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. Author manuscript; available in PMC: 2022 Dec 1.
Published in final edited form as: J Pain Symptom Manage. 2021 Jun 11;62(6):1252–1261. doi: 10.1016/j.jpainsymman.2021.06.001

Perceptions of Need for Palliative Care in Recently Hospitalized Patients with Systolic Heart Failure

Brett R Curtis 1, Bruce L Rollman 1,2,3, Bea Herbeck Belnap 2,3, Kwonho Jeong 4, Lan Yu 2, Matthew E Harinstein 5, Dio Kavalieratios 6,7
PMCID: PMC8908441  NIHMSID: NIHMS1725476  PMID: 34119619

Abstract

Context:

The symptom burden associated with heart failure (HF) remains high despite improvements in therapy and calls for the integration of palliative care into traditional HF care. Little is also known about how patients with HF perceive palliative care and patient-level characteristics associated with the need for palliative care, which could influence the utilization of palliative care in HF management.

Objectives:

To identify characteristics of HF patients associated with perceived need for palliative care

Methods:

We analyzed data from the Hopeful Heart Trial, which studied the efficacy of a collaborative care intervention for treating both systolic HF and depression. Palliative care preferences were collected during routine study follow-up. We assessed the association of perceived need for palliative care during study follow-up and baseline data on sociodemographics, clinical measures, and patient-centered outcomes. We then used descriptive statistics and logistic regression to analyze our data.

Results:

Participants were on average 64 years old, male, and reported severe HF symptoms and poor to below average quality of life (QoL). Most had unfavorable impressions of palliative care, but many still perceived a need for palliative care. Factors associated with perceived need for palliative care included depression, non-white race, more severe HF symptoms, and lower mental & physical health-related quality of life.

Conclusion:

HF patients’ beliefs about palliative care may affect utilization of palliative care. Specific characteristics can help identify patients with HF who may benefit from palliative care involvement. Education targeted towards patients with selected attributes may help incorporate palliative care into HF management.

Keywords: Palliative Care, Heart Failure, Symptom Management, Health Services Research, Depression

INTRODUCTION

More than 26 million individuals worldwide suffer from heart failure (HF), with about 1 million newly diagnosed cases annually in the United States. Despite improvements in treatment, mortality remains high with a median survival of 2.4 years after diagnosis.1,2 People with HF often experience symptom severity comparable to other diseases, such as cancer, yet HF-related symptoms like pain and depression remain under-recognized and/or undertreated.3,4,5–9 For example, over 40–70% of patients with NYHA Class II-IV symptoms have co-morbid depression, which is associated with greater risk of cardiovascular events, higher rates of hospitalization and lower quality of life.10,11

To help address unmet symptom burden and poor quality of life in HF, organizations such as the American Heart Association have called for the integration of palliative care into routine HF management.12,13 Palliative care has traditionally been considered as a standalone subspecialty. However, palliative care is both an interdisciplinary service delivered by clinicians with dedicated training (i.e. “specialty palliative care”) and an overarching approach to care whereby clinicians without palliative care specialization address key palliative domains such as basic symptom management, goals of care discussions during usual practice (“primary” palliative care).14 Empirical studies have shown that models of specialty palliative care delivery in HF can improve patient-centered outcomes while reducing hospitalization rates and costs.15–21 Yet, specialty palliative care remains underutilized in patients with HF due to a variety of barriers, including a lack of standardized referral criteria, limitations in the specialty palliative care workforce, and misperceptions by both patients and providers that palliative care is reserved for the end of life.22–24

Despite literature documenting provider and system barriers to palliative care in HF22–24, little is known about patient attitudes concerning palliative care in HF. These patient-level factors are critical to the successful integration of palliative care into HF because they may influence patient perceptions of and utilization of specialty palliative care services.25,26,27 As part of a clinical trial of a collaborative care intervention for concomitantly treating HF and depression,28 we assessed patients’ perceptions of and perceived need for palliative care, and the correlates associated with patients’ preferences.

