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 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.

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.

Research has found that writing about stress can confer physical and psychological health benefits on participants and that adopting a self-compassionate stance may have additional benefits. This pilot study evaluated a self-compassionate expressive writing intervention in a Day Hospice setting.

Thirteen patients with life-limiting illnesses wrote on two occasions about recent stressful experiences. Half also received a self-compassion instruction for their writing. Outcome measures were taken at baseline and one week after the second writing session, and text analysis was used to identify changes in the types of words used, reflecting changes in psychological processes.

Patients given the self-compassion instruction increased in their self-soothing and self-esteem in contrast to patients in the stress-only condition. Happiness broadly increased in both groups although reported levels of stress generally increased in patients given the self-compassion instruction but decreased in patients in the stress-only condition. Those given the self-compassion instruction also increased in their use of causal reasoning words across the two writing sessions compared with those in the stress-only condition.

Expressive writing appears to be beneficial in patients at a hospice and was viewed as valuable by participants. The inclusion of a self-compassion instruction may have additional benefits and a discussion of the feasibility of implementing expressive writing sessions in a Day Hospice is offered.

Disease management in motor neurone disease (MND) is focused on preserving quality of life. However, the emphasis has so far been on physical symptoms and functioning and not psychosocial wellbeing. MND affects the wellbeing of carers, of family and social network members, and of healthcare providers, as well as of the patients. We therefore aimed to assess and synthesize the knowledge about maximizing MND-related psychosocial wellbeing across all these groups.

We used a systematic search and selection process to assess the scope of the literature along with a narrative synthesis of recent high-quality reviews.

The original studies were mainly observational studies of patients and, to a lesser extent, of carers. There were few interventional studies, mainly of patients. There were very few studies of any type on wellbeing in their wider social network or in healthcare professionals. All the review literature looked at MND patient or carer wellbeing, with some covering both. No reviews were found of wellbeing in other family members, patients' social networks, or their healthcare professionals. The reviews demonstrated wellbeing problems for patients linked to psychosocial issues. Carer wellbeing is also compromised. Psychotherapies, social supports, improved decision supports, and changes to healthcare delivery are among the suggested strategies for improved patient and carer wellbeing, but no proven interventions were identified for either. Early access to palliative care, also not well-tested but recommended, is poorly implemented.

Work on interventions to deal with well-established wellbeing problems for patients and carers is now a research priority. Explicit use of current methods for patient and public involvement and for design and testing of interventions provide a toolkit for this research. Observational research is needed in other groups. There is a potential in considering needs across patients' social networks rather than looking individually at particular groups.

Palliative family caregivers appear to experience the rewards of caregiving concurrent with burdens and negative feelings. Relatively few studies have attended to the positive and rewarding aspects in palliative family caregiving. In addition, most studies on rewards are retrospective and examine the experiences of bereaved family caregivers. The present study aimed at describing feelings of reward among family caregivers during ongoing palliative care. A further aim was to compare the experience of rewards in relation to sex and age.

The sample consisted of 125 family caregivers and took place in three specialist palliative care units and one hematology unit. Participants answered a questionnaire including demographic background questions and the Rewards of Caregiving Scale (RCS). Descriptive statistics were employed to describe characteristics of the participants and the level of rewards. A Mann–Whitney U test was used to compare differences between groups of different sex and age.

Palliative family caregivers reported general high levels of reward. The greatest source of rewards involved feelings of being helpful to patients. This was closely followed by giving something to patients that brought them happiness and being there for them. The smallest sources of rewards were related to personal growth, self-satisfaction, and personal meaning. There was also an association between rewards and age but not between men and women.

Family caregivers experienced the rewards of caregiving during ongoing palliative care despite their unique and stressful situation. Feelings of reward seem to be about handling a situation in a satisfying way, feeling competent and confident to take care of the patient and thereby feeling proud. Support could preferably be designed to improve a family caregiver's ability to care and to facilitate the positive aspects and rewards of caregiving and focus on strengths and resources.

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.

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.

To date, no measure of social support has been developed specifically for either palliative care or oncology settings. The present study examined the psychometric properties of the Duke–University of North Carolina Functional Social Support Questionnaire (DUFSS) in order to (1) assess the adequacy of the scale in the context of severe medical illness and (2) evaluate whether a brief subset of items might generate roughly comparable utility.

