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.
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/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.
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.
BACKGROUND: Many hospitalized older adults require family surrogates to make decisions, but surrogates may perceive that the quality of medical decisions is low and may have poor psychological outcomes after the patient's hospitalization.
OBJECTIVE: To determine the relationship between communication quality and high-quality medical decisions, psychological well-being, and satisfaction for surrogates of hospitalized older adults.
DESIGN: Observational study at three hospitals in a Midwest metropolitan area.
PARTICIPANTS: Hospitalized older adults (65+ years) admitted to medicine and medical intensive care units who were unable to make medical decisions, and their family surrogates. Among 799 eligible dyads, 364 (45.6%) completed the study.
MAIN MEASURES: Communication was assessed during hospitalization using the information and emotional support subscales of the Family Inpatient Communication Survey. Decision quality was assessed with the Decisional Conflict Scale. Outcomes assessed at baseline and 4-6 weeks post-discharge included anxiety (Generalized Anxiety Disorder-7), depression (Patient Health Questionnaire-9), post-traumatic stress (Impact of Event Scale-Revised), and satisfaction (Hospital Consumer Assessment of Healthcare Providers and Systems).
KEY RESULTS: The mean patient age was 81.9 years (SD 8.32); 62% were women, and 28% African American. Among surrogates, 67% were adult children. Six to eight weeks post-discharge, 22.6% of surrogates reported anxiety (11.3% moderate–severe anxiety); 29% reported depression, (14.0% moderate–severe), and 14.6% had high levels of post-traumatic stress. Emotional support was associated with lower odds of anxiety (adjusted odds ratio [AOR] = 0.65, 95% CI 0.50, 0.85) and depression (AOR = 0.80, 95% CI 0.65, 0.99) at follow-up. In multivariable linear regression, emotional support was associated with lower post-traumatic stress (ß = -0.30, p = 0.003) and higher decision quality (ß = -0.44, p < 0.0001). Information was associated with higher post-traumatic stress (ß = 0.23, p = 0.022) but also higher satisfaction (ß = 0.61, p < 0.001).
CONCLUSIONS: Emotional support of hospital surrogates is consistently associated with better psychological outcomes and decision quality, suggesting an opportunity to improve decision making and well-being.
Several studies have highlighted the significant role of families in end-of-life care. Carers' well-being may depend on how they experience the care and support provided to their loved ones. This study was conducted to investigate family caregivers' assessment of specialized end-of-life care in a sample of 119 close family members in Iceland. The response rate was 58.8% (n = 70). Furthermore, the aim was to assess the psychometric characteristics of the Icelandic version of Family Assessment of Treatment at the End of Life (FATE). Descriptive statistics were used to describe the characteristics of the data. Results indicate that good communication and understanding of all parties concerned are the foundation for family caregivers' satisfaction with end-of-life care. Participants were generally satisfied with the care provided, whereas some important aspects of care were rated as excellent. Evaluation of management of symptoms reported in this study should be given specific attention in future studies considering its unsatisfactory outcomes. Nurses need to be aware of the impact that physical suffering of the patient might have on the family caregivers. The Icelandic version of the Family Assessment of Treatment at the End of Life instrument is a psychometrically sound instrument useful for measuring caregivers' satisfaction with service provided at the end of life, although modifications would improve the instrument for use on this population.
Job satisfaction among hospice and palliative nurses is important as turnover and a dissatisfied workforce impact the work environment and the care provided to seriously ill patients and their families. This article reports the results of a nationwide survey of 633 hospice and palliative nurses evaluating job satisfaction, intent to leave, job stressors, suggested work improvements, and self-care strategies. Statistically significant correlations were found between the Home Healthcare Job Satisfaction Scale and subscales and the individual’s self-rating of overall job satisfaction, likelihood of leaving the job, and thoughts of quitting. Multiple regression revealed a significant positive association between salary and overall job satisfaction, relationship with the organization, professional pride, autonomy, and control. A grounded theory approach was utilized to analyze qualitative data. Top job stressors identified were workload and problems with administration. Physical activities were cited as the most popular for self-care. Results indicate that most participants were highly satisfied with their work, but almost half think of quitting some or all of the time, indicating dissatisfaction with the work environment. Respondents suggested that employers increase recognition and salary, create a more positive work environment, decrease workload, and focus on patient needs rather than profits.
