"We Feel Alone and Not Listened To": Parents' Perspectives on Pediatric Serious Illness Care in Somali, Hmong, and Latin American Communities.

PURPOSE: The experience of ethnically diverse parents of children with serious illness in the US health care system has not been well studied. Listening to families from these communities about their experiences could identify modifiable barriers to quality pediatric serious illness care and facilitate the development of potential improvements. Our aim was to explore parents' perspectives of their children's health care for serious illness from Somali, Hmong, and Latin-American communities in Minnesota. METHODS: We conducted a qualitative study with focus groups and individual interviews using immersion-crystallization data analysis with a community-based participatory research approach. RESULTS: Twenty-six parents of children with serious illness participated (8 Somali, 10 Hmong, and 8 Latin-American). Parents desired 2-way trusting and respectful relationships with medical staff. Three themes supported this trust, based on parents' experiences with challenging and supportive health care: (1) Informed understanding allows parents to understand and be prepared for their child's medical care; (2) Compassionate interactions with staff allow parents to feel their children are cared for; (3) Respected parental advocacy allows parents to feel their wisdom is heard. Effective communication is 1 key to improving understanding, expressing compassion, and partnering with parents, including quality medical interpretation for low-English proficient parents. CONCLUSIONS: Parents of children with serious illness from Somali, Hmong, and Latin-American communities shared a desire for improved relationships with staff and improved health care processes. Processes that enhance communication, support, and connection, including individual and system-level interventions driven by community voices, hold the potential for reducing health disparities in pediatric serious illness.

Bioethics for Neonatal Cardiac Care.

BACKGROUND: Clinicians caring for neonates with congenital heart disease encounter challenges with ethical implications in daily practice and must have some basic fluency in ethical principles and practical applications. METHODS: Good ethical practice begins with a thorough understanding of the details and narrative of each individual case, examination via classic principles of bioethics, and further framing of that translation into practice. RESULTS: We explore some of these issues and expand awareness through the lens of a case presentation beginning with fetal considerations through end-of-life discussions. CONCLUSIONS: We include specific sections that bring attention to shared decision-making, research ethics, and outcomes reporting. We review empirical evidence and highlight recommendations.

Effect of the Family-Centered Advance Care Planning for Teens with Cancer Intervention on Sustainability of Congruence About End-of-Life Treatment Preferences: A Randomized Clinical Trial.

Importance: The effect of pediatric advance care planning (pACP) on the sustainability of end-of-life treatment preference congruence between adolescents with cancer and their families has not been examined. Objective: To evaluate the longitudinal efficacy of the Family-Centered Advance Care Planning for Teens with Cancer (FACE-TC) intervention to sustain adolescent-family congruence about end-of-life treatment preferences. Design, Setting, and Participants: This multisite, assessor-blinded, randomized clinical trial enrolled adolescents with cancer (aged 14-21 years) and their family members from 4 pediatric hospitals between July 16, 2016, and April 30, 2019. Participants were randomized 2:1 to FACE-TC (intervention group) or treatment as usual (control group) and underwent 5 follow-up visits over an 18-month postintervention period. Intention-to-treat analyses were conducted from March 9, 2021, to April 14, 2022. Exposures: Adolescent-family dyads randomized to the FACE-TC group received 3 weekly 60-minute sessions consisting of the discussion and/or completion of the Lyon Family-Centered Advance Care Planning Survey (session 1), Respecting Choices Next Steps pACP conversation (session 2), and Five Wishes advance directive (session 3). Dyads in the control group received treatment as usual. Both groups received pACP information. Main Outcomes and Measures: Congruence was measured by completion of the Statement of Treatment Preferences (a document that discusses 4 hypothetical clinical situations and treatment choices for each scenario: continue all treatments, stop all efforts to keep me alive, or unsure) after session 2 (time 1) and at 3 months (time 2), 6 months (time 3), 12 months (time 4), and 18 months (time 5) after intervention. The influence of FACE-TC on the trajectory of congruence over time was measured by longitudinal latent class analysis. Results: A total of 252 participants (126 adolescent-family dyads) were randomized. Adolescents (mean [SD] age, 17 [1.9] years) and family members (mean [SD] age, 46 [8.3] years) were predominantly female (72 [57%] and 104 [83%]) and White individuals (100 [79%] and 103 [82%]). There was an 83% (104 of 126) retention at the 18-month assessment. Two latent classes of congruence over time were identified: high-congruence latent class (69 of 116 [60%]) and low-congruence latent class (47 of 116 [41%]). The dyads in the FACE-TC group had a 3-fold odds of being in the high-congruence latent class (odds ratio [OR], 3.22; 95% CI, 1.09-9.57) compared with the control group. Statistically significant differences existed at 12 months (ß [SE] = 1.17 [0.55]; P = .03]) but not at 18 months (OR, 2.08; 95% CI, 0.92-4.69). In the high-congruence latent class, good agreement (agreement on 2 or 3 of 4 situations) increased over 12 months. White adolescents and families had significantly greater odds of congruence than a small population of American Indian or Alaska Native, Asian, Black or African American, Hispanic or Latino, or multiracial adolescents and families (OR, 3.97; 95% CI, 1.07-14.69). Conclusions and Relevance: Results of this trial showed that, for those who received the FACE-TC intervention, the families' knowledge of their adolescents' end-of-life treatment preferences was sustained for 1 year, suggesting yearly follow-up sessions. Race and ethnicity-based differences in the sustainability of this knowledge reflect a difference in the effect of the intervention and require further study. Trial Registration: ClinicalTrials.gov Identifier: NCT02693665.

