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.

Our aim was to examine the characteristics of delirium in the severely medically ill cancer population on the basis of sociodemographic and medical variables, delirium severity, and phenomenology, as well as severity of medical illness.

All subjects in the database were recruited from psychiatric referrals at Memorial Sloan Kettering Cancer Center (MSKCC). Sociodemographic and medical variables, as well as the Karnofsky Performance Status (KPS) scale and Memorial Delirium Assessment Scale (MDAS) scores were recorded at baseline. Subsequently, these variables were analyzed with respect to the severity of the medical illness.

Out of 111 patients, 67 qualified as severely medically ill. KPS scores were 19.7 and 30.7 in less severe illness. There were no significant differences with respect to age, history of dementia, and MDAS scores. Although the severity of delirium did not differ, an increased frequency and severity of consciousness disturbance, disorientation, and inability to maintain and shift attention did exist. With respect to etiologies contributing to delirium, hypoxia and infection were commonly associated with severe illness. In contrast, corticosteroid administration was more often associated with less severe illness. There were no differences with respect to opiate administration, dehydration, and CNS disease, including brain metastasis.

Delirium in the severely medically ill cancer population has been characterized by an increased disturbance of consciousness, disorientation, and an inability to maintain and shift attention. However, the severity of illness did not predict severity of delirium. Furthermore, hypoxia and infection were etiologies more commonly associated with delirium in severe illness, whereas the administration of corticosteroids was associated with less severe illness.

To explore how patients experience being in the hospital environment and the meaning they assign to the environment during serious illness.

A qualitative study design was applied, and the data analysis was inspired by Ricoeur's phenomenological-hermeneutic theory of interpretation. Data were collected through multiple qualitative interviews combined with observations at a teaching hospital in Denmark from May to September 2011. A total of 12 patients participated.

The findings showed that the hospital environment has a strong impact on patients' emotions and well-being. They reported that aesthetic decorations and small cozy spots for conversation or relaxation created a sense of homeliness that reinforced a positive mood and personal strength. Furthermore, being surrounded by some of their personal items or undertaking familiar tasks, patients were able to maintain a better sense of self. Maintaining at least some kind of familiar daily rhythm was important for their sense of well-being and positive emotions.

The results stress the importance of an aesthetically pleasing and homelike hospital environment as part of palliative care, since the aesthetic practice and a sense of homeliness strengthened patients' experiences of well-being, relief, and positive emotions while in a vulnerable situation. Such knowledge could encourage the development of new policies regarding appropriate care settings, which in turn could result in overall improved care during serious illness.

There is growing recognition of the importance of increasing preparedness for and the provision of palliative care in humanitarian crises. The primary objective of this review is to interpret the existing literature on culture and palliative care to query the recommendation that humanitarian healthcare providers, teams, and organizations integrate palliative care into their practice in ways that are attentive to and respectful of cultural differences.

A critical interpretive synthesis was applied to a systematic literature review guided by the PRISMA framework. Analysis was based on directed data extraction and was team based, to ensure rigor and consistency.

In total, 112 articles covering 51 countries and 9 major worldviews met inclusion criteria. This literature describes culture as it influences perspectives on death and dying, expectations of palliative care, and challenges to providing culturally sensitive care. A key pattern highlighted in articles with respect to the culture and palliative care literature is that culture is invoked in this literature as a sort of catch-all for non-white, non-Christian, indigenous practices, and preferences for palliative care. It is important that humanitarian healthcare providers and organizations aiming to enact their commitment of respect for all persons through attention to potential culturally specific approaches to pain management, suffering, and dying in specific crisis settings do so without reproducing Othering and reductionistic understandings of what culturally sensitive care in humanitarian crises settings involves.

This paper clarifies and unpacks the diverse influences of culture in palliative care with the goal of supporting the preparedness and capacity of humanitarian healthcare providers to provide palliative care. In doing so, it aids in thinking through what constitutes culturally sensitive practice when it comes to palliative care needs in humanitarian crises. Providing such care is particularly challenging but also tremendously important given that healthcare providers from diverse cultures are brought together under high stress conditions.

