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End-stage heart failure patients are a prevalent hospice population with unique symptoms. The purpose of this study was to describe the frequency, severity, and distress of symptoms experienced by heart failure patients receiving hospice care. The relationships among depressive symptoms and symptom prevalence, severity, and distress were also examined. Forty patients with end-stage heart failure in hospice provided demographic information and responses to the Memorial Symptom Assessment Heart Failure Scale and the Profile of Mood States-Depression Scale. Patients reported experiencing a mean of 12.1 symptoms (range, 0-32). The most prevalent symptoms reported were dry mouth (72.5%), lack of energy (70%), and shortness of breath (65%). Symptom prevalence was not indicative of symptom severity and/or distress. Patients endorsed an average of 8 depressive symptoms (range, 0-10). Moreover, most end-stage heart failure patients indicated that they remained hopeful. The findings of the research underscore a need for further research into the symptoms experienced by end-stage heart failure patients in hospice to optimize symptom management by clinicians.
Heart failure (HF) patients are a rapidly emerging hospice population. Although cancer patients still comprise the largest disease group in hospices, they account for less than 50% of patients, whereas a rapidly growing population is the group with heart disease.1 Cardiac disease is the second most prevalent medical diagnosis, accounting for 14% of hospice admissions nationwide,2 with HF being the most common designation. Patients with HF endure numerous physical and emotional symptoms. Research indicates that patients experience sustained symptoms of shortness of breath, edema, dry mouth, fatigue, pain, anxiety, sadness3 and depression that adversely impact quality of life.4 Importantly, depression is a common comorbidity among HF patients that is frequently overlooked.5
Symptom management in the outpatient1 and inpatient5 settings continues until end-stage disease may bring patients to a hospice. Hospice services can mitigate the infirmities of HF by focusing on symptom management.6 In the hospice setting, the average length of stay for HF patients (mean [SD], 54  days) is longer than for cancer patients (mean [SD], 27  days).2 This puts HF patients at an advantage in that they are better able to benefit from the management of patients' symptom prevalence, severity, and distress and support of quality of life offered by hospice team members.
In this research, symptoms from the Memorial Symptom Assessment Scale-Heart Failure (MSAS-HF), such as fatigue, dyspnea, edema, loss of appetite, and pain, were examined. Evaluation of depressive symptoms using the Profile of Mood States-Depression Scale (POMS-D) experienced by HF patients in hospice care was included to provide a more holistic picture of the end-stage HF patient upon admission to hospice. The purposes of this study were to report the most frequent, intense, and distressing symptoms experienced by HF patients upon admission to hospice home care and to examine the relationships among depressive symptom and symptom frequency, severity, and distress.
This study was a secondary analysis using data from a National Institutes of Health-funded study (R21NR011224) of hospice patients with HF. Only baseline data collected upon admission to hospice were used in this analysis.
The study took place at a large not-for-profit hospice in southwest Florida. This hospice has an average daily census of about 2000 patients, of whom 13% have a diagnosis of HF. At the time the study was conducted, this hospice had an average length of stay that was 120 days, with a median of 30 days.
To be a participant in this research, the patient had to be receiving hospice homecare with support of a family caregiver, and the primary diagnosis of HF was the expected cause of death of the patient. The patient had to have at least a sixth grade education, be able to read and understand English, and be able to pass a cognitive screening tool with a minimum score of 8 on the Short Portable Mental Status Questionnaire.7,8 In addition, participants were excluded if at least 2 of the following 5 symptoms of dyspnea, chest pain, other pain, constipation, and depression were not present at baseline data collection.
The MSAS-HF9 was used to evaluate symptom prevalence, severity, and distress. Zambroski et al9 modified the original MSAS10 to evaluate symptoms specific to HF patients. Zambroski et al3 reported strong internal consistency ([alpha] = . 83-.92) scores on the MSAS-HF. The internal consistency of the MSAS-HF was evaluated as a part of this study, and reliability coefficients are reported in the "Results" section.
