JOURNAL OF PALLIATIVE MEDICINE Volume 17, Number 1, 2014 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2013.0227

The Impact of a Palliative Care Team on Residents’ Experiences and Comfort Levels with Pediatric Palliative Care Kelly L. Wu, MD, Jennifer Friderici, MSPH, and Sarah L. Goff, MD

Abstract

Background: 8,600 children are eligible for palliative care services each day in the US, yet many pediatric residents and pediatricians do not feel comfortable providing palliative/end of life care. Objective: To evaluate the impact of a palliative care team (PCT) on pediatric and internal medicine/pediatric (IM/Peds) residents knowledge, comfort level and experience providing pediatric palliative care (PPC). Design: Electronic 32-item questionnaire. Subjects: Pediatric and IM/Peds residents at ACGME accredited programs during the 2011–2012 academic year. Measurements: Residents’ PPC training, knowledge, comfort levels and experiences. Results: Nearly two-thirds of 294 respondents (63.6%; 95% CI: 58.2, 69.1) selected a description of PPC that describes palliative care as starting at the time of diagnosis regardless of treatment goals. Participants who reported the presence of a PCT at their institution selected this accurate description of PPC more often than those who did not report the presence of a PCT (72.3% vs. 53.3%; p < 0.001, Fisher’s Exact Test). Overall, 55.3% (95% CI: 49.2, 61.3) were comfortable providing PPC. Reporting the presence of a PCT was also associated with more comfort in providing PPC (p < 0.01). Conclusions: Reported presence of a PCT may be associated with greater resident comfort in providing PPC and a more accurate understanding of PPC. There remains ample opportunity to educate pediatric and IM/Peds residents in PPC. condition may be incurable, language barriers, and time constraints. Some of these barriers can be overcome by educating staff; however, how to do this effectively remains a question.22 Educational interventions for residents have resulted in increased comfort and knowledge in providing palliative care.17,18,23,24 However, it is unclear which intervention or combination of interventions are superior for providing and sustaining these results. Presence of pediatric palliative care teams (PCTs) is associated with earlier referrals to palliative care by physicians and nurses,25,26 and establishment of a geriatric/palliative medicine division has improved internal medicine and IM/ Peds residents’ knowledge and attitudes regarding palliative care.27 The impact of PCTs on pediatric residents has not been evaluated in a national sample. In this study we evaluated the impact a PCT has on residents’ knowledge, comfort levels, and experiences regarding PPC. We hypothesized that residents who report the presence of a PCT at any hospital in which they train will have enhanced knowledge, comfort levels, and experiences regarding PPC.

Introduction

T

he Children’s International Project on Palliative/ Hospice Services estimated that 8600 U.S. children are eligible for palliative care each day.1 Early integration of palliative care can ameliorate some of the morbidity experienced by children with life-limiting illness2 through improved quality of life, improved mood, and increased survival.3 However, referrals for palliative care services often take place late in the course of a child’s illness.4 Highquality palliative care also benefits patients and families by improving symptoms and quality of life, decreasing days in intensive care units, and increasing referrals to specialty services such as chaplaincy and social work.5–12 Many pediatric residents and practicing pediatricians do not feel comfortable providing pediatric palliative care (PPC).13–16 This discomfort may be related to the lack of palliative care training during residency demonstrated across specialties.17–21 Davies and colleagues22 found that the four most commonly cited barriers to providing PPC were uncertain prognosis, families not being ready to acknowledge that a Baystate Medical Center, Springfield, Massachusetts. Accepted August 30, 2013.

