REVIEW URRENT C OPINION
Palliative care issues in heart transplant candidates Demian Muhandiramge a,b,c, Dioma U. Udeoji a,b,c, Olivia S. Biswas a,b,c, Parag Bharadwaj a,b,c, Leila Z. Black a,b,c, Karen Angelus Mulholland a,b,c, Concetta Moschella a,b,c, and Ernst R. Schwarz a,b,c
Purpose of review Heart failure is a serious condition and equivalent to malignant disease in terms of symptoms burden and mortality. Presently, only a comparatively small number of heart failure patients receive specialized palliative care. A literature search was conducted with the terms, palliative care and heart failure, using the electronic databases of PubMed and MEDLINE. Recent findings Nine-hundred and five articles were reviewed and of those, 78 articles discussed clinical trials in palliative care and heart failure. A complex set of management tools and strategies were used and recommended, including but not limited to lifestyle modification, exercise programs, pain and sleep disorder management, and support in end-of-life care. Limited data are available of using palliative care in heart transplant candidates prior to transplant surgery. Summary Diminishing quality of life prevails throughout the course of chronic heart failure. Therefore, palliative care should be integrated into heart failure management. Heart transplant candidates may benefit from early palliative care involvement independent of the clinical course and outcome. Because of gaps in current scientific literature on palliative care, end-of-life care, and hospice care and the services rendered, further research is necessary to encourage healthcare professionals to introduce palliative care as an early resource in chronic disease progression. Keywords chronic heart failure, heart transplant, palliative care, quality of life
INTRODUCTION Heart failure is one of the major health problems worldwide especially for patients over the age of 65 years with high morbidity and mortality. In the USA, more than 38 million people suffer from heart diseases with more than 550 000 newly diagnosed cases each year [1,2]. Heart failure accounts for 12–15 million office visits per year and over six million hospital admissions in the USA [3,4,5]. The process is typically characterized by periods of stability interrupted by episodes of acute exacerbation with worsening of symptoms, which require more aggressive treatment or hospitalization [3,4,5]. There is no definitive cure for heart failure, although the therapeutic option for a small subset of selected patients is cardiac transplantation. The illness trajectory (and ultimately, the death trajectory) of heart failure is difficult to predict in individual cases [6]. Despite available modern
evidence-based therapies, heart failure patients often have a poor quality of life. The age-adjusted survival rate for heart failure remains lower than many forms of cancer [7,8]. According to the American Heart Association [9], many of these deaths are unanticipated because the rate of sudden cardiac death is six to nine times higher than that of the general population. Although novel life-prolonging treatments have been developed for heart failure, morbidity and mortality remain high. Thirty to fifty a
DSMI, Beverly Hills, bCedars Sinai Medical Center, Los Angeles, California and cUSA, St Joseph Hospital, Chicago, Illinois, USA Correspondence to Ernst R. Schwarz, MD, PhD, 8631 West Third Street, Ste. 1017 East Tower, Cedars Sinai Medical Center, Los Angeles, CA 90048, USA. Tel: +1 310 289 5901; fax: +1 310 289 5917; e-mail: [email protected]. Curr Opin Support Palliat Care 2015, 9:5–13 DOI:10.1097/SPC.0000000000000112
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KEY POINTS The purpose of the article is emphasizing the readers to understand: To define the need and the importance of palliative care in advanced HF. The timing and integration of PC service at proper intervals during the disease trajectory. The importance of communication strategies to emphasize the potential befit of PC within appropriate settings. To achieve maximum symptom palliation while transitioning to end-of-life care.
percent of patients diagnosed with heart failure die within the first year [10,11]. The lack of ability to predict the definite terminal phase of the disease and increased symptom burden [12] results in the need for more symptom-directed and outcomedirected management beyond the traditional medical drug therapy [13]. Several studies of heart failure patients have documented unmet needs, such as enhanced symptom management, assistance with performing daily activities, and psychosocial support [14,15]. Although palliative care supports these concerns, healthcare providers and the general public often equalize palliative care with end of life or hospice care and underutilize this type of care in patients undergoing heart transplant evaluation [16,17]. This care may extend the patients’ survival for months or years after establishing the diagnoses, in particular in heart failure patients undergoing surgery such as cardiac transplantation [18]. It is recommended that palliative care be introduced early in the disease progression to provide more targeted symptoms-oriented and quality-of-life-oriented approaches than the standard medical management [19,20]. Review of current scientific literature revealed that most inpatient referrals occurred in the USA and outpatient care in the United Kingdom [21–23].
METHODS A literature review was conducted to determine the benefits of palliative care in treating and managing chronic heart failure (CHF) and heart transplant patients. In the electronic databases of PubMed (MEDLINE), the key phrases searched were ‘palliative care, heart failure, and heart transplant’. Articles that did not present clinical trials were excluded from the review. A subset of clinical trials written in English language was selected for further analysis 6
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to evaluate the role of palliative care in heart failure and heart transplant candidates.
RESULTS A search using the terms ‘palliative care’ and ‘heart failure’ in combination revealed a total of 905 articles. Using the above terms and ‘clinical trials’ produced 78 articles.
Palliative care The World Health Organization (WHO) [24] describes palliative care as an approach that improves the quality of life of patients and their families with problems associated with life-threatening illness. Such strategies for improvement include prevention and relief of suffering by means of early identification and detailed assessment and treatment of pain and other problems in physical, psychosocial, and spiritual areas. The National Consensus Project [25] and the Center to Advance Palliative Care [26] classify palliative care as a philosophy of care that improves the quality of life of patients and their families facing the problems associated with life-threatening illness. Palliative care interventions are provided to patients and families early in the course of a lifelimiting illness in concert with therapies intended to prolong life. Palliative care is limited to advanced disease (i.e., heart failure patients who are refractory to all treatments) and provided by a specialized team of providers. The term ‘palliative care’ may also refer to care that alleviates symptoms, regardless of a cure by other means or the lack thereof. Thus, palliative care may be used to alleviate the side-effects of curative treatments such as relief from nausea associated with chemotherapy [27]. In the USA, a distinction exists between palliative care and hospice care. Both hospice services and palliative care programs share similar goals of providing symptom relief and pain management [28]. Palliative care services can be offered to any patient without restriction. Palliative care is appropriate for patients with a serious illness like CHF, irrespective of the patient’s likelihood to fully recover, live with the chronic illness disability for an extended time period, or experience disease progression. Hospice care under the Medicare Hospice Benefit, however, requires that two physicians certify that the patient has less than 6 months to live if disease progression continues. If a patient is still living after 6 months in hospice, he or she will not be discharged from the service. A major difference between hospice and palliative care is the patient’s prognosis and his or her decisions regarding curative treatment. Volume 9 Number 1 March 2015
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Heart failure Heart failure is a disabling and potentially deadly condition [29]. Heart failure occurs when the heart is unable to provide sufficient pump action to maintain blood flow for meeting the needs of the body. Common causes of heart failure include myocardial infarction and other forms of ischemic heart disease, hypertension, valvular heart disease, and cardiomyopathy of several causes. In developed countries, approximately 2% of adults suffer from heart failure. For those over the age of 65, the rate increases to 6–10% [30]. The most common symptoms of heart failure are shortness of breath (either from exertion or at rest), cough, chest pain, fatigue, edema (anasarca in lower extremities if not treated), cardiac arrhythmias, and generalized pain [31]. Several medical therapies used to manage heart failure improve symptoms and quality of life in heart failure patients. Some of these medications such as angiotensin-converting enzyme inhibitors/ angiotensin receptor blocker [32,33], beta blockers [34], and aldosterone antagonists [35] have shown survival benefits. Other treatment options to alleviate heart failure symptoms include diuretics, specifically, loop diuretics, which are used to control the patient’s volume status. Dietary interventions such as fluid restriction and reduction of sodium intake can also help reduce recurrence of decompensation. Oral opioids are rarely used but may improve dyspnea and the ventilatory response to exercise [36,37]. All heart failure patients should be screened for sleep-disordered breathing, the impact of sleep disorder on the right/left ventricular function [38].
Heart transplant candidacy and the role of palliative care Heart failure is a lifelong major clinical problem that compromises the quality of life throughout its progress. Patients with severe heart failure have a 1-year to 2-year mortality rate, approaching 50%, despite of advanced medical treatment. As a result, cardiac transplantation has emerged as an important therapeutic approach for selected patients with end-stage heart disease, offering extended survival and improved quality of life. Initial considerations for heart transplantation include: recipient and donor selection (appropriate candidates, absolute and relative contraindications); transplant urgency status; posttransplant cardiac function; allograft rejection (surveillance through endomyocardial biopsy); immunosuppressant therapy, including short-term and long-term side-effects; and longterm sequelae such as infections, diabetes mellitus, hypertension, renal failure, and malignancies [39].
Even though the prolongation of life and improved symptoms are the two major reasons to consider transplantation, a significant morbidity burden persists. This is because of the long-term need for medical therapy, surveillance, and requirement for frequent follow-up visits and life-long medication use. As a result, palliative care can play an important role in the management of medical problems that need long-term follow-up, including posttransplant physical and psychological issues. The prognosis for heart transplant patients following the orthotopic procedure has increased over the past 20 years. As of 5 June, 2009, the survival rates do not only depend on a successful transplant procedure, but also proper implementation of the palliative care approach to address the issues emerging posttransplantation should be taken into consideration. Survival rates post cardiac transplant are as follows: 1 year, 88.0% (men) and 86.2% (women); 3 years, 79.3% (men) and 77.2% (women); and 5 years, 73.2% (men) and 69.0% (women) [40]. Owing to the particular characteristics of morbidity and mortality in heart failure, the main issues to be addressed by palliative care (among others) in CHF patients are as follows: (1) (2) (3) (4) (5) (6)
Pain Quality of life Depression Breathlessness Physical activity Prognosis.
