The aim of this cross-sectional study was to investigate attitudes of New Zealanders toward death and dying. We administered an online version of Collett–Lester Fear of Death Scale and Concerns about Dying Instrument subscales to a representative sample of the New Zealand population. One thousand one people responded to the survey, where the largest age-group lay between 30 and 39 years. Respondents with strong religious beliefs showed strongest agreement to being anxious about their own death compared to those who have no religious beliefs (p = .0005). Conversely, participants with strong spiritual beliefs did not feel anxious about dying (=.0005). Participants with strong family connections believed their religion/spirituality helped them think about death compared to those with weak family connections (p > .0001). Our findings show that strong religious beliefs significantly predict higher levels of death anxiety compared to participants with strong spiritual beliefs. This is probably due to the cultural identity of those sampled.
Family caregivers experience multiple transitions, resolutions, loss, and grief where their search for meaning becomes evident. Spirituality is an important dimension of palliative care, yet little attention has been given to this important aspect of spirituality especially among the family caregivers in a hospice setting. The study aimed to bring the hidden voices of family caregivers, their own spiritual experiences caring for their dying patients in a hospice setting, to guide and direct the care practices of health care professionals. An interpretive descriptive approach guided the study using a purposive sample of 18 family caregivers from a hospice in Karachi, Pakistan. Major themes were family love, attachment, and belongingness; honoring family values and dignity; acts of compassion and selfless service; and seeking God’s kindness and grace. Spirituality enabled family caregivers to uncover meaningful engagement and provided strength and peace while serving a dying family member in challenging caregiving situations such as adversity and limited resources. They highly valued the love, respect, and honor of the family; showed compassion; believed in God’s blessings; and experienced spiritual growth and self-transcendence. Spirituality was found to be a major resource of coping among family caregivers. Health care professionals need to integrate spirituality while developing family-centered interventions in hospice care.
BACKGROUND: Diagnosis and treatment of incurable cancer as a life-changing experience evokes difficult existential questions.
AIM: A structured reflection could improve patients' quality of life and spiritual well-being. We developed an interview model on life events and ultimate life goals and performed a randomized controlled trial to evaluate the effect thereof on quality of life and spiritual well-being.
DESIGN: The intervention group had two consultations with a spiritual counselor. The control group received care as usual. EORTC QLQ-C15-PAL and the FACIT-sp were administered at baseline and 2 and 4 months after baseline. Linear mixed model analysis was performed to test between-group differences over time.
PARTICIPANTS: Adult patients with incurable cancer and a life expectancy >=6 months were randomized in a 1:1 ratio to the intervention or control group.
RESULTS: A total of 153 patients from six different hospitals were included: 77 in the intervention group and 76 in the control group. Quality of life and spiritual well-being did not significantly change over time between groups. The experience of Meaning/Peace was found to significantly influence quality of life (beta = 0.52, adj. R(exp2) = 0.26) and satisfaction with life (beta = 0.61, adj. R(exp2) = 0.37).
CONCLUSION: Although our newly developed interview model was well perceived by patients, we were not able to demonstrate a significant difference in quality of life and spiritual well-being between groups. Future interventions by spiritual counselors aimed at improving quality of life, and spiritual well-being should focus on the provision of sources of meaning and peace.
Grief and loss are universal experiences for all individuals and communities. The experience of a loss due to death and the bereavement process to follow are influenced by an individual's religious values and beliefs. In this article, we discuss the Sikh bereavement process in the United States. We provide brief personal narratives as exemplar case studies, highlight religious and cultural factors, and explain potential challenges of bereavement. Finally, we discuss implications for mental health clinicians and other providers of services that surround death and dying.
PURPOSE: Approaching death seems to be associated with physiological/spiritual changes. Trajectories including the physical-psychological-social-spiritual dimension have indicated a terminal drop. Existential suffering or deathbed visions describe complex phenomena. However, interrelationships between different constituent factors (e.g., fear and pain, spiritual experiences and altered consciousness) are largely unknown. We lack deeper understanding of patients' inner processes to which care should respond. In this study, we hypothesized that fear/pain/denial would happen simultaneously and be associated with a transformation of perception from ego-based (pre-transition) to ego-distant perception/consciousness (post-transition) and that spiritual (transcendental) experiences would primarily occur in periods of calmness and post-transition. Parameters for observing transformation of perception (pre-transition, transition itself, and post-transition) were patients' altered awareness of time/space/body and patients' altered social connectedness.
