Handing Off Critically Ill Patients to Family Caregivers: What Are Your Best Practices?

Three aspects of family caregivers are worth noting: a definition of who constitutes a family caregiver, the number of family members who serve in this capacity, and a profile of these care providers.

According to the Family Caregiver Alliance, the term caregiver refers to “anyone who provides assistance to someone else who is, in some degree, incapacitated and needs help.”^4 (p1) A family caregiver may also be referred to as an informal caregiver because the term refers not only to members of the patient’s family, but to anyone with a significant personal relationship to the patient such as friends, partners, or neighbors.⁵ 

Different organizations have attempted at various times to estimate the number of family caregivers in the United States. Data from the late 1980s suggested that there were 29 million family caregivers for ill or disable persons aged 18 years or older.⁶ A decade later, the US Department of Health and Human Services estimated that there were 52 million family caregivers providing care to someone 20 years or older with an illness or disability.⁷ More recently, the National Alliance for Caregiving and American Association of Retired Persons (AARP) reported that 34 million adults, or 16% of the US population, provide care for adults aged 50 years and older.⁸ When comparing these disparate estimates, the AARP admonishes that many of those who provide such care do not identify themselves as family caregivers; as a result, AARP projects that the number of caregivers is likely closer to 65 million, representing nearly one-third of the US population over the age of 18.⁹ 

A 2008 update of that earlier AARP reports an estimated 30 to 38 million individuals age 18 or older who provide caregiving to an adult with a limited activities of daily living (ADL); this figure does not include those caring for children under 18 years with disabilities, caregivers under age 18, grandparents caring for grandchildren, or caregivers assisting adults with chronic health conditions but without ADL limitations.¹⁰ By whichever yardstick is used for measurement, the number of Americans serving as family caregivers is already substantial and anticipated to grow as the population ages.

Most family caregivers are middle-age women who work outside the home while providing more than 12 hours of care each day for an adult who resides with them.¹¹ A more detailed description of attributes of the typical family caregiver is summarized in Table 1.

In its most recent survey of caregiver services, the California Caregiver Resource Center reported¹¹ that the recipients of family caregiving are typically older women who live with family members and whose needs for care assistance have existed for fewer than 2 years. A more specific detailing of care receivers is provided in Table 2.

The circumstances that may lead to someone serving in the role of a family caregiver are many and varied. Although these share in common some relative or absolute loss of one or more functional abilities and/or the need for management of one or more persisting health problems, the onset of these impairments may be slow (eg, Alzheimer’s disease, other dementias, Parkinson’s disease, amyotrophic lateral sclerosis, multiple sclerosis, rheumatoid arthritis)¹¹ or delayed (some brain tumors, sequelae following traumatic brain injury or blast injuries such as improvised explosive device detonation, or toxic complication associated with some chemotherapeutic agents such as 5-fluorouracil,¹² or immediate (eg, stroke, gunshot injury to the head, spinal cord injury).

Even patients who might be expected to recuperate from an initial major diagnosis—for example, those with acute myocardial infarction, acute respiratory failure, or acute renal failure—may later progress to a chronic and debilitating stage of the condition that demands assistance from others for maintaining many aspects of a normal life. For patients such as those with severe head injury or posttraumatic stress disorder, who appear to have maximally recovered from their physical trauma, the balance of their life and that of their family may be marked by the need for ongoing management of enduring behavioral and functional after-effects.

There are 3 broad categories of care that family care-givers provide: ADL, instrumental ADL, and ministrations considered as nursing care. These categories and some of the inclusions within each are summarized in Table 3. It is estimated that more than 40% of caregivers provide various types of nursing care.¹³ Of the family caregivers who work with medical equipment and change dressings, however, 33% report receiving no instruction on how to perform these tasks from health care staff.¹⁶ 

Taken together, the value of these services that family caregivers provide is estimated to be $306 billion per year, or virtually twice the amount spent per year on home care and nursing home care combined ($158 billion).¹⁷ Other organizations estimate the value of those services at figures of $350 billion¹⁰ to $375 billion.⁵ 

The toll of caregiving is often heavy and, at times, protracted. Some of the psychologic, physiologic, and economic effects experienced by family caregivers include emotional impact, depression, declining physical health, higher mortality, reduced work hours and wages, direct out-of-pocket costs, and reduced retirement income.

