EXISTENTIAL FACTORS INFLUENCING END OF LIFE TREATMENT DECISION MAKING: THE ROLE OF DEATH ANXIETY AND MEANING IN LIFE IN CHOOSING TO RECEIVE DESTINATION THERAPY LEFT VENTRICULAR ASSIST DEVICE IN ADVANCED HEART FAILURE PATIENTS b y LACEY RENEE CLEMENT B.A., Stephen F. Austin State University, 2011 M.A., University of Colorado Denver, 2015 A dissertation submitted to the Faculty of the Graduate School of the University of Colorado in partial fulfillment of the requirements for the degree of Doctor of Philosophy Clinical Health Psychology Program 201 8
ii Â© 2018 LACEY RENEE CLEMENT ALL RIGHTS RESERVED
iii This dissertation for the Doctor of Philosophy degree by Lacey Renee Clement h as been approved for the Clinical Health Psychology Program by Kevin S. Masters , Chair Jonathan Shaffer Daniel Matlock Elissa Kolva Date: May 12 , 201 8
iv Clement, Lacey R enee (PhD, Clinical Health Psychology Program) Existential Factors Influencing End of Life Treatment Decision Making: The Role of Death Anxiety and Meaning in Life in Choosing to Receive Destination Therapy Left Ventricular Assist Device in Advanced Heart Fail ure Patients Dissertation directed by Professor Kevin S. Masters ABSTRACT During the course of progressive heart failure , patients must make many decisions regarding medical treatments. O ne aggressive treatment option that can prolong life f or advanced hea rt failure patients is the destination therapy left ventricular assist device (DT LVAD ). Patients are asked to determine which treatments to pursue, like whether or not to receive a DT LVAD, yet little research has examined the factors that influence these decisions. One area of determinants that has been entirely overlooked is existential factors. W hen diagnosed with a life limiting illness, patients' salience of death increases, and they often experience end of life fears. According to Terror Management T heory (TMT), when faced with death, one establishes cultural worldviews that give life meaning and provide an illusion of immortality. This meaning, in a sense, protects one from death anxiety. However, death anxiety and meaning in life have yet to be stud ied in terms of medical decision making. Therefore, t he objective of this study was to examine how death anxiety and meaning in life influence the decision to receive a DT LVAD among patients with advanced heart failure using vignette methodology. The prim ary hypotheses of this study were that ( a ) death anxiety and meaning would be inversely related in that higher meaning would relate to lower death anxiety, and ( b ) both death anxiety and meaning would predict the likelihood of deciding to receive a DT LVA D in
v patients with advanced heart failure. Results from the current study indicate that meaning in life and death anxiety were not significantly related to each other, yet this lack of significance aligns well with TMT, which states that humans essentially suppress death anxiety and do so by focusing instead on what gives their life. These existential factors did not predict the decision to receive a DT LVAD, yet it is likely that basic methodological issues were present, namely the use of hypothetical vign ettes, thus impacting the results. Further research is needed to fully understand how existential factors impact patients and their medical decisions, ideally with longitudinal designs to examine both prospective and actual medical decisions. The form and content of this abstract are approved. I recommend its publication. Approved: Kevin S. Masters
vi DEDICATION I would like to thank my family for their love and endless support throughout my graduate career. Mom, you knew I would be a psychologist long b efore I ever did. Thank you for supporting me and letting me find that path in my own time. You encouraged me to pursue my dreams, and you set an example for me of what following dreams look s like. Mindy, you always believed in my dreams and support ed me wherever those dreams took me. For that, I will never be able to thank you enough. Randy, Addison, and Cooper, I love you all more than you will ever know. Tabitha, thank you for lifting me up whenever I doubted myself a nd reminding me of my strength . Finally , and most importantly, I would like to dedicate this dissertation to the memory of my father. Dad, y ou are the inspiration behind everything I do.
vii ACKNOWLEDGEMENTS This project was funded by a graduate student research grant through the Society of Health Psychology (Division 38 of the American Psychological Association) and by the College of Liberal Arts and Sciences at the University of Colorado Denver. I would like to thank Kevin Masters for being a wonderful mentor and advisor to me t hroughout graduate school. You challenged me to be better , and you helped me grow in every way imaginable. To m y dissertation committee, Jonathan Shaffer , Elissa Kolva , and Dan Matlock , I am in awe of your passion for creating science that will impa ct the lives of patients struggling with chronic and terminal illnesses. Thank you for modeling for me what a researcher can and should strive to be. To my cohort, Jo Vogeli , Kaile Ross , and Tattiana Romo , thank you for being by my side every step of the w ay during graduate school and encouraging me relentlessly. To my wonderful labmates, Kaile Ross , Megan McGugan , and Stephanie Hooker , words truly cannot describe how much of an impact you all had on my career and on my life. I am forever thankful for you three. I specifically owe a debt of gratitude to Stephanie Hooker for being a mentor for me and helping shape my area of research, as well as for being a constant statistical consultant and answering my endless questions. Final ly, t o the countless others who helped me learn and grow throughout my graduate career, th ank you. Without each and every one of you, I would not be where I am today.
viii TABLE OF CONTENTS CHAPTER I. BACKGROUND Shared Decision Making ................................ ................................ ......................... 2 A Vulnerable Population ................................ ................................ ......................... 5 Decisions about Destination Therapy Left Ventricular Assist Devices .................. 6 Quality vs. Quantity of Life ................................ ................................ .................... 9 Death Anxiety ................................ ................................ ................................ ....... 10 Meaning in Life ................................ ................................ ................................ ..... 14 Current Study ................................ ................................ ................................ ........ 16 I I . METHOD Population and Sampling ................................ ................................ ..................... 18 Procedure ................................ ................................ ................................ ............. 19 Vignette Methodology ................................ ................................ ......................... 20 Measures ................................ ................................ ................................ ............... 2 1 Data Analytic Strategies ................................ ................................ ....................... 25 III . RESULTS Descriptive Statistics ................................ ................................ ............................. 2 9 Hypothesis 1 ................................ ................................ ................................ .......... 30 Hypothesis 2 ................................ ................................ ................................ ........... 30 Exploratory Analyses ................................ ................................ ............................ 32 Correlational Analyses ................................ ................................ .............. 32 Regression Analyses ................................ ................................ .................. 33
ix Moderation Analyses ................................ ................................ ................ 35 Mediation Analyses ................................ ................................ ................... 37 I V. DISCUSSION Death Anxiety and Meaning in Life ................................ ................................ ..... 52 Aim 1: Primary Hypothesis ................................ ................................ ...... 52 Aim 1: Exploratory Analyses of Existential Factors ................................ . 54 Aim 1: Next Steps ................................ ................................ ..................... 58 Medical Decision Making ................................ ................................ ..................... 60 Aim 2: Primary Hypothesis ................................ ................................ ...... 60 Aim 2: Methodological Issues ................................ ................................ ... 62 Conc lusions and Future Directions ................................ ................................ ........ 66 REFERENCES ................................ ................................ ................................ ............. 70 APPENDIX A . NYHA Classification ................................ ................................ ................................ 79 B. Demographic Questionnaire ................................ ................................ ..................... 8 0 C. The Death and Dying Distress Scale (DADDS) ................................ ...................... 8 2 D. The Meaning in Life Questionnnaire (MILQ) ................................ ......................... 8 3 E. The Multidimensional Existential Scale (MEMS) ................................ ................... 8 4 F. Hospital Anxiety and Depression Scale (HADS) ................................ ..................... 8 5 G. Minnesota Living with Heart Failure Questionnaire ................................ ............... 87 H. Hypothetical Vignette ................................ ................................ .............................. 88 I. Perceptions of Quality versus Quantity Post DT LVAD ................................ .......... 89
1 CHAPTER I BACKGROUND With advances in medical technology and treatments , patients with chronic, and even progressive and terminal, illnesses are often living longer than would have been expected in even recent times . However, associated with these extended li fe expectancies can be many medical and surgical interventions that can influence quality of life. Consequently, balancing both quantity and quality of life is n ow an important issue for patients. Patients are asked to determine which treatments to pursue, yet little research has examined the patien t factors that influence their determination of these decisions. Understanding patient factors that influence how the y balance quality and quantity of life is important. There are probably many factors influencing th is balance between quality and quantity, and patients may fall anywhere on the spectrum for many reasons , some of which the patient might even be unaware. For instance, t hose who have a greater fear of dying might choose interventions focused on extending their length of life regardless of consequences to quality. Relatedly , if patients feel they have significant meaning in their life, it might strongly inf luence their decision whether or not to opt into potentially dangerous treatments that would extend their life but bring about decreases in quality of life . It is imperative that patient factors be understood when participating in a treatment decision mak ing process , especially with patients who have progressive illnesses for which there is no cure . One such progressive illness is advanced heart failure (HF) , where in very seldom is there simply one decision to be made or treatment modality to be considered . Rather, many alternative interventions exist, each with its own potential
2 risks and benefits to the patient. Because of this , and the nonlinear yet progressive nature of HF, decision making often becomes quite complex and dynamic, with a multitude of fac tors influencing decisio ns on the part of both physician and patient (Burton, Blundell, Jones, Fraser & Elwyn, 2010) . Research into the many potential variables influenc i ng decisions is currently underway. However, the influence of death anxiety and meanin g in life has yet to be examined in a medical decision making context with HF patients. Nevertheless, these are two likely important variables for patients facing limited life expectancies. Because these constructs have yet to be integrated in an empirical study, t he existing literature on shared decision making, death anxiety, and meaning in life will be discussed separately. Shared Decision Making Shared decision making is at the core of treatment and disease management for advanced HF pa tients. It consists of clinicians working closely with patients to fully inform them of risks and benefits associated with different treatments, and it also ensures that patient's values and goals are guiding the medical decision. This collaborative proces s is the result of both patients' expertise about themselves, as well as the clinicians' expertise about the medical conditio n (Allen et al., 2012). Shared decision making has become the cornerstone of patient centered care, and providers have both ethical and legal obligations to involve patients in this process (Allen et al., 2012; Patient Self Determination Act, 1990; Cruzan v. Director , Missouri Department of Health, 1990). Patients must balance their personal goals with the information presented to the m about disease progression and medical therapies. However, various patient factors influence this process, creating a continuum of patient involvement, as well as variability in self
3 awareness about one's own values and goals. Patient factors influencing shared decision making that have been examined thus far include perception about the medical provider, financial burden of disease and treatments, concerns regarding loss of independence, emotional concerns, and cultural issues ( Chang & Sambamoorthi, 2009) . Most of the research in shared decision making has focused on active versus passive roles of the patient. Say et al. (2006) conducted a narrative review examining patient preferences for involvement in medical decisions. They found that patients who are female, younger, and better educated tend to take a more active role in the shared decision making process. Alternatively, men, older patients, those of ethnic minority status, and lower socioeconomic status were more passive and left the burden of decisi on making on the provider. These results were, however, moderated based on type of decision, patient experience with medical care, and relationships with health providers. B ecause so many factors can become part of the decision process and may , at times , b e in conflict, many patients become overwhelmed and tend to take a passive role, often due to disease burden and complexity of the decision. In one study by Ernst and Niederwieser (2011 ), almost 70% of patients with a hematological malignancy reported taking a passive role in their medical decisions, relying on the expertise of the medical provider. Although many patient factors interact, the level of information that a patient understands about the disease, symptom burden, and possible risks and benefits associated with each decision is of significant importance. Often, the term "informed decision making" is used interchangeably with shared decision making, illuminating the need for patien ts to have adequate knowledge of their medical situation. McNutt (2004) stated that "unless there is knowledge of differences (in outcomes) or whether these
4 differences apply to an individual patient, a choice cannot be made" (p. 2517). For example , in a s ample of cardiac patients who were candidates to receive an implantable cardioverter defibrillator (ICD), uncertainty during a decision was often managed , to a great extent , by seeking and receiving information specific to ICD candidacy (Carroll et al., 20 11). Given the importance of appropriate medical knowledge , patients need to be made aware of their health stat us and possible outcomes of treatment options . However, i n a study by Horne and Payne (2004) using semi structured interviews with HF patients, lack of information and ineffective communication with medical providers were among the most common experiences reported by HF patients. Patients discussed how the sever ity of their illness had not been explained to them adequately, and there was a desire to be told "the truth" about their prognosis. Similarly, Gerlich and colleagues (2012), also using qualitative methodology, found that patients lacked appropriate unders tanding of their illness and prognosis and desired better communication with medical team members who could provide information and support simultaneously. Not only do these findings highlight the need for better information, but they also illustrate the i mportance of the relationship between patient and medical team. Trust in medical providers has been repeatedly shown to be one of the most influential factors in shared decision making (Say, Martagh & Thomson, 2006; Wuerth et al., 2002; Ashby et al., 2005) . Using qualitative interviews, Carroll et al (2011) discovered that trust in the physician's knowledge and expertise was a common theme among ICD patients. Along with relationships with the medical team, patients' relationships to family and friends and so cial support strongly influence decision making (Murray et al., 200 9 ;
5 McIlvennan et al., 2014 ). Carroll et al. (2011) also found that social influences played a large role in the decision making process, and the spouses or partners of patients were often the most influential family member that impact ed the medical decision . This could result in different medical decision s depending on the patient and situation ( Chang & Sambamoorthi, 2009 ; Laidsaar et al., 2013 ) . For instance, some patients may choose to receive an aggressive procedure to increase their chances of living longer for their family, whereas other patient s in the same situation could choose to stop treatment to decrease the amount of perceived stress and emotional burden on their loved ones. Clearly, the patient factors that influenc e shared decision making are far more complex than simply being "informed." Palliative care teams often conduct goals of care conversations with these patients to help th em understand what is most important to them and recognize when their goals are no longer being accomplished. These goals require an individual assessment and could range quite significantly depending on the patient. For instance, goals could be longer sur vival, a shorter life expectancy but one spent with family, or a focus on preserving their own dignity ( Chochinov et al. , 200 5 ; Chang & Sambamoorthi, 2009 ; Blevins & Papadatou, 200 9 ). In fact, some patients do not even consider symptom burden or co occurri ng medical conditions when participating in the decision making process (Carroll et al., 2011). A Vulnerable Population HF is a progressive and chronic disease wherein the heart is unable to perform at the necessary level to adequately meet the body's needs. It impacts almost 6 million Americans, with an expected increased prevalence of nearly 40% over the next fifteen years (Allen et al., 2012). For adults over 40 years of age, there is a 20% chance of
6 developing HF. With improvements in both short and long term treatment and technology, individuals diagnosed with HF are living longer. Consequently, patients are symptomatic for longer periods of time, often with advanced HF, which can lead to greater disease and symptom burden and result in many medical treatment decisions. Patients with HF often experience breathing problems, edema, coughing, confusion or impaired thinking, and significant fatigue. As a result, patients with HF can have significant functional impairment and reduced qualit y of life and life satisfaction, and patients with a dvanced HF have moderate to severe symptoms even during rest or with minimal exertion. In HF, it is difficult to predict the severity of symptoms for patients, as well as the timing of the progression of disease. Although prognostic models now exist to better predict survival rates for HF patients, there is still a lack of a comprehensive un derstanding of individual patient variables (McClung, 2013) that predict disease burden. Furthermore, b ecause of the severity and nonlinear course of the disease, frequent medical visits are necessary to ensure that the HF and its associated symptoms are m anaged appropriately. During the course of progressive or advanced HF, many decisions are made regarding medical treatments, ranging from choosing appropriate activity levels, correct dosing of medications, to surgeries. Given the progressive nature of thi s disease, shared decision making between patients and their medical providers is of utmost importance. Decisions about Destination Therapy Left Ventricular Assist Devices ( DT LVADs ) The importance of shared decision making with advanced HF patients is un derscored by the increasing number of therapies and interventions, all with varying
7 levels of intensity, which could impact a patient's well being. One aggressive treatment option for advanced HF patients is the destination therapy left ventricular assist device (DT LVAD), which acts as a mechanical pump for the left ventricle of the heart to help maintain blood flow. Originally, LVADs were used solely as a transition from advanced HF to cardiac transplantation. However, LVADs are now being used for patient s who, for a variety of reasons, are ineligible for transplant. Therefore, this has become known as a form of destination therapy (DT) that will likely sustain or prolong life in patients with advanced HF. Patients considering DT LVADs typically are suff ering from increasing severity of symptoms, have difficulty functioning in daily life, and suffer from comorbidities such as diabetes mellitus (Slaughter et al., 2009). Survival rates, along with quality of life, are generally increased for patients wh o re ceive a DT LVAD. One to two year survival rates of those with DT LVADS range from 58% to 74%, depending on the type of LVAD (Vitale, Chandekar, R odgers, Pagani, & Malani, 2012), whereas those who are eligible but choose not to receive the device have abou t a 10% two year survival rate (Rose et al., 2001). However, many risks also exist for DT LVAD patients, including stroke, additional operations to replace malfunctioning devices, infections, and recurrent hospitalizations. At two years post LVAD placement , 35% of patients had contracted an LVAD related infection, 18% of patients had a stroke, 36% of patients had sepsis, and 94% of patients required rehospitalization (Vitale et al., 2012). Given the already complex process of deciding on any medical treatme nt , the choice to receive a DT LVAD for ad vanced HF patients, a choice that carries with it both intense risks and benefits, c an be quite complex.
