The integration of palliative care (PC) education into medical and nursing curricula has been identified as an international priority. PC education has undergone significant development in Latin America, but gaps in the integration of PC courses into undergraduate and postgraduate curricula remain. The aim of our review was to systematically examine the delivery of PC education in Latin America in order to explore the content and method of delivery of current PC programs, identify gaps in the availability of education opportunities, and document common barriers encountered in the course of their implementation.

We carried out a systematic review of peer-reviewed academic articles and grey literature. Peer-reviewed articles were obtained from the following databases: CINAHL Plus, Embase, the Web of Science, and Medline. Grey literature was obtained from the following directories: the International Association for Hospice and Palliative Care's Global Directory of Education in Palliative Care, the Worldwide Hospice Palliative Care Alliance's lists of palliative care resources, the Latin American Association for Palliative Care's training resources, and the Latin American Atlas of Palliative Care. The inclusion criteria were that the work: (1) focused on describing PC courses; (2) was aimed at healthcare professionals; and (3) was implemented in Latin America. The PRISMA checklist was employed to guide the reporting of methods and findings.

We found 36 programs that were delivered in 8 countries. Most of the programs were composed of interdisciplinary teams, taught at a postgraduate level, focused on pain and symptom management, and utilized classroom-based methods. The tools for evaluating the courses were rarely reported. The main barriers during implementation included: a lack of recognition of the importance of PC education, a lack of funding, and the unavailability of trained teaching staff.

Considerable work needs to be done to improve the delivery of PC education programs in Latin American countries. Practice-based methods and exposure to clinical settings should be integrated into ongoing courses to facilitate learning. A regional platform needs to be created to share experiences of successful training programs and foster the development of PC education throughout Latin America.

Psychosocial interventions that mitigate psychosocial distress in cancer patients are important. The primary aim of this study was to examine the feasibility and acceptability of an adaptation of the Mindful Self-Compassion (MSC) program among adult cancer patients. A secondary aim was to examine pre–post-program changes in psychosocial wellbeing.

The research design was a feasibility and acceptability study, with an examination of pre- to post-intervention changes in psychosocial measures. A study information pack was posted to 173 adult cancer patients 6 months–5 years post-diagnosis, with an invitation to attend an eight-week group-based adaptation of the MSC program.

Thirty-two (19%) consented to the program, with 30 commencing. Twenty-seven completed the program (mean age: 62.93 years, SD 14.04; 17 [63%] female), attending a mean 6.93 (SD 1.11) group sessions. There were no significant differences in medico-demographic factors between program-completers and those who did not consent. However, there was a trend toward shorter time since diagnosis in the program-completers group. Program-completers rated the program highly regarding content, relevance to the concerns of cancer patients, and the likelihood of recommending the program to other cancer patients. Sixty-three percent perceived that their mental wellbeing had improved from pre- to post-program; none perceived a deterioration in mental wellbeing. Small-to-medium effects were observed for depressive symptoms, fear of cancer recurrence, stress, loneliness, body image satisfaction, mindfulness, and self-compassion.

The MSC program appears feasible and acceptable to adults diagnosed with non-advanced cancer. The preliminary estimates of effect sizes in this sample suggest that participation in the program was associated with improvements in psychosocial wellbeing. Collectively, these findings suggest that there may be value in conducting an adequately powered randomized controlled trial to determine the efficacy of the MSC program in enhancing the psychosocial wellbeing of cancer patients.

To date, no measure of social support has been developed specifically for either palliative care or oncology settings. The present study examined the psychometric properties of the Duke–University of North Carolina Functional Social Support Questionnaire (DUFSS) in order to (1) assess the adequacy of the scale in the context of severe medical illness and (2) evaluate whether a brief subset of items might generate roughly comparable utility.

The 14-item DUFSS was administered to 1,362 individuals with advanced cancer or AIDS. Classical test theory (CTT) and item response theory (IRT) analyses were utilized to develop an abbreviated version of the DUFSS that maintained adequate reliability and validity and might increase the feasibility of its administration in a palliative care setting. The reliability and concurrent validity of the DUFSS-5 were evaluated in a separate validation sample of patients with advanced cancer.

