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

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

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

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

Our aim was to describe the clinical evolution and needs of children with spinal muscular atrophy type I treated in a domiciliary palliative care program.

We undertook a retrospective chart review of nine consecutive patients. Descriptions of the clinical and demographic profile of children with spinal muscular atrophy (SMA) type I were referred to a pediatric palliative care team (PPCT).

Six males and three females were admitted to the PPCT, all before six months of age, except for one afflicted with SMA type I with respiratory distress. The median time of attention was 57 days (range 1–150). The domiciliary attention mainly consisted of respiratory care. The patient with SMA type I with respiratory distress required domiciliary mechanical ventilation by tracheotomy. In all cases, a nasogastric tube (NT) was indicated. As end-of-life care, eight required morphine to manage the dyspnea, four received it only by enteral (oral or NT) administration, and four received it first by enteral administration with continuous subcutaneous infusion (CSI) later. Three of the four patients with CSI also received benzodiazepines. While they were attended by the PPCT, none required hospital admission. All the patients died at home except for the one attended to for just one day.

Domiciliary care for these patients is possible. The respiratory morbidity and its management are the main issues. Application of an NT is useful to maintain nutritional balance. Morphine administration is necessary to manage the dyspnea. Palliative sedation is not always necessary.

Spiritual care is recognized as an essential component of palliative care (PC). However, patients' experience of spirituality is heavily context dependent. In addition, Western definitions and findings regarding spirituality may not be applicable to patients of non-Western origin, such as Indian PC patients. Given the particular sociocultural, religious, and economic conditions in which PC programs in India operate, we decided to undertake a systematic review of the literature on spirituality among Indian PC patients. We intended to assess how spirituality has been interpreted and operationalized in studies of this population, to determine which dimensions of spirituality are important for patients, and to analyze its ethical implications.

In January of 2015, we searched five databases (ATLA, CINAHL, EMBASE, PsycINFO, and PubMed) using a combination of controlled and noncontrolled vocabulary. A content analysis of all selected reports was undertaken to assess the interpretation and dimensions of spirituality. Data extraction from empirical studies was done using a data-extraction sheet.

A total of 39 empirical studies (12 qualitative, 21 quantitative, and 6 mixed-methods) and 18 others (10 reviews, 4 opinion articles, and 4 case studies) were retrieved. To date, no systematic review on spirituality in Indian PC has been published. Spirituality was the main focus of only six empirical studies. The content analysis revealed three dimensions of spirituality: (1) the relational dimension, (2) the existential dimension, and (3) the values dimension. Religion is prominent in all these dimensions. Patients' experiences of spirituality are determined by the specifically Indian context, which leads to particular ethical issues.

Since spiritual well-being greatly impacts quality of life, and because of the substantial presence of people of Indian origin living outside the subcontinent, the findings of our review have international relevance. Moreover, our review illustrates that spirituality can be an ethical challenge and that more ethical reflection on provision of spiritual care is needed.

End-of-life (EoL) communication in long-term care (LTC) homes is often inadequate and delayed, leaving residents dying with unknown preferences or goals of care. Poor communication with staff contributes to families feeling unprepared, distressed, and dissatisfied with care. Family care conferences (FCCs) aim to increase structured systematic communication around goals and plans for the end of life. As part of the Strengthening a Palliative Approach to Care (SPA–LTC) project, FCCs were implemented in four LTC sites in Ontario, Canada. The purpose of this substudy was to examine FCC content and such guiding processes as documentation and multidisciplinary staff participation.

A total of 24 FCCs were held for residents with a Palliative Performance Scale score of 40% (nearing death). Data were collected from conference forms (i.e., Family Questionnaires, Care Plan Conference Summaries), site-specific electronic chart documents, and fieldnotes. Directed content analysis of data was informed by the Canadian Hospice Palliative Care Association's Square of Care Model, which describes eight domains of care: disease management, physical, psychological, social, practical, spiritual, EoL, and loss/bereavement.

The FCCs addressed an average of 71% of the content domains, with physical and EoL care addressed most frequently and loss/bereavement addressed the least. Two goals and five interventions were documented and planned on average per FCC. Examination of the processes supporting EoL communication found: (1) advantages to using FCC forms versus electronic charts; and (2) high levels of multidisciplinary participation overall but limited participation of personal support workers (PSWs) and physicians.

Communication around the end of life in LTC can be supported through the use of FCCs. Description of content and FCC processes provides guidance to persons implementing FCCs. Recommendations for tailoring conferences to optimize communication include use of specific conference forms, increased bereavement discussion, and further engagement of PSWs and physicians.

