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.

Delirium is a frequent and severe complication of serious pediatric illness. Development of a nonpharmacologic approach to prevent pediatric delirium may improve short- and long-term outcomes in children and their families. In this brief report, we describe the development of a quality improvement project designed to methodically promote the family member's engagement, comforting, and orienting activities with their critically ill child to decrease delirium rates.

We created a developmentally specific Delirium Prevention Toolkit for families. In a feasibility pilot, March through June 2016, we offered the kit to 15 patients and their families. On discharge, families were asked to describe use of the toolkit and whether or not it was helpful for them.

Twelve of 15 patients and families used various elements of the toolkit, particularly the headphones, music, and games; no one regularly used the blank journal. All reported that it was easy and helpful to have as support for their stay in the pediatric intensive care unit.

This pilot demonstrated practicality of a nonpharmacologic delirium prevention toolkit in the pediatric intensive care unit, and satisfaction from patients and families.

Although hospice agencies are required to provide informal caregivers (family or friends of the patient) with formal bereavement support when their loved one passes, most bereavement interventions lack standardization and remain untested. We employed the Dual Processing Model of Bereavement as a theoretical framework for assessing the potential of a secret Facebook group for bereaved hospice caregivers.

A mixed-methods approach was utilized to analyze online communication (posts and comments) in the secret Facebook group, and self-reported outcome measures on depression and anxiety were compared pre- and post-intervention.

Sixteen caregivers participated in the secret Facebook group over a period of nine months. The majority of online talk was oriented to restoration, revealing abrupt and anticipated triggers that evoked feelings of loss. Caregivers also shared loss orientation through storytelling, sharing and giving advice, and encouraging others to manage the challenges of coping. Caregiver anxiety and depression were lower after the intervention.

This pilot study provides insight into the use of a secret Facebook group to facilitate bereavement support to caregivers. Findings highlight the promise of Facebook for hospice bereavement support. Providers and researchers are encouraged to explore the positive outcomes associated with bereavement support.

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.

This study aimed to contribute to the validation of the Portuguese version of the Prolonged Grief Disorder Questionnaire–Predeath (PG–12), examining its psychometric properties, including factorial, discriminant, and predictive validity. The prevalence of predeath prolonged grief disorder (PGD) and its psychosocial correlates were also analyzed.

The PG–12 was assessed in a sample of family caregivers (FCs) of oncological patients in palliative care. The factorial and discriminant validity of the PG–12 were evaluated by confirmatory factor analysis. The prevalence of predeath PGD was calculated and correlated with sociodemographic characteristics, perception of illness, intensity of care, coping, and caregiver burden. Prospective data were used to assess predictive validity.

The sample was composed of 94 FCs, mostly female (78.8%) and daughters (61.3%), with a mean age of 52.02 (SD = 12.87). The PG–12 has been shown to be reliable, to have high internal consistency, to be monofactorial in structure, and to be independent from depression, anxiety, and burden, although predeath grief influences these symptoms. In our sample, 33% met the criteria for predeath PGD. The circumstances and coping mechanisms are also correlated with predeath grief. The PG–12 has also been shown to be predictive of postdeath outcome.

The PG–12 can be a useful screening tool for early identification of risk for maladjustment to loss among family caregivers.

Few decision aids are available for patients with a serious illness who face many treatment and end-of-life decisions. We evaluated the Looking Ahead: Choices for Medical Care When You're Seriously Ill® patient decision aid (PtDA), one component of an early palliative care clinical trial.

Our participants included individuals with advanced cancer and their caregivers who had participated in the ENABLE (Educate, Nurture, Advise, Before Life Ends) early palliative care telehealth randomized controlled trial (RCT) conducted in a National Cancer Institute-designated cancer center, a U.S. Department of Veterans Affairs medical center, and affiliated outreach clinics in rural New England. ENABLE included six weekly patient and three weekly family caregiver structured sessions. Participants watched the Looking Ahead PtDA prior to session 3, which covered content on decision making and advance care planning. Nurse coaches employed semistructured interviews to obtain feedback from consecutive patient and caregiver participants approximately one week after viewing the Looking Ahead PtDA program (booklet and DVD).

