Maintaining false hope may result in prolonged curative aggressive treatments until the very last stage of life. In this study, we sought to explore how people think that realistic and hopeful information should best be combined in physician–patient communications at the end of life.

During a period of 15 days, participants of five online focus groups (OFGs) could log in onto a closed discussion site and offer responses to several topics. A variety of people participated: patients, older people, relatives, and healthcare professionals with and without a Muslim background. Participants with a Muslim background constituted a separate group, because previous research indicated that they might have distinct views on good end-of-life care and communication. Transcripts were analyzed following the principles of thematic analysis.

Participants from all focus groups preferred that physicians provide realistic information in an empathic way, stating that the patient would never be left on his own and that withholding curative treatment was not equal to withholding care, explicitly asking how the patient could be helped during the time remaining, and involving other professionals in the care process and communications. As such, physicians could support patients' transition from “hope for a cure” to “hope for a good death.” Muslims specified the way they wished to receive realistic information: first from a relative, and not by using the term “incurable illness,” but rather by informing the patient that they had no remaining curative treatments available.

Realism and hope are not necessarily mutually exclusive and can be combined when providing realistic information in a delicate and culturally sensitive way. This study provides suggestions on how physicians can do so. Communication skills training as well as anchoring knowledge of the diversity of cultural and religious views into physicians' education could improve end-of-life communication.

We aimed to describe the overall quantitative and qualitative results of a “La Caixa” Foundation and World Health Organization Collaborating Center Program entitled “Comprehensive Care for Patients with Advanced Illnesses and their Families” after four years of experience.

Qualitative and quantitative methods were employed to assess the program. Quasiexperimental, prospective, multicenter, single-group, and pretest/posttest methods were utilized to assess the quantitative data. The effectiveness of psychosocial interventions was assessed at baseline (visit 1) and after four follow-up visits. The following dimensions were assessed: mood state, discomfort, anxiety, degree of adjustment or adaptation to disease, and suffering. We also assessed the four dimensions of the spiritual pain scale: faith or spiritual beliefs, valuable faith or spiritual beliefs, meaning in life, and peace of mind/forgiveness. Qualitative analyses were performed via surveys to evaluate stakeholder satisfaction.

We built 29 psychosocial support teams involving 133 professionals—mainly psychologists and social workers. During the study period, 8,964 patients and 11,810 family members attended. Significant improvements were observed in the psychosocial and spiritual dimensions assessed. Patients, family members, and stakeholders all showed high levels of satisfaction.

This model of psychosocial care could serve as an example for other countries that wish to improve psychosocial and spiritual support. Our results confirm that specific psychosocial interventions delivered by well-trained experts can help to ease suffering and discomfort in end-of-life and palliative care patients, particularly those with high levels of pain or emotional distress.

Due to the multiple physical, psychological, existential, and social symptoms involved, patients with advanced cancer often have a reduced quality of life (QoL), which requires specialized palliative care (SPC) interventions. The primary objective of the present systematic review was to review the existing literature about SPC and its effect on QoL, on physical and psychological symptoms, and on survival in adult patients with advanced cancer.

We utilized a search strategy based on the PICO (problem/population, intervention, comparison, and outcome) framework and employed terminology related to cancer, QoL, symptoms, mood, and palliative care. The search was performed in Embase, PubMed, and the Cochrane Central Register of Controlled Trials. Selected studies were analyzed and categorized according to methods, results, quality of evidence, and strength of recommendation.

Six randomized controlled trials (RCTs) were selected for analysis (out of a total of 1,115 studies). Two other studies were found by hand search, one of which was only published in conference abstract form. The RCTs differed in terms of aims, interventions, control groups, and outcomes; however, the primary aim of all of them was to investigate the effect of SPC on patient QoL. Five studies found improved QoL in the intervention group. Physical symptom intensity decreased in two studies, and three studies found improved mood in the intervention group. However, physical and psychological symptoms were secondary outcomes in these studies. Survival was improved in two studies. All the studies offered generalizability, but the level of evidence validity varied among them.

Due to several methodological limitations, the evidence offered in these studies ranged from low to high. The evidence in this field of study in general is still nascent, but there is growing support for the utilization of SPC to improve the quality of life of adult patients with advanced cancer. The evidence that SPC reduces physical and psychological symptoms is moderate, while the evidence that it prolongs survival is low.

The experience of caregiving in the context of motor neurone disease (MND) is extremely challenging. Over the past 15 years, quantitative and qualitative studies have delineated the psychosocial aspects of this experience, exploring its impact on caregivers' quality of life, rates of depression, distress, anxiety, and burden. Our paper aimed to provide an overview of the lived experience of MND caregivers, identifying the variables that can influence MND caregiver functioning that are relevant to the development of an intervention.

