Palliative sedation is a last resort medical act aimed at relieving intolerable suffering induced by intractable symptoms in patients at the end-of-life. This act is generally accepted as being medically indicated under certain circumstances. A controversy remains in the literature as to its ethical validity. There is a certain vagueness in the literature regarding the legitimacy of palliative sedation in cases of non-physical refractory symptoms, especially “existential suffering.” This pilot study aims to measure the influence of two independent variables (short/long prognosis and physical/existential suffering) on the physicians' attitudes toward palliative sedation (dependent variable).

We used a 2 × 2 experimental design as described by Blondeau et al. Four clinical vignettes were developed (vignette 1: short prognosis/existential suffering; vignette 2: long prognosis/existential suffering; vignette 3: short prognosis/physical suffering; vignette 4: long prognosis/physical suffering). Each vignette presented a terminally ill patient with a summary description of his physical and psychological condition, medication, and family situation. The respondents' attitude towards sedation was assessed with a six-point Likert scale. A total of 240 vignettes were sent to selected Swiss physicians.

74 vignettes were completed (36%). The means scores for attitudes were 2.62 ± 2.06 (v1), 1.88 ± 1.54 (v2), 4.54 ± 1.67 (v3), and 4.75 ± 1.71 (v4). General linear model analyses indicated that only the type of suffering had a significant impact on the attitude towards sedation (F = 33.92, df = 1, p = 0.000).

The French Swiss physicians' attitude toward palliative sedation is more favorable in case of physical suffering than in existential suffering. These results are in line with those found in the study of Blondeau et al. with Canadian physicians and will be discussed in light of the arguments given by physicians to explain their decisions.

This study examines the ability of the distress thermometer to accurately identify patients with higher symptoms, unmet needs and psychological morbidity.

Baseline data collected as part of a randomized controlled trial evaluating a nurse-led supportive care intervention for men with prostate cancer commencing radiotherapy at a specialist cancer hospital in Melbourne, Australia. Measures assessed global distress (DT), anxious and depressive symptomatology (HADS), prostate-cancer specific quality of life (EPIC-26), unmet supportive care needs (SCNS-SF34R) and cancer treatment-related concerns (CATS). Following descriptive and correlational analysis, hierarchical multiple regression was employed to examine the contribution of variable sets to explaining variance in DT scores.

Less than 20% of men reported DT scores of 4 or higher, indicating overall low distress. The DT accurately identified almost all men reporting HADS score indicative of anxious or depressive symptomatology, suggesting it accurately identifies psychological morbidity. Importantly, the DT identified a further group of distressed men, not identified by HADS, whose distress related to unmet needs and prostate cancer-specific issues, indicating the DT is superior in identifying other forms of distress. While the hierarchical multiple regression confirmed anxious and depressive symptomatology as the best predictor of distress score, many other scales are also good predictors of DT scores, supporting the argument that distress is multi-determined.

Nurses can be confident that the DT accurately identifies patients with psychological morbidity and importantly identifies other patients with distress who may require intervention. A distress score of 4 or higher identified participants with higher physical symptomatology, higher unmet needs, more concerns about treatment and poorer quality of life. The low prevalence of distress reaching cut off scores suggests nurses would not be overwhelmed by the outcomes of screening and could use the score to prioritise the patients who need greater attention at entry to radiotherapy services.

To deepen the understanding of the variation of complexity in family members' caregiving situations, when the private home is the place for care, dying, and sitting service.

Seven relatives to a deceased family member from four different families were interviewed twice. Data were analyzed by direct interpretation and categorical aggregation

Various patterns of becoming a caregiver were showed, but family members' willingness to become family caregivers was strongly related to fulfilling the dying persons' wishes to be cared for in their own homes. Important factors for coping with the caregiving situation were their needs of support, the possibility to prepare for death related to a need of communication and planning, the length and predictability of the illness trajectory, and experiences of losses and grief. Sitting service was experienced as supportive for family caregivers when they had possibility to hand over care responsibilities, but as non-supportive when expected help not was received.

Family members' experiences of caregiving and their degree of vulnerability must be different, depending on whether it is a self-selected position or an imposed task. In general, family members in this study were willing to participate in caregiving for end-of life care, but subject to their own conditions. One way to decrease vulnerability is to assess the resources and competence in relation to the responsibility the person is expected to assume. The support and other efforts to help family caregivers must be related to their specific needs and reality, not only to what the care organization can offer as a standard solution.

The purpose of this qualitative study was to investigate how frontline healthcare professionals witness and understand disparity in cancer care.

