CONTEXT: In palliative care, caregivers often lack words and competences to discuss patients' needs in the social and spiritual dimensions. The Utrecht Symptom Diary - 4 Dimensional (USD-4D) is an instrument that can be used to monitor symptoms and needs in the physical, psychological, social and spiritual dimensions and to optimize communication between patients and caregivers.
OBJECTIVE: To assess the content validity of the USD-4D items related to the social and spiritual dimensions from a patient's perspective, measured in terms of comprehensibility, relevance and comprehensiveness.
METHODS: An explorative qualitative study was conducted using in-depth semi-structured interviews and thematic analysis. Twelve participants (male N=7, 53-87 years old) with an estimated life expectancy of < 1 year were recruited in two home care services , a general hospital and a hospice.
RESULTS: The instructions, items and response options were comprehensible for almost all participants. The meaning that was provided to the items was expressed in themes: maintaining personal identity and autonomy, resilience, letting go, perceived balance in one's life and death and afterlife. This corresponds with the intended meaning. The items were relevant at some points in time. Not all participants had needs for personal care during the interviews. Participants found the USD-4D comprehensive, no key concepts related to the social or spiritual dimensions appeared to be missing.
CONCLUSIONS: The USD-4D constitutes a content valid PROM from the patient's perspective. The items support patients' in identifying needs in the social and spiritual dimensions and in the conversation to further explore these needs.
BACKGROUND: Although compassionate care is considered a cornerstone of quality palliative care, there is a paucity of valid and reliable measures to study, assess, and evaluate how patients experience compassion/compassionate care in their care.
OBJECTIVE: The aim was to develop a patient-reported compassion measure for use in research and clinical practice with established content-related validity evidence for the items, question stems, and response scale.
METHODS: Content validation for an initial 109 items was conducted through a two-round modified Delphi technique, followed by cognitive interviews with patients. A panel of international Subject Matter Experts (SMEs) and a Patient Advisory Group (PAG) assessed the items for their relevancy to their associated domain of compassion, yielding an Item-level Content Validity Index (I-CVI), which was used to determine content modifications. The SMEs and the PAG also provided narrative feedback on the clarity, flow, and wording of the instructions, questions, and response scale, with items being modified accordingly. Cognitive interviews were conducted with 16 patients to further assess the clarity, comprehensibility, and readability of each item within the revised item pool.
RESULTS: The first round of the Delphi review produced an overall CVI of 72% among SMEs and 80% among the PAG for the 109 items. Delphi panelists then reviewed a revised measure containing 84 items, generating an overall CVI of 84% for SMEs and 86% for the PAG. Sixty-eight items underwent further testing via cognitive interviews with patients, resulting in an additional 14 items being removed.
CONCLUSIONS: Having established this initial validity evidence, further testing to assess internal consistency, test-retest reliability, factor structure, and relationships to other variables is required to produce the first valid, reliable, and clinically informed patient-reported measure of compassion.
All articles in May 2019's special issue of Bioethics offer profound insights into the issue of "being a burden to others" in relation to wishes to die, which are highly relevant for ethical debates about end-of-life care and physician-assisted dying. In this reply, we wish to stress the importance of acknowledging and analyzing the sociopolitical context of the phenomenon "being a burden" in relation to wishes to die and we will show how this analysis could benefit from a care ethical approach. As discussions in care ethics have made clear, caring practices are both social and political practices. An empirical and ethical analysis of "being a burden" therefore needs to take institutional and societal norms and structures into account, in addition to first-person experiences and concepts such as caring needs, relational autonomy, and interdependency. Besides the relevance of the sociopolitical context for the phenomenon "being a burden" as such, the sociopolitical context also seems relevant for the investigation of the phenomenon, which we will illustrate by reflecting on "being a burden" in relation to the practice of physician-assisted dying in the Netherlands.
The aims of this present study were to explore the use and meaning of metaphors and images about aging in older people with a death wish and to elucidate what these metaphors and images tell us about their self-understanding and imagined feared future. Twenty-five in-depth interviews with Dutch older people with a death wish (median 82 years) were analyzed by making use of a phenomenological–hermeneutical metaphor analysis approach. We found 10 central metaphorical concepts: (a) struggle, (b) victimhood, (c) void, (d) stagnation, (e) captivity, (f) breakdown, (g) redundancy, (h) subhumanization, (i) burden, and (j) childhood. It appears that the group under research does have profound negative impressions of old age and about themselves being or becoming old. The discourse used reveals a strong sense of distance, disengagement, and nonbelonging associated with their wish to die. This study empirically supports the theory of stereotype embodiment.
