Burnout is common in physicians who care for patients with serious illness, with rates greater than 60% in some studies. Risk factors for burnout include working on small teams and/or in small organizations, working longer hours and weekends, being younger than 50 years, burdensome documentation requirements, and regulatory issues. Personal factors that can protect against burnout include mindfulness, exercise, healthy sleep patterns, avoiding substance abuse, and having adequate leisure time. Institutional and work factors that can buffer against burnout include working on adequately staffed teams, having a manageable workload, and minimally burdensome electronic health record documentation.
Complicated grief (CG) poses significant physical, psychological, and economic risks to bereaved family caregivers. An integrative review of the literature published 2009-2018 on CG associated with caregiving was performed using PubMed, PsychINFO, and Web of Science. The search returned 1428 articles, of which 32 were included in the review. Sixteen studies described risk and protective factors and 16 described interventions for CG. Caregiver-related risk factors included fewer years of education, depression, anxiety, poor physical health, and maladaptive dependency and attachment traits. Additional risk factors included lower perceived social support, family conflict at end-of-life, and family having difficulty accepting death. Care recipient-related risk factors are younger age, fear of death, and place of death. Protective factors included hospice utilization in reducing fear of death, high pre-bereavement spiritualty, and satisfaction with palliative care. Complicated grief treatment was the most widely-studied intervention. Social Workers and other clinicians can use this information to identify family caregivers at increased risk for CG and refer or implement an early intervention to lessen its impact.
Background: Optimizing quality of life (QoL) remains the central tenet of care in patients with incurable cancer; however, determinants of QoL are not clear. The objective of the current study was to examine which factors influence QoL in patients with incurable cancer.
Methods: A multicenter study of adult patients with advanced cancer was conducted in Ireland and the United Kingdom between 2011 and 2016. Data were collected from patients at study entry and included patient demographics, Eastern Cooperative Oncology Group performance status (ECOG-PS), nutritional parameters (the percentage weight loss [%WL]), muscle parameters assessed using computed tomography images (skeletal muscle index and skeletal muscle attenuation), inflammatory markers (modified Glasgow Prognostic score [mGPS]), and QoL data (the European Organization for Research and Treatment Quality-of-Life Questionnaire C-30). The relation between clinical, nutritional, and inflammatory parameters with QoL was assessed using the Spearman rank correlation coefficient and multivariate binary logistic regression. Components of the European Organization for Research and Treatment Quality-of-Life Questionnaire C-30 (physical function, fatigue, and appetite loss) and summary QoL scores were mean-dichotomized for the logistic regression analyses.
Results: Data were available for 1027 patients (51% men; median age, 66 years). Gastrointestinal cancer was most prevalent (40%), followed by lung cancer (26%) and breast cancer (9%). Distant metastatic disease was present in 87% of patients. The %WL, ECOG-PS, and mGPS were significantly correlated with deteriorating QoL functional and symptom scales (all P < .001). On multivariate regression analysis, >10% WL (odds ratio [OR], 2.69; 95% CI, 1.63-4.42), an ECOG-PS of 3 or 4 (OR, 14.33; 95% CI, 6.76-30.37), and an mGPS of 2 (OR, 1.58; 95% CI, 1.09-2.29) were independently associated with poorer summary QoL scores. These parameters were also independently associated with poorer physical function, fatigue, and appetite loss (all P < .05). Low skeletal muscle attenuation was independently associated with poorer physical functioning (OR, 1.67; 95% CI, 1.09-2.56), but muscle parameters were not independently associated with fatigue, appetite loss, or QoL summary scores.
Conclusions: The current findings indicate that QoL is determined (at least in part) by WL, ECOG-PS, and the systemic inflammatory response in patients with advanced cancer. Identifying early predictors of poor QoL may allow the identification of patients who may benefit from early referral to palliative and supportive care, which has been shown to improve QoL.
Identifying the degree of attitudes has a critical effect on the application of hospice and palliative care. However, studies on hospice and palliative care attitudes highlight only statistically significant outcomes and do not propose comprehensive conclusions or generalizations about attitudes. Therefore, we conducted a systematic review to synthesize and appraise articles that analyzed nurses' attitudes regarding palliative care services. After compiling, the finally selected 13 articles indicated that influencing factors on nurses' attitudes were experience in caring for the dying, career or education level, knowledge and education toward hospice and palliative care, religious belief, death (education and anxiety), and age. Most nurses and nursing students displayed positive cognition and attitudes, yet a low level of knowledge. These results show that an introduction of hospice and palliative care education and practical training in nursing curricula is necessary. And such implementation should take place within sanatoriums as well, where attending the terminally ill takes place at all times. Because hospice and palliative care is usually provided by a multidisciplinary team, it is necessary to identify which factors influence each member of the team likewise. It is anticipated this study will become a preliminary basis for such research.
