Early introduction of palliative care and advanced care planning for children with complex chronic medical conditions: A pilot study

D. B. Liberman, E. Song, L. M. Radbill, P. K. Pham, Sabrina Fraser Derrington

Research output: Contribution to journalArticle

11 Citations (Scopus)

Abstract

Background: Children with complex chronic medical conditions benefit from early introduction of palliative care services and advanced care planning for symptom management and to support quality of life and medical decision-making. This study evaluated whether introducing palliative care during primary care appointments (1) was feasible; (2) increased access and improved knowledge of palliative care; and (3) facilitated advanced care planning. Methods: Pilot study of a multi-modal intervention including targeted education for primary care providers (PCPs), an informational packet for families and presence of a palliative care team member in the outpatient clinic. PCPs completed pre- and post-surveys assessing experience, knowledge and comfort with palliative care. Enrolled families received an information packet; a subset also met a palliative care team member. All families were encouraged to make an appointment with the palliative care team, during which the team assessed palliative care needs and goals of care. Upon study completion, the investigators assessed family and PCP satisfaction and collected feedback on project feasibility. Results: Twenty families were enrolled and received the information packet; 15 met a palliative care team member. Of the 17 participating families who were reached and completed a post-study survey, 11 families had never heard of palliative care and 13 were unaware that the palliative care team existed. Most families perceived palliative care information as 'very helpful' and 'very important'. All would recommend palliative care team services to others. Nine families followed up with the palliative care team, but none was prepared to complete an advanced care plan. PCPs reported lack of training in communicating bad news and conducting goals of care discussions. However, they felt increasingly comfortable introducing palliative care to families and supported program continuation. Conclusions: Initiating palliative care services in the outpatient primary care setting is logistically challenging but increases access to palliative care for children with complex chronic medical conditions and improves palliative care knowledge and comfort for PCPs.

Original languageEnglish (US)
Pages (from-to)439-449
Number of pages11
JournalChild: Care, Health and Development
Volume42
Issue number3
DOIs
StatePublished - May 1 2016

Fingerprint

Child Care
Palliative Care
Primary Health Care
Patient Care Planning
Appointments and Schedules
Ambulatory Care
Ambulatory Care Facilities

Keywords

  • Advanced care planning
  • Decision-making
  • End of life
  • Palliative care
  • Special-needs children

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Developmental and Educational Psychology
  • Public Health, Environmental and Occupational Health

Cite this

@article{df0e50d127ae44359608face54e5f58a,
title = "Early introduction of palliative care and advanced care planning for children with complex chronic medical conditions: A pilot study",
abstract = "Background: Children with complex chronic medical conditions benefit from early introduction of palliative care services and advanced care planning for symptom management and to support quality of life and medical decision-making. This study evaluated whether introducing palliative care during primary care appointments (1) was feasible; (2) increased access and improved knowledge of palliative care; and (3) facilitated advanced care planning. Methods: Pilot study of a multi-modal intervention including targeted education for primary care providers (PCPs), an informational packet for families and presence of a palliative care team member in the outpatient clinic. PCPs completed pre- and post-surveys assessing experience, knowledge and comfort with palliative care. Enrolled families received an information packet; a subset also met a palliative care team member. All families were encouraged to make an appointment with the palliative care team, during which the team assessed palliative care needs and goals of care. Upon study completion, the investigators assessed family and PCP satisfaction and collected feedback on project feasibility. Results: Twenty families were enrolled and received the information packet; 15 met a palliative care team member. Of the 17 participating families who were reached and completed a post-study survey, 11 families had never heard of palliative care and 13 were unaware that the palliative care team existed. Most families perceived palliative care information as 'very helpful' and 'very important'. All would recommend palliative care team services to others. Nine families followed up with the palliative care team, but none was prepared to complete an advanced care plan. PCPs reported lack of training in communicating bad news and conducting goals of care discussions. However, they felt increasingly comfortable introducing palliative care to families and supported program continuation. Conclusions: Initiating palliative care services in the outpatient primary care setting is logistically challenging but increases access to palliative care for children with complex chronic medical conditions and improves palliative care knowledge and comfort for PCPs.",
keywords = "Advanced care planning, Decision-making, End of life, Palliative care, Special-needs children",
author = "Liberman, {D. B.} and E. Song and Radbill, {L. M.} and Pham, {P. K.} and Derrington, {Sabrina Fraser}",
year = "2016",
month = "5",
day = "1",
doi = "10.1111/cch.12332",
language = "English (US)",
volume = "42",
pages = "439--449",
journal = "Child: Care, Health and Development",
issn = "0305-1862",
publisher = "Wiley-Blackwell",
number = "3",

}

Early introduction of palliative care and advanced care planning for children with complex chronic medical conditions : A pilot study. / Liberman, D. B.; Song, E.; Radbill, L. M.; Pham, P. K.; Derrington, Sabrina Fraser.