The 14-item DUFSS was administered to 1,362 individuals with advanced cancer or AIDS. Classical test theory (CTT) and item response theory (IRT) analyses were utilized to develop an abbreviated version of the DUFSS that maintained adequate reliability and validity and might increase the feasibility of its administration in a palliative care setting. The reliability and concurrent validity of the DUFSS-5 were evaluated in a separate validation sample of patients with advanced cancer.

Analyses generated a five-item version of the DUFSS (the DUFSS-5) that collapsed response levels into only three options, instead of five. Correlations between the DUFSS-5 and measures of depression, quality of life, and desire for hastened death, as well as regression models testing the main-effect and buffering models of social support, provided support for the utility of the DUFSS-5.

Both the DUFSS and the abbreviated DUFSS-5 appear to have adequate reliability and validity in this setting. Moreover, the DUFSS-5 represents a potentially important option for healthcare researchers, particularly for those working in palliative care settings where issues of patient burden are paramount. Such analyses are critical for advancing the development and refinement of psychosocial measures, but have often been neglected.

Palliative care plays an essential role in enhancing the quality of life and quality of death for residents in long-term care homes (LTCHs). Access to palliative care specialists is one barrier to providing palliative care to LTCHs. This project focused on palliative telemedicine, specifically evaluating whether integration of early palliative care specialist consultation into an LTCH would be feasible through the implementation of videoconferencing during routine interdisciplinary care conferences.

This was a mixed-methods evaluation of a pilot program implementation over 6 months, to integrate early palliative care into an LTCH. There were two pilot communities with a total of 61 residents. Resident demographics were collected by a chart review, and palliative telemedicine feasibility was evaluated using staff and family member surveys.

For the 61 residents, the average age of the residents was 87 years, with 61% being female and 69% having dementia as the primary diagnosis. The mean CHESS (Change in Health, End-Stage Disease, Signs, and Symptoms) and ADL (Activities of Daily Living) scores were 0.8 and 4.0, respectively, with 54% having a Palliative Performance Scale score of 40. Seventeen clinical staff surveys on palliative teleconferences were completed with the majority rating their experience as high. Ten out of the 20 family members completed the palliative teleconference surveys, and the majority were generally satisfied with the experience and were willing to use it again. Clinical staff confidence in delivering palliative care through telemedicine significantly increased (P = 0.0021).

The results support the feasibility of videoconferencing as a means of palliative care provision. Despite technical issues, most clinical staff and families were satisfied with the videoconference and were willing to use it again. Early integration of palliative care specialist services into an LTCH through videoconferencing also led to improved self-rated confidence in the palliative approach to care by clinical staff.

When caring for a loved one with a life-limiting illness, a caregiver's own physical, emotional, and spiritual suffering can be profound. While many interventions focus on physical and emotional well-being, few caregiver interventions address existential and spiritual needs and the meaning that caregivers ascribe to their role. To evaluate the feasibility and acceptability of the process and content of Caregiver Outlook, we employed a manualized chaplain-led intervention to improve well-being by exploring role-related meaning among caregivers of patients with a life-limiting illness.

We conducted a single-arm pre–post pilot evaluation among caregivers of patients with advanced cancer or amyotrophic lateral sclerosis (ALS). Caregivers completed three chaplain-led intervention sessions focusing on (1) a relationship review, (2) forgiveness, and (3) legacy. Outcomes administered at baseline and at 1 and 2 weeks after the intervention included quality of life, anxiety, depression, spiritual well-being, religious coping, caregiver burden, and grief.

The sample (N = 31) included a range of socioeconomic status groups, and the average age was approximately 60 years. A third of them worked full-time. Some 74% of our participants cared for a spouse or partner, and the other quarter of the sample cared for a parent (13%), child (10%), or other close family member (3%). At baseline, participants did not demonstrate clinical threshold levels of anxiety, depression, or other indicators of distress. Outcomes were stable over time. The qualitative results showed the ways in which Caregiver Outlook was assistive: stepping back from day-to-day tasks, the opportunity to process emotions, reflecting on support received, provoking thoughts and emotions between sessions, discussing role changes, stimulating communication with others, and the anonymity of a phone conversation. Both religious and nonreligious participants were pleased with administration of the chaplain intervention.

The acceptability and feasibility of Caregiver Outlook were demonstrated among caregivers of patients with an advanced illness. Our pilot findings suggest minor modifications to study participant screening, interventionist guidance, and the study measures.

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.