METHODS

Study Design and Population

The Hopeful Heart Trial examined the impact of two telephone-delivered collaborative care interventions for either treating HF or HF plus depression in adults (≥ 21 years old) enrolled at eight hospitals in western Pennsylvania from April 2014 to October 2017.28 The study protocol was approved by the University of Pittsburgh Institutional Review Board.

A complete description of the Hopeful Heart Trial protocol has been previously published.28 Briefly, study nurses screened patients with systolic HF and New York Heart Association (NYHA) class II-IV symptoms for depression using standardized screening instruments at index hospitalization with the Patient Health Questionnaire (PHQ-2) followed by telephone administration of the PHQ-9 two weeks after discharge.29,30 Patients who screened positive for depression at both time points (PHQ-2 positive and PHQ-9 ≥ 10) were randomized in a 2:2:1 ratio to one of three trial arms: (1) collaborative care for HF only, (2) collaborative care for HF and depression or (3) their physicians’ usual care for both conditions. A sample of patients who screened negative for depression at both screening timepoints (PHQ-2 negative and PHQ-9 ≤ 5) were enrolled into a non-depressed comparison group (Figure 1).

Figure 1.

Figure 1.

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Patient Recruitment for the Hopeful Heart Trial. Of 756 HF patients enrolled, 671 completed the palliative care preferences form administered via telephone at 3-month follow-up. Of these, 555 had depression and 116 were non-depressed.

Assessments

Following confirmation of protocol-eligibility, research assistants administered the telephone assessment battery. It included participants‘ sociodemographics, the Mental and Physical Component Summary of the 12-item Short-Form Health Survey (SF-12 MCS and SF-12 PCS), the 12-item Kansas City Cardiomyopathy Questionnaire (KCCQ-12), and 17-item Hamilton Rating Scale for Depression (HRS-D).31–33 The PHQ-9 was not administered at any other timepoint after 2 weeks post-hospital discharge. Blinded to participants‘ randomization status, research assistants 3-months later re-administered via telephone the assessment battery plus palliative care preferences questionnaire.

To assess patients’ palliative care impressions and perceived need, we used two items on a six-item Likert-type scale that were adapted from a prior study of oncology patient perceptions regarding palliative care:34

Perceived Current Need for Palliative Care (Agree):

“Please rate how strongly you agree/disagree with the following statement: Palliative/supportive care would be helpful to me or my family now. 1 – Disagree completely to 6 – Agree completely.”

Impressions of Palliative Care:

“Please rate how favorable your overall impressions of palliative/supportive care services are on a scale from 0 – not at all favorable to 5 – most favorable.”

As we administered the palliative care preferences questionnaire at three months, we limited our analysis to those 671 participants (of the 756 enrolled in Hopeful Heart Trial) who completed their three month follow-up assessment.28

Covariates

We selected covariates prior to analysis based on clinical and theoretical plausibility for influence on palliative care preferences. These included demographics (age, sex, race, education), social factors (employment, insurance status, social support, and a longitudinal relationship with a primary cardiologist), clinical indicators of disease severity (dichotomized ejection fraction (EF) at 35–45% and <35%, NYHA class, number of hospitalizations since randomization) and patient-reported quality of life.13,27,35,36 We included KCCQ-12 to represent disease-specific health-related quality of life (HRQoL), and the SF-12 MCS and PCS scales as general HRQoL measures.32,33 More detailed information on variable selection can be found in Online Supplementary Table 1.

Statistical Analysis

We report baseline demographics and clinical characteristics using mean and standard deviation (SD) for continuous and proportions for categorical variables. We dichotomized the response variable based on a bimodal distribution between perceived need and no perceived need for palliative care (Figure 2). For descriptive statistics, we used Pearson’s chi-square test for categorical and independent two-sample t-test for continuous variables. We compared participants with depression to non-depressed participants in the control arm to investigate the association between mental health comorbidity and palliative care preferences. Those with depression consisted of those in the three trial arms who screened PHQ-2 positive during their index hospitalization and PHQ-9 ≥ 10 at 2 weeks post-hospital discharge (Figure 1).

