The present study investigated what types of transformation terminally ill cancer patients experienced from diagnosis until the terminal stage, what meanings terminally ill cancer patients attributed to their illness, and whether or not those who attributed positive meaning to their illness achieved high levels of spiritual well-being as a preliminary study.

Ten terminally ill cancer patients in the hospice wards of two general hospitals participated. A clinical psychologist conducted a semistructured interview with the patients individually for about 60 min. Patients completed the FACIT-Sp and HADS before the interview and talked about the meanings of cancer experience. The contents of the interviews were analyzed qualitatively. Patients were separated into high and low levels of spiritual-well being by the median of FACIT-Sp scores.

Three types of transformation were extracted: “group with peaceful mind,” “group with both positive attitude and uneasy feeling,” and “groups with uneasy feeling.” As attributed meanings to the illness, five categories were extracted: “positive meaning,” “natural acceptance,” “negative acceptance,” “search for meaning,” and “regret and sorrow.” Patients in the high level spiritual well-being group attributed the meaning of illness to “positive meaning” and “natural acceptance,” and those in the low level spiritual well-being group attributed it to “regret and sorrow” and “search for meaning.”

Some Japanese terminally ill cancer patients experienced positive transformation, and patients who attributed “positive meaning” and “natural acceptance” to their illness experience achieved high levels of spiritual well-being.

This research examined the psychometric properties of previously published short forms of the Geriatric Depression Scale (GDS) in patients receiving palliative care. It also uses the full form of the GDS to examine the prevalence of nonsomatic symptoms of depression in palliative patients.

Participants were 84 patients with advanced cancer attending palliative care outpatient clinics. Scores for short forms of the GDS were derived from administering the original 30-item scale. Patients also completed the single item numerical analogue scale for depression from the Edmonton Symptom Assessment System and parallel numerical analogue scales for will-to-live and hope. A subset of the sample completed the measures twice. Short forms were judged on the extent to which they captured information gained from the full scale and their internal consistency, test–retest reliability, convergent and concurrent validity, and their distribution of scores.

Overall, five short forms showed good psychometric properties at both visits. Two of these forms were very brief. Some nonsomatic symptoms assessed on the full GDS were reported with high frequency. However, few individuals reported a large number of symptoms. At both visits, patients identified as likely to have severe depression gave different responses from other patients on most items on the GDS-30.

Several short forms of the GDS may be appropriate for use in palliative care. Patients identified as likely to have severe depression showed many of the same symptoms that characterise depression in other geriatric populations.

Improving the care provided for people dying in acute healthcare facilities has been identified as a priority for Australian healthcare. Previous observations support the idea that quality care improves outcomes for the dying person as well as for their relatives. To improve care it is essential that there be a clear understanding of which issues require attention. The aim of our project was to improve the understanding of the experiences of family members whose relatives had died on an acute medical ward.

A mixed-methods approach was adopted for our study. With the approval of the human ethics committee, relatives were approached within three months of the death of their family member and invited to participate in an interview based on a quality-of-dying-and-death (QoDD) tool.

Of the 50 families approached, 10 agreed to be interviewed. When they were asked to reflect on the experiences of the dying person, the issues that they articulated most strongly related to the need to have time before death to address issues and spend time with important others. With regards to the needs of the dying person's relatives, people articulated strongly that they needed information, support, and evidence of good symptom control. The provision of support post-death was also poignantly highlighted.

This study supports observations made in other clinical areas that have identified that timely communication, good symptom control, and ongoing support for both the dying person and their family has important ramifications. Articulating such details is an important part of understanding which aspects of care require attention.

Understanding patients' decisional control preferences (DCPs) is important to improving the quality of care and the satisfaction of patients who have advanced cancer with their care. In addition to passive decisional control (i.e., the patient prefers his/her doctor or family caregiver to make a decision on their behalf) and active decisional control (i.e., the patient decides alone), shared decisional control, where patients and caregivers decide together, could be more appropriate. The primary aim of our study was to describe the decision-making process and the DCPs of patients with advanced cancer receiving palliative care in France.

We conducted a prospective survey with advanced cancer patients referred to a palliative care team in an outpatient setting. We collected information about patients' demographic and clinical characteristics using the Decision Control Preference Scale, the Satisfaction with the Decisions and Care questionnaire, and the Understanding of Illness questionnaire.

