"Can you tell me why you made that choice?": A qualitative study of the influences on treatment decisions in advance care planning among adolescents and young adults undergoing bone marrow transplant.

BACKGROUND: Adolescent and young adult advance care planning is beneficial in improving communication between patients, surrogates, and clinicians. The influences on treatment decisions among adolescents and young adults are underexplored in the literature. AIM: The aim of this study was to explore and better understand the influences on decision-making for adolescent and young adult bone marrow transplant patients about future medical care. DESIGN: Clinical case studies and qualitative inductive content analysis of treatment decisions made during the Respecting Choices® Next Steps Pediatric Advance Care Planning conversation as a component of the Family-Centered Advance Care Planning Intervention. SETTINGS/PARTICIPANTS: A total of 10 adolescent and young adult patients (aged 14-27 years) undergoing bone marrow transplant at an academic Midwest children's hospital were involved in the study. RESULTS: Influences on participants' decisions were consideration for family, quality of life, and awareness of self. Desire to avoid suffering and maintain an acceptable quality of life was often in competition with participant's concern over the perceived negative impact of discontinuing treatment on their families. CONCLUSION: This study highlights that adolescent and young adult bone marrow transplant patients are capable of meaningful deliberation about future treatment decisions. Influences on decision-making should be incorporated into advance care planning conversations to facilitate communication between patients and their surrogates. Longitudinal research is needed to explore these influences throughout the trajectory of illness.

Physicians' Perspectives on Adolescent and Young Adult Advance Care Planning The Fallacy of Informed Decision Making.

Advance care planning (ACP) is a process that seeks to elicit patients' goals, values, and preferences for future medical care. While most commonly employed in adult patients, pediatric ACP is becoming a standard of practice for adolescent and young adult patients with potentially life-limiting illnesses. The majority of research has focused on patients and their families; little attention has been paid to the perspectives of healthcare providers (HCPs) regarding their perspectives on the process and its potential benefits and limitations. Focus groups were conducted with 15 physicians as part of a larger study of adolescent and young adult ACP in hematopoietic stem cell transplant (HSCT) patients. This study identified two categories important to the utility of ACP in pediatric HSCT patients; (1) the temporal context of ACP and decision making and (2) the limitations of pediatric ACP, with subcategories identified as (a) embodied and witnessed knowing, (b) the impact of clinical cascades-when the treatment of one organ system creates complications in another system that needs to be treated-and a creation of a "new normal" following complications of illness and its treatment in the pediatric intensive care unit (PICU), (c) the balancing of adolescents' autonomy with their capacity to make informed medical decisions, and (d) the epistemological frames that differ between HCP and patients and their families. These findings support ACP in adolescent and young adult HSCT patients, with a number of implications for practice as this process becomes more common.

Influence of personal preferences for life-sustaining treatment on medical decision making among pediatric intensivists.

OBJECTIVES: Withholding and withdrawal of life-sustaining treatment by physicians is influenced by a variety of factors; the role of physicians' personal preferences for life-sustaining treatments has not previously been explored. We sought to examine the relationship between personal preferences for life-sustaining treatment and medical decision making among pediatric intensivists. DESIGN: Cross-sectional national anonymous mail survey. SUBJECTS: All board-certified/eligible pediatric intensivists identified by the American Medical Association Masterfile. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: A total of 471 (30%) surveys were returned. A Personal Preference Score was calculated from responses to personal-preference questions for life-sustaining treatments adapted from "Your Life, Your Choices," by Pearlman et al. Physicians were asked to consider the "acceptability" of offering and recommending treatment options involving life-sustaining treatments in a hypothetical scenario of a 2-yr old with a high cervical spinal-cord transection. Logistic regression controlling for sociodemographic characteristics found significant relationships (p<.01) between physicians' own preferences modeled as a one standard deviation change in their own Personal Preference Score (preference for life-sustaining treatment) and whether they offered more or less aggressive care (OR [95%CI]). Physicians who had a higher Personal Preference Score (higher preference for their own life-sustaining treatment) were more likely to recommend a tracheostomy (1.38 [1.35-1.41]) and reintubation if the patient failed extubation (1.87 [1.81-1.94]). Pediatric intensivists who had a lower Personal Preference Score (lower preference for life-sustaining treatment) were more likely to recommend that the patient not be reintubated if extubation failed (1.42 [1.39-1.46]) and to recommend Do Not Resuscitate status (1.34 [1.31-1.37]). CONCLUSIONS: Among pediatric intensivists, personal preferences for life-sustaining treatment were significantly associated with scenario-based responses to acceptability of withholding and withdrawal of life-sustaining treatment. Physicians should be aware of the potential for personal preferences to influence practice recommendations, and endeavor to elicit and respect family preferences in collaborative decision making.

Parental anxiety and medical comprehension within 24 hrs of a child's admission to the pediatric intensive care unit*.

OBJECTIVE: Admission of a child to the pediatric intensive care unit (PICU) can create high-parental anxiety. The authors examined the factors that contribute to parental anxiety and the effect of parental anxiety on comprehension of medical information within 24 hrs of a child's admission to the PICU. The physician's recognition of parental anxiety related to their child's hospitalization was also evaluated. DESIGN: Prospective cohort study with a convenience sample of primary caregivers of critically ill children. SETTING: Twenty-bed PICU at an urban tertiary children's hospital. SUBJECTS: The primary caregivers of 35 children with Pediatric Risk of Mortality III scores >or=7 admitted to the PICU as well as PICU fellows. INTERVENTIONS: Parental anxiety was assessed with the State-Trait Anxiety Inventory, a validated tool used to measure both the temporary (State) and long-standing (Trait) anxiety in adults. Comprehension of medical information was assessed by an open-ended questionnaire. Physician assessment of parental anxiety was measured by multiple-choice questionnaire. MEASUREMENTS AND MAIN RESULTS: Of the 34 parents completing the State-Trait Anxiety Inventory, 21 (62%) had State Anxiety that was significantly higher than a validated sample of patients with generalized anxiety disorder. The child's need for mechanical ventilation was the only significant predictor of high-parental State Anxiety (p = .03). Among the 28 parents completing the questionnaire of comprehension of medical information, 26 (93%) demonstrated excellent or fair comprehension. Physicians had generally low recognition of parental anxiety but were significantly more likely to rate a parent's anxiety as high if the child was on mechanical ventilation. CONCLUSION: Parental anxiety is high following a child's admission to the PICU. Physicians failed to recognize high-parental anxiety in nearly one third of the parents. Despite the high anxiety associated with a child's admission to the PICU, parents seem to understand their children's medical issues within the first 24 hrs.