Many patients with advanced cancer identify home as being their preferred place of death. A critical component in achieving a home death is the support of family members, who often take on responsibilities for which they feel insufficiently prepared with subsequent impacts upon their health and well-being.

This study sought to review existing qualitative literature on family carers’ experiences in providing end-of-life care at home for patients with advanced cancer, with an emphasis on exploring factors that influence how prepared they feel for their role.

A narrative review was chosen to provide an overview and analysis of qualitative findings. MEDLINE, PubMed, PsychINFO, and EMBASE databases were searched with the following search terms: “Cancer,” “Caregiver,” “End of Life Care,” “Home,” and “Qualitative.” Inclusion criteria were as follows: English language, empirical studies, adult carers, and articles published between 2011 and 2021. Data were abstracted, and study quality was assessed using the Critical Appraisal Skills Programme checklist for qualitative research.

Fourteen relevant articles were included. Three overarching themes reflecting the factors influencing family preparedness for their role were identified: “motivations for providing care,” “interactions with health-care professionals,” and “changes during the caring process.”

Inadequate preparation of family carers is apparent with regard to their role in providing end-of-life care at home for patients with advanced cancer. There is a need for health-care workers to more effectively identify the information and support needs of families, and utilize evidence-based strategies that have emerged to address these needs.

The aim of this study was to clarify, using a nationwide survey, what is perceived as necessary knowledge and skills for psychologists involved in cancer palliative care in Japan, the expectations of medical staff members, and the degree to which these expectations are met.

We conducted a questionnaire survey of psychologists involved in cancer palliative care. A total of 419 psychologists from 403 facilities were asked to fill out the questionnaire and return it anonymously. Some 401 psychologists (89 males, 310 females, and 2 unspecified; mean age, 37.2  ±  9.5 years) responded about necessary knowledge and skills for psychologists working in cancer palliative care, the necessity for training, expectations at their current workplace, and the degree to which expectations are met.

More than 90% of participants responded that many kinds of knowledge and skills related to the field of cancer palliative care are necessary. Over 80% of participants indicated a necessity for training related to these knowledge and skills. Although more than 50% (range, 50.1–85.8%) of participants responded that such services as “cooperation with medical staff within a hospital,” “handling patients for whom psychological support would be beneficial,” and “assessment of patients' mental state” were expected at their workplace, fewer than 60% (31.4–56.9%) responded that they actually performed these roles.

Our results show that many psychologists in cancer palliative care feel unable to respond to the expectations at their current workplace and that they require more adequate knowledge and skills related to cancer palliative care to work effectively. No other nationwide surveys have generated this type of information in Japan, so we believe that the results of our study are uniquely important.

Researchers sought to determine the extent to which burden related to patients' symptom subtypes could predict informal hospice caregiver depression, and to illustrate the differences between caregivers who experience suicidal ideation and those who do not.

Informal caregivers recruited from a not-for-profit community-based hospice agency participated in a cross-sectional survey. Self-report questionnaires assessed caregiver burden associated with patient symptomatology (via a modified version of the Memorial Symptom Assessment Scale–Short Form) and caregiver depressive symptoms, including suicidal ideation (measured by the Patient Health Questionnaire–9). Multiple regressions evaluated the unique predictability of patients' symptom subtypes on caregiver depression. Exploratory analyses examined mean differences of study variables between participants who did and did not endorse suicidal ideation.

Caregiver burden related to patients' psychological symptoms accounted for significant variance in caregiver depression scores when controlling for burden related to physical symptoms. Among 229 caregivers (M age = 61.4 years), 12 reported suicidal ideation, where 6 of the 12 were male, despite male caregivers comprising less than 20% of the total sample.

Burden associated with patients' psychological symptoms uniquely contributed to caregiver depression, further highlighting the clinical utility and necessity for hospice providers to address the emotional needs of patients and their caregivers alike. Developing clinical procedures to identify and respond to such needs would not only behoove hospice agencies, but it would likely enhance the caregiving experience holistically, which might be particularly imperative for male caregivers.