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IMPACT OF PCT

81 Table 1. Respondent Characteristics32 Survey respondents

Characteristic Residency program Pediatrics IM/Peds Sex Female Male Age (mean/SD) Race/ethnicity NH Caucasian NH Black/African American Asian Latin American/ Hispanic Multiracial/other Program year 1 2 3 4

FREIDA 2011 %

Overall N = 294 N (%)

PCT present N = 159 N (%)

PCT absent N = 135 N (%)

85.5% 14.5%

240 (81.6%) 54 (18.4%)

138 (86.8%) 21 (13.2%)

102 (75.6%) 33 (24.4%)

70.2% 29.8%

222 (75.5%) 72 (24.5%) 29.2/3.1

124 (78.0%) 35 (22.0%) 29.3/3.5

98 (72.6%) 37 (27.4%) 29.1/2.5

216 12 33 19 14

(73.5%) (4.1%) (11.2%) (6.5%) (4.8%)

117 6 18 12 6

(73.6%) (3.8%) (11.3%) (7.6%) (3.8%)

99 6 15 7 8

(73.3%) (4.4%) (11.1%) (5.2%) (5.9%)

108 91 75 20

(37.0%) (30.9%) (25.5%) (6.8%)

56 51 40 12

(35.2%) (32.1%) (25.2%) (7.6%)

52 40 35 8

(38.5%) (29.6%) (25.7%) (5.9%)

P-value* 0.02

0.34 0.53 0.85

0.60

*Unpaired t-test (age), Fisher’s exact test (categorical), or v2 test for trend of odds (ordinal) comparing column 2 (PCT present) to column 3 (PCT absent).

Methods Study design and population All residents attending Accreditation Council for Graduate Medical Education (ACGME) accredited pediatric and IM/ Peds residency programs in the United States (194 pediatrics programs and 80 IM/Peds programs) were eligible to participate in this study. Chief residents were excluded. This study was approved by the Baystate Medical Center (BMC) Institutional Review Board (IRB), which waived written informed consent. Questionnaires were sent to program directors (PDs), with a letter that informed them that the study had IRB approval at BMC. The letter indicated that by forwarding the e-mail, the PD allowed their residents to take part in the questionnaire. Questionnaire development and data collection A 32-item online questionnaire assessing residents’ PPC training, knowledge, comfort, and experiences was developed and pilot tested.28,29,30 During pilot testing, feedback was elicited on clarity and content. The questionnaire took 5– 10 minutes. Knowledge of PPC was assessed by asking resi-

dents to choose one of two definitions of PPC. One definition described end-of-life care only, while the other was consistent with the World Health Organization definition of PPC.31 Three questions addressed residents’ comfort regarding PPC and providing pain management. Fifteen questions addressed prior training in PPC and clinical/personal experiences with palliative care. Training questions related to formal (lectures, etc.) and informal (bedside teaching, etc.) training received in medical school/residency. The PDs of all ACGME accredited pediatric residency programs (IM/Peds programs if not directly affiliated with a pediatric program) were contacted via e-mail (n = 203). This email included a letter of introduction, a consent form, and a link to the questionnaire on SurveyMonkey.com. The PDs were asked to forward the e-mail to their pediatric and, when applicable, IM/Peds residents. A reminder e-mail was sent at six weeks. Analysis Exact proportions33,34 and 95% confidence intervals were calculated to describe the prevalence of PCTs. Respondents

Table 2. Association Between Reported Presence of Palliative Care Team and Knowledge/Comfort Overall N = 294 N (%) Selects most accurate definition of PPC Rates self as knowledgeable regarding PPC Rates self as comfortable discussing PPC with pediatric patients Rates self as comfortable discussing PPC with pediatric families Rates self as comfortable providing pain management to pediatric patients during the last two weeks of life *Fisher’s exact test comparing column 2 (PCT present) to column 3 (PCT absent).

187 47 77 105 147

(63.6%) (17.7%) (29.0%) (39.5%) (55.3%)

PCT present N = 159 N (%)

PCT absent N = 135 N (%)

115 42 63 82 86

72 5 14 23 61

(72.3%) (26.4%) (39.6%) (51.6%) (54.1%)

(53.3%) (4.7%) (13.1%) (21.5%) (57.0%)

P-value* 0.001 < 0.001 < 0.001 < 0.001 0.710

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WU ET AL. Table 3. Association between Reported Presence of Palliative Care Team and Palliative Care Experience in Residency

Reports formal palliative care training in residency Reports informal palliative care training in residency Reports rotation in palliative care

Overall N = 294 N (%)

PCT present N = 159 N (%)

PCT absent N = 135 N (%)

