Spiritual dimension in palliative medicine: a qualitative study of learning tasks: medical students, teachers, educationalists.

BACKGROUND: Palliative care is gaining importance within the physician's range of duties. In the undergraduate medical curriculum, education on the four dimensions of care is insufficient. The spiritual dimension is hardly addressed. Therefore, we developed a coherent set of learning tasks targeted at learning to communicate about the spiritual dimension. The learning tasks are based on educational principles of authentic learning, reflective learning and longitudinal integration in the curriculum. This article reports on the feasibility of using these learning tasks in the medical curricula. METHODS: Teachers and educational scientists were interviewed and students were asked to evaluate the learning tasks in focus groups. Interview transcripts were analysed by three independent researchers. RESULTS: The learning tasks encourage the students to reflect on the four dimensions of palliative care and their personal values. Learning was clearly organised around authentic learning tasks relevant to the later profession, using paper, video cases, as well as simulations and real patients. Participants suggest giving more attention to cultural diversity. As palliative care is an emotionally charged subject, the safety of both student and patient should be guaranteed. All participants indicated that the program should start in the bachelor phase and most agreed that it should be integrated vertically and horizontally throughout the undergraduate program, although there is some debate about the optimal moment to start. CONCLUSION: The tasks, are authentic, encourage the students to reflect on the spiritual dimension of palliative care and are suitable for integration in the undergraduate medical curriculum.

Twelve tips for patient involvement in health professions education.

Moving towards person-centered care, with equal partnership between healthcare professionals and patients, requires a solid role for the patient in the education of students and professionals. Patients can be involved as teachers, assessors, curriculum developers, and policy-makers. Yet, many of the initiatives with patients are isolated, small events for targeted groups and there is a lack of patient involvement at the institutional level. To support educators in involving patients, both at the institutional level and at single educational encounters, we offer twelve practical tips. This paper came about through an innovative collaboration between healthcare professionals, educators, teachers, and patients. These tips can be used as a tool to start or reinforce patient involvement in health professions education and provide guidance on how to make it a sustainable part of the curriculum. The article involves organizational conditions for success, tips for sustainable partnerships, ideas for curriculum design and proposes concrete teaching strategies. Finally, besides practical tips, we stress that involving patients in education is not business as usual, and paradoxically this needs to be acknowledged before it can become business as usual.

Design and evaluation of a learning assignment in the undergraduate medical curricula on the four dimensions of care: a mixed method study.

BACKGROUND: Chronic and palliative care are rapidly gaining importance within the physician's range of duties. In this context, it is important to address the four dimensions of care: physical, psychological, social, and spiritual. Medical students, however, feel inadequately equipped to discuss these dimensions with the patient. To bridge this gap, a new assignment was developed and implemented, in which students talked to a chronic or palliative patient about the four dimensions of care during an internship. This study, reports the evaluation of this assignment by students and teachers using a design-based approach. METHODS: Mixed methods were used, including a) student questionnaires, b) student focus groups, c) teacher interviews, and d) student's written reflections. Two researchers performed analyses of the qualitative data from the focus groups, interviews, and written reflections using qualitative research software (ALTLAS.TI). Descriptive statistics were computed for the quantitative data using SPSS 21.0. RESULTS: Students and teachers valued talking to an actual patient about the four dimensions of care. Reading and providing peer feedback on each other's reports was considered valuable, especially when it came to the diversity of illnesses, the way that patients cope and communication techniques. The students considered reflection useful, especially in the group and provided it was not too frequent. All the dimensions were addressed in the interviews, however the spiritual dimension was found to be the most difficult to discuss. The analysis of the written reflections revealed an overlap between the social and spiritual dimensions. Students pay a lot of attention to the relationship between the illness and the patient's daily life, but the reflections do often not show insight in the potential relationship between the four dimensions and decisions in patient care. CONCLUSIONS: During internships, medical students can practice talking about four dimensions of care with a chronically ill or palliative patient. Due to the format, it can be implemented across existing internships with relatively little extra time and effort. Reflection, peer feedback, and group discussion under the guidance of a teacher are important additions.

A National, Palliative Care Competency Framework for Undergraduate Medical Curricula.

