When caring for a loved one with a life-limiting illness, a caregiver's own physical, emotional, and spiritual suffering can be profound. While many interventions focus on physical and emotional well-being, few caregiver interventions address existential and spiritual needs and the meaning that caregivers ascribe to their role. To evaluate the feasibility and acceptability of the process and content of Caregiver Outlook, we employed a manualized chaplain-led intervention to improve well-being by exploring role-related meaning among caregivers of patients with a life-limiting illness.

We conducted a single-arm pre–post pilot evaluation among caregivers of patients with advanced cancer or amyotrophic lateral sclerosis (ALS). Caregivers completed three chaplain-led intervention sessions focusing on (1) a relationship review, (2) forgiveness, and (3) legacy. Outcomes administered at baseline and at 1 and 2 weeks after the intervention included quality of life, anxiety, depression, spiritual well-being, religious coping, caregiver burden, and grief.

The sample (N = 31) included a range of socioeconomic status groups, and the average age was approximately 60 years. A third of them worked full-time. Some 74% of our participants cared for a spouse or partner, and the other quarter of the sample cared for a parent (13%), child (10%), or other close family member (3%). At baseline, participants did not demonstrate clinical threshold levels of anxiety, depression, or other indicators of distress. Outcomes were stable over time. The qualitative results showed the ways in which Caregiver Outlook was assistive: stepping back from day-to-day tasks, the opportunity to process emotions, reflecting on support received, provoking thoughts and emotions between sessions, discussing role changes, stimulating communication with others, and the anonymity of a phone conversation. Both religious and nonreligious participants were pleased with administration of the chaplain intervention.

The acceptability and feasibility of Caregiver Outlook were demonstrated among caregivers of patients with an advanced illness. Our pilot findings suggest minor modifications to study participant screening, interventionist guidance, and the study measures.

Demoralization syndrome (DS) within the context of the psychological experience at the end of life is an important and relevant medical issue and remains the subject of a growing area of research.

Ours was a cross-sectional study designed to assess the prevalence and associated demographic, physical, psychiatric, and psychosocial factors for demoralization syndrome in Portuguese patients with advanced disease.

Some 80 terminally ill patients were included in the analyses over a 28-month period of time. The prevalence of DS was found to be 52.5%. No statistical differences were observed among prevalence of DS within categories of all studied variables, with the exception of depression using DSM–IV criteria (prevalence ratio PR = 1.8, CI95% = [1.18–2.74]) and desire for death (PR = 1.8, CI95% = [1.25–2.56]). In the Poisson regression analyses predicting DS, none of the latter factors emerged as significant (DSM–IV criteria: PR = 1.6, CI95% = [0.84–3.08]; and desire for death: PR = 1.5, CI95% = [0.74–2.99]). Thirty percent of participants met both criteria for demoralization syndrome and depression using the DSM–IV.

Prevalence of demoralization syndrome was high in this patient sample. Based on our results, we cannot determine if DS and depression are two distinct psychological entities. Identifying factors associated with DS could help provide efficacious interventions capable of diminishing suffering in terminally ill patients.

Our aim was to evaluate caregivers' perceptions of a video, telephone follow-up, and online forum as components of a psychoeducational intervention.

Qualitative semistructured face-to-face interviews were conducted with 12 participants two weeks post-intervention. The study was conducted from September of 2012 to May of 2015. Family caregivers were recruited from four home hospice organizations (HCA Hospice Care, Metta Hospice, Singapore Cancer Centre, and Agape Methodist Hospice) and the National Cancer Centre outpatient clinic in Singapore. A purposive sample was employed, and participants were recruited until data saturation. Qualitative interviews were transcribed verbatim. Transcripts were coded and analyzed using content analysis. Two of the research team members were involved in the data analysis.

Two-thirds of participants were females (n = 8). Their ages ranged from 22 to 67 (mean = 50.50, SD = 11.53). About two-thirds were married (n = 7). Most participants were caring for a parent (n = 10), one for a spouse, and one for her mother-in-law. Caregivers favored the use of video for delivery of educational information. They liked the visual and audio aspects of the video. The ability to identify with the caregiver and scenarios in the video helped in the learning process. They appreciated telephone follow-ups from healthcare professionals for informational and emotional support. The online forum as a platform for sharing of information and provision of support was not received well by the caregivers in this study. The reasons for this included their being busy, not being computer savvy, rarely surfing the internet, and not feeling comfortable sharing with strangers on an online platform.

