The End-of- Life Experience Of Patients With Cystic Fibrosis And The Role Of Pediatric Palliative Care Consultation.

Title

The End-of- Life Experience Of Patients With Cystic Fibrosis And The Role Of Pediatric Palliative Care Consultation.

Creator

Rabinowitz E; Sawicki G; Ullrich C

Identifier

DOI: http://dx.doi.org/10.1016/j.jpainsymman.2015.12.103

Publisher

Journal Of Pain And Symptom Management

Date

2016

Description

Objectives
Describe patterns of medical care provided to patients
with cystic fibrosis (CF) around the end of
life.
Explore the roles a pediatric palliative care
consultation service serves for patients with CF
who ultimately die from their disease.
Original Research Background. While major advances
have been made in the care of patients with
cystic fibrosis (CF), it remains a life-limiting disease
associated with significant morbidity. Little is known
about the patterns of end-of-life (EOL) care for this
population and the role pediatric palliative care
consultation can serve.
Research Objectives. To characterize EOL care for
patients with CF who received pediatric palliative
care consultation since the inception of the Pediatric
Advanced Care Team (PACT) at Boston Children’s
Hospital (BCH).
Methods. We identified patients, age $5 years,
who died of CF-related disease between 2009 and
2014. Patient, clinical, and PACT consultation
characteristics were abstracted from the medical
record.
Results. Fourteen patients with CF who died were
identified, 57% female; mean age at death was 20.6
years (range 14.8 to 42.4 years). Most (86%) received
a PACT consult. Median time between PACT consult
and death was 152 days (range 34 days to 7.4 years).
Content of PACT consultations most commonly
included symptom management, goals of care,
advance care planning, and psychosocial support.
Among all who died, (93%) died in the ICU; 86%
had a tracheostomy or were intubated, and 100%
received non-invasive or mechanical ventilation leading
up to death. Seven patients who died in the hospital
(54%) had resuscitation status orders documented
a median of 9.1 days prior to death (range 0.4 to 39.1
days).
Conclusion. The majority of patients with CF who
died received formal pediatric palliative care consultation,
often well before death. Most patients also
received intensive life-sustaining interventions immediately
prior to death.
Implications for Research, Policy or
Practice. There appears to be a role for palliative
care consultation to help foster communication at
the EOL for patients with CF. Further exploring
the role and timing of palliative care consultation
for patients with CF may help healthcare providers
identify areas of improvement in the assessment
and implementation of their patients’ goals of
care.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

March 2016 List

Citation

Rabinowitz E; Sawicki G; Ullrich C, “The End-of- Life Experience Of Patients With Cystic Fibrosis And The Role Of Pediatric Palliative Care Consultation.,” Pediatric Palliative Care Library, accessed December 6, 2021, https://pedpalascnetlibrary.omeka.net/items/show/10583.

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