The present study aims were (1) to identify the proportion of terminally ill cancer patients with desire for hastened death (DHD) receiving specialized palliative care, (2) to identify the reasons for DHD, and (3) to classify patients with DHD into some interpretable subgroups.

Advanced cancer patients admitted to 23 inpatients hospices/palliative care units in 2017 were enrolled. Data were prospectively obtained by the primarily responsible physicians. The presence/absence of DHD and reasons for DHD were recorded. A cluster analysis was performed to identify patterns of subgroups in patients with DHD.

Data from 971 patients, whose Richmond Agitation–Sedation Scale score at admission was zero and who died in palliative care units, were analyzed. The average age was 72 years, common primary cancer sites were the gastrointestinal tract (31%) and the liver/biliary ducts/pancreas (19%). A total of 174 patients (18%: 95% confidence interval, 16–20) expressed DHD. Common reasons for DHD were dependency (45%), burden to others (28%), meaninglessness (24%), and inability to engage in pleasant activities (24%). We identified five clusters of patients with DHD: cluster 1 (35%, 61/173): “physical distress,” cluster 2 (21%, 37/173): “dependent and burdensome,” cluster 3 (19%, 33/173): “hopelessness,” cluster 4 (17%, 30/173): “profound fatigue,” and cluster 5 (7%, 12/173): “extensive existential suffering.”

A considerable number of patients expressed DHD and could be categorized into five subgroups. These findings may contribute to the development of therapeutic strategies.

To use data from a national quality register to investigate if there are differences relating to migrant background in the quality of end-of-life care of patients dying in Sweden.

A retrospective, comparative register-based study. In total, 81,418 deceased patients, over 18 years of age, registered in the Swedish Register of Palliative Care during 2017 and 2018, of expected death were included in the study. Of these, 72,012 were Swedish-born and 9,395 were foreign-born. Descriptive and analytical statistical methods were used.

No general pattern of differences in quality regarding end-of-life care was found between Swedish- and foreign-born patients. There were several significant differences in various quality indicators but not in a specific direction. Sometimes, the quality indicators showed an advantage for Swedish-born patients but just as often, they were also favorable for foreign-born patients. Swedish-born patients had greater access to specialized palliative care than foreign-born patients. Foreign-born patients were more often cared for in general home care setting, despite a higher frequency of cancer diagnosis.

Foreign-born patients were less likely to be cared for in specialized palliative care units and had poorer access to palliative care teams than Swedish-born patients, despite having a higher proportion of cancer diagnoses. However, no general pattern was found indicating that foreign-born patients were disadvantaged in the quality indicators measured in the present study. Perhaps, this is an indication that the palliative care in Sweden is individualized; nonetheless, the quality of end-of-life care would be higher if dying patients, regardless of country of birth, have better access to specialized palliative care.

To investigate the influence of care place and diagnosis on care communication during the last 3 months of life for people with advanced illness, from the bereaved family members’ perspective.

A retrospective survey design using the VOICES(SF) questionnaire with a sample of 485 bereaved family members (aged: 20−90 years old, 70% women) of people who died in hospital was employed to meet the study aim.

Of the deceased people, 79.2% had at some point received care at home, provided by general practitioners (GPs) (52%), district nurses (36.7%), or specialized palliative home care (17.9%), 27.4% were cared for in a nursing home and 15.7% in a specialized palliative care unit. The likelihood of bereaved family members reporting that the deceased person was treated with dignity and respect by the staff was lowest in nursing homes (OR: 0.21) and for GPs (OR: 0.37). A cancer diagnosis (OR: 2.36) or if cared for at home (OR: 2.17) increased the likelihood of bereaved family members reporting that the deceased person had been involved in decision making regarding care and less likely if cared for in a specialized palliative care unit (OR: 0.41). The likelihood of reports of unwanted decisions about the care was higher if cared for in a nursing home (OR: 1.85) or if the deceased person had a higher education (OR: 2.40).

This study confirms previous research about potential inequalities in care at the end of life. The place of care and diagnosis influenced the bereaved family members’ reports on whether the deceased person was treated with respect and dignity and how involved the deceased person was in decision making regarding care.

