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Corresponding author: Elizabeth Chapman, BSC, PHD, Senior Research Associate, Centre for Family Research, Free School Lane, Cambridge CB2 3RF, United Kingdom (e-mail: ecc22{at}cam.ac.uk).
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Abstract |
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• Objective To explore, through a pilot study, the impact of implantation of a ventricular assist device on patients’ bodies and lives.
• Methods This qualitative retrospective study included 6 patients (4 men and 2 women) and 3 of these patients’ relatives. Patients were from 17 to 50 years old and had used Thoratec, Heartmate, or VentrAssist devices.
• Results The participants’ accounts clustered around a number of themes, 2 of which are reported here: (1) body and self and (2) trust. Each theme comprised several subthemes: body and self had sub-themes of shock, restrictions, scarring, and infection; trust had subthemes of keeping me alive, device failure, and confidence.
• Conclusions The ventricular assist device has a considerable effect on a patient’s body and sense of self. This effect is often accommodated without much difficulty, but some patients and their families need additional psychological support during and after use of a ventricular assist device. Assessment before implantation of such a device can sometimes reveal this need, but such assessment may not be possible in emergency procedures. Trusting the new heart or the native recovered heart may be difficult for some patients. Further research is needed to understand this phenomenon.
Some patients are supported with internal or implantable VADs; others are supported with external or paracorporeal VADs. In general, patients with implantable VADs are easier to mobilize and discharge home from the hospital. Which system is used depends on the underlying cardiac condition, the urgency of treatment required, whether the patient needs univentricular or biventricular support, and the size of the patient’s body. All implantable VADs have drivelines that run from the device within the body to the controller and battery pack outside the body. The drive-line is a narrow, flexible tube with wires that connect the pumping part of the machine to the external controller and power pack. This driveline usually traverses the skin on the abdominal wall. The requirement for percutaneous access not only increases the risk of infection but also affects the patient’s sense of his or her body as whole. Patients who have recovered from the operation to insert a VAD can return home on VAD support while they await transplantation, but only if they have adequate psychosocial backup. Health-care professionals should take a holistic approach to patients in this situation and consider not only the patient’s physical care, but also psychological resources and adjustment of the patient’s family.1
As the use of VADs increases, the literature in this area is expanding rapidly. Publications describe the use and reliability of VADs2–4 and patients’ quality of life during and after VAD support.5,6 Other studies have investigated perceptions and concerns of patients and caregivers7 and psychosocial and sexual concerns.8 A small qualitative study9 investigated coping with prolonged hospitalization and the patients’ use of coping strategies, and another study10 has focused on the patient’s spouse, who takes responsibility for 24-hour support between implantation of the VAD and heart transplantation if the patient returns home. The role of the caregiver becomes more important if devices are used for long-term support of the heart (destination therapy).
Psychosocial research is underdeveloped in this area. The experience of body-image disruption that may result from implantation with a life-supporting device and the implications for life after transplantation have not been explored. Work has begun to examine changes in body image among patients with implantable cardioverter defibrillators11,12 and pacemakers,13 but these are fully implantable devices, whereas the use of a VAD with its internal and external elements may have different implications.
Formal measurement methods for body image and quality of life are not routinely used in patients with VADs at the hospital where this study took place (Papworth Hospital NHS Foundation Trust). (In a recent clinical study of the VentrAssist device, quality of life was assessed. In the "bridge to transplant" arm of the study the Utility-Based Quality of Life–Heart [UBQ-H] questionnaire was used, and for the chronic support patients the Minnesota Living with Heart Failure Questionnaire, the Short Form-36, and the UBQ-H were used. In a recently completed 3-year study of the cost-effectiveness of VADs, the Short Form-36, Euro-Quality of Life instrument, the Functional Limits Profile [UK version of the Sickness Impact Profile], and the Hospital Anxiety and Depression Scale were used with patients.) Our study was established with the aim of determining the impact of an implanted mechanical device on body image, psychological functioning, and social functioning. Approval was obtained from the appropriate research ethics committee.
| Patients on ventricular assist devices can return home while awaiting transplant only with adequate psychosocial support.
