Theory of Pivoting Uncertainties: Advance Care Planning Among Individuals Living With Mechanical Circulatory Support : Journal of Cardiovascular Nursing

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Theory of Pivoting Uncertainties

Advance Care Planning Among Individuals Living With Mechanical Circulatory Support

Dzou, Tiffany PhD, RN, PHN, PCCN; Eastwood, Jo-Ann PhD, RN, CNS, ACNP-BC; Doering, Lynn PhD, RN; Pavlish, Carol PhD, RN; Pieters, Huibrie PhD, DPhil, RN

Author Information
The Journal of Cardiovascular Nursing ():10.1097/JCN.0000000000000960, December 23, 2022. | DOI: 10.1097/JCN.0000000000000960

Abstract

Mechanical circulatory support (MCS) is a medical device used to manage end-stage heart failure when medical and surgical interventions are no longer effective.1 The use of MCS is categorized according to device type and treatment goals. Ventricular assistive devices and total artificial hearts are the 2 main types of MCS that can be used by individuals outside the hospital setting. The use of these MCS devices is further classified into 3 distinct therapy goals: bridge to candidacy for a heart transplant, bridge to transplant, and destination therapy.2 Therapy goals evolve over time according to changes in patients' health. Approximately 40% of patients with MCS reported changes in their goals within 2 years of implantation.3

From 2010 to 2019, 27 298 adult patients in the United States were implanted with durable MCS devices.4 Innovations in MCS technology have led to reduced mortality with bridge-to-transplant patients' 1-year survival at 86.8% and 5-year survival reaching 52.7%.4 However, the MCS trajectory is complex with 89.2% of patients experiencing adverse events such as gastrointestinal bleeding, strokes, systemic infections, right heart failure, and end-organ failure.5,6

Advance care planning (ACP) is defined as a process that supports adults in various stages of health to discern and communicate personal values, life goals, and preferences for future medical care.7 Furthermore, ACP is recognized as an ongoing process that revisits an individual's wishes over time and especially during times of transition.7 For people living with MCS, ongoing ACP is needed to address the complex postimplantation trajectory and evolving therapy goals. However, the scant literature surrounding ACP among patients living with MCS has focused on the perspectives of clinicians8 and informal caregivers,9 but not on the patients' perspectives.

Specific to address the complex trajectory of living with an MCS device, the Centers of Medicare & Medicaid Services along with the Joint Commission required the integration of palliative care specialists in 2013.10,11 However, ACP discussions regarding the role of the MCS device over the heart disease trajectory remained limited.12 Guidelines on conversations surrounding the deactivation of cardiac devices, including the termination of MCS devices and anticipated death, remained minimal.13 Despite national recommendations for enhanced ACP, bereaved MCS caregivers reported that their loved ones experienced fragmented palliative and hospice care.9 Another clinical area of concern is insufficient palliative care training and resources for MCS clinicians.14 Thus, the purpose of the current study was to describe how individuals' experiences of the MCS trajectory informed decision making about ACP.

Methods

To explore participants' personal experiences and understand actions associated with these experiences, constructivist grounded theory (CGT) guided all aspects of this study.15 Constructivist grounded theory is a research methodology that is focused on generating new theories through inductive analysis of the data gathered from participants rather than from preexisting theoretical frameworks.

The constructivist approach recognizes that reality changes and is continuously created through interactions between individuals and with the surrounding environment.16 In addition, CGT is underpinned by symbolic interactionism, which regards the human being as a dynamic organism interacting with self and others, constantly interpreting and reacting to environments based on perspectives developed through social interactions.17 Hence, CGT diverges from the traditional approach to grounded theory in its acknowledgment of the researcher's interaction with the data.15 This reflexive approach is beneficial for examining the processes in ACP decision making, while minimizing the effects of bias in the data and analysis.15

Recruitment

After approval from the institutional review board, recruitment occurred with flyers in outpatient MCS clinics of 2 large urban medical centers. The first author screened for eligibility at clinics or by phone according to the inclusion criteria: 18 years or older, English speaking, and currently implanted with an MCS device. Individuals who were hospitalized or severely cognitively impaired, assessed with the Telephone Mini-Mental State Examination,18 were excluded to prevent potential harm from the emotional content of the interview. Of the 29 patients who expressed interest, 24 met eligibility and provided informed consent (individuals not interviewed: severely cognitively impaired, n = 1; hospitalized at the time of interview, n = 2; received heart transplant, n = 1; or died, n = 1).

Data Collection

Data were collected with intensive interviews, and sample characteristics were garnered with questionnaires. Interviews were conducted by the first author in person (n = 5) or by phone (n = 21). An interview guide served to stimulate focused discussions around experiences of living with MCS and conversations about ACP. Second interviews were conducted with 2 participants, to gain clarity into potential emerging themes from their initial interviews, for a total of 26 interviews with an average length of 52.7 minutes. Examples of interview questions can be found in Table 1. Upon completion of the interview, participants received a $50 gift card to compensate for their time and emotional availability. After 5 interviews, homogeneity of the sample became evident; specifically, newly implanted bridge to transplant participants did not have longevity or complications with the device. Hence, theoretical sampling was conducted to illuminate and define the properties and boundaries15 of ACP decision making with MCS complications. Destination therapy patients and patients who had the device greater than 1 year were targeted for recruitment to explore individuals' varied experiences with MCS.

