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ARTICLES: Heart Failure: Psychosocial Factors

Readmitted Patients With Heart Failure Sick, Tired, and Symptomatic

A Qualitative Descriptive Study From a Quaternary Academic Medical Center

Hoke, Linda M. PhD, RN, CCNS, AGCNS, CCRN, WCC, FCNS; Bradway, Christine PhD, CRNP, FAAN, AGSF; Trotta, Rebecca L. PhD, RN; Wald, Joyce DO, FACC

Author Information
The Journal of Cardiovascular Nursing: 5/6 2022 - Volume 37 - Issue 3 - p 248-256
doi: 10.1097/JCN.0000000000000791
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Abstract

Heart failure (HF) is a chronic condition and a costly, growing national epidemic. Currently, HF affects more than 6.2 million people in the United States1; this is expected to increase to more than 8 million by the year 2030.2 Furthermore, future US direct (medical costs of HF) and indirect (lost productivity from morbidity and premature mortality) financial costs are projected to increase from $31 billion in 2012 to $70 billion in 2030,2 making HF a significant and increasing concern for the US healthcare system. Heart failure 30-day all-cause readmission rates range from 17.1% to more than 20%.3–6 These readmissions are difficult for patients and families, associated with negative health outcomes, and costly for health systems penalized for an admission to a hospital within 30 days of a discharge from the same or another hospital.7 Because of the high prevalence of HF and the impact on patients, family members, and healthcare systems, it is crucial to understand what factors are associated with readmission.8

Self-care management is an active, deliberate decision-making process that includes treatment adherence, symptom interpretation and management, or response to symptoms when they occur.9,10 Self-care management requires daily attention to avoid decompensation.11 Persons living with HF are typically older and have multimorbidities, increased frailty, and frequent hospitalizations, requiring a multidisciplinary approach. Because HF is chronic and progressive, patients need to learn and assimilate a large body of knowledge to manage their symptoms for improved quality of life.12–15 Patients are challenged with the medical management of HF as well as the lifestyle changes HF imposes. This includes self-care behavior modifications to change existing habits and social practices.12,16 Education and lifestyle adjustments may be difficult to adhere to yet, if not addressed, can lead to symptom distress, frequent hospital admissions, and readmissions.

Education of patients with HF and their families is critical and often complex. Failure to understand and adhere to discharge instructions is often a cause of HF exacerbation, leading to subsequent hospital readmission.17 This includes the importance of patients with HF understanding how to take their medications and when to report increased signs and symptoms of HF post discharge.18

Numerous study authors have identified both clinical and nonclinical factors associated with HF 30-day all-cause readmission. Clinical factors include multimorbidity,8,19,20 respiratory disease, renal failure, diabetes,8,19–21 depression, and anxiety.8,20 Heart failure in isolation is rare; multimorbidity complicates the clinical management20 and poses challenges as patients attempt to recognize symptom exacerbation.22

Nonclinical and sociodemographic factors that have been shown to predict 30-day all-cause readmission include previous hospitalization for HF,8,21 longer length of stay on index admission,19,23 male gender,3,19–21,23,24 age older than 60 years,3,19–21,23,24 Medicare coverage,8,19,25 being retired or unemployed,23,25 and living alone.20,24,25 Authors of recent studies suggest that race may be dependent on the patient population studied; for example, some identify Black race8,19,25 as a predictor of readmission, whereas others report White race21,23,24 as a readmission predictor.

Patients', family caregivers', and healthcare clinicians' perspectives regarding HF self-care management and reasons for hospital readmission have been described, using qualitative and mixed method approaches.25–27 In 1 study26 of seriously ill (receiving palliative care, given a diagnosis of HF or cancer) male veterans readmitted within 30 days of hospital discharge, authors examined patient perspectives regarding readmission etiologies. Potentially avoidable reasons for readmission were identified including poor quality care, access to care, and desire for caregiver support. In addition, for this population, many readmissions may not be preventable.

