The unresponsive elderly woman lay on a stretcher as a team of physicians, nurses, and others worked busily trying to save her. Amidst the organized chaos, I soon realized I was not the only observer in the room. The woman’s husband and son had been invited in by the charge nurse. I wondered whether they should witness such intense and disturbing medical procedures, some even unsettling for me. I mean, shouldn’t we try to spare families from witnessing such dramatic events? And couldn’t they jump in at any moment and disrupt the care team?
What healthcare providers call “resuscitation” is usually the care provided to someone dying; it’s a last-ditch effort which is often unsuccessful. There is now good evidence that witnessing the care provided to a dying relative can ease grief and facilitate positive long-term psychological outcomes. Observing this process may ultimately help families come to terms with the finality and reality of death.
Traditionally, families were escorted away from their loved ones during resuscitation. This exclusion of family members was first questioned in 1982 by emergency room staff at the Foote Hospital in Michigan. An evaluation of chaplain services revealed that 73 percent of family members whose loved ones had died following unsuccessful resuscitation had wanted to be present during the final hours of resuscitative care. A program was then introduced that permitted select family members to be present in the treatment room. This was the first formally documented program of family-witnessed resuscitation (FWR) during critical medical care.
In the three decades since, FWR has been the subject of several more studies. They have shown benefits to those offered the option to be present during a loved one’s resuscitation.
Generally, a family left in the waiting room is more likely to misunderstand the care provided and FWR is linked to decreased medico-legal risk. Similarly, allowing families to be present helps them understand the severity of the patient’s condition and appreciate the extent of care provided. Several families have stated feeling reassured that their loved ones did not die alone.
This has led to more official endorsements from professional societies in both Canada and the United States. In 2000, the internationally respected American Heart Association (AHA) included FWR in its official recommendations for Advanced Cardiac Life Support.
The little we know from the patient’s perspective boils down to three anecdotal cases from people who survived resuscitation efforts. All three indicated feeling supported by having family present and did not feel their dignity or confidentiality were compromised.
Though data show the benefits of FWR, many health care practitioners have been slow to adopt the practice of inviting families to witness resuscitation efforts.
In a 2014 review, medical providers said their reluctance stemmed from a fear of potential litigation, heightened stress and anxiety, psychological trauma to the family, and concerns regarding the quality of care or potential for protective family to disrupt care.
While the evidence is now fairly strong for FWR, logistical obstacles remain, including determining who and how many family members should be present and how to accommodate them in addition to a large healthcare team and unwieldy medical equipment.
Though many initially feared having relatives present would result in unnecessary suffering to family or increased litigation when a loved one dies, it’s encouraging that data have revealed quite the opposite.
It’s also important to understand how to support family members through the experience of seeing emergency resuscitative care.
Some possible next steps to wider implementation of FWR may include:
- Thoughtfully designed spaces to accommodate family during resuscitative care.
- Formal guidelines on what constitutes “family” and how many people can be present without interfering with the care team.
- Early planning for the role of a designated “chaperone” to support family members during tough moments and provide a way out should it be necessary.
- Improved awareness from care professionals to consider the possibility of having lay witnesses present during resuscitative care.
Family witnessed resuscitation represents a critical opportunity to build trust, transparency, and inclusiveness. The question has shifted from whether we should allow family members during resuscitative care to how do we best ensure FWR is practiced in a way that is beneficial for patients, their loved ones and medical providers.
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Having worked in obstetrics and having to resuscitate neonates at the time of delivery there was never an option whether the parents were present or not. With that said there was never a question of “what happened?” When the resuscitation was not successful the feedback was typically “we know you did everything you could.”
Just a comment that this adds more stress to the focused health care resuscitation team
I do agree in total awareness and visibility. Many procedures such as tracheotomies, opening chest wounds to manually compress and your clamp bleeders, other wounds etc are very traumatic for the family
It is extremely difficult to do these procedures in the rather emergent situations with any decorum or discussion to the family.
This is a great debate question. As an RN who practiced predominantly in oncology, resuscitation events were relatively uncommon, though more common than one would think. When careful and thoughtful Advanced Care Planning took place, where patients and families were able to make an informed decision and educated on the mechanics of resuscitation, FWR was encouraged by the team (well at least most members) and welcomed by the family. In my own practice, when I knew that ACP had not happened, I would do my best to walk families through the controlled chaos (as described by one patient) and they too found that comforting. Fast forward to my own personal experience—my dad fell off the roof of the house, had a catastrophic injuries, lost a lot of blood but managed to hold on long enough to get to the hospital where they miraculously stabilized him long enough for me to make it up north–I was three hours away when I got the call. All I could do while we were driving up is try to arrange care while they were stabilizing him and try to be daughter and nurse at the same time–doing the best for my dad and walking my mom through what was happening drawing on informal advanced care planning discussions we had as a family over the years. As we were finalizing transportation to neurotrauma services, dad suffered cardiac arrest. The team called my mom and me into the room, and the doctor explained what was happening and quickly asked whether we wanted resuscitation. I could see my mom’s confusion and I went straight into “nurse” mode explaining exactly what happens (while they started in the background), not mincing words—all the information in as a straight forward manner as I could muster, for her to make a decision. For her it was easy–she didn’t want to watch that but more importantly she knew my dad’s wishes (as did I) and was able to make a decision. So moral of my story—good ACP early in life (not just when disease sets in) certainly helps whether resuscitation is the plan or not. If it is, asking families, supporting them, telling them exactly what happens–everything mentioned in this article–is the way to go.
Thanks for your post Lisa and sharing your story. You make a very good point that discussing end-of-life before catastrophic injuries or illness sets in makes for much better experience. After all, it is inevitably part of everybody’s life.