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Patient Care

Death Communication: What We’ve Failed to Teach

Almost 10 years ago I spotted the words Coping with Death (optional) listed in the Pediatric Advanced Life Support (PALS) instructor manual. “Why don’t we ever teach this section?” I asked the man who gave me my first job as an American Heart Association instructor. He uncomfortably replied, “We don’t have time to teach it.”

I expressed my interest in making the time for it when I taught PALS because “it’s a topic we don’t get enough training on.” By now he was rubbing his neck with his palm while agreeing with my point, going on to admit it was simply a challenging discussion to have and usually “dampened the mood” of the class. It was “too depressing,” he finally said.

While I agreed it would not be easy, that was not enough for me to pretend this content did not exist. So in the next PALS course I taught, I made time for this short video, offering the recommended disclaimer excusing anyone who did not wish to view it, especially if they’d recently lost a loved one.

At the end of the module, the mood was notably more somber, and a great discussion followed. However, after the class ended, a woman walked up to me with tears in her eyes. She told me her adult son had been killed in a traffic collision less than a year ago, and her question was a simple: “Do you think he suffered?” The answer to her question, however, was not simple. I sat with this grieving mother and gave her the space to cry and share her story. While the conversation offered some relief for her, l left that interaction feeling immense guilt for what I had done. I never taught that optional module again.

What the Research Says

The need to expand death education within training institutions was identified over 25 years ago.1 A study published in 1995 surveyed 537 paramedic training programs across the United States, with a 51% response rate. While 95% of programs that participated in the survey offered some form of death education, it was typically limited to assigned reading from EMS textbooks and less than one page of information. Additionally, that page focused more on the ethics and legal aspects of death rather than notifying family, with little attention given in the lab to developing the skill. The need for developing psychosocial skills to support bereaved survivors with curricula explicitly designed for first responders was also identified. However, 25 years later, it continues to be an afterthought in implementing standardized curricula for EMTs and paramedics.

While studying death, grief, and bereavement in graduate school, I surveyed 113 first responders on the topic of communicating with family when a patient had died. Of those participants, 98.2% had responded to at least one call that resulted in notifying a family about a patient’s death, with only 26.5% ever receiving training on this skill and 94.6% believing more training was needed. Additionally, 92.9% of participants reported responding to a call where the patient met the criteria for being pronounced on scene but was transported to the hospital regardless, with reasons ranging from chaotic environments to distraught family members and discomfort with having to notify the family or leave the deceased on scene. Additional comments revealed that death communication is a skill that is rarely trained on or discussed yet is frequently needed by first responders while serving their communities.

In the early 1990s a two-part study began on the implementation of a module on coping with the death of a child into the PALS curriculum.2 By 1998 the researchers had published a paper on the results, reporting 98% of participants rated the course as “excellent” or “good” and concluding education on this challenging topic was not only welcomed but deemed helpful by healthcare providers. The study recommended being able to effectively integrate a 50-minute module into a two-day PALS course, noting its limitations on time for elaborating but stressing the importance of it being a constructive introduction. In 2000 it debuted in the PALS course, and in 2015 the same module was added to the Advanced Cardiac Life Support (ACLS) curriculum. As of the 2020 updates, the module’s video is approximately 11 minutes long and makes up part of a recommended 20-minute block allotted for discussion per the instructor’s manual. It is still optional.

Breaking Old Habits

Death communication is not a novel concept but rather something that has always been present on scene, yet historically avoided. Without a standardized curriculum and formal training, misconceptions about best practices in responding to these calls continue. These beliefs include avoiding the words dead and died to appear more compassionate; “doing it for the family” and transporting a futile patient to show we tried; and pushing bystanders quickly from the room because we don’t want to traumatize them. Yet all the research clearly shows these common practices are not helpful but instead can be harmful to the survivors’ healing process.

Agencies that have newly adopted a high-performance CPR model paired with guidelines to remain on scene for 20–30 minutes likely have heard feedback from field personnel expressing concerns about that extended time with family. “What if they get violent because we aren’t rushing to the hospital?” “It’s awkward standing there and not being sure what to say.” “What if they blame us for not saving them?” These are just some of the examples of resistance I have heard. If you’re personally dealing with getting your crews to be more comfortable remaining on scene, it might be a sign death communication training is missing from your program.

