Involving Families in the Intensive Care Unit: An Underutilized Resource for Creating Better Patient Outcomes

Contributors: Danielle R. Glick, MD, Brian Burk, MBA, Giora Netzer, MD, MSCE, GME ’06, MSCE ‘06 
To learn more about Danielle, Brian, and Giora click here.


gus-moretta-371897-unsplash.pngInvolving families in the care of patients admitted to the ICU can clearly produce better outcomes and lowers costs. The care delivered in the intensive care unit (ICU) is among the most resource-intensive practices in medicine, requiring constant vigilance from nursing and medical providers, coordination of care from numerous ancillary staff, and delivery of high-cost interventions. When family members are engaged as part of this complex practice, they can help speed the recovery of their loved ones by reducing delirium and facilitating recuperation of their physical strength. Furthermore, supporting family members ensures the patients continue to receive excellent care after discharge, when many family members become full- or part-time caregivers. Recognizing the critical nature of patient care in an ICU setting, the appropriate coordinated involvement of families is proven to yield faster recovery and higher end points, while actually lowering the total costs of care. Closer attention to patient perception and family satisfaction offers an avenue for continued improvement for both patient care and resource management.

In 2010 the average cost of an ICU stay was estimated to be $4,300 daily and roughly $108 billion annually in the United States (Halpern). That equated to roughly 0.74% of the U.S. GDP, and 13.2% of all hospital costs. With such staggering sums, it is not surprising that cost reduction, while preserving excellent patient care, is of great interest and import.

We know family involvement is crucial to obtaining the best possible clinical outcomes. Delirium is a common syndrome in the ICU, resulting in worsened neurologic outcomes and longer lengths of stay. A confused, combative patient may be calmed by their loved one, who can reorient him or her. In fact, when families are given more time with their loved ones in the ICU, delirium can be cut in half and the length of stay shortened by a quarter (Rosa). When patients are mobilized in the ICU — like sitting in chairs or walking — they leave the ICU sooner and with better function (Lai). Family members can work with physical therapists and nurses to maximize delivery of therapeutic interventions.

Faced with the life-threatening illness of a loved one, family members face a number of emotional and cognitive challenges. Anxiety and depression are common, especially among spouses (Pochard). Families may grieve their loved ones, before death or even if it does not occur (Glick). These emotions continue after ICU discharge or death, along with post-traumatic stress reactions (Azoulay). Additionally, family members face challenges in their ability to think in the ICU. Long days followed by sleepless nights spent at the bedside or worried at home leave them sleep deprived, with cognitive blunting akin to someone who is legally intoxicated (Verceles). Being overwhelmed by this loss of control can spiral into learned helplessness, in which overwhelmed families detach from decision-making and fall into depression (Sullivan). This highly charged environment poses unique challenges to engaging and communicating with families. However, working with the care team is beneficial for families; for example, parents who partner in the care of their premature infants help their children gain more weight (O’Brien). But the parents themselves also derive benefit, experiencing less stress and anxiety. This effect is also seen in family members helping care for their adult loved ones after cardiac surgery (Skoog et al). 

Efforts towards improving communication may also reduce emotional burden and bolster family member confidence. For example, a specially designated communication facilitator - whose role it is to identify family needs, bridge the gap between families and the healthcare team, and manage conflict as it arises – can help reduce depressive symptoms among family members six months after ICU discharge or death (Curtis). Extra attention to communication through a multidisciplinary approach with pre-specified meeting times can improve family perception and overall satisfaction with communication (White). In both instances, use of a dedicated family “navigator” or “communicator” has been shown to reduce both overall length of stay and cost. And when they feel their voice is being heard, families feel more confident in their abilities to make medical decisions (Majesko). 

As our knowledge and skill in supporting ICU families increase, we must also consider our metrics. While clinical outcomes such as length of stay and cost is one approach to measure the quality of our interventions, a single, accurate and effective approach to measurement remains a challenge. While the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey is widely used after hospital discharge, its use is problematic for the ICU setting. A significant proportion of ICU patients do not survive their hospitalization; another proportion may have new deficits (termed the “Post-Intensive Care Syndrome”) that also preempt survey completion. For surviving patients, the questions may reflect their feelings about their step-down care after ICU discharge. 

Studies at Intermountain Medical Center have found that HCAHPS correlate poorly with the experience of patients and their families in the ICU (Lah). The Intermountain Patient Perception of Quality survey – a 26-item questionnaire which addresses many factors such as caring, privacy, and respect as perceived by the individual - may instead be a better measure (Brown). While validated surveys have been developed for research purposes, e.g. the Family Satisfaction in the Intensive Care Unit instrument, their use as a clinical metric of quality is less clear (Wall). The Society of Critical Care Medicine also has comprehensive guidelines to help steer these interventions, further emphasizing the importance of harnessing the power of family involvement and the need for more robust metrics.

Delivering the best quality ICU care means creating systems that provide the best outcomes and an environment that supports both patients and their families. By engaging families, patients do better — and so do their loved ones. An anxious mother asks what she can do to help in the care of her critically ill son. By allowing her to participate by doing simple tasks like mouth care, physical therapy, and reading to him, she is empowered to improve a difficult situation. By harnessing her instincts as a mother, not only is she supported mentally and emotionally, but, best of all, she contributes to the shared, ultimate goal of improving her son’s immediate care and longer-term outcome.  By wisely designing the inclusion of the family in the complexity of ICU care setting, we are doing not only what seems “right” but what yields the highest end results for the hospital, the care team, and most importantly the patient.  


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