Hope is in our mission statement:
“In emergency medicine we’re always trying to blur the line between life and certain death, to create something that looks like hope where none previously existed.”
But it is also true that…
“Death is part of life. And it’s our responsibility to tell patients and their families the truth, with empathy and compassion, even when the truth is hard to hear.”
(credit: Kevin Fong)
Table of Contents
V. What to Say
I. Introduction: Implementing Family Centered Care in Cardiac Arrest
This is a practical guide to family presence and communications during cardiac arrest. Sudden cardiac arrest is tragic and stressful for families; we have an obligation to treat them with respect, communicate with them clearly and honestly, and include them in the decisionmaking process. The goal should be family-centered care that includes “shared decisionmaking.”
Family-centered care takes into account the preferences and values of patients and their families. It changes the way EMS and the health care system as a whole provides patient care; it increases provider, patient and family satisfaction and improves patient outcomes. It emphasizes collaborating with patients and family members, at all levels of care, and in all health care settings, to ensure that the care we provide is responsive to the priorities of patients and their families.
Shared decision-making incorporates the patient's values and preferences into medical decisions and puts the patient at the center. In cardiac arrest, the benefits of continued care are often unclear, and the likelihood of a good outcome is often marginal. In these circumstances, the preferences of the patient and their family are particularly relevant to the medical decision.
In shared decision making, patients and providers work together to make health care decisions that align with what matters most to patients. This requires:
Clear, honest, compassionate communication by the provider
Unbiased explanation of the likely outcomes of sudden cardiac arrest
Understanding and respecting patient/family preferences and concerns
As a profession, we are not comfortable communicating with family during resuscitation. But we must learn to do this. It is as important as the clinical care we provide. Indeed, since most prehospital resuscitations end with the patient’s death, supporting the family and preparing them for termination is arguably more important. The only real mistake that we can make is failing to do this simply because you don’t feel prepared. Hopefully this guide will give you a good starting point and equip you with some of the tools you need. Use these tools--on the very next code you’re on—and develop your skills as you go. We will (fortunately) never become completely comfortable with telling a family member that their loved one has died. Its inherently uncomfortable. But we have an obligation to the dying, and to the living, to do everything we can to support them through the challenges of death.
II. Family Presence During CPR
It is now generally accepted practice to allow the family to witness cardiac arrest resuscitation.
Public support for family presence at resuscitation is strong.
Several surveys show that the vast majority of family members:
feel it is their right to be present, and
want at least to be offered the opportunity
Benefits of Witnessing Resuscitation
May help loved ones in their bereavement process
May foster a sense that all possible interventions were performed to try to save the life of their family member
EMS providers nonetheless are uncomfortable with family presence.
We’re worried that it may:
cause adverse psychological effects for family members
impact the performance of the resuscitation team, and
create legal risks
Studies support the practice.
Studies show that:
family members who were offered the opportunity to witness resuscitation had a lower prevalence of PTSD-related symptoms, anxiety, and depression
family presence during resuscitation had no effect on resuscitative efforts or interventions, patient survival, legal claims, or medical team stress
It has been suggested that the Hawthorne effect, which happens when subjects change their behavior due to becoming aware of being observed, might apply, with providers being more attentive, both clinically and emotionally, when family is present.
Yes, Even During Pediatric Resuscitation
Family presence is also strongly supported during pediatric resuscitation. Studies show:
Most parents want the opportunity to remain with their child during resuscitation
They believe it is their right
They believe it is beneficial to the patient
Family present during the resuscitation of a child who died reported it helped with their adjustment to the death and the grieving process
Studies of hospital personnel suggest that the presence of a family member, in most instances, was not stressful to staff and did not negatively impact staff performance
In the rare instance that family presence is disruptive to team resuscitation efforts, the family members should be respectfully asked to leave.
III. Process for Supporting Family Presence
Have a dedicated person assigned to assist and support the family member
Ideally the person will have clinical knowledge, empathy, and strong interpersonal skills
Consider the following factors:
Assess whether family presence is appropriate based on the family’s emotional state (e.g. not overly grievous, aggressive, or altered)
Confirm that the resuscitation team is agreeable
Tell the family member about the patient's condition before entering
Prepare the family for what to expect and where to position themselves in the room
Explain the specific resuscitation efforts taking place and provide emotional support
Ask if there is a family member, neighbor, pastor or other support person nearby who you can call to come to the scene
In some areas, there are organizations who will respond to a scene to provide support
IV. How to Communicate with the Family During Resuscitation
The manner in which information is delivered matters.
use simple, clear and direct language (without euphemisms or medical jargon)
be honest
be compassionate
welcome questions
allow adequate time for processing
Patients differ in their ability to integrate bad, sad, or difficult information. It depends on many factors, including expectations, previous experiences, and general personality disposition.