Between April 1, 2011, and October 31, 2012, 57 patients (mean age = 64), 42% of whom had lung and 23% gastrointestinal cancer, and 20 caregivers (mean age = 59), 80% of whom were spouses, completed the PtDA evaluation. Participants reported a high degree of satisfaction with the PtDA format, as well as with its length and clarity. They found the format of using patient interviews “validating.” The key themes were: (1) “the earlier the better” to view the PtDA; (2) feeling empowered, aware of different options, and an urgency to participate in advance care planning.

The Looking Ahead PtDA was well received and helped patients with a serious illness realize the importance of prospective decision making in guiding their treatment pathways. We found that this PtDA can help seriously ill patients prior to the end of life to understand and discuss future healthcare decision making. However, systems to routinely provide PtDAs to seriously ill patients are yet not well developed.

This article is a literature report on grief issues for health care professionals, undertaken to identify Japanese nurses' grief experience when they work in palliative care units. Health care professionals' grief experience and its impact have not been well understood or identified as a significant issue in Japan.

Published articles relating to this study were searched using electronic catalogues such as CINAHL and PsycINFO, books, and research publications. Key words used for the search were “grief,” “palliative care,” “nurse,” “staff support,” and “Japan.” Both English and Japanese were used for the literature search in order to collect information regarding nurses' grief and support systems in Japan and elsewhere. The literature search covered the period 1990–2006 inclusive.

This article explores these issues in the literature as preparation for establishing a study that will particularly look at the influence of nurses' grief on the quality of care provided.

Consideration of Japanese culture as it relates to death and dying and to nursing culture is a significant part of this work.

Delirium is characterized by disturbances of consciousness and changes in cognition that develop rapidly and fluctuate. It is common in palliative care, affecting up to 88% of patients with advanced cancer, yet often remains insufficiently diagnosed and managed. This study sought to compare rates of screening, documentation, and management of delirium across three palliative care settings — two hospices and one hospital team — and to determine whether definitive documentation of delirium as a diagnosis is associated with improved management of the disorder.

A retrospective review of patient case notes was performed in three U.K. palliative care settings for the presence of: cognitive screening tools on first assessment; the term “delirium” as a stated documented diagnosis; documented terms, descriptions, and synonyms suggestive of delirium; and management plans aimed at addressing delirium.

We reviewed 319 notes. The prevalence of delirium as a documented diagnosis ranged from 0 to 8.4%, rising to 35.7–39.2% when both documented delirium and descriptions suggestive of delirium were taken into account. An abbreviated mental test score (AMTS) was determined for 19.6 (H1) and 26.8% (H2) of hospice admissions and for 0% of hospital assessments. Symptoms suggestive of delirium were managed in 56.3% of cases in hospital, compared with 66.7 (H1) and 72.2% (H2) in hospices.

Use of the term “delirium” was infrequent in both hospital and hospice palliative care settings, as was the use of routine screening. Many identified cases did not receive targeted management. The definitive use of the term as a diagnosis was associated with clearer management plans in hospital patients. The authors suggest that better screening and identification remains the first step in improving delirium management.

Little is known about the current views and practices of healthcare professionals (HCPs) in Sub-Saharan Africa (SSA) regarding delivery of hospital palliative care. The present qualitative study explored the views of nursing staff and medical professionals on providing palliative and end-of-life care (EoLC) to hospital inpatients in Tanzania.

Focus group discussions were conducted with a purposive sample of HCPs working on the medical and pediatric wards of the Kilimanjaro Christian Medical Centre, a tertiary referral hospital in northern Tanzania. Transcriptions were coded using a thematic approach.

In total, 32 healthcare workers were interviewed via 7 focus group discussions and 1 semistructured interview. Four major themes were identified. First, HCPs held strong views on what factors were important to enable individuals with a life-limiting diagnosis to live and die well. Arriving at a state of “acceptance” was the ultimate goal; however, they acknowledged that they often fell short of achieving this for inpatients. Thus, the second theme involved identifying the “barriers” to delivering palliative care in hospital. Another important factor identified was difficulty with complex communications, particularly “breaking bad news,” the third theme. Fourth, participants were divided about their personal preferences for “place of EoLC,” but all emphasized the benefits of the hospital setting so as to enable better symptom control.

