Journal of Cardiovascular Nursing:
Preparing for the Worst While Hoping for the Best: The Relevance of Hope in the Heart Failure Illness Trajectory
Davidson, Patricia M. RN, BA, MEd, PhD; Dracup, Kathleen RN, DNSc; Phillips, Jane RN, BAppSci; Daly, John RN, BA, BHSc, MEd(Hons), PhD; Padilla, Geraldine PhD
Patricia M. Davidson, RN, BA, MEd, PhD Associate Professor of Nursing, School of Nursing, University of Western Sydney, and Sydney West Area Health Service, Sydney, Australia.
Kathleen Dracup, RN, DNSc Dean and Professor, School of Nursing, University of California, San Francisco, Calif.
Jane Phillips, RN, BAppSci Doctoral Candidate, School of Nursing, University of Western Sydney, Sydney, Australia.
John Daly, RN, BA, BHSc, MEd(Hons), PhD Professor of Nursing and Foundation Head, School of Nursing, University of Western Sydney, Sydney NSW, Sydney, Australia.
Geraldine Padilla, PhD Associate Dean for Research, School of Nursing, University of California, San Francisco, Calif.
The authors acknowledge the support of the National Health and Medical Research Grant 219152 for this project.
Corresponding author Patricia M. Davidson, RN, BA, MEd, PhD, School of Nursing, University of Western Sydney, Sydney, Australia (e-mail: firstname.lastname@example.org).
Background: Patients with heart failure have higher mortality rates than those with most malignant diseases. The heart failure illness trajectory is one of gradual decline characterized by unpredictable events such as acute decompensation of heart failure or a sudden cardiac death. Health professionals have an obligation to give patients and their families concise and honest information concerning their prognosis. The challenge exists to give what ostensibly may seem a bleak prognosis within a context of hope and optimism.
Aim: To explore the role of hope in heart disease and the potential utility of this construct in the development of nursing interventions.
Methods: The electronic databases CINAHL, MEDLINE, EmBASE, and PSYCHlit were searched from 1982 to August 2004 using the key words "hope," "hopelessness," "heart disease," and "heart failure." Articles were subsequently sorted to meet the inclusion criteria of (1) a philosophical discussion of the construct of hope and/or (2) investigation of hope in heart disease.
Results: This search retrieved 768 articles, and 24 met the inclusion criteria. Key findings from the review indicate that "hope" and "hopelessness" are underdeveloped, yet important constructs and conceptually linked with depression and spirituality. Intriguing findings from descriptive, observational studies have demonstrated the positive impact of expression of hope on cardiovascular outcomes. These findings need to be validated in randomized controlled trials.
Conclusions: This critical literature review has determined that "hope" is strongly associated with the individual's future orientation. Increased understanding of this concept may assist in refining patient-focused interventions and developing therapeutic strategies to enhance hope.
Heart failure (HF) is primarily a condition of aging and a phenomenon increasing due to success in the treatment of hypertension, acute myocardial infarction, and valvular disorders.1 The prognosis of HF is poor with 5-year mortality rates of 50% and annual hospital readmission rates of 30% to 45%.2,3 Although best practice guidelines recommend frank discussion of prognosis in HF, clinicians still struggle with how to do this, and anecdotally, physicians debate whether we are helping or hindering patients when we frankly discuss issues of prognosis. Significantly, there is evidence that contemporary healthcare systems are failing to meet the needs of patients dying with end-stage HF,4-9 and a recurrent theme in the literature is patient's needs for honest and truthful information.6
Reasons postulated for clinicians not freely giving this information are difficulties in predicting prognosis, the curative paradigm of cardiology, and discomfort of clinicians in dealing with poor prognosis.7 Although clinicians may want to give their patients a realistic view of their illness trajectory, many fear that giving this information may erode hope and the impetus to comply with self-care strategies important in HF management. It is also likely that there are pragmatic reasons for avoiding these discussions, such as shortage of time and lack of experience in these difficult conversations.10-12
Our colleagues in oncology have faced many of these dilemmas and have recognized the importance of fostering hope within patients and therapeutic interactions.13 The concept of hope is regularly discussed in palliative care, yet has received scant attention in the cardiovascular literature. To date, researchers have documented the importance of hope and that it influences how an individual perceives and responds to a threat or life transition.14-18 Actively engaging patients and families in the promotion of realistic hope helps identify what is important to them. This process often aids in goal setting with the benefits of reengagement in relationships and appreciation of aesthetic pleasures.19 It is often through these activities that patients can regain a sense of purpose, meaning, and control over their life in the face of a life-limiting illness.20
We undertook a critical literature review to develop a conceptual framework to assist in delivering the important information regarding prognosis to patients with HF and their families. The electronic databases CINAHL, MEDLINE, EmBASE, and PSYCHlit were searched from 1982 to August 2004 using the key words "hope," "hopelessness," "heart disease," and "heart failure." Articles were subsequently sorted to meet the inclusion criteria of (1) a philosophical discussion of the construct of hope and/or (2) investigation of hope in heart disease. This search strategy retrieved 768 articles, and 24 met the inclusion criteria for this review article.
