New public health approaches to palliative care highlight the role of communities in care, yet there is little evidence of studies on community-led initiatives in the palliative care context. Therefore, the aim of this study, which took place in Auckland, New Zealand, was to (1) explore Pacific family carers’ views on what they need to feel supported as they care for older family members at the end of life and (2) to devise a resource that reflects their views that may be used to raise community awareness about these needs. This was achieved using a Participatory Action Research (PAR) framework in which a focus group was carried out and a work group formed to implement the focus group’s recommendations that were informed by a thematic analysis of the focus group data. The analysis resulted in the foregrounding of four themes, with the focus of this paper being on the 4th theme, the centrality of spirituality for a group of Pacific caregivers. This emphasis was chosen due to it being an underexplored topic in the palliative care literature. Co-creating resources based on research with community members allows for the development of tailored approaches of significance to that community, in this instance, a music video.
OBJECTIVES: Though critical care physicians feel responsible to address spiritual and religious needs with patients and families, and feel comfortable in doing so, they rarely address these needs in practice. We seek to explore this discrepancy through a qualitative interview process among physicians in the intensive care unit (ICU).
METHODS: A qualitative research design was constructed using semi-structured interviews among 11 volunteer critical care physicians at a single institution in the Midwest. The physicians discussed barriers to addressing spiritual and religious needs in the ICU. A code book of themes was created and developed through a regular and iterative process involving 4 investigators. Data saturation was reached as no new themes emerged.
RESULTS: Physicians reported feeling uncomfortable in addressing the spiritual needs of patients with different religious views. Physicians reported time limitations, and prioritized biomedical needs over spiritual needs. Many physicians delegate these conversations to more experienced spiritual care providers. Physicians cited uncertainty into how to access spiritual care services when they were desired. Additionally, physicians reported a lack of reminders to meet these needs, mentioning frequently the ICU bundle as one example.
CONCLUSIONS: Barriers were identified among critical care physicians as to why spiritual and religious needs are rarely addressed. This may help inform institutions on how to better meet these needs in practice.
Nurses conduct physical and psychosocial assessments during admissions to healthcare facilities. Patients rely upon nurses to provide support and education during their journey, from periods of health decline to states of optimal wellness. Therefore, nurses are an ideal population to assess spiritual health. The value and necessity of spiritual assessment were explored on an inpatient unit providing medical and palliative care to patients. Two spiritual assessment tools, comprised each of five items, were evaluated by nursing staff and patients. Spiritual Assessment Tool 1 used language that was unaffiliated with religion, nor a belief in God, and Spiritual Assessment Tool 2 used language affiliated with faith and belief in God.
Over time, end of life care has been heavily influenced by the systems of religion, ethics and spirituality. The Sikh religion was started by Guru Nanak Dev Ji in 1469. It has a unique philosophical understanding of life, death and God which can be relevant to commonly encountered clinical scenarios. Concepts such as ‘Ik-Oankar’, Hukam (God’s will), ego and karma all influence how practising Sikhs respond to situations in everyday life. Understanding the spiritual underpinnings of the Sikh religion is therefore important for clinicians caring for this group of patients. This article will explore the fundamental concepts of the Sikh religion and how these apply to common scenarios encountered within palliative care.
BACKGROUND: Recognizing and managing existential suffering remains challenging. We present two cases demonstrating how existential suffering manifests in patients and how to manage it to alleviate suffering.
CASE DESCRIPTION: Case 1: A 69-year-old man with renal cell carcinoma receiving end-of-life care expressed fear of lying down "as he may not wake up." He also expressed concerns of not being a good Christian. Supportive psychotherapy and chaplain support were provided, with anxiolytic medications as needed. He was able to express his fear of dying and concern about his family, and Edmonton Symptom Assessment System scores improved. He died peacefully with family at bedside. Case 2: A 71-year-old woman presented with follicular lymphoma and colonic obstruction requiring nasogastric drain of fecaloid matter. Initially, she felt that focusing on comfort rather than cure symbolized giving up but eventually felt at peace. Physical symptoms were well-controlled but emotionally she became more distressed, repeatedly asking angrily, "Why is it taking so long to die?." She was supported by her family through Bible readings and prayers, but she was distressed about being a burden to them. An interdisciplinary approach involving expressive supportive counseling, spiritual care, and integrative medicine resulted in limited distress relief. Owing to increasing agitation, the patient and family agreed to titrate chlorpromazine to sedation. Her family was appreciative that she was restful until her death.
