Table 5.
Role responsibilities and illustrative quotes
| Role Responsibilities | Illustrative Quotes |
|---|---|
| Family Supporter | |
| Provides nonjudgmental emotional support through conversation, listening, touch and physical presence | “We [social workers and child life specialists] are neutral and are their sounding boards in the process.” Social worker “They told us that and they supported our decision, and … they were really at our disposal I think for that day, so I’m not sure you can ask for anything more.” Parent |
| Provides spiritual support through conversation, facilitating meetings with appropriate spiritual advisors and facilitating engagement in spiritual rituals | “Spiritual issues and how God is involved and active in this situation … And so, I think the chaplain helps sort out and talk about some of those issues.” Chaplain “It was really important to us to have him baptized there and so everybody was very professional and, and giving us that time in -- you know to do that.” Parent |
| Addresses physical and environmental needs of family (e.g. food, space to sleep, quiet area) | “[My wife] was a month off giving a 40 hour labor. … she was still nursing you know and all these things were going on. So you know they’re like well ‘let’s not have someone else in the hospital’ kind of conversations.” Parent “And I remember being angry having experienced what we just experienced, but they wouldn’t take care of [my husband]. They wouldn’t give him a place to go and just fall apart, which is what he needed.” Parent |
| Fosters connectedness or relatedness between HCPs with parents/patients and between parents/patients with others | “We had a sign. We had a big billboard, … And so even the people that were doing the ECMO and the doctors and everyone who came to visit, they would write a little message to her. So that was really nice.” Parent “I mean, you know even something like being able to say to them “listen, would you like to talk to somebody else that’s been through this, another parent that we might be able to get to come down and talk to you?” Parent |
| Provides information support by helping family understand the medical information presented | “I think we should be there to translate what the doctor said, to soothe them and support them and just let them vent and explain things gently” Nurse “I guess just help reiterating the information, giving it to them in a way that’s like understandable for both of them.” Nurse |
| Parent Advocate | |
| Relays information about the parents to HCPs (e.g. parents’ perspectives, views, goals, religious/spiritual alignment, state of medical knowledge, communication preferences, education, psychosocial issues) | “And they [the parents] say ‘we get it but we, we can’t just keep talking about it. … please tell the docs … that we understand it. Tell them to stop coming in. … this is what we need to do’” Chaplain “I think that’s often our best role is before medical professionals go in and talk to them is helping educate them on history of the family or cognitive functioning of the family or family dynamics and so using us as a, you know, a resource to help have more effective conversations.” Social worker |
| Facilitates meetings between HCPs and parents in order to help families express their views and needs and to actively participate in care and decision making | “She said ‘if I was in my country she said he would not be taken care of, he would be allowed to die.’ … I said ‘we can do that here too’ and I asked [the attending] to come in and talk to her.” Nurse “We, as nurses, will quite often advocate for that, say hey, you know, we’ve got a lot of services involved, the family isn’t here during rounds, we need to set something up and sit down in one room and they can get their questions answered and everybody’s going to be on the same page.” Nurse |
| Information Giver | |
| Discusses the medical situation, describes changes and updates to clinical status and prognosticates | “I’ve seen some, some excellent examples of, of communication by a couple of our fellows with regards to updating families on where things are at and that in a sense saying things are not looking good and this is what we’ve done.” Nurse “That if the team feels like things are headed in a bad direction, I think it’s inappropriate for there to be a lag time between them feeling that or seeing that, or diagnosing that and it being communicated to the family.” Nurse |
| Presents decisions to parents; describes available options; gives recommendations | “…often the families become aware that a decision is about to happen through support staff. Through the nurses at the bedside, day in and day out and that nurse may have already started talking about you know ‘the docs might ask you about this’ or ‘the docs may ask you about that.’” Attending “Before the surgical team was doing their rounds … we asked what the options were for continuing treatment and, you know, they talked about our, our options. That if she went into arrest, you know, they could try the compressions or the, the, you know, other attempts to revive her.” Parent” |
| Clarifies parents’ understanding by repeating information or answering questions | “And as wonderful as our provider team is, I think sometimes we still fall short of being able to really explain things in an understandable manner in non-technical terms to families. I always felt my role, as the bedside nurse was to make sure when we were done that they understood everything.” PNP “So they did explain to us everything that was going on and you know and they allowed us to participate in the rounds in the morning and ask questions when they were done.” Parent |
| General care coordinator | |
| Keeps HCPs from different services and different disciplines updated | “And I think families really resent it when they don’t, when they’re the ones that tell a physician what the other team has said.” Social worker “So I find that, you know, one person’s talking to them about it and then other, the other persons aren’t included and then nobody knows what’s going on or how to talk to them. So I think hope, trying to make it more central.” Social worker |
