Practical Aspects of Palliative Care Communication

13 Practical Aspects of Palliative Care Communication

Lindsay Ragsdale, Tessie October, and Caitlin Scanlon

The right word may be effective, but no word was ever as effective as a rightly timed pause.

mark twain⁵¹

Effective communication among children, their families, and the healthcare team is woven into the fabric of pediatric palliative care (PPC). PPC clinicians balance communication needs of the family with those of the child, as well as serving as interpreters of complex clinical information that the primary team has offered. Coordinating communication among multiple clinicians can be quite complex and requires a delicate balance between providing the that information families need to make decisions with the emotional support necessary for them to feel comforted in those decisions.¹ Adding to this complexity is the need to adapt the mode of communication to “match” the developmental age and capacity of the child, the dynamics of the family, and relevant cultural and religious dimensions. Balancing these “moving parts” requires skill. Communication is a learned skill that requires listening, openness, flexibility, and deliberate practice to achieve mastery. In this chapter we explore the importance of communication and provide useful tools to tackle these conversations empathetically. We also delve into communication about goals of care, prognosis, and managing hope. Clinicians can utilize these practical frameworks to improve communication and establish therapeutic alliances with patients and their families.

What Is Effective Communication?

Effective communication is not defined solely by the words one uses; a successful communication event considers the context, timing, and even the absence of speech.² It requires a dialogue, an active passing of the baton where one speaker truly listens and responds to what is said and what is implied. It demands that the clinician actively track the conversation, decrypting the emotion behind the patient or family’s question to determine if it is a cognitive inquiry or an emotional plea.³ Communication in PPC, both verbal and nonverbal, is about establishing human and caring connections among a child, family, and healthcare team. The transmission of information, while essential, is by no means the only role of effective communication. The communication encounter can also serve as the foundation for a relationship that unfolds over time. The PPC clinician asks questions that provide the opportunity to learn about the child and family: who they are as people, their beliefs and sources of support, the meaning of the illness in their lives, their needs, their goals, their hopes, and their worries. Clinicians gather this information to ensure that recommendations are tailored to reflect a family’s hopes and values. Clinicians who approach communication encounters with a sincere desire to listen and get to know the child and family are likely to be most successful in gathering important information.

Key concepts in effective communication in PPC are vulnerability and empathy. PPC clinicians are meeting patients and families at their most vulnerable time—when they are receiving a new, life-altering diagnosis; suffering through a painful experience; or looking toward a future that is uncertain or shortened. To communicate with a family living this experience requires the clinician to attempt to “leave the agenda at the door” and let the patient and family direct the path of the conversation. This shifting of the power dynamic can feel unsettling to clinicians, but it can also be rewarding. The patient and family are more likely to reveal their fears and worries when given the opportunity and some measure of control. At other times, the skilled clinician will need to gently probe and explore to guide patients and families walk down an uncertain path. Knowing which approach is warranted demands that the clinician rely on patience, empathy, and flexibility. As with any skill, mastery requires knowledge, feedback, and deliberate practice. Fortunately, as the field has evolved, there are some tools to help build the communication skill set.

Palliative Care Mission

Communicating about PPC to patients and their families should emphasize the ways that a palliative interdisciplinary team can provide an extra layer of support and address quality of life issues. At times the introduction of a specialty PPC team can be met with trepidation because many families and medical providers believe PPC is synonymous with end-of-life and/or hospice care. The first introduction of a PPC team should include clarifying the mission of PPC and address the potential misconceptions the patient and family may have. It may be useful to address the similarities and differences of PPC and hospice care up front. This initial conversation can highlight that PPC is woven into care of patients with serious illness all along the illness journey. Early introduction of PPC allows for more time to understand the patient and family’s goals to optimize quality of life during treatment. Ensuring that patients and families have a clear idea of the purpose of PPC can set the stage for future honest conversations about their values and goals. Building a relationship based on mutual trust begins with a clear introduction to the meaning of palliative care.

