Pediatric Palliative Care

A Model for Exemplary Practice

Betty Davies, Rose Steele, Jennifer Baird

• Publisher: Routledge
• Year: 2021
• ISBN:
  9781000512939
• Edition: 1
• Topic: Psychologie
• Subtopic: Sozialpsychologie

Pediatric Palliative Care: A Model for Exemplary Practice lays out a road map for health-care providers interested in optimizing care for seriously ill children and their families.

Grounded in clinical practice and the study of positive rather than problematic encounters between providers and parents, the book presents an evidence-based model of exemplary interaction. The chapters offer a clear understanding of the complex, holistic process of interaction between providers and parents, as well as the personal and professional knowledge and skills needed to interact in optimal ways.

This is a one-of-a-kind guidebook for health-care providers interested in (re)discovering how to maximize positive outcomes for both families and providers. It is also a valuable source of inspiration for educators, supervisors, and hospital administrators who want to facilitate personal and professional development and create supportive environments for students, providers, seriously ill children, and their families.

1Introduction to interaction

DOI: 10.4324/9780429352393-1

Through her tears, Maria Gonzales, a Mexican American mother of a baby diagnosed prenatally with a life-threatening genetic condition, recounted her humiliation and exasperation when she was in her 16th hour of labor that had begun earlier than expected. Maria spoke very little English and had no family available to accompany her to the hospital. Her husband, who was also her interpreter, was working out of town, and, though he was trying to get to the hospital, he had not yet arrived. A young female physician had stood at the doorway of the labor room, coffee in one hand and a donut in the other, and called out cheerfully: Still waiting? Hang in there! Maria had no idea what the doctor meant by still waiting. Waiting for what? Was there something she was supposed to do and was that the reason no one was with her or paying attention to her? Maria heard the words “hang in there” but did not understand the meaning of this common colloquialism. Instead of being reassured as the doctor may have intended, Maria’s fear was enhanced by her confusion about what it was she herself was supposed to be doing. Moreover, Maria had never experienced a professional eating casually while with a patient, and in her culture to do so was considered very rude. In recounting this encounter three years later, Maria cried again, still troubled by the memory of feeling so alone, so helpless, so confused, and so ignored by this physician.

Maria Gonzales’ experience illustrates what we (the authors) know from our own work in the field of pediatric palliative care along with two decades of literature focused on families of children with complex, chronic, and potentially life-threatening conditions (CCCs), which are conditions that affect multiple organ and body systems, are long term, and carry the potential of early death (Feudtner et al., 2000). The stress of constant worry and the uncertainty of their child’s prognosis permeates the lives of these parents, and they deserve optimal sensitivity from those who care for their child and them. Insensitive interactions with pediatric health-care providers (PHCPs) threaten these parents’ well-being; their sense of security, comfort, and capability to care for their child; their perceptions of the quality of care their child and they receive; their trust in the health-care system and in PHCPs; how they cope with their child’s illness over the long term; and the course of bereavement if and when their child dies (Butler et al., 2015; Cadell et al., 2014; Davies et al., 2007; Melin-Johansson et al., 2014; Stevenson et al., 2013; Xafis et al., 2015).

Supportive and human-to-human interaction may be especially important for non-English-speaking and socially and economically disadvantaged families, such as Maria Gonzales and her family, a crucial consideration as population demographics shift due to immigration and socioeconomic changes (Contro et al., 2010; Davies et al., 2011). For example, training programs for ethnically Chinese volunteers and caregivers have identified the importance of skilled interactions within a medical setting as a priority for optimal interpersonal strategies for conveying end-of-life information to this particular population (Chou et al., 2008; Munet-Vilaro, 2004). In addition, attention should be paid to potential gender and role differences because fathers report that they receive less attention than mothers and have their own unique experiences to share (Davies et al., 2004, 2013). Evidence suggests that parents who perceive PHCPs as impersonal and uncaring experience guilt long after their child’s death when they feel they were not given information in a dignified way, cannot discuss their child’s condition with staff, and have unanswered questions (Davies et al., 2010; Surkan et al., 2006).

Parents’ worries about their child’s care are typically centered on negative or unhelpful interactions. They express feelings of anger and frustration when PHCPs fail to respond appropriately, as illustrated by parents’ distress when PHCPs are rude, dismissive of their observations about their child, or treat their children as guinea pigs rather than as human beings (Contro et al., 2002; Davies et al., 2013; Woodgate, 2006). Parents resent being made to feel inadequate in their parenting role, being pushed aside, or being ignored as busy PHCPs go about their routine work. Without sufficient ongoing emotional and social support, parents feel isolated and distressed (Contro et al., 2004). Some parents even advise that PHCPs need specific interpersonal skills training (Garwick et al., 1998).

The Power of Negative Interactions

Given the impact of parents’ encounters with insensitive PHCPs, it is not surprising that parents focus on their negative interactions. Nor is it surprising that researchers address problems identified by parents or other groups of people and that clinicians are often problem-focused. As nurses ourselves, we understand the desire of PHCPs to seek ways to address the difficult situations they confront every day, for example, telling parents of their child’s cancer diagnosis. We acknowledge that clinicians want to know what to say; they want to learn how to find the right words to inform, teach, and comfort. There is a need (and a responsibility) to know how to do such things. However, this basic, sometimes desperate, need is often based on the idea that for every problem there is an answer in the form of an action or procedure that, if implemented, will guide clinicians to successful resolution of the problem. Moreover, because health care is a fast-paced world in which efficiency is the hallmark of success, clinicians sometimes mistakenly believe that if they can identify the problem and know what to say, then they can follow the procedure quickly and check off that the problem has been solved. Thus, clinicians have a tendency to focus on problems.

