To determine whether engaging in advance care planning (ACP) using a formal tool, Voicing My CHOiCES (VMC), would alleviate adolescent and young adults (AYAs) anxiety surrounding ACP and increase social support and communication about end-of-life care preferences with family members and health care providers (HCPs).

A total of 149 AYAs aged 18–39 years receiving cancer-directed therapy or treatment for another chronic medical illness were enrolled at seven US sites. Baseline data included prior ACP communication with family members and HCPs and measures of generalized anxiety, ACP anxiety, and social support. Participants critically reviewed each page of VMC and then completed three pages of the document. ACP anxiety was measured again immediately after the completion of VMC pages. One month later, participants repeated anxiety and social support measures and were asked if they shared what they had completed in VMC with a family member or HCP.

At baseline, 50.3% of participants reported that they previously had a conversation about EoL preferences with a family member; 19.5% with an HCP. One month later, 65.1% had subsequently shared what they wrote in VMC with a family member; 8.9% shared with an HCP. Most (88.6%) reported they would not have had this conversation if not participating in the study. No significant changes occurred in social support. There was an immediate drop in anxiety about EoL planning after reviewing VMC which persisted at 1 month. Generalized anxiety was also significantly lower 1 month after reviewing VMC.

Having a document specifically created for AYAs to guide ACP planning can decrease anxiety and increase communication with family members but not necessarily with HCPs. Future research should examine ways ACP can be introduced more consistently to this young population to allow their preferences for care to be heard, respected, and honored, particularly by their healthcare providers.

In Korea, patients with terminal cancer are often caught out of the loop in end-of-life (EoL) care discussions. Healthcare professionals also have difficulty engaging in such communication in a variety of healthcare contexts. Therefore, the objective of our study was to develop a communication model for EoL care decision making compatible with the clinical environment in Korea.

Using focus-group interview methodology, participants included eight doctors and five nurses who provide EoL care for terminal cancer patients in acute hospital settings or hospice care facilities in various provinces of Korea.

Five themes emerged regarding EoL care discussion, which included: (1) timing, (2) responsible professionals, (3) disclosure of bad news, (4) content areas of EoL care discussion, and (5) implementing strategies for EoL care discussions. These themes were based on development of a communication algorithm for EoL discussion among patients with terminal cancer. A structural communication step for delivery of a terminal prognosis was specified at the phase of disclosure of bad news: beginning with determination of a patient's decision-making capability, followed by a patient's perception of his/her condition, a patient's wish to know, family dynamics, and a patient's and/or family's readiness for EoL discussions.

The proposed context-oriented communication algorithm could provide a helpful guideline for EoL communication and, accordingly, facilitate meaningful improvements in EoL care in Korean clinical practice. The feasibility of this algorithm has not yet been determined, and its validation in a larger sample of patients with terminal cancers, using a quantitative research methodology, is a priority of research.

Many patients with head and neck cancer (HNC) suffer from psychological distress associated with dysfunction and/or disfigurement. Our aim was to evaluate the ratio of patients with persistence of psychological distress during hospitalization and identify the predictors of persistence or change in psychological distress among HNC patients.

We conducted a single-center longitudinal study with self-completed questionnaires. We evaluated psychological distress (the Hospital Anxiety and Depression Scale; HADS) and functional level (the Functional Assessment of Cancer Therapy–Head and Neck Scale; FACT–H&N) among patients during hospitalization at the Medical Hospital of Tokyo Medical and Dental University.

Of 160 patients, 117 (73.1%) completed the questionnaire at both admission and discharge. Some 42 (52.5%) patients reported persistent psychological distress. The physical well-being of patients with continued distress was significantly lower than that of other patients (21.7 ± 4.7, 19.4 ± 6.1, 19.5 ± 5.4; p < 0.01), and the emotional well-being of patients with continued distress was significantly lower than that in patients with no distress and reduced distress (22.3 ± 3.5, 20.5 ± 2.5; p < 0.01).

