Palliative sedation (PS) is an intrusive measure to relieve patients at the end of their life from otherwise untreatable symptoms. Intensive discussion of the advantages and limitations of palliative care with the patients and their relatives should precede the initiation of PS since PS is terminated by the patient’s death in most cases. Drugs for PS are usually administered intravenously. Midazolam is widely used, either alone or in combination with other substances. PS can be conducted in both inpatient and outpatient settings; however, a quality analysis comparing both modalities was missing so far.

This prospective observational study collected data from patients undergoing PS inpatient at the palliative care unit (PCU, n = 26) or outpatient at a hospice (n = 2) or at home (specialized outpatient palliative care [SAPV], n = 31) between July 2017 and June 2018. Demographical data, indications for PS, and drug protocols were analyzed. The depth of sedation according to the Richmond Agitation Sedation Scale (RASS) and the degree of satisfaction of staff members and patient’s relatives were included as parameters for quality assessment.

Patients undergoing PS at the PCU were slightly younger compared to outpatients (hospice and SAPV combined). Most patients suffered from malignant diseases, and midazolam was the backbone of sedation for inpatients and outpatients. The median depth of sedation was between +1 and −3 according to the RASS with a trend to deeper sedation prior to death. The median degree of satisfaction was “good,” scored by staff members and by patient’s relatives. Significant differences between inpatients and outpatients were not seen in protocols, depth of sedation, and degree of satisfaction.

The data support the thesis that PS is possible for inpatients and outpatients with comparable results. For choosing the best place for PS, other aspects such as patient’s and relative’s wishes, stress, and medical reasons should be considered.

Palliative sedation (PS) consists of the use of drugs to alleviate the suffering of patients with refractory symptoms, through a reduction in consciousness. The aim of this study is to describe the incidence of and indications for PS in patients treated by pediatric palliative care teams (PPCT), and the relationship between PS, the place of death, and the characteristics of the care teams.

Ambispective study with the participation of 14 PPCT working in Spain.

From January to December 2019, a total of 164 patients attended by these PPCT died. Of these, 83 (50.6%) received PS during their last 24 hours. The most frequent refractory symptoms were terminal suffering (n = 40, 48.2%), dyspnea (n = 9, 10.8%), pain (n = 8, 9.6%), and convulsive state (n = 7, 8.4%). Sedation in the last 24 hours of life was more likely if the patient died in hospital, rather than at home (62.9% vs. 33.3%, p < 0.01); if the parents had not expressed their preference regarding the place of death (69.2% vs. 45.2%, p = 0.009); and if the PPCT had less than 5 years’ experience (66.7% vs. 45.5%, p = 0.018).

PS is a real possibility in pediatric end-of-life care and relates to care planning and team expertise.

Since 2015, the Harvard Workshop on Research Methods in Supportive Oncology has trained early-career investigators in skills to develop rigorous studies in supportive oncology. This study examines workshop evaluations over time in the context of two factors: longitudinal participant feedback and a switch from in-person to virtual format during the COVID pandemic.

We examined post-workshop evaluations for participants who attended the workshop from 2015 to 2021. We qualitatively analyzed evaluation free text responses on ways in which the workshop could be improved and “other comments.” Potential areas of improvement were categorized and frequencies were compiled longitudinally. Differences in participants' ratings of the workshop and demographics between in-person and virtual formats were investigated with t-tests and Chi-square tests, respectively.

286 participants attended the workshop over 8 years. Participant ratings of the workshop remained consistently high without substantial variation across all years. Three main themes emerged from the “other comments” item: (1) sense of community; (2) passion and empowerment; and (3) value of protected time. Participants appeared to identify fewer areas for improvement over time. There were no significant differences in participant ratings or demographics between the in-person and virtual formats.

While the workshop has experienced changes over time, participant evaluations varied little. The core content and structure might have the greatest influence on participants’ experiences.

This qualitative study aimed to investigate communication about death in consultations with patients undergoing chemotherapy with no curative intent. Specifically, we examined (i) how the topic of death was approached, who raised it, in what way, and which responses were elicited, (ii) how the topic unfolded during consultations, and (iii) whether interaction patterns or distinguishing ways of communicating can be identified.

