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.

Meaning and Purpose (MaP) therapy aims to enhance meaning-based coping through a life review that focuses on the value and worth of the person, key relationships, sources of fulfillment, roles, and future priorities in living life out fully. We sought to test the feasibility and acceptability of a six-session model of MaP therapy against a wait-list control cohort in a pilot study seeking effect sizes on measures of adaptation.

We randomized patients with advanced cancer to MaP therapy or wait-list control, with measures administered at baseline and after 6–8 weeks. Wait-list patients could then crossover to receive therapy, with further measures collected postintervention. Adherence to the manualized model was sustained through weekly supervision and fidelity coding of recorded sessions. We used generalized estimating equations to control for baseline and any correlation of data.

From 134 eligible participants, 57 (43%) consented, and 40 of 45 (89%) offered therapy completed 6 sessions. Key barriers to consenting patients were poor health (15 refusers and 4 withdrawals) and death intervened in 6 participants. MaP therapy generated adequate effect sizes in posttraumatic growth (new possibilities, appreciation of life, and personal strength) and life attitudes (choices and goal seeking) to permit calculation of power for a formal randomized, controlled trial.

Delivery of this model of existentially oriented therapy is feasible and acceptable to patients. A properly powered randomized controlled trial is justified to examine the efficacy of this intervention.

The purpose of this study was to describe relatives' experience of patient care and the support they themselves received during the course of disease progression.

A total of 15 relatives were included from two neurology clinics in Sweden: 7 wives, 4 husbands, and 4 daughters. Data were collected through qualitative interviews 6 to 12 months after the patient had died. Content analysis was performed to analyze the interviews.

The results showed that patient care was experienced as positive and as being based on the patient's needs and desires. Treatment from the staff, support and help, knowledge, availability, and continuity among the team were important reasons for the relations to feel secure. In addition, support for relatives was available, but different factors influenced its use. Most relatives did not think about their own needs but focused on the patient.

It is important that care and support for both patients and relatives be based on individual needs. The staff members responsible for providing this care and support must have knowledge and experience of the disease and its specific care. If they do not belong to an ALS (amyotrophic lateral sclerosis) team, they may require further education and support. The relatives focus on the patient's situation and do not think of their own needs. It is therefore important that health professionals be observant of the relatives and offer them help and support to better manage their situation.

Diagnosing depressive disorders in palliative care is challenging because of the overlap between some depressive symptoms and cancer-related symptoms, such as loss of appetite and fatigue. In order to improve future assessment of depression in palliative care, depressive symptoms experienced by patients receiving pharmacological treatment for depression were assessed and compared to the American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders, 4th ed. (DSM-IV) criteria for major depressive disorder.

Thirty Norwegian (n = 20) and Austrian (n = 10) patients with advanced cancer were included. Semistructured interviews on symptom experiences were conducted and transcribed verbatim. By the phenomenographic method, patients' symptom experiences were extracted and sorted by headings, first individually and then across patients. The patients subsequently rated 24 symptoms numerically including the DSM-IV depression criteria.

Lowered mood and a diminished motivational drive were prominent and reflected the two main DSM-IV symptom criteria. A relentless focus on their actual situation, restlessness, disrupted sleep, feelings of worthlessness, feelings of guilt, and thoughts of death as a solution were variably experienced. Appetite and weight changes, fatigue and psychomotor retardation were indistinguishable from cancer symptoms. All these symptoms reflected DSM-IV symptom criteria. Some major symptoms occurred that are not present in the DSM-IV symptom criteria: despair, anxiety, and social withdrawal. The numerical ratings of symptoms were mainly in accordance with the findings from the qualitative analysis.

Despair, anxiety, and social withdrawal are common symptoms in depressed patients with incurable cancer, and, therefore, hypothesized as candidate symptom criteria. Other symptom criteria might need adjustment for improvement of relevance in this group of patients.

The purpose of this study was to examine siblings’ long-term psychological health in relation to their perception of communication with their family, friends, and healthcare professionals during a brother or sister's last month of life.

A nationwide questionnaire study was conducted during 2009 in Sweden of individuals who had lost a brother or sister to cancer within the previous two to nine years. Of the 240 siblings contacted, 174 (73%), participated. The Hospital Anxiety and Depression Scale (HADS) was employed to assess psychological health (anxiety). The data are presented as proportions (%) and relative risks (RR) with a 95% confidence interval (CI95%).