Building Trust

Building trust with patients and families at the most vulnerable time of their life encompasses not only verbal, but nonverbal communication as well. When patients feel as though their team is both physically and emotionally present, they can begin to experience the sense of trust necessary for exploring end-of-life wishes.⁴ Understanding which decisions are most important to families and engaging in shared decision-making can lead to better outcomes for them in the future. Families value empathic, supportive relationships with staff members throughout the illness course. Teams can deepen trust by providing families with the necessary information to make informed decisions about the things they can control—amid many which they cannot. The team thus empowers families to decide what constitutes the right choices for their child as well as share concerns and worries.⁵^,⁶^,⁷^,⁸^,⁹^,¹⁰

Discovering Preference and Values

Delivering medical care that aligns with a patient and family’s goals and values is what health systems strive to accomplish; however, the logistics of developing such plans can be challenging.¹¹ A shared decision-making model of care involves elucidating goals from the patient and family and melding them with recommendations and guidance from the medical team. The first component of this model involves assessing patient and family preferences, needs, and values.¹² A PPC interdisciplinary team can help to clarify these values and goals by exploring the patient and family’s understanding of the illness, spiritual and cultural beliefs, social context, economic support, definition of good quality of life, hopes, and worries (please see Chapter 11, “Team Relationships,” for a more in-depth analysis on team roles and functions, challenges, and more). These conversations can vary in duration and intensity and must be approached with humility, curiosity, and empathy. Attempting to understand the holistic context of a patient’s background can help to hone the medical care. To approach these contextual issues, a provider can use queries that are open and nonjudgmental. For example, taking a spiritual assessment should avoid assumptions that every person has a spiritual belief or attends religious services. Asking about spiritual beliefs could be approached with a question such as, “Do you have spiritual or religious beliefs that are important to you?” This question avoids judgement in the language used and conveys honest curiosity about the patient’s life. Table 13.1 outlines questions that can be helpful to explore the many facets that can inform a patient’s goals and values. By viewing the patient “beyond” just a medical diagnosis, the PPC team acknowledges that each individual has impact on—and is impacted by—the many people and systems with which they interact.

Table 13.1 Questions to explore individual goals and values

Getting to know the child and family	Can you tell me about your child as a person? Can you describe what your child is like when feeling well outside of the hospital? How did you choose your baby’s name? (for infants) Can you tell me about your family?
Spiritual context	Do you have spiritual faith or religious beliefs that are important to you? Would you share with me what gives you strength right now? What gives you strength to get through each day?
Cultural context	Are there beliefs about medicine or science that you grew up with? Are there family rituals or beliefs that are important to you?
Social context	Who do you look to in your life for support at this time? When there are medical decisions to discuss, who do you choose to discuss the options with? How are you managing day to day? How are you coping with this admission? What kind of self-care activities help you manage stress? Sometimes, in an effort to “protect” their parents, children may not share all their worries with them. Are there other trusted adults in your child’s life who they may confide in in addition to you?
Understanding illness	What do you understand about what is happening to your child medically? What has the medical team told you about your child’s illness? What is a good or bad day like for your child? Do you feel that your child has been experiencing more “good days” or more “difficult days” lately? How do you prefer to receive medical information? It is common for families to use internet resources to obtain extra information; have you found any that have been helpful to you? Have you had experience with medical care before or had sick loved ones?
Hopes and fears	What are your biggest hopes and worries? What do you worry the most about happening in the future? What do you think the medical team worries about?
Life goals	What do you see for your child in the future? What does your child want to do when they grow up? What are the things your child and family are hoping to accomplish in the coming days/months/etc.? Anything tzhat you were hoping to accomplish? Does your family have any upcoming travel plans?
Quality of life	What does the expression quality of life mean to you? What does your child enjoy doing the most? What makes your child happy? How does your child show you that they are suffering or in pain? Are there things that would be a bad quality of life for your child?

Clarifying a family’s nuanced values and beliefs is critical preparation for exploring how these thought patterns and lived experiences will affect future decision-making.⁸ Understanding aspects of a family’s culture can most efficiently be achieved through an attitude of curiosity and direct inquiry.¹³ Culture is not simply one part of a family’s life, but rather all of the pieces encompassed in their lives.⁸ Cultural aspects will impact who the family prefers to receive important information and who they look to for assistance in decisions, including legal decisional authority. Clarifying the identity of the decision-makers early in the illness trajectory can prevent confusion at critical times. When interpersonal conflicts among family members impact their ability to make decisions in the best interest of the child, the care team may need to step in to assist.¹⁴

The staff helped me a lot by explaining and answering questions and supporting me. As a parent I want to know everything. The team asked me how I wanted to receive information and then they practiced what they preached. It eased my stress when I had all the information. (Mother of a critically ill child)

