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Edgar Allan Poe, “The Pit and the Pendulum,” and Ventricular Assist Devices

2009; American Association of Critical-Care Nurses; Volume: 29; Issue: 6 Linguagem: Inglês

10.4037/ccn2009249

1940-8250

Cheryl Zambroski, Pamela Combs, Sherill Nones Cronin, Carole Pfeffer,

Cardiac Structural Anomalies and Repair

Nurses must target interventions toward reducing the uncertainty associated with living with a ventricular assist device.Edgar Allan Poe wrote the timeless short story "The Pit and the Pendulum" nearly 20 years before the Civil War (see Box for synopsis). Certainly, at that time, he could not even have imagined the medical technology now available to patients with heart failure, most notably, ventricular assist devices (VADs). Yet, in many ways, his story captures many of the same feelings experienced by VAD patients today. Frank (a pseudonym), a 58-year-old man we interviewed about his experience of living with a VAD, stated the following:Although the comparison of the experience of living with a VAD to the experience of the narrator in "The Pit and the Pendulum" who was sentenced to death and confined to prison does not provide an easy image for nurses who care for patients who have VADs, the diagnosis of heart failure can be a sentence: a sentence to an uncertain future, physical decline, and even death.According to the American Heart Association,2 more than 5 million adults live with the diagnosis of heart failure. Despite the national trend toward improving outcomes in cardiovascular diseases in general, 1 of every 8 deaths in the United States is in some way attributable to heart failure. About 20% of all patients with heart failure die within 1 year of diagnosis.2 Once a patient's illness has progressed to advanced heart failure, 1-year mortality is greater than 30%.3 In fact, only about 40% to 60% of heart failure patients survive 5 years after diagnosis.4–6 Even with proper medical care, diminishing functional status can result in confinement physically (eg, through multiple hospitalizations or becoming increasingly homebound) or emotionally (eg, through progressing depression or social isolation).In addition to high mortality, patients with advanced heart failure often experience physical and psychological signs and symptoms that may remain unrelieved until the time of death. Dyspnea, fatigue, edema, anxiety, depression, and even pain are just a few of the common signs and symptoms.7–12 Experts7,13–16 in the care of patients with heart failure assert that pharmacological treatment according to heart failure guidelines is the foundation of all strategies for managing symptoms. Nevertheless, some heart failure is refractory to pharmacological treatment.3,17For patients with intractable signs and symptoms, a heart transplant, the reference standard for cardiac replacement,18,19 is the only established surgical approach.13 In the United States, however, the number of patients awaiting heart transplantation is much greater than the number of available donors. As of September 11, 2009, a total of 2874 patients were on the national heart transplant waiting list.20 The number of donors available between 2001 and 2007 ranged from 2015 to 2209, indicating a deficit in the number of available hearts each year. Even when patients receive a heart transplant, the waiting time for a heart donor is long, approximately 50 to 503 days, depending on a patient's transplant status.20As a result of the disparity between the number of patients needing transplants and the number of hearts available, mechanical circulatory assist devices are being used with increasing frequency as a bridge to transplant.21 Since 2002, implantable assist devices have been considered destination therapy (ie, rather than as a bridge to transplant) for patients who are not eligible for transplant21 and whose estimated 1-year mortality is greater than 50% with medical therapy.13,22,23 According to Grady and Shinn,21 by the end of 2006, nearly 13000 VADs had been implanted. Nearly 12000 patients are currently included in registries associated with VADs.24VADs are typically used to stabilize patients' clinical states while improving cardiac output via support of the ailing ventricle.25 Improved cardiac output then results in increased end-organ perfusion and, ideally, improves activity tolerance to the extent that patients who would be symptomatic with minimal exertion can be discharged to home. Device therapies are not problem-free; postoperative mortality associated with multiple organ failure, stroke, infection, hemorrhage, and even device malfunction remains high.21,25–28 Survival rates for patients who receive VADs as destination therapy are varied and depending on associated risk factors, range between 11% (very high risk) and 81% (low risk).26,29,30Examples of commonly used VADs include the HeartMate VE and XVE and HeartMate II. All are implantable (typically in the right upper part of the abdomen) and electronically driven. In general, VADs consist of a pump, a control system, and a power supply (see FigureF1). An inflow tube is placed in the apex of the left ventricle; blood flows through the pump (maintained