Sleep disturbances are prevalent in cancer patients, especially those with advanced disease. There are few published intervention studies that address sleep issues in advanced cancer patients during the course of treatment. This study assesses the impact of a multidisciplinary quality of life (QOL) intervention on subjective sleep difficulties in patients with advanced cancer.

This randomized trial investigated the comparative effects of a multidisciplinary QOL intervention (n = 54) vs. standard care (n = 63) on sleep quality in patients with advanced cancer receiving radiation therapy as a secondary endpoint. The intervention group attended six intervention sessions, while the standard care group received informational material only. Sleep quality was assessed using the Pittsburgh Sleep Quality Index (PSQI) and Epworth Sleepiness Scale (ESS), administered at baseline and weeks 4 (post-intervention), 27, and 52.

The intervention group had a statistically significant improvement in the PSQI total score and two components of sleep quality and daytime dysfunction than the control group at week 4. At week 27, although both groups showed improvements in sleep measures from baseline, there were no statistically significant differences between groups in any of the PSQI total and component scores, or ESS. At week 52, the intervention group used less sleep medication than control patients compared to baseline (p = 0.04) and had a lower ESS score (7.6 vs. 9.3, p = 0.03).

A multidisciplinary intervention to improve QOL can also improve sleep quality of advanced cancer patients undergoing radiation therapy. Those patients who completed the intervention also reported the use of less sleep medication.

A lack of confidence among oncology nurses might be problematic when providing palliative care. No valid and reliable tool is currently available in Saudi Arabia to assess oncology nurses’ confidence in providing palliative care. This study aims to explain the process of translation, adaptation, and validation of the Palliative Care Self-Efficacy Scale (PCSS) to support its use in the Saudi context.

This was a methodological study of translation, cultural adaptation, and content validation of PCSS. The process of translation and adaptation was conducted according to the World Health Organization guidelines, including forward and backward translations, an expert panel review, and pretesting and cognitive interviewing, resulting in a final version. Two independent bilingual oncology nurses familiar with palliative care terminology translated the PCSS from English to Modern Standard Arabic. Next, the concise PCSS translation developed from the 2 translations was back-translated to English by 2 English-speaking translators and then compared to the original PCSS. The Arabic version PCSS was evaluated by Saudi professionals (N = 5) in oncology and palliative care nursing using a Likert scale for essentiality, relevance, clarity, and appropriateness. The content validity was examined using the calculation of the content validity ratio, item-level content validity index (I-CVI), and modified kappa statistics. The thinking aloud method was also used to interview Saudi oncology nurses (N = 8) who had palliative care experience.

The relevance, clarity, and appropriateness of the first Arabic version PCSS were validated. It had a level of content validity index of 1.00 for all items after improvements were made based on the recommendations of experts and oncology nurses.

The PCSS demonstrated face and content validity in the assessment of oncology nurses’ confidence in providing palliative care. The PCSS is suitable for use in palliative cancer care units in Saudi Arabia to identify the educational needs of nurses to promote their confidence and improve the quality of care. Additional reliable and valid language versions of the PCSS allow for international and national comparisons, which may be useful for oncology nursing administrators or managers who are accountable for the quality of palliative care during the strategic health-care planning process in cancer services.

We sought to characterize patients’ preferences for the role of religious and spiritual (R&S) beliefs and practices during cancer treatment and describe the R&S resources desired by patients during the perioperative period.

A cross-sectional survey was administered to individuals who underwent cancer-directed surgery. Data on demographics and R&S beliefs/preferences were collected and analyzed.

Among 236 participants, average age was 58.8 (SD = 12.10) years; the majority were female (76.2%), white (94.1%), had a significant other or spouse (60.2%), and were breast cancer survivors (43.6%). Overall, more than one-half (55.9%) of individuals identified themselves as being religious, while others identified as only spiritual (27.9%) or neither (16.2%). Patients who identified as religious wanted R&S integrated into their care more often than patients who were only spiritual or neither (p < 0.001). Nearly half of participants (49.6%) wanted R&S resources when admitted to the hospital including the opportunity to speak with an R&S leader (e.g., rabbi; 72.1%), R&S texts (64.0%), and journaling materials (54.1%). Irrespective of R&S identification, 68.0% of patients did not want their physician to engage with them about R&S topics.

