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Special Series: Palliative Care

Use of Palliative Care Consultation Services for Infants With Life-Threatening Conditions in a Metropolitan Hospital

McLaughlin, S. Nicole DNP, CCRN, NNP-BC; Song, Mi-Kyung PhD, RN; Hertzberg, Vicki PhD; Piazza, Anthony J. MD

Editor(s): Fortney, Christine A. PhD, RN, Section Editor

Author Information
doi: 10.1097/ANC.0000000000000698
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Abstract

While advances in medical technology have improved the survival of infants, the number of neonatal deaths remains high. In 2013, nearly 16,000 infants died during the neonatal period in the United States.1 Many of those deaths occurred in an intensive care unit (ICU).2 Most common reasons for infants' deaths include extreme immaturity, birth trauma, genetic abnormality, and congenital disease or defect.3

Palliative care is a clinical approach that improves the quality of life of patients who have life-threatening conditions and their families4 and has become a care option when an infant has a life-limiting illness. It is important to consider palliative care as a reasonable approach to patient care in an attempt to decrease futility and minimize suffering, both in infant and family.5 Perinatal palliative care is an evolving field aimed at supporting families through the time of medical decision-making and plan of care. Medical advances also increase our ability for interventions including the support of extremely low birth-weight infants at the limits of viability.6 Early diagnosis and awareness of certain medical conditions prenatally allows for some perinatal plans and interventions anticipated during the neonatal period. Now that healthcare providers have progressed beyond the historical misbeliefs that infants are unable to perceive pain, reduction of discomfort should be a goal for all infants. The identification and treatment of pain and distressing symptoms is an essential component of neonatal palliative care.5–8 Studies have shown that the use of palliative care teams and palliative initiatives (protocols, electronic order sets, nursing care plans, staff education, and medication guidelines) in the neonatal intensive care unit (NICU) was associated with an increase in choosing comfort care as a care goal, decrease in unnecessary medical procedures, and increase in supportive services for infants and families.3,9 Professional organizations such as the American Academy of Pediatrics and the National Association of Neonatal Nurses promote provision of palliative care for infants and children who have a life-limiting illness.10,11 However, current literature is lacking regarding the use of palliative care for infants with life-limiting conditions. Therefore, the purposes of the project were to (1) describe palliative care consultation services provided to infants who were admitted to a NICU and subsequently died in the hospital and (2) examine whether palliative care consultation was associated with receipt of less aggressive interventions near the end of life.

METHODS

Study Design

A retrospective medical record review was conducted. This study did not meet requirements for institutional review board approval, as information from deceased infants was used.

Setting and Sample

This study was conducted at a children's hospital located in a metropolitan city in Georgia. Approximately 500 infants were admitted annually to the nonbirthing, tertiary NICU for the management of comorbidities of extreme prematurity, genetic abnormalities, congenital defects and anomalies, and birth trauma. Infants who needed in-unit surgery or extracorporeal membrane oxygenation were also managed in the NICU. Upon a request by the attending physician, associate provider (nurse practitioners, physician assistants), or clinical nurse, the Pediatric Advanced Care Team (PACT) provided palliative care consultation that included but was not limited to clarifying goals of care, symptom management, and support for families and care teams. The PACT was composed of 4 physicians, 2 nurse practitioners, and 1 social worker, who provided palliative care services for all inpatients. This hospital system was established in 2011.

The cohort included infants who were initially admitted to the NICU and died at the hospital between January 1, 2015, and December 31, 2016, including infants who were transferred to other units before receiving consultation. There were 1089 infants admitted into the NICU and 98 (9%) infants later died during that time. Infants who were admitted and died within 24 hours of admission (n = 23, 2%) were excluded because there would not be enough time for consultation. Infants who transferred to another hospital, were discharged home, or died outside the hospital (n = 11, 1%) were also excluded since data on end-of-life care were unavailable. The final sample included 64 infants.

Data Collection

To assess end-of-life care, the adapted End of Life Chart Review Form from the Center to Improve Care for the Dying12 was used to review 2 days prior to death. This time frame was chosen due to the typical rapid deterioration of infants at the end of life.3,9 Infant demographics, maternal information, admitting diagnosis, causes of death, procedures, and medical orders were abstracted. For the palliative care information, we abstracted data such as role of requesting medical provider (physician, practitioner, nurse, etc), reasons for consult, and time from consultation until death.

