Featured Senior Topic of the Week

By Richard C. Birkel, PhD, Executive Director of The Rosalynn Carter Institute for Caregiving

Millions of individuals living with chronic illness, disability or limitations due to aging have their long-term care needs met in the community, often at home. Defining quality in long-term, home and community-based 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. The Institute of Medicine created a framework in "Crossing the Quality Chasm" that identifies six dimensions of quality healthcare in the acute care system. The Rosalynn Carter Institute for Caregiving has adapted this framework and we suggest adding three additional dimensions to create a framework that is useful in thinking about  “quality” in long-term, home and community-based care.

Throughout our discussion we use 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:

1. Safe - avoiding injuries to care-receiver and caregiver from the care that is intended to help them;
2. Effective - providing services based on scientific knowledge to all who could benefit and refraining from providing services to those not likely to benefit.
3. 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.
4. Timely: reducing waits and harmful delays for both those who receive and those who give care
5. Efficient: avoiding waste, including waste of equipment, supplies, ideas and energy.
6. Equitable - providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location, and socioeconomic status.

We think the six dimensions suggested by the IOM report can be usefully applied to long-term and chronic care as well as acute care. Quality long-term care in the community should also be safe, effective, personalized, timely, efficient and equitable.

However, there are other factors that apply in the case of long term community care. We suggest adding three additional dimensions of quality to address these unique considerations.

7. Balanced: providing care that is integrated into the daily life of care-receiver and caregiver, and that facilitates self-determination and a rich quality of life. In the case of long-term, home and community-based care, the care-receiver typically receives care in their primary residence. The care provided should adapt to home and community settings, and help the care-receiver accomplish the normal activities of daily living. Long term provision should not overwhelm the care-receiver’s or the caregiver's need for leisure, recreation, intimacy, connectedness, privacy and self-expression.
8. Shared / Collaborative: integrating the work of family, professional caregivers and the community in a way that maximizes their unique contributions, skills and knowledge. Care in the community should not be entirely shouldered by family and friends in isolation. Instead, quality care in the community should be a collaborative effort between professional and family systems of care, offering adequate respite and assistance to family caregivers, and encouraging participation in effective community programs. The roles of all care providers must be carefully defined and tasks distributed appropriately, utilizing a “team approach.” Professional caregivers should be supportive of family caregivers and the integration of their work should be seamless, consistent, and complementary.
9. Developmental: providing a range of services and supports that are “age-appropriate” and in a manner that facilitates development, learning, and the achievement of personal goals for the care-receiver and members of the long-term care team. Because of the extended time frame over which care is often provided, the care plan should include attention to the long term, developmental needs of the individual receiving care and caregivers. None of the parties should have to put their lives entirely "on hold" because they are receiving or providing long-term care services.

Former First Lady Rosalynn Carter, a caregiving advocate says, “I have had a unique opportunity to address the ‘caregiving crisis.’ With the assistance of many partners, the Rosalynn Carter Institute for Caregiving (RCI) at Georgia Southwestern State University in Americus, Georgia, was created. Our hope is to play a key role in developing better supports for both family and professional caregivers. We know that to confront this crisis, all sectors of society must come together to develop solutions.”

At the RCI, we believe these nine dimensions are a useful starting point for considering how to think about and evaluate “quality” in long-term, home and community-based services. 

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.  For more information please go to www.rosalynncarter.org