Six healthcare providers from a range of care settings, none with < 15 years of frontline experience, engaged with researchers in an iterative process of identifying and reflecting on equity and disparity in cancer care. This knowledge exchange began with formal interviews. Thematic analysis of the interviews form the basis of this article.

Participants drew attention to health systems issues, the meaning and experience of discontinuities in care for patients at personal and community levels, and the significance of social supports. Other concerns raised by participants were typical of the literature on healthcare disparities.

Providers at the front lines of care offer a rich source of insight into the operation of disparities, pointing to mechanisms rarely identified in traditional quantitative studies. They are also well positioned to advocate for more equitable care at the local level.

Evidenced-based psychotherapies are not well researched for palliative care patients experiencing unrelenting anxiety about dying, even less research is focused on young adult palliative care patients with death anxiety. The aim of this study is to provide preliminary data regarding potential clients' perceptions of using evidenced based treatments with dying populations who are experiencing death anxiety.

104 college students were used as potential clients and randomly assigned to watch either a short video of a cognitive therapy (CT) session or of an acceptance and commitment therapy (ACT) session focused on treating a young adult diagnosed with an acute lymphoid leukemia expressing death anxiety. After watching the video, potential clients rated the session impact of the therapy approach using the Session Evaluation Questionnaire.

No differences in ratings of session impact were found between potential clients who viewed the CT session and the ACT session. In regards to potential clients' views of session impact variables, their view of session smoothness was positively related to their post-session positivity, but inversely related to their view of session depth. Additionally, a positive correlation was found between potential clients' views of the therapist and session depth.

This preliminary study suggests that palliative care patients expressing death anxiety may benefit from either ACT or CT for death anxiety, however, future research is needed to explore the usefulness of each approach. Findings of this study support the theory that ACT and CT are viewed to have a similar session impact in the palliative care population.

Physical and psychological symptoms in cancer patients are frequently overlooked by medical staff. However, little is known regarding the potential impacts of concurrent physical and psychological symptoms on the overlooking of other symptoms. The aim of this study was to examine the impact of concurrent symptoms on the overlooking of other symptoms in cancer inpatients.

A total of 255 cancer inpatients in the general wards of one university hospital, who were referred to the palliative care team, were included. On the day of referral, nurses and patients were independently assessed for the presence of the following eight symptoms: pain, fatigue, nausea and vomiting, shortness of breath, lack of appetite, dry mouth, sleep problems, and distressed feelings. The presence of delirium was also separately assessed by nurses and psychiatrists on the team. A total of nine symptoms detected by nurses and those reported by patients or psychiatrists were compared, and logistic regression analysis was performed to identify the variables associated with the overlooking of these symptoms.

The most frequently reported symptom was pain (76.5%), followed by distressed feelings (49.8%), sleep problems (34.1%), and delirium (25.1%). The proportion of those overlooked was more than one quarter (25.0–63.6%) for all symptoms except pain (12.8%). Significant associations were found between the overlooking of shortness of breath and concurrent delirium (odds ratio [OR] = 110.9); the overlooking of sleep problems and concurrent lack of appetite (OR = 9.1); and the overlooking of distressed feelings and concurrent dry mouth (OR = 27.7). No patient demographic characteristic was associated with the overlooking of any other symptoms.

The presence of some specific concurrent symptoms is likely to lead to the overlooking of other symptoms in cancer inpatients by nurses. Comprehensive assessments of physical and psychological symptoms in daily clinical practice are needed.

Age-based screening tools and assessment measures are crucial to the provision of best practice care for adolescent and young adult (AYA) cancer patients. Unfortunately, there are limited psychosocial tools developed for this age group and pediatric or adult measures are often distributed with the assumption that they are “close enough.” We describe a collaborative Australian project that strives to improve what currently exists for the psychosocial assessment of and planning for the 15–25-year-old age group.

Using the National Comprehensive Cancer Network's Distress Thermometer and the HEADSS Assessment as a foundation, the tools were developed in consultation with Australia's leading AYA clinicians, AYAs currently undergoing medical treatment, and a group of AYA survivors through a process of discussion groups and clinical interviews.

The result is the first available AYA-specific screening tool, care plan pro forma, and psychosocial assessment measure developed for use within the oncology sector. These new tools will assist clinicians working with this population group to support psychosocial coping during active treatment and promote healthy post-treatment survivorship.

Over time, further validation procedures will add to the veracity of the measures. Until then, these measures represent the best available in Australia. They highlight a clinically recognized minimum standard of care that all young cancer patients, regardless of treatment location, have the right to receive.