For each of the 32 items, the patient indicated whether he/she had experienced the symptom by selecting yes or no. If yes was selected, the severity of a symptom over the last 7 days was assessed using the response metric of (0) not at all, (1) a little bit, (2) somewhat severe, (3) severe, and (4) very severe. For symptoms endorsed by patients, they were then asked to assess the distress caused by a symptom with the response metric: (0) not at all, (1) a little bit, (2) somewhat, (3) quite a bit, or (4) very much. Higher scores on the MSAS-HF indicate greater symptom prevalence, symptom severity, and symptom distress.
The POMS, a 24-item instrument, composed of 2 subscales, assesses an individual's anxiety and depression. The depression subscale (POMS-D) includes 10 items that may be used as a stand-alone measure without the 9 items from the anxiety subscale. The POMS-D, with 15 items, was administered. The response metric, (0) not at all, (1) a little, (2) moderately, (3) quite a bit, and (4) extremely, quantifies the frequency of experiencing a feeling over the duration of a day and over the past 7 days. Higher scores on the POMS indicate higher levels of depressive symptoms. Reliability of the POMS scores as indicated by an [alpha] coefficient of .95 for depression is favorable.11,12 Internal consistency of the POMS-D was evaluated, and the reliability coefficient is reported in the "Results" section.
Standard demographic data were collected to describe the sample: age, sex, ethnicity, marital status, length of time since the patients provided diagnosis, religion, home location, and years of education.
Before the accrual of patient-caregiver dyads, the hospice bioethics committee and the university institutional review board approved the research protocol. Before enrollment in the study, informed consent was obtained from both the patients and their family caregivers. After consent was provided, baseline data were collected. The following case study may provide insight into the population of interest for this research.
A 74-year-old white man was admitted to home hospice care. Six months ago, his cardiologist told him that he was in the end stage of HF. He continued to receive optimal medical therapy, had an internal cardiac defibrillator, and was not eligible for a heart transplant. Over the last 6 months, his systolic blood pressure remained low, and there was evidence of progressive renal insufficiency. In the past 3 months, he was admitted to the hospital 3 times for acute decompensated HF. He and his family, with the assistance of the palliative care team, made the decision during this past hospitalization to begin hospice services in his home. His wife was caring for him in their home.
Patient baseline scores from the MSAS-HF and POMS-D for patients (n = 40) were analyzed using SPSS 19.0. Descriptive statistics (means, standard deviations, and percentages) were calculated to characterize the baseline MSAS-HF and POMS-D responses. Pearson correlations were used to look for relationships between the number of MSAS-HF symptoms endorsed, symptom severity and distress, and depression scores.
Symptom prevalence was the total number of symptoms that a patient endorsed, with a possible maximum of 32 using the MSAS-HF. The frequency of a symptom was the percentage of participants from the sample who experienced that specific symptom. Using the MSAS-HF, patients can report from 0 to 32 symptoms, and the mean (SD) number of symptoms experienced per patient was 12.1 (5.8). Lack of energy, dry mouth, shortness of breath, numbness or tingling of arms or legs, pain other than chest pain, and feeling drowsy were reported by more than half of the patients (Table 1). The least reported symptoms were problems with urination, diarrhea, problems with sexual interest or activity, vomiting, and weight gain. A significant correlation was found between age and the total number of MSAS-HF symptoms endorsed (r = -0.32, P = .028). Time since diagnosis of HF and patient age were moderately correlated (r =0.32, P = .43).
