PURPOSE: This study evaluates whether an intervention to identify Canadian patients eligible for a palliative approach changes the use of health care resources and costs within the final month of life.
METHODS: Between 2014 and 2017, physicians identified 1,187 patients in family practice units and cancer centers who were likely to die within 1 year based on diagnosis, symptom assessment, and performance status. A multidisciplinary intervention that included activation of community resources and initiation of palliative planning was started. By using propensity-score matching, patients in the intervention group were matched 1:1 with nonintervention controls selected from provincial administrative data. We compared health care use and costs (using 2017 Canadian dollars) for 30 days before death between patients who died within the 1-year follow-up and matched controls.
RESULTS: Groups (n = 629 in each group) were well-balanced in sociodemographic characteristics, comorbidities, and previous health care use. In the last 30 days, there was no differences in proportions between the two groups of patients regarding emergency department visits, intensive care unit admissions, or inpatient hospitalizations. However, patients in the intervention group had greater use of palliative physician encounters, community home care visits, and/or physician home visits (92.8% v 88.4%; P = .007). In the 507 pairs with cancer, more patients in the intervention group underwent chemotherapy (44% v 33%; P < .001) and radiation (18.7% v 3.2%; P = .043) in the last 30 days. Mean cost per patient was similar for the intervention group (mean, $17,231; 95% CI, $16,027 to $18,436) and for the control group (mean, $16,951; 95% CI, $15,899 to $18,004).
CONCLUSION: Even with the limitations in our observational study design, identification of palliative patients did not significantly change overall costs but may shift resources toward palliative services.
AIM: To establish an understanding of the experiences of newly qualified nurses' working in hospices from the perspective of both newly qualified and senior nurses.
DESIGN: A qualitative interview study.
METHODS: Semi-structured interviews with six newly qualified nurses and five senior nurses from four United Kingdom hospices were conducted between March - July 2017.
RESULTS: The hospices involved in this study were among the first to recruit newly qualified nurses. Participants believed newly qualified nurses coped well with hospice working and received unique opportunities for professional development. Participants identified the value of formal and informal support however newly qualified nurses faced negative attitudes from some established staff. Newly qualified nurses expressed concerns about a perceived lack of technical clinical skills training however they highlighted gaining end-of-life care and communication skills that would be transferrable to other settings. Participants highlighted the need to allocate more time for education and formal support including preceptorship. Senior staff did not necessarily expect newly qualified nurses to remain in long-term hospice employment suggesting they could disseminate their hospice learning to future workplaces.
CONCLUSION: This study supports recruitment strategies that increasingly target newly qualified nurses to work in hospices with findings suggesting that hospices can be a suitable environment for recent graduates to work in. The senior nurses in this study viewed the employment of newly qualified nurses in a positive light but shared the concerns of newly qualified nurses regarding skills training.
IMPACT: At a time when hospices need to expand if they are going to meet demand for their services, they along with most areas of healthcare face difficulties recruiting and retaining registered nurses. To increase the appeal of hospice employment, recruitment campaigns aimed at newly qualified nurses should emphasise the transferability of skills gained in hospice settings.
Background: To improve the quality of advance care planning (ACP) in primary care, it is important to understand the frequency of and topics involved in the ACP discussion between patients and their family physicians (FPs).
Methods: A secondary analysis of a previous multicenter cross-sectional observational study was performed. The primary outcome of this analysis was the frequency of and topics involved in the ACP discussion between outpatients and FPs. In March 2017, 22 family physicians at 17 clinics scheduled a day to assess outpatients and enrolled patients older than 65 years who were recognized by FPs as having regular visits. We defined three ACP discussion topics: 1) future decline in activities of daily living (ADL), 2) future inability to eat, and 3) surrogate decision makers. FPs assessed whether they had ever discussed any ACP topics with each patient and their family members, and if they had documented the results of these discussions in medical records before patients were enrolled in the present study. We defined patients as being at risk of deteriorating and dying if they had at least 2 positive general indicators or at least 1 positive disease-specific indicator in the Japanese version of the Supportive and Palliative Care Indicators Tool.
