There is scarce research on the short-term fluctuations in end-of-life (EoL) care planning for seriously ill patients. The aim of our study was to investigate the stability of preferences regarding treatment in an intensive care unit (ICU) and identify the factors associated with changes in preferences in terms of quality of life (QoL).

A prospective examination on preference changes for ICU care in 141 terminal cancer patients was conducted. Patients were categorized according to their change in preference during the final two months of their lives into four categories: (1) the keep–accept group, (2) the keep–reject group, (3) the change to accept group, and (4) the change to reject group. Using multiple logistic analyses, we explored the association between patient demographics, health-related QoL, and changes in ICU preference.

The overall stability of ICU preferences near the end of life was 66.7% (κ = 0.33, p < 0.001). Married patients were more likely to change their preference regarding ICU care [adjusted odds ratio (aOR) toward accept 12.35, p = 0.021; aOR toward reject 10.56, p = 0.020] than unmarried patients. Patients with stable physical function tended to accept ICU care (aOR = 5.05, p = 0.023), whereas those with poor performance (aOR = 5.32, p = 0.018), worsened QoL (aOR = 8.34, p = 0.007), or non-aggravated fatigue (aOR = 8.36, p = 0.006) were more likely to not accept ICU care.

The attitudes of terminally ill cancer patients regarding ICU care at the end of life were not stable over time, and changes in their QoL were associated with a tendency to change their preferences about ICU care. Attention should thus be paid to patients' QoL changes to improve medical decision making with regard to EoL care.

Research on women's experiences of cervical cancer as a health problem focuses primarily on cervical screening, while their experiences of cervical cancer as a disease seem to be underresearched. This study addresses this understudied area and aims to yield insight into the experiences of underprivileged women confronted with this disease.

Our study was qualitative, exploratory, and contextual with descriptive and interpretive elements. The context of the study was a radiation oncology department at an academic hospital in the Gauteng Province of South Africa. The target population was all patients diagnosed with cervical cancer referred for treatment at the specific hospital. Convenience sampling selected participants typical of the population. Nineteen open-ended unstructured interviews were conducted after demographic data were collected. One question was posed: “Please tell me what made you think there was something wrong with you?” Thematic analyses were used to analyze the data.

The average age of participants was 47.2 years, with a youngest participant of 29 and oldest of 70. Three themes arose from the data: experiencing the symptoms of cervical cancer, hearing the bad news, and what remained unsaid.

Being confronted with cervical cancer is a traumatic experience. Women suffer unexplained, severe, humiliating vaginal bleeding and unrelieved pain. They have to face a dual healthcare system: on the one hand, unaffordable effective private healthcare and, on the other, the free-of-cost public healthcare that failed them. The bad news of their cervical cancer is most commonly broken in a kind and sympathetic manner, yet misunderstandings and a need for additional information prevail after the bad news conversation. Having to inform their families of their cancer adds to their suffering.

Advance care planning (ACP) discussions are emphasized as a valuable way of improving communication about end-of-life care. Yet we have very little knowledge of what goes on during actual ACP discussions. The aim of our study was to explore how the sensitive topics of end-of-life decisions are addressed in concrete ACP discussions, with special focus on doctor–patient interactions.

Following a discourse-analysis approach, the study uses the concept of doctor and patient “voices” to analyze 10 directly observed and audiotaped ACP discussions among patients, relatives, and a physician, carried out in connection with a pilot study conducted in Denmark.

Previous studies of directly observed patient–physician discussions about end-of-life care show largely ineffective communication, where end-of-life issues are toned down by healthcare professionals, who also tend to dominate the discussions. In contrast, the observed ACP discussions in our study were successful in terms of addressing such sensitive issues as resuscitation and life-prolonging treatment. Our analysis shows that patients and relatives were encouraged to take the stage, to reflect, and to make informed choices. Patients actively explored different topics and asked questions about their current situation, but some also challenged the concept of ACP, especially the thought of being able to take control of end-of-life issues in advance.

Our analysis indicates that during discussions about sensitive end-of-life issues the healthcare professional will be able to pose and explore sensitive ACP questions in a straightforward manner, if the voices that express empathy and seek to empower the patient in different ways are emphasized.

This study examined the prevalence of clinically significant anxiety among informal hospice caregivers and identified the characteristics of caregivers who experienced anxiety of this severity.