Despite the fact that all the HCPs interviewed were regularly involved in providing palliative and EoLC, they had received limited formal training in its provision, although they identified such training as a universal requirement. This training gap is likely to be present across much of SSA. Palliative care training, particularly in terms of communication skills, should be comprehensively integrated within undergraduate and postgraduate education. Research is needed to develop culturally appropriate curricula to equip HCPs to manage the complex communication challenges that occur in caring for a diverse inpatient group with palliative care needs.

People with pancreatic cancer have poor survival, and management is challenging. Pancreatic cancer patients' perceptions of their care coordination and its association with their outcomes have not been well-studied. Our objective was to determine if perception of care coordination is associated with patient-reported outcomes or survival.

People with pancreatic cancer who were 1–8 months postdiagnosis (52 with completed resection and 58 with no resection) completed a patient-reported questionnaire that assessed their perceptions of care coordination, quality of life, anxiety, and depression using validated instruments. Mean scores for 15 care-coordination items were calculated and then ranked from highest (best experience) to lowest (worst experience). Associations between care-coordination scores (including communication and navigation domains) and patient-reported outcomes and survival were investigated using general linear regression and Cox regression, respectively. All analyses were stratified by whether or not the tumor had been resected.

In both groups, the highest-ranked care-coordination items were: knowing who was responsible for coordinating care, health professionals being informed about their history, and waiting times. The worst-ranked items related to: how often patients were asked about visits with other health professionals and how well they and their family were coping, knowing the symptoms they should monitor, having sufficient emotional help from staff, and access to additional specialist services. For people who had a resection, better communication and navigation scores were significantly associated with higher quality of life and less anxiety and depression. However, these associations were not statistically significant for those with no resection. Perception of cancer care coordination was not associated with survival in either group.

Our results suggest that, while many core clinical aspects of care are perceived to be done well for pancreatic cancer patients, improvements in emotional support, referral to specialist services, and self-management education may improve patient-reported outcomes.

There has been an increasing interest in the measurement of patients efforts to find meaning during the experience of a life-threatening illness. The aim of this study was to validate the German version of the Life Attitude Profile–Revised (LAP-R), a multidimensional measure of meaning and purpose.

A total of 511 prostate cancer patients with an average age of 64 years filled in the questionnaire during outpatient follow up care (response rate 70%).

Five of the original six dimensions were replicated by exploratory and confirmatory factor analysis: Coherence, Existential Vacuum, Choice/Responsibleness, Death Acceptance, and Goal Seeking. The Purpose dimension was not replicated. Most LAP-R subscales showed good internal consistencies with Cronbach's α between .80 and .82, whereas the reliability for Existential Vacuum (α = .69) and Goal Seeking (α = .74) was less sufficient, but still acceptable. Results show significant concurrent associations between all LAP-R dimensions and measures of emotional distress, coping, and health-related quality of life; however, moderate correlations were found only for Existential Vacuum and depression, and inversely for depressive coping and the mental health subscale.

The German LAP-R is a reliable and valid instrument that can be recommended for further use in research and clinical cancer care.

Complications of neuropsychiatric disorders are often detected in cancer patients. Adjustment disorders, depression, or delirium are common psychiatric disorders in these patients, and drug-induced neuropsychiatric problems are sometimes referred for psychiatric consultation. Prochlorperazine and other antiemetic drugs that are phenothiazine derivates are also reported to cause akathisia due to the blockade of the dopamine receptor in the central nervous system, but the prevalence of akathisia in patients undergoing cancer treatment has not been reported. This study seeks to explore the prevalence of such drug-induced syndromes (e.g., akathisia) in this population.

This present study was a prospective study. The subjects of this study were 483 consecutive patients with cancer who had been referred to the Department of Psychiatry in Kanagawa Prefecture Cancer Center from February 1, 2004, to November 30, 2005. Trained psychiatrists conducted a nonstructured psychiatric interview and neurologic examination to establish psychiatric diagnoses according to DSM-IV and the presence or absence of drug-induced extra pyramidal symptoms. The past and current medications used in their cancer treatment were also examined in detail for an accurate evaluation.