This investigation sought to systematically identify and characterize a cohort of patients treated in hospice for life-limiting injuries sustained in a suicide attempt that was not immediately lethal.

We developed a case series of all completed suicides in a large, community-based hospice, from 2004 through 2010. Clinical documentation and county medical examiner reports were used to identify those deaths that resulted from a suicide attempt made prior to hospice admission. Cases were characterized in terms of basic demographic variables, the temporal sequence of events in the transition from hospital care to hospice, the mechanism of injury and medical complications, the presence of mental illness, and family involvement in decision making.

Out of a total of 20,887 hospice deaths during the study period, 8 deaths resulted from an incomplete suicide attempt made prior to hospice admission. Subjects were nearly all male (6/8), and 46 years old on average; substantially younger than the general hospice population. Drug overdose was the most common method of suicide (5/8), and irreversible anoxic brain injury was the main medical complication. The majority of subjects (6/8) had evidence of serious mental illness. Most cases were complicated by estranged family relationships; however, family members were involved in end-of-life decision making for nearly all patients.

Whereas a failed suicide attempt leading to hospice appears to be a relatively rare event, patients in this population appear unique in several regards. Further study may serve to better characterize this group and prepare hospice agencies and clinicians for caring for this unique population.

Identification of areas that family members consider important and in which they need help and support is one of the main goals of palliative care. Our research aimed to assess the psychometric properties of a Czech version of the Family Inventory of Needs (FIN).

The group comprised 272 family members of terminally ill cancer patients at the University Hospital in Ostrava. Reliability was assessed by internal consistency (Cronbach's alpha), test–retest reliability, and correlation of both scales and items within the scales (item–total correlation). To verify construct validity, exploratory factor analysis and principal component analysis with a varimax rotation were utilized.

Using exploratory factor analysis, the following four factors (domains) were extracted: basic information, information on treatment and care, support, and comfort of the patient. Cronbach's α for the entire questionnaire was 0.924 on the importance scale and 0.912 for the satisfaction scale; for all domains, a value of α greater than 0.7 was ascertained. Test–retest reliability was also higher than 0.7 for all domains. On the satisfaction scale, a moderate correlation was confirmed between unmet needs in the domains basic information, support, and comfort of the patient, and the total score, and in selected quality-of-life domains.

The results of tests on the psychometric properties of the FIN questionnaire demonstrated at least satisfactory validity and reliability, and confirmed that it can be employed to assess the needs of palliative care patients in the Czech Republic.

The aims of this systematic review were to examine the effects of the overall and the different types of the interventions on the do-not-resuscitate (DNR) designation and the time between DNR and death among cancer patients.

Data were searched from the databases of PubMed, CINAHL, EMbase, Medline, and Cochrane Library through 2 November 2017. Studies were eligible for inclusion if they were (1) randomized control trails, quasi-experimental study, and retrospective observational studies and (2) used outcome indicators of DNR designation rates. The Effective Public Health Practice Project tool was used to assess the overall quality of the included studies.

The 14 studies with a total of 7,180 participants were included in this review. There were 78.6% (11 of 14) studies that indicated that the interventions could improve the DNR designation rates. Three types of DNR interventions were identified in this review: palliative care unit service, palliative consultation services, and patient-physician communication program. The significant increases of the time between DNR designation and death only occurred in a patient-physician communication program.

The palliative care unit service provided a continuing care model to reduce unnecessary utilization of healthcare service. The palliative consultation service is a new care model to meet the needs of cancer patients in non-palliative care unit. The share decision-making communication program and physician's compassion attitudes facilitate to make DNR decision early. The individualized DNR program needs to be developed according to the needs of cancer patients.

To develop a new caregiver-assisted pain coping skills training protocol specifically tailored for community-dwelling persons with cognitive impairment and pain, and assess its feasibility and acceptability.

In Phase I, we conducted interviews with 10 patient–caregiver dyads to gather feedback about intervention content and delivery. Phase II was a single-arm pilot test to evaluate the intervention's feasibility and acceptability. Dyads in the pilot study (n = 11) completed baseline surveys, received five intervention sessions, and then completed post-intervention surveys. Analyses focused on feasibility and acceptability.

