Adapting the serious illness conversation guide for unhoused older adults: a rapid qualitative study.

BACKGROUND: Older adults experiencing homelessness (OAEH) age quickly and die earlier than their housed counterparts. Illness-related decisions are best guided by patients' values, but healthcare and homelessness service providers need support in facilitating these discussions. The Serious Illness Conversation Guide (SICG) is a communication tool to guide discussions but has not yet been adapted for OAEH. METHODS: We aimed to adapt the SICG for use with OAEH by nurses, social workers, and other homelessness service providers. We conducted semi-structured interviews with homelessness service providers and cognitive interviews with OAEH using the SICG. Service providers included nurses, social workers, or others working in homeless settings. OAEH were at least 50 years old and diagnosed with a serious illness. Interviews were conducted and audio recorded in shelters, transitional housing, a hospital, public spaces, and over Zoom. The research team reviewed transcripts, identifying common themes across transcripts and applying analytic notetaking. We summarized transcripts from each participant group, applying rapid qualitative analysis. For OAEH, data that referenced proposed adaptations or feedback about the SICG tool were grouped into two domains: "SICG interpretation" and "SICG feedback". For providers, we used domains from the Toolkit of Adaptation Approaches: "collaborative working", "team", "endorsement", "materials", "messages", and "delivery". Summaries were grouped into matrices to help visualize themes to inform adaptations. The adapted guide was then reviewed by expert palliative care clinicians for further refinement. RESULTS: The final sample included 11 OAEH (45% Black, 61 ± 7 years old) and 10 providers (80% White, 8.9 ± years practice). Adaptation themes included changing words and phrases to (1) increase transparency about the purpose of the conversation, (2) promote OAEH autonomy and empowerment, (3) align with nurses' and social workers' scope of practice regarding facilitating diagnostic and prognostic awareness, and (4) be sensitive to the realities of fragmented healthcare. Responses also revealed training and implementation considerations. CONCLUSIONS: The adapted SICG is a promising clinical tool to aid in the delivery of serious illness conversations with OAEH. Future research should use this updated guide for implementation planning. Additional adaptations may be dependent on specific settings where the SICG will be delivered.

Perceived Control, Functional Status, Depressive Symptoms, and Anxiety: Mediating and Moderating Influences on Health-Related Quality of Life in Patients With Heart Failure.

BACKGROUND: Health-related quality of life (HRQoL) is poor in patients with heart failure. Psychological (ie, depressive symptoms [DS], anxiety, and perceived control) and physical (ie, functional status) factors are associated with HRQoL. The dynamic relationships among these variables and their impact on HRQoL remain unclear, limiting the ability to design effective interventions. PURPOSE: Our aim was to evaluate a moderated mediation model, in which the association between perceived control and HRQoL was hypothesized to be mediated by DS and anxiety in the presence of a moderator, functional status. METHODS: Patients (N = 426) with heart failure completed the Control Attitudes Scale-Revised to measure perceived control, Duke Activity Status Index for functional status, Patient Health Questionnaire-9 for DS, Brief Symptom Inventory for anxiety, and Minnesota Living with Heart Failure Questionnaire for HRQoL. We performed a moderated parallel mediation analysis. RESULTS: Higher levels of perceived control were associated with better HRQoL through lower levels of anxiety and DS in the presence of functional status (index of moderated mediation for DS, b = 0.029; 95% confidence interval, 0.016-0.045; for anxiety: b = 0.009, 95% confidence interval, 0.002-0.018). The effect of perceived control on psychological symptoms was stronger at low and moderate functional statuses; however, this effect diminished with increasing functional status. CONCLUSION: Functional status moderated the indirect effects of perceived control on HRQoL through DS and anxiety in patients with heart failure. Efforts to improve HRQoL by targeting perceived control may be more effective when considering DS and anxiety in patients with low to moderate levels of functional status.

Mediators of the Association Between Cognitive Function and Self-care Behaviors in Patients Hospitalized With an Exacerbation of Heart Failure.

