This study explores the end-of-life (EoL) beliefs, values, practices, and expectations of a select group of harder-to-reach Chinese women living in England.

A cultural safety approach was undertaken to interpret 11 in-depth, semistructured interviews. Interviews were conducted in Mandarin and Cantonese. Transcripts were translated and back-translated by two researchers. Findings were analyzed using the technical analytical principles of grounded theory.

The key themes generated from our analysis include: acculturation; differential beliefs and norms in providing care: family versus health services; language and communication; Eastern versus Western spiritual practices and beliefs; and dying, death, and the hereafter.

End-of-life discussions can be part of an arduous, painful, and uncomfortable process, particularly for migrants living on the margins of society in a new cultural setting. For some Chinese people living in the United Kingdom, end-of-life care requires attention to acculturation, particularly Western versus Eastern beliefs on religion, spirituality, burial practices, and provision of care, and the availability of culturally specific care, all of which encompass issues related to gender. Stories of a purposive sample of Chinese women were viewed through a cultural safety lens to gain a deeper understanding of how social and cultural norms and expectations, in addition to the pressures of acculturation, impact gendered roles and responsibilities. The analysis revealed variations between/within Eastern and Western culture that resulted in pronounced, and oftentimes gendered, differences in EoL care expectations.

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.

Hospice is a favored setting for dignity care. Studies on dignity dimension in end-of-life patients are growing. The Patient Dignity Inventory (PDI) is a tool that can lead to interesting information on dignity-related aspects of suffering. The study aimed to investigate dignity among end-of-life cancer patients, by examining the Italian version of the PDI factor structure and assessing the relationship between dignity and other patients’ psychosocial and spiritual variables to improve a patient-centered clinical practice.

This is a cross-sectional study. Data were collected using a battery of self-administered validated rating scales. The sample included 127 hospice patients with a life expectancy of a few weeks and a Karnofsky Performance Status ≤40. Factor structure and concurrent validity of PDI and correlations between dignity and anxious and depressive symptomatology, quality of life, demoralization, personal coping styles, spiritual well-being, and spiritual daily experience were analyzed.

Factor analysis highlighted a five-factor solution, accounting for 60% of the overall variance. The factors were labeled Psychological Distress, Social Support, Physical Symptoms and Dependency, Existential Distress, and Loss of Purpose/Meaning. Dignity assessment evidenced that self-blame coping style, emotional and physical well-being, and depression were the loss of dignity significant predictors (R2 = 0.605; p < 0.01).

The results point out the intercultural validity of the PDI and empower an accurate detection of dignity-related distress sources in the daily clinical practice. Personality traits seem to have an active role in the loss of dignity, whereas spirituality is confirmed to be positively involved in dignity enhancement.

Caregiver symptom assessment is not part of regular clinical cancer care. The ESAS (Edmonton Symptom Assessment System) is a multidimensional tool regularly used to measure symptom burden in patients but not caregivers. The objectives of the present study were to determine the feasibility of the ESAS in caregiver completion (defined as ≥ 9 of 12 items) and determine its concurrent validity with the Zarit Burden Interview–12 (ZBI–12).

We conducted a prospective study on 90 patient–primary caregiver dyads seen in an outpatient supportive care center in a cancer center. The 12 item ESAS–FS (financial–spiritual) was completed by the dyads along with other clinical and psychosocial measures.

The caregiver ESAS was found to be feasible (90/90 caregivers, 100% completed ≥ 9/12 items) and useful (66/90 caregivers, 73%) by caregivers to report their symptom burden. Some 68 of 90 (76%) caregivers had symptom distress scores ≥ 4 on at least one symptom. A significant association was found between the ESAS scores of caregivers and patients for fatigue (0.03), depression (<0.01), anxiety (<0.01), sleep (0.05), well-being (<0.01), financial distress (<0.01), spiritual pain (<0.01), and total ESAS score (<0.01). Concurrent validity with the ZBI–12 was not achieved (r = 0.53, p = 0.74). A significant correlation was found between caregiver ESAS scores and time spent feeding, housekeeping, total combined caregiver activities, and total ZBI–12 scores.

The caregiver ESAS is a feasible tool and was found useful by our caregivers. Further research is needed to modify the ESAS based on caregivers' recommendations, and further psychometric studies need to be conducted.

Surrogates involved in decisions to limit life-sustaining treatment for a loved one in the intensive care unit (ICU) are at increased risk for adverse psychological outcomes that can last for months to years after the ICU experience. Post-ICU interventions to reduce surrogate distress have not yet been developed. We sought to (1) describe a conceptual framework underlying the beneficial mental health effects of storytelling, and (2) present formative work developing a storytelling intervention to reduce distress for recently bereaved surrogates.

An interdisciplinary team conceived the idea for a storytelling intervention based on evidence from narrative theory that storytelling reduces distress from traumatic events through emotional disclosure, cognitive processing, and social connection. We developed an initial storytelling guide based on this theory and the clinical perspectives of team members. We then conducted a case series with recently bereaved surrogates to iteratively test and modify the guide.