Results: In total, 382 patients with a mean age of 77.4 ± 7.9 years were enrolled, and 63.1% were female. Seventy-nine patients (20.7%) had discussed at least one ACP topic with their FPs. However, only 23 patients (6.0%) had discussed an ACP topic with family members and their FPs, with the results being documented in their medical records. The topic of future ADL decline was discussed and documented more often than the other two topics. Patients at risk of deteriorating and dying discussed ACP topics significantly more often than those not at risk of deteriorating and dying (39.4% vs. 16.8%, p < 0.001).
Conclusion: FPs may discuss ACP with some of their patients, but may not often document the results of this discussion in medical records. FPs need to be encouraged to discuss ACP with patients and family members and describe the decisions reached in medical records.
RATIONALE: Even though Idiopathic pulmonary fibrosis (IPF) is a disease with high morbidity and mortality and no cure, palliative care is rarely implemented, leading to high symptom burden and unmet care needs. In 2012 we implemented a Multidisciplinary Collaborative (MDC) care model linking clinic and community multidisciplinary teams to provide an early-integrated palliative approach, focusing on early symptom management and advanced care planning (ACP).
OBJECTIVES: This study evaluates the differences in resource utilization and associated costs of end-of-life care between early-integrated palliative and conventionally treated IPF patients.
METHODS: Using administrative health data, we identified all patients in Alberta who presented to hospital with an IPF diagnosis between Jan 1, 2012 and Dec 31, 2018 and died within this timeframe. We compared 3 groups of patients: those who received (1) MDC care (our clinic patients), (2) specialist care (SC; respirologist), and (3) non-specialist care (NSC; no contact with a respiratory clinic). The primary outcomes were health care resource utilization and costs in the year before death.
RESULTS: Of 2,768 patients across three groups, MDC patients were over 3 times more likely to have received anti-fibrotic therapies over SC patients (OR=3.0; 95%CI 1.8-5.2), almost twice as likely to receive pulmonary rehab (OR=1.9; 95%CI 1.1-3.4) and 36% more likely to receive opiates (OR=1.4; 95%CI 0.8-2.3) in the last year of life. The median total health care costs in the last 3 months of life were approximately $7,700 CDN lower for MDC patients compared to those receiving specialist care, driven primarily by fewer hospitalizations and ED visits. MDC patients were also less likely to die in hospital (44.9% MDC vs 64.9% SC vs 66.8% NSC, p<0.001) and had the highest rates of no hospitalization in the last year of life.
CONCLUSIONS: An integrated palliative approach in IPF is associated with improvements in the quality of end-of-life care and reduction in costs. Transformation of care models is required to deliver a palliative approach in IPF. Multidisciplinary collaborative teams within such models can address the high burden of unmet needs for symptom management, advance care planning (ACP) and community support in this complex population.
Purpose: The goal of chemotherapy for metastatic breast cancer (MBC) is palliation of symptoms while minimizing treatment-related toxicities. It remains unclear whether use of granulocyte colony-stimulating factor (G-CSF) to maintain relative dose intensity of chemotherapy for MBC is associated with improved clinical outcomes.
Methods: The medical records of MBC patients treated with chemotherapy in 1st–3rd-line settings between May 2010 and April 2014 were reviewed. Time to progression (TTP), progression-free survival (PFS), and overall survival (OS) were compared between patients who received G-CSF and those who did not. Antibiotic use, total clinic visits, and pre- and post-treatment Eastern Cooperative Oncology Group (ECOG) performance status were also compared between the groups.
Results: Of the 169 patients included, 55 (32.5%) received > 1 G-CSF dose and 114 (67.5%) did not receive any G-CSF. The median TTP was similar between the two groups (5.0 months (95% CI 3.4–7.1) vs. 5.2 months (95% CI 4.8–6.2) respectively; p = 0.998). The median PFS (p = 0.955; 5.0 months (95% CI 3.4–5.9) vs. 5.2 months (95% CI 4.7–6.0), respectively) and OS (14.6 (95% CI 9.0–26.6) vs. 18.5 months (95% CI 15.2–22.0) in G-CSF and non-G-CSF groups, respectively; p = 0.628) were also similar between groups. No significant between-group differences were noted in rate of decline in ECOG performance status, antibiotic use, and number of clinic visits and hospitalizations.