As nearly all doctors deal with patients requiring palliative care, it is imperative that palliative care education starts early. This study aimed to validate a national, palliative care competency framework for undergraduate medical curricula. We conducted a Delphi study with five groups of stakeholders (palliative care experts, physicians, nurses, curriculum coordinators, and junior doctors), inviting them to rate a competency list. The list was organized around six key competencies. For each competency, participants indicated the level to which students should have mastered the skill at the end of undergraduate training. Stability was reached after two rating rounds (N = 82 round 1, N = 54 round 2). The results showed high levels of agreement within and between stakeholder groups. Participants agreed that theoretical knowledge is not enough: Students must practice palliative care competencies, albeit to varying degrees. Overall, communication and personal development and well-being scored the highest: Junior doctors should be able to perform these in the workplace under close supervision. Advance care planning scored the lowest, indicating performance in a simulated setting. A wide range of stakeholders validated a palliative care competency framework for undergraduate medical curricula. This framework can be used to guide teaching about palliative care.

Palliative care education in the undergraduate medical curricula: students' views on the importance of, their confidence in, and knowledge of palliative care.

BACKGROUND: The need for palliative care is increasing. Since almost every junior doctor will come across palliative care patients, it is important to include palliative care in the undergraduate curriculum. The objective of this research is to gather undergraduate students' views on palliative care in terms of its importance, their confidence in and knowledge of the domain. METHODS: Final-year medical students at four Dutch medical faculties were surveyed. The questionnaire measured their views on the education they had received, their self-reported confidence in dealing with palliative care patients and their knowledge of palliative care. RESULTS: Two hundred twenty-two medical students participated in this study. Students considered palliative care education relevant, especially training in patient-oriented care and communication with the patient. Students felt that several topics were inadequately covered in the curriculum. Overall, the students did not feel confident in providing palliative care (59.6%), especially in dealing with the spiritual aspect of palliative care (77%). The knowledge test shows that only 48% of the students answered more than half of the questions correctly. CONCLUSION: The students in this study are nearly junior doctors who will soon have to care for palliative patients. Although they think that palliative care is important, in their opinion the curriculum did not cover many important aspects, a perception that is also in line with their lack of confidence and knowledge in this domain. Therefore, it is important to improve palliative care education in the medical curriculum.

Mindfulness-Based Intervention for People With Dementia and Their Partners: Results of a Mixed-Methods Study.

OBJECTIVE: Studies have shown preliminary support for mindfulness-based interventions benefitting people with dementia and their caregivers. However, most studies focus on these two groups separately. This study examined whether it would be possible and beneficial for people with dementia and their caregiver to jointly undergo an adjusted Mindfulness-Based Stress Reduction (MBSR) training, named TANDEM. METHODS: The 8-week MBSR training was adjusted based on a literature review and interviews with experts (clinicians and mindfulness trainers). Seven couples (a person with early-stage dementia and their caregiver) participated together in the 8-week TANDEM program. Semi-structured qualitative interviews were conducted after completion. Questionnaires (administered before and after the intervention) assessed the primary outcomes of quality of life and psychological distress (stress, anxiety and depressive symptoms). Secondary outcomes were mindfulness, self-compassion, positive mental health, worrying, and perceived burden (for caregivers). RESULTS: All participants completed the program and reported beneficial effects (relaxation, awareness, acceptance, and resilience). Most managed to integrate exercises into their daily lives and planned to continue their practice. Participating in a group was considered valuable and supportive. Furthermore, it was appreciated that participants could follow the training together (as a couple). The quantitative results showed a small effect on increased quality of life for caregivers. No substantial decrease in psychological distress was apparent. Caregivers displayed a large increase in mindfulness. CONCLUSION: The results of this mixed-methods study suggest that an adjusted mindfulness program is feasible and well-received among couples of persons with early-stage dementia and their caregiver, warranting further research in this area.

Mindfulness Training for People With Dementia and Their Caregivers: Rationale, Current Research, and Future Directions.

The world population is aging and the prevalence of dementia is increasing. By 2050, those aged 60 years and older are expected to make up a quarter of the population. With that, the number of people with dementia is increasing. Unfortunately, there is no cure for dementia. The progression of symptoms with no hope of improvement is difficult to cope with, both for patients and their caregivers. New and evidence-based strategies are needed to support the well-being of both caregiver and patient. Mindfulness training is a body-mind intervention that has shown to improve psychological well-being in a variety of mental health conditions. Mindfulness, a non-judgmental attention to one's experience in the present moment, is a skill that can be developed with a standard 8-week training. Research has shown preliminary but promising results for mindfulness-based interventions to benefit people with dementia and caregivers. The aim of this review is (a) to provide a rationale for the application of mindfulness in the context of dementia care by giving an overview of studies on mindfulness for people with dementia and/or their caregivers and (b) to provide suggestions for future projects on mindfulness in the context of dementia and to give recommendations for future research.

'Life is still worth living': a pilot exploration of self-reported resources of palliative care patients.