Dyads responded positively to the pain coping skills presented in the interviews; their feedback was used to refine the intervention. Findings from the pilot study suggested that the intervention was feasible and acceptable. 69% of eligible dyads consented, 82% completed all five intervention sessions, and 100% completed the post-treatment assessment. Caregivers reported high satisfaction ratings. They also reported using the pain coping skills on a regular basis, and that they found most of the skills helpful and easy to use.

These preliminary findings suggest that a caregiver-assisted pain coping skills intervention is feasible and acceptable, and that it may be a promising approach to managing pain in patients with cognitive impairment.

One of the most important goals of palliative care is achieving a good death. Most Japanese believe that “having some pleasure in daily life” is necessary at the end of life. The aim of this study was to identify, from the perspective of physicians and nurses, a care strategy that ensures that cancer patients have pleasure in daily life at the end of life.

We conducted semistructured interviews with experts in palliative care units. A total of 45 participants included 22 palliative care physicians and 23 nurses. Transcripts of the interviews were analyzed using a content analysis method.

Care for end-of-life cancer patients that ensures they have some pleasure in daily life was classified into five categories: “Pain assessment and pain easing” aimed to offer physical and psychological pain assessment and relief. “Maintenance of recuperative environment” aimed to offer care that arranged for assistive devices and equipment in the patient's room. “Support of daily life” aimed to offer care that eased accomplishment of daily activities. “Care that respects individuality” aimed to offer care that assessed sources of pleasure for the patient. “Events and complementary and alternative therapies” aimed to offer such care as aromatherapy and massage.

The elements of care identified in this study are useful for all end-of-life cancer patients, even those who do not enter palliative care units. The next step of research is to test the efficacy of interventions that reflect the five identified categories of care for end-of life cancer patients.

The primary objective of this study was to co-design and conduct a pilot evaluation of a novel, immersive virtual reality (VR) experience for procedural pain and anxiety in an Australian healthcare setting. The secondary objective was to identify key parameters that can facilitate the development and implementation of VR experiences in clinical practice.

A qualitative, Design Box method was selected for co-design. It was used with adult burns survivors and adolescents and young adults (AYAs) with cancer, and healthcare professionals from these fields to identify the practical and design parameters required for the application of VR technology within the clinical setting. Results informed the development of the VR experience that was evaluated by consumers and healthcare professionals, who completed qualitative surveys. Thematic analysis was conducted on co-design notes and survey data.

Procedural pain and management was a challenge for both cohorts, but particularly the burns cohort. Anxiety was significant challenge for both cohorts. Boredom and quality of life was a significant challenge, particularly for the AYA oncology cohort. These results informed the development of “A Wanderers Tale,” an Australiana-themed, gaze-controlled VR application for Oculus Quest platforms. Thematic analysis results suggest that cultural preferences, procedural contexts of use, and agency through customization and interaction are three parameters to consider when creating or selecting VR experiences for application in health.

This work describes a novel method for the use VR as an adjuvant pain management tool in patients with burns and cancer. The VR experience may provide a culturally, practice and procedure-appropriate tool in comparable settings of care. The study also describes interdisciplinary co-design and evaluation approaches that can help maximize the use of VR to improve healthcare approaches that address clinical challenges in pain, anxiety, and quality of life for patients while in hospital.

Cancer is one of the biggest health challenges of our times, affecting all the personal areas of a patient. The interrelationships between these areas and the need for multidisciplinary care require the assessment of psychosocial complexity in cancer patients. The main aim of this study was to reach a consensus on the general definition of psychosocial complexity in cancer and its main elements according to the experts in the field.

A Delphi study was performed, which first involved a comprehensive review of the literature to create a questionnaire that was validated by two expert panels. The first panel consisted of intra-institutional experts, while the second included extra-institutional experts in the field. The study included three more rounds: (1) validation of the questionnaire by the internal panel, (2) discussion of the results and resolving discrepancies, and (3) validation of the questionnaire by the external panel.