Access to R&S resources is important during cancer treatment, and incorporating R&S into cancer care may be especially important to patients that identify as religious. R&S needs should be addressed as part of the cancer care plan.

Israel serves as a case study for understanding the importance of undergraduate palliative care (PC) education in implementing, developing, and enabling access to palliative care services. This article presents the findings collected from the five medical schools.

This qualitative study supported by a survey explores and describes the state of undergraduate PC education at medical schools in Israel. The survey included questions on voluntary and mandatory courses, allocation of different course models, teaching methods, time frame, content, institutions involved, and examinations. Semi-structured interviews with teaching faculty were conducted at the same locations.

Eleven expert interviews and five surveys demonstrate that PC is taught as a mandatory subject at only two out of the five Israeli universities. To enhance PC in Israel, it needs to become a mandatory subject for all undergraduate medical students. To teach communication, cultural safety, and other basic competencies, new interactive teaching forms need to be developed and adapted. In this regard, nationwide cooperation is proposed. An exchange between medical schools and university clinics is seen as beneficial. The new generation of students is open to PC philosophy and multidimensional care provision but resources to support their growth as professionals and people remain limited.

This study underlines the importance of teaching in PC at medical schools. Undergraduate education is a central measure of PC status and should be used as such worldwide. The improvement of the teaching situation would automatically lead to a better practical implementation for the benefit of people. Medical schools should cooperate, as the formation of expertise exchange across medical schools would automatically lead to better PC education.

People with terminal illnesses often experience psychological distress and associated disability. Recent clinical trial evidence has stimulated interest in the therapeutic use of psychedelics at end of life. Much uncertainty remains, however, mainly due to methodological difficulties that beset existing trials. We conducted a scoping review of pipeline clinical trials of psychedelic treatment for depression, anxiety, and existential distress at end of life.

Proposed, registered, and ongoing trials were identified from 2 electronic databases (ClinicalTrials.gov and the World Health Organization International Clinical Trials Registry Platform). Recent reviews and both commercial and non-profit organization websites were used to identify additional unregistered trials.

In total, 25 studies were eligible, including 13 randomized controlled trials and 12 open-label trials. Three trials made attempts beyond randomization to assess expectancy and blinding effectiveness. Investigational drugs included ketamine (n = 11), psilocybin (n = 10), 3,4-methylenedioxymethamphetamine (n = 2), and lysergic acid diethylamide (n = 2). Three trials involved microdosing, and fifteen trials incorporated psychotherapy.

A variety of onging or upcoming clinical trials are expected to usefully extend evidence regarding psychedelic-assisted group therapy and microdosing in the end-of-life setting. Still needed are head-to-head comparisons of different psychedelics to identify those best suited to specific indications and clinical populations. More extensive and rigorous studies are also necessary to better control expectancy, confirm therapeutic findings and establish safety data to guide the clinical application of these novel therapies.

A model of psychosocial care specific for patients with multiple myeloma and their caregivers has not yet been proposed. We sought to develop a model of care that considers the specific profile of this disease.

The authors, representing a multidisciplinary care team, met in December of 2012 to identify a model of psychosocial care for patients with multiple myeloma and their caregivers. This model was determined by consensus during the meeting and via total agreement following the meeting. The meeting was sponsored by Onyx Pharmaceuticals.

The need for targeted psychosocial care for the multiple myeloma patient and caregiver throughout the disease process is essential to ensure quality of life and optimal treatment outcomes. We propose herein the first known model of care for the treatment of multiple myeloma that engages both the patient and their caregivers.

Innovative partnerships between psychosocial providers and other entities such as pharmaceutical companies can maximize resources for comprehensive program development. This manuscript proposes a model of care that promotes active engagement in therapies for multiple myeloma while engaging the individual patient and their family caregivers. This treatment approach must be evidence based in terms of distress screening tools, comprehensive psychosocial assessments, and, most importantly, in the interventions and measurements of response that clinicians apply to this population.

Although the Short-Term Life Review elevated the spiritual well-being of terminally ill cancer patients in our previous study, we have not examined what patients reviewed for each question item of it. We examined factors in narratives to questions in the Short-Term Life Review interviews of terminally ill cancer patients and utility of the questions.