For each of the MSAS-HF symptoms, a mean symptom severity score was calculated using the severity scores assigned to that symptom by patients who indicated that they experienced it. An overall mean severity score for the sample was calculated from the mean severity scores for all symptoms experienced across all participants. The symptoms with the greatest mean severity scores were difficulty breathing while lying flat, lack of energy, pain other than chest pain, difficulty sleeping, constipation, and chest pain. The symptoms experienced with the least severity were weight gain, vomiting, nausea, problems with urination, and diarrhea (Table 1). The severity of symptoms ranged from 0, none, to 4, greatest severity, with a mean (SD) severity of 1.05 (0.09) in this sample. There were strong correlations between symptom severity and the number of symptoms reported (r = 0.98, P < .001) and symptom distress (r = 0.85, P < .001). There was weak correlation between age and the total number of MSAS-HF items endorsed (r = -0.329, P = .041) and reported symptoms severity (r = -0.320, P = .047).
Symptoms reported as the most distressing were weight gain, difficulty sleeping, palpitations, other pain, and numbness/tingling in hands and feet, as seen in Table 1. The least distressing symptoms were feeling irritable, vomiting, problems with sex interest or activity, sweats, nausea, problem with urination, and cough. The distress caused by symptoms ranged from 0, none, to 4, greatest distress. The mean (SD) distress score for a symptom was 1.29 (1.9) in this sample. The level of distress caused by the symptoms that a patient experienced ranged from 6 to 63 and had a mean (SD) of 26.1 (15.4). The internal consistency of MSAS-HF scores in this study was good ([alpha] = .82), further supporting the reliability of the MSAS-HF scores with hospice patients with HF. Pearson correlations between the total numbers of endorsed MSAS-HF symptoms, symptom severity, and symptom distress were very strong, as seen in Table 3. According to this finding, patients experiencing symptoms of HF do so with high severity and distress in hospice.
Scores on the POMS-D can range from 0 to 60 and for this sample ranged from 0 to 27. Patients most frequently endorsed the symptoms hopeless, unhappy, sorry, and unworthy. The highest mean scores were found on discouraged, hopeless, and gloomy (Table 2). The average number of endorsed items was about 8 of a possible 15 (mean [SD], 7.86 [4.85]). The internal consistency for the POMS-D scores in this study was very strong ([alpha] = .99), supporting the reliability of the POMS-D scores in HF patients in hospice.
The distress from MSAS-HF symptoms was moderately correlated (r = 0.48, P < .009) with the number of depressive symptoms endorsed using the POMS-D. No significant relationships were found between number of MSAS-HF symptoms endorsed, symptom severity scores, age, or time since diagnosis (Table 3.).
Most patients were white men, with a very small number of African American patients represented (Table 4). The mean (SD) age of the participants was 79 (11) years. Most patients had had the diagnosis of HF for 1 to 10 years, with 4 patients having had the diagnosis for more than 25 years. Most patients indicated that they had 7 to 12 years of education and were non-Catholic Christians living in suburban areas.
These results indicate that although the average patient in the study was experiencing an average of 12 co-occurring symptoms, there is an overall low severity of the symptoms experienced among HF patients in our sample. There was also an overall low level of distress per symptom in these patients. Similarly, the mean (SD) number of depressive symptoms reported was also lower (7.86 [4.85]).
Heart failure patients experience numerous symptoms in hospice and outpatient settings. Our findings provide a picture of an HF patient leaving the acute care setting and entering the hospice setting. The mean (SD) number of symptoms reported using the MSAS-HF in our sample was 12.1 (5.8), which was consistent with the mean (SD) number of symptoms (11.9 [5.96]) reported from earlier hospice research.13 However, compared with the mean (SD) number of symptoms (15.1 [8.0]) reported in HF outpatient clinics using the MSAS-HF,3 patients in hospice reported fewer symptoms. It is unclear why this might have been the case. It is possible that through years of experience, patients and their families had learned to manage symptoms so that these were less severe and bothersome, or it might be that HF patients in hospice care are more sedentary and are thus less influenced by symptoms that might be experienced if they were leading more active lives. Further study is warranted.
