The purpose of this study was to explore the hope experience of registered nurses (RNs) who provide palliative care services in community settings. The specific aims of the study were to (1) describe their hope experience, (2) develop a reflexive understanding of the processes of their hope, and (3) construct a substantive theory of hope of palliative care RNs.

Using constructivist grounded theory methodology, purposeful theoretical sampling was used to enroll 14 practicing community palliative care RNs in the study. Twenty-seven open-ended telephone interviews were conducted and nine daily journal entries on hope were copied. Interviews and journals were transcribed verbatim and analyzed using Charmaz's grounded theory approach.

Participants described their hope as a positive state of being involving a perseverant and realistic understanding of future possibilities. Their hope sustained and motivated them, and helped them to strive to provide high-quality care. The main concern for participants was keeping their hope when faced with work life challenges and contrasting viewpoints (i.e., when their hopes differed from the hopes of others around them). They dealt with this through harmonizing their hope by the processes of “looking both ways,” “connecting with others,” “seeing the bigger picture,” and “trying to make a difference.” Their experience of hope was defined within the social context of their work and lives.

The results of this study suggest that hope is very important to palliative care RNs, in that it helps them to persevere and sustains them when faced with work life challenges in their practice. This study also highlights the need for continued research in this area as there appears to be a lack of evidence on the meaning of hope for healthcare professionals, and, in particular, understanding hope in the context of palliative and end-of-life care delivery.

The experience of hope among cancer patients in palliative care is important information for healthcare providers, but research on the subject is sparse. The aim of this article was to explore how cancer patients admitted to palliative home care experienced the significance of hope and used hope during 6 weeks throughout the last phase of their life, and to assess their symptoms and hope status during 6 weeks throughout the last phase of their lives.

Eleven adult patients with cancer participated in 20 interviews and completed seven diaries. The participants were recruited from two palliative care units in the southeast of Sweden. The method used was Grounded Theory (GT), and analysis was based on the constant comparative method.

The core category, glimmering embers, was generated from four processes: (1) The creation of “convinced” hope, with a focus on positive events, formed in order to have something to look forward to; (2) The creation of “simulated hope,” including awareness of the lack of realism, but including attempts to believe in unrealistic reasons for hope; (3) The collection of and maintaining of moments of hope, expressing a wish to “seize the day” and hold on to moments of joy and pleasure; and (4) “Gradually extinct” hope, characterized by a lack of energy and a sense of time running out.

The different processes of hope helped the patients to continue to live when they were close to death. Hope should be respected and understood by the professionals giving them support.

The Bereavement Risk Assessment Tool (BRAT) was designed to consistently communicate information affecting bereavement outcomes; to predict the risk for difficult or complicated bereavement based on information obtained before the death; to consider resiliency as well as risk; and to assist in the efficacy and consistency of bereavement service allocation. Following initial development of the BRAT's 40 items and its clinical use, this study set out to test the BRAT for inter-rater reliability along with some basic validity measures.

Case studies were designed based on actual patients and families from a hospice palliative care program. Bereavement professionals were recruited via the internet. Thirty-six participants assessed BRAT items in 10 cases and then estimated one of 5 levels of risk for each case. These were compared with an expert group's assignment of risk.

Inter-rater reliability for the 5-level risk scores yielded a Fleiss’ kappa of 0.37 and an intra-class correlation (ICC) of 0.68 (95% CI 0.5-0.9). By collapsing scores into low and high risk groups, a kappa of 0.63 and an ICC of 0.66 (95% CI 0.5-0.9) was obtained. Participant-estimated risk scores yielded a kappa of 0.24. Although opinion varied on the tool's length, participants indicated it was well organized and easy to use with potential in assessment and allocation of bereavement services. Limitations of the study include a small sample size and the use of case studies. Limitations of the tool include the subjectivity of some items and ambiguousness of unchecked items.

The collapsed BRAT risk levels show moderately good inter-rater reliability over clinical judgement alone. This study provides introductory evidence of a tool that can be used both prior to and following a death and, in conjunction with professional judgment, can assess the likelihood of bereavement complications.