TABLE 1 - Examples of Interview Questions and Potential Follow-up Prompts
Subject Question Follow-up
Experiences of living with MCS How has living with an MCS device influenced your life? Could you tell me how this process has lived up to your expectations?
On the other hand, have there been ways that living with a device has not lived up to your expectations?
ACP sources of information From whom did you first hear about advance care planning? Some patients have described preferring to talk about advance care planning with certain clinicians over others. What has your experience been like?
Purpose of ACP conversations For you, what is important about advance care planning conversations? If you could use a picture to describe the role of advance care planning in your experience with the device, what would it be?
Experiences with clinicians Can you think of an example of a conversation with your clinician that helped you get used to living with the device? This example can apply to everyday life. Thank you for that example. Now, can you tell me how the guidance from this conversation worked out for you over time?
Shared decision making around ACP When you think about your future with the MCS, who should be included in the conversations around advance care planning? How is this individual(s) important to your process of making decisions?
Abbreviations: ACP, advance care planning; MCS, mechanical circulatory support.

Data Analysis

The first and last authors independently conducted 3 rounds of systematic coding.15,19 Details of steps that enhanced scientific rigor are summarized in Table 2. Constant comparison was used to ensure that newly coded data were aligned with previously identified codes and to identify potential areas that still needed to be filled out.15,19 Concurrent with coding, the researchers used reflexive memos and diagrams to raise the level of abstraction.15,19 Data saturation was met when the repetition of codes was noted. Atlas.ti and Microsoft Word software were used to organize the data and analysis.24

TABLE 2 - Processes to Establish Scientific Rigor
Criterion Components in This Study Processes Followed in the Current Study
Credibility Triangulation From the start of data collection, 2 authors (T.D. and H.P.) independently read and coded all the transcripts. Codes and emerging themes generated by the first author, a clinical expert in MCS, and the last author, with expertise in qualitative research focused on treatment decision making, were discussed in regular meetings. Consensus meetings were held routinely to arbitrate differences in coding.
Peer debriefing Ongoing communication from the planning phase of the study to the end data analysis occurred with coauthors and clinical experts in the field of healthcare decision making, palliative care, and cardiology.
Reflexivity Throughout the research process, self-reflective memos exploring researchers' perceptions were written to explore and limit potential bias on emerging themes.
Building trust To enhance trust and minimize power differentials, interviews were conducted outside the clinical setting. The interviewer paid close attention to participants' tone of voice and overall body language to prevent causing discomfort to the participant. Because of the sensitive nature of the topic, the interviewer carefully listened to the narratives and used words consistent with participants' language and vocabulary to ask questions as the interview progressed.
Transferability Thick descriptions Detailed descriptions were written about the sample and the context and timing of data collection.
Accurate transcriptions The interviews were digitally recorded and transcribed verbatim by a professional transcription service (http://www.rev.com). The first author checked transcripts for accuracy and deidentified the content to protect anonymity.
Purposive sampling Theoretical sampling was used to specifically recruit destination therapy patients.
Saturation Successive interviews were focused on processes that needed to be further understood to fill out the data set until theoretical saturation was reached.
Dependability The interviewer (T.D.) received extensive training in interviewing to collect data for a constructivist grounded theory study. Two authors (T.D. and H.P.) independently performed 3 rounds of coding: initial, focused, and theoretical. This process raised the level of abstraction and organized the data into categories, subcategories, and properties.
Confirmability Audit trail Throughout the study, the first author (T.D.) kept an audit trail of field notes, voice recordings, transcripts, and analytic diagrams.
Usefulness Participants' experiences with MCS were used to elucidate the processes in ACP decision making. In the spirit of shared decision making, these personal perspectives are useful in offering direct guidance to clinicians on how to engage patients in discourse about ACP among the rapidly growing population of people living with these supportive devices.
Sources: Charmaz,15 Lincoln and Guba,20 Tong et al,21 Levitt et al,22 and Erlandson et al.23

Results

Sample Characteristics

The men (n = 16) and women (n = 8) in the study were an average of 60.6 years old. Participants self-identified as White (n = 12), African American (n = 7), Hispanic (n = 4), and Asian (n = 1). The duration of the implant varied between 3 and 112 months with an average of 29.8 months. Participants' self-reported therapy goal was identified as a bridge to transplant (n = 14), destination therapy (n = 8), or uncertain pending the resolution of current comorbidities (n = 2). Most participants recalled completing advance directives (n = 19) (see Table 3 for detailed characteristics).

