BACKGROUND: Increased burnout level and decreased job satisfaction in oncology nurses negatively affect the quality of life of the employees and impair the quality of nursing care, services to be provided.
SUBJECTS AND METHODS: The aim of this study was to determine levels and to compare of burnout and job satisfaction among cancer nurses in oncology, hematology and palliative care clinics.The research was conducted between July 2019 - December 2019 in oncology, hematology and pallitive care clinics in three different public training and research hospitals. Each nurse completed a Sociodemographic Data Form, the Minnesota Job Satisfaction Scale and the Maslach Burnout Scale.
RESULTS: Nurses were working for averagely 50.81±7.59 hours per week and averagely 200.72±29.09 hours per month. Mean weekly shift number of the nurses was 9.49±4.43. There was a statistically significant and negative correlation between the emotional exhaustion subscale scores of the nurses included in the study and their internal satisfaction scores external satisfaction scores and total satisfaction scores (p<0.001). There was a statistically significant and negative correlation between the nurses' Depersonalisation subscale scores and internal satisfaction scores, external satisfaction scores and total satisfaction scores (p<0.001). A statistically significant and positive correlation was found between the nurses' personal accomplishment subscale scores and internal satisfaction scores, external satisfaction scores and total satisfaction scores (p<0.001).
CONCLUSION: Nurses in palliative care clinics had the highest emotional exhaustion. Also there is a significant correlation between the job satisfaction and burnout levels of nurses working in hemotology, oncology and palliative care clinics providing care to cancer patients. There is a significant correlation between the job satisfaction and burnout levels of nurses working in hemotology, oncology and palliative care clinics providing care to cancer patients.
PURPOSE: Cancer patients in university hospitals often face a difficult decision regarding transfer to other care settings at the end-of-life. Arrangements for a satisfying transfer are important for reducing the psychosocial impact of the transition, but few studies have evaluated this aspect. This study aimed to identify factors related to the satisfying arrangement of transfers to other care settings from university hospitals.
METHODS: A total of 400 bereaved family members of cancer patients in Japan participated in this cross-sectional web-based questionnaire survey. Statistical methods including decision tree analysis were conducted to identify factors significantly associated with satisfying transfer arrangements.
RESULTS: More than 60% of cancer patients were satisfied with the transfer arrangements made by university hospitals. Decision tree analysis revealed that the factor most significantly associated with satisfaction with transfer arrangements was "satisfaction with contents of the explanation about transfer." The following significant factors were also extracted: "timing of being informed of transfer," "presence of primary care physician," and "presence of trustworthy staff." "Satisfaction with overall care from university hospital staff" and "involvement of palliative care team" were identified as factors contributing to a high degree of satisfaction with transfer arrangements.
CONCLUSION: In order to make satisfying transfer arrangements from university hospitals for cancer patients at the end-of-life, healthcare professionals should provide satisfactory explanations about the transfer process in order to meet the information needs of patients. To be effective, healthcare professionals should initiate transfer arrangements prior to cancer treatment, while simultaneously building trusting relationships with patients.
AIMS: This mixed methods longitudinal study evaluated Nav-CARE for feasibility, acceptability, ease of use, and satisfaction by older persons and volunteers.
METHODS: Nine volunteer navigators visited 23 older persons with serious illness every 3 to 4 weeks for 1 year. Data were collected from volunteer navigators, and older person participants at baseline, during the year- long implementation and post implementation.
RESULTS: Volunteer navigators and older persons reported Nav-CARE was easy to use, feasible and acceptable. The majority of older persons agreed or strongly agreed that they were satisfied with the navigation services (100%; 8/8), that navigation services were important to them (87%; 7/8), that they would recommend the program to someone else (87%; 7/8), and would participate in the program again (75%; 6/8). Similarly, volunteer navigators reported 100% (9/9) satisfaction with the program, 100% (9/9) would recommend it to others, and 67% (6/8) would participate again.
CONCLUSIONS: Nav-CARE appears to be a feasible, acceptable, and satisfactory program for older persons with serious illness and volunteer navigators.
Background: Many studies report on the patient-caregiver relationship during palliative care (PC); however, this relationship has yet to be examined following traumatic injury.