Conclusion: This retrospective analysis did not find any evidence that the use of G-CSF to maintain chemotherapy dose intensity for the treatment of MBC improves TTP, PFS, and OS or results in improved ECOG performance status compared with lack of G-CSF use in patients with MBC treated in 1st to 3rd-line settings.
BACKGROUND: Family caregivers of patients with severe illness and in need for a palliative care approach, face numerous challenges and report having insufficient preparedness for the caregiver role as well as a need for information and psychosocial support. Preparing to care for a severely ill family members also means becoming aware of death. Feelings of being prepared are associated with positive aspects and regarded protective against negative health consequences.
METHODS: The study adheres to the SPIRIT-guidelines (Supplementary 1), uses a pre-post design and include a web-based intervention. Inclusion criteria are; being a family caregiver of a patient with severe illness and in need of a palliative care approach. The intervention which aims to increase preparedness for caregiving and death is grounded in theory, research and clinical experience. The topics cover: medical issues, symptoms and symptom relief; communication within the couple, how to spend the time before death, being a caregiver, planning for the moment of death and; considerations of the future. The intervention is presented through videos and informative texts. The website also holds an online peer-support discussion forum. Study aims are to: evaluate feasibility in terms of framework, content, usage and partners' experiences; explore how the use of the website, influences family caregivers' preparedness for caregiving and death; explore how the use of the website influences family caregivers' knowledge about medical issues, their communication with the patient and their considerations of the future; and to investigate how the family caregivers' preparedness for caregiving and death influences their physical and psychological health and quality of life 1 year after the patient's death. Data will be collected through qualitative interviews and a study-specific questionnaire at four time-points.
DISCUSSION: This project will provide information about whether support via a website has the potential to increase preparedness for caregiving and death and thereby decrease negative health consequences for family caregivers of patients affected by severe illness. It will provide new knowledge about intervention development, delivery, and evaluation in a palliative care context. Identification of factors before death and their association with family caregivers' preparedness and long-term health may change future clinical work.
TRIAL REGISTRATION: The study is registered at ClinicalTrials.gov: NCT03676283.
BACKGROUND: Phase of Illness is used to describe the stages of a patient’s illness in the palliative care setting. Categorization is based on individual needs, family circumstances, and the adequacy of a care plan. Substantial ( = .67) and moderate ( = .52) inter-rater reliability is demonstrated when categorizing adults; however, there is a lack of similar studies in pediatrics.
OBJECTIVE: To test the inter-rater reliability of health-care professionals when assigning pediatric palliative care patients to a Phase of Illness. Furthermore, to obtain user views on phase definitions, ease of assignment, feasibility and acceptability of use.
METHOD: A prospective cohort study in which up to 9 health-care professionals' independently allocated 80 pediatric patients to a Phase of Illness and reported on their experiences. This study took place between June and November 2017.
RESULTS: Professionals achieved a moderate level of agreement ( = 0.50). Kappa values per phase were as follows: stable = 0.63 (substantial), unstable = 0.26 (fair), deteriorating = 0.45 (moderate), and dying = 0.43 (moderate). For the majority of allocations, professionals report that the phase definitions described patients very well (76.1%), and they found it easy to assign patients (73.5%). However, the unstable phase caused the most uncertainty.
CONCLUSION: The results of this study suggest Phase of Illness is a moderately reliable, acceptable, and feasible tool for use in pediatric palliative care. Current results are similar to those found in some adult studies. However, in a quarter of cases, users report some uncertainty in the application of the tool, and further study is warranted to explore whether suggested refinements improve its psychometric properties.
PURPOSE: To explore the attitude of nursing professionals towards death.
DESIGN: Systematic qualitative review methods were used.
METHODS: A search was conducted in the PubMed, Web of Science, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and CUIDEN databases. This study included 17 articles.
FINDINGS: Thirteen categories emerged, which were grouped into three themes: meanings and feelings during the dying process; coping strategies in the face of death; and the importance of training, experience, and providing a dignified death. In the different accounts of the participants, it was found that death had a large negative emotional impact on them, that the participants complained about the lack of previous training in the care of dying patients, and that avoiding these complex situations was one of the strategies most commonly used by professionals to face the death of a patient.
