clinical practice guidelines support family patient-centered icu

7/29/2019 Clinical Practice Guidelines Support Family Patient-centered ICU

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Clinical practice guidelines for support of the family in the

patient-centered intensive care unit: American College of Critical

Care Medicine Task Force 20042005

Judy E. Davidson, RN, FCCM; Karen Powers, MD; Kamyar M. Hedayat, MD; Mark Tieszen, MD, FCCM;Alexander A. Kon, MD, FCCM; Eric Shepard, MD, FCCM; Vicki Spuhler, RN, MS, CCRN;I. David Todres, MD, FCCM; Mitchell Levy, MD, FCCM; Juliana Barr, MD, FCCM; Raj Ghandi, MD, FCCM;Gregory Hirsch, MD; Deborah Armstrong, PharmD, FCCM

In 2001, the Institute of Medicinestrongly recommended that

healthcare delivery systems be-

come patient-centered rather thanclinician- or disease-centered, with treat-

ment recommendations and decisionmaking tailored to patients preferences

and beliefs (1). In the Institute of Medi-

cines patient-centered model, a) patientsand families are kept informed and ac-

tively involved in medical decision-making and self-management; b) patient

care is coordinated and integrated across

groups of healthcare providers; c) health-care delivery systems provide for the

These guidelines were developed by a task forceassembled by the American College of Critical CareMedicine (ACCM) of the Society of Critical Care Med-icine (SCCM) and have been reviewed by the SocietysCouncil. These guidelines reflect the official opinion ofthe SCCM and should not be construed to reflect theviews of the specialty boards or any other professionalmedical organization.

Ms. Davidson was the task force chairperson; Dr.Armstrong was the liaison with the American Collegeof Critical Care Medicine.

The American College of Critical Care Medicine(ACCM), which honors individuals for their achieve-ments and contributions to multiprofessional criticalcare medicine, is the consultative body of the Societyof Critical Care Medicine (SCCM) that possesses rec-ognized expertise in the practice of critical care. TheCollege has developed administrative guidelines andclinical practice parameters for the critical care prac-titioner. New guidelines and practice parameters arecontinually developed, and current ones are system-atically reviewed and revised.

Dr. Levy has received honoraria and research sup-

port from Eli Lilly and Edwards Lifesciences. He also

received research support from Philips Medical Sys-

tems, Chiron, and Biosite. The remaining authors have

not disclosed any potential conflicts of interest.

Copyright 2007 by the Society of Critical Care

Medicine and Lippincott Williams & Wilkins

DOI: 10.1097/01.CCM.0000254067.14607.EB

Objective: To develop clinical practice guidelines for the sup-

port of the patient and family in the adult, pediatric, or neonatal

patient-centered ICU.

Participants:A multidisciplinary task force of experts in crit-

ical care practice was convened from the membership of theAmerican College of Critical Care Medicine (ACCM) and the Soci-

ety of Critical Care Medicine (SCCM) to include representation

from adult, pediatric, and neonatal intensive care units.

Evidence:The task force members reviewed the published liter-

ature. The Cochrane library, Cinahl, and MedLine were queried for

articles published between 1980 and 2003. Studies were scored

according to Cochrane methodology. Where evidence did not exist or

was of a low level, consensus was derived from expert opinion.

Consensus Process: The topic was divided into subheadings:

decision making, family coping, staff stress related to family

interactions, cultural support, spiritual/religious support, family

visitation, family presence on rounds, family presence at resus-

citation, family environment of care, and palliative care. Each

section was led by one task force member. Each section draft wasreviewed by the group and debated until consensus was

achieved. The draft document was reviewed by a committee of the

Board of Regents of the ACCM. After steering committee approval,

the draft was approved by the SCCM Council and was again

subjected to peer review by this journal.

Conclusions: More than 300 related studies were reviewed.

However, the level of evidence in most cases is at Cochrane level

4 or 5, indicating the need for further research. Forty-three

recommendations are presented that include, but are not limited

to, endorsement of a shared decision-making model, early andrepeated care conferencing to reduce family stress and improve

consistency in communication, honoring culturally appropriate

requests for truth-telling and informed refusal, spiritual support,

staff education and debriefing to minimize the impact of family

interactions on staff health, family presence at both rounds and

resuscitation, open flexible visitation, way-finding and family-

friendly signage, and family support before, during, and after a

death. (Crit Care Med 2007; 35:605622)

KEY WORDS: family; family support; family presence; resuscita-

tion; rounds; patient centered care; communication; intensive

care unit; coping; stress; post traumatic stress disorder; palliative

care; cultural; spiritual; religious; decision making; nursing; vis-

iting; family needs; adult; pediatric; neonatal; environment; pro-fessional-family relations; multidisciplinary care teams; termi-

nally ill patients; terminal care; critical care nursing; right to die;

family-centered care; attitude to death; patient care team; be-

reavement; family relations; intensive care nursing; pastoral care;

patient education; holistic care; grief

605Crit Care Med 2007 Vol. 35, No. 2


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physical comfort and emotional supportof patients and family members; d)healthcare providers have a clear under-standing of patients concepts of illnessand their cultural beliefs; and e) health-care providers understand and apply prin-ciples of disease prevention and behav-ioral change appropriate for diversepopulations.

Several studies have demonstrated that

patient-centered care is associated with bet-ter clinical outcomes (25). Nowhere is theneed for patient-centered care greater thanin the intensive care unit (ICU), where pa-tient and family involvement can pro-foundly influence clinical decision makingand patient outcomes. Because critically illpatients are often unable to communicatewith healthcare providers or participate incare decisions, responsibility often falls toothers to function as surrogate decisionmakers. Surrogates may be immediate fam-ily members (as defined by the patient or by

legal precedent) or others named in Dura-ble Power of Attorney for Health Care doc-uments.

Patients and families are expressing adesire for a larger role in healthcare de-cision making and are asking providers todo a better job of responding to patientand family needs (6 8). Despite theseconcerns, families and other surrogatesoften feel uninformed and disenfran-chised from clinical decision making andday-to-day care of loved ones in the ICU(9, 10). For the patient-centered care

model to be realized fully in the ICU, fam-ily members and surrogate decisionmakers must become active partners inmultiprofessional decision making andcare. These individuals often have firsthandinsight into patients preferences and canmake important contributions to care de-cisions, particularly when patients are un-able to advocate for themselves.

To date, there are no published guide-lines defining standards for incorporatingfamilies into decision making and carefor ICU patients. The following guide-

lines, developed in response to the re-quest of the American College of CriticalCare Medicine (ACCM) of the Society ofCritical Care Medicine (SCCM), attemptto define evidence-based best practicesfor support of families in the delivery ofpatient-centered care in the ICU. Theguidelines are organized under the fol-lowing subheadings:

Decision MakingFamily Coping

Staff Stress Related to Family Interac-tionsCultural Support of the FamilySpiritual/Religious SupportFamily VisitationFamily Environment of CareFamily Presence on RoundsFamily Presence at ResuscitationPalliative Care

Methodology

These guidelines were developed fol-lowing an extensive literature review. Thesearch was conducted through the Co-chrane library, Cinahl, and MedLine forarticles published between 1980 and 2003related to the entirety of the topic offamily-centered care. Additional searcheswere conducted using keywords associ-ated with the previously listed subhead-ings. For the topics of family visitation,family environment of care, family pres-

ence on rounds, and family witnessed re-suscitation, the search years were nar-rowed due to a clear shift in focus andphilosophy in the late 1990s. Articlespublished in 2004 and 2005 were addedafter the initial search. The review en-compassed adult, pediatric, and neonatalliterature.

Search results were loaded by sub-heading to a task force e-room of theSociety of Critical Care Medicine. Au-thors were assigned a subheading andinstructed to retain for further analysis

any articles containing metrics (includ-ing survey research) or notable publica-tions of consensus.

