Intake

Parents who get a prenatal diagnosis of CHD have time to read. Often they have surfed the Internet, and some parents can become well educated about their child’s condition. In fact, they may be more familiar (though less educated) with the diagnosis, treatment options, and outcomes than some of the care providers in the ICU. In many cases they have had time to discuss concerns with their cardiologist and surgeon before the baby’s birth. Compared to families without a prenatal diagnosis, they are generally better prepared for the hospitalization, except for the fact that all the information and education available is not really a preparation for the reality of the experience. Nothing can prepare a family for that. So, expect that even the most educated, prepared, and intelligent parents will be in shock—a bit numbed, overwhelmed, and scared. That is the best scenario a care provider can hope for when first meeting a family member. For parents who are not prepared by prenatal conversations and for whom the diagnosis of CHD is a surprise, expect to get them early in the cycle of shock. Regardless, it is essential for the cardiac care team to know that in addition to treating a baby with CHD, they will also need to learn how to connect with the family, because no matter how good the care team is, they will need to cultivate a relationship with the family that engenders trust, collaboration, and transparency. This chapter will describe ways that health care professionals, often untrained in these relational matters, can become a better resource and support for families in this regard.

The first thing that the cardiac care team can do is simply connect with the family members. Let them know who the members of the team are, what roles they will play in the child’s care, and what the ICU policies are regarding visitation, rounds, and organized family conferences. Although this is often done by the nursing staff, it is valuable for the ICU physician, after the baby has been stabilized, to meet with the family and provide them with an update on their child’s condition, as well as a general agenda for what the team sees transpiring over the ensuing 24 to 36 hours.

Our initial advice to the care team members here is to take a breath, slow down, and center themselves so that they can engage with parents in a genuine and connecting manner. Although this comes easier for some than for others, it is very reassuring to families to know that they are in an environment that appreciates that their lives at that moment in time are no longer “normal” and that they have educated and caring “partners” in the experience. Pay attention to the family dynamics, because they are different for all families. As discussed in Chapter 9 , try to recognize your own implicit biases and the stories that you might be telling yourself about the family based on unconscious stereotyping. Listening takes an enormous amount of energy, discipline, and attention. But good, careful listening is critical. If you approach the family in the mode of “telling” as opposed to connecting, they are liable to tune out and not take in the full conversation. It is vital to first take in to account the family’s own emotional, intellectual/educational, and resourced state. Some families may simply want overarching reassurances without the need (at this time) for a lot of details. Others may want to know as much detailed information as possible. Do not beat families to a pulp with data if they are not in a space to hear it, but be prepared to answer insightful questions with accurate data regarding your own experience, your institution’s experience, and the regional/national experience with patients who have similar problems. Do your homework, be prepared, and more importantly, connect. At the initial intake, it may be sufficient to simply connect with families and let them know that you will be a resource to them all along the way.

Health care providers are trained to “fix” things. They are trained to “know” and to “act.” There will be numerous opportunities for you to do this during the child’s hospital course. However, listening does not require action. It does not require “knowing.” It requires that you simply become a “witness,” a calm container that the family can simply fill with worry and concern that you will willingly hold for them. That is much more difficult than determining what pharmacologic agent to use to treat hypotension. Pay attention to nonverbal cues—facial expressions, body position, and dynamics between mother and father (and other family members)—to determine how receptive they are to information or to “who’s in charge” or whether there are some important tensions that need to be communicated to the rest of the health care team. Most importantly, simply listening to the family, connecting with them in a meaningful way, and acknowledging their fears and anxieties (without having to say or do anything to make those fears go away—because they will not—simply providing compassionate understanding that they exist) goes a long way to establishing trust—and you will need that as the hospitalization continues.

Be aware, too, that the family is likely undergoing stress beyond the diagnosis of the congenital heart defect. They may have financial concerns. Treatment of a congenital heart defect is not planned in most people’s budgets. They may have guilt (“What did I do, or not do, to cause this?”). Sometimes, family members overtly blame one another. This is simply a manifestation of great stress and shame. You can simply be a witness to it and let them know that they did not cause this. There may be issues relating to the care of other family members such as siblings who will still need to be cared for at home. There may be stress (and guilt) related to the father needing to still go to work (meaning he will be absent sometimes—and how is this perceived by the mother and/or care team). Mothers may have postpartum issues (and may even not be present for the initial intake—in which case it is very valuable for someone from the team to call them and keep them informed). All family members may have the stress of the situation exacerbated by sleep deprivation or inconsistent eating. Asking a family if they need any water or food is a nice consideration.

Use simple language, and repeat yourself. From our own experiences, families are not totally attentive during the initial meetings. They have so many distractors in their lives, and so much of what is happening is simply new and overwhelming. You may think you have presented a very organized, comprehensive, and accurate explanation of their child’s problems and upcoming treatment plans, only to learn that they have hardly “heard” or processed a word you have said. They may simply want reassurance that they are in a good place and they will have skilled people caring for their child.