After the four-round Delphi process, we obtained a consensus definition of psychosocial complexity in cancer patients, as well as of its main factors: medical–physical, social-family, psychological, and spiritual. A 21-indicators list and its 8-indicators brief version were also proposed as indicators of psychosocial complexity.

We present a definition of psychosocial complexity in cancer patients that has been agreed by experts, also establishing its four factors: medical–physical, social-family, psychological, and spiritual. This has led to the development of a list of indicators (and its brief version) that, after a validation process, could help health professionals to identify patients with high psychosocial complexity to provide them an optimal care.

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.

Our aims were to report an analysis of the concept of cultural competency and to explore how the cultural competency of the palliative care workforce impacts the holistic care of young people with palliative care needs from South Asian cultures.

Using keywords, we searched the online databases MEDLINE, CINAHL, ScienceDirect, and PubMed from January of 1990 through to December of 2016. Some 1543 articles were retrieved, and inclusion and exclusion criteria were applied. A total of 38 papers were included in the concept analysis. The data were analyzed using Coad's (2002) adapted framework based on Rodgers's (1989) evolutionary concept analysis, focusing on the attributes, antecedents, consequences, and related terms in relation to culturally competent care. A model case of culturally competent care was also constructed.

The literature provides evidence that the concept of culturally competent care is a complex one, which is often expressed ambiguously. In addition, there is a paucity of research that involves service users as experts in defining their own needs and assessing their experiences related to cultural care.

Cultural care should be integral to holistic patient care, irrespective of a person's race or ethnicity. There is an urgent need to involve young BAME patients with palliative care needs and their families in the development of a robust tool to assess cultural competency in clinical practice.

It has been reported that akathisia is a neurological side effect induced by antiemetic drugs and/or antipsychotics. Akathisia can occur in any area of the body, but respiratory akathisia is an unusual type of akathisia. Cases of respiratory akathisia in cancer patients taking antiemetic drugs have not previously been reported.

We report on a case of a cancer patient taking prochlorperazine as an antiemetic drug who experienced dyspnea accompanied by severe restlessness associated with respiration. By administration of biperiden, his restlessness in respiration and dyspnea promptly disappeared.

This finding led us to conclude that this cancer patient was experiencing respiratory akathisia.

Respiratory akathisia is uncommon. It is important for cancer patients that dyspnea induced by disease progression be ruled out as a cause of the respiratory restlessness. It is necessary to consider the possibility of akathisia in patients that complain of vague anxiety, chest discomfort, or dyspnea following antipsychotic medication.

Thiamine deficiency (TD) is recognized in various kinds of disease with associated loss of appetite including cancer; however, TD has not been recognized in the family caregivers of cancer patients to date.

From a series of cancer patient caregivers, we reported an aged family caregiver who developed TD while caring for the cancer patient.

The caregiver was a 90-year-old male. He had been accompanying his wife, who was diagnosed with colon cancer 4 years previously, on hospital visits as the primary caregiver, but because of psychological issues, he was recommended to visit the psycho-oncology department's “caregiver's clinic” for a consultation. Detailed examination revealed that his appetite had been only about 50% of usual from about one year before, and he had lost 12 kg in weight in one year. The diagnosis of TD was supported by his abnormally low serum thiamine level.

This report demonstrates that there is a possibility that care providers could develop TD from the burdens associated with caregiving. TD should be considered whenever there is a loss of appetite lasting for more than 2 weeks, and medical staff should pay careful attention to the physical condition of care providers to prevent complications resulting from TD.

Palliative care (PC) is patient and family-centered supportive care intended to improve symptom management, reduce caregiver burden, coordinate care, and improve quality of life for patients diagnosed with serious illness. Optimally, PC is begun close to initial diagnosis and delivered in synchrony with disease-specific treatment until symptom relief or patient death. The purpose of this study was to examine cancer survivors’ knowledge and perceptions of PC using a nationally representative sample of US adults from the Health Information National Trends Survey (HINTS).

A total of 593 HINTS respondents reported a personal history of cancer and were included in the sample (55.56% female; mean age of 65.88 years, SD = 18.21; mean time from diagnosis 13.83 years, SD = 18.21). Weighted logistic regression models were conducted to identify correlates of PC knowledge.