Advanced care plans (ACPs) are designed to convey the wishes of patients with regards to their care in the event of incapacity. There are a number of prerequisites for creation of an effective ACP. First, the patient must be aware of their condition, their prognosis, the likely trajectory of the illness, and the potential treatment options available to them. Second, patient input into ACP must be free of any coercive factors. Third, the patient must be able to remain involved in adapting their ACP as their condition evolves. Continued use of familial determination and collusion within the local healthcare system, however, has raised concerns that the basic requirements for effective ACP cannot be met.

To assess the credibility of these concerns, we employed a video vignette approach depicting a family of three adult children discussing whether or not to reveal a cancer diagnosis to their mother. Semistructured interviews with 72 oncology patients and 60 of their caregivers were conducted afterwards to explore the views of the participants on the different positions taken by the children.

Collusion, family-centric decision making, adulteration of information provided to patients, and circumnavigation of patient involvement appear to be context-dependent. Patients and families alike believe that patients should be told of their conditions. However, the incidence of collusion and familial determination increases with determinations of a poor prognosis, a poor anticipated response to chemotherapy, and a poor premorbid health status. Financial considerations with respect to care determinations remain secondary considerations.

Our data suggest that ACPs can be effectively constructed in family-centric societies so long as healthcare professionals continue to update and educate families on the patient's situation. Collusion and familial intervention in the decision-making process are part of efforts to protect the patient from distress and are neither solely dependent on cultural nor an “all-or-nothing” phenomenon. The response of families are context-dependent and patient-specific, weighing the patient's right to know and prepare and the potential distress it is likely to cause. In most cases, the news is broken gently over time to allow the patient to digest the information and for the family to assess how well they cope with the news. Furthermore, the actions of families are dependent upon their understanding of the situation, highlighting the need for continued engagement with healthcare professionals.

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.

A high incidence of burnout has been reported in health professionals working in palliative care units. Our present study aims to determine whether there are differences in the secretion of salivary cortisol between palliative care unit health professionals with and without burnout, and to elucidate whether there is a relationship between burnout syndrome and perceived stress and psychopathological status in this population.

A total of 69 health professionals who met the inclusion criteria participated in our study, including physicians, nurses, and nursing assistants. Some 58 were women (M = 29.65 years, SD = 8.64) and 11 men (M = 35.67 years, SD = 11.90). The level of daily cortisol was registered in six measurements taken over the course of a workday. Burnout syndrome was evaluated with the Maslach Burnout Inventory–Human Services Survey (MBI–HSS), the level of perceived stress was measured using the Perceived Stress Scale, and psychopathological status was gauged using the SCL–90–R Symptoms Inventory.

There were statistically significant differences in secretion of cortisol in professionals with high scores on a single subscale of the MBI–HSS [F(3.5) = 2.48, p < 0.03]. This effect was observed 15–30 minutes after waking up (p < 0.01) and at bedtime (p < 0.06). Moreover, the professionals with burnout showed higher scores on the psychopathology and stress subscales than professionals without it.

A higher score in any dimension of the burnout syndrome in palliative care unit health professionals seems to be related to several physiological and psychological parameters. These findings may be relevant for further development of our understanding of the relationship between levels of burnout and cortisol secretion in the health workers in these units.

Teenagers are living through a turbulent period in their development, when they are breaking away from the family to form their own identities, and so they are particularly vulnerable to the stressful situation of having a parent affected by a progessive and incurable illness. The current study sought to gain more knowledge about the ways that teenagers themselves describe living in a family with a seriously ill and dying parent. More specifically, the aims were to describe how teenagers are emotionally affected by everyday life in a family with a dying parent and to determine how they attempt to adapt to this situation.

The study employed a descriptive and interpretive design using qualitative content analysis. A total of 10 teenagers (aged 14–19 years, 7 boys and 3 girls) participated through repeated, individual, informal interviews that were carried out as free-ranging conversations.

While contending with their own vulnerable developmental period of life, the teenagers were greatly affected by their parent's illness and took on great responsibility for supporting their parents and siblings, and for maintaining family life. Lacking sufficient information and support left them rather unprepared, having to guess and to interpret the vague signs of failing health on their own, with feelings of uncertainty and loneliness as a consequence.

Support from healthcare professionals should be designed to help and encourage parents to have open communications about their illness with their teenaged children. Our results add further support to the literature, reinforcing the need for an approach that uses a systemic perspective and considers the family to be the appropriate unit of care and offers a suitable support system.