Patients view self-care as an “adaptation” to living with a chronic condition, HF, to maintain their independence and quality of life.28 In a study of 30-day readmission for patients with HF,27 self-care was described as a struggle between adherence and adaptation. Adherence to medical recommendations was part of a spectrum in which recommendations were adapted to conform with individual circumstances. However, when patients experienced increasingly distressing symptoms, they returned to the hospital that they viewed as the safest place for recovery. Ahmad and colleagues25 examined 30-day readmission risks using a mixed methods approach. They grouped study subjects based on demographics, clinical characteristics, and views on HF management. They concluded that predicting 30-day readmission is challenging and that all patients with HF are at risk of readmission.

Clearly, reasons for 30-day readmission of persons living with chronic HF is a complex phenomenon. Moreover, despite research and detailed descriptions of patients', caregivers', and clinicians' perspectives, etiologies are likely heterogeneous and multifactorial.29–31 Therefore, to advance understanding of this important issue, we conducted a qualitative descriptive study. The aims were to gain an understanding, from the patient perspective, of (1) how they viewed the discharge instructions and (2) how they felt emotionally and physically when they arrived home and when they were readmitted to the hospital in less than 30 days. A better understanding of the patient perspective regarding discharge instructions and readmission experiences is an important step in informing future nursing interventions for extremely vulnerable persons living with chronic HF.

Methods

For this study, we used a qualitative descriptive approach. Patients' perspectives regarding readmission were organized and analyzed around the 6 questions used in the interview guide (see Table 1). Interview questions were developed based on the investigators' clinical expertise and review of existing literature focused on readmission of persons with HF. A purposeful convenience sample of 22 patients admitted to a progressive cardiac care unit during a 1-year period between August 2016 and August 2017 at 1 large, quaternary academic medical center in the northeastern United States comprised the study sample. The following inclusion criteria were adopted: (1) all-cause, unplanned 30-day readmissions for HF defined as unintentional readmissions, not a scheduled part of a patient's plan of care; (2) speak and read English; (3) 18 years or older; and (4) willing to participate in a face-to-face interview. Patients were excluded if they (1) were non–English speaking, (2) had severe cognitive impairment screened by means of chart review, (3) admitted as a scheduled readmission, (4) unable or unwilling to provide consent, and (5) readmitted from a skilled nursing facility or rehabilitation facility.

TABLE 1 - Interview Questions
1. Tell me about your discharge instructions?
2. How did you feel when you left the hospital?
3. Describe how you were feeling emotionally once you got home?
4. Walk me through a normal day for you when you feel good?
5. Walk me through a not normal day for you when you do not feel good?
6. Describe how you were feeling leading up to this admission?

This study was approved by the institutional review board of the study hospital where patients were recruited and enrolled. Potential participants were identified by means of a combination of an electronic medical record query that generates a daily census of patients admitted with HF or an HF-related diagnosis, chart review by the principal investigator (PI), and direct contact with the clinical nurses on the progressive cardiac care unit. The PI met with potential participants, introduced them to the study purpose, and responded to any questions or concerns. Participants were made aware their participation was completely voluntary and they could end the interview at any time. Participants were not compensated for participation.

After the patient was fully informed of the study aims and verbally consented, sociodemographic data were collected using a brief investigator-developed questionnaire. Clinical characteristics of the patient were obtained from the participants' electronic medical record. A semistructured interview guide was developed by study investigators, piloted on 2 HF patient volunteers (who were not enrolled in the study), and used to guide individual interviews (see Table 1). Probes were used as needed to elicit further information (eg, “What specific words would you use to describe how you were feeling?”). The PI conducted all face-to-face interviews with participants at their bedside, and all interviews were scheduled to accommodate participants' schedules and minimize burden. Interviews lasted, on average, 20 minutes. With permission, interviews were audio-recorded. Audio files were sent electronically via a secure server to Same Day Transcriptions, a professional transcription service; transcribed verbatim with triple-check accuracy into a text document; and then securely transferred back to the investigators. Text transcriptions were compared for accuracy with the audiotapes, and all identifying information was removed to ensure anonymity. Deidentified transcripts were used for data analysis.