CONCLUSIONS: The lack of training in the basic care of terminally ill patients, as well as today's preconceived negative idea about death, both cause health professionals to experience situations of great stress and frustration resulting, on many occasions, in resorting to avoidance of these situations, thus preventing dying with dignity.
CLINICAL RELEVANCE: In this article, we explore the consequences of this process for nursing professionals, common coping strategies, and possible areas for improvement, such as the need for the training of nursing professionals in the care of terminally ill patients and their families.
OBJECTIVES: Despite growing interest in frailty as a significant public health challenge, comparatively little is known about how older adults perceive and experience frailty, limiting the effectiveness of strategies to improve frailty management and prevention. The objective of this study was to understand how older people, including frail older persons in residential aged care, perceive and understand frailty through an interpretive-descriptive qualitative study.
SETTING: Aged care facility, community-based university for older persons and an aged care auxiliary care group in a large metropolitan centre in South Australia.
PARTICIPANTS: 39 non-frail, prefrail, frail and very frail South Australian older adults.
METHODS: Seven focus groups were conducted. Participants completed one of two frailty instruments depending on setting and indicated whether they self-identified as frail. Data were analysed inductively and thematically by two independent investigators.
RESULTS: Frailty was described according to three schemas of (1) the old and frail: a static state near the end of life; (2) frailty at any age: a disability model; and (3) frailty as a loss of independence: control, actions and identity. In addition, a theme was identifying linking mindset, cognition and emotion to frailty. The term frailty was viewed negatively and was often implicated with personal choice. There was little correlation between frailty assessments and whether participants self-identified as frail.
CONCLUSIONS: Aside from a disability model, views of frailty as unmodifiable permeated older persons' diverse perspectives on frailty and are likely to impact health behaviours. To our knowledge, this is among the largest qualitative studies examining consumer perceptions of frailty and contributes a clinically relevant schema linking age, prevention and modifiability from a consumer perspective.
BACKGROUND: Nutrition is a basic patients' need and an important component of nursing. End-of-life cancer patients can experience difficulties in eating and drinking, sometimes requiring artificial nutrition and hydration (ANH). Nurses' knowledge and attitudes greatly influence nursing care. Nurses may lack knowledge of ANH. To date, no study has explored the knowledge and attitudes of oncology and palliative care nurses toward end-of-life ANH.
OBJECTIVE: To describe oncology and palliative care nurses' knowledge of and attitudes toward ANH.
METHODS: A multicenter cross-sectional study was conducted in 7 regions of Italy using the Italian version of the Questionnaire on Knowledge and Attitudes in Providing ANH for Terminal Cancer Patients. Attitudes were divided into benefits and burdens of providing ANH. Data were analyzed by descriptive statistics.
RESULTS: High percentages of oncology and palliative care nurses showed reasonable knowledge about ANH. More disagreement was evidenced about benefits and burdens of ANH, and lower importance was given to them.
CONCLUSIONS: Some misconceptions and a low level of awareness exist among some nurses about ANH. More nursing studies should be conducted and extended to different care settings. Moreover, guidelines should be reinforced with a nursing perspective to better define nurses' role in the decision-making process on ANH.
IMPLICATIONS FOR PRACTICE: This exploration of nurses' knowledge of and attitudes toward ANH in end-of-life cancer patients can contribute to an understanding of how nurses can be involved in better meeting cancer patients' nutritional needs at the end of life.
Opioids are an effective treatment for patients with intractable pain. Long-term administration of opioids for pain relief is being delivered by an increasing number of medical providers in the United States including primary care physicians and nonspecialists. One common complication of chronic opioid use is sleep-disordered breathing which can result in various morbidities as well as an increase in all-cause mortality. It is important for providers to understand the relationship between opioids and sleep-disordered breathing as well as methods to improve diagnosis and strategies for treatment. This review aims to update clinicians on the mechanism, diagnosis, and treatment of opioid-related sleep-disordered breathing in order to improve the quality of care for patients with chronic pain.
BACKGROUND: High incidence of treatable oral conditions has been reported among palliative patients. However, a large proportion of palliative patients lose their ability to communicate their sufferings. Therefore, it may lead to under-reporting of oral conditions among these patients. This review systematically synthesized the published evidence on the presence of oral conditions among palliative patients, the impact, management, and challenges in treating these conditions.