Thirty-four terminally ill cancer patients received the Short-Term Life Review interview in which there were two sessions. In the first session patients reviewed their lives, and an interviewer made a simple album of the patient based on patients' narrative. After 1 week, there was a second session. Qualitative analysis was conducted on patients' answers to each question using computational word mining, and factors were identified.

Twenty patients' narratives were analyzed. “Human relationships” was identified under “important things in life.” “Pleasant memories” were associated with “impressive memories.” “Illness” and “marriage and divorce” were related to “turning points in the life.” “Raising children and education” and “company or work” were identified as “roles in life.” “Achievements at work” were identified with “pride.” “Message to my children” was identified with “what I want to say to my family.” “To live sincerely” and “consideration for others” were identified as “advice for the next generation.” Patients reviewed few for topics such as “pride,” “what I want to say to my family,” “advice for the next generation,” and “summing up my life.”

Factors such as human relationships, raising children, and education as a role and source of pride, and concerns about children's future, were associated with elevating spiritual well-being. Question to which that patients easily answered were selected.

The provision of emotional and psychological support for all family members who need it is an essential element of holistic palliative care. Within East Anglia's Children's Hospice, teams of professionally trained and experienced workers offer psychosocial support to all family members at all times during the child's and family's journey. However, the effectiveness and appropriateness of current psychosocial provision is unclear, as is the requirement for any additional psychological services.

The purpose of this study was to elicit perceptions about current psychological support within the hospice from a group of stakeholders (parents, hospice staff, and external professionals).

Forty-five parents participated in family focus groups, telephone interviews, individual interviews in their home, or a web-based survey. Ninety-five hospice staff (including nurses, carers, play specialists, therapists, and family support practitioners) and 28 external staff (including physicians, nurses, and commissioning managers) were seen using a mixture of focus group and individual meetings. Focus groups and meetings were held at the hospice building or at an external venue. Interviews were recorded and transcribed verbatim and analyzed using thematic coding.

Two main themes addressing perceptions of current psychological provision emerged: “understanding psychological support” and “unmet psychological need.” Subthemes linked to support included choice, staff roles and labels, communication, and flexibility, whereas the themes within unmet need had a stronger focus on people and problems.

Understanding different user perspectives is an important first step in enhancing current psychological provision; operationalizing the findings will be challenging.

Quality of life (QoL) is a multidimensional, subjective, and highly individual phenomenon. The current study speaks to the QoL domains identified by palliative patients living in Africa. The need to identify these domains has been recognized but seemed to still be lacking. This study filled this knowledge gap by providing the domains and by giving directions in terms of the assessment of QoL in palliative patients living in resource-restricted communities in South Africa.

We followed a multi-method approach and conducted a literature review to identify and describe the multidimensional QoL instruments used in African palliative care. A secondary analysis design and open-coding method was employed to identify the domains influencing the QoL of palliative patients living in a resource-restricted South African community, after which we compared these domains to the domains assessed by the identified QoL instruments.

We found that two multidimensional QoL of life instruments—the Missoula–Vitas Quality of Life Index (MVQoLI) and the Functional Assessments of Chronic Illness Therapy–Palliative Care (FACIT–Pal)—have been used in African palliative care and have identified various domains, grouped as four themes: physical concerns, psychosocial issues, financial restraints, and existential issues. The patient-identified QoL domains were to a great extent not assessed by the MVQoLI and FACIT–Pal.

Our study highlights the complexity of QoL and QoL assessment. A more accurate representation of the QoL of palliative patients living in resource-restricted communities might be obtained by using individualized measures or exploring what QoL means to these patients and selecting QoL instruments accordingly.

Our aim was to outline a procedure for obtaining a rapid autopsy in order to collect high-quality postmortem tissue for genomic analysis.

This report details a bi-institutional collaborative effort to coordinate a rapid autopsy for a pediatric patient who had died at home. We discuss the scientific rationale for offering a rapid autopsy to caregivers of pediatric patients as well as parental perspectives on broaching the subject of autopsy. We then review the logistics and coordination involved with planning a rapid autopsy and the sequence of events needed to maximize tissue quality.