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 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.

Late or non-referral of patients to specialist palliative care (SPC) services may affect patients' and their carers' quality of care. General practitioners (GPs) are key professionals in linking people with SPC. The aim of this article is to assess GPs' perceptions and SPC referrals for their patients with advanced cancer and differences between metropolitan (M GPs) and non-metropolitan GPs (NM GPs).

Self-report survey mailed to a stratified random sample of 1,680 Australian GPs was used.

Thirty-one percent (469) of eligible GPs returned surveys. More M GPs than NM GPs reported referring >60% of their patients for SPC (p = 0.014); and that a more comprehensive range of SPC services was available. The most frequently reported referral prompts were: presence of terminal illness (M GPs, 71%, NM GPs, 66%, ns (not significant)); future need for symptom control (69% vs. 59%, ns) and uncontrolled physical symptoms (63% vs. 54%, ns). Reasons for not referring were: doctor's ability to manage symptoms (62% vs. 68%, ns) and the absence of symptoms (29% vs. 18%, p = 0.025). Higher referral was associated with: having a palliative care physician or consultative service available; agreeing that all patients with advanced cancer should be referred, and agreeing that with SPC, the needs of the family are better met.

Referrals for SPC were primarily disease-related rather than for psychological and emotional concerns. Measures are needed to encourage referrals based upon psychosocial needs as well as for physical concerns, and to support GPs caring for people with advanced cancer in areas with fewer comprehensive SPC services.

Experiences of bereavement can be stressful and are frequently complicated by emotional, familial, and financial issues. Some—though not all—caregivers may benefit from bereavement support. While considered standard within palliative care services in Australia, bereavement support is not widely utilized by family caregivers. There is little research focused on the forms of bereavement support desired or required by family caregivers, how such care is viewed, and/or how bereavement support is experienced. This study examined the experiences of bereaved family caregivers and their impressions of and interactions with bereavement support.

This paper reports on one aspect of a broader study designed to explore a range of experiences of patients and caregivers to and through palliative care. Focusing on experiences of bereavement, it draws on qualitative semistructured interviews with 15 family caregivers of palliative care patients within a specialist palliative care unit of an Australian metropolitan hospital. The interviews for this stage of the study were initiated 3–9 months after an initial interview with a family caregiver, during which time the palliative patient had died, and they covered family caregivers' experiences of bereavement and bereavement support. Interviews were digitally audiotaped and transcribed in full. A thematic analysis was conducted utilizing the framework approach wherein interview transcripts were reviewed, key themes identified, and explanations developed.

The research identified four prevalent themes: (1) sociocultural constructions of bereavement support as for the incapable or socially isolated; (2) perceptions of bereavement support services as narrow in scope; (3) the “personal” character of bereavement and subsequent incompatibility with formalized support, and (4) issues around the timing and style of approaches to being offered support.

Systematic pre-bereavement planning and careful communication about the services offered by palliative care bereavement support centers may improve receipt of support among bereaved family caregivers in need.

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.

A major barrier to the adoption of an approach that integrates spirituality into palliative care is the lack of preparation/education of healthcare professionals on the topic. This study aimed to evaluate the effectiveness of a continuing education activity for healthcare professionals addressing spirituality and spiritual care provision to patients and families within palliative care.

We conducted an intervention study using a quantitative pre- and posttest design in a convenience sample of 52 healthcare professionals. Participants completed the Brazilian version of the Spiritual Care Competence Scale before and after attending a four-hour continuing education activity.

Significant differences were observed between pre- and postintervention scores in the following dimensions: assessment and implementation of spiritual care, professionalization and improving the quality of spiritual care, personal support, and patient counseling (p < 0.001), and referral (p = 0.003).

The results of this study provide preliminary evidence of a positive effect of this educational intervention on the development of the competences needed by healthcare professionals to deliver a comprehensive approach centered on the patient/family, which includes attention to spirituality and spiritual care in the decision-making process.

