Carolyn T. Nowels

Patient and caregiver congruence: the importance of dyads in heart failure care.

Background:Informal (family) caregivers are integrally involved in chronic heart failure (HF) care. Few studies have examined HF patients and their informal caregiver as a unit in a relationship, or a dyad. Dyad congruence, or consistency in perspective, is relevant to numerous aspects of living with HF and HF care. Incongruence or lack of communication could impair disease management and advance care planning. Objectives:The purpose of this qualitative study was to examine for congruence and incongruence between HF patients and their informal (family) caregivers. Secondary analyses examined the relationship of congruence to emotional distress and whether dyad relationship characteristics (eg, parent-child vs spouse) were associated with congruence. Methods:Thirty-four interviews consisting of HF patients and their current informal caregiver (N = 17 dyads) were conducted. Each dyad member was asked similar questions about managing HF symptoms, psychosocial care, and planning for the future. Interviews were transcribed and analyzed using the general inductive approach. Results:Congruence, incongruence, and lack of communication between patients and caregivers were identified in areas such as managing illness, perceived care needs, perspectives about the future of HF, and end-of-life issues. Seven dyads were generally congruent, 4 were incongruent, and 6 demonstrated a combination of congruence and incongruence. Much of the tension and distress among dyads related to conflicting views about how emotions should be dealt with or expressed. Dyad relationship (parent-child vs spouse) was not clearly associated with congruence, although the relationship did appear to be related to perceived caregiving roles. Conclusions:Several areas of HF clinical and research relevance, including self-care, advance care planning, and communication, were affected by congruence. Further research is needed to define how congruence is related to other relationship characteristics, such as relationship quality, how congruence can best be measured quantitatively, and to what degree modifying congruence will lead to improved HF patient and caregiver outcomes.

Decision Making for Destination Therapy Left Ventricular Assist Devices “There Was No Choice” Versus “I Thought About It an Awful Lot”

Background—Destination therapy left ventricular assist devices (DT LVADs) are one of the most invasive medical interventions for end-stage illness. How patients decide whether or not to proceed with device implantation is unknown. We aimed to understand the decision-making processes of patients who either accept or decline DT LVADs. Methods and Results—Between October 2012 and September 2013, we conducted semistructured, in-depth interviews to understand patients’ decision-making experiences. Data were analyzed using a mixed inductive and deductive approach. Twenty-two eligible patients were interviewed, 15 with DT LVADs and 7 who declined. We found a strong dichotomy between decision processes with some patients (11 accepters) being automatic and others (3 accepters, 7 decliners) being reflective in their approach to decision making. The automatic group was characterized by a fear of dying and an over-riding desire to live as long as possible: “[LVAD] was the only option I had…that or push up daisies…so I automatically took this.” By contrast, the reflective group went through a reasoned process of weighing risks, benefits, and burdens: “There are worse things than death.” Irrespective of approach, most patients experienced the DT LVAD decision as a highly emotional process and many sought support from their families or spiritually. Conclusions—Some patients offered a DT LVAD face the decision by reflecting on a process and reasoning through risks and benefits. For others, the desire to live supersedes such reflective processing. Acknowledging this difference is important when considering how to support patients who are faced with this complex decision.

Patient and Cardiologist Perceptions on Decision Making for Implantable Cardioverter‐Defibrillators: A Qualitative Study

Background:  Although implantable cardioverter‐defibrillators (ICDs) reduce mortality in selected patients, they are also associated with potential risks. Periprocedural decision making requires understanding both benefits and risks.

Returning to work after cancer: quantitative studies and prototypical narratives

Objective: A combination of quantitative data and illustrative narratives may allow cancer survivorship researchers to disseminate their research findings more broadly. We identified recent, methodologically rigorous quantitative studies on return to work after cancer, summarized the themes from these studies, and illustrated those themes with narratives of individual cancer survivors.

Bereaved Caregiver Perspectives on the End-of-Life Experience of Patients With a Left Ventricular Assist Device

IMPORTANCE For patients and their loved ones, decisions regarding the end of life in the setting of chronic progressive illness are among the most complex in health care. Complicating these decisions are increasingly available, invasive, and potentially life-prolonging technologies such as the left ventricular assist device (LVAD). OBJECTIVE To understand the experience of bereaved caregivers and patients at the end of life who have an LVAD. DESIGN, SETTING, AND PARTICIPANTS Semistructured, in-depth interviews were conducted between September 10 and November 21, 2014, with 8 bereaved caregivers of patients with an LVAD who were recruited from a single institution. Data were analyzed from December 13, 2014, to February 18, 2015, using a mixed inductive and deductive approach. MAIN OUTCOMES AND MEASURES Themes from semistructured interviews. RESULTS The 8 caregivers (6 females) described 3 main themes that coalesced around feelings of confusion in the final weeks with their loved ones: (1) the process of death with an LVAD, (2) the legal and ethically permissible care of patients with an LVAD approaching death, and (3) fragmented integration of palliative and hospice care. CONCLUSIONS AND RELEVANCE Despite increasing use of LVADs in patients with advanced heart failure, bereaved caregivers of patients with an LVAD describe a high level of confusion at the end of life. There remains a need for the health care community to develop clear guidance on the management of patients with an LVAD at the end of life. Future work will focus on the educational process and the ideal timing and reiteration of such information to patients and families.

