Transitions between skilled home health and hospice for persons living with dementia: a systematic review of literature.

BACKGROUND: In the United States (US), nearly one third of skilled home health (HH) patients and nearly one half of hospice patients have diagnoses of Alzheimer's disease and related dementias (ADRD), conditions often characterized by a slow decline in cognition and function. Many persons living with dementia (PLWDs) are cared for at home yet may transition between care settings such as skilled HH or hospice, potentially leading to fragmented and poorer care. The purpose of this systematic review was to examine literature pertaining to (I) care transitions for PLWD who are enrolled in skilled HH and hospice in the US, and (II) specifically, care transitions between skilled HH and hospice for PLWD. METHODS: We conducted a systematic review. From March to November 16, 2023, we searched CINAHL, PsychInfo (EBSCO version), and PubMed databases inputting keywords and index terms related to HH, care transition, hospice, and dementia. Articles were included if they were peer-reviewed, primary research studies that were published between 2017-2023 and addressed care transitions for PLWD enrolled in US skilled HH and hospice or transitions between the two settings. We evaluated the quality of each article and extracted relevant data. We described studies by setting while analyzing for similarities and differences between them. RESULTS: Of 230 studies, 14 met our inclusion criteria. We found that PLWD are at higher risk for early, unsuccessful discharge from-and readmission to-skilled HH; and PLWD are at higher risk for being discharged alive from hospice. Only one study pertained to care transitions for PLWD between skilled HH and hospice. CONCLUSIONS: We included only studies set in the US, as skilled HH and hospice may differ in policy and practice in other countries, which limits our findings. Future work should explore assessment approaches specific to PLWD that lead to higher quality of coordination of care to, from, and between skilled HH and hospice.

Experiences of Homeless Recipients of Social Model Hospice Care: A Photovoice Exploration.

Homelessness and caregiver insecurity are barriers to accessing hospice for end-of-life care. Some communities have implemented a community-based social model of hospice care, and reports of its characteristics and outcomes are growing in hospice and homeless literature. This case report explored the experiences of social model hospice recipients using photovoice, a community-based participatory method to photograph meaningful aspects of care. Participants (n = 3) took photos (n = 93), journaled, and participated in semistructured interviews as co-analyzers. Through deductive codes from the literature and inductive analysis of data, 6 themes were identified: having a physical location to receive care, involving the community, having spiritual needs attended to, acknowledging family/family of choice, connecting with animals, and feeling cared for. Participants offered few suggestions to improve care. Social model hospice provided a location for care, funding, and social support to address housing and caregiver insecurity. Results corroborated the social model hospice concept (antecedents, attributes, consequences). Findings add to the growing literature with implications for communities and leaders looking to start or improve care. Results suggest that photovoice may be a feasible method for eliciting firsthand experiences of residents. Findings may guide discussions about patient-reported aspects of care for a more accurate understanding of meaningful social model hospice care.

Engaging Sexual and Gender Minority Older Adults to Elicit Concerns and Recommendations for Communicating Care Preferences in Long-Term Care: Focus Group Findings.

OBJECTIVES: 1) Describe sexual and gender minority (SGM) older adults' current practices and concerns for communicating end-of-life (EOL) and daily care preferences in long-term care (LTC); 2) Elicit ideas about adapting a video-based intervention to facilitate communication. METHODS: After consulting a community advisory board, we conducted two focus groups with SGM older adults ≥55 years of age recruited from a community-based service organization (n = 4) and a continuing care retirement community (n = 9). We audio-recorded, transcribed, and coded data using directed content analysis methods and summarized results descriptively. RESULTS: Most participants were cisgender (n = 12), female (n = 11), lesbian (n = 10), White and non-Hispanic (n = 13); mean age was 70.62. Participants' concerns included discrimination, autonomy, chosen family, and community; they linked daily care preferences with personhood and quality of life. They advocated for building intentional community-based support networks to help peers discuss preferences and produce videos before LTC transition and ensure compliance after. CONCLUSIONS: For SGM older adults, asserting and protecting their full personhood, through daily care preferences, is essential to quality of life in LTC. CLINICAL IMPLICATIONS: Video-recorded statements of daily preferences, facilitated and supported by a peer network, could promote culturally competent, person- and community-centered care for SGM older adults in LTC settings.

Adults Without Advocates and the Unrepresented: A Narrative Review of Terminology and Settings.