Methods : This prospective cohort study included trauma patients (=55 years) and their primary caregivers admitted at two level I trauma centers over two years (11/16-11/18), who received PC and who completed satisfaction surveys prior to discharge; surveys were analyzed by four domains: information giving, availability of care, physical care, and psychosocial care; and by PC assessments: consultations, prognostications, formal family meetings, and advanced goals of care discussions. The primary outcome was the percentage of patients and caregivers who were satisfied (defined as =80%) and was analyzed using McNemar’s test. Adjusted mixed models identified PC assessments that were associated with satisfaction =80% for patients and caregivers.
Results : Of the 441 patient- and 441 caregiver-pairs, caregivers were significantly less satisfied than patients during prognostications, (information giving; physical care), formal family meetings (information giving; physical care), and consultations (physical care), while caregivers were significantly more satisfied than patients during advanced goals of care discussions (availability of care; psychosocial care). After adjustment, significant predictors of caregiver satisfaction (=80%) included longer patient hospital LOS (>4 days), caring for a male patient (physical care; availability of care), higher caregiver age (=55 years: availability of care), and higher patient age (=65 years: psychosocial care). Conversely, all PC assessments decreased odds of satisfaction for caregivers in every domain except physical care. Significant predictors of higher patient satisfaction included formal family meetings (for every domain) and PC consultations (psychosocial care), and decreased odds included advanced goals of care discussions and prognostication assessments (information giving; psychosocial care).
Conclusions : PC increased satisfaction of patients, especially family meetings and consultations, while assessments were predictive of lower caregiver satisfaction, suggesting that caregivers may be experiencing some of the patient burden.
BACKGROUND: Improvement in quality of life (QoL) of patients is one of the most important goals of palliative care, but evaluation of QoL of patients is difficult.
AIM: To evaluate QoL of patients who died at home or in a hospital.
METHODS: We administered the Good Death Inventory (10 core and 8 optional domains) to the bereaved families of patients who died at home or in a hospital. A total of 107 bereaved families undertook a survey.
FINDINGS: If a bereaved family chose 'somewhat agree', 'agree' or 'absolutely agree', the answer was regarded as a 'satisfactory answer'. Regarding the 10 core domains, of patients who died in a hospital, <50% respondents gave a 'satisfactory answer' to three questions, whereas of patients who died at home, >60% of respondents gave a 'satisfactory answer' to seven questions. Regarding the eight optional domains, of patients who died in a hospital, <50% respondents gave a 'satisfactory answer' to five questions, whereas of patients who died at home, >60% of respondents gave a 'satisfactory answer' to four questions.
CONCLUSIONS: QoL of patients who died at home appeared higher than that of those who died in a hospital. Patients prefer to remain at home rather than in a hospital, probably because at home they are surrounded by familiar things and can live according to their usual habits.
Objective: Measuring the satisfaction of family caregivers regarding the palliative care provided to their family members is very important for quality improvement in the palliative care system. The aim of this study was to test the psychometric properties (i.e., reliability and validity) of the FAMCARE-2 Scale: Thai Translation for measuring family caregiver satisfaction.
Methods: A forward-backward translation process was utilized to produce the 17-item FAMCARE-2 Scale: Thai Translation. The questionnaire and the demographic data form were hand-delivered to the primary family caregivers of 66 palliative care patients of the inpatient wards at Maharaj Nakorn Chiang Mai Hospital, Faculty of Medicine, Chiang Mai University, on the patient discharge date. Internal consistency reliability testing of the FAMCARE-2 Scale: Thai Translation was assessed by calculating the Cronbach's alpha coefficient. Factor analysis was used to test construct validity.
Results: The FAMCARE-2 Scale: Thai Translation showed a high level of internal consistency (Cronbach's alpha coefficient of 0.94) and an item-to-total correlation coefficient of 0.13-0.77. Factor analysis of FAMCARE-2 revealed a four-factor structure: management of physical symptoms and comfort, patient care and sharing information, symptoms and side effects, and family and patient support.
Conclusions: The FAMCARE-2 Scale: Thai Translation was found to be a valid psychometric tool for measuring family caregiver satisfaction within the Thai context of palliative care.