by the power supply) and then is pumped through an outflow tube into the aorta. The pump may be either pulsatile or nonpulsatile,25 but both kinds essentially supplement left ventricular function. Tubing from the pump exits the body to the pump's outside power unit, which provides information on the function of the VAD and can be attached to a battery system to provide increased mobility when the patient wishes. The battery pack can be worn in a vest or a waist pack, or the patient can plug the unit into a wall socket when needed.Each VAD has specific features,21 but all VADs have general features related to patients' experiences in and out of the hospital. Before discharge, each patient and his or her family members must undergo extensive education to prepare them for the challenges they face. Typically they learn about the VAD itself (eg, function, components, warning lights), how to maintain the device (eg, system checks, maintenance and cleaning, how to order supplies), and what to do if problems occur (eg, troubleshooting and emergency responses).21 Then they must learn how to care for the external driveline, including proper dressing changes to minimize the risk of infection. Patients also may require anticoagulants to decrease the risk of thromboembolism. Even activities such as travel in a car may need to be altered because deployment of air bags may cause damage to the VAD or bleeding.21In a qualitative study31 conducted in the acute care setting, registered nurses thought that patients with VADs were in a unique situation compared with other chronically ill patients. According to these nurses, the hospitalized VAD patients and the patients' families required extensive emotional support during adjustment to the device and while waiting for transplantation. On the basis of their own clinical experience, the nurses reported that the VAD patients often experienced marked fear, anxiety, boredom, and depression, necessitating additional psychological support beyond that required by other hospitalized chronically ill patients.Although patients' psychological experiences related to VADs were the focus of a few early studies,32,33 exploration of such experiences in the acute care setting and in the community is still needed. Our study was designed to gain a better understanding of the experience of living with a VAD.Principles of naturalistic inquiry guided the study.34,35 Participants were recruited from the transplant center of a 442-bed acute care, university-affiliated hospital located in the southeast. Patients were selected if they had advanced heart failure and had had a VAD implanted within the preceding 12 months, were age 18 years or older, spoke English, were able to give consent for participation in the study, and lived within 3 hours' travel by car from the study site. Patients were excluded if they had a coexisting terminal illness such as cancer or primary organ failure (eg, renal or liver failure).Approval from the appropriate institutional review board was obtained before the study began. Potential participants were identified through review of transplant center records. Patients who met the inclusion criteria received letters from the nurse researcher at the transplant center that explained the study and the nature of the requested participation. Interested patients returned an enclosed postcard, and they were contacted to confirm their appropriateness for inclusion and to arrange a time and location for the interview. The underlying assumption was that patients who were willing to talk about their experiences of living with a VAD thought that they had important information to share.Qualitative interviewing was used. In order to facilitate data collection, a semistructured interview guide was developed on the basis of previous research,31 review of the literature, and consultation with VAD program staff. Examples of questions include the following: "Tell me what it was like to live with a VAD," "Tell me how your daily life has changed since you received the device," and "Tell me what else about having a VAD is important to talk about." Probing questions were asked to assist participants in clarifying content and to increase the descriptiveness of the responses.Basic sociodemographic data (including age, sex, living situation, and ethnicity) were also collected during the interview. Each patient was interviewed at his or her home; the interviews were 45 to 90 minutes long. Field notes were written and/or dictated after the conclusion of each interview.Interviews were tape-recorded and were transcribed verbatim. Data were analyzed on an ongoing basis; qualitative content analysis36 was used to generate major conceptual categories. A key patient was interviewed a second time to verify the emerging themes. Further, a consultant (C.P.) from the Department of English, Bellarmine University, Louisville, Kentucky, with expertise in literature provided additional analysis of "The Pit and the Pendulum" as the short story was related to each theme.In total, 18 patients received either an initial or a follow-up letter from the transplant center. Of these, 2 men and 4 women, 42 to 76 years old (mean, 59; SD, 11.3) volunteered to