Women are largely responsible for providing care to terminally ill family members at home. The goal of this review is to conceptualize diverse women's experiences in palliative home care from feminist, multicultural, and social justice perspectives.

Peer-reviewed manuscripts were identified using the following databases: CIMAHL, psycINFO, and pubMED. The following search terms were used: women/mothers/daughters, Caregiving, family caregivers, feminism, culture, multiculturalism, and palliative home care. Article reference lists were also reviewed. The majority of penitent articles which formed the basis for the arguments presented were drawn from nursing, medicine, and counseling psychology scholarship.

The application of feminist, multicultural, and social justice theory brings to attention several potential issues female caregivers may experience. First, there exist diverse ways in which women's Caregiving is manifested that tend to correspond with variations in culture, relationship, and age. Second, it is important to attend to changing expectations placed on women as a result of Caregiving at the end of life. Third, the changing power dynamics women may experience in end of life Caregiving are very complex.

The principle finding of the review was the highlighting of potential risks that culturally diverse female caregivers are likely to face at the end of life. The application of social justice theory provides a number of implications for practice and policy. Specifically, the identifying significant concerns regarding female caregivers in palliative home care, as well as suggesting ways to appropriately attend to these concerns, and oppression of women is less likely to be perpetuated, specific areas for future research in this domain are identified.

Hospital palliative care has been shown to improve quality of life and optimize hospital utilization for seriously ill patients who need intensive care. The present review examined whether hospital palliative care in intensive care (ICU) and non-ICU settings will influence hospital length of stay and in-hospital mortality.

A systematic search of CINAHL/EBSCO, the Cochrane Library, Google Scholar, MEDLINE/Ovid, PubMed, and the Web of Science through 12 October 2016 identified 16 studies that examined the effects of hospital palliative care and reported on hospital length of stay and in-hospital death. Random-effects pooled odds ratios and mean differences with corresponding 95% confidence intervals were estimated. Heterogeneity was measured by the I2 test. The Grading of Recommendations Assessment, Development, and Evaluation (GRADE) system was utilized to assess the overall quality of the evidence.

Of the reviewed 932 articles found in our search, we reviewed the full text of 76 eligible articles and excluded 60 of those, which resulted in a final total of 16 studies for analysis. Five studies were duplicated with regard to outcomes. A total of 18,330 and 9,452 patients were analyzed for hospital length of stay and in-hospital mortality from 11 and 10 studies, respectively. Hospital palliative care increased mean hospital length of stay by 0.19 days (pooled mean difference = 0.19; 95% confidence interval [CI95%] = –2.22–2.61 days; p = 0.87; I2 = 95.88%) and reduced in-hospital mortality by 34% (pooled odds ratio = 0.66; CI95% = 0.52–0.84; p < 0.01; I2 = 48.82%). The overall quality of evidence for both hospital length of stay and in-hospital mortality was rated as very low and low, respectively.

Hospital palliative care was associated with a 34% reduction of in-hospital mortality but had no correlation with hospital length of stay.

Most patients diagnosed with lung cancer present with advanced stage disease and have a poor chance of long-term survival. Despite the advantages of hospice care for lung cancer patients, many are enrolled late in the course of their illness or not at all. We sought to identify reasons for this pattern.

A list of perceived barriers to hospice enrollment was generated and used to create two self-administered surveys, one for physicians and one for caregivers. After focus group testing, the finalized instruments were mailed to physicians in South Carolina and to caregivers of lung cancer patients who died under hospice care with a local hospice between 2000 and 2004.

Fifty-three caregivers and 273 physicians responded to the survey. From the caregivers' perspectives, leading reasons for deferred hospice enrollment included patients' unanticipated rapid transition from well to sick and a belief that hospice means giving up hope. From the physicians' perspectives, impediments to earlier hospice enrollment included patients and caregivers overestimating survival from lung cancer and an (incorrect) assumption that patients need to be “DNR/DNI” prior to hospice enrollment.

Lung cancer patients may benefit from earlier introduction to the concepts of hospice care and more education regarding prognosis so that an easier transition in goals of care could be achieved. A smaller proportion of lung cancer patients may benefit from earlier hospice enrollment.

