Family response to critical illness

Family response to critical illness: Postintensive care syndrome–family Judy E. Davidson, DNP, RN, FCCM; Christina Jones, RN, PhD, MBACP, MBPsS, CSci, DipH; O. Joseph Bienvenu, MD, PhD Background: The family response to critical illness includes development of adverse psychological outcomes such as anxiety, acute stress disorder, posttraumatic stress, depression, and complicated grief. This cluster of complications from exposure to critical care is now entitled postintensive care syndrome–family. Adverse psychological outcomes occur in parents of neonatal and pediatric patients and in family members of adult patients, and may be present for >4 yrs after intensive care unit discharge. Psychological repercussions of critical illness affect the family member’s ability to fully engage in necessary care-giving functions after hospitalization. Prevention: It has been suggested that the manner in which healthcare workers communicate with family members and the

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amily members of critically ill patients are at high risk for anxiety and depressive conditions, including acute stress disorder, posttraumatic stress disorder (PTSD), depression, and complicated grief. A task force of the Society of Critical Care Medicine (Chicago, 2010) exploring patient and family responses to critical illness has proposed a new term for this cluster of complications, postintensive care syndrome–family (PICS-F). In this article, we review what is currently known about the epidemiology, assessment, prevention, and treatment of PICS-F conditions.

EPIDEMIOLOGY Prevalence Studies estimating the burden of PICS-F in the first several months after From Research Integration and Management (JED), Scripps Clinical Research Center, Scripps Health, La Jolla, CA; Nurse Consultant Critical Care Rehabilitation (CJ), Whiston Hospital, Prescot, UK; Department of Psychiatry and Behavioral Sciences (OJB), Johns Hopkins University, Baltimore, MD. Search Strategies: Cinahl, Medline, Psychinfo, Science Citation Index: Forward from Jones 2003, Davidson 2007. Dr. Bienvenu receives funding from the National Institutes of Health. The remaining author has not disclosed any potential conflicts of interest. For information regarding this article, E-mail: [email protected] Copyright © 2011 by the Society of Critical Care Medicine and Lippincott Williams & Wilkins DOI: 10.1097/CCM.0b013e318236ebf9

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way in which families are included in care and decision-making, may affect long-term outcomes. Preventive strategies for optimal communication and inclusion in care are reviewed. Assessment: Many tools are available to assess the risk for and to diagnose postintensive care syndrome–family conditions during hospitalization and at intervals after discharge. Treatment: Visits after discharge, support groups, and clinics have been proposed for assessing the need for professional referrals as well as for treating family members when psychological illness persists. Studies evaluating these measures are reviewed. (Crit Care Med 2012; 40:000 – 000) KEY WORDS: anxiety; depression; family; intensive care unit; posttraumatic stress disorder

the intensive care unit (ICU) have been reported from around the globe (1–15). We summarize the results of studies providing prevalence estimates in Tables 1, 2, and 3. Several substantive points are worth noting. One-third of parents with children in ICUs have clinically relevant acute stress disorder symptoms (9, 10, 14). Clinically relevant PTSD symptoms are common (median, 21%), but the prevalence varies (range, 13%–56%) within 11 studies (1, 2, 4, 5, 8 –10, 12– 15). The prevalence may be higher in relatives of adult patients (median, 35%) within five studies (1, 2, 4, 5, 8) than in parents of children who have been critically ill (median 18%) within four studies (9, 10, 12–15). Clinically relevant generalized or nonspecific anxiety is common in relatives of patients who have been critically ill (median, 40%; range, 21%– 56%) within four studies (1–3, 8). Anxiety (including nonspecific and acute stress disorder or PTSD symptoms) appears to decrease over time (1, 2, 4, 9, 10, 12, 14, 16, 17). Clinically relevant depressive symptoms are common (median, 23%; range, 8%– 42%) within ten studies (1–5, 7–11) and may also decrease over time (4, 11). Clinically relevant nonspecific emotional distress is also common (12, 15). PICS-F conditions tend to co-occur within persons both cross-sectionally (1, 4, 10) and longitudinally (9, 10, 14). Importantly, PICS-F conditions also tend to co-occur within families (2, 12, 13).