CONCLUSION: Existential suffering manifests through multiple domains in each patient. A combination of pharmacologic and non-pharmacologic techniques may be needed to relieve end-of-life suffering.
Background: Mindfulness practices may have a role in reducing suffering and improving spiritual well-being among patients with serious illness. The efficacy, feasibility and acceptability of such interventions warrant further exploration in the palliative care population.
Objective: To investigate the effect of a brief mindfulness practice, the 5-minute mindfulness of peace intervention, on suffering and spiritual well-being among palliative care patients.
Methods: A randomized controlled study was conducted on adult palliative care patients with moderate to severe levels of suffering. Participants in the intervention arm were guided through a 5-minute mindfulness of peace exercise while participants in the control arm received 5 minutes of active listening. Pre- and post-intervention suffering and spiritual well-being were measured using the Suffering Pictogram and the FACIT-Sp-12 questionnaire, respectively.
Results: 40 participants completed the study. 5-minute mindfulness of peace significantly reduced suffering (median = -3.00, IQR = 2.00) more than 5 minutes of active listening (median = -1.00, IQR = 1.75), U = 73.50, z = -3.48, p = 0.001, 2 = 0.31. FACIT-Sp-12 score also significantly improved in the intervention arm (median = +5.00, IQR = 2.75) compared with the control arm after 5 minutes (median = +1.00, IQR = 3.00), U = 95.50, z = -2.85, p = 0.004, 2 = 0.21.
Conclusions: A brief 5-minute mindfulness of peace exercise is effective in providing immediate relief of suffering and improving spiritual well-being. It is a useful and feasible intervention among patients receiving palliative care for rapidly and momentarily reducing spiritual suffering.
Spirituality could be understood as a personal belief, a relation with sacred, divine experience, a sense of purpose and meaning towards life, authenticity and connectedness. It is a continually evolving, highly complex, contextual, subjective, and sensitive construct. A continuous development is seen around understanding about spirituality and spiritual concepts, such as spiritual experiences, spiritual pain and spiritual distress, especially among patients and families at the end of life. The concepts, values, attitudes, and beliefs around spirituality, spiritual needs and expressions vary among different individuals, cultures, and religions. There is a dearth of literature around spirituality, especially among Muslim patients and families at the end of life. The complexities around the concept of spirituality in the literature raise several ethical and methodological concerns for a novice researcher while planning and conducting a study on spirituality during end-of-life care in a hospice setting, especially among a Muslim population. This paper aims to share some of the methodological and ethical challenges that can be faced by qualitative researchers while conducting research around spirituality and end-of-life care in an Islamic/Muslim context. Major challenges include defining the term spirituality, spirituality and culture, communication, power relations, language and translation, recruitment and selection of the participants, emotional distress, and reflexivity and reciprocity. Having an in-depth understanding of these challenges can guide researchers to address these issues adequately in their spirituality research in a Muslim context.
INTRODUCTION: Patients with life-threatening diseases have reportedly end-of-life experiences that are perceived positively. Loved ones and healthcare personnel may mistakenly interpret the phenomena as confusion and patients can be reluctant to talk about it due to fear of ridicule. Studies addressing patients directly are scarce and there is a lack of studies from highly secular countries. The aim was to establish whether end-of-life experiences are present among patients, oriented in time, place and person and receiving palliative end-of-life care in one of the world's most secular countries. If present, examine the content and patients' subjective experiences.
DESIGN: Qualitative design with semi-structured, in-depth interviews. 25 participants, receiving end-of-life palliative care at home or in a hospice inpatient unit.
RESULTS: Patients were interviewed on 1-3 consecutive occasions. 16/25 patients reported end-of-life experiences of which the majority were perceived to be positive. Four themes were identified: vivid dreams while asleep, experiences while awake, references to medical circumstances and communication about end-of-life experiences. Prevalent content was deceased and living loved ones and journeys. Some patients distinguished between hallucinations/nightmares and end-of-life experiences.
