Après trente ans de pratique et d'évolution des soins palliatifs en France, des changements dans la pratique et dans l'encadrement des patients sont toujours nécessaire.
Le patient, médicalisé pour la pathologie qui l'amène à être pris en charge par la sphère médicale est confronté à une pratique technicisée. Il est régulièrement confronté à un rapport stigmatisant, une honte, qui finit par le caractériser en tant qu'individu.
L'auteur propose ici une reprise en contexte de la réflexion sur les pratiques palliatives et l'accompagnement spirituel du patient ainsi que de son environnment personnel : une réflexion qui nous conduit jusqu'à la terminologie anglo-saxonne de "spiritual care",..
BACKGROUND AND OBJECTIVES: Meaning in life (MIL) represent a key topic in palliative care. The aims of this study were to explore (1) the differences in perceived MIL and in the meaning-relevant life areas between a representative sample of the Swiss population and palliative care patients, and (2) to what extent MIL can be considered as a significant predictor of quality of life (QOL).
METHODS: A cross-sectional study was conducted separately for the patients (face-to-face interviews) and the general population (telephone survey). MIL was measured with the Schedule for Meaning in Life Evaluation (SMILE) and QOL with a single-item visual analogue scale (0-10). Sociodemographic variables were controlled for in the analyses.
RESULTS: 206 patients and 1015 participants from the Swiss population completed the protocol. Results indicated high MIL scores in both populations even if the difference was significant (patients 81.9 vs general population 87, p<0.001). Patients were more likely to cite 'family' (OR=1.78), 'social relations' (OR=1.9), 'spirituality and religion' (OR=3.93), 'social commitment' (OR=1.94) and 'growth' (OR=2.07), and less likely to cite 'finances' (OR=0.15) and 'health' (OR=0.21) as MIL-relevant areas. The SMILE scores and MIL areas explained 21.8% of the QOL variance for the patients and 15.1% for the representative sample.
CONCLUSIONS: Our data emphasise the importance of MIL as a contributor to QOL in both populations. It highlights the importance of the life areas contributing to MIL, especially social interactions for both populations, and spirituality and areas related to growth in palliative care patients.
Background: Chaplain-led communication-board-guided spiritual care may reduce anxiety and stress during an intensive care unit (ICU) admission for nonvocal mechanically ventilated patients, but clinical pastoral education does not teach the assistive communication skills needed to provide communication-board-guided spiritual care.
Objective: To evaluate a four-hour chaplain-led seminar to educate chaplains about ICU patients' psychoemotional distress, and train them in assistive communication skills for providing chaplain-led communication-board-guided spiritual care.
Design: A survey immediately before and after the seminar, and one-year follow-up about use of communication-board-guided spiritual care.
Subjects/Setting: Sixty-two chaplains from four U.S. medical centers.
Measurements: Multiple-choice and 10-point integer scale questions about ICU patients' mental health and communication-board-guided spiritual care best practices.
Results: Chaplain awareness of ICU sedation practices, signs of delirium, and depression, anxiety, and post-traumatic stress disorder in ICU survivors increased significantly (all p < 0.001). Knowledge about using tagged yes/no questions to communicate with nonvocal patients increased from 38% to 87%, p < 0.001. Self-reported skill and comfort in providing communication-board-guided spiritual care increased from a median (interquartile range) score of 4 (2-6) to 7 (5-8) and 6 (4-8) to 8 (6-9), respectively (both p < 0.001). One year later, 31% of chaplains reported providing communication-board-guided spiritual care in the ICU.
Conclusions: A single chaplain-led seminar taught chaplains about ICU patients' psychoemotional distress, trained chaplains in assistive communication skills with nonvocal patients, and led to the use of communication-board-guided spiritual care in the ICU for up to one year later.
The COVID-19 crisis has amplified the importance of palliative care to countless patients suffering with and dying from this disease, as well as to their families, communities, and the worldwide cadre of overburdened healthcare workers. Particularly urgent is the need for spiritual care specialists and generalists to address spiritual suffering given the degree of isolation, loneliness, and vulnerability caused by this pandemic. Although spiritual care has long been recognized as one of the domains of quality palliative care, it is often not fully integrated into practice. All disciplines are ultimately responsible for ensuring spiritual care is prioritized to improve quality of life and the experience of patients and families facing spiritual emergencies amid the complex life-and-death scenarios inherent to COVID-19. Although the pandemic has revealed serious fault lines in many healthcare domains, it has also underscored the need to recommit to spiritual care as an essential component of whole-person palliative care.