Background/Objective: Surrogate decision makers for patients with intracerebral hemorrhage (ICH) are frequently asked to make difficult decisions on use of life-sustaining treatments. We explored ICH surrogate satisfaction with decision making and experience of decision regret using validated measures in a prospective multicenter study.
Methods: Cases of non-traumatic ICH were enrolled from three hospitals (September 2015–December 2016), and surrogate decision makers were invited to complete a self-administered survey. The primary outcome was the 10-item decision-making subscale of the Family Satisfaction in the Intensive Care Unit scale (FSICU-DM, range 0–100, higher is greater satisfaction), and the secondary outcome was the decision regret scale (range 0–100, higher is greater regret). Linear regression models were used to assess the association between satisfaction with decision making and pre-specified covariates using manual backward selection.
Results: A total of 73 surrogates were approached for participation (in person or mail), with 48 surrogates returning a completed survey (median surrogate age 60.5 years, 63% female, 77% white). Patients had a median age of 72.5, 54% were female, with a median admission Glasgow coma scale of 10, in-hospital mortality of 31%, and 56% with an in-hospital DNR order. Physicians commonly made treatment recommendation (> 50%) regarding brain surgery or transitions to comfort measures, but rarely made recommendations (< 20%) regarding DNR orders. Surrogate satisfaction with decision making was generally high (median FSICU-DM 85, IQR 57.5–95). Factors associated with higher satisfaction on multivariable analysis included greater use of shared decision making (P < 0.0001), younger patient age (p = 0.02), ICH score of 3 or higher (p = 0.03), and surrogate relationship (spouse vs. other, p = 0.02). Timing of DNR orders was not associated with satisfaction (P > 0.25). Decision regret scores were generally low (median 12.5, IQR 0–31.3).
Conclusions: Considering the severity and abruptness of ICH, it is reassuring that surrogate satisfaction with decision making was generally high and regret was generally low. However, more work is needed to define the appropriate outcome measures and optimal methods of recruitment for studies of surrogate decision makers of ICH patients.
Background: Lung cancer has a high impact on both patients and relatives due to the high disease burden and short life expectancy. Previous studies looked into treatment goals patients have before starting a systemic treatment. However, studies on relatives’ perceptions of treatment at the end of life are scarce. Therefore, we studied the perspectives of relatives in hindsight on the achievement of treatment goals and the choice to start treatment for metastatic lung cancer of their loved one.
Methods: we conducted a structured telephone interview study in six hospitals across the Netherlands, one academic and five non-academic hospitals, between February 2017 and November 2019. We included 118 relatives of deceased patients diagnosed with metastatic lung cancer who started a systemic treatment as part of usual care (chemotherapy, immunotherapy or targeted therapy with tyrosine kinase inhibitors (TKIs) and who completed a questionnaire on their treatment goals before the start of treatment and when treatment was finished. We asked the relatives about the achievement of patients’ treatment goals and relatives’ satisfaction with the choice to start treatment. This study is part of a larger study in which 266 patients with metastatic lung cancer participated who started a systemic treatment and reported their treatment goals before start of the treatment and the achievement of these goals after the treatment.
Results: Relatives reported the goals ‘quality of life’, ‘decrease tumour size’ and ‘life prolongation’ as achieved in 21, 37 and 41% respectively. The majority of the relatives (78%) were satisfied with the choice to start a treatment and even when none of the goals were achieved, 70% of the relatives were satisfied. About 50% of relatives who were satisfied with the patients’ choice mentioned negative aspects of the treatment choice, such as the treatment did not work, there were side effects or it would not have been the relatives’ choice. Whereas, 80% of relatives who were not satisfied mentioned negative aspects of the treatment choice. The most mentioned positive aspects were that they tried everything and that it was the patient’s choice.
Conclusion: The majority of relatives reported patients’ treatment goals as not achieved. However, relatives were predominantly satisfied about the treatment choice. Satisfaction does not provide a full picture of the experience with the treatment decision considering that the majority of relatives mentioned (also) negative aspects of this decision. At the time of making the treatment decision it is important to manage expectations about the chance of success and the possible side effects of the treatment.