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Methods |
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Study Participants and Procedure
As this was a pilot study, we aimed to recruit patients with a wide range of experiences in order to have a broad base on which to commence the main study. Upon recruitment into the study, patients were from 22 to 50 years old and had received Thoratec (implantable or external; Thoratec Inc, Pleasanton, Calif), Heartmate (Thoratec Inc), and VentrAssist (Ventracor, Chatswood, Australia) devices (see Table
). Four patients were out-patients and 2 were interviewed while they were recovering from heart transplantation after a period with a VAD. The time on VAD support ranged from 16 to 22 weeks. Three relatives of the patients also were interviewed (the wife of patient 1 and mothers of patients 2 and 4).
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Analysis
The transcripts were read several times and annotated in detail. These notes summarized and commented on specific units of narrative. Initial notes were transformed into phrases, then into themes incorporating elements of psychological knowledge that aimed to capture the essence of that piece of text at a higher level of abstraction. With this transfer from a stage of notes to a stage of themes, the beliefs and constructs present in the patients’ narratives were made manifest. With the aid of qualitative analysis software (ATLAS.ti; ATLAS.ti GmbH, Berlin, Germany), the relationship between the themes and the precise words of the participants was always clear.
Once a number of themes had been elucidated, it became apparent that some clustered together naturally; we then created a higher order theme that represented the grouping at a more theoretical level. Rationalization, restructuring, or reordering of the themes and text continued throughout the process of analysis; the extensive use of note-making allowed the interpretative thought processes of the analyst to be transparent. Several members of the study team read the transcriptions, themes, and subthemes and agreed with the final analysis.
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Results |
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Body and Self
A major theme concerned the effect of this experience on the patient’s body and sense of self. Key subthemes were shock, restrictions, scarring, and infection.
Shock. All patients experienced some decline in their physical health before the VAD was fitted and, for some weeks, had had their bodies maintained by machinery with both internal and external elements. The initial illness might have been a crisis event like an acute myocardial infarction, or something slower in onset, but either way the patients’ bodies and lives were changed and altered by the VAD experience.
Because it was so sudden. One day you are perfectly all right and the next day you are waking up with the VAD inside you. (Patient 3)Well, I had my heart attack in April and they fitted [me with] a VAD ... after 2 days. (Patient 5)
Mine’s been quite spread out, you know, to start with, but then obviously it [came] together quite quickly towards the end. (Patient 6)
| "Nothing, nothing would prepare anybody for [insertion of a ventricular assist device]."
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When a patient is fitted with a VAD as part of an emergency procedure, little time is available to prepare family members for the sight of their relative with the machinery in place, and the impact of such a sight can be significant.
You have to get over that initial shock—nothing can prepare you for these VADs, nothing. I mean, I know they are different now—you know the ones that Paula had got were outside ones, [and] you could see the blood pumping around. You could hear it. Nothing, nothing would prepare anybody for that. (Relative 2)And we all went in and saw him and the state of him was like—well, it was just like something out of a horror movie, really.... I can remember not wanting him to see his stomach, and I wanted to pull the sheet over him, but [the surgeon] showed him straightaway and I remember the horror in Frank’s eyes. I’ll never forget it, when he actually saw what was ... but when he had it done, the pumps were quite big like a lump of mechanics just resting on his stomach with all these wires, tubes, and a big machine where all the blood came in and out, and I remember the horror in his eyes. (Relative 3)
| For some patients, the ventricular assist device posed few restrictions.
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All patients commented on the impact of the machine on their bodies (noise, vibration); however, the level of intrusion or adverse effects depended on a number of things such as the type of device, the activities the patient took part in, and the patients’ attitudes. The noise of the machine or the vibrations were often the first thing that patients were aware of after waking up from the operation.
And you know, all I felt was this vibration on my stomach, and I didn’t understand what was going on and everyone was trying to explain it to me.... It kept me awake at night because there was like a swooshing. (Patient 2)I didn’t really feel the VAD, although that first waking up—when you wake up you hear that noise and they said, "Oh, by the way, we’ve put this VAD in." But I found the one I had was very noisy—well, not very noisy—it just melted into the background—other people in the room noticed it, but they got used to it after a bit really. (Patient 5)
Another patient reported no problems at all with the noise himself but said it had upset his wife and that the noise had prevented them from sleeping in the same bed at home.
Restrictions. Once they were in stable condition, the patients were encouraged to carry out many everyday activities and to leave the hospital and return home if possible.