participate in the study. Both men and 2 of the women were white; the other 2 women were African American. One man was married; the other lived alone but had a significant other who visited him regularly. Three of the women were married; the fourth lived with other family. At the time of the interviews, 5 of the 6 patients had received heart transplants. The duration of use of a VAD varied widely (mean, 181 days; SD, 147; range, 28–407). One woman decided to accept the VAD as destination therapy rather than undergo transplantation.During the interviews, a patient articulated his experience of choosing and ultimately living with a VAD via an analogy with "The Pit and the Pendulum." As the patient described the themes of his experience, we realized that the language of the other patients in the study corresponded closely with several themes of the short story. Four critical themes emerged: facing the unknown, feeling confined, living with fear, and hope for the future.Upon awakening in the darkness of his prison cell, the narrator in "The Pit and the Pendulum" reaches out his hand, striving "to imagine where and what I could be."1(p157) He realizes he is not dead, but he also wonders whether he has "been remanded to my dungeon, to await the next sacrifice."1(p158) His relief at being alive is mitigated, however, by the unknown circumstances confronting him. He gives voice to his fear of his unknown future: "Was I left to perish of starvation in this subterranean world of darkness; or what fate, perhaps even more fearful, awaited me?"1(p159) Exploration of the darkness in the cell reveals the pit, which lies directly in his path, a chasm bathed in the unknown, and he admits that he has narrowly avoided succumbing to his death. As the story unfolds, the narrator travels blindly, confused, disoriented by his surroundings, and enveloped in fear at what awaits him, both in the long- and the short-term.Like Poe's character, our patients (identified by pseudonyms) discussed their constant reminder of facing the unknown while living with a VAD. In discussing the period when he was waiting for a transplant, Frank, a 58-year-old man who lived with his wife of many years, said, "I had no idea how long I was going to be on the VAD; we're talking about years at a time. I thought [it was overwhelming]." These comments call to mind Poe's narrator, who is regularly overcome by "the agony of suspense"1(p158) and the "terrors"1(p162) of his situation.The narrator drifts in and out of consciousness, struggling with bouts of swooning and irrationality due to such visceral fear. Similarly, Joe, a 61-year-old man living alone at the time of the interview, talked about times when his mind played tricks on him: "My biggest problem was thinking about what if it ever stopped. My mind plays tricks on me, puts stupid things in my head, and that was one of them, you know, what would happen if I got stopped by the police." Joe clarified that he thought he might get arrested with the device, that police would think the holster with the battery pack was a holster with a gun.Feelings of fear of the unknown also were related to how confident patients were about the functioning of the VAD. This fear could adversely affect their lifestyle. Mary, a 42-year-old African American single mother, described her transition from being adventurous to being frightened with the VAD: "I was just that adventurous. Now it's like, okay, I'm scared to do anything because I never know what's going to happen." This fear denoted how the patients believe that the VAD is keeping them alive.The fear of not knowing how the device would perform was voiced several times, indicating how critically the patients viewed the reliable functioning of the device. Joe discussed his fear of troubleshooting the VAD when out with friends: "If I break down in the middle of the expressway and get stuck for three hours with no battery, . . . I don't want to cause an emergency. I want to get home to change my batteries." In summary, the patients described fear at many levels, as does Poe's narrator, and they also expressed a sense of isolation, another theme in "The Pit and the Pendulum."In "The Pit and the Pendulum," the narrator is confined to a prison cell, which he initially assumes is a tomb. At first, he faces complete darkness, totally dependent on others for light, food, and water. He experiences the loss of freedom physically through confinement, that is, the boundaries he remains unaware of, and emotionally because he has no interaction with others except through the knowledge that they exist because food is provided. The patients in the study also discussed feeling confined physically and emotionally. For example, Mary talked at length about her stay in the hospital, particularly the hospital room:Several patients talked about the loss of choices in the hospital, even feeling like a prisoner. For example, Mary stated:Mary also recalled the experience of waking up with the device in the intensive care unit: "When I was coming out of it, I remember they must have tied me down. . . . I was trying to get loose . . . and I didn't like that." This comment bears an eerie similarity to those made by Poe's