TABLE 3 - Characteristics of the Mechanical Circulatory Support Sample (N = 24)
Sociodemographic Characteristics n (%) Clinical Characteristics n (%)
Age, mean ± SD (range), y 60.6 ± 16.5 (24–80) MCS device, mean ± SD (range), mo 29.8 ± 26.7 (3–112)
 18–24 2 (8)  <6 mo 2 (8)
 35–44 3 (13)  1 y 9 (38)
 45–54 2 (8)  2–3 y 9 (38)
 55–64 2 (8)  4+ y 4 (16)
 65–74 10 (42) Type of MCS device
 75+ 5 (21)  Heartmate II 3 (13)
Sex  Heartmate III 8 (33)
 Male 16 (67)  Heartware 11 (46)
 Female 8 (33)  Uncertain 2 (8)
Ethnicity MCS therapy goal
 White 12 (50)  Destination therapy 8 (34)
 African American 7 (29)  Bridge to transplant 14 (58)
 Hispanic 4 (17)  Other (transplant pending clearance) 2 (8)
 Asian 1 (4) Future planning
Marital status  Completed advance care directives 19 (79)
 Single 4 (17)  Filled out a POLST form 3 (13)
 Married 18 (75)  Healthcare proxy 17 (71)
 Divorced 1 (4)  Living will 9 (38)
 Widowed 1 (4) Complications from MCS device
Religion  Bleeding: requiring hospitalization 6 (25)
 Christian 16 (67)  Nontherapeutic anticoagulation 20 (83)
 Catholic 3 (13)  Infection (driveline, sternal wound) 3 (13)
 Hindu 1 (4)  Issues with device charging 3 (13)
 Jewish 1 (4)  Pump thrombus 1 (4)
 Muslim 1 (4)  Stroke 1 (4)
 None 2 (8) Readmissions since device implantation
Education completed  Never 3 (12)
 Middle school 2 (8)  1–3 times 12 (50)
 High school graduate/GED 1 (4)  4+ times 9 (38)
 Some college 11 (46) Days readmitted to the hospital
 Four-year college graduate 5 (21)  <7 d 9 (38)
 More than 4-y college degree 5 (21)  1 wk 6 (25)
 2 wk 3 (12)
 >1 mo 6 (25)
Abbreviations: MCS, mechanical circulatory support; POLST, Physician orders for life-sustaining treatment.

The Theory of Pivoting Uncertainties in Decision Making About Advance Care Planning

The complex processes in ACP decision making across the MCS trajectory were organized into a situation-specific theory that reflects the specific MCS phenomenon and connects clinical practice to research limited to this population.25 The theory of pivoting uncertainties (see Figure) was composed of 3 categories, which were impediments to discussing ACP, uncertainties in MCS outcomes, and promoters of ACP. In the Figure 1, the upward-pointing arrow symbolized increased ACP decision making over time. Subsequently, decision making about ACP was depicted as an overarching process that pivoted around uncertainties of living with MCS as individuals moved bidirectionally, up and down the figure, toward ACP or away into silent expectations. Categories were further represented by dynamic external and internal processes. External processes embodied the shift from waiting for information to actively participating in ACP. Internal processes promoted the shift from innate trust to questioning health outcomes and the impact on the self and family (see Table, Supplemental Digital Content 1, https://links.lww.com/JCN/A185, for detailed in-vivo quotes).

F1
FIGURE:
The process of decision-making about advance care planning (ACP) pivots around uncertainties in the mechanical circulatory support (MCS) trajectory. Individuals' ACP decisions are fluid and iterative, moving up and down the figure over time.

Category 1: Impediments to Discussing Advance Care Planning

Impediments to discuss ACP revolved around the interaction of expectations between perceptions of external sources of care and the internal processes of framing the trajectory positively. Aligning the self with the “best care” was an external process of receiving treatment at the “best” hospitals from the “best doctors and nurses.” In contrast, maintaining a positive outlook was an internal process used to make sense of discrepancies between silent expectations that were not explicitly shared with clinicians.

Aligning self with the best care: “I got the best, so where do I go from here?” Being at the best hospitals and receiving excellent care from clinicians were spontaneously and frequently voiced. Early in the trajectory, individuals believed that receiving the best care would lead to transplant, but when this did not actualize, the belief in receiving the best care barred discussion about negative MCS outcomes. As an example, when asked about how clinicians could have more meaningful ACP with patients, a participant who had the device for 4 years stated, “I got the best, so where do I go from here?”

Perceptions of receiving the best care commingled with a deep sense of trust toward MCS clinicians and rendered a passive approach to discussions. Many quietly expected the MCS team to initiate ACP, as 1 individual described, “I just kind of wait for them (clinicians) to say, ‘This could be an issue,’ or ‘You might want to think about that…I trust their judgment.’”

Another impediment was that participants placed themselves in the shoes of their valued clinicians and refrained from asking questions. Individuals occasionally recalled situations where clinicians shared inconsistent information about their trajectory. One person rationalized the discrepant information as he explained, “I understand they're walking that tightrope also, whereas they want you to have hope. They want to give you hope. They don't want to give you expectations that may not come out.”

Maintaining a positive outlook: “I'm going to try to stay positive, always.” Framing the MCS trajectory positively was highly valued by participants. When asked about the experience of waiting for a heart transplant, 1 individual said, “I'm going to try to stay positive, always.” Staying optimistic despite MCS-related complications, such as bleeding (n = 6), infections (n = 3), and issues with powering the device (n = 3), minimized the adverse effects of living with MCS. Analytic memos reflected what clinicians perceived as medical complications that were often considered by participants as mere “setbacks.” Thus, maintaining a positive outlook by focusing on heart transplantation was an internal process that inadvertently positioned ACP decision making negatively.