With one exception (7), all of these studies used self-report questionnaires to ascertain psychiatric morbidity and, for some questionnaires, different severity thresholds were chosen across studies. Also, with one exception (8), all of the studies were observational. The most common measure of PTSD symptoms was the Impact of Events Scale (18), and the most common measure of nonspecific anxiety and depression symptoms was the Hospital Anxiety and Depression Scale (19). Although the studies listed in Tables 1 through 3 all followed-up family members for ⬍1 year, there is some evidence that PICS-F can last for years (20).

Risk Factors Demographic risk factors for PICS-F include female gender (10, 12, 13), younger relative (4) and patient (5) age, a lower educational level (6), having a critically ill spouse (7), and being an unmarried parent of a critically ill child (11). Other baseline risk factors include preexisting anxiety or depression or both, as well as family history of anxiety, depression, or severe mental illness (10). Higher stress levels increase risk for PICS-F conditions. For example, family members whose loved ones died or who were believed to be at high risk for death in the ICU (1, 10, 11, 14), who were present at death (6), whose loved ones became ill unexpectedly (14) or 1

Table 1. Prevalence of postintensive care syndrome–family conditions in relatives of critically ill adults Study and Location Azoulay et al (1), France

Jones et al (2), United Kingdom

Follow-Up

Condition: Prevalence

Notes

90 d

PTSD (IES ⬎30): 33% Anxiety (HADa ⱖ10): 49% Depression (HADd ⱖ10): 20%

⬇1 wk

Anxiety (HADa ⱖ11) 61% Depression (HADd ⱖ11): 26% Anxiety (HADa ⱖ11): 30% PTSD (IES ⬎19): 49% Anxiety (HADa ⱖ11): 23%

PTSD was more common in relatives who felt information was incomplete in the ICU (48%), who shared in decision-making (48%), whose relative died in the ICU (50%), whose relative died after end-of-life decisions (60%), and who shared in end-of-life decisions (82%). Severe PTSD was associated with increased prevalence of anxiety and depression and decreased quality of life.

2 mos 6 mos Anderson et al (3, 4), United States

In ICU

Anxiety (HADa ⱖ11) 42% Depression (HADd ⱖ11): 16%

1 mo

Anxiety (HADa ⱖ11) 21% Depression (HADd ⱖ11): 8%

6 mos

Anxiety (HADa ⱖ11) 15% Depression (HADd ⱖ11): 6% PTSD (IES ⬎30): 35% Complicated grief (Inventory of Complicated Grief– Revised ⬎25): 46%

High levels of psychological distress in patients were correlated with PTSD symptoms in relatives. In the groups who preferred an active role, shared role, and passive role, respectively, 42%, 25%, and 88% had anxiety, and 8%, 11%, and 50% had depression. Anxiety and depression were associated with younger age at 1-mo but not 6-mo follow-up. At these follow-ups, neither condition was associated with other demographic variables, relationship to the patient, decision-making role preference, or patient status (living or deceased). PTSD was not more common in bereaved than in nonbereaved relatives. Neither PTSD nor complicated grief was associated with decision-making role preference. PTSD was only associated with anxiety at 6 mos, whereas complicated grief was not associated with anxiety or depression at any time point. Neither PTSD nor complicated grief was associated with demographic variables or relationship to the patient.

HADa, Hospital Anxiety and Depression, anxiety subscale (19); HADd, Hospital Anxiety and Depression, depression subscale (19); IES, Impact of Events Scale (18); ICU, intensive care unit; PTSD, posttraumatic stress disorder. Inventory of Complicated Grief–Revised (60) was only administered to bereaved relatives (38%).

