INTRODUCTION: Systematic integration of palliative care in a surgical setting is important, but has yet to be achieved. Despite evidence of early palliative care improving patients' quality of life, hospice utilization remains low. Through an integrated palliative care-urology clinic, we aim to assess the effect of early outpatient palliative care on hospice utilization, health-related quality of life (HRQOL) and satisfaction in patients with advanced urological cancers.
METHODS: Participants were recruited from 2012 through 2016 in the Greater Los Angeles Veterans Affairs Hospital. We partnered with palliative care clinicians to develop an integrated urology-palliative care clinic, where participants were seen by the palliative care team on the same day as their urological visit. The 12-item Short-Form Survey, Patient Satisfaction Questionnaire Short-Form, Patient Health Questionnaire, and Brief Pain Inventory were administered at initial and subsequent visits. Follow-up questionnaire results were compared between baseline and the 2 follow-up visits, and hospice utilization rates were assessed.
RESULTS: Fifty-three participants completed baseline questionnaires. Of those 22 (42%) patients completed at least one follow-up assessment. The median time for the first and second follow-up visits was 2.9 and 7.8 months, respectively. There were no significant differences in HRQOL and satisfaction between baseline and subsequent follow-up visits. A total of 36 (68%) of 53 participants who were enrolled at the start of the study were deceased. Of those, 29 (81%) expired within a home or inpatient hospice.
CONCLUSIONS: Rates of hospice use were high in an integrated palliative care-urology model. Health-related quality of life and satisfaction did not worsen over time.
OBJECTIVES: Recent evidence suggests that music therapy, a holistic method of care, potentially is beneficial for symptom management. This quality improvement project aimed to evaluate the effect of music therapy on symptom management and coping skills of patients receiving palliative care and to measure patient satisfaction with the therapy. A secondary aim was to evaluate staff perception of patient outcomes of music therapy services.
METHODS: Palliative care clinicians attended a 30-minute education session on music therapy before the project was initiated. Study participants were patients and their families who were cared for by the inpatient palliative care consulting service at Mayo Clinic (Rochester, Minnesota) from June 1 through December 31, 2016. Patients were eligible if they required ongoing management of pain and anxiety or needed adaptive coping strategies. Patients and families were asked to complete a survey after each music therapy session. Staff were asked to complete a survey after completion of the project.
RESULTS:: Music therapy was provided to 57 patients and 53 family members. Patient surveys indicated a decrease in anxiety and pain. All patients reported that music therapy facilitated stress relief, relaxation, pain relief, spiritual support, emotional support, and a general feeling of wellness. All participants recommended music therapy services for others. Palliative care clinicians reported that music therapy added value as a holistic service.
CONCLUSIONS:: In this quality improvement project, music therapy positively affected multiple domains of well-being for patients receiving palliative care.
Introduction: Du fait de la toxicité veineuse périphérique des produits utilisés, la pose d’une chambre implantable s’intègre dans la prise en charge globale d’un patient devant bénéficier d’une chimiothérapie anticancéreuse curative ou palliative. Si ce geste peut apparaître anodin car réalisé quotidiennement, il reste souvent un élément marquant dans l’histoire du patient du fait de son retentissement tant physique que psychologique. Le but de cette étude était d’évaluer le niveau d’anxiété préopératoire et la satisfaction des patients ayant bénéficié de cette intervention.
Méthodes: Nous avons mené une étude monocentrique rétrospective basée sur un questionnaire comportant 28 questions à choix multiples et une question libre. Le questionnaire a été envoyé par voie postale à l’ensemble des patients ayant bénéficié de la pose d’une chambre implantable entre le 01/01/2016 et le 31/12/2016. Les questions exploraient les phases préopératoire (anxiété et information), peropératoire (douleur et prise en charge) et postopératoire (douleur, prise en charge et satisfaction).