In a classic psychology article, Baumeister and colleagues (2001) extensively reviewed the evidence pertaining to the general hypothesis that bad is stronger than good. They concluded that the idea is a basic and wide-ranging principle across a broad range of psychological phenomena found in everyday events, including major life events (e.g., trauma), close relationship outcomes, social network patterns, interpersonal interactions, and learning processes. They suggested that the comparative strength of a bad perspective reflects an evolutionary adaptive mechanism, because negative experiences often motivate human beings to change, to seek alternative ways of doing things or thinking about what they do.

We know from psychology, and from our own experiences, that people can often remember the details of negative experiences much more than the details of positive experiences. For example, when people are asked where they or their family members were on the day that the World Trade Center in New York City was attacked, most people can repeat details of the day—not only where they were, but also what exactly they were doing just before they heard the news reports. This remarkable ability to conjure up even the smallest details surrounding a tragic or traumatic event is directly related to the intensity of the event itself. In other words, the more emotionally disturbing the experience is, the more likely people are to commit it to memory, because memory and emotion are inextricably linked in the human brain. In her book, The Balance Within: The Science Connecting Health and Emotions, Dr. Esther Sternberg (2001) pointed out that memory is one of the major factors mediating between sensation and emotional experience. She proposed that memories of past experience become triggers for future psycho-emotional responses and so influence the present experience. Thus, when parents have had a negative experience with a PHCP, recounting that event can continue to trigger negative emotional responses. The parents’ memories become entrenched with the negative emotions associated with them.

Moreover, Dr. Bessell van der Kolk, a professor of psychiatry at Boston University Medical School and a leading researcher in the area of traumatic stress, claimed that stress occurring at the hands of people who are supposed to take care of you is particularly traumatic because one’s sense of safety and predictability is threatened (van der Kolk, 2015). Parents of children with CCCs are, of course, already feeling vulnerable and lost in the uncertainty that characterizes their situation. Having negative interactions with professionals, the very people from whom parents expect help, only magnifies the distress they already feel.

Baumeister et al. (2001) further reported that bad impressions and bad stereotypes are quicker to form and are more resistant to disconfirmation than are good ones. Moreover, the initial acts in an interaction create expectancies and set the tone for further ones, and if subsequent acts differ, then the expectancies are violated. Therefore, if a PHCP starts off by behaving in a friendly, interested manner and then becomes aloof and unfriendly, the impact on the patient or family member is greater than if a practitioner is initially aloof and unfriendly and then warms up. Violations of expected behavior produce strong reactions, but violations in the negative direction have even stronger effects than a positive direction. Furthermore, Gottman (1994, as cited in Baumeister et al., 2001) reported that bad events are so much stronger than good ones that the good must far outnumber the bad in order to prevail. Gottman’s index (1994, as cited in Baumeister et al., 2001) suggests that bad events are on average five times as powerful as good ones, at least with regard to relationships, such as the personal relationships between parents and PHCPs. Thus, to compensate for every negative interaction with one PHCP, parents must experience five positive ones from the same provider. Given the large number of staff that parents and their ill children encounter in hospital, the likelihood may be low for opportunities that provide the requisite number of compensatory interactions from any one provider.

Communication versus Interaction

Because negative PHCP–parent interactions are so powerful and influential, we therefore understood why so much has been written about relationships that were not good or interactions that did not go well. Further, it became clear why very little had been written about interactions that had gone well, despite the emphasis on communication skills in professional education. A vast literature that stresses the importance of clinicians’ effective communication with families of patients nearly always highlights problems in communication. These problems include avoidance of discussions regarding care and prognosis, missed opportunities for conversation, and a failure of open, thoughtful, supportive, and hopeful dialogue so that, consequently, parents’ opinions and personhood are ignored (Heller & Solomon, 2005). Even curricula (e.g., American Association of Colleges of Nursing, 2018; National Hospice and Palliative Care Organization, 2018) and training workshops (Kolarik et al., 2006) specifically designed to enhance excellence in pediatric palliative care often fail to address issues of optimal interaction within their communication skills training modules. Areas of concern are typically restricted to “how to” guidelines for giving bad news, helping to make decisions, and employing active listening skills rather than developing an understanding of the broader concepts of interaction (Contro et al., 2002). Such guidelines imply that providing information is the central aspect of communication between PHCPs and parents, with the result that communication is often perceived simply as another procedure or protocol to follow rather than as a component of a complex relationship between individuals.

But we also knew that parents consistently identify valued interaction patterns, such as when PHCPs give basic information and explain the implications of the information while also attending to the questions and emotional responses of parents and children (Davies et al., 2010). In addition to clinical competence, parents value how PHCPs interact with, relate to, and form human–human relationships with them (Steele & Davies, 2006; Woodgate, 2006). Fathers have commented that most interactions are good, with some not-so-good, but there are only a few that are excellent (Davies & Gudmundsdottir, 2006). The excellent interactions stood out because those PHCPs listened to the fathers, sat down when they talked to them, looked them in the eye, did not treat the children like guinea pigs, and regarded fathers as human beings. Parents also value small acts of human kindness (Macdonald et al., 2005), as well as support, assistance, and empathy (Janzen et al., 2003–2004; Rehm, 1999). They recognize the emotional impact of interactions with PHCPs and the importance of collaboration and partnership but lament that finding true partnerships is not easy (Bonanno et al., 2005). In contrast to their detailed descriptions of what went wrong in a negative intera...