This study investigated death anxiety in patients with primary brain tumor (PBT). We examined the psychometric properties of two validated death anxiety measures and determined the prevalence and possible determinants of death anxiety in this often-overlooked population.

Two cross-sectional studies in neuro-oncology were conducted. In Study 1, 81 patients with PBT completed psychological questionnaires, including the Templer Death Anxiety Scale (DAS). In Study 2, 109 patients with PBT completed similar questionnaires, including the Death and Dying Distress Scale (DADDS). Medical and disease-specific variables were collected across participants in both studies. Psychometric properties, including construct validity, internal consistency, and concurrent validity, were investigated. Levels of distress were analyzed using frequencies, and determinants of death anxiety were identified using logistic regression.

The DADDS was more psychometrically sound than the DAS in patients with PBT. Overall, 66% of PBT patients endorsed at least one symptom of distress about death and dying, with 48% experiencing moderate-severe death anxiety. Generalized anxiety symptoms and the fear of recurrence significantly predicted death anxiety.

The DADDS is a more appropriate instrument than the DAS to assess death anxiety in neuro-oncology. The proportion of patients with PBT who experience death anxiety appears to be higher than in other advanced cancer populations. Death anxiety is a highly distressing symptom, especially when coupled with generalized anxiety and fears of disease progression, which appears to be the case in patients with PBT. Our findings call for routine monitoring and the treatment of death anxiety in neuro-oncology.

Although important treatment decisions are made in the Emergency Department (ED), conversations about patients’ goals and values and priorities often do not occur. There is a critical need to improve the frequency of these conversations, so that ED providers can align treatment plans with these goals, values, and priorities. The Serious Illness Conversation Guide has been used in other care settings and has been demonstrated to improve the frequency, quality, and timing of conversations, but it has not been used in the ED setting. Additionally, ED social workers, although integrated into hospital and home-based palliative care, have not been engaged in programs to advance serious illness conversations in the ED. We set out to adapt the Serious Illness Conversation Guide for use in the ED by social workers.

We undertook a four-phase process for the adaptation of the Serious Illness Conversation Guide for use in the ED by social workers. This included simulated testing exercises, pilot testing, and deployment with patients in the ED.

During each phase of the Guide's adaptation, changes were made to reflect both the environment of care (ED) and the clinicians (social workers) that would be using the Guide. A final guide is presented.

This report presents an adapted Serious Illness Conversation Guide for use in the ED by social workers. This Guide may provide a tool that can be used to increase the frequency and quality of serious illness conversations in the ED.

The aim was to to establish core components of spiritual care training for healthcare professionals in Australia.

This study used the Delphi technique to undertake a consensus exercise with spiritual care experts in the field of healthcare. Participant opinion was sought on (i) the most important components of spiritual care training; (ii) preferred teaching methods; (iii) clinical scenarios to address in spiritual care training; and (iv) current spiritual assessment and referral procedures.

Of the 107 participants who responded in the first round, 67 (62.6%) were female, 55 (51.4%) worked in pastoral care, and 84 (78.5%) selected Christian as their religious affiliation. The most highly ranked components of spiritual care training were “relationship between health and spirituality,” followed by “definitions of spirituality and spiritual care.” Consensus was not achieved on the item “comparative religions study/alternative spiritual beliefs.” Preferred teaching methods include case studies, group discussion, role-plays and/or simulated learning, videos of personal stories, and self-directed learning. The most highly ranked clinical scenario to be addressed in spiritual care training was “screening for spiritual concerns for any patient or resident.” When asked who should conduct an initial spiritual review with patients, consensus was achieved regarding all members of the healthcare team, with most nominating a chaplain or “whoever the patient feels comfortable with.” It was considered important for spiritual care training to address one's own spirituality and self-care. Consensus was not achieved on which spiritual care assessment tools to incorporate in training.

This Delphi study revealed that spiritual care training for Australian healthcare professionals should emphasize the understanding of the role of spirituality and spiritual care in healthcare, include a range of delivery methods, and focus upon the incorporation of spiritual screening. Further work is required to identify how spiritual care screening should be conducted within an Australian healthcare setting.

This study reports the evaluation of the original 31-item Quality of Dying and Death Questionnaire (QODD) using a sample of caregivers of recently deceased older adults in China, and the validation of a shortened version (QODD-C) derived from the original scale.