8 McIlvennan et al. (2014) explored this complex decision making process for patients who had previously been offered DT LVADs. Using semi structured interviews to examine decision making retrospectively with both patients who had accepted and received a DT LVAD, along with patients who were eligible but chose not to receive it, they found a strong dichotomy in pr ocesses of decision making. P atients approached their decision in one of two ways: (a) an automatic, fear driven approach focused heavily on the fear of dying, or ; (b) a more reflective approach where risks and benefits were weighed systematically. Patient s who engaged in the automatic process discussed how "there was no choice" because deciding not to receive the DT LVAD was in direct conflict with their goal of staying alive. In fact, during the interviews, many of these patients stated that they did not want to hear the information about risks associated with the procedure because their decision was already made and having more information (i.e. "an informed decision") was not desired. On the other hand, patients who were more reflective in their approach weighed the risks and benefits of the procedure, as well as symptom burden and quality versus quantity of their life. In the McIlvennan et al study, t he way patients' thought about their own mortality (i.e. whether or not death was seen as an option) was a key component of their decision, regardless of the approach taken. For patients who used an automatic process, the fear of death was so prevalent that "there was no choice," and they could not fathom opting to decline th e DT LVAD, whereas patients who were more reflective saw death as a possibility and did not seem to fear it to the same extent. These patients weighed the pros and cons associated with both life and death. Existential awareness and distress can i nfluence m ost health decisions but seem especially important with advanced or terminal
9 illnesses . Patients with serious and life limiting illnesses often weigh quality versus quantity of life and integrate their own goals of care into their decisions, especially whe n invasive procedures are involved. Quality v s. Quantity of Life Balancing quality and quantity of life is a dynamic process with constant evaluations from the patient about what takes priority and is deemed most important (Case, Towle, & Fried, 2013). For patients, there are usually competing adverse outcomes with progressive illnesses. For instance, to decrease symptom burden such as dyspnea in HF patients, medications are utilized that often increase mortality risk (Au et al., 2003). There are constant t rade offs that occur for patients to achieve "universal health outcomes" such as prolonging life, decreased symptom burden, and maintaining independenc e (Case et al., 2013). However, these outcomes can be at odds with each other when prolonging life comes at the expense of increased suffering. For patients with a progressive illness and a hi gh symptom burden, suffering is common. Part of that suffering comes from the existential realization that death is an un avoidable part of life, and for many patients, t his realization and awareness becomes more salient due to limited functionality and constant reminders of their failing health. For the average, healthy individual, death tends to be an intellectualized notion in that it is recognized as a reality but is o ften denied or suppressed in everyday life ( Neimeyer, Moser, & Wittkowski, 2003; Becker, 1973; Firestone, 1994) . Very rarely do individuals internalize deat h from an emotional perspective (Neimeyer, Moser, & Wittkowski, 2003). However, with the advent of medical technologies that can sustain life, the process of dying can become a prolonged endeavor. Consequently, p atients with chronic illnesses
10 live longer with decreased health and well being. The increased salience of one's mo rtality can have significant impacts on daily behaviors and overall quality of life. This awareness of existential concerns becomes increasingly relevant in decision making when thoughts of death are common (McIlvennan et al., 2014). Death Anxiety One of the most prolific existential philosophers, Martin Heidegger, once stated that "being towards death is essentially anxiety" (Heidegger, Macquarrie, & Robinson, 1962 , p. 310). Park (2006) discussed the "existential predicament," wherein we are acutel y aware of our death and ultimate loneliness in the world and seek to resolve it in various ways. Similarly, Irvin Yalom, an existential psychotherapist, regarded death as one of the four ultimate concerns of being, along with freedom, isolation, and meani nglessness, and described how humans attempt to control th e concern of death and nonexistence in both adaptive and maladaptive ways (1980). For centuries, philosophers have pondered how death influences being, yet it wasn't until the mid twentieth century when researchers and clinicians began discussing existential anxiety in terms of actual behavior, empirical evidence, and interventions. Templer's Death Anxiety Scale (1970) was one of the first scales of death anxiety to demonstrate empirical evidence fo r its validity. It subsequently generated a great deal of research examining the role of death anxiety on day to day functioning. Since then, the number of death anxiety measures ha s multiplied, each with its own framework of death anxiety, death depressio n, and death avoidance (Beshai & Naboulsi, 2004). Regardless of the operational definition and ontological underpinnings of frameworks of death anxiety, the phenomenon of experiencing overwhelming anxiety when faced with increased
11 mortality salience persis ts. This is especially true of patients with serious and chronic illnesses, whose mortality is often an un avoidable thought. When diagnosed with a life threatening and life limiting illness, patients' salience of death increases, and they often experienc e end of life fears (Stenzel, Vaske, Kuhl, Kenn, & Rief, 2015; Adelbratt & Strang, 2000; Lehto & Stein, 2009). Although this is considered mostly a normal reaction to a diagnosis such as HF or other serious illnesses, it could impair quality of life (Stenz el et al., 2015; Abdel Khalek, 2005; Martz & Livneh, 2003). In fact, in cancer patients, death anxiety has been shown to be related to pain and physical distress (Krause et al., 2015; Grumann & Spiegel, 2003; Gonen et al., 2012), generalized anxiety and de pression (Krause et al., 2015; Lo et al., 2011), and impaired quality of life and decreased spiritual well being (Sherman Normal, & McSherry, 2010; Lo et al., 2011; Tang, Chiou, Lin, Wang & Liand, 2011). Krause et al. (2015), when validating their Death an d Dying Distress Scale for advanced cancer patients, found that patients who were less prepared for end of life and endorsed greater depressive and anxious symptomatology were more likely to experience death anxiety. Similarly, in a study with older chroni c obstructive pulmonary disease (COPD) patients, Stenzel et al. (2015) found that end of life fears were predicted by psychological distress (anxiety and depression) rather than actual physiological functioning. This is especially important to consider wit h HF patients because of the nonlinear progression of HF. Many HF patients will experience an exacerbation followed by a potentially lengthy, relatively stable, period of time . Given this, it is important to consider their psychological functioning as an i ndependent, yet related factor.
12 According to the existential philosophers, awareness of death is an unavoidable aspect of living, and human s are plagued with anxiety related to death and ultimate nonexistence or loneliness. However, contrary to these theo ries, some research illustrates that thoughts of death may not be this prevalent , therefore minimizing the amount of death anxiety experienced . According to findings by Willems, Hak, Visser, and Van der Wal (2004), it is possible that individuals do not th ink about death very often. In their study examining thoughts of death in patients with advanced HF, many patients reported not thinking about death at all or only during HF exacerbations. This finding seems antithetical to many philosophical perspectives and empirical stud ies concerning the universality of anxiety related to death . Yet, one theory seeks to explain this discrepancy. Terror Management Theory (TMT), perhaps one of the most well known, well regarded, and well studied theories about mortality cognitions, posits that humans are acutely aware of death but seek to protect themselves from th e accompanying anxiety by having cultural worldviews that give life meaning and provide an illusion of immortality (Greenberg, Pyszczynski, & Solomon, 1986). In essence, TMT describes how humans have a biological drive to survive, yet this drive is juxtaposed with the inevitability of death, which creates a sense of terror, or as Becker described it, an "annihilation anxiety" (1973). To manage this, individuals r ely on cultural worldviews and bolstered self esteem. Individuals find an identity and sense of meaning in symbolic immortality. There have been a plethora of TMT studies examining increased mortality salience's effect on cultural worldviews. In these stud ies, researchers often create situations where in mortality is more prominent such as having individuals write their own obituary, think abstractly about their death, or be in close proximity to a funeral home. When the
13 salience of one's mortality is increa sed, individuals tend to cling more closely to their worldviews, whether they centered on nationality or religion (Castano, Yzerbyt, Paladino, & Sacchi, 2002). According to TMT, this awareness of death is unconscious but constantly driving behavior. This m ight provide a possible explanation for why HF patients in the study by Willems et al. (2004) described not thinking about death often. Though patients may be unaware of th eir thoughts about death and the accompanying anxiety, it may still influence their behavior and perception of the world, especially as their m ortality salience is increased. A central tenet of TMT is the need for the existence of cultural worldviews and frameworks for life. A similar existential theory, the meaning maintenance model (MMM), posits that people have an inherent need to find meaning in the world and perceive event s through a paradigm of mental representations that organizes their perceptions of the world in a coherent framework (Heine, Proulx, & Vohs, 2006). The MMM was based on writings by existential philosophers like Heidegger, Kierkegaard, and Camus and seeks t o expound on the "human conditionÃ‰of a never end in g pursuit of meaning" (Heine et al., 2006, p. 89). It illustrates the need of humans t o find meaning in relationships, with both the external and internal world, and the nature of humans to be meaning maker s. When events occur that do not fit within the existing framework, accommodation occurs to create a cohesive meaning system that integrates all events. Throughout history , meaning has clearly been an integral component to understanding human nature, and t his is especially true for understanding the behavior of individuals with chronic, progressive, and life limiting illnesses.