An Intervention in Congruence for End-of-Life Treatment Preference: A Randomized Trial.

BACKGROUND AND OBJECTIVES: There is a gap in family knowledge of their adolescents' end-of-life (EOL) treatment preferences. We tested the efficacy of Family Centered Advance Care Planning for Teens with Cancer (FACE-TC) pediatric advance care planning (to increase congruence in EOL treatment preferences. METHODS: Adolescents with cancer/family dyads were randomized into a clinical trial from July 2016 to April 2019 at a 2:1 ratio: intervention (n = 83); control (n = 43) to either 3 weekly sessions of FACE-TC (Lyon Advance Care Planning Survey; Next Steps: Respecting Choices Interview; Five Wishes, advance directive) or treatment as usual (TAU). Statement of Treatment Preferences measured congruence. RESULTS: Adolescents' (n = 126) mean age was 16.9 years; 57% were female and 79% were White. FACE-TC dyads had greater overall agreement than TAU: high 34% vs 2%, moderate 52% vs 45%, low 14% vs 52%, and P < .0001. Significantly greater odds of congruence were found for FACE-TC dyads than TAU for 3 of 4 disease-specific scenarios: for example, "a long hospitalization with low chance of survival," 78% (57 of 73) vs 45% (19 of 42); odds ratio, 4.31 (95% confidence interval, 1.89-9.82). FACE-TC families were more likely to agree to stop some treatments. Intervention adolescents, 67% (48 of 73), wanted their families to do what is best at the time, whereas fewer TAU adolescents, 43% (18 of 42), gave families this leeway (P = .01). CONCLUSIONS: High-quality pediatric advance care planning enabled families to know their adolescents' EOL treatment preferences.

Operationalizing Ethical Guidance for Ventilator Allocation in Minnesota: Saving the Most Lives or Exacerbating Health Disparities?

A statewide working group in Minnesota created a ventilator allocation scoring system in anticipation of functioning under a Crisis Standards of Care declaration. The scoring system was intended for patients with and without coronavirus disease 2019. There was disagreement about whether the scoring system might exacerbate health disparities and about whether the score should include age. We measured the relationship of ventilator scores to in-hospital and 3-month mortality. We analyzed our findings in the context of ethical and legal guidance for the triage of scarce resources. DESIGN: Retrospective cohort study. SETTING: Multihospital within a single healthcare system. PATIENTS: Five-hundred four patients emergently intubated and admitted to the ICU. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: The Ventilator Allocation Score was positively associated with higher mortality (p < 0.0001). The 3-month mortality rate for patients with a score of 6 or higher was 96% (42/44 patients). Age was positively associated with mortality. The 3-month mortality rate for patients 80 and older with scores of 4 or greater was 93% (40/43 patients). Of patients assigned a score of 5, those with end stage renal disease had lower mortality than patients without end stage renal disease although the difference did not achieve statistical significance (n = 27; 25% vs 58%; p = 0.2). CONCLUSIONS: The Ventilator Allocation Score can accurately identify patients with high rates of short-term mortality. However, these high mortality patients only represent 27% of all the patients who died, limiting the utility of the score for allocation of scarce resources. The score may unfairly prioritize older patients and inadvertently exacerbate racial health disparities through the inclusion of specific comorbidities such as end stage renal disease. Triage frameworks that include age should be considered. Purposeful efforts must be taken to ensure that triage protocols do not perpetuate or exacerbate prevailing inequities. Further work on the allocation of scarce resources in critical care settings would benefit from consensus on the primary ethical objective.