METHODS: An integrative review was undertaken with defined search strategy from five databases and manual search through key journals and reference list. Studies which focused on oral conditions of palliative patients and published between years 2000 to 2017 were included.
RESULTS: Xerostomia, oral candidiasis and dysphagia were the three most common oral conditions among palliative patients, followed by mucositis, orofacial pain, taste change and ulceration. We also found social and functional impact of having certain oral conditions among these patients. In terms of management, complementary therapies such as acupuncture has been used but not well explored. The lack of knowledge among healthcare providers also posed as a challenge in treating oral conditions among palliative patients.
CONCLUSIONS: This review is first in its kind to systematically synthesize the published evidence regarding the impact, management and challenges in managing oral conditions among palliative patients. Although there is still lack of study investigating palliative oral care among specific group of patients such as patients with dementia, geriatric or pediatric advanced cancer patients, this review has however provided baseline knowledge that may guide health care professionals in palliative settings.
Background: Large, nationally representative studies of the association between quality of life and survival time in cancer patients in specialized palliative care are missing.
Aim: The aim of this study was to investigate whether symptoms/problems at admission to specialized palliative care were associated with survival and if the symptoms/problems may improve prediction of death within 1 week and 1 month, respectively.
Setting/participants: All cancer patients who had filled in the EORTC QLQ-C15-PAL at admission to specialized palliative care in Denmark in 2010–2017 were included through the Danish Palliative Care Database. Cox regression was used to identify clinical variables (gender, age, type of contact (inpatient vs outpatient), and cancer site) and symptoms/problems significantly associated with survival. To test whether symptoms/problems improved survival predictions, the overall accuracy (area under the receiver operating characteristic curve) for different prediction models was compared. The validity of the prediction models was tested with data on 5,508 patients admitted to palliative care in 2018.
Results: The study included 30,969 patients with an average age of 68.9 years; 50% were women. Gender, age, type of contact, cancer site, and most symptoms/problems were significantly associated with survival time. The predictive value of symptoms/problems was trivial except for physical function, which clearly improved the overall accuracy for 1-week and 1-month predictions of death when added to models including only clinical variables.
Conclusion: Most symptoms/problems were significantly associated with survival and mainly physical function improved predictions of death. Interestingly, the predictive value of physical function was the same as all clinical variables combined (in hospice) or even higher (in palliative care teams).
BACKGROUND: Despite advances in medical care, pediatric deaths are still an unfortunate reality. Most of these deaths occur within a hospital setting. End-of-life care is an important part of medical care for children with serious illnesses. Despite the importance, pediatric providers report a lack of comfort surrounding end-of-life care.
OBJECTIVE: To assess categorical pediatric residents' perceptions and participation in providing end-of-life care to dying children and their families.
STUDY DESIGN: This is a survey-based, descriptive, mixed-methods study. Survey was sent to categorical pediatric residents at Indiana University School of Medicine in June 2018 to obtain both quantitative and qualitative information on resident perception and participation in end-of-life care. Surveys were sent to 100 residents with a response rate of 68%.
SETTING/PARTICIPANTS: Pediatric residents at Indiana University School of Medicine.
RESULTS: The comfort and participation in end-of-life care are limited in all levels of pediatric training. Residents do not feel comfortable with 19 of 22 questions related to end-of-life care. Only 32% of residents felt their education prepared them to participate in end-of-life care. Almost one-fifth (19.5%) of residents report participating in zero aspect of end-of-life care. Themes discussed by residents include education, experience, communication, social norms, emotions, self-care, comfort, and family.
CONCLUSION: More formalized education and training is needed to increase resident comfort with and participation in end-of-life care. Such future interventions should focus on communication surrounding difficult conversations and providing guidance for families.
OBJECTIVES: The purpose of this quality improvement (QI) project was to improve the overall process of implementing continuous subcutaneous infusion of opioids (CSCIOs) at the West Palm Beach Veterans Affairs Medical Center and characterize their use in the hospice unit.
METHODS: A retrospective chart review from July 2014 to August 2017 was conducted to identify patients who had received CSCIO. Results were analyzed with descriptive statistics.The business philosphy, LEAN methodology "The 5 Whys" was utilized to identify the root causes for delayed infusion timeliness and corrections were implemented by August 2018. Follow-up retrospective time study completed from September 2018 to February 2019.