An exploratory secondary data analysis pooled from three separate studies of informal hospice caregivers (N = 433) was conducted. Researchers employed descriptive statistics to calculate anxiety prevalence and utilized logistic regression to model the associations between the covariates (i.e., caregiver characteristics) and anxiety.

Overall, 31% of informal hospice caregivers reported moderate or higher levels of anxiety. Caregivers associated with the research site in the Northwest were less likely to be anxious than those in the Southeast [χ2(3, N = 433) = 7.07, p = 0.029], and employed caregivers were less likely to be anxious than unemployed caregivers (OR = 0.56, 95% CI = 0.33, 0.96). The likelihood of being anxious decreased with increasing physical quality of life (OR = 0.77, 95% CI = 0.69, 0.85), and younger female caregivers were more likely to be anxious than male caregivers and older females (OR = 0.95, CI = 0.91, 0.99).

A noteworthy number of informal hospice caregivers experience clinically significant levels of anxiety. Increased efforts to screen and address anxiety in this population are recommended.

People from ethnic minority groups who receive cancer care outside their country of origin may experience poor survival and psychological outcomes relative to that nation's majority groups. This exploratory qualitative study aimed to understand the experience of a large minority group of Mandarin-speaking cancer patients (MSCPs) after diagnosis and treatment of their cancer in Australia, with a view to delineate if cultural or linguistic factors affected the quality of care provided.

We employed an exploratory qualitative design involving interviews with 22 MSCPs who were treated during 2009 at the Peter MacCallum Cancer Centre (PMCC) in Melbourne, Australia. Participants were interviewed by a bilingual psychiatrist, audiotaped, transcribed in Mandarin, and then translated into English before being subjected to thematic analysis by two independent researchers.

MSCPs experienced notable challenges as a result of both language difficulties and differing cultural approaches, which often limited their understanding of their disease and impeded their ability to access quality care and adequate support. The results call for Australia and other Western nations with increasingly diverse populations to consider how cancer care can be modified to better support people from minority groups to effectively cope with their diagnosis and treatment.

This study raises several suggestions for service improvement, including the development of bilingual communication aids, improved educational opportunities for clinical staff to aid their mastery of cultural issues and effective interpreter consultations, and improved access to supportive services offering culturally specific strategies.

Although “fatigue” and “depression” are well-accepted clinical terms in the English language, they are ill defined in many other languages, including Portuguese. We aimed to investigate the most appropriate words to describe cancer-related fatigue (CRF) and depression in Brazilian cancer patients.

The interviewers read to patients two clinical vignettes describing fatigued patients and two others describing depressed patients. Participants were asked to choose from among “fatigue,” “tiredness,” “weakness,” “depression,” and “sadness” the best and worst terms to explain the vignettes. In addition, they were administered an instrument containing numeric rating scales (NRSs), addressing common symptoms, including the aforementioned terms. Pearson correlation analysis and accuracy diagnostic tests were conducted using the Hospital Anxiety and Depression Scale (HADS) and the Functional Assessment of Cancer Treatment–Fatigue (FACIT–F) as references.

Among the 80 participants, 40% reported that the best term to explain the concept of CRF was “tiredness,” and 59% chose “sadness” as the best descriptor of depression. Regarding diagnostic accuracy, the areas under the curve (AUCs) for “fatigue,” “weakness,” and “tiredness” were 0.71, 0.81, and 0.76, respectively; the AUCs for “depression” and “sadness” ranged from 0.81 to 0.91 and 0.73 to 0.83, respectively. Negative correlations were found among FACIT–F fatigue subscale scores and NRS scores for “fatigue” (r = –0.58), “tiredness” (r = –0.67), and “weakness” (r = –0.62). Regarding depression, there were positive correlations between HADS–D scores and both NRS for “depression” (r = 0.61) and “sadness” (r = 0.54).

“Tiredness” was considered the best descriptor of CRF. Taking into consideration the clinical correlation with depression scores, the term “depression” was accepted as the best term to explain the concept of depression.

The purpose of this study was to assess the factors that predict the effectiveness of palliative care in patients with advanced cancer.

Cross-sectional data were collected from 240 patients recruited from three tertiary care hospitals in Bangkok and suburban Thailand aged 18 years or older who were willing to participate; able to speak, read, and write Thai; were not receiving aggressive cancer treatment; and had been diagnosed with advanced-stage cancer. Participants were asked to complete a Personal Information Questionnaire (PIQ), a Palliative Care Assessment Form (PCAF), and the Spiritual Well-Being Scale (SWBS).

