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Barriers to conducting advance care discussions for children with life-threatening conditions
Amy Durall1, David Zurakowski, Joanne Wolfe
1Department of Anesthesiology, Perioperative and Pain Medicine, Children’s Hospital Boston, Boston, Massachusetts 02115, USA. amy.durall@childrens.harvard.edu
Insights
Pediatric advance care discussions (ACD) are hindered by parent expectations and differing prognostic understanding. Addressing these barriers through education can improve clinician confidence and timely conversations for children with serious illnesses.
Area of Science:
- Pediatric Palliative Care
- Bioethics
- Clinical Communication
Background:
- Advance care discussions (ACD) are infrequent and often delayed for children with life-threatening conditions.
- Limited data exist on barriers to pediatric ACD compared to adult populations.
Purpose of the Study:
- To identify barriers encountered by clinicians when conducting advance care discussions for pediatric patients with life-threatening conditions.
Main Methods:
- A survey was administered to physicians and nurses in settings where advance care planning is common.
- Data were collected on clinician attitudes and behaviors regarding advance care discussions.
Main Results:
- The primary barriers identified were unrealistic parent expectations, discrepancies in prognosis understanding between clinicians and families, and lack of parent readiness.
- Nurses cited lack of importance and ethical considerations more than physicians, while physicians noted difficulty with communication.
- Specialty differences emerged, with Cardiac ICU providers more frequently reporting unrealistic clinician expectations and prognostic understanding gaps.
Conclusions:
- Clinicians perceive parental factors, including prognostic understanding and attitudes, as significant barriers to pediatric advance care discussions.
- Educational interventions targeting clinician knowledge, attitudes, and communication skills are recommended to overcome these perceived obstacles.
Background And Objective:
Advance care discussions (ACD) occur infrequently or are initiated late in the course of illness. Although data exist regarding barriers to ACD among the care of adult patients, few pediatric data exist. The goal of this study was to identify barriers to conducting ACD for children with life-threatening conditions.
Methods:
Physicians and nurses from practice settings where advance care planning typically takes place were surveyed to collect data regarding their attitudes and behaviors regarding ACD.
Results:
A total of 266 providers responded to the survey: 107 physicians and 159 nurses (54% response rate). The top 3 barriers were: unrealistic parent expectations, differences between clinician and patient/parent understanding of prognosis, and lack of parent readiness to have the discussion. Nurses identified lack of importance to clinicians (P = .006) and ethical considerations (P < .001) as impediments more often than physicians. Conversely, physicians believed that not knowing the right thing to say (P = .006) was more often a barrier. There are also perceived differences among specialties. Cardiac ICU providers were more likely to report unrealistic clinician expectations (P < .001) and differences between clinician and patient/parent understanding of prognosis (P = .014) as common barriers to conducting ACD. Finally, 71% of all clinicians believed that ACD happen too late in the patient's clinical course.
Conclusions:
Clinicians perceive parent prognostic understanding and attitudes as the most common barriers to conducting ACD. Educational interventions aimed at improving clinician knowledge, attitudes, and skills in addressing these barriers may help health care providers overcome perceived barriers.
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