Of the 593 cancer survivors in the sample, 66% (N = 378) reported that they had never heard of PC, 18% (N = 112) reported knowing a little bit about PC, and 17% (N = 95) reported knowing what PC is and could explain it to someone else. In multivariable analysis, survivors of color (Hispanic/Latino, Black, Asian, American Indian, and Pacific Islander), males, and those less educated were significantly less likely to report knowledge of PC. Among survivors who did report knowledge of PC, a lack of distinction between differing modes of supportive care exists.

These findings suggest a need to increase PC knowledge among cancer survivors with the ultimate goal of addressing disparities in PC acceptance and utilization.

There is a growing interest in the emotional state of cancer patients. The main objective of this pilot study is to assess the feasibility, acceptability, and preliminary efficacy of Meaning-Centered Psychotherapy and Essential Care (MCP-EC) in patients with advanced cancer compared with usual psychological support. We define “Essential Care” as the promotion of patient care and self-care through the recall of good care experiences and discussion of the concepts: responsibility, self-compassion, kindness, and attitude.

Pilot, single-center, and prospective study of 30 patients with advanced cancer and emotional distress. Our adaptation consisted in three session Meaning-Centered Psychotherapy-Palliative Care, plus a fourth session named “Essential Care”. The study was carried out in two phases. First, 20 patients were randomized to one of the two arms: individual MCP-EC (experimental, n = 10) or usual psychological supportive (control, n = 10). In a second phase, 10 patients were assigned consecutively to Group MCP-EC (n = 10). All patients were evaluated at baseline (pre-) and post-intervention with questionnaires for sociodemographic data and clinical scales.

Nineteen patients completed the 4 sessions of MCP-EC, 9 individual format and 10 group format. Usual supportive intervention was delivered to 10 control patients. Total 28 patients completed pre- and post-treatment evaluations. There were no pre- vs. post-differences in the evaluations of the control group. In the experimental group, significant pre- vs. post-differences were found in EQ-5D-3L, HADS, FACIT, DM, HAI, SCS-SF, and TD questionnaires. These results indicated that MCP-EC reduced anxiety and depression symptoms, hopelessness, demoralization, as well as increased spiritual well-being and sense of meaning. Participants were satisfied and found the MCP-EC intervention positively.

This pilot study suggests that the MCP-EC has feasibility, acceptability, and preliminary efficacy reducing the emotional distress in advanced cancer patients. Larger studies are warranted to clarify the strengths and limitations of this psychotherapy.

The aim of this project was to study prolonged grievers psychosocial processes and experience during participation in a group intervention and 6–8 weeks after discontinuation. The intervention in this study was a group therapy with the aim of getting in contact with their pain and loss and confronting and working with this loss.

Data was collected by using diaries and tape-recorded interviews, analyzed with grounded theory. The participants were 11 females between the ages of 33 and 71.

The main process that was found in the qualitative data was: Ambivalence when struggling and learning through work and rest towards a balance. Sub-processes were: To share and be confirmed in the group through sense of cohesion; To dare/venture to discover problems and solutions; To react when you get emotionally involved, and to compare and discover.

This study gives insight into prolonged grievers' thinking, which is valuable knowledge. Rather than assuming that all individuals suffering from prolonged grief need the same treatment, we suggest that there should be a range of different therapies.

This paper aims to explore the extent to which the “revivalist” discourse of a good death, which promotes an awareness of dying shapes the lived realities of palliative care patients and their families in Portugal.

An ethnographic approach was developed. Participant observation was carried out in 2 palliative care units, and this was complemented by in-depth interviews. Ten terminally ill patients, 20 family members, and 20 palliative care professionals were interviewed.

The “revivalist” good death script might not be suitable for all dying people, as they might not want an open awareness of dying and, thereby, the acknowledgment of imminent potential death. This might be related to cultural factors and personal circumstances. The “social embeddedness narrative” offers an alternative to the “revivalist” good death script.

The “revivalist” discourse, which calls for an open awareness of dying, is not a cultural preference in a palliative care context in Portugal, as it is not in accord with its familial nature.