They told us he could do normal things—go out and things—but he’d just have to be more careful and we’d have to take the other machine everywhere we went, just in case, as backup. (Relative 1)
For some, the VAD posed few restrictions.
So having the VAD didn’t have any limitations for me. I could sit out on the balcony, and I am quite a self-sufficient person. (Patient 5, who did not leave the hospital until after receiving his transplant)
For others, there was a more definite sense of physical restriction that was related to the need for battery power.
Could only get out once or twice a week ... because we had to take spare batteries as well. Not something you can get on the bus with. It was difficult because you are limited for time anyway on the batteries. (Patient 3)
Feelings of being restricted also were related to how confident patients or their family members were about the functioning of the machine. If the VAD was large or if the alarms sounded frequently, the patient had reduced confidence and felt more restricted psychologically.
| "You have got to treat [the ventricular assist device] as really a friend ... an extension of yourself ... you can’t alienate it...."
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You know they like you to get out of the hospital, and she came home a couple of days. She spent a night here—one night here, bless her—and the machine did nothing but go wrong. And we had to change it over, which you are taught, but my hands just shook you know because it was just alarming [the machine was making a noise] and we had to put another machine on. And she just never—she didn’t feel—I’m not saying she didn’t feel safe—she felt safe in the hospital. (Relative 2)
Another level of restriction was related to patients’ feelings about their dramatically changed bodies and about having intimate or close contacts with others. The 2 examples that follow show different ways patients experienced this type of restriction.
I felt restricted. I wasn’t allowed to drive and stuff like that ... I was so confined. I wasn’t allowed to explore myself out of the range like ... I was too weak and in too much pain to be into cuddling, [or] even walking. I walked with a crouch to [try to] squeeze [up] a bit of fat—to make the VAD more comfortable. (Patient 1)Try and accept that [the device] is helping you—it’s not going to be a hindrance or against you—it’s for you—it’s part of you—and you have got to treat it as really a friend—you know, an extension of yourself—so that when you walk, it’s really just part of you—you can’t alienate it and say well that’s a nuisance [because] that is—I accepted it as—that is part of me. (Patient 6)
| "I look at myself now in the mirror.... Now I’m covered in scars."
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Finally, it was just physically difficult to do some things with the VADs in place.
It was just difficult to hug, I suppose, with them in your belly. (Patient 4)
Scarring. Patients talked of both their physical and psychological scars from the experience.
This [round one] here [indicates a round deep scar]—oh yes, that’s where the VAD line goes in and that ... I don’t like that one—looks like an appendix. I don’t like showing them. People say, "Oh, let’s look at your scars," and I say, "Yeah, here are my scars." I’m not proud of it like. (Patient 1)People still stare now because of my scars, which I find a bit hard. If I go out and I am just walking ’round the street, and someone just happens to look, that’s it. I get self-conscious. Everyone does look—I mean it’s just ... that’s what’s affected me most, the scarring. I can’t even remember myself without scars. (Patient 2)
I look at myself now in the mirror. Before I didn’t have any scars. Now I’m covered in scars. It doesn’t really bother me. I’ve got a scar [that] comes up to here—it doesn’t bother me. (Patient 3)
| "I think I am emotionally scarred ... I am not 100% right, but I think it is just all in the mind."
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Some patients had psychological scars from the experience. The 2 patients quoted next were young when they had their VADs, and both had the devices placed during emergency procedures.
I don’t know—I think I am emotionally scarred —I am—I am not 100% right, but I think it is just all in the mind. I can’t get round it or over it. I dunno. (Patient 4)Getting easier day-by-day. Especially now that I have started counseling because when I talk even to [my boyfriend] and my mum and my dad, I have to watch what I say, because I know that deep down my mum was quite hurt by it and [my boyfriend] doesn’t like to hear me talk about it, but the fact of the matter is that I have to, and when I go and see the counselor I can tell her how I feel and I don’t have to worry about what she’s thinking of me. (Patient 2)
Infection. Patients understood the importance of keeping the site clean, but after some weeks on VAD support they often experienced signs of infection or some malfunction in the VAD, which reinforced their sense of bodily vulnerability.