A total of 200 patients were evaluable. The median age was 63.5 years and 53.5% female. The cancers most commonly represented were gastrointestinal and breast. A total of 72 patients (36.2%) preferred active decisional control, 52 (26.1%) preferred shared decisional control, and 75 (37.7%) preferred passive decisional control. Younger age (p = 0.003), higher education (p < 0.001), and employment status (p = 0.046) were found to be associated with active or shared DCPs. Some 82% of patients were satisfied with the decision-making process, 35% of whom expressed wishes that did not match the actual decision-making process. Only 23% of patients thought they could be cured of their illness, and 47% thought that their treatment would “get rid of ” their disease.

The decision-making processes are shared in the three models of DCPs in our cohort of French patients with advanced cancer. Further prospective studies are needed.

To review current evidence of nurses’ involvement in end-of-life discussions with incurable cancer patients and their family caregivers.

We conducted a systematic integrative review in accordance with PRISMA guidelines: PROSPERO, registration number: CRD42020186204.

CINAHL, Medline, PsycInfo, Embase. We searched for primary research between 2010 and 2020.

Of 3,271 references, we found 15 eligible articles: qualitative (n = 12) and quantitative (n = 3). The studies focused on oncology nurses' perspective of involvement in end-of-life discussions. The data analysis resulted in four overall themes: (1) Nursing roles; the advocating, supporting, and reframing roles, and an undefined task, for example in medical consultations, (2) Trust building, (3) Nurse competences, and (4) Medical issues.

The nurses have several roles in end-of-life discussions, but insufficient competencies to be involved in that kind of discussions, for example to involve and communicate with families. The findings implicate an educational need among the nurses. However, it also points toward an organizational change in the outpatient clinics, for example that end-of-life discussions follow a more structured approach, are offered in a scheduled manner, and that nurses invite the family caregivers to attend.

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.

Akathisia is a neuropsychiatric syndrome characterized by subjective and objective restlessness. It is a common side effect in patients taking antipsychotics and other psychotropics. Patients with delirium are frequently treated with antipsychotic medications that are well known to induce akathisia as a side effect. However, the prevalence, phenomenology, and management of akathisia in patients with delirium remain largely unknown. The purpose of this review was to examine the medical literature in order to establish the current state of knowledge regarding the prevalence of antipsychotic-induced akathisia in patients with delirium.

A systematic review of the literature was conducted using the EMBASE, MEDLINE, PsycINFO, and CINAHL databases. Ten studies addressing the incidence of akathisia in patients taking antipsychotic medication for delirium were identified and included in our review.

The included studies reported a variable prevalence of antipsychotic-induced akathisia. A higher prevalence was found in patients taking haloperidol. Among atypical antipsychotics, paliperidone and ziprasidone were associated with a higher risk of akathisia. The risk for akathisia appeared to be a dose-related phenomenon.

Studies using specific scales for evaluation of akathisia in delirium are lacking. Some populations, such as patients with cancer or terminally ill patients in palliative care settings taking antipsychotics for the treatment of delirium, could be at higher risk for development of akathisia as a side effect.

Communication based on patient preferences can alleviate their psychological distress and is an important part of patient-centered care for physicians who have the task of conveying bad news to cancer patients. The present study aimed to explore the demographic, medical, and psychological factors associated with patient preferences with regard to communication of bad news.

Outpatients with a variety of cancers were consecutively invited to participate in our study after their follow-up medical visit. A questionnaire assessed their preferences regarding the communication of bad news, covering four factors—(1) how bad news is delivered, (2) reassurance and emotional support, (3) additional information, and (4) setting—as well as on demographic, medical, and psychosocial factors.

A total of 529 outpatients with a variety of cancers completed the questionnaire. Multiple regression analyses indicated that patients who were younger, female, had greater faith in their physician, and were more highly educated placed more importance on “how bad news is delivered” than patients who were older, male, had less faith in their physician, and a lower level of education. Female patients and patients without an occupation placed more importance on “reassurance and emotional support.” Younger, female, and more highly educated patients placed more importance on “additional information.” Younger, female, and more highly educated patients, along with patients who weren't undergoing active treatment placed more importance on “setting.”

