16 Resolving Conflicts in Pediatric Palliative Care

Robert Macauley, Jody Chrastek, Amie Brandtjen, Harvey Cohen, and Thaddeus M. Pope

Conflict at one level or another is a common occurrence in personal and professional relationships, and the field of interdisciplinary pediatric palliative care (IPPC) is no exception. These conflicts may be structural—involving unequal power, authority, control, and time constraints—as well as relational, in which stereotyping, misinformation, and negative behavior can provoke intense reactions.² In general, people are averse to the high emotions that often arise in the face of disagreements. However, when conflict is ignored, trust is compromised, and a minor disagreement can devolve into a fracturing of relationships and a breakdown in communications. Conversely, when appropriately addressed, conflicts can lead to deeper team understanding and cohesion. In these instances, what may initially be viewed as a failure may in fact become an opportunity.

This chapter examines clinical scenarios in which conflict could potentially jeopardize desired outcomes for patients and families. It also identifies practical approaches to identify and work through conflict with the goal of arriving at meaningful patient- and family-centered care plans. This chapter specifically addresses conflicts between families and teams, conflicts between pediatric patients and their parents, and conflicts within teams.

Conflicts Between Families and Teams

Cases like Eric’s—in which parents request treatment that seems excessively burdensome, especially when a child is dying—are among the most challenging in pediatric palliative care. They often prompt ethics (or even legal) consultation in order to clarify the scope of parental rights. These consultations will likely explore the role of the best interest standard in the care of children who lack decision-making capacity, the increased latitude afforded parents compared to other surrogates, and the threshold for state intervention.³ (The latter, however, is more often applied to the reverse situation: where the parents refuse treatment that the medical team recommends.) Some hospitals and health systems have formalized protocols for responding to such requests⁴ based on professional consensus statements.⁵

Yet, no matter how thoughtful the analysis of ethical obligations and legal recourse, it may be unlikely to sway parents’ opinions or meaningfully impact practical outcomes. The reason is that the primary issue here is not one of dueling moralities. Everyone involved in Eric’s care—both his parents as well as the members of the medical team—share the same motivation and goal: to do what is best for Eric. The problem is that they have different opinions about what, precisely, that entails.

In that respect, it may feel as if the parents and the clinicians are speaking different languages. Clinicians in particular may respond in the same way that people often do when attempting to communicate with someone who doesn’t speak their language by saying the same thing again, louder each time. Rising volume, however, does not produce proportional increase in comprehension. Quite the contrary: it usually leads to entrenchment and heightened conflict.

Navigating such conflict requires what some have called “crucial conversations,” referring to discussions in which the stakes are high, opinions vary, and emotions run strong.⁶ (By that definition, one might argue that most palliative care conversations are “crucial.”) In preparing for such conversations, it is often helpful to “work on oneself first.” In other words, rather than trying to change the other person (in this case, Eric’s parents), it is incumbent on the palliative care professionals to explore and “own” their personal views and how these might be influencing the conversation. Since one of the primary mandates of palliative care is to ameliorate suffering, the team might understandably be frustrated that they are not able to achieve this goal for Eric. Frustration might then be directed at the perceived obstacle to accomplishing that goal (i.e., his parents), including labeling and judging them. But “judgments of others are alienated expressions of our own unmet needs,”⁷ and the best way to avoid making such judgments is to change oneself, not others.

One way that team members can identify their own needs and preconceptions is through thoughtful reflection. This can take many forms, including quiet introspection, writing down one’s thoughts about the dilemma, discussion with a close colleague, consultation from a mentor, psychotherapy, and team debriefing. A specific modality that has been used in palliative care is the Balint group, named for a British psychoanalyst who recognized that unconscious emotions and misunderstandings produce “secondary effects” on the physician–patient relationship.⁸ These groups are composed of several clinicians and a facilitator who meet regularly to discuss an actual case that involves challenging clinician–patient relational dynamics. Whoever has presented the case is required to remain silent during the ensuing discussion, offering the opportunity for additional insight and reflection to previously unrecognized dynamics within the clinical encounter. Studies have shown that the process increases clinicians’ coping ability, psychological mindedness, and patient-centeredness.⁹ This process can be particularly effective in the training context.¹⁰