The significant predictors of the effectiveness of palliative care in patients with advanced cancer were found to be spiritual well-being (p = 0.000) and palliative care strategies: a combination of pharmacological and psychosocial care, mind–body intervention, and spiritual care; physical management; and traditional medicine, herbal treatment, and diet management (p = 0.027). The likelihood of effectiveness for patients whose spiritual well-being and palliative care strategies scores increased by an average of one point increased by factors of 1.058 and 2.271, respectively.

These findings suggest that patients who experienced better spiritual well-being and who employed a variety of palliative care strategies also experienced enhanced effectiveness of palliative care.

We investigated the prevalence of sleep disturbance and psychological distress in lung cancer patients. We also examined the association between sleep disturbance and psychological distress, pain, fatigue, and quality of life in the same population.

Fifty lung cancer patients were evaluated. Sleep disturbance was assessed using the Athens Sleep Insomnia Scale (AIS) and psychological distress using the Hospital Anxiety and Depression Scale (HADS). Quality of life (QOL), pain, and fatigue were assessed employing the European Organization of Research and Treatment Quality of Life Questionnaire–Cancer 30 (EORTC QLQ–C30).

We observed that 56% of lung cancer patients had sleep disturbance (AIS score ≥6) and 60% had psychological distress (total HADS score ≥11). Patients with sleep disturbance had a HADS score of 14.6 ± 5.8, a fatigue score of 45.3 ± 22.0, and a pain score of 27.2 ± 26.2. In contrast, patients without sleep disturbance had a lower HADS score of 9.9 ± 8.1 (p < 0.05) and a higher fatigue score of 28.5 ± 18.0 (p < 0.01) and a pain score of 8.7 ± 15.8 (p < 0.01). In addition, we found a lower QOL in patients with sleep disturbance (46.3 ± 20.2) than in those without (65.2 ± 20.7) (p < 0.05). We also observed a significant correlation between the AIS, HADS, fatigue, QOL, and pain scores.

Lung cancer patients suffered from combined symptoms related to sleep. Sleeping pills improved sleep induction but were not sufficient to provide sleep quality and prevent daytime dysfunction. Daytime dysfunction was specifically associated with psychological distress. Additionally, the type of sleep disturbance was related to other patient factors, including whether or not they received chemotherapy.

This study aimed to describe knowledge of an advance directive (AD) and preferences regarding end-of-life (EoL) care communication, decision making, and designation of surrogates in Chinese-American elders and to examine the role of acculturation variables in AD awareness.

Survey data were collected through face-to-face interviews on a sample of 385 Chinese-American elders aged 55 or above living in the Phoenix metropolitan area. The choice of language (Mandarin, Cantonese, or English) and place of interview (senior apartments, Chinese senior centers, or homes) was at the respondent's preference. Hierarchical logistic regression analysis was employed to examine the influence of acculturation variables on AD awareness.

Some 21% of participants had heard about ADs, and only 10% had completed one. Elders with higher acculturation levels (OR = 1.04, p < 0.10) and those residing more than 20 years in the United States (OR = 6.87, p < 0.01) were more likely to be aware of ADs after controlling for the effects of demographics, health, and experiences of EoL care. The majority preferred physicians to initiate AD discussions (84.9%) and identified burdens on families as the most important factor in making EoL decisions (89.3%). About 55.1 % considered daughters as the preferred healthcare surrogate.

Acculturation levels influence awareness of an AD, and family values are crucial in EoL care decision making. Cultural factors should be considered in designing and delivering appropriate programs to promote knowledge of EoL care among Chinese-American elders and their families.

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

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

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

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

Despite the rapidly growing availability of palliative care services, there is still much to be done in order to better support clinicians who are starting research programs. Among the barriers identified in the literature, methodological issues and lack of research training programs are often reported. Our aim was to describe an educational research method for healthcare professionals working in palliative care and to report the result of a survey conducted among a three-year sample of students.

The course was provided for a multidisciplinary group and was open to all healthcare professionals involved in palliative care. It took place over a single session during a full day. We used a 20-question e-survey to assess student outcomes (e.g., satisfaction, current status of their project).