Cochrane methodology was used toevaluate each articles level of evidenceand to grade the recommendations (Table1). Most of the research reviewed wasCochrane level 4 or 5 (case series, expertopinion, or survey research). Each sec-tion of the guidelines concludes with rec-ommendations. Unless otherwise noted,recommendations apply equally to care inadult, pediatric, and neonatal environ-

ments.For the section on palliative care, thetask force reviewed the Clinical PracticeGuidelines for Quality Care, released in2004 by the National Consensus Projectfor Quality Palliative Care (11). Althoughthe National Consensus Project guide-lines pertain to both patient and familycare, they are also applicable to familysupport. The SCCM endorses the recom-mendations of the National ConsensusProject in their entirety.

For the purposes of this document,the definition of family published by theNational Consensus Project for QualityPalliative Care is adopted: Family is de-fined by the patient or in the case ofminors or those without decision makingcapacity by their surrogates. In this con-text the family may be related or unre-lated to the patient. They are individualswho provide support and with whom the

patient has a significant relationship(11).

Decision Making

In the past, two primary models ofmedical decision making have existed:the patient autonomy model and the pa-ternalistic model (12, 13). In the first,responsibility for medical decisions restswith the patient or an appropriate surro-gate. In the second, physicians have au-thority for medical decision making.

During times of crisis, the autonomymodel may place an undue burden onfamilies and can be viewed as a form ofabandonment (14). In the interests of pa-tient autonomy, physicians may ask fam-ily members, who are in a heightenedemotional state, to understand complexmedical conditions, accept prognosticuncertainty, weigh various complextreatment options, and then take sole re-sponsibility for end-of-life decision mak-ing and withdrawal of life support, oftenwith limited information and copingtools.

The literature indicates that patientsand their surrogates need more decision-making help from the ICU team than thepatient autonomy model allows (15). Anew model, known as shared decisionmaking, has been introduced over thepast several years (16, 17). In shared de-cision making, a genuine partnership isformed among the ICU team, patients,and their loved ones. Through this part-nership, patients preferences can beidentified, the anxiety of families can belessened, and physicians can have appro-

priate input into decisions. A recent mul-tiple-society-sponsored internationalconsensus conference on end-of-life careconcluded that shared decision makingshould be viewed as the primary modelfor making medical decisions in the ICU(18).

Recent data suggest that families inboth North America and Europe favor theshared decision-making model (1823).Cultural attitudes of the patient and fam-ily need to be addressed and respected

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when using the model (see Cultural Sup-port of the Family).

Shared decision making requires reg-ular meetings between ICU team mem-bers as well as meetings between the ICU

team and family (19). The authors of thisdocument concur that good communica-tion skills, conflict management skills,and meeting facilitation skills are neededfor the shared decision-making model to

be effective; training in these skillsshould become a standard component ofmedical education and should be widelyavailable for all ICU caregivers. One in-tervention study in a neonatal intensive

Table 1. Cochrane methodology: Levels of evidence and grades of recommendations, November 23, 1999

Grade of

Recommendation

Level of

Evidence Therapy/Prevention, Etiology/Harm Prognosis Diagnosis

A 1a SR (with homogeneitya) of RCTs SR (with homogeneity) of inception

cohort studies, or a CPG

validated on a test set

SR (with homogeneity) of level 1

diagnostic studies, or a CPG validated

on a test set1b Individual RCT (with narrow

confidence interval)

Individual inception cohort study

with 80% follow-up

Independent blind comparison of an

appropriate spectrum of consecutive

patients, all of whom have undergone

both the diagnostic test and the

reference standard1c All or nonec All or none case seriesd Absolute SpPins and SnNouts

B 2a SR (with homogeneity) of cohort

studies

SR (with homogeneity) of either

retrospective cohort studies or

untreated control groups in RCTs

SR (with homogeneity) of level 2

diagnostic studies

2b Individual cohort study (including

low-quality RCTs; e.g., 80%

follow-up)

Retrospective cohort study or

follow-up of untreated control

patients in an RCT, or CPG not

validated in a test set

Any of the following:1. Independent blind or objective

comparison2. Study performed in a set of

nonconsecutive patients, or confined to

a narrow spectrum of study individuals

(or both) all of whom have undergone

both the diagnostic test and the

reference standard3. A diagnostic CPG not validated in a test

set2c Outcomes research Outcomes research3a SR (with homogeneity) of

case-control studies3b Individual case-control study Independent blind comparison of an

appropriate spectrum, but the reference

standard was not applied to all study

patientsC 4 Case-series (and poor-quality

cohort and case-control studiese)

Case-series (and poor-quality

prognostic cohort studiesf)

Any of the following: Reference standard was unobjective,

unblinded, or not Independent Positive and negative tests were verified

using separate reference standards Study was performed in an inappropriate

spectrum of patientsD 5 Expert opinion without explicit

critical appraisal, or based on

physiology, bench research, or

first principles

Expert opinion without explicit

critical appraisal, or based on

physiology, bench research, or

first principles

Expert opinion without explicit critical

appraisal, or based on physiology, bench

research, or first principles

SR, systematic review; RCT, randomized controlled trial; CPG, Clinical Prediction Guide; SpPins, diagnostic finding whose specificity is so high that

a positive result rules in the diagnosis; SnNout, diagnostic finding whose sensitivity is so high that a negative result rules out the diagnosis.aBy homogeneity we mean a systematic review that is free of worrisome variations (heterogeneity) in the directions and degrees of results between

individual studies. Not all systematic reviews with statistically significant heterogeneity need be worrisome, and not all worrisome heterogeneity need be

statistically significant. Studies displaying a worrisome heterogeneity should be tagged with a - at the end of their designated level. cMet when all patients

died before the prescription became available, but some now survive it, or when some patients died before the prescription became available, but none now

die on its. dMet when there are no reports of anyone with this condition ever avoiding (all) or suffering from (none) a particular outcome (such as death).eBy poor-quality cohort study we mean one that failed to clearly define comparison groups and/or failed to measure exposures and outcomes in the same

(preferably blinded), objective way in both exposed and nonexposed individuals and/or failed to identify or appropriately control known confounders and/or

failed to carry out a sufficiently long and complete follow-up of patients. By poor-quality case-control study we mean one that failed to clearly definecomparison groups and/or failed to measure exposures and outcomes in the same blinded, objective way in both cases and controls and/or failed to identify

or appropriately control known confounders. fBy poor-quality prognostic cohort study we mean one in which sampling was biased in favor of patients who

already had the target outcome, or the measurement of outcomes was acccomplished in 80% of study patients, or outcomes were determined in an

unblinded, nonobjective way, or there was no correction for confounding factors.



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care unit (NICU) found that meetings be-tween healthcare professionals and par-ents using the shared decision-makingmodel produced fewer decision-makingconflicts, created fewer unrealistic paren-tal expectations, and improved collabora-tion between providers and family mem-bers. The model also helped parents gaina more accurate understanding of theirchilds medical condition (24).

Health information privacy regula-tions regarding the choice and number offamily members involved in discussionsare considered while acting in the bestinterest of the patient. During a familymeeting, once all stakeholders arepresent, family members should be askedopen-ended questions about what theyunderstand about their loved ones con-dition, how they are coping, and whatthey fear (25). Once family members havespoken, care providers should repeatwhat they have heard. Reflective iteration

allows family members to correct anymisunderstandings; it also fosters trust inthe healthcare team and the decision-making process.

After all family members have spokenand verified that practitioners have heardthem correctly, practitioners should pro-vide clear and honest information regard-ing prognosis (20, 2638) and then allowample opportunity for questions. Thegoal is to enable families to clarify thedecisions they face and practitioners tounderstand the values and experiences of

family members.In the case of an incompetent patient

who was previously competent, it may behelpful to ask, If your loved one wereable to speak for herself, what do youthink she would want us to do for her?Such a question helps family membersframe the question from the patientsperspective (25).

