The Q Word Podcast

"The Gift of Being There"

Welcome to the Q word, a podcast about the tips, trends, and taboos of emergency nursing, where we pull the hospital curtain back on issues that emergency nurses and their patients often think about, but seldom talk about. You found the Q-word podcast.

Lisa  
This episode is about family presence at the bedside during resuscitation. Can you tell us a little bit more about that just to introduce this subject?

Nyssa  
So the idea behind this practice is that when there is a patient who is coding there in a code blue situation, respiratory arrest, cardiac arrest, and in our department, we also do trauma resuscitation, that the family members should be given the opportunity, the option to come and be at the bedside at that time.

Lisa  
Is this an established practice in hospitals?

Nyssa  
This is a practice that has been gaining headway. It actually started back in the 80s. The idea of this, it still has a long way to go, which is what I'm hoping will come out of this episode. 

Lisa  
Okay, give me a little background on this. I know that in hospice situations, family members are often brought in, but there are other situations like this. 

Nyssa  
So this family presence that we're talking about is sort of an acute scenario. It's definitely a practice that is done in hospice and palliative scenarios that you discuss. This is a little bit different. This would be an acute scenario, which is typically what's happening in the ER. My personal history with it is that I was actually attending an Emergency Nurses' Association meeting, and the speaker was a clinical nurse specialist in palliative care, my friend Amanda Lucas, and she was talking to us about the role of palliative care in the ER, and she introduced me and my nursing practice to this idea. And then she kind of posed a question to those of us that were there: why aren't you doing this in the ER? And that question, for some reason, just really hit me. And so I started digging to find out what it would take to do this. Why, in fact, was there a reason that we were not doing it, as I heard? The challenge we received in that meeting is really what kind of initiated my research into this and the development of the practice and policy in our department. 

Lisa  
So you've done a lot of research on this. What did your research turn up?

Nyssa  
The idea of family presence first started at a hospital called Foote Hospital in Jackson, Michigan, around 1982. And what happened was that they had two separate incidents. The first one was a patient that had coded at home, and the family member was there in the home. They loaded up into the ambulance with the paramedics en route to the hospital, and once they arrived in the ER, as they normally are at that time, they were escorted out into the waiting room. In this case, the family member refused to leave the room and wanted to be included in the treatment room, which seemed to make more sense to them. They'd seen it go on at home. They'd seen it on the entire ambulance ride, and they wanted to continue to be in the room. The second incident that happened right after that was that a police officer was shot. And the wife rushed to the bedside in the ER, rushed to the ER, and begged them to let her enter the room. She was afraid these might be her husband's last moments. And she wanted to be able to spend them with him. And so she begged them for just a few minutes with her husband. And they allowed her to go in. In both of these cases, the chaplain was present and was able to be there with the family members. And so the health care practitioners that witnessed both of these incidents recognized that something was different, something had changed. There was a turn in health care and they were wise enough to recognize that these family members were leading this practice. They just had a desire, and even demanded in both cases, to be present.

Lisa  
So this was something that had not happened before, or if it had happened before, the hospital had been reluctant to allow the family members to do what they wished.

Nyssa  
Right. So, normally, you sit in the waiting room while we take care of whatever is going on here.

Lisa  
Okay.

Nyssa  
So these health care providers at Foote Hospital looked into this. They went and spoke with both families and got feedback from them. And then they decided to take it even farther. And they went to the last 18 codes, family members of the last 18 codes that they had, and asked them "So listen if you had been given this option to be at the bedside while your family member was coding, would you have wanted to be there?" And they found that 72% of them said they would. This is where family presence at the bedside was born. And it was all because of these practitioners at Foote Hospital. So they developed this practice of doing family presence at the bedside. After about 50 family members had 50 codes with family presence, they continued to research and asked these folks about their experience with family presence. Three-fourths of them said that their adjustment to the death was made easier because they were present in the room. Over half of them felt that their presence was beneficial to their dying family member. And 94% of them said that they would choose to do it again if a family member was having CPR performed on them and they were given the opportunity.

Lisa  
Wow, that's pretty big numbers.

Nyssa  
Yes. And so this practice really, really caught on, made an impact and began to spread. Now I can tell you that my dad tells a story about when I was born, how he and my mom were in labor for some 36 hours, and he sat out in the waiting room. And he would always joke that he smoked an entire carton of cigarettes. He read a novel, and he emptied the vending machine. And then I was finally born and he was invited to come and meet me. One generation later, we have recognized that those first few moments of life are so important that fathers are brought into the delivery room. They're no longer sitting in the waiting room until the baby arrives. They are even brought in when things are not going well, when there are dangerous circumstances, even into the operating room for C-sections. The father, support person, they're brought in, the expectation is that they are at the bedside. So what we understand is that those first few minutes of life with that baby are an important moment for family bonding. And those first few little breaths, the family participates in and witnesses those, and that's really important. And what we're finding now is that on the other end of life, at the other end of the spectrum, those last few moments, those last few breaths are equally as important for family bonding and for beginning the grieving process if that's the way the code is going to go.

Lisa  
So who is it that's leading the charge on this new policy, not just at the Foote Hospital but all over the country?