METHOD: Two interdisciplinary teams observed 80 dying patients with cancer in palliative units at 2 Swiss cantonal hospitals. We applied participant observation based on semistructured observation protocols, supplemented by the list of analgesic and psychotropic medication. Descriptive statistical analysis and Interpretative Phenomenological Analysis (IPA) were combined. International interdisciplinary experts supported the analysis.
RESULTS: Most patients showed at least fear and pain once. Many seemed to have spiritual experiences and to undergo a transformation of perception only partly depending on medication. Line graphs representatively illustrate associations between fear/pain/denial/spiritual experiences and a transformation of perception. No trajectory displayed uninterrupted distress. Many patients seemed to die in peace. Previous near-death or spiritual/mystical experiences may facilitate the dying process.
CONCLUSION: Approaching death seems not only characterized by periods of distress but even more by states beyond fear/pain/denial.
Healthcare services are often out of sync with cultural, spiritual and religious perspectives on health, death, and grieving. This dissonance affects attitudes and behaviours in seeking and utilizing end-of-life health services and can lead to poor clinical communication, misunderstanding, and anxiety as patients, families and health providers interact during a serious illness. To address a gap in cultural-specific information Canadian Virtual Hospice launched LivingMyCulture.ca-an evidence-informed collection of videos of immigrants, refugees, and Indigenous people sharing their stories about the intersection of culture, spirituality, and religion with their experiences of advanced illness, palliative care, and grief. The video repository includes over 650 video clips, available in 11 different languages. These narratives empower and educate patients and their families by raising their awareness about accessing, advocating, and receiving culturally safe and inclusive care as they navigate the Canadian healthcare system. LivingMyCulture.ca also promotes culturally sensitive care among health providers to enhance their knowledge and skills in providing culturally safe and inclusive care in order to improve care outcomes. This presentation will introduce LivingMyCulture.ca, provide strategies for incorporating the tool into practice to support patient and family care and share summative evaluation results. A Somali-Canadian journalist and community leader will share her unique Muslim and Somali perspective about the way illness, dying and grief is approached and the impact of LivingMyCulture.ca in the community. Overviews of other culture groups' video resources will also be shared, reflecting Canada's rich cultural tapestry. This workshop will provide an overview of LivingMyCulture.ca, share video clips from the 11 cultures in the series and include a discussion with a Somali-Canadian journalist and community leader about the way people in her culture approach illness, dying and grief and the overall impact of LivingMyCulture.ca.
There is a distinct lack of literature related to the spiritual care of parents whose children with cancer are at the end of life. This has led to a dearth in evidence about how nurses may intervene with spiritual care interventions to best support these vulnerable parents. The purpose of this scoping review was to examine the evidence regarding the value of spirituality/spiritual care in minimizing the vulnerability of parents whose children were diagnosed with cancer and who faced the end of life. The Arksey and O'Malley methodological framework guided the analysis of the reviewed quantitative and qualitative literature. Spirituality and spiritual care provided bereaved parents and parents of children with cancer with necessary support and enhanced coping to allow them to better deal with this devastating experience. Spirituality and spiritual care instilled hope, assisted in the search for meaning and purpose, and guided parents to develop continuing bonds with their child. Through skillful communication, pediatric oncology nurses may guide parents of children who face the end of life to strengthen relationships that offer support, plan activities that provide opportunities for hope and connection, and identify sources of meaning in their experiences.
BACKGROUND: Spiritual care is an important aspect of palliative care. In the Netherlands, general practitioners and district nurses play a leading role in palliative care in the primary care setting. When they are unable to provide adequate spiritual care to their patient, they can refer to spiritual caregivers. This study aimed to provide an overview of the practice of spiritual caregivers in the primary care setting, and to investigate, from their own perspective, the reasons why spiritual caregivers are infrequently involved in palliative care and what is needed to improve this.
METHOD: Sequential mixed methods consisting of an online questionnaire with structured and open questions completed by 31 spiritual caregivers, followed by an online focus group with 9 spiritual caregivers, analysed through open coding.