Families are also trying to process a lot of fears. They have grief from the loss of the dream of having a healthy child. They are now scared that their child might die or be disabled. They know there is nothing you can say to guarantee that this will not be the case. If there were, we would tell you what to say. If you can help reassure them that they are in a safe and caring environment, you can initiate the development of the relationship that you will need to have with each other to cultivate the kind of shared decision making that helps empower the family to be an advocate for their child’s care and that will likely contribute to overall best outcomes.

It may be that the patient first comes to the ICU following a surgical procedure, and this is the first time many of the ICU staff have met the family. This underscores how helpful it is, whenever possible (such as during a prenatal visit when there is a prenatal diagnosis), to have the family “tour” the ICU and hopefully briefly meet some of the staff (nurses and physicians). Even when different nurses and physicians are in the ICU when the family tours, the family can establish an initial sense of safety and trust if the ICU staff takes a few moments to engage with them and connect to them. When their child arrives in the ICU following surgery, most of what was described earlier cascades over the family—fear, anxiety, guilt. They see their child with tubes and lines and often looking critically ill, and they have lost all control. They are vulnerable. A pre meeting and tour can be extremely valuable.

Settling In

After the initial intake the child will now be in the ICU getting stabilized, readied for treatment, or recovering from a procedure. This might be the time to begin transforming the family into members of the medical team. If the ICU has an open visitation policy (most ICUs today have open visitation), the family will likely be around and quickly adapting to the ICU culture. They will learn when rounds occur, and they will be developing relationships. It is helpful for the family to have the same nurse as much as possible, and most ICUs try to provide this. From a family perspective, the nurse becomes a valuable, knowledgeable liaison and partner who knows the “language” and who will advocate for them. In today’s care models, families are (or should be) invited to participate in formal rounds, meaning it is helpful for rounds to occur at the same time each day or for the family to be informed when this schedule might be altered. It is easy to imagine how overwhelming it can be for parents to be confronted with a large group of medical providers wheeling computers, speaking in medical jargon, and rattling off numbers and phrases they do not understand. For rounds to be useful for family members, it is essential that time is taken to summarize and explain, and that the families leave rounds with a true understanding of the assessment and plan for the day. Additionally, it may not be possible for family members to be present at bedside rounds because these occur during working hours. Parents need clear communication—both the absence of medical jargon and an explanation in layman’s terms afterwards—as well as transparency from their providers, even if the information that is to be provided is perceived as bad news. Parents also frequently ask for preparation from the team and for anything they can do to help inform themselves. They expect the team members on rounds to know all of the details about their child and often cite team turnover, with new, less preferred or informed team members, as a frustration. Additionally, families often express that they would like the opportunity to prepare themselves for rounds, with some suggesting consistent daily rounding time and a handout or protocol that defines the purpose of rounds and roles of the participating staff members, as well as the expectations for parent participation.

This means that today’s health care professionals need to learn how to round in a way that communicates information and allows for vital information to come forward and to make plans in a way that involves the family and that represents the functionality of the team. In particular, at the end of the rounding process, please ask the family if they have questions. Did they understand what was said? Do they feel that their concerns have been addressed? It is helpful to ask them what they “heard” and what they are expecting to see happen in the next day. It is damaging to trust for the rounding team to rush over to the next patient without connecting with and engaging with the family. If the family’s needs are considerable and require more time than the rounding team has, it is reasonable either to leave a team member behind to address these or to tell the family that you will circle back to them within a reasonably short time frame. (And make it a short time frame because what the family is really saying is, “We’re anxious and worried or confused and just need to have someone talk with us.”) The longer you make them sit with worry, anxiety, and concern or confusion, the more you erode trust in a very vulnerable population.

It is important for the person directing rounds to demonstrate how the team functions with adversity or stress—this is the time to model composure. It is extremely damaging to ask questions of team members that show how little they know and how smart the rounding attending is—this simply creates shame in the person who does not know the answer and consternation for the family that their care providers do not know what they need to in order to care for their child. It is equally damaging to be unprofessional (irrelevant joking—particularly sarcasm, making disparaging comments about other team members/consultants), or to be dismissive of the contributions of other team members. There is a lot written in leadership circles about how to create a resonant environment that engenders a feeling of safety and trust (see Chapter 1 ), and it is critical for team leaders to adapt to this changing culture. When a team leader needs to say direct things to team members that might not be well perceived by the family, this should be done in a more private setting so as not to diminish or devalue critical personnel in the eyes of the family. If the ICU leader creates a collaborative, inviting, and supportive/productive rounding culture, the family will feel that much more confident that they are in good hands. It is not helpful to anyone, particularly to parents and to other staff, for the physicians to demean each other (such as the surgeons criticizing the intensivists, or the intensivists demeaning the cardiologists).