This study assessed the factor structure, internal consistency, and concurrent and discriminant validity of a scale used to measure social distress in Japanese head and neck cancer outpatients with facial disfigurement.

The sample included 225 Japanese outpatients with head and neck cancer, including 129 patients with facial disfigurement. Participants' level of social distress was assessed through our scale, the European Organization for Research and Treatment Cancer questionnaire (EORTC) QLQ-H&N35 and the Hospital Anxiety and Depression scale (HADS).

Factor analyses confirmed the structure of two subscales of the social distress scale. Social distress was significantly correlated with the social contact subscale of the EORTC QLQ-H&N35 and the HADS.

Results demonstrated preliminary reliability and validity of the social distress scale. This scale may extend social adjustment research by revealing its determinants and effects for head and neck cancer with facial disfigurement in Japan.

This qualitative study aimed to describe the skill sets that experienced palliative care clinicians possess when managing refractory suffering.

Thirteen tape recorded semi-structured interviews and four online questionnaires were completed by participants with at least two years clinical palliative care experience. The research team undertook cross sectional thematic analysis of the transcribed interviews.

In the face of refractory suffering, team cohesion was identified as a key requirement to support the interdisciplinary team. However, team cohesion was found to be undermined by philosophical differences between team members, a paradigm shift concerning cure versus care and individual opinions regarding the chosen approach and levels of respect between the individual disciplines involved in the care of a person with a life limiting illness.

The findings of this study highlight the precarious nature of the interdisciplinary team when significant challenges are faced. As a result of witnessing refractory suffering the division and fracturing of teams can easily occur; often team members are completely unaware of its cause. The findings of this study contribute to the limited literature on the nature of refractory suffering from the perspective of the interdisciplinary team.

To describe enrolled nurses' (ENs') experiences of working in a sitting service for dying patients at home (SSH).

The ENs who participated in this study had permanent jobs in community care/ primary care, but were also employed part time in a special home-sitting service organization in a municipality in the south of Sweden. Data were collected by four focus group interviews with 17 enrolled nurses. Qualitative content analysis was used to analyze the data.

Care-giving in SSH was a balancing act between a sense of security and a feeling of vulnerability. Feeling secure and valued and that one is developing both professionally and personally, stemmed from working in partnership, whereas a feeling of vulnerability was associated with managing closeness and distance, being a mediator, having responsibility and feeling guilty, feeling hindered from doing good, facing loneliness, and affecting private lives.

SSH makes it possible for people who are terminally ill to remain at home until they die. If the SSH organization were not an option for dying patients and their families, the pressure on the healthcare would be dramatically increased.

This study compared the prevalence of anxiety and depression as measured on the Hospital Anxiety and Depression Scale (HADS) in palliative care patients being treated at home with those being treated as inpatients.

The participants were palliative care patients being treated at home (n = 46) and palliative care inpatients (n = 46). Subjects were assessed for functionality on the Karnofsky Performance Status Scale (KPS) and anxiety and depression were measured on the HADS.

The results showed that ~20% of all patients were depressed and anxious as measured on the HADS, regardless of the cutoff criteria. There was no significant difference in depression and anxiety between the two groups when socioeconomic status and functionality were controlled for. Functionality, as measured on the KPS, was uniquely a predictor of depression, and younger patients were shown to have greater anxiety.

The results suggest that home-based palliative care patients and palliative care inpatients should receive equal psychological support, and that clinicians need to be aware of the psychological vulnerability of younger and less-functional patients. The prevalence of depression and anxiety indicates that all palliative care patients should be screened for psychological distress, to identify those who need further assessment and treatment.

The aims of this study of women with breast cancer were: to describe the levels of hope and compare hope scores for these patients with a sample from the general Norwegian population; to describe the relationship between hope and fatigue; and finally to evaluate the effect of demographic and clinical characteristics and fatigue on hope.

A total of 160 Norwegian outpatients with cancer and fatigue (>2.5 on a 0–10 scale) completed the Herth Hope Index (HHI), Fatigue Questionnaire (FQ), and Self-administered Comorbidity Questionnaire (SCQ).