BACKGROUND: Severe persistent mental illness (SPMI) currently affects an estimated 11.2 million adults in the United States (National Institute of Mental Health, 2019). Affected individuals are known to experience inequities in care, and on average, they die earlier than individuals without SPMI. Currently, little is known about hospice use among individuals with SPMI, including what factors contribute to the use of hospice services. OBJECTIVE: The aim of this integrated review was to identify factors associated with the use of hospice services by individuals with SPMI. STUDY DESIGN: A review of the available literature on this topic was performed in accordance with PRISMA guidelines. The databases Cumulative Index to Nursing and Allied Health Literature, PubMed, and PsycInfo were searched, and relevant records were identified. Ultimately, eight studies were identified and selected for analysis.
RESULTS: Themes illustrating the factors associated with hospice use and, within them, challenges to obtaining hospice care were discovered. The three themes identified within the eight studies were fragmentation of care, inadequate communication, and the need for advance care planning. These patterns indicated that multiple barriers to utilizing hospice care exist for individuals with SPMI when compared with the general population.
CONCLUSIONS: By recognizing and addressing factors influencing the use of hospice care, as well as barriers to receiving hospice, improved provision of timely end-of-life care that is consistent with individuals' preferences may be facilitated.
Background: Advanced cancer patients often die in hospital after receiving needless, aggressive treatment. Although palliative care improves symptom management, barriers to accessing palliative care services affect its utilisation, and such disparities challenge the equitable provision of palliative care. This study aimed to identify which factors are associated with inequitable palliative care service utilisation among advanced cancer patients by applying the Andersen Behavioural Model of Health Services Use.
Material and methods: This was a retrospective cohort study using administrative healthcare data. A total of 13,656 patients residing in the Lazio region of Italy, who died of an advanced cancer-related cause—either in hospital or in a specialised palliative care facility—during the period of 2012–2016 were included in the study. Potential predictors of specialised palliative service utilisation were explored by grouping the following factors: predisposing factors (i.e., individuals’ characteristics), enabling factors (i.e., systemic/structural factors) and need factors (i.e., type/severity of illness).
Results: The logistic hierarchical regression showed that older patients (odds ratio [OR] = 1.45; <0.0001) of Caucasian ethnicity (OR = 4.17; 0.02), with a solid tumour (OR = 1.87; <0.0001) and with a longer survival time (OR = 2.09; <0.0001) were more likely to be enrolled in a palliative care service. Patients who lived farther from a specialised palliative care facility (OR = 0.13; <0.0001) and in an urban area (OR = 0.58; <0.0001) were less likely to be enrolled.
Conclusion: This study found that socio-demographic (age, ethnicity), clinical (type of tumour, survival time) and organisational (area of residence, distance from service) factors affect the utilisation of specialised palliative care services. The fact that service utilisation is not only a function of patients’ needs but also of other aspects demonstrates the presence of inequity in access to palliative care among advanced cancer patients.
OBJECTIVE: To identify factors associated with referral to an exclusive palliative care unit (PCU) in patients with colorectal cancer (CRC).
METHODS: Retrospective cohort study with patients having CRC of both sexes treated at a hospital unit, aged = 20 years. Data were extracted from the medical records of pretreatment patients between January 2008 and August 2014. The outcome was referral to the PCU within 5 years. Logistic regression analyses were performed to assess whether sociodemographic, clinical, nutritional, and biochemistry data were associated to referral, generating odds ratios (OR), and 95% confidence intervals (CI).
RESULTS: Four hundred fifteen patients were evaluated. The Patient-Generated Subjective Global Assessment demonstrated a prevalence of malnutrition of 57.3%. One hundred one (24.3%) patients were referred to the PCU after 16.3 months (interquartile range: 7.2-33.5). These patients were more likely to be at an advanced stage of the disease and have malnutrition and exacerbated systemic inflammation. Tumor stage III and IV (OR: 2.05; 95% CI: 1.12-3.76) and neutrophil-to-lymphocyte ratio (NLR) =3 (OR: 1.89; 95% CI: 1.12-3.17) were predictors of an increased chance of referral to the PCU.
