Educational Objectives - After evaluating this article, participants will be able to:
1. Incorporate strategies into practice which will include family witnessed resuscitation
2. Consider the implications of disallowing families access to the family members undergoing procedures or during resuscitations
3. Develop a family-witnessed resuscitation (FWR) program
Part I: A look at the data
by Patrick Barrett, MD
As I wrap up my emergency medicine residency and enter the “real world” after so many years of training, I look back and see how my clinical practices have changed considerably. I no longer place a certain order just because that is “what you do,” but because the result is significant in my medical decision-making. I no longer pause and take a deep breath before I call a surgical consult for fear of not knowing what to say. I also no longer ask family members to step out of the room during a procedure solely because I am afraid I will make a mistake. In fact, in my practice now, I do allow family members to be present during procedures, for the most part. But this is one area where many practitioners differ, regardless of their level of training. The practices range from a no-family-member policy to an “all welcome all the time” policy. In our world of evidence-based medicine, where a policy exists for just about every topic or practice, I had to wonder at this broad variation in practice. What does the research say? Are there plans to study this more thoroughly in the future? I set out to find some answers.
In the early 1990s at Foote Hospital in Jackson, MI, a police officer’s wife asked to be at her husband’s bedside while he was undergoing CPR for cardiac arrest. After this event, the hospital developed a novel program and policy allowing family presence1. Since then, a debate on the topic has ensued. Proponents of family presence feel that relatives can provide history for nonverbal patients. Presence helps families cope with bad outcomes and have a better grieving process. There is also an ever-present push for a more active role in patients and family members in patient care. These all sound like good reasons to me. Opponents of the issue fear increased litigation, increased working stress in an already stressful environment, and traumatic psychological distress of families. Furthermore, there is the fear that family members may interfere with treatment of patients. These are genuine concerns, but is there evidence to back any of these claims on either side?
What do our academic colleges and associations think? ACEP states in its “Issues in EM” that “the presence of family members generally is well received in controlled environments, although the practice is new and its role in emergency medicine remains controversial.” The Emergency Nurses Association was the first to develop specific guidelines in 1994. The ENA supports ”the option of family presence during invasive procedures and cardiopulmonary resuscitation.” The American College of Critical Care Medicine states that “family members of all patients undergoing resuscitation and invasive procedures should be given the option of presence at the bedside.” The American Academy of Pediatrics states that family presence should be offered during CPR. All of these organizations, and many others, seem to support family presence, or at least the idea of it. However, why is it not universal practice and standard of care? What I found was quite interesting and somewhat surprising.
The topic of family presence has been slow to gain acceptance over the years, even though it is becoming more and more expected in theory. For example, both ACEP and AAP recommend the option of family presence for all aspects of patient care, but physicians and other health care workers still hold significant concerns. A survey of trauma surgeons concluded that family presence during all aspects of trauma resuscitation was inappropriate4. Also, there are different attitudes regarding children and adult patients. Furthermore, there are differences in attitudes of family members compared to health care providers. There are even differences of opinions amongst differing types of health care providers.
How do families and patients feel about this topic? Most studies to date have involved surveys. One such study concluded that most patients desire family presence3. For example, 86.5% desired to be present for lumbar puncture. Although they had decreasing desire for presence with increasing level of invasiveness, most family members wished to be present if a loved one were likely to die. Additionally, nearly all family members wanted to be an active participant in medical decision-making. Another study published in Pediatrics in 2008 concluded that family members who were present were more satisfied with the experience9. Many other studies have come to similar conclusions. While this evidence would seem relatively clear, family presence is still not universally accepted. In a world of active participation in medical decision-making and clinical care, why is this not a universal norm? Are we, the health care providers, to blame?
As a whole, health care providers have been hindering family presence over the years. Why is this? Helmer et al., concluded via a survey of American Association for Surgery of Trauma members and Emergency Nurses Association members that only 17.3% of AAST members felt that their family presence experience was beneficial. 63.6% of ENA respondents believed family presence to be beneficial6. This study showed that different groups of health care providers felt differently about this issue. Baumhover et al., in the American Journal of Critical Care in 2009, found that health care professionals are fearful of litigation with patient’s family members present2. There still was no overwhelming support for family presence. Nearly 20 years after the first policy was introduced in Michigan, health care workers have yet to accept this practice.