14 Meaning in Life French existential philosopher Albert Camus once stated that "judging whether life is or is not worth living amo unts to answering the fundamental question of philosophyÃ‰I therefore conclude that the meaning of life is the most urgent of questions" (Camus, 1955, p. 3 4). Victor Frankl, founder of logotherapy, discussed the importance of finding meaning in human life, especially reconnecting with the sources of meaning in the midst of s uffering (1955, 1959, 1969 ). In Will to Meaning , Frankl noted that "if there is meaning, it is unconditional meaning, and neither suffering nor dying can detract from it" (1969, p. 156). There is a universal need to attribute meaning to life when faced with the possibility of death (Blevins & Papadatou, 2006). Meaning in life can be generally thought of as the extent that individual s feel that their existence is significant and the activi ties in which they engage regularly are of value (Reker, Peacock, & Wong, 1987) . Although there is no one agreed upon definition of meaning, it is well accepted that individuals must discover their own meaning in life (Battista & Almond, 1973). Because of this, m e aning can be found and created i n many different ways. Westlake and Dracup (2001) found that HF patients often found meaning in their families and loved ones, helping others, working, religion or faith, and hobbies. Additionally, patients with a w ide variety of diagnoses, including cardiac illness, cancer, and HIV, reported that their spirituality strongly influenced their daily lives (Woods & Ironson, 1999), and patients who are facing end of life issues report spirituality and life meaning becomi ng more salient (Sulmasy, 2002; Pulchaski, Dorff, & Hendi, 2004), including patients with end stage HF (Oates, 2004). Cancer patients who reported greater meaning in life also reported higher life satisfaction, greater quality of life, and an
15 increased tol erance of physical symptoms (Brady , Peterman, Fitchett, Mo, & Cella , 1999). Meaning, along with other factors such as purpose in life and faith, are often considered components of spiritual well being, a broad and not yet fully understood term that describes "an individual's quality of life in the spiritual dimension" (Ba i & Dixon, 2014, p. 404). Spiritual well being is becoming increasingly recognized as an important factor of overall well being ( Hodge, 2006 ), and research has demonstrated that greater spiritual well being is associated with better physical and mental hea lth outcomes (Powell, Shahabi, & Thoresen, 2003; Visser, Garssen, & Vingerhoets, 2010; Bonelli & Koenig, 2013). S piritual well being, namely meaning, acted as a buffer against depression, hopelessness, and a desire for hastened death among patients with te rminal cancer (Breitbart et al ., 2000; Nelson, Rosenfeld, Brei tbart , and Galietta, 2002), even after controlling for depres sion (McClain, Rosenfeld, & Breit bart, 2003). In a group of HF patients, purpose in life moderated the relationship betw een depressio n and symptom burden, resulting in less symptom burden for those with greater meaning in life (Gusick, 2008). Therefore, factors such as meaning in life and faith could be indicator s of overall spiritual well being. Spirituality can influence decision m aking in a variety of ways. McIlvennan et al. (2014) found that spirituality was a common domain that influenced the decision to accept or decline a DT LVAD. For some individuals, relying on faith influenced their decision to accept a DT LVAD, whereas othe rs' spirituality led them to decline the DT LVAD, as illustrated by one patient's response that he/she was able to "accept my mortalityÃ‰it's made me more spiritual." Patients who grew spiritually as a result of their illness were more likely to accept the risk associated with a high burden life sustaining
16 treatment (Van H ess, Towle, O'Leary, & Fried, 2008). Patients who experience enhanced spiritual well being may also be more likely to accept the uncertainty of death (Park, 2008). Steger, Frazier, Oishi, and Kaler (2006) created a measure of meaning in life (Meaning in Life Questionnaire) that not only examines the presence of meaning in life , but also examines the search for meaning, an important aspect of the meaning process given the fundamental human drive to find and create meaning in life , especially in the face of uncertainty and death . Interestingly, although presence of meaning in life has well documented positive relationships with well being , the construct of searching for meaning has been shown to be related to negative affect, depression, and neuroticism (Steger et al., 2006). This echoes both Frankl (1965) and Maddi (1970) who suggested that searching for meaning is a frustrating and distressing endeavor. Clearly, relationships among aspects o f meaning in life and psychological factors exist , and the status of life meaning can indicate either greater or poorer well being . However, it is unclear how existential c onstructs, namely searching for meaning, interact with uncertainty and anxiety relat ed to death and subsequently impact well being. Furthermore, searching for meaning has yet to be examined alongside other existential factors within the context of medical populations who face increased mortality salience. It would seem likely that these d ifferent components of meaning lead to different processes in decision making, especially when integrating death anxiety. Current Study Though death anxiety, meaning in life, and factors associated with shared decision making in HF patients have been studied independently , the lack of studies
17 testing the relationship between these factors is a glaring omission in the literature. Even TMT, the most well known theory concerning death threat and meaning has yet to be test ed in actual patient pop ulations, whose mortality is obviously s alient. Clinically, these existential factors are present and impact HF patients on a daily basis . Understanding the influence of death anxiety and meaning could enhance discussions with patients, as well as provide opportunities for psychologists or other health care providers to develop interventions aimed at addressing these conc erns. Therefore, t he overall objective of this study was to examine how de ath anxiety and meaning in life influence the decision to receive a DT LVAD among patients with advanced HF. The primary hypotheses of this study were that ( a ) death anxiety and meaning would be inversely related in that higher meaning would relate to lower death anxiety and ( b ) both dea th anxiety and meaning would significantly and independently predict likelihood of deciding to receive a DT LVAD in patients with advanced HF. To test these hypotheses, the following specific aims were : Aim 1 : Examine the relationship between death anxiet y and sense of life meaning in patients with advanced HF . Aim 2 : Examine, using clinical vignettes with a sample of advanced HF patients, whether death anxiety and sense of life meaning provide unique contributions to the decision to receive a DT LVAD, controlling for depression, anxiety, health related quality of life, life satisfaction, and disease severity .
18 CHAPTER I I METHOD Population and Sampling Participants were deemed eligible for the study if the following inclusion criteria were met: 1) existing diagnosis of advanced HF (NYHA Functional C lass II, III, or IV . See Table 1 ), 2) at least 40 years of age, 3) able to read and understan d English, and 4) access to a valid email account. Additionally, participants w ere excluded i f they we re una b le to provide informed consent and/or have previously received an LVAD or heart transplant . The eligibility criteria were chosen to obtain a wide sample of adults with HF. Patients with advanced HF are defined as those with "end stage" HF , New York Heart Association (NYHA) functional class II, III , or IV, and/or left ventricular ejection fraction < 30 % (Metra et al. 2007 ) . For the current study, NYHA functional classification was used by assessing symptoms related to physical limitations. Also, adults with advanced HF tend to be older adults , hence the age criterion of 40 years or older. Additionally, the rationale for in cluding adults age 40 and older wa s that meaning often becomes more salient for adults who enter middle and older age (Steger, Oishi, & Kashdan, 2009). Therefore, middle to older age is a particularly important time to understand the existential processes that predict treatment decision making. The rationale for enrolling adults who read and understand English is that the majority of the measures have only been validated in English. Additionally, those who already received an LVAD, either as b ridge to trans plantation or as destination therapy, w ere excluded to ensure that only those who ha d yet to make this medical decision w ere sampled. Similarly, to
19 understand factors th at influence th e decision making process for those who have yet to receive surgical the rapies for advanced HF , participants who have had a heart transplant were excluded . Participants were recruited online via Qualtrics Labs, Inc. Qualtrics Panels ha s access to nationally representative samples with a variety of self identifying factors , one of which is HF . The average demographic discrepancy between online recruitment platforms like Qualtrics and the U.S. population is roughly 5 10% (Heen, Lieberman, & Miethe, 2014) , and in particular, Qualtrics i s closest to matching the U.S. populatio n in ages 60 and older , when compared to other online sampling platforms such as Survey Monkey and Mechanical Turk ( Heen et al., 2014), a common concern when sampling via online strategies. This wa s especially important for this particular study whe re most participants w ere likely older adults. Qualtrics participants receive d points for each survey completed, which translate d into approximately $4.00 per survey. Additionally, several validity questions were randomly inserted into the survey to ensure that p articipants were reading and answering questions thoughtfully. Procedure This study was conducted entirely online through Qualtrics Panels. Qualtrics sent emails with an active link to the survey to participants who had endorsed an existing diagnosis of HF . T hose individuals who opted to participate in the survey were directed to the survey and first shown the consent form. After reading the consent form, participants had to endorse they understood and agreed to participate in the study. For those who con sented, the first questions of the survey asked about symptoms related to HF . These questions were designed to determine the NYHA functional classification of
20 each p erson by assessing the extent of limitations of physical activity. Only those who met crite ria for NYHA II, III, and IV were included. If pa rticipants selected answers that were indicative of NYHA class I they received a message stating they were ineligible for the study and could not complete the survey , and they were not allowed to continue. S ee Appendix A for NYHA classification questions. Additionally, each person was asked whether or not he/she had previously received an LVAD or heart transplant. If a participant endorsed receiving either of these therapies, that participant was deemed ineli gible and was not allowed to continue the survey. T hose individuals who met inclusion criteria for the study complete d demographic questions , along with qu estions assessing death anxiety , meaning in life, depression, anxiety, and quality of life (See Appendices B through G). After answering these questionnaires, each partici pant was presented with a hypothetical vignette , illustrating both risks and benefits of receiving a DT LVAD for advanced HF patients ( See Appendix H ) . Afte r reading and reflecting on the vignette , participants answered a question about the likelihood of opting to receive the DT LVAD. Following this, participant s were asked questions regarding their perceptions and understand ing of the DT LVAD risks and benef its as both a manipulation check and potential moderating variable. Vignette Methodology Hypothetical vignette methodology was implemented to evaluate the decision makin g process in a relevant sample of actual HF patients but to do so in a less threatening or personal manner . The se p articipants face d the possibility of eventually being required to make a similar medical decision yet we re not currently in the decision
21 making process . Additionally, ethical issues that could arise b y asking patients in the midst of this medical decision were averted. The vignette used in this study was initially modeled after the vignette used in Magid et al. (2015), a similar study investigating deci sion making for HF patients. The vignette was fir st piloted with five HF patients to ensure it was phrased in a way that could be easily understood by lay person s and did not bias responses in a particular way . Feedback from this piloting session illustrated that the vignette was too vague and did not ex plicitly state the possible risks and benefits clearly enough. After revisions, the vignette was piloted a second time to another group of HF patients. This version included explicit risks due to surgery and LVAD placement, as well as percentages of the ch ance of risks. The final vignette was then created after feedback from the second piloting session. See Appendix H for final version of vignette that was used in this study. Measures NYHA functional c lassification. Two questions regarding symptoms related to HF were asked to determine NYHA functional classification. First, participants were asked whether or not they experience symptoms when resting. Then, each person was asked the amount of activity that causes sympt oms such as shortness of breath, fatigue, or heart palpitations. Responses were aligned with NYHA classification to determine appropriate class. Those that responded with "ordinary physical activity" were classified as NYHA class II. Responses of "less tha n ordinary physical activity" were classified as NYHA class III, and responses of "any type of physical activity" were classified as NYHA class IV. See Appendix A. Demographics . Questions regarding a ge, ethnicity, marital status, education,
22 income, religi ous denomination, and religiosity and spirituality were asked. See Appendix B. Predic t or v ariables . Death Anxiety . Death anxiety was measured using the 15 item Death and Dying Distress Scale (DADDS ; Krause , Rydall, Hales, Rodin, & Lo, 2015) . Participants rated their distress about a number of different thoughts related to their death on a 6 point Likert type scale from 0 = "I was not distressed about this thought or concern" to 5 = "I experienced extreme distress." Scores range from 0 75, wi th greater scores indicating greater death anxiety. Sco res less than 15 indicate "none to little", 15 29 indicate "little to moderate", 30 44 indicate "mild to moderate", 45 59 indicate "moderate to great", and scores 60 to 75 indicate "great to extreme" d eath anxiety. This version of the scale has a one factor structure and strong internal reliability ( ! = .95) . It also has good construct validity with significant and appropriate in magnitude correlations with related constructs, such as preparation for de ath ( r = .68, p < .0001), generalized anxiety ( r = .63, p < .0001), and depressive symptoms ( r = .50, p < .0001). This scale was developed for , and has been used with , patients with advanced cancer to capture death anxiety related to advanced physical ill nesses. See Appendix C. Meaning in Life . The Meaning in Life Questionnaire (MILQ) is a 10 item measure that assesses the extent to which a person perceives his or her life as meaningful and searches for meaning in life (Steger, Frazier, Oishi, & Kaler, 2006) . The MILQ has two subscales: Presence of Meaning (e.g., "My life has a clear sense of purpose") and Search for Meaning (e.g., "I am always looking to find my life's purpose"). Total s cores of 24 , on each subscale , are typically used clinically to dis criminate higher from lower
23 meaning (Steger et al., 2006). In the validation study, group means for Presence and Search subscales were 24.0 ( SD = 5.6) and 22.5 ( SD = 6.2), respectively. Scores did not differ across gender or race. The correlations bet ween the MILQ Presence subscale and the Purpose in Life Test and Life Regard Test, two additional measures of meaning in life, ranged from .58 to .74, indicating convergent validity. Because other meaning measures do not include search for meaning, evidence of convergent and discriminant validity for the MILQ Search subscale was limited. There was a significant correlation (.35) between two time points for the MILQ Search in an initial validation study, indicating evidence of convergent validity. This measure ha s been shown to be internally consistent ( ! = .82 for Presence and ! = .87 for Search). The MILQ has been used across gender, age, racial, and national groups. See Appendix D. The Multidimensional Existential Meaning Scale (MEMS; George & Park, 2016) is a 15 item measure that examines the concept of meaning from a multidimensional perspective. The MEMS has three factors of meaning: Comprehension, Purpose, and Mattering. It has been shown to have good internal consistency (mean ! = .90 for Comprehension, ! = .8 9 for Purpose, and ! = .8 6 for Mattering ) across three samples of undergraduate students . The MEMS is an exploratory measure and will be used in an attempt to further specify the meaning construct. See Appendix E. Covariate s . Depres sion and Anxiety . Depressive and anxious symptoms were assessed using the 14 item Hospital Anxiety and Depression Scale ( HADS ) ( Zigmond & Snaith, 1983 ) . The scale poses statements related to depression and anxiety, and respondents choose the most appropriate answer from four responses. For instance, the statement "I still enjoy
24 the things I used to" includes the following response options: "definitely as m uch," "not quite as much," "only a little," and "hardly at all." The HADS has been used in medical center settings and has evidence to support its use as a screen for depression and anxiety to better understand presence and severity of sym p toms. Scores for each subscale range from 1 21. Scores 8 10 indicate borderline or possible depression/anxiety, and scores 11 or greater indicate clinically significant depression/anxiety. See Appendix F. Health Related Quality of Life. Participants rated their quality o f life using the Minnesota Living with Heart Failure Questionnaire (MLHFQ ; Rector & Cohn, 1992) . The MLHFQ is a 21 item measure with a 6 point response scale from 0 to 5. Participants rate the extent to which physical and emotional symptoms of HF have prevented them from living as desired in the past month. A total score is possible, as are two subscales (physical and emotional) , with greater scores indicating lower quality of life . This measure has been shown to be internally consistent ( ! > .80) . A benefit of the MLHFQ is that it assesses both functional quality of life, as well as the emotional life satisfaction of a participant. See Appendix G. Manipulation c heck/ m oderat ing v ariable . Perceptions of Quality versus Quantity Post DT LVAD . To be tter under stand how participants perceived the trade offs between quality and quantity of life as presented in the vignette, two questions were asked: " After reading the scenario above, please rate how much you thought your quali ty of life would be impacte d by receiving a DT LVAD " and " After reading the scenario above, please rate how much you thought your quantity of life would be impacted by receiving a DT LVAD", each with a 10 point Likert type visual analog scale. See Appendix I .