Figure 2.

Figure 2.

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Histogram of Perceived Need for and Impressions of Palliative Care by Depressed and Non-Depressed Participants. Participants with depression were those enrolled in collaborative care arms for management of HF and comorbid depression, while the non-depressed participants were enrolled in the usual care arm for HF alone treatment.

We used a series of regression models to examine the associations of palliative care preferences and covariates. First, we used univariate ordinal logistic regression to analyze the association between covariates and perceived need for palliative care. We then ran models using a dichotomized perceived need variable as the outcome with univariate logistic regression. We also performed a full multivariable model and constructed a parsimonious model using a backward selection and a conservative cutoff of p = 0.20 because this approach is recommended by expert opinion and is less likely to leave out negative confounders.37 Finally, we completed a model using a priori selected covariates and dichotomized perceived need as the outcome.

RESULTS

Patients and Descriptive Analysis Comparing Depressed vs Non-Depressed Participants

Of 671 participants who completed their 3-month assessment (Figure 1), most reported severe HF symptoms, with over 60% meeting at least NYHA Class III criteria and had a left ventricular ejection fraction (EF) ≤ 35%. Participants also had below average mental HRQoL (SF-12 MCS mean = 46.4) and poor physical HRQoL (SF-12 PCS mean = 33.8) but average range HF-related QoL (KCCQ-12 mean = 56.6).

Among the entire cohort, those reporting need were also more likely to be younger (61 vs 67 years, p<0.001) and non-white (36% vs 16%, p<0.001), endorse moderate/high pain (64% vs 44%, p<0.001), and report lower baseline mental (44.7 vs 48.4, p = 0.002), physical (32.4 vs 35.4, p<0.001) and HF-related HRQoL (52.7 vs 61.1, p<0.001) (Table 1). Over half of participants had unfavorable impressions of and no perceived need for palliative care. Impressions of palliative care did not appear to differ appreciably between depressed and non-depressed participants (Figure 2). However, more depressed participants reported a perceived need for palliative care than non-depressed participants (87% vs 77%, p <0.001) (Table 1).

Table 1.

Baseline Demographics & Descriptive Statistics for Participants included in Analysis

ALL (N=671) NO PERCEIVED NEED FOR PALLIATIVE CARE (N=311) PERCEIVED NEED FOR PALLIATIVE CARE (N=360) P-VALUEa
Group Non- depressed 116 (17%) 70 (23%) 46 (13%) <0.001
Depressed 555 (83%) 241 (77%) 314 (87%)
Age (Continuous) 63.7±12.9 66.7±11.6 61.1±13.4 <.001
Age (Categorical) <65 years 339 (51%) 121 (39%) 218 (61%) <.001
≥65 years 332 (49%) 190 (61%) 142 (39%)
Female Sex 296 (44%) 149 (48%) 147 (41%) 0.07
Race (non-white) 181/667 (27%) 51/310 (16%) 130/357 (36%) <.001
Currently Working 113/669 (17%) 56/310 (18%) 57/359 (16%) 0.45
Education (> HS) 358 (53%) 171 (55%) 187 (52%) 0.43
Insured 649/668 (97%) 304/310 (98%) 345/358 (96%) 0.19
Currently living alone 192 (29%) 91 (29%) 101 (28%) 0.73
Longitudinal Relationship with HF Provider? 632/670 (94%) 296 (95%) 336/359 (94%) 0.38
NYHA Class II 256 (38%) 127 (41%) 129 (36%) 0.06
III 344 (51%) 160 (51%) 184 (51%)
IV 71 (11%) 24 (8%) 47 (13%)
Left Ventricular EF < 35% 423 (63%) 200 (64%) 223 (62%) 0.59
35% - 45% 246 (37%) 111 (36%) 135 (38%)
Presence of Automatic Implantable Cardioverter Defibrillator 237/655 (36%) 104/309 (34%) 133/356 (37%) 0.32
# Medications Currently Prescribed (N) 0–7 149 (22%) 59 (19%) 90 (25%) 0.06
≥8 522 (78%) 252 (81%) 270 (75%)
# Hospitalizations since last visit (Continuous) 0.4±0.7 0.4±0.7 0.5±0.8 0.05
Short Form 12 Mental Health (SF-12) (Continuous) 46.4±12.5 48.4±12.6 44.7±12.1 0.002
Short Form 12 Physical Health (SF-12) (Continuous) 33.8±10.8 35.4±10.9 32.4±10.5 <.001
Kansas City Cardiomyopathy Questionnaire (KCCQ-12) (Continuous) 56.6±24.6 61.1±24.0 52.7±24.4 <.001
Patient Health Questionnaire-9 (PHQ-9) (Continuous) 12.0 (5.8) 11.3 (6.1) 12.6 (5.4) 0.0024
Hamilton Rating Scale for Depression (HRS-D) (Continuous) 14.2 (8.6) 12.5 (8.2) 15.6 (8.7) <.0001
Pain * No/Low Pain 303 (45%) 173 (56%) 130 (36%)
Moderate/High Pain 368 (55%) 138 (44%) 230 (64%) <.0001
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a.