Cancer patients and family members can feel abandoned by their oncologist at the transition to end-of-life (eoL) care. In this study, we evaluated the level of satisfaction of family caregivers when the oncology team assisted the patient until death.

Two oncology units were reorganized to ensure continuity of care; oncologists trained in palliative care medicine assisted patients until death. Relatives who assisted the patient at home or at an inpatient hospice underwent a semi-structured phone interview >1 month after the patient's death. Satisfaction was measured using a five-point Likert scale ranging from very dissatisfied (score 0) to very satisfied (score 100).

Relatives of 65 patients were contacted, 55 accepted the interview. Patients were followed at home (41) or at an inpatient hospice (14), for 1–24 weeks (median 3 weeks). A specific question on the relevance of the oncologist having a role in EoL care produced a score of 82. The overall satisfaction score was higher than in our previous study in which a continuity of care model was not adopted, with a score improvement from 55/100 to 84/100 (p < 0.001).

A care program where the oncologist is involved in EoL management improved the satisfaction of caregivers of cancer patients. When a longstanding and trusting relationship has been established, the connection between the patient and the oncologist should not be lost.

Cancer-related distress has been endorsed as the sixth vital sign by many international cancer organizations, and some countries such as Canada have implemented national screening for distress programs. The completion of a screening tool is an important first step in improving responsiveness to cancer-related distress, but screening must be followed with skilled supportive care to make a difference in patient-reported outcomes. Our objective was to create a web-based education program to support nurses and other frontline staff in providing an initial response to screening results.

To address screening and supportive care learning needs, the Canadian Association of Psychosocial Oncology (CAPO), with support from the Canadian Partnership Against Cancer, created a web-based education program as one component of the national screening for distress agenda. The program provides clinically grounded and interactive learning through the use of PowerPoint presentations, video clips of clinical interactions with patients and family members, and test questions. Presentation topics include, for example, strategies for dealing with screening results, managing referrals, and supportive counseling. We employed a matched pairs, pre-post survey design to assess the effect of the education program on confidence in screening and in providing initial supportive care.

Our analysis of the first 147 matched pairs to complete the course suggests that satisfaction with the course was high. Statistically significant increases in confidence in relation to screening for distress and assessing distress, and in providing initial supportive care, were evident.

Our ongoing experience with CAPO's Interprofessional Psychosocial Oncology Distance Education (IPODE) project (www.ipode.ca) project suggests that healthcare professionals value web-based learning for its accessibility and convenience. Such programs appear to offer excellent opportunities for cost-effective education that supports practice change.

Caring for a dying family member is known to interfere with sleep, yet little is known about caregiver sleep once the patient is admitted to hospice. The aim of this pilot study was to describe the sleep of partners and other family caregivers of patients in hospice.

The pilot study used a cross-sectional, descriptive, and comparative design. Participants included the primary family caregivers of patients recently admitted to a hospice in Norway. Caregiver sleep during the prior month was measured with the Pittsburgh Sleep Quality Index (PSQI). During the patient's hospice stay, caregiver sleep was measured using wrist actigraphy for four nights and three days.

Twenty family caregivers (12 partners and 8 other relatives) completed the study protocol without difficulty. On the PSQI, most caregivers (n = 13) reported clinically significant sleep problems during the prior month. Once the patient was admitted to hospice, actigraphy indicated that 10 caregivers had clinically significant sleep disruption (≥15% wake after sleep onset) and six averaged <7 hours of sleep per night. Partner caregivers reported more trouble falling asleep, and less sleep medication use, in the prior month than other types of family caregivers. However, once the patient was admitted to hospice, and after adjusting for caregiver age, partner caregivers experienced less sleep disruption than other caregivers.

Findings demonstrate feasibility of the study protocol and indicate that sleep problems are common for caregivers of dying patients, even after the patient is admitted to hospice. The caregiver's relationship to the patient may be an important factor to consider in future studies.

Survivors of hematopoietic stem cell transplant (HSCT) have experienced a life threatening and potentially traumatic illness and treatment that make them vulnerable to long lasting negative psychological outcomes, including anxiety and depression. Nevertheless, studies show that overcoming cancer and its treatment can present an opportunity for personal growth and psychological health (reduced symptoms of anxiety and depression and high levels of emotional well-being) through resilience. However, research has not yet clarified what differentiates HSCT survivors who experience psychological growth from those who do not. By analyzing recovery narratives, we examined whether HSCT survivors’ interpretation of their experiences helps explain differences in their post-treatment psychological health.