Difficult challenges, such as readmissions for infections or recurrent bleeding, were commonly recalled. However, we were surprised to find that the participants did not consider these adverse events as complications. Instead, these “setbacks” were compartmentalized as events separate from complications of living with MCS. Consequently, rather than engaging in ACP when faced with MCS complications, participants focused on the positive outcomes. One individual readmitted for more than a month in the first year of implant shared, “But things happen and if it has to be from one thing to another, well we've got to keep moving on until we get to the right part of life.” Thus, downplaying difficult experiences created an impediment to ACP because participants did not view these changes as sufficiently important to discuss with clinicians.

Accepting change was exemplified as participants detailed how they tolerated the limitations imposed by living with MCS. Despite improvements in heart failure symptoms after MCS implantation, participants realized that clinicians, family, and friends still considered them “very sick.” Individuals in this study accepted the changes of living with MCS, as evidenced by an individual who reflected, “Well, that's just the street I live on. That's the new normal for me.” Accepting the permanency of living as a chronically sick individual became an impediment as this acknowledgment precluded participants from delving into ACP.

Category 2: Uncertainties in Mechanical Circulatory Support Outcomes

The uncertainty and doubts about MCS outcomes experienced by participants who had lived with the device for an extended time were crucial for decision making around ACP. The perceptions within this category pivoted in a dynamic manner to promote or impede ACP. Events that triggered uncertainty were complications from the device along with frequent readmissions of 4 times or more occurrences. Participants who had waited a long time for a transplant were especially likely to voice doubts about whether a transplant was going to take place, as an individual reflected, “They (MCS team) ain't giving me no heart.” Within the backdrop of varying MCS outcomes, participants' stories elucidated 2 subcategories: “living in limbo” and “leaning on spirituality.”

Living in limbo: “I'm still waiting.” The unpredictable wait time for a heart transplant was associated with doubt about the future. Most participants (n = 17) recalled receiving information from clinicians, before surgical consent or early in their trajectory if the device was placed emergently, that the device would be used as a bridge to transplant. The resultant focus on transplantation contributed to expectations that the transition to transplant surgery would be quick and smooth. Individuals who self-identified as waiting longer than anticipated for a transplant shared sentiments of feeling “stuck” or being in “limbo.”

Individuals whose goal remained as a bridge to transplant often felt “consumed” by the drawn-out waiting time. The protracted anticipation for transplant offers also impaired the quality of everyday life, as 1 individual shared, “You can be consumed with that aspect to the point to where it interferes with your daily life routine.” Reflecting on the prolonged wait, many shared narratives of apprehension about their likelihood to receive a transplant.

A finer aspect within being consumed by the transplant was an increasing concern with the durability of the MCS device. After experiencing pressure from the prolonged wait, participants became concerned about the durability of the device and asked ACP-related questions. Having waited 9 years for a transplant, 1 individual asked a clinician, “Has anybody passed away with the machine by waiting?” Overall, descriptions about being consumed by waiting for the transplant and questioning the longevity of the device promoted ACP.

Albeit less common, changes in MCS goals from a bridge to transplant to destination therapy were evident in participants with prolonged trajectories. Individuals who switched to destination therapy because of complications shared feeling “a little discouraged” and “disappointed” at their ineligibility for a transplant. However, while disheartened, the change in goal resulted in direct ACP with clinicians and acceptance of their MCS outcomes. After 2 years of waiting, 1 individual received news that he was ineligible for transplant, “The fact that I'm a big guy and my age being what it is, they (clinicians) told me I'd probably never get a transplant. So, they took me off the transplant list.” After the new goal of destination therapy was accepted, participants often realigned themselves with the best care and pivoted away from additional ACP.

Leaning on spirituality: “The wish of whatever powers it be.” Relying on spirituality decreased the need for ACP. Most individuals self-identified as religious or spiritual (n = 21). Individuals who identified as being spiritual, but not religious, described gaining acceptance for their uncertain MCS outcomes by believing in the will of a higher being. Reflecting on multiple readmissions for recurrent bleeding, 1 participant shared, “That is the wish of whatever powers it be. So, let us accept it (complications).” Thus, leaning on spirituality helped participants make sense of the prolonged trajectories and the uncertainties in their future.

Conversely, the self-acknowledged absence of religious faith was observed to motivate decision making around ACP. Common among 3 participants who did not self-identify as spiritual were the acknowledgments of their mortality and the willingness to engage in ACP with their families and clinicians. A self-reported, nonreligious individual recounted ACP decision making with his wife, sharing, “I don't think my life expectancy would be significantly greater and the impact of my daily life would not be improved enough that I would go through the experience again.”

Category 3: Promoters of Advance Care Planning

Over time, the uncertainties of the MCS trajectory played a central role in pivoting between enhancing or reducing ACP. Experiences that contributed to increased ACP were conceptually organized as promoters. These promoters were composed of the external process “distrusting clinicians” and the internal process of “managing incongruent expectations.”

