Tools for tomorrow: a scoping review of patient-facing tools for advance care planning.

Advance care planning (ACP) supports individuals in aligning their medical care with personal values and preferences in the face of serious illness. The variety of ACP tools available reflects diverse strategies intended to facilitate these critical conversations, yet evaluations of their effectiveness often show mixed results. Following the Arskey and O'Malley framework, this scoping review aims to synthesize the range of ACP tools targeted at patients and families, highlighting their characteristics and delivery methods to better understand their impact and development over time. Studies included focused on patient-facing ACP tools across all settings and mediums. Exclusions were applied to studies solely targeting healthcare providers or those only aiming at completion of advance directives without broader ACP discussions. Searches were conducted across PubMed, Embase, CINAHL, The Cochrane Library, and Web of Science. Data were extracted using a predesigned spreadsheet, capturing study population, setting, intervention modality, and intervention theme. Tools were categorized by delivery method and further analyzed through a year-wise distribution to track trends and developments. We identified 99 unique patient-facing tools, with those focusing on counseling (31) and video technologies (21) being the most prevalent while others incorporated online platforms, print materials, games, or some combination of different delivery methods. Over half the tools were designed for specific patient groups, especially for various diseases and racial or ethnic communities. Recent years showed a surge in tool variety and innovation, including integrated patient portals and psychological techniques. The review demonstrates a broad array of innovative ACP tools that facilitate personalized and effective ACP. Our findings contribute to an enhanced understanding of their utilization and potential impacts, offering valuable insights for future tool development and policy making in ACP.

Scanning the landscape of tools to assist patients with advance care planning This review investigates the variety of tools, programs, and interventions designed to help patients plan their healthcare in advance, a process known as advance care planning (ACP). ACP is crucial because it ensures individuals receive medical care aligned with their wishes, especially during serious illness or near the end of life. Our study gathered information from various sources, focusing on tools aimed directly at patients and their families. We found 99 unique tools that assist in ACP, including individual counseling sessions, video-based tools, and digital platforms. Some tools are designed specifically for certain patient groups, such as those with particular diseases or belonging to diverse racial and ethnic communities. Our review highlights the recent surge in the variety and innovation of these tools, such as integrated patient portals and methods incorporating psychological techniques, suggesting a growing effort to make ACP more accessible and tailored to individual needs. However, despite this variety, more research is needed to understand how these tools impact healthcare outcomes and how they can be effectively implemented in different care settings. Our findings aim to guide future development of ACP tools, improve their integration into healthcare practices, and ensure they meet the diverse needs of patients and families.

Dyadic Hair Cortisol Self-Collection Procedure.

BACKGROUND: At-home self-collection of specimens has become more commonplace because of measures taken in response to the coronavirus pandemic. Self-collection of hair cortisol is important because chronic stress is present in many populations, such as older adults living with Alzheimer's disease and their family caregivers. For the evaluation of chronic stress, scalp hair can be used as a predictive biomarker because it examines the cumulative, retrospective stress from previous months. OBJECTIVES: The aim of the paper is to provide a study procedure for at-home, scalp hair self-collection for cortisol concentration analysis from dyads consisting of a person living with Alzheimer's disease and their family caregiver. METHODS: After informed electronic consent is obtained, a package containing the necessary tools for self-collection of hair samples from the dyad is mailed to the participant's home. Participants are provided detailed print and video multimedia guides outlining how to obtain the hair samples. Ideally, the hair samples are obtained during the virtual data collection meeting with research personnel. Participants mail back the hair sample in a prepaid package to the biomedical laboratory for analysis. DISCUSSION: At-home, self-collection of hair provides potential advantages such as reduced participant burden, especially for vulnerable populations where transportation and different environments are challenging. At-home sample collection options may increase research participation and can be applied to multiple research foci. Research considerations for dyads, such as people living with Alzheimer's disease and their caregivers, are discussed.

Hospice Transitions From the Perspective of the Caregiver: A Qualitative Study and Development of a Preliminary Hospice Transition Checklist.