The data consisted of 134 audio-recorded follow-up consultations. A framework of sensitizing concepts was developed, and interaction patterns were looked for when death was discussed.

The subject of death and dying was most often initiated by patients, and they raised it in various ways. In most consultations, direct talk about death was initiated only once. We identified 4 interaction patterns. The most frequent consists of indirect references to death by patients, followed by a direct mention of the death of a loved one, and a statement of the oncologists aiming to skip the subject.

Patients and oncologists have multiple ways of raising, pursuing, addressing and evacuating the subject of death. Being attentive and recognizing these ways and associated interaction patterns can help oncologists to think and elaborate on this topic and to facilitate discussions.

A resurgence of research investigating the administration of psychedelic compounds alongside psychotherapy suggests that this treatment is a promising intervention for anxiety, depression, and existential distress in people with cancer. However, psychedelic treatment that induces a mind-altering experience potentially poses barriers to vulnerable cancer patients, and health-care practitioners may have concerns about referring their patients to trials investigating this approach. The aim of the current study was to investigate the perceptions of cancer health-care practitioners based in New Zealand and the USA related to psychedelic-assisted therapy.

This study utilized a cross-sectional survey of cancer health-care practitioners in New Zealand and the USA via convenience sampling to identify their perceptions about the concept of conducting psychedelic-assisted therapy with cancer patients.

Participants perceived that (1) psychedelic-assisted therapy has the potential to provide benefit for cancer patients, (2) research in this area across a variety of domains is important, (3) work should consider spiritual and indigenous perspectives of health, and (4) there was willingness to refer patients to trials in this area, especially patients with advanced disease who were no longer going through curative treatment. Participants in the USA had greater awareness of psychedelics than the New Zealand sample; however, New Zealand participants more strongly believed that spiritual/indigenous factors should be considered in psychedelic-assisted therapy.

Cancer health-care practitioners in our sample considered research investigating the potential for psychedelic-assisted therapies to be important and may be more open to studies that start in palliative and end-of-life contexts.

Voluntary assisted dying (VAD) was legalized in Victoria, Australia, in June 2019. Victoria was the first jurisdiction in the world to require doctors to undertake training before providing VAD. This study examines data from doctors who completed the mandatory training in the first 2 years of the VAD system's operation (up to 30 June 2021). It describes the doctors who are undertaking VAD training, their post-training attitudes toward VAD participation, and their experiences of the mandatory training.

Through the online training, doctors completed a short demographic survey and undertook formal assessment of knowledge (90% pass mark). They also were invited to complete an optional survey evaluating the training.

In total, 289 doctors passed the training, most commonly males (56%) aged 36–65 years (82%) from an urban location (72%). Most were more than 10 years post fellowship (68%) and practising as general practitioners (51%) or medical oncologists (16%). The training most commonly took 6 h (range 2 h to over 9 h). Most doctors passed the assessment at the first (65%) or second (19%) attempt. Almost all participants (97%) found the training helpful or very helpful and most reported being confident or very confident in their knowledge (93%) and application (88%) of the VAD legislation.

Doctors reported the training was helpful and improved their confidence in knowing the law and applying it in clinical practice. The profile of trained doctors (particularly their location and specialty) suggests continued growth of participating doctors is needed to facilitate patient access to VAD. It is important that this safeguard does not discourage doctors’ participation.

Despite the potential benefits of open communication about possible desires to die for patients receiving palliative care, health professionals tend to avoid such conversations and often interpret desires to die as requests for medical aid in dying. After implementing trainings to foster an open, proactive approach toward desire to die, we requested trained health professionals to lead and document desire to die-conversations with their patients. In this article, we explore how trained health professionals experience an open (proactive) approach to desire to die-conversations with their patients.

Between April 2018 and March 2020, health professionals recorded their conversation-experiences on documentation sheets by answering seven open questions. A subsample was invited to offer deeper insights through semi-structured qualitative interviews. Interviews and documentation sheets were transcribed verbatim and analyzed thematically, then findings from both sources were compared and synthesized.