Résultats: Quarante-huit questionnaires ont été reçus et analysés ce qui représente un taux de participation de 40 %. Trente-quatre patients (70 %) étaient des femmes. L’âge moyen était de 60±19 ans. Pour 35 patients (73 %), il s’agissait de leur première intervention de ce type. Avant l’opération, le niveau médian d’anxiété était estimé à 5/10 [extrêmes : 2–8]. Quarante-deux patients (88 %) avaient reçu une information préalable à la réalisation du geste avec un niveau médian de satisfaction par rapport à cette information de 9/10 [extrêmes : 8–10]. La qualité médiane de l’accueil en salle d’opération était estimée à 9/10 [extrêmes : 8–10], la qualité du séjour peropératoire à 10/10 [extrêmes : 8–10] et le niveau médian d’anxiété au décours du geste à 1/10 [extrêmes : 0–5]. Douze patients (25 %) ont ressenti des douleurs d’une intensité moyenne cotée à 1±2/10 sur l’échelle numérique. Après l’intervention, 19 patients (40 %) ont ressenti des douleurs d’une intensité médiane cotée à 2/10 [extrêmes : 0–5] sur l’échelle numérique et traitées par des antalgiques de niveau 1 dans 100 % des cas. La satisfaction médiane vis-à-vis de l’accompagnement au cours du séjour hospitalier pour la mise en place de la chambre implantable a été évaluée à 9/10 [extrêmes : 8–10], à 10/10 [extrêmes : 8–10] pour la prise en charge anesthésique et à 9/10 [extrêmes : 7–10] pour la prise en charge globale au cours du séjour hospitalier.
Discussion: La mise en place d’une chambre implantable pour une chimiothérapie anticancéreuse reste un événement marquant dans l’histoire d’un patient, source d’anxiété préopératoire marquée. La satisfaction globale des patients quant à leur parcours de soin est bonne mais pourrait encore être améliorée. Une bonne relation "soignant–soigné" à toutes les étapes de la prise en charge et une fluidification du parcours de soins du patient sont probablement les éléments devant permettre d’améliorer plus encore la satisfaction des patients.
Despite the frequency, complexity, and intensity of communication that occurs between nurses, patients, and families, palliative care nurses often struggle with end-of-life communication. The primary goal of this quality improvement project was to increase nurse confidence and satisfaction engaging in end-of-life communication following the implementation of the COMFORT model; the secondary goal was to improve patient-family satisfaction with care provided in the palliative care unit. Fourteen palliative care nurses attended a 4-hour course to learn the tenets of the COMFORT model and practice through role-play exercises. A repeated-measures design was used to measure nurse confidence and satisfaction precourse, postcourse, and 3 months postcourse. A between-subjects pre-post design was used to compare family satisfaction survey scores in the 3-month period before versus the 3 months after implementation. Analysis revealed a statistically significant increase in all measures of nurse confidence and satisfaction from precourse to postcourse and from precourse to 3 months postcourse. There was no statistical difference between the family satisfaction survey scores before versus after training, although survey results were generally high at baseline and most respondents rated palliative services with the best possible response. This project demonstrates that COMFORT model training increased confidence and satisfaction of palliative care nurses engaged in end-of-life communication and demonstrates potential for use in other clinical areas that do not specialize in end-of-life nursing (eg, critical care) but find themselves in need of the communications skills to address end-of-life care.
BACKGROUND: Advance care planning (ACP) has been suggested to improve the quality of life (QoL) and mental wellbeing in severely ill patients and their relatives.
AIM: To investigate the effects of ACP among patients with lung, heart and cancer diseases with an estimated life-span of up to 12 months.
METHODS: Patients and relatives were randomised into two groups: one receiving usual care and one receiving ACP and usual care. Themes from the ACP discussion were documented in patients' electronic medical file. Participants completed self-reported questionnaires four to five weeks after randomisation.
FINDINGS: In total, 141 patients and 127 relatives participated. No significant differences were found according to outcomes. However, patients with non-malignant diseases had the highest level of anxiety and depression; these patients seemed to benefit the most from ACP, though not showing statistically significant results.