This study provided insight into caregivers' perceptions of various components of a psychoeducational intervention. It also gave us a better understanding of how future psychoeducational interventions and support for caregivers of persons with advanced cancer could be provided.

Conducting research with the bereaved presents an immediate ethical challenge, as they are undoubtedly a vulnerable group, associated with high levels of distress and susceptible to both physical and mental health issues. A comprehensive understanding of the potential therapeutic benefits for bereaved relatives participating in palliative care research is limited, and therefore the ethics of engaging this group remain questionable.

This paper describes a secondary analysis of qualitative data collected in the Care of the Dying Evaluation (CODE) project, examining the experiences of patients who died at home. It explores the motivations and potential benefits for bereaved relatives participating in research with reference to the recently developed concepts in bereavement theory. Cognitive interviews were conducted with 15 bereaved relatives and secondary analysis using a content analysis framework was employed to classify the data.

The results center around six recurring concepts identified as adaptive in current bereavement theory: an opportunity to share the narrative accounts of the final hours of their relative's life; a search for sense and meaning in loss; an ongoing bond/attachment with the deceased; altruistic motivations; oscillation between loss and restorative orientations; and a sense of resilience. Overall, the participants found that taking part in the research was valuable and that it could be described as offering therapeutic benefits.

The need for bereaved relatives to take part in research studies should be encouraged, as they provide an accurate proxy for the patient's experience of end-of-life care while also providing a valuable account of their own perspective as family member and carer. In addition, we highlight the need for ethics committees to be aware of the potential benefits for bereaved relatives participating in research of this kind.

The purpose of this study was to examine siblings’ long-term psychological health in relation to their perception of communication with their family, friends, and healthcare professionals during a brother or sister's last month of life.

A nationwide questionnaire study was conducted during 2009 in Sweden of individuals who had lost a brother or sister to cancer within the previous two to nine years. Of the 240 siblings contacted, 174 (73%), participated. The Hospital Anxiety and Depression Scale (HADS) was employed to assess psychological health (anxiety). The data are presented as proportions (%) and relative risks (RR) with a 95% confidence interval (CI95%).

Siblings who were not satisfied with the amount they talked about their feelings with others during their brother or sister's last month of life were more likely to report anxiety (15/58, 26%) than those who were satisfied (13/115, 11%; RR = 2.3(1.2–4.5)). The same was true for those who had been unable to talk to their family after bereavement (RR = 2.5(1.3–4.8)). Avoiding healthcare professionals for fear of being in their way increased siblings’ risk of reporting anxiety at follow-up (RR = 2.2(1.1–4.6)), especially avoidance in the hospital setting (RR = 6.7(2.5–18.2)). No such differences were seen when the ill brother or sister was cared for at home.

Long-term anxiety in bereaved siblings might be due to insufficient communication. Avoiding healthcare professionals, especially when the brother or sister is cared for at the hospital, may also increase the risk of anxiety.

During the course of their disease, patients with cancer receiving palliative chemotherapy receive extensive amounts of information from physicians. The objective of our study was to describe patients' perspectives on the information they received from physicians during palliative chemotherapy with regard to their cancer diagnosis, treatments, prognosis, and future planning.

A total of 15 semistructured face-to-face interviews with patients who had incurable cancer were conducted, transcribed verbatim, and analyzed with qualitative content analysis.

Three categories were defined during the analytical process: “having a chronic disease,” “depending on chemotherapy,” and “living with an unpredictable future.”

Our study demonstrated that patients undergoing palliative chemotherapy perceived that their disease was incurable and chronic, that they were dependent on chemotherapy, and that their future was uncertain. Compared with other studies, the patients in our study seemed to be more aware of their prognosis and the goals of care.

Routine early integration of palliative care with advanced cancer management is not yet a part of standard practice in many countries, including mainland China. Whether patients in China suffering from advanced cancer are referred to palliative care services in a timely manner remains unclear. We sought to investigate the timing of palliative care referral of Chinese cancer patients at our center and its predictors.

Retrospective medical data including demographic characteristics and referral information were collected for analysis. A total of 759 patients referred to our palliative care unit (PCU) from January of 2007 to December of 2013 were included in the final analysis.

The mean age of the 759 patients included in the study was 62.89 years (range 61.95–63.82). Some 369 patients (48.6%) were male and 559 (73.6%) Shanghainese (indigenous). Lung cancer (17.9%) was the most common diagnosis. The time interval since enrollment into the PCU until a patient's death (length of stay, LOS) was calculated. A longer LOS indicated earlier referral to inpatient PC services. The median LOS was 21 days (CI95% = 19.79–22.21). Multivariate analysis showed that whether or not the patient was indigenous (p = 0.002) and younger than 65 (p = 0.031) were independent factors for a longer LOS. Such other characteristics as gender and primary cancer type bore no relationship to LOS.