BACKGROUND: Palliative care should be holistic, but spiritual issues are often overlooked. General practitioners and nurses working together in PaTz-groups (palliative home care groups) consider spiritual issues in palliative care to be relevant, but experience barriers in addressing spiritual issues and finding spiritual caregivers. This study evaluates the feasibility and perceived added value of a listening consultation service by spiritual caregivers in primary palliative care.
METHODS: From December 2018 until September 2019, we piloted a listening consultation service in which spiritual caregivers joined 3 PaTz-groups whose members referred patients or their relatives with spiritual care needs to them. Evaluation occurred through (i) monitoring of the implementation, (ii) in-depth interviews with patients (n = 5) and involved spiritual caregivers (n = 5), (iii) short group interviews in 3 PaTz-groups (17 GPs, 10 nurses and 3 palliative consultants), and (iv) questionnaires filled out by the GP after each referral, and by the spiritual caregiver after each consultation. Data was analysed thematically and descriptively.
RESULTS: Consultations mostly took place on appointment at the patients home instead of originally intended walk-in consultation hours. Consultations were most often with relatives (72%), followed by patients and relatives together (17%) and patients (11%). Relatives also had more consecutive consultations (mean 4.1 compared to 2.2 for patients). Consultations were on existential and relational issues, loss, grief and identity were main themes. Start-up of the referrals took more time and effort than expected. In time, several GPs of each PaTz-group referred patients to the spiritual caregiver. In general, consultations and joint PaTz-meetings were experienced as of added value. All patients and relatives as well as several GPs and nurses experienced more attention for and awareness of the spiritual domain. Patients and relatives particularly valued professional support of spiritual caregivers, as well as recognition of grief as an normal aspect of life.
CONCLUSIONS: If sufficient effort is given to implementation, listening consultation services can be a good method for PaTz-groups to find and cooperate with spiritual caregivers, as well as for integrating spiritual care in primary palliative care. This may strengthen care in the spiritual domain, especially for relatives who are mourning.
BACKGROUND: Gravely ill patients admitted to the intensive care unit (ICU), and their families experience acute spiritual and existential needs and often require complex decisions about their care. Little is known about what constitutes chaplaincy care for patients or families in ICUs. Chaplains report that participation in medical decision-making is part of their role.
OBJECTIVE: To describe the spiritual care provided to patients and their families in the ICU.
METHODS: This was a retrospective observational study of spiritual care for patients and families in the medical ICUs (MICUs) at 4 medical centers over a 3-month period. Inclusion criteria were death in the MICU or discharge to palliative care or hospice. Measures included medical, treatment, and spiritual care information (number of visits, length of visit, chaplain categories, and type of spiritual care provided).
RESULTS: Of the 254 patients, 197 (78%) received a total of 485 spiritual care visits. Seventy-seven percent of visits included provision of emotional/spiritual support; only 15% included decision-making support such as family meetings or goals-of-care conversations. The proportion receiving spiritual care increased as patients neared death or discharge. Staff chaplains were involved in goals-of-care conversations to a greater extent than student or part-time chaplains (P < .05).
CONCLUSION: Spiritual care was provided to most patients and/or families at the end of life. Low chaplain involvement in decision-making in the MICU suggests opportunities to improve chaplains' contributions to ICU care.
Background: Attending to the religious/spiritual (R/S) concerns of patients is a core component of palliative care. A primary responsibility of the chaplain is to conduct a thorough assessment of palliative care patients' R/S needs and resources. Problems with current approaches to spiritual assessment in all clinical contexts, including palliative care, include limited evidence for their validity, reliability, or clinical usefulness; narrative content; and lack of clinical specificity.
Objectives: The aim of our work was to develop an evidence-based, quantifiable model for the assessment of unmet spiritual concerns of palliative care patients near the end of life.