Directed content analysis was used for data analysis32 after all 22 interviews were completed and transcribed. First, 2 research assistants separately read the interview transcripts and completed line-by-line coding using a Word document and Excel spreadsheet organized around the 6 interview questions. This involved completing first-level coding to identify small meaning units (codes). Next, a third research assistant reviewed and grouped the codes together to form categories. Finally, the PI and a consultant with extensive expertise in qualitative descriptive methodology confirmed data redundancy,33 reviewed the codes and categories, and came to agreement on the final categories and overarching theme that emerged from the data.34,35

We enhanced trustworthiness33 using these approaches: To increase the probability of high credibility and dependability, we followed a process of co-coding, dialogue, and agreement by all authors on study findings. We addressed transferability by providing detailed descriptions of our process for recruiting and selecting participants as well as procedures for data collection. To minimize investigator bias (eg, confirmability), we practiced reflexivity during investigator team meetings, including discussions of how, or if, preexisting notions of the nursing care involved for persons with HF could impact study findings. We also developed and continually updated an audit trail that included a detailed account of decisions made during the iterative process of data analysis.

RESULTS

Sociodemographic and Clinical Characteristics of the Study Sample

The mean (SD) age of the participants (N = 22) was 56.3 (10.51) years (range, 23–69 years). Most participants were male (n = 18), married (n = 14), and living with a partner (n = 19) (Table 2). Most were classified as New York Heart Association class III (n = 13) with reduced ejection fraction (n = 20) on home inotrope therapy (n = 13) and had multimorbidities including hypertension (n = 14), renal impairment (n = 14), dysrhythmia, (n = 14), and cardiovascular disease (n = 11) (Table 3). Participants' average length of stay before rehospitalization lasted an average of 9.95 days, with an average number of days at home between admissions of 15 days. Readmission hospital stays varied (1–28 days), with 2 participants receiving a heart transplant during this admission.

TABLE 2 - Sociodemographic Characteristics
n (%)
Age, mean (SD), range, y 56.2 (10.51), 23–69
Gender
 Male 17 (77.3)
Education
 High school 4 (18.2)
 Trade school 2 (9.1)
 2-y college 11 (50)
 University degree 5 (22.7)
Race
 White 13 (59.1)
 African American 7 (31.8)
 Asian 1 (4.55)
 Other 1 (4.55)
Marital status
 Married 14 (63.6)
 Widowed 2 (9.1)
 Divorced 2 (9.1)
 Single 4 (18.2)
Living with partner
 Yes 19 (86.4)
Job status
 Employed 5 (22.7), 22.72
 Unemployed 4 (18.2), 18.18
 Disability 9 (41), 40.90
 Retired 4 (18.2), 18.18

TABLE 3 - Clinical Characteristics
n (%)
Type of heart failure
 HFrEF 20 (90.9)
 HFpEF 2 (9.1)
NYHA class
 I 0
 II 2 (9.1)
 III 13 (59.1)
 IV 7 (31.8)
Ejection fraction, mean (SD), range 22.7 (15.1), 10–65
Medications, mean (SD), range 14.7 (4.25), 7–24
Days in hospital before discharge, mean (SD), range 9.95 (15.7), 3–23
Hospitalizations in the past 12 mo, mean (SD), range 3.5 (2.2), 1–9
Present length of stay in hospital, mean (SD), range 17.1 (33.6), 2–71
Days at home before readmission, mean (SD), range 15.1 (8.7), 1–28
Comorbid conditions 14 (63)
 Hypertension 14 (63)
 Renal impairment 14 (63)
 Dysrhythmia 11 (50)
 Cardiovascular disease, ie, MI, CAD, PCI/stent 9 (41)
 Hyperlipidemia 6 (27)
 Pulmonary hypertension 5 (22)
 Cerebrovascular disease 5 (22)
 Sleep disorders 5 (22)
 Thyroid disorder 5 (22)
 Chronic obstructive pulmonary disease 5 (22)
 Diabetes 4 (18)
 Depression/anxiety
Inotropic dependent/milrinone 13 (59)
Internal cardiac defibrillator (includes 1 life vest) 20 (91)
Ventricular assist device 3 (14)
Abbreviations: CAD, coronary artery disease; HFpEF, heat failure preserved ejection fraction; HFrEF, heart failure reduced ejection fraction; MI, myocardial infarction; NYHA, New York Heart Association; PCI, percutaneous coronary intervention.