When decisions must be made, it isbest to strive for consensus. Respect andacknowledge what each decision makerbrings to the table. Together, all present

should determine the best course of ac-tion (25). When all stakeholders have ex-pressed their opinions and feel that theyhave been heard, they are generally will-ing to support the group decision, evenwhen it runs counter to their own views.

Recommendation 1: Decision making inthe ICU is based on a partnership be-tween the patient, his or her appointedsurrogate, and the multiprofessionalteam. Grade of Recommendation: B

Recommendation 2: Practitionersfully disclose the patients current sta-tus and prognosis to designated surro-gates and clearly explain all reasonablemanagement options. Grade of Rec-ommendation: B (see recommenda-tions 3 and 4 in the Cultural Supportof the Family section)Recommendation 3: ICU caregiversstrive to understand the level of life-

sustaining therapies desired by pa-tients, either directly from those pa-tients or via their surrogates. Grade ofRecommendation: DRecommendation 4: Family meetingswith the multiprofessional team beginwithin 24 48 hrs after ICU admissionand are repeated as dictated by thecondition of the patient with inputfrom all pertinent members of themultiprofessional team. Grade of Rec-ommendation: B (see also Staff StressRelated to Family Interactions sec-tion)Recommendation 5: ICU caregivers re-ceive training in communication, con-flict management, and meeting facilita-tion skills. Grade of Recommendation: C

Family Coping

Having a loved one in an ICU is stress-ful for family members. The literatureidentifies a variety of stress factors, aswell as factors that do not correlate withfamily stress or anxiety. For example, sur-

veys that looked at cultural differences instress levels found none (3943).

The use of mechanical ventilation wasnot found to be predictive of stress oranxiety for family members; objectiveacuity scores remained constant whetheror not the patient was on a ventilator(44 47). Stress levels do not seem tolessen with longer ICU stays (48).

Families of ICU patients have a varietyof needs: Stress levels rise when these arenot met. High on the list is the need tomaintain hope; to have questions an-

swered honestly, in terms families canunderstand; to be notified promptly ofany changes in the patients status; and tobe allowed to visit the patient anytime.Families also require assurance that theirloved one is receiving quality care (4963). The definition of hope may extendpast the absence of death and includehope for a pain-free and dignified deathor hope for more time or quality timetogether. Environmental amenities werefound to be low on the list of family needs

(60, 64). The transfer from the ICU to thefloor induces stress on the patient andfamily. Written information provided tofamilies may ease the transition out ofthe ICU (65). Computerized educationservices such as access to the SCCM-endorsed www.icu-usa.com may helpmeet some family needs for information(66).

Families find it frustrating and confus-

ing to deal with a host of healthcare pro-viders in the ICU. Family dissatisfaction in-creases if more than two ICU physicianscare for the patient or if the patient has adifferent nurse from one day to the next(67, 68). Nurses need more training inassessing stress levels and anticipatingfamily needs. In studies to determinewhether family needs were being met,nurses were generally only about 50%accurate in predicting family needs (49,50, 52, 6971).

Factors associated with the higheststress for parents of neonatal and pediat-ric patients include disruption of normalinteractions with the child, changes inthe childs behavior or emotions, parentsinability to comfort the child, having achild undergo painful procedures, andchanges in the childs appearance (7276). Parents experience stress long aftertheir children are discharged. Two pedi-atric studies found that parents stress-related symptoms persist as long as 6months postdischarge. A neonatal studyshowed that mothers of high-risk, verylow birth weight infants experienced psy-

chological distress even when the childreached 2 years of age (7779).

Children of ICU patients also experi-ence anxiety. One study showed that chil-dren of ICU patients fear their parentsdeath and that these fears lessen whenchildren were allowed to visit (80).

High levels of anxiety and depressionin family members may affect their abilityto make end-of-life decisions (81). Theuse of problem-focused coping strategiesand social supports lowers stress for fam-ily members (82, 83), although formal

support groups seem to be more effectivefor parents of children in intensive carethan for families of adult patients.

Two interventional studies evaluatingfamilies of adult patients showed no sta-tistical difference in stress reduction infamily members who attended a supportgroup (84, 85). A third study showed a50% reduction in state anxiety (anxietycaused by an experience) for family mem-bers who attended a support group (com-pared with a control group) (86). Another



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small pediatric study showed that paren-tal anxiety was reduced if parents wereallowed to observe and be with their childwhile undergoing procedures (87).

Parent education can be very helpfulin minimizing the stress of a pediatricintensive care unit (PICU) or NICU ad-mission. In a randomized interventionalpilot study, parents received written andaudiotaped information about infant and

child behavior while in the ICU, parent-child interactions, and therapy. Com-pared with the control group, study par-ents had less stress, fewer depressivesymptoms, and better bonding and inter-actions with their child (88, 89). Otherforms of parent support have also beenshown to reduce stress and improve par-ent-infant interactions, including indi-vidualized and formalized family-basedinterventions, training in coping strate-gies and stress management techniques,pairing of parents of current NICU or

PICU patients with parents of former pa-tients, and journal writing (9095).

It is now known that families of criti-cally ill patients of all ages may developanxiety, depression, and posttraumaticstress syndrome (96105). One interven-tion study has shown that prospectivediaries with review and follow-up mayimprove communication and goal settingand provide comfort (96). In a study ofparents of children in the PICU, no rela-tionship was found between incidence ofposttraumatic stress disorder in the par-

ent and severity of illness (100). Althoughnone of the literature reviewed spoke tothe issue of family involvement in care,the authors agree by consensus that lib-eral inclusion into care for those whodesire it should be allowed. (See alsoFamily Presence on Rounds and FamilyEnvironment of Care and Family Visita-tion.)

Recommendation 1: ICU staff receivetraining in how to assess family needsand family members stress and anxiety

levels. Grade of Recommendation: CRecommendation 2: Nursing and phy-sician staff assigned to each patientare as consistent as possible. Familymembers receive regular updates inlanguage they can understand, but thenumber of health professionals whoprovide information is kept to a min-imum. Grade of Recommendation: CRecommendation 3: Families are en-couraged to provide as much care asthe patients condition will allow and

they are comfortable providing. Gradeof Recommendation: DRecommendation 4: Family membersare provided with ample informationin a variety of formats on emotionalneeds in the ICU and methods appro-priate to comfort and assist in care.Grade of Recommendation: CRecommendation 5: Family support isprovided by the multiprofessional

team, including social workers, clergy,nursing, medicine, and parent supportgroups. Grade of Recommendation: C

Staff Stress Related to Family

Interactions

The literature reviewed for theseguidelines included articles representingthe perspectives of physicians, nurses,support staff, and families. Survey re-sults, qualitative grounded theory, andopinion pieces described how particularinstitutions handled staff stress (106 153).

Poor communication is a majorsource of stress for staff. One studyshowed that nursing stress increaseswhen nurses do not have enough infor-mation about a case to answer questionsfrom the family and also when commu-nication is poor between the physicianand the family (152).

In a patient-centered environment,multiprofessional care is the norm. Withmany people involved in and concerned

about the patients care, it is important toestablish clear lines of communication,both among various members of thehealthcare team and between the teamand the family.

Educating families on how the ICUworks with respect to visiting hours,when rounds occur, and when and howthe physician can be reached can alsoreduce friction. It is useful to identify afamily spokesperson and the family mem-ber who will be making decisions on thepatients behalf as soon as a patient is

admitted to the ICU.Routine communication from the ICU

physician, both with family representa-tives and with the healthcare team, isindicated to clarify treatment goals andduties of various team members. Familyrepresentatives should be introduced tothe care team, and the roles played byeach team member should be clearly ex-plained.