Pearson’s chi-square test or independent two-sample t-test

*

Pain use: moderate/high pain interference (score=3,4,5) on question #5 of SF-12 MCS or PCS; no/low pain (score=1 or 2) at baseline

Univariate and Multivariable Logistic Regression

In univariate logistic regression, greater perceived need for palliative care was related to depression at baseline, non-white race and NYHA class IV, while greater mental, physical and HF-specific HRQoL and age ≥ 65 years were associated with lower perceived need (Table 2). These associations persisted when perceived need was dichotomized into perceived need vs no perceived need. In a multivariable model including all univariate predictors with dichotomized perceived need as the outcome, depression (OR: 1.86; 95% CI:1.07, 3.23) and non-white race (OR: 3.19; 95% CI: 2.07, 4.91) were associated with perceived need for palliative care, while no perceived need was related to age ≥ 65 years (OR: 0.53; 95% CI: 0.37, 0.76) and greater mental HRQoL (OR: 0.98; 95% CI: 0.96, 1.00). These associations held in a parsimonious model, which also found that greater physical HRQoL (OR: 0.98; 95% CI: 0.97, 1.00) was related to no perceived need (Table 3).

Table 2.

Association between Factors and the Odds of Expressing a Perceived Need for Palliative Care, both as a Continuous Variable and Dichotomous Outcome

Factor Comparison Perceived current need for palliative care (continuous) Perceived vs. No Perceived Need for Palliative Care (Dichotomized)
OR [95% CI] p OR [95% CI] p
Depression Non-depressed 1.93 [1.33, 2.78] <.001 1.98 [1.32, 2.98] 0.001
Age ≥65 Age<65 0.46 [0.35, 0.60] <.001 0.41 [0.30, 0.57] <.001
Female Sex Male Sex 0.90 [0.69, 1.18] 0.47 0.75 [0.55, 1.02] 0.07
Race (non-white) Race (white) 2.17 [1.60, 2.94] <.001 2.91 [2.01, 4.21] <.001
Education (≥ College) Education (<College) 0.87 [0.66, 1.13] 0.29 0.88 [0.65, 1.20] 0.43
Currently Working Not Working 0.87 [0.61, 1.24] 0.44 0.86 [0.57, 1.28] 0.45
Currently Insured Not insured 0.56 [0.25, 1.29] 0.18 0.52 [0.20, 1.39] 0.20
Currently living alone Living with others 1.03 [0.77, 1.38] 0.86 0.94 [0.67, 1.32] 0.73
Longitudinal Relationship with HF Provider No relationship 0.75 [0.43, 1.31] 0.31 0.74 [0.38, 1.45] 0.38
NYHA Class III NYHA Class II 1.17 [0.88, 1.55] 0.28 1.13 [0.82, 1.57] 0.45
NYHA Class IV NYHA Class II 1.90 [1.20, 3.00] 0.006 1.93 [1.11, 3.34] 0.02
EF 35–45%a EF<35% 1.10 [0.84, 1.46] 0.48 1.09 [0.80, 1.50] 0.59
Presence of AICDb No AICD 1.07 [0.81, 1.42] 0.63 1.18 [0.85, 1.62] 0.32
≥8 Medications Prescribed ≤7 Medications 0.77 [0.56, 1.06] 0.11 0.70 [0.48, 1.02] 0.06
# Hospitalizations since last visit (Continuous) 1.13 [0.94, 1.36] 0.19 1.24 [1.00, 1.54] 0.05
SF-12 MCSc (Continuous) 0.98 [0.97, 0.99] <.001 0.98 [0.96, 0.99] <.001
SF-12 PCSd (Continuous) 0.98 [0.96, 0.99] <.001 0.97 [0.96, 0.99] <.001
KCCQ-12e (Continuous) 0.99 [0.98, 0.99] <.001 0.99 [0.98, 0.99] <.001
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OR = odds ratio.