The translation was performed using a forward and back method. The full scale was tested with 212 caregivers of decedents in four regions of China. Confirmatory factor analysis tested the model fit between the full Chinese version and the original conceptual model and generated the QODD-C. The psychometric analysis was performed to evaluate the QODD-C's internal consistency, content validity, construct validity, and discriminant validity.

A five-domain, 18-item QODD-C was identified with excellent internal consistency reliability (Cronbach's α = 0.933; split-half Pearson's value = 0.855). The QODD-C total score was significantly associated with constructs related to five domains. The caregiver's relationship with the decedent, the decedent's age at death, death reason, and death place was significantly associated with the QODD-C total score.

The QODD-C is a valid and reliable instrument for assessing the quality of dying and death among the Chinese populations.

The goal of palliative and supportive care is to improve patients’ quality of life (QoL). Patient-reported outcome measures (PROMs) are the gold standard for the assessment of QoL and symptoms; however, when self-reporting is complicated, PROMs are often substituted with proxy-reported outcome measures, such as clinician-reported outcome measures. The objective of this study was to assess the validity and reliability of the Japanese version of the Integrated Palliative care Outcome Scale (IPOS) for staff (IPOS-Staff).

This multicenter, cross-sectional observational study was conducted concurrently with the validation of the IPOS for patients (IPOS-Patient). Japanese adult patients with cancer and their staff were recruited. We assessed the characteristics of the patients and staff members, missing values, prevalence, and total IPOS scores. For the analysis of criterion validity, intra-rater, and inter-rater reliability, we calculated intraclass correlations (ICCs).

One hundred and forty-three patients completed the IPOS-Patient, and 79 medical staff members completed the IPOS-Staff. The most common missing values from IPOS-Staff were Family Anxiety (3.5%) and Sharing Feelings (3.5%). Over half of the patients scored themselves moderate or worse for Poor Mobility, Anxiety, and Family Anxiety, while staff members scored patients moderate or worse for Weakness, Anxiety, and Family Anxiety. For criterion validity (patient–staff agreement) as well as intra-rater and inter-rater reliability, ICCs ranged from 0.114 (Sharing Feelings) to 0.826 (Nausea), 0.720 (Anxiety) to 0.933 (Nausea), and −0.038 (Practical Problems) to 0.830 (Nausea), respectively.

The IPOS-Staff is easy to respond to; it has fair validity and reliability for physical items but poor for psycho-social items. By defining the context and objectives of its use and interpretation, the IPOS-Staff can be a useful tool for measuring outcomes in adult patients with cancer who cannot complete self-evaluations.

In recent years, the use of both molecular targeting agents (MTAs) and immune-checkpoint inhibitors (ICIs) tend to occupy important positions in systemic anticancer therapy (SACT). The objective of this study is to describe the predictors of SACT include both MTAs and ICIs near the end of life (EOL) and the effect on EOL care in patients with advanced cancer.

We analyzed all patients who died of advanced cancer from August 2016 to August 2019, and we analyzed the survival time of patients who underwent anticancer agents excluded due to the loss of information about the last administration of SACT. The primary endpoint of this study was to identify predictors during the last administration of SACT near EOL.

In a multivariate analysis, the Eastern Cooperative Oncology Group performance status (ECOG-PS) (ORs 33.781) was significantly related factors within 14 days of death from the last administration of SACT. Age (ORs 0.412), ECOG-PS (ORs 11.533), primary cancer site of upper GI cancers (ORs 2.205), the number of comorbidities (ORs 0.207), MTAs (ORs 3.139), and ICIs (ORs 3.592) were significantly related factors within 30 days of death. The median survival time (MST) of patients with PS 3–4 was 29 days, while that of patients with both PS 0–2 was 76 days. The prevalence rate of delirium with MTAs was 17.5%, which was significantly lower than that of patients without it (31.8%). The prevalence rate of the mean dose of opioids in patients with ICIs was 97.9 mg/day, which was significantly higher than that of patients without it (44.9 mg/day).

Age, ECOG-PS, primary cancer site, the number of comorbidities, MTAs, and ICIs use were significant associated with SACT near EOL. Information on these factors may aid clinical decision making in referral to palliative care institutes.