CONCLUSIONS: End-of-life experiences are present among oriented patients in a highly secular country and can have a profound positive impact, which warrants clinical attention. Education for healthcare personnel about end-of-life experiences is needed in order to support patients and loved ones and not mistakenly medicalize. Further directions for research could be to study the experiences of the phenomenon among health care personnel in the same context, which could strengthen the present findings.
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",..
Hinduism is one of the five major world religions with >1 billion followers worldwide and encompasses a diversity of belief systems. As of 2010, an estimated 1.8 million Hindus lived in the United States, and this number is expected to increase to 4.8 million by 2050, making the United States home to the largest Hindu population outside of South Asia. As this population continues to grow, it will become increasingly important that clinicians of all disciplines develop a basic understanding of their beliefs and practices to address their palliative care needs. This article highlights 10 considerations for Hindu patients and their families relevant to inpatient care, symptom management, and advance care planning.
Context: The WHO recognizes the need to attend to patients' spiritual needs as being fundamental to comprehensive and high-quality end-of-life care. Spiritual needs must be attended to since the resolution of biological and psychosocial issues is insufficient to reduce patients' suffering. Associations have been found between spiritual needs and other variables of importance for patients in palliative care. Despite the consensus that exists regarding the importance of assessing and attending to spiritual needs, professionals encounter many difficulties in attempting to do so.
Objectives: Our study aims to demonstrate the benefits that the Kibo therapeutic interview in palliative care patients can have for spirituality, demoralization, and resilience.
Methods: A parallel randomized controlled trial of two groups was undertaken. Information on 60 palliative care patients during pre- and post-intervention time points was gathered.
Results: ANOVAs showed a statistically significant effect of the intervention on the dimension of transpersonal spirituality. The ANCOVA for the effect of the intervention on resilience also pointed to its effectiveness. When the means of demoralization were examined, a higher decrease in the levels of demoralization for patients in the intervention group was observed, when compared to patients in the control group.
Conclusion: Our findings point to this interview as an effective means to attend to the spiritual needs of palliative patients, reducing demoralization and increasing resilience. Future research could focus on a broader sample and on the effects of this interview on family caregivers, mourners, and health care professionals.
The WHO has included the spiritual dimension in its definition of palliative care since 1990, but this dimension is frequently confused with notions of religion. Yet, the spiritual suffering experienced by palliative care patients is primarily a matter of existential suffering. The objective of this study was to examine the ways in which the existential dimension was manifested in the experiences of those present in a palliative care unit. This anthropological monograph was conducted in a palliative care unit in a French University Hospital. The existential dimension appears to reside in the connections between individuals and the proximity of death appears to shed new light on the meaning of life. The mirror effect of death on life, could serve to encourage greater appreciation of the value of our connections with others, and the desire to take care of others, which offers new insight into forms of solidarity and social organisation.
BACKGROUND: Patients receiving palliative care may benefit greatly when their existential or spiritual strengths are fostered. To date however, there has not been a comprehensive literature review of patient and care professional approaches that are available.
AIMS: To describe and synthesise existential or spiritual strength-based approaches within the context of palliative care.
METHODS: Literature search of 2436 articles between January 1999 and March 2019 in Scopus, Web of Science, CINAHL and PsycINFO. Articles were included if they deal with a palliative care situation, focus on the patient, specific existential/spiritual strength, discernible strength approach and an analysis of the workings of that approach. The interpretative synthesis consisted of a thematic analysis of the included articles and an integration of themes.
RESULTS: In the 14 included articles, 5 different strengths were found to be fostered by 16 approaches: (1) Meaning was fostered by: maintaining normalcy, experiencing sanctuaries, reassessing importance and reconstructing positive self; (2) Connection by: opening up, giving/receiving care and envisioning continuation; (3) Agency by: maintaining control, refocusing goals and continuous adaptation; (4) Hope through: setting special targets, imagining alternate outcomes, building a collection and extending wishes; (5) Faith through: living the tradition and relating to a benevolent force. Strengths and approaches are visualised in an overarching analytical framework: 'the Propeller'.