Background: End-of-life care is increasing as the US population ages. Approaches to providing high-quality end-of-life care vary across setting, diseases, and populations. Several data collection tools measure patient and/or caregiver care experiences at end of life and can be used for quality improvement. Previous reviews examined palliative care improvements or available measures but none explicitly on improving care experiences. We reviewed literature on improving patient and/or caregiver end-of-life care experiences.
Design: We searched U.S. English-language peer-reviewed and grey literature after 2000 on adult end-of-life care experiences. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines for quantitative studies, Enhancing Transparency in Reporting the Synthesis of Qualitative Research approach for qualitative studies, and Assessment of Multiple Systematic Reviews tool for the literature reviews.
Setting: Palliative and hospice care.
Population: Full-text abstraction of 84 articles, identifying 16 articles.
Measures: Patient and/or caregiver end-of-life care experiences (captured through administrative data or direct report).
Results: Articles examined palliative care experiences across settings; none studied hospice care experiences. Patients and/or caregivers assessed overall care experiences, clinician–staff interactions, provider communication, respect and trust, timeliness of care, spiritual support, caregiver knowledge of care plans, or bereavement support. Efforts aimed at improving end-of-life care experiences are limited and show mixed results.
Conclusions: Literature on improving patient and/or caregiver end-of-life care experiences is emerging and focused on palliative care experiences. Evidence on improving hospice care experiences is lacking. Research on strategies for improving end-of-life care experiences should go beyond overall care experiences to include specific aspects of palliative and hospice care experiences.
Objectives: To measure trauma patient and caregiver satisfaction before and after implementation of standardised palliative care (PC) guidelines.
Methods: Prospective pre–post study at two level-I trauma centres. PC satisfaction surveys were administered prior to discharge for consented trauma patients (Family Satisfaction with Advanced Cancer Scale, Patient (FAMCARE-P13) survey)=55 years, and their caregivers (FAMCARE survey), from 1 November 2016 to 30 November 2018. Standardised PC guidelines were implemented January 2018 and included consultations, prognostication assessments, identification of proxies, review of advanced directives and do not resuscitate orders within 24 hours of admission, while advanced goals of care, formal family meetings and spiritual care support were recommended within 72 hours of admission. Generalised linear models were used to determine whether differences in patient or caregiver satisfaction existed pre versus post implementation.
Results: There were 572 patients (299 pre; 273 post) and 595 caregivers (334 pre; 261 post) included. Overall patient satisfaction significantly increased post implementation (82.0 vs 86.0, p=0.001). After adjustment, the implementation of the guidelines was an independent predictor of higher overall patient satisfaction (least squares mean (LSM= (83.8% (95%CI 81.2%-86.5%) vs 80.3% (77.7%-82.9%), p=0.003)). Compared with preimplementation, patient satisfaction was significantly higher post implementation in the following domains: information giving (80.9 vs 85.5, p=0.001), followed by physical care (82.2 vs 86.0, p=0.002), availability of care (83.4 vs 86.8, p=0.007) and psychosocial care (84.7 vs 87.6, p=0.04). No significant differences in caregiver satisfaction were found before or after adjustment (LSMpre: 83.1% (95%CI 80.9%-85.3%) vs. post: 82.4% (80.3%-84.5%), p=0.56))
Conclusions: Our data suggest that the implementation of PC guidelines significantly improved patient satisfaction following traumatic injury, while maintaining robust caregiver satisfaction.
Aim: The authors aimed to evaluate the experiences of the relatives of dying people, both in regard to benefits and special needs, when supported by a mobile palliative care bridging service (MPCBS), which exists to enable dying people to stay at home and to support patients' relatives.
Design: A cross-sectional survey.
Methods: A standardised survey was performed, asking 106 relatives of dying people about their experiences with the MPCBS (response rate=47.3%). Descriptive statistics were analysed using SPSS 23.
Findings: Many relatives (62.5%) reported that their dying relations when discharged from a facility to stay at home were not symptom-free. The MPCBS helped relatives maintain home care, and this was reported to be helpful. Support provided by the MPCBS made it easier for 77.6% of relatives to adjust care as soon as situations changed, and helped ensure that symptoms could be better controlled, at least for 68.2% of relatives. Younger relatives felt more encouraged by the MPCBS to care for their relatives dying at home.
