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.
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.
The concept of death anxiety is expected of older persons as they age and are nearing their end-of-life. This study examined the relationship between religiosity, spirituality, and death anxiety among Filipino older adults. A convenience sample of 125 Filipino older adults were recruited in the study. Data were collected using the Spirituality Scale, Revised Death Anxiety Scale, and Dimensions of Religiosity Scale. Results of the study revealed that spirituality (r=-0.168, p = 0.061) and religiosity (r=-0.044, p = 0.623) had an inverse relationship with death anxiety. However, even with the inverse relationship, spirituality and religiosity were not significantly correlated with death anxiety, although participants were well aware of the importance of these concepts on their lives. It is suggested that assessing spirituality and religiosity of this age group can inform nurses to engage in quality nursing practice, by affirming the vulnerability, and preserving the personhood of older persons as they near their end-of-life.
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: Many people are dying from COVID-19, but consensus guidance on palliative care in COVID-19 is lacking. This new life-threatening disease has put healthcare systems under pressure, with increased need of palliative care provided to many patients by clinicians with limited prior experience in this field. Therefore, we aimed to make consensus recommendations for palliative care for patients with COVID-19 using the Convergence of Opinion on Recommendations and Evidence (CORE) process.
METHODS: We invited 90 international experts to complete an online survey including stating their agreement, or not, with 14 potential recommendations. At least 70% agreement on directionality was needed to provide consensus recommendations. If consensus was not achieved on the first round, a second round was conducted.
RESULTS: 68 experts (75.6%) responded in the first round. Most participants were experts in palliative care, respiratory medicine or critical care medicine. In the first round, consensus was achieved on 13 recommendations based upon indirect evidence and clinical experience. In the second round, 58/68 (85.3%) of the first round experts responded, resulting in consensus also for the 14th recommendation.
CONCLUSIONS: This multi-national task force provides consensus recommendations for palliative care for patients with COVID-19 concerning: advance care planning; (pharmacological) palliative treatment of breathlessness; clinician-patient communication; remote clinician-family communication; palliative care involvement in patients with serious COVID-19; spiritual care; psychosocial care; and bereavement care. Future studies are needed to generate empirical evidence for these recommendations.
AIM: To develop an understanding of how nurses provide spiritual care to terminally ill patients in order to develop best practice.
BACKGROUND: Patients approaching the end of life (EoL) can experience suffering physically, emotionally, socially and spiritually. Nurses are responsible for assessing these needs and providing holistic care, yet are given little implementable, evidence-based guidance regarding spiritual care. Nurses internationally continue to express inadequacy in assessing and addressing the spiritual domain, resulting in spiritual care being neglected or relegated to the pastoral team.
DESIGN: Systematic literature review, following PRISMA guidelines.
METHODS: Nineteen electronic databases were systematically searched and papers screened. Quality was appraised using the Critical Appraisal Skills Programme qualitative checklist, and deductive thematic analysis, with a priori themes, was conducted.
RESULTS: Eleven studies provided a tripartite understanding of spiritual caregiving within the a priori themes: Nursing Spirit (a spiritual holistic ethos); the Soul of Care (the nurse-patient relationship) and the Body of Care (nurse care delivery). Ten of the studies involved palliative care nurses.
CONCLUSION: Nurses who provide spiritual care operate from an integrated holistic worldview, which develops from personal spirituality, life experience and professional practice of working with the dying. This worldview, when combined with advanced communication skills, shapes a relational way of spiritual caregiving that extends warmth, love and acceptance, thus enabling a patient's spiritual needs to surface and be resolved.
RELEVANCE TO CLINICAL PRACTICE: Quality spiritual caregiving requires time for nurses to develop: the personal, spiritual and professional skills that enable spiritual needs to be identified and redressed; nurse-patient relationships that allow patients to disclose and co-process these needs. Supportive work environments underpin such care. Further research is required to define spiritual care across all settings, outside of hospice, and to develop guidance for those involved in EoL care delivery.
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.
The purpose of this pilot was to identify the effects of a 4-credit interdisciplinary undergraduate course focused on communication strategies to enhance spiritual care at the end of life. The course provided students with opportunities to enhance their ability to communicate empathically with individuals facing the end of life. Evidence-based content focused on ways to live each day with hope and gratitude, strengthen relationships, create a legacy, and find meaning and purpose in life and death. Narayanasamy's (1999) Actioning Spirituality and Spiritual Care Education and Training in Nursing model guided project development. The study used a prospective, pretest/posttest design. Participants included undergraduate students (n = 34) from nursing, premedicine, athletic training, business, economics, and religious studies at a Midwest liberal arts college. Statistically significant differences were found in students' attitudes toward and knowledge of spirituality/spiritual care (P < .0001, Cohen's d = 0.59), spiritual care competence (P < .0001, Cohen's d = 0.79), and level of response empathy through role play (P < .0001, Cohen's d = 0.92). Many students referred to this course as “life changing” and “healing.” As our students go out into the community, they may intimately touch the lives and hearts of future patients, family, and friends who face the end of life with their compassionate words.