Impaired physical and emotional function appears to be associated with persistent psychological distress among HNC patients. Psychological interventions focused on relaxation, cognition, or behavior may be efficacious in preventing such persistent distress.

Our objective was to evaluate long-term altered appearance, distress, and body image in posttreatment breast cancer patients and compare them with those of patients undergoing active treatment and with general population controls.

We conducted a cross-sectional survey between May and December of 2010. We studied 138 breast cancer patients undergoing active treatment and 128 posttreatment patients from 23 Korean hospitals and 315 age- and area-matched subjects drawn from the general population. Breast, hair, and skin changes, distress, and body image were assessed using visual analogue scales and the EORTC BR–23. Average levels of distress were compared across groups, and linear regression was utilized to identify the factors associated with body image.

Compared to active-treatment patients, posttreatment patients reported similar breast changes (6.6 vs. 6.2), hair loss (7.7 vs. 6.7), and skin changes (5.8 vs. 5.4), and both groups had significantly more severe changes than those of the general population controls (p < 0.01). For a similar level of altered appearance, however, breast cancer patients experienced significantly higher levels of distress than the general population. In multivariate analysis, patients with high altered appearance distress reported significantly poorer body image (–20.7, CI95% = –28.3 to –13.1) than patients with low distress.

Posttreatment breast cancer patients experienced similar levels of altered appearance, distress, and body-image disturbance relative to patients undergoing active treatment but significantly higher distress and poorer body image than members of the general population. Healthcare professionals should acknowledge the possible long-term effects of altered appearance among breast cancer survivors and help them to manage the associated distress and psychological consequences.

The purpose of this study was to demonstrate effectiveness of an educational training workshop using role-playing to teach medical students in Botswana to deliver bad news.

A 3-hour small group workshop for University of Botswana medical students rotating at the Princess Marina Hospital in Gaborone was developed. The curriculum included an overview of communication basics and introduction of the validated (SPIKES) protocol for breaking bad news. Education strategies included didactic lecture, handouts, role-playing cases, and open forum discussion. Pre- and posttraining surveys assessed prior exposure and approach to breaking bad news using multiple-choice questions and perception of skill about breaking bad news using a 5-point Likert scale. An objective structured clinical examination (OSCE) with a standardized breaking bad news skills assessment was conducted; scores compared two medical student classes before and after the workshop was implemented.

Forty-two medical students attended the workshop and 83% (35/42) completed the survey. Medical students reported exposure to delivering bad news on average 6.9 (SD = 13.7) times monthly, with 71% (25/35) having delivered bad news themselves without supervision. Self-perceived skill and confidence increased from 23% (8/35) to 86% (30/35) of those who reported feeling “good” or “very good” with their ability to break bad news after the workshop. Feedback after the workshop demonstrated that 100% found the SPIKES approach helpful and planned to use it in clinical practice, found role-playing helpful, and requested more sessions. Competency for delivering bad news increased from a mean score of 14/25 (56%, SD = 3.3) at baseline to 18/25 (72%, SD = 3.6) after the workshop (p = 0.0002).

This workshop was effective in increasing medical student skill and confidence in delivering bad news. Standardized role-playing communication workshops integrated into medical school curricula could be a low-cost, effective, and easily implementable strategy to improve communication skills of doctors.

Distress screening guidelines call for rapid screening for emotional distress at the time of cancer diagnosis. The purpose of this study was to examine the distress thermometer's (DT) ability to screen in patients in treatment for advanced cancer who may be depressed.

Using cross-sectional data collected from patients within 30 days of diagnosis with advanced cancer, this study used ROC analysis to determine the optimal-cutoff point of the distress thermometer (DT) for screening for depression as measured by the physician health questionnaire (PHQ)-9; inter-test reliability analysis to compare the DT with the PHQ-2 for screening in possible cases of depression, and multivariate analysis to examine associations among the DT emotional problem list (EPL) items with cases of depression.