BACKGROUND: Facing a terminal illness can be highly stressful and palliative care patients frequently suffer from mood symptoms. The focus of health care is often on treating symptoms whereas health-promoting factors receive less attention. The aim of this study was to explore the views of palliative care patients on resources and ways of coping that help them prevent or manage mood symptoms. METHODS: A pilot qualitative study was performed through face-to-face semi-structured interviews with fifteen ambulant patients with advanced cancer. The interviews were transcribed verbatim and qualitative analysis was performed independently by two researchers, according to the principle of constant comparative analysis. RESULTS: Patients reported on attitudes and specific coping strategies that they found helpful, as well as aspects of their life narrative and spirituality. Resources were found in meaningful contacts with family and friends and in personal attention of professional medical caregivers for their wellbeing. CONCLUSIONS: We conclude that palliative care patients could identify resources to cope with mood symptoms in the context of their unique life. In helping patients to identify the personal resources that are accessible and available in their specific context, patient autonomy in enhancing resilience could be increased.

Spiritual history taking in palliative home care: A cluster randomized controlled trial.

BACKGROUND: Many health-care providers experience barriers to addressing spiritual needs, such as not having the right vocabulary. The ars moriendi model might be a feasible tool for spiritual history taking in palliative care. AIM: To investigate the effect of a structured spiritual history taking on the spiritual well-being of palliative patients in home care. DESIGN: Cluster randomized controlled trial, conducted between February and October 2013. PATIENTS AND METHODS: Registered nurses and general practitioners approached eligible patients with an incurable, life-threatening disease for study participation. Health-care providers allocated to the intervention arm of the study took a spiritual history on the basis of the ars moriendi model. Health-care providers in the control arm provided care as usual. Patient-reported outcomes on spiritual well-being, quality of life, pain, and patient-provider trust were assessed at two points in time. RESULTS: A total of 245 health-care providers participated in the study (204 nurses and 41 physicians). In all, 49 patient-provider dyads completed the entire study protocol. The median age of the patients was 75 years (range: 41-95 years), and 55% of the patients were female. There were no significant differences at any point in time in the scores on spiritual well-being, quality of life, pain, or patient-provider trust between the intervention and the control group. CONCLUSION: This cluster randomized controlled trial showed no demonstrable effect of spiritual history taking on patient scores for spiritual well-being, quality of life, health-care relationship trust, or pain. Further research is needed to develop instruments that accurately assess the effectiveness of spiritual interventions in palliative care populations.

The Ars Moriendi Model for Spiritual Assessment: A Mixed-Methods Evaluation.

PURPOSE/OBJECTIVES: To explore nurses' and physicians' experiences with the ars moriendi model (AMM) for spiritual assessment. DESIGN: Convergent, parallel, mixed-methods. SETTING: Palliative home care in Belgium. SAMPLE: 17 nurses and 4 family physicians (FPs) in the quantitative phase, and 19 nurses and 5 FPs in the later qualitative phase. METHODS: A survey was used to investigate first impressions after a spiritual assessment. Descriptive statistics were applied for the analysis of the survey. In a semistructured interview a few weeks later, nurses and physicians were asked to describe their experiences with using the AMM. Interviews were audio recorded, transcribed, and qualitatively analyzed. Quantitative and qualitative results were compared to see whether the findings were confirmative. MAIN RESEARCH VARIABLES: The survey assessed the feasibility of the AMM for use in palliative home care, whereas the semistructured interviews collected in-depth descriptions of healthcare providers' (HCPs') experiences with the AMM. FINDINGS: The AMM was perceived as valuable. Many patients shared their wishes and expectations about the end of life. Most HCPs said they felt that the patient-provider relationship had been strengthened as a result of the spiritual assessment. Almost all assessments raised new issues; however, many dyads had informally discussed spiritual issues before. CONCLUSIONS: The current study suggests that HCPs believe that the AMM is a useful spiritual assessment tool. Guided by the model, HCPs can gather information about the context, life story, and meaningful connections of patients, which enables them to facilitate person-centered care. IMPLICATIONS FOR NURSING: The AMM appears to be an important tool for spiritual assessment that can offer more insight into patients' spirituality and help nurses to establish person-centered end-of-life care.

Depressive disorder in the last phase of life in patients with cardiovascular disease, cancer, and COPD: data from a 20-year follow-up period in general practice.