Socially isolated adults, including those with and without the ability to make medical decisions, are encountered in clinical practice and are at risk for adverse health outcomes. Consensus is lacking on appropriate terminology to describe subpopulations of these patients. In addition, little is known about the settings in which they present. These gaps prevent clinicians and policymakers from identifying and understanding these populations and deploying appropriate resources to meet their complex needs. We conducted a narrative review of literature on socially isolated adults aged 50 and older to assess and integrate the available evidence regarding the terminology used to describe unrepresented patients and adults without advocates to inform consensus on terminology. We also identified the settings in which unrepresented patients and adults without advocates are described in the literature, including both within and outside health care settings. Our results indicate that there is heterogeneity and inconsistency in the terminology used to describe socially isolated adults, as well as heterogeneity in the settings in which they are identified in the literature. Our findings suggest that future work should include achieving consensus on terminology and integrating proactive interdisciplinary interventions across health systems and communities to prevent adults without advocates from becoming unrepresented.

Meaningful connections: An education program to enhance resident-certified nursing assistant relationships.

Close relationships between nursing home residents and Certified Nursing Assistants (CNAs) result in positive outcomes for both residents and staff, including increased well-being for residents. However, many resident-CNA relationships remain superficial, are focused primarily on physical care, and interpersonal skill training for CNAs is sparse. The purpose of this study was to develop an education program to foster CNAs' interpersonal skills and relationship development. We conducted a literature review on CNA interpersonal skill training and disseminated a survey to CNAs to inform the education program. Literature review findings revealed that CNAs value their relationships with residents and desire more interpersonal training, but this training is often limited. The survey, which was disseminated via social media and facility contact referrals, asked responding CNAs (n = 73) to evaluate their perceptions of empowerment, interpersonal skill competency, and learning preferences. We found that most CNAs feel confident in their interpersonal skills, but they lack training in boundary-setting and bereavement support. About one-third of respondents did not feel that their work was valued or their strengths recognized by their supervisors. Most respondents reported that they valued visual (85%), experiential (91%) learning. The final program, Meaningful Connections, includes nine modules covering topics such as person-centered caregiving, empathy, emotional intelligence, and boundary-setting. One supplementary module provides potential adaptations to the curriculum to customize the needs of each participant group. The results of this project suggest a need for more CNA relationship training and support, especially in the areas of boundary-setting and bereavement.

Preparing for the Future While Living in the Present: Older Adults' Experiences Creating a Legacy of Values.

BACKGROUND AND OBJECTIVES: A legacy of values (e.g., legacy letter) is a nonlegal way to intentionally communicate intangible assets (e.g., values, life lessons, and emotional and supportive instruction) with others. There is scant research on legacy creation outside of a palliative care context, and no studies have explored the experiences of community-dwelling older adults creating a legacy of values. RESEARCH DESIGN AND METHODS: As part of an exploratory sequential mixed methods study, we conducted semistructured interviews with older adults (N = 16) who had previously created a legacy of values. We analyzed transcribed interviews using an interpretive descriptive approach. We iteratively coded interviews deductively with sensitizing concepts identified in the literature (existential well-being, end-of-life preparation and completion, generativity, and resilience), and inductively, based on participants' descriptions. Codes were categorized by patterns of motivations, content, outcomes, and meaning, and thematically summarized. RESULTS: We conceptualized the overall experience of creating a legacy of values as Preparing for the Future While Living in the Present and identified 4 themes: Preserving the Intangible for You and for Me, Sharing What I Want You to Know, Obtaining Peace through Reflection and Preparation, and Living into a Continuing Legacy. Participants attained peace, realized their life was not complete, and were challenged to live intentionally through legacy creation. DISCUSSION AND IMPLICATIONS: Creating a legacy of values may concurrently prepare older adults for the end of life and the remainder of life. These findings offer insight into a generative act that can promote intentional living among older adults.

Leaving a lasting legacy: A scoping review of ethical wills.

OBJECTIVES: Palliative care guidelines recommend an interdisciplinary approach to address patients' awareness of mortality and need for end-of-life preparation. An ethical will is a nonlegal way to address mortality by communicating a lasting and intangible legacy of values to others. The aim of this scoping review is to clarify the operationalization of ethical wills across disciplines and map the purposes and outcomes of creating an ethical will. METHODS: We followed the Joanna Briggs Institute methodology for scoping reviews. We searched 14 databases in November 2019 and January 2021 without filtering publication date or type. Two reviewers independently screened 1,948 publications. We extracted frequently used terms describing content, audience, format, purpose, and outcomes identified in ethical will creation. RESULTS: Fifty-one publications met inclusion criteria. Six (11.7%) were research articles. Twenty-four (47.1%) were lay literature published within law, estate, and financial planning. Collectively, our included studies defined an ethical will as a nonlegal way to express values, beliefs, life lessons and experiences, wisdom, love, history, hope for the future, blessings, apology, or forgiveness using any format (e.g., text, audio, video) that is meant to be shared with family, friends, or community. The most common purposes were to be remembered, address mortality, clarify life's meaning, and communicate what matters most. Creation provided opportunity to learn about self, served as a gift to both writer and recipient, and fostered generativity and sense of symbolic immortality. SIGNIFICANCE OF RESULTS: Our findings highlight interdisciplinary utilization and a lack of research of ethical wills. This review provides supportive evidence for ethical wills as a way for patients to address mortality, renew intergenerational connections, solidify self, and promote transcendence before their final days. Ethical wills have potential to be incorporated into interdisciplinary palliative care in the future to address psychological symptoms for patients anticipating the end of life.

