Special Feature
Families in the ICU: What Intensivists Should Know
By Richard J. Wall, MD, MPH, Pulmonary Critical Care & Sleep Disorders Medicine, Southlake Clinic, Valley Medical Center, Renton, WA, is Associate Editor for Critical Care Alert.
Dr. Wall reports no financial relationship to this field of study.
Every intensivist recognizes that families play a prominent role in ICU decision making. These roles vary considerably between families (and often drastically between members of the same family). The reasons for this variability include family factors such as relationship to the patient, ethnicity, cultural background, age, education, and level of trust with providers. Patient factors also impact family decision making such as severity of illness, patient preferences, and the level of prognostic certainty. To complicate matters, many patient factors are not static. Moreover, clinicians bring their own personal biases and variable levels of training with handling families into these interactions. Not surprisingly, ICU clinicians describe this as one of the most challenging aspects of their job.
In the current essay, I will discuss key areas of research on families in the ICU. I will briefly present a rationale for why you should even care about this topic. The remainder of the essay will be devoted to examining what is known about ICU family satisfaction, the concept of shared decision making, and ways to improve physician-family communication.
Why Focus on Families in the ICU?
Focusing on ICU families is important from a quality standpoint. A key component of quality care is patient-centeredness. Because families play a key role in ICU decision making, delivering patient-centered care requires delivery of family-centered care. Indeed, most critically ill patients prefer that their families be relied upon for decision making, even if the family's wishes and the patient's advance directives disagree.1
Focusing on ICU families improves patient care. Family-focused interventions can resolve decisional conflicts, increase the likelihood that families come to a definitive treatment decision, reduce ICU length of stay, and decrease the use of non-beneficial treatments.2-4
Focusing on ICU families is important because these individuals have unique needs. These needs can be classified into five domains: support, comfort, proximity, information, and assurance.5 A variety of studies have demonstrated that nearly all of these needs are actionable and under the direct control of ICU clinicians. Studies also suggest that ICU families need our help because they are at risk. Many family members experience post-traumatic stress or depressive symptoms when their loved one is in the ICU,6 and this may impact their decision-making ability. In addition, ICU families are at risk for conflict between themselves and with providers. From a practical standpoint, delivering family-centered care is a smart business strategy because lawsuits are less likely when families experience open, honest communication.7
Family Satisfaction
Recent studies have focused on measuring and understanding family satisfaction. In a multicenter Canadian study, provider-family communication had more influence on overall family satisfaction scores than patient-related aspects of care.8 Similarly, another multicenter French study found that the key predictors of family satisfaction were information exchange and communication with providers.9 This desire for information exchange is a recurring theme among ICU families regardless of whether the patient lives or dies.10
Several tools are available for measuring family satisfaction in the ICU. The best known and original tool is the Critical Care Family Needs Inventory (CCFNI).5 This 45-item instrument has been rigorously validated for more than 20 years and translated into numerous languages. A shorter 14-item version was released in 1998.11 The CCFNI is easy to administer and score. Each item is rated from 1 to 4. However, the CCFNI lacks many items on decision making, a shortcoming that prompted development of newer tools.
The Family Satisfaction in the ICU survey (FS-ICU) is a 24-item questionnaire designed to measure family satisfaction with ICU care.12 The first 14 items measure satisfaction with overall care, whereas the last 10 items measure satisfaction with decision making. Researchers have used the FS-ICU in several studies. Recently, the FS-ICU was used by the American College of Chest Physicians in a multicenter intervention study.13 The instrument has been translated into several languages and is available on-line.12
A final tool is the 20-item Critical Care Family Satisfaction Survey.14 The various items are rated on a 5-point Likert scale, and distributed among 5 subscales. The instrument has been translated into a few languages, but research experience is still limited.
Family Decision Making in the ICU
Acknowledging that ICU clinician-family communication is often inadequate, Curtis and White recently published a guideline for conducting evidence-based family conferences.15 A portion of this excellent paper is dedicated to the concepts of decision making in the ICU.
Intensivists often view their role in ICU decision making in one of three ways: 1) parentalism (doctor makes treatment decisions with little input from family); 2) informed choice (doctor provides information but withholds opinions and allows family to bear the burden of decision making); or 3) shared decision making (both physician and family express their opinions and jointly reach a decision).
Curtis and White propose a stepwise approach for improving family decision making in the ICU. Shared decision making is the default starting point. First, the physician should determine the patient's prognosis, and if possible, the certainty of that prognosis. Second, the physician should inquire as to the family's desired decision-making role, given the prognostic information. Third, the physician should adapt his/her communication approach to the family's desired role. Finally, this cycle should be repeated as new clinical information becomes available and prognosis changes.
In the beginning of an ICU stay, a shared decision-making model may be most appropriate. However, as the prognosis becomes poorer and the certainty about this prognosis becomes higher, physicians might want to shoulder more of the decision-making burden, thereby allowing the family to cede responsibility for these uncomfortable decisions. This is sometimes referred to as "informed assent." Of course, this will largely depend on the family's desired role, hence step 2 above.