Patient preferences with regard to communication of bad news are associated with factors related to patient background. Physicians should consider these characteristics when delivering bad news and use an appropriate communication style tailored to each patient.

Although thiamine deficiency (TD) and Wernicke encephalopathy (WE) are not rare in cancer patients, the cases reported to date developed TD and/or WE after treatment had started.

From a series of cancer patients, we report a patient diagnosed with TD without the typical clinical symptoms of WE at the preoperative psychiatric examination.

A 43-year-old woman with ovarian cancer was referred by her oncologist to the psycho-oncology outpatient clinic for preoperative psychiatric evaluation. Her tumor had been growing rapidly before the referral. Although she did not develop delirium, cerebellar signs, or eye symptoms, we suspected she might have developed TD because of her 2-month loss of appetite as the storage capacity of thiamine in the body is approximately 18 days. The diagnosis of TD was supported by abnormally low serum thiamine levels.

Cancer therapists need to be aware that thiamine deficiency may occur even before the start of cancer treatment. In cases with a loss of appetite of more than 2 weeks’ duration, in particular, thiamine deficiency should be considered if the tumor is rapidly increasing, regardless of the presence or absence of delirium.

Survivors of hematopoietic stem cell transplant (HSCT) have experienced a life threatening and potentially traumatic illness and treatment that make them vulnerable to long lasting negative psychological outcomes, including anxiety and depression. Nevertheless, studies show that overcoming cancer and its treatment can present an opportunity for personal growth and psychological health (reduced symptoms of anxiety and depression and high levels of emotional well-being) through resilience. However, research has not yet clarified what differentiates HSCT survivors who experience psychological growth from those who do not. By analyzing recovery narratives, we examined whether HSCT survivors’ interpretation of their experiences helps explain differences in their post-treatment psychological health.

Guided by narrative psychology theory, we analyzed the narratives of 23 HSCT survivors writing about their experience of cancer treatment. Psychological health was measured by: (1) emotional well-being subscale part of the Functional Assessment of Cancer Therapy Bone Marrow Transplant (FACT-BMT), (2) depression, and (3) anxiety subscales of the Brief Symptom Inventory.

Findings revealed a positive relation between psychological health and a greater number of redemption episodes (going from an emotionally negative life event to an emotionally positive one) as well as fewer negative emotional expressions.

Theoretical and practical implications of these findings are discussed, showing how narratives can inform interventions to assist cancer survivors with their psychological recovery.

Symptom assessment is important in palliative care. Computerized technology (CT) is now available for use in such assessments. Barriers against implementation of CT in health care in general are well known, but less is known about how such technology is perceived by palliative health care personnel. The aim of the present study was to investigate the experience with implementation of CT among personnel in symptom assessment at a palliative care unit.

Seventeen respondents from a hospital ward unit and an outpatient clinic unit participated in an in-depth interview. A qualitative approach was used in collecting and analyzing the data.

Respondents at the hospital ward unit were better motivated than respondents at an outpatient clinic unit. It was stated that the health condition of the patient is important in their perception of the tool as useful or not. Conflicts between “high tech” and “high touch” were reported in both units.

When the implementation process is conducted in such a manner that the health care personnel are involved, benefits of the tool can be realized. Thus, effective implementation and use of high tech can lead to more time released for high touch.

Clinical practice aims to respect patient autonomy by basing treatment decisions for incapacitated patients on their own preferences. Yet many patients do not complete an advance directive, and those who do frequently just designate a family member to make decisions for them. This finding raises the concern that clinical practice may be based on a mistaken understanding of patient priorities. The present study aimed to collect systematic data on how patients prioritize the goals of treatment decision making.

We employed a self-administered, quantitative survey of patients in a tertiary care center.

Some 80% or more of the 1169 respondents (response rate = 59.8%) ranked six of eight listed goals for treatment decision making as important. When asked which goal was most important, 38.8% identified obtaining desired or avoiding unwanted treatments, 20.0% identified minimizing stress or financial burden on their family, and 14.6% identified having their family help to make treatment decisions. No single goal was designated as most important by 25.0% of participants.

Patients endorsed three primary goals with respect to decision making during periods of incapacity: being treated consistent with their own preferences; minimizing the burden on their family; and involving their family in the decision-making process. However, no single goal was prioritized by a clear majority of patients. These findings suggest that advance care planning should not be limited to documenting patients' treatment preferences. Clinicians should also discuss and document patients' priorities for how decisions are to be made. Moreover, future research should evaluate ways to modify current practice to promote all three of patients primary goals for treatment decision making.