The intersectionality of gender and poverty on symptom suffering among adolescents with cancer.

BACKGROUND: To determine if the intersectionality of gender and poverty is associated with health disparities among adolescents with cancer. We hypothesized unobserved latent classes of patients exist with respect to cancer-related symptoms; and class classification varies by gender-poverty combinations. PROCEDURE: Cross-sectional data were collected among adolescents with cancer and families (N = 126 dyads) at four tertiary pediatric hospitals. Adolescents were aged 14-21 years, English speaking, cancer diagnosis, not developmentally delayed, psychotic, homicidal, suicidal, or severely depressed. Latent class analysis and multinomial logit models were used for analysis. Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric symptom measures, Short forms, evaluated anxiety, depressive symptoms, pain interference, and fatigue. Family-reported household income used 2016 Federal Poverty Level (FPL) guidelines. RESULTS: Three distinct groups of patients were identified using PROMIS symptom patterns: High Distress-25%; High Physical/Low Psychological Distress-14%; and Low Distress-62%. Female adolescents living in households with incomes at or below the 2016 FPL had 30 times the odds of being classified in the High Distress class (higher probabilities of experiencing anxiety, depressive symptoms, pain interference, and fatigue) compared to those in the High Physical/Low Psychological Distress class (female and poverty: AOR = 30.27, 95% CI 1.23, 735.10), and this was statistically significant (ß = 3.41, 95% CI 0.21, 6.60; p = .04) but not compared to those in Low Distress. CONCLUSION: Adolescent females with cancer with households in poverty had significantly greater odds of experiencing high symptom distress, compared to those with high physical but low psychological distress. More comprehensive screening and intervention, as needed, may decrease disparities.

Pediatric Advance Care Planning and Families' Positive Caregiving Appraisals: An RCT.

BACKGROUND AND OBJECTIVES: Little is known about how families respond to pediatric advance care planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families. We examined the effect of family centered pediatric advance care planning intervention for teens with cancer (FACE-TC) advance care planning on families' appraisals of their caregiving, distress, and strain. METHODS: In a randomized clinical trial with adolescents with cancer and their families conducted from July 2016 to April 2019 in 4 tertiary pediatric hospitals, adolescents and family dyads were randomly assigned at a 2:1 intervention/control ratio to either the 3 weekly sessions of FACE-TC (Advance Care Planning Survey; Next Steps: Respecting Choices; Five Wishes) or treatment-as-usual. Only the family member was included in this study. Generalized estimating equations assessed the intervention effect measured by Family Appraisal of Caregiving Questionnaire. RESULTS: Families' (n = 126) mean age was 46 years; 83% were female, and 82% were white. FACE-TC families significantly increased positive caregiving appraisals at 3-months postintervention, compared with those in the control group (ß = .35; 95% confidence interval [CI] 0.19 to 0.36; P = .03). No significant differences were found between groups for strain (ß = -.14; 95% CI = -0.42 to 0.15; P = .35) or distress (ß = -.01; CI = -0.35 to 0.32; P = .93). CONCLUSIONS: Families benefited from participation in FACE-TC, which resulted in positive appraisals of their caregiving for their child with cancer, while not significantly burdening them with distress or strain. Clinicians can be assured of the tolerability of this family-supported model.

"Living life as if I never had cancer": A study of the meaning of living well in adolescents and young adults who have experienced cancer.

