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Lasting Benefit ... or Haunting Memory?


 

Your longtime patient is admitted with a myocardial infarction. While you are talking with him, his wife, and his two adult children during your morning rounds, he suddenly gasps and becomes unresponsive. The monitor sounds, showing ventricular fibrillation. The nurse rushes in and hits the code blue alert button, and people begin filling the room.

While you are with a patient, the code blue alert goes off in the next room for a patient unknown to you. As the first physician on the scene, you begin directing resuscitation attempts. You notice the patient’s wife and her friend standing in the corner of the room, watching with horrified expressions.

The 15-year-old asthmatic patient you admitted to the ICU last night has rapidly increasing respiratory distress and requires intubation. His mother has been sitting at his bedside all night.

No one disagrees that the patient’s needs come first in these situations. There is little or no time to establish rapport, to explain what is going on, and why. Usually, family and friends are quickly ushered out of the room by nursing or spiritual-care personnel. They are escorted away from their loved one’s room while an army of people in scrubs and white coats races past them. They sit in the waiting room, trying to imagine what’s going on and fearing the worst. Often, the moment of arrest is the last image they have of their loved one until they view the body, peacefully arranged with clean white sheets but often with the disconnect of strange new tubes in place, distorting the familiar face.

With invasive procedures, family members also fear that something will go wrong, or that their loved one will suffer pain or discomfort during the procedure. While recovering, loved ones may be heavily sedated, grotesquely draped with tubes, and surrounded by frightening machines.

Why are family members banned from the patient’s bedside in these situations? Let’s examine the rationale and evidence for this practice.

Three Perspectives

There appear to be three perspectives on this issue: those of the providers, the family members, and the patient. Each looks at the situation differently. Research on these perspectives is conducted in one of two ways; researchers either express opinions and concerns in a hypothetical fashion without using experience, or a survey is conducted using actual outcomes. These surveys suffer from the weakness of self-selection, because those with negative feelings may not respond.

Providers

The provider’s common concerns include:

  • Emotional trauma to the family member witnessing the process—or to the patient, who may fear that the experience will traumatize his or her loved one;
  • Family members interfering with the process, demanding that CPR be stopped or continued inappropriately, or physically getting in the way of an already crowded room;
  • Risk of litigation;
  • Interference with resident training;
  • Provider discomfort, causing suboptimal performance; and
  • Patient confidentiality.1

Providers are also concerned about saying something that may be interpreted as inappropriate by the family. For example, staff members sometimes use humor to relieve the stress of a situation—humor that may be misconstrued or misinterpreted by family members. Cardiopulmonary resuscitation is not portrayed in a realistic fashion on many TV medical dramas, such as “ER” or “House,” and family members and patients may have unrealistic expectations or may believe that a poor outcome resulted from provider error.2

Hypothetical category studies used survey data gathered from emergency department (ED) and critical care physicians and nurses, allied health professionals, social workers, and spiritual care personnel. These studies are descriptive and quite heterogeneous, using different survey tools, sample sizes, and populations. In general, nurses were more often supportive of family presence than physicians, and attending physicians were more supportive than residents.1 Providers with no personal experience of family presence tended to oppose it.

Studies of the attitudes of providers familiar with family presence are also mostly retrospective, descriptive surveys.3 A few looked at provider opinions before and after experiencing family presence. Family presence was more often supported in these surveys, although McClenathan’s survey found that the majority of respondents did not favor it.4 Provider concerns, it turns out, were unrealized in actual family presence experiences. Some respondents, however, described the family’s presence as a source of stress.5,6

Interestingly, a survey of the American Association for the Surgery of Trauma (AAST) and the Emergency Nurses Association (ENA) found that 18% of AAST members felt family presence was beneficial, compared with 64% of ENA members. More AAST than ENA members felt that family presence was inappropriate during all phases of a code blue. The issue of who should decide whether or not a family should be present was also variable, with nurses leaning toward the family or the code team, while physicians were more likely to indicate the senior medical officer.7

Those in favor of family presence cite several benefits: the ability to educate the family about the patient’s condition in real time, the essential patient information families can provide, the assistance a family can offer in positioning and supporting the patient, and the fact that their presence can help providers to recognize the patient as part of a loving family unit. The patient’s rights to dignity, privacy, and pain control are less likely to be overlooked, even in urgent situations, with family members present.1 Attention to these important patient and family issues also serves to reduce the risk of litigation.