Clinicians and parents are encouraged to have open and honest communication about end of life with children with cancer, yet there remains limited research in this area. We examined family communication and preferred forms of support among bereaved caregivers of children with cancer.

Bereaved caregivers were recruited through a closed social media group to complete an online survey providing retrospective reports of end of life communication with their child and preferences for communication support from health-care providers. The sample of 131 participants was mostly female (77.9%; n = 102) with an average age of 49.15 (SD = 8.03) years. Deceased children were of an average age of 12.42 years (SD = 6.01) and nearly 90% of children died within 5 years of diagnosis.

Most caregivers spoke with their child about their prognosis (61.8%; n = 131) and death (66.7%; n = 99). Half of children (48%; n = 125) asked about death, particularly older children (51.9% ≥12 years; p = 0.03). Asking about dying was related to having conversations about prognosis (p ≤ 0.001) and death (p ≤ 0.001). Most caregivers (71.8%; n = 94) wanted support to talk to their children. Fewer wanted providers to speak to children directly (12.2%; n = 16) or to be present while caregivers spoke to the child (19.8%; n = 26). Several themes emerged from a content analysis of open-ended responses regarding preferences for provider support.

Most caregivers discussed issues pertaining to end of life irrespective of demographic or medical factors. Qualitative themes provide insight into support desired by families to help with these difficult conversations.

The study was conducted in order to determine the relationship between spiritual well-being and self-transcendence and to identify the spiritual practices utilized by Filipino patients who are recovering from breast cancer.

A descriptive correlational study was used, and a purposive sampling technique was utilized to select the participants in the study. Data were collected using self-administered questionnaires and were analyzed using frequency, percentage, mean, standard deviation, and Pearson's r correlation.

The study revealed that the overall mean score of the spiritual index of well-being among the participants was 4.41 (±0.54), while the mean score of self-transcendence was 3.64 (±0.50). The results showed that there was a significant relationship between spirituality and self-transcendence among Filipino women with breast cancer.

Filipino women with breast cancer rely on their spirituality, which enables them to find meaning in their illness. Hence, assessing spirituality among this population group will enable nurses to provide holistic nursing care, as this can help them cope with the challenges associated with their illness.

The objective of this training project is to develop and host Interprofessional Communication courses to improve interdisciplinary communication in oncology care. The initial national course was held in a virtual format and included pre- and post-course participant data. The curriculum was developed with support from the National Cancer Institute.

A virtual two-day course was held to equip nurses, social workers, and chaplains with vital communication skills in oncology practice, so that they could return to their home institutions and teach communication skills to other healthcare professionals, with the intention of making improved communication a quality improvement goal. Fifty-two participants were selected through an application process to attend the virtual course in two-person interprofessional teams (e.g., nurse and chaplain, or social worker and nurse). The Interprofessional Communication Curriculum was based on the National Consensus Project for Quality Palliative Care's eight domains of quality palliative care. The six online modules developed by the investigators were presented in lectures, supplemented by discussion groups, role plays, and other methods of experiential learning.

Pre- and post-course results identified areas of communication, which are a priority for improvement by oncology clinicians. Participant goals identified specific strategies to be implemented by participants in their settings.

The need for communication training was clearly demonstrated across professions in this national training course. Participants were able to apply course content to their goals for quality improvement in cancer settings.

The purpose of this systematic review is to describe the elements of the psychological experience of pediatric oncology patients facing life-threatening situations and the corresponding care needs.

The study design is a systematic review following the PRISMA standard of qualitative, quantitative, and mixed-methods research. The review was conducted using multiple databases, including Scopus, Web of Science, PubMed, and PsycINFO. The risk of bias of the articles was evaluated with the “Critical Appraisal Skills Programme.”

A total of 21 articles met inclusion criteria. The analysis of the evidence revealed that the psychological experience involves changes in relationships, thoughts about death, emotional changes, physical symptoms, spiritual changes, and feelings of uncertainty.

The care needs identified are maintaining normality, controlling physical and psychological symptoms, and that maintaining hope is an important aspect for children. Whether or not the children want to talk about death is another important aspect that needs to be reflected upon, and it would be appropriate to consider, on an individual level, involving patients in the discussion on the diagnosis and treatment of the illness. Future research should be conducted from the children's perspective since most existing research is from the perspective of the family members or health professionals. Furthermore, it is recommended to take into account qualitative approaches that provide more detailed information on the patients’ subjectivity.

