Medical appropriateness of the rehabilitation hospital admission implies a patient will eventually live at home and care for one’s self. The purpose of the rehab program must be to reduce the burden of care for ADL functional tasks and enable patients to live in their community. Critical to success is the transition from hospital to home.
To provide home care to a functionally impaired person hinges on the capacity to do so. A family’s ability to provide care reaches a critical point at which they no longer have the skills necessary to give adequate care, or the burdens of providing it overwhelm them. The greatest of these demands may not be the skill required to complete the tasks but rather the time allotted for their completion. While a patient is hospitalized in a rehabilitation unit, clinicians responsible for accurate assessment of functional impairment comment that “it takes too long” to do the assessment and document the results. The urgency to bypass these tasks may understate their importance related to their time demands when it comes time to discharge ADL responsibilities to a patient’s family. Teaching and preparing care givers to assume these roles are the primary responsibilities of the rehabilitation nurse.
The burdens of caring for recovering family members is well documented. Caregivers consistently report feelings of frustration, anxiety, helplessness, depression and exhaustion. They suffer physical problems, often linked to chronic stress. Financial strains beset them. Many spend a portion of their income or savings on care giving expenses. A substantial number must take unpaid leaves of absence from work, work fewer hours, quit jobs or turn down promotions in order to care for loved ones.
C. Granger has devoted much time and study to the burden of care cost for patients with disabilities. Through his work, we can utilize raw FIM™ score to estimate the amount of time required to assist patients throughout their day. For example, patients scoring 60 for total FIM™ would require approximately four hours of someone’s time daily, every day. This equates to a full time job and must be attended to without time off. Families do not easily comprehend these requirements when it is a loved one for whom they would do anything.
Despite these burdens, the majority of care for the chronically ill and recovering elderly in the United States is provided in an informal family setting. Like any system, the family will simply break down when too much is demanded of it.
Rehabilitation outcomes are dependent upon the patient’s support systems. Failing to adequately assess, document and communicate time burden to prospective care givers limits their understanding and preparedness to assume this role. The rehabilitation program must assure structure and processes are available for clinicians to meet this expectation.