RESULTS: Of the 107 patients identified, 7 were excluded and 100 were reviewed. The mean age was 73 years, 94% male, and 86% Caucasian. A total of 55 veterans received morphine with an average final infusion rate of 2.5 mg/h. A total of 45 Veterans received hydromorphone with a final infusion rate of 1.3 mg/h. The average infusion duration until death was 5 days. Pharmacy verified 94 (94%) orders and nursing verified 55 (55%) orders within 1 hour (gold standard). Sixteen (16%) patients received CSCIO within 1 hour. The 5 Whys identified nursing order verification and pharmacy lack of visual STAT order notification for priority as the potential sources for infusion timeliness improvement. The follow-up time study confirmed improvement in pharmacy delivery time from 29% to 75% on time.
CONCLUSION: Pharmacist-led intervention directed to improve CSCIO processes in an inpatient hospice unit utilizing LEAN QI methodology increased timeliness of pharmacy CSCIO delivery.
BACKGROUND: Despite a broad consensus and recommendations, numerous international reports or studies have shown the difficulties of implementing palliative care within healthcare services. The objective of this study was to understand the palliative approach of registered nurses in hospital medical and surgical care units and their use of mobile palliative care teams.
METHODS: Qualitative study using individual in depth semi-structured interviews and focus group of registered nurses. Data were analyzed using a semiopragmatic phenomenological analysis. Expert nurses of mobile palliative care team carried out this study. 20 registered nurses from three different hospitals in France agreed to participate.
RESULTS: Nurses recognize their role as being witnesses to the patient's experience through their constant presence. This is in line with their professional values and gives them an "alert role" that can anticipate a patient-centered palliative approach. The physician's positioning on palliative care plays a key role in its implementation. The lack of recognition of the individual role of the nurse leads to a questioning of her/his professional values, causing inappropriate behavior and distress. According to nurses, "rethinking care within a team environment" allows for the anticipation of a patient-centered palliative approach. Mobile Palliative Care Team highlights the major role of physicians-nurses "balance" while providing personal and professional support.
CONCLUSIONS: The Physician's positioning and attitude toward palliative approach sets the tone for its early implementation and determines the behavior of different staff members within healthcare service. "Recognition at work", specifically "recognition of the individual role of nurse" is an essential concept for understanding what causes the delay in the implementation of a palliative approach. Interprofessional training (physicians and nurses) could optimize sharing expertise. Registered nurses consider MPCT as a "facilitating intermediary" within the healthcare service improving communication. Restoring a balance in sharing care and decision between physicians and other caregivers lead care teams to an anticipated and patient-centered palliative approach according to guidelines.
Background: Multidrug-resistant organisms are a growing challenge and burden to patient care. To date, there are only data concerning the prevalence of methicillin-resistant Staphylococcus aureus infections. Thus, numbers of other multidrug-resistant organisms can only be extrapolated and inferred from more or less comparable cohorts.
Aim: To evaluate the prevalence of multidrug-resistant organisms on palliative care in-patients.
Design: A prospective cohort analysis
Setting/participants: A University Hospital–bound palliative care unit, in which all patients admitted to the unit were screened for inclusion.
Results: In total, 304 patients were included in this study. The prevalence for methicillin-resistant Staphylococcus aureus of 5.2% (95% confidence interval: 2.9%–8.4%), for vancomycin-resistant Enterococcus faecium of 10.5% (95% confidence interval: 7.2%–14.8%), for Ciprofloxacin-resistant-extended spectrum beta-lactamases isolates of 5.8% (95% confidence interval: 3.4%–9.3%) and Ciprofloxacin-resistant Carbapenem-resistant Gram-negative bacteria of 0.3% (95% confidence interval: 0%–1.3%) was calculated. Except for methicillin-resistant Staphylococcus aureus, patients carrying a multidrug-resistant organism had a significant longer duration of hospitalization. Median length of stay was 12 days (interquartile range: 14.5, no multidrug-resistant organisms), 14.5 days (interquartile range: 15, methicillin-resistant Staphylococcus aureus), 21 days (interquartile range: 16.5, vancomycin-resistant enterococci), 22 days (interquartilsabstand: 20.75, Ciprofloxacin-resistant-extended spectrum beta-lactamases) and 32 days (interquartilsabstand: 22.00) for patients carrying two organisms.