CONCLUSION: No significant effects of ACP among patients with lung, heart, and cancer diseases and their relatives regarding HRQoL, anxiety, depression, and satisfaction with healthcare were found.
Objective: Healthcare professionals who work in palliative care units face stressful life events on a daily basis, most notably death. For this reason, these professionals must be equipped with the necessary protective resources to help them cope with professional and personal burnout. Despite the well-recognized importance of the construct "meaning of work," the role of this construct and its relationship with other variables is not well-understood. Our objective is to develop and evaluate a model that examines the mediating role of the meaning of work in a multidisciplinary group of palliative care professionals. Using this model, we sought to assess the relationships between meaning of work, perceived stress, personal protective factors (optimism, self-esteem, life satisfaction, personal growth, subjective vitality), and sociodemographic variables.
Method: Professionals (n = 189) from a wide range of disciplines (physicians, psychologists, nurses, social workers, nursing assistants, physical therapists, and chaplains) working in palliative care units at hospitals in Madrid and the Balearic Islands were recruited. Sociodemographic variables were collected and recorded. The following questionnaires were administered: Meaning of Work Questionnaire, Perceived Stress Questionnaire, Life Orientation Test-Revised, Satisfaction with Life Scale, Subjective Vitality Scale, Rosenberg Self-Esteem Scale, and the Personal Growth Scale.
Result: The explanatory value of the model was high, explaining 49.5% of the variance of life satisfaction, 43% of subjective vitality, and 36% of personal growth. The main findings of this study were as follow: (1) meaning of work and perceived stress were negatively correlated; (2) optimism and self-esteem mediated the effect of stress on the meaning attached to work among palliative care professionals; (3) the meaning of work mediated the effect of stress on subjective vitality, personal growth, and life satisfaction; and (4) vitality and personal growth directly influenced life satisfaction.
Significance of results: The proposed model showed a high explanatory value for the meaning professionals give to their work and also for perceived stress, personal protective factors, and sociodemographic variables. Our findings could have highly relevant practical implications for designing programs to promote the psychological well-being of healthcare professionals.
Background: Patients with chronic heart failure (CHF) and patients with chronic obstructive pulmonary disease (COPD) are amenable to integrated palliative care (PC); however, despite the recommendation by various healthcare organizations, these patients have limited access to integrated PC services. In this study, we present the protocol of a feasibility prospective study that aims to explore if an "early integrated PC" intervention can be performed in an acute setting (cardiology and pulmonology wards) and whether it will have an effect on (i) the satisfaction of care and (ii) the quality of life and the level of symptom control of CHF/COPD patients and their informal caregivers.
Methods: A before-after intervention study with three phases, (i) baseline phase where the control group receives standard care, (ii) training phase where the personnel is trained on the application of the intervention, and (iii) intervention phase where the intervention is applied, will be carried out in cardiology and pulmonology wards in the University Hospital Leuven for patients with advanced CHF/COPD and their informal caregivers. Eligible patients (both control and intervention group) and their informal caregivers will be asked to complete the Palliative Outcome Scale, the CANHELP Lite, and the Advance Care Planning Questionnaire at the inclusion moment and 3 months after hospital discharge.
Discussion: The present study will assess the feasibility of carrying out PC-focused studies in acute wards for CHF/COPD patients and draw lessons for the further integration of PC alongside standard treatment. Further, it will measure the quality of life and quality of care of patients and thus shed light on the care needs of this population. Finally, it will evaluate the potential efficacy of the "early integrated palliative care" by comparing against existing practices..
OBJECTIVES: To examine family caregivers' experiences with end-of-life care for nursing home residents with dementia and associations with the residents dying peacefully.
DESIGN: A secondary data analysis of family caregiver data collected in the observational Dutch End of Life in Dementia (DEOLD) study between 2007 and 2010.
SETTING AND PARTICIPANTS: Data were collected at 34 Dutch nursing homes (2799 beds) representing the nation. We included 252 reports from bereaved family members of nursing home residents with dementia.