BACKGROUND: Cancer diagnoses pose challenges to adolescents' and young adults' (AYA) physical, mental, and emotional health, and developmental tasks. In order for AYAs, caregivers, clinicians, and other collaborators to optimize health outcomes (coproduction of health), understanding what living well means for AYAs who have experienced cancer is necessary. The objective was to develop an empirical definition of "living well" for AYAs who have experienced cancer to broadly understand AYA values and priorities. This definition may ultimately guide future conversations between caregivers and AYAs, eliciting thorough, personal definitions of living well from individual AYAs. Such conversations may enhance AYA participation in coproducing their health. PROCEDURE: Qualitative analysis using a phenomenological approach of N = 30 structured Respecting Choices interviews conducted with AYAs (14-21 years; mean 84.2 [SD 69] months postcancer diagnosis with 21% on active treatment) from four tertiary pediatric hospitals in the context of a primary study of a pediatric advance care planning intervention trial. RESULTS: AYAs who have experienced cancer conceptualized "living well" as maintaining physical, mental, and emotional health, as well as engaging in purposeful, age-appropriate activities with people important to them. Living well had three components: living mindfully, living an identity as a healthy AYA, and spending time with friends and family. CONCLUSIONS: Conversations with AYAs who have experienced cancer elicited rich, complex concepts of "living well." Provider initiation of discussions about living well may facilitate personalized goals of care conversations. This study may serve as the basis to design and prototype future clinical interventions to enhance AYA engagement.

Association of Religious and Spiritual Factors With Patient-Reported Outcomes of Anxiety, Depressive Symptoms, Fatigue, and Pain Interference Among Adolescents and Young Adults With Cancer.

Importance: The associations of spiritual and religious factors with patient-reported outcomes among adolescents with cancer are unknown. Objective: To model the association of spiritual and religious constructs with patient-reported outcomes of anxiety, depressive symptoms, fatigue, and pain interference. Design, Setting, and Participants: This cross-sectional study used baseline data, collected from 2016 to 2019, from an ongoing 5-year randomized clinical trial being conducted at 4 tertiary-referral pediatric medical centers in the US. A total of 366 adolescents were eligible for the clinical trial, and 126 were randomized; participants had to be aged 14 to 21 years at enrollment and be diagnosed with any form of cancer. Exclusion criteria included developmental delay, scoring greater than 26 on the Beck Depression Inventory II, non-English speaking, or unaware of cancer diagnosis. Exposures: Spiritual experiences, values, and beliefs; religious practices; and overall self-ranking of spirituality's importance. Main Outcomes and Measures: Variables were taken from the Brief Multidimensional Measurement of Religiousness/Spirituality (ie, feeling God's presence, daily prayer, religious service attendance, being very religious, and being very spiritual) and the spiritual well-being subscales of the Functional Assessment of Chronic Illness Therapy (meaning/peace and faith). Predefined outcome variables were anxiety, depressive symptoms, fatigue, and pain interference from Patient-Reported Outcomes Measurement Information System pediatric measures. Results: A total of 126 individuals participated (72 [57.1%] female participants; 100 [79.4%] white participants; mean [SD] age, 16.9 [1.9] years). Structural equation modeling showed that meaning and peace were inversely associated with anxiety (ß = -7.94; 95% CI, -12.88 to -4.12), depressive symptoms (ß = -10.49; 95% CI, -15.92 to -6.50), and fatigue (ß = -8.90; 95% CI, -15.34 to -3.61). Feeling God's presence daily was indirectly associated with anxiety (ß = -3.37; 95% CI, -6.82 to -0.95), depressive symptoms (ß = -4.50; 95% CI, -8.51 to -1.40), and fatigue (ß = -3.73; 95% CI, -8.03 to -0.90) through meaning and peace. Considering oneself very religious was indirectly associated with anxiety (ß = -2.81; 95% CI, -6.06 to -0.45), depressive symptoms (ß = -3.787; 95% CI, -7.68 to -0.61), and fatigue (ß = -3.11, 95% CI, -7.31 to -0.40) through meaning and peace. Considering oneself very spiritual was indirectly associated with anxiety (ß = 2.11; 95% CI, 0.05 to 4.95) and depression (ß = 2.8, 95% CI, 0.07 to 6.29) through meaning and peace. No associations were found between spiritual scales and pain interference. Conclusions and Relevance: In this study, multiple facets of spirituality and religiousness were associated with anxiety, depression, and fatigue, all of which were indirectly associated with the participant's sense of meaning and peace, which is a modifiable process. Although these results do not establish a causal direction, they do suggest palliative interventions addressing meaning-making, possibly including a spiritual or religious dimension, as a novel focus for intervention development.