Pain persists in a majority of patients with CHF. However, the symptoms of pain are not well understood. Although shortness of breath and fatigue are commonly identified symptoms, there are limited data available on pain in heart failure patients [41]. Managing pain is important because symptoms occur with prolonged periods of high cardiac-filling pressure caused by fluid overload. Another important issue associated with heart failure is depression. Presence of depression is associated with a worsening of the prognosis, increased risk of death, rehospitalization, and decrease in functional capacity and quality of life. Early detection and treatment of depression should be appropriately handled by cardiologists and family doctors by including a psychosocial assessment, strengthening the doctor–patient relationship, and if necessary, appropriate antidepressants and psychotherapy [42]. Breathlessness or shortness of breath has been called a ’hallmark’ of heart failure and is probably its most common symptom [42]. It is caused by fluid accumulation and congestion of the lungs, which
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leads to poor oxygenation. During the early stages of heart failure, patients may experience breathlessness after physical activity, and as heart failure progresses, breathlessness will occur even at rest, causing the patient to have limited daily activities. Chronic heart failure is typically characterized by periods of stability interrupted by episodes of acute exacerbation. These recurrent decompensations and persistent symptoms lead to decrease in functional capacity and quality of life [43 ]. Being physically active has a promising outcome for patients with advanced heart failure. The main four types of activities to be focused on include: managing the illness, keeping up with daily work, biographical work, and arranging work appropriately and in a timely manner. There is a potential benefit applying the four outlined categories in terms of ‘patient work’ for heart failure patients. Heart failure is associated with marked reduction in physical and mental health, resulting in the decrease of the quality of life. Prognosis can be assessed in multiple ways. Such methods include clinical prediction rules and cardiopulmonary exercise testing. Clinical prediction rules use a variety of clinical factors such as lab tests and blood pressure to estimate prognosis. The Enhanced Feedback for Effective Cardiac Treatment rule stratifies patients and identifies those at low risk of death during hospitalization or within 30 days [44]. Another method used is blood urea nitrogen of less than 43 mg/dl and systolic blood pressure 115 mmHg, which has less than a 10% chance of inpatient death or complications. A very important method to assess the prognosis in advanced heart failure patients is the cardiopulmonary exercise testing (CPX testing). The CPX testing is normally done prior to heart transplantation to evaluate prognosis. Recent guidelines by the International Society for Heart and Lung Transplantation include two parameters that can be used in advance heart failure: heart failure survival score and the use of ventilatory efficiency or minute ventilation to carbon dioxide (VE/VCO2) slope of greater than 35 from the CPX test. However, heart failure worsens over time with an annual mortality rate of approximately 10%, causing severe burden to the patients and their families despite existing advanced medical therapies [45]. Pain is common and prevalent in patients with advanced diseases, including heart failure. One cross-sectional study evaluated the prevalence and severity of pain and other symptoms in acute decompensated heart failure among 100 patients. Of the sample size, 67 patients were male with a mean age of 58 17 years who received a standardized questionnaire [Edmonton Symptom Assessment System (ESAS)] within 24 h of their hospital admission. The exclusion criteria were: less &
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than 18 years of age, admission for a noncardiac reason, active malignancy, history of chronic pain, outpatient chronic pain medication use, and active palliative care service already in place. The findings resulted in a mean ejection fraction of 37 18%. Sixty patients (60%) reported pain of any degree. Patients with lower ejection fraction (40%, n ¼ 61) reported significantly higher pain scores (4.1 3.6) compared with those with a higher ejection fraction (>40%, n ¼ 36, 2.7 3.4, P < 0.05). The most common symptoms associated with acute decompensated heart failure were tiredness, shortness of breath, and a decline in their well being. The most severe symptoms had mean scores of 6.3 2.8, 6.1 3.1, and 5.7 2.6, respectively. Pain is a common symptom, but is not properly recognized. Thus, there is a potential benefit by integrating palliative care and other nonpharmacological/noninvasive interventions to control pain [46 ]. A cross-sectional study evaluating symptoms of generalized or specific pain in patients with chronic stable heart failure was conducted on 62 patients (mean age of 56 13 years, 51 men, 11 women, mean ejection fraction 33 17%). During a routine outpatient clinic visit, each patient completed a standardized questionnaire (ESAS). Severity of pain and other symptoms were assessed on a 10-point scale with 10 being the worst and 0 representing no symptoms. Thirty-two patients (52%) reported pain with a mean pain score of 2.5 3.1. Patients with an ejection fraction of less than 40% (n ¼ 45, 73%) reported higher pain scores than patients with an ejection fraction greater than 40% (n ¼ 17, 27%), with scores being 3.1 3.3 vs. 1.2 1.9, P < 0.001. The study concluded that pain has a significant effect on the patients’ quality of life [47]. A recent prospective longitudinal multiple case study used qualitative interview techniques in regards to the most recent WHO definition of palliative care [45]. Moreover, the study reveals the influence of palliative care in regards to living as actively as possible. A recent meta-analysis that reviewed 23 studies showed that home palliative care provided to patients suffering from chronic medical conditions, including heart failure, preferred to be cared and dying at home. This finding reveals the importance of palliative care in combination with hospice care in the patients’ home settings [48 ]. Another form of palliative care is called Advanced Care Planning (ACP) in which palliative care is provided to patients who have lost the capacity to provide for informed consent. A Spanish analysis revealed that only 22 out of 135 chronically ill patients (16%) received ACP [49]. Palliative care can also play a role in symptom management including pain, dyspnea, and &&
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depression, through nutritional interventions. A double-blinded placebo-controlled study is currently evaluating a 6-month nutritional intervention on symptoms (i.e., edema, shortness of air, and fatigue), health-related quality of life at 3 and 6 months, and time to heart failure rehospitalization or death over 12 months. This ongoing trial randomized 175 patients with advanced heart failure to either the nutritional intervention or the placebo group [50 ]. The Breathlessness Support Service provides palliation for patients with shortness of breath, especially for patients with CHF and chronic lung disease [51 ]. Others evaluated the role of opioid therapy as a means of palliative care to alleviate dyspnea in heart failure patients [52]. A randomized controlled clinical trial assessing the potential benefit of nonpharmacological and noninvasive interventions to relieve breathlessness was conducted. Forty-seven studies were included (2532 participants) and the results were categorized into the following factors: walking aids (n ¼ 7), distractive auditory stimuli (music) (n ¼ 6), chest wall vibration (CWV, n ¼ 5), acupuncture/acupressure (n ¼ 5), relaxation (n ¼ 4), neuroelectrical muscle stimulation (NMES, n ¼ 3), and fan (n ¼ 2). Multicomponent interventions were categorized into counseling and support (n ¼ 5), breathing training (n ¼ 3), counseling and support with breathing-relaxation training (n ¼ 2), case management (n ¼ 2), and psychotherapy (n ¼ 2). The authors concluded that breathing training, walking aids; NMES, and CWV appear to be very effective as nonpharmacological interventions for relieving breathlessness or sedation. In addition, the study concluded that morphine had a potential benefit in reducing breathlessness in patients with CHF, but further research on breathlessness chronic medical conditions including CHF is required because most studies were done on chronic obstructive pulmonary disease patients [53]. A working group of the Association of Palliative Medicine Science Committee conducted a survey to examine the potential benefit of oxygen in palliating breathlessness chronic medical conditions, including advanced heart failure. Results showed that only a few randomized controlled trials were available and that there was no evidence available for heart failure. Recommendations were made on the basis of evidence available such as oxygen needing to be tailored on an individual basis [54]. Despite current maximum medical therapies, CHF patients continue to suffer from severe breathlessness symptoms. To understand the potential benefit of morphine use in palliating breathlessness, a randomized, double-blinded, placebo-controlled, crossover pilot study was conducted on 10 outpatients &
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with NYHA III/IV heart failure. For 4 days, 5-mg oral morphine was administered four times a day (2.5 mg morphine, if creatinine >200 mmol/l) and the washout between active and placebo arms were 2 days. Results showed that six out of 10 patients had improved their breathlessness using morphine. By day 2 on morphine, median breathlessness score dropped by 23 mm (P ¼ 0.022). Sedation scores increased until day 3 (P ¼ 0.013), and declined on day 4, but while improvement was maintained, four out of 10 patients had developed constipation (P ¼ 0.026). There was no significant difference in the placebo group in regards to breathlessness [55]. Another study assessed 40 clinical trials (six studies, neurological; 24 studies, general medical conditions; and 9 studies with patients at the end of life or in advanced disease stages) to address the importance of palliation of depression using antidepressants (most using selective serotonin re-uptake inhibitors (SSRI) and/or nonserotonin monoamine reuptake inhibitors (NSMRI)) on patients with chronic medical conditions, including patients with heart failure. Owing to variability in study design, no conclusions can be drawn in regards to efficacy or tolerability of whether it is dependent on disease severity. This could be because of the following reasons: studies may have been too small to find treatment effects; lack of efficacy was mostly shown in larger trials; or publication bias. The study concluded that the evidence allows for limited conclusions concerning the use of antidepressants. The reviewed evidence did not allow for conclusion to be drawn in regards to the potential benefit of using antidepressants in different diseases compared with other treatment options such as psychotherapy and benzodiazepines [56]. A chart review of 115 hospitalized palliative care patients (mean age of 64 years) with chronic medical conditions, including heart failure, addressed the potential benefit of using benzodiazepines and opioids either in combination or alone in controlling moderate-to-severe dyspnea. Primary diagnoses of chronic medical conditions included: cancer (64%, n ¼ 73), chronic obstructive pulmonary disease (5%, n ¼ 6), and heart failure (8%, n ¼ 9 initial assessment; 73%, n ¼ 84 had moderate; and 27%, n ¼ 31 had severe dyspnea). At follow-up, 74% (n ¼ 85) of the patients reported improvement of their dyspnea, of which 42% (n ¼ 36) had received opioids alone, 37% (n ¼ 31) had BZDs concurrent with opioids, 2% (n ¼ 2) had BZDs alone, and 19% (n ¼ 16) had received neither opioids nor BZDs. Existing evidence showed that most patients with dyspnea receiving opioids and the combination of opioids and BZDs independently improved the dyspnea symptoms. Further research is needed to
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better understand the effect of BZDs alone and in the combination with opioids in the management for this distressing symptom [57 ]. A prospective longitudinal study demonstrated that palliative care in patients suffering from congestive heart failure or chronic obstructive lung disease with emphasis on spiritual well being had a positive impact on quality of life in combination with symptom distress, mental health, and physical functioning [58 ]. Another study evaluated the benefits of integrated palliative advanced homecare and heart failure care in regards to symptom burden and demonstrated an improved quality of life as well as reduced hospitalizations in patients with severe CHF [59 ]. Although evidence from several studies have shown the potential benefits of palliative care in heart failure, it is unknown which patients might benefit most at what stage of the disease. Few specialized research teams tried to identify patients in an earlier phase of their disease process and to deliver structured proactive palliative care [60] while healthcare professionals in cardiology explored the potential benefits of a palliative care approach in heart failure patients [61]. A prospective, doubleblinded, randomized trial was conducted on 308 on patients with acute decompensated heart failure to see the potential benefit of furosemide. The study results showed difference between bolus and continuous infusion; there was no significant difference in patients’ global assessment of symptoms. Patients’ global assessment of symptoms, quantified as the area under the curve (AUC) of the score on a visual-analogue scale over the course of 72 h, and the change in the serum creatinine level from baseline to 72 h (mean AUC, 4236 1440 and 4373 1404, respectively; P ¼ 0.47). Creatinine level [0.05 0.3 mg/dl (4.4 26.5 mmol/l) and 0.07 0.3 mg/dl (6.2 26.5 mmol/l), respectively; P ¼ 0.45]. High-dose group (mean AUC, 4430 1401 vs. 4171 1436; P ¼ 0.06). No significant difference between these groups in the mean change in the creatinine level [0.08 0.3 mg/dl (7.1 26.5 mmol/l) with the high-dose strategy and 0.04 0.3 mg/dl (3.5 26.5 mmol/l) with the low-dose strategy; P ¼ 0.21] was found. The high dose was associated not only with greater diuresis and more favorable outcomes, but also with transient worsening of renal function. The study concluded that there were no significant differences in patients’ global assessment of symptoms or in the change in renal function [62]. Using inotropes therapy as palliation has been done and recommended before such as particular drugs like dobutamine or milrinone to improve hemodynamics and symptoms and to reduce hospitalization. However, another study showed that past evidence on short&