In palliative care, effective communication is essential to adequately meet the needs and preferences of patients and their relatives. Effective communication includes exchanging information, facilitates shared decision-making, and promotes an empathic care relationship. We explored the perspectives of patients with an advanced illness and their relatives on effective communication with health-care professionals.

A systematic review was conducted. We searched Embase, Medline, Web of Science, CINAHL, and Cochrane for original empirical studies published between January 1, 2015 and March 4, 2021.

In total, 56 articles on 53 unique studies were included. We found 7 themes that from the perspectives of patients and relatives contribute to effective communication: (1) open and honest information. However, this open and honest communication can also trigger anxiety, stress, and existential disruption. Patients and relatives also indicated that they preferred (2) health-care professionals aligning to the patient’s and relative’s process of uptake and coping with information; (3) empathy; (4) clear and understandable language; (5) leaving room for positive coping strategies, (6) committed health-care professionals taking responsibility; and (7) recognition of relatives in their role as caregiver. Most studies in this review concerned communication with physicians in a hospital setting.

Most patients and relatives appreciate health-care professionals to not only pay attention to strictly medical issues but also to who they are as a person and the process they are going through. More research is needed on effective communication by nurses, in nonhospital settings and on communication by health-care professionals specialized in palliative care.

Similar to delirium, its subsyndromal form has been recognized as the cause of diverse adverse outcomes. Nonetheless, the nature of this subsyndromal delirium remains vastly understudied. Therefore, in the following, we evaluate the phenomenological characteristics of this syndrome versus no and full-syndromal delirium.

In this prospective cohort study, we evaluated the Delirium Rating Scale–Revised, 1998 (DRS–R–98) versus the Diagnostic and Statistical Manual of Mental Disorders, 4th ed., Text Revision (DSM–IV–TR) diagnostic criteria and examined the diagnosis of delirium with respect to phenomenological distinctions in the intensive care setting.

Out of 289 patients, 36 with subsyndromal delirium versus 86 with full-syndromal and 167 without delirium were identified. Agreement with respect to the DSM–IV–TR diagnosis of delirium was perfect. The most common subtype in those with subsyndromal delirium was hypoactive, in contrast to mixed subtype in those with full-syndromal delirium versus no motor alterations in those without delirium. By presence and severity of delirium symptoms, subsyndromal delirium was intermediate. The ability of the DRS–R–98 items to discriminate between either form of delirium was substantial. Between subsyndromal and no delirium, the cognitive domain and sleep–wake cycle were more impaired and allowed a distinction with no delirium. Further, between full- and subsyndromal delirium, the prevalence and severity of individual DRS–R–98 items were greater. Although the differences between these two forms of delirium was substantial, the items were not very specific, indicating that the phenomenology of subsyndromal delirium is closer to full-syndromal delirium.

Phenomenologically, subsyndromal delirium was found to be distinct from and intermediate between no delirium and full-syndromal delirium. Moreover, the greater proximity to full-syndromal delirium indicated that subsyndromal delirium represents an identifiable subform of full-syndromal delirium.

Patients who receive palliative home care are in need of support from family members, who take on great responsibility related to caregiving but who often feel unprepared for this task. Increasing numbers of interventions aimed at supporting family members in palliative care have been described and evaluated. It is not known whether and how these interventions actually affect the care or support provided to a patient, even though it has been suggested that family members would be likely to provide better care and support and thus allow for positive experiences for patients. However, this has not been studied from the perspective of the patients themselves. The objective of our study was to explore patients' experiences of care and support at home after family members' participation in a psychoeducational intervention during palliative care.

Our study took a qualitative approach, and interviews were conducted with 11 patients whose family members had participated in a psychoeducational intervention during palliative home care. The interviews were analyzed employing interpretive description.

Patients' experiences were represented by three themes: “safe at home,” “facilitated and more honest communication,” and “feeling like a unit of care.” Patients felt that their needs were better met and that family members became more confident at home without risking their own health. Patients felt relieved when family members were given the opportunity to talk and reflect with others and hoped that the intervention would contribute to more honest communications between themselves and their family members. Further, it was of great importance to patients that family members receive attention from and be confirmed and supported by healthcare professionals.