BACKGROUND: Depression is assumed to be common in chronically ill patients during their last phase of life and is associated with poorer outcomes. The prevalence of depression is widely varying in previous studies due to the use of different terminology, classification, and assessment methods. AIM: To explore the reported incidence of depressive disorder, as registered in the last phase of life of patients who died from cardiovascular disease, cancer or COPD, in a sample of primary care patients. DESIGN AND SETTING: A historic cohort study, using a 20-year period registration database of medical records in four Dutch general practices (a dynamic population based on the Continuous Morbidity Registration database). METHOD: Medical history of the sample cohort was analysed for the diagnosis of a new episode of depressive disorder and descriptive statistics were used. RESULTS: In total 982 patients were included, and 19 patients (1.9%) were diagnosed with a new depressive disorder in the last year of their life. The lifetime prevalence of depressive disorder in this sample was 8.2%. CONCLUSION: The incidence of depressive disorder in the last phase of life is remarkably low in this study. These data were derived from actual patient care in general practice. Psychiatric diagnoses were made by GPs in the context of both patient needs and delivered care. A broader concept of depression in general practice is recommended to improve the diagnosis and treatment of mood disorders in patients in the last phase of life.

Defining the palliative care patient: a systematic review.

BACKGROUND: The lack of a clear definition of the palliative care patient hampers the comparison of results across different studies and impedes implementation of research findings in everyday practice. AIM: The aim of this article is to propose minimum characteristics that define a palliative care patient. DESIGN: The design involved a systematic review of medical literature searching randomised controlled trials (RCTs) in palliative care for clear descriptions of their palliative care patients. We systematically describe relevant characteristics of the study populations of 60 eligible RCTs. DATA SOURCES: The data sources used were MEDLINE, EMBASE, CINAHL, and PSYCHINFO, including all non-cancer RCTs (1 January 1995-4 March 2010) and an equivalent number of the most recent cancer RCTs (1 January 2003-4 March 2010). RESULTS: Half of the non-cancer studies were excluded because they did not relate to palliative care. We conclude that published RCTs have no clear definitions of their palliative care patients and illustrate the diversity of this patient, the lack of consensus concerning the attributes of illnesses needing palliation and the ambiguous use of the adjective 'palliative'. CONCLUSIONS: We propose elements of the patients' health status (e.g. a progressive, life-threatening disease with no possibility of obtaining remission or stabilisation, or modifying the course of the illness) and the care delivered to them (e.g. a holistic interdisciplinary approach that focuses on supporting the quality of the end of life) to be included in the definition of a palliative care patient. We also suggest considering the patients' readiness to accept palliative care and a vision of palliative care shared by the patient and all caregivers involved as potentially important elements in this definition.

Outcome measures of spiritual care in palliative home care: a qualitative study.

The purpose of this study was to identify key outcome measures of spiritual care in palliative home care. A qualitative study was conducted with experts from 3 stakeholder groups (physicians, professional spiritual caregivers, and researchers) representing 2 countries (Belgium and The Netherlands). Three key outcome measures were identified: the extent to which the patient feels that he or she is being heard and taken seriously, the extent to which the patient experiences that there is a place for that which is insoluble, and the extent to which the patient experiences that there is a place for that which cannot be said. Further research is needed to implement and evaluate these new outcome measures.

Spirituality in palliative home care: a framework for the clinician.

PURPOSE: Spiritual care at the end of life remains poorly understood despite its promotion by the World Health Organisation. The purpose of this paper was to develop a consensus-based framework of the main elements of spiritual care in palliative home care. METHODS: Expert meeting using the nominal group technique, followed by a two-stage web-based Delphi process, was used. Experts from three stakeholder groups (physicians, professional spiritual care givers and researchers) representing two countries (Belgium and the Netherlands) participated in this study. RESULTS: Fourteen elements of spiritual care were retained: (1) being sensitive to patient's fear of the dying process; (2) listening to the patient's expectations and wishes about the end of life; (3) giving attention to patient's wishes about the design of the farewell; (4) offering rituals if the patient experiences them as meaningful; (5) listening to the stories, dreams and passions of the patient; (6) helping the patient find strength in inner resources; (7) connecting with the patient in truth, openness and honesty; (8) supporting communication and quality of relationships; (9) making sure the patient feels comfortable and safe; (10) seeing spirituality as an interwoven, though specific dimension; (11) caring for your own spirituality; (12) knowing and accepting your vulnerability; (13) being able to learn from your patient; and (14) having an interdisciplinary team that is there when needed. CONCLUSIONS: The experts agreed to the 14 main elements of spiritual care in palliative home care. There were no differences in this regard between the stakeholder groups. This study provides a first step towards the development of an interdisciplinary spiritual care model in palliative home care.

Screening instruments for depression in advanced cancer patients: what do we actually measure?