The healthcare team includes the ICUphysician, consulting physicians (includ-

ing the primary care physician, if avail-able), nurses, social worker, chaplain, andappropriate additional ancillary staff. Forexample, a respiratory therapist shouldbe included in discussions with the familyregarding ventilated patients. Involve-ment of clergy can help the staff under-stand different cultures and belief sys-tems and thus prevent or relieve stress. Abroadly inclusive multiprofessional team

allows healthcare providers to take anorganized approach to achieving com-mon goals, which may also prevent oreliminate stress (152).

Well-planned routine care conferencesare important to provide objective infor-mation, to share opinions, and to reachconsensus on common goals. These con-ferences may be held for the purpose ofproviding status reports or for making atreatment decision. All team membersshould be invited to discuss the case fromtheir perspective, which educates eachmember of the team. Collaborative careplanning may resolve or defuse conflictsbetween the family and the team orwithin the team, thereby reducing staffstress (121, 126, 127, 148).

In addition to care conferences, ICUstaff members need the opportunity todecompress and confront feelings aboutpatients and their outcomes. An unex-pected adverse event or medical errormay trigger the need for a staff debrief-ing, and the resuscitation team may re-quire routine debriefings. A survey of pe-diatric nurses found that stress increases

when the decision to continue treatmentis against the nurses own values or whena nurse feels powerless to effect a change(150). Nurses in such a position need anopportunity to work through these con-flicts. The American Association of Criti-cal-Care Nurses has published a whitepaper on moral distress that describeshow to handle these situations (153).

One study demonstrated that stressincreases when staff expectations for agood death are not met. Factors associ-ated with perceptions of a good death

include good rapport and support amongteam members, good communication,timely anticipation of symptoms and ad-equate time to prepare for the patientsdeath, and good relationships with thepatient and family (148). Training in griefcounseling may be useful for nursingstaff; lack of counseling skills has beenidentified as a stress factor for nurses(152). Even when death is perceived as agood death, the death of a patient may beextremely unsettling. The routine use of



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support groups has not been seen as ef-fective in reducing staff stress (151).However, timely debriefing after a criticalincident may be helpful, and the servicesof trained personnel such as psycholo-gists, medical social workers, palliativecare clinicians, or hospice grief counsel-ors may be very beneficial. (See also Fam-ily Presence at Resuscitation.)

Recommendation 1: The multipro-

fessional team is kept informed oftreatment goals so that the messagesgiven to the family are consistent,thereby reducing friction betweenteam members and between the teamand family. Grade of Recommenda-tion: CRecommendation 2: A mechanism iscreated whereby all staff membersmay request a debriefing to voice con-cerns with the treatment plan, decom-press, vent feelings, or grieve. Grade ofRecommendation: C

Cultural Support of the Family

Culture is a pattern of learned beliefs,shared values, and behavior; it includeslanguage, styles of communication, prac-tices, customs, and views on roles andrelationships. The concept goes beyondrace, ethnic background, and country oforigin (154). Over the past 2 decades,600 citations have documented dispar-ities in access to care and health statusbetween members of the dominant cul-

ture and members of racial and ethnicminority groups in the United States(155157).

Among the factors that may affect dis-parities are lack of trust in the healthcaresystem and patients spiritual and cul-tural beliefs (158). For example, in astudy of a Chinese community in To-ronto, respondents rejected advance di-rectives because they believed that nega-tive outcomes can result from negativethoughts (159). A recent study showedimportant differences between African

Americans and Caucasians regarding ad-vance care planning and end-of-life deci-sion making. Caucasians were morelikely to discuss withdrawal of life sup-port and other treatment options fromthe perspective of a desire not to prolongthe dying process. In contrast, treatmentdecisions for African Americans weremore likely to be based on the desire toprolong life (160). Differences in health-care proxy completion rates across Cau-casian, African American, and Hispanic

elderly populations appear related to re-versible barriers such as lack of knowl-edge and perceived irrelevance of advancedirectives (161).

An eff ect ive rel ati ons hip bet wee nhealthcare providers and their patientsand families has five key components:personal self-awareness, knowledge of thepatients and familys cultural beliefs, cul-tural assessment, dynamics of difference,

and effective communication (162).Studies have demonstrated that com-munication between healthcare providerand patient may be affected by race. Al-though patients are more likely to besatisfied by a visit to a healthcare providerof the same race (163), race concordancemay not always be achievable. Knowingthis, providers can be trained in interper-sonal interpretation: that is, to look be-neath the surface when communicatingwith someone from another culture, tolisten actively, and to seek out the realmeaning underlying a patients state-ments (164).

Interpreter choice is important whendealing with patients who speak a differ-ent language. Children and family mem-bers should not be placed in the difficultand sometimes embarrassing situation ofinterpreting, as this may compromise thepatients confidentiality. The complexmedical issues that arise in the ICU envi-ronment require a trained interpreter tocommunicate effectively. Availability ofprofessional interpretive services is regu-lated by the Joint Commission on Accred-

itation of Healthcare Organizations andmany state agencies (165). It has beenfound that it may be helpful to have apreliminary meeting with the medical in-terpreter, who is viewed as a member ofthe multiprofessional team (166).

Ethical principles applied to end-of-life care, such as autonomy, nonmalefi-cence, beneficence, and truth telling,should accommodate varying culturalperspectives. North American ICU medi-cine was founded on the basis of Westernbiomedical values and assumptions about

the beginning and end of life, includingthe acceptance of brain death as death.These are not universally accepted crite-ria (167).

Similarly, American bioethics arebased on Western philosophical princi-ples that place a high value on individualautonomy (168). Patient autonomy ismeaningful only if one has access totimely information about ones clinicalcondition and prognosis. Yet some fami-lies consider it detrimental to tell the

patient the truth (169). Many cultures,including Asian, Mexican, Middle East-ern, and African American (170), view theindividual not as an autonomous entitybut as part of a network of family andsocial relationships. In some cultures,family members are expected to bear thebad news of terminal illness; the patientsreceipt of such news is believed to hastendeath. Being frank with people from

these cultures can create mistrust or hos-tility that may not be ameliorated for theduration of care (170). Respecting therequest of the patient to direct informa-tion to an adult child or spouse, informedrefusal, is advocated.

This professional society has empha-sized family-centered, culturally sensi-tive, and relevant ICU care (171). Diffi-culty arises when the values of the careprovider are in conflict with those of thefamily. For example, this may occur whena family member requests that pain med-ication not be given (172).

Although it is important for both theICU staff and the patient to feel that theirmoral principles are not violated, balanc-ing conflicting principles can be chal-lenging. Kagawa-Singer and Blackhall(170) suggested a three-fold method todetermine the patients desire for disclo-sure and how much clinical informationto disclose:

Indirect discussion: Some patients inyour situation would rather have thedoctor discuss details of their care

with their family. What do you pre-fer? Discussing a hypothetical case: Somepeople who have your condition havefound it helpful to consider severaloptions for their care including . . .Watching for nonverbal cues such asfacial expressions and body position toassess the impact of the discussion onthe patient.

This method may be used to discerncultural differences in recommended ageof assent, consent lineage, and requests

for informed refusal of information.Whenever allowable by law, cultural pref-erences are honored. When the differencein cultural values causes moral distress,an ethics consult is advised.

Recommendation 1: On request orwhen conflict arises due to culturaldifferences in values, when there is achoice of providers, the providers cul-ture is matched to the patients. Gradeof Recommendation: C



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Recommendation 2: Healthcare pro-fessionals receive education to provideculturally competent care. Grade ofRecommendation: CRecommendation 3: The patients de-sire to be told the truth about his orher clinical situation is determined bya routine assessment. Grade of Rec-ommendation: DRecommendation 4: For patients who

are actively engaged in decision mak-ing about their care, their desire fortruth takes precedence over that oftheir family when there is a conflict.Grade of Recommendation: DRecommendation 5: When requestingassent for procedures, cultural normsare considered and respected when-ever possible. Grade of Recommenda-tion: DRecommendation 6: If a patient makesan informed refusal of information,the request is respected. Subsequentinformation about the patients illnessand its prognosis is delivered in a cul-turally relevant and appropriate man-ner as indicated by the patient. Theoutcome of such discussions is docu-mented in the patients medicalrecord. Grade of Recommendation: D

Spiritual and Religious Support

Opinion pieces, historical reviews, andinstrument design and validation studieswere reviewed but excluded as references.