CONCLUSIONS: The constructed Propeller framework can be used to become aware of, apply and further develop approaches to foster existential or spiritual strengths among patients receiving palliative care.
INTRODUCTION: While spirituality and quality of life (QOL) are essential components of end-of-life (EOL) care, limited studies have examined these constructs for indigenous peoples. Therefore, the purpose of this article was to examine the state of the science regarding spirituality and QOL at EOL for indigenous people, particularly Native Americans.
METHOD: The Arksey and O'Malley (2005) framework guided this scoping review, which examined 30 articles that included qualitative and quantitative studies, commentary papers, and reviews.
RESULTS: The findings identified five spiritual dimensions: the life and death journey, a belief in spirits, tribally grounded traditions, dominant cultural religion influences, and a family focus. QOL indicators included survivorship, optimization of holistic health, communication, and access to appropriate resources. Death rituals were important EOL elements.
DISCUSSION: Given the importance of spirituality to QOL for indigenous people, clinicians must be knowledgeable and responsive to indigenous spiritual needs to promote QOL at EOL.
L’objectif de ce travail de réflexion est de mieux appréhender ce que vivent ces personnes qui ont foi en cette continuité de la vie dans leur deuil, et de porter un regard ouvert sur les expériences autour de la mort qui sont parfois difficiles à livrer. Le but étant d’appréhender au mieux la problématique que génère la croyance en l’au-delà sur le processus et le travail de deuil :
N’est-il pas contraire à l’objectif d’acceptation de la séparation avec l’être cher, que de croire qu’il persiste ailleurs dans l’au-delà ?
[Extrait de l'introduction]
This study focuses on the impact of common spiritual beliefs regarding metaphysical questions in agreeability with the practice of hastened death. A sample of 497 Portuguese medical students was collected. Differences between genders and religions, predictors for agreeability with hastened death and the association between spiritual beliefs and opinion towards hastened death cases were assessed. Respondents were mostly favourable to the practice of hastened death. Formal religious affiliation and higher levels of religiosity significantly associated with lesser agreeability with hastened death. Statistically significant association was found between every hastened death scenario and multiple of the spiritual beliefs used. A number of spiritual beliefs were predictors of agreeability. We discuss the implications of religion and spirituality in agreeability with hastened death. Further research is required to better understand the true weight of spirituality in one's opinion towards this ethical dilemma.
OBJECTIVE: In 2015, a Chaplaincy Research Consortium generated a model of human spirituality in the palliative care context to further chaplaincy research. This article investigates the clinical fit of (a) the model's fundamental premise of universal human spirituality and (b) its 4 proposed stage descriptors (Discovery, Dialogue, Struggle, and Arrival).
METHOD: First, we collected qualitative data from an interdisciplinary palliative care focus group. Participants (n = 5) shared responses to the statement "the human spirit has essential commonalities across [ … ] groups and [ … ] attributes." Participants also shared vignettes of spiritual care, and 48 vignettes illustrating patients' spiritual journeys were subsequently taken from the transcript of that group. Second, we invited different mixed discipline palliative care professionals (n = 9) to individually card sort these vignettes to the model's 4 stage descriptors; we conducted pattern analysis on the results. We then administered a third step, convening six physicians to complete the card sort again, this time allowing designation of cards to one or two of the 4 stage descriptors.
RESULTS: Focus group participants were supportive of the model's all-encompassing definition of spirituality. The concept of "connectedness" was a shared focus for all participants, connectedness and spirituality appearing almost synonymous. Pattern analysis of assigned 48 vignettes to the 4 stages showed stronger consensus around Discovery and Arrival than Struggle and Dialogue. Results of the additional card sort suggested Struggle and Dialogue involve oscillation and are harder to think of as a steady state as distinct from processes associated with Discovery or Arrival.
SIGNIFICANCE OF RESULTS: "Connectedness" is a productive concept for modeling human spiritual experience near the end of life. As one healthcare professional said: "this connectedness piece is [ … ] what I always look for … " Although further work is needed to understand struggle and dialogue elements in peoples' spiritual journeys, discovery and arrival shared consensus among participants.