25 Outcome variable. Likelihood of Decision. A 4 point Likert type scale was used to assess the level of certainty of receivi ng DT LVAD, from 1 = Extremely Unlikely to 4 = Extremely Likely, by asking " H ow likely would you be to get the surgery if this were you?" Though most st udies in this area are qualitative, this study set out to understand decision making using a quantitative methodology. Additionally, rather than using a dichotomous (yes/no) outcome, having an outco me with more variability was designed to allow for more precise analysis of the effects of death anxiety and meaning in life. This question and Likert type response scale was previously use d by Magid et al. (2015) in a similar study investigating decision making for HF patients. Data Analytic Strategies U sing GPower 3.1 (Faul , 2007) , sample size was determined using an alpha of .05, a desired power of .80, and an anticipated small to medium effect size ( f 2 = .15). Using these parameters, it was determined that a sample size of N = 68 wa s needed. Data were analyzed using IBM SPSS Statisti cs version 24 (SPSS Inc., 2016). Descriptive statistics (e.g. mean, standard deviations, frequency distributions) were calculated to describe the sample. Continuous variables were checked for normality. Scale scores were calculated according to the author's instructions. Bivariate associa tions among study variables were examined. Hypothesis 1 : Death anxiety and meaning will be inversely related in that higher meaning will relate to lower death anxiety. Pearson correlations assess ed the relationship among death anxiety and meaning in life. The p resence of m eaning subscale of the MILQ was the primary measure of meaning in life, although the s earch for
26 m eaning was also examined in an exploratory manner. Hypothesis 2 : B oth death anxiety and meaning in life w ill significantly and independently predict likelihood of deciding to receive a DT LVAD in patients with advanced HF , after controlling for NYHA classification, demographics, anxiety, depressio n, and quality of life. Based on results from the Pearson c orrelations, stepwise linear regressio n analyse s were used to determine the unique contributions of de ath anxiety and meaning in life to the outcome of the likelihood of receiving a DT LVAD. Demographics such as gender, age, and income w ere entered into the model first as covariates, followed b y disease severity (NYHA classification). In the third step, depression , anxiety, and health related quality of life were entered into the model as additional covariates. Disease severity was entered separately from the more psychologically influenced cons tructs to determine the uni que contributions of depression, anxiety, and health related quality of life to the li kelihood of receiving a DT LVAD . Finally, death anxiety and meaning w ere entered into the model s to assess whether one or both predict the out come. Exploratory Analyses : To fully accomplish the first aim of this study in examining general relationships between death anxiety and meaning in life in participants with advanced HF , additional correlational , regression, moderation , and mediation analyses were used to better understand relationships among existential and psychological factors. Moderation analyses were used to determine how meaning could impact the relationship between other existential and psychological variables. Variables entere d into the moderation models were first centered around their means. If significant moderation effects were present, sim ple slopes were created at low and high levels of the moderator
27 by adding and subtracting the standard deviation of the moderating varia ble. Furthermore, mediational analyses were used to determine direct and indirect effects of meaning in life on existential and psychological variables. A four step approach was used ( Baron and Kenny, 1986) wherein the first three steps establish that statistically significant relationship s exist between the variables to be included in the mediation analysis by testing the direct effects between the variables. In step four , a partial mediation is supported if, when controlling for the med iator, the relationship between the predictor and outcome is still significant but reduced in magnitude . A full mediation is supported if the relationship between the predictor and outcome are no longer significant when controlling for the mediator (Hayes, 2013) .
28 Table 1 NYHA Functional Classification NYHA Class Patient Symptoms I No limitation in physical activity. Ordinary physical activity does not cause undue fatigue, palpitation, dyspnea. II Slight limitation of physical activity. Comfortable at rest. Ordinary physical activity results in fatigue, palpitation, dyspnea. III Marked limitation of physical activity. Comfortable at rest. Less than ordinary activity causes fatigue, palpitation, or dyspnea. IV Unable to carry on any physical activity without discomfort. Symptoms of heart failure at rest. If any physical activity is undertaken, discomfort increases.
29 CHAPTER I II RESULTS Descriptive Statistics In this sample, participants (N = 71) were mostly White (90.1%) and female (53.5%). The average age was 60.56 years ( SD = 11.05; range 40 92). Over half of participants (52.1%) were married, 60.6% had post secondary education (more than 12 years), and 69.1 % had a household income of less than $50,000. Furthermore, most participants (53.5%) fell within NYHA class II. A majority (70.4%) self identified as Catholic or Christian, 16.9% self identified as "very religious", and 32.4% self identified as "very spir itual." Complete descriptive statistics for the demographic variables are presented in Table 2. Death anxiety in this sample ( M = 32.75, SD = 19.83) was similar to that from the initial validation study conducted on patients with advanced or metastatic cancer ( M = 34.00, SD = 20.00) of the DADDS. Meaning in life scores for presence ( M = 24.45, SD = 6.70) and search ( M = 22.51, SD = 7.85) in this sample fell near the clinical cutoff of 24. The three subsca les of the MEMS were all similar to each other: comprehension ( M = 23.66, SD = 6.08), purpose ( M = 25.10, SD = 5.34), and mattering ( M = 23.00, SD = 6.93) , with possible scores on all three subscales ranging from 7 35 . Depression ( M = 6.96, SD = 4.08) and anxiety ( M = 7.94, SD = 4.72) scores were at or near the clinically significant range (greater than 7 is considered borderline depression/anxiety ). The mean health related quality of life in this sample, as measured by MLHFQ, was 54.18 ( SD = 26.50; range 2 10 4 with greater scores indicating lower quality of life) . Participants' mean rating of the likelihood to receive a DT LVAD was 2.13 ( SD = 0.83; range 1 4).
30 The sample was slightly skewed on the decision outcome (skewness = 0.38) with 22. 5% rating the decision "extremely unlikely," 37.9% rating the decision "unlikely," 23.9% rating the decision "likely," and only 5.6% rating the decision "extremely likely." Furthermore, the mean perceived quality of life with a DT LVAD was 4.65 ( SD = 2.56; range 0 10 with 10 being a greater quality of life), and the mean perceived quantity of life with a DT LVAD was 6.06 ( SD = 2.41 ; range 0 10 with 10 being a greater quantity of life). The descripti ve statistics for the predictors and covariates, as well as those for the outcome and perception questions, are presented in Tables 3 and 4, respectively. Hypothesis 1 To test hypothesis 1, Pearson correlations were used to examine the relationship between death anxiety and meaning in life. Death anxiety was not significantly correlated to the presence of meaning in life, r = 0.07, p = 0.54. Although the direction of the relationship was as hypothesized (the greater the meaning in life, the less death anxiety was present), the relationship was not statistica l l y significant . However, death anxiety was significantly related to the search for meaning, r = 0.53, p < .001, indicating that the greater the death anxiety, the greater the search for meaning in life. Table 5 presents correlation coeff icients for all variables. Correlation coefficients of 0 .10 are considered small effects, 0 .30 are considered medium or moderate effects, and 0 .50 are considered large effects (Cohen, 1988) . Hypothesis 2 To test hypothesis 2, stepwise linear regressions were used to determine the unique contributions of death anxiety and meaning in life to the outcome of the likelihood of receiving a DT LVAD. Two separate regressions were calculated , one with death
31 anxiety as the last predictor entered into the model and the other with presence of meaning in life as the final predictor entered into the model. In both regressions, d emographic variables ( age, sex, ethnicity, marital status, education, income, religiosi ty, and spirituality) were entered first, followed by NYHA classification . In the third step, depression, anxiety, and health rel ated quality of life w ere entered . Finally, death anxiety was entered in the last step. T he stepwise linear regression analysis with death anxiety pred icting the decision like lihood was not significant, F (13 , 57 ) = 0.90 , p = 0.56 , R 2 = 0.17 . The change in R 2 after adding death anxiety into the model was not significant , R 2 " = 0.01, p = 0.38 . The demographic, NYHA, and psychological variables (depression, anxiety, health related quality of life) explained 16% of the variability in decision likelihood, and adding death anxiety into the model only increased this to 17%. See Table 6 . A stepwise linear regression was used to determine if presence of meaning in life would predict the likelihood of receiving a DT LVAD. Similar to the first regression, demographic variables (age, sex, ethnicity, marital status, education, income, religiosity, and spirituality) were entered fir st, followed by NYHA classification. In the third step, depression, anxiety, and health related quality of life w ere entered. The presence of meaning in life was entered alone into the final step of the model. The overall model was not significant, F (13 , 57 ) = 0.88 , p = 0.58 , R 2 = 0.17. The change in R 2 after adding death anxiety into the model was not significant , R 2 " = 0.01, p = 0.44 . Just as in the first model, t he demographic, NYHA, and psychological variables (depression, anxiety, health related qual ity of life) explained 16% of the variability in decision likelihood, and adding the presence of meaning in life into the model only increased this to 17%. See Table 7 .
32 Because death anxiety ( r = 0.18, p = 0.13) , presence of meaning in life ( r = 0.11, p = 0.36) , and search for meaning ( r = 0.12, p = 0.30 ) were not significantly correlated to the decision likelihood outcome, it was not warranted to run a linear stepwise regression analysis combining both variables into a single step . This is also supporte d by the nonsignificant findings of the main two regression analyses . Exploratory Analyses To fully accomplish the first aim of this study in examining general relationships between death anxiety and meaning in life in participants with advanc ed HF, addit ional correlational, regression, moderation, and meditation analyses were used in an exploratory manner to better understand relationships among existential and psychological factors. Correlational Analyses As mentioned previously, death anxiety, although not significantly related to presence of meaning in life , was related to search for meani ng, Death anxiety was also significantly correlated with age ( r = 0 .56 , p < 0.001 ), sex ( r = 0 .31 , p < 0.0 1 ), education ( r = 0 .28 , p < 0.05 ), depression ( r = 0.47 , p < 0.001 ), anxiety ( r = 0 .64 , p < 0.001 ), and health related quality of life ( r = 0.51 , p < 0.001 ). Interestingly, death anxiety was not significantly related to existential factors of c omprehension ( r = 0.11, p = 0.35), m attering ( r = 0.06, p = 0.60), or p urpose ( r = 0.08, p = 0.49), as measured by the MEMS. The presence of meaning in life was significantly related to search for meaning ( r = 0.33 , p < 0.0 1) , depression ( r = 0.41 , p < 0.001) , anxiety ( r = 0.35 , p < 0.0 1) , and all three exis tential variables of comprehension ( r = 0.69 , p < 0.001) , mattering ( r = 0.57 , p
33 < 0.001) , and purpose ( r = 0.57 , p < 0.001) . Furthermore, the search for meaning in life was related to age ( r = 0.42 , p < 0.001), depression ( r = 0. 42 , p < 0.001), and anxiety ( r = 0.64 , p < 0.001). It was significantly related only to the comprehension factor of the MEMS ( r = 0.34 , p < 0.0 1) and to the total ( r = 0.28 , p < 0.05 ) and emotional quality of life measures ( r = 0. 36 , p < 0. 01), not physical qual ity of life ( r = 0. 21 , p = 0.0 8 ). Moreover, none of the MEMS variables (comprehension, mattering, and purpose) were significantly related to self reported health related quality of life. It is important to note that the likelihood of receiving a DT LVAD w as only significantly related to mattering ( r = 0. 24 , p < 0.05 ) , purpose ( r = 0. 46 , p < 0.001) , and perception of quality ( r = 0. 35 , p < 0.0 1) and perception of quantity of life ( r = 0.30 , p = 0.01 ). See Table 5 for all correlational analyses. Regressio n Analyses S tepwise linear regressions were used to determine the unique contributions of demographic, psychological, and existential variables to death anxiety, presence of meaning in life, and search for meaning in life. In all three regressions, demograph ic variables (age, sex, ethnicity, marital status, education, income, religiosity, and spirituality) were entered first, followed by NYHA classification. In the third step, depression, anxiety, and health related quality of life were entered. In the linear regression model examining death anxiety, both presence of meaning and search for meaning were entered into the fourth step. The final model including all predictors was significant, F (13, 57) = 7.98, p < 0.01, and explained roughly 65% of the variability in death anxiety, R 2 = 0.65. By adding depression, anxiety, and health related quality of life into the third step of the model, there was a significant increase in the