Contrary to common perception, modern palliative care (PC) is applicable to all people with an incurable disease, not only cancer. PC is appropriate at every stage of disease progression, when PC needs emerge. These needs can be of physical, emotional, social or spiritual nature. This document encourages the use of validated assessment tools to recognise such needs and ascertain efficacy of management. PC interventions should be provided alongside cardiologic management. Treating breathlessness is more effective, when cardiologic management is supported by PC interventions. Treating other symptoms like pain or depression requires predominantly PC interventions. Advance Care Planning aims to ensure that the future treatment and care the person receives is concordant with their personal values and goals, even after losing decision-making capacity. It should include also disease specific aspects, such as modification of implantable device activity at the end of life. The Whole Person Care concept describes the inseparability of the physical, emotional and spiritual dimensions of the human being. Addressing psychological and spiritual needs, together with medical treatment, maintains personal integrity and promotes emotional healing. Most PC concerns can be addressed by the usual care team, supported by a PC specialist if needed. During dying, the persons' needs may change dynamically and intensive PC is often required. Following the death of a person, bereavement services benefit loved ones. The authors conclude that the inclusion of PC within the regular clinical framework for people with heart failure results in a substantial improvement in quality of life as well as comfort and dignity whilst dying.
BACKGROUND: Family members do not have an official position in the practice of euthanasia and physician assisted suicide (EAS) in the Netherlands according to statutory regulations and related guidelines. However, recent empirical findings on the influence of family members on EAS decision-making raise practical and ethical questions. Therefore, the aim of this review is to explore how family members are involved in the Dutch practice of EAS according to empirical research, and to map out themes that could serve as a starting point for further empirical and ethical inquiry.
METHODS: A systematic mixed studies review was performed. The databases Pubmed, Embase, PsycInfo, and Emcare were searched to identify empirical studies describing any aspect of the involvement of family members before, during and after EAS in the Netherlands from 1980 till 2018. Thematic analysis was chosen as method to synthesize the quantitative and qualitative studies.
RESULTS: Sixty-six studies were identified. Only 14 studies had family members themselves as study participants. Four themes emerged from the thematic analysis. 1) Family-related reasons (not) to request EAS. 2) Roles and responsibilities of family members during EAS decision-making and performance. 3) Families' experiences and grief after EAS. 4) Family and 'the good euthanasia death' according to Dutch physicians.
CONCLUSION: Family members seem to be active participants in EAS decision-making, which goes hand in hand with ambivalent feelings and experiences. Considerations about family members and the social context appear to be very important for patients and physicians when they request or grant a request for EAS. Although further empirical research is needed to assess the depth and generalizability of the results, this review provides a new perspective on EAS decision-making and challenges the Dutch ethical-legal framework of EAS. Euthanasia decision-making is typically framed in the patient-physician dyad, while a patient-physician-family triad seems more appropriate to describe what happens in clinical practice. This perspective raises questions about the interpretation of autonomy, the origins of suffering underlying requests for EAS, and the responsibilities of physicians during EAS decision-making.
In the Netherlands, physician-assisted dying has been legalized since 2002. Currently, an increasing number of Dutch citizens are in favour of a more relaxed interpretation of the law. Based on an ethos of self-determination and autonomy, there is a strong political lobby for the legal right to assisted dying when life is considered to be completed and no longer worth living. Building on previous empirical research, this article provides a critical ethical reflection upon this social issue. In the first part, we discuss the following question: what is the lived experience of older people who consider their lives to be completed and no longer worth living? We describe the reported loss of a sense of autonomy, dignity and independence in the lives of these older people. In the second part, from an ethics of care stance, we analyse the emerging social and political challenges behind the wish to die. Empirically grounded, the authors argue that the debate on 'completed life in old age' should primarily focus not on the question of whether or not to legitimize a self-directed death but on how to build an inclusive society where people may feel less unneeded, useless and marginalized.