Overall, N = 29 trained health professionals documented N = 81 open desire to die-conversations. A subsample of n = 13 health professionals participated in qualitative interviews. Desire to die-conversations after the training were reported as a complex but overall enriching experience, illustrated in seven themes: (1) beneficial (e.g., establishing good rapport) and (2) hindering aspects (e.g., patients’ emotional barriers) of desire to die-conversations, (3) follow-up measures, (4) ways of addressing desire to die, as well as (5) patient reactions to it. The interviews offered space for health professionals to talk about (6) content of desire to die-conversation and (7) (self-)reflection (e.g., on patients’ biographies or own performance).

As part of an open (proactive) approach, desire to die-conversations hold potential for health professionals’ (self-)reflection and a deeper understanding of patient background and needs. They may lead to a strengthened health professional–patient relationship and potentially prevent suicide.

The absence of a specific tool to evaluate the impact of supportive care in general and socioesthetics (SE) in particular is undoubtedly at the origin of the lack of published research based on scientific standards.

We developed a supportive-care, patient-reported outcome questionnaire using the multistep methods, following COSMIN recommendations.

The Patient Centricity Questionnaire (PCQ) was developed using the standardized methodology for designing patient-reported outcome (PRO) questionnaires according to the following steps: elaboration of the questionnaire, measurement properties of the questionnaire, internal and external validation, test–retest validation and translation, cross-cultural adaptation, and cognitive debriefing. A multidisciplinary work group was designed including professionals, such as physicians, public health experts, sociologists, supportive-care experts, and socioestheticians.

Our questionnaire includes 11 items. It is scored by adding each Visual Analogue Scale [VAS], making it range from 0 to 110, with a higher benefit when the score is higher. The Cronbach's α coefficient is 0.88 for the entire questionnaire. As the questionnaire is a reflection of the patient's feelings, it is quite natural that the name “Patient Centricity Questionnaire” (PCQ) was retained and validated by the Scientific Committee. The PCQ correlated negatively and moderately with the Perceived Stress Scale [PSS], positively and moderately with the mental dimension of the Short Form-12, and poorly with the Well Beng 12 [WB12], the physical dimension of the SF-12, and the satisfaction VAS.

Constructed according to the recommendations, the PCQ meets the prerequisite for this type of questionnaire. Its short format and simplicity of use allow it to be used by a large number of people. The PCQ is a simple, reliable, easy-to-use, and validated tool for research teams, making it possible for randomized studies to prove the impact of supportive care in general and SE in particular, on the patient's quality of life.

Assessment of the psychometric characteristics of the Greek version of the brief World Health Organization Quality of Life Instrument (WHOQOL-BREF) in patients with advanced cancer and pain, and exploration of the association between psychological distress and quality of life (QoL).

The sample consisted of 145 patients with advanced cancer and pain who completed the WHOQOL-BREF, the Symptom Checklist-90 (SCL-90), and the Pain Visual Analogue Scale (VAS). In analysis, the following methods were used: Cronbach's alpha, Item Response Theory (IRT), polychoric, Pearson and polyserial correlation, t-test, and Linear regression.

The internal consistency was high for all domains of the WHOQOL-BREF (Cronbach's α ≥ 0.731). Similarly, with the exception of three items, the WHOQOL-BREF items has large discrimination parameters suggesting that they have a high ability in differentiating subjects. On SCL-90, the three dimensions with the highest scores were Depression, Somatization, and Anxiety. The overall score for psychological distress, the Global Severity Index (GSI), showed significant negative association with all the WHOQOL-BREF factor scores (Physical Health: B = −1.488, p < 0.001, Psychological Health: B = −1.688, p < 0.001, Social Relationships: B = −0.910, p < 0.001, Environment: B = −1.064, p < 0.001). Male gender was associated with lower scores for Social Relationships (B = −0.358, p = 0.007) and Environment (B = −0.293, p = 0.026).

The Greek version of the WHOQOL-BREF showed good psychometric properties in patients with advanced cancer and can be used as a reliable instrument in clinical practice. The level of psychological distress can be considered a determinant of QoL in patients with advanced cancer and pain, independently of pain intensity or other clinical characteristics. In cancer, the disease process can activate multiple physiological and psychological mechanisms that lead to a wide range of symptoms of psychological distress. To improve their QoL, psychological intervention focused on the identification and alleviation of psychological distress in patients with advanced cancer, and help in finding meaning in their experience, should be provided.