Distrusting Clinicians: “Don't think they (doctor or nurse) just going to drop a load on you.” Distrusting clinicians was associated with the prolonged wait for a transplant as well as expectations of what life with MCS ought to be. The pivotal experiences of uncertainty helped participants identify areas of dissatisfaction in their MCS care. This sense of distrust diverged from being aligned with the best care and pivoted individuals into proactively questioning clinicians about their future trajectory. Reflecting on the discrepant information received about the timeline for transplant, 1 participant pondered whether the clinicians had a hidden agenda to change the goal of MCS to destination therapy:

No matter what they (clinicians) tell me, I'm going to have questions. I'm going to have suspicions. Instead of focusing on what they did tell me, I would say, “You didn't tell me this (transplant will take more than three years),” and I'll focus on the things that I may be picking up (my goal might become destination) that I don't think they told me.

Feeling distrust toward clinicians also motivated participants to ask difficult questions and advocate for themselves. A young female participant who experienced distrust after being “passed up” by clinicians shared the following as advice for future MCS patients:

You have to write down your questions, you have to ask your questions, you have to try to research your own stuff because it's not just going to all be handed to you, that's for sure. Don't think they (doctor or nurse) just going to drop a load on you and they don't say, “Hey, this is what's going to go on.”

Overall, distrust prompted participants to ask clinicians difficult questions about their MCS trajectories, enhanced self-advocacy, and ACP decision making.

Managing Incongruent Expectations: “I probably envisioned doing things more normally than I am able to.” Over time, participants were faced with managing incongruencies between their initial expectations at MCS implantation and the realities of living with the device. After experiencing uncertainties in their MCS outcomes, individuals reflected on their initial, postoperative anticipations of living with a device. Expectations that were incongruent with lived experiences caused participants to form internal questions, which encouraged ACP with clinicians and caregivers. After being readmitted to the hospital for the third time, 1 individual pondered to himself, “This machine, I don't know how long it will remain, how many years and what if stability stops?” Furthermore, the process of weighing initial expectations against the current reality of living was manifested in “embedded perceptions” and “perceptions of supportive others' experiences.”

Embedded perceptions were personal, silent expectations that were not voiced until incongruencies emerged. Early in the trajectory, participants experienced fewer complications and were less cognizant of potential outcomes that would later diverge from their expectations. Embedded perceptions that were different from participants' expectations were expressed through a range of emotions. Hopelessness was a common response to the limitations imposed by living with MCS. A participant who, on realizing that she could no longer travel on cruises because of the lack of access to clinicians, said that she had “nothing to look forward to.” Individuals who had anticipated a return to their preimplant lifestyle were especially frustrated by the challenges they encountered. Expressing anger at the thought of living the rest of his life with MCS, a participant said, “Even though I had accepted it (MCS), but sometimes I'm angry why I wish that it was not there.”

Individuals whose designated goal was changed to destination therapy (n = 8) were more aware that they would live with the device until they died. The knowledge that MCS therapy was an intimate life-giving connection and that its termination was equivalent to death was acknowledged by 1 individual who said, “Your (MCS device) sunset is my sunset.” The acknowledgment of one's own mortality prompted deep thought about ACP. One of the destination therapy participants reflected on the discussion with a non-MCS specialist about anticipating poor outcomes when he was hospitalized for a recurrent infection. Internally pondering this communication, the participant shared,

I've got all kinds of artificial means attached to me that are addressing both the quality and quantity of my life. So, say I don't want to be kept alive by artificial means, I already am…. So, you have to dig a little deeper about what that means.

Although participants did not explicitly describe their preimplant expectations of how MCS would affect their families, narratives from later trajectories expressed a deep concern for burdening caregivers. Internal reflections and questions about the impact of MCS on family members promoted opportunities for ACP. A participant who was concerned about becoming ineligible for a transplant questioned, “Is it really worth it all…Do I want to keep putting my family through this?”

Frustrated with the uncertainties in their trajectory, a few individuals were motivated to voice personal preferences and discuss ACP with family caregivers. Reflecting on the prolonged wait and potential complications, such as kidney failure, 1 participant shared with his wife, “I don't want to walk around with a piss bag for the rest of my life…I don't want that. I'd rather die than that.” However, although the recognition of incongruencies between initial expectations and embedded perceptions promoted ACP decision making with some caregivers, none of these participants expressed their feelings and concerns to MCS clinicians.

Decision Making About Advance Care Planning

Pivoting around uncertainties, decision making about ACP was an ongoing bidirectional process that overarched the MCS trajectory. As ACP was an iterative process, individuals moved up and down the diagram in terms of their ACP decisions over time. The fluidity of impediments and promoters of ACP was juxtaposed with individuals' relation to time. Earlier in the trajectory, despite copious interactions with clinicians, participants' sensitivity to clinicians' time constraints impeded ACP. In contrast, individuals who were later in their trajectory developed a growing awareness of their mortality that enhanced proactive approaches to ACP. Reflections on uncertainties arising from the longevity of the device prompted actively questioning clinicians about the future with MCS. Recalling ACP decision making from a previous hospital readmission, an older individual processed the sobering news that he would not survive if he was placed on a ventilator one more time, by saying:

I want to really know what you (clinicians) think. I may not listen to what you think, but I want to know. Then I'll make my own judgment...It was a gut punch…That was eye-opening. And maybe a good view into my own mortality that I needed to confront.

Although less common, such a proactive stance of directly asking clinicians questions promoted ACP.