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term and long-term inotrope use had a negative impact on survival in heart failure patients. The study emphasized high-quality evidence on the basis of randomized trials and concluded that inotropic therapy improves quality of life and that it could be indicated in acute decompensations or as a bridge to cardiac transplant. In particular, among patients with heart failure awaiting cardiac transplantation, continuous inotropic therapy is a standard as a bridge to transplantation [63]. A prospective, multicentric study observed 104 patients, aged 75 years and older, who were hospitalized for refractory heart failure, to identify how prognostic factors as well as adequate pain management influence mortality [64], underscoring the benefits of a symptom-oriented treatment approach. Similar results have been shown by other studies that compared the benefits of palliative care in heart failure patients and pancreatic cancer patients. As a result of the enormous symptoms burden and its impact on the patients’ morbidity and their caregiver’s daily lifestyle, more information about the possible implementation of palliative care is required [65]. Good communication and documentation skills have a positive impact on the quality of care, for both palliative and end-of-life care [66,67]. A year-long controlled trial involving 50 intervention patients and 40 control patients in a general medicine outpatient clinic was conducted to assess the knowledge deficit in regards to palliative care. Patients with advanced congestive heart failure, chronic obstructive pulmonary disease, or cancer who had a prognosis ranging from 1 to 5 years were included. The outcomes were assessed at 6 and 12 months. Results showed that the groups were similar at baseline. Similar numbers of patients died (P ¼ 0.63); in the intervention group, patients had less dyspnea (P ¼ 0.01), anxiety (P ¼ 0.05), improved sleep quality (P ¼ 0.05), and spiritual well being (P ¼ 0.007), but no change in pain (P ¼ 0.41), depression (P ¼ 0.28), quality of life (P ¼ 0.43), or satisfaction with care (P ¼ 0.26). Intervention patients had decreased primary care (P ¼ 0.03), urgent care visits, (P ¼ 0.04), and less emergency department visits. The study concluded that palliative care medicine teams had potential influence on symptom management except for pain and depression. Moreover, the findings revealed that there is a potential benefit of palliative care in outpatient settings [68]. A multicenter, cross-sectional, retrospective chart review was conducted to address the importance of palliative care in academic hospitals. Participants included 35 University Health System Consortium academic hospitals in the USA with 1596 patient records, including heart failure patients, reviewed. The study was conducted to Volume 9 Number 1 March 2015
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examine the relationships between the provision of key performance measures (KPMs) and specific outcomes. The study revealed that there are large variations among academic hospitals in compliance with 11 KPMs (0–100%). Increased compliance with KPM showed a significant improvement in quality outcome, expenses, and length of stay (LOS). With the assessment of pain (96.1%) and dyspnea (90.2%), there was a high reduction of these symptoms (73.3% and 77.2%); documentation of prognosis (33.4%); psychosocial assessment (26.2%); communication with family/patient (46%); and a timely planning for discharge (53.4%). Only 12.9% received a palliative care consultation. The study concluded that there is a significant need to deliver palliative care within a hospital setting. The increase in compliance with KPM has a potential benefit in greatly improving the quality outcome, cost reduction, and LOS reduction. The results also revealed that there is a potential benefit of formalizing a palliative care program within a hospital setting to achieve KPM, regardless of formal consultation. It is recommended that hospitals should have a way of delivering and improving access to palliative care [69].
DISCUSSION Conducting this review on palliative care and heart failure has shown that many gaps remain in current scientific literature of how palliative care should be provided to patients with CHF [1,2]. These gaps have resulted in the majority of the scientific community and healthcare providers to equate palliative care with terminal care or interventions performed during the advanced stages of heart failure. As a result, the full potential benefits of palliative care for patients with heart failure and their families have not been achieved. The association of palliative care with terminal care has prevented healthcare providers from discussing or implementing palliative care to heart failure patients in the early stages of their disease trajectory. It is important to widely address the importance of palliative care among people unaware of such care and to offer palliative care interventions at an earlier phase of the chronic disease progress. Palliative care incorporates a holistic set of interventions designed to focus on the quality of life of patients and their caregivers affected by life-limiting illnesses. This care may extend the patients’ survival for months or years after establishing the diagnoses, in particular in heart failure patients undergoing surgery such as cardiac transplantation [18]. Despite the advantages that palliative care offers, less than 10% of hospitalized heart failure patients receive
palliative care services [13]. Referrals to hospital palliative care services are often introduced only at the terminal stage of the disease [20,23]. The involvement of palliative care in the therapeutic approach to heart failure patients can be viewed as part of a more holistic disease management philosophy. It is recommended that palliative care be introduced early in the disease progression to provide more targeted symptom-oriented and quality-of-life-oriented approaches than the standard medical management [19,20]. The misconception of palliative care being associated with end-of-life care must be addressed for palliative care to be effectively provided [19]. Therefore, palliative care should be randomized rather than conceptualized by introducing interventions at various times during the disease trajectory. Currently, palliative care is a service that requires a specific referral. Referrals to the palliative care services were few and introduced during the terminal stage. Review of current scientific literature revealed that most inpatient referrals occurred in the USA and outpatient care in the United Kingdom [20–23]. It is important to understand that incorporating supportive interventions in palliative care creates a more comprehensive treatment and management plan for heart failure patients. These supportive interventions are routinely performed by healthcare providers in addition to the standard medical management. Within these interventions, self-care behavior family counseling should include discussions of the unpredictable nature of the illness, resuscitation preferences, the advance directive, the possibility of exacerbations, and functional decline. An important issue to address is the individual who has the authority and initiative to propose palliative care interventions to heart failure patients, families, and caregivers as well as who receives reimbursement for these services. Review of current scientific literature indicates no written agreement or guidelines for determining such an individual. However, the articles reviewed indicate that palliative care interventions may be proposed and offered by specialized nurses [7], primary care physicians, general practitioners [12], cardiologists [25,38], and those trained in end-of-life care [19]. Based on this review, palliative care should not be dependent on a specific healthcare team, but rather, integrated in the healthcare system and applied in all healthcare settings. Palliative care should not be reserved for heart failure patients who are nearing the end of their life. Instead, palliative care should be recommended to heart failure patients during the transition period from general heart failure disease management to potential terminal care stage. Patients with CHF
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suffer from severe obstinate symptoms, which include: persistent cough, shortness of breath on exertion or lying down, pain, fatigue, difficulty sleeping, anxiety, depression, and poor sleep quality. Palliation should be directed toward each symptom to achieve the best overall outcome. Comprehensive knowledge and extensive understanding of palliative care among service providers will have a significant impact on heart failure patients and their caregivers in dealing with unpredictable challenges and outcomes of CHF. To overcome such issues and help prolong life expectancy, palliative care should be introduced at an early stage of heart failure before the transition from general heart failure disease management to potential terminal care stage. The findings for this review are not based on a prospective randomized clinical trial, but instead, a retrospective and not complete analysis of published scientific articles.
CONCLUSION Upon review of current literature, heart failureoriented palliative care should be integrated as a routine care before transition from general heart failure disease management to potential terminal care stage. With the intention of improving the quality of life of the patient and their families, palliative care integrated as a routine care can prevent and relieve the suffering. Improving overall quality of life of heart failure patients is achieved through early identification with treatment of physical and psychological symptoms. As part of the routine care, palliation of symptoms during the course of refractory heart failure can aim at improving the quality of life of patients and their families. Palliative care integrated as part of the health professional team approach should be globalized within the healthcare system and made applicable in all healthcare settings. This review demonstrates palliative care as most effective in treating and managing heart failure when offered in the early stages of the disease by improving survival rates as well as quality of life. Further research is required to assess the clinical benefits of heart failure-oriented palliative care to improve the quality of life of CHF patients and their families. Acknowledgements None. Financial support and sponsorship None. 12
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Conflicts of interest There are no conflicts of interest.
REFERENCES AND RECOMMENDED READING Papers of particular interest, published within the annual period of review, have been highlighted as: & of special interest && of outstanding interest 1. Goodlin SJ. Palliative care in congestive heart failure. J Am Coll Cardiol 2009; 54:386–396. 2. Jaarsma T, Beattie JM, Ryder M, et al. Advanced heart failure study group of the HFA of the ESC. Eur J Heart Failure 2009; 11:433–443. 3. Hunt SA, Abraham WT, Chin MH, et al. ACC/AHA guideline update for the diagnosis and management of chronic heart failure in the adult a report of the American college of cardiology/American heart association task force on practice guidelines developed in collaboration with the American college of chest physicians and the international society for heart and lung transplantation: endorsed by the heart rhythm society. Circulation 2005; 112:154–235. 4. Lloyd-Jones D, Adams RJ, Brown TM, Carnetho M. Heart disease and stroke statistics. A report from the AHA. Circulation 2010; 121:46–215. 5. Goebel JR, Doering LV, Shugarman LR, et al. Heart failure, the hidden problem of pain. J Pain Symptom Manag 2009; 38:698–707. 6. Gott M, Barnes S, Parker C, et al. Dying trajectories in heart failure. Palliat Med 2007; 21:95–99. 7. Hanratty B, Hibbert D, Mair F, et al. Doctors perceptions of palliative care for heart failure, focus group study. Br Med J 2002; 325:581–585. 8. Field MJ, Cassel CK. Approaching death. Improving care at the end of life. NAP 1997. National Health Program 2011; 92:95. 9. American Heart Association. Heart Disease and Stroke Statistics. 2008 Update At-A-Glance. 10. Briancon S, Guillemin F, Juilliere Y, et al., Epical Investigators. Self-rating of quality of life provides additional prognostic information in heart failure. Insights into the epical study. Eur J Heart Fail 2002; 4:337–343. 11. Hunt SA, Baker DW, Chin MH, et al. American college of cardiology/American heart association ACC/AHA guidelines for the evaluation and management of chronic heart failure in the adult: Executive summary. A report of the American college of cardiology/American heart association task force on practice guidelines (Committee to revise the 1995 guidelines for the evaluation and management of heart failure). J Am Coll Cardiol 2001; 38:2101–2113. 12. Levenson JW, McCarthy EP, Lynn J, et al. The last six months of life for patients with congestive heart failure. J Am Geriatr Soc 2000; 48 (5 Suppl):S101– 109. 13. Pantilat SZ, Steimle AE. Palliative care for patients with heart failure. JAMA 2004; 291:2476–2482. 14. Davidson P, Introna K, Daly J, et al. Cardiorespiratory nurses perceptions of palliative care in nonmalignant disease: data for the development of clinical practice. Am J Crit Care 2003; 12:47–53. 15. Zambroski CH. Hospice as an alternative model of care for older patients with end-stage heart failure. J Cardiovasc Nurs 2004; 19:76–83. 16. Davidson P, Paull G, Rees D, et al. Activities of home-based heart failure nurse specialists. A modified narrative analysis. Am J Crit Care 2005; 14:426– 433. 17. Lunder U, Sauter S, Furst C. Evidence-based palliative care: beliefs and evidence for changing practice. J Palliat Med 2004; 18:265–266. 18. American Academy of Hospice Palliative Medicine; Center to Advance Palliative Care; Hospice and Palliative Nurses Association; Last Acts Partnership; National Hospice and Palliative Care Organization. National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care, Executive Summary. J Palliat Med 2004; 7:611–627. 19. Selman L, Harding R, Beynon T, et al. Improving end-of-life care for patients with chronic heart failure: let’s hope it’ll get better, when I know in my heart of hearts it won’t. Heart 2007; 93:963–967. 20. Cortis JD, Williams A. Palliative and supportive needs of older adults with heart failure. Int Nurs Rev 2007; 54:263–270. 21. McIlfatrick S. Assessing palliative care needs, views of patients, informal carers and healthcare professionals. J Adv Nurs 2006; 57:77–86. 22. Exley C, Field D, Jones L, Stokes T. Palliative care in the community for cancer and end-stage cardiorespiratory disease. The views of patients, lay-carers and healthcare professionals. J Palliat Med 2005; 19:76–83. 23. Rodriquez KL, Barnato AE, Arnold RM. Perceptions of utilization of palliative care services in acute care hospitals. J Palliat Med 2007; 10:99–110. 24. WHO definition of palliative care. www.who.int/cancer/palliative/definition/ en/Dec 2008. www.who.int/cancer/palliative/definition. 2008. 25. Clinical practice guidelines for quality palliative care. www.nationalconsensusproject.org/guideline.pdf. December 2008. 26. Defining palliative care. www.capc.org/building-a-hospital-based-palliativecare-program/case/definingpc.www.capc.org/building-a-hospital-based-palli ative-care-program/case/definingpc. December 2008.
