Saturday, July 04, 2009
AGENCY AND COMMUNITY RESOURCES
Defining Quality Care in Long-Term, Home and Community Settings: A Working Paper
Richard C. Birkel, Ph.D.
Rosalynn Carter Institute for Caregiving
How do we measure the quality of care provided to individuals living with chronic illness, disability or limitations due to aging who have their long-term care needs met in the community, often at home? Defining quality in long-term, community care is an essential step toward defining what a system of care should look like. Long-term, community care has some important elements in common with acute care, but it is not the same. We have therefore chosen to begin with the framework proposed by the institute of Medicine "Crossing the Quality Chasm" which consists of six elements of quality healthcare , and add additional elements to better address the unique nature of long-term care in the community. We are indebted to many others working in this field, but would particularly like to cite the work of Ed Wagner and his colleagues at the MacColl Institute for Healthcare Innovation and that of Jim Gardner and colleagues at the Council on Quality and Leadership. Throughout, we have used the term "care-receiver" instead of "patient" to distinguish the individual receiving long-term care services from the individual receiving acute care services We believe that quality long-term care in the community is:
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Safe - avoiding injuries to care-receiver (and caregivers... our additions in parentheses) from the care that is intended to help them;
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Effective - providing services based on scientific knowledge to all who could benefit and refraining from providing services to those not likely to benefit. (We don't know if "overuse" is a serious problem in long-term care although there are clearly questions of effectiveness of many long-term care interventions)
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Personalized - providing care that is respectful of and responsive to individual care-receiver (and caregiver) preferences, needs and values and ensuring that care-receiver (and caregiver) values guide all clinical decisions.
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Timely: reducing waits and harmful delays for both those who receive and those who give care
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Efficient: avoiding waste, including waste of equipment, supplies, ideas and energy.
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Equitable - providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location, and socioeconomic status.
We think these six parameters suggested by the IOM report can be usefully applied to long-term and chronic care in the community as well as acute care in medical settings. Quality long-term care in the community should also be safe, effective, patient-centered, timely, efficient and equitable.
However, there are special considerations for assessing quality in long-term care resulting from a number of factors including the setting of care, who is involved in providing care and their roles and responsibilities, and the length and goals of care. Therefore, we suggest adding two additional dimensions of quality to address these unique considerations.
Specifically, we believe that long-term care in the community should be provided as a "Shared" function of family, professional providers and the community. Care in the community should not be entirely shouldered by family and friends in isolation. Instead, quality care in the community should integrate the efforts of professional and family systems of care, provide adequate respite and assistance to family caregivers, and encourage participation in effective community programs. Quality care in the community involves sharing the actual objective burden of care including the financial and time-related burden between professional caregivers, family caregivers, and community supports including trained volunteers, voluntary health associations and similar groups whenever possible. Effective community programs, supports and services should be integrated into the care plan.
Another aspect of care that often fails to reach quality standards is "coordination" of care. The roles of care-receiver, family caregivers and professional providers must be defined carefully and distributed appropriately; they must act together as a "team". Professional caregivers should be supportive of family caregivers and the integration of their work should be seamless and complementary. They should be partners with the care-receiver and family caregiver and professional and family caregivers should respect the skill, effort, and knowledge of the other. In addition, and perhaps most importantly, coordination requires that the care-receiver play a key role in self management, goal setting, problem solving and evaluation of care as much as possible. Professional caregivers should recognize that their work is supplementary to the fundamental contribution of family and friends and assessment of the needs, knowledge and skills of care-receiver and family caregiver should be an essential step in planning professional services. Family caregivers and care-receivers, in turn, should be assisted in integrating the special skills, knowledge and assistance of professional providers into family routines and a holistic care plan.
Secondly, coordination is required to address the lack of integration and continuity of long-term care services over time and across settings which forces family members to assume a primary care-management role. Services and providers operate within "silos" such as nursing homes, home care, hospital, etc. and there is little coordination and integration across settings. As a result, transitions between settings becomes a crisis point for quality of services; medication errors, for example, tend to be associated with transitions between settings. The critical quality dimension here is "Coordinated"; to assure quality supports for family caregivers, all services provided need to be coordinated. We therefore suggest adding two new dimensions to the IOM's six in order to better capture the requirements for quality long-term care in the community:
7. Shared: providing adequate support, respite and assistance to family caregivers so that the objective burdens of care, including financial and time-related burdens, are shared as much as possible between professional caregivers, family caregivers and others in the community. Integrating the work of family, professional caregivers and the community in a way that maximizes their unique contributions, skills and knowledge.
8. Coordinated: assuring that all providers are in regular communication about the goals of care, respective roles, and requirements of care and that services across settings and over time are carefully integrated and documented.