CONCLUSION: Advanced disease stage and NLR were associated with referral of patients with CCR to a PCU.
Family caregivers provide substantial care for patients with advanced cancer, while suffering from hidden morbidity and unmet needs. The objectives of this review were to examine risk factors associated with caregiving for patients with advanced cancer, evaluate the evidence for pertinent interventions, and provide a practical framework for palliative care of caregivers in oncology settings. We reviewed studies examining the association of factors at the level of the caregiver, patient, caregiver-patient relationship, and caregiving itself, with adverse outcomes. In addition, we reviewed randomized controlled trials of interventions targeting the caregiver, the caregiver-patient dyad, or the patient and their family. Risk factors for adverse mental health outcomes included those related to the patient's declining status, symptom distress, and poor prognostic understanding; risk factors for adverse bereavement outcomes included unfavorable circumstances of the patient's death. Among the 16 randomized trials, the most promising results showed improvement of depression resulting from early palliative care interventions; results for quality of life were generally nonsignificant or showed an effect only on some subscales. Caregiving outcomes included burden, appraisal, and competence, among others, and showed mixed findings. Only three trials measured bereavement outcomes, with mostly nonsignificant results. On the basis of existent literature and our clinical experience, we propose the CARES framework to guide care for caregivers in oncology settings: Considering caregivers as part of the unit of care, Assessing the caregiver's situation and needs, Referring to appropriate services and resources, Educating about practical aspects of caregiving, and Supporting caregivers through bereavement. Additional trials are needed that are powered specifically for caregiver outcomes, use measures validated for advanced cancer caregivers, and test real-world interventions.
BACKGROUND: Metastatic breast cancer (MBC) is generally incurable, but patients can survive longer than those with other cancer types. Treatment strategies for MBC are complex, and it is difficult to establish evidence of efficacy since symptoms and patient backgrounds vary markedly. Some patients struggle to decide where to receive end-of-life care, despite palliative care intervention, and some die in unexpected places. With the aim of ascertaining the best way to intervene on behalf of patients with end-stage breast cancer, we retrospectively examined interventions provided by our palliative care team. We investigated factors influencing the decision-making processes of patients with MBC regarding end-of-life care locations and where patients actually died.
METHODS: Clinical records of 44 patients with MBC, all Japanese women, who received palliative care interventions at our hospital, were retrospectively investigated. We examined factors, such as age, possibly impacting decision-making processes regarding the final location and actual place of death.
RESULTS: Thirty-five (80%) patients were able to decide where to receive end-of-life care, while the others were not. For these 35 patients, desired locations were the palliative care unit (77%), home palliative care (14%), and the hospital (9%). Age and recurrence-free survival (RFS) were factors influencing patients' decision-making processes (P = .030 and .044, respectively). Of the 35 patients, 25 (71%) were able to receive end-of-life care at their desired locations.
CONCLUSIONS: Young patients and those with short RFS struggled with making decisions regarding where to receive end-of-life care. Such patients might benefit from prompt introduction of advanced care planning.
We examined people’s preferences for place of death and identified factors associated with a home death preference. We asked a representative sample (N = 400) of older people (= 60 years) residents in the city of Belo Horizonte, about their preferences for place of death in a situation of serious illness with less than a year to live. Data were analyzed using binomial regression to identify associated factors. 52.2% indicate home as the preferred place of death. Five variables were associated with preference for death at home: those living with 1 child (odds ratio (OR)0.41; 95% confidence interval (CI):0.18-0.92; ref: without children); being in education for up to 4 years (OR0.42; 95% CI:0.20-0.89; ref: higher education); finding it difficult to live with the present income (OR3.18; 95% CI:1.53-6.62; ref: living comfortably); self-assessed fair overall health (OR2.07; 95% CI:1.06-4.03; ref: very good health) and selecting “choosing who makes decisions about your care” as the care priority that would matter to them the most (OR2.43; 95%CI:1.34-4.40; ref: dying in the place you want). Most respondents chose home as preferred place of death. However, most residents of Belo Horizonte die in hospitals, suggesting that preferences are not being considered.
