Let Us Talk About It: Heart Failure Patients' Preferences Toward Discussions about Prognosis,Advance Care Planning,and Spiritual Support

Abstract

Objective:

The objective of this study is to describe preferences of patients with heart failure (HF) for having advance care planning (ACP) discussions with clinicians and to identify characteristics associated with those preferences.

Background:

National guidelines call for having ACP discussions with patients with serious illnesses such as HF. Many patients with HF do not discuss ACP with their physician despite wanting to have them.

Methods:

We conducted a cross-sectional cohort study between July 2007 and November 2009 within HF clinics affiliated with a large, urban, academic medical center. Patients with New York Heart Association HF classes II and III were surveyed about whether they had or would like to have discussions with their clinician about what to expect in the future regarding their HF, prognosis, ACP, and their surrogate choice.

Results:

Patients (n = 104) were on average 53 years old (standard deviation = 14.3; range: 21–84) and had Class II (57%) or Class III (43%) HF. Most patients had discussed what to expect in the future regarding HF (76.5%, 78/102), prognosis (68.0%, 68/100), surrogate choice (90.3%, 93/103), and ACP (46.5%, 47/101). Most of those who did not have these discussions would have liked to discuss expectations regarding their HF (87.5%, 21/24), prognosis (80.6%, 25/31), and ACP (59.6%, 31/52). Men were more likely than women to report having had discussions about their HF (83.6% vs. 62.9%; p = 0.02), prognosis (78.5% vs. 48.6%; p = 0.002), and ACP (56.1% vs. 28.6%; p = 0.01). On average younger patients were more likely to report having discussed what to expect regarding their HF (50 years vs. 59 years; p = 0.007), and to be asked about their spirituality (43 years vs. 56 years; p = 0.0001).

Discussion:

Conforming to national guidelines, most patients with HF have discussed ACP with clinicians and most of those who have not, want to. Findings should embolden clinicians to routinely discuss ACP.

Introduction

Heart failure (HF) is the leading cause of hospitalization and readmissions among adults.¹ National and international guidelines recommend the integration of advance care planning (ACP) early and throughout the disease trajectory.^2–4 Many patients with HF do not understand the cause or prognosis of their disease and rarely discuss end-of-life issues with their physician.⁵ Yet, patients want these discussions, and often wait to have them initiated by their physician,⁶ who may avoid these topics over worry that they may upset patients or take away hope.⁷ Regardless, these conversations are critical to understanding patient and family expectations and to developing mutually agreed-upon goals of care,^6,8 and not just focus on the diagnosis.^9,10 Understanding preferences toward important issues such as prognosis, goals of care, ACP, surrogate decision making, and social and spiritual support among patients with HF, and the patient factors associated with discussing these issues, may help guide clinicians in initiating discussions with their patients and in ensuring that care aligns with patient preferences.

Materials and Methods

Setting

We conducted a cross-sectional analysis of a cohort study conducted between July 2007 and November 2009 in the HF clinics affiliated with a large, urban, academic medical center in the United States providing care for ∼600 patients/year with HF.

Subjects

The inclusion criteria for this study required patients to be 18 years or older with New York Heart Association (NYHA) class II or class III HF,¹¹ irrespective of ejection fraction. Patients needed to be English speaking and provide written informed consent.

Procedure

Potential patients were identified using a convenience sampling approach. A research assistant introduced the study to eligible patients and obtained informed consent. Patients were given a baseline survey to complete at home and return using the stamped, self-addressed envelope. Follow-up telephone calls were made if surveys were not returned within four weeks. This study was approved by the UCSF Institutional Review Board.

