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118 PART 1: An Overview of the Approach to and Organization of Critical Care

TABLE 17-1 Validated Instruments for Assessing Family Burden in Relatives of ICU Patients
Domains Satisfaction Anxiety/Depression Stress Dying/Death
Selected instruments CCFNI, FS-ICU, CCFSS HADS IES and IES-R QODD
Clinical use Identifying family needs. Family sat- Detects symptoms of anxiety and Assesses subjective distress: Assesses aspects of the dying
isfaction is influenced by patient care, depression, as opposed to syn- intrusion and avoidance of experience that are important to
information, cohesion of the ICU team, dromic anxiety and depression thoughts/ impressions/activities patients and their families
organization of the ICU, and support dur- or people associated with the
ing the decision-making process traumatic event
Strengths CCFNI: well validated with a shorter and Reliable, valid, easy-to-use and Valid, reliable, and responsive; Valid and reliable; good internal
easy-to-use revised version. FS-ICU: well practical; anxiety and depression can be completed easily during a consistency; systemic approach
validated and correlated with family- subscales are independent from telephone interview (relatives, nurse, and physician
QODD each other; validated cutoffs surveyed); specific ICU question-
naire
Caveats CCFNI: no items on satisfaction with deci- Not specific for the ICU Not a diagnostic tool for PTSD;
sions. CCFSS: limited research experience IES-R has not been validated in
ICU patients or relatives
Settings for use Autoquestionnaires; can be sent Autoquestionnaire; can also be Self-assessment questionnaire; Interviewer-administered
by postal mail administered during a face-to- ideally assessed 3-6 months after questionnaire
face or phone interview ICU discharge or death
CCFNI, Critical Care Family Needs Inventory; CCFSS, Critical Care Family Satisfaction Survey; FS-ICU, Family Satisfaction in the Intensive Care Unit Questionnaire; HADS, Hospital Anxiety and Depression Scale; ICU,
intensive care unit; IES, Impact of Event Scale; IES-R, Impact of Event Scale-Revised; PTSD, posttraumatic stress disorder; QODD, Quality of Dying and Death instrument.
Adapted with permission from Kentish-Barnes N, Lemiale V, Chaize M, Pochard F, Azoulay E: Assessing burden in families of critical care patients. Crit Care Med. October 2009;37(suppl 10):S448-S456.

that up to 50% of family members do not understand the diagnosis, of prognosis and treatment strategy. Further, it is important to assure
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prognosis, and treatment of their loved ones. 2,17-19 Poor comprehension relatives that patients in an end-of-life situation will not suffer and to
is often due to insufficient information time provided by clinicians, provide explicit support for decisions made by the family. 28
and high complexity of information. Techniques such as “check-backs” Also, the communication style is very important and is not only
about whether families understand the information provided may associated with quality of care, but also with family satisfaction with
help, but are used infrequently. For example, in one detailed study of communication and the extent of psychological burden. Empathic
family conferences, physicians only rarely assessed whether families statements and more time listening to family members (and less time
understood information relevant to the decision at hand; in fact, this talking by health care workers) improves families’ experiences. 29,30 This
was the least frequently discussed element of shared decision making is particularly important and well studied in end-of-life situations, but
studied. Effective information is therefore important to improve not may also apply to relatives of all ICU patients given that even families
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only the comprehension of relatives but to optimize shared decision of surviving ICU patients are at increased risk to develop psychological
making for relatives, acting as surrogate decision makers. Furthermore, symptoms and morbidities compared to the general population. 6
better information and higher completeness of information has been What is known about interventions to improve psychological out-
shown to result in increased family satisfaction and helps meet their comes for patients and families at high risk of death? First, we know of
expressed needs. 7,8,21,22 a few things that do not work. A seminal study conducted in the early
Communication between families and the treating ICU physicians 1990s (SUPPORT) studied 9,105 seriously ill hospitalized US patients
often takes place in family conferences. These conferences are para- and showed that there were serious problems with physician-patient
mount for discussing diagnosis, prognosis, treatment, and for shared communication in this population, but also showed that an intervention
decision making. This is particularly important in relatives of ICU consisting of a specially trained nurse outside the usual health care team
patients, since these patients often are unconscious and relatives serve had no impact on patient-centered outcomes. More recently, a ran-
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as surrogate decision makers. Therefore, effective communication with domized study using videotaped, simulated family conferences assessed
relatives not only reduces stress on families but also improves medical whether how the physician conveyed prognosis mattered. In this study,
decision making and outcomes for the critically ill patient. Communi- surrogates were randomized to a conference that included either numer-
cation between physicians and families of ICU patients often do not ical estimates of the risk of death (“90% chance of dying”) or qualitative
meet basic standards of informed decision making and health care estimates (“very unlikely to survive”). This had essentially no effect:
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systems often provide inadequate support for family members. Because neither the surrogates’ understanding of the physician’s prognostication
relatives’ preference for involvement in the decision-making process nor their personal estimation of the likelihood of survival varied based
varies, it is important to explore their preferred role in this regard and on how prognosis was conveyed. Finally, a large cluster-randomized
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tailor the communication strategy accordingly. 24,25 This, however, is trial involving 12 hospitals focused on a quality improvement interven-
often missing in real life. 24,25 tion for patients dying in the ICU. This complex intervention included
There are several features and issues during family conferences which clinician education about palliative care and communications, develop-
are important and may influence satisfaction of family members. First, ment of local champions, academic detailing of ICU leaders, feedback
conferences should occur promptly. Conferences held within 72 hours of of performance data to ICU clinicians, and system supports such as
ICU admission result in higher satisfaction with care and lower lengths palliative care order sets. This resulted in no detectable change in family
of ICU stay without changes in mortality. Second, all members of the satisfaction or in the family-rated quality of dying and death. 33
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health care team should provide consistent information. This can be On the other hand, another strategy focused on ICU patients at the
hard to accomplish with a multidisciplinary team with many consul- end of life was conducted in 22 ICUs in France. This approach random-
tants, but remains important nonetheless. There should be an adequate ized families to either usual care or a strategy that included both a proac-
private room for the conference. Preconference “huddles” among tive end-of-life conference and a bereavement brochure. Interviewed 90
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health care workers may help find consensus among the team in terms days later, families in the intervention groups had fewer posttraumatic

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