Each OR represents the odds of having a perceived need for palliative care among participants with a value of the factor of interest as compared to those with the comparison value. As an interpretive example, a participant with depression would have, on average, 98% greater odds of expressing a perceived need for palliative care than a participant without depression.

a.

EF = Ejection Fraction

b.

AICD = Automatic Implantable Cardioverter Defibrillator

c.

SF-12 MCS = Short Form 12 Mental Health Questionnaire Score

d.

SF-12 PCS = Short Form 12 Physical Health Questionnaire Score

e.

KCCQ-12 = Kansas City Cardiomyopathy Questionnaire

Table 3.

Association between Factors and the Odds of Expressing a Perceived Need for Palliative Care as a Dichotomized Outcome in Multivariable and Parsimonious Models

Factor Comparison Full Model for Perceived Need for Palliative Care (Dichotomized)f Parsimonious Model for Perceived Need for Palliative Care (Dichotomized)g
OR [95% CI] p OR [95% CI] p
Depression Non-depressed 1.86 [1.07, 3.23] 0.027 1.99 [1.16, 3.41] 0.01
Age ≥65 Age<65 0.53 [0.37, 0.76] 0.001 0.54 [0.38, 0.75] <.001
Female Sex Male Sex 0.71 [0.50, 1.01] 0.06 0.72 [0.51, 1.01] 0.06
Race (non-white) Race (white) 3.19 [2.07, 4.91] <.001 3.26 [2.14, 4.98] <.001
Education (≥ College) Education (<College) 0.84 [0.60, 1.18] 0.32
Currently Working Not Working 0.93 [0.58, 1.49] 0.76
Currently Insured Not insured 0.42 [0.13, 1.32] 0.14 0.41 [0.13, 1.27] 0.12
Currently living alone Living with others 0.91 [0.62, 1.34] 0.64
Longitudinal Relationship with HF Provider No relationship 0.99 [0.46, 2.13] 0.97
NYHA Class III NYHA Class II 1.21 [0.82, 1.77] 0.33
NYHA Class IV NYHA Class II 1.56 [0.83, 2.92] 0.17
EF 35–45%a EF<35% 1.35 [0.93, 1.97] 0.11 1.38 [0.95, 2.00] 0.09
Presence of AICDb No AICD 1.39 [0.95, 2.03] 0.09 1.33 [0.92, 1.93] 0.13
≥8 Medications Prescribed ≤7 Medications 0.72 [0.46, 1.11] 0.14
# Hospitalizations since last visit (Continuous) 1.14 [0.89, 1.46] 0.28
SF-12 MCSc (Continuous) 0.98 [0.96, 1.00] 0.05 0.98 [0.97, 1.00] 0.05
SF-12 PCSd (Continuous) 0.98 [0.96, 1.00] 0.07 0.98 [0.97, 1.00] 0.04
KCCQ-12e (Continuous) 1.00 [0.99, 1.02] 0.44
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OR = odds ratio.