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Palliative care in CHF Muhandiramge et al. 27. Hill RR. Clinical pharmacy services in a home based palliative care program. Am J Healthsyst Pharm 2007; 64:806–810. 28. Statement on access to palliative care and hospice. www.aahpm.org/positions/access.html. 18 December 2008 29. McMurray JJ, Pfeffer MA. Heart failure. Lancet 2005; 365:1877–1889. 30. Dickstein K, Cohen-Solal A, Filippatos G. ESC Guidelines for the diagnosis and treatment of acute and chronic heart failure. The task force for the diagnosis and treatment of acute and chronic heart failure of the European society of cardiology developed in collaboration with the heart failure association of the ESC (HFA) and endorsed by the European society of intensive care medicine (ESICM). Eur Heart J 2008; 29:2388–2442. 31. Hunt SA, Abraham WT, Chin MH, et al. ACC/AHA Guideline update for the diagnosis and management of chronic heart failure in the adult. Circulation 2005; 112:e154–e235. 32. Garg R, Yusuf S. Overview of randomized trials of angiotensin-converting enzyme inhibitors on mortality and morbidity in patients with heart failure. Collaborative Group on ACE Inhibitor Trials. JAMA 1995; 273:1450–1456. 33. Captopril Multicenter Research Group. A placebo-controlled trial of captopril in refractory chronic congestive heart failure. J Am Coll Cardiol 1983; 2:755– 763. 34. Bolger A, Al-Nasser F. Beta-blockers for chronic heart failure: surviving longer but feeling better. Internat J Cardiol 2003; 92:1–8. 35. Pitt B, Zannad F, Remme WJP. The effect of spironolactone on morbidity and mortality in patients with severe heart failure. N Engl J Med 1999; 341:709– 717. 36. Chua TP, Harrington D, Ponikowski P, et al. Effects of dihydrocodeine on chemosensitivity and exercise tolerance in patients with chronic heart failure. J Am Coll Cardiol 1997; 29:147–152. 37. Williams SG, Wright DJ, Marshall P. Safety and potential benefits of low dose diamorphine during exercise in patients with chronic heart failure. Heart 2003; 89:1085–1086. 38. Kaneko Y, Floras JS, Usui K. Cardiovascular effects of continuous positive airway pressure in patients with heart failure and obstructive sleep apnea. N Engl J Med 2003; 348:1233–1241. 39. Sharples LD, Caine N, Mullins P, et al. Risk factor analysis for the major hazards following heart transplantation-rejection, infection, and coronary occlusive disease. Am J Transplant 1991; 52:244–252. 40. Heart disease and stroke statistics update. AHA Retriev. 2012. 41. Goodlin SJ, Wingate S, Pressler SJ, et al. Investigating pain in heart failure patients: rationale and design of the Pain Assessment, Incidence & Nature in Heart Failure (PAIN-HF) study. J Card Fail 2008; 14:276–282. 42. Cardoso G, Trancas B, Luengo A, Reis D. Heart failure and depression: an association with clinical importance. Rev Port Cardiol 2008; 1:91–109. 43. Mahler DA, O’Donnell DE. Dyspnea mechanisms measurement and & management. 3rd ed. CRC Press; 2014; 3. This book shows the clinical importance of palliating symptom in chronic medical conditions. 44. Auble TE, Hsieh M, McCausland JB, Yealy DM. Comparison of four clinical prediction rules for estimating risk in heart failure. Ann Emerg Med 2007; 50:127–135. 45. Juenger J, Schellberg D, Kraemer S, Haunstetter A. Health related quality of life in patients with congestive heart failure: comparison with other chronic diseases and relation to functional variables. Heart 2002; 87:235–241. 46. Shah AB, Udeoji DU, Baraghoush A, et al. An evaluation of the prevalence and && severity of pain and other symptoms in acute decompensated heart failure. J Palliat Med 2013; 16:87–90. This article explores unrecognized and hidden burden of pain in CHF. 47. Udeoji DU, Shah AB, Bharadwaj P, et al. Evaluation of the prevalence and severity of pain in patients with stable chronic heart failure. World Res J Cardiol 2012; 4:250–255; 26. 48. Gomes B, Calanzani N, Curiale V, et al. Effectiveness and cost-effectiveness && of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database Syst Rev )2013; (6); CD007760. This report extends the ethical boundaries of palliative care. 49. Ortı´n GD, Gonza´lez-Sequero V, Come`nech NC, et al. Advance care planning and severe chronic diseases. Rev Esp Geriatr Gerontol 2012; 48:228–231.
50. Lennie TA, Moser DK, Biddle MJ, et al. A nutrition intervention to decrease symptoms in patients with advanced heart failure. Res Nurs Health 2013; 36:120–145. This article reports life style modification as a simple and a basic rule of palliating heart failure symptoms. 51. Higginson IJ, Bausewein C, Reilly CC, et al. An integrated palliative and & respiratory care service for patients with advanced disease and refractory breathlessness: a randomized controlled trial. Lancet 2014; 2:979–987. This article shows that dyspnea is not common to one disease, but may be the most common symptom of CHF. 52. Johnson MJ 1, McDonaugh TA, Harkness A, et al. Morphine for the relief of breathlessness in patients with chronic heart failure – a pilot study. Eur J Heart Fail 2002; 6:753–756. 53. Bausewein C, Booth S, Gysels M, Higginson I. Nonpharmacological interventions for breathlessness in advanced stages of malignant and nonmalignant diseases. Cochrane Database Syst Rev 2008; (2):CD005623. 54. Booth S, Wade R, Johnson M, et al. The use of oxygen in the palliation of breathlessness. A report of the expert working group of the scientific committee of the association of palliative medicine. Respir Med 2004; 98:66–77. 55. Johnson MJ 1, McDonaugh TA, Harkness A, et al. Morphine for the relief of breathlessness in patients with chronic heart failure – a pilot study. Eur J Heart Fail 2002; 6:753–756. 56. Ujeyl M, Mu¨ller-Oerlinghausen B. Antidepressants for treatment of depression in palliative patients: a systematic literature review. Schmerz (Berlin, Germany) 2012; 26:523–536. 57. Gomutbutra P, O’Riordan DL, Pantilat SZ. Management of moderate-to& severe dyspnea in hospitalized patients receiving palliative care. J Pain Symptom Manage 2013; 45:885–891. This report shows that breathlessness is not an uncommon condition. 58. Strada EA, Homel P, Tennstedt S, et al. Spiritual well being in patients with && advanced heart and lung disease. Palliat Support Care 2013; 2013:205– 213. This study explores the myths and facts beyond clinical pharmacology in palliating symptoms of CHF. 59. Bra¨nnstro¨m M, Boman K. A new model for integrated heart failure and && palliative advanced homecare-rationale and design of a prospective randomized study. Eur J Cardiovasc Nurs 2013; 12:269–275. This article shows palliative care and its potential benefit beyond its limitations. 60. Thoonsen B, Groot M, Engels Y, et al. Early identification of and proactive palliative care for patients in general practice, incentive and methods of a randomized controlled trial. BMC Fam Pract 2011; 12:23. 61. Green E, Gardiner C, Gott M, Ingleton C. Exploring the extent of communication surrounding transitions to palliative care in heart failure: the perspectives of healthcare professionals. J Palliat Care 2011; 27:107–116. 62. Felker GM, Lee KL, Bull DA, et al. NHLBI heart failure clinical research network. Diuretic strategies in patients with acute decompensated heart failure. New Engl J Med 2011; 364:797–805. 63. Lo´pez-Candales A, Carron C, Schwartz J. Need for hospice and palliative care services in patients with end-stage heart failure treated with intermittent infusion of inotropes. Clin Cardiol 2004; 27:23–28. 64. Martin-Pfitzenmeye I, Gauthier S, Bailly M, et al. Prognostic factors in stage D heart failure in the very elderly. Gerontol 2009; 55:719–726. 65. Bekelman DB, Rumsfeld JS, Havranek EP, et al. Symptom burden, depression, and spiritual well being: a comparison of heart failure and advanced cancer patients. J Gen Intern Med 2009; 24:592–598. 66. Harding R, Selman L, Beynon T, et al. Meeting the communication and information needs of chronic heart failure patients. J Pain Symptom Manage 2008; 36:149–156. 67. Zapka JG, Hennessy W, Lin Y, et al. An interdisciplinary workshop to improve palliative care: advanced heart failure – clinical guidelines and healing words. Palliat Support Care 2006; 4:37–46. 68. Rabow MW, Dibble SL. Ethnic differences in pain among outpatients with terminal and end-stage chronic illness. Pain Med 2005; 6:235–241. 69. Twaddle ML, Maxwell TL, Cassel JB, et al. Palliative care benchmarks from academic medical centers. J Palliat Med 2007; 10:86–98. &
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Palliative care issues in heart transplant candidates Demian Muhandiramge a,b,c, Dioma U. Udeoji a,b,c, Olivia S. Biswas a,b,c, Parag Bharadwaj a,b,c, Leila Z. Black a,b,c, Karen Angelus Mulholland a,b,c, Concetta Moschella a,b,c, and Ernst R. Schwarz a,b,c
Purpose of review Heart failure is a serious condition and equivalent to malignant disease in terms of symptoms burden and mortality. Presently, only a comparatively small number of heart failure patients receive specialized palliative care. A literature search was conducted with the terms, palliative care and heart failure, using the electronic databases of PubMed and MEDLINE. Recent findings Nine-hundred and five articles were reviewed and of those, 78 articles discussed clinical trials in palliative care and heart failure. A complex set of management tools and strategies were used and recommended, including but not limited to lifestyle modification, exercise programs, pain and sleep disorder management, and support in end-of-life care. Limited data are available of using palliative care in heart transplant candidates prior to transplant surgery. Summary Diminishing quality of life prevails throughout the course of chronic heart failure. Therefore, palliative care should be integrated into heart failure management. Heart transplant candidates may benefit from early palliative care involvement independent of the clinical course and outcome. Because of gaps in current scientific literature on palliative care, end-of-life care, and hospice care and the services rendered, further research is necessary to encourage healthcare professionals to introduce palliative care as an early resource in chronic disease progression. Keywords chronic heart failure, heart transplant, palliative care, quality of life