Nyssa  
Well, the movement slowly began to spread from Foote Hospital, but just around 10 or 12 years after the very first incidents, we talked about the Emergency Nurses' Association and actually issued a position statement on having family presence at the bedside. It was called a bold move by the Emergency Nurse Associations. It took other organizations a lot longer to catch on. So in 2005, the American Heart Association issued their position statement in favor of family presence and put it in their courses like Advanced Cardiac Life Support and Paediatric Advanced Life Support. So now, in the current day, there are a lot of organizations that have position statements in favor of family presence. I just kind of want to mention a few of them. So you can see how wide-sweeping this idea and the support for it is. These are the other professional organizations. Yes, so it is included in the Trauma Nurse Core Curriculum, which is a course that is sponsored by the Emergency Nurses Association, the American Association of Critical Care Nurses, the European Federation of Critical Care Nurses, the National Association of Social Workers, the American College of Critical Care Medicine, the American Academy of Pediatrics, the National Association of Emergency Medical Technicians, the American Pediatric Association College of Surgeons, Pediatric Surgical Association, Psychological Association, the Trauma Society, the Association of Professional Chaplains, and the Child Life Council, and many more. My point in just listing these off and running through all this is that it is a widely accepted practice. 

Lisa  
It sounds like I mean psychiatrists, religious organizations, social welfare organizations, mental health organizations, nurses, trauma, EMTs, physicians, and surgeons. Wow, those are pretty strong endorsements. 

Nyssa  
In addition to that, it's an international movement as well. So it started in Michigan in the United States in the 80s, but it has moved to the European Federation of Critical Care Nurses, the European Society of Pediatric and Neonatal Intensive Care, the European Society of Cardiology, and Cardiovascular Nurses and Allied Professionals. So I mentioned that because it is an international who has moved across the pond.

Lisa  
Nurses seem to be at the core of leading the way in terms of espousing the idea of family presence at the bedside during resuscitation. Why nurses, do you think, as opposed to physicians or even the family members themselves?

Nyssa  
Well, it's not just nurses. It's even more specifically the emergency nurses. So there are a lot of reasons. One of them is, unfortunately, because of what we do. We are comfortable with code scenarios. We frequently code people and we're very, you know, Code Blue is not an uncommon event in the emergency room. So it's something that we do a lot. We also have an environment of teamwork. Even coworkers call one another family. And so, as you pull together as a team, it promotes this idea of bringing the family in when you're coding someone in a team effort. The relationship between ER nurses and ER physicians is a little bit different. In other departments, they are there from shoulder to shoulder 24 hours a day. Other departments have to call a physician in or call them on the phone. We have our physicians with us. 24/7. And so it's a very different relationship, and one of camaraderie and collegiality. There's really no such thing as visiting hours in the emergency room. Families come in all the time. We are used to doing any kind of care with patients in front of their families. You know, occasionally we will ask them to give us five minutes or, you know, wait just a moment outside of the room. But otherwise, family is there, and we don't have blocked out hours where they don't come in.

Lisa  
I can't help but think of all those moments in movies and television where, after some horrible accident, the family has been stuck waiting in the emergency room forever, just to have the doctor come out and say something like, "I'm sorry, we tried as hard as we could, but we lost them." I don't know. It just always seems so cruel to make people wait for that kind of bad news.

Nyssa  
Yeah, and the research actually doesn't support that practice. The research shows that when families are sitting in the waiting room, their imagination of what is going on in the code room is actually much worse than what is actually going on in the code room. The benefits to the family: what the research shows is that when we bring them in, they begin to realize the seriousness of the patient's condition. So you know, we said oftentimes this is an acute event or this is an exacerbation of something chronic that has happened acutely. So they are beginning to realize the seriousness of the patient's condition when they see what's happening and what's going on. It also allows them to appreciate that everything has been done. It does dispel the dread of the unknown. It provides them with some feelings of being useful. You know, sometimes they can contribute to the code by telling us, you know, what happened leading up to this or telling us some of the past medical history, and that gives them a sense of purpose and a feeling of usefulness. They are also able to express the values of their family members, so Grandma would not want this. You know, grandma would not want to be dependent on the machine, for example, of course, that facilitates their need to be physically near their family, they want to be with them and being near them can provide comfort to the loved one. It sometimes strengthens the patient's will to live. It provides this patient's family connection and bonding. It even provides a bond between the patient, the family, and the healthcare team. It alleviates the guilt about the family member not being with the patient in crisis. It allows closure, it facilitates the grieving process, and it allows them to say goodbye. One of the things that we teach nurses is that, for the layperson, being alive means being pink and warm. That is their definition of it. So even if a patient is pink and warm, it is simply because we are beating their heart for them through compressions. It's really important for the grieving if we allow them a few moments to say goodbye, give them a kiss, whisper those things in their ear, or hold their hand while they are still pink and more even though we know that maybe brain function has been gone for a long time or grandma's not here anymore, for the layperson that is really, really huge in the grieving process that they can say goodbye while they're "alive". 

Lisa  
Now, I'm assuming that there were people in the hospitals who were not as hot about this idea. Are there reasons why this might not be a good idea?

Nyssa  
There are some arguments that are made against family presence. One is that practitioners are concerned that the code will lengthen the time of the code will be lengthened because the family members are there at the bedside. And actually, what the research shows is that it's actually the opposite direction. When family members see what is going on with CPR, they see the vital signs, and they see the efforts that are being made, it takes them less time to say, "That's enough." Let's stop. Grandma would not have wanted this. So actually, it's the opposite- codes are shorter when family members are brought to the bedside. Another concern that is brought up is that staff members will experience more emotional stress. And it would have inhibited their performance. So it's true that you have this raw emotion right there in the room with you that normally is down the hall and behind a closed door. And so it is true that healthcare providers need to find some different coping mechanisms because it is more emotional and more stressful. Does it inhibit their care? No, it doesn't. But do they have to develop some different coping mechanisms? Yes, they do. And I'm going to talk about how we can do that. Naysayers will say that families can't tolerate the code and that this is too much. And in fact, that has also not been found in the research and the evidence. People say that they worry that family will interfere with the care or get in the way of the code.

