Research shows that many family caregivers receive little guidance from nurses when a patient is discharged from the hospital, even though they're expected to perform tasks that make nursing students tremble. No one has told them how to bathe or dress the patient, dispense medication, change ban-dages, or operate devices. Surveys also show that nurses and family members rarely agree on specific patient needs at hospital admission or discharge.
How can it be that so many family caregivers feel abandoned by nurses? Why do they say we do not teach them, that we do not recognize their own needs, separate from the patient's? Surely, such caregivers have had just one bad experience with a nurse. Surely, the rest of us are blameless.
Unfortunately, the research documents nurses' neglect. In a 2000 survey of family caregivers by Levine and colleagues for the United Hospital Fund, more than half of the respondents said they'd received no training prior to the patient's discharge in basic tasks such as bathing and transferring. Nurses hand out "discharge instructions" on dressing changes, medication regimens, and the proper use of equipment like oxygen tanks and nasal cannulas. Thank goodness for those manufacturers' pamphlets and medication sheets we can give family members. They make things so much easier [horizontal ellipsis] for us. Besides, the visiting nurse will help them sort things out at home, right?
Not necessarily. Not every discharged patient is assigned a visiting nurse who is at the house when patient and family arrive. In this issue of AJN, Carol Levine, director of the Families and Health Care Project at the United Hospital Fund in New York City, describes her own rough transition in becoming a caregiver to her injured husband, "I was left to continue coping on my own with feelings of anxiety, exhaustion, and isolation" (see page 43). The fact is that despite 21st-century technologic advances, families are still patients' primary caregivers, often bearing complicated responsibilities for long periods. They need our help.
But how can busy nurses fulfill responsibilities to both patients and family caregivers?
Let's start with respect. Unless the patient says that staff should not talk to a family member or there is a restraining order, hospital nurses should assess the family's needs before the patient's discharge. Is this woman planning to take her seriously ill husband home and provide care daily and single-handedly? Does this son, who will be driving his father to physical therapy, know how to get him in and out of the car? Is he worried about holding his mother together emotionally?
It doesn't take long to assess caregivers' needs. It's a conversation. Asking how a spouse feels acknowledges her importance and may spur further discussion. Caregivers need practical information-a phone number, for example, to call for expert advice. They need to know how to respond to emergencies. And nurses must understand that the caregiver is assuming a job he never expected to have.
Even if a family member is able to read the pharmacy's printout, he may not understand it. And high-tech medical tasks such as oxygen administration, while routine for nurses, can be intimidating for family members. Even something as basic as the use of a walker requires instruction. Caregivers unfamiliar with transfer procedures can suffer injury, or cause it, setting up a cascade of consequences, including hospitalization or nursing home admission.
Mothers, fathers, daughters, sons, wives, husbands, unmarried partners, and in-laws all have roles in care in the home. Don't be too busy for the families of patients. Attending to their needs can save you time in the long run, as well as reduce their stress.