narrator, who at one point awakens to the realization "that my personal condition had been greatly changed. I now lay on my back, and at full length . . . securely bound by a long strap."1(p163) The narrator is terrified and overwhelmed by his sense of helplessness; he has been completely dependent on others for what little food and water he has been given throughout his ordeal, and he now once again realizes that his fate rests in the hands of others.Several of our patients found dependence on others, the need to be attended by another person, to be confining. Rose, a 53-year-old African American woman who lived with her husband and children, stated that even though she felt physically better with more energy, "The only hard thing that I didn't like about it is that I couldn't do too much. I had to depend on somebody to be with me at all times. . . . I couldn't really go do shopping or go to the grocery store unless somebody was with me at all times." Evelyn, a 63-year-old married woman, spoke at length of the feelings of dependency on others in whatever she wanted to do:The patients talked of feeling shame when being in the outside world with the VAD. Frank spoke as follows:Comparisons of these experiences to those of Poe's narrator reveal striking similarities. In "The Pit and the Pendulum," the narrator's situation has been determined by others, and he has been rendered helpless, even for the food and water that mysteriously appear while he sleeps. As the story progresses, his anguish is linked partially to this ongoing dependence on others, for it is only through outside intervention that his death sentence might be commuted. His sense of frustration is palpable, and so is his fear.Early in the story, the narrator narrowly avoids falling into the pit and gives voice to the fear and pain that plague him for the duration of the story. "Victims," he asserts, are faced with various terrors, not real salvation: "There was the choice of death with its direst physical agonies, or death with its most hideous moral horrors."1(p161) Actually, the narrator experiences both physical and psychological torture, although the psychological is the most unnerving, as he awaits what he perceives to be impending doom. He admits at this point that "by long suffering my nerves had been unstrung"1(p161) and also describes "shaking in every limb."1(p161) His existence is one of ongoing fear. What saves him? Certainly nothing that is within his control. His rescue is as mysterious, inexplicable, and unpredictable as the death sentence itself.Our patients also expressed a fear so overwhelming that it encompassed their existence. Frank discussed the fear that invaded his life after the VAD implantation:The feeling of impending doom described by Poe was not uncommon in VAD recipients; the comments by several of our patients mirror the psychological torture described by Poe. For example, Mary stated the following:Patients also indicated that they were living with fear because they knew that their life was always in a precarious position. Rose described the fear she had when she made the choice to receive the VAD: "I didn't have options: I was scared. I was, at that point I was, I was scared about, you know, I wasn't going to make it." She described her family as "scared" as well: "They didn't want nothing to happen and they weren't even thinking about the transplant any-more: it was this, this machine."Despite his agony and despair, like our patients, the narrator in "The Pit and the Pendulum" clings to hope: "As I put a portion of it [food] within my lips, there rushed to my mind a half-formed thought of joy—of hope. . . . It was, as I say, a half-formed thought. . . . I felt that it was of joy—of hope . . ."1(p166) He struggles to think of ways to free himself, as the pendulum drops lower and lower toward his heart: "It was hope that prompted the nerve to quiver—the frame to shrink. It was hope—the hope that triumphed on the rack—that whispers to the death-condemned even in the dungeon of the Inquisition."1(p167)Our patients described their hope for the future as a motivator for getting through the VAD experience. As Joe noted, "When you get right down to the nitty-gritty, you say to yourself, ah, it's not the greatest of life, but I'm not quite finished with it yet." Frank, who lived with a VAD for about 4 months, made the following observation:Even while struggling with their symptoms and the device itself, VAD recipients talked about plans they were making for the future. For example, Frank stated:Overwhelmingly, patients indicated that despite the difficulties they had experienced, they would go through it all again. Mary explained:When Frank talked about adjusting to the device, he noted, "It was hard to get used to, but when you, when you weigh the circumstances, like, it's like everything else, what will you put up with for the outcome." When Kathleen, a 76-year-old married woman was asked if she would undergo implantation again, she commented, "To keep me alive? Oh, yeah, I would do that [between life and death]. . . . Oh, yeah."Each theme (facing the unknown, feeling confined, living with fear, and hope for the future) that emerged in the study contributes