First name
Jennifer
Middle name
K
Last name
Walter

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

Title

COVID-19: Advancing Empirical Bioethics Research.

Year of Publication

2020

Number of Pages

1-3

Date Published

2020 Jul 13

ISSN Number

2329-4523

Abstract

<p>Research is essential to advance knowledge of emerging and reemerging infectious diseases and to improve the effectiveness of therapies and the quality of care for all patients. Indeed, with more than 12 million individuals infected and nearly 560,000 deaths worldwide at the beginning of July 2020, research is critical to identify and minimize the devastating effects of SARS-CoV-2 and COVID-19 in both the adult and pediatric populations. The morbidity and mortality statistics alone demand immediate attention. Research on a vaccine and on life-saving therapeutics, including antiviral regimens, is the highest priority currently. And, there is still much we need to learn about the pathogenicity of the virus and the variations in its severity and clinical course.</p>

DOI

10.1080/23294515.2020.1785043

Alternate Title

AJOB Empir Bioeth

PMID

32657635

Title

A conceptual model of barriers and facilitators to primary clinical teams requesting pediatric palliative care consultation based upon a narrative review.

Year of Publication

2019

Number of Pages

116

Date Published

2019 Dec 21

ISSN Number

1472-684X

Abstract

<p><strong>BACKGROUND: </strong>Despite evidence that referral to pediatric palliative care reduces suffering and improves quality of life for patients and families, many clinicians delay referral until the end of life. The purpose of this article is to provide a conceptual model for why clinical teams delay discussing palliative care with parents.</p>

<p><strong>DISCUSSION: </strong>Building on a prior model of parent regoaling and relevant research literature, we argue for a conceptual model of the challenges and facilitators a clinical team might face in shifting from a restorative-focused treatment plan to a plan that includes palliative aspects, resulting in a subspecialty palliative care referral. Like patients and families, clinicians and clinical teams may recognize that a seriously ill patient would benefit from palliative care and shift from a restorative mindset to a palliative approach. We call this transition "clinician regoaling". Clinicians may experience inhibitors and facilitators to this transition at both the individual and team level which influence the clinicians' willingness to consult subspecialty palliative care. The 8 inhibitors to team level regoaling include: 1) team challenges due to hierarchy, 2) avoidance of criticizing colleagues, 3) structural communication challenges, 4) group norms in favor of restorative goals, 5) diffusion of responsibility, 6) inhibited expression of sorrow, 7) lack of social support, 8) reinforcement of labeling and conflict. The 6 facilitators of team regoaling include: 1) processes to build a shared mental model, 2) mutual trust to encourage dissent, 3) anticipating conflict and team problem solving, 4) processes for reevaluation of goals, 5) sharing serious news as a team, 6) team flexibility.</p>

<p><strong>CONCLUSIONS: </strong>Recognizing potential team level inhibitors to transitioning to palliative care can help clinicians develop strategies for making the transition more effectively when appropriate.</p>

DOI

10.1186/s12904-019-0504-8

Alternate Title

BMC Palliat Care

PMID

31864331

Title

Pediatric Chronic Critical Illness: Let Us Focus on the Big Picture.

Year of Publication

2019

Number of Pages

1206-1207

Date Published

2019 Dec

ISSN Number

1529-7535

DOI

10.1097/PCC.0000000000002154

Alternate Title

Pediatr Crit Care Med

PMID

31804446

Title

Seven Types of Uncertainty when Clinicians Care for Pediatric Patients with Advanced Cancer.

Year of Publication

2019

Date Published

2019 Aug 16

ISSN Number

1873-6513

Abstract

<p><strong>CONTEXT: </strong>Clinicians deciding whether to refer a patient or family to specialty palliative care report facing high levels of uncertainty. Most research on medical uncertainty has focused on prognostic uncertainty. As part of a pediatric palliative referral intervention for oncology teams we explored how uncertainty might influence palliative care referrals.</p>

<p><strong>OBJECTIVES: </strong>To describe distinct meanings of the term "uncertainty" that emerged during the qualitative evaluation of the development and implementation of an intervention to help oncologists overcome barriers to palliative care referrals.</p>

<p><strong>METHODS: </strong>We conducted a phenomenological qualitative analysis of "uncertainty" as experienced and described by interdisciplinary pediatric oncology team members in discussions, group activities and semistructured interviews regarding the introduction of palliative care.</p>

<p><strong>RESULTS: </strong>We found that clinicians caring for patients with advanced cancer confront seven broad categories of uncertainty: prognostic, informational, individual, communication, relational, collegial, and inter-institutional. Each of these kinds of uncertainty can contribute to delays in referring patients to palliative care.</p>

<p><strong>CONCLUSION: </strong>Various types of uncertainty arise in the care of pediatric patients with advanced cancer. To manage these forms of uncertainty, providers need to develop strategies and techniques to handle professionally challenging situations, communicate bad news, manage difficult interactions with families and colleagues, and collaborate with other organizations.</p>

DOI

10.1016/j.jpainsymman.2019.08.010

Alternate Title

J Pain Symptom Manage

PMID

31425822

Title

Pediatric Resident Experience Caring for Children at the End of Life in a Children's Hospital.

Year of Publication

2019

Date Published

2019 Jul 31

ISSN Number

1876-2867

Abstract

<p><strong>OBJECTIVES: </strong>Pediatric residents are expected to be competent in end of life (EOL) care. We aimed to quantify pediatric resident exposure to patient deaths, and the context of these exposures.</p>

<p><strong>METHODS: </strong>Retrospective chart review of all deceased patients at one children's hospital over three years collected patient demographics, time and location of death. Mode of death was determined after chart review. Each death was cross-referenced with pediatric resident call schedules to determine residents involved within 48 hours of death. Descriptive statistics are presented.</p>

<p><strong>RESULTS: </strong>Of 579 patients who died during the study period, 46% had resident involvement. Most deaths occurred in the NICU (30% of all deaths) however, resident exposure to EOL care most commonly occurred in the PICU (52% of resident exposures) and were after withdrawals of life-sustaining therapy (41%), followed by non-escalation (31%) and failed resuscitation (15%). During their post-graduate year (PGY)-1, &lt;1% of residents encountered a patient death. During PGY-2 and PGY-3, 96% and 78%, respectively, of residents encountered at least one death. During PGY-2, residents encountered a mean of 3.5 patient deaths (range 0-12); during PGY-3, residents encountered a mean of 1.4 deaths (range 0-5). Residents observed for their full 3-year residency encountered a mean of 5.6 deaths (range 2-10).</p>

<p><strong>CONCLUSIONS: </strong>Pediatric residents have limited but variable exposure to EOL care, with most exposures in the ICU after withdrawal of life-sustaining technology. Educators should consider how to optimize EOL education with limited clinical exposure, and design resident support and education with these variable exposures in mind.</p>

DOI

10.1016/j.acap.2019.07.008

Alternate Title

Acad Pediatr

PMID

31376579

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