Without an appropriate spiritual care model, it can be difficult to discuss death and dying with people who are confronted with life-threatening or incurable diseases. This book offers a simple framework for interpreting existential questions with patients and helping them to cope in end-of-life situations, with illustrative examples from practice. Building on the medieval Ars moriendi tradition, this model enables open and non-judgemental conversations with both religious and non-religious patients.
Background: Spiritual care is reported to be important to palliative patients. There is an increasing need for education in spiritual care.
Aim: To measure the effects of a specific spiritual care training on patients’ reports of their perceived care and treatment.
Design: A pragmatic controlled trial conducted between February 2014 and March 2015.
Setting/participants: The intervention was a specific spiritual care training implemented by healthcare chaplains to eight multidisciplinary teams in six hospitals on regular wards in which patients resided in both curative and palliative trajectories. In total, 85 patients were included based on the Dutch translation of the Supportive and Palliative Care Indicators Tool. Data were collected in the intervention and control wards pre- and post-training using questionnaires on physical symptoms, spiritual distress, involvement and attitudes (Spiritual Attitude and Involvement List) and on the perceived focus of healthcare professionals on patients’ spiritual needs.
Results: All 85 patients had high scores on spiritual themes and involvement. Patients reported that attention to their spiritual needs was very important. We found a significant (p = 0.008) effect on healthcare professionals’ attention to patients’ spiritual and existential needs and a significant (p = 0.020) effect in favour of patients’ sleep. No effect on the spiritual distress of patients or their proxies was found.
Conclusion: The effects of spiritual care training can be measured using patient-reported outcomes and seemed to indicate a positive effect on the quality of care. Future research should focus on optimizing the spiritual care training to identify the most effective elements and developing strategies to ensure long-term positive effects.
This study was registered at the Dutch Trial Register: NTR4559.
Health care chaplains participated in a multicenter trial to explore an implementation strategy for the Dutch multidisciplinary guideline for spiritual care. The intervention was concise spiritual care training for hospital staff of departments where patients in curative and palliative trajectories are treated. Data were collected in semistructured interviews with chaplains who acted as trainers, before and after the intervention. Results based on nine preintervention and eleven post-intervention interviews are presented. During preintervention interviews, chaplains describe the baseline situation of palliative care in Dutch hospitals, barriers, and opportunities for improving spiritual care. In the postintervention interviews, characteristics of the training, effects, and critical success factors were identified. Positive effects such as lowering barriers, increasing health care professionals' competences, and increasing health care chaplains' profile are possible. Chaplain-led, multidisciplinary spiritual care training is a feasible method to start implementation of spiritual care in hospitals, as described in the multidisciplinary guideline.
In a paper produced by a European Association for Palliative Care taskforce, Manuel Martínez-Sélles and colleagues discuss the needs of patients with end-stage heart failure as they receive palliative care, highlighting the importance of medical teams initiating timely discussions of a range of end-of-life issues at various points in the progression of the disease.
Cette étude montre que l'outil HCT (Hope Communication Tool) est faisable et aide à atteindre une certaine profondeur dans les questions liées à la fin de vie. Les résultats de l'étude pourraient conduire à une révision de l'outil.
Cette étude montre que la dimension spirituelle est seulement intégrée que dans un nombre limité d'équipes de services de consultation palliative aux Pays-Bas. Les freins sont liés à la légitimité et la formation sur cette dimension spirituelle des soins palliatifs.
Les professionnels et les bénévoles engagés dans les soins palliatifs doivent être formés à l'identification des préoccupations spirituelles, et à prendre ces dernières en charge. Le groupe formation de l'EAPC "Soins spirituels et soins palliatifs (European Association for Palliative Care Taskforce on Spiritual Care in Palliative Care) a interrogé les membres de l'EAPC pour recenser les formations en cours ou prévues consacrées à la prise en charge spirituelle. Les données rassemblées concernent 36 formations délivrées dans 14 pays, principalement en Europe.
Le groupe formation émet des recommandations à propos de la formation à la prise en charge des besoins spirituels et encourage les membres de l''EAPC à s'investir dans de telles formations.
[D'après résumé revue]
Le suicide assisté anime la société néerlandaise depuis plus de 40 ans et cela même après le vote de sa dépénalisation en 2001. Cet article revient sur les éléments clés de ce débat, les principaux acteurs concernés, les critiques et défis pour l'avenir.