The endeavor to find out more about a patient and family includes topics such as the unfairness of children having illness, parental guilt, worries about truth-telling, sibling relationships, school disruption, and changes in the expectation for child’s future. These conversations will be different depending on the age and developmental stage of the patient and involve different contexts from prenatal to young adult patients. For example, parents with an imperiled pregnancy or a prenatal diagnosis of a serious condition face unique challenges while trying to make plans and decisions for an unborn baby. Shared decision-making in these perinatal cases should acknowledge the baby as a meaningful part of the family unit, and decisions should be approached with respect and empathy.¹⁵ Providers can use the baby’s name (if already given) and acknowledge the emotional nature of the discussions. Families of older children may want to talk about the child’s personality and understanding of illness. Engaging each patient and family with openness and flexibility can help to uncover their preferences, beliefs, and values. The goal of these discussions is to create a more complete depiction of the patient and family in order to guide discussion of their preferences and goals of care. Combining this holistic picture of a patient and family with the medical recommendations provides an optimal alignment for person-centered care.

PPC teams can clarify goals with patients and families and then amplify and advocate for them during medical team discussions. PPC teams can also provide the context for the reasons behind a family’s preferences. This information may decrease provider distress in challenging situations when the medical team and family have different ideas about what is in the child’s best interest.¹⁶ By highlighting the family’s values that determine their decisions, the PPC team can facilitate more constructive and less adversarial conversations.¹⁷ (See Chapter 16, “Resolving Conflicts.”)

Family Reflection

Our son Anthony has had quite a journey with short gut syndrome over the past few years. The majority of that time has been at the Children’s Hospital. To say this has been a difficult voyage would be a gross understatement. When a child is admitted into a hospital for critical illness and an extended stay, it is not only the patient along for the ride. The family members are passengers as well, not to mention trying to keep a semblance of normality in the home life that still must continue. The doctors and nurses, especially in the pediatric intensive care unit (PICU) were fantastic in their communication with us during our stay. What we didn’t realize is that the hospital offered an advocate for the family on top of the great care for the patient.

From the moment we met the palliative team, we were blown away by how caring and genuine they are. They have mastered one of the most underrated techniques in this life: talking to someone and not just talking at them. The holistic approach to making sure we were doing all right was unexpected, but certainly welcomed. The palliative physician was able to elicit responses from my wife that no one else had because she was masterful at making her feel comfortable in a situation that is not the easiest to block out the anxiety. The nurse practitioner and the social worker have been phenomenal in their duties as well. I won’t begin to list all of the kind things they have done, but the team has really done leg work that we could not during these events. The team helped us paint an overall picture of our family situation, and they work tirelessly to fill in the gaps where we need it most. The best part is they’re able to sometimes just come in and talk to us. As parents, you get to hear a lot of reports about your child’s health and the overall medical outlook. Sometimes it’s nice when someone comes in and can talk to each of us about anything other than just the same cold hard facts of the situation.

It’s so easy to feel isolated in a hospital, even though there are tons of people in the building. This team was able to come into the room and make us feel like they were there to see us, and for their visit we felt like we actually had a reprieve, even if for a little while. This is extremely crucial for the emotional side of the family. I realize it’s hard to measure things like that, but every family in the hospital is going through something. One of the saddest parts to that is there are probably a few people who won’t take advantage of what palliative care can do for them because they can’t shake the feeling of acrimony over the circumstances.

Valerie and Jason Flanagan, parents of 3-year-old Anthony

Collaboration with Interpreters

Knowledge of the family’s culture of origin is important in discussions about preferences and values. Insight from interpreters, chaplains, and community elders into general standards of communication and areas that are particularly sensitive is crucial.¹⁸ However, making generalized assumptions about the meaning of culture for a particular family should be avoided.¹⁸^,¹⁹ As valued members of the interdisciplinary team, interpreters can assist by being conscious of the clinician’s tone when information is shared, as well as serving as a cultural “bridge” when there is no direct translation for a particular concept. The leader or facilitator can “preview” both the content and the actual words that will be used in the meeting. Interpreters may need time for debriefing after the meeting due to the emotional content discussed. They are often not trained in serious news disclosure and may lack the resources in their own department for support. By facilitating these discussions, the PPC team can make a significant contribution to their colleagues’ well-being.²⁰

Goals of Care

Establishing Goals of Care

Assessing and identifying a set of goals for a pediatric patient is a crucial part of PPC. The intricacies of verbalizing, refining, and revisiting these goals can be challenging for both providers and family. The following are practical steps and guidance about how to proceed as the clinical picture evolves.

