What hinders and helps in the end-of-life decision-making process for children: Parents' and physicians' views.

AIM: To investigate the main factors which facilitate or hinder end-of-life decision-making (EoLDM) in neonates and children. METHODS: A qualitative inductive, thematic analysis was performed of interviews with a total of 73 parents and 71 physicians. The end-of-life decisions mainly concern decisions to withhold or withdraw life-sustaining treatment. RESULTS: The importance of taking sufficient time and exchanging clear, neutral and relevant information was main facilitators expressed by both parents and physicians. Lack of time, uncertain information and changing doctors were seen as important barriers by both parties. Most facilitators and barriers could be seen as two sides of the same coin, but not always. For example, some parents and physicians considered the fact that parents hold strong opinions as a barrier while others considered this a facilitator. Furthermore, parents and physicians showed differences. Parents especially underlined the importance of physician-related facilitators, such as a personalised approach, empathy and trust. On the contrary, physicians underlined the importance of the child's visible deterioration and parents' awareness of the seriousness of their child's condition and prognosis as facilitators of EoLDM. CONCLUSIONS: This study gained insight into what parents and physicians experience as the main barriers and facilitators in EoLDM for neonates and children.

Family support on intensive care units during the COVID-19 pandemic: a qualitative evaluation study into experiences of relatives.

BACKGROUND: During the first peak of the COVID-19 pandemic in the Netherlands, relatives of patients with COVID-19 admitted to Intensive Care Units (ICUs) were severely restricted in visiting their relatives and in communicating with treating physicians. Family communication is a core element of critical care, however, this pandemic forced medical ICU staff to arrange alternative family support for instance by Family Support Teams (FSTs), consisting of non-ICU affiliated staff who telephonically contacted relatives. This study aims to examine relatives' experiences with FSTs on two ICUs of a Dutch university medical centre, and to evaluate its working strategies. . METHODS: In a semi-structured interview study, relatives of patients with COVID-19 admitted to ICU's, who had been supported by the FSTs, were sampled purposively. Twenty-one interviews were conducted telephonically by three researchers. All interviews were topic list guided and audio-recorded. Data was analysed thematically. RESULTS: All participants indicated they went through a rough time. Almost all evaluated the FSTs positively. Four major themes were identified. First, three important pillars of the FSTs were providing relatives with transparency about the patients' situation, providing attention to relatives' well-being, and providing predictability and certainty by calling on a daily basis in a period characterised by insecurity. Second, relatives appeared to fulfil their information needs by calls of the FSTs, but also by calling the attending ICU nurse. Information provided by the FSTs was associated with details and reliability, information provided by nurses was associated with the patient's daily care. Third, being a primary family contact was generally experienced as both valuable and as an emotional burden. Last, participants missed proper aftercare. Family support often stopped directly after the patient died or had left the ICU. Relatives expressed a need for extended support after that moment since they had strong emotions after discharge or death of the patient. CONCLUSIONS: Family support in times of the extreme COVID-19 situation is important, as relatives are restricted in communication and have a strong need for information and support. Relatives feel encouraged by structure, frequency, support and understanding by FSTs. However, remote family support should be tailored to the needs of relatives. A fixed contact person on de ICU and video calling might be good extra options for family support, also in future post COVID-19 care, but cannot replace physical visits.

Parents who wish no further treatment for their child.

BACKGROUND: In the ethical and clinical literature, cases of parents who want treatment for their child to be withdrawn against the views of the medical team have not received much attention. Yet resolution of such conflicts demands much effort of both the medical team and parents. OBJECTIVE: To discuss who can best protect a child's interests, which often becomes a central issue, putting considerable pressure on mutual trust and partnership. METHODS: We describe the case of a 3-year-old boy with acquired brain damage due to autoimmune-mediated encephalitis whose parents wanted to stop treatment. By comparing this case with relevant literature, we systematically explored the pros and cons of sharing end-of-life decisions with parents in cases where treatment is considered futile by parents and not (yet) by physicians. CONCLUSIONS: Sharing end-of-life decisions with parents is a more important duty for physicians than protecting parents from guilt or doubt. Moreover, a request from parents on behalf of their child to discontinue treatment is, and should be, hard to over-rule in cases with significant prognostic uncertainty and/or in cases with divergent opinions within the medical team.

Argumentation in end-of-life conversations with families in Dutch intensive care units: a qualitative observational study.