RESULTS: Spiritual caregivers provide care for existential, relational and religious issues, and the emotions related to these issues. Aspects of spiritual care in practice include helping patients find meaning, acceptance or reconciliation, paying attention to the spiritual issues of relatives of the patient, and helping them all to say farewell. Besides spiritual issues, spiritual caregivers also discuss topics related to medical care with patients and relatives, such as treatment wishes and options. Spiritual caregivers also mentioned barriers and facilitators for the provision of spiritual care, such as communication with other healthcare providers, having a relationship of trust and structural funding. In the online focus group, local multidisciplinary meetings were suggested as ideal opportunities to familiarize other healthcare providers with spirituality and promote spiritual caregivers' services. Also, structural funding for spiritual caregivers in the primary care setting should be organized.
CONCLUSION: Spiritual caregivers provide broad spiritual care at the end of life, and discuss many different topics beside spiritual issues with patients in the palliative phase, supporting them when making medical end-of-life decisions. Spiritual care in the primary care setting may be improved by better cooperation between spiritual caregiver and other healthcare providers, through improved education in spiritual care and better promotion of spiritual caregivers' services.
With a growing population of transgender-identified elders in the United States, their unique spiritual end-of-life needs are coming to light. This article presents a case study of a hospice volunteer who used skillful means as an artist to help a transgender-identified woman express her spirituality in the last 6 months of her life. After data analysis, 4 themes emerged related to the expression of spirituality by lesbian, gay, bisexual, transgender, and queer (LGBTQ) elders at end of life. The themes that emerged included (1) the human element in advocacy for spiritual care, (2) the importance of safe spaces for reflection and meditation, (3) the importance of skillful means to work with LGBTQ people, and (4) acknowledgement of gender identity as a spiritual need. This case study serves as a springboard to advance research into the end-of-life needs of LGBTQ elders and the ways in which members of the hospice team can support spiritual care and alleviate suffering for this population.
Context: The psychosocial and spiritual needs of individuals with life-limiting conditions in low- or middle-income countries have not been well described. Understanding these needs is important to providing holistic palliative care.
Aim: This study aims to better understand the psychosocial and spiritual needs and supports of patients with advanced, incurable illness in Bangladesh.
Subjects and Methods: Individuals with advanced incurable illnesses (advanced cancer and HIV/AIDS) from a wide geographical distribution across Bangladesh were interviewed about their health status, emotional and spiritual experiences with their illness, coping and support systems, and greatest needs and fears.
Results: We interviewed 221 individuals with incurable cancer (82%) or HIV/AIDS (18%). Self-reported health status was poor or very poor for 48%, and 44% reported feeling unhappy all of the time. The majority (61%) rated their current level of unhappiness as 10/10. Spouses (50%), children (15%), and parents (13%) were the most common caregivers. Money and medical care were equally the most common needs (46%). Participants' greatest fears were for the future of their children (38%), being in pain (29%), and dying (28%).
Conclusions: There is a significant burden of psychosocial and spiritual concerns among patients with advanced incurable illness in Bangladesh, with sadness being very frequent and of high intensity. Family and friends provide significant emotional and practical support to patients who are seriously ill, but very few patients access any professional support for these concerns.
Spiritual care is recognized as a relevant dimension of health care. In the context of pediatric palliative end-of-life care, spirituality entails more than adhering to a spiritual worldview or religion. Interviews with parents whose critically ill child died in the pediatric intensive care unit revealed features of a spirituality that is fragmentary and full of contradictions. This type of spirituality, which we refer to as fragile, speaks of parents' connectedness with the deceased child and the hope of some kind of reuniting after one's own death. Acknowledging that fragments of spirituality can be part of parents' experiences in their child's end-of-life stage can be a meaningful contribution to compassionate care.
L’objectif de ce texte est d’exposer la vision d’un théologien catholique, et professeur émérite en communication et journalisme sur la question de l’accompagnement spirituel des personnes qui demandent une euthanasie.
This study investigated the importance of religious and spiritual beliefs in daily life in explaining prolonged grief disorder (PGD) symptomatology. Participants were 588 bereaved adults who completed a questionnaire. The importance of spiritual beliefs in daily life explained a small to medium, significant 3% of variance in PGD symptoms, but religious beliefs in daily life did not. Individuals who placed moderate importance on spiritual beliefs in their daily life may experience more intense grief.
