.²⁹ This is particularly pertinent to those suffering from complex chronic diseases, because they require ongoing health-care services to manage their illness, and thus they are more likely than any other patient group to experience gaps in care between providers, health facilities and lines of services, i.e. primary; specialized; ultra-specialized care. Thus, home care is a necessary first step to truly manage complex chronic disease and to contribute to efforts in moving forward towards integration of health-care services.

Currently, home care in Canada represents a static 5% of the total health-care budget and remains narrowly focused on acute care. The 2004 Health Accord 10-year plan specifies the coverage of home care services for short-term acute needs, short-term acute mental health needs and end-of-life care. Home care services, including personal support services and care for those with complex chronic disease or physical disabilities are not addressed in the Romanow Report; a 2002 Commission on the Future of Health Care in Canada recommending sweeping changes to ensure the long-term sustainability of Canada's health-care system. Furthermore, they are not included in the Canadian government's coverage plan of 2004, even though the chronically ill represent those who could potentially benefit most from home care. The decision to focus improvement efforts on acute home care services reinforces the system preoccupation with acute care. Currently, up to 50% of referrals to home care at Bridgepoint Community Rehab (a facility within Bridgepoint Health, one of Canada's largest integrated rehab centres for the treatment of complex chronic disease) are for the treatment of acute conditions.³¹ Those with chronic illnesses, as a result, continue to face fragmentation and variations in the provision of home care depending on the province in which they reside – that is, if home care is available to them at all.

	Interdisciplinary teams support effective home care

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The nature of complex chronic disease requires health-care services to be completely integrated and coordinated to the level of home care. Integration may be accomplished by the supply of services by various health-care professionals in the form of multidisciplinary teams or by coordinating lines of service such as seen in shared care. In either case, providing patients with the health care they need when they need it and ensuring that a seamless transition through the health-care system exists is of essence. This is even more important for patients with complex chronic illness who often interact with several providers at once, which in many cases leads to conflicting advice, multiple prescriptions that may adversely interact, duplication of diagnostic tests, and unnecessary service utilization.³²

Teams have long been heralded as the key to creating links between providers at the various health service levels and, as a result, multidisciplinary teams are common in current clinical practice. Best-practice chronic disease prevention and management interventions in the provinces of British Columbia, Alberta and Ontario utilize multidisciplinary teams in their delivery of health-care services for chronically ill patients.⁸ Multidisciplinary teams are characterized by clearly defined professional identities with team membership as a secondary factor, hierarchical leadership and contribution of expertise in relative isolation from one another.³³ Thus, multidisciplinary teams do not, in fact, ‘work together’. They provide care to the same patient, so there is a sense of shared responsibility. However, the providers do not typically interact with one another or discuss the patient and his/her needs. Misinformation and gaps in care are real possibilities.

Interdisciplinary teams, on the other hand, share information and work interdependently.³³ In this context, leadership is task-dependent with tasks defined by patient needs. Synergies are enhanced in interdisciplinary teamwork as opposed to multidisciplinary teamwork because the former is able to achieve more than the sum of the individuals involved. This phenomenon is attributable to the processes of sharing information and working interdependently, which create a unique forum for creative problem-solving. Rather than having many individuals working in silos to make decisions for the patient, a team of health-care professionals work collaboratively with the patient and family to provide care, regardless of setting.

Evidence from 14 systematic reviews, 33 randomized trials and six other studies demonstrates that multidisciplinary teams providing care for chronic disease patients improve patient satisfaction, reduce health-care resource use and have a minimal impact on quality of care and clinical outcomes.³⁴ This positive impact on patient satisfaction and health-care resource use, in addition to improved clinical outcomes, may be enhanced through the use of interdisciplinary teams, particularly when used in home care. Interdisciplinary teams providing services to chronic disease patients in their home environment increase patient-centredness. Collaboration and coordination through interdisciplinary teams leads to better decision-making and less redundancy in medical testing, thereby saving substantial costs.³⁵ Furthermore, interdisciplinary teams providing care for patients in their homes may also lead to more visible results in quality of care and clinical outcomes. There is also preliminary evidence to support the notion that interdisciplinary care leads to increased access to health care, improved outcomes for those with chronic diseases and enhanced patient safety.³⁵

For instance, the success of Geriatric Teams at the John Hopkins Home Care Group (JHHCG), an American organization providing a full range of home health services throughout Maryland, demonstrates that regular and effective care coordination is achievable in the setting of home health care.³⁶ These teams, consisting of a physician, nurse, physical therapist, occupational therapist, speech and language pathologist, and social worker, are located in one location and meet daily to discuss patient progress, medical issues, rehabilitation, social and psychological issues, and family dynamics. The result of such meetings is that care is coordinated and seamless, with all providers communicating the same messages to the patient. JHHCG found that the interdisciplinary team process was accentuated when problems arose that required broad-based interventions. This involved examining each of the patient's problems from the perspective of each team member so that solutions were multifaceted were reinforced one another.

It is thus important to note that successful coordination of care across a continuum of health-care services may depend less on directives than on the quality of relationships between health-care professionals providing that care. Furthermore, the concept of service plan coordination must be recognized and agreement on treatment protocols must be reached by the team of health-care providers collectively treating the patient. Treatment modalities of protocols should take into account the complexity of chronic disease, the diversity of needs by the patient and should focus on providing services in the patient's home setting whenever possible.