The average age of the 123 patients in the study was 59.9 (12.9) years. Seventy (56.9%) were female. All had Stage 3 or 4 cancers (40% gastrointestinal, 19% gynecologic, 20% head and neck, 21% lung). The mean DT score was 4 (2.7)/10; and 56 (43%) were depressed as measured by the PHQ-9 ≥5. The optimal DT cut-off score to screen in possible cases of depression was ≥2/10, with a sensitivity of .96, compared to a sensitivity of .32 of the PHQ-2 ≥2. Correlation coefficients for the DT ≥2 and the PHQ-2 with the PHQ-9 ≥5 were 0.4 and −0.2, respectively. EPL items associated with cases of depression were Depression (OR = 0.15, 0.02–0.85) and Sadness (OR = 0.21, 0.06–0.72).

The optimal DT threshold for identifying possible cases of depression at the time of diagnosis is ≥2; this threshold is more sensitive than the PHQ-2 ≥2. EPL items may be used with the DT score to triage patients for evaluation.

Delirium is a common complication in palliative care patients, especially in the terminal phase of the illness. To date, evidence regarding risk factors and prognostic outcomes of delirium in this vulnerable population remains sparse.

In this prospective observational cohort study at a tertiary care center, 410 palliative care patients were included. Simple and multiple logistic regression models were used to identify associations between predisposing and precipitating factors and delirium in palliative care patients.

The prevalence of delirium in this palliative care cohort was 55.9% and reached 93% in the terminally ill. Delirium was associated with prolonged hospitalization (p < 0.001), increased care requirements (p < 0.001) and health care costs (p < 0.001), requirement for institutionalization (OR 0.11; CI 0.069–0.171; p < 0.001), and increased mortality (OR 18.29; CI 8.918–37.530; p < 0.001). Predisposing factors for delirium were male gender (OR 2.19; CI 1.251–3.841; p < 0.01), frailty (OR 15.28; CI 5.885–39.665; p < 0.001), hearing (OR 3.52; CI 1.721–7.210; p < 0.001), visual impairment (OR 3.15; CI 1.765–5.607; p < 0.001), and neoplastic brain disease (OR 3.63; CI 1.033–12.771; p < 0.05). Precipitating factors for delirium were acute renal failure (OR 6.79; CI 1.062–43.405; p < 0.05) and pressure sores (OR 3.66; CI 1.102–12.149; p < 0.05).

Our study identified several predisposing and precipitating risk factors for delirium in palliative care patients, some of which can be targeted early and modified to reduce symptom burden.

The Family Evaluation of Hospice Care (FEHC) survey is widely employed by hospices, and several studies have examined this information to help inform and enhance end-of-life services. However, these studies have largely focused on examining relatively straightforward associations between variables and have not tested larger models that could reveal more complex effects. The present study aimed to examine the direct and mediating (i.e., via information/education, patient care, and family support) effects of demographic factors, length of stay, timing of referral, patient symptom severity, location of services, and relationship to caregiver on two outcome variables: overall satisfaction and caregiver confidence.

Surveys were collected from 3226 participants who had lost a loved one who received hospice services. Structural equation modeling was employed to examine the direct and mediating effects of the independent variables on the two outcomes of interest.

Participants reporting on racial minority patients, patients with more symptoms, and those referred too late or too early were the most likely to express some discontentment with hospice services. The information/education these individuals received was the only mediating factor significantly associated with caregiver confidence. More positive perceptions of patient care and information/education were both significantly related to greater overall satisfaction.

These findings help to (1) pinpoint those most at risk for being less satisfied with hospice, (2) identify which aspects of care may be most strongly related to overall outcomes, and (3) provide a model for examining complex associations among FEHC variables that may be employed by other researchers.

Uncovering what it means to be a parent during the extraordinary time of a child's life-threatening condition (LTC) is important for understanding family goals, decision making, and the work of parenting within this context.