Ideally, goals-of-care discussions should be initiated during calm periods. However, at times circumstances dictate that these discussions happen during a crisis when emotions are amplified for parents as well as for providers who need decisions to be made in the moment. During these pressured times, it is important to remember the human part of communication and take as much time with families as is realistically possible. Goals-of-care conversations are multifaceted and can involve personal experiences, beliefs, cultural considerations, and values which need to be elicited to come to a shared decision. Creating connections with families can help to provide a trusting environment to discuss their personal beliefs and values.

Conversations about goals of care begin by asking about the family’s beliefs, values, and experiences and then allowing them sufficient time to express their thoughts. The meaning of quality of life is subjective; therefore exploring a family’s definition is necessary to create a care plan. Many families can verbalize their definition of quality of life clearly and choose to create a plan with that exclusive focus. Some loving families may value longevity and place importance on the child being alive even if the required medical care is burdensome. Other loving families articulate the combined goal of “as long as possible” with careful attention to specific aspects of quality of life, such as the ability to breathe without technology or the ability to be awake and interact with the environment. Figure 13.1 illustrates the spectrum of goals of care through these concepts of the relationship between quality of life and longevity.

Figure 13.1 Spectrum of goals of care.

It is important to explore what factors (e.g., changes in the child’s mental status, ability to interact, expressiveness, ambulation, and nutrition) might alter the family’s decisions. Goals of care encompass a wide range of components including where the child would want to spend time, a special trip, birthdays, graduation, achieving a milestone, seeing a friend, or succeeding in a functional goal. These goals represent hope for the future and do not necessarily imply a lack of understanding of the child’s current medical status. Parents may describe their hopes and dreams for their child while at the same time fully recognize the seriousness of the illness. PPC teams can assist the primary team in understanding that families can hold hopes and reality simultaneously.

In the process of decision-making, many families appreciate a recommendation from the medical team that is consistent with their own values and goals.²¹ The palliative care team can play an important role by encouraging primary providers to offer their expert opinion. Parents often feel distress and guilt in making these significant decisions about their child on their own. Guidance and recommendations from the medical team can help them feel that the decision-making process is shouldered by all.²²^,²³ It is important to note that recommendations are offered with the proviso that a family has the autonomy to follow or not follow them.

Shifting and Reframing Goals of Care

Goals of care can change for many reasons along the illness trajectory. Opportunities to revisit goals of care include changes in medical status, declining baseline, new diagnoses, admissions to the hospital, refractory symptoms, or changes in social structure or caregiver. For example, in the case of infants with neurological abnormalities, their differences from healthy peers may not be evident until the age when developmental milestones can be evaluated. Providers can use these opportunities to ask how the family perceives the child’s development and reflect on their own observations. Another example is parents who may want to talk about goals of care for their child who has cerebral palsy and has had multiple hospital admissions for aspiration pneumonias. Helping them process their worry can provide an opportunity to explore and refocus on their goals, including improving quality of life. Working with families at a challenging time can serve as a pivot point toward the opportunity to align the plan of care with their newly refined goals.²⁴

Some families are open to disengaging from a prior goal and connecting with a new goal that is more attainable.²⁴ This openness to “regoaling” has been associated with decreased depression and improved well-being.²⁵ However, some parents may choose to continue with their initial goal because they feel that it better represents their family values and beliefs. During times of transition, palliative care providers can facilitate a discussion with the parents about their child’s current status and whether the current goal is still aligned with their values. The time frame of when parents may be open to changing goals will differ based on multiple factors including individual decision-making practices, clinical status, or immediacy of crisis. Allowing time for parents to readjust expectations and process new information is essential.

Setting the Stage for a Family Conference

A framework that is often used to discuss prognosis and goals of care involves a stepwise approach to ensure that all elements are addressed in a family-centered way. Figure 13.2 depicts the framework for prognostic disclosure including preparation, consensus building, delivery of news, pause, and follow-up.²⁶