Congruence Gaps Between Adolescents With Cancer and Their Families Regarding Values, Goals, and Beliefs About End-of-Life Care.

Importance: Lack of pediatric advance care planning has been associated with poor communication, increased hospitalization, poor quality of life, and legal actions. Clinicians presume that families understand adolescents' treatment preferences for end-of-life care. Objective: To examine patient-reported end-of-life values and needs of adolescents with cancer and congruence with their families' understanding of these needs. Design, Setting, and Participants: This cross-sectional survey was conducted among adolescent-family dyads from July 16, 2016, to April 30, 2019, at 4 tertiary care pediatric US hospitals. Participants included 80 adolescent-family dyads (160 participants) within a larger study facilitating pediatric advance care planning. Adolescent eligibility criteria included being aged 14 to 21 years, English speaking, being diagnosed with cancer at any stage, and knowing their diagnosis. Family included legal guardians for minors or chosen surrogate decision-makers for those aged 18 years or older. Data analysis was performed from April 2019 to November 2019. Exposure: Session 1 of the 3-session Family Centered Pediatric Advance Care Planning for Teens With Cancer intervention. Main Outcomes and Measures: The main outcome was congruence between adolescents with cancer and their families regarding adolescents' values, goals, and beliefs about end-of-life care. Prevalence-adjusted and bias-adjusted κ (PABAK) values were used to measure congruence on the Lyon Advance Care Planning Survey-Revised (Patient and Surrogate versions). Results: A total of 80 adolescent-family dyads (160 participants) were randomized to the intervention group in the original trial. Among the adolescents, 44 (55.0%) were female and 60 (75.0%) were white, with a mean (SD) age of 16.9 (1.8) years. Among family members, 66 (82.5%) were female and 65 (81.3%) were white, with a mean (SD) age of 45.3 (8.3) years. Family members' understanding of their adolescent's beliefs about the best time bring up end-of-life decisions was poor: 86% of adolescents wanted early timing (before getting sick, while healthy, when first diagnosed, when first sick from a life-threatening illness, or all of the above), but only 39% of families knew this (PABAK, 0.18). Families' understanding of what was important to their adolescents when dealing with their own dying was excellent for wanting honest answers from their physician (PABAK, 0.95) and understanding treatment choices (PABAK, 0.95) but poor for dying a natural death (PABAK, 0.18) and being off machines that extend life, if dying (PABAK, 0). Conclusions and Relevance: Many families had a poor understanding of their adolescent's values regarding their own end-of-life care, such as when to initiate end-of-life conversations and preference for being off machines that extend life. Pediatric advance care planning could minimize these misunderstandings with the potential for a substantial impact on quality of care.

"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.

Lasting Legacy: Maternal Perspectives of Perinatal Palliative Care.

BACKGROUND: Many of the leading causes of infant mortality are diagnosed prenatally, presenting providers with the ability to present perinatal palliative care planning as an option. OBJECTIVE: Our study adds to the literature both by describing infant interaction with the health care system and by gaining deeper understanding of the maternal experience after being offered perinatal palliative care. METHODS: The study was conducted at a public university-based medical center in the Midwest. Phase 1 consisted of a retrospective review of electronic medical records of 27 mother-infant pairs offered perinatal palliative care, 18 of whom elected to develop a perinatal palliative care. Phase 2 consisted of a focus group and interviews of seven of the mothers. RESULTS: In the initial phase of this study, results revealed differences regarding the infant's end-of-life trajectory, including location of death, number of invasive procedures, and death in the setting of withholding versus withdrawing life-sustaining treatment. Highlighting that without a perinatal palliative care plan in place, the default treatment for infants with prenatally diagnosed life-limiting conditions is likely to be invasive and painful with often times minimal likelihood of long-term survival. Analysis of interview and focus group data revealed three themes: care, choice, and legacy. CONCLUSION: The authors used their experience with the health care system to draw implications for practice from the focus group and interview data, which care can serve to promote women feeling cared for and cared about, as well as promote opportunities for hope during a fragile pregnancy.