The purpose of this article is to identify how inclusive and accessible palliative care can be achieved for all, including those labelled as vulnerable populations.

Drawing on a review of existing literature as well the research of the Vulnerable Persons and End-of-Life New Emerging Team (VP-NET), this article reflects on what changes can be made within palliative care to make it more inclusive.

Experiences of marginalization often result, intentionally or unintentionally, in differential treatment in healthcare. This increased vulnerability may result from attitudes of healthcare providers or from barriers as a result of “normal” care practices and policies that may exclude or stigmatize certain populations. This may include identifying when palliative care is necessary, who receives palliative care and where, and what is necessary to complement palliative care.

Inclusive and accessible palliative care can become possible through building on the existing strengths in palliative care, as well as addressing existing barriers. This may include treating the whole person and that person's support team, including paid support workers, as part of the unit of care. It involves ensuring physically accessible hospice and palliative care locations, as well as thinking creatively about how to include those excluded in traditional locations. Inclusive palliative care also ensures coordination with other care services. Addressing the barriers to access, and inclusion of those who have been excluded within existing palliative care services, will ensure better palliative and end-of-life care for everyone.

The aims of this study were to describe hope in a sample of hospitalized oncology patients in pain and to determine if various demographic, clinical, and pain characteristics were related to hope. In addition, the individual item and total Herth Hope Index (HHI) scores for these oncology inpatients with pain were compared with those from the general Norwegian population.

Oncology inpatients in pain (n = 225) were recruited from the Norwegian Radium Hospital. The research instruments included the HHI, the Brief Pain Inventory (BPI), and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Data were analyzed using descriptive statistics, Pearson's correlations, and one-sample t tests.

Total HHI scores in oncology inpatients with pain were comparable to a similar sample in Taiwan. The Norwegian oncology inpatients reported significantly higher total HHI scores than the general Norwegian population. The largest difference was on the item “I feel scared about my future.” No relationships were found between total HHI scores and any of the pain intensity scores. Significant relationships were found between total HHI scores and the more psychosocial interference items on BPI and sleep.

The higher levels of hope in the oncology inpatients with pain compared with the general Norwegian population may reflect a “response shift” in the patients' evaluation of hope. Although the difference is relatively small, it may represent a clinically meaningful difference. The fact that significant relationships were found between HHI scores and the more psychosocial interference scores on BPI suggest that hope may be more related to psychosocial effects on pain than on its physical effects.

Studies have shown that when religious and spiritual concerns are addressed by the medical team, patients are more satisfied with their care and have lower healthcare costs. However, little is known about how intensive care unit (ICU) clinicians address these concerns. The objective of this study was to determine how ICU clinicians address the religious and spiritual needs of patients and families.

We performed a cross-sectional survey study of ICU physicians, nurses, and advance practice providers (APPs) to understand their attitudes and beliefs about addressing the religious and spiritual needs of ICU patients and families. Each question was designed on a 4- to 5-point Likert scale. A total of 219 surveys were collected over a 4-month period.

A majority of clinicians agreed that it is their responsibility to address the religious/spiritual needs of patients. A total of 79% of attendings, 74% of fellows, 89% of nurses, and 83% of APPs agreed with this statement. ICU clinicians also feel comfortable talking to patients about their religious/spiritual concerns. In practice, few clinicians frequently address religious/spiritual concerns. Only 14% of attendings, 3% of fellows, 26% of nurses, and 17% of APPs say they frequently ask patients about their religious/spiritual needs.

This study shows that ICU clinicians see it as their role to address the religious and spiritual needs of their patients, and report feeling comfortable talking about these issues. Despite this, a minority of clinicians regularly address religious and spiritual needs in clinical practice. This highlights a potential deficit in comprehensive critical care as outlined by many national guidelines.

Despite their key role in caring for individuals with serious, chronic illness, there have been no national studies examining family caregiver awareness and perceptions of palliative care. Hence, our objectives were to ascertain level of knowledge of palliative care among U.S. family caregivers and describe demographic variation in awareness and perceptions of palliative care.