Many studies have revealed the psychological benefit of family members being allowed to witness the resuscitation efforts of their loved one,3–6 and resisting the urge to scoop and run to the hospital is a great way to offer that opportunity. Yet it is a practice that continues to be resisted, especially with pediatrics. Allowing family the choice to watch might be uncomfortable for the provider, but it gives family members a chance to feel like they helped by “being there” for their loved one instead of abandoning them in their time of need. It allows them to witness the efforts that truly go into a resuscitation, increasing their understanding of the event and reducing the number of times a survivor is left wondering, Was everything done to save their life?7

Practices You Can Implement Right Now

While training on death communication cannot be summarized in one article, there are a few pointers you can consider adding to your practice the next time you respond to a patient in cardiac arrest.

Immediately notify family of your plan—The moment you make contact, tell the family how long you and your crew intend to remain on scene and put them at ease by informing them your crew is doing everything the hospital would be doing if its staff were there. You can add that their loved one’s heart is not beating, so it is very important that your work not be interrupted by transporting them too soon.

Be clear, even if it’s uncomfortable—It is appropriate to hold off on using the words dead and died until the patient has been pronounced (or determined DOA), but when you do finally break the news, it is important to be clear with your delivery. While it might feel rude to say, “Your husband has died,” the use of euphemisms such as “passed away” or “we lost him” do not fully process in the acutely stressed mind of a survivor. Sugarcoating the message may create unnecessary distress or confusion, and sometimes resentment, for not being more straightforward.

Silence is still golden—It is perfectly fine to say nothing at all. This is especially true once the foundation of treatment has been applied and you have informed your immediate point of contact of everything they need to know, plus answered any questions they might have. Please resist the urge to fill the silence and trust that your presence on scene is enough for that family member to feel comforted that you showed up and responded to their call for help.

Invite them to say good-bye—If possible, welcome the family to say good-bye to their loved one before terminating resuscitation efforts. To the first responder the patient has been clinically dead throughout the call, but family members do not process their loved one as dead until the first responder tells them. Consider easing them into this final delivery by notifying them every few minutes when the patient has not responded to treatment. If efforts continue to appear futile, you might tell them, “We are going to try [giving a medication, two minutes of CPR, another shock] one more time, and if it does not work, then we will have to stop.” If that last treatment fails to change the patient’s status, you can then invite them to say good-bye while the crew continues to perform CPR and then discontinue efforts shortly afterward.

Your job is not to fix their grief—It can feel incredibly difficult for first responders to step back and feel as if they are doing nothing by allowing the survivors to react emotionally and cry. First responders are conditioned to fix another person’s suffering, so it is understandable why standing there can feel unnatural. However, it is exactly what they need from you. Grief is the healing of the wound the loss of their loved one has inflicted on them. Simply allowing the grieving process to occur, without interrupting or suppressing it, creates an ideal environment for their healing to begin.

Final Thoughts

My greatest lessons in this area did not come from graduate school; they came from my mistakes. Do not hesitate to adopt any of these recommendations simply because you “don’t feel ready.” Start now where you are and adjust along the way to fit what works for both you and the community you serve. We will never overcome being uncomfortable with this skill as long as we ignore the need for it. Eventually we have to face the reality that there is absolutely nothing optional about coping with death.

References

1. Smith TL, Walz BJ. Death education in paramedic programs: a nationwide assessment. Death Stud, 1995 May–Jun; 19(3): 257–67.

2. Wolfram RW, Timmel DJ, Doyle CR, Ackerman AD, Lebet R. Incorporation of a “Coping with the Death of a Child” module into the pediatric advanced life support (PALS) curriculum. Acad Emerg Med, 1998 Mar; 5(3): 242–6.

3. Doyle CJ, Post H, Burney RE, et al. Family participation during resuscitation: an option. Ann Emerg Med, 1987 Jun; 16(6): 673–5.

4. Jabre P, Tazarourte K, Azoulay E, et al. Offering the opportunity for family to be present during cardiopulmonary resuscitation: 1-year assessment. Intensive Care Med, 2014 Jul; 40(7): 981–7.

5. Shaw K, Ritchie D, Adams G. Does witnessing resuscitation help parents come to terms with the death of their child? A review of the literature. Intensive Crit Care Nurs, 2011 Oct; 27(5): 253–62.

6. Toronto CE, LaRocco SA. Family perception of and experience with family presence during cardiopulmonary resuscitation: An integrative review. J Clin Nurs, 2019 Jan; 28(1–2): 32–46.

7. American Heart Association: Part 2: Ethical aspects of CPR and ECC. Circulation, 2000; 102: I-12–I-i-21.

Alexandra Jabr, EMT-P, began her EMS career in 2003 and holds a master’s degree in death, grief, and bereavement. She is an adjunct faculty in the EMS department at Victor Valley College and currently completing her PhD in death psychology. Alexandra is the creator of Emergency Resilience, LLC and the course "Death Communication for First Responders: How to Deliver Unfortunate News."

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