The mean distress scores and mean severity scores for this sample were lower. Plausible explanations might be that patients in the sample experience multitude of symptoms, but a select few of these were experienced with tremendous severity and/or distress. Another explanation may be the age of the HF population, as they may be experiencing a diminution of sensation so that physical symptoms actually do not cause as much discomfort.14 This result may also be happening because of the years of experience that older patients have had in managing their HF symptoms, or it may be that older patients expect to have symptoms as they age, so they discount them to some degree. They may be less active for other reasons, which might cause them to have fewer exacerbations of symptoms. Further study is warranted to address disparities of reported symptom severity in HF patients in hospice.
A higher level of symptom severity was not necessarily indicative of a high level of symptom distress in our sample. This was exemplified by a lack of energy and problems with sex being reported as symptoms experienced with the greatest severity but among the least distressful. McMillan and colleagues13 reported that the severity of dry mouth experienced by HF patients in hospice was not as distressing or bothersome when compared with their lack of energy, shortness of breath, tingling of their extremities, feeling drowsy, or their pain other than chest pain.
Shortness of breath is as a hallmark symptom of HF, one that is common and distressing to patients.15 Our findings of shortness of breath in more than 50% of patients in our sample is consistent with other studies in the outpatient3,4,15 and hospice13 settings. However, difficulty breathing while lying flat (25%) was far less prevalent in our hospice sample compared with the findings from McMillan et al,8 in which 50% of hospice patients reported experiencing shortness of breath upon exertion and at rest.
Lack of energy is the most frequently reported symptom in outpatient HF clinic settings3,4,15 and the second most frequently reported in this study. The high incidence of fatigue (lack of energy) in the hospice setting supports the earlier findings of McMillan and colleagues.13 In addition, fatigue was among the most severe and distressing of the symptoms. Feeling drowsy, a problem that might be expected to accompany fatigue, was reported by slightly more than half of patients and was not reported to be among the most severe or distressing symptoms. About a third of the patients indicated that they had problems sleeping, which may be somewhat related to the greater age of this sample, as sleep problems increase as patients age. Although not seen in most patients, difficulty sleeping was reported as among the most severe and distressing symptoms in our sample; these findings were similar to those from the outpatient setting.3 Interestingly, other symptoms with relatively low frequency but greater severity and distress were shortness of breath when lying flat, as well as weight gain, itching, and palpations. This confirms the need to conduct more systematic assessments of symptoms so that hospice team members fully understand the patients' symptom experiences.
Lack of appetite has been a frequently reported symptom among HF patients in hospice.13 However, in our sample, lack of appetite, nausea, and vomiting were low in reported frequency, severity, and distress. In HF patients, nausea can result from the pressure from an enlarged, congested liver, or gastric stasis.5 Two plausible explanations for these diverse findings are that patients from our sample were receiving management of the symptoms of nausea and vomiting, or they simply had become accustomed to feeling the symptoms over the course of the disease. Further study on the manifestation of anorexia, nausea, and vomiting in hospice is needed to help guide researchers, clinicians, and educators.
Weight gain was the symptom endorsed by the fewest patients, as well as the least severe; however, when it occurred, the patients reported it to be their most distressing symptom. Because the patients had HF over a longer period of time, it is likely that they knew the significance of weight gain and were distressed that their HF might be advancing. Given the etiology of swelling of the extremities in HF along with the prevalence of swelling of the extremities, a greater prevalence of weight gain was expected. Swelling of the upper extremities was among the most endorsed symptoms in our sample, affecting almost half of patients. Reported swelling of extremities in the hospice setting is consistent with end-stage HF. In earlier studies, hospice patients report more swelling and edema13 than did HF patients in outpatient settings.4
Pain that is poorly managed can affect 40% to 75% of end-stage HF patients.16 Although the patients in the sample all had heart disease, only 45% reported chest pain. However, more than half of the patients (52.2%) reported experiencing pain other than chest pain. Comorbidities as sources of the other pain are expected in patients with a median age of 75 years.17 Comorbidities identified as sources of pain include degenerative joint disease, chronic back pain, anxiety, and depression.5,16 In our sample, 16 patients indicated that their other pain was from joint and/or musculoskeletal sources and 5 indicated non-musculoskeletal sources. Of these 21 patients, 8 reported 2 sources of pain, 9 patients reported 3 sources, and 6 reported 1 source. Importantly, this pain was among the highest in symptom severity and distress. Our findings are consistent with the outpatient setting,3 in which other pain was not only more prevalent but also more burdensome/bothersome than chest pain. Because this pain is not related to the patient's reason for hospice admission, there is a risk that it might be overlooked; however, our results suggest that there is a real need for the hospice team to address this "other" pain.