Using the 2018 National Cancer Institute Health Information National Trends Survey, we identified unpaid family caregivers caring or making healthcare decisions for someone with a medical, behavioral, disability, or other condition. Respondents were asked about their awareness of the term “palliative care” and, if aware, how much they agreed with statements representing common (mis)perceptions about palliative care (e.g., “Palliative care is the same as hospice”).

More than one-half of caregivers (55%) had “never heard” of palliative care; 19.2% knew what palliative care was and “could explain it to someone else.” In adjusted models, racial minorities (vs. whites) and those without a college degree were less likely to have heard of palliative care. Among those aware of palliative care, ~40% “strongly” or “somewhat” agreed that “Palliative care is the same as hospice”; another 10.5% “didn't know.” Similarly, 40% reported that “When I think of palliative care, I automatically think of death.”

One-half of family caregivers of adults with serious chronic illness have never heard of palliative care. Even among those who had heard of palliative care, the majority do not distinguish it from hospice care and death. Given the role family caregivers may play in decisions to access palliative care, public messaging efforts are needed to clarify palliative care services in a way that is patient- and family-centered.

Widowed fathers and their children are at heightened risk for poor coping and maladaptive psychosocial outcomes. This exploratory study is the first to explicitly examine the psychological characteristics of this population of fathers.

Some 259 fathers (mean age = 46.81; 90% Caucasian) with dependent-age children and whose wives had died from cancer within the previous five years completed a web-based survey that consisted of demographic questions, the Center for Epidemiologic Studies Depression Scale (CES–D), the Texas Inventory of Grief–Revised (TRIG–R), the Psychological Adaptation Scale (PAS), the Kansas Parental Satisfaction Scale (KPSS), and items assessing perceived parental efficacy.

Fathers were found to have elevated depressive (CES–D mean = 22.6) and grief (TRIG–R mean = 70.3) symptomatology, low adaptation (PAS mean = 3.2), and high levels of stress related to their parenting role. They reported being satisfied with their parenting (KPSS mean = 15.8) and having met their own parental expectations. Multivariate analyses revealed an association between father's age and depression (p = <0.01), with younger fathers reporting greater depressive symptoms. Psychological adaptation was positively correlated with being in a romantic relationship (p = 0.02) and age of oldest child (p = 0.02).

The results of our exploratory study suggest that, while widowed fathers perceive themselves as meeting their parental responsibilities, it comes at a substantial psychological cost, with particularly high stress related to being a sole parent. These findings may help guide interventions for this neglected population and underscore the importance of developing targeted therapies and research protocols to address their needs.

Our intention was to describe and compare the perspectives of national hospice thought leaders, hospice nurses, and former family caregivers on factors that promote or threaten family caregiver perceptions of support.

Nationally recognized hospice thought leaders (n = 11), hospice nurses (n = 13), and former family caregivers (n = 14) participated. Interviews and focus groups were audiotaped and transcribed. Data were coded inductively, and codes were hierarchically grouped by topic. Emergent categories were summarized descriptively and compared across groups.

Four categories linked responses from the three participant groups (95%, 366/384 codes): (1) essentials of skilled communication (30.6%), (2) importance of building authentic relationships (28%), (3) value of expert teaching (22.4%), and (4) critical role of teamwork (18.3%). The thought leaders emphasized communication (44.6%), caregivers stressed expert teaching (51%), and nurses highlighted teamwork (35.8%). Nurses discussed teamwork significantly more than caregivers (z = 2.2786), thought leaders discussed communication more than caregivers (z = 2.8551), and caregivers discussed expert teaching more than thought leaders (z = 2.1693) and nurses (z = 2.4718; all values of p < 0.05).

Our findings suggest differences in priorities for caregiver support across family caregivers, hospice nurses, and thought leaders. Hospice teams may benefit from further education and training to help cross the schism of family-centered hospice care as a clinical ideal to one where hospice team members can fully support and empower family caregivers as a hospice team member.

Beginning in 2007, all newly diagnosed cancer patients at the Koo Foundation Sun Yat-Sen Cancer Center (KF–SYSCC) were screened for psychosocial distress. Our social workers, as part of the psychosocial care team (PCT), have engaged in proactive outreach with patients identified as distressed. The goal of the present study was to assess the prevalence of psychosocial distress and the extent of contact between the PCT and distressed patients.