Although demoralization is common among palliative care patients, it has not yet been examined empirically in the Hong Kong Chinese context. This study aims to examine (1) the prevalence of demoralization among community-dwelling palliative care patients in Hong Kong; (2) the percentage of palliative care patients who are demoralized but not depressed and vice versa; and (3) the association of socio-demographic factors, particularly family support, with demoralization.

A cross-sectional study targeting community-living palliative care patients in Hong Kong was conducted. A total of 54 patients were recruited by a local hospice and interviewed for completing a questionnaire which included measures of demoralization, depression, perceived family support, and demographic information.

The prevalence of demoralization was 64.8%. Although there was overlap between demoralization and depression (52.8% meeting the criteria of both), 7.5% of depressed patients were not demoralized, and 13.2% of demoralized patients were not depressed. Participants who were not single and had more depressive symptoms and less family support had a significantly higher demoralization level.

This is the first study which reports the prevalence of demoralization in Hong Kong. Demoralization was found common in community-living palliative care patients receiving medical social work services in Hong Kong. This study provides evidence of the importance of differentiating the constructs between demoralization and depression. It also provides an implication that those who are married, more depressed, and have the least family support could be the most vulnerable group at risk of demoralization. We recommend that early assessment of demoralization among palliative care patients be considered.

The purposes of this study were to describe and compare the spiritual needs and spiritual well-being among terminally ill patients receiving care in different palliative care settings and to investigate the differences in spiritual well-being in relation to the level of Buddhist practices.

A cross-sectional multicenter study was carried out that included community/home-based care (Home), a faith-based organization for patients with AIDS (FB_AIDS), a faith-based organization for patients with cancer (FB_CA), and a hospice ward (Hospice). Descriptive statistics were used to analyze the participants’ demographics, Buddhist practices, spiritual needs, and spiritual well-being. The analysis was performed using analysis of variance and Kruskal–Wallis tests to compare the spiritual needs and the spiritual well-being in the different settings. The Kruskal–Wallis test was used to investigate the differences in spiritual well-being in relation to the level of Buddhist practices.

A total of 170 patients with a terminal illness (30 Home, 33 FB_AIDS, 64 FB_CA, and 43 Hospice) participated. Patients with a terminal illness receiving care at the FB_CA and Home had significantly higher mean scores for spiritual needs than those in the other settings. Patients with a terminal illness receiving care at the FB_CA had a significantly higher mean score for spiritual well-being than those receiving care in the other settings. Participants having a higher frequency of Buddhist practice had significantly higher mean scores for spiritual well-being.

Spiritual needs and spiritual well-being differed significantly among participants in different palliative care settings. The more the patients engaged in Buddhist practices, the higher their scores were for spiritual well-being. Thus, religious-based strategies should be integrated into palliative care and should be more emphasized.

Patients with cancer often have unmet needs (e.g., physical, psychosocial, and emotional) during their cancer journey, putting them at risk for distress. This study aimed to identify factors associated with distress and to investigate the association between distress and acute health-care services utilization in a cohort of breast and gynecological cancer patients across different survivorship stages.

This was a retrospective cohort study of patients who visited National Cancer Centre Singapore between September 2019 and July 2020. Distress was evaluated using the self-reported Distress Thermometer and Problem List, with a distress thermometer score ≥4 signifying high distress. Data were extracted from electronic medical records. Multivariable logistic regression was used to identify demographic or clinical variables associated with distress and estimate the odds of emergency department (ED) visits and hospitalizations within 30 days of distress screening, adjusted for covariates.

Of the 1386 patients included in the analysis, 510 (36.8%) reported high distress on their first distress screening. Variables associated with high distress included younger age, presence of psychiatric diagnosis, poorer Eastern Cooperative Oncology Group performance status, and shorter duration from cancer diagnosis to distress screening. Patients with high distress were associated with higher odds of ED visits (adjusted odds ratio [OR] = 2.25, 95% confidence interval [CI]: 1.14–4.43) and hospitalizations (adjusted OR = 2.11, 95% CI: 1.27–3.50) within 30 days of distress screening.