The experience of fatigue as a distressing symptom of heart failure

OBJECTIVE We explored the perceptions, experience, and meaning of fatigue as a distressing symptom of chronic heart failure (HF). BACKGROUND Fatigue, a common symptom of HF, may indicate worsening condition. Patients interpret their symptoms to determine the need for assistance. The meaning of fatigue in everyday life for HF patients in the United States is not well understood. METHODS We performed an interpretive study of in-depth interviews with HF patients (n = 26) who reported fatigue as a symptom, using a thematic analysis of transcripts within an iterative group framework. RESULTS Fatigue is characterized by patient values related to their self-identity, their body, their experience of time, their environment, and their relationships with others, including the healthcare system. CONCLUSIONS Fatigue influences perceived proximity to death and how patients try to preserve what they can do. A patients HF management plan should be tailored and responsive to that patients experience of fatigue as communicated by the patient.

Feasibility and acceptability of a decision aid designed for people facing advanced or terminal illness: a pilot randomized trial

Background  Patients nearing the end of their lives face an array of difficult decisions.

The Future as a Series of Transitions: Qualitative Study of Heart Failure Patients and Their Informal Caregivers

ABSTRACTBACKGROUNDAdvance care planning often only focuses on written advance directives rather than on future goals important to patients and families. Heart failure has a particularly uncertain future with variable clinical trajectories. A better understanding of patient and family concerns about and perceptions of the future could improve advance care planning.OBJECTIVEWe aimed to identify how patients with heart failure and their informal (family) caregivers perceive their future.DESIGNThis was a cross-sectional study using qualitative methods.PARTICIPANTSThirty-three patients from an academic health care system with New York Heart Association class II–IV heart failure and 20 of their informal caregivers participated in the study. We used a purposive sampling strategy to include patients within a range of ages and health statuses.APPROACHParticipants were asked in individual, semi-structured interviews: “When you think about what lies ahead, what comes to mind?” Qualitative analysis used an inductive approach. Early in the analysis, it became clear that participants’ narratives about the future were described in terms of past transitions. This led us to use transition theory to further guide analysis. Transition theory describes how people restructure their reality and resolve uncertainty during change.KEY RESULTSPatients and their caregivers talked about past and present transitions when asked about the future: “The present gets in the way of talking about the future.” We identified four common pivotal transitions, including the shock of first being diagnosed with heart failure; learning to adjust to life with heart failure; reframing and taking back control of one’s life; and understanding and accepting that death is inevitable. Concerns about the future were framed based on the most recent transition.CONCLUSIONSHeart failure is a series of transitions according to patients and caregivers. By recognizing and educating patients about transitions, identifying transition-specific concerns, and supporting patients and caregivers through transitions, the process of planning for the future as part of advance care planning may be improved.

Feasibility and Acceptability of a Collaborative Care Intervention To Improve Symptoms and Quality of Life in Chronic Heart Failure: Mixed Methods Pilot Trial

BACKGROUND People with chronic heart failure (HF) suffer from numerous symptoms that worsen quality of life. The CASA (Collaborative Care to Alleviate Symptoms and Adjust to Illness) intervention was designed to improve symptoms and quality of life by integrating palliative and psychosocial care into chronic care. OBJECTIVE Our aim was to determine the feasibility and acceptability of CASA and identify necessary improvements. METHODS We conducted a prospective mixed-methods pilot trial. The CASA intervention included (1) nurse phone visits involving structured symptom assessments and guidelines to alleviate breathlessness, fatigue, pain, or depression; (2) structured phone counseling targeting adjustment to illness and depression if present; and (3) weekly team meetings with a palliative care specialist, cardiologist, and primary care physician focused on medical recommendations to primary care providers (PCPs, physician or nurse practioners) to improve symptoms. Study subjects were outpatients with chronic HF from a Veterans Affairs hospital (n=15) and a university hospital (n=2). Measurements included feasibility (cohort retention rate, medical recommendation implementation rate, missing data, quality of care) and acceptability (an end-of-study semi-structured participant interview). RESULTS Participants were male with a median age of 63 years. One withdrew early and there were <5% missing data. Overall, 85% of 87 collaborative care team medical recommendations were implemented. All participants who screened positive for depression were either treated for depression or thought to not have a depressive disorder. In the qualitative interviews, patients reported a positive experience and provided several constructive critiques. CONCLUSIONS The CASA intervention was feasible based on participant enrollment, cohort retention, implementation of medical recommendations, minimal missing data, and acceptability. Several intervention changes were made based on participant feedback.

Evidence of Cognitive Bias in Decision Making Around Implantable-Cardioverter Defibrillators: a Qualitative Framework Analysis

BACKGROUND Studies have demonstrated that patients with primary prevention implantable cardioverter-defibrillators (ICDs) often misunderstand the ICD. Advances in behavioral economics demonstrate that some misunderstandings may be due to cognitive biases. We aimed to explore the influence of cognitive bias on ICD decision making. METHODS AND RESULTS We used a qualitative framework analysis including 9 cognitive biases: affect heuristic, affective forecasting, anchoring, availability, default effects, halo effects, optimism bias, framing effects, and state dependence. We interviewed 48 patients from 4 settings in Denver. The majority were male (n = 32). Overall median age was 61 years. We found frequent evidence for framing, default, and halo effects; some evidence of optimism bias, affect heuristic, state dependence, anchoring and availability bias; and little or no evidence of affective forecasting. Framing effects were apparent in overestimation of benefits and downplaying or omitting potential harms. CONCLUSIONS We found evidence of cognitive bias in decision making for ICD implantation. The majority of these biases appeared to encourage ICD treatment.