MEASURES: The primary outcome was dying peacefully, assessed by family members using an item from the Quality of Dying in Long-term Care instrument. Unpleasant experiences with end-of-life care were investigated using open-ended questions. Overall satisfaction with end-of-life care was assessed with the End-of-Life Satisfaction With Care (EOLD-SWC) scale, and families' appraisal of decision making was measured with the Decision Satisfaction Inventory. Associations were investigated with multilevel linear regression analyses using generalized estimating equations.
RESULTS: Families' reports of unpleasant experiences translated into 2 themes: neglect and lack of respect. Neglect involved facing inaccessibility, disinterest, or discontinuity of relations, and negligence in tailored care and information. Lack of respect involved perceptions of being purposefully disregarded, an insensitive approach towards resident and family, noncompliance with agreements, and violations of privacy. Unpleasant experiences with end-of-life care were negatively associated with families' perceptions of the resident dying peacefully. Families' assessment of their relative dying peacefully was positively associated with satisfaction with end-of-life care and decision making.
CONCLUSIONS/IMPLICATIONS: Families' reports of unpleasant experiences with end-of-life care may inform practice to improve perceived quality of dying of their loved ones. Humane and compassionate care and attention from physicians and other staff for resident and family may facilitate recollections of a peaceful death.
BACKGROUND: The Advanced Lung Disease Service is a unique, new model of integrated respiratory and palliative care, which aims to address the unmet needs of patients with advanced, non-malignant, respiratory diseases. This study aimed to explore patients' and carers' experiences of integrated palliative care and identify valued aspects of care.
METHODS: All current patients of the integrated service and their carers were invited to complete a confidential questionnaire by post or with an independent researcher.
RESULTS: Eighty-eight responses were received from 64 (80.0%) eligible patients and from 24 (60%) eligible carers. Most participants (84, 95.5%) believed the integrated service helped them to manage breathlessness and nearly all participants (87, 98.9%) reported increased confidence managing symptoms. One third of patients (34.4%) had received a nurse-led domiciliary visit, with nearly all regarding this as helpful. Most participants believed the integrated respiratory and palliative care team listened to them carefully (87, 98.9%) with opportunities to express their views (88, 100%). Highly valued aspects of the service were continuity of care (82, 93.2%) and long-term care (77, 87.5%). Three quarters of participants (66, 75.0%) rated their care as excellent, with 20.5% rating it as very good. Nearly all (87, 98.9%) participants reported that they would recommend the service to others.
CONCLUSIONS: Patients and carers expressed high levels of satisfaction with this model of integrated respiratory and palliative care. Continuity of care, high quality communication and feeling cared for were greatly valued and highlight simple but important aspects of care for all patients.
OBJECTIVE: Little is known about the associations between family satisfaction with end-of-life care and caregiver burden. We conducted a researcher-assisted questionnaire survey to clarify the impact of caregiver burden on family satisfaction and to determine the types of burden that decrease family satisfaction.
METHOD: Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively.
RESULTS: Our study subjects included 23 family caregivers. The mean scores on the FAMCARE Scale and the ZBI for the total population were 72.8 ± 11.2 and 22.8 ± 17.3, respectively, indicating moderate-to-high satisfaction and low-to-moderate burden. Caregiver burden had a strong negative correlation to family satisfaction with end-of-life care (Spearman's rho [ ] = -0.560, p = 0.005), which remained after adjustment for potential confounders (standardized beta [ß] = -0.563, p = 0.01). Several burden itemsâ€”including loss of control, personal time, social engagement with others, feeling angry with the patient, feeling that the patient wants more help than he/she needs, and a wish to leave the care to someone elseâ€”were associated with decreased satisfaction. The major cause of dissatisfaction for family members included the information provided regarding prognosis, family conferences with medical professionals, and the method of involvement of family members in care decisions.
SIGNIFICANCE OF RESULTS: Caregiver burden can be a barrier to family satisfaction with end-of-life care at home. A home care model focused on caregiver burden could improve end-of-life experiences for patients and family caregivers.
OBJECTIVE: To discover the experiences of end-of-life patients attended by the emergency services, through the discourse of the family caregivers who accompanied the family member in this care transit.
