First name
Jennifer
Middle name
K
Last name
Walter

Title

Demand and Supply: Association between Pediatric Ethics Consultation Volume and Protected Time for Ethics Work.

Year of Publication

2022

Number of Pages

1-8

Date Published

12/2022

ISSN Number

2329-4523

Abstract

BACKGROUND: Despite national increase in pediatric ethics consultation volume over the past decade, protected time and resources for healthcare ethics consultancy work has lagged.

METHODS: Correlation study investigating potential associations between ethics consult volume reported by recent national survey of consultants at children's hospitals and five programmatic domains.

RESULTS: 104 children's hospitals in 45 states plus Washington DC were included. There was not a statistically significant association between pediatric ethics consult volume and hospital size, rurality of patient population, or number of consultants. Academically-affiliated children's hospitals had fewer ethics consults compared to nonacademically affiliated. Association was found between full-time equivalent (FTE) hours and number of ethics consults (p < 0.0001). Spearman rank correlation between ethics consult volume and FTE was 0.5.

CONCLUSIONS: While the results of this study should be interpreted with caution, investment in protected time for ethics consultancy work may translate into increased volume of pediatric ethics consults.

DOI

10.1080/23294515.2022.2160512

Alternate Title

AJOB Empir Bioeth

PMID

36574230

Title

Group Concept Mapping Conceptualizes High-Quality Care for Long-Stay Pediatric Intensive Care Unit Patients and Families.

Year of Publication

2023

Number of Pages

48-55.e1

Date Published

01/2023

ISSN Number

1097-6833

Abstract

OBJECTIVE: To describe and conceptualize high-quality care for long-stay pediatric intensive care unit (PICU) patients using group concept mapping (GCM).

STUDY DESIGN: We convened an expert panel to elucidate domains of high-quality care for this growing patient population for which transitory care models fail to meet their needs. Thirty-one healthcare professionals and 7 parents of patients with previous prolonged PICU hospitalizations comprised a diverse, interprofessional multidisciplinary panel. Participants completed the prompt "For PICU patients and families experiencing prolonged lengths of stay, high quality care from the medical team includes ______", with unlimited free text responses. Responses were synthesized into individual statements, then panelists sorted them by idea similarity and rated them by perceived importance. Statement analysis using GCM software through GroupWisdom generated nonoverlapping clusters representing domains of high-quality care.

RESULTS: Participants submitted 265 prompt responses representing 313 unique ideas, resulting in 78 final statements for sorting and rating. The resultant cluster map best representing the data contained 8 domains: (1) Family-Centered Care and Shared Decision Making, (2) Humanizing the Patient, (3) Clinician Supports and Resources, (4) Multidisciplinary Coordination of Care, (5) Family Well-Being, (6) Anticipatory Guidance and Care Planning, (7) Communication, and (8) Continuity of Care.

CONCLUSIONS: GCM empowered a panel of healthcare professionals and parents to explicitly describe and conceptualize high-quality care for patients and families experiencing prolonged PICU stays. This information will aid the effort to address shortcomings of transitory PICU care models.

DOI

10.1016/j.jpeds.2022.08.007

Alternate Title

J Pediatr

PMID

35973447

Title

The Accessibility of Inpatient Pediatric Ethics Consultation Services to Patient Caregivers.

Year of Publication

2022

Number of Pages

e291-e294

Date Published

09/2022

ISSN Number

2154-1671

Abstract

BACKGROUND: Ethics consultation services (ECS) support clinical decision-making when there are values conflicts. Accessibility to ECS by patients and families is required to benefit from the service. Multiple national guidelines encourage ready availability of ECS to all stakeholders including patients and families.

METHODS: All facilities registered with the Children's Hospital Association (n = 190) were contacted using a protocol modeled after an adult ethics consultation practice study. After an online search to identify an ethics contact, calls were made to hospital operators, and each transfer was documented as well as time to ECS contact. If no contact was identified on progression through the call protocol or on completion of the call pathway on 3 occasions each spaced by 1 week, the ECS was labeled "unreached."