Regardless of the patient’s medical diagnosis or specific needs for care, 61% of caregivers report high stress levels resulting from their caregiving circumstances.¹¹ 

Although the specifics of individuals’ caregiving situations may differ, the National Family Caregivers Association¹⁸ found that the common bond among caregivers is the emotional impact that caregiving has on their lives. The emotional impact of caregiving encompasses the following:

• Intense sadness

• Frustration owing to altered family dynamics

• Stress from the enormous responsibilities

• Longing for a return to normalcy

• Isolation due to living outside normal life

• Depression over the losses caused by caregiving

• Disappointment over noncaregivers’ lack of understanding

The most detrimental effects of caregiving appear to be waged on the caregiver’s psychological health. Within this area, depression is the most commonly reported problem by 20% to 50% of caregivers, with the highest levels associated with those caring for individuals with dementia.⁴ 

• Family caregivers manifest symptoms of depression at more than twice the rate in the general population.¹⁹ 

• Forty-three percent of family caregivers show clinical manifestations of depression and 61% report feeling depressed.¹¹ 

Twenty-eight percent of caregivers reveal that their own physical health has declined over the past 6 months; 31% report having hypertension; 27% complain of back and neck problems; and 21% have sleep disturbances.¹¹ 

Nearly 90% of caregivers for patients with end-stage heart failure report sleep disturbances.¹⁸ 

Caregivers report having chronic conditions at rates nearly twice (45% vs 24%) that of individuals who are not caregivers.²¹ 

High levels of stress related to caregiving are associated with elevations of cytokine interleukin 6 at levels 4 times that of comparable individuals who are not caregivers.²² 

In addition to elevated blood pressure, insulin levels, and incidence of cardiovascular risk factors, a widely-quoted study from 1999²³ reported that elderly spouses who experienced stress related to care-giving had a 63% higher mortality rate than counterparts at their same age who were not caregivers. Caregiving itself, then, appears to be a potentially lethal risk factor.

Family caregivers who experience extreme levels of stress associated with caregiving may have a lifespan 10 years shorter than adults of comparable ages who are not caregivers.²⁴ A wife’s hospitalization increases her husband’s likelihood of dying within a month by 35%, whereas a husband’s hospitalization raises his wife’s risk of dying by 44%.²⁵ 

Most caregivers need to make adjustments to their work schedule, ranging from arriving to work late (83%), taking a leave of absence (41%), switching from full- to part-time work (37%), giving up work entirely (35%), losing work benefits (15%), and turning down a promotion (14%).⁸ Seven percent of care-givers took a leave of absence, family leave, medical leave, or early retirement in order to provide caregiving.¹¹ 

For middle-aged women, caregiving reduces paid work hours by abut 41%.²⁶ 

Fifteen percent of family caregivers quit their jobs or reduced the number of their work hours because of the need to provide care, thereby also reducing their salary and paid benefits, including retirement and health insurance.¹¹ 

US businesses can incur $34 billion loss per year attributable to workers’ needs to care for loved ones.²⁷ 

About 50% of family caregivers spend an average of $200 per month for groceries, medicine, or other types of cash support. Caregivers who spend the most report spending $324 per month ($3888/year) in financially supporting the care recipient.¹⁰ 

A study funded by the National Institute on Aging¹³ reported that women who are family caregivers are 2.5 times more likely to live in poverty than women who are not caregivers.

Reports as far back as 20 years ago²⁸ estimated that family caregivers lose more than $25000 in Social Security benefits, nearly $70000 in pension benefits, and more than $567000 in wages because of their caregiving contributions.

Reduction in work hours reduces Social Security benefits and job security, limits or eliminates access to employer-sponsored retirement accounts, limits contributions to participatory pension plans, and limits or eliminates saving for emergencies or other retirement needs.²⁶ 

Considering the challenges faced by family caregivers, it is not difficult to anticipate that their most pressing and enduring needs will relate to identifying ways to lighten their considerable burden while affording some modicum of support in their efforts. According to the California Caregiver Resource Center¹¹ and the Family Caregiver Alliance,²⁹ the 3 greatest needs that caregivers report are as follows:

• General information, identified by 65% of caregivers

• Emotional support, identified by 51%

• Respite care, identified by 50%

Other priority needs that caregivers report are summarized in the FigureF1.

A variety of resources are available to assist critical care nurses in supporting family caregivers for the transition and discharge of a critically ill patient to the home setting. Although there is an abundance of online resources directed at caregivers, this section focuses on information and materials developed for health care professionals to assist caregivers in their role.

The Family Caregiver Alliance is in the formative stages of designing what it refers to as “an Innovations Clearinghouse on Family Caregiving,” a repository of cutting edge public policies, procedures, programs, evidence-based practices, as well as educational opportunities and an online national community assembled to advance and advocate for the family caregiver role. Already available at their Web site³¹ are 2 complementary sets of tools and resources, one for caregivers and one for health care professionals. For professionals, one section contains highlights of programs selected for their innovative approaches to program development for caregiver families and a second area contains a plethora of programs and tools selected for their value in augmenting professionals’ knowledge and ability to support family care-givers. A small preview of the contents available in this set of tools and resources can be found in Table 4.

Another compendium of useful tools, tips, guidelines, and informative Web sites is available at the National Family Caregivers Association Web site.³² A summary of these resources is provided in Table 5.

Health care institutions across the United States and around the world discharge patients from critical care units every day, handing off these patients at times to other nurses in less acute care areas and, at other times, directly into the arms of the family members who will care for them at home.