We received answers from 83 of the 119 students (70%) who took the course. The majority were physicians (n = 62, 75%), followed by nurses (n = 17, 21%). During the class, students assessed the role of the teacher as an information provider (n = 51, 61%), role model (n = 36, 43%), and facilitator (n = 33, 40%), and considered all of these roles as suitable, with a score of 3.9–4.7 out of 5. Participants reported a high level of support from the teacher, with a mean score of 8.2 (SD, 1.7) out of 10, and good overall satisfaction with a mean score of 7.6 (1.8). Finally, 51 participants (77%) were able to start their research project after the class, 27 (41%) to complete it, and 8 (12%) to submit their research to a journal or conference.

Our results suggest that newer teaching methods such as roleplay, group work, and target acquisition are feasible and effective in a palliative research curriculum. Additional studies are needed to confirm the objective outputs of educational interventions, including research outputs.

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.

Considering two advanced illnesses, cancer and end-stage dementia, the aim of this study was to describe the symptoms of caregiver psychological distress and burden.

In this cross-sectional study, regression analyses were calculated to explain the influence of psychological distress in caregiver burden. A t test was employed to compare differences between the symptoms of caregiver burden.

The percentage of psychological distress was similar between caregivers of cancer patients (77.6%) and caregivers of dementia patients (72.4%). In the regression analysis, cancer caregiver distress accounted for 27.9% of the variance in symptoms of burden, while dementia caregiver distress accounted for 24.4% of the variance in symptoms of burden. No significant differences were revealed when comparing caregiver burden symptoms between caregivers of the two advanced illnesses (t = 0.06; p = 0.94).

In end-of-life care for patients with dementia, due to significant levels of caregiver distress and burden symptoms, there is a need to support caregivers in the same way as is done for caregivers of cancer patients.

The recently validated Cornell Assessment for Pediatric Delirium (CAPD) is a new rapid bedside nursing screen for delirium in hospitalized children of all ages. The present manuscript provides a “developmental anchor points” reference chart, which helps ground clinicians' assessment of CAPD symptom domains in a developmental understanding of the presentation of delirium.

During the development of this CAPD screening tool, it became clear that clinicians need specific guidance and training to help them draw on their expertise in child development and pediatrics to improve the interpretative reliability of the tool and its accuracy in diagnosing delirium. The developmental anchor points chart was formulated and reviewed by a multidisciplinary panel of experts to evaluate content validity and include consideration of sick behaviors within a hospital setting.

The CAPD developmental anchor points for the key ages of newborn, 4 weeks, 6 weeks, 8 weeks, 28 weeks, 1 year, and 2 years served as the basis for training bedside nurses in scoring the CAPD for the validation trial and as a multifaceted bedside reference chart to be implemented within a clinical setting. In the current paper, we discuss the lessons learned during implementation, with particular emphasis on the importance of collaboration with the bedside nurse, the challenges of establishing a developmental baseline, and further questions about delirium diagnosis in children.

The CAPD with developmental anchor points provides a validated, structured, and developmentally informed approach to screening and assessment of delirium in children. With minimal training on the use of the tool, bedside nurses and other pediatric practitioners can reliably identify children at risk for delirium.

Consistent use of imatinib is critical for treatment success in chronic myeloid leukemia, yet perfect adherence to the prescribed clinical regimen is reported to be as low as 14%. This study aimed to understand patients' experiences of chronic myeloid leukemia with a qualitative approach, including identified facilitators and barriers to adherence, drawing on patients' and health professionals' perspectives, recording comments made by patients and health professionals involved with the same treatment team.

We recruited patients with chronic myeloid leukemia prescribed imatinib therapy and health professionals involved in their treatment from a specialized cancer center. Semi-structured qualitative interviews were recorded, transcribed, and manually analyzed using interpretive phenomenological analysis. Recruitment ceased upon saturation, with 16 patients and 10 health professionals (hematologists n = 4, nurses n = 3, pharmacists n = 3).

Twelve patients reported at least one instance of nonadherence. Reasons for unintentional nonadherence included forgetfulness related to variations of routine and doctor–patient communication issues. Reasons for intentional nonadherence included desires to reduce dose-dependent side effects and insufficient support. Patients who reported higher nonadherence rates felt complacent following periods of sustained disease control or had received conflicting advice regarding nonadherence. Health professionals had difficulty in accurately evaluating medication adherence due to a lack of reliable measures, utilizing patient self-report and manifestations of suboptimal disease control to guide assessments.