The current study explores the relationship between attachment styles, social support, gender and finding meaning in caregiving among spousal caregivers of colorectal cancer patients.

Sixty caregivers (30 men and 30 women) were administered questionnaires assessing attachment styles, social support and finding meaning in caregiving, using a cross-sectional design.

For male caregivers avoidance attachment is associated with their finding meaning, whereas for female caregivers social support is associated with their finding meaning.

Psychological interventions for caregivers should take into consideration gender differences and might benefit from addressing the process of finding meaning in caregiving.

Since February 2016, French Claeys-Leonetti law has recognized patients' right to confront incurable diseases with short-term prognosis and refractory physical or psychological or existential symptoms by requesting continuous deep sedation until death (CDSUD). Determining when psychological or existential distress is refractory and unbearable remains complex and controversial.

This review provides a comprehensive thought on CDSUD for advanced incurable patients with refractory psychological and/or existential distress in palliative care settings. It offers guidance on psychiatric or psychological diagnosis for explaining patients' requests for CDSUD.

A narrative literature review (2000–2019) was conducted on the MedLine search about the use of palliative sedation in cases of refractory psychological and/or existential distress.

(1) Definitions of “refractory symptom,” “refractory psychological distress,” and “refractory existential distress” are inconsistent; (2) alternative diagnoses might obscure or be obscured by psycho-existential distress; and (3) criteria on meanings, reasons for requests, decision-making processes, and functions are evolving in practice.

Before implementing CDSUD, palliative healthcare professionals should seek input from psycho-oncologists in palliative care. Mental health professionals should analyze and assess the reasons for psychological and/or existential distress, consider the intentionality processes of requests, and explore alternative diagnoses, such as depressive or adjustment disorders, demoralization syndrome, desire to hasten death, and desire for euthanasia. Therapeutic responses (e.g., pharmacological and psychotherapeutic) should be implemented before deciding that psycho-existential distress is refractory.

The FAMCARE Scale was originally designed to measure family satisfaction with advanced cancer care. The current study evaluated the instrument's psychometric qualities when used in the long-term care (LTC) setting.

In a prospective cohort study in 2004, the 20-item instrument was administered via telephone to family members of 51 patients receiving LTC in Veterans Affairs facilities. Satisfaction scores on a 5-point Likert scale were used for factor analysis and internal consistency evaluation.

Although 16 patients were in geriatric palliative care and 35 were in nursing home care, scores of their family members did not vary based on care unit. The total satisfaction score was high, with a mean (SD) of 44.7 (11.9) and a Cronbach alpha of 0.94. Inter-item correlations were low for care availability items (range, 0.01–0.59). Two items—availability of a hospital bed and availability of nurses to the family—had low eigenvalues (0.26 and 0.18, respectively) and weak correlations with the total score (0.23 and 0.16, respectively).

In the LTC setting, FAMCARE appears to have good internal consistency, but it may be preferable to exclude the two items with weak correlations and to use a 10-point visual analog scale.

The Korean advance directive (K–AD) comprises a value statement, treatment directives, preferences for cardiopulmonary resuscitation (CPR), artificial ventilation, tube feeding, and hospice care, as well as a proxy appointment. The K–AD can facilitate a patient's decision making with respect to end-of-life (EoL) care. The present study aimed to examine the extent to which patient–caregiver dyads would use the K–AD and agree on EoL care decisions.

Using a descriptive study design, 81 cancer patients were invited to participate. The final sample consisted of 44 patient–caregiver dyads who completed survey questionnaires, including the K–AD. One patient did not complete all parts of the questionnaire, and 36 (44.4%) declined to participate. Content analysis was conducted to examine the K–AD value statements. Cohen's kappa coefficient was calculated to determine the degree of patient–caregiver dyadic agreement on K–AD treatment directives (Sudore & Fried, 2010).

Our patient participants had the following cancer diagnoses: colorectal 29.5%, breast 29.5%, and liver/biliary tract cancers, 15.9%. Half of the sample had advanced-stage disease. Spouses (70.5%) or adult children (20.4%) were the primary caregivers, with perceived bonding rated as fair (31.8%) or good (65.9%). Rejection of the K–AD was mainly due to the difficulty involved in deciding on EoL care (50%). Comfort while dying was the most common theme expressed by patients (73.8%) and caregivers (66.7%). In terms of treatment directives, dyads advocated for hospice care (66.7%) and reduced support for aggressive treatments of CPR or artificial ventilation. The use of CPR (κ = 0.43, p = 0.004) and artificial ventilation (κ = 0.28, p = 0.046) showed significantly mild to moderate concordance among the dyads. Some 16 of the 21 dyads identified their spouses as a proxy, with others designating their adult children.