to a richer understanding of the experience of living with a VAD. "The Pit and the Pendulum" provides an analogy that can enhance the understanding of the experience for patients and provide targets for interventions to address the experience beyond the physiological challenges patients face in acute care and as outpatients.The first theme, facing the unknown, has parallels in studies of patients with other chronic illnesses. As expressed by our patients, the uncertainty of living with a VAD spreads into many aspects of life and influences daily routines and activities. Much like the uncertainty that occurs in chronic illness, lack of sufficient information to make the future more predictable is a constant concern.37 In research38 on patients with heart failure who were waiting for donor hearts, uncertainty was the primary theme for both patients and the patients' families. Similarly, our patients' worry about what would happen next was compounded by apprehension about the reliability of the VAD and the patients' ability to react if something went wrong. They also were uneasy about how other people would react to the device.According to Clayton et al,39 when individuals lack sufficient information to form a cognitive schema, or representation, of an illness-related event, the event may be perceived as threatening and may result in increased emotional distress and disruption of well-being. These authors39 suggested that effective communication with health care providers can reduce uncertainty. Decreasing uncertainty is particularly important as patients and their families begin to gain confidence in their ability to manage the VADs.Further, providing opportunities for patients with newly implanted VADs to speak with current or former VAD recipients may help the first group construct a schema that can guide them through the experience. One of our patients, Frank, who had the opportunity to work with a man who had lived with a VAD for a time, noted the value of being able to talk with the man about the experience. As Frank commented,In patients with heart failure, peer support can improve patients' satisfaction and self-care and reduce depressive symptoms, although the impact on long-term health outcomes needs further study.40,41 The role of individual and group peer support in patients with VADs also needs further study, particularly as survival rates increase.Similar to Shattell et al42 in their study of medical-surgical patients' experiences of acute care hospitalization, we found that feeling confined was a key theme as patients recovered from VAD implantation. Using a phenomenological approach, Shattell et al found confinement expressed through issues such as lack of privacy, feelings of personal powerlessness, and reduced physical mobility. Further, fear and a sense of disconnection from others contributed to the sense of confinement. Interestingly, several of their patients felt less confined in the intensive care unit than in the medical-surgical unit. Shattell et al attributed these findings to a greater nursing presence in the intensive care unit, a situation that diminished patients' fear and decreased feelings of disconnection. Like our patients, patients in that study42 reported the terror of being restrained and made comparisons to being in a prison or "under house arrest."Issues of confinement are also problems for psychiatric patients. For example, in a study43 of patients in an acute geropsychiatric unit, confinement to indoors was associated with increased verbal and physical aggression and with nurse-initiated use of medication, illustrating the adverse impact of confinement on behavior in a vulnerable population. Furthermore, hospitalization creates a lack of privacy, loss of personal space, and even power imbalances between staff and patients.42,44,45 Personal boundaries are altered because patients have little control over their own space, and the space they have is consistently being intruded on by staff and others.45 In our study, use of restraints, feeling dependent on others, limited mobility, and the limited size of patients' rooms contributed to the sense of confinement. Nurses must be cognizant of the need to provide opportunities to reduce the sense of confinement, particularly in acute care areas. The results of Shattell et al42 distinctly emphasize the influence of nurses in improving the environment for patients.The theme of living with fear has been reported in several studies46–50 on cardiovascular illnesses in general and on caregivers of VAD patients specifically. Using focus groups, Bosworth et al46 found that anticipatory fear was a component of the affective responses associated with quality of life in patients with heart failure. For some patients, fear was associated with the unpredictable nature of the exacerbations of heart failure. Other patients feared being a burden to their families as the signs and symptoms of heart failure progressed. This fear of becoming a burden was consistent with the findings of Horne and Payne.48 In their study,48 several patients experienced fear of burdening family members as well as fear of the dying process, readmission to the hospital, and fear of pain. In research