We report the successful coordination of a rapid autopsy for a patient who died in a hospice setting at her out-of-state home. The time interval from death to the start of the rapid autopsy procedure was 4.5 hours, despite the logistical considerations demanded by the location of the patient. Tumor aliquots and nonneoplastic tissues were successfully snap frozen for downstream genomic studies.

Physicians should consider trialing a rapid autopsy program at their institution that could be offered to caregivers of pediatric patients. This case report offers a framework to help clinicians develop their own rapid autopsy programs as well as guidelines to help streamline this process for appropriate candidates going forward.

This study aims at investigating the current status of death literacy and parent’s death quality among adult children in China. A cross-sectional survey was conducted to explore the associations between death literacy and parent’s death quality and to provide evidence for developing public policies for improving the quality of death and end-of-life care for the population in the Greater Bay Area (GBA) of China.

A cross-sectional design was adopted. Participants who experienced their father’s and/or mother’s death were recruited from 5 cities in the GBA of China in 2022. The Good Death Inventory (GDI) and the Death Literacy Index (DLI) were used to investigate the perceived quality of death of the parents of the participants and the death literacy of the participants.

A total of 511 participants were recruited. Participants with higher GDI scores were positively associated with DLI scores (p < 0.001). Adult children who had close relationships before their parents’ death also had higher levels of DLI.

This study investigated death literacy among bereaved adult children in China, filling a gap in the investigation of death literacy among Chinese residents. It found that parents’ death experience can have a significant impact on the death literacy of adult children, which may affect their understanding and preparation for their own eventual death. Promotion of family discussion on death, development of community palliative care, and improving public death literacy are urgently needed in China.

Social anxiety disorder is one of the most popular psychiatric disorders in the general population and is also well known as a very common comorbid psychiatric disorder among patients with major depression. On the other hand, social anxiety disorder has been termed “the neglected anxiety disorder” because its diagnosis is often missed. Furthermore, the potential impact of social anxiety disorder on the psychological distress of cancer patients has not been reported.

We encountered two cancer patients with refractory depression after cancer diagnosis, in whom comorbid social anxiety disorder was unexpectedly detected during a subsequent follow-up.

To the best of our knowledge, this is the first report to discuss the potential impact of social anxiety disorder on cancer patients' distress. These two cases may help to improve our understanding of the complicated mental health problems of cancer patients and the potential influence of social anxiety disorder on patients' follow-up medical treatment.

Comorbid social anxiety disorder should be considered when a cancer patient's depression is resistant to treatment and the existence of communication problems between the patient and the medical staff is suspected.

In 2015, a Chaplaincy Research Consortium generated a model of human spirituality in the palliative care context to further chaplaincy research. This article investigates the clinical fit of (a) the model's fundamental premise of universal human spirituality and (b) its 4 proposed stage descriptors (Discovery, Dialogue, Struggle, and Arrival).

First, we collected qualitative data from an interdisciplinary palliative care focus group. Participants (n = 5) shared responses to the statement “the human spirit has essential commonalities across [ … ] groups and [ … ] attributes.” Participants also shared vignettes of spiritual care, and 48 vignettes illustrating patients’ spiritual journeys were subsequently taken from the transcript of that group. Second, we invited different mixed discipline palliative care professionals (n = 9) to individually card sort these vignettes to the model's 4 stage descriptors; we conducted pattern analysis on the results. We then administered a third step, convening six physicians to complete the card sort again, this time allowing designation of cards to one or two of the 4 stage descriptors.

Focus group participants were supportive of the model's all-encompassing definition of spirituality. The concept of “connectedness” was a shared focus for all participants, connectedness and spirituality appearing almost synonymous. Pattern analysis of assigned 48 vignettes to the 4 stages showed stronger consensus around Discovery and Arrival than Struggle and Dialogue. Results of the additional card sort suggested Struggle and Dialogue involve oscillation and are harder to think of as a steady state as distinct from processes associated with Discovery or Arrival.

“Connectedness” is a productive concept for modeling human spiritual experience near the end of life. As one healthcare professional said: “this connectedness piece is [ … ] what I always look for … ” Although further work is needed to understand struggle and dialogue elements in peoples’ spiritual journeys, discovery and arrival shared consensus among participants.