INTRODUCTION Heart failure is one of the major health problems worldwide especially for patients over the age of 65 years with high morbidity and mortality. In the USA, more than 38 million people suffer from heart diseases with more than 550 000 newly diagnosed cases each year [1,2]. Heart failure accounts for 12–15 million office visits per year and over six million hospital admissions in the USA [3,4,5]. The process is typically characterized by periods of stability interrupted by episodes of acute exacerbation with worsening of symptoms, which require more aggressive treatment or hospitalization [3,4,5]. There is no definitive cure for heart failure, although the therapeutic option for a small subset of selected patients is cardiac transplantation. The illness trajectory (and ultimately, the death trajectory) of heart failure is difficult to predict in individual cases [6]. Despite available modern
evidence-based therapies, heart failure patients often have a poor quality of life. The age-adjusted survival rate for heart failure remains lower than many forms of cancer [7,8]. According to the American Heart Association [9], many of these deaths are unanticipated because the rate of sudden cardiac death is six to nine times higher than that of the general population. Although novel life-prolonging treatments have been developed for heart failure, morbidity and mortality remain high. Thirty to fifty a
DSMI, Beverly Hills, bCedars Sinai Medical Center, Los Angeles, California and cUSA, St Joseph Hospital, Chicago, Illinois, USA Correspondence to Ernst R. Schwarz, MD, PhD, 8631 West Third Street, Ste. 1017 East Tower, Cedars Sinai Medical Center, Los Angeles, CA 90048, USA. Tel: +1 310 289 5901; fax: +1 310 289 5917; e-mail: [email protected]. Curr Opin Support Palliat Care 2015, 9:5–13 DOI:10.1097/SPC.0000000000000112
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Cardiac and circulatory problems
KEY POINTS The purpose of the article is emphasizing the readers to understand: To define the need and the importance of palliative care in advanced HF. The timing and integration of PC service at proper intervals during the disease trajectory. The importance of communication strategies to emphasize the potential befit of PC within appropriate settings. To achieve maximum symptom palliation while transitioning to end-of-life care.
percent of patients diagnosed with heart failure die within the first year [10,11]. The lack of ability to predict the definite terminal phase of the disease and increased symptom burden [12] results in the need for more symptom-directed and outcomedirected management beyond the traditional medical drug therapy [13]. Several studies of heart failure patients have documented unmet needs, such as enhanced symptom management, assistance with performing daily activities, and psychosocial support [14,15]. Although palliative care supports these concerns, healthcare providers and the general public often equalize palliative care with end of life or hospice care and underutilize this type of care in patients undergoing heart transplant evaluation [16,17]. This care may extend the patients’ survival for months or years after establishing the diagnoses, in particular in heart failure patients undergoing surgery such as cardiac transplantation [18]. It is recommended that palliative care be introduced early in the disease progression to provide more targeted symptoms-oriented and quality-of-life-oriented approaches than the standard medical management [19,20]. Review of current scientific literature revealed that most inpatient referrals occurred in the USA and outpatient care in the United Kingdom [21–23].
METHODS A literature review was conducted to determine the benefits of palliative care in treating and managing chronic heart failure (CHF) and heart transplant patients. In the electronic databases of PubMed (MEDLINE), the key phrases searched were ‘palliative care, heart failure, and heart transplant’. Articles that did not present clinical trials were excluded from the review. A subset of clinical trials written in English language was selected for further analysis 6
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to evaluate the role of palliative care in heart failure and heart transplant candidates.
RESULTS A search using the terms ‘palliative care’ and ‘heart failure’ in combination revealed a total of 905 articles. Using the above terms and ‘clinical trials’ produced 78 articles.
Palliative care The World Health Organization (WHO) [24] describes palliative care as an approach that improves the quality of life of patients and their families with problems associated with life-threatening illness. Such strategies for improvement include prevention and relief of suffering by means of early identification and detailed assessment and treatment of pain and other problems in physical, psychosocial, and spiritual areas. The National Consensus Project [25] and the Center to Advance Palliative Care [26] classify palliative care as a philosophy of care that improves the quality of life of patients and their families facing the problems associated with life-threatening illness. Palliative care interventions are provided to patients and families early in the course of a lifelimiting illness in concert with therapies intended to prolong life. Palliative care is limited to advanced disease (i.e., heart failure patients who are refractory to all treatments) and provided by a specialized team of providers. The term ‘palliative care’ may also refer to care that alleviates symptoms, regardless of a cure by other means or the lack thereof. Thus, palliative care may be used to alleviate the side-effects of curative treatments such as relief from nausea associated with chemotherapy [27]. In the USA, a distinction exists between palliative care and hospice care. Both hospice services and palliative care programs share similar goals of providing symptom relief and pain management [28]. Palliative care services can be offered to any patient without restriction. Palliative care is appropriate for patients with a serious illness like CHF, irrespective of the patient’s likelihood to fully recover, live with the chronic illness disability for an extended time period, or experience disease progression. Hospice care under the Medicare Hospice Benefit, however, requires that two physicians certify that the patient has less than 6 months to live if disease progression continues. If a patient is still living after 6 months in hospice, he or she will not be discharged from the service. A major difference between hospice and palliative care is the patient’s prognosis and his or her decisions regarding curative treatment. Volume 9 Number 1 March 2015
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Palliative care in CHF Muhandiramge et al.
Heart failure Heart failure is a disabling and potentially deadly condition [29]. Heart failure occurs when the heart is unable to provide sufficient pump action to maintain blood flow for meeting the needs of the body. Common causes of heart failure include myocardial infarction and other forms of ischemic heart disease, hypertension, valvular heart disease, and cardiomyopathy of several causes. In developed countries, approximately 2% of adults suffer from heart failure. For those over the age of 65, the rate increases to 6–10% [30]. The most common symptoms of heart failure are shortness of breath (either from exertion or at rest), cough, chest pain, fatigue, edema (anasarca in lower extremities if not treated), cardiac arrhythmias, and generalized pain [31]. Several medical therapies used to manage heart failure improve symptoms and quality of life in heart failure patients. Some of these medications such as angiotensin-converting enzyme inhibitors/ angiotensin receptor blocker [32,33], beta blockers [34], and aldosterone antagonists [35] have shown survival benefits. Other treatment options to alleviate heart failure symptoms include diuretics, specifically, loop diuretics, which are used to control the patient’s volume status. Dietary interventions such as fluid restriction and reduction of sodium intake can also help reduce recurrence of decompensation. Oral opioids are rarely used but may improve dyspnea and the ventilatory response to exercise [36,37]. All heart failure patients should be screened for sleep-disordered breathing, the impact of sleep disorder on the right/left ventricular function [38].
Heart transplant candidacy and the role of palliative care Heart failure is a lifelong major clinical problem that compromises the quality of life throughout its progress. Patients with severe heart failure have a 1-year to 2-year mortality rate, approaching 50%, despite of advanced medical treatment. As a result, cardiac transplantation has emerged as an important therapeutic approach for selected patients with end-stage heart disease, offering extended survival and improved quality of life. Initial considerations for heart transplantation include: recipient and donor selection (appropriate candidates, absolute and relative contraindications); transplant urgency status; posttransplant cardiac function; allograft rejection (surveillance through endomyocardial biopsy); immunosuppressant therapy, including short-term and long-term side-effects; and longterm sequelae such as infections, diabetes mellitus, hypertension, renal failure, and malignancies [39].
Even though the prolongation of life and improved symptoms are the two major reasons to consider transplantation, a significant morbidity burden persists. This is because of the long-term need for medical therapy, surveillance, and requirement for frequent follow-up visits and life-long medication use. As a result, palliative care can play an important role in the management of medical problems that need long-term follow-up, including posttransplant physical and psychological issues. The prognosis for heart transplant patients following the orthotopic procedure has increased over the past 20 years. As of 5 June, 2009, the survival rates do not only depend on a successful transplant procedure, but also proper implementation of the palliative care approach to address the issues emerging posttransplantation should be taken into consideration. Survival rates post cardiac transplant are as follows: 1 year, 88.0% (men) and 86.2% (women); 3 years, 79.3% (men) and 77.2% (women); and 5 years, 73.2% (men) and 69.0% (women) [40]. Owing to the particular characteristics of morbidity and mortality in heart failure, the main issues to be addressed by palliative care (among others) in CHF patients are as follows: (1) (2) (3) (4) (5) (6)
Pain Quality of life Depression Breathlessness Physical activity Prognosis.