Communication Disparities between Nursing Home Team Members.

Optimal care in nursing home (NH) settings requires effective team communication. Certified nursing assistants (CNAs) interact with nursing home residents frequently, but the extent to which CNAs feel their input is valued by other team members is not known. We conducted a cross-sectional study in which we administered a communication survey within 20 Utah nursing home facilities to 650 team members, including 124 nurses and 264 CNAs. Respondents used a 4-point scale to indicate the extent to which their input is valued by other team members when reporting their concerns about nursing home residents. We used a one-way ANOVA with a Bonferroni correction. When compared to nurses, CNAs felt less valued (CNA mean = 2.14, nurse mean = 3.24; p < 0.001) when reporting to physicians, and less valued (CNA mean = 1.66, nurse mean = 2.71; p < 0.001) when reporting to pharmacists. CNAs did not feel less valued than nurses (CNA mean = 3.43, nurse mean = 3.37; p = 0.25) when reporting to other nurses. Our findings demonstrate that CNAs feel their input is not valued outside of nursing, which could impact resident care. Additional research is needed to understand the reasons for this perception and to design educational interventions to improve the culture of communication in nursing home settings.

The Development and Validation of a Communication Survey Instrument for Long-term Care Staff.

Information transfers in long-term care (LTC) settings between and among providers, staff, residents, and family caregivers are often fragmented. In order to identify training needs to improve communication, a survey instrument was developed and refined to assess the self-efficacy of LTC staff in communicating with staff, providers, residents, and caregivers. This 11-item survey instrument, based on a literature review, covered four key concepts (mutual respect, recognizing and responding to sensory deficits, limited health literacy, and changes in condition) relevant to communicating health information in LTC settings. Ten content experts evaluated each survey item using a 4-point scale. The content validity of the survey was established by using the content validity index to assess results at the item and scale levels. All items scored 0.90 or greater and were retained. Future work should entail broad-scale validation and testing of this survey across the United States. By assessing the self-efficacy of LTC staff in communicating with the interprofessional team, leadership teams can design personalized interprofessional continuing education activities aimed at improving communication skills. [J Contin Educ Nurs. 2022;53(3):123-130.].

Me & My Wishes: Concordance of End-of-Life Preferences between Residents with Dementia, Family, and Staff.

Objective: Me & My Wishes involves videos of persons living with dementia talking about their end-of-life (EOL) care preferences. This study aimed to examine the concordance of EOL treatment and psychosocial preferences expressed by assisted living community and nursing home residents in these videos with family and staff knowledge of preferences. Design: Randomized wait-list control. Setting/Subjects: Assisted living and nursing home residents in the United States, and their family members and caregivers. Measurements: Five EOL treatment preferences (cardiopulmonary resuscitation or CPR, breathing machine, tube feeding, life support, and pain treatment) and four near EOL psychosocial preferences (having family at the bedside, engaging in faith practices such as prayer, having a pet at bedside, and engaging in activities such as being read to or listening to music) extracted from residents' videos and captured through family and staff surveys. Results: Thirty-six resident videos were shared with family (N = 50) and staff (N = 38) during care plan meetings. Concordance between residents' stated EOL treatment preferences and family and staff knowledge improved, with results showing a treatment effect at time of sharing the video (family: Beta = 0.21, p < 0.001; staff: Beta = 0.35, p < 0.001). Conclusion: Our findings indicate that sharing Me & My Wishes videos improved family and staff concordance of EOL psychosocial and treatment preferences for assisted living and nursing home residents living with dementia. Personalized videos conveying resident preferences can help informal and formal caregivers understand the resident as a person and foster concordant care. Clinical Trial Registration Number NCT03861429.

A Limited Opportunity: COVID-19 and Promotion of Advance Care Planning.