The degree of patient–caregiver concordance on the K–AD seemed applicable, and achieved mild to moderate concordance. Our findings are exploratory but suggest the need for EoL discussions where patient–caregiver dyads are encouraged to participate in EoL care decision making.

The purpose of this study is to describe the post-treatment goals of colorectal cancer (CRC) survivors. We sought to determine whether goals were a salient concept during the period immediately following treatment, and whether a goal-setting intervention might be feasible and acceptable to these patients.

Semi-structured qualitative interviews were administered to a convenience sample of 41 CRC patients who were 0–24 months post-treatment. Topics discussed included expectations and goals for future health, cancer prevention awareness, health-promoting behavior-change goals, and post-treatment cancer issues. Content analysis was used to explore emergent themes.

Overall, participants’ health-related goals were: being healthy, getting back to normal, and not having a cancer recurrence. Most of the CRC survivors reported being proactive with their health by maintaining healthy behaviors or making healthy behavior changes, or had goals to change their behavior. All respondents had plans to maintain follow-up care and regular screening appointments. Some patients were managing treatment side effects or non-cancer issues that limited their functional abilities. Many respondents were satisfied with the care they received, and felt it was now their responsibility to do their part in taking care of themselves.

CRC survivors talk about goals, and many of them are either making or have an interest in making health behavior changes. Self-management support could be an appropriate strategy to assist patients with achieving their health goals post-treatment. Patients may need help addressing lingering treatment side effects or non-cancer issues. Healthcare providers should consider assessing patients’ goals to help patients resolve post-treatment issues and promote healthy behaviors.

The prevalence rates and adversities of delirium have not yet been systematically evaluated and are based on selected populations, limited sample sizes, and pooled studies. Therefore, this study assesses the prevalence rates and outcome of and odds ratios for managing services for delirium.

In this prospective cohort study, based on the Diagnostic and Statistical Manual (DSM) 5, the Delirium Observation Screening (DOS) scale, and the Intensive Care Delirium Screening Checklist (ICDSC) construct, 28,118 patients from 35 managing services were included, and the prevalence rates and adverse outcomes were determined by simple logistic regressions and their corresponding odds ratios (ORs).

Delirious patients were older, admitted from institutions (OR 3.44–5.2), admitted as emergencies (OR 1.87), hospitalized twice longer, and discharged, transferred to institutions (OR 5.47–6.6) rather than home (OR 0.1), or deceased (OR 43.88). The rate of undiagnosed delirium was 84.2%. The highest prevalence rates were recorded in the intensive care units (47.1–84.2%, pooled 67.9%); in the majority of medical services, rates ranged from 20% to 40% (pooled 26.2%), except, at both ends, palliative care (55.9%), endocrinology (8%), and rheumatology (4.4%). Conversely, in surgery and its related services, prevalence rates were lower (pooled 13.1%), except for cardio- and neurosurgical services (53.3% and 46.4%); the lowest prevalence rate was recorded in obstetrics (2%).

Delirium remains underdiagnosed, and novel screening approaches are required. Furthermore, this study identified the impact of delirium on patients, determined the prevalence rates for 32 services, and elucidated the association between individual services and delirium.

A priority focus on palliative and supportive care is helping the 43.5 million caregivers who care for individuals with serious illness. Lacking support may lead to caregiver distress and poorer care delivery to patients with serious illness. We examined the potential of instrumental support (assistance with material and task performance) to mitigate distress among caregivers.

We analyzed data from the nationally representative Health Information National Trends Survey (HINTS V2, 2018). Informal/family caregivers were identified in HINTS V2 if they indicated they were caring for or making healthcare decisions for another adult with a health problem. We used the PROMIS® instrumental support four-item short-form T-scores and the Patient Health Questionnaire (PHQ-4) for distress. We examined multivariable linear regression models for associations between distress and instrumental support, adjusted for sampling weights, socio-demographics, and caregiving variables (care recipient health condition(s), years caregiving (≥2), relationship to care recipient, and caregiver burden). We examined interactions between burden and instrumental support on caregiver distress level.