Lisa  
Yeah, I would be concerned that somebody would throw themselves onto the body or onto their family member and try to shake them alive or something like that.

Nyssa  
And that's not what's found when you do this policy in a prescribed way. Family members do not interfere with the code and then a really big argument against family presence is there's a fear that family members who witness errors or misunderstand what's being done in the code, what they see or what they hear, are more likely to sue, especially if the outcome of the code is a death. And the research shows, in fact, that when family members are present and a mistake is made, even when the family members recognize that mistake, they are less likely to be litigious because they believe that we have thrown open the doors; that we are being completely transparent. We are not hiding anything. And so there are actually fewer lawsuits from family presence codes than ones where they are not.

Lisa  
It just seems to remove a whole bunch of the unknown that must circulate around this horrible, horrible experience that people are going through when they lose a family member. They are able to be there to see what's happening, how much work is being done, how hard people are trying to save somebody's life, and then to see that it's an inevitable conclusion anyway.

Nyssa  
Right. And that's what the evidence shows as well.

Lisa  
You're talking about evidence, are there papers in support of this? Is it, just the not, clearly not just the position statements that you've mentioned?

Nyssa  
As you know, there are extensive research projects. There are an extensive number of research projects. If there's someone who's interested, I have bibliographies that I can provide. So yeah, there's quite a body of research on family presence at the bedside.

Lisa  
Great, we can have people email us if they're interested in finding out about that bibliography or getting some more information about it. 

Nyssa  
Sure I'd be happy to share that. 

Lisa  
So if you so, I'm assuming that there's a policy or practice that you need to put in place, that you're simply not walking out there and you know, telling, you know, brother, Jimmy, and Mom and Dad, don't, you know, Hey, come on in here and just stand in that corner. I'm assuming that there are some very formalized processes that you have. Can you explain those and how those policies came about?

Nyssa  
Right. And so there is the practice of bringing family to the bedside. And then there's the policy. One of the key things to having a successful practice is having a written policy. So this needs to be more than just something you're doing; it needs to be something that you have written down, so that it is a fairly consistent practice, from family to family and patient to patient.

Lisa  
Okay.

Nyssa  
What I'd like to do is share the experience of how we developed our policy so that if there are folks who are interested in bringing one to their own facility, they can kind of see some of the steps that were taken, and then I'm happy to share what we came up with them as well. So first, I benchmarked in my state to find out what other hospitals and what other ERs were doing. I found that most ERs, they were doing this on a case-by-case basis. And the way that this worked was you'd have an 85-year-old lady with stage four cancer with metastasis come in coding and here we are, doing all these heroic efforts for someone that we know that it's very, very unlikely that we're going to bring her back. And if we do, it's not going to be for long and the quality is going to be very questionable. And in those cases, what would happen is the ER physician would feel some frustration or the providers would feel frustration, and they would say, "Go get that family and bring them in." I want them to see what we are doing to her. And it was almost a punitive invitation that they were doing it on a case-by-case basis. That's not the same

thing as what I'm talking about with a family present. 

Lisa  
Got it. 

Nyssa  
So what I found was that there were no adult ERs in my state that had a written policy. There was one ER locally in my area in my region that actually said they discouraged the practice. So this is 30 years after what happened at Foote Hospital and there are still ERs that are discouraging this, actively discouraging this practice. Our regional children's hospital was practicing this every single code, every single department, and doing it very successfully. There's another very cutting-edge teaching hospital and research hospital in my state that was attempting to write a policy hospital-wide, but because you have to have so many people on board and so much support and so many physicians to buy in, they were meeting a lot of resistance and a lot of roadblocks. And so, you know, when I was talking to them and benchmarking with them, they were feeling a lot of frustration. It was a very slow-moving process. I did go to a state just north of us and found an ER where they were practicing family presence on the pediatric side, but not doing it on the adult side, which I found very interesting. When I went just south of us, one state south of us, I finally found an emergency room, a level two trauma center, that had a written policy that was doing it for both adults and pediatrics. So it just kind of gives you an idea of what's going on with this practice, how some people are, you know, espousing it and other people are still kind of discouraging it. When we decided to write a policy, we decided not to reinvent the wheel. And so we borrowed policies from the children's hospital and from another hospital out west that had them published online. And we chose what pieces and parts we wanted that were appropriate for our era. And then we added ours and theirs, and when I say we, we had developed an interdisciplinary committee. It was made up of our physician leadership in the ER, the nursing leadership in the ER, the nurse educator, we had staff nurses represented on the committee, we included our palliative care physician, licensed marriage and family therapist, and hospital police, and our customer service reps were represented on the committee. So we decided to piece this together. The piece that we added that wasn't in either of the other two policies that we used was that people were not allowed to bring cell phones or take photos. No kind of recording device would be allowed at the bedside. And if that were, you know, witnessed, they'd be excused and asked to leave.

Lisa  
And that just sounds like respect for what's happening at the moment.

Nyssa  
Right, that's right. 