METHOD: A qualitative approach study, based on the paradigm of hermeneutical phenomenology. In total, 81 family caregivers participated. The techniques used were the in-depth interview and the discussion group, with a total of 5 discussion groups and 41 interviews. The period of data collection was carried out between January 2013 and June 2014.
RESULTS: In the network of discourses obtained with respect to "Urgent Care", all the codes were grouped in relation to a single argumentative line: deficiencies in urgent care. Among them, we found different dimensions that are established depending on the different times of care, or the different determinant aspects of these deficiencies: disorganization of the care received, lack of experience of the professionals in emergencies, application of general protocols in the emergency services, inadequate care in the treatment received, delays in emergency care.
CONCLUSIONS: In general, we highlight the dissatisfaction of the family members with respect to the care received from the emergency services. The needs of these types of situation are not covered from these services and are of low quality. Therefore, it is necessary to reorient the care protocols for these patients.
BACKGROUND AND AIMS: Children with severe spinal muscular atrophy have complex care needs due to progressive muscle weakness, eventually leading to respiratory failure. To design a care system adapted to families' needs, more knowledge about parents' experience of care and its coordination between settings is required. This study explores (1) whether parents felt that health professionals took every opportunity to help the child feel as good as possible, (2) parents' satisfaction with various care settings, and (3) parents' satisfaction with coordination between settings.
METHODS: Data derive from nationwide Swedish and Danish surveys of bereaved and nonbereaved parents of children with severe spinal muscular atrophy born between 2000 and 2010 in Sweden and 2003 and 2013 in Denmark (N = 95, response rate = 84%). Descriptive statistics and content analysis were used.
RESULTS: Although most of the parents reported that care professionals had taken every opportunity to help the child feel as good as possible, one-third reported the opposite. Bereaved parents were significantly more satisfied with care than nonbereaved (81% vs 29%). The children received care at many different locations, for all of which parents rated high satisfaction. However, some were dissatisfied with care coordination, describing lack of knowledge and communication among staff, and how they as parents had to take the initiative in care management.
CONCLUSIONS: This study highlights the importance of improving disease-specific competence, communication and knowledge exchange among staff. For optimal care for these children and families, parents should be included in dialogues on care and staff should be more proactive and take care management initiatives.
BACKGROUND: Studies evaluating the end-of-life care for longer periods of illness trajectories and in several care places are currently lacking. This study explored bereaved family members' satisfaction with care during the last three months of life for people with advanced illness, and associations between satisfaction with care and characteristics of the deceased individuals and their family members.
METHODS: A cross-sectional survey design was used. The sample was 485 family members of individuals who died at four different hospitals in Sweden.
RESULTS: Of the participants, 78.7% rated the overall care as high. For hospice care, 87.1% reported being satisfied, 87% with the hospital care, 72.3% with district/county nurses, 65.4% with nursing homes, 62.1% with specialized home care, and 59.6% with general practitioners (GPs). Family members of deceased persons with cancer were more likely to have a higher satisfaction with the care. A lower satisfaction was more likely if the deceased person had a higher educational attainment and a length of illness before death of one year or longer.
CONCLUSION: The type of care, diagnoses, length of illness, educational attainment, and the relationship between the deceased person and the family member influences the satisfaction with care.
General well-being is known to deteriorate sharply at the end of life. However, it is an open question how rates of terminal change differ across affective and evaluative facets of well-being and if individual difference correlates operate in facet-specific ways. We examined how discrete affective states (happy, angry, fearful, sad) and satisfaction with key life domains (health, leisure, family) change as people approach death and how differences in end-of-life trajectories are related to sociodemographic (age, gender, education), physical health (disability, body mass index, physician visits), and psychosocial characteristics (perceived control, social orientation, living with a partner). We applied growth models to 9-year annual longitudinal data of 864 participants (age at death: M = 75 years, 41% women) from the nationwide German Socio-Economic Panel (SOEP). Findings revealed commonalities and specificities in terminal change: Six of seven facets became increasingly fragile late in life (6 to 35 times steeper terminal change than age change), but at vastly different rates of change (e.g., steep declines in happiness and satisfaction with health vs. stability in anger) and at different levels at which changes occurred. Commonalities and differences also emerged for the correlates: Those who perceived more control over their lives experienced generally more favorable late-life affect and satisfaction trajectories, whereas other correlates operated in more facet-specific ways. For example, participants living with a partner were happier and more satisfied with family life throughout their last years, but also reported more fear and steeper increases in sadness, a picture of bittersweet emotions at the end of life.