In our sample, men older than 88 years reported greater severity and distress from problems with urination. Problems with sexual interest or activity were reported by less than one-third of the men in our sample, with only 1 woman reporting such problems. Men older than 70 years reported a greater severity in problems with sexual interest or activity. However, problems with sex were reported as one of the least distressing symptoms. This latter finding is not supported by earlier research in which a problem with sex was reported as among the most distressing symptoms in the outpatient setting.16 This difference in distress by setting might be at least partially explained by the age differences in the 2 groups and different expectations.
These findings may provide clinicians and nurses with an important direction for assessment and intervention in older male HF patients in hospice and the outpatient setting. A more thorough assessment of sexual concerns to decrease prevalence and burden of sexual dysfunction in HF patients is needed.3 Findings regarding sexual concerns of HF patients in the hospice and outpatient settings warrant additional research.
The MSAS-HF includes items assessing feelings of worry, sadness, and nervousness. Half of the patients experienced worry. Importantly, worry was one of the most distressing symptoms experienced by HF patients. Although we did not ask the source of the worrying, it might be expected that these patients are worrying about their health and prognosis. It continues to be essential for hospice team members to offer support to patients who are likely to be worrying. In the outpatient setting, previous research has found significant sadness3 and depression in HF patients.4 The role of these emotional issues should not be underestimated; hospice team members need to focus on these issues as they work to improve the overall quality of life of HF patients.
In our sample, the overall number of reported depression symptoms was low, indicating that HF patients in hospice still find pleasure in life. A plausible explanation is that patients were at home and supported by a family caregiver, something that may increase their life satisfaction. We tried to avoid response bias by assessing the patient privately and away from family members to ensure that patients would be frank and honest in their reports of symptoms. This strategy was to encourage patients not to minimize their symptoms for the benefit of family.
Given the goals of emotional support for patients receiving hospice care, addressing all reported symptoms of depression is important. Among the depression items, feeling hopeless led the list, followed by unhappy, sorry, and unworthy as the most frequently reported symptoms as seen in Table 2. A third or more of patients indicated that they experienced hopelessness, unhappiness, sadness, and nervousness. However, the overall severity of these depressive symptoms was low.
The symptom on the depression measure with the highest severity was discouraged, with half of patients rating themselves as quite a bit or extremely discouraged. The cause of the intense feelings of discouragement was not determined by this study, but this is an issue that is extremely relevant to the care of hospice patients with HF as they approach the end of their lives.
When death is eminent, the role of hope takes on an important meaning and may appear to be strong within the dying person and family.5 Indeed, despite being at the end of their lives, more than half of our sample indicated that they still felt hope. What these individuals are hopeful for was not ascertained by our measures. However, unrealistic hope, such as hope for a cure, may become problematic.5 Further exploration of hopefulness and hopelessness in HF patients through research is needed to provide patient information and guidance to members of the hospice care team.
The finding that a relationship exists between symptom distress and depressive symptoms in HF patients in hospice was not unexpected. This confirmation of a relationship may provide clinicians with imperative information and should remind them to be alert for depression in patients with multiple severe and distressing symptoms and to accurately assess and manage symptoms of depression. Importantly, there was no significant correlation between depression and the total number of MSAS-HF symptoms or the severity from those endorsed symptoms.