Newly diagnosed patients who were treated at KF–SYSCC between 2007 and 2010 for cancer were eligible if there were at least 100 patients with the same type of cancer. Before treatment began, they were screened with the Pain Scale and the Distress Thermometer (DT) and had the option to specify a desire for help. The rates of distress were analyzed by cancer type and by probable related factors. Information regarding contact with the PCT was retrieved from computerized databases.

Overall, some 5,335 cancer patients representing 12 major cancer types were included in our study. Of these, 1,771 (33.20%) were significantly distressed. By multivariate logistic regression, younger age, female gender, higher pain score, and disease stage, but not cancer type, were found to be associated with higher rates of distress. Among these distressed patients, 628 (36%) had some contact with the PCT.

This Taiwanese study with a large sample size revealed a prevalence rate of psychosocial distress similar to rates found in Western countries. Contact with the PCT was established in only 36% of significantly distressed patients, despite a proactive outreach program. It is very important to have screening results made available in a timely fashion to the psycho-oncology team so that appropriate care can be offered promptly.

Thiamine-related encephalopathy (Wernicke's encephalopathy) is a neuropsychiatric syndrome caused by a vitamin B1 (thiamine) deficiency often associated with alcoholism. Cancer predisposes patients to thiamine deficiency unrelated to alcoholism, though many cases are missed clinically. The present report adds to the literature on thiamine as a palliative tool for thiamine-related encephalopathy (TRE) in cancer.

From a larger series of TRE in cancer, we report on three cases with terminal illness.

Case 1. A 61-year old woman with Hodgkin's lymphoma developed TRE over 13 days. Precipitants included a hypermetabolic state in the background of subacute thiamine deficiency. Diagnosis was supported by abnormal serum thiamine and positive MRI findings. Mental status improved within 36 hours of initiating thiamine 500 mg IV t.i.d. Case 2. A 68-year-old man with colon cancer metastatic to liver and bone developed TRE precipitated by C. difficile–related diarrhea superimposed on 3 months of low appetite and weight loss. Diagnosis was supported by abnormal serum thiamine, and thiamine 500 mg IV t.i.d. was initiated. Improvements in mental status began within 36 hours. Case 3. An 80-year-old man with squamous cell carcinoma developed TRE precipitated by systemic infection in the context of three weeks of dysphagia. Antibiotic treatment did not reverse his cognitive symptoms, and a diagnosis of TRE was made based on operationalized criteria. Thiamine 100 mg IV daily did not reverse his symptoms. On his 30th day of admission, thiamine was increased to 500 mg IV t.i.d., resulting in a rapid reversal of altered mental status.

This report adds to the list of cancer types in which TRE/Wernicke's encephalopathy has been reported. It supports the use of higher doses of thiamine than are typically recommended in North America. Improvement following treatment allowed patients to engage with family and treatment teams prior to death.

In the clinical setting of cancer, meaning may well have a central role in the life changes the illness experience brings about. As health care professionals working with people with life-threatening illness, we are exposed to one of the major turning points in life and the ways people confront this transition. Meaning can assist coping by offering a framework, perspective, and counterbalance to the challenge of illness. However, the absence of meaning can be a precursor to profound despair.

This article brings together the clinical implications of two studies conducted by the authors that explored the role of meaning in adjustment to cancer, presenting a theoretical understanding of the experience of meaning in cancer and identifying some potential approaches to intervention.

Our findings point to some specific goals of care as well as a number of therapeutic modalities aimed to meet these goals. We examine four goals of care—acknowledging suffering, encouraging a search for meaning, strengthening connection with others, and ensuring optimal physical care—as foundational in any clinical approach and then examine the key models of therapy that assist the clinician in pursuing these goals.

Our aim is to create an integrated approach to care provision that locates meaning centrally in any patient's adaptation.