BACKGROUND: Patients with heart failure (HF) must engage in self-care, yet their self-care is often poor. Cognitive function commonly is impaired in HF and is associated with poor self-care. Heart failure knowledge and self-care confidence also are needed to preform self-care. Few investigators have examined mediators of the association of cognitive function with self-care. OBJECTIVES: The aim of this study was to determine whether HF knowledge and self-care confidence mediated the association of cognitive function with self-care maintenance and management among patients with HF. METHODS: This was a cross-sectional observational study of 164 patients with HF. Cognitive function was assessed using the Montreal Cognitive Assessment. Self-care maintenance and self-care management behaviors and self-care confidence were measured using the Self-care of Heart Failure Index. Heart failure knowledge was measured using the Dutch Heart Failure Knowledge Scale. We conducted 2 parallel mediation analyses using the PROCESS macro in SPSS, one for self-care maintenance and one for self-care management. RESULTS: Cognitive function was indirectly associated with self-care maintenance through HF knowledge (indirect effect, 0.54; 95% confidence interval, 0.10-1.02) and self-care confidence (indirect effect, 0.26; 95% confidence interval, 0.04-0.54). Those with better cognitive function had more HF knowledge and self-care confidence. Better cognitive function was not directly associated with self-care management but indirectly associated with better self-care management through higher self-care confidence (indirect effect, 0.50; 95% confidence interval, 0.04-1.05). CONCLUSIONS: Both HF knowledge and self-care confidence mediated the association of cognitive function with self-care maintenance, and only self-care confidence mediated the association between cognitive function and self-care management. Interventions targeting HF knowledge and self-care confidence may improve self-care even for those with lower cognitive function and need to be developed and tested.

Mediation by Fatalism of the Association Between Symptom Burden and Self-care Management in Patients With Heart Failure.

BACKGROUND: Clinicians and researchers often assume that symptom burden is associated with self-care management (SCM) in patients with heart failure (HF). However, that association is often not borne out in simple regression analyses and may be because another variable mediates the association. Fatalism is an appropriate candidate for mediation and is the belief that circumstances are predetermined without opportunity for control by individuals. OBJECTIVE: Our objective was to determine whether fatalism mediated the relationship of symptom burden with SCM among adults with HF. METHODS: We conducted a secondary analysis (N = 95) from a clinical trial. We used Self-care of HF Index to measure SCM, the Memorial Symptom Assessment Scale-HF for symptom burden, and the Cardiovascular Disease Fatalism Instrument to measure fatalism. We used the PROCESS macro to evaluate mediation. RESULTS: Symptom burden was not directly associated with SCM (effect coefficient [C'] = 0.0805; 95% confidence interval, -0.048 to 0.209; P = .217). There was, however, an indirect pathway between symptom burden and SCM through fatalism (ab = -0.040; 95% confidence interval, -0.097 to -0.002). Those with higher symptom burden were more fatalistic (a = 0.004, P = .015), and greater fatalism was associated with worse SCM (b = -9.132, P = .007). CONCLUSION: Symptom burden, not directly associated with SCM, is associated through the mediator of fatalism. Interventions to improve SCM should include strategies to mitigate fatalistic views. Self-care management interventions should focus on promoting internal locus of control or increasing perceptions of perceived control to decrease fatalism and improve engagement in self-care.

Palliative and hospice social workers' moral distress during the COVID-19 pandemic.

OBJECTIVES: Moral distress is associated with adverse outcomes contributing to health-care professionals' worsened mental and physical well-being. Medical social workers have been frontline care providers throughout the COVID-19 pandemic, and those specializing in palliative and hospice care have been particularly affected by the overwhelming numbers of those seriously ill and dying. The main objectives of this study were (1) to assess palliative and hospice social workers' experiences of moral distress during COVID-19 and (2) to identify and describe participants' most morally distressing scenarios. METHODS: Using a mixed-methods approach, participants completed an online survey consisting of the Moral Distress Thermometer (MDT) and open-ended text responses. RESULTS: A total of 120 social work participants responded to the study, and the majority of participants (81.4%) had experienced moral distress with an average MDT score of 6.16. COVID-19 restrictions emerged as the main source of moral distress, and an overlap between the clinical and system levels was observed. Primary sources of moral distress were grounded in strict visitation policies and system-level standards that impacted best practices and personal obligations in navigating both work responsibilities and safety. SIGNIFICANCE: In the first year of the COVID-19 pandemic, palliative and hospice social work participants indicated high levels of moral distress. Qualitative findings from this study promote awareness of the kinds of distressing situations palliative and hospice social workers may experience. This knowledge can have education, practice, and policy implications and supports the need for research to explore this aspect of professional social work.

Grief and Loss During Care Transitions: Experiences of Direct Care Workers.