Background: Relative to curative and traditional care delivery, hospice care has been associated with superior end of life (EOL) outcomes for both patient and caregiver. Still, comprehensive orientation and caregiver preparation for the transition to hospice is variable and often inadequate. From the perspective of the caregiver, it is unclear what information would better prepare them to support the transition of their loved one to hospice. Objectives: Our two sequential objectives were: 1) Explore caregivers' experiences and perceptions on the transition of their loved one to hospice; and 2) Develop a preliminary checklist of considerations for a successful transition. Design: We conducted semi-structured interviews and used a descriptive inductive/deductive thematic analysis to identify themes. Subjects: 19 adult caregivers of patients across the United States who had enrolled in hospice and died in the year prior (January - December 2019). Measurements: An interview guide was iteratively developed based on prior literature and expanded through collaborative coding and group discussion. Results: Four key themes for inclusion in our framework emerged: hospice intake, preparedness, burden of care and hospice resources. Conclusions: Focusing on elements of our preliminary checklist, such as educating families on goals of hospice or offering opportunities for respite care, into the orientation procedures may be opportunities to improve satisfaction with the transition and the entirety of the hospice experience. Future directions include testing the effectiveness of the checklist and adapting for expanded poputlations.

Promoting successful participation of people living with Alzheimer's disease and related dementias in pain-related neuroimaging research studies.

Recruitment and retention of participants for pain-related neuroimaging research is challenging and becomes increasingly so when research participants have a diagnosis of Alzheimer's disease and related dementias (ADRD). This article shares the authors' recommendations from several years of successful recruitment and completion of pain-related neuroimaging studies of people living with ADRD and includes supportive literature. While not an exhaustive list, this review covers several topics related to recruitment and retention of participants living with ADRD, including community engagement, capacity to consent, dementia diagnostic criteria, pain medication and other study exclusion criteria, participant and caregiver burden, communication concerns, and relationships with neuroimaging facilities. Threaded throughout the paper are important cultural considerations. Additionally, we discuss implications of the coronavirus (COVID-19) pandemic for recruitment. Once tailored to specific research study protocols, these proven strategies may assist researchers with successfully recruiting and retaining participants living with ADRD for pain-related neuroimaging research studies toward improving overall health outcomes.

Challenges to dietary hypertension self-management as described by a sample of African American older adults.

BACKGROUND: Hypertension rates are disproportionately higher among Black or African Americans (Black/African American) compared to other racial and ethnic groups in the United States. However, research on self-management strategies to control hypertension through healthy eating such as the Dietary Approaches to Stop Hypertension (DASH), and ketogenic diets has underexplored the use of dietary strategies among older Black/African American adults. In reporting contemporary challenges with implementing dietary strategies targeting blood pressure control among Black/African American older adults living with hypertension, this study addresses a clear need. AIMS: Prior research has only partially addressed the challenges older Black/African Americans face in implementing and maintaining dietary strategies to control hypertension, therefore the current study aimed to address this gap by reporting contemporary challenges, as reported by a sample of Black/African American older adults living with hypertension. METHODS: Nineteen Black/African American older adults living with hypertension participated in a focus group. An interview guide with open-ended questions on dietary approaches to self-management hypertension was used to guide data collection. Responses were audio-recorded, transcribed verbatim, and interpreted using qualitative thematic analysis. RESULTS: Study participants were 71.6 years (SD = 8.3), 87.1% were women, and all were self-identified as Black/African American. Overall, participants shared that they were interested in improving their hypertension self-management skills. They expressed uncertainty about dietary strategies related in part to a lack of knowledge about incorporating or excluding certain foods and adhering to complex dietary recommendations. Participants also related financial concerns about accessing the recommended foods to control hypertension and expressed confusion about how to manage hypertension alongside other comorbidities. LINKING EVIDENCE TO ACTION: This study highlights several barriers that Black/African American older adults face (lack of dietary knowledge, lack of financial resources, and unique barriers to managing multiple comorbid health conditions), which often pose simultaneous and intersecting barriers to managing hypertension using existing evidence-based dietary strategies.

Co-created health education intervention among older African American women living with hypertension.

INTRODUCTION: African Americans over the age of 60 years face disproportionate risk of developing hypertension, which can be mitigated with lifestyle changes. This study examines the acceptability and cost of a patient-centered, co-created health education intervention with older African Americans living with hypertension. METHODS: Twenty women participated in this study that included four weekly, two-hour group sessions centered on hypertension knowledge and calibration of home blood pressure monitors, stress and interpersonal relationship management, sleep and pain management, and healthy eating. The study took place in the Midwest United States. RESULTS: Descriptive statistics were used to analyze acceptability data that included attendance and a brief investigator-generated questionnaire. Twenty women were enrolled. Sixteen participants attended all four sessions, all reported they intended to continue using the intervention and felt it fit within their culture, routine, and self-care practices. The estimated cost of conducting the intervention was $227.00 (U.S. dollars) per participant. CONCLUSIONS: The co-created health education intervention was acceptable. Given the dire need for cost-effective interventions to improve the adoption of health promoting self-care management behavior, to reduce the prevalence of hypertension in African Americans, the results of this study have implications for future research and practice.