It was very important psychologically that it was clean. (Patient 4)What happened was—it got infected—and I went up to the hospital for a routine visit and they said they were going to have to keep me in for a couple of days. (Patient 3)
And he had terrible pains in his stomach and the body must have been reacting against the tubes and everything like that—his body and the infection—he had an infection and it was getting worse and worse and all that week they tried to treat the infection and they couldn’t do it—nothing was working. (Relative 3)
Within the body and self theme, respondents spoke of how their bodies changed during the weeks and months before they got the VAD and during the time they had the VAD, as well as how they had physical and/or psychological scars as a result of the experience.
| "[T]he thought of having a mechanical thing keeping me alive ... I was scared about it."
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Trust
Trust was an important theme for the participants because they all had experienced a time when they had to trust the machinery that was keeping them alive as well as a period after the VAD was taken out when they had to learn to trust a donated heart or their own heart again.
Keeping Me Alive. Patients were aware very soon after their operation that the VAD was keeping them alive, which naturally caused anxiety. If the VAD had been placed as an emergency life-saving procedure, little time was available to prepare the patient or the patient’s family.
I think it was just for the first couple of days, the thought of having a mechanical thing keeping me alive—I was apprehensive about it—I was scared about it. I couldn’t do very much about it because it was virtually right from waking up out from that haze that people explained it straightaway. (Patient 5)
Even in cases in which the patients had plenty of time and information about the VAD and the operation, it was still difficult for them to assimilate the information.
I didn’t know quite what to expect—I mean, they explained that it would be attached in the heart and it would come through my tummy and I’d have a machine that I’d push about—a little trolley.... I’d seen the part that was going to—the metal part that was turning—but I hadn’t seen the actual—in the trolley or what it would look like.... I don’t know, I just took it in my stride. I just woke up and it was there and that was it. But emotionwise, I just thought, this is what is keeping me alive and hopefully it’s going to work, and that was it. (Patient 6)
After recovery from surgery, patients were encouraged to take responsibility for the machinery (responding to alarms, and so on), which was difficult for some patients. It was a challenge for patients to acknowledge that the piece of equipment that was keeping them alive could potentially fail mechanically.
We had to have a spare one, because if that one alarmed, you’d have to pull the plug out and put it into the other [one]. And I found it hard to think. And I just ... "oh, it’s just too much pressure"—if that alarmed, you’d have to change it. To think that that thing that is keeping me alive is alarming.... (Patient 2)
| "Although I was free from the [ventricular assist device], I felt naked."
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Surprisingly, we found that some respondents missed the noise of the machinery after explantation, possibly because they had been accustomed to tangible evidence that a machine was keeping them alive.
It was horrible, but when I had the VADs out, I actually missed the noise. They had to get me a fan that clicked. Because it was a comfort, because for x amount of months that thing was keeping me alive, and then to not have it all of a sudden.... (Patient 2)That was keeping me alive ... and when they took it away from me, it felt—oh, I don’t know—I just didn’t feel right. Because I was so dependent on that [machine] keeping me alive.... It was like a comfort blanket knowing that that was keeping me alive, and when they took it away that was really ... really emotional then. (Patient 1)
Device Failure. The patients knew that they would not survive for long without the VAD, and so they naturally thought about the reliability of the machinery. These ideas influenced their thoughts and concerns about leaving the hospital and about being on the transplant list.
But every time I come home, the thing would alarm—every time. And I thought, oh my God, what if I have a power cut, and Nick, he used to bring me home in the ambulance, and by the next day, I’d be wanting to come home [to the hospital] [’cause] I just didn’t feel safe. (Patient 2)But the only thing was that I was in, in the end, for 12 [or] 13 weeks and about a month before I had it out, things started to happen on the computer ... I started [having] these palpitations ... I did get a little bit alarmed that I wasn’t going to reach for a heart because they said although they’d had no VADs that really let them down, it was the patients’ bodies that let them down, so you do wonder at the back of your mind, although they were very sure.... I felt sometimes they were a little bit anxious in the end and they wanted it out as well as I did, just in case this infection was causing any of this. (Patient 6)
I can imagine that some people would panic when they woke up and found that they had a machine—but mine was very reliable. I did trust them [the VADs] to be fair.... I thought they was like good, to be fair.... (Patient 4)
As is clear from the preceding comments, it is much easier to trust in the machinery if the alarms do not keep sounding and if the device functions reliably. The next comment, from a man who spent years repairing electronic equipment, gave a slightly different perspective and highlights the fact that an understanding of electronics may help the patient develop a more philosophical approach.