BACKGROUND: To make end-of-life (EOL) decisions is a complex and challenging task for intensive care physicians and a substantial variability in this process has been previously reported. However, a deeper understanding of intensivists' experiences and attitudes regarding the decision-making process is still, to a large extent, lacking. The primary aim of this study was to address Swedish intensivists' experiences, beliefs and attitudes regarding decision-making pertaining to EOL decisions. Second, we aimed to identify underlying factors that may contribute to variability in the decision-making process.
METHOD: This is a descriptive, qualitative study. Semi-structured interviews with nineteen intensivists from five different Swedish hospitals, with different ICU levels, were performed from February 1st to May 31st 2017.
RESULTS: Intensivists strive to make end-of-life decisions that are well grounded, based on sufficient information. Consensus with the patient, family, and other physicians is important. Concurrently, decisions that are made with scarce information or uncertain medical prognosis, decisions made during on-call hours and without support from senior consultants cause concern for many intensivists. Underlying factors that contribute to the variability in decision making are lack of continuity among senior intensivists, lack of needed support during on-call hours and disagreements with physicians from other specialties. There is also an individual variability primarily depending on the intensivist's personality.
CONCLUSION: Swedish intensivists' wish to make end-of-life decisions based on sufficient information, medically certain prognosis and consensus with the patient, family, staff and other physicians. Swedish intensivists' experience a variability in end-of-life decisions, which is generally accepted and not questioned.
The advance directive (AD) is an important resource in oncology and all areas of medicine directly involved in the care of palliative patients. It provides people with the right to have their living wills honoured when they cannot respond by themselves. Despite their importance, ADs are still underused in most countries due to multiple factors. The objective of this review is to better categorise the barriers and difficulties that could impair the composition and implementation of ADs, allowing direct efforts against these obstacles. After the literature review, we believe that there would be five steps in the trajectory of an AD (discussion, composition, registration, access and implementation) and that all those steps can be affected by factors involving the health systems and professionals, the patient themselves and relatives or caregivers.
The Do-Not-Resuscitate (DNR) directive has provided a major leap in end-of-life care. To demonstrate the factors influencing physicians' DNR decisions in King Fahd University Hospital in the Eastern Province of Saudi Arabia, 42 physicians from the medical and surgical departments of the same center were requested to participate in a cross-sectional survey. Thirty-six questionnaires were completed and returned from a total of 42 distributed among physicians, making a response rate of 85.7%. Certain diagnostic categories increase the likelihood of issuing a DNR order for a patient. Neurological (58.3%) and cardiovascular (41.7%) diseases were the highest response among other diseases in influencing physicians' decisions. In addition, other factors like lack of comorbidities (55.5%), age (52.7%), and previous intensive care unit (ICU) admissions and resuscitation (44.4%) showed an effect on the directive decisions of DNR among investigated physicians. However, weak palliative care in the hospital (11.1%), religious beliefs (5.5%), and gender (2.7%) were the least associated factors affecting physicians' DNR decisions. This study addresses the influencing factors of DNR orders issuance among King Fahd Hospital of the University physicians. Physicians noted that cultural standards and religious beliefs do play a role in their decision-making but had less of an effect as compared to other clinical data such as comorbidities, age, and previous ICU admissions.
International clinical practice guidelines recommend that patients with chronic heart failure receive timely and high-quality palliative care. However, integrating palliative care is highly variable and dependent on decision-making and care models. This meta-synthesis aimed to examine health care professionals' decision-making processes and explore factors impacting decisions to refer or deliver palliative care in chronic heart failure. The electronic databases SCOPUS, CINAHL, and Medline were searched. Included studies were those that reported health care professionals' perceptions of palliative care in chronic heart failure through qualitative data collection, were written in English, and were peer-reviewed articles. Included articles were analysed using Thomas and Harden's approach. The dual-process theory was used and applied a priori to organise the findings. The perception of palliative care as a transition and active treatment failure fit within the intuitive system of thinking in the dual-process theory. The theme that overlapped into both intuitive and analytical systems of thinking was acquiring patient and illness information themes reflecting the analytical system of thinking were professional role and experience, pre-existing decision pathways, and balancing viewpoints. This meta-synthesis identified factors influencing the decision-making process in referring patients with chronic heart failure to palliative care. The findings from this review highlight the need for further development of decision-making tools or facilitate guidelines to assist health care professionals' shared decision-making to improve patient outcomes.