Pain persists in a majority of patients with CHF. However, the symptoms of pain are not well understood. Although shortness of breath and fatigue are commonly identified symptoms, there are limited data available on pain in heart failure patients [41]. Managing pain is important because symptoms occur with prolonged periods of high cardiac-filling pressure caused by fluid overload. Another important issue associated with heart failure is depression. Presence of depression is associated with a worsening of the prognosis, increased risk of death, rehospitalization, and decrease in functional capacity and quality of life. Early detection and treatment of depression should be appropriately handled by cardiologists and family doctors by including a psychosocial assessment, strengthening the doctor–patient relationship, and if necessary, appropriate antidepressants and psychotherapy [42]. Breathlessness or shortness of breath has been called a ’hallmark’ of heart failure and is probably its most common symptom [42]. It is caused by fluid accumulation and congestion of the lungs, which
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Cardiac and circulatory problems
leads to poor oxygenation. During the early stages of heart failure, patients may experience breathlessness after physical activity, and as heart failure progresses, breathlessness will occur even at rest, causing the patient to have limited daily activities. Chronic heart failure is typically characterized by periods of stability interrupted by episodes of acute exacerbation. These recurrent decompensations and persistent symptoms lead to decrease in functional capacity and quality of life [43 ]. Being physically active has a promising outcome for patients with advanced heart failure. The main four types of activities to be focused on include: managing the illness, keeping up with daily work, biographical work, and arranging work appropriately and in a timely manner. There is a potential benefit applying the four outlined categories in terms of ‘patient work’ for heart failure patients. Heart failure is associated with marked reduction in physical and mental health, resulting in the decrease of the quality of life. Prognosis can be assessed in multiple ways. Such methods include clinical prediction rules and cardiopulmonary exercise testing. Clinical prediction rules use a variety of clinical factors such as lab tests and blood pressure to estimate prognosis. The Enhanced Feedback for Effective Cardiac Treatment rule stratifies patients and identifies those at low risk of death during hospitalization or within 30 days [44]. Another method used is blood urea nitrogen of less than 43 mg/dl and systolic blood pressure 115 mmHg, which has less than a 10% chance of inpatient death or complications. A very important method to assess the prognosis in advanced heart failure patients is the cardiopulmonary exercise testing (CPX testing). The CPX testing is normally done prior to heart transplantation to evaluate prognosis. Recent guidelines by the International Society for Heart and Lung Transplantation include two parameters that can be used in advance heart failure: heart failure survival score and the use of ventilatory efficiency or minute ventilation to carbon dioxide (VE/VCO2) slope of greater than 35 from the CPX test. However, heart failure worsens over time with an annual mortality rate of approximately 10%, causing severe burden to the patients and their families despite existing advanced medical therapies [45]. Pain is common and prevalent in patients with advanced diseases, including heart failure. One cross-sectional study evaluated the prevalence and severity of pain and other symptoms in acute decompensated heart failure among 100 patients. Of the sample size, 67 patients were male with a mean age of 58 17 years who received a standardized questionnaire [Edmonton Symptom Assessment System (ESAS)] within 24 h of their hospital admission. The exclusion criteria were: less &
8
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than 18 years of age, admission for a noncardiac reason, active malignancy, history of chronic pain, outpatient chronic pain medication use, and active palliative care service already in place. The findings resulted in a mean ejection fraction of 37 18%. Sixty patients (60%) reported pain of any degree. Patients with lower ejection fraction (40%, n ¼ 61) reported significantly higher pain scores (4.1 3.6) compared with those with a higher ejection fraction (>40%, n ¼ 36, 2.7 3.4, P < 0.05). The most common symptoms associated with acute decompensated heart failure were tiredness, shortness of breath, and a decline in their well being. The most severe symptoms had mean scores of 6.3 2.8, 6.1 3.1, and 5.7 2.6, respectively. Pain is a common symptom, but is not properly recognized. Thus, there is a potential benefit by integrating palliative care and other nonpharmacological/noninvasive interventions to control pain [46 ]. A cross-sectional study evaluating symptoms of generalized or specific pain in patients with chronic stable heart failure was conducted on 62 patients (mean age of 56 13 years, 51 men, 11 women, mean ejection fraction 33 17%). During a routine outpatient clinic visit, each patient completed a standardized questionnaire (ESAS). Severity of pain and other symptoms were assessed on a 10-point scale with 10 being the worst and 0 representing no symptoms. Thirty-two patients (52%) reported pain with a mean pain score of 2.5 3.1. Patients with an ejection fraction of less than 40% (n ¼ 45, 73%) reported higher pain scores than patients with an ejection fraction greater than 40% (n ¼ 17, 27%), with scores being 3.1 3.3 vs. 1.2 1.9, P < 0.001. The study concluded that pain has a significant effect on the patients’ quality of life [47]. A recent prospective longitudinal multiple case study used qualitative interview techniques in regards to the most recent WHO definition of palliative care [45]. Moreover, the study reveals the influence of palliative care in regards to living as actively as possible. A recent meta-analysis that reviewed 23 studies showed that home palliative care provided to patients suffering from chronic medical conditions, including heart failure, preferred to be cared and dying at home. This finding reveals the importance of palliative care in combination with hospice care in the patients’ home settings [48 ]. Another form of palliative care is called Advanced Care Planning (ACP) in which palliative care is provided to patients who have lost the capacity to provide for informed consent. A Spanish analysis revealed that only 22 out of 135 chronically ill patients (16%) received ACP [49]. Palliative care can also play a role in symptom management including pain, dyspnea, and &&
&&
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Palliative care in CHF Muhandiramge et al.
depression, through nutritional interventions. A double-blinded placebo-controlled study is currently evaluating a 6-month nutritional intervention on symptoms (i.e., edema, shortness of air, and fatigue), health-related quality of life at 3 and 6 months, and time to heart failure rehospitalization or death over 12 months. This ongoing trial randomized 175 patients with advanced heart failure to either the nutritional intervention or the placebo group [50 ]. The Breathlessness Support Service provides palliation for patients with shortness of breath, especially for patients with CHF and chronic lung disease [51 ]. Others evaluated the role of opioid therapy as a means of palliative care to alleviate dyspnea in heart failure patients [52]. A randomized controlled clinical trial assessing the potential benefit of nonpharmacological and noninvasive interventions to relieve breathlessness was conducted. Forty-seven studies were included (2532 participants) and the results were categorized into the following factors: walking aids (n ¼ 7), distractive auditory stimuli (music) (n ¼ 6), chest wall vibration (CWV, n ¼ 5), acupuncture/acupressure (n ¼ 5), relaxation (n ¼ 4), neuroelectrical muscle stimulation (NMES, n ¼ 3), and fan (n ¼ 2). Multicomponent interventions were categorized into counseling and support (n ¼ 5), breathing training (n ¼ 3), counseling and support with breathing-relaxation training (n ¼ 2), case management (n ¼ 2), and psychotherapy (n ¼ 2). The authors concluded that breathing training, walking aids; NMES, and CWV appear to be very effective as nonpharmacological interventions for relieving breathlessness or sedation. In addition, the study concluded that morphine had a potential benefit in reducing breathlessness in patients with CHF, but further research on breathlessness chronic medical conditions including CHF is required because most studies were done on chronic obstructive pulmonary disease patients [53]. A working group of the Association of Palliative Medicine Science Committee conducted a survey to examine the potential benefit of oxygen in palliating breathlessness chronic medical conditions, including advanced heart failure. Results showed that only a few randomized controlled trials were available and that there was no evidence available for heart failure. Recommendations were made on the basis of evidence available such as oxygen needing to be tailored on an individual basis [54]. Despite current maximum medical therapies, CHF patients continue to suffer from severe breathlessness symptoms. To understand the potential benefit of morphine use in palliating breathlessness, a randomized, double-blinded, placebo-controlled, crossover pilot study was conducted on 10 outpatients &
&
with NYHA III/IV heart failure. For 4 days, 5-mg oral morphine was administered four times a day (2.5 mg morphine, if creatinine >200 mmol/l) and the washout between active and placebo arms were 2 days. Results showed that six out of 10 patients had improved their breathlessness using morphine. By day 2 on morphine, median breathlessness score dropped by 23 mm (P ¼ 0.022). Sedation scores increased until day 3 (P ¼ 0.013), and declined on day 4, but while improvement was maintained, four out of 10 patients had developed constipation (P ¼ 0.026). There was no significant difference in the placebo group in regards to breathlessness [55]. Another study assessed 40 clinical trials (six studies, neurological; 24 studies, general medical conditions; and 9 studies with patients at the end of life or in advanced disease stages) to address the importance of palliation of depression using antidepressants (most using selective serotonin re-uptake inhibitors (SSRI) and/or nonserotonin monoamine reuptake inhibitors (NSMRI)) on patients with chronic medical conditions, including patients with heart failure. Owing to variability in study design, no conclusions can be drawn in regards to efficacy or tolerability of whether it is dependent on disease severity. This could be because of the following reasons: studies may have been too small to find treatment effects; lack of efficacy was mostly shown in larger trials; or publication bias. The study concluded that the evidence allows for limited conclusions concerning the use of antidepressants. The reviewed evidence did not allow for conclusion to be drawn in regards to the potential benefit of using antidepressants in different diseases compared with other treatment options such as psychotherapy and benzodiazepines [56]. A chart review of 115 hospitalized palliative care patients (mean age of 64 years) with chronic medical conditions, including heart failure, addressed the potential benefit of using benzodiazepines and opioids either in combination or alone in controlling moderate-to-severe dyspnea. Primary diagnoses of chronic medical conditions included: cancer (64%, n ¼ 73), chronic obstructive pulmonary disease (5%, n ¼ 6), and heart failure (8%, n ¼ 9 initial assessment; 73%, n ¼ 84 had moderate; and 27%, n ¼ 31 had severe dyspnea). At follow-up, 74% (n ¼ 85) of the patients reported improvement of their dyspnea, of which 42% (n ¼ 36) had received opioids alone, 37% (n ¼ 31) had BZDs concurrent with opioids, 2% (n ¼ 2) had BZDs alone, and 19% (n ¼ 16) had received neither opioids nor BZDs. Existing evidence showed that most patients with dyspnea receiving opioids and the combination of opioids and BZDs independently improved the dyspnea symptoms. Further research is needed to
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better understand the effect of BZDs alone and in the combination with opioids in the management for this distressing symptom [57 ]. A prospective longitudinal study demonstrated that palliative care in patients suffering from congestive heart failure or chronic obstructive lung disease with emphasis on spiritual well being had a positive impact on quality of life in combination with symptom distress, mental health, and physical functioning [58 ]. Another study evaluated the benefits of integrated palliative advanced homecare and heart failure care in regards to symptom burden and demonstrated an improved quality of life as well as reduced hospitalizations in patients with severe CHF [59 ]. Although evidence from several studies have shown the potential benefits of palliative care in heart failure, it is unknown which patients might benefit most at what stage of the disease. Few specialized research teams tried to identify patients in an earlier phase of their disease process and to deliver structured proactive palliative care [60] while healthcare professionals in cardiology explored the potential benefits of a palliative care approach in heart failure patients [61]. A prospective, doubleblinded, randomized trial was conducted on 308 on patients with acute decompensated heart failure to see the potential benefit of furosemide. The study results showed difference between bolus and continuous infusion; there was no significant difference in patients’ global assessment of symptoms. Patients’ global assessment of symptoms, quantified as the area under the curve (AUC) of the score on a visual-analogue scale over the course of 72 h, and the change in the serum creatinine level from baseline to 72 h (mean AUC, 4236 1440 and 4373 1404, respectively; P ¼ 0.47). Creatinine level [0.05 0.3 mg/dl (4.4 26.5 mmol/l) and 0.07 0.3 mg/dl (6.2 26.5 mmol/l), respectively; P ¼ 0.45]. High-dose group (mean AUC, 4430 1401 vs. 4171 1436; P ¼ 0.06). No significant difference between these groups in the mean change in the creatinine level [0.08 0.3 mg/dl (7.1 26.5 mmol/l) with the high-dose strategy and 0.04 0.3 mg/dl (3.5 26.5 mmol/l) with the low-dose strategy; P ¼ 0.21] was found. The high dose was associated not only with greater diuresis and more favorable outcomes, but also with transient worsening of renal function. The study concluded that there were no significant differences in patients’ global assessment of symptoms or in the change in renal function [62]. Using inotropes therapy as palliation has been done and recommended before such as particular drugs like dobutamine or milrinone to improve hemodynamics and symptoms and to reduce hospitalization. However, another study showed that past evidence on short&
&&
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term and long-term inotrope use had a negative impact on survival in heart failure patients. The study emphasized high-quality evidence on the basis of randomized trials and concluded that inotropic therapy improves quality of life and that it could be indicated in acute decompensations or as a bridge to cardiac transplant. In particular, among patients with heart failure awaiting cardiac transplantation, continuous inotropic therapy is a standard as a bridge to transplantation [63]. A prospective, multicentric study observed 104 patients, aged 75 years and older, who were hospitalized for refractory heart failure, to identify how prognostic factors as well as adequate pain management influence mortality [64], underscoring the benefits of a symptom-oriented treatment approach. Similar results have been shown by other studies that compared the benefits of palliative care in heart failure patients and pancreatic cancer patients. As a result of the enormous symptoms burden and its impact on the patients’ morbidity and their caregiver’s daily lifestyle, more information about the possible implementation of palliative care is required [65]. Good communication and documentation skills have a positive impact on the quality of care, for both palliative and end-of-life care [66,67]. A year-long controlled trial involving 50 intervention patients and 40 control patients in a general medicine outpatient clinic was conducted to assess the knowledge deficit in regards to palliative care. Patients with advanced congestive heart failure, chronic obstructive pulmonary disease, or cancer who had a prognosis ranging from 1 to 5 years were included. The outcomes were assessed at 6 and 12 months. Results showed that the groups were similar at baseline. Similar numbers of patients died (P ¼ 0.63); in the intervention group, patients had less dyspnea (P ¼ 0.01), anxiety (P ¼ 0.05), improved sleep quality (P ¼ 0.05), and spiritual well being (P ¼ 0.007), but no change in pain (P ¼ 0.41), depression (P ¼ 0.28), quality of life (P ¼ 0.43), or satisfaction with care (P ¼ 0.26). Intervention patients had decreased primary care (P ¼ 0.03), urgent care visits, (P ¼ 0.04), and less emergency department visits. The study concluded that palliative care medicine teams had potential influence on symptom management except for pain and depression. Moreover, the findings revealed that there is a potential benefit of palliative care in outpatient settings [68]. A multicenter, cross-sectional, retrospective chart review was conducted to address the importance of palliative care in academic hospitals. Participants included 35 University Health System Consortium academic hospitals in the USA with 1596 patient records, including heart failure patients, reviewed. The study was conducted to Volume 9 Number 1 March 2015
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Palliative care in CHF Muhandiramge et al.