The storytelling guide covered three key domains of the surrogate's experience of the patient's illness and death: antecedents, ICU experience, and aftermath. The facilitator focused on the parts of a story that appeared to generate strong emotions and used nonjudgmental statements to attend to these emotions. Between September 2012 and May 2013, we identified 28 eligible surrogates from a medical ICU and consented 20 for medical record review and recontact; 10 became eligible, of whom 6 consented and completed the storytelling intervention. The single-session storytelling intervention lasted from 40 to 92 minutes. All storytelling participants endorsed the intervention as acceptable, and five of six reported it as helpful.

Surrogate storytelling is an innovative and acceptable post-ICU intervention for recently bereaved surrogates and should be evaluated further.

To obtain preliminary knowledge to design a randomized controlled trial to clarify the effects of spiritual care using the Spiritual Pain Assessment Sheet (SpiPas).

The study was designed as a nonrandomized controlled trial. The study took place between January 2015 and July 2015 in a hematology and oncology ward and two palliative care units in Japan. Among 54 eligible patients with advanced cancer, 46 were recruited (24 in the control group vs. 22 in the intervention group). The intervention group received spiritual care using SpiPas and usual care; the control group received usual care. The primary outcome was the Functional Assessment of Chronic Illness Therapy-Spiritual (FACIT-Sp). The secondary outcomes were the Hospital Anxiety and Depression Scale (HADS) and Comprehensive Quality of Life Outcome (CoQoLo).

A total of 33 (72%) and 23 (50%) patients completed 2- and 3-week follow-up evaluations, respectively. The differences in the changes during 2 weeks in total scores of FACIT-Sp and HADS were significant (95% confidence intervals, 3.65, 14.4, p < 0.01; –11.2 to –1.09, p = .02, respectively). No significant changes were observed in the total score of CoQoLo.

Spiritual care using the SpiPas might be useful for improving patient spiritual well-being. This controlled clinical trial could be performed and a future clinical trial is promising if outcomes are obtained within 2 weeks.

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.

Delirium is the most common neuropsychiatric complication of medical illness, a medical emergency that needs to be identified and treated vigorously. Delirium is too frequently underdiagnosed and untreated in the medical setting, which leads to increased morbidity and mortality, interference in the management of symptoms such as pain, an increased length of hospitalization, increased health care costs, and distress for patients and their caregivers (Inouye, 2006; Breitbart et al., 2002a, 2002b). In this article, we present an update of the use of antipsychotics in management of delirium based on the available literature and our own clinical experience.

We reviewed the current literature on the role of antipsychotics in the management of delirium using standard computer-based search methods (e.g., PubMed).

Antipsychotic medications, including the new atypical antipsychotics, have been demonstrated to effectively manage a wide spectrum of the symptoms of delirium and are an essential component in the multimodal approach to managing delirium.

The standard approach to managing delirium includes identification and elimination of factors contributing to the delirium in addition to pharmacological and nonpharmacological treatment interventions (Trzepacz et al., 1999). Newer atypical antipsychotics can play an important role in the management of the symptoms of delirium.

Hope promotes oncology patients’ adaptability to their illness, regardless of the stage of cancer. This study aimed to determine the prevalence of hope in a sample of end-of-life patients and to investigate the possible relationships between hope and a set of clinical and psychosocial measures.

Three hundred and fifty end-of-life oncology patients, with a presumed life expectancy of 4 months or less and a Karnofsky Performance Status (KPS) of 50 or lower, were administered the Italian validated versions of a set of rating scales during their first consultation with a psychologist. This included the Herth Hope Index (HHI), Patient Dignity Inventory (PDI), Demoralization Scale (DS), Hospital Anxiety and Depression Scale (HADS), Functional Assessment of Chronic Illness Therapy (FACIT-Sp), and the Visual Analogue Scale for pain (VAS).

On average, the sample scored between moderate and high on the HHI and the average level of spirituality was high. However, most patients had clinically relevant anxious and depressive symptomatology and high levels of demoralization. Other than the pain scale, the total HHI score significantly correlated with the total scores of all rating scales and their subscales, as well as with the measure of personal religious practice. The “Meaning” FACIT-Sp subscale was found to be the main predictor of hope.

Since hope represents a core need and a tool for patients dealing with their illness, it is essential to implement stage-specific and realistic hope-facilitating interventions and support patients in their search for meaning, which promotes spiritual well-being and appears relevant in fostering hope.

To examine differences in the phenomenological characteristics of delirium superimposed on dementia compared to those observed in delirious patients without dementia, based on the rating items of the Memorial Delirium Assessment Scale (MDAS).

We conducted an analysis of a prospectively collected clinical delirium database utilized to record and monitor the care of delirious patients treated at Memorial Sloan-Kettering Cancer Center (MSKCC). Sociodemographic, medical variables, and MDAS total score and individual item ratings were analyzed in respect to differences between delirium in the demented (DD) versus delirium in the nondemented (ND).