Qualitative descriptive methods were employed to describe the everyday experience of parenting both children who have an LTC and their healthy siblings.

Some 31 parents of 28 children with an LTC who have healthy siblings participated in our study. Four themes emerged from the data that describe a parental desire to maintain emotional connection with all of their children, how parents use cues from their children to know them better and develop parenting strategies, how parents change as a result of caring for a child with an LTC, and how they strive to decrease suffering for all of their children.

The findings of our study have implications for clinical practice, family-focused research, and health policy pertaining to families of children with life-threatening conditions.

Reliable and validated instruments are needed in order to study the desire for hastened death (DHD). As there is no instrument in the German language to measure DHD, our aim was to validate a German version of the Schedule of Attitudes Toward Hastened Death (SAHD–D).

The SAHD was translated following guidelines promulgated by the European Organization for Research and Treatment of Cancer (EORTC). In eligible patients (clinical situation adequate, MMSE ≥21), the following instruments were employed: a symptom checklist (HOPE), the HADS–D (Hospital Anxiety and Depression Scale), the EORTC-QLQ-PAL15, and the SAHD–D, as well as an external estimation of DHD provided by the attending physician. A high level of DHD was defined as the mean plus one standard deviation (SD).

Of the 869 patients assessed, 92 were eligible for inclusion (66% females, mean age of 64.5 years). The SAHD–D total score ranged from 0 to 18, with a mean of 5 and a standard deviation (SD) of 3.7. A high level of DHD was found in 20% (n = 19). For discriminant validity, significant correlations were found between the SAHD–D and depression (rrho = 0.472), anxiety (rrho = 0.224), and clinical state (rrho = 0.178). For criterion validity, the external estimate of DHD showed a low significant correlation with patient score (rrho = 0.290). Factor analysis of the SAHD–D identified two factors.

Validation of the SAHD–D illustrated good discriminant validity, confirming that a desire to hasten death is a construct separate from depression, anxiety, or physical state. The unidimensionality of the SAHD could not be reproduced. Our findings support the multifactorial interdependencies on DHD and suggest that the SAHD–D should be refined by considering actual wishes, general attitudes, and options of patients.

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.

Family therapy has developed several approaches to framing questions within family meetings, but few of these techniques have been adapted for palliative care. We focus on the application of questioning techniques from systemic family therapy to palliative care. More specifically, we describe and give examples of the model of asking questions developed by Karl Tomm (1988) through its application in Family Focused Grief Therapy (FFGT), a preventive intervention delivered to high-risk families during palliative care and bereavement.

First, the type of questions used across the course of therapy is explored based on the interventive questioning model. Then, a case example is provided to demonstrate the use and adaptation of this model in a palliative care setting.

At the beginning of therapy, the most frequent questions were linear and circular, moving around the family to build up a picture of events from everyone's perspective. As for the frequency of reflexive and strategic questions, these increased as the therapy progressed, bringing the family to new perspectives. The case example fleshes out the importance of each type of question, all of which have a proper place in the course of therapy.

These illustrations highlight the value of having a model of questioning styles to guide the clinician when exploring palliative care issues, such as care provision, coping and grief, intimacy, and discussing death. This framework could be useful in guiding supervisors, trainees, and clinicians seeking to build skills and optimize their interventions in a palliative care setting.

The aim of the study was to clarify the care experience of primary caregivers when caring for a terminal cancer patient in the home with the assistance of a home palliative care service. Participants were asked to provide background data and to evaluate their experience of caregiving and of the patient's response throughout the period of home palliative care, up to the time of death.

One hundred twelve primary family caregivers were a mailed self-report questionnaire, and 74 valid questionnaires were returned (response rate 66%).