Data Analysis

Descriptive statistics (means, frequencies, etc) were used to summarize study variables. Infants were grouped into those who received consultation and those who did not. To compare the 2 groups in general characteristics and end-of-life management, we computed rate ratios and 95% confidence intervals. We chose to describe our data with confidence intervals, which not only gave an inferential indication of P > or < .05 but also gave an indication of the variability associated with each variable. Data were analyzed using SPSS, version 24.0, for Windows.

RESULTS

Sample Characteristics

Table 1 presents the characteristics of the 64 infants. The top 3 causes of death were lethal congenital defect/disease (n = 27, 42.2%), complications from prematurity (n = 16, 25%), and birth trauma/hypoxic ischemic encephalopathy (n = 7, 10.9%). Average length of stay in the hospital was 109.5 days (SD = 148.7). The majority of infants died in an ICU care setting (n = 63, 95%).

TABLE 1. - Characteristics of Infants (N = 64)
Variable n (%)
Sex
Male
Female

34 (53.1)
30 (46.9)
Race/ethnicity
White/Caucasian
Black/African American
Other

21 (32.8)
34 (53.1)
9 (14.0)
Cause of death
Congenital defects and diseasesa
Complications from prematurity
Birth trauma/hypoxic ischemic Encephalopathy
Genetic anomalies
Infectionb
Otherc

26 (40.6)
16 (25.0)
7 (10.9)
6 (9.4)
6 (9.4)
3 (4.7)
Mean (SD)
Gestation at birth, wk 34.2 (5.1)
Mother's age, y 27.4 (7.0)
Age at ICU admission, d 16.2 (29.1)
Length of stay, d 61.1 (76.2)
Age at death, d 109.5 (148.7)
Abbreviations: ICU, intensive care unit; SD, standard deviation.
aHypoplastic left heart syndrome and congenital diaphragmatic hernia, congenital autoimmune liver disease.
bIncludes bacterial and viral sources.
cChronic intestinal failure, nonimmune hydrops fetalis, and sudden anoxic event.

Use of Palliative Care Consultation

Only 20 (31%) infants received palliative care consultation (Table 2): of those, 11 (55%) were male and 9 (45%) were female. Frequent diagnoses for these infants included congenital heart disease (n = 6, 30%), genetic anomalies (n = 4, 20%), and chronic respiratory failure (n = 3, 15%). The NICU service consulted the PACT team for 8 (40%) of these infants and 12 (60%) consults were made following transfer or admission to another ICU unit. These units included the cardiac ICU (CICU) (n = 7, 35%), pediatric ICU (PICU) (n = 4, 20%), and technology-dependent ICU (TICU) (n = 1, 1%). Most frequent reasons for consultation, for infants who received requests, included assistance with defining goals of care and end-of-life conversations (n = 19, 95%), need for complex care coordination (n = 10, 50%), and symptom management (n = 6, 30%). Physicians most frequently made the consultation (n = 10, 50%), followed by nurse practitioners (n = 5, 25%). Infants lived an average of 42.9 days (SD = 42.7) after the consultation. Infants' sex, race, and diagnosis were not associated with whether or not palliative care consultation was provided.

TABLE 2. - Variables Related to Palliative Care Consultations (n = 20)
Variable n (%)
Clinician who requested PC consultation
Physician
Nurse practitioner
Physician assistant
Bedside nurse
Not documented

10 (50.0)
5 (25.0)
3 (15.0)
1 (5.0)
1 (5.0)
Reason for PC consultation
Goals of care/end-of-life Conversations
Care coordination
Symptom management
Hospice planning

19 (52.8)
10 (27.8)
6 (16.7)
1 (2.8)
Location of PC referral
Neonatal ICU
Cardiac ICU
Pediatric ICU
Technology-dependent ICUa

8 (40.0)
7 (35.0)
4 (20.0)
1 (5.0)
Mean (SD)
Age at consultation, d 91.1 (95.6)
Time of PC referral until death, d 42.9 (42.7)
Abbreviations: ICU, intensive care unit; PC, palliative care; SD, standard deviation.
aManages tracheostomies and/or feeding pumps for those who require ongoing complex care at discharge.

