Palliating Serious Illness During Disasters and Public Health Emergencies.

ABSTRACT: The increase in disasters and public health emergencies in recent years is a serious public health concern. The needs of suffering victims can be multifaceted, particularly the needs of those who are from systematically marginalized populations. Palliative care nurses play a vital role in mitigating the suffering of those affected by these events. Despite the acute need, there is a lack of nurses who specialize in hospice and palliative care and generalist nurses are not sufficiently prepared to provide palliative care during disasters and public health emergencies. Nurses and nursing students should use national and global resources and training opportunities to hone their palliative care skills as well as learn self-care skills to increase their resiliency. Outcomes from research and collaborative efforts should be used to educate the future nursing workforce and advocate for equitable delivery of quality palliative care for all people who are affected by disasters and public health emergencies.

The Impact of Rapidly Progressing Neurodegenerative Disorders on Caregivers: An Integrative Literature Review.

Neurodegenerative disorders affect over 6 million people in the United States. A subset of these patients experiences symptoms that progress rapidly, along with a 5- to 10-year life expectancy (amyotrophic lateral sclerosis). This subgroup often becomes dependent on family caregivers. Managing care demands at the end of life that are brought on by rapid disease progression has a negative impact on caregiver quality of life. The purpose of this integrative review is to highlight the gaps in the existing body of research on the effect of neuropalliative care on quality of life of this caregiver population. A total of 13 articles met inclusion criteria and were selected for review. The most frequently occurring themes and findings in the literature shed light on neuropalliative care and provided some insight into both caregivers and patients' perspective at the end of life. What sets this population apart from caregivers and patients of other terminal diseases is the nature of disease progression and the rapid life adjustments that come along with it. Integration of neuropalliative has shown to provide additional support for caregivers and patients; however, it remains underused. To promote equitable access to these services, it is necessary to address several structural barriers.

A study protocol for e-PainSupport: The use of a digital application for reporting pain and pain management in home hospice.

High pain intensity is commonly experienced by patients with serious advanced illness. Impediments to improving pain intensity in home hospice include poor adherence to a pain management regimen due to caregivers' lack of knowledge and self-efficacy (confidence) in administering analgesics. e-PainSupport is a self-administered, digital application directly linked to patients' medical records. It has three elements: Education Module, Patient Pain Record, and the Pain Summary for Nurses. This study will test the effects of e-PainSupport on pain intensity when used by patients, caregivers, and nurses. The study's specific aims are as follows: Aim 1, compare the effects of e-PainSupport to a standard care condition, controlling for covariates (role [patient or caregiver], age, sex, ethnicity, education, and patient's diagnosis), on clinical improvement in pain intensity (primary outcome) and significant improvement on a pain intensity scale (secondary outcome); Aim 2, examine the mediating effects of patient and caregiver knowledge, self-efficacy, and adherence on change in pain intensity during 2 weeks, controlling for covariates and treatment condition; and Aim 3, identify nurses' perceptions of the use of e-PainSupport, including facilitators for and barriers to integration into agency workflow and benefits for patients. Participants (132 triads of patients, caregivers, and hospice nurses) will be recruited from Midwest hospice agencies. Patient and caregiver outcomes will be assessed at baseline and 2 weeks later. Data will be analyzed with multilevel modeling. Post-intervention, semi-structured interviews with nurses in the e-PainSupport condition will be analyzed using qualitative content analysis to identify perceived practice changes. e-PainSupport has the potential to facilitate nurse-patient communication and improve hospice patient pain management.

e-PainSupport: A Digital Pain Management Application for Home Hospice Care.

e-PainSupport is a digital pain management application (app) designed to facilitate better pain management in hospice. Early testing revealed caregivers found it was easy to use and successful in communicating patient pain and caregiver administration of analgesics to hospice nurses. However, caregiver knowledge of analgesic management remained low. The purpose of this study was to enhance e-PainSupport by (a) adapting and integrating an evidence-based pain educational intervention; (b) increasing ease of accessing and navigating the app; and (c) facilitating app communication with agency electronic health records (EHRs). An advisory board method, including two key stakeholder groups (an expert panel and a caregiver advisory board), guided the adaptation of an evidence-based pain educational intervention. Further, stakeholders recommended format changes to increase app usability. Study staff worked with four hospice agencies to facilitate app communication with EHRs. While modification to the e-PainSupport app to integrate a pain educational intervention and facilitate usability was successful, EHR integration was challenging. Future evaluation is needed to evaluate the effects of e-PainSupport on pain intensity among home hospice patients.

Experiences of Using Patient Decision Aids for Decisions About Cancer Treatment: A Meta-Aggregation of Qualitative Studies.