Qualitative Findings

In reading the transcripts for gestalt, 1 overarching theme emerged: participants were sick, tired, and symptomatic (Table 4). They described discharge instructions as being clear and easily understood. Additional findings are described hereinafter, each categorized and aligned to a specific open-ended question asked during the semistructured interviews.

TABLE 4 - Codes and Major Categories Based on Interview Questions
Questions Categories Codes
1. Tell me about your discharge instructions? The same; Understanding information Clear understanding; The same; Too quick; Figured it out; More involved
2. How did you feel when you left the hospital? Views of health Fine Good; Very good; Not good; Tired; Drained; Difficulty with activity
3. Describe how you were feeling emotionally once you got home? Varied emotions Faith; Frustrated; Good; Depressed; Overwhelmed
4. Walk me through a normal day for you when you feel good? Normal activities Light activity; Isolation; Moderate activity; Socializing; Sleep; No typical days
5. Walk me through a not normal day for you when you do not feel good? HF symptoms; Limited activity; Not normal activities Tired; Increase heart failure symptoms; Tired; Sit down; Bed; Coughing; Every day is good; Sleep; Sleep deprivation; Afraid of activity
6. Describe how you were feeling leading up to this admission? Symptomatic; Range of symptoms Fluid overload; Tired; Breathing; Other HF symptoms
Abbreviation: HF, heart failure.

Tell Me About Your Discharge Instructions?

Participants' impressions were that discharge instructions were clear and that, when they left the hospital, they understood what they needed to do to follow the discharge plan. Most participants said the instructions were like those they had received on previous admissions. For example, 1 participant said: “They were perfectly clear, laid out, nothing out of the ordinary with everything that I've been through before.” In contrast, another participant described differences from past admissions noting that, this time, the instructions were “more involved” because of the addition of a new intravenous medication: “They were a little more involved than usual because they had me on this medication that I got to change daily. So, I had special instructions, I had a nurse come for three days and show me.”

Many participants also noted that their discharge instructions were focused on dietary and fluid recommendations and interjected specific comments about medications when asked about discharge instructions. Our participants took an average of 14.7 pills per day, and some many more than that (“I take about 30 pills a day”). In addition, participants described complex routines for adhering to discharge instructions. A systematic process that included assistance from a family member, use of a pill box, or an alarm reminder on their cell phone was often helpful:

My son got the little blue case, morning, afternoon, nights. So, every day, he puts them in there for me. When I wake up, eat my breakfast, I take it.

My husband bought me like a stand where all the drawers are plastic. I keep them in there, and I take them out. That way I put one aside to take. I put the bottle aside, so I know what I'm doing.

I think I am very good on taking medications. I have to organize them because there are so many…. There have been occasions where I missed, like the midday dose or something like that. But, I do take everything they give me and I try to take it when they say and as much as they say. Sometimes I am a little forgetful and I am a little off, but I am never…like I do not skip doses.

How Did You Feel When You Left the Hospital?

Most participants (n = 15) described themselves as feeling “good” or “very good” when they were discharged from the hospital and related this to having clear discharge instructions. One participant said: “I felt pretty good. I felt relatively healthy. I felt like my heart was in better shape.” For those who did not feel “good” (n = 7), descriptions included feeling “tired” and “drained,” and having “difficulty with activities.” One participant noted: “My energy wasn't all there. I was just tired still. But I could not tell if it was just me still recovering from being in the hospital. But, overall, I would just say my energy never came back to normal.”

Describe How You Were Feeling Emotionally Once You Got Home?

Although most participants felt physically well leaving the hospital, their emotions varied from good to depressed, frustrated, and overwhelmed. Many added that they relied on faith to support them with their HF. Examples highlighting the range of emotions include the following:

Emotionally. Oh my god, I was so excited I could not believe it. I was finally home. I was happy as could be.