Treating the most vulnerable: A discursive review of experimental pain in Alzheimer's disease.

AIM: The purpose of this manuscript is to summarize research on how experimental pain is experienced by adults with Alzheimer's disease (AD) and to translate results into implications for nurses. DESIGN: This discursive review synthesizes the results of three previous research studies exploring experimental pain in adults with AD. METHODS: Using a series of fictional clinical vignettes, the authors discuss how the results from three previous papers using acute experimental pain can potentially be translated into clinical practice. The authors also introduce the reader to the concept of research-related psychophysics using introductory definitions and concepts with the impetus to encourage other nurses to consider this research methodology. RESULTS: Pain characteristics in AD that differ from cognitively intact controls must be explored to properly address pain in this population. Nurses are well positioned to address these issues in order to provide a high quality of care to adults with AD.

A Cross-Sectional Study of Pain Sensitivity and Unpleasantness in People with Vascular Dementia.

OBJECTIVE: Advanced age is associated with a higher risk of both pain and dementia, with many studies finding that dementia often heightens sensitivity to pain. Vascular dementia (VaD) is the second most common type of dementia. Only a few observational or retrospective studies have examined pain responsiveness in VaD, suggesting that it could increase pain unpleasantness (i.e., pain affect). This study compared thermal pain psychophysics between a cohort of patients with VaD and healthy control (HC) subjects. DESIGN: Single-center, cross-sectional, between-subjects design. SUBJECTS: Verbally communicative patients with probable VaD (n = 23) and age- and sex-matched HCs (n = 23). METHODS: A thermal psychophysics protocol assessed "mild pain" and "moderate pain" thresholds (temperature in degrees Celsius) and associated unpleasantness ratings (0-20 scale) in both the VaD and HC groups. Psychophysics were compared between groups by way of a mixed-effects analysis, controlling for depressive symptoms. RESULTS: There were no significant differences between groups for pain thresholds (main effect P = 0.086, Cohen's d: mild = 0.55, moderate = 0.27). However, unpleasantness ratings were higher in the VaD group than in the HC group (main effect P = 0.003; mild pain P = 0.022, Cohen's d = 0.79; moderate pain P = 0.057, Cohen's d = 0.6). CONCLUSIONS: These results are consistent with prior observational findings suggesting that VaD could make patients more susceptible to pain, particularly its affective component.

Cultural Humility: Retraining and Retooling Nurses to Provide Equitable Cancer Care.

BACKGROUND: Cancer outcome disparities exist among Black, Indigenous, and people of color despite advancements in screening, detection, and treatment. In addition to racial and ethnic diversity, the U.S. population is experiencing shifts in sociodemographics, including a growing aging population, sex and gender identities, spiritual and religious belief systems, and divides between high- and low-income households. OBJECTIVES: This article provides a foundation for cultural humility as a clinical competency in nursing to improve the quality of cancer care. METHODS: CINAHL®, PubMed®, Google Scholar, and grey literature were searched using keywords, including cultural humility, cultural competence, nursing, nursing pipeline, nursing workforce, and health. FINDINGS: Retraining and retooling the nursing workforce promotes multiculturalism in oncology care and increases opportunities to provide more appropriate, patient-centered care to those living with cancer. Increasing the diversity of nursing faculty and staff, enhancing nursing curricula and education, and creating equitable relationships to support patient-centered care are initiatives to ensure high-quality care.

Experimentally evoked pain in Alzheimer's disease.

BACKGROUND: Pain continues to be underrecognized and undertreated in Alzheimer's disease (AD) while existing guidance about pain assessment and management in dementia is not widespread. Brain regions involved in pain processing and modulation are damaged during AD, and the pain experience in AD is not well understood. Experimental pain studies using psychophysics can further our understanding of the pain experience in AD, which may lead to improved assessment and management of pain in people living with AD. OBJECTIVE: A systematic review was conducted to explicate the current understanding of experimentally evoked pain in AD from primary research using psychophysical methods. DATA SOURCES: Peer-reviewed publications were found via PubMed, CINAHL, and PsycINFO. A total of 18 primary research, peer-reviewed full articles that met inclusion criteria were included, representing 929 total participants. CONCLUSIONS: Experimentally evoked pain in people with AD demonstrates that despite cognitive impairment and a reduced ability to effectively communicate, individuals with AD experience pain similar to or more unpleasant than cognitively intact older adults. This may mean amplified pain unpleasantness in people with AD. IMPLICATIONS FOR PRACTICE: Our current best practices need to be widely disseminated and put into clinical practice. Self-report of pain continues to be the gold standard, but it is ineffective for noncommunicative patients and those unable to understand pain scales or instructions because of memory/cognitive impairment. Instead, pain treatment should be ethically initiated based on patient reports and behaviors, caregiver/surrogate reports, review of the medical record for painful conditions, analgesic trials, and regular reassessments.