This scoping review describes the existing literature which examines the breadth of healthcare providers’ (HCP's) experiences with the provision of medical assistance in dying (MAiD).

This study employed a scoping review methodology: (1) identify research articles, (2) identify relevant studies, (3) select studies based on inclusion/exclusion criteria, (4) chart the data, and (5) summarize the results.

In total, 30 papers were identified pertaining to HCP's experiences of providing MAiD. Fifty-three percent of the papers were from Europe (n = 16) and 40% of studies were from the USA or Canada (n = 12). The most common participant populations were physicians (n = 17) and nurses (n = 12). This scoping review found that HCPs experienced a variety of emotional responses to providing or providing support to MAiD. Some HCPs experienced positive emotions through helping patients at the end of the patient's life. Still other HCPs experienced very intense and negative emotions such as immense internal moral conflict. HCPs from various professions were involved in various aspects of MAiD provision such as responding to initial requests for MAiD, supporting patients and families, nursing support during MAiD, and the administration of medications to end of life.

This review consolidates many of the experiences of HCPs in relation to the provision of MAiD. Specifically, this review elucidates many of the emotions that HCPs experience through participation in MAiD. In addition to describing the emotional experiences, this review highlights some of the roles that HCPs participate in with relation to MAiD. Finally, this review accentuates the importance of team supports and self-care for all team members in the provision of MAiD regardless of their degree of involvement.

Personal autonomy and control are major concepts for people with life-limiting conditions. Patients who express a wish to die (WTD) are often thought of wanting it because of loss of autonomy or control. The research conducted so far has not focused on personal beliefs and perspectives; and little is known about patients’ understanding of autonomy and control in this context. The aim of this review was to analyze what role autonomy and control may play in relation to the WTD expressed by people with life-limiting conditions.

A systematic integrative review was conducted. The search strategy used MeSH terms in combination with free-text searching of the EBSCO Discovery Service (which provides access to multiple academic library literature databases, including PubMed and CINAHL), as well as the large PsycINFO, Scopus, and Web of Science library literature databases from their inception until February 2019. The search was updated to January 2021.

After the screening process, 85 full texts were included for the final analysis. Twenty-seven studies, recording the experiences of 1,824 participants, were identified. The studies were conducted in Australia (n = 5), Canada (n = 5), USA (n = 5), The Netherlands (n = 3), Spain (n = 2), Sweden (n = 2), Switzerland (n = 2), Finland (n = 1), Germany (n = 1), and the UK (n = 1). Three themes were identified: (1) the presence of autonomy for the WTD, (2) the different ways in which autonomy is conceptualized, and (3) the socio-cultural context of research participants.

Despite the importance given to the concept of autonomy in the WTD discourse, only a few empirical studies have focused on personal interests. Comprehending the context is crucial because personal understandings of autonomy are shaped by socio-cultural–ethical backgrounds and these impact personal WTD attitudes.

There are many terminally ill cancer patients who are struggling with the meaning of life, but it cannot be said that their concerns are being adequately addressed.

From a series of cancer patients undergoing end-of-life care, the case of a patient, who developed incurable lung cancer and, together with his wife, lost the meaning of life and underwent meaning-centered couples psychotherapy once every two weeks to have them consider the meaning of life together, is presented.

The patient was a 70-year-old man who had been diagnosed with lung cancer and pleural dissemination 14 months earlier. The meaning-centered psychotherapy (MCP) sessions were conducted with the patient and his 70-year-old wife by a cancer nursing specialist who had received extensive training in MCP and had also received 7-year on-going supervision from a Japanese MCP-enlightened psychologist. At the same time, palliative treatment of physical distress was performed. The patient was able to discover the meaning of life as a result of MCP performed by a cancer nursing specialist for him and his spouse who had lost any notion of the meaning of life after being informed that he had terminal cancer at the time of the initial diagnosis.

Meaning-centered psychotherapy provided to terminal cancer patients by cancer nurses can help patients and their families express their gratitude, thereby achieving a good death for the bereaved family. Nurses are likely to increasingly perform MCP in the future.