Discussion

The theory of pivoting uncertainties is a synthesis of 24 personal accounts on how experiences with the MCS trajectory informed ACP decision making. Analysis of these subjective experiences revealed that ACP decisional processes were complex, pivoting around multifarious uncertainties. These processes were systematically organized into 3 categories: impediments, uncertainties, and promoters. For this discussion, we will situate the theory in relation to Mishel's26,27 uncertainty in illness theory, outline findings of each category to connect them with current research, and propose how this theory can bridge research-practice gaps.

Although our methodology of CGT precluded the incorporation of an initial framework in the research design, our resulting situation-specific theory reflected similarities to concepts presented in the uncertainty in illness theory26 and the reconceptualized uncertainty in illness theory.27 Mishel's middle-range theory emphasized uncertainty in illness as a source of a change that moved individuals from an initial state through a bifurcating point toward a new state.27 An essential difference between the theory of pivoting uncertainties and the uncertainty in illness theory is found in the targeted clinical implications for ACP decision making among the population living with MCS in the current study. However, the theories also share similarities in the processes of shifting individuals living with chronic uncertainty from an initial state of limited ACP to a higher level of ACP decision making. Thus, the current situation-specific theory of pivoting uncertainties explains MCS individuals' patterned responses toward uncertainties in their trajectories and provides clinical implications for decision making around ACP.

The main impediment to ACP encountered by many individuals living with MCS was described as receiving the best healthcare. Despite routine visits in MCS clinics, the experience of close working relationships between patients and clinicians did not bolster ACP. Instead, ACP was conducted by palliative care specialists during preimplantation counseling, which was observed by the first author. In previous studies, the integration of palliative services increased the preimplant consultations from 35% to 71%.28 Palliative clinicians were also found to be instrumental in engaging patients in identifying personally unacceptable conditions for living with MCS.29 However, when the current sample was asked about preimplant ACP, only 1 participant was able to recall ACP. This finding presents a discrepancy between increased palliative services and patients' perceived gap in ACP. Another novel finding from our study was that patients preferred to engage in ACP with their MCS clinicians. Furthermore, we found that participants wanted opportunities for ACP to be revisited across their trajectories, such as when complications arose and transplant was delayed. As nurses provide care for individuals living with MCS across the trajectory, in both clinics and inpatient settings, the current research points to an unexplored research opportunity. Whereas authors of previous studies have explored scripted nurse visits for preimplantation consultation,30 authors of future research can examine mobilizing MCS-trained nurses to engage patients and families in ongoing ACP. Overall, it is important for MCS clinicians to proactively engage patients in ACP as an iterative process.

The main uncertainty among participants arose from the growing awareness that, with time, the hope for a heart transplant dwindled. These uncertainties pivoted participants from passive to cautious, proactive communication about ACP. Similar to previous findings, participants described conversations about disease progression, end of life, and death as sensitive and challenging for all parties involved.31,32 In addition, the current sample noted the increasing importance of these sensitive conversations as the wait for transplant became prolonged. With time, participants became increasingly skeptical about the likelihood of transplantation. Some began questioning clinicians about the eventual outcome of their MCS trajectory. However, more direct communication with clinicians did not equally translate into ACP with family members. Previous findings emphasized the active role of family members in decision making about MCS implantation,33 not unlike cancer patients and their caregivers who incrementally engage in ACP with disease progression.34 However, contrary to results from these previous studies, when faced with growing uncertainties, this sample of individuals reflected inwardly on the potential impact of negative outcomes on their family members but hesitated to directly initiate ACP. These findings accentuate the importance for MCS clinicians to identify when uncertainties arise and work collaboratively with patients and families to promote openness to these sensitive decisions.

The patients' loss of trust in clinicians was another unexpected finding, which promoted ACP. Having worked closely with patients living with MCS, the first author has witnessed the strong trust placed in clinicians, especially around discussions about prognoses and healthcare treatment options. In stark contrast, there was a persistent dearth of ACP between patients and clinicians. A possible explanation for limited ACP was previously due to the overestimation of device function and confidence in ongoing technological advances for cardiac devices.12 However, participants in this sample were unique in that they reflected a realistic awareness of the device function and the limitations of living with MCS. Furthermore, during these interviews, participants were ready and able to verbalize ACP-related questions and concerns when given the time and opportunity. Another possible reason why MCS clinicians may not have initiated ACP could be similar to previous findings, where only 15% of cardiologists felt responsible to engage patients in ACP and, instead, relied on palliative care specialists.35 Future investigations need to explore clinicians' perceptions about what hinders and facilitates their engagement in ACP. Additional insight into the lack of ongoing ACP revolved around the emphasis on heart transplant as the ultimate outcome. What the current study adds is an understanding of the missing ACP during the complex and prolonged wait for transplant. There was mutual silence as patients with living with MCS waited for ACP and clinicians hesitated to discuss sensitive matters. Thus, it was under these less-than-ideal circumstances that exasperated patients lost trust in the clinicians and finally warily pivoted to self-initiated ACP.

Strengths and Limitations

To our knowledge, the findings from the current study were the first to examine MCS individuals' firsthand experiences about ACP decision making. Strengths of the investigation include rich narratives that fulfilled theoretical data saturation to support developing a theoretical framework. Another strength is the usefulness of this situation-specific theory to recognize clinical implications for the future of ACP among the population living with MCS.