Lisa  
I'd be surprised if somebody wanted to break out a camera.

Nyssa  
You would be surprised at what people want to take pictures of. We did have to define some things, like the family member, who is defined as a relative or significant other with an established relationship with the patient. Family presence is defined as the attendance of one or two family members at their loved one's resuscitation.

Lisa  
Okay, so if the entire extended family of your cousins and your aunts and your uncles are there, and there are 20 people in the waiting room, they're not all going to fit.

Nyssa  
Right. So, as the code is actively being run, we limit it to two family members. If there is a point where they decide we want the efforts to stop and we want to just be with Grandma during her last moments, then we're going to step away as healthcare providers and they can bring in however many people that they want. It's basically a space issue, which is what it kind of boils down to. So, when we are no longer actively working on the patient, we're just providing that end-of-life care. They can bring in as many family members as they want. But as the code is actively going on, we have to limit it to two. 

Lisa  
Got it. 

Nyssa  
Resuscitation is defined as life-sustaining or life-saving measures. And then a family support person. And this is another thing that is really key to having a successful policy. You can't bring family members in and just stick them in a corner; they have to have a support person. Ideally, that support person would be a nurse or another clinical person, because I like it when the support person can sort of narrate what's going on and explain to the family what this medication is, what this procedure is, what's happening, what these vital signs mean, and so forth. But having a clinician available, you don't always have that resource. You don't always have the staffing to support that. So it can be a chaplain or a customer service rep. It can be a clinical technician. But it has to be someone and if staff won't support one person to be dedicated to the family, then this policy, this practice should not be offered. So the way that the procedure unfolds is that you're coding a patient and anyone on the healthcare team can say, "Hey, we need to consider family presence." That can be led by the physician, it can be led by the nurse, it can be led by the respiratory therapist, anyone who's present in the code can bring up this idea of family presence. Everyone in the code needs to decide Yes, this is something appropriate. And this is something that we would like to offer to this patient's family. So the team may have decided that this is an appropriate offer for this patient. Then we have to decide who's going to be the support person. That person is designated. They go out to the waiting room, where they assess the family for appropriateness. And what this looks like is that they're just going to have a brief conversation. "Hi, I'm Nyssa. I'm taking care of your grandfather today. I just wanted to come and talk to you and let you know what's going on". And as I'm having this update, I'll talk with them. I'm assessing to see if they are emotionally stable. If they are so unstable and already throwing themselves on the ground, yelling, and screaming, and cannot be redirected, then they're not appropriate to invite into the code room. If they are intoxicated in any way, they are not going to be invited into the code room. If they have an altered mental status or are not able to understand what I'm saying, if they are combative, or if they are a family member who is suspected of being the perpetrator of abuse that has landed this patient in this scenario, they're not going to be invited in and that's it. Those are the only exclusion criteria. So it's very, very narrow. If I have assessed the family and decided that none of those exclusion criteria apply to them, then I will invite them to come in and I will say, "You know, we are currently coding Grandpa and wanted to know if you all would like to come in and be in the room." While we do this, There are a number of families that will say "absolutely not" and they know that this is a limitation of theirs and that they don't have an interest in being there. And they would decline right there at that moment. And that is fine, and no means no. We don't try to convince them or coerce them. We continue to support them as we would in the quiet room. And then, you know, support the code efforts of the patient as well as provide them updates. If they say yes, then as we are walking to the code room, I will continue to have a conversation with them. And in this conversation, I'm sort of establishing the ground rules of what's going to happen, what they're going to see, and what my expectations of them are in a very gentle, just conversational way. So I will let them know that there's just going to be two of you. I'm going to be with you the whole time. I'll show you where to stand. Any questions that you have about what's going on you will direct me to. I don't need you to be yelling out to the physician or the other code members. They need to be focused on grandpa. We need to be quiet so that we can allow the code team to talk. Of course, no cell phones, no photographs, and no recordings will be allowed. If at any time you want to step out and you don't think that this is where you want to be anymore, that's fine. I will escort you right back to the quiet room. And that's it, then we're ready to go in. Another key element that must happen is that as we arrive at the door of the code room, I'm going to have them wait just a moment. And I'm going to step in first and I'm going to clearly announce to the code team that, "Hey guys, I am bringing Mr. Jones's wife and daughter to the bedside. They are going to be present at the bedside". So can you imagine why it's important for us to announce that family is coming in?

Lisa  
Because when you don't know there's someone there listening to what you're saying, you might be a little bit more free in your reaction to what's happening on the table.

Nyssa  
Right. So when we know family is present, we are a lot more sensitive to that. We are able to be sensitive to the fact that they are present.

Lisa  
Absolutely.

Nyssa  
So once they've been announced and the family comes in, I will direct them to an area where they will be out of the way. As we were walking to the code room, I also described to them what they would be seeing. You know, Grandpa might not have any clothes on. Are you okay with that? There might be some blood. There's a tube that we've put in to help him breathe. They are doing compressions on him. You know, just sort of describing how the code will look when they come in. The support person needs to remain with the family all the time. They don't cycle into doing compressions. They don't run out of the room to grab meds or supplies. They are with them all the time. They will provide comfort measures. So if the family member needs a chair to sit in, if they need Kleenex, if they need some iced water, that's going to be the facilitator's job. We don't want to pull any of the code team members who are focused on the patient's way of doing those kinds of things. If it is appropriate, the family provider or family facilitator will allow the family to touch the patient. Hold hands, Also, speak to them. If the code scenario allows for it, any kind of medical or nursing jargon or terminology that's being thrown around, the facilitator is able to sort of translate and explain what's going on, as well as narrate what's happening. When I'm doing it, I like to even sort of foreshadow what I expect is going to happen. If this code is not going well, I might use some language to say something like, "You know, it really worries me that we have to give this medication every five minutes because his heart is not responding as we were hoping that it would be something like that." That kind of gives them a little idea of where this might be headed. Or if this is going well, I might say, you know, we're able to feel a pulse now, which is a positive sign that we are still very, very sick, but something like that.