who were ill ⬍5 yrs (7), and who experienced additional stressors (7, 10, 11, 14), including additional hospitalizations (11, 14), had higher prevalence of PICS-F conditions. However, mothers of critically ill children who spoke about their feelings during the admission had lower PTSD symptoms at follow-up (15). Also, family members who experienced more social support had lower-state anxiety before their loved ones were transferred from the ICU to a general medical ward (21). ICU staff behavior, including the level of communication, also appeared to affect risk for PICS-F conditions. For example, those who did not feel that they had complete information in the ICU (1) and those who did not find the patient’s physician comforting (7) had higher prevalence, whereas family members who were randomized to have proactive end-of-life conferences and receive brochures on the topic had lower prevalence of PICS-F conditions (8). 2

Relative involvement in decisionmaking also may be relevant to the risk of PICS-F conditions. For example, clinical investigators in France found that being involved in medical decisions, particularly end-of-life decisions, independently predicted later PTSD; the authors noted that family involvement in medical decisions was not the norm in France like it is in North America (1). Clinical investigators in the United States found that relatives who preferred a passive role in decision-making had higher prevalence of clinically significant anxiety and depressive symptoms when the patient was in the ICU (3); notably, decision-making role preference was not associated with later PICS-F conditions (4). Most recently, another group in the United States reported that family members whose actual decision-making role was discordant with their preferred role had higher prevalence of substantial PTSD and depressive symptoms (5).

Significance Maternal stress and anxiety decreases the quality of mother– child interactions and bonding required for normal development (16, 22–24). PICS-F also interferes with adult relatives’ abilities to perform care-giving (15, 17, 25). This is crucial because ICU survivors of all ages require care-giving long after discharge (17, 25).

Assessment Assessing psychological outcomes of family members has not been performed routinely outside of the research setting, and it is not known what impact assessment and referral will have on outcomes. The process of family assessment is also complicated by the fact that while in the hospital, family members are not patients and services to the family are not billable. However, after reviewing the prevalence of health problems in family members of Crit Care Med 2012 Vol. 40, No. 2

Table 2. Prevalence of postintensive care syndrome–family conditions in relatives of critically ill adults who died in the intensive care unit Study and Location

Follow-Up

Gries et al (5) and Kross et al (6), United States

ⱖ6 mos

Siegel et al (7), United States

Lautrette et al (8), France

3–12 mos

90 d

Condition: Prevalence PTSD (PTSD Checklist): 14% Depression (Patient Health Questionnaire-8 ⬎10): 18%

Major depressive disorder (SCID): 27% Generalized anxiety disorder (SCID): 10% Panic disorder (SCID): 10% Complicated grief (Inventory of Complicated Grief–Revised): 5% PTSD (Impact of Events Scale ⬎30): 56% Anxiety (Hospital Anxiety and Depression anxiety subscale ⬎8): 56% Depression (Hospital Anxiety and Depression depression subscale ⬎8): 42%

Notes Females, those who knew the patient for a shorter time, and those whose preference for decision making was discordant with their actual decision-making role had higher prevalence of each condition. Those with a lower educational level had a higher prevalence of depression, while those whose family members had ventilation withdrawn had lower depression scores. Family members of older patients had lower PTSD scores, while those who had early family conferences or were present at the time of death had higher PTSD scores. Those with substantial PTSD or depressive symptoms felt that access to a counselor and information about spiritual services would have been helpful in the intensive care unit. Disorders were more common in spouses than other relations (63% vs. 16%), those experiencing additional stressors (53% vs. 21%), those who said the patient was ill ⬍5 yrs (45% vs. 8%), and those who said the patient’s physician was not comforting (71% vs. 23%). The relatives in the intervention group (proactive endof-life conference and brochure) had lower prevalence of PTSD (45% vs. 69%), anxiety (45% vs. 67%), and depression (29% vs. 56%) than those in the control group.