34 variability of death anxiety that was expl ained, R 2 " = 0.16, F (3, 59) = 8.21, p < .001. However, adding p resence and search for meaning into the model d id not significantly increase R 2 , R 2 " = 0.03, F (2, 57) = 2.53, p = .09. See Table 8 . In the linear regression model exami ning presence of meaning in life , death anxiety was entered alone i nto the fourth step. The final model including all predictors was significant, F (12, 58 ) = 2.24 , p < 0.05 , and explained roughly 32% of the variability in presence of meaning, R 2 = 0.32 . By adding depressi on, anxiety, and health related quality of life into the third step of the model, there was a significant increase in the variability of presence of meaning in life that was explained, R 2 " = 0.18 , F (3, 59) = 4.86 , p < .0 1. However, adding death anxiety into the model did not significantly increase R 2 , R 2 " = 0.03, F ( 1, 58 ) = 2.67 , p = .1 9. See Table 9 . In the linear regression model examining search for meaning in life, death anxiety was entered alone into the fourth step. The final model including all predictors was significant, F (12, 58) = 5.26 , p < 0.0 01 , and explained over 50% of the variability in search for meaning, R 2 = 0.52 . By adding depression, anxiety, and health related quality of life into the third step of the model, there was a significant increase in the variability of search for meaning in life that was explained, R 2 " = 0.24 , F (3, 59) = 9.83 , p < .0 0 1. However, add ing death anxiety into the model did not significantly increase R 2 , R 2 " = 0.01 , F (1, 58) = 1.10 , p = .30 . See Table 10 . Multicollinearity diagnostic guidelines indicate that VIF (variance inflation factors) should be less than 5. VIFs greater than 1 indic ate moderate correlations, and VIFs above 5 indicate strong correlations. In all three regression models, VIFs typically ranged from 1.2 to 2.5, indicating that multicollinearity was occurring. The variables
35 entered into the third step of the models (depre ssion, anxiety, and health related quality of life) were likely controlling for the variability in death anxiety and meaning in life. Therefore, the predictive variability contributed by death anxiety and meaning in life was diminished. Moderation Analyses To further explore relationships among existential and psychological factors, moderation analyses were performed to better understand the association of presence of and search for meaning on psychological variables. Given the significant correlati ons among search for meaning with depression, death anxiety, and health related quality of life, as well as presence of meaning with depression but not with death anxiety or health related quality of life, moderation analyses were used to better understand the effects of search for meaning in life on psychological va riables at different levels of presence of meaning. Presence of meaning and search for meaning were both first centered around their means and then subsequently used in the analysis. The centere d variable of search for meaning was entered into the model followed by the centered presence of meaning variable. Lastly, an interaction term was created by multiplying the centered variables of presence and search for meaning and entered into the model l ast . T here was a significant moderation (interaction term) between search for meaning and presence of meaning on depression, b = .02 , SE = 0.01 , ! = .30 , p < .0 1 . The effect of search for meaning on depression depended upon the degree of presence of meaning, as depicted in F igure 1. Individuals with greater search for meaning reported more depressive symptoms but only if there was a lack of presence of meaning in life. Therefore, those who were actively searching for meaning and lacked any presence o f it
36 tended to have the most depressive symptoms . The slope for high presence was not significant, ! = .11, p = .41. Thus, individuals with a great deal of meaning in their life reported lower depression, regardless of how much they were searching for meaning. There was also a significant moderation between presence of mea n ing and search for meaning on health related quality of life , b = .12 , SE = 0.05 , ! = .25 , p < .05 , as depicted in F igure 2 . The same steps were used in that both search for and presence of meaning were centered, and an interaction term was created. All three were entered into the model in a stepwise manner. Similar to the depression outcome, presence of meaning moderated the relationship between search for meaning and health related quality of life. Higher scores on this health related quality of life measure indicate worse quality of life. Therefore, individuals with greater search for meaning reported poorer he alth related quality of life but only if there was a lack of presence of meaning in life. The slope for high presence was not significant, ! = .09 , p = .55 . Thus, individuals with a great deal of meaning in their life reported lower health related quality of life , regardless of how much they were searching for meaning. Given that search for meaning was significantly correlated with death anxiety but presence of meaning was not , a moderation a nalysis was used to determine if presence of meaning could be moderating this relationship between search and death anxiety . The centered variables and interactions terms remained the same as in the previous moderation analyses. However, this model did not demonstrate a significant moderation effect , b = .03 , SE = 0.04 , ! = .09 , p = .39 , indicating that presence of meaning did not moderate a relationship between search for meaning and death anxiety. The main effect of search for meaning on death anxiety was significant, b = 1.48, SE = .28, ! = .59, p <
37 .001, even after controlling for presence of meaning. Finally, as age was significantly related to death anxiety and se arch for meaning, a moderation analysis was calculated to determine how age might be i nfluencing the relationship between th ese two. There was a significant moderation of age on search for meaning and death anxiety, b = .05 , SE = 0.02 , ! = .23 , p < .05 , as depicted in F igure 3. As search for meaning increases, so does death anxiety. However, the slope for high age was not sig nificant, ! = .20 , p = .09 . Thus, the effect of search for meaning on death anxiety was more prevalent for younger individuals in this sample than for older individuals ( M age = 60.56) . Mediation Analyses Considering s earch for meaning and death anxiety are highly correlated ( r = 0.53 , p < .001 ) , a mediation analysis was performed to better understand the relationship between these two variables . Therefore, a mediation analysis was performed to understand how death anxiety could be mediating the relationship between search for meaning and psychological outcomes , namely depression and health related quality of life . To test for a mediation, direct relationships between the variables were first examined through linear regressions , and then all variables are entered into the model to see if a significant relationship still exists between predictor and outcome, after controlling for the mediator . S ee Fi gures 4 7 for mediation models. For the outcome of depression, search for meaning (X) was significantly related to both the proposed mediator of death anxiety (Z; R 2 = . 28 , F (1, 69) = 26.97 , p < .00 1 ) and depression (Y; R 2 = . 17 , F ( 1, 69 ) = 14.52 , p < .00 1 ). Additionally, death anxiety (Z) was significantly related to depression (Y; R 2 = .24 , F ( 1, 69) = 21.38 , p < .00 1 . ) The
38 final step, where both search for meaning and death anxiety were regressed on depression, supported full mediation; the overall model with both search for meaning and death anxiety entered as predictors was significant ( R 2 = . 27 , F (2, 68) = 12.69, p < .001), but when death anxiety was controlled for, the relationship between search for meaning and depression became non significant b = 0.12; t = 1.81 , p = .07 . A Sobel test was conducted and found a significant full mediation in the model ( t = 2.62, p < .01). This indicates that death anxiety completely mediated the relationship between search for meaning and depression. Th us, greater search for meaning relates to increased death anxiety, which in turn relates to greater depression. For the outcome of health related quality of life, search for meaning (X) was significantly related to both th e proposed mediator of death anxiety (Z; R 2 = . 28 , F (1, 69) = 26.97 , p < .001 ) and health related quality of life (Y; R 2 = . 08 , F (1, 69) = 5.78 , p < .05 ). Additionally , death anxiety (Z) was significantly related to health related quality of life (Y); R 2 = .26 , F (1, 69) = 24.53 , p < .001. The final step, where both search for meaning and death anxiety were regressed on health related quality of life , supported full mediation; the overall model with both search for meaning and death anxiety entered as predictors was significant ( R 2 = .26 , F (2, 68) = 12. 09 , p < .001), but when death anxiety was controlled for, the relationship between search for meaning and health related quality of life became non significant, b = 0.03 ; t = 0.07 , p = .95 . A Sobel test was conducted and found a significant full mediation in the model ( t = 3.23 , p = .0 0 1). This indicates that death anxiety completely mediated the relationship between search for meaning and health related quality of life . Thus, greater search for meaning relates to increased death anxiety, which in turns relates to poorer health related quality of life .
39 Table 2 Participant Characteristics Variable N (%) Age M ( SD ) = 60.56 (11.05) Female Ethnicity 38 (53.5%) White 64 (90.1%) African American Asian Other 5 1 1 (7.0%) (1.4%) (1.4%) Marital Status Single Married Divorced Widowed Education 9 37 18 7 (12.7%) (52.1%) (25.4%) (9.9%) 12 years 28 (39.4%) 13 years 7 (9.9%) 14 years 11 (15.5%) 15 years 16 years 17+ years 6 10 9 (8.5%) (14.1%) (12.7%) Income Less than $20,000 19 (26.8%) $20,000 $34,999 19 (26.8%) $35,000 $49,999 11 (15.5%) $50,000 $74,999 10 (14.1%) $75,000 $99,999 6 (8.5%) More than $100,000 NYHA Classification Class II Class III Class IV Religious Affiliation Catholic Protestant Christian Non Protestant Christian Jewish Atheist Agnostic Other Religiosity Very religious Moderately religious Slightly religious Not religious at all Spirituality Very spiritual Moderately spiritual 6 38 13 20 14 24 12 3 1 5 12 12 34 14 11 23 29 (8.5%) (53.5%) (18.3%) (28.2%) (19.7%) (33.8%) (16.9%) (4.2%) (1.4%) (7.0%) (16.9%) (16.9%) (47.9%) (19.7%) (15.5%) (32.4%) (40.8%)
40 Table 3 Descriptive Statistics of Predictor Variables and Covariates Variable M ( SD ) Min Max Skew Kurtosis Death Anxiety 32.75 ( 19.83 ) 0 72 0.29 1.06 Meaning in Life Presence 24.45 (6.70) 8 35 0.54 0.21 Meaning in Life Search 22. 51 (7.85) 5 35 0. 56 0.23 Existential Comprehension 23.66 (6.08) 9 35 0.11 0.31 Existential Purpose 25.10 (5.34) 10 35 0.01 0.19 Existential Mattering 23.00 (6.93) 7 35 0.17 0.44 Depression 6.96 (4.08) 0 19 0.64 0.12 Anxiety 7.94 (4.72) 0 19 0.34 0.72 Health Related Quality of Life 54.18 (26.50) 2 104 0.10 0.96 Note. Death anxiety measured using the Death and Dying Distress Scale (DADDS). Meaning in life measured using The Meaning in Life Questionnaire (MILQ) , which is comprised of both Presence and Search subscales. Existentialism was measured using The Multidimensional Existential Meaning Scale (MEM S), which is comprised of three subscales: Comprehension, Purpose, and Mattering. Depression and Anxiety was measured using the Hospital Anxiety and Depression Scale (HADS) . Health related quality of life measured by the Minnesota Living with Heart Failure Questionnaire (MLHFQ ). Table 4 Descriptive Statistics on Outcome and Perception Questions Variable % M ( SD ) Min Max Skew Kurtosis Decision Likelihood 2.13 (0.83 ) 1 4 0.38 0.31 Extremely Unlikely 22.5% Unlikely 47.9% Likely 23.9% Extremely Likely 5.6% Quality of Life Perception Quantity of Life Perception 4.65 6.06 (2.56 ) (2.41) 0 0 10 10 0.20 0.23 0.71 0.65 Note . The decision likelihood question was a 4 point Likert type scale, ranging from Extremely Unlikely to Extremely Likely. The quality of life and quantity of life perception questions used a 10 point Likert type scale, ranging from Worse Quality of Life to Better Quality of Life and Least Time Left to Live to Most Time Left to Live, respectively. Slightly spiritual 9 (12.7%) Not spiritual at all 10 (14.1%)
41 Table 5 Correlations among Covariates, Predictors, & Outcomes (N = 71). Â p < .06, * p < .05, ** p < .01 , *** p < .001 Variable 1 2 3 4 5 6 7 8 9 10 1. Age -2. Female .24* -3. NYHA Class .13 .01 -4. Education .00 .16 .17 -5. Income .07 .12 .00 .13 -6. Religiosity .01 .24* .02 .02 .12 -7. Spirituality .07 .20 .02 .08 .19 .74*** -8. Depression .31** .04 .12 .03 .07 .06 .00 -9. Anxiety .56*** .23 Â .04 .05 .10 .04 .14 .58*** -10. Quality of Life Physical .30* .21 .28* .11 .12 .12 .04 .51*** .41*** -11. Quality of Life Emotional .44*** .27* .21 .17 .01 .15 .10 .51*** .63*** .85*** 12. Quality of Life Total .40** .17 .31** .14 .13 .13 .07 .54*** .48*** .96*** 13. Existential Comprehension .05 .04 .05 .03 .12 .12 . 04 .44*** .41*** .02 14. Existential Mattering .05 .03 .02 .06 .05 .30* .30* .40** .13 .00 15. Existential Purpose .14 .11 .18 .17 .09 .21 .15 .35** .02 .02 16. Presence of Meaning .05 .04 .05 .11 .17 .12 .10 .41** .35** .19 17. Search for Meaning .42*** .19 .09 .03 .03 .11 .21 .42*** .64*** .21 18. Death Anxiety .56*** .31** .11 .28* .02 .16 .18 .49*** .64*** .44*** 19. Quality of Life Perception .31** .11 .10 .15 .17 .04 .10 .22 .32** .10 20. Quantity of Life Perception .18 .21 .08 .04 .30* .16 .22 .13 .05 .15 21. Decision Likelihood .17 .01 .09 .09 .11 .02 .11 .04 .13 .17
42 Table 5 continued Correlations among Covariates, Predictors, & Outcomes continued (N = 71). Â p < .06, * p < .05, ** p < .01 , *** p < .001 Variable 1 1 1 2 1 3 1 4 1 5 1 6 1 7 1 8 1 9 20 11. Quality of Life Emotional -12. Quality of Life Total .92*** -13. Existential Comprehension .14 .05 -14. Existential Mattering .04 .02 .70*** -15. Existential Purpose .11 .05 .59*** .76*** -16. Presence of Meaning .19 .12 .69*** .57*** .57*** -17. Search for Meaning .36** .28* .39** .10 .04 .33** -18. Death Anxiety .59*** .51*** .11 .06 .08 .07 .53*** -19. Quality of Life Perception .22 Â .18 .13 .07 .07 .09 .30* .27* -20. Quantity of Life Perception .14 .21 .05 .06 .04 .07 .06 .07 .49*** -21. Decision Likelihood .18 .15 .12 .24* .46*** .11 .12 .18 .35** .30*