I was in electronics anyway, so I knew how it worked. I knew how the pump worked and [how] everything else worked. Spent all my life sorting electronics. If you know electronics, you know they break down. (Patient 3)
Confidence. The training process helps to instill confidence in the machinery.
I mean, in the end, I never had any problems with it—I was trained in both hospitals. We did regular practice—I was trained to take my batteries with me everywhere, so we had backup batteries and that was a sort of comfort—they lasted for 6 hours. I had 12 hours of batteries altogether.... It was very simple and the VAD machine was very simple really, so I felt very at ease with it. What would have happened had I had my first alarm call, we never got to test. (Patient 5)Oh, my daughters come up for the training, yes, and got signed off saying they could do it, and they were really good at putting it together, so my faith was in them. (Patient 6)
Training also gave relatives confidence in their ability to deal with any malfunctions, but it is a huge responsibility.
[Training was] reassuring mostly because the other machine was there, and we knew it was there and it worked, and that [there] was a backup if the VAD didn’t work, and we had a hand pump in there as well; if both machines failed, then we could do it by hand. (Relative 1)Yeah, well, if you had been out and the battery had failed, and you had to put a new one in—I suppose you had to know. I can remember sitting in his room ... and I went wrong and I took them off and I went wrong so I just put them all back on the same way and I can remember him [the transplant coordinator] saying, "Well, that was good—at least you put them all back—you didn’t fluster and panic, you just put them back and then started again." And again it was quite lucky we never had to do it out. (Relative 3)
Confidence plays an important role after the removal of the VAD, when patients must learn to have confidence in their new hearts. For 2 respondents, this transition was very difficult. Patient 1 had no confidence in the new heart and reported missing the VAD.
I was lying in bed and it was like really quiet and I was scared to move away from people. I used to walk down the corridor and there was no ticking and I felt alone and I was scared. I was really scared. I needed someone there 24/7, I felt. That was like a comfort blanket to me at the time. And they’ve taken it away from me, and although I was free from the VAD, I felt naked. I can’t explain it. It felt like ... I was scared and I was crying because I didn’t have my VAD. I know it’s strange.... It was part of me. I [had] had it for about 4 months. It was nice to get rid of it because of the pain and the ticking and whatnot, but once it was gone.... (Patient 1).
Patient 4 did not receive a transplant; the VAD had to be removed when an infection developed, and at that point it became clear that his own heart had recovered enough to function without the VAD. The patient had little confidence in his own heart following the experience, though, and worried about something going wrong with his body again.
Participant: No, I don’t seem to have much trust in my heart any more. Interviewer: And that is specifically because of the VADs?Participant: No, I think the VADs were brilliant. It’s just because it has sort of packed up once, so.... [’Cause] I went through it all before, which is probably the frightening thing about it. I can be told that there is nothing wrong with me, but I still believe there is, which I didn’t then, and then this happened, which just confirmed that there was something wrong with me. (Patient 4)
The 3 subthemes identified within Trust demonstrate how important reliable functioning of the machine is to the patient’s sense of confidence because these machines are keeping them alive.
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Discussion |
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Reestablishing a Sense of Identity
Despite the changes and restrictions on the patient’s body resulting from the surgery, most of the respondents ultimately reestablished a strong sense of their identity after explantation. Manderson,16 reporting on patients’ experiences of stoma surgery, suggests that the challenge is to reestablish a sense of identity separate from the compromised body. The patients interviewed retrospectively here seem to have been able to do that.
A major limitation of the study was its retrospective nature, because the VAD experience was over for the patients in the sample. The experience of transplantation added a confounding factor to their responses. Future studies in this area could be prospective to allow reporting of the experience with the VAD as it is occurring.
| Patients with a ventricular assist device experienced profound disturbance of body and self.
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Trust in the Machines
The findings in this study extend our understanding of patients’ experiences with VADs and show some agreement with results of previous work,9 which also highlighted physical concerns such as the VADs being a constant reminder of the heart and knowing that the machine was a lifeline. Patients in other studies have not always left the hospital, however, and we found that trust in the machinery was important, even more so if the patient was discharged from the safe hospital environment.