RESULTS: Only 36 (19%) ECS contacts were identified via online search with the remainder 154 (81%) requiring phone calls. Fewer than one-quarter of operators (n = 34/154, 22%) could identify a contact name or number for ECS. Thirty ECS (16%) remained unreachable after completion of the call pathway or 3 separate attempts. Successful ECS contact required an average of 2.9 attempts. Maximum call hold duration was 25 minutes. Callback times averaged 5.8 business days after voicemail.

CONCLUSIONS: This study revealed limited reachability of ECS. ECS should make their contact information available online and improve information available to operators.

DOI

10.1542/hpeds.2022-006662

Alternate Title

Hosp Pediatr

PMID

35934755

Title

The Accessibility of Inpatient Pediatric Ethics Consultation Services to Patient Caregivers.

Year of Publication

2022

Number of Pages

e291-e294

Date Published

08/2022

ISSN Number

2154-1671

Abstract

BACKGROUND: Ethics consultation services (ECS) support clinical decision-making when there are values conflicts. Accessibility to ECS by patients and families is required to benefit from the service. Multiple national guidelines encourage ready availability of ECS to all stakeholders including patients and families.

METHODS: All facilities registered with the Children's Hospital Association (n = 190) were contacted using a protocol modeled after an adult ethics consultation practice study. After an online search to identify an ethics contact, calls were made to hospital operators, and each transfer was documented as well as time to ECS contact. If no contact was identified on progression through the call protocol or on completion of the call pathway on 3 occasions each spaced by 1 week, the ECS was labeled "unreached."

RESULTS: Only 36 (19%) ECS contacts were identified via online search with the remainder 154 (81%) requiring phone calls. Fewer than one-quarter of operators (n = 34/154, 22%) could identify a contact name or number for ECS. Thirty ECS (16%) remained unreachable after completion of the call pathway or 3 separate attempts. Successful ECS contact required an average of 2.9 attempts. Maximum call hold duration was 25 minutes. Callback times averaged 5.8 business days after voicemail.

CONCLUSIONS: This study revealed limited reachability of ECS. ECS should make their contact information available online and improve information available to operators.

DOI

10.1542/hpeds.2022-006662

Alternate Title

Hosp Pediatr

PMID

35934755

Title

Group concept mapping conceptualizes high-quality care for long-stay pediatric intensive care unit patients and families.

Year of Publication

2022

Date Published

08/2022

ISSN Number

1097-6833

Abstract

OBJECTIVE: To describe and conceptualize high-quality care for long-stay pediatric intensive care unit (PICU) patients using group concept mapping (GCM).

STUDY DESIGN: We convened an expert panel to elucidate domains of high-quality care for this growing patient population for which transitory care models fail to meet their needs. Thirty-one healthcare professionals and 7 parents of patients with previous prolonged PICU hospitalizations comprised a diverse, interprofessional multidisciplinary panel. Participants completed the prompt "For PICU patients and families experiencing prolonged lengths of stay, high quality care from the medical team includes ______", with unlimited free text responses. Responses were synthesized into individual statements, then panelists sorted them by idea similarity and rated them by perceived importance. Statement analysis using GCM software through GroupWisdom generated nonoverlapping clusters representing domains of high-quality care.

RESULTS: Participants submitted 265 prompt responses representing 313 unique ideas, resulting in 78 final statements for sorting and rating. The resultant cluster map best representing the data contained 8 domains: (1) Family-Centered Care and Shared Decision Making, (2) Humanizing the Patient, (3) Clinician Supports and Resources, (4) Multidisciplinary Coordination of Care, (5) Family Well-Being, (6) Anticipatory Guidance and Care Planning, (7) Communication, and (8) Continuity of Care.

CONCLUSIONS: GCM empowered a panel of healthcare professionals and parents to explicitly describe and conceptualize high-quality care for patients and families experiencing prolonged PICU stays. This information will aid the effort to address shortcomings of transitory PICU care models.