A narrative review was conducted, synthesizing the findings of literature retrieved from 2000 to early 2016.

A total of 37 articles were included in the review. The articles varied considerably in terms of methodology and quality. The main influential aspects reported and identified were factors pertaining to the patient, factors intrinsic to the caregiver, relationship factors, and social support factors.

There is evidence to support the fact that caregivers have poorer outcomes when they care for patients with a more severe clinical profile, poorer emotional health or neurobehavioral concerns, or when the caregivers themselves struggle with adaptive problem-solving and coping skills. The availability and use of social support are also likely to be important for caregiver psychosocial outcomes. Further investigation is required to clarify the influence of changes in the relationship with the patient. Significant factors affecting the caregiver experience are considered in relation to their amenability to psychosocial intervention. Recommendations are made regarding the optimal features of future psychosocial intervention research.

International studies have shown that patients want their spiritual needs attended to at the end of life. The present authors developed a project to investigate people's understanding of spirituality and spiritual care practices in New Zealand (NZ) hospices.

A mixed-methods approach included 52 semistructured interviews and a survey of 642 patients, family members, and staff from 25 (78%) of NZ's hospices. We employed a generic qualitative design and analysis to capture the experiences and understandings of participants' spirituality and spiritual care, while a cross-sectional survey yielded population level information.

Our findings suggest that spirituality is broadly understood and considered important for all three of the populations studied. The patient and family populations had high spiritual needs that included a search for (1) meaning, (2) peace of mind, and (3) a degree of certainty in an uncertain world. The healthcare professionals in the hospices surveyed seldom explicitly met the needs of patients and families. Staff had spiritual needs, but organizational support was sometimes lacking in attending to these needs.

As a result of our study, which was the first nationwide study in NZ to examine spirituality in hospice care, Hospice New Zealand has developed a spirituality professional development program. Given that spirituality was found to be important to the majority of our participants, it is hoped that the adoption of such an approach will impact on spiritual care for patients and families in NZ hospices.

People with a life-limiting physical illness experience high rates of significant psychological and psychiatric morbidity. Nevertheless, psychiatrists often report feeling ill-equipped to respond to the psychiatric needs of this population. Our aim was to explore psychiatry trainees’ views and educational needs regarding the care of patients with a life-limiting physical illness.

Using semistructured interviews, participants’ opinions were sought on the role of psychiatrists in the care of patients with a life-limiting illness and their caregivers, the challenges faced within the role, and the educational needs involved in providing care for these patients. Interviews were audiotaped, fully transcribed, and then subjected to thematic analysis.

A total of 17 psychiatry trainees were recruited through two large psychiatry training networks in New South Wales, Australia. There were contrasting views on the role of psychiatry in life-limiting illness. Some reported that a humanistic, supportive approach including elements of psychotherapy was helpful, even in the absence of a recognizable mental disorder. Those who reported a more biological and clinical stance (with a reliance on pharmacotherapy) tended to have a nihilistic view of psychiatric intervention in this setting. Trainees generally felt ill-prepared to talk to dying patients and felt there was an educational “famine” in this area of psychiatry. They expressed a desire for more training and thought that increased mentorship and case-based learning, including input from palliative care clinicians, would be most helpful.

Participants generally feel unprepared to care for patients with a life-limiting physical illness and have contrasting views on the role of psychiatry in this setting. Targeted education is required for psychiatry trainees in order to equip them to care for these patients.

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.

This study examined insomnia in the context of breast cancer, both as an independent symptom and as a component of a symptom cluster that includes depression, anxiety, fatigue, and pain.

Women with a history of breast cancer currently taking an aromatase inhibitor and who had completed cancer treatment at least one month prior to enrollment were included (n = 413). Participants completed validated measures of insomnia, fatigue, pain, depression, and anxiety. Factor analysis was utilized to examine the extent to which these symptoms could be represented by common latent factors. Insomnia severity was then separated into a symptom cluster component (I–SC) and an insomnia-unique (I–U) component. The associations between each insomnia component and demographic and clinical factors were examined in multivariate models.

A single-factor solution provided the best fit to the symptom measures. Some 53.3% of the variance in insomnia severity was captured by this symptom cluster (I–SC), with the remaining 43.7% being unique to insomnia (I–U). Unique patterns of demographic factors (e.g., age and body–mass index), but not clinical factors, were associated with each insomnia measure.