BACKGROUND: Inconsistent results have been found regarding the effects of patient decision aids (PtDAs) in supporting patients' decision-making for cancer treatment. OBJECTIVE: This qualitative meta-aggregation presents the experiences of using PtDAs, as perceived by adult patients with cancer, and highlights the components they perceived as important. METHODS: We used the 3-phase process for meta-aggregation suggested by Joanna Briggs Institute to identify published studies with qualitative evidence from CINAHL, Ovid-MEDLINE, APA PsycINFO, and EMBASE databases. The selected studies involved adults with various cancer diagnoses. The phenomenon of interest and the context for this review were people's experiences of using PtDAs for decisions about first-line cancer treatment. RESULTS: A total of 16 studies were included. The authors achieved consensus on 5 synthesized findings about PtDAs: (1) improved understanding of treatment options and patient values and preferences; (2) served as platforms for expressing concerns, obtaining support, and having meaningful conversations with healthcare providers; (3) facilitated active personal and family engagement in decision-making; (4) enabled recall of information and evaluation of satisfaction with decisions; and (5) presented potential structural barriers. CONCLUSIONS: This study used qualitative evidence to demonstrate the usefulness of PtDAs and identify aspects patients with cancer find particularly beneficial. IMPLICATIONS FOR PRACTICE: Nurses play a crucial role in supporting patients and family caregivers throughout the decision-making process for cancer treatment. Patient decision aids that balance complex treatment information with simple language and illustrations or graphs can enhance patients' comprehension. The integration of values clarification exercises into care can further improve patients' decisional outcomes.

Evaluation of the Nurse Practitioner Offsite Model.

Rural older adults residing in assisted living (AL) (herein referred to as residents) have limited access to health care for urgent and chronic management of diseases. The current project aimed to assess rural residents, families, and staff satisfaction with the Nurse Practitioner (NP) Offsite Visit Program. Residents and their families were asked to complete the NP Satisfaction Survey. The survey comprised three subscales (satisfaction, communication, and accessibility) and measured residents' and families' satisfaction. AL staff attended a 1-hour focus interview. Mean survey scores were 81.5 for satisfaction, 26.4 for communication, and 16.9 for accessibility subscales. Focus interview themes included Care Coordination, Prevention of Acute Care Utilization, and Access to Care. Findings suggest that residents, families, and site staff believe the NP Offsite Visit Program was beneficial and improved care coordination between residents and the provider team. The next step is to evaluate the program's impact on residents' health outcomes and further evaluate the Offsite team membership. [Journal of Gerontological Nursing, 49(7), 25-30.].

The 2023-2026 Hospice and Palliative Nurses Association Research Agenda.

The Hospice and Palliative Nursing Association established the triannual research agenda to ( a ) provide focus for researchers to conduct meaningful scientific and quality improvement initiatives and inform evidence-based practice, ( b ) guide organizational funding, and ( c ) illustrate to other stakeholders the importance of nursing research foci. HPNA Research Agendas are developed to give direction for future research to continue advancing expert care in serious illness and ensure equitable delivery of hospice and palliative care.

Mental Health of Older Adults at the End of Life.

With advanced age, older adults (aged ≥65 years) become increasingly aware of the finality of their lives and many accept death as an unavoidable universal event. Over the past few decades, end-of-life treatment preferences shifted in the United States toward hospice and palliative care over curative treatment, with the ultimate goal of facilitating a good death. In addition to physical comfort, emotional well-being is essential in older adults at the end of life. Despite high prevalence of depression, patients on hospice are rarely screened for depressive symptoms. Left untreated, depression increases the risk for complicated grief and suicide. Provider education and training are needed to facilitate early detection of symptoms and timely treatment for depression and grief at the end of life. Family caregivers should also be included in mental health support, as they care for their loved ones and beyond, including post-death bereavement support. [Journal of Psychosocial Nursing and Mental Health Services, 61(1), 12-15.].

The Impact of an Education Intervention to Improve Blood Pressure Control among Black Non-Hispanic Patients and Hispanic Patients with Chronic Kidney Disease.

This project examined the effect of an educational intervention on blood pressure control among minority patients with chronic kidney disease (CKD). Adherence to a low-sodium diet is crucial for blood pressure control. It is also vital to assess food insecurity to improve diet adherence, especially among high-risk underrepresented populations. Participants were recruited from a public hospital renal clinic. Knowledge and food access was assessed using CKD and food insecurity questionnaires. Food frequency and 24-hour 3-day food diaries were completed and analyzed. Eighteen patients were enrolled (Black, non-Hispanic = 66.6%, Hispanic = 27.7%, uninsured = 33.3%, and Medicaid recipients = 27.7%). Eighty-nine percent of participants screened positive for food insecurity and received vouchers for healthy food from a food depository. Paired t tests showed statistically significant increase in knowledge (p < 0.00) and self-efficacy, and systolic blood pressure improved post-intervention. This study suggests that Black non-Hispanic and Hispanic patients with CKD have limited access to healthy food and consume higher sodium. Patient education, screening for food insecurity, and access to a food depository enhanced adherence to low sodium diet and improved blood pressure control.