Self-reported high distress was associated with higher odds of increased acute health-care services utilization (ED visits and hospitalizations) in patients with breast and gynecological cancer. Identifying the subgroups at risk of high distress could trigger early interventions that reduce unplanned health-care services utilization and possibly health-care costs.

To improve psychosocial care for oncology inpatients, we implemented screening for distress by means of distress thermometer (DT) at the Comprehensive Cancer Centre Zurich in 2011. Since then, several screening barriers have been reported regarding the application of the DT. This study aimed to evaluate the distress screening process between 2012 and 2016 to identify barriers preventing sustainability.

In this sequential explanatory mixed methods study, we synthesized the results of 2 quantitative retrospective descriptive studies and 1 qualitative focus group study. To compare and analyze the data, we used thematic triangulation.

Nurses screened 32% (N = 7034) of all newly admitted inpatients with the DT, and 47% of the screenings showed a distress level ≥5. Of these cases, 9.7% were referred to psycho-oncological services and 44.7% to social services. In 15.7% of these cases, nurses generated a psychosocial nursing diagnosis. In focus group interviews, nurses attributed the low screening rate to the following barriers: adaptation to patients’ individual needs, patient-related barriers and resistance, timing, communication challenges, established referral practice, and lack of integration in the nursing process.

To improve distress screening performance, the screening process should be tailored to patients’ needs and to nurses’ working conditions (e.g., timing, knowledge, and setting-specific factors). To gain more evidence on distress management as a basis for practical improvements, further evaluations of distress screening are required.

Although psychological distress in palliative patients has at least an equal or greater impact on the quality of life compared to physical or spiritual distress, there is limited research on contextual factors associated with psychosocial intervention accessibility and relevance. This is the first published study to explore patients’ views on psychosocial intervention delivery medium preferences, key biopsychosocial target domains, and well-being priorities during the palliative and end-of-life (EOL) phases.

Eighty-one palliative patients from a Specialist Palliative Care Service completed a questionnaire, which collected quantitative and qualitative data on preferred mediums for receiving psychosocial interventions, priority biopsychosocial target domains, and well-being priorities during the palliative and EOL phases.

Results showed that an individual in-person was the most preferred medium for receiving psychosocial interventions. Improving quality of life, distressing emotions, and adjusting to the palliative care context were the 3 most frequently endorsed biopsychosocial target domains. Valued living and comfortable living were the key priority well-being themes for the palliative phase, whereas being surrounded by loved ones and comfortable and dignified dying were the priority well-being themes for the EOL phase.

Findings highlight psychosocial interventions as an essential part of a holistic approach to patient-centered care throughout both the palliative and the EOL phases. Results can inform the refinement of existing and the development of new psychosocial interventions, particularly those that target emotional distress, adjustment, and quality of life. Furthermore, in-person treatment delivery remains essential in an evolving digital world.

Psychoeducational interventions for family caregivers have shown to be effective but not possible for all caregivers to attend; thus, web-based interventions may be a complement. This study aimed to evaluate feasibility of a web-based intervention, “narstaende.se,” from the perspective of spouses of patients receiving specialized home care.

A website was developed, containing videos with conversations between health-care professionals and family caregivers (actors), informative texts, links to further information, and a chat forum. The aim of the website is to provide support and promote preparedness for caregiving and death, and the content is theoretically and empirically grounded. The study had a descriptive cross-sectional design. Altogether, 26 spouses answered a questionnaire, before accessing the website, and 4 weeks after this, 12 spouses were interviewed. Descriptive statistics and qualitative content analysis were used.

Spouses experienced the website as being easy to use, welcoming, and with relevant content. Participating spouses would recommend “narstaende.se” to others in similar situations, and the majority found the website introduced timely. Videos seemed easily accessible and were most used, contributing to a feeling of recognition and sharing the situation. The online format was perceived as flexible, but still not all spouses visited the website, stating the desire for support in real life.

A web-based intervention can be feasible for spouses in specialized home care; however, the digital format is not suitable for everyone. Further research is needed to determine the website’s potential to provide support and increase preparedness for family caregivers in general.