Hospital Admissions Associated With Cancer Pain in Older Adults With and Without Dementia.

BACKGROUND: Neoplasm-related pain is often suboptimally treated, contributing to avoidable suffering and increased medical resource use and costs. We hypothesized that dementia may contribute to increased resource use and costs in patients hospitalized for neoplasm-related pain in the United States. AIMS: To examine how persons with cancer and dementia use medical resources and expenditures in US hospitals compared to ondividuals without dementia. DESIGN: This study examined a retrospective cohort. SETTING: Admissions to US hospitals for neoplasm-related pain from 2012-2016 PARTICIPANTS/SUBJECTS: METHODS: Data were obtained from the 2012-2016 National Inpatient Sample (NIS). The sample included hospital admissions of individuals aged 60 or older with a primary diagnosis of neoplasm-related pain. Dementia was defined using the International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM), and ICD-10-CM diagnosis codes. Primary outcomes were number of admissions, costs, and length of stay (LOS). Descriptive statistics and multivariable regression models were used to examine the relationships among dementia, costs, and LOS. RESULTS: Of 12,034 admissions for neoplasm-related pain, 136 (1.1%) included a diagnosis of dementia and 11,898 (98.9%) did not. Constipation was present in 13.2% and 24.5% of dementia and nondementia admissions, respectively. The median LOS was 4 days in persons with dementia and three in those without. Mean costs per admission were higher in persons without dementia ($10,736 vs. $9,022, p = .0304). In adjusted regression results, increased costs were associated with nonelective admissions and longer LOS, and decreased costs with age above the mean. In contrast, decreased LOS was associated with age above the mean and nonelective admissions. Dementia was associated with neither endpoint. CONCLUSION: This study provides nurses and other health care professionals with data to further explore opportunities for improvement in cancer pain management in patients with and without dementia that may optimize use of medical resources.

Determining the impact of age and sex on the psychophysical and neurophysiological response to thermal pain across the adult lifespan.

AIMS: Determine sex- and age-associated psychophysical and neurophysiological differences in the processing of pain across the adult lifespan. DESIGN: Preliminary, exploratory, cross-sectional study. METHODS: Using psychophysics (to measure intensity and unpleasantness) and functional magnetic resonance imaging blood oxygenation level dependent methods (to measure stimulus-evoked brain activation), we will examine sex- and age-associated differences in thermal pain processing and their underlying neurophysiology in a broad range of healthy adults (ages 30-89). We will acquire resting state functional connectivity data for secondary analyses exploring whether resting state connectivity predicts psychophysical and neurophysiological responses to thermal pain. To examine the effects of altered blood flow, we will acquire resting-state arterial spin labeling magnetic resonance imaging data to quantify resting cerebral blood flow. We will interpret findings in the context of a proposed neural model of pain, ageing, and sex. Study funding was received in June of 2014. Ethical approval was obtained from the Vanderbilt University IRB prior to study initiation. CONCLUSION: Exploring the biological reasons for age- and sex-associated differences in pain processing will increase our understanding of pain in older adults. The paucity of neurobiological evidence to support best practice pain management in older adults places these individuals at risk for poor pain management. IMPACT: Poorly treated pain in older adults is a critical public health problem associated with a poor quality of life and increased healthcare costs. Understanding how age and sex have an impact on central processing of pain across the lifespan is a critical step toward improving personalized pain medicine.

Race-Related Differences Between and Within Sex to Experimental Thermal Pain in Middle and Older Adulthood: An Exploratory Pilot Analysis.

This brief report details a pilot analysis conducted to explore racial differences in pain sensitivity and unpleasantness between cognitively healthy Black and White adults, stratified by sex. A total of 24 cognitively healthy adults (12 Black and 12 White) from two completed studies were matched by age and sex, and divided into two groups based on race. Stratified analyses by sex demonstrated that Black females reported experiencing pain intensity ratings of all three intensity sensations at lower temperatures than White females. These findings will inform future research studies to determine if these results hold true in a fully-powered sample and should include mixed methodologies, incorporating neuroimaging data to further assess this phenomenon. Improving pain assessment and management across racial/ethnic groups will help healthcare providers such as nurses and physicians to ensure optimal quality of life for all.

Understanding of Health-related Decision-making Terminology Among Cancer Caregivers.