A review of clinical trials of advance care planning interventions adapted for limited health literacy.

OBJECTIVES: Advance care planning is vital for ensuring individuals receive end-of-life care that is consistent with their care preferences and improves patient quality of life and satisfaction with care; however, only 11% of Americans have discussed advance care planning with a healthcare provider. Individuals with limited health literacy are even less likely to participate in advance care planning due to difficulty comprehending complex health information. The purpose of this review was to identify randomized controlled trials designed to address the effects of limited health literacy on advance care planning, evaluate the quality of these studies, and summarize evaluation data to inform future studies. METHODS: This systematic review examined randomized controlled trials published from January 1997 to July 2020 using the PubMed, CINAHL, PsycINFO, and Scopus databases. Data were extracted and two reviewers independently evaluated the quality of studies using the Joanna Briggs Institute Critical Appraisal Tool. RESULTS: The database search yielded 253 studies and five studies were included in the final review. Studies were conducted in mostly White patients in outpatient clinics in the United States. Researchers wrote text at lower reading levels, added images to materials, and created videos to enhance communication. Health literacy interventions increased participant knowledge, preference for comfort care, engagement, and care documentation; however, several methodological issues were identified, including baseline differences in treatment and control groups, issues with blinding, lack of valid and reliable outcome measures, and inappropriate statistical analyses. SIGNIFICANCE OF RESULTS: More high-quality intervention studies that address the effects of limited health literacy on advance care planning in diverse populations and settings are needed. Future intervention studies should use reliable and valid instruments to measure advance care planning outcomes. Clinicians should use materials appropriate for their patients' health literacy levels to address their advance care planning needs.

Examination and Analysis of After-Hours Calls in Hospice.

To ensure safe and effective care at home, most hospice agencies provide 24-hour call services to patients and their families. However, responding to such calls can be very extensive since so many calls occur after hours when staff are fewer. The purpose of the current study was to better understand the types of after-hours calls and differences across patient teams. By understanding why these calls are made, we might be able to reduce the number of avoidable after-hours calls. This descriptive retrospective chart review study was conducted using data from 9 patient care teams within a single hospice agency. During the 6-month study period, the hospice agency received 1596 after-hours calls. The number of calls averaged 10.3 per night. Common clinical-related calls included consultations about the shortness of breath (10.2%) and pain (9.5%). A total of 37.7% of the calls were nonclinical, nonemergency in nature, including requests for supplies (29.6%) and medication refills (8.1%). There were statistically significant differences (P < .05) between teams in the numbers of supply request calls, medication refill request calls, and calls associated with clinical-related issues. Also, there was a statistically significant difference in the after-hours calls across teams that resulted in dispatching staff to a home (P < .05). These findings suggest that many after-hours calls would be more appropriately addressed during regular daytime hours. There are significant across-team differences that are not yet well understood. Further studies are needed to determine how to reduce the number of after-hours calls.

Feasibility of e-Pain Reporter: A Digital Pain Management Tool for Informal Caregivers in Home Hospice.

Informal hospice caregivers often have difficulty managing patient pain at home. We developed a digital application, e-Pain Reporter, for informal caregivers to record and providers to monitor patient pain and pain management. The purpose of this study was (1) to assess the feasibility of informal caregivers using the e-Pain Reporter for 9 days in home hospice by investigating recruitment and retention and caregiver satisfaction with and frequency of use of the e-Pain Reporter and (2) describe patient pain characteristics and caregiver's barriers to pain management and self-efficacy in providing patient care in the home. One-group pre-post design was used. Patient-caregiver dyads were recruited from 1 hospice agency. Caregivers were asked to report all patient pain and pain management using the e-Pain Reporter. Feasibility of the e-Pain Reporter was assessed by the average number of times caregivers recorded breakthrough and daily pain and caregiver satisfaction with the app. The 27-item Barriers Questionnaire II and 21-item Caregiver Self-efficacy Scale were administered at baseline. Fourteen dyads enrolled, 2 patients died, and 12 dyads completed the study. Mean number of pain reports over 9 days was 10.5. Caregivers reported high overall satisfaction with the e-Pain Reporter. Barriers scores were moderately high, suggesting erroneous beliefs and misconceptions about pain reporting and use of analgesics, but self-efficacy in managing pain was also high (93% confidence). Findings suggest that the e-Pain Reporter is a feasible method to report and monitor caregiver management of pain at home. Caregiver high barriers and high overconfidence suggest the need for an educational component to the e-Pain Reporter to address misconceptions about pain and pain management.