PURPOSE: In intensive care units (ICUs), decisions about the continuation or discontinuation of life-sustaining treatment (LST) are made on a daily basis. Professional guidelines recommend an open exchange of standpoints and underlying arguments between doctors and families to arrive at the most appropriate decision. Yet, it is still largely unknown how doctors and families argue in real-life conversations. This study aimed to (1) identify which arguments doctors and families use in support of standpoints to continue or discontinue LST, (2) investigate how doctors and families structure their arguments, and (3) explore how their argumentative practices unfold during conversations. METHOD: A qualitative inductive thematic analysis of 101 audio-recorded conversations between doctors and families. RESULTS: Seventy-one doctors and the families of 36 patients from the neonatal, pediatric, and adult ICU (respectively, N-ICU, P-ICU, and A-ICU) of a large university-based hospital participated. In almost all conversations, doctors were the first to argue and families followed, thereby either countering the doctor's line of argumentation or substantiating it. Arguments put forward by doctors and families fell under one of ten main types. The types of arguments presented by families largely overlapped with those presented by doctors. A real exchange of arguments occurred in a minority of conversations and was generally quite brief in the sense that not all possible arguments were presented and then discussed together. CONCLUSION: This study offers a detailed insight in the argumentation practices of doctors and families, which can help doctors to have a sharper eye for the arguments put forward by doctors and families and to offer room for true deliberation.

Diversity of Parent Emotions and Physician Responses During End-of-Life Conversations.

BACKGROUND AND OBJECTIVES: To provide support to parents of critically ill children, it is important that physicians adequately respond to parents' emotions. In this study, we investigated emotions expressed by parents, physicians' responses to these expressions, and parents' emotions after the physicians' responses in conversations in which crucial decisions regarding the child's life-sustaining treatment had to be made. METHODS: Forty-nine audio-recorded conversations between parents of 12 critically ill children and physicians working in the neonatal and pediatric intensive care units of 3 Dutch university medical centers were coded and analyzed by using a qualitative inductive approach. RESULTS: Forty-six physicians and 22 parents of 12 children participated. In all 49 conversations, parents expressed a broad range of emotions, often intertwining, including anxiety, anger, devotion, grief, relief, hope, and guilt. Both implicit and explicit expressions of anxiety were prevalent. Physicians predominantly responded to parental emotions with cognition-oriented approaches, thereby limiting opportunities for parents. This appeared to intensify parents' expressions of anger and protectiveness, although their anxiety remained under the surface. In response to more tangible emotional expressions, for instance, grief when the child's death was imminent, physicians provided parents helpful support in both affect- and cognition-oriented ways. CONCLUSIONS: Our findings illustrate the diversity of emotions expressed by parents during end-of-life conversations. Moreover, they offer insight into the more and less helpful ways in which physicians may respond to these emotions. More training is needed to help physicians in recognizing parents' emotions, particularly implicit expressions of anxiety, and to choose helpful combinations of responses.

Conversations About End-of-Life Decisions in Neonatology: Do Doctors and Parents Implement Shared Decision-Making?

Introduction: Advances in perinatal medicine have contributed to significantly improved survival of newborns. While some infants die despite extensive medical treatment, a larger proportion dies following medical decision-making (MDM). International guidelines about end-of-life (EOL) MDM for neonates unify in their recommendation for shared decision-making (SDM) between doctors and parents. Yet, we do not know to what extent SDM is realized in neonatal practice. Objective: We aim at examining to which extent SDM is implemented in the NICU setting. Methods: By means of Qualitative Content Analysis, audio-recorded conversations between neonatologists and parents were analyzed. We used a framework by de Vos that was used to analyze similar conversations on the PICU. Results: In total we analyzed 17 conversations with 23 parents of 12 NICU patients. SDM was adopted only to a small extent in neonatal EOL-MDM conversations. The extent of sharing decreased considerably over the stages of SDM. The neonatologists suggested finding a decision together with parents, while at the same time seeking parents' agreement for the intended decision to forgo life-sustaining treatment. Conclusions: Since SDM was only realized to a small extent in the NICU under study, we propose evaluating how parents in this unit experience the EOL-MDM process and whether they feel their involvement in the process acceptable and beneficial. If parents evaluate their involvement in the current approach beneficial, the need for implementation of SDM to the full extent, as suggested in the guidelines, may need to be critically re-assessed.

How doctors manage conflicts with families of critically ill patients during conversations about end-of-life decisions in neonatal, pediatric, and adult intensive care.

PURPOSE: Intensive care is a stressful environment in which team-family conflicts commonly occur. If managed poorly, conflicts can have negative effects on all parties involved. Previous studies mainly investigated these conflicts and their management in a retrospective way. This study aimed to prospectively explore team-family conflicts, including its main topics, complicating factors, doctors' conflict management strategies and the effect of these strategies. METHODS: Conversations between doctors in the neonatal, pediatric, and adult intensive care unit of a large university-based hospital and families of critically ill patients were audio-recorded from the moment doubts arose whether treatment was still in patients' best interest. Transcripts were coded and analyzed using a qualitative deductive approach. RESULTS: Team-family conflicts occurred in 29 out of 101 conversations (29%) concerning 20 out of 36 patients (56%). Conflicts mostly concerned more than one topic. We identified four complicating context- and/or family-related factors: diagnostic and prognostic uncertainty, families' strong negative emotions, limited health literacy, and burden of responsibility. Doctors used four overarching strategies to manage conflicts, namely content-oriented, process-oriented, moral and empathic strategies. Doctors mostly used content-oriented strategies, independent of the intensive care setting. They were able to effectively address conflicts in most conversations. Yet, if they did not acknowledge families' cues indicating the existence of one or more complicating factors, conflicts were likely to linger on during the conversation. CONCLUSION: This study underlines the importance of doctors tailoring their communication strategies to the concrete conflict topic(s) and to the context- and family-related factors which complicate a specific conflict.