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: Spiritual care is frequently cited as a key component of hospice care in Taiwanese healthcare and beyond. The aim of this research is to gauge physicians and nurses' self-reported perspectives and clinical practices on the roles of their professions in addressing spiritual care in an inpatient palliative care unit in a tertiary hospital with Buddhist origins.
METHODS: We performed semi-structured interviews with physicians and nurses working in hospice care over a year on their self-reported experiences in inpatient spiritual care. We utilized a directed approach to qualitative content analysis to identify themes emerging from interviews.
RESULTS: Most participants identified as neither spiritual nor religious. Themes in defining spiritual care, spiritual distress, and spiritual care challenges included understanding patient values and beliefs, fear of the afterlife and repercussions of poor family relationships, difficulties in communication, the patient's medical state, and a perceived lack of preparedness and time to deliver spiritual care.
CONCLUSIONS: Our study suggests that Taiwanese physicians and nurses overall find spiritual care difficult to define in practice and base perceptions and practices of spiritual care largely on patient's emotional and physical needs. Spiritual care is also burdened logistically by difficulties in navigating family and cultural dynamics, such as speaking openly about death. More research on spiritual care in Taiwan is needed to define the appropriate training, practice, and associated challenges in provision of spiritual care.
Background: Spirituality can give meaning to life, providing support and guidance in complex situations. Despite its importance in palliative care, the role of spirituality for family caregivers of patients under exclusive palliative care has not received enough attention in the literature. We aimed to address the correlation between spirituality and the emotional burden of family members of patients under exclusive palliative care.
Methods: This transversal study was conducted in a tertiary private teaching hospital, in São Paulo, Brazil. The study comprised family members of patients receiving palliative care exclusively. Only one caregiver who cared for the patient for at least 2 months was invited to participate. Family members answered the following questionnaires: WHOQOL spirituality, religiousness and personal beliefs (SRPB), Zarit Burden Interview (ZBI) and Self-Reporting Questionnaire (SRQ-20). They were excluded if patients were residing in a Long Stay Institution. Continuous variables were expressed by median and quartiles and analyzed with the Kruskal-Wallis test with Muller-Dunn post-test adjusted by Bonferroni or with the Mann-Whitney test for two groups. We used multivariable linear regression to identify independent predictors of caregiver burden.
Results: A total of 178 family members were interviewed in a median of 8 [4–13.25] days after patient admission. Almost 40% of families presented high score of burden. Faith and Meaning in Life were the facets that scored the highest, with a median of 4.50 [4.00–5.00] for both facets. There was an inverse correlation between Zarit score and all of the WHOQOL-SRPB facets, indicating that the lower the spirituality, the greater the emotional burden. Inner peace was the strongest protective factor associated with burden.
Conclusions: Psycho-socio-spiritual interaction can improve the coping ability of family caregivers of patients under exclusive palliative care, addressing a critical gap in the provision of holistic palliative care services.
Background: Spiritual care allows palliative care patients to gain a sense of purpose, meaning and connectedness to the sacred or important while experiencing a serious illness. This study examined how Australian patients conceptualise their spirituality/religiosity, the associations between diagnosis and spiritual/religious activities, and views on the amount of spiritual support received.
Methods: This mixed-methods study used anonymous semistructured questionnaires, which included the Functional Assessment of Chronic Illness Therapy-Spiritual Scale-12 (FACIT-SP-12) and adapted and developed questions examining religion/spirituality’s role and support.
Results: Participants numbered 261, with a 50.9% response rate. Sixty-two per cent were affiliated with Christianity and 24.2% with no religion. The mean total FACIT-SP-12 score was 31.9 (SD 8.6). Patients with Christian affiliation reported a higher total FACIT-SP-12 score compared with no religious affiliation (p=0.003). Those with Christian and Buddhist affiliations had higher faith subscale scores compared with those with no religious affiliation (p<0.001). Spirituality was very important to 39.9% and religiosity to 31.7% of patients, and unimportant to 30.6% and 39.5%, respectively. Following diagnosis, patients prayed (p<0.001) and meditated (p<0.001) more, seeking more time, strength and acceptance. Attendance at religious services decreased with frailty (p<0.001), while engagement in other religious activities increased (p=0.017). Patients who received some level of spiritual/religious support from external religious/faith communities and moderate to complete spiritual/religious needs met by the hospitals reported greater total FACIT-SP-12 spirituality scores (p<0.001).
Conclusion: Respectful inquiry into patients spiritual/religious needs in hospitals allows for an attuned approach to addressing such care needs while considerately accommodating those disinterested in such support.