Family caregiver satisfaction with end-of-life (EOL) care is key to better understanding patient EOL experiences. In measuring family caregiver satisfaction, it is important to conceptualize what is considered a “good death” or “good dying process.” Understanding the bereaved family caregiver’s satisfaction can help lead to improved EOL care for patients. In particular, families of patients who die in their preferred location are more likely to be satisfied with EOL care provided.
Most people can identify the elements of their loved one’s experience of dying that were “satisfactory.” Often, these center around using less-aggressive medical care and earlier hospice referrals
Background: Patients in palliative care suffer variously due to underassessment of needs and suboptimal intervention, coupled with lack of access to palliative care. This study attempts to identify effective coping strategies which lead to life satisfaction, among those afflicted with terminal cancer.
Materials and Methods: This observational, cross-sectional study was carried out among terminally-ill cancer patients undergoing palliative care. Cancer patients receiving palliative care who give consent and were aged 18 years or older were included in the study. Those with cognitive deficits, delirium, or psychosis were excluded from the study. COPE scale, Temporal Satisfaction with Life Scale, and sociodemographic Performa were administered and analyzed. Pearson's r correlation coefficient test and multiple linear regression analyses were used to evaluate correlation and effect of coping strategies on life satisfaction.
Results: Religious coping was the most frequently used coping strategy by patients, followed by acceptance. Females showed higher problem-focused coping, whereas males had higher emotion-focused and avoidant coping strategies. Females manifested more religious coping. Males showed more acceptance of their illness. Those without a partner had significantly higher emotion-focused coping strategies and higher religious coping. Income, social support, and problem-oriented coping were positively related to quality of life. Life satisfaction showed significant negative correlation with denial, substance use, and venting utilized as coping methods.
Conclusion: Problem-focused coping (religious coping and acceptance) was found to be more effective than other methods. Patients in palliative care could be instructed for the use of problem-focused coping. Such training might enhance their life satisfaction, helping them experience greater control over the course of illness.
OBJECTIVES: To describe the symptoms experienced in the last year of life by people with heart disease, their relation to quality of life, and informal carers' satisfaction with hospital services.
METHODS: Interview survey of informal carers of 600 patients aged 15 and over, approximately ten months after their death from heart disease in 1990 in 20 English health districts. The districts, while self-selected, were nationally representative in social characteristics and indicators of health service provision and use.
RESULTS: Pain, dyspnoea and low mood were reported to have been experienced by more than half the patients in their last year of life. Anxiety, constipation, nausea/vomiting, urinary incontinence and faecal incontinence, although not suffered by the majority of patients, also caused much distress. Hospital symptom control was reported to be limited: little or no symptom relief was reported for 35% patients with pain, 31% with constipation, 24% with dyspnoea and 24% with nausea/vomiting. Nevertheless, high levels of satisfaction with hospital staff were reported.
CONCLUSIONS: Patients dying from heart disease experience a wide range of symptoms, which are frequently distressing, and often last for more than six months. There is room for an improvement in palliative care for patients with heart disease in hospital.