Background: Little is known about how COVID-19 has influenced the role of family caregivers in advance care planning (ACP). Objectives: To explore the experiences of family caregivers and ACP in the United States during the COVID-19 pandemic. Design: Exploratory sequential mixed-methods design of caregiver characteristics and pandemic response to ACP. Settings/Subjects: Family caregivers of care recipients with varied caregiving needs (dementia, mental illness, etc.). Measurements: Quantitative survey was done of fixed-choice questions of 82 caregivers. Semistructured qualitative telephone interviews were performed of a subsample of participants (n = 28). Results: Some (19%) of family caregivers revisited or updated advance directives of care recipients and/or had some type of contingency plan (33%) if they were to become ill. We identified three barriers caregivers faced during the pandemic that may have limited their engagement with ACP. Conclusions: Family caregivers need education regarding ACP and specific resources that can guide and support them through the process of ACP, for both themselves and care recipients.

Emotional expression in conversations about advance care planning among older adult home health patients and their caregivers.

OBJECTIVES: To examine patient and caregivers' differences in emotional expression and explore topics associated with emotional expression during advance care planning (ACP) discussions. METHODS: Older adult home health patient-caregiver dyads participated in video-recorded ACP conversations as part of a collaboration-focused intervention study. Recordings were coded in Noldus Observer XT, analyzed with descriptive statistics, Cochran-Mantel-Haenszel and Breslow-Day test, and integrated with qualitative content analysis. RESULTS: Eighteen patient-caregiver dyads were purposively recruited. Participants were mostly female (11 patients; 13 caregivers). Mean ages were 68.22 (SD = 9.64) for patients and 61.28 (SD = 13.60) for caregivers. Emotional expression (depth of emotion, positive and negative valence) was similar across patients and caregivers. Conversations centered on positive and negative decisional, relational, and existential topics. CONCLUSIONS: This study explored emotional expression and identified topics associated with emotion for patients and caregivers during collaborative ACP. Findings suggest that collaboration in ACP can have positive relational aspects for patient-caregiver dyads, while negative emotions can also be distressing. PRACTICE IMPLICATIONS: This study describes the range of emotions that are common during patient and caregiver ACP discussions. Clinical implications for the assessment of caregiver support and awareness of the interdependent nature of decision making is discussed.

Live hospice discharge: Experiences of families, and hospice staff.

OBJECTIVE: To examine live hospice discharge prevalence and experiences of families and hospice staff. Hospice eligibility is based on a cancer model where decline and death are predicable. Decline is less predictable for diagnoses such as dementia, frequently resulting in involuntary live hospice discharge. METHODS: A mixed-method integration of hospice 2013-17 admission/discharge data, 5 family interviews, hospice discipline-specific focus groups (3 aides, 2 nurses, 1 administrator interview) and a discipline-combined focus group (all 6 staff; each staff participant engaged in two data collection experiences). RESULTS: 5648 hospice admissions occurred between 2013-17; 795 patients experienced live discharge. The most prevalent admitting diagnosis was cancer, the most prevalent live discharge diagnosis was dementia. Family caregiver themes were Attitude and experience with hospice, Discharge experience, and Continued need/desire for hospice following discharge. Staff themes were Discharge circumstances, Regulatory guidelines, and Changing practice to meet regulatory guidelines. CONCLUSION: Involuntary live hospice discharge precludes patient-centered care due to policy constraints, especially for those with noncancer diagnoses. Families and staff noted the paradox of beneficial hospice care, yet this care resulted in ineligibility for continued hospice services. PRACTICE IMPLICATIONS: Transparent, patient-family-staff communication (including CNAs) facilitates hospice live discharge planning. Hospice service eligibility policy changes are needed.

"You Feel Very Isolated": Effects of COVID-19 Pandemic on Caregiver Social Connections.

One in five individuals in the United States provides care and support to ill, disabled, and aging family members in the home, leading to feelings of burden, stress, and poor health and well-being. Social support represents an important buffer for family caregivers that allows them to feel less isolated and more positive about their caregiving role. This sequential mixed-methods study aimed to examine the effect of the COVID-19 pandemic on family caregivers' social connections. Eighty-two caregivers completed a web-based survey which comprised of fixed-choice and open-ended questions. Survey data showed that the majority of caregivers (83%) reported an increase in stress and feeling lonely (77%) during the pandemic. Qualitative interviews with a subsample of caregivers (n=27) further explored social connections during the pandemic. Three themes echoed the quantitative findings and centered around defining boundaries, intentionality in social interactions, and loss of social resources. Although caregivers were often strained by new or increased caregiving demands, many experienced positive changes such as feeling a deeper connection with the care-recipient. Findings from this study highlight the need for further consideration of the impact of social isolation on the well-being of caregivers.

Evaluation of a Collaborative Advance Care Planning Intervention among Older Adult Home Health Patients and Their Caregivers.