P-value*

142 (48.1%) 205 (69.5%) 10 (3.4%)

102 (64.2%) 132 (83.0%) 9 (5.7%)

40 (29.4%) 73 (53.7%) 1 (0.7%)

< 0.001 < 0.001 0.020

*Fisher’s exact test comparing column 2 (PCT present) to column 3 (PCT absent).

were compared on basic demographic and training characteristics by reported presence of a PCT using unpaired t-tests and Fisher’s exact tests. Self-rated comfort and knowledge responses were dichotomized into 1 = comfortable versus 0 = otherwise if they selected ‘‘very comfortable’’ or ‘‘comfortable’’ to relevant questions. Bivariable significance testing was conducted using Fisher’s exact test. Stata/MP statistical software version 12.1 (StataCorp., College Station, TX) was used for all analyses. Results Resident characteristics and training Responses were received from residents at 68 of the 203 eligible residency programs (n = 2733 residents). Two hundred ninety-four respondents completed the survey (294/ 2733, response rate 10.8%). Respondent demographics are summarized in Table 1. Most (73.7%, n = 216) respondents reported receiving some form of PPC training, with the most common forms being lectures 50.0% (n = 147) and bedside teaching 45.9% (n = 135). Overall, 2.7% (95% CI 0.9%–4.6%) reported at least six hours of formal PPC training in medical school; 4.8% (95% CI 2.3%–7.2%) reported at least six hours of informal training in medical school; and 4.8% (95% CI 2.3% – 7.2%) reported at least six hours of formal PPC training in residency. Most (58.9%, 95% CI 52.9%–64.8%) rated their PPC training as ‘‘poor.’’ Reported presence of a PCT More than half (54.1%, 95% CI 48.4%, 59.8%) of respondents reported the presence of a PCT at their institution. As shown in

Table 1, there were few statistically significant differences in respondent characteristics by reported presence of a PCT. Understanding and comfort with PPC Overall self-ratings of understanding and comfort with PPC are shown in Table 2. Most respondents (n = 187, 63.6%, 95% CI 58.1%–69.1%) selected the more accurate definition of PPC. Overall, 29% (95% CI 23%–34%) reported being comfortable or very comfortable discussing palliative care with pediatric patients; 39% (95% CI 34%–45%) reported being comfortable or very comfortable discussing palliative care with pediatric patients’ families; and 55% (95% CI 49%–61%) reported being comfortable or very comfortable providing pain management during the last two weeks of life. Respondents reporting presence of a PCT were significantly more likely than those who did not to select the accurate definition. They were also significantly more likely to report being comfortable discussing PPC with pediatric patients and their families. They were not more likely to report being comfortable providing pain management to pediatric patients in the last two weeks of their lives. Experience with PPC during residency Experiences with PPC during residency are shown in Table 3. Most respondents (69.5%) report at least informal palliative care training in residency. Fewer (48.1%) report formal palliative care training and a small minority (3.4%) report PPC rotation during residency. Respondents reporting a PCT at their institutions were significantly more likely to describe

FIG. 1. Resident experiences with providing palliative care.

IMPACT OF PCT having provided PPC services during their residency such as pain management, family meetings, social support, spiritual support, and bereavement (Fig. 1). Personal experiences Overall, residents reporting personal experiences with palliative care felt that it was vital to quality of life for not only the patient, but the family as well. These residents advocated for palliative care and reported being likely to involve it early. ‘‘[It] made me more likely to involve palliative care early.’’ ‘‘I am very amenable to use of palliative and hospice services having seen how it helped a family member die with grace.’’

