After the ICU: Caregiver Well-Being

Greg Martin, MD


December 21, 2016

Caregiver Burden After ICU Discharge

Patients who survive long stays in the intensive care unit (ICU), such as those who receive prolonged mechanical ventilation, will most often require continued assistance from a caregiver more than a year after ICU discharge.[1,2] The effects of this responsibility on the family caregivers are not well known but may include such negative consequences as poor health-related quality of life, emotional distress, a subjective sense of burden, and symptoms of posttraumatic stress disorder.[3]

Cameron and colleagues[4] recently studied 280 caregivers of patients who had received 7 or more days of mechanical ventilation in an ICU to determine which patient and caregiver characteristics were associated with caregiver health outcomes up to a year after patient discharge from an ICU. The caregivers in this cohort were mostly (70%) women, with a mean age of 53 years, and 61% were spouses of the patient. A large proportion of caregivers (67% initially and 43% at 1 year) reported high levels of depressive symptoms, which declined over time in 84% of the caregivers. Variables associated with worse mental health outcomes in caregivers were younger age, greater effect of patient care on other activities, less social support, less sense of control over life, and less personal growth. The researchers concluded that most caregivers of critically ill patients report high levels of depressive symptoms, which commonly persisted up to 1 year after ICU discharge.


Posthospitalization care is most often unpaid, but in the United States, the cost to society can reach $642 billion annually.[5] This study, conducted in Canada, suggests that prolonged ICU care can impose a substantial burden on family caregivers and that caring for patients after ICU discharge puts the caregiver at risk for clinical depression. However, there are caveats to this study: It is a small study, examining only ICU patients who required prolonged mechanical ventilation (>7 days). There was no control group, and the number of caregivers with depressive symptoms at 1 year was small. Together, these factors limit the accuracy of the estimates and the generalizability of the results.

This does not, however, suggest that the effects described in this cohort of caregivers are not real or important. Further studies are needed, particularly of caregivers of patients within different health systems (such as the United States), because support for posthospital care varies by payer and health system. Studies are also needed to explore challenges in addition to and possibly related to depression because previous studies have also examined anxiety, posttraumatic stress disorder, and other complications in caregivers of patients who have been acutely ill in the hospital.[6] In the meantime, both ICU and non-ICU providers need to be more aware of caregiver burdens and the negative physical health, mental health, and social consequences of caring for a patient after hospital discharge and to discuss these issues openly during and after ICU care.


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