Survey

The patient survey collected information including age, gender, race, ethnicity, HF class, years living with HF, number of heart-related hospitalizations, self-care, and support at home. Level of religiosity and spirituality was assessed using two items: to what extent do you consider yourself a religious/spiritual person? Responses were dichotomized to (1) not religious or spiritual and (2) slightly to very religious/spiritual. The survey assessed patient preferences for discussing the following issues with their clinician: what to expect in the future regarding HF, prognosis, ACP, and choice of a medical surrogate. For purposes of clarity and brevity of reporting, we have called these issues together ACP, as the single description that best summarizes them. For each topic, patients who reported not having had these discussions were asked whether they would like to have them. Heart-related quality of life (QoL) was assessed using the Minnesota Living with Heart Failure Questionnaire, which is a disease-specific instrument consisting of 21 items assessing the effects of HF on life satisfaction.¹² Lower scores indicate a better QoL.

Statistical analysis

Descriptive statistics including frequencies, means, and standard deviations (SDs) were used to examine the distribution of measures. Chi-square (χ²) analysis examined bivariate associations between categorical variables. Analysis of variance examined associations between categorical and continuous variables. The Statistical Package for the Social Sciences version 23 for Mac was used for all analyses.

Results

A total of 104 respondents from a possible 203 were involved in this study (51% response rate).

Patients were on average 53 years old (SD = 14.3; range: 21–84) and had NYHA HF class II (57%) or class III (43%). The majority of patients were men (66%), white/European (66.3%), and non-Hispanic (90.2%). Patients had been living with HF on average for 7.0 years (range: <1–46 years). Most patients reported that they regularly weighed themselves (79.8%) and had support at home (81.7%). The majority of patients indicated that they were slightly to very religious (68.2%) and many considered themselves slightly to very spiritual (84.7%). There were no differences in demographic characteristics between NYHA class II and class III patients.

Most patients reported having discussions with their clinician about what to expect in the future regarding HF (76.5%, 78/102), prognosis (68%, 68/100), and surrogate choice (90.3%, 93/103). Half of patients discussed ACP (46.5%, 47/101) (Table 1). Most who reported not having these conversations indicated that they would like to have them. Specifically, they wanted to discuss what to expect in the future regarding their HF (87.5%, 21/24), prognosis (80.6%, 25/31), and ACP (59.6%, 31/52). Importantly, although 90.3% (n = 93) of patients had thought about their choice of surrogate, only 63.4% (59/91) had discussed it with their clinician. The majority of patients had not discussed their religion/spirituality with their clinician (74.8%, 77/103) and most of them (85.7%, 66/77) reported that they did not want to.

Table 1.

Patient Discussions Regarding Prognosis Management, Surrogacies, Advance Care Planning, and Social and Spiritual Support

Type of discussions		% (n)		% (n)
Prognosis and management		N = 102
Has a doctor or a nurse talked to you about what to expect in the future with respect to your heart failure?	Yes	76.5 (78)
	No	23.5 (24)
				N = 24
If not, would you like to discuss this information with your doctor or nurse?			Yes	87.5 (21)
			No	12.5 (3)
		N = 100
Has a doctor or a nurse told you about what to expect in the future with respect to your prognosis?	Yes	68.0 (68)
	No	32.0 (32)
				N = 31
If not, would you like to discuss this information with your doctor or nurse?			Yes	80.6 (25)
			No	19.4 (6)
		N = 102
Do you still have questions about your condition?	Yes	63.7 (65)
	No	36.3 (37)
Surrogate and advance planning
		N = 103
Have you thought about someone who could make decision about your medical care for you if you become too sick to make them for yourself?	Yes	90.3 (93)
	No	9.7 (10)
				N = 91
If yes, have you talked to your doctor or nurse and let them know who that person would be?			Yes	64.8 (59)
			No	35.2 (32)
		N = 101
Has your doctor, nurse or any other healthcare provider ever talked to you about what kind of care you would want in case you got very sick and could not talk to the doctors directly?	Yes	46.5 (47)
	No	53.5 (54)
				N = 52
If not, would you like to discuss this information with your doctor or nurse?			Yes	59.6 (31)
			No	40.4 (21)
Social and spiritual support		N = 103
Do you have any help or support available at home for times when you might need it?	Yes	82.5 (85)
	No	17.5 (18)
		N = 51
Do you have friends, family, or other form of support who does not live with you whom you can call if you need help?	Yes	90.2 (46)
	No	9.8 (5)
		N = 103
Has a nurse/doctor ever asked about your religion/spirituality	Yes	25.2 (26)
	No	74.8 (77)
				N = 77
If not, would you like to talk to your doctor or nurse about your religious or spiritual beliefs and practices?			Yes	14.3 (11)
			No	85.7 (66)

