First name
Maureen
Middle name
E
Last name
Lyon

Title

Challenges and Priorities for Pediatric Palliative Care Research in the United States and Similar Practice Settings: Report from a Pediatric Palliative Care Research Network Workshop.

Year of Publication

2019

Date Published

2019 Aug 21

ISSN Number

1873-6513

Abstract

<p><strong>CONTEXT: </strong>In order to dramatically advance the evidence base for pediatric palliative care (PPC) interventions, practices, and programs in the United States and similar practice settings, the field needs to better understand the challenges and opportunities for rigorous scholarship.</p>

<p><strong>OBJECTIVES: </strong>The Pediatric Palliative Care Research Network conducted a workshop to clarify challenges and identify key priorities.</p>

<p><strong>METHODS: </strong>The workshop focused on PPC research topics and methods, including: outcomes measurement, qualitative inquiry, analyses of "big data," prospective collection of research data, case series and cohort studies, and intervention trials, with synthesizing summary and follow-up discussions. All attendees reviewed and approved the final report.</p>

<p><strong>RESULTS: </strong>Five common challenges were identified: patient diversity and small population size; interdependencies and dynamic interactions between child, family members, and disease processes over time; outcomes and measurement; workforce and infrastructure limitations; and presumed burden of PPC research upon participants. Seven priorities emerged: bolster training and development of PPC investigators; develop core resources; advance symptom measurement (and measurements of other exposures and outcomes); improve symptom management and quality of life interventions; improve communication, elicitation of goals of care, and decision-making; understand family impact and facilitate or improve family adaptation and coping; and analyze and improve systems of care, policy, and education.</p>

<p><strong>CONCLUSION: </strong>These challenges and priorities identify key research areas that can guide individual investigators and research funders to advance the field.</p>

DOI

10.1016/j.jpainsymman.2019.08.011

Alternate Title

J Pain Symptom Manage

PMID

31445136

Title

Ethics, Emotions, and the Skills of Talking About Progressing Disease With Terminally Ill Adolescents: A Review.

Year of Publication

2016

Number of Pages

1216-23

Date Published

2016 Dec

ISSN Number

2168-6211

Abstract

<p><strong>Importance: </strong>For clinicians caring for adolescent patients living with progressive, life-threatening illness, discussions regarding prognosis, goals of care, and treatment options can be extremely challenging. While clinicians should respect and help to facilitate adolescents' emerging autonomy, they often must also work with parents' wishes to protect patients from the emotional distress of hearing bad news.</p>

<p><strong>Observations: </strong>We reviewed the ethical justifications for and against truth-telling, and we considered the published ethical and practice guidance, as well as the perspectives of patients, parents, and clinicians involved in these cases. We also explored particular challenges with respect to the cultural context, timing, and content of conversations at the end of adolescents' lives. In most cases, clinicians should gently but persistently engage adolescents directly in conversations about their disease prognosis and corresponding hopes, worries, and goals. These conversations need to occur multiple times, allowing significant time in each discussion for exploration of patient and family values. While truth-telling does not cause the types of harm that parents and clinicians may fear, discussing this kind of difficult news is almost always emotionally distressing. We suggest some "phrases that help" when clinicians strive to deepen understanding and facilitate difficult conversations with adolescents, parents, and other family members.</p>

<p><strong>Conclusions and Relevance: </strong>The pediatrician's opportunities to engage in difficult conversations about poor prognosis may be rare, but such conversations can be crucial. These discussions affect how patients live at the end of their lives, how they die, and how their families go on. Improved understanding of basic principles of communication, as well as augmented understanding of patient, family, and clinician perspectives may better enable us to navigate these important conversations.</p>

DOI

10.1001/jamapediatrics.2016.2142

Alternate Title

JAMA Pediatr

PMID

27749945

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