OBJECTIVE: How do caregivers' life satisfaction shift upon the recovery of an ill spouse? Paradoxically, there is a greater increase in life satisfaction upon death than recovery of a spouse. Our analysis explores this paradox.
METHOD: We follow the two groups of exiting caregivers longitudinally for four years from when the partner is still in need of care until the death (N= 152) or recovery (N= 112) of a previously ill partner, comparing their trajectory of life satisfaction. We use the years 2001-2016 of the German-Socio-Economic Panel Study and a growth-curve analysis.
RESULTS: Contrary to our expectations, bereaved caregivers experience a significantly stronger increase in life satisfaction than spouses whose partners recover from a serious illness, even when we stratify by age, gender and initial life satisfaction to account for significantly different subsample composition. Surprisingly, life satisfaction remains unchanged when the partner recovers. Only if a heavy burden in terms of unpaid care and housework hours or prior care need is lifted, do we observe an increase in life satisfaction among spouses with recovering partners, which is like the one experienced by bereaved caregivers.
OBJECTIVES: To explore the expressions of gratitude (EoG) received from patients and relatives and their influence on palliative care professionals (PCPs).
METHODS: A national online survey was sent to a representative of PCPs of each service listed in the national directory of palliative care (PC) services (n=272) (ie, hospital PC support team, hospice, paediatrics, etc). The questionnaire was pilot tested with experts. It comprised three sections: the overall perspective of receiving gratitude in the service, the personal experience of its influence and sociodemographic questions. A mailing schedule was designed to enhance the response rate.
RESULTS: 186 representatives from all over Spain completed the questionnaire (68% response rate). 79% of service representatives reported that they almost always received EoG. These came mainly from families (93%). These EoG were very often put on display (84%) and shared with other health professionals (HPs) involved in care (45%). EoG evoked positive feelings in the team members. Based on their experience, respondents attributed different functions to these EoG: increased professional satisfaction (89%), a source of support in difficult times (89%), mood improvement, encouragement to continue and rewards for effort (88%). Services, where gratitude was more frequently received, were associated with PCPs who more frequently reported being proud of their work (p=0.039, Pearson's correlation test).
CONCLUSIONS: Gratitude from patients and relatives was frequent and significant to those who work in PC. HPs considered that EoG offer multiple beneficial effects and also a protective role in their practice against distress and an increase in resilience skills.
PURPOSE: Oncologists cope with unique work characteristics that increase their risk of developing compassion fatigue-that is, burnout and secondary traumatic stress-and can result in reduced capacity and interest in being empathetic to the suffering of others (Stamm B. The concise ProQOL manual, 2010). At the same time, oncologists can experience compassion satisfaction-that is, the positive aspects of caring. This study explored the associations of compassion fatigue and compassion satisfaction with oncologists' grief and sense of failure beyond their reported exposure to suffering and death.
METHODS: Seventy-four oncologists completed self-administered questionnaires examining compassion fatigue, compassion satisfaction, grief, exposure to suffering and death, and sense of failure.
RESULTS: The oncologists reported that they face the loss of approximately 50% of their patients, and that their patients suffer from profound emotional and physical pain. High levels of compassion fatigue and grief, and moderate levels of sense of failure, were reported. Findings showed a lack of association between exposure to suffering and death and compassion fatigue and satisfaction. However, grief and sense of failure were found to predict both aspects of compassion fatigue: secondary traumatic stress (p < 0.001, p < 0.003, respectively) and burnout (p < 0.002, p < 0.025, respectively).
CONCLUSIONS: These results highlight the importance of the oncologists' subjective experiences of grief and sense of failure, beyond their reports of exposure to suffering and death, in terms of their levels of compassion fatigue. Implications of these findings include the need to develop interventions for oncologists that will allow them to acknowledge, process, and overcome negative experiences of failure and grief.