43 Table 6 Linear Regression with Death Anxiety Predictin g Decision Likelihood (N = 71). Model 1 Model 2 Model 3 Model 4 Variable s B SE B ! B SE B ! B SE B ! B SE B ! Age 0.02 0.01 0.23 0.02 0.01 0.24 0.01 0.01 0.18 0.01 0.01 0.13 Sex 0.10 0.22 0.06 0.11 0.22 0.07 0.13 0.22 0.08 0.15 0.22 0.09 E thnicity 0.27 0.13 0.26* 0.27 0.13 0.26* 0.26 0.13 0.26 * 0.24 0.13 0.23 Marital Status 0.06 0.08 0.09 0.06 0.08 0.10 0.06 0.09 0.09 0.05 0.09 0.08 Education 0.06 0.06 0.13 0.05 0.06 0.11 0.06 0.06 0.13 0.07 0.06 0.17 Income 0.04 0.07 0.07 0.04 0.07 0.07 0.03 0.07 0.05 0.02 0.07 0.04 Religiosity 0.19 0.16 0.21 0.19 0.16 0.21 0.16 0.17 0.19 0.15 0.17 0.17 Spirituality 0.20 0.15 0.24 0.19 0.15 0.23 0.19 0.15 0.23 0.20 0.15 0.24 NYHA 0.10 0.12 0.10 0.12 0.13 0.13 0.12 0.13 0.13 Depression 0.01 0.03 0.06 0.12 0.04 0.10 Anxiety 0.01 0.03 0.05 0.00 0.03 0.00 Quality of Life 0.01 0.0 1 0.15 0.00 0.00 0.13 Death Anxiety 0.00 0.01 0.17 R 2 0 . 13 1.20 0 . 1 4 0.70 0.16 0.33 0.17 0.78 F for change in R 2 * p < .05
44 Table 7 Linear Regression with Meaning in Life (Presence) Predictin g Decision Likelihood (N = 71). Model 1 Model 2 Model 3 Model 4 Variable s B SE B ! B SE B ! B SE B ! B SE B ! Age 0.02 0.01 0.23 0.02 0.01 0.24 0.01 0.01 0.18 0.01 0.01 0.16 Sex 0.10 0.22 0.06 0.11 0.22 0.07 0.13 0.22 0.08 0.12 0.22 0.07 E thnicity 0.27 0.13 0.26* 0.27 0.13 0.26* 0.26 0.13 0.26* 0.24 0.13 0.24 Marital Status 0.06 0.08 0.09 0.06 0.08 0.10 0.06 0.09 0.09 0.06 0.09 0.09 Education 0.06 0.06 0.13 0.05 0.06 0.11 0.06 0.06 0.13 0.05 0.06 0.12 Income 0.04 0.07 0.07 0.04 0.07 0.07 0.03 0.07 0.05 0.02 0.07 0.04 Religiosity 0.19 0.16 0.21 0.19 0.16 0.21 0.16 0.17 0.19 0.16 0.17 0.18 Spirituality 0.20 0.15 0.24 0.19 0.15 0.23 0.19 0.15 0.23 0.20 0.15 0.24 NYHA 0.10 0.12 0.10 0.12 0.13 0.13 0.13 0.13 0.13 Depression 0.01 0.03 0.06 0. 01 0.04 0. 03 Anxiety 0.01 0.03 0.05 0.01 0.03 0.08 Quality of Life 0.01 0.01 0.15 0.00 0.01 0.13 Meaning in Life 0.01 0.02 0.11 R 2 0 . 13 1.20 0 . 1 4 0.70 0.16 0.33 0.17 0.62 F for change in R 2 * p < .05
45 Table 8 Linear Regression with Meaning in Life (Presence and Search) Predicting Death Anxiety (N = 71). Model 1 Model 2 Model 3 Model 4 Variables B SE B ! B SE B ! B SE B ! B SE B ! Age 1.04 0.17 0.58** 1.04 0.17 0.58** 0.57 0.19 0.32** 0.48 0.19 0.27* Ethnicity 3.38 2.32 0.14 3.37 2.34 0.14 3.54 2.03 0.15 2.22 2.07 0.09 Marital Status 1.69 1.56 0.11 1.69 1.57 0.11 0.89 1.37 0.06 0.57 1.36 0.04 Education 2.86 1.02 0.27** 2.89 1.05 0.27** 2.56 0.91 0.24** 2.76 0.89 0.26** Income 0.36 1.22 0.03 0.36 1.23 0.03 0.70 1.10 0.06 0.07 1.12 0.01 Religiosity 1.97 2.97 0.09 1.96 2.30 0.09 2.36 2.65 0.11 1.92 2.59 0.09 Spirituality 2.28 2.80 0.12 2.29 2.82 0.12 1.52 2.46 0.08 0.66 2.43 0.03 NYHA 0.34 2.19 0.02 0.37 2.03 0.02 1.13 2.02 0.05 Depression 0.91 0.54 0.19 1.05 0.55 0.22 Â Anxiety 1.20 0.09 0.29* 1.00 0.58 0.24 Quality of Life 0.07 0.09 0.10 0.09 0.09 0.11 Presence of Meaning 0.56 0.29 0.19 Â Search for Meaning 0.45 0.29 0.18 R 2 0.45 7.44 0.45 0.02 0.61 8.21 0.65 2.53 F for change in R 2 Â p < .06 , * p < .05, ** p < .01 , *** p < .001
46 Table 9 Linear Regression with Death Anxiety Predicting Presence of Meaning in Life (N = 71). Model 1 Model 2 Model 3 Model 4 Variables B SE B ! B SE B ! B SE B ! B SE B ! Age 0.04 0.07 0.07 0.05 0.08 0.08 0.09 0.09 0.15 0.04 0.09 0.06 Ethnicity 1.46 1.01 0.18 1.47 1.10 0.18 1.30 0.93 0.16 0.96 0.05 0.12 Marital Status 0.42 0.67 0.08 0.43 0.68 0.08 0.18 0.63 0.03 0.26 0.62 0.05 Education 0.37 0.44 0.10 0.42 0.45 0.12 0.37 0.42 0.10 0.62 0.44 0.17 Income 0.71 0.53 0.17 0.70 0.53 0.17 0.42 0.51 0.10 0.35 0.50 0.08 Religiosity 0.79 1.29 0.11 0.80 1.29 0.11 0.31 1.22 0.04 0.08 1.21 0.01 Spirituality 0.39 1.21 0.06 0.36 1.22 0.05 0.72 1.13 0.11 0.58 1.12 0.09 NYHA 0.65 0.94 0.09 0.36 0.94 0.05 0.40 0.92 0.05 Depression 0.51 0.25 0.31* 0.60 0.25 0.37* Anxiety 0.41 0.24 0.29 0.53 0.25 0.37* Quality of Life 0.03 0.04 0.10 0.02 0.04 0.07 Death Anxiety 0.10 0.06 0.29 R 2 0.10 1.02 0.11 0.47 0.29 4.86 0.32 2.67 F for change in R 2 * p < .05, ** p < .01 , *** p < .001
47 Table 10 Linear Regression with Death Anxiety Predicting Search for Meaning in Life (N = 71). Model 1 Model 2 Model 3 Model 4 Variables B SE B ! B SE B ! B SE B ! B SE B ! Age 0.31 0.08 0.44 ** 0.31 0.08 0.44** 0.09 0.08 0.13 0.06 0.09 0.08 Ethnicity 1.26 1.06 0.13 1.26 1.07 0.13 1.32 0.90 0.14 1.11 0.93 0.12 Marital Status 1.28 0.71 0.33 Â 1.38 0.72 0.22 Â 0.93 0.61 0.15 0.88 0.61 0.14 Education 0.10 0.47 0.03 0.08 0.48 0.02 0.01 0.41 0.00 0.14 0.43 0.03 Income 0.43 0.56 0.09 0.42 0.56 0.09 0.88 0.49 0.18 0.84 0.48 0.17 Religiosity 0.22 1.36 0.03 0.21 1.37 0.03 0.60 1.18 0.07 0.45 1.19 0.05 Spirituality 1.80 1.28 0.23 1.79 1.29 0.23 1.01 1.10 0.13 0.92 1.10 0.12 NYHA 0.26 1.00 0.03 1.25 0.90 0.14 1.27 0.90 0.14 Depression 0.32 0.24 0.17 0.26 0.25 0.14 Anxiety 0.96 0.23 0.58** 0.89 0.24 0.52** Quality of Life 0.06 0.04 0.21 0.07 0.04 0.23 Death Anxiety 0.06 0.06 0.15 R 2 0.27 3.28 0.27 0.07 0.42 9.83 0.42 1.10 F for change in R 2 Â p < .06 , * p < .05, ** p < .01 , *** p < .001
48 Figure 1. Presence of meaning as a moderator on the relationship between search for meaning and depression. Figure 2. Presence of meaning as a moderator on the relationship between search for meaning and health related quality of life. 0 2 4 6 8 10 12 Low Search High Search Depression Low Presence High Presence 18 28 38 48 58 68 78 Low Search High Search Health related QOL Low Presence High Presence
49 Figure 3. Age as a moderator on the relationship between search for meaning and death anxiety. 20 10 0 10 20 Low Search High Search Death Anxiety Low Age High Age
50 Figure 4. Direct pathway between search for meaning and depression with standardized beta coefficients. *** p < .001 Figure 5 . Mediated model with indirect pathways between search for meaning, death anxiety, and depression with standardized beta coefficients. *** p < .001 Search for Meaning (X) Search for Meaning (X) Death Anxiety (Z) Depression (Y) Depression (Y) .42*** .53*** .49*** .22
51 Figure 6. Direct pathway between search for meaning and health related quality of life with standardized beta coefficients. * p <. 05, *** p < .001 Figure 7. Mediated model with indirect pathways between search for meaning, death anxiety, and health related quality of life with standardized beta coefficients. * p <. 05, *** p < .001 Search for Meaning (X) Health Related Quality of Life (Y) Search for Meaning (X) Death Anxiety (Z) Health Related Quality of Life (Y) .28* .53*** .51*** .01
52 CHAPTER I V DISCUSSION Although many philosophical theories posit a relationship among death anxiety and meaning in life, little research has examined the links between these constructs. In fact, no published studies to this author's knowledge ha ve examined empirical relationships between these existential factors within a sample of medically ill patients, for whom death anxiety and meaning in life are likely quite salient. Thus, this study serves as a foundation f or not only understanding how t hese factors i nfluence one another but also impact real life medical decisions for patients with advanced disease. The aims of the current study were 1) to examine the relationship between death anxiety and sense of life meaning in patients with advanced HF, a nd 2) to examine, using clinical vignettes with a sample of advanced HF patients, whether death anxiety and sense of life meaning provide unique contributions to the decision to receive a DT LVAD . Furthermore, exploratory analyses were performed to fully u nderstand the relationships among these existential factors. To comprehensively conceptualize the first aim of the study, the primary hypothesis will be discussed first , followed by a discussion of exploratory analyses and possible next steps to better und erstand the relationships between the se existential variables, as well as implications for clinical care. Then, the second aim of the study will be discussed, including methodological issues that likely occurred. Death Anxiety and Meaning in Life Aim 1 : Primary Hypothesis It was hypothesized that death anxiety and presence of meaning would be inversely related in that higher meaning would relate to lower death anxiety , but this
53 hypothesis was not statistically supported by the results . Results from the c urrent study indicate that presence of meaning in life and death anxiety were not signi ficantly related to each other. However, t he direction of the r elationship was as hypothesized in that there was a negative correlation between these two variables. The initial hypothesis was based upon terror management theory (TMT), which posits a theoretical inverse relationship between meaning and death anxiety. It would seem that th ese results do not support TMT, but upon further reflection , it appears that the lack of statistical significance between death anxiety and presence of meaning in life does actually align well with TMT and may provide evidence of how this theory translates into empirical data. TMT is perhaps the most well known and well studied theory regarding death anxiety, and a plethora of studies examining mortality salience and cultural worldviews have been undertaken over the years. Given its emphasis on understanding how death anxiety impact s human behavior, it seems that the application of TMT to medical patient populations would be obvious. However, this application has not previously occurred within the literature. Therefore, the current study may pr ovide the first empirical evidence that supports TMT in a patient population with advanced disease. This lack of a significant correlation between death anxiety and presence meaning in life may be consistent with TMT, which states that humans essentially suppress death anxiety to avoid thinking and feeling this "annihilation anxiety" and do so by focusing instead on what gives their life meaning or brings about a sense of immortality. In this way, having a sense of meaning in life can act as a protective factor . In fact, presence of meaning in li fe was significantly related to better health related quality of life and less psychological distress. I ndividual s who state that they are experiencing death anxiety will not yet have
54 developed or enacted their protective factor of instead focusing on what gives their life meaning. Alternatively , for an indi vidual who feels a greater sense of meaning in life, it would potentially create a cognitive dissonance to also think and feel anxious about death (Festinger, 1957 ) . Because of the distress or psychological discomfort that occurs with cognitive dissonance, death anxiety and presence of meaning in life effectively cannot occur simultaneously. On the other hand, it appears that searching for meaning and death anxiety can, and do, hap pen simultaneously. Having a sense of meaning provides a framework for life and is an innately human experience , and the distress that occurs when one does not have a meaningful framework for life is just as human an experience (Baumeister, Vohs, Aaker & G arbinsky, 2013) . The results in this study mirror previous results that state actively searching for meaning in life is correlated with negative outcomes (Steger et al., 2006) , and these results indicate that these relationships also hold true w ithin a sam ple of advanced HF patients . T hese results illustrate that HF patients who are distressed by needing to find a sense of meaning in life are also those who are more likely to endor se feeling anxious about death. Without meani ng, death is more distressing. H uman beings strive to create something that will live on after death, and without that, the anxiety of dying becomes more overwhelming. Therefore, just as presence of meaning can be thought of as a protective factor, searching for meaning can be understood in terms of a risk factor for greater psychological distress and possibly an indicator of overall existential distress . Aim 1: Exploratory Analyses of Existential Factors Because death anxiety and meaning in life have not previously been studied in
55 pa tient populations, this study set out to explore, in an empirical manner, the relationships among existential and psychological factors. Therefore, to fully accomplish the first aim of this study in examining overarching, general relationships between deat h anxiety and meaning in life in participants with advanced HF, additional correlational, regression, moderation, and mediation analyses were used. Wh ereas previous researchers have discussed existential distress in theoretical terms (Kissane, 2000; Vehling & Philipp, 2018) , t hese exploratory analyses lead to a greater , more comprehensive , and empirically based understanding of this concept . For individuals with progressive and life limiting illnesses whose mortality is quite salient , existential co ncerns such as loss of meaning and uncertainty are prevalent, and the emotional distress that accompanies these types of concerns has been termed "existential distress" (Kissane, 2000). E xistential distress is conceptualized as a "distinct dimension" of il lness related distress (Vehling & Philipp, 2018, p. 47). For example, observed depression or sadness in an advanced HF patient may be rooted in psychological distress, existential distress, or a combination of both. Although highly related to each other, e xistential distress and psychological distress are uniquely different in their origin s and manifestation s , but u nderstanding the relationships among these domains is integral to creating a comprehensive framework of existential distress for medically ill p atients. In the regression models predicting death anxiety, presence of meaning, and search for meaning, adding depression, anxiety, and health related quality of life into the various models significantly increased the amount of variability explained. Th ese findings indicate that psychological distress is often associated with and potentially predictive of existential distress , as measured by death anxiety and lack of meaning .