One particularly dangerous assumption—especially in situations where a child may be enduring what is perceived to be burdensome treatment—is thinking on the part of clinicians that, “I would never do that, if he were my child.” Such a bias is important to identify because not only is it unhelpful, it may not even be true. For example, nearly 90% of physicians say they would want to forgo resuscitation if they were terminally ill.¹¹ However, in one study more than one-quarter of physicians who ultimately died were admitted to the ICU.¹²

Thus, there is no way to be sure what we as professionals would do in a certain situation, since we’re not actually in that situation. Given professionals’ focus on maximizing quality of life—and the recognition of the low likelihood of benefit of certain burdensome treatments—if Eric were our child and that treatment was the only chance he had at survival, we might well make the same decision as his parents.

Furthermore, even if we somehow could be certain that we wouldn’t make the same decision, the fact remains that Eric is not our child. Each family comes with its own cultural background, values, beliefs and loss history—all of which affect their decision-making about what is right for their child. Professionals have an obligation to honor the decisions that parents make, within reasonable limits. Only in rare cases will the courts override parental requests for potentially beneficial treatment, although these outliers often gain significant attention due to their unusual nature and often extreme circumstances.¹³ In the majority of cases that never go to court, professionals are left either to make peace with a decision that runs contrary to their values or to deepen the conversation with the parents in the hopes of reaching mutual understanding.

In attempting the latter, it might be tempting to provide additional factual information in the belief that if the other person truly understood, then they would agree with the team’s recommendations. Such an intellectual approach, however, can often be perceived as criticism or even badgering.⁷ Palliative care professionals are well aware that emotional responses often override intellectual analysis, so the first step should be to address the parents’ emotional needs.

Eric’s parents’ refusal to attend future care conferences is a sign that they don’t feel safe having such conversations, which in turn has led to their withdrawal from further conversation. Other manifestations of feeling unsafe include masking true feelings through sarcasm and avoiding sensitive topics in conversation. Lack of safety can also lead to violence, usually not in the physical sense—although this has been known to occur—but in the form of controlling or verbally attacking.

To feel safe in a conversation, people need two things: mutual purpose and mutual respect. Both of these are threatened in the interactions with Eric’s parents. They might believe the medical team’s purpose is to prevent him from continuing to receive life-sustaining treatment—rather than to spare him additional suffering—and do not feel that their viewpoint is respected. “Contrasting statements” may be helpful here, by acknowledging the parents’ concern that their beliefs are not being respected and proceeding to confirm that the team does, in fact, deeply value those beliefs and perspectives.⁵

To restore safety, the team can explicitly state what their purpose is: minimizing suffering while continuing to support Eric in ways that might provide benefit. Rather than assuming that his parents share that goal—let alone the means of achieving it—the team can then engage in “humble inquiry.” In contrast to the focused (and sometimes leading) questions that medical professionals often ask parents, humble inquiry is “the fine art of drawing someone out, of asking questions to which you do not already know the answer, of building a relationship based on curiosity and interest in the other person.”¹⁴ By maximizing curiosity and interest in the other person and their views, the risk of bias and preconceptions is minimized.

This approach also evens the playing field in the conversation. Power dynamics are endemic in the practice of medicine, and conflict often occurs when parents feel that their authority to make decisions for their child is threatened. By inquiring about the parents’ values and opinions, palliative care professionals render themselves “temporarily dependent and vulnerable. It is precisely [that] temporary subordination that creates psychological safety for [the parents] and, therefore, increases the chances that [they] will tell [us] what [we] need to know.”¹⁵

What we need to know, in short, is what Eric’s parents need. According to the methodology known as nonviolent communication (NVC)—with that term used in the Gandhian sense, referring to “our natural state of compassion when violence has subsided from our heart”⁷—feelings stem from unmet needs. In the case of Eric’s parents these might include needing to believe they are making the right decisions for Eric, to view themselves as “good parents,”¹⁶ and to minimize the possibility of decisional regret over not having done enough for him.