In: Child: Care, Health and Development, Vol. 42, No. 3, 01.05.2016, p. 439-449.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Early introduction of palliative care and advanced care planning for children with complex chronic medical conditions

T2 - A pilot study

AU - Liberman, D. B.

AU - Song, E.

AU - Radbill, L. M.

AU - Pham, P. K.

AU - Derrington, Sabrina Fraser

PY - 2016/5/1

Y1 - 2016/5/1

N2 - Background: Children with complex chronic medical conditions benefit from early introduction of palliative care services and advanced care planning for symptom management and to support quality of life and medical decision-making. This study evaluated whether introducing palliative care during primary care appointments (1) was feasible; (2) increased access and improved knowledge of palliative care; and (3) facilitated advanced care planning. Methods: Pilot study of a multi-modal intervention including targeted education for primary care providers (PCPs), an informational packet for families and presence of a palliative care team member in the outpatient clinic. PCPs completed pre- and post-surveys assessing experience, knowledge and comfort with palliative care. Enrolled families received an information packet; a subset also met a palliative care team member. All families were encouraged to make an appointment with the palliative care team, during which the team assessed palliative care needs and goals of care. Upon study completion, the investigators assessed family and PCP satisfaction and collected feedback on project feasibility. Results: Twenty families were enrolled and received the information packet; 15 met a palliative care team member. Of the 17 participating families who were reached and completed a post-study survey, 11 families had never heard of palliative care and 13 were unaware that the palliative care team existed. Most families perceived palliative care information as 'very helpful' and 'very important'. All would recommend palliative care team services to others. Nine families followed up with the palliative care team, but none was prepared to complete an advanced care plan. PCPs reported lack of training in communicating bad news and conducting goals of care discussions. However, they felt increasingly comfortable introducing palliative care to families and supported program continuation. Conclusions: Initiating palliative care services in the outpatient primary care setting is logistically challenging but increases access to palliative care for children with complex chronic medical conditions and improves palliative care knowledge and comfort for PCPs.

AB - Background: Children with complex chronic medical conditions benefit from early introduction of palliative care services and advanced care planning for symptom management and to support quality of life and medical decision-making. This study evaluated whether introducing palliative care during primary care appointments (1) was feasible; (2) increased access and improved knowledge of palliative care; and (3) facilitated advanced care planning. Methods: Pilot study of a multi-modal intervention including targeted education for primary care providers (PCPs), an informational packet for families and presence of a palliative care team member in the outpatient clinic. PCPs completed pre- and post-surveys assessing experience, knowledge and comfort with palliative care. Enrolled families received an information packet; a subset also met a palliative care team member. All families were encouraged to make an appointment with the palliative care team, during which the team assessed palliative care needs and goals of care. Upon study completion, the investigators assessed family and PCP satisfaction and collected feedback on project feasibility. Results: Twenty families were enrolled and received the information packet; 15 met a palliative care team member. Of the 17 participating families who were reached and completed a post-study survey, 11 families had never heard of palliative care and 13 were unaware that the palliative care team existed. Most families perceived palliative care information as 'very helpful' and 'very important'. All would recommend palliative care team services to others. Nine families followed up with the palliative care team, but none was prepared to complete an advanced care plan. PCPs reported lack of training in communicating bad news and conducting goals of care discussions. However, they felt increasingly comfortable introducing palliative care to families and supported program continuation. Conclusions: Initiating palliative care services in the outpatient primary care setting is logistically challenging but increases access to palliative care for children with complex chronic medical conditions and improves palliative care knowledge and comfort for PCPs.

KW - Advanced care planning

KW - Decision-making

KW - End of life

KW - Palliative care

KW - Special-needs children

UR - http://www.scopus.com/inward/record.url?scp=84962761803&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84962761803&partnerID=8YFLogxK

U2 - 10.1111/cch.12332

DO - 10.1111/cch.12332

M3 - Article

VL - 42

SP - 439

EP - 449

JO - Child: Care, Health and Development

JF - Child: Care, Health and Development

SN - 0305-1862

IS - 3

ER -