Analyses generated a five-item version of the DUFSS (the DUFSS-5) that collapsed response levels into only three options, instead of five. Correlations between the DUFSS-5 and measures of depression, quality of life, and desire for hastened death, as well as regression models testing the main-effect and buffering models of social support, provided support for the utility of the DUFSS-5.

Both the DUFSS and the abbreviated DUFSS-5 appear to have adequate reliability and validity in this setting. Moreover, the DUFSS-5 represents a potentially important option for healthcare researchers, particularly for those working in palliative care settings where issues of patient burden are paramount. Such analyses are critical for advancing the development and refinement of psychosocial measures, but have often been neglected.

Caregivers of cancer patients are faced with significant demands that can seriously impact their physical and mental health. It is important for healthcare professionals to be aware of caregivers' support needs in order for these to be adequately addressed. Our study develops a German version of the Family Inventory of Needs (FIN) and provides a comprehensive evaluation of its acceptability and psychometric properties.

Cross-sectional data from 308 participants were taken from the baseline assessment of an ongoing prospective study. Retests were completed by 46 participants approximately one week after baseline. Informal caregivers of terminally ill cancer patients were recruited from three hospitals in Vienna. Questionnaires for hope (IHS), traumatic stress (IES–R), and depression and anxiety (HADS) were employed together with the translated FIN to assess concurrent and discriminant validity.

The internal consistency of FIN–Importance had a Cronbach's α of 0.94, and that for FIN–Fulfillment was α = 0.96. Retest reliability for FIN–Importance was r = 0.97, while that for FIN–Fulfillment could not be calculated due to missing responses to this subscale. Concurrent and discriminant validity tests for the scale and the discriminative power of items were adequate. However, missing responses may limit the feasibility of using this scale in research settings. We identified six questions that could be excluded from the scale in order to increase its acceptability and further improve its psychometric properties.

Our results suggest that the FIN is suitable for clinical settings. For use in research, we suggest four adaptations to increase the scale's acceptability and psychometric properties. The FIN can be a valuable tool for informing the emotional, physical, and psychological support provided to family carers of people who are terminally ill with cancer.

Recognizing depressive symptoms in patients with amyotrophic lateral sclerosis (ALS) remains problematic given the potential overlap with the normal psychological responses to a terminal illness. Understanding mental health and disease-related risk factors for depression is key to identifying psychological morbidity. The present study aimed to determine the prevalence of depressive symptoms in ALS and to explore mental health and disease-related risk factors for depression.

Structured medical and psychiatric history questionnaires and a validated depression scale (Depression, Anxiety, Stress Scale–21) were completed by 27 ALS patients (60% female; 59% limb onset; age 65.11 ± SE 2.21) prior to their initial review at a multidisciplinary clinic. Physical function was assessed with the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS–R).

At the time of initial assessment, 44% of patients had a previous psychiatric history, although the majority (62%) reported no symptoms of depression. The mean ALSFRS–R score was 37.78 ± SE 1.22, with an average diagnostic interval of 16.04 ± SE 2.39 months. Logistic regression analysis revealed that the length of the diagnostic interval alone predicted depressive symptoms (χ2(3, n = 26) = 9.21, Odds Ratio (OR) = 1.12, p < 0.05.

The illness experiences of ALS patients rather than established mental health risk factors influence the manifestation of depressive symptoms in the early stages of the disease, with clinical implications for the assessment and treatment of psychological morbidity. Patients with lengthy diagnostic intervals may be prime targets for psychological assessment and intervention, especially in the absence of ALS-specific tests and biomarkers.

Medical education can be described as a socialization process that has a tendency to produce doctors who struggle to convey to patients that they care. Yet, for people who are suffering, to enjoy the quality of life they are entitled to, it is important that they feel cared for as people, rather than simply attended to as patients.