Four broad categories of articles in-formed these guidelines: healthcare pro-vider surveys, patient surveys, outcomestudies, and meta-analyses of the impactof spirituality and religion on health.These studies primarily involved patientsoutside intensive care units and indicatethe need for ICU-specific studies. The fol-lowing discussion first reviews findingsrelated to practitioners and then reviewsfindings on patients needs and prefer-ences for spiritual and religious support.

Practitioner Attitudes and Practices.

Most studies surveyed family practice andinternal medicine physicians; some in-cluded nurses, social workers, and phys-ical therapists. Researchers asked practi-tioners to rank their level of religiosity,how actively they examine matters offaith in their patient histories, andwhether they would pray with patients ifrequested. Although studies from the1960s and 1970s indicate a level of agnos-ticism or atheism among physicianshigher than that of the general public,

recent studies indicate a level of religios-ity closer to that of the general public.

Most physicians do not conduct spiri-tual histories, nor do they feel comfort-able praying with their patients unlessrequested to do so; even then, a substan-tial number feel uncomfortable with sucha proposal. The more religious the physi-cian, the greater the probability that heor she would pray for or with a hospital-

ized or dying patient (173). Even physi-cians with a relatively high self-reportedlevel of spiritual awareness tend to referpatients to a chaplain rather than addressspiritual concerns themselves (174).Even though religiosity among physi-cians is increasing, the discomfort of phy-sicians with addressing matters of faithmay stem from the fact that physicianstend to have a lower degree of spiritualitythan their patients (175177).

Academic pediatric attending physi-cians and residents surveyed in a single-site urban setting appeared to be morewilling to inquire into family spiritualand religious dynamics than physicianscaring for adults. Residents felt it wasmore appropriate to pray with patientsthan did their attending physicians. Thedegree of self-ranked religiosity or spiritu-ality correlated with the belief that faithplays a role in healing and enhances theclinical relationship. Regardless of theirown views, 90% of pediatricians felt itappropriate to discuss religion or spiritual-ity during severe illness and crises (178).

In one study it was found that nurses

held a positive view of religions impacton health. More than 90% felt that beliefin religion is an effective therapy, and themajority were willing to consider prayingwith their patients. Barriers to teachingabout religion, health, and complementarypractices included lack of evidence of effi-cacy and inadequate teaching skills (179).

Physical therapists acknowledge theimportance of religion and spirituality inthe lives of their patients but also reportthey lack the skills to address these issues(180).

A nat ion al sur vey indicated that,among all healthcare practitioners, socialworkers were the most comfortable ap-proaching patients about religion, spiri-tuality, and end-of-life issues and also hadthe skills to do so (181), even thoughsocial workers and mental healthcareworkers self-report as less religious orspiritual than their patients (177). Im-pediments to patient interaction were re-lated to incompatible personal beliefs,cross-cultural issues, lack of familiarity

with non-Judeo-Christian traditions, andconflicting values on controversial issuessuch as assisted suicide and euthanasia.

Patient Attitudes and Needs Related toSpirituality and Religion. The impact ofreligious and spiritual beliefs on patientshealthcare decisions has not been exam-ined extensively in the medical literature.Studies reviewed for this discussion, al-though limited in number, were hetero-

geneous, including AIDS patients, cancerpatients, inpatients, and outpatients.Studies indicate that the older the patientand the more infirm with a chronic ill-ness, the greater the level of self-perceived religiosity or spirituality. Inclinic-based studies, approximately 50%of patients tend to consider themselvesreligious or spiritual (181, 182). In con-trast, among mental health outpatientsand residents of nursing homes, 90%consider themselves to be religious orspiritual (183, 184).

Age and declining health have an in-verse relationship on the use of religiousor spiritual resources to cope and main-tain a positive outlook (185187). Thisalso held true for families of sick childrenin a single-center site (188). Numerousstudies confirmed that the sicker the pa-tient, the greater the likelihood that he orshe would want the physician to inquireinto the impact of spiritual beliefs onhealthcare issues and, in some instances(in particular as death approaches), topray for or with the patient.

A survey by MacKenzie et al. (184)

suggested that in this highly religiousand spiritual population, patients be-lieved in prayer and divine interventionto promote health, while also acceptingmedicine and physicians care. In a sur-vey of outpatients with stable health is-sues, only 45% said that spirituality orreligion influences healthcare decisionmaking. Most, regardless of self-rankedspirituality or religiosity, would welcomephysician inquiry about matters of faith ifworded in a way patients did not regard asintrusive (189).

Religion or spirituality had a positiveimpact on AIDS patients perspective onlife and death and was correlated withgreater willingness to discuss resuscita-tion status (188). Two barriers to discuss-ing resuscitation status were fear of deathand guilt associated with the illness.

Whereas a majority of patients wantedphysicians to be aware of their religiousviews, patients desire for healthcareworkers to pray for or with them varied.The sicker the patient, and the less intru-



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sive the inquiry, the more patientswanted their physician to inquire abouttheir religious views or pray with them(182). This held true in a study of hospicepatients as well: patients wanted physi-cians to be aware of the role of spiritualityin their lives but did not want their phy-sicians to be preachy or judgmental(190). An inpatient study suggested that auniform majority of patients wanted

nurses to inquire respectfully into patientspirituality and pray with them (191). Aparish-based model of nursing visits,which incorporated a holistic view of pa-tient concerns, including religion andspirituality, was well received by patientsin a rural region of the southeasternUnited States (192).

These authors concur that all mem-bers of the interdisciplinary team need torecognize the impact of spirituality onthe patient/family ICU experience, espe-cially with regard to matters of faith at

the end of life. Failure to have appropri-ately trained personnel explore these is-sues may create barriers to a meaningfuldiscussion of resuscitation status or thepossibility of hospice care. The chap-laincy service carries the lead position inproviding spiritual assessment and care,but all team members have a role in in-corporating spiritually appropriate careto those patients and families who havedisclosed preferences.

Training ICU clinicians to incorporatespiritual care of the patient and familyinto clinical practice is an important stepin addressing the goal of caring for thewhole person (193). Training may in-clude how to assess spirituality, how touse findings from the spiritual assess-ment in the plan of care, and participat-ing in prayer with the patient on request.Training is provided either in the clinicalsetting or as part of formalized academiccourse work. Regional concentrations ofvarious cultural and religious groupsshould be considered when designing andproviding training.

Recommendation 1: Spiritual needs ofthe patient are assessed by the health-care team, and findings that affecthealth and healing incorporated intothe plan of care. Grade of Recommen-dation: CRecommendation 2: Physicians willreview reports of ancillary team mem-bers such as chaplains, social workers,and nurses to integrate their perspec-tives into patient care. Chaplains andsocial workers are trained to explore

spiritual issues and can provide inten-sivists with valuable insights into thepatients condition. Grade of Recom-mendation: DRecommendation 3: Nurses and doc-tors receive training in awareness ofspiritual and religious issues so thatthey may properly assess patients andmake use of findings in the plan ofcare written by social workers and chap-

lains. Grade of Recommendation: CRecommendation 4: If a patient re-quests that a healthcare provider praywith him or her, and the healthcareworker agrees to and feels comfortablewith it, the request is honored andconsidered to be part of the spectrumof holistic intensive care. Grade ofRecommendation: D

Family Visitation

With healthcar e con sumers moreknowledgeable about their health, avail-able care, and their healthcare rights, de-mand for access to hospitalized lovedones is increasing. As the healthcare in-dustry strives for a more family friendlyenvironment of care, great efforts havebeen made to evaluate the needs of pa-tients and families as well as attitudes andbehaviors of nurses and other membersof the healthcare team (194209).