The total number of MSAS-HF items endorsed and the total number of POMS-D items endorsed were not significantly correlated. The overall number of MSAS-HF items endorsed was consistent with the HF literature.8 It would be logical to expect that patients having more symptoms would perceive themselves as more ill and therefore closer to death; thus, more symptoms of depression might be expected in this group. However, our findings of low POMS-D scores in our sample indicate that this may not be the case and may have resulted in the lack of correlation between the number of MSAS-HF items endorsed and the number of POMS-D items endorsed.
Patient characteristics were similar to those found by Bain et al6 when comparing HF patients and cancer patients receiving hospice services. Most HF patients were predominately white (81.7%) with a mean (SD) age of 85 (9.0) years. Cancer patients using hospice services, who were also predominantly white (75.9%) with a mean (SD) age of 71.1 (13.4) years, were notably younger than the HF patients. Heart failure literature indicates that the age of HF patients in the outpatient setting (not receiving hospice service) varies. Recently, Bekelman et al4 conducted an outpatient palliative care record review in which 70% of the patients were in class III or class IV HF. Of these patients, the median age was 51 years, and only 28% were women. However, other outpatient HF studies reported mean ages of 55 years3 to 74 years18 but consistently report that patients are predominately white men.3,18,19 Our results suggest that hospice patients with HF are older than HF patients in other outpatient settings; this may be related to the fact that most, if not all, are in the final stages of HF, and 40% had had HF for more than a decade. Future research, whether in outpatient or hospice settings, should include more diverse samples.
Current research found that 50% of people diagnosed with HF will die within 5 years.20 In the outpatient setting, most patients reported at least 4 years as the length of time since diagnosis.3,4 In our sample, more than a third of the patients reported a diagnosis for least 5 years, and notably, several patients indicated having the diagnosis of HF for 1 or 2 decades. A plausible source of this discrepancy between the outpatient and hospice settings is that the patients who have had HF for a longer period of time will be more likely to be at the end stage of HF as opposed to the patients in the outpatient setting.
Our findings convey important information for education, research, and clinical practice. Without the specialized training to care for hospice patients, nurses will find themselves unable to provide the necessary symptom control and amelioration of suffering.5 It is important that both formal educational programs at all levels in schools of nursing and continuing education programs be developed to provide this specialized training to prepare nurses and other practitioners to optimally care for hospice patients with HF.
Only very limited research has been conducted in hospice patients with HF, and this study needs to be replicated in a larger and more diverse sample. Further investigation of the source of patients' feelings also is needed. According to the American Heart Association,21 when advanced HF patients discuss their goals, patients typically are concerned about not only how long they will live but also how well they will live. Our findings show that the most prevalent symptoms may not be the most severe or distressing. A symptom may not affect all patients but might have great impact on the quality of life of those who are affected. In addition, the level of symptom severity does not necessarily correspond to the symptom distress. This difference means that clinicians should systematically assess both severity and distress of the symptoms that patients are experiencing.
The small sample size and cross-sectional design were limitations of this research. Thus, it was limited to only the baseline assessment and could not provide a longitudinal perspective on symptoms of HF patients in hospice. The inclusion of patients from only 1 hospice in 1 part of the country may limit the generalizability of the findings. Only patients who were able to self-report and who were receiving home care were included, making all other patients unable to participate. Finally, because of the focus of the parent study on 5 specific symptoms, patients who did not report 2 of these symptoms were excluded; this might have biased the sample to some unknown degree.
A picture of patients from the acute care setting coming into hospice was captured from the research. Study results indicate that HF patients entering hospice care have multiple symptoms requiring management, many of which cause considerable distress. Noteworthy is the finding that symptoms with the greatest reported severity were not necessarily those with the greatest distress, as well as the correlation between symptom distress and depressive symptoms. Clinicians in hospice may consider specifically focusing part of their assessment and management of symptoms by first addressing symptom severity and distress.
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