Adherence issues persist throughout the course of treatment. While high patient-reported nonadherence rates were recorded, health professionals were often unaware of the complex causes, compounded by an inadequacy of adherence assessment tools. Some patients reported nonadherence events because of insufficient education or lack of access to prompt medical guidance. These issues should be addressed to improve clinical practice.

An important goal of cancer medicine is relief of patients' suffering. In view of the clinical challenges of identifying suffering patients, we sought to identify valid instruments for assessing the spiritual suffering of people diagnosed with cancer.

A systematic review of the literature was conducted in the Medline, Embase, the Cochrane Library, and PsycINFO databases seeking assessment instruments that measure either suffering or one of its synonyms or symptoms. The psychometric properties of the identified measures were compared.

A total of 90 articles were identified that supplied information about 58 measures. The constructs examined were: suffering, hopelessness/demoralization, hope, meaning, spiritual well-being, quality of life where a spiritual/existential dimension was included, distress in the palliative care setting and pain, distress or struggle of a spiritual nature. The Pictorial Representation of Illness and Self Measure (PRISM) (patient completed) was the most promising measure identified for measuring the burden of suffering caused by illness due to its ease of use and the inclusion of a subjective component.

Although the appropriateness of any measure for the assessment of spiritual suffering in cancer patients will depend on the context in which it is intended to be utilized, the PRISM is promising for measuring the burden of suffering due to illness.

This review of the research literature explored the supportive care needs of cancer patients of varying ages and genders at varying stages of cancer treatment.

We conducted a search of online databases of peer-reviewed studies published in the English language between 2009 and 2014.

This paper reviews research studies that explored the supportive care needs of cancer patients through focus groups, surveys, and interviews. The samples addressed varied in age, ethnicity, and gender.

One major need identified was the requirement of informational support. Other essential needs included emotional, spiritual, and financial support. Supportive care can be administered in various ways—for example, by religious communities or caregivers as well as providers. However, healthcare providers must recognize the supportive care needs of their patients and incorporate effective resources and interventions into treatment plans.

Many people now die in community care, and, considering the aging population, all healthcare staff members must be prepared to provide palliative care. Our objectives were to describe the total staff working in different care organizations in a rural community in Sweden and to explore palliative care competence, to describe educational gaps and the need for support and reflection, and to determine whether there are differences in care organizations, professions, age, and gender.

A 4-section 20-item questionnaire was distributed to 1686 staff (65% response rate): in nursing homes (n = 395), home care (n = 240), and group residential settings (n = 365). Registered nurses (n = 70), assistant nurses (n = 916), managers (n = 43), and paramedics (n = 33) participated. Descriptive and correlational statistics were employed.

Significant differences were found, and 40% (53% among men) lacked palliative care education, Fewer than 50% lacked education in the spiritual/existential areas, and 75% of those aged 20–66 (75% women, 55% men) needed further education. More women than men and staff aged 50–59 had an increased need to reflect.

Our study may provide guidance for managers in rural communities when planning educational interventions in palliative care for healthcare staff and may support direct education with content for specific professions.

Several factors associated with referral time to hospice and/or palliative care services have been identified, but there is no literature on the association between these services and the emotional status of the family caregivers (FCs). This article is intended to address that issue.

A semistructured interview was employed to collect data for a retrospective cohort study. The primary FCs of terminally ill cancer patients were interviewed at the time of the patient's referral to the palliative care unit. Interview data were combined with patients' medical record data for our analysis. The emotional status of the FCs was categorized into one of three groups according to their responses to the anticipated death of their family member: acceptance, anxious/depressed, and denial/angry. A Cox proportional hazard model was used to examine and identify the factors related to the length of stay (LOS) in the palliative care unit.

A total of 198 patient–FC pairs were identified. The median LOS was 18 days. A multivariate analysis with adjustment for potential variables revealed significant differences in LOS according to cancer type and time since cancer diagnosis. The denial/angry FC category was independently associated with a shorter LOS (vs. acceptance, adjusted hazard ratio (aHR) 2.11; 95% confidence interval (CI), 1.11–4.03).

We found that terminally ill cancer patients who were referred late had FCs who were in denial or were angry about the anticipated death of their loved one. The emotional status of FCs should be considered when patients with terminal cancer are referred to palliative care.