Direct Care Workers (DCW) provide both personal care to patients and emotional support to patients and caregivers in hospice and palliative care. DCWs often develop close ties and are then expected to work with new clients immediately following a care transition, with little or no time to grieve. A qualitative pilot study (n = 24) was conducted to explore the experience of DCWs during care transitions. Data was collected via focus groups and individual interviews. Thematic analysis was used. Results suggest DCWs managed their experiences (n = 19), by anticipating and accepting grief and loss (n = 21), employing personal coping strategies (n = 19), and saying good-bye (n = 15). Relational factors impacted the experience of care transitions (n = 22), including building and maintaining the relationship (n = 14), and the strength of perceived connections (n = 15). Increased organizational support and training to help address grief and loss will better support DCWs and the direct care workforce.

Dying Online: An Analysis of End-of-Life Narratives.

Technology is changing many aspects of our daily lives including how we share our experiences. While there have been many advances in technology to sustain life, it has also led to changes in how we die. This study utilized publicly available online narratives (vlog postings) written by individuals diagnosed with a terminal illness to explore themes on what dying individuals wished to say about their experiences (n = 39). While the content of the messages varied, universally all postings provided advice for living a good life. The implications of these narratives are still unknown. Questions remain about the role online peer support plays in the dying process and the extent to which sharing one's digital story can affect others online. The act of being introspective at the end of life and the desire for social connection is similar to other forms of social work intervention such as dignity therapy suggesting an opportunity for further exploration. Additionally, these end-of-life narratives could also serve as a tool for educating future social work professionals about the experiences of those diagnosed with a terminal illness.

The relationship of health activation with risk of future cardiovascular disease among rural family caregivers of patients with chronic illnesses.

BACKGROUND: Family caregivers are at higher risk for developing cardiovascular disease (CVD) than non-caregivers. This risk is worse for those who live in rural compared to urban areas. Health activation, an indicator of engagement in self-care, is predictive of health outcomes and CVD risk in several populations. However, it is not known whether health activation is associated with CVD risk in rural caregivers of patients with chronic illnesses nor is it clear whether sex moderates any association. OBJECTIVES: Our aims were to determine (1) whether health activation independently predicts 10-year CVD risk; and (2) whether sex interacts with health activation in the prediction of 10-year CVD risk among rural family caregivers (N = 247) of patients with chronic illnesses. METHODS: Health activation was measured using the Patient Activation Measure. The predicted 10-year risk of CVD was assessed using the Framingham Risk Score. Data were analyzed using nonlinear regression analysis. RESULTS: Higher levels of health activation were significantly associated with decreased risk of developing CVD (p < 0.028). There was no interaction of sex with health activation on future CVD risk. However, male caregivers had greater risk of developing CVD in the next 10 years than female caregivers (p < 0.001). CONCLUSIONS: We demonstrated the importance of health activation to future CVD risk in rural family caregivers of patients with chronic illnesses. We also demonstrated that despite the higher risk of future CVD among male, the degree of association between health activation and CVD risk did not differ by sex.

Integrating Palliative Care into the Management of Heart Failure with Reduced Ejection Fraction: A Practice Pearl.

Heart failure with reduced ejection fraction is a progressive, undulating syndrome with an unpredictable illness course featuring intermittent symptom exacerbations and periods of stability. The progressive, variable trajectory of the illness burdens patients with myriad threats to physical, emotional, and spiritual functioning, quality of life and complex treatment decisions. Integrating palliative care is a recommended best practice for heart failure management; however, confusion persists about what palliative care comprises in the context of heart failure.

Moral distress during COVID-19: The importance of perceived organizational support for hospital nurses.

Moral distress, or the inability to act congruent with moral beliefs, has been of concern for healthcare professionals especially since the COVID-19 pandemic. Hospital nurses are particularly affected in their roles with mounting administrative pressures and demands. We examined whether general and COVID-specific support in employing healthcare organizations predicted moral distress in a sample of inpatient hospital nurses. A total of 248 nurses completed the Measure of Moral Distress for Healthcare Professionals, Survey of Perceived Organizational Support, COVID Organizational Support survey, and the Hospital Ethical Climate Scale. We found that general and COVID-related organizational support were predictors of moral distress after controlling for age, gender, working in an intensive care unit setting, and ethical climate. Findings support the need for a comprehensive strategy to address moral distress, including institutional efforts to convey support and commitment. Strategies moral distress may be experienced differently based on gender identity.

Variation in Left Ventricular Assist Device Postdischarge Caregiver Requirements: Results From a Mixed-Methods Study With Equity Implications.