Context: Previous work has found that facilitated advance care planning (ACP) interventions are effective in increasing ACP uptake among patients with severe respiratory disease.
Objectives: The objective of this study was to investigate whether a nurse-led, facilitated ACP intervention among participants with severe respiratory disease impacts self-reported or clinical outcomes.
Methods: A multicenter, open-label, patient-preference, randomized controlled trial of a nurse-led facilitated ACP intervention was performed. Outcome measures included self-report scales (health care satisfaction and EQ-5D-5L health-related quality of life at three- and six-month follow-up), 12-month mortality, and health care utilization during the final 90 days of life.
Results: One hundred forty-nine participants were recruited across two study settings (metropolitan tertiary hospital respiratory department and rural sites) and 106 were allocated to receive the ACP intervention. There was no effect of the intervention on satisfaction with health care, health-related quality of life, or 12-month mortality rates. Among those participants who died during the follow-up period (N = 54), those allocated to the ACP intervention had significantly fewer outpatient consultations (7.51 vs. 13.6, P < 0.001). There were no changes in emergency department attendances, total hospital admissions or length of stay, or home nursing visits. Among those allocated to the ACP intervention, there was a reduced length of stay in acute hospital settings (7.76 vs. 11.5 nights, P < 0.001) and increased length of stay in palliative hospital settings (5.54 vs. 2.08, P < 0.001) during the final 90 days of life.
Conclusion: A facilitated ACP intervention among patients with severe respiratory disease did not have an impact on satisfaction, health-related quality of life, or 12-month mortality rate. Facilitated ACP may be associated with a different type of health care utilization during the end-of-life period.
OBJECTIVE: To identify and synthesise existing literature exploring the impact of relational and informational continuity of care on preferred place of death, hospital admissions and satisfaction for palliative care patients in qualitative, quantitative and mixed methods literature.
DESIGN: A mixed methods rapid review.
METHODS: PUBMED, PsychINFO, CINAHL were searched from June 2008 to June 2018 in order to identify original peer reviewed, primary qualitative, quantitative or mixed methods research exploring the impact of continuity of care for people receiving palliative care. Synthesis methods as outlined by the Cochrane Qualitative and Implementation Methods Group were applied to qualitative studies while meta-analyses for quantitative data were planned.
OUTCOMES: The impact of interventions designed to promote continuity of care for people receiving palliative care on the following outcomes was explored: achieving preferred place of death, satisfaction with care and avoidable hospital admissions.
RESULTS: 18 eligible papers were identified (11 qualitative, 6 quantitative and 1 mixed methods papers). In all, 1951 patients and 190 family caregivers were recruited across included studies. Meta-analyses were not possible due to heterogeneity in outcome measures and tools used. Two studies described positive impact on facilitating preferred place of death. Four described a reduction in avoidable hospital admissions. No negative impacts of interventions designed to promote continuity were reported. Patient satisfaction was not assessed in quantitative studies. Participants described a significant impact on their experiences as a result of the lack of informational and relational continuity.
CONCLUSIONS: This rapid review highlights the impact that continuity of care can have on the experiences of patients receiving palliative care. The evidence for the impact of continuity on place of death and hospital admissions is limited. Methods for enhancing, and recording continuity should be considered in the design and development of future healthcare interventions to support people receiving palliative care.
OBJECTIVE: Although the psychometric properties of the Family Satisfaction with End-of-Life Care measure have been examined in diverse settings internationally; little evidence exists regarding measurement equivalence in Hispanic caregivers. The aim was to examine the psychometric properties of a short-form of the FAMCARE in Hispanics using latent variable models and place information on differential item functioning (DIF) in an existing family satisfaction item bank.
METHOD: The graded form of the item response theory model was used for the analyses of DIF; sensitivity analyses were performed using a latent variable logistic regression approach. Exploratory and confirmatory factor analyses to examine dimensionality were performed within each subgroup studied. The sample included 1,834 respondents: 317 Hispanic and 1,517 non-Hispanic White caregivers of patients with Alzheimer's disease and cancer, respectively.