Ninety percent felt that the patient's condition of mind and body was reasonably stable, and 75% felt that the death was peaceful. About 90% reported a deepening of their bond with the patient and that the bond of other family members deepened also. Sixty percent reported that the burden of caregiving was not too great or not felt at all. Approximately 90% judged that the patient retained his or her own personal qualities to the end. Ninety percent also felt that they had done their best in their caregiving and judged that home care had been beneficial for the deceased, for the primary caregiver him/herself, and for other family members. These primary caregivers' evaluations of caring for a terminally ill patient at home in conjunction with a home palliative care service were both high and positive.

Our findings suggest that it is important to maintain the patient's personal qualities up to the time of death through appropriate symptom management, to respect the family bond of the household, and to provide professional support in order to reduce the load on the family. If appropriate care is provided, peaceful home death will be possible, resulting in significant benefits for patients and their families in Japan.

Tending to the spiritual needs of patients has begun to be formally recognized by professional spiritual care providers, health care councils, and health delivery systems over the last 30 years. Recognition of these programs has coincided with evidence-based research on the effect of spirituality on health. Palliative care has served as a forerunner to an integrated professional spiritual care approach, recognizing the importance of addressing the spiritual needs of the dying from its inauguration within Western medicine almost 50 years ago. Oncology programs have also begun to recognize the importance of spirituality to patients along the cancer continuum, especially those who are approaching the end of life. Although standards and best practice guidelines have been established and incorporated into practice, little is known about the actual factors affecting the practice of spiritual care programs or professional chaplains working within an oncology setting.

Participant observation and interactive interviews occurred at five cancer programs after we conducted a literature search.

This study identified underlying organizational challenges, cultural and professional issues, academic program development challenges, administrative duties, and therapeutic interventions that determined the success of oncology spiritual care programs in practice.

Although spiritual care services have developed as a profession and become recognized as a service within oncology and palliative care, organizational and operational issues were underrecognized yet significant factors in the success of oncology spiritual care programs. Spiritual care programs that were centrally located within the cancer care center, reported and provided guidance to senior leaders, reflected a multifaith approach, and had an academic role were better resourced, utilized more frequently, and seen to be integral members of an interdisciplinary care team than those services who did not reflect these characteristics.

Hospice utilization lasting for 2 weeks or less before death is considered “short.” Short, late-stage hospice admissions have been viewed as inadequate for providing end-stage symptom management, maximal comfort, and a comprehensive focus on life closure and as an underutilization of the Medicare Hospice Benefit. The purpose of this study was to explore psychosocial dynamics during late-stage hospice admissions by comparing the perspectives of hospice professionals and family caregivers. Salutogenic principles and concepts from Antonovsky's Sense of Coherence Theory (SOC) guided the inquiry.

This exploratory, descriptive study involved a developmental design. First, hospice professionals' perspectives about psychosocial dynamics commonly observed in late-stage admissions were gathered. Themes were distilled into a Psychosocial Factors Checklist (PFC). Second, interviews that incorporated open-ended questions and the PFC were conducted with 56 family caregivers of hospice patients who died from cancer within 2 weeks of admission. Participant responses were transcribed and entered into Atlas ti software for data management and coding. Responses to the PFC were clustered around the SOC constructs (manageability, comprehensibility, meaningfulness) to create corresponding subscales. Interitem correlations were conducted to explore the associations among items.

Late-stage admissions were a crisis (54%), chaotic (43%), emotional (80%), and a time of open communication (80%) and meaningful conversations (73%). Hospice utilization was “just long enough” (49%) and “too short” (49%). The Manageability subscale (M = 4.09) suggested that caregivers experienced moderate difficulty. Manageability included physical challenges, emotional responses, informational needs, and benefits/resources. Comprehensibility emerged from medical results, visual signs, and hospice guidance. Meaningfulness was personal-individual, family-shared, and spiritual-existential.

Hospice professionals and caregivers view late-stage admissions differently; they are a crisis for some but not all families. The development of a quick assessment tool for late-stage admissions has the potential for meaningful and effective intervention when time is of the essence.