Comparison Between Infants Who Received Palliative Care and Those Who Did Not

Gestation at birth, mothers' age, age at admission, age at death, and total length of hospital stay were similar between the 2 groups (Table 3). Although infants with palliative care consultations had on average 40 days longer hospitalization, this trend was not statistically significant (P = .06). Whether or not receiving cardiopulmonary resuscitation within 48 hours of death, having life-sustaining treatments withdrawn, and having a do not resuscitate order were also similar between the 2 groups. Infants in both groups received multiple invasive procedures (eg, arterial or venous central line placement and intubation or tracheostomy attempts) at end-of-life. Infants with palliative care consultations, however, received fewer laboratory blood draws and fewer blood product transfusions (Table 4).

TABLE 3. - Comparison of End-of-Life Care for Infants Who Received Palliative Care Consultation and Who Did Not: Age and Length of Stay
Variable Infants With PC (n = 20) Mean (SD) Infants Without PC (n = 44) Mean (SD) 95% Confidence Interval
Lower Limit Difference Between Groups Upper Limit
Gestation, wk 35.3 (3.5) 33.7 (5.7) −0.73 1.60 3.93
Mother's age, y 26.8 (7.0) 27.7 (7.0) −4.77 −0.92 2.92
Age at ICU admission, d 16.0 (34.4) 16.3 (26.8) −17.99 −0.25 17.49
Length of stay, d 88.2 (77.5) 48.8 (73.2) −2.29 39.43 81.14
Age at death, d 132.0 (113.7) 99.2 (162.2) −38.05 32.77 103.59
Abbreviations: ICU, intensive care unit; PC, palliative care; SD, standard deviation.

TABLE 4. - Comparison of End-of-Life Care for Infants Who Received Palliative Care Consultation and Who Did Not: Sociodemographic and End-of-Life Variables
Variable Infants With PC (n = 20) Infants Without PC(n = 44)
Sociodemographic and Clinical Characteristics
n (%) n (%) Odds Ratio (95% CI)
Sex
Male
Female (reference)

11 (55.0)
9 (45.0)

23 (52.3)
21 (47.7)

1.1 (0.4-3.2)
Race/ethnicity
White/Caucasian (reference)
Black/African American
Other

9 (45.0)
10 (50.0)
1 (5.0)

12 (27.3)
24 (54.5)
8 (18.2)

0.6 (0.2-1.7)
0.2 (0.2-1.6)
Cause of death
Congenital defects and diseasesa
Complications from prematurity
Birth trauma
Genetic
Infectionb
Otherc (reference)

8 (40.0)
3 (15.0)
3 (15.0)
4 (20.0)
0 (0.0)
2 (10.0)

18 (40.9)
13 (29.5)
4 (9.1)
2 (4.5)
6 (13.6)
1 (2.3)

0.2 (0-2.8)
0.1 (0-1.7)
0.4 (0-6.3)
1 (0.1-19.0)
0
End-of-life care
Order for DNR
WLS
Cardiopulmonary resuscitationd

14 (70.0)
9 (45.0)
2 (10.0)

28 (63.6)
26 (59.1)
11 (25.0)

1.3 (0.4-4.2)
0.6 (0.2-1.6)
0.3 (0.1-1.7)
Mean (SD) Mean (SD)
Time from DNR to death, de
Time from WLS to death, minf
14.7 (41.7)
75.4 (47.2)
1.7 (2.6)
83.3 (113.0)
1.2 (1.0-1.5)
1.0 (1.0-1.0)
Invasive testing and procedures No. of Cases (per 100 Case Days) No. of Cases (per 100 Case Days) Rate Ratio (95% CI)
Arterial or central line placementd
Laboratory blood drawsd
Intubation/tracheostomy attemptd
NG/OG/replogle placementd
Transfusion of blood productsd
Surgeryd
Interosseous accessd
Abdominal paracentesis/drain placementd
Thoracentesis/chest tubed
5
35
3
0
8
0
0
0
0
12
49
10
21
24
7
4
4
3
0.4 (0.1-1.9)
0.1 (0-0.5)
0.2 (0-2.0)
0
0.2 (0.1-0.8)
0
0
0
0
Abbreviations: CI, confidence interval; DNR, do not resuscitate; NG/OG, nasogastric/orogastric; PC, palliative care; SD, standard deviation; WLS, withdrawal of life support.
aAre hypoplastic left heart syndrome and congenital diaphragmatic hernia, congenital autoimmune liver disease.
bIncludes bacterial and viral sources
cOther diagnoses include chronic intestinal failure, nonimmune hydrops fetalis, and sudden anoxic event.
dWithin 48 hours of death.
eInfants who received PC consults = 14, infants who did not = 28.
fInfants who received PC consults = 9, infants who did not = 26.

