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  Family members of ICU patients often serve as surrogate decision makers and are at high risk to develop long-term psychological problems, such as depression, anxiety, and posttraumatic stress disorder.

  
  
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  Proactive communication has been shown to be an important factor improving satisfaction and lower psychological burden in families of patients dying in the ICU (end-of-life situation).

  
  
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  It can be assumed that around 50% of family members do not understand the diagnosis, prognosis, and treatment of their loved ones. Better information and higher completeness of information have been shown to result in increased family satisfaction.

  
  
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  Relatives’ preference for involvement in the decision-making process varies. Physicians should respect their preference and adapt the family conference accordingly.

  
  
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  Family conferences can be improved if (a) they occur promptly after ICU admission of the patient, (b) information is consistent across treating teams, (c) there is an adequate room for the conference with privacy and good atmosphere, and (d) health care workers ensure that in an end-of-life situation the patient will not suffer and provide explicit support for decisions made by the family.

  
  
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  Empathic statements and more time listening to family members (and less time talking by health care workers) improve families’ experiences in the ICU.

In recent years, the focus of health care workers in the critical care settings has broadened from looking at disease only to patient- and family-centered care. In line with this, the Institute of Medicine defines high-quality care as safe, timely, efficient, effective, equitable, and patient centered,¹ which includes family-centered care. Put another way, patient- and family-centered care is an intrinsic part of the delivery of high-quality health care.

Family-centered care is particularly important in an intensive care setting because patients are frequently unable to participate in their care due to sedation, delirium, and their degree of illness. Thus, family members frequently serve as surrogate decision makers, a role that brings enormous pressure and may result in significant psychological burden and long-term morbidity. Clinical research has demonstrated that proactive communication and high level of care for relatives can lower their psychological burden and prevent posttraumatic stress disorder (PTSD), anxiety, and depression in this population. In this chapter, we will discuss principles of caring for families of ICU patients, an area of evolving importance.

Families of ICU patients are at a surprisingly high risk of developing long-term psychological problems, as well as somatic illnesses, as a direct result of their family members’ ICU stay and illness. It has been demonstrated that up to 80% of families of critical care patients suffer from deleterious effects from their ICU experience.² Family members are at increased risk for anxiety and depression, which may manifest during the initial ICU stay of the patient, but may also persist for a long time or appear only after discharge or death of the patient.^3-5 Up to 70% of family members of ICU patients show symptoms of anxiety. Similarly, symptoms of depression are found in up to 35% of all patients, and in up to 50% in families of patients who do not survive.^4,5

Further, family members are at high risk for PTSD, a particularly disabling form of psychological morbidity. Moreover, this may manifest months after ICU discharge of their loved ones. Symptoms consistent with PTSD can be found in roughly 30% of relatives within 3 months after leaving the ICU or after the death of the patient.⁶ Some experiences bring a higher risk of PTSD: rates of up to 50% are found among relatives who felt that information provided by the clinical staff were incomplete, or when the patient died in the ICU. End-of-life decision making brings a particularly high risk of posttraumatic stress symptoms in family members: up to 60% of relatives of patients dying in the ICU after end-of life decision making may experience these symptoms, especially if they were involved in the shared decision-making process (80%). PTSD in relatives of ICU patients is usually associated with symptoms of anxiety and depression, leading to an important decrease in the quality of life.^3,6

There are different factors associated with the risk of relatives of ICU patients developing psychological problems in the short and long term. These include patient factors such as age of the patient and type of medical condition (eg, end-of-life situations), relatives’ factors (eg, vulnerability and relationship with patients), and health care provider/institutional factors (eg, type of ICU, communication and interaction with health care workers). While patient- and relative-specific factors can typically not be influenced, satisfaction with health care providers and with the overall ICU experience can be improved and may translate into better outcomes of relatives. The following institutional and provider risk factors for family dissatisfaction have been identified, among others: more than two ICU physicians and/or different nurses on two consecutive days caring for the patient.⁷ In addition, dissatisfaction with the following items predicted overall low satisfaction with ICU care: perceived competence of nurses, concern and caring by intensive care unit staff, completeness of information, the decision-making process, frequency of physician communication, and the atmosphere of the intensive care unit and the waiting room.^8,9 There are also family- and patient-related risk factors for family dissatisfaction with ICU care, such as living in the same city as the hospital, disagreement within the family regarding care, having a cardiac comorbidity but being hospitalized in a noncardiac-care intensive care unit, and living in a different household than the patient.⁸ Conversely, proactive communication as well as respect and demonstrated compassion are important factors improving satisfaction in families of patients dying in the ICU. In addition, family satisfaction increases with the duration of life-support withdrawal.¹⁰

Because of this close correlation, many authorities advocate that satisfaction with care must be a central outcome measure in critical care.^11-13 From a systematic viewpoint of improvement, measurement of the ICU experience is a key aspect of quality improvement. In our view, measurement of patient satisfaction alone is likely to be systematically biased and incomplete. First, many patients are unconscious for long periods of their ICU stay, related both to their underlying disease and to therapeutic use of sedative medications. Second, many patients are delirious during their ICU stay. Third (and perhaps most important), a significant fraction of ICU patients die and are therefore unable to respond to patient satisfaction surveys. Similarly, patients who remain delirious, on mechanical ventilation, or neurologically injured after their ICU stay are unlikely to be able to respond to patient satisfaction surveys. Instruments that measure only patient satisfaction would systematically underreport the experience of these patient groups. And yet we care very much about the quality of the ICU experience in all of these circumstances.

It is therefore important to assess and measure relatives’ satisfaction with care in the ICU setting. Because most ICU patients have a family member or surrogate involved in their care during their ICU stay, measurement of these family members’ experience is less subject to the systematic biases described above. Different instruments are suited for this purpose of quantifying satisfaction with care (summarized in Table 17-1). The Critical Care Family Needs Inventory (CCFNI) was one of the first questionnaires used for this purpose.¹⁴ However, it did not include satisfaction with the decision-making process, an item that has been shown to be of utmost importance. Two other instruments include this dimension: the Critical Care Family Satisfaction Survey and the Family Satisfaction in the ICU (FS-ICU) instrument. The FS-ICU is a well-validated instrument designed to measure satisfaction with the critical care experience over different domains.^11,15 Items in the questionnaire were generated from a conceptual framework of patient satisfaction, quality care at the end of life, research on needs of families, dissatisfaction with medical decision making, among others. The Critical Care Family Satisfaction Survey, finally, is a 20-item questionnaire focusing on assurance, information, proximity, support, and comfort.¹⁶

In addition to instruments measuring satisfaction of family members with ICU care, other instruments have been validated to measure the burden of families in domains such as anxiety, depression (HADS), subjective distress (IES, IES_R), and aspects of dying experience (QODD). There are also instruments to measure comprehension of family members in the ICU, which allow health care workers to provide additional information when needed, but they have not been formally validated.¹⁷ Table 17-1 shows advantages and limitations of these instruments adapted from Kentish-Barnes and colleagues.²