BACKGROUND: Left ventricular assist device (LVAD) evaluation includes a psychosocial assessment, conducted by social workers (SWs) on the advanced heart failure multidisciplinary team. Postdischarge caregiving plans are central to psychosocial evaluation. Caregiving's relationship with LVAD outcomes is mixed, and testing patients' social resources may disadvantage those from historically undertreated groups. We describe variation in policies defining adequate caregiving plans post-LVAD implant and possible impacts on patients from marginalized groups. METHODS: This was a 2-phase sequential mixed-methods study: (1) phase 1, survey of US-based LVAD SWs, describing assessment structure and policies guiding candidacy outcomes; and (2) phase 2, individual interviews with SWs to further describe how caregiving plan adequacy impacts LVAD candidacy. RESULTS: Sixty-seven SWs returned surveys (rr=47%) from unique programs. Caregiving plan inadequacy (n=30) was the most common psychosocial dealbreaker. When asked what duration of caregiving is required, 23% indicated ≥3 months, 27% 4 to 12 weeks, and 30% <4 weeks. Two reported no duration requirement, 6 stated an indefinite 24/7 commitment was necessary. Across 22 interviews, SWs mirrored that caregiving plans were the most common psychosocial contraindication. How caregiving is operationalized varied. Participants voiced a tension between extended caregiving improving outcomes and the sense that some people of color, women, or low socioeconomic status patients struggle to meet stringent requirements. CONCLUSIONS: Policies regarding adequate duration of 24/7 caregiving vary, but inadequate caregiving plans are the most common psychosocial contraindication. Participants worry about patients' ability to meet restrictive requirements, particularly from historically undertreated groups. This highlights a need to operationalize quality caregiving, standardize assessment, and support medically appropriate patients with strained social resources.

A survey of moral distress and end of life care in mechanical circulatory support nurses.

BACKGROUND: Patients receiving left ventricular assisted device (LVAD) require the expertise of specialty trained nurses referred to as VAD coordinators. The long-term use of these devices has created morally distressing situations for VAD coordinators. OBJECTIVE: This pilot study sought to explore the association between ventricular assistance device (VAD) coordinators' unique roles and responsibilities and moral distress. METHODS: An online survey was distributed to VAD coordinators through a listserv. The non-probability sample consisted of 36 nurses across the United States. RESULTS: Bivariate analyses identified a number of areas of difference in respondent's levels of moral distress based on specific responsibilities associated with their role as a VAD coordinator. CONCLUSION: These findings indicate team communication, competence, and location of VAD discontinuation may be important factors related to VAD coordinators' distress. Future research is needed with larger sample sizes and continued exploration of the impact of specialized training and curricula content.

Top Ten Tips Palliative Care Clinicians Should Know About Medical Decision-Making Capacity Assessment.

Palliative care (PC) clinicians treat seriously ill patients who are at increased risk for compromised decision-making capacity (DMC). These patients face profound and complex questions about which treatments to accept and which to decline. PC clinicians, therefore, have the especially difficult task of performing thorough, fair, and accurate DMC assessments in the face of the complex effects of terminal illness, which may be complicated by fluctuating acute medical conditions, mental illness, or cognitive dysfunction. This study, written by a team of clinicians with expertise in PC, ethics, psychiatry, pediatrics, and geriatrics, aims to provide expert guidance to PC clinicians on best practice for complex DMC assessment.

"I Just Feel Like I Always Did": Inotropic Dependency at End of Life.

BACKGROUND: Patients not considered for mechanical circulatory support or heart transplant may be dependent on inotropic therapy at end of life. End-of-life conversations in advanced heart failure can be challenging for providers, but guidelines recommend frequent goals-of-care conversations when inotropes are used as a palliative treatment. The purpose of this study was to identify aspects of care pertinent for health-care professionals working with patients in end-stage heart failure who are receiving continuous inotropic support. METHODS: Qualitative analysis was used to examine 3 audio-recorded semistructured interviews with 1 patient, her family, and her cardiologist. The selected patient was an older adult, diagnosed with advanced heart failure, and dependent on continuous inotropic therapy with no other advanced treatment options available. RESULTS: The analysis revealed that (1) reliance on others, (2) contending with uncertainty, and (3) deciding when to discontinue inotropic support were identified as themes central to the patient's and provider's experience. CONCLUSION: This study offers insight into how to best support and communicate with patients having advanced heart failure who are dependent on continuous inotropic therapy at end of life.