on patients with heart failure, Selman et al49 found that patients and caregivers alike experienced fear of the dying process and death. Although these studies did not specifically include patients with VADs, importantly, receiving this life-altering device does not remove fears associated with heart failure. Nurses must be willing to assess and discuss fears patients are experiencing and to adopt interventions to help patients manage those fears.Like the findings of Winterling et al51 in their study of patients with newly diagnosed cancer, hope for the future was a common theme among the patients in our study. By using a phenomenological approach, Winterling et al found that hope gave meaning to patients' lives and was considered important. As in our study, patients used a sense of hope to cope with and manage the uncertainty that prevailed in their illness.Hope for the future is also an issue in patients with cardiovascular disease. For instance, a study52 of patients having coronary artery surgery revealed the use of hope as a coping strategy against the uncertainty of the outcome of surgery. During this study,52 a total of 214 patients responded to open-ended questions about the patients' perceptions of their health before and after open heart surgery. The patients described a need to hope, suggesting that hope was important in helping them overcome problems they faced.Interestingly, in a study53 of hospitalized patients, heart failure patients had higher hope scores than did healthy control participants. On the other hand, in a synthesis of 14 qualitative studies of older adults with heart failure by Yu et al,54 hopelessness was a primary theme. Encouragement of recollection, reflection, and recalling past successes many nurture hope in patients with heart failure.53The patients in our study revealed that hope was enhanced by having a positive outlook. One aspect of their positive outlook was associated with their religion. Several spoke of their religious beliefs and how much their religion helped them, specifically, by giving them hope for the future. An additional aspect of positivity was the positive manner of the nurses. One patient stated how important it was that the nurses not be discouraging by specifically recounting how he disliked it when the nurses would enter his room and tell him how arduous his recovery would be. Hence, nurses should not project their own perceptions onto VAD recipients.A third key factor in fostering hope for the future was the patients' significant others. Support from family, friends, and other VAD recipients helped our patients overcome negative feelings. Nurses need to continue to explore support networks among VAD recipients and to discuss strategies to support the emotional status of the recipients.Finally, a theoretical model such as that proposed by Davidson et al55 may be useful in developing interventions to help patients and patients' families adjust to the challenges of heart failure, including living with VADs. The Maintaining Hope in Transition framework encourages providers to recognize the need to acknowledge changing life circumstances, to help patients restructure reality, deal with vulnerability, achieve normalization, and resolve uncertainty.55(p61) Multiple transitions throughout heart failure should alert clinicians to provide useful information, instrumental support, advocacy, processing of events, and promotion of self-care. Increasing factors such as hope, control, and social support may improve future orientation throughout transitions. Provision of compassionate care is essential to the model.As important as the use of the model is, Davidson et al56 wrote that the constructs of hope and hopelessness are underdeveloped in the nursing literature. They urge researchers to improve conceptual development to guide interventions that may increase patients' hope, whether for increasing survival time, improving quality of life, or providing a peaceful death.This small, purposive sample of VAD recipients was heterogenous in terms of age, size, ethnicity, and duration of VAD use. Yet, the consistency of the themes among the recipients warrants further investigation in a larger sample. Although we did not collect data on types of VADs, clearly, technology in mechanical circulatory assist devices continues to improve and must be considered in future studies.Beyond the significant physical risks associated with VADs, our findings illustrate the marked psychological challenges experienced by patients predominantly (but not exclusively) in the acute care setting. Our patients experienced feelings of uncertainty, isolation, and fear in addition to the hope that led them to embrace their decision and assured them of the value of the device to their lives. Comparison of the experience of living with a VAD to the tales of Poe's classic narrator in "The Pit and the Pendulum" provides a literary analogy that emphasizes the depth and breadth of the VAD patients' experiences. The analogy can be an informative principle in patient care and provide nurses an opportunity to recognize the challenges beyond physical recovery and to design interventions to better meet patients' psychological needs.