BACKGROUND: Patients in a palliative care trajectory frequently suffer from depression. To distinguish depression from normal sadness, the use of screening instruments could facilitate the diagnostic process. However, in palliative care, screening instruments may not discern physical symptom burden from psychological distress, due to the high number of physical symptoms in palliative patients. OBJECTIVES: The aim of this study was to explore physical symptom burden and psychological distress in patients with advanced cancer in relation to scores on screening instruments for depression. METHODS: Patients with advanced cancer were asked to fill out the Beck Depression Inventory (BDI-II), Beck Depression Inventory Primary Care (BDI-PC), Hospital Anxiety and Depression Scale (HADS), and Memorial Symptom Assessment Scale Short Form (MSAS-SF). The relationship between scores on screening tools for depression and different physical symptom clusters was explored. RESULTS: In the sample of 65 patients, screening instruments for depression correlated highly with different somatic symptom clusters. The BDI-II cognitive subscale was the only scale that was not significantly correlated with any of the somatic symptom clusters. CONCLUSION: Screening tools for the detection of depression in patients with advanced cancer may not provide an accurate evaluation of depression. These tools seem to measure physical symptom burden as well, especially when patients suffer from symptoms of the clusters fatigue/anorexia/cachexia, neuropsychology, debility, or pain. In this study, the BDI-II cognitive subscale seems to differentiate best from somatic symptom burden.

How family physicians address diagnosis and management of depression in palliative care patients.

PURPOSE: Depression is highly prevalent in palliative care patients. In clinical practice, there is concern about both insufficient and excessive diagnosis and treatment of depression. In the Netherlands, family physicians have a central role in delivering palliative care. We explored variation in family physicians' opinions regarding the recognition, diagnosis, and management of depression in palliative care patients. METHODS: We conducted a focus group study in a sample of family physicians with varied practice locations and varying expertise in palliative care. Transcripts were analyzed independently by 2 researchers using constant comparative analysis in ATLAS.ti. RESULTS: In 4 focus group discussions with 22 family physicians, the physicians described the diagnostic and therapeutic process for depression in palliative care patients as a continuous and overlapping process. Differentiating between normal and abnormal sadness was viewed as challenging. The physicians did not strictly apply criteria of depressive disorder but rather relied on their clinical judgment and strongly considered patients' context and background factors. They indicated that managing depression in palliative care patients is mainly supportive and nonspecific. Antidepressant drugs were seldom prescribed. The physicians described difficulties in diagnosing and treating depression in palliative care, and gave suggestions to improve management of depression in palliative care patients in primary care. CONCLUSIONS: Family physicians perceive the diagnosis and management of depression in palliative care patients as challenging. They rely on open communication and a long-standing physician-patient relationship in which the patient's context is of great importance. This approach fits with the patient-centered care that is promoted in primary care.

The Beck Depression Inventory (BDI-II) and a single screening question as screening tools for depressive disorder in Dutch advanced cancer patients.

PURPOSE: Depression is highly prevalent in advanced cancer patients, but the diagnosis of depressive disorder in patients with advanced cancer is difficult. Screening instruments could facilitate diagnosing depressive disorder in patients with advanced cancer. The aim of this study was to determine the validity of the Beck Depression Inventory (BDI-II) and a single screening question as screening tools for depressive disorder in advanced cancer patients. METHODS: Patients with advanced metastatic disease, visiting the outpatient palliative care department, were asked to fill out a self-questionnaire containing the Beck Depression Inventory (BDI-II) and a single screening question "Are you feeling depressed?" The mood section of the PRIME-MD was used as a gold standard. RESULTS: Sixty-one patients with advanced metastatic disease were eligible to be included in the study. Complete data were obtained from 46 patients. The area under the curve of the receiver operating characteristics analysis of the BDI-II was 0.82. The optimal cut-off point of the BDI-II was 16 with a sensitivity of 90% and a specificity of 69%. The single screening question showed a sensitivity of 50% and a specificity of 94%. CONCLUSIONS: The BDI-II seems an adequate screening tool for a depressive disorder in advanced cancer patients. The sensitivity of a single screening question is poor.

Low prevalence of depressive disorder in ambulatory advanced cancer patients using the Schedules for Clinical Assessment in Neuropsychiatry (SCAN 2.1).

Depressive disorder is assumed to be highly prevalent in advanced cancer patients, but the diagnosis of depressive disorder in patients with advanced cancer is difficult. The more robust the assessment instrument to diagnose depressive disorder is, the lower the reported prevalence of depressive disorder in advanced cancer patients. This study confirms a low prevalence of depressive disorder (3%) in 64 advanced cancer outpatients using a robust structured clinical assessment (SCAN 2.1). Furthermore, in this article we discuss possible implications of using predefined psychiatric labeling in the assessment of mood symptoms in advanced cancer patients.