Each OR represents the odds of having a perceived need for palliative care among participants with a value of the factor of interest as compared to those with the comparison value. The full model included all listed variables. Only variables meeting a significance threshold of p = 0.20 were included in the parsimonious model. As an interpretive example of the full model, in a comparison of two patients alike in all other ways (i.e. all covariates adjusted to their respective median value), the participant with depression would have, 86% greater odds of expressing a perceived need for palliative care than a participant without depression. ORs for the parsimonious model would be interpreted similarly.

a.

EF = Ejection Fraction

b.

AICD = Automatic Implantable Cardioverter Defibrillator

c.

SF-12 MCS = Short Form 12 Mental Health Questionnaire Score

d.

SF-12 PCS = Short Form 12 Physical Health Questionnaire Score

e.

KCCQ-12 = Kansas City Cardiomyopathy Questionnaire

f.

All listed variables were included in the Full model

g.

Variables included in the parsimonious model include: Depression, Age >65, Female Sex, Non-white race, Currently insured, Lowest EF (35–45%), Presence of AICD, SF-12 MSC Score, SF-12 PCS Score, KCCQ-12 Score

After controlling for selected variables, an a priori model with dichotomized need found that women were more likely to report no perceived need for palliative care (OR: 0.68; 95% CI: 0.49, 0.96) than men (Online Supplement Table 2).

DISCUSSION

Among recently hospitalized patients with systolic HF who were recruited into a trial for treating HF alone and HF with co-morbid depression, most held unfavorable impressions about palliative care, yet were evenly divided on their perceived need for palliative care. We identified a combination of factors that were associated with perceived need for palliative care - both clinical and patient-reported - which included depression, younger age, non-white race, NYHA class IV symptoms and poorer QoL.

Although participants held largely unfavorable impressions of palliative care, more depressed than non-depressed participants reported perceived need for palliative care. This seeming contradiction echoes similar findings seen in healthy individuals and those with terminal illness. Studies have shown that people hold at best a neutral impression of palliative care38 and the term “palliative care” itself evokes confusion and fear because of perceived links to active dying or hospice.39–42 However, patients with chronic illness simultaneously report overwhelming symptom burden and often desire greater symptom management, a key function of specialty PC.40,42

Qualitative studies help understand the paradox between patients’ self-reported need for greater symptom management and avoidance of seeking assistance from palliative care specialists able to fill this need. For example, cancer patients reported increased comfort with palliative care despite feeling uneasy with the term “palliative care” after receiving a palliative care intervention. Patients were especially uncomfortable using “palliative care” when referring to themselves.40 A qualitative study of preferences for palliative care in heart failure showed similar discordance. After exposure to a standard definition of palliative care, patients reacted favorably to palliative care’s comprehensive approach to care, but still endorsed that palliative care was best reserved for the end-of-life.43 In the context of these studies, our findings suggest that perhaps patients’ desire for a core element of palliative care practice (i.e. symptom management), misperceptions such as those that palliative care implies “end-of-life” care may impede its own utilization.

Recent data further explains this paradox and suggests that terminology has a significant effect on the provision of palliative care. As previously mentioned, the term “palliative care” may itself impede utilization by providers and patients because of associations with death and dying.22,44 Some have advocated for changing the name of palliative care to “supportive care” based on these perceptions and studies suggesting that patients view “supportive care” more favorably.34 Other data has linked that this rebranding to “supportive care” to increased utilization of palliative care services.44,45 Despite promise, any changes in terminology must rely on consensus definitions that are widely and consistently used to prevent misperceptions that have haunted palliative care in the past.46

Our results confirm previously identified relationships while offering novel findings. In our analyses, depression remained consistently associated with perceived need for palliative care. Literature from non-HF populations supports the link between psychiatric morbidity and perceived need for health services.27,47 In addition, sociodemographic factors (i.e. younger age, non-white race), NYHA class IV symptoms and poorer QoL were significantly associated with perceived need for palliative care across multiple analyses. Interestingly, individuals younger than 65 were more likely to express a perceived need for palliative care in our study. This suggests that these patients either suffer from more severe disease or hold more open attitudes toward palliative care, potentially related to shifting social conceptions of palliative care. Regardless, prior literature supports the relationship between age and palliative care preferences. Other studies have explored how these attitudes relate to racial differences in palliative care provision.48–51 Because palliative care inherently focuses on relieving suffering, the relationship of poor QoL and clinical indicators of disease progression with perceived need for palliative care has face validity. However, objective indicators of disease severity like EF were not associated with perceived need, highlighting the difficulty in predicting which patients require greater symptom management.