However, the findings of this investigation are notwithstanding potential limitations. Participants were recruited from 2 large medical institutions in Southern California, and the findings are not representative of patients living with MCS nationwide. Unintended sampling bias may have potentially skewed our findings because individuals more open to discussing ACP were probably more likely to agree to participate than those who did not volunteer. Finally, the qualitative design of our study relied on participants' retrospective reporting of their experiences, which potentially introduced recall bias.

Conclusions

People living with MCS are exposed to unpredictable changes and uncertainties throughout their trajectories that require ongoing ACP. Grounded in the words of the current sample of individuals living with MCS, ACP pivoted around experiences of uncertain outcomes. As synthesized in the theory of pivoting uncertainties, these descriptions revealed multifarious complexities in ACP decision making that were both expansive and interrelated. The paradoxical process between the loss of trust and enhanced ACP highlighted important clinical aspects of maintaining rapport with patient and family and balancing the discomforts of discussing adversities. Using the theory of pivoting uncertainties, clinicians can engage patients in conversation about the changing nature inherent to their MCS trajectory. By acknowledging uncertainties, clinicians can open the doorway to communication without patients having to first experience distrust and incongruent expectations. Consequently, clinicians need to shift away from focusing solely on transplantation and embrace uncertainties that arise at various time points, which enhance ongoing ACP throughout the trajectory.

Future research on this topic is needed to examine nursing interventions that can be implemented at the bedside and throughout the MCS trajectory to enhance ongoing ACP. In addition, education, training, and simulations on ACP are needed to enhance clinicians' confidence and efficacy for engaging patients in ongoing conversations.

What’s New and Important
  • This sample of individuals living with MCS voiced a preference for their MCS clinicians to initiate ongoing ACP when complications arose and transplant was delayed.
  • The emphasis clinicians placed on heart transplantation seemed to act as a barrier to ACP; instead, when faced with prolonged waits for transplants and increasingly uncertain outcomes, patients became exasperated with the mutual silence and pivoted to warily initiating conversations.
  • The theory of pivoting uncertainties is useful for examining when and how to engage MCS individuals in ongoing ACP.

