Patient- and Family-Centered Care: First Steps on a Long Journey

Sevransky, Jonathan E. MD, FCCM; Nicholl, Bryan; Nicholl, Jo-Beth; Buchman, Timothy G. PhD, MD, MCCM

doi: 10.1097/CCM.0000000000002431
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Department of Medicine, Emory Center for Critical Care, Emory University School of Medicine, Atlanta, GA

Emory University Hospital MICU, Atlanta, GA

Department of Surgery, Emory Center for Critical Care, Emory University School of Medicine, Atlanta, GA

Article Outline

Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning.

–Winston Churchill

ICUs are among the most intimidating locations in the hospital for patients and families. Some machines are connected to the surface. Others invade the substance of the body. Life-sustaining devices and their connections often impair communication and performance of the activities of daily life. Even professionals-turned patients have difficulties communicating effectively when on the other side of the stethoscope (1) in an ICU.

It is into this intimidating environment that we now attempt to deliver more patient-friendly care. The older ways of limiting visitation for family, sedating patients until no longer responsive, and delaying active recovery measures until the patient is long into their stay have been, for the most part, superseded. We now include patients and family in bedside rounds, limit sedation, and mobilize ventilated patients as quickly as possible (2). Patient advocacy groups facilitate public awareness of the illnesses such as sepsis and acute respiratory distress syndrome that are prevalent in the ICU. Contemporary ICU design often includes spaces dedicated to family and friends of the patient in the ICU. Mitigating the visitors’ misery augments effective support of their loved one. In addition, the Society of Critical Care Medicine sponsors initiatives such as THRIVE and the Patient Centered Outcomes Research-Intensive Care Unit Collaborative that are directed at improving communication and decreasing long-term morbidity after critical illness.

In this issue of Critical Care Medicine, Haines et al (3) provide strategy toward leveraging and transforming the advice of families and patients into better delivery of patient care. Their concise review provides guidance about the timing and mechanism of engaging patients and families, offering pointers about how to overcome the challenges of having difficult conversations that ultimately improve care of critically ill patients (3).

According to Haines et al (3), engagement of patients and families is complicated. Some engagement challenges arise from the instability of the patients and their conditions. Others arise from the failure of the clinical team to communicate among themselves and to agree upon a clear message to the family. Clinicians must meet frequently with the patient and their family to review changes in condition, to explore treatment options, and to explain proposed actions.

Compounding these engagement challenges are the changes in clinician work schedules. The complexities of modern ICU assignments (4), including complexities such as multiple providers (including advanced practice providers and physicians), work schedules that deliberately alternate days on with days off, and night shift, interrupt continuity of thought, of care, and of trust.

Even the most basic elements of ICU care delivery can provide anxiety if it is not completely explained to a family member. It can be nerve-racking to see a bedside clinician make multiple changes to infusions without providing information about why these changes are being made. Anxieties are heightened when professionals appear to take their responsibilities casually.

Trust depends on professionalism. Both are compromised when clinicians fail to separate their work from their personal lives in the presence of families. Two authors witnessed a professional setting a haircut appointment while titrating a vasopressor. If the family of a patient does not trust the clinicians, it becomes more difficult for them to take care of their own needs for sleep and respite, which are especially important for longer ICU stays. It is not just clinicians and patients who may become sleep deprived: family members may also suffer from sleep loss and other complications of having a loved one in the ICU (5).

We have made progress engaging patients and their families in the processes of critical care. Yet, progress must not be confused with success—there is much that remains to be done. We must listen to families and we must respond.

Families observe that while 28-day or 90-day mortality rates may be useful clinical endpoints, those rates are not useful functional endpoints for their loved ones who survive. Families (not caregivers) are most affected by quality of life, by diminished functional capacity, and by the accompanying depression. However much we clinicians are excited about new devices and algorithms, we cannot—we must not—lose our focus on the patient and the family. To deliver the “Right Care, Right Now,” we must prioritize “high touch” over “high tech.”

Given the prevalence of long-term disability of both patients and family, the time seems ripe to develop better outcome measures for our clinical trials, measures that reflect quality of life fused with quantity of life (5−7). As technology continues to insinuate itself into the ICU (computer order entry, telemedicine, and use of ultrasound for diagnosis and procedures are three among many contemporary examples), we clinicians need to ensure that the human touch of critical care remains at the center of the patient-clinician relationship.

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1. Hansen-Flaschen J. A PIECE OF MY MIND. What Now? What Next? JAMA 2016; 315:755–756
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