Rounding is also a time for other important members of the ICU team such as social workers, chaplains, care navigators, or concierges to identify specific needs for their services, and they can use these rounds to seize upon these windows into the family to circle back and provide needed services. Be cognizant not just to what the family says, but also to what they do not say. Be present and mindful.

As the child proceeds through his or her care, a number of issues might present, and these need to be addressed. Families have a huge need for information. Some simply want to know that everything is okay. Others want details. Disruptions in expectations, such as a complication or poor response to therapy, can lead to an increase in anxiety, worry, and fear. This might be manifested in a variety of ways, and it is helpful for the care team to be attuned to this. Often the physicians are informed by the nursing staff that the family has several concerns or desires more communication, and a multidisciplinary care conference is scheduled. The IOM 2001 recommendations regarding shared decision making led to the American College of Critical Care Medicine (2004–2005) task force’s recommendation that family conferences occur regularly. An additional recommendation was that family conferences including all pertinent members of the multidisciplinary team happen within 24 to 48 hours of ICU admission and recur “as dictated by the condition of the patient.” These conferences are very important to families. This is the time that families will be attentive to information and data, so come to these conferences prepared.

Numerous studies have addressed family conferences in the ICU, although a large proportion has focused on discussions regarding end-of-life decision making. Data on family conferences not exclusively involving end-of-life care are less common. One study found that within 24 hours of the occurrence of a conference during which a treatment was discussed, a treatment decision was made 42% of the time. When discussions involving withholding or withdrawing life-sustaining therapies occurred, a decision was made (again within 24 hours) 58% of the time. Meetings held in conference rooms were more likely to involve both parents and “clinical support members.” Disturbingly, though perhaps not unexpectedly given physician turnover (often, attending physicians switch weekly) and the fact that many ICUs follow a shift-work model, the majority of family conferences involved an ICU attending physician who did not have a previously established relationship with the child’s parents.

A 2010 study interviewed 122 English-speaking parents of 96 children who were not at risk for imminent death admitted for at least 48 hours to a single, university-based ICU. Overwhelmingly, the parents cited communication as most important in building trust between themselves and health care providers. Honesty, compassion, explanations for care decisions, including parents in decision making, and cohesiveness among the health care team were noted as parental needs in communication from their providers. When questioned on barriers to communication, parents in this study most often stated that they were fearful of expressing concerns so as not to be perceived negatively by the health care team. Barriers to building trust included lack of continuity of care among providers and lack of understanding of different provider roles.

There is a difference between being “involved” with the child’s care and being “engaged” with the family. A family conference helps create the engagement. It not only clarifies communication (for both the medical staff and the family), but it creates the process for shared decision making while honoring the family’s culture, needs, hopes, and expectations. Family conferences empower the family to advocate for their child and become members of the health care team. The engagement that emanates provides the family with resources (information, dialogue, a sense of being heard and empowered) to help them collaborate in the process of caring for their child. These conferences also help the health care team learn what resources the family might need, including support for their physical and emotional needs, financial support, theological guidance, social networking, information or research pertinent to their child’s convalescence, or even simply a chance to talk. Do not undervalue the need of the family, especially during prolonged hospitalizations, to simply have a chance to talk, vent, or ask questions to a receptive group of multidisciplinary team members. Creating frequent, short, focused meetings is a way to indicate to the family that their concerns matter. Performed artfully, these offer opportunities to teach the family, providing them with information tailored as much as possible to the individual learner. These considerations in teaching need to include race, ethnicity, educational background, stress level (considering the current status of the child), and even learning style. As the team becomes familiar with the family, these meetings can become a wonderful source of information sharing that will help the family better understand what the health care team is trying to accomplish.

Often family conferences are used to convey medical information, make recommendations, and/or make treatment decisions. Generally the medical team members enter these conferences with an agenda that has been shared among the provider participants. It is less common for that agenda to be discussed in advance with the family members attending the conference. There are recommendations in the literature regarding structure and organization of family conferences as well as location (conference room versus bedside) but a paucity of literature regarding families’ perceptions and needs.

We advocate for guided participation for families, including joint agendas made in advance. Depending on the circumstance, families may have well-organized thoughts and questions, or they may require assistance in verbalizing their priorities for the conference. In either situation, the medical team, as well as liaisons such as social workers, chaplains, and patient advocates, as appropriate, can help family members formulate a plan and manage expectations, thus promoting a more productive meeting for all involved.

Finally, it is incumbent upon the health care team to meet before these conferences so that they can clear up any disagreements and present a unified, agreed-upon message to the family. Disagreements between team members should not be worked out in front of the family—nothing can do more to erode trust and increase anxiety. It is also valuable for the health care team professionals to exhibit humility and compassion as opposed to arrogance and disdain. This includes openness to differences in culture and beliefs, and it is critical that health care team members have the capacity to try and understand and accept the perspectives and beliefs of others, even when they are (especially when they are) different from their own.