REFERENCES

1. Kozik DJ, Plunkett MD. Mechanical circulatory support. Organogenesis. 2011;7(1):50–63. doi:10.4161/org.7.1.14030.
2. Teuteberg JJ, Cleveland JC Jr., Cowger J, et al. The society of thoracic surgeons INTERMACS 2019 annual report: the changing landscape of devices and indications. Ann Thorac Surg. 2020;109(3):649–660. doi:10.1016/j.athoracsur.2019.12.005.
3. Schramm R, Morshuis M, Schoenbrodt M, et al. Current perspectives on mechanical circulatory support. Eur J Cardio-thoracic Surg. 2019;55:I31–I37. doi:10.1093/ejcts/ezy444.
4. Molina EJ, Shah P, Kiernan MS, et al. The society of thoracic surgeons INTERMACS 2020 annual report. Ann Thorac Surg. 2021;111:778–792. doi:10.1016/j.athoracsur.2020.12.038.
5. American Heart Association. Cardiovascular disease: a costly burden for America—projections through 2035. Published 2017. https://healthmetrics.heart.org/wp-content/uploads/2017/10/Cardiovascular-Disease-A-Costly-Burden.pdf. Accessed April 2, 2018.
6. Kusne S, Mooney M, Danziger-Isakov L, et al. An ISHLT consensus document for prevention and management strategies for mechanical circulatory support infection. J Heart Lung Transplant. 2017;36(10):1137–1153. doi:10.1016/j.healun.2017.06.007.
7. Sudore RL, Lum HD, You JJ, et al. Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. J Pain Symptom Manage. 2017;53:821–832.e1. doi:10.1016/j.jpainsymman.2016.12.331.
8. Sinha S, Belcher C, Torke A, et al. Development of a protocol for successful palliative care consultation in population of patients receiving mechanical circulatory support. J Pain Symptom Manage. 2017;54(4):583–588. doi:10.1016/j.jpainsymman.2017.07.021.
9. McIlvennan CK, Jones J, Allen LA, Swetz KM, Nowels C, Matlock DD. Bereaved caregiver perspectives on the end-of-life experience of patients with a left ventricular assist device. JAMA Intern Med. 2016;176(4):534–539. doi:10.1001/jamainternmed.2015.8528.
10. Centers for Medicare & Medicaid Services. Decision memo for ventricular assist devices for bridge-to-transplant and destination therapy (CAG-00432R). Published 2013. http://www.cms.gov/medicare-coverage-database/details/nca-decision-memo.aspx?NCAId=268&NCDId=246&ncdver=6&IsPopup=y&bc=AAAAAAAAAgAAAA%3D%3D&. Accessed January 11, 2021.
11. Chuzi S, Hale S, Arnold J, et al. Pre-ventricular assist device palliative care consultation: a qualitative analysis. J Pain Symptom Manage. 2019;57:100–107. doi:10.1016/j.jpainsymman.2018.09.023.
12. Hadler RA, Goldstein NE, Bekelman DB, et al. “Why would I choose death?”: a qualitative study of patient understanding of the role and limitations of cardiac devices. J Cardiovasc Nurs. 2019;34(3):275–282. doi:10.1097/JCN.0000000000000565.
13. Braun LT, Grady KL, Kutner JS, et al. Palliative care and cardiovascular disease and stroke: a policy statement from the American Heart Association/American Stroke Association. Circulation. 2016;134(11):e198–e225. doi:10.1161/CIR.0000000000000438.
14. Sagin A, Kirkpatrick JN, Pisani BA, Fahlberg BB, Sundlof AL, O'Connor NR. Emerging collaboration between palliative care specialists and mechanical circulatory support teams: a qualitative study. J Pain Symptom Manage. 2016;52(4):491–497.e1. doi:10.1016/j.jpainsymman.2016.03.017.
15. Charmaz K. Constructing Grounded Theory. 2nd ed. Thousand Oaks, CA: Sage; 2014.
16. Turner JH. The Structure of Sociological Theory. 5th ed. Belmont, CA: Wadsworth; 1991.
17. Charon JM. Symbolic Interactionism: An Introduction, an Interpretation, an Integration. 10th ed. Upper Saddle River, NJ: Pearson Education; 2009.
18. Kennedy RE, Williams CP, Sawyer P, Allman RM, Crowe M. Comparison of in-person and telephone administration of the mini-mental state examination in the University of Alabama at Birmingham study of aging. J Am Geriatr Soc. 2014;62(10):1928–1932. doi:10.1111/jgs.13027.
19. Corbin JM, Strauss AL. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. 4th ed. Thousand Oaks, CA: Sage; 2015.
20. Lincoln YS, Guba EG. Naturalist Inquiry. Beverly Hills, CA: Sage; 1985.
    21. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–357. doi:10.1093/intqhc/mzm042.
    22. Levitt HM, Bamberg M, Creswell JW, Frost DM, Josselson R, Suárez-Orozco C. Journal article reporting standards for qualitative primary, qualitative meta-analytic, and mixed methods research in psychology: the APA publications and communications board task force report. Am Psychol. 2018;73:26–46. doi:10.1037/amp0000151.
    23. Erlandson DA, Harris EL, Skipper BL, Allen SD. Doing Naturalistic Inquiry: A Guide to Methods. London, United Kingdom: Sage; 1993.
      24. Muhr T. Atlas.ti [computer software]. Version 7. Berlin: Berlin Scientific Software Development GmbH; 2017.
      25. Im EO, Meleis AI. Situation Specific Theories: Development, Utilization, and Evaluation in Nursing. Cham, Switzerland: Springer International Publishing; 2021. doi:10.1007/978-3-030-63223-6
      26. Mishel MH. Uncertainty in illness. Image J Nurs Sch. 1988;20:225–232. doi:10.1111/j.1547-5069.1988.tb00082.x.
      27. Mishel MH. Reconceptualization of the uncertainty in illness theory. Image J Nurs Sch. 1990;22(4):256–262. doi:10.1111/j.1547-5069.1990.tb00225.x.
      28. Salomon S, Frankel H, Chuang E, Eti S, Selwyn P. Implementing routine palliative care consultation before LVAD implantation: a single center experience. J Pain Symptom Manage. 2018;55:1350–1355. doi:10.1016/j.jpainsymman.2017.12.490.
      29. Nakagawa S, Takayama H, Takeda K, et al. Association between “unacceptable condition” expressed in palliative care consultation before left ventricular assist device implantation and care received at the end of life. J Pain Symptom Manage. 2020;60(5):976–983.e1. doi:10.1016/j.jpainsymman.2020.05.025.
      30. O'Connor NR, Moyer ME, Kirkpatrick JN. Scripted nurse visits: a resource-efficient palliative care model for ventricular assist devices. J Palliat Med. 2016;19:1312–1315. doi:10.1089/jpm.2016.0065.
      31. Dempsey L, Dowling M, Larkin P, Murphy K. Sensitive interviewing in qualitative research. Res Nurs Heal. 2016;39:480–490. doi:10.1002/nur.21743.
      32. Nakagawa S, Ando M, Takayama H, et al. Withdrawal of left ventricular assist devices: a retrospective analysis from a single institution. J Palliat Med. 2020;23(3):368–374. doi:10.1089/jpm.2019.0322.
      33. Blumenthal-Barby JS, Kostick KM, Delgado ED, et al. Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: implications for informed consent and shared decision-making. J Heart Lung Transplant. 2015;34(9):1182–1189. doi:10.1016/j.healun.2015.03.026.
      34. Michael N, O'Callaghan C, Baird A, Hiscock N, Clayton J. Cancer caregivers advocate a patient- and family-centered approach to advance care planning. J Pain Symptom Manage. 2014;47(6):1064–1077. doi:10.1016/j.jpainsymman.2013.07.009.
      35. Chandar M, Brockstein B, Zunamon A, et al. Perspectives of health-care providers toward advance care planning in patients with advanced cancer and congestive heart failure. Am J Hosp Palliat Med. 2017;34:423–429. doi:10.1177/1049909116636614.
      Keywords:

      advance care planning; decision making; grounded theory; palliative care; ventricular assist device

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