Components of the Advance Care Planning Process in the Nursing Home Setting.

The purposes of this study were to describe the advance care planning process for nursing home residents and identify common concerns regarding advance care planning. We conducted a content analysis of video-conferenced advance care planning meetings in the nursing home. Fourteen nursing home residents and 10 family members were included in the analysis. Themes based on the participants' statements during the meetings were used to generate the Advance Care Planning Process Framework. The Advance Care Planning Process Framework has 3 primary phases: (1) assess resident's status regarding end-of-life care, which includes establishing common language; identifying resident's unrealistic goals and wishes; and identifying inconsistencies between resident's expressed wishes and the preferences documented in medical record; (2) negotiate realistic plan of care, which includes addressing inconsistencies between resident's and family's goals; rephrasing goals and wishes in hypothetical scenarios; and clarifying goals; and (3) create action plan, which includes complete advance directives and revisit/revise in the future as needed. Most of the consultations resulted in action plans to facilitate concordance between resident wishes and medical records. Advance care planning with palliative care specialists provided a valuable opportunity for nursing home residents and families to discuss advance directives and provided valuable clarification of their goals of care.

Behavioral Pain Intervention for Hospice and Palliative Care Patients: An Integrative Review.

Despite the advances in pain management, achieving optimal pain control in hospice and palliative care is challenging. Patient/caregiver's lack of pain management knowledge, poor pain reporting, and poor adherence to pain management regimens are all associated with inadequate pain control. The purpose of this integrated review is to examine behavioral interventions designed for patients and caregivers to improve pain control in hospice and palliative care settings. Ten studies were identified through a database search. Seven of the 10 studies found significant improvement in at least 1 pain marker. Of the 7 studies that looked at changes in pain knowledge, 5 had significant improvements in at least 1 knowledge subscale. The 2 studies that looked at adherence to pain management found significant improvements. One limitation of the reviewed studies was that the delivery of them would not be efficient across all health-care settings, and, as a consequence, more technologically sophisticated delivery methods are needed. Therefore, while it is clear from the review that effective pain management interventions have been developed for hospice and palliative care patients, it is also clear that future research needs to focus on providing these same interventions through a more technologically sophisticated delivery method.

E-Pain Reporter: A Digital Pain and Analgesic Diary for Home Hospice Care.

Informal hospice caregivers play a key role in managing patients' pain at home, but lack of adherence to doctor-prescribed analgesic regimens and medication errors are significant barriers to truly effective pain management. A digital pain diary may improve caregiver management of pain at home; however, most digital pain tools available today were developed without input from patients or caregivers. Accordingly, the purpose of this study was to develop a digital pain application (1) for hospice caregivers to record patient pain and analgesic use and (2) for nurses to monitor administration of analgesics by caregivers. Using advisory group methods, nurse case managers (n = 6), and informal caregivers (n = 3) helped us to convert a paper-based pain and analgesic diary into a digital format-the e-PAIN Reporter-and to refine the application. The e-PAIN Reporter provides information on patient pain assessment and pain management and reports to nurses in real time. Further testing is now needed to determine (1) the feasibility of using the e-PAIN Reporter and (2) its effectiveness in improving pain management for hospice patients.

Effect of hospice nonprofessional caregiver barriers to pain management on adherence to analgesic administration recommendations and patient outcomes.

Nonprofessional caregivers frequently experience barriers to using analgesics for pain in patients in home hospice settings, and patients in pain may suffer needlessly. For example, caregiver adherence to the administration of analgesics is lower for as-needed (PRN) regimens than for standard around-the-clock regimens. But little is known about the barriers caregivers experience and the effects of those barriers. Accordingly, we determined caregiver barriers to using analgesics to manage the pain of patients in the home hospice care setting, and how such barriers affected caregiver adherence and patient quality of life. To this end, we measured barriers, caregiver adherence to PRN analgesic regimens, and patient health outcomes (pain, depression, quality of life [QoL]). A 3-day longitudinal design was used. We recruited 46 hospice nonprofessional caregiver-patient dyads from a local community hospice agency. Barriers were measured with the Barrier Questionnaire II. Adherence to the PRN analgesic regimen was obtained with a 3-day pain and medication diary. Patient outcome measures included pain intensity, the Hospital Depression Scale, and the Brief Hospice Inventory for QoL. Barrier scores were moderate to low. Caregivers adhered to PRN analgesic regimens approximately 51% of the time. Higher caregiver adherence to PRN analgesic regimens was associated with lower patient pain intensity and higher patient QoL, but not, surprisingly, with barriers to pain management. Longitudinal studies are now needed to identify factors besides caregiver barriers that may unduly lower caregiver adherence to PRN analgesic regimens.