Flexible (open) visitation policies andregular reports on patient status answersome of the significant needs of families

with loved ones in the critical care unit.Nurses attitudes toward visitation are in-consistent (195, 199, 202, 204, 210, 211).Some nurses allow more liberal familyvisitation privileges than the unit policy(210) dictates, whereas others reducefamily visiting time based on patient anx-iety. Still others base family visiting onthe nursing schedule, restricting visitswhen the unit is busy (199). Many nursesexpressed a belief that patients need vis-itors; others felt the room was simply toosmall to allow for visitation and patient

care at the same time (195, 211). In astudy completed in Scotland (202), pedi-atric RNs perceived themselves as familyfriendly but were very resistant to allow-ing parents in the unit.

Nurses attitudes notwithstanding, thepreponderance of the literature supportsgreater flexibility in ICU visitation poli-cies. Descriptive studies of the physio-logic effects of visiting on mental status,intracranial pressure, heart rate, and ec-topy (212216) demonstrated no physio-

logic rationale for restricting visiting. Infact, in seven of 24 patients with neuro-logic injuries, family visits produced asignificant positive effect, measured bydecrease in intracranial pressure. Oneethnographic study has demonstratedthat family visiting may help the nurse toget to know the patient and that familymay be helpful in contributing to the careof the patient (217).

Several interventional studies usedsatisfaction data to document the effectsof changes in visitation policies. Threestudies examined an increase in time al-lowed for visitation (215, 218, 219), andtwo focused on patient-controlled visita-tion (219, 220). In four studies both vis-itors and nursing staff reported increasedsatisfaction, although families expresseda need for greater flexibility and moreaccess to their loved ones (218, 219, 221,222). Increasing patient control over vis-iting correlated with greater patient sat-

isfaction but also with requests by thefamily for increased access (220, 223).

Several studies were based in pediatricor neonatal environments. Two assessedthe behavior of siblings of newborns (224,225). One study compared two ICUs, oneallowing sibling visitation and one pro-hibiting it (224). The data suggest thatsibling visitation is not likely to be harm-ful and might be beneficial to the patientand the family. The other study foundthat children who were allowed to visitshowed less negative behavior and more

knowledge about their critically ill siblingthan children who were not allowed tovisit (225). Two studies supported thevalue of participating in a sibling educa-tion program before visitation (221, 226).References showed no increase in neona-tal infection rates due to sibling visits(227, 228).

Many people have strong attachmentsto their pets. There is no evidence thatpets that are clean and properly immu-nized should be restricted from the ICUenvironment (229232). Animal-assistedtherapy is a goal-directed intervention inwhich an animal is incorporated as anintegral part of clinical treatment. Ani-mal-assisted therapy is delivered or di-rected by a healthcare professional whodemonstrates expertise in the clinical ap-plications of human-animal interactions(233). Animal-assisted activities are deliv-ered by a professional, paraprofessional,or volunteer and provide motivationaland recreational benefits (233).



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Recommendation 1: Open visitation inthe adult intensive care environmentallows flexibility for patients and fami-lies and is determined on a case-by-casebasis. Grade of Recommendation: BRecommendation 2: The patient, fam-ily, and nurse determine the visitationschedule collectively; the scheduletakes into account the best interest ofthe patient. Grade of Recommenda-

tion: CRecommendation 3: Visitation in thePICU and NICU is open to parents andguardians 24 hrs a day. Grade of Rec-ommendation: CRecommendation 4: After participa-tion in a previsit education process,visitation by siblings in the PICU andNICU is allowed with parental ap-proval. Grade of Recommendation: CRecommendation 5: Caution is takenwith sibling visits to immunocompro-mised infants; with physician ap-proval, sibling visits should be consid-ered. Grade of Recommendation: DRecommendation 6: Pets that areclean and properly immunized are notrestricted from visiting the ICU.Guidelines are created to provide ani-mal-assisted therapy and animal-assisted activities for patients. Gradeof Recommendation: B

Family Environment of Care

The articles reviewed for these guide-

lines included a summary by Roger Ul-rich et al. (234) of 600 peer-reviewedstudies conducted since 1968. The bulk ofthe studies reviewed to produce that doc-ument pertained to research performedon patient (not family) outcomes. In ad-dition, the architectural literature de-scribes, color, lighting, ventilation sys-tems, and floor coverings as having thepotential to affect patient outcomes (235251). As visitation policies become moreflexible in the patient-centered ICU, theenvironment of care has a growing im-

pact on families. Further studies are in-dicated to validate that the research find-ings related to impact of color, lighting,noise, music, laughter, arrangement offurniture, view, and artwork are general-izable to family (vs. patient) biopsychoso-cial well-being.

Ulrich et al. identified 120 studieslinking infection rates to the built envi-ronment. Transmission of infection topatients generally occurs through tworoutes: airborne and direct contact. The

design of the physical environment af-fects both transmission routes. The JointCommission on Accreditation of Health-care Organizations, the American Insti-tute of Architects, and the American So-ciety of Heating, Refrigerating and Air-conditioning Engineers (252254) allprovide guidelines for ventilation systemsand facilities design approaches to reduc-ing infection as well as for enhancing

patient and family privacy and comfort(252257).

The Health Insurance Portability andAccountability Act created new incentivesfor redesigning patient care areas to en-hance privacy. With increased family ac-cess to the critical care environmentthrough open visiting, privacy becomes afamily issue as well. Several articles ex-amine the Health Insurance Portabilityand Accountability Acts impact on thestructure of new facilities (236, 240, 241,258, 259). A study by Barlas et al. (260)

suggested that lack of privacy can affectpatient safety. The study found that wallsseparating patient rooms, rather thancurtains, provide more privacy and en-courage patient to speak more directlyabout important personal information.Private rooms are also more conducive tofamily involvement in patient care. Pri-vate rooms decrease patient visibility.Measures to maintain patient safety whileenhancing privacy are indicated (261).

Patient, family, and caregiver safety isthe focus of several articles encouraging

the use of green, ergonomically effi-cient furniture to reduce back stress, fa-tigue, and other injuries in the hospitalenvironment (262266). Evidence indi-cates that social interactions increasewhen lounges, day rooms, and waitingrooms are provided with furniture ar-ranged in small flexible groupings (267269). Facilities design can reduce noise,which Johnson (270, 271) in 2001 dem-onstrated has a negative impact on pa-tient outcomes. Noise decreases oxygensaturation and respiratory rates, inter-

feres with sleep, and also elevates bloodpressure and heart rate (272279). WorldHealth Organization guidelines for ac-ceptable background noise levels are 35dB, not to exceed 40 dB. Backgroundnoise levels in hospitals are typically4568 dB, with peaks frequently exceed-ing 8590 dB (234). Hospital noise comesfrom two primary sources: equipmentand environmental surfaces. Hospitalfloors, ceilings, and walls are typicallyhard surfaces that reflect sound and thus

contribute greatly to unacceptable levelsof background noise (234).

Since the days of Florence Nightin-gale, who strongly believed in naturallight as adjunct to the hygienic environ-ment, light has been known to have animpact on patient outcomes. In 1996Beauchemin and Hays (280) found thatpatients hospitalized for severe depres-sion reduced their stays by an average of

3.67 days if assigned to a sunny ratherthan a dark room. A randomized prospec-tive study by Walch et al. (281) in 2004found that patients exposed to increasedsunlight reported less stress and pain;they also required 22% less analgesicmedication per hour, reducing pain med-ication costs by 20%.