DOI

10.1016/j.jpeds.2022.08.007

Alternate Title

J Pediatr

PMID

35973447

Title

Intervention Codesign in the Pediatric Cardiac Intensive Care Unit to Improve Family Meetings.

Year of Publication

2022

Date Published

2022 Mar 23

ISSN Number

1873-6513

Abstract

<p><strong>CONTEXT: </strong>Family meetings are encouraged in the pediatric cardiac intensive care unit (CICU) with the expectation of supporting parental shared decision-making (SDM). However, they often fall short of this goal. Additionally, interprofessional team and family meetings are dominated by input from physicians, under-utilizing the skillset of the full clinical team.</p>

<p><strong>OBJECTIVES: </strong>1) To determine feasibility of a codesign process to optimize the preparation of the interprofessional team and parents for conducting SDM-oriented family meetings in the CICU, and 2) to describe the resulting elements of the intervention including new support documents for the team and family to prepare for the meeting, team member roles in the meeting, and optimization of communication skills.</p>

<p><strong>METHODS: </strong>Experience-based codesign was used with CICU clinicians and parents of children hospitalized in the CICU to develop an intervention at a single institution. Sessions were audio recorded and transcribed and analyzed using modified grounded theory. Participants were surveyed about their engagement in the codesign process to assess feasibility.</p>

<p><strong>RESULTS: </strong>Fifteen professionals and 6 parents enrolled in the codesign and endorsed engagement in the process and importance of the intervention elements. Participants identified the benefit of complementary parent and team preparation for family meetings noting 5 distinct types of meetings that occurred frequently. Documents, processes, and skills training were developed to improve interprofessional teamwork regarding shared decision making and support of parents in family meetings.</p>

<p><strong>CONCLUSION: </strong>A codesign of an intervention with clinicians and parents in the CICU is a feasible and resulted in an intervention with broad support among clinicians in the CICU.</p>

DOI

10.1016/j.jpainsymman.2022.03.010

Alternate Title

J Pain Symptom Manage

PMID

35339610

Title

Disability and the Goods of Life.

Year of Publication

2021

Number of Pages

704-728

Date Published

2021 Dec 02

ISSN Number

1744-5019

Abstract

<p>The so-called Disability Paradox arises from the apparent tension between the popular view that disability leads to low well-being and the relatively high life-satisfaction reports of disabled people. Our aim in this essay is to make some progress toward dissolving this alleged paradox by exploring the relationship between disability and various "goods of life"-that is, components of a life that typically make a person's life go better for them. We focus on four widely recognized goods of life (happiness, rewarding relationships, knowledge, achievement) and four common types of disability (sensory, mobility, intellectual, and social) and systematically examine the extent to which the four disability types are in principle compatible with obtaining the four goods of life. Our findings suggest that there is a high degree of compatibility. This undermines the widespread view that disabilities, by their very nature, substantially limit a person's ability to access the goods of life, and it provides some guidance on how to dissolve the Disability Paradox.</p>

DOI

10.1093/jmp/jhab025

Alternate Title

J Med Philos

PMID

34865061

Title

Top Ten Tips Palliative Care Clinicians Should Know About Their Work's Intersection with Clinical Ethics.

Year of Publication

2021

Date Published

2021 Nov 22

ISSN Number

1557-7740

Abstract

<p>Palliative care (PC) subspecialists and clinical ethics consultants often engage in parallel work, as both function primarily as interprofessional consultancy services called upon in complex clinical scenarios and challenging circumstances. Both practices utilize active listening, goals-based communication, conflict mediation or mitigation, and values explorations as care modalities. In this set of tips created by an interprofessional team of ethicists, intensivists, a surgeon, an attorney, and pediatric and adult PC nurses and physicians, we aim to describe some paradigmatic clinical challenges for which partnership may improve collaborative, comprehensive care.</p>

DOI

10.1089/jpm.2021.0521

Alternate Title

J Palliat Med

PMID

34807737

Title

An interprofessional team-based intervention to address barriers to initiating palliative care in pediatric oncology: a multiple-method evaluation of feasibility, acceptability, and impact.