Families

In surveys and polls, the majority of the American public consistently reports the desire to be with a loved one during emergency procedures or at the time of death. Seventy percent of surveyed emergency and critical care nurses and physicians in Australia want to be present for a loved one. Many family members feel they have a right to be present. Moreover, outcomes data indicate that more than 90% of those who have had this experience say they would do it again.3,8 One randomized prospective study was terminated early; once the staff saw the benefits of family presence, they felt that continuing the study would be unethical.9

Positive family member comments included the following:

  • “I couldn’t imagine not being a part of it”;
  • “I saw that everything was done for him”;
  • “I felt he knew that I was there”; and
  • “Seeing and touching helped relieve the stress I felt weeks later.”5

Negative comments included:

  • “ … Very unpleasant, haunting, and constant memory”;
  • “ … Staff seemed too coldly professional”; and
  • “I can still see him with all those needles.”

Several participants felt their loved ones were already dead and that the resuscitation was unnecessary, perhaps attempted only to run up the bill. Some wished they had been given their loved ones’ clothes that they saw tossed in the trash. Lack of preparation for what they were about to witness was also a complaint. Finally, families complained that hustling them out of the room or denying them entrance was insensitive.

Providers’ concerns about adverse psychological impact have not been realized in the literature, although one small study found that three of five families of CPR survivors may experience psychological stress up to 12 months later.9,10 Wagner’s study outlined six families’ struggles to decide when or whether to stay with their loved ones.11

Patients

In all this data, the patient’s voice is noticeably absent. Hypothetical category studies sometimes asked participants not only about their loved ones but also about how they felt if they themselves were the patients.12,13 While the majority of patients were not opposed to allowing the presence of a spouse or relative who wished to stay, they were less insistent than were family members. Age and race were associated with preferences: older (mean: 50 years) white patients preferred not to have family present. Therefore, an open family presence policy that doesn’t take into account the patient’s wishes may not be appropriate.

Of the available outcome data, Eichhorn’s 2001 report of nine adult and teenage patients, one of whom underwent CPR, found that all were comfortable with and reassured by having their families at their bedsides.14 Clearly, this is an area in need of further research.

Hospital Experience

Beginning in 1982, Foote Hospital in Jackson, Mich., was a pioneer of witnessed resuscitation in the ED.5 A follow-up article after nine years’ experience describes its success.15 Hospital policies for chaplain and ED staff outline a case-by-case assessment. If the option is believed to be appropriate and is approved by the treating ED physician, the chaplain or nurse prepares the family, escorts selected family members into the room, and remains with them for support and information. The family members may take a place at the patient’s bedside to touch and speak with their loved one.

Having family at the bedside “helps people having trouble with closure and those who have a good grasp on it, but not everybody,” says Debra Jamieson, RN, critical care supervisor at Foote Hospital. “You don’t have to go into a lot of depth; they can see everything you’re doing.”

Regarding provider stress, “you work through your own feelings about death and dying,” she says.

Mayo Clinic Rochester has a similar policy in its ED. “At St. Mary’s Hospital in Rochester, Minn., the emergency department has had a policy for allowing family members to be present during medical resuscitations. This is true for both adult and pediatric resuscitations,” says David Klocke, MD, assistant professor of emergency medicine and medicine. “I have never seen a family member lose control or interfere with the resuscitation, though on occasion I suspect this could occur.”

The critical care units are also moving toward developing a policy, according to Critical Care Committee Chairman Rolf Hubmayr, MD.

Professional Society Support

The ENA was probably the first society to introduce guidelines (in 1995) for family presence during resuscitation. The American Heart Association, Emergency Medical Services for Children, the American Academy of Pediatrics, the American College of Emergency Physicians, and the American Association of Critical Care Nurses all recommend family presence.1 Having a trained facilitator available for family support, offering multiprofessional support, providing staff education, and creating written policies are all recommended. At last check, however, only 5% of nurses work at facilities with written policies.