PTSD, posttraumatic stress disorder; SCID, Structured Clinical Interview for DSM-IV (63). Hospital Anxiety and Depression anxiety subscale (19); Hospital Anxiety and Depression depression subscale (19); Inventory of Complicated GriefRevised (60); Impact of Events Scale (18); Patient Health Questionnaire-8 (62); PTSD Checklist (61).

the critically ill, these authors posit that the profession has a moral obligation to begin to bring assessment past the current standard of only assessing satisfaction with care. Although further work needs to be performed to validate the use of these tools for this purpose, tools are available to assess satisfaction, anxiety, posttraumatic stress, depression, quality of death and dying, and complicated grief (26). Family preferences for inclusion and styles of decision-making should also be assessed (1, 3, 5, 27). Timing is important when assessing risk factors for or presence of disorders. Risk factors such as distance from the hospital, existing support systems, preexisting mental health issues, and preferred involvement in and style of decision-making should be assessed during the ICU admission. Comprehension of and satisfaction with communication and care can be assessed throughout the ICU stay. Anxiety and depression can be measured at any time during or after the hospitalization. Acute stress disorder is diagnosed within 1 month of the critical illness and PTSD is diagnosed after 1 month. Complicated grief is typically diagnosed if subCrit Care Med 2012 Vol. 40, No. 2

stantial depressive symptoms persist ⬎2 months after the death of the loved one or if there is marked functional impairment, morbid preoccupation with worthlessness, suicidal ideation, psychotic symptoms, or psychomotor retardation (28). In the special case of infants, maternal– child bonding and interaction are measured using validated tools or direct observation (22– 24, 29, 30) during and after the ICU stay. Figure 1 displays the recommended chronology of assessment and diagnosis.

Prevention When preparing the Society of Critical Care Medicine/American College of Critical Care Medicine guideline on family support, a subset of studies emerged describing long-term psychological outcomes in family members of critically ill patients (31). From 66 references of low level of evidence in a section entitled Family Coping, the following recommendations were made. The ICU staff should receive education related to assessing and meeting family needs to reduce family stress. The family should receive updates

frequently in a language they understand and from consistent members of the team. The family should be provided information in a variety of formats (e.g., verbal, written, and video). Families are encouraged to participate in care as appropriate when they are comfortable doing so (31). The guideline (31) was reviewed by the Royal College of Nursing in Australia and further adopted for practice there (32). The authors commented that one weakness of the guideline was that it was not validated by families. Since publication of the guideline, additional family-informed research has supported the recommended preventive strategies and informed new approaches to assist in the family’s response to critical illness (3–5, 7, 8, 13, 16, 30, 33–38).

Communication The literature regarding family involvement in medical decision-making is growing, and extant data suggest that the methods of communication and inclusion in decision-making may play a vital role in outcomes (1, 5, 7, 39 – 41). Tilden 3

Table 3. Prevalence of postintensive care syndrome–family conditions in parents of critically ill neonates and children Study and Location Parents of neonates Shaw et al (9), United States

Follow-Up

Condition: Prevalence

Notes

In ICU

ASD (Stanford Acute Stress Reaction Questionnaire): 33% PTSD (Davidson Trauma Scale): 18% Depression (Beck Depression Inventory II): 12% ASD (ASDS): 32% PTSD (PCL): 13% Mothers–postpartum depression (Postpartum Depression Screening Scale): 39%

Parents of children treated in a neonatal ICU. ASD symptoms were correlated with later PTSD and depression symptoms. Fathers appeared to have a later onset of PTSD.

4 mos

Lefkowitz et al (10), United States

Miles et al (11), United States

In ICU 30 d

In ICU 2 mos 6 mos

Parents of children Shears et al (12), United Kingdom

Depression (CESD ⱖ16): 63% Depression (CESD ⱖ16): 30% Depression (Center for Epidemiologic Studies Depression scale ESD ⱖ16): 16%

In ICU

Distress (GHQ ⱖ5): 51%

3 mos

PTSD (Impact of Events Scale ⬎35): 35% Distress (GHQ ⱖ5): 28%

Bronner et al (13), the Netherlands

3 mos

PTSD (Self-Rating Scale for PTSD): 13%

Baluffi et al (14), United States

In ICU 2 mos

ASD (ASDS): 32% PTSD (PCL): 21%

Colville and Gracey (15), United Kingdom

8 mos

PTSD (Impact of Events Scale ⬎35): 18% Distress (GHQ ⱖ5): 53%

Parents of children treated in a neonatal ICU. ASD: mothers, 35%; fathers, 24%. PTSD: mothers, 15%; fathers, 8%. ASDS scores were associated with prepartum depression (mother), family history of depression, and worry that the child might die. PCL scores were associated with ASDS scores; family history of anxiety, depression, or severe mental illness; and concurrent stressors. Postpartum depression scores were associated with ASDS and PCL scores, prepartum anxiety and depression (mother), concurrent stressors, and family history of anxiety or depression. Mothers of prematurely born infants treated in a neonatal ICU. Unmarried mothers, mothers of infants who were rehospitalized, and mothers who reported more maternal role alteration stress during hospitalization and worry about the child’s health had more depressive symptoms.