Multiple sclerosis (MS) patients' caregivers are sometimes considered as “hidden patients.” How much more this might be true for caregivers of severely affected MS patients has so far been scarcely studied. Palliative care also addressing relatives' needs might therefore be very relevant for these caregivers. However, we do not yet know which unmet needs they have and how these could be met. Our aim was to gain an insight into the subjectively unmet needs of caregivers of severely affected MS patients in Germany.

The study employed a qualitative cross-sectional approach for assessing unmet needs. Twelve caregivers of severely affected MS patients were recruited using a convenience sampling approach. Face-to-face interviews were conducted, audiotaped, and transcribed verbatim, followed by qualitative content analysis.

Unmet needs were sorted into the following categories: “relationship to physician,” “individual support by the healthcare system,” “relationship to the individual severely affected by MS,” “end-of-life issues,” “self-care,” and “higher awareness of MS.” Caregivers tended to group the unmet needs of their care recipients with their own and rarely focused on their own wishes and restrictions.

A close patient–caregiver dyad makes it difficult to differentiate unmet caregiver needs. However, the palliative care approach might help caregivers of severely affected MS patients by answering questions on disease progress and end-of-life issues, as well as by offering respite care, support for self-care, and help in preserving one's identity, and also anticipating the time to come after the death.

In Canada, friends and family members are becoming increasingly responsible for providing palliative care in the home. This is resulting in some caregivers experiencing high levels of stress and burden that may ultimately surpass their ability to cope. Recent palliative care research has demonstrated the potential for caregiver resilience within such contexts. This research, however, is primarily focused on exploring individual-level factors that contribute to resilience, minimizing the inherent complexity of this concept, and how it is simultaneously influenced by one's social context. Therefore, our study aims to identify socio-environmental factors that contribute to palliative family caregiver resilience in the Canadian homecare context.

Drawing on ethnographic fieldnotes and semistructured interviews with family caregivers, care recipients, and homecare nurses, this secondary analysis employs an intersectionality lens and qualitative case study approach to identify socio-environmental factors that facilitate family caregivers' capacity for resilience. Following a case study methodology, two cases are purposely selected for analysis.

Findings demonstrate that family caregiver resilience is influenced not only by individual-level factors but also by the social environment, which sets the lived context from which caregiving roles are experienced. Thematic findings of the two case studies revealed six socio-environmental factors that play a role in shaping resilience: access to social networks, education/knowledge/awareness, employment status, housing status, geographic location, and life-course stage.

Findings contribute to existing research on caregiver resilience by empirically demonstrating the role of socio-environmental factors in caregiving experiences. Furthermore, utilizing an intersectional approach, these findings build on existing notions that resilience is a multidimensional and complex process influenced by numerous related variables that intersect to create either positive or negative experiences. The implications of the results for optimizing best homecare nursing practice are discussed.

Most terminally ill cancer patients prefer to die at home, yet only a minority are able to achieve this. Our aim was to investigate the factors associated with cancer patients achieving their preference to die at home.

This study took the form of a mortality followback, population-based, observational survey of the relatives of deceased cancer patients in Northern Ireland. Individuals who registered the death of a friend or relative (aged ≥ 18 years) between 1 December 2011 and 31 May 2012, where the primary cause of death was cancer (ICD10: C00–D48), who were invited to take part. Preferred and actual place of death, and patient, service, and clinical data were collected using the QUALYCARE postal questionnaire. Multivariable logistic regression was employed to investigate the factors associated with achieving a home death when preferred.

Some 467 of 1,493 invited informants completed the survey. The 362 (77.5%) who expressed a preference for dying at home and spent time at home in their final 3 months were included in our analysis. Of these, 53.4% achieved their preference of a home death. Factors positively associated with achieving a home death were: living in an affluent area, receipt of good and satisfactory district nurse care, discussing place of death with health professionals, and the caregiver's preference for a home death. Being older than 80 years of age, being a Presbyterian, and being unconscious most of the time during their final week were negatively associated with achieving a home death.

Communication, care satisfaction, and caregiver preferences were all associated with home death. Our findings will help inform the design of future interventions aimed at increasing the proportion of patients achieving their preferred place of death at home, for example, by targeting interventions toward older patients and those from the most deprived communities.