A Definition of Hope
Hope can be defined as a positive future orientation and is an important coping strategy in critical stages of life.21-23 Nunn and coworkers24 described 3 key aspects associated with a state of hope: temporality, desirability, and expectancy. Since the ancient philosophers, the relationship of hope and optimism with positive outcomes has long been recognized; conversely, an absence of hope is believed to have a negative impact on psychological well-being and physical health.25 It is important to note that the emotion of hope is not necessarily associated with cure but may be associated with a good death, in accordance with the individual's values, beliefs, and cultural attributes.
Conversely, the current debate around assisted suicide is likely engendered by the hopelessness experienced not only by patients but also by physicians.26,27 The challenge of medicine to address physical and psychological suffering compounds this debate.28-30 Many clinicians feel an overdeveloped sense of responsibility for their patients. In vulnerable clinicians, adverse clinical outcomes may equate with a sense of failure.7 These feelings can result in conscious or subconscious disengagement, which the patient experiences as abandonment. Clearly, the relationship between clinician and patient is an important factor in fostering or diminishing hope.
Evidence for the Role of Hope in Cardiovascular Outcomes
Published studies exploring hope in cardiovascular disease are reported in Table 1. Nursing interventions recommended by Roberts and colleagues31 to nurture hope include the provision of concrete objective information, promotion of advocacy, and the encouragement of mutual goal setting. Most published studies are observational and descriptive, with no randomized controlled trials of the assessment of interventions to improve hope. Some studies describe the importance of hope but do not exclusively investigate this construct.32 This clearly represents an important area for systematic nursing enquiry.
The Relationship Between Hope and Depression
Heart failure is largely a condition of the elderly.45 Furthermore, the most common functional psychiatric condition in the elderly is depression. A diagnosis of depression ranges from reactive adjustment to major depression.46,47 The prevalence and incidence of depression and poor quality of life is well documented in HF.48 A key function of hope is to defend against despair by focusing on the future.16 Expectations can be directed toward relief from a difficult situation. To achieve this relief, people must have a sense of control over their environment and feel that they are capable of making decisions that alter their life circumstances. Undeniably, feelings of hopelessness and despair are key characteristics of a depressive illness.49 Intuitively, the development of nursing interventions around building hope may be therapeutic in preventing and managing depression. This strategy may also serve to foster self-care behaviors.
The Link Between Hope and Spirituality
Interest has increased in spirituality as clinicians and scientists grapple with the close interaction between the body and mind. Tanyi defines spirituality as "an inherent component of being human, and is subjective, intangible, and multidimensional."50(p500) Notions of spirituality are often confused with religion, but it is important to note that the 2 are discrete concepts. Spirituality involves an existential dimension or the search for meaning in life.51 A religious belief usually involves an organization with specific beliefs, structures, and practices about a higher power or God.52 Understanding individuals' spiritual orientation is often important in discovering their sources of strength, hope, and future orientation.
In a study comparing outcomes of rehabilitation patients and those with cancer, spirituality demonstrated both a strong association with life satisfaction and quality of life, and it was a significant predictor of life satisfaction among rehabilitation subjects.53 Beery and colleagues examined the role of spirituality in 58 patients with HF. In this study, spirituality scores predicted 24% of the variance in global quality of life.9 Westlake and Dracup interviewed 87 patients with HF using a semistructured questionnaire. In this study, a 3-step process was described where spirituality contributed to attitude toward HF: (1) development of regret regarding past behaviors and lifestyles, (2) search for meaning within the present experience of HF, and (3) search for hope for the future and reclaiming optimism.43 These findings demonstrate the close relationship between hope and the individual's spiritual orientation.
