Parents in the. Ellen Tsai, MD, MHSc, FRCPC Department of Pediatrics and Office of Bioethics Queen s University

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1 Parents in the resuscitation room Ellen Tsai, MD, MHSc, FRCPC Department of Pediatrics and Office of Bioethics Queen s University Pediatric Talk Trauma LHSC September 16, 2010

2 Scenario 1 A 6-year-old male is brought into the ER after being struck by a car while he was riding his bicycle He is alert and appears to have a splenic laceration and humerus fracture The parents arrive in the ER while the trauma team is doing their assessment Do you let them in the room?

3 Scenario 2 A 6-year-old male is brought into the ER after being struck by a car while he was riding his bicycle He is unconscious, intubated and has a hemothorax requiring urgent chest tube The parents arrive in the ER while the trauma team is doing their assessment Do you let them in the room?

4 I would be with letting the parents in the room 1. More comfortable in scenario 1 than 2 2. More comfortable in scenario 2 than 1 3. Equally comfortable in scenarios 1 and 2 4. Equally reluctant in scenarios 1 and 2

5 Objectives At the end of this talk, participants will be able to: Consider the pros and cons of having parents present during trauma resuscitation List resources that may be needed to support this practice successfully

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7 Established in 1812 as The New England Journal of Medicine and Surgery VOLUME 346 March 28, 2002 NUMBER 13 Should Family Members Be Present during Cardiopulmonary Resuscitation? E. Tsai

8 Foote Hospital Large community hospital, Jackson, Michigan Family members asked to be see dying relative undergoing resuscitation, some refused to leave 72% said Yes to survey Do you wish that you had been present during the resuscitation? Began planned participation program in 1982 Afterwards 94% thought they would do it again and 64% thought their presence was beneficial to the dying patient [Doyle Ann Emerg Med 1987; Hanson J Emerg Nurs 1992]

9 Foote Hospital Families of patients undergoing CPR met in waiting room by chaplain or ER nurse Told briefly about pre-hospital and ER events Asked whether they would like to go in Informed about equipment, team, etc. and told about being able to talk and touch patient, but not interfere with resuscitation [Doyle Ann Emerg Med 1987; Hanson J Emerg Nurs 1992]

10 Foote Hospital Briefed by physician team leader upon entry into room Families could either remain with resuscitation or return to waiting room Decision to stop CPR made with or without families present, and family encouraged to spend as much time with patient as needed afterwards [Doyle Ann Emerg Med 1987; Hanson J Emerg Nurs 1992]

11 Benefits to family members Effects on bereavement Desire to help loved ones, perhaps easing death Opportunity to say final goodbye [Doyle 1987; Hanson 1992; Meyers 2000; Adams 1994; Robinson 1998]

12 Benefits to health care team Positive experience despite high stress situation Opportunity to help families even when outcome is not positive Reduction of malpractice risk [Boyd 2000; Back 1994; Robinson 1998; Brown 1989; Beckman 1994; Kraman 1999]

13 2005 AHA Guidelines for Parents and care providers of chronically ill children are often knowledgeable CPR about and comfortable ECC with medical equipment and emergency procedures. Family members with no medical background report that being at the side of a loved one and saying goodbye during the final moments of life is comforting and helps in their adjustment, and most would participate again. Standardized psychological examinations suggest that, compared with those not present, family members who were present during attempted resuscitation have less anxiety and depression and more constructive grieving behavior. Most family members would like to be present during resuscitation. Parents and care providers of chronically ill children are often knowledgeable about and comfortable with medical equipment and emergency procedures. Family members with no medical background report that being at the side of a loved one and saying goodbye during the final moments of life is comforting and helps in their adjustment, and most would participate again. Standardized psychological examinations suggest that, compared with those not present, family members who were present during attempted resuscitation have less anxiety and depression and more constructive grieving behavior. Parents or family members often fail to ask, but health care providers should offer the opportunity whenever possible. If the presence of family members proves detrimental to the resuscitation, they should be gently asked to leave. Members of the resuscitation team must be sensitive to the presence of family members, and one person should be assigned to comfort, answer questions, and discuss the needs of the family.