DISCUSSION

Despite numerous endorsements supporting palliative care for neonatal and pediatric populations,2 we found only 31% of the study sample received formal palliative care services before death. The requests for palliative care consultation were made by the clinicians who had prescriptive authority. While the most common reasons for palliative care consultation were assistance with defining goals of care and end-of-life conversations, need for complex care coordination, and symptom management, infants who received palliative care consultation and those who did not were similar in end-of-life care that they received. Although infants who had consultation received fewer blood transfusions and fewer laboratory blood tests, this difference was not statistically significant.

Interestingly, our study found that length of stay for infants without a palliative care consult was shorter than those who had palliative care consults. While counterintuitive, one possible explanation for this could be related to the novelty of the PACT during this timeframe. Prior to the establishment of the PACT, the NICU relied on its own staff to provide end-of-life care; this inclination may have persisted. Similar to the traditional consultative model of palliative care,13 consults could have been reserved for the most complicated cases for which the NICU team required additional guidance.

Distressing symptoms that affect quality of life including pain, nausea and vomiting, disordered sleep, respiratory distress, and constipation or diarrhea are frequently addressed while providing routine care to infants in the NICU.14 Among parents of infants who died in the NICU, pain, respiratory distress, agitation, and lethargy were most commonly identified,15 and most infants died having endured intensive measures in the 48 hours prior to death.9,16 Similarly to Abe et al,16 our study found that for 91% (n = 58) of included infants this was true. While nearly all of the infants included received medications for pain management (n = 62, 97%), consideration should be made to reduce invasive procedures, frequent laboratory monitoring, and other noxious stimuli.5,7 As infants are nonverbal, both subjective and objective methods must be used to identify pain, and while no multimodal pain scale exists for neonatal palliative care, several tools, such as NPASS and CRIES, have been validated to measure pain in neonates.5,7 Regardless of the tool used, careful attention to discomfort must be a component of any palliative care initiative.

The finding that the infants who received palliative care and those who did not were similar in admitting diagnoses and other characteristics suggests that palliative care referrals were not systematic for infants in this hospital. Creating unit guidelines and algorithms to efficiently identify infants who are appropriate for palliative care consultation may promote timely palliative care consultation and likely alter course of care for seriously ill infants who may not benefit from aggressive interventions near the end of life. Clinical guidelines could include order sets or standing orders to address symptom management, clinical interventions, and nursing care. Algorithms with indicators to refer for formal consultation could also be created. Although any infant facing a severe, life-threatening condition is a candidate for palliative care, algorithms could use diagnosis and/or prognosis as prompts to initiate palliative care. One study found that the creation of a severe diagnosis list to incite consultation was impactful in increasing palliative care consultations within the NICU.17 Additionally, some have suggested that palliative care is most appropriate for infants at the limits of viability, those with lethal congenital diseases or defects, and infants who are no longer responding to maximal medical therapies.5,17–19 Furthermore, unit-level education to inform healthcare team members about identifying infants appropriate for palliative care consultation would be necessary. In fact, lack of education surrounding palliative care has been defined as one of the greatest barriers to the adoption of palliative care in the NICU.20 The National Association of Neonatal Nurses recent position statement regarding palliative and end-of-life care for infants endorsed that “palliative and end-of-life care for infants and their families are an integral component of neonatal care” and that “nurses and nurse practitioners work with physicians and others to provide symptom management, relief of suffering, and dignity for infants and families.”21

This study is limited to a small sample size and being conducted in one hospital, and thus our findings may not be generalizable. It is possible that infants who died outside the NICU and were excluded from the study might have received palliative care consultation. Also, our medical record review timeline was limited to 2 years. Future research should include large-scale observation studies with a longer timeline to assess changes over time. Furthermore, studies to evaluate the impact of use of guidelines and algorithms for palliative care consultation are sorely needed.

CONCLUSION

Our medical record review found that causes of death of our sample were similar to national statistics with regard to frequency and, similarly, many infants died in an ICU care setting. We found that only 20 (31%) infants received consultation; however, care surrounding end-of-life, between infants who did and did not receive palliative care consultation, was similar. General characteristics between infants who did and did not receive consultation were similar and infants in both groups received invasive procedures.

References

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Keywords:

end-of-life care; infants; medical record review; neonatal intensive care; palliative care

© 2020 by the National Association of Neonatal Nurses.