Kind of drained. Kind of depressed. I've been in and out of the hospital so many times.

Not bad. I mean, it's a process when you know you need a heart and that's always on your mind. So, you think about it all the time. I tried going into my faith and just allow God to try to carry me through this and not think about it so much.

I am not a pessimistic person. I have strong beliefs in God. Believe in Jesus Christ as my personal savior. And I'm just so into just let thy will be done. That's the way I feel. I'm not depressed being here at all whatsoever. I'm acceptant of where I am, and I believe I will defeat all these problems that I have physically. And I do not think I'm going anywhere, and I'm a very strong person and if it is time for me to go, I'm prepared to go meet my maker.

Fine. I just felt like I have to do this. It's no big deal…. No. I do not feel depressed at all.

Walk Me Through a Normal Day for You When You Feel Good?

Here, participants responded in terms of the types of activities they were able to engage in. Four participants characterized a “normal, good day” as being able to go to work (outside their home) or socialize with friends (eg, going out for lunch or taking ride). One participant said: “Well, when I feel good, I'm going to work. I get up at ten and to go work at one and I come home at nine.” Most, however, even on a “good” day, described very limited activities, primarily ones that did not involve socializing with others or going out of the house. For example:

When I'm feeling good, believe it or not, I mean it's at the point now when I try not to do anything more than I have to because once I'm there and if I get overly fatigued then it seems like it takes me longer to get back to the so-called normal. It takes a while to get that reserve built back up. So, any more of, as far as exercise, it's walking through a store slowly, in a nice slow pace. That's about the extent of exercise and again I try not to overdo anything whether lifting clothes baskets or anything like that, I'd stay away from it.

Walk Me Through a Not Normal Day for You When You Do Not Feel Good?

All participants described a “not normal” day as involving increased HF symptoms such as coughing, sleep deprivation, sitting or sleeping upright in a chair, being “afraid” of doing activities, and not being able to do much of anything at all. Descriptions frequently included specific events that stood out in their memory of a “not good” day, such as the following:

When I don't feel good, I pretty much just sit on the sofa. I'm not one to lay in bed. I can't stand it. It's just driving me crazy being here. But I go downstairs. I get myself something to eat, and I just sit on my recliner most of the day. Phones calls, text messages, computer, that kind of stuff. I don't do a lot of moving around. Still watch my weight and all my vital signs. And if I felt really bad, I'd either text my buddy—that's my cardiologist…there wasn't a lot of activity, wasn't a lot of movement.

I can't keep up…my shortness of breath would stop me from moving with any speed. I'm tired, fatigue quickly…. I don't want to talk to nobody. Bored. Boredom.

When you're not feeling well, wow. When you're not feeling well, the fatigue is like you're carrying weights, 20-pound, 30-pound weights in your hand. And your arms are dead tired. And I equate it to if you're ever exercising or doing anything that where you would exert yourself. That feeling of, wow, I'm really tired. Well that's what you get trying to shave or brush your teeth or going to shower. And then you sit down and you just try to get your breath and you try to get your energy back.

Describe How You Were Feeling Leading Up to This Admission?

Participants were well versed in what it felt like to experience an increase in HF symptoms, and although some described “just not feeling well,” many used medical terminology to answer this question. This included terms such as fluid overloaded or mentioning specific medications, for example:

Yeah, well it was mainly fatigue and shortness of breath. They were the main complaints and I felt fluid overloaded. I felt it in the past. It wasn't anything new. I was just basically trying to get through the holiday if I could, but it got to the point where I needed to see the doctor.

Because Monday of this week, I don't know the exact date, I got shocked from the pacemaker. We saw him [the doctor]. They did bloodwork and my numbers were high. So, that's why they wanted me to come back in and do a right heart cath.

I felt sick, I threw up a lot, I was feeling a little swollen, and I felt like I couldn't sleep, and so I called the doctor. But prior to me calling the doctor—before I called the doctor—I was trying to see if I could take some pills—what do they call them? Lasix Furosemide—to see if I could bring some of the water out, the fluid…. So they think I might [need] the Lasix through IV, and that's what they've been doing since I've been here.