Now you might be saying, “These are all survey studies, show me some evidence.” That is exactly the direction new studies are taking in order to figure this all out. In 2005, Sacchetti et al., aimed to address the argument that family presence has potential for disruption of care. This small prospective observational study made the observation that family member interference is not a risk during invasive procedures8. Fernandez et al., in Critical Care Medicine in 2009, explored family presence impacts on physician performance during simulated codes5. This randomized comparison study found significance in the time taken to shock and number of shocks delivered with family member interference, but no significant difference in time to initiate CPR, attempt intubation, and pronounce death.
Overall, there was an impact of family witnesses on time to some, but not all, critical actions during medical resuscitation. Sample size was small, so more studies still need to be done. Dudley et al., completed a similar study published in the Annals of Emergency Medicine in 2009 measuring time from ED arrival to certain critical actions such as CT scan or completion of resuscitation. This was in pediatric trauma patients. This prospective trial concluded that there were no significant effects of family presence on the efficiency of pediatric trauma resuscitation4. So studies are showing that having families present may not have a negative effect on quality of care.
There is growing evidence that family presence does not interfere with patient care during invasive procedures or resuscitations. No objective data exists to support the routine exclusion of families. There are current studies underway that aim to shed more light and objective data on this subject. Family presence does not seem to cause harm to patients or patient care. One underlying theme and common concern that repeatedly is discussed in the literature is the need for a dedicated professional to be the family member’s dedicated liaison to provide emotional support, to explain what was happening during a resuscitation, and to prevent interference with care. This person could be a nurse, social worker, or other hospital employee trained to deal with such circumstances. This brings up yet another, critical question. In these hard financial times for hospitals, can another salaried employee be added to the mix? Even if it is an ED nurse already employed and working in the department, he or she would still have to give up other duties to provide the aforementioned roles. This is a real problem in today’s world.
Financial burden aside, I believe that family presence is a reality and a necessary one that does not interfere with care. Some hospitals have protocols in place, but many do not. The next time you come across the situation where you find yourself asking a family member to leave the room, stop and think twice. Are they really going to interfere with care, affect your decision-making capacity, or affect the outcome of the patient? Of course, the disruptive family member who is clearly not amenable to quiet passive involvement should not be present. However, if that is not the case, why are we asking a family member to step out? Consider allowing a family member to be present and not completely excluded.
I realize that all of this is easier said than done. During a chaotic resuscitation, family presence will probably not be the first issue to come to mind. I ask you to think about this beforehand, however. Why do you ask family members to leave? Is this necessary? Could this family member be present without interfering with the care of the patient? At the end of the day, taking care of the patient is priority number one. As more studies are conducted, we will hopefully learn more about the true impact, both positive and negative, of having family presence during patient care.
Part 2: Moving Towards Change
by Kirsten G. Engel, MD
Although it has been more than 25 years since the first literature appeared on family-witnessed resuscitation (FWR), it is not surprising that considerable uncertainty and variability continue to exist in provider attitudes and clinical practice. FWR elicits strong emotional responses from providers because it represents a significant paradigm shift in how we practice emergency medicine, and thus, it should be expected that its adoption will take time. During this period of evolution, it is critical that we embrace the existing controversy by sharing our thoughts and experiences with one another and engaging in constructive debate and discussion.
My interest in FWR developed after the sudden and unexpected death of my mother while a second-year resident. Just two weeks prior to my mother’s death, I performed my first independent death notification in the setting of a multi-vehicle accident which took the lives of several teenagers. It was an intense emotional experience for me and one that I will never forget. As I spoke with the father of one young victim, I had no idea that only a short time later, I would face similar loss and tragedy in my own family. As my mother’s child, I struggled with the devastatingly abrupt and irrevocable way in which my life had changed. As a physician, I struggled with recurrent nightmares that dramatized my fear of conducting death notification and supporting a family facing the loss of a loved one in the emergency department. My emotions were too intense, my empathy too great and it all seemed insurmountable, so I turned to reading. I inundated myself with articles, commentaries, and books on sudden death and death notification with the notion that if I strengthened my knowledge and skills, I would be able to overcome my fears. In my reading, I came across FWR and the potential benefit for family members. Although it may seem difficult to imagine how such an intense experience could be valuable to participants, it becomes more immediately evident when one has felt the deep pain and anguish of sudden life-threatening illness or death in a loved one.
In this brief piece, it is my hope to emphasize some of the emotional and personal elements that lie on each side of the debate over FWR. First, I want to provide insight into the experience of FWR for families and how this opportunity may provide significant emotional benefits for individuals when faced with the serious illness or injury of a loved one. Secondly, I want to appeal to each of us as providers and discuss the factors that challenge us personally in embracing this practice.