Conclusion: There is a high prevalence of all multidrug-resistant organisms within the hospitalized palliative care patients. However, the multidrug-resistant organisms do not seem to impact the survival within this cohort. Further studies should evaluate additional end-points, for example, quality of life, which are of special interest in this cohort.
The purpose of this study was to examine the psychometric properties of the Advance Directive Attitude Survey in Korean (K-ADAS), a measure of attitudes toward advance directives (ADs). A total of 118 low-income, community-dwelling older adults (mean age, 75.09 years) participated. An exploratory factor analysis (EFA) was conducted to determine the factor structure of the K-ADAS. Validity was further assessed by known associations of the K-ADAS with perceived susceptibility and severity using part of the Advance Care Planning surveys. Its reliability was examined by calculating alpha coefficients. EFA determined a three-factor structure model with good model fit. Validity was further supported with significant correlations between the K-ADAS and susceptibility and severity. Reliability was supported by adequate level of Cronbach's alpha. The K-ADAS was a valid and reliable measure for assessment of AD attitudes with a sound model fit. Thus, the K-ADAS can be used to assess AD attitudes among community-dwelling elders.
OBJECTIVES: Little is known about the relationship between loneliness and end-of-life (EOL) experience including symptom burden, intensity of care, and advance care planning among older adults.
DESIGN: Secondary analysis of the Health and Retirement Study (HRS).
SETTING: Population based.
PARTICIPANTS: Decedents older than 50 years who died between 2004 and 2014 (n = 8700). Exclusions included those who were ineligible for surveys assessing loneliness (n = 2932) or had missing or incomplete loneliness or symptom data (n = 2872).
MEASUREMENTS: Individuals were characterized as lonely based on responses to the three-item Revised University of California, Los Angeles Loneliness Scale in the most recent HRS survey before death. Outcomes were proxy reports of total EOL symptom burden, intensity of EOL care (eg, late hospice enrollment, place of death, hospitalizations, use of life support), and advance care planning. Results were expressed as adjusted odds ratios (aORs) with 95% confidence intervals (CIs).
RESULTS: One-third of 2896 decedents (n = 942) were lonely. After adjusting for demographics, socioeconomic status, multimorbidity, depressive symptoms, family and friends, and social support, loneliness was independently associated with increased total symptom burden at EOL (ß = .13; P = .004). Compared with nonlonely individuals, lonely decedents were more likely to use life support in the last 2 years of life (35.5% vs 29.4%; aOR = 1.36; 95% CI = 1.08-1.71) and more likely to die in a nursing home (18.4% vs 14.2%; aOR = 1.78; 95% CI = 1.30-2.42). No significant differences in other measures of intense care (late hospice enrollment, number of hospitalizations, or dialysis use) or likelihood of advance care planning were observed.
CONCLUSION: Lonely older people may be burdened by more symptoms and may be exposed to more intense EOL care compared with nonlonely people. Interventions aiming to screen for, prevent, and mitigate loneliness during the vulnerable EOL period are necessary.
There is a growing recognition of significant, unmet palliative care needs in nursing facilities, yet limitations in the workforce limit access to palliative care services. Attention to palliation is particularly important when there are efforts to reduce hospitalizations to help ensure there are no unintended harms associated with treating residents in place. A specialized palliative care registered nurse (PCRN) role was developed as part of the OPTIMISTIC (Optimizing Patient Transfers, Impacting Medical quality, and Improving Symptoms: Transforming Institutional Care) program, a federally funded project to reduce potentially avoidable hospitalizations. Working in collaboration with existing clinical staff and medical providers, the PCRN focuses on managing symptoms, advance care planning, achieving goal concordant care, and promoting quality of life. The PCRN serves as a resource for families through education and support. The PCRN also provides education and mentorship to staff to increase their comfort, knowledge, and skills with end-of-life care. The goals of this article are to provide an overview of the PCRN role and its implementation in nursing facilities and describe core functions that are transferrable to other contexts.