Background: Caregivers are decision stakeholders; yet, few interventions have been developed to help patients and caregivers collaborate on advance care planning (ACP). Objective: To evaluate a theory-based ACP pilot intervention, Deciding Together, to improve decisional quality, readiness, collaboration, and concordance in ACP decisions for older adult home health (HH) patients and caregivers. Design: A one-group, pre- and posttest study using matched questionnaires was conducted. The intervention consisted of a clinical vignette, theoretically guided conversation prompts, and a shared decision-making activity. Setting/Subjects:N = 36 participants (n = 18 HH patients; n = 18 family and nonfamily caregivers) were purposively recruited from a HH agency to participate in the intervention at patients' homes. Measurements: Demographic and baseline measures were collected for relationship quality, health status, and previous ACP engagement. Outcome measures included perceptions of collaboration, readiness for ACP, concordance in life-sustaining treatment preferences (cardiopulmonary resuscitation, antibiotics, artificial nutrition and hydration, and mechanical ventilation), and decisional conflict. Descriptive statistics, Cohen's κ coefficients, paired t tests, McNemar's tests, and Wilcoxon signed-rank tests (and effect size estimates, r = z/√N) were calculated using R-3.5.1 (p < 0.05). Single value imputation was used for missing values. Results: While no significant differences were found for perceptions of collaboration, and readiness for ACP, patients (r = 0.38, p = 0.02) and caregivers (r = 0.38, p = 0.02) had reduced decisional conflict at posttest. Patients' and caregivers' agreement increased by 27.7% for an item assessing patients' preference for artificial nutrition and hydration (p = 0.03). Conclusions: This study suggests that collaborative ACP decision making may improve decisional conflict for older adult HH patients and their caregivers.

Piloting Me and My Wishes-Videos of Nursing Home Residents' Preferences.

CONTEXT: A key challenge in nursing homes (NHs) is how to attain and clarify resident preferences for care and then communicate these preferences to family members and staff. OBJECTIVES: We evaluated the feasibility and acceptability of Me & My Wishes-person-centered videos of residents discussing their preferences for daily and end-of-life (EOL) care. METHODS: For this descriptive study, Me & My Wishes videos were created with residents in three NHs in the Pacific Northwest. Feasibility was evaluated by tracking resident enrollment, completing and sharing their video, and conducting debriefing interviews to ascertain residents' impressions of the recording process and personalized conversation. After viewing the video, staff and family assessed communication quality via survey-the extent to which they perceived messages from the video (e.g., preferences for EOL) to be timely, accurate, adequate, complete, and credible and items on resident preferences for daily and EOL care. RESULTS: Twenty of 33 residents approached created videos; 18 of these residents shared their videos with family or staff. Residents reported that they liked the opportunity to express their wishes. On a scale of 1-7 (lower is better), mean ratings were 2.0 (family) and 1.3 (staff) for communicating preferences for daily care; 1.9 (family) and 1.2 (staff) for communicating preferences for EOL. Both family and staff reported increased knowledge about resident preferences for daily and EOL care. CONCLUSION: This research supports the feasibility and acceptability of a videotaping approach (Me & My Wishes) for viewing, listening, and discussing residents' preferences for daily and EOL care.

Conducting Clinical Research in Post-acute and Long-term Nursing Home Care Settings: Regulatory Challenges.

Despite multiple initiatives in post-acute and long-term nursing home care settings (NHs) to improve the quality of care while reducing health care costs, research in NHs can prove challenging. Extensive regulation for both research and NHs is designed to protect a highly vulnerable population but can be a deterrent to conducting research. This article outlines regulatory challenges faced by NHs and researchers, such as protecting resident privacy as well as health information and obtaining informed consent. The article provides lessons learned to help form mutually beneficial partnerships between researchers and NHs to conduct studies that grow and advance NH research initiatives and clinical care.

Me & My Wishes: Lessons Learned From Prototyping Resident Centered Videos About Care Preferences.

Me & My Wishes are facilitated, resident-centered video-recorded conversations to communicate current and end-of-life care preferences. We describe the video production process of two prototypes in the long-term care (LTC) setting and discuss lessons learned around developing this type of intervention. Partnering with an LTC community allowed us to create videos on-site, document staff time, handle any barriers with video production, and evaluate the process. In this article, we will describe the process of two residents creating Me & My Wishes videos. Both residents responded positively to viewing their edited video (about 20 min), saying the videos would be "good for family or staff to hear feelings about preferences." Staff members also responded positively to the videos. We discuss two key issues to consider: the possibility that resident preferences may change and the resources to produce and view videos.