Parents of children who were treated for meningococcal disease (many in a pediatric ICU). PTSD and general mental distress were more common in mothers than in fathers. Child psychiatric symptoms and length of admission were associated with parent psychiatric symptoms. Parents of children treated in a pediatric ICU. Substantial PTSD symptoms were more common in mothers (15%) than in fathers (9%). Symptoms of PTSD were correlated across parents. Parents of children treated in a pediatric ICU. PTSD symptoms at follow-up were associated with unexpected admission, parents’ degree of worry that the child might die in ICU, ASD symptoms, and the occurrence of a subsequent hospital admission or traumatic event. Mothers of children treated in a pediatric ICU. Distress was associated with retrospective accounts of stress during the admission. Mothers who talked about their feelings during the admission had lower PTSD symptoms at 8 mos; 74% would have appreciated the offer of a follow-up appointment.

ASD, acute stress disorder; ASDS, acute stress disorder scale (64); ICU, intensive care unit; GHQ, General Health Questionnaire; PCL, PTSD Checklist (61); PTSD, posttraumatic stress disorder. Beck Depression Inventory-II (65); Center for Epidemiologic Studies Depression scale (66); Davidson Trauma Scale (67); Impact of Events Scale (18); Self-Rating Scale for PTSD (68).

et al (42) found that family members of critically ill patients in Oregon were more stressed when there was no written evidence of patient wishes, the patient was nonwhite, and the family had a longer commute to the hospital. Notably, some families prefer to be included more than others. When the preferred level of in4

volvement is not assessed and honored, the psychological distress and dissatisfaction appear more severe (5, 27). As noted, Siegel et al (7) found that relatives’ longterm emotional outcomes were worse when the physician was not perceived by the family as comforting. Similarly, Jones and Griffiths (43) found that relatives

who found nurses supportive were less anxious. Curtis et al (39, 40) have proposed that the structure of communication in endof-life conferences affects outcomes. One study coupled the VALUE method of care conferencing with a written brochure and decreased anxiety, depression, and postCrit Care Med 2012 Vol. 40, No. 2

One might consider involving psychiatric consultants when families show evidence of PICS-F conditions during the hospitalization; however, because relatives are not officially patients, this is often not feasible. Nevertheless, consultants can be helpful in helping family members understand the psychiatric state of critically ill patients, and they can provide informal advice regarding avenues for treatment of family members.

Remedial Measures

Figure 1. Timing of assessment. Adapted with permission from Kentish-Barnes et al (26). ASD, acute stress disorder; PTSD, posttraumatic stress disorder.

traumatic stress disorder symptoms at 90 days (Lautrette et al study in Table 2) (8). The mnemonic VALUE stands for: value family contributions to discussion; acknowledge family emotions; listen; understand the patient as a human; and elicit questions from the family.

Promoting Adaptive Coping As noted, maternal stress/anxiety decreases the quality of mother– child interactions and bonding required for normal development (16, 22–24). To decrease maternal anxiety and improve outcomes of premature infants, Melnyk et al (29) developed the Creating Opportunities for Parental Empowerment program, which shares important information with mothers, including an audiotape, a written activity book, and personalized instruction. The authors demonstrated that the program substantially reduced anxiety in mothers (effect size 0.4 by 12-month follow-up) (29) and improved their premature low-birth-weight children’s cognitive development (44). The later fullscale, randomized, controlled trial (36, 45) demonstrated reduced maternal distress at 2 months (the program accounted for approximately 20% of the variance in this outcome), as well as improved mother–infant interactions and infant health (45). The cost per infant for the intervention was $136. With the intervention, the average length of stay in the neonatal ICU was 4 days fewer; specifically, the mean (SD) length of stay was 32 days (22) for children in the intervention group vs. 36 days (27) for children in the comparison group (p ⫽ .05) (46). Melnyk et al (36) extrapolated that if evCrit Care Med 2012 Vol. 40, No. 2