Although the JHHCG provides a successful example of interdisciplinary home care from the USA, not only is interdisciplinary home care for the chronically ill not currently available in Canada, but it is also not even readily accessible for the primary health care needs of the general population. Only 32% of physicians in Canada are involved in teamwork, compared with 81% in the UK, and only 50% utilize other providers to help manage patients with multiple chronic diseases, compared with 90% in the UK and 82% in Germany.³⁷ Overall, most Canadians do not receive their care or service through a team of health-care professionals, let alone in a home-care setting.

Canada's health-care infrastructure does not currently support interdisciplinary work. Health-care providers in Ontario are compensated primarily through fee-for-service. Team work requires supervisory, consultative and administrative activities that are time-consuming and detract from the number of patients seen and, ultimately, the amount of care delivered. This translates to losses for providers. Incentives are required in order to encourage interdisciplinary team work, such as combining aspects of fee-for-service and capitation, switching to a salary model, or including bonuses tied to health-care outcomes.³⁸

A major hindrance to home health-care delivery by interdisciplinary teams is that most providers are oriented towards providing acute care and are accustomed to working independently. The old management and governance structures embedded in our health-care system still emphasize departmental silos and protection of ‘turf’. Furthermore, they rely on patients to initiate interactions and place the emphasis of treatment on symptoms not prevention, management, or quality of life. Traditionally, we are also not accustomed to sharing information with other providers and using team synergies to enhance patient care.³⁹ Addressing this gap requires providing better interdisciplinary education and training that emphasizes collaboration and communication for students entering health-care professions. It is also important to blur the boundaries of health-care service provision so that patient care is not limited to a hospital setting and providers are more open to the viability of home care. In addition, interdisciplinary teamwork has the potential to not only improve patient care and system sustainability, but it also benefits care-givers and providers by helping to better manage increasing workloads in institutional environments.³⁵ Despite these benefits, most professional development programmes are not currently focused on training providers to work together to enhance patient care. Initial steps required to achieve reform in the education of providers include incorporating interdisciplinary team competencies into existing curricula and developing links with organizations that can provide clinical placements and hands-on training in interdisciplinary work.³⁵

Steps towards promoting interdisciplinary education are being taken in Canada. In fact, in 2003, part of an $85 million fund established for health human resources was set aside for interdisciplinary education.³⁵ The goal is for a variety of health-care providers to train together and learn to share in problem-solving and decision-making.

Home health-care agencies are hailed as an ideal environment for teaching interdisciplinary care.⁴⁰ This is because home care is an area where coordination and collaboration are particularly important for care quality and for producing positive outcomes for vulnerable and needy populations, including those with complex chronic disease.

	Conclusion

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People with chronic illnesses have a host of complex conditions that range from functional to cognitive and require different types of care provided by experts from ambulatory care, acute care and home care. What is required is greater support and coordination between ambulatory and specialized services. Integrating specialized services to home care settings through interdisciplinary health-care teams can facilitate and increase the handling of difficult cases.⁴¹ The nature of complex chronic illness requires that health-care services be integrated and coordinated to the level of community care so that the patient can move effortlessly through the different levels of care, if the need arises. This level of coordination requires a movement towards system integration. In Ontario, the Local Health Integration Networks (LHINs) are taking on the task of integrating services in each of their geographic areas with the goal of increasing patient-centredness, efficiency and accountability. The LHINs have been established by the government of Ontario as community-based organizations to plan, coordinate, integrate and fund health-care services at the local level. The LHINs are thereby creating a health-care system context that is ideal for interdisciplinary care. However, gaps in continuity of care remain. Patients often stay in hospital long after their acute-care requirements have been met, increasing the number of beds being used for alternative levels of care (ALC) as opposed to direct patient care needs. These delays are often caused by slow processes, complex or inadequate communication and lack of timely information.⁴²

Home care can help manage ALC issues by providing a setting that can act as a link between hospital and community care. However, we must redefine the way in which home care is conceptualized and move away from the antiquated model of considering the hospital and home as separate and unrelated entities. Service paths must be established through integrated health service networks, whereas the concept of service plan coordination must be recognized and an agreement on treatment protocols must be reached by the interdisciplinary team.

Providing home care to complex chronic disease patients through interdisciplinary teams is in fact consistent with present system priorities in Canada. The Ministry of Health and Long-Term Care has identified chronic disease management and prevention as a priority, and has developed a common policy framework to guide efforts for a systematic approach to addressing chronic disease in the province of Ontario. The 2003 and 2004 Health Accords, endorsed by federal, provincial and territorial governments, identified interdisciplinary care as a priority for health-care system renewal, and in many jurisdictions steps are already being taken to incorporate interdisciplinary care into human resources planning in health care.³⁵ Furthermore, Ontario's government initiative entitled Ageing at Home Strategy is providing increased funding to assist those who wish to remain at home.

For complex chronic disease patients who are the most frequent users of health-care services, whose service provisions cost the most and who require specialized care, including prevention and management, home care is a viable and necessary alternative. Although health-care leaders and policy-makers in the province of Ontario acknowledge the benefits of home care, particularly for chronic disease patients and the benefits of interdisciplinary teams, the potential benefits of uniting both approaches has yet to be addressed. In the end, perhaps the challenge is to move beyond the understanding of delivering care in the home to the understanding of complex health problems that chronic disease patients have and the approach to delivering care to these patients in their homes.

	Footnotes

 
Peter Tsasis PhD FACHE, Assistant Professor, School of Health Policy and Management, School of Administrative Studies, York University, 4700 Keele Street, Toronto, Ontario, Canada M3J 1P3; Jatinder Bains MSc BSc PT CHE, Director, Business & Performance Management, Bridgepoint Health/Bridgepoint Community Rehab, Toronto, Ontario, Canada

	References

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