Range of Emotional Responses
Not surprisingly, some patients have significant negative emotional responses to receiving serious news. Multiple studies describe a range of negative patient/family emotions including shock, horror, feeling upset, disbelief, anger, and feeling depressed.
Be Comfortable with Silence
After giving the information, pause and allow the family to respond. This may be a long period of silence (10 seconds or more); they are likely to need some time to process the information.
“Is He Going to Be Okay?”
Often, a question immediately after receiving serious news reflects emotion rather than a cognitive inquiry. While being responsive to the question, also understand the emotion behind the question.
Emotionally Overwhelmed
Families cannot effectively process information when they are emotionally overwhelmed. Consider checking in before continuing on to explain next steps (“Is it ok that I talk about the next steps?”).
Don’t Make Assumptions About What Law Enforcement or Others May Have Told Them
When law enforcement or other first responders have been onscene before you arrive, and have talked with the family, don’t make any assumptions about what they may have told the family about their loved one’s condition. One approach is to ask the family what they understand about what is occurring.
Empathetic Touch?
It is unclear if empathetic touch is helpful.
A 2018 survey of patients with serious illness noted that empathetic physical touch was not considered important and was unwanted by some.
V. What to Say
There is no one correct thing to say.
At the Outset
“Would you like to be present during the resuscitation?
“Is there anyone you would like us to call for you? Perhaps a neighbor or a friend or a pastor who could come to be with you?
“I want to assure you we are doing everything we can.
Why Aren’t You Taking Him to the Hospital?
Its best to anticipate this question and tell the family upfront that you intend to remain onscene as it gives the patient the best chance of a good outcome, and that you can do virtually everything that the hospital can do.
If you get this question, possible responses include:
“We can give him the best chance for a good outcome by working to resuscitate him right here. We can’t do effective resuscitation while we’re carrying him or bumping down the road.
“We can do everything for him right here that they would do for him at the hospital, at least initially.
“Our goal is to get his heart restarted. If we can get his heart restarted, we can then transport him to the hospital for further care.
“Their heart is not beating, so the CPR is keeping oxygen and blood flowing; it’s very important that the CPR and the rest of our resuscitation not be interrupted by transporting them too soon.”
During the Resuscitation
“We’re doing everything we can for him. We’re performing CPR to keep blood flowing while we try to restart his heart.
“We use electricity to try to restart his heart. You may see him twitch when we shock his heart, but it does not hurt.
“We are helping him to breath.
“We’ve placed a breathing tube down his throat to help him breath.
“We’ve placed an IV to be able to give him medications.
“We’re giving [epinephrine] to stimulate her heart. If it works, we should see it when we next pause to check her pulse.”
Silence is Golden
Once you have explained what is happening and what the plan is, as well as answered any questions, it is perfectly fine to say nothing at all. Resist the urge to fill the silence and trust that your presence on scene is enough for that family member to feel comforted.
If Things Are Not Going Well
“We are continuing to do everything we can. Unfortunately, we haven’t seen any sign that his heart is responding to our efforts.
“We intend to continue with resuscitation for now, but we may reach a point where we decide that further resuscitation is futile. We’ll talk with you further before reaching that decision.
“I am concerned that we haven’t seen any signs that her heart isn’t responding to our treatments.
The Family Asks Whether The Patient Will Be “Okay” If You’re Able to Revive Them After an Extended Downtime
“We can’t know. But I am concerned that her brain has been without oxygen for an extended period of time, and that even if we are able to restart her heart, her brain may have suffered irreparable damage.
VI. The Decision to Terminate Resuscitation
Unfortunately, it remains true that in most cases of out-of-hospital cardiac arrest, we ultimately determine that the right course is to terminate resuscitation. Before making the decision to terminate resuscitation, it is helpful to survey the whole EMS team, to confirm there is consensus about the decision to stop. This is a final check that there is nothing further worth trying and it may be helpful to both the team and the family in understanding and accepting the decision.
Having family members present throughout the resuscitation facilitates this decision and helps ensure that the family feels included in the decisionmaking. It is easier to have the conversation regarding the decision to terminate if the family has been involved all along, and is aware that their loved one has failed to respond to treatment. It is much harder if the family has been kept segregated, and the first conversation you have with them is when you sit down to explain that you are terminating resuscitation and that their loved one is dead. In the shock of that moment, it may be impossible for the family to process the decision you are asking them to participate in.
The decision to terminate resuscitation should be an act of family-centered shared decisionmaking. Medically and ethically, you should terminate resuscitation when further resuscitation would be futile. Your primary ethical obligation is to the patient, and you should no longer continue to provide medical care if it offers no benefit.