examine the relationships between the provision of key performance measures (KPMs) and specific outcomes. The study revealed that there are large variations among academic hospitals in compliance with 11 KPMs (0–100%). Increased compliance with KPM showed a significant improvement in quality outcome, expenses, and length of stay (LOS). With the assessment of pain (96.1%) and dyspnea (90.2%), there was a high reduction of these symptoms (73.3% and 77.2%); documentation of prognosis (33.4%); psychosocial assessment (26.2%); communication with family/patient (46%); and a timely planning for discharge (53.4%). Only 12.9% received a palliative care consultation. The study concluded that there is a significant need to deliver palliative care within a hospital setting. The increase in compliance with KPM has a potential benefit in greatly improving the quality outcome, cost reduction, and LOS reduction. The results also revealed that there is a potential benefit of formalizing a palliative care program within a hospital setting to achieve KPM, regardless of formal consultation. It is recommended that hospitals should have a way of delivering and improving access to palliative care [69].
DISCUSSION Conducting this review on palliative care and heart failure has shown that many gaps remain in current scientific literature of how palliative care should be provided to patients with CHF [1,2]. These gaps have resulted in the majority of the scientific community and healthcare providers to equate palliative care with terminal care or interventions performed during the advanced stages of heart failure. As a result, the full potential benefits of palliative care for patients with heart failure and their families have not been achieved. The association of palliative care with terminal care has prevented healthcare providers from discussing or implementing palliative care to heart failure patients in the early stages of their disease trajectory. It is important to widely address the importance of palliative care among people unaware of such care and to offer palliative care interventions at an earlier phase of the chronic disease progress. Palliative care incorporates a holistic set of interventions designed to focus on the quality of life of patients and their caregivers affected by life-limiting illnesses. This care may extend the patients’ survival for months or years after establishing the diagnoses, in particular in heart failure patients undergoing surgery such as cardiac transplantation [18]. Despite the advantages that palliative care offers, less than 10% of hospitalized heart failure patients receive
palliative care services [13]. Referrals to hospital palliative care services are often introduced only at the terminal stage of the disease [20,23]. The involvement of palliative care in the therapeutic approach to heart failure patients can be viewed as part of a more holistic disease management philosophy. It is recommended that palliative care be introduced early in the disease progression to provide more targeted symptom-oriented and quality-of-life-oriented approaches than the standard medical management [19,20]. The misconception of palliative care being associated with end-of-life care must be addressed for palliative care to be effectively provided [19]. Therefore, palliative care should be randomized rather than conceptualized by introducing interventions at various times during the disease trajectory. Currently, palliative care is a service that requires a specific referral. Referrals to the palliative care services were few and introduced during the terminal stage. Review of current scientific literature revealed that most inpatient referrals occurred in the USA and outpatient care in the United Kingdom [20–23]. It is important to understand that incorporating supportive interventions in palliative care creates a more comprehensive treatment and management plan for heart failure patients. These supportive interventions are routinely performed by healthcare providers in addition to the standard medical management. Within these interventions, self-care behavior family counseling should include discussions of the unpredictable nature of the illness, resuscitation preferences, the advance directive, the possibility of exacerbations, and functional decline. An important issue to address is the individual who has the authority and initiative to propose palliative care interventions to heart failure patients, families, and caregivers as well as who receives reimbursement for these services. Review of current scientific literature indicates no written agreement or guidelines for determining such an individual. However, the articles reviewed indicate that palliative care interventions may be proposed and offered by specialized nurses [7], primary care physicians, general practitioners [12], cardiologists [25,38], and those trained in end-of-life care [19]. Based on this review, palliative care should not be dependent on a specific healthcare team, but rather, integrated in the healthcare system and applied in all healthcare settings. Palliative care should not be reserved for heart failure patients who are nearing the end of their life. Instead, palliative care should be recommended to heart failure patients during the transition period from general heart failure disease management to potential terminal care stage. Patients with CHF
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suffer from severe obstinate symptoms, which include: persistent cough, shortness of breath on exertion or lying down, pain, fatigue, difficulty sleeping, anxiety, depression, and poor sleep quality. Palliation should be directed toward each symptom to achieve the best overall outcome. Comprehensive knowledge and extensive understanding of palliative care among service providers will have a significant impact on heart failure patients and their caregivers in dealing with unpredictable challenges and outcomes of CHF. To overcome such issues and help prolong life expectancy, palliative care should be introduced at an early stage of heart failure before the transition from general heart failure disease management to potential terminal care stage. The findings for this review are not based on a prospective randomized clinical trial, but instead, a retrospective and not complete analysis of published scientific articles.
CONCLUSION Upon review of current literature, heart failureoriented palliative care should be integrated as a routine care before transition from general heart failure disease management to potential terminal care stage. With the intention of improving the quality of life of the patient and their families, palliative care integrated as a routine care can prevent and relieve the suffering. Improving overall quality of life of heart failure patients is achieved through early identification with treatment of physical and psychological symptoms. As part of the routine care, palliation of symptoms during the course of refractory heart failure can aim at improving the quality of life of patients and their families. Palliative care integrated as part of the health professional team approach should be globalized within the healthcare system and made applicable in all healthcare settings. This review demonstrates palliative care as most effective in treating and managing heart failure when offered in the early stages of the disease by improving survival rates as well as quality of life. Further research is required to assess the clinical benefits of heart failure-oriented palliative care to improve the quality of life of CHF patients and their families. Acknowledgements None. Financial support and sponsorship None. 12
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Conflicts of interest There are no conflicts of interest.
REFERENCES AND RECOMMENDED READING Papers of particular interest, published within the annual period of review, have been highlighted as: & of special interest && of outstanding interest 1. Goodlin SJ. Palliative care in congestive heart failure. J Am Coll Cardiol 2009; 54:386–396. 2. Jaarsma T, Beattie JM, Ryder M, et al. Advanced heart failure study group of the HFA of the ESC. Eur J Heart Failure 2009; 11:433–443. 3. Hunt SA, Abraham WT, Chin MH, et al. ACC/AHA guideline update for the diagnosis and management of chronic heart failure in the adult a report of the American college of cardiology/American heart association task force on practice guidelines developed in collaboration with the American college of chest physicians and the international society for heart and lung transplantation: endorsed by the heart rhythm society. Circulation 2005; 112:154–235. 4. Lloyd-Jones D, Adams RJ, Brown TM, Carnetho M. Heart disease and stroke statistics. A report from the AHA. Circulation 2010; 121:46–215. 5. Goebel JR, Doering LV, Shugarman LR, et al. Heart failure, the hidden problem of pain. J Pain Symptom Manag 2009; 38:698–707. 6. Gott M, Barnes S, Parker C, et al. Dying trajectories in heart failure. Palliat Med 2007; 21:95–99. 7. Hanratty B, Hibbert D, Mair F, et al. Doctors perceptions of palliative care for heart failure, focus group study. Br Med J 2002; 325:581–585. 8. Field MJ, Cassel CK. Approaching death. Improving care at the end of life. NAP 1997. National Health Program 2011; 92:95. 9. American Heart Association. Heart Disease and Stroke Statistics. 2008 Update At-A-Glance. 10. Briancon S, Guillemin F, Juilliere Y, et al., Epical Investigators. Self-rating of quality of life provides additional prognostic information in heart failure. Insights into the epical study. Eur J Heart Fail 2002; 4:337–343. 11. Hunt SA, Baker DW, Chin MH, et al. American college of cardiology/American heart association ACC/AHA guidelines for the evaluation and management of chronic heart failure in the adult: Executive summary. A report of the American college of cardiology/American heart association task force on practice guidelines (Committee to revise the 1995 guidelines for the evaluation and management of heart failure). J Am Coll Cardiol 2001; 38:2101–2113. 12. Levenson JW, McCarthy EP, Lynn J, et al. The last six months of life for patients with congestive heart failure. J Am Geriatr Soc 2000; 48 (5 Suppl):S101– 109. 13. Pantilat SZ, Steimle AE. Palliative care for patients with heart failure. JAMA 2004; 291:2476–2482. 14. Davidson P, Introna K, Daly J, et al. Cardiorespiratory nurses perceptions of palliative care in nonmalignant disease: data for the development of clinical practice. Am J Crit Care 2003; 12:47–53. 15. Zambroski CH. Hospice as an alternative model of care for older patients with end-stage heart failure. J Cardiovasc Nurs 2004; 19:76–83. 16. Davidson P, Paull G, Rees D, et al. Activities of home-based heart failure nurse specialists. A modified narrative analysis. Am J Crit Care 2005; 14:426– 433. 17. Lunder U, Sauter S, Furst C. Evidence-based palliative care: beliefs and evidence for changing practice. J Palliat Med 2004; 18:265–266. 18. American Academy of Hospice Palliative Medicine; Center to Advance Palliative Care; Hospice and Palliative Nurses Association; Last Acts Partnership; National Hospice and Palliative Care Organization. National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care, Executive Summary. J Palliat Med 2004; 7:611–627. 19. Selman L, Harding R, Beynon T, et al. Improving end-of-life care for patients with chronic heart failure: let’s hope it’ll get better, when I know in my heart of hearts it won’t. Heart 2007; 93:963–967. 20. Cortis JD, Williams A. Palliative and supportive needs of older adults with heart failure. Int Nurs Rev 2007; 54:263–270. 21. McIlfatrick S. Assessing palliative care needs, views of patients, informal carers and healthcare professionals. J Adv Nurs 2006; 57:77–86. 22. Exley C, Field D, Jones L, Stokes T. Palliative care in the community for cancer and end-stage cardiorespiratory disease. The views of patients, lay-carers and healthcare professionals. J Palliat Med 2005; 19:76–83. 23. Rodriquez KL, Barnato AE, Arnold RM. Perceptions of utilization of palliative care services in acute care hospitals. J Palliat Med 2007; 10:99–110. 24. WHO definition of palliative care. www.who.int/cancer/palliative/definition/ en/Dec 2008. www.who.int/cancer/palliative/definition. 2008. 25. Clinical practice guidelines for quality palliative care. www.nationalconsensusproject.org/guideline.pdf. December 2008. 26. Defining palliative care. www.capc.org/building-a-hospital-based-palliativecare-program/case/definingpc.www.capc.org/building-a-hospital-based-palli ative-care-program/case/definingpc. December 2008.