CONTEXT: Advances in medicine have seen changes in mortality in Western countries. Simultaneously, countries such as Australia, Canada, USA, New Zealand, the United Kingdom and Germany have encouraged consumer-directed care and Advance Care Plan (ACP) completion, giving patients a voice despite incapacity. Adhering to ACPs relies on the decision-making of treating doctors, making hospital doctors key partners, and their perspectives on ACP adherence critical.
OBJECTIVES: The aim of this review was to explore and map existing research on factors associated with hospital doctors adhering to adult patients' ACPs.
METHODS: A scoping review of English language publications within CINAHL, Emcare, Medline, PsycInfo and Scopus was conducted, following PRISMA Extension for Scoping Reviews (PRISMA-ScR) guidelines. ACPs were defined as adult patient-generated, written health care directions or values statements. Studies of any design, which reported original research associated with hospital doctors adhering to ACPs were included.
RESULTS: Twenty-seven publications were included in the final analysis. Results suggested ACPs were thought potentially useful, however, adherence has been associated with doctors': attributes (e.g. specialty, seniority), attitudes towards ACP (e.g. applicability), and legal knowledge.
CONCLUSION: Current literature suggests doctors' hold largely positive attitudes towards ACPs that provide useful patient information that enables doctors to make appropriate treatment decisions. Doctors often perceive limitations to ACP applicability due to legal requirements or ambiguity of patient outcome goals.
OBJECTIVE: Delirium is a common complication in palliative care patients, especially in the terminal phase of the illness. To date, evidence regarding risk factors and prognostic outcomes of delirium in this vulnerable population remains sparse.
METHOD: In this prospective observational cohort study at a tertiary care center, 410 palliative care patients were included. Simple and multiple logistic regression models were used to identify associations between predisposing and precipitating factors and delirium in palliative care patients.
RESULTS: The prevalence of delirium in this palliative care cohort was 55.9% and reached 93% in the terminally ill. Delirium was associated with prolonged hospitalization (p < 0.001), increased care requirements (p < 0.001) and health care costs (p < 0.001), requirement for institutionalization (OR 0.11; CI 0.069-0.171; p < 0.001), and increased mortality (OR 18.29; CI 8.918-37.530; p < 0.001). Predisposing factors for delirium were male gender (OR 2.19; CI 1.251-3.841; p < 0.01), frailty (OR 15.28; CI 5.885-39.665; p < 0.001), hearing (OR 3.52; CI 1.721-7.210; p < 0.001), visual impairment (OR 3.15; CI 1.765-5.607; p < 0.001), and neoplastic brain disease (OR 3.63; CI 1.033-12.771; p < 0.05). Precipitating factors for delirium were acute renal failure (OR 6.79; CI 1.062-43.405; p < 0.05) and pressure sores (OR 3.66; CI 1.102-12.149; p < 0.05).
SIGNIFICANCE OF RESULTS: Our study identified several predisposing and precipitating risk factors for delirium in palliative care patients, some of which can be targeted early and modified to reduce symptom burden.
BACKGROUND: Various factors affect the mortality of older adult residents of long-term care facilities. To provide adequate nursing care for older adults, it is necessary to understand the factors that affect their risk of mortality.
PURPOSE: This study was designed to (a) evaluate the 24-month survival rate and (b) identify the underlying cause of death in various dimensions, including cognitive, psychological, and physical function; nutritional status; and chronic disease.
METHODS: A longitudinal study was carried out between 2011 and 2013 at seven long-term care facilities. The participants comprised 276 residents who were all older than 65 years old. Baseline measurements included cognitive function (Mini-Mental State Examination for Dementia Screening), psychological function (Cornell Scale for Depression in Dementia), physical function (Barthel Index), nutritional status (Mini Nutritional Assessment, mid-arm circumference, and calf circumference), and chronic disease status (hypertension, diabetes mellitus, chronic respiratory disease, heart disease, and urinary incontinence). Data analysis included univariate and multivariate logistic regression to identify the main factors affecting mortality.
RESULTS: In 2011 (baseline), the mean age of the participants was 80.46 years (SD = 7.08) and most were female (73.6%). At the 24-month follow-up, 94 (34.1%) of the participants had died. The major factors affecting mortality were as follows: cognitive dysfunction (OR = 3.12, 95% CI [1.41, 6.90]), mid-arm circumference (< 22.5 cm; OR = 2.32, 95% CI [1.35, 3.96]), and urinary incontinence (OR = 2.04, 95% CI [1.16, 3.61]).