How Physicians Discuss Uncertainty With Parents in Intensive Care Units.

BACKGROUND AND OBJECTIVES: Physicians and parents of critically ill neonates and children receiving intensive care have to make decisions on the child's behalf. Throughout the child's illness and treatment trajectory, adequately discussing uncertainties with parents is pivotal because this enhances the quality of the decision-making process and may positively affect the child's and parents' well-being. We investigated how physicians discuss uncertainty with parents and how this discussion evolves over time during the trajectory. METHODS: We asked physicians working in the NICU and PICU of 3 university medical centers to audio record their conversations with parents of critically ill children from the moment doubts arose whether treatment was in the child's best interests. We qualitatively coded and analyzed the anonymized transcripts, thereby using the software tool MAXQDA 2020. RESULTS: Physicians were found to adapt the way they discussed uncertainty with parents to the specific phase of the child's illness and treatment trajectory. When treatment options were still available, physicians primarily focused on uncertainty related to diagnostic procedures, treatment options, and associated risks and effects. Particularly when the child's death was imminent, physicians had less "scientific" guidance to offer. They eliminated most uncertainty and primarily addressed practical uncertainties regarding the child's dying process to offer parents guidance. CONCLUSIONS: Our insights may increase physicians' awareness and enhance their skills in discussing uncertainties with parents tailored to the phase of the child's illness and treatment trajectory and to parental needs in each specific phase.

Talking with parents about end-of-life decisions for their children.

BACKGROUND AND OBJECTIVE: Retrospective studies show that most parents prefer to share in decisions to forgo life-sustaining treatment (LST) from their children. We do not yet know how physicians and parents communicate about these decisions and to what extent parents share in the decision-making process. METHODS: We conducted a prospective exploratory study in 2 Dutch University Medical Centers. RESULTS: Overall, 27 physicians participated, along with 37 parents of 19 children for whom a decision to withhold or withdraw LST was being considered. Forty-seven conversations were audio recorded, ranging from 1 to 8 meetings per patient. By means of a coding instrument we quantitatively and qualitatively analyzed physicians' and parents' communicative behaviors. On average, physicians spoke 67% of the time, parents 30%, and nurses 3%. All physicians focused primarily on providing medical information, explaining their preferred course of action, and informing parents about the decision being reached by the team. Only in 2 cases were parents asked to share in the decision-making. Despite their intense emotions, most parents made great effort to actively participate in the conversation. They did this by asking for clarifications, offering their preferences, and reacting to the decision being proposed (mostly by expressing their assent). In the few cases where parents strongly preferred LST to be continued, the physicians either gave parents more time or revised the decision. CONCLUSIONS: We conclude that parents are able to handle a more active role than they are currently being given. Parents' greatest concern is that their child might suffer.

The process of end-of-life decision-making in pediatrics: a national survey in the Netherlands.

OBJECTIVE: The goal of this study was to investigate how Dutch pediatric specialists reach end-of-life decisions, how they involve parents, and how they address conflicts. METHODS: We conducted a national cross-sectional survey among pediatric intensivists, oncologists, neurologists, neurosurgeons, and metabolic pediatricians practicing in the 8 Dutch university hospitals. We collected information on respondents' overall opinions and their clinical practice. RESULTS: Of the 185 eligible pediatric specialists, 74% returned the questionnaire. All responding physicians generally discuss an end-of-life decision with colleagues before discussing it with parents. In half of the reported cases, respondents informed parents about the intended decision and asked their permission. In one-quarter of the cases, respondents informed parents without asking for their permission. In the remaining one-quarter of the cases, respondents advised parents and consequently allowed them to have the decisive voice. The chosen approach is highly influenced by type of decision and type and duration of treatment. Conflicts within medical teams arose as a result of uncertainties about prognosis and treatment options. Most conflicts with parents arose because parents had a more positive view of the prognosis or had religious objections to treatment discontinuation. All conflicts were eventually resolved by a combination of strategies. In 66% of all cases, pain and symptom management were intensified before the child's death. CONCLUSIONS: Within Dutch pediatrics, end-of-life decisions are team decisions. Pediatric specialists differ considerably in how they involve parents in end-of-life decision-making, ranging from benevolent paternalism to parental autonomy. Main conflict-solving strategies are taking more time and extending discussions.