When meeting with family members, use the principle of "substituted judgment," i.e., what would the patient say if he/she were present. In general, families are often unable to state their role preference unless they first understand the prognostic certainty. Realize that family members may shift their preferences, at which point the physician must reevaluate and shift his/her own role.
In my opinion, what makes this paradigm helpful is that it explicitly reminds us that the purpose of a family conference is not to coerce the family into agreeing with what the medical team thinks is best. Rather, the purpose of a conference is to share clinical information and elicit the family's preferred role for decision making. Physicians must view themselves as a dynamic variable, constantly reassessing the situation and adapting their communication style to fit the family's desired decision-making role.
Improving Family Conferences
Observational studies have uncovered useful strategies for improving the quality of ICU family conferences (see Table, below). Several of these strategies have been combined into a 5-letter mnemonic (VALUE) for improving clinician-family communication: value, acknowledge, listen, understand, elicit (see Figure). A few are worth highlighting. McDonagh et al showed that family members were more satisfied with physician communication if the physician talked less (and listened more) during the conference.16 Curiously, the total conference duration did not correlate with family satisfaction. Stapleton et al examined physician statements during family conferences, and found three types of statements were associated with higher family satisfaction: 1) assure that the patient will not be abandoned; 2) assure that the patient will not suffer; and 3) support the family's decisions.17
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The VALUE mnemonic was recently used in a randomized trial aimed at improving clinician-family communication for patients dying in the ICU.18 By simply using the VALUE mnemonic and handing out a bereavement pamphlet during family conferences, physicians were able to dramatically reduce family member psychological stress. At 3 months after ICU stay, the prevalence of anxiety and depression symptoms were dramatically lower in the intervention group (anxiety: 45% vs 67%; P = 0.02; depression: 29% vs 56%; P = 0.003). The intervention group also had less post-traumatic stress symptoms (45% vs 69%; P = 0.01). Although the authors could not determine how much of the effect was due to the pamphlet vs the mnemonic, the results were nonetheless impressive.
Summary
Family members are an integral part of today's ICU, and most want to share in decision making for their loved one. These family members have unique needs and are under incredible psychological stress. The quality of physician-family communication directly impacts family satisfaction with ICU care, and several instruments are now available for easily measuring ICU family satisfaction. A growing body of research has shed light on various ways that physicians can improve ICU family conferences. A recent randomized trial suggests that performing evidenced-based family conferences can improve long-term psychological outcomes in family members who have a loved one in the ICU.
References
- The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients. The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). The SUPPORT Principal Investigators. JAMA 1995;274:1591-1598.
- Campbell ML, Guzman JA. Impact of a proactive approach to improve end-of-life care in a medical ICU. Chest 2003;123:266-271.
- Burns JP, et al. Results of a clinical trial on care improvement for the critically ill. Crit Care Med 2003;31:2107-2117.
- Schneiderman LJ, et al. Impact of ethics consultations in the intensive care setting: A randomized, controlled trial. Crit Care Med 2000;28:3920-3924.
- Molter NC. Needs of relatives of critically ill patients: A descriptive study. Heart Lung 1979;8:332-329.
- Azoulay E, et al; FAMIREA Study Group. Risk of post-traumatic stress symptoms in family members of intensive care unit patients. Am J Respir Crit Care Med 2005;171:987-994.
- Vincent C, et al. Why do people sue doctors? A study of patients and relatives taking legal action. Lancet 1994;343:1609-1613.
- Heyland DK, et al. Family satisfaction with care in the intensive care unit: Results of a multiple center study. Crit Care Med 2002;30:1413-1418.
- Azoulay E, et al; French FAMIREA Group. Meeting the needs of intensive care unit patient families: A multicenter study. Am J Respir Crit Care Med 2001;163:135-139.
- Truog RD, et al. Recommendations for end-of-life care in the intensive care unit: The Ethics Committee of the Society of Critical Care Medicine. Crit Care Med 2001;29:2332-2348.
- Johnson D, et al. Measuring the ability to meet family needs in an intensive care unit. Crit Care Med 1998;26:266-271.
- Family Satisfaction in the Intensive Care Unit (FS-ICU) Survey. Available at: www.criticalcareconnections.com Accessed Nov. 1, 2009.
- Dowling J, et al. A model of family-centered care and satisfaction predictors: The Critical Care Family Assistance Program. Chest 2005;128(3 Suppl):81S-92S.
- Wasser T, Matchett S. Final version of the Critical Care Family Satisfaction Survey questionnaire. Crit Care Med 2001;29:1654-1655.
- Curtis JR, White DB. Practical guidance for evidence-based ICU family conferences. Chest 2008;134:835-843.
- McDonagh JR, et al. Family satisfaction with family conferences about end-of-life care in the intensive care unit: Increased proportion of family speech is associated with increased satisfaction. Crit Care Med 2004;32:1484-1488.
- Stapleton RD, et al. Clinician statements and family satisfaction with family conferences in the intensive care unit. Crit Care Med 2006;34:1679-1685.
- Lautrette A, et al. A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med 2007;356:469-478.
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