Our analyses included 311 caregivers (64.8% female, 64.9% non-Hispanic White). The unweighted mean instrumental support T-score was 50.4 (SD = 10.6, range = 29.3–63.3); weighted mean was 51.2 (SE = 1.00). Lower instrumental support (p < 0.01), younger caregiver age (p < 0.04), higher caregiving duration (p = 0.008), and caregiver unemployment (p = 0.006) were significantly associated with higher caregiver distress. Mean instrumental support scores by distress levels were 52.3 (within normal limits), 49.4 (mild), 48.9 (moderate), and 39.7 (severe). The association between instrumental support and distress did not differ by caregiver burden level.

Poor instrumental support is associated with high distress among caregivers, suggesting the need for palliative and supportive care interventions to help caregivers leverage instrumental support.

The objective of this study was to explore and contrast the experience and meaning of breathlessness in patients with chronic obstructive pulmonary disease (COPD) or lung cancer at the end of life.

We conducted a qualitative study embedded in a longitudinal study using topic-guided in-depth interviews with a purposive sample of patients suffering from breathlessness affecting their daily activities due to advanced (primary or secondary) lung cancer or COPD stage III/IV. All interviews were audiotaped, transcribed verbatim, and analyzed using framework analysis.

Ten COPD and eight lung cancer patients were interviewed. Both groups reported similarities in their experience. These included exertion through breathlessness throughout the illness course, losses in their daily activities, and the experience of breathlessness leading to crises. The main difference was the way in which patients adapted to their particular illness experience and the resulting crises over time. While COPD patients more likely sought to get their life with breathlessness under control, speaking of daily living with breathlessness under certain conditions, the participating lung cancer patients often faced the possibility of death and expressed a need for security.

Breathlessness leads to crises in patients with advanced disease. Although experiences of patients are similar, reactions and coping mechanisms vary and are more related to the disease and the stage of disease.

Family-centered care provides family members with basic needs, which includes information, reassurance, and support. Though national guidelines exist, clinical adoption often lags behind in this area. The Geisinger Health System developed and implemented a program for reliable delivery of best practices related to family communication to patients and families admitted to the intensive care unit (ICU).

Using a quasiexperimental study design and the 24-item Family Satisfaction in the Intensive Care Unit questionnaire (FSICU–24©) to determine family satisfaction, we measured the impact of a “family communication pathway” facilitated by tools built into the electronic health record on the family satisfaction of neurosurgical patients admitted to the ICU.

There was no statistically significant difference noted in family satisfaction as determined by FSICU–24 scores, including the Care and Decision Making constructs between the pre- and post-intervention pilot population. The percentage of families reporting the occurrence of a family conference showed only minimal improvement, from 46.5% before to 52.5% following the intervention (p = 0.565). This was mirrored by low numbers of documented family conferences by providers, suggesting poor uptake despite buy-in, use of electronic checklists, and repeated attempts at education.

This paper reviews the challenges to and implications for implementing national guidelines in the area of family communication in an ICU coupled with the principles of clinical reengineering.

The aim of this study was to investigate the primary concerns of terminally ill cancer patients in a Short-Term Life Review among Japanese, Koreans, and Americans to develop intervention programs to be tailored to patients in other countries.

Twenty Japanese, 16 Korean, and 7 American terminally ill cancer patients who were in the hospice wards of general Christian hospitals in each country participated in this study. Medical staff members (nurses, social workers, clinical psychologists) performed Short-Term Life Review Interviews with each patient. Patients reviewed their lives in the first session, the interviewers made simple albums for each patient in the week following the first session, and patients and interviewers then confirmed the contents of the album. The treatment period was 1 week. Measurement instruments included the Functional Assessment Chronic Illness Therapy–Spiritual (FACIT-Sp) and the Hospital Anxiety and Depression Scale (HADS). The contents of each interview session were transcribed, and correspondence analysis and a significance test were conducted on these data to select characteristic words or phrases.

Using the FACIT-Sp scores, the following concerns were chosen, in descending order of frequency. In Japan, primary concerns consisted of such ideas as “good human relationships and transcendence,” “achievements and satisfaction,” “good memories and important things,” and “bitter memories.” In Korea, “religious life,” “right behavior for living,” “strong consideration for children and will,” and “life for living” were primary concerns. In the United States, “love, pride, will to children,” “good, sweet memories,” and “regret and a feeling of loss” were primary concerns.

We clarify the differences among the primary concerns from the Short-Term Life Reviews, arguing that we can improve the spiritual well-being of terminally ill cancer patients by focusing on the primary concerns within each country.