Guided by narrative psychology theory, we analyzed the narratives of 23 HSCT survivors writing about their experience of cancer treatment. Psychological health was measured by: (1) emotional well-being subscale part of the Functional Assessment of Cancer Therapy Bone Marrow Transplant (FACT-BMT), (2) depression, and (3) anxiety subscales of the Brief Symptom Inventory.

Findings revealed a positive relation between psychological health and a greater number of redemption episodes (going from an emotionally negative life event to an emotionally positive one) as well as fewer negative emotional expressions.

Theoretical and practical implications of these findings are discussed, showing how narratives can inform interventions to assist cancer survivors with their psychological recovery.

As the aging population faces complex end-of-life issues, we studied the intervals between long-term care admission and advance directive completion, and between completion and death. We also sought to determine the interdisciplinary team's compliance with documented wishes.

A cross-sectional study of 182 long-term care residents in two facilities with and without completed medical orders for life-sustaining treatment (MOLST) in the New York Metropolitan area was conducted. Demographic variables included: gender, age, ethnicity, and diagnosis. Measures included: admission date, MOLST execution date, and date of death. Resident advance directive documentation was compared with clinical intervention at time of death, including intubation and mechanical ventilation.

Of the residents studied, 68.7% were female, 91% were Caucasian and 91.8% were ≥ 65 years of age (mean age: 83). The median time from admission to MOLST signing was 48 days. Median time from admission to MOLST signing for Caucasians was 21 days; for non-Caucasians was 229 days. Fifty-two percent of MOLST were signed by children, and 24% by residents. Of those with signed forms, 25% signed on day of admission, 37% signed within 7 days, and 47% signed within 21 days. Only 3% of residents died the day their MOLST was signed, whereas 12% died within a week, and 22% died within 30 days. Finally, among the 68 subjects who signed a MOLST and died, 87% had their wishes met.

In this era of growing time constraints and increased regulations, medical directors of long-term care facilities and those team members caring for residents urgently need a clear and simple approach to the goals of care for their residents. The MOLST is an ideal tool in caring for older adults at the end of life, providing concrete guidance, not only with regard to do not resuscitate (DNR) and do not intubate (DNI) orders, but also for practical approaches to daily care for the interdisciplinary team.

Relatively little attention has been paid to optimum ways in which community-based care services can support family caregivers in the context of end-of-life care at home. This paper addresses such concerns by focusing on the services provided by domiciliary care workers.

We draw on qualitative formal interviews with 42 family members, 1 patient, and 6 staff, as well as observation sessions and informal interviews with additional family caregivers and staff, to examine the aspects of domiciliary care perceived to be of most value. In particular, we compare and contrast family caregivers' experience of the support provided by generic domiciliary care workers with that of a team of specialist domiciliary care workers.

Our findings show that specialist domiciliary care workers had sufficient time and expertise to meet family caregivers' physical and emotional needs in sensitive, proactive, and family-centered ways, and that these attributes were not so prominent in the services received from generic domiciliary care workers.

The availability to families of targeted support from an appropriately trained and carefully monitored team of specialist domiciliary care workers, able to operate flexibly and with staff consistency, appears to be an important foundation on which to build greater confidence in the reality of a good death at home.

Self-monitoring behaviors of cancer patients benefit patients, caregivers, and providers, and yet the phenomenon of self-monitoring from the cancer-patient perspective has not been studied. We examined cancer patients' self-monitoring preferences and practices, focusing on the meaning of self-monitoring within the cancer experience.

Semi-structured interviews were conducted among adult cancer patients who had been seen at least once at a rural United States cancer center. Questions sought out the meaning of self-monitoring and its practical aspects. Qualitative data were analyzed by adapting the four-stepped method by Giorgi for empirical phenomenological analysis.

Twenty participants were interviewed (11 women and 9 men). Transcribed interviews revealed that cancer patient self-monitoring is self-stylized work that ranges from simple to complex, while being both idiosyncratic and routine. Participants reported using tools with systems for use that fit their distinctive lives for the purpose of understanding and using information they deemed to be important in their cancer care. Three conceptual categories were discerned from the data that help to elucidate this self-stylized work as fitting their individual priorities and preferences, reflecting their identities, and being born of their work lives.

Findings highlight patients' unique self-monitoring preferences and practices, calling into question the assumption that the sole use of standardized tools are the most effective approach to engaging patients in this practice. Self-monitoring efforts can be validated when providers welcome or adapt to patients' self-stylized tools and systems. Doing so may present opportunity for improved communications and patient-centered care.