Conclusions

Bringing a family to the bedside should not happen haphazardly but should be handled with careful consideration and support for all involved. Institutional policy and protocol can provide legal support and define expectations. Providers should be educated, perhaps during advanced cardiac life support (ACLS), advanced trauma life support (ATLS), fundamental critical care support (FCCS), and pediatric advanced life support (PALS) courses. The patient’s wishes should be honored whenever possible. Family presence could even be added to the advance directive discussion. Certainly, more study in this area is needed. Given current data, however, it is reasonable to consider bringing families to the bedside in emergency situations. TH

The author gratefully acknowledges Debra Jamieson, RN, and Ned McGrady of Foote Hospital Pastoral Care for the extensive materials they supplied to assist with this article.

References

  1. Guzzetta C. Family presence during CPR and invasive procedures. Presented at: 35th Critical Care Congress, Society of Critical Care Medicine; January 9, 2006; San Francisco, California.
  2. Diem SJ, Lantos JD, Tulsky JA. Cardiopulmonary resuscitation on television. Miracles and misinformation. N Engl J Med. 1996 Jun 13;334(24):1578-1582.
  3. Halm MA. Family presence during resuscitation: a critical review of the literature. Am J Crit Care. 2005 Nov;14(6):494-511.
  4. McClenathan BM, Torrington KG, Uyehara CFT. Family member presence during cardiopulmonary resuscitation: a survey of US and international critical care professionals. Chest. 2002;122:2204-2211.
  5. Doyle CJ, Post H, Burney RE, et al. Family participation during resuscitation: an option. Ann Emerg Med. 1987 Jun;16(6):673-675.
  6. Hallgrimsdottir EM. Accident and emergency nurses’ perceptions and experiences of caring for families. J Clin Nurs. 2000 Jul;9(4):611-619.
  7. Helmer SD, Smith RS, Dort JM, et al. Family presence during trauma resuscitation: a survey of AAST and ENA members. American Association for the Surgery of Trauma. Emergency Nurses Association. J Trauma. 2000 Jun;48(6):1015-1024. Comment in: J Trauma. 2000 Dec; 49(6):1157-1159 and J Trauma. 2001 Feb;50(2):386.
  8. American Association of Critical-Care Nurses. Practice Alert. Family presence during CPR and invasive procedures. Available at: www.aacn.org/AACN/practiceAlert.nsf/Files/FP/$file/Family%20Presence%20During%20CPR%2011-2004.pdf. Last accessed March 29, 2007.
  9. Robinson SM, Mackenzie-Ross S, Campbell Hewson GL, et al. Psychological effect of witnessed resuscitation on bereaved relatives. Lancet. 1998;352:614-617.
  10. Meyers TA, Eichhorn DJ, Guzzetta CE, et al. Family presence during invasive procedures and resuscitation. Am J Nurs. 2000 Feb;100(2):32-42; quiz 43. Comment in: Am J Nurs. 2000 May;100(5):12, 14. Am J Nurs. May;101(5):11,45-55.
  11. Wagner JM. Lived experience of critically ill patients’ family members during cardiopulmonary resuscitation. Am J Crit Care. 2004 Sep;13(5):416-420. Comment in: Am J Crit Care. 2005 Jan;14(1):14.
  12. Benjamin M, Holger J, Carr M. Personal preferences regarding family member presence during resuscitation. Acad Emerg Med. 2004 Jul;11(7):750-753.
  13. Mazer MA, Cox LA, Capon JA. The public’s attitude and perception concerning witnessed cardiopulmonary resuscitation. Crit Care Med. 2006 Dec;34(12):2925-2928. Comment in: Crit Care Med. 2006 Dec; 34(12):3041-3042.
  14. Eichhorn DJ, Meyers TA, Guzzetta CE, et al. During invasive procedures and resuscitation: hearing the voice of the patient. Am J Nurs. 2001 May;101(5):48-55.
  15. Hanson C, Strawser D. Family presence during cardiopulmonary resuscitation: Foote Hospital emergency department’s nine-year perspective. J Emerg Nurs. 1992;18:104-106.

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