Approximately 50% of insomnia severity was related to the symptom cluster, with the rest being unique to insomnia. Different sociodemographic risk factors were related to the different insomnia measures. Stronger underlying foundations for the mechanisms of each component could lead to refined diagnoses and targeted interventions for addressing the overall insomnia burden in cancer patients.

The objective of this study was to examine the religious/spiritual beliefs of followers of the five major world religions about frequently encountered medical situations at the end of life (EoL).

This was a systematic review of observational studies on the religious aspects of commonly encountered EoL situations. The databases used for retrieving studies were: Ovid MEDLINE In-Process & Other Non-Indexed Citations, Ovid MEDLINE, Ovid EMBASE, Ovid PsycINFO, Ovid Cochrane Central Register of Controlled Trials, Ovid Cochrane Database of Systematic Reviews, and Scopus. Observational studies, including surveys from healthcare providers or the general population, and case studies were included for review. Articles written from a purely theoretical or philosophical perspective were excluded.

Our search strategy generated 968 references, 40 of which were included for review, while 5 studies were added from reference lists. Whenever possible, we organized the results into five categories that would be clinically meaningful for palliative care practices at the EoL: advanced directives, euthanasia and physician-assisted suicide, physical requirements (artificial nutrition, hydration, and pain management), autopsy practices, and other EoL religious considerations. A wide degree of heterogeneity was observed within religions, depending on the country of origin, level of education, and degree of intrinsic religiosity.

Our review describes the religious practices pertaining to major EoL issues and explains the variations in EoL decision making by clinicians and patients based on their religious teachings and beliefs. Prospective studies with validated tools for religiosity should be performed in the future to assess the impact of religion on EoL care.

Caregivers of cancer patients face intense demands throughout the course of the disease, survivorship, and bereavement. Caregiver burden, needs, satisfaction, quality of life, and other significant areas of caregiving are not monitored regularly in the clinic setting, resulting in a need to address the availability and clinical effectiveness of cancer caregiver distress tools. This review aimed to determine the availability of cancer caregiver instruments, the variation of instruments between different domains of distress, and that between adult and pediatric cancer patient populations.

A literature search was conducted using various databases from 1937 to 2013. Original articles on instruments were extracted separately if not included in the original literature search. The instruments were divided into different areas of caregiver distress and into adult versus pediatric populations. Psychometric data were also evaluated.

A total of 5,541 articles were reviewed, and 135 articles (2.4%) were accepted based on our inclusion criteria. Some 59 instruments were identified, which fell into the following categories: burden (n = 26, 44%); satisfaction with healthcare delivery (n = 5, 8.5%); needs (n = 14, 23.7%); quality of life (n = 9, 15.3%); and other issues (n = 5, 8.5%). The median number of items was 29 (4–125): 20/59 instruments (33.9%) had ≤20 items; 13 (22%) had ≤20 items and were psychometrically sound, with 12 of these 13 (92.3%) being self-report questionnaires. There were 44 instruments (74.6%) that measured caregiver distress for adult cancer patients and 15 (25.4%) for caregivers of pediatric patients.

There is a significant number of cancer caregiver instruments that are self-reported, concise, and psychometrically sound, which makes them attractive for further research into their clinical use, outcomes, and effectiveness.

Sleep disturbances are a common issue for those who provide informal care to someone with a life-limiting condition. The negative consequences of poor sleep are well documented. The purpose of the present study was to determine the sleep patterns of caregivers of patients with advanced cancer.

An extensive systematic review of studies reporting empirical sleep data was undertaken in 2015 in accordance with the PRISMA Statement. A total of eight electronic databases were searched, with no date restrictions imposed. Additionally, a search of the bibliographies of the studies identified during the electronic search was conducted. Search terms included: “sleep,” “insomnia,” “sleep disturbance,” “circadian rhythm,” “caregiver,” “carer,” “advanced cancer,” “palliative cancer,” and MESH suggestions. The inclusion criteria required studies to be in English and to report primary qualitative and/or quantitative research that examined sleep in caregivers of patients with advanced cancer. Unpublished studies, conference papers, and dissertations were excluded.

Overall, 10 studies met the inclusion criteria and were included in the review. Two major findings emerged from the data synthesis. First, at least 72% of caregivers reported moderate to severe sleep disturbance as measured by the Pittsburgh Sleep Quality Index. Second, objective measurement of caregivers' sleep identified that some caregivers experienced up to a 44% reduction in their total sleep time compared to the recommended eight hours.

Reduction in total sleep time appears to be the biggest issue facing caregivers' sleep. Future studies need to explore the specific factors that cause these sleep disturbances and thus help to identify interventions to optimize sleep.