| Coordinates the communication of information from HCPs to parents/families | “But I feel like they all go in there with a parent, but then one team says one thing, the other team says another thing. And then they kind of banter back and forth,…why they don’t meet beforehand and why aren’t they on the same page before they even enter a room with a family?” Nurse “We just kind of took everything people would say with a grain of salt because we knew everybody sees things with a different attitude. Some people see things optimistically and some see them pessimistically, but it seemed like there was all the same facts coming from all of them.” Parent |
| Coordinates interactions between HCPs and families | “Before all these various groups come to the bedside and share tidbits of information on which direction things are going I think it would be better to have a coordinated effort where it’s one individual or one group of people that is communicating the information to the family.” Nurse “We need to coordinate not just a medical team member coming back to the bedside, but social work, or a pastor, or something like that to help provide some emotional support.” Nurse |
| Involves point people when appropriate | “When somebody who’s from a, another service who doesn’t have a relationship, … walks in and gives a piece of information that is a blow to the family, and none of the staff that have … a relationship [with the family] are present or sometimes don’t even know that this piece of information was being given. …That happens too often.” Chaplain “And it has a lot to do with how much the team stops and thinks and says oh, well can I get your child life person from oncology down to say ‘hi’.” Social worker |
| Decision Maker | |
| Makes the decision or defines a plan | “You have the parents who are in the active role, who make the decision. Either they come to us with the decision or they are able to make the decision after they’re given their options. … And then there’s the passive deciders. … those people who say we’ll do whatever you recommend.” PNP “You’ve come from a team that’s been telling you when you’re going to eat and when you’re going to sleep … and then at the end of life we sort of, the, the attending physicians tend to say gosh, we don’t know any better than you do. What do you want to do? And it’s a huge role reversal.” Social worker “I still think that I removed that breathing tube. The doctor might have removed it, but I did. Physically the doctor, but emotionally I did, and it hurts.” Parent |
| Influences and/or directs the choice of primary decision maker | “you walk in that room either intending to tell them what’s happening next, intending to get their opinion about what to do next or intending to educate them so that they eventually agree with what your thought processes are. It is rare that you walk in a room with sort of fifty-fifty on the table and ask them to make a [decision] … You go in the room with a loaded deck …” Attending “And I think the parents should have a right to say no, I don’t want CRRT and I want my child to be made comfortable and I don’t want the drips you know and I think this should be a choice to do that. But I find a lot, a lot of times here we don’t give them that choice.” Nurse |
| End-of-life care coordinator | |
| Prepares family for dying period | “Child life preps, so to speak, the siblings if they are going to be involved in that and in the room during withdrawal or throughout the process and stuff.” Nurse “The PICU people came in and said, ‘okay, here’s what’s going to happen.’” You know, and they just gave us a checklist of what we’ll see and what he’ll do.” Parent |
| Coordinates supportive environmental changes | “And yes rooms might be crowded but I think they should have designated areas where, not to die areas, but, you know, if it gets serious, you know, it should be quiet. It should be corded off” Parent “And then they let us stay as long as we wanted. … They brought in food. … They, they also provided another room for my family to all go to and sit.” Parent |
| Coordinates visitors: family, friends, HCPs, religious figures | “So I think if, if that list [of family and friends] was prepared and you could have a social worker or somebody kind of call and inform these people what’s going on.” Parent “Nurses that were off that day showed up and all stood there and waited with us.” Parent |
| Coordinates end-of-life memory making activities and experiences by offering to help create mementos or allow time and physical interaction with the patient | “She was very compassionate. And you know she came in and asked me if I want to do footprints and handprints and you know and things you know I wouldn’t ever think to do. … And I said ‘would you mind if you left and we did this alone’ and she’s like ‘absolutely not, if you need anything I’m right outside’ you know, and she left.” Parent “There’s parents lots of times that want to hold their child who’s intubated. And they know that the child is dying, … So, sometimes those roles of figuring out when parents can step in and say to the medical team you know I want to do this regardless.” Chaplain |
| Addresses medical issues related to the patient: autopsy, coroner, organ donation | “They gave us the option for an autopsy. … If there was anything to be learned for anybody else’s sake that we wanted to make some meaning out of her death.” Parent “If somebody from the coroner’s office or somebody from the hospital who knows the drill, okay, could have just said, … ‘You know when this is all over, they’re going to take him. This is the law.’” Parent |
| Point Person | |
| Foster a trusting relationship with family through consistency and rapport building | “She’s one of the clergy, faith people here, and she was wonderful and would meet with me any time. … I definitely did bond with [that chaplain].” Parent “At that point [Dr. X] was kind of our go to. She had stuck with us. She was the one that was resuscitating her throughout the night. She slept there and continued to get up to help and, you know, but she kind of brought it [the decision] to us.” Parent “I think that that night I remember it was a little difficult because there was nobody on that we had any relationship with, that had been there during the week that I recall, you know.” Parent “I’d love to have had the same nurse or nurses. … Give us some constants. There’s nothing better than constants...” Parent |
Title of speaker is noted after the quote
Nurse signifies PICU bedside nurse
Abbreviations: PNP, pediatric nurse practitioner