This article summarizes the findings from a 3-year independent evaluation of a regional Child Bereavement Service (CBS). The service was commissioned by a Primary Care Trust in Northern England, and funded by a British cancer charity, Macmillan Cancer Support. The need for a CBS was recognized by members of a Palliative Care Group who identified a gap in local services for bereaved children, who may be susceptible to short/long-term psychiatric/psychological disorders. The service was established to offer support for professionals working with bereaved children and their family.

Interventions provided by the service included pre/post bereavement support, individual work with the child and/or family, and group work. An evaluation (2004–2007), was conducted to inform service development utilizing semi-structured interviews with parents/carers of service users (n = 20), and semi-structured interviews with healthcare professionals (n = 8). Interviews were recorded, transcribed verbatim, and analyzed using grounded theory methods.

Referrals were higher than expected. Sixty per year were anticipated; however, in the first year alone, there were 255 referrals. Health and social care professionals who attended training courses, provided by the CBS staff, expressed confidence in providing bereavement support themselves, or by making appropriate referrals to the CBS. Parents and carers welcomed a service specifically for their children.

The CBS is a viable organization that supports bereaved children as expressed in this article.

Adjusting to cancer is an ongoing process, yet few studies explore this adjustment from a qualitative perspective. The aim of our qualitative study was to understand how patients construct their experience of adjusting to living with cancer.

Qualitative analysis was conducted of written narratives collected from four separate writing sessions as part of a larger expressive writing clinical trial with renal cell carcinoma patients. Thematic analysis and constant comparison were employed to code the primary patterns in the data into themes until thematic saturation was reached at 37 participants. A social constructivist perspective informed data interpretation.

Interconnection described the overarching theme underlying the process of adjusting to cancer and involved four interrelated themes: (1) discontinuity—feelings of disconnection and loss following diagnosis; (2) reorientation—to the reality of cancer psychologically and physically; (3) rebuilding—struggling through existential distress to reconnect; and (4) expansion—finding meaning in interconnections with others. Participants related a dialectical movement in which disruption and loss catalyzed an ongoing process of finding meaning.

Our findings suggest that adjusting to living with cancer is an ongoing, iterative, nonlinear process. The dynamic interactions between the different themes in this process describe the transformation of meaning as participants move through and revisit prior themes in response to fluctuating symptoms and medical news. It is important that clinicians recognize the dynamic and ongoing process of adjusting to cancer to support patients in addressing their unmet psychosocial needs throughout the changing illness trajectory.

The purpose of this study was to describe disrespectful, inadequate, and abusive care to seriously ill patients who identify as transgender and their partners.

A cross-sectional mixed methods study was conducted. The sample included 865 nurses, physicians, social workers, and chaplains. Respondents were asked whether they had observed disrespectful, inadequate, or abusive care due to the patient being transgender and to describe such care.

Of the 21.3% of participants who reported observing discriminatory care to a transgender patient, 85.3% had observed disrespectful care, 35.9% inadequate care, and 10.3% abusive care. Disrespectful care included insensitivity; rudeness, ridicule, and gossip by staff; not acknowledging or accepting the patient’s gender identity or expression; privacy violations; misgendering; and using the incorrect name. Inadequate care included denying, delaying, or rushing care; ignorance of appropriate medical and other care; and marginalizing or ignoring the spouse/partner.

These findings illustrate discrimination faced by seriously ill transgender patients and their spouse/partners. Providers who are disrespectful may also deliver inadequate care to transgender patients, which may result in mistrust of providers and the health-care system. Inadequate care due to a patient’s or spouse’s/partner’s gender identity is particularly serious. Dismissing spouses/partners as decision-makers or conferring with biological family members against the patient’s wishes may result in unwanted care and constitute a Health Insurance Portability and Accountability Act of 1996 (HIPAA) violation. Institutional policies and practices should be assessed to determine the degree to which they are affirming to both patients and staff, and revised if needed. Federal and state civil rights legislation protecting the LGBTQ+ community are needed, particularly given the rampant transphobic legislation and the majority of states lacking civil rights laws protecting LGBTQ+ people. Training healthcare professionals and staff to become competent and comfortable treating transgender patients is critical to providing optimal care for these seriously ill patients and their spouse/partner.