Several articles provide the businesscase for incorporating environment ofcare guidelines and recommendationsinto the design of new facilities and theredesign of older facilities (244, 257, 262,

282286). For example, as hospital facil-ities become more complex, poor way-finding systems can be extremely costly,in terms of both patient and family satis-faction and hard dollars. A 1990 study byZimring (287) at a major regional 604-bed tertiary-care hospital reported thatan ineffective way-finding system cost themain hospital about $220,000 per year, or$448 per bed; about 4,500 annual staffhours were required just to provide direc-tions. Nelson-Schulman (288) in 19831984 found that patients who had thebenefit of a well-designed informationsystem on reaching the admitting area,such as a welcome sign, hospital infor-mation booklet, patient letter, and orien-tation aids, were more self-reliant, madefewer demands on staff, and reportedhigher rates of satisfaction with the hos-pital.

As more is learned about the effects ofthe environment of care on patients andfamilies, efforts will increase to includefamilies in the design process for newhospital facilities. New facilities not onlywill be more comforting to patients and

families but also will be more energy ef-ficient and more ergonomic and will pro-vide for greater patient/family control ofthe environment.

Recommendation 1: Improve patientconfidentiality, privacy, and socialsupport by building ICUs with single-bed rooms that include space for fam-ily. Grade of Recommendation: BRecommendation 2: Develop signsand way-finding systems to reduce



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stress on patients, families, and visi-tors. Grade of Recommendation: BRecommendation 3: Replicate patientresearch regarding the effect of furni-ture arrangement, natural lighting,access to nature, positive distractions(music, laughter, art), and reducednoise levels on the biopsychosocialhealth of family members visiting inthe ICU. Grade of Recommendation: D

Family Presence on Rounds

One randomized study demonstratedthat parents prefer to be present on dailypediatric oncology rounds, on thegrounds that inclusion affords them abetter opportunity to obtain information.Although parents felt that rounds weregenerally upsetting to children, the chil-dren themselves did not support this be-lief (289). Another randomized studyshowed a trend toward increased patientsatisfaction and improved physician-patient communication when patients ona medical ward were included in rounds,although the trend was not statisticallysignificant (290).

One cohort study demonstrated that94% of patients on a medical ward viewedtheir participation in rounds as a positiveexperience and felt that it should con-tinue. The majority (66%) stated thatparticipation in rounds improved com-munication with healthcare providers(291). Another cohort study demon-

strated that 85% of patients on a medicalward preferred to be present on rounds(292).

One opinion publication reported bothpro and con opinions on parental pres-ence on rounds in a NICU (293). Prosincluded improving respectful informa-tion to parents, family sharing of patientcondition/likes/dislikes with the health-care team, efficiency of time spent withparents, and decreased parental anxiety.Cons included perception of not havingenough time to answer parental ques-

tions during rounds, confidentiality, andcrowding. Three letters to the editor ar-gued in favor of including patients onmedical ward rounds (294296), one ar-gued against inclusion of patients (297),and one discussed both the pros and consof patient inclusion (298).

Recognizing that the topic of familypresence in rounds is the least studied ofany section within this document, theseauthors concur that family participationin rounds is beneficial. In our collective

experience the burden imposed by thechallenges related to privacy and teach-ing of the resident teams is outweighedby the greater benefit of improving bidi-rectional communication between fami-lies and the healthcare team.

Recommendation 1: Parents or guard-ians of children in the ICU are giventhe opportunity to participate inrounds. Grade of Recommendation: B

(randomized controlled trial was doneon general medical patients and notICU patients)Recommendation 2: Whenever possi-ble, adult patients or surrogate deci-sion makers are given the opportunityto participate in rounds. Grade of Rec-ommendation: BRecommendation 3: Pediatric patientsin the ICU are given the opportunityto participate in rounds with parentalpermission. Grade of Recommenda-tion: D

Recommendation 4: Patients and fam-ily members who participate in roundsare given the opportunity to ask ques-tions to clarify information discussedon rounds. Grade of Recommenda-tion: D

Family Presence at

Resuscitation

In family presence at resuscitation(FPR), a limited number of family mem-bers, usually one, are present in the re-

suscitation room during CPR or otherresuscitation procedures. The literaturereviewed for these guidelines includedone systematic review (299), one ran-domized controlled trial dealing withfamily stress (300), research-based stud-ies (301, 302), family and staff surveys(303315), and a variety of review arti-cles, descriptive reports, and expert opin-ions.

Most of the literature deals with sud-den death and trauma resuscitation inthe emergency department and focuses

on adult patients, although the literatureindicates that FPR is common in the pe-diatric arena. Because almost all of thedata regarding FPR come from the emer-gency department, further ICU-specificresearch is needed (300).

Families today are exercising theirright to be present during resuscitationthe same way they once did to have fa-thers present in the delivery room (302).Seventy-five percent or more of familiessurveyed wanted the option of being

present in the resuscitation room. A sim-ilar percentage of patients, asked if theywanted their family present, answered yes(315). Of families who experienced FPR,75% felt that the experience was posi-tive and helped in their grieving processand said they would repeat the experience(306, 310, 313, 316318); 60% felt thattheir presence helped their dying relative(306, 310, 319).

A randomized trial of emergency de-partment resuscitations reported by Rob-inson et al. (300) offered FPR in 13 casesand did not offer it in 12 cases. In thegroup receiving the offer, two familiesdeclined. Ten deaths occurred in thisgroup, and eight families participated infollow-up psychological testing 3 and 9months after the deaths. In the controlgroup, three families asked to witness theresuscitation and were allowed to do sodespite the study design. There were 12deaths in the control group, and ten fam-ilies participated in follow-up testing at 3and 9 months. The witnesses in the ex-perimental group scored better in five ofthe eight psychological tests performed(p .73). The authors concluded that thewitnesses experienced no more stressthan the control group and showed atrend to better adjustment to their lossthan the control group. The study wasterminated early because staff was con-vinced FPR was significantly beneficialand should not be withheld.

Several organizations have made for-mal statements in support of FPR, in-

cluding the Emergency Nurses Associa-tion (320) and the American HeartAssociation, whose 2005 guidelines forcardiopulmonary resuscitation advocateFPR (321); the American Association ofCritical-Care Nurses (322); and the Amer-ican Academy of Pediatrics (323).

Survey data indicate that healthcareprofessionals vary in their opinions ofFPR; nurses tend to support it and phy-sicians to oppose it. McClenathan et al.(303) found that approximately 60% ofnurses support FPR, compared with 30%

of physicians. These findings were consis-tent with other surveys. Other pertinentfindings in these surveys were that expe-rienced physicians and nurses were morelikely to support FPR than inexperiencedstaff. Staff, especially physicians, weremore likely to support FPR if familieswere not present during invasive proce-dures (303, 304309, 311319, 323, 324).Bassler et al. (302) used a pre- and post-test design to show that nurses accep-tance of FPR could be increased with an



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educational intervention. In a survey ofemergency department pediatric practi-tioners, residents were less likely to sup-port FPR than nurses or attending staff(323). In a study of hospital nurses andEmergency Nurses Association members,nurses with higher education and spe-cialty certification were more likely topromote FPR (325).

A number of objections to FPR have

been raised. One is that family presencesubjects the resuscitation team and sub-jects staff to extra stress that may ad-versely affect performance (305306, 312,316, 326, 327). Staff stress does occurduring resuscitation efforts; Boyd andWhite (301) showed that 22% of staffstudy participants (25 of 114 question-naires) showed symptoms that could beclassified as an acute stress reaction.Nonetheless, staff felt that FPR was a pos-itive experience, that the presence of fam-ily members increased professionalism,that more attention was given to the pa-tients dignity and need for pain manage-ment, and that the presence of familyreduced the black humor common in re-suscitation situations (306). The litera-ture, including Foote Hospitals report of9 years of experience with FPR (317),does not report any interference with re-suscitation by family members (306), nordoes it indicate that resuscitation proce-dures are prolonged by family presence.

Some opponents of FPR fear that FPRincreases stress on families during an al-ready difficult time. Families, however,

are not concerned about stress levels(300, 306, 310, 313, 317, 319, 328).