This scoping literature review, through finding and assessing researched bereavement service outcomes, sought to determine the state of bereavement services evaluation, to catalogue service types, and to identify which service or services, if any, demonstrate clear evidence of effectiveness.

Our methods included: (1) a literature search for published English-language research articles from 2005–2015; (2) critical appraisal of articles to identify findings; (3) compilation of findings; and (4) determination of the relevance of our findings.

Some 38 papers were found, and all were retained to identify the outcomes researched and research findings. Many different outcomes were studied in the 18 quantitative, 11 qualitative, and 9 mixed-methods investigations undertaken worldwide. Ten studies focused on level of grief, six on stress/distress level, six on grief knowledge, six on level of depression, and five on somatization or physical symptoms. Most commonly, a group of bereavement services was evaluated as a whole, followed by group therapy, individual counseling, written information, and other less common services. No group of services or individual service was determined to yield clear and convincing evidence of effectiveness. Regardless, all but one service were shown to have value—most often related to gaining grief information and/or emotional support. Until high-quality research studies have repeatedly revealed evidence of effectiveness, it is possible that the positive outcomes of bereavement services will be largely based on bereaved people receiving helpful educational information and emotional support from organizations and people prepared to help them.

This project outlines existing bereavement service types and the state of science in relation to determination of outcomes. It offers suggestions to advance the state of science to validate or refine bereavement services. It brings to light the issue that bereavement service outcomes need to be carefully researched so that evidence can drive service refinement and expansion. It also highlights the importance of effective bereavement services.

The aim of the study was to describe family members' experiences of content, structure, and approach of a potential intervention including a support group program for family members of persons with life-threatening illness.

The study was a pilot project in a developmental phase in which a potential intervention, a support group program, was investigated. The design of the study was qualitative descriptive. Twenty-nine family members were interviewed by telephone after taking part in the program. The interviews were analyzed using qualitative content analysis.

The results indicate that the support group program could work as an acceptable and useful intervention for family members. The program was experienced to cover topics of immediate interest reflecting life close to severely ill persons. The structure of the program was found to be inviting, offering an opportunity to establish relationships with other participants and the caring team in a warm atmosphere.

The study indicates the importance of health professionals inviting and interacting with family members during ongoing palliative care. The results could inspire nursing staff to initiate, develop, and deliver similar interventions.

There is an emerging body of research aimed at understanding the determinants of place of death, as where people die may influence the quality of their death. However, little is known about place of death for people of Southern Africa. This study describes place of death (home or hospital) and potential influencing factors (cause of death, age, gender, occupation, and district of residence).

We collected the death records for years 2005 and 2006 for all adult non-traumatic deaths that occurred in Botswana, described them, and looked for associations using bivariate and multivariate analyses.

The evaluable sample consisted of 18,869 death records. Home deaths accounted for 36% of all deaths, and were predominantly listed with “unknown” cause (82.3%). Causes of death for hospital deaths were HIV/AIDS (49.7%), cardiovascular disease (13.8%), and cancer (6.6%). The mean age at the time of all deaths was 53.2 years (SD = 20.9); with 61 years (SD = 22.5) for home deaths and 48.8 years (SD = 18.6) for hospital deaths (p < .001). Logistic regression analysis revealed the following independent predictors of dying at home: unknown cause of death; female gender; >80 years of age; and residing in a city or rural area (p < .05).

A major limitation of this study was documentation of cause of death; the majority of people who died at home were listed with an unknown cause of death. This finding impeded the ability of the study to determine whether cause of death influenced dying at home. Future study is needed to determine whether verbal autopsies would increase death-certificate listings of causes of home deaths. These data would help direct end-of-life care for patients in the home.

Despite the availability of palliative care in many countries, legalization of euthanasia and physician-assisted suicide (EAS) continues to be debated—particularly around ethical and legal issues—and the surrounding controversy shows no signs of abating. Responding to EAS requests is considered one of the most difficult healthcare responsibilities. In the present paper, we highlight some of the less frequently discussed practical implications for palliative care provision if EAS were to be legalized. Our aim was not to take an explicit anti-EAS stance or expand on findings from systematic reviews or philosophical and ethico-legal treatises, but rather to offer clinical perspectives and the potential pragmatic implications of legalized EAS for palliative care provision, patients and families, healthcare professionals, and the broader community.