This article addresses how we teach medical students the art of caring for the person rather than simply treating the disease—a question particularly relevant to end-of-life care where, in addition to the physical needs, attention to the psychosocial, emotional, and spiritual needs of the patient is paramount. Following an overview of what it is to care and why it is important that patients feel cared for, we investigate how we learn to care and develop caring human relationships, describing the development and display of empathy in adulthood and the developmental impact of human interaction.

We outline evidence of situational barriers to effective education about care in medicine including role models, ward culture, and the socialization process.

We then propose a model for medical education based on patient contact, reflection, self-care, role model development, and feedback that will see students learn the art of human care as well as the science of disease management.

Many people now die in community care, and, considering the aging population, all healthcare staff members must be prepared to provide palliative care. Our objectives were to describe the total staff working in different care organizations in a rural community in Sweden and to explore palliative care competence, to describe educational gaps and the need for support and reflection, and to determine whether there are differences in care organizations, professions, age, and gender.

A 4-section 20-item questionnaire was distributed to 1686 staff (65% response rate): in nursing homes (n = 395), home care (n = 240), and group residential settings (n = 365). Registered nurses (n = 70), assistant nurses (n = 916), managers (n = 43), and paramedics (n = 33) participated. Descriptive and correlational statistics were employed.

Significant differences were found, and 40% (53% among men) lacked palliative care education, Fewer than 50% lacked education in the spiritual/existential areas, and 75% of those aged 20–66 (75% women, 55% men) needed further education. More women than men and staff aged 50–59 had an increased need to reflect.

Our study may provide guidance for managers in rural communities when planning educational interventions in palliative care for healthcare staff and may support direct education with content for specific professions.

Quality end-of-life care requires effective communication skills, yet medical and nursing students report limited opportunities to develop these skills, and that they lack confidence and the related competence.

Our purpose was to design, implement, and evaluate an educational intervention employing simulated patient actors to enhance students' abilities to communicate with dying patients and their families.

A study employing a mixed-methods design was conducted with prequalification nursing and medical students recruited from a London university. The first phase involved focus groups with students, which informed the development of an educational intervention involving simulated patient actors. Questionnaires measuring students' perceptions of confidence and competence levels when communicating with dying patients and their families were administered before and after the intervention.

The themes from focus groups related to responding to grief and anger, difficulties dealing with emotions, knowing the “right thing” to say, and a lack of experience. A significant increase (p < 0.5) in competence and confidence from baseline levels followed participation in the simulated scenarios.

Simulation was found to be an effective means of preparing students to communicate with dying patients and their families. The opportunity to develop communication skills was valued. Integration of educational interventions employing simulated patient actors into nursing and medical curricula may assist in improving the care provided to patients at the end of life.

Symptoms of depression and cancer-related fatigue (CRF) are common among breast cancer patients postchemotherapy and may seriously impair quality of life (QoL). This study aimed to assess the relationship between depression and CRF in breast cancer patients postchemotherapy and to examine their relationships to optimism and to threat and challenge appraisals.

Participants included 95 breast cancer patients (stages 1–3) 1 to 6 months after completion of chemotherapy. Patients submitted personal and medical details and completed the following: physical symptom questionnaires (EORTC QLQ–C30, and QLQ–BR23), a symptoms of depression questionnaire (CES–D), the Fatigue Symptom Inventory (FSI), the Life Orientation Test (LOT–R), and a stress appraisals questionnaire.

We found levels of depression, CRF, and appraisals of cancer as a threat to be moderate and levels of optimism and appraisals of cancer as a challenge to be high. Depression and CRF were positively associated. A multivariate regression analysis revealed that 51% of the CRF variance was explained and, together with physical symptoms and threat appraisal, were significantly associated with CRF. A total 67% of depression was explained and, and together with challenge and threat appraisals, were significantly associated with depression.

Although CRF and depression were often experienced simultaneously and both were found to be higher among individuals who gave higher appraisals of cancer as a threat, only depression was related to optimism and challenge appraisals, while CRF was related mainly to intensity of physical symptoms. The different pattern of associations between optimism and appraisals warrants further clinical attention as well as future study.