The mean age of the women was 55.3 years (SD = 9.4), 81% lived with someone, and 67% were employed. The most common comorbidities were back pain (42%), osteoarthritis (26%), and headache (19%). The fatigued breast cancer patients reported significantly higher total hope scores than the general Norwegian population (p < .0001). The difference was largest in the individual item “I can see a light in the tunnel,” to which the cancer sample reported the highest scores, but they also felt more “scared about the future.” Total hope score was negatively correlated with total fatigue (TF), mental fatigue (MF), and chronic fatigue (CF), but not with physical fatigue (PF). Demographic and clinical characteristics were not significantly related to hope, except that patients who were married or living with someone showed significantly higher total hope scores.

The higher levels of hope in breast cancer patients compared with the general Norwegian population may reflect a response shift in patients after getting a cancer diagnosis. The fact that a significant relationship was found between total hope scores and living arrangements may indicate that hope is easier to establish when patients have someone to relate to or receive support from. Hope and total fatigue were significantly, but weakly correlated.

The purpose of this study was to assess the impact of a palliative medicine consultation on medical intensive care unit (MICU) and hospital length of stay, Do Not Resuscitate (DNR) designation, and location of death for MICU patients who died during hospitalization.

A comparison of two retrospective cohorts in a 17-bed MICU in a tertiary care university-affiliated hospital was conducted. Patients admitted to the MICU between January 1, 2003 and June 30, 2004 (N = 515) were compared to MICU patients who had had a palliative medicine consultation between January 1, 2005 and June 1, 2009 (N = 693). To control for disease severity, only patients in both cohorts who died during their hospitalization were considered for this study.

Palliative medicine consultation reduced time until death during the entire hospitalization (log-rank test, p < 0.01). Time from MICU admission until death was also reduced (log-rank test, p < 0.01), further demonstrating the impact of the palliative care consultation on the duration of dying for hospitalized patients. The intervention group contained a significantly higher percentage of patients with a DNR designation at death than did the control group (86% vs. 68%, χ2 test, p < 0.0001).

Palliative medicine consultation is associated with an increased rate of DNR designation and reduced time until death. Patients in the intervention group were also more likely to die outside the MICU as compared to controls in the usual care group.

The aim of this study was to explore the experiences and preferences of terminally ill cancer patients regarding truth telling in the communication of poor prognoses.

We recorded and transcribed interviews with 45 patients who knew their cancer was terminal, and analyzed their responses hermeneutically.

Patients identified three different modes of truth: (1) the absolute objective truth that they are dying; (2) the partial truth about their condition including some facts but not all of the details; and (3) the desired truth, originating in the patient's own beliefs about a healthy or better life. Coping strategies were related to patients’ preferred mode of truth: (1) facing the truth in order to take action; (2) facing some parts of the truth in order to maintain hope; and (3) hovering between facing and avoiding the truth. In their struggle for existential survival, patients used different coping strategies, changing from one to another depending upon the circumstances.

Varying use of different coping strategies impacts on patient preferences concerning communication about bad news with their doctors. Truth-telling entails more than merely providing information related to the forthcoming death. It also concerns how physicians or other healthcare staff can support the patient's existential survival by fine-tuning the communication of “truth” according to the individuals’ preferences.

The number of diagnosed cases of stomach cancer in Western countries is relatively small compared to prevalence rates in Eastern populations. This disparity creates a general lack of information and understanding of the experience of patients treated for this disease in North America. Surgical removal of the stomach, also called total gastrectomy (TG), is presently the only curative treatment available to patients with stomach cancer. Considering the impact such a procedure may have, very little is known about what factors influence an individual's postsurgical quality of life (QL).

This article reviews current literature and examines three unique case studies. Semi-structured interviews were analyzed using content analysis, a qualitative analytic approach for reporting combined subject responses.