CONCLUSIONS: According to the findings, special attention is needed at the end of life to improve the quality of life of older adults with cognitive dysfunction, malnutrition (low mid-arm circumference), and urinary incontinence who reside in long-term care facilities.
A majority of nurses struggled with a negative emotion of anger, doubt, fear, or anxious, uncomfortable in the face of death and dying. However, little was known about community health care providers’ in China. Therefore, we conducted a study to investigate their knowledge and attitudes toward end-of-life care and analyze its influencing factors. To provide reference for developing effective strategies to promote end-of-life care in China.
total of 132 community health care providers of 10 community health care centers in Changzhi city were investigated by a Questionnaire of Knowledge and Attitudes toward Caring for the Dying from May, 2017 to December, 2017, and data was analyzed by SPSS 22.0 software.
Of the 132 community health care providers who were under investigation, 70 knew about hospice care, but they rated their overall content on end-of-life care as inadequacy, especially in communication skills and knowledge of pain management. The average score of attitudes was 3.47 (SD = 0.44), the lowest score was in the subscale of nurse-patient communication, which was 2.91 (SD = 0.65). Health care providers who had worked for more than 11 years, who had experiences of the death of relatives or friends, and who had previous experiences of caring for terminal patients had more positive attitudes toward caring for the dying (P < .05 for all). There was a significant relationship between community health care providers’ attitudes toward death and their attitudes toward end-of-life care (r = -0.282, P < .01). The significant predictors of attitudes toward end-of-life care were attitudes toward death (ß = -0.342), experiences of the death of relatives (ß=-0.207), experiences of caring for the dying (ß = 0.185), and working experience (ß = 0.171).
Community health care providers had positive attitudes toward end-of-life care, but they lacked systematic and professional knowledge and skills of caring for the terminal patients. Education is the top priority. It is imperative to set up palliative care courses and life-death education courses, establish an indigenous end-of-life care model, and improve policies, systems, and laws to promote end-of-life care.
Courts in England and Wales, Australia, and New Zealand have insisted the question of when it is acceptable to withdraw or withhold life-sustaining medical treatment from a child must be considered on a case-by-case basis. Over the last 40 years a number of cases have considered whether treatment is objectively in the child's best interests. This article seeks to identify whether there are factors identified and weighed in a consistent manner across cases. Thirty cases involving decisions about the provision of life-sustaining medical treatment to children three years old or younger were identified. Judges regularly refer to the need to weigh benefits and burdens and these factors were identified and assigned scores. Eight key factors were identified, and a scoring range was assigned to each. The factors focus on the condition and position of the child and the burdens of invasive medical treatment. The review demonstrates there are factors consistently identified and despite criticisms of the indeterminacy of the best interests test, there may be a broadly consistent approach to decision-making. Cognitive capacity and unavoidably imminent death appear to be the two most influential factors in determining whether life-sustaining treatment should be provided.
Background: Crises that occur in home hospice care affect family caregivers’ satisfaction with care and increase risk of disenrollment. Because hospice care focuses on achieving a peaceful death, understanding the prevalence and nature of crises that occur in this setting could help to improve end-of-life outcomes.
Objective: To ascertain the prevalence and nature of, as well as factors associated with crises in the home hospice setting as reported by family caregivers.
Design: A multiple-method approach was used. Content analysis was employed to evaluate semistructured interview responses collected from caregivers. Potential associations between crisis occurrence and caregiver and patient factors were examined.
Setting/Subjects: Family caregivers whose care recipients were discharged (dead or alive) from a nonprofit hospice organization.
Measurements: Participants were asked to identify any crisis—defined as a time of intense distress due to a physical, psychological, and/or spiritual cause—they or the patient experienced, while receiving home hospice care.
Results: Of the 183 participants, 76 (42%) experienced a perceived crisis, while receiving hospice care. Three types of crises emerged: patient signs and symptoms (n = 51, 67%), patient and/or caregiver emotional distress (n = 22, 29%), and caregiver burden (n = 10, 13%). Women were more likely than men (46% vs. 26%, p = 0.03) to report a crisis.
Conclusions: A large minority of caregivers report perceiving a crisis while their loved one was receiving home hospice care. Physical (symptoms), psychological (emotional distress) function, and caregiver burden constituted the crises reported. Further studies are needed to better understand and address these gaps in care.