Design: The PC-7 model was developed by a team of chaplains working in palliative care. Phase 1 used literature in the field and the chaplains' clinical practice to identify key concerns in the spiritual care of palliative care patients. Phase 2 focused on developing indicators of those concerns and reliability in the chaplains' rating of them.
Results: Key concerns in the model include the following. Need for meaning in the face of suffering; need for integrity, a legacy; concerns about relationships; concern or fear about dying or death; issues related to treatment decision making; R/S struggle; and other concerns. An approach to scoring the patients' degree of unmet spiritual concerns was adapted from the literature. Assessing cases from the chaplains' practice led to high levels of agreement (reliability).
Conclusion: Using the PC-7 model, chaplains can describe and quantify the key spiritual concerns of palliative care patients. Further research is needed to test its validity, reliability, and clinical usefulness.
This study aimed to investigate "Faith" and "Meaning/Peace" dimensions of the functional assessment of chronic illness therapy-spiritual well-being scale (FACIT-Sp-12) in relation to coping strategies, anxiety and depression, and to analyze the relationship between FACIT-Sp-12 and the daily spiritual experience scale in end-of-life cancer patients. A sample of 152 participants were involved. The daily spiritual experiences correlated the most with "Faith" subscale. Moreover, religious coping, depression and daily spiritual experiences resulted "Faith" significant predictors, while depression, anxiety, self-distraction, positive reframing and behavioral disengagement were "Meaning/Peace" subscale's significant predictors. These findings highlighted the considerable impact of the daily spiritual experiences on patients' spiritual well-being.
BACKGROUND: Research shows that religion and spirituality are important when persons cope with serious and life-threatening illness. Patients who receive good spiritual care report greater quality of life and better coping, and such support is strongly associated with greater well-being, hope, optimism, and reduction of despair at end of life. Despite these benefits, evidence shows that many patients and caregivers (P/C) refuse spiritual care when a hospice team offers it, possibly resulting in unnecessary suffering.
OBJECTIVE: To better understand what contributes to spiritual support acceptance in hospice care.
DESIGN: Quasi-experimental quantitative study.
SETTING/SUBJECTS: 200 patients admitted to hospice.
MEASUREMENTS: Participants were divided equally into intervention and control arms. Control participants received standard information about the availability of chaplain support and an offer for referral to chaplain services. Intervention participants received educational intervention that explained hospice chaplain services and the evidence-based benefits of spiritual support. The association of chaplain acceptance was measured with treatment group, patient age, disease, church affiliation and support, sex, bereavement risk, and place of residence.
RESULTS: Among intervention participants, 64 (64%) accepted spiritual support versus 52 (52%) of control participants. The intervention arm's acceptance rate was higher than the control arm after adjustment for other variables. The variables associated with acceptance were age, primary diagnosis, and place of residence.
CONCLUSIONS: This research suggests that educational intervention that explains spiritual care in hospice and its benefits contributes importantly to greater acceptance and allows P/C to gain the benefits of spiritual support during end-of-life care.
Palliative care (PC) is an interdisciplinary team approach to address patients’ physical, psychosocial, and spiritual needs to improve quality of life among those who have faced a life-threatening illness. When PC services are provided in an outpatient setting, patients can stay in their homes and have all their physical, psychosocial, and spiritual needs met by a comprehensive health care team to ensure a good quality of life. Because outpatient PC clinics offer a viable option for delivering PC in communities but are not prevalent in the US health care system and were rarely described in the literature, this article has described the development and evaluation of an outpatient PC clinic that was dedicated to integrating spiritual care. Specifically, this article describes (1) the factors prompting development of the clinic and its growth, (2) how a chaplain was integrated into the PC provision process, and (3) the processes and outcomes of evaluation of this clinic.
Quand j'ai accepté le principe de cette intervention, un collègue m'a suggéré de rendre compte de mon expérience comme premier titulaire de la Chaire "Religion santé et spiritualité", à Québec. Qu'est-ce que j'y ai aprris ? Je vais donc tenter de relever ce défi. Quelques énoncés centraux peuvent résumer cette expérience. En voici deux, pour commencer ; un troisième arrivera en conclusion.