Cette étude qualitative s’est attachée à décrire les représentations des professionnels vis-à-vis du concept de spiritualité afin de mieux cerner son intégration dans l’accompagnement. La méthodologie retenue repose sur l’organisation de deux focus groups pluriprofessionnels (en institution et au domicile), adjoignant chacun 6 professionnels impliqués dans l’accompagnement en soins palliatifs (2 médecins, 5 infirmiers, 3 aides-soignants, 1 psychologue et 1 interne). Une analyse de contenu a permis de mettre en évidence trois thèmes pivots émanant des focus groups : les représentations de la spiritualité des professionnels ; la place qu’elle occupe dans leur pratique et leurs attentes en matière d’accompagnement spirituel. De par le caractère polysémique qu’elle revêt, la spiritualité est un concept difficile à aborder lors de la rencontre avec le patient pour les professionnels. Cependant, tous soulignent l’importance d’assurer un accompagnement global de la personne en tenant compte de l’ensemble des dimensions de la personne, y compris spirituelle et ce, qu’elle soit religieuse ou non. Proposer à l’autre un espace, une présence, une écoute à cette dimension, si la demande s’en fait sentir, ce sont des attitudes que tendent à suivre les professionnels pour éclairer le cheminement personnel des patients et la mise en sens de ce qu’ils traversent.
BACKGROUND: Spiritual care is integral to palliative care. It engenders a sense of purpose, meaning, and connectedness to the sacred or important and may support caregiver well-being.
AIM: To examine caregivers' spirituality, religiosity, spiritual well-being, and views on spiritual/religious support.
DESIGN: A mixed-methods study across 4 Australian sites, recruiting caregivers of patients with a life expectancy of under 12 months. The anonymous semistructured questionnaire used included research team developed and adapted questions examining religion/spirituality's role and support and views on hospitals supporting spiritual/religious requirements. It additionally included the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp-12).
RESULTS: One hundred nine caregivers participated (47.4% responded). Median spiritual well-being was 30.5 on FACIT-Sp-12. Religious affiliation was associated with higher Faith subscores (P < .001). Spirituality was very important to 24.5%, religiosity to 28.2%, and unimportant to 31.4% and 35.9%, respectively. Caregivers prayed (P = .005) and meditated (P = .006) more following patients' diagnoses, gaining comfort, guidance, and strength. Caregivers whose spiritual/religious needs were met to moderate/full extent by external religious/faith communities (23.8%) reported greater spiritual well-being (P < .001). Hospitals supported moderate/full caregiver spiritual needs in 19.3%. Pastoral care visits comforted 84.4% of those who received them (n = 32) but elicited discomfort in 15.6%. Caregivers also emphasized the importance of humane staff and organizational tone in supporting spiritual care.
CONCLUSIONS: Hospital-based spiritual care providers should seek to identify those who seek pastoral or religiously orientated care. Genuine hospitality of showing concern for the other ensures the varied yet inevitably humanist requirements of the caregiver community are met.
CONTEXT: Although religion and spirituality are important to surrogate decision makers, little is known about the role of religion in decision making regarding life sustaining treatments.
OBJECTIVES: To determine the relationships between dimensions of religion and spirituality and medical treatment decisions made by surrogates.
METHODS: This prospective, observational study enrolled patient/surrogate dyads from three hospitals in one metropolitan area. Eligible patients were 65 years or older and admitted to the medicine or medical intensive care services. Baseline surveys between hospital days 2-10 assessed seven dimensions of religion and spirituality. Chart reviews of the electronic medical record and regional health information exchange 6 months after enrollment identified the use of life sustaining treatments and hospice for patients who died.
RESULTS: There were 291 patient/surrogate dyads. When adjusting for other religious dimensions, demographic, and illness factors, only surrogates' belief in miracles was significantly associated with a lower surrogate preference for DNR status (Adjusted odds Ratio (aOR) 0.39, 95% confidence interval (CI) 0.19, 0.78). Among patients who died, higher surrogate intrinsic religiosity was associated with lower patient receipt of life-sustaining treatments within the last 30 days (aOR 0.66, CI 0.45, 0.97). Belief in miracles (aOR 0.30, CI 0.10, 0.96) and higher intrinsic religiosity (aOR 0.70, CI 0.53, 0.93) were associated with lower hospice utilization.