Siblings who were not satisfied with the amount they talked about their feelings with others during their brother or sister's last month of life were more likely to report anxiety (15/58, 26%) than those who were satisfied (13/115, 11%; RR = 2.3(1.2–4.5)). The same was true for those who had been unable to talk to their family after bereavement (RR = 2.5(1.3–4.8)). Avoiding healthcare professionals for fear of being in their way increased siblings’ risk of reporting anxiety at follow-up (RR = 2.2(1.1–4.6)), especially avoidance in the hospital setting (RR = 6.7(2.5–18.2)). No such differences were seen when the ill brother or sister was cared for at home.

Long-term anxiety in bereaved siblings might be due to insufficient communication. Avoiding healthcare professionals, especially when the brother or sister is cared for at the hospital, may also increase the risk of anxiety.

The traditional relationship between patient and physician in East Asian society has often been described as “paternalistic.” However, in an increasingly Westernized world, our knowledge of how patients perceive the role of the physician in their decision making regarding treatment is lacking.

This article is part of a larger pilot study exploring the patient–physician dynamic on decision making among Southeast Asian palliative cancer patients. We explore: (1) influence of physicians, (2) the effect of symptom control and quality of life, and (3) dynamics and communication of physicians.

An interviewer-administered questionnaire was distributed, with 18 questions related to physician–patient interactions asked. Most questions followed a three point scale: “agree,” “neutral,” and “disagree,” and spontaneous answers beyond this framework were recorded.

Thirty patients from the palliative care service were interviewed, including inpatients at Singapore General Hospital and those attending outpatient clinics at the National Cancer Centre.

Patients said that they themselves and their physicians were the main influences (80% each), over family members (48.3%). Some patients (26.7%) felt that symptoms were not well controlled, and 42.9% identified low mood or anxiety. Some patients (44.8%) felt that their condition had an effect on decision making. Most patients (89.3%) had a good relationship with the staff, with >80% being comfortable with discussions held. However, 20.7% of patients felt dissatisfied with the information provided, and 62.1% of patients wanted full disclosure of information.

Patients appeared to place highest regard in both autonomy and physician input in making decisions, accompanied by an increased desire for more information. These reflect deviation away from traditional thinking of paternalistic doctoring in East Asia.

Advance care planning (ACP) is identified as being an important process for people with dementia. However, its efficacy for improving outcomes relevant for the individual, carers and the health system has yet to be established.

We conducted a systematic review with the aims of testing the efficacy of ACP for people with dementia and describing the settings and population in which it has been evaluated.

A search was completed of electronic databases in August 2016. Articles were included if they described interventions aimed at increasing planning for future care of people with dementia, delivered to the person with dementia, their carers and/or health professionals.

Of 4,772 articles returned by searches, 30 met the inclusion criteria, testing interventions in nursing home (n= 16) community (n = 10) and acute care (n = 4) settings. Only 18 interventions directly involved the person with dementia, with the remainder focusing on surrogate decision-makers. In all settings, interventions were found effective in increasing ACP practice. In nursing homes, ACP was found to influence care and increase the concordance between end of life wishes and care provided. Interventions in the community were found to improve patient quality of life but were not shown to influence concordance.

Future research should focus on ways to involve people with dementia in decision-making through supported means.

The end stage of chronic obstructive pulmonary disease (COPD) is described as prolonged, and the symptom burden for patients with COPD is often high. It progresses slowly over several years and can be punctuated by abrupt exacerbations that sometimes end in sudden death or a recovery of longer or shorter duration. This makes it difficult to identify the critical junctures in order to prognosticate the progress and time of death. Patients with COPD often express a fear that the dying process is going to be difficult. There is a fear that the dyspnea will worsen and lead to death by suffocation. The present article aimed to retrospectively describe the final year of life for patients with advanced COPD with a focus on death and dying from the perspective of relatives.

Interviews were conducted with the relatives of deceased family members who had advanced COPD. In total, 13 interviews were conducted and analyzed by means of content analysis.

All relatives described the patients as having had a peaceful death that did not correspond with the worry expressed earlier by both the patients and themselves. During the final week of life, two different patterns in the progress of the illness trajectory emerged: a temporary improvement where death was unexpected and a continued deterioration where death was inevitable.

The patients and their relatives lived with uncertainty up until the time of death. Little support for psychosocial and existential needs was available. It is essential for the nurse to create relationships with patients and relatives that enable them to talk about dying and death on their own terms.

Anxiety often arises in conjunction with dyspnoea in patients with severe COPD. Considering the provoking symptomatology and the high mortality rate for COPD, it is reasonable to believe that these conditions trigger death-related and existential anxiety. Although anxiety causes considerable distress and reduces quality of life, people's experience of anxiety has been studied relatively little. The aim of this study was to explore severely ill COPD patients’ experience of anxiety and their strategies to alleviate anxiety.