Research on understanding health-related decision-making terminology among family caregivers of adults living with advanced cancer is lacking. The purpose of this study was to examine interpretations of the meaning of health-related decision-making terminology such as quality-of-life and end-of-life among caregivers of adults living with advanced cancer as a basis for improved understanding of caregiver decision support needs. Interviews were conducted with a purposive sub-sample of 10 caregivers of adults diagnosed with advanced cancer who completed a longitudinal, descriptive study (NRO14856) of factors influencing cancer care decisions. Audio transcripts were analyzed using qualitative descriptive methods. Caregivers described interpretations of the meaning and process of decision-making and decision-related distress. Caregivers were uncertain about the meaning of end-of-life-related terminology, and a placed high value on quality-of-life and faith/spirituality in the decision-making process. Improvements in information and decision support interventions are needed to better support caregivers and subsequently patients towards informed cancer care decisions.

Missing the Mark: The Complexity of African American Dementia Family Caregiving.

Alzheimer's disease and related dementias (ADRDs) have a significant impact on families. Family nurses are in an ideal position to address the needs of families affected by ADRD. However, to be most effective, family nurses and researchers need culturally appropriate theories to guide practice and research. On November 17, 2018, five nurse researchers presented findings of their research with African American families at the Gerontological Society of America's annual meeting. The results reported and the lively discussion that ensued suggested that the current paradigms framing research and practice with African American families affected by ADRD may not be adequate. There is a need to consider culturally congruent, family-centered theories to guide research and practice with this population of families.

On Best Interests: A Case for Clinical Ethics Consultation.

Surrogate health care decision making is often a challenge for everyone involved. In the case of incapacitated patients, family members, nurses, health care providers, and other members of the health care team often grapple with determining the most appropriate clinical course of action. For these difficult patient scenarios, the expertise of clinical ethics consultants is sought to assist with complex health care decision making. Clinical ethics consultation is designed to provide a more objective "outside" opinion and offer advice to the patient, family, and entire care team to support and guide decisions. Nurses are well positioned to initiate assistance from Clinical Ethics Consult Services in support of patient and family advocacy. This article presents a case analysis based on the Stakeholder, Facts, Norms, and Options Framework to analyze the best interest course of action for Mr K., a patient diagnosed with abdominal pain due to end-stage liver cirrhosis and who lacks decisional capacity in regard to his own treatment decision making. The case analysis highlights specific examples of how nurses can provide information, facilitate discussion, and otherwise support patients and families to achieve best interest outcomes.

Family Surrogate Decision-making in Chronic Critical Illness: A Qualitative Analysis.

BACKGROUND: Caring for an adult with chronic critical illness is a difficult undertaking. Family surrogates are tasked with decision-making on behalf of their loved one, particularly during acute-on-chronic illness episodes. Critical care nurses are well positioned and well qualified to facilitate this process. OBJECTIVES: To explore family surrogate decision-making for people with chronic critical illness. METHODS: In this qualitative study, interviews were conducted with family surrogates (n = 7) as part of a larger descriptive, longitudinal study (N = 264). Content analyses were guided by Miles and colleagues' methods of data analysis. RESULTS: Family surrogates serving as decision makers for a spouse or another adult loved one were mostly female. Although decision-making was often described as "frustrating," most surrogates reported that they were "comfortable" with this role. Major decision-making themes were "communication as key in decision-making," "impact of past experiences," and "difficulties and coping." Advice from family and friends, health care providers (such as nurses), and faith or spirituality were significant resources for coping with decision-making challenges. CONCLUSIONS: Results support recent recommendations of the National Academy of Medicine that endorsed shared decision-making. Data also support development of more effective team communication and decision support strategies, particularly addressing consistency and continuity. Critical care nurses can use their expertise to positively influence these outcomes.

Transformation of the Doctor-Patient Relationship: Big Data, Accountable Care, and Predictive Health Analytics.

The medical profession is steeped in traditions that guide its practice. These traditions were developed to preserve the well-being of patients. Transformations in science, technology, and society, while maintaining a self-governance structure that drives the goal of care provision, have remained hallmarks of the profession. The purpose of this paper is to examine ethical challenges in health care as it relates to Big Data, Accountable Care Organizations, and Health Care Predictive Analytics using the principles of biomedical ethics laid out by Beauchamp and Childress (autonomy, beneficence, non-maleficence, and justice). Among these are the use of Electronic Health Records within stipulations of the Health Insurance Portability and Accountability Act. Clinicians are well-positioned to impact health policy development to address ethical issues associated with the use of Big Data, Accountable Care, and Health Care Predictive Analytics as we work to transform the doctor-patient relationship towards improving population health outcomes and creating a healthier society.