This scoping literature review, through finding and assessing researched bereavement service outcomes, sought to determine the state of bereavement services evaluation, to catalogue service types, and to identify which service or services, if any, demonstrate clear evidence of effectiveness.

Our methods included: (1) a literature search for published English-language research articles from 2005–2015; (2) critical appraisal of articles to identify findings; (3) compilation of findings; and (4) determination of the relevance of our findings.

Some 38 papers were found, and all were retained to identify the outcomes researched and research findings. Many different outcomes were studied in the 18 quantitative, 11 qualitative, and 9 mixed-methods investigations undertaken worldwide. Ten studies focused on level of grief, six on stress/distress level, six on grief knowledge, six on level of depression, and five on somatization or physical symptoms. Most commonly, a group of bereavement services was evaluated as a whole, followed by group therapy, individual counseling, written information, and other less common services. No group of services or individual service was determined to yield clear and convincing evidence of effectiveness. Regardless, all but one service were shown to have value—most often related to gaining grief information and/or emotional support. Until high-quality research studies have repeatedly revealed evidence of effectiveness, it is possible that the positive outcomes of bereavement services will be largely based on bereaved people receiving helpful educational information and emotional support from organizations and people prepared to help them.

This project outlines existing bereavement service types and the state of science in relation to determination of outcomes. It offers suggestions to advance the state of science to validate or refine bereavement services. It brings to light the issue that bereavement service outcomes need to be carefully researched so that evidence can drive service refinement and expansion. It also highlights the importance of effective bereavement services.

The purpose of our systematic review was to determine whether the introduction of palliative care (PC) teams reduces length of stay and/or mortality for terminally ill patients (TIPs) in an intensive care unit (ICU).

We hoped to examine studies that compared TIPs in an ICU who received end-of-life care following implementation of a PC team (intervention group) to those who received care where PC teams had not yet been introduced (control group). We searched MEDLINE via PubMed, LILACS, Scopus, Embase, and Cochrane CENTRAL (search conducted in December of 2015) without language restrictions. Our outcome measures were length of stay in an ICU, presented as an average difference with a corresponding 95% confidence interval (CI95%), and mortality in the ICU, presented as a risk ratio with a corresponding CI95%. Two of our authors independently extracted all of the data.

Of the 399 publications identified, 27 were selected for full-text analysis and 19 were excluded, leaving 8 articles for inclusion, which involved a total of 7,846 patients. A metaanalysis of mortality in the ICU was conducted with four studies. Lower mortality was found in the intervention group: risk ratio = 0.78 (CI95% = 0.70–0.87), p < 0.00001, I2 = 18%. Length of stay in the ICU was presented as a mean and standard deviation in four studies, and the result was a reduction of ~2.5 days in the length of stay with application of the intervention: mean = –2.44 days (CI95% = –4.41 to –0.48), p = 0.01, I2 = 86%.

Introduction of palliative care teams can reduce mortality rates in the ICU, and perhaps shorten length of stay in the ICU for terminally ill patients.

The concept of “wisdom” is beginning to emerge in the oncology literature, raising questions concerning: (1) how the concept of wisdom is used in oncology literature; (2) the ways in which wisdom has been a focus of inquiry within oncology care; and (3) how wisdom is characterized when the term is used.

A scoping review, using Arksey and O'Malley's five-step framework, was undertaken to address these questions. In consultation with oncology reference librarians, “wisdom”- and “oncology”-related search terms were identified, and four electronic databases were searched: CINAHL, SocINDEX, PubMed, and PsychINFO. After removal of duplicates and application of inclusion and exclusion criteria, 58 records were identified and included for analysis.

The concept of wisdom was employed with a breadth of meanings, and 58 records were schematized into 7 genres, including: (1) empirical research with wisdom foregrounded as a study focus (n = 2); (2) empirical research articles where “wisdom” appears in the findings (n = 16); (3) a quality-improvement project where wisdom is an embedded concept (n = 1); (4) essays where wisdom is an aspect of the discussion (n = 5); (5) commentary/opinion pieces where wisdom is an aspect of its focus (n = 6); (6) personal stories describing wisdom as something gleaned from lived experience with cancer (n = 2); and (7) everyday/taken-for-granted uses of wisdom (n = 26).

The notion of wisdom has a taken-for-granted presence in the published oncology literature and holds promise for future research into patient and clinician wisdom in oncology care. Nonetheless, the terminology is varied and unclear. A scholarly focus on wisdom has not been brought to bear in cancer care to the degree it has in other fields, and research is in the early stages. Various characterizations of wisdom are present. If such a resource as “wisdom” exists, dwelling in human experiences and practices, there may be benefit in recognizing wisdom as informing the epistemologies of practice in oncology care.