This qualitative, in-depth interview study explored perceptions of anxiety and the alleviation strategies that are adopted. Interviews were analyzed using a thematic content analysis approach, involving interpretive coding and identification of themes. People suffering from COPD (stage III or IV) were recruited from a pulmonary outpatient clinic in the west of Sweden. Purposive sampling was used, and thirty-one (31) patients were included.

Most of the patients had experienced anxiety associated with COPD. Analyses revealed three major themes, death anxiety, life anxiety, and counterweights to anxiety. Death anxiety included fear of suffocation, awareness of death, fear of dying and separation anxiety. Life anxiety included fear of living and fear of the future. Counterweights to anxiety concerned coping with suffocation, avoiding strategy, and a sense of joy that defied their vulnerable situation.

The majority of patients experienced anxiety, which limited their lives. Although the patients experienced both life anxiety and death anxiety, they were able to cope with the situation and find a defiant joy to some extent.

Palliative care for children is becoming an important subspecialty of healthcare. Although concurrent administration of curative and palliative care is recommended, timely referral to pediatric palliative care (PPC) services remains problematic. This literature review aims to identify barriers and recommendations for proper implementation of palliative care for children through the looking glass of PPC guidelines.

To identify studies on PPC guidelines, five databases were searched systematically between 1960 and 2015: Scopus, PubMed, PsycINFO, the Web of Science, and CINAHL. No restrictions were placed on the type of methodology employed in the studies.

Concerning barriers, most of the papers focused on gaps within medical practice and the lack of evidence-based research. Common recommendations therefore included: training and education of healthcare staff, formation of a multidisciplinary PPC team, research on the benefits of PPC, and raising awareness about PPC. A small number of publications reported on the absence of clear guidance in PPC documents regarding bereavement care, as well as on the difficulties and challenges involved in multidisciplinary care teams.

Our results indicate that a critical assessment of both the research guidelines and medical practice is required in order to promote timely implementation of PPC for pediatric patients.

In the last decade, some attention has been given to spirituality and faith and their role in cancer patients' coping. Few data are available about spirituality among cancer patients in Southern European countries, which have a big tradition of spirituality, namely, the Catholic religion. As part of a more general investigation (Southern European Psycho-Oncology Study – SEPOS), the aim of this study was to examine the effect of spirituality in molding psychosocial implications in Southern European cancer patients.

A convenience sample of 323 outpatients with a diagnosis of cancer between 6 to 18 months, a good performance status (Karnofsky Performance Status > 80), and no cognitive deficits or central nervous system (CNS) involvement by disease were approached in university and affiliated cancer centers in Italy, Spain, Portugal, and Switzerland (Italian speaking area). Each patient was evaluated for spirituality (Visual Analog Scale 0-10), psychological morbidity (Hospital Anxiety and Depression Scale— HADS), coping strategies (Mini-Mental Adjustment to Cancer — Mini-MAC) and concerns about illness (Cancer Worries Inventory — CWI).

Results. The majority of patients (79.3%) referred to being supported by their spirituality/faith throughout their illness. Significant differences were found between the spirituality and non-spirituality groups (p ≤ 0.01) in terms of education, coping styles, and psychological morbidity. Spirituality was significantly correlated with fighting spirit (r = −0.27), fatalism (r = 0.50), and avoidance (r = 0.23) coping styles and negatively correlated with education (r = −0.25), depression (r = −0.22) and HAD total (r = −0.17).

Spirituality is frequent among Southern European cancer patients with lower education and seems to play some protective role towards psychological morbidity, specifically depression. Further studies should examine this trend in Southern European cancer patients.

Increasingly, family or friends are providing care to those with cancer. However, the majority of those assuming the caring role have no prior knowledge related to the provision of care. The present study aimed to explore the experiences of informal carers with respect to their role, thus determining ways that services may support transition to this role.

In order to obtain an in-depth view of such experience, a qualitative meta-synthesis was employed to review the findings of 17 studies.

Out of this synthesis, three main concepts were developed: (1) identity and adopting the caring role, (2) the perception of care tasks, and (3) relationship dynamic changes as a result of caring.

The implications for professional practice are discussed.

Approximately 75% of prescription opioid abusers obtain the drug from an acquaintance, which may be a consequence of improper opioid storage, use, disposal, and lack of patient education. We aimed to determine the opioid storage, use, and disposal patterns in patients presenting to the emergency department (ED) of a comprehensive cancer center.

We surveyed 113 patients receiving opioids for at least 2 months upon presenting to the ED and collected information regarding opioid use, storage, and disposal. Unsafe storage was defined as storing opioids in plain sight, and unsafe use was defined as sharing or losing opioids.

