New Validated Instruments - TIME

Patient Focused, Family Centered Care

What is patient-focused, family-centered medical care?

The Toolkit contains two new instruments (see links below) which are patient-focused and family-centered. Patient-focused, family-centered medical care recognizes the important role that family and friends play in caring for persons dying of serious and progressive illnesses. The focus of medical care must be on the dying person; yet, key to the well being of the dying person is the support provided to family and friends prior to and after his/her death.

The four key components of patient-focused, family-centered medical care are as follows:

Provide the desired physical comfort and emotional support,
Promote shared medical decision-making,
Treat each person as an individual by understanding his/her needs and expectations,
Attend to the needs of those that care for and love the dying person.

In addition, two key care processes crosscut medical care that is patient-focused and family-centered. First, patients and families must be informed and educated to the extent they desire. Dying persons and their families need to understand the disease and its future trajectory, their role in living with that disease, and what they can expect from health care providers. Second, coordination and continuity of care across diverse health care settings is key to high quality end-of-life care. In the last month of life, dying people and their families usually receive medical care from a home care agency, an acute care hospital, and a hospice and/or a nursing home. When a patient moves to a different setting, the receiving health care providers must know what to expect, what to monitor, and who the person is—i.e., what are his/her desires, expectations, and values?

The Toolkit’s survey instruments have been developed based both on a review of existing professional guidelines and on input from dying persons and their families regarding what they believe is important for defining high quality medical care. Furthermore, the Toolkit instruments follow the Picker Institute’s technique of "Patient Centered Reports" (PCR). A PCR asks a question about a specific process of care in such a way that patient expectations or social acquiescence does not confound the answers. For example, a PCR asks, "Did the staff explain the medicine that you are taking for pain in a way that you can understand?" A conventional question about satisfaction with pain management would ask respondents to rate their experiences from "poor" to "excellent". In contrast to a ranking such as "very good", a PCR provides health care providers with information to guide quality improvement efforts.

New Validated Instruments