Our findings show how an intervention targeted at family members during palliative home care also benefits the patients.

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.

Parkinson's disease (PD) is a progressive neurodegenerative condition often resulting in significant disability and impacting on one's ability to participate in an occupation. The present study aimed to explore how people with advanced Parkinson's disease experience the phenomenon of occupation in their daily lives in order to inform the practice of occupational therapy in palliative care.

Using a phenomenological approach, in-depth interviews were undertaken with a purposive sample of 10 people in the advanced stages of Parkinson's disease. These interviews were audiotaped, transcribed verbatim, and subsequently analyzed using a thematic content analysis approach. The study received approval from the relevant university ethics committee, as well as the research network of Parkinson's UK.

The experience of occupation emerged as being physical, psychological, social, and spiritual with related subthemes. Within each of these themes, participants described their experience of occupation that they valued and that were important to their daily lives. They also identified the strategies they employed to continue participating in certain occupations and described others they were no longer able to engage in and the impact of that loss.

Participants' experiences crossed the domains of palliative care and suggest that adopting a palliative care approach would enhance an enhanced quality of life, experienced in terms of meaningful and valuable occupation. Disruption to participation in occupation caused them distress and frustration, suggesting that access to occupation-focused therapy would significantly improve quality of life for people with PD. As there is a strong link between the ethos of occupational therapy and palliative care, it is proposed that there is a valuable role for occupational therapy intervention to play within palliative care.

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.

Palliative sedation is a method of symptom management frequently used in hospices to treat uncontrolled symptoms at the end of life. There is a substantial body of literature on this subject; however, there has been little research into the experiences of hospice nurses when administering palliative sedation in an attempt to manage the terminal restlessness experienced by cancer patients.

Semistructured interviews were conducted with a purposive sample of seven hospice nurses who had cared for at least one patient who had undergone palliative sedation within the past year in a hospice in the south of England in the United Kingdom. A phenomenological approach and Colaizzi's stages of analysis were employed to develop themes from the data.

Facilitating a “peaceful death” was the primary goal of the nurses, where through the administration of palliative sedation they sought to enable and support patients to be “comfortable,” “relaxed,” and “calm” at the terminal stage of their illness. Ethical dilemmas related to decision making were a factor in achieving this. These were: medication decisions, “juggling the drugs,” “causing the death,” sedating young people, the family “requesting” sedation, and believing that hospice is a place where death is hastened.

Hospice nurses in the U.K. frequently encounter ethical and emotional dilemmas when administering palliative sedation. Making such decisions about using palliative sedation causes general discomfort for them. Undertaking this aspect of care requires confidence and competence on the part of nurses, and working within a supportive hospice team is of fundamental importance in supporting this practice.

This systematic literature review aimed to critically appraise empirical evidence investigating palliative care (PC) nurses’ experiences of stress, anxiety, and burnout.

Six databases (PsycINFO, MEDLINE, Scopus, CINAHL, PubMed, and Web of Science) covering literature within psychology, medicine and healthcare, and social sciences were searched from inception until December 2020. Studies were eligible if they included qualitative literature reporting on experiences of nurses working in a PC setting of stress, anxiety, or burnout, and were published in English. Eighteen studies satisfied the review's inclusion criteria and were considered relevant to the review aims. Critical appraisal was undertaken using the Critical Appraisal Skills Programme Qualitative Checklist.

Thematic synthesis identified three main themes: When work becomes personal, The burden on mind and body, and Finding meaning and connection. The findings suggested that stress, anxiety, and burnout are deeply personal feelings experienced by nurses both on an emotional and physical level. Additionally, PC nurses’ experiences can differ in meaning and strength depending on their relationships with patients, patients’ families, and colleagues.

The synthesis highlighted that PC nurses' experiences are complex, encompassing clinical and organizational challenges, and the personal impact their work has on them. Having a greater understanding of the factors that contribute to PC nurses’ experiences may help in PC nurses’ core training and continuing professional education, as well as the provision of effective supervision and staff support.