DISCUSSION

The aims of this study were to gain an understanding, from the HF patient perspective, of how participants viewed their discharge instructions, how they felt emotionally and physically when they arrived home, and how they felt when they were readmitted to the hospital in less than 30 days. Demographic and clinical quantitative data reveal a group of medically sick patients, with multimorbidities, class III or IV HF, implantable cardioverter defibrillator, and polypharmacy, including inotropic therapy.

Our participants were younger and categorized as higher HF classes than those from 2 studies of self-care, interpretation, and understanding of HF symptoms that used samples with class I and II HF and an average age of 65 years.13,36 In contrast, our participants were similar to those from most other studies concerning HF in terms of reduced ejection fraction,37–39 multimorbidities,15,20,30,38,40 polypharmacy,30,40 and coming from an academic medical center.4

Qualitative findings add to the literature by providing an understanding of HF participants' experiences with hospital admissions, discharges, and readmissions. Our participants describe good discharge instructions, feeling well enough to be discharged, and being adherent with their medications; however, when they experienced distressing symptoms, they were readmitted to the hospital. These overarching findings are congruent with those reported by a group of 28 individuals who participated in a qualitative descriptive study focused on reasons for hospital readmission.30 As with our participants, reasons cited for readmission were multifactorial and included distressing symptoms and unavoidable progression of illness despite good self-care and adherence.30

Aim 1: How Participants Viewed the Discharge Instructions

Current evidence strongly supports education of patients with HF and family members, especially during care transitions.17,18,41,42 These findings resonate with the experiences of our participants who described clearly understanding discharge instructions, bringing in family members as needed, and, in most cases, doing everything possible to adhere to discharge instructions.

Studies and recommendations endorsed by leading organizations provide advice for improving the discharge instructions to prevent readmission and reduce the burden of following a complex treatment regimen.43 For example, evidence-based guidelines regarding discharge instruction performance measures for adults with HF focus on the quality of the information provided.44 This includes patient self-care education specific to care transitions, quantitative symptom and activity assessment, and symptom management to serve as the basis for monitoring and titrating treatment regimens. Whereas none of our participants talked about their discharge instructions as a “burden,” many related complex schedules and described the planning involved in following daily HF assessments (eg, checking weights) and recommended instructions for symptom management. Consistency between our findings and previous evidence further underscores the complexity of discharge planning, the possibility that patients and providers may have different perspectives on readmission etiologies,45,46 and the importance of supporting strong patient, family, and provider communication and interactions.47

Patients with HF have a large pill burden.40 This includes HF-specific medications and those treating their many noncardiac comorbidities; therefore, medication management is an essential component of discharge planning. Much of the literature describes challenges with access to medications45 or medication nonadherence.10,45,48 This contrasts with what we heard from the participants in our study. For example, despite taking an average of 14.7 pills per day, no one mentioned lack of access to medications, medication nonadherence, or poor medication teaching attributing to their readmission. Instead, our participants went into great detail explaining sophisticated strategies, the importance of taking all medications as directed, and not missing a dose. Our participants, who overall were sick, tired, and symptomatic, seem to be more like those described by Ahmad and colleagues,45 who concluded that, rather than seeing reasons for readmission as connected to specific tasks (eg, medication taking, weight management), reasons for hospital readmission may simply be due to the fact that these patients became sicker.

Aim 2: How Participants Felt When They Went Home and Up to Being Readmitted

In addressing this aim, participants focused on emotional responses associated with discharge and readmission and described HF symptoms and how those symptoms impact daily life and activities.