Lisa  
I think you should give training to people. Ideally, would a facilitator be trained on how to appropriately narrate what's going on?

Nyssa  
Yes, that's part of the that would be part of the training process. That's right. Yeah.

Lisa  
I could see you being clumsy or someone with a little less sensitivity not choosing their words as carefully as I'm sure you do when you are faced with a grieving family member watching their loved one expire.

Nyssa  
Right, and when we have people who aren't comfortable with that, you know, just being there and patting them on the shoulder, just being there to hand them a tissue. It's enough. It's enough. The family facilitator is also responsible for recognizing when the family may not be tolerating it. So when they are becoming too emotional or disruptive, or by their own requests, they need to step out. And this is why we included hospital police on our committee. So if we were anticipating that there may be an instance where the family was becoming disruptive and even maybe impeding the care of the patient and we asked them to leave and they refused, at that point, hospital police would need to come in and help us escort the family out. So we built that into our policy.

Lisa  
Do you inform the hospital police before you bring family members into the room? Or are they ubiquitous enough that you know if you ring the alarm, someone will be there in a hot minute?

Nyssa  
Yes, they are. We have two hospital police officers in our department on duty 24-7. So okay, they are not far away if we need them. 

Lisa  
Okay, cool.

Nyssa  
So once the code has ended, whichever way the code ends, if it's a patient death, or if it's a resuscitation, a debriefing was conducted with the family that basically just looks like an update, and the questions that they had about what they saw will be addressed. So I believe that all family members should be offered the opportunity to be present at the bedside. But there are some populations where it's really key. The first population is the pediatric population. 

Lisa  
Of course.

 

Nyssa  
Yeah, and you can imagine, Lisa, that you have children that you love in your life, and at their greatest moment of need. There's not going to be anybody that can keep you away from the bedside and where you need to be with your child. And it's important for parents and family members to be able to be there.

Lisa  
Absolutely. Yeah, you wouldn't be able to drag me away from my child in their last moments.

Nyssa  
That's right. And the other population that's really important is the trauma population. And the reason for that is that when you have an elderly person or someone who has a chronic illness, somewhere in your subconscious, you have probably entertained the idea of getting this bad phone call about, you know, grandma's not well or, or whatever. Trauma often happens to young, healthy people. And that's not something that we have entertained very much, so it's really important that when you put your child, your 16-year-old, in the car, you send them off to school just fine. You didn't think a thing about anything bad happening to them. And now I'm calling you on the phone to say that they are in the trauma bay, and we are resuscitating them. So it's really important for family members to be at the bedside and see what's happening so they can begin to absorb and wrap their heads around how their life just got turned upside down. There are a couple of populations where family presence is not offered. And the first one would be a code where the EMS providers, prehospital providers find someone down, unknown downtime, they're in asystole which means "no heartbeat." They've never had a heartbeat. They're providing all the advanced cardiac and cardiac life-saving techniques and have been for a period of time, a long period of time, usually 30-40-45 minutes. They're getting no results, no signs of life, and they're bringing this patient in. First of all, it's unlikely that family is going to be on the heels of this. But if they are, what we know from that kind of prehospital report is that they're basically bringing us someone who is already dead. And so, therefore, we are not going to do everything possible because that's already been done for the last 45 minutes. In all likelihood, we'll do a round or two of ACLS, we'll have a look at the heart and see if there's any motion wall motion at all, any signs of life at all. When we find none, this patient will be declared dead. So we don't want to tell the family we're going to bring you in and show you that everything has been done when we're not doing everything possible, because,

Lisa  
It's already been done.

 

Nyssa  
This is a futile case, right.

Lisa  
Where there's nothing possible to do.

Nyssa  
Right. There is a pediatric version of that, and those are the SIDS babies. So mom comes in the morning and finds that the baby has been lost somewhere in the night. There were no signs of life and this baby was brought into us. We're not going to do everything possible because, again, it's a futile case. So in that instance, we will have the family come in once the child has been declared. They can hold that child, they can spend as much time as they want with that child, but they're not going to be brought in during the code process because it's going to be a very different type of code.

Lisa  
It's more of a formality than it is actual giving them a chance to live.

Nyssa  
Right. So, in these cases, there is no sign of life. It hasn't been there for some time.

Lisa  
There's nothing to be done. 

Nyssa  
Our efforts would be futile, right?

Lisa  
Got it. So it's not that you're not doing everything possible. It's that there is nothing to possibly be done. 

Nyssa  
Correct. 

Lisa  
That ship has already sailed.

Nyssa  
Correct.

Lisa  
Got it. We know when you try to bring people in and we know when you don't bring people in. What lessons have you learned along the way as you've been incorporating this new policy into your hospital?