Given the high rates of morbidity and mortality for patients with HF,2,54-56 it is inevitable that nurses will have to confront difficult existential and end-of-life issues. Unfortunately, some clinical environments do not support discussion of end-of-life issues. Inherent difficulties in prognostication and the focus on treatment options such a heart transplantation and implantable cardiac defibrillators make such discussions easy to delay.7 Nurses also may feel that they have inadequate skills and resources to broach end-of-life issues. Despite the fact that the nursing literature is replete with discussions of spirituality,50-53 there is a paucity of data on how to make this important concept operational in nursing interventions. Nonetheless, based on available data in HF patients, it seems that hope and spirituality are closely related.17,57-60
How Do We Best Measure Hope?
Measuring the construct of hope is subject to similar methodological difficulties seen when measuring constructs such as depression and quality of life.61,62 The challenge for clinicians and researchers is to obtain a reliable and valid psychometric measure that is sensitive to changes over time and culturally sensitive. Nunn and colleagues24 have systematically reviewed measures purported to measure hope using both indirect and direct methods. Many of the indirect measures relate to notions such as self-efficacy and locus of control. At the time of this review, the authors are not aware of a validated, disease-specific measure(s) to evaluate hope or hopelessness in patients with HF.
Why Should We Measure Hope in HF?
Patient outcomes in HF are largely predicated on patients' ability to comply with the treatment regimen.63-65 For example, failure to take medications and comply with a low-sodium diet is associated with adverse clinical outcomes. Explanations for failure to adhere to treatment recommendations range from cognitive dysfunction, lack of information, and, in some issues, complex sociodemographic factors.63,66 The ability to identify patients with less hope (ie, vulnerability) and more hope (ie, resilience) is attractive in tailoring interventions and identifying those at highest risk.24 Hope can be conceptualized as a system of goal-directed thinking responsive to feedback and the external environment, underscoring the importance of interpersonal relationships. Other measures and strategies have been developed to look at the ability of people to engage in self-care behaviors.67-69 A measurement developed to quantify hope and future orientation may assist in revealing an important reason why people do not comply with their treatment regimen. The provision of hope through advocacy, information, structure, and empowerment may contribute considerably to the benefits of disease management interventions.
Using Strategies to Increase "Hope" in Nursing Interventions for Patients With HF
Patients with a diagnosis of HF face an unpredictable illness trajectory and clinicians often recount instances where individuals defied the odds.70 Prognosis can be influenced by both pharmacological and nonpharmacological strategies. Undeniably, a variety of factors such as ejection fraction, levels and types of social support, the ability to engage in self-management and adherence to optimal pharmacological and nonpharmacological treatment play a significant role in determining patient outcomes.71,72 Existing and emerging data underscore the influence of social and psychological factors on determining prognosis.73 Evangelista and coworkers60 demonstrated a strong association between hope, mood states, and quality of life in women and identified the fostering of hope as a tool to improve quality of life.
Strategies such as positive self-talk and undertaking tasks that reflect the mantra of preparing for the worst while hoping for the best may be useful for promoting hope in patients with HF. These strategies are supported by use of tailored care plans74 and include formulation of advance care directives,75-77 promotion and support of patient self-care,69,78,79 and having significant others learn cardiopulmonary resuscitation.80 Such strategies influence hope by enhancing patient outcomes and promoting control over the future.
On the basis of this literature review, one can hypothesize that interventions focusing on nurturing hope will promote resilience and control and thereby minimize demoralization, depression, and vulnerability.
Implications for Cardiovascular Nurses
Clearly, there are opportunities in daily clinical interactions and development of interventions for cardiovascular nurses to foster hope. It is important in these interactions that nurses recognize that promotion of realistic hope requires them to
* accept that hope is not dependent on a cure (hope based on better moments),
* ensure that the patients and family have a realistic understanding of their treatment and likely illness trajectory (effective communication), and
* assist the patient and family identify what is important (reorientation) and gain a sense of control over their life.
Clearly, engaging in the promotion of hope is largely dependent on effective communication strategies, and this has implications for the education and training of nurses and their clinical supervision.
Conclusions and Recommendations for Future Research
Nunn and coworkers24 suggest that the investigation of hope is at an early stage in comparison with other constructs of personal experience. We conclude on the basis of our review that to nurture "hope" with patients, clinicians must use an empathetic approach. An empathetic approach is essential in assisting patients explore and process issues such as previous achievements, lost opportunities, regrets, religion, spirituality, and goals. Within the epidemic of chronic disease81,82 and the increasing importance of individual self-care strategies, further investigation of the constructs of hope and hopelessness is important. Increased understanding of these constructs should assist in developing interventions and strategies to assist patients and their families cope with the HF illness experience.
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