Patients who reported having had discussions about what to expect regarding their HF were younger (50.3 years; 95% CI: 53.5–64.9 vs. 59.2 years; 95% CI: 47.2–53.5; p = 0.007) (Table 2). Similarly, patients who reported that they had been asked about their religion or spirituality were younger (43.1 years; 95% CI: 38.0–48.1 vs. 55.9 years; 95% CI: 52.8–58.9; p = 0.0001). Men were more likely than women to report having discussions about future expectations regarding their HF (83.6% vs. 62.9%; p = 0.02), prognosis (78.5% vs. 48.6%; p = 0.002), and ACP (56.1% vs. 28.6%; p = 0.01). Having had or wishing to have discussions about prognosis, ACP, and social and spiritual support was not associated with QoL, number of years living with HF, or hospitalizations.

Table 2.

Patient Characteristics Associated with Having Had Discussions about Prognosis, Surrogate Decision Making, and Advance Care Planning

				Gender			Race
Type of discussions		Age, mean (95% CI)	p	Women % (n)	Men % (n)	p	White % (n)	Other % (n)	p
Prognosis and management
Has a doctor or a nurse talked to you about what to expect in the future with respect to your heart failure?	No	59.2 (53.5–64.9)	0.007	37.1 (13)	16.4 (11)	0.02	25.4 (17)	20.0 (7)	0.5
	Yes	50.3 (47.2–53.5)		62.9 (22)	83.6 (56)		74.6 (50)	80.0 (28)
Has a doctor or a nurse told you about what to expect in the future with respect to your prognosis?	No	56.3 (50.5–62.1)	0.08	51.4 (18)	21.5 (14)	0.002	30.8 (20)	34.3 (12)	0.7
	Yes	51.1 (48.0–54.2)		48.6 (17)	78.5 (51)		69.2 (45)	65.7 (23)
Do you still have questions about your condition?	No	51.8 (48.1–55.4)	0.5	57.1 (20)	67.2 (45)	0.3	58.2 (39)	74.3 (26)	0.1
	Yes	53.6 (49.1–59.1)		42.9 (15)	32.8 (22)		41.8 (28)	25.7 (9)
Surrogate and advance planning
Have you thought about someone who could make decision about your medical care for you if you become too sick to make them for yourself?	No	53.1 (44.2–62.0)	0.9	11.4 (4)	8.8 (6)	0.7	7.4 (5)	14.3 (5)	0.3
	Yes	52.6 (49.6–55.6)		88.6 (31)	91.2 (62)		92.6 (63)	85.7 (30)
Has your doctor, nurse, or any other healthcare provider ever talked to you about what kind of care you would want in case you got very sick and could not talk to the doctors directly?	No	50.5 (46.6–54.4)	0.1	71.4 (25)	43.9 (29)	0.01	50.0 (33)	60.0 (21)	0.3
	Yes	55.2 (51.3–59.2)		28.6 (10)	56.1 (37)		50.0 (33)	40.0 (14)
Social and spiritual support
Do you have any help or support available at home for times when you might need it?	No	57.8 (51.7–64.0)	0.09	20.0 (7)	16.2 (11)	0.6	17.6 (12)	17.1 (6)	0.9
	Yes	51.5 (48.4–54.7)		80.0 (28)	83.8 (57)		82.4 (56)	82.9 (29)
Do you have friends, family, or other form of support who does not live with you whom you can call if you need help?	No	56.0 (51.4–60.6)	0.98	17.6 (3)	5.9 (2)	0.2	9.1 (3)	11.1 (2)	0.8
	Yes	56.1 (51.9–60.3)		82.4 (14)	94.1 (32)		90.3 (30)	88.9 (16)
Has a nurse/doctor ever asked about your religion/spirituality?	No	55.9 (52.8–58.9)	0.0001	77.1 (27)	73.5 (50)	0.7	75.0 (51)	74.3 (26)	0.9
	Yes	43.1 (38.0–48.1)		22.9 (8)	26.5 (18)		25.0 (17)	25.7 (9)

