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.

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.

Confirmatory factor analysis of the pain care quality surveys (PainCQ©).

OBJECTIVE: To examine the reliability and validity and to decrease the battery of items in the Pain Care Quality (PainCQ(©) ) Surveys. DATA SOURCES/STUDY SETTING: Patient-reported data were collected prospectively from 337 hospitalized adult patients with pain on medical/surgical oncology units in four hospitals in three states. STUDY DESIGN: This methodological study used a cross-sectional survey design. Each consenting patient completed two PainCQ(©) Surveys, the Brief Pain Inventory-Short Form, and demographic questions. Clinical data were extracted from the medical record. DATA COLLECTION/EXTRACTION METHODS: All data were double entered into a Microsoft Access database, cleaned, and then extracted into SPSS, AMOS, and Mplus for analysis. PRINCIPAL FINDINGS: Confirmatory factor analysis using Structural Equation Modeling supported the initial factor structure. Modification indices guided decisions that resulted in a superior, parsimonious model for the PainCQ-Interdisciplinary Care Survey (six items, two subscales) and the PainCQ-Nursing Care Survey (14 items, three subscales). Cronbach's alpha coefficients all exceeded .80. CONCLUSIONS: Cumulative evidence supports the reliability and validity of the companion PainCQ(©) Surveys in hospitalized patients with pain in the oncology setting. The tools may be relevant in both clinical research and quality improvement. Future research is recommended in other populations, settings, and with more diverse groups.

Initial Psychometric Properties of the Pain Care Quality Survey (PainCQ).

UNLABELLED: This study examined the psychometric properties of the Pain Care Quality (PainCQ) survey, a new instrument to measure the quality of nursing and interdisciplinary care related to pain management. Hospitalized medical/surgical oncology patients with pain from 3 states completed the 44-item version of the PainCQ survey following completion of a nursing shift. Interdisciplinary items were evaluated over the entire hospital stay; nursing care was evaluated during the previous shift. The sample included 109 patients ranging in age from 20 to 84 (mean = 53.09). The sample was 58.7% female, 88% non-Hispanic white. Principal Axis Factoring with an oblimin rotation was used as factors were correlated. Two scales resulted. The PainCQ-Interdisciplinary scale included 11 items representing 2 constructs and explaining 47.1% of shared item variance: partnership with the health care team (k = 6 items; α = .85) and comprehensive interdisciplinary pain care (k = 5 items; α = .76). The PainCQ-Nursing scale measured three constructs and explained 60.8 % of shared item variance: being treated right (k = 15 items; α = .95), comprehensive nursing pain care (k = 3 items; α = .77), and efficacy of pain management (k =4 items; α = .87). Results supported the internal consistency reliability and structural validity of the PainCQ survey with 33 items. PERSPECTIVE: This article presents the psychometric properties of a new tool to measure interdisciplinary and nursing care quality related to pain management from the patient's perspective. This tool can be used for research and as a clinical performance measure to monitor and improve quality of care and patient outcomes.

Measuring the quality of care related to pain management: a multiple-method approach to instrument development.

BACKGROUND: Research to document the effects of nursing on patient outcomes such as pain has been limited by the inability to measure the quality of nursing care effectively. OBJECTIVE: The purpose of this study was to establish content validity and to evaluate patient understanding of Pain Care Quality (PainCQ) survey items using cognitive interviewing. METHOD: In the development phase, 101 items representing four constructs were generated from the transcriptions of 33 qualitative interviews conducted with cancer patients in pain. In the judgment phase, items were reviewed systematically by two panels of pain experts. In the final phase, cognitive interviews were conducted with hospitalized cancer patients reporting pain. RESULTS: Content validity was established if eight of nine (p < .05) experts agreed the item was relevant or very relevant. On the basis of the expert panel review, items were deleted, reworded, and added, and 73 items remained. These items were evaluated by cognitive interviews with 39 hospitalized patients with multiple types of cancer in three states. The mean age was 58.87 years, and 60.5% were women. Most were non-Hispanic White (94.7%), and education varied. On a 0 to 10 scale, worst pain during the past shift averaged 5.24 (SD = 2.43). Participant responses to the PainCQ survey items were summarized for each item using a matrix tool and evaluated in team meetings. Through an iterative process, items were revised and reduced to produce the PainCQ survey (v3) with 44 items. DISCUSSION: Through this deliberative and iterative process, an instrument was produced that will contribute to the measurement of the quality of nursing and interdisciplinary care related to pain management. The items retained in the PainCQ were understood and judged by hospitalized patients with pain easily. Further psychometric testing of the PainCQ is indicated.

Core aspects of satisfaction with pain management: cancer patients' perspectives.

CONTEXT: The coexistence of high levels of satisfaction and high levels of pain has been perplexing. OBJECTIVES: The aims of this study were to 1) describe patient expectations related to the experience of cancer-related pain, 2) explore the cognitive processes and meaning that underlie patient judgments about satisfaction and dissatisfaction with pain management, and 3) explore the discrepancies between ratings of high satisfaction with pain management with high pain intensity. METHODS: The sample included 33 patients: 18 with advanced cancer and 15 experiencing pain after a surgery for a cancer diagnosis. All patients had experienced "worst pain" of at least moderate intensity and were interviewed using standard pain measures from the American Pain Society Patient Outcome Questionnaire and open-ended questions about the underlying meaning of their answers. We systematically analyzed the transcribed qualitative data using NVivo software. RESULTS: Fifty-five percent of patients were females and were aged 25-78 years. Most (75%) were satisfied or very satisfied with their overall pain management. Key findings indicate that for some, the worst pain rating was often brief, even momentary. Most patients expected pain relief. Four key themes were important to the quality of pain management: being treated right, having a safety net, being in a partnership with their health care team, and having pain treatment that was efficacious. Key aspects of the patient-provider relationship that mattered were how the nurses and doctors behaved toward them and how quickly they responded to reports of pain. For some, an important factor was whether they had control of the amount of pain they experienced. CONCLUSION: The findings inform measurement of patient satisfaction with the quality of pain management.

Symptom experiences and quality of life of rural and urban older adult cancer survivors.

This study examined the symptom experience, health-related quality of life, and functional performance of elderly cancer survivors at 1 and 3 months after the completion of initial treatment. The study used a descriptive, comparative, repeated-measures design. A mixed-methods approach combined completion of survey instruments with qualitative interviews. Of the 52 participants, 22 resided in rural (n = 12) or semirural (n = 10) areas and 30 lived in urban settings. There were 23 women and 29 men ranging in age from 65 to 81 years (mean age, 71.53 years). Survivors experienced a significant number of symptoms (mean, 4.58), which were, on average, moderate in intensity and did not differ based on urban or rural residence. The Medical Outcomes Study SF-12 Physical Component Summary was less than the national norm for elderly individuals or those with a chronic disease. There was minimal improvement 3 months after treatment. Elderly survivors, regardless of whether they were rural or urban, experienced a significant number of unrelieved symptoms, including fatigue, pain, and difficulty sleeping. Eighty-eight percent had other chronic diseases. Comorbidities were associated with greater symptom intensity and less physical health status. Survivorship care for elderly adults should include a comprehensive geriatric assessment and tailored strategies for symptom management.