Nyssa  
So one of the things that I learned on a personal basis when I was the family facilitator is that I would have, I'm thinking of a particular case in particular, where a husband and wife were sitting at dinner and the wife collapsed right there at the dinner table across from him. So this was an elderly couple. He watched her collapse and called 911. Immediately, they responded within minutes and began the resuscitation or attempted resuscitation. She came into the hospital, we had him at the bedside, I was there, I narrated the care for him the whole time, and the code was unsuccessful. After the patient had been declared, and the code was over, he had a lot of follow-up questions, and I was able to tell him that there were a lot of questions that led me to think that he might be feeling some guilt over this. I should have noticed something I should have called earlier. And I could say to him, "You called the minute that she goes down, they come immediately." Remember when we did this? And remember, when we did that? There was nothing else that could have been done. You did everything possible. So what's happening is he's trying to wrap his head around this flurry of events that have just happened. He's trying to create a narrative of what just happened that he's going to be retelling dozens and dozens of times in the next few days and for the rest of his life. And it's really important that as I help him write that narrative, he understands that there's no guilt to be had here, that everything really was done that could be done. And that is the piece I think that provides the most help in the grieving process: when I'm able to help him understand what just happened in this whirlwind of bad events in his life, that was really important to me. I do remember that when we were doing some of the training, there were some naysayers. We had some folks who said, "We are never going to see the benefits of this at the bedside." And what actually happened was that they were some of the ones who saw the most benefit from this at the bedside. So when we do trauma resuscitation, the majority of those patients do survive. And so the family members are so very grateful to have been there. And then, of course, they have a good outcome or a better outcome than most code blues. And so those practitioners actually become believers. When they witness this at work, I will say there was an instance where we had a child who came in on a code scenario. We brought her father to the bedside and allowed him to be at the bedside while we coded her. The code was unsuccessful. And just a few days later, he and his girlfriend were arrested for the events that led up to her death. So we did inadvertently bring the perpetrator to the bedside. There was no way at that time that we could have known that. So that was an interesting lesson learned.

Lisa  
Did any of the naysayers use that as an example of why this policy should not be implemented?

Nyssa  
No, because it didn't change anything. It didn't change the care that we provided for the child. It didn't change the outcome. It didn't you know, essentially, there was no difference in what would have happened. We just didn't know the circumstances that led her to be lying there on our table quite yet. One other thing that we discovered, and we kind of talked about this and alluded to it earlier, is that we needed to provide staff with some robust coping mechanisms because we talked about that raw emotion that is now standing right next to you in the room across from you, instead of down the hall behind a closed door. We built this into our culture starting with the very first interview. So one of the questions that we ask in our interview process is, "What do you do outside of nursing?" What do you do when you're not at work? And it sounds like we're asking you a very benign question, like, let's get to know you question, and it is, and that's important. We do want to get to know you. But what we really want to know is: do you have some healthy coping mechanisms that you can turn to when things get really ugly in this department or when those emotions are really raw right next to you? Do you have a gym that you can go to, or a dog that you can walk, or music that you can play, or a church family that you can turn to? And those are things that we can take note of. And when we see that you might be struggling with it, we can encourage you and remind you that these are some outlets that you have to help you cope. Along with our practice, we decided that we wanted to do a research project to ensure that our healthcare providers were feeling the same way. This was consistent with the research that showed that they felt this was a good practice to have and that it was working in our department. And so we did a replication study of something that was done in Colorado.

Lisa  
Why the replication study? Why not just like, do a new angle?

Nyssa  
The study that we repeated was one about how families were able to tolerate the practice of family presence at the bedside. And we have a culture in the south. It's called an "extreme grief reaction." And this is a very important part of our culture, and it's the way that we show grief and also love. In the south, however, it is not uncommon for family members to prostrate themselves on the ground, to syncapize, to yell or moan or be very loud when they're crying. As nurses, we are used to this behavior. We're used to seeing it in the quiet room. We're used to it, you know, when patients' families are delivered bad news, we wanted to know what it would mean if they were in the code room at the bedside. Would they still behave this way? If so, would it distract from the care of the patient? Would we need to escort them out? So it was important for us to kind of replicate this study and see if this cultural practice of extreme grief reaction would impact this practice of family presence.

Lisa  
Did it?

Nyssa  
It did not. So we do have patients who, and this is not specific to the south, I don't think when people hear bad news or when they are expressing grief, they have physical manifestations of it, so they have an asthma attack. They develop a migraine. They hyperventilate, they have hypertensive episodes, and those things were also happening, and they were happening both at the bedside or in the quiet room waiting room, whichever. In that case, if that does happen, it's the family facilitators' job to put them in a wheelchair and take them to triage so they can now be treated for their ailment, which is related to their grief. What I want to emphasize is that I believe that this should be offered to all families in code scenarios. Not everyone will take you up on it, but it should be something that is offered. There's a right way to do it and a wrong way to do it. You definitely need a facilitator, and you definitely need a written policy just for consistency. And the reason why I am sharing this with you is that I am happy to help anyone who's interested in promoting this practice in their own healthcare setting. If you email us, I can provide you with the bibliography of the research that we referenced. I can also provide you with a copy of our hospital's policy if you'd like to mirror one in your own facility, and I'm happy to help you set up and train your staff, whom you will need to do some training with before you can enact this policy.

Lisa  
So what if the policies are in place, the hospital is on board, and it's something that everyone is in agreement with? What are the barriers to actually instituting it? If it's not being widely practiced in the hospital that espouses the idea, is it just that in the midst of the coding scenario, you lack the activation energy to stop and remember that there might be family out there? Is it? What stops it from happening?