Dementia is an increasingly recognised medical condition which, towards its later stages, leads to the manifestation of symptoms that often require palliation. Hospice admission for patients with dementia has been shown to increase caregiver satisfaction. Yet, admission can be harmful for the patient. This feature follows the case of one patient, Mr Smith, who was admitted to Royal Trinity Hospice (RTH) for symptom control, along with providing respite for his carers. Shortly into Mr Smith's admission, he became increasingly agitated and was ultimately discharged home. After investigating the cause of early discharge, it was concluded that the newly built, modernised private rooms were in fact very dissimilar to the homes of patients with dementia. Adapting the clinical environment to improve patient and carer satisfaction has been explored in numerous studies. Significant amendments used by hospices and care homes include bold signs and natural lighting to facilitate way-finding, in addition to vintage furnishings to create a sense of familiarity. Taking recent evidence into consideration, RTH designed a new dementia-friendly bay situated on the ground floor of its inpatient unit. Since then, many other patients with dementia have been admitted to the hospice, one being Mr Thomas. Unlike Mr Smith, Mr Thomas was much more relaxed during his admission and his wife commented on how pleased she was with his care. This feature demonstrates the importance of being receptive to feedback and identifying the need for change.
Background: Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families.
OBJECTIVE: Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services.
METHOD: Caregivers of patients receiving palliative care in services registered with Australia's Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey. The survey included the FAMCARE-2 and four items from the Ongoing Needs Identification: Caregiver Profile questionnaire.
RESULTS: Surveys were completed by 1,592 caregivers from 49 services. Most respondents reported high satisfaction and positive experiences. Caregivers receiving care from community-based palliative care teams were less satisfied with the management of physical symptoms and comfort (odds ratio [OR] = 0.29; 95% confidence interval [CI95%] = 0.14, 0.59), with patient psychological care (OR = 0.56; CI95% = 0.32, 0.98), and with family support (OR = 0.52; CI95% = 0.35, 0.77) than caregivers of patients in an inpatient setting. If aged over 60 years, caregivers were less likely to have their information needs met regarding available support services (OR = 0.98; CI95% = 0.97, 0.98) and carer payments (OR = 0.99; CI95% = 0.98, 1.00). Also, caregivers were less likely to receive adequate information about carer payments if located in an outer regional area (OR = 0.41; CI95% = 0.25, 0.64). With practical training, caregivers receiving care from community services reported inadequate information provision to support them in caring for patients (OR = 0.60; CI95% = 0.45, 0.81).
SIGNIFICANCE OF RESULTS: While our study identified caregivers as having positive and satisfactory experiences across all domains of care, there is room for improvement in the delivery of palliative care across symptom management, as well as patient and caregiver support, especially in community settings. Caregiver surveys can facilitate the identification and evaluation of both patients' and caregivers' experiences, satisfaction, distress, and unmet needs.
BACKGROUND: Family members of patients who die in an intensive care unit (ICU) may experience negative outcomes. However, few studies have assessed the effectiveness of bereavement care for families.
OBJECTIVE: To evaluate the effectiveness of bereavement follow-up on family members' anxiety, depression, posttraumatic stress, prolonged grief, and satisfaction with care.
METHODS: A cross-sectional, prospective pilot study of 40 family members of patients who died in 2 tertiary care ICUs. Those in the medical-surgical ICU received bereavement follow-up (bereavement group); those in the cardiac ICU received standard care (nonbereavement group). Both groups completed surveys 13 months after the death. Surveys included the Hospital Anxiety and Depression Scale, Impact of Event Scale-Revised, Family Satisfaction With Care in the Intensive Care Unit, Prolonged Grief Disorder, and a bereavement survey.
RESULTS: Of 30 family members in the bereavement group and 10 in the nonbereavement group, most were female and spouses, with a mean (SD) age of 60.1 (13.3) years. Significantly more participants in the nonbereavement group than in the bereavement group had prolonged grief. Posttraumatic stress, anxiety, depression, and satisfaction with care were not significantly different in the 2 groups. However, overall posttraumatic stress scores were higher in the nonbereavement group than the bereavement group, indicating a higher risk of posttraumatic stress disorder.
CONCLUSIONS: Bereavement follow-up after an ICU death reduced family members' prolonged grief and may also reduce their risk of posttraumatic stress disorder. This type of support did not have a measurable effect on depression or satisfaction with ICU care.