Considerations in Caring for Adult Patients in the Pediatric Intensive Care Unit.

Pediatric providers are caring for a growing number of adults in pediatric in-patient settings due to the increasing survival of patients with historically pediatric disease. Beyond understanding the unique medical management of these patients, adult-specific ethical and legal issues must be considered. The aim of this article is to discuss four major issues unique to caring for adult patients: advance directives, confidentiality, decision-making capacity, and palliative care. To our knowledge, no literature exists focusing on the consideration of these specific concepts for the pediatric provider. An understanding of these issues in caring for adult patients in pediatric settings will enable pediatric practitioners to better consider patient autonomy, protect patient privacy, and ensure appropriate decision-making in critically ill patients.

The Impact of Advance Directives on End-of-Life Care for Adolescents and Young Adults Undergoing Hematopoietic Stem Cell Transplant.

BACKGROUND: Little is known about the role of advance directives (AD) in end-of-life (EOL) care for adolescents and young adults (AYA) undergoing hematopoietic stem cell transplant (HSCT). OBJECTIVE: The study objective was to describe the frequency, type, and influence of AD on the use of life-sustaining treatment (LST) in AYA patients undergoing HSCT. METHODS: We performed a retrospective chart review of 96 patients aged 14-26 undergoing HSCT between April 2011 and January 2015 at the University of Minnesota. LST was defined as the use of positive pressure ventilation (PPV), dialysis, or CPR. RESULTS: Of the 96 patients, survival was 72.9%, and 23% had an AD. Of the 26 patients who died, 13 (50%) had an AD. Among the 19 patients who died in the ICU, there was no significant difference in PPV, dialysis, withholding or withdrawing of LST, or timing of do not resuscitate (DNR) orders between those with ADs preferring LST (n = 5), those naming proxies only (n = 4), and those without ADs (n = 10). Patients with ADs expressing preference for LST were significantly more likely to receive CPR than those with proxies or those without ADs (p = 0.02). CONCLUSION: A minority of AYA patients undergoing HSCT had ADs. Patients received care that was strongly associated with their preferences. With the exception of CPR, the use of LST did not differ between those with ADs and those without.

Ethical challenges with the advancement of hematopoietic stem cell transplant.

Advancements in medical science and pediatric intensive care have significantly improved outcomes for children undergoing hematopoietic stem cell transplantation (HSCT). Critical care management of HSCT patients requires pediatric intensivists to deal with ethical issues including aggressiveness of care and futility, limiting treatment, shared decision-making with families of critically ill children, and decision-making in the context of multi-disciplinary management of complex patients. This paper will discuss the fundamental ethical principles to enable pediatric intensivists to address questions of medical decision-making. Medical futility will be explored and strategies for dealing with both the practical and emotional implications of this for the pediatric intensivist will be addressed. Another important issue related to critical care of the HSCT patient is establishing goals of care, specifically related to end of life care decisions. A framework for end of life communication with families will be provided. Finally, this paper will discuss the potential conflicts resulting from multi-disciplinary care of the HSCT patient in the pediatric intensive care unit. As medical management of the HSCT patient continues to evolve, awareness of the ethical issues surrounding their care is important for both patient and provider.

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.

Home extubation by a pediatric critical care team: providing a compassionate death outside the pediatric intensive care unit.

Our objective is to present a case report of home extubation by a pediatric intensive care team in a terminally ill pediatric patient. Literature relevant to home extubation will be reviewed. The design is a case report. Home extubation of critically ill children may offer significant benefits and an alternative end-of-life option for families. Allowing a child to die at home creates an opportunity for families to maintain privacy and to better address their spiritual and cultural needs at the time of death. Before offering home extubation to families, hospitals should prepare families for the experience and address the availability of staff to comfort parents and provide bereavement support. Medicolegal as well as cost issues for the hospital related to home extubation should be explored before the implementation of a program of this nature. This case illustrates that home extubation is a creative, compassionate, and culturally sensitive alternative to hospital-based end-of-life care involving the pediatric intensivist, transport teams, and primary care physicians.