The aim of this study was to examine health-related quality of life (HRQoL), individual QoL, anxiety and depression in patients with amyotrophic lateral sclerosis (ALS) and their next of kin in relation to patients' physical function over time.

35 patients and their next of kin were studied using the Short Form-36 Health Survey (SF-36), Schedule for Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), and Hospital Anxiety and Depression Scale (HADS) and patients also by the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised and the Norris scale every fourth to sixth month, one to four times.

Changes were found over time in both patients and their next of kin in the SF-36 but not in the SEIQoL-DW or HADS. Patients rated worse than their next of kin in the SF-36 physical subscales and next of kin rated worse than the patients in the global QoL score in SEIQoL-DW. Health, hobbies, and total relations were important areas in the SEIQoL-DW among all participants, but some important areas also differed between the patients and their next of kin. In most important areas among the pairs, the next of kin estimated their functioning/satisfaction worse than patients estimated their functioning/satisfaction.

There were few changes over time in the QoL among the participants. Although most of the estimates in patients and their next of kin were equal, there were also some differences. These results emphasize the importance of support for both patients and their next of kin and that support ought to be given on both individual bases and together in pairs. The SEIQoL-DW might give signposts in the care through the course of the disease about what should be focused on to increase satisfaction of the important areas of life and might help the person to find coping strategies to handle his or her life situation.

Our aim was to gain insight into the perspectives of patients, close relatives, nurses, and physicians on medication management for patients with a life expectancy of less than 3 months.

We conducted an empirical multicenter study with a qualitative approach, including in-depth interviews with patients, relatives, nurses, specialists, and general practitioners (GPs). We used the constant comparative method and ATLAS.ti (v. 7.1) software for our analysis.

Saturation occurred after 18 patient cases (76 interviews). Some 5 themes covering 18 categories were identified: (1) priorities in end-of-life care, such as symptom management and maintaining hope; (2) appropriate medication use, with attention to unnecessary medication and deprescription barriers; (3) roles in decision making, including physicians in the lead, relatives' advocacy, and pharmacists as suppliers; (4) organization and communication (e.g., transparency of tasks and end-of-life conversations); and (5) prerequisites about professional competence, accessibility and quality of medical records, and financial awareness. Patients, relatives, nurses, specialists, and GPs varied in their opinions about these themes.

This study adds to our in-depth understanding of the complex practice of end-of-life medication management. It provides knowledge about the diversity of the perspectives of patients, close relatives, nurses, and physicians regarding beliefs, attitudes, knowledge, skills, behavior, work setting, the health system, and cultural factors related to the matter. Our results might help to draw an interdisciplinary end-of-life medication management guide aimed at stimulating a multidisciplinary and patient-centered pharmacotherapeutic care approach.

Advanced care plans (ACPs) are designed to convey the wishes of patients with regards to their care in the event of incapacity. There are a number of prerequisites for creation of an effective ACP. First, the patient must be aware of their condition, their prognosis, the likely trajectory of the illness, and the potential treatment options available to them. Second, patient input into ACP must be free of any coercive factors. Third, the patient must be able to remain involved in adapting their ACP as their condition evolves. Continued use of familial determination and collusion within the local healthcare system, however, has raised concerns that the basic requirements for effective ACP cannot be met.

To assess the credibility of these concerns, we employed a video vignette approach depicting a family of three adult children discussing whether or not to reveal a cancer diagnosis to their mother. Semistructured interviews with 72 oncology patients and 60 of their caregivers were conducted afterwards to explore the views of the participants on the different positions taken by the children.

Collusion, family-centric decision making, adulteration of information provided to patients, and circumnavigation of patient involvement appear to be context-dependent. Patients and families alike believe that patients should be told of their conditions. However, the incidence of collusion and familial determination increases with determinations of a poor prognosis, a poor anticipated response to chemotherapy, and a poor premorbid health status. Financial considerations with respect to care determinations remain secondary considerations.