We were able to examine data collected on 100 delirious patients: 82 ND patients and 18 DD patients. Patients in the DD group, compared to the ND group, had significantly greater levels of disturbance of consciousness and impairments in all cognitive domains (i.e., orientation, short term memory, concentration, organization of thought process). Severe symptoms were more common in the DD group compared to the ND group on all the MDAS cognitive items as well as in disturbance of consciousness. There were no significant differences between the DD and ND groups in terms of presence or severity of hallucinations, delusions, psychomotor behavior, and sleep–wake cycle disturbance.

Delirium superimposed on dementia has phenomenological differences compared to delirium in the absence of dementia. There are no significant differences in the severity of hallucinations, delusions, psychomotor behavior, or sleep–wake cycle disturbances. However, level of disturbance in consciousness (arousal and awareness) and impairments in multiple cognitive domains are significantly more severe in patients with delirium superimposed on dementia.

International studies have shown that patients want their spiritual needs attended to at the end of life. The present authors developed a project to investigate people's understanding of spirituality and spiritual care practices in New Zealand (NZ) hospices.

A mixed-methods approach included 52 semistructured interviews and a survey of 642 patients, family members, and staff from 25 (78%) of NZ's hospices. We employed a generic qualitative design and analysis to capture the experiences and understandings of participants' spirituality and spiritual care, while a cross-sectional survey yielded population level information.

Our findings suggest that spirituality is broadly understood and considered important for all three of the populations studied. The patient and family populations had high spiritual needs that included a search for (1) meaning, (2) peace of mind, and (3) a degree of certainty in an uncertain world. The healthcare professionals in the hospices surveyed seldom explicitly met the needs of patients and families. Staff had spiritual needs, but organizational support was sometimes lacking in attending to these needs.

As a result of our study, which was the first nationwide study in NZ to examine spirituality in hospice care, Hospice New Zealand has developed a spirituality professional development program. Given that spirituality was found to be important to the majority of our participants, it is hoped that the adoption of such an approach will impact on spiritual care for patients and families in NZ hospices.

Asia's first national advance care planning (ACP) program was established in Singapore in 2011 to enhance patient autonomy and self-determination in end-of-life (EoL) care decision-making. However, no known study has examined the extent to which ACP in Singapore successfully met its aims. The purpose of the current study was to examine the attitudes of local healthcare professionals on patients’ autonomy in decision-making at the EoL since they strongly influence the extent to which patient and family wishes are fulfilled.

Guided by the Interpretive-Systemic Framework and Proctor's conceptual taxonomy of implementation research outcomes, an interview guide was developed. Inquiries focused on healthcare professionals’ attitudes towards ACP, their clinical experiences working with patients and families, and their views on program effectiveness. Sixty-three physicians, nurses, medical social workers, and designated ACP coordinators who were actively engaged in ACP facilitation were recruited from seven major hospitals and specialist centers in Singapore through purposive sampling. Twelve interpretive-systemic focus groups were conducted, recorded, transcribed, and analyzed using a thematic analysis.

The extent to which patients in Singapore can exert autonomy in EoL care decision-making is influenced by five themes: (i) collusion over truth-telling to patient, (ii) deferment of autonomy by patients, (iii) negotiating patient self-determination, (iv) relational autonomy as the gold standard and (v) barriers to realization of patient choices.

Healthcare practitioners in Asian communities must align themselves with the values and needs of patients and their family and jointly make decisions that are consistent and congruent with the values of patients and their families. Sensitivity towards such cross-cultural practices is key to enhancing ACP awareness, discourse, and acceptability in Asian communities.

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.

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.

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

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

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

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

This 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.

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.

The objectives of this study were to obtain patient evaluations of the content, structure, and delivery modality of Meaning-Centered Pain Coping Skills Training (MCPC), a novel psychosocial intervention for patients with advanced cancer and pain. MCPC aims to help patients connect with valued sources of meaning in their lives (e.g., family relationships), while providing training in evidence-based cognitive and behavioral skills (e.g., guided imagery) to reduce pain.

Semi-structured interviews were conducted with 12 patients with stage IV solid tumor cancers and persistent pain. Transcripts were analyzed using methods from applied thematic analysis.

When evaluating MCPC's educational information and skills training descriptions, participants described ways in which this content resonated with their experience. Many coped with their pain and poor prognosis by relying on frameworks that provided them with a sense of meaning, often involving their personally held religious or spiritual beliefs. They also expressed a need for learning ways to cope with pain in addition to taking medication. A few participants offered helpful suggestions for refining MCPC's content, such as addressing common co-occurring symptoms of sleep disturbance and fatigue. Concerning MCPC's structure and delivery modality, most participants preferred that sessions include their family caregiver and described remote delivery (i.e., telephone or videoconference) as being more feasible than attending in-person sessions.

Participants were interested in an intervention that concurrently focuses on learning pain coping skills and enhancing a sense of meaning. Using remote delivery modalities may reduce access barriers (e.g., travel) that would otherwise prevent many patients from utilizing psychosocial services.