Our findings demonstrate that Chinese cancer patients are referred relatively late in the course of their disease to inpatient palliative care services. To overcome the barriers to early integration of palliative care into a patient's treatment plan, accurate information about palliative care must be provided to both oncologists and patients via comprehensive and systematic educational programs.

The present study sought to explore the role of meaning making and high-level construal in the relationship between meaning discrepancy and posttraumatic growth among Chinese cancer patients.

The participants were 193 individuals diagnosed with cancer. Meaning discrepancy, meaning making, high-level construal in meaning making, and posttraumatic growth were measured. Bootstrapping and structural equation modeling were performed to test the mediation effects of high-level construal on the meaning-making process.

Mediation analysis revealed that perceived discrepancies were associated with individuals' meaning-making efforts. Meaning-making efforts prompted participants to adopt a high-level construal orientation, which in turn enhanced posttraumatic growth.

Our study empirically tested construal level theory in a population suffering from severe chronic trauma. The results demonstrate the important role of high-level construal in the meaning-making process of cancer patients, suggesting a specific effective strategy to foster posttraumatic growth. It seems encouraging to indicate that adopting such high-level construal may be included as part of psychological interventions for cancer patients.

Spiritual history taking by physicians is recommended as part of palliative care. Nevertheless, very few studies have explored the way that experienced physicians undertake this task.

Using grounded theory, semistructured interviews were conducted with 23 physicians who had experience in caring for advanced cancer patients. They were asked to describe the way they discuss spirituality with their patients.

We have described a delicate, skilled, tailored process whereby physicians create a space in which patients feel safe enough to discuss intimate topics. Six themes were identified: (1) developing the self: physicians describe the need to understand and be secure in one's own spirituality and be comfortable with one's own mortality before being able to discuss spirituality; (2) developing one's attitude: awareness of the importance of spirituality in the life of a patient, and the need to respect each patient's beliefs is a prerequisite; (3) experienced physicians wait for the patient to give them an indication that they are ready to discuss spiritual issues and follow their lead; (4) what makes it easier: spiritual discussion is easier when doctor and patient share spiritual and cultural backgrounds, and the patient needs to be physically comfortable and willing to talk; (5) what makes it harder: experienced physicians know that they will find it difficult to discuss spirituality when they are rushed and when they identify too closely with a patient's struggles; and (6) an important and effective intervention: exploration of patient spirituality improves care and enhances coping.

A delicate, skilled, tailored process has been described whereby doctors endeavor to create a space in which patients feel sufficiently safe to discuss intimate topics.

Hospice volunteers often encounter questions related to spirituality. It is unknown whether spiritual care receives a corresponding level of attention in their training. Our survey investigated the current practice of spiritual care training in Germany.

An online survey sent to 1,332 hospice homecare services for adults in Germany was conducted during the summer of 2012. We employed the SPSS 21 software package for statistical evaluation.

All training programs included self-reflection on personal spirituality as obligatory. The definitions of spirituality used in programs differ considerably. The task of defining training objectives is randomly delegated to a supervisor, a trainer, or to the governing organization. More than half the institutions work in conjunction with an external trainer. These external trainers frequently have professional backgrounds in pastoral care/theology and/or in hospice/palliative care. While spiritual care receives great attention, the specific tasks it entails are rarely discussed. The response rate for our study was 25.0% (n = 332).

A need exists to develop training concepts that outline distinct contents, methods, and objectives. A prospective curriculum would have to provide assistance in the development of training programs. Moreover, it would need to be adaptable to the various concepts of spiritual care employed by the respective institutions and their hospice volunteers.

The aim of this study was to describe how patients in palliative care relate to occupation during hospitalization and to define the meaning it has for them.

Eight inpatients in palliative care with various cancer diagnoses were interviewed one time. These interviews were transcribed and analyzed using qualitative content analysis.

Patients experience occupations as meaningful when in hospital during the last period of their lives. They would like to be able to handle their own needs as much as possible. Staff behavior, the design of the environment, the lack of accessible occupations, and the degree to which patients can decide whether to receive or decline visits affect the possibility to make their wishes a reality. Our results also revealed that patients experience a sense of loss of their role, as well as a lack of control and participation.