Different devices produce different problems, and patients will have different experiences while receiving VAD support. Two patients in this study (patients 2 and 4) had external VADs, and these same patients also found it difficult to adapt after the surgery. The number of subjects in this study was small, so we cannot say whether the external type of machine had a greater impact than the implantable version, or whether the newer, smaller models may have produced fewer issues related to body image. The 2 patients who had the external VADs and had difficulty adjusting to them were also young and were bridged to recovery, not to transplantation, so their overall experience was different from the experiences of the other patients in the group. Their age, the outcome, or other factors may actually have been more important in their psychological recovery process than was the type of machinery used.
Comments from the mothers of the 2 patients who had external VADs (relatives 2 and 3) also suggest that their initial impression of seeing their relative attached to this kind of external machinery was a terrible shock. The manufacturers of the VADs are working to make the devices smaller, quieter, and more reliable, which theoretically will make it easier for patients to return to their homes and possibly to improve their psychological outcomes. At the moment, however, the key issues for body image remain, regardless of the type of VAD. These issues include trust in the machinery, the need for the driveline, and the resulting potential for infection.
Support and Information for Patients and Their Families
Support and information for patients and their relatives can be given beforehand, if time allows, and can certainly be given after the procedure. Before discharge, the patients and a minimum of 2 significant others are provided with comprehensive one-on-one training by the hospital’s transplant coordinators. Training includes what to do in the event of an emergency or if the device’s alarm goes off, how the device works, how to care for the hardware, how to change and charge the device’s batteries, and how to take care of the wound site. Training is tailored for each device and each patient’s familial situation. Patients are supplied with care and guidance booklets provided by the manufacturer of the device. Upon discharge, the transplant coordinator visits with each patient, the patient’s general practitioner, and the local emergency department to provide information about the device and whom to contact in the event of an emergency. The transplant coordinator also informs the patient’s ambulance service. The patient’s electricity board is notified that should the power be cut off, the patient should have immediate resumption of service.
Comprehensive training for surgeons and the medical support team is provided by the manufacturers of each VAD before the new device is introduced for study or service at the hospital. Ongoing training is provided by the hospital, often in conjunction with the manufacturer of the device, through a series of "train the trainer" sessions; the lead staff member from each ward and intensive care unit or discipline (eg, physiotherapy, dieticians) attend, then convey the information to their team. Information booklets containing guidance and standards of care specific to each device are available to staff. VAD study days also are held throughout the year. A library of VAD-related resource information is available to staff. Before a staff member is allowed to look after a patient with a VAD, he or she must have met certain competencies either by attending training sessions or through self-education.
Destination Therapy and Psychological Resources of Supporters
VADs are being used as destination therapy (ie, for long-term support of the heart) in an increasing number of patients.4 This situation involves older patients with a VAD returning to their communities.17 It also involves long-term care by the partner at home. We interviewed 3 relatives and found that this experience was deeply emotional for them, too, not just because their relative was seriously ill, but because of their responsibility for the machinery and the shock of seeing their relative with the machine attached. The comments also served to highlight the profound psychosocial effect that placement of a VAD can have on patients’ relatives, and indicates that this experience is often very different for relatives than for patients. Future work should address the issue of how to prepare patients’ families for this situation, perhaps through the use of photographs.
Careful assessment of family members and the home environment before implantation of a VAD would be beneficial to assess psychosocial support for the patient and, importantly, the psychological resources of the relatives, who may be elderly and frail themselves (see also Bohachick et al18). For some VAD patients who are bridged to transplantation, the wait for a heart may be longer than anticipated, and the same issues of long-term support at home would apply in those cases.
Papworth Hospital NHS Foundation Trust has a structure in place to support families and patients with VADs 24 hours a day, 7 days a week. This support structure includes nurses and doctors from the transplant service who are available to answer questions over the telephone. A transplant fellow is also available to answer questions from patients and their caregivers. If needed, arrangements can be made for patients with concerns to visit the hospital outside their routine outpatient appointments. A VAD on-call consultant surgeon service is also available 24 hours a day, 7 days a week.
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ACKNOWLEDGMENTS |
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FINANCIAL DISCLOSURES
Papworth Hospital research funds were used to fund this pilot study. Steven Tsui is the principal investigator for research studies conducted at Papworth Hospital funded by Thoratec Inc and Ventracor Ltd. He is a member of the scientific advisory board for Ventracor Ltd.
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