Nyssa  
So I would say there are two things. One is that you do have some people who are not familiar with the research who were opposed to it when we began this, you know, this journey, I guess, towards a policy. We had two physicians, ER physicians, who said, "absolutely not." I will never support this. I will never bring them in. We had to compromise. Although I feel all families should be offered this, we had to compromise and say that if a physician said no, that no means no. I was willing to give that up for those two physicians so that I could get everyone else the opportunity to have it. So we had to do some compromising. I was unable to convince them even with the research and the evidence. The other thing is that you really need someone or some bodies, a core group that champions this practice, because, as you said, codes get really busy. There are a lot of roles to fulfill, and there are some really important things that need to happen. And sometimes it gets lost. So you need to have a champion who remembers how important this is for families and who consistently brings it up until you develop a culture where this becomes the norm, like in the pediatric world.

Lisa  
So, Nyssa, I know that this has been something that you have lectured about, that you've been interested in for many years, and something that you've always thought was good practice, but I also know that a few years ago, something very personal happened that actually turned this into your crusade. For our listeners out there, a little recap: you've heard us talk about Michelle often.  She was our third roommate in college, but there were actually four of us, and our fourth member was Sharon. She was the fourth sister in our group. Unfortunately, Sharon died a few years ago, and you, Nyssa, were at her bedside when that happened.

Nyssa  
You know, she called me on a Sunday afternoon, and she had some chronic health conditions that she dealt with every single day. And she was not medical, so she always heard me complaining about people coming to the ER for ridiculous reasons. So one Sunday afternoon, she called me and said, "I do not feel good." I've vomited and my stomach hurts. Do I need to go to the ER? She was looking for permission to go. I was thinking in my head that you don't need to go after one episode of vomiting.  But I did the nurse thing and said, you know, on a scale of 1 to 10, 10 being the worst, being the worst, how bad is your pain? And she said, "It's like an eight." And this is someone with chronic pain who deals with pain all day, every day of her life. And so that changed my mind. An eight?! You need to go. And thank goodness that I said that because her next and last ever comment to me was that her husband made fun of me for calling you because he said Nyssa loves you. Of course, she doesn't want you to be in pain. Of course, she's going to tell you to go. And those were the last things she ever said to me. And my expectation was that she would go in and get some fluids and some pain medicine and, maybe, you know, be observed overnight, and I would talk to her in the morning. But what actually happened is that I got a call in the middle of the night that she had taken a turn and things were going very, very poorly. And so I went to her and got to her bedside, and when I did, I saw that she was on the ventilator with really high vent settings. She was maxed out on two pressors. She had no sedation going on, and her vital signs were terrible. And after about an hour or so of pumping the night shift nurse for information, I knew that this was not good and that it was not compatible with life. Several hours later, I was at the bedside. Her husband had stepped away for a brief moment, and I was at the bedside alone with her. She let go. And I actually notified the nurses and said, "You know, it's time she's, she's coding." And so I was standing at the bedside, visibly weeping and shaken, as you can imagine. And they asked me to step out, and I said, "No." And as the code team continued to arrive, and as her husband came back and stood shoulder to shoulder with me, we were both visibly emotional and crying. And again, they asked us to please step out, and at that time, I didn't have the wherewithal to say, "Look, I've done extensive research on this." And I've written a policy and I'm in the middle of a research project, and so on and so forth. But what I did say was, "Look, I'm a nurse. We're not going to get in your way, but we're not leaving. " This particular facility did not have a family presence policy, obviously. And so that seemed to satisfy them, and they let us stay. As you said, it was an experience that catalyzed this for me and turned it into a passion about how important it was for us to be able to be there. And when I teach family presence, I always tell Sharon's story, and I always do it with permission from her family. So when we decided to do this episode I contacted her family again for permission and it was granted. What was unexpected was that, shortly after that, I received a recording of her husband's story. And what's interesting about that is he and I were shoulder to shoulder, but we had two very different experiences and two very similar experiences. The other thing is that he and I had never talked about it in detail in the years that had passed since we were there. And so to hear his story he intended it for you and me, Lisa, and then for us to pass it on to our listeners, and it's quite a gift.

Lisa  
It's a very powerful story that's going to reflect on other people's experiences, but we thought it would be best and with his permission, we're going to present the entire story to you here.

