From January to July 2023, 39 patients were approached and 28 consented (Fig. 1). One patient withdrew during data collection, leaving 27 patients’ data evaluable. Patients were on average 49 years old, mostly male (n = 16; 59.3%), and non-Hispanic Black (n = 18; 66.7%). Additional characteristics are listed in Table 2. Interviews ranged 23 to 71 min (mean = 49 min). The overarching theme was that LVAD implantation was an impactful experience often leading to reevaluation of patients’ values; these values became instrumental to making health decisions and coping with stressors post-LVAD implantation. Three themes emerged during analysis (Table 3): 1) LVAD implantation prompts deep reflection about life and what is important, 2) patient values are communicated in various circumstances to convey personal goals and priorities to caregivers and clinicians, and 3) patients leverage their values for strength and guidance in navigating life post-LVAD implantation.

Fig. 1

Participant screening, enrollment, and data collection. Note. HIPAA = Health Insurance Portability and Accountability Act; PT = patient

Table 2 Patient characteristicsTable 3 Basic, organizing, and global themesLVAD implantation prompts deep reflection about life and what is important

Patients expressed LVAD implantation had a profound impact on how they thought about life and their personal values. Relationships, health, and life were three values that arose as particularly meaningful. Patients endorsed increased awareness of the fragility of life and a shift or reaffirmation of their lifelong values. LVAD implantation emerged as a transformative life event with implications for patients’ values.

Patients were grateful for a second chance at life to enjoy additional time with loved ones and adopt a healthier lifestyle. Many shared a desire to experience as much as possible with the additional time afforded by their device. Recognizing that each day could be their last, patients expressed profound gratitude for each day:

‘To wake up every morning and see a new day and learn to accept life and be grateful. It means so much to me now where I took it for granted before I got my LVAD. I didn’t think much about waking up. Every day now I wake up and I’m grateful and I’m thankful.’ (PT28, 53-yr-old Black Female)

Two other values patients reported thinking about since receiving their LVAD were ‘health’ and ‘wellness’. Specifically, some patients were motivated to adopt a healthier lifestyle going forward. Many patients described an increased focus on making lifestyle changes to optimize their physical health and overall well-being:

‘It’s changed a big way, because like I said before, I was being careless. I wasn’t taking good care of myself. That’s what led to the LVAD. Wasn’t taking care of yourself, just drinking the beer, wine, smoking. After that, I finally gave it all up since I had my LVAD, so that taught me a great lesson. If I wanna live, I have to sacrifice something.’ (PT2, 69-yr-old Black Male)

While some patients reported certain values, such as ‘relationships’ and ‘health/well-being’, changed by becoming important, several patients reported a shift towards prioritizing relationships with loved ones and a higher power. Specifically, some described the value of ‘work’ becoming less important, whereas ‘family’ gained importance:

‘There are people that I guess, live to work, and then there are those that work to live. I was definitely a live to work person before, and that’s not the case anymore. […] For the longest time my career was very, very important to me, and I would say now my family, and my own well-being is more important and it’s secondary.’ (PT17, 49-yr-old Black Female)

Having gained an increased understanding of the struggles of others, either through their own illness journey or that of other patients, patients described a shift towards being more empathetic:

‘Before, I didn’t really—maybe I took it a little lightly, takin’ that people were having surgeries and different ailments or whatever—disabilities or all these different things, I think [LVAD implantation] just made me a little bit more aware and conscious of their day-to-day struggles.’ (PT20, 44-yr-old Black Male)

Finally, some patients endorsed not experiencing a shift in specific values, instead they reported their values either remained the same or all their values became more important. Several patients shared that LVAD implantation either reaffirmed or reinforced their lifelong values:

‘I would not say that they have changed or been reprioritized. I say they’ve just been strengthened. They’ve just been strengthened. That’s the best way to put it.’ (PT29, 43-yr-old White Male)

Patient values are communicated in various circumstances to convey personal goals and priorities to caregivers and clinicians

Patients found values discussions offered a means to convey their personal goals and priorities in various contexts. Their values arose in both broad and focused contexts, including casual conversations with caregivers, small talk with their healthcare team, and in the context of specific health decisions.

Values often arose during broad, informal conversations. Many patients described their values emerging organically during casual, day-to-day discussions with their caregiver:

‘To me it’s normal, it’s just normal conversation. We talk about life things all the time, and what we consider to be values, morals, ethics, honor […] It’s just part of our, like I said, day-to-day conversation.’ (PT17, 49-yr-old Black Female)

Similarly, values discussions occurred in casual exchanges and small talk with the healthcare team. Oftentimes, patients endorsing such discussions described having a close relationship with the LVAD team, particularly the LVAD coordinators. During these conversations, patients and team members often exchanged updates about their families or hobbies:

‘We talk about family, we talk about like sports, we talk about day to day. We do talk about the appointment of course, but there are other things, because they are an extended part of me, because I have to talk to them and see them so often, so I’m like, I just don’t want it to be business, business, business, business. I’m like, okay, well, how are you guys? Well, how’s your family? We just know so much about each other. Like I said, I’m really big on faith and family and friends, so they are in it right there, because they are an extended part of my family and my friends.’ (PT8, 40-yr-old Black Female)

Patient values also arose during focused discussions. When faced with a health decision, such as LVAD transplant or heart transplant, patients shared their values with their caregiver to rationalize a particular decision option by conveying their perspective or stance:

‘I told her back when we first got together I was going to do everything I could to make her happy—and when the doctor came in and told us, “This is it, your heart’s wore out,” […] I didn’t know what it was gonna cost, and I said, “It don’t matter, we’ll sell everything to pay for it because none of this matters if I’m not here to take care of you and the kids and everything.“’ (PT25, 72-yr-old White Male)