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Palliative care in CHF Muhandiramge et al. 27. Hill RR. Clinical pharmacy services in a home based palliative care program. Am J Healthsyst Pharm 2007; 64:806–810. 28. Statement on access to palliative care and hospice. www.aahpm.org/positions/access.html. 18 December 2008 29. McMurray JJ, Pfeffer MA. Heart failure. Lancet 2005; 365:1877–1889. 30. Dickstein K, Cohen-Solal A, Filippatos G. ESC Guidelines for the diagnosis and treatment of acute and chronic heart failure. The task force for the diagnosis and treatment of acute and chronic heart failure of the European society of cardiology developed in collaboration with the heart failure association of the ESC (HFA) and endorsed by the European society of intensive care medicine (ESICM). Eur Heart J 2008; 29:2388–2442. 31. Hunt SA, Abraham WT, Chin MH, et al. ACC/AHA Guideline update for the diagnosis and management of chronic heart failure in the adult. Circulation 2005; 112:e154–e235. 32. Garg R, Yusuf S. Overview of randomized trials of angiotensin-converting enzyme inhibitors on mortality and morbidity in patients with heart failure. Collaborative Group on ACE Inhibitor Trials. JAMA 1995; 273:1450–1456. 33. Captopril Multicenter Research Group. A placebo-controlled trial of captopril in refractory chronic congestive heart failure. J Am Coll Cardiol 1983; 2:755– 763. 34. Bolger A, Al-Nasser F. Beta-blockers for chronic heart failure: surviving longer but feeling better. Internat J Cardiol 2003; 92:1–8. 35. Pitt B, Zannad F, Remme WJP. The effect of spironolactone on morbidity and mortality in patients with severe heart failure. N Engl J Med 1999; 341:709– 717. 36. Chua TP, Harrington D, Ponikowski P, et al. Effects of dihydrocodeine on chemosensitivity and exercise tolerance in patients with chronic heart failure. J Am Coll Cardiol 1997; 29:147–152. 37. Williams SG, Wright DJ, Marshall P. Safety and potential benefits of low dose diamorphine during exercise in patients with chronic heart failure. Heart 2003; 89:1085–1086. 38. Kaneko Y, Floras JS, Usui K. Cardiovascular effects of continuous positive airway pressure in patients with heart failure and obstructive sleep apnea. N Engl J Med 2003; 348:1233–1241. 39. Sharples LD, Caine N, Mullins P, et al. Risk factor analysis for the major hazards following heart transplantation-rejection, infection, and coronary occlusive disease. Am J Transplant 1991; 52:244–252. 40. Heart disease and stroke statistics update. AHA Retriev. 2012. 41. Goodlin SJ, Wingate S, Pressler SJ, et al. Investigating pain in heart failure patients: rationale and design of the Pain Assessment, Incidence & Nature in Heart Failure (PAIN-HF) study. J Card Fail 2008; 14:276–282. 42. Cardoso G, Trancas B, Luengo A, Reis D. Heart failure and depression: an association with clinical importance. Rev Port Cardiol 2008; 1:91–109. 43. Mahler DA, O’Donnell DE. Dyspnea mechanisms measurement and & management. 3rd ed. CRC Press; 2014; 3. This book shows the clinical importance of palliating symptom in chronic medical conditions. 44. Auble TE, Hsieh M, McCausland JB, Yealy DM. Comparison of four clinical prediction rules for estimating risk in heart failure. Ann Emerg Med 2007; 50:127–135. 45. Juenger J, Schellberg D, Kraemer S, Haunstetter A. Health related quality of life in patients with congestive heart failure: comparison with other chronic diseases and relation to functional variables. Heart 2002; 87:235–241. 46. Shah AB, Udeoji DU, Baraghoush A, et al. An evaluation of the prevalence and && severity of pain and other symptoms in acute decompensated heart failure. J Palliat Med 2013; 16:87–90. This article explores unrecognized and hidden burden of pain in CHF. 47. Udeoji DU, Shah AB, Bharadwaj P, et al. Evaluation of the prevalence and severity of pain in patients with stable chronic heart failure. World Res J Cardiol 2012; 4:250–255; 26. 48. Gomes B, Calanzani N, Curiale V, et al. Effectiveness and cost-effectiveness && of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database Syst Rev )2013; (6); CD007760. This report extends the ethical boundaries of palliative care. 49. Ortı´n GD, Gonza´lez-Sequero V, Come`nech NC, et al. Advance care planning and severe chronic diseases. Rev Esp Geriatr Gerontol 2012; 48:228–231.
50. Lennie TA, Moser DK, Biddle MJ, et al. A nutrition intervention to decrease symptoms in patients with advanced heart failure. Res Nurs Health 2013; 36:120–145. This article reports life style modification as a simple and a basic rule of palliating heart failure symptoms. 51. Higginson IJ, Bausewein C, Reilly CC, et al. An integrated palliative and & respiratory care service for patients with advanced disease and refractory breathlessness: a randomized controlled trial. Lancet 2014; 2:979–987. This article shows that dyspnea is not common to one disease, but may be the most common symptom of CHF. 52. Johnson MJ 1, McDonaugh TA, Harkness A, et al. Morphine for the relief of breathlessness in patients with chronic heart failure – a pilot study. Eur J Heart Fail 2002; 6:753–756. 53. Bausewein C, Booth S, Gysels M, Higginson I. Nonpharmacological interventions for breathlessness in advanced stages of malignant and nonmalignant diseases. Cochrane Database Syst Rev 2008; (2):CD005623. 54. Booth S, Wade R, Johnson M, et al. The use of oxygen in the palliation of breathlessness. A report of the expert working group of the scientific committee of the association of palliative medicine. Respir Med 2004; 98:66–77. 55. Johnson MJ 1, McDonaugh TA, Harkness A, et al. Morphine for the relief of breathlessness in patients with chronic heart failure – a pilot study. Eur J Heart Fail 2002; 6:753–756. 56. Ujeyl M, Mu¨ller-Oerlinghausen B. Antidepressants for treatment of depression in palliative patients: a systematic literature review. Schmerz (Berlin, Germany) 2012; 26:523–536. 57. Gomutbutra P, O’Riordan DL, Pantilat SZ. Management of moderate-to& severe dyspnea in hospitalized patients receiving palliative care. J Pain Symptom Manage 2013; 45:885–891. This report shows that breathlessness is not an uncommon condition. 58. Strada EA, Homel P, Tennstedt S, et al. Spiritual well being in patients with && advanced heart and lung disease. Palliat Support Care 2013; 2013:205– 213. This study explores the myths and facts beyond clinical pharmacology in palliating symptoms of CHF. 59. Bra¨nnstro¨m M, Boman K. A new model for integrated heart failure and && palliative advanced homecare-rationale and design of a prospective randomized study. Eur J Cardiovasc Nurs 2013; 12:269–275. This article shows palliative care and its potential benefit beyond its limitations. 60. Thoonsen B, Groot M, Engels Y, et al. Early identification of and proactive palliative care for patients in general practice, incentive and methods of a randomized controlled trial. BMC Fam Pract 2011; 12:23. 61. Green E, Gardiner C, Gott M, Ingleton C. Exploring the extent of communication surrounding transitions to palliative care in heart failure: the perspectives of healthcare professionals. J Palliat Care 2011; 27:107–116. 62. Felker GM, Lee KL, Bull DA, et al. NHLBI heart failure clinical research network. Diuretic strategies in patients with acute decompensated heart failure. New Engl J Med 2011; 364:797–805. 63. Lo´pez-Candales A, Carron C, Schwartz J. Need for hospice and palliative care services in patients with end-stage heart failure treated with intermittent infusion of inotropes. Clin Cardiol 2004; 27:23–28. 64. Martin-Pfitzenmeye I, Gauthier S, Bailly M, et al. Prognostic factors in stage D heart failure in the very elderly. Gerontol 2009; 55:719–726. 65. Bekelman DB, Rumsfeld JS, Havranek EP, et al. Symptom burden, depression, and spiritual well being: a comparison of heart failure and advanced cancer patients. J Gen Intern Med 2009; 24:592–598. 66. Harding R, Selman L, Beynon T, et al. Meeting the communication and information needs of chronic heart failure patients. J Pain Symptom Manage 2008; 36:149–156. 67. Zapka JG, Hennessy W, Lin Y, et al. An interdisciplinary workshop to improve palliative care: advanced heart failure – clinical guidelines and healing words. Palliat Support Care 2006; 4:37–46. 68. Rabow MW, Dibble SL. Ethnic differences in pain among outpatients with terminal and end-stage chronic illness. Pain Med 2005; 6:235–241. 69. Twaddle ML, Maxwell TL, Cassel JB, et al. Palliative care benchmarks from academic medical centers. J Palliat Med 2007; 10:86–98. &
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