During moments of critical illness or injury, family members feel frightened, helpless, and disempowered.(1) They desperately want to be able to help and support their loved one, yet they are unsure how to do this when disease and injury overwhelm the patient in ways that they do not understand and are unable to control. FWR is empowering for family members because it engages them in this process and allows them to witness the significant efforts that are directed at helping their loved one. In the two pioneering studies on this practice, at Foote Hospital in Jackson, Michigan, and at Parkland Hospital in Dallas, Texas, participating relatives reported that their presence was important in providing support and reassurance to the patient, as well as in relieving their own anxiety by reducing feelings of helplessness and the “agony of waiting.” (2,3) Family members also expressed that being present with a dying loved one eased their subsequent bereavement process. Parkland study participants indicated that their experiences helped them to understand the severity of the patient’s condition and to appreciate that their relatives had received the best possible care.(3) In a nine year follow-up study at Foote Hospital, family members never interfered with a resuscitation attempt and rather than being traumatized by watching a resuscitation, consistently made positive comments about the practice.(4) Other studies of FWR have also demonstrated similar positive responses from participating families (5) and one randomized controlled trial was ended early because emergency department staff became so convinced of the value of FWR to family members. (6)
As health care providers, we are committed to providing the best possible care to our patients. When we are faced with a patient with critical illness or injury, it is distressing and upsetting for us. We want to believe that our skills as physicians can “save a life” and we are devastated when our best efforts fail to yield the results we desire. As we consider the practice of FWR, it is clear that emergency providers who oppose family presence during resuscitation have laudable intentions. We see the patient as our primary responsibility and worry that the presence of relatives will undermine our care of that patient. It is also difficult for us to consider allowing family members to witness our most challenging moments – those when we may feel least satisfied and successful as physicians. However, we must challenge ourselves to consider the patient in the context of their family and find satisfaction and pride in our ability to benefit those closest to our patient. Although our resuscitation efforts may ultimately not be successful, we can fulfill our commitment to this patient by engaging and embracing their family.
Evidence suggests that experience and education are critical to changing physician attitudes regarding the benefits of FWR policies. Physicians who experience FWR first-hand often change their mind on this issue. In a letter to The Journal of Trauma, Dr. James Barone explained how allowing the family of a nine-year old girl in to see her while resuscitation activities were in progress changed his opinion of family presence:
“I had previously opposed any intrusion into the sacred domain of the trauma resuscitation room by patients’ families. I now realize that under the proper circumstances…the presence of the family may actually be a good thing for everyone, including the caregivers.”(7)
Another physician made similar comments after a FWR program was implemented at his hospital:
“ I was very much against [FWR] when we started. Now that I have seen the benefits to families and staff, I endorse it strongly.”(5)
As we move forward with our current debate over FWR, I hope that we, as health care providers, can simply keep our minds open to the possible benefits of FWR, continue to engage in candid discussions of this topic, and even give this practice a try when the opportunity presents itself. With this approach, I anticipate that our deep commitment to our patients and their families will ultimately inspire meaningful and widespread change in clinical practice.
1. Parrish GA, Holdren KS, Skiendzielewski JJ, Lumpkin OA. Emergency department experience with sudden death: a survey of survivors. Annals of Emergency Medicine. 1987; 16:(7)792-6.
2. Meyers TA, Eichhorn DJ, Guzzetta CE, et al. Family presence during invasive procedures and resuscitation. American Journal of Nursing. 2000;100:32-42.
3. Doyle CJ, Post H, Burney RE, Maino J, Keefe M, Rhee KJ. Family participation during resuscitation: an option. Annals of Emergency Medicine. 1987;16:673-5.
4. Hanson C, Strawser D. Family presence during cardiopulmonary resuscitation: Foote Hospital emergency department's nine-year perspective. Journal of Emergency Nursing. 1992;18:104-6.
5. Belanger MA, Reed S. A rural community hospital's experience with family-witnessed resuscitation. Journal of Emergency Nursing. 1997;23:238-9.
6. Robinson SM, Mackenzie-Ross S, Campbell Hewson GL, Egleston CV, Prevost AT. Psychological effect of witnessed resuscitation on bereaved relatives.[comment]. Lancet. 1998;352:614-7.
7. Barone JE. Family presence during trauma resuscitation.[comment]. Journal of Trauma-Injury Infection & Critical Care. 2001;50:386.