Participants included one 37-year-old man with multiple polyps in his stomach and a family history of stomach cancer, one 18 year-old man with a confirmed CDH1 mutation and a family history of stomach cancer, and one 33-year-old man with confirmed metastatic gastric adenocarcinoma. Subjective patient experience was categorized into: (1) making the decision, (2) treatment impact, and (3) life after TG. Prior to surgery, all patients carefully evaluated their perceived risk compared to the treatment consequences and indicated that a certain event triggered their decision. The largest treatment impacts were learning to eat again and adjusting to the physical changes. Each patient endorsed that their experience made them appreciate and make the most of life.

This currently represents the only study to investigate the lived experience of TG for prophylaxis or palliation in individuals with and without genetic risk for stomach cancer. Understanding this process will allow all members of the cancer care team, and the patients themselves, to better understand the factors involved in decision making and postoperative adjustment. Fruitful avenues for future research are discussed.

Because caregiving to an adult with cancer is a dynamic process, a caregiver's perceived burden and psychosocial concerns may be different at different phases of the patient's disease. There is evidence of escalation in caregiver anxiety, depression, and psychological distress as the patient's functional status declines and as the patient nears death. The purpose of this review was to organize the literature in a meaningful way that can potentially capture the unique needs of caregivers to patients receiving palliative and/or hospice care, and caregivers who are in the post-death bereavement phase.

A systematic review was conducted. Major databases were searched for non-intervention descriptive studies that included psychosocial variables of family caregivers to adults with cancer during the palliative, hospice, or bereavement phases.

The 19 studies reviewed were conducted in six countries and varied considerably by samples, outcome measures, methodologies, and analytic approaches. Despite limiting to the palliative, hospice, and bereavement phases, inconsistent results were found for key variables, such as age, gender, and relationship to the patient. When patient–caregiver dyad analysis was conducted, with rare exception, there was mutuality between the patient's condition and the caregiver's response. Across the 19 studies, 89 unique instruments were used, almost half of which were study specific with no psychometric testing reported.

As a direct consequence of assuming the caregiver role, cancer family caregivers in the palliative, hospice, and bereavement phases are at increased risk for physical and mental morbidity. Often, the psychological burden of the caregiver exceeds that of the critically ill patient. It is possible that distressed caregivers have a deleterious influence on patient well-being. This review demonstrates the need to develop research standards, especially regarding measurement instruments, so that caregiver research can mature and interventions can be developed to support family caregivers.

Late or non-referral of patients to specialist palliative care (SPC) services may affect patients' and their carers' quality of care. General practitioners (GPs) are key professionals in linking people with SPC. The aim of this article is to assess GPs' perceptions and SPC referrals for their patients with advanced cancer and differences between metropolitan (M GPs) and non-metropolitan GPs (NM GPs).

Self-report survey mailed to a stratified random sample of 1,680 Australian GPs was used.

Thirty-one percent (469) of eligible GPs returned surveys. More M GPs than NM GPs reported referring >60% of their patients for SPC (p = 0.014); and that a more comprehensive range of SPC services was available. The most frequently reported referral prompts were: presence of terminal illness (M GPs, 71%, NM GPs, 66%, ns (not significant)); future need for symptom control (69% vs. 59%, ns) and uncontrolled physical symptoms (63% vs. 54%, ns). Reasons for not referring were: doctor's ability to manage symptoms (62% vs. 68%, ns) and the absence of symptoms (29% vs. 18%, p = 0.025). Higher referral was associated with: having a palliative care physician or consultative service available; agreeing that all patients with advanced cancer should be referred, and agreeing that with SPC, the needs of the family are better met.

Referrals for SPC were primarily disease-related rather than for psychological and emotional concerns. Measures are needed to encourage referrals based upon psychosocial needs as well as for physical concerns, and to support GPs caring for people with advanced cancer in areas with fewer comprehensive SPC services.

Advance care planning (ACP) provides patients with an opportunity to consider, discuss, and plan their future care with health professionals. Numerous policy documents recommend that ACP should be available to all with life-limiting illness.

Forty patients with recurrent progressive cancer completed one or more ACP discussions with a trained planning mediator using a standardized topic guide. Fifty-two interviews were transcribed verbatim and analyzed for qualitative thematic content.