ery low-birth-weight infant born in the United States had this intervention, the country would save $2 billion yearly. Feeley et al (30) conducted a feasibility program of an enhancement to Creating Opportunities for Parental Empowerment called Promoting Mother’s Ability to Communicate, which involves videotaping mothers and using the videotapes as an instructional tool. The feasibility study for this program was promising, and mothers reported satisfaction with the content (30). Davidson has proposed an intervention that increases family involvement in the ICU care of adult relatives that accords with the nursing theory “facilitated sense-making” (33, 47, 48). In this intervention, families perform familiar activities like filing nails, applying lip balm, or applying lotion, or family members are taught simple activities such as passive range of motion exercises. These calming activities provide increased exposure to the critically ill patient, a feeling of usefulness in what is often a frightening and bewildering environment (perhaps particularly so when loved ones are delirious), and increased interactions with the professional healthcare team (49). Without such an intervention, if family members are overwhelmed and avoid being in or thinking about the situation, greater distress and PTSD symptoms would be expected in the future (50). An additional potential benefit is that the intervention allows family members to adjust to their roles as caregivers. Davidson et al (33) conducted a feasibility study of this intervention that demonstrated its feasibility and attractiveness to family members.

Few studies have examined what healthcare providers should do after discharge to protect family health. Preliminary studies suggest that care-giving is associated with decreased physical and emotional health (17), and quality of life for the care giver is worse when the patient does not recover fully (20). Also, infant health and development is affected by parental stress (30).

Visit After Discharge Some have proposed a family debriefing visit after discharge; such visits are well-accepted by family members (15, 34, 35, 38), although psychological outcomes from these programs have not been evaluated. Home health assistance is advocated for the transition to help family members prepare for the care-giving role (17).

Clinics After ICU and Follow-Up Some have suggested that family clinics that begin with ICU discharge may improve family health and adaptation to the care-giving role (2, 34, 51–54). The 2009 U.K. National Institute for Health and Clinical Excellence guideline (55) was developed using low-level evidence, indirect evidence, and consensus; this guideline advocates the use of follow-up after ICU for patients and their families. The National Institute for Health and Clinical Excellence guideline recommends that follow-up visits include the structured dissemination of information, as well as physical and psychological assessments (55). Approximately 30% of ICUs in the United Kingdom operate a follow-up clinic (56). The likely benefits of such clinics seem self-evident, i.e., knowing the problems families face, it stands to reason that they would need support after discharge. Family members report that support groups and clinics are 5

helpful (53, 57, 58), and mothers of pediatric ICU patients approved of the concept of a follow-up visit (15). However, to our knowledge, salutary effects for family members of follow-up visits after the ICU have not been measured, and benefits for survivors of critical illness have not been demonstrated (59). The exact nature of clinics after discharge is not standardized (56, 59, 60), and it is currently unknown what type of intervention would produce the best results for family members.

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ICU Rehabilitation Programs To our knowledge, the only published randomized controlled trial of an ICU rehabilitation program that measured family outcomes is that of Jones et al (2, 54). In that study, no difference was evident in anxiety, PTSD, or depression symptoms between families of patients in the study group (who received a 6-wk self-help manual) and families of patients in the control group.

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CONCLUSION We have presented options for prevention that center around communication strategies and methods for family inclusion in care. The literature is beginning to show that how we communicate, how we help families make sense of what has happened, and how we help them make sense of their new roles as care givers can be important preventive strategies during hospitalization. Clinics after discharge or support groups may be helpful. It is clear, however, that current healthcare systems are inadequate to prevent PICS-F, the long-term adverse psychological outcomes in family members of ICU patients.

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