Narrator  
It's a Sunday morning, and the kids are asleep. And it's just me and the computer. And I figure if I want to have my own story involved, I'd better tell it. This is what I remember. It was the weekend. That seems like a lifetime ago. But it really wasn't that many years ago. And after battling with rheumatoid arthritis and dealing with the effects of biologics and basically, chemo, seeking out little bits of medication that would allow her to take weekend trips or have the mobility to go do the things that she wanted while holding down a full-time job, recovering from surgeries, and dealing with day-to-day life and kids and a husband who periodically aggravated the crap out of her, she had a complication with her digestive system, probably due to side effects of medication and perhaps because of the medications that she was taking. And so for most of the Saturday, she spent in her recliner in pain trying to deal with what she figured was a digestive issue, but it didn't subside, and since she had had surgery about a year prior, it was getting more and more concerning to her. And I wish I had insisted that we go to the hospital sooner, but it didn't seem any more severe than many of the other episodes that she had had. So, it wasn't until the evening of Saturday that we decided, okay, this is too problematic to stay put. We just hopped in the vehicle and headed to the hospital, not really prepared for any kind of lengthy stay or anything. I figured it was just something that needed to be examined or maybe a couple of pictures needed to be taken. We weren't concerned. We got to the hospital. There were a few people ahead of us for emergency care. Not super busy. But as I guess most emergency facilities go, there were certain types of things going on that probably happen every Saturday. So it wasn't surprising that we went right back and waited a few minutes in the staging room and her pain got more severe and we had been seen by a technician who checked her stomach where she was having the pain and didn't seem too concerned. I mean, I wasn't concerned that she was in pain, and that, of course, concerned her, but other than that, there was still nothing out of the ordinary. But she started to get sick and she started to feel sick to her stomach. I believe I remember that she got something for the pain and she didn't react well to it. I want to say she even told him that particular medication tended to make her queasy. So she started to empty her stomach and the technicians seemed a bit concerned that there was bile here and there was something really wrong that needed to be dealt with. Still not really concerned. But the evening dragged on for us, and when you're in pain, of course, it seems like time slows to a crawl. Then the hours ran into midnight. I don't remember at what point I texted our friend who hosts this podcast to let her know that we were at the hospital and that Sharon wasn't feeling well. And she had some strange symptoms. And we were waiting on some diagnostics. And that's where we were. So, because we hadn't planned on staying overnight, but because it looked like it was getting worse and worse, I called my oldest and said, "Hey, can you bring a change of clothes. We didn't plan on this. " And so there were a few opportunities there and in those hours between midnight and three that our oldest child got to at least visit for a few minutes, although by that time, she was unconscious from the pain medication and just sheer exhaustion, I believe. But it wasn't until later, I guess earlier in the morning, that things really started to get concerning. Some of the tests came back and clearly what all of us thought was something mild was something much worse. And I stepped away for a moment and came back to discover that she was no longer where she was supposed to be. They wheeled her away and explained to me that she had severe sepsis and had been taken to the intensive care unit. This was all quite a whirlwind for me, and I didn't really know what all this meant, but I was still pretty unconcerned. Because we had been through so much already, perhaps, I believed that there was an overabundance of caution. I was a bit miffed. I will admit, I thought that we had been in the emergency room for too long. And I have not been very happy with some of the expediency, but I know that other things take precedent. Of course, as a family member of someone in pain, I'm constantly advocating Hey, can you please have a look here? Something doesn't seem right. I didn't really feel like my concerns were being answered, and you know, having had two children at the same hospital and having been treated as the nervous dad and being sidelined for whatever reason, because you want the experts to take care of things and patients and their families defer to those choices and those that they expect that the people that they have trusted with their lives now what they're doing well. We moved into the new location, which was a spacious area with intensive care. And there was a bright little place for me to set off to the side by the window, a little lounge chair that I could sleep in if I needed to. I dozed a bit, and our friend arrived at about five. She had a nurse's schedule and could be awake at five o'clock and travel two hours to visit. And it did my heart a world of good to know that someone that I trusted more than life itself would be there. So she was unconscious, and our best friend, her sister by choice, was in the room. So uh, I took the opportunity to gather my wits about me, and I guess I was beginning to really see that there was something seriously wrong. I went to the cafeteria, which was on the other end of the campus, to get a bowl of oatmeal and some juice. I thought, "I'll only be gone for a few minutes." She's not conscious. She won't miss me. And I'm hungry. So off I went. I barely got seated. When I got a text message that said, "She's taken a turn for the worse." It's almost like she knows you're not here. Come back quickly. I think I had one bite and I left it there. I got back to the room to find a scene that I didn't quite understand. There were so many people in that room. They're all trying to save her. I guess the purpose of this podcast is to explain how important it is to have family there, even though it might be inconvenient. I can tell you that watching how hard those students and those nurses and those doctors worked to save her life helped me deal with the anger that comes with loss. Because, of course, after a death such as this, you wonder, you know, could I have done more? I could have done more, and I didn't want to lash out. But the memory of being at the bedside and seeing all those angels, taking turns, trying to do compression to bring life back into her. Many minutes have passed since having someone explain to me that at this point, there hasn't been enough oxygen to the brain, and even if she recovers, she won't be the same. Having that logic explained to me at a time that is highly emotional is a gift. And then understanding that at some point, after minutes and minutes and minutes of compressions, it just begins to look like violence on a corpse and to feel like the last heat of life. That means the body will slowly dissipate it. The gift of being there is perhaps one of the greatest parts that I have to go back to knowing she wasn't alone, that she was surrounded by friends and she was surrounded by experts who did everything they could save her life. I appreciate what nursing is. It truly is a heroic job and one from which I have been such a beneficiary. That's my story.

Nyssa  
We typically ask you as your call to action to rate us on iTunes or leave a review. This episode is different for us and our call to action to you this time is to ask if you know someone who is a change agent in your department, or you know someone who is in leadership, or maybe you have a precepting or new grad that needs to be aware of this policy, pass this episode along, share it with someone, bring this policy to your facility and let us help you do that.

Lisa  
And if you have any experience yourself, if you've been in the home, but when someone you love has passed away, and you were either at the bedside or were unable to be at the bedside, would you have preferred to be there now that you've heard this episode? Do you feel differently about it? Do you feel strongly against it? We really want to hear your perspective. This is something we hope will start a conversation. Since you've been teaching it, Nyssa, you've convinced me, so we thank everyone for listening, and we will sign off with this and see you next time.