But “medical futility” doesn’t arise at a precise moment in time; it emerges in the final stages of the resuscitation as it becomes clearer that ‘one more’ set of compressions, one more defibrillation or one more dose of epinephrine will not make a difference. It is a process, and we continue our resuscitative efforts until we have established medical futility “beyond a reasonable doubt.”
And while our primary duty is to our patient, we do owe an ethical and moral obligation to the family as well. We owe them the opportunity to participate in shared decisionmaking regarding their loved one. We owe them the chance to see that everything possible was done to save the patient’s life. We owe them the prospect of closure. We owe them the chance to say goodbye.
So what does “shared decisionmaking” actually mean in this context and how do you carry it out in practice? It means that while you as the healthcare provider initiate the decision to stop resuscitation, the family must be given a chance to participate in that decision. As noted above, it’s a mistake to only begin to include the family in that process after you’ve made the decision to stop. By including them from the outset the entire process, including the ultimate decision to stop, is one of shared decisionmaking.
My approach…
first, to explain that we have done everything we can do, and that while we plan to keep going for the moment, we’re planning to stop if we don’t see any sign that his heart is responding. next, to say that we’re going to be stopping at the end of the next cycle. I have NOT technically asked them for permission to stop resuscitation. But I have explained that we’ve arrived at a point where we are approaching futility, I’ve given them notice of the intention to stop and an opportunity to object.
finally, “We’ve tried everything we can think of to get his heart restarted, but we haven’t been successful. “We’ve made the determination that there is nothing further we can do, and we’re stopping resuscitation.
Passage of Time Distorted
During a cardiac arrest, the passage of time is distorted, both for the family and for the EMS team. It may be helpful to explicitly say to the family “We have been trying [for over half an hour]. We’re preparing to stop resuscitation.
It may also be helpful to give the family a summary of what has occurred and the efforts you have made:
“When your mother collapsed, her heart stopped. You did CPR, which gave her the best chance possible for a good outcome. The police officer continued the CPR when he arrived, and applied a defibrillator to try to restart her heart. We’ve continued CPR to keep the blood flowing to her brain and lungs and heart. We’ve also been giving her oxygen to keep her vital organs alive. We’ve also tried to use the defibrillator multiple times, and we’ve administered medications intended to restart her heart and to suppress harmful rhythms. We’ve checked her blood sugar. We’ve given her fluid to help support an adequate blood pressure.”
What Happens in the Rare Instance Where the Family and the Providers Don’t Agree
This is a very challenging circumstance. There are providers and ethicists who would argue that while you should include the family in the process, it is unethical to continue once you have clearly passed the point of futility. Others, and I would generally put myself in this camp, believe that if the family objects to terminating resuscitation in the field, then it is appropriate to continue and to transport the patient to the hospital. One final possibility is to involve medical control, but if the family seems firmly set in their view that the patient should be transported, this is likely an emotional, as opposed to rational, decision, and a discussion with a doctor on the telephone is unlikely to persuade them to change their minds.
Invite Them to Say Good-bye
If possible, welcome the family to say good-bye to their loved one before terminating resuscitation efforts. While from your perspective the patient may have died at some earlier point in time, family members do not understand that the patient has died until you tell them. Before you actually cease efforts, you can then invite them to say good-bye while the crew continues to perform CPR and then discontinue efforts shortly afterward.
VII. Transport to the Hospital When Further Care is Futile
In the past, I used to say “no one ever died in the back of my ambulance” and it was true, because I transported every victim of cardiac arrest and continued resuscitation until care was transferred to the hospital and they made the ultimate decision to cease resuscitation.
This made the process easy for me, if I am being honest. I was never forced to make the hard decision to terminate resuscitation.
Transport Where There May Be Benefit, But Recognize That Termination in the Field Should be the Norm
Of course, if we obtain return of spontaneous circulation, we will be transporting the patient to the hospital for further care. In addition, there are certainly circumstances in which prolonged resuscitation, and transport to the hospital, is warranted. This would include causes for cardiac arrest such as STEMI, pulmonary embolism or hypothermia that might be amenable of being fixed at the hospital. But this is the rare exception. In most cases, termination in the field is warranted. Not transporting when further care is futile respects the dignity of the patient and family, reduces risk to providers who would be providing CPR and performing other procedures during transport, avoids multiple, additional, expensive EMS and hospital bills for the family and helps ensure the availability of limited EMS resources for other patients.
Are You Transporting Because it’s the Right Thing to Do, or Because its Easier Than Telling the Family that Their Loved One Has Died?