A psychiatric diagnosis was made in 420 (87.0%) of the 483 cancer patients examined, and akathisia, a drug-induced movement disorder, was unexpectedly prevalent among the patients; 20 of 420 (4.8%) patients had developed akathisia from an antiemetic drug, prochlorperazine.

Diagnosing such adverse drug reactions may be difficult due to complicating factors in cancer treatment, and the inner restlessness observed in akathisia is likely to be regarded as a symptom of a primary psychiatric disorder. The authors suggest that oncologists should optimize the use of antiemetic drugs and be aware of akathisia as a possible complication of cancer treatment.

Diagnosis of a parent's cancer has a profound influence on the parent, the children and the child–parent relationship, and puts all family members at risk for psychological distress. This article describes the development and the first attempts at implementation of an intervention aimed at helping people cope with difficulties arising from being both parents and cancer patients.

Based on themes discussed in focus groups with parents coping with cancer and with professionals in the field, a four-module psychological intervention was developed. The modules are: Telling and Sharing, Children’ Responses, Routine and Changes, and Learning and Awareness as a Parent. The techniques used are mainly psycho-educational and cognitive–behavioral.

Preliminary experience showed this intervention to be more feasible as a one-day workshop than as a four-session intervention. Parents who participated in two workshops reported it to be helpful in empowering them as parents and in imparting learning tools for identifying their children's needs, as well as for communicating with their children.

Intervention tailored specifically for parents coping with cancer can be relevant for their special needs. Research is needed to establish the effectiveness of this intervention.

Our aim was to describe physicians' perceptions of the suffering of their patients who are dying with dementia, many of whom are incompetent with regard to decision making and have difficulty with communicating about the source of their distress and with identifying related factors.

We analyzed data from the nationally representative observational Dutch End-of-Life in Dementia (DEOLD) cohort study (2007–2011), which involved 34 long-term care facilities. A total of 103 physicians completed questionnaires about 330 patients with dementia who had died in a participating facility. Suffering during the last six hours of life was defined as “a patient being disturbed by or aware of symptoms,” “suffering until the end or death was a struggle”—all related to objective indicators of lack of comfort. We employed generalized estimating equation models to assess associations of suffering with the characteristics of physicians and patients, the patient's death, and the decision-making process.

In 13.8% of cases, the physician felt that the patient had suffered. An unexpected death and death with pneumonia were strongly (an odds ratios close to 6) associated with suffering, and suffering was also independently associated with the physician's perception of worse quality of end-of-life care, death with cardiovascular disease, a less experienced physician, no palliative sedation, and a younger patient.

Most patients with dementia did not suffer during their final hours of life, according to their physicians. There are a number of factors associated with suffering, among them death with pneumonia and unexpected death. We may not be able to have much influence on death from pneumonia, but quality of care and an unexpected death are reasonable targets for intervention. Earlier identification of the beginning of the dying process would allow time to better prepare for approaching death, which would provide a source of comfort.

A scoping research literature review on “bad death” was undertaken to assess the overall state of the science on this topic and to determine what evidence exists on how often bad deaths occur, what contributes to or causes a bad death, and what the outcomes and consequences of bad deaths are.

A search for English-language research articles was conducted in late 2016, with 25 articles identified and all retained for examination, as is expected with scoping reviews.

Only 3 of the 25 articles provided incidence information, specifying that 7.8 to 23% of deaths were bad and that bad deaths were more likely to occur in hospitals than in community-care settings. Many different factors were associated with bad deaths, with unrelieved pain being the most commonly identified. Half of the studies provided information on the possible consequences or outcomes of bad deaths, such as palliative care not being initiated, interpersonal and team conflict, and long-lasting negative community effects.

This review identified a relatively small number of research articles that focused in whole or in part on bad deaths. Although the reasons why people consider a death to be bad may be highly individualized and yet also socioculturally based, unrelieved pain is a commonly held reason for bad deaths. Although bad and good deaths may have some opposing causative factors, this literature review revealed some salient bad death attributes, ones that could be avoided to prevent bad deaths from occurring. A routine assessment to allow planning so as to avoid bad deaths and enhance the probability of good deaths is suggested.