Earlier this week, the Russell Sage Foundation published a free e-book, Universal Coverage of Long-Term Care in the United States. What follows is an excerpt from Carol Levine's chapter, which explores the problems family caregivers face as they navigate the modern health care system in America.
The moves to and from these different settings—each with different staff, rules, culture, and expectations of patient and family caregiver—is the new normal in health care. Transitions in care settings can occur within the hospital from ER to ICU to regular floor, from hospital to home or to short-term rehabilitation program in a skilled nursing facility or inpatient rehab hospital, from rehab to home or to a longstay unit in the same or different nursing home, and from the opening to closing a home care case. Often these transitions are abrupt and inadequately planned. As Mor and colleagues point out, “Especially in an elderly population, cycling into and out of hospitals can be emotionally upsetting and can increase the likelihood of medical errors related to care coordination” (Mor et al. 2010: 57). Coleman and colleagues studied the patterns of post-hospital care transitions and found 46 distinct types of care patterns experienced by Medicare patients over a 30-day period (Coleman et al. 2004). Between 13.4 and 25 percent of these transitions were described as “complicated,” i.e., the patient did not go directly home but moved once, twice, or three times between settings (8.1 percent died with the study period). A systematic review of studies of the determinants of preventable hospital readmissions found significant variation in index conditions, readmitting conditions, timeframe, and terminology (Vest et al. 2010).
Given this complexity, there is no typical pattern of transitions. But the following hypothetical example, based on Coleman’s work and the Institute for Healthcare Improvement’s list of typical failures in transitions (Institute for Healthcare Improvement 2009) brings this profusion of factors to a concrete level. This is neither a worst-case nor a best-case scenario; it is simply a common-enough scenario (for a geriatrician’s view of a multiple-transition case, see Gillick 2010).
Mrs. Jones, an 81-year-old widow who lives alone and manages fairly independently, although recently she has begun to have memory lapses. Her daughter, Louise, lives nearby and helps her mother manage her medications for her heart condition and hypertension and pays her bills. One day on her way to the store Mrs. Jones falls and breaks her hip. She also hits her head on the sidewalk and is confused and disoriented. A passerby calls 911, and an ambulance takes her to the nearest Emergency Department (not the hospital where her doctor has admitting privileges). She is admitted to the hospital and has surgery to repair her hip. She spends several days in the ICU where she develops delirium and is given a psychotropic drug before being moved to the regular floor. All this time Louise has been standing by, getting bits of information from different doctors but without a clear understanding of her mother's condition or what is going to happen next. Mrs. Jones is recovering reasonably well from surgery but her confusion and disorientation persist.
After only a day on the hospital floor, Louise is told on Friday morning that her mother is being transferred that afternoon to a nursing home for rehab. Louise protests that she wasn’t consulted on this move and does not want her mother to go to a nursing home. She is told (incorrectly) that if she does not accept this transfer, she will have to pay for the additional hospital care. No one explains her right to appeal. Mrs. Jones is transported again by ambulance to a nursing home. By then it is late evening and the nursing home is short-staffed and not ready to receive a new patient. No medications have been sent with Mrs. Jones, although she needs regular doses of pain and heart medications. The medication list, when it does arrive, does not contain all the changes made in the hospital.
After a weekend when nothing happens, Mrs. Jones begins therapy on Monday. She complains of dizziness and nausea, which turn out to be related to the psychotropic drug. After a week she develops an infection near the surgical site and is sent back to the ED and then readmitted to the hospital. Louise finds out about the transfer only when she goes to visit her mother at the nursing home. After the infection is treated with IV antibiotics (which might have been done in the nursing home), she is discharged, this time to a different nursing home because there is no bed available at the first one, and Louise declined to pay for a bed hold. After two weeks of therapy, Mrs. Jones has reached a plateau and is not improving. Louise is told, again incorrectly “Medicare won’t pay” (Levine 2010). Her mother is sent home with a referral for home care services, which Medicare will cover in part. Home care services consist of a weekly nurse visit and a physical therapist twice a week. A home health aide comes three days a week for four hours a day. Louise takes time off from her job because her mother cannot be left alone.
In three weeks, the home care services end because Mrs. Jones no longer needs a skilled service. There are two possible future scenarios: Mrs. Jones has recovered well enough to resume her life, more or less as before, with perhaps a little more help from Louise in terms of shopping and transportation. Or, the whole cycle may be repeated, with more falls and hospitalizations, leading to further cognitive and physical decline. After one or more downward cycles, Louise will realize that her mother cannot live independently anymore, nor can she devote her full-time efforts to her care. So Mrs. Jones will enter the long-term care system through admission to a nursing home in worse shape than she was before all the interventions designed to help her. Her private resources soon run out, and she becomes eligible for Medicaid. The first fall was the precipitating event, but the subsequent revolving door was a major factor in her decline.
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