RESULTS: There was strong support for essential unidimensionality for both Hispanic and non-Hispanic White subgroups. Modest DIF of low magnitude and impact was observed; flagged items related to information sharing. Only 1 item was flagged with significant DIF by both a primary and sensitivity method after correction for multiple comparisons: "The way the family is included in treatment and care decisions." This item was more discriminating for the non-Hispanic, White responders than for the Hispanic subsample, and was also a more severe indicator at some levels of the trait; the Hispanic respondents located at higher satisfaction levels were more likely than White non-Hispanic respondents to report satisfaction.
SIGNIFICANCE OF RESULTS: The magnitude of DIF was below the salience threshold for all items. Evidence supported the measurement equivalence and use for cross-cultural comparisons of the short-form FAMCARE among Hispanic caregivers, including those interviewed in Spanish.
PURPOSE: The purpose of this study was to investigate the relationship between social support (from personal and workplace sources) and psychological distress (depression, anxiety, and stress symptoms), as well as to examine the mediating role of satisfaction with work-family balance among hospice nurses.
DESIGN AND METHOD: A cross-sectional study design was utilized with a sample of 90 hospice nurses from the southern United States. Participants completed online surveys, including (a) the Depression, Anxiety, and Stress Scale (DASS-21), (b) loosely adapted items from the Affectivity, Burnout, and Absenteeism Scales, and (c) Satisfaction with Work-Family Balance Scale.
FINDINGS: Workplace social support, not personal social support, was associated with lower psychological distress, and satisfaction with work-family balance mediated the relationship between workplace social support and depression symptoms, a component of psychological distress.
CONCLUSIONS: Hospice nurses' social support in the workplace and their satisfaction with the balance between their work and family lives play a role in supporting their mental health.
CLINICAL RELEVANCE: Hospice nurses may benefit from programs fostering the creation of workplace-based interpersonal relationships.
Objectif de l’étude: Un travail d’évaluation globale de la satisfaction des patients pris en charge par le réseau de soins palliatifs Ensemble a été initié entre 2014 et 2016 à travers trois études simultanées recueillant le point de vue des proches et des professionnels intervenant dans la prise en charge du patient dans une démarche d’amélioration continue de la qualité des soins. L’objectif principal de cette étude était la mise en évidence de critères de satisfaction pour lesquels des réponses significativement différentes ont été observées selon le statut du répondant aux enquêtes et qui soulignerait l’importance des regards croisés dans les études de satisfaction en soins palliatifs.
Matériel et méthode: Les taux de satisfaction pour des critères de qualités validés d’un réseau de soins palliatifs communs à deux études rétrospectives observationnelles quantitatives interrogeant les proches de patients et les professionnels de santé ont été comparés.
Résultats: Soixante-quatorze pour cent des proches et 26 % des professionnels inclus ont répondu. La comparaison des taux de satisfaction a mis en évidence des critères pour lesquels les réponses des proches et des professionnels étaient similaires et des critères plus subjectifs pour lesquels les réponses étaient significativement différentes (perception du réseau comme soutien pour l’entourage [p<0,001], vécu de choses importantes en fin de vie [p< 0,001], respect du choix du lieu de décès [p=0,007]).
Conclusion: Cette étude a mis en évidence des critères pour lesquels il semble pertinent de multiplier les points de vue dans les enquêtes de satisfaction en soins palliatifs afin d’obtenir des réponses au plus proche du vécu des patients en fin de vie.
This work aims to integrate previous research perspectives on terminal well-being decline and partner bereavement by investigating the codevelopment of life satisfaction in the years preceding the death of one partner. We analyzed longitudinal data from the German Socio-Economic Panel Study (N = 1,450 couples) and applied dyadic multilevel models to estimate both partners' trajectories of life satisfaction and to reveal the pathways of well-being transmission in couple members approaching [partner] death. Findings were compared with a propensity-score-matched control sample of couples in which neither partner died during the study. We found that to-be-deceased and to-be-bereaved partners experienced increasing disparities in their trajectories of life satisfaction in the years before [partner] death: Although both partners exhibited significant and accelerated declines in life satisfaction, these declines were more pronounced in to-be-deceased individuals. In the control sample, we also identified significant and accelerated declines in life satisfaction but these declines were less intense and they did not differ between partners. Regarding between-partner correlations, we observed that couples approaching [partner] death experienced weaker interdependencies in their declines of life satisfaction. Finally, and concerning the pathways of well-being transmission, we found that life satisfaction was significantly transmitted between partners and the strength of this effect did not differ between the samples. These findings suggest that the years before [partner] death are characterized by distinctive patterns of change and interdependence in life satisfaction. Future studies may explore the sources of increasing between-partner disparities in life satisfaction in an end-of-life relationship context.