To provide appropriate palliative care, nurses should have appropriate level of self-efficacy in palliative care, but the levels among nurses were low. To improve the levels effectively, self-efficacy in palliative care should be assessed using reliable and valid instruments. The purpose of this study was to examine the reliability and validity of the Self-Efficacy in Palliative Care Scale in Korean nurses.

In this cross-sectional, observational study, 272 nurses (mean age: 30 years) were enrolled from 6 university-affiliated medical centers or community hospitals in South Korea. Data on self-efficacy and demographic characteristics were collected. Validity was assessed by exploratory and confirmatory factor analyses (SPSS and Mplus). Reliability and homogeneity were assessed by Cronbach’s alpha and item analyses (SPSS), respectively.

The exploratory and confirmatory factor analyses supported the 4-factor structure (communication, assessment and symptom management, psychosocial and spiritual management of patient and family, and multiprofessional teamworking) with factor loadings >.60 and with good model fit: root mean square error of approximation =.07, Tucker–Lewis index =.94, comparative fit index =.95, and standardized root mean square residual =.04. Cronbach’s alphas for the total scale and each of the subscales ranged from .883 to .965. The corrected item–total correlation coefficients of all items ranged from .61 to .90.

The findings of this study supported the reliability and validity of this instrument among Korean nurses. This instrument can be used to assess nurses’ self-efficacy in palliative care and to test intervention effects on it.

Caregiving for family members at their end of life is stressful. Caregivers’ strain, burden, or stress has been measured in various geographical and sociodemographic contexts. The concept of stress, burden, and strain are sometimes used interchangeably. By analysing the factor structure of the Chinese version of the Modified Caregiver Strain Index (C-M-CSI), this study aimed to examine the caregiving strain concept and its demographic correlates.

A sample of 453 family caregivers of patients with a terminal illness in Hong Kong was employed. Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) were performed. In addition, generalized linear models (GLM) were used to examine the demographic correlates.

The EFA yielded a 3-factor model termed “Perception of Caregiving,” “Empathetic Strain,” and “Adjustment Demand.” This 3-factor model explained 50% of the variance and showed good internal consistency. The CFA confirmed the 3-factor construct with satisfactory internal reliability (χ2 [61, N = 226] = 108.86, p < 0.001, CFI = 0.96, TLI = 0.95, SRMR = 0.04, and RMSEA = 0.06). Inspired by this factor structure and concepts of stress and strain from engineering discipline, a new model of caregiver strain is proposed. Additionally, family caregivers of non-cancer patients, who were not living with the patient, or younger were associated negatively with different dimensions of caregiver strain.

The results gave insights into the advancement of the conceptualization of caregiver strain, its multidimensional nature, and process of change, which inform directions for future research and practices.

Caregivers of children with medical complexity (CMC) face decisions about life-sustaining interventions, such as tracheostomy. Our objective is to describe the support needs of caregivers of CMC and the resources they use surrounding tracheostomy decision-making (TDM) for their children.

This qualitative study, conducted between 2013 and 2015, consisted of semi-structured interviews with 56 caregivers of 41 CMC who had tracheostomies, and 5 focus groups of 33 clinicians at a tertiary care children's hospital. Participants were asked about their perspectives on the TDM process. Qualitative data were transcribed, coded, and organized into themes.

Caregivers used five domains of resources surrounding TDM: (1) social network including extended family members, friends, and clergy; (2) healthcare providers including physicians and nurses; (3) other parents of children with tracheostomy; (4) tangible materials such as print materials, videos, tracheostomy tubes, mannequins, and simulation labs; and (5) internet including websites, social media, and online health communities. Caregivers used these resources for (1) decision-making, (2) becoming knowledgeable and skillful about child's diagnosis, tracheostomy, and home care, and (3) emotional and spiritual well-being. Caregivers agreed that they received enough support, but there were gaps. Clinicians were knowledgeable about these resources, discussed social network and internet less often than the other domains, and identified gaps in supporting caregivers.

Caregivers’ need for support and use of resources surrounding tracheostomy placement for CMC extended beyond decision-making, and included becoming knowledgeable and getting emotional/spiritual support. Healthcare providers exploring these resources with caregivers could improve the quality of TDM communication.