83 obtained if a larger proportion of the sample responded. This could result from issues such as unmeasured differences between respondents and nonrespondents or the possibility that respondents may have had a greater interest in palliative care, leading to an overestimation of residents’ knowledge and comfort levels. Second, IM/ Peds residents may have had greater exposure to palliative care concepts through care of geriatric and adult intensive care unit patients, as well as adults with other life-limiting disease processes. We did not ascertain which adult rotations IM/Peds respondents had experienced prior to completing the survey, limiting our ability to measure this potential effect. Conclusions

Discussion Many pediatric residents and pediatricians have reported discomfort with providing PPC.13–16 Our results were consistent with this data, with less than 40% being comfortable discussing palliative care with patients or their families. We also found that over one-third of the residents surveyed did not know the definition of palliative care and associated palliative care with end-of-life care only. Given the well-documented value of PPC, 5–12 it is essential to educate future/ current pediatricians about PPC. Our study also demonstrated that reported presence of a PCT may have a positive impact on residents’ comfort and knowledge. A number of studies have found that educational interventions for residents result in increased comfort and knowledge in providing palliative care.17,18,23,24 However, it remains unclear as to which intervention or combination of interventions are superior for providing and sustaining this. Ahmed and colleagues27 were able to show an improvement in residents’ knowledge in palliative medicine with the establishment of a geriatric and palliative medicine division. Our study shows that residents who report training at a hospital with a PCT may be more comfortable and knowledgeable than those without a PCT. Given the current limitations of work hours and the increasing requirements on residents, the role of a PCT both in patient care and resident education will be an important question to answer with continued research. General internists routinely call on specialists to provide consultation on or to manage complex clinical conditions. Although many physicians do not feel comfortable managing the palliative care aspect of life-limiting illness,14,16 palliative care specialists remain relatively uncommon.35 Further assessment of the impact of PCTs on patient and family outcomes and resident training will help us further understand the potential value of this specialty. Limitations This study has limitations. First, results must be interpreted in the context of the low response rate. Low response rates in surveys may result in biases related to differences between respondents and nonrespondents. The population we surveyed was relatively homogeneous; and respondent characteristics were similar to those of the full cohort of pediatric and IM/Peds residents, thus reducing potential effects of the low response rate.36 However, it remains possible that different results might be

This study suggests that many pediatric and IM/Peds residents may not fully understand the goals of PPC and may leave residency without sufficient confidence in their PPC skills. This study also suggests that reported presence of a PCT is associated with greater comfort levels and understanding of PPC. Further studies of the impact the presence of a PCT has on pediatric residents’ knowledge, comfort, and experience may inform resident education in this area. Comparisons to other resident groups such as IM and family practice may further expand our understanding of the impact of PCTs across disciplines. Author Disclosure Statement No competing financial interests exist. References 1. National Hospice and Palliative Care Organization: ChiPPS White Paper: A call for change: Recommendations to improve the care of children living with life-threatening conditions. Alexandria, VA, 2001. 2. Knapp C, Madden V, Revicki D, Feeny D, Wang H, Curtis C, et al.: Health status and health-related quality of life in a pediatric palliative care program. J Palliat Med 2012;15(7): 790–797. 3. Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, et al.: Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010; 363(8):733–742. 4. Johnston DL, Vadeboncoeur C: Palliative care consultation in pediatric oncology. Support Care Cancer 2012;20:799–803. 5. Dickens DS: Comparing pediatric deaths with and without hospice support. Pediatr Blood Cancer 2010;54:746–750. 6. Pierucci RL, Russel SK, Leuthner SR: End-of-life care for neonates and infants: The experience and effects of a palliative care consultation service. Pediatrics 2001;108(3):653– 660. 7. Vollenbroich R, Duroux A, Grasser M, Brandstatter M, Borasio GD, Fuhrer M: Effectiveness of a pediatric palliative home care team as experienced by parents and health care professionals. J Palliat Med 2012;15(3):294–300. 8. Gans D, Kominski GF, Roby DH, Diamant AL, Chen X, Lin W, et al.: Better Outcomes, Lower Costs: Palliative Care Program Reduces Stress, Costs of Care for Children with Life-Threatening Conditions. Los Angeles, CA: UCLA Center for Health Policy Research, 2012, pp. 1–7. 9. Knapp CA, Madden VL, Curtis CM, Sloyer PJ, Huang IC, Thompson LA, et al.: Partners in care: Together for kids:

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Address correspondence to: Kelly L. Wu, MD Baystate Medical Center Pediatric Residency Program 759 Chestnut Street, S3581 Springfield, MA 01199 E-mail: [email protected]