Context: Despite the preference to pass away at home, many dementia patients die in institutions, resulting in a paucity of studies examining end-of-life care outcomes in the home setting.
Objective: To identify modifiable factors associated with the comfort of dementia patients dying at home and families’ satisfaction with care.
Methods: This is a prospective cohort study conducted from October 2014 to April 2019 in Singapore. Dementia patients at Stage 7 on the Functional Assessment Staging Scale, with albumin<35g/L, enteral feeding or pneumonia were recruited from a palliative homecare programme. Independent variables included demographics, medical information and care preferences. The Comfort Assessment in Dying with Dementia scale assessed dying patients’ comfort while the Satisfaction with Care at the End-of-Life in Dementia scale evaluated family caregivers’ satisfaction two months post-bereavement. Gamma regression identified factors independently associated with comfort and satisfaction.
Results: The median age of 202 deceased patients whose comfort was assessed was 88 years. Anti-cholinergic prescription (60.4% of patients) [ß (95% CI) = 1.823 (0.660–2.986), P = 0.002] was positively associated with comfort, whereas opioid prescription (89.6%) [ß (95% CI) = -2.179 (-4.107 to -0.251), P = 0.027] and >1 antibiotic courses used in the last two weeks of life (77.2%) [ß (95% CI) = -1.968 (-3.196 to -0.740), P = 0.002] were negatively associated. Independent factors associated with families' satisfaction with care were comfort [ß (95% CI) = 0.149 (0.012–0.286), P = 0.033] and honoring of medical intervention preferences (96.0%) [ß (95% CI) = 3.969 (1.485–6.453), P = 0.002].
Conclusion: Achieving comfort and satisfaction with care for dementia patients dying at home involves an interplay of modifiable factors. Honouring medical intervention preferences, such as those with palliative intent associated with patients’ comfort determined families’ satisfaction with care.
A death with dignity is influenced by the quality of care offered to patients. The objective of this study was to identify, through the firsthand experiences and insights of family caregivers, the key elements related to the care offered to patients with a terminal illness at the end of life. This multicenter qualitative study was based on the paradigm of hermeneutic phenomenology. Participants were relatives of patients with terminal illness who had been identified as primary caregivers. Five discussion groups and 41 in-depth interviews were organized with a total of 81 participants. The content of the interviews was analyzed based on the methods developed by Giorgi (J Phenom Psychol 1997;28(2):235-260). The results indicate the existence of 3 dimensions: the caregiver’s suffering, compassion satisfaction with the care provided, and the support of health care professionals. Understanding the experiences of family members providing end-of-life care allows improved care and provides dignity in death. Health and social systems must provide comprehensive assistance covering the different aspects of needed care. Health professionals occupy a privileged position in the care of these patients and their families.
OBJECTIVES: To determine the satisfaction of relatives of deceased patients with the care received in a palliative care unit (PCU) and compare it with cases in which a team with specific psychological care were not involved.
MATERIAL AND METHODS: An anonymous survey (n=202) was administered to the relatives (response rate, 42.1%), which evaluated 9 issues related to the process of dying and the overall assessment of the care.
RESULTS: The overall satisfaction was high (mean score of 9.22); the score for the full team was 9.40, while that of the team without the psychologist was 8.40 (P=.005). The items that scored highest were "team availability", "information received" and "assistance for facing the disease", followed by "pain control", "peaceful death", "assistance for patient-family communication", "grief support" and "quality of life".
CONCLUSIONS: Based on the relatives' assessment, the hospital PCU teams help increase the quality of care at the end of life.