Our results confirm the importance of occupation and of patients having the option to and being given opportunities to take care of themselves when in palliative care. Further studies are needed to enable us to understand how organized occupations might influence patients' experience of being in a hospital during the final period of life.

The Ars moriendi was a book written in the early 15th century with the goal of assisting friars in their work of helping the dying. The aim of our study was to review the current literature on the Ars Moriendi concerning the field of medicine, to analyze the psychological mechanisms for coping with death anxiety within Ars Moriendi, and to explore parallels between the strategies used in the medieval book and in contemporary literature about death and dying.

A review of literature using Pubmed, EMBASE, JSTOR, Project MUSE, and the New York Public Library was undertaken first. The primary source was then interpreted from a medical/psychological point of view.

Seven articles were selected by literature review. These works comment on the importance of the Ars Moriendi in its historical context and explore the possibility of retrieving the principles of the text in contemporary society. The original text of Ars Moriendi, the primary source, presents death as a relief from the sufferings of earthly life and a gateway to eternal glory. According to the author, a good death implied the triumph over five demonic temptations in agonizing people: a lack of faith, despair, impatience, pride and greed.

Analyzed from a modern psychiatric perspective, the Ars Moriendi offers descriptions of behavioral manifestations compatible with delirium, mood and anxiety disorders that characterize people with terminal illnesses. Moreover, we also explored parallels between the strategies used to cope with death anxiety in the Late Middle Ages and in contemporary society.

Spiritual care is recognized as an essential component of palliative care (PC). However, patients' experience of spirituality is heavily context dependent. In addition, Western definitions and findings regarding spirituality may not be applicable to patients of non-Western origin, such as Indian PC patients. Given the particular sociocultural, religious, and economic conditions in which PC programs in India operate, we decided to undertake a systematic review of the literature on spirituality among Indian PC patients. We intended to assess how spirituality has been interpreted and operationalized in studies of this population, to determine which dimensions of spirituality are important for patients, and to analyze its ethical implications.

In January of 2015, we searched five databases (ATLA, CINAHL, EMBASE, PsycINFO, and PubMed) using a combination of controlled and noncontrolled vocabulary. A content analysis of all selected reports was undertaken to assess the interpretation and dimensions of spirituality. Data extraction from empirical studies was done using a data-extraction sheet.

A total of 39 empirical studies (12 qualitative, 21 quantitative, and 6 mixed-methods) and 18 others (10 reviews, 4 opinion articles, and 4 case studies) were retrieved. To date, no systematic review on spirituality in Indian PC has been published. Spirituality was the main focus of only six empirical studies. The content analysis revealed three dimensions of spirituality: (1) the relational dimension, (2) the existential dimension, and (3) the values dimension. Religion is prominent in all these dimensions. Patients' experiences of spirituality are determined by the specifically Indian context, which leads to particular ethical issues.

Since spiritual well-being greatly impacts quality of life, and because of the substantial presence of people of Indian origin living outside the subcontinent, the findings of our review have international relevance. Moreover, our review illustrates that spirituality can be an ethical challenge and that more ethical reflection on provision of spiritual care is needed.

The formation of a strong bond between patients and therapists can lead to successful treatment outcomes. Yet, little is known about the mechanisms that function to control this relationship. The objective of this case report was to examine the ruptures and repairs in the working alliance between a young therapist and an elderly caregiver, and to suggest ways in which to deal with age-related challenges to such an alliance.

In order to examine the ruptures and repairs in a working alliance, this case report reflects on the interdependent relationship among therapist variables, patient variables, and the therapeutic alliance. The clinical experience presented describes a newly educated psychologist's struggles to overcome the challenges in forming a strong working alliance with an elderly dying cancer patient's spouse. The spouse was enrolled in the DOMUS study (Clinicaltrials.gov: NTC01885637), an ongoing randomized controlled trial of a patient-and-caregiver intervention for facilitating the transition from an oncology ward to palliative at-home care, and then bereavement. As part of the DOMUS study, the patient and spouse received a psychological intervention based on existential-phenomenological therapy.

A therapist's therapeutic approach to breaking down age-related barriers to communication matters greatly. The existential-phenomenological method of epoché offers a way to effectively address ruptures and repairs in a working alliance, as it enhances the therapist's openness to learning. In addition, the insights of senior supervisors can promote a therapist's openness to learning.

In conclusion, the method of epoché benefits the working alliance in several ways, as it enhances personal insight and provides methods for repairing an alliance. The reflections in this paper may be applied to clinical settings in oncology, gerontology, and palliative care, which are likely to be of great interest to young clinicians experiencing age-related challenges in their daily work.