This study aimed to determine the relationship between quality of life and satisfaction with care among cancer patients in palliative care in Saudi Arabia.

A total of 130 palliative cancer patients were invited to participate in our cross-sectional study. Patients were recruited from a large tertiary hospital within the Ministry of Health in Saudi Arabia. All eligible participants answered a three-part questionnaire that included demographic data and the validated European Organization for Research and Treatment of Cancer (EORTC QLQ–C15–PAL) and (EORTC IN-PATSAT32) questionnaires.

Participants were mostly female (103/130, 79%) and married (93/130, 71%), and more than half had breast cancer (69/130, 53%). They were between 17 and 86 years of age (mean = 46.7, SD = 16.50). The correlation test showed that the relationship with physical function was weak, while emotional function and global health status had a moderate relationship with general satisfaction (r = 0.21, p < 0.01; r = 0.32, p < 0.001; r = 0.26, p < 0.01, respectively). Our results suggest that emotional function is the more important factor in predicting satisfaction with care among palliative cancer patients. An increase in emotional function leads to increased general satisfaction.

The emotional function of palliative cancer patients was more closely associated with overall satisfaction with care than physical function or global health status. All palliative care team members are thus required to provide adequate psychosocial support. It is recommended that interdisciplinary and collaborative approaches be integrated in palliative care of cancer patients.

Demoralization syndrome (DS) within the context of the psychological experience at the end of life is an important and relevant medical issue and remains the subject of a growing area of research.

Ours was a cross-sectional study designed to assess the prevalence and associated demographic, physical, psychiatric, and psychosocial factors for demoralization syndrome in Portuguese patients with advanced disease.

Some 80 terminally ill patients were included in the analyses over a 28-month period of time. The prevalence of DS was found to be 52.5%. No statistical differences were observed among prevalence of DS within categories of all studied variables, with the exception of depression using DSM–IV criteria (prevalence ratio PR = 1.8, CI95% = [1.18–2.74]) and desire for death (PR = 1.8, CI95% = [1.25–2.56]). In the Poisson regression analyses predicting DS, none of the latter factors emerged as significant (DSM–IV criteria: PR = 1.6, CI95% = [0.84–3.08]; and desire for death: PR = 1.5, CI95% = [0.74–2.99]). Thirty percent of participants met both criteria for demoralization syndrome and depression using the DSM–IV.

Prevalence of demoralization syndrome was high in this patient sample. Based on our results, we cannot determine if DS and depression are two distinct psychological entities. Identifying factors associated with DS could help provide efficacious interventions capable of diminishing suffering in terminally ill patients.

The prevalence of depression as well as adjustment and anxiety disorders is high in advanced cancer patients, and research exploring intraindividual factors leading to high psychological distress is underrepresented. Cancer patients' feelings about security and trust in their healthcare providers have a significant influence on how they deal with their disease. The perception of social support is affected by patients' attachment styles and influences their reactions to feelings of dependency and loss of control. We therefore aimed to explore attachment and its association with psychological distress in patients with advanced cancer.

We obtained data from the baseline measurements of a randomized controlled trial in advanced cancer patients. Patients were sampled from the university medical centers of Hamburg and Leipzig, Germany. The main outcome measures included the Patient Health Questionnaire, the Death and Dying Distress Scale, the Memorial Symptom Assessment Scale, and the Experience in Close Relationships Scale for assessing attachment insecurity.

A total of 162 patients were included. We found that 64% of patients were insecurely attached (fearful-avoidant 31%, dismissing 17%, and preoccupied 16%). A dismissing attachment style was associated with more physical symptoms but did not predict psychological distress. A fearful-avoidant attachment style significantly predicted higher death anxiety and depression, whereas preoccupied attachment predicted higher death anxiety only. Overall, insecure attachment contributed to the prediction of depression (10%) and death anxiety (14%).

The concept of attachment plays a relevant role in advanced cancer patients' mental health. Healthcare providers can benefit from knowledge of advanced cancer patients' attachment styles and how they relate to specific mental distress. Developing a better understanding of patients' reactions to feelings of dependency and distressing emotions can help us to develop individually tailored advanced cancer care programs and psychotherapeutic interventions.