56 However, studies with cancer patients have shown that patients' distress does n ot always fit or meet diagnostic criteria for DSM mental disorders, and according to Vehling and Philipp (2018, p. 47), "current psychiatric classification does not capture the full spectrum of cancer related distress." Although the majority of research in this area is with cancer patients, i t i s r easonable to assume that HF patients' distress, as measured in this study, is comparable to those with cancer given that both populations face similar existential threats. Similarly, results from this study parall el results from studies with cancer patients where psychological and existential distress are correlated but do appear to be distinct domains. It is possible that measures to assess psychological distress often capture aspects of existential pain and suffe ring, which may i nflate the actual relationships between these domains. Additionally, perhaps subthreshold psychological distress that does not meet criteria for a mood disorder is indicative of existential pain. In this study, average depression ( M = 6.96 ) and anxiety ( M = 7.94) scores were at or near the cutoff for clinical significance (greater than 7). Th us, an individual who reports minimal or mild psychological distress may be suffering more from existential distress than typical depression or anxiety . The MEMS (Multidimensional Existential Meaning Scale) was used in an exploratory manner in this study to better understand the relationships among existential variables. Death anxiety was not significantly related to the three subscales of comprehension, m attering, and purpose. However, all three subscales were significantly related to presence of meaning in life. Perhaps these other existential aspects are similar to meaning in life in that if purpose, comprehension , and mattering are present, death anxiet y is suppressed. If this is the process that occurs, then it lends to a fuller
57 understanding of TMT in that the "cultural worldview" th at is a dapt ed is a much richer and complex factor, which actually includes various aspects of existential functioning such as having a sense of meaning, having a purpose, feeling as though you matter in life, and having a comprehensive framework for the world in which yo u live. Though this study is cross sectional in nature and uses only correlations, it does provide an interesting framework for further research to better understand how death anxiety and other potential aspects of existential distress can interact with each other. Furthermore, searching for meaning was signifi can tly related to comprehension but not mattering or purpose. This also potentially leads to an interesting conclusion that the well e stablished relationship between searching for meaning and psychological distress is actually due to a lack of comprehension. According to the meaning maintenance model, individuals strive to have a comprehensive framework for life and integrate new experiences into that framework. Finding a "gestalt" in life is natural and instinctive ( Heine, Proulx, & Vohs, 2006). A ctively sear ching for meaning may indicate a general lack of a meaningful framework in life, but just because one is searching for meaning does not mean that there is not some existential stability brought about by a sense of mattering and purpose. This warrants futur e research to fully understand what searching for meaning truly entails and how it may impact an individual, as well as how it interacts with other existential variables. "Spiritual pain," as originally termed by Dame Cicely Saunders (1988), is "pain caus ed by the extinction of the being and the meaning of the self" (Murata, 2003, p. 15). A great deal of focus has been on the distress, vulnerabilities, or risk factors associated with spiritual pain, but results from this study indicate that there may also be existential protective factors. As mentioned previously, presence of meaning can serve as a
58 protective factor. For individuals facing death, feeling as though life is meaningful can provide a sense of coherence and purpose, which in turn can minimize the amount of death anxiety experienced. Also, m oderation analyses show that those who have greater presence of meaning in life reported lower depression and better health related quality of life , regardless of how much they were actively searching for meaning. Having a better and fuller sense of meaning in life may protect oneself from existential challenges that occur when faced with a life limiting illness such as HF . Additionally, age may serv e as a natural protective factor. For most individuals, a greater search for meaning is related to more death anxiety, but this was most predominant for younger individuals in this sample. Given that the mean age of participants was 60 years of age, with a standard deviation of 11 years, "younger" is a relative term, but for those individuals less than 60 years of age, searching for meaning appears to be more deleterious. The oldest adults in this sample were, in a sense, protected from the negative effect of searching for meaning. Thus, as one ages, it is possible that there is less distress associated with actively searching because the focus shifts to attending to the meaning that is already present for the remaining lifespan. Aim 1: Next Steps For those who work with seriously ill patients, alleviating existential distress or "spiritual pain" has become a priority , and interventions like Dignity Psychotherapy (Chochinov et al., 2005 ) and Meaning Centered Psychotherapy (Breitbart & Poppito, 2014) target existential challenges. However, this study shows that there is still a great deal about existential distress and protective factors that have yet to be fully understood. These results potentially support the notion of various unconscious processes such as
59 cognitive dissonance and suppression of death anxiety , and because of this, they also provide an interesting perspective on how these existential constructs can and should be examined from an empirical standpoint. Specifically, cross sectional stud y designs limit the ability to examine these types of unconscious processes and leave critical questions unanswered. For instance, is death anxiety inherently negative? Can the presence of death anxiety directly lead to increased meaning? Is death anxiety the causal factor that makes searching for meaning so distressing? In mediational analyses, death anxiety fully mediated the relationship between searching for meaning and both depression and health re l a ted quality of life. Because this was a cross section al study design , assumptions about causality cannot be made, but these results give evidence that further studies that can infer causality are warranted. Fully understanding these relationships among existential and spiritual variables and their various i nteractions may alter how interventions are developed for alleviating spiritual pain for patients nearing the end of life. If it is indeed a protective factor, perhaps interventions should be aimed at increasing and/or sustaining meaning of life for indivi duals , by integra ting exercises like legacy projects or discussing personal and individualistic sources of meaning ( Breitbart & Poppito, 2014; Chochinov et al., 2005 ) . Also, a better understanding of these factors and how they impact patients may influence how medical providers have goals of car e conversations with patients. Perhaps physicians and palliative care teams should be addressing and discussing death anxiety and meaning in life more directly when patients make decisions that will impa ct their heal th and well being. Results from this study indicate that these are important factors to assess and consider when treating patients with advanced disease. LeMay and Wilson (2008), in a
60 review of manualized treatments for existential distress, state that "ex istential and spiritual suffering are poorly understood by health care professionals...(and) clear and theoretical frameworks are required to develop effective interventions" (p. 490). C ontinuing research that examines this is imperative to providing more comprehensive and holistic care for patients. Furthermore, given that this sample was HF patients, it provides evidence that similar processes may be occurring for individuals, regardless of their diagnosis or health state. M uch of the research and accomp anying interventions have focused on cancer patients and cancer related challenges. Patients with advanced HF face similar existential threats like death anxiety and fear of uncertainty and live every day with functional limitations from their disease. Res earch within the oncology realm has laid a solid foundation thus far, but to truly understand how these types of illnesses impact patients, further research within different medical diagnoses should be explored , especially when examining the impact of exis tential distress on diagnosis specific medical decisions. Medical Decision Making Aim 2 : Primary Hypothesis It was hypothesized that both death anxiety and presence of meaning in life would significantly and independently predict the likelihood of receiving a DT LVAD for patients with advanced HF. Clinical vignette methodology was used, wherein a hypothetical vi gnette detailing the risks and benefits of receiving a DT LVAD was presented , and participants were asked to make a hypothetical decision about receiving a DT LV AD. To best understand how spiritual and existential factors impact those who are living with a dvanced HF , the participants sampled for this study were actual patients with
61 symptomatic HF that met NYHA criteria for classes II , III, and IV . In this sample, over half (53%) rate d their symptoms as NYHA class II , indicating that the majority of particip ants experienced fairly regular symptoms when engaging in physical activity, presumably making their HF diagnosis at least intermittently salient in their lives. Therefore, this sample serves as a fitting analog for patients living with progressive medical illnesses who are able to continue normal daily functioning. However, although they were experiencing HF symptoms, a majority of the sample's actual symptoms were likely not yet severe enough to have warrant ed discussions with their medical providers rega rding LVADs or other aggressive surgical interventions to minimize symptoms and prolong life. Because an aim of this study was to examine how existential factors impact decision making regarding invasive surgical treatments at the end of life, this study t ook a prospective approach to decision making research. After reading a hypothetical vignette, participants were asked to rate the likelihood of choosing to receive a DT LVAD. Interestingly, the likelihood of choosing to receive a DT LVAD was not significantly related to death anxiety or presence of meaning in life, nor NYHA classification or quality of life. Furthermore , no regression models predicting the decision likelihood outcome w ere signifi cant, regardless of covariates entered into the models. It is unclear why this occurred, although several reasons may exist. It is possible that with a larger sample size and subsequently more power, predictive analyses may have significant effects. Howeve r, given that the likelihood outcome was not significantly correlated with many factors, it is far more likely that basic methodological issues were prese nt, thus impacting the results. Aim 2: Methodological Issues
62 Problems in methodology may have resulted in studying participant's decision making in a less than transparent manner. To better understand how methodology may have impacted the results, it is first important to understand the characteristics of the sample used in the study. As mentioned previous ly, the sample of participants in this study were HF patients who were experiencing symptoms in their daily life. However, other aspects of this sample may have been skewed or not fully representative of a HF sample. For instance, although the sample was older, which is similar to a heart failure population, over 90% of the sample (N = 64) identified as White, indicating this was not an ethnically diverse sample of HF patients . Furthermore , a significant portion of the sample had po st secondary education of some type, with almost 48% reporting 13 16 years of education, and over 12% reporting greater than 16 years of education. This high percentage of individuals reporting post secondary education does not seem representative of a HF sample , and this leads to the conclusion that this particular sample was highly educated. Typically, there is a strong correlations between years of education and income, but most participants stated their yearly household income was less than $35,000. It is possible that many of the participants were retired or receiving disability benefits and potentially had spouses with minimal income as well, thus resulting in lower family incomes. Overall, although the sample met criteria of having diagnosed HF and at least NYHA class II symptoms, it was likely not entirely representative of a typical HF sample, thereby limiting the generalizability of the results. Additionally, t he variability of the decision likelihood variable was interesting in that almost 70% of participants stated they were unlikely (either "extremely unlikely" or "unlikely") to receive the DT LVAD. Because of the nature of HF care, t here are no exact
63 data regarding percentages or proportions of patients who accept a DT LVAD compared to those who decline . Cardiac patients who need a dvanced therapies are seen in various medical settings such as primary care offices, outpatient HF clinics, hospitals, or emergency departments, making conversations about HF therapies difficult to capture from an empirical standpoint. Therefore, it is difficult to ascertain population data about prevalence of accepting DT LVADs. However, it is likely that a 70% decline rate is not an accurate representation of the population at large , especially given that humans are , in a sense, " wired " to avoid death. Therefore, the prevalence of decliners in this study leads to further methodological questions not only about this study but also about decision making research in general . Pr evious methodological research has examined the biases that influence, and ultimately limit, decision making research. Most research in this area is retrospective in that patients are asked to recall what led to their decisi ons. Though this type of researc h can be incredibly valuable and informative, there is ample evidence that individuals ' recall of past memories or experiences are extremely biased. Ross (1989) posited that individuals reconstruct previous experiences based upon what the y believe most lik ely happened. In a seminal study examining recall of coping, there was low concordance among daily coping and retrospective coping , even for an event that occurred only a week prior (Ptacek, Smith, Espe & Raffety, 1994). This, and other similar studies, add to an understanding that retrospective study designs are rife with biases that may influence results. These outcome altering biases are especially important when attemptin g to determine factors that influence previous medical decisions. In essence, foc using scientific methodology around individuals who are usually fairly poor historians lead s to
64 skewed outcomes. To circumvent these retrospective biases, this study was pros pective wherein patients who were already symptomatic from HF were asked to imagin e themselves at a more advanced stage of the disease and make a medical decision based upon that future scenario. In constructing the hypothetical vignette used in this study, efforts were made to ensure it was as methodologically sound as possible. It wa s modeled after a vignette used in a previous study examining decision making for HF patients (Magid et al., 2015) and presented to several HF patients for feedback and revision prior to use in the study . Additionally, the vignette followed many recommenda tions set forth by Evans et al. (2015), including using vague elements to facilitate participant engagement and thinking, highlighting key variables such as quantity versus quality of life, and using present tense language. Blumenthal Barby and Krieger (20 15), in a review of medical decision making research, state that many studies using hypothetical vignettes do not include a cost benefit scenario that includes potential costs to patient values or goals. The present study aimed to include this cost/benefit scenario by discussing that the person may "live several more years" but the quality of life "is expected to suffer." The language was kept purposefully vague as to include all aspects of quality of life that might influence this decision for a person. Fo r some, spending time with family makes a better quality of life, but for others, it might be staying physically active. This varies person to person, and this vignette was designed in such a way so that a wide array of individuals could relate to the scen ario. To understand how participants perceived the hypothetical vignette, questions about their perception of quality and quantity of life ( on a 1 10 Likert type question) in
65 the scenario were asked. Perceived quality of life was slightly less ( M = 4.65) than perceived quantity of life ( M = 6.06), but both averaged in the mid point of the scale. This indicates that participants understood that the DT LVAD would provide an extended life, but as a result, they may also have a lower quality of life. Given these results, it appears that the vignette created a "trade off" scenario as intended, and individuals did understand purpose of the scenario. However, despite this understanding, the prevalence of decliners for DT LVAD suggests that individual had a difficult time truly imagining themselves in the situation and forecasting a possible medical decision. Research suggests that individuals are not just poor historians, but they are also poor forecasters. When people make decisions, there are a whole ho st of heuristics and biases that aid in decision making to minimize the mental effort involved , such as default bias, availability bias, and impact bias. Impact bias, for instance, states that individuals are unable to accurately estimate future emotional states (Blumenthal Barby & Krieger, 2015). A great deal of research has been dedicated to understanding how biases impact future decisions in a variety of contexts, and one of the most well known researchers in this area, Daniel Gilbert, details the variou s psychological, neuroscientific, and philosophical underpinnings of these biases in his book, Stumbling on Happiness (2006). The thesis of his work illustrates that when emotion is involved, forecasting is increasingly difficult. Because medical decisions regarding end of life treatment are so emotionally bound, these biases are likely more influential in this type of decision making research. This recognition leads to the conclusion that context matters when making these types of important decisions. In t his study, it is po ssible that participants did not fully understand , logically and emotionally, that DT LVADs are one of the last
66 medical therapies that can prolong life, and without this particular type of intervention, there are little to no other advan ced therapies for HF patients. Without that recognition and undersanding, the salience of death and inherent fear of dying is diminished. Perhaps if a statement had been included explicitly indicating that death was more imminent without a DT LVAD , partici pants may have reacted to the vignette differently. This reaction still would likely be significantly different than that in a "real life" scenario in the moment making a decision, but it may have been more realistic than the vignette that was presented to them. Without th e context that includes actually experiencing advanced symptoms and realizing that a DT LVAD is one of the last medical therapies available to prolong life and minimize symptoms, fear of impending death, and the influence of relationship s with loved ones and medical providers, individuals' prospective decisions are very likely to be biased in a number of ways. This study aimed to establish relationships among these variables that have yet to be examined in conjunction with one another, wh ile understanding that the methodology of using hypothetical vignettes was less than ideal. Despite being less than ideal, these methodologies are used often in the literature due to practical and ethical concerns of sampling seriously ill patient popula ti ons and may, in some ways, be among the most effective and efficient method s available. Conclusions and Future Directions Existential factors such as death anxiety and meaning in life can have significant effects on patient well being, especially for thos e suffering from progressive and life limiting illnesses like HF , leading to an increase in "spiritual pain." However, it is possible that some existential factors like older age and the presence of meaning in life
67 can actually act as protective factor s against increased existential distress or suffering. Interventions like Meaning Centered P sychotherapy aim to alleviate existential suffering, but a more comprehensive and thorough understanding of the interrelationships among these factors and their impa ct on patient thoughts, feelings, and behavior can lead to more effective and focused treatments. Also, although the majority of research is with cancer patients, understanding the effect of existential distress on other patient populations like HF will pr ovide a fuller and more robust framework of existential factors. Furthermore, though there is a focus on understanding factors that impact shared decision making, there is a lack of research examining how "spiritual pain" may affect end of life medical dec isions. To fully grasp the impact of this on decisions, well designed studies that capture decision making factors are imperative. Given the limitations that exist in decision making research, especially with emotionally laden contexts and perhaps unconsci ous processes, incorporating other innovative and creative methodologies in these types of studies could enhance the overall study design and statistical power in identifying factors that contribute to decision making. For instance, using a variation of t he Implicit Association Test (IAT; Greenwald, McGhee, & Schwartz, 1998) may uncover participants' implicit attitudes or associations with DT LVADS or other types of end of life interventions. It may shed light on how positively or negatively they view a DT LVAD, and those results may have interesting correlations to their explicit decisions regarding DT LVADs. It is possible that explicit and implicit decisions about end of life therapies may be impacted by environmental or psychological factors. Understand ing basic attitudes of patients towards advanced therapies may have profound effects on integrating a patient's goals of care in their
68 medical treatment. Moreover, r ecognizing the biases that exist in prospective decision making has interesting and far reaching implications on patient care, with the most notable being advanced medical directive s. Patients are asked to complete advanced directives and decide beforehand which life sustaining treatments they would prefer, yet the research clearly shows that individuals are inaccurate at deciding what they would do in the future, especially for a decision that is so context dependent and emotionally laden. These prospectiv e end of life decisions are especially influenced by current health state , including hospitalization and symptom burden ( Ditto, Jacobsen, Smucker, Danks, & Fagerlin , 2006). When a patient is healthy , aggressive medical therapies tend to be preferred . Howev er, this changes when patients become more ill, at which point they are less likely to prefer aggressive measures (Ditto et al. , 2006). These studies show that an individual's preferences and choices change over time as their health state changes , and incr eased mortality salience may be an important factor in this . T he focus of patient care is ensuring that patients make informed decisions that are a shared process between patient and provider. To be part of this collaborative approach, patients need to be aware of the factors that influence their own decisions. Yet, given that some of these factors may unconscious or not even assessed , like death anxiety or meaning in life, patients may not be truly "informed" of their own psychological and existential conc erns. These realizations lead to interesting and thought provoking questions such as: Do patients need to be "informed" about their own existential processes to understand what factors may be contributing to their decisions? When patients are depressed or suicidal, psychologists or other medical providers intervene to
69 ensure that their decision making is not impaired. Perhaps the same standard should be implemented for existential distress or spiritual pain, leading to the need for further and more thorough assessment and evaluation of existential distress. Further research is needed to fully understand how existential factors impact patients and their medical decisions, ideally with longitudinal designs to examine both prospective and actual decisions that are made.
