The Communication of Palliative Care Adoption in a Pediatric Intensive Care Unit

Miriam Neis, MS; Cristianne Maria Famer Rocha, PhD; Paulo Roberto Antonacci Carvalho, MD, PhD

Disclosures

Pediatr Nurs. 2020;46(3):138-145. 

In This Article

Abstract and Introduction

Abstract

Since 1990, palliative care has been recommended by the World Health Organization as an alternative treatment for individuals with incurable and advanced diseases. It aims for a longer life with better quality and a process of dying without suffering. In the pediatric universe, palliative care is recommended in cases where no treatment can substantially change the expected disease progression or clinical condition of the child toward death. The decision-making process and communication about the adoption of Palliative Care in the Pediatric Intensive Care Unit (ICU) is a challenge for professionals because of ethical dilemmas and the emotional load this type of situation generates in the child's family and in the health team itself. A descriptive exploratory study sought to understand the development of the interprofessional team's communication processes when deciding on the adoption of Palliative Care in the Pediatric ICU, analyzing their effectiveness. Eleven family interviews were conducted, 15 questionnaires were completed by physicians, and 20 questionnaires were completed by nurses after meetings for the palliative care decision process. The study was carried out from January to November 2017 at the Pediatric ICU at the Hospital de Clínicas de Porto Alegre, Brazil. The analysis of the collected data showed that in 10 of the 14 cases observed, there was communicative effectiveness. In the four cases considered ineffective, the communication process lacked feedback techniques to check for understanding and agreement of all parties on the issues addressed. Effectiveness is not the only element to confer total adequacy in this type of communicative process. As identified by the analysis of data collected, elements such as better psychological connection, choice of milder words, demonstration of affection, and concern for the families' feelings lacked in some situations.

Introduction

The philosophy of palliative care emerged in England in the mid-1960s through the Modern Hospice Movement foundation, led by Dame Cicely Saunders, whose goal was to idealize new care and treatment forms for terminally ill patients. Based on caring for the dying human being and their family with compassion and empathy, palliative care focuses on patient care, not on the illness, mainly promoting quality of life and allowing a patient and family autonomous participation about interventions. Palliative care concepts integrate a type of global care, translated into measures that alleviate pain and other distressing symptoms, facing death as a natural process of the human being. Thus, palliative care disapproves of the continued use of life-sustaining technologies in individuals with incurable and advanced diseases without criteria, aiming for a greater quality of remaining life and a process of dying without suffering (Floriani & Schramm, 2008). The World Health Organization (WHO) recommended its adoption in 1990 (Floriani & Schramm, 2008).

For the pediatric universe, the palliative care philosophy officially arrived about 10 years later. In its statement Palliative Care for Children, the American Academy of Pediatrics (AAP) proposed a palliative care promotion model for children with life-threatening or terminal conditions (Committee on Bioethics and Committee on Hospital Care, 2000). In this document, the differences between the causes of death in adults and children are highlighted, justifying the need to adapt the guidelines of palliative care specific for children. According to the AAP statement, a child may benefit from palliative care when no treatment can substantially alter the expected progression of the disease or its clinical condition toward death. Thus, the focus of pediatric palliative care is to improve the quality of life related to the terminal condition, the relief of symptoms, and conditions that cause distress and damage the joy of living.

The Hospital de Clínicas de Porto Alegre (HCPA) Pediatric Intensive Care Unit (PICU) in Brazil, where the present study was performed, has developed a strategy to contemplate, in its methods, palliative care when pertinent. After all doubts and curative possibilities have been exhausted, and all teams have reached a consensus, a pediatric palliative care team consultation is requested. This team schedules a meeting with the child's family for the first approach on the subject.

It is in this context that questions arise: in such a delicate moment as the meeting to define the palliative care adoption in children at the PICU, what are the characteristics of the communication between interprofessional team members and the family? Moreover, how is the outcome of this communication shared with other team members? Moritz and colleagues (2008) affirm it is necessary to prioritize an adequate communication among those involved in the palliative care implementation process because poor communication is a main barrier that generates conflicts in the treatment of a terminal patient in the ICU. Harrison and colleagues (2014) also affirm that communication is a key element for implementing effective palliative care. Hendricks-Ferguson and colleagues (2015) emphasize that communication is essential to equip parents to make informed decisions about their child's medical care.

However, what does adequate communication mean in this context? What characteristics of the communication between these individuals are considered adequate or harmful? Furthermore, how should this communication be shared with the other members of the interprofessional team to avoid misinterpretation and conflicts?

According to Jakobson (1969), the communication process occurs successfully when the recipient of the message can understand the context and the language transmitted by the communicator and establish with them a psychological connection. Each of these items presents a challenge for health professionals, who need to explain clinical situations in a language families can understand. In addition, due to the need for scientific improvement to promote increasingly effective and correct diagnoses and treatments, health professional undergraduate and postgraduate courses give little space to disciplines that aim to develop communication skills (Rossi & Batista, 2006). In the pediatrics field, it is also possible to identify a limited investment in palliative care and end-of-life communication training (Hendricks-Ferguson et al., 2015).

This research objective was to understand how the communication processes of the interprofessional team develop among themselves and together with the family of the hospitalized child when deciding on the adoption of palliative care in the PICU, analyzing their effectiveness. The peculiarities of communication in the decision process were analyzed, and the information about the resolutions taken among caregivers professionals was shared.

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