Discussion

Conforming to national and international guidelines, among the patients with HF that we surveyed, discussions about ACP were very common, although not universal. Of the minority who did not have ACP discussions, the vast majority would like to have them. Although nearly all patients had thought about a surrogate decision maker, only two-thirds had discussed their choice with a clinician. Only a minority of patients had discussed spirituality or religion with a clinician, and most patients indicated that they did not wish to have them.

The fact that most patients reported having conversations with their clinicians about HF management, prognosis, and choice of surrogate shows that in this setting clinicians are not waiting till end of life to discuss them. Still there is more work to be done to make these important conversations universal as most patients who did not have these discussions want to have them. Patients may be waiting for their physician to broach the subject,⁶ and it is not clear why clinicians did not raise these issues with more patients given the high baseline prevalence. Some physicians may be concerned that these conversations could lead patients to lose hope, although if this reason was common, we would expect fewer conversations overall.⁷ Some clinicians may be initiating these conversations only at the point where they feel there are limited disease-directed treatments available; however, these conversations were equally common among people with classes II and III HF.¹³

A potential “safe entrance” for clinicians to initiate potentially sensitive topics could be discussion regarding choice of surrogate decision maker. Despite the majority of patients having thought of a surrogate decision maker, less than two-thirds had shared this important information with their clinician. Alternatively, clinicians who are not comfortable or who feel the discussion would be too difficult may consider referring their patient to palliative care specialists.¹⁴ Healthcare systems could implement programs to routinely address these issues with patients.

Only a minority of patients wanted to talk with their clinician about spirituality or religion. These findings are in marked contrast to previous research that found that many patients wanted to discuss these issues and may be specific to our patient population.^15,16 Data showing that greater spirituality among patients with HF is strongly associated with less depression¹⁶ and improved QoL should encourage clinicians to raise the issue.¹⁷

Interpretation of these findings should be tempered by the following limitations. The study was collected between July 2007 and November 2009, and responses to specific questions may have changed over time. Self-report surveys were used to collect data, which may be prone to error associated with recall. In an attempt to reduce respondent burden, we chose not to use longer instruments to assess religiosity and spirituality. Our assessment of religiosity and spirituality although not validated against a known “gold standard” was developed with experts in the field to ensure content and face validity. Generalizability may be limited, as our study was conducted at one center. Although our patients were younger than the typical patient with HF, they did have classes II and III HF and thus findings would be expected to apply to other patients. Half of patients approached declined participation in our study. Unfortunately, we did not collect any basic information to assess representativeness of our patients and potential nonresponder bias.

Our findings show that ACP discussions are common among people with HF, although still not universal, and provide support for efforts to integrate such conversations routinely into care. These conversations are critical to ensure that care aligns with patient preferences. Future research could include what factors promote these discussions, determining whether and how they are documented in the medical record, evaluating routine assessment of these issues into clinical practice, determining when referral to palliative care experts is most needed, and assessing the impact of these discussions on patients.

Footnotes

Acknowledgments

We thank all patients who participated in this study. We would like to thank the doctors and nurses involved with the HF clinic for allowing us to recruit patients.

Funding provided by the Alafi Family Foundation and the Frank H. Netter School of Medicine at Quinnipiac University supported this study.

Author Disclosure Statement

No competing financial interests exist.

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