Emotional Responses, Including Spirituality

Once participants were home, they described varied emotions from “good” to “depressed,” “overwhelmed,” “challenging,” and frustrated.” Depression in HF is a common theme20,45,49,50 and can negatively affect self-care management.10 The lives of patients with HF can be disrupted and shrouded with uncertainty and with feelings of negative emotions such as anxiety, fear, anger, and depression, when treading between life and death.48 Lockhart and colleagues'49 participants used words such as “puddle of despair” and “down in the dumps” to describe their emotions, and participants in another study51 described this experience as “living scared.” These resonate with words our participants used such as “overwhelmed,” “challenging,” and “frustrated.” Interestingly, our participants who were waiting for a heart transplant talked about their emotions in a more positive way, describing hope and an end to their HF symptoms. These findings contribute to emerging scholarship focused on this subpopulation of persons with end-stage HF awaiting transplant; in another study, 2 patients awaiting heart transplant also described a lack of severe anxiety and depression and highlighted the “great importance” of hope.52

In addition to describing emotions, our participants told us how they managed a range of emotions. Examples focused on spirituality, including faith as something they were able to rely on to carry them through this experience. Others have highlighted spirituality and faith as important to persons living with HF. For example, in 1 study, patients with HF turned to spirituality to seek solace and reported that believing in a higher power was helpful in dealing with their condition or deciding their future fate.50 For others, spirituality enables coping with life and improves overall quality of life.51

Heart Failure Symptoms, Daily Life, and Daily Activities

Patients with HF have significant symptom burden and often use common medical terms, such as shortness of breath, when reporting potential etiologies for readmission.26,27,30,31,45,46,53 Moreover, multimorbidity complicates self-care management20 and makes it difficult for patients to recognize and interpret subtle or vague HF symptoms.13,46 In 1 study, fatigue was identified as a cardinal symptom of HF, yet patients were challenged to interpret it as a symptom unless it occurred in combination with other, more typical, HF symptoms such as weight gain.15 Our participants experienced HF symptoms post hospital discharge similarly, describing typical HF symptoms (eg, shortness of breath, fluid overload) as well as atypical, vague symptoms (eg, slowing down, needing to rest more, being tired) in the days leading up to their readmission. Moreover, for most of our participants, even a “good” day involves a complex routine and many challenges. These include living with limitations in functional status, changes in activities of daily living, reduced independence, needing assistance from family members, and recognizing and acting on symptoms that could signal a need for intervention, including hospital readmission.45,50,51

LIMITATIONS

Our findings provide confirmation of previous studies and emerging areas for future scholarship. However, several limitations deserve mention. First, our participants were recruited from a single urban quaternary academic medical center with a referral-based HF/transplantation inpatient service. Bergethon et al4 found patients referred to HF disease management programs were sicker than those in hospitals that do not have HF-specific programs. Hence, the overall applicability of these findings may be limited, especially in community settings where population characteristics vary and payer types are mixed. In addition, our participants were not only living with chronic HF, but many had advanced stage III and IV HF and were receiving advanced therapies, and some were awaiting heart transplantation. These limitations should be considered when interpreting our findings.

CONCLUSIONS

This study adds to the literature by confirming that HF self-care management, including prevention of readmissions, is complicated. Despite clear discharge instructions and feeling “good” or “very good” post discharge, our data reveal a group of sick, tired, and symptomatic patients, with many having difficulty with basic daily activities, and all who required hospital readmission in less than 30 days. Progression of their HF as identified by typical (eg, fluid overload, breathing difficulty) and vague (eg, tired, “bad” days, minimal activity) symptoms was the primary reason our participants felt they were readmitted.

Our findings confirm ongoing challenges and reveal critical questions regarding readmission of persons with end-stage HF. Although we know that ensuring patients are ready for discharge is a key step in reducing unnecessary readmissions,54 how do we know when patients are ready? Would selected patients benefit from staying in the hospital longer,55 and if so, how do we predict appropriate patients while addressing reimbursement and financial realities? Is it that some patients are discharged before optimal volume status is achieved?17 Or, is it that some HF symptoms are best managed in a hospital setting56 and that readmission of chronically ill patients with HF cannot always be prevented?46 Are there similarities and differences in the discharge experience for persons awaiting heart transplant that require further exploration? One recommendation would be to continue to address our findings and consider examining hospice and palliative care opportunities and interventions with patients with advanced stage III or IV HF. Future examinations of these and other questions remain critical to optimizing the discharge instructions and minimizing readmission for patients with HF.

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Keywords:

discharge instructions; heart failure; 30-day readmission

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