14 Is trauma different from CPR? Most are previously healthy children Most survive their injuries More invasive interventions (pediatrics less so than adults) More team members in the room Parents may also be injured

15 One group whose members have actively opposed family presence is the American Association for the Surgery of Trauma. - Jerome Groopman, The New Yorker, 2006

16 Survey of AAST and ENA Survey mailed to all AAST members (n=813) and random 10% of ENA members (n=2988) 43.4% response rate (46.3% and 42.6%) Majority had previous experience with FP (55.3% and 67.8%) 74% of surgeons reported experience as negative; 63.6% of nurses believed patient/family benefited 32.8% surgeons (vs. 5% nurses) believed FP in the resuscitation suite was never appropriate, more likely to believe FP would interfere with patient care and increase staff stress [Helmer J Trauma 2000]

17 2.6 to 18.7% of surgeons 23.3 to 80.7% of nurses Table 1. Response by AAST and ENA members to the survey question, "What procedures should the family member be allowed to witness? 2000 Lippincott Williams & Wilkins, Inc. Published by Lippincott Williams & Wilkins, Inc.

18 Survey of German Trauma Society (DGU) Survey mailed to 545 surgeons in level 1 trauma centres of Trauma Network of DGU Response rate 85% 36.2% had previous experience with FP (56% reported positive experiences, 19% negative) 6.7% work in centres with positive FP-concept 50% would never allow FP in TR, 42% would allow it after completion of invasive procedures Females better informed about FP, would promote it more supportively and more reported previous positive experiences [Kirchhoff Resuscitation 2007]

19 We welcome the call for scientific validation of the family presence concept. Unfortunately, the present body of literature falls far short of this goal.until such data are available, many will continue to consider the family presence concept as pseudoscience or a well-intentioned, but misguided, mistake. - Stephen Smith, J Trauma, 2000

20 The criticisms Mostly retrospective surveys of family members and staff, only a few RCTs and prospective studies Extrapolation of study results to FP with other procedures Limited data on impact to medical care Need further research into benefits and harms of the practice

21 What s the evidence? Since 2000, numerous articles about FP including AHA guidelines PubMed search for family presence 170 articles 48 articles (All child 0-18 years) 25 articles (AND Trauma) 12 articles (All child 0-18 years AND Trauma)

22 CHOP Trauma Team Study Cross-sectional study of new structured FP program over 18 months combining prospective data and surveys with chart review 197 family members participated in FP No cases of interference with medical care (7 FMs asked to leave, 2 for intubations) No difference in time to key interventions (logroll, x-ray, IV, CVL, intubation, chest tube) Majority (>90%) of 136 staff surveys reported no effect or improved decision-making, patient care and communication [O Connell Pediatrics 2007]

23 Utah Trauma Team Study Prospective trial offering FP on even days and no FP on odd days to evaluate effect on efficiency of TR 705 patients (283 FP and 422 non-fp) Median times to CT scan (21 min) and median resuscitation times (15 min) similar Families believed FP was helpful to child and themselves, was not upsetting and would do it again [Dudley Ann Emerg Med 2009]

24 CNMC PED Study Evidence-based practice project to evaluate FP intervention in a pediatric ED using 6 A s of the evidence cycle 96/106 families deemed appropriate (72% trauma, 28% medical resuscitation) All families wished to be present Patient care not interrupted in any cases FP terminated in 1 case by mother who asked if she could leave the room [Kingsnorth J Emerg Nurs 2010]

25 What family presence is not

26 Any institutional FP programme will have to address physician objectives to be successful, by recommending a well- designed, carefully structured protocol with a designated specially trained staff member to offer the family support and the option of entering the resuscitation room with permission of the staff. - Kirchhoff, Resuscitation, 2007

27 Policy considerations Benefits of FP for the patient and family Criteria for assessing family to ensure uninterrupted patient care Role of the family facilitator Support for decisions to not have family members present Contraindications to family presence [AACN Family presence during resuscitation and invasive procedures 2010]

28 Additional considerations Foote Hospital allowed family members in during controlled situations 63.9% of AAST and 68.0% of ENA members believed that family should be allowed in after completion of invasive procedures [Helmer 2000] Need buy-in of all members of team, including TT surgeons, nurses and others Literature shows that education and positive experiences increase acceptance

29 Questions? Comments?

30 Where would you want to be?

31 Conclusions FP already more prevalent in pediatric than adult settings increasing parental expectation Can complement other family-centered care initiatives and enhance staff-family relationships Structured, planned approach with sufficient resources essential to success of FP program Start with the right patient (and family) at the right time