Most patients had not spoken extensively to health professionals or close persons about the future. Their concerns related to experiencing distressing symptoms or worrying how family members would cope. Some patients wished for more accurate information and were unaware of their options for care. Many felt it was doctors' responsibility to initiate such discussions, but perceived that their doctors were reluctant to do so. However, some patients felt that the time was not yet right for these conversations.

This article reports on the recorded content of ACP discussions. The extent to which patients want to engage in ACP is variable, and support and training are needed for health professionals to initiate such discussions. Our findings do not fully support the current United Kingdom policy of introducing ACP early in life-threatening disease.

The findings from several studies suggest that palliative care patients with advanced cancer experience multiple symptoms, and that these symptoms may be related to demographic and clinical factors as well as to patient outcomes. However, no systematic review has summarized the findings from studies that assessed multiple symptoms, predictors, and outcomes in these patients. The purposes of this review, focused on palliative care patients with advanced cancer, are to: 1) describe the relationships among multiple symptoms; 2) describe the predictors of multiple symptoms; and 3) describe the relationships between multiple symptoms and patient outcomes.

Comprehensive literature searches were completed using the following databases: PubMed, Cumulative Index to Nursing and Allied Health Literature, and PsychInfo. The key words: cancer or advanced cancer or neoplasm, AND palliative care or terminal care or hospice or end-of-life, AND symptoms or multiple symptoms or symptom clusters were combined.

Twenty-two studies met the inclusion criteria and examined at least one of our purposes. The majority of these studies were descriptive and used one of four common symptom assessment scales. Fifty-six different signs and symptoms were evaluated across various dimensions (i.e., prevalence, severity, distress, frequency, control). Pain, dyspnea, and nausea were the only symptoms measured in all 22 studies. Relationships among concurrent symptoms were examined in nine studies. Relationships among symptoms and predictors (i.e., demographics, cancer type, healthcare delivery environment) were examined in seven studies. Relationships among symptoms and outcomes (i.e., functional status, psychological status, quality-of-life, survival time) were examined in 14 studies. Significant methodological variation was found among these studies.

It is difficult to draw conclusions about the relationships among multiple symptoms, predictors, and outcomes due to the heterogeneity of these studies. Future research is needed to determine which symptoms and symptom dimensions to assess in order to better understand how multiple symptoms relate to each other as well to as predictors and outcomes in palliative care patients with advanced cancer.

The purposes of this study were: (1) to explore cancer patients' complaints of poor sleep, which often involve a combination of somatic symptoms and nightmares; and (2) to understand these sleep disturbances in the light of modern dream theories and intervention modalities.

 The literature search originated with several major articles (Revonsuo, 2000; Krakow & Zadra, 2006; Hobson, 2009) which then opened up the search through their references.  We also used the database PubMed, and employed the following key words:  cancer, nightmares/dreams, sleep disturbances, and dream theory. The literature search covered the interval between 1900 (Freud, 1900) and 2009. Our criteria for selecting studies included the most recent major review articles on the neuroscience of sleep and dreams; articles reviewing sleep disturbances in cancer patients and relevant treatments; and articles reviewing interventions for traumatic dreams.  Approximately 30 articles were deemed worthy of inclusion.

Thirty article/books/chapters met the criteria for relevance related to key theories and clinical interventions related to nightmares and traumatic dreams of cancer patients. Key concepts involve threat simulation theory and imagery rehearsal therapy in regard to theoretical and interventional paradigms significantly generalizable to cancer patients. The dream material included in this article presents patients' attempts to deal with complex threats such as intense dependency/ loss of self-sufficiency, disfigurement, and death. This is especially true with regard to the doctor–patient relationship at all stages of the illness and disease. Imagery rehearsal can facilitate empowerment in light of highly threatening and conflictual cancer-related dreams in which the patient feels helpless and victimized.

This review offers a new lens on current dream theories and understanding of sleep disturbance in cancer patients as well as their familes and medical caregivers. Modern theories lead to opportunities for intervention that can both relieve symptoms and improve communication between medical caregivers and patients and families.