Cet ouvrage a été conçu comme un manuel pratique à destination de tous ceux qui veulent se former à l'accompagnement des familles endeuillées, de la préparation à la célébration des funérailles. Il présente des conseils sur les étapes à suivre et les écueils à éviter, ainsi que des pistes pour monter des équipes pastorales de funérailles.
La spiritualité revient dans le monde du soin sous diverses formes. L'auteur s'intéresse à la manière dont est perçu ce développement de la spiritualité dans le monde du soin en s'appuyant sur les travaux de Daniel Sulmasy.
The authors describe the provision of spiritual care at the end of life in Portugal, focusing on the activities of the multidisciplinary Spirituality Group established by the Portuguese Care Association.
De nos jours, les sociétés mandatent fortement la médecine, par des législations variées – sédation, euthanasie, aide médicale à mourir –, pour construire la fin de vie d'autrui à sa demande. L'éthique se trouve de plus en plus sollicitée dans les pratiques soignantes. Mais quelle éthique ? Une accumulation de principes ? Une éthique réduite à la seule normativité juridique, à un protocole ? S'efforçant de réfléchir à quoi se trouvent aujourd'hui confrontés les professionnels s'ils deviennent, dans les faits, les "gardiens" du sens de l'existence de celui, celle qui n'en peut plus, peut-on se contenter de la seule raison pour déployer la signification d'une action ? S'il importe de rendre compte en raison des motifs d'une décision, d'un acte, ces derniers s'inscrivent aussi dans un registre plus large, celui de la spiritualité.
C'est la voie qu'explore cet ouvrage : comment faire habiter ensemble l'éthique et la spiritualité pour penser la demande et les modalités de réponse à la construction contemporaine du mourir ?
L'auteur, octogénaire, théologien catholique, est atteint d'un cancer rare. En douze courts chapitres, il fait une lecture théologique de la fin de vie. Il mène une réflexion sur l'expérience de la maladie et des conditions de son accompagnement médical, psychologique, spirituel et postoral.
[D'après le résumé éditeur]
The delivery of spiritual care in Thailand is hampered by the absence of a model for health care providers that has contextual relevance within the country. Our aim is to develop a Buddhist Spiritual Care Model to guide health care providers in Thailand in the delivery of spiritual care practices for people at the end of life. The new Buddhist Spiritual Care Model builds upon the strength of existing Judeo-Christian theoretical models and extends those to a context where chaplains, for example, play no role in the care of hospital patients. To support Thai nurses in the delivery of Buddhist spiritual care, we have chosen to use 4 familiar steps from the nursing process (needs assessment, planning of actions, activities related to the plan, and effectiveness of activities). This is a thinking structure familiar enough to understand through which health care providers can be encouraged to begin to see themselves delivering spiritual care for people at the end of life and their family members. This theoretical model is conceptualized to allow health care providers to implement spiritual care within the normative environments in Thailand, regardless of their own spiritual affiliations and without relying on a specialist spiritual provider.
The role of the professional chaplain on the palliative care team in the health care setting formalizes the concern for the emotional, spiritual and social well-being of the care recipients and their caregivers. The chaplain also has a peculiar role on the team, in that her most fundamental task is her intentional listening-and-hearing of the other person's story. One palliative chaplain introduces herself as a Story Catcher to care recipients, in an effort both to overcome the resistance some may have to her presence on the team and communicate her essential role and intent in providing spiritual care. This self-appointed sobriquet resonates with the author's embrace of the theory and practice of the late theologian, educator and civil rights activist Nelle Morton, who coined the phrase "hearing into speech" to describe the process by which another person, through being truly heard and entering into a relationship with the hearer, claims her/his own truth, hope and identity in the face of adversity. The chaplain as Story Catcher functions as the agent of healing and hope for those who choose to tell their stories and are heard, as they resist their illness and death rather than submit to its indignity.
L'auteure teste l'hypothèse théorique selon laquelle des similitudes pouvaient exister entre l'expérience d'un mourant qui se défait de ses dernières attaches terrestres et celle d'un accompagnant qui s'efface totalement, dans une attitude proche de la méditation, pour accueillir pleinement celui qui meurt.