A starting point is to name the emotion that the parents seem to be expressing and then inquire about what unmet need might be prompting it. One might therefore say, “It seems as if you’re upset and frustrated. Can you tell me a little about what is making you feel that way?” There is no judgment in that question, nor any attempt to persuade the parents to change their position. Instead, it is purely an attempt to receive the parents’ needs with empathy, a foundational value in palliative care. Such an approach reflects one of the core principles of NVC: “Listen to what people are needing rather than what they are thinking.”⁷

If the palliative care professional has not guessed correctly, there is the opportunity for further inquiries about other possible explanations for the parents’ response. The primary stimulus may ultimately turn out to be something the palliative care team never considered but that the parents eventually share when they feel respected and honored by the open discussion. The mere process of humble inquiry can, therefore, begin to restore damaged trust. This is a deferential, empathy-based approach, not a technique that guarantees a particular outcome.

Parents themselves may not be aware of what need is unmet, especially if there is an unrecognized trauma or loss history. But once the unmet need is identified, the palliative care team can explore what concrete actions the parent would like taken in order to meet that need. In some instances of profound trauma, extreme care must be exercised in eliciting the issues and may belong in the hands of mental health professionals.

Such openness requires us to accept the possibility that—even after the parents’ needs are identified and hopefully met—they may remain steadfast in requesting maximal treatment. In all but the most extreme cases (where state intervention may be considered), this may appear to leave the medical team exactly where it started: watching a child suffer needlessly.

Upon closer analysis, though, the situation has markedly improved in several ways. First, the team is more attuned to their own opinions and preconceptions—including any judgment that had been directed toward the parents—which might have influenced how they were approaching the case. Second, there is deeper trust in the relationship with the parents, thus reopening the lines of communication and allowing for deeper and more candid sharing going forward. Third, this improved communication may allow for exploration of some middle ground that might satisfy the needs of both the team and the parents, such as by continuing intensive treatment while also maximizing symptom management.

Entrenched conflict leads to a black-and-white view of the world, whereas trust-based communication shifts away from “either/or”—referred to in the NVC literature as a “sucker’s choice”—toward solutions that satisfy the needs of all parties. An example of this might be a do-not-escalate-treatment (DNET) order, which preserves the parents’ hope of recovery while also preventing increased suffering as well as addressing the staff’s moral distress. Such a middle ground may address parental concerns for decisional regret by “absolving” them of ultimate responsibility. Thus, when Eric dies, it will be due to his body failing rather than the discontinuation of a treatment he was dependent on.¹⁷ Such an order may make it easier for the parents to consider subsequent further limitations, which in some studies occurs in the majority of cases of DNET orders.¹⁸

There are three situations in which minors are legally permitted to make their own medical decisions: meeting the criteria for emancipation, being deemed “mature” in the eyes of the law (in some states), or suffering from a condition that permits consent for specific treatment under the minor treatment statutes of that state (typically including sexually transmitted infection or addiction to drugs or alcohol).¹⁹ Yet even when none of these apply, the American Academy of Pediatrics (AAP) believes that “children should be involved in discussions about their healthcare.” Even when a child is incapable of giving true informed consent or refusal, their assent should still be sought. Such involvement has three core elements: “1) helping the child achieve a developmentally appropriate awareness of the condition, 2) telling the child what should be expected with tests and treatment, 3) assessing the child’s understanding and factors that influence their response.”²⁰

A fourth element —“soliciting an expression of the child’s willingness to accept the proposed care”—is only relevant if the intent is to give the child’s opinion serious consideration.²⁰ As Leikin observes, “If assent is to be honored, then dissent should be binding. If not, a promise has been broken, showing disrespect for the minor, which leads to mistrust of the physician or parents or both.”²¹

Thus, prior to speaking with the child, it is important for the specialty palliative care team to first clarify, in conversations with the parents and treating team, whether or not the willingness of the child to accept the proposed therapy will be considered before a decision is made. If not, the treatment plan should still be explained to the child in developmentally appropriate terms. However, the child would not be asked for assent. Unfortunately, this discussion with the family and team does not always happen.

Related posts:

Quality in Pediatric Palliative Care Program Development Fatigue Practical Aspects of Palliative Care Communication Advanced Heart Disease Children’s Voices: The Experience of Patients and Their Siblings

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