When consider transporting a patient with ongoing cardiac arrest, we must critically ask ourselves whether we are transporting because we think there is a reasonable chance that hospital care will make a difference, or are we transporting because it is the path of least resistance. It’s easier for us to transport with continuing CPR than it is to have to tell the family that their loved one has died. Because we’re in the business of “hope,” it’s simpler sometimes to continue providing care than it is to face the reality of telling a wife or a son that there is no hope.
VIII. What to Say Immediately Following Termination
Immediately following termination, it is appropriate to tell the family directly:
“We have stopped CPR. I’m very sorry, but your [husband] has died.”
As noted elsewhere, it is important to be direct.
Are you sure that she is dead? How do you know?
Answer this question directly, but recognize that it represents the challenge of coming to terms with a loved one’s death more than a desire to understand medical details. You can perhaps say “Her heart has stopped beating, and despite all our efforts, we haven’t been able to get it to respond. We have been monitoring both her pulse and the electrical activity of her heart, and unfortunately there is no pulse or activity.”
IX. Communication and Care Following Termination
Do Not Attempt to Fix Their Grief
Family members will have a wide range of emotional responses immediately following a patient’s death. They may be crying, angry or inconsolable. Do not attempt to fix their grief. Rather, your role is to simply stand by while allowing survivors to react emotionally. This is hard. We are trained to address the suffering of patients and their family members, including by providing emotional support. Standing there and simply accepting their grief may be profoundly uncomfortable. And yet simply “being present” is what they need form you. Allowing the grieving process to occur, without interrupting or suppressing it, is the right way to allow the healing to begin. Be aware of spiritual, cultural or religious beliefs that may impact how the family responds to the patient’s death.
Allow the Family to Be With Their Loved One
After a resuscitation, ask if the family would like to see and touch the patient. Where possible, decisionmaking about access should be made in collaboration with law enforcement, who are often on scene when the decision to terminate is made. You must balance compassionate care of the family with the awareness that the patient and scene are a potential crime scene. It is often impossible to determine whether a potentially lethal condition has resulted from intentional or accidental causes. The family should be offered access to their loved one, while making reasonable efforts not to compromise potential evidence.
Ask the family member if they would like you to talk with other family that may have gathered. If asked to help address the family, clearly identify yourself and explain your role. Be compassionate rather than clinical. Use the patient’s name. Welcome and respond to all questions. Be prepared to explain what happened, the care you provided, why you decided to terminate resuscitation and why you didn’t transport to the hospital.
Be prepared to provide contact numbers for outside agencies, mortuary services, etc. Some agencies have a checklist to provide to families for to help provide guidance regarding the steps to take immediately following death.
Allow the Family to View the Body
Unless aggravating circumstances exist (e.g., certain types of suicide, disfiguring trauma, a possible crime scene, etc.), allow the family to view the body. Some family members may want to be alone with the deceased–allow them their privacy. In some cases it’s important to discuss matters such as organ donation.
Be Aware of your General Demeanor
The family is experiencing a profound loss, and it is inappropriate to make small talk with other EMTs or firefighters on the scene. We often do not realize when we may be overheard by family members on scene. Also, be aware of the impact of your behavior when you are outside, where others can see you.
X. After the Call
Talking With the Family
Even small tokens of continued concern have a huge effect on families. In a study of bereaved survivors of adult patients, a condolence card, signed by direct care profound impact. Ninety-four percent of the recipients still had the card in an easily accessible place 1 year later. One woman whose husband died in the ED stated that the card helped her cope with his unanticipated death, because “at least I know he died among caring people.”
Families sometimes report that they would benefit from contact with the people with whom they developed an intense bond during the resuscitation; the people who guided their initial acknowledgment of the patient’s death; the last people to see their family member or child alive, with whom they shared an overwhelmingly difficult event in their own lives. Parents may view providers as important keepers of the memory of their child.
Care for EMS Providers After a Challenging Call
After we take care of our patients, it’s our job to take care of ourselves and each other. Death and delivering death notifications is stressful. In the past, it was common practice to suppress feelings of grief and stress, to internalize it, and simply deal with it. That approach is destructive, especially over the long term and many challenging calls. Instead, we need to figure out ways to care for ourselves and our partners after a challenging call.
Ask. Talk. Cry. Question. Understand. Do what you need to do to make sure your partner is okay. The next patient depends on it, and so does your partner.
Consider taking the crew out of service, tasking a supervisor to support the crew, and giving the crew to talk about the incident among themselves. No one should be forced to participate, but everyone should be given the opportunity to participate. Give people space but stay in touch with them to make sure they continue to be okay. Supervisors should use good communication skills, be supportive, meet and anticipate needs, and plan follow-up. Not everyone will need direct support. EMS providers typically handle stress differently and, overall, better than the general public. But everyone’s reaction is individual, based on their own resilience, the role they played in the resuscitation, their past experience and other things occurring in their life.
Resources