Similarly, patients shared their values with the healthcare team to convey their goals and priorities—that is, who (e.g., family) or what (e.g., getting a heart transplant) is most important to them:

‘The only thing I feel like I’ve really talked to my healthcare team about is my family. They allowed rules to be bent a little bit so that I could see my kids before and after surgeries. […] That was a wonderful thing, to say the least, because if I hadn’t woken up from the LVAD surgery, I would’ve at least gotten to say bye to my kids and they would’ve gotten to say bye to me.’ (PT29, 43-yr-old White Male)

Patients leverage their values for strength and guidance in navigating life post-LVAD implantation

Patient values acted as both strengthening and guiding forces in navigating life following LVAD implantation. Patients pursued decision options and coping strategies aligned with their values. While some became frustrated when pursuit of their values was not possible, others’ appreciation of life overshadowed the challenges and limitations that accompanied the LVAD.

Patients overwhelmingly discussed prioritizing decision options aligned with two values: ‘health’ and ‘family’. Patients adjusted their lifestyle to maximize their health and well-being and minimize potential health risks. For example, some limited their travel due to fear of health complications while away from their healthcare team. Others made lifestyle changes, such as giving up previously enjoyed hobbies (e.g., swimming, fishing) due to a risk of dislodging or damaging their device, or modified their diet:

‘I think about the consequences I guess, as it relates to health. I know that there are certain things that I cannot have, that’s about part of having the LVAD. For example, like greens and salads, things that I really like, I have to eat that in very, very mild due to the vitamin K […] it makes me do what I’m supposed to do with respect to that.’ (PT17, 49-yr-old Black Female)

Decisions often involved weighing ‘health’ against other values, such as ‘pleasure’ (e.g., consuming unhealthy foods/beverages) or ‘work’. Adhering to dietary recommendations and avoiding overexertion were two particularly challenging restrictions. Avoidance of stress was another manifestation of patients acting on their ‘health’ value. Recognizing that stress is detrimental to one’s health/well-being, many patients engaged in enjoyable activities as an outlet or distraction from stress:

‘I don’t have stress. I try to stay away from it. I’m just really relaxed. I get a book or something, get in front of the TV. I love sports. I really relax and just watching sports.’ (PT2, 69-yr-old Black Male)

Family was described as impacting health decisions in two ways. First, many patients included family members when making health decisions, particularly the initial placement of the LVAD. Some patients made decisions together with their caregiver, whereas others received input from several family members. Oftentimes, patients considered the values of other individuals, typically their caregiver. Second, several patients considered the impact of decisions on their family. Specifically, patients strived to make decisions that promoted their own health/well-being, so they could stay alive for their family—especially their children:

‘Ultimately, I wanna be here for my family […] I just had a baby in February, and she’s not even two months old yet. I’m like, “I gotta try to extend my life as long as possible to be a part of her life so that I can help mold this human bein’ I helped create.” I just feel like I gotta take the right steps to be a positive impact on their lives, as well as people in my family that’ve been impacts on my life.’ (PT20, 44-yr-old Black Male)

For many patients, faith/spirituality played an integral role in how they coped with the stress of receiving their LVAD. Several patients shared they had thought a lot about their faith and relationship with a higher power. Spiritual practices, such as attending church, participating in services, and engaging in prayer, offered strength and comfort:

‘I’ve been doing what the doctors tell me to do, but I’ve had many people all over—we have lots of friends scattered all over the southeast. Most of them go to church, and they’ve all had their churches pray. They’ve been praying for me. I attribute those prayers and God listening and granting those prayers to one of the major reasons why I was able to heal.’ (PT29, 43-yr-old White Male)

Relationships was another key value leveraged for strength and guidance. Patients expressed a strong sense of support from their caregivers and felt particularly reassured when their values, underlying a particular decision option, aligned with those of their caregiver. In addition to caregiver support, patients often discussed leveraging meaningful relationships with family members, friends, and the LVAD team. Family was a particularly impactful source of strength. Patients often talked about their family—especially their children—as a driving force behind their will to live and persist in overcoming difficulties:

‘I say it’s like the three Fs, my faith, my family, my friends. When we speak of values it’s like, I guess you can say like what I place on myself with those things, because those were the things that helped me through, and that continues to help me […] We joke about it now, but like my mom, she was saying how I would fight myself out of the anesthesia […] I wanted to fight for my life, because I have kids, and I’m like, I have to be here for them. (PT8, 40-yr-old Black Female)

Besides relationships, patients pursued a range of enjoyable activities and hobbies when faced with frustrating or stressful situations (e.g., individual, group, indoor, outdoor). Activities were used as an escape or distraction from stress, or an outlet for managing stress. However, some patients expressed frustration at their inability to engage in activities since their LVAD was implanted, including a previously held job, household tasks, or hobbies. Oftentimes, activities were linked to a family role (e.g., breadwinner, homemaker) or a previous outlet for stress or way of connecting with others:

‘I used to be an outdoorsman, and knowin’ that I can’t get on my kayak and go down a white water river, and go down there with my buddies, them buddies, a different type of buddies, it gets me upset, but I don’t think about it. I try not to anyways.’ (PT7, 45-yr-old White Male)

Several patients expressed a longing for restored function and abilities. Often, these patients spoke about feeling restricted by the LVAD and wished for a heart transplant (or recovery), so they could engage in previously held family roles or hobbies. However, some patients discussed how their appreciation for life overshadowed the difficulties:

‘Being alive and breathing with family members, it outweighs everything. Whether rich or poor, or sick or healthy, to be together, that’s very important.’ (PT10, 42-yr-old Black Male)