Our data suggest that ACPs can be effectively constructed in family-centric societies so long as healthcare professionals continue to update and educate families on the patient's situation. Collusion and familial intervention in the decision-making process are part of efforts to protect the patient from distress and are neither solely dependent on cultural nor an “all-or-nothing” phenomenon. The response of families are context-dependent and patient-specific, weighing the patient's right to know and prepare and the potential distress it is likely to cause. In most cases, the news is broken gently over time to allow the patient to digest the information and for the family to assess how well they cope with the news. Furthermore, the actions of families are dependent upon their understanding of the situation, highlighting the need for continued engagement with healthcare professionals.

The aim of this study was to explore the support needs of Dutch informal caregivers of patients with amyotrophic lateral sclerosis (ALS).

Individual semi-structured interviews were conducted with 21 caregivers of ALS patients. Audio-taped interviews were transcribed and data were analyzed thematically.

A total of four global support needs emerged: “more personal time”, “assistance in applying for resources”, “counseling”, and “peer contact”. Despite their needs, caregivers are reluctant to apply for and accept support. They saw their own needs as secondary to the needs of the patients.

ALS seems to lead to an intensive caregiving situation with multiple needs emerging in a short period. This study offers targets for the development of supportive interventions. A proactive approach seems essential, acknowledging the importance of the role of the caregivers in the care process at an early stage, informing them about the risk of burden, monitoring their wellbeing, and repeatedly offering support opportunities. Using e-health may help tailor interventions to the caregivers’ support needs.

This study is part of the overarching PVIS (Palliative Care in Nursing Homes) project aimed at building competence in palliative care for nursing home staff. Our objective was to describe nursing home staff's attitudes to competence-building programs in palliative care.

Three different programs were developed by specialist staff from three local palliative care teams. In all, 852 staff at 37 nursing homes in the greater Stockholm area participated. Staff from 7 nursing homes participated in 11 focus-group discussions. Variation in size between the seven nursing homes initiated purposeful selection of staff to take part in the discussions, and descriptive content analysis was used.

The results suggest that staff reported positive experiences as they gained new knowledge and insight into palliative care. The experiences seemed to be similar independent of the educational program design. Our results also show that staff experienced difficulties in talking about death. Enrolled nurses and care assistants felt that they carried out advanced care without the necessary theoretical and practical knowledge. Further, the results also suggest that lack of support from ward managers and insufficient collaboration and of a common language between different professions caused tension in situations involved in caring for dying people.

Nursing home staff experienced competence-building programs in palliative care as useful. Even so, further competence is needed, as is long-term implementation strategies and development of broader communication skills among all professions working in nursing homes.

The debate regarding euthanasia and physician-assisted suicide (E/PAS) raises key issues about the role of the doctor, and the professional, ethical, and clinical dimensions of the doctor-patient relationship. This review aimed to examine the published evidence regarding the response of doctors who have participated in E/PAS.

Original research papers were identified reporting either qualitative or qualitative data published in peer-reviewed literature between 1980 and March 2018, with a specific focus on the impact on, or response from, physicians to their participation in E/PAS. PRISMA and CASP guidelines were followed.

Nine relevant papers met selection criteria. Given the limited published data, a descriptive synthesis of quantitative and qualitative findings was performed. Quantitative surveys were limited in scope but identified a mixed set of responses. Where studies measured psychological impact, 30–50% of doctors described emotional burden or discomfort about participation, while findings also identified a comfort or satisfaction in believing the request of the patient was met. Significant, ongoing adverse personal impact was reported between 15% to 20%. A minority of doctors sought personal support, generally from family or friends, rather than colleagues. The themes identified from the qualitative studies were summarized as: 1) coping with a request; 2) understanding the patient; 3) the doctor's role and agency in the death of a patient; 4) the personal impact on the doctor; and 5) professional guidance and support.

Participation in E/PAS can have a significant emotional impact on participating clinicians. For some doctors, participation can contrast with perception of professional roles, responsibilities, and personal expectations. Despite the importance of this issue to medical practice, this is a largely neglected area of empirical research. The limited studies to date highlight the need to address the responses and impact on clinicians, and the support for clinicians as they navigate this challenging area.