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79 APPENDIX A NYHA C LASSIFICATION 1. ! When resting, do you experience heart failure symptoms such as shortness of breath, fatigue, or palpitations? 2. ! What amount of physical activity causes heart failure symptoms such as shortness of breath, fatigue, or palpitations? a. ! Ordinary physical activity b. ! Less than ordinary physical activity c. ! Any type of physical activity
80 A PPENDIX B DEMOGRAPHIC QUESTIONNAIRE 1. ! What is your age? 2. ! What is your sex? a. ! Male b. ! Female 3. ! Which of the following best describe(s) your ethnicity? a. ! White b. ! Black c. ! Hispanic d. ! Asian e. ! American Indian/Native American f. ! Hawaiian/Pacific Islander g. ! Other 4. ! What is your current marital status? a. ! Single b. ! Married c. ! Separated d. ! Widowed e. ! Divorced 5. ! What is the highest gra de (or year) of regular school you have completed? 6. ! To which religious affiliation do you identify with? a. ! Catholic b. ! Protestant Christian c. ! Jewish d. ! Islamic/Muslim e. ! Buddhist f. ! Latter Day Saints g. ! Atheist h. ! Agnostic i. ! Other 7. ! To what extent do you consider yourself a religious person? a. ! Very religious b. ! Moderately religious c. ! Slightly religious d. ! Not religious at all 8. ! To what extent do you consider yourself a spiritual person? a. ! Very spiritual b. ! Moderately spiritual c. ! Slightly spiritual d. ! Not spiritual at all 9. ! What is your yearly househ old income in US dollars? a. ! Under $20,000 b. ! $20,000 $34,999
81 c. ! $35,000 $49,999 d. ! $50,000 $74,999 e. ! $75,000 $99,999 f. ! $100,000 and over
82 APPENDIX C THE DEATH AND DYING DISTRESS SCALE (DADDS) Having cardiovascular disease can bring to mind thoughts and feelings about life and death among older adults. Listed below are several thoughts or concerns that some older adults with cardiovascular disease may think about, at any stage of their disease. Please tell us how distressed you felt over t he past 2 weeks about each item listed below. By distress, we refer to generally negative feelings such as being angry, afraid, sad, or anxious. If you have many different negative feelings about an item, choose your answer based on the strongest negative feeling that you've had. Please choose only one number per line. 0 = I was not distressed about this thought or concern. 1 = I experienced very little distress. 2 = I experienced mild distress. 3 = I experienced moderate distress 4 = I experienced great distress. 5 = I experienced extreme distress. Over the past two weeks, how distressed did you feel about: 1. ! Not having done all the things I wanted to do. 2. ! Not having said all that I wanted to say to the people I care about. 3. ! Not having achieved my life goals and ambitions. 4. ! Not knowing what happens near the end of life. 5. ! Not having a future. 6. ! The missed opportunities in my life. 7. ! Running out of time. 8. ! Bein g a burden to others. 9. ! The impact of my death on my loved ones. 10. ! My own death and dying. Over the past two weeks, how distressed did you feel that your own death and dying may: 11. ! Happen suddenly or unexpectedly. 12. ! Be prolonged or drawn out. 13. ! Happen when I am alone. 14. ! Happen with a lot of pain or suffering. 15. ! Happen very soon .
83 APPENDIX D THE MEANING IN LIFE QUESTIONNAIRE (MILQ) Please take a moment to think about what makes your life feel important to you. Please respond to the following statements as truthf ully and accurately as you can, and also please remember that these are very subjective questions and that there are no right or wrong answers. Please answer according to the scale below: 1. ! I understand my life's meaning. 2. ! I am looking for something that makes my life feel meaningful. 3. ! I am always looking to find my life's purpose. 4. ! My life has a clear sense of purpose. 5. ! I have a good sense of what makes my life meaningful. 6. ! I have discovered a satisfying life purpose. 7. ! I am always searching for something that makes my life feel significant. 8. ! I am seeking a purpose or mission for my life. 9. ! My life has no clear purpose. 10. ! I am searching for meaning in my life.
84 APPENDIX E THE MULTIDIMENSIONAL EXISTENTIAL SCALE (MEMS) Please read the following items ca refully. Using the response scale, indicate the extent to which you agree or disagree with that statement. 1 = Very strongly disagree 2 = Strongly disagree 3 = Disagree 4 = Neither disagree nor agree 5 = Agree 6 = Strongly agree 7 = Very strongly agree 1. ! My life makes sense. 2. ! There is nothing special about my existence. 3. ! I have aims in my life that are worth striving for. 4. ! Even a thousand years from now, it would still matter whether I existed or not. 5. ! I have certain life goals that compel me to keep going. 6. ! I have overarching goals that guide me in my life. 7. ! I know what my life is about. 8. ! I can make sense of the things that happen in my life. 9. ! I have goals in life that are very important to me. 10. ! I understand my life. 11. ! Whether my life ever existed matters even in the grand scheme of the universe. 12. ! My direction in life is motivating for me. 13. ! I am certain that my life is of importance. 14. ! Looking at my life as a whole, things seem clear to me. 15. ! Even considering how big the universe it, I can say that my life matters.
85 APPENDIX F HOSPITAL ANXIETY AND DEPRESSION SCALE (HADS) Choose the response that is closest to how you have been feeling in the past week. 1. ! I feel tense or "wound up" . a. ! Most of the time b. ! A lot of the time c. ! From time to time, occasionally d. ! Not at all 2. ! I still enjoy the things I used to enjoy. a. ! Definitely as much b. ! Not quite so much c. ! Only a little d. ! Hardly at all 3. ! I get a sort of frightened feeling as if something awful is about to happen. a. ! Very definitely and quite badly b. ! Yes, but not too badly c. ! A little, but it doesn't worry me d. ! Not at all 4. ! I can laugh and see the funny side of things. a. ! As much as I always could b. ! Not quite so much now c. ! Definitely not so much now d. ! Not at all 5. ! Worrying thoughts go through my mind. a. ! A great deal of the time b. ! A lot of the time c. ! From time to time, but not too often d. ! Only occasionally 6. ! I feel cheerful. a. ! Not at all b. ! Not often c. ! Sometimes d. ! Most of the time 7. ! I can sit at ease and feel relaxed. a. ! Definitely b. ! Usually c. ! Not often d. ! Not at all 8. ! I feel as if I am slowed down. a. ! Nearly all the time b. ! Very often c. ! Sometimes d. ! Not at all
86 9. ! I get a sort of frightened feeling like "butterflies" in the stomach. a. ! Not at all b. ! Occasionally c. ! Quite often d. ! Very often 10. ! I have lost interest in my appearance. a. ! Definitely b. ! I don't take as much care as I should. c. ! I may not take quite as much care. d. ! I take just as much care as ever. 11. ! I feel restless as I have to be on the move. a. ! Very much indeed b. ! Quite a lot c. ! Not very much d. ! Not at all 12. ! I look forward with enjoyment to things. a. ! As much as I ever did b. ! Rather less than I used to c. ! Definitely less than I used to d. ! Hardly at all 13. ! I get sudden feelings of panic. a. ! Very often indeed b. ! Quite often c. ! Not very often d. ! Not at all 14. ! I can enjoy a good book or radio or TV program. a. ! Often b. ! Sometimes c. ! Not often d. ! Very seldom
87 APPENDIX G MINNESOTA LIVING WITH HEART FAILURE QUESTIONNAIRE The following questions ask how much your heart failure affected your life during the past month (4 weeks). After each question, choose the number to show how much your life was affected. If a question does not apply to you, choose 0 after that question. 0 = No 1 = Very little 2 3 4 5 = Very much Did your heart failure prevent you from living as you wanted during the past month (4 weeks) byÃ‰ 1. ! Causing swelling in your ankles or legs? 2. ! Making you sit or lie down to rest during the day? 3. ! Making your walking about or climbing stairs difficult? 4. ! Making your working around the house or yard difficult? 5. ! Making your going places away from home difficult? 6. ! Making your sleeping well at night difficult? 7. ! Making your relating to or doing things with your friends or family difficult? 8. ! Making your working to earn a living difficult? 9. ! Making your recreational pastimes, sports or hobbies difficult? 10. ! Making your sexual activities difficult? 11. ! Making you eat less of the foods you like? 12. ! Making you short of breath? 13. ! Making you feel tired, fatigued, or low on energy? 14. ! Making you stay in a hospital? 15. ! Costing you money for medical care? 16. ! Giving you side effects from treatment? 17. ! Making you feel you are a burden to your family or friends? 18. ! Making you feel a loss of self control in your life? 19. ! M aking you worry? 20. ! Making it difficult for you to concentrate or remember things? 21. ! Making you feel depressed?
88 APPENDIX H HYPOTHETICAL VIGNETTE Destination therapy left ventricular assist device (DT LVAD): A mechanical pump that is implanted in patients who have heart failure to help the heart's weakened left ventricle (the major pumping chamber of the heart) pump blood through the body. "Imagine you are an advanced heart failure patient who is considering whether or not to receive a destination therapy left ventricular assist device (DT LVAD) because medications are no longer working . The doctors state that you will likely live several more years longer than you would without the surgery. However, the surgery can cause m ajor complications and burdens, including a disabling stroke, a serious infection, or a major bleed that requires medical attention. There is a 50% chance you will develop a major complication. Y our quality of life is expected to suffer , and you may be una ble to do many of the things in life that are important to you."
89 APPENDIX I PERCEPTIONS OF QUALITY VERSUS QUANTITY POST DT LVAD 1. ! How likely would you be to get the surgery if this were you? 1. ! Extremely Unlikely 2. ! Unlikely 3. ! Likely 4. ! Extremely Likely 2. ! After reading the s cenario above, please rate how much you thought your quality of life would be impacted by receiving a DT LVAD. 1 2 3 4 5 6 7 8 9 10 Worse Quality of Life Better Qual ity of Life 3. ! After reading the scenario above, please rat e how much you thought your quan t ity of life would be impacted by receiving a DT LVAD. 1 2 3 4 5 6 7 8 9 10 Least Time Left to Live Most Time Left to Live