The median age was 53 years, 55% were female, 64% were white, and 86% had advanced cancer. Of those surveyed, 36% stored opioids in plain sight, 53% kept them hidden but unlocked, and only 15% locked their opioids. However, 73% agreed that they would use a lockbox if given one. Patients who reported that others had asked them for their pain medications (p = 0.004) and those who would use a lockbox if given one (p = 0.019) were more likely to keep them locked. Some 13 patients (12%) used opioids unsafely by either sharing (5%) or losing (8%) them. Patients who reported being prescribed more pain pills than required (p = 0.032) were more likely to practice unsafe use. Most (78%) were unaware of proper opioid disposal methods, 6% believed they were prescribed more medication than required, and 67% had unused opioids at home. Only 13% previously received education about safe disposal of opioids. Overall, 77% (87) of patients reported unsafe storage, unsafe use, or possessed unused opioids at home.

Many cancer patients presenting to the ED improperly and unsafely store, use, or dispose of opioids, thus highlighting a need to investigate the impact of patient education on such practices.

Advanced cancer patients often develop severe physical and psychological symptom clusters (SCs), but limited data exist on their consistency or severity after an outpatient interdisciplinary team consultation led by palliative care specialists. The primary aim of the study was to determine the consistency and severity of SCs in advanced cancer patients in this setting.

A total of 1373 patients with advanced cancer who were referred to The University of Texas MD Anderson Cancer Center's Outpatient Supportive Care Center between January 2003 and October 2008 with a complete Edmonton Symptom Assessment Scale (ESAS; 0–10 scale) occurred at initial and first follow-up visit were reviewed (median 14 days, range 1–4 weeks). We used a Wilcoxon signed-rank test to determine whether symptoms changed over time, and a principal components factor analysis with varimax rotation to determine SCs at baseline and at first follow-up. The number of factors calculated was determined based upon the number of eigenvalues.

The patients' ratings of the following symptoms (mean, SD) at the initial and follow-up visits, respectively, were: fatigue 6.2 (2.3) and 5.7 (2.5, p < 0.0001), pain 5.4 (2.9) and 4.6 (3, p < 0.0001), nausea 2.2 (2.8) and 2.0 (2.6, p < 0.0001), depression 3.0 (2.9) and 2.5 (2.7, p < 0.0001), anxiety 3.4 (3.0) and 2.8 (2.8, p < 0.0001), drowsiness 4.8 (3.1) and 4.4 (3.1, p < 0.0001), dyspnea 3.0 (2.9) and 2.7 (2.8), p < 0.0001), loss of appetite 4.2 (2.7) and 3.9 (2.7, p < 0.0001), sleep disturbances 4.2 (2.6) and 3.8 (2.6, P < 0.0001), and well-being 4.3 (2.5) and 3.9 (2.3, p < 0.0001). Cluster composition differentiated into physical (fatigue, pain, nausea, drowsiness, dyspnea, and loss of appetite) and psychological (anxiety and depression) components at the initial visit, and these two SCs were consistent upon follow-up.

We conclude that SCs remain constant between baseline and near-term follow-up but that the severity of those symptoms lessened during that interval. This knowledge may allow palliative care teams to provide more targeted and higher-quality care, but further studies are needed.

Many cancer centers struggle to implement standardized distress screening despite the American College of Surgeons’ Commission on Cancer 2012 mandate for a distress screening program standard of care by 2015. This paper presents outcomes for the first cohort of participants (n = 36) of a Screening for Psychosocial Distress Program (SPDP), a 2-year training program designed to assist clinicians in implementing routine distress screening as mandated by the American College of Surgeons Commission on Cancer. Specifically, participants’ success with distress screening implementation, institutional barriers and facilitators to implementation, and the role of the SPDP are described.

This research followed a longitudinal pre- and posttest mixed methods design. An investigator-developed questionnaire collected qualitative (distress screening goals, institutional barriers and facilitators, facilitators associated with participation in the SPDP) and quantitative (level of goal achievement) data at 6, 12, and 24 months of participation in the SPDP. Conventional content analysis was applied to qualitative data. Mixed methods data analysis in Dedoose evaluated (1) types and number of distress screening goals, barriers, and facilitators, and (2) goal achievement at 6, 12, and 24 months of participation.

Ninety-five percent of distress screening implementation goals were completed after 2 years of participation. Most common institutional barriers to distress screening implementation were “lack of staff,” “competing demands,” and “staff turn-over.” Most common institutional facilitators were “buy-in,” “institutional support,” and “recognition of participants’ expertise.” The number of reported facilitators associated with SPDP participation was higher than the number associated with any institutional factor, and increased over time of participation.

Participating in training programs to implement distress screening may facilitate successful achievement of the Commission on Cancer's distress screening standard, and benefits seem to increase with time of participation. Training programs are needed to promote facilitators and overcome barriers to distress screening.

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.

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.