Families involved in FPR report thattheir fears of resuscitation were muchworse than the procedure they actuallywitnessed (300). Still, opponents of FPRworry about an increase in lawsuits iffamilies misunderstand resuscitationprocedures or interpret them as abuse. Asurvey of the American Association forthe Surgery of Trauma showed that formany trauma surgeons, fear of lawsuits isreason enough to exclude family mem-

bers (305). Experts in medical malprac-tice feel that FPR, by strengthening thebond between staff and family, actuallydecreases the likelihood of legal action(329). To date there have been no medicalmalpractice suits involving families whoeither were allowed to witness resuscita-tion or were excluded from presence atresuscitation.

Any institutional FPR program willhave to address physician objections to besuccessful. A well-designed, carefully

structured protocol is advocated. The pa-tients confidentiality must be ensured,and the patients wishes, if known, shouldbe followed regarding FPR. The protocolshould designate a specially trained staffmember to offer the family the option ofentering the resuscitation room with per-mission of the staff. This liaison shouldexplain beforehand what the family maysee, stay with the family in the resuscita-

tion room, escort the family out of theroom when requested by the family orwhen an invasive procedure is needed,and support the family after the resusci-tation is over, whatever the outcome(319). A study of 984 ICU and emergencydepartment nurses reported that few hos-pitals have policies in place for FPR, butmost hospitals have allowed families to bepresent and have had families request tobe present (330).

Recommendation 1: Institutions de-velop a structured process to allow the

presence of family members duringcardiopulmonary resuscitation oftheir loved one that includes a staffdebriefing. Grade of Recommenda-tion: CRecommendation 2: The resuscitationteam includes a member designatedand trained to support the family dur-ing family witnessed resuscitation.Grade of Recommendation: DRecommendation 3: Resuscitationteam and ICU training includes infor-mation regarding the process and ra-

tionale for FPR. Grade of Recommen-dation: D

Palliative Care

Articles selected for review coveredpalliative care delivery in the hospital set-ting, palliative care education, and familyperceptions of critical care delivery. Arti-cles on palliative care for cancer and hos-pice patients were not included. Articlesreviewed consisted mostly of case reports,surveys, and expert opinion. As family

support represents only one aspect of pal-liative care, there were no controlled tri-als of interventions related specifically tofamily support.

The Clinical Practice Guidelines forQuality Care, released in 2004 by theNational Consensus Project for QualityPalliative Care, were also reviewed, andthe projects recommendations are en-dorsed in their entirety. Although the Na-tional Consensus Project guidelines focusprimarily on the patient, they are also

applicable to family support. Several ofthe projects recommendations are ab-stracted with permission.

Palliative care is medical care focusedon the relief of suffering and support forthe best possible quality of life for pa-tients and families facing life-threateningillness. Palliative care is delivered by amultiprofessional team including physi-cians, nurses, social workers, chaplains,

nursing assistants, and other health pro-fessionals (331). Palliative care servicescan be led either by the primary medicalteam or by a dedicated palliative careservice. Key aspects of palliative care in-clude symptom control, psychosocial andspiritual care, a personalized manage-ment plan that maximizes patient-determined quality of life, and family-oriented care that extends throughoutthe hospitalization through discharge orbereavement

Families often perceive that theirloved ones suffer during the managementof critical illness (332337). Conse-quently, the delivery of palliative care topatients in the ICU is an important com-ponent of family support. Under todaysparadigm, palliative care coexists with ag-gressive critical care and should beginwith the diagnosis of serious illness(330).

Families experience a wide range ofunmet needs that are standard compo-nents of palliative care (336). Several sur-veys highlight family perceptions of inad-equate relief of loved ones pain and

suffering and communication problemswith the healthcare team. According to asurvey of bereaved family members, 52%of families felt that the patient did notreceive emotional support, 20% felt thatthe patient was not treated with respect,38% felt a lack of emotional support forthe family, and 50% received insufficientinformation about what to expect whilethe patient was dying (337).

There is a striking lack of content onend-of-life and palliative care in medicalspecialty texts. A review of 50 textbooks

in internal medicine, neurology, oncol-ogy, infectious diseases/AIDS, and sur-gery revealed end-of-life content to beabsent in 5072% of the texts (338). Asurvey of 3,227 oncologists revealed thatonly 10% had received palliative carecourses in medical school and only 33%during residency or fellowship. Ninetypercent responded that they learned bytrial and error to provide care to termi-nally ill patients (339). Given the paucityof ICU specific data on this topic, the



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following recommendations are made asconsensus statements by these authors.

Recommendation 1: Assessments aremade of the familys understanding ofthe illness and its consequences,symptoms, side effects, functional im-pairment, and treatments and of thefamilys ability to cope with the illnessand its consequences. Family educa-tion should be based on the assess-

ment findings. Grade of Recommen-dation: DRecommendation 2: The family is ed-ucated about the signs and symptomsof approaching death in a develop-mentally and culturally appropriatemanner. Grade of Recommendation: DRecommendation 3: As appropriate,the family is informed about and of-fered referral to hospice palliative careand other community-based health-care resources. Grade of Recommen-dation: D

Recommendation 4: Bereavement ser-vices and follow-up care are madeavailable to the family after the deathof a patient. Grade of Recommenda-tion: DRecommendation 5: Training in theelements of palliative care is a formalcomponent of critical care education.Grade of Recommendation: C

CONCLUSION

Throughout history, families have

played a crucial role in the care of injuredor critically ill members. The technologyand training required to care for criticallyill patients have had the unfortunate con-sequence of limiting family participationin healthcare decision making and thecare of their loved ones. The psychosocialneeds of critically ill patients who oftencannot communicate effectively are oftenoverlooked. This in turn compromisesthe delivery of patient-centered care inthe ICU.

To correct this problem we must ac-

knowledge the important role that familymembers and other healthcare surro-gates play in patient care and embracetheir participation. As advocated in theInstitute of Medicine patient-centeredcare model, this guideline includes rec-ommendations related to informing fam-ilies, maintaining active involvement indecision making, coordinating careacross disciplines, providing the physicalcomfort and emotional support of fami-lies, and providing culturally sensitive

care in accordance with the patientsgoals (1). These guidelines are an initialattempt to make practical recommenda-tions to healthcare providers based oncurrent literature.

Historically, unilateral decision-mak-ing models, based on either patient au-tonomy or physician paternalism, havebeen preferred in the ICU. Care that istruly patient-centered requires a new par-

adigm: shared decision making. Sincefamily members and other health caresurrogates often serve as the spokes-people for their loved ones in the ICU,they must be included in decision mak-ing. Frequent communication throughperiodic multiprofessional care confer-ences is indicated. Communication needsto be culturally sensitive, using termsthat the family can understand. Shareddecision making may decrease familystress and help families to cope. Im-proved communication may also increase

the utilization of advanced directives.Better trained ICU staff, open visitationpolicies, and accurate and timely multiple-professional communication among ICUhealthcare providers can decrease stressand anxiety for both staff and families.

Family involvement and support arefacilitated by an ICU environment thatincludes waiting rooms that are close topatient rooms and that include family-friendly amenities, such as a means tocommunicate readily with both health-care providers and the outside world.

Allowing families to be present duringcardiopulmonary resuscitation may helpfamilies to cope with the death of a lovedone in the ICU. Prayer and adherence tocultural traditions also help many pa-tients and families to cope with illness,death, and dying and should be encour-aged and respected in the ICU. In addi-tion to formal spiritual counseling by achaplaincy service, educated members ofthe ICU staff may help to accommodatethe spiritual traditions and cultural needsof patients and families. Symptom man-

agement and family involvement in pal-liative care processes are also advocatedto improve care in the ICU.

Including and embracing the family asan integral part of the multiple-professionalICU team are essential for the timely res-toration of health or optimization of thedying process for critically ill patients.Support for the psychological and spiri-tual health of the family is an essentialcomponent of patient-centered care forthe critically ill.

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