This study aimed to explore spiritual beliefs held by Jordanian patients receiving palliative care. In order to accomplish this aim, three objectives were specified: 1) identify the spiritual beliefs of adult patients receiving palliative care, 2) to develop an Arabic version of the beliefs and values scale, and 3) to identify the perception of spirituality of adult patients receiving palliative care. Cross-sectional descriptive research design was used to describe the spiritual beliefs. The response rate was 70%; non-probability convenience sampling method was used for (N = 119) adult palliative patients who are receiving care at specialized oncology Center in Jordan. The findings revealed that the spirituality religious beliefs aspect total mean score (3.38 ± .33) was higher than the spirituality non-religious beliefs aspect total mean score (2.49 ± .50). There was a significant impact on enhancing spirituality score with patient who had attended a course about spirituality (p = .007) or had been visited by religious adviser (p = .022). Statistically significant differences were found between the religious beliefs score and age (p = .014), educational level (p = .015), and the patient who had attended a course about spirituality (p = .27). The conceptualizations of spirituality highly cultural are marked, and it differs from populations to others; it appears that spirituality among Middle East population is different than Western populations.
Moral agency is a prerequisite for a full autonomous decision, meaning that the agents have the intrinsic capacity to understand their actions and to be accountable for the consequences of these actions. Palliative care patients have the moral right to build their capacity to decide, so that they are truly empowered to make choices. However, moral and spiritual distress are common at the end-of-life, which may rise if there is a threat to the individual’s integrity and disruption of one’s belief system, consequently leading to the deterioration of the patient’s moral agency. The aim of this paper is to determine if spirituality may be an important tool for the empowerment of palliative care patients and if moral agency can be enhanced by a diligent spiritual advocate. Spiritual awareness, self-knowledge, and specific training are key elements for he spiritual advocate to address patients’ spiritual needs and distress in a neutral and non-directive way, to promote autonomy, well-being, and quality of life. Thus, patients’ dignity and right for self-determination are respected, thereby supporting empowerment, reducing suffering, respecting patients’ individuality, and engaging moral agency. Palliative care patients should be able to fully exercise their autonomy. This strategy might be very appealing for adequate advance care planning, whatever the choices of the patient, as well as to prevent distress, hopelessness, and the lack of meaning that many terminal patients experience.
Objectives:To describe the feasibility of a chaplain-led spiritually focused life review interview and the development of a spiritual legacy document (SLD) for patients with advanced diseases and to describe changes in spiritual well-being (SWB), spiritual coping strategies (SC), and quality of life (QOL) after receiving the SLD.
Patients and Methods: In all, 130 patients and support person (SP) pairs were recruited from July 2012 to January 2019. Following enrollment, demographic information was gathered and baseline questionnaires were administered. Functional Assessment of Chronic Illness Therapy'Spiritual Well-Being Scale (FACIT-Sp-12) and a linear analog scale assessment (LASA) measured SWB. LASAs also measured QOL and emotional well-being (EWB). Positive Religious Coping Scale (RCOPE) measured SC. After completion of baseline forms, participants were interviewed (individually) by a chaplain. Interviews were digitally recorded, transcribed, and verified. Transcripts were edited and participants were given the opportunity to make adaptations. The participant-approved draft was then developed into a professionally printed SLD. Follow-up questionnaires were administered to assess change.
Results: Significant improvements from baseline to post-SLD follow-up were found for patients on the LASAs: SWB (average 7.7-8.3, P = .01), QOL (average 6.7-7.3, P = .03), EWB (average 6.9-7.5, P = .01), and on the positive RCOPE (average 1.8-2.0, P = .007). Effect sizes were approximately 0.25. Considering any improvement, 61.0% improved their positive RCOPE score, 46.6% improved EWB, and 39.7% improved SWB. No significant changes were found on the FACIT-Sp-12. No significant changes were found for SPs.
Conclusion: The results suggest that the primary participants who completed the study benefited by significantly increasing their QOL, SWB, EWB, and SC.
Older people living alone has been reported to be socially isolated and suffering from loneliness. Although spiritual care is a core element of end-of-life care for older people, a clear-cut definition of spirituality has not been established yet. It remains unclear how spirituality is perceived by heath care professionals and how spiritual care is delivered in the end of life. Also, most of the previous studies on perspective of older people living alone targeted women, while very few researches shed light on the experience of older men. The aim of the present study was to investigate the spirituality of older men living alone near the end-of-life. We conducted group interviews targeting 30 care managers and individual in-depth interviews to 15 older men living alone. Qualitative content analysis was used. Five main themes emerged: worthlessness and hopelessness, autonomy and independence, comfort and gratitude, past experiences, and well-being indicator. Our findings provide important additional information that can help clinicians, nurses and care managers achieve better patient-centered care for older men living alone and enhance their dignity. Our investigation found that Japanese older men living alone were enjoying their autonomous status and freedom, despite wide spread negative views of them. Their spiritual health was found to be enhanced through gratitude to everyone with whom they had crossed paths in their life, yearning for the presence of a female companion, and confirming their health measurements were comparative or better than those of others in the same age group.