We provide insights from our multidisciplinary clinical experience, coupled with those from various jurisdictions where EAS is, or has been, legalized.

We believe that these issues, many of which are encountered at the bedside, must be considered in detail so that the pragmatic implications of EAS can be comprehensively considered.

Increased resources and effort must be directed toward training, research, community engagement, and ensuring adequate resourcing for palliative care before further consideration is given to allocating resources for legalizing euthanasia and physician-assisted suicide.

A longitudinal pediatric palliative care curriculum was introduced into the pediatric residency program at the University of California, Los Angeles. The present study explores the possible effects of this curriculum on the interns' self-assessed comfort levels regarding caring for children with life-threatening conditions.

A newly created assessment tool was administered to interns in order to rate their comfort regarding pediatric palliative care at the beginning and conclusion of their intern year.

Twenty-two of the 29 interns completed this survey. Baseline data indicated 55% of the interns had some experience with taking care of a dying pediatric patient during their medical school training, and 79% indicated that they had taken care of a dying adult. Only 7% of the interns felt adequately prepared to deal with death and dying, but all interns indicated interest in further learning about pediatric palliative care. Comparison of the overall comfort levels of the 22 responding residents before and after the first year of training in 20 different related tasks demonstrated a significant self-assessed improvement of comfort in seven areas. There was no increase in self-reported comfort in communication related to palliative care.

Residents indicated increased comfort in some areas of pediatric palliative care after the first year of their training. The underlying cause of this increased comfort is unclear at this time. The overall effect of longitudinal palliative care curriculums on residents' level of comfort in caring for this population deserves further assessment.

This study aimed to develop a new and brief instrument to be employed in dignity measurement, one based on the perceptions of patients, relatives, and professionals about dignity.

Surveys of patients receiving palliative care, family caregivers, and palliative care professionals were first carried out (sample 1). In the second step, palliative care patients were surveyed with a pilot questionnaire (sample 2). Finally, a survey design was used to assess patients admitted into a home care unit (sample 3). Sample 1 included 78 subjects, including patients, family caregivers, and professionals. Some 20 additional palliative patients participated in sample 2. Finally, 70 more patients admitted to a home care unit participated were surveyed (sample 3). Together with the Palliative Patients' Dignity Scale (PPDS), our survey included other measures of dignity, anxiety, depression, resilient coping, quality of life, spirituality, and social support.

After analyzing data from steps 1 and 2, an eight-item questionnaire was presented for validation. The new scale showed appropriate factorial validity (χ2(19) = 21.43, p = 0.31, CFI = 0.99, GFI = 0.92, SRMR = 0.07, and RMSEA = 0.04), reliability (internal consistency estimations of 0.75 and higher), criterial validity (significant correlations with the hypothesized related variables), and a cutoff criteria of 50 on the overall scale.

The new PPDS has appropriate psychometric properties that, together with its briefness, encourages its applicability for dignity assessment at the end of life.

The Demoralization Scale (DS) is the most widely used measure for assessing demoralization. Following the recent clamor for brief assessment tools, and taking into account that demoralization has proved to be a symptom that needs to be controlled and treated in the palliative care setting, a shorter scale is needed. The aim of the present research is to introduce and evaluate the Short Demoralization Scale (SDS).

We employed a cross-sectional design that included a survey of 226 Spanish palliative care patients from the Hospital General Universitario de Valencia. We employed the SDS, the DS, and the Hospital Anxiety and Depression Scale (HADS).

The confirmatory factor analysis supported the one-factor structure of the SDS (χ2(5) = 12.915; p = 0.024; CFI = 0.999; RMSEA = 0.084; CI95% = [0.028, 0.141]). The reliability was found to be appropriate, with a value of Cronbach's alpha (α) equal to 0.920. A cutoff criterion of 10 was established, which favored the interpretability of the instrument.

The SDS corrects previous limitations, has a simple scoring system, is cost-effective, and is widely and fully available. In addition, our findings demonstrate that the SDS can be employed effectively in the clinical context.