Our study has several limitations. First, though the questions assessing palliative care preferences have not been formally validated, they have been used in previous studies,34 and have face validity. Second, our results should be interpreted carefully because our study is cross-sectional, and causality should not be inferred. We also did not account for confounding or collinearity because our goal was to describe patient-level factors associated with preferences for palliative care. Third, multiple drawbacks to variable dichotomization exist, notably reduced statistical power and underestimation of variation in outcome variables.52 However, we feel that the ease of interpretability gained with dichotomization, which more closely matches clinical decision making, assists with understanding our results. Dichotomization of a Likert scale item assessing perceptions of palliative care holds precedent in a similar study examining correlates of perceived need.35 We also emphasize that our findings remain exploratory and do not require the same degree of statistical rigor required for predictive models. Fourth, our findings may have limited generalizability because data came from a single region of the United States (Western Pennsylvania), and the trial population may not be representative of general HF patients in the community. Finally, our questionnaire assessed participants’ desire for palliative care at the time of the interview, rather than future need for palliative care. This difference in wording may have changed participants’ responses in unforeseen ways. For example, participants may have understated their perceived need for greater symptom management in the present, rather than their need for support in the future.

In summary, participants’ conflicting impressions of and perceived need for palliative care suggests that patients with HF desire greater symptom management but are reluctant to utilize palliative care because of profoundly held perceptions about the field. We also found factors other than disease severity (e.g. race, depression, HRQoL) are associated with perceived need for specialty palliative care among recently hospitalized patients with systolic HF. Since perceived need may be an important determinant of provision of health services like palliative care,53,54 these findings indicate that patients with HF and depression may feel a need for greater symptom management earlier in their disease course. Our results also suggest that guideline-endorsed triggers for palliative care involvement, such as NYHA Class IV criteria,12,13 may not comprehensively represent patients with the greatest need for additional support. Instead, patient-reported symptom burden and HRQoL may more accurately discriminate perceived need.

Our findings have implications for more patient-centered approaches to improve integration of palliative care into HF management. First, misperceptions about palliative care as purely end-of-life care must be dispelled to help improve patient, caregiver, and provider understanding of the comprehensive role of palliative care across the HF continuum. Second, as illustrated by our analyses, three categories of information may assist providers to identify patients greatest need for specialty palliative care: 1) sociodemographic factors like age and race, 2) patient-centered outcomes like depression and QoL, and 3) a patient’s own stated desire for palliative care. These factors may allow for more a more nuanced and patient-centered approach to identifying those with HF who may benefit from specialty palliative care, compared to clinical criteria alone (e.g., NYHA class).

Supplementary Material

1
2

KEY MESSAGE:

This article describes preferences regarding palliative care and characteristics associated with perceived need for palliative care among patients with heart failure. Targeted education may help dispel mistaken beliefs about palliative care, while recognition of patients with self-reported need for palliative care may help deploy resources more effectively in HF management.

Acknowledgments:

Yael Schenker MD MAS, Bob M. Arnold MD, Andrew Althouse PhD

Financial Support:

National Heart, Lung and Blood Institute grant R01 HL114016 (PI: Rollman). Dr. Kavalieratos receives research support from the NHLBI (K01HL133466) and the Cystic Fibrosis Foundation (KAVAL19QI0).

Footnotes

Publisher's Disclaimer: This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.

Conflicts of Interest: None of the authors has any conflicts to disclose.

Trial Registration: ClinicalTrials.gov identifier NCT02044211.

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