Year of Publication

2021

Date Published

2021 Jun 18

ISSN Number

1873-6513

Abstract

<p><strong>CONTEXT: </strong>Many children with advanced cancer are not referred to palliative care despite both professional recommendations to do so and bereaved parental preference for earlier support from sub-specialty palliative care.</p>

<p><strong>OBJECTIVES: </strong>To assess the feasibility, acceptability, and impact of an adaptive intervention to address individual and team-level barriers to specialty palliative care referrals.</p>

<p><strong>METHODS: </strong>A multiple-method approach assessed feasibility and acceptability among clinicians from pediatric oncology teams at a single institution. Quantitative measures of comfort with palliative care consultations, team cohesion, and team collaboration were conducted before and after the intervention. Number of palliative care consults were examined before, during, and after sessions. Intervention satisfaction surveys and qualitative interviews were conducted after the intervention.</p>

<p><strong>RESULTS: </strong>Twenty-six team members (90% of consented) attended at least one intervention session with 20 (69%) participants completing 75% or more sessions. The intervention was modified in response to participant feedback. After the intervention, participants reported greater team cohesion, comfort discussing palliative care consultation, team collaboration, process satisfaction, and decision satisfaction. Participants agreed that the training was useful, effective, helpful, and worthwhile, that they would use the skills, and that they would recommend the training to other providers. The numbers of palliative care consults increased before intervention sessions were conducted, but did not significantly change during or after the sessions. In the interviews, participants reported overall favorably regarding the intervention with some participants reporting changes in practice.</p>

<p><strong>CONCLUSION: </strong>An adaptive intervention to reduce barriers to initiating palliative care for pediatric oncology teams is feasible and acceptable.</p>

DOI

10.1016/j.jpainsymman.2021.06.008

Alternate Title

J Pain Symptom Manage

PMID

34153461

Title

Relational, Emotional, and Pragmatic Attributes of Ethics Consultations at a Children's Hospital.

Year of Publication

2021

Date Published

2021 Mar 05

ISSN Number

1098-4275

Abstract

<p><strong>BACKGROUND: </strong>Pediatric ethics consultations are important but understudied, with little known about consultations' contextual attributes, which may influence how ethically problematic situations are perceived and addressed.</p>

<p><strong>METHODS: </strong>We analyzed data regarding 245 pediatric clinical ethics consultations performed between 2013 and 2018 at a large children's hospital. Prespecified data elements included 17 core problematic issues that initiate consultations, 9 ethical considerations identified by the consultation service, and 7 relational, emotional, and pragmatic contextual attributes of the consultation. The main process measure was the cumulative consultation process, ranging from one-on-one discussions with the requestor, to meeting with the clinical team, separate meetings with the patient or family and the clinical team, or combined meeting with the patient or family and the clinical team.</p>

<p><strong>RESULTS: </strong>The most-prevalent core problematic issues were intensity or limitation of treatment (38.8%) and treatment adherence and refusal (31%). Common pertinent ethical considerations were best interest (79.2%), benefits versus harms of treatment (51%), and autonomy and decision-making (46.5%). A total of 39.2% of consults culminated with a meeting with the clinical team, 9.4% with separate meetings, and 8.2% with a meeting with all parties. Common contextual attributes were discord (43.3%), acknowledged dilemma (33.5%), and articulate disagreement (29.8%). In exploratory analyses, specific contextual attributes were associated with the core problematic issue that initiated the consultation and with how the consultative process culminated.</p>

<p><strong>CONCLUSIONS: </strong>Pediatric ethics consultations have contextual attributes that in exploratory analyses are associated with specific types of problems and, to a lesser degree, with the cumulative ethics consultation process.</p>

DOI

10.1542/peds.2020-1087

Alternate Title

Pediatrics

PMID

33674461

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