CONCLUSIONS: Few religious variables are associated with end of life preferences or treatment. Belief in miracles and intrinsic religiosity may affect treatment and should be identified and explored with surrogates by trained chaplains or other clinicians with appropriate training.
This study aimed to examine the reliability and validity of a scale to assess the competence of Korean nurses who provide spiritual care for patients with terminal illnesses. The reliability and validity were examined using Cronbach a, item analysis, and exploratory factor analysis. The participants were 248 hospice nurses working at 40 hospices and palliative hospitals in South Korea. The results showed that the reliability was high, as indicated by a Cronbach a of .942. The exploratory factor analysis revealed 6 dimensions (assessment and implementation of spiritual care, professionalization and improvement of the quality of spiritual care, personal support and patient counseling, referral to professionals, attitude toward the patient’s spirituality, and communication) with 27 items. The 6 factors explained 68.20% of the variance in the Korean version of the Spiritual Care Competence Scale. From the results, the Korean version of the Spiritual Care Competence Scale may serve as an appropriate measure for provision of spiritual care for patients with terminal illness. In addition, it may be useful in assessing hospice and palliative nurses’ ability for spiritual 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.
The lives of healthy and sick people are structured according to a variety of conceptual matrices. One of these matrixes consists of philosophical, spiritual, and religious convictions, being this especially relevant in the process of the end of life. The objective of the study is to understand the meaning that individuals at the end of life and the relatives of such individuals award spiritual and/or religious beliefs through an examination of caregiver narratives. Multicentric study was developed that used a qualitative design and a phenomenological approach. The study was conducted in the autonomous community of Andalusia, specifically in the provinces of Almeria, Malaga, Seville, Granada, and Huelva. The selection method was purposive sampling. Caregivers who had lost a relative in a period between 2 months and 2 years previously and who were not in a process of pathological grieving were selected for inclusion in the study. The method involved five discussion groups and 41 in-depth interviews, with a total of 87 participants. A change of paradigms is necessary in which, among other elements, the focus of palliative care is centered on the ability to address these spiritual needs, and healthcare professionals are trained to assist in the provision of such care. Another important consideration is the inequality of spiritual supported provided by clergy from various religions. At least in the cultural context of the research, Catholic chaplains were the only institutional figures whose presence was assumed necessary by health organizations. However, the cultural and/or religious diversity in the autonomous community in which the study was conducted is increasingly broad and complex. It appears necessary to incorporate a variety of clergies in health units so that all patients may find support, whether in terms of companionship or celebration.
PURPOSE: Spirituality and religion affect patient health. This topic is often not included in medical resident education. We aimed to evaluate resident knowledge, attitudes, and skill regarding spirituality, religion, and medicine and to develop, implement, and evaluate a curriculum to improve these measures.
METHODS: Internal medicine residents at a large, urban academic center were surveyed to determine their baseline knowledge, attitudes, and skill regarding spirituality and religion (37.4% response rate, n = 46/123). A lecture and discussion-based curriculum was implemented over 1 year, followed by another survey (41.4% response rate, n = 51/123); 2 statistic was used to compare pre- and postsurveys to evaluate the curriculum.
RESULTS: Baseline resident attitudes toward spirituality, religion, and medicine were high with most agreeing chaplains are valuable in patient care (93.5%) and that patient spiritual and religious beliefs can affect health (93.5%). Resident self-reported knowledge and skill were low with few knowing the training chaplains receive (4.3%) or reporting competence taking a spiritual history (15.2%). After the curriculum, resident self-reported knowledge increased regarding the role of chaplains (56.5%-80.4%, P = .011) and the training chaplains receive (4.3%-27.5%, P = .002). No significant postcurriculum change was seen in attitudes or skill.
CONCLUSIONS: Most internal medicine residents have positive attitudes toward spirituality, religion, and medicine. They do not have adequate knowledge or skill to care for patients in this area, however. Implementation of a curriculum in spirituality, religion, and medicine improved resident self-reported knowledge. Future work should focus on revising the curriculum to better improve resident knowledge and skill.